6/9/08
6/6/08
It has been nearly a month. I continue to play out Samuel's last days each week. Especially yesterday. A month before yesterday was Samuel's 24 hour period of giving us all the love he could muster. That was the day he was supposed to go to sleep and not wake up, except he didn't. The pictures from above were mainly taken a month ago when he was loving us for the very last time on earth. These still hurt to look at and I really want to archive this page but I know that when I turn this page, there will be no more "new" Samuel memories and times to share with you. That reality hurts so much still. A month ago today, we took Samuel in for his last platelets. I had to work to wake him up that morning after he colored his last picture for me in the 5/6 pic above. He took a four hour nap and I could hardly rouse him. I asked him if he wanted to go in or just sleep fearing that he was just going to sleep. I asked him how I was going to take him in there and he shot up out of sleep to say, "In my stroller." Then back to bed he went. He wanted to go. I rode with him right next to his seat in the van holding his head and body upright in his chair as he slept the entire way. I cried tears for how horrible it all was and knowing that it was his last trip in the van. He slept most of the transfusion away and hardly even noticed RN's Susan and Chris coming to see him for what they knew was the last time. We all prayed over him and cried as we left. The trip home was equally as awful. Samuel never woke up when I dressed him to leave or carried him to the van. I had to support his whole body on the way home as well. He never noticed us get home or the fact that we ordered pizza for dinner. We hadn't had pizza in months because it was something he could not eat. He would have loved it, but he did not even notice. I sat in the rocking chair and held him like he was a little baby and at one point, in his sleep, he reached up and hugged me. He was there, and he was gone. I carried him to bed, changed diapers for half the night, and he never woke. It wasn't until midnight that he sat up and said he wanted to go downstairs. I got Mark up so that we could spend every last second with him. And we stayed up for several hours watching TV until suddenly his pain caught up and then we played catch up again. We wanted Samuel to be free from that torment and yet wanted to freeze the small amount of time where he was coloring and content. The remaining day was tormented and while there were some good parts, it is a day that has faded from my memory mainly because I was so sleep deprived. And of course, the morning he woke up and went to Heaven, then there is that. I am reminding myself when I wake up at 6am that Samuel got up and went to Jesus. And for him, it is happily ever after. Don't get me wrong, I am thrilled for him. I look back at his life and I cannot think of a kid who deserves Heaven more. God has been dealing with my emotions and perspective this week and I know that in the end, Samuel won.
Samuel won the hearts of tens of thousands. Over ten thousand people visited this site in just one day during the week Samuel ran to Jesus. Over 50k in a weeks time visited the site. I know based on the many letters I have received that hearts came back to Jesus. Faith was restored. Many who never have prayed for anyone prayed for the first time because of Samuel. I believe that God planted a seed in them that day and that He will become a reality in their lives through Samuel. People with no faith in LOVE learned what true love was through Samuel. People who did not even know it wrote down words from God and mailed them to me because of Samuel. People who feared they did not know what to say helped heal parts of my heart. Samuel won. He won people for Jesus.
People who I thought would have walked away after Samuel left us are still drawn to our family. I got a phone call this week from the Cesium support person, Larry. I saw the number come up on caller ID and thought he probably wanted me to talk to someone about the protocol. I certainly did not tell him about Samuel, remember, I haven't told anyone. I answered the phone and heard, "Jen, it's Larry. I am so sorry." I was shocked to tears. I could not even speak. He said, "Jen, are you there?" "Yes, I am here," I say as best I can choking back tears. I asked how he found out. Apparently his daughter found our site, most likely through their own site tracking since I have him linked. Now, he did not have to call but I have worked with him for ten months and he obviously cared about us enough to do so. It really touched my heart. They had read enough of the site to know that in the end Samuel's gut failed him and his cancer got the upper hand. He ended the call saying that if I even just needed to talk, I could call anytime. Then, toward the end of this week, we received a card from Samuel's GI. Almost a month later, she is thinking about Samuel and us. Want to know what I got from the Onc or the Onc Clinic? Nada. Perhaps my GI is not as used to her kids dying so she actually still has empathy. The card from the GI was more an admiration card to Mark and I than a sorrow filled card. She also mentioned that she wants to do something incredible for our kids, 'because she knows Samuel's medical care was expensive." And I mean INCREDIBLE. Her card brought back a flood of emotions on it's own but truly, I thought that the e-mails we exchanged just about a month ago would have been the end of things. Samuel won. He affected people. I know my GI will not forget what we were able to accomplish in the last year and while my Onc would probably argue cancer vs. gut until he died, I know my GI learned something and wouldn't She wrote that "We taught her to think outside the box." WE taught HER! Samuel won. He got one MD, and a good one at that, to realize that as she put it, "Other things work." She said she will never forget him or us. I believe that.
We went to Costco today and as we checked out, I looked over and saw the Huggies on the end cap and it was a dagger to my heart. I remembered having Mark buy those over the nice 7th Generations diapers we were using since Samuel was just going through 15 a night in the end. I don't know if I felt sick because I missed him, or because when Mark bought them, it was just an awful time or what. But I stopped myself and thought that I should not be feeling sorry but I need to be rejoicing because we don't have to live like that and more importantly, Samuel doesn't have to live like that.. On May 8th, Samuel got up and rather than hang around here another day and suffer it out, he went to Heaven. He probably feels sorry for us stuck here. Can you imagine all the cool things he can do now and I just know he would want us to see. Can you imagine all the cool places he can go, animals he has, people he has met and he has done it all without us? It must seem strange to him that we are not right there in paradise too. When I think of all he suffered here and especially the torment in the end, I can feel nothing less than joy in that he got up that day and left. Samuel won. He got the ultimate prize in life. He did his job on earth and was rewarded with Heaven. He is not lost, he is not dead, he is just relocated. Many people have written me saying that I must be so proud. I am. I believe he changed many lives and brought people to God, possibly more in his exit from earth than in his lifetime.
What is the ultimate way to hurt the devil for what he has done to our family? Turn people to Jesus. Samuel did that. I remember taking him to the ER last summer and he told the RN, "I am going to heaven." I said, "Well, not today." Boy does that sound familiar, only in reverse. Let me tell you that that statement made an impression on that RN that she did not forget. Someone else asked him if he knew Jesus and he said, "Well, duh!" Someone asked him if Jesus was in his heart and he said, "Of course, Jesus is cool." My most precious gift from Samuel was his drawing of the "Three Horn Dinosaur with Jesus in it's heart." Even Samuel's animals have Jesus in their hearts. He wasn't afraid to tell people about Jesus. I am amazed at the people we run into IRL who hint around about God but don't come right out and ask. They ask if Samuel "said anything" as he left us. Well unfortunately, he was too busy having a seizure to speak. So I tell them he was well prepared for eternity. He knew where he was going, where we would be and who was waiting for him. People seem relieved once we say that, as if it gives permission to talk about God. These are sad and serious times we are living in. Samuel had the joy of the Lord if I ever saw it.
In Samuel's last weeks I spent quite a bit of time crying and grieving right next to him. Do you know that he never cried or partook of any of the sadness? We told him where he was going, what he was going to do there, who he would see there, and that he would always know where we were and he accepted that and was fine. On one of the last days here, he told me it wasn't fair and started to cry about leaving and I reminded him how much better off he was going to be and he was then fine. I imagine, "You will NEVER hurt again and you can eat ANYTHING you want, " sounded great on those last days of misery. I do believe that his spirit "knew" his earthly time was short based on the things he said and did in the final weeks. I wonder if he wasn't dreaming of heaven or even being shown things especially the day he tried to rip his port out and said, "No more port medicine." He did that right out of a dream. There were also many times where he woke up and sat up quickly like he was trying to "leave" his body only to realize he was stuck in it still. He would seem off balance and say, "Whoa......" when he sat up like that. Even that last night, he would just sit straight up right after waking and seem confused as to what he was doing, or perhaps had been doing. I think there were a lot of things going on that we won't know for sure until we are reunited. I just know that somewhere inside, Samuel knew. He knew that May 5th was to be his last "good" day and he gave us everything he had smiling through death. That was the Joy of the Lord. It certainly wasn't the joy of life. It was definitely love of God because anyone else would have been mad over those circumstances. His spirit was strong and true and I said it on that day and will say it again. Samuel IS divine love. He tried to make US feel better as he prepared for eternity. He understood his life was going to improve the minute he shed his sick body.
I got 900 pictures into photo albums this week. I made a pile of pictures to put away, maybe burn at a later date. The giant album on the table in my living room has all happy pictures. There are a LOT of happy pictures. Again, Joy of the Lord. You can look at them and never know the pain he endured. It makes you happy to see all the smiles, all the places we went, things we did, even though so many things were horrible. One person wrote that Samuel was NOT cancer. We did not live cancer. Cancer was a mountain that we went around as much as we could. They are right in the analogy. We did so many things, made so many memories and never let that stupid cancer stand in the way as long as Samuel was good to go. When things were glorious and Samuel was doing well, we just pretended cancer did not exist as best we could. I don't believe we wasted a day. Samuel did not even know the word cancer until last year and then cancer became synonymous with "demons" and it was just demons after that. He wasn't afraid to tell people he was fighting demons either. Boy, did that bring about many strange looks! Cancer is demonic. My Mom actually wondered if Samuel whispering, "Help me" at the very end wasn't demons knowing their time was near. Well, the demons died with the cancer and Samuel's spirit was free, and he received a new heavenly body the instant he left us. Samuel won. He lived as much as he could in his time here. If I could relive one day, it would be that snow day earlier this year. That was a day I truly wish we had in a bottle. Precious. And many many times, I have spent time with him thinking that it might have to sustain me. Now it does. As I went through the pictures, I reminded Daniel of how many times I told him to get in the picture with Samuel because it might be all he had someday. He told me, "Well, I never believed he would pass." Life's lessons. I still have another 1000 pictures to put away into books. I think I have five pictures of Samuel to every two of the rest of the family. It is funny how I just "knew." I have tons of Samuel baby pictures that were never posted here because he was little and NOT sick. Just being a sweet baby. Oh, he was so cute!
Time keeps ticking away and when I feel sad, I remember Samuel is NOT sad, he is happy. He is waiting for us and he is healed. Do you know that he has lived a month without transfusions, narcotics, nose tubes, ports, shunts, surgeries, anal issues, poop problems, skin breakdown, starving, gut dysfunction, pain, suffering, screaming, crying, or misery of any kind. He has lived a month with nothing but love, happiness, freedom to eat, freedom to play, learn and he has MET Jesus. He is with Delma, my brother, Mac who is Delma's husband, other kids, animals and so many new things to do that he probably doesn't know where to start. Can you wrap your mind around that? I don't think I have ever missed someone so much yet been so happy they were gone. I am glad he got out of his life on earth. It feels strange and sad here without him and we are definitely still not used to it but we are adapting. I have been saturating my mind with the things of God and reining my children in a little as I do it. My other kids have had a free rein especially in the last months and I see many behaviors that I don't like. God showed me this week that Samuel was my best friend because I spent so much time with him. When you sit in a 15x15 room for days on end alone with someone, you really learn everything about each other and how to get along. A child learns how to act really quickly when Mom never leaves the room. Samuel reminds me of Mark and I because we were his only role models. I realized I need to put tons of quality time into the other kids because I want them all to be exceptional and have an impact on the world. They don't need to be sick to do it either. Samuel was exceptional in all that he did and all that he was. There is no reason my other kids cannot follow in his footsteps. I spent a lot of time being Samuel's Mom and a lot less time being Mom to the other kids, that is for certain. So we are definitely working on changing some things here and continuing to unite our family in the love that got us this far in the first place. I have most appreciated the notes from people who could "feel" the love of our family through the updates and pictures. Our family was so perfect when Samuel was in it, and I believe that we can adjust to life as it is now knowing that our family IS still perfect, just different. Samuel IS perfect. But then, his spirit always was. I am tired of grieving. I haven't "lost" Samuel. He is not lost. He is alive and kicking living God's plan for his life in Heaven. Samuel continues to send me signs that he is "checking in on us every day." I cannot feel much grief when I think of him being free of everything he endured here. I miss him, but I am glad he was spared even one more day of agony. I also notice that it is much easier for me to hear from God when I am not wrapped up in sorrow but rather yearning for His voice. Signs from Samuel come when you least expect them but there is usually something daily. When I think I have not "heard" from him and night is falling, something will come forth. And again, I say, Samuel won. He teaches us even from Heaven. I have kids who need a mom and a husband who needs a wife and yes, there will be sadness, but I refuse to drown in it. God has provided us a means to move on and fill the huge void left behind with something old and comforting, and yet still new. And it will provide the opportunity for some great family time. God knows what we need.
This week our family went to the place we are moving Bud tomorrow to walk the fence line and survey for a shelter spot. It did not occur to me until we got there and the kids got out and started running all over the place that this was going to be a little spot of heaven on earth for us all. The land has a year round creek, blackberries galore and is probably just shy of two fenced acres for everyone to play. Since it is "ours" they are free to roam while we do horse stuff. It felt great! I talked to the owners who asked about the Craig List ad. I told them just how much God was a part of us finding them and they were full of goose bumps too. The lady said, "Well, let's give the Lord praise." These are my kind of people! We plan to go get Bud tomorrow even though the weather does not look like it wants to co-operate. Please pray that we get a nice day for the journey and that we are all safe as we travel. The kids are going to Mark's parents but are VERY excited for Bud to get here. I guess I will be buying bulk carrots again, only they will be for Bud. He likes apples too as well as all the grains I used to feed Samuel. I wonder how he feels about garlic????????? Anyway, I know it will be a fun and surreal day for us knowing that God planned it all out. I imagine Samuel in Heaven playing with my first horse, "The Piglet" and thinking I should have Bud to play with now because horses are very fun. The Piglet was another one of those "once in a lifetime horses." Interestingly enough, her life was also cut short and she died from colic, a gut dysfunction. I think she and Samuel have something in common. We are excited to spend some quality time with our horse and our family at this new place. I know it will definitely have healing potential for us all.
I want to continue to thank those who check in, pray, and for your continued generosity. I realized that in the last month, of al the things we have had on our minds, paying the bills or me working hard wasn't among them. Thank you all so much. We are humbled and overwhelmed with your support and sacrifice. We pray that God continue to bless you all and I am certain that Samuel knows you all by name. He is the kind of kid who would want to know who helped him. Much love.
6/1/08
It is June now? Time just keeps ticking away without my little Pooper. Anna has been dreaming about playing with him every night. I am glad he comes to play with her in her dreams. Perhaps that is why he is not in my dreams. Each day she will get up and tell me what they did. I wish it was real for us all.
After three days of droning in a dark sorrow, God reached down into the black water and drew me out. I was able to breathe again. Not only that, yesterday I was smiling and laughing. I can tell you that only God could have accomplished that feat given the pit of despair I was falling into.
I have received so many notes saying the same thing. Everyone believed that Samuel would get his miracle. Many were shocked when he did not. Shocked and angry. The day I signed the DNR form was that horrible day you hope never comes. The day you realized that maybe you are NOT going to get your miracle. Perhaps God took the last couple months off. Samuel did not receive his miracle on earth for lack of us believing or people praying. I know that in that final few weeks, we held onto hope even though we were planning for the worst. We fully believed that God could change it all any instant even though we were preparing ALL our children including Samuel for the event where He chose not to heal Samuel. I fully believe today that if God wanted to restore Samuel's ashes in my room back into the Samuel we miss, He could. Anytime. I sat here the past week reliving all those last weeks trying to sort out exactly what happened and when. You know the hindsight thing? Where did it go wrong? What was the final straw? Why did he have to suffer so much? Why is it all we seem to remember? Why was it all so awful? What was the point of it all anyway? Where was God when our faith in Him never wavered? I believed in healing. Divine health. God's promise of Restoration to our family. What the heck happened?
As I sat and asked God for the answers, I got none. Nothing. How many times have I sat and asked God questions and actually received the answers? Many. Well, I got nothing. And I told God then through so many tears that I have NOTHING for Him. Is He there for me? Does He hear me? I couldn't tell. Fundamentally, my overall faith has not changed and I would never turn from God EVER. For as horrible as this is, I would rather go through it WITH God than without Him. I still believe the same things about God as I did last month, last year, etc. But in so many of the tortured moments I have had to endure, all I can offer God is my sadness. Really. There is nothing else. I told Him that. I have nothing. I didn't even know how to love God at that moment. Or trust Him. I know I should be happy Samuel is free and happy, and while my head is, my heart cannot get past the loneliness. I tried praising Him for making a place for Samuel to escape but that quickly melted back to sadness and tears. Sadness in that I KNOW that He could have stepped in and healed Samuel. Sadness in that I feel my faith was not honored. The faith and prayers of so many were not honored. Honored by God who is supposed to be bound to His Word. I spoke the Word over Samuel so many times. "By His stripes, you are healed." Countless times I spoke that over Samuel. Samuel would stop me after the prayer was done to say, "by the way, I don't have any stripes." For as many miracles as Samuel received, I had no problem reaching out and expecting another. It is hard to know what to do in the moment when you realize it is all over. It is not going to happen. Nothing can change the past. Nothing can erase it, fix it or make it better. As I cried out to God for relief from this grief prison, I felt more isolated and alone than ever. I did not hear God, feel God, nothing. I wondered if God even bothered to listen at that point. Is He even up there at all paying attention to us? Is He on vacation today? What? I know I just need to trust that God knows the "bigger picture" and somehow His decision is best. That is a really hard thing to do with your heart. In my head, I can justify so many reasons why this had to end this way. But in my heart which believes God can do ANYTHING, I cannot connect point A to point B. I just don't get it. Obviously the answers to all my questions are for a different time.
I got up yesterday morning glad that Mark was home for the weekend. The walls start closing in during the week. The new reality which is now mine is setting in and NOT sitting well. Once again, we are stranded here day in day out. The kids play with the neighbors most of the day and I am to go on and do my normal thing. I guess now that is cooking, cleaning, working and schooling. None of which sound very appealing. I just want to get out of here. I hate this house and being stuck in it. And it is not like I can just drive a car away. Oh, no. I am stuck. We could go for a walk, but there is nowhere to really go that memories of Samuel don't shatter over my head. I feel imprisoned in this house, this life and this grief. I don't want to be stranded in any of it. Things have literally felt hopeless. I hate hopeless. Hospitals are hopeless. Grief feels hopeless. Well, yesterday, God showed me that He is still here, He still hears us and he KNOWS our heart's desires. He still wishes to bless us and He brings comfort to the weak and weary. He brings hope to the hopeless. He turns tears into laughter.
Since Samuel's rebirth in the Kingdom, I have been trying to find a place for Bud, my 15 year old horse, which I have raised from birth and only seen twice in the last six years. He lives over an hour away and the last time we saw him was in August 2005, right before Samuel's stoma was taken down. Samuel loved Bud and Bud loved ALL the kids. He was still the sweetest horse and knew us as his family even though we hadn't seen him for three years prior. At any rate, I found a place just up the hill in the next town but it wasn't quite what I wanted. So while I talked to the people on the phone several times, I wasn't sold. Plus, I just had no huge ambition to do any of this moving or even to ride really. It just all seems to trivial. Mark thinks it will help me so much though so I put an ad down at the local gas station hoping to find something a little closer to home and a little cheaper too. There are so many places here with empty pastures. There is also a great trail that goes miles and miles that would be good for Bud to learn on since he is still pretty green. Well, no one has called. The other ads I had seen are WAY too expensive. So yesterday as I am browsing ads again, I find a new one I hadn't seen. It says it is in the next city over but claims to have tons of trails. It is a little pricey but I thought I would just call and see where it was located. I note that the phone number is the same prefix as ours so assume that owners must not live onsite or something. Anyway, a woman with a British accent answers and I ask her about boarding. The ad says there are only two openings at the place so I was very excited to find out she lives just a half mile from us which is within a ten minute ride from the trail and I could even bring Bud home. The lady asked me over the phone if I had issues with barbed wire. Hmm. That seemed weird given the price tag of the board but I started hoping we could just work out some pasture board since I know many who would have issue with the fencing. Also, it was curious that the lady told us that we could NOT ride on the property even though their ad stated they had a covered arena. . Well, we immediately hit the road to check it out anyway because I was most interested in trail riding anyway. I don't care about arenas or stalls too much. The place is lovely, tons of green grass and huge. The lady met us on the front porch. There was no barn with turnouts as stated in the ad, and no arena. All the pastures were huge and each horse was in it's own which I liked. The lady asked me how I found her ad and I told her Craigs List. She said she had NEVER put an ad on Craigs List. I told her what the ad said and we just laughed. Apparently when the ad was posted, somehow the phone number was transposed. Whatever, we had found the perfect place for Bud. It is everything I wanted. Private pasture, not near their house so we won't bother them if everyone comes out. Ten minutes from the trail, fifteen from home. We can put a shelter in the pasture for Bud to get out of the rain. We will be taking care of him ourselves. It is on a quiet road. The people have lived there forever and won't be moving anytime soon. They were both very nice and Mark and I liked them very much. It was perfect and I could actually feel myself looking forward to something. Kaysha really wants to ride and Anna is already a horse nut. On top of that, we can all hit the trail as a family, only I will be riding Bud and they can all ride bikes. Bud really liked following Mark on his bike many years ago. Just seems so perfect and something we can all enjoy together. The cost of boarding at the new place is identical to what we are paying now...read REASONABLE!
And of course, the lady asked how many kids we had. Mark said three and I said four. She asked if we were confused. I said we have one with Jesus. I cannot say it without crying of course. She immediately said she would have never asked that if she knew. Then she said, "Well you know he is just in such a better place and so happy now." This woman I don't even know then gave me a hug and a kiss and said she will be praying for us. I know we will be asked the number of kids we have many more times as we move on with our lives and I hope that everyone I meet is this wonderful when I tell them I have four kids, three on earth, one with Jesus. That was definitely a God moment. I cannot wait for the day I can say with a smile, "Praise God, I have a child in Heaven waiting for me, cheering me on, advocating for ME."
As we were leaving, we were all laughing about the ad having the wrong phone number. I told the lady that it was definitely a God thing. He knew what we needed and sent us there. Their place was everything we were hoping for and more. The people did not seem overly pleased that their number was on Craigs List though so I told them I would just e-mail the person running the ad and let them know. So, I came home and looked at the ad again. I started laughing. I laughed so hard that Mark asked me, "Dear, what did you do?" I showed him the number. The ad number ended in 6239. The number I called ended in 8239. The number in the ad was right all along. I transposed it. All of a sudden we REALLY realized how much God had to do with this. What are the chances that you would dial the wrong number and find exactly what you are looking for? We laughed all day. We smiled all day. I could just see Samuel up there laughing too. Playing a joke on my eyesight. God showed me yesterday that He knows everything about me. Down to the smallest detail. He does not want me drowning in a pit of despair. He is still up there and He is still in control. He is still MY Father just as much as He is Samuel's Father. He has given me something which will help us all heal. He Taylor made it down to the very last detail so that I would know beyond a shadow of a doubt that He did not take a few days off. He is real, not a figment of my imagination as things felt on Friday. He made His presence in my life and in Heaven clear beyond any shadow of a doubt. Even Mark had goosebumps. While it is not the family restoration I really wanted, it is restoring a friend.
While it is not giving me Samuel back, it is a lifeline, one God knows will give me some joy among all the tears that I have yet to shed. Bud can handle tears. Bud does not mind tears at all. And Bud gives hugs. Bud's registered name is NOT Bud. He became Bud when he became my friend. Bud is like a dog. Man's best friend. Bud is a dog in a horse's body. He does funny things that make you laugh and is gentle and kind to little kids and other animals. Mark met Bud when Bud was about a year and a half old. He would come to the barn to spend time with "us." One day while he was watching me play with Bud in the arena, he said,"You will be a great Mom." I laughed and thought, "Yeah right. Like I want kids." Funny how things change. When I called the lady who has been taking care of Bud for me all these years, she was happy that we can have him again after all these years. She was sad to hear that it only happened because Samuel has become a Prince in Heaven. But if I cannot have one baby, then at least I can have the other.......before he is dead too. As we were getting off the phone, she told me, "You know Bud is a once in a lifetime horse don't you?" Yes, I absolutely know. If he was anything less than a buddy, I would have never kept him all these years with the hope that all the kids could enjoy him. He is a gift from God. He saved my sanity 15 years ago and he will save it again and bring joy to not just me, but the whole family. We all look forward to spending time with Bud, riding horses and bikes, and I cannot wait to bring him home just so I can sit on the steps and laugh at a horse in my front yard. I will have to remind him that windshield wipers are NOT food since he thinks they are toys you eat.
So, as long as the weather is good, we are going to get him next Saturday. We will be bringing him home. Finally, after six years. He will be so close, it is just unreal. And I actually cannot wait to get him. I feel joy, and we are still laughing at "what I did." Joy at what God did. I know Samuel is laughing too.
God is still in control. He is still all knowing. I am going to do my best to TRUST that He made the best decision for everyone by NOT healing Samuel here. Just typing that brings the tears still. God showed me yesterday that He KNOWS me down to the core and reminded me in that instant WHY I need to trust Him. He is in control. God gave me more than just a "consolation prize." It was a message from Him to me about trusting him. Trusting Him who knows ALL. Trusting that He still hears even the simplest longings in my heart and knows just what I needed at that moment. So much of what I was shown yesterday is still rolling around my mind yet to be processed and words fail to describe. But that was certainly the loudest God has ever been in my life. Perhaps He was talking to me Friday but I didn't hear through the sobbing so He had to make Himself a little more clear. Trust is a work in progress for me at the moment since my head is good and clear but my heart is broken. But then, isn't that what God expects us to be? We are all works in progress. Samuel's work here is done and I am trying to accept that as best I can. I am trying to move on. I am throwing what little I feel I have to offer God right now into His lap. I am putty in His hands. Mold me, shape me, show me what You want me to do here. Truly, I am broken and easy to mold at this moment. Praise God that I don't have to know it all, do it all, or understand it all right this very moment. I am going to continue to trust Him as I have always done in the past. Through the tears, through the pain, through it all, I will praise Him.
Thank you all who stand beside us, holding us up in prayer. We need you so much and thank you for being here.
And to my sweetest man in the world, you still make us laugh! We know you must be pestering God advocating for us now. We miss you SO MUCH. We love you SO MUCH. We cannot wait to see you again.
5/29/08
Yesterday was brutal. Today isn't much better. I hear the primal scream from labor and am as helpless as I was then to do little more than ride it out. Two days ago, I wasn't doing so terribly but there just seems to be something about Wednesday and Thursdays. I realized this morning that yesterday was the four year anniversary of Samuel losing his colon. And then it dawned on me that perhaps that horrible mourning gut wrenching kick you when you are already defeated feeling could have been because of the day. Only God was kind enough to not add the significance of the day to the burden which was yesterday. Four years ago yesterday was the beginning of the end for Samuel. The damage done to his body before the surgery and loss of his colon was insurmountable. I will never forget the surgeon coming in to tell us the bad news interrupting a "Care Conference" which was going nowhere fast. He looked sick when he entered. I will never forget the first words out of our Onc's mouth. "I have never had a patient lose hi WHOLE colon before." As if it was a remarkable thing. I thought I might throw up. Mark asked about what Samuel's quality of life would be and we were told that after an adjustment period, things would be okay. Well, as we all know now, some four years later, the adjustment period meant more and more suffering and he NEVER had a normal life again. I remember the sick feeling I had upon receiving the news. Sick. I feel it now. It was like a part of me knew that it was the beginning of the end. They brought Samuel back shortly thereafter and I walked out of the conference leaving everyone behind to be with my boy. It felt like he had been mutilated and after reading the OP report, he was. His body had been mutilated by chemo. Most likely aided by the massive ABX and narcotics. I remember sobbing at his bedside with my Mom and Mark trying to console me. I remember being thankful that Patty was our RN that day because she was one of our favorites. I remember having to leave him that night since we were unable to stay with him at night in the ICU. Just another brutality, leaving him like that. I chose to come home that night rather than staying at the parent apartment. I needed to be with Mark and we were just dying inside over the whole thing. It felt like death on that day. And that was only the beginning of a long list of complications to come. My baby. My baby. Why? This complication ultimately took his life but his will to survive, "for us" allowed him to live with the suffering of it almost four years. And here I thought I wasn't going to allow myself to relive the past. This was the pivotal day for us. The day you know you can never go back. We knew it in our hearts. But the complications just kept coming after this brutality and we were never allowed more than a few days to process this loss. That day changed our ability to treat his leukemia because of the gut demise and made it impossible for us to keep him in remission in the end. It wasn't the cancer, it was the chemo. Brutal. Lethal. I have no doubt that Samuel would be alive and in remission today had the damage to his gut either not occurred at all or was less severe. I am certain the entire extent of damage was never even mentioned in the original OP report. Just the look of horror on the surgeons face was enough. The way his voice shook when he told us. That said everything. May 28, 2004. That was the day that changed it all.
Today is now three weeks past Samuel's rebirth into the Kingdom. Things are much more emotional difficult at this moment than they were the day he left us. Reality is sinking in. I woke up at 2am, Samuel's usual play time at the end, then at 5:15am about the time he told me he needed me for the last time, and then just after 6am, the minutes after he passed. Why do I have to relive this over and over? I want to forget it, and yet I don't. All that has been robbed from us is sinking in. I miss him so much and it is an agony which can only be described in groans, moans, horrific animal utterances that the human brain cannot put into words but the spirit understands. He suffered so much to be with us. As I was finishing up his baby books, I realized how different "baby Samuel" was than Samuel at age 4, or Samuel at age 6. I am thankful that baby Samuel did not die in 2004 because while he was special beyond any measure I can describe to you, we were only just getting to know his amazing spirit. The 5 year old Samuel who could have an adult conversation with you is something I will always treasure and miss. The 6 year old Samuel showed me that even a child's mind can differentiate between spirit and body is a lesson I will never forget. He touched the very depths of my heart, and that love made the impossible possible. Even if just for a little while. His love for us was much different than the love we feel from our other kids. Much more all knowing and mature. he had a compassion that none of the other children posses as well. Perhaps they will find it with maturity. After all, they are still children. He was forced to be an adult and we gave him as much control in the decisions made over him as we could. I remember an X-ray tech trying to console him several years back saying, "It's okay, Mom, tell him it is okay" while his gut was twisted in knots and he was miserably crying trying to hold still for them and I had to correct her. "No, it is not okay." I never told him it was okay. I told him, "Mommy's here. I am here with you. I am right here." Isn't that all anybody needs anyway? We all want to know that somebody is here, right beside us. Perhaps they cannot make it okay, but the fact that they want to bear the burden by being near means so much. The x-ray tech later apologized to me. None of this is okay. We are not okay. This will never be okay. Samuel's suffering on earth will never be okay. Knowing that you all, near and far, stand beside us and want to bear the burden helps more than you know. Thank you for that. Throughout a lot of this journey, you have held us up with the love of Christ and it is overwhelming and heartwarming to know that there are people who we won't meet until we get to Heaven who care.
I continue to rejoice and praise God that Samuel was spared any further months or years of suffering because of one monstrous day in history. I continue to imagine what he is doing in Heaven and how one day he will show me around. I am certain that he will have so many friends that it will take me ages to meet them all. I cannot wait to see his smile, hear his laughter, and see his body in perfection. I remember some MD asking about Samuel's medical history at some point during all the drama of 2004 and I told them, "He was perfect until we got here." He is now perfect again. I am so proud that during the worst of times, his spirit was never tainted. I cannot say the same for mine. Samuel is first and foremost, God's child. God entrusted his care to us. We did all that was asked of us and for that have been blessed beyond measure by Samuel's love, strength and spirit. I have to believe that God views earthly death differently than we do. For He is reunited with the spirit He gave us six years ago. He was Samuel's Father long before me. Samuel's job on earth is done and he certainly gave everything he had. I am so glad he was mine. Mark asked me just the other day, "Can you imagine if he was that perfect and was someone else's kid?" He was mine, ours and ultimately God's. We were just the stewards of his earthly existence. I don't think I have ever in my life felt such joy and such sorrow as extremely as I have through Samuel. I am forever blessed by that. I remind myself of this huge blessing with every tear. I couldn't feel this agony over just anyone.
Anna dreamt of Samuel yesterday. He was playing with her across the street with the neighbors. Something he has seldom done. And he was her best friend in the dream. I haven't dreamt of Samuel since Mother's Day so I was a little jealous and yet happy that she is keeping him alive in her mind. I was especially happy that the dreams are of play, not sickness or suffering. All Samuel wanted to do when he was here was play and be normal. His dreams were of that very thing. But inevitably, her dream made me tear up. She asks, "Why are you sad?" I say, "Because I miss Samuel." She says, "Well, I am still here," and gives me a hug. Anna, the one I thought would be least affected by this, is the one most affected and comforting to me. And yet, now I have this four year old who really doesn't need me. Neither do the big kids. They have not only lived without Samuel, but they have lived without me because of the level of care Samuel needed. I am trying to figure out where exactly I fit in to their lives. It is strangely odd. Samuel was robbed of his life, Anna was robbed of her infancy and preschool years with us, and I was robbed of both of their early years. I enjoyed Samuel's infancy SO MUCH. I never enjoyed Anna's after Samuel's diagnosis. There was no enjoyment in anything for so very long. And now I look at all the broken pieces of our lives and have no clue where they fit. Anna seems to be slowly realizing she has parents again. She actually asks us for things rather than Kaysha. Kaysha's burden has been great in this as well being surrogate mom much of the time. Now that she is getting older, I think she will happily relinquish the parenting back to me. Thankfully I don't have to figure this all out overnight because I am not making great progress at the moment.
I was doing a search on Amazon for a specific book recommended by a fellow grieving mom. As I was browsing the list which came up, I get to "I love you" rubber ducks. How the heck did this get into a book search? Samuel perhaps sending me another message? Oh yes, I love you rubber ducks is definitely a Samuel thing. I opened the ducks just to read the description to see if any of the keywords I plugged in were in the ad. None were. They are party favors. Party favors from his birthday in Heaven? Symbolic nonetheless. My sweet boy sent me another message I would definitely notice. I probably should have bought them but I did not need 12. Later this afternoon while I was forcing myself to do laundry, I found one of his plastic bugs from a book long ago thrown out. Where did that come from? A spider. And it looks like someone was chewing on it's face. I thought these all hit the garbage by now. God knows I don't need any more things bugging me. But that is Samuel's humor. The last thing I pull out of the washer is a spider. Perhaps I will do laundry more often to see what other treasure might pop up.
We continue to covet and appreciate your prayers. We continue to be overwhelmed by your compassion and support. Thank you for that. Sending our love right back to you.
5/27/08
"I miss Samuel. I miss my baby. I miss Pooper. I miss my beautiful cutie, the sweetest man in the world. I miss my little nutty." It doesn't seem a second passes that I don't think one of these statements. I don't think my contact lenses have ever been so clean. The longing for his spirit I feel often takes my breath away. I wish I could just step out of my body and take a break from the sadness. It is that overpowering at times. And yet, I would not wish him back here into that body for anything in the world. I rejoice that his suffering is over. I just miss him. I miss Samuel, but I don't miss the suffering. It will be a great day when we are reunited and he has a perfect body. Then we can just enjoy each other for eternity without the fear of what if's ever present on earth.
I have been trying to stay busy this week. I spent the latter part of last week getting all Samuel's video's off this site and burned to DVD so I don't need a computer to watch them. Boy was that a pain and encompassed about a day's worth of time to get them all on and playing right. They actually look pretty good on the TV considering I took them all on my little digital camera. We all sat down and watched them over and over and it really helped with the longing for Samuel. Hearing his voice, seeing him play and have fun helped me feel less alone. Anna really enjoyed watching them and I think they will be good for her to watch over time so that she does not forget him. I have yet to burn the home movies to DVD but probably will this week. Last Christmas was the last video taken and Samuel had the best Christmas ever so I know this will be a gift. Over the weekend, I took all my pictures that have yet to be developed to the store so I could start working on them too. There were about 1,000 pictures that we did not have developed. That was over the past 2.5 years worth. I got them back in a huge box so I have been working on both Samuel and Anna's baby books. Anna's has never been touched as she was six weeks old when Samuel was diagnosed. So I have a lot of things to do with hers. Samuel's have barely been touched beyond the first six months of his life. One is birth to five years and the other is birth to adulthood. Many of the pages will never have anything to put on them. So, it is the birth to death book instead with all the last pages filled with all his duck pictures that I always intended to make into a collage for his room but never had time. I made myself a mini album to carry in my purse and it was really hard to narrow down 24 pictures because there are so many great ones. I am going to make one album with just hospital pictures and other obvious sad pictures and keep them separate from all the happy ones because they are so hard to look at especially now that he is gone. They were much easier to bear when he was here. Each of the kids will also make their own memory book as well.
Mark thinks I am torturing myself looking at all these pictures of my beautiful boy. And he was truly beautiful, even with all the scars. It is slowly sinking in that he is gone and it is a hideous feeling to have to deal with. One of the social workers where Mark works says that he always checks in with parents at the 8 month anniversary of a child's death because that seems to be the worst time. I figure that it must be then that if finally sinks in entirely that they died. And of course, that time for us will be Christmas and New Years so I don't think you can go with the eight month theory since holidays are always hard anyway. He never ate food with us so at least the eating part of the Holidays won't seem unusual. Even eating at the table now is not unusual since he rarely sat up with us. It is just the "everything else" that is lonely. Mark said yesterday that it is very boring here without Samuel.
I have managed to keep my mind off the tormenting of much of Samuel's life over the past week and that has made things easier to bear, if that is possible. Not dwelling on the past sufferings and only dealing with the "missing him" Is easier. I continue to think of his last month on earth though and sob. It is amazing how quickly the riding a mile on the big wheel turned into a fentanyl drip and total gut death. The pictures on this page are killing me and I will be archiving this page soon. The pictures I took from May 5 and 6 where he was busily getting everything he needed to do done leaves my emotions confused. He did all that for me. It seems like God woke him up and told him to spend every last second with me, color me everything he could because it would have to last until we meet again. On May 5th, he never took a nap. That was the day he was supposed to go to sleep and not wake up. He wanted me no more than two feet away at all times and he colored, visited, watched TV, talked to us all about Heaven, food and said he would check on us every day. When I got out the camera, he promptly sat up and gave me all the smiles he could even though he was still hurting. He did it for me. He tried to seem as "normal" as possible for me. And you can see all the edema in his face, he was not normal. Far from it. And yet, he spent that day with me. Made everything for me. We hugged and kissed and I cried in his lap. He left here knowing how much we would miss him because we grieved for him, in front of him, for weeks. On his last days he was still trying to spell words and read. He was telling me to find him a "three horn" costume for Halloween on ebay. He was anticipating his birthday party as soon as he felt better. He was still talking to Kaysha about making his cake. And he could not even eat. And then there is that last picture, the one where he looks perfectly fine. No one knows how I even got that. Coloring his last picture, one of my favorite Pokemon. Coloring it for me. He even got off the couch and sat on the floor to color that. He was still walking on that day to go to the bathroom because he wanted to be a "big boy." I don't know what to do with these particular pictures now. I am glad I took them and they really show his spirit true but for now, they just kill me. His beautiful face in these cannot hide all that is wrong. You can see it by looking at him. And yet, he is smiling. For me.
Mornings are hard. Especially if I wake up between 5 and 6am. I just remember his last moments. So I try to sleep in now because I can. The memories are getting a little easier to bear, but even so, I am haunted by them. Dealing with his pictures from happier times is helping wash away the tears from this. Late nights are also hard especially if I am up alone. When Samuel was feeling good, he would stay up with me. Until I went to bed. He was my buddy. I never stayed up late alone unless he was doing better because when he was doing poorly, I was way too tired and went to bed with him. It has hard to believe he has been gone almost three weeks. Time seems to be passing quickly somehow and I think it is because I actually get to sleep through the night now. For the past several years, I would get up several times a night to help him get to the bathroom, or change diapers and that was on a good night. Then there were those other nights where there was no sleep and one day for me was really several days combined. I enjoy sleep. I haven't dreamt of him much though which is highly annoying. You would think someone you think about all days would be in your dreams. But no, last night I dreamt of how much I miss him. That was NOT helpful.
Going places without him is easier now that we have done it several times. We are still running into people who don't know and that is hard. Mark tells them. I walk away. We got together with some old friends over the weekend who were camping nearby. I haven't seen them in a year but we have known them since before Kaysha was born. We had a nice time visiting and they had all met Samuel. So we talked and we cried and it was actually nice even though it was emotional at times. I think it helps if I am not the only one in tears. We were able to stay and visit for hours because "we could." There was no one who needed special things, special food, four trips to the bathroom or was hurting. Over the past weeks, one really obvious thing is how easy it is to go somewhere at a seconds notice, how easy it is to stay for hours without a problem and how much free time there is in a day. So much has been robbed from our life without Samuel and yet so much was robbed when he was here. It was robbed from all of us and most of all, from Samuel who was always hooked up to something, hurting, and had no freedom.
I want to share with you some things I wrote in Samuel's baby book. From 7/4/2002 when he was less than three months old, I wrote, "You are my gift from God. Only He could love you more." From 8/18/2002 when he was almost four months old, I wrote, "You are the sweetest man! I keep looking at you and cannot believe you are mine. You seem so wise, so happy and love it when I talk to you. I hope it will always be this way. I love you so much. You are growing way too fast." Everything I wrote was and is true to this day. I am so lucky and blessed to be his mother. Whether he be here with me or in Heaven, I am blessed. I was chosen to take care of a very special soul who gave me more in six years and 17 days than most people give in a lifetime. How I love this child! Usually you make baby books with the anticipation of the baby growing up and having it one day. At least that is how the ones I have work. Now, I guess I am just making them for me. I always thought one day I would have to explain to an "older" Samuel, everything that has happened to his body. He could read it from the journal entries of this website, see it in pictures and hear it from us. Now, that burden is on God. He can explain it to Samuel. All of it. I wish I could listen in on that conversation. Finishing his book is giving me something to do which fills my time with him. A new labor of love, putting the memories in order, cutting out the parts I don't need to be reminded of daily. One thing the pictures prove, there was a lot of good amongst the bad. That is what I am trying to focus on and it is getting me through the day. A picture is worth a thousand words and even more memories. What is hard to swallow is that those words and memories will now have to sustain us. I will never take another picture of Samuel. How can that be? I am just glad I took so many when he was here.
Mark has been back to work a week now. I think it has been easier for everyone around me to function because they did things without Samuel much of the time. Mark has been his usual self, just perfect, telling me to "Do whatever makes you happy." So I have been. Trying to find projects that don't hurt so much and believe it or not, doing stuff with his video and pictures does not hurt as much as the scenarios that play out in my mind in those quiet hours of the early am or late pm. As always, I continue to draw near to God because there is great comfort there. Truly there is nothing else that comforts more than the presence of God. Nothing more comforting that knowing that one day I will be reunited with a perfect Samuel. The wondering of how long I have to wait is hard. Is that going to be a few years or ten. Twenty? Thirty? Forty?????????? Oh, that seems horrible. How am I supposed to live with the longing, missing, emptiness in my soul? I know it will improve with time. I have been through death and grieving before. Just not with a child. My child. My baby. I walk around and tell Mark, "I miss Pooper, " all the time. He asks me if saying it makes it better. I don't know. Getting it out helps I guess. I asked him how many times did I say I missed Delma after she died. He remembers a lot. Says I still do. But I don't do it every day. Now that Samuel is with her, I probably won't miss her so much. I keep getting little reminders of Delma. Just a few days back, I was cleaning the desk and a few cards from her fell out of a book. I did not even know they were there. Hadn't seen them in years. I haven't seen or gotten any more signs from Samuel though. I imagine he is busy playing with animals, running Delma into the ground. Good thing she has a new body! I imagine all the children there, who suffered a similar fate as Samuel are exchanging stories as they watch over their parents. They are probably still getting used to life without feeding tubes and ports. I am certain it is nothing less than pure joy. I think of all the food he must have eaten by now. I really hope and pray that Delma had a huge birthday party for him on the day he arrived and that even the dinosaurs came. I am certain the ducks and birds came too. I know he is loved because as I said in his book, "Only God could love him more than I." And after my love, there would be Delma's. he is covered well.
We want to continue to thank those who have sent notes or cards. I have a nice pitcher full of cards and letters in the kitchen and I read many of them over and over daily. You would be amazed how God speaks through your words and you did not even know it. I will treasure these forever.
Thanks also to those doing raffles, auctions, etc. for our family. Thanks to the ladies of Hyena Cart who have donated, sacrificed, and given of themselves to ease our burdens. I am sure there are other things going on I don't know about so thank you all too.
Some other cool things to mention. There will be a mass for Samuel in New York City on June 3rd. If you want to attend, please e-mail for details. I don't live in NY but one of Samuel's "friends" does and we appreciate the gesture. We haven't decided on a service at this time so this will be the first.
Also, a tree was planted outside of Jerusalem in Samuel's honor. Thank you. We think that is awesome! I know he would have thought that was cool as well.
Thanks to those who continue to check in, pray and think of us. We are doing what we need to do to get by. One day at a time. It is not easy, but then none of this has ever been easy. Knowing that Samuel is free, not suffering and watching over me, helps. Sometimes more than others, but it helps. Praise God, we have victory over death. Samuel was reborn into the Kingdom on 5/8/08. That helps.
5/20/08
The days continue to be roller coasters of emotions. I feel like we were snatched out of our normal lives some four years ago by a monster which has been chewing us and chewing us until such time as it spit us out and devoured Samuel. He is gone from us and now we are left to figure out the aftermath. And the question I am left with is "Why did it have to be so awful?" All of it. Start to finish. Everytime we thought we were getting somewhere, that we might escape the monster, we were sucked back in and chewed up some more. The pluther of awful memories of the past four years is so encompassing at times that I have literally hit my knees in tears for the long suffering of Samuel. The joy of his restoration in Heaven is sucked out of me by these memories. He is healed and free living the good life in Heaven and we are stuck with this? I realized yesterday that the horrible pit of grief I was living is was simply a demonic spirit preying upon me replaying the past over and over until I was a sobbing mess. It is over. Samuel is free. He and we will never have to do that again. Now that I recognize that demonic presence, I am fighting it. I refuse to be sucked in by it. It is a difficult balancing act though, but I guess after this, the one thing I have learned is to balance things out. Sometimes it is literally a minute by minute thing to pick myself up again. Those memories are of past, things we cannot change and I am certain Samuel knows now more than ever that we did the very best we could to make life better for him. He cannot be hurt by any of it now. I remind myself to stop dwelling on where he is not, but remember where he is now. I know that for as much as Mark and I did not want him to hurt while he was on earth, he would not want us to hurt now over things we cannot change. Much less be haunted by them.
In his last month, it was obvious that all of the "quality of life" we had been striving for all this time was not to be. At least not without a miracle from God. And even that would not have lifted the veil of what if's. Mark has said many times that the fear of relapse and what if's have been looming over him ever since 2004. Any family who has lived with cancer will tell you that fear never leaves. It is just another demonic spirit torturing us. Perhaps God knew we just could not live like that anymore. Mark and I knew the very day that Samuel vocally spoke out against being sick that everything had changed. The day he noticed and made clear to us that he noticed he had been sick a very long time was certainly a day which broke our hearts. A day which makes you ask, 'What are we saving him from?" Keeping him on this earth was certain to add more and more torment, pain and disease to his body. Setting him free to go to Jesus meant eternal healing, joy, peace and departure from a body which continued to fail him and in the end, showed us it would also break his spirit if he stayed in it. If you truly know Jesus and believe in Heaven, how can you trap someone in a body like that. And as Mark says, we could have drug it out. We could have tried TPN, more transfusions, oxygen, and the dreaded chemo and kept him here longer. But for what? Selfishness? I could never be that selfish. I would rather live with this pain in my heart than the pain in his body which would have broken his beautiful spirit. The day I told Samuel that only Jesus could fix his body in Heaven was one of the hardest days because we knew that he would have to leave us. It was time. The hardest thing I have ever had to do was to let him go, to tell him to go and certainly to have been there when he exhaled his last breath. I listened to a sermon today which talked about how God breathed into Adam's nostrils to give him life and the pastor went on to say that when you let out your final breath here on Earth, God draws that breath and your spirit back to himself. I felt that last breath. I felt God take Samuel. I am certain the greatest act of faith for both Mark and I was telling Samuel to run to Jesus. Telling him to go to a place we have never been and could not accompany him at the time. Telling our six year old boy to go to a place we have never been, only believe in. To leave everything he has ever known and fly. Samuel's greatest act of faith in us was to listen and follow Jesus. I got a note from my Dad who has been absent from this chapter of our lives but he wrote that "He was sad to hear Samuel was doing so poorly. He knew what a burden it was on me." Obviously, this is a person who doesn't know me. Has never known me and I imagine does not understand real love. Samuel was NEVER a burden on me or us. I would have cared for him and done everything God told me to do for as long as it took to see HIS plan carried out over Samuel's life. We would have given our lives for Samuel to not have to suffer another day. That was not to be. He was done here. God's plan for him on earth had been fulfilled. That said, he was NEVER a burden. He was a labor of love from start to finish. I feel sorry for my Dad to have never known a love like that.
Some people have told us that God will reward us for the sacrifices made to care for Samuel. I cannot think of any physical thing God could give me that would fill the hole in my heart. Material possessions do not satisfy. If they did, we would not think we needed so many of them. I know God truly knows what I need and that void can only be filled with love. I have said time and time again when holidays came and someone asked what I got. "It is not what you have, it is what you do." We know in our hearts that we did amazing things for Samuel. Things no one else could have done. Things spoken to my spirit by the Holy Spirit. I am not happy with things I have but I take pride in things I have done for others. Things done out of love. The love I have for Samuel will never be replaced but I can only think that if there is some earthly reward for all this torment, it will be in the form of some kind of love. I love my husband who is also my best friend and soulmante. I would be lost without him. I love my other children and hope that the bond with them that has been severed a little by Samuel's suffering will be strengthened and made anew. Perhaps one day I will be a grandma and experience that type of love which I am told is even greater than being a parent. Mark and I will have no more children of our own unless God really changes someone's anatomy back if you know what I mean. I know that all our rewards are stored in Heaven and I am trying to stay Heavenly minded so that I can continue to be grounded here. Grounded, not submerged and drowning in sorrow.
Be certain of this, I miss Samuel with every fiber of my body. I ache for his presence, his voice, his love, his playfulness, his brilliance and his joy. Mark went back to work this week and the loneliness for Samuel just eeks out of every part of the house. I just walked through the kitchen and for a split second, thought I needed to check on him because I hadn't seen him in awhile. Then, oh yeah, I guess not. Mark leaving us this week has been a little easier than it was when he left for one day last week. The kids are once again doing school and all those thoughts of what Samuel was doing when we were doing this or that lesson creep in. Anna is playing outside quite a bit either with the dogs or the neighbors and she still has moments where she will just say, "I miss Samuel." Today, she asked if she could wear his coat. Then she said, "Good-bye Samuel, I will see you later," as she walked out the door. Like he spoke to her and she responded. The big kids are doing well. Daniel says he is trying to be "cheerful" for me which is sweet because if you know Daniel, he is not overly cheerful. The kids were doing vocabulary a few months back and Kaysha's word was pessimistic and after she read the definition, she said, "Hey, that is Daniel." He also told me I could pretend he was six years old and call him Sammy. I had to explain to him that God made everyone different and you cannot just replace someone as sweet as the thought was. We will move on, it is just so strangely odd right now. There is no freedom without a price and right now, the price we are paying is a great one. Yet, I am trying to focus on eternity and keep from drowning in the black pool of sorrow because there are far too many supernatural things going on here and I don't want to miss them.
The presence of Delma has never been so evident to me as it has been over the past ten days. I am constantly reminded of her, feel like I AM her sometimes, hear her talk, see clothes in fabrics that look as if they came from her closet. Even the warm air outside smells like her house. The birds outside singing remind me of her and Samuel. The last full day Samuel was on earth, I wore one of Delma's shirts hoping he would sense her presence and that in some way it would be symbolic of the changing of the guardian. I know he would recognize parts of me in Delma for sure because I often do things and think she would have done the same. The raw honesty is definitely a Delma quality. She had no problem telling you the way things were in plain English. The day she died, I told her over the phone that I would make her proud of me. I feel her saying she is proud. Proud of him, proud of us and it is almost like she is wrapping her arms around me telling me she has my precious son and that is is okay. Just busy! I am sure he is tearing up the grass in Heaven with a massive army of animals following him. I was reading a non-fiction story yesterday and did not realize the name of the author until her name was spoken in the story. It was "Haydee." Do you know anyone named Haydee? In 2004, when Samuel started talking for the first time after three months of silence, he called Anna "Haydee." I spelled it exactly the same way. Now there is a name only he and I would know. I thought of it all day. When Anna repeats her prayers to me at night, I always end her prayers with ,"Say hi to Samuel, Amen." He hears her. I have read several accounts of Heaven and what people's names are. Some think you have a spiritual name different than your earthly name. I wonder if Anna's is Haydee. Interesting speculation anyway.
I want to continue to thank those who have been faithful to my request to send cards or letters to me about Samuel. So many notes felt like they were words given to you from God that you put down. They are healing my heart. Other than the question of "Why did it have to be so awful?" I also wonder what the heck GOOD came out of all this. It is hard to see good when you have literally been shaken to the core. So many notes of good have come and it helps heal my heart to see things have happened not just in the natural realm but also in the supernatural. Thank you to those who have done this and those who are going to.
Thanks to the many folks at Valley Orthopedic for the many overwhelming ways you are trying to help. It is amazing that a hospital we have never even dealt with is doing so very much to try to ease our suffering. May God bless the many different departments who have donated and offered support.
Stacey E. Thank you for finding a person who could make Samuel's most special picture for me a real piece I can wear. I don't know how you found this person or knew to do this. Must have been God. I also know you wanted to remain anonymous but this was just WAY too special for me to not know a name. There is just one special picture Samuel drew to thank me for helping him and it brings me to tears to think that it will be made into something VERY special and last a lifetime. I cannot wait to wear it. God bless you for doing this.
Thanks to those who continue to check in, think of us, pray, send encouragement, and sacrifice time, effort and cash so that our burden may be lighter. Many have written and ask if I will keep the updates going. I suppose I could just get a private journal and keep this to myself at this point, but I cannot read my writing anymore so that probably won't work. So I will keep this site going for a time but will probably change it a bit as Samuel's Update are now from Heaven and not from me. We send our love and pray God blesses all who continue to read and love us.
5/17/08
We want to continue to thank everyone for their love, support and generosity. We are overwhelmed with the outpouring of love and support. We have received many cards and letters this week that we will cherish forever. Many from people whose names we recognize who have followed Samuel's journey from the very beginning and many from people who have just "met" Samuel through this site. Thank you to those who have donated to Samuel's Medical Fund and have done or are doing fundraisers on our behalf. We appreciate everyone's efforts, sacrifices, time and generosity more than you know. And finally, thanks most to those who continue to pray for us. The days are so hard.
My Midwife calls the two week period after the birth of a child "The Black Hole." Everything changes and things feel chaotic until all family members settle into their new places, routines, etc. And for Mom, well, there is just more to do, nursing, changing diapers, staying up half the night, etc. It is all an adjustment and things just feel a bit crazy and off for a little while. Mark has referred to Samuel's death as birth in reverse and I can tell you that this is definitely the Black Hole. Only in reverse. I am sleeping for the first time in years. I am not up all night caring for someone, changing diapers, soothing them, cuddling them, or loving them. We just sleep. When I get up, there isn't someone who absolutely needs me to help them start their day. This house and it's occupants run on their own now. There is no monitor on so I know when Samuel is up and needing me because he cannot walk without help. There is no Land Before Time music playing in his room non-stop. Instead of a new life, there is a loss of life. There is a Black Hole. Getting used to a new life in the house is a lot faster and easier than getting used to a life lost. The emptiness I feel and sense are overwhelming that it literally does hurt to breathe.
I never left Samuel except when I was forced to. Either by surgery, sedated procedures or very early in 2004 when we were not allowed to stay in the ICU with him. Other than that, I never left him. I never went anywhere without him. If he could not go out, we stayed home. This week we went to Fred Meyer. The first time I have been there without him. Mark thought everyone would know without asking then because I never left him. It was a very sad trip to the market. I know there will be many more trips like these. Yesterday, we took the kids to Seattle to visit the Aquarium and take a Ferry ride. They have literally not been able to do anything fun with us in years. I missed Samuel so much. I saw little two year old boys with their parents enjoying all the sea creatures and thought of Samuel's life being snatched away at that age. After he turned two, all we had to look forward to was a vicious cycle of surgeries, 20 or so in less than six months. Fighting for his life, dealing with people who claimed they never saw anything like what was happening to him. I looked at these little boys and realized all that has been stolen from us. While the kids seemed to enjoy the outing, I cannot say that I did.
I looked up into the sky and knew that he is free from all this now and while that helps a lot, it does not fill the empty Black Hole. It does not seem to stop the neverending vicious cycle of horrible memories of some pain he endured or some long period of suffering he went through. I seem to just have flash back after flash back of some horror. And yet, while this pain feels unbearable, the memories of 2004 and that horrendous roller coaster ride was far worse. Not knowing if he would survive, if he knew who we were, the comatose state, all those surgeries, never knowing if he was hurting because he could not communicate, being told he was going to have brain damage, complication after complication, never knowing if he would ever come home. And worst of all, those times when I had to leave him. Those days when Mark and I changed places for a little while. Not knowing if he understood any of it. Leaving him and the worry and torment of that was MUCH worse than this. He was a little baby then. Yes, that was worse. At least now I don't have to leave him. In reality, he has left me. He had to go. That is obvious. We could not go on like that. That is obvious. God ended it. The aftermath is still horrible.
All these "fun" things we can do now were things we longed to do as a complete family. Not a broken one. We are doing these things for our children, not so much for us at the moment. They deserve to have a life now. But for me, it is so hard to move forward without the one I never left. I am certain he is watching. I don't think you can spend that much time with someone and just go to Heaven and lose interest. I know he is watching us all. But it still hurts, it is lonely, empty and cruel.
I spent a little time sewing this week. I would look at the place where Samuel used to sit and visit with me while I worked and he colored, sang songs or watched TV and tried to keep my tears off the merchandise. He was the inspiration for that business. Without him, it would have never been. He used to love to look at the carriers before they shipped. All these things made his life better. I have to move on. I know that. But right now, there is no joy in it. To be fair, there is not much joy in anything. I know one day, there will be joy again, but for right now, everything feels wrong. For now, nothing helps....for long. You can try to stay busy, but the pain finds you. I wish I could go somewhere and get away, but you cannot hide from the pain, run from the pain or even pretend it is not there. It is there. I wish I could think of something that would help right now, but pretty much my only options are time which will eventually take the stabbing pain away leaving only a dull reminder, or the rapture where we will ALL be reunited. Won't that be a glorious day!
We picked up Samuel's remains this week. If you were in denial, picking up your dead son's body in a 4x6x8 box placed in a gift bag of all things, will really drive the point home. We hope to move to a place we love, and plant a tree in Samuel's honor and place his body there. A Monkey Tree seems to be a great symbol for him. I still have his placenta in the freezer for fertilizer. For now, his body is sitting with his most loved stuffed toys in my room.
Samuel's cremated body weighs about five pounds. We figure he weighed about 35 pounds when he died at age six. He weighed 34 pounds at age two when he was diagnosed with leukemia. Sickening. At least I don't have to worry about him not growing right anymore. I am sure he will be the size God intended now. I spent some time looking back at pictures from the last few years and realized how much more mature Samuel looked on his fifth birthday than on his sixth. A year ago today, we thought we were going to make it. We thought all we had to worry about was his butt closing down. He was able to eat and poop and be happy in May of 2007. It felt good! Well, it felt good to me. Mark says the worry was always looming over him.
As hard as I tried to save his gut, it still died in the end. Samuel needed all those drugs in such high dosages because even though they are IV, you still need your gut to synthesize them. People with severe damage to the small intestine will still starve to death even in IV nutrition for this same reason. I talked to the Onc Clinic this week who said that Samuel was on enough Fentanyl to sedate an elephant. When he changed to dilaudid, they dosed it to match the ending fentanyl dose and then it ended up going up six times higher than when we started. And that in the end, was STILL not enough. The clinic had never seen anything like it. Obviously, their kids usually die from cancer, not from a rotting dying gut AND cancer. Hospice said that they would have to rewrite the records of dosing narcotics for kids after Samuel. Isn't that his life story? No one has ever seen anything like it? No one knew what to do with him. He and we are free from that now. Two days before he left us, he grabbed his port and tried to take it out saying "No more port medicine." He got that wish and more. Mark does not miss the port and none of us miss all the IV crap or that NG tube. No kid should have to live like that. I guess God felt the same way. He doesn't have to live like that now. I guess I would rather live with the grief and loss than the worry and helplessness not to mention frustration of asking people for help and them either refusing or not knowing what to do. It is miserable, just in a different way. And he still wanted to stay. That is the saddest part. He had such a miserable existence and he still wanted to stay. I understand why God had to stop this.
The glass jar we have been stuck in has been removed. We are free. Samuel is free. We just always hoped it would be together. I miss him so much but I don't miss what he went through. I would not bring him back to it for anything. I would not wish it upon anyone. I wish I could forget a lot of it. Time does have a way of white washing things and I look forward to the time when awful things from the last ten months are a lot more blurry. I just pray that the good things and times will become more clear. I pray that the Black Hole will someday not feel so dark, empty, lonely and cruel. Until then, I will continue to look up to the Heavens and remind myself that Samuel doesn't have a care about any of it anymore. He said it was worth it. One day, I know he will wipe all my tears away and I will not be tormented by this anymore. I long for that day.
5/14/08
Samuel sent me a message. I had to share it with you. Many people say they get signs from loved ones who go to Heaven and I have been wondering how I would "see" a sign since I am legally blind. My sign would have to hit me over the head so I would notice it. Samuel is so smart, he found a way to give me a sign without having to see it at all and in a way I would KNOW beyond a shadow of a doubt where it came from.
This morning at 2:15am, Anna, wearing Samuel's dino jammies, came to wake me up to say that her music wasn't playing. All the kids sleep with music playing. Samuel used to get up to get me if his music stopped playing in the middle of the night so I could restart it. This totally reminded me of him waking me and even the time, the 2am hour was right. Anna was listening to a CD but her CD player doesn't work quite right so I turned on the radio instead. The song playing was "The Dance," by Garth Brooks. I haven't heard this song in ages on the radio. It stopped me dead in my tracks. I love this song, owned this on tape when it first came out. My brother and I shared the love for Garth when we were young adults. Now let me say that I LOVE music, LOVE to sing and stopped listening to music and signing when Samuel was diagnosed because as Trisha Yearwood says, "The Song Remembers When." I did not want music haunting me from this time period so I have not really listened or longed to sing much. I immediately KNEW this came from Samuel who was helped by my brother Jason to pick it out. Something old enough from a MUCH happier time period and a song I truly LOVED. There are not very many songs that would stop me and make me immediately think they were sent. This one did. I know where it came from and that my brother helped pick it out. Those two must have watched my day yesterday and I can just hear my brother saying, "Well, we have to do something about that." I know Samuel would have asked my brother what to do to send me a sign I would not have to "see" because Jason was also legally blind. Jason would know exactly what I would need and picked out a song from his and my era. That just proves to me that they do watch, they know exactly what we are doing and they intercede for us.
I might add the song to the page once traffic slows down but for now, here are the lyrics.
THE DANCE by Garth Brooks
Looking back on the memory of
The dance we shared beneath the stars above
For a moment all the world was right
How could I have known you'd ever say goodbye
And now I'm glad I didn't know
The way it all would end the way it all would go
Our lives are better left to chance I could have missed the pain
But I'd of had to miss the dance
Holding you I held everything
For a moment wasn't I the king
But if I'd only known how the king would fall
Hey who's to say you know I might have changed it all
And now I'm glad I didn't know
The way it all would end the way it all would go
Our lives are better left to chance I could have missed the pain
But I'd of had to miss the dance
Yes my life is better left to chance
I could have missed the pain but I'd of had to miss the dance
My baby said he could have missed the pain, but he would have had to miss his whole life with us. I never have listened to the lyrics of this song and thought of them being said by a six year old until now. This goes along with the word I got from God days before Samuel's spirit departed saying that Samuel chose to suffer to stay with us. God did not choose to allow him to suffer. God does not give us suffering. Certainly Samuel was afforded many opportunities to leave us and he stayed. He did not want to miss "The Dance." I continue to be overwhelmed by his spirit, his brilliance and his love. I really needed this today. It helps me heal from all the suffering Samuel went through. He said it was worth it. Can you even wrap your mind around that?
As I ended yesterday's journal, I was thinking that I would not have chosen to NOT have had Samuel to spare us the past four years pain and suffering. But I just wish that I could have changed that part, the suffering, the misery. I am so thankful to have had him even if for such a short time. I did not know how to put it in writing though. It makes sense in my mind, just not so much on paper. Today when I think of all his suffering, I hear him say, "It was worth it to be with you."
5/13/08
Five days today. I haven't heard Samuel's voice in five days. It feels so lonely here without him, but. Yes, there is always the but. I don't miss the pain, suffering and constant state of emergency. I read someone else's update site today and it really put things in perspective. They are rushing off to the hospital for some emergency after things seemed fine having their lives once again flipped over and over. I don't miss that. I don't miss the worry, fear, or Samuel's constant pain since no one seemed to know what to do for him most of the time. I don't miss it. I am glad he is free of all this torment. I would not bring him back to this life or that body for anything. But at the same time, I miss his joy. Joy he found the very second he stopped hurting.
Mark went back to work today. That was awful. Nothing like everyone doing their usual thing to make Samuel's departure even more hurtful. Mark works, the big kids play outside, Anna does her own thing and I take care of Samuel. Ooops. No, not anymore. He is doing fine, he doesn't need me now. It is pretty horrible. I hear the pains of labor screaming in my head because I MISS HIM. And yet, I am happy for him to be free. I continue to replay the last month of Samuel's life in my head and I am reminded of the fact that he is free of that torment forever. It is us who has to live with all of it constantly running around our heads. I called Mark at work mid-day to see when he would come back home. It remains so hard to do this alone. The big kids have seemingly moved on asking me why I am sad. That one really gets me. Oh, to be a kid! Anna is taking it worst walking around saying, "I miss Samuel, he was my best friend. But he is gone. He is never coming back. He is with Jesus." She is sad and she understands that she has lost someone. Thanks to all the staff at Ashley House who donated sick days so that Mark can take the rest of the week off and has a full paycheck from the last two weeks. We appreciate that so much. I feel isolated here even though the kid are home. Each has learned how to function without Samuel. They have been doing it for years since he was never able to play like they do. And if he was, it wasn't for long. Samuel was my best friend too. He was so much more than just my son. He is the first one I think of when I get up, the last person I think of when I go to bed and I spend all day longing for his company.
I called Children's to notify them of Samuel's passing so they could pick up his food pump. Apparently I own one and they own the other. Mary Bridge came for their IV crap today. I called Social Security to notify them of Samuel's death since he has a large bill to be settled with SSI. My GI e-mailed me yesterday to see how Samuel was doing. So I let her know as well. I also let our old social worker Mary know via e-mail. Mark and I haven't called anyone. People either know via the site, word of mouth from relatives or they don't know at all. It is not the kind of news I enjoy telling.
We have just a few things left to do in Anna's new room/Samuel's old room. When I got up at 1am to pee, I peeked in and felt much better about the room. It is bright and cheery now. From a dying boy's room full of dinos to a pink girls room full of dolls. Anna likes it and it is nice that she finally has her own space and that the space is bigger than a closet. I finished packing up all Samuel's blankets and bedliners. His bed has been made like a hospital bed for the past several years. He collected many blankets over the years both from loving people like you and hospital donated ones. They are all in a box. I think we have finally finished washing all his clothes. That will be the last time I wash them for him. I won't be making his bed anymore either. His special stuffed animals are next to my bed. We sifted through the toy box and got rid of a lot of junk there but left the big dinos which move and make noise for Anna. No one plays with them now. Daniel said it was too sad. Anna plays with them alone. There are no dino roars and footsteps up and down the hall now. It is so quiet. I am almost done with all the packing up of his things. Then what will I do? Go back to my normal life? I don't even know what that is or was. I think the majority of the adjusting going on around here is going to be ME adjusting.
We framed a lot of Samuel's fuzzy posters over the last few days. I am glad there were so many to choose from. He left us a lot of treasures and these posters are perfect for display. You can tell which ones were done when he felt great and which ones were done when he felt yucky by the attention to detail. My hall has a dino collage and our entry has one of the really pretty safari animal ones. I matted and framed his special picture he made me to hang over my serger so that when I work, I can look at it the whole time. Each of the kids picked out a poster for their room and we made one for each set of grandparents. That made me feel better for a little while.
I took two pictures of Samuel's body after his spirit left. I looked at them today. Somehow they just look like he is sleeping. He looked so peaceful and angelic. He looked happy. I went back through all the pictures on this site to look at sleeping photos and I could not find one which remotely had such a nice expression. Mark said he was smirking more than smiling. It is hard to wrap my mind around how his expression looked given the way his body had to die. As I continue to process this, I have come to realize just how lucky we were. We had lots of time to say goodbye. Everyone spent time with him. Samuel knew where he was going even if he did not understand it all. His spirit left us many indications that IT understood. He was "Samuel" until the very last moments still trying to play with us. He knew we were there with him the whole time. We know he knew and understood that we did everything we could. I asked him one day if he knew how much I loved him. The usual answer he would give was, "Yes, Mom, a whole buttload." But two days before he left us, he said, "Mama, I will ALWAYS know how much you love me." As he said that, he spread his arms as wide as he could and then gave me a big hug. He wasn't in an accident, he wasn't in a coma, he wasn't on a vent. He was fully conscious of who he was, who we were and we have closure. Now if those events would stop playing in my mind, it would be wonderful. And yet, they have repeated long enough for me to realize that we were very lucky to have had that special time. In the last days when Samuel spent a lot of time sleeping, he would wake and I would ask him what he was dreaming of. He was always dreaming of playing with his toys. He wasn't dreaming of torment, he was playing. In one dream, he was a Daddy. He always wanted to be a Daddy. In another he was dreaming of Reptar from Rugrats. That makes me smile to think that in all that pain, he was able to dream of things that make him happy. I am sure it was horrible to wake up to that body after being free in your dreams to play. I have heard from several different Christian speakers that the closest thing we as humans know to being free as spirits is our dreams. I continue to pray for dreams of Samuel.
We have received so many lovely notes and want to thank each and every one for taking the time to write. The children received a special package with keepsake blankets made specifically for each one with their name, Samuel's name and embroidered dinos on each. They love them. Daniel took his to his room and cried. Thank you for doing this for them. I know they will treasure them for years. We also want to thank those who have contributed to Samuel's Medical Fund. I am knocking down that debt and while money doesn't buy happiness or heal my heart, it will help dig us out of a gigantic hole. We pray that God bless each and everyone for their kindness and sacrifices to our family. Please continue to pray for us. There is a MASSIVE empty hole here. I know where Samuel is. He knows where I am. He is NOT dead, just relocated. I know that. My brilliant mind knows that. My heart, however, is broken. I cannot even find all the pieces to put it back together. I am certain Samuel took some of them along to Heaven. I am so lucky. "I" was his mother. I will always be thankful for that.
5/11/08
Happy Mother's Day!
It has been only three days. Three days. It feels like yesterday and it feels like it has been years ago that Samuel was here. Not including this morning, we have woke up at or near the time when Samuel's spirit left us and we relive it. This would be so much easier if the firs things we remember upon waking weren't the last minutes of Samuel's earthly life. This morning was different in that I woke up from a dream where Samuel was jumping in one of those gigantic jumpy things for kids and calling me to watch him. He was happy and I don't recall seeing a nose tube. If I could wake from those kinds of dreams each day, I can see better days in store. It is still incredibly hard to get past the misery and suffering he endured. Not just in the last month but the entire four years. We now get to deal with the aftermath and fallout from ALL OF IT. It is so hard to remember the good things. I know we will in time.
My Midwife called me the night of Samuel's passing and we talked for quite awhile. At the end of the call, she said, "You guys did good." These were comforting words spoken by someone who truly knows us. It sure doesn't feel good but I will take these words of someone who has been here longer than I and is obviously much wiser than I as a gift. She was here yesterday and told us that we are her heroes. We don't feel heroic either. Yet this is a person who has often reminded me of Delma and I could hear Del speaking through Toni. Perhaps someday we will look back at all this with their perspective and see what they see. Right now it just all feels awful.
For now, we are just keeping busy. We continue to clean out everything that reminds us of Samuel's suffering. I have been packing up his things, getting rid of the unimportant things and either boxing up the things he loved or were made for him or leaving them out in my own room. I am going to make one wall of my room a place to display his favorite treasures. I have been sleeping with his favorite duck, Sara. In the midst of all the bad times, he always went back to the duck. We are completely re-doing his room for Anna who has been sharing with Kaysha. Everytime I walk in to Samuel's room, I see suffering and death. So drastically changing it is top priority. Anna is excited to have her own space. I packed up many of Samuel's favorite clothing and let Anna go through and see if she wants to wear any of it since they were basically the same size. She chose some of his outfits which would be suitable for a girl and a lot of his jammies. She wore his Dino jammies last night and his Diego jumpsuit today. It seems a shame many of the new things will never be used but we are happy to see her wear these. I hope it helps her feel closet to him. I will save her all his shoes and coats as well. A lot of things he never wore anyway since he did not like clothes. I will pack up all his diapers, wraps and blankets for grandchildren one day. We are officially NOW done with diapers. Seems a bit bittersweet given he had to die for that to happen.
I washed all his clothes for the last time as well as his linens from his last days. I will pack up the special ones today. I went through his books and drawings and packed them as well leaving out a few masterpieces to frame. On May 5th, he colored about 8 different pictures "for me." I found the special pictures and notes he made me in December to "thank me for getting him better." Many brought back tears and Mark asked me why I do this to myself. He made these for me because he appreciated all my hard work. He had the maturity to understand. I miss that maturity. None of the other kids have such wisdom. I know he got his from his life situation but I miss our conversations so much. So many times, he was an adult trapped in a failing boy's body. I also packed up all his school books from the past year. Many were completed. The ones I just got this year with only a few pages done will be saved for Anna. Oh, how much I wanted to teach this child who was already so brilliant! He will learn in Heaven now.
I have walked around this house and tried to find places which don't remind me of Samuel's misery. His room sucks. My bathroom sucks. The front room where he spent his last month sucks. The kitchen sucks since he could never eat and in the end could not even be fed. That leaves the back room which we made into a playroom for them. He was only back there when he felt good. Our bedroom was a good place since he really liked jumping on the bed in there. And outside where he never was unless he felt good. I hate this house. So many horrible things have occurred within these walls. We do plan to leave as soon as we possibly can.
I woke up two days ago and thought "We set him free and he set us free." Such a horrible exchange for freedom for us all. And yet life is drastically different. My stress level once out of this world is nil. I don't have to worry, wonder and try to manage constant turmoil in Samuel's body. I don't have to live from adrenaline rush to adrenaline rush over labs, poop, food, pain or anything. We don't have to worry about when the next shoe will drop, when the next bad news will come, it's over. Likewise we are not trapped within these walls because he is too sick to go anywhere or has no WBC's. We can leave now. We can try to figure out how the pieces go into this new puzzle called our life.
Mark's parents came to get the kids to stay the night the day Samuel's spirit left us. We left this house and went out to dinner and did a little shopping. I felt like I should have worn a shirt saying, "My son died today, excuse the tears." I just could NOT stay in this house if we did not have to. We hit the bookstore and I picked up a book for Mark and I called "Heaven" by Randy Alcorn. It is excellent and totally cemented things I thought about heaven and opened my eyes to much I did not even think of. I would recommend this to anyone whether you have lost someone or not. It is a book of hope and is keeping my eyes on the reality here which is that Samuel is NOT dead, just relocated. He is healed, free, happy and can see me whenever he chooses. I know I have a great advocate in Heaven who will be checking in with God about us. No one will want to see justice served on the devil more than Samuel will. There are so many things to look forward to when we are reunited again but until then, I still have a job to do here. On the drive home that eve, our van was surrounded by rainbows for many miles. Samuel loved rainbows. I counted many pictures of rainbows in this box of art.
It is strange and awful without him here. I walk around and think, "I miss Samuel, but......." There is always a but. I don't miss the suffering. I don't miss the pain. I don't miss him begging for food and not being able to eat. I don't miss him screaming when he was pooping. I miss him healthy. There sure wasn't a lot of that. We realized the spirit hides so much. As soon as Samuel's spirit left his body, the horrific damage from four years was so evident that it will forever be engrained in our minds. The things he lived through were so well hidden by his spirit. There are so many harsh realities left behind.
The big kids are keeping themselves busy by playing outside and from my view, it was harder for them to watch Samuel suffer knowing he was going to die than it is now that he is gone. Anna walks around and says, "I miss Samuel. He is not coming back." She has grown used to playing on her own so much that even she is not feeling very lost. Mark and I are living moment to moment. We are keeping our mind on where he is, how he is and that he told us that he will check on us every day. We know where he is. We talk continually about what he might be eating, which animals are following him around, how many friends he must have by now, etc. I was never pleased about Delma being in Heaven until Samuel's spirit left. Now I am glad she is there. I know he is a little prince. He could not go anywhere here on earth without people wanting to give him things, so I know he is spoiled in Heaven. But oh, it is quiet here. We miss his laughter, jokes, running around jumping off the furniture, wanting to go to the store, coloring, games, everything. When I get up, there is no one that needs my help to start the day. He was the first one up, last to bed when he felt good. He was always with me or near me. There were so many things he only wanted ME to do. Our world revolved around him and now it doesn't. I will get off the phone and just for a second think I need to check on him. I have felt many times like I wasn't doing what I was supposed to be doing since it wasn't something for him. And yet, dreams like I had today will satisfy a lot. I know he is aware of us and I know that we will be reunited for eternity. We just have to go on living here until that time.
So we are doing the best we can. We are not sitting around sulking. We are trying to live as Samuel lived. None of us are sick, and we are not stranded in this hell house anymore so we are trying to get out and do things here and there. We hope to finally finish this house up and sell and move. We are talking about different activities to get the kids into so they can have a little more social life. We are talking about doing more camping and hiking because it is in nature where we feel closest to God and hopefully closest to Samuel. My Mom chose and paid for the big kids to go to camp for the first time this summer. We hope that we can get Anna into gymnastics. If I can watch her do that for about ten or more years, I would love that. I am also hoping to get my horse back up here so I can get away. Riding was always healing for me and we hope to make that happen soon. I just have to get myself out of this house and away from the memories. I am just thankful that I am not hearing screaming in my head or phantom cries at night. We have all been sleeping fine. As I have said before, there will be plenty of time for rest and tears of Samuel dies. And there is. I am just trying to keep it all in focus. I don't want to move on without Samuel. But we have no choice. So, we are trying. I don't know how I will feel tomorrow but I know today that we are setting goals for the future so that our other children will not continue to be shorted on their childhood or life. Samuel is a little prince and I know that he would want us to live as he did. In his words, "Daddies don't cry." or "Mama, are you crying again? Go do something on the computer." So here I am.
Thank you for all the continued prayers and love. This site has crashed several times in the last few days due to traffic. We know so many are doing great things to help our family and we thank you for your efforts. Thank you to all who have donated to Samuel's Medical Fund and for the cards starting to trickle in. Special thanks to the Mama on TBW who sent me the necklace for Mother's Day. I love it and it is SO me. Thank you to everyone who truly felt how special Samuel was and is. Remember, he is NOT dead. Just relocated. We will all see him again. I cannot wait to get that baby back in my arms. I seriously doubt he will let me call him Pooper in Heaven. Please continue to pray for us. Tomorrow is another day and we have no idea where our emotions will take us. Much love.
5/8/08 2nd Update
"Did we really just do that?" I have asked Mark this so many times today in reference to helping Samuel as his earthly body died in our arms. Mark said it felt like our homebirth experiences in that it was he and I working so hard to do something so important and yet so painful and Samuel working hard too. Difference is the end result. I haven't slept well in days, probably weeks really and today all my muscles feel as if I have just run a marathon. My leg muscles feel burnt. I cannot sleep as hard as I just tried and just need to get this out on paper. As honest as all the previous updates have been, I will warn you, this one will continue to break your heart.
The house is quiet today. There is no more screaming, no more pain, no more IV crap, and no more Samuel. It is so quiet. Yesterday was yet another day of suffering for Samuel. Once again, his drugs were not covering him. His dose of dilaudid was six times that of which we started with in the morning and it still was not covering him. It was enough to sedate him off and on but when he woke, he would whisper, "Help me." Like a ghost trapped in a body. "Help me." It was just another insult in four long years of insults to Samuel's physical body. Samuel's body got a fever by midafternoon that went up very quickly. He was unable to regulate it. His heartrate his 180 and remained there until he died. He was restless, his legs were restless and so was his spirit. We upped the dilaudid so much that he just started dry heaving so badly that we adjusted it back lower because that seemed worse than the pain at that point. No amount of anti-emetics even covered it. To those who sent gifts in the mail, he was able to look at each item and feel the joy of them, but unable to do anything but beg us to "help him. "
I took him to bed at 9pm knowing full well we were not going to sleep. All of my children were able to tell him goodnight, kiss him and tell him they loved him. I will never forget Daniel saying he would see him in the morning. I thought when he said it that he would be lucky if he did. I decided to try Tylenol and ibuprofen to see if I could get that fever or heartrate down and while he never puked them up, they did nothing. I don't think they were absorbed. Yesterday we went out to the box we packed of Samuel's keepsakes and brought in his first duck, "Quack Quack" , his Ocean Wonders Music Box, and his ducky leg pillow to help him feel more comfortable. That music box used to help him relax and sleep every time I turned it on. He only liked the Twinkle Twinkle Little Star Song though. I played it all night as we were up and down trying to ease pain, cry out to God and sleep. I pulled my cot right up next to Samuel's bed and lay half on it and with my head on his pillow, hand on his heart. He was up several times peeing and even pooped surprisingly enough. He still said, "Help Me." I told him to call out to Jesus for help and he did. All the fluid was peed off over the past day and his lungs were clearer than I have ever heard them. He was just SO hot. Samuel woke me up a bit before 5:30am and said, "Mommy, I need you." I wrapped my arms around him and he gave me the biggest strongest hug I have ever received. I kissed him and he kissed me and said he loved me. I continued to talk to him but noticed his eyes were drifting in and out, sometimes seeing me and sometimes rolled up. He stopped talking at that point even though I was asking him things. I realized I needed to get Mark. I ran to wake him. Samuel saw his Dad and said "Hi." We snuggled that boy, kissed him, talked to him, prayed for God to take him quickly, told him to go, held his hands and watched him drift in and out of consciousness. There were a few moments where he did Samuel things such as looked at his dad and blew raspberries with his tongue. That is how all his dinos fart in your face just so you know. He liked to do that to RN's. At another point he had both our hands and twisted them as if to break them which is another way he used to play with his day, hand wrestling. But then he would be gone again. All the time I held his hand, he was holding on for dear life. I changed hands a few times and had to pry his fingers off mine and quickly change to the other hand. I thought he was just going to stop breathing as his breath was so shallow but instead he had a seizure. It was awful and we were unprepared for it. It lasted maybe ten seconds but they are the longest ten seconds of you life. Even after that his heart pounded. He seemed to breathe louder after that and you could see the stress on his body and I think it was crying. It just killed me inside. We were hoping he was just not there after that. We paged the hospice RN who also hoped that Samuel left his body after waking me and giving that huge hug. She thought he might still have hours to live. We hoped not. I prayed my kids would not get up to this scene. Within ten minutes Samuel had another seizure. My hand was on his heart the whole time and I felt the breath leave his lungs and his heart stop. He was gone. The seizures were really the final insult to a long hard battle. The hospice RN was kind enough to say that it probably took a seizure to stop Samuel's will to live, to stop his heart. He was not just going to drift off into sleep and succumb. He went out fighting. But oh, I could have done without the seizures. We spent several minutes kissing him and talking to his spirit if it was still in the room with us. He will always know how much we love him. Samuel entered Heaven at 5:58am. About the usual time he would get up for the day. Well before the other kids got up.
We dressed Samuel as best we could and brought his body downstairs to lay him in his place on the couch. In a matter of hours, his face lightened up right before our eyes and a smile appeared on his lips. Everytime I felt his body, it seemed to respond to my touch though no one else felt it. I felt it. His smile was amazing. The Hospice RN arrived an hour after he left our world and did all the calling and arranging. SHE IS FANTASTIC!!!! We spent time with his body and all the kids came downstairs and learned the news. For the most part, we were all relieved that his suffering has ended. Around 9:30am, Mark carried Samuel's body out of our house for the last time handing him to the funeral home owner. That was very difficult to watch the child's body which came out of me, leave for the last time. Samuel's body looked like a person who has been in a concentration camp. His scars, deformities and bones broke our hearts once again to remember the suffering which came with each one. And if he looked that bad on the outside, how much worse was the inside. Mark removed Samuel's port and NG tube immediately after he passed. His NG was riddled with blood clots and the bottom was permanently stained with blood. The horrendous amount of suffering this child endured has hit us like a ton of bricks today. We endured it right along with him not able to take time to grieve for it before now since it just kept going and going and had to be constantly managed. Now, the totality of that suffering is upon us.
The kids are coping well and have been out playing with the neighbors. Mark and I have been cleaning out all the medical crap getting rid of all the evidence of medical failure. Samuel is free and we are also free of this lifestyle. We are free of the medical system which has failed us, our son, and our family. It is a system I despise and we are thrilled to be rid of it. What we will do with all the time we have no clue. I know I won't be spending it with people who have no clue how to help, give up, or stab me in the back anymore. To the few MD's and many RN's who helped us, THANK YOU. To the rest, good riddance.
We miss Samuel's spirit but we don't miss his pain and suffering. We miss the joy he brought to this house when he was feeling good. We miss his jokes and antics which he still displayed even moments before his body died. It was like he was watching us from above and thought we needed comic relief. I miss him so much already. I hear the screams of labor for my loss and yet we know he could not stay here any longer. He did what I told him to do. He ran to Jesus. We have peace about that part.
But, my God, I could have done without the seizures. Really. All I can think is that the devil was just like a suicide bomber. Kill horribly and cruelly if you are taking yourself with it. My thoughts are that Samuel must have been such a threat to Satan because so many have been touched by his life and spirit. We would like to ask those who have been touched, saved, or changed by Samuel to put it in writing on real paper, not e-mail and mail it to us at the PO box addy above. I have a keepsake box of every card we have ever received for Samuel from the beginning and I want to add them to this box to save for my children to read when they are older and understand. I would love to receive beautiful love notes to Samuel in the mail for a few weeks.
Samuel's body will be cremated. I am certain he will look down from Heaven and enjoy seeing that corpse burn. It failed him. I will never forget him telling me that his body was sorry. That body failed him and it failed us. It also failed to trap his beautiful spirit. We took his handprint and a lock of his hair. I kissed that lifeless body for hours before it was carried away. I wept for every scar. I caressed him and touched every part of him for the last time embedding in my mind everything I could.
We will not be having a service for Samuel immediately. We have decided to wait a month or so until the dust has settled, and see how we feel at that point. We will do something joyous which will not add to the scars in our hearts or those of our children. I will post on the site details when we make them final. We have taken on the burden of our son's care for so many years and we plan to take the next few weeks to rest, and try to deal with all the things we have never been able to deal with completely. Not to mention deal with the burden of reliving all of this again and again until it is settled in our spirit. I know Samuel is free. He can eat. He can run. He can play. He doesn't hurt. I know this and I am so thankful that the Lord has prepared a place for us to go. He has a new heavenly body which is perfect. He is NOT an angel in heaven, but a six year old boy who will be raised as such there until I am able to be with him again. He might be a big man by the time I see him. But my heart is broken of course for the boy I love who should have NEVER had to go through all this. The pain continues to come in waves for us all. It will be strange to switch gears after spending all these years trying to give him a life with some quality. I know we did or he would not have found joy so quickly when there was not physical pain. What a battle. What a journey. I am so thankful that I had him for six years and in awe, broken and humbled over how much he chose to suffer to stay.
Many have asked what they can do to help. Obviously pray for us to heal and get past the tormenting memories of the four years and especially last month and of course today. If you want to do something tangible, please consider making a small donation to Samuel's Medical Fund through the Paypal link above. In four years time, we have tapped out every known cash and credit resource and taken out a second on our home in order to be able to stay home and care for him. Being riddled in debt only adds insult to injury. No amount of money can cover a life and I would do it all again, I would continue doing it, if he had a fighting chance at a good life. Unfortunately, his body was done. It was finished.
We want to thank everyone who has supported us over the past four years. We could not have done this without your support. You have all held us up in more ways then you know. Our gratitude to you is enormous. We thank you so much for all the love and send it back to you a hundred fold.
5/8/08 1st Update
Samuel is free. He is with Jesus. At the very time he would get up to start his day, he left Mark and my arms to be with Jesus. After over four years of suffering, he is now free.
5/7/08
Samuel's dilaudid is now tripled compared to yesterday. Our Onc told us yesterday that the amount of Fentanyl he was on the day before would have killed an adult in less than an hour. His Dilaudid was dosed to match the Fentanyl originally so I am certain that the dosing as it stands now would easily also kill an adult. He is still breaking through with leg and foot pain. He has slept off and on all day and is easily rousible. He is talking better and we continue to "tag team" him so that he is never alone. Someone is always with him holding his hand, mainly me. He will surely run out of blood before his spirit is done here. I continue to draw blood out of his NG tube. It is old so somewhere in the small bowel is bleeding and it is no longer going down, but coming up. It continues to make him sick and we are doing all we can for the nausea. Mark and I really think that the IV ABX done last August and September destroyed his gut. Adding steroids bought us a few months of masking it but now the damage is done. Even if all his cancer died today, without a gut he will die anyway. We have no doubt that if his gut was not so damaged, we would still be living with our boy in remission but ultimately, it was the very first chemo in 2004 which set us up for this demise. We are thankful for the time we have had with this precious spirit and just thinking of the love he has for us to have chosen to stay and endure this is beyond comprehension. Much like the love of God. God did not do this to us or our child. We are not of this world, we are children of God in which Satan wants to destroy any way he can. Thing is, he loses in the end. My baby will fly free and healed very soon and all his cancer demons will die with his earthly body. Samuel has chosen to suffer and fight these four years to be with us. Think about that. How much must he love us?
Our RN came today and told me she thinks he has only days at this point. Days. These days are going by so fast yet so slow as we watch his body wither away. His spirit remains true and every moment he can, he is talking, joking and trying to make US laugh. He is the sweetest man in the world. We are so lucky, so blessed to have known a love such as this. He has taught us so much, given so much, and sacrificed so much to be with us. I have no doubt that if his body had any reserves at all, he would STILL be fighting and planning to stay.
I continue to pray that God honor Samuel's will and heal him here on earth. But as Mark and I have often said, he is TOO good for this earth. This child has only known physical pain. He has never known emotional pain or other hardships of life on earth. He can forget physical pain as soon as it is gone. Any slight relief and he is playing like it is his last day here. You don't get over emotional pain in the very instant it stops. We are so proud to know that we have given him everything we could give him on the earth. He has only known love. He will go to a place where he will only know love. Samuel is divine love.
Please keep praying and know how much we appreciate every thought, prayer and message. Much love.
5/7/08
Samuel got PLT yesterday although by the time we needed to leave, he had been sleeping several hours and was difficult to rouse. I asked him if he wanted to go in and he said he did. He slept the entire way, woke only for a few moments when we arrived, and never woke up again from about 2pm to midnight. If you moved him, his eyes would open, but no one was home. We all spent so much time with him last night just holding his hands telling him how much we loved him. It was VERY hard for my big kids who were warned that he might go to sleep and not wake up. To me, it was like the hydrocephalus in that he was still in there with us, but just could not talk or move. Our children learned last night that you come into the world with many people around to help and you leave the world with many people at your side. We are waiting on him hand and foot even when he is not fully awake or aware.
He woke up at midnight, sat straight up and told me he wanted to go downstairs. So we did. He was up four hours watching TV and playing with toys. His pain level increased to the point where I had to page the RN on call and we have now doubled his Dilaudid and it may still need to go up. His voice is so weak and yet his cries in pain are strong. Again like the hydrocephalus where it is easier to cry out than to speak in a normal tone of voice. This morning his whisper is louder but he is very weak and sick. I look at the picture I took yesterday morning and wonder how I got it. I know it was a gift from God because Samuel looks white as a sheet and his face is so swollen even though he is peeing like crazy now. The Hospice RN told me that in her experience people pee everything off in their last 24 hours.
This morning, Samuel is awake and watching Land Before Time. After last night's slumber, we are enjoying every awake moment knowing that this can surely change quickly. His labs show no pancreatitis so that only leaves dying gut as a cause of this demise. Things from his gut are now coming up to his tummy, not leaving through his anus and he is drinking water and getting sick and throwing up regularly. We are drawing things out of his tummy as much as possible and giving him zofran for nausea hoping to make this go down. What is coming up looks like bile and blood.
His body is ravaged and yet his cancer is still dying. His WBC yesterday was 200k. We thought it would be much higher. Still many signs of tumor lysing on the chem panel. His LD is actually down to 1k from 2400 last week. His chems do not look hideous either. Easily fixed if he had a gut. But he does not. His HCT was the most awful at 13 and he is losing red blood very fast. His PLT were 31, much more than we thought. It is only a matter of days if that without God's intervention.
Samuel is again saying he does NOT want to leave us and cried and said, "It is not fair." It was heartbreaking. Please pray for him to find the peace he needs to fly. Please pray for us as we are grieving already. The sorrow from my living room last night was just the beginning of what is to come. The sorrow runs deep and especially Daniel is very brokenhearted. Not only do we have to get ourselves through this but we have to get our kids through as well. We will miss this baby SO MUCH. We are still waiting for his miracle. We are also praying that Samuel find peace.
5/6/08
Samuel is up, watching TV and coloring a handmade Pokemon pokedex that Kaysha drew for him yesterday. He woke me up at 2am so we could play dinos for an hour and at the end of that, he said, "I think I need some benedryl, I might never go to sleep." Sounded like a great idea since I wasn't ready to get up at 3am. We both slept and got rest. He is not frantically pushing his button for more meds and is quite happy and back to the joking around boy we love. I debated on whether to keep him on fluids last night with the edema growing but opted to do so. I was very happy to change several VERY wet diapers and it again seems like he was not peeing due to pain. That fluid has to go somewhere. The edema does not look any worse today. He is still walking to the toilet and it is now obvious that his abdomen was very very sore previously because he is fully mobile now even with the spleen/brick. He is itchy and very sensitive to light. He asks why it is so bright in here even though all the lights are out and drapes are closed. I tell him, "drugs." So he keeps telling himself that it is the drugs that make things like light seem too bright. The benedryl is not touching the itch and I am really watching to be sure he does not itch skin off. He really needs a bath so we will try to do that today too. We are planning to go get PLT and I think I will get the labs done we vetoed yesterday because I really want to know if pancreatitis is involved too. He sure acts like it.
As I was coming downstairs to get the benedryl last night, I was thinking of how much Samuel has suffered and as we all ask, why? Why so much? Well, I got the answer. Samuel has chosen to suffer because his spirit wants to stay with us. He wants to be with us so much that he has chosen to suffer in order to do so. He has had many opportunities to die and he has always made it through even though the odds were against him. Even yesterday, he could have checked out on us. Certainly our RN thought once he was really comfortable, he would just go to sleep and not wake up. That hasn't been the case. He is more awake than he has been in weeks. He did not even nap yesterday. I think he is getting everything he needs to get done on earth done. It really seems like that last burst of energy people get before they move on. I sat at his bedside last night before he woke up at 2am and told God that if Samuel's will is so strong to stay, then send him a miracle healing. Anywhere, anytime. We will take it. Samuel is no longer suffering here on earth. I am thankful for that. We continue to take one day at a time with this most precious special boy who continues to teach me about love, life and death in ways I never thought possible. He knows it is okay for him to go to Heaven. I have said, "If you are going to stay sick like this, you cannot stay here. It is not fair to you. You have to go." He understands my words and still says, "Not today." Not today is fine as long as he is not suffering. Our Hospice RN's have seen to that really taking the reins of the med dosing away from the Onc at this point. We don't know how many more days we will get. His heart is beating strong but his tummy is now empty. His kidneys continue to work and his lungs continue to draw in breath though it sounds more labored by the day. He still has breath, he still has a will and with those things God can still change this at any moment. Samuel needs his miracle and it seems he is hanging on for it. Thank you for your continued support.
5/5/08 3rd Update
This is going to be quick. Samuel got his Dilaudid but did not go to sleep as thought. His Fentanyl was taken from a continuous rate of 12mcg to 100mcg today with boluses of 30mcg taken to 75mcg and he FINALLY got relief. He never even napped today. He has ferociously been coloring pictures, playing with the kids from his perch on the couch and NOT wanting me to get more than two feet away. This day has been a gift in that he was actually finally able to get enough relief to function. It is obvious that he is NOT done here on earth YET. Not yet. We are taking one day at a time here but if he wakes up and starts in coloring and is doing well we WILL go get PLT because he is obviously not ready to go. He is obviously in between the spiritual realm and here though. He has realized that he will go to Heaven at this point barring a complete miracle and he has told us all that he will check on us every day. I told him I will wave at him through the clouds from earth. This is incredibly difficult and the pain just comes in waves. Samuel told his Dad that "Daddies DO NOT cry." He tells me to find something to do if I cry. He continues to be so amazing. I swore I would take no more pictures but I did. This baby sat on the couch coloring pictures and posing and smiling for the camera today. He was able to show love and affection to all the kids, us, and his grandma and it did my heart good to see much more love and much less anger. He is still walking, pooping and peeing, but things are slowing down. He has vomited water, plain water, today. His edema is much worse. It is a matter of time without a miracle but if he is still needing to do a few things here before leaving, we will make the trip in for PLT to give him a few more days. If he goes to sleep and does not wake, that will be a different story then. Oh how I wish we could have time locked right now! Time in a bottle. The countdown is on, the clock is ticking and of course you just wonder how much longer he can hold on. This is the most amazing child and I continue to be so honored to be his mother even if it is way too short lived. Please keep praying. I cannot imagine how bad this would be without all the prayers coming our way. Please also say a special blessing for our Hospice RN's and social worker who have bee just extraordinary!
5/5/08 2nd update
They are bringing Dilaudid out tonight. Samuel is on so much Fentanyl that they think he will just go to sleep and never wake up once they get the dosing right. Please pray for us all...........this is SO hard. No more transfusions, he has only days if not less.
5/5/08
Last night was another horrible night. Samuel's fentanyl has been turned up significantly in the last day and has not even touched the pain. I have talked to the Hospice RN throughout the eve and early today and it looks like we might switch from Fentanyl to Dilaudid. I also am starting to suspect Samuel may have pancreatitis so we will have that checked today with labs as well. Bottom line, he is miserable and nothing is helping....again.
I have received many notes from people wanting to send something to Samuel. I do not have time to answer you directly as I am sure you understand. If you want to send Samuel something to do, you need to send it now. If you send something please know that by the time it arrives, he may be to drugged to even care anymore or worse. He spends most of the five minutes here and there he feels okay coloring and likes fuzzy posters, markers, anything to color that is dino or duck, wild animals and Pokemon. He likes sticker books, magnet books and activity books of this sort too. You may mail to the PO Box addy near the top of the page.
Please pray that we get Samuel's pain under control. I imagine we will know much more after seeing labs...which I dread. Does he feel so horrible because his WBC is now 500K? Because of pancreatitis? Because of toxic build up? The horrible possibilities are endless.
5/4/08
These are updates I really never thought I would write. Truly, we never thought Samuel would relapse. The biggest thing we figured we would have to deal with was his GI and poor anus closing down.
Samuel has no quality of life. Sure, there are little sweet moments here and there but they are short lived and drugged. He wakes up in pain, even though it is better managed, it is still there. He cannot sit up for long periods, maybe five minutes max. He cannot even get comfortable laying down for long periods. He is in diapers now 24/7 and I can tell you that those Samuel's Fitted's are still the ultimate in comfort even for a big kid. He asks for them and not the paper diapers. He is tired of living on the couch or in his bed. He wants to go to the school and ride his big wheel. He wants to go to Fred Meyer. He wants to get better and he still asks when that will be. His edema seems to be holding it's own and he is still peeing and pooping though the peeing seems to be slowing down a little now. He is still walking to the bathroom as best he can with my help. He cannot walk up the stairs though. He is angry a lot because he doesn't understand why this is happening to him. He remains miserable. Since he cannot do much to entertain himself right now, he is busily untangling the pain button from all the IV tubing so he can get to it easier. Kind of like a puzzle I guess.
It is surreal to watch three of the kids outside playing knowing one is dying inside the house. Samuel goes back and forth between wanting to stay here and wanting to go to Heaven. Mostly depends on pain. Today he said he wants to go to Heaven and I told him he could go anytime. He says, "Well, not yet." This brilliant child has already disassociated his spirit from his body by saying, "I feel sorry for my body. It feels so bad." Do you ever get a head cold and wish you could cut your head off because it is the only thing that hurts? Your body feels fine. Samuel's body hurts but his spirit is fine. He knows without being told that they are two separate things. It is an amazing reflection for a child to make. When he sees me crying, he says, "My body is sorry, Mama." His spirit must be already starting to separate from it on some level. He is asking Mark right now about how long after he, Samuel, is in Heaven, would it take for us to come too. Time works differently there of course so it probably would not be long at all. For us, however, it will surely seem an eternity.
Samuel sleeps as much as he can to escape the pain. He pushes his button a lot still and we again went up on his Fentanyl. His gut continues to chug right along with no need for Reglan. He is still hungry and wanting to eat so we are allowing this as best we can. His spleen is still in the way of his tummy so he cannot eat a lot without being full. I am feeding him small boluses of food here and there as well but seriously it is not enough to keep a bird alive. Food does continue to move through and seems faster today then even yesterday. It also did not seem to make him feel as bad as it has previously. I also saw his ph hit 8.0 briefly and then come down again. It is going down after eating however, which means the cancer is eating. That may be why his whole body hurts more after being fed. I need a bucket of powdered stomach acid because I am supplementing SO MUCH of it. I don't think he is making much if any at this point.
We will see labs tomorrow, not that they mean much at this point. We will be making decisions about further transfusions. Samuel's HCT was down to 25 Thursday, previously 30 on Monday so I imagine it will be quite low. PLT are another issue. His nose has already bled a little and he cannot seem to keep his fingers out of it. Pain management during a transfusion is difficult since Fentanyl cannot run with blood products. So they have to stop them several times to get pain meds. All the peaks and valleys in Samuel's pain level just make things worse. He hates being at the hospital now more than ever and begs to be taken home the entire time. On days when his dad is working, he begs for him to come home ALL DAY and that is horrible as well. He has no control of what is happening to him and is desperate for something to make this better. Nothing does. Still, he asks for new things to be brought home for him daily to try to take his mind off things. A new poster to color, a game to play, a video to watch, something, anything! It is really little solace in the end to him.
Nothing is making this better for us either. Watching him suffer, deteriorate, waste away is horrible. I have spent the last four years "fixing things" no one else could bother with. Unfortunately, I can do very little at this point. Samuel's feet are very fat from edema and making it hard for him to walk, yet he wants to anyway. Herbally, edema is the result of poisoned organs. That makes sense. Samuel's liver enzymes keep going up. His spleen is still as huge and hard as ever. Cancer and lactic acid are poisoning his blood. The herbal answer is to do a cleanse and of course, I cannot do that. Obviously getting rid of the cancer would be useful as well. I can do nothing for any of this without a gut functioning at 100%. While Samuel's gut is improving slightly each day, at this rate, it would easily be months to see a big difference assuming there is not irreparable damage.
Without a miracle, it is just a matter of time. How much seems to be up to Samuel. Our Hospice RN told me about many others who went through the process of letting go. Samuel hasn't completely let go. But he is talking about the prospect. He is tired of feeling terrible. We are tired of watching this go on. Oh, how my heart longs for him to just get up out of bed and come downstairs carrying all his IV crap to say that he is up and feeling better and doesn't need this crap anymore. Instead, he wakes up crying, miserable and has to push his button several times to catch up on pain control. I still cannot imagine him not being here. I miss him when he sleeps at odd times. I have always missed him when he has napped at odd times anyway. He is here and I miss him. It will be so much worse at the time when he is not here, just napping, but gone. I will miss him so much.
This sweet boy asked Mark yesterday if he is okay sleeping alone. I am sleeping in Samuel's room now and he wanted to make sure his Dad was okay. This world will truly lose someone special. Somebody's daughter will be cheated of a great man to wed. Somebody's children will be cheated of a best friend. Some employer will be cheated of a great employee. This is not quality life. These are not special moments. The special moments are when there is no pain lingering around the corner two seconds after joy. The drugs are like demons that fool you with a few seconds of joy and follow it with more and more pain. The short joy they bring is a lie shadowing the reality too cruel to mention. You cannot trust them to be reliable either since they work okay one day and the next you need more and more with even less of a good effect. We got some of those real joyous moments earlier this year. Of course the good days pass so fast and the bad days just drag on and on and on. I am just thankful we were smart enough to appreciate the ones we received.
Dear God, we want another miracle! We want Samuel's Restoration, completely and wholly. Our world has revolved around this boy ever since his birth. The family's fun has revolved around things he has loved. His love for ducks made everyone enjoy them. We went places to seek them out just so he could chase them around and talk to them. His love of dinosaurs has made all the kids junior dino experts. Many times no one wanted to play a certain game because it "wasn't any fun without Samuel." Samuel brought everyone together both before cancer and after. Thinking of the loss of our dear boy makes me think of that primal scream at the end of childbirth when you push the baby out. The one you never knew you could make and would never hear again unless you have another child. I hear that scream. It is so primal that you cannot even describe it. You just have to be there living it to know it. I don't want to live it. I don't want to hear it. I don't to feel it.
Daniel is doing a great job spending time with Samuel, telling him he loves him and making the most of these days. He and Samuel only got close after the relapse. Daniel is very openly sad. Kaysha seems to be in denial and has forgotten how to play with Samuel during his good moments. I have talked to her over and over about last words, doings and days but it just seems to not register. Perhaps we have had the "Samuel is dying" conversation too many times in the last year for her to think it is real. We have always found a way out of it before, right? Of course Anna is mostly oblivious. We are saying goodbye with each second, minute, hour, day. Apparently each in our own way. I am going to be happy for Samuel to fly free and actually have joy without the fear of pain right around the corner. I will rejoice for his healing. I only wish it could be here on earth with us. A fully healed and restored Samuel on earth. A tall order for man. Simple for God. Please keep praying for God to end this suffering, one way or the other. Thank you for your continued support.
5/3/08
Samuel had an okay day yesterday. He took several untormented naps and was also able to sit up and play, color and enjoy some TV. He also got hungry. Apparently starving, no big shock there. So I fed him some of the stock I just took off the stove the day before and that seemed to be well tolerated. While the social worker was here he was BEGGING for a quesadilla. Begging. So I made him one very small piece and told him to chew it really well so that if I had to take it back out of his tube, it would be easier. He was SO happy. Even the social worker noticed how her perked right up and enjoyed that tiny piece. About 30 minutes after it though, the headache returned and the muscular pain also came back. Of course he hadn't had either since stopping food. Obviously that proves it was all digestive. I ended up pulling that quesadilla right out of his tube. Later in the day he was famished again so he asked for yogurt. Pretty much the same result as the first thing, just easier to get out the tube. But it made him happy and while I explained the food = pleasure and food = pain, he did not care if it meant he could eat. He just pushed his pain button a lot more often after that.
Some interesting things to note. Samuel's bowel sounds get stronger by the day. There are even more today than yesterday. All the water and meds which go through the tube exit his tummy much faster than just two days ago. He is making very little stomach acid, if any at this point so all meds are mixed with vinegar for enhanced absorption. I am still replacing his minerals to attempt to keep his electrolytes in balance. He is also still getting massive amounts of probiotics. I have been wondering since seeing his gut come more alive by the day if there was severe damage from the blockage. Severe enough to cause all those ileuses and the cancer to blast off. An immune response to severe damage to the bowel, only his immune system was too compromised. I continue to suspect that Samuel's leukemia is essentially tied to his gut since every time it resurfaces, it is gut related. Certainly these are the worst gut problems we have seen and it is startling to read the Hospice notes on feeding a dying person and seeing that it really looks as if it is his gut that is dying because his brain and mouth are still hungry and easily able to enjoy food. The fact that daily we hear MORE bowel sounds and see better assimilation of even just plain water makes me wonder if it is still trying to heal in spite of everything else. At this point, of course, it may be too late but by the same token, his body has survived other horrific things while MD's were useless in diagnosis. Case in point, typhlitis. His colon was falling apart in his body and poop was spilling out for easily a week if not longer before they did something about it. All this with no WBC's. By the time they took it out, it was shredded and falling apart in their hands. That did not just happen overnight. Perhaps doing something about this a little sooner would have saved more of Samuel's gut. I won't discount his body's ability to cope with disaster since he not only had typhlitis but many other life threatening complications at the same time.
Samuel was up at 2am wide awake and quite alert and we had an hour conversation about different things. I have said this many times but he talks like an adult much of the time. I have been sleeping on the floor in his room since he does not want to sleep in our bed, but prefers his own room. So it reminds me a bit of being in the hospital in that I am right next to him and he wakes up at odd hours just to visit. He asked me last night how he can get all these demons out of his body. I told him the Bible says to resist the devil and he will flee. Tell them to leave. If anyone on earth is able to do this, I would lay money on Samuel. There certainly seem to be things he understands very well and other things he doesn't but the spirit knows and understands the Word of God even if a child's mind cannot. Last night he told me how much he loves me and was so adorable. As adorable as ever really. He played with his toys and did his usual joking around about stuff.
He also ran a fever overnight and went through several cups of water. The fever has been an off and on thing this entire time though. He peed better last night than he has in days. He still has not peed off the excess fluid in his legs or face but truly a person needs to be more mobile to get that off. He is still walking to the toilet throughout the day with help. His abdomen, while still distended, is smaller. He pooped and peed probably 10 diapers last night. The most in days. The poop looks okay sometimes and old other times. I saw yogurt poop around 10PM so that is a very long transit time considering he probably ate it around 2PM. I think even the small amount of calories helped him cope yesterday though.
I checked his ph yesterday and it was in the 5's. A stark contrast from the usual 8's. I have read that ph in end stage cancer is easily in the 5's and drops even further. Some of this, however, is digestion. I can check ph to determine if he is absorbing food. If it does not change after a meal, it is just sitting in the tummy. If it goes up, even a little, he is getting some. This morning is was actually closer to 7.0 so I will watch it more closely today to see how the trending goes and if that gut wants to wake up and heal itself even with the horrible counts. His body has certainly healed horrible wounds with very few WBC's in the past.
We are taking one day at a time and enjoying his alert and playful moments. We certainly have not given up on his will and desire to live. It is so clearly evident even in the worst of times. His mind has not a clue what his body is trying to do to him. Most likely, that is a good thing. We will continue to support his spirit's longings as long as he is with us here on earth. We continue to pray for our miracle knowing full well that God can change this at any time. Thank you for your continued prayers and support.
5/2/08
Thanks so much for all the notes, thoughts and most especially prayers. As I type this, Samuel's pain is finally managed and he is sleeping on the couch next to me. I slept with him last night and the night was uneventful. No screaming, climbing the walls in pain or long periods of misery. We slept. We haven't slept in days. His Fentanyl has been significantly increased in the last 24 hours and as his pain has come under control, his gut has had no trouble working. Here we thought it was the fentanyl which shut his gut down, but it was actually pain. We will see how the day goes with the pain plan as it is now but there is still room for him to go up on the dosing. At this point, he is mostly sleeping with short periods of being up. He is obviously whacked out on drugs now and will fall asleep mid sentence, then wake up a little later and finish the thought. His body just continues to be disfigured and there will be no more pictures taken or posted unless he gets his miracle. I don't want to remember anything about the way he looks now. His face is full of fluid and his legs are swelling. Not as bad as we have seen, but definitely larger. He is still peeing which is a blessing and walking to the toilet. He got IV fluids last night but we stopped them today because they just leak into the tissues. He is drinking an unlimited amount of water and it makes it through so we will watch the fluid level in his body today and see how he does. Samuel's gut is working in that he has good bowel sounds and water is moving through. We have stopped feeding him as of yesterday. At this point food is just making him more miserable. Stopping the feeds seems to have stopped the muscular pains and headaches. As soon as I give a med through the tube, these things flare up. Hospice left us a info sheet on food and water in the end stages of life which basically said that when the body is shutting down, it does not require much of either and feeding a person just adds to the discomfort. That seems to be the case. Samuel's mind is still telling him he wants food, but he is not hungry. Just thirsty. After four years of hand making his food being careful to give all the right things, it is strange to just stop feeding him. Either his gut has been dying for weeks or months or it is just part of the messed up blood that there is reduced blood flow to the gut making it unable to function no matter what we do. Nothing short of God will turn this around at this point. There are so many things wrong that any slight turn in the right direction will be most obvious.
Hospice has been a huge blessing and exactly what we needed. We ended up going to the clinic early yesterday because Samuel's nose started bleeding and again would not stop. He was absolutely miserable during the transfusion. Pain. It was horrible. We elected not to do the CT after seeing labs because nothing would change at this point. And it seems now that the headache has vanished with the removal of food. Our new Hospice RN called the house yesterday and left a message that she wanted to come meet us and make sure everything was okay. I called her from the hospital to say that everything was NOT okay. She asked me if I thought things would turn around. I told her that short of a miracle, no. Our hands are now tied to do anything but watch and wait. She called their Social Worker and they both rushed to the hospital to give us support. They don't know us too well yet though because as soon as the transfusion was done, we could not leave fast enough. So they missed us. The RN came out later that afternoon and spent several hours here watching Samuel and helping us make choices about meds and which things work for what in her experience. She was absolutely fantastic and is our primary RN so I am very happy about that. The Social worker wanted to come out yesterday but I told her to come today when it will just be me and the kids home. Both people seem fantastic and they really have the understanding engrained that coming into someone's house in a situation like this is a privilege to be honored. I will talk to the Social Worker today about final arrangements and things you do after a child dies. I don't look forward to it but it must be done. Both of these ladies have left my house reminding me that not only do they believe in God but they believe that He is still a miracle worker. They have witnessed them. Both shared things they have seen which were amazing. Both let me know they are still hoping and praying for the best but obviously we are planning for the worst.
I fully believe that God can change this at any time. But I also believe that God knows our hearts and that if Samuel is destined to a life of misery and suffering with very few rays of light, then he just needs to be in eternity. He never asked for this horrible life. He got shafted. No child should have had to suffer what he has. Samuel either needs a miraculous completely healing beyond a shadow of a doubt, or he needs to live with Jesus where we will know he is healed, playing, eating and being raised by the best surrogate mother ever, my grandma, Delma. He knows where he will go and he knows who will be waiting. I asked him to take care of my first horse, The Piglet, until I get there. My brother is also there as well as many other children whom will be his friends. He will be raised in Glory and never have to suffer again the torments of life on earth. He will be free. I will know where he is and he will know where I am. I will never have to worry about him again because he will be happy and free.
But God help me, I will miss him SO MUCH. It kills me to think that this perfect child who is SO special to me, such a huge part of me, will leave this earth. Truly, our spirits are intertwined and I do feel like a part of me will go to heaven with him. I have intuitively known his every need since he was born, when he was sick, all the time we have spent trying to heal his body, bring him joy, etc. We often did not need words to understand each other. I see myself in him often. I see Mark in him often. I will miss his joy and the joy he brought to us when he was doing well. He has been the most amazing child and I have spent days telling him how much I love him, how proud of him I am, and thanking him for being my son. Perhaps God laid a sense on my heart of how special he was from the day he was born so that we would enjoy and appreciate the time we have more. He will leave this world loved and he will know that we ALL stood by him as a family through it all. We have done everything earthly possible for him. Of that I have no doubt. We have done things for him that even the MD's with years of schooling could not do, would not do or my favorite, did not know how to do. He has only known love. Samuel's presence will forever be here in everything we do. Should he not get his earthly miracle, it will be the world's loss. My heart is breaking knowing that in a week, he could be gone. I know death. I have lived through grief now several times. The only thing worse than Delma dying will surely be Samuel as far as the emptiness left behind.
Samuel just wants to get better. I told the RN here yesterday that getting better to him means NOT hurting. He still thinks he will be okay again. His will has always been something to behold. His mind has not a clue what his body is trying to do. It is shutting down and yet he is still thinking of eating quesadillas for lunch today. I asked him if he was hungry and he said no. I really hoped that pain relief for him would mean he could still be awake and alert but for the most part, he is exhausted and sleeping. That is better than writhing in pain though. I am trying to prepare the kids as best I can but I just don't think it has set in yet. The days ahead will be difficult for us all. Mark and I have talked so much about the last four years the other kids have sacrificed for Samuel. We certainly intend to honor Samuel by making this up to the other kids. I think Anna will be the most lost when she realized her best friend is gone. She is so little and she doesn't understand. He has been sick her whole life. She just got used to it. He has taken so much of his illness out on her and yet the minute he feels better and "loves' her again, she does not hold it against him. They just played and played and played. It was so glorious to watch and have that sense of what "normal" was even for a short time.
Please continue to pray for God's Will to be done here. If that means Samuel receives his miracle, we will certainly take it. If that means an end to his earthly suffering, we will be so happy for Samuel to be free. We will rejoice for him to be finally healed and pain free. But, oh how much he will be missed. He is my heart and soul in so many ways. I cannot imagine life without him here. It will be hard without my little Pooper, my beautiful cutie, my most special little men. It feels surreal to be at this point.
5/1/08
Samuel is deteriorating quickly. His WBC is now 154k and he is again taking on fluids into the tissues. We were up all night and changes to meds are being made as we speak to ease his pain. Please pray for the suffering to end and and a quick peaceful transition to Heaven where he can be free from this torture for eternity.
4/30/08
Today has been another horrible day. Samuel and I shed many many tears over this awful day. Samuel maxed out his fentanyl several times. We could not figure out why he was in so much pain other than perhaps his tummy was working better causing digestive pain. He had great bowel sounds this morning and food was going through well. This afternoon he woke up from his nap screaming bloody murder and after several boluses with no good pain relieving effect, I noticed that his port had dislodged. Oh my Lord!!!!!! How long was it like this? All day most likely. I called Mark and told him to get home immediately and redo the line. Mark thought a lot of what he saw when he walked through the door was withdrawal. I think we saw a little of that on Sunday when he was getting blood and platelets and we used Nubain instead. By the second dose, some two hours after the pump was stopped, he was getting really uncomfortable.
We are officially on the hospice service today. Their goals line up with ours and I think some new faces are exactly what we need right now. They watched Samuel this morning and feel like we can get him a lot more comfortable then he was. We are not sure how much fentanyl he was getting this morning but I am sure he got none this afternoon. As a result, the pump was changed for higher dosing. I get the impression that hospice won't fool around when things need to be changed. I also get the impression that the support will be better and really liked the social worker a lot. Since our favorite social worker, Mary, departed the hospital last November, things there have certainly declined. The social worker we met today seemed to really understand what we want and need without needing a picture drawn for her.
We are going to the hospital tomorrow for labs, platelets and a head CT since Samuel's headaches continue. His nose has bled a little tonight so I will assume his PLT are getting pretty low. If we think he has leukemia in the CNS then we will treat to stop the symptoms as the headache is ridiculous. I think he would function a lot better if he did not have it. One of the pharmacists suggested that the headache may just be a result of all the pain still not under control and that may very well be too. All I know is that we have to do better than today. We know why today was so bad of course, but it is just one in a basket full of days where Samuel suffered. This would be so much easier whatever the end result, if he did not have to be miserable.
He pooped real poop today which was nice. After hearing how his tummy sounded this morning with a lot less fentanyl though, it is obvious that it is hindering his gut. Not as much as morphine, but there is a huge difference. I think I made it very clear with hospice today that his gut needs to work no matter what we do med wise. I hope someone will have some brilliant ideas here.
His spleen seems to keep growing much to our dismay. His tummy capacity is diminished and he is still not making acid so I am supplementing it big time. I think that is also why we saw better poop today because he had enough acid to get the job done. If we end up needing a sedation slot for a procedure, I think we will have an ND tube dropped just so we can bypass the belly. I wonder if that might also help with the headache and digestive dysfunction. I hate to take out the NG and made him drop another in the condition he is in now. That is just more torture at this point. The amount of food he can be fed is diminished at this point so he is not even taking in enough calories to sustain his weight. I imagine if the spleen reduced, he would again weigh 35 pounds. At this point, the only way we have of reducing the spleen is reducing the blast load and of course that is depending on his gut function which is diminished because of the spleen. His abdomen is very distended and he is miserable.
I just don't see how we can go on much longer like this because it is so heartbreaking. It is amazing how quickly the good days pass and how slow the bad ones go. I feel ill knowing that there is really not a whole lot we can do at this point for Samuel but watch how it all plays out. I cannot do anything radical with diet or supplements since he is hardly absorbing them, cannot get enough in and many of them are now bothering his tummy. I allowed him to eat a little REAL food for lunch just to see if he still even wants to eat. He does. But I ended up dragging most of it back out the tube. At least he thought he was eating and was happy for about ten minutes.
When he talks about going to Heaven, it always relates to being able to eat. I wonder how we will live without him and then I thought today that ever since he got cancer four years ago, we have never had a life. Everyone has suffered with him suffering the most. All this time, we have put one foot in front of the other in the hopes that he would fully recover and in four years time, I can count on one hand the number of months that he actually enjoyed. He has suffered more than any human should and for what? I don't get it. He doesn't understand why he is not getting better and he still asks when that will happen. We haven't lost hope that it could happen, because again, this IS Samuel we are talking about. But as I told the ladies who were here today, things on paper have never looked so bad. Things in his body have never looked so bad. So, we are hoping, praying believing for the miracle Samuel needs and deserves but we are also realistic in looking at the bigger picture. I have spent many many days and nights thinking it could be Samuel's last and yet he presses on but he is so weak and tired. There is nothing worse than what we are doing now. The suffering has to stop. Please pray for an end to this.
4/28/08
Today's Labs
WBC 82.5k
ANC 2475
Blasts 95%
HCT 30.6 transfused yesterday
PLT 66k transfused yesterday
LDH 1235
Uric Acid 11.2 - up! Cells are still dying.
Yesterday was another awful day. Samuel was not happy about being stuck in the hospital most of the day again. The blood did not seem to help the vicious headache either. It continues. Things today are better overall compared to the last several though.
We slept in two to three hour intervals last night and I woke up feeling much better being a bit less sleep deprived. I woke up with a new resolve to fight Satan with everything I have. What good is God or prayer if Satan always wins? What is to come of all Samuel's suffering anyway? What good? I don't see any. The only good that can come from this is another miracle from God. I have prayed and prayed for this to end and it seems that no matter what toxins are in Samuel's body, it continues to fight and stay with us so get all your spiritual armor and believers in line because it is time to pray through to our miracle. It is time for the suffering to stop I have thought so many times that I just want to pick Samuel up and carry him right out of this awful life to one where he is healthy and vital. As if just carrying him away would change things. I used to feel this way when we were stuck in the hospital in 2004 and there seemed no end to the vicious cycle. I just wanted to carry him out of that hospital and take him home, as if that would fix everything. I wish there were some place I could take him that would just right all of this.
Today is now over 72 hours past the last GI incident and he is better. We have a LONG way to go, but he is better. He is on less Fentanyl, and the bone pain and muscular aches seem to have vanished. There is still a dull all over body pain that Fentanyl seems to cover well but that headache lingers now no matter what we do. I talked to the Onc again Friday about if this was CNS disease and he doesn't think it is because other than the headache, there are no neuro signs. That leaves a few other options. Digestive, pressure from the spleen on a nerve, or stagnate blood and lactic acid. Any of these will be solved with diet at this point. Samuel's gut is working a little better each day though he is still unable to take in a lot in one sitting. He is starting to absorb better and it shows on paper as his albumen went up again today. I am hearing more happy sounds from him and less aches and screams in pain. he has been joking around a little today and even played with Anna a little. He even asked her if she was still his best friend. That says a lot! I was actually able to get a few things done today other than just sitting by his side. I hope and pray that each day that follows will show more digestive progress and that as food is assimilated better, he will feel more and more like himself. I also hope it stops that headache that no one seems to have a drug for. And of course, KILL ALL THOSE CANCER DEMONS!!!!!!!
Hospice finally called today and will meet with me on Wednesday. I asked them about future scenarios in which we hope Samuel will recover and they said they are fine doing pain control as needed and supporting our hope for recovery. They said they have had patients on and off their service for several years. No one wants to see their child die and I don't want to enlist more people who are just waiting for the inevitable. I hope that these people who are coming will bring help and hope. And with Samuel, things could be much different even on Wednesday. RN Kelly told me to stay grounded. I laughed and said, "Hey, this is Samuel we are talking about." I learn about life from this boy every day and he is certainly not grounded. As soon as he even remotely starts feeling better, he is all about having fun.
While we were getting blood yesterday I was reading some herbal things on stagnate blood and found some herbs to help stimulate blood flow and remove toxins. I have been treating Samuel's lymph node problem with herbs already I cannot tell if they are smaller yet though. I hope they drain and the spleen drains soon. The stagnate blood treatments should also help drain the spleen. Interesting, some of the symptoms of stagnate blood are headaches, muscle pain, lower back pain and spasms. Sounds real familiar. Or "everything hurts." This is a scary thing to hear when I know of another girl who said this very thing to her parents and not too long after died. Obviously Samuel's blood is toxic. It is also stagnate. The blasts become sludge. We have to try to treat this as best we can and hopefully reverse it. Funny, somehow today he has neutrophils. Not sure why but we will take them!
Mark has said all along, "We can only do what we can do." I have spent the past four years managing problems, complications and pain that no one else wanted to deal with when it got too hard. I don't know how to stop doing that. I cannot stop as long as Samuel's body lives. I have to stop his suffering. We can only do what we can do. I pray to God for more more more supernatural favor and wisdom to do the impossible. Like Samuel, I don't give up easily. We will continue to pray and believe for a complete restoration. Baby steps!
Samuel knows he is six years old now. We still have yet to have a party. He has started to talk about a party now. He wants Kaysha to make his cake and decorate it. Maybe this coming weekend? We really hope he will feel like it then. He wants to wait until he is feeling better but today makes things seem very hopeful.
it looks like Samuel will need platelets on Friday. We will see labs again on Thursday. Cells are obviously dying again and for that we praise God. We praise Him for renewed hope today and for Samuel starting to feel better after weeks of agony.
Thank you to everyone for their continued prayers, spreading the word for Samuel and faith filled notes left for us to read. They are well received and bring life to a situation that reeks of death. I continue to pray Psalm 91 over Samuel. While ten thousand fall on one side of us and a thousand on the other side of us, death will not come near us because our God hears us and answers our prayers.
4/26/08
Things continue to be very difficult here. I continue to be amazed at the things we are forced to live through. We are helpless to do anything more than just ride this out and this last week has easily been one of the most horrible we have endured in the last four years bar none. With few exceptions, people we deal with continue to be a disappointment and I get the impression that some just wish Samuel would die already just to be rid of us. Samuel now needs blood and platelets and I had to make it very clear to my Onc that it needed to be this weekend vs. the week since every day Mark takes off costs us money we cannot get back. I swear these people forget that we have other kids, a house payment, etc. to take care of and every cent counts. I also get the impression that getting blood and platelets is now a BIG deal since Samuel is DNR now. Like they are wasting them on him or something. We are receiving such poor support from some people involved. I guess we are used to being dropped when things get too difficult anyway so this is no big surprise. I have asked for Hospice to contact me now on several occasions and still this has not happened. Samuel remains on the Fentanyl drip and maxed out his boluses last night so this needs to be attended to. The Fentanyl does not touch the headache he has constantly and barely helps with the rest so we are having to layer other meds to just take the edge off.
We did see another GI breakthrough two days ago however. A good puke always rights things and he ended up puking and apparently moved his gut enough to allow him to poop out yet another huge chunk. So there was still something else lodged in him. After that, he had several more cleansing poops until it changed over to clear water. He lost all his body heat over it and ended up drinking four eight oz. glasses of water in ten minutes to replace the fluids. We have never seen anything like this. And amazingly, after this happened, he felt so much better and even got hungry. He ate a banana and later that night, he actually made real banana poop. We have not seen sand or gravel poop since then. Unfortunately, what we have figured out since stopping the steroids was that all that weight Samuel gained on them disappeared since they have stopped. So they fooled us into thinking he was getting nourished when he wasn't. I called my GI and told her about Thursday's occurrence and she thought based on the big event that he was finally cleaned out. Then we addressed the starvation. Samuel is starving. I asked her about how long it takes to reverse a bad case of starvation when the gut does not even want to function. She thought that many of the symptoms such as headache, muscle aches etc. would be relieved in 72 hours. We are about 36 hours past right now and we are still waiting for relief. We changed Samuel's food to elemental formula mixed partially with our usual diet and have him on a very slow drip because the next thing we have to watch for is pancreatitis. Samuel hasn't made enzymes for months now which is why I have had to replace them in his diet so heavily. Once this organ wakes up after not working for so long, there could just be more complications. Seeing how much he improved just getting everything out of his body was amazing and then as we added food back al the pains also returned so we know that a lot of this pain is still digestive. This is SO frustrating. Without a gut that works, he will die. With a gut, we might have a chance though labs look horrible. WBC is now 70k and 95% blasts, LDH over 1k again. If he absorbed food right now, that would help relieve all the toxic blood but starving won't do anything but help things along. Today I have seen poop that looks covered in green bile which historically meant that things were going to change over to good poop soon after so I am hopeful that we will see this in the next 24 hours. Our GI also thought we could bypass Samuel's big spleen by putting in an ND tube to make sure food is making it through and not sitting stagnate in the tummy. We would have to change the tube again and none of us want to do that right now. So we will wait and see.
All of Samuel's lymph nodes are swollen around his face and neck just adding to his discomfort. We are still trying to treat the aches and pains associated with everything going on but I am not sure how well things will work with no useful WBC to heal things. Samuel said he is ready to go live with Jesus is he does not get better soon. He is excited to eat whatever he wants when he gets there. He just wants to eat. We think part of the headache is hunger, glucose disturbances and poor assimilation of nutrients. He is getting some things in, just not a good balance. At any rate, if all of this is a process, then in his mind, he is making peace with leaving us and living with Jesus. At least when he gets there, he will be well prepared for eternity.
Samuel is in need of a miracle right now. If we were able to turn this around again, it would be nothing short of a miracle from God. This is the worst things have ever been. I feel like a woman in labor at transition. The pain is so bad you either want to die, or get that baby out. I know Samuel feels the same way. He is so tired of feeling awful day in day out. Please continue to pray for relief for us all. Whether that means a miracle or peaceful transition to heaven where he will never hurt, suffer or shed another tear. There is nothing to stay in this life for when you live this way.
4/23/08
If I do not update everyday it is because I am taking care of Samuel and trying not to neglect the other kids. Weekdays I am home alone managing all this so it is stressful and tiring to say the least Unfortunately, we cannot afford for Mark to stay home.
Samuel remains critical and we are doing everything we can to keep him comfortable, pain free, and yet still give him a chance to fight his cancer. It is not an easy task and I have spent the past 48 hours utterly disgusted by people we deal with on a daily basis who are trying to "help" but are only making things worse by diverting my attention away from Samuel and on to them. I talked to six people between yesterday and the day before and only one was able to help put this whole thing together in a way that we can all live with. Thanks, Marissa. She is the only one who understands that Samuel needs not JUST good pain control, but he needs to be able to function, move, play and not be tied down to pumps and sedated out of his mind. We need to find the balance of easing his pain yet allowing him to fight. She made a very frustrating start to the week easier and I just don't get why I have to go through so many people to find one who can be understanding, helpful and respectful of OUR needs and SAMUEL'S needs and not make this about themselves and what they think we should do. I have been taking care of Samuel for six years now, four of which he has been very sick and would have died if I allowed others to do what THEY thought we should do. She spent a couple hours with us today at clinic while we were getting platelets watching Samuel feel better and then deteriorate and helped us understand the whys and how's of getting this managed so that he will be able to cope and start to function again. No one else has been able to do that apparently. Samuel's care is difficult in that there are so many complexities to work through and not enough stress has been placed on the gut function, massive amounts of drugs being used, the fact that his spleen is still huge so he cannot be fed as much, the list goes on. Any drug which stops his gut is just going to add to the pain, not take away from it. It is a vicious cycle of complexities. He keeps asking when he is going to feel better and we do not have an answer to that.
Last night we were able to get his pain managed well enough that he was actually able to get up and play for two hours before retreating to the couch in pain. Two hours is not enough but it is an indication that the pain CAN be managed and he CAN have some enjoyment yet. Being able to get up and function means he will keep his gut moving enough to hopefully offset the large doses of Fentanyl. He is on high enough doses now that we are going to try to move to a patch later this week so he can get off the drip. That should make him more mobile when pain is covered and we can start to do things again like go to the park even if he just rides in the stroller. Sunlight is good medicine. Anything is better than the couch. The couch is death. We have been here before. It is not a fun place to be. We are also going to do a hospice consult to see if they are better suited for us at this point since so many pain meds are now involved and this is not our home health's forte. Tacoma does not have a pain team and this is definitely a draw back with this hospital. We are hoping hospice might be better in this regard.
I spoke with the support person for the cesium protocol today who gave me some other ideas of dealing with the specific pains...body pains, not people pains, we are seeing. One of the hardest to manage is bone pain, which just started yesterday and is escalating. it is in the hips again which is where is was last winter as the blasts were dying. Only now it is about 50 times worse. Strontium has previously helped with bone pain but I think the bone pain with chemo is adding a whole new dimension and it is hardly covering it We are reaching the nadir point for the chemo and it seems to have found the marrow and is causing pain Samuel's chem panel shows more tumor lysis though not a significant change in the overall count or blasts or LDH for that matter. Our Onc agreed with me that sometimes the labs are behind in what is really going on in the body. Samuel's CO2 was down to 13 which is a far cry from 21 or above and this is probably some of the problem in how bad he feels. It was still 23 Monday so it has dropped significantly I could not wait to get home and give baking soda as this is the only way to get this back up fast. It usually helps him feel better quickly but will probably take a few doses. Low CO2 is part of tumor lysing as it is used up in the process. We hope to see a better decline in the counts Friday. i am now using cesium and dmso topically in very tiny amounts since we have little gut function. I am hoping the dmso will help soften the spleen more but not stimulate tons of blasts. The spleen does seem better and even more off Samuel's lungs. He was so quiet while sleeping last night and on the way to the clinic today. His poop still leaves a lot to be desired but he is getting some benefit in his feeds though they are certainly not enough to sustain him if his spleen does not get out of the way. Samuel's HCT is holding at 29 which is amazing! Our Onc thought that many of the blasts in the marrow are probably in the bloodstream because the PLT and reds don't seem to be affected much more than they usually would in this situation.
The next few days will certainly be very telling in what the blasts do A WBC of 50k is not insurmountable in itself. But all the additional complications do not help at all. That is all we have ever done though, manage many tough complications together. Marissa sat with us today and we talked about 2004 and all Samuel went through. All he overcame at that point. His will to survive. Our fear that if he cannot again get the blasts down, that will to survive will keep him in this life suffering longer than we want. We want our miracle. We want a complete reversal to all that has been done. But if in the end, that is not meant to be, we want a peaceful transition. The most scary part for us is that Samuel has already survived many of the ways he could die from cancer. We have lived through many scenarios that could have, should have taken his life. Yet, he overcame them. I don't feel the need to relive them. As I told Marissa today, trying to ease his transition to Heaven will be probably more medically difficult than getting his cancer under control since all the drugs have horrible adverse affects on a gut which now cannot heal itself because our good WBC is now gone. Samuel's poor butt is again broke down horribly with not much help in WBC's to repair. This is a horrible nightmare that just keeps going and going and going. It is unfair for him to suffer so much and have to stand by and watch helpless to do much more than we do already. It is literally up to him and God again. I believe in both of them, that is certain.
Specific prayers in no certain order are needed for pain control, healing of the breakdown on his butt, a clear direction from God on what to do from here, shrinking of the spleen which would help A LOT, cancer to die off, people who listen, understand and actually help rather than just throw drugs at us. I need to be surrounded with people who can believe in Samuel's desire to get better, and his will to overcome no matter what the obstacles. I want people who still want to "fix this" around me. Not people who just want to drug him into oblivion or want to talk in the "other room" because they don't think he should know what is happening to him. The most important thing for Samuel is to enlist HIS spirit and mind in this battle. This is a spiritual battle to be certain. When he was two years old, there was no way to enlist his spirit because he was a baby. It was the spirit of God in him which kept him alive then. Now, he fully understands he is sick and he fully understands that he will either get better or he will die. He has been told many times about heaven and what his life will be like there and also told that if he wants to be free, we want him to be free as well. Yet he wants a chance to do what he does best, prove all these people wrong. He wants to live. His will is something to behold and we should all take a lesson Where there is a will there is a way. I have always functioned better when the odds were stacked against me and I see that same quality in Samuel. We will continue to support him nutritionally to give his body fuel for the fight and try to get him more quality of life than just being tied to IV's stuck on the couch. After last night, I know that is possible. As it is now, the depression of his situation is enough to steal the fire from his will to overcome and I don't want to see that happen. I want him to have every opportunity to follow the will of his spirit. He deserves the best chance we can provide. He has his own spirit and soul and desires and just because I am the parent does not mean I should make the final choices for him. As long as his organs are strong, I believe his desire will be the same. Right now on paper, his organs remain strong in spite of the poisoning and lysing in his body. If we just had a miraculous gut healing.......please God give us that! Praise God, he is STILL a miracle.
Very special thanks to RN Chris in Infusion today for standing with us and being always an encouragement. That helps so much.
