Update 9/22/04
Two months ago we brought Samuel home from the hospital for the first time in 11.5 weeks. I told Mark this tonight and he responded that it seems like we haven't been home two months at all but rather less time as we had to go in so often for awhile there. It is so nice to be home. I guess reality has crept up on me as it always does because now I am having dreams of the hospital and certain awful days we spent there are sneaking into my daily thoughts. Somehow it seems like it has been a long time since we were stuck there, but it is still scary to think of. Toward the end while at MB I just hated to see Mark go because I swear that the nights there were doomed. Everything bad always happened at night. And people will always tell you that the day is good and the night was bad but I think that is because a "normal" person expects to SLEEP at night and when you are there, you don't. When I think of waiting for Samuel to get his 10pm dose of morphine and seeing him finally get enough pain relief to go to bed, it makes me so thankful to be home. I used to wait for him to get to sleep while in the ICU and then between 10:30--11pm take Anna and walk down to Emergency to have security drive us to the Parent Apartments for the night. This always woke Anna up and then I would spend another hour getting her back to sleep. Then I would wake up several times in the night and worry, look at the clock, etc. Finally about 6ish, I would get up, dress and wake Anna, head over for another long day. For months, nothing ever seemed to change. I would go to bed and pray that he would be better, look different the next day, and he never did. So while it may not seem like we have been home for the majority of two months, things certainly have changed for the better. I just wish I could wipe my memory clean of these thoughts that seem to enter in when least expected.
Samuel is traveling all over the house! He leap frogs instead of crawls though. And he does it with sound effects so you hear "ribbit ribbit" as he goes about. I think his knees will get sore if he continues. The pictures of him sleeping aove show some red knees already. He got up today and asked to "go walking" and he walked all the way out to the Big Room. He walked really well and felt good today. It rained here today so we did not get to swing but he did go outside yesterday. He got to go to Fred Meyer again today. The newspaper article about Samuel has ran in three papers so people are starting to recognize us. Seems strange to have someone come up and say "hey, I just read about you guys..." Samuel is NOT imporessed. But he is find if you want to come up and love on Anna. Then he is happy, but don't look at him, especially if you even remotely look like a nurse. We are planning to attend the auction for a short amount of time as a family and will most likely arrive between 4:30 and 5pm for those who have expressed interest in meeting us. We will not stay long because Samuel will be uncomfortable with the attention and we do not want him around people who may potentially be sick. By the same token, we feel it is important to say thanks and mingle with those who want to help us help our boy. We thank you all for that!
I think we have lived the last week in Laa Laa land. Savoring every moment. Samuel gives me hugs and kisses nonstop. He is so happy right now. I have hardly spoken to anyone other than the family who lives in this house. We have taken some time to just be us, sleep in, stay up late, I sewed a little. Got the longest order in history out. There will be some benefit e-bay auctions soon with the leftovers. There are still a few names on the list who were content to wait "forever" for orders and I am going to try to get them done in the next few weeks before we are facing the REAL DEAL. Consolidation treatment for Samuel. Just want to tie up loose ends.
Tomorrow is Samuel's first spinal tap chemo since April. I feel at peace so far about tomorrow, remarkably. Maybe when I wake up, it will be different, but I hope not. He has gotten the chemo before as a spinal tap but the thought lingers as to whether this was what contributed to the hydrocephalus, etc. I am honestly rolling it to God to worry about. He stirred me up in spirit enough to look for answers and I got them. Not the ones we were thinking we would get for sure, but answers nonetheless. I don't know what tomorrow will bring but like a certain phone message Kristina left me, I "trust" that all will be well. And we haven't seen his labs in two weeks and I really want to see them. He is doing awesome, but is really more tired, probably from overdoing it. But I also wonder if the chemo is actually doing it's job suddenly. So tomorrow we will go in for labs at 10:45am and then do the tap, chemo crap. And I swear if ONE MORE PERSON calls and tells me it is a "back poke" I am going to lose it and say terrible things. I digress. Anyway, then I guess we get to hang around a few hours to be sure he is okay and then Neuro Surgery is coming in to tap the shunt and check the level. If it is okay, they we go home and TRUST God for the best. If it is too much, they will turn the pressure down and dump it all out. They are hoping to learn something they have never known before as well. Please keep us in your prayers tomorrow and especially Samuel, that he will have no problems either now or ten years from now from this drug. Pray for Mark and I as we surrender our child to this poison which is supposed to cure him. Pray for our caregivers to have put some good thought into our meeting last week and haev some info for us that will inspire hope rather than hopelessness. Pray for peace to continue so that if I feel a sense of terror, I shall know to follow it in the future rather than stamp it out and go with the flow.
Special thanks to Pam C. for Anna's winter best! This is the one of the nicest thing she owns to date. Much love to you always....I think of you often.
Thanks to Julie O in TN. Anna is in heaven with her package today. She and I thank you. She wore one of the jammies today already. We love these and your children are so adorable. The girls look so much like you. Thank you for being my friend. Much love to you!
Thanks to Laurie W., correction from my last post, for the Quack Quack Tee. Samuel wore that for two days in a row and when I fianlly took it off, it was good for a huge fit. Thank you for your note, your prayers, much love to you.
I want to share with you all one of the nicest notes I got today......from a true friend I have never met IRL....
I feel far away from you in spirit, as well as distance tonight. I hope you are remaining sane considering what tomorrow brings. My heart is heavy as I think about how we haven't talked. Now that the time has come for him to have this done, well... I am thinking of you and praying for you and trying to connect with you - across all these miles - someone I have never met -
I guess since all we have ever had in this relationship is phone and computer, it hits me especially hard when I realize time has gone by and we haven't connected. I worry... "Does she know how I feel?" "Can she feel my concern?" "Does she think I don't care because I haven't talked to her?" "Does she feel like I've forgotten her and what she is going through?"
I haven't forgotten about you.
I miss you.
I'm sorry that I have been busy and I hope you are o.k.
Love,
Kristina Louise
I can say with honesty that I don't know how I would have made it through all this without my beloved friend. And we will meet one day if not here, then in heaven. I really hope we don't have to wait that long though, I am not the most paitient person you have ever met. All my love to you, my friend.
It is amazing how we connect with each other over the internet. Certainly we could not be home without your support, you who don't know us, will probably never ever meet us IRL. Thank you. Thank you from the botom of our hearts. I heard someone say the other day that they would only help someone "they knew". That made me feel sad for them because they will probably never make a difference in someone's life they way so many of you have in ours.
I received another note a few weeks back from a lovely lady who continues to write me regularly despite my staggered replies who said....
There have been times when you have written about being amazed that so many strangers care about your son and all of you, and express your gratitude for the notes and gifts you've received. Please understand that by allowing us to participate in a small way in your struggle, you are giving people a chance to be part of something greater than their immediate lives. We all want to feel connected to each other in this big and often indifferent world. By your writing about your family (and my can you write - no flat prose from your keyboard - your descriptions sing!) you are providing a link among many who otherwise would never touch each other. So thank you, Jen, and God bless all of you.
Suddenly, the wholeness and meaning of this paragraph has sunk in. Much love to you all tonight who read, and follow our journey. I feel especially sentimental tonight as we are standing on the threshhold of a new chapter in Samuel's saya. The beginning of treatment, though small, is integral. We need all the prayers you can muster as we move forward. You who have faithfully followed Samuel's story and prayed fur us while we were in the hospital with him surely saved his life. Everyone who helps in a little way, just by sending a note of encouragement, or a prayer, helps get us through another day in this miserable mess we call reality now. I know I am here to do something, help someone. So, I hope that by reading, helping, writing and praying for us, you feel close to us and our gratitude to you. I hope that when I thank you, it doesn't feel like empty meaningless words said because it is expected. Without you, Samuel would not be with us. The newspaper article annoyed me a bit because when the reporter asked how we have been able to sustain this long, the first thing we mentioned was our internet friends, many of which we don't know. That part was omitted from the article entirely. What a shame to not tell the community that over the last five months when only a handfull of local people knew about our plight, you wonderful people have held us up. For that, we will always be thankful.
Update 9/20/04
Today is the 5 month anniversary of Samuel's diagnosis. I remember 4/20 like yesterday. That was the day life, which I considered good at the time, changed forever. Throughout the summer while we were in the hospital, there were times I wondered if we would ever play outside again. We went out in the back yard today for the first time since 4/20. Samuel and I have been shut in for a long time it seems. He got to swing in his dolphin for the first time in months and he enjoyed it so much. He was very mad when he had to go in but he almost fell asleep in the swing. I remembered our goal of landscaping the yard this year...so much for that. Planting a garden. In a lot of ways it seems like just yesterday this happened especially when you go into your backyard and lose track of time. The last time I was out there it was spring, now fall is upon us. So we will enjoy these last nice days. Samuel is a joy and it gives me so much joy and heals my soul to see him happy, laughing and having fun. Carrie was here the other day to visit and was pleased to see him doing so well. Especially after the last time she was here and he was doing SO BADLY. She commented on how happy he seems again and what a loving and happy boy he was before this all happened. I told her that Samuel is the kind of child you have 3 or 4 kids to get. Toni told me that her third child was the peacemaker of the family. Samuel is that and more. He unites us, he makes everyone happy simply because he is happy. He IS the child I have had 4 children to get. I don't know what the future holds for us anymore. When the roller coaster ride was going on over summer, I kept thinking that the worst could not happen. I believe that Samuel is healed of his Leukemia....but at the same time, I will not waste any precious moment with him. I know what it is like to have loved ones die and feel regret......
I am trying to resolve myself to what the future holds for us. At least in the short term. My urgency for finding treatment options for Samuel has died off and I suppose I am at peace with staying here and going the conventional route though I am still not happy with that option. I guess I don't feel as hostile so that is an improvement. Of course it is not Thursday either..... This is what God has planned for us it seems so I will allow Him to do His work, and be true to His word and protect us from her on out.
We are trying to enjoy life today, plan a little for down the road. It seems that if Samuel starts intense treatment next months, t will be a very quiet holiday season because when his counts are low, we will be sheltered to ourselves. We will be so very careful at this point knowing what has happened in the past when a pnemonia turned into a 4 month mess. I guess that works out well since the weather usually sucks during this time of year anyway. Kaysha and Daniel won't be begging to play with friends outside all the time. We will hopefully get lots of schooling done.
We enjoyed life today. Samuel got to go shopping, out to lunch and played outside. He felt a little yucky the last day or so, why I don't know. He was walking pretty well with help the last few days but now is either sore or too tired to stand up straight so he slumps. Hopefully this is just because he is starting to do A LOT. Not content to just sit around anymore. He has been playing with Anna a lot as well as Kaysha and Daniel. He likes to play catch with any number of balls that are around here. He picked himself out a pumpkin ball today. He is fascinated with pumpkins. They don't take the place of his ducks, mind you, but they will do in a pinch.
Speaking of Quack Quacks, thatnks to Starbunz for the tee. I recall seeing it in your auction awhile back and it is adorable. Samuel cannot read yet so we all told him what it said several times and he now loves it. Thank you, this is such a special gift.
Thanks also to Shandelle who continues to spoil us. Much love to you.
Thanks also to Shelby, your package arrived and the products look fantastic! Thanks also for your continued notes of support. Much love to you.
Enjoy life today so you won't live with regret tomorrow. Much love and thanks for your continued prayers.
Update 9/18/04
We got the answer from God that we prayed for and it was not at all what we expected. I have referred to Samuel's ordeal as a bad soap opera that no one would write. Well, they day always comes, even in a bad soap opera where the shell-shocker is revealed and then it takes a few weeks for everyone to get back on track. We are there now.
As I stated in my last update, I asked for a conference with our Onc and the Leukemia Specialist whom we had not yet met as well as with the social worder. We cancelled the spinal tap for this day. I printed out some of the other opinions I had received in regard to Samuel's case and took them each a copy as well as wrote up our questions/concerns on a top sheet that they each got. I hope they will be continuing to mull that over this weekend. I also printed out a pic of Samuel taken a few days before we left MB for Seattle so they could all remember what we came there like. After the last few days leading up to the meeting, I really just wanted to go in, take their planned protocol and say "see this?" and then throw it in the trash. Kristina told me that was probably not going to be effective, LOL. But I was mad and afriad for Samuel's life. I spoke with Kristina the morning before we went and went over it all with her and I think she was pleased that I was in a better place mentally on the day of the meeting. We prayed that the meeting would go well.
We took Kaysha and Daniel to Mark's parents but took Samuel and Anna with. I was praying that those two would be quiet for once and they were! We arrived on time and were taken back to one of the exam rooms. Samuel got upset right off the bat until we put in Teletubbies. He and Anna watched that pretty much the whole time. Our Onc came in, his usually happy self. He is very pleasant natured. I don't think I have ever seen any other attitude form him but that. The Leukemia Specialist came in and introduced herself then the Social Worker whom we already knew. We prefaced the meeting by letting them all know how pleased we were with Samuel's latest progress and they were very happy fur us. Our Onc said that he was not sure why the meeting was called and would let us lead it, so I did. I got out the picture of Samuel and showed them all. I really believe that this was effective because the doc who did not know Samuel got a very clear picture of what we came there like. Our Onc and the SW were taken aback a bit because I don't think they realized he looked that bad either. I thanked our Onc for his efforts in getting Samuel care and getting us home, continuing to deal with us even though we were "complicated". I told him that after my last "chat" with him, I decided we needed to get more opinions regarding Samuel's care. I told him I asked several top places if they had similar cases, had any suggestions or could direct me to the BEST place to care for Samuel. I let him know everyone unanomously directed us back to where were were now citing that we are "uncharted seas." While all these Oncs agreed on the set protocol, they also stated that the horrible problems Samuel suffered could not be ignored and that some changes may need to be made. I received the following from a Onc who looked at Samuel's case and found it very refreshing and helpful....
The 1961 protocol may be one of the best but that does not mean that this child will be able to tolerate it. The art of oncology means taking what the individual patient's body will allow you to get away with.
There are many individuals who are very capable of delivering the needed care.
. Ultimately the parents have to have a moderate amount of confidence in their child's physician and the physician has to recognize when help may be needed. I rarely recommend that families move from their support systems unless there is a treatment that is available only in one place.
There are too many variables to speculate on a prognosis. I would concentrate on giving this child the best care that he could tolerate
Every patient is "unique." Some (like Sam) are more complicated than others. Complicated does not correlate with prognosis.
I included this in part of the papers I gave each person. They took a few minutes to skim what we brought in. We went over the spinal tap issue and came to the agreement that their drug of choice was still the best option. Further, they plan to tap the shunt a few hours after the injection to check the level. If it is too much they can turn the shunt pressure down and "dump" it all out. So maybe this is safer and everyone seemed excited to be able to get more info on what the drugs actually do while in there. So in that respect, Samuel will be furthering knowlegde. Just pray it is not at his expense as the drug is proven to cause neuro issues in children under 5. That is now scheduled for next Thursday.
So with that out of the way, we went on to discuss protocol. Our Onc said nothing is set in stone. They want to do the taps seperately so they can see if Samuel has a reaction. When he starts Consolidation, he will get several drugs in conjunction and this will be an effective wat to rule out some of the drugs as he is already tolerating them well. We were told that his daily doses of chemo are pretty big doses, which I did not know, and he is tolerating them fine. So that is good news and I liked the fact that they want to test some of them seperately. That seems safer. I asked both Oncs if we just got unlucky, if Samuel's lack of a WBC and ANC just kicked us in the butt for several months and they all agreed that the things that happened to him were just horendous. But our Onc reminded us that if his Leukemia comes back, then it will be even more devastating and our options for treating it then will be limited. He said the most awful thing that has happened to Samuel was that he got Leukemia at all. So in discussing protocol, we reminded them then that three weeks on their planned protocol took almost five months to work out all the problems. It was at that point that the Leukemia Specialist told us that Samuel actually got more drugs than what is on the protocol. ANd he got a few certain drugs in place of others. And he also got more of a drug in two injections than is written for on one month of their protocol. It took some time for what that meant to hit home and we are still taking it in.
What it means for Samuel is that when he gets back on to the protocol, assuming it is actually followed, not augmented, he will probably do okay. We don't know why the protocol was deviated and substitutions were made or if there was a "good" reason for doing so. It was never explained to us. And in fact, I got one standard roadmap and then a hadwritten one later which is the one that was followed. So the protocol was rewritten for Samuel it seems. The deviations made on Samuel's induction protocol have been proven in the past to have severe durg interactions which have caused sepsis, which Samuel had. The mortality rate for sepsis is 30-50%. In the case studies that proved the problem areas in this protocol, 44% of the kids had a sepsis. 4% died. These odds were significant enough for the writers to change the protocl to ensure that these things did not happen. Samuel's sepsis turned into typhlitis wich has a mortality rate of 50-100%. This resulted in the loss of his colon. We are not sure what caused his hydrocephalus but as I always say, you cannot poison a child and expect nothing to go wrong. Further, it seems Samuel was doomed from the start. This is the missing piece of the puzzle and mystery as to why he had so many problems. Seems that it could have been avoided or at least that the long term damage could have been lessened. We have our original protocol and can see where the changes were made. We do not know why the changes were made and how ethical it was but will be investigating. To say that I am pissed off does not even cover it. Just another reason to be educated and not take a doctors word for ANYTHING. The problem we had was that Samuel's blood word was critical when we arrived at the hospital and we had no choice but to treat. I have referred to this treatment as treat, treat, treat=kill, kill, kill. I guess I haven't been too far off the mark then. So this is the bad news. Sadly, Samuel has become a statistic...again. But the miracle of Samuel still being alive after all this is becoming clearer every day. We want to thank everyone who prayed so dilligently for us over the spring and summer months. Your prayers surely saved Samuel. I have thought long and hard as to whether to post this, but this is now the reality. I don't know if the Onc's at Seattle just realized this or if they just found out when we did. The reality is, it happened, Samuel suffered horribly for it. Doctors are not Gods and they are ALL accountable for their decisions, An integral part of what one of the docs who responded to Samuel's case told us is that we need to have a moderate amound of confidence in our Onc. How are we ever supposed to have this again? Enough said, I could go on forever about this.
On the flip side of this, knowing that info and seeing the stats, I feel a lot better moving forward with treatment so we will stay in Seattle. Our Onc wants to proceed carefully, even mentioned how bad he feels to see Samuel doing so well, and then have to put him back into intensive treatment. But it would be worse to relapse. So our plan is to do the spinal taps for the next four weeks and then decide how to proceed based on Samuel's well being. I started to tell the Onc that if we get 10 days into Consolidation and I have to be there for 3 months again, and he finished that I would never talk to him again. We laughed. Mark says, oh, no, she will talk to you!!!!!!! I told them in no uncertain terms that I am scared to death to begin, they need to proceed with the utmost care. No one will comment on his prognosis still so I leave that up to God to handle. I believe Samuel is healed of Leukemia but will follow the treatment plan unless it is proven beyond a doubt that he has none and we can stop. I pray and ask you to pray that our Onc will be led by God when choosing how to treat Samuel. I pray for no further horrendous complications. Our Onc reminds us that "there WILL be complications". But upon dosing his meds at one point while we were at Childrens's I questioned him about them being safe and he stated that if these were not well tolerated, then he was not a very good doctor. The meeting ended well and we felt good about how things were left. We felt like Samuel may have a chance at living through this. I also got the sense once again, that our Onc does care for Samuel, maybe not like his own child, but I pray that he will get there. I also think we have missed out on a lot of the support from other families dealing with cancer because we have been trying to keep him alive and not reaching out to others. I want to thank Kim S. again for taking the time to reach out to me and share your knowledge, your son and your love. I will probably feel a lot more sane talking with others following the same path.
I am still mad, I hate that this happened to Samuel, and any child for that matter. It is unfair to watch the suffering and see children die. I am angry that the only way to treat this cancer is by poison. I believe that this is NOT God's medicine. I pray that the people who are doing research are also using the money to look for other more humane methods to eradacate this disease. The first medicine on Samuel's Consolidation regimen is in the mustard gas family. It is only with the peace and grace of God that I will be able to watch that pump in to Samuel's veins. Please pray for that to overcome me. Please pray that when we get to the clinic to treat, treat, treat, I don't get the same feeling of kill, kill, kill. Pray that Samuel is one who does well, by their standards anyway. This baby has suffered enough and for NO good reason it seems. Don't think for a minute that anyone giving Samuel meds won't get checked and rechecked by me for dosage and compliance to the protocol from now on. Just wish I knew then what I know now, but in the first days of getting news that your child has cancer, your mind is on overload. You blindly trust that kind people are helping your child. I will never let my guard down again, in any instance where it comes to my children's medical care. Again, good lesson in the fact that it DOES matter where you get treatment.
So now that the decision is made, where do we go from here? Well, we are having serious talks about just getting a motorhome so we can travel to Seattle and make it more comfortable for Samuel. And if he is sick from chemo, at least he can lay down and puke can be cleaned up easier. And if we have to be in patient, we won't have to get a hotel because Anna is not going to be able to be there when he gets treatment. Further, when the clinic days are ALL day, we will have a place to go in the interim. It is not like we can go home. It will be a safe place for him to be when he has no white count, he won't have to wait in a hospital full of sick people and get sick. At least it sounds good in theory. That should make childcare simple since finding someone to watch them 4 days a weeks is proving impossible. And it is not like we will be seeing much of our house anyway. And I am SO READY to get out of here for a while. I need a break from this all, to think, regroup, figure out how I can mentally deal with the poison that I will have to watch go into Samuel. Possibly we can take a road trip often since we will be isolated anyway and let Samuel try to enjoy life, see things, do things, because you never know what tomorrow may bring. I want no more regrets. I want to see him have fun, explore, play, run. I know it is just a matter of time before he is walking again and will start sneaking into our bed in the middle of the night again. How we will enjoy that!
Special thanks to Jen V. and Tracy P for your gifts! Samuel loved the toys and the dipes were perfectly timed! Much love to you both for your generosity!
Enjoy the day like a child, with your family today. Samuel is sleeping and I have to go give him a big hug and kiss which will probably wake him up, but no time like the present. Much love!
Update 9/16/04
Just a quick update tonight as I am tired but wanted to LYK that Samuel did NOT get a spinal tap today. I ended up calling the clinic and setting up a meeting with our Onc, a leukemia specialist, the social worker and us for today. I got a few more interesting notes from docs who were asked for opinions on Samuel's case which were helpful. I printed a lot of them out as well as made up a list of items to be addressed at the meeting and gave them to each doc and the SW as well. I brought in a picture of Samuel from our Hospital Picture Page so they could all be reminded of his condition when we arrived at Childrens. We went over quite a lot and we feel it was a good meeting of the minds. We did, however, get a piece of news that is the missing piece to Samuel's puzzle, so to speak. It was sort of a double edge sword, good and bad at the same time. We are still trying to process this news and it's ramifications so I will post more about this when I am a little more awake and have had the chance to continue hashing it out with my dear friends who were just as floored as we were.
At any rate, Samuel continues to improve. Yesterday was the first day he decided that sitting in his chair all day was NOT an option anymore, he wanted to be on the floor and play. He asks for help to walk all the time and crawls around very well. Today, he crawled from the "big room" as we call the front room to the kitchen to find me. This was another first. He also sat alone in the bathtub tonight for the first time. He is still eating well and not puking as well as continuing his NG concoction. We needed to change his NG tube tonight so he had a few hours play time without it in. He really enjoyed that and played with Anna. Anna probably wondered where his tube was since she lides to try to grab it and yank on it. She is a quick one. He had a happy day today. He was able to get out and play at Nana and Papa's today for the first time in five months. He usually is too afraid to get out of the car but today he was very thrilled to go in and crawl around and play ball with cousin Shaye. He also talked to Kristina on the phone today, another wonderment since he has been so antisocial for so long. I think it was also good for him to go in to the Onc clinic and have a day where no one messed with him as well.
And my gosh!!! Thank you to Linda B. and Kristen W. Wow, your packages were so amazing, so wonderful and fund to receive. Anna is thrilled, Kaysha is JEALOUS!!! And Samuel was glad to have the Jammies from Linda because he had another blow out on the way to Seattle today. Thank you so much for your generosity to us! You have helped a lot, and I mean A LOT! Much love to you both.
Thank you all for your continued notes and prayers. With each passing day, I realize the impact of your continued prayers. It has become much clearer today to us that Samuel would have died without your constant prayers...thank you for holding him up, thank you for keeping us going with your continued kindness and friendship. Thank you to shose like Shelby who continue to reach out to me, please know I read every note....much love to you all!
Update 9/14/04
Nothing could ever be easy, but we did get some answers today. We will not be going to NY. The following is the culmination of the Onc's response to my note.....
"I agree that you can't just pick up and move with four kids, so you need to work with your local oncologist as best as you can. Your son's problems are very rare and your physician is stearing you through uncharted waters."
This hit me like a slap in the face today. Funny how you miss so much of the tone when things are written rather than spoken in person. We have mulled this over a bit and came to several conclusions on it's meaning and Samuel's prognosis. Mark said when we left MB for Seattle, that lawyers don't want to take cases they can't win, and doctors don't want to take on patients they cannot cure. My interpretation is that at the #2 rated cancer hospital in the nation, they have never seen a case like Samuel's and apparently don't want to. Monika and her dh Pierre offered that the doc was probably trying to be courteous rather than seem like HE had all the answers, or maybe he has enough patients already, or maybe he doesn't feel that we would get any better options there than here, etc. At any rate, the fact remains that in the hospital where they see the most high risk cases, they aer saying Samuel is "uncharted waters." I am shocked, amazed, saddened, horrified and afraid, yes, that about covers it. More on this in a bit.
I also got some responses from some independent Onc's who pretty much all agreed on the protocol our Onc is choosing and still considering Samuel high risk due to his inital white count and the fact that he has NOT been treated in so long. There was also a concensus that we are probably better off here at this point. But one made some points about the initial bone marrow at diagnosis, an integral part of the diagnosis is missing and possibly a molecular study could be beneficial in getting a good foothold on the protocol. He also felt that our Onc was being honest with us but it was integral that we trust him. I sent him some additional info and questions so I hope to hear back tomorrow. But at this point, they all seem to be of similar opinion. Mark says I was hoping for them all to say he needs no further meds... of course! Honestly, I was hoping one would have had a case with similar issues, or just be interested in learning more. None of the above. Seems Samuel is just special, which we all knew anyway.
So unless something falls out of thin air, we will be staying put. But we will be having a meeting of the minds again with the Onc and perhaps a few more at Children's to get our feelings and fears out and make sure they have a plan. I helped the kids pack backpacks tonight with books, and school work to take to the hospital when we go in. They need things to do, else they are just bored and get into trouble. Up until now, we have not been too organized but they want to do school now. I have some books for Samuel to work in too. He is so incredibly smart. His vocabulary has just exploded over the past few days. He wanted to dance with Kaysha tonight so we put on his favorite dance show and I helped him dance. He also crawled across the room for the first time tonight. He played chase with Kaysha but by that time he was tired but he laughed and laughed, then crashed in bed for the night.
Anna kept us up half the night last night so I am feeling tired, disorganized and hopeless at times. The e-mail from NY just killed my heart and wiped me out for awhile. I called Monika as soon as it came through and had to NOT talk for a lot of the call to not cry. This is one of those instances where a doctors words can change your world, kill a day that was okay to start. I am so tired of being kicked. Monika had Pierre give me his impression of the note which helped me get out of the funk I was in. I am thankful they call me friend, they care, they go through this crap with us on a personal level.
So now is one of those times I pick myself back up again. I have to remember as I type this and cry that I cry out to God, not just cry to cry. I already know THAT does no good. I will live my own words, The Lord Says Samuel is healed. I will believe that. Samuel would not be a miracle if he was just a boy who was unremarkable. God, I remind you that YOU are the miracle worker here, not the doctors. My trust is in you and YOU will not fail me. You have already given us a miracle, now Samuel needs to prove the medical establishment wrong in their dire prognosis of his case. I thank you that my prayers have no and do not go unheard or unanswered. Give me the faith to go forward as I need to. Lead me, show me where to go, who to trust, who not to. If there is someone else we need to meet, please reveal them now as we have a decision to be made Thursday. I ask in the Name of Jesus, Amen.
My mom and I prayed for him and layed hands on him every time she came in, we agreed together. We have such a large prayer chain for him, people I don't even know. Many continue to come forward and introduct themselves. They think words from a stranger mean nothing but they mean everything. They keep me going knowing Samuel is covered in prayer all the time. For the past months, people have come out and spoken words over Samuel that he will be a mighty man of God. He will have a remarkable testimony. He will save the nations. He will bring many to God through his witness. He will be a miracle. Samuel is a miracle already. Mark and I were talking about him seeming older mentaly then he is. He seems to understand and ask things that are beyond his age. He is so caring as he asks me if "I" am okay today. He tells me he is sorry, for what, I don't know. I tell him he has nothing to be sorry about. He is perfect. He wants to live, not be a statistic forgotten six months after his death. This child is a piece of my soul which I refuse to let go.
My mind is tired, my body is tired. Monika wishes there was a pill I could take to erase the memory for one night. There isn't. The feeling of looming doom is always there. I know it is a message that something is still not right. I don't feel at peace yet with this. I think that I have finally, after almost five months, figured out that Samuel has to deal with cancer. I guess before this, we were just dealing with keeping him alive. I have an appt with the ND in Seattle on Oct 1 which I will keep unless something more promising comes up. While I would like to walk away from the medical establishment, Samuel's other physical problems caused by chemo forbid it.
At this point, I would ask that you pray for our caregivers to make good decisions. If we are not with the right caregivers, may God direct us now. Pray for Samuel's strength. Pray for guidance for Mark and I. Pray for Kaysha who asked me if Samuel was going to die tonight. Pray for Daniel, who wants to ask the hard questions but doesn't. He acts out instead. Our love and thanks to you tonight.
Update 9/13/04
As much as we all prayed for Allie, she has gone to heaven tonight. I am so deeply saddened by this. Please keep her family in your prayers over the next months as they go home and try to pick up the pieces.
I think as a mom whose baby has leukemia, when someone dies from cancer it always leaves the question in the back of your mind of "will this be how your story ends too?" I really felt like this when Diandra died so suddenly. Samuel was not doing well at the time and it just hit me so hard. No child deserves this. No child deserves to die. No child wants to die. I question God, why???? A retorical question at best.
And of course, we are nowhere close to a decision for Samuel. The clinic called today to let us know we need to be there Thursday for his "back poke" as the stupid person referred to his spinal tap. I don't know why but I take offense to that phrasing. This is not some silly joke. The poison they want to inject him with may be the very stuff that contributed to his hydrocephalus. And it is proven in high doses in children under five to cause neuro issues later in life. Back poke, my butt. If only it was that trivial. And I have that sickness deep in the pit of my gut just thinking about it. We need to get some answers asap on this. I don't want them to do it. Especially if doing them now means these will be extra doses. Too many questions, not enough answers. I need to call and clarify some things tomorrow. Mark says I should not be mad at the Onc, but I think I will just hate them all for awhile. Samuel is doing so well, I do not want to go backwards. Seeing him hurt kills me, that is not what he deserves. He deserves to be happy, have hope, to not worry about tomorrow. He deserves to go to the beach and discover the ocean, freedom. He wants to see a real live duck so he can tell it "quack quack". He deserves to live a happy pain free and for that matter, puke free life. He deserves to not wonder if he will feel good tomorrow. Why is this so complicated? I guess if I could just get over the poison life threatening drugs which have proven just that, I might be able to get on with this. But I feel like I am standing on the cliff and about to be pushed off and I am desperately looking for the escape route. If we have to go through this, Samuel deserves a doctor who will love him and not want to see anything else happen to him. He deserves loving staff and a place to always be secure with his family. He should never ever have to be afraid again. He deserves joy, not poison.
And alas the picture of Alternative Medicine is becoming clearer. No one will touch him outside of conventional therapy. Too many legalities. The places that do both Alternative and Conventional start with teens about 16. Know why? Because they are of age to choose. Samuel is not... Interesting how adults are given the option to NOT get poisoned while children have no choices offered but poison. For all the links sent to me and all the calls made, I have turned up nothing but dead ends. Unless I go to a backyard place out in the boonies which is probably illegal anyway. I talked to Toni, my MW today and she thinks this should be my new mission once this is over. Perhaps. Parents should have choices other than what we are being offered.
Thank you to Kim S. for calling me and sharing your info and story. Visit Kim's page for her son who unfortunately has ALL too here.... I did contact Grace and she is sending my info off as I write this....hopefully we shall hear something that is clear and concise soon. I sent off Samuel's brief history to an independent lady who then sends it to the top Oncologists in the field for their opinions. Pray we get some responses tomorrow. As it is now, I have not heard from Sloan Kettering though I knew writing a doc was a stab in the dark. All these children suffering is going to drive me crazy. Is there any light at the end of the tunnel? Will I always live in fear every time they give Samuel some form of chemo? God help me. For that matter, God help my Oncologist, whoever he/she may be. God please just send us a good one. If I thought they at least cared, I might feel a bit better, maybe....I think I am a lost cause. Please continue to pray for wisdom for us, answers for our treatment and for them to come quickly. I can not put off Samuel's treatment forever, that I know.
One a happy note, Samuel walked down the hall today and exclaimed, "I am walking!" He was a happy happy boy today. And he crawled really well. We got to go to town to Fred Meyer and he ate a cookie there. He even spoke to the nice lady at the coffee stand rather than covering his face and screaming. And no puking. I could get used to that.
Some wonderful ladies have written me and opened up their homes to us if we should go to NY. And I know exactly who you each are, thank you! You are so kind. It is our hope that if we do go, that we can stay at the Ronald McDonald house if it rooms six so we can be as close as possible to the hospital. We may as well move to where his treatment will be because based on the look of the protocol being specified, we won't see our house much anyway. He may as well puke on someone else's carpet. We would love to visit you ladies should we go to NY anytime but we will have to live away from people while Samuel is in major treatment because his immune system will be compromised and he can get sick from his OWN germs. It is so annoying. Much love to you all.
I almost forgot the other good thing that happened today. I finally made it to the eye Dr. so I could get some new contacts (thank you BBB ladies). I went to a Walmart one because I could get in today and that was important since I never know what is giong to happen tomorrow. My contacts are two years old and daily wear that I wear like extended wear especially when living at the hospital. They have been so awful to wear that I have been tempted to throw them in the garbage on several occasions. Only reason I don't is that my glasses are worse. I feel like a drunk in those. I run into the walls, trip on the stairs, I would rather be blind than wear those awful things. Anyway, I was able to get new contacts in disposables and extended wear this time. Up until now, no one has ever made disposables in my power since it is pretty much unheard of for anyone who is legally blind to even wear contacts. And even better than that, they actually had one in the right RX and size for my right eye that I took home today.... for free! How awesome is that? My right eye has been so irritated from abusing the lenses that it has little bumps under the lid that when irritated flare up and make the lens almost fall out of my eye. Quite a pain. The new one feels like heaven. And the doc even gave me some eye drops for that eye at no charge since I was paying cash....no ins. for me or Mark since no one is working. So that was really awesome. Wish I had done it sooner. Probably would have spared me months of misery.
Kristina told me tonight to write to Oprah who is doing something on her show to help someone's wildest dream come true. My wildest dream right now is for something to pop our ot thin air that works. Someone who knows how to treat Samuel, a place to live for all of us, a way to get there easily, the arrangements to be made so we can go asap, all the insurance stuff to be handled, all the loose ends tied up, and Samuel to get well, for good. Let this all be a bad dream that I someday wake up from and feel joy again. Mark told me that giving the Onc a "back poke" of his own was probably NOT a good idea. Hmm. I know they are not the enemy here, but I just hate this. The thought of it all starting over is leaving me unsettled. Thanks to all who kindly keep praying. Our love to you.
Update 9/12/04
"We want to give Samuel the best shot at a normal life without killing him in the process."
This has been the theme of our discussions with each other and close friends over the last few days. A lot has happened since my last written update.
We went in for the cysternogram on Friday. We had to get up at 4am to get to Seattle on time. Absolutely ridiculous but I wanted to sleep in my own bed if only for a few hours. The kids ALL fell asleep on the way in which was a treat for us. We ran into Mangesh who always stops to chat and see what we are up to there. Samuel even talked to him for the first time. Usually he screams. We met another family whose daughter was 10 and just finishing up treatment for a hodgkins lymphoma. Her hair had just barely started to grow back but she and her father were very happy to be done with chemo. Kaysha asked if she could play with "him or her" as she put it. Funny how the hair makes all the difference. I was proud of my kids for not caring if she was a girl with a boy haircut. They made fast friends while Samuel went back for the scan. The test was concluded after the first scan and we were done. We were supposed to wait on our Onc to see the test and chat but we decided to ditch that and go home. Everyone was tired and sick of that place. Se off we went. The results of the scan did not even matter at that time. Our Onc could call us if it was that important. We never got a call. All that mattered was getting away from that atmosphere. Samuel handled the ride amazingly well. We were on I-5 almost to Federal Way and I told Mark we should go visit Mary Bridge. It was 9am, and usually we are never out that early and we could do that and still get home in a reasonable amount of time.
It was really nice to see the wonderful friends/nurses at MB. We ran into Mike, Tammy and Christina right away and they were thrilled to see us and Samuel. Samuel got over his inital fear of them and then became fairly friendly. They took his picture to show the ICU staff, mainly Abbey and Patti who were unfortunately not there. We went down to the regular floor and ran into Kim, who will always be special to me because she was the only one who cared when Samuel had the active hydrocephalus. Mary, our favorite social worker found us in the cafeteria and visited for quite some time. Everyone was curious as to what all had happened and if we were continueing treatment there. We told them we did not know what we would do yet. I missed seeing Karla who held my head above water on several occasions though. We wheeled Samuel in the stroller on the regular floor and he spied a bed and asked to be put in it. We told him he did not have to get in those beds ever again. We took him to the playroom where he was happy to sit on a toy car and play a xylophone at the table. He was so cute! We joked with Mary about if we could just integrate MB and Children's add all the good things, throw out all the crap and make it a decent driving distance from our house, that would be great.
We spent the rest of the day resting. Samuel had a very good day. No puking at all. He seemed to be feeling quite well. We went to bed early as it seemed like we had been up forever.
Yesterday was an amazing day for us. Samuel was a happy happy man. And I mean HAPPY! He asked to eat something OTHER than crackers, a banana. I have brought them to him before and he will say he wants it until I undo the peel then he screams no. But this day, he ate it and liked it. Mark made bread in the bread machine for dinner and he was thrilled to sit in his high chair and EAT! He also sat in the walker for about 15 minutes. I took him out into the living room and sat him on the floor and he was able to sit by himself, and he wanted to. When we were on the way home from Childrens the day before, we noticed he was leaning forward in his car seat and stroller and just much more active than in the past weeks with his upper body. We always wondered if the VP shunt crossing his abdomen bothered him. That seems to be the case because what we saw him do yesterday proves it. After sitting for awhile, he also was willing to stand and attempt to walk. It was AWESOME! He walked pretty well with support. I was surprised because he has not walked in about four months. He did not scream, cry or ask to be carried, he enjoyed it. And everyone came out to praise him, which he enjoyed even more. He also wanted to sit in the rocker rather than the bean bag and sat by himself there very well. Well enough to enjoy playing with Dad. It was just incredible. When the PT's talked about taking off and catching up, I wonder if this is what they had in mind. Our PT, Debbie will not even believe it when she comes. And she thought he was doing well the last time she was here.
The local newspaper interviewed us yesterday as well in regard to Samuel and the auction. As Mark and I gave Jessica, the interviewer, the brief lowdown on Samuel and what has all happened, I think we had an unconscious conversation with each other at the same time rationalizing the entire events of late and coming into a loose agreement of how to proceed. She wanted to know how we felt about Samuel's prognosis, did he have a chance? Mark says he will make a full recovery. I say he will too, but most likely NOT here. We are seriously discussing going to Sloan Kettering in NY again. When I say seriously, I mean, Mark is talking about it. He is not too impressed with NY, or living there for awhile. Jessica asked how we felt about the auction and honestly, it all coming together has been a surprise. It has been at the back of our minds simply because of Samuel's acute problems, but now with them seemingly resolved, the auction may well be the difference between staying here and taking our chances or going to the top place for Samuel's treatment and perhaps saving his life and the rest of his functioning organs. So it is our prayer that the auction is a huge success because we just may use that money to temporarily relocate to NY while Samuel continues treatment.
I have not ruled out Alternative Medicine, just cannot get anyone to want to do this with a child. I can see many reasons why they would not want to.....but this is still an option for adjunct therapy. The place in Seattle will see him but our ins of course won't cover it. It is worth the $500 fee to get a plan in conjunction with Children's but I am feeling like if God wanted us to go that route, He would not leave the burden of payment on me. Especially with our Onc at Children's acting like a flake suddenly. I will say this, obviously Samuel's diet is agreeing with him, he is radiant! He is joyful. One thing that annoyed me so much at Children's this last time is all the crappy food they feed kids. Here they have all these supposed dieticians and it is okay for them to eat chicken nuggets and french fires two of three meals a day. No wonder they are all sick. Eating there would make anyone sick.
I got one note from a friend who told me "He (Samuel) is without a doubt a FIGHTER! This little man wants to live!!!" He DOES want to live. All children want to live. They don't have the mental capacity to give up at Samuel's age. He knows he has missed out on life. I can see it in his face as he continues to play with a lot of the toys sent by you lovely people like it is the first time he has seen them. He hugs and kisses them like they are all new to him. The blanket lady came through Children's on the last day and our lovely nurse Ly, picked a very cool blanket for him and he hugged and kissed it and then blew her a kiss and a thank you. He LOVES blankets and we use them all the time.
Samuel wants to live. He is trusting me to make that happen. His fate is in our hands so we want to put him into the most experienced hands we can find. I don't want to do chemo, I feel sick at the thought, but I don't want to watch him relapse and die either. He doesn't deserve that. He does not deserve to be sick at all. No child does.
I don't know how things will happen at this point, or if we will even go yet. I lay this in God's hands and pray just as I did at Mary Bridge, that if there is a better place, that He lead us to it. You know you are going where God leads because paths open up that seemed blocked before. If we are to go there, He will make a way for us. We will know it is right because the means will be there and we will have favor there. Right now that seems very overwhelming to think about but Samuel deserves someone who won't guess about his care, but will KNOW what to do. If it is in NY, then we will go. If that is not it, then I pray God lead us on to the right place very soon because time is of the essence. We need to get onto the right path so we can all have a life again soon.
The main Onc for leukemia at Sloan Kettering is the one I had our previous Onc confer with months ago. After that task, I sent him a personal thank you e-mail, which he responded to. He took a major interest in Samuel then, and I hope he will do so again and answer the few questions I asked. Another lady wrote me and prays I will find a doc who will love Samuel like his own. Let that be all our prayers from now on. We need to find someone who will not view him as a chart but will see him as we do, a loving boy who is a miracle. He has a future on earth and that is not one of burial. He is not going to follow the norm and we need a doc who will taylor a treatment plan for him and care enough to make sure nothing more happens to his body. I just feel like Samuel has been given his life back, I am not going to let just anyone take over his care, especially when they have very little hope for a good outcome.
Samuel had an even better day today. He played in the rocker for a few hours and sat in the walker for a few hours. This is so good for his upper body. He ate another banana before bed last night and one upon waking. He also had his customary crackers but also drank lots of water. He played really cute with Anna, showing her his toys and saying "here, Anna, see Clifford?" He loves Anna. In fact, one thing I noticed while at Children's this last stay, was that when our whole family was in the room, Samuel was really happy. He loved Daniel and Kaysha to crawl in bed with him and visit, play, whatever. Whatever we do for him, we need to all be together. He is back to his lovey boy self, at least to us. He screamed every time Jessica, the reporter, even looked at him if he caught her glance. He is still very petrified of strangers.
He walked a lot today with help again. It is just so cool to see and help him do. My mom came over and brought dinner, Samuel's favorite, Stroganoff, though she did not know it when she came. He wanted to sit in his chair again and he ate TWO bowls. He did not want to get out of his chair, he was MAD when I finally cleaned him up. He enjoyed sitting there with everyone. It almost felt like old times. He had eaten another banana just before dinner so I think we were all surprised to see him eat so much. This was the first real dinner he has eaten. He fed himself too, which is saying a lot since he just barely started sitting alone. AND most importantly he did not throw up. He is very determined to live and be normal again. My mom asked when he will not need the NG and I told her that it is his lifeline right now. I hope to keep it as long as he undergoes major chemo because I can put all kinds of good stuff down it, even just plain water if needed. Today I had to tape it to his shirt so he could play though, it is a pain to manage it with an active child. I am just so thankful to see things I could only dream of actually come to pass. Thank you to everyone who enjoyed the pics enough to send a quick note. It is your prayers that got us here. Your prayers will see us through. Someone else sent me a note that "If God brought you to it, He will bring you through it." He is. I don't know what the future holds right now for us, where we will live, or go, or what will happen tomorrow. We will make whatever sacrifices necessary to see that Samuel get the best care and live a long life. I pray and ask you to specificly pray that God show us promptly where to take Samuel, how to proceed, and guide and guard us all. Pray that if we continue with conventional care, that Samuel have the armor of God keeping his body whole and strong and that the wisdom of God be with our providers, whoever they may be. Pray that they will LOVE Samuel. I don't know who wouldn't love him, but obviously we have had docs who did not treat him like their own.
Samuel talked to Monika tonight. He told her "hi", "love you" and "bye bye". He usually won't talk on the phone at all. In fact, when at the hosptial this last time, I asked him if he wanted to talk to Dad and he screamed no. I guess he knows Monika is a very good friend to Mama and made an exception. Kristina will be jealous!!
Special thanks to Alexis for the gifts to Daniel, he LOVES them! Thanks also to Kerry for sending the Wiggles to Samuel. These were well loved on our last stay at Children's. Well loved now! A lot of people have asked about our needs. Today after dragging out the boxes of saved clothes from Kaysha, I realize that Anna has only a few choices for winter clothes. For some reason, there is a gap in my clothes from 9 months to 3T, very few things. I think I got rid of them all because after Daniel I wasn't haveing any more kids..........Anyway, any winter clothes, sleepers, etc in size 12 or 18 mos would be kindly appreciated and well loved and an incredible help right now.
Thank you to all who love Samuel, and want the very best for us all. Thank you for your prayers that hold us up on the days when we get kicked in the head, the days we need to regroup and the days like the last few which have been wonderful even in the midst of scrambling for answers. Our love to you!
Update 9/9/04pm
We are home for the night, but have to be back at 7:30am for the rest of the cysternogram. I could not stay another night. Samuel is resting, a happy happy man to be home tonight.
Thanks to everyone for your notes tonight. I spent many sad days and nights at Mary Bridge when the Tim Mcgraw song "Live LIke You Were Dying" was just becoming popular. Every time I hear it now, it reminds me of that time. A time I felt like Samuel was close to death. It reminds me to cherish every moment right now, not only with him but with all my loves. Try to cherish every moment you can. Much much love to you all.
Update 9/9/04am
Samuel is looking and feeling much better today. Neuro Surgery is very pleased. He is a happy man as I write this other than being starved waiting for a spinal tap...ugh.
Yesterday started out so well, amazing how a few words can ruin the entire atmosphere and kill the day.
Samuel woke up pretty happy considering. But unfortunately, he woke at 3:30am. And between him and Anna, that was the end of my sleep. So I was already unimpressed with the day, but who am I kidding, I am unimpressed period right now. Samuel had a good morning, eating well, absolutely NO puking at all. I don't think he has puked in 4-5 days now. A world record for him. We had Julie for a nurse yesterday but my joy to see her was dampened by our Onc's promised visit. He came in on his day off to see Samuel, which was nice, but I can tell he is growing tired of our presence. So I had my little talk with him about the future. Today is the cysternogram to check flow. Assuming flow is good and gets to all parts of the ventricles, we will go home today. The plan then would be for him to receive four spinal tap chemo/poison injections every week for the next month. After the first one, they will tap the shunt to be sure that the dose is not too toxic. Doesn't that sound joyous? Personally I want to be sick. If they find the flow not adequate, then they want to turn up the shunt pressure which will cause neuro problems with Samuel not to mention massive headaches and we would need to come in two days in a row to turn up the shunt and then turn it down again. So I asked the onc how much good he thinks the poison will do for the CNS when it is just going to flow in and flow out. He thinks that as long as there is a certain level in the CSF and it touches all areas, it is fine. He concluded in telling me that they have no clue what the chemo does in a normal person's CSF. Boy, doesn't that sound promising??? I am amazed that they will actively poison kids and not know what it actually does and have no problem with it, and yet, when Anna needed an antibiotic for the supposed Whooping Cough we all DON'T have, no one would prescribe for her without seeing her first. Pisses me off. Obviously she has no PCP right now as we spend so much time here at the hospital. This life should be a good argument for vaccinations but yet, we have avoided all the "bad" stuff.
So anyway, that comment was daunting. And then I asked him how he felt about our prognosis and he said " I feel about as good as I can feel." Okay, now what exactly does that mean? If you know, please enlighten me. He said given Samuel's complications, he has nothing to compare him to. When we started this, we were told a 70% cure rate. Cure meaning living five years after the end of treatment. But with the shunt, those chances are reduced but no one will say to what.
So then I asked him what the plan is for the treatment. My day was already bad, but this killed it. He is planning to do the four week spinal taps and then acess his physical state. When we begin, we will start consolidation on the High risk protocol. So two months of intensive, drop the white count to zero, chance of infectiion, risk, complication, death, high type posioning. All poisons he has never had before at the highest doses. So when we begin, we have to be in patient for the first night so they can give him the poison that ruins your bladder. You have to get tons of IV fluids and a drug called mesna to try to offset the poison. And not to mention the antinausea for puking, but we are already used to that. Doesn't that sound good? And then for the next four days we have to come into the clinic for more IV poison. Then I think he gets three days to be sick and then we come back for three more days in a row. By the tenth day of this regimen, his counts will be very low, where infection risk is high, etc. I feel sick. My insides are screaming, NO WAY.
Then after two months of that crap, assuming we get that far since we see how well we did in the first month of so called treatment, he will do another interim maintenance, similar to what we are doing now but with the addition of Vincristine, the drup we think helped the demise of his colon. I told him we weren't doing that and he said that would be one thing we may compromise on. And then back to reinduction, basically the first month of chemo all over again. I told him we were not doing steroids either. So I am sure he was impressed. And assuming we make it through all that without mishap, then two and a half years of maintenance poison where we do the oral poison and come in once a month for IV poisoning.
After picking my dropped jaw off the floor, I called Mark to start the lfirst of many long conversations about what we want to do. Trying to decide the fate of your child over the phone is no fun task. Especially when there is a six month old screaming her protest. It is harder and harder to be here with both kids alone and try to deal with the future too. The entire day sucked. We pondered our options, or lack of options for Samuel. Nothing put a stamp on how bad chemo was for Samuel more than seeing the pictures from my mom. If the drugs make you so sick that your body malfunctions, and you cannot continue treatments, how is it of any help? And when the problems are permanent, then what? It has taken them four months to sort out problems from three weeks of poisoning. We are very lucky his leukemia did not come back or we would have never went home. I don't think his body can take the chemo. Trying out more drugs that are new does not interest me. Neither of us want him to die but neither of us want to continue living in the hospitals seeing him traumatized. We don't want to continue treatment if that means more life altering complications. It is not fair to Samuel, not fair to our family to live in this way. Samuel is very fearful of the staff after his surgery. Anytime anyone knocks on the door, he comes unglued. And now I am sitting here listening to him ask me to eat, telling me he is hungry. He cannot eat due to the dye study today, he has to have the dye injected into his spine. Ugh. I told Mark this morning I am ready to leave and NEVER come back. It just occured to me that today is Daniel's birthday. I forgot with all this mess going on.
We had one of our favorite nurses, Esther, last night who hit the nail on the head when she said that it is scary to come back in because you never know what will happen. And Samuel has proven that this is very true. Thinking of chemo, and complications and the roller coaster of hardship and pain and suffering Samuel endured is much worse than the cancer.
I did some research on the relapse rate of high risk ALL. It is very high for children with a white count of over 100k. Even going thorugh the three years of treatment, the majority eventually relapse. Then the option is to do a bone marrow transplant if the relapse is in the bone marrow. If it is in the CNS, then more intense poisoning and radiation to the spine and head, which we already mutually decided we WON'T do. He is not going to thank us for being mentally or physically retarded. So we don't know the answer. There are no easy answers.
On a good note, the ND clinic here in Seattle that deals specificly with cancer does deal with children and leukemia so maybe they have some better answers, or can recommend a different option.
Or course, the dietician from Onc has never come to visit us. And you should see the looks I get when Samuel's food continually pumps and he pees well. Esther asked me if I thought it was too much, and I told her on their recommendation, he never peed. And if they had a problem with it, they could speak to me directly since they have not been bothered to offer any help. When people start dropping the ball with your childs care, that is then the alarm bells should start ringing.....and they are.
Looking at the Alternative Medicine aspect, your body has cancer cells in it all the time. With a normal immune system, they are killed off before causing problems. Treating cancer with Alternative Medicine focuses on diet and immune systems. When you really get to looking into it, it is obvious why cancer relapses so much. Killing off a person's immune system and replacing it with antibiotics makes no sense. While they think they kill the majority of cancer cells by doing this, they also kill off any chance your body has to fight it itself. And getting an infection in this condition is very dangerous, as we already found out. Our former Onc told us somewhere in the middle of all Samuel's problems that a % of patients don't live through the first month of chemo due to infections and complications. Just some food for thought.
Thanks to everyone for your support this week. Your notes help a lot as we try to sort this out and make the best decisions for Samuel. I pray to be going home today because I am going crazy here and trying to have the kind of discussions I need to have with Mark suck over the phone.
UPDATE 9/7/2004
Samuel now has a VA shunt. This would be surgery #9 in the last four months. I remember asking the Infection Specialist at Mary Bridge how many surgeries Samuel could go through and he told me, "more than you or I." I asked that when we were on surgery 4. Little did I know.....
Samuel is a very sad man. He is hurting a lot. Dr. Avellino said his part was easy. He pumped another 600cc's out of his abdomen and replaced the shunt valve. The general surgeon that did the tube placement into Samuel's atrium was the chief of surgery. I guess they had to call in the big guns. Samuel had so much scar tissue in his neck from the previous VA shunt that it took them a long time to place the tube. After many failed attempts, they got it. But because of this, he is very very sore. He came back on 4 mgs of morphine which is the most he has ever gotten after a proceedure. He looks like someone hit him in the face with a 2x4 because he is really swollen, He is basically in and out of consciousness but when he is up, he wants to eat and drink. But he is a bit out of it so will ask for a cracker when it is already in his hand. Dr. Avellino said his ventricles looked smaller than the previous CT in which they looked larger than the previous, if you can follow that. Basically, they are smaller than expected which is good. I am glad the shunt is done since obviously the abdomen was not going to absorb no matter how much we all prayed. So my prayer now is that Samuel's misery will not be in vain. I hope that this is better, and how couldn't it be? We know we can dump lots of fluids in the blood and he can handle that. So if this means no more surgeries until we decide to have his intestines hooked back up, that would be GREAT!
Taking him to surgery went well. I could feel your prayer covering. But the day started out horribly. I called the ER at 7am to see what they wanted to do about the whooping cough crap. They did not call me back until 8:30am to let us know that the doctors wanted to proceed as did we since it was obvious his abdomen was full again. However, we had to wear masks, all FOUR of us. I had a fit and called the office since there was no way Anna would keep a mask on and we weren't going to walk around all day with masks. This is hard enough without trying to keep masks on too. So after a bunch of run around, the Onc called me to say they would find a room for us . But of course, they did not. They never asked Anna to wear a mask though, which was good. Now we are back in the surgical unit and no one has mentioned us wearing masks and I am not reminding them.
When we arrived and were about to get Samuel into the stroller, we noticed he was sopping wet with poo poo juice. His poop bag came apart from his skin on the way and it dumped all over him. We had just changed it this morning so it was strange. And he was very upset. We did not arrive to the Onc clinic until after 11am with all the hold ups and confusion. Sometimes it is hard to believe that this hospital is rated 9th in the US.
Samuel went back to the surgery room and we were able to go with him and be there the entire time while he waited and then went off to sleep. As he went off to sleep, he asked me to give him a "huggy" so he went to bed with me hugging him. Sadly he did not get to wake up that way. But it was not as stressful and I did not have that bad feeling like I had for the previous surgery. I think I was too mad to be sad. And somehow I knew it would be okay. His blood work is still awesome and notably, his liver function counts are coming down. We are doing something right.
We got our fav nurse, Julie and she will be here tomorrow. Anna and Samuel and I will be here until at least Thrusday, possibly Friday. Hopefully not that long, but tomorrow he has a day to rest and then the cysternogram is scheduled for Thursday. Julie will be here again tomorrow so at least if I have to be here with the kids alone, I have someone I like to visit with.. I have Reggie tonight who I need to add to my list of favs for sure. I had her way back when we were first here, when Samuel was not doing anything. People are still coming in just to see him talk, etc. Dr. Greene commented about his hair tonight. Funny how hair makes a lot of difference in the appearance.
I pray Samuel will have a good night and better day tomorrow. I continue to feel like a horrible mom for allowing people to cut him up so I pray for relief from shunt problems, NOW in the name of Jesus. Let this work, and be an advantage and not a downfall. Maybe we have a chance for a little normalcy for awhile. We really want to try to get away to the beach for a few days once we are sure Samuel is okay.
I need to get out of here. My mental attitude sucks. I am overwhelmed with anger. It psses me off that the treatment for cancer is poison. Do you know that they are trying tp approve Arsenic as a chemo drug? Want to be a tester? Do you know how they test these for toxcicity? They randomize groups of people and give each group a certain dose ranging from low to high. Then when people die, or have massive problems, they decide that was probably too high of a dose. The problem is that not everyone reacts in the same way. Hence, Samuel. Stuck in a high risk category and given a standard dose which was probably fine for some tester, but wrecked his body parts. Am I the only one finding something wrong with this picture? Am I the only one mad that the drugs are so awful that if you have enough adverse reactions, you cannot even get the treatment for fear it will kill you. I remember asking our former Onc if the treatment was worse than the cancer. He said he did not think so. Wonder if he would put his kids on the same protocol as Samuel without question? I am angry. I need to go to bed.
Thanks so much for your notes today. God often speaks to me through you and leads me on. Much love.
Update 9/6/04
"Do I really have to pack?" I just asked Mark that before coming up here. I favor journaling to packing currently. Just a part of the denial I guess. Mark says he can just take Samuel and stay alone, but I can't let him go without me. He wants Mama, not Dada these days. And I want to be sure he gets fed OUR food. And of course, Samuel is having his best day ever today. Just a happy happy man. Hasn't puked in two days, eating real food in conjunction with his 1800cc's of nutritional concoction. He now likes to lay on the floor with a pillow under his tummy and color. He has no idea what his fate will be tomorrow. And we don't know for sure if it will happen either because of the stupid whooping cough. We are all considered to have it until we have been on abx for five days. So Oncology, being stupid as usual, thinks we will come in and acess his condition and then decide on surgery. Does the OR know? Of course not. I informed Oncology we would NOT be driving in to be sent home. I will be calling the OR at 7am tomorrow to discuss the abx issue and Samuel possibly exposing them all to whooping cough. Apparently the outbreak was so bad it was on the news. I am still very very mad. I am glad he was not neutropenic at the time we were in the ICU, which we should NOT have been there anyway. I distinctly remember pointing that out to them and asking to leave too. I wish I would have been more adamant now, but I probably would have been thrown out. So, if they decide it is okay to go forward tomorrow, his VA shunt will be done. All the current shunt will be ripped out and a new one put into the atrium. That just makes me sick to think that for as good as Samuel feels today, tomorrow will be a painful day for him.
While Samuel feels great today, I can feel the ball of fluid in his abdomen. And as Mark says, taking him in every week for a tap which requires him to be tubed for a 20 minute proceedure which ends up taking 8 hours out of our day is ridiculous. And he is doing well in the food department now so I want to keep that up. Maybe having the shunt drain into the blood will be a blessing....that will just be extra fluid to fight dehydration. But I seem to be kicking that in the butt as he wet 10 dipes yesterday. The thought of taking him in for this sickens me. I am sure I will feel even more sick tomorrow. Today I am still living in denial a bit about it. I am starting to hate that place. I want an excuse to get out of it, but if the surgery does not happen, we will have to do another tap. He weighed 32 pounds today. But I actually think he gained weight from eating which is good.
After doing the picture page last night and really looking at Samuel's condition, I am SO glad we went to Childrens. Thanks to those who sent us notes that strongly suggested we seek a different hospital for our care at the risk of offending us. We knew it when we got your notes, it just sealed the deal. Making the move was difficult on everyone. We did not know what to expect, we did not know if it would be a "good" change. Only a few nurses at Mary Bridge were honest enough with us to say that we needed a different set of eyes looking at Samuel. We needed fresh minds to try to put him back together. We were tremendously sad to leave MB because after almost 9 weeks, it does seem like home. You get to know the nurses, they get to know you. We had a lot of favor there with the nurses and got many things offered to us that others were denied. Many of them were my friends whom I now miss very much. And moving him to Seattle was so much more inconvenient because we had to move up there as the commute was too much. But upon arriving there, it was SO obvious that everything was different in a "good" way. Had we stayed at Mary Bridge, Samuel would either be dead today or we would still be there trying to sort out all the problems. Why can't doctors just refer a patient on when they become too complex. Monika's words really hit hime when she reminds me over and over that if you have a rare cancer, you NEED to go to a place that deals with a lot of cases, and is successful. Not stay in a small town hospital where you may be their first case and they want to "prove" themselves. I write this as I ponder what our next move will be. They keep dropping the ball with Samuel's care leaving things to chance. Mark says we can't just keep leaving when I get pissed off, but I assure you, we can.
Sandy found me a ND clinic here in Seattle who coordinates cancer care with your Onc. I will be calling them tomorrow to see if they deal with kids. After hashing it out with Kristina and Monika, it is still unclear what the answer is. But I look at the pictures I put up from yesterday and I know that poison therapy done by someone who doesn't care about your child enough to say when they are at the end of their expertisxe is NOT for us. At any rate, Mark and I continue to hash it out. He still wants active poisoning, I want to flush it all down the toilet. I do not believe that poison is God's answer to cancer. I don't know what the future holds for us right now. Please pray that I will hear what God wants us to do. He has allowed a wrench to be thrown into the whole treatment plan for Samuel. A wrench which make
