Update 12/16/04
Well, poor Samuel's bag exploded last night so we woke up in a puddle of poop this morning. What a wonderful way to start the day.....sometimes you just can't win for losing. But despite this, he has had a nice day. He has been running around non-stop and thinks everyone is his personal pony to ride.
We have had a nice quiet day home, but of course, it just goes by so fast. I want to do so many things but run out of time. We talked about doing some Christmas Cookies today but decided to wait until our three day weekend to make the mess so there would be time to clean it up. We hope tomorrow will be a quick day in Seattle. Samuel's brusies are about the same, not worse, not better. But the skin around his stoma that was broke out earlier this week now looks really good so I have to believe his white cells are working well. They may still be low though since he will be using them to repair the damage from bruising, etc. I guess I won't be surprised if he needs platelets by the look of him today. With low platelets, you can get a bruise from someone simply grabbing your hand, climbing up on a hard chair or everyday play. It is so annoying.
I made him his regular food today hoping to get his body on track again generating healthy cells and a lot of them. We shall see tomorrow.
Bed early for me tonight, I am tired! Many thanks for the prayers, well wishes and friends who continue to check up on us. Much love tonight.
Update 12/15/04
The day went well but was very long. Only made longer because I stayed up late last night and was awoken very early by my unfriendly alarm, A.D. whom you would think could at the very leaset wake up happy if she absolutely HAS to get up at 5:30am. What a pain! All of my other kids got up early but were happy, She wakes up in a bad mood about 6 out of 7 days a week. I am so tired right now that I am waiting for Pooper to poop himself out so I can go to bed.
The drive to Seattle the last few days has been long and plagued with accidents all around us. I find myself praying at some point on the road that we will live through this day, this commute and the whole thing in general.
Samuel did great today, in fact, this is just another day I was so very proud to be his mom. I would not go so far to say I was a nervous wreck today, I like to save that for surgery days, but I hate the shot days with a passion and I feel so badly for him. His dose came up in two vials this time, which was better because while he got two pokes, they were done simaltaneously and the vials had very little poison in them. He cried but never kicked the nurses and got over it within minutes. It was more tramatic for me I guess. He has had no adverse reactions either. He played happily for the hour we had to stay. It must have been shot day today because it seemed like everyone was crying in there. I found myself praying for the kids we passed and heard. What a horrible place.
My poor kids are getting stir crazy. Kristina and I always laugh when I tell her that all Kaysha's friends at this moment have cancer, but it is true. Kaysha read bits of her diary to me tonight and it is remarkable to see the world through their eyes. If you ever want a good laugh, let your daughters have a diary and encourage them to read it to you. But at the same time it is eye opening. They get a bit neglected with all the focus being on Samuel the majority of the time. I look forward to a time when they can get involved in some activities. Kaysha wants to dance again, or maybe do gymnastics. Daniel pretends he knows karate so we will probably look into that for him. Our plan was to get them all in swimming lessons again, but obviously a little detour occured. At any rate, they are finding it hard to go to the hospital daily and behave.
Last year at this time, I was worried that I might not get them all new bedding before Christmas and ended up having Samuel's Blue's Clues set overnighted because I did not find it until the last minute. He was so thrilled with it. They all were thrilled with getting new bedding. Now, I keep the bedding I got Samuel for Christmas packed in a suitcase for hospital trips so he will have something familliar when we get there because it no longer fits his bed. He had a twin bed until he got sick, then he wound up with our old queen so someone could snuggle with him as needed. Funny how much can change in a year. I was talking to Mark about last year at this time, boy did we have no clue what we were in for. Anna getting RSV and spending two days in a hospital when she was only 19 days old was just the warm up for this nightmare.
Now I sit and cuddle with Samuel and play with him and watch him running around like a "nutty" as I call him, and life is just so precious. We are so lucky. He is doing great today and a happy happy man who is still eating us out of house and home. Mark had to make a special trip to the store tonight just to get him food. His eating has really picked up in the last few days. His weight was up to 14.3kg from 14 last week so that was really good.
I think his platelets have dropped more. He has bruises that are small forming all over him similar to when he was first diagnosed. They don't expect us back for labs until Friday but if this gets worse, we will have to go in sooner. Please continue to pray that his counts recover and he continue to thrive despite the poisoning. Thank you all so much for your continued prayers, notes and support. Much love tonight!
Update 12/14/04
Things went well today thank God! I never had a major nervous or uneasy feeling about the Vincristine. I had a few moments of wanting to tell them to shove it, but reminded myself that God was bigger than any poison and that seemed to help my mentality a lot. I asked the Onc how he was feeling and his reply was "anxious." But he tried to reassure us both, I think that most kids do fine on a half dose. Samuel is doing great! Again, you would not even know he got chemo. He is bouncing off the walls and completely happy. No fussing, no blockage, no cramps, no nothing, however, this drug can have side effects a day or two later so we will be watching.. But he is still trying to eat us out of house and home. Tonight he walked around with a bag of bread. I wonder if he is trying to make up for lost time!
His counts did prove interesting. I am a bit floored by them because I expected them to be up.
WBC 1700 (up a little)
ANC 323 (up a tiny tiny bit)
PLT 62k (plunged!)
HCT 27.5 (down a little)
I guess I was expecting by his behavior that he would be going up and the ANC and WBC are only a hair up, which could just be a counting error so we still need to be really careful about cleanliness and exposure. Right now, I just feel like God has our back. The Onc is still trying to figure out why Samuel still has hair. He should have lost it well before now and still no sign of it coming out. I am so thankful, so relieved that today is over and he did fine. Tomorrow is the day for the Peg Asp injection, the one that hurt like crazy, the one where we have to stay an hour after it is given to be sure he has no life threatening side effects. I read a statistic today that 50% of kids given this infection will have a reaction to it at some point. I think this is one of five injections that are left on the protocol so please pray for Samuel tomorrow. I HATE having him poked but there is no other way for this to be administered. Of course, if he has a reaction, he will never get it again, but as we have learned from past experience, the "watch and wait to see if anything happens" philosophy has bitten us in the butt before. Please pray that his body is protected tomorrow from this poison and that it only kill the bad, should there be any. We will have to go back Friday to see if he will need a platelet transfusion since they have dropped so much. Pray that his counts recover now and stop falling. Thank you for all your prayers and notes of encouragement today!
Special thanks to my dear friend Zen Bliss for the package. A.D. and Pooper will fight over A.D's toy. Kaysha and I are saving ours for Christmas. It touches my heart so much to know you thought of us. God bless you and all our love!
Love to all tonight, enjoy the small victories!
Update 12/13/04
We were some of the lucky ones here without power yesterday for about 7 hours or so. Let's just say we had some real family togetherness. In fact, everyone was so happy to see lights on today that they went to seperate corners for awhile, LOL!
It has been a good weekend despite the power issues. Samuel woke up today full of fire and ran Kaysha and Daniel all over the house. Then he proceeded to attempt to eat us out of house and home running down the list of things he thinks he wants to eat. Of course, about half of them we don't have on hand and that is good for a big fit. He ate a lot today, which was good because he took his nap in the hammock today and I could not get to his tube to hook him up for lunch. He sure has spent a lot of time in the hammock these days! He seems to enjoy the extra attention we all give him when he climbs in and asks to have a push. I continue to think that the hammock is one of the best purchases I made for him as a baby. You just cannot put a price on that kind of comfort. We would occasionally put him in it at the hospital and the nurses would come in and look at the empty bed and try to figure out where he was. Everyone there thought it was cool too.
Well, if I did not know his counts were down, I would have never believed it after this weekend. He has just been a happy happy man other than the food fits! I was thinking we seem to be under God's cover of grace and mercy right now and I like it! I pray with him every night and tell him he is healed in the name of Jesus and he repeats it. Hearing the message that his counts were low put butterflies in my stomach but as the weekend wore on, I have felt nothing but peace and joy knowing that we have the armour of God's protection over us. Thank you, Lord!
I got a lovely box of gifts from Erin C. and a note that said A part reads, "I had a dream about you last night, your whole family was surrounded by people looking out for you. You are safe and protcted!" Does anyone else have chills? I have had that feeling all weekend but it did not click through until I read this. Thank you, Erin, for your words of wisdom, taking the time to write them and of course the gifts! They will be enjoyed! God bless you and much love to you!
Also, special thanks to some special prayer warriors, the members of Grace Chapel and especially Rev. Louise. W. and Stephanie! We thank you so much for caring for us and checking in on us. Thank you for sowing into our lives. I hope we can meet up again sometime soon! I will never forget you both coming to visit us and praying over Samuel. Louise, you remind me of Delma and though we have only met once, you have a special place in my heart. Thank you, may God bless you and your church. Our love to you all!
Tomorrow is the clinic day and of course we cannot wait to see Samuel's counts. We also make the final decision on Vincristine and I am trying to get a clear answer as to what we should do. I still feel okay about it but usually the morning of, I get a better feel. I have to believe his counts have come up considerably today. Thank you to all who prayed us through the weekend! Much love to you tonight.
Update 12/10/04
Prayers needed!
First off, Samuel is feeling great and just a ball of fire! you would never know his counts are low. Our labs look like this.
WBC 1k
ANC 320
HCT 28.5
PLT 216K
Samuel will not be needing a transfusion in the near future which is great news, HOWEVER, as suspected, his WBC and ANC are significantly low now. An ANC below 500 is considered severe neutropenia, meaning his body will not be able to fight infection at this point. His counts are suspected to fall over the weekend. Please pray for God to keep Samuel well and free of fever and infection and that his ANC will go up. Any fever over 101F now will require a trip into the hospital and at least a 48 hour stay. If the weekend goes well, we do not have to go back to the clinic until Tuesday. If Samuel gets sick over the weekend, we will be in the ER.
I am busy pumping him milk and making him bone marrow soup and other "well cooked" foods because his body won't even be able to fight off normal friendly bacteria in raw foods.
Thanks as always for your prayers and wonderful support!
Special thanks to Dot in Enumclaw for the wonderful gift we received today, absolute perfect timing.
Have a safe and wonderful weekend..... With our love!
Update 12/7/04
Happy Birthday, Mom! Sorry your day sucked.
Our day went well. Another baffling day for the Onc though. Samuel's counts look really good today. WBC is 2900, ANC is great, 1590, HCT is 33.9 (was 34 last week, can't help but grin over this) and his PLT are 360K. The most surprising thing is his HCT at 33.9. The Onc did not see the labes before we left but I know he will be pondering this tonight. We have made the extra effort to get greens into Samuel's diet this week to help prevent the fall of the HCT and it looks like it is doing the job. Samuel is still feeling great, bouncing off the couches. Ripped the "air bag" off tonight playing.
The Onc was mystified that Samuel is looking and feeling so well. In fact, he remarked that Samuel still has his hair and promised me that they really ARE giving him chemo. Isn't that funny! Samuel is still only 14kg which is going to annoy me since he has been eating really well this week but Mark pointed out all the really thin kids in the clinic and how awful they looked, vs. how good Samuel looks. So I guess I should be happy he is not losing weight anyway. The next three days are ARA-C pushes and then they will check his labs on Friday. With a WBC at 2900, I wonder how much more it will fall. This is kind of scary because the lowest we saw on paper with this round has been 2600. It may have been lower but we don't know. His ANC is the main thing to watch and it is normal for today. But as I saw a few weeks back, it can drop in a day significantly.
The Onc brought up the Vincristine today. I was going to ignore it but he seems to have thought it out a lot and the plan is that Samuel will get a half dose on next Tuesday seperate from the Peg Asp shot this time to rule out reactions. Looking back, we all feel there were problems with all these and then factoring in his butt issue which is a non-issue now, we shall see. They don't feel it is even useful to give less than a half dose so if he does not tolerate that, then he will get no more. We need lots of prayer for the weekend and into next week. Going with my gut, I feel okay about the Onc's proposal and like it will be okay. Usually I get a better feeling the day of but alarms are not going off in my head as of yet. I can say that I will not be happy if we agree to this and Samuel suffers like the last time. It is hard to have a boy who trusts you so completely, and then fail him miserably. Please pray that God protect his body this week and especially going into next. We don't want his counts to fall to the point of risk of serious infection. My prayers are that the chemo kill any cancer cells that may be left and leave the good cells alone. Based on the labs for today, that specific prayer is working well!
Our day started at 4:30am with Samuel having a small blockage from his nasty chip eating habit. How do you convince a 2.5 year old that he has to chew the food until is is puree? Bye bye to the chips. And of course, his bag was half off by 5am so he had an early bath and it has just been a long day fur us. I am just kind of waiting for everyone to go to bed so I can do the same. Much love and thanks to all!
Update 12/6/04
Well, the tree is up! Kaysha and Daniel were really excited to do this this year. This is the first time they asked about the tree ahead of time and the earliest we have ever got it up. We used to go cut a fresh tree each year but got tired of the wood stove killing them before Christmas. Kaysha and Daniel did most of the tree ornaments while I put on the lights and tinsel. I put on the "special" ornaments and "Delma" as well. The "special" ornaments are the ones I made while prego with Samuel. They get more special every year. I love to look at them. Kaysha wants to make some this year so I may get some more stuff to do them for the rest of the season. "Delma" is the angel on the top. She is an antique now, made of straws and glitter and paper. She may need to retire soon but she was Delma's so I like to get this one out as well. Samuel enjoyed the Elmo light covers and the apples and pears. I actually found some glass rubber ducky ornaments on ebay that I bid on and lost.....which is irritating because Samuel would have enjoyed them. We did not drag much more decor out though I have flowers and figures, etc. Just don't want the hassle of putting it all away later. Kaysha got out everyone's stockings and tried to figure out where Anna's was. Well, she wasn't born last Christmas so she does not have one. I am sure my mom will take care of that.
Samuel has had a nice week, only feeling sad occasionally but mostly running around dragging stuff out and making lots of messes. In fact, before we could do the tree, he and A.D. got out two boxes of cereal and dumped it all over the room. I was using the blender making his food so did not hear him in the cupboard. They were both quite pleased with themselves.
I have spent some time trying to slow down a little, read a book, watched a movie with Kaysha, watched TV alone (wow), and even made myself a top and tie dyed it and that just turned out COOL! I am going to wear it tomorrow and see if anyone notices it at the clinic. This is the first clothes I have made, how cool is that? I keep loving all the pouches and finding them hard to sell, now I have a new hobby it seems. I am reading a book on diet following the Bible's guidelines which is interesting. I don't read much other than online because reading requires a magnifying glass so it not all that pleasant and enjoyable for me. So the content must be worthwhile. I am trying to find ways to change everyone's diet because I know Samuel won't have the tube forever and at some point he will need to make better choices than chips and crackers. Experimenting, Trying to figure out why eating God's way is so darn expensive! You would think God would make His food cheap so everyone could enjoy it. But I guess since most people don't even know what God's diet is, the demand is not really there yet. So I am doing a little cooking, trying to plan some things, trying to get my mind back in line with today. Trying to figure out what makes me happy or gives me enjoyment since that seems to be lacking in my personal life right now. This reminds me of when someone dies suddenly, you finally get over the initial shock but your life is never the same again. Everything is out of whack and you have to retune things. Things that worked before now do not. Things that were okay now aren't. Things you hated are okay now and things you loved, you hate. Kind of like my throwing away the clothes thing, out with the old, in with the new. Just trying to figure out what "new" I want. I think I have pretty much taken care of the old crap. Just longing for some fun again I guess.
I spent some time last night skimming the archives of this journal and am glad I doccumented things so well because I have already forgotten many GOOD things. Funny how you dwell on the bad. I was reading the journal entry where Samuel started talking for the first time shortly after we came home. The post before that, I ended wishing he would wake up and say hi, rather than cry. And then noting how funny it was to hear him say "hi momma" every time I passed by. It is amazing how far we have come. His newest thing to say is "what color is that?" and he will ask you this 50 times a day. He knows all the colors, just checks to see if YOU do. His vocabulary continues to explode. Mark and I were talking about my favorite topic, moving away. Course, I don't know where we will go and as Mark says, it is not like we can just up and leave the cancer with the house. That was a funny thought though, I recall my Mom telling me that when you sell a house you have to disclose things like if someone died there, if a crime was commited there, etc. Well, we will just leave the cancer here and move on. Nice dream, I know. Unfortunately we cannot move right now but the plan has always been on the back burner. My sewing room is in the biggest room of the house and we really need that room to be a bedroom. But I have so much stuff that that is not possible. So a house with a detached shop would be good at this point. Thankfully the biz is debt free so if I work, great, if not, it is all waiting for me whenever.
Speaking of sleep, Anna decided to sleep better the past few nights. I woke up one day and actually felt like I had slept a long time. It was about 6 hours! Wow, a new record. Daniel lost his second tooth today so the tooth fairy needs to make an appearance or we will hear about it in the morning. Of course, he is thrilled. Samuel is still eating despite the chemo, which is good. I think he should have put some weight back on. Last Monday he was down to 14kg/30.9lb which is low. He has not been that low since his VA shunt was done the last time in September. Tomorrow is clinic day for us, we visit the Onc and get labs, then poison for four days again. As usual, we cannot wait to see his labs. He looked pale and anemic on Friday, but perked up over the weekend and has color back. Today, he was more moody though so who knows. Last weekend I added fresh raw garlic to his diet because it stimulates the immune system and within 24 hours he went from a "sad man" as he calls it to a jumping off the furniture bouncing off the walls man. I gave him some a few months ago but it bothered his tummy so I stopped. However, as I told Mark, you cannot argue with success, there is a definite improvement to his overall energy level so it kicked something into gear. The only downside of this is he REEKS of garlic. I don't mind, in fact, I think it is hilarious especially when it makes Mark almost gag. I want to test the Onc's senses and see if he notices, LOL! For what it is worth, Samuel does not seem to noitce nor do the other kids.
Some special people to thank....
Karen K, for the book for Samuel. This arrived the day we went to the hospital to stay and was a hit! Thank you, he loves it and knows every animal in it. It is a very cool book!
Laurie, thank you for the DVD, it came today!
Melissa J, your generosity leaves me speechless. Thank you so much. I couldn't believe it when the package arrived!
Hoping and praying for another safe week in travel to Seattle, a quiet week for Samuel and that he continues to feel good. I don't even want to think of next week at this point so I pray that the Onc be wise with the Vincristine at that point. I feel like we are just trying to dodge the bullet at this point. Thanks for all the prayers this week. Much love to you!
Update 12/2/04
It has been a busy week, one that I am glad is almost over.
The big news is that Anna got her first tooth yesterday and the second one today, matching top teeth. Now she will be able to bite along with scratch and pinch. I would like to report that she has been sleeping better but she hasn't. Samuel went in to the hospital for his overnight poisoning Tuesday and she stayed home with Mark. Apparently around 1am she woke up and would be comforted by nothing and spent some time screaming. Not just crying, mind you, but screaming her name...."A.D.....A.D.......A.D........" At the top of her lungs no less. Only my child would be creative enough to scream her own name! Unfortunately, that night was a rough one for the family at home but then it sucked at the hospital as well.
Samuel perked up starting last Sunday. He woke up happy, got out of bed and played all day. he took one good nap and got up again, happy, which was a switch from the previous two weeks where he got up sad and never recovered. We were thrilled to have our boy back. Finally, after 13 days, he got relief. Monday, I spent sewing and cooking for the week. I figured if I made a few things in large batches, they could last the week and we would not have to come home to PB and J or cereal for dinner since no one wants to cook. Monday felt like a get out of jail free card since technically, we were supposed to start treatment again and be inpatient that day. So it was nice to just fiddle around and watch Samuel be a normal 2.5 year old. Watching him that day you would have never known all he has been through. Tuesday, we headed in to Seattle for the Onc visit and admit. I always hate packing, thinking of it and the drive in. The last trip I was smart and packed Samuel and I food for the night in a cooler so I did not have to leave the room. I did the same this time as well. Samuel had started eating table food on Sunday so I packed him some of his favs as well. The last trip, I packed him a huge tub of pasta and he ate nothing so this time I packed only a meals worth.
I had a long talk with the Onc about the previous two weeks. Before leaving, I talked with the ND over the phone about the previous weeks and relayed his info to the Onc. I asked the Onc how long he typically sees side effects from Vincristine as far as cramps or pain go and he said half a day. We had to wait seven for this to go away. We talked a lot about the Vin and Peg Asp given together and I told him they needed to be seperate from now on and if that required a seperate drive in, so be it. He was fine with this. We talked about Samuel's poor butt and the mucus build-up and how much of the pain could have been from that vs Vincristine, etc. But the fact remains, he stopped peeing for almost 24 hours, gained 2 pounds in water retention, and did not have good bowel movement for 5 days following, could not tolerate anything but clears or breastmilk for 7 days, obviously this was not all the butt thing. He agreed and said it would be foolish to give the same dose again. What dose he will think of, we don't know. He wants to talk about it in two weeks when it is due. The ND said the cramping, etc. was a type of allergic reaction because the Vin is a botanical and Oncs don't know much about herbs, etc. I relayed this to the Onc who told me his thoughts of allergies are the usual, redness, itch, throat closing, etc. So that is all up in the air for now. He told me that Samuel did remarkably well in the first two weeks of Consolidation when most kids have lots of issues and then had major problems in the second two weeks when most kids do great. But Samuel is NOT a normal kid, we all know that. There is no clear cut answer. What I know is that if you are allergic to something, the reaction gets worse every time you take the medicine. And they don't want to rule it out because it is all over the protocol. Two more doses this round, five the next, three the next and once a month for the maintenance phase which is 2.5 years or so. Sounds lovely, doesn't it. Nothing really came out of the conversation and so it would seem worthless other than that I know the Onc is thinking about it and he knows that I am thinking about it as well. And I have to say that I do like this Onc, I do think he cares about Samuel. I don't think of him with the connotation that he is a witch doctor chomping at the bit to try his new concoction on Samuel. This is how I think of our previous Onc.
On to more interesting things to note.....
Samuel's counts had recovered nicely. Not as well as I had hoped but he had not had any breastmilk for three days before either. His WBC was 5400, his HCT was 34, his ANC was 2550, and his HGB was 11. The HGB was just slightly below normal. PLT were 650K. The Onc commented that he could not believe Samuel's counts did not bottom out and felt that most children who stay on task in treatment would have had marrow that was just barely recovering from cancer and chemo going into this and would not have been as strong as Samuel's having had a break and time to get strong. Personally, I think his WBC and ANC did not bottom out because of my milk but I did not mention it. I could be wrong, but we will see going into this month because his counts are starting out lower this time. No need to lay out my hand just yet to the Onc, keep him on his toes for now. I asked him if he thought that Samuel's counts would bottom out with this phase because they were starting out lower and he said not necessarily. I also asked him if he thought Samuel would do well with this phase like the first time, or if he would be more sensitive and not have a easy of a time...at least with this first two weeks. Again, he said kids usually did about the same the first time as the second, but has nothing to compare to. I think of Mark's Mom when she had to go through chemo. The first round was nothing...you would have never known she was getting it. The second almost killed her. Same chemo, just two different times. Chemo stays in your body a long time so the effects are cumulative. So far so good. Samuel is still a happy little boy today. We have one more dose of ARA-C tomorrow and then three days off. Then next week, four days in a row of ARA-C again. We will see the Onc Tuesday and get his counts again. The Onc did tell me that he felt like Samuel's counts will crash and he WILL get an infection, it is just a matter of when. When he says things like that, I always think he forgets the God factor and has no clue how many pray for Samuel, etc. I know he thinks Samuel's recovery is incredible. Mark and I talked and decided he is just a realist and does not like to build things up when complications are a given. But I think we have had enough of those and I don't even want to consider it. So maybe I am a dreamer. Honestly, I am tired of all the drama. It is hard to think of normal right now.
Our overnight stay sucked. We were put in a 4 person room and ended up with another person staying with us. A boy Samuel's age getting the same poison. He cried most of the night, for NO reason that I could see. HIs Dad came in for a little while and the Mom left with a sister. I assumed the Dad was staying and the boy actually stopped whining and bawling while his Dad was there. This was nice. But the Mom and sister came back and they were loud and obnoxious until about 11pm when I finally asked the nurse when they were leaving since only one person could stay. I don't know if they were new or what! Their boy was in his last month of intense chemo yet they acted like they had never done any of this before. Mark and I talked about it a lot....it is just a DUMB idea to put cancer kids in the same room. Samuel went to bed around 10pm and had we been alone, I would have too. But instead, I got to listen to the other boy bawl, and only for his mom, not when a nurse came in or anything....until 1am. Samuel slept through this because he is used to lots of noise. Good for him, bad for me. I was thankful to have the laptop so I could surf the net at least. Around 4am our nurse came if to do vitals and then Samuel apparently had had enough sleep and was "up". So we watched TV and played with toys until 7am. The other people were apparently so tired that they did not wake up for all this. Samuel got his chemo crap without incident and the NP we had the last time visited us again and asked all about Samuel's butt explosion. She asked me about his "fluid build-up" and I asked here which one she wanted to know about? The head, the abdomen, the all over body one, what? I guess she did not know about all those. While I am whining, the bed sucked. It was a well used cot which had a nice pit in the middle of it. If you layed on your back, it was like a recliner. If you layed on your stomach, you arched your back in a position I knew I would regret the next day. Would have been okay if you were a prego, you could have fit your tummy in it nicely and been comfy. It pretty much sucked. But the good thing that came out of it was how proud I was of Samuel. He was so good the whole time. He tried to talk to the other boy, but his mom was antisocial and pulled the curtain around their bed. He was happy and only cried when the attending doc came in and woke him up in the morning. I was able to leave the room to warm up our food and go to the bathroom since you are not allowed to pee in the patient bathroom. STUPID!!!!!!!!!!! There is one bathroom for parents on the whole 40 bed unit. So it is always busy. I told him I would be right back and I usually can tell if I can get to the door without him crying he will be okay. He did great. I came back one time and he said, "Oh, there ya' are, Mama." SO cute! I guess he is a seasoned pro at the hospital now. Sad, isn't it. But I was proud to be his mom even more that day than usual because he handled himself so well! Oh, the other good news is that the next scheduled stay will not occur until April of next year or so assuming we stay on target. That is GREAT news to us right now. One day at a time, right? Looking back, I don't know how we stayed sane while Samuel was in the hospital for three months. I will say that Mary Bridge had better bed chairs and we stayed in the Surgical Unit at Childrens with the nice fold out couches. Someone really needs to invest in the Onc unit where a lot of people LIVE for long periods of time. Our morning nurse asked if we were going HOME home, or just to Ronald McD house. I guess they are not used to people going home. Honestly, I think the only way I stayed sane was because we had great nurses 90% of the time. The nurse we had at Childrens in the morning must have had lots of little babies because she sang everything she said or repeated it in baby talk several times. Let's just say I was glad to get out because that would have driven me nuts.
We came home and there is always a detox day for me. Clean up, wash everything. Blow off steam which we both had. Mark had a rough night with Anna and of course our sleepless night. I got both kids to bed and took an hour nap. I woke up feeling better than when I went to bed which is saying something because usually when I nap midday, I feel like CRAP when I get up. I put Samuel to bed for the night and marveled at how cute he looked in his OWN bed!
We gave him a haircut over the weekend. The first one since coming hom. He now looks like a old man in the back. While his hair is back, it is thin, accentuated by short hair. All of his scars show really well again too. But he is still a QT!
Special thanks to my dear friend Carrie and her church for the gift this week! Thank you so much for thinking of us and being so generous. That helps a lot as wel head into Christmas.
A lot of people and churches locally have asked how they can help us specificly right now so I wanted to take a moment to brainstorm ideas of thing that would be most useful right now. There have been several food donations dropped off either here or Mark's parents or the Jump Start Espresso Stand and we appreciate these very much! However, in light of these, we have received so many non-perishable food items that we can no longer store them so we have been re-donating them. Things that would be helpful right now gift cards to food stores such as Fred Meyer and QFC. Samuel's diet consists of organic and whole foods which can be purchased here. I think the other store we frequent does not offer gift cards. Someone HAS to go to the store every few days and these have been WONDERFUL and very helpful gifts. Both of these stores also carry the 7th Generation Diapers which we buy weekly so gift cards here are truly invaluable. The diapers are also an ongoing need. We also shop at Safeway and Albertsons on occasion and it is nice to get already prepared food here on the way home from Seattle if necessary. There is a Walmart close by and we purchase clothing as needed there for the most part since we cannot get anywhere else. Gas is a huge expense right now. We fill up the tank every other day which is about $40.00 a fill up. Gas cards would be wonderful useful gifts, Texaco, Chevron, ARCO, Shell are closeby. Safeway and Albertsons also have gas stations and I think their gift cards might work there...... We are good on phone cards. Obviously cash donations are wonderful because they can be used everywhere. A lot of the supplements we purchase for Samuel are special orders placed online and this is essentially why I continue to work, so I can buy these things.
I would love it if everyone reading would go out and buy a new toy to donate to their local Children's Hospital for the holidays in Samuel's honor. Take them in unwrapped. If you are local, take them to Mary Bridge in Tacoma and ask to give them to Mary or Tammy (social workers) who will find them someone who will love them. Even the nurses can do this especially in a unit like Oncology where they get to know the kids. I remember at MB walking by the nurses desk and hearing them say, "Ducks? Of that has to be for Samuel." Someone had donated a quilt with ducks all over it. in Tacoma they were really good about getting stuff to the kids. In Seattle, they don't seem to give stuff out as much for some reason. Maybe they don't get as many donations or don't recognize the need for the kids to have something to do that is "new" when they are there long periods of time. We are going to get some things together as well. I don't know what the deal is with Seattle, but there were always very cool things donated to MB and the Social Workers made sure people who needed them got them because they actually took the time to get to know you, unlike in Seattle. Things like phone cards, food gift cards, gas cards are also much appreciated by those in the hospital. I have to find time to get some things sent to the special kids listed near the top of the page!
Okay, that is all I can think of for now, basically, the basics, food, gas, diapers. Anything else is just a luxury I don't have time for. Mark asked me what I want for Christmas and I cannot think of a tangible item. I can think of things that are unhelpful to him such as Samuel not ever having cancer, normalcy, no child suffering disease, sleep on a regular basis, no child dying, no more pain, suffering, crying, families lives turned upside down, spare time to just sit, spare time to do all the things that rumble around my head, sanity, meeting the friends I feel so close to who unfortunately are not here and there are SO many of them, moving away to a place where Samuel is well, never thinking of the possibility of Samuel not making it.....you get the idea.
I cannot complain, right now life is good! Samuel is doing well. Some of the kids I check on are not faring well this week. If you have an extra moment, please pray for Rachel and her family as they are making painful decisions, Taylor needs a bone marrow transplant and has no donor, please consider being a bone marrow donor today. Eleanor's Leukemia is not in remission and they are trying to prepare her for transplant. Maddie was able to go home but has just gone back to the ER tonight with a fever. They are planning to check her bone marrow for relapse tomorrow. These innocent children need special prayers.
My mom was telling me about some friends who had no concept of "real life." Playing games all day, sitting mindlessly on the internet dating, etc....It makes me mad to think of all the people who could be making a difference in the world doing something to help someone else but have no concept of life outside themselves.
I hope to put up our tree this weekend. Wanted to do it last weekend but time got away as it always does. There is always something else to do and when you child is finally themselves again, you just want to sit and enjoy it. When you see them WANT to get out of bed and play, you just want to watch, follow them around, savor each moment, memorize it, and lock it up in your heart because you never know what the next day will bring...I don't want to think it, I don't want to write it. Call it all good in the Name us Jesus, Amen.
With love!
Update 11/26/04
Hope everyone had a lovely Thanksgiving. Ours got off to a rough start thanks to Anna deciding to stay up all night and I mean ALL night. Kristina sent me an IM to say she got nine hours of sleep that night and I think we got 9 minutes. I called her up and have had her words ringing around my head for the last two days....Anna is bringing us down, she is not going along with the program. She has to get in line and figure out when we sleep. We don't know what her problem was, she was up, rearing to go, playing, yelling and lucky she did not wind up on the front porch. I have threatened all the kids as babies on nights they did not sleep that they were going to be out on the front porch. Daniel was so awful I swore "I" was going to move out. At any rate, a few of you asked if I am sleeping well....I wish. This would be easier to wake up to if I actually slept at night. Getting up once or twice to do normal things like dump an "air bag," change a diaper, etc, are not a big thing, but trying to entertain a baby, forget it. Ugh! I was going to do an update last night but opted to go to bed at 9pm with Anna rather than stay up to have some ME time. We ended up being able to stay in bed today until around 9am though which was nice. I really just wanted to stay in bed all day too.
We had a nice quiet day yesterday, I made our Thanksgiving dinner which was the traditional Sangria Ham since Mark and I don't care for turkey. Did not really feel like Thanksgiving since we stayed home, but was nice nonetheless, other than the no sleep factor. Everyone tried the dinner except Samuel who is currently on a saltine diet again. Anna enjoyed the food though. We were all thankful, of course, to be home!
We left the house once yesterday to go to Mark's parents where A church group had donated lots of food items and a gift card to us. Thank you, that was very kind and timely! Upon returning, I had a phone message from our ND of all people. How nice is that? He was calling to check up on Samuel and wish us a Happy Thanksgiving. He had not heard about Samuel since last weeks misery and wanted me to call the office and give a report. They won't believe it when I do. At any rate, at least one prayer was answered, Samuel has a doc who does care about him. Speaking of doctors, I received our appointment time for next week and the day has been moved to Tuesday for his inpatient stay. Looks like that will happen, his bottom looks much better, is causing no pain. He still draws up his legs in pain though...vincristine. That is my new bad word. As much as I hate to say it, I want to press on in the treatment plan, the sooner we do it, the sooner it is over. So we will go in Tuesday, stay the night, go home Wednesday, and come back Thrusday and Friday for ARA-C. The following week repeat the four days without the inpatient stay. The good thing is this is the second to the last planned inpatient stay. I found a gift for Samuel at Costco that I was planning to save for Christmas but decided I will bring it to the hospital so he has something new to play with in case the push popper kid is still running around. After tonight I will be pumping milk to store for Anna rather than to give to Samuel. I haven't reached my goal of 20oz per day but have gotten up to 12oz so it won't take long to get a days supply for Anna. I would rather be giving it to Samuel, of course...
Samuel still looks anemic to me. I pray that the extra day will give his counts time to recover well. He gets tired very easily and frustrated that he cannot play like Kaysha and Daniel. He has been spending a lot of time in his bed lately. Today he really discovered all the cool blocks on his new quilt. He has a queen size bed and it just lays perfectly across it so each block shows. He was showing me the hands on it, asking about the bugs (ladybugs), and of course everyone admires the fishy block with the ribbons and bows (who made this?) and he was loving the kites and the bees and the block with the big duck foot in the middle of it. Then he pointed out all the colors in the quilt, then all the quack quacks. This is a very special gift. I am trying to make sure it does not get puked on....crossing fingers.....
I spent the day yesterday thinking of and praying for kids who might be inpatient. I thought of how many holidays we were inpatient and how usually 9 times out of 10 the staff sucked on those days. Especially at MB, it seemed like they scraped the bottom of the barrel for PICU staff. I thought of our dear friend Julie, how it must suck to work, but on the other hand, how the patients who were lucky enough to have her as a nurse would have had as good a day as possible because she was there for them. If I were there, I would have been thankful to have her there. We had her Post Op on two occasions and for many days in a row and this is a truly gifted lady with good instincts and knowledge. I thought of all the times at MB where the bad things happened and I would get up at 7am and wonder who our nurse for the day would be. Many many times, Karla walked in. I remember on several occasions hugging her and telling her that if we had to go through a day this bad, it was better for having her by our side. She was with us for the diagnosis of the hydrocephalus, which was mistaken for a stroke and then a CNS relapse. She was with us on our last four days at MB keeping me sane and listening to my thoughts, fears, and becoming as close as a family member. She had some qualities that firmly reminded me of Delma and I could see how God could made a bad horrible situation bearable. We had Patty in the PICU the day Samuel lost his colon and I was so thankful to have her as a post op nurse. We had Abbey for several post ops as well. These ladies took the time to get to know us and love our boy and for that we are eternally grateful. I have successfully broke two more food pumps and was chatting with the person who is sending me new ones today and realized that Patty from MB is her best friend. Small world. I thought much about Patty today and all the specal care she gave Samuel, from giving him a bath EVERY DAY, to changing his bed, EVERY DAY. I say every day because most of the PICU nurses could have cared less if the kids were clean. Samuel went four weeks at a time without a proper bath. When we finally got him into the tub, he lost a whole body's worth of dead skin. She constantly sure he was comfortable and well medicated. She went home many nights feeling bad, apologizing to us for not helping him much when she helped him most of all. Anyone who has any of these nurses is truly blessed. God bless these ladies as I write this, they are jewels!
Some special prayers are needed tonight for a fellow member of a list I joined called ALL Kids.
The little girl, Madie and her mom, Regina, are in the hospital tonight fearing that Madie's leukemia has relapsed. Please pray that this has not happened. Relapse is always haunting our thoughts on some level and devastating if proven. Relapse means more higher dose chemo, radiation if a CNS relapse and even possibly a need for a transplant. Please say a prayer for Madie and her family as you read this.
I received several notes today from ladies sharing not only their own prayes but the fact that their children pray for Samuel daily and call him their "friend." That is so special, touches my heart. I told someone today that the way I believe you get prayers answered is to have all the people praying truly believe that the prayers CAN be answered. Who better to pray for us than our children? Thank you to all the families who have shared Samuel's story with their children. Thanks to the little children who prayed that Samuel would walk and play again. If you were here, he would want to play with you all! He loves kids, tries to befriend all the kids at the clinic, whether they like it or not.
Well, I am off to eat some pumpkin pie, and then ponder that treatmill we need to buy. I can't understand how someone living through the mess we are going through could be this fat! Probably all that late night chocolate, huh! (don't say a word, dear!).
Much love to you tonight!
Update 11/24/04
Finally, a day of relief for Samuel. This is the ninth day after the Vincristine was given and he is almost back to normal. Thank God because I was about to lose what sanity I had left, which was not much.
I did not even bother to update last night because I was so tired and grouchy! I swear I get up every morning to Anna and Samuel both bawling. Anna seems to be in a horrible mood from the moment she gets up, usually early, until she gets a morning nap. She did not want anything yesterday other than to cry. Samuel had a similar day to Monday, still clingy and in pain....total frustration on my part! We did go to Costco but the whole trip went sour due to my bad mood as well as Samuel and Anna's. Upon finally getting them to bed, I sent off a few nothes to a few friends who were unlucky enough to hear about my mood.
I swore I would go to bed early but then Mark came up to ask if I wanted to watch the Amazing Race. I decided this was a good idea. This was one of the shows we enjoyed watching together before Samuel got sick and it was almost like old times. In fact, as Mark said, you could almost forget the crap we went through. The show was hilarious and as good as usual. Our night culminated with a water and ice fight which was perfect for me to work out some frustration while being able to laugh too. We are still giggling about it today. Maybe I will have to go down for a second round. I ended up heading to bed about 10:30 in a lot better mindset. Of course, then Anna decided it was playtime which always seems to happen when I am most tired so she got to go watch TV and we went to bed. About an hour later, she was ready for bed so I brought her back to the hammock. Around 2:30am, I heard an ominous cough/gag from Samuel's room. I got up and ran in just in time to sit him up so he did not throw up all over the pillow. I don't know what made him puke but he did so all over. He had to take a quick bath while Mark freshened his bed. I switched him to mint tea but about an hour into that he woke me to say his tummy hurt so I turned it all off and went back to bed. Somehow I managed to stay in bed until 9am this morning. Mark got up with both of them. And Anna was actually in a decent mood today which was nice. I felt a lot better both physically and mentally.
Samuel has had a great day. Very little fussing, crying and I was able to leave the room he was in and go do something else without him bawling. He played quite a bit today. Oh, it is so nice to see him more like himself again. I got all my projects done today so if you are awaiting a pouch, it will ship Friday.
I got a lot of very kind notes today with Thanksgiving wishes. Lots of people specificly praying for the sick tomorrow, thank you! The endless suffering going on is so unfair. I will be praying for those who are spending Thanksgiving in the hospital tomorrow and the special caregivers who will be there like my friend Julie. Someone will have a good day because they will have Julie as their RN. If Seattle wasn't such a long drive, we would bring you dinner! Please pray for the caregivers who really do care. Let every child in a hospital get their favorite caregiver tomorrow. Some of these people became my friends while there and I regard them very dearly now. They know what we went through because they were a witness. There will always be a special place in my heart for them. So many of them went above and beyond the call for us. Thanks to all of our caregivers who loved Samuel and continue to check up on him. Love and thanks to our friends both at Children's and Mary Bridge.
I am so thankful for you friends, both known and unknown, who support us in so many ways. Thanks to those who continue to hang in here with us, on the hard days, the good days and the days where I am silent. You are never far away in spirit. That means so much to us. Special thanks to Jami X for your hard work to help our family.
My dear friends, Kristina and Monika, you are never far from my heart. I am so thankful for you both. Know that, even though we talk a lot less these days. I could not do this without you both. Someone has to listen to me rant and rave right???
Enjoy the day with your family tomorrow! We will be doing the same. Much love!
Update 11/22/04
Finally, a little relief! Samuel is better today, still has a ways to go, but not screaming every other minute. I think he can make it 10-20 minutes now. He is tolerating his food better today and playing quite a bit more, only stopping when the pain hits.
We went to see the Onc today. I called ahead of time to be sure they had enough time to schedule with a GI. I wondered if he would bother to do so, but he actually called them and supposedly arranged a consult. I have to give him credit for knowing without being told that is Samuel's butt is not healed next week, we are not proceeding with chemo until it is. Samuel's weight is still holding at 14.3kg so in a weeks time he lost 2.2 pounds. The Onc was not very happy about that either or the fact that he is just now starting to get his formula again. While it is frustrating for me to see him lose this much weight after working so hard to put it on him, it does drive the point home with the Onc. Samuel should have gotten the Vincristine again today per the protocol. Can you imagine what that would have done? Mark and I have had countless conversations about what to do about it. The Vincristine is a major part of the treatment protocol and we know that while the Onc will try to be fair, he will not dismiss it completely. I have also since found doccumentation that giving the Vincristine with the Peg Asp can increase toxicity of both poisons. So that could have been a major contributor to last week as well. When I asked the Onc, I was told they give the two together all the time. So I don't know. No one even wants to go there right now, but of course, my mind is never at rest.
Samuel's counts were reflective of last week. His WBC was a bit higher at 4100. I hoped it would be higher but with his butt in the condition that it is, he is using the WBC's up. His ANC was 1300 so pretty good. His PLT are an ASTOUNDING 756K! Guess they recovered fast and are back to overproducing. His HCT is up to 26.2 so he is still a bit anemic. Please continue to pray his counts recover, as well as his poor butt.
After our short Onc visit, we went down to GI Clinic. Apparently though our Onc called, no doc was in the clinic that day so they had to find the inpatient doc. She finally arrived and was not enthused about seeing Samuel. We were asked several times why we were there and when we told them what had happened to Samuel last week, no one believed it. And apparently the inpatient doc was too busy to take a moment to look so at first she told us flat out that we needed to go to the surgery clinic, not GI. I asked her why she could not even look just to see if the anatomy was okay, and I was getting pissed by then at the laziness of this person especially when they were specificly ASKED by another doc to do this. Finally after getting more of the typhlitis and no colon story, I guess she was interested enough to check it out. Mark took Samuel back which was just as well because by then, I was not going to be too nice. After looking, she thought it looked like it would heal well with no intervention. She was able to see scar tissue and an adhesion. She left us with instructions to see a Rectal Specialist at our convenience. Now there is a fine occupation for you! They might want to look up there before he is hooked back up. At any rate, we have not been impressed at all with any of the GI docs there so decided we may get a consult with our old GI doc from MB who acutally HELPED us way back when. I will tell you this, Seattle GI SUCK! MB has two of the best IMO and neither of them were "too busy" to help our boy. Not only that, when you ran into them in a place other than your child's room, they were courteous and would always converse, not pretend you were a nothing.
A bunch of you have asked how "I" am. Back into anger mode which I seem to function best in. The days are long and the nights are short here. There is never enough time in the day. It seems that between Samuel and Anna, someone is always crying. I would like to sleep for about a week, or just do nothing for a few days. I have in my head countless things I would like to accomplish, call a friend, answer an e-mail, read something helpful to Samuel, check on other's kids, sit and take a break, make a grocery list for Mark, put away the clothes, make Samuel's food, pump milk for Samuel, get everyone fed, clean, schooled, etc. Trying to savor every day. I sat down and actually watched a show on TV for the first time in months that was not a kids show. Mark came in and asked me what I was doing...."Watching TV, weird, huh?" Trying to find some time to just spend with him alone is tough. It is already getting late, I am beat tired and nothing really matters except that all are sleeping and for once, Samuel is not waking up every few minutes and only needed help from Benedril to go to sleep. Last night he had Morphine, Ativan and Benedril and he still had a rough time falling asleep. I hope he is even more improved tomorrow. His counts are now trending up and I really want to go somewhere like Fred Meyer or Costco so maybe we can do that this week. I am sure he will enjoy seeing something other than home of the hospital, I know I will.
We received a truly gracious gift from the ladies of the BBB today. I cannot say how moved and thankful we are that you ladies continue to help out in such huge ways! This could not have come at a better time, on a better day! We are so humbled that you continue to care for us and reach out in support. I recognize most of the names, thank you to Brianna S, Carolee, Cindy, Jen G, Juliet, Lisa B., Melanie, Pam C, and Teva! We about fell over when we saw the amount, you ladies are so special! Please know that you have helped in ways I can't even express. Much love, and many of God's blessings to you.
The card these ladies sent has a rubber ducky on it with a Santa hat and a Candy Cane. Made me think maybe we need to do a ducky Christmas tree for Samuel this year. Course, then he would just take them off and play with them. I would find them all over the place. I am sure A.D. will do enough of that for everyone. One year we had to decorate the tree THREE times because certain kids played with the tree and tipped it over! Mark finally tied it to the ceiling.
We don't have any plans for the week other than to try enjoy it. After last week, any improvement will be an enjoyment. I have some projects to finish up and hope to get these done tomorrow or the next day. I don't know what we will eat on Thanksgiving because I don't have time to cook as things are now. No one here wants to cook anyway, it is just another chore. I would rather sleep. We will be thankful to just be home, but other than that, it does not feel like a holiday when you don't do things like "normal" people do. If Samuel's butt is healed up next week, then his chemo will start again on Monday with the same as last month. The first day is inpatient and then we return to the clinic for daily ARA-C for four days, two weeks in a row. So I try not to think of that too much, an extra week break would be nice, but on the other hand, I would like Samuel to not be in pain. We are at another milestone, we have made it through the first month of Consolidation. This would actually be week four of nine. Samuel is sitll home with us. We al sleep in our own beds, we have a lot to be thankful for. None of it thrills me and my attitude has not changed in regard to chemo/poison. We are doing what we can do to get by. We need to get through next month, then there will be eight weeks of less severe chemo where the fear of his counts dropping to zero will not be as much of a threat. As it is now, if he goes into next week with a WBC of 4-5K then the chemo will drop it from there and chances are he will bottom out, that scares me. I would really like to see these counts recover to the 8's - 9's. The only criteria for continuing chemo is that his PLT be over 75K and his ANC over 750. Neither would stop him from going on. If we stay on target, we would have Christmas week off similar to this week which would be OH SO nice! I remember telling the staff at MB that if I was there at Christmas, I was not going to be happy. One of them told us that it is really fun there at Christmas....huh? I don't care what they do, give, whatever, it would not be fun to live there at Christmas. It was not fun on non-holidays. My heart aches and breaks thinking of all those who will be spending the holidays at the hospital. So going into the holidays for us is about survival, and being able to be home as much as possible, it is about easing Samuel's pain and side effects from chemo. Worry is always there. In the last week, I have done vitals on Samuel several times a day and night. We must have checked his temp 20 times a day for a few days there, and I listened to his heart, lungs and bowels so many times that he is finally used to a stethescope. Something most people would never think they would ever have to do, but better me than a stranger. I cannot go to bed at night anymore without knowing he does not have a fever, his heart is beating at a normal rate, his lungs are clear, and his bowels are flowing.
Enjoy the little things this week, the quiet moments, the loud moments, being home, going somewhere, doing normal things, life with healthy kids if you are lucky enough to have them. Pray for the sick. Mark keeps asking what I want for Christmas....what I want is for the vicious cycle of illness to end for all children, and for that matter adults. This is a cruel disease with an even more cruel "cure."
I am agani, exhausted so will end...Much much love to you who continue to write, touch our hearts, my friends/customers who think of us and remind us that they are with us in spirit, thank you! It is a comfort just knowing we are not alone in this.
Update 11/21/04
No fevers last night, his WBC must be on the way up now. His poor butt was a little better but he still does not want to sit on it. He has been sad all day, only a few happy moments until the next pain set in. His stomach is still bothering him as well. I made him some of his usual formula concoction for the first time since last Monday but his stomach still could not take it. Everytime I hear him say his tummy hurts I think of his gut rotting all over again and feel sick and mad at the same time. I pray this ends soon. He needs some relief. He is back in cloth diapers to help his poor tushie get well. Paper sucks.
Anna has spent the day being a screamer. Not happy about anything. Makes for a long frustrating day when no one can console her, or Samuel but me. She doesn't have any teeth yet so they must be on the way. Hopefully tomorrow will be a better day for both of them.
It will be an early trip to Seattle for us so I will cut this short as it is already 10:30pm. The Onc just wants to see his labs and we are planning to get a consult with a GI so it could be a longer trip depending on how busy they are.
Samuel is having a hard time falling asleep tonight. He is still up crying out so I will go back again and see if I can get him to sleep. He hurts so much, it is so frustrating to not be able to do much but hold or drug him. Please keep him in your special prayers as always. Thanks and love to you all!
Update 11/20/04
We are seven months past the diagnosis of Samuel's Leukemia and he is still alive, PTL.
We were able to stay home today, ALL day. While that was nice, Samuel had a pretty much crappy day. The mucus coming out of his butt is acidy and burns him constantly. I say constantly as it is draining all the time. Last night he did manage to sleep pretty well. I heard him crying at about 2:30am and went in to find Mark taking his temp. He was about 101F. I think we are supposed to go to the ER at that point but after acessing Samuel, we decided to give him some Ibuprofen and wait it out. Usually with a high fever, he is restless...like he is waiting on me to do something. He wants to watch a show or be distracted. I can always tell a fever right away from just touch, but also his extremeties are always freezing. Sometimes when the WBC is low, a fever is all the body has to fight infection. We were not really thrilled finding the fever though. It was annoying because I pretty much knew it would happen. His temp came down quickly and we went back to bed and slept until 8am or so. How lovely!
Samuel did get up and attempt to play today but his butt is sore. He cannot sit on it at all. Upon looking at his anus more, he only has about half an anus and that half is ripped open. The rest healed up into smooth skin it seems. And there is a little piece of a skin tag pulling every time he moves causing more pain. We will insist on GI visit on Monday. This will have to be fixed immediately and allowed to heal without sealing up again. If doing so puts off chemo for the next two weeks, so be it, he cannot get this half healed up and then have his counts fall again. This is a raw open wound. It is almost like the horrible rash at MB in the respect that acidy mucus was coming out then too and everytime he would pass it, he would scream bloody murder. We finally just stood there and wiped it up as it came out so little would touch him and burn. That was so horrible. No amount of morphine would touch that either. Similar to today, the morphine takes the edge off but the shreiking continues. We were using some cream specially made by a GI doc at MB but switched to Virgin Coconut Oil tonight. He seems to like that better. It does not burn and leaves enough of a coating that the mucus doesn't just stick now. What an awful awful thing to happen! We thought we were done with this. I am getting tired of reliving the nightmare in stages. I guess I can at least say we have control now and can do things right. In all this weeks misery, I am so very thankful to still be home. Thankful for all the friends who support us through love, prayers and kind notes and calls.
His temp has remained in the 97-98 range tonight which is higher than his average so there is still something going on. I just got 96.5 before coming up here so that is pretty good considering his last tylenol was at 5pm and it is now after 10pm. Usually tylenol gives little fever relief so I only use it in low fevers and save the IB for the high ones.
Samuel took a three hour nap today, the first long nap since last weekend. He is still complaining that his tummy hurts, air bag hurts and knees hurt. The tummy and knees are the Vincristine but the air bag may be from the package of saltines he ate today. Probably did not chew really well. This is now day six and we are still seeing side effects of the cure. He is tolerating solids through the tube fairly well today but still having cramping off and on. He was feeling better last night then he is today.
Please pray specificly for Samuel's poor butt and that any repair that may need to be made to correct it's shape be made quickly so we can get it healed properly this time. Pray his fever stays gone and no infection come into his body right now. Pray that the toxicity of the chemo be sanctified now so that he will feel better. Our special thanks to you who pray for us.
Special thanks to the Enumclaw Church of the Nazarene for the WONDERFUL gift we received today. We are deeply grateful for your care and concern and desire to help. Our burden is lighter tonight, God bless you all!
Update 11/19/04
Samuel's "labor" ended today at about 1pm. He did not give birth to a baby...only a boy nicknamed Pooper could have this happen....you won't even believe it.
Samuel actually slept pretty well after I put him to bed last night, up until I went to bed, of course. Doesn't it always work that way? Funny, I was never really able to sleep anyway because I worried about him all night when I wasn't with him. I ended up giving him more morphine at midnight. We were using twice the recommended dose by this time. I rocked him in the rocker until about 1am and back to bed he went. He must have made it until about 3:30am because I remember looking at the clock then. I tried to get him back to bed but no luck. Upon looking at him, I thought he looked like he had a fever. A quick check showed 98.6F but since he is usually 95-96, I gave him some Ibuprofen. I have seen fevers for months and know what they look like even without the numbers adding up. I again rocked him in the chair until about 5am before getting him back to bed. He continued the labor cycle all night. Cramped up, ended up pushing like a woman in labor, no luck. He ended up getting up at 7am and Mark got up with him while A.D. and I slept until 8am. As soon as I went into the living room, he started fussing and crying and getting uncomfortable. It almost seemed to be for my benefit because before I walked in, he was doing well, only cramping up every 20 minutes or so. I picked him up to take him to his room and hook him up to his feeds again which were still running clears through, and he went crazy in pain. He did not want to be held and cried for his bed. Similar to Mary Bridge behavior. So I was pissed off all over again. I just couldn't believe it. I spent the majority of the morning in his room with him comforting him. He flung himself all over the bed trying to get relief. Again, like MB, he just kept changing position and nothing ever lasted long for comfort. We went back and forth to the chair but it was obvious that he did not want to be held upright in a sitting position. I tried to run some food through his tube rather than clears because I assume he has to be getting hungry and I don't even get to 7cc's before he is coming undone in pain. He did manage to take a short nap today, about an hour or so.
Mark made us brunch and we ate and decided that he should go to the store to get a few things for the weekend, etc while A.D. was still in bed. Samuel had been laying on the couch trying to relax while we ate but having no such luck. Every five seconds it seemed like he called me. Mark gave him a large dose of Ativan to see if that might make a difference and relax the spasms. Halfway through lunch, he was screaming and I came to check on him and found him to be trying to crawl off the couch. I asked him if he wanted to sit in a different chair. He agreed so I moved him into a more upright position. He fussed for a few minutes and then it seemed the Ativan kicked in. Monika called about this time and we chatted about the fact that he was not any better, in some ways I thought he was worse, Mark thought he was better, usuall stuff. Kaysha came in and he actually acknowledged her and talked for the first time since Monday. I went to talk to him still visiting with Monika. I noticed that his breath stunk BAD and remarked that we needed to brush his teeth, they smelled like he ate poop. I reached down to check his "air bag" for contents and his diaper for wetness and got an even more foul odor. At first I thought his bag broke, but it was fine. Then I felt his diaper and realized that he was in a puddle. (his water broke?) Still talking to Monika I picked him up out of the chair and put him down on the floor, opened the diaper, he was screaming at this point and found it to be completely soiled and tinged with blood. His anus was red, swollen and rashy looking and his skin on his butt cheeks was strange looking. He was wet and sticky and the smell was something like rotten eggs, rotten milk and poop. Nice mixture. Only thing is, he should not have anything come out of that end. So I was freaking out by this time and hung up with Monika and took him straight to the tub. I picked him up and his butt leaked all over and it looked so much like pee that I was glad that Kaysha was there to see which end it really came from.
Interestingly enough, he was happy, relieved and wanting to play. No more contractions, no more labor, done. I called Mark on the cell to see where he was and saved the diaper for him. I dumped a lot of aloe in the tub with Samuel. He was busily trying to swim by this time. Mark arrived and agreed that we needed to call the hospital. I called Oncology once again and talked to yet a different charge nurse who told us to come asap. I told her to have our Onc get a GI doc there to consult since he has no clue about these things. I tried to call the Ostomy nurse again but no luck in getting her We figured this was not good and I packed a bag, Mark called his Mom to come get Kaysha and Daniel. Seemed like we would be staying. I went to get Samuel out of the tub to get him ready and noticed he was shivering. I checked the water and it was hot. Fever was back.
t seemed to take forever to get out the door but we hit the road and arrived in Seattle around 3pm. The whole way we talked about what could have happened. Samuel slept peacefully for the first time since Monday the entire way. While at MB, before Samuel lost his colon, he had the most horrible rash we had ever seen. As Mark says, it looked like someone stuck a red hot poker into Samuel's anus. BAD. My Mom described it to look like a raspberry. It was red, raw, the area was totally misshapen and it took over a month to heal after the ostomy was done. It was so painful for him to poop with this rash that we were almost glad to have the ostomy. He had to have sitz baths a few times a day over this. We were told after the ostomy was done that even though he was not hooked up, the rectum is a mucus membrane and would drain and possibly make some sort of stool once a week or so. Well, after this healed, nothing ever passed through. Just the last time we were admitted, the RN asked if anything comes out of there and we laughed and said no. Mark's theory was that when it healed it closed up the hole, sealed it tight so nothing could pass. I guess this wasn't a problem until Vincristine egged on the bowels to cramp and possibly this stirred something up, or created mucus. Or maybe it has been building up for months since we have seen nothing through it since July and like a Volcano, it erupted. The problem was it had nowhere to go. So in the last few days when I have noticed him cramping and trying to push, he has been trying to get this out. He pushed like a laboring woman straining to get her baby out and sounded like one too. Only the exit was stuck. We hoped it would only be this simple and nothing that required another surgery.
We arrived and were taken back fairly promptly. Samuel just wanted to sleep the entire time. He had a low grade fever as I suspected. He looked flushed and sick to us. The Onc came in bewildered and we mentioned that we needed a helicopter to just fly in daily apparently. I told him that Samuel finally had his baby, and it took a moment for him to remember my analogy of how his pain seemed. He did not contact GI yet but looked at both the diaper and Samuel's poor butt. We had put Rescue Remedy on it before leaving since it looked pretty bad, definitely distended again and raw. Very sore, in fact, he refused to sit on it. I wasn't sure how we would get to Seattle if he could not sit, but he forgot it in his car seat. Mark told our Onc his theory and at first I thought the Onc blew him off a bit but at the end he paid attention. He left to call GI who told him that Mark's theory was most likely what indeed did happen. They did not feel any treatment was necessary at that point. Mark is kicking himself for spending his youth playing instead of using all this brilliance for the greater good, LOL! This would not be the first time he knew more than the doctors. I am sure it won't be the last.
We discussed the low grade temp with the Onc and the fact that Samuel runs so cool, so was it really low grade or more of a concern. He did not feel it was a big deal given his labs from yesterday. So, off we went home. Samuel slept the whole way home. This is the first real sleep he has had in days. We stopped to get some Ibuprofen and his fever came down before we were home. We were both relieved that it was nothing more and once again, we were able to go home.
Once home, he was ready to play, and was himself for the most part. He even ate half a pack of saltines and a few bites of yogert. He has not eaten since Monday by mouth either. He does not want to sit because his butt is very sore after giving birth to a pocket of mucus. How awful to be trying to push that out and finally having the skin break free to release it. We are not even sure when it happened, or if just sitting in that particular chair did it for him but he got immediate relief. It was like waking up from the nightmare. We are so thankful. Everyone is relieved and the weight has lifted off our shoulders but it is still a little annoying as well. Interestingly enough, the stoma seems to be behaving now as well so obviously the release was a good thing. I hope we can all sleep tonight.
Of course now he has a open raw wound which will be very slow to heal due to his low WBC right now. Please pray that his counts recover quickly and this heals up and doesn't get infected or more burned by toxic pee. Pray it heals correctly th
