4/15/06
Last night was a rough one. Things did finally start moving through but not without the bile filled poop first. So his newly healed butt is now broken out and very raw and sore again. I was up with him five times last night. These things always seem to wait for night to get worse. Today, more of the same. He hasn't been trying to eat us out of house and home today, so I hope that means it will improve soon. We obviously have our answer about going to Seattle, and what I have suspected all along is true, he just cannot eat food. Liquid is okay, bot food, no. Looking back it has been this way for two months now. He is NOT constipated. I guess I need to yell this at our appointment to drive the point home. Aloe is my friend right now as it is the one thing that keeps everything going through slowly. Samuel thinks he needs to go to the buitt doctor. It is just really ridiculous to keep going through this and be put off, they just need to figure it out and fix it. I hope our gift to Samuel for his birthday will be that he can eat his cake. He is really excited about his special day!
Another little baby needs your prayer support. HIs name is Donovan. He was diagnosed with leukemia in the first months of life and then relapsed last year. He has had a bone marrow transplant. I am doing a raffle through my store for his family who are in desperate need of prayer and financial support. You can find more info about him through either of the above links. Please pray for them and help out if you can. To date, between the raffle and my own contribution, I have sent them $270.00 but would like it to be so much more. They have been displaced for over half a year and cannot financially support themselves at this time due to complications from transplant. I know all too well how it feels to be on the roller coaster ride of what if's and know how it feels to think you will never go home. Holidays are the hardest times to be away from home and when things drag on and on, people grow weary of helping out. Sad but true. Even family ignores your needs or figures you have it all handled. It is hard to ask for help when you feel like you have already asked so much. There is much joy in giving, in helping out someone I have never met, will never meet, and who has no clue I am even doing it. It feels good to give freely without expecting anything in return. Thank you to those who have already helped out in the raffle. This is a child who has never had a normal life, and deserves a break. I remember those times when we were blessed with a large donation, at a time when we literally had $10 to our names, what a difference that made. Life goes on despite what you are going through, bills need to be paid, clothes ned buying, you need something for entertainment, you need to eat, gas to and fro, it is neverending. Bills on a house you are not even living in, that was the real heartbreaker at times. My kids kept losing their clothes in all the bouncing from house to house they did. We were just very lucky that when we did stay in Seattle, our insurance paid for our hotel. What a miracle!
Tomorrow we will celebrate Easter with Mark's family. The kids will have so much fun. I hope the weather improves as it has been storming here a lot. Just pouring. I will think back to two years ago and the Easter we celebrated then. The one where Samuel was obviously sick, but we did not know it at the time. It might haunt me. But I will be grateful that my family is complete, we are home, and we are together despite the problems we still need to overcome. Samuel will be able to play, hunt eggs and have fun, at home with his family. I will be able to thank God for every day, every miracle, and the gift of Jesus, who went to make a place for us, that we who believe in Him would have everlasting life. That if the day should ever come that I have to prematurely say goodbye to Samuel, I will know where he is, and he will know where I am. Even if we lose on this earth, we still win. Our reward is in Heaven. I pray you feel the presence of God tomorrow.
Enjoy tomorrow, take a moment to look around you at all you have, love and enjoy. Never take one day for granted. Much love.
4/13/06
You'd think after yesterday's update that things would be great today. NOT even close. I allowed him to eat a little bit of food cautiously because we figured if his gut is better, then he can eat again. If he cannot eat, then we KNOW we need to go to Seattle next week. The goal here is, he should be able to put things into his mouth at will, and they should come out the other side. Well, all of a sudden there is nothing but small bunny turds which are few and far between. His tummy tonight looks distended and he is back to grouch galore. BIG sigh......and shaking of my head and thinking some choice cuss words. You would think that at some point, we could get the "happily ever after...." Not today. So we are back again, waiting for poop, the story of our lives. Even the kids are so in tune that they ask if he has pooped yet and if he is okay or not. When we thought we might go inpatient, Kaysha was really upset and frightened for Samuel. It has been awhile since we left home and stayed there and NO ONE wants to think about it, or go back to that life. This is so frustrating, you think you have it worked out, and then you don't. Feels way too familiar. I sign off tonight feeling annoyed, knowing it could be worse, but it could also be a LOT better. Much love.
4/12/06
Today has been a significant improvement. It was pretty obvious this morning with Samuel's attitude being better. He has been a little happy clam all day and especially excited to go to the hospital. Between the aloe and the herbs to heal the gut, I don't know which, but we have poop. Enough to start saying he is catching up which is great. His butt still looks great and he actually let me wipe him really well earlier. He is not on his normal diet yet, still doing clears and letting him eat in moderation, but he is NOT eating non-stop today. That is such a nice thing because it was literally driving me crazy trying to find acceptable things for him to eat. He is currently jumping off the couch and has not had a nap. Seems to have boundless energy and joy. Imagine how good it must feel to finally, after two months feel better!
I am amazed and thrilled by his labs. They were "beautiful" as the RN called to let me know before faxing them over to us. I expected his hematocrit to be funky, but it was fine. All his electrolytes were great, his protein and albumin were in the mid range of normal and his liver and renal functions were also fine. I am thrilled by this because it is a real testimony to the power of homemade chicken stock which has been his diet for the last month almost steadily. Some fruit and veggie juice here and there but basically he has been kept alive and going by the pot on the stove. He doesn't eat meat at all and hasn't been getting his green food for weeks so the protein and albumin being good was wonderfully shocking. No x-ray was done, things are obviously improving. I hope that he just poops a lot and it is all normal again so we will be able to cancel our trip to Seattle next week. I would much rather plan something fun for the two most precious days of this month.
His counts are as follows.
WBC 7400
HCT 33.7
ANC 2800
PLT 335K
We visited with our Onc who wanted me to write down the name of the probiotics we use since it seems to be the magic bullet for keeping the gut in check when it is NOT being poisoned and going haywire. Hopefully it will help someone else. The plan is that we will go in for monthly port maintenance and labs and see him if needed or quarterly, or whatever. I am glad to be getting labs because they just tell me we are on the right track, and if not, I know what I need to do. He also offered himself as a resource for anything, good, bad or otherwise. My mom was glad we will be going in monthly because she thinks it will be nice for them to see Samuel and how well he will do.
They are having an ND come to their hospital next Monday to do a talk on CAM treatments, diet and supplements for the cancer patient. Mary asked if I wanted to come, not only for informational purposes, but to also add to the talk. While I would LOVE to go, transportation issues would not make that likely, and as I told her, I probably already know most of what they will be saying, and furthermore, they are discussing things for the patient on treatment, not off. Basically, they want to introduce things that ease symptoms from chemo. I know for a fact that they don't do much in the way of herbs, etc while you are on chemo because they fear interactions. I told Mary that I would probably scare people because I am so turned off by chemo. But I did tell her that my hope is that in the years to come, that we will be remembered as the ones who walked away, against all odds and made it. If I am remembered for anything at all, I want it to be for saving my child's life, and having the courage to go against the system, and succeed. She told me that in five years they will call upon me to do some talks there and show parents who may be in a circumstance like ours, where traditional treatment is no longer an option, that there are still options for those radical enough to pursue them. Of course we both reflected upon the fact that 99% of people will never be in our position and that is a good thing.
So I will sit back and enjoy the happy sounds coming out of my little man. Amazing how taking a big dump can improve your mood!
Much love and thanks for your prayers and love.
4/11/06
For the first time in over a month, Samuel's butt is almost completely healed up. Something has started working. However, the constipation/narrowing problem persists. But at least the most painful issue has cleared up for now.
I gave up on everything for this problem and went to straight aloe juice. Yesterday, I thought we were getting some results, at least the poop was getting softer. But this morning we have mud pie again and today has been really slow going. The main problem is that he is starving, or at least HE thinks he is starving.
I did some quick studying on the anatomy of the GI that he has left. Trying to find what each part does. Basically, what he has left for intestines are divided into three parts. The first part, the Duodenum, is the first part. This part is mainly responsible for digestion of foods beyond the stomach. Without this part, you are dead. The pancreas, and gall bladder empty into this. All digestive enzymes provided by the body enter the gut here. The second part, the Jejunum is also responsible for absorption of the nutrients from the duodenum. You can live without about half of this. The third part, the Ileum, absorbs protein, fats, carbs and in the end, the bile which was secreted to digest all this. You can live without the first part of this, but not the last part. This is the part that made up Samuel's stomas, and is cut a little bit each time either a stoma was made, or he was reconnected. You can lose up to 50% of your small intestine and still live as long as it is the latter part of the Jejunum, or first part of the Ileum. Your absorption will be severely crippled, but you can survive. If you lose over 70% of your small intestine in ANY part, you die. That is it. So, based on that, and the x-ray of last week, the part which is most likely inflamed from chemo is the first two sections. This concurs with why his food is only being partially digested, and why he is hungry all the time, yet he is eating non-stop. Some part of this is working, just not sure which. Obviously, the ileum was not working to soak up the bile until just yesterday because suddenly the poop is not burning him anymore even though it looks identical to me. Samuel has spent the day sneaking into the cabinets and stealing food to eat. I usually catch him, but sometimes don't. I have allowed him to eat certain foods which won't aggravate it but it is like he has a tape worm, he just wants to eat and eat and eat, and I can see his stomach swelling up, and I know nothing has exited in awhile, and it is just a vicious cycle.
The last two parts of the small intestine are the cecum at the ileocecal valve. he doesn't have either of these. Looking at the anatomy and reading about what parts do, and which you can and cannot live without is frightening when you know you have lost so much already. I remember our Onc in Seattle telling us so nonchalantly that "you can lose a lot of your small intestine and be fine..." Just tells me how little he knew about the gut period. How little any of them know.
I am going to echo Monika's statement and say that he is NOT constipated. I suspect a narrowing, either from scar tissue, or swelling the damaged area is in the first two sections. These are the parts you are dead without. These are parts that need to just heal themselves and relax now. Not parts we can afford to lose. The latter part may or may not be functioning right now. At this point, I would say it is partly working. One of the tell tale signs of previous gut problems was weight loss. He has remained basically the same so that is a good sign and right now I am trying very hard to focus on the positives. This is a very positive thing. He is still pretty crabby at times, but has also managed to have more fun the last few days. He did not get a nap today though, so is driving me nuts because he needs to go to bed, but he is hungry!
Since reading up on the anatomy of his small intestine, I have gotten a bit more radical with digestive enzymes again to try to see if it might make a difference or at least make him feel more full but thus far, no big diff. I also made him so cultured/digested oat milk to see how that went and he seemed fine. The aloe, is helping a lot. As I type, he just filled up the toilet.....and the tub. hmm. But good! Still smells like pears, which he had now two days ago. That is not good. His meals should leave his body in less then 8 hours. And they should not smell or look like the food. The laxative the GI doc gave me works on the colon and in the colon. Hi, Samuel does not have a colon so how is it supposed to work. No wonder it wasn't. The other herbal I had also worked on the colon. It seemed to do better but not like the aloe which works on everything!
You know, I just want him to be able to eat, whatever he wants and I want him to get full and then STOP eating. That would be nice.
Tomorrow we go into the Onc clinic to maintain the port, check labs and I hope, to get another x-ray. I guess that will depend on how much anyone wants to help us. I want his labs to be good, but OTOH, I hope that something provides a red flag so that someone will get off their butt and do something more. I keep thinking of January of 2005, we took Samuel into the clinic, and they were about to dismiss all our concerns, and send us home, until labs came back and a few numbers were off enough to warrant him going inpatient. At any rate, some questions can be answered tomorrow and we haven't seen labs for two months and that is always interesting. Our Onc has agreed to do monthly checks for awhile and labs/port maintenance so that is good.
I cannot thank you enough for your prayers and kind notes. At least there is relief in one aspect tonight. Now if the rest will just follow, life would be good. Much love.
4/9/06
As I type the date, I realize that today is Bud's birthday. He is a teenager! I miss him.
The monitor to Samuel's room is on in my sewing room. Right in the middle of his nap, I hear blood curdling screams. We all know what that means, he is pooping. He shrieks until I come to fix him. When I hear it, I usually come running. I cannot tell you how mad I feel when I hear this scream. He cries and says it is all his fault and I assure him that it is not. Today he asked for his "air bag" back. Ugh!
I don't see much progress and I am livid that we will have to wait another ten days on this. I keep thinking of all the times we have went in with a problem that WE knew about but were put on the back burner only to have them come to the same realization we already knew, only it took them a few more weeks than us to get it. I hate that we are in this position again. Samuel seems to be pooping out what is going in, but not making up ground on the old stuff. It is taking forever for what goes in to come out and when it does, it is either acid water, or hard as a rock. Either way, his butt is a mess. The diet he is on right now should be giving him steady diarrhea. Not rock hard you know what.
I keep visualizing the X-ray and shaking my head wondering if we are being put off due to our surgeon's vacation. I am going to call the Onc clinic tomorrow and get Samuel in for labs and to be sure his port is working. If we are going to have a proceedure done, I want to be sure our line works. I also want to be sure all his other organs are okay, and electrolytes are okay being that he has been off his regular diet for a month now. I expect his hematocrit will not be in the normal range. But it would be nice to head off any other problems brewing at this point. Anyway, hopefully we can do that early this week and maybe see if our Onc wants to order another X-ray too.
Not much else to report, just frustrating!
4/8/06
We are still home. That is a good thing since I hate being there.
We are still home, meaning, no one is going to do anything! How well we know them!
Our surgeon confirmed that Samuel does have a lot of poop impacted. Based on the date of onset, he concludes that it is definitely caused by the chemo and his hope is that as the chemo leaves his system, this problem will too. Basically, we cannot do anything until we really try to clean him out. He okayed the laxative assuring us that if there is a narrowing, it will be okay to use this product as it is considered safe. We are to return in just under two weeks, our anniversary (is that day just fated to be sucky?) and do another series of x-rays to compare. If there is still no improvement, then we will schedule another exam under anesthesia and they will go in with a scope and look and try to clean him out as much as possible. Then determine what the best way to proceed will be. So it would seem that we are looking at another situation in which chemo has damaged his gut in some way that is not going to be easily rectified. And the bottom line is that Samuel could continue to be miserable for at least two more weeks, possibly more. Doesn't matter that it has been going on for almost two months with three weeks being very pronounced. Now, if he should start vomiting, THEN someone may take action. Until then, we are on our own.
I am relieved that they did not feel this was a major deal, but very very annoyed that he must continue to endure it. Our surgeon did seem impressed with Samuel's overall appearance and size, and I think he still cannot comprehend how a tube fed kid could be so big and radiant. And he did slip out another one of those details I just love (hate) to hear after the fact. Something along the lines of when he hooked Samuel back up, the damage was so extensive to his rectal area that he was really leary of it working and healing. This was uttered after I told him about the good month and a half we had between January and February where things normalized, and his butt healed up well. Apparently he never thought that would happen. He was also relieved to know that the problem in the gut was not in this area currently. This is such nice info to know now, did I NOT ask them this before sending Samuel off? I guess at least we have proven it can be done, and now if we could just get this new problem under control.....
He did agree that it was unreasonable for Samuel to take laxatives for three months so at least now a follow up has been scheduled and a clear plan will be made at that time. We will find the source of the problem rather than just treat the symptoms. The real test will be getting all this old crap, literally, cleaned out and then seeing if he can digest food again. We just want to let him eat, whatever he wants. I am tired of telling him no and making him cry.
So the hope now is that things just improve on their own, and that the damage from chemo is not permanent and does not require surgical intervention. Hopefully he knows what he is talking about and is not still icing over the cake. It is so hard to trust people who lie to you, even if it is little white lies.
So as always, given the green light to use laxatives, I am, but not theirs. I just got something herbal in the mail yesterday before leaving that is supposedly even more gentle than what he was given. Gave him some last night. We thought we saw improvement, but pretty much everything coming out was similar to the food going in. He is currently getting chicken stock made and colored with beets. So it goes in pink and comes out pink. Last night there was a nice puddle of pink with one brown chunk of something..... This morning there was a huge mud pie. Obviously old and rancid. Maybe we are getting somewhere? Whatever, once again, we are left to handle it, so I will.
4/7/06
Things still have not improved and remain about the same. We are being seen at 1pm. Please pray that our surgeon LISTENS and FINDS something that will make him know beyond a doubt that we have a major problem going on. Samuel has been asking to go to the hospital for the last few days to have someone fix his tummy. I couldn't sleep last night and was up for several hours so I took the time to pray. As I told Monika, they should just know how much I hate it there, therefore, I would not come in with bags packed unless something was REALLY wrong. The thing is, since we have not compounded the problem by allowing him to eat a bunch of crap, he is not puking, or completely uncomfortable, which is a good thing, for him, but not alarming enough for them. My word should be good enough. It is like calling my midwife at 2am. She doesn't go by the tone of my voice as I joke around with her, she doesn't ask 20 questions and try to find some reason NOT to come. She doesn't think that because I am laughing through contractions that it is not serious. She comes. No questions asked. She knows I wouldn't call her at that hour unless it was serious. Today should be like that. Please pray that it is. I am so worried that they may just brush us off. I leave you with words from Monika....
I am so relieved to hear that you got a 2nd opinion; it all struck me
as wrong too.
To me it obviously sounded like he has a narrowing -- either as a
result of scar tissue or some sort of mucosal tissue injury arising
from the chemo (given the timing of the problems, the latter does not
sound unlikely). After all of my years fighting blockages, I have
never used a laxative to solve the problem -- and never had a doctor
recommend it to me either.
Like the NP said, it could cause more problems -- just like when a
woman is induced, and the force of the contractions on a body that is
not prepared for labour causes the uterus to rupture. A blockage is
a serious condition, because even though his is not a complete
blockage, it can quickly become total. And in any case, it has gone
on far too long (it is unbelievable that is has been 2 months!). A
blockage is a potentially life-threatening situation: a colleague's
wife -- a doctor herself! who went to her OWN hospital! -- died of
peritonitis after her intestine burst open from a blockage. It is
very, very serious, and a GI doctor handing out a 3 months supply of
laxative (!!!!!) doesn't sound like she knows what she is doing!!!!!
SAMUEL IS NOT CONSTIPATED!!!!!!
4/5/06
No change. Maybe a bit worse.
I realized that Samuel's x-ray looked like the ones we would get with an ileostomy and the more I thought of what has been given to us as a solution, the more wrong it felt. I called the NP in Seattle today and got the one who knows us best. Not the one I spoke with last week though so I had to go through the whole thing again. She thought it strange that the X-ray showed poop only to the midline and stopped and asked me if I thought he was blocked. Well, Samuel has never had a full blown blockage other than the original typhlitis resulting in the loss of his colon so obviously, it is not complete, but I really feel and she did too that there is a narrowing. Something is wrong. Of course she had to be politically correct over the phone and could not just say, "you need to get your kid in here, what they want to do may do more harm..." but the fact that we now have an appt with the surgeon Friday based on the matter at hand and just a phone conversation tells me that she thinks it is a lot bigger deal than GI in Tacoma. And of course, "given his history...." She definitely thought that an upper GI needed to happen and that taking the laxative could make matters worse if there is some narrowing or blockage. Of course we don't know for sure but in a 12 hour period he has now gained a pound and is still not pooping enough to compensate for weeks of not going. What he is pooping is burning him and he is back to sticking his finger up his butt trying to pry it loose. His stomach is looking bigger tonight so I will weigh him again in the morning to see if he pees it off. I talked to the NP about going to the ER, but they don't have any say about the ER and basically they could send us home if they don't feel there is an issue. From my experience, these people don't listen to what you say no matter how much you could be right so I hope we can hold out until Friday. He is not feeling terribly bad considering, and is well hydrated but boy is he mad because he wants to eat. We are probably in good shape thus far because he hasn't been allowed to eat anything that will compound the problem. We will see how tomorrow goes, I may be packing our bags on Friday. At any rate, getting in with them Friday is really great considering that you normally have to wait three weeks. Our surgeon is going on vacation soon, so I think that helped get us in sooner. That and I let the NP know that we were not doing further chemo and she asked what that meant as far as his leukemia went. I told her as far as our Oncs are concerned, he will most likely relapse and die, thus we are palative care. I think that changed things a bit as well. There is that immediate second where their heart drops and they feel sorry for you and go into help mode. Whatever the case may be, something has to change. I want this fixed NOW. And as the NP said, "you know how slow things happen around here." Yes, I know, if we get looked at this week, they might begin to form a plan next week. The part that sucks in dealing with two places is that neither wants to step on the other's toes, no one wants to say that someone else's opinion or diagnosis was wrong. I keep wondering if I will ever find a doc who will have the guts to have an opinion and tell me that someone else's was wrong. We are talking about my baby's life here, I would appreciate someone who wants to help, not just treat the symptoms and send us on our unmerry way. There was one, but he was a Fellow. I always think of him as Renegade. He stepped on people's toes and pissed them off a lot trying to help us. He is no longer at Children's.
Well, that is it, things are still very wrong. Your prayers are appreciated.
4/4/06
Do you realize that it has been since 2/15/06 since Samuel's gut has been normal? All I want is for it to be okay again. This is almost two months of problems again.
Today's X-ray shows impacted poop in the top mid section of his intestines, which correlates to the place I felt was hardened. The lower part is empty. There is nothing there. Nada. No problem in the rectum, and the rectal pouch is empty as well. What is coming through is edging around the impacted poop and not even using the pouch at all due to the problems up top. This also correlates with the extreme loud noise I heard up top as the food is trying to push through, and the very quiet sounds down below as if passes quietly and easily. It was the quickest x-ray in history, in less than three minutes I had it in my hands and was able to read it myself immediately, no doc necessary. My poor poor baby has been asking me for days now to fix his tummy and I could not.
The GI doc, who is still as wonderful as ever, opened our door, saw Samuel, went out to the desk and swiped one of the Easter ducks right off their desk. One that was there for decor. After telling her how everything was great before chemo, and everything has been wrong since, she agreed with me that it was indeed the fault of chemo. Even before the X-ray we both felt like he just had a lot of poop stuck. I have done everything humanly possible to free it, and she was quite impressed that I was able to pretty much diagnose it myself and not feed him more food to continue feeding the problem. So now, he has been given some major laxative to see if we can break it up and have things go back to normal. We are still waiting.
Nothing goes off without something I wonder about and today is no different. She gave him the laxative and dosed it for THREE MONTHS! Okay, if you have to take a laxative for three months, doesn't that make you think that there is a deeper problem? If what I am giving does not work in a few days time, I can double the dose. If that doesn't work, we can get something even stronger. And then what? I am hopeful that this will just eradicate itself and we will be done with it and can go on with life. But, I also know that things are never that simple and while I am not looking for a problem, or wishing one on us, the bottom line is that if this does not clear up in a few days, we will be going to Seattle. He cannot go on like this. He cannot eat, I can only feed clears, this is no way to live. I feel in my hear that what I have done for the past week now should have worked. I don't know, we shall see. I hope my gut feeling is wrong. Until then, he keeps asking me to fix his tummy, at least he figured out who does that these days. Interesting point to mention, the pharmacist told Mark that this laxative was their top selling item in the entire place. Okay, that is just a little sick!
And for my last dig since I am feeling irritated, I hate hospitals! Newsflash I know. Going there just really seems to add insult to injury. The very act of just parking, walking in and oh my favorite, waiting. I just need to go in, get an x-ray and leave, or at least that is how it feels. That would take only a few minutes, not two hours. Okay, I am done!
4/2/06
Well, the Coconut Milk Treatment was a failure. Normally it causes diarrhea and I am usually sorry I give it. This time, nothing. Occasionally something comes out...yesterday he pooped well overnight and then a dime size poop midday. He is getting over a liter of liquids to help push stuff through. You have to start wondering where it is going. Samuel has been saying his hip hurts for the last few days and at first I thought little of it. Today I asked him to show me and he pointed to his waist where his liver is. That makes me think we need to get labs done to check functions to be sure that something is not out of whack. He says his tummy feels really yucky. It does not appear to be growing larger, which is good and I think that the majority of the liquid I am giving is being peed off. It is just really frustrating at this point because I feel like we are not getting anywhere and I fear that we will take him in on Tuesday and they won't find anything that warrants further investigation. You know, the usual, everything looks normal yet we know different. I have had a pot of soup on the stove for two days now and Samuel is basically on clears today. I thought of when his gut got hooked up and they did the clears all night trying to get everything cleared out, so I tried it this afternoon. He did poop a little and it is getting lighter in color, but mostly he just wet the bed, and then even worse, somehow detached his tubing from the pump and gravity emptied his entire stomach contents into his bed. He thinks he is starving even though he was so full of fluid that it dumped everywhere and that really just proves to me over and over that we have a definite issue. So I guess we just bide our time trying to make him as comfortable as possible until Tuesday. Then demand that someone do something. In feeling his tummy, it is soft up top, and has a harder section at the midline and all the way across which may be scar tissue, but I sure don't remember it. Interestingly, when you listen, up top where it is soft, there is lots of bowel sounds. Down at the harder part, there are significantly less. It is so completely annoying...just imagine how he feels.
3/31/06
Yesterday Samuel seemed a bit better. Today a bit worse than yesterday. So, no major change. Things are moving through very slowly, VERY slowly and painfully. I can hear his stomach growling, it actually sounds like it is burping at times. He says it hurts, says he is sick, and of course, his butt hurts. He is still just terribly grouchy, and I don't blame him, so am I. He still wants to eat everything and is craving things that will only make this worse. He has settled for ice cream which seems to satisfy his mouth's need for something to do. What is coming out still has pieces of undigested food and you can smell what the food was as well. Stuff is still trying to come through despite not allowing him to gorge on more. And still doing the coconut oil or olive oil, not helping much. Tomorrow I will try the coconut milk for the entire day. That in the past has really done a good job of cleaning out. Problem is, once it starts, it REALLY works well. He is peeing a lot, which means that what is going in is being absorbed really well, which is great, he is not dehydrated, but that means it is not helping to push through what is stuck. So, bottom line is that we are not making any progress, he is full of you know what, he is doing the "puke" cough and I keep thinking it is on the way, yet he hasn't puked yet.
The fact that we are done with chemo is slowly sinking in. Well, I stopped giving chemo last summer and even them I only gave it occasionally, so that is no big revelation. It is the no more chemo appts that I have no control over that hasn't sunk in. Maybe next month. I called a few friends to tell them the happy news. They don't quite know what to say. I talked to my Dad the other night, he doesn't quite know what to say either. He understands about the chemo part and why it has to end, but no one really gets the gut issues at all. I guess you just have to live it to get it. I talked to my friend Carrie today and she thought that the decision we made would have been really hard. She is the one who was here on the first night Samuel's tummy filled up with CSF. He went from being semi okay when she arrived to being beyond consolation by the time she left. Just in a matter of hours. She was beside herself wondering what to do to help, listening to Samuel beg us to help him,screaming, crying puking and none of us could. Neither one of us will ever forget that night. Reminding her of what life was like on that night is a pretty good comparison to many nights we have had in the past few months. Just unbelievable. Unless you were here, you just would not get it. She was under the impression that since we are done, Samuel's gut will go back to normal. We can only hope that someday that is the case.
In the last few weeks, Samuel has started to notice smells from the food being prepared. He suddenly thinks things smell good, but still refuses to even try them. This is the first time that he has actually expressed that something smelled good, or smelled at all. I wonder if his nose wasn't working right previously. We really hope his taste buds are not far behind so that he can eat something other than things that ball up and reek havoc.
Yesterday he played outside for quite awhile. And he did more than just swing so that was nice to see. He doesn't want to be too far away from me though so it is hard to get a lot accomplished when he is up. We went to the market tonight and I carried him on my back. He was a little snuggler the whole way, happily waving to people in the store. There is always a moment, if not many in the day when I reflect on how lucky I am to be his mom. The first Mother's Day after Samuel was born all I could think of was what a perfect gift he was. I still feel that way. He is so special and I think that everyone who meets him notices that "something special" as well, even if they cannot put their finger on what it is. What a perfect little family we have! It is so awesome to watch the older kids learn to be more grown up, and to point out to Kaysha and Daniel that the way Anna and Samuel act is the same way they used to. Boy do they get a kick out of that, especially when they find the little ones being annoying and I remind them that they did the exact same annoying things too They are sure going to understand a lot of adult things early in life, that is for sure.
Thanks for checking in on Samuel and to those who expressed joy for our child. I cannot think of a better way to enter a month I just feel like we need to tip toe through. Easter is a holiday to remind us of hope. Hope and faith in God. It will be extra special to us this year. Then comes Mark and my 10 year wedding anniversary, and the two day celebration of Samuel's birth. It is hard to remember when our anniversary ends and where his birthday begins, the two seem to melt together as one. Similar to the way Samuel brings everyone together. He is very excited about having a birthday, and a Dora cake. Much love.
3/29/06 - Second Update
Since my last update of 3/21, I got sick with the dreaded cold/virus. It attacked my head mainly and I have had this sinus pressure headache and have just felt rotten for the last week. I am just now starting to feel better. Oh, and to top that off, AF decided to make her appearance so that just added insult to injury. And the icing on that cake was and remains Samuel's GI issues which are getting progressively worse by the day. Pretty much now, there is very little poop at all. It has been very frustrating to try to troubleshoot what is going on. He is cranky, hungry, says his tummy hurts, his butt hurts, he still sounds like he has the cold despite getting better. Now it seems worse. But I also know that when things back up down below, and things get bloated, he gets really moist up top. Currently, I am waiting for him to start throwing up. It seems only a matter of time. I have given him Coconut Oil or Olive Oil daily trying to soften things up and get them through, but it is barely helping. This is very reminiscent of Feb of 05 when we ended up getting the ileostomy revised due to this very type of problem. Not good, not good at all.
Midway through last week, I contacted Mary and told her that we want to be done with chemo, period. I let her know the gist of the problems which were not nearly as bad as they are currently. Our Onc was out of town so she said she would talk to him but had no idea how he would respond. She basically told me he would say, "But Mary, he will relapse." And she told me that she did not know how to respond to that. I told her that if he says that, to ask him if he is God. The bottom line is that he was fine last month when we went in for chemo, and ever since then things have gotten progressively worse. Due to chemo? Who is to say? It is another of those coincidences that we always seem to have, so I would say yes. But being that the Oncs like to argue that is is not their poison, I am sure they would say differently. At any rate, we were supposed to go in for more next week and that is just not going to happen. Mark and I have talked it over, and agreed that allowing the docs to slowly ruin his body is just asinine at this point. We have no guarantees of anything but demise and misery for Samuel. I thought about Mary's last words to me for a day and decided to send her an e-mail to let her know my heart, and where we stand at this point. The note is below.
Hi Mary,
I just wanted to LYK a few things I have thought of since we talked.
One, I have no problem speaking to Dr. I. directly in regard to stopping treatment on Samuel. I only called you to see if you had any indications from him as to how he might feel about this decision. Also, it is nice to have your alliance of course being that you have known us longer and have a really good idea of what we have been through. Most importantly, you are a mother, and can imagine what it would be like to be a primary care giver to a child with this many problems and how it might feel to watch them suffer daily. I don't think any man can grasp that. I don't care how compassionate they think they are, the fact remains that women stay home with their kids for a reason and we both know what that is. That being said, feel free to print this out and let him have it.
Two, regarding the relapse issue. As I think I made clear to you yesterday, relapse scare tactics do not move us, scare us or force us to continue treatment. We have stopped treatment right in the middle of treatment phases despite what our Oncs of past have advised in an effort to save Samuel's life, and all of these times, it did. Salvaging what is left of his body is my main concern. Some Onc may think he is killing the cancer but in reality, it makes no difference if his body is ruined in the process. When we approached you in December, we believed that doing IT chemo was possibly an option and agreed to do it as long as it did not make matters worse. But at this point, I really feel like continuing to do something I know causes GI issues on top of the ones I am trying to deal with daily, is stupid, asking for more problems and will likely result in another surgery to undo more damage. The scare tactic which works on me is the thought of adding more poison only to slow ruin what GI tract he has left. When we came in in Feb, things were fine, Samuel was doing great. Since being there, I have never caught up on the GI problems. Something is not right, that is very obvious. Time may work it out, and I hope it does, else, we will be back inpatient trying to resolve it.
We have come to grips with relapse and what that means to our family. Ultimately we are the ones who suffer the loss. We will deal with the aftermath. We will be the ones with the hole ripped in our hearts, as if it is not already there. I am still trying to come to grips with the reality we have lived in for the past almost two years. It is hard to get it all worked through when you are still dealing with issues. If Samuel relapses, the failure is not because of the Onc, or any of the Oncs as a whole, but on the poison which did more damage than good. I asked Dr. L. way back at the time of diagnosis, before all the problems began if he though that the cure was worse than the cancer. He assured me it was not. Well, Mary, I beg to differ. Had we not brought Samuel in to the ER that night, he would have just died in his bed. It would have been a lot more peaceful death than being tormented all night by diarrhea, blockages, raw ruined skin, and being afraid to poop. Not to mention everything else he has been though.
The one thing Samuel has going for him IS his desire to live and overcome. Don't you see that when you look at him? He should not have survived all of that, yet he did, and he lives cancer free. Let us never discount the child's will to survive, his determination to live and the fact that he has never been a statistic, he does not live by them, and he is not afraid of them. He doesn't understand the word can't.
The bottom line is that he is a child of God. If he lives a full life on earth cancer free, it is a victory! He is a living miracle already. If he relapses and dies, it is still a victory. He will be free of all this life has taken from him, he will be in heaven and he shall never want to come back here. I am not a selfish enough parent to want him to live here on earth, in torment. I am his mother. My job is to make every day of his earthly life the best it can be. I cannot predict what will happen. Neither can any Onc. They are NOT Gods even though we have met so many who think they are. Having them say that he will for sure relapse is something they will never know, and something I don't want to hear uttered in my presence. By all accounts, he should have relapsed, and he should be dead. he should have permanent brain damage and he should be retarded. As it is now, when we can get the GI issues under control, his life is good. He is happy. We have a sacred 2.5 more years to try to muttle through the GI stuff without surgery and we might actually get some relief. Scar tissue and blockages are our biggest enemy right now. Having whole foods come out the other end undigested is a bad sign. We had this happen last Feb of 05, and ended up in surgery with two kinks in the gut that no diagnostic tool could even find. It wasn't until they opened him up that they found it. Why on earth is it so hard to give chemo some of the blame in this it deserves? Why is it so hard to stop? Especially when it isn't even clear if there is any benefit to doing IT's on a kid who is shunted anyway? You know, it seemed like a good idea in December. Samuel doesn't react to chemo the same way as other kids do, I should not think we need that pounded into our heads any further. I will certainly be livid if I end up taking him to surgery because of it again.
Stopping chemo is not giving up. I have never given up. I pumped Samuel my breastmilk for over a year of treatment. I did this so he would never have a low ANC, and so he would never get sick. The lowest his ANC ever got was 250, and his WBC was never less than 1k. He never needed a transfusion and he never got sick despite two consecutive months of Consolidation. Breastmilk was considered a clear liquid at Children's so all that time he could not do anything but clears, guess what he got? Beyond that, we continue to do diet, herbs, essential oils and most importantly prayer. While this may be laughable in the conventional mind, it has worked for us, done a lot of good, it hasn't ruined even one organ, hasn't required surgery to fix damage from, and does not make me sick at the thought of it.
Mary, I know I am giving you an earful here, but I want you to know that we are very clear in our desires and do know what we are asking. You have always been my friend and we have always connected and I do feel like you know what I am saying, and that you know me well enough to know I mean what I say or I would not say it at all. I appreciate all you have done for us in the past, and all you continue to do for us now. I am sure it is not easy.
No response is necessary to this note. Monday is my birthday. The best gift ever would be to know that Samuel can be free of further torment from chemo.
Much love.
Well, my birthday has come and gone so I did not get the news on it, but knowing we are done is the best gift I can give to my heart, and the best early birthday gift I can give Samuel. She called me today and said that they understood where we were coming from and that WE needed to make decisions that are heard and respected. Basically no contest. I was prepared for an argument or meeting since that is what our Seattle Onc would have done so I am glad that it is just done now. It all started in the hospital we are with now, and it will end here. In writing this last letter, I realized that I don't blame the Oncs for wanting to help Samuel in the only way they know how, this is the fault of the poison. The Oncs could take a lesson in all this, to listen to parents, to allow them to have a say, to not treat all kids as if they are the same, just a chart, they are not. They could take a lesson from our current Onc who was smart and compassionate enough to back off, not push and push and ultimately kill and destroy.
Last week in reading some updates on some of the poor kids I continue to follow, I came across some good news and praise to God for His medicine. I have never begrudged others for taking the chemo route, and I admit to biting my tongue a lot when the subject is brought up, but never has it ever been made so clear to me as it was last week......Chemo is NOT God's medicine. Chemo is MAN'S medicine for a disease man brought upon himself. God did not make cancer, Satan did. And if chemo is not a tool of Satan, I don't know what is. Never has the thought of anything else brought such terror in to my heart. Never has anything scared me, sickened me, or deceived me. Chemo fools you into thinking it is working, all is well, and then the after effects sneak up on you when you least expect it. Or worse, you kid relapses on a protocol that is supposed to be very effective. In our case, we just did not know what hit us. It attacked from all angles at once. Chemo is not from God. I wonder how many other things we will get to heaven and have God say "How on earth did you ever think I created that?" Samuel made it through that ordeal through God's grace and mercy and by you who kept praying and keeping Samuel's name in front of God's eyes. I realized how urgently we need to pray for others undergoing this horrible treatment. A friend sent me a note tonight that really hits the nail on the head, "I think that after going through the medical crap that most people either come to the realization that they need to change to live or they will die under the care of the drs. " Until we are willing to look at ourselves and they ways we damage our bodies every day with chemicals, crappy foods, and toxins all around us, there will never be a cure for cancer. Chemo does not kill cancer, many of the chemo drugs actually cause it. Cancer cells become resistant to chemo and find ways to hide and mutate and spread. As my friend Sandy said, "Samuel did not get leukemia from a chemo deficiency." How many are willing to change to spare themselves this misery? Would you like to have your child trade places with Samuel or any of these other poor kids enduring this misery? I don't see any hands waving. We have the almighty dollar to thank for this. It is all about money, drugs and money. Not a healthier lifestyle, where is the money in that? Too many people would go out of business if people decided to look around them and stop harming themselves on a daily basis. God forgive us for what we do to ourselves. I pray forgiveness for my part in Samuel's cancer. I pray that God continues to guide my hand in things I can do for him daily to save his life. These Oncs had their turn and they failed us miserably. Samuel paid a price for his life and he will pay it for the rest of his life. It is too late for them to make anything right, we cannot go back. So, I would rather trust God and listen to Him. He spoke to me last week, that is for sure. And when He made clear to me that this was not His plan, I picked up the phone and ended it. People wonder if God speaks to anyone these days, well let me tell you, He does, if you ask, bear your soul, and you listen. I understand now that continuing chemo ties God's hands for healing him. I have felt like Hannah several times in the last almost two years as I have laid Samuel's life in His hands, and trusted Him and His plans. It feels good.
Mark does not say a lot about all that has happened as far as how he feels about it. You know men, bottle it up. But it does come out at times when we drive by an 80 year old woman chain smoking on her front porch. He says, "I don't see why poor baby Samuel got leukemia and grandma there is smoking her cancer sticks and fine." Or he will admit that life will never be the same. That safety net we think we had over our children is gone. There are some real lessons to be learned from our situation. Why do I feel like we are the only ones learning them?
Here is a good example of what I mean about money driven doctors. I spent the whole morning yesterday trying to make appts for the kids to go to the dentist, Samuel to go to the eye doctor, and Samuel to get in to some GI somewhere. The dentist cannot see the kids until May. No big deal. The Tacoma GI also said May. Okay, that was not the news I wanted to hear. They took all my info and sent it to a triage RN who would look it over and determine if our doc should see him sooner. They called later in the day to say it was moved up to next Tuesday. I call the eye doctor to see about getting him in there and they don't have openings until May. A little history here. The MD's near us I hate. One is a total ass. The other is the one who did Kaysha's surgery and then had no clue why it wasn't effective. Both of them are out. The next closest ped MD is about 45 min north and has seen Kaysha and Daniel. She has a nice office, very kid friendly so I thought that was a good option. So, we get the date out of the way and I ask about our Ins and if we need a referral or not. The receptionist did not know but did mention that if Samuel was a patient in the network, they would have all his info and could look him up. He was a patient seen in our city from birth on. She could not find him. She asked the billing office about the ins and was told they don't take new patients with our ins anymore. Unless he was already in the network, they did not. I told them he was seen in the Enumclaw office and they said there was never an office affiliated with them there. So basically, because of our ins, which does not pay well since Samuel is considered disabled, they refused service. I asked to speak with the office manager and was sent to voicemail. I was pretty livid at this point. Samuel was an established patient in their network, but the office in Enumclaw has since left it and he is no longer in their system. Plus there are people in this ritzy town who obviously look down upon people from Enumclaw since we are all hicks here and think we don't know where we took our kids for doctor visits. The office manager did call me back, but basically told me the same thing. She did, however, remember the affiliate in Enumclaw and was going to tell the employees who all thought it was SO funny that I would think there was one in this town. Anyway, long story short, we were refused service based on ability to pay. No one cared that Samuel is a little 3 year old boy who almost lost his life, has had all these problems, and is now showing crossed eyes. Didn't matter. Crappy insurance, no service. You have your whole life fall apart and you lose your insurance that was considered "good" because you cannot work or afford insurance anymore and you get treated like a low life pee on. Mark and I don't even have Ins. I guess we could take him in and pay cash, but after the treatment I received, I will never go to any of their clinics again. For those who live near and want to know who did this, it was Virginia Mason of Issaquah. So now, I don't know what to do or where to take him. I wanted to take him to someone I knew was nice, not some lottery eye doctor who turns out to be an ass. Everytime I try to deal with the medical system, I realize why I hate it so much.
I talked to Seattle's General Surgery NP's yesterday who were concerned about the "troubling and strange" description of Samuel's GI problems. They brought up narrowing of the rectum again which would be BAD news for him since that is NOT supposed to be happening now. Or just getting another upper GI barium study done. She was concerned about mechanical blockages with his prior history and said he would be an even higher risk. Unless we are emergent, we cannot be seen there for about three weeks. By the time I spoke with her, I had the appt for next week in Tacoma so they were content to see what happens here since we can get in sooner. But now, I am having second thoughts about the one here because our history is not here and I am not sure they will listen and HEAR what I am telling them. Or even think about rectal collapse. The last thing their RN said on the phone was that they were going to have us meet with the dietician again. Obviously, they have NOT A CLUE. So I told Seattle that if they do see something they think warrants action, we will take the paperwork and come there. They said they could expedite an appt if there is a need for it. At this point, if things don't resolve soon, we may be in an ER. Sadly, that seems to be the only way to get some eyes to look at your situation NOW.
So aside from all that, we have the major contributor to the problem GONE. One less thing to worry about and I am very glad for that. It might sink in tomorrow but as for today, it is not feeling like a huge victory with all this other hanging in the balance. I realized over the weekend, that since Samuel lost his colon, we have never made it past 9 months without needing another surgery to work out problems. That does not bode well or sit lightly with me. If we go to Tacoma and they see nothing wrong, as typically happens, then I guess we just sit and wait for it to resolve or become life threatening. That is the reality we live in.
Samuel is pretty miserable. We have had some really nice warm days and while he has went out to play, he only wants to swing. And he won't stay out long, he will come in all alone and sit and do puzzles or watch TV because he does not want to move around much. Everything hurts his butt so he does not want to sit on it. His tummy is not soft either. Really, it is ridiculous. He should be able to eat. He really wants to. He walks around sobbing because he cannot. As I told Mary today, it truly sucks. But Praise the Lord anyway, he is free. Now God, heal the rest of his body, and the rest of our souls.
3/29/06 - First Update
There is a lot going on here, and it is not all good. Don't have time to update on all the details now but did want to share the great news.
SAMUEL IS FREE!!!!! NO MORE CHEMO, EVER!!!!!!
His life is entrusted into the hands of God. Thank you to our Onc and Mary for allowing him to be free and understanding why this has to be now.
The GI issues continue. Samuel is going into GI next Tuesday because that is the soonest we can get in. He can no longer eat solid food, at all. It is not making it through. I called Seattle to see what our former NP's thought since they know him so well, and they feel like we need to rule out his rectum closing up again, or a narrowing somewhere in the GI tract. We have had the same problem for two weeks now and I am not making any progress.
But, Samuel is free! Praise the Lord!
3/21/06
Well, things got better, they got worse and now they lie somewhere in between. Everyone's fevers subsided within a day after my last update which was nice! Daniel missed a birthday party over last weekend since he was still sick. Kaysha is pretty much fine now, and Daniel still sounds congested. Anna seems better, Samuel is still coughing and says he is sick. Mark and I are now fighting the cold symptoms. I feel pretty awful today so am sitting here drinking coffee trying to determine if I can function beyond the minimal.
The major problem continues to be Samuel's gut. Either it has been working overtime or not working at all. I thought I had seen a lot of poop the last time I updated, but he did it again. However, that time I was expecting it. One day he did not poop at all. This was after the explosive diarrhea all over him and his bed. The next day he wanted to poop but it was stuck, literally. I figured this out after I found him trying to pry it out with his fingers....yuck! I got him on the toilet and he did go, but unfortunately it was so big and hard that it was like having a baby for him, sheer agony. After that I gave him the coconut treatment, which is two tablespoons of virgin coconut oil down the tube. It usually works wonderfully and it did not fail. He managed to rid himself of the rest of the back up with the major explosive one just after I got us all into bed and was just about asleep. I woke up to him screaming and ended up having to bathe him and change his bed. Lots of sheet laundry this last few days. I did not know what caused this major problem, but unfortunately do now. So another solid food has been taken away from him. He doesn't replace these with any other foods so it just sucks. He is pretty much down to cereal, crackers, bananas and yogurt. That is it and I am not kidding. Dry cereal and crackers you have to chew up pretty well before you can swallow, but some of these other things he is just swallowing in huge unchewed chunks and they are coming out the other end as such. Kristina sent me this after my last update....
I hated to read of Samuel's hell on earth. How do you tell a 3 year old he can't eat when his sibs are eating chips? Praying for you deeply. We shall start now praying for Samuel before every meal and feel grateful that we can eat whatever we want, whenever we want to. It will help to keep us all mindful of him throughout each and every day. I don't know why I didn't think of it sooner.
It is a problem. A lot of the things that the kids want to eat, and do eat, he cannot. So he watches them and cries. Is it fair to take one thing, or several away from all? Not really. So now they have to eat these things in secret. This trend is not really all that surprising considering that I know he has to have a ton of scar tissue making it more difficult for this food to make it through. But I am seriously coming to terms with the fact that he may need a feeding tube for life and eventually HE will have to figure out how to feed himself.
So we currently are working on breaking loose the current food stuck in there, the one now removed from his diet. This is day two of trying to eradicate it. So I am expecting another huge mess here soon. Hopefully before I go to bed this time. Waking up out of a brief sleep to that is not my favorite thing at all! So as of right now, his butt is sore, he is tired of pooping, he feels like crap from the cold, he can't eat, thinks he is starving, and his butt is broken out. I have also noticed as of late that one of his eyes is crossing. This was the big indication with both Kaysha and Daniel that they needed glasses so we will need to deal with that in the near future as well. We both have felt like he could always see fine and hoped that at least with everything else, that he would not need glasses. But neither of us have wanted to subject him to yet another doctor appt until it was really needed so I guess now it is. He has also started to have problems with nightmares. I don't know if it is his new room, or just his imagination, but that is at least an easy problem to solve. he sleeps great with us.
Home health care came out today to do his port, which did NOT draw again. She thought it was the way it was accessed, but now our next clinic appt has been moved up to April 5. This was a different RN from our previous one so I went over a lot of the history again and told her why we were not going to the hospital with Samuel's current gut issues. Then we went over all the shunt stuff too, and she remarked that I should write a book. I told her that it was all written already, online, and if I ever did write a book, it would not reflect well on doctors or hospitals as a whole. Not to mention my total despise for Oncology as a whole. She thought that that was fine. Seems home health care RN's, or at least the two I have met so far, left the establishment for a good reason. Overall, I have been very impressed with these RN's. Anyway, I gave her my card.
Well, life goes on and so do we. I have gotten a lot done despite feeling lousy and caring for sick kids. Samuel helped in the redesign of the pouch made specifically for him. He is always a happy little clam in it and wearing him on your hip is just the most natural place to hug him all the time. This will always be a special pouch to me because it was made for him and everyone who owns one has a part of his legacy as well. It is really overwhelming to think that this business was inspired by him, started because of him, and we almost lost him right in the middle of everything. This business and our patrons have allowed us to remain at home to care for him, because of this business, we get up every day and live. Working has helped me cope, gave me a creative outlet, let me focus on other's lives, helped me to meet friends I would have never had other wise, brought us all so much love and fulfillment despite the rocks in the road occasionally. Certain patrons revitalize me, inspire me, and keep me going. It keeps us united as a family and allows us to enjoy every day that we are blessed enough to have with Samuel. Some people are surprised that I remember them after months or years have passed and it is usually because they have touched my life in some way that they never even knew about. I don't know if other study feel this way about their customers or if I am just really lucky. I have always felt I was just really blessed by all our customers who usually are referred to as friends after a certain point anyway. So, one of the photos that is cute but did not make it to the pouch page is above.
Well, the coffee is gone so I must now do something! Thank you for checking in, sending your love. Right back at you!
3/16/06
Samuel came downstairs to get in bed with us last night. He laid there tossing and turning for awhile. I told him to go to bed but he couldn't. He drank a 10oz glass of water. I knew something was wrong. I felt his face, hot! I felt his body, hot. I felt his hands and feet, freezing. Fever. His heart was racing and he had that all too familliar behavior of fever. It is almost like he gets an adrenaline rush from it. Either that or it scares him so much that he is just up. I remembered the first time his fever spiked in the hospital, right after his diagnosis, right after the pneumonia was "under control" and we were supposed to go home. Suddenly, he woke up and was "UP" He wanted to watch a show, drink a gallon of water, and the next thing I knew, all the alarms were beeping. Heart rate was 180, respiratory rate was in the 60's and my RN's came in to make sure we hadn't been jumping on the bed. Far from it. They took his temp, 102.5. That did it, I knew it. We were staying. This marked the beginning of his gut rotting out. His stomach swelled up like a balloon, as did the rest of his body. I did not know the tell tale signs of fever that night, but I sure do now. And it still sends a bit of terror through me when it happens because I remember all that went wrong.
I got some ibuprofen, pushed it into his tube and took him upstairs to "watch a show," customary fever remedy. I took his temp, 99.8f. Not bad, but his baseline is usually between 95.5-97.5. I took my temp just to be sure it was working and it was 95.5. I sat by his bed for thirty minutes. Holding his hand,. Sitting on the floor with my head resting on the side of his bed. Similar to the way I used to do in the hospital. Funny how this little event can bring back all those memories. I reminded myself that he HAS an immune system, and he has NO chemo on board so all is well. Anna had a fever yesterday as well. Kaysha and Daniel are both finally better and both of them had slight fevers. So I KNOW what it is, and why he is sick, but when it is Samuel, it just seems wrong and a bit scary. Oh and did I mention it could have ALL been avoided? Yes, I am still pissed about that.
Last night, it was just him and me, waiting out a fever, in the middle of the night. All too familliar. About 15 minutes into the ibuprofen, he started playing a bit, making happy noises. I took his temp again. Same. Another few minutes passed, I took it again. 98.8. Better. I went back to bed. He watched the rest of his show and was back downstairs to sleep with us. This time, he was cool, climbed in and slept.
Anna was miserable yesterday. Had two naps and did not eat anything but breastmilk. At the rate she nursed yesterday and last night, every hour, I should be engorged soon. She is thankfully better today. Her fever symptoms were just walking around the house crying and laying on the floor. That seems pretty typical. She did not seem to get the adrenaline rush.
Mark and I have not gotten the sickness which seems to be a cross between a cold and the flu thankfully without the vomit and diarrhea. My nose is starting in today though! I know I am most at risk now because I am the one not getting much sleep.
Samuel's butt problems continue, as if being sick is not enough. He has not had as much diarrhea, but what is coming out burns. He told me yesterday that he doesn't want to poop anymore. This morning, the cough has arrived and he has been crying that his throat hurts. His lungs sound clear and his breathing has been normal. The reminder of pneumonia is never far from my mind when he sounds like this though. I never want to revisit that. We were told at that time, he would always be at a high risk of getting it repeatedly, but he never has. Being in the hospital is something I don't want to do right now.
Some more ibuprofen this morning and he is pretty happy now. Cough has subsided now that he is up and about. The fever had returned this morning but is gone now. Let it be gone for good. He hasn't had a fever at home since his butthole exploded open. His last fevers in the hospital were post ops.
His port is due to be accessed and home health wants to come this morning. I may put them off until next week at this point since I don't want him to cough onto the site. No other infection risk is necessary.
Thanks for checking in. Much love.
3/13/06
I would love to report that Samuel's gut has improved, but in fact things have gotten worse. We had a rough night last night, I was up every hour with him pooping, crying and trying to help ease the pain of a very sore butt. Of course, we had nothing in the arsenal for such a night and ibuprofen just doesn't cut it. I have never seen so much poop in my life as I did this morning. He came down with it everywhere, from his belly button to the middle of his back, all over his clothes and later I found the huge puddle in his bed. I am not sure what has caused the sudden break in the flood gates but I hope that we had some relief tonight. I swear he just should not eat anything by mouth, his body just doesn't know what to do with it. I called the hospital today to see if they would call something in for these emergency type situations but our Onc was not there. It was deferred to our "old" Onc, and I guess he did not want to touch it with a ten foot pole because I waited all day for an answer. I spoke with an RN there this morning who wanted to argue that a narcotic would not be helpful in our given situation and I just told her to talk to OUR Onc...period. He is calling in some Vicodin and something else that binds bile and acid so that we have something to help in extreme cases. I am all for the natural, but there are just some times when extreme situations call for extreme measures. I shake my head in amazement wondering how we ever survived months and months of this. And I bang my head into the wall because everytime he poops we have the same conversation...."You poop in the toilet it won't hurt like this, you poop all over yourself and it hurts more." It is pretty futile but I figure if I say it enough, it might sink in. The nighttime poop is quite another story and after talking to Monika, I figure he will just be in diapers for many years to come for nighttime use. Either that or he needs a bathroom attached to his bedroom, like within ten feet of his bed. He is sleeping now and has not pooped since earlier this morning, which is great. I would think he would be quite empty by now. He has only had stock and Lactobacillus in mega doses today and that seems to be stopping it for now. Of course he is STARVING and thinks I am horrible for not allowing him to eat. It is a vicious cycle at times because it is so hard to not allow him to eat, much less eat the little things he really wants.
Since we moved his room upstairs, a night of caring for his butt every hour requires a trip up the stairs and back, God help you if you forget something. I feel pretty tired today, that and disgusted. Ever since the last spinal tap, things have not been quite right with his gut. Related? Who knows. Supposedly this poison does not attack the gut other than to cause nausea for the first few days. If that is not attacking the gut, I don't know what is. We are just at 7 months past the last gut surgery and I am wondering if adhesions are part of the issues of late. Suddenly there seem to be a lot of issues and it is a crappy way to live on days like this. Excuse the pun! At least tonight we will have something to put away for the "next time."
Topping that off, Kaysha and Daniel are sick. They came home sick after staying at Mark's parents house and interestingly enough, cousin Shaye was sick. Don't these people know that WE DO NOT WANT TO BE AROUND SICK PEOPLE!!!!! Is that SO hard to understand? I have so much to do in a day that I do not have time to be sick. So far, just Kaysha and Daniel are sick with cold like symptoms, but I think Kaysha had a fever earlier as well. Samuel has been fine aside from pooping his guts out and burning his skin off....yeah, that sounds like fun doesn't it?
My cousin passed away this weekend from you will never guess what......cancer. I believe he was less than 40 years old. He had a few kids, a wife, a sister, parents, etc. He was diagnosed with some rare eye cancer about five years ago and it metasticized and went everywhere. He was actually shunted in the past month due to hydrocephalus caused by cancer all over his brain as well as having bones in his body actually break from cancer spreading. It is and was pretty awful. Now he can have peace, finally. Unlike most people I encounter, I am not mad at cancer, but mad at what causes it and the fact that there is no proven way of killing it for good.
Almost two years ago, we made the decision to "save" Samuel's life by approving a chemo protocol. I never agreed to ruin his body, or his life in this process. I remember asking our first Onc if the cure was worse than the cancer and he assured me it was not. Oh, really? In our instance, I can assure you that it was. Had we not taken him to the hospital on the night he was diagnosed, he would have just fallen asleep and died in his bed. Peacefully. He was in a lot less pain that night than he was in LAST night. I will never regret making the choice to save his life because he is here with us today and for the most part, he is happy. I will always regret and hate the fact that making that choice ruined his body in ways that I am sure we have only begun to realize. I hate the fact that that protocol was our only choice at the time. I guess we could have refused treatment and had CPS take him away. The sick fact is that while they say you have choices, you do not. Things have to get really bad for you to "have choices" in respect to your child and cancer.
I am so thankful that his life was spared and that I was and am able to watch him grow up and see that he has my same personality. This was not evident two years ago. I knew he was special, and we were bonded in a way that I have not bonded with the other kids, but I never knew exactly why. That will to live, to survive, to overcome the odds is something I want to capitalize on in the future. His spirit is determined to live, he has proven that. It is not something his mind has ever thought about, such as, "should I choose to live or die." It is not "to be or not to be," it just "is." He lives because of something deep inside of his very core, his spirit, which does not listen to reason, doubt or statistic. I certainly will never tell him otherwise or give him ever a reason to doubt his existence. I will give him all the tools I know of to help his body fight the fight, even if his mind has no concept of what he is really doing inside. When you take the time to take it all in, everything that has happened, all he has survived, it truly is an overwhelming miracle. In my heart I feel like we will look back upon this time when we are years down the road and KNOW that we saved him. We already know in our hearts that our choices have saved him, improved his life as it stands now. But I just have a feeling inside me that all this sorrow will one day be something we are proud of. Proud because we overcame it, we survived it, as a family who is united in who we are and what we believe especially because it is NOT the norm. Someday I will have to explain this to Samuel and I want to do so in a way that makes him feel victorious, not victimized.
Mark and I still talk everyday about when we can be done, as far as further poisoning. At this point, his best defense is his immune system and I am tired of building it daily just to go let someone inject poison and undo all the good. They obviously don't want to just "let us go" so again, it is all about diplomacy and proving that this treatment is crap. It is like weaving your way out of a tangled web. You have to be cautious so as not to tangle yourself further in. He is fighting cancer daily, on his own. Treating cancer by poisoning is NOT fighting it. How can you fight something with NO immune system? How do you manage to NOT get sick with no immune system? I guess we are all under the impression that our body cannot fight it by itself so why not just let poison do it. Let's make the job harder by poor nutrition starving our bodies of anything that might help them out. Let's microwave our food so that we can get radiation daily, a proven carcinogen. Let's not be accountable for any of our actions. Let's blame it all on cancer, certainly WE are not responsible for getting sick. My cousin told my mom that chemotherapy saved his life. No, it did not, it helped kill him ripping his organs and body to shreds. It might have prolonged his misery and gave him a longer life and I am sure he believed it did. Certainly HE did nothing to save his own life so in the instance where you are unwilling to make any changes, I guess chemo is better than nothing.
The time between Valentine's Day and Easter when all the Easter toys hit the store will always remind me of Samuel's diagnosis. He was born into the perfect season because he can see ducks galore for the next month. We can pick him out the perfect duck for his birthday, every year. Two years ago, Mark brought home some Easter presents for the kids. Kaysha and Daniel got baskets. Anna got a pink bunny. Samuel got his most beloved duck. The duck that has been with him through everything. Mark sure did not have a clue how important that duck he picked out would become. The only thing that is almost as well loved and traveled as that duck is his aquarium music box which played Twinkle Twinkle Little Star over and over, at least a thousand times it would seem. For the last two years we have looked for another duck to replace his well loved one which is now tattered, torn and just not cute anymore. I found one really similar, same face, bigger body yesterday. He is very pleased with this new one. Dragging it all over yesterday and hugging it. It seems like the grown up version of his older one, only newer and cleaner. Easter is one of those holidays that will always haunt me as well since that was the last time we got photos of him before the diagnosis. I will never forget him hunting eggs, that was the first time he did that. But looking back, we know he was sick on that day. The bruises were evident, and the bone pain associated with leukemia was also evident. Those pictures that appear "cute" to the innocent onlooker are sickening to me.
Well, since I am so "happy" today, I will end this with thanks to you for always checking, praying, writing and sending love. Samuel would not be here today without your faithfulness. Much love.
3/8/06
So, Anna turned two and she did not get leukemia for her birthday. Not that I was concerned about it at all, but it has been over 5 years since we celebrated a 2nd year birthday and it is something you think about, more than once and reflect on the milestone. I don't know how many years need to pass before I stop thinking about Samuel's 2nd birthday and how he got his first body destroying chemo for it. I guess at least all the 2nd birthdays are now over in this house so it should get easier.
Samuel is having butt issues again. It almost looks blistered and has for the last few days. It has hurt to the point of him not wanting to sit down and tonight's bath to clean it was good for a massive screaming fit of pain and agony. Something he is eating is doing it....table food. Again, I have come to the conclusion that he would be better off not eating ANYTHING different than what goes into his tube. It is just cause for misery later. Thankfully, he does not ask to eat much, but that means limiting even more the scarce amount of food he will actually put into his mouth. Note, above, he had no problem eating cake. He hasn't had massive amounts of diarrhea, but what is coming out is burning him, a lot. Only compounded by the fact that he refuses to GO in the toilet. That only adds insult to injury.
So this week, Kaysha commented to me that she thought Samuel's butt would get better when he did not need a shunt, a port and a tummy tube anymore. So part of her schooling this week was to talk about all the parts of the GI tract, and how the none of the things she mentioned mattered when Samuel has had his colon removed and has had so many abdominal surgeries that we don't know if it will ever be completely okay. We talked about what the colon does and why he poops all the time, why it is so messy, so stinky, and just awful. We talked about what caused it, and how it relates to the rest of his life. All she remembers about him getting sick was coming to see him one day and he was happy playing with this rubber ducks and then coming back on another day and he was comatose. I just found out that the neighbor kid has been calling him stinky butt when I am not around. It kind of annoys me because depending on his mood, it can hurt his feelings. And it is NOT his fault that he poops a lot. I am just glad we never intended him to go to school or anything like that because it would be a really hard thing for other kids to get.
I have often wondered what the consequences of all this will be for Samuel as he grows up. Someday I will have the same conversation with him as I have just had with Kaysha. When Kaysha was just a bit over three years old, she had a corrective eye surgery. Just in the last few years she has been able to tell us about waking up in recovery, and what was said and done, etc. So I know Samuel will someday be able to talk about things with us and it will be interesting to see what he recalls, and how he feels about it. Lately, I have seen more emotional outbursts when he is NOT overtired and I wonder what the underlying cause is. Or maybe his butt just hurts and he is grumpy about that. That sure seems to have ruined his days as of late.
I looked at our next calendar date for clinic and it falls just before Easter, which figures. The next week is just before his 4th birthday. So I think I will have them push it back another two weeks because I don't want to ruin his fun for either date. His birthday, if not anything else, has become very sacred. And it seems to be two days long, taking the 20th and the 21st. It has become hard to differentiate between which is his birthday and our anniversary. Suddenly they seem like one in the same. This year, Mark and I will celebrate 10 years together as husband and wife though we have been together for almost 12. He will tell you it feels like 20 years. I am thinking that April is just a skip month for anything Oncology from now on. This month has been just ruined in the past and as we approach it this year, I just want to have a nice month, not a crappy one. It will be hard enough to go through all the memories without making new ones that just piss me off more. I think it will always be a month we enter with some trepidation.
We have had a few early spring like days here and certain memories, perhaps flashbacks have really tried to grasp my thoughts. For awhile it was Samuel's birthday, his diagnosis, his first spinal tap and PICC line placement. This was the day we left for the proceedure to see our new apartment across from the hospital. I remember walking out, leaving him, feeling completely lost in the hospital, outside and like I cut my heart out and left it in the ICU,. I remember walking outside, it was a nice day, a nice spring day. Everytime Mark would come in and I would go to the apartment to shower, or nap, it was always a nice day. It would be the only time I would leave Samuel's room and go outside for months. I never ever left him alone. Either Mark was there, or my Mom, but he was never alone during the day. Nights in the ICU were different because we were not allowed to stay so I would stay until I knew he was asleep for a few hours, usually about 11pm and then have security drive me and Anna across the street. Yes, security had to transport you at night, the neighborhood was that bad. For whatever reason, that first day has really invaded my thoughts. That was the day we agreed to treat, the day that got us to today, with life as it is now. I am sure my mind is thinking of it for a reason, I just don't know it yet.
During that time, my friend Keila brought all the kids some gifts and one of which was a CD set for Anna. I opened it, but I don't remember if I ever listened to them. So now that everyone is so into music and dancing, especially Anna, I got them out and gave them a listen. One of them is all classical beautiful songs with birds, rain, storms and outdoor noises all mixed into the songs. I fell in love with it. It reminds me of Samuel, especially the birds. All the songs stir my soul. I don't recall if I ever played them in the hospital, but in some ways they remind me of it. They seem familliar, but then again they don't. They make me think I should have played this CD for Samuel, with all the birds, the sounds of the outdoors. Except, if I HAD played them, I would not be able to listen to them now....so it is bittersweet. I know that last year I really did not have time to think about all the things that happened too much because there was still so much happening so perhaps this will be the year I deal with it in my mind. It is funny that my mind keeps reminding me of the first day's events. If that is where it needs to start, we have a LONG way to go.
We are busily rearranging the house, packing up, throwing out, and all that fun (not) stuff. Mark and I remember what it was like to move here when we only had about half as much stuff and half as many kids so we are NOT into clutter, and keeping crap that we just have to pack around. Life is too short. One of the things we did pull out was some of my old video stash. Kaysha and I watched my old highschool gymnastics tapes and boy did we laugh! No major house finding yet, still browsing the web and talking over where we would want to go. The hospital location really dictates where we can go which sucks. If we were not tied to the hospital on a monthly basis, we would go to Eastern WA. But since we are, we will need to stay within a decent driving distance away. Something else that has plagued my mind is all that time we were literally stuck in a hospital room. What if some disaster happened? What if one of those fire alarms was REAL? How do you get a kid in the condition Samuel was in out? At that time, I did not know, but you can bet I do now. What about earthquakes? What then? It would just be an awful place to be stuck in the event of a catastrophe. How tied do we want/need to be to the hospital? That is a question I ask Mark on a daily basis. It is a hard question to answer. The fact is, that if we are in a position to NEED a hospital, that will mean that things are bad for Samuel. Hospital means that he will be needing some surgery again or has some really bad illness, in which case, we would be in Seattle, not here. I guess I think of the times when his gut was filling up daily with CSF and all the emergency trips to Seattle for surgery back then and wonder if we are REALLY done, like I feel we are. An hour trip is too long for a kid in the condition he was then. I guess we could just go to a local hospital and be helicoptered in if we lived way too far away. In Seattle, I had rooms where I could watch the helicopters come and go. I remember the first one coming in, my Mom was with me. We both watched in awe and amazement, yet felt sick inside because we knew that someone coming in like that was not in good shape. As she said, "Pray for them, they need it." I would really prefer not to have that type of ride in. Just a few days back, Samuel came out to the living room rubbing his head saying, "I hurt my shunt." Great................just a matter of time before conks it and does something bad to it. Of course, we could live wherever we wanted if we were rich, but we are not so that also limits how close in we can be while still getting what we want. I do know this, God has a plan, HE has it all figured out so I won't dwell on it too much I guess. You just cannot go through everything we have and not have this in the back of your mind.
Well, that is about it for now. Thanks so much for checking in on us and keeping Samuel in your prayers. Much love.
2/27/06
Two years ago tonight, I went to bed with Anna in my tummy. In a lot of ways, it seems like yesterday. In other ways, it seems like it has been five years. I went to bed thinking I would be pregnant forever. The 28th was my due date. I had never carried a baby past 38.5 weeks so I was feeling WAY overdue. Anna's birth was as close to my dream birth as I will ever have. It was surreal, awesome and hilarious too! There is always something funny we remember about each birth and hers was definitely Mark's calling Toni as A.D. fired out like a torpedo. Of course, Mark doesn't think it nearly as funny as I do. Well, this year it feels like we might just be picking up where we left off in 2004. She was born, it was nice for about 7 weeks and then.....now almost two years later it feels like we might be finally putting the pieces back together.
Well, Anna had her party on Sunday night and she was quite the little princess. She enjoyed it tremendously and says "pesents" instead of presents. It was hard to tell who was getting presents since Samuel and Kaysha helped open and play with them. Anna blew out her own candle and made a nice mess with the cake. All in all, she was a little doll. Delma would be quite tickled to see her and how adorable she is.
Samuel's GI issues have finally cleared up. It has taken so long that I think it may have been a mechanical thing. Normally, once I realize there is a problem, within 48 hours i can resolve it. But this one took several days and may have even been chemo related since things were pretty much out of whack since then. Ever since he stopped puking, he has been eating non-stop. Mostly cereal which he carries all over the house with him. This is new, not something he has done previously so either he is growing (still) or he has a tape worm. I am just kidding about the latter, but he only eats like this when there is a GI issue, and now that there isn't and he hasn't stopped, I wonder. Other than that, he has had a nice week.
Well, my kids had an interesting week for "home" school. In addition to the usual routine, Kaysha and Daniel are learning drywall skills, and will be soon painting the walls. They think it is fun, LOL! Kaysha learned how to use the Sawsall and helped cut up the tree that fell in the backyard. Kaysha has been really helping out with chores, and takes care of A.D. like a mommy. We were watching a Wrap DVD the other night showing how to get your baby in and she noted that a certain position was great for nursing. I think it is cool that they just think it is normal to wear your baby and nurse them. She is old enough to carry that on into adulthood. We sure were not learning these types of things at their ages, that is for sure. What is nice is that they want to help out and they want to learn and Mark is home to teach them. Both of them are really maturing nicely and we always try to find a time were we can do something everyone enjoys together, whether it be watch a TV show, or listen to music and dance. A.D. thinks she is helping out by putting her hands in wet paint and touching everything...hmm. Samuel is all about Samuel, and entertaining himself, and everyone else.
Well, another busy week is in store. Cleaning, painting, moving out the old, packing up stuff and of course working. I hoped to be moved out of here by my birthday, ha, but maybe by then we can at least be officially looking. Well, that is it for now! Much love and thanks to you all for your continued love and prayers.
2/24/06
Well, the MRD is back and we all agreed that the results are worthless to us. Our Onc told me that the last MRD showed 2% abnormal cells. Now either I heard him wrong, or he understated it because last time I was under the impression that there were 1% abnormal cells. This time it shows 1.2% abnormal cells, supposedly down from the 2% previously. In any case, the number of abnormal cells is going in the right direction. These did not declare themselves as leukemia, but did not show that they were not either. We agreed that we would not do a bone marrow again, ever because since were are not "officially" treating, it doesn't really reflect anything measurable. Acute leukemia would be exploding not fading, and that this point, I don't need their tests to tell me what I already feel to be true in my heart.
We talked about the spinals, how much benefit they are at this point. Samuel's CSF is still as normal as ever. But how much good is the chemo doing there when it is expelled into his system within a few hours? No real answers and I get the impression that I know more about it than he does. Samuel is still getting systemic treatment but instead of IV, it is routed through his head first. Well, I again, told the Onc that I could just walk away now and be done and have no regrets. He still feels concerned about relapse so does not feel comfortable doing nothing. he was open to making a definite end date however so we agreed that Samuel would be done with spinal chemo in April of 2007, this being the three year anniversary of his diagnosis. Boys are usually treated for three years so that would put us stopping at that time as if he had never missed any chemo ever. He was okay with this and said we could do another MRD at that time if we wanted to check at that point but Samuel may always have some abnormal cells in the marrow, so it would not be very definitive or change our minds as to poisoning him again. I said if we came in every two months, that seemed okay, but coming in ever three would be even better. I am sure it is all up for negotiation, but nailing down a DONE date is a very nice thing indeed.
We will continue to "treat" him our way, with things that not only help his body's defenses, but herbs that are known to kill off chemo resistant cells for the next few years. These things do not harm the body and actually target abnormal cells. I started giving this herb to Samuel when I go the results of the previous MRD. Now, knowing that the abnormal cells are lower, I feel confident that I am not wasting my money on it. The fact is, we ALL have cancer in our bodies every day. A normal immune system kills it before it goes out of control. That is our hope for Samuel. It is my personal hope that in five or so years when Samuel is considered "cured", that some compassionate Onc somewhere might actually be interested in what we did. Just in case a family comes up who makes the choices we have, we can prove that it can be done. As it stands now, no one is really interested, which is fine, I don't much care. I talked with the Onc about alternative treatments a bit today, but of course, he doesn't know much and states that while there are lots of random studies, it is all unproven, blah blah blah. I told him that I did not mind in the least proving that extreme health can work. There was one point in the ICU there in 2004 where one of the IV team was commenting on Samuel growing up and curing leukemia because of all he has been through. Curing his own is a great start.
So Samuel is doing well, happy again and playing. His gut is a little out of whack however. The more table food he eats, the worse off he is. And when his gut is off, he just wants to eat nonstop so it is difficult to get things working well again when it cannot rest. He has lately been trying new things and even ate a small piece of broccoli. He ate a strawberry as well. Of course he said he did not like them, but the fact that he put them into his mouth is an awesome start. He is pretty happy with his tummy tube which he showed everyone in Home Depot today.
I feel happy, I feel peace. I feel like my Dad used to about a car he used to own. It was this junker Datum Station Wagon. Well, it was ugly, but it ran great! It never broke down. He used to comment that he felt like he should throw money on the ground for all the people who bought newer cars that became money pits due to all the breakdowns. I feel like this about Samuel. I feel so grateful for his life, but a little guilty at the same time because there are so many kids suffering, losing their lives, and broken families trying to survive the cancer lifestyle. It just takes over your life. It controls your thoughts, steals your joy, and kills your dreams. I feel a bit guilty because I don't live like this. I am not sure why I feel guilty, as if we haven't and Samuel hasn't suffered enough, but maybe it is because we are free. Who did not watch the Olympics this year and envision their own children living their dreams? Doing something great, in their own right? So many families have children who will never live their dreams. It breaks my heart to know how many suffer all the time for a "cure" that is torture beyond the depths of hell. Right now, we live for today. Samuel's dream is to go see his chickens and feed his ducks. I think he actually dreamed he had them last night since he got up this morning and asked to go see them. As of late, a few people have commented to me that they are often afraid to read our updates. Fear of what, I don't know. I am sure I can guess. So for you who read waiting for the other shoe to drop, know this. Even if that day should happen, I will never regret letting Samuel live his life to the fullest. If he leaves me sooner than I expect, I won't regret allowing him to go on to heaven, a place the Bible says that our minds cannot even imagine half of what our reward is. Yes, it will be the hardest thing I ever do, without a doubt, but I will NEVER look back on today and regret our choices. I look forward to seeing our dreams come true taking one day at a time to get there. Until then, I will savor today, a good day indeed knowing full well that tomorrow is not a promise of anything.
Thank you so much for your love and prayers! May God bless you always! Much love.
2/19/06
Thank you for your prayers for my little sweetheart. They really do help. he has perked up a bit each day but I did have to have a talk with Kaysha and Daniel about why he is so crabby and mean right now. I don't lie to the kids, I tell them that what the doctors call medicine is really poison and when Samuel gets his spinal tap, they inject poison into his back which then goes into his brain and then into his whole body. I ask them if they can imagine how being poisoned might make them feel and while they cannot imagine, they do think it would make them feel yucky. I remind them of how they recently felt when we all had the flu, how when you feel rotten, everything is irritating. Samuel is so much like me in that even though he feels rotten there are so many things that he still wants to do in a day. So he is even more irritated because he tries to do them anyway despite feeling like crap. He was able to play outside for the last few days and distraction really does help a lot. He tires faster than the other kids and it is still really cold out but even despite that, he still wants to be outside ALL DAY. Coming in is usually good for a giant fit unless we can think of some way to con him in and make him think it was HIS idea. I am sure the neighbors think he is a brat. He stayed up in his room for most of yesterday again because he just could not cope with the family and it is not fair for the other kids to have to give in to his every whim. Today he has been able to join us all for the most part without incident. He is mainly mean to A.D. since she is smaller but last night and this morning was playing really cute with her again and being nice. I can tell he is still not up to his usual par, but he is improving. He is not complaining of pain anymore and is not puking either so that is a bonus for us all.
2/17/05
Thank you for your prayers. Samuel had a rough night last night and ended up in our bed where he slept magically fine after fussing and bawling in his bed. Samuel was better today, meaning he was able to eat a little and play a bit, though spent the majority of the day in his room due to being irritated by his siblings. They all wanted to play games, etc, the normal day things and he did not like the noise, or someone had a toy he wanted, or they would not play his way, etc. Just overly irritated. I finally took him to his room and hooked him up to his food pump and let him play there alone. He likes spending time alone so that seemed okay to him and made for a lot less fighting and crying around here. He did not complain about his leg/back today but his butt is still pretty sore so pooping was screaming agony. Obviously, he is still not himself yet. It is only magnified when he has been doing so well. We all kind of felt "off" all day today so I hope that tomorrow is a better day for us all. We have been having a wind storm here and below freezing temps so the power has went off and on, a tree fell in our back yard and the porch gate blew off the porch. We rarely get wind like that so hopefully it passes though is supposed to continue for the next day or so. The kids are bored and we need to get out of the house to do something fun soon.
2/16/06
Things have not improved for Samuel today. I would say that this is the worst day he has had this year. His hip and leg are very sore from the bone marrow aspirate. He has spent most of the day crying or just uncomfortable. Ibuprofen only barely touched it. And the nausea really got him this afternoon to the point where he was holding his mouth and crying afraid of what was going to happen. Thankfully, we did make the trip back to Tacoma for the Zofran. I calculated the cost per pill at $34.00. I gave him one and within five minutes, the nausea was gone. Unfortunately, the Zofran speeds up the gut so he has a sore butt today from diarrhea. I told Mark today that this is to be the last bone marrow period. What good will it do at this point? Not much. The spinal chemo really seems to have gotten him as well and I just keep thinking that I am glad we don't pile that little amount on top to three others like we are "supposed" to be doing. I am pretty annoyed with how this one has turned out and we have done some more discussing about when we can say that we feel he has had enough spinal treatment. Samuel hasn't eaten anything today. He asked for things, we gave them, he immediately was sickened by them. We went on a trip in the car and he usually wants to get out, but he just sat there looking sick and did not want to leave the car. Mark and I are both feeling very disgusted tonight and hope he feels better tomorrow. It is like willingly giving someone the flu with the vomiting, nausea, diarrhea and body aches and expecting them to understand it because it "might" kill cancer cells. He feels lousy and his attitude is rotten about everything....understandably. I don't see us making it through the year continuing to do this to Samuel either. I think I have seen so many "rotten" days that just adding even one more makes me feel sick as well.
2/15/06
It has been very busy here and a lot of things are happening/going on.
Samuel continues to be radiant as reflected in today's labs.
WBC 7400
ANC 2800
PLT 389K
HCT 35.4
He is still growing like a weed and is almost 102cm tall and still averaging 17.5kg. We had a really early day, getting up at 5:30am to be there at 7am. It is worth it so that he doesn't have to be starved all day. His spirits were good this morning and it is always very easy to tell that the staff is not used to seeing kids feeling and acting so well. Everyone was quite refreshed. They were also happy to know that the pooping issue has improved remarkably and did ask what we did....which is a switch since usually no one does.
Samuel's spinal tap went well, meaning it did not take forever to drip and did not take three pokes to get it. We had another of our familliar ICU docs doing sedation today who also remembered us, though it was a bit cloudy. He thought Samuel was like three months into chemo and could not believe it has been almost two years. He looked over all his scars and asked if "they" did that. Yes, THEY did. Children's simply reopened them a few more times. He asked where we were in the protocol then and our Onc was not quite sure how to respond. He basically said that when Samuel gets chemo.....and the ICU doc finished his sentence saying....something bad happens. Well that about sums it up. It is really interesting to hear the chatter about MY child and the relaying of history by our new Onc who obviously still doesn't have it down. I had to bite my tongue several times so as not to make comments that were probably TOO rude. It was an effort for sure. Our Onc wanted to look at his butt today but apparently Samuel gifted them with a lovely surprise. It was pretty hilarious since both docs were suggesting that the other "did it." I told them that that was their reward for such fine service.
The bone marrow did not go as well this time. It took three tries to get marrow out. Poor Samuel really noticed the pokes. He was snoring up until the last one where he cried out and moved away from them. It was sad, but he doesn't remember it. He only remembers getting his port done. So the MRD has been sent for again. Mark and I could really care less as to the results this time. As he said so eloquently, either Samuel will go on with life, leave "treatment" behind, or he will relapse and die. We are doing all we can do. There is nothing more "they" can do. But our Onc did ask about 6mp today, which was annoying since it is NOT okay to let him get better...finally, and then make things worse again. He commented that he "had to ask" and I responded that our former Onc could not take no for an answer either and that was why we left. I told him that I understood that if he wasn't "doing anything" that he did not feel as if he was doing his job, but that I am doing a lot, and things I believe in and that needs to be enough. I talked to Kristina for awhile after we had gotten home about this crap and I am always glad that I have friends IRL who totally get how we feel about chemo and how it relates to quality of life. And on an even higher level, life on earth vs. life in heaven. Why we would choose to let our child go on to a place he could be free of poison and cancer, and why we would not and will not be selfish enough parents to doom him to a life of dumping poison into his body on a daily basis so he can supposedly have a few more months, years whatever to live. . It is NO life. I wouldn't do it to myself, and I would not wish what I have seen on my worst enemy....assuming I had one. As Kristina said, "I just cannot imagine watching the IV dripping that in." Well, I never got used to it and I still feel sick over a lot of what was done. I am just glad we have today, we are here now and as the ICU doc said, "i am surprised that after everything he has been through he looks so good!" Yes, things are good! Not great, still a ways to go on that but we are heading in the right direction and we are believing God's promise of healing and believing in our very own miracle baby. So as it stands now, we don't return to clinic for 8 weeks, so April. How nice for us all! We will hear back on the MRD in a week or less. Mark and I are now talking about how much longer we should do the spinal taps. We shall see.
One major thing was overlooked at the clinic today and is really just inexcusable. They forgot to give him an IV dose of anti emetic. I just assumed they did since the chemo and the anti emetic usually go hand in hand. Well, they did not. By 1pm, Samuel was puking everything up. I went down to get him some Kytril and he puked it up as soon as I pushed it through. Not good. It was less than a teaspoon. So I called the clinic to find out about if he had gotten it and he did not. I asked if they could call in the oral dissolvable Zofran for us since he only has to let it melt in his mouth. They love this stuff at Children's, but apparently like Kytril better at our new clinic. They called it in but we have to pick it up there tomorrow since our ins doesn't pay for it anywhere but the hospital. I did manage to get some Zofran liquid into Samuel and he has been okay since but obviously he will need doses every six hours for a few days. How extremely annoying! He has puked four times in the last few days. I really wish I could send these Oncs a bill for the carpet cleaning. Thankfully he has two quilts for his bed so that one can be clean at all times. Maybe he should just sleep with a bowl. Samuel said his head hurt and his butt hurt, the place where the 3 bone marrow pokes were done. But he was afraid to take medicine to help it feel better because he did not want to puke.
So, other than today, things have been going great and we are trying to jump back into life with both feet. Everyone is happy and eagerly anticipating moving to a new house. We have begun getting our house ready for sale and looking at property near the ocean. I am really excited about that location. Property in the area we vacationed last year. The Rainforest and Ocean both in easy driving range. We realized that the only thing holding us back from moving out is us so things have kicked into high gear to get done. No time like the present. Samuel got a new bedroom in all this fun. He is now in my sewing room and my sewing room is now in his room. The old sewing room is huge so he has a room he can now play in. My sewing room "might" stay cleaner...we can always hope. But the house will show better with these changes and we have moved the really heavy machines downstairs. Kaysha and Daniel have been really helpful in getting stuff done around here too and it is nice to have the extra hands. They are pretty excited. Mark and I feel like we will fall in love with any place with a real backyard. Samuel wants ducks and chickens....of course!
Thanks to Kerry for turning my thoughts/regrets/sadness for Anna around with your words.
"I know that Anna's first years will haunt you for more time, but I think if you ask many mom's/dad's, they have less time with the kids after #1 with work, etc, but with an illness, that really makes it much tougher, but maybe Anna's role was to be a little girl for Mark while you were off with Samuel, and she was there for your older kids to dress up, play with when Samuel wasn't feeling well, etc. Just think back to your great birth story of her and remember that time, then wonder where the time went, minus all the sickness at your house; concentrate on that even if you had been there every moment of the 2 yrs you would still wonder when exactly she became a young lady and left babyhood...Ok, that's very simple sounding, but did you feel a tiny bit better for a moment? That was my goal!"
No, it wasn't just simple words. It makes complete sense. Without Anna, my older kids would have been completely lost in a hospital room where their brother did not even recognize them. She was always happy to see them and they her. It would have been so much easier without her, but yet, I cannot imagine it without her. That weight was lifted, thank you!
Kristina sent me her own wiseness on this as well and from a completely different angle. "it is cool that you are recording all of your feelings because it is always better to be real and honest with kids. Anna will grow up fine, not scarred by the "neglect" of her first years. She will be fine because she will grow up knowing how it really was and that it was just a matter of fact. The kids that are screwed up are the ones whose parents try to make things seem/sound better than they were. The kids feel some kind of hole inside and can't figure out why and everyone makes them feel like it is their imagination. You'll be like, "ya, Anna... we totally put you last and felt overwhelmed for your first year or so. that is why you are so independent now and strong. I am proud of that part of your Spirit." and she'll be like, "ya, man... i'm cool and tough cuz I got through that." kwim? She'll feel like that is the sacrifice she made for her big brother - and that it was worth it and necessary - AND she will proud of herself that she did it and came out better for it. If you play it right, she'll be a hero, not a kid to feel sorry for. The biggest thing you can do for her is let go of the guilt. This is your life. This is what happened. That is how you handled it. You got through it, now it's over and things are great now. done. PRAISE GOD!"
I don't think I ever thanked you for this note, and it still brings tears tonight. Thank you!
I want these to be part of the journal to remind me of when my mind was suddenly changed.
Thank you for checking in on us! Much love to you!
2/6/06
It has been a strange few days. Worthless for getting anything done. I woke up yesterday with vertigo. I haven't had it for about two years. The last time was probably about this same time of year, but I was pregnant with Anna. We did not know what to do about it then, but I sure did yesterday. I got up to change Samuel's usual poopy diaper in the morning and almost fell down walking in and leaving. It got worse before it got better. I hate mornings as a rule and am pretty worthless until after 10am so taking a medicine that makes you tired is not my favorite thing to do. But it did the trick and I was able to function by noonish. Mark felt yucky yesterday, just not with vertigo. Samuel then started to act a bit off and by bedtime, he was a really hard sell. We went to bed at about 11:30pm and I usually don't sleep really well until he is down. He came in a few times after pooping to see if I would "fix him." By about 1am I finally officially put him to bed. A.D. was up at 2am screaming so that was another trip upstairs to nurse her and get her back to bed. About 4am, Samuel was up with diarrhea, then again and again and again. In the middle of all this pooping, his butt got really sore so he was just laying in his bed crying about it. Ibuprofen did not seem to help either so he was either in bed with us, or in the tub or just in his own room crying. Not sure what caused it either but it was way too reminiscent of a few months ago. How did we ever manage that without a break? We gave up on sleep about 9am after everyone was basically up but us. Samuel pretty much had no sleep all night and conked out at 10:30am.
Home Health Care came out today. They wanted to come yesterday but we felt too icky so put it off. Today seemed an even worse day, but it had to be done. The lady who came out spent quite a bit of time talking to me by phone. She remembered us from 2004 when all this mess began. We did not officially meet, but pretty much everyone knew of Samuel back then. We found we had a lot in common as far as our views of medicine in general, doctors, hospitals, etc. Mark got his first lesson in accessing the port, like he did not already know somewhat what to do, but he did not actually do it yet. I am not going to do this either. Too much to see, I cannot see, so no need for me. Samuel napped through most of the visit in which we did lots of paperwork. LOTS of paperwork. I don't recall doing this much paperwork before but I guess that was because we did not have almost 2 years of medical history. She did a physical drawing of Samuel's body, with all the scars, hardware, etc diagramed. She about cried a few times hearing all the crap we had endured. All the the things he has endured to be with us today. She agrees, he is a miracle. We talked about several of the docs we had in common and sent her away with a pic and web info for our Infectious Disease doc whom we have not seen since we left there. He will be really surprised. She said she will find him and give it to him and let him know we were thinking of him. He was a pretty good guy when all is said and done. It was a nice afternoon but took three hours in all. So the whole day was shot for anything else and we are just feeling braindead anyway. But now we have the ball rolling. They will call and check in every month to be sure of port care being done, and also have a service we can call if we ever need RN advice or need to go to the ER. IF we call them first, they will have everyone notified of our coming so we won't be waiting around when we get there for hours. They will be expecting us. That will be nice, not that I ever hope to need it, but the last ER visit we had when we were not expected was 10 hours, 4 kids in a 10x10 room. Horrible. That was when Samuel had 2.5 liters of CSF in his tummy and was literally ready to explode. The door is open to any palative care now, should we ever need that. All we have to do is ask. Their job is to keep us OUT of the hospital for any lengthy stays. These are people on our wavelength for sure.
Samuel has been fine today despite the night's events. I wish I could take a nap at 10:30am. He woke up a bit crabby but perked up nicely. He likes visitors and does great with medical care these days. He liked looking at the body the RN brought today with a port and a hickman in it. He was able to see what his port looks like inside his skin and he touched it. He did just marvelous getting his port accessed and flushed. I am so proud of how well he sits, like a big boy these days. He hasn't asked to go to the hospital these days which is nice since he used to ask about going a lot. I guess he finally has had enough to do around here he forgot about it. We do go back in on the 15th for IT chemo and another MRD. But I am not thinking about that right now!
Last year this week we were making major decisions about whether to treat, not treat, hook up his gut or revise the stoma. I am glad to be home, not inpatient. That was one of the most awful stays we had, at least until we went to the Surgical unit. What a mess! Glad it is this year and we are thinking of doing more fun things and a lot less chemo. I feel total peace with our choices. I never had that last year. We hit plateaus of okayness but they never lasted long because they were always followed by problems, bad news, and surgery. Our RN left today telling me she just got a feeling about Samuel that we have made the right decisions regarding his treatment, or lace thereof. A feeling that he will be just fine. It is always nice to hear this from a person who confessed that they believe in God because I just feel like it is the Holy Spirit speaking through them confirming what we feel in our souls. Samuel is radiant! It is so cool that a complete stranger would notice.
A.D. will soon be two years old. It is hard to believe. I look at her and picture Samuel at this age. She is a big girl, but when you think of all Samuel has endured, and think it started at age 2, it is really hard to believe he was that small when we started this. He has grown up a lot yet everyone was cheated out of a lot. A.D. especially. I feel really sad for A.D. even still. It has been hard for her to find her place with us. Probably not knowing where she lived for about a year, and being dropped right in the middle of nursing, left to herself because I just could not care for two at the same time and Samuel needed me more. She was so awful at times in the hospital, yet when I came home with her, she was worse. I will never forget living in the apartment with her alone. I would pretend I was a single mother of one. I would try to imagine what it was like, we tried to get through the nights but the magnitude of what was really happening just overtook everything. I was glad to have her to hug, but at the same time, wished she wasn't so small, so needy, so little. I wished her baby hood away because I could not enjoy it. More and more now, I am longing for all those moments we will never get back. For months, Kaysha and Daniel hardly even saw Anna. When they did, it was always under horrible circumstances since it seemed every time they visited, Samuel would have some surgical emergency come up. When we lived in Seattle as a family in the hotel, this was some of the first times they were able to get to know Anna. She was just baggage on a very bad trip. It is sad, it was sad. We always said things would have been so much easier without her which is awful! But it was true. When I was pregnant with her, I always felt she was coming to be a friend to Samuel, and she has been. She has been with him through everything. I wonder what God's plan is for her because it hasn't revealed itself. I know I will look back and see it, but thus far, I don't. She used to be so small that I would lay her in a tiny spot in the top of the chair bed propped up on a pillow. Together, we made a T. I was the long part and she was transverse. A lot of the RN's still remember how we slept there. In that position, I knew where she was. She could not fall out of the bed. I could nurse her and put her back. She slept pretty well up until someone would wake up Samuel and then they would both scream. One RN could not believe I managed to nurse her through that and I did almost dry up once. Thank God I did not. I guese part of God's plan was that I have that milk to share with Samuel at a time he needed it most. A.D. is very smart, strong and has a will of her own. Everyone loves her and she is just a little doll. But how I wish that her beginning was different. She will have a party this year. Last year she did not because I think we were all too tired, overwhelmed and overexposed to people. She will celebrate being two unlike Samuel who did not on his second birthday. Instead, he was set up for the biggest battle of his life. It will be bittersweet for me. Fortunately I have a few more weeks to contemplate it and get over the feeling of being cheated.
Well, I hope tomorrow will be a better day for us all. Much love.
2/1/06
Samuel is doing great! Another great week for him with five or less poops a day, and he only puked once...all over my clothes, but who's keeping score? We don't have to go back to the Onc clinic until the 15th which is only problematic due to the port which I would like to take care of, so I am working on getting someone there to assign us home health so Mark can take care of it when our appts fall behind. Honestly the only thing keeping me "honest" about calling the Onc Clinic is the port so that will just be a little more freedom we will have to not call or go in. At any rate, I am glad to have another two weeks away from there.
The longer I spend away from there, the more hope I have of a normal life. Everytime I go back there, I am reminded of what a hopeless place that is. How just by going there, any hope of being cancer free just deflates like a balloon.
We have spent the past week getting to know some new friends, and reconnecting with old ones. Almost two years has passed for us and it is obvious that the same amount of time has passed for our old friends. This does not seem to be as much a problem for Mark as it is me, but I just don't too much in common with anyone remotely close anymore. And I personally lost friends when Samuel got sick. People who couldn't deal with the bad new after bad news. Less helpful friends took a back seat to more helpful ones. I still have a bad taste in my mouth over some of those. Really makes you distrust people when you wonder what their intentions are. Maybe it is the Margarita I have just enjoyed or it is the nostalgic music Mark seems to be enjoying singing to us all tonight, but I just feel incredibly sad. He is playing music that was popular in the early years of our marriage, back when life was simple. I have been listening to music that is from my late high school early college days. Music that reminds me of riding my first horse, before Bud, carefree, or at least looking back I was carefree. I just want to ride free tonight!
When I think back to April 2004 and then up until now, it is like a warped tape. It plays fine until you get to the warped spot, then it either refuses to play, or it just sounds really awful until you get past it. Sometimes you have to pull the tape out and move it forward by hand to get past that area. Once you finally get past it, it plays fine again but not without alot of work, or in our case misery. Once a tape is warped, it is always warped. You go through that whole process anytime you get to that stop. I really feel like that part of our life resembles a warped tape we are just now getting past the bad spot. We have both talked about this a lot as we are trying to figure out what a normal life for us will be. Things with people are not quite right, that is obvious. It is almost easier to befriend strangers than it is to reconnect with old friends. Mark and my relationship is more solid than ever after all we have been though and the same cannot be said for some of our friends who haven't weathered anything close to what we have. It is sad.
So in the quest to get on with life, the person I consider to be my best friend on this earth sends me a copy of some TV footage taken of her and her family. I was really excited to view it and did so with my entire family. What I wasn't prepared for was the emotions I had while viewing it. I have never met Kristina. She is in AZ, I am in WA. We have been in contact by phone or e-mail since 2002. We talked every day for months in 2004. These days we e-mail and connect by phone about once a week or so. I have seen pictures of her and her family. Kristina and her youngest daughter are my website logo. I just never dreamed that when they showed her talking and interacting with the camera and then her family, it would be the closest thing I would get to meeting her. It really got me. All I could think was there was the woman who helped get me through the most horrendous time of my life. Here is the person who faithfully called me every day for months. Here is the person that I consider to be the best most intimate friend I have here on earth, and we are in two entirely different places in the country. I choked back tears! But of course the family was all there so I had to pretend to be normal. When Mark reads this, he will be really surprised! Well, the journal has always been a good place for us to touch base as a couple so here you go! I was really taken by what a smart lady Kristina is on camera. I have always known she was on the phone, but seeing it in person just solidified it. This is a person I could hang out with, yet I cannot. I don't have to explain anything to her, we can be ourselves and we "get" each other. There is no crap, no games, just friendship. I guess that like all other rewards we get in heaven, meeting her will have to wait until then. On a final note, the company who chose her and her family to be their spokesperson chose well. Kudos to you, Kristina! Your fame in life just continues! I am so honored to be a small part of it.
So we move on. Samuel is enjoying meeting new and old friends. He just loves everyone but A.D. who he has been pretty naughty to lately. It is nice to see him enjoying people, having fun, running around and just living life to the fullest. He really seems to do that too. But maybe all kids live life to the fullest. He just seems to do it better. And as for me, I just don't know where my place in this world is anymore beyond the walls of this house. We have known so much sadness that it is scary to feel anything else. I am still all about keeping Samuel alive and that is a lot of what I do today. I still research, I still work my ass off and I still want a vacation. About a month off would be a good start. The highlight of my day is schooling my children, seeing them learn new things, knowing exactly what they learned. Having complete control of what and when and how much. Homeschooling is something Kristina inspired me to do and I am very thankful she did. It took awhile to get into a good groove and figure out what would work for us all, but we finally got there. All it took was some quality time at home, which we finally got. We have been homeschooling since 2003 but had to take several detours. I don't think in my life I have ever gotten so much done in a day, but I do it, and a million other things every day.
And speaking of school, thank you to Sonlight and the anonomous donor who sent us $ for more curriculum.
On an even sadder note, might you all pray for my friend Audra and family. They found out this week that their son Keegan's leukemia is back. Their website is here if you are so inclined to put a name with a face. Please pray for them. Audra is the only friend who has kept in contact with me from an ALL list I was previously a member of for awhile.
Another I have been watching praying for a miracle for is Christi. They just got news that her cancer is back with a vengeance and they really have no treatment options other than for comfort.
It is just all so depressing! Tragedy is everywhere! Everyone wants to help when a dire need arises, but nothing helps really when you fear you might lose a child. What helped me, and helps me most is knowing that people are praying. That is about it. Don't get me wrong, knowing people care and are doing things to help does help, but deep down in your soul, nothing takes away the sick, sad, scared, empty, gut wrenching feeling of looming doom at every corner. That feeling sucks the fun and enjoyment right out of life. You don't enjoy anything. Good food is only so so, good coffee is just a lift to a lifeless day, thinking about doing fun things is only good for a good cry when the one you want to do them with cannot. New things are not fun, shopping is about getting the very basic things you need, visiting with friends is not fun because the conversation is always about what is wrong. , Going home is not fun if the one you want to be with is not able to be there. For us, only prayer changed things. For awhile I kept waiting and hoping that some person had the magic answer, or some way to magically help our situation, but I realized early on, that no one person could bear that burden, or make that kind of difference because they could not ultimately fix the thing that was really wrong.... my baby. For a long time, people brought us nothing but bad news. People who prayed were the ones who made the real difference as Samuel being alive today is nothing short of a miracle. I guess at times like that, when you realize that no physical person can help you, you have to look inside yourself. Hope that what you need to get through is there because you won't find it in any other human. In my case, I had Jesus. That was the strength. I have always been glad to have had that foundation. If you look inside yourself and find no hope, no strenght, then you may as well forget it. The way of the world will never suffice. Nothing makes life and it's purpose clearer than living with the fear of your child dying. Someone told me that we don't have a guarantee on any of our children's lives and I agree that that might be true, but unless you have literally sat at your child's bedside envisioning their funeral, you just cannot even get it. Those words just don't even register with me from someone who hasn't walked the walk. It is a turn off. This is probably what my whole problem is in life right now. I just cannot connect with people who don't get what we have been through. Maybe in five years it won't be so fresh. Or maybe it still will be. You can drop a glass vase, shatter it, pick it up and glue it back together, but it will never be the same. There will always be those little pieces that you cannot find. There are always little peices you sweep up and throw away. It might look whole when fixed, but you know it isn't, no matter how good it might look. If you are on the outside of cancer looking in, count your blessings. At any moment, your life could change. What is obvious to me now, is that it will never ever be the same. I am trying to dig myself out a giant hole, at least that is what it feels like tonight. Samuel is doing really well, and I am going to savor every one of these days, memorizing them just in case I ever need to recall what he was like happy. It figures, he is doing really well, and I feel sad! I guess him not needing me as much is a good time to catch up with myself.
Much love to you who continue to follow our family. Thank you!
1/24/06
Samuel has had a great week. Now how many times have I been able to write that? A great week for Samuel means he did not puke, and he never pooped more than 5 times in one day. I even managed to catch some of them in the toilet, much to his dismay. He learned how to pedal his tricycle last week as well as made some new friends with the people accross the street. Yesterday was a really nice day here so he played outside for the first time in several months. With the exception of yesterday, he has been really happy. He is pretty much done with naps these days so it has been hard trying to get him into an acceptable schedule since he thinks he should stay up half the night. Yesterday I was actually thinking about us taking a hiking day again for the first time since mid last year, but during a regular market trip, Samuel ended up feeling yucky and complained about his butt. So I guess that idea will be on hold for a bit yet since if his butt starts bothering him, it is all over. His butt looks about as perfect as I think we will ever see it. I think we finally found the magic solution, wish I had tried it sooner but I could not afford to. Talk about a huge difference. The dark circles under his eyes that have been there since the last surgery have almost disappeared and he just looks radiant. He sleeps with us about every night now. If he doesn't start out there, he winds up in there by morning. He is my little cuddle man for sure.
All the kids made some new friends with the family across the street so now they have someone other than themselves to play with. Samuel really likes company and for people to visit him. He always cries when people leave and he likes the adults just as much as the kids. I look forward to being in a place where it is easier to entertain and have company. This place is just too small for most everything we want to do.
The Onc Clinic never called us to schedule a follow up so I guess I will have to call and remind them since we should be in there next week if only for port care. I need to make a list of things to ask while there because I swear I have forgotten. The other thing everyone needs to do is the dentist, only Samuel will need IV antibiotics before hand because of his port and shunt. And I am not sure how easy he will make it for a dentist these days either so that might just be really awful. Thankfully the dentist is in Tacoma too so no extra running around to get it all done. Considering everything, Samuel's teeth look really good so my hope is that there is not much that needs to be done.
Not much else to report, Restoration is in progress here and how good it feels! May we all praise the Lord for His faithfulness!
1/15/06
It has been a week of ups and downs for Samuel. He has puked, had diarrhea, been happy and sad, up all night and slept half the days away. I am thinking that if we moved to Hawaii, he would be in the "right" time zone. It is 6:15pm and he is taking his afternoon nap.
I honestly don't know what made him puke unless it was just overeating. He gave me about 20 seconds notice, but unfortunately it took me about 10 of those seconds to figure out what his problem was and another 10 to get him to the kitchen sink to puke somewhere. Of course, one barf was all over the carpet. Not sure what was up with the diarrhea either. Things are either going really well, or really badly. So one of these nights I was up all night changing diapers.
On the good days, he was only pooping 4-5 times a day. Wow, what a difference for everyone! It was so nice. I have managed to catch some of them in the toilet and even A.D. pooped in the toilet yesterday. My dream is both of them potty trained, or at least TRYING to go in the toilet. A.D. may give Samuel new inspiration. I think in a lot of cases, he is just being lazy.
He has ran around the house like a madman and taken huge daytime naps and I find myself missing him. A few days he refused to nap and ended up going to bed at 6:30pm and I found myself missing him. Kaysha and Daniel were playing a game in our room and gave up after a few minutes because Samuel wasn't there to play. It is amazing how he really is the center of everyone's lives.
I talked to the ND about the results of the MRD. His initial response about the abnormal cells is that 1% was nothing to lose sleep over. He would not expect him to have a normal bone marrow at this point. It will not return to normal for quite some time. I felt a bit down about the results, or lack of results for a few days. But as Mark says, the test was pretty useless in the fact that it did not tell us anything really, one way or the other. So I look at Samuel, he looks fine, he acts fine, his color is great, his energy is great. Aside from the pooping/puking neverending gut issues, he is doing fabulous. I could sit around and worry about it, or I could continue to do what I believe in and arm him as best I can. I choose to do the latter.
I savor every day. It seems that I notice more and more people who don't. It irritates me. Our reality is that if Samuel's body decided to allow leukemia to come back, he could be dead in a matter of weeks. Having that in the back of your head changes everything. No matter how much faith I have in God, in Samuel's miracle, there are always those moments of doubt. Those dark moments of being human. Maybe they come to remind me to savor everything, not just with him, but with all the children. Every day I try harder to do this. I am so thankful, while our family might not be perfect, they are perfect to me.
