4/21/08
Happy Birthday to my most beautiful Cutie in the whole world! While we are not mentioning that today is his day to him, we will have a party for him just as soon as he feels better. We expect that to happen soon.
Thank you to everyone who sent messages of faith and hope. They have been well received here. Our caregivers ave officially switched gears to death mode now and it is obvious. We have canceled our meet and greet with hospice for the time being. We are asking to start tapering the Fentanyl drip but find great hesitation in our caregivers. I don't want Samuel on this drug if he doesn't need it. How are we going to tell if he needs it if we do not wean off? Right now he is on IV meds all day and night nd he cannot even get up to play or do anything for himself. Laying down is certain death. He needs to be more free to move and keep his gut moving. Apparently Mark and I are the only ones who get this. We will be going to clinic Wednewday to discuss this and get PLT too.
On Friday when Samuel's labs came back and his stomach started bleeding, his gut stopped working and he was utterly miserable, I called my Mom to let her know what was happening. Samuel seemed to finally have enough drugs on board and was sleeping. Or so I thought. I left my Mom a message that it seemed like it was going to be time for Samuel to go live with Jesus Right after I said those words, he screamed at me, "I am NOT going to go live with Jesus, I am staying right here." She has those words now recorded on her cell message system. When she came in to see him Friday night, we talked about his words and his strength. It is scary to us to think that has will is strong, just as Jessica K. said, yet his body is weak. If his body continues to fail, his gut fails, his spirit will linger in it simply because it desires to stay with us. He could tarry in misery for a long time. My Mom said if that is the case, then we need to honor his wishes to get better because that is what he wants. We will continue to stand in faith for his healing. The Bible says to never lose hope. With God there is always hope. God gave me this baby now six years ago today and from the minute he was born, I KNEW he was special. He was our special child well before illness and will always be our special child regardless. Being sick did not make him any more special to us, just gave him the wil to not let go.
I have talked to him several times in the past few days about heaven and Jesus and not hurting anymore. Never being sick again, always being happy. He can leave this world and would never want to look back. He does not want to die. He might not understand heaven, but he does understand death. I told him that if he wants to stay, he will have to fight harder now than he ever has because his body is weakened. I told him that we would do whatever it takes to honor his wishes and continue to do what we have been doing all along. Ultimately, it is up to God. When my Mom and I got together Saturday night and took communion, in prayer, we handed this over to God. I have thrown everything I have into this fight. We have tapped every resource and sacrificed much to see him healed. If he is not willing to give up, we will not either. Underestimating Samuel's ability fo survive is like underestimating God's ability to perform miracles. Never underestimate God. Never underestimate Samuel.
With that said, today's labs....
WBC 46.4k
ANC 928
Blasts 83%
HCT 30.9 yesterday was 27.9...hmm
PLT 45k
LDH 892
Somehow he gained red cells? Okay,I will take that. Liver functions are almost normal, LDH s coming down. Still signs of tumor lysing in the chems which is good. Samuel's proteins are coming up strongly, a good sign that his gut is absorbing. He slept better last night than he has in weeks. His lungs sound better. We think his spleen is moving off the lungs and the gut too. He has been coloring and playing with the other kids while sitting on the couch. He has been laughing and had some pain as well. I still think the spleen is pinching nerves though. I put him to bed at naptime and we talked again about his life and the fight ahead. Then we prayed and after that I told him that every time he hurts or feels bad, he needs to pray, remind Jesus that sickness is NOT right, he is healed and we won't take anything less. I went down to get some of his meds and came back and he told me he had just finished praying for himself. I just love this child so much and am so proud to be his mom. His poop is looking better than it has in weeks and his tummy is soft and chugging right along. We continue to believe for our miracle.
My big kids take there SATs this Thursday and Friday. Please pray for them to do well in spite of what is going on here. We were able to school today and try to keep some sense of normalcy that we once had. They need that.
Please continue to pray for us as we walk the road less taken. God help us!
4/20/08pm
Special thanks to RN's Mary and Maria for the superb care and concern during our last stay at MB. You both made things much easier on our family. May God bless you both.
Heaven and Earth have been moved so that we could get home. Fentanyl PCA and all. We are happy to here of course but do not look forward to the hard road ahead. Whatever happens, it will certainly be an uphill struggle. Thanks for your continued prayers and kind words. They are appreciated. Please continue to pray for Samuel's spleen to shrink. That would change everything right now Much love.
4/20/08am
Today marks four years of this. Today is Mark and my 12th wedding anniversary.
We are still inpatient. After posting yesterday's update, Samuel had a 20 minute nose bleed in which he lost 200ccs of blood, that just from what he swallowed and was sucked out of his tummy. That is one way to get platelets fast around here. He also got blood. His pain was absolutely through the roof yesterday but with the help of our home health RN's who kept looking in, we have finally gotten it managed. Samuel is still on the PCA pump and it looks like we will have to go home with it at this point. That buys us another day here as our home health does not supply this pump so we will transition to hospice. I keep hoping and praying that we will get off the PCA and just be able to go home pain free without all this extra crap.
We slept better last night and it looks like the blood that Samuel ingested from the nosebleed has finally exited his body. I am still getting blood from his tummy though and we would really like to know what is going on in there but with counts the way they are, there is not much that can be done. He is peeing really well now and his tummy is really waking up and trying to work. Things remain slow though and his spleen is still a brick in the way. His WBC is down to 61k today with 87% blasts so while it has dropped a little, it is not all that significant other than it hasn't risen. His LDH is significantly down to 1100 from over 2700 so I would say the ATP is working. His liver functions have also dropped by half which means they are not working as hard so this is good news. His uric acid is higher today than it has been in the last week which means cells are dying even though there wasn't significant blast loss overnight. He is still being treated for high uric acid and it could be that the blasts are dying in the blood but just not gone yet. Tomorrow's labs will tell more on that front.
Samuel is feeling a lot better this morning and even colored a picture which was nice to see compared to writhing in pain. We have had great weekend RN's which has helped tremendously in getting through this horrible time. His vitals have really improved overnight and look more "normal" now as well. He is still having fevers which is just basically what cancer does at this point. He is sweating a lot off.
Mark is coming in with the kids. They are going shopping for Samuel for his birthday tomorrow but we are not mentioning it officially. I think spending your birthday in this condition is not worth a celebration so we will just do gifts and he will just think it is normal since he gets most everything he wants.
Four years ago on Samuel's birthday, we spent the day signing forms to start chemo to "Save his life: not knowing that it would be signing his life away. Tomorrow, I will meet with hospice to make end of life arrangements. What kind of birthday is that? I see no point in celebrating.
My mom came in last night so that she and I could have prayer and take communion over Samuel to remind God of His covenant with us. Sickness is not from God and is not right according to His Word. We agreed in prayer last night that God has to manage this situation from here on out. We believe He is a healer and miracle worker and we STILL have the living proof. Mark and I have done every thing physically possible to save Samuel and give him quality of life. I have no regrets about that. However, when our RN's come to ask if we "need anything" what comes to mind is a "do over." Can we go back four years ago today and do this over? Can we change some of the choices we never got back then? Could we save his gut? Saving his gut would save his life, of that I am sure.
In the end, it will be his gut that will kill him if it does not wake up and fully function right now. His spleen needs God's hand to shrink it. If this does not happen, Samuel will slowly starve to death because I cannot get the nutrients in.
Samuel has not given up. He fully expects to go home and get better. We will honor him and his wishes at this time so as long as he wants to keep going, we will do everything we can nutritionally to sustain him. Our conventional options are not options anymore. We cannot risk another ileus or drug problem. It is now up to Samuel and God to overcome what again looks insurmountable. But with Samuel, most everything looked insurmountable and yet, he is still here.
Please pray that God continue to light our path.
Jen
4/19/08
The past 24 hours have been the most hideous we have lived in a long time. Samuel's body is trying to die. His WBC hit 122k yesterday with LDH at 2200. His gut shut down and toward midday, his stomach started bleeding and bled for several hours. He stopped peeing and continued to swell. We chose to be admitted to get good pain control after yet another awful night at home. My Onc was bleak as he entered our room yesterday and I told him that it looks as if we are done. Samuel's gut makes the final call. I signed the DNR form yesterday so it is official. I talked to Samuel about going to be with Jesus if he cannot take this anymore. His suffering brought our whole family to it's knees yesterday. Again, Mark told the kids that Samuel might die and I had them all come in last night to be with him as his body was completely unstable. Samuel says he DOES NOT want to go live with Jesus. He wants to get better and live with his parents. His will to survive is what has kept him here all this time. My Mom was here last night and we talked about letting him run to Jesus and him not wanting to go. His will to survive would mean he could tarry on in misery for a long time. We don't want that. My Mom thought that if Samuel's spirit wants to so strongly stay here, then we should honor it as best we can even if that means living this hell longer. Last night was asked God to either give us a miracle of a complete healing with no more set backs, or take him quickly and peacefully. This cannot continue. It isn't fair to anyone. My kids are devastated and Mark and I are on our knees. We do not want to lose him. Not after all this. But we won't trap him here either if his body is just going to continue to fail. This has been hell on earth and many tears have been shed by all involved.
Samuel's vitals have become more stable as morning has set in. He is on a narcotic drip, not morphine with a PCA pump so we can just push the button for extra when needed. We can go home on it. His PLT dropped 40k this morning from yesterday with all the bleeding but his HCT holds at 23.5. Today his WBC has come DOWN to 66k from 122k yesterday. Samuel has hardly peed and only NOW just started to poop again after another 36 hours with nothing. He has literally sweated the blasts off. This child does not want to die. His will to survive is strong and as long as we have a gut that works, we will honor him in his fight.
We think that possibly the drug we gave yesterday may have caused this reaction over the past 24 hours. Thank God I only gave him a small amount. If it is going to drop the blasts and give us a chance to get this back under control, then I guess it is worth it in the grand scheme of things. Certainly, there has been a significant drop in 24 hours and we praise God for that. Time will tell. Samuel remains critical and is barely keeping his O2 sats up. I hope this will improve as the blasts die and leave him.
We are going to try to get home today but it will take a lot of planning. Samuel has now pooped twice since I started typing and that should allow us to leave with less medications.
Labs just came back. LDH is now over 2700 with many other signs of tumor lysing. These cells are dying fast. This probably buys us a ticket to stay longer based on what I see. Please keep praying that these cells die, the spleen goes down, Samuel gets his healing we have all been believing and praying for. Please pray for us to be able to cope come what may over the next days to weeks.
Yesterday was one of the hardest days I have had to survive thus far. My baby does NOT want to die. He is adamant about that. We want him to grow up with us too. This is my heart and soul.
4/18/08
Going back to the hospital. Samuel has another ileus and is filling up with fluid again. If you are not on the announcement list, you won't get updates until we come home. PLEASE PRAY>
4/17/08
Today's Labs
WBC 71.7k
ANC 1500
Blasts 91%
HCT 24.6
PLT 86k
LDH 974
Based on today's labs, looks like yesterday's were correct. I continue to suspect that Samuel's body is so poisoned with lactic acid and dead blasts that it just cannot get them off. He received two liters of fluid last night and did not pee off nearly that amount. I cannot feed him properly with his spleen like it is and that doesn't help in diluting the toxins in the blood. These labs were drawn before we gave the new drug and even with allopurinol, his uric acid was still 4.8 His potassium was low again today which shows me the cesium is still working. In the last 24 hours he hasn't gained any blasts, and hasn't lost any either. It seems that tonight after nearly 24 hours on fluids he is finally pooping and peeing more normally so we hope to see a better drop in blasts tomorrow since it seems like his hydration is finally caught up.
We started the new drug today and I gave a third of the recommended dose because it is Samuel we are talking about. I am unsure about contradictions with things we are already doing enhancing the effects of things so slower is always more prudent. His spleen is still huge but seems to have softened a little in the front. His tummy was ale to handle more food this eve and he definitely felt better after getting some real food in rather then tiny amounts here and there.
He slept better last night than in previous nights and has been better today than yesterday. He is still feeling terrible all things considered though. Unfortunately he has finally noticed that he is sick all the time and says, "I just want to get better. When am I going to be better?" These are gut wrenching questions to hear from an almost six year old. This seems to be the first time he has really noticed that he has been sick a long time with very few periods of wellness. He is literally begging for food and his tummy cannot handle anything other than tube feeds with all the enzymes. Even popsicles hurt his tummy. How long must we endure this? How long must he endure this? Is there an end in sight? Days like these really make me question how long we will pursue things if it literally means trapping his spirit in a body which is failing. The misery and suffering he has endured kill my soul when I start adding it all up.. It takes my breath away to imagine life without him. Yet, no adult with ant to live the life he has lived. Our Onc spent some time talking to the MD in NY who just wrote and published the latest high risk ALL protocol and she had never heard of case like Samuel. Like all the other MD's who have been spoken with in the past, the call ended with "Good luck."
I feel so sorry for our kids trapped in this life too. Anna doesn't remember a time when Samuel was not sick. Currently, she does not understand why Samuel hates her again. A couple weeks back, they were best buddies. Now he hates her again. The big kids listen to screams of agony on what seems a daily basis and it has become normal to them. We have somehow managed to continue to do school even in this midst of this crisis because crises have become normal and we have to work around them. I feel sorry for Mark and I who have spent the last four years in anguish over what we have had to deal with and there seems no end to the ride. The good days have been few and far between and when Samuel hurts like he has the past few days, you cannot even pretend things are okay like this. I read today that "cure" in cancer terms means prolonging the inevitable. I am tired of Samuel suffering, therefore we ALL suffer and yet thinking of life without him here does not make things right either. Trying to manage this most days alone because Mark has to work is testing what resolve I have left because it is torture to have your child ask YOU when they are going to get better all the while you are helpless to do more than you have already done. He says he cannot take this anymore several times a day. I talked to him about what his choices are. Fight on without knowing when and how this will end, or go to Jesus and be free. He can decide. It is crushing to my entire being to think I could live on earth another 50 years without him. He is my heart, my soul and our connection runs deeper than anything I have experienced with any other soul on earth. Part of me would die if he died. The suffering has got to end. This has been a vicious cycle and we have been helpless to do nothing but ride it out and make the best of it.
i don't want to leave Samuel's life up to luck. I leave it up to God. We have done nothing less than believe for our miracles and I know that God's wil for Samuel is not this life he has now and also is not to die before he is ready to leave earth. When I think of things in terms of God's plan, I cannot say this is futile because I know nothing is impossible with God. But there have been times in the past and days like today when I just wonder what are we saving him from? Prolonging the inevitable? If you got ten good years without issue, then prolonging it would be fine. But to think of more years like the past four which have been surviving one hell just to go on to a whole new one? How can I do that to him? His life has a purpose and it cannot be to show how much a person can suffer and still survive. How am I as the parent supposed to live day in day out and watch suffering and more suffering while people wait and expect the inevitable. Good luck is the parting word. We the parents made our own luck in many instances when everyone around could not be bothered to give us the time of day. I just need that ray of sunlight that God brings which reminds me to keep going, Restoration is near. I am tired, sleep deprived and that always brings me to my knees with God. We need mercy, healing and a clear direction. An end to this, whatever that means. I always want an end, and we never get one.
I ordered Samuel another bottle of ATP today. It will help convert all that lactic acid back to glucose since his liver is not able to do it as he is not able to process protein at the moment. It should arrive tomorrow and I expect that it will help as much as it did months ago when cancer was literally eating him alive. Removing the lactic acid at least stops the breeding ground for cancer. It is still not evident that the cells are growing as much as backed up from leaving the body. Again, time will tell what is going on here.
Please pray that his spleen reduce immediately so he can eat. He just wants to eat. Pray for us to continue on with strength and wisdom.
4/16/08
PM Update
Labs
WBC 79k
Blasts 82%
ANC 2400
HCT 25
PLT 30k
LDH 900+
Not the labs we were expecting at all. I told everyone there was no way I believed this count. Maybe 7.9k but not 79k. What we think is happening is that his body is not eradicating the blasts quickly enough and now that his spleen is full, they are building up in the blood. The overall number of WBC's doesn't make sense based on Monday's labs. We have seen some strange labs in the past but they always made some sort of sense in the grand scheme of things. These don't unless he is just not eliminating them fast enough. Since we did not see the detox diarrhea today and we had no IV fluids last night and his creatnine is up, this seems likely. However, no one wants to see numbers like this. With so many things going on in Samuel's body right now, the jury is out and time will tell.
Samuel received platelets today with no issues. We figure we will be back for the weekend for reds and more platelets too. We decided not to do IV MTX and use a different drug instead which will hopefully reduce the blasts and spleen quickly. Samuel's uric acid was also high today so we came home with allopurinol to reduce it before starting the new drug. We have also doubled our IV fluids because his tummy still cannot hold enough fluids to flush him out. The high uric acid and LDH show cells are dying but we are not sure how many are still growing We wil start the new drug tomorrow and see labs every day for the time being to be certain things are not getting further out of control.
Samuel feels better today than he has in days and it still feels like if we get that spleen off his gut, things will be so much better., He says it feels like a rock. It is hard to imagine he is "blasting of" and feeling better. That makes no sense to us. But the next few days will tell us more about if he is making them, or just not eliminating them fast enough. Oh, how we wish we had some normalcy, what is that again? This is one of those days when you walk by faith and not by sight because the paper looks like crap. I did not even get a hard copy of the numbers today because I don't think anyone wanted to give those numbers life by making them a hard copy. The numbers above are just the estimate, not final results. I don't know if there are any neuts either.
We are all tired from another roller coaster ride. Keep praying. When we see things like today's labs, I often lean on my spirit. Does it say we should worry that the walls are crashing down? No. While we are certainly not impressed, we will just call this one a dud. God continues to hold the final card.
AM Update
Another long night for Samuel with many aches and pains. However, this AM the diarrhea has stopped and he has made beautiful poop. The right color, the right smell oh yeah! Based on that, I would say that the bulk of the blasts have departed. He sweated many of them off overnight I think. He is feeling better this morning then many of the past days, sitting on the couch, walking around a bit and not doing too much crying. That is a relief. His spleen is still a brick and extends to his belly button so you can imagine he walks like a preggo. He started to ask to be fed last night and is able to hold about 5oz in his tummy now so there is much improvement there. I hope things continue improve in leaps and bounds over the next several days and he is able to get back to the crazy Samuel I often tell to settle down. We head to clinic at noon for the MTX which I hope wil quickly blast what is hanging out in his spleen and release the pressure there. Whatever blasts are left are certainly sick, weakened and dying so I have high hopes or this tiny dose of MTX to bring great relief. Praise God for some relief this morning. More later....of course we cannot wait to see labs.
4/15/08
Change of plan. We are going in for IV MTX tomorrow. Samuel's spleen has become larger and harder and is now, in every sense a blockage to his GI. I think it is obvious that the majority of the blasts are there, came from there and are dying there. Cesium makes cells sick and unfortunately part of that is that they swell. If they are a tumor or part of an organ, the whole thing swells. If you use cesium and chemo together, you do not have this effect. Obviously, it can be a life threatening issue depending on where the swelling is. If we choose to do nothing but cesium at this point, it could be weeks before this goes down. This hard enlarged spleen is not something we have had to deal with before. His spleen was enlarged previously, several times, but not a solid rock. Samuel can only handle very strained fluids. A few days back, he was able to eat a banana. Now it just sits in his tummy and eventually starts to ferment and cause leg pain. Removing a banana by NG is not impossible however so as soon as I take it out, he improves.
Home Health called to say that they cannot send us Nubain at home for pain. Apparently it has never been done. I guess we are not going to be able to set the precedent either. So we are still using Motrin even though the GI side effects are not making me happy. Right now there are not many choices. He hurts. he has been pretty miserable again today as the cells die off. We hope tomorrow's labs show very few blasts left over and that in the next few days, his spleen softens and significantly reduces. He wants to eat so badly and is so sad that he cannot.
Every food that goes into his body has to be either well cooked with tons of digestive herbs or bathed in digestive enzymes and then stomach acid or all of the above. That means food has to be prepared several hours before I need it so all the digestion is done. All he has to do is absorb it. This seems to be working well and is basically what we did last winter when his body was dying from starvation. He was back up to 40 pounds yesterday. I am having to get up several times a night to give him small boluses of food. His tummy is gurgling all the time now most likely because of the spleen putting pressure on it so he feels hungry but cannot have much at a time I was so tired that I actually took a nap today once I realized the coffee wasn't working. It will be such a relief to get this crappy period behind us. I just want him to be able to eat and poop. How many times have I written that? It all comes back to that in the end.
Samuel's afternoon's have definitely been better than the mornings. You can just smell the cell death. this is now the third time we have been through this. What is nice about this time is that when I call the clinic to let them know what is going on here, they don't think I am crazy anymore. Samuel remains on fluids at night and probably will for the next week or so until we see his gut start working and spleen go back to it's cave under the ribs. I am glad he is not up and running around here only because he would burst it for sure.
Please pray for his spleen to soften and go down immediately. This is our biggest problem at the moment. Once that happens, he can start to eat again and we will know more about the condition of his gut. Please pray that the remainder of circulating blasts die off over the next few days and the cleansing crisis symptoms go away. I hope that by the weekend we are through this very difficult time and everyone will be resting better, feeling better and looking forward to Samuel's birthday week instead of just trying to survive it.
This week, we are literally just trying to survive it. Thank God for His continued miracles and mercy.
4/14/08
Today's Labs
WBC 15.9k
ANC 1440
Blasts 63%
HCT 26.5
HGB 8.9
PLT 57k
LDH 612
Samuel's body does not want to have cancer. I think it is obvious by how fast the blasts are dropping off Percentages don't show the number of cells which have died accurately. Last Thursday he had 27k blasts per ml of blood. Saturday he had 20k per ml of blood. Today he has 10k per ml of blood. At this rate, by Thursday, there should be very few blasts left. Whatever is there on Friday is going to get a small 10mg dose of MTX just for good measure. This is half the usual maintenance dose of MTX for Samuel's size. A dose given when a person is actually in clinical remission. That is how sensitive Samuel's body is to the meds. The terrain in Samuel's body is so unfavorable to cancer that it just cannot live for long and that is a great feeling. this is probably the fastest die off we have seen yet. The faster they are eradicated, the faster he will have cell recovery because the marrow damage will have been minimal. The fact that he still has an ANC today is shocking. It would be awesome to see it NOT bottom out but that is really asking for a miracle. But that is what we have been doing all along anyway so I will put in that request. We expect to need PLT on Friday as well.
Samuel is miserable with all these sick dying cells trying to leave him. He is sweating them off, pooping them off via diarrhea and peeing them off. He reeks of cancer and acids which are trying to escape from every pore. He has had many baths and remains on IV fluids at night and it is helping because his uric acid was still good considering. His tummy remains slow and achy and we are being so diligent in watching the quality of his poop to be certain nothing is backed up. Unfortunately, with al the dead calls he is passing, he is stuck with a lot of diarrhea so it is hard to tell how things are going. Fighting cancer is hard work on an already compromised body. Samuel's body has been through so many unfathomable things and it just keeps going and going and going. Now, that is what I consider a warrior. This is not an easy part to go through and I will be so happy when we get past this.
His protein and albumen are low. Just a few days of starving and they dropped significantly. His weight was down to 39 pounds yesterday. His proteins went up a tad today so he is absorbing some of what is going in. He is not getting a ton of proteins right now because I don't want his body bogged down with digestion when it is in a cleansing crisis. Carrot juice with some onion, garlic and celery seems to keep him comfortable and the achy back and legs at bay. I will be glad when we hit the end of the week and this levels off and he is not so miserable. The body spends time from 4am to noon doing detox and that is the time we have seen the bulk of diarrhea. After that, his poop firms up a bit and looks so much better than we have seen in weeks. He also seems to feel better in the afternoon. This morning was hell and he took an early nap. Probably the best thing he could do at that point. He is coloring again currently. Anna is sad because he is not playing with her much.
Samuel's spleen has not budged size wise and I hope that it will reduce by the end of the week as well. His tummy hurts in that place as poop passes through the gut there and within a few minutes of the tummy ache, he will poop and get relief. It is obviously a major problem for him.
Samuel will turn six in a week. I haven't done anything for his birthday yet. I pray he will be feeling better by then. We should do his party this weekend but his ANC will probably be zero at that point so we may hold on the family gathering and just do little things here. This is not the type of celebration I thought we were going to do but by the same token, I am thankful he will turn six here rather than in Heaven. He will tun six here and still have his whole life ahead of him with every chance at cure.
Please pray that Samuel's dead cells leave quickly and the poisoning of his body from their death end in the next days. Pleas pray his spleen shrink quickly and get off his gut. Praise Go that cancer has NO PLACE in Samuel's Holy body. Amen to that.
4/13/08
It is so nice to be home! Things are still high maintenance but we are used to that. What we are not used to is Samuel needing 2mg of morphine just to cope for an hour and even that did not help. Samuel got doses of morphine like that after major surgeries to put the dosage in perspective.
After my last update here last Monday, we continued gut clean out as best we could. Samuel was also on IV fluids because he had constant diarrhea. Tuesday night he passed the "torpedo." If you have ever seen the pictures of what comes out of a rancid colon during a colon cleanse and wondered if that was real, I can tell you that it is. We have never seen anything like what we saw. After he passed that, we thought we finally had gotten somewhere. However, apparently after his gut got rid of it, it went into shock because by bedtime his back hurt, legs hurt and he needed morphine I listened to his tummy and it had almost no bowel sounds. Scary. It was also hardened again. We could not get him comfortable He had just gotten morphine and it did not help. I decided at 10pm to just take him downstairs and watch a show together and see if distraction would help. It didn't. I knew it was going to be a long night. About 2am his gut started to have sounds again and I made him tea which seemed to give relief so by 3am he was able to sleep 2 hours. that was the first sleep of the night. I slept an hour or so. He slept off and on through 7am and we chose to just use teas and not morphine as that seemed to just make it all worse. Mark left for work and Samuel just went downhill. He had been on fluids all night and by 10am, I gave him morphine again. 1mg barely got us an hour of sanity. Then he was miserable again. He was not moving or walking by then and I literally did not leave his side. The big kids took care of Anna for the whole day. I gave him another dose of morphine at 1pm and tried to put him to bed so I could sleep a little . This did not work out so well either and by 3pm he was up miserable again. By this time, no liquids were making it through. We had seen some decent poop however and I just thought he had finally passed the blockage and this would just be a 24 hour thing. I put him in the tub in the afternoon to see if that would at all help. Throughout the day as I was carrying him around I thought he felt heavier but figured I was just tired.
When Mark arrived home from work things just continued to escalate from worse to hell. Samuel was starting to need 1-2mgs an hour of morphine just to cope. I started noticing his face looked puffy. Then I noticed his legs did too. His hands also were getting full of fluid. His breathing became grunting, his heartrate was slowed, his gut sounds were nonexistent. I started thinking back to when he last peed and figured it was noon. It was bout 7pm by this time. He was starting to be thirsty and drank and drank and drank and the thirst was never quenched. As I typed this, I just thought of Delma who used to say that the people in hell beg for just one drop of water to quench their thirst and it is never quenched. Samuel drank over a gallon of water which I immediately pulled back out of his tube because it only added to his tummy pain, not to mention that it wasn't absorbed at all. Hell. Pure hell. I figured that if I weighed him at that point, he had probably put on five pounds of fluid in a matter of hours. I paged the Onc on call who just so happened to be ours, thank God. He was not happy to hear that Samuel was taking on fluid and immediately said it was just the progression of the disease, the usual. He called the ER MD and called me back to say they had NO room for us. We needed to go to Seattle. There was no way we could go to Seattle because they would not know what to do with us and we would never get home. He decided to call the floor to see if there was an open bed. We prayed there was because we were not going to Seattle but knew we could not weather another night like the last one. They moved some kids around and made room for Samuel and we were admitted to the floor. It was a horrible drive in at 9pm and I forgot how to even pack. We took all the kids along as well. Samuel's breathing was so fast and shallow that I was literally waiting for it to stop while we drove. Very scary. Samuel was happy to get back into a bed when we arrived because it was so hard for him to sit. Mark and the kids left at 10pm and we got settled in.
Samuel's BP was 170/120 and remained high for the first two days. I asked that they hook his NG up to suction so he could drink as much as he wanted still and I would not have to keep drawing it out ever five seconds. The MD on call came in and asked me what "I" wanted them to do. Here I thought they had a plan. I told them I wanted that fluid removed immediately. Samuel's gut was not functioning, full of air, then add all this fluid crushing all his organs, can you say painful torturous way to die? They started lasix around 12pm and he peed off two pounds by morning. Unfortunately, the MD on call ordered another dose of steroids because our Onc told them Samuel was doing 12mg twice a day. We were only doing once a day. So guess what, by 9am the next day,, all the fluid he peed off and all the relief he had gotten was gone because he started filling back up again. So annoying. I think I would have been better about catching that if I had been operating on more than two hours sleep for three days time. We had RN Karen for the three nights we were there and she was superb about keeping Samuel on track with meds and not allowing the alarms to keep us up. She was the RN we had on our last three nights here in 2004 and I thought she was awesome then. This was the first time she actually met Samuel when he was not comatose. I really was thankful she was there because I was able to get a few hours sleep the first night, a few more the second night and several the last night.
When the Onc visited in the am, steroids were stopped obviously and we discussed the overdose issues and how quickly they would resolve. Labs showed his potassium was too low for another dose of lasix and since he was not absorbing anything through the gut, I could not just give him an oral dose either. So we had to wait. Labs that day showed his WBC at 57k with half blasts. No great shock. LDH 1323. I hoped that meant cells were dying, not blasting off more. My GI had talked to me on the phone Wednesday night before we were admitted and gave me the other drug info so we could stop the morphine but when I asked the MD on call that night, he had never heard of it. Useful, eh? I handed the info to our Onc Thursday afternoon and told him we wanted to switch. It finally got done that eve and it changed everything. Samuel was able to get another dose of lasix Thursday afternoon by 2pm after suffering all day. By 7pm he had peed enough off that water was being absorbed by his tummy. I told the Onc was was going to start breastmilk that night and I also gave him a good dose of ionic potassium. He started perking up quite a bit.
The next day Friday, he perked up a bit more and i asked that we switch the IV meds to Motrin since it actually works better in many instances than morphine. It did then too. By 10am, he started pooping and once that happened, he improved in leaps and bounds. he probably pooped 50 diapers worth on that day. No kidding. All breastmilk poop, no remnants of sand or gravel. I was certain then that we succeeded in getting everything out. he was sitting up coloring by afternoon and doing puzzles and playing with play doh. Once the steroids were stopped, the fluid did not return although it took til Saturday to fully get it all off. He ate a few bites of a banana and some yogurt that afternoon. Once his fluid was gone and the gut started moving, all narcotics were stopped as he did not need them.
RN Kelly came in both days to visit which I appreciated a lot. I told her some of my concerns with the Onc who quite frankly gave the impression that he was tired of our presence. Sometimes I just wonder if he wishes Samuel would just die and get it over with. I told her the other MD seemed better and wondered if I needed to switch again. this is hard enough without having to deal with people who are all waiting for the other shoe to drop. If nothing else, I would think by this time no one would be foolish enough to count Samuel out. She told me there were certainly many skeptics in the clinic and I told her it has not gone unnoticed. When I get labs from certain RN's there, they will say, "He has blasts again" as if it is funny. I need people who want to help, not who cannot wait for him to die. It is still very curious to me that people who are supposedly in the business to save kids are just waiting for mine to die. Apparently the "right" thing for me to do was to have sent him to transplant so he could die a miserable death from complications of the first round of chemo. Look people, the induction round almost cost him his life four years ago. And obviously chemo did not work because one, he cannot tolerate it as it is written in a protocol and two, he relapsed. Why in the world does it makes sense to put him through this again expecting it to be different? he would have died after visiting hell on earth first. While this has not been any picnic, it has been much easier than those first six months in 2004. And he is still alive AND he still has every chance at surviving and thriving. Kelly told me before she left Friday, "Jen, I don't know anything about the naturopathic stuff you tell me about but I see that you have done amazing things with Samuel and I am willing to learn."
At any rate, either the Onc overheard my conversation with Kelly or she chatted with him after the face. I told Mark I intended to pin him down and ask what his problem was Friday. Mark always laughs when I tell him these things because he knows I have no problem putting people on the spot. And so I did. First thing when he arrived in the afternoon Friday just after telling him we were ready to leave. He wasn't shocked by that at all. they were no longer doing anything we could not do ourselves at that point. I told him I was going to ask him a question that I wanted an honest answer to. "Are you done with us or what? Are we too big a pain in the butt? Is this too difficult to go against the grain? Obviously "I" am roped into this for the long haul, but you are not. if you want out, I need to know." Well, he says he is not done with us. He was sort of apologetic about the situation over the past few months. he also stated that he now realizes that the path to Samuel's remission is his gut. He finally, now after three times of having gut issues, FINALLY realizes that when his gut behaves, his blasts go away. Obviously if Samuel's gut were normal, this would be a whole different ball game and first and foremost, I will always protect his fragile organ to the best of my ability. The Onc left the impression that he plans to work together a little better in the future but as you all know, I will do this with or without his help. He did say that if there were things we needed him to do differently in the future to let him know. Overall, he was happy that Samuel's gut was functioning again and that labs were again heading in the right direction. With NO treatment, the WBC hit 57k, then went back to 27k before we left. Cannot argue with that. his ANC actually went up before we left from 2600 to 3000 the next day. The Onc figures we have a few more days with an ANC before it is gone so we will see how it plays out. Obviously he had enough to have a huge immune response to PLT yesterday which was annoying because I am certain it doubled his WBC again.
When that happened, I thought about the breastmilk neuts which are even more aggressive than the ones we make ourselves. I wondered if they did not have a hand in the reaction. Guess we will never know. What I do know is that Samuel's ANC never crashed when I pumped milk for him during high dose chemo so as long as we have some milk, he will have antibodies. Speaking of which, the culture drawn Friday remains negative and they were unable to figure out what the organism on Thursday's culture even was. Interesting. Now, we will have another culture from yesterday as well. I will be interested to hear what the outcomes are Monday if anyone knows anything. i continue to pray we do not get a call today. Unless it is something really bad, we will not treat other than by diet and silver, garlic, oregano, probiotics, cesium, geranium, stabilized oxygen, etc. I have a lot of options as long as we have an ANC and milk.
I did talk to the Onc about "treatment" his way for the cancer. The flow showed all the blasts are leukemic but of course does not say whether they are from the spleen or marrow. This was not crushing news in any way and I guess we have gotten used to labs with high WBC's and blasts since they don't bug us much either. The Onc cringes everytime we say that the cancer is easy to deal with in comparison to the gut. Right the gut, the cancer goes away. Yesterday upon leaving, he did actually repeat this to me and said, "See, I am learning." Our intent is to let his gut rest and recover this week and just do our usual treatments and see how things fall into place gut wise. Samuel is walking, playing and doing his usual stuff today. He still has back pain and pressure and diarrhea and I am certain that it all relates to the spleen. It is still huge going down to his belly button and hardened. He says spleen equals leukemia but we also know that spleen enlargement is also gut related so in righting both, I pray it goes back to normal quickly. Right now, it is in the way and Samuel's gut is not going to get back to normal until it moves off his intestines. It is using them as a shelf. All his tummy pain is on that side. This enlargement most likely made it more difficult for the torpedo to pass. For the rest of my life I will never forget the torpedo. So, when we need PLT again which will probably be mid week, we are thinking about doing some low dose IV MTX if all our ANC is crashed. It will destroy PLT, RBC's and WBC's in the process and hopefully help get the spleen reduced and blast load down quickly so it does not take us three months to see normal counts again. If we nip this as quickly as we can now, he should not be transfusion dependent for months again. We cannot afford this lifestyle anymore. We are barely surviving now. I am typing this LONG update on the laptop since we still do not have a desktop and won't be able to get one until sometime next month. If you could understand how hard it is for me to see this awful screen and type, you would certainly appreciate this update even more. I am hoping that now that Samuel's gut is relieved it won't cost so much money in enzymes, etc to keep things moving. that should save me a bundle in the long run if he can actually make stomach acid and pancreatic enzymes soon. right now, he still isn't but that is most likely still shock and spleen.
Anyway, we know what MTX does and that it is well tolerated in low doses so I feel like this is a good option. We also talked about another drug that has actually turned blasts into neuts for another patient there so we may try that if we don't see fast enough progress. Samuel dropped 5k blast cells per 1ml of blood in 24 hours with NO treatment and we have restarted cesium today so I expect better progress now. Unfortunately, of the 27k WBC yesterday, 75% was blasts. His HCT was down to 28.7 but with all the blood they kept taking, I am sure it is even lower now. If Samuel still has an ANC of use this week, we will hold on any chemo until it is gone.
Samuel's lungs sound better and I am excited that his blockage is gone and expect that when his spleen goes down, that they will finally clear. That will be a wonderful day. My GI called me Friday night to check in and wondered if eh did not have a leukemic infiltration into his gut lining. She will biopsy next time we need a dilation and see if perhaps that caused some part of his gut to not work and store such a huge blockage. If Samuel has had that torpedo in there for the past six or more months and we still managed to get a grip on the cancer and get some good weight on him in the process, things should be a LOT easier now. At lest that is my prayer. Just more of God's miracles in Samuel's life. i am amazed that people can know all he has been through and overcome and NOT see God's hand here and expect great things. Our hope is that with the torpedo out of the way, we can finally make some real headway on the leukemia, Samuel really wants his G-tube back. Last week he, again, changed his NG him self. Everytime I tell a RN that, they think I am making it up. He does it himself. No, I didn't stutter.
It has been a long hard week and I am still exhausted. We will see labs tomorrow and plan the week from there. Until then, we all breathe a little easier. Thank you all for praying and spreading the word to others. If anyone can beat the odds, I know it will be Samuel, God's son. Praise Him with us.
4/12/08
For those not on the announcement list, Samuel has been inpatient with severe complications. I will update more as time allows but here are the updates you have missed.
4/9/08 Going to the ER please pray
Things do not look good. Please pray for God to protect Samuel and get us help asap. He is in a lot of pain and starting to retain fluids. His gut remains dormant. Please storm heaven!
4/10/08
We were directly admitted to the Onc floor last night and missed the ER completely. That was great because Samuel was just miserable.
It looks as if the steroids are causing severe edema in the tissues as well as glucose going up. His gut has yet another ileus but we think we have been successful in finally getting the impacted poop out. His potassium has tanked and his stomach is not absorbing anything again. So we are just waiting it out pretty much on morphine round the clock. Obviously that is not helping the motility.
Samuel's WBC is 56k with half blasts, ANC 8k and our Onc has already been in to discuss the leukemia. I reminded him again that without a gut Samuel is dead anyway so that needs to be the focus. I swear they would just nuke him in this condition even though his body is unable to rid itself of toxins or even function properly.
He is tired and resting off and on. I just cannot believe that a boy could have to suffer like this for over 70% of his life. It is sickening.
We will probably be here a few days until things settle down and his body is functioning properly. Please continue to pray for his recovery and restoration.
On a positive note, we saw him pass a poop which looked like it was several months old and looked like a torpedo. After that, we saw normal looking poop for the first time in weeks it seems. Unfortunately, I think that getting this impaction finally out has put his gut into shock. I really think it has been in there for months. Mark and I are excited to think that shortly, his gut will be functioning properly again and absorbing MUCH better. Right now, he is full of trapped air that is not moving and painful. He wants to go home.
Thanks for your prayers.
Jen
4/11/08
Please note that I am only updating the list as I have no access to my website.
Samuel is better today. Stopping the steroids seems to have stopped the fluid. The Onc said that occasionally he seeks kids hit the limit. One day they are fine, and two days later they have all the symptoms of overdose. Sometimes it can take a few days for the fluids to stop going into the tissues and other times you stop the steroids and it turns the faucet off. Samuel seems to be the latter, thank God. Adding all the fluid to a gut which does not want to work has only added time and misery to the horrible situation.
Today, his tummy has softened a bit and bowel sounds are evident. We were able to switch from morphine to nubain which is what the GI recommended. It is actually the drug we used successfully in OR after Samuel's anoplasty. I think we are done with morphine at this point. Samuel's gut is waking up slowly. Mark was able to bring me breastmilk from our donor last night and he was able to tolerate two oz. It took three hours for it to be absorbed but he improved. This morning, he has had four oz. and it is going in faster. He has not pooped in two days but we think he was pretty cleaned out before we arrived. I am waiting for his potassium to normalize and then I plan to start cesium and hopefully neutralize the lactic acid. His LDH was over 1300 yesterday. His potassium was still low at 3.0 and needs to be at least 3.7. Some bad news for the day was that a blood culture is growing gram negative rods. We are sure it is something that has crossed from the gut and his ANC was still good yesterday BUT it is concerning. The stress his body has been under is enough to make him vulnerable. Also the fact that his nutrition has been again compromised is not helping. I just pray that the breastmilk helps wake up and heal his gut as well as provides enough antibodies to help fight. We are choosing not to introduce ABX for the time being but he is running temps up to 99.1 so not huge, but still something to watch. That probably buys us a few more days here. They drew labs this morning and another culture so I am waiting on those.
Samuel needs his port reaccessed and the IV team here is allowing Mark to come and do it tomorrow for Samuel's comfort. That is awesome. Our RN's have been great thus far as well. I do get the impression, however, that our Onc is not too pleased with us. Samuel is coloring dinos right now. He hasn't colored in a few days so this is nice to see. He is still heavily depending on pain meds. What needs to happen is for his gut to start moving and release the left over air and the pain meds to allow him to feel good enough to get up and move. Moving will help a lot. Laying in a bed is certain death. We need him to be able to get mobile. He really needs to sit on the toilet because while he has not pooped, I think he may have some in the rectum as I am seeing skid marks in diapers.
Please continue to pray that God work his miracles in Samuel's body. Things are still critical here.
Much love and thanks for your continued prayers.
Jen
4/11 Update 2
Ode to the power of breastmilk. Praise God for the power of prayer. Samuel's tummy is moving and he has pooped six diapers full of breastmilk poop. The most perfect poop we have seen in months. It looks like we have finally cleaned out his gut. He is sitting up doing puzzles, pain controlled with Motrin. Things have turned around in the past two hours in a way only God can do.
Labs are partially back and look significantly better than yesterday. Update more on those when they are complete.
Keep praying. We are looking forward to leaving soon. Jen
4/12/08
We are staying this morning long enough to get platelets as they are down to 27k. Then we are going home, praise God! He is having tummy pain but most of it is residual gas pain and most likely partially from his enlarged spleen laying on his gut. We hope this will shrink and soften quickly.
Yesterday's WBC was 37k with 65% blasts, ANC 2600. Today's preliminary WBC is down to 27k but no differential. LDH down into the 700's. This should go down more as he is able to tolerate more foods to help neutralize it. He is off all pain meds but Motrin and was up walking last night and even got into the tub here. Our RN for the day was very impressed with the huge turnaround.
Samuel smells like a breastfed baby. It is rather cool! He is only getting the milk at the moment. He can only hand a few ounces at a time and it looks obvious that for the next week things will be touchy with his tummy. Please continue to pray for his gut to heal from the enormous stress it has just endured.
All the fluid in his tissues is now gone which is a great relief. We will be so thankful to go home. Every time I come here in an emergency situation, I think back to 2004 when we came in and seemingly never left. It only takes a matter of hours to get sick and can take weeks, sometimes months to recover from.
We do feel like we finally found the thorn in our side as far as what has been holding Samuel back from a complete remission. Our Onc thought his marrow probably only had 10% leukemia when his labs were at their best. I think once Samuel's spleen goes down and his gut has healed a little more, it will absorb like a sponge. I think our lives will be much easier. Looking forward to that.
No word on the cultures yet.
Thank you for continued prayers and spreading the word. We are not defeated and we won't give up.
Jen
4/12/08
We are home but not without a three hour delay due to a platelet reaction. Samuel had chills, fever and pain just as the transfusion was just about done so he did not even get all the PLT. His ANC actually went up today to just over 3k so he had enough neuts to get a good fever from it. Cultures and all sorts of tests were done and it took forever! Glad to be home. he is in bed. Please continue to pray. Have lots to do tonight. Update more tomorrow. Thanks for the continued prayers.
4/7/08
Today's Labs
WBC 27.6k
ANC 5520
Blasts 42%
HCT 32.3
HGB 11.1
PLT 95k
LDH 532
Uric Acid 9.4
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