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
These are much more acceptable! Not great, but after this weekend we did not know what to expect. They certainly show that we are finally on the right track with Samuel's gut but not out of the woods yet. The uric acid shows that Samuel's body is once again experiencing tumor lysing so fortunately we are pushing hydration big time. Mark and I are unhappy to see the PLT drop lower and the HCT too but hope that the PLT are at least in the gut and will hold on. If they continue to drop, we probably have enough to get to Friday That is going to be a sad state of affairs if we need to do transfusions again but as Mark said, it is better than the alternative, you know death? Samuel has dropped 10k blast cells and 10k neuts in the last few days. that is a lot! It is nice to see his ANC go down but we certainly don't want it to bottom out either.
The yeast culture shows moderate yeast but not candida or anything that is abnormal. This is miraculous and good news. No results on the flow study yet.
We are still working on Samuel's gut cleanout. Still seeing sand, gravel, lots of watery diarrhea and electrolyte disturbances galore because of it. He feels pretty good considering everything. He wants to eat though so is frustrated because he cannot. I am still waiting for the day when I give him clear fluids and he poops clear fluids. You know he is not clean if he is pooping out black sand on clears. Please pray for the poop still suck in Samuel to come out immediately so his gut can finally be righted. Only God knows how long he has been carrying around an impaction. Months? Since last year? I don't know. It is sick and we are so tired of his gut not working properly. May God heal it NOW.
Praises for improvement in labs and Samuel's body. Please pray for his gut to be healed and good cell lines to hold.
4/6/08
Update are going to be short and to the point for the time being as our main computer died and now I am stuck with the laptop which is NOT ideal for a legally blind person. I glare at it and it glares right back. Within ten minutes I give up due to eye strain. The jury is out on what we are going to do about the computer situation for now. Luck has not been with us this week apparently. My juicer broke and needs parts to rebuild and the only shoes I can stand to wear also broke so they are being repaired too. I only have two pairs of shoes. Joy to the world.
Samuel is doing fine No morphine since yesterday eve. He has been pooping a lot today but we have yet to see something normal. He pooped out a huge clump which could possibly be part of the blockage since it looks different than anything we have seen so far. We have not seen anything that even looks remotely normal. He wanted to go to the school to ride his big wheel but between the rain and pooping, we are pretty much stuck here. I have been trying to keep him doing less strenuous play due to that spleen but it has been hard since he feels fine and wants to run around.
Please continue to pray. Tomorrow will be a big day as far as test results go. My adrenals are worn out and it seems like when it rains, it pours. Praise God that Samuel is feeling like his usual self again though and while not pooping real poop, he IS pooping and NOT hurting.
4/5/08
If you haven't ready the 1am update, see below this one.
Finally, after 28 hours with NO poop whatsoever, Samuel is finally pooping again. Thank God! The pressure on his back has subsided and he has only needed one dose of morphine since we got up this morning. We should have seen a problem coming after Thursday's labs, which looked like this.
WBC 47.8k
ANC 17k
Blasts 45%
HCT 37.2
HGB 12.5
PLT 168k
LDH 731
Liver enzymes are starting to go up, his liver is starting to swell and his spleen feels like a grapefruit. Luckily, it does not hurt.
After having a GREAT day Thursday despite labs looking so crappy, he woke us up at 1am screaming that his back hurt. I spent most of Thursday doing a gut clean out which did not clean him out. After half a day of clears with Go Lytely, he was still hardly going at all. He felt fine so we allowed him to eat some dinner after literally fasting half the day. That seemed to become a plug in the gut because after that, he stopped pooping for the most part. I got him back to bed at 1am only to be woken again at 3 and then 5am at which time we just got up. He was screaming about his back in a whole new decibel it seemed. Nothing helped. At first I thought it was the same old thing, muscular pain, but after a good dose of fluids and tea, it was still unbearable. Mark left tor work only to return within the hour because things were not getting better and it was obvious that any fluids going into his tummy were only adding to the misery.
We called the hospital to let them know we needed an x-ray and some other fluids mixed because I think the bicarb may be adding to the blasts. We have certainly seem them look hideous and when we stopped the bicarb, they just vanished. Prior to leaving, we tried Slimy, aka the enema, and got very little in return but I am glad we did because we were able to get a very clear picture of the problem. In the x-ray, Samuel's tummy was empty, his little colon and rectum were empty but there was a huge mass of pop in the middle. Too high for Slimy to help with and too low to try to draw out with the G-tube. That gives me a really clear picture that all his issues lie in the middle of the small intestine.
When we walked into the clinic, Samuel was screaming so loud that the RN's all had to end their calls because they could not hear. RN Kelly ran right over to see if we wanted some morphine. Since Samuel had been previously okay in the van, I told her to wait but once I got to x-ray and realized he was only getting worse, I had the tech call to let them know to just order it. For the first time that I can remember in a long time, he actually got good pain control. As soon as it took effect, it totally masked all of it. He was happy, playing and being himself after previously being at a 10+ on the pain scale. That was a relief. While we were waiting on meds, we went up to say hi to Susan and Chris in Infusion which was fun. Nice to visit and NOT need a transfusion. Samuel was fine by then and back to his usual self other than he was not walking yet. He told Susan about how much he had been riding his Big Wheel. He later impressed the RN's in the Onc Clinic with his knowledge of the dinosaurs naming them one by one, many they did not know the correct names of. Get him past the pain and I guess he is just so happy to feel better that he forgets it all, that is, until it returns. And it did about three hours after the IV dose. Back with a vengeance. I was up at 1am with another IV dose and thankful that we can do this here. Needing it at the hospital requires buzzing a RN, who has to call pharmacy to send it up, and if you are lucky, it might be there in 20 minutes and then take 10 minutes after that to get it on board. Here it was grab it and done in 10 minutes. Not having to wait that extra 20-30 minutes with a kid who is about to come unglued screaming bloody murder is worth it's weight in gold. Back to bed until 7am when it all started again. Thankfully he started pooping and the pressure was relieved quite a bit and he hasn't needed morphine since 7.
We saw our former Onc who has actually HAD an ileus and he immediately ordered Samuel not one but three different kinds of morphine. We also came home with normal saline for fluids to help hydration since Samuel is not absorbing properly. We decided to restart the Reglan but doubled the dose. It seems to be working. He has much better bowel sounds this morning than yesterday. The last major ileus he had in January where he stopped pooping and started puking resolved quickly because puking gives the gut the jolt it needs to untangle whatever is binding. No such luck this time. Samuel's stomach remains distended and hard today. We wonder if he has had a partial obstruction there for a long time which allows some food to pass but not everything. Like we have seen in the past, liquid foods go through fine but add solids and it becomes a plug. This is obviously something that hasn't resolved fully and absolutely needs to now. I don't foresee him eating food with his mouth for many days yet because of this. He is unimpressed but this afternoon happy that his back is not hurting as badly. It was so bad that his breathing had become grunting which is an all too familiar reminder of how the demise of his colon began in 2004. So, while we do see some improvement, we have a ways to go. We need to see poop, and a LOT of it. All we are seeing currently is sand and gravel with tons of mucus.
Our former Onc talked to me a bit about other leukemia treatments which we could try. I asked him if he has ever seen a person "blast off" and still keep their PLT and see their HCT climb. Samuel has a LOT of blasts now. And he still has a LOT of good cells. The ANC continues to go up. Normally, that is the first thing you lose. The Onc has never seen this either. We talked a bit about Samuel's gut and the connection between it flaring and seeing blasts. It gets under control and they go away. He thinks that perhaps Samuel's spleen is making all these blasts and that they will become neuts, not lymphs. We have certainly seen a steady increase in neuts. If these cells are being made in the spleen, that would also explain why he has no bone pain. In an emergency, the spleen and liver can make these cells and they are not always perfect or mature because that is not these organ's primary function. The spleen would enlarge as it took over making WBC's and kicking them out. It is pretty big and probably accentuated by the gut causing it to stick out more. It has definitely grown as the WBC has risen. Our former Onc was actually interested in knowing for sure so the labs were drawn for flow cytomotry to determine if these are malignant or not. It certainly did not make sense to him that these cells, especially this many, were doing no harm to the other cells. He thought these blasts would become myelos then metas, then bands, then segs. Samuel has had many labs in the last two weeks with all these different neuts present. We should have some results from this Monday. We also had a yeast culture done Thursday and it did not grow anything they could even classify by Friday so it was redone. Hopefully, we will know more about that Monday. Since it wasn't glaringly positive, I think we might dodge that bullet which given all the gut issues, would just be another miracle.
The bottom line is that we need to get his gut righted as quickly as we can. That means flushing everything out and probably waiting until he actually makes real poop while on clears. He won't be able to eat with his mouth. The pressure on his spleen from the gut and vice versa is now making the amount of food his tummy can handle decreased by half. He is not running around here today like the crazy man he has been but he is not miserable either. Just seems more tired. This is a good thing because the last thing he needs to do is rupture that spleen. Please continue to pray this resolves quickly and it would be equally nice to not see the WBC hit 100k. We chose not to get labs yesterday simply because we did not want to add to the stress level we were already carrying. His HCT looked like it hit 38 though. Everyone was impressed and commented on his great color. He looks rosy red today as well. Hopefully he won't lose too many more PLT over this but I know they are all trying to keep his gut going. They pair up with the neuts at any site of inflammation. The Onc was talking about ways we can lower the WBC yesterday and I asked him why I would want to do that if one, Samuel's gut needed ALL of them and two, if the blasts were not malignant, what was the need? Resolve the problem, they vanish. He was intrigued. That was refreshing. We know exactly how we can drop the WBC. I want proof that I need to first.
Mark and I feel exhausted today. We are taking it easy and enjoying a much better day. Nothing I hate more than emergency trips to the hospital with a kid who is through the roof in pain. My poor other kids keep asking when Samuel will ever get well. It is hardest on Daniel. Please pray for them. Today feels like the aftermath of another battle. Fallout, and picking up the pieces once again. Perhaps tomorrow I will be able to accomplish something useful. This afternoon I just feel like going back to bed. Samuel is on hour three of his nap. I look forward to the days when we won't have to live from crisis to crisis.
A thousand may fall to our right and ten thousand to our left but we know God will hold us up and keep us going. We will get through this as we have everything else. Thank you for your continued prayers.
4/5/08 Update at 1am
We need your prayers! Haven't had time to update since we are the ICU at home again. I am sending this note at 1am while I am waiting for IV morphine to finish up. Samuel's gut has again stopped working. His spleen is enlarged and liver is also starting to grow. We got an x-ray yesterday which showed a ball of poop right in the middle of his gut. It doesn't appear to be moving. His stomach is not absorbing anything including meds. His back pain is horrendous, hence the morphine which is a double edged sword since it stops the gut. We haven't seen any poop in almost 24 hours. We need his gut to move NOW. Please pray.
4/1/08
Today's Labs
WBC 32.4k
ANC 15k
Blasts 24%
HCT 36
PLT 195k
LDH 536
Phosphate 3.4
Well, these are unfortunately NOT April Fools. We figured the WBC would go up, but hoped that the blasts would not go up as well. At any rate, they don't appear to be doing anything to the other cell lines but at this point, it is starting to feel annoying. Of course the clinic sees high WBC and blasts and that equals cancer regression. I see high WBC and blasts and think we have a major problem in which these are just symptoms. The major problem I am referring to is not cancer but remains gut. We still do not have a handle on the gut. It appears to improve and then we are right back to sand. We saw sand most of the day today.
I spoke to the MD in VA over the weekend since I have no useful MD here and quite frankly, I don't think any of them know all that much in the way of interpreting and helping at this point. She thought that if we saw the WBC's continue to climb, we should get a stool culture for yeast. With all the gut stagnation, it is the prime opportunity for yeast to thrive. That would actually explain a lot especially considering this gut issue truly began last September at the end of IV antibiotics. Antibiotics give yeast a prime playing field, that is for certain. Samuel's diet should not allow for yeast to grow, with exception to the fact that as soon as the food is stagnate, yeast can thrive regardless of diet. So we will get that done whenever home health finds time for us again. I have begun to treat herbally for candida regardless.
The other thing the MD and I talked about this weekend was the fact that our MD's here ruined, then removed Samuel's colon and then gave no aftercare. They simply told us after a year or two, it would all be fine. She asked,' What did they think? His colon would just grow back?" As we know, they did not think at all. This has literally been dropped into our laps, like everything else, to manage on our own. I did some searching around for adults with anatomy similar to Samuel and found several message boards where they are having the SAME problem. Motility sucks. The small intestine and large intestine "talk" to each other and when you remove 95% of one, the other doesn't know what to do until it learns it's new job. Assuming the nerves in Samuel's colon actually work that is. Tonight, after starting some new candida remedies which should also work for constipation, Samuel pooped four times in a row, within 30 minutes. After pooping sand nearly all day, he first pooped sand, then granola, then chunky muddy snakes, then perfect turds. He has pooped twice since then and that as all been good. What that tells me is that this poop is still getting backed up in the colon, or what is left of it. The poop behind it is still in the small intestine which has adapted to be like a colon and is still being dehydrated. This is a distinct difference from last year at this time when things were moving through too fast most of the time. He would poop three times in a row but it would be really good poop and then move on to acidy diarrhea and undigested stuff instead. Tonight is the first time I have actually seen four poops in a row and each one was better. I am used to them getting worse. I hope that means we are getting somewhere. Obviously with the WBC continuing to go up, we need to find the problem and reverse it.
Something else I noticed when we were doing the Reglan was that Samuel's lung issue went away. Food has been lingering too long in his tummy since Reglan forces it to empty. That makes sense. If you are backed up in the colon, you are backed up all the way through the gut. Stomach acid also forces the stomach to dump it's contents and I have been tuned in to Samuel's lungs more now that I know what is going on and add HCL as needed and it improves immediately. His gut needs to be retrained, and learn to adapt. We need to stop all this nonsense and get into a good rhythm. My mom asked me tonight about going back to the ileostomy but that is not an option right now either. It was no picnic either. He did do better that way however and if we cannot get this under control, we may be forced to reconsider it. Once it is done, it would then be permanent. With his current activity level, I can see lots of popped, dumped bags all over the house. I just cannot do that to him either without knowing that we tried everything to make his anatomy work.
Another thing that I talked to the MD in VA about was when Samuel's VP shunt was done and it never absorbed there. She said, "That is a gut which just WON'T absorb. That takes years to get better." And it dawned on me at that point, the CSF was supposed to be absorbed through the small or large intestine. I don't know where I thought it was going to go. How is it possible that an Internal Specialist knows this and our MD's haven't a clue. Worse yet, the VP was done twice in two months time with bad results both times. That answers my question now as to if we could switch to VP. Obviously NOT. What the heck kind of medical school do these MD's go to these days anyway? Perhaps I have MD's who all got a C average. I don't know but it is annoying to, years later, get these useful revelations.
So as usual, here we are, reading, researching, trying to find a solution that will improve Samuel's life. And now we have labs that don't line up with what we see in front of us. A boy full of life and energy. A friend sent me this yesterday, " I can hardly get my head around the fact that Samuel has even survived the insults he has suffered in these past few years, and now he's tearing around the world like a little wild man! Samuel truly defies all reason; he can't be explained except through faith." I told her I have felt this way for quite some time but could not find the right words to express it here. That is what has made this awful journey so amazing. The fact that he thrives and we have been given great wisdom in order to make it happen. Monika used to say that Samuel defies logic. Isn't that the true nature of God? Logic does not explain God, only by faith to we get to know God. I know nothing is impossible for God, or for those who believe in God. We will continue to press on until we see Samuel's body restored. It would be nice if things did not always have to be so complicated but I am thankful beyond measure that Samuel feels great and his blasts still seem inconsequential. Please pray for us to gain the wisdom to fix Samuel's gut once and for all, or God's hand to heal it immediately! We continue to Praise Him for Samuel's complete healing and Samuel's radiance regardless of the numbers and quality of the poop.
3/31/08
No labs today. Apparently Home Health allowed several employees to vacation at the same time while another had surgery. I just love poor planners. I got a call bright and early to say they did not have time for us. They think they will have time tomorrow.
Samuel continues to do great and while I am dying to know what his WBC's are doing, his color is radiant and there are still no signs of anything bad going on so we were okay to wait another day on counts. He has now made it three months without needing transfusions. Oh, how nice that is! His energy continues and we have seen a bit less mucus in his poop. Still waiting to have a 24 hour period of all good poop, but today was better than yesterday. I get nervous when he doesn't poop every few hours that he is awake.
I need some of his energy! I have been having dreams just about every night where I am actively doing something and I wake up exhausted, like I actually did it all. It is getting rather annoying because there is so much to do here already and I need the energy restored. In this journey, I can only count a handful of times I actually felt burned out. Low energy certainly contributes to it. So, with that said, I am off to bed. I have a lot to tell you still but it will have to wait for tomorrow.
3/28/08
Ode to REAL poop! It has been seven days since "the incident" and we now have real poop again. Finally. It is a welcome and long awaited sight. Yes, our lives revolve around poop.
This morning Samuel pooped out the largest amount of mucus we have seen thus far. The shedding of mucus has always been a double edged sword. As Monika told me long ago, mucus is a sign of a bowel injury. I have noticed that there are actually two different kinds of mucus. The mucus which burns like fire on the way out is due to a bowel injury. The mucus which doesn't burn as it exits is a sign of healing. The past few days have been mucus which does not burn. He seems to only shed mucus first thing in the morning. After that, we do not usually see it.
Samuel has had a great day continuing to run around and play like he is making up for lost time. He has become fascinated by Pokemon so today I have had Picachu, Blastoise, Aerodactyl and Ponyta running around the house making tons of noise while doing so. If it is not that, then the babies are playing Dinos and we have three horns and t-rexes fighting. I have to remind Samuel to not break his shunt since he thinks head butting is a great way to play dinos. He has run Anna all over the house racing up and down the stairs to see who is faster. I would say he is doing great and we see no signs of cancer.
Speaking of signs, you would think you would see some sign if a person's WBC jumped up to 25k. It is amazing how that can just happen and you have no clue. I guess if we look back, we did see some things. His nose is no longer broken down from the tube. Neither is his face. He had a little pustule right where we access his port which was hanging around for weeks and it has now healed. His butt looks great in spite of pooping a LOT in the last few days. I watch him play all day taking note of every little detail from his color, to the amount of bruises he does or doesn't have, to his energy level, to his food tolerances and I notices the very slight changes immediately. Yet there is no telling what his white cells are doing.
I was thinking today that our treatment does not harm the good cells. It does not infiltrate and kill normal cells. We know it does kill cancer cells especially well. That leads me to continue to believe that the blasts are not cancer because they are being left alone and doing no harm. There were no signs of tumor lysing of any kind in yesterday's labs nor Monday's for that matter. I wonder how long we will see a WBC this high. We saw Samuel's WBC stay in the 14-20 range a good several months beyond losing his colon and all the shunt surgeries. Our former Onc also stated that once the marrow is pretty cleaned out of leukemia, it will over produce all cell lines for awhile. I am sure it will be interesting. I have to admit I like seeing all the healing taking place and cannot help but think that Samuel really needs this right now.
Samuel is still getting his steroids but we are already starting to taper. I have made some additional changes to his diet hoping that the changes will improve motility for the long run. Samuel has been off Reglan since Monday because we were really seeing no benefit. We will taper the steroids back over the next two weeks and see how the diet changes work but will remain on IV steroids to be certain he is getting the full doses. He will also stay on the IV bicarb for the next week or longer as well just to be certain that anything lingering in the blood gets the boot.
We continue to pray, praise and believe in God's plan in Samuel's life. I was explaining many of Samuel's medical issues to a friend yesterday and she was overwhelmed by it all. It is overwhelming at times to try to think of things on a long term basis. So I try not to. Baby steps. One thing I know for certain. God is not overwhelmed. He knows what He is doing here and I will not stand in the way of His work. I may not always understand it immediately, but God has always shown me things either to prepare me for what is to come, or explain things that have already occurred. This is a difficult AND yet amazing journey. We are blessed in the midst of chaos. Praise God, He is always victorious. Nothing is impossible for those who believe.
3/27/08
Today's Labs
WBC 25.5k
ANC 10k
Blasts 12%
HCT 36.3
PLT 250k
LDH 443
Phosphate 4.2
Nope. No G-CSF. We haven't seen a WBC in the 20's in so long that I had to ask three times if I was hearing right. Some of this can be attributed to steroids but not all of it. More on that in a minute.
Yesterday while looking for some info on circulating myelos and metas, or immature neuts in the bloodstream, I found a great article on WBC's which explained in great detail what each type of WBC's function is and what it can do. When I got to lymphocytes, it was especially interesting. Lymphs are the second most numerous type of WBC in the differential. They can live as long as a few hours to days, months and some even up to a year depending on the type. Lymphs can travel anywhere in the body, in and out of the bloodstream, crossing the blood brain barrier, etc. They survive leaving the bloodstream and coming back as needed unlike neutrophils which once they leave the bloodstream they live in the tissues for about a week and die. Another interesting thing about lymphocytes is that in acute stress situations they can revert back to blasts while in the bloodstream and then rapidly divide to produce more lymphocytes. This is not considered a malignant condition.
So today when I got these labs, Happy Birthday to me, I left a message for the Onc who actually called me back. He has never seen anything like this. I asked him what he would think of the labs if the blasts were not part of the count. Acute infection, inflammation, massive tissue damage and repair. Does he think Samuel could have bacteria in the bloodstream? Possibly. But given the huge neut count, his immune system is taking care of it if it is there at all. And we are still using the IV bicarb to kill anything lingering as well. Samuel feels great and has chased everyone around all night. He is not sick by any means. So, is it possible these blasts are NOT leukemia but lymphs in the bloodstream rapidly multiplying? Look at Monday's labs where the lymphs amounted to roughly 4k per ml of blood. Today we have roughly 12k per 1ml of blood. 12k of GOOD cells. I would say there has been some rapid dividing and maturing of cells going on. And you know what? Our Onc actually agreed. The blasts seem inconsequential to the rest of the counts. They are not hurting anything. Samuel's HCT is still going up. His PLT have come up nicely leading me to believe that they were being wasted in the tissues. His marrow under stress has pushed out an incredible amount of good cells in addition to NOT crowding out the other cell lines. A weak marrow full of leukemia could not do this. So I asked if blasts in general have a marker which indicates leukemia and it turns out that they can actually do a test which will tell us if they are indeed good cells which will mature in the bloodstream, or leukemic ones. I don't know if we are planning to add this on Monday yet but I think we all now want to know. Our Onc does believe that it is highly possible that these blasts are not leukemia based on the way the other counts are behaving. Samuel also had myelos and metas in his CBC today which the Onc said will mature into neuts in the next day or two. It certainly looks as if Monday's blasts matured into lymphs and if that is the case, his WBC may go up even more until things are fixed in the gut. Given the trauma to Samuel's gut, this could just be a massive healing response and God knows he needs one. It is actually exciting when you think of it in this respect. Obviously time will tell. We still have not gotten a bone marrow done as we planned to this year either but I think we might push that up if the peripheral blood comes back not malignant even with blasts. One of the Oncs in Tacoma told me last summer that the dream of Oncs for leukemia was to figure out how to get the blasts to mature in the bloodstream because then they would not be a problem for the body to manage. All normal cells have programmed cell death so eventually they would die. Better than that, they would stop dividing uncontrollably. Hmm.
We have previously seen Samuel's WBC hit 50k right before they removed his colon so I know his WBC will respond heavily to a major gut issue. When your gut shuts down to the point that you have muscle spasms and cannot walk for a few days, I would say that is major. We saw a lot of mucus passed this morning. Again, mucus is white cells being shed. He has had some good poop today but it is still mixed with sand and granola, but more granola than sand. It is also starting to smell right again rather than being odorless. So we are making slow but steady progress. With such a grand WBC, his butt is looking great so that is a bonus. He also is continent again and that is encouraging. We were going through many undies a day and today he has only had to change once.
It is just after 10pm and once again, it is just Samuel I up and he is conning me into staying up longer. It snowed a few inches here last night. The snowflakes were huge. The biggest I have seen in ages. I was just commenting to Mark that I wished we would get one more big snow like the one we enjoyed in January. Delma must have pulled some strings in Heaven to get me a white birthday. Looks like we will get even more over the weekend. I hope so! We want to make another gigantic snowman.
Please continue to pray that Samuel's gut is healed and restored by this burst of WBC's. Praise God! Only He can take something bad and make it good. May God use each and every one of these WBC's for His purpose and we call all those blasts GOOD healthy cells being raised up to do God's work of restoration in the Name of Jesus, Amen.
3/25/08
Samuel was able to get out of bed on his own this morning and sneak downstairs without anyone seeing him. I thought for sure I was going to be carrying him down but he did it on his own. He needed some help walking this morning and was really enjoying being carried and fussed over. Let me say that none of this was enjoyable for him late last year. He forgot midmorning that his legs were hurting and I watched as he was pushing Anna around in circles in the chair. He was running. Not sore at all. I called Mark to let him know that he went from walking like an old man, crawling because it was faster to running in less than two hours this morning. We were very happy about that. His boundless energy is back and tonight I have been telling him to once again settle down as his energy is limitless at times.
Things with his gut are slowly coming around. We have seen more granola poop with bananas than sand so that is good. Even a few chunks with granola here and there. By the way, the thought just occurred to me that you probably think he eats a lot of granola since we describe his poop as looking like granola. He does not eat granola at all but somehow what he is pooping looks like granola when it is in between sand and good chunks. Granola is better than sand. Anything is better than sand! The swelling on the inside has to go down before we will see some better looking poop at this point.
Cells in the small intestine are renewed every seven days give or take and based on that, we should be in a good place by Friday assuming things continue to improve. I am hoping to maybe even see some better quality poop by tomorrow the way things are going. He has only lost a pound over the incident thus far and he shows absolutely no signs of the weakness we saw late last year. We are very lucky because we knew exactly what this was and how to reverse it quickly. Had I known what I know now back in September, I think we would have had a lot less time seeing blasts and Samuel would have had a lot less misery.
Samuel's color continues to look amazing and his lips are actually red now. It has been awhile since we saw color in them. Good color and energy are always encouraging.
I may check in with the GI tomorrow before she is gone for ten days but it looks as if things are on track currently. I have a whole new list of questions and conversations for her that will have to wait til a later date. I have told her on several occasions in the last two months that she is now the GI and the Onc. My Onc wants us to come in for a face to face and he doesn't realize that we stopped coming in when they stopped being helpful. We do not do well checks. If Samuel is well, you don't see us, you don't hear from us. Unfortunately, Samuel is either doing fantastic or dying. There seems no in between. The Onc has nothing to offer us and obviously spends little time thinking about our situation. I actually think he is frustrated because he doesn't know how to help and we don't lean on him the way other families trust their Oncs. I do notice there is some animosity with some RN's when I call but it has been lingering ever since this began last year. We don't play the game their way and they don't like it. Sadly for them, I don't play games at all so they don't have much fun with me. I can tell you I am quite tired of the cancer game and lifestyle. I refuse to participate. I continue to get the impression that they are all just waiting for us to fail. I guess they forgot that if this was left up to them, he would have been dead long ago. I do find it curious that it annoys so many of them that Samuel continues to thrive in spite of everything.
Things were business as usual around here today. The big kids did school, the babies did their thing. Mostly ran around and played to make up for the lost days. I spent my day teaching them, parenting them, doing business work, researching more gut things, making Samuel's food, taking care of his tummy, wiping his butt for the 50th time, running IV meds running tube feeds, dinner, laundry, etc. You know the usual. So much to do, so little time.
Thank you for your prayers, please keep them coming for wisdom to know how to STOP this vicious cycle. Praise God, HE is our answer. Now let me HEAR the answer clearly. Enough is enough.
3/24/08
Today's Labs
WBC 10.4k
ANC 4784
Blasts 8%
HCT 35
PLT 199k
LDH 311
Phosphate 6.3
Well, what a shock, I say sarcastically for those who don't know me. Here were are smack in the middle of a total GI crisis and now we see blasts again. I cannot say I wasn't expecting it. We certainly don't enjoy seeing them but it helps a lot to know why we are seeing them. We haven't seen a WBC in the 10's since the ileus in January. Obviously, his immune system is responding to the GI crisis again.
Wow, look at that HCT. How long have we been waiting for that! It does feel like all cell recovery we see has been bittersweet in one way or another. Regardless of what is going on in his gut, Samuel's color looks beautiful. I think the PLT are all in the gut. PLT go to the site of inflammation so that probably explains the big drop last week when this was all starting. His LDH is actually down from last Monday which is amazing considering everything going on.
Samuel is walking like a stiff old man and crawling when he needs to get somewhere faster. He thought he was going outside to play like that this afternoon. I also caught him doing push ups just for fun. Apparently he did not get the memo he is supposed to feel sickly. Things are slowly, SLOWLY, improving. We added IV fluids to the regimen today with more bicarb to help neutralize the phosphate again as well as the toxic gasses and bacteria floating around in his blood. I think IV bicarb is my antibiotic of choice. I really need to know what area of the gut absorbs phosphate because then we would know which part to look at as problematic. Hopefully in the next day or so we can start seeing some real poop again. I saw remnants of poop this afternoon but mainly we are still seeing sand. Sand, sand, sand and a little granola here and there but the amount is increasing so cleanout is in progress, finally! Oh, there was also some totally undigested banana but at least they came through in a reasonable amount of time. I think I like undigested over too much digestion resulting in sand. At least undigested does not cause pain. I have also used cooked pureed beets and we have yet to see beet poop. None so far. I recall very vividly Samuel's last dilation done in Seattle which resulted in ileus about ten days later and took about a week to resolve. This situation feels like that in that it is resolving, but very slowly. We will see labs again on Thursday to see how things are progressing at that point. My guess is that as things resolve in the gut, the blasts will disappear as they have previously. I am sure we would not have wanted to even know that the CBC looked like on Friday. Please continue to pray for Samuel's gut to start working again and that we can find a reasonable long term solution to it shutting down for no apparent reason.
We upped his steroid dose to see if this will regulate things in the gut more quickly. My GI is on vacation after Wednesday and I actually spoke to the Onc today and he is on vacation next week as well. So we basically have no useful MD for next week. Hopefully, we won't have to need one. My prayer is that things get back on track quickly. My Onc did say he actually wanted to see Samuel in person sometime soon since he is ":out of the loop." I neglected to mention the many phone messages I have left which he forgot to return. And of course the call ended with him saying we need to start some kind of "treatment" soon. You know, because we are not treating at all right now according to their standards.
At any rate, Samuel's gut needs God's hand immediately to turn this around quickly. Please continue to pray and praise God for the answers. I need to hear his voice of wisdom to know how to stop this vicious cycle once and for all.
3/22/08
Yesterday was the kind of day I just want to rip from the journal history and my memory right now. A little too deja vu for all of us.
Samuel woke us all up at 5am screaming that his legs hurt. Screaming because he could not walk. The muscle pain, weakness, and spasms returned with a vengeance. Worse yet, nothing helped for long. I spent the entire day carrying him back and forth from the bathroom, the tub and the couch. Now that he is 44 pounds, it is a lot different than it was in November and December when he was 35 pounds. He is heavy! Mark went to work briefly only to return home to help because Samuel was just miserable all morning. The big kids were lucky enough to get to go to Mark's parents which left me, Samuel and Anna here to try to deal with something I thought we had closed the book on. Samuel's gut had once again shut down almost completely. Only difference between this time and the one in January was that in January his gut was pretty empty. Yesterday he was full of poop which was fermenting causing the toxins to enter his bloodstream resulting in muscular pain, cramps and weakness. It was miserable and made me once again wonder, how did we manage this for months when we did not know what the issues were? At least yesterday we know.
The saving grace of the day was that we were going in to see the GI anyway. Samuel was not able to walk or stand and she was very unhappy to see him this way. After a lot of talking about the past month's history, labs, med changes, etc, we determined that Samuel is probably back to what she originally thought was going on with him two years back. Pseudo obstruction. Basically part of the small intestine just decides it is not going to work and is paralyses. Any poop that then makes it through is pushed through by gravity and other foods behind it causing the hyperabsorption of certain minerals and toxins. Samuel's biopsies were all normal so this problem is not the result of a food allergy causing irritation. It may well just be that his gut is compensating for the loss of his colon by being extremely slow, slowing more when his anus closes, making things worse. Then the culmination is when foods linger and ferment too long in the small intestine leading to inflammation and paralysis of that part of the gut. I mentioned to her the thought of Reglan being useful for the longer term but that steroids actually offered some relief right up until his gut just stopped entirely. They do not typically give steroids for pseudo obstructions but she asked herself out loud of this info might be of use for some other patients. They usually give abx to kill any bacterial overgrowth and wait it out. Abx are not on the table for us obviously. But we did talk about steroids, given in a large hit it hard and fast dose to stop the swelling and then try Reglan for a longer term solution. At least that would tell us if Samuel's gut issue is simply the fact that it has not yet adapted. At any rate, the most important thing to is clean him out asap. We talked about Reglan vs. Go Lightly for cleanout. I wasn't certain how well Go Lightly would work given that he has no osmosis at all. She wasn't either so we chose to use Reglan IV and steroids IV simply because he is not absorbing anything for the time being. She also gave me good info on how to use large doses of steroids to immediately stop a flare up, as well as how to mix my own Go Lightly should we need it. So, it was a helpful appointment. Much better than, "Oh, that is just the cancer taking over." What we know for sure is that if we do not get this under control immediately, the leukemia will be stimulated in response to the toxic overload.
Samuel ended up with three doses of baking soda yesterday to neutralize the toxins in his blood. Our GI actually liked this idea telling me that as the food lingered in the small intestine, the ph would continue to drop lower and lower. Drastically changing the ph would only be a good thing. The fact that it kills cancer is just an added benefit. There is a lot of new buzz on baking soda and maple syrup binding and causing cancer cells to eat up the sugar content of the syrup which drags the baking soda into the cell raising the ph so high that the cell just falls apart. I wonder how well it binds to breastmilk? At any rate, in the grand scheme of cancer, it will get a shocking nuke this weekend between large doses of steroids and baking soda plus breastmilk, MSM and cesium. I am sure Monday's labs will be interesting. We are doing a five day burst of steroids and then stopping to see what the Reglan will do on it's own. We will be doing as many days as it takes of baking soda to neutralize the toxins roaming around. It is amazing how much relief a tsp of baking soda gives within minutes but you can just watch as the toxins build up again in his system. Life and death is in the gut, no doubt about it at all.
Today, Samuel still cannot walk but he is not complaining too much. Praise God for this turn around. He was able to sleep last night and is taking a good nap right now. He has been happy all day and seems to be enjoying the extra attention. We are working on the gut cleanout but there is still no osmosis at all. Nothing. It seemed worse this morning and better this afternoon. He is hungry at least so that is a good sign. It is extremely annoying to have a GI setback but you know the devil always comes to steal God's thunder. I recognize this for what it is and rebuke it. We refuse to lose Samuel's restoration. Can you all please pray that this resolves immediately and that Samuel's pain stops? Samuel's gut NEEDS to work right now so that he can rid his body of the toxic burdens.
Praise God HE is the answer. May you all enjoy Resurrection Day. Thank you, Jesus, for your sacrifice. We do not have to live like this because YOU paid the price for us. Restore us according to Your will and word. Amen.
3/20/08
Samuel continues to do great. I continue to be annoyed with his gut. The last two days have been pretty bad again with mainly sand poop, meaning it has fermented way too long. Too long to the point that one day he had leg cramps and the next he had a headache over it. I looked back at the journal history and can easily see that as we tapered steroids, things in the gut went backwards. Neutrophils went up, monos went up. It irritates me because we just cannot get a handle on this. Samuel is fine except when he has pain associated with this. He immediately remembers November and December when this was at it's worst and says he feels sick like he did than. Fortunately, rosemary tea stops the symptoms dead in their tracks.
I am going to have quite a list of things to go over with the GI tomorrow. Mark usually waits in the van with the kids and hates me by the time I return because it takes SO LONG. I told him he should go to Costco instead of waiting. Our GI spends as much time with you as YOU need and I think the office got smart and makes all Samuel's appts at least an hour long and the last of the day if possible. At any rate, I don't see how we will avoid steroids at this point. The only positive I see in that is the anti leukemia benefit. Other than that, there is drawback after drawback. My older kids see the commercials on TV for various new medications and say, "I thought they were trying to help people," when they start listing side effects. Even they know to look for a better option. If we could expect to only need steroids for a few months, I would feel better about it. But we don't know. I will be interested to see what the biopsies show, whether this look like allergies or irritation to the lining. There was no visible swelling. Steroids help with inflammation and if there is no swelling, they should not be useful. So, there must still be swelling somewhere because I gave Samuel a small dose yesterday and one today and he is already better. We certainly do not want to go back to the awful pain episodes ever again. Our GI understands our issues with steroids and also understands my theory of conventional medicine. If you need it, you need it, but get off it asap. It will be interesting to see if she has any other ideas tomorrow but at this point, the writing is on the wall I am afraid.
Tomorrow marks the nine month anniversary of Samuel's relapse. We have had RN's coming here twice a week for nine months, sometimes more often. This is our first week of once weekly visits and it feels strange. Mark asked who was coming today. Uh, no one! Oh yeah! Samuel has also finally passed the one month mark of labs with no blasts. I forgot to keep track of this because things have felt so promising and we have been busy with other things such as living. I noticed this as I was looking back for other numbers. We have made it almost three months now without transfusions. With the cost of gas and loss of income we have lived with since January, this is a huge blessing indeed. One month from today will mark four years of dealing with cancer and the consequences of chemo. One month from tomorrow, Samuel will turn six and be at the ten month anniversary of his relapse. I should probably feel sad and emotional about it, but I don't. I feel thankful to God for his many many miracles. I feel proud that we have made it this far and Samuel continues to do so well. Many things that happened should have been Samuel's demise. Yet, he is full of life feeling better than he has in years. I look back at all the things we have survived and know it was God who held us up, kept us strongly united as a family and brought forth angels on earth to help at the exact time we needed it. I would not wish this life we have lived on anyone and continue to pray that all Samuel has suffered has not been in vain. Perhaps one day a child with no conventional medical hope will find hope in Samuel's miracles. As for me, I continue to cherish each day our family remains intact and wait for the days to turn into months and years beyond cancer, blasts and gut wrenching crises. I continue to marvel at all God has taught me and wait upon Him for continued wisdom and insight.
With the Resurrection Day almost upon us, we take time to thank the Lord for His Son Jesus Christ, His Sacrifice, His unending love for us, and the resurrection so that we may always have hope and faith. God is our hope in good times and bad. He has everything we need. We praise God for the restoration of our lives and continue to hold fast to His promises of divine health in every part of Samuel's body. May it continue forever, Amen!
3/17/08
Today's Labs
WBC 7.2k
HGB 11.3
HCT 33
PLT 264k
ANC 3800
LDH 333
Monos 7%
Samuel continues to run circles around us. He had no nap today and you would never know the difference. He looks great color wise as evidenced by his labs. His lips are starting to pink up nicely as are his cheeks. We haven't seen HGB in the 11's without the help of transfusions in about a year. I believe 2/07 were our last good labs from last year prior to relapse. I have to say that I am loving seeing more red cells. It is such a positive sign. I think they would be even higher if we could get Samuel's gut to behave....but
Samuel's gut problem continues much to my irritation. I added back MSM last week to his regimen hoping that it would help and not stimulate the WBC's much, or blasts for that matter. Last Thursday, Samuel's WBC looked better than it has in awhile and the MSM even seemed to help the reds. Today, same applies. The PLT, however, are a different story. MSM has an aspirin like effect on PLT and with the dosing Samuel was getting, apparently we will need to back off. A lot. Samuel was especially sensitive to aspirin...don't ask me how I know. Between MSM, mega garlic, and tons of omega 3's, I think we hit overkill on the platelet aggregation. MSM is powerful stuff for certain! The MSM seemed to help a lot last week and into the weekend too with the GI issues. But yesterday, I got mostly sand. Then mucus again which never bodes well for the LDH being low. I am also starting to see a huge correlation between kefir and LDH. A major part of kefir is lactic acid and LDH is the measure of lactic acid in your blood. Every time I have given Samuel his probiotics in kefir right before labs are drawn, or about 30 minutes before, we have seen LDH in the 300's. Interesting. That seems to account for the rise in energy Samuel seems to get after being fed kefir. Lactic acid is converted to glucose after all. Energy. When we have labs drawn and Samuel is being fed at the same time, we see a high glucose come back which is later normalized by his body so it seems logical that if you consume lactic acid, it would register in your blood immediately and later be processed by the liver. Food for thought at any rate.
Today has been better gut wise but we are still seeing sand. Or beet sand as it were. Steroids look like they will be back on the table again which sucks, but we cannot allow things to continue like this either. I don't spend precious money on foods and supplements just to flush them down the toilet. Samuel has managed to not lose weight over this, so in the grand scheme of things, it is not even close to as bad as it was. But when we are seeing sand poop, he is incontinent. He easily went through 5-6 pairs of undies today. That is frustrating for him. When we see sand, we see inflammation in the gut. loss of nutrients, and mucus shedding. When we see the GI Friday, I plan to try to work out the least possible dosing on steroids for Samuel. Between that and the steps we are already taking, I hope to find a good minimal dosing. Things are certainly better, we just need to stop the flares of irritation. It keeps feeling like we get a handle on it, then lose it again. Like we are right on the edge, just need something to nudge things over. I still think all this comes back to his 5 inches of colon, and what ileum has adapted to act like a colon. They are over compensating and retaining poop too long tripping up the whole gut. I know this will improve once things with his anus stop closing and his counts remain strong.
I haven't updated as much because we are enjoying life together, doing tons of schooling and taking time to relax as much as we can in between. The big kids test for their grads at the end of April and we are cramming as much in as we can. Today, they both came to school without their brains so it was a LONG Monday. Hopefully, they will remember their brains tomorrow and get with it. Anna and Samuel continue to play non-stop all day long and it is still an amazing joy to witness. I continue to praise God for His miracles in our lives. Each day is truly a gift and not a day goes by that I don't remember that truth and thank Him for it.
3/13/08
Today's Labs
WBC 7.5k
ANC 3600
HGB 10.9
HCT 31.9
PLT 395k
9% Monos
LDH 282
Last night I found myself on many occasions just praising God for Samuel's healing. I praise God daily for this, but last night I was overcome with praise. One of Samuel's followers who e-mails me after every update has recently sent me a note that said reading the updates was like God saying, "Look what I can and will do for my faithful." Look at these labs today. Just look and marvel at God's work. These are the best counts we have seen since the relapse. We were expecting PLT to be better today and also see Samuel's HCT and HGB higher than they have been in months. We are so thankful to see his WBC well into the normal range with many more functional lymphs to help heal his nose and butt. Our God is nothing less than amazing. We are so blessed to continue to watch miracle after miracle in Samuel's life. Because labs have been so promising and Samuel is just feeling great, we will transition to Monday labs only from this point on. I still have not heard from the Onc. Our hope is in God's medicine, not man's. Perhaps he got the memo. There is not much to say at this point. I will continue to get directions straight from Samuel's maker.
Samuel's gut continues to be off and on. We are still seeing sand poop, granola and then good poop. I am making some new adjustments in his supplements and foods to try to get things under control as the last thing we want to do is have to use steroids. His LDH, ANC and monos are a continuing indication that his gut still has inflammation and damaged lining. We want this to heal immediately in the Name of Jesus. We ask and believe for complete restoration. This problem has gone on long enough. We have an appt with our GI on 3/21 and my goal is to have this resolved by then. If not, then revisit steroids to allow more healing to take place, then wean off again. I tried the beet experiment last night and got beet poop within four hours, which is a good sign. However, some 18 hours later, I got sandy beet poop so somewhere food is getting hung up and sitting too long still. This is not as bad as things were just a few months back when I tried this experiment. Back then, I never got red poop at all. It was all black and most likely days old. So things are moving through within 24 hours at least but we strive for 4-5 hour transit times from top to bottom.
Samuel continues to run circles around the rest of us. He continues to thrive and feel great. Last night, as everyone retired about 9pm, he stayed up until after 11pm coloring and watching TV in his room because he wasn't tired AT ALL! The thought occurred to me today that he probably doesn't need naps anymore either. He has been running non-stop today and even though his gut isn't being totally agreeable, it is obvious the cesium is increasing his energy again. This is a great thing. I look forward to many more years of Samuel outrunning us and feeling great. He deserves to have a life and he WILL have one. Praise God!
3/10/08
Today's Labs
WBC 4.3k
ANC 1978
HGB 10.4
HCT 30.9
PLT 311k
LDH 273
Things look grand today. Mark and I expected Samuel's PLT would hit the 300k's this week and were not disappointed. I mentioned yesterday that we were hoping to see the neuts go down and they have. This is good news for Samuel's gut because it means the inflammation is down. Samuel's gut continues to do just fine today and it looks like the herbal steroid is doing it's job. The green tea is also working well for what I was hoping it would do for him. He was 42.5 pounds today after losing a half pound last week from the GI issues. Good to see him gain it back and then some this week. Samuel's reds are continuing to slowly trend upward and I imagine that LDH will be lower come Thursday once we get a few more good GI days behind us. Samuel's chem panel looks really good today showing he is absorbing all the new mineral additions well. His phosphate is once again normal, barely, but that is just where we like it. His Alk Phos is rising slowly so hopefully that zinc is starting to store up better too. I am not certain why his overall WBC is not higher but when you do the math between Thursday and today, all that is missing is the additional neuts he had last week and we don't need those right now. He could use a few more basic WBC's for healing though since the skin around his nose where the tube is is breaking down. His butt could use a little extra healing though it is not terrible.
The nose breaking down is annoying and we all long for the day Samuel can have another G-tube done. I hope that by summer we can consider the tube again. We are also starting to think that the NG is the culprit for Samuel's continuing lung gunk. I asked for a larger tube simply because of the food thickness and the lung crap started when it was done in November and hasn't left since. Our RN today thought it could be irritating his throat and causing extra mucus. We have ruled out liver and spleen causing the lung irritation since they are now normal. Samuel's abdomen over the last few days has really started to look much more proportionate rather than like an hourglass which is full on top and empty down below. The last thing to remove from the equation then is the tube. When we went hiking yesterday in the cool air, he had no wheezing issues. It is worse in the house or when he is hot. At any rate, it will be a great day to say bye bye to this NG. Samuel asks about getting a new tube done frequently. His scar is really starting to fade now and that bruising that he has carried around for the past 7 or so months from the cellulitis is also starting to go away. Finally! Another sign of blood LESS messed up. Signs of healing everywhere.
When we were hiking yesterday, Samuel wore his new snow boots so he could splash in the water and mud. I noticed that he did not limp in them or walk incorrectly. That made me think we need to buy him a new pair of every day shoes since he might have funky indents in his regular shoes he has had over a year now. We will have to try that and see if the walking issue corrects itself. I also cleaned out his T-shirt drawer and realized I need to throw almost every shirt out and buy new. Not that he needs a bigger size because he doesn't. They just remind me of him being really sick and I am ready to toss out every possible reminder. Several are stained from the oozing of the g-tube site. Since he mainly hangs out at home in a T-shirt and undies, they are well worn. Lately he decided he will wear actual pajamas again so the shirts are getting a break.
RN Kelly asked me today what meds Samuel is on. None. How long has he been off them? Probably ten days. When do we plan to start back up? I don't know. Probably never. I haven't decided. I told her she could have the Onc call to discuss it but I am still waiting on that call. I haven't talked to him since January or so. Their medicine is supposed to be complimentary to ours and as we have seen, the MTX really attacks the PLT. 6MP really attacks the red cells. Whether or not this will improve as the marrow recovers I don't know. Since the Onc was certain that neither drug would affect the other cell lines recovering, his opinion is not useful because they both obviously did disrupt things. I think I would like to see more marrow recovery before adding anything at this point. It is really nice to get called with good labs. I always know they are good because they call me, I don't have to call them. We will see labs again Thursday and then transition to once weekly labs from then on. Everything I needed to see show up on paper manifested today so as far as chems go, I know we are on the right track supplement wise. If we decide to add any chemo later on, then I imagine we will check more often.
School has been going great. Most of the new things have arrived and we have started them. I cannot tell you how nice it is to be able to concentrate on something else besides cancer. We got a lot accomplished today. Hopefully we will settle into a schedule in the next week or two so we can get more accomplished in less time. So much to do, so little time it seems. We are all tired at bedtime....except Samuel who continues to be the energizer. If you have to have cancer, you should feel as good as he does. It is amazing. Kelly asked how long it has been since his relapse. Just about nine months now. He feels better than he has in years. His marrow recovery looks much better than that tiny glimpse we got back in September before everything went backwards. His PLT got to 314k before going back. We should break this record this week. His reds never recovered so we have already seen much better recovery there. I think what we have left in the red cell recovery is time and gut at this point.
Praise God for Samuel's continued restoration and almost two and a half months transfusion free! Transfusion free for life works for me. Thank you, Jesus!
3/9/08
It has been another lovely weekend. We took a quick hike this morning and Samuel did very well. We haven't been to this particular trail since gathering nettles late last spring and I remember Samuel was hardly able to keep up. That was before the relapse. Today he had no issues keeping up. He got tired but recharged quickly. Bottom line, we did not have to stop 50 times to wait for him to catch up and he did not have to be carried. We probably walked a bit over a mile up and down small inclines. Awesome! The big kids enjoyed making themselves hot chocolate in the woods and Anna just HAD to have soup. The nettles are just starting to poke out of the ground, much earlier than last year. So we will go back next weekend to do some gathering for tincture. I am just about out of last years tincture in which I probably had about a quart. This year I plan to make several quarts so I don't have to sparingly use it. It should add quite nicely to my anti-inflamatory tincture mix.
I used up all the breastmilk in 24 hours. It is amazing how much Samuel is energized when we give him large amounts of milk. If you want to see a really potent energizer, add cesium and steroids to the milk. He can climb anything and turns into the Super Pooper. It looks pretty obvious based on his gut function that we had at least some GI benefit when Samuel was on steroids. We are working hard to ease the inflammation in there and hope we will not have to reintroduce steroids to get his gut to behave. Things have looked pretty good today though. He has been able to actually get full feeds rather than half because nothing is moving through and he is already full. It occurred to me that Reglan would actually be a benefit to help with motility after dilations when things are slowed. If my GI checked her e-mails more I would send her a note. Hopefully, it won't be necessary. Caffeine works well to speed things up so I have opted for green tea at the moment since it is a powerful antioxidant and has good effects against leukemia. I really love herbs and foods that have multiple useful purposes! I have mixed an herbal steroid tincture that I have been slowly introducing over the past few weeks that I hope will start having an effect if it hasn't already. In my daily education about the gut, I just read today that many diseases are worsened by food lingering too long in the gut. We know that first hand. Inflammation adds to the longer transit times so we need to get this down. We hope to see a gradual decrease in neutrophils and monos because that will tell us things are going the right direction. I think Samuel's ANC has notched up and up as we decreased steroids so there is definitely a connection.
Things continue to feel more and more "normal" by the day. Certainly Samuel has not felt this good in years. It definitely feels like we are standing on solid ground. Life has passed us by over the past years leaving not too many good memories behind and we are trying to find inexpensive ways to make the best of our situation. My horse, Bud, whom I have not seen in now almost three years is going to be 15 this year. I have had him since birth. He lives over an hour away. We have decided to try to find a place nearby to move him back home. It would be really nice to be able to fiddle with him again and the kids are interested in learning to ride, etc. Anna especially has a love for horses. She said she wanted a pony for her birthday. She doesn't realize we already have one. Well, But is not actually a pony, but he is short enough to come close. He really loved the kids last time we were there to see him. If anyone knows anyone willing to rent pasture to a well behaved horse in or near South Prairie, LMK.
We are also hoping to do some real camping this year. Get out of this house here and there. Samuel's sore butt is a non-issue these days and with his new stamina and energy, he is more than ready to live a little. We are all tired of being cooped up in this place. We hope to start doing some small trips here and there VERY soon. That would help ME a lot, not to mention everyone else. It really feels like we have not been able to go anywhere fun in so long. It is time to make some fun memories in places that don't remind me of Samuel being sick.
Labs tomorrow and a very busy school week planned. Samuel is doing very well in his books. The big kids are also doing great. School is really fun and I am looking forward to the new things we are doing this week. Praise God for continued restoration to Samuel's body and our lives. I will take another hundred years of it.
3/6/08
Today's Labs
WBC 5.6k
ANC 3360
HGB 10.2
HCT 30.1
PLT 232k
LDH 282
Monos 7%
Wow! Labs just continue to look awesome. Look at those PLT! We haven't seen PLT this high since summer of last year. All of the funky red cells are now GONE from the differential so we can assume the culprit then is 6MP. Samuel has been off it about a week now simply because of the gut issues. I listed monos because lots of monos can tend to go along with gut inflammation. I am certain the LDH is reflecting this as well. Samuel's liver enzymes are back to normal and all chems look great. Just awesome news.
Samuel's gut is still recovering from slowing down due to his anus closing. Hopefully in the next day or two we will see things working faster and better. Right now there is lots of good poop and a little bit of sand here and there. Thanks to Asha again for another huge load of breastmilk today. Just in time for gut cleanout and helping get things back on track there. I imagine we will switch to all milk for the next day or so just to give him a good healing cleanse.
Samuel continues to feel great and look great too. The GI did his scope while we were there and gave me more pics for his baby book of a very healthy looking gut. She took biopsies as well so we will wait to see what they show by the end of the month. I imagine they will show lots of WBC's though due to the issues he is still having. Not a big deal as long as things continue to improve.
Praise God for RESTORATION. We believe we receive and are watching it manifest. It feels GOOD.
3/4/08
Praise God for a good day with good reports. Although we had to wait a LONG time for Samuel's procedure, the report which came after was worth it. Samuel's anus had only closed to a tight 15 which is awesome considering I thought it would be much smaller. Samuel's liver AND spleen were not palpable which means they are both back to normal size. In the grand scheme of cancer, we have not seen his spleen return to normal since the relapse so this is AWESOME and HUGE news. It is not swollen from cancer or digestive issues anymore. His liver being normal is just an added bonus. Samuel's gut is already showing signs of returning to normal tonight. In other news, Samuel's ANC came back at 67% of his total WBC and remains strong. No blasts. His energy continues to be amazing. We hit IKEA on the way back to get Anna's last present, a piece of furniture. Samuel walked through the whole store and in fact pushed Mark around so he would walk faster. There is no issue with his stamina. This just hours after sedation. He never got tired or wavered. He is ready to do some hiking and we really think he feels as good as he did a few years back when we hiked at the Hoh Rain Forest and he was the leader on the trail outtalking everyone. He might perhaps even feel better. The transformation we have witnessed over the last few months is nothing short of miraculous. Glory to God! Praise Him for his faithfulness to our prayers and hard work.
3/3/08
Today's Labs
WBC 4.6k
ANC 3082
HCT 30.9
HGB 10.1
PLT 182k
LDH 268
Once again, no differential on that WBC so we don't know what is all in it yet. Tomorrow we are going to Seattle for Samuel's dilation and it is obvious that it is a week overdue. Tomorrow marks six weeks since the last one and he started having issues at the five week mark. I am certain that the LDH rising is evidence of the issues in the gut as well. PLT going up is always a good sign in the grand scheme of things. Some other interesting things to pop up today were that Samuel's liver enzymes are slightly up. Nothing drastic but interesting that he has been off of steroids for a few days and now they go up. We will see what the GI thinks of his liver and spleen size tomorrow. She is also planning to scope his gut to see how things look from the inside. Things have really slowed down overall in the gut department. We are really going to have to be proactive about resolving this. The GI's office ordered us the proper dilators but we have never received them. The ones I originally got from the Onc clinic are not the correct shape so are unusable. I watch things slow down in the gut and I start seeing Samuel slow down, get grumpier and see less cesium rushes. Don't get me wrong, he still feels great, but I can see a difference even if it is slight. We are very glad to be going in tomorrow. Hopefully, it won't take Samuel's gut two weeks to right itself after his anus is opened like it did last time. I don't think it will. We have seen some sand poop, which is bad, but we have seen lots more granola, which is better and even a good turd here and there. It hasn't progressed to terrible yet.
Anna had a fun party and the kids enjoyed the weekend. We did some shopping which was enjoyable because going places for Samuel and me is still a novelty. Samuel got to go to the pet store just so he could see the fish, snakes, reptiles and especially the yucky tarantulas. We did not pick out any new pets although I really like the bunnies and birds. Our dogs would just eat them. We went to the bookstore too. Samuel is always on the hunt for a good dino coloring or activity book. He colors non-stop some days so we are constantly trying to find books to keep him occupied. The big kids needed shoes so we did that too. Samuel made the whole trip without having to poop once which is saying a lot! It was almost like being normal. All the kids even behaved well. We also got up to the school for some big wheel riding. The weekend was just really nice. Being able to go places is nice! The weather improving so we can spend more time outside is great.
So as things are starting to feel like a "new" normal, we are starting to gear up our schooling efforts. The big kids have gotten to slide doing the bare bones subjects so we are broadening the horizons. Kaysha has decided to learn Japanese. I have spent a number of hours comparing different curriculums and books to pick things that are appropriate for each child. We have previously bought some materials that we have found we hate so they are just shelved for the time being and we just don't do those subjects. I haven't had time or money to invest in getting things that will work for everyone. This past week, I actually had both and got most of the choosing and purchasing done. Samuel also got new kindergarten books. He is ready! He is reading small words already and writing them. He writes a word, brings me his board and asks if "I" know what the word is. He is also starting math. Everyone is excited about the new stuff coming....except Daniel. Oh, and typing is on the list. Daniel's penmanship SUCKS. It is worse than mine and I can at least say I am half bind and it is a good excuse. He is just going to have to type everything I am afraid. Anyway, it is fun and exciting to feel like things are stable enough to plan for the future. I could really get used to this. I pray and claim Samuel's healing, that the worst is behind us and that we will move forward to Restoration. God lead us to solutions to these pesky problems we seem to be dragging along. It is time for Samuel's anus to stop closing, his gut to work well 100% of the time, his body and organs to full heal and all those cancer demons to die. In the Name of Jesus, AMEN!
2/28/08
Happy 4th birthday to Anna! We have decided to unofficially do birthday weeks instead of celebrating on just one day. Presents come early and cake comes early. The official party is this weekend with family. After Samuel missed his 2nd birthday party because of his cancer diagnosis, I think we unconsciously make certain that our kids have their birthday's recognized for more than one day. There will not be one day of Anna's life to date that she will remember when Samuel's wasn't sick. I hope and pray that all changes this year and we leave this life of demonic bondage behind. Anna has been the best sister she could be to Samuel forgiving him for all the times he took everything out on her. They are great friends today. I remember carrying her and watching Samuel trying to keep up with Kaysha and Daniel, but he could not. I always thought she was to be his friend, the way Kaysha and Daniel are friends. And she is. It has just taken a lot longer to see manifest than I planned. I am so glad she has been there for him and that really, all the kids have been there for each other and for us. The celebration of Anna's birth will go on through the weekend.
Today's Labs
WBC 5.2k
ANC 3900
HCT 31.6
HGB 10.1
PLT 161k
LDH 244
Unfortunately, these were taken to the lab too late to get a differential so I have no ANC or other parts of the white count back. I do not expect a bad report. Cancer comes to steal, kill and destroy and Samuel is having none of that. He just continues to heal. Things are trending up nicely and I now suspect that the 6MP may be the culprit in Samuel's red cell issues. While his red cells are slowly coming up, they are still abnormally sized. 6MP messes with DNA of cells as they divide and may be to blame. I am going to half the dose and see if things don't improve. His phosphate came back up to 3.6 from 2.5 and that is significant but I will probably still have to supplement it since phosphate is important in every cellular function. His Alk Phos remains low based on the GI's chart. I am thinking the LDH spike on Monday might have been gut related since his gut continues to be hit or miss. I have seen some mucus pass again too. This will at least be righted next Tuesday. Samuel also hit the 42# mark on RN Kathy's scale today and this is the point where I told all the RN"s we can celebrate. Anything he gains after this will just be icing on the cake. Let me tell you that 42 looks so much better than 34. I think that by tomorrow Samuel will be finally off steroids. He was on them most of December, all of January and all of February. Once again, that is a long time and we have certainly seen some funky things in the labs while going off them. Now, we just need to keep everyone healthy and give his body all the nutrients it needs to get healthy, kill the remaining cancer, grow, thrive and finally have a life that is good beyond three months at a time. Amen and Praise God for that
2/26/08 PM update
Getting info from MD's when they are not in their office face to face with you is like pulling teeth. Finally, I got the answer I needed from the GI today. Samuel's liver was enlarged at our last visit Feb 1st as well and relatively unchanged from then to last Friday. So whatever it is, it is not new. And it was obviously enlarged well before that because as I say often, it did not just happen overnight. So our Onc apparently missed this since it is not charted anywhere. Based on this info, I canceled our appt with him tomorrow. I don't need to go in to have someone double check something that has been there and they apparently did not notice. Interesting and annoying that it wasn't mentioned to me at either of the last two appts with the GI. So, now I imagine this stems back to the starvation. The ultrasound was not scheduled and at this point, we may not even need one. I believe this situation is probably rectifying on it's own. It will just take more time. This hasn't really bothered me too much in the grand scheme of problems we have had to deal with but now seems just collateral damage from the past. As long as things continue to progress positively forward to Samuel's complete restoration, this too will heal.
Samuel's dilation was put on for next Tuesday which is good since his gut is acting up off and on again. We figured after the anus closed down so much and for so long, that it would clamp down quickly after being opined. It has been just over a month since his last dilation so it is time to check. The GI is planning to scope his bowel at that time to see how things look. I sent her a copy of Samuel's labs today and she was not impressed with his Alkaline Phosphate at all. She said he possibly has a zinc deficiency based on the low value. I looked back at all our previous labs and they all are about the same. Here is the thing, it is not technically low. On our labs set of normal values, it is fine. But the GI said for a growing child, they should be in a higher range. Perhaps another reason he is not growing?? Or just add it to the pile. At any rate, this is info we would have never gotten with our Onc. Samuel gets lots of zinc in his diet so he must not be absorbing it properly. We will have to supplement it ironically at this point to be certain it is easily assimilated. Samuel needs another supplement like he needs another scar or surgery, but we will do what we have to at this point to get him healthy again. It will be interesting to see if it makes any difference.
He woke up today feeling great and has had very little amounts of steroids. I think his body has finally figured out it needs to make them again because we did not see nearly the amount of issues as over the past few days. Suddenly he looks downright rosy red and it looks as if his reds are coming back. Either that or the blood flow to his face has significantly improved. He rode his big wheel at the park a half mile non-stop. Boy was he tired when he got off it though! Perked right up again for swinging, the merry go round and a little game of family soccer. We have settled into a nice pattern again. I don't particularly like mornings so I tend to be lazy until about 10am. So we usually try to hit the park by 10:30, play an hour or do family P.E., come home, lunch, put the babies to bed, then the big kids do school until late afternoon. This seems to be working well. It has been so long since we actually had a schedule or could plan a day that it seems strange, but I like it. I love doing school with the big kids and they amaze me with their knowledge and occasionally amaze me with their stupidity too. The beauty of homeschooling is that we catch things early before they become bad habits or they fall behind. Homeschooling with the big kids is my main one on one time with them and sometimes turns into visiting hour about different things. It really balances my day and I cannot imagine going through all that we have without their presence at home all day. Praise God for some normalcy and good times. Praise Him for Samuel's vitality and restoration.
2/26/08 AM update
Well, I did finally hear from the GI who said she would not worry about the liver enlargement YET. It may just be that the 6MP levels are too high. That makes me wonder if the MTX is not responsible since we have used it a few times and then stopped. Steroids would have masked any blood enzymes being elevated and since we have stopped using it for the time being, the enzymes won't show anything. They are scheduling the ultrasound this morning so I should get a time soon. We are hoping they get Samuel on for a sedation slot for dilation next week as we suspect the gut issues we may be seeing are his anus closing again. Samuel is just SO happy today! He doesn't have a care in the world it seems.
2/25/08
Today's Labs
WBC 4.2k
ANC 3360
HCT 30.3
HGB 9.7
PLT 132k
LDH 326
Phosphate 2.5
All liver enzymes are normal and as expected, Samuel's marrow is recovering this week. It is nice to see all the cell lines going up and he even had his biggest gain in red cells. The differential does not show as many abnormal red cells today either. The LDH is up and Samuel's ANC is going up. What are they responding to? Bone marrow recovery can raise the LDH especially production of red cells. Any broken red cells give off lactic acid as well. Liver damage can elevate LDH. Cancer activity can elevate LDH but we still have no blasts and incredibly strong neuts. Everything is going in the right direction. I am thinking we are going to have to supplement phosphate if this keeps dropping. I am beginning to suspect that the taper off steroids is the culprit. Phosphate absorption is regulated in the thyroid and steroids can cause thyroid issues especially when they are tapered. We have tapered pretty slow and Samuel is STILL on them. He still seems to need them. Tapering is not easy after being on big doses for two months. We may have to increase the amount for a little while because we are starting to see his gut acting up here and there as well. I really don't want him dependent on steroids! Yuck!
I like how we see a nice trending in cell recovery everytime we have a bolus of breastmilk to supplement. I finished off my supply from Thursday yesterday and it is obvious that it benefits the marrow recovery. It will be interesting to see labs again in a few days as I am once again out of milk. RN Kelly did not find any indication on Samuel's chart about an enlarged liver. Our last visit there was Jan. 21. I haven't heard back from my GI either. I will have to "give her fits" about sending me an e-mail like that and not being available to answer questions after the fact. The Onc clinic is going to see us Wednesday to see if the liver is in fact enlarged and determine what, if anything, to do. I am really starting to suspect steroids based on the timing of everything starting in. Samuel's side effects from conventional meds never follow the norm. We need to get him off them, and that is not proving to be easy because his body has obviously adapted to not making any steroids.
Praise God for no blasts. Praise God for cell recovery. Praise God for Samuel's continued vitality. Praise God that whatever issue Samuel has going on is healed in the Name of Jesus.
2/24/08
Things continue to go well. Samuel has so much energy that we have to go to the park or the school every day just to poop him out...no pun intended. He adores that Big Wheel. I have got to get RN Susan's e-mail addy to send her a pic. We haven't seen her in a month but I know she will be so thrilled to hear how much he loves this. We ended up buying Anna a big wheel as an early birthday gift just so she can keep up with him. The trike wasn't cutting it. He ran around about an hour and a half this afternoon at the school. He is constantly trying to provoke anyone who will to chase him either on foot or on his big wheel. We are thinking we can do some walking on the paved trail and the babies can ride their big wheels. The thought occurred to me today that we haven't seen how much stamina Samuel has to just go for a walk. Last year he ended up in the stroller for most of our walks because he was just too tired. I think things would be different now. We take him to the store with us but while shopping I make him ride in the stroller just so he won't touch things and get germy. Mark noticed his limp today. I have seen it for a long time now. Even last year we noticed he walked funny. He has possibly walked funny for even longer. Whether it is neuropathy from chemo or just habit from a sore butt, he walks flat on one foot and on the other tip toe. This will be just another thing to deal with at some point because it is just habitual now. The shunt is on the back burner as well and as long as he doesn't grow, things with it are fine on hold. Of course, I would like him to grow so then there is that.
I haven't heard from the GI beyond her note Friday night. We are not overly concerned about her findings at the moment. Between the leukemia and the starvation, it isn't any wonder either of the organs are swollen. From my reading on previous cesium patients, it took several months for these organs to recede and a lot of the organs were into the pelvis or at the belly button. Samuel's spleen is already receding and that makes us wonder if whatever is going on is fixing itself. His bones protruding don't seem as obvious as they were a few weeks back either. I will call the clinic tomorrow to see if the Onc noticed Samuel's liver was enlarged in January. Steroids can actually mask liver damage and cause liver damage and I will be interested to see what his blood work shows on that front tomorrow. For all the complications we have just managed, I should not be shocked that we are still dealing with the fallout. This did not happen overnight and won't go away overnight either. It is just annoying because we are looking so forward to the day when Samuel's lungs are clear, his scar around his g-tube site is faded, his tummy and gut work well and he is rosy red making good red cells. That and no more cancer demons. One day at a time. We are determined to enjoy the baby steps. Praise God for Samuel's healing.
