12/28/07
Today's Labs
WBC 2.4k
ANC 360
HCT 23.3
PLT 78k
As expected, Samuel's WBC has again fell. We were hoping to see PLT a bit higher but this is only lab sheet #4 without blasts. One week without blasts thus far. Samuel continues to thrive, better by the day and we give God praise!
12/26/07
Today's Labs
WBC 3.7k
ANC 461
HCT 24.9
PLT 36k before transfusion!
LDH 159
Lab sheet #3 without blasts. Praise God! RN Kelly called me in Infusion to let me know about Samuel's PLT. He has only lost 11k since Sunday. So, that means he is making some for sure! So he received what we hope is his last PLT transfusion today. His ANC continues to climb slowly up and it was great to see his WBC up so much though again, we probably have steroids to thank for this burst and it will probably go down some over the next few days. Samuel might also need one more red cell transfusion if his red cells keep diving. We will check again on Friday. Our Onc thought that he will perhaps need one more red and two more PLT transfusions before he makes his own again. That was before we saw labs which look very promising. I told the Onc I wanted to cut back on Samuel's 6MP dosing to 50% a day now because I want to be certain that his WBC can recover and heal all his various problems. He was fine with that. Samuel's MTX dose is very low but I saw MTX poop today which we used to see with much higher doses so our Onc suggested we can check his blood levels if this problem continues. MTX used to strip the intestinal lining on Samuel previously and up until now, I haven't seen it. I am uncertain if he was even absorbing it up until the past two weeks so this is probably why. So we will see how that goes and if the problem continues, we will have the level checked and go even lower. Samuel will take another week off steroids now and then do another "burst." After that I have asked that a bone marrow with MRD be done. Our Onc was fine with that, as I knew he would be. He told me that a person can have up to 70% cancer in their marrow before evidence of it ever spills into the blood. Knowing how quickly an infection caused Samuel's relapse in September, we think it prudent to get a number now, check again in six months or so to see how we are doing. Especially in light of Samuel needing surgery again both for a new G-tube and oh let's not forget about that shunt. Samuel's last MRD, almost two years ago showed 1-2% abnormal cells which at that time could not be classified as leukemia, but obviously were. We would expect this number to be much higher now. Our Onc is also going to do the peripheral blood studies at the time the MRD is done and we will have Samuel's NG swapped under sedation as well. The NG's are only "good" a month and we have had this one now MUCH longer. Our Onc was pretty pleased with things today and amazed at Samuel's complete turnaround since his last visit.
Samuel continues to do great. Today he got up at his usual time, 6AM and was ready to play. That is the first time in months that he was ready to get up and do something. We had to wake him on Christmas. As his neuts start to climb, his cold is starting to break up and he is coughing up more and more mucus daily. I suppose the advantage of having a cold with NO ANC is that you don't get those miserable symptoms such as a runny nose, and mucus issues. His breathing sounds worse again, especially when he is sleeping. Sounds like he is trying to breathe through a straw. With him recovering neutrophils now, he will probably start to actually feel worse for awhile because he has a cold. Neut recovery is a great thing, but when there is some sickness or infection involved, it can also suck because as they get to the point of necessity, they tend to worsen the problem before they make it better. So while we cannot wait for the ANC to come up, slow will be better than a huge jump.
Continued praises to God for Samuel's complete restoration!
12/25/07
Merry Christmas to you and Happy Birthday to Jesus, our Lord! We give praise for a wonderful day. Samuel is doing awesome! I can honestly say that this Christmas was perhaps Samuel's best Christmas ever. I did not take tons of pics but chose to record our holiday festivities on video instead. Last year, Samuel could hardly sit down and was needing to soak his sore butt in the tub several times a day. His anoplasty was only a few weeks old and let's just say that the surgery was not considered a success until many months after. Samuel came home in worse shape than he left. He spent last Christmas hurting. Two years ago, I have video in which we look back now and see that even then, he could not sit down. His butt was closed down tight and we did not even know it until months later. So he was miserable then too. Three years ago finds Samuel neutropenic, as he is this year, but under the effects of high dose chemo and just barely walking again after the most horrible nightmare ever. No, he feels much better than any of those years even in spite of the last two months. He does not hurt, his butt works fine, he is happy and he can walk, sit, talk and play. He even danced for us this morning. If you ask the other kids, they will say this is the best Christmas ever too. We allowed them to open some presents early, a few days before Christmas so that we as a family could enjoy them together. As I say, life is not about what you get, it is about what you do. We have had some great family nights together. Seeing everyone play and enjoy things together is very special right now. We got our Christmas cookies made last night and are working on our special dinner tonight. Each child got exactly what they asked for for Christmas and many of the things they received were truly "family gifts" and I like those best.
Samuel's body continues to work better and better by the day. I gave his last dose of steroids today, finished the bottle. He is doing great, no problems on them at all. We will go in for PLT hopefully early tomorrow morning. I fully expect him to be low and yet Mark pulled his port tonight and it did not bleed. It usually bleeds when he is less than 30K so perhaps we are in for a surprise! I hope to visit with my Onc a bit as well assuming he is around. I haven't talked to him in about two weeks or more, I forget. At any rate, I am ready to cut back on one of the chemos and see how things go but will see how he weighs in. And as always, we pray tomorrow is the LAST transfusion. Bound to happen soon. I am really ready to get our lives back on track and that means life with a lot less hospital stuff. Obviously we plan to see labs again tomorrow as well and we wait to see paper confirmation of what we already know is happening. Samuel's restoration.
Samuel made me a very special present. I think the best gift I could have received next to the miracle of his life. What more can I say? I am VERY very blessed.
12/23/07
Today's Labs
WBC 1.2k
ANC 384 now 32% of the WBC
PLT 47k
HCT 27.?
LDH 175
Uric Acid 5.3
Lab sheet #2 with no blasts. Some of you might remember back to the days when I used to physically count "good days." I might start counting good labs for awhile. I figure we need to see a good million of them at this point. Good labs are any values which do not include blasts. Other than ANC which is all because of steroids, we do not see any signs of marrow recovery here. Looks like marrow sputtering, making a few cells here and there and then back to none again. I suppose the fact that he can have 32% neuts says his marrow is in much better shape than it was two weeks ago on steroids when he could only make 9%. Steroids or not, that is quite good! The WBC crashing again is also due to steroids. Steroids mean you get neuts, and lose lymphs. I will probably wean Samuel off them starting tomorrow or so. We would really like to see the WBC go up. We would really like him to start to get better as far as the cold goes and his wound as well. His poor little butt has been sore off and on still with yesterday being not a good day there. I figured his WBC must have been pretty low at that point. He has been better today with all poops looking and smelling like they should. Samuel's PLT are not low enough to transfuse tomorrow but we will see what the clinic says. Most likely we will wait until Wednesday and go get them first thing. It would be nice to have the next two days free of medical visits and visitors. We would like to make some Christmas cookies as a family tomorrow and attempt to enjoy the holiday a little bit before the season is done. The Christmas tree is up and half the time, we forget to turn on the lights. Christmas for us will be spent here quietly with no visitors. My Mom went to Mexico and we are not taking Samuel to Mark's parents home due to his low WBC. The big kids will go to Christmas dinner with Mark's parents. Perhaps by Easter he will be ready to participate in an extended family celebration. For now, there are just way too many germs floating around school kids.
Samuel is doing just great. Continuing to get better each day. He has been coloring, playing with play doh, dancing, climbing on Kaysha's make shift jungle jim in her room, chasing his Dad around trying to get his Dad to chase him, and just feeling good period. The RN who was here today asked me, "No pain?" And I tell you all, NO pain. He did tell me today that he could not jump yet because it would hurt his bones. He is still needing large doses of strontium to help with bone pain but it usually occurs right behind a cesium dose so if I give them together, we don't see it. Strontium should also help protect his bones from the steroids, that and we are using small steroid doses anyway. Samuel is sleeping through the night, only waking if he poops and last night he actually got himself to the toilet. He has been back in diapers at night for months now. So we hope to end the diapers soon. He also gets himself up on his own, not screaming for help and dying in pain first thing in the morning anymore. The kids noted that when they came home from a visit at Mark's parents, that Samuel was happy, not grouchy sick on the couch. It has been so long since he took care of himself that Mark and I still walk behind him to marvel at how far he has come in really a short amount of time. He stopped walking like a prego and while still slow, he is walking much better. Doesn't look drunk anymore. His weight continues to slowly climb. He has gained a pound and a half in the past seven days putting him at a whopping 37 pounds. Still awful! But he is eating on his own, small meals in which he has to chew VERY well of he gags because he is still not making tons of saliva yet. His stomach is getting more efficient daily though and emptying on it's own now without my help. I haven't had to draw food back out in days which is nice. He is a lot less maintenance. It is such a blessing to watch him get up and play with the kids and especially with Anna to whom he has certainly been the most cruel over the past months. She is a tough girl who thankfully forgets. She just wants to play with him and keeps asking when he will be better enough to go hiking again. That seems like a different life.
I have taken a bit of time this week to try to figure out what the heck happened to the house over the past several months. One of the RN's in Infusion asked how I do it all. I don't. And the farther you get into my house, the more you see it. We are going to need a month to do spring cleaning and try to reorganize the messes, the rooms, etc. The sad part is all I want to do is take a month off to just sit, relax, watch a show on TV that isn't a kids show, do nothing, sleep, meditate, go somewhere besides the hospital, do anything but work. Once again, it feels like we have come home from a war and are sifting through the aftermath Not knowing when the next battle will come is always the hardest part. My other kids are starved for our attention and grateful that their brother is coming back to them. Kaysha was watching home videos of life when Samuel was just a baby. What I noticed was how much Daniel has changed. He used to be such a happy go lucky boy and since Samuel's diagnosis in 2004, he has really been the one hit hardest by this. He is not the happy child I watched in the videos, that is for sure. He is not overly sad, or angry, just different. That makes me sad. They did not deserve this horrible ride, that is for sure. We pray that we will be able to have some good quality and quantity time with them this coming year doing something other than hospital crap. I am really looking forward to the days when all the hospital stuff is a once a month thing again. Weren't those the good old days?
And so for now we just continue to sift through what feels like the aftermath. After the past several months I can tell you again, that it is easier to keep someone in remission than to try to GET them back into remission. I have never worked harder in my life than I have the past few months. Keeping a child alive who is in remission and doing well is MUCH easier than the the nightmare of complication after complication with messed up blood. There is still so much to do, so many decisions to be made, but in light of the last few months, as long as Samuel is doing well, life will improve a lot. While Samuel is not technically in remission yet, things on paper look like he is heading in that direction. As our Onc said earlier this month, it will probably take Samuel's marrow a long time to recover after having cancer there for so long. We always hope and pray Samuel will continue to take his words and shred them. I have learned not to limit God's hand by agreeing with anyone who puts a time line on anything where Samuel is concerned. I know God can heal Samuel's body regardless of his WBC and I know God can turn our lives around in an instant regardless of what anyone believes. So, as always, I go to sleep waiting for the new day to change everything. How many times have we seen that happen? More than I can count. I told Samuel he had to take a nap today. He says,"Well, I am not tired." I say, "How do you expect to get better if you don't rest?" He says, "Well, I will just ask Jesus to make me better." Sounds like a plan! An awesome plan. How cool is it that I have a five year old whose FIRST thought is to ask Jesus? These are the life lessons he will take on into adulthood. I am sorry we had to reach the depths of hell for him to have to learn these things, but one day he will know what a miracle he is and have mountain moving faith which will allow him to do anything he wants to do. I cannot wait to watch all the things he will accomplish.
We wish you all a Merry Christmas and send you our love. Thanks to each and everyone for your neverending love, prayers and support. You keep us going in so many ways.
12/21/07
Today is Winter Solstice marking the shortest day of the year, and the beginning of the days getting longer again. It is the beginning of a new season. Today, December 21st marks the six month anniversary of Samuel's original relapse at which time he was given three months to live without "conventional" treatment which would have been a bone marrow transplant. I have been looking to this day for the past week or longer wondering if the 21st would again be the "magic" or "miracle" day. I had VERY high hopes, I can tell you that. Samuel was born on a 21st, received his first ever chemo on a 21st, relapsed on a 21st, went into clinical remission on a 21st back in August and here we are again, a 21st.
Today, is the FIRST day since September that we have received labs with once again, NO peripheral blasts. And once again, we see good signs of marrow starting to recover. Today is another day for praise to God. We are happy to finally get here but that in no way means Samuel is cancer free. There are still days, months, years of work to be done to keep things this way. This has been a huge hurdle to get over and while we are happy to get these numbers today, the battle is far from over.
Today's Labs
WBC 1.3k
ANC 208
HCT 29.7 up!
PLT 70k
LDH 245
Uric Acid 6.6
Samuel IS making reds again! Yeah! I thought he looked better this morning, more pink. He has been floating on his cesium rushes which is great to see. Each day he just feels better and better. He feels better than me, now that is saying something! Not even going to comment on those PLT other than to say we have enough to make it through the weekend easily. They will draw labs again on Sunday so if he needs them, it will probably be Monday. But of course, we pray we NEVER need them again. We pray for perfect labs for the rest of his long life.
We started steroids two days back. I gave one dose the first day, two doses yesterday and will give three today and continue until the bottle is gone or Samuel gets to angry on them. Whichever comes first. It is absolutely wonderful to have full discretion here on which treatments to start, stop, etc. Once again, I think the steroids helped his body's ability to cope because he improved immensely on them. And of course, we wanted to kick those last blasts OUT. Our Onc's original thought was to have Samuel stay on them for a few days after we stopped seeing peripheral blasts. We stopped them last week because we needed to get rid of everything that might be affecting his gut.
His appetite is coming back in leaps and bounds and his tummy is working better with each day that passes. His special formula FINALLY arrived today so we will start that tonight. It is made to heal the gut specifically the small intestine so I have high expectations for it. He has gained a pound since last weekend but has a LONG way to go. I keep trying to figure out how I can take some of Daniel's fat and put it on Samuel. If only.
So, today is a great day and we Praise God for once again getting us here. Samuel will not be considered "In Remission" until we see all cell lines recover and go into the normal range. At that time, there will still be residual disease in the marrow. And obviously, since we did not nuke it with chemo, there is probably more residual disease than what would be expected after a chemo induction. So our treatment plan does not change. What is much better about today than August 21st is that the cellulitis is dead and that is what caused his relapse in September. So keeping him free of infection is still critical even after his counts recover. His immune system will NOT be normal for a long time. Nutrition will always be the main treatment for Samuel and this will be critical for the rest of his life. Everything we add to that in the form of supplements, treatments, drugs, will depend on the condition of his gut. We pray for God's continued wisdom as we walk down the road which has literally NOT been traveled by anyone but us.
Praise God for getting us here with some sanity left at least. Samuel's heart is strong, his spirit is stronger, and while his body has been through hell and looks like it too, he is amazingly happy and cannot wait for Christmas. What a very special time it will be for us. God continues to give us our heart's desire and our one wish and our one prayer for Christmas. Samuel restored. Samuel's miracle. There is no greater gift for me than knowing that our son will LIVE his life according to the Word of God, abundantly. There is no greater gift than knowing that many hearts will turn to God knowing He is a God of miracles when they learn about Samuel's life. We do not store up our treasures on earth, we store them in heaven. I know exactly where my treasures are. They are watching my family grow up being close siblings, seeing my children unite in prayer to save ONE who is dying and watching that prayer be answered, openly acknowledging that God can fix all of this, and Samuel asking me to pray for him because he knows only God can and will heal him. I cannot think of better gifts to give my children than the knowledge of the power of faith in God. I cannot say that every day faith was easy, but it sure is worth it. It is easier for me to have faith that he will live than it is to think about planning his funeral. I will stick to faith. We thank each and everyone of you who continue to stand with us in prayer for Samuel's miracle. We know that the devil comes to steal and destroy and if there is one thing I know for certain, he wants Samuel dead. With God for us, who can come against us? We stand against death, we claim Samuel's miracle and life and declare Samuel healed in Jesus Name, Amen.
12/19/07
Today's Labs
WBC 1.9k
ANC 76
Blasts 1%
HCT 28.3
PLT 19k before transfusion
LDH 149
Uric Acid 5.3
Nothing like taking forever here. We got the preliminary CBC before leaving the clinic today and whoever we see the WBC go up, we just wonder what is coming. So Samuel has 19 bad cells per 1ml of blood. The lowest we have seen since the summer. It doesn't seem realistic to think they are living anymore given how much he is improving by the day. If the LDH is a good marker, then things are certainly on the right track still. Boy, it will be grand when he starts making his own cells again. Doesn't appear he is making any reds at all now. PLT did not take a huge hit from Monday to now though so that is encouraging.
Samuel was happy all day today. His transfusion went great and RN Susan brought him a Big Wheel for Christmas. He is all excited about this. Just what he doesn't need right now, exercise to burn fat. He has none. February here is always a nice month and we hope to enjoy it. He can ride at the park then. Samuel slept on the way to the hospital and on the way home as well but actually walked out when it was time to leave instead of riding in his stroller. He hasn't walked anywhere in ages it seems. His appetite is coming back slowly. Today he actually felt hungry twice in two hours time and I have been able to get full food amounts into him several times a day now. Things seem to be coming along well and every poop looks and smells right so all the hard work going into getting his food digested properly is paying off. We hope to see him start packing on the weight here soon because he literally looks emaciated. It is horrible.
Mark and I are still trying to kick our colds. He is doing better than I currently but I have had a small setback called AF which always increases the duration of illness. I just don't know why a person cannot bypass AF in times of crises. Samuel of course still has his cold with with no neuts apparently it just lingers but doesn't make him feel horrible with symptoms like runny noses, sore throats, etc.
We will see labs again on Friday and most likely start another steroid pulse at that time to be certain those blasts get the hint. We appreciate your continued prayers for remission and cell recovery. Continued praises for good days.
12/18/07
Samuel has had two solid days now pain free! He is feeling better and better each day. Playing more, walking more, coloring and playing on the computer more. It is a joy to see his body come back to life after this past month or more of listlessness. It also seems like his body is starting to wake up and remember what it does when it eats. I made his favorite apple muffins today with lots of extra digestive spices and he has eaten 2.5 with no ill effects. Tonight I was able to get a full feed into him plus he ate with his mouth and is just feeling great. Each night he is sleeping better as well.
The kids are getting excited for Christmas but for Mark and I, it is still all about remission. This holiday season has been all about saving Samuel. Perhaps we will do as we did last year and have a holiday spirit month in January after everything calms down. I am excited for the kids and they picked out some great gifts and we added a few surprises to their lists too. The ultimate gift for Mark and I will be to see some undeniable evidence of remission. What we see in front of us today is a fragile bodied strong spirited child who continues to live and get stronger by the day in spite of the odds. He just needs to gain about eight or more pounds and you would never know the horror we have been living the past six months. We hope the new year will bring us the opportunity to rest, relax, enjoy something and rebuild the life that we have just seen shattered over and over again. I will continue to hold on to the promise of Restoration from God.
Tomorrow, platelets. We pray it is the last transfusion. We will also see labs again and would like to see those pesky blasts gone. And it would be nice to see that WBC start climbing again. Samuel's body still has lots of things that need healing and he has been waiting a LONG time for them to heal. Continued praises for some good days and nights free of pain, misery and suffering.
12/17/07
Today's Labs
WBC 1.5k
ANC 225
Blasts 2%
Monos 2%
HGB 11.4
HCT 31.5
PLT 37k
LDH 187
Uric Acid 4.9
Labs which make you go hmm. So what is with that 2% blasts? It is like they are just hanging out for the ride. Apparently they did not get the message they are supposed to be gone? Uric acid was 7.1 on Saturday so it has come down a lot. A sign of less cell death which is good. His marrow is still being purged of blasts but at least we are seeing it make some good neuts now. Samuel has 15% neutrophils today. That is up from 4% Saturday. I would say that is some good recovery. Not sure what is up with the HCT and PLT. Almost makes me wonder if someone messed on on these Saturday because of the huge drop. I guess we will never know. Someone got me all excited over it though! So, now Wednesday we will go get PLT again and hope that THAT is the last time. Samuel's chemistries continue to look amazing with everything normal now except phosphate which is now low. Low phosphate is a sign of an alkaline diet so in the grand scheme of things, this is not a big deal. We will certainly know something is up if it shoots up again.
And MOST interesting of all? Yesterday's culture is negative for growth so far. Saturday's grew something weird which was NOT strep. I really think this may be a dietary problem with food fermenting as I wrote out yesterday. Whatever is happening, he has enough good stuff in his veins to manage it. RN Kelly asked me if he was on any abx right now. No. But with the cesium silver, garlic and host of herbs on board, looks like he is getting great coverage apparently since we have had now at least three known bacteria grow and then not grow again. So, Praise God for that. We will dodge that bullet for the time being.
Samuel has had a great day today with no pain...yet. Seems like we do great til the eve when things escalate, poor digestion becomes even poorer. So my goal for tonight is that we don't have any episodes. I am really watching how his tummy is working, drawing out of it through the tube about an hour an a half after a meal to see how it is going in there, adding more enzymes as needed to get it moving through. He has a LOT of weight to gain back but his gut is SLOW. 5 ounces took three hours to leave his tummy this morning. Terrible! Please pray for his gut to decide it can work again. That would help in the weight gaining process. He was 36.8 pounds this afternoon. That is just awful. But he is feeling better, stronger, happier each day and that is great to see. It was a long process getting to this state, and I know it is not going to fix itself overnight. I am always up for a challenge.
Praise God for GOOD NEWS, neutrophils and restoration. We continue to claim it as ours. I continue to go to bed each night believing that recovery is just a night away. We have seen it happen so many times. Samuel continues to be a miracle and God continues to protect him and keep us going in the right direction. For that, we give Praise to Him forever.
12/16/07
Today's transfusion was uneventful. Just the way we like them. I asked for a hard copy of Samuel's labs from yesterday and adjusted the values recorded from yesterday. Looks like it was edited after I got the call. His HCT was almost 24 and the blood from today should have put him at least 35ish based on how great he now looks and feels. It really felt like the last time. His chem panel looks GREAT! Very impressive. Obvious that even though Samuel's weight hasn't come back, the nutrients are certainly being absorbed.
Half way through the blood the RN comes into say she has bad news. Samuel's culture from yesterday is growing gram positive again and the MD on call ordered two abx, one of which was Vancomycin. The other is not the same one we had just stopped. And we were staying the night for them. Uh, no. I told her that we were not staying, never doing Vanco and already had abx at home. The MD ended up calling me about it and after a little discussion about Samuel's gut and the lack of fever, etc. we chose to do nothing and wait on the strain to declare itself and decide about treatment tomorrow.
At any rate, this is not good news in the grand scheme of things. Samuel's gut is doing much better, meaning, I found the right amount of enzymes to add to his food and system to get the nutrients absorbed, digested and pooped out correctly. I am really not interested in screwing it up because as things stand today, his body is still not doing much on it's own. He pretty much needs to be fed like a baby. A few ounces every two hours does not seem to tax him. Any more than that and the food just becomes stagnant in his tummy leading to the horrible pain. Then I pretty much have to draw all the food out of his stomach through the tube and start fresh. If food is not digested properly, it ferments instead and that is what produces the pain episodes as it emits gases which pass into the blood and eventually go into the muscle and CNS. That makes me wonder if the bacteria he is carrying in his blood is not from this cycle somehow. If that is the case, it would not seem like we will rid the bacteria until we stop the crises from happening. Basically, when his body starts working again.
I am sure tomorrow will be full of phone calls and advice on this. If the culture grows something else than strep, I will certainly think the digestion process may be to blame. The original culture grew something odd which they thought was a fluke but it could have been right and his body just eliminated it before the new one was done. I guess we will soon find out. So, labs tomorrow. Hoping to see more concrete evidence of marrow recovery in those PLT. Of course WBC's would also be lovely. Samuel is doing much better and for that we are thankful to God indeed.
12/15/07
Today's Labs
WBC 1.9k
ANC 76
Blasts 2%
Monos 4%
HCT 23.9
PLT 89k
LDH 189
Continued praises for labs. Regardless of the blasts seen here, it appears that Samuel is making not only red cells but also platelets! We have never seen PLT at 89k two days after a transfusion ever. He only received one bag of PLT and was very low when he got them. This is an excellent sign of marrow recovery already in progress. Our Onc says blasts can pop up here and there for a little while after the bulk is cleaned out so these are not even concerning when signs of marrow recovery are there. Red cells coming back is miraculous considering the condition of Samuel's digestive system right now. Wow! They drew a type and cross today and we do plan to get blood tomorrow and give him a good bump. That should let his marrow solely concentrate on PLT and good WBC's. He should also feel MUCH better after. And it really looks as if this will be the last transfusion, especially if he is making PLT again. ANC recovery typically occurs five days after PLT recovery so we are hopeful that we should see this start increasing by mid week.
Samuel coughed up some rather nasty crap yesterday and cleared out his lungs. That was grand! His cold still lingers, of course. Mark and I are still battling it as well. Feeling good one day, horrible the next.
We are still working incredibly hard on Samuel's diet. Getting his food digested before it goes into him seems to be working the best. He wants to eat with his mouth but whenever he does, he gets the sick feeling, the headache and the leg pains. Today, however, we got out first smelly poop and I cannot even tell you how happy I was to get that! That is a great sign that at least what is going in is being absorbed well. Whether or not his gut has anything to do with it, I don't know yet because it is hard to tell if it is working at all other than just absorbing at this point. He appears to be making no pancreatic enzymes or HCL at the moment. But he is feeling better each day. The clinic gave me an elemental formula to try but after reading the label, I chose not to use it. I remembered my ND had an elemental formula I used years ago and looked it up again. It says it does the same thing this crap I have here does, only it actually uses healthy ingredients, not sugar, canola oil and soy. I am trying to get the rancid stuff out of Samuel. Why would I put more toxins in?
At any rate, things are improving here, some faster than expected and some at a turtle like pace. But we will take it. Samuel's pain episodes are becoming less often and easier and easier to stop. He is sleeping 6 or more hours straight at night which I am just loving though I still wake up and listen for him. We are all breathing a little easier though there is plenty more work to be done to get Samuel healthy again. He will get there. That, we know. Praise God for his hand always upon us.
12/13/07
Today's Labs...we are almost there! We can taste it!
WBC 2.3k
ANC 46
Blasts 2%
Monos 6%
HCT 22.7
PLT 14k transfused today
LDH 152
For as frustrating as Tuesday's labs looked, these are just a joy. Samuel's leukemia looks dead at this point. Or at least knocked down enough that the good WBC is already recovering and the LDH is down where we saw it when he went into remission. We are just thrilled to say the least. Praise God for His continued guidance and wisdom. I called my mom last night to say, "I found it. I know what the problem is." I called her tonight to give her the news that we have paper proof to support what we have known all along. Life and death is in the gut. Mark and I now believe that from the time when Samuel's cellulitis flared up in September until now, his body has not been properly assimilating the nutrients and alternative meds. The muscular pain started then and the only time it went away was when we solely concentrated on diet. And during that time, his blasts almost were gone. Right up until his stoma got inflamed and irritated and we had to abandon all the things that were helping him get better. Mark and I have wondered for months now why cesium has not had the same effect it did initially. He used to get a cesium "rush" and he felt great. Lately, we have not seen that. In the last three days, however, it is back and he is more energetic and happy. Going over possibly the BEST part of this lab panel is that his WBC is coming up. That already indicates marrow recovery. He has a lot of healing to do and it looks like his WBC is going to come back and help us out there. Our Onc looked at his wound today and was amazed to speechless about how well it has healed considering the lack of counts. One of our usual RN's said, "that is a miracle!" His butt is also looking better. Everyone was impressed by how much better he was overall than the last time we were there where he just layed in the bed and cried most of the day. Not today. he was playing, coloring, jabbering and watching TV.
I told my Onc that we no longer need IV fluids. I found the problem. I discussed my findings with him and it basically went right over his head. I told him we need to be done with abx. He was a little reluctant, but agreed. So we will draw another culture this weekend to be certain it is negative. If Samuel was symptomatic of strep in his blood he should have high fevers and low blood pressure. He has a temp of 97F and high blood pressure. Pretty much the day we started abx he lost the two pounds he had gained last week and his poop quality deteriorated so I know that is to blame. I asked the Onc about steroids and GI issue and he thought they should increase stomach acid. We have not seen that benefit. We have the opposite problem again. There is none. Samuel is going to taper off steroids over the next day or so. Our Onc looked at his mouth and he does not have mouth sores from chemo. He has two new six year molars coming in, he bit his cheek and his tongue. Poor buddy! So that is good news. A person with good platelets would not have had a mouth full of blood but since his were low, we got a good teaspoon or more. This is great news as mouth sores generally mean they line the entire GI tract. We do not need that. Our Onc offered his plan of staying on 6MP and MTX, doing steroid pulses one week on, one week off, and possibly adding low dose Vinorobine. This was all of course before labs came back with him assuming things were not looking better. So, there will be some changes made to this plan. Steroids have already drained Samuel's calcium to the point of being low. I am supplementing it big time and it makes no difference. They also ruin bones of growing children. So even at the dosing we are on now, we might consider a 5-7 day pulse once a month, but probably no more than that. It all depends on his gut. We will probably continue the MTX as it is dosed now since it is so small but will most likely cut back on the 6MP in another week or so simply because these poisons still are a detriment to Samuel's gut and his immune system. Time will tell how this will play out but in the grand scheme of things, we want high doses of the non-toxic healthy stuff and low doses of the crappy stuff.
On to Samuel's gut. Many have asked what we learned. Even the RN's today wanted to know because the change is huge already. Awhile back I was looking at Michael Moore's herbal materia medica for herbs to help with acidosis. I ran across herbs for "digestive headache." Hmm. I started researching it a little further and came up with a LOT of info on malnutrition and just what causes a digestive headache. Basically, signs of severe malnutrition or improper assimilation of nutrients are anemia, anorexia, fatigue, weight loss, headaches, muscular cramping and spasms, diarrhea, constipation, undigested foods, need I go on? The digestive headache and muscular cramps typically happen about an hour or so after eating when food toxins normally eliminated by the GI tract are reabsorbed. Toxins reabsorbed and malnutrition eventually lead to degenerative disease, such as cancers and ultimately death. We have already begun to reverse this cycle when we added the ATP. But unfortunately with Samuel's fragile gut, adding the meds we have added and then abx is just lethal to his gut and did not help us whatsoever. In Chinese medicine, which I really love and use in most every way, he has a spleen-pancreas deficiency. Obviously. His cancer was in his spleen and his pancreas stopped making digestive enzymes. Both issues of cancer. As a side note, our Onc only palpated his spleen just under his ribs today. A week ago, it was almost to his belly button. You should not be able to feel your spleen at all unless there is a problem with it.
I had made him some pureed soup the other day with several herbs in it and this actually seemed to stop the muscle cramps and headaches. I wasn't sure the herbs in it did not stimulate blasts though. So I made it yesterday without the herbs. He woke up hurting and I fed him the soup. Did not help. So I went back to the herbs I left out. Rosemary and cinnamon. Both work for spleen pancreas weakness as well as digestive issues and headaches. So I made him a quick tea of these. Poof. Problem vanishes. We have been dealing with this since September. Never getting ahead. Now we found the herbs that stop it in it's tracks and help rebuild his digestive tract. Other useful herbs I added today include fennel, cloves, peppermint and angelica. All stimulate the "digestive fire" he is lacking. So we are still having small crises, but not like we were and the tea stops it in minutes. Treatment of this problem is slow and steady. Not adding anything to disturb the delicate balance in his body is key. Getting rid of as many things that hurt his gut is a must. Something I watched on TIV with the kids gave me a great idea too. Animals which cannot chew their food puke up gastric acid on their prey to digest them, then they slurp them up. So I started just putting the stomach acid directly into his bag of food and that seems to be working well too. He does not get uncomfortable while being fed like he was previously. I actually found an herb indicated for muscular cramps associated with recovery from severe malnutrition. You can bet I will be ordering that one because while we see a significant improvement, we have a way to go. This is why it is so impressive that Samuel's good WBC is recovering because it can help speed up the process. So in a nutshell, even though Samuel is fed the best quality foods, his body is so worn down from most likely abx and other conventional meds and of course cancer, that his gut has been shutting down for months. We have a lot of work to do but certainly remission will make that easier. And it is interesting and annoying to note that the original month of chemo which did so much damage to Samuel's gut that it cost him his colon is still haunting us now. Probably caused his relapse because of his absorption issues with the anus closing down. Will always need special care to keep him well and cancer free in the future. It is a sick cycle but one I plan to break. We have certainly dealt with worse things in the grand scheme of things.
With that said, Samuel needs blood again. I am sure this anemia is also digestive. Hopefully we can correct this soon but for now, we know new blood will just give him a great lift. We hope to do this Saturday. And as always, I hope it is the last time. We hope to see blasts gone this weekend and more cell recovery. We cannot wait for Samuel to kick his cold, clear his lungs and get back to his old self. I cannot wait until the running feet I hear here are his. I cannot wait to see marrow recovery on paper and NEVER need transfusions again. We are thinking that the timing might be good for a Christmas marrow recovery. That would be the ultimate give we are all praying for. Another miracle.
Praise God for his continued wisdom and showing us where to look to find it.
12/12/07
Things are better! Just look at Samuel's smiling face above. Look how much better he looks in the pic from today compared to the one taken just two days back. He has had minimal issues with pain today. In short, we have had a major breakthrough. I finally know for certain what has caused this muscular pain and headaches and found a quick, easy, nutritive and painless way to stop it within minutes. It is all digestive. All of it. Probably always has been. None of this is from cancer, I am sure of that now. Possibly some of it has been compounded by tumor lysing but the majority is digestive. Once again, life and death is in Samuel's gut. He has had no pain meds today. Doesn't need them. He has spent the day coloring, painting on the computer and even asked to go outside to swing. He hasn't asked about outside in months. He was quite unimpressed when I said no. Our yard is a mudhole and his equilibrium is off. No way. I have to help him up the stairs. Not that he cannot walk, he just walks like a drunk. He took a three hour uninterrupted untormented nap today. Call that a world record. We are looking forward to a blissful sleep as well. Tomorrow should be an easy day at the clinic in comparison to what he had had to do in the last month. We are going to try to find out of we can stop the abx tomorrow since they are still messing with his GI tract. The only bad spot in the day was tonight when we noticed his mouth bleeding. Everywhere. He has mouth sores in a few spots and also looks like he is getting a new tooth and bit his tongue. He claims it doesn't hurt. After the pain he has had, I am sure it is nothing in comparison. However, next to choking, a kid with a mouth full of blood also stops me in my tracks. We have an afternoon appt for platelets but I may see if we can get it moved up JIC. We have no idea what to expect for labs tomorrow but I will say that his wound continues to heal regardless of his WBC. Each day it is a little smaller. And his butt also looks better and is not bothering him as much. The quality of his poop is still nicely formed and today he only went about 4 times during the day. That is a HUGE success. But, it still does not stink so that still needs to change. When we smell it, we will know that he is getting all his nutrients. He lost some of the weight he gained as soon as we started abx. We cannot wait to get rid of that poison. Keeping this short tonight, just wanted to LYK that Samuel HAS turned the corner and he is NOT miserable anymore. Now we just pray that his labs will line up with with what we are seeing in front of us. Praise God for His continued wisdom!!!!
12/11/07
Labs Today
WBC 1400
ANC 126
Blasts 25%
HCT 25.1
PLT 43k
LDH 216
CO2 20 still low
Uric Acid 6.2 now normal
Phosphate 4.1 now low
Here are some rhetorical questions and thoughts. Note that there seems no right answer and even our Onc won't weigh in apparently. The chem panel looks a LOT better. The LDH is lower than we have seen in quite some time. His uric acid is down which supposedly means less cell death. This is supposedly a sign that there is less turnover of leukemia. And yet, the blasts are up again. So is the overall good WBC. So is the ANC though we know we have steroids to thank for that. But if his marrow is so "sick" should he be able to make neutrophils? Another interesting note, the PLT only dropped 11k a day instead of the usual 15k. So we can actually wait til Thursday to go in and get PLT instead of going tomorrow as I anticipated we would. Samuel's HCT is a reflection of dietary loss IMO from antibiotic issues in his GI. So, in a nutshell, frustrating numbers. The Onc had no thoughts on the whole process either. It would be extremely useful if someone would create an instrument which could detect which blasts are dead and which are alive. Our Onc wishes the same thing. At any rate, these labs are quite a disappointment. I am trying not to be down about these but it is hard when we were all really hoping the blasts would be gone. The LDH tells me that while there is a "normal" activity level of cells in his body right now, there is still cancer being made. When he went into remission in August, this was down to 120. So we really need to see it going down still.
Samuel has had his best day yet today. He colored 17 pages in his coloring book and spent quite a bit of time playing paint on the computer. That is a real improvement. He played Mario Party with Daniel and also was up and around quite a bit. The quality of his poop has firmed up a lot but it has no odor which while you might think that is great, it isn't. He is not getting the proper nutrients still with things this way. I am certain it is the abx causing the change and the strep bacteria was isolated to one usually found in the gut. I guess this is good news in reference to his port. He have used it almost 24/7 for six months now and it has never been infected. That is pretty awesome. The cultures drawn on the 9th remain negative and we will continue on abx until Friday, yuck! I just wonder if they are not contributing to the change in labs.
We will go for platelets on Thursday and labs again then as well. I am happy to be home tomorrow as I was really planning on being at the clinic and I just hate clinic days because it is so difficult to take Samuel places with things so up in the air. But thankfully today was a much better day than we have had and while things on paper look retarded, we have not lost sight of Jesus. We praise Him for a good day and many more to come.
12/10/07
Well the news of the day is that they finally isolated the bacteria and it is a strep variety. They are still not certain which yet and should hopefully have that narrowed down by the day's end. I called to ask that they switch the abx to a more targeted abx as soon as they know. Broad spectrum abx are the worst on the gut. A more targeted abx will be better and as I told the Onc this morning, Samuel's gut health and nutrition will ALWAYS be my first priority. Anything that messes with that will not last long. The culture drawn yesterday is still not growing at this point but it looks as if the course will be 7 days minimum on abx regardless. My hope is that the infection is somehow sinus related and the abx will help him clear that out. Nothing has changed thus far. Now Mark and I both have the virus as well so we have a new misery to add to the complexity of life right now. At least we know where we got it from and don't have to worry about giving it back to him. I suppose that is looking at the bright side. There are a variety of herbs I could use for strep but of course, they all stimulate the immune system so my hands are tied there for the time being. Mark and I will just treat ourselves with them for now and hope to get better fast. The sad thing is that we will be better long before Samuel.
Samuel's sleep was tormented a bit but he got up feeling better, able to walk and is coloring and playing games with Daniel. It seems funny to see him walk on his own and he walks like a pregnant lady. His balance is way off. We still have to carry him a lot when the muscular pains flare up. Last night was pretty awful and they seem to come with pounding headaches which does NOT thrill Mark or I at all since this can be a symptom of CNS involvement. We have not explored this other than to talk to the Onc about it occasionally but if the headaches don't go away when the rest of the symptoms do, we will have to do a spinal or get his shunt tapped to check there next. Many of his treatments do cross the blood brain barrier so we have always felt like we were treating this area well enough for the time being. Hopefully we don't have to go there.
Our Onc was quite pleased with the progress this morning and we both hope the blasts will be gone tomorrow in the peripheral blood. It will still be several days beyond that to see the marrow completely purged and get relief of the awful symptoms but his hope was less than a week at this point. I pray so. The benefit of steroids on appetite has started to set in and Samuel wants to eat again. A little here and there but it is a good start. We have a long way to go to recovery given all the complications and duration of them. Praise God for a light at the end of the tunnel. We thank you for your continued support, love and prayers!
12/9/07
Today's Labs
WBC 900
ANC 72
Blasts 10%
Monos 2%
HCT 26.6 holding beautifully!
PLT 65k so much for two bags....
LDH 219
Uric Acid 9.1
CO2 19
Praises for such a QUICK response! Samuel has had a fairly good morning but crashed suddenly this afternoon feeling absolutely awful! After seeing the chems, I know why. They will draw labs again on Tuesday and we HOPE and PRAY that the blasts are gone for good on that day. Samuel has had one dose of abx and already we are seeing gut issues. So annoying! They drew another culture today and we pray it is negative and we can stop abx asap. We thank you for your continued prayers for Samuel's complete restoration. We are still waiting and believing for our next miracle. The darkest hour is always before the dawn and let me tell you, the last weeks have been especially dark. Praise God for Samuel's body which still clings to life, and in every second he lives, hope abounds for his miracle.
12/8/07
Yesterdays Labs
WBC 1.9k
ANC 0
Blasts 38%
Monos 4%
HCT 26.7
PLT 26k
LDH 333
Uric Acid 8.6
Phosphate 6.2
CO2 21
Our Onc's interpretation of the CBC is that Samuel's overall WBC is still low so he is uncertain what the blast surge means. Probably not much. However, the uric acid continuing to surge up and down means that Samuel is definitely still making lots of blasts and killing lots of blasts. When we see this start to go down and stay down, that will be an indication of what the marrow is doing. That makes complete sense to me. The best thing about this lab panel is that he only lost 9k PLT in a day so not even close to as much as anticipated. He received two units of PLT yesterday in anticipation of a big loss which was great! Maybe he can hang on to some of them a bit longer. We were in clinic just about all day again.
Yesterday was another hard day for Samuel. Our Onc feels the pain he is experiencing is cancer. It is not tumor lysing symptoms but the pain of cancer. I don't completely agree on the muscular pain aspect of the pain but do agree on the bone pain. It came back yesterday with a vengeance. Our Onc wrote for Samuel to get Torradol for pain and we got about two hours relief from it. It is six hour dosing. Useful huh?
Another piece of possibly NOT good news is that Samuel's blood culture grew gram negative rods. Just one funny thing. It took three days for them to grow. So our Onc thinks it is possibly contaminated and another was drawn yesterday. Samuel has had no fevers since Tuesday and had enough time off Ibuprofen that we would know this for certain. Yesterday, I accidentally spilled so much DMSO on him that I told our Onc that I would be shocked if anything grows but a garlic bulb. Samuel smelled like spaghetti all day. Usually DMSO just makes you smell like garlic or oysters and it is not something the person themselves notice. Just everyone else. I guess I wasn't shocked to see the blast surge just because of the DMSO spill. It does stimulate the immune system. It might be that his blast receptors now receive stimulus from DMSO similarly to the way they received stimulus from G-CSF this last time around and if that is the case, we just need to discontinue use of it to see if just stopping that will get him into remission. There are many pros and cons to this however. But for now, I am stopping it too just to see if we see a sharp decline in blasts.
Our Onc and we went over the list of things we can add to nudge Samuel into remission. The first thing he mentioned was steroids. We immediately vetoed that one. We were thinking of the way they like to overdose kids on them and the implications that steroids caused Samuel's hydrocephalus, and gut demise, etc. But the Onc persisted stating that just trying them for five days might push Samuel to remission. Even a few days might help. So that did not seem as horrible and we knew that this might also help Samuel's lungs to clear as well as help his body deal with the stress right now. So I told him absolutely NO decadron ever. We would consider prednisone as it is the least toxic of the steroid family. He dosed Samuel at half the normal dosage and we started this last night. He immediately improved. The pain went from being constant to coming in waves. His stamina was better. He slept 5.5 hours straight last night with the help of benedryl and neurontin. He woke up still hurting but after being fed and given his numerous supplements and few meds, he is currently walking by himself, coloring and even being nice to Anna. His voice sounds less congested as well. So we are currently VERY pleased with this decision. We are protecting his stomach by using slippery elm, wild yam, fenugreek and chamomile sludge which also will help his lungs and overall digestion. This combination healed his gut lining earlier this year and has again stopped the "butt oozing" he experiences with iburpofen. Slippery Elm is a great nutritive herb for malnutrition as well. So his stomach so far is not bothering him and this morning he made just beautiful poop. The best poop we have seen in weeks. So the choice seems right now to be a great one and we are happy with the dosing not being extreme. Steroids will help kill the blasts and may even give him a neutrophil surge which he could really use right now so we hope to see that on tomorrow's labs. We also chose to up his 6MP dose to a full dose daily since it is not causing GI issues either to see if that will push this over the edge. We are not doing anything with the MTX at the moment because Samuel's lungs are compromised and Samuel always got the MTX cough. We explored Vinorobine again and our Onc suggested 1/3 of the dose for Monday if we still see no improvement. We suggested 1/4 dosage instead. So we will put that in our back pocket for now and hope that the improvement we see in Samuel's physical body will also reflect in his labs tomorrow. The key here is moderation and NOT packing a bunch of crap on while he is so compromised. We also don't want to add any poison that becomes active at the 14th day because we hope in 14 days we will be seeing marrow recovery. Our Onc feels that Samuel's marrow will probably recover VERY slowly once we don't see blasts in the peripheral blood because of the amount of time he has had them. The sooner we can get this into remission the better off his body will be.
Well, crap, the Onc just called and said the culture is growing gram positive rods now. Possibly a line infection. Low grade because he no longer is symptomatic but we will have to treat since he has no WBC or neuts. So back to VI abx once a day until this clears. This is just NOT a good thing. Hopefully we have enough other treatments on board to have this not affect the blasts in a negative way. Cesium and Abx do not mix well. Frustrating!!!!!!!!! If we don't treat, we risk sepsis or losing the line. Lesser of the two evils I guess. Our Onc was very happy to hear Samuel is feeling so much better. I can actually breathe today. It is such a nice change.
We will see labs tomorrow and they will draw cultures and he will stay on abx until they come back clean. We pray for improvement to continue. Praise God for a little break in the storm today. Makes the bad news above a little easier to take in I guess. Things are always easier when he feels better.
Just wanted to say a big thanks to everyone who participated in last month's fundraiser for our family. We appreciate your love, support and generosity more than you know. Special thanks to Christy and Audra for doing this. Also thanks to those who donate directly to us. We could not do this without your support. You are all a part of Samuel's treatment and restoration. May God bless you all.
12/6/07
Labs Today
WBC 1.6k
ANC 0
Blasts 31%
HCT 28
PLT 35
LDH 233
CO2 19
Uric Acid 7.0
Phosphate 6.0
Another horrid day to add to our pile. Samuel has had muscular pain pretty much all day. While none of the chemistries are horribly whacked, I think the toll of having them whacked for so long is playing a part in his inability to cope. His body is tired and with the prolonged low counts, and tumor lysing now also prolonged, the days are just awful. As you see his WBC is crashing. Our Onc has come to understand that the blasts tend to bounce around percentage wise so he was not concerned about the jump in percent. I am done with the Ech tincture JIC though. We are going to move to 24 hour IV hydration now to try to ease the symptoms Samuel has to deal with and see if that helps. Mark and I think it will help a lot at this point because we just barely catch up on it over night and then spend the day watching Samuel grow more and more miserable and hurting. We will go in for PLT tomorrow. It is obvious that he is sick because he is back to using up the PLT like crazy. The cold does not seem to be worse, just the same miserable thing. We are at a critical time if you have somehow missed it in the last several updates. The rush is on to get Samuel into remission before some infection comes along. We do not want to continue with these low counts for weeks yet because the law of averages says something will creep up on us. Our Onc is still amazed that Samuel has been so healthy this long. And he said today, he wants to "add something." He is going back through his book of poisons to see which is the least toxic to the gut at this point to nudge his marrow into remission. We will see what he comes up with but I don't know if we will add anything else or not. Samuel's body is so weak and weary that anything that would really devastate it more is not something I want to do. But at the same token, we cannot keep going on like this either. I am going to spell this out really plainly for those who cannot read between the lines here. Samuel is either going to achieve remission or he is going to die trying. That is where we are at. Did I say things are critical? I meant it. We thank you for your continued prayers for Samuel's complete healing. We need God 's protection and wisdom more than ever right now.
12/5/07
2nd Update
Samuel perked up quite a bit today, praise God! He still had his moments of pain but we have found use #554 for Apple Cider Vinegar. Neutralizing Uric Acid. And it seems to be working especially well in conjunction with his tea infusions. He has actually gotten up to play with his Dad for a few minutes here and there. He has also managed to gag up, and spit out some lung gunk so that does not seem to be worsening. I have not gotten a call from the clinic so will assume the culture remains negative or they haven't bothered to check it. He does not act like he has an infection. Just tired in an need of some good WBC's. Last night's sleep was pretty tormented for him and his nap was as well. I hope tonight's sleep will be better and he won't hurt all night. I did not get much rest last night and am again running on empty. He got on the scale today and weighed 39.2 so that is a huge improvement. ATP boasts an average weight gain of 2.2lbs a week and I would say we have surpassed that already. Praying tomorrow is an even better day with continued good reports.
1st Update
Labs Yesterday
WBC 2.0k
ANC 80
Blasts 19%
Monos 1%
HCT 21.1
PLT 16k
LDH 265
CO2 24
Uric Acid 7.3 high norm 8.0
Mag 2.1 high norm 2.2
Phosphate 4.3
These look promising with the big drop in blasts. Not only that but Samuel had 4% neutrophils. That amazed the entire clinic because we all expected to see 0's there. His chem panel looked MUCH better after just a night of fluids and teas to bring these high values down. Unfortunately, we did not get that uric acid down much and while he had a pretty decent morning yesterday, the afternoon was pretty awful at the clinic. The muscular pain continues and so do the headaches. They seem to come together so we think they are related to the chemistries. Yesterday was still marginally better than the day before so with each day we see slow but certain improvement.
Samuel's liver functions remain beautiful and so do his kidneys. His lungs, however, have become junky from all the laying around he has been doing. So not only has the cold progressed up his sinuses, but now there is some fluid in his lungs. His good WBC yesterday was 1.6k so that is not of any help at this time. Samuel is so weakened by his condition at the moment that he does not even have the strength to do a good productive cough. Mark and I have started doing the light beat on his back to help to try to loosen this gunk up so he can get it out but ultimately, he needs to feel good enough to get up and move around and cough. Right now, his little movements and us beating on his back have helped a bit but since he cannot cough, it just comes up and he gags on it. There is not much that scares me more than a kid gagging. But at least it is coming up and not just festering there. His lungs sounded better to me last night but worse today again. Our hope is that he will feel good enough to get up and get some ornaments on the tree. We hope to do this today.
Samuel also started having fevers yesterday again. I checked him in the night and found him at 100.2F so asked for a blood culture yesterday just to be certain we don't have something else brewing. The fever acts like tumor lysing to me and we have certainly seen it come and go. But knowing he has these other issues makes us want to be certain what we are dealing with. I did not see any fevers yesterday but they are probably well masked by ibuprofen at the moment.
Samuel is so weak that he walks like an old man. He looks like a frail old man because he is so thin. He was 37.8 on my scale yesterday which is an improvement over the 35 we saw just a few days back. Thankfully, it looks like we have reversed the cycle of starvation. The ATP is supposed to neutralize the lactic acid by converting it back to glucose for the body to use for energy and it seems to be doing the job since Samuel's latest LDH's are decent considering the amount of cell lysing going on. They should be MUCH higher. Cesium blocks the cancer from taking in glucose which is it's main nutrient and both together seem to have really put a stop to the vicious cycle we have been in. The labs look very promising that remission is near but we just need to keep him from getting any sicker because he has nothing to fight illness. His wound has literally stopped healing, just sitting there doing nothing. Not a bad thing because the hold is closed but in the grand scheme of things this is just another place for infection to brew if it wants to. His butt continues to look and feel raw but the quality of his poop has improved so we have at least stopped the continued damage to that area. It appears that Samuel's WBC is going to bottom out again to achieve remission and that is always scary. We pray it comes quickly and are really pushing the treatments to wipe this cancer out because he is not going to get healthy again until he is in remission. It sucks because with the cell lysing comes the muscular pain and headaches but the hope is that this will slow down because really there are very few cancer cells left and it is simply a matter of shutting down the source once and for all. We are hoping that those neuts we saw yesterday are a sign of marrow recovery already so hope to see more on Thursday. And while I know better, I started Samuel back on my echinacea goldenseal myrrh tincture because at this point his WBC's need to be aided by some antibiotic and immune aid to keep him from getting any sicker before this is all said and done. So far it does not seem to be stimulating blasts and is possibly stimulating good neuts so I am pleased with that decision. But Thursday will tell us more.
We are literally living in the depths of hell but we can see heaven's gate looming and we know God will get us there. Please continue to pray for God to carry Samuel and all of us through this very difficult time. All we want for Christmas is for Samuel to get better. May God grant our prayers early. Thank you for your continued prayers and kind notes of support.
12/3/07
Labs Today
WBC 2.8k
ANC 0
Blasts 27%
Monos 1%
HCT 22.5
HGB 8.2
PLT 31k
LDH 298
CO2 16 low norm 21
Uric Acid 8.3 high norm 8.0
Mag 2.4 high norm 2.2
Phosphate 6.2 high norm 5.6
Short story. More tumor lysing. Going in for blood and platelets tomorrow. Today has been a better day for Samuel than yesterday but that is not saying much. Yesterday was only marginally better than Saturday. We did get the tree out of the box but no decor is on it. I refuse to decorate it until Samuel can join in. Daniel says all he wants for Christmas is for Samuel to get better. Things remain difficult and we absolutely need to get him into remission before his cold gets worse. At this point, that is not going to improve with his WBC being so low. Please continue to pray for our strength, Samuel's strength especially because his body has had it. He needs it so much right now to cope with all his body has to deal with. The kids and I had a major prayer session in which we all agreed and layed hands on Samuel's body, again, and claimed his healing. We told his body it cannot die, it is to live out the number of it's days. I told Samuel that if he wants to live, he will have to literally get up off the couch and make an effort to be human. This is becoming a huge battle. Pray for tomorrow to go smoothly for us. It will be a difficult day if he is not feeling better. We believe God is able to change this at any moment and we continue to watch and wait.
12/1/07
Things continue to be difficult though there is some slight improvement. Yesterday had some good moments early on but the remainder of the day was pretty awful for Samuel. I am thankful it is the weekend as Mark and I can "tag team" him and get other things done. We seem to have found the solution to the bone pain. After talking to the cesium support person, I doubled his Strontium as recommended and that seems to have ended that pain. Great! Except that that was our easiest thing to manage. But we are thankful it seems to be gone for the time being.
The ATP arrived yesterday and after taking to it's customer service, I was told it could be anywhere from 45 minutes to 3 days to see improvement. Not too much to report from last night but today overall has been better from an energy standpoint. He is also starting to want to eat again and these are two things ATP will help with. The digestion still is an issue, improving here and then getting worse again. We figure this will take some time, certainly a few days to a week or more at this point. He is obviously getting more nutrients in now based on his energy though so that is good. The muscular pain continues to plague him and it is really a problem. We hope this will subside soon as we now think some of this is certainly dietary with malabsorption of some nutrients and hyperabsorption of others. The ATP should help with this as well. We pray tomorrow shows more improvement in these symptoms. Samuel's cold also continues to plague him. The other kids have gotten over their colds and been done for days. Mark and I thankfully never got it. But Samuel's cold seems to have pushed more up into his sinuses and today he has had headaches to go along with all the rest of the issues we are dealing with. So we pray that some of the WBC's going to his wound will start working on his cold as his wound is improving a little each day. In short, things are rough here. We are sleeping decently at night but the days are so difficult for Samuel that we are just exhausted by the day's end. We continue to pray for relief and an improved WBC to help with the cold and wound at this point. Samuel says he doesn't feel like he will ever get better. That is the hardest part to deal with right now; his mental state. Please Lord hear us and answer our prayers for mercy tonight.
11/29/07
Labs Today
WBC 3.9k
ANC 39
Blasts 28%
Monos 2%
HCT 28.3
HGB 10.3
PLT 20k
LDH 287
Phosphate 7.0 High norm 5.6
CO2 23
Samuel retained his good WBC of 2.8k and dropped only blasts. We will take that. While these look better than the last, Samuel had a miserable day yesterday. Miserable. Topping that off, we received some really bad news. Samuel will lose his SSI now that Mark makes $200 more a month than qualifies us to receive benefits. Samuel may lose his medicaid as well which would be really bad. So we are waiting on that decision with baited breath. While we do now have a primary insurance, we will max that out quickly and there are many things they do not cover. Just to give you an example of medical costs, it is about 5k a day to be inpatient. This is just the hospital fee, not doctors, meds, etc. Being on IV hydration costs about $1500 a week. Transfusions are $600 and up. Each time we see our Onc, his fee is $153.00 plus a separate clinic fee. Antibiotics IV were in the 5k's each when we did those at home. So, one could hyperventilate just adding up the fortune of costs we incur each week. So, hopefully, losing SSI will not automatically make us lose medicaid because they pick up the tab on anything not covered by the primary. The primary is already balking on some of the costs as I am sure you might imagine. It is a big group plan so they cannot disqualify you based on your medical history or say a condition is pre-existing and just not cover it. They have to cover everything in the contract. Neither insurance cover any part of our alternative protocols so we already foot the bills on that. That in the grand scheme of costs is cheap when you look at the conventional medical costs. So, we are just waiting to see how this will work. Samuel did receive a monthly SSI payment which we will also now lose and if that is not devastating enough when you are just barely keeping your head above water, but there has been an "overpayment" so now we owe them money back. I got this lovely news yesterday which was a hard enough day taking care of Samuel but that was like getting kicked when you are down. All I can tell you is that it is obvious that the devil just wants Samuel dead and the rest of us miserable. If he cannot do that, then he will take every resource we have apparently. There are frankly days that are frightening.
Samuel has had a better day today and I spent some time talking to the support person for the cesium protocol about our situation. Samuel is wasting away at this point. This is the biggest killer of cancer patients in the end stages. Starvation in spite of how much you eat. The cancer steals all the nutrients and just basks in the lactic acid and no matter how much a person eats, they still lose weight. Today on my scale, Samuel weighs 37 pounds. He was this low when the cellulitis was at it's worst and that was due to infection. Anna weighs 41 pounds for reference, she is two years younger. The amount of diarrhea Samuel has had is just not helping. His energy, or lack there of is also another sign that he is losing everything going in. Another end stage sign is the lack of digestive enzymes produced by the body trying to minimize all it's actions to survive. So we will double and triple up here on these to help things along. I think some of his whacked out electrolytes are from this same issue of absorbing some things well and others not at all Thankfully, there are things we can do to stop this now that we recognize this as a major problem which could take his life quicker than the cancer at this point. I have actually thought this was becoming a problem for awhile, but in the last two weeks, the problem is very apparent. We have got to get him feeling better and keeping those precious nutrients we spend so much money on, in his body. I added stomach acid back yesterday. We have had to eliminate it due to the issues with the tube and also the hole closing up. I just read an interesting article on HCL that says it helps neutralize lactic acid which in effect stops the fermentation of cancer. And now we see his LDH drop over a hundred points. Also, now 24 hours after adding it back to our regimen, his diarrhea has stopped and he is now pooping beautiful poop again. I am just thankful the wound has closed so well so we can use this again. So, we are encouraged by this major turn. He felt much better today compared to yesterday but that is not saying much. We will be adding ATP to our regimen to help with energy and appetite in the hopes that it will stop the wasting process. We hope that both will help to significantly reduce the blasts and pain, both muscle and bone. This has not improved yet but based on the change in the poop we have seen in the last 6 hours, I think tomorrow should be a lot better overall.
Our Onc was able to witness the magic of DMSO today. He was doing his exam when Samuel started screaming about bone pain and was amazed at the relief it brought in minutes. He also was able to look at Samuel's wound today. Usually I just e-mail pictures to him because Samuel has such a fit about it. But he showed him no problem today because it doesn't hurt anymore. Our Onc shared with me that he is astonished that Samuel has not had any blood infections all this time. I reminded him that cellulitis was far worse in my book. He also told me he thought Samuel would be in the grave by now based on the events of the last two months. So he is pretty pleased overall with how things are going now.
I think we are on the right track to getting Samuel feeling better and gaining some weight back. Also, this should help in getting his butt to heal by stopping the horrible diarrhea. And in the grand scheme of things, that should help us to stop chasing our tail in the cancer treatment aspect. As I told our Onc today, we are still missing something and I think I have found it or at least another piece of the puzzle. We will not see labs again until Monday and I hope to have a nice weekend NOT doing medical crap. We hope to see Samuel start to look and act more alive again. That will certainly help me cope with the other issues going on around here and I also hope to get some household and business things done as well. A day to pretend we are normal with no screaming, no pain and no crappy labs to wait on sounds great!
11/28/07
Since the last update, I have had several notes from kind people wishing to send gifts for my children for Christmas. Please know that we appreciate your graciousness. But, I want you to know where my heart is right now. Someone sent me a note saying that they have never written because then they would have to admit that all the bad things I write are true. I am assuming she means childhood cancer, suffering, families torn apart, etc. This is a reality for a lot of families right now. My heart is heavy for all the families whose children are struggling to survive and while a lot of them have websites for updates, many more do not but still need help. In the first year of dealing with Samuel's cancer and complications, we could not have made it without the help of our Internet friends. Many of whom never got a personal thanks, just a simple thanks in a update. My request to you is that you go to a local children's hospital and ask a social worker or child life specialist if there is a family who may need some help for the holidays. They will know of a single mom, or a family who is just struggling to make ends meet. Donate a gift card, just hand it to a social worker, they will KNOW how needs it most. I can promise you that. As a parent who has been stuck in hospitals a lot, a gift card to Walmart so Mark can go buy Samuel a new DVD to watch is a wonderful thing. Being able to go buy him new underwear because he pooped in all the clean ones and is wearing diapers as a result is a beautiful thing. You never know what someone might need. Bring a new toy unwrapped, Social Workers will know who needs it. Some of the nicest gifts we receive are blankets, especially hand made ones. I have ALL of these. Many need to be restitched in area because we still use them every day. Whenever Samuel has received a new toy at the hospital, it just makes his day since there is nothing to do there most of the time. Ask a social worker or child life specialist who you can send balloons to. Samuel loves receiving balloons. Volunteer to sit with a child, play with a child. It will really open your eyes if you feel blinded to the reality we face. Maybe you already know a family dealing with cancer near you. Maybe you think they have it together because a year has passed since the child's diagnosis. Or perhaps longer. Send them a special care package. Ask a relative what their needs are since they are more apt to tell you than the people themselves. That will make their day, I promise you that!
Please know that my children will NOT go without this year. They know they will receive a special gift from us and they have two sets of grandparents to bring them toys. Everyday RN Kathy comes to visit, it is like Christmas here anyway and it does not even cover up the reality of our days right now.
Our needs remain primal. Food, gas, clothes, things for Samuel. My main focus is getting him healed. What things do I need to add, restock, etc to keep him going. If you wish to donate to his medical fund, you can donate to the fundraiser linked above this post or directly to our Paypal account so that we might continue to purchase all the things he needs to live. Not to mention pay for gas and food as we travel to and from the hospital and eat on the road. My children do have clothing and shoe needs which I will list when time allows for those who have asked. Help there would be great because it is not like I can just take them shopping right now. I guess we would just prefer that if you send something, it be a "need" item right now because that frees up my cash for bills, etc. Thank you SO MUCH for wanting to help and thank you to everyone who has helped already and to those who continue to do so even after 3.5 years. Know we appreciate you so much!
I received a note from a friend I have never met who has followed Samuel's story since the beginning. I don't think I have ever been so touched by a note and an action, at least not in a long time. This is where my heart is.
I wanted to tell you that last night my family and I went to visit at a Veterans Nursing Home. It was a church service that my uncle preaches at. The room was packed with people who have suffered in our honor, one woman had no legs or fingers on her left hand. Another woman was obviously brain injured in her actions, and only 27. A few men could no longer breathe without trach's. Another man had no leg and burns over other parts of his visible body. Many couldn't walk, it was terrible to see so many people not much older than myself suffering for a world that doesn't really appreciate it.
Anyhow, it came time to pray, they asked for prayers requests and a few were lifted up, and then I placed Samuel on the list, Saying he was five and battling cancer for his life. The sound of horror that ran across the room was silencing. As the silence continued and they seemed to want me to go on, I told a bit about your story. What I could remember off the top of my head. That he was diagnosed 3.5 years ago, that a series of hellish events stole from him the majority of his intestinal track, that he had an ileostomy for a long period of time, and many brain surgeries. That they did a take down surgery which should have improved things but he continued to suffer with monthly surgeries to keep his anus from healing over. That things finally improved last spring, that for the first time in three years you all were able to act more human only to be shot down with a relapse and a stomach infection you wouldn't believe. One that is still unhealed months later. That he's in unbelievable pain on top of it all. That he gets the majority of his food through a tube that was in his belly, but now since the infection ran down his nose. I told them that the doctors don't expect him to make it, and it's day to day, and that you've been burdened with the responsibility and knowledge to save your son, that your carrying strong and have carried him through many valleys, but that I couldn't imagine, just going through surgery with Alex, a minor one that had us over night anyway. I just couldn't imagine knowing that he'd die if I didn't do something, and that period lasting longer than a child choking on something, that period of time lasting for years.
I was trying not to cry myself. I love you all, I've faithfully read all your entries and prayed over every need, as I know many many have, but as I finally raised my head from the piece of paper in front of me I'd been curling as I explained what I remembered as best as I could, I was shocked to find, 90% of the room, men and women, warriors, soldiers for this mighty country were crying. Even some, like April, who acted odd like she wasn't all there had tears in her eyes.
Then those who could stood, and those who couldn't remained seated, and they/we prayed, one man started but soon i heard every voice simultaneously praying what was on their heart, some calling him Samuel, come calling him a little boy, a few with great sincerity called him "baby", with everyone praying out loud, many many voices lifted in sorrow and devastation for one tiny boy who needs relief. This isn't the first time I've asked prayer for Samuel. I went to a conference with 6000 people in Cleveland Ohio in June and asked for prayer for him there (Oddly enough the conference was June 22nd returned to the motel room that night decided to get online and share my blessing on my blog, to open my email and find that Samuel had relapsed, I'd felt it on my heart to pray for him, and I did it more as a praise, for removing such evil from your lives and restoring his body, I was really angry at God and broken to come online and find it anything but true). I've been to many a church service and asked for prayer for him there. But last night, was the first night that I'd asked people who I knew, knew what it tasted like to live like he has lived. Perhaps no where near the degree, but they've known suffering, terrible wounds, loss of body parts, loss of hope and quality of life, living what looks to be months for some, years or lifetimes for others, in a crowded home of other people just as less fortunate as they are. Their prayers seemed so much more sincere, speaking from the perspective of pain, perspective of loss, not people living high on their make believe victorious life, praying with pity for one little boy. People truly being drowned in their own swells that resemble yours, people in the valley themselves, praying with hope.
It was a beautiful moment, I only wish you'd have been there, to feel the brotherhood in that room as they enfolded your little boy in a club no one wishes to belong too. I'm praying too, and keep passing the word on, but tonight when you go to bed, somewhere in a VA Nursing Home, people who have lived the hard life are going to be on their knees, on their feet, on their backs, lifting your son up, and I have to think, God hears them especially.
Christmas is a time for miracles and I intend to get another for Samuel. That is my prayer. That is the prayer of my children, for Mark as well. Sure there are a lot of things we "want" but none of it matters if he is not with us. Nothing will cover that pain. We ask that you pray for Samuel's healing, ask others to pray, and spread the word. This suffering needs to end. As the holidays approach, look around you, I know you will find someone you can touch in real life who needs your love and kindness. For now, we just covet your every prayer. No amount of money or gifts cover the pain in this household right now. I don't know about you but knowing that people who have their own nightmare lives to live are praying for Samuel, weeping for Samuel, touches me so much. I think Sara is right. God hears them especially sacrificing their prayers which should be for themselves, for my baby they have never met. This is the kind of person I want to be. Life is not so much about what you get, or what you have, it is about what you have done and are about to do.
Last night Samuel was able to sleep on his tummy for the first time in months. I should have taken a picture. he also asked to get into the tub with me again and is finally finding taking baths soothing again rather than a torment. Two blessings in 24 hours time. His bone and muscular pain continue however and we really need this to end in remission. But for now, I will take the little things. Amen! Much love.
11/27/07
Labs Today
WBC 4.1k
ANC 82
Blasts 31%
HCT 30
HGB 10.7
PLT 45k
LDH 390
Phosphate 7.7 High norm 5.6
CO2 25
Look at that stupid phosphate again! No wonder the muscle pain continues! Things on paper are certainly going the right way though we thought that over the weekend even when the blasts looked higher. It is always nice to see it on paper going right regardless. Samuel's HCT and HGB are holding beautifully, we are so impressed! His PLT are about what I would expect so we will go in and get those Thursday at this point. We are impressed that Samuel has 2% neutrophils in this count as well. The baking soda treatment continues. I let my Onc know that I will be upping the 6MP to daily instead of every other day at this point because we really want to get Samuel into remission as quickly as we can. I am not seeing ANY side effects from this chemo anywhere so that makes me happy knowing it is doing ONLY what it is supposed to be doing at this point. Thank you DMSO and MSM. We were at the hospital Saturday for PLT and the RN taking care of Samuel watched me rub DMSO into his aching bones and saw him get immediate relief and asked, "What IS that?" ha, works better than morphine!
Our system for managing the side effects seems to be going better but I would sure like to NOT have to do it forever and that is how things are feeling right now. We are seeing some great things on paper but it would be nice to escalate the process of cell death which would then minimize the number of days Samuel has to yet be miserable dealing with various stages of tumor lysis syndrome. Yesterday was not as good as Sunday, but today has been better than Sunday. He has sat up and colored all day and special thanks to RN Kathy for the cool things she brought for him to color. He is sure busy and it is nice to see him sitting up coloring rather than laying on the couch being miserable. His naps are still slightly tormented but his nights sleeping with Mark and I are peaceful. He was even up once last night to rub MY back instead of the other way around. He felt great all night right up until he woke up and then had another episode of muscular and bone pain. If he could only understand that his comfort revolves around pooping out the dead cancer, then this would be much easier on him. But when he is hurting, he does not want to move so we just carry him to the toilet and as soon as he goes, he improves. This is more difficult at naptime and early in the morning because the pain just seems to immobilize him and all he can then do is scream bloody murder. His coping mechanisms for this are wearing thin. We do think he is having SO many issues with ridding his body of the dead cells because of his anatomy, or lack of. Most people pee off dead cancer but in Samuel's case, he poops it out instead and as soon as it hits what little large intestine he has left, the toxins start to be reabsorbed and make him hurt. As soon as he gets them out, he improves immediately. And if that does not work as well as we hope, then baking soda is a magical rescue.
Someone asked if last Thursday was just a Thursday for us, or if it felt like a holiday. As Mark told all his co-workers who asked about our Thanksgiving, it sucked. Yes we had turkey dinner and it was delicious but when Samuel is miserable, we are ALL miserable. And he was miserable on that day. We feel cheated by the four day weekend in which we did all medical things and had no time to have fun. I have asked this before, what is fun anyway? We cannot go anywhere, do anything, and Samuel has a limited amount of time he actually feels good in a day. Leaving is actually pretty difficult and I pack a huge backpack for a half day's trip. His needs are many. It is miserable here for the most part. I was thankful Samuel is still alive and with us but extremely irritated that his quality of life is awful. This is not the life I wanted for him. I watch my three other kids run and play and think he should be doing that too. But he can't. Either he is too tired or he hurts. He has no stamina and very little patience for anything that is not his way. He has been like this most of the time since the cellulitis started. Almost five months now of being miserable. He has a cold which is holding steady, a wound which is slowly healing, and a bone marrow that needs to be beat for disobeying the Word of God. I plan to beat it. He deserves to have quality of life. That is all we have ever wanted for him. It is so irritating to not have these things NOW. It is irritating to know the Christmas holiday is less than a month away and not know if it will just suck as Thanksgiving did. Will he be in remission then? Will we still be doing this? Here is a good one, will he still be alive then? It is a valid question. If he gets a serious infection, it could be all over. We have been blessed and incredibly lucky to have NOT had any issues with blood infections thus far. I actually don't put much thought into this I guess because we are doing so many things for him systemically to keep infection out of his blood. Infection seemed worse in the tissues as cellulitis. At any rate, dealing with a cold using herbs is basically holding it steady. He is not better, not worse. His WBC that is useful today is about 2.8k so not useful in the grand scheme of his problems. Thankfully, his lungs remain clear which I attribute to garlic and DMSO. But I am uncertain how far we will get to him getting over his cold until we get the blasts gone and the WBC improves. Seeing an ANC of anything is always a good thing because we figure whatever he is making is being readily used up trying to heal his many ailments.
So will we enjoy the holiday season? I hope so. Right now, I don't know. If things remain like they are, then it will be very hard to enjoy much or do much. My updates of late have not been very long because I am so exhausted. The days are long and the complications we have dealt with are many. The hardest part right now is that we are literally living in suspended animation and from adrenaline rush to adrenaline rush. Everything is on hold and nothing can be planned. I have no idea what life will be like next week. It is hard trying to look to the future because we don't know how much longer this period of awful will last. If I knew a date, then I think it would be easier. We hope to get a tree up this weekend but even that can change depending on Samuel. He is crazily listing all the things he wants for Christmas. Pretty much everything he sees on TV. We told the big kids they will only get one nice gift from us this year. Uh, they know Santa does not exist. The babies will probably receive a few smaller things but we are really limiting our budget here because we are trying to pay down an incredible debt we have taken on since Samuel's relapse. That, and we don't know what future expenses we will take on with the coming months. There have been many unexpected things this month including needing to replace the water heater among other things. I was able to get assistance with my power bill so the money saved there paid for the water heater at least. Things are difficult. Things suck right now. What more can I say? This cannot last forever. We have been through horrible times before and eventually they work themselves out. One way or the other. We know Samuel cannot go on like this forever. God won't allow it. There have been so many times in this journey where I have literally prayed God end it, one way or the other and again I am to that point. Samuel is NOT living the life God intended and as a result, none of us are. What I cannot stand most is the suffering. I don't know of ANY child who has suffered more than Samuel has and lived. I don't. They usually succumb to the disease or some complication of chemo. Samuel has had more surgeries to right wrongs than most adults have in their lifetimes and he is not done with surgeries either. He has had more horrible wounds than I have ever imagined he would have and the pain that he has to endure to live just shatters my soul to try to think about. Any adult in his situation would just try to die rather than try to survive. It is too much. I has been too much for a long time. As his mother who has watched this all play out, I take it real seriously to right all these wrongs against him. Will he thank me for saving his life if he has to live it like he has the past few months? I don't think so. We have had a total of about three months in which we can say life was bliss in the past three years. Samuel does not even remember it anymore. All he remembers is pain. There is a whole lot NOT right about that. I want to look back someday and say we had MANY good years. Not a few short months no one remembers.
Samuel's healing rights all parts of our lives. Samuel's healing brings back our joy, our life, our resources and keeps our family whole. That is what we want for Christmas. We want Samuel healed. Anything above and beyond that is gravy. We really don't need anything else at the moment but Samuel's healing. I want to see my boy's joy restored. I want to see his body restored. I want to see him spend days, months, years happy and without pain and without cancer. With God, all things are possible. We absolutely believe God will bring us yet another miracle. Today would be a great day for that. I keep waiting. I keep expecting.
11/25/07
Today's Labs
WBC 5.2k
ANC 0
Blasts 69%
Monos 1%
HCT 30.2
HGB 10.7
PLT 72k
LDH 324
Potassium 4.1 now normal
Magnesium 2.1 normal
Uric Acid 5.4 normal
CO2 25
Phosphate 7.2 high norm 5.6
While the blasts and the overall GOOD WBC here look horrible, the bigger picture is that Samuel has had his best day yet. He played all morning. Up and running around. He was able to walk and play until he woke up from his afternoon nap. This morning was no fun for him either upon rising but within 30 minutes of getting up both times, he felt much better. Last night's cancer treatments obviously hit his marrow hard based on the pain and cramping he had this morning. We think the blasts on this lab panel are dead but not eliminated at this point. The LDH virtually is unchanged and all the other counts look awesome. HCT is holding. PLT are higher than we have seen in months even just after a transfusion. I haven't seen anything higher than the 40's so 72k is a very good indication that these are holding better now too. The Onc has chosen not to have labs done tomorrow but wait until Tuesday at this point. That is fine with us. Seeing labs every day has always been disappointing in past experience and after doing hospital things for the past four days, having a day off will be nice.
Samuel's good WBC today is about 1.6 which is horrible, and yet, his wound is smaller and more healed than we have previously seen and his butt seems to be making it's own WBC's because it is still healing well too considering the amount of pooping he is still doing. With a count this low, he should feel awful and still he has felt better today than in the last two weeks. His cold still lingers but is not setting him back much in the activity area. The RN here today heard junk in his lungs but I listened this afternoon after he was up and running around and he was clear again. His BP done today was better at 110/64, actually low for him as he tends to run more like an adult. He was feeling good at the time obviously. So, we are hoping to see the labs trend in the right direction this week. It feels like we have been here before. The labs looked hideous with his good WBC terribly low and that was when we stopped everything and the blasts dropped off like flies. It seems like looking back, we really crippled the cancer at that point, and if we had just pressed on a little farther, it would have been a done deal. So we will press on. Cancer treatments are still reaching his hip bones in a major way today even though the LDH is not signaling huge cell death or huge numbers of blasts dividing. The pain in the bones tells us there is still more work to be done there. We pray for another good day tomorrow. Today was a blessing seeing Samuel feel so much better!
11/24/07
Today's Labs
WBC 4.9k
ANC 49
Blasts 39%
HCT 30.1
HGB 10.9
PLT 17k
LDH 311
Potassium 3.4 now low
Magnesium 2.0 now normal
Uric Acid 5.4 now normal
CO2 27
Phosphate 7.0 high norm 5.6
We did a great job of getting the electrolytes back into good balance and these labs look so much better than yesterday. Our Onc said that if the blast count was in the 30's, he would be ecstatic. Here you go. The reds held well and he did not lose as many platelets as expected again so things look good. His wound healed in a giant step last night again so whatever blasts are circulating are not stopping the healing in any way. Our Onc was pleased today and also impressed with Samuel's healing overall. The symptoms of tumor lysing continue but not as horrible as the last day or days. He was able to feel good for periods of time today and also had episodes of bone pain and muscular pain. He told Kaysha, "When my hip hurts, Mama puts DMSO on it and it gets better." What a smart boy. He reeks so bad of DMSO right now that he was gagging me in the hospital room while we were playing cards and doing puzzles. He also colored a few pictures as well which is a first in a week or more.
Our hope in seeing these labs is that the major cancer killing is now done and what is left over won't be so awful on Samuel's body. Our Onc thinks we still have a week of this see saw of symptoms and possibly another week after that, we could see marrow recovery: remission. He feels like we have a good plan of attack with potent cancer treatments. He also thought that as we saw the LDH go down, that would signify that there was not much cancer left to kill so seeing a huge drop in that today is a very good sign that there is not much remaining again.
I gave 3 tsp of baking soda yesterday and 1tsp before labs were drawn today and that seems to be keeping the CO2 up and that has become critical in keeping Samuel feeling human. But we figure it must take a dive when the symptoms show up and then recover as soon as it hits his GI tract. Baking Soda did not work as well a few months back when Samuel had IV abx on board however so I am very impressed with how well it works now. He has had another tsp or so this afternoon and done fine, and will get another before I go to bed with the hope that it makes the morning better. He woke up this morning miserable and unable to walk again. It really sucks because he doesn't realize it until his feet hit the floor and he collapses. We got smart and get a good hold on him before he does this if possible. His digestion seems to be recovering slowly from all the lysing and we are seeing better quality poop here and there.
He is so tired. I am so tired. We have spent the entire holiday weekend doing medical things. This has been no holiday. They will draw labs again tomorrow which will be great as Samuel got ALL of his cancer treatments tonight which included 6MP, MTX and wormwood which really seem to get to his hip bones fast. Thankfully, we have IV fluids for night detox and I hope that will help a bit for tomorrow. He slept about ten hours last night again. Just great! Praises for continued improvement and might I add that his kidneys are just doing awesome and his liver is working perfectly as well. Thank God we just did the liver cleanse because I am certain it has helped a lot given the last week's events. His BP today was something to behold at 140/120 but it was done during a major episode of bone and muscular pain and went back down to only slightly annoying at 135/93. I would worry but I know why it is high and know it will rectify when the lysing is done. Our Onc and we are on the same page at this point, hit it as hard and fast as we can, get it gone, and do it keeping Samuel as comfortable as we can at this point. We are tired of playing around and I don't want to go through this for weeks yet slowly plunking away at the source. It is not fair to Samuel at this point to continue to feel like this. Everytime he asks if he will EVER get better, I always say yes, but can never say when. Tomorrow would be grand. In Jesus Name, Amen!
11/23/07
Today's Labs.......Major Tumor Lysing going on here.
WBC 4.9k
ANC 0
Monos 4%
Blasts 42%
HCT 30.7
HGB 10.9
PLT 23k
LDH 829
Potassium 6.4 High norm 5.5
Magnesium 3.9 High Norm 2.2
Uric Acid 9.9 High Norm 8.0
CO2 28
Well things are exciting, life threatening and busy all at the same time. I can tell you that I have never seen a lab panel of chemistries this whacked out and all these values signify tumor lysing syndrome. Samuel dropped another 4k per ml of blasts overnight. Probably in a few hours based on the chems.
I got my prayers answered. Samuel got up off of the couch and has been feeling MUCH better today. He slept 12 hours straight last night. I woke up several times to be sure he wasn't dead. Unfortunately, he got up in severe pain. It escalated all day and our saline fluids were not covering it. I decided to give him a tsp of baking soda through his tube with some minerals, and a few other lovely ingredients. Within ten minutes, I watched my boy who has had to be carried all over the house get up and walk, play, eat and feel MUCH better. A few hours later, I had to give him another rescue and he again, felt much better in minutes. It was amazing to watch. And the labs today are even more amazing really because we KNOW for a fact that cancer is dying at a rapid rate similar to what you would expect in induction chemo.
So, while are a pleased, this is a life threatening problem if not managed properly. If we were anyone else, we would be inpatient right now. We have doubled up on the fluids at this point and will continue to manage this at home until tomorrow morning where Samuel will be admitted for labs, platelets and see where we are at that point. The interesting thing is that Samuel has had 2 tsp of baking soda and suddenly his CO2 hit 28. We were not able to get it that high even with IV bicarb because the amt. and rate was not fast enough. Part of the treatment plan from the MD in Rome is to run it fast and potent and the cells cannot survive it. So, we will be getting bicarb IV delivered tonight to use overnight but will be doing oral baking soda now 6 days on 6 days off for the four cycles as suggested by the MD in Rome and then take a few weeks off and repeat. Obviously, I think we found the correct dosage now to get the job done. The tumor lysing syndrome should taper off as the amount of cell debris is reduced and again, turned off at the faucet. Looks like they will draw labs every day now until this crisis is over. Funny how his numbers can look so bad and yet, he feels so much better as this crap dies off. Hydration is so key and we are thankful that we can use his tummy again to get fluids in and out. You can see the cycle of the toxins building up in his system and as soon as he poops or pees, he improves significantly symptom wise. As soon as he gets them out of his body, they STOP being reabsorbed into his system. He is making trips to the toilet every 10-15 minutes and I anticipate a long night ahead of us. But it is important that these toxins get OUT of his body quickly so we will do whatever we need to do. Thank God for nettles, such a wonderful diuretic and so soothing and building to the adrenals. Samuel really needs stamina right now.
As you might imagine, our Onc was stunned by the numbers tonight. And better yet, it also seems to be stopping Samuel's cold now too. He is feeling better tonight than he has in days. We still have a long way to go toward getting the energetic happy boy we love back but have made great progress tonight. Please pray that God protect his body from the effects of all the toxic waste in his body right now, for a good night tonight and remission ASAP. His good WBC is 2.8 today and we need that to go up to keep healing his wound, his poor butt and to eradicate this cold.
Praise God for wisdom and results!
11/22/07
Today has been marginally better than yesterday for Samuel. That is not saying much. We have suspected he was getting a cold over the last few days but hoped it was the new tube in his nose. However, all the other kids now have colds so we are not thrilled that we now are certain Samuel has a cold on top of all the other issues his body has to deal with. That will be just another set back at this point. One which we did not need.
Today's labs.
WBC 10.4k
ANC 0
Monos 6%
Blasts 65%
HCT 32.8
PLT 37k
CO2 19
LDH 376
Phosphate 7.1
These may be slightly diluted due to fluids being run before the labs were drawn. They will redraw tomorrow to confirm and Samuel will need platelets either tomorrow or Saturday. There are many signs of tumor lysing on these labs with the need for bicarb to be added to the fluids if the CO2 does not come up. We had RN Cindy here today who we see rarely but really enjoy visiting with. She looked at the wound today and thinks it is definitely closed up enough for the tube to move to the stomach. So we moved it up and Samuel did improve slightly with the numerous muscular pains of the electrolyte issues again. Hopefully feeding him in his tummy will improve these by tomorrow. We are impressed with the amount of Monos we are seeing. At this point, they are his main line of defense against cancer and any cold virus he may have. I am not shocked to see no ANC since we definitely suspect he is sick. His butt healed well overnight, perhaps the best healing attempt we have seen and we hope that his pooping will normalize tomorrow. But overall, he feels horrible. He did feel okay enough to get up and play about ten minutes tonight before going back to the couch. He went to bed early tonight. I cannot tell you how tired of this we are. He has been feeling poorly for about two weeks and it is very draining on me. Even with better sleep, it is hard to watch. While his labs are slightly improved over Monday's, I was hoping to see a better response given the amount of tumor lysing issues he has had. And it may well be shutting down the cancer at the marrow and we just are not seeing it manifest on paper. No one can say if the blasts are dead or alive and given that his body continues to heal under these circumstances, that is a positive sign. Samuel is now five months past his relapse date and his reserves are wearing thin. Please pray for us to know how to rejuvenate him and give him his life back. All that wisdom comes from God. We ask for His guidance and mercy on Samuel tonight. May he wake up restored. Amen.
11/21/07
I am thankful that tomorrow is Thanksgiving because that means Mark will be home for four days and this life will not be so difficult. Samuel continues to live miserably. The fluids are helping a bit but he really needs to be on a 24 hour drip it seems. We are planning to move the tube to the NG placement tomorrow and I think that will help a lot in the grand scheme of things. The wound has healed a lot and the layer of black skin peeled off tonight. It continues to flatten and shrink. Our GI thought that 72 hours after we saw the cork form, we would be safe to pull the tube up, and that will be tomorrow. So I look forward to that and pray that it has closed on the inside as it has on the outside. He has been able to eat his small usual foods by mouth this whole time with no issues so I think we will be okay. We did not get labs today because the clinic forgot to request them and I did not follow up. So, they will come tomorrow. We anticipate Samuel needing platelets Friday but because he has been so inactive, he may still be okay. The skin on his butt has broken down to the point of bloody blisters so based on that, we might need them sooner than I think. His color still looks great. It is hard to believe he feels so sick when his color looks so good. We hope to see continued improvement in the labs tomorrow. We are definitely seeing evidence of tumor lysing though the bone pain has not been so agonizing. Hopefully, this means that the treatments are turning the cancer off at the faucet rather than just in the blood stream at this point. Our Onc thought we might see improvement by next week in the "sick" feelings and I pray that is so because this has been a very rough week. We got a taste of the bone pain, etc. last week but it was just a preview of what this week has had in store. The first time Samuel went into remission, he had no pain from cancer so we hope that this difference is the treatments really getting down to the core. And I am still of the opinion that he does not have very much cancer left because there is no way he could make red cells if he did. Certainly when we started out in June, it did not matter what we did, he did NOT make reds. Even in remission, he made reds two days and then quit. So we are really seeing this as a positive right now even though things are just hell on earth for Samuel. He says he feels like he is going to die and I rebuke that in the Name of Jesus. So at the very least he is not anemic and his remaining cancer is not going to like the well oxygenated body he has currently.
We are having dinner here tomorrow night. My Mom is coming. We are sharing in the cooking though it is really low key. I mainly have been sitting at Samuel's couch side or bed side so we are not going all out. Mark's Mom had Kaysha over to make pies for us. But we are having a free range organic turkey so that should be a nice treat. And once again, another year will go by where Samuel does not sit up at the table with us. I just pray that tomorrow he will be able to at least get up off the couch and play a little.
He slept with us for the last two nights and last night actually slept from 9pm to 4:30am before waking in pain. That is probably the most sleep we have had in weeks. It was wonderful except the part where he woke up in agony. The day has followed suit for the most part. One thing hurts, then another. I am thankful that Samuel is here with us for Thanksgiving this year but I pray that his quality of life improve immediately. The past few Thanksgiving's have been decent for our family and we always seem to have a reprieve from whatever misery we are living out. I hope we get another magical day tomorrow for Samuel's sake. Please pray for symptom relief and joy to be restored to my boy. That is all I want for Thanksgiving Day. To see him at peace. I praise God for allowing Samuel's heart to keep beating on as we fight to give him back the life he deserves. A life full of peace, joy, hope and above all NO pain or cancer.
Happy Thanksgiving to all. May God bless your day.
11/19/07
Today's Labs
WBC 12.5k
ANC 125
Blasts 68%
Monos 2%
HCT 37.1
HGB 13.4
PLT 23k before transfusion
LDH 405
Phosphate 6.7
Samuel got his wish. He wished Jesus would make his blood and look here, his HCT again has gone up and he is making his own cells. PTL! I haven't seen a HCT this high all year. Everyone at clinic asked if he got another transfusion, LOL. Our Onc still cannot figure out how he can make his own reds. While the CBC blast count does not look as good as Saturday's, today's chemistries show some major tumor lysing going on especially with is uric acid shooting up suddenly. Between that, the horrendous bone pain, and the flu like symptoms, it is obvious that his body is now going to deal with the cancer. Our Onc said, "I guess you were right, he did need to get that tube out." I am not shocked to see the WBC up again simply because we are using DMSO and the first thing it does is stimulate the WBC. Samuel's good WBC is about 4.2 today so that is an improvement over Saturday. His wound has made great strides at healing in the last 24 hours. Samuel has felt absolutely miserable however. I have spent the last 48 hours sitting at his bedside trying to help him feel better but nothing seems to help. He has just been crying and crying most of the days and feeling sick all over. After talking to the Onc today about the weekend and the symptoms, we again have come home with IV fluids to help flush out the toxins. It seems obvious that they are just building up in his blood and with the way he is being fed right now, I cannot flush enough fluids through the gut to help his clear them out. It is obvious to us both that the various cancer treatments are going directly to the core, the marrow and the One thought the pain would last another week before improving. Best news yet, the chemo seems to ONLY be going to the marrow, not the other cell lines or his gut. As soon as fluids started tonight, his body began purging the "cancer poop" and with each dump, he felt better. He actually got up and played which he hasn't done in days again. Last night he was pretty miserable. Between pain, nightmares and pooping his pants on a very sore butt, we were up most of the night. Hopefully tonight will be better. Samuel cried for most of the day in clinic today because he doesn't understand why his Dad cannot be with him too. He obviously remembers us as a unit when times are bad and simply does not get why his Dad cannot be by his side right now 24/7. It is hard on everyone when the days are so awful for Samuel. Samuel will sleep with us tonight again so we hope that improves the sleep situation. We haven't moved the tube yet, maybe tomorrow. I will e-mail the Onc and my GI a pic and have them weigh in first. We will see labs again on Wednesday and pray for continued improvement in the cell lines we see coming back. On the differential today Samuel had bands, basos, monos, lymphs and of course blasts. But usually, we just get blasts and lymphs so seeing numbers in these other lines was encouraging. Seeing him full of color and making red cells is ALWAYS a victory. Jesus is making Samuel new blood. Praise God. Now grant us rest. We ask that you pray specifically for Samuel's healing. When Samuel's body is made whole again, all other parts of our lives will fall into place. God will continue to be glorified through Samuel. Amen.
11/17/07
Today's Labs
WBC 7.2k
ANC 72
Monos 1%
Blasts 58%
HCT 35.5
PLT 41k
LDH 404
Well, I wasn't expecting to see significant improvement in Samuel's labs in just one day after the tube removal but must say I am pretty pleased with these. What we like most is the HCT and we hope it will stay up. Samuel's wound bled quite a bit overnight so this was a nice surprise. The overall WBC is down which is always a good thing when blasts are involved and his good WBC is about 3.1 today which is fine because based on the healing we are seeing, most of it is in the tissues at this point.
Samuel's stoma has clotted over and IS healing closed. It might be closed already on the inside. The pain of the wound is significantly decreased and his tummy is NOT bothering him at all. The skin on his butt has also improved overnight. Best of all, we all got some rest. We ended up putting him in bed with us so we could all sleep better though. Being that exhausted, it was hard for all of use to get into a good sleep pattern but I think we slept solidly from midnight to 6am. So that was great.
Samuel did not wake up feeling wonderful however. He woke up not being able to walk. I talked with our Onc about the pain in his left hip which happens every time he receives a "cancer treatment." He felt that Samuel must have a cluster of blasts there which irritate a nerve when they are attacked. I put DMSO on this area today and it stopped the pain immediately. This is something DMSO is supposed to do, halt the pain of cancer, so it is nice when it works immediately. He has been fine in that respect for the rest of the day so far. The only "cancer treatment" he received last night was the chemo with MSM to target it to the cancer so I would say it did a nice job of getting there. Both chemos we are using say they start working around day 5-7 but I think the action of MSM will bring them there sooner. I have not seen any GI issues with them and for the time being, Samuel is getting about 25% of what would be maintenance dosing for Long Term Maintenance.
Another thing to note is that we are using a supplement that activates the Monos if they are present to recognize and kill cancer so in the last two lab sheets, seeing Monos has been a grand thing because he has had enough of this supplement to activate them as well.
He took a blissful nap today and woke up feeing better this afternoon. I am certain that his body is just exhausted from everything. I know I still feel tired and unable to get much accomplished. It is just nice being home after two days in the hospital. I could ask for platelets tomorrow, but we just really need another day to recover from this last two weeks. So we will be going to clinic Monday for labs and platelets for sure. I hope that by then, Samuel will be feeling more like himself.
He is a little sad about the nose tube. He looked in the mirror and said, "I look funny with this nose tube." This is the first time he has ever noticed the tube in a cosmetic way. Just three months ago, he had a nose tube and he never noticed or cared. So I reassured him that he is a Beautiful Cutie regardless. If you see a child with a nose tube, don't stare, okay? They feel self conscious enough already. A tube is a blessing to our family because it means life. Samuel is sad about his tummy tube but happy it no longer hurts. It will be a glorious day when we can have another one placed because it will mean Samuel's body overall is healed enough for us to be able to do this for him again. I hope we can make the ND tube an NG tomorrow or Monday at the latest. Feeding through the intestine is NOT optimal but if you have to do it, adding digestive enzymes to the food you are feeding makes the job of the gut much easier as the food is partially digested. Using enzymes should be a must for any tube diet period just because you bypass the mouth which is where true digestion starts. Samuel has not suffered any diarrhea due to the feeds which is great and all his poop still resembles poop and not food.
We offer up continued praises for healing and direction. We know God is healing Samuel and as I told the RN who was here today, we expect a complete reversal to all the problems Samuel has had in the last few months and we expect it soon. We have removed the object which stood in the way and expect all Samuel's cancer treatments to work as they are supposed to from here on out. No more chasing of the tails for us. Remission, here we come!
11/16/07
We are home and the news is all good. God continues to take care of us. We are very thankful for each and every prayer put forth for us today.
Last night was pretty awful as expected and I was not able to adhere to the eating instructions especially well. When it came time for Samuel to fast, he screamed until he fell asleep in the van. Once we arrived at the hospital, he was able to distract himself for awhile but in the last 15 minutes before he went back, he just screamed bloody murder and there wasn't a thing we could do but hope that they would hurry up and knock him out.
Our GI was fantastic as always. She is our new Rescue 911. She was able to remove the tube easily but scoped his tummy from the throat before doing so to be certain there were no surprises. What she found was a perfect stomach lining with absolutely NO ulcerations whatsoever. What has been happening is that Samuel's stomach has been acting like a vacuum dragging the tube down into the pylorus, which is the lower part of the stomach leading to the small intestine and then spasming trying to pull it in and digest it. Obviously VERY painful. The tract where the tube has been is also in very good shape with the ulceration only being on the outside. There is no sign of cellulitis. So, this is VERY good news. Better than expected for sure. Best of all, the spasaming has stopped and Samuel has no more pain, and we should all be able to sleep tonight, finally!
He has an ND tube for the time being, basically it drops into the pylorus so the food going in misses main area of his tummy. The hope is that this will only need to stay this way a few days as the tract closes. He will remain on the antacid med until this happens and after that, we do not need it. Again, great news! Now we know why none of these meds helped much and only food helped. Food brought the tube back up and out relieving this spasming. The herbal infusion I made earlier this week is made of a lot of antispasmodic herbs and it is no wonder this offered relief as well. The spasms were also responsible for the gurgling gut and GI issues last week and all that seems to have righted now as well. With the placement of the tube, he has to be fed on a slow drip rather than bolus feeding. I do NOT like this at all so please pray the tract close quickly so we can reposition the tube allowing his tummy to be part of digestion again.
Samuel is not too happy about the new tube. I asked for a larger size than the standard so the food/herbs we make and use do not have to be diluted too much. The first thing I don't want to do is clog this. So the tube is bigger and he definitely noticed. If he does not adapt quickly, we will have to size down. The hope is that he will do fine. His throat is sore tonight from the scope. He is exhausted. He slept on the way to the hospital and slept on the way back. He also took a nap. It is still not enough. He is still exhausted. We hope tomorrow will show a good improvement in this after a good full night sleep. The nice thing about tonight is that he should NOT need to be fed all night and therefore, he should not poop all night. Most importantly, his liver will begin to be more efficient in ridding his body of the toxins which are obviously building up. That is most likely part of why he just feels "off." Samuel always heals best when he sleeps and we certainly have not seen this in the last two weeks. His butt is not horribly broken down right now and could easily heal up with one good night of sleep assuming we still have a WBC of 4k or more.
Mark and I talked alot about our cancer treatment plan today. After getting the good report, and a lot of research, we are going to start the low dose chemo with MSM which will hopefully target it to the cancer and leave the gut alone. I had a lot of time to think since I did not get much sleep last night and I think that our Onc is correct in saying we need to get treatment to the marrow to help clean out the blasts and allow the growth of more good WBC's. The cesium treatment makes use of the immune system and uses it to attack itself. Currently Samuel's immune system is too busy trying to heal his wound and that may still take awhile. Our hope is to reduce the blast load and improve the WBC's which are good to help heal this area. If we don't get good results with the low dose chemo in a week and don't see toxicity, we can go up on the dosage. With Samuel's gut being in pristine condition on the inside, we are free to start ALL cancer treatments. Many of which I have been holding pending seeing the pictures today just in case there was damage we did not want to add to. We feel like we have a good plan of attack with many different treatments to attack blasts similar to combination chemo but without the toxicity factor. We know with diet alone, we can control it and keep it from blasting off. But it is not enough to bring it into remission. Samuel asked me yesterday why Jesus could not make his blood. He can. He wants to. It is His plan to do so. Somewhere we are still missing something to allow this healing to come to pass so we pray for wisdom on that front.
My Mom is coming over for special prayer and communion this Sunday to settle this matter of healing for good. We continue to stand on the Word regardless of the numbers. God has not failed us. He does NOT fail. I don't expect to fail because when God is for us, who can be against us? The fact that Samuel is still alive today is a miracle in itself. Just ask our Onc. But we are hungry for healing and restoration. Samuel needs remission. He needs to have a life. He deserves a life. My other kids deserve a life. I have been up so many days and nights that I did not even realize that Thanksgiving was next week. It is amazing how time flies when you are not having fun. We have so much to be thankful for even in the midst of this war. We received the best possible report today. Samuel's gut is still healed on the inside. The only thing better than that right now would be remission. We still believe God can turn this thing around and be glorified. We believe in miracles. We believe in Samuel and his ability to survive in spite of the odds and naysayers. Praise God for a good report. We will see labs tomorrow and expect God to start making these line up with His Word. Much love.
11/15/07
Today's Labs, yes these are beauties...
WBC 11.4k
ANC 0
Blasts 66%
HCT 23.8
PLT 20K
Well, the GOOD news is that Samuel's good WBC is about 4k today which on some lab panels is considered normal. Better than the 3.1 we saw Monday. While he had no ANC, he did have 3% monos which is great. His HCT held really well from Monday and he received both platelets and blood today in prep for tomorrow. The day at the hospital was not pleasant. He had some awful moments, one of which RN Kelly was present for and she said, "Oh Jen, I just cannot bear to see him in pain like that." Yes, and it is like that every hour of the night. I think it drove the point home, at least to her, that Samuel's body is not going to do anything else but try to get rid of the tube. Mark reminded me tonight that his immune system is also not feeling like the leukemia is a threat at the moment either because generally it does not recognize the blasts as cancer until they are sick and weakened. So, we put our hope in things turning around tomorrow after the tube is removed.
Samuel perked up a lot after the blood which I am very happy to see tonight. It has been a hard week, hard two weeks really and seeing him laying around like his body is dying is NOT what I want to see at all. Tonight, he is feeling quite a lot better in the area of exhaustion and it is good to see. I don't recall him getting such a great boost from the last blood he received but I suppose he wasn't acting like he was on death's doorstep either.
Our Onc came to visit today and let's just say that the pendulum of his support vs. negativity continues to swing. He just does not know what to make of the labs and quite frankly he told me today that he just doesn't know why Samuel's cancer has not "blasted off." I could tell he was quite unimpressed with us NOT starting the chemo so I reminded him that it was chemo which got Samuel into this situation. It wasn't the cancer that cost him his gut, it was the chemo, which by the way did not cure the cancer. So if I hesitate, he needs to understand why. He is also perhaps overwhelmed by the amount of issues Samuel's body has right now and how to play the role of balancing it out. He just wants to nuke it, but he knows this cannot happen. So he cannot do what he is trained to do. If he thinks he is frustrated, he ought to live our lives a few days and then he will get what real frustration is. He talked to me a bit about the CD22 antibody that Samuel could get on a compassionate release from the company if he has activity on that cell line but when I pulled out the cytogenetics tonight, it has NO activity at all. He did a blood draw to see if it is involved but last I heard, the relapse cytogenetics look like the original so this option seems out. The Onc is also not certain the wound will even close up with Samuel's counts as they are currently. He was pretty negative today on the cancer front. His take on the situation is that Samuel's marrow is so full of cancer that even the good WBC's cannot be made in decent quantities at this point. If we can get some treatment into the marrow and decrease the number of blasts there, it would make room for new cells to grow and help to heal the wound, etc. We keep seeing signs of cells growing and while not in the quantities we would like, they are coming up, but the Onc remains negative on this front. Thankfully negativity does not bring me down too much these days. I did not bother to tell him my take on the situation. We have seen too many lab sheets that differ greatly to worry too much. I left things with him that we were certain that removing the tube will change things for Samuel's body and once our GI sees what his tummy looks like on the inside, then we will decide about chemo. At this point, in our experience with Samuel, when things start to go wrong, stop everything, fix the problem, and then see how the puzzle looks when the pieces fall. It does us no good to do anything today because removing the tube could turn the tables on this balance quickly. And if not, we will cross that bridge when we get there.
We need clear and urgent prayers for getting through the night tonight. The eating instructions bar food after 1am, switching to clears until 5am and then nothing after that. I don't know how we will do this without some serious intervention from God. Also, we need prayers for things to go well tomorrow and for our Gi to bring us the best report possible under the circumstances. We anticipate.the tract will look horrible and that there may be an ulceration on the inside end as well. This would be a better report than the entire stomach is ulcerated, the tract is full of puss, necrotic tissue and infected, the thing is so bad they put another tube back in. That would be bad. We left word with our Onc that if Samuel needs to be hospitalized, we would come back to Tacoma immediately and he was fine with helping out there. He also wants us to call and check in after to fill them in on the findings, etc, which was nice and at least more positive than the "other" conversation. We need for things to go God's way tonight and tomorrow and to be able to come home after. Home health will come check labs Saturday if all goes as planned to be sure we don't run out of platelets. Pray the bleeding is minimal tomorrow as well. I wish I could fast forward this day to tomorrow at this time.
Special thanks to Mary for the Tropical Traditions package which arrived yesterday. I took the book with me today and read it during the long day in clinic. I love packages like these! Thank you SO much for thinking of us.
Also, I was updated on the Cancer Warriors Fundraiser today. Thank you to everyone who has donated. I cannot tell you how nice it is to have cash on hand at exactly the time you need it. This has been such a struggle as of late and Mark's paychecks are taking major hits with all the work he has been missing so I know that the money from this fundraiser will benefit us all in a much needed way. May God bless you all.
11/14/07
The only thing worse than doing this with extreme sleep deprivation is watching Samuel have a horrible day. Yesterday was absolutely awful. The night before last was hideous as well. Samuel spent the day yesterday on the couch listless and suffering. In his words, "I feel like crap." He could not pinpoint why exactly other than his hip bone was hurting so badly that I had to carry him around most of the day and if he tried to walk, he just fell down. Ibuprofen was useless, sleep aids did not work, herbs did not bring relief either. I spent the majority of the day by his side, or making his food for the day. I honestly do not know why yesterday was so miserable other than that sleep deprivation is catching up with him, the wound is ruining his life and hopefully detox, not cancer blasting off. His gut has been gurgling for the past several days and his digestion has not been optimal. We think he has been bleeding in his tummy based on the last labs and quality of the poop we have seen. He went to a restless sleep last night about 6pm and I at 7:30.
We did not make plans with our GI until the evening yesterday and they have added Samuel on to the schedule for Friday at 9:15. So, as things stand, we have another day and a half of this. Ugh! The surgeon who looked at Samuel's wound under sedation in Tacoma but refused to remove it said that sometimes the body can decide to try to eat the tube. It actually looks as if Samuel's body is trying to digest his tube. It looks as if it is trying everything it can to expel this tube at this point and if it cannot come out, then it will just eat it. It sucks the tube in and that is when it is most painful. Then it later releases it and it feels okay. This seems to be a bigger issue at night, perhaps gravity or just laying flat does it. I tried to get him to gently pull his tube back out of his tummy when it is being sucked in but he just cannot do it. We could take it out ourselves but the fact that you literally cannot even bump the tube without hurting him leaves us no choice but to wait. Our Gi and staff there agree that removing this will certainly take away most of the pain and irritation at this point and we just cannot wait to get it done. Neither can Samuel. We asked her to scope his tummy at that time to see how bad the damage is on the inside so we will know what we are dealing with. Also she will drop an NG tube which we will probably have for months at this point while the site heals and we gain another remission that seems durable. It could be awhile. Whatever, we don't care at this point as long as the suffering ends, for all of us, but Samuel most.
I called the Onc Clinic today to get Samuel in for platelets and blood tomorrow. I wasn't sure yesterday how we could do a long day in clinic as bad as he was feeling. I am also not sure at all how we will manage the NPO times before the sedation on Friday given that food is the only relief for his tummy. It is NOT going to be a fun day or night. I switched to homemade almond milk for nights and this is also working well while not adding acid to Samuel's diet. But it will not count as clear fluids which we have to switch to around 1am. His worst times are as the morning progresses. We definitely needs prayers for mercy right now.
I spent some part of yesterday making a new herbal infusion for Samuel's many issues. We did not see immediate relief in how he felt yesterday but did see a good gut response. The gurgling stopped and his poop became more normal. That was good because he actually did not poop all night. His butt is pretty sore so this break was good. The night was long but not as horrid as the one before. We got up around 5am. He felt a lot better today. He was able to walk again and is not complaining of pain in his hip anymore, or falling down because of it. He is not saying he feels like crap and he has actually gotten off the couch to play. While certainly far from normal, it is significantly better than yesterday. I don't know if it is the herbs or not but we will continue the infusions which also stop tummy pain for several daytime hours so we have definitely seen improvement in that respect today. We also stopped all cancer treatments again yesterday. I am done until we get this tube out. It just feels like all we are doing is stimulating blasts for him to kill at this point. I am going with a gut feeling, aka Holy Spirit here, and we are just going to continue to nourish and heal his frail body right now and let the rest happen with God's hands until I get a word to begin again. My hope is that the marrow just needs nourishing and healing right now and is unable to produce all the healthy cells it needs to because it is still sick and damaged from the original relapse. Many of the herbs in the new infusion will help to nourish and heal the marrow. More will be revealed by tomorrow's labs on which direction to keep going with this thought, but at this point, his good WBC is again going the wrong way and if we have any hope of his wound closing up quickly At this point, we don't know why his marrow is not kicking out more good WBC's other than that it is in shock and cannot produce many good or bad cells. I am sure my Onc won't buy this theory at all, but he is not here day in day out either. Yesterday, if I had to guess, I would say his WBC was very low. Today, I think it should have improved some because he has felt better. I pray that tomorrow he will feel better yet because it will be a long day if he feels awful.
Please continue to pray for healing, improved WBC, wisdom, rest and restoration. We need all of that and more. God has not failed us yet and we continue to cry out to Him for relief.
