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
