9/29/07
Labs today
WBC 29.9k
PLT 27k
HCT 23.6
ANC 1200
Blasts 70%
LDH 818
Phosphate 7.7
Briefly, today was better than yesterday and Samuel has improved a lot tonight overall. His acidosis is better but not out of the woods yet. He will get blood and platelets Monday assuming we can hold out through tomorrow. His LDH has skyrocketed and he spent parts of the day miserable in pain from the acid and electrolyte imbalance. We hope that the bolus of fluids tonight will help more by tomorrow. Samuel's body is still killing the blasts but it is also making them faster than they are being killed off.
Please pray Psalm 91 over Samuel.
Psalm 91
He who dwells in the shelter of the Most High
will rest in the shadow of the Almighty.
I will say of the LORD, "He is my refuge and my fortress,
my God, in whom I trust."
Surely he will save you from the fowler's snare
and from the deadly pestilence.
He will cover you with his feathers,
and under his wings you will find refuge;
his faithfulness will be your shield and rampart.
You will not fear the terror of night,
nor the arrow that flies by day,
nor the pestilence that stalks in the darkness,
nor the plague that destroys at midday.
A thousand may fall at your side,
ten thousand at your right hand,
but it will not come near you.
You will only observe with your eyes
and see the punishment of the wicked.
If you make the Most High your dwelling—
even the LORD, who is my refuge-
then no harm will befall you,
no disaster will come near your tent.
For he will command his angels concerning you
to guard you in all your ways;
they will lift you up in their hands,
so that you will not strike your foot against a stone.
You will tread upon the lion and the cobra;
you will trample the great lion and the serpent.
"Because he loves me," says the LORD, "I will rescue him;
I will protect him, for he acknowledges my name.
He will call upon me, and I will answer him;
I will be with him in trouble,
I will deliver him and honor him.
With long life will I satisfy him
and show him my salvation."
We need prayers for the diarrhea to stop, it is better today. We need prayers for strength and stamina. We need prayers and for this blast crisis to cease in the Name of Jesus right NOW. We give praise to God knowing He is our refuge and nothing it too difficult for Him. Samuel IS healed, let it manifest.
9/28/07
No labs today. Home health did not have time. Today has been an extremely difficult day. Probably one of the worst ones in awhile. Samuel has been miserable and the cramping and just plain misery are taking a toll. He has felt poorly all day, had to be carried most everywhere and the diarrhea is relentless in spite of all we are doing. Our Onc ordered bicarbonate to be added to his fluid drip for overnight to help with the acidosis. We started it early this afternoon and he has improved slightly in that he can now walk and does not act like we need to be in the hospital. I hope that a night of this will help change things and get him feeling better. There are way too many variables to deal with now. The infection, which seems to be under control and still healing, the cancer which is just thriving in the acidic condition even though his body is still removing it, he is also still producing it. Then the acidosis, which is life threatening in itself if not gotten under control. We are getting labs tomorrow and will see how things play out. Things with Samuel can turn around fast when the right treatment is received and I pray we are on the right track tonight. I am exhausted and trying to keep myself "well" under the circumstances. This is NOT quality of life in any way, shape or form. We ask God to either guide us to solutions immediately or end it. We cannot go on like this. My poor children have been upset all day and without the consolation of their mom since I have waited hand and foot on Samuel trying to help him feel better. Anna has literally been ignored. Mark's Mom took the big kids this afternoon which was good for them. They needed out of here. I was thrilled when Mark arrived home. Thrilled. Everything improved after that proving once again how much more bearable this is as a family unit. So, we are trying to get the diarrhea under control and hoping that the bicarbonate will get the acidosis under control so that Samuel can get relief. It has been a difficult day and I am just exhausted. Samuel is exhausted. Mark is exhausted. God's will is for us to be healed and live out the number of our days and do whatever His plan is for our lives. Samuel is not ready to live with Jesus. He wants to live. We hold on to the Word which says that Jesus died so that he should NOT be sick but healed, whole and living a abundant life. We claim this for Samuel now in the Name of Jesus. Evil spirits, we rebuke you now, get out of Samuel's body, he is a child of God. Please continue to pray for God's will to be done in our lives, that is LIFE and RESTORATION. Nothing less.
9/27/07
Labs today
WBC 31.5
ANC 1545
Blasts 61%
HCT 27
PLT 59k
Tons going on here. Samuel is having a hard week, now on IV fluids to help with the binge/purge cycle of blasts we have going on. Today things have seemed out of control and his blood has become very acidic allowing the blasts to thrive. His electrolytes are way off and he has had severe muscle cramps all day. We think we have a handle on the situation and will be getting labs again tomorrow to see if things have improved. Tumor lysis syndrome is becoming an issue because his body is killing blasts as fast as it is making them. This is NO life and we need intervention from God now. We covet your prayers at this moment. And note that Samuel STILL has an ANC which is truly a miracle right now and for that I give praise! The mountains have become enormous around us, the deck is surely stacked against us. And yet, we trust God to save Samuel's life because we know His will is to heal all who are willing to receive and God KNOWS we are willing, we have faith and we expect nothing less than this situation restored. Please pray for wisdom for us right now and that Samuel's body continue to hold on, fight and continue to make neutrophils when that alone should be impossible. With God, nothing is impossible. Pray for us with faith. The battle has become war on a new level.
9/24/07
Labs
WBC 32k
HCT 31.2
PLT 34k
ANC 1920
Blasts 51%
LDH 553
Phosphate 7.7
A prayer warrior of Samuel sent me this today. "Like my dad used to say when our family went through a horrifying experience: If Christ not be raised, I'm screwed!" If this does not sum it all up, I don't know what does. If we did not know we had Jesus with us right now, there would just be sorrow abounding. As my Mom always reminds me, we are NOT MOVED by what we see. We are only moved by our faith in God.
These labs are not the ones I was expecting however there are some good things. His HCT is holding steady. His PLT have not dropped more than expected. They are actually higher than our Onc expected them to be today. His ANC has doubled with the WBC almost triple. His phosphate is higher than it has ever been still indicating tumor lysis. His tummy is looking a lot better today and he has started to feel hungry again. We hope that the infection is under control and that his WBC's are now attacking themselves and starting the binge/purge cycle we went through a few months back. Samuel continues to feel great regardless of what the numbers say and we are thankful and give praise that the other cell lines are still holding. It is frustrating, however, to have to start all over again. We are tired. We wonder if this roller coaster will ever end. We sit on the porch, sip coffee and dream about having a simple normal life. We go back into the house and the nightmare just goes on. How does one plan for a future when you live like this?
My GI called me today to check in which was nice. I told her I was reminding myself every five minutes that labs are just a snapshot of that very second in Samuel's body. We do so much better just looking at how he is doing on the outside. The days we do not see labs are a relief actually because we just focus on him. Tomorrow we will go in early to get platelets just because we don't want to see them fall to the point of wasting red cells. Mark took his port out earlier and it did not bleed even one drop. Nothing. So his body is adapting well to the situation. We won't see labs again until Thursday which is fine by me. Seeing them too close together was not always accurate either based on past experience.
We praise God for his firm hand on our family and pray for His peace that passes understanding to once again come upon us. Please pray that Samuel's body rid itself of the infection and that the blasts turn into normal good useful cells. Samuel IS healed and we expect this to manifest in the natural. We loose all angels to guide our every step and fight against the demons who want Samuel dead. We bind all evil in the Name of Jesus. Samuel is a child of God and only God can save him. Praise God that He alone is our hope. Without Him, yes, we would be screwed. God hear our plea for mercy, peace and relief tonight. Amen.
9/23/07
As you can see by the pictures above, Samuel has been feeling great. He has played outside the last three days. And played hard. None of this five minute stuff and let's go in because he is already tired. He and Anna have been running all over the place. He has been driving Kaysha and Daniel nuts since he discovered the Nintendo 64. Yes, we got out money's worth out of that system. He enjoys watching one or the other play it, and can play Pokemon a little by himself.
We have had a great weekend. Probably one of the most productive in awhile. We managed to get a lot of things done that have either been forgotten about or just swept to the side because other things were more important. I even got some of my own work accomplished and felt like, "Oh yeah, so this is what I used to do in my spare time."
I love the weekends for many reasons. One, Mark is home and our family is together as a complete unit. Since Samuel's relapse, having Mark gone has been very difficult on us all. He has hard days waiting for news here, or not knowing what is going on. Or worse, I call him with bad news, or suspicions which usually turn out right and ruin his days. Things feel out of control when he is gone. Things feel at peace when he is home. Everyone is happier. That is most obvious. This weekend has been peaceful.
I love our weekend rituals. Brunch on one or both days. Mark makes great breakfasts. Everyone love it, including Samuel. It is a treat to have everyone sit at the table and we did that today. Coffee on the porch, a little simple togetherness for Mark and I. Something we can enjoy regardless of the situation. Coffee has really got us through a lot of horrible things. Mary keeps asking if I am eating. Since this started I have dropped over 15 pounds. Hey, I could use the loss, so not a big deal. But she worries. It is hard to eat when you are busy or if the day is difficult. I do worry a lot, but mainly about the unknowns. Like, having Samuel's complications get out of control as they did in 2004. That worries me a lot because things with him can turn on a dime. So I pray a lot and try to get beyond it or do things about it.
The antibiotic change has been good. It has taken three days on it to get to the point where Samuel wants to eat. I have been feeding him the whole time, but now he is also asking to eat so his tummy must be better. I figure that tomorrow should be an even better day yet. We got rid of the diarrhea for a few days but it is back tonight. By day four of the antibiotic we just changed back to, he was dumping dead cells like crazy and I wonder if this is the beginning of that again. In thinking back to Seattle and how his labs looked while there and after we left, it seems like his PLT recovered with the help of one of the abx and the red cells were recovering with the other. When one was changed to oral, the reds declined. When we stopped the IV, his PLT started dropping. I see no evidence of low platelets currently and his face and color look a bit better each day so I am expecting to see better labs all around tomorrow. Basing that of course, on how well Samuel is doing right now. His wound around the tube is about healed and the skin is peeling a bit. The bruising, however, remains unchanged. We suspect that the infection must lie there. We have talked about the abx and the blasts several times this weekend and it is my feeling that we cannot go off the abx until we see the bruising fade and the blasts gone. Our GI originally thought 3 weeks and it could very easily be that, or longer. I cannot believe how long we have had to deal with this now, and how hard it has been on his body overall. It will be so nice to see this healed and I hope that we don't have to wait til Christmas for that to happen.
Samuel was so happy while inpatient. It occurred to me that he hasn't been that happy in months. He was nice to all the RN's and MD's and even let visitors stop in without getting upset. Since he has screamed in so many caregivers faces as of late, this trip really stands out. We wonder if he has just dull pain that he has grown accustomed to and does not complain about it since it is always there. That is sad. I know he notices acute pain because his butt is back to hurting and he definitely lets you know that. A little bit of ibuprofen works wonders. I am so thankful we can use that again without issue. But even i look back at the hospital stay and think, "Wow, so that is Samuel when he feels good!" I want him to feel like that every day. And I am thankful that his body has the capacity to wait on us to figure out how to get it better.
This weekend has been extra special for me. A bit over three months ago, we found out Samuel relapsed. Something I never dreamed we would deal with. And he was given three months to live, at best, with no conventional treatment. We are now beyond that mark. Samuel is thriving regardless of what his labs show. When you are told your child has three months to live, you tend to savor each day more than you ever have before. You try to memorize every look, word, the feel of their hair, skin, the sound of their voice and the sound of their laughter. You hope that you will never have to pull these memories out of storage from your mind because they died. You take lots of pictures and videos. You try to make sure their every need is met and that they don't hurt. You try to give them everything they want that will make them happy even if it is for a little while because you don't want to regret it later. You hug them a little tighter at night. You listen to the sound of them breathing, their heart beating, their feet running, and their mouth talking. You take every hug and kiss you can get and then some. You savor everything and pray that these are not the last memories. You think about Christmas and pray they are still here for that. You watch your children play like angels and try not to imagine what it would be like if there were only three. You remind the kids to be nice and spend time with each other each day while trying not to scare them about the future. You pray and you NEVER give up on them. You do things you have never done before because you are doing something you pray will have a happy ending. The only other choice is death. We have come way to far for that to happen. Samuel deserves more than two days at the hospital feeling joy. Where does this roller coaster end? I know what God says about life and healing and my faith grows stronger each day in spite of the mountains we see around us. None of this has ever been easy but we continue to put one foot in front of the other and saver each day hoping and praying that Samuel's tomorrow's will always come. For now, we give praise for this day of peace and fun for all. God leads us forward and we praise Him for that. We thank you for your continued prayers. Praise God, Samuel IS healed. We will shout it out to the world until is manifests on paper. Praise God, Jesus is still alive and with us today.
9/21/07
Today's Labs
WBC 12k
Blasts 47%
HCT 31.2
PLT 53k
LDH 488
ANC 960
I am actually pretty happy with these counts given what the day has been like. Samuel woke up crabby and it was obvious he was going backwards again. I mulled it over with RN Kathy who also noticed he was not himself and told her that I think the abx switch made at the last minute in Tacoma before we left is incorrect. In 48 hours time, he has definitely went backwards. His temp was up to 98f, which for anyone else, is great, but for him, is starting to go up. I called the Onc immediately after her visit and asked if I could switch back on the abx and give it immediately. He agreed that this seemed the best idea at the time. He also noted that Samuel looked better on our discharge day than he had ever seen him look. Indeed, he was probably the happiest I have ever seen him on that day. Yesterday was okay, but today it is obvious that we do not have that boy anymore. So I gave the abx and he improved almost immediately. Add IV therapy to my list of things to do. Until this week, I have left the IV stuff to Mark but now I have that to do as well. Samuel's temp normalized after as well. I think the platelets dropping by more than expected is telling that we were not on the right abx as well. The switch for Samuel is actually better because one is every 24 hours and the other every 8. It was two abx every 8 hours. So hopefully by tomorrow we will see our boy feeling happier again and see these other counts going up, blasts going down. I think the blasts are also very telling of the abx change not being right.
I had a good talk with my Onc this morning. He seemed very optimistic today, which I appreciate very much. He feels that Samuel's ANC is enough given the situation right now and we are so lucky to have it! I praise God for that ANC still notching up. Samuel's "good" WBC is also good enough for the situation if the abx are correct. We would like to see the blasts turn into neutrophils soon obviously but will give praise for what we have today. Our Onc figured that if his PLT were 31k on Monday, that would be really good. If higher, that would be even better. I told him I like PLT above 250k and HCT about 35 and he said, "He'll get there." Now that is improvement. He also mentioned that he won't be around at the beginning of the week, our former Onc is on call. Hopefully, I don't have to call them at all, no offense to any of them. Just want a quiet uneventful weekend. I want Samuel to be happy and enjoy life as well as the other kids. Mark and I would like some time off the clock of watch, wait, worry, and wonder as well. I really need to get some work done but it is so difficult to switch gears sometimes.
Thank God for Kaysha. She keeps those babies entertained and busy all day long. All the kids are getting better from their colds and I am still well. I feel physically and emotionally better today which helps a lot. I actually expected Samuel's labs to look worse today given the symptoms I was seeing so it helps a lot to see them marginally better overall. He had some really funky chemistries from being in the hospital and dropping so many blasts so fast and these have all cleared up today so I am really happy to see that as well. Things are slowly going in the right direction but as Samuel says, it is SO HARD to be patient. We have so much to give praise for. Samuel HAS a decent good WBC, his HCT seems to be holding, he does NOT need PLT, hopefully he won't and he has an ANC. This certainly takes a lot of the sting out of blasts. Praise God for continuing to lead us forward and assembling our army of support behind us. Thank you for checking in on Samuel. He continues to fight. And as I tell the Onc team whenever we speak, he plans to live. Much love.
9/20/07
Today's Labs
WBC 11.9k
HCT 31.1
HGB 11.9
PLT 63k
LDH 492
Phosphate 6.2
ANC 952
Blasts 49%
Even though the blast count has crept up again, the ANC has also risen, platelets are holding remarkably well and so is the HCT and HGB so we are pleased with these labs. His body is doing something that technically, it should NOT be able to do, make blasts and mature neutrophils. For that we give praise! Seeing the ANC go up is a very positive sign. Overall, Samuel has had a great day and has been thrilled to be home with this siblings. Kaysha, Daniel and Anna all have colds to varying degrees. Samuel had a nasal quality about him from Monday on as well so they may all have the same thing. I just pray that Samuel's symptoms do not worsen with all the other things he has going on right now. Mark has also had a lingering cough to deal with. Knock on wood, I am the only one NOT sick. Hopefully that will continue because there is just way too much to keep up on. I am really tired today and took a short nap that wasn't overly restful so I will keep this short. I will be glad to go to bed tonight We will see labs again tomorrow, everyone is watching those platelets to be sure they don't fall too low. Our Onc will transfuse him if he gets to the 40's last I heard. Today is the 36 hour mark for the abx he is on. It was about the 4th day at Children's on these abx where we started to see Samuel's marrow recover and make reds and platelets well enough to declare remission. Course there were not any blasts involved at the time either. We know this will most likely be an up and down scenario just as it was a few months ago with the labs all over the place. His WBC not going up out of the normal range is also a very positive sign to us. Please continue to pray for Samuel's body to do all the things it needs to do to heal the infection and kill the blasts in the Name of Jesus, Samuel IS healed. Amen.
9/19/07
We are home.
What a whirlwind! And what an incredible God we serve! Praises for His guidance in the midst of this battle yet again.
Stepping backward. Monday, Samuel had a low grade fever and was just off. His tummy was bothering him all day and worse yet, I clogged the g-tube we had put in the week before and we could not get a replacement. All I could get through it was clears and he could not even tolerate much of that. We scrambled all day to get another RX for an oral abx which was not filled and delivered over the weekend. But by the time we got it, it was too late. His G-tube sunk so far into his body that it was obvious it was swelling and things were going downhill fast.
Monday's Labs.
PLT 91k
HCT 22
WBC 9.6k
ANC 960
52% blasts
LDH 474
Phosphate 6.9
This did not please us at all as you might imagine. We ended up paging our Onc to let him know we would be going to the ER for IV abx instead of oral. One of the things I did for Samuel when he relapsed in June was to give baking soda and vitamin C together for alkalinity and to kill microbes. I stopped after we started the cesium because it did not seem as though we needed this extra punch. I gave him this combo before we left to the ER. He was feeling better within an hour. It was incredible. Since that was one of the only things I got through his tube that day, I knew it was from that combo. By the time we arrived, he was back his usual happy self, pleased to be there.
In a matter of an hour, incredibly, they drew labs, did an abdominal x-ray and CT. Both scans showed nothing remarkable so no pus pocket to drain, abscess, etc. Just swelling. Lat's that night, Monday night were as follows.
WBC 12.5k
ANC 780
Blasts 60%
HCT 21
PLT 78k
And again, we were not pleased but still clung to the fact that his labs got whacked out the minute the infection took over and it came on with a vengeance. So Samuel received the new IV abx and immediately, his low grade temp disappeared and he felt even better. We arrived at 7:45pm and by 10:30pm we had a room. That is amazingly fast for those of you who don't know ER's well. We have not been inpatient in Tacoma since 2004 so I was not really certain I wanted to be given the memories we have from that era. But we had many of our familiar RN's and MD's upon arriving and while I was alone with Samuel most of the time, I had a steady stream of friendly faces to my room both days. It was so nice and I was reminded of why we loved the caregivers here so much. RN's who had not seen Samuel in any condition other than comatose came in and hugged him and he had not a clue who they were. He has no memory of any of it, thank God.
So, I did not get much sleep Monday night as you might imagine. Mainly, my mind was trying to figure out what happened and what we needed to do. And I kept coming back to the same conclusion I have had the entire time. Get rid of the infection, get rid of the leukemia. Obviously the infection was WAY too much for his immune system to control and when it flared up, all he could make was blasts in response.
I learned something I did not know yesterday. Blasts are actually immature neutrophils. That explains why if you are making blasts, you generally are not making neutrophils. We were very concerned about that because we did not want to see the ANC die after just regaining it.
So, Tuesday, I got one of my Fav RN's Cathy which was a treat. Had her today too. I told them first thing that we needed to get Samuel a new G-tube. I brought a replacement from home for them to swap since they did not have our style tube there. It is bigger than the one we had so I wanted it done under sedation. First they thought they would try to unclog it but I told them to forget that, just change it because I perforated it trying to unclog it. And at 10am, 10am!!!!!!!!! They came to get him. We are used to having to wait all day. So, the sedation RN was fantastic and seemed very familiar. Samuel, however because very upset over it and forgot that he was going to be sleeping while they did it. The ICU MD doing sedation came to meet us, introduced himself and I reminded him we already knew each other. He was the MD on at Samuel's original dx in 2004. So, he remembered then and we talked a bit. Samuel was so upset that he actually walked out to the hall and put him out. I was able to go in, leave instructions for what I wanted done, and then left. Said a quick prayer for things to go well and sat in the waiting area.
A few minutes later my Onc came to meet me. The first thing he asked was if he could do a bone marrow while Samuel was asleep. I was quite shocked. I asked what the point was when we could see from the blood what was going on. He said he wanted to tell me what doing the bone marrow would mean to him, and then would ask what it would mean to me. To him, he would be able to find out if Samuel was making any good cells at all at that point. Or if they were all blast cells at this point, he just wanted to do as few interventions as possible and get us home. Or perhaps we could look at our treatment options again. What did it mean to me? Pain, suffering, and no good reasoning. It just did not matter. I did not need a bone marrow to destroy my hope at that point. So it did not happen. We explored treatment options a bit again but I really took this meeting as if they just did not hold out any hope for Samuel at that point. I reminded him that Samuel has been in worse places and that we might be down but we were not out. I expected a complete reversal to this. He mentioned that when I told him that two months ago, I was right, so he was going to hope I was right again. I told him my theory about Samuel's infection causing the leukemia to come back simply because it was too much for his immune system to handle. Get rid of the infection and get rid of the blasts. His theory was that the leukemia was too strong and that the infection was the result of the leukemia coming back. Minor theory difference on paper, but major difference IRL. We talked about Samuel's blasts vs. overall WBC. His WBC was not out of control, it could have been 25, 50, 100 by now, and it was 12. So some part of his immune system is trying to keep the leukemia in check. I reminded him that we started with a WBC of 50k and 84% blasts and got that in remission for a month. We have been in much worse places. Yes, this is a setback, but let's troubleshoot instead of fearing the worst. So I told him the things that reversed this cascade of events at Children's. Blood was next on my list of things to do right after the tube was done and I could feed him again. Samuel was returned to me right in the middle of the meeting which was good because it did not seem to be going well. I asked Mary who was present if he was trying to tell me that they are done with us, or they are ready to give up. She said they would never say that. I told her that they could think it all they wanted, but we are NOT giving up on Samuel. So things were left as such for the time being.
Samuel received blood and was able to be fed and immediately I could tell by his poop that he was killing cancer cells and detoxing. Meanwhile their Infectious Disease MD came by. We also know him quite well. Samuel thought I called him Dr. Shorts, so he immediately started calling him Dr. Underpants. This particular MD has a real dry sense of humor so I was waiting to see how that would play out. He laughed a bit. Then Samuel started poking his fat rolls with all his nearby toys and calling him Dr. Underpants and I really thought he would lose his patience, but he was fine. I brought the pictures of the wound from Children's, now a month old, and showed everyone including this MD. He asked what culture grew and I said it was diptheroids. He said, "That is a hell of a lot more than just diptheroids." No one I showed the picture to had ever seen anything that bad. We talked about abx and what was working, how I did not want many of them to take home, etc. We ended up coming home with the same ones we were on while inpatient at Children's. Guess they should not have changed them when we left. Hindsight is always 20/20. This MD came by today and as soon as he walked in the door, Samuel said, "Hey look, it is Dr. Underpants again." This time we both ROFL. I caught him in the hall and he mumbled under his breath, "Dr. Underpants is going home now." Everyone who heard Samuel called him this was ROFL.
When I pulled out the bedchair to sleep the first night, I saw the crevice on the top where I used to put Anna when she was 7 weeks old to sleep. I just looked at it and looked at it each night after I pulled it out. Hard to imagine she fit in there. Hard to imagine she stayed through all that night mare. I would wake up and just feel that space and imagine her being there. Remembering what her little body felt like and feeling sad that so much of her childhood seems like we missed out on enjoying. Especially the baby stage. Samuel and I called the kids last night. They stayed two nights with Mark's parents while we have been gone so Mark could work. Someone has to "finance" this lifestyle. Talking to them, especially Anna who sounds so big on the phone now, really hit home how much we have had to endure. How long this has taken. I called Mark later and said that most families I follow who have to go through ordeals such as ours eventually have a "normal" life when their child dies. Up until then, it is never normal. And when they die, it is not normal then either. Just free of illness. It is a tragic reality but what do you do? Pray for a favorable end result and this drama to stop.
So, after each abx infusion, Samuel started dumping dead cells. i can tell by the smell. If you have ever cleaned out a horse's hoof and you get down to the very bottom of the foot, it has a very distinct odor. That is what dead cancer smells like. I know it well. After Samuel received blood, this process of pooping out dead cells escalated. This is such acidic diarrhea. You can just tell how acidic cancer is by what it has done to Samuel's skin. It is completely broken down. Now that we are home, it is easier to deal with this aspect anyway. We asked for IV fluids to run all night last night simply to help detox. Samuel's ph through all this was never below 7.2 so I was pretty certain that these cells will not survive long, and it seems obvious now looking back at labs, and last Monday's blasts, that his body was reacting to the infection and the blasts were just his recovering marrow's attempt to fight. This seems more likely to me than a complete "relapse." We chose not to get labs yesterday. Our Onc came to visit again later in the day and could hardly believe the change in Samuel. He played with him for awhile and then asked me what I wanted to do treatment wise. We talked about a few different options earlier. I told him I wanted to wait because I still believed in my theory and it would seem his cells were now leaving his body.
We slept a lot better last night. Samuel talked in his sleep both nights. It was funny. We knew yesterday that we would come home tonight. They drew labs today and we thought he would need PLT. I was so pleased to see these today.
WBC 12.5
ANC 875
Blasts 42%
PLT 68k
HCT 33.6
Samuel has never gotten such a huge boost from a red cell transfusion so we all are in agreement that he is still making reds. And his platelets being only down 10k from Monday means he is also making PLT. He was dropping 25k a day over the weekend. His blasts are down a huge percentile, more than he has ever dropped in two days time. Usually they dropped a few percent a day. Samuel also had some very immature neutrophils, which are also good cells, NOT blasts in his smear and this was also a very positive sign to the Onc. He says he will be very interested to see what the next few days have in store. Samuel continues to dump dead cells. This is very toxic and hard on the body so we are working hard to support his body with fluids as it detoxes again. We talked about this "blast crisis" not setting us back much at all overall especially if it does not inhibit the red cells or platelets at this point. Not needing transfusions takes all the sting out of the blasts. So, as things stand, we will see labs tomorrow and Friday too. Samuel was literally bouncing off the walls today while there.
I asked Mary this afternoon if she had a talk with the Onc after I talked to her yesterday because he was certainly singing a different tune today. She told me that he said, "They saved his life. I am not certain that I could have, or anyone could have. Whatever they want to do, I will do." She hoped that would make me feel better. It does, however, I hate meetings when everyone feels as if the other shoe has dropped and you are out of options. That makes me want to climb onto the ceiling just to prove that I will not be backed into a corner and give up. Thankfully, I did not get that impression from them today. Overall, the trip in was good, just a huge rollercoaster. Seeing all the friendly faces was great. Having things go smoothiy was wonderful. Not having to fight the system to get released was fantastic too. I am afraid it is going to take me the rest of the week to get it all out of my system though. Overall, it was nice to be admitted and released quickly back home. Especially from there given the last time we stayed months and then transferred to Seattle. Being able to come home gives some closure on that accord.
Ending this with thanks for your prayers! Praises to God for lighting our path through a huge dark spot. It is hard to be strong when everyone around you feels like you are defeated, I will tell you that. Thankfully, we have the Holy Spirit's voice showing us what to do. Praise God for that. Unfortuanately all of my other children came home from Mark's parents with colds. Pray that Samuel NOT add this to his list of things for his body to do. I told Mark tonight, while his body may have a lot of things that are wrong right now, he has an incredibe coping mechanism inside it to fight and conquer. Praise God for giving us such a strong boy!
9/18/07
PM Update
Things are well under control tonight and I have been extremely pleased with how things have went here with only few exceptions. Looks like we will go home tomorrow with now 2 IV abx, to run every 8 hours. The fevers, the pain, the swelling, ALL GONE. He can eat again. As fast as it came on, it has also left. We did not see labs today but will tomorrow. Samuel received red blood today because his HCT dropped to 21. He may also need platelets tomorrow before we go. It is obvious tonight that his body is rapidly ridding itself of dead cancer cells again. It is not a pretty or fun process but it would seem that getting the infection in check and getting red blood has changed the terrain for the blasts and they seem to be dying. We will know more tomorrow for sure. Cannot wait to get home. Keep the prayers coming, Jesus is in control. This is God's battle not mine, so I will rest knowing HE has this in check.
AM Update
Samuel's cellulitis worsened rapidly yesterday and we ended up going to the ER. His stomach is swollen on the inside again, just as it was when this started. He had a slight fever which seems to have resolved with a new IV abx added. His labs are whacked out showing 50% blasts and ANC falling. We are in Tacoma not Seattle this time because of the blasts. Samuel continues to do great, in spite of his tummy. We all feel like this infection is just too much for his immune system to manage so please pray for us to fine the right treatment for this which will take care of it and get his tummy healing and working again. I feel certain that getting this under control will also right the leukemia.
We appreciate your prayers for us and our MD's here handling this. NO weapon formed against us shall prosper! Samuel is healed. We expect it to manifest.
Much love.
9/15/07
Yesterday was a busy day. We had a useful appointment with our GI and the plan is to go back on IV abx until the bruising is almost gone and have a CT done next week to determine if there is anything under the surface we are missing. She agreed that the site looks worse than it did two weeks ago. We discussed Samuel's labs from earlier this week, and then Thursday's labs and how they relate to a possible infection being there. It seems that us changing out the tube really irritated the inside again, possibly bringing forth whatever has been lurking under the surface similar to the way Anna hitting the tube many weeks ago sparked the major response we saw in his skin initially. It is not overly sore and he is certainly not being stopped by it in any way so for now, that is a good thing. We discussed the blasts from earlier in the week and my wondering if they are from this wound bleeding internally, etc. She, like I, did not veto this idea as the Onc did simply because the blood in there is a mix of old and new for sure. Certainly it was that set of labs that set us out looking for something else and the Holy Spirit telling me clearly it is the wound. And along with the LDH going up showing cellular damage, Samuel's phosphate has risen in the last ten days as well. It went from too low to too high. Every cell in the body has phosphate and the bulk of it is in the bones. I asked the Onc who stated with a growing child, it was not overly significant. Marrow recovering might also raise the levels as things are healing. I asked our GI if this was somehow related to the wound and she immediately went to look it up. What she found is quite thought provoking. High phosphate can be related to tumor lysis. Tumor cells have four times a much phosphate as normal cells and when they break apart, they spill into the bloodstream. So, with that in mind, we are back to wondering of this is a cancer spot as well as a possible infection. As I have stated previously, I think the two go hand in hand. Leukemia can certainly "hide". Tumor lysis is good because it means cancer cells are dying but again, we are not certain if this is what we are dealing with or not. There are many other variables such as red cells breaking apart can also lead to high phosphate levels. He has certainly been losing those. Phosphate is in every cell in the body and having tissues being broken down could also lead to higher values in the blood. Platelets also go to the site of infection or damaged and bleeding tissues and they are being spent. This is where I need an Onc's mind to weigh in but my Onc seems to not want to think outside the box currently making me wonder why I have one at all. At any rate, we continue to treat, watch and wait.
My Onc did state something useful via e-mail this week. "I think about Sam's therapy as slower/gentler treatment (than the sledgehammer approach of chemo) which also allows his immune system to combat the leukemia. " That certainly would line up to the immune response we are seeing both in his labs and in the area of the wound itself which has darkened and started to swell just a bit over the last few days. Certainly that is an immune response, but we wonder to what? Monday's labs should be yet another piece to the puzzle. It is exciting to know that Samuel's immune system is fighting it's own battles. Part of our treatment regimen is to strengthen the immune system to handle whatever residual cells may turn up, so if there really were blasts on Monday, his body handled them the way it should.
My GI, I know, will ponder this all weekend, as will I. She is the type of person to leave no stone unturned. She asked me for the info for Samuel's treatment for a friend. As she said, "If you know there is something else out there that works, it is your obligation as an MD to share it." I have shared this info with a lot of families thus far but I cannot make the choice for them. Most either don't have the mindset to take the leap of faith they need to do this, or still trust their MD's not to fail them. These are two things we learned very early, MD's will fail you and be willing to try non-conventional things in the name of cure. I know of one other family now on our protocol and their MD is solidly backing them up. PTL for them because they are very fortunate to have an Onc willing to support something they have not been trained to do. I know for a fact that there just are not many Oncs out there like that. But the word is getting out! PTL for that too. I am thankful I have at least one MD on our ship who is willing to think outside the box and wants to save a life no matter if the treatment is conventional or otherwise. We talked one day about how MD's are so into literature, clinical trials, stats, etc. It is just how they are trained. I told her I am only interested in saving my child's life and I could not care less about stats, clinical trials, etc. We handed our Onc clinic our plan and did not bother to ask their opinion. I already knew it anyway. I did not care. Still don't. If they want to help, great. If not, don't stand in the way. I call them, ask questions, pick their brains, and then research, draw conclusions based on what I know about Samuel's body, ask for God's direction and make my own choices. That is how it has been for months. One of the RN's in clinic told one of our home health RN's that "we do whatever we want." Well, they have nothing to offer us as a non toxic treatment. What other choice is there? Let him die? I think not. Many have asked who is overseeing our treatment and guiding us. Well, look up. Look at the face of the Lord. I have an Onc. I have a GI. I have a support person for the protocol who mainly works with adults, and I have God. That is it. It is an extraordinary amount of work on my part to do what I have to do to save Samuel's life and keep the household going and keep the kids schooling properly. It is worth every minute. I have spent 3 plus years now educating myself about cancer and alternative treatments, herbs, nutrition, etc. hoping I would not have to deal with relapse. I have watched children die for years now and hoped and prayed mine would not be one of them. No one wants to be in this position. I am just so thankful to God that with Him as my ally, my guide, we cannot fail. Nothing is impossible to those who believe. We believe in God's medicine. Your health, the health of your children, is in your own hands. No one will put more thought into it than you. Are you thinking about it? You should be.
We will see the GI again on Friday after the CT pending it gets scheduled. Please continue to praise God for His guidance and for Samuel's healing.
9/13/07
PM Update
I just spoke with the Onc about the labs and the wound. His impression from the chemistries is that we do have cellular breakdown. Samuel's LD has been going up for the last ten days now. Today it was 307. We have previously used this number as a tumor marker but it basically monitors large amounts of lactic acid which is given off by dead or damaged cells. It can be a useful tool for cancer but it is pretty generic in that it monitors all cells, not just cancer cells. Red cell formation also gives off lactic acid. We talked about hematomas and the healing process on a wound such as this and his thought was that new vessels are probably being formed to get to this and help heal it. This would spend lots of red cells. Also, platelets would be used to help the new vessels which would be easily damaged. We definitely see evidence of both. Plus there could still be some pus issues so we can explore that more tomorrow. He thought that Samuel's immune system was mounting a great response to the work that needs to be done at the wound site based on the high WBC and very nice ANC. Anyway, the conversation was informative and useful in understanding what is happening here.
We talked about the blasts on Monday. He said that perhaps the lab was overzealous in calling them blasts because they always want to be extremely careful not to miss them. Or, perhaps they just were slightly abnormal looking lymphs from a newly recovering marrow and they were called blasts because of that. According to the Onc, a person without leukemia should NEVER have blasts in the bloodstream. Not even if they have a sudden massive infection or injury. A person such as Samuel having marrow make abnormal cells as it is recovering from cancer would not, however, be unheard of.
Our Onc does agree with me about one thing. We won't see accurate labs until we see the wound heal fully. Only then will we know how everything stacks up. Until then, we praise God that Samuel's immune system, while fragile for sure, is working nonetheless.
Special thanks to RN Cindy for being so grounded and helpful to me today! It is really nice to say "blasts" to someone who does not immediately freak out, think the worst and dive out of our life boat.
Labs Update
WBC 12.4k
HGB 9.1
HCT 25.9
PLT 198k
ANC 3110
Blasts 0
Praise God! I have to believe that whomever looked at Samuel's differential on Monday was seeing things. NO blasts called today. His HCT and HGB actually went up slightly, but we will take it. Mark and I decided two days ago to restart one of the abx that we know helped with the cellulitis previously and based on the labs, I think it was a good choice. Samuel has to be bleeding somewhere because these platelets are going down and being spent. His WBC being up tells us his body is working hard trying to "fix" something. I definitely think we are on the right track. This is the first increase in HCT and HGB we have seen since leaving Children's three weeks ago. Praises to God for that and leading us where we need to go. Samuel is healed in the Name of Jesus. We claim it, it is DONE.
AM Update
I sent the pic I took of Samuel's tummy to my GI yesterday stating I think we still have a problem here. While the crater has healed a lot, the bruising on the side has not changed much and is still hardened, tender and sore. We are set to see her in clinic tomorrow. Our home health RN Cindy was here today. I really like her because she has a lot of experience. We had a long conversation about this wound today and she agrees with me, there is still something going on. I looked back at Samuel's labs and his HCT upon leaving the hospital three weeks ago was 33 and at last check, 25. That is too much loss when everything else is recovering to not signal something. The only place he could be bleeding is here. Her opinion of the blasts showing up was that his recovering marrow is trying to respond to this possible infection and is just working overtime. I told her about the theory of cancer starting in the cellular tissues and spreading and she agreed that based on that theory, we will not rectify the cancer without rectifying the wound first. She is going to fax me the labs tonight so I may have them in hand for our GI tomorrow. She also suggested we ask to get a CT of his tummy because she feels there is some swelling. This is something we have wondered why no one has ever done. Especially originally. Samuel is also complaining a little about his tummy hurting on the inside. It may be from swapping out the tube, or it might be the thing starting up again. Cindy thought some of the bruising on the outside is still fresh. And possibly his red cells are not being stimulated to produce more to make up the difference because of this problem, especially if there is another hematoma. So hopefully between today and tomorrow we can get to the bottom of this again. Mark noted that the wound is shiny again and a lot of the tissue looks like scar tissue to him now.
So we wait on labs for one piece of the puzzle. I sent my Onc a pic of this yesterday as well letting him know I think we still have issues going on here. He did not think it was a cancer spot however. He is more focused on the leukemia aspect of this and dealing with these two things as if they are separate issues and I believe they are the same. Fix one, it fixes the other. Time will tell. How many times do I have to ask this Onc clinic to treat him as a WHOLE person. Not just a leukemia patient. I am concentrating on this as a problem of his entire body. The Onc clinic sees blasts and immediately decide what we have done has failed (as they expected) of course. They forget that this is just ONE PIECE to the bigger puzzle of Samuel's body.
My GI does treat Samuel like a whole person when she deals with us and I just embrace that. Perhaps that is where Oncologists are missing the boat in the cure of cancer, they just treat the symptoms of cancer and ignore the fact that it HAD to start somewhere. Get to the core of the problem, change the environment and you get the cancer out. That is what I believe and intend to prove. May God continue to lead us with the sweet utterances of the Holy Spirit.
Samuel remains well, feeling just great. As Cindy said, he is not suppressed at all in spite of everything. He is devouring school, much like I did when I was young. There are not enough workbooks to sustain him because he is so eager to learn. He is quite brilliant and I just love how quickly he picks up on things. He also gets very disappointed if his work is not perfect. He will go far in this world. It is fun, amazing and exciting to watch. Kaysha must certainly have it in her to be a teacher for small children. It just comes naturally for her.
Praises to God for keeping us going and looking in the right directions for Samuel's cure.
9/11/07
PM Update
Well, today has been pretty awful but ended on a good note. I did not talk to my Onc at all. Today must have been his day off. At any rate, we already decided how to proceed with the wound and treatment so he can weigh in tomorrow though his opinion won't change our direction most likely.
Oh, I clogged Samuel's tube up so bad today that we ended up having to pull it out. After several hours of trying to unclog it, we had no other choice. He managed to eat well in between his regular tube feeds though so that was good. But for me, stressful. We did not get a spare when this temporary tube was placed and the way the connections work, you can flush through but cannot draw out. That is nice because stomach contents don't leak out, but you cannot unclog something big either. The size of this tube was also a lot smaller than we usually use and it has made feeding Samuel a real pain. We had 2 other tubes available thank GOD! Or this would not have been a good night at all. But both were a size bigger than the one we have. So, I pulled the tube out and it wanted to be stuck. Samuel was not happy at all. And we made it bleed out, which in light of what we believe is going on, is probably a good thing to get it draining out again. Mark was able to get the next size up tube in with little difficulty and now we can feed him properly again. And this larger tube doesn't seem to clog or bog down with the thick food.
So, now that we know sizing up is not a huge deal after all, we are going to cancel the tube replacement for next week in favor of letting this drain more and hopefully clear up all the issues period. Then Mark can just size up til we get back to our correct size tube. Thank God his work had some old ones laying around! It has not been a fun day at all but we both feel like getting the old one out and a new one in will be a good thing period for a variety of reasons. And now we can save ourselves a very early morning trip to Seattle for a five minute procedure. Amen to that for sure.
The babies' new school books arrived tonight and they were eager to get started. They did really well and the books are just so perfect for them. Samuel is doing great and Anna is not all that far behind him in getting the letters and their sounds. How cool will it be to see them both reading by the end of the school year. They are both so excited. Daniel got a few new books too but he is not quite as excited as the babies.
We are hoping for a quieter more "normal" day tomorrow. Labs Thursday......oh we cannot wait for those. We stand on the Word regardless of what we see on paper. Samuel IS healed. Jesus IS Lord. Praises for Samuel's complete healing and our family's restoration.
AM Update
I spent some time talking with the support person for our protocol this morning. After describing what I have done with the wound and DMSO, he is 99% certain that this wound is a cancer cluster based on the way it has responded to ph therapy. So we have a plan of poulticing it again to try to draw the cancer out. He is also pretty certain it is still bleeding on the inside based on the dropping red cell count and aiding the breeding going on inside it. I have sent my Onc a note this morning and am waiting his response. I think we will definitely ask for a transfusion if we do not see the red cells improve Thursday just to stop the low oxygenation process in it's tracks.
There is a ton of info on cancer starting inside tissues, in a wound or damaged area of tissue. It can breed and fester microbials there until it outgrows it's space and spreads to a weakened area of the body. I have wondered about the accident with Anna jumping on Samuel's tube, and then a few weeks later, the relapse. Then hindsight, looking back and knowing this has festered the whole time. Having it treated with abx stopping it and the cancer going into remission. By looking at the wound, it definitely gives the impression that it is healing. However, the bruising, funky skin, low red cells, and now blasts resurfacing makes this theory still very plausible. Treating the wound, and the invasion of microbes, bacteria, and cancer should stop the progression, at least in theory. The entire time we have treated Samuel's cancer, it has been with the thought that this was a microbial invasion and was treated as such. We may revisit abx for this JIC it helps the situation.
More as I know it. Praises to God for the Holy Spirit leading us on.
9/10/07
Today's Counts
WBC 8400
HCT 25.2
PLT 229k
Blasts 5%
ANC 2500
Did you read that right? Yes, they called blasts in Samuel's labs today. I really thought I was done writing blasts on the labs. How frustrating! We were not impressed at all, of course but remain firm in our Lord. We know that Satan comes to steal, kill and destroy every work of God and it just figures that when we are at a point of moving on, that evil would try to strike fear into our hears and make us turn away from God. Here is where most believers lose their faith and lose their healing. In a moment where everyone doubts God's work and God's plan. I do not doubt. I do not lose faith in our Miracle and our Restoration. Our Oncology team has "humored" us until Samuel's remission and then eagerly and joyfully jumped on the boat in uncharted waters with us. Today, I go the distinct impression that they were all jumping out of the boat to rush to the safety of shore before droning with us at sea. Well, look out for sharks. Jesus WALKED on water and we plan to as well.
So, here are the things I was told today by our Onc. One, whomever counted the differential might have erroneously called lymphs blasts knowing that Samuel had recently relapsed. Apparently that has happened before and they can look very similar. Also, marrow recovering can purge "sticky" blasts as it repairs itself. Our Onc warned me early on that we might still see blasts as the marrow recovers. He did not feel like 5% was something to be alarmed over . We all agree that it is just too early to tell because the marrow is still recovering and Samuel still has a lot of wound healing to do and I really suspect that this has a lot to do with what is going on in his body overall. The severity of the wound and infection was a very major thing.
