Cancer Warriors is doing a Family Fundraiser for us this month. Thank you so much! If you wish to donate to Samuel's medical costs, check out the info here.
11/12/07
Today's Labs
WBC 6.2k
ANC 62
Blasts 51%
HCT 24.7
PLT 65k
LDH 380
Phosphate 6.5
Things remain stable which is good I suppose. We could go on like this forever it appears. No concrete plans on the tube removal yet. I hoped to talk to the GI but did not yet. Last night was about the same as the past two, not terrible, not great. We all feel like crap with Samuel feeling the most crappy. Pray for rest, relief and restoration for us. It is incredibly difficult to do this and be so exhausted. We hope Samuel does not have to wait til the end of the week to have his tube removed and get relief.
11/11/07
Last night was pretty much the same as the night before. A decent stretch of sleep followed by two shorter ones. Yet, it is barely 6pm and I am dying to go back to bed. Samuel has had an okay day. Other than waiting forever for platelets to arrive, the hospital trip was uneventful. I thought we would see our Onc who is on call this weekend but apparently he slept in today.......until 2pm. He never rounded. So we never saw a CBC or got the IV med because apparently home health did not co-ordinate it with him yesterday which makes me wonder why I bothered to call them and not just talk to one person, but two people about getting this done. So Samuel is still on the oral. The oral overall is fine except it has to be taken on an empty stomach and then you fast for 15-30 minutes after. Samuel needs something in his tummy every two hours during the day and water does not cut it. The hope with the med is to turn off the HCL acid during the nighttime only so he digests properly in the day where feeding him every few hours is not a big deal. After last night, watching his tube dive into his tummy and then come back out, we cannot help but think that this issue is also some of the pain and problem which wakes him up at night. It just needs to go. And it looks so awful on the outside, it is just a nightmare that we want to wake up from.
Samuel did manage to poop out a ton of rank cancer poop while at the hospital today and we hope it was a dead cell pocket because there was so much of it. Hopefully it is not something like he is just making more cancer and killing more cancer again. Tomorrow will tell that story. I cannot wait until tomorrow because I want to get a plan of action for this tube removal.
Please continue the prayers for Samuel's healing and guidance for our caregivers. Samuel's back has been hurting off and on. He was running up and down the hall and tweaked it since his body is not used to being so active. It also seems to be a bigger issue when his tummy is hurting or he is tired which right now, seems like all the time. He is tired all the time and extremely moody which is understandable, and yet, we are talking about years of suffering some horrific painful wound after the next. We are so tired of watching him hurt. I am tired of him NOT being able to walk, play or enjoy his life much at all. He is living life off the couch currently. I watch Anna run and play like crazy and cannot put two and two together in my head on how one can have so many things go wrong while another is the picture of health. This is not the kind of existence I envisioned for him when he was in my tummy. All he has to look forward to is the next hospital trip. That is what I really want my five year old to look forward to, how about you? We look forward to better days.
11/10/07
Thank God, last night was better. We got an almost four hour stretch of sleep followed by a couple two hour stretches. Our GI said the oral med can take up to 72 hours to be fully effective so we hope for an even better night tonight. If the oral works well, I think we may just skip the IV for the sake of ease. As you know, I already think the world of our GI and this just confirms that feeling even more. I am feeling almost human today though still sluggish. Each night I have actually felt ill then gotten over it the next day. I cannot afford to get sick from exhaustion right now.
Samuel has had a nice day and even felt pretty good with some minor areas of tummy issues. We went to visit the farm today and he got to see the goats, rabbits, dogs, llamas and chickens. It was a nice escape from reality here. We did not leave with milk due to a technicality with the state but did leave with a bag of chicken feet which was a nice consolation. We are going to be making some extra gelatin rich stocks in the weeks to come. The owner was wonderful to us while we visited and we enjoyed the time we were there.
The visit made both Mark and I long to live our dream. A little farm like this one would just be glorious right now. These kind people wanted to gift us some milk goats but being on a tenth of an acre, we have nowhere to put them. The yard is a mudhole from rain already and no one can even enjoy the yard at this point. Once again, we are cooped up here for the winter. Another year has passed and we watch as our dreams dwindle in the distance. We cannot do anything while Samuel's health hangs in the balance. I told Mark that it is just easier to plan to live here forever than to plan to move away every year. Then the disappointment is minimal when things don't happen. And if things do happen, what a grand day that will be. I long for a place where my big kids can play outside in the dark on our own property with the dogs keeping watch. The really love hide and seek in the dark. I long for the day we can gather our own eggs and milk our own goats. We can have our garden to sustain us and Bud for entertainment. Wild rabbits are welcome visitors and all the kids think they want cats. Barn cats are fine. Indoor cats, never. Dare to dream.
Samuel's tube has decided to dive in and out of his body today. I moved it up on his body and just touching it caused horrible pain for him. Mark and I are certain now more than ever that this just needs to go. When our GI calls Monday, we are going to tell her to schedule it. It seems obvious that Samuel's body has made this "foreign object" the priority for his immune system right now and we just don't think we will gain a remission at this point without getting rid of it. The pain and trauma to this area is enormous and after four months of trying to heal it and save the tube, I think enough is enough. The Gi suggested putting in smaller and smaller foleys over the course of a week and letting the skin close around them but I think once she sees how ulcerated this is, she will agree that it should close quickly on it's own. It is not as if we are dealing with a completely healed tract. It is an obliterated tract. I talked to Samuel today about getting the tube out. He has been upset about losing it when we have suggested it previously but today was okay with getting it out and getting a nose tube for the interim. He understands he will be asleep for this and is not scared. It is nice that after all these years, he finally understands what sedation means and does not fear it. Our hope in removing it is that obviously it finally heals and that his body will then shift it's attention to the blasts which were almost nil until this ulceration happened.
We will go in for platelets tomorrow and I might ask for a CBC just to be assured that his good WBC is not plummeting again. We need this to stay up for healing purposes. He will also need to get platelets before the procedure and I am not sure if we will need to be admitted to Children's either before or after it is done. We are going to request that if this needs inpatient monitoring, we go back to Tacoma after just because it is easier for us to deal with the location, and MD's who are on board with our cancer treatment since cancer is in the picture, unlike last time around. And Mark was quick to point out that there has not been ONE time while inpatient in Tacoma that I had to fight with a doctor or other staff member for any reason. I haven't had to leave mad even once. That is saying something! We know our GI will understand what we need to do. And of course now that we both have made the firm decision to get rid of the tube, it cannot happen fast enough for me.
We need continued prayers for rest, restoration and healing. Praises that Samuel has enjoyed today and for the good people whom we have been lead to find in our own backyard. God is good.
11/9/07
We are still sleepless in Seattle, hence the short or lack of updates.
Today's Labs
WBC 9.2k
ANC 0
Blasts 49%
HCT 28.8
PLT 40k
LDH 343
Phosphate 6.6
It appears we are at a stalemate with labs and I know exactly why. Nothing here has changed. Samuel continues to burn all day and night and we are up all hours of the night. After seeing these numbers today, I called the Onc to see if he thought we should have Samuel's tummy scoped at this point. He thought this was a fine idea. I called my GI to see if we could see her vs. the ones in Tacoma. She suggested yet another drug to try and thought that this would really help in the grand scheme of things. We need the acid burn to stop so we can sleep, Samuel can sleep, not need to be fed during his sleep so he poops all night and breaks down his butt skin, leaving his liver no time to detox, letting the cancer do what it pleases. Did you get all that? I told her that if her rec does all that, then I will worship the ground she walks on. This is absolutely miserable. We were going to do it IV but cannot get it until it is administered in the hospital setting first. So we start oral tonight and will get IV Sunday when we go in for platelets which he seems to be consuming like there is no tomorrow. I think he may be bleeding on the inside as well. Our GI is going to call me Monday and if Samuel is not improved, we will go see her in Seattle where she is on service Tuesday through Friday and either have it looked at or ultimately the tube removed. Unlike the surgeons in Tacoma, she has NO problem removing it and allowing it to heal. This is coming on four months of this being an open sore and it is utterly ridiculous. So hopefully we can make some things happen in the next few days and Samuel can stop suffering.
We are going to visit the farm where the owners have graciously offered to gift us goat milk for Samuel. I have used store bought all week. Pasteurized milk is acidic, vs raw which is alkaline. Some nights he has had 16oz or more of this so between a third to a half of his tube diet is the wrong ph. It is no wonder we are not making headway on the blasts. Our Onc is anxious for us to begin the low dose chemos and we did discuss it today a little. We still feel like we need to wait to see if the new med will help with the misery before adding anything else to the pot. Thankfully in the blast area, things are stable which while not a bad thing, is not a great thing either as we need healing. Half of the cells migrating to Samuel's wound are dummies so you can imagine why thins is so awful and slow.
Tomorrow should be a fun day for Samuel. He gets to go see all the baby goats and the mommy who is going to help restore his tummy. He loves animals so I am certain this will make his day. Please pray for the new med to work and for rest for us all. At this point, I would take 3 solid hours of rest. The best I got last night was 2 in a row. Please pray for Samuel's body to rest and be restored in Jesus Name. And bless our GI who will call and Rx for Samuel based on my words, without seeing him. That is a rarity. Praise God because obviously the devil is throwing in everything he has to keep Samuel down. He knows he is defeated. In God we see only victory. May His victory be healing tonight. Amen.
11/7/07
Happy Birthday to my best friend and loving husband, Mark! Like we have said for the past three years, maybe next year's birthday will be better. I pray that next year finds us in a better place. My husband is my lifeline and this would be so much harder without him. He makes me a better person. He completes me. I cannot imagine life without him. Praise God for giving me exactly who I needed to share my life with.
As you read this, please say a special prayer for the family of Claire. I had the pleasure of "meeting" them through this battle and they lost her his week. She was a beautiful little girl who bared a slight resemblance to Anna. Please pray that God surround them with his presence and heal their hearts and the hearts of her siblings as well. I received this heartbreaking news today. This is a lovely family of God.
Last night was miserable again. I feel like utter crap so this will be short. Today's labs offer a lot of good indications that what we are doing for Samuel's liver is sending him in the right direction.
WBC 9.6k
ANC 96
Blasts 45%
HCT 30.6
PLT 28k before transfusion
LDH 311
Phosphate 6.6
Today, Samuel's GOOD WBC is 5.2k. So we are assured of why we see his wound healing. At this point the blasts are still suffering from tumor lysis and as long as his good WBC is going up, that is most important right now. He is also again making red cells. So obviously nourishing the liver also nourishes this cell line. Now if I could only figure out what nourishes the platelets. But I will say I was expecting them to be in the teens today so he actually lost less than anticipated. His marrow seems to kind of make some and then stop. It has certainly sputtered a bit over the last few weeks. But I am encouraged that we are on the right track. The cesium should increase his WBC. So seeing that is a good thing. Eventually, the good cells should attack the bad quicker and quicker. His LDH is not showing an enormous cancer load and his phosphate is indicative of tumor lysis. Our Onc drew some extra blood today to see if he has CD22 involvement because there is a note antibody treatment for this cell line. Last I checked though, his main involvement was on CD19. The other chemo IV drug he mentioned I let him know today will not be an option for Samuel. It is too closely related to Vincristine which I used to refer to as a cuss word. I think that if we are patient at this point and continue to see the WBC go up, the cesium will take over as it did before. As long as Samuel's wound is healing and he is free of infections, we can hold on any treatment that I would consider poison. Samuel got platelets today without event and I asked that we see labs on Friday to know how things will stack up for the weekend. I hope that these platelets were a big good batch and we can have the weekend free. It is much too difficult to take care of Samuel away from home and I want to get a bit more radical in his liver cleanse because obviously it is getting results. I can only do this at home, real close to the toilet and tub. Our Onc gave us a new RX for another product which might coat his tummy better for nighttime use. I had to use a LOT of milk last night and while it helps, I still want his body to rest and his gut to rest as well. So I will try it out tonight. If it doesn't work, then it will just be added to the shelf of medications we have and never use. That is actually what our Onc said, LOL. No point in using them if they do not work. And I told him that when it comes right down to it, if I can solve the problem with diet, I will do that first always.
So please pray for the family named above and that we can rest. Pray that Samuel can get pain relief. Pray that those good cells heal his tummy quickly so they can turn their attention to his cancer. Praise God for His continued direction and plan for Samuel's life. Much love.
11/6/07
I think we are seeing the small beginnings of this thing turning around. Last night while inspecting Samuel's stoma, Mark noted that there is new skin forming now and it definitely looks like it is slowly healing. Last night's sleep, however, was not so great. Samuel seems to sleep okay for the first part of the night but the burning pain becomes more urgent by 3am. He was up at midnight, 2am, 3am, 4:30am, 5:30am and we finally just got up at 6:30am and fed him a meal. Some of what got him up was not all due to pain however. It would seem our liver cleanse is taking effect based on what he pooped out over night. This was not the cancer poop at all but piles and piles of yellow mucus which I think is excess liver fat, bile and the toxins we are trying to rid his body of. If you are not expecting it, it is quite shocking. Samuel has pooped out some interesting things over the past years mainly because of gut dysfunction and this was nothing like any of that. Now it looks as if it has changed back to the cancer poop again.
He had some pain in his hip bone last night that literally grounded him. His right hip has hurt off and on and made it so he could not walk off and on in the past month. We think the remaining cancer must still be there and hope that the pain is it finally being cleaned out and destroyed. He had some a bit today but ibuprofen works wonders.
I called the clinic to let them know that we just need to have labs drawn there with the expectation that he will need platelets tomorrow. His wound is still oozing bloody globs as the skin dies off and flattens. Right now, it looks like a black hole with a red raised ring on the outside. So we will be in clinic early in the am and with all the things Samuel's body has gone through in the past 24 hours, I am certain our labs will be interesting to all.
He has had a pretty good day today. The highlight has been that he has had no burning pain inside his tummy. Either because he was fed a lot to help get the toxins out quickly, or it is better. He was able to take a three hour nap today which is a record for the last month or so. He woke up because he was poopy, and not because he was hurting. I was waiting for him to scram about his tummy, but he never did. This is the first time he made it through a nap without issue. Usually, he is up every hour desperate for relief. I pray that means he will have a better night. He has played a bit today but not as much as yesterday. It is obvious that his body is working hard healing. Feeding him the goat milk at night seems to actually be benefiting our daytime regimen for liver cleansing so I am happy about that since we do not have a choice there.
I received a link to a farm in the next town and they are going to provide us with raw goat's milk for Samuel. It was obvious upon contacting them that it all planned out by God. So we praise Him for this blessing. Thank you to Janet for helping me find them.
My hope is that Samuel rests better tonight with a lot less pain episodes. The difference between last night and his nap was like night and day and I pray that means he has a significant increase in the GOOD WBC's. I need to sleep. Someday, I would really like to sleep. Getting up with him once or twice, no biggie. That is pretty much the story of his life. But what has been going on here as of late is ridiculous and we pray it ends tonight. I thought today of the many many days we have went to clinic for blood products and thought it was the last time. And it wasn't. Many times I have thought we would wake up to a brand new day of positive change and we didn't. Yet, I will continue to think this way even though these things did not always happen as we hoped, or predicted. Why? Because with God anything is possible. One touch from God can change this situation instantly. He has done it so many times. So, I will continue to wait, pray and expect Him to work His miracles at any given moment. Because I know He can. Because I know He wants Samuel healed and restored. That is it. An RN who has taken care of Samuel in the past few months just signed the guestbook and left us the ultimate compliment. it is below.
Mark and Jen, I saw you with Samuel briefly today at the clinic. You were of course composed and ready to take on another day. Samuel was running right behind you, smiling and talkative, just as cheerful as ever. When I look at Samuel smile I feel like I am looking into the face of Jesus. Samuel has challenged my thinking and my faith. Your child is precious! I will continue to pray for his complete restoration and will not give up hope. We serve an amazing God! I will put my hope in Him and wait with a spirit of expectancy for God to bless Samuel Abundantly.Psalm 62:5-8;Psalm 121 Charity
If someone looks at Samuel IRL and feels like they are seeing Jesus in him, that is the ultimate compliment I could ever get about one of my children. The only person I have ever known on this earth who I could say the same thing about was my grandma, Delma. Good to know the apple did not fall far from the tree. We know that Jesus is in Samuel. Because of Jesus, Samuel's heart continues to beat, Samuel's body continues to heal and carry on, in spite of the odds. Jesus doesn't care about odds. Samuel doesn't care about odds. Neither do I. We will continue to praise God for HE alone is the answer we need.
11/5/07
Lots going on here. Samuel's stoma continues to bleed, ooze and is very painful. Both inside and out. But thank God, I have a mother on this earth with some common medical sense. She came over Saturday afternoon to look at Samuel's stoma and was able to see first hand his symptoms when his tummy starts to burn. She agrees that he acts like he has an ulcer. Delma, my grandma, used to have an ulcer so we spent some time thinking of all the things she did which helped it. None of the things Delma did were especially useful for Samuel but then she remembered an uncle or someone who used to drink milk. So we tried goats milk and it worked. Like magic! Samuel still wakes up in the night hurting but we can fix it quickly. Raw goats milk is said to be able to help heal ulcers and certainly the pasteurized version helps with the pain. So, we are sleeping better around here, praise God. I am still tired from several trips to Samuel's room to stop his tummy pain but at least we get a few hours off it rather than 10-15 minutes and it is at it again.
We got a glimpse yesterday of exactly what exhaustion does to the body's ability to cleanse itself and make good cells. Samuel got platelets yesterday without event and the MD who did not think we needed them asked for a CBC. It looked like this.
WBC 9.6k
ANC 188
Blasts 77%
HCT 31
PLT 17k
His good WBC was about 2.2k of the 9.6k. I can really see how sleep affects the body's ability to cope with disease in a big way. I already knew this and did not need to see it on paper though. And I swear everytime we go to the hospital and they draw labs, they look like crap. Both Saturday and Sunday, we did not see the "cancer poop" and it seemed obvious to us that he was just not purging at that point. It built up for a few days. Feeding him overnight to help stop the pain of his tummy is also shooting us in the foot because it is not allowing his liver uninterrupted time to purge these cells. Very very frustrating. I am certain our Onc probably saw this and thought he was finally "blasting off." Of course, we took immediate action to support his liver. His gut is doing well still but obviously his liver needed some help because it forgot to detox for two days. Last night we were able to feed him less milk during the night, he had only three instances, so that was good. He had some "cancer poop" last night and a lot today but mostly after labs were drawn this morning.
Today's Labs
WBC 5.8k
ANC 58
Blasts 47%
HCT 28.5
PLT 47k
LDH 275
Hard to believe we just got platelets but I guess it just reflects that he is bleeding. On the up side, his good WBC today is about 3.1k which is the best "good" count we have seen in awhile. We will take that one! His phosphate was normal today indicating to me that the blasts we lost between yesterday and today were already dead, just needing to be purged, as I suspected yesterday. He has had some good purging this afternoon as well and we are really working on freeing up his liver to clean these out. We are tired of playing around here. I am sure my Onc's head is spinning at the numbers between yesterday and today. I am just thankful to God for showing me the answer to yesterday's labs before we got them so the blow was lessened. I don't care who you are, when you see numbers double overnight, it does not make you happy. Thankfully, I don't sit and sulk, I get busy and Praise God, get results. We are still holding the small dose chemos at this point though I have added some other non-toxic cancer treatments. Samuel has been on full dose cesium for several days now and his ph continues to be 8.0 or above so it is just a matter of time until these blasts get the point. Starting from scratch on cesium, they figure it takes 28 days to see the cancer in remission. Hopefully, we can see this happen quicker than that. We are just thankful to see his good WBC continue to slowly go up.
Good cells definitely seem to be arriving to his wound and changing it. The swelling has gone down on the outside since it started bleeding and oozing. It looks deflated in places and is turning black and dying. I am really tired of skin dying on Samuel but at least this is on the outside, vs. the inside. Cultures have not grown anything and he continues to have no fevers so these are all good signs. Overall, Samuel has had a great day today. He has played with the kids running around most of the day. Much better than the last few. I can definitely see the improvement that sleep offers. Samuel continues to hang in there and as long as he does not hurt, he is happy. I wish good days translated into good nights but it just does not work that way for the time being. I dread nights because I am afraid to sleep, just waiting to be woke up by shrieking.
They will recheck labs Wednesday and I suspect he will need platelets. I am on the fence because I think they should probably recheck tomorrow and plan to get platelets Wednesday. I am sure if I had a little more sleep, I would be better able to put my foot down here. But it is nice having days away from labs and all the wonderment that goes along with them. Knowing we are going in the right direction today is all I need to know. It seemed like we had the best blast killing effort when we thought Samuel's liver was damaged and treated it accordingly. So we will go back to that diet with the exception of the milk for relief of his tummy and hope to stop chasing our tails.
Please pray for Samuel's good WBC to continue to come up and heal this wound. From the inside out would be grand because then we can sleep, and sleep means detox and heal. Sleep means I can function more like usual and less like a zombie. That would also be grand. Pray for Samuel's pain to go away and that his blasts follow suit. Praise God for a good day for Samuel today. He has really had a good day.
11/3/07
Today's Labs
WBC 5k
ANC 200
Blasts 46%
HCT 32.3
PLT 24k
Another sleepless night. I feel hung over. Samuel's stoma is actively bleeding off and on which is not making us happy at all. We hope it is just the neutrophils and new blood arriving to cleanse and heal this awful thing. We are going in for platelets tomorrow though I had to pull teeth to get the Onc on call to order them. He somehow thought they could just recheck Monday. We are losing 14k a day again. Do the math. Oh, yeah and he is bleeding. I think that makes us priority.
On the positive side. Samuel has an ANC! An ANC that G-CSF could not even stimulate. We take this as a sign we are on the right track. You don't make good neutrophils when your blasts are healthy and thriving so we are pleased about these even though the blasts are creeping up. Again, we know they are sick and dying. We will hold the MTX and 6MP a few more days. If Samuel's WBC continues to go up his wound will begin to heal and remission won't be such a MUST HAVE thing to get good cells to this area. Obviously remission is still high on the list but if he can get some good healthy WBC's here and the blasts continue to die, this would be a great scenario overall. Better than bottoming out the WBC again and suffering weeks longer. Praise God He knows what Samuel needs.
Please continue to pray for pain relief, good WBC's to infiltrate and take over, healing for Samuel's stoma and rest of us all. Life is just so awful right now. Rest will help Samuel heal more than anything else. Please Lord, grant us rest.
11/2/07
Things continue to be frustrating here. I cannot tell you how much I just want to sleep a full eight hours without being awakened by Samuel screaming in pain. The only person who wishes this more is Samuel. Last night was miserable. I am not certain we saw any benefit from the Zantac or if it only made things worse. Samuel ended up being hooked up to his food all night which meant he pooped all night. And his stomach still bothered him every hour. We did see less drainage overall but he was also propped up pretty well. It hasn't drained a lot today and I did give the Zantac this morning thinking it might need to build up but it just seems that now Samuel's low times are even worse and his food was even less digested even with supplementing the stomach acid back at meal times. I don't like that at all. So, I may try a night without it again and see if I am just imagining how horrid last night actually was.
Dressing changes on the stoma are incredibly painful now as well and I just cannot tell you how tired I am of Samuel screaming in pain. The stoma doesn't look much different other than darkening. Perhaps from getting more blood into his system or the silver or something else..... It does seem more sensitive. He used to be able to soak it in the tub but not anymore. The best we can hope for right now is that it does not get any worse. I tried several more food combos and different rate settings on the food pump while Samuel was sleeping and all I can seem to get is one hour sleep intervals regardless. It is frustrating beyond words that Samuel is unable to sleep because of this. Sleep is the time when your body heals and his needs this time to heal, not toss and turn and suffer. I don't like feeding him when he sleeps either and it looks like I have no other choice since food is the only thing that seems to help at this point. On the up side of this, he needs to put some weight back on anyway so the extra calories don't hurt him at all.
I have spent the better part of the day continuing to research ulcers vs heartburn and natural treatments for each. The teas are great and given that they are nourishment to his body and healing to his gut and liver make me very happy. If conventional meds could say the same, I would not be so opposed to them. I looked up the IV chemo last night that was possibly an option for Samuel. It is in the Vincristine family and I think that rules it out. Vincristine shut Samuel's gut down for three days in which he started screaming upon it's administration and did not stop for three days. So, I don't see this as a likely treatment option at this time. When the Onc and I visited yesterday, I told him the most frustrating thing for me is that he has drugs which would easily put Samuel into remission, possibly in a matter of days. None of them are options for Samuel which is fine because I am opposed to ruining his immune system anyway. They have done enough damage already.
Samuel got 7ml of cesium today, all this morning. We saw the typical diarrhea that has now become very familiar to us as dead cancer cells. It usually happens about two hours after he gets cesium. I gave two doses and the second round really got rid of some garbage. He ran out to tell the other kids that he was getting better because he was pooping out all the dead cancer. How nice. I asked that labs be done tomorrow since our Onc did not want to give Samuel platelets yesterday since they seem to be holding. I am not certain I trust the lab this week so wanted to be sure we don't run out over the weekend. If he needs them, then we can do that Sunday and Mark does not have to take another day off work. Hopefully we will see some good trending with the blasts going down. It is obvious that his WBC is still very low still. Please pray for the good WBC to go up so we might start to see healing. From the inside out would be a great thing at this point.
Please continue to pray that we can sleep some night soon. Like tonight. That would be good. Samuel needs the healing that sleep can offer. He reminds me of the day after his anoplasty was done and the pain management sucked. Once his pain was under control and he had a solid night of sleep, everything turned around. This is what I pray for. I know his body can turn things around when it gets good rest. Samuel IS healed in the Name of Jesus. Let it manifest in the natural. Praise God whose mercy endureth forever! He is our answer.
On a final note, Cancer Warriors is doing a Family Fundraiser for us this month. Thank you so much! If you wish to donate to Samuel's medical costs, check out the info here.
11/1/07
Labs Today
WBC 4.3k
ANC 43
Blasts 41%
HCT 22.9 before transfusion
PLT 51k
LDH 255
Phosphate 6.8
These look a lot more accurate than what was quoted yesterday. Samuel's good WBC actually came up. yesterday they said it was 3.4k and 51% blasts. So I will take this one. His good count is about 2.6 compared to yesterday's 1.7. Yesterday was a bad day. Last night sucked. I think I was up ten or more times in about 8 hours. Samuel is exhausted. He needs rest. His transfusion was quick and uneventful and I did not worry about it at all. Samuel's chem panel is looking great, finally! The only things showing up abnormal are the phosphate and LDH which is significant of tumor lysis. His liver functions are back to normal as of yesterday. All those fluids and teas trying to heal his gut fixed his liver. Got to love that apple cider vinegar. His CO2 is holding strong at 23 so we are very pleased about that as well. Overall we are happy with today's labs. His platelets were in the 50's yesterday as well so he is starting to hold them instead of losing 15k a day. His HCT is also starting to hold better. These are all really positive signs that we are again on the right track. The culture has not grown anything as well. His new stoma is not better but not worse either. We really need his good WBC to go up at this point, and obviously the blasts to go down. We need remission but would like to get there without this WBC bottoming out. A glimmer of hope was given to us today seeing this set of labs. We KNOW we have been stimulating blasts. We have eliminated the sources and the hope is that Samuel will be in remission in the next week or so. I had two conversations with my Onc today and both were really informative. I felt like we are working together as a team on this, finally. We both agree that Samuel has got to get to remission quickly. However we have to get there, we need to get there. I will be adding methotrexate and 6MP back to our regimen in the next days still in the miniscule amounts we started with several weeks ago. If by next week we are still chasing our tails, so to speak, on the blasts going up and down, we may add an IV chemo in a half or quarter dose to get us over the hump. I hope this will not have to come to pass but at this point, Samuel needs his marrow cleared of blasts so that good cells can recover and heal his wound before it becomes infected, or worse things like necrotic tissue start again. Our Onc feels that Samuel's leukemia is "sick". While perhaps obviously not all dead yet, it is severely crippled which is why it is not out of control. We are just on the bubble of kicking it to the curb and we are both frustrated that this hasn't happened yet. He also understands without a shadow of a doubt exactly how important diet is to remission and how important that anything we might do NOT interfere with Samuel's gut function. So, as I said, our conversations today left me feeling like we are on the same page both believing that remission IS possible and needs to occur NOW.
It occurred to me sometime while I wasn't sleeping today that Samuel's wound started from the inside out and probably looks similar in his stomach lining. He may not have other ulcerations. But like all the other times when his gut had some "injury" either from surgery or chemo caused, it made secretions. At Children's for every gut surgery, they gave antacids IV to stop the secretions. It occurred to me that this is what we need to do, especially at night. Nights are the worst. In fact, laying down flat is the worst. We propped the head of Samuel's mattress up last night and he did better. I gave him some baking soda in his tube and he did better. So I think we are on the right track. Our Onc thinks we are on the right track so wrote for him to get some Zantac at night and we hope this will help stop the acid and damage from getting worse. Pray it does. In theory, it seems like it will help. In the daytime, as long as his tummy is eating, he is fine. He needs to gain weight anyway so this works out well. The things we have done diet wise in the last two days have at least helped in the gut function overall and his poop is looking more like poop and less like the food it originally was again.
I had more to say but I am done. Too many sleepless nights. I pray tonight will be different. Much love.
10/31/07
I try to keep this journal upbeat and positive as much as I can and I really should not even bother to update tonight since I am feeling especially sarcastic. However, I am going off on a tangent here.
I am not going to bother to post Samuel's labs tonight because when I was told his HCT was 39 and his HGB was 13.5, it was obvious that the labs were no good. Samuel's HCT has never been 39 IN HIS LIFE. On a good non-cancer day, it was averaging 36-37. So the plan was to go get blood tomorrow because he is obviously very low, hence the no energy, feeling cold all the time, pasty white face. But no, we now get to go get labs drawn AGAIN tomorrow to prove his HCT is not 39 even though a blind person can tell you it isn't. So that adds an hour onto our day just waiting around for the numbers hoping the idiot reading them can get it right.
Oh, yes, it has been another WONDERFUL day here. Samuel had a slightly better night last night but that is not saying much since the night before it was horrid. His day was okay until the RN who came today had to access his port and that went over like a fart in church. He is so used to his Dad doing it that he came unglued and then she missed it the first time. Adding insult to injury. Topping that off, his tummy began hurting again and he just screamed in our faces. His nap was only slightly tormented. Everytime I think I have the problem under control it changes and it is frustrating. I have walked around here all day saying, "damn, damn, damn." It has been one of those days.
We told Samuel that his g-tube site is now a stoma and he has made peace with the mangled bunch of skin there. It oozed a ton last night. I asked about the cultures yesterday and guess what? No one ran them until today because the order got lost. So they have sat for days now probably rendering them useless. This is a good example of what happens if you do not follow up. Thankfully, I follow up. Obviously we pray nothing grows. Samuel remains fever free and for that we give praise.
I am so irritated that I have all these doctors and nurses and not a one of them has any ideas for me. What do they get paid the big bucks for anyway? Samuel continues to have miserable days and nights full of pain and agony and NO ONE has a clue how to help. As Mark says, I will figure it out well before they ever will. I called my ND today but never heard a word back from him either. We need to figure out what is going on with his gut making him and us all so miserable. When Samuel is happy, everyone is happy. When he is hurting, we all suffer with him.
Samuel's good WBC today is very very low. The lowest we have seen. I say good WBC because the blasts make up about half assuming that part of the labs are right. Another frustrating thing is that we are stimulating blasts still. So that is just keeping Samuel from remission. I know what part of our regimen is doing it and have eliminated it. But that also eliminates any good bacterial coverage he will have in his blood for the time being. Very very annoying. We just have to get him into remission asap because of this horrible wound. It is just so awful.
There was no Halloween here. My older kids were warned yesterday that we were not participating. Samuel cannot walk very far and it is too cold to go out and risk exposure. Not to mention that he would not be able to eat the candy anyway. I had a conversation with Kaysha today about the sacrifices we all have to make. This seemed harder for her apparently than Daniel. While they have missed out on a lot, they are certainly not lacking for fun days since every day we go to the hospital and they go to Mark's parents, it is a holiday for them. They get to do many fun things there that we don't do here. So I reminded her of this as she stated she never gets to do anything. Sometimes it does not matter what you do, it is never enough. Samuel got a dino costume this year and he wears it every day. That is Halloween for him. The big kids have Halloween every time they go to Mark's parents since that is where all the candy is. I just don't get the big fuss thrown here by my oldest child. Yes, I feel bad for them not getting to do something most of the country is doing tonight but these are the sacrifices you make for the greater good of the family. And as I told them, if Samuel dies, they will have plenty of time to do lots of fun things. Only he won't be here to do them with us. How fun with that be? Doesn't sound like much fun at all.
So tomorrow we are going to clinic to GET the blood which is on hold for Samuel. That is what I told the RN I talked to today. She looked at Monday's numbers and said "Oh, Monday he was 24, now he is 39, you are right, that doesn't make sense." Duh. I should shut up now.
Samuel has had a relatively good night with no real issues which has been just lovely. And of course, like the last few nights, I pray this means we have found the solution for his body to feel better rather than burn all night. I pray. Dressing his wound was the only really sad spot of the night for him. We are still trying different ideas out on the stoma to see if anything provides relief. Now I am using powdered colostrum with the silver to see if this gives any relief. It did not irritate the skin upon application. The stoma powder did for some reason. Oh, how I long for the days we lived in April and May. There was so little pain and screaming in the night back then. No gaping open wounds that are mangled beyond belief. No transfusions to worry about. No labs and bad news to ponder. No adrenaline rush filled days to suffer through. Yes, that was the life.
Tonight, I cry out to God to show us what we are missing. Heal Samuel. Restore Samuel. Restore our lives. Heal the wounds of the family. Every person has them in some form or another. We are tired. All of us are.
10/30/07
Another frustrating night, and a mostly frustrating day. I am starting to think that the ulcerations we are seeing on the outside of Samuel's body are most likely on the inside as well. The Surgeon suggested we stop supplementing stomach acid, so I tried it for a few feedings. Big mistake. He absolutely has to have it or his food just sits in his stomach for hours. The food was so stagnate that I had to draw it out from the tube and then put new in to get his gut going again. Frustrating! Then it just seems like his tummy burns all night waking him up hourly screaming. His poop burns as well. What is the solution here? I have been reading, experimenting and asking for advice all day on this. I talked to my GI's office and their best thought was that he probably has BOTH problems due to low counts: low stomach acid AND some ulcerations in his stomach lining. Perfect, ugh! I put him on a slow apple cider vinegar water drip this afternoon so he could nap and it seemed to work well in stopping the burn. My GI's office thought we were on the right track to helping Samuel feel better but had no real solutions to offer other than trial and error. He seems to be doing better tonight with some teas and supplementation at different intervals and I hope that we all have a better night tonight. I switched him to a thermally cooling diet just in case of ulcerations and he seemed to be a lot more comfortable. But, I am getting to the point at night where I am afraid to fall asleep because I know he is just going to wake me up any second screaming bloody murder and it is harder to be woke from just falling asleep than just laying there waiting for it.
I was able to get more cesium into him today. Also, I added back MSM. He was walking up in the hall today and simply fell down. Then screamed that his hip bone hurt and decided he could not walk. I am hoping that this means the cesium FOUND the remaining cluster of leukemia. Not that the leukemia decided to have a party. I rubbed DMSO into the area and he got relief quickly. He has gotten the recommended dosage of all these things today which is the first time in weeks. After all the tumor lysing episodes, we wanted to start slow but at this point we are going for broke. We need him back in remission quickly in order to get this wound to heal. Other than the leg thing, he has been in good spirits all day as long as his tummy wasn't hurting. He has had a great night and I hope that bodes well for sleep. The morning and naptime, however, were not so good. The wound itself does not seem to bother him much unless you accidentally bump the tube and of course dressing changes. We are treating this as we did his ostomy stoma when it broke down. He remembered and welcomed his stoma powder. I think he still misses that stoma! We don't. And the dressing has stayed on well today. My Mom said that the granulated tissue, aka the mangled stoma, will slough off as it heals as well. The tissue will basically die again. That is great....... It will be a day of rejoicing when this finally is healed, I will tell you that.
We will see labs again tomorrow and are planning on Samuel getting blood again on Thursday. Samuel getting blood is another proven cancer treatment. Blasts always decrease in a major way when he gets blood so we look forward to that. Please keep the prayers going for us. Slow and steady wins the race. Praise God, He IS the answer.
10/29/07
Today's Labs
WBC 3.7k
ANC 0
Blasts 34%
HCT 24.7
PLT 32k
LDH 301
Everything we gained in the HCT and PLT department from G-CSF was lost today. But the blasts are also leaving so we are happy about that. Samuel's LDH from Saturday was 444. Did not see Sunday's but I am certain it would have been higher. So these are encouraging numbers and trending. Glad I asked for labs when we arrived or it would have been a very short week for Samuel as he ran out of platelets. We had him transfused after the sedation. But because they were low, we were not able to remove the tube for a look inside.
I was able to stay for the procedure which is always a treat because usually sedations or operations are the only times I don't know exactly what is going on. The Surgeon came to talk a bit about the issue before we went back and I told her I was thinking it had to be the stomach acid that did this coupled with low counts. We talked about the necrotic flesh and the wound this had been previously and she said that that new tissue would be even more sensitive than the old. She was able to remove the "wheel" which has blocked us from really aggressively treating this. When this tube was replaced a bit over a month ago, they left the wheel in the way and I was not happy since it is not easily moveable. Our GI had positioned it to the side so we could see the entire wound. The doctors which put in the new tube thought that it's position was what caused the cellulitis. Yes, I am sure that was it........ So, now it is moved and the stoma for the tube now looks like a mangled stoma from an ileostomy. I swear if I did not know the difference, I would say it was that. The blister is not a blister anymore but granulated flesh. She was able to culture the stoma but again, we take whatever grows with a grain of salt. She did say she has seen something like this before and it was pseudomonas. The patient also had severe high fevers and of course no WBC. Samuel does not have fevers at this point and we pray to keep it that way. So, at this point, everyone agrees that it is just very tender skin, no WBC and stomach contents burning it. We have some other new things to try to keep this dry and free of more irritation. All in all, I was pleased with the procedure and it is always nice to be included.
I had another type and cross done for blood which he will probably get Thursday. I asked that labs be done on Wednesday so we know what is going on with the numbers. We hope to get him back up to full dose cesium in the next few days. His gut is being funny again though and I really believe it is low counts just messing up all my hard work. So, I need prayer that these gut issues will resolve quickly and that his tummy start working again.
It has been a long day at the hospital and I am tired. Looking forward to a day home tomorrow with no visitors. Samuel was in good spirits today in spite of the flesh wound he is carrying around. That always helps make a bad situation better when he is feeling decent. He came home and has been dancing to the Wiggles off and on. But we all need to go to bed. Please keep praying that God protect Samuel and lead us where we need to go quickly.
10/28/07
Today's Labs, obviously, we are done with G-CSF
WBC 4.2k
ANC 84
Blasts 44%
HCT 27
PLT 58K
Well, the good news is that somehow Samuel's HCT went up and his PLT did not take a nose dive. WE were thinking he would need PLT before the procedure tomorrow but based on these numbers, we are good to go.
Samuel had his best night last night in most likely the last five days if not longer. I lost track. But he slept pretty well and I did too. We all woke up feeling rested and I realized just how awful I have felt the last several days because I felt decent today. It was a nice change and I hope he sleeps well tonight too. All in all, he has had a much better day today than the last two.
We really examined the stoma site last night and today and it looks like the blister pictured above has pooped and is draining well. But now he has developed a new one on the other side. Mark was able to reposition the tube last night so that it enters his body a little straighter and that seems to have helped with the pain in the area a lot. So I think that relief helped him sleep better as well. The drainage still looks watery with some blood, mainly new blood. However, we are now uncertain as to if it is draining around the stoma. The silver cream has a slight odor which we realized last night is very similar to the odor of the drainage, only magnified. So we think that it has penetrated the tissues and that it is actually what we are smelling. The areas being treated are definitely turning silver gray. Plus I am dumping silver solution directly into the stoma area hoping some gets into it. The blistering still looks like skin breakdown due to low counts and we are still hoping that this is "just" that and not something brewing under the surface. Tomorrow, at 1:30pm the surgeon will examine this under sedation and make a decision about the tube. She did not want to do anything with it if he was neutropenic, which he still is, but it needs to be taken out and at least looked at at this point.
The Onc and I have discussed treatment plans over the weekend if Samuel should NEED abx again. We are really hoping to avoid that at all costs since it worked so well, NOT, the last time around. If he needs abx, he cannot do cesium treatment, so we will switch back to bicarb at the strength suggested by the MD in Rome for the duration. At this point, we NEED to get him into remission and get his marrow healed enough to bring his WBC up and heal this. That is my first priority at this point. Mark and I wonder still, if the marrow is just purging dead blasts but is not healed enough yet to make good neutrophils. Especially given it CAN make red cells. The Onc was floored to see his HCT go up, we were elated. Hope it rises again tomorrow. Regardless of the condition of the blasts, Samuel's marrow is definitely still in shock. The blasts could have taken over this past two weeks as we were not treating cancer at all and they did not. So our hope is that we haven't lost much ground in that respect with the G-CSF. We will visit the Onc before heading over to the hospital for sedation and have another set of labs done just to see where things are.
I woke up this morning after spending the night praying over Samuel, with Samuel and asking God what we have NOT done in order to get Samuel healed. As my Mom said last night, we have honored the Word, we pray the Word over Samuel, we stand in faith, we believe the Word works and that God will honor our faith. What is going on here? The Lord granted my prayers for rest for us all and I woke up with this specific thought. God has NOT failed us. In the 3.5 years we have been doing this now, God has never failed us. Samuel is alive and is being restored. He has survived things he shouldn't have and overcome odds that were unfathomable. The timing might not have been what WE wanted but nevertheless, God did not fail. God is not in the business of failure. Man can do that all on his own. Things certainly "look" impossible for Samuel right now. And yet, that is where God thrives because with Him, nothing is impossible. Failure is NOT an option I will consider. So as I got off the phone with my Onc today, I told him that in the 3.5 years we have been dealing with Samuel's medical issues, God has never failed us. We do not intend to fail. As long as Samuel continues to live, breathe and fight, we will also. No weapon formed against us shall prosper. We know God can turn this all around in an instant. He does it every time. So we look to Him who reminds us today that HE has not failed us. He does not fail.
God knows what we need. We need specific prayers that this issue with Samuel's G-tube site NOT be an infection. We can then deal with the cancer 100% and do wound care for the area praying that marrow recovery is not far off. We need prayers for marrow recovery and healing. Strength to endure as many days as it takes for this to come to pass. Thank you for ALL the prayer covering. Today has been a good day here regardless of the labs. Much love.
10/27/07
Today's Labs, NOT what we hoped for.
WBC 3k
ANC 30
Blasts 29%
PLT 65k
HCT 24-25, Onc could not remember which
HGB 8.6
Well we stimulated blasts. Not good. We are trying one more dose tonight just to be certain the the good neuts did not enter his tummy tissues instead of the blood. But if there are more tomorrow, then G-CSF is not going to be an option for Samuel. His blister hasn't changed but it we saw some dark drainage from around the stoma tonight which has an odor of "old and dead" and also of the silver cream as well. Another NOT good sign. Again, last night was pretty miserable for Samuel as well. If tomorrow is not better, we will get a CT done through the ER. Then the sedated procedure Monday. We will try to get a culture on the drainage tomorrow as well so we might know what we are dealing with. The good news is that Samuel won't need blood tomorrow as we expected. Somehow that was a surprise and we hope that it is a good sign that this is NOT progressing in a bad infected type way. I ask that you pray for Samuel's body to make the proper cells to deal with his tummy and that his body will have comfort and healing from God RIGHT NOW. We have already done this! We have already lived through this situation. I don't care to relive it again. It is time for a change. We need good leukemia control and good infection control. Only Jesus can do that.
10/26/07
We are home after spending another entire day at the hospital. Last night's sleep was torture as were the nights which preceded it so I continue to feel like crap, adding insult to the frustration I already feel. Yesterday's labs show 10% blasts still and NO ANC so whomever called Samuel's ANC at 400 should be fired. It now looks like his WBC will again bottom out just as it did the first time around on cesium. It had to get down to about 1.1k to finally eliminate the blasts.
Today, while we were getting platelets, G-CSF was delivered. So, we are starting that tonight in the hopes that it will help in the amazing way it helped in August. The hope is that the blasts which remain are dead and we don't stimulate a new herd to deal with. Our Onc figured that the last time we used G-CSF to stimulate Samuel's WBC, he obviously still had blasts hiding and it did not resurrect them then so hopefully, the same will hold true now. The bottom line is that we just don't have any other choice at this point. So, we will see labs each day over the weekend. I asked for a type and cross to be done today so Samuel can get blood again, probably Sunday. Planning on another wash of a weekend with all these things in the mix now. The surgeon came through with the Onc today and no one feels like we can remove the tube at this point so we are stuck with it. They mentioned bringing him inpatient for IV abx again, which I vetoed at this point. They are not certain whether this is infected, or just a reaction from a mechanical issue with the tube. So, they planned a sedation slot on Monday so she can take it out, explore the wound, possibly open the blister and culture it, and perhaps reinsert a Mic-Key G. She mentioned that the blister might have formed from stomach acid leaking out. This struck a chord with me as we are now supplementing stomach acid and with his WBC being very low, it could certainly break the skin down. If this is the cause then in the grand scheme of things, it is not that big a deal as long as it does not get infected. When Samuel had his ostomy stoma, everytime his WBC was low, that skin was a nightmare to deal with due to breakdown. So, this might actually be the culprit. With the way the tube he has now goes in, it is not entering his tummy straight and certainly could leak especially if it gets bumped. It sticks out an inch or two from his body so it is easy to bump and thump. I suggested getting a Mic-Key which is what we used to have, back into it so that it enters his body straight and seals tight. Our old Mic-Key did not leak and up to the cellulitis, everyone always commented on how great his stoma looked because it was never irritated. So, that might be an option come Monday if the G-CSF works it's magic and this heals enough. Please God, let this be the answer. Give him back his immune system. This is absolutely ridiculous. Mark is not happy given all the work he is missing now so we pray that the result is not him getting fired. Stress is around every corner it seems. Please continue to pray that Samuel's immune system comes back to heal this and kill their remaining leukemia for good. That IS God's will. Healing. Period. I will accept nothing less at this point.
10/25/07
Labs today, what I have received so far.
WBC 2.3k
PLT 38k
HCT 25.7
LDH 219
CO2 20
Well these don't look so great but wait.......my Onc called me after seeing the above pic of Samuel's tummy and said that the lab called Samuel's ANC around 400. I do not have a solid differential so I don't want to jinx it by saying it is true, but if it IS true, then I will assume there are no blasts. Usually, they do not call an ANC for Samuel because there are so few cells. When I am in clinic, they usually call and say they did not see any neutrophils and later a few percent show up in the hand count. So we are optimistic about that. The LDH does not show any abnormal or cancer activity so that is a good sign. These labs look like a marrow which is in shock similar to the way they did when Samuel went into remission in August. I will know more tomorrow about what is up with that. His liver functions are slowly approaching normal but certainly are not alarming at this point at all.
Apparently, that bag of platelets, the huge bag, was a big bag of nothing. We have to go back tomorrow for platelets again. I walked out and told RN Susan that if I got labs back today showing his PLT at 30k, I was not going to be happy. Well, we are not happy but what do you do? It is not surprising his HCT has dropped further because of it.
Our Onc looked at the tummy pic I posted above and he thinks that it is not an infection at all. Not cellulitis but rather a blister. That is what we have thought for the last day or so as well. It opened up, drained, then sealed and filled again. Mark lanced it tonight as it was growing big and painful again. Tomorrow we will have our Onc and a Surgeon come to look and decide if we just need to remove the tube period and allow this to heal. This is driving me crazy. It is inhumane to me to watch Samuel live without an immune system. It is inhumane to me for him to have a wound this bad which cannot heal because of it. It is inhumane all that Samuel has had to live through in order to just live and he still lives with torment. It is inhumane. I know God can stop this cycle. Why should we wait for tomorrow or the day after? I am tired of this and ask God to end this viciousness. This is not how we are supposed to spend our time here. I rebuke this evil cycle right now in the Name of Jesus.
Samuel's ph actually went below 8.0 for the first time in weeks. We have been able to restart cesium. VERY slow and small doses to be certain that there is no more tumor lysing syndrome. Today, however, I was able to give him many cancer treatments with no ill effects and I wondered while waiting for labs if there was just no more for these things to kill. I wondered if the blasts were gone. Of course we are left in suspense for yet another night. Our Onc is still open to G-CSF if we want to try that once again and see if it will boost Samuel's WBC enough to heal this spot without removing the tube. We have been dealing with this for now for 2.5 months and it seems if we have a window of opportunity, aka, remission, we should do whatever it takes to heal this once and for all. If the tube is removed, we will then be back to an NG and Samuel will probably be traumatized over the loss of his G-tube. Like his Stoma, he will miss it. I am certain he won't miss it hurting him.
Today has been a little better for me. I think I got four hours sleep last night. That is about as long as Samuel slept straight. He was miserable with this tube all night basically and the Neurontin only made his misery drunken. So forget that. I at least like to understand what he is crying about. His nap was actually better. He got a solid two hours in before waking and there was no miserable tossing and turning. That was a relief. He has had another great day. As you see from the other pic I posted, he is quite happy and has been playing with the other kids all day. I don't see any "toxic burden" on his body and that has eased my soul a little. It is just extremely hard to take everything in on some days. It hurts my soul to know how much suffering Samuel has endured. It hurts my soul knowing how much of life I have not even asked if my other children would mind if we put on hold. It hurts my soul to see my youngest child act out just to get the attention she has been denied for her entire life. It hurts my soul to think of the days, weeks, months, I have literally ignored the needs of my other children in order to save one. It is the epitome of unfair. It hurts my soul to not know how many more endless days and nights this will go on. Reality can be so rewarding and yet so devastating. Saying all that, I pray that these are the dark days before the dawn of our promised Restoration. I pray that these are the ending most painful labor pains before the birth of something great. We need a breakthrough. For tonight, I would just like Samuel to sleep without torment. I would like to NOT be woke up by Samuel screaming in pain. I would like to get a good report from the hospital in the morning. It is really not much to ask in the grand scheme of things is it?
I am not without praises tonight because today it does look as if we have good leukemia control and good infection control. For that I give praise to God. Praise that in spite of it all, Samuel is still smiling which is more than I can say for myself. We all smile and laugh and if you know us IRL, you know that we are always joking around. But on the inside, my heart is wounded from the war we fight. A person can only watch so much suffering and I hit the limit years ago. We thank you for your continued prayers and praises! God IS the answer. Of that, I am certain. There is only joy in that reality. We KNOW He can change our lives in an instant. We pray it is near.
10/24/07
The good news is that Samuel's boil opened up last night and has been draining ever since. Ode to the power of silver. We found his red blood cells in there hiding and they have been dripping out with the drainage all day. It seems to have slowed down tonight but we shall see what it does overnight. Samuel has had another great day. He has been in good spirits when he has been awake. Sleep, however, has become a different story. Over the past few months, he has started having nightmares regularly. Topping that off, his body is very aware of pain at night and he has zero tolerance for it. Last night, he was up just about every hour screaming bloody murder. Either a nightmare, a pain here or there, or he is too hot, too sweaty, his bed is wet, he pooped his pants, you name it, he did it. Somehow all that cat napping did not phase his activities today but I feel like I have been run over by a truck. I am literally counting the minutes to bedtime. The night before last was not much better. His naps have been tormented as well. It is a little hard for a body to recover and heal when it does not rest so tonight I think I will get out that Neurontin and see if that doesn't help a little. It was great back in December for surgical wound pain and sleep as well so I am hoping it will help a little. Mainly, his tube is still hurting and as he tosses and turns from his "nightmares" he bumps it and wakes up screaming.
I swear that some days here are a living nightmare. I try not to think too far into the future or too far into the past, counting all the months, and years of days and nights like these. How many more? How many more days and nights of suffering to get to relief? I just want to pick us all up out of this nightmare but I cannot do anything but live through it. I spend every waking hour, sometimes dreaming hours, trying to save Samuel's life and then hear on the news of how other mothers are trying to kill their kids with their neglect or stupid choices. I am just shaking my head. We has spent the last 3.5 years trying to save Samuel and give him quality of life and yet there are mothers out there who's only wish is to live their own selfish lives. Anybody need a wake up call? Come spend a day in my life and I guarantee you that you will go home thankful that your kids do not hurt, make their own blood, don't need to be fed through an infected tube site to save their life, and sleep peacefully when night falls. Days without good quality sleep make this life so much more difficult. I just cannot wait to crawl in bed and do this all over again tomorrow.
Our Onc is fine with us doing G-CSF again, however, after seeing this boil open up and drain, we will wait until tomorrow's labs to decide if we want to proceed. If there is improvement in the counts, then we just may hold off. Right now, Samuel appears to have relief but we sure don't want to see this escalate into something more. I know his body is tired. I actually feel as if his body is stealing energy from mine because he is just feeling great today and I feel horrible. Seems as if it should be the other way around. However, I am thankful for him to feel good because it makes the days so much easier to get through. We all just want to see him heal. All I want for Christmas is to see this wound finally heal! I want us to be able to move on with our lives. Is that too much to ask?
God, I know you read this, grant us all sleep tonight and good news tomorrow. Light our path and please touch Samuel's body and heal it instantly. I know you can do it. I won't even be surprised if we wake to healing. How many day have we thought we could not go on and then woke to a new day with unbelievable healing? Many! Tonight would be a good night for your healing touch because I am exhausted. Amen!
10/23/07
Today's Labs
WBC 2.8k
ANC 28
Blasts 10%
HCT 29.3
PLT 17k before transfusion
Either we have good leukemia control or good infection control, or neither or both. It is becoming hard to tell. As a side note, Samuel was in great spirits today despite his tummy tube site bugging him all night. Everyone commented on how good he looked and felt. Another positive is that Samuel seems to have gotten a double bag of platelets. Mark asked for the Costco bag and it ended up being 400mls. So hopefully, he got enough to get to next week. That would be grand!
Several RN's and our former Onc looked at the boil/abscess and all agreed that it is not ripe yet. It might have drained a few days ago but it has closed up and is looking like a growing blood blister. Of course, being right next to the tube, it is painful. The Onc offered abx, which we vetoed. Then topical abx such as bactroban, which I vetoed. I asked him about treating this with Silver. I have silver and the support for Cesium has told me to use it several times before now. I have hesitated because of the skin discoloration it will cause especially since this area has already become necrotic. However, it seems like the last best option at this point. The Onc actually thought it would be a good idea and wrote for some silver cream and then suggested we try to get the silver solution inside the stoma if possible. So, we are hopeful that this will get to the root of the issue as well as hope that this abscess will come to a head and drain. It is now obvious to us based on labs today where Samuel's WBC's are again as well as what is eating his red cells again. This is a vicious cycle I want to end. I just sent our regular Onc a note about exploring G-CSF again as well. Blasts are down enough that I am hopeful this will be a good option to not only get to the root of whatever is brewing in Samuel's tummy tissues again, but to also help clear the rest of the blasts and kick start his other cell lines again. Did I say this is frustrating? No one really thought that what is going on in his tummy is cellulitis again because of the way it is acting, but with his immune system being now very compromised, we do not want to revisit this. Please pray for us and our Onc to get God's wisdom in how to proceed. I am tired of getting one or the other under control. We want to kill both problems, now once and for all. Nothing is impossible for those who believe in the Lord!!!!!!!!!
10/22/07
Today's Labs
WBC 4k
ANC 40
Blasts 4%
HCT 31.3
PLT 31k
LDH 219
CO2 22
I received another happy call from clinic today. These labs do look better. Samuel's liver functions have almost returned to normal and his kidney/bladder functions are normal once again. His LDH is also in the normal range. However, he is still not making platelets and his WBC seems to be missing something, like another 50% being neutrophils. Everyone is in agreement that those blasts are dead, just waiting for some monos to clean them up at this point. He has 1% neutrophils and 95% lymphs which looks really funny on a lab sheet. We poultice his little boil or abscess and it did open and drain a little pus again. It is not nearly as sore today. I have received many differing opinions as to whether this boil is a good thing or a bad thing but we are all wondering if his neutrophils are not here in this wound once again. It is so utterly annoying! Thankfully, he has no fevers, and the pain on the wound has lessened a lot. We will poultice it again tonight only now with baking soda added. We are also hoping that his HCT fell because of low platelets and lots of bumping and thumping around due to energy and playfulness more than they are all going toward an infection. Tomorrow we will go get platelets once again and have our former, other Onc look at the site and decide if another CT is in order. All we want to do is to put this behind us. Right now, I don't feel like what we are seeing is a bad thing because I have felt all along like there was something still left inside it that needed to drain. I don't know, like a cancer cluster?
We are still NOT treating cancer at this point, but just letting the chips fall where they may. The MD in Rome did send me a note today suggesting we do another course of the bicarb only at his dosing and then asked me if Samuel has a fungal abscess somewhere. Hmm. Perfect timing, eh? This is why I am adding topical baking soda to the poultice. We will see what tomorrow has in store as far as letting an MD look at it and seeing another scan. They may also culture it if it is still draining but I am doubting we will do abx again unless this turns ugly so pray it does not.
On a good note, Samuel's gut is doing great! He had all beautiful poop today and not a one hurt him or was not formed. It has taken a good week to get here but for the last two days in a row, he has only pooped 5 times a day on average and made it all night last night without pooping at all. Absolutely wonderful! So, at this point, we are just concentrating on diet and enriching his body with the nutrients it has been depleted of. This makes me very happy because it is doing what we have done all along. Nourishing his body to the point where it is so saturated in nutrients that cancer cannot live. Putting in only good things and expecting a good result. His butt looks really good today and I am certain that the lining of his gut is healthy on the inside as well given what we are seeing come through it. For that, I am thankful! Now if his wound and blood would recover, things would be just dandy.
Praises for a nice day with only a few minor bumps to deal with. Please pray for Samuel's body to recover quickly in all the areas which need God's mighty hand NOW. Amen.
10/21/07
Kaysha had a nice birthday and received several nice gifts. Today, she had a skating party with her friends that Mark's Mom did for her. She had a busy weekend and seems happy about it overall. She is 11 this year. Time flies when you are having fun. While she has her annoying moments, she is a wonderful daughter who helps me out so much by taking care of the babies and entertaining them. She is like a second mother to Anna, which is great because they are exactly the same. Daniel and Samuel are worlds apart. Not many similarities there!
Samuel has had a nice weekend though we continue to have ups and downs. Moments that make you go hmm. For the past two days, he has suddenly had muscular pain again. I think I have figured out what food caused it, apparently too strongly alkaline for him yet. I am still amazed that we are seeing the effects of the bicarb, but we are. He seems to be fine on cooked foods, a little raw veggie juice, but any cultured raw grain products seem to cause the muscle pains. I don't know why because in our minds, the blasts are gone, so how this is upsetting the balance, we have yet to find out. However, he has been port free since Friday and of course that is when we starting seeing the issue. Today, I omitted that from his diet and we have had no issues. His saliva ph has yet to drop below 8.0. I need to get test strips that go higher because he is probably 10.0 and we don't know it. At any rate, we know cancer cannot live in the high ph environment that his body currently has and we continue to hold all cancer treatments.
Another annoyance has reared it's ugly head. It appears that the area of skin directly around his g-tube may open up again. It looks like it might have formed a boil to the left. It started looking funny on this side last weekend and I just assumed that his port line was irritating it by dangling there. We try to keep it taped out of the way but it sometimes falls down and tries to wrap around this area. Well, over the last two days, it seems to be growing and today the skin has peeled back exposing a new layer under it and that layer looks like it may come to a head. I am poulticing it again tonight to see if we can draw it out. Hopefully, it will be a little less sore then. Since this area has never healed, obviously because of his messed up blood, we are hoping and praying that this is the result of more good WBC's coming to this area to finally deal with it and heal it. Releasing whatever is left inside is a good thing. However, if we see labs with evidence that the blasts are not dead with no ANC recovery, then this will be an even bigger area of concern. As Mark says, no one will rest easily until this area is healed properly and his old style tube is back in place. His tube is tender if you bump it on the outside but his tummy and gut are functioning just fine. At this point, we need prayers for WBC and ANC recovery. Usually ANC recovers about four days after PLT recovery and while we do not see evidence of low PLT, we haven't seen them recover yet either.
So, we will know more tomorrow when we see labs. I don't know what is harder; waiting for results when you know they are going to suck, or waiting for results when you are thinking they are going to be good. Lab days are often difficult. Hard to be patient. Hard to imagine life and death is on a piece of paper and yet they guide us, Mark and I, on what to do next.
Samuel still looks great. Day 7 of making his own red cells. Day 7 of being fed properly and in the last few days, his gut has really righted itself and he is back to pooping five times a day on average rather than 10 or more. This is wonderful especially at night since it means less trips for him, and me. He has had a hard time napping the last few days and what he needs more than anything else is rest. He has spent the majority of this day running around playing with Anna. His energy is increasing. He has lost so much weight and spent so much time laying around miserable in the last few months that he has lost a great deal of muscle tone. So he tires easily. And it is frustrating to him. But we all know he has overcome much worse. Even looking at the condition of his tummy, Mark and I note all the surgeries he has recovered from and we know that if his good cells and marrow actually have time to recover from cancer, that this will heal just as well as everything else. It is just so hard to be patient! Whatever scarring will remain from this wound will be a lifetime reminder of his relapse. Some days I don't see why everything his body fights for has to be bad enough to leave scars behind as a reminder of the tragedy. As if my elephant brain needs a physical reminder.
Praise God for our angels on earth and in the heavens who watch over, protect, guide, and reach out to help. We could not do this without them and you all. Much love.
10/19/07
Things are exciting here, in a good way! If you thought Samuel looked good a few days ago, look at the pic I just snapped. He is a pink man again! Today is about day five of him making his own red cells. It is a sight to behold and praise about, that is for certain!
Samuel's transfusion went smoothly and we actually came home. I say that since there were two this month in which we did not come home and expected to. Thanks to the power of nettles, he has not had a transfusion reaction. We did a good thing last spring before we even know what we would use them for. During the transfusion our Onc came to visit. I haven't seen him a a couple weeks. His first question was, "So, what do you think happened to the blasts?" And my response, "We nuked them." He says Samuel continues to confound him, but this is in a GOOD way. We talked about the sodium bicarb treatment for cancer and I figure that between this and the cesium and multiple other treatments we used at the same time, we really did a number on his marrow. I looked up the MD who started the sodium bicarb treatment for cancer who is from Rome and e-mailed him what we have done to see what he thinks we should do next. The protocol for leukemia is 6 days on, 6 days off for four cycles, take 2-3 weeks off and repeat. There is no need for other cancer treatment during this time, uh, obviously, we found that out. Everyone is of the opinion that Samuel is in remission. With how fast the blasts are dropping off and the red cell recovery, the Onc is very impressed! We have seen the blast percentage reduce at a rate comparable to chemo without the toxic side effects. That is saying a lot and has our Onc very interested in seeing the info and site of the MD in Rome. Mark and I are hoping this will give us the durable remission we were hoping for the first time around. The Onc and I agree that the blasts showing up in the blood are dead and both expect to see 0 come Monday with all other lab values normalized. Did I say exciting? Things are exciting! We are still holding all cancer treatments at this time however until we see Monday's values. Our Onc is of course open to us doing another course of the bicarb if we wish to follow the protocol for leukemia. We haven't decided yet but definitely will keep this as an option.
The theory of alternative cancer treatments is to treat the cancer from various angles adding as many treatments which have good success rates together as tolerated. Similar to the concept of chemo, using multiple agents together, only in alternative treatments, using NON toxic treatments, not poison. So, the bicarb treats the fungal aspect of cancer. Documentation is good for leukemia being fungal. But because leukemia is a liquid cancer, vs. a tumor, multiple courses of treatment are advised. Sodium bicarb is the only treatment in which a fungus cannot survive. We give it credit for finishing off Samuel's tummy infection as well. Samuel got about 15 days of sodium bicarb daily so we have changed the protocol a bit but his dosage overall was less, and it was combined with other treatments so we will take a break from this, for now. Bicarb does not pass through the blood brain barrier so this is a draw back of this treatment for leukemia. However, if there is a microbe which caused the leukemia for Samuel, say, in that cellulitis, and we killed it, the theory is then that the leukemia will also resolve. The Cesium/DMSO protocol does pass directly into the cancer cells and will also cross the blood brain barrier which makes it the #1 alternative treatment for leukemia. So, we would like to continue this protocol. And of course, diet is key and because Samuel's gut is perfectly fine now, we can resume his cancer diet. Building the immune system is critical for him to not relapse and diet, herbs, etc. will also address that. The whole point of treatment, either conventional or alternative, is that you debulk the body of as much cancer as possible, but eventually "treatment" ends and the hope is that the immune system will be able to finish the job if there is any cancer left. Unfortunately, conventional treatment does not do anything to boost the immune system. Instead if significantly cripples it, sometimes destroys it and offers no strategy to rebuild it afterwards. This makes no sense to me knowing that we have already done enough to let Samuel's immune system deal with his cancer and get it into remission. His immune system needs to be built up, not destroyed. It works! So diet and immune therapy is a major part of cancer recovery and permanent remission treatment.
We have learned something else critical for Samuel's recovery this week as well. More on the gross side but you are all familiar with why he is called Pooper, right? Since starting the digestive enzymes from the ND again, the ones which contain stomach acid, we have noted a huge improvement in the quality of his poop. We stopped using these when he had his ileostomy taken down and then had the vicious cycle of his anus closing down because we did not want to add additional acid to the problem. Now, that we do not have that issue and his gut has had sufficient time to heal, we notice that these enzymes make the difference between him getting some of his food digested or all. Here is an example. I gave him beet juice the other day with only apple cider vinegar to help in digestion. Without a colon, beet color does not change and is passed out the same color as it went in. Carrots do the same thing. In a few hours, he was pooping beet colored and smelling poop which was not well formed. The next day he had the same meal, but followed with an enzyme. He pooped out brown turds all day that both looked and smelled like poop. No residue of beet anywhere. It was an incredible difference. His poop is almost as smelly as it was with the "air bag" which in this case is a GOOD thing because it means he is getting 100% of what he is being fed and is feeling SO MUCH better. I think we found an element we have been missing. We realized in the last week that his poop hasn't smelled like poop in years. It always smells a bit like whatever he was fed but we just assumed it was because he did not have a colon. When I told the ND Samuel relapsed, his first thought was that he relapsed because of malabsorption in the gut. I am starting to agree. Certainly, he felt much better and had more energy when he had the ileostomy because we were able to use these enzymes at that time. It is great that we will be able to use these again and even better that he feels so much better with them. We are hoping to see him regain the energy he used to have early in 2005 before his ileostomy was taken down. His life and death may reside in his gut even more than we thought, and that is saying a lot because we put a lot of emphasis on it already!
We are looking forward to a nice uneventful weekend at home. Last weekend was a bust for sure. Spending the day at the hospital and the next day detoxing from the hospital does not make for a fun relaxing weekend. We all felt cheated. Tomorrow is Kaysha's 11th birthday. Mark is going to drop us off at the mall for a little while so she can pick out what she wants. That will be great! We spent last night as a family movie night watching Transformers and it was such a wonderful time for us to relax and spend time together. The movie was great too. I loved it.
Please praise the Lord with us for His guidance, His Miracles and ordering our steps in a way that got Samuel the treatments he needed at the right times. God knows what we need. We praise Him for that! He keeps putting the pieces of Samuel's puzzle together for us and it is awesome to watch it all fall into place. Some days I am even astounded by the things I get to write into this log! I feel in my spirit that with God's help, we have done something big! Miracles abound!!!!! Much love.
10/17/07
Stand still and see the Salvation of the Lord.
Today's Labs.
WBC 3.9k
ANC 78
Blasts 12%
HCT 35.2 It went UP!
PLT 36k
LDH 301
CO2 19
Phosphate 5.6 NORMAL
Mag 2.4
Differential is back. I got a thrilling call from Kelly who could not wait to tell me that Samuel's liver functions are completely improved. One which was 500 is now 70. One which was 800 is 400 and the other which was 800 is 19. When these came back so high on Monday, I told the clinic that perhaps it was overloaded since suddenly Samuel was able to eat food and digest it after weeks of being starved. Plus, it would have to handle the tumor lysis without help of bicarb not to mention phosphate poisoning. Today, his phosphate is normal for the first time in over a month. No more tumor lysis! His CO2 is almost normal on it's own. His LDH is significantly down and might only reflect the liver issues at this point and not cancer because I believe these blasts are DEAD and his body just hasn't cleared them out yet. While LDH is used as a tumor marker, it also reflects tissue damage of the major organs, heart, lungs, liver and kidneys etc. and Samuel's liver enzymes show damage to the liver currently. His HCT went UP! Oh, praise God, if that is not a sign in itself. Only a handful of days did we see this raise on it's own. I imagine that by Monday, we will be looking at a very normal panel of labs. We will get platelets tomorrow hoping it is the LAST time for transfusion. We are believing in healing as we always have. God is doing His work at this very moment. All we are doing is feeding our child and God is taking care of his cancer. I am holding all cancer treatment other than diet at this point. Major praises!!! Blasts have dropped by another 50% overall in the last two days. Samuel is having his best day in weeks today and it has just blessed me SO much.
10/16/07
Samuel has had another great day. As you can see by the picture above, he looks amazing! We all remain thankful that he can eat and poop. I have had a lot to do today with researching liver issues. Hopefully those labs were incorrect but if they are not, then we have another task to work through. Samuel had TPN induced hepatitis in 2004 and upon coming home, it took about three months to rectify with diet. That and he was still getting chemo which did not help. Tomorrow we will know more as we will see another lab panel. Certainly his liver has a lot to do right now and with all the things whacked out in his body, it would not be surprising to see it working a bit harder. However, the labs from Monday indicate moderate hepatitis and that just seems impossible based on what we are seeing in front of us. He has still been needing a little help with stomach acid today as well but thankfully, it works great and has him feeling full and satisfied with no burning diarrhea. My ND started Samuel on this particular digestive formula in 2004 when we hired him and I used it quite awhile and then have taken breaks from it here and there because he hasn't seemed to need it. Mainly, it is my rescue for intestinal blockages because it literally digests anything. Right now, it is a lifesaver! Praise God for another good day. Just need a few million more.
10/15/07
Today's labs, shocking to all.
WBC 3.7k
Blasts 26%
ANC 37
Monos 1
HCT 34.5
HGB 12.4
PLT 62k
LDH 501
CO2 15
Phosphate 7.0
Mg 2.6
All liver enzymes are whacked. We don't know why and we think the values we received today are wrong because Samuel has felt great, can eat and poop and has had a great day. The values I received were reflectant of someone VERY sick and he is anything but that. I am surprised the chems did not look better but perhaps that will take some time. Most shocking is the WBC and blasts decreasing by almost 50%. We gained good WBC's and lost a lot of blasts. Samuel's HCT and HGB are incredible and we hope he might actually be making these cells again. Platelets are not shocking however and he will need those by Thursday unless there is another shocking turn of events before then. We asked that labs be done Wednesday rather than Thursday just to see if the liver panel is right. Certainly the tumor lysis continues and we got what we prayed for, a turnaround on the blast to good WBC ratio. Hopefully there will be no blasts Wednesday. We are still holding cesium at this point and virtually doing NO cancer treatment. Our hope in seeing these values now is that the bicarb infusion, a very proven cancer treatment, has killed what is left and adding cesium to it was just beating a dead horse.
Samuel has only needed stomach acid for the morning today and I switched to apple cider vinegar this afternoon. His butt is looking and feeling better and he woke up so happy this morning, it was such a pleasure. Overall, he is doing great, feeling great, no pain, no suffering and totally starving. His weight has dropped to 39 pounds over this episode but our very real hope is now that remission is closer than we had hoped. Things look promising. We are thrilled to see the gain in good WBC's and decrease in blasts in the hopes that the infection is really behind us as well. It seems like Samuel's marrow is in shock again producing very few cells of any variety at the moment as it purges the reminder of the blasts out. Mark noted that each set of labs only leaves us in suspense for the next batch. You can only imagine the clinic's surprise and suspense over these and the next set as well. That is Samuel, turn on a dime.
RN Kathy brought each child a huge pumpkin today so they spent the entire day carving them out. I spent the entire day making Samuel's food for the week. Samuel spent most of the day eating or running around.
Please join us in praising God for His guidance! Obviously we were lead to make some good choices this past weekend. Praise the Holy Spirit who is our guide. Certainly, no one else knows what to tell us at this point. We continue to listen to the Lord. And bless Mark who just trusts my instincts regardless of what crazy thing I say I am going to do with Samuel's treatment next. Thank you to each and every one who prays for us. This has been a good day, we need many many more like this one. Amen!
10/14/07
The short and best part of the weekend story is that we have real poop. Softly formed turds, my personal favorite kind. We are so thankful. I cannot even tell you how thankful. The road to this place, however, like everything else, has not been easy.
On Friday, we decided that our next thing to get rid of for Samuel is the bicarb infusion. This is one of the last things he is on that may be affecting his gut. We also thought that since sodium bicarb is a cancer treatment in itself, it was enhancing the effects of cesium in a NEGATIVE way, as in killing to many cancer cells to quickly and making him sick, so we really needed to get off it. So, after a mild need for it early in the day Friday, we opted not to hook him up overnight just to see if my suspicion was right. After a four hour probiotic fast Friday night, he actually started pooping turds after weeks of nothing but diarrhea. We knew we were on to something. The next day, he was also pooping well, slept in his own bed and woke up feeling good. It was great. Didn't last, however. After getting his am dose of cesium, two hours later, he had a major electrolyte crisis which was so horrible that it made us late to the hospital to get platelets. Two hours late. It compared to the one we were last inpatient for. Incredibly awful searing back pain. And upon getting the infusion as a rescue, about an hour of misery later, he felt better, but was immediately back to butt oozing diarrhea again. We were admitted for platelets and they drew a CBC which looked like this.
WBC 4.7k
Blasts 75%
ANC 0
HCT 19
PLT 14k
The RN who brought these to us said, "You know that these are abnormal, right?" I guess they were expecting a little bit better looking numbers. Not impressive at all. However, we took this with a grain of salt as he was hooked up to fluids until we walked in the door at the hospital. These values may be diluted. Also, his CBC never looks right after a crisis such as we had that morning. But as a result, he also got blood. Platelets were two hours late and went without incident until the very end when he started complaining of his neck hurting. We immediately thought he was in need of bicarb again. Every time he ate anything, I could just see it literally sitting in his tummy bothering him and about an hour and a half after eating, he would say his tummy was hurting. The bicarb was ordered and blood transfusion okayed. Mark took us with Anna and opted to take Anna home and pick us up later that night after the transfusion. Well, he got platelets at 2pm but did not get blood until 8pm. So we spent the night rather than have Mark come get us at midnight or later. As soon as Samuel's platelet's were done and he had been unhooked for a time, his neck pain went away. The bicarb arrived and within ten minutes of starting it, he was screaming that his neck hurt again. It occurred to me that either the fluids were cold or being run too fast and it was irritating him. So, I had them stopped and again, he improved. Nothing is ever without incident apparently. It was a pain and stressful as well because we really wanted him to be able to get ALL the blood this time with no problems and I could just see him screaming that his neck hurt the minute the blood was hooked up. It seemed the long break between everything going into his line did the trick. That and running the blood slow over four hours with a warm pack on it. He did fine. Thank God! We said a major prayer for that before it started.
Meanwhile, I asked my Onc clinic on Friday if they knew of any possible GI issues with bicarb over this long period of time. They did not see how it could affect the GI since it is given IV. I believed different so I called a pharmacist while inpatient last night and chatted with her for awhile about possible issues. She did mention abdominal distension, which basically means your gut stops working well, as one of the side effects. She was unaware of the half life of bicarb however, so we are not certain how long it stays in the system especially being on it for a few weeks. Normally, it is used as a rescue, not a treatment. At any rate, we did not have the infusion last night and Mark and I decided to hold all cancer treatments at this point, mainly cesium to see if we still get the crisis or not. This morning, his poop was better again and upon coming home, I gave him back the stomach acid with each meal and guess what, we have real poop. We have not had a crisis today so we are certain that they were definitely tumor lysis. He is absorbing food again and is quite perky and feeling good. Obviously, the bicarb limits the production of stomach acid which is integral in proper digestion. I hope to not have to supplement this stomach acid long, thinking that once his food is absorbed a few days, the bicarb effects will leave his body and we will be able to restart cesium in small doses and work up. I think we will know that the bicarb effects are gone when he digest food again without aid. At that point, we will restart cesium slowly and hope to not lose too much ground while we wait this out. What we are certain of is that cesium works extremely well on it's own and does not need enhancement. So we look forward to getting things back on track, but for the time being, Samuel's gut is on the right track and he is no longer starving. I am certain that his HCT dropped fast as a result of diet more than anything else. I am also certain that our clinic will be stumped by his labs again and call to ask if his infection is back. Thankfully no. We will get a complete lab panel tomorrow and I anticipate seeing improvement in the chem panel. As for the CBC, well, it could not look worse than yesterday. His good WBC was about 1.5 or something like that. I would rather see this higher and if that means the blasts are higher, so be it. We need those good WBC's to heal the gut and his sore butt. He is feeling better today though and we praise God for that. We are also praising God for continuing to lead and show us how to care for Samuel and get him well again. Always always listen to the Holy Spirit regardless of what any man says. This has been like a huge puzzle and each day we find a new piece to help put it together to get Samuel feeling better. Thank you for your continued prayers and support. I am cutting this short because I am SO ready to sleep in my own bed. So so tired but thankful. Praise God for gut restoration quickly!
10/11/07
Labs today.
WBC 12.4k
ANC 248
Blasts 62%
Monos 3%
HCT 25.6
PLT 43k
HGB 8.9
LDH 501
C02 21
Phosphate 7.6
Mg 2.5
You might be wondering why I am posting all these numbers which you may not know what are. Mainly, for my records at this point. These labs look a lot more accurate than the ones we received on Monday. I am happy to see Samuel's WBC is up again actually because with the gut issues he currently has, he NEEDS to have a higher good WBC. He also had some monos today and still an ANC so these are all very positive things. Blast percentage is down, LDH is also down, good signs. That phosphate is up again though and this ended up being a hard, painful day for Samuel. The last two have been pretty good. I had him feeling great yesterday and then I ended up with a bout of vertigo again. This is becoming a much too familiar problem for me. I knew something was coming though because I have felt so awful all week and it is incredibly hard to take care of myself sometimes though I am trying to get a grip after last night's misery. I just cannot succumb to sickness at this time.
Samuel's gut continues to be dysfunctional. I suspect enteritis at this point. And it seems like we take two steps forward and then one back. Today has been awful. Everything seems to go right through and he thinks he is starving. His butt is broken out pretty badly and with this low good WBC, it is not healing very fast. We need prayers for his good WBC to come back up, kick out the blasts and take over the better part of the percentage. We need prayers for his GI to recover asap. The last time we did a major gut recovery diet, it took about three months to get things under control. Samuel may not have three months to do what I need to do diet wise to heal this. Unfortunately, the gut healing diet is contradictory to the cancer diet so therein is a big problem. But I told the Onc clinic today that my main priority now is to get the GI under control. The cancer is just going to have to wait because Samuel's body is useless without his gut working properly. The only remedy for this is time unfortunately. Time and a better WBC to help heal it. Earlier this year, we only had gut problems, not gut and cancer problems. So, this is precarious at best. And very very annoying. But at least the cellulitis still appears dead, pray it stays that way.
Some good things today are that his liver functions have normalized after stopping abx. They were a bit up. Also his BUN was also up the last few times and it is normal today. His BP today was 120/80 and for him that is also good. First more normal BP we have seen in awhile. He spiked a temp of 99.9 about the same time the muscle pain flared up and I think it was the phosphate which did it since it has also spiked. His body just cannot tolerate this. At the same time his diarrhea really took off and I feel like the two problems are somehow connected. Especially since yesterday and the day before were pretty good. I will also note that his HCT is where we thought it should be, obviously that 37 was way off. We will go to the hospital on Saturday for platelets and labs again just to check that HCT. I suspect he will need blood next week at this rate.
It has been another long day. Samuel needs your prayers for his GI to heal, his good WBC to go up to do this quickly, and stability everywhere else in his body. His body has a lot to do right now. I feel overwhelmed for him since he has not a clue other than when he suddenly feels like crap after feeling great. It is absolutely that fast. And it can leave just as fast when you hook him up to fluids. At least we know how to quickly right one problem. There is no quick solution for the gut other than God righting it. We have been down this road already. For those of you who keep asking why we are not doing chemo, hopefully you have your answer. Samuel's GI is so fragile that it cannot handle the assault of abx, much less high dose poison, radiation which is worst on the gut, or transplant which would just kill him torturously slowly. I reminded everyone today that abx was to be our final resort in a life or death situation. And it was. Pray we have no more of these situations in the near future. God knows our needs, and He always comes through so we will keep listening and trusting Him. No one else has the answers, I can tell you that.
10/9/07
Samuel has had a much better day today. Day two of detox is going well. He has had relatively few poop accidents today if you compare to yesterday. However, it is obvious that his gut is still not working properly. One of the things I talked with our former Onc about a few weeks back was the fact that Samuel was, at the time, still making the other cell lines. He reminded me that the blasts don't kill the other cell lines but rather starve them out by stealing their nutrients. So it made sense to be certain that Samuel was getting all his nutrients, or even more since cancer was eating as well. But within a few days of that, the diarrhea took over and what nutrients he got were lost quickly and the other cell lines stopped functioning as well. So, going back to life and death in the gut, getting his food properly digested is going to be key in getting the other cell lines back as well as getting rid of the blasts again. Currently, I think that Samuel is absorbing some nutrients, perhaps hyper absorbing some, while not absorbing others depending on what part of the gut is malfunctioning currently and this in turn is part of the reason his chemistries are so whacked. Today seems like we are making good progress in that he has felt pretty happy all day, hasn't needed any pain meds at all and has not complained of muscular pain at all. He took a short nap and woke up happy, which hasn't happened in a long while. He has played most of the day and thankfully forgets misery as soon as he feels better. As for me, I am still exhausted. Sleeping with him at night is at least helping me sleep better but mentally, this is exhausting and physically, even moreso. However, in stark contrast to traditional cancer treatment Samuel suffered through in 2004, we are home for the most part, he doesn't need some surgery each week to correct something devastating, he can walk, talk breathe on his own and play. We are together as a family and I am not left to wonder which organ he will have to lose next. So while this truly sucks at the moment, things could be a lot worse. God provided us with a supernatural strength to get through that time period and He provides strength now. I just pray for more restful easy days, peace and restoration of Samuel's gut quickly so we can get on with things.
Want to send out special thanks to those who have sent Samuel cards, and donations to his medical fund. Things have been especially tough this month. If you had trouble logging on to the site today, I realized that we are out of bandwidth and had to upgrade to a bigger amount to keep the site visible to everyone checking in. We thank God for each and every person coming to check in on and pray for Samuel and our family! Praises for a pain free day of recovery for us all. A few more and I might even feel human again.
10/8/07
We had a nice mostly uneventful weekend. Yesterday we took a quick walk in the windy weather. The only places I go these days are to the hospital so getting out somewhere else was nice for a change. We took Samuel into the hospital to get labs and platelets but it was not a fun or easy day. As a result, I am quite exhausted.
Labs today...uh, don't make sense.
WBC 7.4k
Blasts 68%
ANC 222
HCT 37.3....huh?
PLT 19k before transfusion
LDH 676
CO2 17
Phosphate 6.8
Everyone was thrilled. "Did you see his Crit?" Uh, 37.3? That is not possible. I imagine my Onc is scratching his head over this one too. Funny thing is that the other counts don't seem out of line like they can due to dehydration. I have seen many a dehydrated lab result and they usually end up with everything looking concentrated. I anticipated Samuel's platelets to be 22k today and they were less than expected, not more. So, we are not quite sure what is going on there. Him making reds would be great, don't get me wrong, but as Kaysha says, he looks horribly pale.
He has dropped another 5k of cancer cells in the last few days which is great but we would sure like to get the upper hand on that blast percentage. We stopped abx today and as Monika says, everything always comes back to his gut. RN Kelly asked me today how his diarrhea is. Horrible! He was so miserable today while getting platelets. His legs hurt, his butt would not stop pooping, and his temp spiked to 99.9f fast. The best BP we got was 135/85 and that is not saying a whole lot. It is time to get this thing under control and that begins and ends with the gut. Life and death are in the gut, don't kid yourself. We are doing a major detox now and eliminating everything we can in favor of diet and cesium. Most of the herbs are eliminated, the drugs eliminated, until we can get a handle on this diarrhea. This is starting to remind me of how his gut behaved when we came home from the Anoplasty in Portland. Everything was out of whack for months. We cannot afford to have that happen at this moment. His gut is the main line of treatment and without it functioning properly, this becomes much harder. Hence, why we are still doing the IV fluids. I also think a lot of this is still tumor lysis. He has eliminated a lot of dead cells over the weekend. We actually think we saw this happen right in front of our eyes yesterday with 6MP and MSM, which apparently bound together and hit his system fast causing a major immune response. Considering the miniscule dose of 6MP, I am certain that most Oncs would never believe it but by the same token, I think those cells that disappeared from the overall WBC died last night. At this point, we need to slow things down a little and let his poor body recover. Let my body recover from the stress I have to endure too. The last 24 hours have been a whirlwind! I am ready to sleep, at least in dreamland, life is easier.
We see labs on Thursday again and I pray that the next two days bring Samuel some restoration to his gut. Hopefully this will help his electrolytes to get back in balance. Until then, we are doing the IV bicarb as a rescue, and it works beautifully. We will be traveling with it to the hospital from now on so we don't have to wait to get home to hook him up. I anticipate he will need platelets again Friday and I don't look forward to it at all after today's misery. Things are just so much easier to manage from home when he is miserable. Please keep praying for relief from the ups and downs here. God is listening!
10/6/07
Another good day Praise God! Better than yesterday actually. No major pain, no need for ibuprofen, no temp over 98.7f and his body is doing well regulating that. We see a trend of the temps going up with the ph going up and that makes us think that cancer cells are dying and his body is just working hard clearing them out. Samuel's ph was in the 8.0 range a lot today which is very very good overall. He has played with his sibs today and been pretty content. He still tires easily and still has a pretty short rope for tears if someone annoys him, but definitely an improvement over the early parts of the week. I am thankful for another day to breath a little easier, worry a little less, sleep a little sounder. Sleep being my only other escape. I dreamed of being at the beach with Samuel playing last night, and then later riding my first horse with Samuel. Seems we do a lot of fun things when I sleep.
Samuel's tummy continues to look better by the day and I would swear it is the IV bicarb, great stuff. I dripped some of the solution on my ph strip to see exactly what ph we are pumping into Samuel and it hit 8.0 quickly. Yeah for that! Die cells, die! Samuel has been getting the minimal dose of the abx for two days now and things have improved overall with no backsliding on the infection so I am pretty certain that Monday will be the last day. That makes three weeks of abx, longer if you count the oral I started sooner in the week than the IV's so almost four. I hope this thing is dead. I pray this thing is dead. It is time to move on to dealing with the blasts again and we are anxious to get back to dealing with just that. It would be nice to have him back in remission by Thanksgiving if not before. As I have said before, transfusions are for the birds.
I found some really good dietary info today which I hope will help me to balance out the mineral issues in Samuel's chem panel. I hope to see an improvement by Monday. I hope to see his good WBC improved by Monday too. His diarrhea seems to come and go but I haven't used imodium today because it is actually backing him up a bit if you can believe that. My feeling at this point is eliminating all the conventional meds is going to right a lot of the wrongs eventually anyway.
Sending out some special thanks to Mollie for your lovely notes to Samuel. I do love your stationary! Also special thanks to Kellee M. for the supplements you bought for Samuel today. We are very excited to use these and hope they bridge the gap between whatever cellulitis is left and stopping the abx. Thank you for calling and your family's prayers. We need those most.
10/5/07
Labs Today.
WBC 14.8
ANC 300
Blasts 71%
HCT 29
HGB 10.1
PLT 64k
CO2 21
Phosphate 7.7
LDH 746
These labs do NOT line up with the child I have layed eyes on today. For as awful as yesterday was, today was the opposite. After 13 hours of sleep, Samuel woke up and felt well all day. A little low grade fever overnight however, 99.9f, which we were not impressed with. But it hasn't been a big issue today. He has had NO pain today and played with Anna most of the day which is saying a lot because she is the first person he "hates" when he feels bad. So she was happy to have her playmate back. Samuel did not need IV fluids at all today and in that respect, it has been a lovely day. A day for catching my breath, and resting. The RN who came today asked if I ever get away, or get a break. Days like these are my break. And what a welcome relief from yesterday. Praise God for a good day. We will hook him up to fluids again tonight in the hope of getting that CO2 up. He had to have been really low yesterday to have labs look like this today. That LDH is way up again and it probably was from yesterday. The CO2 drops and the blasts and lactic acid just have a free for all. There are some great things on today's labs in spite of the blasts being up a smidge. Remember that these labs don't tell which blasts are living vs. dead and based on the phosphate and LDH being so high, and yet Samuel feels so good, I would say that they are dying well. Surprise! He has an ANC. Low, but better than zero. He never had an ANC with this high of a percentage of blasts previously so this is a very positive thing. We know that it can be here one day and gone the next so we are just happy to see it especially knowing he had a little fever. His HCT and HGB are actually holding great which tells me that his tummy infection is not doing anything. We hope it is dead! Red cells dropping was one of the first tell tale signs of problems. That and the swelling, not being able to eat and pain. None of which he has, praise God. He can still eat and everything just continues to look better as far as the bruising goes. He has enough platelets to get through the weekend but we plan to just go to clinic Monday for labs and platelets because obviously he will need them then. Another positive thing which happened today is that we saw his ph hit and go over 8.0. We have not seen this in a few weeks. With the IV abx, we were lucky to see it go over 7.2. The higher it went the better he felt today and this high saliva ph is our goal. We are happy to see this happen today because that means the changes we are making, while slight, are making a difference. We pray for a nice quiet uneventful weekend to relax and enjoy being home. I have spent way too much time at the hospital lately. Praise God for a good easy pain free day.
10/4/07
Today has not been a great day. It could have been better, Samuel could have gotten up off the couch to play. He could have pretended he was a dinosaur and chased the other kids all over the house. He could have colored ten pictures for his Dad while he was at work. But he didn't. He mainly just hurt. We got his new fluids with a larger dose of bicarbonate and started them tonight. He finally decided to just go to bed at 6:30pm instead of staying up to 9pm. I miss him of course but am glad for the break because I have mostly tried to console him and take his mind off things all day. The day started off so great too. Right up til he got his abx and then that just seems to start the push pull effect with this ph. Within a few hours, he starts to have muscle pains. We are looking into decreasing the dosages on these abx now since he is either getting the max dose or being overdosed on them. Hopefully, this will help balance things in his body a little more. The days are just extremely hard when he feels so rotten. Mark and I were talking about how well he was doing when we came home from the hospital, after he had been off of abx for about 14 hours. No pain, no nothing. Right up until we gave the first oral dose of abx and then everything started all over again. These abx are like battery acid at this point. It really seems to us that if we dropped these now, the crisis we are enduring would be easier to overcome.
His tummy still looks good, feels good and he is eating and being fed like I would expect so things look promising from that standpoint. However, our Onc was going to visit with Dr. Underpants about the abx and when to discontinue them. I already know what he will say, keep on til he has an ANC. And since we don't know when that will happen, that is precarious at best. Hopefully decreasing the dosages will still provide coverage for whatever residual may linger while allowing his system to not have such a huge assault on the ph. Mark and I are very cautious about just stopping the abx but at the same time, we cannot go on like this either. I feel like I am in a glass jar trying to find a way out and there is no escape. How did we get into this mess? How did things go so wrong for Samuel? I just want to wake up from this nightmare. I pray that we see a change in how Samuel feels tomorrow with the new fluids and reduced amount of abx. For all of our sakes, and sanity. This has been a long hard day. One in which Samuel asked me to pray for him several times. Things are much easier to deal with when he feels good.
Please pray for better days, wisdom in how to balance Samuel's needs and care. Strength and stamina. I really need these right now because once again, I am exhausted. We thank you all for your support and prayers. God is our refuge and I come to Him and ask for rest, a break, and a glimpse of the good which is yet to come.
10/3/07
2nd update
The rest of the labs
ANC 0
Blasts 68%
LDH 544
Phosphate 6.6
CO2 21
Our Onc was pleased with the WBC being down and blasts dropped another 4k overall. The ANC being zero is not surprising, we knew that was coming. His good WBC is about 4.6k right now so it has dipped a bit but his immune system is KILLING blasts so I suppose it is not shocking. Samuel's CO2 is at the bottom of the normal range and it seems obvious that as soon as he is off the drip, it dips causing the muscle pain and spasms to continue. We talked about upping the amount in the bag or adding a bigger bolus first to try to offset the breakthrough pain and issues in the day. So, our Onc is working on that. The platelets went in just fine with no complications, thankfully. A day like Sunday can leave a bad taste in your mouth. We are all pleased to see the LDH down from 818. That overall is telling in the grand scheme of things. His LDH wasn't even this high at the original relapse date. So he feels much better but we still have some tweaking to do with the fluids to try to get the CO2 to come up. We do not know how long we will need this additional boost but if baking soda IV is the cure for the blast crisis, well, how simple is that? Okay, not really that simple, but it certainly has turned things around quickly. I just love God's natural medicine.
My Onc shared with me today that he was phoned by the MD who just published the latest ALL relapse protocol in regard to Samuel's case and the cesium protocol. He was quite happy to speak with her and thought she was just the person to see cesium in action. He faxed her my personal treatment plan for her to help another family she is working with implement. This being the only other family I know is using cesium for treating relapsed ALL. So, that is exciting. My meeting with the Onc today was very positive and I always like that. Last week I had Mary send a note to some of the RN's in the clinic who report the lab results to me. There have been some issues with communication, negativity and "joking around" which has been inappropriate because I really don't find any part of this amusing. I have chosen to surround myself with people who can be positive and have faith in spite of what the labs show but when the person reporting it to you makes a bad report worse, it just is not a good situation. I can feel bad about Samuel's labs just fine on my own. I need them to be positive regardless of the report especially in light of how quickly Samuel's body turns things around. So, in that respect it has been better. There is really only one RN there Kelly, who does a great job dealing with our situation and has ever since 2005 when we transferred our care to Tacoma. I made sure she did not get the memo. Some of them are great when things are going well, labs are heading the right direction but when there is a problem, they just lose some professionalism. At that point, I ask that they hand the phone to someone else who can be objective and answer my questions, help troubleshoot and save his life. As I have said before, many of them are just waiting for the trainwreck and as most of you know, the deck is stacked against Samuel, so I just don't need to be around that. I thanked my Onc today for wanting to save Samuel's life regardless of how we have to get there. I truly feel like that is his goal and he has been fantastic about doing whatever I ask med wise without question. So our goal remains the same. Get the blasts gone as quickly as possible and restore the ANC because we are uncertain of the infection status currently. I definitely got the impression that the Onc believes we will get to remission again. We will see labs on Friday. He feels we might see some help from the MTX 6MP combo then as well if not already.
Samuel's tummy looks better, acts better in regard to him being able to eat and not hurting later. These are all very good indications. It is not swollen. Our Onc thought that we would know by tomorrow or so if the oral abx are not going to be enough. I ended up having to give them with Imodium just to stop the diarrhea, and this seems to be working well. We are also seeing his ph go up after being fed rather than just staying the same because his food was just going right through him. Just having him digest his food has made him feel a lot better. I spend a lot of money on food and supplements for him and he dang well better be getting the benefit of them. We also think getting the diarrhea in line will help the CO2 stay up. If things are still good in a week, we will ask "Dr. Underpants" what he thinks about stopping the abx in order to get the blasts completely gone. Without an ANC, this becomes a bit more tricky. Each day tells a new tale in a very long book it seems. It is so hard to be patient.
Thanks to each person who has taken the time to write or sign the guestbook this week. It means a lot to know you are praying and standing on the Word with us. Many have asked what we might need and as always, our needs are basic. We are in survival mode. Gas, food, bills, etc. Samuel's medicines are paid out of our pockets so we put a lot of money to that right now. Mark and I are trying to balance our work and taking care of Samuel and it is so difficult to change gears for us. Especially when things go wrong. Nothing else matters at that point until you get the power bill shut off notice. I just applied for emergency assistance with the power bill so that we can put that money into Samuel's medical costs, gas to and from the hospital, etc. Now that Samuel is going to be transfusion dependent again, that is just more lost work time. So, with all that said, gas cards, food cards, etc are always welcome because then we can put that money into other things. The last three hospital admits, I have spent NO money on food there or coffee. Nothing. I either went without, picked off Samuel's plate, or ate off vouches which they provide in Tacoma, but not Seattle. This is in no way a pretty or easy existence. Sacrifice is never easy, fun or fair. I am certain that every family dealing with childhood cancer will tell you the very same thing about their finances. I usually do not post this stuff here but since I have had at least ten notes asking, I will post this here. Sorry I don't have time to answer you all individually. There is no money tree in the backyard. We are both struggling to work and save Samuel being as our Onc said, "Our own ICU." It is true. It is not pretty, it is a balancing act. It always has been. We will continue to endure, and trust God for the rest. He always provides. Samuel has fought hard to survive and we will continue to use every resource we can to help him live out the number of his days according to the Word of God. We pray for an end to this roller coaster soon. As Mark says, the only thing worse than the roller coaster is trying to get off.
Please praise God with us tonight, things are heading in the right direction. Pray for special covering over his body against the infection which we do not know the status of. Pray for our caregivers to help find the right fluids to stop the pain he continues to have. Praise God for his life and his miracles which continue regardless of the naysayers. We will continue to look up at perfection which is Jesus when what we see in front of us makes us weary. Bless you all.
1st update
Preliminary Labs PRAISES!
WBC 14.5k
HCT 29.8
PLT 28k
HGB 10.5
No differential yet and we will go get platelets at 1pm today and find out more about the chemistries and blast count at that time. These are very positive counts, going in the right direction, HCT holding well, probably only down because of platelets being low. Based on how it just dropped two points a day last week, I would say we are on the right track. Samuel's tummy actually looks like it is improving even more than we have previously seen. He can eat, and be fed his usual amount and hasn't complained about his tummy hurting at all. He has been sleeping well, diarrhea is more under control and he has spent the entire morning playing like he has much to catch up on. His electrolyte imbalance seems to plague us a bit yet with little dips and painful episodes so we will talk with our Onc a bit about that today and see if we need to add to the dosing of bicarb in the fluids. We are expecting good things today. Thank you for your continued prayer covering. Jesus is taking care of us.
10/2/07
First off, thank you for your continued prayers. Another near tragedy corrected by God. Second, if you did not see an update for a few days and were wondering what was going on, a lot of times I update on the Announcement List only while inpatient because it is so hard for me to see and type on the laptop. My computer at home is nice and big and oriented for a blind person but the laptop is not so it is very difficult to write updates on this site with it.
We decided to take Samuel in for blood and platelets on Sunday because we were concerned that he would be dead by Monday. Dead from internal bleeding. It was a good choice since we noticed his nose had been bleeding on the way in. I spoke with my Onc Sunday morning and he arranged for us to be admitted to the Onc floor for the transfusions. We were pleased with this vs. the ER. We also talked about his labs from the day before and he felt that Samuel was still making neutrophils because his leukemia had not completely taken over.
The biggest problem we are having at the moment is a contradiction between abx and cesium. One of the major warnings I received before starting this protocol was that patents on cesium who received abx seemed to have their immune systems go haywire and never recovered. Meaning, they died from the complications. So we were hesitant to add abx for this reason. But obviously with the cellulitis, we had not choice. In Seattle, it did not seem to make a difference with the treatment. Perhaps because the blasts were gone. We do not know. So we were anxious to get off the abx asap. As soon as the infection flared up, two days after starting abx he had 50% blasts and it has been downhill from there. His system seems to be making cancer, killing cancer and causing a huge electrolyte crisis in the process and I can easily see how a person could die from this. We have been talking this over with our Onc for two weeks now trying to decide what to add to keep the leukemia under control while we get the infection under control. It looked apparent that the cesium was only making things worse last week so we eliminated it for two days and it ended up being the WORST two days ever pain wise and the blasts just took off. Once we saw Saturday's labs especially the LD which had almost doubled, we knew that the cesium was still a benefit and taking it out of the mix now was a bad choice. So we added it back and immediately Samuel improved symptom wise. Another choice we made Saturday night was to add methotrexate and 6MP to the mix. Yes, these are chemos. However, after doing research on DMSO and certain chemo drugs, there is good evidence that DMSO binds to certain chemos and takes them directly to cancer cells, leaving good cells alone and therefore you can use about a 10% dosage of chemo. We have been talking with our Onc for days about this so after Saturday's labs, we added these drugs in miniscule dosages. The hope was to not see side effects or any damage to the immune system because of them. I told my Onc that Samuel's body should not be immune of the effects of these since when left up to me, I rarely gave them orally. And funny how it does not seem like poison when you add them in miniscule dosages hoping they bind with a drug that will find and destroy cancer cells only.
So Sunday, we drop the kids off, thank God, and headed in for blood products. We did his abx IV on the way so that he could just get blood products and we would not have to try to sneak them in too. Samuel's pain all week has been awful and strange. Either it is neck pain, shoulder pain, or leg pain and it is all on one side. Our Onc ordered sodium bicarbonate, or baking soda to be added to our IV and that seemed to help out a lot. His CO2 level dropped to 15 last week which is very low and acidic. His phosphate is high, magnesium is high and chloride is high as well. All bad and hard on the system. Indicators of tumor lysis syndrome. The platelet transfusion went okay til the end where he developed a funky cough. I gave him nettles and they started the blood and the cough went away. About 2/3 of the way into the blood, he said he was getting a "neck hug" and started getting itchy. So the blood was stopped and benedryl was given. Once that was on board, his whole body went haywire. He started having muscle cramps, twitches and could not control his legs. They seemed to be having seizures. Painful seizures. His blood pressure had also been going steadily up and was 150/100 and would not go down. Our RN, Sonja, who was fantastic throughout everything called our Onc who had stat labs drawn, a chem panel and urine cultured. He ordered a bolus of sodium bicarbonate as well. So while we waited for these things to come back, the blood was tossed with him only receiving 2/3 of the unit. It was awful to have to waste it but it seemed that everything that went into his port caused the spasms to worsen. Our Onc also ordered Tylenol with codeine and I was thinking about all the GI issues we were going to add with benedryl and codeine but we gave it nonetheless. Samuel managed to fall asleep and his legs just continued to twitch uncontrollably. Sonja came in to say that our Onc was certain that what we were seeing was the leukemia taking over and this was just how Samuel's body was reacting to the process. If this is how kids die of leukemia, I can tell you that you do not ever want to see it, much less go through it. It was horrible. I just could not believe how awful everything got very quickly. I asked Mark at that point if we were still in agreement that if his heart stopped, we would let him go and he agreed that we would. Samuel has suffered enough.
Labs came back and Sonja brought them directly to us without even looking at them first. We all looked at them together. I actually thought her doing that for us was extremely nice. We got the CBC without a differential and his WBC was 25, down from 29.9 the day before. At that moment, I was certain this was still tumor lysis. His chem panel was still pretty messed up with CO2 down to 17. After seeing that, I okayed the bicarb infusion thinking it was his ticket to relief. The spasms continued for at least an hour. Once the infusion started, they started to become fewer and farther between and by the time it ended, the spasms were gone. He woke up, perked up and began playing and coloring again. The differential came back showing 79% blasts. 2% neutrophils. I had done the math and figured that the differential would have to have 84% blasts to equal the number of blasts we had from the day before. So they were marginally down, but so was his overall WBC and ANC. It had dropped from a good WBC of 9k, ANC 1200, to WBC of 5k, ANC 500. It felt like a punch in the gut.
Mark headed home around 9pm and I had a long talk with Samuel about Jesus, heaven, and cancer being a demon spirit that was trying to kill him. We talked, we prayed, and we shared what the Bible says about healing and long life. He prayed the prayer of faith, asked Jesus into his heart, asked the angels to watch over his body, and cast the demon cancer out. He has the kind of faith God calls "childlike". The kind of faith God honors. He believes Jesus is in him and no evil can overtake him. After that, he told every person who came into our room that his body had a demon in it but that Jesus was getting it out. We finally went to bed around 12am with him feeling pretty well overall.
Mark and I made some decisions regarding the abx that night. It was obvious that if we keep him on the IV abx, he was going to die. If we take him off and the infection comes back, he may still die without divine intervention. If the blasts take over, then our options become very limited. So I asked the RN to hold the am dose of abx until I spoke with our Onc. He came in around 9:30am. Samuel woke up with his shoulder hurting, but he could walk and sit, and play. A little ibuprofen helped with the shoulder and he was then fine, felt great all day. Our Onc was fine with making a switch of IV abx to oral at this point in the hopes that we have good infection control and that this will reduce the acidity issues in his blood at least a little. We also asked to take sodium bicarbonate home IV for the overnight infusions and asked that it be mixed without dextrose. I guess they forgot, that just FEEDS cancer. He agreed. The chem panel done in the morning showed Samuel's CO2 at 23 which was now in the normal level. Everything else had improved as well. No one drew a CBC however so I asked that we do that before leaving. Every CBC drawn when things are going wrong has been inaccurate. He agreed and also said that he feels the spasms were due to electrolyte imbalance and not the cancer. I am certain he was expecting to see a MUCH higher WBC and in fact it went down. So, it felt like we had a good plan. We will know in 48 hours if the oral abx will be enough to keep his tummy under control and allow us to get his blasts under control. He thought that we might see some results from the MTX 6MP combo by Friday. And if not, then there was one other single agent we might explore. Labs came back a bit later.
WBC 19.2k
Blasts 72%
ANC 400
HCT 30.7
PLT 56k
Boy, were we overjoyed with these. Samuel dropped 6k BAD WBC's in 12 hours time. This was the first decrease we have seen in two weeks. His good WBC remains about 5k so as of now, only bad cells are leaving his body. Obviously adding the sodium bicarbonate was a bonus. Sodium Bicarbonate IV is actually an alternative cancer treatment so I am extremely pleased with such a good response. It is also useful for infections and bacteria so I am hopeful that we will continue to see Samuel's tummy resolve and heal. Our goal with the Onc now is to try to get Samuel's CO2 to 30 and get rid of the blasts as fast as possible to be sure he can fight any residual bacteria which may still be in his tummy tissues. Boy, were we praising God when we got these results!!!!!
We came home mid afternoon and Samuel was jumping on the bed, couch, running better than he has in two weeks and not bothered by his neck or shoulder AT ALL. We took him to the creek to play once the other kids came home just to get away from this life for a little while. He was pretty exhausted by evening, as was I. Around 7pm, his shoulder flared and now we pretty much attribute this to bicarb loss and hooked him up to his IV immediately. His diarrhea is still an issue and the more he goes, the more depleted he gets. I want to slow it down, but not completely stop it because I know it is dead cells and they need to exit. So we are going to hook him up for another bolus of bicarb during his nap today and see if that helps out overall. He slept great last night in between Mark and I. He has been sleeping with us since he started the IV fluids at night since he cannot get up without help to go to the bathroom. He woke up with his shoulder hurting a bit but a little ibuprofen and food and he is playing like he hasn't been able to in weeks, and he hasn't. So, we hope that our plan for managing this will help his body to detox from the cancer without being painful. The acid in his poop seems to be gone and that is really a bonus. We are not certain if the oral abx are going to hold us back with the ph therapy to the degree that IV did, but we do not feel like was can abandon them as of yet. It is all a balancing act. Our hope after seeing labs yesterday is that the bicarb will help with the push pull effect we have going on right now between the abx and cesium.
Everyone was just shaking their heads yesterday as we left the hospital including us. Samuel is certainly the turn on a dime boy. Hard to believe that he could go through something that utterly seemed like death was looming and the next day act as if nothing ever happened. Sonja came to visit us yesterday morning to see how he was doing and even she was shocked at the turnaround. What I like so much about Tacoma is that the RN's actually seem to care about you and your child. They don't leave and forget you.
The Onc clinic was planning to draw labs Thursday but I am going to call and see if they will do that tomorrow instead just to see what platelets are doing. I don't like nosebleeds. And he is playing like a madman so I am certain he is using them up.
Oh, how we praise God for His protection. It has been a hard week and harder weekend. I cannot tell you that my faith did not waver in light of the horrible reports and things I was seeing with my own eyes. I forced myself to look to Jesus with everything I had. When that did not seem enough, I enlisted Samuel's faith because his is pure. He and I laid hands on his body yesterday morning and cast that demon cancer out in the Name of Jesus. It has no right to claim his body. No child should have to die from this beast. No parent should have to endure what we have endured. Samuel has fought SO hard to live. He deserves to live as long as he wishes. He wants to be a hundred year old man who is a doctor, a nurse and a firefighter. Sounds like a good plan.
Please pray for God's continued wisdom for us and our caregivers. Bless everyone who prays for us and cares for us. Monika, thank you for calling. It means so much to hear your voice. Samuel is healed in the Name of Jesus. Demon cancer, be gone in the Name of the Lord. You have no place in our lives.
10/1/07
Samuel is doing better than he has in weeks. I feel like I just went to the battlefield, gained a victory, and now I am exhausted. Praising God for His mercy. This has been a scary ride. I will update later. Thank you for your prayers and love.
9/30/07
We came inpatient for blood and platelets but are here for the night due to tumor lysis which caused uncontrollable cramps and pain for Samuel. It was very scary but he has improved a lot. Our Onc is saying this is just the cancer taking over.....
We pray and stand against that report. Please pray for us tonight and as you get this. We are tired and it is hard to do what I need to do spiritually under these circumstances. I need your prayer covering for Samuel's continued miracle.
