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.
