8/20/07
Labs for today
WBC 3.8 up from 2.8
ANC 1657 up from 980
PLT 89k...great!
HCT 31 up from 29...awesome!
Blasts 0
Labs are great today and things are definitely moving in the right direction. However, we will probably not leave today because his WBC is still not normal. Our Onc clinic was thrilled to hear the counts this morning and I was thrilled to share them. We hope to see his WBC climb tomorrow and the wound continue to get better so we can go home and be followed by our homecare and the surgeons in Tacoma. Samuel continues to do great. The wound care RN was here and told me it would take a normal person 2- weeks to heal from this so Samuel is making great progress. Praies!
8/19/07
What a difference a day makes. Samuel received blood and G-csf last night and perked right up.
Today's labs
WBC 2800 up from 1700
ANC 980 up from 221
PLT Holding! 93k! I expected much lower
HCT 29 Not a huge bump here but he bled a lot yesterday
Blasts are zero
Everyone was really impressed with this bump of the counts only eight hours after the injection. Our former Onc here thought that his neutrophils might not be very useful but I beg to differ. I asked my GI how often they give G-csf to a cancer patient who has not received chemo first to destroy the marrow. Good point, she thought. His body is starting to heal and fight. Samuel has had a great day. The best day of the last several weeks for sure. He woke up happy and was happy all day until he needed a nap. He was sitting in his bed instead of laying for most of the day and that just tickled our GI to see. My whole family was here when she came round and the first thing I said was that we were ready to go home. She asked if our home health care would work on our case on a Sunday. So, perhaps we will leave in the next few days if this keeps up. The surgery team thought it more important that Samuels counts be up for us to leave than seeing tons of healing of the wound. The wound looks incredibly better than yesterday and everyone was impressed and in agreement that the plan we have is working. I am very pleased to see results with the G-csf. Samuel hasn't felt this good in so long I don't even remember. Samuel will receive another shot tonight to further stimulate his white count but my hope is that he won't need any more. I have felt all along that it just needed a nudge. He experienced no ill side effects of the shot either and for that I am thankful. He did finally get some diarrhea, either from morphine I did not okay them to give, or the abx are finally taking their toll. Also the way he is being fed is not helping either. So now his butt hurts, he says, more than his tummy. He hasn't complained about the tummy at all today. He even asked me to carry him and he hasn't allowed that for weeks because it has been too sore. So obviously we are on the right track.
Mark and the kids came this morning to bring supplies and visit. It was very nice to have them here for a little while. Mark wowed the doctors with his nursing skills in handling all of Samuel's dressing change needs while he was here. I was impressed with the doctors for allowing him to do it since it seems rare they think a parent can actually do something.
It seems like the bleeding on Samuel's insides has stopped or slowed. Certainly his platelets held for 24 hours. I am excited to see what the counts look like tomorrow. I hope they all go up and Samuel will no longer need transfusions. The MD's change out tomorrow so we might see our GI once more before she is off rotation. Hopefully we will be able to make our exit home in the next day or two. We know Samuel's body can heal if it is given it's own cells to do so. We also know our God can fix anything and for that we give praise!
I want to shout out a very special Thank You to Kathy, our special home care RN who facilitated getting us up here in the first place. It is awesome to have people who will advocate for you. And of course special thanks to my GI for calling me at home right away to get us here as well. Thus far, this has been a very pleasant stay, but of course, we are ready to leave. they are not doing anything now that we cannot do at home. I think tomorrow will be pretty telling in the remainder of the time we will be here.
Please pray for continued healing and better counts so Samuel's body can do what it does best, heal horrible wounds. Why these awful things have to happen to him, I won't know, but I can tell you that everyone here thinks he is made of steel. Pray that we go home soon where life is easier because our family is united. Right now Samuel is crying because he misses his daddy ad wants to sleep in his own bed. Praises for recovery and the good staff around us right now. It is amazing what God can do. Praises that just one day can make all the difference in the world. Praises for peace that continues to pass all understanding. Praises for the best supporters we could ask for, both family, friends and doctors. Thank you for your continued prayers.
8/18/07
Well, looks like we will be staying awhile. We took the bandage off the wound today to find another area of the skin has now opened up If you look at the picture above and note the darkest spot to the right near his side, this spot is not open nd draining. The tube is gone, a smaller one inserted and that has left another crater. I fear that the other dark spots in the photo above will also open up and drain next. The darkened areas are now considered necrotic, or dead tissue. I have been mentioning for weeks now that Samuel must be bleeding somewhere because his red blood is dropping so fast and for that matter, his platelets as well. I think I might have finally gotten an MD to agree. This whole area is filling with blood, poss and platelets. This is where it all is and why we are not seeing it in he peripheral blood. I really think it is miracle he has counts at all at the moment. Still no fevers!
Today's labs.
WBC 1700 up from 1500
ANC 221 or 13%
PLT 96k, transfused yesterday, should be higher.
HCT 21, transfusion today.
No blasts.
General surgery is now involved much to my dismay and I have already had issues with their "service" which I hope we have worked out now. They will be coming every eight hours to look at the wound now and hopefully have been informed of the proper etiquette in entering our room and doing anything with Samuel. We had a few "rounds" with hem last night and today because they thought they would be ripping off all the dressing and tape that was just done within an hour of the procedure. I showed them the door. They came in to see today when I had removed all the tape and dressing myself and no one was overly impressed but no one was freaked out either. We think its still improving bat at this rate, it will be weeks. So, the plan now is to start G-csf to stimulate his white cells to fight and heal the skin. We are still waiting to hear the Onc weigh in on this but it seems here is no other option. I don't think it will actually take much of it because his body is trying it's best to fight with the reduced number of cells it has now. I also think he is making both red cells and platelets on his own, but they are being wasted with bleeding in the wound itself.
Samuel has had a hard day and has not been very happy with everything being messed with. I wasn't really happy this morning either but thankfully our GI has gotten things back onto the right track. It certainly looks like we have another few days here, I hope not a week but it all depends on how this progresses. I have had more than a few people come in and say this is the worst thing they have seen around a g-tube. The NJ feeds have been going fine other than he doesn't feel full and thinks has is being starved. And he is not able to eat food at the moment because no one wants to chance stomach contents leaking into the wound either. Just one more reason for him to be unhappy.
My prayer is that we see this turn around in a major way. I think getting his body to retaliate now and heal the best thing we can have happen. I know he can heal anything if he has the cells to do it. I know God can heal anything if we only believe. We believe God heals cancer so this should be no problem for Him to deal with. Please continue to pray for things to go well here and for all our MD's to be led by God....or stay out of my room if they are not. Monday, both the Onc and our GI are done with their rotations and we will get new people so I am concerned that when that happens, we will not be as well advocated for.
Praises for cancer to have left Samuel's body! Praises that his anus is finally healed after some three and a half years of struggling. That one hasn't even had a chance to sink in yet. Pray for us to be able to do what we do. Healing!!! Pray for our other children who also suffer in our absence. Mark needs to be able to work so we will need to arrange care for them as well as all the other frustrations at the moment. I think they will all come visit us tomorrow and bring supplies. That will be nice.
8/17/07
2nd Update
It is done. Samuel came through great Good news first. His butt is perfect and we are probably done with the dilations. Our GI was really impressed with the change because for once, it wasn't tight at all. Now for the tube. She was easily able to remove it and ended up placing a smaller tube in the hole to keep it open. It is draining. Wound care was called in for help in dressing the wound. They got puss out of it as well so he should start feeling a lot better and hopefully we will see improvement in the WBC now since that is where they all are. The wound culture is growing gram negative bacteria, not sure which one yet but he is covered with abx for the right strains anyway. Surgery was called in to see the wound and the hope is that tissue will not have to be cut away. No one is doing anything right now because of the WBC. So, we pray that it recovers and his body heals the way we know it can and surgery is not necessary. His stomach on the inside is perfect and the wound encompasses the outer skin layers mostly now. His entire tummy is dressed and taped from side to side with drain bags everywhere. He seems comfortable. The NJ tube is in and being used. His feeds will change to a 20 hour slow drip so it will take a day to catch up on what he has missed today already. He was not happy about the nose tube at all either. They sent him back with a terrible tape job on it which all had to be ripped off and redone. He looked like an elephant and I was NOT happy at all when I saw it. Our GI called later to say it needed to be retaped to find out it was already done. Samuel received platelets in the OR today because my GI is THAT meticulous about things. His PLT today were 56k, so down. They also drew a type and cross and he will most likely get blood tomorrow. We will see labs again in the morning.
I made the GI cry today. She is just really emotional about Samuel. She is an angel on earth to us and I let her know that as I usually do when we see her but this particular hospital stay so far has been stellar and she is the reason why. It is amazing how well things can actually go when you have an MD who gets you and your kid.
It has been like old home week. I caught Esther in the hall way and told her about the relapse. I haven't shared this news with too many people IRL actually because it is just not the kind of news one likes to dole out. It is easier now, however, because I can say he relapsed and is now most likely in remission. So, we chatted awhile. Our former Onc has visited us twice in the last two days and asked me a bit about the cesium and DMSO. He was actually pretty amazed at how Samuel is doing, his counts, etc. It was nice to visit him and he is on call this weekend. He told me he is leaving Monday for a trip and I told him I did not plan to be here Monday either if I can help it. He said he was NOT surprised to hear that at all. It is just too hard to do what we do for Samuel here. As soon as this is under control and well on the way to healing, we will go.
Samuel is now pretty comfortable again and seems to have made peace with his nose tube. That is good, it took ten minutes. I cannot wait for him to feel better. He is already making lists of what he wants to do when he feels better. It has been nine months since we were inpatient and I am amazed at how much more mature he is than the last time. Sometimes I feel like I am conversing with an adult. Well, until he starts screaming about not getting his way. While this situation is not good and certainly the wound itself looks even worse than I imagined, I feel peace knowing that we are in the right place and God is with us always. We hope to sleep tonight a little better than last. We pray to see a WBC rising fast now that the puss has been released and for our team to get a plan of how to get us home. Please pray for no complications and healing. We NEED those WBC's. Praise for the peace that passes understanding, MD's who are angels on earth, and remission. It is so nice to be back in a hospital with people who know us. I cannot even tell you how glad I am to NOT be in Portland reliving that!
1st Update
Things are going well. Samuel's WBC today is 1500 ANC 300! No blasts. The plan is to remove the G-Tube and hopefully insert a foley to keep the hole open but allow healing. Samuel will have an NJ placed for temporary feeding needs. Our GI will scope everything out and also check his anus while there. Cultures are all negative thus far. IV abx started and so far so good. Please pray for the procedures today to be without complication. Things are more tricky with a low WBC and ANC. Our GI is outstanding and we trust her to be as careful as possible. Best of all, Oncology is leaving us be. We are hopefully going to the OR around 11:30 am PST. Samuel is feeling better than ever which is really astonishing everyone involved right now because he should have a lot more issues given what the site looks like. It appears to have developed a crater around the tube site and is deepening by the hour. Skin is just sloughing off in sheets and the whole thing is still draining. I think we are actually getting down to live tissue now rather than the black tissue we were seeing but will wait to see what the GI thinks after looking at it with a scope inside out. It looks horrible but I think Samuel would be having a lot more alarming symptoms if this was going to be really serious.
I talked to him this morning and explained that he will come back with a nose tube again. He is okay with it for the moment. We will see what he thinks when it is done. It is going to be inserted into the small intestine bypassing the stomach to allow it to heal and moreover not to leak food out of the hole. I am not overly impressed with this placement because it eliminates a very important stage of digestion and since Samuel has no colon either, he is left with a small intestine to do all the work now thankfully, his food is predigested so I hope that with some minor adjustments, this will be okay for the interim. I can honestly tell you that whatever my GI says is best we will do without question. And if you know my history with MD's you will know what a huge thing saying that is.
Of course we are thrilled to see Samuel's ANC so high, now 20% of his total WBC. Huge! And no blasts, also huge! We are pretty thrilled overall and will be happy to put this all behind us. No word on when we might expect to leave but if Samuel continues to do so well and feel so good, I doubt it will be more than a few days.
8/16/07
3rd Update
We are now inpatient. Things are going well. Samuel is fine. Perhaps a plan for tomorrow? We shall see. Cannot update the website tonight however. Labs drawn once we arrived show even more marrow recovery so we are very pleased. They may remove the tube tomorrow and send us home with an NJ tube for a few weeks until this heals and another GT can be done. Another surgery. Pray for things to go smoothly and for our MD's to be led by God I know my GI already is as we have had the red carpet treatment thus far thanks to her. More later.....Much love.
2nd Update
Labs for today.
WBC 1400 up from 1100
Blasts 0
ANC 12% up from 5% = 168
PLT 72k....looks like platelet recovery!
HCT 23.4
Our Onc agrees that Samuel must be in clinical remission! Praise the Lord! The marrow is recovering. I am trying to pack for the hospital. I seem to have forgotten how......
1st Update
Just a quick note to LYK that we are heading up to Seattle Children's to be admitted. Our GI is inpatient this week and after e-mailing her a picture of Samuel's infection, she wants us there asap. We are fine with this because we know he will get the help he needs from an MD who treats him like her own son. Probably be there for 72 hours minimum. Please pray for things to go well and us to get home asap. Samuel is actually feeling much better today in spite of his G-tube seemingly sinking into his gut. Much love.
8/15/07
Today has been nice in that I actually got some things accomplished. Samuel, on the other hand, spent the day as he has the last two weeks. Miserable for the most part. His sore has decided to open up in some areas and drain more, which is good because it is getting rid of the infection, but bad in that it is now even more sore, and even more raw. There are two open holes at the bottom left and right of the tube now which are draining. The thought occurred to me today that we really should not use the tube at all right now because of this. But the thought of the nose tube was not pleasant either. I asked Samuel and he said he would rather suffer the g-tube than get a nose tube. It would just be great to remove the whole thing and let it heal but that is not an option either. Samuel says this is the worst thing that has ever happened to him. I guess he doesn't remember much of the last three years then. However, we were lucky enough to never have gaping open wound with low counts or ever have a surgery done with low counts. So this is absolutely miserable. He asks me to pray for him everytime he goes to sleep and honestly, I just want to beg God for mercy in this situation because it is so awful right now. Samuel needs healing, he needs his WBC's back and he needs to move on. He told me today that he just wants to get better so he can have fun again. And he can hardly walk. Daniel noticed that you can now see his ribs showing and all his bones protruding because he has lost so much weight over this. And we know that everything with Samuel can turn around overnight and we just pray that tonight is that night. Please pray with us for healing. And know that it IS better than yesterday but at this rate, it could take weeks to resolve unless we see some WBC's coming back to help out. There have been many times in this journey that we felt like we were living Groundhog Day. This is one of those times. The day keeps repeating but does not seem to change much. I will see what the RN who comes out tomorrow thinks of the progress and possibly speak with our Onc who was back in clinic today. We praise God for always being with us and we pray that He remember that Samuel has suffered ENOUGH. We know He can change this with one touch.
8/14/07
We are back from another uneventful platelet transfusion. Other than the two hour wait for them I guess. Ugh! Samuel was miserable near the end because he wanted to take a nap, or get in the tub, see his dad, or just go home. It took forever, in other words. How we pray this is the LAST time. I told him he needs to make his own from now on and he grumbled, "Okay, okay." Really, enough is enough. He should be making his own ANY DAY!
Today is still marginally better than yesterday and each day that has come before marginally better than the last. But as you can see, there is still a large area in need of healing. The RN's today were still happy that is IS healing despite how awful it looks and feels. So we got a refill on the antibiotic at this point because today is day 8 of 10 and obviously, it is not healed and gone. We will most likely stay on it until we see the WBC climb and take over. It is still very sore especially when pain meds or salve wear off but each day more easily controlled by both. We really want to get in to see our GI and have her change this out under sedation and get a good look at both the stoma site and his anus asap. So we hope to see platelet recovery by Thursday so we can get on her schedule for next week. We need prayers for this to happen. If we do not do it next week, then we will have to wait another two to have her do it.
Samuel's color looks great and his overall energy is better but he is still very wiped out from all the issues of late. We are thankful that the fevers have finally disappeared after weeks of dealing with them. We look forward to a quiet day here tomorrow to hopefully clean up the messes we seem to generate on the days we leave all day and no one wants to do anything but relax. I know I would like to sit somewhere and relax for a few weeks but there is still work to be done. Our usual Onc returns tomorrow and I wonder what he will think about everything that has happened since he has been gone.
Some have asked about the kids's hobbies, sizes, etc or if we need any items personally. This info is on Samuel's main page near the bottom. Sometimes I just do not have time to answer e-mails unless it is is simple yes or no. I haven't even had time to open my mail lately. It is sitting on a pile in the kitchen. I am going to show Kaysha how to sort it all out I think. There is just so much to do here right now so please forgive me if I do not write you right back. I know that you all try to understand. Thank you all so much for everything you do! Technically, Samuel SHOULD be in the hospital with the infection, low counts, etc. But we choose to do all his care ourselves so this makes for a busy day when you factor in three other kids, two dogs, a husband and a mound of laundry you would not believe! We appreciate everyone's efforts to help out but please know our main need will always be prayers. My mission to is save Samuel's life and I will always need God's divine wisdom for that. This is not me but Him through me. This is God's hand, God's medicine, God's will and God's miracle. We praise God for that. Praises for a smooth day, Samuel's improvement, and being cancer free. Prayers for marrow recovery, the infection to GO AWAY and that we can see our GI next week and move on with our lives.
8/13/07
MAJOR PRAISE! Samuel has no cancer in his blood!
WBC 1100 up from 900
ANC 55, 5% of the total WBC, highest % we have seen thus far
Blasts---0 ALL OF THESE WBC's are GOOD!
HCT 28.9
PLT 29k transfusion tomorrow
LDH 118 low normal!
Oh, how we praise God right now!!!!!!!! This is step number one to remission. Step two is complete marrow recovery. But, we DO see some progress there even if it is slight. The RN's were impressed with his ANC. Today is slightly better than yesterday as far as the infection site and his pain level. The fevers seem to be gone which is probably explained by the ANC starting to show up again. Praise God for holding us in His hands today and His miracles! Prayers still needed for the infection to clear, pain to stop, and marrow to recover. Please please praise God with us tonight!
8/12/07
Slow, slow improvement. The overall area of the infection has actually decreased by half from Monday to today. When I dress it, I have to cover a lot less area and what used to take four pieces of gauze now takes two. What is left, however, looks perhaps worse because it is in many stages of oozing and peeling. It now reminds me of a horrible burn I got when I was 16 years old. No fevers today over 98.6f which for him is still hot. He had a lot of comfortable moments today and was pretty friendly to us for most of the day. He played a little with Kaysha this afternoon. He dresses his wound and changes the dressings when soiled. He also picks at it which I think is actually making it more sore. He ate some of his cereal today which he hasn't had for probably two weeks. He also ate some more soup which he gobbled down like a starving boy. His color looks really good still considering I have seen new blood mixed with old in the oozing mess. And his butt is still just fantastic! I could not be happier about that because I just cannot imagine having both problems right now.
The infection has come back to the area in which it seemed to first start which was a little to the right of the tube. It was wrapping around his back earlier in the week to the point where you could not even rub his back because even it hurt. We are pleased to see it going away, each day noticeably better than the last. However, with such a big area still affected, it seems like we could have this a month. I can certainly see him doing another round of antibiotics yet before we are done. I think today is day six of ten and this thing is still hard, sore and ugly.
Last night was better than the one before except that he woke up around midnight and could not get to sleep until 2am. That is the bad part about sitting around all day, you do not get much exercise and you do not get tired. He slept in to 8am and both upon waking from the night and later from his nap, it was obvious that he was desperate to get away from the pain. So there is about a half hour both times that truly sucks and then things are better. He bathes several times a day to soak this and in the last few days has started to lay on his tummy a bit in the tub rather than sit pitifully in the corner. So I can tell that overall, it is less sore. Moving the tube and hooking up to the tube is still awful and no matter how careful I am, I still manage to hurt him.
Labs tomorrow again to see if there is any change in the marrow. By his color, I think his red blood is holding even with what is going on but it is hard to tell since he flushes when he hurts, cries or sweats. I just realized that he did not do the hot and cold thing today, you know fever rising and breaking, so that is an improvement Even when he did not technically have a fever, he still broke into a sweat as soon as the ibuprofen took effect. We have not seen that today and that is a first in weeks as well. It would be great to be beyond that but as I said, every time I write it, it seems to come back so I rebuke that here and now. We continue to pray for marrow recovery. This would be so much easier with his body fighting this with more cells. Today definitely seemed better than the last week so I am just waiting to see some good news tomorrow.
I am constantly amazed by my miracle boy. The things he says, the things he learns, the things he remembers, his elephant memory, the incredible way he learns things even when you are not teaching him. He reminds me of myself in so many ways everyday from the things he says, or does, or thoughts he shares with us. I am reminded over and over how close we are in spirit as well as our love for each other. I look forward to doing school with him and teaching him things about life as he grows up because I already know how he will learn best and what he will think about most things. He is such an incredible gift from God and will always be. Certainly, he is the child MOST like me of the four of them.
Overall, it has been an okay weekend given the circumstances. We were able to do a lot of family things and things are always better when Mark is home. We have weathered so many difficult situations together and during the week, it is hard without his presence for everyone.
Praises for improvement, praises for a nice weekend, praises for labs we expect to see BETTER tomorrow. Praises that the cancer has gone. Prayers for marrow to continue to recover and for this infection to disappear. Prayers for Samuel's comfort. Much love.
8/11/07
Quickly, today is about the same as yesterday. Ibuprofen + salve = relief for about four hours before the breakthrough pain starts over. And it is awful. The tube area is draining like crazy today. Now we know where all the red blood has gone because it is all dried old blood and smells foul. The rest of the red area is peeling still and looks horrible, like a horrible burn. It is simply unbelievable. That pesky fever was back up to 101.3f today which is highly annoying but the clinic felt this was more low counts at this point rather than the infection itself. It continues to change in front of our eyes but I have been told that it will heal from the inside out so the outer layers will be the last we see heal. And worse yet, there will probably be scar tissue from the original injury where Anna jumped on his tummy. If only we could go back to that day and stop that from happening. We got him out today for a quick stroller ride in which he walked a tiny bit. So that was good and hopefully we will have a better night than last. He was up all night pooping because his body took a break from doing anything while we were at the clinic so I am just exhausted again. Pray for his body to make WBC's. He needs to use his own resources for this. This morning he told me he was afraid it was never going to get better. I reminded him that he used to think his butt would never get better and it did, this will too. His butt is still just doing great! It seems as if that three months of bliss we had earlier this year really made a difference in what that outer layer of skin can handle. It just looks as normal as ever! Praises for that. But Dear Lord, Samuel needs relief, mercy, healing, NOW. Hear our many prayers. Amen.
8/10/07
Counts for today.
WBC 900 down from 1400
ANC 0
Blasts 4%, good count 864 bad count 36. Blasts down from 10% yesterday.
As you can see, Samuel did not gain any WBC's but he did lose more blasts. I really think these are all dead and that cancer is gone but he is not making the correct cells which eat these up so they are just lingering. I really imagine we will not see blasts next week.
Samuel's transfusions were smooth and the day went pretty well considering. He slept great last night. Six hour straight. Heaven! I woke up twice to see if he was still out or not and was pleased to see him so peaceful. He woke at 3am with a low grade fever and hurting so I took care of these issues and he then slept until 4am when he wanted to soak in the tub and then said, "You know Mama, I am not very tired." Great. So, he watched TV happily until we left for the hospital.
His tummy has been very interesting today. Overall, the Onc was very pleased and surprised that we had so much improvement with so few WBC's. He assumed it would spread and today it is actually starting to fade on the edges and the hardness is softening. I made up a salve and added some DMSO to help it really penetrate the tissues and my mom and I literally watched it start to dissipate right in front of our eyes. It was amazing. It is oozing now quite a bit from around his tube and he said it was itchy and fiddled with the entire thing all day. Tonight it is peeling. All signs of healing! So for that we give great Praise because this is truly God. He has no WBC's to heal it at this rate. It is still extremely sore however. He walks like an old man and you cannot pick him up or hug him or anything because he will literally sob in pain if you do. We got some Lortab to try today but it did not even seem to touch it the way the salve and ibuprofen do when I use them together. Interestingly enough, one of the other is not enough but together he becomes pretty calm and civil. He actually colored a little while today but mainly watched TV and then took a three hour nap. The Onc was certain this is all going to peel away, layer after layer like a burn. And each layer underneath is redder than the last so it is even darker red than pictured.
One of Mark's coworkers has had cellulitis, twice, and said it layed her flat out. She was so sick, sore and exhausted yet it was only on her leg. Imagine what it feels like on your torso. Samuel is so sad and it kills me to know that he does not even understand what has happened to him. Yet, I know him well enough to know that when it is all over, he will hold a grudge against no one for it. We just want it to get better! I have used the salve DMSO combo for 24 hours with good results that even stunned the doctors so I have high hopes for the weekend. Two days ago, you could not even touch the site. Yesterday, I could touch parts of it but not all. Today I can gently massage the salve in to all of it.
Everyone asked about Samuel's gut and it is doing great. His poop has been beautiful, and does not reek of chemicals now at all the way it did when cancer cells were dying quickly. I told them I made him new food with the consistency of cement and that seemed to do the trick. Being able to use ibuprofen is such a blessing and I know that the food change right now is aiding that as well. So I continue to thank and praise God for leading me and showing me what to do that will help Samuel's body heal and fight this infection. His pain is being better managed today but the Onc feels we could deal with this for another week or two easily. I hope not. I pray not. I am doing everything possible to change that outcome for sure.
Samuel looks better with this new blood and I hope it gives him some energy and allows his body to work on the infection. I really look forward to the recovery of his bone marrow. Our normal Onc is back next Wednesday. I asked Mary why we even have him since he has been absent for every emergency thus far. I think we are going to end up with both Oncs as primary at this point. And I have to say that I have been really impressed with how our first Onc has handled things with us. He certainly remembers Samuel's extreme reactions well and listens to what I say about meds and dosages very well. The other RN's now ask what dose I want on everything because for the most part, everything has been reduced to 1/2 or 1/4 doses. Mary told me today that the Onc really respects what we are doing for Samuel and our knowledge about what his body can and cannot take. So, that is nice for a change. I really enjoy NOT having to fight for every little thing.
I am going to bed! Tired, tired, tired. Please keep praying us through. We certainly could not do this without you. God continues to hold us up and lead us on to His victory. We do not doubt that for a minute. Samuel just needs His mercy and healing hand NOW. Praises for victory over cancer because it is gone in the Name of Jesus. Praises for such a big change in the infection. Prayers for cells to come back and FIGHT. This transfusion stuff is for the birds.
8/9/07
Counts for today.
WBC 1400 up from 1100
HCT 23 down from 29, transfusion tomorrow
PLT 28k, transfusion tomorrow
ANC 0
LDH 150 bottom side of normal WOW
Blasts 10% Good count 1260, bad 140
All chemistries are normal, liver kidneys, electrolytes, everything! For that we give major praise because if you had any idea of what we have done in the last week, you would be shocked that these chemistries are normal too. I am uncertain if the WBC is actually coming up since 1100 to 1400 is not really that significant, however, we will draw labs again tomorrow to see what is going on. The overall blasts are still down which really says something about Samuel's cancer treatment as a whole. The infection Samuel has would depress any leukemia patient's marrow so we are certain that he probably would not have bottomed out had we not ended up with this awful cellulitis. The LDH is on the bottom side of normal indicating that there is neither cancer cell growth nor is there a huge amount of cells dying. It tells a lot and yet it can also tell you nothing. Whatever, we will take it. No cell destruction at least means that the bone marrow is not being attacked by cancer anymore so hopefully that will mean it is now healing. Our staff at the clinic do not feel that Samuel's marrow will recover now until the infection subsides. Looking at these counts, I feel amazed that Samuel's body has gained ground on it at all. We will head to clinic tomorrow for blood and platelets and what is going to be a long day. I hope he feels better. I pray he feels better. He is still miserable for the most part.
Temps as a whole have come down a lot indicating that the antibiotics are working, albeit slow. Obviously the white count is not helping much. My hope is that the echinacea will kick in over the next few days and get this up without bringing blasts with it. After looking at the counts for today, I am pretty hopeful that that is possible. Looks like the cesium is just working hard running it's course and hopefully by the time the infection is at bay, the blasts in the blood will also be no more. Let us all give praise here because right now, this lab sheet is really encouraging good news.
We need urgent prayers for pain issues which continue. Prayers that the cells will come back to help fight the infection. Samuel feels so rotten today and is so tired that I can only think that getting some blood will only be a benefit. The hardened area might be smaller and certain parts do not seem as sore as yesterday but now the pain seems to have spread to his back so he is having a hard time napping. We will try some other pain meds tomorrow in miniscule doses to see if we cannot do a better job on this without GI issues. I posted a pic of his tummy and as you can see, it is NOT pretty. It is horrible. It actually looks worse since starting the antibiotic so it definitely has gotten worse before better.
Samuel asked to eat today and did. None of his food boluses have been bothersome to him at all. We were not able to weight him today because he just felt too rotten but I believe we will see a gain on the weight he has lost in the next few weeks. It is very encouraging for him to want to eat and actually be able to eat with no pain.
Praises that this is still not in the blood stream, the blasts continue to die, and all his chemistries are normal. No need taxing all the rest of the organs. This also means that the swelling and lump are not hurting any of the other organs and I am very thankful for that. May God hear our urgent cries for pain relief, good white cells and sleep which we all desperately need at this moment.
8/8/07
Ups and downs today. Looks like the day I spent making Samuel very constipating foods paid off because the diarrhea is now under control. So, that is a bonus! However, his pain has really become an issue and dealing with is is not so easy. I am hesitant to give narcotics at this point because they depress the immune system and we already have that problem. So I decided to try a 1/3 dose of ibuprofen this morning just to see if it would take the edge off. Well, it worked really well and we did not have any side effects from it. How lovely is that? I am so pleased especially to think that we might be able to use this occasionally again. And about those platelets, yes, ibuprofen is a no no, but I don't care. He got relief that Tylenol just does not offer without depressing his immune system further. And oh, that pain! It was awful when he first woke up both this morning and from his nap this afternoon. That cellulitis is not friendly in any way shape or form. It is a very hard lump that looks like a terrible sunburn. I was not overly happy seeing it seemingly looking worse but read more today about how it goes away and like everything else, it gets worse before it gets better. Trouble is, you cannot tell if it is worse because the antibiotic isn't working, or worse because it is.
Focusing on the positive. We took Samuel to the park just so he could get some exercise. To lay around all day just continues to depress a body and slow down all the functions so I was very happy when he perked up and agreed to go to the park. It was short lived and it is painful for him to walk and painful to watch as well. But he did it. He was so tired after that he took an almost four hour very peaceful nap that I actually woke him up from. He woke up in pain and miserable. And about those fevers. He had a temp of 101.5f last night. Every time I write that it is better, it goes up later. So we hope this soon subsides as the infection goes down. This afternoon after he got up and had more ibuprofen, he actually perked up even more and asked to eat. Then we realized he hasn't ate with his mouth in at least a week, maybe longer. He ate a banana and then asked for soup later and ate that too. So, we will take this as a giant step forward because none of the things he had today bothered his tummy to be eaten and I haven't had to use stomach acid since Monday. He played with Anna and Kaysha tonight with his dinos and then wrestled with Mark tonight for awhile. By the time I saw him before bed he was exhausted and grumpy again. Mark did his port for tomorrow and we cleaned his tummy and tube and I applied the salve I made for it today hoping that it will sink in and help to draw or kill the toxins as well as soften up this lump. It is so painful for him. It reminds me of when he had typhlitis and acities and I do NOT like it at all. I keep reminding myself that we are home and that we ARE seeing things get better. I only hope that that tiny dose of medicine is not masking a problem getting worse.
Samuel has been on antibiotics for 48 hours. They said 3-4 days before improvement could be seen so the fact that we see improvement, even slight, early, is good. Please please pray that this turn around in a big way tomorrow. I am weary of seeing Samuel so down, tired and in pain. And yet, his butt looks great. Go figure! Who would have thought? We see labs tomorrow and that should be pretty telling overall where we stand. Echinacea continues with some other immune enhancing herbs to hopefully get his body to kick in and kill this off. Today, this afternoon, he actually looked a little pinker. Maybe he was just flushed all afternoon from actually getting up and doing something. We shall see. No one called from clinic today so I assume cultures are still clear blood wise. My prayer for tonight is for rest, no fevers when the Tylenol wears off and that Samuel's tummy be softer when he gets up. I know he will feel so much better if his tummy will just soften. Praises for poop under control and that his butt does NOT hurt! It seems to be making WBC's of it's own just to keep that area healed despite what the tummy is doing.
We thank you for your prayers and please keep praying us through this major issue. God always gives me little reminders that He has us no matter what we go through. I praise Him for keeping Samuel safe and alive in spite of everything else going on. I remind myself minute by minute that Samuel has survived much worse and complicated situations than this little bump in the road. God can solve any problem so we rely on Him to fix this one as well. Much love!
8/7/07
Another rough night because of course, OF COURSE, diarrhea. He pooped in his bed, pooped on his floor, pooped all over the bathroom floor and took a midnight tub. Today he has pooped pretty much everywhere including the tub, twice. And remarkably, his butt still looks good. We have been able to control the acid in the poop so that helps a lot at least.
Samuel is mildly better. Mildly. He can actually turn his tube all the way around today and the swelling has gone down around it enough that it no longer looks like a belly button under the tube. It has been easier for me to hook up to as well. It is still very swollen and very red. Possibly redder than yesterday. The Onc thought it would actually peel off layer after layer of skin as it heals like a burn. His temps are down. Nothing over 99f today so that is really telling overall. With all that said, Samuel has been absolutely miserable. The only relief was a three hour uninterrupted nap where he just looked as peaceful as ever. That was nice but of course I worry and check on him every hour or so trying not to wake him. I was able to give him a full feed this afternoon with additional supplements and he never complained of being full or tummy pain so I think that the swelling has really come down on the inside. This is good. However, he is not wanting to move around much and his GI is very slow so we are trying to get him up and moving several times a day so we don't have another problem brewing. Today really reminded me of a day in the life of 2004. Miserable. He hated everyone, was extra sensitive to everything, did not want to move, did not want to even look at you, much less talk to you. Pretty awful. I pray this subsides soon and he starts feeling better because it is so difficult to care for someone in this condition when you don't even know if they understand that you are trying to help, not hurt.
I called the clinic today to let them know that he was marginally better. They were actually surprised to hear that. I did let them know that if diarrhea persisted we would need IV fluids because there is only so much I can do with the tube. They told me I was between a rock and a hard place between the antibiotics and diarrhea. I told them that I do not have a problem with antibiotics which actually treat the problem. I do have problems when they decide to put my kid on five different antibiotics just in case one works, or prophylactic antibiotics just in case when he is not even sick. That is where I have issue. If Samuel needs antibiotics, I would like them to work. And thus far, it seems like things are going the right way. Unfortunately this injury and infection as a result did not happen overnight and as things look now, it could be a long recovery with low counts. Samuel's blood cultures remain negative for bacteria. Thank God!
We are doing everything we know to do to help this resolve as fast as possible. Both internally with antibiotics, herbs and food as well as topically. I asked the GI we saw yesterday if there was anything topical we could do and she said no. Nothing was going to work. Only antibiotics. What I find most frustrating is that there are MANY aspects to medicine and healing and many MD's are very narrow minded. The difference between my GI and this one, whom we also know well, is that this GI told me to "deal with the diarrhea" and my Gi sympathizes and offers supportive ways to cope with diarrhea. I guess that diarrhea is something we are used to dealing with. I have certainly seen that make Samuel hardly able to walk or move. The swollen belly, hover is much worse.
We started him on echinacea yesterday along with the pluther of other herbs he normally gets. We need to see this WBC go up at this point. We will deal with blasts after that. I just want him to feel better. Today has been difficult. My older kids and Anna played outside most of the day. I don't even know what they did. They talked to me, I don't know what about. I don't even know what Anna did today because Kaysha mainly took care of her. I spent the day cooking a new batch of constipating food for Samuel, cleaning the kitchen, doing four loads of poop, pee, and puke laundry and trying to relax meanwhile caring for him. Daniel told me he cried himself to sleep last night because he is so worried about Samuel. I reminded him that when he feels sad, he needs to just pray. We don't have time for tears right now, we have too much to do. And again, we are very honest with them about what the reality is here. They need to know what to pray for. Kaysha was hoping Samuel would feel like going to the park after his nap and I had to explain to her that he was NOT going to feel better, he is very sick. Anna knows he is sick but that is about it. Things always improve when Mark arrives home. Samuel missed his dad today and cried a little while about it. We just hope for a better day tomorrow. He seems to have perked up a little tonight again and he actually just made it to the toilet to poop. First time all day! But he is soon due for bed. And I am not too far off.
Praises tonight for improvement. Praises that his butt still looks great in spite of everything. Prayers for him to GET BETTER. And sleep all night. Improvement of diarrhea. This antibiotic is 3x day for 10 days. We are just at the 24 hour mark. Prayers for cells to come back and all be good ones! Prayers that his joy will be restored because once that happens, we all will find our joy again too.
Samuel's prayer for tonight. "Be merciful to me, Lord, but I am faint. O Lord, heal me, for my bones are in agony". Psalm 6:2
8/6/07
2nd Update
Well, it has been a LONG day with tons of stress we all don't need. My mom came to get us and looked at Samuel's tummy and said it was obviously infected. We went to the clinic where they drew labs and while we waited for those the Onc came in, took one look and said it was cellulitis. Basically a skin infection. Samuel's g-tube injury has obviously been festering for some time now and as counts fell, bacteria was able to get the upper hand. Obviously NOT good. They drew cultures again and we pray it is not in the blood as well. We will know more tomorrow. We do not think it is because we think we would see much more obvious symptoms manifesting. Mark and I know that this has been an issue on the inside for quite some time but really has presented over the last week or two with him getting more sore and able to take in less food, and of course losing weight over it. Probably when the original injury occurred, when Anna jumped on his tummy, the relapse wasn't too far behind that, it never healed right. So after getting several opinions, we came home with an oral antibiotic which supposedly has little GI toxicity and "should" be active against it. Apparently "It" is either strep or staph. If the oral does not work, then we would have to consider IV antibiotics, one of which is vancomycin which we pretty much DO NOT want to use and he will have to be inpatient if this occurs as well. We also think now, that his WBC has literally bottomed out because of this infection obviously brewing under the skin for the last weeks. Everyone else at the clinic feels like this is indeed possible as well. All his WBC's have been trying to keep this at bay and now that he doesn't have many and it has been going on so long, it can run rampant.
Today's counts
WBC 1.1k
Blasts 20% so good count 880, bad count 220.
ANC 11 Helpful, not!
HCT 29
PLT 23k transfused again today.
Glad we opted to get platelets Friday because he is obviously using them. If the antibiotics work quickly with little GI issues, great! That is our prayer because the next step would be bad. Also, we are probably going to try to stimulate the WBC to come back with herbs and if that doesn't work, with G-CSF at this point. I would like to see no blasts in the CBC but at this point, we may not get that option. This is easily a life and death situation. Yet, it is amazing to see the blast count still going down in spite of what else is going on right now. The news is not good, but could have been much much worse. We left the clinic with orders to call and check in tomorrow and let them know how things are going. We pray for improvement immediately so that we may know that what we are doing is working and not be dumping in useless medicines at this point. The hope is that the swelling and pain will subside and that he will be able to take full feeds again. After that, we get back to kicking out the cancer. Right now, his body's resources are spent.
He perked up a bit tonight and cuddled with his Dad whom he missed. This is a very hard life. Hard on everyone. Mark still has to try to concentrate on work while we wait for all this news to come back and be put together. He has to try not to take too many days off so he can keep this job since I obviously cannot do much working at the moment. Mark's parents take the rest of the kids several times a week so they do not have to sit in a 12x12 room all day. My Mom is taking days off work to run us around since I cannot drive us there. She, Samuel and I spent a very long day at clinic making decisions I do not want to make, weighing the options, deciding what we HAVE to deal with to save his life. I am spent. Mom and I had a huge prayer session over Samuel before we even left the house because things looked BAD this morning.
Praises are that we are home. Praise that this is only a "skin" infection, not a blood infection. Samuel has been through a lot worse things. There are lots of things we can do to help this topically as well. Praises that this is NOT a cancer pocket. That wasn't even mentioned. Praises that cancer still does not have the upper hand in spite of this infection. I am constantly amazed at the things his body is able to do in spite of the odds. Praises that God is with us always, and that I heard the Holy Spirit LOUD AND CLEAR today with an answer I needed right at the right moment to bring peace. You don't even want to know the heart attack I had this morning. Thank God for the Holy Spirit! Praise Him for giving us the tools we need!
Prayers needed for this infection to go away quickly so Samuel will have no more pain or issues with his tummy or tube. Prayers for the antibiotic to work quickly and only where it is needed. NO GI toxicity. This would be so much easier if his gut had not been ruined and left so sensitive to most conventional drugs. His butt still looks great! We do not need two problems. Prayers for his WBC to come back and help fight this as well as the rest of his cells to start functioning normally again. All of these things will make a huge difference right now. Prayers that I will continue to hear the Holy Spirit and KNOW how to help Samuel heal and overcome. Prayers for rest and a quiet day tomorrow. We all need that. Thank you, thank you, Thank you!
1st Update
Now that it is Monday, Oncology thinks we need to have Samuel's tummy looked at. Funny how over the weekend, I was left with "good luck." So, we are going to the hospital for labs and most likely an x-ray and who knows what else. Please pray that this is NOT a big deal in the grand scheme of things. NO WEAPON FORMED AGAINST US SHALL PROSPER!!!!!!!
8/5/07
Thus far things are better, thank God! None of us got much sleep however. This morning after pondering the latest stomach issues with Samuel, I decided to try giving him stomach acid and pepsin prior to feeding him. Guess what? It worked. No more tummy pain and he is almost able to get his full boluses again. What a relief! Apparently when your body is in survival mode, it doesn't care to eat and even if you feed it, it will just let the food sit there and bother you. So, in a way, I have tricked it by helping it function and poor Samuel actually said that his food was helping him feel better. How on earth is a person supposed to make new cells and heal if they cannot digest the food they consume? The whole tube site is still very swollen except now the area is swollen right on the tube site itself. It actually looks like it did when the first tube was surgically placed. It was very swollen and VERY sore. I let the fluid out of the balloon on the inside of his tummy, the balloon which holds the tube in place, and that seems to have given some relief. But the whole thing looks awful and there is either dried blood or food coming out of the site. Samuel's g-tube site has always been just perfect so seeing this is not something we are used to. Perhaps this is what they look like when they break down due to low counts. I don't know. I do know that when we originally wanted one placed, everyone on the Onc floor said they did not recommend it. I am sure there is infection risk and they will probably think it is infected even though we have no other alarming signs.
This afternoon after a nap, Samuel expressed interest in going to the creek, so we went. He played a bit on the swings, with the bamboo plants and walked to the water before getting tired. It seemed to help things in his gut even more than what we have already done because I was actually able to get a very large bolus of food into his this afternoon. The quality of his poop has also significantly improved today and his butt still looks great. I am glad he got out of the house today and it simply reminds me how important exercise and sunlight are to a person's well being and recovery. He should sleep well tonight and the whole thing improved his overall attitude.
Tomorrow I plan to call home health early and see if I can get an RN with more experience with low counts and tubes to some take a peek when they do labs. Hopefully we can see labs early and get their opinion so I can determine if we need to go in or contact the GI again. I did call the Onc on call yesterday when the thing looked so strange and he did not seem concerned. In fact, he figured it was leukemia that caused it. Somehow Samuel has an infestation of leukemia next to his tube in the form of a boil. I vetoed this idea of course reminding him that last I checked, he had very little leukemia left. Mark reminded me that his Onc, consequently our first Onc, probably wrote Samuel off for dead three years ago so everything that comes up will always be leukemia to him. At any rate, the whole thing has changed a lot from yesterday to today and while it looks ugly and is painful, everything else remains good.
Please continue to pray for his cells to come back, this area to heal and for his joy to return. We miss our little Pooper who is always so happy. Glory to God, Jesus gave his life for Samuel's healing. We receive it!
8/4/07
Prayers needed tonight. This has been a rough day. Samuel's fevers continue to go up and down on their own but the skin around his g-tube has decided to become very swollen, red and painful. I mean about a 3x3 section which has become a bubble. Topping that off, I think the inside is just as swollen because I suddenly can hardly feed him before he is complaining of being full or pain. This is not good news at all but we think it has been coming on for a few days as his tummy has been tender over the last few days. Probably as counts dropped this situation got worse. Today is certainly the worst day so far with the issue manifesting on the outside. We need urgent prayers for this swelling to go down and the pain to resolve. It is now very difficult to feed Samuel and thus far since the relapse, he has already lost five pounds. He does not need to lose more. Worse yet, he is hungry and I cannot feed him enough in one sitting for him to feel satisfied.
Yesterday, he got up from his long nap and had a nice evening with lots of joy which was nice to see. Not too much of that today I am afraid. Today does feel like the counts have bottomed out yet his butt looks great in spite of some persistent diarrhea again. We wondered a bit if he had some neutrophils come back and surround the g-tube site since it is so swollen....and that is an immune response. One which I don't think he would have without a white count. So, we are unsure of if this situation in the bigger picture, is a good sign. Currently, however, it is not and needs God's hand NOW. Praise God, His mercy endureth forever. We need His mercy tonight. Samuel needs sleep and with sleep comes healing, pray for his cells to come back, healthy and healing.
As a footnote to this, if you have sent me an e-mail I have not responded to, please do not be offended. I have not had time to do anything but sit at his bedside most all the days of this week. It is a miracle I get anything else done.
8/3/07
Samuel might just be turning the corner! I am trying not to get too excited as I type this but I can feel in my spirit that what we are seeing are all positive signs.
Samuel's platelet transfusion went smoothly, thank you nettles, thank you Lord, thank you prayer warriors! But, when Susan, RN, was attempting to draw from his line this morning, it did not easily draw. Ever since the relapse, it draws fine. Suddenly, it is stuck. Hmm. Do we have platelets? It was the line drawing well and bleeding out that made me take notice and realize he had relapsed. This may well be a sign that cells are back or maybe it was a fluke. We will certainly know more Sunday when Mark accesses it again. We will see if it is sticky then. Mark drove us in today which seemed like such a treat after my mom doing it for the last few weeks. I love my mom but I chose to marry Mark if you KWIM.
We visited with Mary who thought that Samuel still looked a heck of a lot better than the kids they see with low counts and given that we have dealt with this for six weeks now, they were surprised that he managed to feel good for so long. In truth, these last few days have been the worst and hardest. When you do not get a smile from Samuel, you know it is bad because his character is happy by nature.
He feels terrible still, BUT you know those fevers? They are now going up to 99f and breaking on their own. Every time I turn around, they are breaking, up and down, fast. Breaking on their own with no intervention is a GOOD sign. They were just creeping up and up over the last two weeks and requiring intervention to get back down. His whole body hurts, another sign of cell recovery. And even though he is tired, he has managed some happy moments today. I am encouraging him to sleep, sleep, sleep this afternoon though to allow cells to grow and his body to heal. I think cells are coming back. It is really exciting! Definitely something is going on. Things are just different today but improving. Pray for these cells to come back and for him to feel great very very soon.
I talked to the GI's office yesterday to give them an update and see what days our GI will be in Seattle. It looks like we can get Samuel in on the 21st assuming his cells are back and have his tube and anus examined under sedation. Wow, it felt really good to make this call and I could tell they were quite happy to hear that Samuel was doing well.
We see labs again Monday and are expecting GREAT things. Praise God and may He bless you with His presence and love today.
8/2/07
Today's labs
WBC 2.6k This is going to bottom out
Blasts 30% so good count 1.8k bad count 0.8k
HCT 32
PLT 44k Transfusion tomorrow because we do not want to chance going to the ER with such low counts.
ANC 78 This was actually 3% of the total, the biggest we have seen to date. Still not good, but trending up!
As you see, things are trending down, which makes our Onc happy, makes us not so happy just because of the WBC being so low. Overall, the blasts are going down and it looks as if the HCT is now holding rather than dropping. Praises! Our Onc actually wanted to wait on platelets until Monday just to see if he might make some. We, however have watched the trending over the last weeks and know he loses about 13k a day and if you do the math, he would never make it. We do not want to chance going to the ER with these counts so will just go in tomorrow. All Samuel's chemistries are still in the normal range and have been for quite some time now.
Both the good WBC and bad WBC dropped a point from Monday and based on that timeframe, he would bottom out by this Monday, if not Sunday. It is really a miracle that his butt looks so good right now and that he has no other significant issues at the moment. We continue to pray for God's arms to cover us as we wait on these counts to come up.
Samuel has felt awful today. Really tired. He took an early three hour nap and woke up better so we took him to play at the school for a little while. He ran around a bit and is now exhausted again. He once said his whole body hurt and I imagine it does given that it may possibly be making some good cells soon if not already. I will be so happy for this part of the journey to end. His body has been deprived of these cells for now six weeks and it is time for a complete reversal. He is exhausted. If you prayed for his rest, he is now getting it. he slept well last night, well better than the few that came before it. Exercise and sun are the best thing for him right now and he has gotten some today which means he will rest well again tonight. However, I am growing tired of seeing my little man tired, sad with fevers, which continue.
God holds us and Samuel IS healed. We believe! Much love.
8/1/07
A new day. A new month. Samuel's day 30. Things are different today. I think that Samuel's body has no more active cancer. I do. We know that on Monday we were very very close. I think that what is left is gone. Now, don't get me wrong, there are always residual leukemia cells which can lie dormant for months, even years, which is why the conventional treatment is so long. So, more than likely, he has residual disease, but for the moment, I think the active cancer is dead. What is different? Lots.
Physically, the biggest thing which has changed is his ph. I mentioned in a previous update that I had started testing it. It has always been 7.2-7.6 which is great. However, when he eats, this should raise. A person without cancer will see their ph go up after eating. A person with cancer will see their ph go down after eating because the cancer cells eat when you do. Samuel's ph did not change after eating previously. Today, it spiked to 8.0 which is in the ph which cancer cells do not survive. This is the first spike we have seen so we know now that cancer cells are definitely NOT eating at all. They are dying or dead. Praise, praise, praise! So, this is a very very positive sign and puts the physical signs we have seen into better perspective.
The physical. Samuel's diarrhea has stopped. There seemed no rhyme or reason for it other than dead tissue and cells and it is gone today. His butt hasn't bothered him today at all. It looks good so whatever cells he does have are keeping it healed so they are sufficient. Oh, how we praise God for this one!
I took the kids to the park and Samuel actually participated in playing soccer. He ran. I haven't seen him run in I don't know how long. He was running and kicking the ball and having fun! He walked a good bit and was in good spirits while he got his hour of sunlight this morning. I forgot my camera! It was so wonderful to see though. When he got home, it wasn't long before he was asking to take a nap. He woke up three times during the nap for various reasons but went back to bed each time and slept about three hours.
I am sure that his marrow is still not functioning right, obviously. It has to heal. The fevers continue but seem now limited to the late afternoon to evenings. This morning his temp was back at his baseline until after his afternoon nap. That was really nice to see. I hope the fevers subside soon but one day at a time. Tomorrow we will know more about how things are looking overall. Tuesday when Mom and I went with Samuel to the clinic for Samuel's transfusion's we prayed in agreement that that would be the last time he needed them. That would just be fantastic!
It occurred to me today that just 10 days ago, I was talking to my Onc who was skeptical about whether Samuel would reach remission, and seven days after that, we had a conversation about what was happening with his marrow now that the leukemia was just about cleaned out. Glory to God!
I cannot wait to see these good cells come back. Samuel REALLY needs to see his GI under sedation. His butt is probably fine, but his tummy tube has been giving him pain for the last 8 or so weeks. Anna was playing with him one day and jumped on his tummy, right on the tube. And it has been painful ever since. It hasn't went away. We really need this looked at on the inside at this point because it hurts him every time I hook and unhook it. Since he is hooked up a lot these days, it is frustrating for us all.
So we give praise for a really nice day with the family and for Samuel's body lining up with God's Word. Praise for Samuel sleeping a little better last night, as did I. Prayer for a better night's rest tonight. We have a LOT of living to do and we all need sleep. Thank you so much for your prayers. Much love.
7/31/07
The transfusions went just fine, thank you for your prayers! Samuel seems better this afternoon after getting blood but he is very tired from another not very restful night sleep and no nap. I am tired too! His fever continued into the night, left this morning and was back to 99.2f this afternoon. Not nearly as bad as yesterday. His diarrhea continues, however and he is getting sore. The entire floor heard him screaming and pooping at the hospital and several RN"s came running to see if he was okay. We are hoping to get to sleep early tonight and that tomorrow we can enjoy a day home with just us, no people coming over and no hospitals to go to. We can pretend we are normal tomorrow, just for a day. But I will take it. We thank you for your prayers, please pray for Samuel's butt to stop hurting. This is the main reason we did not want to see counts fall, once this breaks out, it could take a long time to heal if counts don't come up very fast. Since we spent over a year dealing with this problem, even ONE issue really is one too many. Samuel can hardly handle it anymore, especially after it finally healing and being fine for a few short months. As his mother who can do literally nothing for it now, it is very emotionally difficult as well. Right now, if the diarrhea would stop, this is still manageable. We just pray, believe and praise God for He IS the answer. Much love.
7/30/07
First off, this update Is an incredible Praise Report. And for the same reason, it is a major prayer request.
Counts today.
WBC 4.7k now critically low
ANC 47
PLT 34k Transfusion tomorrow
HCT 21.5 Transfusion tomorrow
Blasts 39%, meaning good WBC is 2.9 and bad WBC is 1.9 VERY low.
LDH 263, only 9 points away from NORMAL!!!!!!!
These are probably confusing counts so let me explain. First off, Samuel's good WBC is now critically low and that mixed with the low ANC mean he is at high risk of serious life threatening infections. We did not worry about this when his good WBC was higher but now that WBC is not adequate. Our first MAJOR prayer request is that he stay free of infection until we see these counts come up. We DO NOT know when that will be. This is now critical. The blast percentage is basically meaningless at this point because there are so few WBC's left and based on the LDH, these are most likely dead cells. Here is where the praises come in! The cells left are very few and MOST LIKELY dying or already dead. Samuel will get both platelets and red blood tomorrow so please pray for no problems on this front.
I spoke with our Onc today and we both agree, Samuel's bone marrow is officially in shock. Our Onc feels like Samuel's body is not dealing with cancer now, but rather the recovery of the marrow after cancer has left it. His marrow does not seem to be making red cells or platelets and hasn't been making red cells for at least a week. It is making VERY FEW WBC's. It is making some neutrophils, but very very few. Even so, neutrophils are made every 6-8 hours so the fact that he has any ANC at all is a promising sign. Now, it is a waiting game. We do not know if this WBC will crash even more. It could and certainly seems like it might. Our Onc is VERY pleased overall and feels like it would be a good thing to see Samuel's marrow crash because it will have "cleaned house." Marrow recovery may be slow because the cancer has been killed off slowly. Or, it may be happening slowly now because the cancer has died off gradually and we haven't killed the whole body with poison but rather nourished it instead. So, we do not know. Only time will tell. Our Onc is now referring to Samuel's first 28 days on this new protocol as a "gentle induction." For those who do not know, the first month of intense chemo is generally called Induction. It was that first month some three years ago that nearly killed Samuel and caused all the problems we have had to overcome to this day. So, overall, we are all quite pleased. A lot of the reading I have done in regard to our protocol shows that the average time it takes for tumors to become benign was 33 days. Today is our day 28.
So, overall, this is very good news and we Praise God. But, we are none too thrilled with these low counts. Besides infection risk, if Samuel were to have a sore butt, it will now heal very slowly. If the good count falls much more, things will not heal at all until they come up. So, I think I have stressed this already, but we REALLY need your prayers for God's protection over Samuel's body right now. And of course, more importantly, we need marrow recovery. Once the marrow starts producing good cells again, any residual leukemia can be dealt with hopefully by the good cells or the treatment. We have no idea what to expect right now but we do expect that his marrow will recover once it realizes it has gotten rid of the cancer infestation.
The very nature of Samuel's diet and treatment protocol are about ridding the body of microbes, bacteria, fungus and all other invading organisms. So, in that respect, I feel like we will be fine to wait things out. But, OTOH, there are other times when bacteria can enter in like through his port because of something contaminated. He is covered by broad spectrum herbs and has been for the last 5.5 weeks so we feel like we have a nice circulating amount of herbal antibiotics as well. Samuel never every got fevers with low counts while on chemo except when there was an infection, so these continued fevers are new to us and I hope just an immune response aided by the treatment. Knowing we have God with us every step makes this so much easier!
Samuel had severe diarrhea yesterday and I could just tell he was dumping dead cells. His fevers continue. Tonight creeping up to 100.6f again. We would really like to see these go away but also realize they are an immune response and the body's way of healing itself. He has been pretty miserable the past two days though. We were up just about the whole night last night and I feel overwhelmed by what I have had to do today. Yet, we press on. He has played today in spite of feeling rotten. I think this will improve a lot after transfusion tomorrow and I hope that little boost will be the help his body needs to move on to recovery. His butt so far looks good considering everything. Massive probiotics yesterday and even they could not stop the diarrhea. I knew he was detoxing them for sure. They did help with acidity in the poop at least. We also looked at his anus yesterday. I called Mark to see since sometimes I cannot tell really well alone, but it is there, big as ever, even a blind person couldn't miss it. So we are praising God for that. Just trying really hard to take care of it and it's skin so we don't have to deal with a major break out. Oh, I am SO tired and pray he sleeps tonight so I can.
I want to say a special thanks to Jaye S. You know why. Certain people are just over the top and you are one of them. I don't even know what to say to you. I just pray that God blesses you in a very special way.
Thank you to every person who is praying for us right now. We covet your prayers most always. We need God's protection as we walk down a road less traveled by not knowing what is over the mountain ahead. Perhaps it is just a hill and we will look back and laugh. I pray so. We are ready to move on with our lives. We are ready to see Samuel happy, healthy and cancer free.........again! In the name of Jesus, AMEN! and Glory to GOD!!!
7/28/07
Samuel is doing well and has had a nice day playing here. His fever has virtually been nonexistent all last night and perfect until late this afternoon when it crept up to 99.7f and then back down to the 98's with herbs. I think we have just finally gotten rid of the ibuprofen in his system, some two days later. His GI is now doing better. We did not receive a call from the Onc today so after 36 hours in cultures, nothing has grown. Again, we did not expect it to anyway. This day free of fevers has been a much needed rest for us all I might add. Samuel continues to pale out by the day and I just pray these red cells would kick back in. It feels like we are on the tip of the iceberg just waiting for that push.
I started testing the ph of his saliva today. I haven't thus far because I wanted to wait until we were closer to a remission. He tested between 7.2 and 7.6 throughout the day. 7.0 is neutral on the ph scale and anything over that is alkaline. That is where we need Samuel to be. 7.4 and above neutralizes cancer cells. So, we know diet wise we are on the right track. People with cancer running rampant are usually much lower on the ph scale, such as the 4-5's. Much more acidic. Cancer thrives in a ph level below 7.0 and the lower it is, the more cancer likes it. Healthy children have saliva usually around 7.5 so it is good to see his lining up with that for the most part. What does it all mean? It means we are not feeding his cancer. That is a great thing to be assured of. I know his diet is doing wonders for him because with his blood being such a mess, he should be exhausted and he isn't. Certainly, he is not up to par, but he is not moping around on the couch all day either.
I actually got some things done today and it felt really good. God has blessed us so much and we thank Him for another day full of joy and hope. Much love.
7/27/07
Today's transfusion was uneventful. Samuel got only platelets. It was too late for blood so we will get a type and cross Monday and blood Tuesday.
Thank you for your prayers for an uneventful day. Samuel's fever stayed gone all night but upon waking it rose to 101.1f before we left. I gave him herbs and Tylenol which usually doesn't work well for him and by the time we arrived in infusion, it was down to 99.4f. Later it was down to 97.5f which I haven't seen a 97 temp in quite some time. It hit the 99's again upon coming home and then down to the 97's again with nothing other than herbs. I used Tylenol because I did not want people freaking over the 101f. And of course, Samuel got to pay for the ibuprofen dose last night, most of the night with the butt oozing. You would think after such a long break from it, he could handle a half dose. But apparently not. So we had a very long night and got very little sleep. The only solace was that his temp was normal. There is a price for everything around here. Tylenol, thus far seems better tolerated so we might actually have to buy a bigger jug of it for emergencies.
Samuel is so tired. He slept on the way to the hospital and slept on the way back. He is also now taking a huge nap. His temp was down last I checked so I think that is a relief for his body for the time being.
Today's labs are interesting again.
WBC 7.6k
HCT 25.1
PLT 24 before transfusion
ANC 152 Hey, there is a number again!
Blasts 49% Hmm.
No LDH today to get a better picture overall. However, obviously Samuel's body is working hard AND now his legs hurt. I know that the cesium can cause pain especially at the heart of the cancer dying off and certainly, it feels like we are in that place. The marrow seems suppressed a bit based on the low WBC which incidentally REALLY made our Onc happy today. He was "quite pleased" overall. Reminder that we do not know how many of the blasts are actually dead and the dead cells in the marrow can only go one place, the blood. So, that number, while I would like to see it going down, down, down, is not overly concerning at this moment. It does irritate me that the HCT is down quite a bit from yesterday but again, I think his marrow seems suppressed. And this may actually be a GOOD thing because we know that the marrow will be depressed when most of the blasts and cancer has cleared out. It may not make much of anything for a time. Certainly we know that he was able to make adequate good WBC's and also some HCT but now he seems to be making no HCT at all and only a small amount of WBC's. That is bone marrow suppression and the fever he has had may be part of this as well. His ANC is actually pretty good considering it was actually 2% of the overall count. We haven't seen that in weeks. So it IS doing something good. I got the impression that our Onc was actually happy to see this suppression.
I did discuss the high temps with the Onc and cultures were drawn today. We will hear in the next few days if anything grows. I doubt we will see anything. Even the Onc had to admit that Samuel looked great today. So, we are good on that front. He said to keep doing my long list of things I am doing because it was obviously working. And we press on.
Praise God for Samuel's complete healing! We are not moved by what we see but only moved by the Word of God and our hope, expectation and faith in it. Samuel IS healed and we will see the manifestation of this in the natural realm. Samuel just woke up, happy, and with a temp in the 98's. PTL. I am off to play with my boy. Much love.
7/26/07
Counts for today.
WBC 6.9k
35% blasts
HGB 9.7
HCT 27.7 May get blood tomorrow
PLT 36k Transfusion tomorrow
LDH 305
ANC 0
Samuel's fever is a bit more noticeable today spiking at 101.9f before coming down but the average today has been in the 100's which does not impress me. Overall, he feels fine other than being hot so we are sitting tight until tomorrow. His WBC is down more than we have ever seen before and the overall "bad" count is down to 2.4k so that is also the lowest we have seen. While the percentage is not down much, the bad cell count dropped from 4.5 to 2.4 since Monday. They are going to repeat the CBC tomorrow because I am asking for him to get red blood as well. His body is now in a position where it is working WAY too hard killing cancer and trying to make cells so this would be a much needed boost. Also, his blood is now not as well oxygenated and this gives cancer a nice place to live again and we certainly don't want that. So, we will see what they say. Platelets for sure tomorrow and another CBC. I imagine they will want to draw cultures once they hear about his temp spikes as well.
I spent some time talking with the support person for our protocol and we talked about these fevers coming in waves for people and it seems we are in a wave because things had evened out a lot and now seem a little crazy. When the waves stop, that will be a sign that the cancer is gone and his body is healing. I will be happy for that day to come soon. I believe his WBC is actually down because he is using the good cells up. Constant fever is an immune response for sure and would use more WBC's. I also know that cancer cells cannot survive in such a HOT body and in that case, fever is a good thing if it is controlled. Even so, I have been watching him carefully all day and spending all my time supporting his body and helping it cope. I gave him a tsp of ibuprofen tonight hoping that the GI consequences won't be too severe, and followed it up with omega probiotics to hopefully ease the GI irritation this small dose will cause. I think now, the tsp is about a half dose for his weight. We will see. And I am not supposed to use it at all given his low platelets but I imagine with all the garlic and omega 3's he is getting regardless of the counts, it just doesn't matter in a one shot half dose. His temp has come down nicely tonight and I hope he sleeps because sleep is what he really needs. His nap was very short today and he is exhausted. He has no clue what his body is doing right now and just thinks he should play all day AND night and we played on the swings a lot today. He also took a lot of hot baths.
My prayer request for tonight would be for Samuel's temps to come down into a range under 100f. Yes, that would be good. I really don't mind the spikes but when they stay up for long periods, then it is irritating and I know that I will hear about NOT calling the clinic over this tomorrow. Other than the fact that is his hot, there are no other alarming symptoms. They can draw cultures and call us if something grows over the weekend. If you could also pray for complication free transfusions, that would be great. Any little thing happens now and I know they will want to admit him. May God watch over him as he sleeps and continue to show us he IS healed. Praise Him tonight with us. Much love.
7/25/07
Where is our summer going? I caught myself thinking about all the plans we had yesterday. All the things we were planning to do. How close we were to actually having a life again. How great it was...finally...after three years of hell. This is not the life God planned for us to live and I am so tired of this bondage. We have been trying to get out of this house for years now and yet we remain stuck here because we simply cannot find the time to finish up what needs to be done before selling. Now we could not sell if we wanted to. Oh, the places we were planning to go, camping trips, hiking day trips, you know fun? This journal has always been a place of planting seeds and watching them grow. When I write something and truly believe it, it usually comes to pass. So, I rebuke this bondage we are stuck in and believe that God will bring us restoration and new blessings on this front. We are stuck in a place we hate, literally. There is nothing for the big kids to do all day and it is driving me insane. They have sacrificed SO MUCH for Samuel too. We, the parents, are adults and while we do not like it, we can understand it. They have a harder time. So I will choose to believe that this too, shall change and the walls will stop closing in on us. Please pray that God bless my children in ways I cannot even think of to help them cope with this reality. And by that, I don't mean with material things. I mean with positive life experiences and fun things to do. When I look back in time, I think of the fun we had, not the stuff we got unless the "stuff" was instrumental in the fun. I don't know what they need right now to get by, but God does. I only know they need something.
Samuel remains in the same pattern for the most part. Today marks a week of the flu like symptoms and overall not feeling up to par. He wakes up pretty good, feels pretty good and plays through the morning. But by evening, his temp is slowly creeping up and he is more tired and less able to enjoy things. In the last few days, I haven't seen anything over 99f so overall, his temp has come down on the average. But for a kid who is normally 97f, this is still up there. It makes sense given that your body does all it's cleansing at night so his temp would go up accordingly. I tried to explain this to our Onc, the fever, the cleansing, etc, but he hadn't heard of anything like it. Hmm. A lot of what Samuel is going through is not written out symptom by symptom in a book somewhere so I go by the knowledge I have about the body and gut instinct, or uttering of the Holy Spirit. I think both are synonymous since I haven't been steered wrong yet when I listen to it. So, based on that, I think Samuel's cells or blasts, are sick and dying and therefore making his body a little sick as they are being removed. Based on the LDH, he did most of the cleaning out over last week and weekend and I think his body is just slowly removing them as they die off. The LDH is not picking up much cancer activity so these blasts left over must not be doing much and while they are visible in a slide, they may already be dying or dead. Samuel has had more diarrhea episodes nightly and is peeing more though intake is the same and these are also signs of the body ridding itself of dead tissues. Tomorrow we see labs again to see how things are adding up. Or subtracting out, depending on how you look at it.
Samuel did spend some time outside on the swings yesterday but it was pretty short lived. Each day shows baby steps toward feeling better though. He hasn't even asked to play outside for quite some time. And it is amazing how by morning he wakes up and his temp is significantly lowered and he is quite energetic. Neither of us are getting much good quality sleep though. Last night I changed his bedding twice and he took a quick bath at 2am. The past few nights have been similar. Yesterday, I was tired all day so I hope today will be better so I can get something done without forcing myself to do it.
Please pray for me to continue to have energy to deal with everything I must. It is amazingly difficult to get through a day here when you just feel like sleeping. Sleep has been a nice escape for me thus far. I haven't dreamed about anything that involved cancer....until last night. I could go to sleep and my mind would turn off, which was a relief because all day all it does is think, ponder and evaluate. Perhaps that is why I am so tired. Last night I had a dream that I took Samuel to his PCP for something, I don't know even what. And stranger yet, it was the PCP I fired last fall. She asked me something at the end of the visit about Samuel's cancer treatment and I said, "Oh yeah, his cancer HAS relapsed but don't worry, we will handle it." I guess this was not important info for the visit and I dropped this info as we were leaving. I suppose this lines up to our reality in a lot of ways though. Samuel looks fine. Samuel is not sick, he does not hurt, he is not stuck in a hospital. He is home being cared for by us. Certainly the Oncs THINK he should be sick, and are constantly amazed he is not. This is cancer treatment on OUR terms. If I have to go through this again, this is the way I prefer it. To a stranger, he looks and acts normal. Samuel may have cancer, but YOU would never know it by looking at him. Only a parent would notice these slight things that set him apart. Yet, we can go about our lives even now with cancer as an addendum to reality. We trust God completely to heal him and hold us as we walk this path. Cancer has no stronghold here and we refuse to fear it. We believe Samuel is healed and we will move on to the Restoration our family has been promised. This era in our lives is NOT God's doing, but you can be assured He WILL use it for good. And we won't stand in the way of that. We praise God for His love, His peace, His hands over our situation and His provision for our family during this time. Please note, I am not praising God for cancer or any of the turmoil that Samuel has suffered. That was NOT God's doing. I am praising Him for His promises of healing and restoration to those who believe. I am praising Him because He will use our situation for good. I am praising Him because He alone can fix ALL of this. I am praising Him for putting me in a place where I CAN believe that with all my heart. Everything we have been through thus far has prepared us for this. That is the provision of God. Each day is a blessing. They are not hard to find if you look. Much love.
7/23/07
We will take every victory and savor it! That is what I told the staff today. Samuel's labs are as follows.
WBC 11.4 anything in the "normal" range is good now!
Blasts 39% down from 49%
HCT 31 down from 33 but great considering platelets are so low
PLT 9k transfused today
ANC 114, up from 0 WOW!
LDH is DOWN almost 130 points to 296! Normal is 254 or below
Praises ring out from our house! Do you know that we have not seen any number in the ANC column since 7/5? And now we have something. Okay, it is not great, but it is actually a number. No, I will not get carried away with it because I have watched it come and go but look at that LDH! Now that is some MAJOR progress. Overall tumor load is WAY down. Everyone was wowing about that. I think that the overall number of blasts has not yet caught up with the LDH because there seems no way in my mind Samuel is 39% cancer. His body has worked way too hard for that. I think a lot of those cells are dead just waiting to be pooped and peed out.
Another thing to note, platelets. Look how low! Samuel's platelets were 12k when he was originally diagnosed and the signs were abundant. They dropped to 6k in a matter of hours while he was transported from one hospital to another. Today, he has no evidence of new bruises or any other sign of low platelets. I am so glad we went to the clinic so we were there to get them done though and escaped the ER. So so many reasons for praises!
Samuel had a nice day, you know he LOVES the hospital! He played with tons of toys and visited all his favorite RN's. We briefly saw our Onc who I had an interesting conversation with. One of those I will not soon forget. One of his first comments was that if Samuel got a high fever, we would need to come in. Guess he is STILL waiting for that. Apparently it is just impossible for a kid to have NO ANC for a month without getting sick. And as he was examining Samuel and everyone remarked at how well he looked, I told him that I expected nothing less than remission and a complete reversal of all this. He told me that he isn't going to make any judgements about our choices but will tell me what his uncle from Missouri says, "Show me." Right about then the LD came back and I told him that you cannot argue with the labs. This is just another one of those famous conversations I will remember forever. Show me? Fine. I will allow God to show you through us. No problem. I just love skeptical people. They have no way of explaining what is going on in Samuel's body right now because they have not ever seen anything like it. So, today, they see 39% blasts and report that to me as if it is a bad thing. Forgetting that the LDH is WAY down suddenly, he is feeling much better and his ANC might be doing something after a 2.5 week break. Oh yeah, AND his HCT is still good considering the huge drop in platelets.
Today is a victory! We will savor it and give praise to our God who is going to SHOW EVERYONE! Wow, I am so blessed to be a part of this. Samuel is hanging in there. His body is still busy but obviously the brunt of the work has been done. He is still a bit tired, more than usual but pretty happy overall. His transfusion seemed to go fine up until the end where he started coughing. It was annoying because after what happened before, you just never know. I gave him a good dose of nettles before the transfusion and another when the coughing became unsettling. It went away in about 20 minutes and has not returned since so yay to nettles! He won't have to "pay" for that medicine later because it will only nourish his gut, not wreck it. The RN called me here at home to see how he was because she did not like the cough either. I cannot tell you what a great day of praise it will be when Samuel does NOT need transfusions! I look forward to that and we are certainly getting closer! I can feel it.
Please praise the Lord with us for another great day, great news and safe travel to and from the hospital. Now we get two blissful days to be home and pretend to be normal. The weather is improving here after several rainy days so I hope Samuel will feel like playing outside a bit and getting some of the healing sun. They come to check labs again on Thursday. Thanks so much for keeping up with us and for the lovely notes in the guestbook and in my e-mail. I love reading these especially when I get home from the hospital. There is a beautiful entry in the guestbook by Robert Kerr with a prayer that I have implemented into our prayers with Samuel. "Samuel in Jesus name we call for those cells which have become disobedient to God; and His creation plan for your body to now leave you - in Jesus name." We rebuke these cells and cast them out to the sea! They are disobedient to the Word of God and have no claim on Samuel's body. We rest in the arms of the Lord today. Much love.
7/22/07 - 2nd update
Samuel has had a good day. It seems as if the worst of the flu like symptoms may be behind us. He played all day and was in good spirits. Not as much sensitivity to the word no. He played with Anna today and actually played with his dinosaurs with Kaysha. He hasn't played with his toys, pretend play, for quite some time. Enough time for us all to stop and take notice. He actually sought me out to ask things rather than sitting on the couch and barking out orders to whomever was nearby. I did not see any temps above 98.6f today and tonight he was back into the 97's which is more his baseline.
So all in all, we had a very lovely day! We took Samuel to the store today with strict orders to sit in the stroller and not touch anything. So, it was his first outing since the relapse and everyone really enjoyed the trip. Just groceries, etc, but whatever. It is hard to be cooped up so long. We spent the afternoon cleaning because the house has become overwhelming to keep up on given the last few days with Samuel. Everyone helped out and things look much better tonight. Mark did his wonderful organizational thing in the kitchen and I spent all afternoon making Samuel's foods for the week. Pretty much making messes and cleaning them all up again. Mark and I had a lovely afternoon together just sipping coffee in between chores and taking in the nice day. We had a wonderful dinner that I cooked and it was delicious. Seems like I forgot how to cook since this all began and Mark has done a lot of the cooking lately because I just haven't been able to wrap my mind around dinner. So, it was nice to do something I enjoy for the family. Mainly, I spend time making so much "Samuel food" that I just don't feel like cooking for the family. Or there is just too much to do for Samuel that my mind cannot come up with any ideas That is really sad considering the amount of cooking I was doing two months ago. So, it was nice to relax a bit after the past week's events. Really nice.
Tomorrow we plan to head into the clinic, though they don't know it yet. I am certain they will be okay with it though. Samuel still looks okay and we don't see any bruises but tomorrow will be day six after transfusion and only on one other occasion were we able to get seven days off a transfusion. So, we will most likely need one and if he is actually making platelets, then we can celebrate that milestone with our friends in Tacoma. I am trying not to have too many expectations for tomorrow's labs and reminding myself that they could still be bouncing around, but I also am certain that he has dumped many a toxic load over the past few days. With him feeling so much better today, I am just believing that labs are going to continue to align to the Word which says Samuel IS healed. Praise God with us for a GOOD day. Praise Him for many more to come.
Special thanks to Lillian and Martha for your letters to Kaysha and Daniel. They will be mailing your notes soon. It took Daniel a little bit to get used to the idea of writing back to a "girl". Hmm. I don't know where this behavior comes from. They both enjoyed the postcards from the UK as well. They also received postcards from NY again and loved them. I can see how one could enjoy a post card collection. Thank you!
Also, very special thanks to our friends at thebabywearer.com for the many charity raffles held on our behalf. You will never know how much your support has helped and how much you have touched our hearts. Simply amazing. Thank you to all who participated, both vendors who gave products and people who bought tickets. Special thanks to the ladies who ran them. I have done raffles in the past and it is a lot of work. So know how much your efforts and sacrifices are appreciated. May God bless you all.
Well, it is bedtime! I enjoy sleep. It is a much needed break for my mind. Sweet dreams.
7/22/07 - 1st update
Yesterday, Samuel had a pretty good morning. He was significantly better than the past three days and enjoyed playing and interaction more. He took a very short nap and by afternoon, that low grade fever was back hitting 100.4 before bouncing around and down. We are pushing fluids but there is only so much you can do with a GI tract. I had the thought this morning that I should get IV fluids again for him if this continues. Last night, he went to bed with an elevated temp but we got it down by the time he drifted off to dreamland but woke me up at 4am with it again. I gave him extra fluids at that time and it seemed to make a huge difference because this morning he is happier than he has been in a very long time. I don't remember the last time he jumped in bed with Mark to play in the morning but he did. He also got up by himself and started a DVD without help. These are really good signs because normally he is independent and playful and lately he has been hard to pry off the couch. I cannot remember the last time he and Anna went outside to play first thing in the morning, but it has been a long time. He just hasn't felt like it. Anna seems better today, finally, so we are happy about that. Everyone else remains healthy, praise God!
Samuel still looks okay color wise and we don't see bruises thus far. But as I found out through many of the past lab results, it is impossible to gage platelets by looks and I am thinking that I might just have my mom take us to clinic in the morning for labs and a transfusion if necessary rather than wait it out here. One of his transdermal lotions actually dissolves bruises which is probably why we do not see any on his legs anyway. That is assuming we don't see a bloody nose or other stuff show up. Especially now that he is upstairs playing with his dad. They like to wrestle so I am sure he is using platelets to do that. I will also speak to the Onc about fluids to be done here. As things are now, Samuel's port is accessed the better part of a week so hooking him up to fluids would not be a big deal.
Off to see what the day has in store. Much love.
7/21/07
Samuel has had three very rough days physically speaking. His body is fighting hard. Yesterday, he had temps ranging from 97-100.7F throughout the day. Other than the temp though, he seemed to feel okay. No other real fever signs were present such as heartrate, breathing, cold extremities. Just his core was warmer, but the rest of him felt normal. I have never seen anything like it. The clinic asked me yesterday if I had considered what I would do if he got a fever. I told them we would support a fever as long as he had no alarming symptoms such as the ones I mentioned were absent yesterday. Obviously, he is not sick with something, his cancer cells are sick and dying and his body has to now deal with getting rid of them. Of the three days, yesterday seemed to be the most diverse in symptoms. He asked to drink a ton of water too which is a great thing as it will help cleanse these cells instead of allowing them to build up.
Earlier this year when we realized that Samuel could not tolerate any OTC medicine such as ibuprofen, etc. I set about learning more about herbs and their uses. One of the first things I made was remedies for fever. Little did I know I would be using them for this situation. That is only one of a ton of things I look back at now and see that God was preparing me for something such as this. I don't have to learn about it now in the midst of this, I just know what to do and the medicine is already made! Praise God for continuing to lead us where we need to go so we can do what we need to do. So I supported his fever all day with herbs to help him sweat it off and support his body in ridding the toxins and they worked really well. They did not totally mask the fever but they sure did support his body in a way ibuprofen never could because herbs are medicine, herbs are nutrition and herbs are food. I am very impressed. He also took several really hot baths which helped him a lot as well. He played a good bit of the day yesterday. My mom came over and spent the day here and he was in pretty good spirits most of the time. Well, other than when someone told him no, then it was immediate bawling. He is very very sensitive and you can tell he is just on the verge of a breakdown if he doesn't get his way. Usually, he takes things in stride and rarely cries so it is really obvious that he is just not feeling great though he tries to hide it. All in all, he has had no physical pain at all. No headaches, no bone aches, nothing. He just feels and acts off.
The last few days have been difficult in that I really have two sick babies. And they haven't been able to play together. Samuel was actually mad at Anna because she was still sick. She seemed a bit better yesterday so we have lightened the quarantine to them being able to watch TV together as long as they are not sitting side by side. That made them both feel better. Samuel's care has been very demanding physically and mentally and it has been extremely hard to change gears and do anything else. Mark and I talked about how nice the day will be when he reaches a clinical remission. Cells will be properly made again, and we won't have to check for color changes and bruises daily. He should feel a LOT better. Perhaps then we will only see labs once a week for awhile and we can get back to some normalcy.
Samuel slept great last night and is still sleeping as I type. His fever hasn't been back during the night so I will be interested to see what the day will bring. This cleansing crisis should not last forever so I anticipate seeing it improve soon. Well, he just got up and he is very happy and fever free so maybe the worst of it is behind us.
Thank you for your prayers! Much love.
7/20/07
I did not post labs yesterday because, surprise, they lost his blood again. So, I did not get them until this morning. With that said, yesterday we found out he has a low grade fever of 98-99f. His baseline is 97f so this was significant to us. Yesterday was much like the day before. Samuel had bursts of energy and large periods of exhaustion. He was supersensitive all day and I was concerned that he might be getting Anna's cold. The only other thing was that his body could be sick from lysis of dead cells. Flu like symptoms can happen when your body has to deal with lots of dead tissue and is to be expected with Samuel's protocol. We fully expected to see a WBC of 30k today. Obviously something has been going on. But I am SO PLEASED and full of praises to post these, the best labs we have seen thus far.
WBC 10.2 down from 15.3
Blasts 49% down from 66%
HCT 33.4
HGB 11.8
PLT 63k We will hopefully make it to Monday with these
ANC 0 No big surprise
LDH 422
Samuel's body has dumped a huge amount of cells in three days time. HUGE. 49% blasts is the best we have seen and 49% of 10k is so much better than 49% of 30k. Praises, praises to our God, our healer, our Savior. Samuel's body is at war today. It is working hard. Fighting cancer is HARD work. He is truly a warrior. All his chemistries look great as well. He told me he did not need platelets today because he is making them. I asked him how he knows that and he said, he just knows. Time will tell. Certainly, we are getting closer to that. Please join us is praising God today for this huge response. Also continue to pray that Anna gets well, she is doing better but not there yet. Pray that the rest of us stay well and that Samuel's body kill all this cancer quickly so he can start feeling better and enjoying his life again. Pray his platelets hold to Monday so we do not have to go to the ER this weekend to get some. When platelets fall hematocrit also falls so we will know more if he pales out again. We thank you for your love and prayers.
7/18/07
There is no doubt in my mind that Samuel is now making red blood cells. Yesterday as platelets fell, we saw his coloring fade a bit. Today, after an afternoon nap, he got up a colorful man, again. In two hours time, a huge color burst. Samuel has had a strange day today. He has had huge energy bursts and some very low times as well. It is very obvious that something is going on. I was thrilled to see the color burst again because his body is obviously working VERY hard doing something today. His poop has changed again to more watery but non acidic and I hope that means he is dumping dead cells like crazy. He also had orange pee again which I have seen from time to time, no need for alarm. Tomorrow will tell us more about what is going on in his body. He has slept a lot today. A lot more than usual. He got up at 8:30 which is very late compared to his usual 6am risings. He napped around 2-4pm, which I never expected him to do since he slept in. And he asked to go to bed at 9pm which is really unusual as well. So I hope and PRAY that we see labs tomorrow that show his body lining up with the Word of God. I know it is working hard. Fighting cancer is HARD work and he has given it everything he has today. He is fully aware that his blood is not working right and we remind him several times a day to tell his body to work and to pray. I know he has a will to survive so I am capitalizing on that in the natural realm as well as the spiritual realm. He is so much like me that I just know mind over matter will work with him.
Anna is still sick and quarantined. So far no one else is sick and my whole house reeks of Lysol because anytime she leaves her area to an area where Samuel is, it is sprayed. I pray she improves tomorrow. Today sounded like she was coughing up stuff and so I think it is breaking up. I have been tired all day as well. Seems like I have had a lot of tired days in the last week. My body has always seemed to mimic Samuel's during times of physical issues though and as he improves, I do too. It is so intricate the ways we seem connected, to think my body would mimic the symptoms he has. I guess that makes it easier to troubleshoot, or to know when troubleshooting is needed or not needed. It is such a powerful spiritual connection at times.
Tomorrow is the four week mark of his relapse. Over four weeks and counting with no ANC and no problems. God is taking care of us, God is taking care of Samuel. Each day seems to bring something new and it is obvious that things are changing in his body by the hour, sometimes by the minute. It would be scary without God's peace that passes understanding. We rest in that but sometimes remind ourselves minute by minute who is in control here. We praise Him and thank Him that NOTHING is impossible for those who believe in God. Nothing is impossible with God at our side. I thought about that a lot today. We are going to save Samuel's life by the hand of the ultimate physician. We will not stand in the way of God's hand over Samuel's body showing the world yet another miracle. We believe that Samuel is a miracle and God is using him. I am so thankful that I was raised to know God from birth. We call upon Him and trust only Him to carry us through to Samuel's complete remission and cure, and then move on with our lives. Praise Him for that tonight. Praise Him for peace that passes our understanding. Much love.
7/17/07
Just a quick note to LYK that today's transfusion was uneventful. Just the way we like them. I hope we can get a week out of these platelets...but I am not holding my breath. Samuel has been running around like a crazy boy and it seems like he isn't as colorful today so probably used up enough platelets to lose some of his red count. I will be interested to see what tomorrow holds and the day after. Will he pink back up? Hope so. I think his HCT is probably still in the normal range even so. His "normal" is around 33-34 so seeing him at almost 37 hasn't been something we have seen since he had an ileostomy.
We received a card from the ER RN who tended to us July 2nd. She was very touched by Samuel's expressiveness and joy and said that she learned that you can find joy in any circumstance from Samuel. When Samuel feels good, he is happy. No question. And whatever comes to his mind, he says. And he doesn't care who hears it. Just ask the RN's today who were ROFL about him saying he was going to fart. Then he said that "I" should fart. "Go on, Mama, fart." My mom just about fell out of her chair when he said that. The RN said that we should fart outside because it would be too stinky and she plays right along with Samuel trying to be serious and then ROFL at the desk outside. He is not a quiet child either so everyone in the infusion area heard him. They all thought it was hilarious and I really wondered if my mom was embarrassed to be in the same room with us. I figure that Samuel is just making up for all those months where he could not talk at all and given the choice, I would rather hear what he as to say. Anyone who has had as many poop issues that he has and still thinks farts are great can joke about it as much as they want.
Well, let's just say that Samuel makes an impression wherever he goes. But going back to the card from the RN, this is the first card I have ever received from a caregiver who apparently sought out our info over a week later. It was very touching. We think Samuel is very special, but it is always nice when others see what we see. And she was especially good to Samuel as well. I did, however, get the impression that everyone was saying their goodbyes as we left. As in, it was the last time they would see him.
Samuel is happy because he plans to live. And when he dies, he knows he is going to heaven to live with Jesus, tells everyone just that, and plans to see Steve Irwin first thing. So he has no sorrow, really, doesn't know he is sick. He doesn't feel sick. What I like so much about his treatment is that while it is a strong stage four treatment, he feels better on it. He has energy, feels happy and is more himself than he has been in a long time. And if you knew Samuel even as an infant, he was always a clown. So it is no surprise that he has everyone laughing so hard at his antics. That is who he is. Mark says, "Pooper the clown." He gets it from his Dad.
Tomorrow we get to be home in peace, pretend we are normal for a day. No one coming over, just us. Anna is still sick and quarantined. Samuel was really sad to see her leave today because he misses playing with her. She misses him too. I have tried to have Kaysha take care of Anna for the most part so as not to expose myself. But tonight she got in the tub with me and I washed her hair and combed it out. She liked that. So far, no one else is sick and we are working hard to keep it that way. Pray she gets better quickly and no one else gets it. These kids really miss playing together.
Please pray for platelets to come back, red blood to stay and of course ultimately remission. Knowing your child has cancer active in their body sucks. You start thinking about things like, what if you get into a car accident and they bleed out. He has so little platelets and over half of the blood is cancerous. He would just die. He cannot play hard they way he wants to because of low platelets. He deserves to be a boy, have fun, and have quality of life. God needs to tend to this matter now. We are doing our part.
Thanks to Nellie for the letter to Samuel. Hey, I love Wonder Woman! We really enjoyed your note. Some of the most precious gifts we have received throughout this entire journey was cards and letters via mail. I have everything in a box for Samuel and continue to add to it. It is amazing how many things love covers and I have so many precious letters which were written to me as well. Thank you for taking the time to write Samuel a letter he can have forever.
Well, I am really tired so this is it. Samuel, my little energizer bunny does not even seem tired tonight. Thank you for your prayers. Much love.
7/16/07
First, we have a major prayer request. Somehow, some way Anna got a cold. So, she is sick. I have spent all day quarantining kids to different parts of the house in the hopes that Samuel does not get sick. This is just another one of those things we do not need right now. So please pray for this situation. Anna needs to get better, and it needs to stop with her. Samuel getting sick right now would not be good.
With that said, we had a nice weekend generally speaking. I was flat out tired both days and it was hard to really get anything accomplished. Today I feel better thankfully. Samuel has been just fine. He has seemed tired a bit off and on over the weekend but in pretty good spirits. This morning he got up and looked totally different. By that I mean, he had color. LOTS of color. I asked Mark if he noticed and he did. Kaysha does the tongue test with him daily and noticed a huge difference today. So we were pleased and send praises to God but not surprised to see that Samuel's HCT has went up a lot.
Today's labs.
WBC 15.3 down from 30k
HCT 36.6 up from 32
PLT 37k getting these tomorrow
ANC 0 No big surprise
HGB 13.1, WOW!
Blasts 66% apparently these are up but the WBC is down so it is relative
LDh 488
Our Onc is hesitant to say whether Samuel is actually making red cells, but his counts Friday were 32 HCT and now 36.6 so that is huge considering it looks like it happened overnight. His HGB being up is great news as his blood is now well oxygenated and less fun for cancer cells to live in. All the weekend cultures were negative, both on Samuel's blood and the blood products so Friday's episode is being called an allergic reaction. It really made me rethink what I take with me in my purse. So, now I have ample supplies of ginger, nettles and silver so I am covered for nausea, allergies and infections. Samuel spent 12 hours paying for the benedryl with the butt oozing type of diarrhea which means no one slept Friday night. Probably why I was so tired on Saturday. So I am giving him a good size dose of nettles tomorrow before the platelets because I don't want to see that ever again.
I spent some time talking to the support person for Samuel's protocol today. Now, I have been told TWICE, once by the Onc and once by the support person, that Samuel's bone marrow will NOT produce red cells or platelets until the CANCER which is attacking and destroying the marrow is stopped. Both told me this in the last seven days. So seeing Samuel's counts and his face today are really positive signs that we are heading in the right direction. Praises to God!! Now, he needs platelet recovery because living from transfusion to transfusion sucks. But I am just overjoyed tonight in thinking that we might be past needing red blood because this is a huge key in his body killing the cancer. Keeping the cells oxygenated with good red cells is a must. Based on his counts, it looks like his body took a break from blasts to make reds.
I was again told today that it could take several months for the cesium protocol to achieve a clinical remission. Samuel is on a very low dose and it takes time for this to infiltrate the cancer cells weakening them, making them sick, eating their protein shells and allowing the white cells to identify them as threats and killing them. It seems obvious that we have stopped the progression of the leukemia, which left untreated equals death. The blast count overall keeps slowly going down. If Samuel is now making his own red cells, then we have some marrow recovery which means that the cesium is now in the marrow. I am upping his dose a little bit to see if we can kick start this marrow into making other cells as well. An interesting thing we found out about Friday's labs was the differential showed only 47% blasts when his WBC shot to 30k. So, his good cells almost tripled in response to an immune reaction. We need that kind of response to the cancer and it seems that right now, his cells are just somewhat happy to live together, not yet getting that these blasts are big threats. And again, we do not know how many of the blast count are live vs. dead cells spilling out of the marrow. Cells killed in the marrow have to go somewhere and the only logical place is the blood stream. So, we continue to wait, watch, pray and expect these labs and Samuel's body to line up with the Word of God which proclaims Samuel is healed and NO weapon formed against him shall prosper. We stand firm on this and thank everyone who is agreeing with us in prayer and expecting a complete turnaround and restoration to our family. This has been God's promise to me and I will accept nothing less.
So tomorrow we go in for platelets and Thursday we see labs again. I am praying for platelet recovery and red blood to hold proving it is being made. I believe it is. Platelets going down has meant red blood also goes down and we are seeing the opposite. Samuel needs to make platelets. Please pray for that. And after that comes an ANC. Obviously, remission is a priority as well, but at this point, I will be satisfied with not living from transfusion to transfusion because I know that means progress no matter if blasts are present or not. I told my Onc today that the next time both of us are in clinic, we need to have a meeting to talk about Samuel's life. Not death plans. I guess the appt made for us last week was a fluke. Probably like Friday the 13th. It was not on record anywhere. Hmm. Anyway, the Onc seemed pleased to have a meeting to get a better idea of what exactly we are doing and what to expect. As you might imagine, they just don't know what to make of the labs and seem baffled when numbers go up and we are not phased.
Please praise God with us tonight. Thank you for your prayers and love. Special thanks to Angel Sandi for the goodies for Samuel. He loved the coloring book so much. Much love.
7/13/07
Friday the 13th......no, I am not superstitious. Did not even think about it for a second....
First off, thank you to the kind people who sent me lovely e-mails of support today. It was very very nice to come home to those. We appreciate your thoughts, love and prayers so much. Second, well, I am SO THRILLED to just be home. You have no idea.
Today was supposed to be simple. A happy day. Go in get blood, get platelets, go home, enjoy the weekend, etc. etc. And it started out that way. Samuel got his blood. That went fine. He went from grouchy to pretty happy. He went from yellow to pink. Then he got his platelets and again, it was uneventful. I was happy because he got a bloody nose again last night which made me nervous. And right as they were flushing the last of the platelets through, he started complaining that his throat was closing up, his breathing changed, he got chills, his temp and BP went up, he started feeling nauseous, and his head hurt so he started slapping it. All in a matter of minutes. He was fine, then he was anything but fine. They called our Onc who came immediately and ordered blood cultures, CBC, chem panels, etc and then suggested that Samuel obviously had a bacterial infection and said he was going to order antibiotics. He could have gotten it from the blood somehow but everyone seemed to rule out a blood product reaction because it happened so late. We talked to the Onc a bit more and benedryl was given just to "see" if it was a reaction to the blood products. Meanwhile, Samuel was miserable and I can tell you that I did not need that adrenaline rush AT ALL. Mom and I immediately laid hands on Samuel and rebuked anything that might come against his body. This was NOT what he needed. And just as quickly as the symptoms set in, suddenly they reversed. His temp only hit 99 before going down, BP was 140/99 and then went back down, heart rate only 101, then back down, chills left, sweat broke out and suddenly he was breathing fine again, etc. Praise God for that. Antibiotics arrived and we refused and the Onc agreed to hold off given that symptoms reversed. CBC comes back and the RN attending us all day told me his WBC was 30k, really high, did I know normal was 5-15? So I had to explain to her that I was aware and was not surprised because he has active leukemia and obviously Samuel had an immune response so it would go up. She was shocked... of course. I was shocked at how quickly things can get out of control and how quickly my Onc could assume it was bacterial and jump all over antibiotics. I know he only wants to help Samuel and I don't blame him given what he sees on a daily basis but I got the impression that they have just been waiting for this to happen, shocked it hasn't happened sooner. Samuel's vitals went back to normal and all talk of us spending a night died off thank God. I was sitting there thinking if he got anything bacterial, it was from the blood, so I am so thankful that whatever it was, it is gone. Tonight he ran around here like a new man which was great to see. I was left with the impression that the Onc thinks we will probably go inpatient this weekend though. I just love when you go to the hospital to get better and you get sick instead. Samuel is fine and of course we got home and covered him with every herb we have as well as silver just for good measure. So far I haven't seen any toxic effects of benedryl but we will see what the next 24 hours holds. He hasn't had any since Feb so hopefully that break will be enough to not have GI issues from it. It was the lesser of the two evils....abx vs. benedryl. No contest.
Okay, so that heart attack over, we move on to those labs. I told the Onc that that WBC does not bother me at all and I would expect it to go up given Samuel's huge immune response. Obviously he has some good cells working overtime. Make no mistake, his immune system responded to something hard and fast and praise God, it resolved. So the Onc said that if I wasn't worried, then he wasn't worried. Hmm. I am sure I will hear about those cultures one way or another though. Samuel's HCT was only bumped to 32 which is just below normal so that was irritating and even worse, his PLT was only 65k after transfusion and I really wonder if we got a bad bag. We shall see Monday. The Onc thought that Samuel holding platelets a week means he is making some so that is good news for sure. Somehow someone make us an appt with the Onc on Wednesday. I did not ask for this so I need to find out who did. We talked a bit today about Samuel's protocol and what to expect. This was the conversation I wanted to have last week but they wanted us to make death plans instead so I think I will keep the appt just to educate the Onc a bit and also ask him not to freak out next time something comes up because the deja voux factor is just TOO much for me to handle with everything else. As Mark said later, all he could think about was going in patient never to go home again. This just cannot happen.
So I want to say a huge thanks to our prayer warriors. You never know when your prayers are heard at just the right moment. God heard us today.
Something I found out that is rather disappointing is that frozen breastmilk has no live cells. Therefore, no neutrophils live once the milk is frozen. A precious lady donated her milk to Samuel and while it is filled with vital life giving nutrients, the cells he most needs are gone. So we know why he is not getting any immune bump from the milk. I would need someone close to us to donate fresh milk to get neutrophils. Neutrophils are the immune cells which fight off infection that Samuel is not making at all currently. This is why everyone jumps to conclusions whenever a major immune response occurs. Samuel asked me to ask Jesus to make my milk come back. Hmm. I called my MW to see if anyone she knows would be willing to donate fresh milk but haven't heard back. I honestly do not think I can sustain milk given my current lifestyle. It was one thing with a newborn who was nursing all the time but with no one........well, I think Anna would actually be a willing participant, but I digress.
Well, that is it. I am going to try to sleep this day off and forget about it. Much love.
7/12/07 LABS UPDATE
SLOW AND STEADY WINS THE RACE>>>>>>
WBC 18.8k down from 30k
PLT 24k we got 7 days on a transfusion!
HCT 23 dropped from 26
ANC 0 No great surprise
Blasts 61% down from 64%
LDH 439 down from 480ish
Other things to note, all chemistries are in balance and that now includes liver functions! Praise the Lord, I have been working on that. Samuel's liver is not being overworked and is doing a great job. His WBC is down again and so are the overall amount of circulating blasts. If you look at the trending, the WBC seems to surge an then his body purges blasts. Overall, these look better than Monday. Samuel will get blood and platelets tomorrow so we are in for a long day. But I am thrilled because I just know he will feel better overall and this boost will give his body the ammo to really dig in and kick out those blasts. So, we are excited to see how much the new blood will change things both in how he feels and how his body kicks into high gear. I will be so happy tomorrow afternoon. A huge thanks to those who donate blood products! You are saving lives and allowing Samuel's body to fight. We will see labs again Monday. Mark and I have just resigned ourselves to the fact that this could be an up and down thing each time we see labs but the progress is going in the right direction. Overall Samuel is doing great considering he has so much cancer circulating. His spirit is strong and so is our resolve.
I read studies every day from trusted cancer sites. One thing I read today that I already know but wanted to share here is that the one thing that anyone can do to stop the spread of cancer is diet. I have been saying this for years. Either you are feeding your cancer, or you aren't. This was the first thing I changed for Samuel as soon as I realized we might have a problem. And his overall diet wasn't bad before considering, but the ph of the foods was where the issue was. The more unprocessed a whole food is, the more alkaline. Cooking whole foods results in more acidity and while this healed Samuel's gut and was a necessary change, A total raw diet with a weakened GI tract is very irritating and a recipe for disaster. They are just too hard to digest when your GI tract is not working. Cooked whole foods heal the gut over time and obviously that worked well for Samuel, however, it allowed his cancer to come back. If Samuel had relapsed at any time after his ileostomy was taken down, he would have died because we would not have been able to do what we are doing now. His GI would have never been able to handle it. Moving back to a whole raw food diet made an amazing difference immediately in his blasts "blasting off". Tons of green food. Another thing I realize now is that it is easier to keep cancer in remission with diet because obviously, that is what we have done. It is more difficult to get cancer back into remission with diet alone. You can, but it is slow. If Samuel did not have cancer of the immune system, diet alone would be acceptable with a stage 3 treatment, but we need that immune system to come back so took a step forward into radical stage 4 ph therapy. If we have not been so radical with the diet change immediately, we would have seen a lot higher WBC's and that would mean more overall cancer load. I have been told that it could be 2-3 months of this roller coaster of labs before things even out. It is not good for a body to rapidly get rid of all these cells because the liver has to then work overtime. Seeing Samuel's liver functions come into alignment is a good thing. While I would love to see those blasts disappear overnight, I know that would be BAD for Samuel. So, we will take slow and steady. It will be a great day when he no longer needs blood products.
The Palliative Care MD sent me a note that she wants to meet up with us so I can teach her more about what we are doing. How cool is that? She has another mom she wants me to talk with as well. So, tomorrow could be an interesting day. My Mom is taking us to the hospital tomorrow and the rest of the kids will go to Mark's parents so they don't have to sit in a 12x12 room all day. Samuel is so excited to be going back to the hospital! Oh, please! The RN today asked when our next appt with the Onc was and I said that we did not have one, and do not want one. An appt with him would mean something is wrong so I will pass on that.
So, praise God! He is the ultimate physician. He is who we look to for everything. Glory!
7/12/07
Yesterday, I was really tired. All day. Seems this adrenaline rush lifestyle caught up to me. Thankfully, today I feel better though am finding it hard to get motivated to clean house before the RN shows up. The kids are great, the get up and ask me what they need to do first. Course, it is money motivated but hey, that is a good thing to get some work ethic early in life. Daniel does really well helping out when he sets his mind to it. Kaysha, however, still needs work on her quality control. They whine a bit about the "babies" messes and I remind them that they did the same thing and the only one around to clean up after them was me so this is payback. They are good kids.
Daniel received a postcard from NY, thank you! I don't think it was signed but he hung it up in his room. He thought it was cool. And Karen K, thank you for the "letter" that I received from you. God bless.
Samuel is doing well. Yesterday after his nap he really perked up a lot. I was seeing the effects of anemia starting to manifest. I don't know if he is making red blood and that helped, we will see later. I did send our Onc a note letting him know that we want Samuel transfused if this anemia hasn't changed. He agreed so that will happen tomorrow if we don't see a significant increase in the HCT today. Low red blood means low blood oxygen levels and cancer thrives in that environment so I want to nip this one now. I don't see any new bruises or evidence of low platelets. We do a full body check several times a day. Samuel has gotten a few minor scrapes in the last days and I cringe every time since this is just another way bacteria can enter his body. Anna was playing with him in the tub yesterday and accidentally kicked him. Apparently her toenails need cutting because it left a scratch but no bruise. So, we are really excited to see how those platelets are doing. Samuel also developed a small pimple on his leg which we are watching to be sure it does not infect. Part of his protocol states that dead cells can exit the body through ANY orifice including skin and if they don't get a free clear way out, they can become zits. So, I hope this is another good sign but at the same time, would prefer not to see any more. He has had no bone pain since the weekend and has never gotten a headache.
Today marks three weeks we have known about the relapse. I guess time flies whether you are having fun or not. Three weeks with no ANC, more than likely four or more. Samuel remains fever and infection free, wounds healing like I would expect, etc. So we are praising God for that. Meanwhile, he is covered with tons of antiviral, antibacterial, antimicrobial and antifungal herbs. Praise God for His medicine. Samuel could be without ANC for awhile, weeks or months, we do not know. We are just playing it safe keeping him away from strangers, and keeping everyone else away from sick people or crowded areas. It is a shocking life change given that we haven't had to do this in years. Once again, I haven't been anywhere other than the hospital and our weekend outings safely away from people. It sucks but we will do whatever it takes to keep Samuel free of anything else which would burden his body at this time. It has an incredible job to do without any added burdens.
Home health just called and they think they are coming out tonight which would be completely unhelpful if Samuel needs blood.....so I guess I have some phone calls to make. Thank you for your continued prayers and support.
7/10/07
For those who asked about the Benefit Fund, here is the info. SAMUEL'S BENEFIT FUND INFO
If you would like to make a tax deductible donation to help us pay Samuel's medical expenses not covered by insurance, he has a benefit fund at any Wells Fargo Bank. Any branch nationwide will be able to find the account under Samuel Backus Benefit Fund. This is a donation account and they will have to look it up for you. You do not need the account number, just his name. You will receive a receipt for tax purposes. Thank you for your support.
7/10/07
Today is the 7 week mark past Samuel's last sedated dilation. The next one is or shall I say WAS set for next Tuesday. I just canceled it. Obviously, we won't be making it with the counts as they are. It just isn't worth the risk. Thankfully, his butt and anus look really good So I pray I was right when I said that I think we are done with these because as things stand now, we are done with it for awhile. I talked to the RN from the GI office today and told her that I would call her back when Samuel reaches remission and we can pick up then where we left off. I am certain I know what they are thinking though, and I don't care. Let me make it clear to you that we DO expect remission and we DO expect Samuel to prove everyone wrong as he has always done. I know for a fact how many people we talk to and deal with that have written him off and I don't care. We believe. So his anus and entire GI tract have to behave now because they are the place where all his good food, herbs and supplements are getting absorbed. A lot of what I have now can also be massaged into the skin if we run into GI issues for for now, things remain great. Samuel's body has adapted well and his wounds are healed.
We actually got some good news yesterday, not Samuel related, but useful nonetheless. Mark's job requires him to join a union and that union is one he has previously been a member of. So they are waving the $150 initiation fee and his qualification for benefits is based on his original hire date back in 1998 with a different company. By those rules, our medical benefits should kick in for August. And by the very latest September. Originally, I was told we would have to wait six months which would put us into December so this is great. All the kids need their eyes checked, new glasses again, dentistry work, etc and of course Mark will have to eventually make a decision on his tooth that he had a temp repair done on. I think we may even qualify for better dental coverage based on the previous use which means we will either have 90 or 100% coverage there. Note that we have been without medical for the past four years so we are praising God for this very needed blessing.
The clinic finally called with the rest of yesterday's labs. I swear that everytime they send off Samuel's labs, something happens and half of them get lost. Well, his liver/kidneys remain fine with all electrolytes in order. His LDH is up to 480 or something like that from 398. I imagine with the WBC jumping around it only makes sense for this number to go up and down as well. The last time his LDH was near this number, at 471, his WBC was 13k and 57% blasts so based on that, his body had more cancer activity with a lower good and bad WBC. Now his WBC is triple that, he has double the good cells and overall tumor activity is comparable to a week ago with a lot lower "good" counts. In my mind, this is still good news because he has a good WBC of approximately 13K whereas before his good count was only about 5k which is getting low for the job these cells have in front of them. He also has a lot more blasts with a WBC at 30 than he did at 13K with the LDH similar so far less of them are theoretically active. This is just my accounting brain kicking in analyzing the numbers for the bigger picture. We are just 8 days into a protocol which significantly stimulates the immune system and that means for Samuel, both the good and the bad. In my mind, I think it should stimulate all the cancer right here and now and kill it for good. THIS IS WAR!!!!! So, we won't know more until Thursday which is fine because that means two days of normalcy, whatever that is, and not thinking about it as much. Mark deaccessed Samuel's port last night and it did not bleed a drop. Not one drop. That is so awesome! I think I will be praising God when the dumb thing refuses to draw just because we know his platelets have arrived.
Samuel has been playing all morning and is having a great day. We will take each day as it comes and cherish it. God knows what He is doing and there is peace, rest and assurance in knowing that. We send you our love, thanks and pray God blesses you all. Keep the prayers coming. Let there be no mistaking, Samuel IS fighting for his life here.
7/9/07
Counts for today...don't have them all.
WBC 30k Doubled from Thursday
HCT 26.1 HOLDING!
PLT 71k Can we say WOW!
Blasts 64% Whatever..last time his WBC was 30k, blasts were 72% so this is better
ANC 0 No big surprise
I don't have any chemistries and won't until tomorrow but Samuel doesn't need any blood products and we are praising God for that! Those platelets are starting to hold!!!!!!! And the HCT is still holding. It doesn't matter what the WBC is doing because it is not negatively affecting the other counts. The word is that we will now wait until Thursday and see what is what. Our Onc agreed to give him blood if the HCT does not go up but wanted to hold off until Thursday seeing as how the PLT are holding. Samuel's body has A LOT to do and I know for a fact that a boost on HCT would help his body focus on making and killing the needed cells so I might be having a conversation with the Onc later this week. But for now, we are pretty pleased. Samuel feels great and has had a wonderful weekend. He has had some bone pain over the last two days and it is my hope that it is because the treatment is now killing cells in the marrow, or his marrow is making cells. Either can hurt. The only other reason for bone pain is of course cancer getting the upper hand but we rebuke that right here and now and say that these cancer cells days are numbered. We know who is in control of this situation and we continue to speak life, and believe Samuel is healed and those numbers will manifest in God's time. Meanwhile, Samuel is not being slowed down by this at all. Praise God.
