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 excite
