7/7/07
I did not update yesterday because we literally came home and went to bed as quick as we could do so. You simply cannot imagine the stress level this kind of life carries unless you have lived it. I don't know anyone personally who has had our experience so I doubt that any comparisons can be made. I don't update when I am tired because I tend to be more negative. So, we all got a wonderful night's rest and feel much better today. Samuel is once again the Energizer Bunny running circles around everyone. He might look slightly more pink today but it is hard to tell.
He got more precious platelets yesterday afternoon and we met with our Onc who arrived at work yesterday pleased to see Samuel on his schedule until Mary dropped the bomb. So, Mary, the Onc and the palliative care MD came to infusion and spoke with us while Samuel was getting platelets. No labs were drawn which was fine with me because it is almost easier to not know for the time being. Samuel will be able to get blood next week if his HCT does not start to climb. The Onc feels like he is making some red cells, enough to hold, but possibly won't make enough to build this back up until the blasts are a lot lower. So the red blood will help his overall mood a lot. We all feel like platelets hold five days so hopefully Tuesday, we can get in for both. The Onc also does not think he will make platelets until the blasts are either very minute or gone. And even after that, after a blast crisis, the marrow goes through a shock period where it just doesn't make anything. We remember this well. Samuel's marrow was stimulated with GCSF back in 2004 because he had no cells being made for so long and too many infections. I handed them the sheet of all Samuel's supplements, or should I say three pages worth, and they are going to enter this verbatim into the computer so it is accessible for anyone who may treat him in the future. I am sure that everyone is skeptical about alternatives at this point, but they could not argue with his labs which show something is going on. So we wait. Monday should tell us quite a bit more about how this is progressing. Samuel has been peeing some toxic pee over the last few days, pee that burns his butt if he has an accident in his bed. So I am certain he is dumping cells like crazy again. Monday also marks a week that we have been on the alternative protocol. From my research, the two week mark can be very telling but I have been warned that we could be dealing with blood issues for a few months before things straighten out. It is my hope that Samuel, being a child, and very sensitive, will respond faster. We are pretty resigned to the fact that he will be platelet dependent for awhile yet. And I also found some studies which show that ANC does not recover until 4 days after platelet recovery. Of course this is based on chemo destroying the marrow first so I am not sure how that will bear on Samuel's body. Going on looks alone, he is doing great. Even the doctors had to agree, this is not slowing him down much at all. So we praise God for that.
We filled out an info sheet which will also be entered into the computer for all to see about our wishes and Samuel's needs. Things such as NO antibiotics unless it is life and death and then it is at our discretion. No chemo is to be offered or administered, ever. Helpful things like Mom knows this kid better than any doctor. I know him better than myself. Only God knows him better. Other helpful info such as Mom is legally blind, not crazy. It is just a subject which does not come up so if it is one of the first things they read, this might make a difference. And they still want us to fill out the DNR form. "Because he has active leukemia and you never know what it is going to do." This document is not legally binding for children under 18 but they still want it on record because it is most helpful to the staff. I have it sitting here on my desk to my left and it annoys me. Yes, if his heart stops beating and he is not breathing, DNR. He has suffered enough. I doubt that his death will be that easy. If God decides to mercifully take him suddenly, we will not attempt to stop it. No antibiotics is on that form. That is a no brainer. How much care should he get? Minimal, some, or full treatment? Should we feed him? Should we hydrate him? Isn't this all dependent on the state of his leukemia? I am still of the opinion that this is all crap. Perhaps it is a coping mechanism. Perhaps it is faith in God that I won't have to make these choices. I will go with the latter. And topping that off, I was handed a form called "My Wishes" which is for Samuel to fill out, as if, about how he wants to be treated when he gets sick enough to not be able to speak for himself. And how he wants to be remembered if he dies. This one flat out pisses me off. This is a child who has had two glorious infant toddler years which he will NEVER remember. Then three years of hell on earth which he remembers a lot of. Then a couple good months and now this. Which part of this should we remember? "Please forgive me for anything I said or did when I was sick that hurt you." He has been grumpy for years because all he has done is suffer and hurt. He takes the brunt of it out on his brother and sisters. Are they going to remember him always being mean? Will they remember the few times when he was feeling good and a nice boy? "When I am gone, please take care of my things listed below." "When I feel bad, these things listed below make me feel better." "When I hurt I do not like............" Here is the most awful part. Samuel should have died in 2004. IN fact, for the three comatose months, he seemed dead. His body was there, but he wasn't. We have already gone through this. I know exactly what he wants when he hurts.......me. No one else. He hated everyone. And there was not enough pain relief in the hospital to touch his pain. All those things he went through because of chemo could happen again if leukemia takes over and we will have to live that nightmare again. I am UNWILLING to allow this to happen again. My family cannot stand by and go through this again. I do not for one minute believe God will allow this. So, these two papers will remain on my desk for the time being until I clearly see that I am wrong about God's plan and God's Word. God holds us, God keeps us, God has led me straight through the most rocky steep terrain and at times I felt like I would drown in sorrow and He picked me up and put me back on my feet. As usual, we are the only ones who have faith in our son's will to survive. We are the only ones who believe God has kept him going this long, He will continue to keep him going now. Because of my disability, I have spent my whole life on the side of things where people say "you can't." So, I am used to the sorry glances, shrugging shoulders and sympathy sent. I don't care. I have never been a quitter and when someone tells me I cannot, I prove them wrong. That is my intent. With God on my side, failure is NOT an option. That is where I stand today. NO weapon formed against us shall prosper. Don't get me wrong, our medical team is backing us and supporting our choice 100% because they have nothing to offer us. That was said point blank. NO surprise. We already know that. They were nothing less than superb to us and I can guarantee you that the palliative care MD will have the butt of anyone who goes against our wishes. Like me, she has a very strong loud and unyielding personality so we are covered on all sides. But at the same time, they have seen too many negative outcomes to hold out much hope at the moment.
Mary asked how much this is all costing us since insurances does not cover alternative treatments. So far we have dropped $1500 on supplements which will get us one to two months down the road before needing to be replaced. Samuel will need to remain on this treatment for 6-12 months and then transition to a strong stage 3 treatment for another year. Then remission treatment. So we are into this for the long haul. Mary told me to post on this site that if anyone know of someone with income they need to dispose of for tax purposes, to have them consider donating to Samuel's Medical fund. I will post account info soon and you will be able to get a receipt to use as a charitable donation for tax purposes. So there, Mary, you will be proud of me. I put this out there.
We thank everyone for their prayers, love, notes and financial support. We could not go through this without knowing you are all standing with us for Samuel's life.
7/5/07
See labs update below for today's counts.
We meet with our regular Onc tomorrow. Today marks two weeks since we have known about the relapse. To be quite honest with you, when we found out, and then went in for blood products on Friday morning early only to find out his WBC was then 52k, we honestly did not feel like he had two weeks to live. It seriously felt like we were planning his funeral on that day. As Mark said, "I cannot believe we will have to let him go." And I said, "After all we have been through, got him through, everything was finally getting good, and now this?" We both decided at that point, that we were NOT giving up. And we will not give up as long as Samuel has quality of life.
One of the best "side effects" of the treatment he is getting currently is that he actually feels better immediately when he gets his medicine massaged into his skin. He is smiling, happy, playful, doing what he normally does each day. The only difference is that I am worried about his platelets which absolutely sucks. We have seriously never had to worry about platelets because the only time he needed them was early in 2004 when he received the devastating chemo. After he recovered from that assault, he never needed platelets. So, we really need your prayers for platelets to come back....soon. And I think that means that blasts need to go down a LOT farther for this to happen. If his HCT doesn't pick up by next week, I am going to see if he can get more blood transfused so that he has more oxygen in his blood and more energy/color. If the red blood is simply holding but not producing, I would rather see it in the 34+ range. 26, while adequate, is not going to be that way for long.
Two days ago, Samuel fell off Daniel's loft bed. All the way from the top to the floor. He missed the steps. It was awful! I was glad he had just gotten platelets but you can imagine that he has several new bruises. Thankfully, he was okay, but very sore. It knocked the wind out of him and he told me later, "I could not even call you when I fell." It reminded me of 2004 when he could not even call me at all. So, that trauma over it is no big surprise that he will need platelets tomorrow. Tank him up for the weekend so that we may think about something else for awhile.
Yesterday, Samuel had a great day. He was even more himself. His body seemed to heal overnight, both his butt and GI tract overall are just about perfect again. He has a few minor cuts on his face which healed up nicely too. He ran around like a crazy man all day yesterday, did not take a nap, and missed the fireworks at night because he went to bed early. He wonders today, when we are going to do the fireworks. We took some fireworks to Mark's work so he could do some for the kids. It was the first time I saw the inside of the place and met the kids. They enjoyed it a lot. We both remember being stuck at Children's and watching all the kids dragging their IV poles up to the fifth floor hoping to see something. So we wanted to give the kids Mark works around something special. Samuel had fun playing with the toys there and did not care about the fireworks at all. Last night was especially fun because the entire neighborhood must have spent a fortune on mortars and lit up the sky for several hours. It was a really nice break from reality. Kaysha and Daniel lit all of theirs off and I think this is the first year they stayed up with us to enjoy the sights. We all had fun. I missed Samuel who was sleeping though.
So, we will see labs tomorrow again. We both really dread the anxiety of waiting. I am working minute by minute on not allowing myself to worry. As you can imagine, it is difficult waiting for a piece of paper which tells the degree of life in your child's body. It occurred to me today that life and death are in the palm of God's hand. God's Word should always be my final authority on Samuel's body. And it says he is healed. Our anthem, NO WEAPON formed against us shall prosper. I believe that God holds us near and He has a plan. I rest in that. God uses every bad thing for good and I know He did not get us this far to NOT bring Glory to our situation now. So we wait, we work, we pray, we believe, we speak only life into our situation and we speak life into Samuel's body. We refuse to believe anything that does not line up with God's Word. Jesus has not died in vain for Samuel. God is my father. God is also Samuel's father. Samuel's heart beats because of God. Samuel remains infection free because of God. Samuel remains on this earth because of God. Cancer, bow down. YOU are not bigger than God. God has the final say. May we continue to find wisdom and direction in helping Samuel live out God's plan. Rejoice with us today, for this has been a day of good news, good spirits and glory. We want to send love and thanks to everyone who holds Samuel and our family in their hearts and prayers. Keep praying for Samuel's marrow to wake up and kick out that leukemia for good. Much love.
7/5/07 LABS UPDATE
Continued praises!
WBC 15.6k down from 30.5k
65% blasts
PLT 30k will get more tomorrow
HCT 26.5 hanging in there
ANC 156
Lymphocytes 24 normal
Monos 10 - UP FROM 0 which is great.
Things have changed again and moving in the right direction. Having Monos means that Samuel has cells which look for and eat up microbes and dead cells. They are the clean up committee and can migrate into all tissues to eat dead cells and kill microbes. This is extremely good news. Extremely. Also the WBC being down by 50% even though the blast percentages haven't changed much is also VERY good news. At 30K, about 21K of those cells were blasts. Now, at 15k about 9k of those cells are blasts so that is down over 50%. Praise God! And the ANC is 156, not great, but better than 0. His LDH, measure of tumor load is 398 so it is also down (251 is the high side of normal). Liver functions remain slightly elevated but okay and bladder/kidney electrolytes are all in VERY good shape. Praise GOD! Samuel continues to fight for his life. To God give ALL the Glory! More later.
7/3/07
Happy Anniversary to Mark and me! Hopefully tonight will be more fun than last.
We waited almost all day for labs to come back to due some "glitch."
WBC 10.7k
HCT 26.6
PLT 14k
ANC 0
Blasts 57%
So, the white count is down but blast count remains the same. He needed platelets and was losing red blood because of the platelets being so low. They thought we could wait til this morning to come in but after thinking about how much on average he must have lost in the past two days, we opted to come to the ER and get them there. I wanted to sleep without worrying.
Samuel's new supplements arrived and we started them yesterday afternoon. I was told with the low dose of cesium he was getting transdermally, I could just rub it in to his skin. Well, as I was rubbing it in, I got a huge rush of oxygen and energy. AND, I did not like it at all. He perked up a lot and was pretty happy though. So, it was obvious that this stuff does SOMETHING.
So we get to the ER and they wanted to draw labs again to check red blood just in case it was even lower and he needed a transfusion of that. Well, labs came back and looked like this.
WBC 30k
HCT 27.5
PLT 13k
ANC 0
Blasts 72%
His WBC tripled in a matter of hours. Neither of us were overly impressed. However, the red blood cells went up almost a point and the platelets were not dropped massively as I feared. With a dramatic climb of white cells and supposed increase in tumor cells, this should have killed off some of the other cells more but instead they are barely changed or raising. So, that boggled a few minds. Mark and I spent some time pondering this increase and I talked with the support person for the protocol this morning who told me that Samuel's labs are just going to be messed up for awhile as the cesium stimulates the immune system and since it is his immune system which has the cancer, it is going to attack itself and "swell." I had a reaction to the small dosage because I don't have cancer. That is good to know. At any rate, it did something to ME, so I know it did something to him based on the labs. We don't know how many of those blast cells are actually live vs. dead. So going on what is in front of my eyes, Samuel continues to feel better each day and we will continue to walk by faith and not by sight and believe that God has healed our son and that the numbers will manifest in their own time. Yesterday, Samuel's LDH was down again and his liver functions have resumed normalcy as well so both of those things were good news. I talked to the Onc clinic today and they are all baffled at the jump as well. So, we KNOW something is going on. Unfortunately stimulating the immune system for Samuel means stimulating both good and bad cells. The good cells need to go in and kill the bad cells and the major part of the protocol is crippling the bad cells so that this will be possible. Because Samuel is so young and obviously sensitive to everything that goes into his body, this has been a huge response. I just hope the WBC doesn't climb much higher.
I will tell you that seeing numbers like that sucks! Especially after seeing them going down. Unfortunately, we were making some very slow progress on the blast percentages so hopefully in the next two weeks we can see that change dramatically. Samuel's spirit remains strong. He told his RN last night that he prayed to Jesus to heal his body and his blood and every person we encountered there was fantastic to us. The MD attending was perhaps the kindest man I have met yet, even stopped in to say goodbye to Samuel and hold his hand. Don't see that very often. Everyone said they would be praying. We also ran into Mike, ICU Mike from 2004, another of our favorite RN's who immediately sought out every dinosaur item they had for Samuel. So we had a nice visit with her as well. We arrived at 6pm and did not get home until 11pm with the precious platelets. Seems like they are holding 5 days and he is needing them again. I am really hoping that the small stimulation to the red cells will manifest over the next few days to let us know that this marrow is indeed coming back.
We see labs again on Thursday so will try to enjoy the next few days. Tomorrow is Mark's favorite holiday and I see his kids are following suit. So we will try to make it very special for Samuel, celebrating his life, freedom from cancer and chemo. As I told the clinic today, this is about quality of life and I aim to see that he has it.
So, the battle is on, big time. And we can use all the prayers you can muster. Thank you all for each and every effort being made on our behalf whether it be prayers, love, support or finances. May God bless you for your sacrifices. This is not an easy life living from adrenaline rush to adrenaline rush, I will tell you that. The next two weeks will be critical for Samuel. We would like to see that ANC recover as well. Much love.
7/1/07
Samuel has had a fun day today playing at the school up the hill where no one else seems to ever play. We like it! I ran around behind him just thinking about how many platelets he must be using up with all the running, jumping and bumping. Oh, and I could just see him falling down and getting some cut which wouldn't stop bleeding but thankfully, that did not happen. It was a nice morning. He got sunlight, exercise and had tons of fun. I like that cancer treatment. I hope he was able to lose some dead cells through his biggest organ of all, skin. He sure was tired when we got home. This was his first trip out of the house since last weekend not counting the hospital and he just LOVES to go there. I am not kidding. Last time we were there, after being there over half a day, he threw a huge fit about leaving because he wasn't done playing yet. He has seemed a bit more tired today than the past few days and I also see lots of new bruises forming and suspect he will need platelets again. He has passed lots of "chemical" poop again today, but is pooping less times a day, perhaps back to the 3-5 which is more manageable. His butt has healed up nicely except for a slight spot or two in the very inside. And the "chemical" poop is not helping but at least the diarrhea is not nearly as much an issue. Thank God for that! He hasn't forgotten what it was like to have his butt hurt all the time and ask if it would ever stop. He hasn't needed any pain meds in several days so progress has been good on that front.
I have wondered today what his body is doing. Making new good cells is hard work and very exhausting. Plus killing the bad cells is also hard work. Not to mention that cancer cells put off their own toxins into the body and that is taxing on a person as well. His nutritional requirements are high since cancer is stealing whatever it can get a hold of. Today he has been hungry, a lot. More than usual. So he has gotten a lot of food via tube and you would be amazed the things I can get in through a tiny tube. So, it has been a little more work to keep up with this today but my hope is that his body is just working hard making new good cells. It has been difficult to get him to take naps and unfortunately, pooping seems to disturb them every day so far. Last night, however, he woke up, pooped and wiped his own butt without even waking me so that is always a sign that he is feeling good and the poop did not hurt him.
Tomorrow we will see labs again and get another glimpse of what is going on in his body. I really hope to see more good cells and of course it would be great to NOT need platelets since everyone has to juggle schedules for us to get to the hospital. I am not holding my breath on that one though. Tomorrow his new supplements arrive for the alternative protocol and the nicest thing about it is that many of them can be massaged through the skin bypassing his GI altogether and enter the bloodstream within minutes. They also pass the blood brain barrier which is another bonus. This should super charge what we are already doing and the fact that everything is compatible with what we are doing now but super charges the whole concept We know the ph principle works for Samuel so super charging it seems to be the best possible choice. This protocol has an overall cure rate and by that I mean CURE not five year survival, of 50% for patients sent home to die. Most of those have had their immune systems wiped out by chemo, radiation, and surgery and are sent home with their insides mangled by poison. Since Samuel's body has already begun to fight and conquer, my expectations are high, prayers even higher. And honestly, we have been in worse places than we are now. Three years ago, we had just arrived at Seattle Children's with a huge list of problems which seemed insurmountable. We wondered if we would ever bring him home. Two years ago, we were waiting for Samuel's next surgery to take down his stoma and that started a whole new aspect of hell. Last year, this was probably one of the worst months for Samuel's GI and pain with the anal closure. Samuel does not currently complain of pain, he is happy for the most part, he can play, eat and he still has a better quality of life than he did any of the past three years. And all that with cancer. It just seems we have dealt with so many worse problems. Having your child cry in pain every day for YEARS and being unable to do anything about it was MUCH WORSE than this. His suffering then does not even compare to cancer. It just doesn't. Isn't that a sick sad fact. We have been through way too much, helped him overcome way too much to let cancer have the final say. God has the final say and He gave his Son that we might have life, be free of sickness and disease, and live eternally with Him. Healing is ours, God said it, no me, and I already know that He is the only person who is trustworthy, period. Samuel is a living miracle and I am honored and blessed to see it first hand. Thank you faithful prayer warriors for standing in the gap with us for Samuel's life. We thank you for your love and prayers. May God bless each of you for your sacrifices for our boy. To God goes all the Glory, Amen! Much love.
6/30/07 - Preliminary Labs
UPDATE #1 Update 2 follows
PRAISE GOD!!!!!!!!!!! The Onc just called to give me the news and he is beyond floored.
Samuel's labs
WBC 13K IN THE NORMAL RANGE
HCT Holding at 31!!!!!!
PLT 41k Okay we knew this one will take awhile.
I don't have a differential back yet so don't know blast count or if there is an ANC but it doesn't matter because we KNOW they will have improved. PRAISE GOD anyway, this is going in the right direction! This is all diet, herbs and God. Glory to God, praise His name! The Onc wanted to know if I was giving the one med he sent us home with last week and I told him I gave it one day, he got diarrhea and I stopped using it. Oh, we are just SO thrilled here right now. Samuel is doing great BTW. More later. Don't forget to PRAISE GOD with us.
UPDATE #2 Differential is back.
The analysis of the WBC's shows blast count DOWN to 57%. It has dropped 10% in three days! Also, we have cut circulating blasts down in his entire body by another 50% since Wednesday. Again, this is HUGE. Samuel's ANC is up to 2% of his overall counts so approximately 260 with lymphocytes still in the normal range plus some Monos which indicates good cells are coming. ANC's tend to creep up slowly until they hit 500 or so and then jump by leaps and bounds. His hematocrit holding steady is a VERY good sign of marrow recovery as well. At this point, it is obvious that we have stopped the blasts from going crazy in the marrow and what is still left could be just spilling out but the exponential increase has stopped. This is extremely good news considering that it doubled in 12 hours a week ago which was very scary.. Also the blast count does not tell us how many of them are live versus dead so there could be a lot less than what we are seeing, just waiting on Samuel's body to excrete them. It is also obvious that the tumor burden on his body is not as big because he feels so much better. His LDH (tumor level) HAS dropped 75 points to 471 with 251 being the top of normal. Last week it was in the 600's so again, this is great news. His kidney functions have come back into the normal range and liver functions are down from Wednesday but still slightly high. I don't expect to see them recover until his body is done with blasts as it is the organ getting rid of them.
Overall, Mark and I are really thrilled with the labs and thanking God for such a huge turnaround. This did not happen overnight and it won't rectify overnight either. We both know that. But what we have done thus far has reached the marrow and is stopping it. Now the good and bad cells are neck in neck which is a far cry better than when his counts were 43k bad vs 9k good. I like the 7:6 odds much better. Mark and I talked a bit this afternoon about how it is much easier for Samuel's body to live with cancer than it was for Samuel's body to live with chemo. We are on day 9 of treating him hardcore with diet and herbs and he has good cells, good energy, good eating habits and is growing happier and more energetic by the day. He still has diarrhea but it is calming down and still smells like chemicals so we know he is just expelling dead cells which are obviously irritating. All this would be so much easier if he had a colon of course but we will continue to pray that as the dead cells grow fewer, his gut return to normal. We are only killing bad cells and allowing the good cells to come back. His immune system is taking care of the problem which attacked it. I don't have to worry about what the chemo will do next or what surgery awaits us because of it. I am looking forward to seeing that ANC climb back up, the HCT climb back to the normal range and those platelets recovering. That will be a glorious day indeed! But until then, we will take this joyous news with gratitude to God. Restoration has been promised to me by the Lord and I will NOT settle for less.
Next labs will be drawn Monday to check platelets and obviously everything else. But he could need platelets by then so we will see how they hold. Friday we will meet with our normal Onc, who still has no clue what is going on. I wonder how he will feel seeing Samuel's counts double and then fall back to normal ranges with blasts decreasing. I hope and pray there will be no talk of his impeding death by then. Samuel is s survivor. God hears his little prayers. He hears OUR prayers. He hears YOUR prayers. Please keep praying for Samuel's body to fight and overcome as well as for his GI to handle what it has to get rid of. Much love.
6/28/07
Just a quick note to LYK that Samuel is having his best day yet since we received the bad news. I had to coax him into taking a nap because he is just being the Energizer Bunny again. Based on labs yesterday showing elevated liver enzymes and kidneys needing more fluids, I have upped his intake via tube and he has improved even more as far as energy and happiness go. He was doing pretty well already. There is so much to do for him currently and my time is NOT my own. As long as he has blasts in his blood, this is a lifethreatening crisis. There is no doubt about it. Obviously the Onc on call has already written him off as evidenced by our visit yesterday and I reminded him that death isn't knocking on our doors currently so I was in no big rush to sign a bunch of death and demise papers. The head MD of palliative care came to see me, and she is an MD we know well from 2004. She even remembered our old room number. She asked to sit in on our meeting with our own Onc next Friday and I thought that was fine. I hope that Samuel's blood looks a whole lot better on that day so we can leave this talk about how he will die behind. The Onc yesterday was talking about the condition of Samuel's gut and how he could likely have leukemia infiltrate there and cause huge bleeds which would require us to go to the ER and have blood products and tons of interventions. Perhaps we would just rather him bleed to death I guess. I was thinking, "If you only knew the kind of GI stuff I have dealt with and corrected, this would not even be a conversation."
Home health is coming back to check labs on Saturday so we should know more at that time. I expect to see the numbers fall more. Samuel has averaged a loss of 7K WBC's a day so based on that, today should be 13K and tomorrow would be 7K. I don't think they will zero out because he is already making good cells. But this will lower the tumor burden on his body and the toxins cancer puts into his body as well as allow room for the red blood cells to come back and platelets as well. At least they won't be crowded out. Platelets are the last thing to recover so he might be dependent on transfusions there for awhile. We will know what his red blood is doing Saturday. He looks great though, other than all the bruises. Samuel has a normal amount of lymphocytes which are the cells we need to come in and fight the cancer so that is great. I would obviously like to see his ANC recover as well but am doing a lot about that simply with herbs to support the immune system but NOT stimulate more WBC's. All the other cells he does have, other than blasts, look normal still so this is good news. At his original diagnosis, all his cells were mangled, red, white and platelets. None of them looked normal.
An interesting thing I noticed when pulling out all Samuel's old labs from Tacoma that he has almost always had an elevated LDH. This is the measurement of tumor activity in the body. So, my suspicion is more concrete that he has always had this in there, but that his diet was enough to keep it at bay. When we changed that in order to heal his gut, it allowed the leukemia to resurface. Very interesting. The girls in clinic always mentioned that it was high but never really said much else since we had chosen to leave treatment. We knew in walking away last year that he had 1-2% abnormal cells in the marrow but they were unable to classify them as leukemia. I don't know what his marrow looks like at the moment and we do not intend to find out. Samuel's new treatment plan does address both the marrow and CNS so any cells in either place will be sought after and destroyed.
If you live in the Seattle Tacoma area, and want to help, there are some things you can do. One, give blood or platelets. Both times we have went in for platelets, there has been a shortage. Because Samuel has a shunt, he cannot wait long when his platelets are critically low. We do not want a brain bleed. Also, if you know someone who is raising grass fed egg laying hens who would be willing to sell us the freshest eggs possible, please e-mail me. I think I might also want to get unpasteurized goats milk so if you know someone who can help us out with that, please contact me.
Some have asked for our address so I have posted it above. Samuel likes to receive mail and he saves everything that enters this house. My other children appreciate being remembered as well. This is hard on them too. Kaysha likes to receive letters and will write back to anyone. Daniel has never really received any letters but he could sure use some writing practice. Obviously, we are taking a school break for the time being. Anna is the lucky one who lives in laa laa land without a care in the world. We all had a lesson in blood cells today so that they understand what is going on inside Samuel. Samuel is now telling his red cells to come back, his platelets to come back and his white cells to kill all the bad cells. He does not know he has cancer and I intend to keep it that way. He just thinks his body is not working right at the moment.
Seattle Children's called today to LMK that Samuel's next anal dilation is July 17. So I had to let them know about the relapse and that if he has no ANC, we will not be making it. I have not let the GI or ND know yet. Did not have time. So Seattle is calling the GI to let them know. They are all nice at that office so I am certain that their thoughts and prayers will be with us. I am so thankful that in this time, we have assembled such a great team of people.
We start his alternative protocol Monday or Tuesday, depending on when stuff arrives. I still have a lot of studying to do and time management planning because he will be busy and attached to his pump a lot. I am working with someone in another state with this plan and so far feel like it is the best choice for Samuel. In the meantime, we will continue to treat Samuel by diet and herbs, which obviously are helping tremendously and I thank God for the huge response. I was warned that he could get sicker before better but I think we have done a lot of the hard work already and hope that he will just continue to feel better. I was also told that if he gets a headache when we start the protocol, then we will know he has CNS involvement. At this point, he has no pain in his bones or his head. He has no fevers, and he says he feels "better than ever" still. We do not intend to do either a spinal tap or bone marrow aspirate to check for cells at the moment. If they are in the peripheral blood then they are concentrated in the marrow too. We probably won't see major marrow recovery until we get blasts out of the blood stream. Their diagnostic tests do not see everything and while they are a guide, they are often misleading. Else, people would not get ALL CLEAR on the tests and later relapse. I see no point. This is about quality of life and these procedures impede on that.
Samuel's body is adapting and I realized over the last few days that his poop has changed in color and smell. It smells mildly like chemicals except that he isn't ingesting chemicals. So apparently dead toxic cells smell like chemicals. Normally, a person excretes dead cancer cells through urine but for a person with no colon, a fair amount of cells will come through as poop. And this may well be the irritation he is experiencing. Diluting it more with fluids has helped a lot. He was up three times in the night pooping and peeing, but did not hardly complain. I do think we will be going through a lot of Neosporin for awhile though. I am just glad he is looking good, feeling good and the bulk of the bad cells have left his body. I guess as long as the poop smells like chemicals, I will know his body is ridding itself of cancer cells. He is fighting cancer the way God intended, with God's medicine and his own immune system. I believe in God, in God's medicine and I believe in Samuel's will to survive. My mom reminded me to receive Samuel's healing for him on the very first day this started and I did, and I do.
That is it for now. Special thanks to Eileen for graciously donating her milk to Samuel so that he might get some neutrophils as well as all the other wonderful things breastmilk has to offer. I considered relactating but I have so much to do that I don't think I can fully concentrate on eating and drinking enough to sustain. Please keep the prayers going for Samuel. We appreciate that more than you know. Much love.
6/27/07 LABS UPDATE
We just got home. He needed platelets which is no surprise given the amount of garlic and enzymes he has received. They were down to 11 today.
We have made great progress.
Friday his WBC was 52.5k Today it is 20k. Normal is 5-15k so we are going in the right direction considering it could have been and should have been in the hundred thousands.
He had 31.5 HCT so we are good there a little low but he usually runs 33-34.
Circulating blasts are 67% down from 84% Friday. If you work out the percentages blasts made up 43.7 of his 52.5 blood count Friday. Today blasts are 13.4 of the 20 so we have cut circulating blasts down by roughly 70%. This is huge!
His LDH is also down showing tumor load is decreasing.
It is all good news and very significant for five days time. His lymphocytes are absolutely in the normal range, last Friday they were not. He has an ANC of 200 so we still suck there. But he is not sick. Just needs to drink more/be hooked up to his tube more often to get more fluids.
He has been feeling better by the day because his cancer burden is decreasing. I warned the Onc that he was going to see a whole better set of labs. A new person there asked if he was on chemo and then asked what we were doing for Samuel. Someone actually though the lab messed up. Praise God. Please keep the prayers up. God is at work here. Samuel is resting. He needs to sleep to heal. His lymphocytes are keeping his butt healed but we still need prayer for his pooping to slow down. He has a lot of dead cells to excrete still. This battle is far from over so please keep the prayer chain going. Samuel is a fighter and his spirit is strong. Please praise God with us and continue to pray. Got a lot to do, got to take care of my boy, be back later. Much love.
6/26/07
Apparently Home Health decided not to come out today after all. Course they forgot to call to LMK so I did not find out until this afternoon when I called them. So now, we are just planning to go into Tacoma for a TPA assuming the line does not work. Big kids are going to Mark's parents and my Mom is taking Samuel, Anna and I. Oh, as always, this would be so much easier if I could drive. So we will be in clinic at 9:30am trying to unclog the line and hopefully getting some lab results. This would be extremely frustrating if Samuel was in need of blood or platelets so thankfully, he continues to thrive.
He has had a nice day though we really need to get the poop situation under control. It is not terrible at this point, but any even slight diarrhea irritates him. He is still looking great, perhaps even better than yesterday as you can see by the pics. There is so much you can do for blood issues. Red blood can be aided with green veggies and seaweed while platelets can be aided by veggies rich in vitamin K. It is no wonder he used to have 500K platelets when I was juicing for him daily. Of course the only thing you cannot do for them is give them white cells UNLESS you have breastmilk which is the only think I don't have this time around. However, it seems he is making good cells at this point. Certainly, he is not sick and is still bouncing off the walls running the big kids all over the house. If we could stop the occasional diarrhea spell, he would be feeling even better.
I made an appointment with Samuel's Onc for July 6th, the day he returns from vacation. Mary just returned from vacation today and called me this afternoon. She apologized for not being there for us last week but there was no need for apologies. She wanted to see how I am and I told her that I am not sitting here wringing my hands crying and worrying, I have lots of work to do helping him get better. There will be plenty of time for crying if he goes to the better place. Until then, I am not making any time to break down. I told her that I remain hopeful and will just continue doing what I have done the past three years, troubleshoot Samuel and fix him. If we learned anything in this last three years, it is that no one else is going to do it. And if in the end, he goes to heaven, we can look back and say that we tried everything and have no regrets. She informed me that the clinic was willing to do anything we need them to at this point and will support any treatment plan we decide. I have a plan so it will just await our Onc returning to sit down and go over it. I am SO thankful we came back to Tacoma because I can guarantee you that Seattle would have no part of what we are about to do. The Onc on call last week actually contacted our former Onc in Seattle to see if they had any other options but the only options discussed were Phase II trials in which no one is certain what the drugs actually do and it requires lots of monitoring, etc. Sounded like they had a conversation about how much we do not enjoy coming into the clinic.... At any rate, I received no commiserations from our previous Onc and I certainly would never give him a drug in which the side effects were not known. Moving on, Mary is simply the best SW and friend to us. She fully supports what we are doing and believes that Samuel is miraculous. I told her I was expecting a completely different set of labs this time as I think this has possibly been going on for at least a month and a half. So our conversation was very positive and I am so thankful that Samuel likes the staff and office there as well as the fact that WE like them too. She asked if I have been sleeping and I would have to say no, not really. Sleep has been hard. At first, it was just worrying and then it turned into researching and going back in my mind to what we did in 2004. Lots of thinking about how to deal with the issues we presently have. I hope to sleep better tonight but I have been using benedryl nightly to help. Eating has been hard as well though in the last two days, my appetite has seemed to return. It is hard to do all this with little rest and food and I know I need to take better care of myself right now, but it is difficult.
Mark has been back to work the last two days and it has been hard for him to be away, not seeing Samuel or knowing first hand what is going on. We are both remaining positive and keeping ourselves only in the presence of those who are also positive. I don't have room for negativity, doubt, or pity. We, Samuel's parents, have a job to do and we will do it. With a WBC of 54K on Friday and 84% blasts, no "treatment", etc, Samuel should be in a very bad place, he should be getting progressively worse but instead is getting progressively better by the day. Those white cells double daily so even if diluting them with blood products brought him back to 20K, by today they should be over 300K and I just don't believe we will see that tomorrow. I believe labs will look a lot more normal and that perhaps blasts might still be present but they will be a lot less. I anticipate seeing some neutrophils and good cells circulating. The two sticks from needles into his port yesterday did not bruise at al as they did last week. I don't see any new bruises today and he has been less than careful. Everything he had is healing. He has some GOOD cells in there in the Name of Jesus. Samuel is a fighter and his spirit is strong.
We appreciate everyone who is coming into agreement with our prayers right now. We appreciate all the kind notes and prayers going up for our son more than you will ever know. Some nights I am just awake praying because there is so much to do, read, and caring for Samuel and the other kids that I just don't pray a lot in the day. It is nice to know you are covering us with prayers. We appreciate you spreading the prayer chain for us. We appreciate everyone's efforts to help our family at this time and are greatly humbled by the outpouring of love and concern for our boy. I believe Samuel IS healed. I am not calling this cancer, but simply a blast crisis. I know we can turn those cells around. Samuel will live out his destiny that God has set in front of him on this earth. Samuel will change lives because of his situation. This is God's child. Again, I let the Lord know that Samuel is HIS, not mine and that I will follow His direction. All I ask for is Mercy, whether he lives or his spirit goes to Heaven. He deserves Mercy. It is such a privilege to be his Mother and witness God's grace and mercy. There is no other place I would rather be than right here in this family. Much love.
6/25/07
I added a new pic tonight. Is it me, or does his color get better and better with each day? Samuel has had another good day today. No fever, his butt is almost completely healed up now though we have yet to get this pooping under complete control. Things on that front are a lot better and he had no pain today and did not need any meds. He did have some stomach pain however and it is from one of his herbs which goes in and finds bad cells and kills them. We have been playing with dosage and food additives to get him the most amount of it with the least amount of side effects. If this were chemo doing this, it would piss me off but knowing that it is something good which only kills bad cells makes me continue to try to find the right combination for him.
Home health care came out today and what I thought would be a short visit took two hours. Samuel's port did not draw. And even worse, it did not flush either. So it probably has a clot in the line now. They are going to send someone different out tomorrow to try again and if it still does not function, we will have to head into clinic to have TPA done and hope to save the line. We are 99% certain that this line has a sheath on it anyway, and it seems like getting platelets just seem to cling to it and make things worse. Samuel's very first PICC line did this very thing after getting platelets and it was a huge pain because a line that does not flush or draw is useless. The ladies who were here today were fantastic and just in awe of Samuel. He continues to bounce off the walls.
I talked to the support person for the alternative protocol we are now going with. He wanted to be absolutely certain that we are NOT doing chemo and will not be harassed by an Onc because chemo and this protocol are not compatible. No problems there. He also was a great source of information on several other fronts. I could really see how God led us in the beginning of all this some three years ago, with diet, supplements and how things were prepared. I got some other incredible info from him today on ways to help Samuel feel better during this "blast crisis." It is all so exciting and I will share the info here at a later date. Just don't have time now.
Things are busy, Samuel requires a lot of care. For the last two days, he went through underwear like crazy. Things slowed down a lot today thankfully. I am so thankful that we have spent the first six months post his anoplasty healing his gut from the inside out. There would be no way he could handle this diet change otherwise. I just pray that his gut continue to adapt. Previous to his ileostomy take down, he was on a 75% raw organic diet. Only thing cooked was his chicken stock. Since things had become so terrible with his gut condition, he had to go to a 100% cooked diet. The stock was still okay, he lived off that for months last year when he was not able to eat food, but the rest of the foods have allowed for his ph to become too acidic. Acidic cells allow for cancer. Perhaps he has always had leukemia but we have kept it at bay with diet. Since the change, it was able to resurface. I do believe that. I hope we see labs that show a major difference tomorrow assuming that line works. Obviously from the picture I posted, he is not in need of red blood any time soon. He just gets pinker. And his port was accessed twice today with two different needles and hardly bled. We did, however, notice some bruises we do not remember if were there or not so we are watching him closely.
So, the update in a nutshell is that we haven't given up, we haven't lost hope. We will continue to fight with God's medicine just as we always have. We have done nothing less than build his body up, repair his got from the horrible damage of the past three years and now we plan to kill the cancer for good. We have never formally done an alternative protocol because diet and the chemo seemed to be enough. I believed that cancer was gone and it was not necessary. Obviously, I was wrong. I am thankful that he is so healthy, and that his gut is healed enough to make the major diet switch again. So, now we will do both. We continue to lay hands on Samuel and remind him to pray for himself as well as tell his body, out loud, to work. "Tell your body to work, tell your blood to work, tell your bones to work." And he does it. Even little Anna prays for Samuel every night though she has absolutely no clue why. The big kids are hanging in there though they have had some rough moments. They know we are not giving up and that we look solely to God to continue to lead us as he always has. And if nothing else, use this situation for the greater good. Samuel is a fighter and we intend to capitalize on that. He should have died three years ago. His spirit is strong. And for the record, should we ever get to a place where we decide it best to send him home to heaven, we will. We will not trap him here in a body that fails him. He has suffered way too much and we are not that selfish. Will it be hard? You bet. Thinking of him not being here makes me sick and tearful. It is unimaginable. We just don't want him to suffer a long drawn out miserable death. With his will to live, we fear that is what it would be. I talked to him about heaven today, where it was, who was there and when you are supposed to go there. "You go there when you are old and done with God's plan for you on this earth. Little children are supposed to stay with their mommies and daddies. " Jesus died so that we might have life, not die young from a miserable disease. I just won't accept anything less than God's Glory. My children are learning a valuable lesson on trusting God during this time and in my private conversations with God I remind Him to not disappoint them.
Thank you all for your prayers, and those doing fundraiser's for our family at this time. Our insurances does not cover alternative medicines so we bear that financial burden now. You cannot put a price on a life. Samuel is the super glue for this family and he always has been. He deserves a chance to live a good quality of life for more than just the past two months. He does, and he will. Much love. May the Lord bless you all.
6/24/07
Just a quick update to LYK that Samuel has had another good day. It seems like he is past his cleansing crisis though we dealt with diarrhea just about all day....lots of probiotics and a little morphine helped a lot. About 3pm he got up from his nap and seemed "back to normal." That was about 48 hours after his transfusions and tons of packed nutrition, high ORAC essential oils to flood his body with oxygen and kill bacteria, herbal treatment for microbes and fungus as well as colostrum to help fight this. Truly, I have an arsenal here of things to use. He was running around here trying to get everyone to play with him. Most of the morning he laid on the couch and yesterday he was easily tired as well so this afternoon was a huge step in the right direction. He ran around here like a nut with me behind telling him to be careful as I don't want those platelets being used up. No fevers, and his butt has almost healed up. I expect to see it looking tons better tomorrow. I also expect to see a whole different set of labs. It is going to be a busy day but we are expecting miracles and I refuse to settle for less. Samuel should NOT be healing if he has no white count. Yet, he is healing and full of energy running all the kids around til he drove them crazy. I finally got him to sit down and color. We continue to thank you for your prayers and love. Please don't stop. We give praise to our God of miracles tonight. Our son is healed in the name of Jesus.
6/23/07
First off, if you have not read the 6/22 update, this one will not make sense to you.
Secondly, thank you all for your prayers, notes and love. It is wonderful to be surrounded with prayers at this time as I have a lot to do. Please continue to spread the prayer chain for Samuel. We have come way too far to surrender to this bump in the road now.
With all that said, Samuel has had a great day. He is doing well for a person who is supposed to be dying. I don't believe that. I refuse to believe that. It is good to see the color back into his face but he has a lot of bruises. A lot. Today at the creek, the kids were throwing rocks into the water and Anna accidentally hit him right on the side of his face with one. Now he has another bruise to eat up his platelets. He face looks really awful currently and he refuses to be careful so he just keeps adding to the growing number.
So, this all began last Tuesday. Mark accessed Samuel's port and at first it did not draw at all. Just like usual. But suddenly, it drew especially well. We were happy. I thought how nice it was that it works and that bought us another month free of doctors. But when Mark deaccessed the port, it bled and bled and bled. Samuel's incisions never bleed. Never. So, that was the first thing that started the red lights in my mind. The next day, the port area had developed bruising. This never happens either. My mom came over and I asked her if she thought Samuel looked pale. She remarked that that was the first thing she noticed when she came in. Later that day he got a bloody nose. Daniel got frightened when he saw it and said, "Oh, no, Samuel must be sick again, he might die." That was Wednesday. On Wednesday, I doubled his intake by tube and added raw greens figuring he needed iron and was just a little anemic. He is always borderline simply because of his lack of anatomy. I hoped to see an improvement by Thursday, but only more bruises and more pale. At this point, I had not mentioned anything to Mark or the kids yet. Samuel looked sick. I asked Kaysha to look at his tongue, based on Chinese medicine, we are always inspecting each others tongues and she remarked that it looked pale. "Paler than usual/" So I called Mark at work and ruined his day by letting him know that Samuel needed labs drawn immediately. Neither of us wanted to assume the worst but it was very difficult given all the signs. So I called the Onc clinic only to find out that my Onc was on vacation for two weeks. But we were able to get orders for his labs to be drawn in a nearby town hospital so after Mark came home from work, we accessed Samuel's port again and of course, it drew. No clots now. We went to the hospital where we first received Samuel's diagnosis three years ago. The drew a stat CBC and handed us the page without comment. Mark started reading me the numbers and was unsure of norms but as soon as I heard them, I grabbed the sheet from him and read them myself. Platelets were 19, Hematocrit was 19 and White Blood was 30. I cannot even explain to you the utter feelings of demise we felt that moment. He had 99% lymphocytes which is the most immature cell but this was probably misappropriated and was truly blasts. All 30K of those cells were worthless. And Samuel was happy and full of energy in spite of that. Mark's Dad had come over earlier that day to get Kaysha and Daniel to swim so it was just Anna along for this ride. They did not have a clue about anything. We told Mark's parents once we arrived and I had the Onc on call paged. It happened to be our first Onc. I went over the labs with him and he was fairly sure it was relapse, as we already knew. He talked to me for about 30 minutes, in fact, I was trying to get off the phone and he kept talking. He briefly went over our options and I told him that every drug option needed to be weighed against Ibuprofen since Samuel cannot even take that without having an adverse gut reaction. It sounded like there might be a few interesting things to consider and I told him to make me a list and bring all the side effects with it so we could decide. The plan was to arrive in clinic first thing in the morning, Friday for transfusions, etc. He felt Samuel would be fine overnight. We decided to leave the kids with Mark's parents but take Anna with us since it just seemed so unfair that she has been with Samuel through everything, she might as well be by his side now.
Well, I was very concerned about his shunt and hemorrhage in his brain. Very concerned. I know in Seattle they take shunts and platelets a lot more seriously than in Tacoma. So, I did not sleep all night. I tried to, but had horrible nightmares and ended up going into his room every hour to check on him. At 4am, he woke up saying his tummy hurt and that it hurt to breathe. Later he puked. After that all the small veins hear his eyes pooped under the skin so we paged the Onc again and let him know we were heading in to the ER. He had notified them of our arrival and due to Samuel's no immune system, we were escorted to a room immediately. We also saw a doctor immediately who had labs drawn and ordered platelets. Once labs came back, it was reported to us that Samuel's platelets were now 15, his WBC now 54 and his HCT was UP to 21. That baffled them just a little. And despite his low hemoglobin, his oxygen sats were 98. That was something that concerned me so I was really happy to see he was getting enough air. Blasts were 84% and Samuel had NO ANC at all. The MD told us that and said that he wanted to put him on antibiotics. We refused and they were very understanding about why. Antibiotics will ruin Samuel's gut lining and cause diarrhea. That will ruin his outer skin and if he has no good white cells, there will be nothing to repair the damage. It is a really sick thought. I can do so much better with herbs, which is most likely why he does not have an infection.
Everyone was amazed at his energy, his joy and that he was not sick, no fever at all. His temp was 97ish the entire day. Our first Onc responded to Samuel in the exact same way he did originally. "He looks amazingly well considering." I have to give props to this Onc because he was just fine all day and handled things with us well. I would have preferred my other Onc, but at least this Onc has a really good idea of what happened to Samuel and he doesn't seem to have forgotten much of any of it. Anyway, we were eventually moved from the ER to Oncology Clinic, which was nice because I like everyone there and everyone knew what was going on. They handed us $20 in food vouchers so we could eat. Who could eat? I couldn't. Drinks were fine but food was just out. Being up all night did not help at all either. Platelets were delayed due to a computer glitch and then a short supply. So we pretty much sat in the clinic and played until about 9:30am when the Onc came in to speak with us. So we went over all the options we will not do. Transplant is the normal course for a high risk ALL relapse. Obviously, that is never going to happen. We were offered some other experimental drugs used for other conditions but failed but side effects seemed to be useful for leukocytes. We were able to choose one from the list and there is another option, kind of a super vitamin A which is supposed to help mature the blasts and turn them into normal cells. They have to order it and it has a lot of side effects. I think I could load Samuel up on carrot juice and do better after looking it over.
Then we went over the inevitable list of ways he can die. Well, let me say that there is no dignity in any of the ways presented. He can get an infection and die of sepsis. Apparently this was one of the best ways to go. Well, I remember sepsis and I don't think I care to ever see that again. Or he can have leukemia infiltrate all his organs causing them to close down, his body to fill up with fluid until it reaches his lungs and heart and crushes them. When he had CSF draining into his abdomen, we got a little taste of what this would be like and I did not like it, did not like it at all. That would be a horrible way to die. He can have CNS disease and stroke. We already had that fright too and I don't care to have a comatose boy again either. You get the picture. Then we got the DNR paper to work on. This Onc thinks that untreated Samuel could go up to three months just with transfusions but eventually they would stop helping and death would come in some horrible way that my children will have to endure. Hospice can come out to our house and he can die at home, or we can be inpatient. It is pretty sick. I decided that we really only have two options, either Samuel die peacefully in his sleep when no one is expecting it or he gets another miracle from God. That is it. He has suffered enough.
So after this discussion, we went to infusion and he got his red blood first which took three hours and then platelets......finally after waiting all day. He was pretty happy and Anna did really well considering we arrived at 5am and left at 2pm. Neither had a nap. Mark and I talked a lot neither one of us believing that we will have to let him go. We both agree that conventional medicine has no other options for us that we will put him through.
So, we left with the one drug in hand and even the pharmacist knew what we were facing and was very kind. Mary was not in clinic Friday so to my knowledge, she does not eve know yet.
We came home after the longest day in my life to date and I filled Samuel full of raw veggies, and some of the older cancer alternatives herbs I have had shelved for a year or so. I actually had started this earlier in the week just to give him back some iron with all the greens. He was feeling fine, happy to be home. Mark's mom brought the kids home later towards evening and Mark sat them down and told them the news. Both cried. They are no dummies, they knew something was up from the night before. Mark told them that the doctors cannot fix Samuel, it was up to me and God now. He told them that Samuel might have to go be with Jesus. He also told them about Samuel's NO immune system and now we are all hermits again. Everyone washes, cut their fingernails off, and they do not get to go out with other germy people.
We spent today playing at the creek, taking pictures, video, etc. It is hard to imagine that these might have to sustain us. Samuel was happy and energetic today though took a five hour nap. We went for a walk this evening and he ran around like a happy go lucky little boy. No fevers, nothing. And it seems that my veggie juice caused a cleansing effect, diarrhea and his skin broke out. Not good. With a normal immune system, this would heal overnight. But he supposedly has no cells to heal this now. So he took a few baths today and had a little morphine. I have radically changed his diet, adding some herbs back which were removed as well as several supplements and colostrum. I had Mark look at his butt before I put him down for his nap. After he got up this afternoon, it was actually better. Yes, better. It should not be better. Yet it is. Hmm. My hopes is that with the flooding of raw food nutrients and herbs, etc, we CAN mature those cells and when they mature they will go in and heal Samuel's skin. I pray that is the case. It is a very shaky ground to walk though because we don't know.
So backtracking a bit. Marla sent me a note today thinking that he has had this issue for awhile if he needed transfusions of both blood products. Usually hematocrit sticks a little better. In thinking back to a walk we took over a month ago, I remember Samuel looking similar to the way he did this week. Very pale, photosensitive, tired, grumpy, etc. And I gave him extra supplements and he improved and looked better. Now, we are wondering if he has had this for at least that long and that as his g-tube diet became less and less, and his table food became more and more, if that gave leukemia a chance to come in. We do not think it is an accident that he has remained in remission for over three years. But now we are really analyzing his diet and what things changed this month to allow for a relapse. And feeling hope that we will change this diagnosis.
The Onc of course told us that Samuel is palliative care. Any treatment they do would be to prolong, not cure. We know that. We knew it last year when we walked away from chemo. This is not big shock. I am certain they felt shocked when we weren't begging them for cures, answers, etc. I know they don't have any. At this point, we do not know if Samuel has CNS disease. That would require a spinal tap which we are not willing to do at this moment. He did actually complain about a headache this past week as well but nothing since. We will wait and watch at this point. The way things are now, home health care will come to draw labs Monday and Thursday to determine if Samuel needs transfusions and obviously check the WBC/blasts. We really feel like something is going on with Samuel. He is fighting this. We are giving him the tools and he is fighting. His butt should NOT be healing and it is. His hematocrit should NOT have went up, but it did. He should be sick and he is not. We praise God for His miracles. We know HE is able to do what no man can. I pray for His guidance. And with that said, obviously we will know more Monday when we see labs. We will also know more tomorrow when I see the condition of Samuel's butt.
