2/22/08
We had a nice visit with the GI. She showed me where Samuel's spleen was and it has shrunk back a bit from her last check. She was impressed with Samuel's weight gain, vitality and especially yesterday's labs. But my main concern was and still is that he is not producing enough red cells and the ones that he is making are abnormal. We talked about the iron levels and she indicated that iron is stored in the liver. All Samuel's liver tests have been normal. However when she felt his liver, he just about came off the table because it hurt. Tonight, I have an e-mail from her saying we should get an ultra sound of his liver and spleen to see what is going on. Samuel's ribcage has changed over the past several weeks. His sternum has always looked a little strange but now the bones stick out like something on the inside is forcing them out. RN Kathy asked me about this several weeks back and I shrugged it off thinking she was noticing the funny anatomy that has always been there. But when Mark and I looked at it, it was not the same. We asked the Onc who said it was just a malnutrition thing, but since Samuel has been gaining weight, it is not improving. She thinks his body may actually be doing something here to find new ways to make red blood cells. Confusing? Yes, we are still wafting for clarification on what to do. Just what I need, another problem to think about.
She also asked for Samuel's 6MP levels to be drawn just in case this is the culprit. When I faxed the request to the Onc clinic to add it to the next draw, they asked, "Why does she want that?" Well, somebody needs to figure this out and quite frankly, they don't seem interested. We hope to get more answers in the next two weeks. It would be really nice to know WHY he cannot make enough red cells when everything else has seemingly recovered nicely. I told the GI about the MD in VA and gave her this MD's contact info. I really hope these two connect. I think that would be really good for Samuel's care.
Samuel has not grown at all in the past 12 months, if not longer. The GI says you need three solid months of weight gain before you have a growing spurt. With all Samuel's GI issues over the past couple years, there really hasn't been any good solid weight gain. Last year, we got three months, then relapse. He was probably ready for a growing spurt and cancer stopped it. So it is not any wonder why he never grew then. Now, we are into a good couple weeks of weight gain so that would make it so by May we might see him grow again. He is the only child I have had who needed clothes bought a size smaller. He is the only child I have had who wore out his clothes because they fit for three years. I guess we got our money's worth but somehow it seems unfair. Samuel's weight is in the 5th percentile and height in the 13th. The GI assures me that he will still grow to whatever his genetic code is supposed to be as long as we can keep him healthy. In comparison, all my other kids are in the 75th percentile and Daniel is off the charts. Anna is one inch shorter than Samuel and they now weigh the same amount. Mark says I should just be happy he is alive and not worry about this stuff. It is not that I am worried, but I don't want him to be stunted over all this. Restoration means every part of the body, not just pieces. I want him to be a big man someday with no signs of this hell he has been through other than the faded scars.
Samuel continues to thrive and is making up for lost time playing and playing and oh yes, running. In the grand scheme of things, this cannot be overlooked. Whatever is going on is not slowing him down, just driving me nuts. Thankfully, I have a GI who seems to have the same problem. Not knowing the answers drives her nuts too so she ponders it until she knows. I wish all our MD's were like this but realize we are lucky to have found one who is like this. Praise God for leading us to her.
2/21/08
Today's Labs
WBC 3.4k
ANC 2414 61% segs 10% bands
HGB 9.5
HCT 28.9
PLT 113k
LDH 222
Phosphate 2.9
Uric Acid 2.8
No blasts today, the eight month anniversary of Samuel's relapse. I told RN Kathy that I did not think he would have any blasts today based on my cancer theories. His cold is pretty much gone and he is feeling great. Samuel is on a very small dose of steroids now and his ANC is going up and strong! I thought we might actually see it go down and his overall WBC go up. Not yet. I love seeing so many strong mature neutrophils! I did not give the MTX this week and won't. We are just seven days past the last dose and this is the time when it would become active. Hopefully this means that by next week we should start seeing the PLT go back up. Hopefully see the RBC's go up but that may still be it's own story. If we don't see the PLT go up, then I will start reducing the 6MP dose JIC it is helping keep these down. We should be done with the steroids next week. Samuel's phosphate and uric acid are now even lower than we have seen. Low normal phosphate is 4.3 and low normal uric acid is 3.5. As I told RN Kelly, there is just NOTHING going on there. It doesn't seem there is much cancer activity, neither making nor killing. It may well be that these tiny doses of chemo are keeping Samuel's marrow from recovering. I did leave a message letting the Onc know we were tapering the steroid and have been for the past week and I am holding MTX until further notice. I am really glad we did not opt for the IV dose because I am certain Samuel would be needing transfusions and his WBC would have crashed.
I was going through some old links last night and came across some stem cell research on leukemia. Newer research theories are that leukemia cells have a stem cell line in the marrow. Because a stem cell always retains a "copy" of itself in the process of cell division, the leukemia stem cell has a limitless capacity to sustain the disease process. The leukemic stem cells have a damaged DNA which does not recognize they are malignant and die but rather makes cells multiply and eventually eat the body alive if left unchecked. Chemo only kills rapidly dividing cells and if there are leukemic stem cells which are dormant at the time of treatment, they are unaffected. This is being used as a hypothesis for relapse. Stem cells which are dormant or survive treatment may later be activated and start the process all over again. This reading reiterates two things to me. One, treatment for leukemia needs to be lifelong. No test can tell if cancer is gone. The tests on blood we get now cannot even determined which blasts are dead or alive. And two, foods which find and repair DNA and RNA need to be staples in the diet. Enzymes which eat the protein shells off of cancer cells need to be lifelong. All cancer cells have protein shells which make them unidentifiable to the immune system. Proteolytic enzymes taken on an empty stomach eat the protein off these cells and once they lose their protective covering, the immune system can take them on and either repair them or kill them. Certain foods have more DNA and RNA repair mechanisms than others. Two of which are spirulina and Chlorella with Chlorella being the highest in DNA and RNA than any other food I have found. In all the research I have done, there are several things that seem evident. No one completely understands cancer. With all the "research" being done, people are still dying, children are still dying horrendous deaths in which their bodies are literally being eaten alive by malignant cells. I read blog after blog where people want more money for research, and I just wonder how much more successful research would be if all of these "researchers" had a child who was unable to tolerate standard treatments. Perhaps that would light a fire under someone. The other really obvious fact is that cancer is a disease of the whole person. Treat the whole person. Treat the whole person for life, not for a few months or years. As one of the Oncs in the clinic told me a few months back, the goal of chemo is to reduce the tumor burden in the hopes that the immune system can manage the rest. He has seen kids relapse ten years after the fact with the VERY same cytogenetics. Like there was a stem cell left over that reactivated. Of course no one knows what activates these cells either but there are many theories in the alternative realm. I have mine. I hope that any leukemic stem cells Samuel may have all get activated this time around and killed once and for all. Regardless, we will not let our guard down ever again.
Breastmilk also helps to repair DNA and RNA. We got a new batch of it today. Probably a few day's supply because when I get it, I use it as fast as I can. We are so lucky and thankful for this lifesaving gift! I pray it is getting into Samuel's marrow and helping it recover.
We will see our GI bright and early tomorrow and my list of questions for her is a lot shorter than it was the last time we were there. We still do not have a time for Samuel's next dilation so I will need to find out about that. Samuel's anus is behaving though so we can probably put it off another week or two. I mainly just want to talk to my GI about the iron overload and abnormal red cells Samuel is still making. While it might all be chemo, I will be interested in hearing her thoughts. It is going to drive me insane until I see this cell line recover into a normal range. It may well just take time.
Praise God for Samuel's healing, his joy, his energy, his stamina, his life. Praise Him for continued wisdom and people who want to help. Bless all who have sacrificed on our behalf. We could not do this without you.
2/20/08
Samuel continues to feel great! He is really putting the miles on that big wheel. I have to run to keep up with him on it now. He just laughs and says, "You can't catch me." I told Mark that he reminds me of the part in Forest Gump where Forest decides to run everywhere. Samuel has just decided to run everywhere. Everything is now, "Race ya!" Yesterday he ran a quarter mile at the park just for the heck of it. Off he went and he just ran and ran. It must just feel good to him. Two months ago, he could hardly walk. We were carrying him everywhere. Now he has this stamina which appears to have come out of nowhere. He can run! He might be running for the first time in his life. I don't really remember him running like this in a long time. His butt was always too sore. The only thing that seems to pop the bubble of fun is hunger. Today we had to leave the park because he decided he was starving. Hopefully this will simmer down as the steroids taper though he can eat and eat and eat as far as I am concerned. His body looks so much healthier and he has gained back a lot of muscle as well.
We are slowly tapering off the steroids and he seems to be handling it okay. One of the issues with being on them for so long is that your body just stops making them because it does not need to. So hopefully in another week or less, we can have him free of them. My list of issues with steroids is long but another issue we will always have in our minds is the brain shrinking part of them. Since steroids were linked to Samuel's hydrocephalus, this is not an area we want to play around with. I wonder how much of the emotional disturbances from steroids come from the neuro aspects of them. I am really not interested in testing it out any further. Since tapering the steroids, he actually seems to be now kicking his little cold. Hopefully this means his WBC is back in the normal range and his ANC is still good. One of the things I noted on Saturday's labs was that Samuel's neuts were 42% segs and 2% bands. Segs are the more mature neuts so this is good. Just a few weeks back, he had about 60/40 between the two. So his mature neuts are just getting stronger and he is able to make more of them. In the grand scheme of where we are now, this is very encouraging. Even the Onc had to comment that Samuel's neuts have remained strong and in fact are getting stronger. Saturday's labs are the first ones I have seen where segs and bands were both in the normal range. Previously, segs have been fine but bands have been abnormally high. They are still good cells, but Samuel should make a larger percentage of segs. Any neuts are better than no neuts however.
Samuel's cough sounds more productive than it has in months. It just seems like whatever he got from Kaysha is gone and we are back to the pesky wheezing with an occasional useful cough. I will be so happy when this is GONE. Samuel has never had lung issues until last November and they have plagued him ever since. His gut continues to be strong, digesting well, very few tummy aches these days and very good looking poop. We are still working hard to maintain his gut function but it is getting easier and he is able to eat more table foods with no problems.
We will see labs for the week tomorrow. I haven't spoken with the clinic all week. I have discovered some new bruises on Samuel's legs over the past few days and one on his back that looks like the kind you get when your platelets drop suddenly and your body is not used to conserving them. These are most likely from last week though. When he was getting platelets all the time, he would look okay even though he was really low and two days after getting platelets, I would start finding tons of new bruises. The way he plays, it is amazing he does not have more bruises. Last night he jumped up and landed on his knees. "You are wasting your platelets!" Of course he made the correlation only after he crashed. So far I don't see any bruises there.
Things are starting to feel more normal here. I watch the kids play and interact and think, "So this is how they would act if things were always normal/" Just kids being kids. Something of an abnormality here I guess. We have gotten so used to Samuel being sick or hurting and our lives revolving around that that it seems strange that he doesn't need much support other than food at this point. All the IV things are stopped for the time being. His port is out so he can bathe normally. He wakes up happy, plays all day long, colors pictures like there is no tomorrow, works on his letters and handwriting. He is apparently ambidextrous because he writes well with both hands. His handwriting is better than Daniel's. His memory is comparable to an elephant, he never forgets anything he hears, sees or learns. He and Anna play all day stopping here and there to fight, make up and play again. You know, what normal kids do? It just seems odd vs. the nightmare still fresh in our minds. Life right now is lovely in comparison. I could really get used to it. We are looking forward to some better weather, spring and more family outings. Perhaps a jaunt to my favorite place on earth. We just want to live a little and shed this awful nightmare for good. I would like to add to that blissful three months we got last year. A good hundred years will be a nice start. Praise God for continued restoration here and joy!
2/17/08
We took the kids up to the school to play today. Everyone is tired of being stuck at home, only leaving to go to the store. Samuel is pretty happy to go anywhere though. He asks if he is well enough to do XYZ often. He asks about his red cells and platelets and I remind him to TELL his body to make them and ORDER his cancer demons to get out. He thinks about it often. He asks when we can move to a new house and we tell him, "As soon as you are better." He says, "Okay, I will get better." Never underestimate the power of the mind. The cashier at Fred Meyer asked Samuel how he was doing today and mind you, the cashier doesn't know Samuel. Samuel said, "I am doing better, getting rid of the demons." I am sure the cashier was confused.
He had such a great time playing today. He rode that big wheel like a pro. It was the first time he was able to really ride it. He was racing around the playground. I admit when RN Susan gave it to him I wondered if I would ever see him ride it considering the condition of his body at that time. He also RAN around. I kept waiting for him to fall down but he was careful not to "waste his platelets." I was holding my breath waiting for it..... Today's trip was quite a difference from the last time we were able to go to the school sometime in July or August. He was tired then and while he was happy to go and play, he did not want to stay long. Today he was unhappy to have to go home. He was far from done playing. His energy is amazing and you really see the difference when you go do something you haven't done. I haven't seen him run like that since before the relapse last June. He just hasn't felt well enough. Of course he was tanked up with breastmilk before we left. Mark and I were just amazed to watch him run around like any other normal kid. It is still surreal in so many ways.
Our donor, Asha, probably sent 60 or more ounces and it is almost gone. We basically made it Samuel's primary food and drink for two days. We will run out tonight which is going to suck but when it is in my fridge, we will use it as fast as we can. We will get another batch at the end of this week. The difference in his gut has been the biggest change. The first thing that happened was similar to gut clean out. he pooped a lot. Then the poop really became formed. For the past tow nights, he has only pooped once in the middle of the night as opposed to three times which is more usual. It seems to be really healing his gut and helping it function better. His cold has not progressed beyond the stuffy cough and slightly runny nose. It is not holding him back. But he just should not be sick so we hope he will get rid of this quickly. Asha called me to find out how the milk was working out and if I wanted her to take anything supplement wise which would benefit Samuel and her baby as well. How cool is that? She was shocked that we had almost used it all but as I told her, we would not wasted a drop, and we haven't. It is certainly the closest thing to a white cell transfusion Samuel will ever get safely and we are so thankful to her for this.
The MD I spoke with this past week in VA sent me a note tonight with some rec's for Samuel. One of the things I asked her was for a remedy for scar tissue which might help dissolve the anal stricture. So I received that recipe. We will see how that works..... Nothing works if you cannot get Samuel to use it. She also had some rec's for Samuel's iron overload as well as rec's for certain nutrients he is getting now, but needs in a more stabilized and measurable dosing which will help his gut function better. That and help his immune system work better, duh, the gut and immune system are tied together. She is one of a handful of MD's in the US who support the research for glyconutrient's. The company she recommends has a program for medically fragile children to get these products for a significantly reduced price and allows sponsors to donate to the child's account to help relieve the parents of the costs. We applied, and were contacted immediately and they have agreed to supply the products indicated by this MD so that was exciting. If you feel led to sponsor Samuel for Manna Relief. you can get more info here They will provide the specifically tailored nutritional products for Samuel's needs at 75% off retail! and they are the only company I have come across who does this. Everything else we pay for is at retail pricing. Samuel is qualified for the HOPE program but we need sponsors to get us going and keep us going as I cannot pay the start up cost of $125 until we get our tax return back. You can sponsor Samuel by clicking on this link and using his Case #8578. You may make a one time donation or sponsor him for six months in any dollar amount. All sponsorships are tax deductible. Samuel can receive the products at the reduced cost indefinitely. Thanks to anyone who considers helping. We are excited to get going on this because ultimately, getting Samuel's gut healed and working will lead to his cure. Cure is my intent.
We have decided to forego labs tomorrow since Samuel's labs yesterday looked so much better. Seeing them too close together has never been a good thing. Knowing his PLT and ANC aren't crashing is all we need to know at this point. So RN Kathy, in case you did not get the message, you can skip us tomorrow. Samuel has had his port out for the past two days now after having it in for over three weeks again. When RN Nellie came yesterday, he had knocked it out playing so hard. It had to be taken out and redone. So, another several days port free will be good for him. He is getting another haircut too. He is a bit shaggy. I imagine that all the heparin he has been getting hasn't helped the PLT any so I think that will help them go back up by Thursday as well. I imagine that our Onc clinic will just be flabbergasted by the labs when they arrive Tuesday. My Onc just cannot wrap his mind around Samuel's body NOT allowing the blasts to take over. Every time he talks to me he asks if Samuel is having bone pain.... I have stopped asking him for his opinions because obviously he just doesn't know what is going on and does not put too much thought into it either. We are just taking one GOOD day at a time and enjoying every minute we can expecting the best is yet to come.
We will see our GI on Friday and I think she will be impressed with Samuel's weight gain and appearance. I hope that Thursday's labs show more cell line recovery and more RED cells for sure. We should also be on the schedule for another sedation and anal exam. She was planning to scope his lower bowel at that time as well. I imagine things are looking MUCH better in there though. Samuel's poop has been perfect for about two weeks or so. He was 41 pounds on the scale tonight! I think his body has stopped growing since the relapse though. I will have to check and see. I was thinking I will ask the GI to show me how to find his spleen assuming it is still enlarged so I will have that knowledge for future reference. His appetite is certainly still not affected. he is just starving and whatever we are eating he wants to try. That is new. His ribs no longer protrude, his poor little butt wrinkles are starting to fill out and that no longer looks like a prune. His arms and legs are gaining back muscle tone and while I hope he will gain another 5 pounds, it might be just a couple more for the time being. Anything is better than 34. That was scary. Glad we are beyond that.
Mark is off tomorrow, paid holiday, gotta love that. We enjoy every day he is home with us for sure. Samuel wants to go to the park. The weather seems to be co-operating and I am excited to see if he can ride his big wheel around the big paved square. Last fall he could barely walk the square. I think he will want to play soccer a little as well. Praise God for good things to look forward to. Praise God for healing and restoration. We are seeing it manifest. Praise God for putting people in our path who all pay a part in Samuel's cure. We are so blessed.
2/16/08
WBC 3.9k
ANC 1764
Blasts 2%
HCT 29.2
PLT 101k
LDH 246
Ode to the power of breastmilk! That is the biggest climb in two days time we have seen with Samuel's red cells. Everything is going up but the blasts so we are thankful for that. Interestingly enough both his uric acid and phosphate are low. Lowest I have seen in a long time. Both of these going up have previously meant cancer cell turnover. So seeing these lower than normal makes me think there is nothing really intrusive going on in the marrow. Other counts are going up and though they will probably still fluctuate, Samuel continues to be radiant gaining more weight and strength by the day. It seems obvious that we will hold MTX until we see the PLT and WBC go up quite a bit more. The Onc and I seem to have a difference of opinion on the steroids and whether or not to wean Samuel off. Up until this point, Samuel's body seems to have needed them to gain the lost strength from the past nightmare of months but it is looking like the ride is stopping quickly. I am not seeing the benefit of them at this point and think they are actually holding his immune system back from responding both to his cold and his cancer. Our treatment works by allowing the immune system to attack it's cancer but steroids suppress this response somewhat. So we are tapering them and hope to get him off as quickly as possible. I am sure my Onc will be impressed but as Mark says, "He can either agree to do it our way, or we will do it our way." For now, we are satisfied that Samuel's blood looks better than before and thankful for the additional nutrients of liquid gold. May the gold continue to nourish the blood and help him kick this cold. It is certainly not slowing him down any. And with that, it is late and I am going to bed.
2/14/08
Today's Labs
WBC 3.6k
ANC 1544
Blasts 2%
HGB 9.4
HCT 28.3
PLT 90k
LDH 222
RN Kelly was not thrilled to call me with these labs. I have only one word. Methotrexate or MTX. Obviously he is absorbing it. Obviously it is affecting ALL the cell lines. It is hard for the clinic to believe that this tiny dose could do so much but I still chalk it up to a weak marrow. We will see labs on Saturday to be certain the PLT are not going to tank any further. Unfortunately, the nadir for PLT is between days 5-12 and Samuel has three doses of MTX on board now. So they may even drop more because his marrow is not strong enough yet to compensate. It seems to me that some adjusting of dosage is going to have to happen, or some skipping. And as for the blasts...... Now, Samuel is catching a cold that Kaysha brought home from Mark's parents house. So when they were noted, I was not shocked. Samuel's cough is back and I hope it stays at that. Kaysha has been miserable this past week with a yucky cold. That makes three colds in three months of which I caught two of them. I am hoping to NOT get this one too. And Samuel getting sick is not what we need either. Having MTX kill so many of his good WBC's just seems to have caused blasts to pop up again in response to now NOT having enough to fight off a cold virus. So in short, the blasts are not our biggest concern, we just hope that his WBC is not going to crash further and take the PLT along with it. If he is this sensitive to MTX in small doses, I am glad we did not opt for a big IV dose or anything stronger. Mark and I are certain about how sensitive Samuel is to the drugs, but I still think our MD's are clueless.
It is nearly 11pm and it is just me.....and Samuel. The past few nights have been like this. He is the first one up, and the last to go to sleep. He feels great and it is obvious to everyone. These days I am having to tell him to settle down and that is saying something compared to where we have been. Tonight I had to tell him that his PLT are starting to get low and he will have to be more careful. That did not go over too well since he does not want to slow down. It is really fun jumping on the furniture, jumping off the furniture, running up and down the halls, playing dinos and head butting people, and his latest thing, jumping on his bed when I am trying to put a diaper on him for bed. Yes, he is a spitfire. He actually reminds me of 2004-2005 before the ileostomy was taken down. He was full of energy to the point of embarrassing especially at the Onc clinic where all the kids came in looking half dead and he was running up and down the halls full of energy. This is the kind of vitality we have been waiting to see and we are seeing it. He is literally running off his calories. He is stuck at 39.5 pounds.
Some exciting things have happened this week. First, thanks to RN Kathy, we finally have a breastmilk donor who is giving Samuel her fresh, not frozen, milk. Frozen milk loses all it's live cells and those are the ones we need. And it could not have come at a better time than now especially if Samuel is losing WBC's. He was never neutropenic when I was able to pump milk for him daily so I am very excited about this. Not only is he getting WBC's which the majority are neuts, but he is also getting digestive enzymes, probiotics, and tons of nutrients he will need to fight cancer. Do you know that adults with cancer get on waiting lists just to get a few ounces a day of pasteurized breastmilk? And they do it because they experience the benefits of it. We are very lucky and thankful to have found someone who will donate their fresh raw milk. Special thanks to RN Barb and RN Mary for getting it delivered to us tonight. We don't know how long we will receive, but consider it liquid gold. Watching a body come alive with the addition of breastmilk is a thing to behold. Especially if it is a child who is not normally fed breastmilk. They just radiate. Samuel already looks great but tonight he has been taken to an even higher level. Something interesting about breastmilk which will help me feed and nourish him better is that the longer it sits in your fridge, the more the enzymes become active. I used the milk tonight as part of his digestive formula and did not even need to add the extra enzymes I normally do. It did this job well. This is especially useful when feeding raw fruits or veggies as a juice because they are digested more completely with the fats and enzymes in the milk. Breastmilk contains high concentrations of immunoglobin IgA which just so happens to colonize the gut and lungs. Perfect for Samuel's needs. Hopefully, it can stop the lung issue for good as well as halt this cold. Neutrophils in breastmilk are more vicious to invaders of the body than blood neutrophils are and it is the neutrophils which help kill cancer. Breastmilk is very hydrating. The circles under Samuel's eyes have gone away tonight. He usually always has them. Our GI says she sees it a lot in kids with no colon and she did not know why it happened. My guess is that there is no colon to soak up that last little bit of water so the person always looks a little dry. So many uses, so little time. Thank to most to our donor, Asha! We feel very very blessed tonight.
Another interesting thing to happen this week was that a visitor to our business site contacted me for a business related venture but also happened to know an MD in VA who specialized in Internal Medicine BUT was very holistic in her practice and has treated many cancer patients. This MD contacted me today and we have a lengthy conversation about Samuel, what we are doing, what we might add, research, etc. I haven't left many stones unturned in his care but one thing she did bring up was some chiropractic things which might help with his oxygenation. So I will look into this here. She was quite impressed with his regimen as it stands now and felt like we are doing all the right things. She said that if she ever got cancer, she would NEVER do chemo. She would feed herself instead. She had a hard time believing that our Onc has little concept of the gut and how it affects immunity. "Do you know how many immune functions start in the gut?" Well, I do, but I am not sure many Oncs do. And probably one of the most interesting pieces of info I received today was the number of cases she has seen where the patient has had some infection or virus and had blasts show up on their blood work. BLASTS. According to our Onc, you should NEVER see blasts in a healthy person's blood even if they were really sick. Yet this MD says she has seen countless cases where this was the case, fix the underlying issue, blasts go away. I have suspected this to be the case with Samuel and certainly he has many underlying issues to be worked out. But as I told her, the thought has crossed my mind on several occasions that we could keep the leukemia suppressed with diet for a good long time. Eventually it would starve out. This MD thought that leukemia relapsing was a very rare occurrence, and yet I wonder why I know so many kids who relapse.......... Or worse yet, relapse and relapse and relapse and then eventually die. She thought that once the leukemia was gone, it was gone and that makes me wonder then if it comes back after it was previously gone, is it a symptom of an underlying problem? There is a lot of alternative research that says this is the case. The trick is to find that underlying problem. Thankfully with Samuel we know where to look. And I imagine finding that underlying problem before the blasts are out of control would be another factor to improve the success rate. I was impressed very much with this MD especially giving her time to us based on a stranger asking her to. Neither of these people know me. One found us through a search and asked the other to call me. Certain things fall into your lap and you just know it is a God thing. Just more info to help us do what we are doing. She could not believe that our MD's here are not more interested in what we are doing for Samuel.
God has been really good to us this week. We are even thinking of taking a short hike. We think Samuel will be able to walk just fine! He needs an outlet for all this energy he has. Praise God for continued wisdom and help from angels on earth. It is exciting to see things come together at the right times.
2/11/08
Today's Labs, Believe you receive and it WILL manifest.
WBC 6.5k
ANC 2275
HCT 29.5
HGB 9.8
PLT 127k
LDH 238
NO blasts today. Praise God, He IS faithful! Either that or RN Kathy is REALLY good. I told her to remove the blasts from today's labs after she drew them, LOL. Samuel's reds are slowly trending up which we like. His PLT are slightly down, but not a big deal knowing he has MTX on board. The clinic is pleased and isn't it interesting that we get his gut working well, he is gaining weight, his vitality is amazing and we stop seeing cancer. Oh, we know it is still taking up residence in the marrow, but NOT seeing it in the blood is a step in the right direction. Best of all, we did not have to bottom out his counts to see it go. Today is a good day, a God day. A day of praise for what we have continued to believe was coming. I have left a message for the Onc that we wish to switch back to oral steroids and then taper off over the next week. While they are not a problem for Samuel, I don't want him to be on them indefinitely. More of a week pulse every so often I think will be better for us all.
Samuel is having yet another great day. He could hardly sit still for his labs to be done. He just wants to play and play and play. Let it be so. I will take another 100 years of play. Whatever it takes, we will do it. Praise God with us tonight for another victory!
2/10/08
Samuel is doing great. Tonight he was running around like a mad man, jumping on and off the couch, literally rolling on the floor laughing and trying to provoke anyone to chase him around the house. I ask him, "What is wrong with you?" He just falls down laughing. Kaysha says, "Someone put him on steroids." Now there is our family humor for you.
The steroids have not been a problem. His only food craving has been bananas. One day he ate four. I am not sure if it is the steroids or his body knowing it needs the potassium. It is a good food. Nourishes his yin, gut and alkalizes his blood. He wants banana bread tomorrow. We will see what we can do. He has had a few instances of wanting one food and you provide it, then he does not like it anymore. Well, I have a cure for that. Hook him up to his food, problem solved. I think we will be ready to switch the steroids back to oral this week and really hope to be weaning him off soon. He has been on them far too long in my book but we shall see what the labs show tomorrow.
Samuel's color does not look great. He shows no signs of low platelets though and we would notice given the amount of throwing himself on the ground he has done. I did get some of the blood vitamin levels back Friday. His B12 is high, folic acid is pegged in the middle of normal and iron is really high. Unfortunately, blood transfusions can lead to a very high iron level which your body just cannot easily rid itself of. If you are an adult, the best way to lighten your iron load is to GIVE blood. If you are the recipient of the blood, you gain someone else's iron load. Most adults who eat meat carry a high load of iron. It can accumulate in the bones and joints and most interestingly in the spleen. Samuel has a high concentration of iron but his body is not able to use it all. So, in the grand scheme of things, his body has all the building blocks for making red cells by diet. These key nutrients are usually low when there is malabsorption in the gut, so I would say we are on the right track there. Obviously, he will pass the 40 pound mark this week if he will take a break from running all the calories off. So the lack of enough red cells goes back to the marrow or the chemo. Certainly we should know more tomorrow.
It is almost 10pm and Samuel is still NOT tired. And while he has been getting better by the day, it still seems weird to see him being the first one up, the last to bed and the die hard who just cannot stop playing, laughing, joking and enjoying life. Regardless of what the paper says tomorrow, we are watching his body be restored once again. Praise God for restoration.
2/7/08
Today's Labs
WBC 6.2k
ANC 2788
Blasts 5%
HCT 28.7
HGB 9.5
PLT 158k
LDH 211
WBC is down, blasts are down. Everything is down actually, some good news, some not as good. At any rate, things remain stable improving slightly. The HCT is not impressive BUT both the 6MP and MTX can destroy RBC's and PLT''s. While in maintenance, this is not such a big issue because the marrow is supposedly purged of blasts by then, but when you know the marrow is not producing normally, it seems to be a different story. At least that is my take on it for the time being. Nothing needs transfused and we will always praise God for that. Samuel has not needed a transfusion since 12/30/07. That is a blessing for certain. Samuel is also getting Artemisinin which can drop the red count when treatment begins and then it recovers by day 14. The funny thing there is that he has been getting this for months and I wonder if it is only just now being absorbed. I don't know which thing might be bringing the red count down but I do not believe it is the blasts. We have dropped them from 490 per ml to 310 per ml in a few days whereas the week before kept them pretty much equal. Something is working.
I did talk to the Onc today and asked him to order fluids to include potassium now since Samuel's potassium is still low in spite of even more supplementation. I am going to assume the cesium is just taking it up like crazy at this point. The other thing that is now clear is while Samuel's gut is SO MUCH better, it is still not 100%. Yes, he smells like garlic and maple syrup, but given the beet test, his poop is still beet colored. With the stomach acid, it has previously not been evident when he got beets so I know based on that that there is still a ways to go. I did not think it would improve overnight, obviously, but at this point, let the beets be my guide. This may be why his potassium is not being fully utilized as well. Adding it IV should help in the short term. We also hope that this will help with his continued lung irritation. His lungs have improved a lot, but the irritation continues to come and go. I don't like it. My other thought that I shared with the Onc today was that I just don't think we will see the blasts go away until the gut is righted. And with that, Samuel's lungs should follow suit. Extra hydration should help keep things moving and healing. The Onc did say he was able to feel his spleen at our last check but it sounded like it was the same as it was in early January. So, it is not growing, just not receding. The hope now is that next week we should see some results from the addition of MTX. If not, we will see about checking the levels of both it and 6MP but I suspect that they are just now being absorbed properly. The Onc asked if Samuel was having any strange aches and pains. Absolutely NOT! He is thriving today and just over 39 pounds and gaining! Praise God for that too. Samuel is having another great day!
2/6/08
Let the playing continue! Samuel just continues to improve by the day. He amazes me with his energy and growing stamina. it is hard to believe that just a month and a half ago, we were carrying him everywhere and he could hardly get up off the couch. Daniel even mentioned how much Samuel has been running around and noted that it was much better than him laying on the couch all day screaming in pain. Without a doubt, things were awful just a bit over a month ago. Today, things are so much different. Praise God we got through that. I never want to go through that again and I am certain Samuel would say the same. His energy and playfulness are certainly something we haven't seen in a long time and while I will still marvel over it for the next month or longer and drive you nuts about it, just know that things were that bad. All that screaming in pain has been replaced with laughing and joy.
Samuel and Anna play nonstop. He is back to his old schedule of getting up at 6am, sometimes earlier. He will crack his door open, look to see if anyone is up, then ask if he can get up if no one is up. Sometimes he tries that at 5am. He is up probably an hour or more before Anna gets up and sometimes sits and asks, "When is Anna getting up? I want her to play dinos with me." And all those dinos he has collected for the past almost eight months are finally getting the play they deserve. All these toys that just sat around and left us wondering if he would ever play with them again are being used every day. They both take naps but he only needs an hour to recharge and he is up again before Anna who takes two to three hour naps. At 9pm, she is obviously tired and he is jumping on the bed trying to con me out of putting him to bed. All the kids play games throughout the day together and many activities that involved one child now involve the whole family. Daniel and Samuel also play together a lot more than they used to, which was pretty much nil and I really like that. Anna has been a very good sport with the abuse that Samuel has given her all the while he was so sick. He took everything out on her. Now, you would never know any of that ever happened. They just play great together and miss each other when one is not currently up.
Yesterday when all the kids were playing dinos by being dinos Samuel accidentally pulled out his NG tube. He screamed like he was mortally wounded and I was trying to figure out who did it. Then I noticed his tube on the floor. He was so upset. It hurt coming out but he knew a new one had to be put back. Mark is usually the one to do it but of course it was 10am and Mark was at work. I let him play an hour and calm down and then sat him at the table for the new one. About a month ago, he somehow pulled the new NG almost completely out of his nose while sleeping and I put it back in........real slow. And he did not gag once. So I wondered if I put it in slow this time, if the same would apply and it would not be so traumatic. Well, I had it ready and here is how you can tell this is MY kid. He grabs it from me and says he will do it himself. And he did. He got it in past the gag reflex before deciding he was done. Hard part over. The rest went down slow and smooth and he could talk the whole time so no concern about dropping it into the lung. It was pretty impressive. I am sure the story will turn a few RN's heads. He was still not happy about the whole thing but it reminded me so much of myself thinking, "Fine, let me just do this sucky thing to myself."
I talked to the support person for the cesium protocol yesterday and he reminded me that labs may go up and down periodically. As he said, the ups and downs will start to even out. Certainly this one has not been as bad as the first time we saw blasts resurface. And as I notice every slight change in Samuel as if he were me, he is doing nothing but gaining more health as the days pass. And it seems to be happening quickly...finally! Tonight on the scale, he was just over 39 pounds and you can look at his back and see that his bones are not so horribly protruding. His poor little butt looks wrinkly like an old prune and even that is starting to fill out. I am certain he would be even heavier if he were not running off all these calories but by the same token, the weight he is gaining is quality muscle, vs. fat. And fat would be fine too at that point. His poop continues to be beautiful but his gut continues to be high maintenance. Enzymes, probiotics, cultured foods, etc but it is all coming together. It is becoming obvious that the Bentonite clay is keeping his gut on the right track. Things have really improved with it but go south if over 12 hours pass without it. He is getting more ml's of food now than he has been able to get since the summer and eating a lot by mouth as well. We have even been able to add the raw elements of his diet back with NO issues at all and that is remarkable considering just two weeks ago, his gut shut down. No more of this gut which just stops working for over half the day causing him to not be able to be fed. If his spleen is enlarged, it is not making his stomach capacity smaller.
The Onc has never called me regarding IV MTX. I wonder sometimes if he even takes this seriously. He probably figures we will just do whatever we want, and we will. I cannot wait around on him. Samuel's gut is working well enough now that we added it back orally at the dosage for GI and there have been no symptoms of it at all. We will see how things play out over the next weeks. Our hope is to NOT have to do any more than what we are doing at this point. Samuel is on a 75% dose of steroids IV and is just doing fantastic given the horror stories many go through. He had one emotional outburst yesterday that made no sense until I thought, "Steroids." That explains it. But they are few and far between and 99% of the time, he is just thrilled to be able to play, thrilled to be alive and feeling well. The cesium rushes are coming on stronger each day proving that he was probably not getting any for the past months and I will probably have to back off on the dosage a bit. Our recommended dose was 3ml a day and then as much as 5ml. He is currently getting 8-10ml. We will see labs tomorrow and hope to see the blast count going down, or gone would even be better. Things on paper are going to have to start lining up with the boy we are watching getting healthier by the day. In the Name of Jesus, we expect to see things line up with God's Word for Samuel's life. We expect him to live his life and we expect to HAVE a life. Soon! We are so thankful for each and every GOOD day. Today has been one of them. Praise God that He never lets us down, never goes against His Word and honors His promises to us. Praise God, I don't have to leave Him a phone message he never returns. He answers when I call. It is the hope in our God that calms my spirit and reminds me that no matter how long this plays out, Samuel IS healed.
2/4/08
Labs Today, not worse, stable, slightly better?
WBC 7k
ANC 3150
Blasts 7%
HCT 30.2
HGB 10.1
PLT 175k
LDH 220
While the blast % is up, the actual blast count is down a bit overall. Really, it just looks stable at this point. The PLT going up a bit is great news though and it was foreshadowed by Samuel's line being pesky this morning and I always take that as a sign of more PLT. Samuel's WBC and Neuts have calmed down a lot compared to last week's values and we totally attribute this to his gut being better. This WBC and ANC going down is exactly what we wanted so whether it be because the gut is better, or the WBC's are being suppressed a little, it is all good. I am certain the LDH is down because his gut is better. There is still cancer activity to be sure, but I still wonder if it is not part of the immune response to the gut from a marrow which is not completely purged or healthy. Samuel's HCT is pretty much just holding which we will take for the time being. He has had about 72 hours of good poop with only a small road bump yesterday. His potassium was a little low today which I found most shocking given the amount of bananas he eats. So either the cesium is being absorbed well and driving it into the cancer cells or neither one are still being absorbed at all. Hopefully, the first is true.
Samuel continues to do wonderfully! We are thankful that the cancer remaining has not crippled the other cell lines and pray that it won't. I left a message for the Onc to call me about IV MTX. At this point, it is the lesser of all evils and will buy us more time to get Samuel's gut working better allowing his non-toxic treatments to work. We just DO NOT want to be in a position where he needs transfusions, loses his good WBC and becomes neutropenic. His body has just barely started to recover from the last attack. At this point we feel it is prudent to try to help purge the marrow as quickly as possible so we will stop seeing blasts whenever Samuel's immune system is activated in a big way. If we don't get anywhere with that then we will explore Cyclophosphamide. I hope we don't have to though. As I said in my previous update, he is doing so well now that one could forget he even has cancer. Regardless of what the paper says, he is doing well and even finally showed a weight gain. He was up to 38 pounds. We actually saw 34 pounds about a week ago so while it is not the target 42+, it is much better overall. We haven't seen 38 pounds in quite some time.
We continue to believe that Samuel is healed regardless of the paper, negative people, and unique problems that he faces. We believe that in treating his body as a whole vs. just poisoning the cancer, we will overcome. All things are possible to those who believe in God. We believe. I was reading scripture today, Jesus told many who came to Him for healing that "You will have what you believe." God impressed on me at that moment that you WILL have what you believe, whether it line up with the Word or whether it does not. Each day we choose to put our faith in the Word for Samuel's healing. Whether it manifest in the natural today, next week, or next year, we trust God to do what his Word says in honor of our faith. Something I read this past week was that it can take up to five years to eradicate cancer when you treat the body as a whole. Cancer does not just show up one day, it can take years to manifest. Our Onc has read cases where leukemia cells were found in fetuses prior to birth. This did not just happen over night and won't be cured over night. If it takes us five years to kill this off, then that is what we will do. We will be thankful for each and every day of it because we will have our boy and by God's grace, promise and mercy, his body will be righted in a way that will be nothing short of a continued miracle. Praise Him for that. We look forward to that day!
2/2/08
Samuel has almost reached the 30 hour mark of PERFECT poop. Yes, you read that right. He smells like maple syrup and veggies. He clearly had a cesium rush today and continues to feel great. While we have seen improvements in his poop this week, none of it lasted longer than about 12 hours before going back to sand so we are pretty happy right now. Thank you for your prayers for Samuel's gut. Is it the new anti-inflamatory herbs? Is it Bentonite clay? Is it just time? We will never know but I praise God for such a quick response.
We saw the GI yesterday and I brought a page full of questions which we went through line by line. I have to tell you it is refreshing to have a conversation about the gut with someone who understands it better than I do. I cannot say that when I speak with my Onc. I am certain I understand the gut more than he does. I brought Samuel's latest labs along for her to see and add some insight. Samuel has a lot of immature or broken red blood cells showing up on his labs and while his HCT is not terribly low, I need to know if his marrow is just unable to produce one correctly due to cancer, or if it is unable to produce because of a nutritional issue. I know what the answer would be should I ask the Onc about this...."Oh, that is just the cancer taking over."
She thought that his chem panel was impressive given the amount of issues he is still having but after I explained the massive amount of enzymes it has taken to get here, she understood that his body has been aided. However, his albumen is great at 3.7 currently and this tells her that while he may have inflammation in the gut, it is not higher up in the small intestine. So that was new info for my brain to store for future reference. She mentioned that her patients with ileostomies did not have electrolyte issues and did great. I told her that Samuel did great then too, seemingly better than than he does hooked up. We were so excited for his gut to be reconnected and thought that would make things better, and it hasn't. Things have been worse on many levels other than the bag falling off five times a day and leaking poop everywhere. So, it all comes down to his five inches of colon. My best guess is what the ND told me a year ago. This part of his gut along with the terminal ileum is over absorbing as a compromise to what gut is missing. Using the ND's treatment plan for that time now has really turned things around. We have been using the volcanic clay for the last few weeks but things really seem to have taken hold in the last day. The GI ordered all the labs which check for vitamin deficiencies and a stool sample to see if he is passing any blood causing his HCT to be low. So we will see how these come out and make adjustments as needed. We had a good long visit and I got all my questions answered. There is no treatment plan at this point until after the lab results come back. And she is planning to do another scope and biopsy in four weeks when she checks his size again. There are some other tests we can do to see how his absorption is doing but these are pending the labs as well. If things continue to go this well for Samuel, I would think we will know if the red cell issue is diet vs. cancer with the next set of labs. I told my GI that Samuel's cancer treatment will fail if we do not get his gut working again. If I did not think his treatment plan had a good chance of keeping him alive, I would let him go because at this point, this is no life for anyone. I believe that his alternative treatment can work if we can keep his gut functioning well. Apparently the devil is quite worried that the alternative treatment might work as well or he would not try so hard to keep coming against our plan. When I look back at the events of the last now seven months, I cannot believe the obstacles we have overcome. Samuel continues to be nothing short of a miracle. The GI was almost in tears when I told her all of this. Hugging me as I left, she vowed to do everything she can to help Samuel. I think she is by far the most intelligent MD we have and her opinions are worthy of consideration.
There was some not so good news however. She mentioned that she noticed Samuel's spleen was enlarged ten days ago and it was yesterday as well. She thought it could be full of platelets which sometimes happens with severe gut issues but it can also be full of leukemia. Samuel's spleen shrinking at the beginning of January was a great sign. It enlarging is not. It does not seem to be affecting his stomach capacity and it very well could so I will take this as something good in light of the news. Samuel has been able to eat more and more each day both via tube and mouth. Other than that damn piece of paper, every part of his body is showing increased vitality and one could forget he even has cancer lingering when you see him IRL. I just don't see it. He can run, jump, and dance with no sign of bone pain. His stamina for running around play is increasing by the day. Mark and I still take a moment when he gets up in the morning and is busily playing with Anna running all over the house. It has been just about a month that he has felt better from the misery of December and November and we still are not used to him just running around happy.
RN Kelly called me last night on her way home to say that the Onc was okay with us doing IV MTX at home after a few doses are done in clinic to be assured Samuel does fine. The dosing from the GI, however, was significantly lower than what the Onc suggested their GI's do so we will wait and see on this one. If labs are not improved on Monday then we will have to make some quick decisions that I personally don't want to have to make. But we do not want to lose any more ground either and it may well be that a round of Cyclophosphamide might help nuke what is hiding in the marrow enough to buy us time to get Samuel's gut working more efficiently and steadily. I cannot actually fathom going in for chemo but this one I know was not a big deal in the grand scheme of things. It was Induction chemo that we wish to never see again. I just pray things look better Monday or at least hold what we have as far as PLT and HCT go. In my research from today I came across an eclectic cancer treatment article which said that when the body's vital organs were functioning properly, meaning liver and gut specifically, cancer was halted. But when the vitality of these organs was compromised, the cancer took on a life of it's own. I think we have seen that first hand. I hope and pray that as Samuel's gut continues to improve, we see all signs of cancer once again halted.
I spent some time sewing this afternoon and Samuel sat on the couch across the room singing all the Land Before Time songs to me. Could the day be any better than that? Only if we could go somewhere fun I guess. Thanks for all the continued prayers, please keep them going as things here change on a dime frequently. For now, we are enjoying real poop. Yes, our lives revolve around poop. Praise God for good poop, and my miracle boy who IS healed regardless of what the paper says. We know what the Word says and we thank God for having the final authority on life and death.
1/30/08
Today's Labs
WBC 10.4k
ANC 5312
Blasts 5%
HCT 30.6
HGB 10.7
PLT 158k
LDH 297
Labs today would be fine in my view if you could either NOT have blasts present, my first choice, or NOT have a decrease in the PLT. The very last thing we want to see happen is to become transfusion dependent. So we hope that this drop is just a part of the healing going on in Samuel's body right now or from steroids. Basically anything but the marrow stopping their production. The HCT going down is expected given the gut issues so that is not bothersome. The LDH is actually down a little as well and his phosphate is still "low" which still is a good sign. At any rate, these are a let down and I have to keep reminding myself that life an death is not in the numbers called to me today but rather in the Word of God. We KNOW there are blasts in the marrow. We know it is not completely purged. It is one thing to know it and not see evidence of it and another to see it on paper. And it is another thing altogether to see it affect the other cell lines. We rebuke this right now in the Name of Jesus. We do not want to walk down that path again. At this point, we will most likely not see labs until Monday. Not much changes in a few days time. We will see our Gi Friday and probably decide about starting IV MTX based on the Gi's dose recommendations. Someone from her office called me to adjust our time slot from 30 minutes to 60. Good plan because I am going to have a list for her to go through.
Samuel continues to do great, feel good with lots of energy. We like that. The cancer hiding out is not manifesting in a way which is slowing him down at all. We do not plan to allow it to either. His gut continues to do whatever it wants however. Each of the last days has given us the rainbow array of poop consistencies with turds always being among them, but not enough to jump up and down over. But his motility is better and he has been able to eat more with his mouth as well as handle more through the tube. I have done a few experiments with food to see how well things are being absorbed. Certain foods are obvious when he has been fed them. Garlic. That should go without explanation. We have always enjoyed juicing him fresh garlic right before doctor visits just to see them get a whiff. It is quite humorous! Samuel has had garlic this week and we do not smell the evidence. Another dead giveaway is fenugreek. It makes him smell from head to toe of maple syrup. It is also very obvious in scent as it stays on clothes and even makes his poop smell like maple syrup. The big kids have asked who ate pancakes in the bathroom in the past because it is so potent. LOL! He has had it for days now and just tonight Mark says he smells it in his hair. I smell it, but it is very slight. That is pretty telling given that with the amount of these two things he has ingested this week, we should all be gagging from the smell of garlic maple syrup. Somewhere these are NOT being absorbed and if that is the case we can then confirm that many other things are still not fully being absorbed. I don't know if it is only in the area of his colon and ileum which has adapted to act like a colon, or if the issue is still all over the tract. I looked up the chemical make up of cesium today and it is most similar to sodium and potassium which are both absorbed mainly in the colon. Bingo. Now we know why we haven't seen a major benefit from this again. I am certain that a month ago we were seeing the benefits of it, but I think that as we started opening his anus and asking his body to work properly, it got very irritated and swollen and all the absorption of this mineral stopped. Obviously missing a few days is detrimental at this point. Our hope is that with each day that passes and notable progress is being made, that this will right itself quickly now before we lose more ground. I don't know if my GI will have anything else to offer here that time will not solve on it's own. The thing is that time is working against us at the moment. We need to turn things around quickly and need your prayers for Samuel's gut to be restored immediately so that he gets the benefit of his non toxic medicines. There is lots of healing that still needs to happen here and we are taking his WBC and ANC as a reflection of the status of his gut. Lots of activity in an area that has been in crisis for so long. Time is of the essence and God has lightened the burden on my mind tonight as far as the labs go. I know that only He holds Samuel's future and the Word says he is to live out the number of his days. Samuel says he is not ready to go to heaven yet. Amen to that.
1/28/08
If you have missed reading updates the last few days and especially missed pictures this whole month, then today you get the bonus plan. Update and lots of pictures. I haven't taken many pictures this month because I am quite tired of the yellow couch pictures. Since we haven't been able to go anywhere and do anything, there has been little choice in the matter. Today, however, has been a lovely diversion in reality. Snow fell here this morning, only a few inches, but when you live on a steep hill, it is enough to keep everyone in the neighborhood home for the day and having fun. It occurred to me that there are few things that really unite people these days. One, the 4th of July. Two, snow falling when it is a rarity. Those who can stop to celebrate the occasion. Thankfully we like both occasions VERY much. No one came to get blood today and very few people left the safety of the neighborhood. It was really really nice.
Samuel got snow boots for Christmas this year since he is the only one here who did not have them. So him getting to use them and feeling good enough to do so was a treat. The kids were out in the back yard early this morning and Samuel was busily swinging. This is all he has wanted to do for the last month since he started feeling human again but the yard has been a big mess and we were not sure if he was strong enough to even hold on. We knew he would be okay today. The last several days have shown another huge burst in energy and stamina for Samuel. He was able to walk down the hill and short block to the park to play today. He did have to be carried home however, but this was expected. He ran, slid, made snow angels, ate snow, threw snow, and made a huge snowman. Cars on the hiway were driving by honking and waving at us with our 7ft showman in progress. It was a glorious escape from reality. Like a dream you wish you did not have to wake from, except it really happened and I have the proof. It was great for Mark to be here with us too.
We cannot really "afford" for Mark to continue taking days off. He has already missed two this pay period and will miss a half day Friday when we go see the GI and possibly tomorrow if the weather worsens. I really need to work to pick up the slack here but it is the last thing on my mind. Saving Samuel remains at the forefront of my mind and I spend hours daily reading, researching, making his foods, making his medicines, etc. Keeping him going consumes me and it is hard to just stop. It is. It is easier when things with him are going well, his gut is working, and labs look good. Being in what feels like limbo again just makes things harder. Today was nice in that respect because there was a real reason to take a break from all this to just stop and enjoy. I know God will take care of the difference here.
Samuel's poop keeps changing. He has had sand, granola and a few chunks here and there daily. But never a steady flow of good. This is not shocking given that I figure his colon is not working at all other than poop pushing through as it builds up. His colon, all five inches of it, needs to be retrained and this will take time. The best we can do is to try to keep him as clean as possible, meaning, not let the poop build up like it did previously. This takes a lot of work diet wise which is tricky because a lot of what he needs would absorb his medicines so timing is critical to getting things moving through at a better pace without compromising the absorption of his medications. Still working on that.
The Onc called today. Perhaps he noticed no labs were drawn and we haven't called. We had an all business conversation and planned to up the steroid dosing a bit but let our GI help dose the MTX and then we will use it IV as well. I am wondering if they will allow us to give it at home so as not to have to go to clinic once a week for a ten minute med. We will see. Of course the Onc was quick to say he is worried about "all kinds of things...." Whatever. I am certain he doesn't think about Samuel nearly as much as I do. He wanted to know if we needed anything. That is humorous given the events of the past few weeks. We needed something weeks ago. No help was offered. Why would I ask for anything else at this point? The call felt a bit like the testing of the waters. Still pretty hot but I am resigned to the fact that we will have to do everything ourselves just as we always have. We talked a bit about Cytoxin IV as it is the only other chemo I know Samuel tolerated okay. It feels like we need something to help purge the marrow faster so we will NOT have another setback. He of course thought that was a great idea. But this is on the back burner for now pending Samuel's gut working better. We do not need to add anything given that things are still not right. As I said in many previous posts, I will always fix the gut first. Everything else seems to follow suit after that. We will see labs whenver the weather improves and someone can get here. I am just thankful that transfusions are NOT needed. I pray we NEVER need them again.
Samuel is thriving in spite of his no weight gain. I told the Onc that we are just going to go based on vitality and he definitely has that. His energy is great, his joy is back and so is his smile. He can run and jump and he has no pain at all in his bones. I will take this as a good sign since his dose of Strontium to stop this has been cut in half for weeks now. He is ready to live and have fun. I was reminded today of the days back in May when the babies would be outside playing at 8am, and would not come in until naptime and dark. They were die hards for playing outside. I saw a little of that today. It was nice to feel like we might see that again soon. Make a Wish sent me a note this week. They wanted to know if Samuel still wanted his wish. Samuel has never received any of the "benefits" of being a child with cancer. There were never any trips, or big wishes granted. He was never physically able to do anything. Last summer I asked Mary to see if we could get a playground in our yard and they put it in as a rush wish since Samuel is "terminal" and all. But it did not pan out since he just got sicker and sicker. So we hope to see this done early this year. I think about it every time he wants to go out to play. The yard is so small, the mud is so awful and we were going to gravel last year but then the worst happened and all we could do was hang on for the ride. We want to gravel the play area, and put a small garden on the other side. Make a Wish can bring him a big toy of some sort and the days we are stranded here will be like days at the park for them. I will like that. We will see how things pan out this year. Of course, we had always talked about doing this when we got to the house we planned to stay at, but obviously it appears that we are staying here for an indefinite amount of time. If we don't do it now, we probably never will. What is best of all is that it will be something everyone can enj
