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 enjoy and when we go, we can just take it with us.
I praise God for days like this. They feel like visions of a better future and it is that hope that keeps us going. This has been a very hard daunting road for which only God can show us the way and give us the strength to endure. I needed a little extra help this week and He gave it. Thank you for your continued prayers for us all.
1/24/08
Today's Labs
WBC 9.5k
ANC 6175
Blasts 3%
HCT 31.4
PLT 219k
LDH 327
Phosphate 3.4
Uric Acid 5.3
These look hopeful that things are still going the right direction in spite of seeing blasts. I recorded phosphate on this for future reference. Samuel's phosphate was the first thing to go from being too low to being too high when things went south in September. It is great to see this low. The LDH doesn't bother me at this moment because I know Samuel's gut has a lot still going on. We would really actually like to see his ANC go down....a lot. This over stimulation is not helping his gut, lungs or blasts. We have used the IV steroids since Monday and they only add to the neuts. While it appears that Samuel's HCT and PLT have gone down since Monday, if you skip Monday's labs and compare to last Thursday, they seem right on target showing cell recovery. We are certain that Monday's labs were concentrated considering it took a liter of fluids to get him to make pee in a 24 hour period. That is bad. So, we breathe a little sigh of relief and give God a ton of praise. We have a lot of work to do but we praise God for continuing to show us the way in spite of what sometimes feels like insurmountable odds. This is where God thrives anyway.
So, we are hopeful that this is not a setback but perhaps an over stimulation of a marrow which has not yet recovered from cancer, or been completely cleaned out for that matter. Unfortunately the downside of Samuel's alternative treatment is that it doesn't just nuke the marrow leaving little residue of cancer. It slowly kills a bit each day. Some alternative cancer treatment plans actually advocate "debulking" treatment which means doing a round of induction chemo to get rid of as much cancer as possible quickly and then switch to an alternative treatment to kill the rest. With leukemia, this would be a good option except that with Samuel, it was the first month of induction which caused every problem we deal with today. Each time it seems the treatment has "failed" has been directly linked to his gut failing. Apparently we are the only ones who can make this correlation. So, we are heavily doing herbal therapy to heal Samuel's gut. Last year, it took three good months to get things from a very bad state, note, not this bad, to a very good state. I know the herbs work, but it is in the diet area where we have to be careful. It is more tricky to follow the cancer diet at this point but we are doing the best we can. Healing his gut is most important right now and we feel everything else will follow suit after that. One of the main things I am focusing on right now is stopping his immune system from overacting. This all goes directly back to the liver. Every time I have specifically dealt with his liver, we have had good results so this was not a shocking revelation. The liver regulates immune response by being clean and in good working condition. We know Samuel's liver has been burdened by the incredible load of toxic waste in his gut and have attempted to address this on several occasions. But unfortunately with the pluther of other issues he has had at the same time, it always gets shelved. Thankfully, I can do things for the liver and the gut together and the hope is to get his gut and liver back in harmony and see his immune system calm down. Steroids help suppress the immune system as far as lymphs go but we still have a huge amount of neuts to deal with. Steroids are a short term band aid on a long term problem. As I have said before, steroids have their own set of drawbacks which make us want to use them for the current situation but not as a long term solution.
Samuel still looks beautiful. I think a lot of the color we saw in him two days ago was still from concentrated blood. His energy is great, his joy continues, his pain is going away and today he is pooping REAL poop. The first several in a row that actually resemble poop. Yesterday was a bit off and we still expect to see things all over the place with that, but a few turds in a row are always a good sign. His appetite is coming back well but we have to be extra careful with what we allow him to eat with his mouth so as not to trip up the healing in the gut. He is unimpressed with his food choices. If he wasn't such a picky eater, this would be easier so he pretty much thinks we are starving him again. He has not been happy about that, but he is happy to not have fire poop. He still isn't old enough to make the correlation between food and the quality of the poop. We haven't seen any weight gain. We have seen weight loss but we hope it is just the remainder of the old impacted poop clearing out. I have seen a little of this again this morning but this afternoon, it has all been turds.
Yesterday I hit the wall. Hard. There have only been a handful of times I have really felt like I hit the wall during these roller coaster rides. Yesterday, I was physically ill. So sick that I did not get dressed, took a nap, and went to bed early. I felt just a hint of how badly Samuel had to feel back in November and December. I don't know why I got so sick other than the release of stress and heartache over this entire situation. It is just hard to imagine that we would come this far and lose Samuel. I just cannot imagine it. We are not quitters. We know Samuel is not a quitter. God is not a quitter. I hope I got all that toxic burden out of my body yesterday because there is so much that needs to be done to get Samuel healthy again. Trying to do this on a day like yesterday was horrible. Dealing with people who obviously don't take Samuel living out the number of his days as seriously as I do continues to frustrate me.
I talked to the clinic today long enough to get labs but still have not conversed with the Onc since Monday. There is nothing to talk about from my standpoint. He has had relatively little support to offer as a whole and I can be negative all on my own. The trick is staying away from the negative people makes it easier to stay positive and have hope that all our efforts will not be in vain. Praise God, He is still for us. We are looking forward to another non-medical weekend and will see labs on Monday. We pray and believe to continue to see cell recovery and Samuel's restoration in the Name of Jesus, AMEN!!!!!
1/22/08
The day went well for us. The GI found Samuel's anus again tight at 11. She said it opened up easily to 15 and at that point she could tell it was very tight. So, tonight Samuel is back to a size 17, pooping much better and is able to eat. For as quickly as the events of the last 48 hours came on him, this has quickly reversed, Praise God! This morning he was able to tolerate a clear feed before going to the hospital. He ate a whole banana on the way home and was fed again three times since. I went in with the plan to ask for an RX for Elecare, the formula Samuel came home from the hospital on three years ago. It is for short bowel and malabsorption issues. I plan to add it as a calorie boost to the food I already made for Samuel and especially while he is on clears to give his gut a break. The GI thought that was a great idea as opposed to TPN which we all gagged at the thought of. So I have been adding it to Samuel's clears tonight and it has been well tolerated. It is broken down to the point where all he has to do is absorb it and she has never had a patient NOT gain weight on it. So we are hoping to see a huge turnaround with the weight issue while giving his gut a little more time to recover. Hopefully just getting Samuel's anus opened up will also change the calorie loss. It has already helped with the mucus issue. That has completely stopped.
The GI said the mucus is white cells. Funny how the Onc did not know this. This makes incredible sense given his ANC yesterday was almost 6k! This is a whopping ANC. Samuel was usually in the 2k's with 3k's if there was some sickness. So it seems his body had an incredible response to healing his gut. The GI thought we were lucky in that Samuel only has five inches of colon and this is the major area which needs healing right now. It should heal much faster than five FEET of colon. His broken down butt had everyone gasping today and it had actually healed up a lot prior to them seeing it. The GI ordered a cream for him but they had to compound it and apparently no one was there to do it. Tonight, this skin looks even better. No more fire poop makes a huge difference. The GI was able to get out more of the poop stuck inside Samuel and then scheduled him for another dilation in six weeks. Mark and I might try to pass a 17 once a week, but not until his gut is doing well. Just messing with Samuel's anus causes his GI to not function as well so we might have actually caused the weekend events by having to dilate it so often in the past week and a half. As the GI said, it causes a lot less stress to the gut if it is done without the person flinching and trying to get away. This should have been done for us two weeks ago, under sedation. It would have spared Samuel the misery of having it done while he was awake, and the blasts showing up.
My hope is that the blasts are just a blip in the radar. Obviously, Samuel had a huge immune response to his gut dysfunction this weekend and I hope that in calling all the reserves, the blasts were just the last of the last. He had five or six other funky cells show up on his CBC Monday indicating a marrow stressed. We have seen this before too. Unfortunately, the problem which caused it was not corrected promptly and once the blasts came back, cancer was with a vengeance. We need to NOT stress his marrow. He needs his gut to work, his anus to stop closing down, his lung issue to clear up and to stay free of illness for a good year or longer.
I talked to the GI about Samuel's few conventional meds, which are also used for IBS. Steroids have been a huge benefit on his gut and the anti leukemia effect has also been good. 6MP is another one which we added back tonight now that we know it can get out of his gut quickly. We are using the same dosing as she uses for IBS. I am holding MTX waiting to see how the next days go and how things are tolerated. They use MTX as an infection to be certain it is absorbed. We can do MTX IV if needed but we will wait that one out for now.
Samuel slept great last night and felt great today. He had everyone entertained by his antics back in the OR and in recovery. The anesthesiologist was one who remembered us and Samuel came back to me better than he has in a long time. No angry boy this time. He was quite chipper in fact. He was running around the room and you would have never known he was sedated. No one was phased by his lung issue. His BP yesterday was 145/97 in clinic, obviously another stress reaction. Today back to 125/67 which is quite good for Samuel. His color looks great, like a HCT of 37. I know he is not dehydrated tonight so he looks just beautiful. When we saw blasts show up in September, all his other counts were already going down. Seeing him continue to get more color and energy keeps me hopeful that he won't have to continue to suffer the negligence of others. I pray that this is not another setback. He has suffered enough. We pray that Thursday we will see no blasts and counts continuing to improve. PLT seem to be a good indication of the overall picture. If they start going backward now, that will be a very bad sign. Previously we have seen marrow recovery with the bone marrow over producing cell lines. PLT in the 700k was normal for a long time. Please God, not another setback!
The Onc did leave a message on my voice mail today hoping we would let him know how things went. The jury is still out on what I plan to do there. I am pretty angry and he knows it. The surgeon at this hospital refused to do a minor procedure and that has now possibly caused a major problem. Our Onc should have jumped down his throat for being so dumb, but instead sided with his decision. Well, you know Samuel is just going to die anyway, why bother.........I am sure that is the rationale. At least that is what I was told about his "treatment plan" yesterday in plain English. It truly sucks to have not one person thinking we might actually win this battle.
I can do all things through Christ who strengthens me. No weapon formed against us shall prosper. If God is for me, who then can be against me? We do not bow down to Satan. Samuel IS healed. He IS a miracle. He always has been. He deserves to live. As I told the GI today, he just wants to be a little boy, he just wants to play. He wants to go to the park tomorrow. He just doesn't understand why it is not still summer. Is it too much to ask for just one person we have to deal with day to day to BELIEVE and treat Samuel as if he plans to live to be a hundred? Apparently so. I am tired of hopeless helpless people. In all this, we have never been hopeless and certainly never been helpless.
We thank you for your continued prayers. Anna is sick. She woke up with an ear ache. My cold has turned to a sinus thing and my head is just pounding. I don't know why I would expect to feel better asap with this cruel amount of stress AND anger. But I need to feel better. There is work to be done. There seems no rest for the weary.
1/21/08
The weekend was great right up until last night when Samuel started vomiting. After that, he started pooping yellow mucus. Just mucus. No poop, nothing else. Not good. We were up pretty much all night. Mucus burns like fire so his butt is completely broken down. We were hoping to get up and have him feeling better but the first clear fluid that hit his tummy had him puking again. More mucus poop followed. We figured he was either obstructed or had an ileus at this point. I called the GI's office but with the holiday, they were out. So I called the Onc clinic who said to come right in. X-ray shows ileus. Tons of air and water, and pretty much gravity moving his gut. On top of this bad news, there is more. I wish I could say I did not see this coming, but I did. Here we are on another 21st day of the month........ This one just so happens to be my brother's birthday. He would have been 37. This is his 9th birthday spent in heaven.
Today's Labs
WBC 10.9k
ANC 5995
Blasts 5%
HCT 35.9
PLT 222k
LDH 306
I just told my Onc last week that if we did not get this under control, it would cause a relapse. Here is is on paper. We are not happy. These numbers might be a bit concentrated because of vomiting, we do not know. At this point, Samuel's gut is not absorbing anything. We had a heated conversation with the Onc over this and the hope is that we can get his gut going quickly and this will be the end of the blasts. But this is how it all started in September. We saw a few and had about a week window to get it under control. We came home with IV steroids and hydration after spending the better part of the day in clinic on hydration. Samuel received almost a liter of fluid before he peed. He stopped peeing last night and is peeing a lot better tonight finally. He is also tolerating some clears now but it is coming out looking pretty much the same as it goes in, only mucus coated. All I can tell you is that the devil really wants him dead as he is shutting down his gut making it unusable at this point. Our hope is that IV steroids will buy us some time to get his gut going again. And yes, I am absolutely infuriated because yet again, all this could have been avoided. They know it, we know it.
We are going to Seattle tomorrow. Our Onc tried to page our GI but I don't know if they connected. His lungs are still junky although they get better and worse depending on the time of day. Obviously we need to have his anus opened the rest of the way and get her opinion on how to best get his gut moving again. TPN was discussed today but I really feel like that would be death at this point. Pumping in all that glucose will just feed the cancer. If things do not improve immediately, we may not have any other choice. Samuel has no reserves of body fat to survive another starvation of nutrients.
All his chems still looked great considering and I am really hoping that this ileus has been caused by the last of the impacted poop being cleaned out down to the mucus membrane. Once that happens, the membranes which were stagnate before are being asked to wake up and work and they are hopefully in shock. Things seem to be waking up a bit tonight although he is not digesting again. But things are moving through rather than being vomited up. We hope to sleep tonight, last night was harsh. Today has been even worse. Dealing with the news on no sleep is not helping. Our appt in Seattle is set for 1pm so Samuel will basically get another day of gut rest which we hope will help. He was hungry tonight so that is another positive.
We ask you to pray tonight that this is resolved immediately. I cannot fathom going through the last three months all over again. I don't know how we will do it. Emotionally, physically, financially. We will just lose everything and possibly our boy too if this is not halted now. Our Onc's thoughts are that the little chemos that he was/is on are just a band aid, not a cure. Eventually he will die. That is where he is. He puts no consideration into the gut, our treatment plan, etc. I need Samuel's gut to work. If it doesn't he will die. It is as simple as that. We know God is able to stop this roller coaster. We cast out every demon in our way and tell Samuel's gut that it WILL work and it will work NOW. In the Name of Jesus, Amen.
1/18/08
The chest x-ray showed "more bronchial irritation than I like to see.." according to the Onc. He did not want to call it pneumonia because there is no crack, but more wheezing. The abdominal x-ray shows there is still poop backed up. We have cleaned out the bottom part pretty well so I imagine this is why we are seeing more formed poop now, but the top part of his small intestine still looks impacted with not many air pockets. The bloating we have seen is more on the left, and the x-ray confirms that. The irritation in the lungs is also more on the left, also confirmed today. As I said previously, we have seen times where Samuel's body backs up somewhere and it goes to the lungs as mucus. Resolve the back up, resolve the lungs. This was not a foreign concept to the Onc. He did change the abx given that we are trying to keep our Tuesday slot in Seattle. We hope to have his lungs sounding better by then. I talked to anesthesia in Seattle who was unimpressed with the situation. Our Onc said they would have no problem sedating him in Tacoma....except that they won't of course, and Seattle said that just because Tacoma does it doesn't mean they will. Seattle has a lot higher standards than Tacoma, which can be a benefit or a drawback depending on what you want. We really would like this lung issue to improve but again, it seems to be a catch 22 with the gut. We hope we won't have to cancel this appt but we definitely will if we think they will not sedate. We certainly won't drive all the way there to be sent home with no help.
Our Onc was especially NOT impressed with Samuel's emaciated body. Apparently me telling him this for weeks now was incomprehensible until he saw it in person. Samuel looks terrible and I am not kidding. I think he finally got the point there. We did talk about the surgeon and what transpired Monday. He said he did talk with my GI but the surgeon still refuses. I asked him what exactly the surgeon does. He did not get the sarcasm and started to say that he is a great surgeon........... So I asked if he was going to be able to do a g-tube someday or if I had to do that myself too. He assured me that he can do a g-tube. We shall see. And only now did they decide to request records from Portland. Currently, there are only two Ped surgeons in Tacoma. The one who refused to take out Samuel's g-tube in November is injured and apparently the other one on staff was NEVER asked. Hmm. I will file a formal complaint next week about this, yet another situation where they dropped the ball.
I also asked for a GI consult in Tacoma since my GI's office has left me hanging now on four occasions. I called my GI's office weeks ago to try to get advice with Samuel's starvation and never got a phone call back. My GI only works part time and is not affiliated with Tacoma so it tends to be a PITA for them to connect. I still feel that she is the best GI for Samuel but at this point, we need someone on board who can be available to consult. So we are supposed to return to see the Tacoma GI next week. My main concern is that Samuel is NOT gaining weight at this point despite our best efforts. This may be now slowly turning around, but it cannot go on. I am not 100% sold on many of the MD's abilities in Tacoma to diagnose and treat, but will take all the opinions I can get and continue to make my own decisions. The difference between my appt today with the Onc in Tacoma and a similar appt with our former Onc in Seattle would have meant that someone would have been called to the clinic immediately to start the process of getting to the bottom of the problems and I mean all of them. We would not have been left hanging with no one stepping up to help. Of course the Onc in Seattle would never agree to follow our treatment plan and as I have always said; we went to Tacoma to be left alone. We go to Seattle when we need problems solved. My Onc admits he doesn't know about certain things and just leaves it at that. I guess he figures I will figure it out eventually, and I usually do. This would just be a little faster with a few more heads that actually went to school for this.
My Onc left our conversation today saying that we need to get his gut going again so we can get him some treatment. And he said it as if Samuel is currently getting NO treatment. I reminded him that he gets treatment daily, just not caustic treatment. Apparently he is under the impression that the miniscule doses of 6MP and MTX got us to remission. Anything to mask the fact that there are other options I guess. He actually told me on Monday that the surgeon was refusing to do anything to Samuel's anus because their first obligation was to "Do no harm.' I laughed and almost asked why then do they do chemo? Do no harm? What a joke. They do harm with their treatments, they do harm by withholding treatments, someone is in laa laa land here and it is certainly not me. I guess that is how they sleep at night, laa laa land. Drink a lot of alcohol and try not to think too much about anyone. I cannot wait for the day we walk away from this for good. I am sure the medical system is great for those who don't have abnormal unheard of problems but the fact remains that these MD's are SO busy treating patients that those who really need help now cannot get it. Whatever happened to curing patients, vs treating them? I will go for cure. Treatment sucks. Ask Samuel what "treatment" has cost him.
The NG tube came out just fine. Samuel freaked out over it though. It seemingly made no difference in the breathing issues though so that is good to know. He sat at the table this morning and let Mark put the new one in. It wasn't pleasant at all but he did not fight it. The worst part is not knowing if it is going down to the tummy vs into a lung. Midpoint, as he was gagging, I said, "Say something!" And he talked. Whew! They don't talk if it is in the lung. It is a sucky thing to do but he was less angry over that than the dilation process which we think we will be done with assuming we keep our Tuesday appt. It is just too stressful for everyone. We should NOT have to do this. It continues to piss me off but at least it has made a difference so the effort has been worthwhile.
We went to say hi to the ladies in Infusion today. They have not seen Samuel since his last platelet transfusion. We have spent a lot of quality time there and wanted them to know he was doing well. They were very happy to see him. It was nice to just say hi and not need anything.
We are planning a nice quiet non-medical family weekend. Praise God for that!
1/17/08
WBC 8.5k
ANC 5100
PLT 206k
HCT 30.5
LDH 250
Labs look good. On paper, Samuel looks great indeed. Praise God, this is day 27 without blasts. The HCT is creeping up, yeah! We keep watching that ANC go up, which is nice, but to me, is indicative that his body still has a lot going on. We stopped steroids yesterday and immediately his lungs got worse again. So they were helping a lot. We will start him back up on them tonight. My RX is for five days only so we tend to run out quickly and are supposedly taking 7 day breaks in between pulses. My GI figured they would "buy us some time" as far as the gut reaction went. His gut seems to be okay either way at this point, but they obviously were benefiting his lungs more at this point.
Seattle called to tell me the time for Tuesday's sedation. We are still unclear as to if we want to keep it. And then add on the lung problem which is worse again and might prevent it. This only adds insult to injury. In the last several weeks now, we have been dealing with the same problems over and over. So, we are headed to clinic tomorrow, bright and early. Chest and abdominal x-rays have been ordered. They have also called someone to come in and change the NG for us since it is most likely adding to the issues. We have decided we will remove it tonight so Samuel can have a break from it and see if he starts sounding better. Samuel says today that he would prefer his Dad to do the NG over a stranger so we will see how that works out in the morning. If it just becomes impossible, then we have a back up person in clinic. I am sure it will be just another NOT fun day for Samuel. I am hoping it will go okay for him whether we do it or someone else does because it would be nice if the NG was something he would allow us to do here. Mark used to do them almost weekly when Samuel was two years old, but now that he is an almost six year old, things are a lot different. So, we will be seeing our Onc tomorrow and so I am saving my questions and butt conversation for that time. I wanted to say what I need to say in person anyway.
Samuel's gut is working okay. Every poop today has actually been poop, not sand, not smoke, not fire. So that is good. But he definitely still looks bloated so we will take a better look at what is going on with that tomorrow. May just be sluggish for awhile as his body realizes that his GI can work again. Anyway, we hope to actually get a better picture of what is going on with Samuel's body tomorrow. Hopefully we won't need a General Surgeon.........
1/16/08
No one called me today. Apparently the Onc is not in the business of delivering bad news which makes me wonder why he is an Onc since that is all they do. I did not call the clinic today because I physically am sick again. The big kids got colds, again, and now so do I. So I felt pretty awful today and don't want to call when I feel horrible. I will get the Onc tomorrow when I call to get labs for the day and find out what transpired between him and the surgeon and go from there. It seems that my Onc has tried to get this done for us and my main issue is then with the surgeon there, however, the lack of communication from the Onc at this point only makes matters worse. A phone call to say that he really tried and the idiot is not budging would have gone a long way over having the RN tell me second hand not knowing much more than he just won't touch Samuel. Now let me say that if he just won't touch Samuel because of all the surgeries he did on Samuel in 2004 which ALL had to be revised in Seattle, I would actually respect that over saying he won't touch an anoplasty. I would not ask any one on the surgical team in Tacoma to do something I thought might have complications. This is why we do Neuro in Seattle. I thought Tacoma could do the simple General things we need, but apparently not. At any rate, our entire "cancer treatment" relies on his gut working and the fact that we still have MD's who don't recognize this after the last six months just infuriates me to no end. The fact that all this GI damage started in this hospital which now refuses to help infuriates me even more. I don't need any extra help being livid.
At any rate, after four days of "gut cleanout" Samuel is finally cleaned out and pooping right. As of tonight, we have the beautiful poop, which I haven't seen in months. It is nicely formed and very smelly, just the way we like it. I think I even smelled a "garlic loaf" in there tonight. We are all very happy about that. He just continues to feel great and is back to the Energizer bunny. It is bedtime and he doesn't act tired at all. He and Anna are running around tormenting Mark trying to get him to chase them all over the house.
We took a break from dilation tonight. Last night was not pleasant but seeing the huge improvement today is certainly the reward. I told Mark that I wish we had a med which would help him with anxiety over it and also get him to just relax. Mark said, that drug was called Sedation. Oh yeah. Well, we don't get that option. So we are giving ourselves and Samuel a break tonight. I have often wondered if 15 wasn't the magic number for Samuel anyway. Things always seem to be better when he is at least a 15. That is where we are now. There is a huge difference between that and a 11-12, that is for sure. So we breathe a sign of relief that once again, WE, the parents, have helped our child. Thankfully, Samuel has the spirit of God's forgiving nature. I just wonder how these memories are going to shape his future. Just add them to the rest of the mounting pile of crap I guess. At least he knows today, who took care of him. We praise God for giving Samuel an understanding of his circumstances which could not be explained any other way than supernaturally.
1/15/08
The surgeon in Tacoma still "refuses to touch Samuel." That is what I was told by RN Kelly today. By the way, my Onc is conveniently off work today. So I did not get the news from him and do not know if he talked to my GI again or if the surgeon did as well. Apparently the surgeon is still claiming he does not want to touch an anoplasty. As if we can go to Cincinnati or would even want to.....we know how well that worked out the first time.
RN Kelly was able to locate the 15, 16 and 17 for us today which is good news. Bless her, she actually "gets it." Since our choices are either to do this ourselves, or wait until Tuesday, we figure we can get Samuel back to his size 17 by Thursday which would be five days sooner. Some of his poop has changed over to either brown granola, paste or brown sand which at least looks a little fresher than the black sand and coffee grounds. Mark and I are NOT happy with the way this has been handled by both the Tacoma staff and also our GI. All of these MD's know he has many GI issues at the moment with a fragile immune system and it is apparently not a big deal to any of them. That is aggravating.
I suppose in the grand scheme of things, Mark and I doing this for Samuel helps to continue to free us from the medical system we hate. This is just one more thing we won't have to ask that they do, or wait on them to find time for, or just frustrate ourselves over, over and over again. We have already taken on full responsibility for curing Samuel of cancer, so taking on the anus which refuses to behave will just have to be added to our list. We hope that by our slowly dilating his anus back to the right size, we would minimize any new scar tissue from forming. Yet, I continue to stand in amazement that no one finds this a problem which needs addressing now considering how long it has been going on. I will just hope that as all of these unhelpful people grow old and constipation sets in, they will be reminded of Samuel as they strain on the throne. I can tell you that my mom calls me to sympathize with Samuel every time she has a bout with diarrhea or as Samuel calls it, "fire poop."
I have not filed a complaint with the hospital yet. I am waiting on my Onc to call me again so I can ask him just exactly what the surgeons there ARE able to do for Samuel. Are they going to be able to do a g-tube at some point, or do I have to do that myself too? The fact of the matter is that this reminds me all too much of the battle to get Samuel's surgery done over a year ago and appealing to people who pretended to care, but really didn't. Or being stabbed in the back by the very person who went out of their way to help. That really soured me for a long time, then I got over it, now I feel it all over again. Who is helping? Who is saying they are helping but really is part of the problem? Who is advocating for Samuel, who is not? Who is listening to our concerns? Who has true compassion for Samuel? Who does not? Or my favorite, who wants to help as long as it is during business hours but wants to be oblivious on evenings or weekends? Samuel NEVER gets a break. Samuel suffers because no one seems to have the time to devote to him when we need it. When we came back to Tacoma to continue our "cancer care" the Onc who took us on said he just "wanted to help." Now I wonder. Did he take us on thinking he was just going to help Samuel die without further damage from chemo? Did he take us on thinking a case this difficult would just somehow become simple? Did he take us on to improve Samuel's quality of life which was our main issue when we walked in the door there? Apparently I need to remind him of that. Quality of life meant that we actually expected him to have a life. Not die. We still expect him to have a life. We expect it to be a quality life. Does that mean we have to do everything ourselves to ensure that? Apparently so. I guess it is a good thing we are up to the talk. Anything that brings him health and healing and ultimately gets us away from the medical system which consistently does us wrong is fine with me.
I dream of the day that all of this is behind us. I had a conversation with God the other night. I asked Him why children continue to die from cancer when it appears that their parents have faith in Him to heal them. God corrected me in that their faith was in doctors and modern medicine to heal their children, not in God. They prayed to God, but put their faith in the wrong man. I continue to be reminded why I put my faith in God and not MD's or their medicine. Only God has the kind of time I need. May God give us the tools, advice and wisdom to continue to heal our son. My faith will always be in God first. Praise God for honoring our faith.
1/14/08
Today's Labs
WBC 8.1k
ANC 3880
HCT 30.1
HGB 10.4
PLT 178k
LDH 209
Labs continue to look better and better! We are pleased to see that HCT go up because it tells us we are definitely on the right track with Samuel's gut. But unfortunately, here it is Monday and we are still no father than we were two days ago.
After talking with my GI Saturday, I switched Samuel to clears and no food by mouth to see if we could break up the impacted poop inside him. The problem with impacted poop is that it stretches out the intestine it is stuck in which interrupts peristalsis which is exactly what we have been experiencing for the last few months. Samuel's gut has certainly had it's stops and starts but mainly stops in the last months. It is hard to get out of this pattern once it starts. We have done it before, but things were not this bad. Last night we chose to do "Slimey" vs dilation because I was making no progress with clears. Slimey = enema for those who don't know. Well, we got nothing back after Slimey. That is scary. Usually, he cannot wait to go poop. Instead, he got into the tub and sobbed for about an hour. This brings me to the worst part in all this. Mark and I are forced to feel inhumane as we do these things for our little boy to keep him alive and try to keep his body functioning at this point while he cries and begs us to stop. He asks why he cannot have this done at the hospital where he can "sleep" through it and we explain that they don't want to do this right now. I seriously wonder how any of these caregivers can sleep. I know this. I don't want to feel inhumane, I don't want have to distance myself to my own child's cries for help. It is above and beyond. He has been through too much. And yet, we will do what we need to do to save his life because no one else seems interested at this moment. And I am sure he will accept it as he as all the other things he has had to have done to him. We do plan to check his size once he is a 17 again from now on. However, checking size and dilation are two completely different things.
We are on the third day of clears and still I am getting black sand poop so there is a ton still in there. Another problem we are having now is that Samuel is getting bloated and tummy aches as things are backing up. I added activated charcoal and volcanic clay to this regimen to help grab impacted poop and any remaining drug residue. This seems to be helping a bit. I also now believe that the excess lung mucus is a byproduct of what is stuck in the gut. We have seen this happen before as well. Fix the problem, lung butter disappears almost overnight. It is still slowly improving and he is no longer having coughing fits.
I called my Onc first thing this morning to let him know how things were left with the GI over the weekend and how things are today. Waiting until next week is just unacceptable. The first thing that needs to be done to help Samuel's gut to rid itself of the impacted poop is to open the door, the anus. He is a 14 tonight. This is still not good enough to help much. I told him about everything the GI said about Samuel's different poops, the bacteria, and the fact that on day three of clears we are still getting black sand. I asked him if he found that alarming. He asked what the GI said........... like was it okay with her? And if it was okay with her, it was okay with him. Well, I said it was NOT okay with us. And I continue getting the impression that everyone wants to pass the buck here. I reminded him of the time I mentioned that the MTX stripped the lining of Samuel's gut much like high dose MTX used to and told him that it all makes sense now. It could not be eliminated from his GI tract so festered instead. Thankfully, I am not stupid enough to continue giving this drug for fear of NOT giving the drug. I told him I found it awfully strange that the surgeon who could not wait to rush Samuel to surgery and remove his colon was unwilling to help him now. This is a simple procedure and they are making out as if it is some major task. The Onc said he would call our GI again and see if she would speak with the surgeon and make him "feel better" about doing this. Can you believe it? I asked the Onc if he thought what Mark and I have to do for our child is acceptable and he agreed that it is above and beyond the call of parents at this point. I also told him that last year when we dealt with this issue BEFORE cancer, it was okay for him to take a back seat role, but now that cancer is involved, he is to get in the front and pay attention. He thinks this is out of his expertise? I have a two year degree in accounting, how far out of my expertise do you think this all is? I will tell you this. Someone will definitely account for this. If I have to continue acting as the MD here, I really need my own office and be paid more. I told the Onc that there is no excuse for him to not take charge of this situation, he is now acting primary care. And so it is now after 7pm and I have not heard a word from him and no plans have been made. He told me this morning he would have something planned in the next 48 hours. I reminded him that I have not worked this hard to get Samuel into remission AGAIN, to watch it slip away because of negligence. I am really sick of people who don't want to do their jobs. And I just wonder, how many kids die each year because of negligence? Because doctors would not listen, or parents did not know to question them or make them DO something that needed to be done. This is not about being nice, it is about saving Samuel's life. We have sacrificed SO MUCH to see our child live and thrive and watching him smiling, running, playing and thriving in spite of yet, all this, is worth everything.
My GI's office called to tell me tonight that they cannot get the dilators in the sizes we need for 5-7 days. They did order them, but this is obviously worthless to us for the time being. I will see if RN Kelly will call around the adult hospital tomorrow and find us some sooner since it appears that nothing will be done for us soon.
And by God's grace, Samuel just feels great. As I have told all who enter and see him today, after what he just lived through, with his body literally wasting away, anything would be an improvement. Other than the inconvenience of us taking care of his butt which thankfully is forgotten within 30 minutes, he is just making up for lost time. He wakes up early and plays non-stop. The days of saying he is too tired are over. We actually walk around him and ask, "Aren't you tired?" as he runs around like a madman. He takes a short hour nap in the afternoon and is ready for more. He is learning to read which is what he wanted to do this year. He and Anna just play wonderfully together and that just melts my heart thinking of how long she has waited for him to feel better so she can play with him. Waiting for him to feel better so he would like her again. Samuel and Daniel also are playing great together these days and I also love that. Samuel and Kaysha have always been close and she is the one teaching him to read on a daily basis. This family unity is what we live for. Just iron out al the kinks, get Samuel healed and things would be golden. We continue to look to God for complete restoration. Praise Him for labs which show no sign of cancer. Thank you for your continued prayers!
1/12/08
It has been a frustrating couple of days dealing with medical crap again. Boiling down to if you want something done right, or let's say, done at all, you have to do it yourself. I apparently stupidly assumed that getting Samuel's anus dilated in Tacoma would be an easy thing. After all, it is a simple task that most parents do for their babies. Well, guess what? Everyone balked. Their surgical team doesn't want to touch it making this now the second "easy" thing we have asked them to do, and they refused. My Onc called to give me this news yesterday claiming that none of the surgeons want to mess with another surgeon's work, meaning the anoplasty. . I told him, "You mean to tell me that my GI, a female MD has more balls then your male surgeons? This NEEDS to be done." He told me that this anal dilation terminology and necessity was just beyond his scope of knowledge. Well, he is going to be educated this upcoming week because this is total BS. I am also going to file a complaint over this, now the second thing they have refused to do causing us to have to go to Seattle which cost more money, more time, and more suffering for Samuel.
Yesterday, while waiting for them to figure this all out, I checked Samuel's anus and he was a very tight 12. And he was NOT impressed at all. I assumed I could get an 11 in, but had to start with 9. I am not even certain I actually got the 12 in. So upon finding this size out, I was pretty livid to find that no one is going to help. I told my Onc to schedule the sedation slot and Mark and I would do the dilation. He was actually fine with this as long as our GI was fine with this. Just one problem though, our dilators only go to 14 so we need 15,16 and 17. Not sure if anyone has them in Tacoma at this point since this is such a "foreign" thing. And where does our GI weigh in? Well, the Onc called her yesterday basically telling her that she HAD to deal with this and then called me to say she would call me later with some arrangements. She never called. I assumed I would not hear from her until she had a plan. She did call this afternoon, however, to say that she could find NO ONE in Seattle to do this either. Apparently none of the other GI's there do it and/or wanted to. The only ones who do it are the surgeons and she knows how fired they are. So the best she can offer us is getting him on January 22nd.
Now, Mark and I have already decided that we will do this ourselves. At this point, this is too important and too ridiculously out of hand. And I am very pissed off that we have to do this for Samuel, to Samuel, because no one else finds it important enough to do it immediately. With Samuel awake, we can only dilate up until it becomes tight and then stop. So it may well take a few days or longer to get back to a 17 assuming someone can come up with the rest of the dilators we are missing. Our GI was going to look this weekend and call me Monday. I am not putting any more faith into promised phone calls at this point. We will do the best we can. She added us to the 22nd but if Samuel is back to a 17 by then, we will cancel it. I cannot believe that I can tell people that he is sitting on the toilet straining until he is beet red saying he cannot get the poop out, and they do nothing. It is amazingly frustrating to say the least. Especially knowing that this has been going on for months.
I did ask my GI for explanations of all the different poop consistencies we have seen. So here you go. Granulated coffee ground poop which is not bloody is actually poop which has been in the system too long. Sand and smokey poop, same thing. And when I mentioned that he has had three different blood bacteria which were gut related, she said that meant that his intestines were inflamed and would also mean he would not absorb nutrients as well. DUH!!!!!!!!! He is still 37 pounds, this is obvious. And of course this explains why steroids and nettles have improved this so much in the last few days, because there is tons of inflammation. Because this has been going on since September which is when the granulated poop started. Probably could have saved myself and Samuel months of misery, starvation and suffering and also seen remission a lot sooner had we looked to his butt. So once again, this issue almost cost him his life. What pisses me off most is the amount of time he suffered here, his body starving and writhing in pain, and still NO ONE takes this seriously. I am going to file a complaint and have an in person talk with my One about what being the primary care entails for Samuel. Unfortunately, he prefaced all his conversations with the staff in Tacoma with ,"Well, you know, this is Samuel Backus....." meaning things are not predictable. So he probably killed the idea of anyone helping with that. He asked three MD's about doing it and none of them wanted to. I suppose I should be happy he did agree to sedate Samuel so we could do it, but at this point, Mark and I will just try to do this slowly over the next several days. Did I say I am NOT impressed? Things have been bad previously with his anus closing down, but he never lost weight over it and never was unable to gain because of it. He also never had bacterial overgrowth or horrendous muscular pain because of it. Left up to the "medical system" he would have died in December and it would have been recorded as a "cancer" death. Easily. It wasn't the cancer which almost killed him, it was what the cancer treatment did to his gut way back in 2004. My Onc told me over and over, "Well, that is just the cancer taking over." And I thought, "No that is something wrong in the diet." Samuel's gut has been much harder to deal with than the cancer was. So I will tell you again, no one will put more thought into your child's health than you will. Keeping Samuel's gut functioning optimally is the key to his durable remission. That seems obvious. Apparently, obvious only to me. That is going to change.
The only redemption here is that Samuel is feeling great. Today has been another huge burst for him as far as energy goes. He was so excited to be able to go to the market today that he got up at 5am. He and Anna have been playing great together and that is just music to my ears. He has been running around here happy as ever and with more energy than we have seen yet. I think the small dilation he got yesterday has already helped. He actually made a poop which looked and smelled like poop in the middle of the night. This morning, however, he could not get all the poop out. My hope, though is that we are seeing the beginnings of his body absorbing more nutrients. And better yet, he looks pinker, might be making some reds which means he is getting enough nutrients to start the process. I haven't seen any poop that did not look "fresh" today. He certainly acts relieved of something. Praise God for that.
1/10/08
Today's Labs
WBC 5.7k
ANC 3420
HCT 28.9
HGB 10.2
PLT 177k
LDH 216
Awesome labs! Now three weeks with no blasts! Praise God! Steroids are helping that ANC along I expect but he is not even at full dosing on them yet. The HCT is not shocking still going down, glad we did not lose more ground there. We just do not expect to see it go up until we get his anus opened up and the GI tract righted. And of course, we are thrilled to see the LDH go down. All chems look great. That phosphate is still low, right where we like it.
You would think with these great counts Samuel's lungs would be improving in leaps and bounds. They are slowly sounding better. We just cannot wait for these to clear out. His butt is looking better though. The fire poop has been gone over a day now and that always helps. I did not hear from the GI clinic at all today. Very annoying that they cannot figure out where their GI is working next week. I e-mailed our Onc about getting on with the surgeons to do the dilation there next week. Haven't heard back as of yet. I am hoping they can get us something for Monday so we can get Samuel's gut back on track and see some red cell recovery. Yesterday his gut was functioning better than it has been today. The vicious cycle continues.
Samuel continues to feel great. Happy, running around , playing with all his siblings, and he is eating with his mouth better too. His lips and tongue looked a bit redder today which is a good sign of his spleen recovery. Previously, his tongue and lips have been rather pale so it is good to see some color coming back there. My hope is that by the time we get his anus opened up, his GI tract will recovery quickly and get us on the right track to divine health.
For today, we are thankful to keep seeing results going in the right direction. Praise God for continued healing.
1/9/08
Well, we have nothing planned for Samuel. My GI's office did call today to say they had a regular appt time for us Friday at 9:30am which is now unhelpful since the reason we were going was to try to sort out what was going on, and we now know. The RN thought our GI was in Seattle this coming Tuesday, which would be okay, but never called me back to confirm. Very annoying considering this office has previously been outstanding and they have now left me hanging on three occasions. If our GI was going to be in Seattle Tuesday, then we would just wait. But no one can bother to LMK. My Onc was out of the office today so probably the best we will be able to do at this point is get a Monday slot. Hopefully by then Samuel's cold will be better. What is most frustrating is that we, Mark and I, are seemingly the only ones who understand the urgency of the problem in the grand scheme of the cancer status. As I told the RN, I do not want Samuel to lose his remission status as it is now, because of this. So, I will be calling the Onc first thing in the morning to see if he can get the ball rolling in Tacoma.
Samuel continues to have great days in spite of it all. His breathing was quieter last night and he seemed a little better through the day. The gunk is still there lingering and as soon as he lays down, he just starts in coughing and gagging. He now has a spit bowl in bed with him so he can spit instead of cough it up, swallow it, gag, and repeat. I will be really glad to see this go away. His would looks great. Just a narrow line across where the new scar will be. It doesn't bother him at all. His butt is looking better since he has not had fire poop today. In fact, I think the nettles actually have really helped his gut more than anything. The diarrhea has stopped. The granulated poop, sand poop and smoke poop have stopped. He did make some formed turds today which Kaysha said looked first like granola and by tonight look like real poop. No smell though. The best news of all is that he is 37.4 pounds tonight which is a huge improvement over 35.4 just a few days back. So he is gaining again which means he is absorbing better. On his current diet, he should weigh 42 pounds. Anything he eats with his mouth just adds to the overall weight from there. So, he is still losing a lot of calories and his color looks no better. But, there is improvement. We hope that the nettles will continue to keep his gut calm and as the swelling goes down, the absorption will improve. We will know that by the scale and quality of the poop. So things could be a lot worse in the grand scheme of things. I know my Onc will be able to get things going here simply because I will remind him that Samuel cannot take his little chemos with his gut like this and nothing motivates an Onc like missed chemo. We thank you for your prayers over this butt situation.
We will see labs tomorrow. If the LDH was up because of Samuel's gut, it should be back down because things have improved a lot in 24 hours. We continue to pray for Samuel's lungs to clear and for his gut to heal and work properly. Our hope is that one dilation will get this back on the right track and his poop will do that job for the rest of his life. And things WILL improve as he gets bigger because the small amount of rectum he has will grow more and part of his small intestine will start to function more and more like a colon.
1/8/08
The plot thickens.....
After dealing with diarrhea and I mean watery fire poop, then perfect poop, then as Kaysha calls it, sandy poop, then smokey poop the thought occurred to me that there is NO rhyme or reason for this at all and the only other time we have dealt with this type of "crap" was either a blockage in the gut or when Samuel's anus closed down. Is anyone else groaning? We are. I called Mark at work to tell him what I suspected. He just loves getting these types of calls because he knows when I suspect something bad like this, it usually is correct.
So I take a peek at his anus. I don't routinely look at it. He puts his own cream on these days and I just take a quick peak at what the damage is. Since his anoplasty, the inside of his anus and the ring around it usually looks pretty good now that it is indeed a mucus membrane again. It is usually the skin just to the outside of that that breaks down. So today I ask Samuel if I can look at his butthole. He immediately lays down and drops undies. I guess it is good that he has no thought of modesty. It also seems funny given that he was so angry at anyone who wanted to look at his wound on his tummy yet he will let anyone look at his butt.
I had Kaysha look with me. We saw nothing. I got out a flashlight and the magnifying glass I carry at all times in my pocket. I saw nothing. No hole. I see wrinkles, no hole. And the skin is really badly broken down. When this was proper size, the hole was visible. There is nothing visible. This is NOT good news except that it would explain ALL of the problems he has been having at late. It also explains why when his poop is slightly formed, he says it hurts his butt. And it also explains why this skin is SO broken down. Pooping is like squeezing toothpaste out of a pin hole. It also explains the anemia. We have actually seen this before, anemia when the gut was not functioning properly. Now I suspect this has been going on for quite some time since it has so adversely affected his gut to the point where he is improperly digesting foods, seeming to have times of gut failure and no rhyme or reason to the quality of the poop. He needs to be dilated. A "normal" person dilates their anus every time they "go" from the inside out. But since Samuel's poop over the last few months has not been formed, there has been nothing to dilate the hole and keep it open. Poop backs up, then you poop around poop that has backed up causing what we refer to as water and chunks. This has escalated to the point that he will never be able to poop a log big enough to open the hole without intervention.
So I call Mark back to let him know and again, we are both unimpressed with the whole thing. Then I call the GI's office who still has no opening for us. The RN was going to call our Gi to see what she could do and I have yet to hear back. So they probably won't be able to help us quickly. And by the same token, we won't need a regular GI appt. because we know what the problem is now. I called our Onc and gave him the news and he was just as unimpressed as we were. But the conversation I had with him was more about Samuel's lungs and sedation. This problem needs to be dealt with immediately and he absolutely needs sedation. Most likely we will have to have one of the surgeons in Tacoma do this for us because our GI was in Seattle today and last I heard she is there every other week. Now that we know what the problem is, we do not want to wait two weeks either. Our Onc said that some of their sedations MD's will sedate regardless of the lung condition if a procedure HAS to be done. He also recommended benedryl for Samuel's lungs because if they are inflamed and secreting mucus, they should respond and he should be able to breathe easier. So of course, I got out the nettles and gave him a big dose and he improved. And if there is any inflammation in the gut, it should help there too. It pays to talk to the Onc occasionally. He also recommended abx and said a sputum culture would take too much bacteria from his mouth to be reliable. So I have abx here and we will probably do them for three days to see if there is any improvement. Yes, i know I said we wouldn't, but the tables have turned, once again. If things are not better by Thursday, then we will go in and have a chest x-ray done. I will probably ask for an abdominal x-ray at the same time. And hopefully we can get the dilation done in the next 7 days. Friday would be great if things in his lungs are better. We can get his NG changed out then as well. Usually, once his anus is opened up, his body is able to right itself digestion wise within a few days. We will see how this goes given the duration that we have again had this problem undetected. Mark looked at Samuel's anus tonight and while he did fine the hole, he agrees that it is quite small. Probably a size 10-12. Samuel is supposed to be a 17.
I talked to the Onc about Samuel's LDH creeping up again. He said the 259 was of no consequence especially given what is going on in Samuel's body at the moment. However, if it continues to go up over the next week, well then, he will find that troublesome. And it all hinges on Samuel's gut working properly, getting all his foods, supplements, etc. That makes getting his anus open even more urgent. I hope to get some things scheduled tomorrow so we have a better plan of getting Samuel pooping right again. My poor poor little man. If it is not one thing, it is another. It is like we keep trading problems. The butt closing problem was MUCH easier to deal with than the cancer if that adds any perspective. It still sucks nonetheless.
We continue to thank God for his wisdom and showing us where to look. Since we considered Samuel's anus healed with the closing down stopped in August, it was literally the last place we would look. I guess the never assume anything lesson works well here.
1/7/08
Today's Labs
WBC 3.8k
ANC 1064
Monos 4%
HCT 29.3
HGB 10.4
PLT 120k
LDH 259
Things continue to look hopeful. RN Kelly was impressed with Samuel's PLT. So are we. His ANC continues to go up and I am not shocked at all to see it over 1000 since he had a rough night coughing more than ever. I figured it must have gone up. His HCT being down is not shocking to us since neither of us thought the 34.4 from last week was right. Obviously we want to see this go up. It did not go up in August past two days worth. I think this still may be a dietary issue though and we are still trying to work out the kinks there. I put a call in to my GI's office and apparently she is slammed so we are on the cancellation list at this point. With Samuel now having an ANC it feels a bit safer to go to her office and at this point, we need to figure out what is going on with Samuel's gut. It works great, then doesn't, no rhyme or reason and it is frustrating because I think I find the culprit and eliminate it and then something else pops up. Samuel doesn't seem to be stopped by it at all and his chems still look great. On paper, he looks great, IRL, he is doing great. It is just his poop which sucks and of course he is still not gaining weight. By the same token, he has at least stopped losing it for the time being. Lastly, that LDH creeping up is NOT making me happy and while there are a pluther of things that could be doing it including cancer cell death, it started creeping up in September well before we saw peripheral blasts. So we are keeping an eye on that for sure.
So, Samuel started his steroid pulse today mainly because of the LDH going up. i know steroids for sure get to the marrow and stop the blasts. Keeping this balancing act going, we do NOT want to lose the ground we have gained. We are so thankful to be where we are today but don't think for a moment that I am walking forward without looking behind us. The steroids ought to boost his ANC even higher at this point. His lungs are still congested but the RN here today said it was a "loose congestion." That is better than impacted. He is coughing it up and spitting it out but just keeps making more. They can do a culture on Samuel's sputum and see if it is anything they can treat. But if it was something, then they would just offer abx and we all know our answer to that. So, hopefully the ANC burst will help in the grand scheme of things. I am also hoping it helps his gut and if it does, then we will know that something is swollen in there. We will see labs again Thursday.
The weekend was fantastic! One of the best in months. We got a lot accomplished and there seemed to be time for everything we needed to do. The rooms which needed a make over are done for the most part. Our entry room is now back to the "adult" room. Formerly romper room. And it makes me so happy because it should always be clean. No toys allowed. The kids got their own new romper room dedicated to their toys, books, games, a play doh table, and their messes which don't absolutely have to be cleaned up daily anymore. They are thrilled. So are we because this has made life SO MUCH easier on everyone. Kaysha and Anna moved back in together last weekend so we converted Anna's old room into a small entertainment room upstairs and hope to make it a library room as well. Now it should always be clean as well. Kaysha and Anna have managed to keep their room clean now for over a week. That is a huge accomplishment. So we tackled many tasks, got a lot of spring cleaning done, and are now enjoying the fruit of our labor.. Mark and I actually watched a DVD movie this weekend together. That never happens. It was great. The food was great, the coffee was great, the days were grand. Now the major messes are in our room and Samuel's room and in comparison to what we have just gotten done, these are nothing. It feels good to get these things back in order. At least this part of our lives we can control and having a house in order helps me to be much more productive in other areas.
I took a lot of time to just enjoy the moments this past weekend because life was just so easy and calm. Monday and Thursday are not days I enjoy anymore. Life and death are not held on a piece of paper and yet it is that phone call we wait for which tells us which direction we will go in. These days remain stressful. Especially in light of where Samuel is right now medically, lessons we have learned in the past six months, and trying to cautiously plan a future. It feels like we are at the top of the mountain but it is all ice and we are just trying not to slide off. We continue to praise and thank God for his guidance and wisdom. We continue to look to Him for everything we need to walk on including reassurance that this is not too good to be true. We continue to believe Samuel is healed and restored to health because divine health is God's plan. But oh, how nice it will be to get a few months of remission under our belts. For now, we will keep enjoying the moments where life is easy and calm. Samuel continues to do great, just needs to get the junk out of his lungs. We pray that happens soon. he has had a cold since November. Can you imagine?
1/3/08
Today's Labs, early signs of clinical remission
WBC 2.8k
ANC 750
HCT 34.4
PLT 76k
LDH 227
Everything is up but the total WBC. Not a major difference from Monday however. Wow, we DO NOT have to go get PLT. Praise God! RN Kelly was just as happy as I was about that. And Samuel is making reds again too. Oh, how lovely. Mark and I are just praying that WBC goes up. Samuel's cold is so annoying. We can hear him breathing at night down the hall with his door shut, he is that loud. I had them check his oxygen sats Sunday to be sure it wasn't interfering with that, but they were solid 100%. Course, he wasn't sleeping. But just sitting you can still hear the rumbles. We just want him well. I want to hear his voice again, without cold stuffiness. His wound continues to slowly heal but his butt was back to bleeding last night. I knew he must have had PLT then because it stopped pretty quickly. Still, it is not something you want to see ever, but especially when you suspect low PLT. I just realized that it has been almost two weeks since we have seen blasts on paper. Back in August, we made it 28 days before the blasts returned. At first they seemed like a fluke because they appeared and went away, but a week later he had 50% and the game of cat and mouse was off again. So, this is day 13 with no blasts and you can bet we will be a little superstitious this time around. All I know is that everything felt so great back at the end of August as far as the cancer status went and then everything fell apart. Whether it was the cellulitis, the GI issues from the abx for the cellulitis causing improper absorption of his diet and supplements, we will never know. What I do know is that I never want to do what we have just done again. Ever. We want no more backsliding. It was far too hard to get a firm grip this last time. We are still reeling from the experience. So while today is a day to celebrate and a day for praise, we are cautiously optimistic that this will be the remission that will be durable.
That said, Samuel is still off his little chemos not that I think they are 100% responsible for where we are. As our Onc says, 6MP and MTX are NOT induction chemos. They were in the 60's however and children did go into remission on them, it just did not last long. They were used with steroids and Vincristine at that time. Cesium is still our big gun here, that, diet and the addition of Artemisinin are things we rely on every day. As far as I can see on paper, steroids are the only things that are affecting Samuel's WBC in a major way. The other two seem to be taking their toll on his gut more than anything at the moment. Our Onc in Seattle would tell you that one's cancer is as sensitive as the body is to the drugs. We know that to be true. So they may likely be helping, I just am not impressed with what is going on in Samuel's gut. And as it heals and becomes more "normal" they can probably be added back because they are tiny doses. For the moment, we keep doing two steps forward one back with his GI tract. One day it is great, the next horrid. The past two nights he has had diarrhea again. He is currently losing weight again, though he seemingly feels GREAT in spite. I know where some of his calories are going. He is running them off. Literally. He has been running, playing, chasing and can now even jump and it no longer hurts his bones. So awesome! Yet, he has had a muscle issue just last night and a digestive headache the day before. So something is still wacky. Since everything ties into his gut, this is concerning to me but by the same token, I haven't seen him feel this great in months. Our hope is that as his WBC goes up, whatever area needing healing to work properly will get healed and this will right itself again. Samuel is due to start steroids again and I am holding them for the time being waiting to have my Onc weigh in. Steroids will drop his overall WBC but increase the ANC. I am not sure how this will affect his cold but do know it will adversely affect his gut at this point. Steroids are used to stop immune reactions in the GI tract but with Samuel's low WBC already, this is not likely the culprit. Yet, we know his marrow could still be packed with cancer and so this is a balancing act. Our Onc thought doing the bone marrow after this round of steroids was a good time, however, with this cold, no one would sedate Samuel. Giving steroids will prolong the cold. It may linger a long time yet anyway. I am still wanting the ANC PLT theory to hold true. Five days after PLT recovery, you get ANC recovery. Meaning ANC over 1500. We will see about that. We also want his NG changed out under sedation if possible to be certain it is not harboring mucus keeping the cold going as well. But this is all on hold for the time being. That is fine, I am not in any big rush for a bone marrow, but we would like to change out the NG sooner than later. We will see labs again Monday.
After a three month break, we have again started school. The big kids test in four months so we have some major work to do since we basically took the summer off, and then schooled about 2-3 weeks in September and abandoned everything. Samuel and Anna have been sitting up with the big kids working on writing. Samuel is writing right handed. I note this since he uses a mouse left handed, and colors both handed. He writes his name just beautifully. His writing is better than Daniel's. Getting back into school has been nice for me as it seems to align my day and I get more accomplished. Daniel actually sat down and read a book today, I should have taken a picture. Getting him to read a book on his own has been like pulling teeth. He is possibly the most difficult to motivate to learn. Kaysha does pretty well and Samuel is a natural. Anna is just too young to tell and really anything that Samuel or Anna do this year is just gravy.
We are slowly getting a grip on this house and what we need to do to manage all the rooms. Once again, we have more stuff than room. More people than rooms, etc. But since I just want to take some R&R time, things are going to happen in baby steps. Mark needs to take a month off just to get our lives back into some sense of order but that will never happen. I am certain his employer will just be happy that his attendance will improve as Samuel is not needing transfusions now. We have had some great family time over the past several days now that things are not as critical with Samuel. It is glorious to see the kids play together. Probably one of the best things to come out of this past crisis is the relationship that Daniel and Samuel now have. They pretty much ignored each other or fought prior to the relapse. We look forward to a quiet NON medical weekend. Samuel gets to be port free for the next three days! My Mom is coming for "Christmas" and hopefully we can implement some of these house plans. Or maybe we will just do nothing and enjoy NOT needing blood or PLT. That is worthy of some mighty praise! I just have to think blood and PLT last longer when you make them yourself rather than borrowing them all the time.
We praise God for his continued wisdom. Our prayers continue for GI healing, weight gain, WBC improvement and Samuel's cold to go away. We know God can correct all this in a second. Any second. Praise God for Samuel's restoration. He is thriving in spite of everything!
12/31/07
Today's Labs
WBC 3k
ANC 739
HCT 32 transfused yesterday
PLT 55k
LDH 207
Samuel continues to do great. His ANC is climbing nicely and thus, his cold is manifesting in more annoying ways. It bothers Mark and I more than him though. We went for blood again yesterday and HOPE and PRAY that it is the last time. His PLT are holding nicely but oh we just want to see them go up. Any day now! Looks like he will be good to make it to Friday but of course, we just want him to MAKE HIS OWN. We will see labs again on Thursday. His WBC and ANC are not artificially stimulated currently as he has been off steroids and is also off all chemo for the time being. The MTX definitely stripped his intestines and all the weight he gained, he has lost again. It is incredibly annoying. And yet, his chems look awesome so it seems to me that he is absorbing things but perhaps just not getting enough calories. His tummy still takes turns being too slow, and then suddenly starving. His energy is great and so is his attitude. He is happy, enjoying his Christmas presents, playing with the other kids and thankful to NOT hurt. He thanks me every day still for helping him get better. I remind him to thank Jesus too. In the grand scheme of things, it is amazing how much he understands.
We have spent the weekend trying to make sense of this disaster area we call home, sense of our lives, and just resting from the war we have survived. While Samuel is doing SO MUCH better, he is still high maintenance diet wise and we adjust things daily based on how he is doing. He is currently pooping TOO much again though it is formed well so not diarrhea. His butt looks better but he still complains of a "fire poop" here and there which is extremely annoying. His wound is open to the air now and has scabbed over. Won't it be nice to see this gone?
I don't have much to share with you about this year that you don't already know. It pretty much sucked. The best three months of the last 3+ years were lived this year and the rest of it was a nightmare with few highlights. I hardly remember the good months. We hope and pray that 2008 will be great. We deserve to have a life at some point. It is bound to happen. We want to thank everyone who has prayed us through this horrid year and everyone who has supported us financially, and sent lovely gifts to our family this season. We literally could not have gotten here without each and every kind gesture and every single prayer offered up. Praise God for his continued wisdom and guidance. Praise God for Samuel's healing and restoration. May the Lord bless you all in this New Year. Much love.
