7/7/07
I did not update yesterday because we literally came home and went to bed as quick as we could do so. You simply cannot imagine the stress level this kind of life carries unless you have lived it. I don't know anyone personally who has had our experience so I doubt that any comparisons can be made. I don't update when I am tired because I tend to be more negative. So, we all got a wonderful night's rest and feel much better today. Samuel is once again the Energizer Bunny running circles around everyone. He might look slightly more pink today but it is hard to tell.
He got more precious platelets yesterday afternoon and we met with our Onc who arrived at work yesterday pleased to see Samuel on his schedule until Mary dropped the bomb. So, Mary, the Onc and the palliative care MD came to infusion and spoke with us while Samuel was getting platelets. No labs were drawn which was fine with me because it is almost easier to not know for the time being. Samuel will be able to get blood next week if his HCT does not start to climb. The Onc feels like he is making some red cells, enough to hold, but possibly won't make enough to build this back up until the blasts are a lot lower. So the red blood will help his overall mood a lot. We all feel like platelets hold five days so hopefully Tuesday, we can get in for both. The Onc also does not think he will make platelets until the blasts are either very minute or gone. And even after that, after a blast crisis, the marrow goes through a shock period where it just doesn't make anything. We remember this well. Samuel's marrow was stimulated with GCSF back in 2004 because he had no cells being made for so long and too many infections. I handed them the sheet of all Samuel's supplements, or should I say three pages worth, and they are going to enter this verbatim into the computer so it is accessible for anyone who may treat him in the future. I am sure that everyone is skeptical about alternatives at this point, but they could not argue with his labs which show something is going on. So we wait. Monday should tell us quite a bit more about how this is progressing. Samuel has been peeing some toxic pee over the last few days, pee that burns his butt if he has an accident in his bed. So I am certain he is dumping cells like crazy again. Monday also marks a week that we have been on the alternative protocol. From my research, the two week mark can be very telling but I have been warned that we could be dealing with blood issues for a few months before things straighten out. It is my hope that Samuel, being a child, and very sensitive, will respond faster. We are pretty resigned to the fact that he will be platelet dependent for awhile yet. And I also found some studies which show that ANC does not recover until 4 days after platelet recovery. Of course this is based on chemo destroying the marrow first so I am not sure how that will bear on Samuel's body. Going on looks alone, he is doing great. Even the doctors had to agree, this is not slowing him down much at all. So we praise God for that.
We filled out an info sheet which will also be entered into the computer for all to see about our wishes and Samuel's needs. Things such as NO antibiotics unless it is life and death and then it is at our discretion. No chemo is to be offered or administered, ever. Helpful things like Mom knows this kid better than any doctor. I know him better than myself. Only God knows him better. Other helpful info such as Mom is legally blind, not crazy. It is just a subject which does not come up so if it is one of the first things they read, this might make a difference. And they still want us to fill out the DNR form. "Because he has active leukemia and you never know what it is going to do." This document is not legally binding for children under 18 but they still want it on record because it is most helpful to the staff. I have it sitting here on my desk to my left and it annoys me. Yes, if his heart stops beating and he is not breathing, DNR. He has suffered enough. I doubt that his death will be that easy. If God decides to mercifully take him suddenly, we will not attempt to stop it. No antibiotics is on that form. That is a no brainer. How much care should he get? Minimal, some, or full treatment? Should we feed him? Should we hydrate him? Isn't this all dependent on the state of his leukemia? I am still of the opinion that this is all crap. Perhaps it is a coping mechanism. Perhaps it is faith in God that I won't have to make these choices. I will go with the latter. And topping that off, I was handed a form called "My Wishes" which is for Samuel to fill out, as if, about how he wants to be treated when he gets sick enough to not be able to speak for himself. And how he wants to be remembered if he dies. This one flat out pisses me off. This is a child who has had two glorious infant toddler years which he will NEVER remember. Then three years of hell on earth which he remembers a lot of. Then a couple good months and now this. Which part of this should we remember? "Please forgive me for anything I said or did when I was sick that hurt you." He has been grumpy for years because all he has done is suffer and hurt. He takes the brunt of it out on his brother and sisters. Are they going to remember him always being mean? Will they remember the few times when he was feeling good and a nice boy? "When I am gone, please take care of my things listed below." "When I feel bad, these things listed below make me feel better." "When I hurt I do not like............" Here is the most awful part. Samuel should have died in 2004. IN fact, for the three comatose months, he seemed dead. His body was there, but he wasn't. We have already gone through this. I know exactly what he wants when he hurts.......me. No one else. He hated everyone. And there was not enough pain relief in the hospital to touch his pain. All those things he went through because of chemo could happen again if leukemia takes over and we will have to live that nightmare again. I am UNWILLING to allow this to happen again. My family cannot stand by and go through this again. I do not for one minute believe God will allow this. So, these two papers will remain on my desk for the time being until I clearly see that I am wrong about God's plan and God's Word. God holds us, God keeps us, God has led me straight through the most rocky steep terrain and at times I felt like I would drown in sorrow and He picked me up and put me back on my feet. As usual, we are the only ones who have faith in our son's will to survive. We are the only ones who believe God has kept him going this long, He will continue to keep him going now. Because of my disability, I have spent my whole life on the side of things where people say "you can't." So, I am used to the sorry glances, shrugging shoulders and sympathy sent. I don't care. I have never been a quitter and when someone tells me I cannot, I prove them wrong. That is my intent. With God on my side, failure is NOT an option. That is where I stand today. NO weapon formed against us shall prosper. Don't get me wrong, our medical team is backing us and supporting our choice 100% because they have nothing to offer us. That was said point blank. NO surprise. We already know that. They were nothing less than superb to us and I can guarantee you that the palliative care MD will have the butt of anyone who goes against our wishes. Like me, she has a very strong loud and unyielding personality so we are covered on all sides. But at the same time, they have seen too many negative outcomes to hold out much hope at the moment.
Mary asked how much this is all costing us since insurances does not cover alternative treatments. So far we have dropped $1500 on supplements which will get us one to two months down the road before needing to be replaced. Samuel will need to remain on this treatment for 6-12 months and then transition to a strong stage 3 treatment for another year. Then remission treatment. So we are into this for the long haul. Mary told me to post on this site that if anyone know of someone with income they need to dispose of for tax purposes, to have them consider donating to Samuel's Medical fund. I will post account info soon and you will be able to get a receipt to use as a charitable donation for tax purposes. So there, Mary, you will be proud of me. I put this out there.
We thank everyone for their prayers, love, notes and financial support. We could not go through this without knowing you are all standing with us for Samuel's life.
7/5/07
See labs update below for today's counts.
We meet with our regular Onc tomorrow. Today marks two weeks since we have known about the relapse. To be quite honest with you, when we found out, and then went in for blood products on Friday morning early only to find out his WBC was then 52k, we honestly did not feel like he had two weeks to live. It seriously felt like we were planning his funeral on that day. As Mark said, "I cannot believe we will have to let him go." And I said, "After all we have been through, got him through, everything was finally getting good, and now this?" We both decided at that point, that we were NOT giving up. And we will not give up as long as Samuel has quality of life.
One of the best "side effects" of the treatment he is getting currently is that he actually feels better immediately when he gets his medicine massaged into his skin. He is smiling, happy, playful, doing what he normally does each day. The only difference is that I am worried about his platelets which absolutely sucks. We have seriously never had to worry about platelets because the only time he needed them was early in 2004 when he received the devastating chemo. After he recovered from that assault, he never needed platelets. So, we really need your prayers for platelets to come back....soon. And I think that means that blasts need to go down a LOT farther for this to happen. If his HCT doesn't pick up by next week, I am going to see if he can get more blood transfused so that he has more oxygen in his blood and more energy/color. If the red blood is simply holding but not producing, I would rather see it in the 34+ range. 26, while adequate, is not going to be that way for long.
Two days ago, Samuel fell off Daniel's loft bed. All the way from the top to the floor. He missed the steps. It was awful! I was glad he had just gotten platelets but you can imagine that he has several new bruises. Thankfully, he was okay, but very sore. It knocked the wind out of him and he told me later, "I could not even call you when I fell." It reminded me of 2004 when he could not even call me at all. So, that trauma over it is no big surprise that he will need platelets tomorrow. Tank him up for the weekend so that we may think about something else for awhile.
Yesterday, Samuel had a great day. He was even more himself. His body seemed to heal overnight, both his butt and GI tract overall are just about perfect again. He has a few minor cuts on his face which healed up nicely too. He ran around like a crazy man all day yesterday, did not take a nap, and missed the fireworks at night because he went to bed early. He wonders today, when we are going to do the fireworks. We took some fireworks to Mark's work so he could do some for the kids. It was the first time I saw the inside of the place and met the kids. They enjoyed it a lot. We both remember being stuck at Children's and watching all the kids dragging their IV poles up to the fifth floor hoping to see something. So we wanted to give the kids Mark works around something special. Samuel had fun playing with the toys there and did not care about the fireworks at all. Last night was especially fun because the entire neighborhood must have spent a fortune on mortars and lit up the sky for several hours. It was a really nice break from reality. Kaysha and Daniel lit all of theirs off and I think this is the first year they stayed up with us to enjoy the sights. We all had fun. I missed Samuel who was sleeping though.
So, we will see labs tomorrow again. We both really dread the anxiety of waiting. I am working minute by minute on not allowing myself to worry. As you can imagine, it is difficult waiting for a piece of paper which tells the degree of life in your child's body. It occurred to me today that life and death are in the palm of God's hand. God's Word should always be my final authority on Samuel's body. And it says he is healed. Our anthem, NO WEAPON formed against us shall prosper. I believe that God holds us near and He has a plan. I rest in that. God uses every bad thing for good and I know He did not get us this far to NOT bring Glory to our situation now. So we wait, we work, we pray, we believe, we speak only life into our situation and we speak life into Samuel's body. We refuse to believe anything that does not line up with God's Word. Jesus has not died in vain for Samuel. God is my father. God is also Samuel's father. Samuel's heart beats because of God. Samuel remains infection free because of God. Samuel remains on this earth because of God. Cancer, bow down. YOU are not bigger than God. God has the final say. May we continue to find wisdom and direction in helping Samuel live out God's plan. Rejoice with us today, for this has been a day of good news, good spirits and glory. We want to send love and thanks to everyone who holds Samuel and our family in their hearts and prayers. Keep praying for Samuel's marrow to wake up and kick out that leukemia for good. Much love.
7/5/07 LABS UPDATE
Continued praises!
WBC 15.6k down from 30.5k
65% blasts
PLT 30k will get more tomorrow
HCT 26.5 hanging in there
ANC 156
Lymphocytes 24 normal
Monos 10 - UP FROM 0 which is great.
Things have changed again and moving in the right direction. Having Monos means that Samuel has cells which look for and eat up microbes and dead cells. They are the clean up committee and can migrate into all tissues to eat dead cells and kill microbes. This is extremely good news. Extremely. Also the WBC being down by 50% even though the blast percentages haven't changed much is also VERY good news. At 30K, about 21K of those cells were blasts. Now, at 15k about 9k of those cells are blasts so that is down over 50%. Praise God! And the ANC is 156, not great, but better than 0. His LDH, measure of tumor load is 398 so it is also down (251 is the high side of normal). Liver functions remain slightly elevated but okay and bladder/kidney electrolytes are all in VERY good shape. Praise GOD! Samuel continues to fight for his life. To God give ALL the Glory! More later.
7/3/07
Happy Anniversary to Mark and me! Hopefully tonight will be more fun than last.
We waited almost all day for labs to come back to due some "glitch."
WBC 10.7k
HCT 26.6
PLT 14k
ANC 0
Blasts 57%
So, the white count is down but blast count remains the same. He needed platelets and was losing red blood because of the platelets being so low. They thought we could wait til this morning to come in but after thinking about how much on average he must have lost in the past two days, we opted to come to the ER and get them there. I wanted to sleep without worrying.
Samuel's new supplements arrived and we started them yesterday afternoon. I was told with the low dose of cesium he was getting transdermally, I could just rub it in to his skin. Well, as I was rubbing it in, I got a huge rush of oxygen and energy. AND, I did not like it at all. He perked up a lot and was pretty happy though. So, it was obvious that this stuff does SOMETHING.
So we get to the ER and they wanted to draw labs again to check red blood just in case it was even lower and he needed a transfusion of that. Well, labs came back and looked like this.
WBC 30k
HCT 27.5
PLT 13k
ANC 0
Blasts 72%
His WBC tripled in a matter of hours. Neither of us were overly impressed. However, the red blood cells went up almost a point and the platelets were not dropped massively as I feared. With a dramatic climb of white cells and supposed increase in tumor cells, this should have killed off some of the other cells more but instead they are barely changed or raising. So, that boggled a few minds. Mark and I spent some time pondering this increase and I talked with the support person for the protocol this morning who told me that Samuel's labs are just going to be messed up for awhile as the cesium stimulates the immune system and since it is his immune system which has the cancer, it is going to attack itself and "swell." I had a reaction to the small dosage because I don't have cancer. That is good to know. At any rate, it did something to ME, so I know it did something to him based on the labs. We don't know how many of those blast cells are actually live vs. dead. So going on what is in front of my eyes, Samuel continues to feel better each day and we will continue to walk by faith and not by sight and believe that God has healed our son and that the numbers will manifest in their own time. Yesterday, Samuel's LDH was down again and his liver functions have resumed normalcy as well so both of those things were good news. I talked to the Onc clinic today and they are all baffled at the jump as well. So, we KNOW something is going on. Unfortunately stimulating the immune system for Samuel means stimulating both good and bad cells. The good cells need to go in and kill the bad cells and the major part of the protocol is crippling the bad cells so that this will be possible. Because Samuel is so young and obviously sensitive to everything that goes into his body, this has been a huge response. I just hope the WBC doesn't climb much higher.
I will tell you that seeing numbers like that sucks! Especially after seeing them going down. Unfortunately, we were making some very slow progress on the blast percentages so hopefully in the next two weeks we can see that change dramatically. Samuel's spirit remains strong. He told his RN last night that he prayed to Jesus to heal his body and his blood and every person we encountered there was fantastic to us. The MD attending was perhaps the kindest man I have met yet, even stopped in to say goodbye to Samuel and hold his hand. Don't see that very often. Everyone said they would be praying. We also ran into Mike, ICU Mike from 2004, another of our favorite RN's who immediately sought out every dinosaur item they had for Samuel. So we had a nice visit with her as well. We arrived at 6pm and did not get home until 11pm with the precious platelets. Seems like they are holding 5 days and he is needing them again. I am really hoping that the small stimulation to the red cells will manifest over the next few days to let us know that this marrow is indeed coming back.
We see labs again on Thursday so will try to enjoy the next few days. Tomorrow is Mark's favorite holiday and I see his kids are following suit. So we will try to make it very special for Samuel, celebrating his life, freedom from cancer and chemo. As I told the clinic today, this is about quality of life and I aim to see that he has it.
So, the battle is on, big time. And we can use all the prayers you can muster. Thank you all for each and every effort being made on our behalf whether it be prayers, love, support or finances. May God bless you for your sacrifices. This is not an easy life living from adrenaline rush to adrenaline rush, I will tell you that. The next two weeks will be critical for Samuel. We would like to see that ANC recover as well. Much love.
7/1/07
Samuel has had a fun day today playing at the school up the hill where no one else seems to ever play. We like it! I ran around behind him just thinking about how many platelets he must be using up with all the running, jumping and bumping. Oh, and I could just see him falling down and getting some cut which wouldn't stop bleeding but thankfully, that did not happen. It was a nice morning. He got sunlight, exercise and had tons of fun. I like that cancer treatment. I hope he was able to lose some dead cells through his biggest organ of all, skin. He sure was tired when we got home. This was his first trip out of the house since last weekend not counting the hospital and he just LOVES to go there. I am not kidding. Last time we were there, after being there over half a day, he threw a huge fit about leaving because he wasn't done playing yet. He has seemed a bit more tired today than the past few days and I also see lots of new bruises forming and suspect he will need platelets again. He has passed lots of "chemical" poop again today, but is pooping less times a day, perhaps back to the 3-5 which is more manageable. His butt has healed up nicely except for a slight spot or two in the very inside. And the "chemical" poop is not helping but at least the diarrhea is not nearly as much an issue. Thank God for that! He hasn't forgotten what it was like to have his butt hurt all the time and ask if it would ever stop. He hasn't needed any pain meds in several days so progress has been good on that front.
I have wondered today what his body is doing. Making new good cells is hard work and very exhausting. Plus killing the bad cells is also hard work. Not to mention that cancer cells put off their own toxins into the body and that is taxing on a person as well. His nutritional requirements are high since cancer is stealing whatever it can get a hold of. Today he has been hungry, a lot. More than usual. So he has gotten a lot of food via tube and you would be amazed the things I can get in through a tiny tube. So, it has been a little more work to keep up with this today but my hope is that his body is just working hard making new good cells. It has been difficult to get him to take naps and unfortunately, pooping seems to disturb them every day so far. Last night, however, he woke up, pooped and wiped his own butt without even waking me so that is always a sign that he is feeling good and the poop did not hurt him.
Tomorrow we will see labs again and get another glimpse of what is going on in his body. I really hope to see more good cells and of course it would be great to NOT need platelets since everyone has to juggle schedules for us to get to the hospital. I am not holding my breath on that one though. Tomorrow his new supplements arrive for the alternative protocol and the nicest thing about it is that many of them can be massaged through the skin bypassing his GI altogether and enter the bloodstream within minutes. They also pass the blood brain barrier which is another bonus. This should super charge what we are already doing and the fact that everything is compatible with what we are doing now but super charges the whole concept We know the ph principle works for Samuel so super charging it seems to be the best possible choice. This protocol has an overall cure rate and by that I mean CURE not five year survival, of 50% for patients sent home to die. Most of those have had their immune systems wiped out by chemo, radiation, and surgery and are sent home with their insides mangled by poison. Since Samuel's body has already begun to fight and conquer, my expectations are high, prayers even higher. And honestly, we have been in worse places than we are now. Three years ago, we had just arrived at Seattle Children's with a huge list of problems which seemed insurmountable. We wondered if we would ever bring him home. Two years ago, we were waiting for Samuel's next surgery to take down his stoma and that started a whole new aspect of hell. Last year, this was probably one of the worst months for Samuel's GI and pain with the anal closure. Samuel does not currently complain of pain, he is happy for the most part, he can play, eat and he still has a better quality of life than he did any of the past three years. And all that with cancer. It just seems we have dealt with so many worse problems. Having your child cry in pain every day for YEARS and being unable to do anything about it was MUCH WORSE than this. His suffering then does not even compare to cancer. It just doesn't. Isn't that a sick sad fact. We have been through way too much, helped him overcome way too much to let cancer have the final say. God has the final say and He gave his Son that we might have life, be free of sickness and disease, and live eternally with Him. Healing is ours, God said it, no me, and I already know that He is the only person who is trustworthy, period. Samuel is a living miracle and I am honored and blessed to see it first hand. Thank you faithful prayer warriors for standing in the gap with us for Samuel's life. We thank you for your love and prayers. May God bless each of you for your sacrifices for our boy. To God goes all the Glory, Amen! Much love.
6/30/07 - Preliminary Labs
UPDATE #1 Update 2 follows
PRAISE GOD!!!!!!!!!!! The Onc just called to give me the news and he is beyond floored.
Samuel's labs
WBC 13K IN THE NORMAL RANGE
HCT Holding at 31!!!!!!
PLT 41k Okay we knew this one will take awhile.
I don't have a differential back yet so don't know blast count or if there is an ANC but it doesn't matter because we KNOW they will have improved. PRAISE GOD anyway, this is going in the right direction! This is all diet, herbs and God. Glory to God, praise His name! The Onc wanted to know if I was giving the one med he sent us home with last week and I told him I gave it one day, he got diarrhea and I stopped using it. Oh, we are just SO thrilled here right now. Samuel is doing great BTW. More later. Don't forget to PRAISE GOD with us.
UPDATE #2 Differential is back.
The analysis of the WBC's shows blast count DOWN to 57%. It has dropped 10% in three days! Also, we have cut circulating blasts down in his entire body by another 50% since Wednesday. Again, this is HUGE. Samuel's ANC is up to 2% of his overall counts so approximately 260 with lymphocytes still in the normal range plus some Monos which indicates good cells are coming. ANC's tend to creep up slowly until they hit 500 or so and then jump by leaps and bounds. His hematocrit holding steady is a VERY good sign of marrow recovery as well. At this point, it is obvious that we have stopped the blasts from going crazy in the marrow and what is still left could be just spilling out but the exponential increase has stopped. This is extremely good news considering that it doubled in 12 hours a week ago which was very scary.. Also the blast count does not tell us how many of them are live versus dead so there could be a lot less than what we are seeing, just waiting on Samuel's body to excrete them. It is also obvious that the tumor burden on his body is not as big because he feels so much better. His LDH (tumor level) HAS dropped 75 points to 471 with 251 being the top of normal. Last week it was in the 600's so again, this is great news. His kidney functions have come back into the normal range and liver functions are down from Wednesday but still slightly high. I don't expect to see them recover until his body is done with blasts as it is the organ getting rid of them.
Overall, Mark and I are really thrilled with the labs and thanking God for such a huge turnaround. This did not happen overnight and it won't rectify overnight either. We both know that. But what we have done thus far has reached the marrow and is stopping it. Now the good and bad cells are neck in neck which is a far cry better than when his counts were 43k bad vs 9k good. I like the 7:6 odds much better. Mark and I talked a bit this afternoon about how it is much easier for Samuel's body to live with cancer than it was for Samuel's body to live with chemo. We are on day 9 of treating him hardcore with diet and herbs and he has good cells, good energy, good eating habits and is growing happier and more energetic by the day. He still has diarrhea but it is calming down and still smells like chemicals so we know he is just expelling dead cells which are obviously irritating. All this would be so much easier if he had a colon of course but we will continue to pray that as the dead cells grow fewer, his gut return to normal. We are only killing bad cells and allowing the good cells to come back. His immune system is taking care of the problem which attacked it. I don't have to worry about what the chemo will do next or what surgery awaits us because of it. I am looking forward to seeing that ANC climb back up, the HCT climb back to the normal range and those platelets recovering. That will be a glorious day indeed! But until then, we will take this joyous news with gratitude to God. Restoration has been promised to me by the Lord and I will NOT settle for less.
Next labs will be drawn Monday to check platelets and obviously everything else. But he could need platelets by then so we will see how they hold. Friday we will meet with our normal Onc, who still has no clue what is going on. I wonder how he will feel seeing Samuel's counts double and then fall back to normal ranges with blasts decreasing. I hope and pray there will be no talk of his impeding death by then. Samuel is s survivor. God hears his little prayers. He hears OUR prayers. He hears YOUR prayers. Please keep praying for Samuel's body to fight and overcome as well as for his GI to handle what it has to get rid of. Much love.
6/28/07
Just a quick note to LYK that Samuel is having his best day yet since we received the bad news. I had to coax him into taking a nap because he is just being the Energizer Bunny again. Based on labs yesterday showing elevated liver enzymes and kidneys needing more fluids, I have upped his intake via tube and he has improved even more as far as energy and happiness go. He was doing pretty well already. There is so much to do for him currently and my time is NOT my own. As long as he has blasts in his blood, this is a lifethreatening crisis. There is no doubt about it. Obviously the Onc on call has already written him off as evidenced by our visit yesterday and I reminded him that death isn't knocking on our doors currently so I was in no big rush to sign a bunch of death and demise papers. The head MD of palliative care came to see me, and she is an MD we know well from 2004. She even remembered our old room number. She asked to sit in on our meeting with our own Onc next Friday and I thought that was fine. I hope that Samuel's blood looks a whole lot better on that day so we can leave this talk about how he will die behind. The Onc yesterday was talking about the condition of Samuel's gut and how he could likely have leukemia infiltrate there and cause huge bleeds which would require us to go to the ER and have blood products and tons of interventions. Perhaps we would just rather him bleed to death I guess. I was thinking, "If you only knew the kind of GI stuff I have dealt with and corrected, this would not even be a conversation."
Home health is coming back to check labs on Saturday so we should know more at that time. I expect to see the numbers fall more. Samuel has averaged a loss of 7K WBC's a day so based on that, today should be 13K and tomorrow would be 7K. I don't think they will zero out because he is already making good cells. But this will lower the tumor burden on his body and the toxins cancer puts into his body as well as allow room for the red blood cells to come back and platelets as well. At least they won't be crowded out. Platelets are the last thing to recover so he might be dependent on transfusions there for awhile. We will know what his red blood is doing Saturday. He looks great though, other than all the bruises. Samuel has a normal amount of lymphocytes which are the cells we need to come in and fight the cancer so that is great. I would obviously like to see his ANC recover as well but am doing a lot about that simply with herbs to support the immune system but NOT stimulate more WBC's. All the other cells he does have, other than blasts, look normal still so this is good news. At his original diagnosis, all his cells were mangled, red, white and platelets. None of them looked normal.
An interesting thing I noticed when pulling out all Samuel's old labs from Tacoma that he has almost always had an elevated LDH. This is the measurement of tumor activity in the body. So, my suspicion is more concrete that he has always had this in there, but that his diet was enough to keep it at bay. When we changed that in order to heal his gut, it allowed the leukemia to resurface. Very interesting. The girls in clinic always mentioned that it was high but never really said much else since we had chosen to leave treatment. We knew in walking away last year that he had 1-2% abnormal cells in the marrow but they were unable to classify them as leukemia. I don't know what his marrow looks like at the moment and we do not intend to find out. Samuel's new treatment plan does address both the marrow and CNS so any cells in either place will be sought after and destroyed.
If you live in the Seattle Tacoma area, and want to help, there are some things you can do. One, give blood or platelets. Both times we have went in for platelets, there has been a shortage. Because Samuel has a shunt, he cannot wait long when his platelets are critically low. We do not want a brain bleed. Also, if you know someone who is raising grass fed egg laying hens who would be willing to sell us the freshest eggs possible, please e-mail me. I think I might also want to get unpasteurized goats milk so if you know someone who can help us out with that, please contact me.
Some have asked for our address so I have posted it above. Samuel likes to receive mail and he saves everything that enters this house. My other children appreciate being remembered as well. This is hard on them too. Kaysha likes to receive letters and will write back to anyone. Daniel has never really received any letters but he could sure use some writing practice. Obviously, we are taking a school break for the time being. Anna is the lucky one who lives in laa laa land without a care in the world. We all had a lesson in blood cells today so that they understand what is going on inside Samuel. Samuel is now telling his red cells to come back, his platelets to come back and his white cells to kill all the bad cells. He does not know he has cancer and I intend to keep it that way. He just thinks his body is not working right at the moment.
Seattle Children's called today to LMK that Samuel's next anal dilation is July 17. So I had to let them know about the relapse and that if he has no ANC, we will not be making it. I have not let the GI or ND know yet. Did not have time. So Seattle is calling the GI to let them know. They are all nice at that office so I am certain that their thoughts and prayers will be with us. I am so thankful that in this time, we have assembled such a great team of people.
We start his alternative protocol Monday or Tuesday, depending on when stuff arrives. I still have a lot of studying to do and time management planning because he will be busy and attached to his pump a lot. I am working with someone in another state with this plan and so far feel like it is the best choice for Samuel. In the meantime, we will continue to treat Samuel by diet and herbs, which obviously are helping tremendously and I thank God for the huge response. I was warned that he could get sicker before better but I think we have done a lot of the hard work already and hope that he will just continue to feel better. I was also told that if he gets a headache when we start the protocol, then we will know he has CNS involvement. At this point, he has no pain in his bones or his head. He has no fevers, and he says he feels "better than ever" still. We do not intend to do either a spinal tap or bone marrow aspirate to check for cells at the moment. If they are in the peripheral blood then they are concentrated in the marrow too. We probably won't see major marrow recovery until we get blasts out of the blood stream. Their diagnostic tests do not see everything and while they are a guide, they are often misleading. Else, people would not get ALL CLEAR on the tests and later relapse. I see no point. This is about quality of life and these procedures impede on that.
Samuel's body is adapting and I realized over the last few days that his poop has changed in color and smell. It smells mildly like chemicals except that he isn't ingesting chemicals. So apparently dead toxic cells smell like chemicals. Normally, a person excretes dead cancer cells through urine but for a person with no colon, a fair amount of cells will come through as poop. And this may well be the irritation he is experiencing. Diluting it more with fluids has helped a lot. He was up three times in the night pooping and peeing, but did not hardly complain. I do think we will be going through a lot of Neosporin for awhile though. I am just glad he is looking good, feeling good and the bulk of the bad cells have left his body. I guess as long as the poop smells like chemicals, I will know his body is ridding itself of cancer cells. He is fighting cancer the way God intended, with God's medicine and his own immune system. I believe in God, in God's medicine and I believe in Samuel's will to survive. My mom reminded me to receive Samuel's healing for him on the very first day this started and I did, and I do.
That is it for now. Special thanks to Eileen for graciously donating her milk to Samuel so that he might get some neutrophils as well as all the other wonderful things breastmilk has to offer. I considered relactating but I have so much to do that I don't think I can fully concentrate on eating and drinking enough to sustain. Please keep the prayers going for Samuel. We appreciate that more than you know. Much love.
6/27/07 LABS UPDATE
We just got home. He needed platelets which is no surprise given the amount of garlic and enzymes he has received. They were down to 11 today.
We have made great progress.
Friday his WBC was 52.5k Today it is 20k. Normal is 5-15k so we are going in the right direction considering it could have been and should have been in the hundred thousands.
He had 31.5 HCT so we are good there a little low but he usually runs 33-34.
Circulating blasts are 67% down from 84% Friday. If you work out the percentages blasts made up 43.7 of his 52.5 blood count Friday. Today blasts are 13.4 of the 20 so we have cut circulating blasts down by roughly 70%. This is huge!
His LDH is also down showing tumor load is decreasing.
It is all good news and very significant for five days time. His lymphocytes are absolutely in the normal range, last Friday they were not. He has an ANC of 200 so we still suck there. But he is not sick. Just needs to drink more/be hooked up to his tube more often to get more fluids.
He has been feeling better by the day because his cancer burden is decreasing. I warned the Onc that he was going to see a whole better set of labs. A new person there asked if he was on chemo and then asked what we were doing for Samuel. Someone actually though the lab messed up. Praise God. Please keep the prayers up. God is at work here. Samuel is resting. He needs to sleep to heal. His lymphocytes are keeping his butt healed but we still need prayer for his pooping to slow down. He has a lot of dead cells to excrete still. This battle is far from over so please keep the prayer chain going. Samuel is a fighter and his spirit is strong. Please praise God with us and continue to pray. Got a lot to do, got to take care of my boy, be back later. Much love.
6/26/07
Apparently Home Health decided not to come out today after all. Course they forgot to call to LMK so I did not find out until this afternoon when I called them. So now, we are just planning to go into Tacoma for a TPA assuming the line does not work. Big kids are going to Mark's parents and my Mom is taking Samuel, Anna and I. Oh, as always, this would be so much easier if I could drive. So we will be in clinic at 9:30am trying to unclog the line and hopefully getting some lab results. This would be extremely frustrating if Samuel was in need of blood or platelets so thankfully, he continues to thrive.
He has had a nice day though we really need to get the poop situation under control. It is not terrible at this point, but any even slight diarrhea irritates him. He is still looking great, perhaps even better than yesterday as you can see by the pics. There is so much you can do for blood issues. Red blood can be aided with green veggies and seaweed while platelets can be aided by veggies rich in vitamin K. It is no wonder he used to have 500K platelets when I was juicing for him daily. Of course the only thing you cannot do for them is give them white cells UNLESS you have breastmilk which is the only think I don't have this time around. However, it seems he is making good cells at this point. Certainly, he is not sick and is still bouncing off the walls running the big kids all over the house. If we could stop the occasional diarrhea spell, he would be feeling even better.
I made an appointment with Samuel's Onc for July 6th, the day he returns from vacation. Mary just returned from vacation today and called me this afternoon. She apologized for not being there for us last week but there was no need for apologies. She wanted to see how I am and I told her that I am not sitting here wringing my hands crying and worrying, I have lots of work to do helping him get better. There will be plenty of time for crying if he goes to the better place. Until then, I am not making any time to break down. I told her that I remain hopeful and will just continue doing what I have done the past three years, troubleshoot Samuel and fix him. If we learned anything in this last three years, it is that no one else is going to do it. And if in the end, he goes to heaven, we can look back and say that we tried everything and have no regrets. She informed me that the clinic was willing to do anything we need them to at this point and will support any treatment plan we decide. I have a plan so it will just await our Onc returning to sit down and go over it. I am SO thankful we came back to Tacoma because I can guarantee you that Seattle would have no part of what we are about to do. The Onc on call last week actually contacted our former Onc in Seattle to see if they had any other options but the only options discussed were Phase II trials in which no one is certain what the drugs actually do and it requires lots of monitoring, etc. Sounded like they had a conversation about how much we do not enjoy coming into the clinic.... At any rate, I received no commiserations from our previous Onc and I certainly would never give him a drug in which the side effects were not known. Moving on, Mary is simply the best SW and friend to us. She fully supports what we are doing and believes that Samuel is miraculous. I told her I was expecting a completely different set of labs this time as I think this has possibly been going on for at least a month and a half. So our conversation was very positive and I am so thankful that Samuel likes the staff and office there as well as the fact that WE like them too. She asked if I have been sleeping and I would have to say no, not really. Sleep has been hard. At first, it was just worrying and then it turned into researching and going back in my mind to what we did in 2004. Lots of thinking about how to deal with the issues we presently have. I hope to sleep better tonight but I have been using benedryl nightly to help. Eating has been hard as well though in the last two days, my appetite has seemed to return. It is hard to do all this with little rest and food and I know I need to take better care of myself right now, but it is difficult.
Mark has been back to work the last two days and it has been hard for him to be away, not seeing Samuel or knowing first hand what is going on. We are both remaining positive and keeping ourselves only in the presence of those who are also positive. I don't have room for negativity, doubt, or pity. We, Samuel's parents, have a job to do and we will do it. With a WBC of 54K on Friday and 84% blasts, no "treatment", etc, Samuel should be in a very bad place, he should be getting progressively worse but instead is getting progressively better by the day. Those white cells double daily so even if diluting them with blood products brought him back to 20K, by today they should be over 300K and I just don't believe we will see that tomorrow. I believe labs will look a lot more normal and that perhaps blasts might still be present but they will be a lot less. I anticipate seeing some neutrophils and good cells circulating. The two sticks from needles into his port yesterday did not bruise at al as they did last week. I don't see any new bruises today and he has been less than careful. Everything he had is healing. He has some GOOD cells in there in the Name of Jesus. Samuel is a fighter and his spirit is strong.
We appreciate everyone who is coming into agreement with our prayers right now. We appreciate all the kind notes and prayers going up for our son more than you will ever know. Some nights I am just awake praying because there is so much to do, read, and caring for Samuel and the other kids that I just don't pray a lot in the day. It is nice to know you are covering us with prayers. We appreciate you spreading the prayer chain for us. We appreciate everyone's efforts to help our family at this time and are greatly humbled by the outpouring of love and concern for our boy. I believe Samuel IS healed. I am not calling this cancer, but simply a blast crisis. I know we can turn those cells around. Samuel will live out his destiny that God has set in front of him on this earth. Samuel will change lives because of his situation. This is God's child. Again, I let the Lord know that Samuel is HIS, not mine and that I will follow His direction. All I ask for is Mercy, whether he lives or his spirit goes to Heaven. He deserves Mercy. It is such a privilege to be his Mother and witness God's grace and mercy. There is no other place I would rather be than right here in this family. Much love.
6/25/07
I added a new pic tonight. Is it me, or does his color get better and better with each day? Samuel has had another good day today. No fever, his butt is almost completely healed up now though we have yet to get this pooping under complete control. Things on that front are a lot better and he had no pain today and did not need any meds. He did have some stomach pain however and it is from one of his herbs which goes in and finds bad cells and kills them. We have been playing with dosage and food additives to get him the most amount of it with the least amount of side effects. If this were chemo doing this, it would piss me off but knowing that it is something good which only kills bad cells makes me continue to try to find the right combination for him.
Home health care came out today and what I thought would be a short visit took two hours. Samuel's port did not draw. And even worse, it did not flush either. So it probably has a clot in the line now. They are going to send someone different out tomorrow to try again and if it still does not function, we will have to head into clinic to have TPA done and hope to save the line. We are 99% certain that this line has a sheath on it anyway, and it seems like getting platelets just seem to cling to it and make things worse. Samuel's very first PICC line did this very thing after getting platelets and it was a huge pain because a line that does not flush or draw is useless. The ladies who were here today were fantastic and just in awe of Samuel. He continues to bounce off the walls.
I talked to the support person for the alternative protocol we are now going with. He wanted to be absolutely certain that we are NOT doing chemo and will not be harassed by an Onc because chemo and this protocol are not compatible. No problems there. He also was a great source of information on several other fronts. I could really see how God led us in the beginning of all this some three years ago, with diet, supplements and how things were prepared. I got some other incredible info from him today on ways to help Samuel feel better during this "blast crisis." It is all so exciting and I will share the info here at a later date. Just don't have time now.
Things are busy, Samuel requires a lot of care. For the last two days, he went through underwear like crazy. Things slowed down a lot today thankfully. I am so thankful that we have spent the first six months post his anoplasty healing his gut from the inside out. There would be no way he could handle this diet change otherwise. I just pray that his gut continue to adapt. Previous to his ileostomy take down, he was on a 75% raw organic diet. Only thing cooked was his chicken stock. Since things had become so terrible with his gut condition, he had to go to a 100% cooked diet. The stock was still okay, he lived off that for months last year when he was not able to eat food, but the rest of the foods have allowed for his ph to become too acidic. Acidic cells allow for cancer. Perhaps he has always had leukemia but we have kept it at bay with diet. Since the change, it was able to resurface. I do believe that. I hope we see labs that show a major difference tomorrow assuming that line works. Obviously from the picture I posted, he is not in need of red blood any time soon. He just gets pinker. And his port was accessed twice today with two different needles and hardly bled. We did, however, notice some bruises we do not remember if were there or not so we are watching him closely.
So, the update in a nutshell is that we haven't given up, we haven't lost hope. We will continue to fight with God's medicine just as we always have. We have done nothing less than build his body up, repair his got from the horrible damage of the past three years and now we plan to kill the cancer for good. We have never formally done an alternative protocol because diet and the chemo seemed to be enough. I believed that cancer was gone and it was not necessary. Obviously, I was wrong. I am thankful that he is so healthy, and that his gut is healed enough to make the major diet switch again. So, now we will do both. We continue to lay hands on Samuel and remind him to pray for himself as well as tell his body, out loud, to work. "Tell your body to work, tell your blood to work, tell your bones to work." And he does it. Even little Anna prays for Samuel every night though she has absolutely no clue why. The big kids are hanging in there though they have had some rough moments. They know we are not giving up and that we look solely to God to continue to lead us as he always has. And if nothing else, use this situation for the greater good. Samuel is a fighter and we intend to capitalize on that. He should have died three years ago. His spirit is strong. And for the record, should we ever get to a place where we decide it best to send him home to heaven, we will. We will not trap him here in a body that fails him. He has suffered way too much and we are not that selfish. Will it be hard? You bet. Thinking of him not being here makes me sick and tearful. It is unimaginable. We just don't want him to suffer a long drawn out miserable death. With his will to live, we fear that is what it would be. I talked to him about heaven today, where it was, who was there and when you are supposed to go there. "You go there when you are old and done with God's plan for you on this earth. Little children are supposed to stay with their mommies and daddies. " Jesus died so that we might have life, not die young from a miserable disease. I just won't accept anything less than God's Glory. My children are learning a valuable lesson on trusting God during this time and in my private conversations with God I remind Him to not disappoint them.
Thank you all for your prayers, and those doing fundraiser's for our family at this time. Our insurances does not cover alternative medicines so we bear that financial burden now. You cannot put a price on a life. Samuel is the super glue for this family and he always has been. He deserves a chance to live a good quality of life for more than just the past two months. He does, and he will. Much love. May the Lord bless you all.
6/24/07
Just a quick update to LYK that Samuel has had another good day. It seems like he is past his cleansing crisis though we dealt with diarrhea just about all day....lots of probiotics and a little morphine helped a lot. About 3pm he got up from his nap and seemed "back to normal." That was about 48 hours after his transfusions and tons of packed nutrition, high ORAC essential oils to flood his body with oxygen and kill bacteria, herbal treatment for microbes and fungus as well as colostrum to help fight this. Truly, I have an arsenal here of things to use. He was running around here trying to get everyone to play with him. Most of the morning he laid on the couch and yesterday he was easily tired as well so this afternoon was a huge step in the right direction. He ran around here like a nut with me behind telling him to be careful as I don't want those platelets being used up. No fevers, and his butt has almost healed up. I expect to see it looking tons better tomorrow. I also expect to see a whole different set of labs. It is going to be a busy day but we are expecting miracles and I refuse to settle for less. Samuel should NOT be healing if he has no white count. Yet, he is healing and full of energy running all the kids around til he drove them crazy. I finally got him to sit down and color. We continue to thank you for your prayers and love. Please don't stop. We give praise to our God of miracles tonight. Our son is healed in the name of Jesus.
6/23/07
First off, if you have not read the 6/22 update, this one will not make sense to you.
Secondly, thank you all for your prayers, notes and love. It is wonderful to be surrounded with prayers at this time as I have a lot to do. Please continue to spread the prayer chain for Samuel. We have come way too far to surrender to this bump in the road now.
With all that said, Samuel has had a great day. He is doing well for a person who is supposed to be dying. I don't believe that. I refuse to believe that. It is good to see the color back into his face but he has a lot of bruises. A lot. Today at the creek, the kids were throwing rocks into the water and Anna accidentally hit him right on the side of his face with one. Now he has another bruise to eat up his platelets. He face looks really awful currently and he refuses to be careful so he just keeps adding to the growing number.
So, this all began last Tuesday. Mark accessed Samuel's port and at first it did not draw at all. Just like usual. But suddenly, it drew especially well. We were happy. I thought how nice it was that it works and that bought us another month free of doctors. But when Mark deaccessed the port, it bled and bled and bled. Samuel's incisions never bleed. Never. So, that was the first thing that started the red lights in my mind. The next day, the port area had developed bruising. This never happens either. My mom came over and I asked her if she thought Samuel looked pale. She remarked that that was the first thing she noticed when she came in. Later that day he got a bloody nose. Daniel got frightened when he saw it and said, "Oh, no, Samuel must be sick again, he might die." That was Wednesday. On Wednesday, I doubled his intake by tube and added raw greens figuring he needed iron and was just a little anemic. He is always borderline simply because of his lack of anatomy. I hoped to see an improvement by Thursday, but only more bruises and more pale. At this point, I had not mentioned anything to Mark or the kids yet. Samuel looked sick. I asked Kaysha to look at his tongue, based on Chinese medicine, we are always inspecting each others tongues and she remarked that it looked pale. "Paler than usual/" So I called Mark at work and ruined his day by letting him know that Samuel needed labs drawn immediately. Neither of us wanted to assume the worst but it was very difficult given all the signs. So I called the Onc clinic only to find out that my Onc was on vacation for two weeks. But we were able to get orders for his labs to be drawn in a nearby town hospital so after Mark came home from work, we accessed Samuel's port again and of course, it drew. No clots now. We went to the hospital where we first received Samuel's diagnosis three years ago. The drew a stat CBC and handed us the page without comment. Mark started reading me the numbers and was unsure of norms but as soon as I heard them, I grabbed the sheet from him and read them myself. Platelets were 19, Hematocrit was 19 and White Blood was 30. I cannot even explain to you the utter feelings of demise we felt that moment. He had 99% lymphocytes which is the most immature cell but this was probably misappropriated and was truly blasts. All 30K of those cells were worthless. And Samuel was happy and full of energy in spite of that. Mark's Dad had come over earlier that day to get Kaysha and Daniel to swim so it was just Anna along for this ride. They did not have a clue about anything. We told Mark's parents once we arrived and I had the Onc on call paged. It happened to be our first Onc. I went over the labs with him and he was fairly sure it was relapse, as we already knew. He talked to me for about 30 minutes, in fact, I was trying to get off the phone and he kept talking. He briefly went over our options and I told him that every drug option needed to be weighed against Ibuprofen since Samuel cannot even take that without having an adverse gut reaction. It sounded like there might be a few interesting things to consider and I told him to make me a list and bring all the side effects with it so we could decide. The plan was to arrive in clinic first thing in the morning, Friday for transfusions, etc. He felt Samuel would be fine overnight. We decided to leave the kids with Mark's parents but take Anna with us since it just seemed so unfair that she has been with Samuel through everything, she might as well be by his side now.
Well, I was very concerned about his shunt and hemorrhage in his brain. Very concerned. I know in Seattle they take shunts and platelets a lot more seriously than in Tacoma. So, I did not sleep all night. I tried to, but had horrible nightmares and ended up going into his room every hour to check on him. At 4am, he woke up saying his tummy hurt and that it hurt to breathe. Later he puked. After that all the small veins hear his eyes pooped under the skin so we paged the Onc again and let him know we were heading in to the ER. He had notified them of our arrival and due to Samuel's no immune system, we were escorted to a room immediately. We also saw a doctor immediately who had labs drawn and ordered platelets. Once labs came back, it was reported to us that Samuel's platelets were now 15, his WBC now 54 and his HCT was UP to 21. That baffled them just a little. And despite his low hemoglobin, his oxygen sats were 98. That was something that concerned me so I was really happy to see he was getting enough air. Blasts were 84% and Samuel had NO ANC at all. The MD told us that and said that he wanted to put him on antibiotics. We refused and they were very understanding about why. Antibiotics will ruin Samuel's gut lining and cause diarrhea. That will ruin his outer skin and if he has no good white cells, there will be nothing to repair the damage. It is a really sick thought. I can do so much better with herbs, which is most likely why he does not have an infection.
Everyone was amazed at his energy, his joy and that he was not sick, no fever at all. His temp was 97ish the entire day. Our first Onc responded to Samuel in the exact same way he did originally. "He looks amazingly well considering." I have to give props to this Onc because he was just fine all day and handled things with us well. I would have preferred my other Onc, but at least this Onc has a really good idea of what happened to Samuel and he doesn't seem to have forgotten much of any of it. Anyway, we were eventually moved from the ER to Oncology Clinic, which was nice because I like everyone there and everyone knew what was going on. They handed us $20 in food vouchers so we could eat. Who could eat? I couldn't. Drinks were fine but food was just out. Being up all night did not help at all either. Platelets were delayed due to a computer glitch and then a short supply. So we pretty much sat in the clinic and played until about 9:30am when the Onc came in to speak with us. So we went over all the options we will not do. Transplant is the normal course for a high risk ALL relapse. Obviously, that is never going to happen. We were offered some other experimental drugs used for other conditions but failed but side effects seemed to be useful for leukocytes. We were able to choose one from the list and there is another option, kind of a super vitamin A which is supposed to help mature the blasts and turn them into normal cells. They have to order it and it has a lot of side effects. I think I could load Samuel up on carrot juice and do better after looking it over.
Then we went over the inevitable list of ways he can die. Well, let me say that there is no dignity in any of the ways presented. He can get an infection and die of sepsis. Apparently this was one of the best ways to go. Well, I remember sepsis and I don't think I care to ever see that again. Or he can have leukemia infiltrate all his organs causing them to close down, his body to fill up with fluid until it reaches his lungs and heart and crushes them. When he had CSF draining into his abdomen, we got a little taste of what this would be like and I did not like it, did not like it at all. That would be a horrible way to die. He can have CNS disease and stroke. We already had that fright too and I don't care to have a comatose boy again either. You get the picture. Then we got the DNR paper to work on. This Onc thinks that untreated Samuel could go up to three months just with transfusions but eventually they would stop helping and death would come in some horrible way that my children will have to endure. Hospice can come out to our house and he can die at home, or we can be inpatient. It is pretty sick. I decided that we really only have two options, either Samuel die peacefully in his sleep when no one is expecting it or he gets another miracle from God. That is it. He has suffered enough.
So after this discussion, we went to infusion and he got his red blood first which took three hours and then platelets......finally after waiting all day. He was pretty happy and Anna did really well considering we arrived at 5am and left at 2pm. Neither had a nap. Mark and I talked a lot neither one of us believing that we will have to let him go. We both agree that conventional medicine has no other options for us that we will put him through.
So, we left with the one drug in hand and even the pharmacist knew what we were facing and was very kind. Mary was not in clinic Friday so to my knowledge, she does not eve know yet.
We came home after the longest day in my life to date and I filled Samuel full of raw veggies, and some of the older cancer alternatives herbs I have had shelved for a year or so. I actually had started this earlier in the week just to give him back some iron with all the greens. He was feeling fine, happy to be home. Mark's mom brought the kids home later towards evening and Mark sat them down and told them the news. Both cried. They are no dummies, they knew something was up from the night before. Mark told them that the doctors cannot fix Samuel, it was up to me and God now. He told them that Samuel might have to go be with Jesus. He also told them about Samuel's NO immune system and now we are all hermits again. Everyone washes, cut their fingernails off, and they do not get to go out with other germy people.
We spent today playing at the creek, taking pictures, video, etc. It is hard to imagine that these might have to sustain us. Samuel was happy and energetic today though took a five hour nap. We went for a walk this evening and he ran around like a happy go lucky little boy. No fevers, nothing. And it seems that my veggie juice caused a cleansing effect, diarrhea and his skin broke out. Not good. With a normal immune system, this would heal overnight. But he supposedly has no cells to heal this now. So he took a few baths today and had a little morphine. I have radically changed his diet, adding some herbs back which were removed as well as several supplements and colostrum. I had Mark look at his butt before I put him down for his nap. After he got up this afternoon, it was actually better. Yes, better. It should not be better. Yet it is. Hmm. My hopes is that with the flooding of raw food nutrients and herbs, etc, we CAN mature those cells and when they mature they will go in and heal Samuel's skin. I pray that is the case. It is a very shaky ground to walk though because we don't know.
So backtracking a bit. Marla sent me a note today thinking that he has had this issue for awhile if he needed transfusions of both blood products. Usually hematocrit sticks a little better. In thinking back to a walk we took over a month ago, I remember Samuel looking similar to the way he did this week. Very pale, photosensitive, tired, grumpy, etc. And I gave him extra supplements and he improved and looked better. Now, we are wondering if he has had this for at least that long and that as his g-tube diet became less and less, and his table food became more and more, if that gave leukemia a chance to come in. We do not think it is an accident that he has remained in remission for over three years. But now we are really analyzing his diet and what things changed this month to allow for a relapse. And feeling hope that we will change this diagnosis.
The Onc of course told us that Samuel is palliative care. Any treatment they do would be to prolong, not cure. We know that. We knew it last year when we walked away from chemo. This is not big shock. I am certain they felt shocked when we weren't begging them for cures, answers, etc. I know they don't have any. At this point, we do not know if Samuel has CNS disease. That would require a spinal tap which we are not willing to do at this moment. He did actually complain about a headache this past week as well but nothing since. We will wait and watch at this point. The way things are now, home health care will come to draw labs Monday and Thursday to determine if Samuel needs transfusions and obviously check the WBC/blasts. We really feel like something is going on with Samuel. He is fighting this. We are giving him the tools and he is fighting. His butt should NOT be healing and it is. His hematocrit should NOT have went up, but it did. He should be sick and he is not. We praise God for His miracles. We know HE is able to do what no man can. I pray for His guidance. And with that said, obviously we will know more Monday when we see labs. We will also know more tomorrow when I see the condition of Samuel's butt.
Mark is planning to continue to work. Obviously, we will not be attending the picnic tomorrow which is sad as I was looking forward to it. He will work as much as he can and my Mom says she will drive us to clinic as needed during the week. This drama has gone on way too long and we just do not have the means to survive and both stay home. We will literally lose everything. So for now, that is the plan but we will take one day at a time. Thank you to those who sent donations. I don't know what we would do without the kindness of our Internet family. We are still in the process of getting caught up on bills even though Mark has worked for a month now and at this point, no matter what happens, we will have to take on more debt. Thank you. God bless you.
I just pray that what I saw a month ago was what we saw this week. That gives me hope. I pray that we wake up and Samuel's skin is remarkably better. That will give me hope. I have decided upon the alternative treatment I think we will pursue along with diet, etc. But I won't be able to find out more about it until Monday either.
We do not want our son to die. I do not want to watch him suffer any more. Kaysha, Samuel and I laid hands on Samuel's body today and declared him healed in the name of Jesus. We believe that Jesus gave each of us the power to heal others by laying on of hands because He lives in us. We are reminding Samuel to tell his body to work, tell his blood to work, tell his bones to work. He is praying for himself, laying hands on himself and believes Jesus already healed him. He wants to know why we are still praying that prayer, he says he is fine.
And I am pretty certain I know what you are all thinking so I will remind you. Miracles happen. We believe. God is bigger than cancer. We have not given up. We do not surrender him to death. No weapon formed against us shall prosper. By His stripes Samuel is healed. That is it. God said it. He is our final authority. So I have decided that he is not sick, that this is manageable just like everything else that looked impossible has been. Perhaps we have been managing it for years. If that is the case, Samuel will have to become a vegetarian.
Please keep praying for us to have wisdom, for Samuel's body to heal itself, for God's hand to move upon us once again. Keep my older children in your prayers. It is so much to take in. Much love and thanks.
6/22/07
The update I believed I would never write. Our lives have taken an unbelievable 180. We found out yesterday that Samuel has relapsed. Apparently his leukemia is back. We spent all day at the hospital today getting blood and platelets and had to go through the ER after getting labs drawn last night in our nearby town. We are beyond devastated, haven't told the kids, haven't slept in two days and spent the day in a haze I thought I would never have to endure again. Please pray for our family. As you know, there are literally no medical options for Samuel in conventional medicine. He currently has a WBC of 50k, almost doubled from 30k last night and it is 84% blasts. He has no ANC so infection is a serious risk. They call it bone marrow failure. We are trying one low dose drug that is actually indicated for a totally different condition but a side effect of it is to lower the WBC and bring up the ANC. That and we are back on the research trail for alternative treatments. Samuel is NOT sick physically. They were all very shocked by that. And he says he feels "better than ever." I feel like I have been kicked in the gut. Our Onc is not in the clinic for two weeks so we had a different one, our FIRST Onc when Samuel was originally diagnosed. So, it has been a very grueling day because we know that once again, Samuel needs a miracle from God. No one on this earth can save him. Please pray for our family. Pray for us to find a way to tell Kaysha and Daniel. Pray for Mark and I. Pray for me. This is my baby who I would give my life for. We have fought way too hard to have things end like this.
6/15/07
Samuel is doing great and enjoying life. Exactly everything we have wanted for him. A few days ago, one of my fav RN's, Esther, dropped me a line to check in. It was so wonderful to let her know how far Samuel has come, how well he is doing now, and that he is finally happy. He finally has quality of life. We certainly don't take that for granted and we have worked so hard to get to this point. It has been awesome to just write good updates, post happy pictures and live a life that revolves around our family, and not just what is wrong with Samuel at that moment. It has been awesome to have some time to actually read a book about teaching school rather than anatomy of the gut. Kaysha and my favorite show for summer is back on and we are enjoying watching it together. Samuel and Anna become better friends by the day. I go to bed each night thanking God for another GOOD day. Another day of being blessed with my family, healthy and intact. Still somehow, I am walking forward into what life has to offer, and yet still looking over my shoulder at the past to see if it is really gone, or if it is just waiting for me to get to comfortable before something else happens.
And something always happens. It seems inevitable. Doom and gloom are all around us. I have looked back at each year and recalled whose family had some tragedy, either ours, or one of our parents, siblings, etc. Cancer, sudden death, illness, some accident, some terrible family drama. I look at us here, in this house, within these walls and I savor each day that is good knowing full well that the memories we are making today may well be the ones which sustain us tomorrow. I want to be sure we have enough good memories. I want to be sure that we can look back at all this tragedy we have survived and say it was worth it. I want Samuel to be able to look back one day and be glad he lived rather than wish he had died.
Kaysha said something the other day that really got me pondering....."Life sucks." Yes, I am certain we have all heard this, some more frequently than others. We often agree, yes, life sucks. Kaysha said her life sucks because she was unable to do something she wanted to do at that current moment, such as ride her bike down the hill. You know, something childish. But it made me wonder then, if we as adults agree that life sucks, or the saying "life's a bi@@@ and then you die," why then do we bring children into the world? Why do we do everything possible to help them live in a place that sucks if they are very sick or have no quality of life? It would seem a rhetorical question leading us back to the "Why are we here?" question. I think we can honestly tell you that life has sucked the past few years. Samuel's more than anyone's but we have all made sacrifices. In thinking about Kaysha's words and my own spontaneous agreement to them, I have challenged myself to figure out how to get out of this thought pattern. I don't want my children growing up thinking life sucks. I don't want them growing up thinking I have brought them into a world where life sucks. We are here for more than just ourselves and we enjoy things more when we follow God's plan. God's plan for us is to have joy unspeakable and abundant life. I don't recall life sucks being in the Bible anywhere. Yes, we will have turmoil in our lives but we are to have faith in the Lord to see us through. He put us here, so we look to Him to sustain us, and show us how to move beyond life sucks and into joy and abundant life. I feel that way about my kids and especially about Samuel. When his life "sucked" and that is really putting it mildly, my whole life revolved around getting him better, and having quality of life. I took it really personally that if he should live through this, he should have the same quality of life that we do, if not better. It seemingly took forever to get here and yet, we did. I can only imagine that God must feel the same way about each of us, his children. He put us here and we are His responsibility. He wants us all to have a great quality of life and He wants to right all of our wrongs. He wants us to look to him for all things the way our children look to us. And do we do this? Do we rely on God as a parent the same way we as children relied on our parents for everything? No. Not always, or only when times get too hard. I just immediately thought of how many of our earthly parents had shortcomings which eventually made us NOT rely on them. It is hard to imagine a father with no shortcomings for me. Yet, I look at Mark and think how good my children have it. He is the best father I know living on this earth. And yes, he has his shortcomings as well, (who doesn't) but his kids love him, rely on him and he is there for them always. We have fully relied on God for Samuel's healing, restoration and quality of life. It was obvious very early on that no one had a clue what to do for him. I am changing my life around to fully rely on God for all of our quality of life. It is going to take some work! I don't want to raise my kids thinking life sucks. I want to raise them the way God planned for us all to live no matter what the world has to offer or take away. It is amazing how the words of an almost 11 year old can challenge you mind. I know God is responsible for us, He put us here. If He feels more compassionate toward us and our troubles than I feel toward Samuel and all of his issues,( as if they are MY fault because "I" put him on this earth), then I definitely want to rely more on God than what we can do for ourselves alone. If I can learn to do this and turn around my thinking about "life sucks" then my children can learn from example.
Moving on, yes life's drama has not been far from our lives. Mark's father was hospitalized with complications of diabetes this past week. They think they know what caused the problems and he is home now, doing better. But still scary to find out your Dad is in the hospital. As we know all too well, you have to be SICK or have something really wrong to end up there for a few days so that is never a good thing IMO. The hospital is the last place I want to be. Then that stupid vertigo got me again this week. I have been having WAY too many episodes of this as of late. Now that Samuel is doing so much better, I am going to have to figure out what I am doing that is either causing it or what I need to do to stop it. That stuff is really awful! Father time caught up with Mark this week as one of his teeth that has been slowly falling apart the past few years decided to get very painful. We have no insurance. Of course his insurance kicks in in about three or so months but obviously, the tooth was not going to wait. He has sacrificed his own needs way too long already!
So I have some very special thanks to Dental Health Group of Bonney Lake for getting him in, same day, and doing the temporary repair for CHEAP. We will get it fixed for good as soon as the insurance kicks in. At first it looked like Mark was going to have to use half his paycheck to get relief but they really treated him well. We had to wait til today to even think about calling for an appt anywhere as this is his payday. I don't usually play the "my kid had cancer and almost died so we have no insurance because my dh could not work" card because I figure most people don't give a crap or think you are a big liar. But I did it today hoping they would take pity on us and give a better than 5% discount for a desperate cash paying person. They were wonderful and I thank them and God. They were the first place I called this morning that actually answered the phone. I thought it would really be miraculous if someone could get him in with no notice. He is not an established patient anywhere and yet they did. As I was calling I thought, "God, this is YOUR problem so I cast this care on to you to find us help fixing it. I am not going to worry about how we will pay for it and the other bills too, this is YOUR problem." We will definitely be going back. It is so nice to find compassionate people who can really help in your time of need right in your own neighborhood. So it was a good experience all around and now Mark can have a good Father's Day weekend.
We have all been very fortunate these past few years to have no major health concerns or problems. Having no insurance means you just don't go to the doctor or dentist unless it is life and death. Thank God the rest of the kids are doing fine. We are all looking forward, okay kind of, to seeing the dentist in the fall.
While I am thanking people, I have to thank Enviro Textiles for taking care of the business needs. They really helped me out this week saving me some $ as well. These people are SUPER and care about us. I just love doing business with people who give a crap about others. I guess I am still trying to get over last year's situation with the doctors and Medicaid because I just feel amazed when people actually want to help you rather than step on you and your whole family. We are just trying to get on our feet here so every dollar saved helps. Seems like you run out of everything at once and then stupid money stealing things come up, like rotten teeth.
So another weekend is upon us and we are all starving for fun and family time. Mark has been miserable for the past several days. Being stranded at home while he is gone so many hours a day is still hard on us. It makes for a long day so we try to make the most out of the weekends together. Not that we don't have plenty to do during the days around here because we do. This is a busy household and looking back I am amazed at how many other things I used to do along with things I still do. This past week, we made pizza and sourdough bread again and Samuel can eat it with no issues. That has been so wonderful because it is probably one of his favorite foods. The kids really enjoy making their own pizzas too. The popsicle molds finally arrived so they get all sorts of good stuff frozen and are having fun thinking of new ideas for treats. Yesterday I made sour lemon popsicles and it would seem that only Daniel can eat them. Too sour for everyone else. Probably make coconut cream popsicles and blueberry yogurt next.
Last weekend a friend dropped by unexpectedly whom I have not seen or talked to in over a year. Pretty much when things started to go downhill with Samuel, I lost touch with people I used to be friends with here. She has been calling and I have not been calling her back. I don't call anybody back. It has been terribly hard to connect with people lately. I guess she wasn't offended. It was really difficult to explain all we have had to deal with this past year. Obviously, she doesn't read the website. I really realized how much we have changed and how little others have changed around us. There are just those days when you wake up and realize you have nothing in common with your friends. Well, I have known this for quite some time, but she didn't. All this time, we have chosen to surround ourselves with each other as only we know what we have been through. Explaining it to others who choose to be oblivious when the information is out there is a little annoying. We told her a little about the herbs we have used for Samuel and she asked, "Does that stuff really work?" She thought he has had all these issues because he had relapsed. It is just so much to take in and so hard to explain to someone who was never around, whose only child is in good health, who doesn't have to work, etc. What do you do all day if your only kid goes to school and you don't have to work? I just wonder about that. There is quite plenty to do here. I feel a bit selfish with my time right now because up until recently, there has been no time for me to be me. I am still trying to remember who I am and what I used to do. I am trying to remember who the heck I was before all this happened and if it still applies now. I'm waiting on God to show me how to move on and what things I need to do to heal myself and this family. Somehow it is like I am just now getting to pick up all the pieces of our shattered lives and it is hard to know where to start putting them back together. I am sure it is all just an adjustment period.
Mark's job is great. They love him and vice versa. We could not be happier about that. Of course that now means we cannot simply move away. At least not very far. So my next thing, as soon as bills are caught up and manageable again, is til find a place to move Bud back close to home so I can actually see him. Doesn't seem like God's plan is going to be for us to move THIS year, ugh, and so at least, I can move my one hobby close to me. Currently, he lives over an hour away and so it is a day trip to go out and come back. Anyway, now that things are better, perhaps I can find time to see Bud and ride again regularly if he was closer to me. This is on the back burner for now pending finances but hopefully soon. I miss riding off into the sunset for a few hours. A few hours of alone time always did me so much good and I miss Bud. He is such a sweet little horse. And of course, the kids want to see him and learn to ride as well. Anna was afraid of him last time, now almost two years ago but thinks all white horses are unicorns and says, "Hi Uni," everytime she sees one. So she should be okay now...one hopes.
The company picnic is coming up next weekend so I will be able to meet Mark's co-workers and reunite with Karla for a visit at that time. We are looking forward to that. Samuel does not have anything medically on the schedule for now. We still do not know if his port draws so hopefully Mark will feel like doing that this weekend. I pray it does because I am enjoying the vacation from doctors so much. Of course, now all the kids play "hospital" when they do pretend play....ugh! We need to have a little fun so we can play "beach party" or something more appropriate.
Speaking of the kids, Kaysha and Daniel's SAT's finally arrived and I am pleased to say that they both did well. Kaysha's scores were all between 5th and 9th grades. She took the 4th grade test. Well, all except for listening which was around 3rd grade I think? Let's just say we are not shocked. They have her using information scores near 9th grade levels and listening in the 3rd grade. Hmm. For the last several years she has tested, we ALWAYS find this score funny. Daniel's listening score was about the same as Kaysha, except he took the 2nd grade test. He was between 3rd and 5th grades on the remainder of his scores. This was his first year to test so we are proud of him. The scores are always a new starting point for the following year as they suggest weak areas and show us where we need to go from here. Obviously, both kids are working beyond grade level but as I understand the school system in this state, the standards have been lowered quite a bit and we strive for better. We do a lot of Montessori style learning here and that works well for them. In total, we school about three hours a day on average so it does not take all day, and they have tons of free time left over to play or do projects and art.
The weather has been cool and rainy off and on and Samuel definitely does better physically during those times. We just passed the three week mark from his last dilation and that was where I noted a change last time. Monika will cringe at what I am about to type. Yesterday, he ate nuts. Quite a few of them. Apparently if they are salted, he doesn't care what kind they are either. Well, apparently he did not chew them very well. Not well at all. So I can tell you that he is doing VERY well because they all came out in the toilet this morning. There is no way he could poop out nuts with no pain if his anus was closing up. Yes, he pooped nuts. I guess that should tell you how well nuts digest if you don't chew them into very tiny pieces. If he had any internal intestinal issues at all, this would have certainly caused a blockage. I thought about it only AFTER he had pigged out. But you can imagine my surprise this morning. We had yet another talk about chewing this morning but it was a good sign indeed. Hopefully, his anus will just NOT close up and we can close this horrible chapter of our lives for good.
Sad news this week. A girl I have followed since 2004, Rachel, passed away. Heartbreaking. Reminds a person that nothing in life is certain but death. Reminds a person to enjoy today because tomorrow everything can be taken away. Cherish your every moment. While this lovely family will see Rachel again, their hearts will always be aching for her presence. It makes me sad, sad, sad to think of this. I feel very lucky that Samuel survived the odds he was facing. I am thankful he is here because I do not ever want to feel the pain of losing a child. But I also know the decisions we have already made about letting him go should he ever relapse. So I enjoy today. I expect plenty of tomorrow's. Samuel is God's child and God's responsibility. God alone knows His plan for Samuel. I am so blessed to be a part of it.
Wishing all fathers a wonderful day. Praising our Father in Heaven for taking care of us and holding us tight in His hands. May we all learn to rely on Him more. Much love.
PS. Mark just arrived home and says he feels SO much better. Yeah!
6/3/07
It has been a glorious weekend! The coffee was magnificent and Mark and I really enjoyed the days together after what seemed like a long week. It is supposed to cool down here and rain this week and that will be a nice break actually. I like the sun and warm weather, but I don't like not being able to get away from it until 3 or 4am. Samuel had fun playing in the pool today, but unfortunately, in his true die hard style, did NOT want to leave and let us all know, LOUDLY! I was thinking the other day about his ever present die hard personality when he is passionate about something. He is not a quitter and he doesn't give up easily. We could say that same thing about him three years ago. I know where he got it from and I am very proud BUT he will have to learn to control it as he grows up.
Have a great week! Much love.
6/1/07
Things are going great here. There is not one day in which I do not take a moment to stop and think how lucky we are to be alive, well and together. There has not been one day that I have not been thankful for the restoration we are seeing happen daily. I still have flashbacks of all of this nightmare daily and they really remind me of how far Samuel has come. What a miracle! Last year at this time, things had only just begun to get awful and they were not very good to start. Two years ago, things sucked and were about to get worse. Three years ago, well, we just passed the anniversary of Samuel losing his colon, May 28, 2004 and I still remember it like yesterday. That was only the beginning of the nightmare. So where we are sitting today looks quite rosy! It has just been so SO nice, you simply would not understand unless you lived it. I keep thinking someday I might actually have a life again which doesn't revolve around this. Someday I might even have friends I see occasionally again too. We have lots of joy around here, with very little pain issues except when certain babies have a spat and decide to hit each other. Still working on that.....
Samuel has had near perfect days. He eats enough good food that we use his g-tube mainly for hydration and packed nutrition, or things he won't eat, and herbs. It is really exciting. I continue to marvel at this because three years is a long time to either refuse to eat or not be able to eat due to anatomical problems. Knowing that what he is eating is actually good for him and helping him to stay healthy is just icing on the cake. It has been challenging to me personally to be certain that the foods he eats with his mouth are just as good as what I could feed him through his tube. So, for the last two weeks that Mark has been working, we have been cooking...a lot. For as much time as Samuel has lost being able to play and be a little boy, I have lost just as much time being able to just be a mom, or be myself. He has a lot of catching up to do and so do I.
Mainly, we have spent the last two weeks adjusting to Mark being gone and trying to make a schedule for ourselves so that we get as much done in the day as possible and the big kids get the afternoons free to play. It has been weird and hard for my mind to adjust to not running to and fro multitasking what seems like fifty things. There is still a lot to do, but my mind not being busy trying to troubleshoot Samuel's gut leave a lot of room for other thoughts, plans and things I have put off for years now. It is truly strange to have such a huge weight lifted from my shoulders. Kaysha and Daniel have been great at helping with the chores here and find they have their days filled with things to do. Currently, we have a caterpillar, Tiger, who we are hoping will become a butterfly. He is quite cute and "dances" in his big mansion Kaysha made him.
So the kids are doing school several hours a day. It would actually be a shorter amount of time if they would figure out you get more done when you don't visit every time I leave the room. We took a month off after testing and we still haven't gotten their SAT results yet. They should really be here any day. They don't mind doing school when most kids are out because they don't have anything else more interesting to do anyway. And truly, up until now, we have had to rush rush rush to get through things and now we don't. I am looking into getting some new books for them as they finish old ones but will need to wait for Mark to bet another paycheck or two to balance the budge around here.
Mark has worked two weeks now at his new job. He brought his first paycheck home a day early, yesterday. That was great! He likes his co-workers, and the kids who live there as well and vice-versa His days go well and he is doing what he needs to be doing and I continue to see how God planned for him to work here. I am so proud of him and love him so much! Our days go smoothly here at home but everyone starts missing him around 2pm. Today, the kids are definitely showing signs of being stuck at home a little too long and it is a very good thing I have learned to have a lot of patience. Certain babies really pushed the limits here today.
I visited with Karla by phone last week and it was so good to reconnect with her. The company picnic is June 24 so we will be able to visit in person then. She is excited to see all the kids. She will always have a special place in my heart even though she claims to not understand why. She knows why. So I am excited about this event.
I canceled Samuel's GI appt. which was for next Friday since we have no transpo and seriously, we don't need it. I told the RN that it would be a social call at this point because Samuel is doing fine and we just DO NOT do well visits. I have had enough sick visits that if Samuel is well, you know it by our absence. They were happy for us and I will say it again, I really like this office staff just as much as the GI.
I talked to home health care today about Samuel's port and they cannot do a TPA to dissolve the clot at home so our choices are do either go to the ER, or be admitted on a weekend. I don't think so!!!!! So I ordered more supplies and Mark will try it again once more next week and if it still does not draw blood, my mom is going to take us to Tacoma sometime mid month. I am certain our Onc will want to see us and Samuel's labs. I will like to see Mary and I am sure my Mom will enjoy seeing her too.
And as for me, well, all of those lists I have made in my mind of things to do, make, look up, etc in the last three years. I am slowly working through them. Or maybe working through them the same way Samuel plays outside; like someone who has been deprived of life's simple pleasures. Mostly, I have been cooking, fermenting, and teaching the kids how to do the same. Over the past two weeks, we have made (from scratch) zucchini bread, amaranth biscotti, poppyseed yogurt cake, pizza, spinach parsley pasta with creamy chicken and garlic sauce, koji rice for Miso and amasake, yogurt, naturally yeasted sourdough, rejuvelac and I am sure I am forgetting something. I am going to make sake wine in the next week and start some Miso as well. Oh yeah, we started some pickles in dill and basil. Samuel has loved everything so far and was able to eat the homemade pizza crust without a problem. I suspect the yeast in storebought breads is causing some issues for him so am working on breads which have natural yeast. And it seems we have a lot of it in our air from all the kefir because my amasake was more like sake and had some alcohol content even though I wasn't going for any. I am probably going to make some essence bread if I can free up my crock pot. Anyway, it has been fun and seeing the kids participate and learn how to nourish their bodies better in the process is very gratifying. Mark and I have been so pleased to see all the kids eat dinner at night, including Samuel. It has been awesome. We are excited about making our own popsicles soon as well. Everyone loves them and for the amount we go through, we are going to start making them as soon as I get molds. Samuel is really getting to like fruits and trying and LIKING new things more and more. Thank you, Lord!! I just love this. He even likes veggies a bit more each day and eats broccoli raw. He is quite the Macho Burrito eater as well. He could live off those and doesn't pick all the onions, garlic and peppers out either. I am really really pleased if you cannot tell.
Simple pleasures are nothing to take for granted. Mark has been roasting coffee for us for a few months now and we have enjoyed that so much. We just got two new types of coffee to try. One is aYemen Ismaili for espresso and the other Ethiopian for the French Press so we are excited to spend the weekend sampling coffees and eating well. I just read someone's quote, "You can get through hard financial times easier than living without coffee." I have to wholeheartedly agree. Coffee was Mark and my one true enjoyment and thing we looked forward to when Samuel was in the hospital. We could hardly eat or enjoy much else but we both looked forward to espresso. And coffee remains today, our time of coming together to chat, plan and take a moment to sit down and enjoy each other's company. Roasting your own coffee, buying the beans green, means a better fresher and more cost efficient way of enjoying good coffee. We just bought fair trade organic for $2.10 a pound. We are always looking for ways to make the foods we eat fresher and more cost efficient anyway.
Mark also has been tending to our little garden which has produced lots of bell peppers, a few hot ones, and tomatoes. Strawberries are just about ready to harvest and summer corps have been started. The herb garden is lush. We also started a bottle of Vanilla Extract in January which will be ready by Christmas and the aroma of that is divine. I shared it with my Mom this afternoon over wonderful coffee and she found the aroma divine as well. I will probably find some other things to extract here soon. We don't have enough room for all these jars! All of these little projects are very satisfying simple pleasures that everyone enjoys.
So, I suppose my focus has changed from troubleshooting Samuel's gut to cooking and growing healthy foods for him to love. We have eliminated all the junk, problem foods about 99% of the time but I have realized this week that if I make the same food from scratch, it is easier for him to assimilate. So that is fine and I love having time to do this for our family. We also have started a family exercise plan since Mark and I are tired of being out of shape. And you should hear all the whining from Daniel. You would think he was dying. Everyone else is having fun. I hope to lose some weight and stop carrying all this physical baggage around.
The heat is still a big issue for Samuel. We have had a few 80-90* days. He just cannot hack it. Kefir is still working well for him but so many hot days in a row with no A/C has been hard on him. Sleeping is hard for him. It is really becoming the major problem in his life at the moment. This weekend we are getting him a ceiling fan for his room and that should help a lot. And a little pool. So I hope these things will help because he was SO grumpy today. Mark will have a few projects to work on this weekend for Samuel.
At any rate, things are going great here, we are all adjusting to life's changes and spending lots of time living. I am so thankful! We are happy. We are having fun. We cherish every single moment of it. We thank God. Much love.
5/28/07
Things are going well for everyone, especially Samuel. We did not do anything special this weekend except hand out at home together. That was nice. More later.....
5/22/07
I am finally feeling better, thank God! Mark is better and all the kids are fine. It is so nice to feel like doing something again! Lots of stuff to tell you.....
First off, today was Samuel's sedated dilation. I told the GI that I felt like he was bigger and that we probably need to be done with the dilations. She was happy but surprised. We also spoke with anesthesia about the overdosing we feel he got last time that sent him back as a demon possessed child and so this time things were a lot better. He was still agitated and stimuli sensitive for about an hour but not loud, vicious and rude to everyone. What a relief! Our GI came back to tell us that Samuel did fine and he is at a 15 today. Improvement! Finally! The last two times he has been a 13 and last time she thought even that was tight. It would seem things are heading in the right direction. Our GI is not ready to stop doing the dilations because she is "striving for perfection." I, however, am ready for this all to just behave so we can stop this cycle of sedations, dilations and Seattle trips. So, the compromise is to wait now 8 weeks and come back in. I really felt today like we did not even need this trip and honestly, I was hoping she would say he was a 17 and this would be the end of it. So, while the news is good, I am disgusted that we have been doing this cycle for a year now and still at it. His body on the insides is doing fantastic so hopefully the anus will figure it out and stop closing. We did talk to the GI about whether or not his body was able to make poop the size of a 17 to keep the anus open. Thought being that perhaps he won't be able to keep it open to a 17 based on the poop he makes currently, but possibly in a year, that could change. She thinks that if we break the cycle of scar tissue, it will stay at a 17 regardless of the size of his stool. It is a nice thought, but I am skeptical. I am sure there is a reason Dr. Levitt make him a 17. He left me saying he would give Samuel the anus size that was best for him, but I don't know how they are able to come up with that size or what it is based on. Mark consoles me saying that at least we did not have to dilate him from a 13-17 so there is less stress on the anus perhaps making it less apt to close right down in retaliation to the assault. I noted issues with his gut about three weeks to the day of the last dilation that resolved over the last week or so and I expect that it might have closed a bit then and opened up in the last week. So we wait and see. Things are good. But like the GI, I too strive for perfection and that would mean NOT going to Seattle every two months or so. That would mean his anus doing what it is supposed to do. We hope that in waiting now a little longer, that will be more of a definite answer as to what his body is doing.
I am sure I will feel better about this tomorrow. It is a victory to finally see improvement. The homeopath I have been using that helps dissolve scar tissue can take a few months to work if the tissue is old. This may or may not be a reason for improvement but interesting that this is the one major thing we have added for this purpose and we have seen a change. So, we will continue. God knows he has scar tissue everywhere so it has a lot of work to do. I do think the key is fewer more formed poops though to keep his anus the right size and that it may just be a matter fixed with time. It is just so hard to wait because it feels as if we have been doing this forever. And seriously, we have been dealing with this for half Samuel's life.
Other news to note. Samuel is 44 pounds, about 20kgs. Possibly his highest recorded weight. I think he actually weighed more last year but it was short lived and possibly just poop retention. We have all noticed his body filling out and he just seems bigger. Mark accessed his port last night for today, which was great. Everyone always appreciates that and certainly we are treated differently because of the level of care we are able to provide. I believe everyone recognized us in the OR today and Samuel walked in with one toy and out with three. They really love him and appreciate that he LIKES being there so much. In fact, he did not want to leave. Sadly, his port did not draw blood. Flushes fine. So we will need to think about what we want to do about it. The option is basically, go to Tacoma, see if they can get it working and if not, TPA the line to dissolve the clot and see if it will work. If not, then we will probably wait til it stops flushing and have it removed. Hopefully, we will be done with the dilations by that time.
We had a nice day out. The other kids went to Mark's parents for the night and after the dilation, we went back to See's for that celebratory box and to replace the one I bought my mom for Mother's day because, well, I ate it. Didn't want to give her stale two week old candy. My Mom got a new job in the last month, now forks for Homeland Security so has odd hours. Because I was sick this past few weeks, we did not want to risk exposure. She can NOT miss work. So I think we will get together this week for a See's extravaganza Samuel really likes the candy store! We also went to the book store to pick out some new books for the older kids and Samuel found a Dino book he loved too. Then lunch out in the area where Mark and I used to work. Seemed wrong to be there for some reason, like a funny time warp. Samuel was a little angel of course.
The other kids returned home this eve, were thrilled with their books and it is always cool to see them reunited because they are happy to be home and see each other. Mark and I enjoy that they get to spend a night with his parents and we enjoy them coming back home. It is all very nice.
In the last few days I have added kefir back to Samuel's diet in large amounts. That has changed the quality and quantity of his poop for the better. It also seems to hydrate him deeply. We rarely see those telltale black circles under his eyes that we have grown accustomed to over the last two years. Kefir really seems to rehydrate and rejuvenate him to the core. We took a break from it for quite some time simply because it's effects were not profound when his gut was always tied in knots for whatever reason. His body reacted to it is such a positive way that I think it is our answer to summer hydration issues. We have had some warm days here, albeit off and on, and I have already noticed Samuel having issues with hydration. I was hoping it was just a side effect of the horridness of last year's anal and GI issues but I now see it is something we will just have to deal with. I keep having visions of going outside and finding him collapsed due to dehydration as he plays SO hard and refuses to come in most of the time. I constantly run out to check on him so I dug out his backpack for his feeding tube pump and bag and he now wears that several times a day especially while outside playing. The weight of it can be an issue but I think he figured out that he feels better with the extra hydration. He is learning, slowly, that he needs more water and to be careful when being outside. With no A/C, a 75* day can be hot for him even in bed. It hasn't been overly warm since I discovered the kefir hydrates him so well so I am excited to test it when it warms up again. Of course, he would NEVER actually drink it but no matter. We have a tube for that. He did eat garlic, with his mouth, this week. And that went fine. He said, "This tastes funny." I said, "It's good, eat it." And he did. He doesn't know it but his body LOVES garlic. I can see light at the end of the tunnel as far as Samuel learning how to take care of himself and Samuel learning what he can and cannot eat. Each day he understands more and asks about more things about his body. Unfortunately, he did ask when he was going to get better. I asked what he meant thinking he was tired of having the cold, but he meant his butt. He wondered when it was going to stop hurting. There have still been days here and there that suck and his butt still hurts but for the most part, they are getting better and even on the sucky days, his body rights itself with very little intervention from me.
Mark started his new job Monday. Basically orientation. He called to tell me that I would never believe who is working there. I thought and said, "Karla." Yes! Karla, one of my favorite RN's from Tacoma is working in the same place as Mark. How cool is that? She recognized him though did not remember his name and then hugged him like a long lost family member when she realized who he was. Everyone there asked, "You know Mark?" Oh, yes, you could say she knows us. And I have to say that it makes me so proud to know that during our worst moments of life ever, when Samuel was most sick, most fragile and all we got was bad news after bad news, surgery after surgery, all of these people who knew us when, have only good things to say about the way we handled it all. Karla was the reason why I stayed sane for many of the early days. She was with us on some of the most awful days of our lives there. She was with me the last several days there before we transferred to Seattle. She was my friend and a welcome sight in a awful awful time. I am so thrilled that she will be a part of our lives again. I haven't spoken to her in about two years or so. I guess Mark's employer does company picnics and holiday parties for employees and families so I look forward to seeing Karla. Now, I am certain that Mark is where he needs to me if they were smart enough to recruit Karla. One of Mark's co-workers spouse works at the bank which handed the money raised by the benefit auction a couple years back so she "knows" us. Mark's other co-worker has had some unfortunate luck and while he was there Monday, we do not know if or when he will return to work. It is sad and I don't know much about him to report it here. Just pray for Roy to come through and be just fine. Mark was really impressed with him and the whole establishment as a whole. Yeah!!!!! I am so excited for him. And the best news yet is that he will get his first paycheck June 1st. that will be SO cool. We are all looking forward to that.
As for us, here at home; we had a little pow wow Monday morning, the first day of the rest of our lives, or so it seemed. You have to understand that Mark going back to work is a HUGE change here. These kids love their dad and they miss him just like I do. So, I got the big kids together to let them know how their days are going to play out from now on. What their responsibilities are and chores are, and what time school is and when their free time is. They know what I expect and they really made me proud as they stepped up to the plate to help out around here. I look so forward to the switching of gears that will take place here as Mark transitions back to working full time and we transition to school, house and mom/kid stuff. There are so many things I have wanted to do with them that have been put off because of Samuel's complexity. It will be weird and I still feel like there is not enough time in the day to do everything I need to do, or want to do, but we will figure it out. I told the kids that 4pm is clean up the Big Room time because Daddy likes to come home to a clean entry room and Daniel commented that he remembered doing that before.......as in, three years ago. That was cool. Maybe it wasn't that long ago that life was "Normal/" At least not to them. I cleaned house Monday and enjoyed it. There was time. It was nice. I look forward to more nice fun easy days especially now that we all feel better.
That is about it. Things are good. God is in control and it could not be more evident. It feels great. We are thankful for each day we have with our family because we know all too well life can change in an instant. Much love.
5/16/07
Over the last week, Mark and I recovered from our colds only to get them again, and back with a vengeance. Anna and Samuel also had a few sick days but are better while Mark and I continue to suffer. Kaysha's is still lingering and Daniel never got it. It has been really frustrating to have had so many down days feeling completely miserable and worthless. I am thankful that Samuel continues to do well so that my attention can be on myself for the moment.
Samuel has had some food associated issues off and on over the last week. At least, it would seem that way. If it is not food issues, then it is anus closing up issues and if that is the case, it has been going on for two weeks roughly, which would be BAD. I have to say that I actually think his anus is open. Next Tuesday we go in for his dilation and that will be the six week mark from the last one. His anus looks open to me which would be different than what I have seen previously which has been it was really hard to find without prying and hurting him. I would be grand if this issue was resolved. If we find it is the same, then I think it will be time for a different plan. Overall, Samuel is doing great and I treat each day as a gift with him because we know all too well this could have ended quite differently.
Mother's Day was probably my most miserable day sickwise. Mark made a special effort to take me out Saturday to my favorite store ever, following the tradition of the women in my family.....See's Candy. Oh, yes! You know you have arrived when you shop in that store for yourself. A new one just opened here and the babies were even given candy upon entering and I thought that was SO cool. Hey, we don't get out much. So I got the traditional box and as Mark says, I will know how much they love me with each piece. While I did not enjoy feeling like crap on Mother's Day, I was so thankful to not have to spend it in the hospital as we did three years ago. For whatever reason, that day was vividly clear. And it was not pleasant in any way. Comparing to that, I could have been puking my guts out and it would have been heaven just because I was home and Samuel was not the one who was sick. I am thrilled to have such wonderful children and cannot wait to see what the next year has in store.
Well, Mark and I KILLED my box of candy...probably why I don't feel physically much better and now we must go back and get another celebratory box because Mark just got a job! Not just any job but possibly the job he has waited his whole life to get. Certainly the job we have waited our whole marriage for him to find. In one of my previous updates, I know I mentioned the job we found here which was just perfect for him: close to home, good pay and seemingly fallen out of the sky specifically for him. We thought they must have hired someone by now because he was the first one to bring back his completed application, which was about 10 pages, and that was weeks ago and we never heard a word. They called for an interview and he did that yesterday. We are praising God tonight because this was divinely planned for sure. This job is very similar to the one Mark had to pass up just after Samuel was diagnosed. And it comes at about the same time of year when he had to turn down the offer three years ago. It was incredibly hard to get work references now since it has been so long since Mark worked for a decent employer so we ended up filling up the gap with personal references. We used Mary and Tammy from our hospital in Tacoma since this particular job is for a medical house for children. We figured that if you don't get to know the deep dark truths about people when they are in their more disparaging moments, you are missing something. And they know us. Both gave glowing remarks about Mark and Mary told me this afternoon to tell Mark that she said really nice things about him and didn't even have to life....LOL. Well, Mark was interviewed by three people yesterday and was told today that they unanimously wanted him over all the other applicants and that was before checking references.. Mark said that while he was given the tour of the place, both interviewers who will end up being his boses, told him that this was a great fun job and they loved it. The administrator told him the same thing today and it just seems they are thrilled to get him and he is thrilled as well. Heck, we are thrilled. I am so happy for Mark that I can hardly stand it. I just about cried! And it seems like Mark will be primed to eventually be the top man there if everything works out. They said they hope he will be with them a very long time. I just don't know how many places I have been where the employees said that they loved their job and it was a great fun place to work. I cannot think of any so I am totally thrilled for Mark. There are so many benefits to this job for Mark, not to mention healthcare benefits for our entire family, which would be great to finally have again! I just want Mark to be happy, treated well and appreciated which is something that has been lacking in his jobs. I am just praying this job is exactly what Mark needs to fulfill that part of his life. It is hard to express in words the sacrifices we have made in the last three years to care for Samuel but suffice it to say that a guaranteed paycheck coming at a guaranteed time will be a huge relief for us all. I pray that this job is God telling us that it is okay to move on because He is restoring our lives each day. And He is. This job was handed to Mark by the Lord. I have no doubt about it. It will be an adjustment for us at home with him working full time and that does not come without consequences either but I am certain that if God made provision for Mark, He will take care of me and the children while we are home. There will be some sad days to come for them seeing their Dad leave daily starting next week and this will be a huge adjustment and step forward. Both in our lives and in our faith in God making right all the wrongs in our lives. Someone just sent me a note which ended "May the Lord overwhelm you with His loving care today." How many of you get notes like that from complete strangers on the exact day the Lord overwhelmed you with loving care? More signs and answers. I know we will get up tomorrow and have to pinch ourselves!
I was hoping to be able to write this all out more eloquently tonight but I just feel too awful. I know I will truly enjoy this news more as I feel better which I hope will be SOON. Some of my burdens are lifted and I feel to awful to enjoy it too much yet.
Bless you, Mary. It was so awesome to connect with you on a spiritual level today. Know you are loved and appreciated by our family. You have been instrumental in MY sanity for sure.
Restoration feels good! Praise God. More when I feel better. Much love.
5/5/07
Donna Seymour, thank you!!!!! Samuel received your gift last week and it was so special. Thank you for taking the time to have this book made and include everyone's name. I loved seeing "Pooper" in print. I write his name here as Samuel 99% of the time but he will always be Pooper in this house.
On that note, Pooper is doing great, see pics above. He has made beautiful poop today and oh aren't we all glad to hear that!!!!!! He is riding a bike. Needs a lot of practice because either he can pedal or steer, but not both together. He also says the seat hurts his butt. Mark and I tried out our bike this past weekend and the seat on it hurts our butts too. I think I need a grandma bike. Seriously, Samuel probably needs a bigger more cushy seat. After sitting on mine, I see how it could really bother him. We briefly went to the park and hope to still have our day trip. But, I spoke too soon and Kaysha got sick after all so now she is miserable. Ode to the power of teas though!
