Samuel's Updates

9/29/07

Labs today

WBC 29.9k

PLT 27k

HCT 23.6

ANC 1200

Blasts 70%

LDH 818

Phosphate 7.7

Briefly, today was better than yesterday and Samuel has improved a lot tonight overall. His acidosis is better but not out of the woods yet. He will get blood and platelets Monday assuming we can hold out through tomorrow. His LDH has skyrocketed and he spent parts of the day miserable in pain from the acid and electrolyte imbalance. We hope that the bolus of fluids tonight will help more by tomorrow. Samuel's body is still killing the blasts but it is also making them faster than they are being killed off.

Please pray Psalm 91 over Samuel.

Psalm 91

He who dwells in the shelter of the Most High

will rest in the shadow of the Almighty.

I will say of the LORD, "He is my refuge and my fortress,

my God, in whom I trust."

Surely he will save you from the fowler's snare

and from the deadly pestilence.

He will cover you with his feathers,

and under his wings you will find refuge;

his faithfulness will be your shield and rampart.

You will not fear the terror of night,

nor the arrow that flies by day,

nor the pestilence that stalks in the darkness,

nor the plague that destroys at midday.

A thousand may fall at your side,

ten thousand at your right hand,

but it will not come near you.

You will only observe with your eyes

and see the punishment of the wicked.

If you make the Most High your dwelling—

even the LORD, who is my refuge-

then no harm will befall you,

no disaster will come near your tent.

For he will command his angels concerning you

to guard you in all your ways;

they will lift you up in their hands,

so that you will not strike your foot against a stone.

You will tread upon the lion and the cobra;

you will trample the great lion and the serpent.

"Because he loves me," says the LORD, "I will rescue him;

I will protect him, for he acknowledges my name.

He will call upon me, and I will answer him;

I will be with him in trouble,

I will deliver him and honor him.

With long life will I satisfy him

and show him my salvation."

We need prayers for the diarrhea to stop, it is better today. We need prayers for strength and stamina. We need prayers and for this blast crisis to cease in the Name of Jesus right NOW. We give praise to God knowing He is our refuge and nothing it too difficult for Him. Samuel IS healed, let it manifest.

9/28/07

No labs today. Home health did not have time. Today has been an extremely difficult day. Probably one of the worst ones in awhile. Samuel has been miserable and the cramping and just plain misery are taking a toll. He has felt poorly all day, had to be carried most everywhere and the diarrhea is relentless in spite of all we are doing. Our Onc ordered bicarbonate to be added to his fluid drip for overnight to help with the acidosis. We started it early this afternoon and he has improved slightly in that he can now walk and does not act like we need to be in the hospital. I hope that a night of this will help change things and get him feeling better. There are way too many variables to deal with now. The infection, which seems to be under control and still healing, the cancer which is just thriving in the acidic condition even though his body is still removing it, he is also still producing it. Then the acidosis, which is life threatening in itself if not gotten under control. We are getting labs tomorrow and will see how things play out. Things with Samuel can turn around fast when the right treatment is received and I pray we are on the right track tonight. I am exhausted and trying to keep myself "well" under the circumstances. This is NOT quality of life in any way, shape or form. We ask God to either guide us to solutions immediately or end it. We cannot go on like this. My poor children have been upset all day and without the consolation of their mom since I have waited hand and foot on Samuel trying to help him feel better. Anna has literally been ignored. Mark's Mom took the big kids this afternoon which was good for them. They needed out of here. I was thrilled when Mark arrived home. Thrilled. Everything improved after that proving once again how much more bearable this is as a family unit. So, we are trying to get the diarrhea under control and hoping that the bicarbonate will get the acidosis under control so that Samuel can get relief. It has been a difficult day and I am just exhausted. Samuel is exhausted. Mark is exhausted. God's will is for us to be healed and live out the number of our days and do whatever His plan is for our lives. Samuel is not ready to live with Jesus. He wants to live. We hold on to the Word which says that Jesus died so that he should NOT be sick but healed, whole and living a abundant life. We claim this for Samuel now in the Name of Jesus. Evil spirits, we rebuke you now, get out of Samuel's body, he is a child of God. Please continue to pray for God's will to be done in our lives, that is LIFE and RESTORATION. Nothing less.

9/27/07

Labs today

WBC 31.5

ANC 1545

Blasts 61%

HCT 27

PLT 59k

Tons going on here. Samuel is having a hard week, now on IV fluids to help with the binge/purge cycle of blasts we have going on. Today things have seemed out of control and his blood has become very acidic allowing the blasts to thrive. His electrolytes are way off and he has had severe muscle cramps all day. We think we have a handle on the situation and will be getting labs again tomorrow to see if things have improved. Tumor lysis syndrome is becoming an issue because his body is killing blasts as fast as it is making them. This is NO life and we need intervention from God now. We covet your prayers at this moment. And note that Samuel STILL has an ANC which is truly a miracle right now and for that I give praise! The mountains have become enormous around us, the deck is surely stacked against us. And yet, we trust God to save Samuel's life because we know His will is to heal all who are willing to receive and God KNOWS we are willing, we have faith and we expect nothing less than this situation restored. Please pray for wisdom for us right now and that Samuel's body continue to hold on, fight and continue to make neutrophils when that alone should be impossible. With God, nothing is impossible. Pray for us with faith. The battle has become war on a new level.

9/24/07

Labs

WBC 32k

HCT 31.2

PLT 34k

ANC 1920

Blasts 51%

LDH 553

Phosphate 7.7

A prayer warrior of Samuel sent me this today. "Like my dad used to say when our family went through a horrifying experience: If Christ not be raised, I'm screwed!" If this does not sum it all up, I don't know what does. If we did not know we had Jesus with us right now, there would just be sorrow abounding. As my Mom always reminds me, we are NOT MOVED by what we see. We are only moved by our faith in God.

These labs are not the ones I was expecting however there are some good things. His HCT is holding steady. His PLT have not dropped more than expected. They are actually higher than our Onc expected them to be today. His ANC has doubled with the WBC almost triple. His phosphate is higher than it has ever been still indicating tumor lysis. His tummy is looking a lot better today and he has started to feel hungry again. We hope that the infection is under control and that his WBC's are now attacking themselves and starting the binge/purge cycle we went through a few months back. Samuel continues to feel great regardless of what the numbers say and we are thankful and give praise that the other cell lines are still holding. It is frustrating, however, to have to start all over again. We are tired. We wonder if this roller coaster will ever end. We sit on the porch, sip coffee and dream about having a simple normal life. We go back into the house and the nightmare just goes on. How does one plan for a future when you live like this?

My GI called me today to check in which was nice. I told her I was reminding myself every five minutes that labs are just a snapshot of that very second in Samuel's body. We do so much better just looking at how he is doing on the outside. The days we do not see labs are a relief actually because we just focus on him. Tomorrow we will go in early to get platelets just because we don't want to see them fall to the point of wasting red cells. Mark took his port out earlier and it did not bleed even one drop. Nothing. So his body is adapting well to the situation. We won't see labs again until Thursday which is fine by me. Seeing them too close together was not always accurate either based on past experience.

We praise God for his firm hand on our family and pray for His peace that passes understanding to once again come upon us. Please pray that Samuel's body rid itself of the infection and that the blasts turn into normal good useful cells. Samuel IS healed and we expect this to manifest in the natural. We loose all angels to guide our every step and fight against the demons who want Samuel dead. We bind all evil in the Name of Jesus. Samuel is a child of God and only God can save him. Praise God that He alone is our hope. Without Him, yes, we would be screwed. God hear our plea for mercy, peace and relief tonight. Amen.

9/23/07

As you can see by the pictures above, Samuel has been feeling great. He has played outside the last three days. And played hard. None of this five minute stuff and let's go in because he is already tired. He and Anna have been running all over the place. He has been driving Kaysha and Daniel nuts since he discovered the Nintendo 64. Yes, we got out money's worth out of that system. He enjoys watching one or the other play it, and can play Pokemon a little by himself.

We have had a great weekend. Probably one of the most productive in awhile. We managed to get a lot of things done that have either been forgotten about or just swept to the side because other things were more important. I even got some of my own work accomplished and felt like, "Oh yeah, so this is what I used to do in my spare time."

I love the weekends for many reasons. One, Mark is home and our family is together as a complete unit. Since Samuel's relapse, having Mark gone has been very difficult on us all. He has hard days waiting for news here, or not knowing what is going on. Or worse, I call him with bad news, or suspicions which usually turn out right and ruin his days. Things feel out of control when he is gone. Things feel at peace when he is home. Everyone is happier. That is most obvious. This weekend has been peaceful.

I love our weekend rituals. Brunch on one or both days. Mark makes great breakfasts. Everyone love it, including Samuel. It is a treat to have everyone sit at the table and we did that today. Coffee on the porch, a little simple togetherness for Mark and I. Something we can enjoy regardless of the situation. Coffee has really got us through a lot of horrible things. Mary keeps asking if I am eating. Since this started I have dropped over 15 pounds. Hey, I could use the loss, so not a big deal. But she worries. It is hard to eat when you are busy or if the day is difficult. I do worry a lot, but mainly about the unknowns. Like, having Samuel's complications get out of control as they did in 2004. That worries me a lot because things with him can turn on a dime. So I pray a lot and try to get beyond it or do things about it.

The antibiotic change has been good. It has taken three days on it to get to the point where Samuel wants to eat. I have been feeding him the whole time, but now he is also asking to eat so his tummy must be better. I figure that tomorrow should be an even better day yet. We got rid of the diarrhea for a few days but it is back tonight. By day four of the antibiotic we just changed back to, he was dumping dead cells like crazy and I wonder if this is the beginning of that again. In thinking back to Seattle and how his labs looked while there and after we left, it seems like his PLT recovered with the help of one of the abx and the red cells were recovering with the other. When one was changed to oral, the reds declined. When we stopped the IV, his PLT started dropping. I see no evidence of low platelets currently and his face and color look a bit better each day so I am expecting to see better labs all around tomorrow. Basing that of course, on how well Samuel is doing right now. His wound around the tube is about healed and the skin is peeling a bit. The bruising, however, remains unchanged. We suspect that the infection must lie there. We have talked about the abx and the blasts several times this weekend and it is my feeling that we cannot go off the abx until we see the bruising fade and the blasts gone. Our GI originally thought 3 weeks and it could very easily be that, or longer. I cannot believe how long we have had to deal with this now, and how hard it has been on his body overall. It will be so nice to see this healed and I hope that we don't have to wait til Christmas for that to happen.

Samuel was so happy while inpatient. It occurred to me that he hasn't been that happy in months. He was nice to all the RN's and MD's and even let visitors stop in without getting upset. Since he has screamed in so many caregivers faces as of late, this trip really stands out. We wonder if he has just dull pain that he has grown accustomed to and does not complain about it since it is always there. That is sad. I know he notices acute pain because his butt is back to hurting and he definitely lets you know that. A little bit of ibuprofen works wonders. I am so thankful we can use that again without issue. But even i look back at the hospital stay and think, "Wow, so that is Samuel when he feels good!" I want him to feel like that every day. And I am thankful that his body has the capacity to wait on us to figure out how to get it better.

This weekend has been extra special for me. A bit over three months ago, we found out Samuel relapsed. Something I never dreamed we would deal with. And he was given three months to live, at best, with no conventional treatment. We are now beyond that mark. Samuel is thriving regardless of what his labs show. When you are told your child has three months to live, you tend to savor each day more than you ever have before. You try to memorize every look, word, the feel of their hair, skin, the sound of their voice and the sound of their laughter. You hope that you will never have to pull these memories out of storage from your mind because they died. You take lots of pictures and videos. You try to make sure their every need is met and that they don't hurt. You try to give them everything they want that will make them happy even if it is for a little while because you don't want to regret it later. You hug them a little tighter at night. You listen to the sound of them breathing, their heart beating, their feet running, and their mouth talking. You take every hug and kiss you can get and then some. You savor everything and pray that these are not the last memories. You think about Christmas and pray they are still here for that. You watch your children play like angels and try not to imagine what it would be like if there were only three. You remind the kids to be nice and spend time with each other each day while trying not to scare them about the future. You pray and you NEVER give up on them. You do things you have never done before because you are doing something you pray will have a happy ending. The only other choice is death. We have come way to far for that to happen. Samuel deserves more than two days at the hospital feeling joy. Where does this roller coaster end? I know what God says about life and healing and my faith grows stronger each day in spite of the mountains we see around us. None of this has ever been easy but we continue to put one foot in front of the other and saver each day hoping and praying that Samuel's tomorrow's will always come. For now, we give praise for this day of peace and fun for all. God leads us forward and we praise Him for that. We thank you for your continued prayers. Praise God, Samuel IS healed. We will shout it out to the world until is manifests on paper. Praise God, Jesus is still alive and with us today.

9/21/07

Today's Labs

WBC 12k

Blasts 47%

HCT 31.2

PLT 53k

LDH 488

ANC 960

I am actually pretty happy with these counts given what the day has been like. Samuel woke up crabby and it was obvious he was going backwards again. I mulled it over with RN Kathy who also noticed he was not himself and told her that I think the abx switch made at the last minute in Tacoma before we left is incorrect. In 48 hours time, he has definitely went backwards. His temp was up to 98f, which for anyone else, is great, but for him, is starting to go up. I called the Onc immediately after her visit and asked if I could switch back on the abx and give it immediately. He agreed that this seemed the best idea at the time. He also noted that Samuel looked better on our discharge day than he had ever seen him look. Indeed, he was probably the happiest I have ever seen him on that day. Yesterday was okay, but today it is obvious that we do not have that boy anymore. So I gave the abx and he improved almost immediately. Add IV therapy to my list of things to do. Until this week, I have left the IV stuff to Mark but now I have that to do as well. Samuel's temp normalized after as well. I think the platelets dropping by more than expected is telling that we were not on the right abx as well. The switch for Samuel is actually better because one is every 24 hours and the other every 8. It was two abx every 8 hours. So hopefully by tomorrow we will see our boy feeling happier again and see these other counts going up, blasts going down. I think the blasts are also very telling of the abx change not being right.

I had a good talk with my Onc this morning. He seemed very optimistic today, which I appreciate very much. He feels that Samuel's ANC is enough given the situation right now and we are so lucky to have it! I praise God for that ANC still notching up. Samuel's "good" WBC is also good enough for the situation if the abx are correct. We would like to see the blasts turn into neutrophils soon obviously but will give praise for what we have today. Our Onc figured that if his PLT were 31k on Monday, that would be really good. If higher, that would be even better. I told him I like PLT above 250k and HCT about 35 and he said, "He'll get there." Now that is improvement. He also mentioned that he won't be around at the beginning of the week, our former Onc is on call. Hopefully, I don't have to call them at all, no offense to any of them. Just want a quiet uneventful weekend. I want Samuel to be happy and enjoy life as well as the other kids. Mark and I would like some time off the clock of watch, wait, worry, and wonder as well. I really need to get some work done but it is so difficult to switch gears sometimes.

Thank God for Kaysha. She keeps those babies entertained and busy all day long. All the kids are getting better from their colds and I am still well. I feel physically and emotionally better today which helps a lot. I actually expected Samuel's labs to look worse today given the symptoms I was seeing so it helps a lot to see them marginally better overall. He had some really funky chemistries from being in the hospital and dropping so many blasts so fast and these have all cleared up today so I am really happy to see that as well. Things are slowly going in the right direction but as Samuel says, it is SO HARD to be patient. We have so much to give praise for. Samuel HAS a decent good WBC, his HCT seems to be holding, he does NOT need PLT, hopefully he won't and he has an ANC. This certainly takes a lot of the sting out of blasts. Praise God for continuing to lead us forward and assembling our army of support behind us. Thank you for checking in on Samuel. He continues to fight. And as I tell the Onc team whenever we speak, he plans to live. Much love.

9/20/07

Today's Labs

WBC 11.9k

HCT 31.1

HGB 11.9

PLT 63k

LDH 492

Phosphate 6.2

ANC 952

Blasts 49%

Even though the blast count has crept up again, the ANC has also risen, platelets are holding remarkably well and so is the HCT and HGB so we are pleased with these labs. His body is doing something that technically, it should NOT be able to do, make blasts and mature neutrophils. For that we give praise! Seeing the ANC go up is a very positive sign. Overall, Samuel has had a great day and has been thrilled to be home with this siblings. Kaysha, Daniel and Anna all have colds to varying degrees. Samuel had a nasal quality about him from Monday on as well so they may all have the same thing. I just pray that Samuel's symptoms do not worsen with all the other things he has going on right now. Mark has also had a lingering cough to deal with. Knock on wood, I am the only one NOT sick. Hopefully that will continue because there is just way too much to keep up on. I am really tired today and took a short nap that wasn't overly restful so I will keep this short. I will be glad to go to bed tonight We will see labs again tomorrow, everyone is watching those platelets to be sure they don't fall too low. Our Onc will transfuse him if he gets to the 40's last I heard. Today is the 36 hour mark for the abx he is on. It was about the 4th day at Children's on these abx where we started to see Samuel's marrow recover and make reds and platelets well enough to declare remission. Course there were not any blasts involved at the time either. We know this will most likely be an up and down scenario just as it was a few months ago with the labs all over the place. His WBC not going up out of the normal range is also a very positive sign to us. Please continue to pray for Samuel's body to do all the things it needs to do to heal the infection and kill the blasts in the Name of Jesus, Samuel IS healed. Amen.

9/19/07

We are home.

What a whirlwind! And what an incredible God we serve! Praises for His guidance in the midst of this battle yet again.

Stepping backward. Monday, Samuel had a low grade fever and was just off. His tummy was bothering him all day and worse yet, I clogged the g-tube we had put in the week before and we could not get a replacement. All I could get through it was clears and he could not even tolerate much of that. We scrambled all day to get another RX for an oral abx which was not filled and delivered over the weekend. But by the time we got it, it was too late. His G-tube sunk so far into his body that it was obvious it was swelling and things were going downhill fast.

Monday's Labs.

PLT 91k

HCT 22

WBC 9.6k

ANC 960

52% blasts

LDH 474

Phosphate 6.9

This did not please us at all as you might imagine. We ended up paging our Onc to let him know we would be going to the ER for IV abx instead of oral. One of the things I did for Samuel when he relapsed in June was to give baking soda and vitamin C together for alkalinity and to kill microbes. I stopped after we started the cesium because it did not seem as though we needed this extra punch. I gave him this combo before we left to the ER. He was feeling better within an hour. It was incredible. Since that was one of the only things I got through his tube that day, I knew it was from that combo. By the time we arrived, he was back his usual happy self, pleased to be there.

In a matter of an hour, incredibly, they drew labs, did an abdominal x-ray and CT. Both scans showed nothing remarkable so no pus pocket to drain, abscess, etc. Just swelling. Lat's that night, Monday night were as follows.

WBC 12.5k

ANC 780

Blasts 60%

HCT 21

PLT 78k

And again, we were not pleased but still clung to the fact that his labs got whacked out the minute the infection took over and it came on with a vengeance. So Samuel received the new IV abx and immediately, his low grade temp disappeared and he felt even better. We arrived at 7:45pm and by 10:30pm we had a room. That is amazingly fast for those of you who don't know ER's well. We have not been inpatient in Tacoma since 2004 so I was not really certain I wanted to be given the memories we have from that era. But we had many of our familiar RN's and MD's upon arriving and while I was alone with Samuel most of the time, I had a steady stream of friendly faces to my room both days. It was so nice and I was reminded of why we loved the caregivers here so much. RN's who had not seen Samuel in any condition other than comatose came in and hugged him and he had not a clue who they were. He has no memory of any of it, thank God.

So, I did not get much sleep Monday night as you might imagine. Mainly, my mind was trying to figure out what happened and what we needed to do. And I kept coming back to the same conclusion I have had the entire time. Get rid of the infection, get rid of the leukemia. Obviously the infection was WAY too much for his immune system to control and when it flared up, all he could make was blasts in response.

I learned something I did not know yesterday. Blasts are actually immature neutrophils. That explains why if you are making blasts, you generally are not making neutrophils. We were very concerned about that because we did not want to see the ANC die after just regaining it.

So, Tuesday, I got one of my Fav RN's Cathy which was a treat. Had her today too. I told them first thing that we needed to get Samuel a new G-tube. I brought a replacement from home for them to swap since they did not have our style tube there. It is bigger than the one we had so I wanted it done under sedation. First they thought they would try to unclog it but I told them to forget that, just change it because I perforated it trying to unclog it. And at 10am, 10am!!!!!!!!! They came to get him. We are used to having to wait all day. So, the sedation RN was fantastic and seemed very familiar. Samuel, however because very upset over it and forgot that he was going to be sleeping while they did it. The ICU MD doing sedation came to meet us, introduced himself and I reminded him we already knew each other. He was the MD on at Samuel's original dx in 2004. So, he remembered then and we talked a bit. Samuel was so upset that he actually walked out to the hall and put him out. I was able to go in, leave instructions for what I wanted done, and then left. Said a quick prayer for things to go well and sat in the waiting area.

A few minutes later my Onc came to meet me. The first thing he asked was if he could do a bone marrow while Samuel was asleep. I was quite shocked. I asked what the point was when we could see from the blood what was going on. He said he wanted to tell me what doing the bone marrow would mean to him, and then would ask what it would mean to me. To him, he would be able to find out if Samuel was making any good cells at all at that point. Or if they were all blast cells at this point, he just wanted to do as few interventions as possible and get us home. Or perhaps we could look at our treatment options again. What did it mean to me? Pain, suffering, and no good reasoning. It just did not matter. I did not need a bone marrow to destroy my hope at that point. So it did not happen. We explored treatment options a bit again but I really took this meeting as if they just did not hold out any hope for Samuel at that point. I reminded him that Samuel has been in worse places and that we might be down but we were not out. I expected a complete reversal to this. He mentioned that when I told him that two months ago, I was right, so he was going to hope I was right again. I told him my theory about Samuel's infection causing the leukemia to come back simply because it was too much for his immune system to handle. Get rid of the infection and get rid of the blasts. His theory was that the leukemia was too strong and that the infection was the result of the leukemia coming back. Minor theory difference on paper, but major difference IRL. We talked about Samuel's blasts vs. overall WBC. His WBC was not out of control, it could have been 25, 50, 100 by now, and it was 12. So some part of his immune system is trying to keep the leukemia in check. I reminded him that we started with a WBC of 50k and 84% blasts and got that in remission for a month. We have been in much worse places. Yes, this is a setback, but let's troubleshoot instead of fearing the worst. So I told him the things that reversed this cascade of events at Children's. Blood was next on my list of things to do right after the tube was done and I could feed him again. Samuel was returned to me right in the middle of the meeting which was good because it did not seem to be going well. I asked Mary who was present if he was trying to tell me that they are done with us, or they are ready to give up. She said they would never say that. I told her that they could think it all they wanted, but we are NOT giving up on Samuel. So things were left as such for the time being.

Samuel received blood and was able to be fed and immediately I could tell by his poop that he was killing cancer cells and detoxing. Meanwhile their Infectious Disease MD came by. We also know him quite well. Samuel thought I called him Dr. Shorts, so he immediately started calling him Dr. Underpants. This particular MD has a real dry sense of humor so I was waiting to see how that would play out. He laughed a bit. Then Samuel started poking his fat rolls with all his nearby toys and calling him Dr. Underpants and I really thought he would lose his patience, but he was fine. I brought the pictures of the wound from Children's, now a month old, and showed everyone including this MD. He asked what culture grew and I said it was diptheroids. He said, "That is a hell of a lot more than just diptheroids." No one I showed the picture to had ever seen anything that bad. We talked about abx and what was working, how I did not want many of them to take home, etc. We ended up coming home with the same ones we were on while inpatient at Children's. Guess they should not have changed them when we left. Hindsight is always 20/20. This MD came by today and as soon as he walked in the door, Samuel said, "Hey look, it is Dr. Underpants again." This time we both ROFL. I caught him in the hall and he mumbled under his breath, "Dr. Underpants is going home now." Everyone who heard Samuel called him this was ROFL.

When I pulled out the bedchair to sleep the first night, I saw the crevice on the top where I used to put Anna when she was 7 weeks old to sleep. I just looked at it and looked at it each night after I pulled it out. Hard to imagine she fit in there. Hard to imagine she stayed through all that night mare. I would wake up and just feel that space and imagine her being there. Remembering what her little body felt like and feeling sad that so much of her childhood seems like we missed out on enjoying. Especially the baby stage. Samuel and I called the kids last night. They stayed two nights with Mark's parents while we have been gone so Mark could work. Someone has to "finance" this lifestyle. Talking to them, especially Anna who sounds so big on the phone now, really hit home how much we have had to endure. How long this has taken. I called Mark later and said that most families I follow who have to go through ordeals such as ours eventually have a "normal" life when their child dies. Up until then, it is never normal. And when they die, it is not normal then either. Just free of illness. It is a tragic reality but what do you do? Pray for a favorable end result and this drama to stop.

So, after each abx infusion, Samuel started dumping dead cells. i can tell by the smell. If you have ever cleaned out a horse's hoof and you get down to the very bottom of the foot, it has a very distinct odor. That is what dead cancer smells like. I know it well. After Samuel received blood, this process of pooping out dead cells escalated. This is such acidic diarrhea. You can just tell how acidic cancer is by what it has done to Samuel's skin. It is completely broken down. Now that we are home, it is easier to deal with this aspect anyway. We asked for IV fluids to run all night last night simply to help detox. Samuel's ph through all this was never below 7.2 so I was pretty certain that these cells will not survive long, and it seems obvious now looking back at labs, and last Monday's blasts, that his body was reacting to the infection and the blasts were just his recovering marrow's attempt to fight. This seems more likely to me than a complete "relapse." We chose not to get labs yesterday. Our Onc came to visit again later in the day and could hardly believe the change in Samuel. He played with him for awhile and then asked me what I wanted to do treatment wise. We talked about a few different options earlier. I told him I wanted to wait because I still believed in my theory and it would seem his cells were now leaving his body.

We slept a lot better last night. Samuel talked in his sleep both nights. It was funny. We knew yesterday that we would come home tonight. They drew labs today and we thought he would need PLT. I was so pleased to see these today.

WBC 12.5

ANC 875

Blasts 42%

PLT 68k

HCT 33.6

Samuel has never gotten such a huge boost from a red cell transfusion so we all are in agreement that he is still making reds. And his platelets being only down 10k from Monday means he is also making PLT. He was dropping 25k a day over the weekend. His blasts are down a huge percentile, more than he has ever dropped in two days time. Usually they dropped a few percent a day. Samuel also had some very immature neutrophils, which are also good cells, NOT blasts in his smear and this was also a very positive sign to the Onc. He says he will be very interested to see what the next few days have in store. Samuel continues to dump dead cells. This is very toxic and hard on the body so we are working hard to support his body with fluids as it detoxes again. We talked about this "blast crisis" not setting us back much at all overall especially if it does not inhibit the red cells or platelets at this point. Not needing transfusions takes all the sting out of the blasts. So, as things stand, we will see labs tomorrow and Friday too. Samuel was literally bouncing off the walls today while there.

I asked Mary this afternoon if she had a talk with the Onc after I talked to her yesterday because he was certainly singing a different tune today. She told me that he said, "They saved his life. I am not certain that I could have, or anyone could have. Whatever they want to do, I will do." She hoped that would make me feel better. It does, however, I hate meetings when everyone feels as if the other shoe has dropped and you are out of options. That makes me want to climb onto the ceiling just to prove that I will not be backed into a corner and give up. Thankfully, I did not get that impression from them today. Overall, the trip in was good, just a huge rollercoaster. Seeing all the friendly faces was great. Having things go smoothiy was wonderful. Not having to fight the system to get released was fantastic too. I am afraid it is going to take me the rest of the week to get it all out of my system though. Overall, it was nice to be admitted and released quickly back home. Especially from there given the last time we stayed months and then transferred to Seattle. Being able to come home gives some closure on that accord.

Ending this with thanks for your prayers! Praises to God for lighting our path through a huge dark spot. It is hard to be strong when everyone around you feels like you are defeated, I will tell you that. Thankfully, we have the Holy Spirit's voice showing us what to do. Praise God for that. Unfortuanately all of my other children came home from Mark's parents with colds. Pray that Samuel NOT add this to his list of things for his body to do. I told Mark tonight, while his body may have a lot of things that are wrong right now, he has an incredibe coping mechanism inside it to fight and conquer. Praise God for giving us such a strong boy!

9/18/07

PM Update

Things are well under control tonight and I have been extremely pleased with how things have went here with only few exceptions. Looks like we will go home tomorrow with now 2 IV abx, to run every 8 hours. The fevers, the pain, the swelling, ALL GONE. He can eat again. As fast as it came on, it has also left. We did not see labs today but will tomorrow. Samuel received red blood today because his HCT dropped to 21. He may also need platelets tomorrow before we go. It is obvious tonight that his body is rapidly ridding itself of dead cancer cells again. It is not a pretty or fun process but it would seem that getting the infection in check and getting red blood has changed the terrain for the blasts and they seem to be dying. We will know more tomorrow for sure. Cannot wait to get home. Keep the prayers coming, Jesus is in control. This is God's battle not mine, so I will rest knowing HE has this in check.

AM Update

Samuel's cellulitis worsened rapidly yesterday and we ended up going to the ER. His stomach is swollen on the inside again, just as it was when this started. He had a slight fever which seems to have resolved with a new IV abx added. His labs are whacked out showing 50% blasts and ANC falling. We are in Tacoma not Seattle this time because of the blasts. Samuel continues to do great, in spite of his tummy. We all feel like this infection is just too much for his immune system to manage so please pray for us to fine the right treatment for this which will take care of it and get his tummy healing and working again. I feel certain that getting this under control will also right the leukemia.

We appreciate your prayers for us and our MD's here handling this. NO weapon formed against us shall prosper! Samuel is healed. We expect it to manifest.

Much love.

9/15/07

Yesterday was a busy day. We had a useful appointment with our GI and the plan is to go back on IV abx until the bruising is almost gone and have a CT done next week to determine if there is anything under the surface we are missing. She agreed that the site looks worse than it did two weeks ago. We discussed Samuel's labs from earlier this week, and then Thursday's labs and how they relate to a possible infection being there. It seems that us changing out the tube really irritated the inside again, possibly bringing forth whatever has been lurking under the surface similar to the way Anna hitting the tube many weeks ago sparked the major response we saw in his skin initially. It is not overly sore and he is certainly not being stopped by it in any way so for now, that is a good thing. We discussed the blasts from earlier in the week and my wondering if they are from this wound bleeding internally, etc. She, like I, did not veto this idea as the Onc did simply because the blood in there is a mix of old and new for sure. Certainly it was that set of labs that set us out looking for something else and the Holy Spirit telling me clearly it is the wound. And along with the LDH going up showing cellular damage, Samuel's phosphate has risen in the last ten days as well. It went from too low to too high. Every cell in the body has phosphate and the bulk of it is in the bones. I asked the Onc who stated with a growing child, it was not overly significant. Marrow recovering might also raise the levels as things are healing. I asked our GI if this was somehow related to the wound and she immediately went to look it up. What she found is quite thought provoking. High phosphate can be related to tumor lysis. Tumor cells have four times a much phosphate as normal cells and when they break apart, they spill into the bloodstream. So, with that in mind, we are back to wondering of this is a cancer spot as well as a possible infection. As I have stated previously, I think the two go hand in hand. Leukemia can certainly "hide". Tumor lysis is good because it means cancer cells are dying but again, we are not certain if this is what we are dealing with or not. There are many other variables such as red cells breaking apart can also lead to high phosphate levels. He has certainly been losing those. Phosphate is in every cell in the body and having tissues being broken down could also lead to higher values in the blood. Platelets also go to the site of infection or damaged and bleeding tissues and they are being spent. This is where I need an Onc's mind to weigh in but my Onc seems to not want to think outside the box currently making me wonder why I have one at all. At any rate, we continue to treat, watch and wait.

My Onc did state something useful via e-mail this week. "I think about Sam's therapy as slower/gentler treatment (than the sledgehammer approach of chemo) which also allows his immune system to combat the leukemia. " That certainly would line up to the immune response we are seeing both in his labs and in the area of the wound itself which has darkened and started to swell just a bit over the last few days. Certainly that is an immune response, but we wonder to what? Monday's labs should be yet another piece to the puzzle. It is exciting to know that Samuel's immune system is fighting it's own battles. Part of our treatment regimen is to strengthen the immune system to handle whatever residual cells may turn up, so if there really were blasts on Monday, his body handled them the way it should.

My GI, I know, will ponder this all weekend, as will I. She is the type of person to leave no stone unturned. She asked me for the info for Samuel's treatment for a friend. As she said, "If you know there is something else out there that works, it is your obligation as an MD to share it." I have shared this info with a lot of families thus far but I cannot make the choice for them. Most either don't have the mindset to take the leap of faith they need to do this, or still trust their MD's not to fail them. These are two things we learned very early, MD's will fail you and be willing to try non-conventional things in the name of cure. I know of one other family now on our protocol and their MD is solidly backing them up. PTL for them because they are very fortunate to have an Onc willing to support something they have not been trained to do. I know for a fact that there just are not many Oncs out there like that. But the word is getting out! PTL for that too. I am thankful I have at least one MD on our ship who is willing to think outside the box and wants to save a life no matter if the treatment is conventional or otherwise. We talked one day about how MD's are so into literature, clinical trials, stats, etc. It is just how they are trained. I told her I am only interested in saving my child's life and I could not care less about stats, clinical trials, etc. We handed our Onc clinic our plan and did not bother to ask their opinion. I already knew it anyway. I did not care. Still don't. If they want to help, great. If not, don't stand in the way. I call them, ask questions, pick their brains, and then research, draw conclusions based on what I know about Samuel's body, ask for God's direction and make my own choices. That is how it has been for months. One of the RN's in clinic told one of our home health RN's that "we do whatever we want." Well, they have nothing to offer us as a non toxic treatment. What other choice is there? Let him die? I think not. Many have asked who is overseeing our treatment and guiding us. Well, look up. Look at the face of the Lord. I have an Onc. I have a GI. I have a support person for the protocol who mainly works with adults, and I have God. That is it. It is an extraordinary amount of work on my part to do what I have to do to save Samuel's life and keep the household going and keep the kids schooling properly. It is worth every minute. I have spent 3 plus years now educating myself about cancer and alternative treatments, herbs, nutrition, etc. hoping I would not have to deal with relapse. I have watched children die for years now and hoped and prayed mine would not be one of them. No one wants to be in this position. I am just so thankful to God that with Him as my ally, my guide, we cannot fail. Nothing is impossible to those who believe. We believe in God's medicine. Your health, the health of your children, is in your own hands. No one will put more thought into it than you. Are you thinking about it? You should be.

We will see the GI again on Friday after the CT pending it gets scheduled. Please continue to praise God for His guidance and for Samuel's healing.

9/13/07

PM Update

I just spoke with the Onc about the labs and the wound. His impression from the chemistries is that we do have cellular breakdown. Samuel's LD has been going up for the last ten days now. Today it was 307. We have previously used this number as a tumor marker but it basically monitors large amounts of lactic acid which is given off by dead or damaged cells. It can be a useful tool for cancer but it is pretty generic in that it monitors all cells, not just cancer cells. Red cell formation also gives off lactic acid. We talked about hematomas and the healing process on a wound such as this and his thought was that new vessels are probably being formed to get to this and help heal it. This would spend lots of red cells. Also, platelets would be used to help the new vessels which would be easily damaged. We definitely see evidence of both. Plus there could still be some pus issues so we can explore that more tomorrow. He thought that Samuel's immune system was mounting a great response to the work that needs to be done at the wound site based on the high WBC and very nice ANC. Anyway, the conversation was informative and useful in understanding what is happening here.

We talked about the blasts on Monday. He said that perhaps the lab was overzealous in calling them blasts because they always want to be extremely careful not to miss them. Or, perhaps they just were slightly abnormal looking lymphs from a newly recovering marrow and they were called blasts because of that. According to the Onc, a person without leukemia should NEVER have blasts in the bloodstream. Not even if they have a sudden massive infection or injury. A person such as Samuel having marrow make abnormal cells as it is recovering from cancer would not, however, be unheard of.

Our Onc does agree with me about one thing. We won't see accurate labs until we see the wound heal fully. Only then will we know how everything stacks up. Until then, we praise God that Samuel's immune system, while fragile for sure, is working nonetheless.

Special thanks to RN Cindy for being so grounded and helpful to me today! It is really nice to say "blasts" to someone who does not immediately freak out, think the worst and dive out of our life boat.

Labs Update

WBC 12.4k

HGB 9.1

HCT 25.9

PLT 198k

ANC 3110

Blasts 0

Praise God! I have to believe that whomever looked at Samuel's differential on Monday was seeing things. NO blasts called today. His HCT and HGB actually went up slightly, but we will take it. Mark and I decided two days ago to restart one of the abx that we know helped with the cellulitis previously and based on the labs, I think it was a good choice. Samuel has to be bleeding somewhere because these platelets are going down and being spent. His WBC being up tells us his body is working hard trying to "fix" something. I definitely think we are on the right track. This is the first increase in HCT and HGB we have seen since leaving Children's three weeks ago. Praises to God for that and leading us where we need to go. Samuel is healed in the Name of Jesus. We claim it, it is DONE.

AM Update

I sent the pic I took of Samuel's tummy to my GI yesterday stating I think we still have a problem here. While the crater has healed a lot, the bruising on the side has not changed much and is still hardened, tender and sore. We are set to see her in clinic tomorrow. Our home health RN Cindy was here today. I really like her because she has a lot of experience. We had a long conversation about this wound today and she agrees with me, there is still something going on. I looked back at Samuel's labs and his HCT upon leaving the hospital three weeks ago was 33 and at last check, 25. That is too much loss when everything else is recovering to not signal something. The only place he could be bleeding is here. Her opinion of the blasts showing up was that his recovering marrow is trying to respond to this possible infection and is just working overtime. I told her about the theory of cancer starting in the cellular tissues and spreading and she agreed that based on that theory, we will not rectify the cancer without rectifying the wound first. She is going to fax me the labs tonight so I may have them in hand for our GI tomorrow. She also suggested we ask to get a CT of his tummy because she feels there is some swelling. This is something we have wondered why no one has ever done. Especially originally. Samuel is also complaining a little about his tummy hurting on the inside. It may be from swapping out the tube, or it might be the thing starting up again. Cindy thought some of the bruising on the outside is still fresh. And possibly his red cells are not being stimulated to produce more to make up the difference because of this problem, especially if there is another hematoma. So hopefully between today and tomorrow we can get to the bottom of this again. Mark noted that the wound is shiny again and a lot of the tissue looks like scar tissue to him now.

So we wait on labs for one piece of the puzzle. I sent my Onc a pic of this yesterday as well letting him know I think we still have issues going on here. He did not think it was a cancer spot however. He is more focused on the leukemia aspect of this and dealing with these two things as if they are separate issues and I believe they are the same. Fix one, it fixes the other. Time will tell. How many times do I have to ask this Onc clinic to treat him as a WHOLE person. Not just a leukemia patient. I am concentrating on this as a problem of his entire body. The Onc clinic sees blasts and immediately decide what we have done has failed (as they expected) of course. They forget that this is just ONE PIECE to the bigger puzzle of Samuel's body.

My GI does treat Samuel like a whole person when she deals with us and I just embrace that. Perhaps that is where Oncologists are missing the boat in the cure of cancer, they just treat the symptoms of cancer and ignore the fact that it HAD to start somewhere. Get to the core of the problem, change the environment and you get the cancer out. That is what I believe and intend to prove. May God continue to lead us with the sweet utterances of the Holy Spirit.

Samuel remains well, feeling just great. As Cindy said, he is not suppressed at all in spite of everything. He is devouring school, much like I did when I was young. There are not enough workbooks to sustain him because he is so eager to learn. He is quite brilliant and I just love how quickly he picks up on things. He also gets very disappointed if his work is not perfect. He will go far in this world. It is fun, amazing and exciting to watch. Kaysha must certainly have it in her to be a teacher for small children. It just comes naturally for her.

Praises to God for keeping us going and looking in the right directions for Samuel's cure.

9/11/07

PM Update

Well, today has been pretty awful but ended on a good note. I did not talk to my Onc at all. Today must have been his day off. At any rate, we already decided how to proceed with the wound and treatment so he can weigh in tomorrow though his opinion won't change our direction most likely.

Oh, I clogged Samuel's tube up so bad today that we ended up having to pull it out. After several hours of trying to unclog it, we had no other choice. He managed to eat well in between his regular tube feeds though so that was good. But for me, stressful. We did not get a spare when this temporary tube was placed and the way the connections work, you can flush through but cannot draw out. That is nice because stomach contents don't leak out, but you cannot unclog something big either. The size of this tube was also a lot smaller than we usually use and it has made feeding Samuel a real pain. We had 2 other tubes available thank GOD! Or this would not have been a good night at all. But both were a size bigger than the one we have. So, I pulled the tube out and it wanted to be stuck. Samuel was not happy at all. And we made it bleed out, which in light of what we believe is going on, is probably a good thing to get it draining out again. Mark was able to get the next size up tube in with little difficulty and now we can feed him properly again. And this larger tube doesn't seem to clog or bog down with the thick food.

So, now that we know sizing up is not a huge deal after all, we are going to cancel the tube replacement for next week in favor of letting this drain more and hopefully clear up all the issues period. Then Mark can just size up til we get back to our correct size tube. Thank God his work had some old ones laying around! It has not been a fun day at all but we both feel like getting the old one out and a new one in will be a good thing period for a variety of reasons. And now we can save ourselves a very early morning trip to Seattle for a five minute procedure. Amen to that for sure.

The babies' new school books arrived tonight and they were eager to get started. They did really well and the books are just so perfect for them. Samuel is doing great and Anna is not all that far behind him in getting the letters and their sounds. How cool will it be to see them both reading by the end of the school year. They are both so excited. Daniel got a few new books too but he is not quite as excited as the babies.

We are hoping for a quieter more "normal" day tomorrow. Labs Thursday......oh we cannot wait for those. We stand on the Word regardless of what we see on paper. Samuel IS healed. Jesus IS Lord. Praises for Samuel's complete healing and our family's restoration.

AM Update

I spent some time talking with the support person for our protocol this morning. After describing what I have done with the wound and DMSO, he is 99% certain that this wound is a cancer cluster based on the way it has responded to ph therapy. So we have a plan of poulticing it again to try to draw the cancer out. He is also pretty certain it is still bleeding on the inside based on the dropping red cell count and aiding the breeding going on inside it. I have sent my Onc a note this morning and am waiting his response. I think we will definitely ask for a transfusion if we do not see the red cells improve Thursday just to stop the low oxygenation process in it's tracks.

There is a ton of info on cancer starting inside tissues, in a wound or damaged area of tissue. It can breed and fester microbials there until it outgrows it's space and spreads to a weakened area of the body. I have wondered about the accident with Anna jumping on Samuel's tube, and then a few weeks later, the relapse. Then hindsight, looking back and knowing this has festered the whole time. Having it treated with abx stopping it and the cancer going into remission. By looking at the wound, it definitely gives the impression that it is healing. However, the bruising, funky skin, low red cells, and now blasts resurfacing makes this theory still very plausible. Treating the wound, and the invasion of microbes, bacteria, and cancer should stop the progression, at least in theory. The entire time we have treated Samuel's cancer, it has been with the thought that this was a microbial invasion and was treated as such. We may revisit abx for this JIC it helps the situation.

More as I know it. Praises to God for the Holy Spirit leading us on.

9/10/07

Today's Counts

WBC 8400

HCT 25.2

PLT 229k

Blasts 5%

ANC 2500

Did you read that right? Yes, they called blasts in Samuel's labs today. I really thought I was done writing blasts on the labs. How frustrating! We were not impressed at all, of course but remain firm in our Lord. We know that Satan comes to steal, kill and destroy every work of God and it just figures that when we are at a point of moving on, that evil would try to strike fear into our hears and make us turn away from God. Here is where most believers lose their faith and lose their healing. In a moment where everyone doubts God's work and God's plan. I do not doubt. I do not lose faith in our Miracle and our Restoration. Our Oncology team has "humored" us until Samuel's remission and then eagerly and joyfully jumped on the boat in uncharted waters with us. Today, I go the distinct impression that they were all jumping out of the boat to rush to the safety of shore before droning with us at sea. Well, look out for sharks. Jesus WALKED on water and we plan to as well.

So, here are the things I was told today by our Onc. One, whomever counted the differential might have erroneously called lymphs blasts knowing that Samuel had recently relapsed. Apparently that has happened before and they can look very similar. Also, marrow recovering can purge "sticky" blasts as it repairs itself. Our Onc warned me early on that we might still see blasts as the marrow recovers. He did not feel like 5% was something to be alarmed over . We all agree that it is just too early to tell because the marrow is still recovering and Samuel still has a lot of wound healing to do and I really suspect that this has a lot to do with what is going on in his body overall. The severity of the wound and infection was a very major thing.

Two other factors are also on my mind. Up until the last week or two, the wound has been able to drain outside his body. Now it is all sealed inside with lots of old blood still in it. The only place it can drain or reabsorb is inside his body, eventually into his blood. We know that blood inside is "old" so would be bound to have blasts in it since it was obviously festering for quite some time. Leads us back to wondering if this was in fact a cancer cluster trying to get out as the last of the blasts were purging. There is definitely still a fluid pocket under the skin that has blood in it. The other "new" thing is that I have started treating the wound with DMSO and several infused oils to help break up the scar tissue and repair the damaged skin. DMSO is known to break up scar tissue and make cells permeable. Since I just started doing this over the last few days, I really wonder if this is not the case. DMSO can travel anywhere in the body and crosses membranes and the blood brain barrier as well so could be also finding old blasts in the marrow and purging them as well. We don't know. As our Onc says, it is too soon to tell He actually thought this could be from the DMSO as well. If they continue to show up on labs though, his suggestion is to do a bone marrow to get a better answer as to where they are coming from. It is not shocking that there may be residual cells. We know that they can linger years. So, if they are there, I say purge them all now, get it over. I only want to do this once. I do not ever want to start from where we were 2.5 months ago. The Onc was not concerned by the low HCT / HGB stating that it is always last to come back. However, if these are blasts resurfacing from the marrow, I will ask for a transfusion just to get oxygenation back up to par since this just aids the cancer in manifesting.

At any rate, Samuel is just feeling great, better each day. His wound is better each day. The scab is at the surface now and starting to look more like skin rather than scab. We canceled the tube replacement for tomorrow because it is not quite ready. A tube on it would probably stop the healing and add to the bleeding and scabbing process. So another week on this and we hope that the scabbing is done and the new skin is completely formed and ready.

We had a nice weekend and even got some clean up done in the yard. That felt really good to get out there and do something we have needed to do for so long now. All the kids helped and the babies had fun doing it with us. The weekend was lovely. Even today was great until I got the lab results. We were certainly not expecting that and really it just seems wrong, like a mistake, or just the last of the last. At any rate, we have our arsenal of cancer killing supplies and we hold strong to the Word which says that Samuel is healed in the Name of Jesus. We praise God for His Miracles and for honoring His Word. No weapon formed against us shall prosper. We are not moved by what we see, but moved only by the Word of God. We march forward and we Praise God. We thank you for your continued prayers. This battle is definitely spiritual and needs all the prayers you can add. Much love.

9/8/07

We celebrated Daniel's 9th birthday today, even though his birthday is actually tomorrow. We took him to buy his present last night. He cried for 15 minutes because he was so happy about the gift. It is something he has wanted for over a year now. How deprived is that? Wanting something so much that you actually cry when you get it. I guess it was good we gave it to him privately without the extended family around. Mark and I talked last night about how we all have been deprived because of cancer and the complications Samuel has had from the original treatment protocol. It was sad and made me want to cry. I am certain those tears were about more than just a gift. Life for these kids has been hard. They have had to sacrifice a lot, go without a lot, and learn to make due with the very basics. What Daniel received from us should have been a Christmas gift but we did not feel like we wanted to wait. It was nice to see him find joy and enjoyment from this gift. Daniel is not the type of kid who wants everything he sees. He usually just wants one thing and he is happy and satisfied. While the "things" of life do not completely satisfy our spirits, they do make life more enjoyable, especially when you are young. I cannot think of any "thing" I would cry about receiving. The things I do, can do, may do, will do are so much more satisfying. I hope that I will pass this trait on to these kids in time.

He has grown up a lot and not in the ways I would have thought. Some parts of this journey, he has had the luxury of forgetting or not knowing about. Just yesterday he was playing a "bad guy" game with Samuel and said something to the effect that he would get his guts ripped out. I mentioned that Samuel had already had half his guts ripped out and he asked if he was born like that. He forgot all about the "air bag" and did not even seem to know why Samuel poops so much or still has so many accidents. It was odd. I thought he knew. I thought I explained all this before. Apparently not well enough. Daniel was only five at the time. He was Samuel's age now and I am certain that Samuel would not understand. Samuel still has not a clue what is missing from his body or anything that has transpired. Samuel does not know what cancer is and we don't even mention the word much. He knows he was very sick and he was told that if he did not fight, he would die. I asked him if he wanted to live with Jesus or with me. He said he would live with Jesus when he was an old man. That is about all he understands. Really that is all he needs to know. Now we tell them all that Samuel is getting better and they all understand that. Well except for Anna who is oblivious, what a great thing for her. Hopefully she will never have to remember any of this because it will be a distant memory. All the wrongs will have hopefully been righted. I am thankful that Samuel will never have any memory of being poisoned and hope that the suffering he endured because of it will never haunt his dreams. I am thankful our older kids have few memories of that time other than being separated from us. I am thankful that we are in a position where we will never have to make those kind of choices again.

We are moving forward. It is not easy. There are a lot of wrongs to be righted yet. Especially with our children. There are a lot of good times we missed out on, memories which were ruined with disaster. Cancer is certainly demonic. The disease can kill you and the lifestyle you have to lead because of it will keep you in bondage forever if it can. It drains everything you have. Family, friends, fun, finances, frame of mind all seem to drain out as more and more time passes. I have a father who has never said one word to me since Samuel's relapse. I have a sister who has never met Samuel or Anna or made any effort to be "sisterly" in the last several years. I have friends I never hear from anymore and most I don't care to. Fun? Everytime we start to know what fun is, something else happens which destroys it. I keep thinking we HAD three months of bliss. What if we get six months, a year, ten years or more? Whatever will I do with my time? Right now, it is hard to switch gears much beyond Samuel care. We have all these goals and we seem to be slapped down every time we think we are going to be close to them. It is hard to currently work on the house, yard, etc. because we are still reeling from the last two months. Finances? That is funny. Cancer will steal every last cent you have because you cannot put a price on a life. We press on and hope that someday this will all balance out once the drama of it all ends. Frame of mind? Is anyone REALLY sane. I always joke with the RN's who while inpatient ask if "I" need anything. Just mental help. You cannot possibly imagine the things "I" have had to do. Or for that matter, Mark has had to do, just to keep us all getting from one day to the next. September is supposed to be Childhood Cancer Awareness Month. If you are aware of someone near you who is living this life I just described, take them dinner on a clinic day. Bring them a bag of groceries just because. Maybe a gas card for the long drives. Knowing people care helps a lot because I can guarantee you they are aware of the people who are oblivious. Be thankful it is NOT you living their life by being thankful for your health, your children's health. This life is no picnic. It is the biggest balancing act I have ever had to manage for the longest amount of time.

And yet we here are SO blessed. Samuel is a miracle. He always has been. We have been fortunate enough to be shown what I firmly believe is God's plan for cancer which does not include poison. God showed us a way to save his life and we are SO blessed to have him with us. We spared Samuel a bone marrow transplant which was his only conventional option for "cure" even though the actual statistics for "cure" are staggering not to mention that it would have ruined his body. We spared him a miserable existence and death from that torture because of the Lord's plan for us and his life. For that, we will always be praising Him and this time in our lives will always feel surreal and supernatural! And now, after just two months, we are going to move on with our lives just the same way we were in the spring. I am blessed in that my children are gracious and appreciate things that are given to them by complete strangers. They don't expect it. A lovely lady just sent them all several new outfits for fall. And they tried them all on immediately and Daniel wore his clothes for two days........yes, he slept in them. My children get along and are friends most of the time. Yes, they fight, but not to the degree of any other family I see. They are respectful to us and I consider them my friends. They will probably be bomb proof as they grow up because of all the things they have had to witness and deal with on a daily basis. I am blessed because Mark and I could not be closer and our children are lucky to have parents who have stayed together through the unthinkable. We pride ourselves in being a good example to them as a married couple. Our family unit is a great team. We know how to enjoy a perfectly uneventful day. We know how to find comic relief in the crappy days. We still have our hopes and dreams intact even though they certainly have been crushed several times over. We still press on trusting God for complete restoration of all we have suffered and lost. We have some of the greatest caregivers ever right at this moment to help us along our path. We have some of the greatest "angels" on earth whom we will never meet yet, they keep us pressing on. We know there are multitudes of prayer warriors out there who know our family's name and plight and they pray for us every night. God has provided for us all this time and we look to Him now to stop this vicious cycle once and for all. I bind and rebuke every evil coming against us right here and now and I loose every angel and spirit to protect us and keep us on the path to restoration. This is OUR time. We are God's children. Where HE abides, there can be no devil who does not bow down and flee. Flee Satan. We are done with you in the Name of Jesus. Amen.

9/6/07

Today's Labs

WBC 9k

ANC 4500

HCT 25.4

PLT 297k

HGB 8.7

Apparently the HCT and HGB are just holding which I suppose is good. Really would like to see these improve but I guess this is just going to be an exercise in patience for me. WBC and ANC are super! Accounts for the great healing we are witnessing over Samuel's wound. RN Kathy was impressed with it again today because it is so much improved over last week. She feels the bruising is just going to take months to completely fade and feel normal again though so that might just look ugly for some time yet.

Things are great here and Samuel is doing fine enjoying everything he can get his hands on to do for fun. Life is grand and so supernatural. We are so blessed. There is not a day I haven't looked back over the last few months and marveled in our miracle. I cleaned off my sewing table yesterday and came across a lab sheet for Samuel from July when his WBC was 30k and blasts were 72%. I was so thankful right then and there to be beyond that. More than that, I know that what we are doing is leading us to "cure" not just "prolong" Samuel's life. Praises to God who holds us tightly, holds Samuel even tighter, and who has sent us angles all along the way to light our path. Thank you to each and every one who prays for us, and shares Samuel's miracle with others.

9/5/07

Things here are great. We started school yesterday. All four of them. Kaysha's mainly doing stuff with the babies but following the kindergarten Sonlight plan. I don't really care what they do at this point though because it is all gravy for them. They are just having fun. Samuel already knows all his letters so putting the sounds together and learning to write is his biggest thing. I learned early not to push the boys too much because each year they get easier to teach. Daniel did not really get with it until he was about 7 years old. Anna is only 3.5 years old so whatever she picks up is also icing on the cake of our lives right now. Kaysha and Daniel are reviewing stuff we stopped on in June while we took this little uninvited detour in our lives. They each got some new books and need a few more as do the babies. Yes, I call Anna and Samuel "the babies" and probably always will because of the age spread. We are just getting our feet wet and adjusting our lesson plans to fit into life right now. I continue to be impressed with the curriculum as a whole though knowing that we could have taken a full year off and they still would not be behind kids their ages. It is nice to think we should not have to take fifty breaks in schooling this upcoming year due to medical crisis. We are definitely looking forward to the future, not behind.

I received a note today from the Palliative Care MD who is leaving Tacoma for Florida I think.... She sent me a goodbye, keep in touch note. She did not know of Samuel's remission I gathered so I let her know that he was in remission and we planned to move on with our lives. Oh, and I burned the POLST form as well as the "My Wishes" form. Both of the planning for death forms. I am sad to see her leave especially considering we had no warning and also that she is yet another person who was there when all the bad stuff happened. She still remembers our room number back then. She sent me a note this eve saying she wants to help us in any way to reach our future goals.

I found out she was leaving the hospital a couple months ago and asked all our doctors if they too planned to move anytime soon. Seems they just up and leave and don't bother to tell their patients until the last minute. I hate that. We deserve continuity of care especially in our situation. As we found out in December, you go to a hospital that doesn't know you or what you have been through and they decide to step into the middle of your business. That kind of thing doesn't work out well for us because I tend to stop on toes when I think things are wrong or people are wrong. Hopefully hospital life will just not be an issue anymore other than the shunt thing we expect to have to deal with at some point.

Samuel feels great and I swear he looks a slight bit rosier, but I am a bit blind so might just be wishful thinking. I hope to see that HCT up tomorrow. That would be great to see a trend up. His wound is about half the size of the most recent picture above as far as the hole around the tube goes. We may be cutting it close thinking it will be healed by Tuesday enough for the other tube though. We shall see. The bruising still looks awful and the skin still feels weird. Not hard like it was originally, but not soft yet either. Like funky scar tissue. He doesn't need any more of that. It is not bugging him at all and hasn't for at least two weeks. I will be glad when it all goes away and is completely healed. His body still has a lot to do as far as healing all around goes though with the marrow still recovering and healing and this wound. Our RN Kathy comes out tomorrow and she hasn't seen it in a week so I will be interested in her opinion on how it is doing.

I love school days because I spend much more equal time with all the kids and I feel fulfilled at the days end.. Plus, we are able to make healthier food and snacks because I spend most of the school time in the kitchen. When I was last visiting with the Gi she asked if all the kids ate like we feed Samuel. No. That is impossible. However, the girls eat really well and try new things, make healthy snacks and exercise. Daniel, however, is another story. So, my goal with him is to help him clean up his diet and learn to eat properly. I actually think half his problem is that he doesn't chew properly so digestion is poor and he overeats. Boredom is also a big issue for him. It may also be a sadness issue for him. He has been really emotional through the relapse and then the wound Samuel had to endure. I am certain he has a lot of pent up emotions trying to work their way out. We are going to work really hard on this now that things have quieted down with Samuel. I feel that some of the best gifts we can give the children are a good education, knowledge on caring for their bodies God's way and most of all, a love and longing for God in their lives. That should set them up nicely to be great adults. We as their parents, try our best to be good examples. We give praise to God for our blessed lives tonight.

9/4/07

ANC is back.....3200!!!!!!!!!!!! Samuel's marrow is recovering well! PTL!

9/3/07

Today's Labs

WBC 7.5k

HCT 25.4

PLT 314k

HGB 8.7

We are thrilled to see Samuel's WBC, unstimulated is not only holding but going up in the the mid range of normal. We like this. We are also thrilled to see his platelets continue to go up. We did not get an ANC today but should know it tomorrow. His HCT did fall again but not as much as it did last week from Monday to Thursday so we hope it is coming up now, not going down. We will see this again on Thursday as I am certain our Onc is not ready for once a week labs as of yet. Perhaps we are not either until we see this last cell line stabilize in the normal range.

You would never know Samuel's red cells are low by his activity level. He has been difficult to slow down. In fact, he has actually made his tummy wound bleed a few times over the weekend due to rough-housing. Maybe that is why his HCT is down. He has to wear a net over it now to keep it secure. The wound is healing nicely in spite of the abuse he is now putting on it. It has scabbed over a bit now and is very small. Our plan with the GI is to reinsert his normal g-tube on 9/11 if he is healed well by then and if not, then on 9/18. Hopefully next week. This temporary tube is annoying in that it flops all over the place and pulls at the site now that he is the Super Pooper again.

Samuel's activity level reminds us of the times we would go to the Oncology Clinic in Seattle and we used to have to run him up and down the hall because we felt bad for all the kids in wheelchairs he was disturbing. Our Onc would look at his low counts and then look at him and be in shock. "Whatever you are doing, just keep doing it." Funny, he knew we were doing something but never asked what. Well, that is the Samuel we have in front of us currently. He is back to the Energizer Bunny. He plays hard, he naps hard. He is running, RUNNING, everywhere. It is so great to see. When he gets up in the night to use the toilet, he is happy, not hurting and sick and miserable. In the day when you talk to him, he is joyous, not a grump. He "looks" anemic for sure. But he doesn't act like it at all.

Our trip to the sea was great but one day is too short for my taste. We are trying to figure out how we can go somewhere and stay a few nights in the next few months. It would be cool to have both water and trails to explore. I think it won't be long and Samuel's stamina will be up again to where he won't have to be riding in a stroller on a longer walk. We long for that day when he can walk, keep up, and not tire out quickly. Really makes me wonder how long the leukemia was lurking before we discovered it.

Our GI had our appointment moved up an hour on Friday and it was mainly because she wanted to chat and have time. We talked about 40 minutes about the last two months and she said she was just so fascinated that she couldn't get enough. Mark was sitting in the car with the kids however and said we should just go to dinner one night alone so he did not have to wait on me with the kids. It was fun to talk with her about what we have done, our discoveries and the supernatural knowledge from God we have received. I shared with her my hopes and dreams for what we have learned and done and she said she would support whatever we do 100%. At any rate, again, she proves that she doesn't go home from a day's work and forget about her patients. She had a whole list of questions for me. This office as a whole has supported us 100% from the minute we walked in their door last fall so sitting down with the doctor and sharing what we have done and having her soak it all up at face value was nice. My Onc was humoring me for the past two months and so was the entire office until Samuel's marrow started to recover without cancer. Now, they are different as well. Home health has been refreshing with their support as well. We had an RN today whom I do not see often but enjoy a lot and she was quite interested in what we have been doing as well. And of course, everyone who knows Samuel is in remission without chemo are just thrilled for us. And as for us, it is surreal to stop and think about. It is supernatural! It is GOD. Jesus suffered and died for us to not bear the diseases of the earth and we intend to make sure we honor him by receiving His sacrifice of healing. Praise God always!

Samuel says he wants to learn to read so I think that I will spent this year just teaching him to read and write. His coloring and drawing skills have just exploded in the last two months. He really likes to color the velvet poster pictures and does about one a day then begs for more. He is also drawing free hand. We still cannot figure out if he is right or left handed. He draws or colors with one hand and then changes when it is tired. There does not seem to be much difference between the two either. So, I am unclear on how he will be writing. Maybe both handed? He is pretty unique! But anyway, we plan to slowly start school again tomorrow. I look forward to seeing Samuel start to read. Then he will be begging for dino books for sure. Fortunately, he loves all animals and we have a bounty of animal books here. It is all so exciting.

Praises for a lovely weekend. Praises that Jesus died so that we might have abundant life. I plan to work on that one for our family next. We have had enough suffering. Much love!

9/1/07

Just pictures tonight from our day trip. It was great. Samuel had a lot of fun and had great stamina in spite of his anemia. This trip was far better than the one we took early in the spring because he felt so much better overall. Last trip it was butt issues that stopped all the fun. We had NONE of that this time. Just a fun family day in the sun. Samuel got a little more sun than he probably needed and I wish this extra color he is sporting was really more red cells..... Time, time time. As Samuel said, "It is so hard to be patient." We know where he gets that from now don't we? Praises for a safe pain free trip.

8/31/07

Things are great. The GI was again impressed with Samuel's healing from the last week. She agrees that we are done with abx. Tomorrow we are going to my favorite place on earth. We cannot wait! Details from our visit later in the weekend. Many Praises!

8/30/07

Today's Labs

WBC 5.8k

HCT 26.8

PLT 285k

ANC 1914

The clinic was happy that Samuel's white count is holding as well as his ANC. Both in normal limits. He has been off G-CSF since Sunday. I would really like to see that HCT climb but they remind me, "One cell line at a time." They recover one at a time. Okay. Fine. You know me, I want it all NOW. We will see labs again Monday.

Samuel is done with his IV antibiotic today and we will be taking his port out for the long weekend. Yeah! He has had it in for weeks now it seems. So he will be getting a haircut and a shower later. Tomorrow we see our GI to determine the status of abx, we figure we are done at this point. And if the weather holds, we will spend Saturday at the beach. I am really looking forward to that. My body needs a break.

Our RN, Kathy thought he still has about 7-10 days of healing of his wound before we can have his regular G-tube reinserted. We hope it will be sooner. The one he has now has to be taped on since it just hangs loose. It is also quite a bit smaller than our old one, tubing wise, and clogs often.

I was thinking of time lines and time frames today. Seems everything has one. His bone marrow healing, his wound healing, etc. So interestingly enough, six months after I stopped nursing him, he was diagnosed with high risk leukemia. And six months after I changed his diet to heal his gut, he relapsed. Wonder if there is some correlation with how fast a body becomes acidic after being alkaline. Hmm. Food for thought.

I talked with my ND whom I haven't spoken with since early this year. He was amazed to hear everything we have done. He is leaving the US until mid September but is going to be calling me when he gets home. I think he was most amazed that Samuel's gut has healed enough that I am calling it normal. He suggested that his relapse probably happened because of all the turmoil we went through there as well. Thankfully he did not relapse then or he would have died. We could have never done then what we are doing now.

Samuel continues to feel great, better each day. He is having fun playing, painting and coloring. He and Anna have went outside several times today to swing or look for bugs. It is really nice to see my boy back. Continued praises for Restoration!

8/29/07

Samuel's temporary G-tube now has a stoma formed around it. Yesterday it looked like there was a small sheath forming but today there is definitely a hole that goes all the way to the surface, like it should be. Amazing! For as awful as this was, it is simply amazing to watch it heal. The skin is starting to fill in quickly and round off to normal looking skin. The wound care RN told me last week that it would take a normal person with a normal immune system about 2-3 weeks to have this severe a wound heal so I would say Samuel is making great strides to meeting that timeframe.

I have spent some time reflecting on our time spent inpatient. Several things stick out in my mind. Mainly, how well everything went overall. Another thing was the care we received from our GI. My main pet peeve about MD'S as a whole is them spending five minutes with you and giving orders based on that five minutes. Then they forget about you for the rest of the day. They usually don't even spend enough time with you to write useful good orders and this is where we have had many run ins with MD's. They write orders, I refuse them. This has never been an issue with our GI because our visits with her are usually 30 minute minimums to an hour or more. I never get the impression that she is in a rush to leave. I always get the impression that she cares about Samuel and doesn't want him to hurt or suffer any more. I also get the impression that she doesn't forget us when she walks out the door. When she called me after receiving the picture of Samuel's wound, she asked what time we would arrive since we had to go through the ER. I said 3pm. At 3pm our cell phone rang and it was her calling to see where we were. She was waiting for us. We were still 30 minutes away. So we talked for 15 minutes while in route making plans for what to do when we got there. Another thing that happened was that orders were written immediately to allow us to follow our home diet and supplements exactly as I had written and given them a copy of. I asked that this be done in our original conversation before we left the house. No one infringed on this nor did they infringe on our wound care or bathing practices once they were written into the chart. Funny that they had to be "ordered." I also asked that Oncology NOT be involved in Samuel's "cancer treatment" unless it was our former Onc. He was NOT attending but he came because our GI asked him to. That was especially nice because when you have had this many complications, seeing a person who was THERE and obviously remembers it all means you will have no contest in your current plans. I never saw the Onc who was on call.

Our GI spent so much face to face time with us that I was truly amazed. She took pictures of everything and I got copies of it all, which was nice. I am sure they will be great additions to the baby book someday. She ran everything by me and included me in every med decision which was also really nice. Certain things came up and were vetoed immediately by me including starting him on more than two antibiotics and an antifungal as well. They wanted to take a piece of dead skin off Samuel's wound and culture it for yeast. Neither one of us could figure out how that could be humanely done. After further talking about fungus and how it would spread, we knew he did not have it. More than two antibiotics was just asking for issues in my mind and all these decisions were respected. When things needed to be done with the wound, they watched as I did most of it, again nice. Usually they just take over and scoot you out of the way. She came in to check on Samuel many times throughout the day and give whatever the latest news was from Infectious Disease or the Onc team regarding antibiotics, etc. Another thing that was nice was after procedures or if an MD came through, the RN's would ask me what was said, done, etc. I guess they were not always in the loop but figured I was a reliable source. This is something which has also never happened unless I have an RN like Esther who "knows" me. None of these RN's knew us. At one point, our Gi asked me about starting him on an antacid just for the time his wound was healing and I was a bit leery about this one. My main issue with all of it is that I did not want to keep adding meds to what we were already doing. She asked, "If you are trying to alkalize him, wouldn't this only help?" LOL. So she was definitely thinning about our goals as well. Excess stomach acid issues are related to a person's ph being too acidic due to poor diet and is corrected with a more alkaline diet. Taking antacids only makes the overall acidic problem worse by masking it. You need stomach acid to not only digest your food but also to aid your immune system function. Our GI assured me that it would not compromise what we were doing because he was not going to be eating at the time it was used. Samuel has never had acid reflux because of his diet. As soon as we threw the hospital formula out three years ago, all those problems left we well. So I was not certain what we would be accomplishing with the antacid but figured that a few days would be okay. When he was allowed to eat, I asked for the antacid to stop and interestingly enough, he made no acid at all for the first day and his food came out the tube several hours later undigested.

It was really nice to be treated with respect because it was all a juggling act. We were very lucky that Samuel had no cancer in his blood when we got there or else it would have been a whole different ball game. When the surgery team showed up and acted like rude idiots, I mentioned it to her and it was taken care of immediately and thereafter, these people were nothing less than courteous when they came in. And of course, calling me from her home to check on Samuel was just frosting on the cake. Obviously this is a person who thinks about you after they leave. So, you can see how it would be a lot easier for me to hand the reins of Samuel's care over to her for a short period of time. It was really really nice to have that kind of trust. Of all the doctors we have had, she is the ONLY one I can say that about. The rest of the teams who managed our care were also great to us and other than the pain it always is to get out of there, the stay was as good as it could get.

One of the biggest impressions I have after this last admit is how well all different aspects of medicine can work together. We have taken several different styles of medicine: food, herbs, homeopathic, supplements, Chinese, etc. We have coupled that with the best aspects of allopathic medicine and were able to find a balance. Our GI was fundamental in this balance in her willingness to trust my instincts about what WE are doing for Samuel's cancer and immune system and how it would relate to her medicine. There are so many beautiful aspects to all these styles of medicine if you can just get someone on the same page with you. We were able to do this with our GI. We had several conversations about adding meds because everyone was so concerned about the "infection" becoming systemic. I was confident that this was NOT systemic because of all the systemic things we were doing. It probably would have been had we not done all we had done weeks before this manifested. It would be hard to explain this to someone who was not familiar with herbs, etc, but she just accepted my word and it was fine. I always reminded her that if this was going to be a "big deal" we would see more symptoms manifesting in Samuel. He was getting better with each day we were there. I told her that ever since the relapse we have looked at lab sheet after lab sheet showing cancer and then looked at our amazing boy who was full of nothing but life. Sometimes you just have to look at what is in front of you and base your decisions on that, not fear, not labs, not doubts. I know Samuel. I know what God can do. I told her, and I reminded our former Onc, he has been through MUCH worse and survived. Of course, everyone who looked at the wound initially thought it was the worst thing they ever saw. I told them they should have seen it two weeks before that.

Some of the really cool things were Samuel getting platelets even though he was nowhere near transfusion levels for that hospital. The "Mommy" in our GI just thought that 50k was not enough. And he got blood in much the same way the next day. I did not have to twist arms, just said how much it would help and bam, done. And magically, between these things and the G-CSF not only did he get better overnight but he started making his own cells again. We had our first real sign of remission the day before leaving thanks to our GI allowing his body to get a boost and have less of a stress level on the marrow. It was so awesome! Having transfusions done inpatient is so much easier than all the traveling and waiting we have done in the past two months as well. We are still trying to get used to NOT needing transfusions. I think it will sink in soon. I need to call the ladies in Tacoma Infusion to let them know that Samuel is NOT dead, he is in remission. They always wondered about us when we did not come in when they expected us to. Wonderful group of people!

Samuel looks pinker today but it could just be wishful thinking. Obviously his WBC's are still going to town based on the healing that occurred overnight. His last G-CSF was Sunday so tomorrow we expect to see labs which will be NOT stimulated by drugs. Should be interesting. Samuel continues to feel great and played outside quite a bit today. I can no longer see his ribs and hip bones but his arms and legs still look scrawny. They way he is eating, it won't be that way for long. He and Anna played a lot today and I can tell that she is thrilled that he will play (nice) with her again. It is just wonderful.

So I am ending this with praises! Praise God, we are moving on with our lives.

8/28/07

Today has been a lovely day for us to just hang out and do what we want. And we did. Samuel got to go to the park where he played for quite awhile before becoming tired. I have noticed that he is walking funny. He always has walked funny but we think that the current issues are from the cancer in the marrow and issues related to that. So, we hope to see that resolve over the next few months as well. If not, then we will probably have PT assess this further. He has always walked funny actually. Mainly because his butt was always sore so I don't know if it is just habit or what. Time will tell.

As you can see by the pic above, his tummy is healing well. No more black hole. It just looks like someone picked the scab off the wound. The rest is bruising and is fading slowly. It is not sore though he is supersensitive about who looks at it. He has also developed a huge aversion to tape so that makes doing dressing changes rough even though there is no tape. He thinks somehow there is tape and comes unglued.

Each day that passes I see more of a healthy Samuel and less of a sick boy. We keep doing double takes when he says or does things we haven't seen in awhile. One of the things I enjoy most is his laughter. Our newest thing is talking about him being a hundred year old man and what he will be doing then. He wants to be a Daddy and have baby boys. I told him by then, he will have grown up boys with baby boys. He somehow thinks he can be pregnant. He really likes babies.

He weighed 42.8 on my scale today. He started at 37.4 a week ago. Obviously his tummy and digestion were way off for the last month to allow such a loss to occur and it is nice to see him easily gain it back. He was looking terrible there for a little while. I like a boy with some meat on his bones, not really into anorexic looking kids.

Tomorrow should be another lovely day. Kids ask what we are going to do. Ha. Clean. A lot of things have slid by in the last two months, let me just say that. So we are going to try to get some major things done this week before starting school sometime next week or so. I am just loving being home, no hospital trips, no transfusions, no people coming out, no labs to wait on, nothing. Just simple life. We eat, we actually sleep too! Wow, it is nice. We praise God for another great day.

8/27/07

PM Update

Labs for today

WBC 17k

HCT 29

PLT 259k

ANC 13k

Well, we think we are done with the G-CSF now. Now I know why his port drew so well, it is full of white cells, all GOOD ones. I talked with the Onc this afternoon and he wants to do some flow studies on Samuel's blood next time we are in clinic. And he also mentioned that after some time elapses and it becomes obvious that Samuel's remission is durable, he wants to get our case published with our exact regimen so that others will know that there ARE other options than chemo to save your child's life. In his words today, "I did not expect this at all." It is and has always been my hope that the suffering Samuel has endured will not be in vain and that someday others will not have to suffer this fate in desperate hope for a cure. I have the poster child for why chemo is inhumane and why it does not work. Parents who feel the same way we do about chemo and radiation should be free to make a different choice for their child. You DO have a choice if your child relapses, but in most cases, not until then. I am proud to say that our hospital will support a decision not to use conventional treatment if the survival rates are staggering. They will not sick CPS on you. So hopefully, we can make a difference in this aspect. If we cannot humanely cure Samuel's cancer, then we will set his spirit free. Thankfully God is bigger than cancer and has given us all the tools we need to get ourselves healed. It just takes effort. It just takes faith. I believe what we have done will work for anyone. Apparently, our Onc is coming around to the same theory. Praise God!

No one is coming to the house for the next two days. Praise God for that too! We will see labs on Thursday and that should be a great day to get a baseline for what Samuel's marrow is doing. We will see our lovely GI Friday and hope to hit the beach for the day Saturday. We will rest, play, relax and take it all in. I hope that ten years from now Mark and I will look back at this time and know that we really did something great. I believe it will happen. Nothing is impossible with God. Nothing. We will be relentless in holding on to our miracles. We give him all the praise and glory! God is our healer, our Father and we will praise Him forever.

AM Update

It was just confirmed that Saturday's labs were not accurate. I found the chemistries from Saturday and they were so far off that it was obvious to all parties that all those values were less than they should have been. Today's lab draw should be very accurate since Samuel's port worked well. We gave G-CSF yesterday so I anticipate lots of WBC's. Also, apparently my Onc is calling me later today to ask if he can run some "tests" on Samuel's blood. Hmm. Appears they are interested in this remission after all if they want to further investigate and study it with flow tests. Should be an interesting conversation. The clinic is still just astonished by Samuel's counts. We like that. Samuel is doing great! Looking forward to the beach Saturday. More later.

8/26/07

Today's Labs

WBC 6.6k

ANC 2640

HCT 29.2

HGB 10.1

PLT 229k

We like these labs much better than yesterdays! Praises. Just look at those platelets recover! Praise God. Samuel is having a wonderful day. He took a bath and his wound did not even hurt at all. Things are just great! Praise, praise praise!

8/25/07

Samuel has had his best day so far today. He is more like himself, laughing, running around, playing, happy, joking and doing his usual things that we love to see. It brings me so much joy to see my boy restored.

Today's labs

WBC 9.5k with G-CSF

ANC 5510

HCT 25

HGB 8.7

PLT 166k

In the words of our Onc, "The road to marrow recovery is not going to be straight up." Yes, please pinch me. Samuel's marrow hasn't even had six days of recovery yet and I am unimpressed with the HCT and HGB. We are going to hold G-CSF for the next two days and see if his HCT will come back up. We think this is being crowded out by abnormal stimulation of neutrophils. I surely don't want Samuel to need a transfusion. He does look a lot more pale today but his energy is the highest we have seen thus far. I will be thankful to see this next week come and go so we can stop all the conventional meds and see how Samuel's marrow recovers when there are not external things going on. He has a lot of IV things going on right now.

His wound is looking better by the day. Our RN today was thrilled with the improvement. I think it is about healed enough for him to bathe with it. Possibly next week, it will not need to be dressed and covered either. Today he was 39.5 pounds. Pooping great, eating great. I spent the day making his foods for the week. Pretty much takes all day but I should not need to cook and mix until next weekend for the most part. Everytime I spend the day doing this, I just praise God for his food that restores our health and heals all illness. We are so blessed! It blesses me so much to do this for Samuel.

Other news I forgot to mention. The Neuro Team visited us last Tuesday right before we left. The CT was normal as I mentioned but the shunt series shows the line is pulling out of his heart. They figured we have six months and possibly less time if he has another growth spurt. We asked about removing it vs. revising it and that will require it to be externalized and monitored for several days. Either way it is a surgery and hospital stay. We do not think he needs it. We think the hydrocephalus was caused by steroids and once they wore off, his ventricles returned to normal size. We were told they would never be normal yet they are. So, if we can get this removed, we want to. If it ends up he does need it, well that answers that question for the remainder of his life. Because it is VA, it will have to be revised every few many years until he stops growing. This is why they stopped doing VA shunts in favor of VP because they require so little revision. Unfortunately, with the damage to Samuel's gut, we did not have a choice. As you know, we are not looking forward to this AT ALL so will put it off as long as we can. When our Neuro Surgeon does a revision, he pulls everything out and replaces it. So, it is not a simple thing. We hope he can just take it all out when the time comes and end this part of Samuel's journey.

To answer a question that has come up. No, we will not be doing a BMA or LP to determine remission status. These tests are worthless. If you don't believe that, just ask anyone who has gotten al ALL CLEAR only to relapse a month later. Clinical remission means that all signs of cancer are gone and the body functions normally. That is all we need to know. We know they can do these tests and draw three different samples on the same day and get three different results. We know Samuel has residual leukemia, and he might always have it. We will treat him accordingly. We might ask for an MRD in a year or two when we feel like we want to move on to maintenance therapy only to compare to the MRD we had 2/06 which showed 1-2% abnormal but unclassified cells. Obviously, those cells became leukemia. So, it will be a point of reference at some point down the road. Not now. His maintenance treatment will be lifelong until the Lord comes for him. There is a test which is considered more accurate for cancer status called AMAS and we will probably do that in a few years as well. What is important to us right now is that his body is functioning correctly and he has quality of life. Quality of life is being spared useless painful procedures that would not change our treatment plan at this time anyway. We can see all we need to with CBC's which will become fewer and farther between as soon as we and our Onc are ready.

We see labs again tomorrow. They are doing labs daily because he is on G-CSF. We do not want his ANC to fall below normal while this wound is healing. I do not believe it will once the wound is healed either. Our RN reminded me that we are pumping a lot in, and taking lots of blood out currently so this is bound to affect his CBC. Samuel's port continues to be troublesome. In fact, it has to be flushed 3-4 times before it decided to draw blood so there is some dilution going on there. At any rate, I would like to see the red cells improve tomorrow.

Today has been lovely. I just love being home, vs. the hospital. I finally unpacked. No rush. We are still trying to get caught up on all the things that need to be done here as well. But we are trying to rest a bit and savor things. I am ready for a break and it is hard to do a whole lot more than the bare minimum right now. It has been a long two months. I just want to sit around for the next two but we all know that is a laugh. Can I just press the Pause button for a few years and savor this victory? Can I just sit at the beach for weeks and enjoy the sights and sounds? Ha. We will start school in the next month as well. Try to get back to our old schedule which was working so well back in springtime. Samuel will probably do some school just because he is brilliant and will learn whatever I teach without me even trying hard to teach him. I really look forward to seeing what he will do as he grows up.

Some Samuel humor for you. Have I mentioned that Pooper is a clown? He gets it from his Dad. He thinks it is funny to pinch your nose closed and then tell you, "try to sniff." As if you can with your nose pinched closed. We could not do it as much with his nose tube though but now that it is gone, we play this a lot.

Special thanks to Joey S. and family for the lovely box we received today. The kids loved everything! I cannot wait for Samuel to snuggle with me in his new pj's. This boy LOVES his dinos.

Praises for all our blessings tonight. Prayers for red cells to remember they can come back anytime. Much love!

8/24/07

Today's labs

WBC 7k without G-CSF

ANC 2500

HCT 30

PLT 161k

Today has been a great day. We saw our GI this morning who was amazed and overjoyed by the amount of healing that has taken place. We talked a good 20-30 minutes about all kinds of stuff and it was very nice. The entire office was thrilled for us and so happy when I told them Samuel was now in remission. Samuel, however, was a grumpy butt to his wonderful GI so that was disappointing. I think that finally after all this time, he got the memo that going to the doctor is not all that fun. He is definitely tired of people wanting to see his tummy. He showed her and was out the door while we visited. We talked about about the previous hospital stay and Samuel's leukemia status, etc. She told me that some of the Residents asked her why she was not making us do chemo. She said, "First of all, I don't MAKE people do anything and secondly, there is more than one right way of doing things obviously." She told me she had a dream this past week that she got leukemia and could not find me anywhere. I guess she really put some thought into what we have been doing.

I brought her and the office a box of See's and made her a thank you card from Samuel. I handed it to her and prefaced it by saying that I am not a butt kisser and I have never brought an MD a gift. Ever. Midwife, yes, MD, no. Her RN whom I also adore told me I made her cry...again. Twice in a week. Guess I am on a roll. Well, we just think she is the best. We are so lucky. So, we will see here again next Friday to determine if we can stop the abx and when we can have his old style G reinserted. This will be done under sedation. I think he will be ready for this the first week of Sept based on the healing. This visit today was just really wonderful and we laughed a lot.

After that we headed to Tacoma to Oncology to get labs done and give home health a break. I was surprised at the atmosphere I walked into. It would seem that the whole staff just realized that Samuel IS in remission and boy are they thrilled. Everyone was calling him a miracle and just grinning like crazy. When they called me with labs, they said they were just beautiful. And then, no blasts. I told them we were done with that crap. They said they knew and it was still just unbelievable. I have said from the start of the relapse that I know what caused it and I know what will fix it. Everyone just nodded along like I was nuts. Well, God made it directly obvious to us what caused it and showed us what to do to fix it. Straight forward. Simple. Not fun, but we did it. Praise God for remission. We get his tummy healed and things will be just peachy!

So I chatted with the Onc yesterday about the labs as a whole. I looked back to three years ago and it seemed to take Samuel's marrow about two months to fully recover after it was free of leukemia. He felt that that was a good basis for recovery this time as well. Mainly the HCT and HGB were bugging me but he told me that after these have been low for so long, the body feels that a HCT of 30ish and HGB of 10ish is adequate after being deprived so long. Eventually, these will go up on their own. So, that makes sense. I told him that the treatment plan for Samuel does not change because remission is achieved. We continue on doing what we have been doing. The difference now is that his body is healing and we won't go to the hospital much. Everything now can be monitored at home. Because the treatment plan is basically ph therapy, or diet, this is simple. We will still monitor Samuel's labs twice a week until things normalize and then start to back off. Samuel will no longer need transfusions because he is making all good cells. Samuel should not get anything funky, like infections because cancer is not active. We will continue to be cautious of exposure and crowded areas as we always have been. Our Onc feels Samuel's neutrophils are all fully functional so after next week when we stop G-CSF, we shall see where things end up. Right now, we are doing every other day G-CSF. We will continue to treat for the next year following the Cesium/DMSO protocol and then switching to a different (less expensive) alternative protocol for the next year or so after that. He will always get prophylactic cesium for the rest of his life as well as a few other things involved in this protocol. Diet will always be key. I just got an e-mail from Mercola.com which said that diet can overcome bad genes. I agree fully. Samuel's body will always have some immune issues. Both because of leukemia and it's ability to hide out for years and also from chemo which also causes leukemia and other cancers. The DNA damage cannot be repaired. However, we know we can help his body to fight and kill cancer with diet and ph therapy. This is what we did starting in August of 2004 only we did not realize it was ph therapy at the time. We know this is what kept him in remission for so long. We also know that abandoning this cancer diet for a gut healing diet in January was what set us up for the relapse. While the food was the same, the cooking of the food and elimination of all raw foods allowed his body to become more acidic and gave the cancer ammo to come back. This transition was absolutely necessary to heal his gut and is the reason why he can do not only this treatment but tolerate the abx treatment as well. This transition gave him quality of life and prepared his body for the biggest fight it would have to put up. And in going through all this, my thoughts remain the same as they were two months ago. It is easier to keep cancer in remission with diet than to get it into remission with diet. We have done the hard part. We put out the fire. Now, we move on to the easy part, making sure it never happens again. We have already done this for years. It was just made really clear to us with the cancer recurrence how very important it was. Samuel's cancer treatment will be lifelong at this point.

So, we are still trying to take all this in as you might imagine. There is so much to savor. So many magical moments in the midst of the crisis. As time allows, I will share them. So many spiritual revelations which happened exactly when they needed to to reassure us to keep pressing on. So many words from God over the last three years which only prove how all our steps are ordered. So many things to praise about. I just walk all around praising God because we truly feel we got the "cheat codes" for cancer. Samuel has survived so many worse things than cancer anyway. I don't fear it, we just did what no man thought possible. Nothing is impossible with God! Nothing. Now, it is time to move on. We don't dwell on the past, we look to our future. God promised us Restoration. We intend to allow Him to keep that promise.

Something I have meant to post that I haven't had time to write out is some of the demonic manifestations we have seen during this crisis. There was one day where my Mom and I were praying over Samuel, laying hands on him and he got very mad. My Mom said right then that that was a demon in him speaking. How would Samuel know what we were doing? Why would he NOT want us to pray for him? So, we cast that demon out. His attitude improved. Later we were talking about the theory that cancer is really an infestation of Satan into a body. You cast Satan out and the cancer leaves. So, all the time Samuel had active cancer, we prayed for him, layed hands on him and he screamed and got angry. We cast the demon out and his attitude improved. And do you know that as soon as we stopped seeing blasts in his blood, Samuel started asking us to pray for him and lay hands on him and I haven't seen these episodes at all since. Demons are VERY reluctant to leave, I will tell you that and that is why his cancer treatment will be lifelong. This is the first time I have ever really noticed the spiritual realm in such a major way. Leading me to remind you that the battle is not ours but God's. Recognizing it for what it is and binding evil, loosing the power of the Name of Jesus is the first step in changing it. It did not happen overnight, but it did happen. We have seen and experienced some amazing things. The peace that passes understanding must be the most amazing of all.

So, about another week more of people coming here every day for labs, antibiotics, etc. and after that we think things will simmer down a lot and we can get back to the life we had in May or so. Samuel is improving daily and it will take some time for him to get all his energy back and completely heal. But he will. As soon as he feels up to it, we are taking a day trip to the beach to celebrate. Today, he took his nose tube out by himself so there is one less thing we have to deal with. He is getting to be such a big boy! I am so proud to be his mom. I am so lucky God blessed me with him. Now, we put our faith in God blessing our entire family with Joy and Restoration. We celebrate each day at home and praise, praise, praise God for His Wisdom, His Word and His Medicine.

Most of all, His Miracle, Samuel. Amen.

8/23/07

PM Update

Today's labs

WBC 7.9k

ANC 4100

HCT 30.3

PLT 144k

AM Update

Labs from last night.

WBC 7.4k without G-CSF

ANC 3200

HCT 30.5 down, now sure why.

PLT 135k up from 115k

Not putting blast count anymore because we are done with that. I am pleased to see Samuel's WBC going up and ANC holding well without stimulation. He did get G-CSF last night because we weren't sure though so this afternoon, I expect these will go up. Platelets are definitely making the port sticky. It did the same thing this morning. Just makes me smile. I hope we can keep this one going awhile. It will suck to have to get it replaced if it quits once things stabilize. I am not sure what is up with the HCT. His HGB also dropped a point. I think some of this is due to the way he is being fed right now and so there will definitely be issues there with poor absorption. The GJ is NOT ideal at all. I started using the G last night though and the difference in how he felt was amazing. He was already doing good anyway, but that was a huge boost. I do not think his wound is still bleeding on the inside. Today it looks even better so the healing going on is just going great. I also know that as the marrow recovers, it can sputter for awhile before kicking out the proper cells in good qualities. In fact, it should overproduce soon for awhile before normalizing. Samuel's platelets usually average 3-400k so we know that his marrow is still not working up to par. But of course, I like to see the numbers go up, not down so I watch, think, ask and do things to help it along.

Yesterday he weighed 37.4 on my scale. Today 39. So, as you can see, he is hungry and EATING a lot. That works for me. He looks way too thin. Anna is 36 pounds if that gives you a reference. Samuel's poop has been beautiful. NO diarrhea at all. All of these meds should cause it and we have had none. Praise God for that one! He is sleeping through the night which is probably the biggest deal of all. It is so obvious how miserable he was before we left and how much better he is now that we are home. Sleep makes everyone feel so much better. More later.

8/22/07

All is great! Samuel feels great and gains more energy by the minute. His wound looks better and I think that the crevice will actually heal before the bruising because that area is so large and severe. Doesn't seem to bug him in the least though. He was running today, rolling around on the ground, going up and down the stairs, eating food like he needs to gain all the weight back today and just having a fun time. Thank God G-CSF is IV at our hospital so no more yucky shots. Three was well enough. We will see labs, twice tomorrow since the lady came out this eve instead of this morning. Samuel's port is sticky tonight so we figure that the platelet brigade must have arrived. It has been just fantastic to watch him play and not hurt. He ended up coming home on one IV antibiotic, IV G-CSF and one oral antibiotic. They wanted to add two more but I refused. They actually do not know what bacteria they are treating since this was never systemic and topical bacteria they take with a grain of salt since everyone has bacteria on their skin. So, other than the good response he had with the first oral antibiotic and the second good response he had with the G-CSF, we don't know if there is an active infection or not at this point. At any rate, we are roped into this until the Friday after this coming. Samuel is doing well with no diarrhea thanks to the cement diet. Either that or as Mark says, his gut was healed even more than we thought and can handle this assault for the short term. Certainly we will do a detox when all antibiotic treatment is over. Tomorrow is another busy day and Friday is full of appointments. But all is great and it is so nice to be home and see Samuel come back to life again. Continued praises for everything!

8/21/7

2nd Update

We are home. I will say that was possibly the most difficult release I have had to work out. I think they would have been fine if we stayed there two weeks to be honest with you. Samuel has really perked up upon coming home. Rather than lay on the couch pitifully, he played for a few hours with the other kids before going to bed. It was so nice to see! He doesn't hurt at all it would seem. Things will be busy the next two weeks due to all the medicines and the extent of the wound so we figure that August is just a wash but plan to have a great September free of all this mess of the last two months. I cannot wait. Things are a bit crazy right now and we have a lot to do so I will update more after I sleep in my own bed and clean up the house a bit for all the people who will be coming and going over the next ten days. Thank you for your continued prayers. Remember to PRAISE!!!! MUCH Love.

1st Update

Without a shadow of a doubt, Samuel is in clinical remission. Please join us in giving praise! Today's labs speak for themselves.

WBC 6.9k up from 3.8k

ANC 3250 up from 1657

blasts 0

HCT 32.6 up from 31

PLT 115k up from 89k

We are just thrilled and full of goosebumps seeing this marrow recovery. While G-CSF stimulates the WBC, it does not have any effect on red blood and platelets. Seeing these both recover means that all signs of cancer have left the marrow. It does not mean there isn't still dormant leukemia there, but it does mean that all active cells are gone and the marrow is well on the way to being healed. If you do not believe in miracles, you should now. If you don't think there is a God who hears and answers prayer, you should now. If you think God's word has no use in this world, reconsider. This is the day we have prayed for. Today, exactly two months after Samuel's relapse, we have undeniable evidence of remission. God has done what all MD's told us was impossible. Praise, praise praise!!!!! Glory to God, we are nothing without Him! We give Him all the Glory and praise!

And Samuel's wound is remarkably better and though I had to negotiate strenuously to go home, we ARE leaving today! We will most likely meet our homecare team in Tacoma to get supplies so it will be a long trip and a long day of waiting. I cannot wait to see my family! I cannot wait to see my bathtub and my bed. Samuel cannot wait to get home as well. We will see our GI on Friday and their whole office is absolutely thrilled for us. The RN I usually speak to cannot wait to give me a hug!

Today is just an incredible day! Samuel is a survivor, a miracle and everyone who meets him and deals with him says he is just amazing! We are so proud.

Praise you Father! You take such good care of us. When all the world doubts, we BELIEVE! praise you for Your Word, Your Honor, Your Grace, and Your Mercy. Thank you for doing so much more for us than anyone could even imagine. We praise You alone for this miracle and will tell the world of your works so that they too will long to know you, and walk with you, and dwell with you. We know that this is Your plan. Please continue to order our steps, and guide us as we continue to walk a road less traveled. Bless all our supporters, both near and far. Bless our doctors who care for us, rejoice with us and suffer when our child suffers. Glory to you, Father. This IS the day the Lord has made. We will rejoice and we will be glad. Each day is a victory in the Father. We praise you and thank you and ask that your will be done on earth as it is in heaven. Amen!

8/20/07

We are still inpatient though Samuel is improving by the hour. I don't think we need to be here but the new MD doesn't know us very well and I can tell I am going to have issues possibly wish getting out of here sooner, like tomorrow. Samuel has needed no pain meds today at all and is feeling even better then yesterday. As you see from the pics above, we got out and about. he got another dose of G-CSF tonight and I hope to see the WBC rise more tomorrow. At some point, it usually explodes so we are waiting for that to happen. Since we had nothing better to do today, I asked for a Neuro Surgery Consult to check the shunt. Might as well while we are here. So we got to visit our old friends in CT and Samuel's ventricles remain normal. They also did a series of x-rays called a Shunt Series and as far as I know, that was fine but am waiting to hear from Neuro. All we want to know is if we can go another year or three without thinking much about it. Our caregivers here remain good to us so this has probably been the least stressful trip to date. I know that the staff are way more worried about the wound than we are. You have to look at the bigger picture. Samuel is doing great. Samuel's counts NOT stimulated by G-CSF are coming up. Samuel needs no pain meds which is still baffling everyone given the size of the wound. He was running today. He has tubes hanging out of every orifice and he isn't even phased. The x-ray people were hard pressed to see his shunt line through the maze of the NJ, the G and the port lines. It was funny actually. The main concern our new MD has is that they will release us too early and he wound will take a turn for the worse. I seriously doubt this will happen given the success we have had thus far and the fact that Samuel feels so much better. He hasn't been this good for weeks For the past two days, he hasn't even napped. For the past several weeks e has been taking 3-4 hour nap and waking up tired. So tomorrow we are going to push to go. He would come home with two IV antibiotics and wound care in addition to the many other things we already do but when you compare this to three years ago when we carried home a 30 pound two year old that was like a newborn, this will be simple. Unfortunately, this has taken a toll on Samuel's body and he has now lost 8 pounds total from relapse to now. He weighs 37 pounds today and looks way too thin.

Our lovely GI went home today but called me tonight to check on Samuel. How awesome is that? Mark says that is just the kind of person she is and I find it very refreshing. It is nice to be treated so well after spending so much time being treated so terribly. She wants to see Samuel in her office Friday. I seriously hope we will be home by then......

i will be glad to put this all behind us. Praises to God for healing our boy and amazing the MD's with His power. Praises for good staff and good reports that DO line up with God's word. Prayers for this wound to do an amazing overnight turnaround so we can go home! Much love.

Update archived here.

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