Samuel's Updates

1/9/06

The results are in and they are not definitive one way or the other. Our new Onc cautiously told me that the bone marrow is showing about 1% abnormal cells. These cells did take up dye, but do not have leukemia markers. There could be several reasons for this. One, they are just immature cells in a marrow that has had a lot of chemo that is trying to recover. Two, they could be leukemia cells that have not declared themselves at this time. At any rate, the only thing our Onc has to compare to is that if Samuel had just completed his first month of induction and had these questionable results, that would be very alarming. But as it stands now, no one knows quite what to make of it. And it is not know if MRD can detect dormant cells vs. active cells. So the news is not what we hoped for, but it is not necessarily bad either. The plan is to do another MRD next month to compare.

I told the Onc that I have thought all weekend about how I would respond if the news was less than stellar because as a physician, he is going to feel obligated to "do something." So I told him that I feel at this point, that Samuel's cancer, whether there is or there isn't, is OUR responsibility. We will be happy to listen to his opinions, but at this point, we will be taking responsibility for any and all treatments. This is my mission. It has been since we left Children's in July of 2004. I advised him that I would be making some calls today and exploring further options and he was agreeable to all of the above. Admittedly, he has no options for us but is willing to be on board with what we decide to pursue. He said he was trying to step outside the box and I told him that he picked a great case to do that with. I warned him that I like to test the limits always. But in a good way.

Mark and I are not overly concerned but by the same token, we are not thrilled either. The Onc was not either at this point. If something declares itself next month, then we go from there. When Samuel was diagnosed, my mom told me to believe what the Bible says, that Samuel is healed regardless of what the world says, regardless of what the reports say. I will continue to hold on to that. People live with cancer all the time. Our bodies take on caner every day. At this point, if Samuel's cells are malignant, then we have to just arm his immune system as best we can and let God handle it.

I still believe!

1/8/06

There is no news regarding the bone marrow. Nothing. No news is good news. They incubate the marrow to see if anything takes up the dye so it is my hope that they haven't seen anything and just give it more time. Only true leukemia cells take up dye. Maybe tomorrow we will hear back??

Samuel has been feeling off all this last week. His cold has lingered, he had one day with some puke and a few days of diarrhea and a really sore butt. Now his butt looks better, he is feeling better. I am not sure if any of this was because of the spinal chemo, but it has been nothing compared to the last one. It is just really annoying to see him feel poorly day after day. He got up from his nap today and complained of a tummy ache for several hours before getting over it. Now that is it 10:30pm and he is an "only child" he seems to be feeling quite better. Hmm.

Not much else to report, still believeing that the Good News is coming any day. Sending our love to you all!

1/4/06

Samuel's new year started out with him getting a cold. I thought I could hear it in his voice on the 31st and sure enough, by the first, he was quite miserable. He even told us he was sick, which is a new thing. He has never expressed to us that he was sick before. More like, "I hurt." But not, "I am so sick." He had some congestion and a cough that persists still but overall, it was not a big deal after the first night. He came to bed with us on the 31st and sounded pretty awful as far as his breathing went. I always listen and count when I suspect anything respiratory since the pneumonia in 04. We don't want to revisit that again, ever. That night, he sounded pretty yucky with very strange breathing patterns but it cleared up nicely in the daytime. No fevers or anything more alarming. But it gets a person thinking about where he got it, how he got it, is his immune system working okay??? List goes on and on.

So I called the clinic yesterday to see if they would still want to do sedation with cold symptoms. They are always very careful about that in Seattle and I did not want to make the trip in if it was going to be for nothing. They asked the usual stuff and were satisfied that we should come in and be evaluated (of course) anyway. Samuel's sleeping habits have resumed to what they were prior to cancer. Pretty much mine. He sleeps in in the morning and stays up late at night. Mark went to bed at 1am one night this week and found Samuel in his room, in bed, coloring a picture. He just does not get tired. When he got leukemia, suddenly he started sleeping like a "normal" person. I thought then how nice that was. Now we will know if something is wrong if he goes back to sleeping like a normal person. Last night was no exception, he was up until 11pm. He does have some "adult" privileges here it seems. No one else stays up that late as far as the kids go. He puts them to bed and then seems to wake up. Mark thinks he wants to be an only child because he certainly enjoys them all in bed and just him up.

His late night made today rough for getting up. He usually likes to go to the hospital (don't ask me why) and is ready to get up, but today he was not impressed at 6:15am to be woke up, put in the tub and dressed and out of here by 6:45am. We had a 7:30am appt and arrived just a few minutes after (a nice short drive) and went to a sedation room. A.D. immediately started throwing a fit and Samuel was irritated by all the kids wanting to lay in "his" bed. Mark parked and came in to take the kids out to eat and play while waiting for us. Samuel's port was accessed and he did super, even sat by himself. Labs were drawn and they asked for everything. A lot more than Seattle does. His labs look great!

WBC 7800

ANC 3400

HCT 35.4

PLT 456k

Everyone was pleased and it was decided to go forward with the spinal tap and MRD. The ostomy RN arrived early and hung out about an hour. It took forever for everyone to arrive and get everything in order but unlike Seattle, I was not ushered out when Samuel was put under. Sedation was done by one of our former ICU MD's. One Mark liked, I could take her or leave her. I sat with the Ostomy Rn while the spinal tap was done. The Onc does his own taps unlike in Seattle where the NP's do it. It took forever and I mean I was starting to wonder what was up. Then finally, three pokes later, he realized that the fluid was not dripping out because of the shunt. He asked if it was always slow but I told him I was not sure since we were never allowed to be present. They never seemed to take THIS long though. Hmm. They have to remove fluid first before adding fluid back so that they don't upset the CNS pressures. This still makes me nervous especially after all the shunt issues, CNS problems, etc. It was nice to be present for this so that I knew what conversation I needed to be having with God.

Our records still are not there either. Either the new Onc has not talked to our former one, or our former one has not sent anything. Our former Onc was always on the ball so I doubt that he has not sent reports that have been asked for. The RN's wanted lists of allergies and what meds he is getting now. It is SO wonderful to say NONE.

After the spinal tap was done, the ostomy RN was able to take a good look at his butt. Now Samuel was still sedated during this and he never moved while he was poked three times in the back. He never moved for the huge needed that took out bone marrow, but he DID flinch when his butt was touched. No one in the room could believe what they saw, or how he reacted to this being touched even under sedation. The ICU doc said how awful it was. The Onc was pretty speechless and the Ostomy RN concluded that he does not have yeast (no surprise to me) and other than doing what he have been doing, no one has any other suggestions. Like I am not used to hearing that. The Onc later told Mark that he was glad he was able to see this tissue and the visible damage. You just cannot explain it to someone, obviously. No one cringes much when I tell them, but they sure did upon seeing it. I think the new Onc totally gets where I am coming from. He agreed that Samuel just needs time to heal, nothing else, ever. Samuel's butt today is about a moderate break out. I have seen worse, and I have seen better.

His bone marrow took less than five minutes and I think the spinal tap took 15. A hematologist was there and put marrow on several slides, then took it away. Samuel slept quite awhile after the sedation medicine was stopped. I asked the Onc how long until we got the results back. He said a week at the longest but hoped to know something Friday. I told him that I was absolutely expecting them to find nothing. He said that he was too. We agreed that the next call I get from him will be for good news. He asked me somewhere in the conversation when Samuel's last oral chemo was. I think we were trying to figure out where we were in the LTM plan. I figured we are in month 5 of LTM. From June until now, we made it 5 cycles. I thought back to the last chemo I actually gave and told him it was July. He has not had any oral chemo, which was supposed to be daily, since then. And then I told him the kicker, which is that I never really faithfully gave it even then. Only about 3 or 7 days a week. Maybe he did talk to our former Onc since he was not too surprised. I guess I have never really thought about it much but Samuel has been pretty much off treatment for over 5 months now.

Things were left with the Onc as that we would wait for the MRD results and then meet again to discuss pros and cons. He told me that he was pretty sure our options have been exhausted at this point. I told him that that news did not break my heart in the least. I am beyond done. I know I have plenty of other options that are not poison and the freedom to use them. So we walked out with no return appt. One of the RN's I don't like came to catch us in the hallway to see if we had a return appt. I told her we did not and were not coming back until we talk to the Onc. It is absolutely liberating to be free of this system. I love it.

We left the clinic at 9:45am and got home by 10:30am. It was so nice to not have the whole day killed. Samuel did get spinal chemo, the ARA-C. He has had NO side effects. Nothing. In fact, after we had been home a little while, I went up to check on the kids and found them all dancing in Kaysha's room. Check the new video above. Apparently no one told Samuel he was supposed to be sore today. He has been a little happy boy running around like the usual energizer bunny. ARA-C is not supposed to have GI toxicity so we hope this holds true.

After being home awhile I was telling Mark that I felt certain that the Onc has already looked at the bone marrow slide. No one has looked at marrow for 18 months or so, so I had to think that the curiosity would kill the cat. No news was good news then. When the marrow was done and I sat there, I felt nothing but peace. No worry, no nothing. Just peace, the same peace I have felt since our decisions in December. Around 4pm the phone rang and as I looked at the caller ID I wondered if this was news already. It was the Onc who said he forgot whether or not he was supposed to call me today or not I told him he had said Friday. He said the MRD was not back yet and I then asked him if he had taken the opportunity to view a slide anyway. He laughed a bit and said that he "cheated" and looked and that the slide was clean. No leukemia. This is the same test they have done twice previously for Samuel, and the only ones we have to compare to. All in remission. So the test that can see one cell for every hundred, Samuel is in remission. Until the 90's, this was the only look that Onc's got. Well, to say the least, I am thrilled by that news and so was the Onc. I feel like it is a sign from God, an early one, of the news to follow. He was hoping to get the MRD back as soon as tomorrow afternoon. I wonder if someone put a rush on it. He probably heard no chemo for 5 months and just was on pins and needles. As I have said previously and claim still, I expect that MRD to be clean. I hope they send it back and ask if they sent the wrong patient's marrow because it is so clean. I just don't see any way that there could be leukemia present at this point. I pray that God show His continued miracles through Samuel. I pray that the restoration that I sense so strongly come to pass, THIS year. This week, this day. The MRD results are the type of thing that either make or break your year. I refuse to believe anything less than God has it in HIS hands and I won't lose sleep over it. If you have this kind of faith, if you look at Samuel and see a miracle, please pray for a good report for him. I believe.

I want to thank Rose S and family for the gift of swimming lessons for all of my children. I am just so humbled by your generosity. I hope we will see you at the pool. May God bless you and your family.

Much love!

12/31/05

As we head into the new year I find myself looking forward, not back. While we have a lot to be thankful for, and many happy memories from this past year, the majority of it has sucked and I will be most thankful to never revisit it. As the year comes to a close, I feel such a great appreciation to my own family within the walls of my home. It has never been more obvious than this year that everything my heart desires is right here around me, fulfilled by this family. Not by "things." I look forward to next year and feel in my spirit that it will be a year of restoration and joy for us. Last year did not feel like a new year to us, but rather the continuation of a really bad year. Now, I feel a sense of renewal and joy that we are not in limbo, our hard decisions have been made. The surgical whirlwind is over. Our lives are in OUR hands and more importantly, God's hands, not the hands of someone else I don't trust. I have already begun making plans for the new year by doing some cleaning out and packing up. My intent is to move away from here, away from the bad memories, away from a place way too small for us. Move to a place where our children can run as free as their spirits do. I am making plans to leave, and let me tell you, everyone knows it. It is time. I could sit here all year and wait for the other shoe to drop, but I refuse. I am all about letting all these children live their lives to the fullest each day. I am tired of looking back and being haunted by the past though I wonder if some part of me always will be. I am so trying to shed that skin and move forward, onward and upward.

Samuel's poor butt continues to plague him but he IS pooping less. So major bonus there. I don't make resolutions for new years but I do really pray that both these babies start pooping in the toilet very soon because I am SO SICK of poop. Samuel had his port flushed on Wed of this past week. Interestingly enough, the person who accessed it was the very same one who first accessed his port in 2004 when he got pneumonia, and then we never went home for months. It is funny how things come full circle. Now this very same person who was so worried about him then was commenting on how good he looks. Mary came in and stated that "he looks so good because he is not getting poisoned anymore." Hmm, she has been hanging around me too much to repeat that verbatim. I kind of wonder what Mary's stance on chemo is these days...... Well, they all thought Samuel did really well getting his port done. I guess they are used to kids that scream and kick, etc. He just visits and sits still. But to him, it is part of his body. We go back this Wed for his spinal tap, labs and the MRD. Still not even worried about the MRD. I expect only good news from that test.

We dug out some of our old family videos to watch over the holidays. They were from 2002-2003. Samuel went from a little baby who could not even crawl to walking in them. We haven't watched them in years and stopped taking videos in 2004 for obvious reasons. Well, these turned out to be some great lessons for Kaysha and Daniel as far as what being "unthankful" looks like. Especially for Daniel. I was very pleased that they "got it" by watching how they behaved a few years back. Watching them has really changed some behavior around here. Samuel liked watching "Pooper" on the videos. He knows it is him as a baby, but refers to him as if he is someone else. It was funny to watch what we did and hear what we said. There is a little snippet of Samuel at a year old brushing his teeth. I tell him that I am going to show him this when he is five because I figure at that point, he won't want to brush anymore. I commented to Mark that I am so glad we are watching these when he is alive, vs. had he died and these were our only recorded memories. So we dusted off the camcorder and took some shots of Christmas in which A.D. was a ham. Boy, do these two ever enjoy watching themselves. I have video of all the kids but A.D. around the age of one. Samuel wasn't as interested in watching video of just Kaysha and Daniel as he was of watching himself.

I want to thank Laurel P, and family as well as her friends who sent us a very special gift this week. I just don't know what to say! Thanks seems so small compared to the magnitude of what you all have done. All I can say is wow.

We thank each of you reading, praying and caring. We pray that the Lord bless you always and may you always know and feel His presence in your life. Thank you one and all for your part in Samuel's life. We appreciate your love! Happy New Year! Much love.

12/26/05

I hope that you are all enjoying the festivities of the holiday!

We spent Christmas Eve swapping beds between Kaysha and Samuel. When he came home from the hospital after his cancer diagnosis, we gave him the queen size bed so that someone could sleep with him and cuddle. When he came home after being hospitalized, all he could do was lay in bed, or be propped up in a bean bag. It was like this for months. So we made his bed as fun as possible and large enough for someone to be able to sleep with him if needed. Up until now, his room has consisted of his bed and a few dressers. Nothing else would fit. I wanted to give him a table and chairs for some of the new toys we knew he was getting for Christmas so we swapped. Kaysha was of course thrilled with the big bed and Samuel did not mind getting the smaller bed because it meant he could use his Blue's Clues bedding again. I had bought that bedding for him two Christmas's ago but he never really got to use it. So I had a huge grin on my face that entire day because to me, it felt like one more thing has been righted. Even if it is two years later. Suddenly I realized how much time he spends in his bed though. He plays in his bed all day. I think he just got used to being bedridden that he just thinks it is normal to hang out there. He wants all his toys in his bed and is having a hard time sitting at a table to play. I am sure he will get over it.

We went to Mark's parents on Christmas Eve to eat dinner and allow the kids to open one gift. Samuel opened up a little doodle board and was thrilled with it. He must have asked 60 times if he could keep it, if he could take it home, if he could have it. It was very sweet and I am sure it made Mark's parents happy to know the gift was well loved. I loved the fact that he was satisfied by that one gift and did not ask for more. Kaysha and Daniel needed to take a lesson on that front and we had a nice talk with them on the way home about being thankful. Needless to say, their behavior has improved significantly since.

We have all kind of been kicked down since the flu episode and as if that were not enough, I got an unexpected EARLY gift Christmas Eve night. And I say that sarcastically because it was AF. And here I thought I had another week off. Oh, no, it arrived with a vengeance so I have continued to not feel great. No huge dinner here either because we are all still trying to decide what we can safely eat. Thankfully, I am feeling better today.

I was and am very thankful to those who sent gifts to the kids, and to us. I did not wrap a thing. I did not have time or feel like it. What wasn't already wrapped, was layed out amongst the already wrapped gifts and no one even noticed. The kids slept in until 7am and we had to wake Samuel for Christmas morning. A.D. noticed her unwrapped baby the minute she hit the hall and came in running and screaming to grab it. Get out of her way! It was pretty cute! Before opening, I explained to the kids that the majority of the gifts were from people whom we do not know who wanted to help make sure they had gifts under the tree and a nice Christmas. It was fun in that we did not know what most of the gifts were either. They received wonderful gifts and I am just overwhelmed by the generosity shown by the families who adopted us. Thanks to Samuel's Christmas Angels who just went above and beyond. Thanks to Angel Sandi, Angel B and family, Paula, Kristen M. the family who adopted us through Candlelighters, Kerry in VA and I am sure I am forgetting someone. The clothing that was sent was so wonderful and I mean BEAUTIFUL and everyone seems to be playing dress up with them. Samuel got a sweater and matching hat which I just LOVE! I want to get one for A.D. The toys sent were perfect choices. Daniel is just thrilled with the fishing stuff he got, it was the biggest hit. Kaysha is loving the art stuff. A.D. likes everything that she got as well as anything she can steal from others. She got lots of new babies to love. Samuel did exactly what he did last year. Opened each present and savored it. No rip everything to shreds and trying to sort out the rubble. He wanted to play with each thing before going on to the next. He was simply adorable all day. Everyone was quite pleased. I enjoyed the chocolate! I don't know how to express my gratitude of if words can even cover it enough. Thank you all so much for helping out.

Our Christmas has been a bit spread out this year. Last year Samuel had no counts to we stayed home and did not allow anyone in. Today, we went to Mark's sister's for brunch and Christmas with them as well as his parents. Samuel got to play with his cousin who is the same age. They were born about three months apart and now the other boy is bigger. When I see him and the things he is doing, I wonder how different Samuel would be had he not gone through all he has. Samuel has not been to their house since the early months of his life so it was all new to him. He hid in a small room playing with the toys he had brought from home. I had to check on him several times to be sure he was okay. Finally, he joined everyone, but of course, did not eat. He was very sweet and started asking to leave after about two hours. He usually doesn't last about an hour at Mark's parents so it was nice to see him forget about time and play. He doesn't really go anywhere else so he isn't used to not being home. Maybe it is the fact that he doesn't have a bed to get in....hmm.

My Mom is coming to do Christmas tomorrow night. She spent Christmas in AZ with my sister. So one more day and Mark says we HAVE to take the tree down. I really like the tree up, it makes a nice night light. We also need to get Samuel's port cared for most likely tomorrow. Clean up the holiday decor and start thinking of spring cleaning and working on some of the projects I have been putting off for two years.

It was a wonderful weekend for the kids, I just wish I had felt better. Looking forward to a joyful week playing with all the toys, LOL! Much love.

12/23/05

We spent all of yesterday with the flu. Not how I pictured the days leading up to Christmas this year to be. Kaysha got sick the night of the 21st. I was hoping the stomachache I had that same night was a fluke, but turns out, it wasn't. Samuel spent that same night up until 2am with diarrhea and miserable. By the time I got him to bed, I was sick. Anna had seemed off that entire day as well, but never really had many symptoms other than whiny, but this is almost a normal occurrence for her so it was hard to tell. Samuel got up better yesterday and Kaysha was better. Daniel had woke up with a stomachache and was crying. I felt awful. Mark seemed fine and Samuel was thankfully better.

Poor Daniel was so afraid that he would never get better. He said, "Look at Pooper, he has been sick for almost two years now!" Then continued crying. He was miserable the entire day but lucky enough to miss out on puking, unlike I. But by midday, his butt was as sore as Samuel's. After spending the night very sick myself, I could not help but feel even more sorry for Samuel. I could see how quickly a person WITH a colon could get dehydrated and was glad we always have been really proactive when he has a major gut issue with fluids. For all the pain and suffering we had to endure for the day, it was nothing compared to what Samuel goes through. It was pretty sobering when you think of the big picture. For a major part of that time, he could not even cry, talk, anything. Daniel spent most of the day crying off and on and Mark and I commented again, that if he had been the one, he would have never survived. He would have given up and died. Well, I hope everyone is better today. I feel better, Anna is her usual self, Kaysha was fine last night. Mark is still fine and seems to have missed it altogether. Samuel was bouncing off the walls last night. Haven't seen Daniel yet today. Every time I get sick I always think about the fact that I don't have time for this right now.

Samuel's Onc appt was rescheduled for Jan 4th as the Onc is gone next week so we will have to make a trip in to flush the port in the meantime. I was thinking we could do it today, but that was before we got sick. So now it might wait until after Christmas. Seattle Oncology called to schedule Samuel's appt there, apparently our Onc there forgot to let the scheduler know we were not going there anymore. I told her that for Christmas she would never have to call me again. She laughed. I was relieved. I won't miss that drive, or that place.

We are just counting the days until Christmas. I swear that December is the most boring month for kids as they await new toys. Once again, it is Daniel who is the worst about waiting. Mark said this morning that he just wishes it was Christmas so they could get some new things and play. Thank you to Paula and Kerry for the packages that arrived this last week. Thanks also to Candlelighters for finding a family to adopt ours. Mary was right, we did not need to do anything because they handled everything. We got the kids each a gift from us, but there is going to be a lot from Santa and our Internet friends. They even sent stuff for Mark and I so we will have a surprise under our tree as well. Everything was wrapped so I have very little wrapping of my own to do which I am thankful for since time is running out fast. We haven't planned food or festivities for the day other than the traditional opening of gifts. I need to get in gear and clean up the colossal mess we made around her yesterday and figure out what we are going to do. Thankfully we did get the new element for the oven, last week.

My Christmas gift to myself has really been getting all the pictures from the past year developed and into books. It is one thing to see them on the update pages, and a lot of them are just on the disk from other happenings here. They look great and putting them into some sort of order and looking back on our year has been really fun. While a lot of the year sucked, we got to do some really cool things. Taking Samuel to the park with a lake and duckies a few times was a major highlight. Our trip to the Rainforest was awesome, short, but awesome. Seeing Bud is something we all still talk about. Going to the zoo. Samuel's first pool. We have so much to be thankful for! Our goal for next year is to move out of this house, to a place where some of these things can happen on a daily basis. Moving to this house seemed like a vacation for awhile because it was so different from where we came from. Moving to a place with land means we can have Bud, Samuel can have ducks, and other animals. We can have a garden, maybe a creek and the kids won't be cooped up in a house with no yard. If we do nothing else next year, we must do this.

I think the kids enjoyed getting their picture books made as much as I did. I made one for my Dad and mailed it. I made one for Delma's best friend on this earth, Roberta and sent it. She will enjoy seeing Delma's great grandchildren, as well as what we look like nowadays. I sill need to put books together for our families here as well as making myself a small one for my purse. I think after the holidays, I will take all pics from 2004 and do the same with them since they are just sitting in packs, not in books. Not as many great pictures from last year, just different. I have never done a thing with A.D.'s baby book so maybe I will try to do that. Sadly I have forgotten a lot. Thankfully I took the time to write some things especially for her and did her birth story here so that part is not lost. Her birth was a highlight of last year for sure. Kaysha likes to so scrapbooking so I am sure she would just love to put A.D.'s book together. A wonderful lady, Shandelle, made Samuel a scrapbook last year as well and I have never done a thing with it either. I always think I will do these projects at the hospital when I have stayed there for long periods in the past, but never can do anything like that. So I will have to make it and put in the pictures of his "rebirth" as well. Samuel's book is adorable. He has some other baby books that I never finished for him as well. Most of his babyhood is right here all over this website. A.D.'s babybook is the only one I have that is for homebirthed babies. Everyone elses are more traditional. Well, now that I have written all this down, I need to do them, while I am thinking of it and in the mood.

Merry Christmas! With all our love.

12/20/05

A glimpse of hope! Last night, Samuel went potty in the toilet. And later he tried to poop, but he missed and ended up pooping on the floor. He would have had better success if he had asked for help but apparently he wanted to do it alone and then show me after the fact. He sat on the toilet but did not use his little toilet seat so his butt fell in. When I came looking for him, he was trying to clean up the poop with a towel. It was a little sad but adorable too. He had decided earlier that evening to take ALL his clothes off and run around naked. Mark and I were looking at each other wondering where the first pile would end up. I kept reminding him that if he had to go, he needed to go in the toilet. He always says he understands, but never goes there with a diaper or clothes on. Last night he was very proud of himself and so were we. He is still sleeping this morning so I cannot wait to see what he will do today. It is my hope that he will realize that it hurts a lot less to do it in the toilet. His butt has been sore off and on in the last week. Some days there is just no rhyme or reason to it either. It is just awesome that he is trying!

The kids are getting excited for Christmas. Santa came by in his sleigh last night thanks to the fire station so we all ran out at 7:30pm to let the kids say hi. It was Samuel's first time to see Santa. Daniel was really excited. A.D. wanted to get away and Kaysha was nonchalant about the whole thing. I always think it is cool when they drive by each year. Worked out well for us this year as we were able to go out before they left.

Kaysha and Daniel picked out a gift for Samuel and A.D. and are very excited to see them receive. I was able to take some pictures over the weekend but had some unwilling participants to get in a pic all together. Daniel was the usual stick in the mud over picture taking. Samuel did not want to sit with Kaysha and Daniel, A.D. wanted to watch TV. Daniel would only make goofy faces or pout. Geez, why do I even bother? I had all my digital photos taken for the entire year developed to make little photo albums for the grandparents so we will be working on those in the next few days. We are also making ones for the kids with their zoo pictures, last years trip to the rainforest and whatever else they want. I imagine Samuel's book will be filled with ducks. I haven't been able to get any of them developed for the entire year so I am excited to finally be getting them.

Our next Oncology visit is the 28th for the spinal and MRD. I haven't spent much time worrying about the MRD because honestly, I don't see how there could possibly be anything on it. I hope and pray that once again, the doctors will get the results of the test and all be pleasantly surprised. I feel in my spirit that it is time for restoration here and I expect nothing less than the best outcome for this test. I think I have learned to let the spirit be my guide in the last year and to worry about things that continue to plague my thoughts and my gut as well. MRD does not. I could stay up all night worrying, but I refuse. My prayer remains for restoration, peace and joy, for all of us.

Thank you to Angel B. and Angel Sandi for the gifts that have arrived for Christmas. The kids just don't understand why they cannot open them now! Good thing it is less than a week away. Thanks also to Janna, Beth, Heidi, Keila, Jodi for your gifts. I am constantly humbled by your continued generosity. I pray that the Lord blesses you always.

Thanks to Leah for the note you sent me which blesses me even now. Thanks to Jan for the phone call and listening, wanting to help and offering your friendship. Thank you to both of you for showing me that our tragedy has made a difference. Thanks to Laurel and Ryan for wanting to help.

We wish you all our love, many blessings and thanks for your support, prayers and friendship. Merry Christmas!

12/15/05

Samuel's gut returned to normal yesterday, some nine days after the onset of issues. He is pretty happy now as you can see by the above video.

We had our meeting yesterday with the new Onc. As far as I could tell, he is not up to snuff with our case yet. I asked Mary if he was and she said that while they together have done a lot of talking, he does not have records yet, etc. She told me that the gist of their conversations were that they wanted to do whatever they could to support us in our decisions and to help Samuel feel better.

The first form we filled out is going to become part of our permanent record. The first thing was asking how we felt about treatment and what we felt our options were at this point. I let them know that at this point, I believe that no one can really help us. At least not in all aspects together. I told them that I wanted to find a doctor who would treat Samuel as a whole person. The Oncologists of late refer to him as a child with leukemia and want to only deal with that. I let them know that in my mind he HAD leukemia, but doesn't now and what we are dealing with now are the complications of chemo toxicity which are barring any further options for conventional treatment. We have had GI's only deal with the GI parts, we have had multiple surgeons fix things, several times. We have had intensivists try to just keep him alive despite all this other going on. We have had cardiologists try to make sure his heart was good. We have had Infectious Disease try to make sure we weren't spreading some germ to the planet. We have had PT, OT and ST try to get his body moving again. I had to hire a ND and feel that he has been of most use to me in the last year but even he is unable to treat the "whole person." It would seem an impossible task. When these people look at Samuel, I want them to see the whole picture, not just some aspect of it. When we started this, he was a whole person. He wasn't chopped up, gutted and scarred for life. Now, in our minds, we have fixed these problems to the best of our ability and restored his body to as whole as it is going to be and when we look at "treatment" options, we need to factor in his whole body.

Our new Onc was not really surprised with our answers to any of the questions given what we have been through.

The next question, while hard for many, was easy for us. What do we want to do should he relapse? Obviously, go home. No question. He was born at home and he will leave this world at home. Our only option medically at that point is transplant or death and we all agreed that transplant is just prolonging the inevitable and making it torture. I reminded that that that trainwreck of chemo toxicity complications was nothing I care to relive, ever.

After that, we filled out a quality of life questionnaire so they could get a handle on how Samuel was doing. This was more of an assessment of his mental attitude and emotions than physical. Is he happy? Is he sad? Is he nervous? Does he worry? Things like that. Rating them on a scale of 1-5 with one being never and five being always. When we finished that, Mary said she was quite pleased with his overall scores. Studies show that kids who have a lot of family support deal with this type of trauma a lot better than those who don't and that Samuel would be a textbook case for a study. We all remarked that Samuel is very well adjusted, mostly happy, never nervous, sometimes sad but that usually goes along with feeling rotten. As soon as he can get away from the pain, he is better. He does not worry about where will go or what will be done to him much anymore. Not like when we first started. But then he lost his voice and body and we had to become it. This may have made a lot of difference in the long run. We had to think for him and try to figure out what was wrong, if he was hurting, what he would want because he was unable to express anything. Kaysha recalls that time like this, "It seemed like he was dead, but he wasn't." Now, he does just fine, likes to go to the hospital, and just blindly trusts us to do what is right. I don't think he worries or gets nervous because we have never sent him off to a proceedure alone when he was awake. Everything that was bad happened with us at his side. He has witnessed many fighting matches between me and his doctors because they were all at the bedside. He knows we take care of him. He knows we will always be there for him. He has both of us. It obviously has made a difference.

The Onc had some new ideas of how to proceed. He suggested doing an MRD which is a bone marrow test that is able to look at more cells to find leukemia. I had asked for this to be done last year at Children's to help determine our risk category and maybe help choose a protocol, but it was just side stepped. After looking into it last night, I really wish we had had it done because there would be something to compare to. All bone marrow tests that Samuel has had previously are only able to see one cell for every hundred. The MRD is able to show one cell for every ten thousand so it gives a better look. But the reality is that a person has billions of cells so looking at ten thousand, while nice, is only a minute fraction of what is there. They could get a sample loaded with leukemia, or get a sample with none. Is it reflective of the entire cell population? Statistically, not really. But the recent studies do show that about 75% of cases have nothing show up in the MRD after induction. Of these cases, there is still about a 8% chance of relapse. The longer the remaining 25% have cells show up in MRD, the more chance of relapse. At one point, the chances soar to 75% chance of relapse if after 12 months of chemo, there are still cells. These studies do help clear the fog don't they? Our Onc wants to do MRD in the hopes that there will be less than 1% cells in the slide. If there are more than 1%, he doesn't feel comfortable doing "nothing" about it. He is still getting opinions from abroad and is going to comprise a list of options for us with their pros and cons. He knows most of them will be cons. If the MRD shows less than 1% and we choose not to do any of the treatment options he lines out for us, then he can accept that. If MRD shows more than 1% cells, than we will all want to come to the table and rethink our options and look at the cons list again. If at that time, we still feel we cannot do any treatment, the Onc said that while he may not agree with it, he will accept our decision.

I like the idea of MRD a lot but it is also scary. In my mind I wonder how could there be any cells? Really! We did less than one month of treatment and took six months off for about 15 surgeries, if not more. If this did not wake up residual dormant cells, what will? They had ample opportunity. At one point, he had over 60K of GOOD WBC's. Wouldn't that fleet have finished the job? Then we had two months of chemo and three months off. Then we did another three months of chemo and took four months off. Cells showing up in MRD now are the ones who have resisted chemo and become immune to it. This is why the risk of relapse increases the longer they show up. I know that there may be residual cells and there are dormant cells, but I don't know if MRD is showing active or dormant cells or both. Dormant cells are not killed by chemo. So they could just lie in wait for months or years. Resistant cells are also not killed by chemo. If we have MRD cells at this point, it is NOT good. The plan is to do this at the time of the next spinal tap which will be after Christmas. I am not sure how long it takes to get the results back. I believe when I asked last year, it was a week or longer. Maybe several. It begs the question, Do I want to know? Or would I rather live in blissful ignorance? Of course Mark says he will feel really good of there is nothing on MRD. But if something shows up? The statistics from studies give possible relapse outcomes for those still ON treatment. Not those who are not on treatment. So does the 75% chance escalate to 100% if you are not on treatment? I guess we will cross that bridge when and if we get to it. Until then, I will trust God that my instincts are right and we are DONE with leukemia.

Mary called their stoma RN into visit with us. I reminded her that Samuel no longer has a stoma but she came anyway and brought us another cream to try. Everything thus far, while may work, burns the crap out of him. Nice pun. Anyway, I guess she spoke with a pediatric burn specialist and got this cream. She wants us to let her know if it does not help, or if it burns, and she will call them again and see what else they can do. So far, it hasn't burned him, but his butt is on the better side. When we go in for sedation for the MRD and LP, the is going to come and get a look at his skin while he is not able to fight about it. We thought that was pretty nice of them to try to help with this again.

After the meeting, we tried to do a little shopping for Samuel and A.D. We had 30 minutes before we needed to get home to relieve Nana. I don't know if it was the meeting, MRD, or what but we could not find anything but crap. I wanted to get Samuel something really great, something he will love. But it became really clear trying to do what all these other shoppers were doing was not going to work. I looked at everyone's swelling carts of junk as we walked hand in hand with nothing but each other. It was so hard to think of spending money on frivolous stuff when we don't even know what next month will bring. Will we be able to make ends meet? Our gift to ourselves was getting all the monthly bils caught up so that we may end the year on a solid financial note.

What Samuel needs that is really great is not of this world. It is not material. If material things satisfied, we would not be out shopping for more of them. Kids would still be playing with last years toys instead of getting tired of them in a few days time. What Samuel needs is a break. We all need some burdens lifted off our shoulders. And what I would really like to get him, I cannot. The stuff we looked at was just crap I cannot even waste money on. I wish we were in a house with property. I would get him a duck, some chickens and hope that birds flew in to stay. I would give him heaven on earth. You really get what gifts your children are when you think that someday their spirit will leave their body and they will be gone. They will leave what in Samuel's case is a broken body into a place with nothing but joy. He will be made whole. It could happen at any moment. The little babies you thought were "yours" are not. They belong to God. Do I want to fill up his life with "stuff" or do I want to fill it with love, and experience and memories. Do I want to give him stuff he cannot take with him out of this world? Or do I want to give him love and joy which he can take. All of these things make up who he is today. Not the junk in his room. I am very proud of him and honored that I was chosen to be his mother. I need to find a gift for him which will somehow reflect that.

12/12/05

Slow is the road to GI recovery. Samuel is able to eat today. Yesterday was still a day with very little poop. While I enjoy the break, it sucks that it means things are not right. Last night things picked up and today slow again. But he feels a little better each day. It is obvious when things are going well for him as we wakes up happy and playful. We have had several days where he will wake up and stay in bed, or just hang out in his room and say, "I'm sad." I will be happy to be able to feed him normally again. Today he got a feed and then got fussy and told me his mouth hurt, which is now code for "I am going to puke." But we got through it without puking so far. Today marks a week of the GI issues being their worst so I imagine it should be improving daily from now on as it slowly seems to be. I am still trying to get used to the idea that this is the last time this happens due to chemo (we hope). It is time for Samuel to enjoy the holiday season.

Wednesday is our next Palative Care meeting with the new Onc. I hope he will be up to speed with our case by then. I am reminded of the first day we arrived to Children's and the Resident came in, greeted us and said he was going to go spend some time getting up to speed on Samuel, took his chart and left. He did not come back for three hours. It was then that we formulated a plan for how to help him. Three months of issues took three hours, then I imagine almost 20 months will take one full day of attention. He may not be ready for us.

12/10/05

Yesterday, Samuel's gut continued to go downhill. He was pretty angry all day because I would not let him eat, but just kept pushing clears instead. He cried about his sore butt which looks terrible and he was back to doing the butt scootching thing again trying to get away from the pain. Even though he is not pooping a lot, the poop that is coming out is just acid and mucus on an already red raw area. He said his tummy hurt all day as well but wanted to eat everything in sight. Finally last night things started to release and as he improved, he started feeling better. This morning things still are not back to normal, but it is a huge improvement over yesterday at this time. I will be glad when the effects of chemo are worn off and he can get back to normal, you know eating again and just dealing with the "normal" stuff associate with his gut. I hope that by tonight he can at least eat.

I disposed of all the chemo that is in my house. What a wonderful experience that was! Mark said he was sure it was a cleansing experience for me. Yesterday was not bittersweet but felt right. It always feels awkward to make a huge decision and then try to adjust to it. I think you have to sleep on it for a day or two I consulted with the ND and that helped get my mind going in this new direction as well as solidify in my mind that we have made the right choice. As if Samuel's gut right now isn't evidence enough. It is always nice to speak with someone who speaks "my" language and gets it.

I called Toni, my MW and told her the news. She is another who "gets it." I haven't talked to her since February when she came to visit me at Children's after Samuel's ileostomy revision. She was very excited for us. She is going to come visit soon.

Two days ago, I would say the ND was quite shocked at our decision but yesterday he completely understood. I caught him up from basically April forward since I haven't spoken to him much beyond little unrelated things since then. I told him about everything we have had happen with Samuel's gut since then and then compared it to last year at this time. The more I think about it, the more I wonder if we will ever know the extent of the original damage done in April/May of 04. We talked a little about the decision to stop and I told him that though I liked our Onc in Seattle a lot, he just could not or would not understand that Samuel just cannot hack it and continuing to try is just doing more damage. He told me something that really helped solidify our decision to leave there. He said that all those Oncologists are motivated by is their end statistics. He also said that they are just completely overworked doctors. Seattle Children's does tout some of the most impressive outcomes for leukemia in the nation. So I guess it is okay to save the kids life at any cost so that their statistics look good. That would certainly explain never wanting to deviate from the protocol, wanting to push on. That would also explain why some of the top cancer centers in the nation refused to take our case. Mark and I have talked about the motivation of the new Onc. What is it? We were already established elsewhere, he could have refused to even meet us. He could have told Mary point blank he was not interested in taking on such a tough case. But he didn't. And he seemed to really have a clue where we were coming from almost as if he had read my entries prior to meeting. I am going to wait until he is up to speed on our case which I hope to be next Wed and then ask him why he is taking our case. At this point, I think I have a right to know his motivation. At this point, I want to know that the Onc treating Samuel is doing it for the "right" reasons.

I wondered a bit out loud to Mark if this Onc was taking our case because unlike most parents who press on even though it is obvious the child has had enough, we know our child has had enough are are choosing quality of life. He certainly agreed with our point of view, so far....I keep waiting for the other shoe to drop. We'll see. I wonder if any of these Oncs secretly wish parents would stop but have to continue to treat at the parents request even though it is killing them inside to do so. Some of these people have to be human, right? I wonder if we found one. I could bring out the "human" side of our Onc in Seattle but it usually took some awful thing happening to Samuel to do it. It really pisses me off to know that most of these doctors are really motivated by the stats and getting more business for their establishment. Whatever happened to saving lives without doing harm? Guess that goes out the door when the almighty dollar is involved. Well, no thank you. I am happy to NOT be a part of that.

I talked a little with the ND about Samuel's current gut issue which is basically that it has slowed or shut down in some part. I told him about previous chemo that seemed to have the same effect. Except in past cases, it was intense chemo, not one Intrathecal dose after four months off. That is some serious sensitivity. I told him I chalk it up to being a mechanical blockage caused by chemo and when the chemo wears off, it will too. It is obviously not food because the enzymes he gave me last year always resolve one in a day. This has been going on since Monday to some degree. He listened to everything and agreed. We talked about his usual issues which are just a lot of pooping and he gave me some new things to try to get him pooping less and eventually gaining control of it and being able to potty train. That would change all of our lives. Samuel would feel so much better and this should increase his nutrient absorption which right now we know is not good since I am basically doubling up on some things to get him nourished properly. Mark is off to the store to pick up some of the new things. Fingers crossed that we can make some headway there. After we get control of this, then we will be discussing cancer stuff, a lot of which I feel I am doing now. Most of my things are nutritional, and not supplemental. We held out a lot of that while on chemo to be sure things did not interact, but now we are free. Free! To do what we want. I am so happy.

Two days ago, the ND was telling me that he could get his pooping under control, yesterday he told me that he has never had a patient with this much damage. Gee, like that is any surprise. Who has? I made it a point to tell him about the surgeons evaluation of Samuel's gut because I don't think that anyone BUT the surgeon and us really get the magnitude of it. The ND still feels this will be effective so I will try it. I hope to be able to start tomorrow assuming the gut problem clears up today.

Samuel got to feed Seagulls yesterday. He really loves birds, ducks and most any animal really but emphasis on birds. His duck love has morphed into penguins. He is now old enough to tell the difference between ducks, birds, chickens and penguins. Previously they were all quack quacks. He just gets giddy when he sees any of them. His wish is certainly to have some of his own. I hope we can make that happen next year. His job will be to feed the ducks and chickens and gather eggs. That will just be heaven on earth for him. Don't you wish life was really that simple?

Special thanks to Carolyn. You are a very special lady and I pray that God has some very big blessings coming your way.

Much love!

12/8/05

It is done. Yesterday I felt relief. Today it feels bittersweet.

We woke up yesterday to the power out again. This is really getting old. I swear our power has gone out more in the last month than the last five years we have lived here. And I am getting really tired of someone wondering if the bill is paid everytime it happens. Our power was restored about an hour before we needed to leave for Tacoma. Mark's mom came and stayed with the kids. A.D. slept the whole time we were gone and Samuel slept for part of it.

I woke up feeling confident in our decisions but a bit nervous about the meeting. Not sure why. It always feels strange and slightly wrong to leave the house without any kids. I chose to wear the birthstone nursing necklace made for me by Regina a few years back So I felt like I was taking them all, just around my neck instead of in tow. I think I played with it the entire time. I haven't wore it for awhile.

Samuel was sad when we left him and I missed him a lot while we were gone because I know he did not feel well and he needed me. We could not get home fast enough for me to check on him and know he was okay.

We ate lunch on the way and briefly went over what we want for Samuel which was pretty much everything I wrote the night before. Just wanted to be sure we were on the same page about everything. The rest of the drive in was spent talking about what we want to do next year, where we want to live, what we want to do to make a living, how we want to spend our lives, improve our lives, and make the best of Samuel's life, however long that may be. He deserves to have his mom and dad around him and we are trying to figure out how to continue to survive by simplifying everything.

So, we arrive and sit in the waiting area. Someone we did not know checked us in. no one was there waiting. One family left. Mary came out to greet us and remarked that we had no children, "Did you have anything to talk about on the way?" I told her we spent the time talking about what we want to do for the rest of our lives together. It struck me as funny because I could imagine my parents going for many drives alone never having a word to say to each other. I was thankful right then and there that I am married to my best friend on the planet, we always have things to say.

After that, we headed back to a room to wait to meet the Onc. We visited with Mary for a few more minutes before he arrived. We were all introduced and then told that he was not up to date with our case. He was hoping to look at our old chart, but didn't. He was supposed to visit with Mary a bit about us, but didn't. So I just took over the conversation and said, "Long story short, Samuel has had over 20 surgeries in the last 19 months, with 10 of them being done here in less than three months. His colon is gone, his rectum and anal tissue is "obliterated" per the surgeon who has both revised his ileostomy and then hooked him up. He poops 15-30 times a day and if it is diarrhea, the skin never heals and he just lives in misery. We are done with any chemo that has GI toxicity." We then went over what happened with the Methotrexate of late after no chemo for over 4 months and he agreed that that was just too much after everything else. He then suggested using Cytarabine instead when we stated we still wanted to treat the CNS if possible. I have forgotten about it but it was brought up by a doc at Memorial Sloan Kettering when he was consulted about the shunt and treatment. It is eliminated easier and has no GI toxicity...supposedly. That seemed like a great option and we wondered why our Onc never thought of it. It also has a lot less neuro toxicity over the long run. This new Onc had a lot of other interesting things to say that made us feel this will be a promising move. He agreed that with all Samuel has endured, he should not be alive, or in such good shape. He also agreed that continuing to knock him down with chemo after all this is not a viable option, eventually he just won't recover at all. We know that after this last surgery, recovery has been difficult. By far the most difficult. He also brought up something I had read about almost at the beginning of Samuel's diagnosis. Historically, when kids had as much trouble as Samuel during induction some parents quit treatment altogether. Based on stats, these kids should have relapsed because they did not get enough treatment, but they didn't. He remarked that as much as they think they know about leukemia, they really don't know much at all. It was hopeful in his mind that Samuel has come this far, never relapsed and he did not feel we are palative care because of what the history shows for others. He also mentioned that there is a new antibody that he is going to find out about using for Samuel which seeks out leukemia on only a certain type of cell. It does not cause GI toxicity at all. Antibodies are usually good things, not poison. I was pretty upfront with the whole poison thing and told him point blank that in the last 15 months, I have done nothing but build him up nutritionally and had no intention to ever poison him again. Not ever. He agreed. He remarked that the maintenance chemo was introduced in the 60's and has been so effective for most that no one wants to change it of is doing much research into it. For most kids, they have very minimal side effects, they are going to school, not incapacitated. Samuel would never be able to go to school as it is now. Thankfully we had no intention of him doing so. He was going to get up to speed with our case and then throw it out to other Oncs in the field through a database. We told him about those we consulted who basically told us we were uncharted territory and good luck. He figured he would get a lot of this, but at the same time, maybe someone would have some ideas of non-toxic things that are up and coming. Seems refreshing so far. Mark said we were willing to try things that were not GI toxic and I ended his sentence by saying "Once." We will try it once. He caught that right away and repeated it back. I told him we have consulted an ND and wanted to be free to seek out cures for Samuel that are healing, and nourishing and non-toxic. He was fine with that. We also mentioned the inability to get pain relief for times when we have diarrhea. He is getting an outside pain service to address this and get us morphine or anything else we need. We will also look into home health care to come to us for labs, and teach Mark how to access the port in case Samuel needs meds or fluids at home. Emphasis on home. Emphasis on US doing as much as we can. He also mentioned he knew a GI who used a narcotic that slowed the gut more than knocked the kids out. He was going to find out what it was. We did talk about Palative care and set up a meeting next Wednesday to fill out a Palative Care form and basically discuss quality of life, Samuel's life. How can we improve it? This is something that they are doing for everyone there now that Mary is heading up. This form also includes making end of life choices now rather than in the heat of emotion should we ever have to do that. I guess as a mother we make a birth plan and as a mother, I will now make an end of life plan. I reminded them all that we are making the decision to refuse further poison treatments because we feel our child is cured, not going to die. I reiterated a lot of my post from 12/6 as far as what we went through and how we want Samuel's life to be. They all agreed to agree with us.

The new Onc is going to call our Onc in Seattle to get records and up to speed. I sent him a note today letting him know of the transfer of care. It is bittersweet. He has gotten us through a lot. He has become a friend in many ways. It sucks to have to choose one over the other but OTOH, an Onc not pushing poison on Samuel is a step in the right direction. Mark and I were both impressed that he had ideas and options for us right away not even knowing much of the history and was willing to get other Oncs opinions as well. Plus being on board with the ND and ramping up the natural side of medicine is a nice bonus.

One the drive home, I felt relieved. In many ways, it was like it all just fell into place. I am reminded of a charge RN in Tacoma telling me on the night before we left there for Seattle, that what we needed was a fresh set of eyes and minds to help us. I think that we are in that place again. We just need a fresh set of eyes and minds who have time to look for other options and that are able to listen. Mary's last comment to me is that this Onc likes to work WITH families, not against them.

I feel a bit sad today after letting our Onc in Seattle know. I remember leaving Tacoma, and how awful that felt. I had no problem leaving our former Onc there. But the RN's and social workers were our friends, like our family. It just seemed wrong. We have never had that type of relationship with anyone in Oncology in Seattle. With the Surgical Unit, yes, but Oncology, no. Our Onc seemed like our friend, but no one else. When we arrived in Seattle, we knew once we got into the swing of things, that the choice was right. But I think we have gone as far as we can with our Onc who is more specialized in bone cancers than leukemia. It would be nice to be in a place where we feel like we are among friends, and like the Onc is our friend as well. Only time will tell for the new Onc. He has some big shoes to fill. And obviously any surgical need will send us right back to Seattle where we know they have the resources to fill any needs. My hope is that we are done with surgery for a very long time. My goal for inpatient hospital stays for next year is 0.

We got what we wanted and will get no further hassle regarding treatment. When we want to be done, we can be done and just shift to quality of life care. Samuel can life. We choose life.

Yesterday Samuel only pooped twice. Today only twice. Obviously we have a problem. Keeping up with his gut is a full time job without adding chemo. Currently it seems to be tied up in knots. I have been trying to resolve this for the last few days to no avail. I am wondering if it is a mechanical blockage of some sort caused by chemo. Eventually, it will work itself out as the chemo effects do. Tonight, he is miserable. He wants to eat and food is only making it worse. I am so glad to be done with adding things that ruin it. This is a day to celebrate, and thank God for guiding us down this path to what we pray is the right person to finish the job. I pray for our new Onc to be led by God to anything that will help Samuel. Rejoice with us for being free to choose what we feel is best of our son.

I talked to the ND tonight and told him we were stopping all chemo other than CNS. He was shocked and then very sorry to know the reasons. We will speak further tomorrow afternoon first trying to get the poop situation under control and improve his qualit of life, and then future plans to kill off any residual cancer. Today truly feels odd. A major turning point for everyone.

12/6/05

Well, we have been dealing with the nadir for the last few days. It started with a day of painful pooping for Samuel which went into the night as well. I was up with him four times. The minute he would go, he screamed bloody murder and it woke him out of a dead sleep. I know because he has been sleeping with us. Then the next day he completely stopped pooping and that day culminated with a puke. Then he was able to poop again. Now today, he has not pooped much and what did come out is full of mucus. Or as we call it, "chemo poop." The poop that signals damage to the GI tract, hence the mucus. It seems like a blockage in that he eats, but nothing comes out. For the last few weeks, he has been sleeping through the night fine and been able to eat pretty well without issues. And of course now, we are having problems. But I am sure it is coincidence, or "all in my head." I am sure my Onc will find some way to write it off as such. Mark and I are both glad that we haven't compounded this reaction by adding more chemo because while it sucks, we have been through much worse. But it is obvious that if he has this type of reaction to the weekly Methotrexate, I am not wanting to give anything daily, ever. I already know what will happen. But it still leaves us with the question of whether we should continue with the spinal taps at the very least if we know what to expect and can manage the side effects. Especially if they are not compounded with other poisons. The risk of relapse is highest here so it is something we want to continue if we can. We shall see what tomorrow brings.

Last fall, Samuel was on this same treatment, but at full doses and he did fine. We did not have many issues with his gut until we started the intense phases of chemo. It is just amazing how much can change in a year, and two more surgeries.

Our meeting is tomorrow. I asked Mark if he thinks it is a mistake to do the meeting. He feels hindsight is always 20/20 so we just won't know until we go. His mom is staying with all the kids so we can go alone. It will be nice to be together alone, just wish it was for something fun instead of something critical.

I have thought and thought and we have discussed and discussed both with each other and I spent quite a bit of time giving my mom an earful last night. I have read the research, the history of leukemia treatment specifically long term maintenance. I know why my Onc wants to press on. I have read the stats. I know why in their minds, if we stop now, they feel Samuel will eventually die. I have seen it in black and white. I also know that our son has never followed their statistics or been predictable. Yet, they continue to try to put him in the box with all the others. Makes no sense. I don't think he knows what else to do with us. There is a great sense of wonder even with Oncs of the past as to when enough treatment is enough treatment. It would seem that no one has closure. Not the Oncs, and certainly not the parents, even those who complete the entire protocol. In an Onc's mind, it is unethical to stop treatment if they are certain a relapse will occur. But OTOH, it is unethical to continue to destroy a boy's body with no guarantee of a cure. There is no peace for anyone. With that said, at this point, anything they have to offer us will continue to ruin Samuel's gut and make him miserable. We have no guarantee of his survival with treatment, but do have a guarantee of his suffering with it. We have no guarantee of him being cured if we walk away from treatment, but do have a guarantee of a lot less suffering. Last year when Samuel was hospitalized, suffering, enduring surgery after surgery, and eventually comatose, I could not stop thinking that that was no way to live, and no way to die. To think that he could live fine up til two years old and then die like that. Never know what hit him. He would never understand, we could never explain it to him. He could not even communicate with us and we were not sure if he understood us. But to watch the life drain out of him and wonder what tragedy the next day would bring and the next day.... I would have been absolutely devastated had he died in that condition. My last words that I know he understood were saying he could not go home, when he begged to go home in the ICU. Those were some of the last words he said that actually communicated to us. It was incredibly awful. Had he died then, I would live with never knowing if he understood any of it, any of my words, any of our love. Because he lives, I know now that he understood everything and most of all, he knows we love him.

We have been given an incredible gift, a miracle that his body and life were restored beyond what any doctor ever believed possible. Looking back at all he has endured and thinking that sometime in the future he might die, do I want to feel the way I did last year? That it was all suffering and in vain? That his life was nothing but pain? It is bad enough he has to live with pain everyday as it is, but do I want to intentionally give him things that add to that? Or do I want to look back upon his life and say that we gave him the best life possible? That we did our best for him to make him happy? That we protected him from further poison that will ruin his body, no doubt about that one. I know I want to look back and say that we made his life the best it could be. I don't want to look back and regret that trying to "save" his life, we ruined his body and made him endure things that could have been avoided. Enough life has been stolen from this baby.

I don't want to bury him. But the drugs they offer my boy may be "medicine" for some, are poison to him. I will put my trust in God, not man. Man has certainly failed us. If Samuel is healed in heaven, then I will know where he is and he will know where I am. I will know he will have the best great grandma ever to train him up right. If not me, then Delma would be my first choice as mama to him. I don't know what God's plan is for Samuel, but I trust that is is for a long and abundant life. I have given him to God and I will not stand in the way of his destiny. I choose to be different from the naysayers and expect it to all work out. I choose life and I expect nothing less for Samuel. His will to live is proven and I want to let his body have every chance of fighting any cancer that might be left on it's own, the way it was meant to.

I don't know what will happen tomorrow. I pray that God show us and guide us into a place where someone can understand that continuing to poison him is insane and cruel. Maybe an outsider looking in will be better at feeling empathy towards him rather than our current Onc who just takes it all in as normal.

Special thanks to the Agnew family for the huge box of clothes and gifts. I hope the kids were not supposed to wait because they sure didn't. A.D. went crazy over the doll and looks adorable in her outfit. Kaysha has worn her clothes for two days. The puzzles have been worked several times by all and the diaper covers and clothes fit Samuel perfectly. Daniel really needed the jeans and he loves the camo! Thank you for your lovely note and your love and sacrifice. I would send you a quick note but don't have contact info for you. Thank you so much, it just made their day!

Thanks also to Paula for Christmas for me. It truly is!

We thank you all for your love, support and prayers. It means everything.

It is better to put trust in the Lord, than to put confidence in man. Psalms 118:8

12/3/05

The Care Conference has been set up for Wednesday, 12/7 at 2pm. This in my past has been a really bad day. It is also my mom's birthday not to mention a historical date as well. The foreshadowing is just sickening. We will arrange for Mark's Mom to come and stay with all the kids for this one so that we can actually have a conversation that is not continually distracted. That is probably half of the problem with our meetings in Seattle, they are always distracted by kids, namely A.D. who can never shut up. It is hard to keep thoughts straight and is almost better to make a list on paper as I usually so I forget nothing and stay on track. They have blocked out an hour for this. I think our longest meeting in Seattle has only been 30 minutes so I hope that this means the new Onc actually intends to listen. I like these scenarios because I am roped into nothing and I can lay it all on the line and they can take it or leave it, like me or hate me. It already seems like it will feel very strange yet familliar. We have had several Care Conferences there and all of them were because of everything bad that was going on. The difference this time is that we are not inpatient doing it in Samuel's hospital room. The first one was interrupted by the surgeon who removed Samuel's entire colon. This was unexpected and killed the whole thing. The next one was done after the hydrocephalus occurred and we "thought" we were on the right track. Did not realize it would take another 9 head and 5 abdomen surgeries to get it right. That was at a time when it seemed our treatment options were stolen from us. It has seemed like this from almost the beginning though. Like the treatment options were taken away because of the damage done from chemo right from the start. I will never forget being told when it was thought that Samuel had relapsed in the CNS that we would have to add even more stronger chemo to fight the cancer. This after he was already comatose and seemed mutilated from surgeries already. I remember thinking, "Well he will just die then because we won't do it." And yet, he pulled through, survived, never relapsed, came home and became a little boy who amazes the people who thought he should never be "normal" again.

We spent yesterday with no power and five inches of snow on the ground. It was restored last night at 9pm. I am a day behind on everything, laundry, dishes, work.

Samuel is doing well, just a bit more tired. The cough persists, but his butt has improved. I am still holding my breath.

12/01/05pm

Mary called me this afternoon and I asked her point blank what I need to do to be done. To remove Samuel from any further chemo and continued harassment to add more and more. Her question to me was "Do you understand the ramifications of that?" And after I said that I do fully understand what I am asking, she replied that we do have choices.

Trying to sort it all out is like trying to contemplate life, how we got here, why we were born, how we will die, when we will die, what life after death is like. You know, all the what if's, all the possibilities, all the unknowns. Makes for a rotten day. Keeps your head in a fog. You think you have it all figured out, then you don't. I feel handicapped because I need to do normal real life things and try to ponder all this too. This is probably why we have never come to a final decision, because we hope that things will change. We hope the decisions will get easier. This is probably why our Onc doesn't want us to make a harsh decision but to try little by little to keep going. I know he cannot stop trying to keep us going. None of the Oncs we have met thus far know when enough is enough. Certainly we had one Onc who on several occasions tried to continue chemo even when our baby was dying, rotting inside.

It is so difficult to know with certainty what the right decision is. It is obvious what the wrong ones have been, what the wrong ones are. The sick feeling I have when thinking of continuing should be a clue. We ask God to heal our boy, to protect his body from the poison, and it seems asinine at this point to poison him and say that prayer. I just can't do it.

Samuel has had a nice day today. His butt is still red and raw but not as painful. His cough persists but other than that, so far so good. Mark and I talked today about what we want to do. He is wanting to continue treating the CNS if these are the only side effects we see. he doesn't care about the rest of the drugs to treat the marrow, or destroy it, as it were. The elimination of the poison would not be as big an issue if Samuel were potty trained. But of course, we don't know when that would be. If it attacks the GI tract, then it has to go. We are still waiting for the nadir.

It comes down to what is acceptable and what is not. I think it comes down to asking everyone involved if "THEY" would like to live like that. I asked Mary if she could even comprehend what 15-30 poopy diaper changes a day would be like. And how about the cost. Either you are buying diapers or you are washing them. Is that acceptable? And then lets add drugs that magnify that by taking what is normal for Samuel and doubling it, or tripling it. And then adding acid which burns out the tract, the skin and makes him scream, run from me, holding his butt and saying "I'm afraid of you," because he doesn't want me to wipe it. He is afraid of the tub now too. There is nothing topically that helps the skin. We don't know what the inside is like. Morphine is the only thing that seems to help with the pain of it all and we are out. We are talking about giving him drugs that keep his body in this type of state all the time. We would never leave the house. No one could work, we will lose everything, and probably Samuel too. I will go crazy because everytime Samuel hurts or has anything wrong with his butt, I want to kill someone. I have had it. No one understands what Samuel's life is like, what it has been like, but us. Our doctors don't, our parents don't, our friends don't with the exception of Monika who lived through a similar GI experience. How many more times to we have to try these poisons to get it though an Onc's head that these side effects are unacceptable. They have nothing else to offer us. What is acceptable? In my mind, only things that help and nourish at this point.

If we go back to our former hospital, then we will be going into a place where everyone believes Samuel will relapse and die. As Mary said, "if you are going to go through that, where do you want to be?" In Seattle where no one cares because no one knows us? Or there where they all do. Can I just tell you that conversations like this are a real day killer. She is setting up a time for us to do a "Care Conference" there.

Do I understand the ramifications of this? I understand that I want Samuel to live. I understand that I want him to suffer no longer. I understand that we have no guarantee of anything from any doctor we have met. I understand what thinking your child will likely die feels like. I understand what looking at your child every day and wondering how many more days they will live is like. I understand suffering beyond belief and being helpless in the midst of it. I understand that prayers from a multitude got us through. I understand miracles do happen. I understand loving more than I ever thought possible. I understand that the kindness of strangers can be a strength that is overwhelming. I understand compassion for another human being and loving them enough to want to end their suffering if it means that their life will be cut short because of it. I understand that it is not okay to keep up this torture because of selfishness. I understand that walking away will be the biggest act of faith I have ever had to have. I understand that I would rather trust God than doctors. I understand what laying your child's life into God's hands and reminding Him that His plan is for each of us to live abundantly. I understand what telling God to either take your son right now and end his suffering, or heal him and allow him to live without suffering is like. I did that. God answered. Samuel lives. I believe Samuel has a great future in store for him and is a testimony of God's faithfulness. Do you?

12/1/05am

Samuel's butt continues to be red and very sore. One night was all it took and now we are at almost two days of it. I looked up how Methotrexate is eliminated and it comes out mainly as pee, assuming you have a colon within a few hours of administration. But here is the thing, it comes out unchanged, meaning as methotrexate, or poison. This explains the smell and the burning. Samuel has not had much burning since the first night other than anytime he poops now, it is miserable for him. I forgot I am not supposed to be using cloth diapers right now and I am not sure if I used them or not after we got home. So I probably have some methotrexate diapers hanging out, I don't know. The poop we used to dump from Samuel's bag into the toilet has eaten off the porcelain if that gives you any idea of the toxicity of it. We have not hit the nadir yet where the poison actually starts stripping the gut. But, we do already see side effects as the Methotrexate "Cough" is back. I noticed it last night and asked Mark if he did. It sounds similar to the "cough of doom" which is usually followed by a puke, but it just persists because the lining of the lungs is being stripped. It is rather sickening to see how much this small dose has effected him considering it was 12mg and he has had as much as 300mg IV. But cumulative effects means it is being added to the massive amt he has already gotten.

I had one of those rotten days yesterday where my mind feels handicapped all day. It is so hard to concentrate on anything else when it is occupied with decision making for Samuel's future. We have had some interesting conversations here again. And I just had to ask Mark, what was I thinking to agree to add any more chemo? Why didn't I just say no? But I told him I agreed because I thought that was what HE wanted to try before completely giving up. It would be so nice to just be like the doctors and think of this stuff as "medicine" and think it is great lifesaving garbage, but then we get home to reality. We talked about how if we give the new poison and end up with three days of diarrhea which I am quite certain will happen, what type of support will we get? Do we have morphine? No. Are they willing to call it in? Probably not. We will be suffering here, or going inpatient most likely because it will be unbearable. Am I willing to do this? No. What the hell were we thinking? I have asked myself, the same questions, as well as asking Mark. When is enough enough? Do we have to keep making the same mistakes to "get it?" Obviously anything we give Samuel now is going to be worse for him since every gut surgery has left his gut in an even more delicate and sensitive state. And supposedly we need to do this for two more years. Keep his body in a state where organs are constantly being damaged and his WBC always low so it cannot repair itself. Continue to ruin the GI tract. All with no guarantee of survival. Seems to me the guarantee we have either way is nonexistent.

It was unclear what to do the day we arrived home from the clinic, but very clear what to do yesterday. I called Mary from our former hospital to set up a meeting with their Onc there. I am tired of our Onc only hearing what he wants to, believing what he wants to and simply not getting it. I am tired of the changeovers that are always happening there. You go in for a month or two and it is all the same people, then the next month, all new people are there. No one knows you or really cares. It was not this way where we came from. The same people visited us daily. These people came every time we had a surgery planned or other crappy test because they knew we were going through hell and wanted to be there. And they were. There has never been anything like this in Seattle. The nearest we have gotten is with our fav RN's on the Surgical Unit, namely Julie and Esther who actually check in and stay updated. Mary, our Social worker from our former hospital has been on contact with me for the past two months even though we are not hers anymore, got a charity to adopt my family for Christmas so that the kids could get some things under our tree, and also got the same charity to make an emergency payment of part of our house payment. Just in the last month. Our social worker from Seattle is scarce, doesn't ask if we need help and is basically useless as I have found out previously. It has become very clear that we need to be in a smaller place and the bottom line is, if something happens, I want to be among friends, not strangers. And we are at the point where I don't know what of if we want to to anything more with Samuel and I don't want to be harassed. You would think it would all be worked out in my head as to what to do, how to proceed, but it is just so incredibly hard to know what the right thing is. I haven't heard back from Mary, but hope to today.

Thanks to those who sent us notes of encouragement and prayer. Someone mentioned that she did not know what to say, well please know that it means a lot that you said anything at all. Much love.

11/29/05

We had our clinic day today. Samuel's counts are all in the normal range today.

WBC 6700

ANC 1800

HCT 34.4

PLT 450K

I was very glad to see that as well as that his electrolytes were all great. His weight is at it's highest recorded point of 17.6kgs and he is now 100cm tall. He has been really growing lately. The port worked perfectly. I don't remember our other port ever working so well without being flushed first so that was nice. I got so used to it not working that it was weird to see the line turn red and fill with blood.

We left this morning in the rain and came home to the first blanket os snow. The kids were really thrilled!

Well, my Onc set me up really well today. My congrats to him because I did not even know what he was up to until it was too late. He did his usual questioning about Samuel's butt, how many times a day he poops, etc. I told him that it is still a lot, like 15-30 times a day. 10 times a day was a good day. But the acidity problem seems to be under control so while he may go a lot, it does not seem to be ruining the skin. I guess this was the news he was hoping for because his next suggestion was adding more chemo back. Adding the once a day poison which I believe induced diarrhea previously. Of course, then it was in a bag, now it would be a living nightmare. His remembered me mantioning the diarrhea and said that if he is pooping now X amount of times a day anyway and we have the acid problem under control, then why not add this back. Apparently he forgot that Samuel pooping as it is now, is NOT diarrhea. It is what Samuel's body does. Chemo causes diarrhea, read, acidy watery poop. Big problem. That would be because it attacks the GI lining and destroys it. So he wanted to know how we felt about that. I answered his question with a question I have been saving for the proper moment. I asked him if he considered Samuel palative care at this point. I don't think that was the answer he was thinking he would get. I asked him if when he looks at Samuel, in the back of his mind, he feels he will relapse and die. He still thinks that Samuel has a great chance of being "cured" when we are done with this so called protocol. Especially considering the amount of chemo he has not received and still "appears" as he said it, to be in remission. So in his mind, palative care is what they do for someone who still has active cancer and no chance of chemo working. I guess in our case, he thinks that the chemo still has a chance to work....assuming we give it.

So, we agreed that we would try a 1/2 dose, again and see what happens. Previously, I was able to give it for three days and then it caused three days of diarrhea. And that was after I stopped giving it. It took three days to clear up. I reminded him of that and told him that if that was to happen, it was unacceptable at this point. That kind of diarrhea ruins skin. He agreed. I then asked him if he has seen the new St. Jude commercials on TV. He said he had, but then realized that the one I was discussing was not the one he has seen. The one I am seeing is of the girl who supposedly cannot tolerate chemo so they were doing other things for her. Everytime I see it, I wonder how many body parts she has lost before they figured out she could not tolerate chemo. Our Onc was not completely sure what they were referring to, but figured it was some genetic testing to check for markers showing that certain drugs would not be tolerated. So to compensate for this, they were just giving minute doses, say one tenth of the poison dose. So here I was thinking that they might be doing something worthwhile for kids who cannot take the poison, but as it turns out, they are just giving lower doses of the same poison. It is still poison. So I asked him, if Samuel cannot tolerate these poisons which he feels give him the best chance of survival, then what does he have to offer us. Want to know the answer? LOL, me too. He had to go. No, he was not paged, he just thought of a reason to exit and left. I already know the answer, they have no options. And he has said point blank that he had no idea how Samuel would ever be able to go through a relapse protocol, or transplant if his leukemia was to return. I guess he is thankful to know that we would never do this to him. I am sure that is a load off. So, if Samuel's cancer was to return, there is nothing they can do that would not be poison, or torture him further.

Well, Samuel had his spinal tap done today and chemo injected. He woke up horribly grumpy from that sedation but was fine until tonight when his poop is already to toxic that it has burned his skin already. The chemical smell of the urine and poop is very familliar. I am livid. I gave him benedryl and ibuprofen and he is now sleeping but I don't know if we are in for a rough night or not. The nadir of this poison and time when it hits the GI tract the worst is day 3-7. If things get worse from here on out, Mark and I have already talked about being done with this as well. Didn't even mention that to the Onc yet. We will see what we have yet to endure with this. We won't try any other poison until we are sure of what the effects of this one are. And even then, I am not sure I can go there after this. He has spent part of the night screaming, pooping and crying. He did not want to sit on his butt. I put him in the tub to try to clean it and that was like adding fuel to the fire.

We always see new people in the clinic and I try not to talk to many of them because I am always grouchy. A.D. made friends with a girl her age and her mom and I started talking. Her other daughter was doing her last day of counts, and then a port removal. She was done with chemo for leukemia. The mom was asking me about Samuel and I try not to say everything that has happened so we don't scare them too much but since they were done and she asked tons of questions so we ended up having a huge conversation. She had no clue what TPN was, or many of our other complications. Obviously her daughter was one who just "sailed" through. Her final comment was wondering if her kid "got enough chemo." When is enough enough? Do they have to be falling apart for parents to get that it is enough?

Today must have been the day for people to be inquisitive. After a long wait in the clinic for everything to get done, I was not quite as pleasant to the next person who struck up a conversation. He obviously remembered us gave me the 20 questions thing while I was in the pharmacy. He noted that Samuel did not mind his "back poke" today. I had that terminology. Hate it. I guess saying Intrathecal is too hard for we lay people so they have to simplify it. I told the guy that Samuel did not mind because he has had over 20 surgeries, probably 50 or more sedations and if Samuel knew he was being poisoned, he would probably be a bit more pissed off. You would think that would have ended the conversation but he persisted. So after going over the "short story," his comment was, "Well, what are the alternatives, you know?" He sounded so defeated and roped into this system I hate. Well, here the alternatives are.....I choose quality of life. I choose to seek out other things that could or may have already saved Samuel's life. Our options have been taken away from us because all the drugs to "cure" leukemia are poison and gee, our kid cannot tolerate poison, obviously. While he might be the exception to the rule because everything that happened to him happened immediately, eventually kids on heavy chemo for very long periods of time start losing body parts, needing new ones to survive, or just dying from chemo complications. The effects of the poison are cumulate, and the damage is permanent. Or they die from their cancer because the chemo was too toxic and their body was too weak. Lovely choices. What are the alternatives? I choose to take responsibility for Samuel's life and spare him as much of it as I can. Here I thought Samuel's complications were so rare and now I am watching another baby struggle through the very same thing. A baby! It makes me feel ill since I know what living through it is like. What are the choices? I guess we all have to go to bed with our own choices but as for me, I will never choose that. I will never be responsible for putting Samuel into another roller coaster of chemo catastrophes making him suffer endlessly, be dependent on tubes for every aspect of his life, surgery after surgery to "fix" it even though we know it is not fixed. I will never sit beside him for months watching it all unfold because NOW I know better. I know what did it, and will never allow it to happen again. Our Onc said today that while Samuel's quality of life was not great, it was certainly better than it was several months ago, or a year ago. I guess that helps him sleep better at night. It won't help me sleep better tonight because he is miserable because his body has been ruined. And the "medicine" that is supposed to save him, is continuing to ruin him instead. Oh, and what do they have to offer kids who cannot tolerate their poison? Nothing. Thankfully, I do NOT feel helpless on that front. After all that conversation, the man wanted to know if we had done our Mark a Wish trip. As if we have had time. As if Samuel was able to get on a plane and leave. Obviously the concept of all he has been through is just unfathomable even to someone else walking down the cancer road with their child. I just laughed when he asked. Obviously over his head.

Samuel is screaming, again. He was asleep, now he is not. And all because of something I allowed thinking that we are doing the best we can for him, with the minimal amount of treatment we can get away with. I hate it. And I don't have enough morphine to get him through the night.

How much is enough? Did he get enough? Will there ever be enough? Will our Onc ever figure out that he has had enough even if he doesn't feel it is enough? Have I had enough? Hell yes.

11/25/05

The day could not have been more perfect! It was exactly what a holiday should be like. One day where it feels as if there is just peace in everything you do.

Mark put the broiler element into the bake side of the oven and it worked fine thank goodness since nothing was open. The meal was fantastic! I spent the majority of the day in the kitchen which was actually quite satisfying. We were able to prepare a meal that was almost totally organic, including the turkey. It was the first turkey I have ever made and it was moist and delicious. Everyone was raving about the bread. I made one loaf of Challah for dinner and one for breakfast today. I was understanding how thankful the pilgrims must have felt on their first Thanksgiving knowing that they finally had enough to eat. It has been a long year in which there were times when we did not have enough food for everyone to enjoy a meal. I am thankful that we were able to have such a nice meal.

The kids were angels when my mom was here. Even Daniel sat up to the table and ate dinner. Usually, he is almost as bad as Samuel about trying new things. Samuel did not eat with us, and refused to try anything. He did say that he did not want to eat the bird, he wanted to kiss it. It was cute and hilarious and sounded exactly like something I would expect him to say. he even somehow managed to not poop a lot yesterday. Maybe like ten times instead of the 20+ from the last few days.

I marveled at my children last night and how perfect our family is. There is always someone ready to sing, dance, laugh, tell a joke, scream, fight, run, act silly, hug, love and enjoy. A.D. showed my mom how well she knows the "A.D. alphabet". That would be singing A.D for every letter in the song.. And she sings it at the top of her lungs and enjoys it more if everyone sings really loud with her. She also dances quite well and does somersaults. Samuel showed my mom his current favorite movie, Nemo, and Kaysha and Daniel were happy to play Crazy 8's. It was nice to enjoy a perfect day, and night. I don't think the kids went to bed until after 10pm. This is fairly early for Samuel but late for the rest.

The only thing that would have made it more perfect is if Samuel would have sat up at the dinner table and ate dinner with us.

This morning Samuel actually sat up with us at the table and ate breakfast. That just makes me feel so happy to see. Especially when I know he is eating something good. Of course, now we just pray it comes out the other end okay with no blockage issues. Everyone enjoyed a fabulous breakfast before embarking on the new day. We spent the morning at Mark's parents visiting and Kaysha and Daniel are staying for the customary day of the week stay with them.

For as uneasy as I have felt the last few days, an overwhelming peace has come over me. I hope it will last longer than the weekend. I have spent so much time thinking of all the bad things we have endured, and how as much as people try to understand, they just cannot fathom what a day here is like. But yesterday, I was just so reminded of how worth it this journey has been, to see everyone so happy, enjoying each other and needing nothing outside these walls to make it any better. We have experienced great sorrow that we pray that no one else has to experience, but at the same time, we have experienced joy unspeakable about things other take for granted. Things like seeing your baby eat a meal with you. Things like seeing your baby play with his siblings, wake up happy, and tell you he wants to kiss the bird. Things like having all your children alive to share the day. Having a hsuband you love dearly and needing no one lese as your best friend. Hearing all your kids ask if you will make the bread again for Christmas and appreciate the effort you made to feed them well. Count it all joy. We did exactly what we wanted to do and spent the day exactly as we wanted to spend it, letting nothing spoil it. Life is too short for anything less. In this one day, life was perfect, and we all knew it. My Mom called today to thank me for inviting her and merveled at what nice children we have. How awesome is that?

Enjoy the little things this weekend. Much love.

11/23/05

Samuel is doing well despite a sore butt. It gets better, almost perfectly healed and then for no apparent reason, it gets worse again. Maybe the pooping 30 times a day could be adding to this? You think? Some days are still beyond ridiculous and I swear all I do is diapers. He got to play outside briefly today thanks to the rain tapering off but the yard is a mudhole and so small that no one wants to stay out long.

We have spent the last week or so cooking, baking, soaking flours, etc. in preparation for Thanksgiving. I decided that we needed extra good meals every day for the last week or so and have revisited some of my old cookbooks as well as new ones. Kaysha and Daniel have been helping in the baking as well as the gobbling it all up. It is fun to be making more healthy treats this year. I guess we have overdone it already as the element just went out on my oven sending Mark to Home Depot tonight to find one but there wasn't anything and now everything is closed. Tomorrow is not looking great for dinner at our house unless the top one will work on the bottom. Hmm. There is always something that makes it memorable.

We will be home for Thanksgiving this year with my Mom coming by for dinner so it will be quiet but nice. I like being in my own home, not traveling to someone else's and visiting with "their" company because "I" don't have to be on my best behavior. I have been thinking of how nice home is. In my home, my family is free to be themselves. We don't have to explain ourselves, our situation our current problems, with others. In my home, nice happy people, us or children, may mingle around each other, and grouchy people can go mingle with themselves. At any rate, they and we can be themselves and not have to put on an act for others. Growing up, I had to leave the house to "be myself". I have thought a lot about what a home should be, and I don't want my kids to feel like they need to leave to be themselves as they grow up. It is nice to have a safe place to do this without judgement or condemnation from others. I just don't put on an act very well anymore and we all know that young children sure don't. Honestly, after the last few months, I am tired, worn out really, and desire a major lifestyle change. I think everyone feels a bit of cabin fever and boredom with the same routines. A change isn't likely to happen anytime soon however, and so I am feeling the need to be an introvert other than with our own family within these walls and focus on what we need to do to make our lives better in the coming year.

Last year at this time, we were dealing with a similar issue with Samuel. His anus had just opened up after being sealed without us knowing about it for months. He was sore from that, the trauma of it, and getting over the first month of horrible chemo/poison after a six month break. It was pretty vicious and unbearable at times, yet we all managed to get through it. Tonight I am thankful it is not last year at this time. I am glad that is behind us. I am thankful that we seem to be out of the worst part of the take down surgery and hopefully moving on to better days. I am thankful that the seemingly hardest decisions we have ever had to make are behind us. I pray daily that we chose well. I thank God for every day Samuel is with us, alive, happy and healthy. I beg for another day. I beg for a week, a month, a year and a lifetime. I think that every parent with a child who has faced death feels this way, says this prayer, in their own way. I think after having your world shatter before you, you never get over that feeling that the other shoe could drop at any time. It is hard to free yourself of that torment sometimes especially when you see others dealing with tragedy at every turn. I am thankful that this year, I have only spent 30 nights in the hospital unlike last year where it was 100 nights. I am thankful that as of right now, there are NO surgeries planned and we are not dealing with any unforeseen complications.

I feel a bit melancholy and guilty for feeling that way when I look back at this year and wish we were a bit farther down the road. Certainly at the beginning of the year, I thought we would be. Still,I have found myself thinking ahead to next year at this time. I hope for many things. Things I hoped for this year that did not come to pass. A whole year is almost gone again and these things are still on hold pending "normalcy." Next year, I hope that by this time my babies will BOTH be potty trained. I am so tired of poop, and diapers, my enormous water bill, skin problems, pain and torment. That would improve life significantly. I pray we will be spending Thanksgiving in a new home, one with land, things for the kids to do outside, freedom, and Bud. That would improve my mental attitude a lot. I pray that in the next year, Mark will be able to find work outside the home. Something he likes, not just a job and an employer who understands and is compassionate to our situation and the needs that are placed on Mark's shoulders since he is the "eyes" of the family. This would allow me to get the break I need from working to make ends meet and shift it to working to pay for the "other" things we need/want such as to get the kids into swimming lessons. Tae Kuan Do, gymnastics, or taking a day trip somewhere. I would be free to school them in the way I want to, rather than in the way it is now, which is on a very strict time schedule. I could cook, clean, keep things caught up, put some photos in a photo album, take the kids to the park, creek, or just for a walk around the block. I could think about something other than what consumes my thoughts now, which is how I need a change to this NOW. We have so much to be thankful for, and I am thankful, but it is and has been a long road and it is hard to look back and not feel sad for the many losses and suffering, and it is hard to look forward and wonder if any of my goals will ever be realized. I guess there is a word for how I feel, or two, burnt out. Yet, we continue down the unknown path. We cannot turn back and we cannot fast forward. And I wonder, if this was next year, Thanksgiving of 2006, would I want to fast forward to that time. Or will I was we were back in this year to avoid whatever lies ahead. I don't know. I heard the song, "Jesus Take the Wheel," the other day and I think that sums up where I am right now.

I want to live, not get by. I want my children to live abundantly I want them to have fun, and enjoy childhood the way we did when we were young. I want my Pooper to live without pain, hospitals and fear. I want to feel safe, I want to breathe without wondering what the next moment will bring. Sometimes if feels as if we are moving slowly forward but looking over our shoulder always for the "next" plight in our saga. I would like the most major event of next year to be us moving. I want to stop feeling like I dive into the huge sea and only come up for breath when things calm down.

Samuel's spinal tap scheduled bright and early Friday morning has been rescheduled for Tuesday at my request. I did not realize I guess that it was the day after Thanksgiving until Monday and we have plans. They do not include poison. That could or could not be a very bad thing and I am not looking forward to it. I want to see if his labs have improved, because I have waited to make any decisions as to who to call on that until we get fresh numbers. I am sure my Onc is really impressed that every time they make a poison apt for Samuel, I change it.

I pray that we can find a doctor for Samuel who will be able to help him in 2006. We are still contemplating meeting the Onc at our former hospital but at this point, ANOTHER doctor's apt is almost too much to ask. But the fact of the matter is, everyone so far has fell short in some way or another and it would be nice to have someone who would treat him as a "whole" person.

I find myself thinking of those less fortunate right now. Not less fortunate financially, but less fortunate with children fighting illness or children who are no longer on this earth. My heart and prayers go out to them. We will gather tomorrow as we have all week, to spend time together, to remember WHY we celebrate Thanksgiving, to be thankful for and to all those who have helped us get to where we are today. We are thankful that we can put food on our table and teach our children how to prepare it. We are thankful that our family can just be....

When I look at Samuel, I see a part of myself that are simply not there with my other kids. I felt it from the day he was born. I knew then that he was very unique. I look at him today and flash back to past events, and easily remember how lucky we are to have him here today. I look at him and see a miracle. I still try to savor every moment, memorize what he says and does. The other day, he crawled into bed with me and cuddled up and said, "I'm here with you, mama." This is something I used to say and do to him all the time when he was in the hospital, especially in the months where he did not talk, or was just fresh out of some surgery, seemingly knocked out by morphine, or just sad, and not opening up his eyes. I would cuddle up with him, hold him, and whisper that into his ear. A lot of the time, he never responded. I never knew if it ever helped him or not. I wonder what else is locked up in his mind just waiting to come out. At any rate, there is a bond there that just isn't matched by anyone else. He is a miracle. I will always be thankful that God knew just what I needed and gave me this child.

Special thanks to Candlelighters for helping us in a way no one else could right now. Thanks to Mary for whatever you did to make it happen so fast.

Thank you all! Each and every one who faithful reads and prays for us. Thank you all for keeping us going.

Happy Thanksgiving. Much love!

11/18/05

Samuel is doing great! You would never know he did anything out of the ordinary this week. IN fact, he has required no pain meds at all and has been bouncing off the walls. I wish I had his energy so I could get a lot more done in the day. The clinic called today to set up his next spinal tap for next Friday. Well, it has been a nice four month break and I am not looking forward to it at all. The only reason I am going along with this at all is because the CNS has the highest rate of failures beyond the 18 month mark. None of the systemic drugs enter the CNS. Things we do for Samuel do, things they do do not other than spinal poison. Thankfully for the clinic, they scheduled it early enough that it should not be any bigger PITA than our last surgery was. I think we have only two more years of these. Well, I hope to find a way out of that too.

Today is Delma's birthday. Of course Del is in heaven now, but she would have been 91 today. I spent some time thinking about her and realized that I haven't thought of her much in the last few months due to all the things going on here. I miss her so much still. Probably always will. I only wish she would have known me as an adult. Kaysha was five months old when she was born and while I was 23 at the time, I don't feel as though I hit adult hood til the late 20's. Probably a good thing she is not here. She would have been traumatized by my brother's death. She would have been torn up by all that has happened to Samuel. At least in heaven, she knows how it will all play out. She is happy, she is free, she is beyond our pain here. I wish I was too. You know, the happy, free and beyond pain part, not necessarily dead.

Delma never knew a stranger, lit up a room, always had something nice to say, and knew how to keep a secret to her death. She knew how to be your best friend, gave you everything her heart could. She knew that the material things of this world could never satisfy. She grew up with Jesus in her heart and wasn't afraid to tell you so. At the same time, she would not allow you to walk over her, she knew when to leave, she knew who was a friend to her face and an enemy behind her back. She kept up with the times and did not allow her age to factor in yet always told me to have fun while you are young because it is no fun to be old. She made it a priority to be at my wedding even though her body was falling apart. You could always expect an honest answer from her, about anything. She took care of herself, her looks, her clothes, until the end. In fact, she would not be happy with the picture of her I have posted at all, but it is one of the only ones of her and Kaysha. I just realized after looking at that picture that she too, preferred to bring her own pillow and pillowcase to the hospital rather than using theirs. She sang, she danced and her husband thought the sun rose and set on her, as she did him. Her marriage lasted until death and they were still in love at the end. She loved like there was nothing else in life to do. When we moved away she was always happy to see us visit and cried when we left. She instilled in me many of the qualities I like about myself today. Like everyone, she too had her faults and in the end it was her broken heart that killed her. She was never able to understand why or how her husband could die and leave her. I know that I would feel that very same way. She always had time for her grandchildren and we spent the night often. We got to do almost anything we pleased and were treated like royalty though they were far from rich. Kaysha was the only great grandchild she ever met. She was always afraid she would never meet her, thought she would die before then. But when I came into her hospital room and plopped her right down beside her, she was just beside herself. And Kaysha, being Kaysha, was all smiles, like she knew her already and had a very interesting vocab at 3 months. She told Delma, "hi." Samuel was named after her father. Kaysha's middle name is her Mother's name. Anna's middle name is Delma.

I remember as a teen telling her that when she died and went to heaven, that she should come to me in a dream and tell me she was there and okay. She was never afraid to talk about death or heaven, so she agreed that she would do it if she could. Of course, she never has...but I keep waiting. After she died for several years, I would dream the same dream. That she was just lost and we would eventually find her and tell her how awful it was when we thought she was dead. In the last months of her life, I learned several things. One, never second guess your gut feeling. I walked out of her hospital room though she begged me to say and had an overwhelming feeling that I should go back, it would be the last time I would see her alive. I had Kaysha, a three month old baby at the time with me, and my parents and did not listen to that voice. How I regret that. I have learned that regret is not an easy thing to live with when you never get a second chance. I remember my dad laughing and saying that I could not put my whole life on hold when she asked me to stay. Let me say that you can take a few days, weeks or months out of your life to do what your heart tells you to do. I wish I had. I felt literally sick to my stomach as I left that hospital that night. I wish my last memories of her were of the overnight stay I did with her in the hospital when she begged me to. No problem now, I am an old pro at that! But, I did not talk to her much after that visit because she was not home much. But two weeks before she died, she called me one night because she could not get a hold of my mom. We talked quite awhile and she sounded great, said she was doing great. That was our last conversation. A week later, she woke up in her home, did not know who she was, and died a week later from what they called "brain shut down." In the week after she woke up with amnesia, she did regain knowledge of who she was, but was never able to speak again. I called her the night before she died and told her everything you would tell someone you loved when you knew they were dying. I will never forget it, ever. The sound of her labored breathing, Me crying and trying to speak. My dad taking the phone from her and me telling him I wasn't done yet. Telling her I loved her, like 50 times. How I wanted to make her proud of me. I hope I have. Each day I strive to be more like her. God certainly broke the mold after making her. The day she left this earth marked a turning point in my life. I learned in one instant when you least expect it, everything you thought you had can slip right through your hands. The person you always thought would be there, left. I said goodbye, but not in the way I wanted to. I cried myself to sleep for weeks, and I could not function normally for about 18 months. Time heals, but oh, how I still miss here and wish I could just have her here for Thanksgiving dinner. Happy Birthday, Delma! Your legacy is far from forgotten. You are still my hero. You are my mother, my grandmother, my sister, my best friend and my mentor.

I have spent so much time this week thinking of all the things we don't have but need. I really need to be spending more time making what we do have work. Remembering Del has reminded me of that.

11/14/05am

Surgery 9am today. Pray all goes well.

11/14/05pm

Another long day, another surgery behind us. Things went well but it is amazing how a 30 minute surgery can end up taking ten hours from your day. We left at 6am and arrived home at 4pm. We are all so tired tonight!

We met the surgeon who had no personality whatsoever and as the NP who does know us said, it makes a difference when you have a long standing relationship with a certain surgeon. At any rate, first we were told the sheath would come out with the line and then the surgeon told us it would not AND the entire thing would have to be moved elsewhere. It is absolutely nerve racking to send your child off with these people. I cannot tell you how many scenarios cross my mind as we wait. It is obvious that others do the same thing. Mark said that the lady accross from us was crying and we were all DAY surgery. Not even the bad/complicated stuff, like being gutted or having your head drilled. We always try to make ourselves feel better remembering these more awful things we have had to wait out. But still, the VA operation that was cancelled and sent us to the ICU for a night is not far from my mind as we wait.

The 30 minute proceedure took over an hour and the longer you go past the estimated time, the more concerned you get. Finally the surgeon arrives to tell us he put the port in to the same spot as there was nowhere else it could go. Too much scar tissue on the VA side and they apparently tried to thread the line into his neck but none of those veiins worked either. So he told us he would not put it into the same place, but then did it anyway. Hmm. Supposedly it draws and flushes now. We shall see. I hope the sheath doesn't somehow reattach.

RN Julie came down from the Surgical Unit to see us. It is always nice to see a familliar face. Always nice to have someone check on you who takes someo of the tension out of the moment. We appreciate it. These RN's become a second family in so many ways.

So we waited another hour after seeing the surgeon and I was becoming concerned that Samuel wasn't back. That seemed almost worse than waiting for the Surgeon. A.D. was pretty awful the entire time, crying screaming and just plain loud and annoying at times. But I think she always senses the tension and feeds off it.

Finally a RN came in and asked me to go with her and again, I was allowed into Recovery. Parents usually don't go there so it is a luxury I don't take for granted. I wondered what was up but the RN there told me Samuel just woke up and they were waiting for X-ray to check placement of the line. He was happy to see me, but hoarse from the vent. Really hoarse. We got the X-ray and then had to wait almost another hour for someone to read it and okay it. It looked good so we were released.

So, we got labs today for the first time in three months and they are quite puzzling.

WBC 5700

ANC 1800

HCT 30 (low)

PLT 449K

We did not see electrolytes but after seeing his HCT so low, I would have liked to. Both of us expected all these counts to be higher as there is nothing going into him to lower them. WHile at the GI clinic, the dietician asked me if Samuel was anemic after I remarked that the dark rings under his eyes have never went away since the take down surgery. I did not feel he would be since he "looks" nice and rosy. But apparently he is. I don't know if it is a nutrient issue or a malabsorption problem now that he is hooked up. Or maybe he had already had some blood loss before they took labs, I don't know. So it might be a more accurate picture in a week or so. At any rate, someone needs to do electrolytes and check HCT so we can determine what the problem really is. It was never a problem previous to the surgery except for chemo, or back in Feb when his stoma closed down and he was unable to eat.

So maybe I will call and ask the GI clinic tomorrow, or maybe I will ask the ND, or both. At any rate, we will certainly be making some changes to address this.

Despite the long day, Samuel came home feeling well and played a long time before going to sleep. He hasn't ate or pooped much today so I hope I am not in for several surprises tonight. He has been sleeping through the night for the past few days. So have I. I don't notice it until morning when I realize I have dreamed about something. I haven't had dreams nightly for a very long time. Occasionally one here or there, but never night after night. And I am not liking them. They are usually bad. So maybe I need to go back to not sleeping well to escape my own mind.

Well, we are looking forward to some nice relaxing days at home. Thank you so much for the prayers and well wishes. Much love!

11/12/05

I got up today and realized that in two days we Samuel be going to surgery again. I just hate waking up to the countdowns. If you did not get the surgery news see 11/11.

Samuel has felt very well the last few days and his butt is almost healed again. At least he will let me clean it now which is a huge improvement. He has been happy and I just love the pic I got of him on the top of this page. When I think of Samuel before diagnosis, I think of the word happy because he was always happy. His temperament even now bends in that way unless he hurts. And even when he hurts, the minute he gets beyond it, he is happy. I hope it will always be that way.

Mark has worked the last three days and we all have cabin fever. It has just poured here and the yard is soaked. Our big outing will be the market and Walmart to get my new contact lenses. I cannot wait to throw the one in my eye into the garbage.

Over the last few days some people have sent me notes asking how they can help. I have updated Samuel's Page so that the information is current.

Much love!

11/11/05

Everyone is feeling better and thank God because I just got a call from the Surgery Center telling me that Samuel's surgery time will be Monday at 9am. We have to arrive by 7:45am. And it is not with our planned surgeon. Apparently there has been a change up. I just LOVE the no notice of any of this. since this is the first I am hearing word. Here I was planning to get something accomplished today but instead I have spent the morning mad about the communication, or lack of. You would think that we surgery veterans would just think this another one under our belt, but we don't. And honestly, I would like to know who is cutting on my boy before it happens.

Well, I need to go work now and try to get something done.