Samuel's Updates

12/9/06

Samuel is doing as well as can be expected given he is still so newly post-op and his butt is still understandably sore. He is having some issues with continence. As he says, "It was s surprise poop." Some slides through and suddenly he notices and is able to hold the rest til he gets to the pot. He is unhappy about being in diapers but does not want to poop in his underwear either. I swear if this ever becomes normal, I am buying him all new underwear because every pair he owns is stained and looks dirty even when it isn't. Being that they are all white, well that doesn't help much either. With diet, we have stopped the initial diarrhea and "fire poop" as he now calls it. His butt looks beautiful. You can now see an anus and normal looking anatomy. Previously, you just could not find it at all. It is our hope and prayer that his sphincter will regain it's tone and he will remain continent. Our ND feels like Samuel will be continent. As he says, things have just been changing so fast for Samuel that his body has never been able to adapt. Now, he will have the chance to adapt. It will certainly take us some time to adapt to not having his butt close up. He has been very tired so is taking regular naps and going to bed early too. Today has been the best day and I expect they will only improve from here.

He spent the morning playing with Anna. They played with all the dinosaurs and I thought about how glad I was for him to get his playmate back. At the hospital, on his worst day for pain, December 5th, he really wanted to play with his toys, but because he felt too awful, he wanted ME to play with his toys. So I colored in his coloring book, put together dino magnets and played with all his stuffed animals. He watched. That day reminded me all too much of certain ICU days back in 2004 when he was in pain that was not managed well enough and all he could do was lie in bed, tremble, pick his lip and try to distract himself with TV. Like those days, he was hyper sensitive to everything and even resorted to lip picking. I was already feeling used and abused but seeing that brought on some PTSD. Everything touching his skin was annoying and he wanted it off. It was a very long emotional day that brought back too many memories. I was glad it only really lasted 24 hours which seems like nothing time wise, but took forever to get through. Added to the list of days he has suffered without adequate pain control, it was just another one too many. I knew it would happen, I warned the doctors and asked them to have a plan ready, and what ended up happening was that we chased pain all day long. It is very hard to manage pain and catch up with it when it is out of control. Our RN from that night was shocked by the amount of pain he was suddenly in. I heard later that she told a lot of the RN"s about it and how miserable he was. They were shocked when two nights later, he was bouncing off the walls and we were being released home. That is Samuel. He defies logic. I hope that the Residents at least learned that they should listen to the parent, they might actually know what they are talking about. Might save them a 3am wake up call.

Overall, I am happy with the hospital there. Communication was certainly better although initially I was wondering if this might be a disaster. The majority of the problem was Levitt leaving orders and then leaving. Each day orders changed and one day the female resident told me it was kind of hard to follow orders when the doctor was no longer there. Getting released was a wonderful experience rather than the tug of war I am used to in Seattle. This was refreshing. I did not see the attending surgeon again before leaving but they want us to come back for post op 12/18 so I will be able to visit with him more at that time. It looks like the residents do not turn over as quickly as they did at Children's so should be need to be inpatient again, I think that we will be taken a lot more seriously when it comes to pain management. We will also not have a "visiting surgeon" which will help with the frustration immensely.

Some of the good things which came of the trip are the lessons we learned. Mainly, we are better off in the care of the people who have cared for us and know us. Our situation is much too unique and obviously easily misunderstood by the outsider looking in. More on this in a minute. We also decided on an area to relocate which will put us pretty much centered between Portland and Tacoma hopefully eliminating the need for Seattle's intrusion ever again. It also leaves us a decent drive from Mark's parents so the kids will not be deprived of their grandparents and vice versa. I know God has something in this area for us and we will find it when we are ready.

The surgical experience with Levitt was bittersweet. I was not prepared for how much this would affect me once I arrived home, but it certainly knocked the wind out of me. I assumed we would meet him prior to the surgery. Like when we were up in our room. We did not. I was called to surgery waiting and Samuel was put to sleep before I even knew what was happening. Once it was done, there was no turning back. Dr. Levitt was just finishing up his lecture and they had to go call for him several times to come out. Everyone was ready to go but him. He came in and greeted me and was very kind. I got the impression that Samuel was in great hands and for once, was not worried about him at all. He told me he was again honored to do Samuel's surgery and that he would look everything over and then give him whatever anus size was appropriate for him. Another surgeon introduced himself to me saying he was the one who organized all of this and I thanked him, then thanked them all. I was led to the waiting area where I basically read a book and happily waited for news.

Partway through the wait, I noticed a lady come in with her family carrying her baby in a wrap and I thought how cool that was and she walked over to see if I was Jen. Brought me coffee and lemon bread. It was such a treat! I was shocked. She spent some time visiting and helped pass my time. Things seemed like they were going well. Almost enjoyable given the circumstances.

I was called to be told they were closing up and things went well, then called 30 minutes later to go back into a private room for post op report. Both Levitt and the attending from OHSU, Dr. S. came. Initially, I was told about the surgery, the findings, the anus size, how to help reduce his bowel movements, and post op care. I could tell the atmosphere was different. Initially, he sat down next to me and talked to me like a friend. Now, he was talking down to me like I was an idiot. He finished up by stating that he never wanted to do surgery on Samuel again. So, we got through the post op stuff and move on to Oncology. Some direct quotes: "You OWE it to him to finish his protocol." "Until a trusted Oncologist that I know, or Dr. S. knows says you are done, you are not done." "I know that chemo caused this but you have to remember that it was actually an Oncology problem which got you here." "There are doctors worthy of trust. I feel like I am one. Dr. S. is one. The Oncology team here is very good, perhaps you should continue his treatment here." "I know it is a lot to think about right now." "When you were going to come to Cincinnati, I asked our ALL expert to see you to determine if you should be done." I looked at Dr. S. and he looked lost in the conversation. I was absolutely floored. Then he sums up everything by saying he knows NOTHING about Oncology. Well, obviously. When he started in about this, in my mind I distinctly remember hearing "Bite your tongue, you say anything now, it will be very bad." So the only thing I did ask was if they were unaware that I have an Oncologist currently. Neither of them seemed aware. I guess they just thought we have done whatever we want at this point. Obviously, he read the crap and the lies from the Medicaid file....and BELIEVED them. I told them we have done everything we could do, that all they have to offer us now is too toxic to Samuel's gut. That seemed to stop this conversation. And as if that was not enough, he then told me that he wanted me to realize how much work and time and effort was put into the planning of this surgery and how they did it to help Samuel and hated the bureaucracy behind all of it, especially WA Medicaid. It was a miracle that this all went off without a hitch, etc. It made me feel as if I was not thankful enough. Was I supposed to kiss their feet, cry, bring gifts? What? I have told this to several people who have all asked the same questions. I don't know what the deal was. Apparently, I am an idiot who is not getting my kid proper care and ungrateful as well for their efforts. I thanked them...again. I have already thanked Levitt in writing and by phone, several times. I thanked Dr. S. also several times previous to this meeting. Levitt's pager went off and he left at that point. I knew I would never see him again. I was right.

I went back to my room to call Mark. Absolutely floored and hurt. I would have cried but I was too drained to have tears. When you expect this type of treatment, you have your guard up but when it is the LAST thing you expect, it is like a knife to the heart. He helped Samuel. I will always be grateful. I feel like I was stabbed in the back. I guess the tears I was unable to cry there were saved for home. Samuel never met him. Other than the surgery, he did not give Samuel the time of day. Samuel does not know what happened to him. As far as he is concerned, his butt still hurts and he went to the hospital for nothing. Just like Seattle. We know different of course, but he doesn't. I wonder if Levitt asked that Samuel be sedated prior to his arrival so he would not have to "meet" him. I did not have huge expectations for this hospital stay, but I did assume Levitt would take the time to meet Samuel for whom he flew 2500 miles to help. I thought we would be treated like humans, not criminals. It is funny how my gut feelings about things are rarely wrong. I felt like I was going to jail before leaving for this trip and was indeed made to feel like a criminal on this day. We were also right in saying the only thing worse than going to Portland would be going to Cincy. Had I been stranded there, things would have been even more frustrating than they were here and you can bet we would still be there right now.

The next day, I told the Resident to call Dr. S. and let him know I wanted to speak with him asap. He did come in the very next day and noted immediately that Samuel was NOT feeling well. I have always gotten a good vibe off him and will always remember him stating that Samuel has a very easily fixable problem, why hasn't someone fixed this sooner? So, I told him again how thankful we were for the opportunity and that I would never understand the amount of work put into it, etc. I then told him I got the impression that I was not grateful enough the day before. So I asked him directly, "Was I not grateful enough?" He said he knew how grateful we were and apologized stating that he could see how I might have gotten that impression. I told him that I did not get it from him or his staff, I got it from Levitt. I told him that was NOT the case and he told me I did not need to say anymore, he understood. I then asked what the deal was with the Oncology thing and he stated that they just think it is awful that Samuel did not finish his chemotherapy. He asked if I wanted a free Oncology consult. I explained very briefly what we had done, that we have an Onc and politely declined his consult. I had to fight off tears several times and I think he gathered that my feelings were hurt by what had been said and kindly told me I did not need to explain myself any more. I told him that I got the impression that Samuel's surgery was going to be considered a waste of time if we did not finish the protocol and he said that was NOT the case either. Perhaps not for him. I will take him at face value because I think he is sincere and it looked like he was along for the ride in much of that conversation. So, things between he and I are fine. He did say that he was going to talk to Levitt and let him know my feelings but I have heard nothing. I did find out Levitt stayed was there on the 4th and morning of the 5th but I never saw him again. I have thought of excuses for him like maybe he was tired, maybe Medicaid kept calling him, maybe he was annoyed by the damage to Samuel's body, I don't know. But putting the entire scenario together, I just don't think this makes much sense. Something happened.

Following the surgery, the Residents treated me rudely. They were there during the surgery and I am pretty sure there were many conversations about us because obviously SOMETHING happened between when I met Levitt before and then conversed with him after. When I asked to be transferred to Tacoma, things began to change, orders changed and everyone got a little friendlier. It all worked out with OHSU but it was probably one of the most stressful inpatient stays ever. You can imagine how glad I was to see Mark and come home. I felt like I haven't seen my house in a week and was almost lost here. I have been trying to pick myself up and put this behind us but I am having a rough time with this one.

Yesterday, I called the ND to check in and let him know Samuel had the surgery and that we were home. When he called, I picked up the phone and said, "It is so good to talk to somebody who likes me." He responded, "I not only like you, I admire you. You have kept your son alive." Now, he had no clue about our hospital stay and issues there, but it was certainly a nice thing to hear after this week's events. I told him a little about things there and his comment was that MD's in general are afraid of things they know nothing about. If you say you are doing something and are confident in it, they just don't know how to respond. So they get defensive. I asked him if the MD's treated him as an equal and he said they did. So I then asked him if I became an ND, would they treat me as an equal then too? He responded that if I become an ND, I need to come work for him. That was nice. I am just so tired of being walked on. I also talked to Mary and let her know Samuel's surgery was done and what was said. She was appalled! No one can make heads or tails of it. She reminded me that our Onc will always support whatever decisions we make and that these people have no clue what they are saying because they were NOT there. This conversation should have never happened. It is the type of thing that you never forget and no words or apologies can take away. Nothing can make this right as far as I am concerned. I will forgive eventually and it will become a distant memory but it will most likely never be something I forget. I told both people we would come visit them in January. Right now, I need a break from everyone. Devastating! Absolutely devastating. I did not ask for this, would not wish it on my enemy. I have to say that I think Medicaid was more understanding of our decision to stop treatment thn Levitt. And that is saying something!~

I am going to try to get into the holiday spirit. We have done nothing. No tree, no gift buying, nothing. I don't even feel like it. I feel sick. Can I postpone the holidays for a few weeks? So that maybe I can enjoy them? Right now, things just feel ruined. Mark says focus on the positive and I am trying to do that. This is just not the ending I was planning on.

Everyone thought I should send a letter to Levitt with my thank you card. At first, I wasn't going to bother but it has bugged me so much that I did it just to help work it out of my system. I am sure this will be helpful to anyone new reading our story who also thinks we are idiots.

Dear Dr. Levitt,

Let me preface this by saying how thankful we are to you for your compassion for Samuel and giving him the best chance of being normal. IMO, he has a beautiful butt now. I know this surgery will improve all of our lives. I will never understand the lengths, cost and time it took for OHSU and you to put this all together but I do appreciate it more than words can express. I pray this surgery ends this painful era in all of our lives. In our brief conversation after the surgery, however, I got the impression that I was not grateful enough for all of this and that simply is not the case. If I left you with that impression, I sincerely apologize. I was operating on four hours of sleep and very little food as Samuel was NPO all day.

This entire situation has been a living nightmare. I guess it is inevitable that all the threads will become tangled, confused and the truth obliterated as more and more people communicate about Samuel due to the complex medical history and not having one doctor who has been with us the entire time. Having people lie about you is one of the most horrible things you can go through as a parent whose child has had this many life-threatening complications. I would think given all our family has been through, we would receive compassion before condemnation but apparently, I was wrong.

To set the records straight, Seattle saying I fired Tacoma after becoming unsatisfied with them is untrue. Tacoma transferred us to Seattle when they were unable to bring Samuel out of his hydrocephalus coma. Seattle saying I never canceled the anoplasty there is also untrue. I also never left there AMA though I threatened it on several occasions due to the communication breakdown between staff and the obviousness that they were not going to help Samuel. Seattle Children's IS fired. After being at OHSU under their surgical team, Seattle Children's should take a lesson. I will never return to Seattle for any General Surgery needs because the staff in OR were so great. Seattle was not able to recognize the fact that they did not help Samuel and therein lies the problem. I am thankful, however, for this situation leading me to find Dr. Silen and his team. We now have a reliable place to get help should we need it again. Dr. Healey states that we have not listened out our Oncologists recommendations which is again, untrue and interestingly enough, most of the lies came out of his mouth. Samuel has had three oncologists to date. Two in which we trust, and one we don't. I got the impression from you that this surgery was a waste of your time if we chose not to continue conventional cancer treatment. Your naivety about Oncology and what it has to offer Samuel has minimized our tragedy and deeply hurt my feelings. Of all the people I would have expected condemnation from on this, I did not expect it from you.

After Samuel's extreme amount of complications and surgeries, we had some doubts as to whether or not he could continue chemotherapy at all. We were concerned about our overall prognosis already being off the protocol six months. We contacted many Oncologists for opinions and were willing to move to New York MSKCC if the top ALL expert there, Peter Steinherz would take us on. Our hope in sending him our records and having our Onc at the time talk with him, was that he would have heard of these complications before and be able to either take us on or offer some help to our current Onc. This was his response. "You can't just pick up and move with four kids, so you need to work with your local oncologist as best as you can. Your son's problems are very rare and your physician is steering you through uncharted waters." He ended his call with our Onc saying "Good luck." It was absolutely devastating. The top Onc did not want us. I realize why...now. We then got several more opinions from an ombudsman service regarding protocols and where the best place for Samuel to receive further care and everyone agreed that it did not benefit us to move anywhere else for treatment as ALL treatment is the same everywhere. They also agreed that Samuel may not be able to tolerate the protocol as it was. Here are just some quotes we received.

The 1961 protocol may be one of the best but that does not mean that this child will be able to tolerate it. The art of oncology means taking what the individual patient's body will allow you to get away with and knowing when the risks outweigh the benefits.

There are many individuals who are very capable of delivering the needed care.

Ultimately the parents have to have a moderate amount of confidence in their child's physician and the physician has to recognize when help may be needed. I rarely recommend that families move from their support systems unless there is a treatment that is available only in one place.

There are too many variables to speculate on a prognosis. I would concentrate on giving this child the best care that he could tolerate for a durable remission.

Every patient is "unique." Some (like Sam) are more complicated than others. Complicated does not correlate with prognosis.

We worked initially with Dr. L in Tacoma, then transferred to Doug Hawkins, at Seattle Children's and Samuel got as much of the 1961 protocol there as he could tolerate. It was not easy and resulted in further complications of the gut. Dr. Hawkins was a caring compassionate Onc who proved himself worthy of trust from the day he met us. He knows we are done with treatment and he understands why. He was there and had to pick up the pieces of an induction month gone very bad in 7/2004. We transferred our care back to Tacoma, to Robert Irwin last December 2005, when it became evident that Samuel was never going to poop less than 10-20 times a day and a 1-2 hour drive each direction was not feasible. The staff in Tacoma know us very well as they were there when all of this tragedy began. Dr. Irwin is a compassionate caring man who agreed to take us on and find better tolerated treatments for Samuel as well as continues to pursue non-toxic clinical trials. He supports our decisions 100&.

In February, it became obvious that even one dose of chemo was like a kick in the gut that took two weeks to overcome. If Samuel were in treatment today, he would be in Long Term Maintenance. The drugs used for this are repeated on a monthly basis. The first drug, Vincristine, is given IV once a month. This drug causes Samuel gut to completely stop working for a period of days and takes two weeks to recover from. It also causes severe abdominal pain in which he just screams for days. This drug has not been used since 12/04 because we and Dr. Hawkins determined the GI toxicity too severe. The next drugs which are given five days a month are steriods. Dr. Steinherz linked steroids to GI toxicity and the cause of his typhlitis but also to his hydrocephalus. This drug has not been given since induction for this reason as Dr. Hawkins agreed with Dr. Steinherz. The next drug, given weekly, is Methotrexate. This drug caused two weeks of diarrhea. And the last drug, given daily, is 6-MP, which also caused diarrhea. Last, but not least, IT chemo is also used once monthly. Either Methotrexate or ARA-C. Since Samuel is shunted, this medicine while injected into his spine, is then dumped out his shunt back into his bloodstream reducing it's effectiveness. Once in the bloodstream, they continue to reek havoc on Samuel's GI tract. All of these drugs keep the immune system depressed thereby limiting Samuel's ability to heal. We have tried half doses and even quarter doses of these drugs and still have GI toxicity. The protocol is not considered effective if the drugs cannot be given in combination so it is useless to do just one thing. All of these drugs together mean no quality of life for Samuel. One of these drugs means no quality of life at this point. There is not one medication left in this protocol which is considered well-tolerated for Samuel. We and our Oncology team decided that Samuel's body cannot take any more. Normally kids in the phase tolerate it well with literally no side effects. Everything attacks Samuel's gut. I think you saw this for yourself.

You do not simply "walk away" from your Oncologist with pediatric cancer. A lot of things have to happen, bad things. A lot of trial and error, and in Samuel's case, torture. It took months to make the agonizing decision of stopping everything and it was not taken lightly. We are clear in our decision as is our PCP and Onc. I owe Samuel quality of life and nothing less. He IS receiving cancer treatment, just not conventional. And whether you subscribe to it or not, he remains in remission to date despite all the treatment delays initially and being off all major treatment for now over a year and a half. With each passing day of remission comes a better overall prognosis. I owe Samuel the right to body integrity, at least what is left of it. If Samuel should relapse and die, I want to look back and know that I did not make every day miserable with chemotherapy that just wreaked havoc on his gut. I want to look back and know we gave him the best quality of life we could. He deserves a life. Finding you was a large part of that. Thank you for helping Samuel. It was not a waste.

I am sure from the outside looking in, most will never understand our choice and I will have to deal with condemnation for the rest of our lives. I am also certain that I would have no problem finding an Oncologist who would be happy to put Samuel back onto a protocol which would make all of his days torture with a gut tied in knots probably resulting in more loss of it. A lot of Oncologists we have met seem to have a different idea of quality of life than I. I am not a selfish enough parent to put my child through any more chemotherapy to appease anyone. We have no guarantee of cure, but instead guarantee of misery. I cannot and will not do that to him. As our Onc agrees, it is NOT okay to fix the problem just to make it worse again. I would never forgive myself if Samuel lost more of his gut, or another organ. Samuel has spent every day since April 21, 2004, in pain. There has not been one pain free day and only a handful of days that I consider good. I now understand what Dr. Steinherz meant when he said stay where you are and work "as best you can" with a local Oncologist. I imagine most of those Oncologists did not think he would live that long given the complications and treatment delays. . Dr. Hawkins has told me several times how amazed he has been all this time that Samuel remains in remission. It is just unheard of. It all is. Obviously, you just have to live the nightmare to understand what we have been through.

Walk a mile in my shoes, if you will. While you might know what it is like to have a surgeon taking care of your child, you do not know what it is like to be there for failed after failed attempts to put his body together again knowing that the cause of it all, chemotherapy and the threat of relapse was still before you. You do not know what it is like to have your child diagnosed with cancer and then watch as every conventional treatment destroys his body. You do not know what it is like to have your child beg you to help him and be helpless in taking the toll of toxicity away. You do not know what it is like to have your child tell you he wishes he could die because the pain is so great and never goes away. You do not know what it is like to be lied about and condemned by people you have trusted for making a choice that most MD's do not agree with. Maybe you do know what it is like to have someone walk all over your feelings because they did not take the time to find out the whole story and as a result, made inaccurate hurtful assumptions about you. Need I go on? Samuel did not get cancer from a chemotherapy deficiency. Maybe once researchers realize that, they will be closer to a cure. If you should have any further questions or concerns about Samuel's cancer care, I welcome you to contact either Dr. Irwin (253) 403-3482 or Dr. Hawkins (206) 987-2106.

Samuel is a happy well-adjusted lovely boy who steals your heart with his smile and charisma. I love all my children dearly but the sun rises and sets on this child. He was looking forward to meeting you and even knew your name which is a step up from "the butt doctor" which is how he referred to Healey. I included his picture taken on the sky bridge the day before you operated on him so you can see what he looks like awake and happy. He asked about you all that night and the day of surgery but I guess you were too busy to meet him. I regret that most.

I thank you for your compassion and willingness to help Samuel. That day will never be forgotten. Neither will the compassion of the OHSU staff in facilitating it.

Sincerely,

Jen Backus

Mother to Samuel

12/7/06

We are safely home.

12/6/06

Change of plan. Samuel started pooping yesterday night. All bets are now off. The NPO status has rapidly changed from clears to food. He can now eat whatever he wants. He doesn't know it yet though. He is sleeping currently.

Today I have an oncology RN which has been a treat simply because they are used to parents who do everything and don't need RN's to stand around doing it all or policing them either We had our RN from the night before again last night so finally some continuity of care. Samuel and I each slept 8 hours last night so today feels like a new day instead of the same day for three days in a row. He woke up pretty happy and is now off all narcotics and most of the pain meds. Thank God, thank you all for your prayers. Things have certainly turned around.

Today, he has played in the playroom for an hour and we took a walk and a shower. Currently he is passed out.

They pulled the foley today as well as took him off all monitors.

Last night shortly after I posted the update, he told me he had to poop. I was under the impression that he wasn't supposed to be pooping so I asked him If he was sure. Well, he was and he did. Then he pooped again later and has gone several times today. The resident who has warmed up nicely told us he could have popsicles after seeing the large puddle on the floor in the bathroom and Samuel sitting on the pot. There is no modesty here. So, Samuel was pretty happy. He woke up today saying he wanted to go home AND eat. Later they ordered him clears and so two trays have arrived for him and he has actually tried all the food. The NP just came in to ask about us wanting to transfer to Tacoma and I told her that it seemed everything is moving ahead of schedule now and if Samuel was no longer NPO, it just did not matter. Obviously we will be leaving sooner than seven days. By the way, they forgot to order TPN so it was never started last night. Good thing now. I told the NP that from the day Samuel was born, he was nick named Pooper. So it figures that even if you don't feed him, he still poops. She asked me if he wants to eat, if I want him to eat. I of course said yes. So she okayed him to eat whatever he wants and had food sent here immediately. I also just ordered him dinner which was more appropriate than what they sent. If all goes well tonight, they will release us tomorrow. Can we all say YEAH to that! I don't anticipate any problems as what we are dealing with now is nothing compared to what we have dealt with in the past. As you might imagine, we are all thrilled at the news. It will be so much easier to tell how life with the new butt will be at home.

I have been impressed with the Surgery Team here as far as how often they come around. You see them several times a day, not just once early in the morning and they are gone never to be heard from again. I knew coming in that the pain issues would plague us as well as not having staff who knew us.

Bottom line, hospital life is NOT for me. We cannot wait to go home and by the sound of home, they cannot wait for us to get home. Anna asks for us each day and I know she cannot wait to get her favorite playmate back. I cannot wait to see them. Some funny things have happened while we have been here. On the surgery day, when I had the "experience" with Levitt, Mark had a headache from mid afternoon to later in the eve. So about the time it happened to about the time I was getting it out of my system. I should have had that headache especially based on the last few months of dealing with the crap and stress headaches. Also, about 6:30am yesterday, Mark woke up hearing a hospital door slam. Of course he was dreaming, but that was about the time the stupid resident was in here annoying me with her shrugging shoulders and lack of knowledge. Mark and I have always shared thoughts and seemed to communicate without communicating. We always know because one of us will say exactly what the other is thinking and sometimes we can call each other, say Mark is outside and I am inside, I will think about calling him in and he shows up wanting to know what I want. Interesting, eh? I haven't been eating well, he hasn't been eating well. He has no excuse since he is home but I guess it is just the empty nest feeling on his part. My life and my loves are at home, waiting on Samuel and I to complete the circle and we cannot wait to rejoin them and go about the holiday celebration.

On the homefront, the dryer man showed up but did not have the right parts. He did not even take the dryer apart. He just ordered one of everything and now is coming back NEXT week to install it all. Oh, I am glad I am not paying for this. So now we have yet another week with no dryer. I guess I should do all this poop laundry here. I am sure they would ALL appreciate that.

Last night I was feeling like Samuel is still going to be continent based on him being able to hold the watery poop long enough for two RN's to arrive and help carry everything to the pot. Today, he has had a few accidents but then manages to hold the bulk of it til he gets to the pot. Being hooked up to IV's it is not as easy to get there fast. I think he is going to be fine. His last antibiotic dose is at 3pm and I cannot wait for it to be done as I suspect that it is reeking havoc on his gut causing the most awful diarrhea and mucus. It stained their tile.

I am mostly over the Levitt thing, not just that he did not show up, but what was said. I will share that later when I am home on my own computer. The lap top is not easy for a blind person to use, hence the typos. Either I can read it and not type, or I can type and not see it. Perfect. Much easier at home.

The attending surgeon we have had who helped coordinate this has really impressed me thus far and I think any further surgical needs in the general area Samuel might need, we will come to him. I was thinking last night that I would just introduce HIM as the butt doctor and tell Samuel that he fixed his butt so that he will at least understand that he has a doctor and we are not just here dealing with the same exact thing we always do, a sore butt which no one knows how to fix. I don't know if he will come round before we leave at this point though. We shall see. At least that would give him some closure. He still will not completely understand but at least he will know someone took care of him while he was here.

I have read and heard so many people rave that Levitt is their child's favorite doctor and am sad that I did not get to experience this first hand if even for the five minutes it would have lasted. But in light of what was said, I wonder if he intentionally did not meet Samuel awake because he did not want to meet a child he thinks may relapse and die. Spare himself from caring too much. Samuel is a miracle and if he did not want to experience this child in all his glory, HIS loss. We are fine. I hope we are done with it all and never have to revisit this part of our lives again. But if we do, it will be revisited here in Portland, NOT Ohio.

Thank you for your love and support. We appreciate you all so much.

12/5/06PM

They just brought me a big pile of e-mails from you all. Thank you! Things continue to be frustrating here.

It has taken all day, and we have been up since 3am, to get ahead of Samuel' pain. I asked and asked the Surgery team to make a plan last night, and since they did not, the resident had the pleasure of being woke up at 3am to make a choice then. I asked for certain amount of morphine, and got it, but it was too late ad now we have spent the day chasing pain instead of managing it.

Praise the Lord, I had a good RN last night who should be back tonight and a good one for the day today. They gave me a sheet to write questions for the doctors on so I made them a HUGE list. Number one, we want to transfer after surgical pain is minimal. Haven't got an answer on that one. A social worker was here today so I asked her to pursue this as well explaining our situation and reasons why I want to move back. Hopefully I will know more tomorrow.

I had a rather heated conversation this morning with a resident who looked over my questions and gave me curt yes or no answers with no explanation. When I asked for explanations, she shrugged her shoulders, several times. I told her that if she did not know, perhaps she needed to send in someone with a little more knowledge.

One of the biggest problems, now resolved, was the NPO status. Nothing by mouth for seven days. The first thing Samuel asked for was water. The breathing tube was not kind to him this time and his voice is scratchy and his lungs are a bit junky. I asked the RN in recovery what would happen if he had an "accidental: drink and she said nothing. So he had one but not before our RN saw and reported to the Surgery team who was five minutes in hot pursuit. They were adamant about it last night I wrote on my list that he should be able to at least have ice chips. The morning resident said no and this was one of the things I questioned her on and received the shrugged shoulder answer. I told her that not allowing him to rinse and moisten his mouth was cruel. Made no difference to her.

Later the resident who we woke at 3am was in and I went over the list with him and suddenly he was more accommodating. He was the one who got after me for this last night, today suddenly it is fine. So Samuel can have sips and ice chips. But of course, he feels so defeated today that he doesn't want anything. He hasn't asked to eat or drink today at all. Some of his comments were that "it's all my fault' and "I just want to die." I at least corrected him to say that it is all the doctor's fault.

Yesterday was miserable. NPO all day and he was asking to eat and drink. Post surgery was miserable with him begging to drink and then vomiting several times. Not the sip of water but bile instead. Luckily that passed. I was called to recovery to console him again before returning to our room. I guess he was so angry when he woke up that they gave him Versed. Versed is the drug we have requested they NOT use because it makes him so angry and unreasonable. So the RN was not happy when I told her that. I never mentioned it because they usually premedicate with it, not post. So I never even gave it a thought. It is now listed as an allergy for Samuel. So, that was not impressive at all!

Today has been miserable, as I mentioned already. I think we might be just now into a good place. Samuel is coloring and sitting but ultra sensitive to everything and "acts" like he has been given versed even though he hasn't. I think it is sleep deprivation and starvation. TPN is supposed to arrive tonight and hopefully this takes the edge off. That and sleep.

All the surgeons here were apparently under the impression that this surgery is minimally painful and a snap to recover from. I asked that the Pain team come right away this morning. They did and came up with a plan, which unfortunately was not implemented til tonight at about 5pm. I talked to them at 10am. I guess they just write a plan and submit it to the surgeons and the surgeons have to approve it. FRUSTRATING! In Seattle, when the Pain team comes, they take over pain management and you don't have to wait all day for it. There are many pros and cons to each of the hospitals we have been at, that is for sure. I hope we are on top of this and can sleep tonight. I have had about three hours sleep in the last 36 hours and it is NOT enough to stay sane.

The surgery....big long sigh. The surgery supposedly went well. Samuel's mucus membranes are still scarred and damaged from chemo. His rectum is short and he has no colon. Yesterday I was told that unless we can be sure his sphincter is okay, continence may be a lifelong issue. I reminded them that he WAS continent before the surgery and also after the largest dilation. They thought that the stricture may have been part of the reason why this was so. Time will tell. We will also have to pass a dilator every day for six months to be certain that it is not getting smaller. It should pass easily and should not hurt. Then taper to every other day and so on.

There were many disappointments yesterday. It was NOT the dream come true I had in mind. Dr. Levitt never came to see us before the actual surgery time. I met him two minutes before. They had to pull him out of his lecture because everyone was ready and waiting and he was not there. To my dismay and before I even knew what was happening, the anesthesiologist put Samuel under BEFORE Dr. Levitt even met him. Dr. Levitt did surgery on a dead person as far as I am concerned. He never saw him post op to meet him either and I have heard there was plenty of opportunity. He came here to do Samuel's surgery and the lecture and he was gone. I would have thought that if you came all the way, you would have wanted to "meet" the patient, but I guess that was just not a priority. He came here to do a job and I guess Samuel was just another chart. I am absolutely and completely disappointed. What I am most upset about is that Samuel came here to see the NEW butt doctor and get his butt fixed and he never even met him and will never know who fixed his butt. He doesn't understand. He is still waiting for someone to fix his butt. He doesn't even get that it is done. And there is more but I still cannot believe it and cannot even record it. I am waiting to see if it gets resolved before going into details. I have resolved the issue with the Attending here and for him it was NOT an issue but he understood my concerns and was going to speak with Levitt about it. No words will ever explain why it was not a priority to meet Samuel. Levitt is a person with an outstanding reputation with families and is highly raved about, so I just do not get it. He came all this way to do the surgery and for that I will always be grateful but I will never understand what took place here yesterday. I feel sick about it. Maybe it is just lack of sleep and a child who has been inconsolable all day who thinks this is all his fault and wants to die. Maybe it is just that.

12/5/06am

3am hit Samuel with pain fast and hard. It has been a miserable morning. Now they are concerned he is not peeing enough, even with the Foley in place. Apparently pain control is going to be a major problem here since he has now had 2mg of morphine and it is barely touching it. Please continue to pray.

12/4/06 11pm

Surgery is done and it has been a long day...getting longer as I write. Samuel is doing great post-op after a few little speed bumps at first. His anus is now a 17 and I have the pictures to prove it. The surgery went well and the plan tonight is that he be NPO for seven days. Seven days on TPN, and so far he is feeling amazingly well after surgery with normal heart rate and everything. He is sitting. Of course, he stuck his hand into his butt an noticed the sutures right off the bat. He is not as impressed with the Foley either. Overall, the day has been long with several disappointments that I intend to get to the bottom of, excuse the pun, soon. I think I am going to insist we be transferred to Tacoma to finish up TPN if after the next couple days things are going well. I don't think I can do another seven days here after today. It has become very obvious that we need to be cared for by people who know us and be reunited with our family. At least in Tacoma, my family can visit everyday and the staff know Samuel very well. It is just too hard to be stranded here with no continuity of care and no advocates to rely on.

Thank you for your prayers! Special thanks to Miranda for your surprise visit and special treats. I enjoyed meeting you. It was truly the highlight of my day.

12/4/06 6:45am

Well, we have been up since 4am. I am not a morning person EXCEPT when at the hospital. I have already been down to Starbucks for coffee which will equal breakfast. Samuel cannot eat for the day. He has been NPO since 5am. Now they are saying surgery is not until 1:30pm. UGH. This is going to be a long day. Surgery team has been in but they seem to not know much. Haven't seen or heard if Dr. Levitt has even made it. Anesthesia came through and we discussed pain management. They are going to give him a shot localized into his backside somewhere which will give him 24 hours of numbness. And some localized morphine as well. I alerted everyone to his previous morphine addiction and tolerance and the Pain team will come by later as well to be sure we are okay. I also requested he come back with a Foley so I don't have to worry about that post op He can just come back and rest for the next 24 hours.

He is currently hooked up to IV fluids but I am hoping we can unhook and go play to pass the time here this morning. We like to go exploring and this hospital has some really cool things to see. We trekked the skybridge last night Someone told me is a a quarter mile long, but after walking it, I think it might be a quarter mile if you walk it back and forth. Did not seem that long to me.

Gut cleanout went fairly well. It is not pleasant, but the process did not break out his skin or make him scream. That waited for this morning. Apparently here, after cleanout, they like to push TONS of antibiotics afterwards. So the poop I saw today looks like yellow mucus, and it burns.

Samuel got pretty tired after our walk last night and ended up crying himself to sleep. He is hungry and wants to go home. We have talked about him getting his butt mixed and he is concerned about where I will be when he is in surgery and if I will be waiting for him. As you might expect, we just want to get it overwith. We appreciate your love and prayers so much. More later........

12/3/06

Greetings from Portland. We had an uneventful drive here and Mark is safely back home. Thank the Lord! Samuel is well into his GI clean out and it is going well so far. Not too terrible....yet. You see from the pictures our little room. Key word OUR. Not shared. Small, but ours. It is only 5:30pm but time sure seems to be passing slowly!

The IV therapist LOVED Samuel and told everyone on her team about how cute he is.

His labs are great. Haven't seen them in two months..obviously we do not worry much about them these days.

WBC 7.4

HCT 34.3

PLT 389k

I haven't seen Dr. Levitt as of yet. The plan is gut cleanout, clears til midnight and then IV fluids until surgery. Just a waiting game. Samuel is trying out al of the popsicles available currently.

12/2/06

It is 8pm but feels like 10pm. I should go to bed. Kaysha, Daniel and Anna are at Mark's parents for the night. I am just about done packing, just a few more additions in the morning. I am trying to be positive about this upcoming stay, but to be honest, it is proving rather difficult. Saying goodbye to my kids for an undetermined amount of time sucks. Leaving for an undetermined amount of time sucks. At least previously, the kids and Mark could come visit us, but this time we will be too far away. Being stranded in a hospital sucks. Knowing Mark has to drive us all the way there, just to turn around and come home alone sucks. The whole thing sucks. I almost feel like I am going to jail or something. Really! Had this last year of horrible events NOT happened, I am sure I would feel quite differently about this. But it did, and the wounds are still fresh. Even though this is a different hospital, and different doctors, etc, I just cannot get past what we have endured. It is hard to imagine the amount of people waiting with baited breath wondering if Samuel will have the surgery, hoping he does, not because it will help Samuel, but because it will mean they don't have to work on fighting us anymore. Mark and I talked tonight and agree that the only thing that would be worse than going to Portland would be if I had to go to Cincinnati. Then, I would really feel sick. I only feel unhappy currently, not to the sick feeling yet. I will feel that way tomorrow when I say goodbye to Mark knowing he has a three hour drive home and we do not know when we will be reunited.

The nice thing about the last two plus years is that we have been able to be together for most of the hard stuff. Sending your kid off to have his anus sliced open, rectal skin pulled through and sutured back on is quite a lot to fathom while you are waiting alone the two hours it takes to get through. Then you have to wait another two hours to even see your kid after. At each of our previous hospitals, we have known people. My RN's were my friends and certain social workers were also. It is just such a difficult thing to send your kid off alone and then be alone to wait. Mark could stay for the surgery, but we simply cannot afford it. and in the grand scheme of logic, it just does not make sense. Plus we cannot leave the kids with his parents for that long. None of this has every been easy. Certainly I have said goodbye to Samuel and sent him off to surgery with Anna in tow. That was not easy either. Taking care of two babies was just one of those nightmares I will never understand how we got through without going completely crazy. I am glad Samuel does not have to ponder this. He thinks he is going to see the NEW butt doctor, and he is only going to look and not touch, then magically fix his butt and then we come home. He is so excited and thinks this is going to be loads of fun. I guess I should be happy that he feels no contempt toward hospitals, doctors, and caregivers. Wish I could say the same and feel the same.

They are going to think we are crazy when they see our baggage. It has been over a year since I planned a stay more than a few days inpatient, but I have certainly learned the keys to survival. Clean clothes. Warm clothes and your own pillows and blankets. I even remembered to pack toilet paper. Theirs is so rough and scratchy that even my butt got sore. Imagine how poor Samuel will feel!

I did find out the surgery is planned for Monday at 1pm. Apparently Dr. Levitt is giving a lecture beforehand. I am sure this is great for all the doctors attending the surgery, but not so great for Samuel who has grown quite accustomed to eating again. He will be doing gut clean out tomorrow and then probably on clears or TPN after that. Yes, I wish I was coming home tomorrow, not leaving!

We appreciate those who have sent well wishes and prayers today. Thank you! Please pray for our safety, for Samuel as he endures surgery #20+, I lost count. Pray for favor for us, and that this is a good experience. One which helps wash away the bad ones. Pray for my kids as they spend the week with Mark. Anna will really miss us for sure.

Until tomorrow.......much love!

11/29/06

Samuel will be admitted to OHSU Sunday at 9am. We will leave early Sunday: Mark, I and Samuel only. Mark will stay long enough for me to orient myself with the hospital and where everything is, and then head back Sunday afternoon. It will be a long day for everyone but there just is no other way around it. Kaysha, Daniel and Anna will stay at Mark's parents until Mark arrives back which will make it easier for us to do what we need to do when we arrive. Surgery Monday.

I am glad I dumped my worries into the last journal because God has really changed things here. Samuel is doing great! We think that possibly the scar tissue stiffened up for a little while and has softened again because he can eat, poop and just do whatever he pleases. He is happy. I would count good days again, but still trying not to jinx this.

So, you will never guess who called today? Medicaid. I guess he wanted to know if his attorneys should get busy or not. Well, he did not say that, but he just wanted to know if we were all set and if there was anything he could do. So, Thompson, if you are reading, I would say you have done enough. With friends like you, who needs enemies. No, I did not call him back. He can just wonder. I am sure there will be plenty of phone calls to OHSU come Monday. All these "helpful" people wanting to know if they have to work.

I figured Dr. Levitt might be wondering how Samuel is since he hasn't heard from me in over a month now and certainly he has received the attorney's request for him to testify should a hearing be needed. So I sent him a quick note today letting him know all is well and we would be there bright and early Sunday for "bowel prep." And Samuel thinks this is going to be fun. Dr. Levitt says he is looking forward to his trip and meeting us. I have been praying for favor here especially in light of how awful our last few admits have been in Seattle. It still seems surreal that this day is finally almost here. We have only been waiting since May you know.

Samuel sat up with the kids to do his first day of school, which basically consisted of handwriting. He wrote and Kaysha and Daniel were just mesmerized. You would think they never saw anyone write before. And as with all of Samuel's firsts, picture taking was in order. We did learn something. He is RIGHT handed. Not left. We have thought all along he was a lefty. Kaysha and Daniel are lefties. Mark is a lefty. Well, I guess it is even now because Samuel, Anna and I are all right handed. That means teaching them to write will be much easier FOR ME. Mark had to help Kaysha and Daniel. So, Samuel did really well and I expected nothing and was just fiddling around but now he wants to get his book out with Kaysha and Daniel every day. He asks. So we might take them along to Oregon if he is up to writing.

The weather here is supposed to improve this weekend. Sun and warmer. Currently we have snow and below freezing temps. The hill which saved us from the flooding is now treacherous due to being solid ice. So we have been playing it pretty low key. The kids are enjoying the snow. I don't care currently as I am just too busy getting things done before leaving. I will spend the next few days packing and deciding what creature comforts we need to take, etc. I have done a great job keeping myself buried in work over the last few days that I have been able to keep my mind off the surgery. I swear I do this everytime something big is planned. So it is a relief tonight knowing most everything is done and it is just a waiting game. We continue to pray for good weather for traveling for all parities, favor while there and of course for this surgery to be the end of this miserable era in Samuel's life. A new beginning. Maybe someday we could hope for a life again?

If you have any spare prayers to offer, can you pray for these two boys? Donovan.

He has relapsed leukemia again. This is the fifth time! This is just devastating news after everything this precious child and family has been through. Ellis just received a new heart and his body is now rejecting it. His doctors are trying desperately to save his life. Little boys in the two year old range just steal my heart. Both of these boys need miracle touches from God. These children remind us just how fragile life is, one moment can change your life forever. Cherish everything you have today because those memories may just be the ones which carry you through rough unfathomable times. Much love!

11/24/06

Thankful: feeling or showing appreciation, grateful.

Since Samuel's diagnosis, each holiday, birthday or anniversary of whatever, I look back to the previous year, and the one before that, and revisit life back then. Two years ago, we had only just figured out that Samuel's anus and rectum collapsed. Only because it burst open after what seemed like three days of childbearing labor for Samuel. The torture of that was so unbelievable, so awful, and yet, there was still more to come, worse to follow. We had no clue. We thought that his anus opening up was a good thing and the end of that torture. Little did we know, it was only the beginning. Last year, Samuel was still recovering from his ileostomy take down and while Thanksgiving seemed magical, life was anything but. And even then, his anus was closing down...only we did not know it because we believed it was fixed due to being used. Now some two years later, it is still NOT fixed and still a nightmare to live with. All of this makes me wonder what we are going to look back upon next year and say we had not a clue. I am thankful that this era of Samuel's misery will be ending soon....and I pray that is so and this surgery does not open up a whole other can of worms. I am thankful for Dr. Levitt and his willingness to come here to help Samuel. I pray he is our miracle that ends the suffering for good. I pray this also ends the nightmare we dealt with with Medicaid, hospital bureaucrats and everyone else who is only in it for the money. I pray that someday, that bad taste in my mouth will be a memory. I would hope that someday the good things will outweigh the bad ones but for now, my uneasiness with hospitals, MD's and bureaucrats just continues. Guilty until proven otherwise is how I feel about them currently. It is s sick thought to think that if Samuel is unable to have this surgery done on December 4th, we will have to fight for the right to have it done in Ohio and no one will care about anything other than the revenue from this surgery leaving the state. I will be thankful when this is all behind us. This is one chapter I want to shut the book on and throw away the key. I actually lost all the documents from the attorney's office in regard to Medicaid's decision making process. Other than the notes I scanned, the package has vanished! I don't know if I subconsciously threw it away or just misplaced it.

This upcoming surgery is quality of life for Samuel. It makes or breaks it. Probably the most important surgery to date only overshadowed by his VA shunt, you know the one which actually worked? The VA shunt that worked WAS life. That gave him back his life. But if that life was given back only to be riddled with pain and suffering, what good was it? This surgery means everything.

The last few days, if not week or so has been filled with uncertainty more than thankfulness. Suddenly, everything seems like it is up in the air. Every funny cough or sneeze grabs my attention and I wonder if it is something....or nothing. Samuel continues to poop, which is good, but the consistency of it is not right, which is bad. His skin is still red, raw and irritated and he is still begging to see the NEW butt doctor. He is begging for someone to fix his butt. I am thankful that this is only a bit over a week away, not three months away. It was so hard three months ago to explain to a 4.5 year old that he had to wait THREE months when all he did was scream and suffer and starve. I am thankful that this situation is much more livable, yet it is still not wonderful. I still worry, check poop and wipe a sore butt several times daily. Worry more than several times daily. I check what food he ate, logging it in my mind and estimate the time it should take to exit should it do so correctly. And then think about the steps I need to take should it NOT exit. Things are okay, not ideal and I am certainly NOT counting these as good days. Yet, I am thankful that he is not spending each of these days in torment. Things could certainly be worse.

Thanksgiving was nice, not magical, but overshadowed by an uneasy feeling of the uncertain future. I set a place for Samuel at our table this year. I did not bother last year, or the year before. He sat up, he did not eat, which was expected. But he at least felt like he was a part of it. He did participate in the Friday after Thanksgiving French Toast and ate the whole piece I think for the first time ever. So that was good and I am thankful that sitting up to the table this year is not as foreign a concept as it was last year for Samuel. Two years ago, the only things he would put into his mouth were chips and crackers so we have come a long way. Still have a ways to go.

We spent last Thanksgiving fixing the oven which had an element burn out and ended up swapping the top good one to the bottom since no one was open to get a replacement. We spent this Thanksgiving fixing the venting from the dryer to the outside. Unfortunately, the fix it man came, found NOTHING wrong with it. Well, I beg to differ. He could not get it to stop working while he was here or get an error code. But of course, yesterday, we got the error code for it. Only now they cannot come back out until December 6th. And the dryer kind of works so you can partially dry things and occasionally completely dry things and sometimes it just refuses to work completely. But on the flip side of this annoyance, apparently I DID buy a service contract and it is covered until late next year so we won't be out the repair money. So yeah to me for buying that! It just paid for itself as we bought the contract at a time when we HAD money, as opposed to now when fixing it means not paying some bill. Not having a reliable dryer, however, for another almost two weeks, is very frustrating and just seems par for the course. So I am thankful that it kind of works; we turn it on and pray.

The weather here is predicting snow and cold icy conditions. Just more uncertainty.

We are at a time when things need to be coming together, at a time we have waited so long for and things just seem to be scattered. We have had some real reality check conversations over the last two days. Mainly about how we are going to balance the next few months. We are a close family and it is difficult for us to be away from each other. It is something we have to do for Samuel, but we don't have to like it. It is not going to be easy and it is not going to be fun. We are not even kidding ourselves. And with Christmas coming so soon now, the timing of this surgery both financially and time wise is just another thing plaguing my thoughts as well as Mark's. I was planning to do the tree this weekend since we will be gone next, and possibly the next as well. But I cannot even fathom doing the tree. It doesn't feel like Christmas. The commercials are making me feel ill. I cannot put up a tree and then leave with all of this uncertainty on my mind. I want to put the tree up when we arrive home, with Samuel doing well. I want to celebrate then. I don't want to celebrate now, it feels like jinxing our situation I guess. We had a family chat about Christmas and what it is going to mean to us this year. We felt the kids needed to be warned ahead of time about the uncertainty of what is to come. They understand, but it doesn't make things much easier. I am thankful that they understand the bigger picture and that sometimes you just have to make sacrifices you don't like for the good of the family. The hope of next year being significantly better than any of the few previous years is sustaining us.

Oregon did not call me back this week with an arrival date so that is still up in the air. Obviously, I will be calling them Monday. The uncertainty of what we will have to deal with there is another thing stealing my thoughts. It is nice to know people and helps a lot while inpatient. We know no one and so I pray we get good RN's from the beginning since we know all too well that they can make or break your visit. I pray people listen to our concerns, are compassionate and of course that we can go home asap. I pray that Samuel will recover quickly and that things will go well and my post op report won't be one which reveals some surprise no one was expecting. We have certainly had our share of those. I pray Samuel won't be too sad once reality sets and and he realizes what has happened to him. I hope that his anoplasty recovery will be like my tonsillectomy recovery. I had such severe tonsillitis that recovery from the removal of them was not so bad in comparison. I hope that Samuel's butt hurts a lot less after surgery then it does when things are so completely wrong at home.

I am thankful Samuel has fought so hard to be here with us still. As I sat at our Thanksgiving table, I thanked God that each of my children are still here and that we are home, not in a hospital somewhere waiting for the next trainwreck. I just wonder when it will end. It has been a long hard road and in the grand scheme of things, only a handful of months since April 2004 have actually been good. No child should have to endure all this torment. It has become clear to me that no one will ever understand the torment we have been through except us...and God. I am thankful for every GOOD day Samuel has had. I am thankful to be the mother of four wonderful children. I am thankful to be the wife to a man who is the half that makes me whole. I could not be more blessed! Life hasn't been easy for quite some time, but I would not want to do this with anyone else other than those under my roof.

I am thankful that God has taken care of us. I am thankful that God knows our needs, our thoughts and our fears. I am thankful that I have never been alone in this mess. God has always made a way for us and I know He will again. So while things seem uncertain, I am going to rely on Him as I always have to see us through. I am going to take one day at a time and try to leave the worries I have written here, right here, on this page, away from my mind as much as possible.

I am thankful for you for your love, prayers, support and continuing to check in on us. I am thankful to those who think of us as family even though we will never meet. I am thankful to my special friends who are still clinging to my side. We could not have gotten this far without you all. Thank you! We continue to covet your prayers for good weather, safe travel for us and Dr. Levitt. So many other children are given hope by this doctor so please pray for him to be blessed for his compassion. Pray for Samuel, as always, to be free of pain. Pray for the end of this ridiculously long situation. Thank you! Much love.

11/20/06

It feels like we are walking on thin ice here and I don't mean the weather. Samuel continues to have issues. We ended up doing another dilation two days ago to see if we could help things along and he was tight at a 9 again. You would think the scar tissue just clamped down and is holding on for dear life. We went to 13 before stopping. Things seemed to improve over night but yesterday were not so good again. Two weeks from tonight this will be fixed. Let the final countdown begin. Samuel cried for an hour after the last dilation so I will be so happy when I never have to do that again. We covet your prayers for the next two weeks. I want Samuel to remain stable at this point. I would like him to be able to eat and for his anus to relax enough that life is not so painful for him. I would like his butt to heal up again because right now it is red, raw and sore. This is such a vicious cycle. One of the remarks made by the surgeon in Oregon was that his rectum was very narrow. It seems like they might have opened it up some with the last dilation done there but if it has narrowed again now, that would explain why us dilating his anus only isn't having much impact. I am not interested in going back to screaming torture in this household at all!!!!! I don't know how much control of it we will have though. So please pray...right now things seem like they could go either way.

Well, this has started out to be a stellar week. My dryer decided it doesn't want to dry clothes anymore. It decided that Saturday. We cannot get someone to fix it until Wednesday. Us not having a dryer is a big problem since we can generate more laundry than garbage! And this is just not an expense I was planning to incur right now so that doesn't make me feel much happier either. But what do you do? Unfortunately Mark cannot fix this one, or he would have already.

The attorney's office called today to touch base and also sent me a note to forward to Dr. Levitt JIC the surgery does not happen. She had spent some time looking through all the crap from Medicaid and found all the inaccuracies I did. We just hope that things do not come to this obviously. I also called OHSU aka Portland today to find out if anyone knows anything about arrival dates. No one did, so I wait to hear more tomorrow. This day is so close, yet seems so far away now that things are not going as well. Time flies when you are having fun. Time drags when things are bad.

11/17/06

Things remain about the same here. Note that I have stopped counting good days. Things haven't went completely south yet, but let's just say I am watchful of the most minute in changes. And we are counting down to the surgery day now because again, that just means relief of this horrible constant nagging problem. It means the end of Samuel seemingly pushing a baby out just to be able to poop. Yes, he is back to asking to go to the NEW butt doctor and wants his butt fixed. For awhile there, he forgot all about this. Now he asks to go to the hospital every day and packs up his backpack full of dinosaurs which now have taken the place of ducks. I have to tell him each time that we are not going YET. He is ready to pack. I am in denial. I thought about calling Portland today to ask when they are going to give me arrival dates and appts since we will need to decide about the kids. Is everyone going? Are the other three staying with Mark's parents...hopefully. It would be easier to go through the initial part without them. I did not call them. I will do this Monday.

I keep dreaming about the surgery day. It started a few days ago. Now almost each night, I dream about going there, meeting Dr. Levitt and Samuel's surgery being done. I don't think I have ever dreamt so much of any past surgery as I have this one. Maybe just because the wait has been so long and agonizing for the most part. It will be so nice to get this behind us and hopefully then move on with our lives and the next surgical thing. The shunt. Thinking about brain surgery puts everything else into perspective.....I think we have always made ourselves feel better about the last few surgeries by saying "At least they are not drilling holes into his head."

Yesterday we were able to take a little hike through Mud Mountain Dam. Of course our favorite Mt. Rainier Park is closed with no opening day even known because of the devastation there. It was nice to get away from here just for a little while. Samuel did really well and had fun. He really liked the toilet in the middle of nowhere and let's just say we were really glad it was there too! Speaking of toilets, the one in the Backus Bus gets used just about every time we go anywhere. Samuel is not at all shy about it either. Oh, I am so glad we got that! To have to try to find someplace for him to go in a moments notice would be insane.

I received an invite to the Oncology Xmas party which is December 15. I thought about going since other than our former Onc, we like all the staff and have met some nice families. It is cutting it rather close to the surgery date though so I haven't decided whether we will be sociable or not by then.

No other news...just hanging in there one day at a time seemingly waiting for the event that will change Samuel's life for the better for good. Much love.

11/15/06

I became concerned that Samuel's anus was closing earlier this week. So we ended up dilating it. Starting with 7 and going to 12. Each dilator is slightly larger than the last. 7 seemed easy but I met resistance with each one after. I had to stop at 12 simply because it was so tight and poor Samuel was complaining that it hurt. That and we don't want to make the "crack" which requires healing. We just want to be assured that it is okay. Anyway, so it isn't okay and we will certainly be a lot less carefree with letting him do the "all you can eat" thing he wants to do when things start to back up. He is lucky to be pooping out of a newborn size anus again...if that. I did not see much improvement yesterday but today he seems better. It wasn't a major change in things, just a very slight one, but I notice every minute detail with him. It never interfered with his joy, but it did cause him to become aware of his butt hurting again. It did not cause screaming and torment but it did turn the skin red. So I guess the one good thing to come out of it was that I know beyond a shadow of a doubt that regardless of him pooping regularly, his anus would just continue to close. Our ND was hoping that he would make enough formed poop to keep it open and not need to dilate it, and possibly not need the surgery. Maybe, if his gut had another six months of being normal, that would be true. But since in the last 15 or so months, it has never been able to be normal because of the anus, it just doesn't matter. He absolutely has to make this surgery. And it is without a doubt necessary. In my dreamland, I was hoping against hope that we would not have to subject him to this...but now I am resigned to the fact that this will happen and it will improve things in the long run. Mark put my head back on straight tonight telling me that I should feel better now knowing that Samuel NEEDS this surgery and that we have the #1 surgeon in the world doing it. Okay, yes that makes me feel better. It still seems surreal that Dr. Levitt will fly out to us, doesn't it! Samuel is very lucky! We are thankful.

Samuel is shedding his cold by the day and I am better as well. I hope this will be the last of the viruses we see for the rest of the year. It seems crazy how quickly this surgery is finally creeping up on us. Seemed like we would never get to it and now I again, have so much to do to prepare to leave.

The rains and wind continue here. Power has been on and off over the last few days again. The weather has really made me lazy as far as making phone calls and making appts. I haven't made any. It is almost like I need this month off from everyone so that maybe next month, I can be socially acceptable for a week or so. I am not looking forward to hospital life at all! I pray things go better there than they have here over the last few inpatient stays. Samuel, of course, thinks everything that has to do with the hospital is fun. Apparently that morphine is real good stuff........I wouldn't know. At any rate, I think we might hibernate from all humans the week after Thanksgiving to be sure no germs come into our home. So no big plans for the next two weeks. Just riding out the storms as they show up. Pray for December weather to clear up to allow safe travel for us all. Much love.

11/11/06

So today marks day 25 of good for Samuel. Things continue to be good in the area of eating and pooping for him. We are thankful and I just continue to marvel at what an awesome family I have. It is amazing when everyone gets along which seems to be the scenario more and more. I just read something that came from Sonlight curriculum which said, "You know you are a homeschool parent when your kids are each others best friends." That sums things up here quite nicely.

Now, a day like yesterday might throw things out of balance. The weather here has been a torment. The rains continue and now the winds too. Over the last few days we have had no power, no phone, and very little Internet. The weather is not going to be improving as we have another windy storm coming through. Our state is trying to ask for Federal Aid because of the many disaster areas from flooding. With everything so wet, it doesn't take much wind to knock out power phone and apparently DSL as well. So we had a whole day of family togetherness yesterday living in the only room with heat and that was enough to set everyone on edge. But so far so good today anyway.

All of the places we have been hiking over the last two months are now closed due to flooding and weather damage. And most of them today are now covered with snow and don't plan to reopen until springtime. Ugh! that is really sad because we were just getting into a good hiking groove and it was so fun! I really miss it.

Ksyaha and Anna got colds earlier this week. I know not from where. Then Samuel got it. Then I. I was miserable yesterday which I guess worked out well since we had no power anyway and I wasn't planning to work like that. Kaysha and Anna are better now and Samuel and I are better today than yesterday. So far Mark and Daniel totally avoided it. The most annoying part is the sinus pressure headaches for me anyway. Samuel shows symptoms and sounds sick, but otherwise is running around like a nutcase jumping and playing with anyone who will take part. It hasn't got him down at all. So I hope that this ends the viruses now because that is the only thing that would stop the surgery at this point.

I haven't made any appts for Samuel this past week for either GI or Onc. It has been nice to not need them and not have to go there. Samuel's port needed maintenance so Mark accessed it and we did give him some fluids earlier this week as this cold seemed to dehydrate us and we could see it doing that to him. That was a nice boost for him and he just seems like he is flying high! His port is working well and we are all set to not have anything else done with it until Dec. I really need to call this week and make these but with the weather being funky, I am really liking staying home. So I might just call the Onc and see if he is okay with NOT seeing us before the surgery. Might do the same with the GI. The weather is making me nervous about December and traveling to Oregon. Not just for us, but also for Dr. Levitt who will be flying in. Pray that the weather clears to the heavens then and this surgery can happen as planned.

I really don't want to go. I really don't want to put him through another surgery. Especially this one. This one feels like the last VA shunt. We all knew it needed to be done, but at the time, the shunt we had was working and we had our boy back. We were afraid of getting another malfunctioning shunt. We also knew what kind of pain the surgery would cause. It was awful going into but of course now we are thankful it was done because it spared him many procedures which were just prolonging the inevitable. That is pretty much what we are doing now, prolonging the inevitable. Only, now that we can all breathe again, I can tell you with a clear head that I am already feeling sick about this surgery. Mainly because his butt is actually healed up. He can poop, he is not afraid, he is not screaming, and he is happy. He is also continent. Of course that concerns me most and it is the most important part of this, to keep his continence. I am not looking forward to gut clean out, 5 or more days on TPN because he cannot eat while it heals, or being stranded there for a week. Mark won't be staying down with us the entire time, we simply cannot afford it. In my mind the countdown has begun. This week relatively free, next week Thanksgiving, the next week, plans to leave, the next week surgery and recovery. And hopefully the week after that HOME. Don't get me wrong, I want Samuel's butt fixed. I don't want him to have to suffer through it. These people do not know us so pain management will be a number one issue prior to surgery. Having all the screaming torture behind us now almost a month has been like waking up from a nightmare. It was that bad. I feel like I finally woke up and don't ever want to relive it. Yet, I know we will have some sucky days after the surgery as well.

So, I have a lot on my mind I guess. But I continue to be thankful for my loving family and that for now, our lights are on!

11/7/06

If you have watched the news, you might have heard that the Pacific Northwest is having record rainfall and as a result flooding. Many counties are in a state of emergency, ours included. The above picture is of the South Prairie Creek. Just a block from us. It is usually pretty small, obviously trees do not grown in creeks and this creek has turned into a raging river. Normally, from the parking lot where this photo was taken, you cannot see the creek at all. You have to walk down to it. It has caused some serious devastation to many homes in our city. As you see here, picnic tables are floating away and the water is closing in on the new homes in the background. We live up on a hill above this and thankfully in safety. Just lots of standing water in the yard. Several people have not been as lucky. Two of the three main ways out of this very tiny town have been closed due to the roads flooding. I wanted to take some pics this morning, but roads we could pass on last night are unpassable today. We drove around a bit last night and gave the kids some idea of the devastation. They all wanted to know what we would do if water was closing in on our home so we explained to them that we would take only the most important things and flee. Wait it out and pray that we had something when all is said and done. Rain continues to pelt us today. Ten inches of rainfall in a 24 hour period. Please pray for those here who have lost their homes. To those of you checking in from WA and OR, please be safe. We pray for you all.

Today is Mark's birthday! Happy Birthday to my Love! Samuel celebrates 21 days of fantastic. Still better by the day. We have so much to be thankful for.

Thank you to Kayla for the note to Kaysha. That totally made her day! My kids love it when people think of them.

11/4/06

Psalm 28

To you I call, O LORD my Rock;

do not turn a deaf ear to me.

For if you remain silent,

I will be like those who have gone down to the pit.

Hear my cry for mercy

as I call to you for help,

as I lift up my hands

toward your Most Holy Place.

Do not drag me away with the wicked,

with those who do evil,

who speak cordially with their neighbors

but harbor malice in their hearts.

Repay them for their deeds

and for their evil work;

repay them for what their hands have done

and bring back upon them what they deserve.

Since they show no regard for the works of the LORD

and what his hands have done,

he will tear them down

and never build them up again.

Praise be to the LORD,

for he has heard my cry for mercy.

The LORD is my strength and my shield;

my heart trusts in him, and I am helped.

My heart leaps for joy

and I will give thanks to him in song.

The LORD is the strength of his people,

a fortress of salvation for his anointed one.

Save your people and bless your inheritance;

be their shepherd and carry them forever.

I found this Psalm quite fitting tonight. It has indeed been a long journey in which many times I felt like the Lord forgot about us. Just when things seemed unbearable, He righted them for us. This time feels like it is for good. Mainly because chemo is now out of the question, I won't ruin with poison what God has restored. We have never been in such a position as we are now since Samuel's diagnosis. We always got the problems fixed just in time for the next chemo which ruined something else. There was very little time to savor any joy due to the torment which lie in wait for Samuel. Now, Samuel is free.

I dreamed that Samuel had his anoplasty last night. He woke up and immediately was his happy self and say on his butt, in no pain at all. Mark reminds me that I am dreaming! Well, he woke up from his last major gut surgery in which he had both a vertical and transverse incision and sat up in the bed to hug me. So I am sure with a lot of good drugs, anything is possible. I hope and pray that is God's way of telling me this is going to be simple. At least Samuel loves going to the hospital and staying! I sure don't. But then I am not having surgery either. After his surgery...in my dream, I dreamt that I was going to have surgery. Suddenly, I was reminded of that uneasy feeling I have had prior to minor surgeries. I am glad that Samuel can just enjoy each day without concern or worry about what is next. No adult could do that knowing a surgery was looming. I am so proud of Samuel. I have told him that so many times in the last few days. He has been through so much and he holds no grudges. I guess I thought it might take some time to get over everything that has happened over the last year, but I find that we all just want to slam the door on the past and move on savoring each moment with hope for so many more joyous moments to come.

Today is day 18 and I am actually starting to lose track of the days that have been good. We are all so thankful to have left the horrible nightmarish days behind us that we just try not to even remember them. Each day I praise God more and more believing that this is the Restoration we have prayed for and believed in for so long. It felt like it would never come. I will never forget the day Samuel woke up talking after about three months of silence. We were all so thankful, relieved and cautiously optimistic on that day. But with each passing day, he just improved and things because more believable and we were able to trust that that awful time period was indeed behind us. Other than remembering how awful it in fact was, I don't worry about it ever happening again. I hope that there will come a day where I feel the same about this last year or so. We know what caused it, we know what fixed it, it should never get like this again, at least that is the theory I pray will be true.

I put Samuel on our scale here today just out of curiosity and he now weights 45 pounds! And he was not retaining poop since he had made three trips to the pot for the morning. And he was only wearing his usual home attire, a shirt and underwear. That is like over 20kgs! He has averaged about 38-39 pounds here only hitting 40 when he was really backed up. Wow!!!!!!!!!! I was so excited when I saw that. Just another sign of things righting themselves. He can pretty much eat anything he wants and he is SO happy about that!

I continue to marvel at how happy he is, and how much more affectionate he is towards his siblings. Especially Anna. Kaysha and Daniel came home today after spending the night at Mark's parents and the three of them sat down and played cards for quite awhile. NO fighting, just happy to be together. Similar to the time after Samuel's ileostomy was revised, back in 2/05. The time from 2-4/05 was probably some of the happiest months he has had up until now. And it is so obvious that Kaysha, Daniel and Anna have missed the REAL Samuel as well. Both my Mom and our neighbors noticed the positive change in Samuel yesterday when they were here so it is not just ME seeing it.

And for some other good news, Anna is just about potty trained! She has been peeing in the pot but refusing to poop. Well, today was the milestone! Her reward was plentiful along with praise from EVERYONE in the house so I think it will stick. She and Samuel still wear a diaper at night and I figure they probably both will for awhile yet, but the daytime part is just heavenly! I was hoping last Christmas that both of them would be potty trained for this Christmas, and looks like I will get that gift! Lots to be Thankful for this month, for sure! Joy, healing, restoration, hope, love, family, and GOOD food for ALL. Praise GOD!

11/2/06

Two years ago tonight I had just arrived home from Samuel's inpatient stay for the first two days of Consolidation chemo. It was his first high dose chemo in over six months. The initial month of chemo took six months to undue damage from. I remember the sick feeling of starting up again. I remember being afraid of each day, what it might bring, what it might do to him. It was hard to imagine him living through it all being that the first month was such a disaster. It was so scary and truly, I don't think anything else has scared me as much as chemo did and does. It was hard to imagine what the next day would be like, much less envision us now two years later. Toward the middle of this month two years ago, we learned that his anus had collapsed and healed shut, but only because his body went into labor and it burst open after three days of contractions. You can read it all in Samuel's Archives Page 5. The journey we began two years ago today has set the stage for what we have dealt with now for two years to follow. Sickening, isn't it?

Samuel is doing fantastic! This is probably the best he has been comparably to January. And I dare say he is possibly better than that. It is amazing how you don't realize just how broken something was until it was fixed. Samuel is happy. For 16 days now, I have no heard shrieking. He is not in pain. He can eat pretty much anything it would seem. I think Anna probably wonders where her grouchy brother went because he is always happy and they play SO cute and for hours. This is the happy boy I remember BEFORE cancer, BEFORE chemo and BEFORE this disaster.

His butt has completely healed up. Mark commented this morning that it probably always wanted to close up due to the fact that it was a constant open sore. Now it isn't. Samuel at times seems like he is pushing out a baby when he poops, but he doesn't complain. We know this will improve after the anoplasty. The change is obvious and we are now allowing ourselves to believe that this is the real deal. I have actually been able to breathe and have a thought of my own without wondering if he can eat, poop, and when his screaming torture will end. It has been heavenly! It is amazing how much easier it is for me to function when he is doing well. Slowly, I am trying to get back to myself.

Halloween was a blast for Samuel. We did the Harvest Party at the church and all the kids had fun although Anna was a little unsure with all the strangers around. Of course, now that Samuel is doing so much better, the weather has turned to crap so we are pretty much stuck in this house I hate. And I hate it even more this year than any of the previous ones. Oh yeah, and I hate the time change too!!! I am so thankful that joy has been restored to my house. Everyone is happy. I love to hear the kids all play together. I love to see Samuel run around with the same joy I used to see when he was a baby. I love to sit with my kids and do school, not because we have to, but because we enjoy it. I love spending time with these children who are like little friends and are growing up to be very kind responsible caring people. I love that we can cherish each day and we do what we want. I love that we live by our own schedule for now.

We met with the MD on Tuesday. She did not rub me wrong which Mark takes as a good sign. Her office is across the road from Oncology in Tacoma so location could not be better. We agreed on the most basic things, which are that chemo is not an option, ever. Also, that the ND is pretty much in the driver's seat right how. All I need her for is to ensure his quality of life. She had good communication skills which is always a plus and seemed to have common sense about realizing that as far as mainstream medicine goes, for Samuel, that spells disaster. She also admitted that MD's "think" they are helping, but often times are not. So, I think she will be fine. I have let most everyone know about the change. All except Medicaid of course. I think I felt similarly when I met our current Onc. He did not piss me off, but the meeting was pretty lukewarm all the same. Some things just take time to establish. Mark though if I did not hate her, then we should just trust the GI's recommendation. So that is done. We will see how it all plays out. It is convenient that she knows the GI and the Onc and is willing to not even question the ND and/or Samuel's diet or our decision about treatment which in my mind is equal to slow death.

I need to make follow ups with the Onc and GI sometime mid month. The countdown for Dec 4th begins. In one month's time, we will need to be checking in to Portland. At least I know that THIS month will be good. I pray that this ends the suffering for Samuel and that we can all move on.

11/1/06

Day 15. Samuel does nothing but improve by the day. More later.

10/29/06

Today marks seven years that my brother Jason has been gone from this earth. I am sure my parents think I must have forgotten since this subject seems so taboo. The events surrounding my brother's death are also a taboo conversation it would seem. I guess that my parents don't feel like siblings must grieve at all. I certainly hope I never have to bury one of my children, but if I do, I will remember that siblings also need to grieve and talk about what has happened. Everyone needs to understand and find closure for themselves. For me, my brother was more of a twin in many ways. We both shared the same congenital defect, and it showed in our appearances. Both of us had albinism so are blonde haired blue eyed. We both shared nystagmus, which was apparently a great thing for kids in school to make fun of. And we stood out for those reasons. I ran info someone I haven't seen in about 18 years, a lady I used to exorcize race horses for, and she recognized me. I, of course, did not know her from Adam. It is the eyes and the hair. She asked me if I still wanted to ride for her, now some almost 20 years later. I do want to ride....my OWN horse, Bud.

My brother and I shared the bond of being the outcasts in school and did not really find our places in this world until we entered the workforce where people seemed more willing to get to know you, instead of only see your handicap. My world changed of course, when I was able to wear contact lenses and ultimately then sunglasses. It was like being a whole different person. My brother chose not to wear contacts, but also had slightly better vision than I. We were very close a number of years prior to my marriage but that bond was never broken when I married, it was just lengthened a bit. Kaysha and Daniel were too young to have even known him, they just know of him. I wonder what part of any of this journey he would have shared. Some times I look at Samuel's face and see Jason as a little boy. I think I see it most in Samuel's smile, it is the ways his eyes crinkle up. Some times I notice it more than others but over the last few months, I have seen it more and more. When Jason died I felt like a part of me also died. It took several years to get past those feelings. It seems funny and amazing to now see his eyes when Samuel smiles a certain way. Almost like he is looking at me through Samuel's eyes.

This is day 11 for Samuel. Still counting the good days. He is enjoying eating food. We are trying things slowly in modest amounts but so far everything has been good. He just continues to be happy! So, therefore, we all are. It is an amazing relief. Another very positive thing I have noticed starting today is the amount of poop to pee. It was and has been that he peed more than pooped. I could always tell a problem simply by the ratio of poop to pee. Suddenly, he is now peeing less often and pooping less and larger firmer poops. So he is absorbing more liquids and it shows in his face. He has more color than I have seen in months. This is yet another good sign that things are healing up...that and a person can now wipe his butt. The next hope would be that he can sleep through the night without breakthrough poop. I think we are headed in that direction.

Once again, Monika has such good perspective on the latest events...

I am so upset at those emails about you Jen. Having people lie about

you -- or concoct offensive lies from the most insubstantial of

inferences is one of the most horrible things you can go through.

It's like that telephone game you play in grade school -- the final

message is a far cry from the original one. When a case is as

complicated as Samuel, it is inevitable that all the threads will

become tangled and confused and the truth obliterated as more and

more people communicate about him. Each person provides their own

bias, their own distortion, their own inaccuracies, and so the final

product becomes a lie and a distortion.

Unfortunately, I don't think this whole mess with medicaid is about money. If only... although it had never occurred to me that one of the aims of Medicaid is not just to be "frugal" in their spending, but to keep the money within the state. That is a second goal which truly shocks me. I also think it is about reputation and personality. When people take strong positions, they are loathe to vacate them because it would mean a loss of face. People will fight to the death and will argue for stupid things just to avoid losing face. And unfortunately, Samuel has been caught in all of this. I am at a loss to explain the Seattle children's "patient advocate" though. If anyone should lose their job, it is him.

I do feel as if Medicaid KNOWS the truth, but it just doesn't matter because too much has already been said and done. Especially by them. He only hears what he wants to hear. I cannot believe I was so stupid to have thought that when we asked for approval to go to Cincy, we would have gotten a fair look. No one looked at the records that were sent period. They heard what they wanted to hear from Seattle and that was that. I will take Monika's words one step further and say that after all we have lived through with Samuel's ordeal, having people be so insensitive to our feelings by spreading their lies seems especially hurtful. I love how our surgeon in Seattle writes that I was upset by Samuel's persisting bowel issues, as if I should be happy? They don't know what would make us happy? Obviously!!!!!!!!!!!!!! I wanted someone to pick up the pieces and put Samuel back together. I thought that was their job. Foolish! Stupid! I will go back to banging my head against the wall now.

A few other things I forgot to mention in my last update. Apparently Dr. Levitt invited Dr. H from Seattle to come to Cincy and LEARN from Samuel's anoplasty. I am sure that went over like a fart in church. Even someone from Medicaid said in an e-mail that Dr. H. was a transplant surgeon, why would he want to go learn from Dr. L. I did find that rather amusing anyway and also where they wrote that they KNEW Dr. H was a transplant surgeon. Now apparently they did their own transplant and he is a GI surgeon too. Hmm.

I had a conversation with my Onc the other day about us being "socially difficult." as a family in the medical system. He told me that we are not socially difficult. If one understands that Samuel is "medically difficult" and takes the time to see all we have been through, then one would understand that we are NOT socially difficult. There is a difference. If we can find people to align with that thinking then I think we would be fine. It is and has kicked us in the ass not having any one care giver this entire time because literally there was no one to advocate for us and no "MD" who can accurately remember all of the events leading up to today. Even when the Onc first called Medicaid, he literally did not know us. It has only been the last few months that I realized how good the move back to Tacoma was, at least in regard to him as an Onc. He is worthy of trust. I cannot say that for 99% of the rest of the Oncs.

I guess in retro, had we contacted the ND when problems arose back in February, then maybe we would not have found out about his anus closing down for another few months. It was all these additional problems that drove us to seek Levitt out so who knows how long we might have lived with Samuel's very small anus. Had I not contacted Levitt, Seattle would have never proposed anoplasty so that may have also added months of dilations by them which as we now know, only makes the problem worse over time. Had things been as they are now, we would have not felt the urgency for a permanent solution and sought out Levitt at all. If Seattle had taken care of us, we would not have looked elsewhere either. When his anus was almost completely sealed up in April, the constipation from this anatomical dysfunction was obviously enough to throw everything out of whack for months and possibly even years. We also don't know what effect chemo was still having on his GI tract earlier this year either. His gut certainly wasn't getting any better now some six months after we realized the anus was closing. The ND's suggestions are healing the gut obviously and things are making it out of his anus because we know it is NOT closed down currently. We also know Samuel is continent even when it is dilated to a size 19. So, after the anoplasty, the closing down and constantly monitoring the size problem should be over. And we will have a month or so before the surgery yet to keep on with the ND's recommendation to heal his gut on the inside so his outer skin on his butt should also be in great shape for the surgery. Again, these were all concerns I had when we were planning the anoplasty in Seattle but during that ER visit and short inpatient stay, NO ONE LISTENED! Oh, yeah, I remember, the x-ray was normal. Nothing was wrong. I am sure it was ALL IN MY HEAD then too. I am working on getting over this, but it might take awhile.

The anus alone is easy to dilate and keep open NOW THAT WE KNOW IT IS CLOSING DOWN and of course since we had to do so many enemas he is now okay with us doing it. So, I am sure it all worked out the way it was supposed to, just not sure why everything has to be so difficult all the time. I just want out. I hope Samuel's body will straighten out enough that we can just walk away for awhile or forever. More than likely, we will never be completely understood. But the importance of finding MD's who will advocate for us has become quite clear. I am not sure how much trust/faith I have in it all at this point. I want to get Samuel's butt fixed and run as far away as I can from all of it. But unfortunately, then there is the shunt...........yeah.

The other day while driving around town, Samuel told us he remembered when he had his nose tube. "When I had my nose tube, that was when I was really sick. I couldn't talk. I would just say "eh eh" really quiet." So he DOES have some recollection and he does remember trying to talk and having nothing come out. My sweet sweet baby has been through SO much. It is sickening. I cannot even tell you how thankful I am for him feeling better.

The ND asked if Samuel was sleeping at night, then asked if I was. I told him that the ratio of sleep I got was directly related to the amount of stupid people I had to deal with in a day. I have started to sleep a little better but have been simply exhausted for the last few days anyway. All of this has probably taken ten years off our lifespan due to the stress and trauma physically and emotionally.

Just to clarify. Medicaid is fine with Oregon and will even now pay Dr. L to do Samuel's anoplasty there. We have asked for a Hearing date after Dec 4, now set for Dec 18th, JIC something should happen and Samuel is not able to follow through with the surgery in Oregon. Should we miss that, we would truly be out of luck and then our only hope would be the Hearing and a decision that we could go to Cincy after all. Obviously, we just hope to make the surgery date and have all this behind us. Then I can tell them to all stick it up their butts!!! Anyway, just covering all the bases. There is no back up plan should Samuel miss the surgery. There is only ONE surgeon whom we plan to allow to do this at this point which would mean months of trying to preplan it again. NOT interested. We have waited far too long already.

10/28/06

Day ten is going well. Samuel made us some real turds today, LOL. He is still having some issues with acidy poop from time to time, but the main thing to note, is that he IS pooping regularly with a transit time of about 5 hours from in mouth to out butt. Very very good! He has been happy, and I mean happy. He and Anna have been playing together in the ways I had always hoped they would from the time I realized I was prego with her. It has been a joy to watch them get along. Over the last so many months, Samuel's attitude can best be summed up as a grouch so the change in him is huge. Obviously things are going in the right direction.

So, I spoke with another ND yesterday. Same office as my ND, he was just out of town. He is pleased with the progress Samuel's body has made in the last week and plans no changes for another month. The original plan will be the same. Their expectation is that as his gut heals and motility is restored, he will absorb more water, and poop less, but larger quantities. We are not there yet. I am not worried about the timing. Things have been bad since February and I know it is impossible to fix eight months of damage in a week. But one cannot argue with the immediate relief which is what we have prayed for for months. Of course I am kicking myself for not calling them sooner. I guess I was just tangled up in this mess enough to not be able to think straight. The other interesting thing to note is that we tried this same concoction late last year to help with the enormous amount of pooping he was doing then and it did not seem to do anything as far as slowing down the gut. My conversation with the ND was that he has been doing this over 20 years now and that I needed to trust him. Glad I did.

So, that brings me to a very big point I want to make. I have had several arguments with Medicaid about Dr. Levitt's ability to fix Samuel even though he has NEVER seen him IRL. He thinks I am doing my child a disservice by allowing doctors who have never seen him make decisions and recommendations for his care. Yet, our ND did just that. We did not go in. I haven't had Samuel in to his office in well over two years now. And still it looks as if he is the only one who has possibly fixed this. He had the solution in less than a five minute call and it took less than 24 hours to see change. He did not need to see us, or need to run a buttload of inconclusive tests either. It did not cost Medicaid a dime. These idiots should thank me for saving them money, but instead they look for ways to make this our fault rather than faulting the corrupt system they are a part of. I have been looking for someone to fix this for months and either getting shrugged shoulders, people who just don't listen, and my personal fav, people who tell me to cope. The ND understood Samuel's pain, he understood his suffering and he has helped to end about 95% of it. I just don't understand why these superior MD's were unable to do the same. How many more people do you think are suffering because of their lack of knowledge? This is again, bigger than just our family. This is failure of a medical system that is run by greed rather than compassion.

In reading the e-mails from the surgeons at Seattle Children's, I am astounded at the fact that they think they are still able to help us. We have been asking them to help since April and they have offered nothing but misery. They are not even competent enough to know when they are not able to help. They are not even competent enough to know they have just added to Samuel's problems. One of the things in this file I read that was said by Dr. Levitt is that in dilating his anus, they make a crack. This crack creates even more scar tissue. So they should not have been surprised when his anus closed down faster and faster, yet they were. Again, because they had NO CLUE what they were doing. And still they want to hold on to us knowing full well how pissed off I was at our last inpatient stay. Because it is their "fiscal obligation" to keep the revenue from Samuel's case in the state. Proves to me that no one there wants to help heal Samuel, they just want to keep aggravating the problem. Having our ND come in and in five minutes seemingly solve the problem only makes what they have done or NOT allowed to happen for us, worse in my view. Our surgeon saying that the x-rays were normal proves to me he needs to go back and take some classes on how to properly read one. Or maybe connect with the GI who is affiliated with Seattle by the way.

Some other interesting things to note. If Medicaid sent the fired PCP the huge stack of BS I have here, then it is no wonder she had so many preconceived notions about us. Obviously, all MD"s stick together. They other thing that is clear is that none of what I wrote was ever read by anyone from Medicaid. Their entire Declaration is riddled with inaccuracies. Somehow our surgeon in Seattle is now a GI surgeon. Even though in their initial e-mails they acknowledge he is the Transplant Surgeon and a General Surgeon. Interesting. Also, it was noted that we fired our original team in Tacoma before coming to Children's. They took this straight from our Surgeon's note. He was not involved initially when Samuel was transferred there because Tacoma was out of options. Tacoma sent Samuel to Children's comatose after three failed shunt surgeries. It had nothing to do with his gut. Clearly, no one there has actually read the records because all these doctors know everything about us. We are the problem. I find it actually amusing how upset they get about being "dismissed" by us. Only a fool stays in a place that isn't helping them. When that became clear, we left. Clearly, Samuel's condition could be helped as evidenced by the last ten days. Clearly, they did not have the knowledge or give a damn to do it.

Another very interesting and amusing thing to note. After reading and putting all their mess of communications together I realized that Medicaid talked to our surgeon in Seattle on the very day I was called to say they were denying services in Ohio. Our surgeon told them the surgery was planned with him the next week and apparently they thought if it was denied, we would follow through with the surgery. And in fact, our surgeon was stupid enough to think we would too. I am sure it was quite a slap in the face when we did not show. The surgery was not canceled until the Monday after I received their phone call denial. Note, I did not get a denial in writing for two more weeks following the call. They were waiting to see what we would do. So, after that week passed, there was a few notes asking if anyone knew if Samuel had the surgery. I had contacted the Senator for help during this week and they got a copy of that note as well and that was what really stirred the pot since they have to act on a note from the Senator within a week. So, I imagine since Children's was pissed we did not come, the fabricated the story of how we never canceled the surgery and did not call them back to help piss Medicaid off even further. Who knows! Then on the Monday that Medicaid actually called me to accuse me of all of these allegations, imagine how surprised they were to find out that we already have the surgery planned in Portland with Dr. Levitt planning to fly out specifically for us. Monday was also the day I officially received their denial in writing. I am sure that was quite a shock to him since he was planning to contact Social Services, etc. since we were putting our child at risk by refusing surgery here. Oh, I am sure that was good for a pluther of notes. I did see several. One to Dr. M. aka liar at Children's asking if me canceling the surgery was true and also about contacting Mark Mendulo in Patient Complaints asking for help for MONTHS. He also wrote that I "claim" that Dr. Levitt was coming to Portland to do the surgery. Would it be appropriate to have Dr. H. call Portland with Samuel's case history. Once all this was confirmed, that must have been when this idiot figured I was not playing around. And thus he became more "helpful." Yes, after this set in, I was feeling quite pleased with myself which was a better feeling than what I have previously felt all week which was sickened and appalled by everything. He still hasn't called and Mark told me if he ever does to let him know I did not need his kind of "help" anymore but if I did need someone to lie for me, I would give him a call. Of course Mark knows I will say this too.

Someone asked if we ever got any help from the Senator, Maria Cantwell. No. Apparently she is too busy slandering her opponent to care about Samuel.

So as you might imagine, MD's are not too high on my list right now. With that said, the MD we are seeing on Tuesday, the one referred by the GI called me yesterday. She received my fax and said she was fine with us coming in to meet her. She noted she had his chart but had not looked at it yet since he was not technically her patient yet...which I thought was nice. I made it very clear to her that we are done with chemo and what the future plans are for the moment. I also let her know about the crap with Medicaid. She was still fine with everything. She sounds intelligent and obviously calling a patient who isn't even your patient is a good sign. So, we will do that Tuesday.

We are also making preparations for December. The inpatient stay is about 7 days according to Dr. Levitt. I am not sure how Portland will handle things but I assume the same will apply. We are also thinking about holidays, and finances since of course all this happens in December. I am also thinking of what issues we might face while there inpatient since my attitude toward MD's right now is at all time low. I just pray this is a good experience. I pray that we are done when it is done. I would really like to spend next year putting all my thoughts, effort and energy into moving. We still don't know where we will go. Obviously, after all that has happened here, we do not want to stay in this state so some research will be done on other interesting states.

Enjoy the weekend! We plan to. This week Samuel has eaten toast, a PB and J, pizza and sausage and they have all made it through in a timely manner. No IV fluids for over ten days. No Slimy. If that is not significant progress, I just don't know what is.

10/27/06

Day nine, this feels almost real! Taking another deep breath, enjoying each day of good we get. Thanking God. Samuel has been the most sweet loving playful happy boy I have seen in a long time today. Possibly one day my attitude will match up with his...but unfortunately I have seen and read too much to be as okay as he. Forgiveness is a hard thing sometimes, especially when the wrath toward certain people keeps me up nightly. As a dear friend said, hopefully one day this will all be behind us. More tomorrow. Thank you to those who send me notes today hoping day nine was a good one. Much love.

10/26/06

Day eight was great for Samuel. He continues to do well!

10/25/06

So, I received the stack of crap from the attorney's office. The Paralegal did warn me about their organization skills but neglected to mention the utter unprofessionalism displayed throughout. A lot of the comments in reference to me personally were blacked out as well as comments about Cincinnati Children's. So, in summary, it appears Dr. S who was so kind and nice on the phone to both me and Dr. Levitt's office decided he did not like Dr. Levitt and you know the rest. He makes his comments known quite well above. I left out the one where I sent them the Cincinnati Children's website and he said, "somehow I am not impressed." In their fact finding mission, they wrote a lot of the facts wrong, such as our current Onc being our original Onc. And it would appear that M from Seattle Children's actually wanted to encourage Medicaid to send us to Cincy and I don't see any fabrications from him on paper. So now I wonder about that as well and who the real liar might be. Also, I love what our previous surgeon wrote about us and mind you that it has been declared several times on other pages that we have went against advice from our Oncologists and Samuel is at "high risk of recurrence." Oh, and I am difficult to understand because I don't speak in correct medical terminology. Well, if anyone can correct me on saying that Samuel's anus and rectum collapsed and healed shut and then burst open in a manner consistent with a woman in labor, please educate me. And lastly most insulting was the pleasure Dr. S got in my tears when he called me to let me know this was denied. He couldn't wait to let Thompson know about that call and then wished him a great weekend.

Obviously, Medicaid was NOT going to approve Dr. Levitt from the beginning simply because of one person's opinion. Everything I did to try to change the outcome was completely a waste of time. They knew we had transportation and never even contacted Cincinnati to see if they would accept Washington's fee schedule. It looks as if they were close to even saying yes except that Dr. S continued telling them how he did not like Dr. Levitt and found their claims false in regard to Samuel. In on instance, a letter I sent to S was forwarded to the large group who seemingly got everything with him writing he was too busy to read it so if anyone else wanted to, please summarize. He was too busy to read about Samuel and how much he has suffered. I saw a lot of my notes included. Not just ones to them but also to Dr. Levitt. But I guess since I don't speak "doctor" no one could be bothered. None of these people bothered to put themselves in our shoes. As they said, WE are the problem here. Not them or the medical establishment. It is outrageous of us to expect competent help here, that is for certain. I am a fool for thinking that these people actually care about my little boy. Does anyone really care anymore? About anybody? In reality, I am sure everyone feels Samuel's surgery is a waste of time and money since he is at "high risk of relapse." There is a good lesson to be learned here and I am posting these in the hopes that it will open your eyes a little more. Obviously, no one is willing to help us or thinks they can at this point so we are stuck riding this out to whatever outcome. Trust NO ONE. Expect no compassion. Expect people in high places to lie and get away with it. Expect everyone to cover everyone else's asses. Every person named above is responsible for Samuel's suffering. I love how our surgeon says Samuel's x-rays were normal when we were last admitted and our GI says they are anything BUT. This sometimes feels like a really bad dream, or a movie. I just want it all to stop. All we ever wanted was an END to Samuel's suffering. No one here seems to give a crap.

Mark reminds me that none of these bureaucrats got to their places because they were upstanding citizens. They had to be two faced liars willing to do whatever it takes and kiss whomever's ass. And here I thought I might find a compassionate soul. Boy was I wrong.

So Medicaid, has never called me back since I told the PCP I wasn't using her. SO she obviously reported back in. Kristina and I had a conversation after I met with this PCP about how Medicaid probably told her I needed to be gotten under control. From reading through the crap today, that was certainly the impression I got. He obviously knows I am onto them. I thought I had heard it all, seen it all and read it all, but this just takes the cake and the sad thing is, they played it, and everyone involved like it was a game. I am sickened to think that these are the people we have trusted to help and look how much help they are. Wow is all I can say. If there was ever anything that would make me even MORE against the conventional medical establishment, this is it.

There just isn't anything else to say other than Samuel is still doing WELL and I am THANKFUL! No thanks to any of the people mentioned above however. Samuel's doing well makes the above more bearable. This is day seven and we are counting the days until we can be free of all of this mess. Satan must really be worried about Samuel's future to keep throwing stumbling blocks in the way. It has been a very hard day to praise God and give this over to Him but I know I can do nothing else but that.

I had to go back and read one of Kristina's notes to me because I have been really angry today, and I leave you with it.

"For behold, the day is coming, burning like an oven, when all the arrogant and all evildoers will be stubble. The day that is coming shall set them ablaze, says the Lord of hosts, so that it will leave them neither root nor branch. But for you who fear my name, the sun of righteousness shall rise with healing in its wings. You shall go out leaping like calves from the stall. And you shall tread down the wicked, for they will be ashes under the soles of your feet, on the day when I act, says the Lord of hosts." Malachi 4:1-3

Healing will come for Samuel, one way or another. Be assured and certain of that. One day he will jump around like a new calf, prancing around after being held captive - without pain, either here with you, or at Jesus' feet. BUT be sure that the healing WILL come. Samuel belongs to Jesus.

And also be sure and certain of the Holy WRATH OF GOD upon those who have hurt him and your family. He WILL act.

"Beloved, never avenge yourselves, but leave it to the wrath of God, for it is written, 'Vengeance is mine, I will repay, says the Lord.' " Romans 12:19

10/24/06

Today is day SIX! Still counting the GOOD days. Samuel had french toast today for lunch. Add that to his usual foods we allow him to eat on a daily basis. He is pooping well, earning his nickname, Mr. Pooper again. And while it is not all ideal poop yet, it is coming along. Unfortunately he came down last night with another puddle in his pants, not how I like to be awakened at 2am. This is the second time he has done that this week and it is almost like his body is ridding itself of the old rancid stuff at night because in the day his poop is well formed and he is getting it out just fine. So, obviously, we will not be going to Portland for dilation since one, we are doing it ourselves as needed and two his poop is currently doing it for him. He went quite a long time between poops today which just scares me because I feel like he is getting behind. The ND thinks on this regimen he should get to only going once a day which I think would really freak me out for awhile until I got used to it.

His face is glowing, the black circles under his eyes are fading away. He has played a lot today with Anna...and played nicely. He has played with both Kaysha and Daniel and had very few angry outbursts. One of the things he first did while in the hospital in 2004 once he got really sick and his body was falling apart inside him, was to NOT want anything to do with his siblings. He would scream when they came near. As he got better, he got better about letting them come around him. Today I swear I have seen that very thing happen. He has spent a lot less time in front of the TV ordering everyone to get him this or that. He has gotten up and played, both inside and out. He has been happy. Samuel has not had to endure Slimey for over a week and has not been hooked up to his IV fluids for about the same amount of time. Wow, it has been nice! I sent our Onc a note telling him know the news and again stressing that I am not holding my breath here, but every day that is good is obviously a sign that we are heading in the right direction.

Currently annoying me is the news from the Attorney's office. The Hearing, should we need it, is for Dec 18. Another attorney will be stepping into represent us at that time. I am fine with that and the hope of all is that we will not need this date. The annoying part was her reading me the Declaration from Medicaid. One special part where he notes that the care we have received at both Seattle and Tacoma have been superb and there is no reason for us to go to Cincinnati since we have access to such fine surgeons here. I don't know why but I am just amazed at their ability to lie on paper and get away with it. I don't have it in my hands yet, should be here tomorrow. She thinks she has warned me about everything in the file I might be upset about. What kills me here is that this is a little boy that they are all lying about. Not just Medicaid, but Seattle Children's as well. Places we have turned for to help are just heartless liars. I just don't know of any other way to put it. I really wish I could go meet Medicaid in person and see if he will be so bold as to lie in my face. It is hard to tell, obviously, when you are on the phone. Not that it at all matters now. I never heard from him since my chat with the fired PCP so obviously she reported right back to him and he got an earful and knows where I stand. Probably a good think I talked to her yesterday, before hearing his latest comments or she would have really had an earful! It is just unconscionable that people in the medical field, doctors, would think it best to let my child who has been through so much already, continue to suffer. If anything would make me any more bitter toward the conventional medical establishment, this is it. Hearing this all in writing, I am just glad Samuel is doing well today because that takes a bit of the sting out of it at least.

So, I made an appt with the PCP referred to us by the GI. It is for 10/31. I sent our synopsis and cover letter giving her the option to opt out if she did not want a case with this complexity. I also told the receptionist to make sure she gets it today so she can contact any of our "trusted" doctors should she have questions. So far, the appt has not been canceled. We shall see how it goes. I will be visiting with "Rescue 911" the ND on Friday to let him know of Samuel's condition. which I pray continues to be amazing!

10/23/06

7am came bright and early. The ALJ called a bit after 8am. The need for a hearing was not disputed by Medicaid's attorney, but every date that was cited it would seem he was already busy. He could not relay with what, but he was busy. I did not buy it. He was trying to push the date to January obviously because he does not intend to prepare for the hearing until December 4th if the surgery does not take place. He was the only one on a speaker phone as well, like he was working while being bored by this phone call. My Rep is leaving the state after Dec 16 and wants this to be heard before then. But the Medicaid attorney is "busy." It was asked of my Rep if she could have someone else stand in for her and I then asked if this particular Medicaid attorney was the ONLY one Medicaid had. Perhaps HE should find a replacement. No one could decide so the conference was postponed until 4pm today. Medicaid's attorney did not think we had any evidence to warrant a long hearing so he decided it only needed an hour. Our Rep said at least HALF A DAY. Yes, I was biting my tongue quite a bit on this call. So I don't know what happened after that. I told my Rep to just handle it, we were leaving for the day, and so we did. So I don't know yet what was decided. She said she was going to call Medicaid's boss to find out about a switch. The whole thing was pretty stupid and I am quite tired of wasting my time. My Rep is sending me ALL the Medicaid records, every call transcript and every word ever said in making the original determination about Samuel's denial. I told her I was sure it would piss me off and she said it definitely WILL. Apparently one of them even said they did NOT like Dr. Levitt. So I might post some interesting notes after I get these. If there is one thing that is now firmly cemented in my mind, it is that NO ONE is going to do the right thing simply because it is the right thing. No one cares. If they do, they certainly have a funny way of showing it. I can just see that OHSU will be getting 4-5 phone calls to see if Samuel had his surgery or not when the time comes.

Off to bigger and better things. We did about a 3 mile hike today. Pics above. Samuel did great. He looks better. No Slimy since early last week. No IV fluids. He is pooping though I admit I am still waiting on the Giganto Loaf for today. This afternoon we allowed him to eat a little. He feels good, he looks good and these are both telltale signs of good. Overeating is a sign of doom. He is still eating and getting full so also a very very good sign. And of course I feel better because he does. This is FIVE days now. Still not holding my breath. Still waiting for the other shoe to drop. I think I will carry that feeling a long time to come.

So after a lovely afternoon away enjoying life, I return to find messages from the PCP, the one I am not using and five minutes after her, Medicaid calling to see if I had talked to her yet, admitting to knowing I did not last week. So, I did call her back and apologized to her for Medicaid jumping the gun and getting her completely involved prior to our approval. I told her I was still interviewing PCP's and was not going to be choosing her. She asked why of course and I told her that I did not think she was going to advocate for Samuel but rather for Medicaid who has their own agenda. I got a wishy washy response. The kind I can tell immediately. She is now sympathetic to me, but I also know she will then call Medicaid and be wishy washy with him. Sorry. I want a doctor who agrees that their decision is WRONG and the suffering Samuel has had to go through is WRONG and who wants to help NOW rather than tell me to try to cope. This is a person with no idea what coping is. I really really want to have all their butts sewn shut and then tell them to try to cope for a year like that. She told me I did not have to apologize for them and I told her that I did because I know they never will. So she knows pretty much why I am not choosing her and she still offers to be there should we reconsider. I hate wishy washy. Pick one side of the fence or the other already. I will do what has to be done myself. You can bet these people know where I stand.

So, I am frankly surprised Medicaid did not call me since I am sure she called him right back to report everything I said. But he didn't. I cannot wait to get all their comments on paper at this point so I can mention some of it in our next call, which while I would like to ignore him, I probably won't be able to given the sticky situation. I mentioned to my Rep that Medicaid always calls me on his cell phone. He never calls me from his office anymore and hasn't for a long time. She thought that was just about as strange as I do.

My Onc did not personally know the personality of the PCP the GI referred us to but did think that in calls he had taken from her that she was excellent. And if she does not work out, he will assume the identity of our PCP until after the surgery. I am thankful because I am quite tired of playing doctor lottery. Like lottery tickets, most of them are duds. I haven't called to make an appt with the PCP and will do that tomorrow. I haven't heard anything from the GI either but I am currently living in Laa Laa Land because Samuel is doing WELL!!!!!! PTL!