2/26/07
We celebrated Anna's 3rd birthday yesterday though technically, it is not until Wednesday. She had a great party and has really become quite the clothes hound. And you cannot make a mistake if the article of clothing is pink or has Dora on it. Last year I was feeling a bit sad because she was often left out, perhaps neglected, because of all of Samuel's complexity. But in the last year, she has really found her place. Now, she is a Mini Kaysha. We really do a double take on some of the pictures because there is so much of a resemblance. Her Terrible Two's seem to have delayed and now we have the Terrible Three's instead. She is quite a handful and often the things that pop out of her mouth remind me that she is indeed MY child. It is a very good thing she does not go to school because I would get called a lot! Well, it would be like Kaysha in school........her teacher met me at the car about once a week there for awhile. She was not going to be told what to do AT ALL. And Little Dee is following suit just fine. These are not going to be meek girls by any means.
Samuel is doing pretty well and I have decided to use Imodium now that I know his gut is healed and anus is open. I really sat down and analyzed his pooping schedule and he pretty much doesn't go until 2pm but after that, it is at least two in a row, and if there is three or more, the more watery/acidy it gets. We know there is a storage problem given his lack of colon, but if we could spread these poops farther apart, it would give his gut more time to dehydrate them better. I am still playing with doses but I think we are on the right track. And bigger more formed poops means he is dilating his own anus and that is what we want.
I am going to cut this short as I usually update in the eve, but grandma's want to see pictures so here you go!
As of late, I have gotten a lot of requests for more info on our Herbal Pages so I have spent some major time updating them and adding new info and pages. Added a new Links page as well. Will probably add more as time goes on. Enjoy.
2/20/07
It has been another LONG day of sitting. In cars, hospitals, take your pick. I always feel like I am physically ill when we get home and am worthless to do anything for the remainder of the day. But other than that, the day went fine.
Some interesting things to note. Samuel's rectum, few inches of colon and small intestine look NORMAL. That is, normal, like any kid who has not been through chemo, etc. NORMAL. No hemorrhoids, no fissures, no redness, irritation, nothing. Go figure. Okay this is a good thing, a GREAT thing, because as we all know, God and I have been working like crazy to heal this and today our GI says it looks absolutely normal. Praise the Lord. She also noted that Samuel has 14cm of gut from his anus to the area where the colon is connected to the small intestine. (Reanastomosis) Approximately 1-2 inches of that is rectum and the remaining 3-4 inches are sigmoid colon. Then the large joins the small and I have a lovely picture of it as of today. A "normal" kid would have a similarly sized rectum but approximately 5 FEET of colon. That vs. 3-4 inches. My poor poor baby! His gut is healed up on the inside and is most likely just trying to figure out how to use what it has left, which as we know, isn't much. But until someone spells it out for you, you just cannot picture it. I am still waiting for God to decide this colon needs to grow back........
Samuel's anus is a size 13 today. Down from 17, just a notch above the size of a newborn's again. So, maybe this has something to do with the troubles as of late. So we did not expect it to be a 17, I guess. I was hoping it would be bigger but I guess 13 is better than 6. Upon receiving this news, I told the GI that she is in the drivers seat here and I would leave it up to her to make a plan as to what to do now. She understands that we are NOT going to dilate this ourselves and she doesn't think WE should have to put Samuel through this. In her experience, we can break the cycle of the scar tissue closing the orifice by doing strict dilatations every 6 weeks to the letter. With the anoplasty being done removing the bulk, she feels that another 3-4 sedated dilations should stop this cycle. So we will go in in six weeks for another and see where we are at that point.
If Samuel's issues as of late are from the anus closing down, then it will be obvious in the next week or so as things recover from the dilation. Our GI also took some more biopsies. Both from the colon and the small intestine. I think she was surprised to find "normal" so took them just for curiosity's sake. Originally, she was not planning to do any. So I will be waiting to hear what they show but I expect "normal." This may just be an anatomical thing we have to live with for the time being. This closing needs to STOP. Pray that his body decide the anus should be bigger, not smaller.
We really have the needle in the haystack with this GI. She is everything I could have wanted in a doctor. She came in to LMK that Samuel would probably be sleeping for awhile post op. "Just to let you know, he got a LOT of anesthesia. I did not want him to feel ANYTHING!" Sending him back with her was like sending him back with a trusted family member. This was really a nice change for me. Of course, the other busy bodies, anesthesia, RN's etc, all asked about his leukemia and where it is being treated since our chart in Seattle has lots of holes in it now. They also asked WHO in Oregon did Samuel's anoplasty. I have become pretty vague in my answers but I at least trust that our GI is not having awful conversations behind my back about the choices we have made. I pray that God bless her. We are so lucky to have found her!
Samuel was apparently quite a character when he went back with the doctors. The GI was laughing about how funny he was acting, asking all the doctors their names and then wanting to shake their hands. He came back to me a very MAD boy however. Anesthesia seems to be worse on his nerves every times. He wanted a popsicles, they brought him one, then he did not want it. He told them all I was not nice to him and I needed to leave. When I did not leave, he covered his whole body up with a blanket and hid. Mark arrived with the kids about five minutes after Samuel came back and the kids asked, "Where's Samuel?" That made him mad. He wanted to go home, but did not want to get dressed. He wanted to eat, but not the popsicles. He finally agreed to eat it under his blanket. He scarfed it down in under two minutes. It would seem the simple act of eating this changed everything because after that, he just improved by leaps and bounds. But geez! Don't come to meet him after he comes back from anesthesia or you will get your head bit off! He was NOT cute and funny then. Of course, we all laughed about him hiding under the blanket later.
Samuel's "Pull Ups" were a big hit at the hospital today. Everyone loved his Mama made undies and they are PERFECT for our needs.
He is fine tonight, happily playing and eating. Pooping hasn't been too terrible but of course I would prefer he pooped like everyone else.......in silence, and nobody notices....unless of course you don't knock first before entering. Then there might be some screaming, LOL!!!!! Just ask Kaysha and Daniel. I guess they forgot who used to change their stinky butts!
Samuel just came up here EATING AN APPLE!!!!!!!!!! He actually put it into his mouth and is chewing it up!!!!!!! OMG! First time! He says he likes it! Oh, I might jump up and down! This would be such a wonderful food for him to decide he likes and to eat regularly! Kaysha has been really good lately about helping him try new foods in creative ways and she always has him come ask me first if he can eat something. She asked if he could try an apple with peanut butter and flaxseed and I just assumed he would not eat it. So of course I said sure, let him try it.
Well, he and everyone else need to hit the sack. Me included. 5:30 came early. Glad the day is almost over! Much love and praise to God!
2/17/07
Fitting In.
I have spent this past week trying to figure out where we "fit in." We went in to visit with our Oncologist Friday. We haven't seen him since October. What is that, like five months? He was happy to see us and I told him why we had not returned. "I needed a break from doctors and all this." He knew why already. I asked him if Mary had shared with him what happened with Levitt and what was said. She had. I said, "That day was wonderful and horrible all at the same time." His response was that Levitt acted like WE did this to Samuel, as if all of this has been OUR fault. He was shaking his head in disgust, as we still are.
No, I never heard from Levitt if you have been wondering. The events of the latter half of last year have changed everything. Whatever hope I had left in good decent doctors who cared about patients has been most certainly shattered. Every doctor visit we go to now, I wonder when the other shoe will drop. It just makes me never want to see any of them. This now feels like a battlefield of us vs. them and there is no longer etiquette or a rule book. We all do what we want, say whatever we feel like, no matter who gets hurt in the process. If they don't understand what you are doing then it MUST be wrong and the more confident you are, the more crazy you are perceived. I am thankful we have a couple MD's here we can trust, but I still wonder about that other shoe. The events of last year crossed a line that in my mind, cannot ever be gone back on. Things will never again be the same.
As you know, we went to see our Onc to get morphine. I took my really old bottle with about two doses left in it to "prove" that we don't abuse it but it was not necessary. Our Onc came over to ask what he could do for us and I asked, "Can we get some morphine?" He says, "Yes." Cool, that was easy. I told him about the Pain Team appt in March and how unhelpful that was. In Tacoma, Oncologists do their own pain management so that was a bonus for Samuel. Some other interesting notes...I shared with him that Samuel has now been off all chemo for over a year and then asked him if he though Samuel would still be with us today. His answer....No. I don't think we have one doctor who believes Samuel is actually cured of leukemia. I don't think we have one. Maybe the GI but who knows. Our Oncologist still believes that he will relapse and die. I asked him then, "How do we fit in here? Do we fit in here?" Meaning, when do we need to be seen. Do we need to be seen at this point. Everyone knows that no matter what the labs show, we will NOT do chemo so they have nothing to offer us medically. He wants us to come in every other month or so for labs.
Privately in an exam room, he asked me if Samuel has had any funny bruising, or bone pain. No, he is way too busy having butt pain to have any of that other. So, he obviously is waiting for you know what. He is waiting for that desperate call. I just don't think they know what to do with a person who doesn't even worry about cancer. To his credit, he is a very compassionate person and wants to help however he can. Mark reminds me that they probably ALL are surprised when ANY kid lives. They probably think they will ALL relapse. His opinion is probably is not subject to just Samuel, but to all the kids and according to Mark, I should not take it personally.
Mark was talking about accessing Samuel's port and how he always worries about it being a main line and any little germ getting in there could make him sick. Our Onc was quick to point out that given the barrage of things that have happened to Samuel's gut, it was a miracle that he has never gotten some horrible infection so obviously his immune system is able to take care of things. I was glad he recognized this because it means he has at least noticed that Samuel has NEVER gotten sick. Do you know how rare this is with a child who has had chemo, and as many severe issues as Samuel has been through? He has never been hospitalized because of illness. Glory to God for giving us the tools to keep him well in spite of everything else. I am glad that SOMEONE here has noticed.
Our Onc checked Samuel's labs before we left. It took him a minute to verbalize them to me. "They look.....normal!" I guess he was surprised. I guess we live in a bubble and everyone is just waiting for it to pop. That is truly sad.
WBC 9600
ANC 3700
HCT 35.4
PLT 379k
On the drive home as Mark and I discussed the appt, he hit on a key issue that keeps rolling around my mind. "Chemo slowly destroys the immune system. Even after chemo stops, the immune system is crippled. If they do too much damage to the immune system, even one cancer cell can cause a relapse." Now I have known this all along but today it makes me wonder why NO attention is given to rebuilding the immune system when treatments are done. For many kids, chemo IS the immune system and when treatment stops, they go a few months and then relapse. And everyone seems shocked! What did they do to make things different for the body? What did they do to support the body and start the process of healing and rebuilding the cells which are destroyed? I can tell you that I can count on one hand the parents I know who have done things after treatment ended, or even during treatment when the child was in remission. These children whose parents had the foresight to understand that something was broken, and it needed to be fixed, THESE CHILDREN are STILL in remission. Interesting, eh? In my mind, it makes sense. You break something, you fix it...that is, if it is important. Cancer is the manifestation of a broken immune system, which is then further crippled by chemo. If you expect something in the body to change, to react differently, you have to react differently. Understand that your body can only function on the fuel you provide. I reread "The Maker's Diet" the other day because I am constantly refreshing my mind to what we need to do. I highly recommend it. Life and death comes out of wisdom and sometimes you have to NOT fit in to save your child's life. We are dealing with, every day, life and death for Samuel. Oncologists know they are compromising immune systems every day. It is their job to "break them." It is apparently not their job to help fix them. When people finish their protocols, they often wonder if their child got enough....that is your gut (or as Kristina says, gut feeling = Holy Spirit) telling you that now it is YOUR turn to help your child's body rebuild. Except for most parents don't know what to do, don't believe in alternative medicine, or just blindly follow the flock. Sad! Any Naturopath can help you do things to rebuild your child's immune system. Holistically, there are SO MANY options. I am just so tired of watching kids die that SHOULD NOT have to die. It makes me so angry that people don't know there are things they can do to help their child while ON chemo as well as off. Had we known in 2004 what we know now, Samuel would no doubt still have ALL his body parts. We would not be living this hell daily. And personally, I don't want to bury Samuel anytime soon. I don't want to go in to get the "bad news." I want to continue going in and leaving them surprised that my child is still thriving. I wonder how many more years I will have to take Samuel into see his Onc before they believe he is cured and wonder or ASK what we did.
We don't fit in. I hope that someday we can be free of doctors, naysayers and that Samuel can be free of pain from this tragedy. He has received morphine a few times this week again. As I told the Onc, it is the Rescue Remedy for 12:30am. At that point, we need something that works NOW. We are on the schedule for 10am Tuesday with the GI doing the EUA in Seattle. I don't look forward to going there AT ALL. Knowing how "helpful" some MD's are there just makes me mad all over again. I will be glad when this appt is behind us and hope we don't need any more people looking at Samuel's rectum, etc. That part of his body just needs to behave!
Topping the "Stupid" list for the week, the Pain Team sends me two packets of questions to fill out for our appt. Now, supposedly they read Samuel's chart. Yet they send one huge packet for Samuel to fill out. As if. Kaysha or Daniel, that would be different obviously, but one for Samuel. The other one, even fatter is for us to fill out. It asks things like, "when your child is in pain, how do you react?" "Who else in the household has pain and does the child notice?" (as if he is mimicking someone else's pain. This would be applicable to Anna who walks around saying HER butt hurts." "What day of the week does your child hurt the most? What week of the month? What month of the year?" Some of these just seem silly and we wonder if they even LOOK at this form at all. Why bother to "read the chart" if you are going to send out a questionnaire full of stuff that doesn't apply. I spent ten minutes with the Pain Service in Portland and they had a plan that WORKED. It wasn't that hard. "How would your life change if your child's pain suddenly stopped?" Does that mean stopped because the problem got fixed? Or stopped because of good pain control options which we seem not to have? "How does your child react when he is in pain?" How about screams bloody murder, totally inconsolable, and scared to death that you might touch his butt. How about wakes up the whole house because it sounds like he is being stabbed. In their multiple choice list, none of these were choices I can pick. And you don't get used to that scream, by the way. He scared the living crap out of me this morning at 7am with this piercing scream. I think it ruined my whole day because certainly I have been worthless to get much done today. This is yet another appointment I am just NOT looking forward to. Thankfully, while inpatient in Seattle, the Pain Team has always been very good to Samuel but I am tired of explaining our situation, our choices and answering all the why's. As I told our Onc, they should be able to look at the history, look at today's labs and know why we are doing what we are doing and SEE that he is doing fine. If we just had the magic butt/gut solution, we would have it made. How would our lives change if his pain went away because his gut was restored? We would have a life. We could make plans for the future. We could go places. Samuel would be a happy happy man again, all the time. Like he was BEFORE chemo. There would be no more piercing screams waking us all up every day. It sounds like Heaven. I only hope we don't have to wait for Heaven to get it.
And for the "good" part of the week, Mark found this link for anysoldier.com through one of his favorite blogs and we were able to choose several units to send care packages to. The kids got involved in choosing things to send and Kaysha sent several soldiers letters. It always feels good to give and be thankful and is a great way to raise awareness with your children about world events and freedom. Regardless of how you feel about the war, these soldiers are doing what has been asked of them and we will proudly show our support and thankfulness. I feel a slight kinship to them being in a foreign land, doing things that we can not even imagine. Only those who are there with them KNOW what their lives are really like. Certain things can never be explained. Certain lines that are crossed can never be gone back on. Lives will never be the same, innocence is lost and with that comes an inner sadness that only time can heal. Those soldiers who come home will not "fit in" for a very long time if ever. I don't know their reality but I know mine and in my mind, there are many similarities. When we brought Samuel home from the hospital in 2004, I felt like I had been away at war and found it hard to function as a "normal" person for quite some time. And now again, suddenly life feels like the aftermath of last year's war. How do we fit in? I am not sure I want to. Funny how the dust settles on the outside yet on the inside the war rages on. People don't see, they don't want to see, they don't understand because they haven't lived it. It is hard to explain but these last two months have been a very strange time for dust settling and trying to move on. Strange, it would seem a person would be "over it" by now, but even my dreams haunt me. Distrusting most all humans is a pretty harsh way to live sometimes. It has been hard to write updates as of late because I feel so much frustration working it's way out so if you wonder why there are so few, that is why. So I got this all out "on paper" which helps get it out of me, and I hope that means tomorrow I can get something accomplished in the household.
I know how much kind gestures and notes from complete strangers mean on a very bad day. I know how many things LOVE can help make right. A kind word goes a long way in the dark times. It is those things that pull you through the times when it seems everyone is against you, and no one believes in you. Thank you to our troops for all you do. We are thankful for the opportunity to make your day brighter.
2/11/07
Angels on Earth.
Rose S. Thank you! Mark was surprised.
Our new electrical panel was installed this weekend. By an angel on earth. Rarely does it seem I come across a person with not only work ethic, but kindness and morals as well. I guess I have come to expect professional assholes if you want to know the truth. The man who has come to our home several times in the last two weeks, assured us that our house would NOT burn down while we were waiting to get this done, ended up charging us next to nothing. He doesn't know us. He has no clue what our lives have been like. We ended up paying him more than he asked and were happy to do so.
Saturday was a strange day and one I won't soon forget. This man knocked on my door around 10am. Mark was not home at the time and we weren't exactly expecting him. In other words, the house was not properly cleaned up. I met him at the door, poked my head out to let him know Mark was not here and that he needed to call later. "I have four kids, the room is messy, the furniture is not moved and I am stranded here. This is my life." I hoped he would get that he just needed to come back. I was waiting for him to get a little upset actually since he seemed to think he had an appointment. He asked if he could come in and just do some measuring and some prep work but NOT take out the power until Mark was home. I ended up letting him in which is a BIG thing because honestly, very few people are let in the front door and into our daily drama unexpectedly. People stop by selling things, or whatever and THINK they are coming in, but they are not. In fact, the day before that the Fire Marshall come over thinking he was coming in to do a fire inspection. He looked into the house and asked, "Is this a daycare?" I told him he was NOT coming in and that he could speak with my husband. Mark said he looked rather baffled when he went out the door and shut it behind him. Well, he ended up leaving once he figured out we are not a daycare and do not have house hold employees. The city of South Prairie needs to get a grip! So that all said, I actually let this stranger into the house, into our drama, into the main room where we all reside during the day. The room Samuel sits in most of the day, half naked I might add because pants just make it harder for him to get to the pot in time. The room where everyone plays so it needs an emergency clean up when people come over. Next to that the kitchen where six people eat three meals a day and I hadn't gotten to the dishes yet. I did my best to rush kids around doing emergency clean up, I am sure you all know the drill of emergency clean up, except usually you do that BEFORE people are in the house. Samuel is sitting in his chair telling "the nice man" that, "well you know, my butt is better." Oh, yeah, like the nice man cares about his butt or even knows what he is talking about. We clean up a bit, and Samuel is talking his ear off all the while he is cutting a fresh hole in the wall. I hook Samuel up to his food and he asks me what kind of formula Samuel is on. Daniel shows up and he puts him to work immediately opening the box and getting things out. Kaysha gets Anna dressed and then Anna comes out to talk the nice man's ear off. I discourage this behavior and he tells me that he has only grandsons, no granddaughters and he was actually enjoying her. He said he had just finished breakfast with all his grandkids before coming over and talked about how important they were. He was kind to ALL of my kids and for the most part, they were all extremely well behaved. He called me "Mom" when he was talking to the kids and "Ma'am" all the rest of the time. He asked to go from room to room and outside to check the meter. He was like a grandpa to the kids and stopped to visit with me from time to time. In a matter of minutes actually, he seemed to go from stranger to someone we had known a long time. It was very odd. He finished up what he could do before Mark arrived and all the kids crowded around to tell him goodbye. Anna gave him a hug and asked when he was coming back.
Later, after Mark arrived home, he returned and went about changing out the unit. The old unit has burn marks from how hot it has gotten in the last few months. We were without power around 4 hours Saturday afternoon. And again, he was absolutely kind to the kids who could not help but stare from time to time. We continued to discourage this but he never seemed to mind the company. He had excellent hearing, note he was a grandpa, and chimed in to conversations we had from time to time always with something quirky, funny or thoughtful. Of course, Samuel ended up having a painful poop and getting into the tub right in the middle of it. I explained to him that Samuel interacted well with adults because he has spent so much time in hospitals. He seemed to understand and told me he knew lots of "survivors/" He visited with us a bit before leaving and made us all laugh with his stories. My kids ALL thanked him for coming. Mark and I thanked him because literally he gave his time for a fraction of the cost it should have been. I almost cried.....don't tell Mark. After he left I realized that he reminded me of Delma's husband, Mac. I have never met another person on this earth like Mac, ever. Until now. It was like God gave me that day, and touched my kids lives with a vision of their great grandfather. He shook everyone's hand before leaving and told each of the kids it was a pleasure to meet them. He kissed my hand. I am writing all the "boring" details here so I will never forget the day I received a visit from "Mac." Someone's children are very lucky to have him as Grandpa.
After he left, Mark and I pondered.......why would a professional do this so cheaply? I mean, I know why we would work cheaply. Because we either needed the money BAD, or knew the people. He quoted Mark pricing on the phone without even meeting us. The only other thing I can think is an angel on earth. So based on how he conducted himself in our home, I will just go with that. Thank you Mr. Harding! Even though you will never read this. May God bless you and yours.
Samuel continues to have good parts of the day and bad. We made progress tonight however, with him putting the butt cream on his own butt. "Oh, it is not so bad......" Glad he finally figured that out!
Children's in Seattle called with out appointment to see the Pain Team. March 22nd. I could not even contain my disgust on the phone. What do people do if they REALLY need help? Live in pain, obviously. I will be making an appointment with our Onc asap just so we can get more morphine at this point.
We had a nice day today. We took Anna and Samuel to the bookstore and they were actually well behaved enough that Mark and I were able to pick Kaysha and Daniel out some new books and browse a bit. It was really fun to go pick out their books and watch them plop down and start reading right away upon returning home from Mark's parents. It is really the little things that keep you going sometimes!
I am feeling better today. I received a word from God today in a very unexpected way and at a very unexpected time. I often wonder why when we pray and ask God to do things, He doesn't act immediately. Why do we have to wait for..........whatever. Especially if we really need a miracle NOW. God is not always able to act if you have left the door open to Satan in your life. Whether that be in your previous actions, something you are doing/not doing now, or just worry and lack of faith. In layman's terms, you have messed something up and you need to fix it or repent of it, or stop doing whatever "IT" is first. BUT, here is the thing.............GOD WILL WORK WITH YOU NO MATTER WHAT. If you want change, you have to change. This has become my anthem this year I think. We have certainly spent years now doing the same things and getting nowhere. We want change and we are willing to do things God's way to get change. Certainly we have learned that the world has nothing to offer us in way of hope or help. This was really an answer to one of the most melancholy questions I have had in the last week. It has shown me how to be more effective in prayers not only for us, but for others. God is so faithful to answer your questions. What an awesome way to wake up today. Always remember to pray. Prayer changes things. I have asked God today, what are the things I might be doing or not doing to bind God's hands in our lives. Forgive me, Lord, show me, and I will do them no more. Show me the way that I must go, and I will.
Please continue to pray for Jillian and family. Thank you! Much love.
2/9/06
Melancholy - a feeling of thoughtful sadness.
Someone sent me a note after the last update saying I sounded sad. No, I am melancholy. That word has reverberated around my head for the last few days. Days continue to pass, things seem to stay the same. The more we want to take steps forward toward our goals, the more it seems we slip back to where we started from looking up at that steep mountain which always seems to lie ahead.
I am melancholy thinking of all the destruction to families caused by cancer especially THIS year. I still feel especially sad for Baby Donovan's family. What a tragedy. What a loss. They have lost nearly everything to a disease which "cure" offered very little hope. A disease where your choices are like deciding whether to slit your throat or jump off the cliff. Every choice is painstakingly awful, difficult and unbearable. Yet families are faced with these decisions each day. Families are shredded hanging on to a thread of "hope." It sickens me. We walk around waiting for our number to come up. I had a friend tell me, "When you least expect it, expect it." She wasn't talking about my baby getting cancer, but the phrase has never left me.
I am melancholy because one of my best friends on this earth who is NOT my husband, aka, Kristina, has shared with me that one of her best friends now has a child with a life threatening tumor. A few days ago, this three year old girl was fine. Suddenly, they don't know if she will make it. And none of us can do anything to help. It is as if we are all helplessly watching a bad movie unfold and you can cry all you want, it changes nothing. We pray. We seek God. We ask why. Life is cruel. Life can change in an instant. Your precious baby you put to bed tonight could die tomorrow and you are helpless to stop it. It all seems like a sick joke and I just want to wake up.
I have been in a place with Samuel where people were uncertain if he would make it. Many of you prayed us through. Please pray for my friend Kristina and her friend Katie, and daughter Jillian. Also for the rest of their family. This is serious, heartbreaking and only God can fix this.
These children weigh heavily on my mind this week. There are many others, suffering, with very little hope. Families being torn apart, losing everything to cancer. I look around me and wonder if we will ever pick up the pieces of this nightmare. When does the suffering end? The other thought that prevails some of this horror is that prevention is SO MUCH better than cure. What can we do to prevent our children from being the next cancer victim enslaved in a hideous world of "treatment" and "trauma." Where is that information when you go to your child's well checks? Does your doctor tell you the "signs" to look for which might indicate a deeper illness in your child such as cancer? Does your doctor tell you how to improve your child's immune system so they get sick less often? Or maybe the more relevant question is, do they even know what to look for, or how to help beyond the rushing as many patients in and out as possible that they do daily. God knows that the day we took Samuel in, the PA actually told us he had the measles simply because we chose not to vaccinate. Fortunately, our MD showed up at the last minute and thought otherwise. We screen adults for cancers they are at a high risk of getting. If on in every 32 children will get cancer, I wonder if some screening should be done for them as well. Right after Samuel's diagnosis, countless people asked me, "How did you know?" How did we know Samuel was sick? Well, looking back the signs were there all along. He got sick, he never got better, and it was over a few months time. During that time, we were too busy with "life" to notice and take it into account. With childhood cancer on the rise each year, I think our doctors should spend some quality time having these type of discussions with families. Maybe some of the millions of dollars spent on cancer treatment could be spent on research for prevention. NO child should suffer this fate. NO child should die. NO family should be torn apart. Unless you have lived it, I cannot even explain to you the things we have lost in this journey. Not just tangible things, but friends, jobs, opportunities, our lives, our dreams, our goals..... Our other children have lost their innocence and taken a back seat many times to Samuel. We have struggled to balance this life we have been handed in ways that have never reached this journal, and never will. You do NOT want this to happen to your family. These last years have been the hardest years I have ever lived and I am certain I will have a shorter life span simply because of the stress of it all. The whole thing just makes me so angry. Families are slaves to a system which offers little hope and invariably steals everything from their lives. And they have very little choice in the matter. I wonder if people will ever wake up.
We, as a family, do things everyday to reduce our risks of ever having to make these choices again. Is it enough? There are so many factors in life which might cause cancer but the bottom line is whether a body's immune system is strong enough to kill it on it's own. If it is not, those cells will find a weak spot and grow until they become a tumor. Or the immune system will malfunction, as is the case in leukemia. Is what we do enough? Time will tell. Something went wrong in Samuel's body almost three years ago. We do not know why or what triggered but I care not ever revisit it. I don't want Samuel to become a statistic. That meant drastic changes had to be made to the environment, both inside his body and inside our home. Something allowed this to invade, and only change changes things. We pray it is enough.
February 15th marks one year that Samuel has been free of Chemo. I am certain there were and are many who saw this decision as a death sentence for Samuel. We saw it as life. We are almost at the one year mark of choosing "life." And next year at this time, I hope I can look back and say Samuel had a good quality of life, not the poor crap he has been dealt this last year. I am thankful to God always for showing us the way and helping us make the hard choices. I have never regretted our choice, only that we did not make it sooner.
And on to Samuel. The pendulum continues to swing back and forth. Either it is really good, or it is absolutely awful. Last night was a morphine night. Daniel came down to wake me up at 12:30am because Samuel was screaming in pain. He screamed for another 30 minutes while I laid by his side waited for the morphine to kick in. There was nothing I could do for him. I wondered if the screaming bothered Daniel or if the older kids will someday have nightmares of Samuel screaming and everyone being helpless around him. I think it was something he ate. We are pretty much having to test every food out as if he was a baby which limits his already limited choices. And of course, he doesn't understand why one food was fine yesterday and not fine today. He has had a few good days this past week as well. One bad one can just ruin everything however. He did not seem to have any adverse reaction gutwise to the morphine so that at least was a bonus for today. If he can only poop three times a day or less, we seem to do okay. Any more than that and he just gets really sore. Add really sore to overtired and it seems impossible to comfort or control the pain without narcotics.
It would have been nice to know what exactly is causing all the pain he says is on the inside of his anus. But it would seem the hospital never got the order for the EUA this past week and it was never scheduled. So it did not get done. And topping that off, our GI is only in Seatle every other week so now it is not on until the 20th. UGH! And it seems no one from the Surgery Team there wants in on the EUA. Hmm. Coincidence? I think not. I thought about seeing them again and it made me feel sick so if they don't show up, it won't hurt my feelings at all. We won't be having them do any more surgeries anyway. Our GI only wanted them there as a formality. And the Pain Clinic seems to be booked into spring so apparently Samuel is screwed on that front as well. I have a few more doses of morphine and then I am out. So I guess we will need to go see our Onc soon and get an Rx at this point. It will be faster and at least we know it works. I noticed someone from Tacoma checked the website this week so I guess they remembered we haven't been around.
I hope to sleep better tonight that last. I pray Samuel does not have any issues tonight. Poor Daniel. Mark thinks they are all used to Samuel screaming like that. Last night it felt like we were the only ones in the world. I felt completely alone waiting for the pain to end. Listening to Samuel scream that his butt ALWAYS hurts and it is never going to stop hurting kills the depths of your soul in the wee morning hours. Mark said he would have been shocked if the entire neighborhood did not hear Samuel.
So, on that melancholy note, I am going to head to bed. Please pray for my friends and families in need. Only God can change things. Our hope remains in Him always.
2/3/07
Today.
There is nothing better than Samuel waking up in a dry clean bed.
There is nothing better than Samuel's butt NOT oozing ALL day.
There is nothing better than making Samuel his own "Miracle Butt Salve" and having it work.
There is nothing better than Samuel NOT needing five baths today because I was able to wipe his butt.
There is nothing better than Samuel NOT screaming for help when he has to poop because, oops, it is too late.
There is nothing better than Samuel feeling happy all day because for once, his butt didn't hurt.
There is nothing better than Samuel making it to the toilet every time he has to poop rather than just getting there and missing the pot by inches.
There is nothing better than Samuel sitting up at the table and eating dinner like a "normal" kid with us.
There is nothing better than Samuel getting tired and ASKING to be put to bed at 8pm..
Just ramblings off the top of my head. I cannot say the same for yesterday, or the day before or the day before. The pendulum continues to swing back and forth. But when the day is good, it is worth mentioning. The good almost eases the fact that the kitchen floor is indeed ruined from water damage. The good almost covers up the fact that the fishy smell from the dryer is not the dryer at all. It is our home's main electrical panel getting fried. I think I liked it better when we assumed it was the dryer. Now we are looking at paying for a major repair and of course, it is something Mark cannot do. One of the few things he cannot do.
Life is overwhelming when you are trying to troubleshoot finances, four kids, a business, and Samuel. Not to mention all the other things I do in a day. Daniel was doing a lesson in school the other day and it asked who his family doctor was.......Mom. It asked the name of his teacher.......Mom. Yes, we get a lot done in a day but I am exhausted a lot of the time due to constant multitasking. Today has been a much needed relief knowing that the hardest part of my life, caring for Samuel, was easier today. What has changed? Who knows. His gut tonic? Perhaps. His garlic.........that boy's body does LOVE garlic, there is no doubt about that. Luck? Prayers, all of the above? Certainly. What does tomorrow have in store? I pray more of the same. I could get used to Samuel feeling better. It would really lighten my load. There are so many things we would like to do, as a family. You know, like have a life. It would be great if someday, Mark could go back to work outside the house. It seems impossible at the moment with all of Samuel's continued medical needs and appointments I cannot drive him to. I keep telling Kaysha that I am just going to LOVE her 16th birthday. That means freedom for us because there will be someone else besides Mark who can drive. We won't be stranded at home anymore. It would be great to move to the place we are dreaming of. It would be great to be able to take the kids places and not have to worry about Samuel's butt and what happens if........ It would be so nice.
We did not go to Children's this week or see any doctors. I did not talk to any doctors. I am assuming they will be getting Samuel on next Tuesday for the EUA with our GI. I called the Pain Service who said they do not see patients until they read their charts. So in that case, it might take weeks to get in with them. I am so glad we did not need them today. But what about yesterday and the days before that? What about tomorrow and the days to come? I guess it is a good thing that I never give up looking for things to help Samuel because no one else seems to have time to.
I haven't had much time to update because the time of night I enjoy writing has left me quite tired lately. Samuel is a full time job most days between feeding him, caring for his butt and trying to ease his pain. I decided a couple months back to pursue education in Clinical Herbalism so that I might be better able to help Samuel myself since it seems we simply cannot afford to call the ND every time I would like. I guess the natural progression in our saga is furthering my knowledge in what I already do every day so I can make better more useful decisions for helping Samuel's body heal and repair itself. So on top of everything I do on a daily basis, studying, class work and working on our herbal apothecary has taken up a lot of my time. It is an investment in our future, something I hope to someday do professionally. God continues to light my path to Samuel's complete restoration. If anyone is going to be able to improve Samuel's life at this point, it is God and us.
On the same note as above, there is nothing better than making something out of God's plants which is actually helping. This week I made my first herbal salve, "Samuel's Miracle Butt Salve." It is helping! He is still very concerned about me getting it on, but once it is there, he forgets all about his butt hurting. And among other things I did this week, I made him some underwear. Two ply hemp fleece undies which help soak up the butt oozing that regular underwear just don't even come close to absorbing. When we came home from Portland in December, I dyed all his white undies because there wasn't one pair that even looked remotely clean. I never noticed it at home of course. It wasn't til we were there and I was trying to figure out what he would wear to the OR that I realized that he had nothing suitable. So they all look fresh and new now, but are worthless for butt issues. I tried our menstrual pads but they did not cover back far enough. Now, Samuel is thrilled because he does NOT want to wear diapers. He calls them "Pull Ups." I think they will really make life better for him because he won't have to change underwear every five minutes or be stuck in diapers all day or when we go places. There is nothing better than making him something that is helping. It is all about the little things....... Little things that help bring hope that the big problems will someday be behind us.
Psalm 25:5 Guide me in your truth and teach me for you are God my Savior, and my hope is in you all day long.
Praising God for a GOOD day. Much love.
1/28/07
Well, praise the Lord! In the last 24 hours there has been a major turnaround. Samuel went to bed last night for the first time in what seems like weeks without crying himself to sleep because of pain. Samuel's butt did not ooze at all yesterday. His underwear remained clean all day....and I was sure to look every hour or so. Samuel's poop was the most normal looking I have seen in again, weeks. And he only went twice yesterday. I was able to look inside his anus a bit and I see some irritated spots on the inside but he says the outside still hurts more. The outside is healing and thus, itchy. We started Samuel's Miracle Gut Tonic, as Mark labeled it, on Saturday. I don't know if it is miraculous yet, but calling things that be not as though they were, as soon as this jar was marked, things improved significantly. And then there is Mr. Garlic. Samuel got the entire bulb in a 24 hour period at the same time we started the tonic, so hmm. Both things heal and restore over time which is the whole point of herbs. To heal and eventually return to a normal state. So we thankful for the huge change today and pray that it continues.......forever. Samuel also ate some foods yesterday he hasn't been able to eat for awhile so he was pretty happy to not be told no for once. Thank you for your prayers!
For I will restore health unto thee, and I will heal thee of thy wounds, saith the Lord"
(Jeremiah 30:17)
We continue to pray this verse. We know that the Word does not return void and God is faithful to answer.
1/26/07pm
Our visit with the GI was helpful and she restores my faith in MD's with her compassion and concern for Samuel. It is certainly something I am not used to seeing or feeling and is refreshing. She is going to do a sigmoidoscopy either next Tuesday or the following, depending on if there is room this coming week. We will have this done in Seattle then and she is taking over being the "butt doctor." We haven't been to Seattle since July so it will be interesting I am sure. We will have to go visit some of our RN's if time allows since we haven't been there in so long. It will be really nice having this GI look since she is the only one who agrees with us in that we DO in fact have a problem. So she will be meeting with us in the OR and also having one of the Seattle surgeons join her. I told her that we did not want Healey. Her response was, "Healey.......he is a TRANSPLANT surgeon. I am sure if you needed a transplant, he would be fine....." Where was she when we needed her? Glad to see her opinion of him wasn't any better than mine. Perhaps she read some of his off handed coments in our records.
She can then determine if his anus is the correct size and help decide a course of action to keep it that way if necessary. It will also be nice to know if there are any hemorrhoids or fissures. I guess I am looking forward to having someone who gives a crap look at his butt for once rather than someone who is just doing their job. This will be refreshing and not having to do Portland in one day is a much needed relief for us all. The other thing I find most refreshing about this doctor is that she doesn't mention cancer at all. Doesn't ask about labs, doesn't ask about oncologists, she KNOWS. She gets it.
Speaking of Oncologists, I realized the other day that we haven't been back to ours since October. I wonder if they miss us. I have e-mailed with Mary so she knows where we are and why we haven't been back. Going for another EUA just buys us another month of free port maintenance so I doubt they will see us in February either. Maybe March then. Maybe June. I don't know. It is wonderful to be away from that and not even worry.
Today Samuel is 106cm tall or 3'6.5" tall and 42 pounds. Anna is 34 pounds. Anna is just about three years old. Samuel was 34 pounds on his second birthday. It seemed like Samuel was going to be a big boy, like Daniel who is HUGE. Now, he is probably going to be more average.
She is also referring Samuel to the pain team in Seattle so we will set up a consult with them. Hopefully we can get some good solid acute pain control without GI toxicity especially if we are going to continue having days like these. We need to see Neuro too. Soon anyway. Mark says, "You know they are just going to want to do surgery, right?" Yeah. It is a real pain.
She also ordered a stool sample for C-diff given the acid content of Samuel's poop and in her opinion, the only reason for that is bacterial overgrowth. I doubt this will find anything, but at this point, we have certainly tried everything else. I forgot to ask what kind of bacteria you get from picking your butt, itching your butt and not exercising proper hand washing care, then eating. It is such a normal thing to walk into a room and find Samuel with his hand in his butt that I don't even think about it as being a potential issue. Then there is getting in the tub to get clean and pooping instead. Maybe we are missing the REAL bacteria. I would think if this was really the case, he would actually get physically ill, but then again, this is Samuel, who does not follow the norm.
Lastly, she offered a different med that has successfully worked on another child with "pseudo obstructions". This child has normal anatomy and has not had the severe GI issues Samuel has had however. It seemed hopeful knowing it is helping someone else, right up until I came home and looked at the actions of the drug and the possible side effects. Now I am not so sure I want to use it. So I am going to wait until we see her for the EUA and discuss if further. I also have some other things I want to try first. Namely, the "garlic treatment." Previously, back when Samuel had the "air bag", he got the garlic treatment all the time. If you want to have boundless energy, (and no friends) eat LOTS of fresh garlic. Thankfully for him, he has a tube. He reeks of garlic so bad that you can smell him coming. But at any rate, if there is some bacteria in there, it won't survive the night. When we were able to use garlic without worry about how it would come out the other end, he had very few issues, never got sick and was the Energizer Bunny. At this point, the consistency of the poop and acid has been so bad that I don't think garlic will have a negative effect. We have some other things we are trying but it is way too soon to tell. I want to find the root of the problem, not mask it with medications with potentially risky side effects.
Right now, the one thing that IS helping is herbal infusions in the bath. Witch Hazel Bark has made a nice (interesting colored) bath for Samuel's sore butt. He might get in crying but as soon as he is in, he is soothed and happy. This is a first. The bath always helps, but never quite takes the edge off.
For I will restore health unto thee, and I will heal thee of thy wounds, saith the Lord"
(Jeremiah 30:17)
This is my prayer for Samuel tonight. Can you all pray this verse over Samuel with me? Much love.
1/26/07am
Briefly, heading to the GI today. Samuel woke up in a huge puddle and could not walk. We hope she will have something helpful to offer.
Mark's sister came home from the hospital yesterday. They think her heart attack was a side effect of a migraine medication she takes...........I am sure you all know what I think about that! And topping that off, Mark's sister's mother in law DIED from a heart attack the day after she had hers. Please say a prayer for her family.
You can join Samuel's Announcement List to be notified when updates are posted. This should spare a lot of you who constantly refresh the page.
1/23/07
I have been going to post an update for days now. But the words have escaped me. In the last week and a half, things have gone downhill with Samuel. In short, his butt. Of course, what else? It would seem that about once a month his gut for whatever reason just decides to shut down and it takes a week or longer to get things back to normal. We have just gone through some of the worst days in a long while. Morphine, complete butt broken out, total incontinence, screaming misery. Things that help one day, such as the ND's magic solution, don't help the next and in truth, if Samuel would never every put any food into his mouth when things are like this, it would be so much easier to deal with. But of course, like you and I, he would like to enjoy food. Even if it is just cereal. He is mad at me currently because I won't let him eat. I just fed him via the tube, but it doesn't matter, his mouth is hungry even if his tummy is not. And he just reeks because his butt is oozing and we have run out of undies that were clean because we could not keep up. Anna is basically potty trained, even during naps, and he is wearing diapers day and night. It is not fair.
The good news is that his butt actually stopped bleeding. Of course, he stopped pooping as well. We go see the GI Friday and I am just going to see if she can do an EUA here rather than go to Oregon at this point. So much time has elapsed at this point and after the last weeks, none of us wants to go that far with Samuel's butt in the state it is in now. Maybe whatever the problem was in there got irritated enough to cause all the hell we have endured in the last week and now healed up. The entire outside has looked terrible. One one day, Samuel could not even walk because just his butt cheeks rubbing together was more than he could stand. That was the day I put him into the tub to get clean and feel better.......four times......and he pooped accidentally in it three times. That was the day I gave up on natural pain remedies and went straight for the morphine which I cannot even recall the last time I used it at home. The day after that, he stopped pooping, which was a relief but then became a new problem.
So, I am trying to get a grip on reality here. Samuel had the "miraculous" surgery. Things should be better. Theoretically. Well, ever since this surgery, the intense antibiotics and pain meds his gut is even rejecting the things that worked previously to halt this devastation. Obviously opening up his anus is a big step in the right direction and I am happy we do not have to worry about it closing down but I just don't get why we cannot get any pain free days. I don't get how one day things are fine and the next a living hell. All because Samuel's gut decides to stop working or become picky about what he has last eaten. We are picky about what he eats, but now it just looks like he should not eat at all.
I have had the same headache for the past three weeks now. It seems to improve when Samuel improves and gets worse as he gets worse. It has been difficult to get things done around here. I haven't responded to many e-mails that required long responses so if you have asked something, if you could just ask one question at a time per e-mail, I find that easier to respond to at this point than long lengthy discussions. Sorry. I have my hands full here right now.
My heart is also full and there just doesn't seem to be room for much else to be going on in our lives. Mark's mom just called today to tell us that Mark's sister had a heart attack yesterday. We are still waiting for the findings. Mark's sister is four years older than him, and has a four year old son. So we pray for them.
It has been an incredibly sad week in the cancer world. Baby Donovan passed away last weekend. Those of you who participated in the fund raiser last year might want to leave them a kind word in honor of this sweet innocent child. His family gave up everything to save his life. The cure rates for infant ALL are staggering, between 20-30% surviving to see age three. Most relapsing in the first year of treatment. Donovan had just turned two. A few other children I have followed passed away this last week only adding to the immense sick feeling I currently feel. Medicine, in the conventional sense, has failed them. For a few, medicine killed them because of the devastation of prolonged chemo and continued neutropenia. Yet, we give millions of dollars to research and all they are doing is looking for more poisons. In regard to Infant ALL, Oncologists know the extreme failure of chemotherapy for this diagnosis, and yet researchers are still trying higher doses and longer treatment plans for these babies, under the age of one. Fully knowing that most of them will die from complications of chemo rather than the cancer itself. One would think that if they know that chemo is not working here, they would look for another source for cure. But instead, Oncologists are getting richer. Researchers are getting more and more donations each year helped out by families with children with cancer of worse, families whose child has died from cancer. Each desperately looking to these people to find a cure. Drug companies are getting richer with the rising cost of chemotherapy and little babies are still dying and families are being destroyed all the while holding on to a shred of hope. I found an interesting study comparing treatment protocols for Infant ALL and it ends stating In conclusion, although intensification of
chemotherapy could improve poor prognosis of ALL in infants, three-year EFS is still disappointing and the current therapy is inadequate. Excessive toxicities and treatment related deaths were present in infants treated
by intensive chemotherapy despite encouraging overall results. I found it also interesting and nice that some people were allowed to refuse treatment altogether. I just wonder if Oncologists have real conversations with newly diagnosed infants families about the reality of the disease and treatment for it. They get paid to "treat" so I really doubt there are many real conversations with integrity going on where the prognosis is bleak. They get paid whether the patient lives or dies as long as they "treat." Certainly we have had our share of Oncologists who tried to prey upon our fears in order to keep us on a protocol. We are the ones who have to live with our decisions, not them. If our kid dies, sure they feel bad, but they move on to their next chart, their next victim, and a year later, forget our names. We suffer the consequences of this "medicine" every day our son lives in pain. Where is the support for that? We are not playing their games anymore and so they then drop like flies when it comes to cleaning up the aftermath. This vicious cycle just keeps playing over and over again in all these kids I watch. I think it is time for me to tune it all out. I know how the stories end. I don't want all these kids to die. I don't want to watch the parents given false hope and then having their babies die anyway. What did Baby Donovan's doctors learn from him? Nothing they did not already know. It is all in this study and countless others I found while looking. Most relapse in the first year, chemo is no longer effective, they go on to transplant, transplant fails. Families shattered. Things won't change of course because money and fear are the main motivators here. Things won't change because all research on alternatives to chemo is stomped into the ground. Big drug companies cannot make money off plants anyone can pick and make into medicine themselves. They don't make money off of you choosing a better diet. The farther I get away from the whole thing, the clearer the picture becomes. This study does not even go into late term effects on kids who actually do survive these intense protocols. Getting intense chemotherapy under the age of one has devastating effects on every part of the body and the mind. What are we doing to our babies? What kind of lives are we giving them? We all want to hold on to the hope that our child with cancer will fall into the percentile of children who survive and somehow miss out on the devastating side effects. Where is all the info about cancer prevention? It is out there, but you will have to dig for it. No one seems overly interested in prevention until it happens to them or someone they know unfortunately. No one wants to believe that you give yourself cancer every day by the things you put into your mouth, the chemicals you come into contact with and the water you drink. This is a devastation I care NOT to revisit with any of my other children, family members, etc. We are all about prevention.
The whole thing is sick, sad completely disappointing and probably NOT helping my headache. And I did not even mention the latest boy someone sent me a link for. UGH. So awful. I am so glad we got out of it. I just pray that we can salvage Samuel's quality of life soon. I am not counting any of the days in 2007 as "good" days thus far. But I am reminding God about a certain prayer I prayed so long ago. Either fix Samuel or take Samuel. We cannot go on living like this. Samuel's life was spared. Praise God for his continued guidance for me to know and be shown things that will help Samuel heal. I am not out of ideas or plans, just waiting on the UPS man. This little boy is waiting for his Mama to make him better. This Mama needs him to get better so I can feel better.
Thank you prayer warriors who signed the map!
Much love.
1/12/07
We got a little bit of snow, and then a lot of below freezing weather and now we are basically stuck til it defrosts. The hill that saved us from the flooding is now holding us captive until looks like Monday when the next defrost is supposed to occur. The kids think the snow is really fun. So do the dogs. Both enjoy rolling in it. The joys of being young.
This last week has brought very little change in our lives. Everyone still has this cold/virus thing. It seemed to clear up and everyone seemed to get better, and now we all have different symptoms. Mark has still managed to avoid it and Daniel seems better but Kaysha is worse again and Samuel's seems to go in stages where one minute he sounds sick and the next he is fine. Anna is holding her own and mine is still the very annoying sinus headache. This crap can go away already. I am quite sick of feeling like crap.
Samuel has had another week of adaptation. For the most part, things have remained the same for him. Averaging three poops a day and still bloody to varying degrees. He complains about hit butt, but pooping only three times a day is a huge relief over ten or more. Haven't called Oregon either. I was hoping we would be better by now, and we aren't.
Samuel and Anna have had lots of fun playing together this week and I still stop and watch them because this is still such a "new" thing. It is so awesome to finally see what I have dreamed of every since I was pregnant with Anna, a playmate for Samuel. Kaysha and Daniel join in on the fun too but for the most part, the kids play in two's. It is just nice that Samuel feels good enough to be happy and playful.
Mark accessed Samuel's port to flush heparin through and make sure it was working. Everything was fine so that buys us another month of not having to do anything with it. We know it will be fine if we go to Oregon in the next few weeks. The only thing I have on the calendar is a GI appointment and that suits me fine. It is nice to not have to go anywhere and especially nice to not have to worry about when Samuel's butt is going to close up again.
We spent the week doing more "Holiday" baking and watching all the Christmas shows I taped for the kids back in 2001. Just catching up on all we did not do last month at this time and spending some quality family time together. It is kind of fun to have your own time clock and none of the kids seem to mind watching Christmas shows in January or doing lots of Holiday baking. Today we made orange scones. We made apple muffins and Cowboy cookies now twice in the last week. We made Soba noodles for dinner which was very cool.
Since January, we have gotten back into the full swing of school again. You might have noticed the map near the top of the page. I thought it would be fun for all the kids to see where people are from who visit the site and pray for Samuel and our family. Maybe you would think it was fun to view it too. We would love you to put yourself on our map so please do. If you are too shy to write your name, you can still put up your mark with a zip code or city/state, country.
Other than that, we are healing. Everyone in some degree or another. I can feel the weight being lifted slowly off my shoulders and my burden is lighter. It is easier to think clearly and starting to be easier to stay on task and remember everything I need to do. I keep looking at the dry erase board in my work room and wonder if I should erase it yet. It is still full of names and numbers, from Medicaid, to attorneys, to OHSU doctors, and a few then there is a very old list of orders written on it. I don't know when I will erase it. All this crap is written neatly in my phone book which goes everywhere with me, but yet, I leave it up. I rarely look at it but it has been there so long that it will be strange with it gone. Living the way we have for the past year and a half is not something you forget easily. It is hard to trust people. It is hard to trust what anyone says due to the amount of things I have heard and read in the last year. It is hard to trust that tomorrow will be okay, better than today and that time will heal all of this. But I am trying to learn the lessons I need to out of all this to keep fighting for Samuel. I wake each day and wait almost holding our breath wondering how Samuel will feel today. I have spent a lot of time reading, researching and planning for our future, Samuel's future and his continued health. I pray daily that God show me what I need to do to keep him going, healthy and feeling good. Not a day passes that I don't feel truly lucky to have this wonderful family. Not a day passes that I don't thank God for our blessings. Not a day passes that I am not certain that all our hope is in God. Without God in all this, I would have never had the strength to get this far. Without God, Samuel would not be with us. Without God, we would have fallen apart.
While baking today, Kaysha and I got onto the subject of the night when Samuel was diagnosed with cancer. I told her that on that night, none of those doctors thought he would live through the night. I could tell that until this moment, she did not know that. These children still do not understand just how many times he was close to death. But she really took a moment to think about it and it almost made her cry. Then responded, "Well, I guess God just was not done with him yet." I know that over the next decade we will spend a lot of time explaining all of this to them. And I know that there will be many things that they will hear for the first time, or truly understand for the first time. There will be many moments like today, of realization and I hope that they all are surmised with awe for the Lord and how He always pulled us through and spoke clearly enough that we could discern what we needed to do. We will get through these moments together, as we always have.
1/5/07
Well, of course most of us are now sick to some degree. So much for spending the week relaxing; we are spending the week licking our wounds, so to speak. Thankfully we canceled Samuel's EUA because not only was Anna sick, but he got sick as well.
Anna is getting better with each day. Samuel got sick first thing New Years Day. For him, the virus was not only a head cold but also included a low grade fever and chills which he woke up with on New Years Day. Now while fevers for him now will never compare to a septic fever, typhlitis fever, or CSF malfunction fever, I still hate them. They still remind me of a time when they would NOT go away no matter what we did. The symptoms are the same regardless of the underlying cause: cold hands, cold feet, hot body and head, extreme thirst and insomnia. Well, now we have a new problem.
Daniel came to get me up New Years night because Samuel was crying for me. So I went up to find him shivering with chills and absolutely miserable. I had given him one dose of ibuprofen that morning against my better judgement. Sure a fever is good because it means the body is fighting off something, but when it makes you that miserable, it is not that good at all. I gave him the dose with food hoping to sidestep any GI issues it might cause being that we just got things on track again. Didn't matter. Things were immediately off and his butt started oozing again. That night, same thing. I gave him another dose, again, against my better judgement and the same held true for the next day. 24 hours of oozing and painful poop when it came. So, being that there was no other factor which could have caused this disturbance, we decided that he can no longer get even ibuprofen, for pain or fever. So what then? Giving Tylenol is as good as giving nothing. Aspirin is terrible for children, so say they. I have narcotics but they do nothing for fever. We already know what they do to the gut as well. So pretty much my medicine cabinet is empty as far as conventional items go. So, of course we turn back to the herbal medicine cabinet for both pain and fever and go from there. I don't think his gut will always be this sensitive if the proper healing takes place and lots of time elapses where none of these drugs that initiate this type of reaction are ever used. But I don't know how long that will be and so then I guess we have to make the decision of is pain relief, fever relief, etc worth the 24 hours of GI disturbance for each dose given. 24 hours after the ibuprofen was given, his butt oozing stopped and a day later, GI function normalized again. Vicious cycle! And I can't help but think during moments like these, that there are people on this earth who believe Samuel should still be doing chemo, yet his gut cannot even tolerate ONE dose of ibuprofen without a disturbance which causes enough pain and suffering for me to ditch it and look for other options. I am rolling my eyes here. Huge long sigh!
And the time to discover this problem is NOT in the middle of illness when you are not prepared and cannot just go out and buy what you need easily. So we will be working on that to find out what works for us so we can have something always available and ready to use. Not only that but also to take on any subsequent hospital trips in the case that we need them there. While inpatient, the drug that worked well for Samuel was actually a nerve drug, vs. a narcotic. This worked exceptionally well for him with the only side effect being that it knocked him out for hours. This is how we got our first really good night of sleep and how things started improving for Samuel. Of course, we ditched it and went back to ibuprofen and then the problems started again. The nasty poop, the oozing, which we have dealt with for the past few weeks. Obviously we know we have aggravated it by using ibuprofen and just helped the vicious cycle continue. When we see the GI next, I will have her go over our conventional options for pain relief again and see if we can get an RX for this drug to keep on reserve.
I got sick with this virus two nights ago and have been treating myself with the same herbs I have used for Samuel with good success. I am better today, though it is still lingering. Mainly an annoying sinus headache currently. Daniel got sick last night and his symptoms are more acute. Of course he won't drink tea or anything good like that. Mark and Kaysha are fine as it is now. Still hoping they can avoid it.
Not much else going on. I do not have the EUA rescheduled and will probably call them next week to get it back on the schedule once I see how this virus thing plays out over the weekend. Samuel definitely has a hemorrhoid on the inside because it burst again yesterday and was a huge bloody mess. He was miserable all of last night and woke up today a happy little clam and his butt is again, perfectly healed. Amazing after looking so torn up. Mark will need to do his port maintenance before we go to Oregon since it was last used December 7th and needs to be flushed monthly. We could go in to Oncology and have them do it, but I am still pretty sick of doctors visits and leaving my house for such so I think we will put this off again. Maybe I will be ready in March or something. Maybe June. We have the resources to maintain the port ourselves so we will see. I just want to move on at this point. Get away from all this clinic stuff, get away from the doubters and get on with the life God has promised us. You know, the GOOD life? You know, Restoration? I want to move on with that. While I cannot afford a mini vacation to the beach, I can afford a vacation from doctor's offices as much as possible. The ND wanted us to come visit him this month too, for a "social" visit. Not ready. Maybe when Oregon releases us back to the PCP and GI and we do not have to go back there for another EUA or some other crap, I will feel more like traveling to closer offices. We are supposed to be dilating Samuel's anus daily now, except we don't have the dilator for his correct size and frankly, I am not interested in doing this at all if there is a hemorrhoid in there. So it will be interesting to see what they say. I will be certainly comparing notes with the GI and probably making a new plan altogether regarding dilations. Samuel is pooping once or twice a day when things have been good and according to the ND, this should dilate his anus just fine. Based on the size of the turds, I would say he is right. As long as we can continue like this, I think he will be fine.
It has been a month since the surgery and for the first time in many months, we have not had to worry about his anus closing down. Obviously, it is not. Praise the Lord for that. Praise the Lord we are home together and tonight Samuel is feeling better and his butt has not oozed all day. He has been pretty happy and played pretty well with Anna all day. Earlier I heard them playing monsters and he scared Anna and she came running from the room. She said, "Pooper was mean to me." She ran out to the opposite room from him. In hot pursuit, he went after her and I heard, "Hey, Dee. Look at me, I want to tell you something. I am sorry for what I did to you. Will you play with me?" And off they ran happily to play some more. Adorable! Life is sometimes very simple. Praise Him. Much love to you all.
12/31/06
I am so happy to see this year end. Bye bye 2006. I hope to forget most of 2006 over the years to come. I cannot think of much I care to remember other than our Ocean trip in September which I think of each time we go to Oregon. I would really like to go there in the winter season when the storms are passing through. I want to stand on the balcony and be blown by the wind and wet by the rain. I want to watch the crashing waves while cozy up the fire with my family who will be begging to go to the shores even though the weather suggests otherwise. It would be fun to just go out in the storm and get wet, yell at the sky and run. That sounds like heaven on earth right now. For those minutes in the storm, we would forget all the travail we have endured this year. At the ocean, the sound of the waves is so loud that you can believe that you are the only ones that exist there. And being legally blind, well, that is a bonus because you don't see too many people either so the fairy tale lives on. Dare to dream.
Samuel's body has done a 180 since my last update. He is sleeping pretty well and pooping once or twice a day which is SO wonderful. There is still blood and now the outside has healed up enough that I know it is from the inside. He has been pretty happy obviously because he feels so much better. I am happy to report that he is still just as continent as he was before the surgery. That means, if it is softly formed, he can hold it and get to the pot. Otherwise, he gets about halfway there and then stops right in the middle of the hallway somewhere with it running down his leg screaming "Get me to the pot!" Thankfully, this has been few and far between the last few days. I dare say we have made some real progress with some diet changes and a few herbs for good measure. Probably some of the best formed poop I have seen in the last 16 months. And going once or twice a day is a huge improvement! Thanks be to God for His continued guidance in making this better.
We have decided to reschedule our EUA in Portland which was supposed to be this Tuesday for another week or two down the road. Anna has a little cold or something stupid and we cannot leave her for the 24 hours we had planned on if we went because she is kind of miserable and who wants to be sick anywhere else but home I hope this, whatever it is, doesn't run it's course through the family as well. At any rate, the relief I feel for not having to go to Portland this week and Samuel being better is tremendous! It is amazing how it all seems like a bad dream when things improve and how easily everyone just moves on and puts it out of their minds. Me included. It will be a nice relaxing week fur us to rest and do some Holiday things we did not feel like doing a week or two ago. Anna can recover and hopefully the cold stops there.
Mark took the tire and rim to Enumclaw Les Schuab and the head guy there said not only that the rim was fixable, but also that the tire had simply slipped off the rim and was in perfect condition. He fixed it for us for FREE! There are still angels on earth. Thank you so much! We appreciate keeping this cash more than you will ever know.
So far the kitchen floor is holding it's own so we are optimistic that it is going to be okay. The dryer still reeks however and would gag you. God help you if you were already nauseated because you would puke.
Kaysha and I decided it was time to do the Christmas baking so there have been lots of great snacks around. Samuel likes Cowboy Cookies which I discovered that by altering the recipe just a bit, I can get all kinds of fiber and omega 3's into him and he thinks he is getting a treat. We made a banana cake with cream cheese frosting tonight and it was excellent as well. I am a sucker for the snowball cookies which I made a double batch of a few days back and hmm, it is already gone.
Little Max, aka Little Dum Dum is doing well and adjusting to life with us. Tucker, aka Big Dum Dum is also happily adjusting to his new friend. We have Tucker play with Max several times a day to "tucker" him out. He is a nice distraction for everyone and we all enjoy watching them wrestle and scamper around the house. Samuel likes Max to sit with him when he is getting his food via the tube and basically stuck in a chair for minutes or so. Max usually needs the rest and Samuel likes having a friend to cuddle with. This is a lot of the reason I have wanted to get another puppy actually. Samuel has spent so much time alone in the house, or stuck in his bed, or chair that I wanted him to have a special companion....besides me of course. God knows I am never out of earshot of Samuel. He learned his whole name this week so lately he walks around telling everyone he is Samuel Mark Backus.
We wish you all a Happy BLESSED New Year. I am so ready to close the door and throw away the key on this whole nightmare and get on with life. We are all looking forward to the hope that 2007 offers us, at least in our thoughts, prayers, dreams and goals. Praise God that through it all, we are still together and we lay our trust in Him for restoration and continued divine health. February 2007 will mark one year that Samuel has been totally free of chemotherapy. 2006 was at least significant for this decision. Thinking about it just makes me smile and feel joy knowing we saved him from THAT agony at least. It will mark one year Samuel has been free of spinal taps and bone marrow aspirates and poison schedules. Whatever these tests might show, I don't even care. I know everything I need to by simply looking into this child's face. I see the glow of life, tremendous strength and the spirit of God shining through. He is a miracle. Thank you Lord for your faithfulness to my prayer prayed so long ago about this. Thank you for always guiding our footsteps and leading us on even through condemnation. Thank you for the hope we have in You that no earthly person could ever give us. Thank you for Restoration. I was given that promise last year and I believe God will restore Samuel and everything that we have lost on this journey. No sacrifice will be in vain. I am looking forward to happy days. That hope keeps me going. Much love.
12/28/06
The bloody poop continues and I mean that literally. I have not rescheduled our appt for Tuesday in Portland and plan to keep it assuming they call tomorrow to give us good notice on arrival time. I just don't think we can do this whole thing in one day so we will probably stay the night before. I am assuming they will want us there around 7am again and last time Samuel had his EUA done there, we arrived at 7am and did not leave until noon. Trying to do a total six hour drive there and back in one day too is just TOO much IMO. Especially considering things are not quite wonderful with Samuel currently. That is a long time to sit with an oozing butt. We were originally thinking his butt was bleeding on the outside due to the rash he currently has, but now I am seriously thinking this is on the inside of the rectum as it only bleeds when he poops and I cannot see where the blood is coming from on the outside. He has rarely had rashes that were bloody but when they were, just sitting irritated them and it was easy to see where blood came from Highly annoying to put it mildly but at least they can get a look Tuesday and let us know for sure what is going on in there. Certainly something wrong on the inside would explain why we cannot get his gut to function right.
Bad luck seems to be following us around. Tomorrow we have to go get the spare tire fixed for the Backus Bus. We hit a pothole which was covered and hidden by water on the way to Mark's parents the other night and not only popped the back tire, but ruined the rim. It has a huge dent. So now we get to replace both and need to do it before our trip to Portland. This is not what I wanted to spend my Christmas cash on, believe me! Poor Mark had to fix the flat in the pouring rain with a crappy jack that dropped the van three times and a flashlight because it was dark. So far, that is the biggest thing but we just found our kitchen sink has been leaking where the water filter is and it was enough that it may ruin our kitchen floor from water damage. So we might be replacing it before moving as well. That would be awful!!!!!! We are still waiting to see if it bubbles up. And last but not least, a part on my juicer broke rendering it useless. I use it almost daily as it multi-tasks other things so I am in limbo waiting for a replacement part for it. Thankfully, that was only $10 so not a big deal compared to the other stuff. And while the dryer is supposedly fixed, it reeks like dead fish every time you use it and stinks up the whole house. This is a house that really needs no help in being stinky if you get my drift. This fish stench is worse than anything Samuel can do. I just have a feeling that the dryer repair man will be back real soon. Pray the bad luck stops here. Really, I have had enough.
We are blessed through it all. I love my little family inside these walls. We understand each other and I love the freedom that each child has to be themselves. My Dad was here for Christmas. Up from CA. Daniel told me that he was going to be sad when Grandpa Barry dies because he never sees him and has never been able to get to know him. Words like that will stay with me forever. These kids deserve their family to treasure them, spend time with them and know what is going on in their lives. Daniel senses that he is missing out on something by not knowing my Dad. Life is too short to not get that these family members have an opportunity to be somebody to my kids and they choose not to do so. My grandma Delma has shaped and influenced who I am today and the one thing I will take with me into grandparenthood is the knowledge of how important these family members are and what kind of memories they can leave behind. Everything influences. One day these kids will look back and know which grandparents did what. They will always wonder about the rest. Mark was cleaning out his Grandmother's sewing box today and told me that it was the best thing she left him. She did nothing with them as kids other than throw rocks at Mark. Kaysha noticed that in all her pictures, she never smiled. Thank God for Mark's parents who treasure my children and spend time with them regularly. Shame on the rest. Once again, their loss. It irritates me to have to explain to my kids why they are not important enough to other family members. I don't even lie or sugar coat it. They know the truth. Mark and I vow to always be there for our kids and for their kids. Period.
My Dad was here for a few hours on Christmas. He was here a few hours last summer. In that time, he got a small glimpse of our lives. He commented to me that it looked like things were finally getting back to normal for us. What the hell is normal? How does a person go about being normal after all this? I am now having nightmares about being stuck in hospitals and not being able to get released. Seriously. Does that seem normal to you? I also realized that I feel so exhausted and burned out on everything because I spend so much time taking care of Samuel, not to mention everyone else that I neglect myself and my own nutritional needs. There just isn't enough time in the day. We all make sacrifices and there are times when I feel like I am sacrificing myself. I guess it is good that "I" realize this so that I can do a better job taking care of me.
I guess my Dad can sleep better at night, thinking he came, he saw, and at that time Samuel looked and acted like a normal kid, no big deal. An hour after he left here Samuel was doubled over in pain screaming that his butt hurts and not to wipe the inside. Just like everyday. Dare I say, just like NORMAL. Yes, he has good moments because he has learned to live with pain. Someone stopping by would never suspect if they just so happened to miss those moments. It is always worse at night. I always know a day will be better if Samuel sleeps through the night. A lot of nights, he doesn't and comes down with poop everywhere. We change his bedding almost daily because of this. I just don't get how you can be a grandparent, know what your kids are going through, know what your grandkids have been through, and be oblivious. I guess not knowing or just plain ignoring the truth makes it easier to sleep at night. Whatever. I have given this all the time and space it needs I think. I hope to instill in my kids enough self esteem to not take this kind of crap personally and dwell on it. If people don't see the preciousness and gift that you are, walk away and find someone who does and treasure them right back. Delma always said all you need is ONE good friend. She was right and thankfully, I have Mark who is the best friend I have ever had and I am lucky enough to be married to him. I love the fact that we operate as a family unit so much differently than the way it was with my parents. These children are growing up and becoming my friends. They are my gifts. I will not be too foolish to realize that. I love Mark. Always. Love keeps us going even though at times it feels like everything around us is falling apart. Thank God! Praise God. We are in a good place even though because we have each other. I thank God for each day my family is whole. As for the rest, we will figure it out, we always do. I just hope and pray it doesn't take another year......
12/27/06
Christmas Recap.
The kids had a magical Christmas! Thank you to every family who sent gifts to them. Your choices were absolutely perfect. Things we would have purchased had we had the money to do so. All the clothing fir perfectly, thank you Julie and family! Such wonderful choices and lovely gifts to watch opened. Samuel received some things that were certainly sent by divine intervention. I am not sure who sent the bean bag moose, I think Lois? But maybe the Harings family? I tried to keep track, I swear! Samuel has been asking for a moose for about a month now. There was a moose we planned to pick up for him last Friday when we went to see the GI but they were all gone. So, we did not get him one because we weren't able to find one anywhere else. He was planning to get a moose. Planning! I told him he was going to get a few other things that might be better than a moose. But then he opened the moose and was just ecstatic! Mark showed me immediately that he got his moose. Thank you!!!!! That was perfect. He loved the quacking duck, thank you Gina and family. It has been named "Quacking Sara." He has a duck named Sara which looks similar, only it doesn't quack. So now Sara has a twin who talks. He just adores the ducks! Samuel loved his binoculars/3D viewer with all the dino pics. Just another thing he opened and I thought PERFECT. Julie, thank you! Samuel and Anna, as well as Kaysha and Daniel loved the play doh and Anna and Samuel have spent tons of time coloring like crazy! The Diego truck and animals were perfect and Anna and Samuel both play with that. Samuel loved the Dino shirt A LOT. He put that on first thing. Anna loved her horse and Kaysha got one too with a very cool book which kept her busy for several hours. I even got a refresher course in horsemanship, LOL! Kaysha also received several Bratz dolls.......can we all say PERFECT! Thank you! She is quite grown up, but still likes to play dolls. Daniel got some nerf toys which were totally appropriate as well as a magnet thingy to build which he loves and a car to build which he is begging to do with Mark. Anna and Samuel both loved their books too. Keila, Samuel's blanket arrived yesterday and we ALL love it and want one, LOL!!!!!!!! It is actually on his bed. Dragons are just as good as dinos. Thanks to our neighbors for the Santa bag on my doorstep Christmas morning. The kids loved seeing me find it and of course were overjoyed to see MORE. Um, yeah, we are still working on being grateful for what you have apparently. But anyway, Samuel got a bucketload of little dinos among other things and he was just beside himself. He is carrying around EVERYTHING he got in a laundry basket. Thank you all for your thoughtfulness SO MUCH. We are so grateful for the special gifts sent to the kids and still talking about how perfectly picked these items were.
Samuel is still having okay days and bad days. None I would call good. Every time I think I have his gut moving again and doing okay, it just stops. Turns on and off like the kids playing with the light switches. It is so frustrating to everyone. Tonight, I "think" it is on the better side, but that can change so fast that I hate to get my hopes up. Samuel is now a bit over 3 weeks post op and they figured 5 weeks would be the winner time for getting back to normal so I hope things magically improve then if not sooner. Even the ND's recommendations don't work at the moment so I just assume everything is still adapting and just out of whack period. And it would all be FINE if he did not have to poop EVER. He asked for something he should not eat yesterday and Kaysha told him, "Well, if you eat it, just remember you have to crap that out." Guess she has been hanging around me too much. Tonight he has a bloody butt again but the poop seems better consistency wise. He told me he wants his stoma and air bag back again tonight since the poop doesn't hurt his stoma. So frustrating.
I have more to write but it will have to wait for another day. Taking care of Samuel has been high maintenance as of late and I am just exhausted from everything it seems.
Thank you all SO MUCH. Much love.
12/23/06
Things are better.
There is some laughter and joy here. There is a new family member bringing everyone smiles and lots of laughter which is what we all needed. The kids are looking forward to Christmas and opening the gifts that have arrived in the mail. Thank you to Angel Sandi and dear Lois and family here in WA for your thoughtfulness. Mark and I appreciate your kindness so much. We did have the chance to pick up each child a present this week but our family has all agreed to get a puppy and do very little Christmas gift giving. So they already got their "big present" except he is still little.
We have wanted to add another dog to the family for quite some time now but the timing always seemed wrong with surgery and hospital crap always looming on the horizon. I wanted each child to have a friend who could be in the house, vs. Tucker (the black and white HUGE lump) who pretty much lives outside these days. He was supposed to be a house dog too but I draw the line at 100 pounds of love and joy. I don't care how cute he thinks he is. So, for now, everyone has a reason to get up, look forward to the day and a little break in the boredom and the often painful existence which seems to surround us sometimes.
Little Max reminds Mark and I of a boxer we owned BC (before children). He looks very similar in the face and already has personality plus. He is a clown and is fitting in with my gang of comics real nicely. Tucker is enjoying him too and we are happy to have a big good dog for the little puppy to learn from. Max thinks playing tug-o-war with Tucker's tail is a great thing to do. The kids are learning responsibility, commitment and investing. So, I am pretty happy about that. Raising a puppy is much easier with four people who can help with potty training and discouraging gnawing on inappropriate things. Six people to play with is also a bonus. Since he has arrived, he has traveled everywhere we have went and it is a nice change for everyone.
Samuel's gut improved everyday from my last update. Thank God for that. I have put a lot of time and effort into researching, cooking, brewing teas and concocting new food combinations to help Samuel's gut function normally and it has paid off. We have had to be absolutely strict in what he has been allowed to put into his mouth and now each day, he is able to eat a little more of the foods he enjoys than the last. The GI looked at his anus yesterday and said, "Wow, that looks................normal." It does and amazingly, it was all healed up when we saw her. I went over with her the plan from the surgeons for post op care including the fact that we are supposedly dilating it daily for six months. I told her that I was afraid that this will just be the thing that keeps his gut from becoming normal since any little thing seems to shock his intestines and cause them to stop working. I am willing to try this, but we need to be prepared to ditch this plan and form a new one if this dilating daily proves to make things worse for Samuel. She was kind enough to mention the psychological aspect of it as well. I think we have really found the needle in the haystack with her as far as being an MD. She told me that if we need this looked at and cared for monthly under sedation, they can do it in her office. So that is wonderful news if we should need a back up plan. I told her about the EUA on Jan 2nd and that I was hoping they will be just done with us at that point and release us back to our PCP, or her, or whatever. Not looking forward to that drive at all. She was pleased with Samuel's overall condition and said to expect the next six months to still be an adaptation period assuming that the anus remains the same size. This really means that things could still be crazy with his gut being so fragile and never having more than a few weeks of normalcy. I told her I was concerned about ibuprofen causing his gut to stop since it seemed to be the only thing we have done in the last week that was not normal and she agreed that it could very well cause the issues we had. And I ended up giving him some last night and it seems to have caused gut issues again today. Every day is so different, it is difficult to know what to expect with Samuel at this point. Feels like we are chasing our tail here. It is difficult for him to understand not being able to eat certain foods again. We see the GI again next month. I cannot tell you how refreshing it is to go into her office and be treated like a human and have someone actually think about Samuel's feelings and how all this affects him as a person, not a chart.
With Christmas upon us, I am trying to make the best of it. We are not doing anything special. I am not planning an extravagant dinner or a big hoopla on Christmas day because I have enough to do already with taking care of Samuel's many nutritional/herbal needs. Quite honestly, I will be glad when Christmas is over. I will be glad to take the tree down and remove every reminder of holidays from my sight. I feel cheated, burnt out, exhausted, and down right disappointed with the way this year has gone and will be glad to see it end. Not that the calendar changing to 2007 will make a difference in Samuel's gut, and his healing, but at least mentally I can note that this year is now behind us and hopefully look forward to the hopes we all have for 2007. Sometimes it feels like this will never end and with the small amount of help and understanding we have found in medical people this year, I just don't know how I am going to take too many more days of it on. We just all pray this ends soon and that Samuel's body is restored into God's perfection. That is our hope. That is my prayer. Until then, I will do whatever I can to make it better as best I can daily.
We wish you all a Merry Christmas and wonderful Holiday. Treasure normal. Treasure health. Treasure understanding. Treasure support. Treasure friends and family who care. Treasure Jesus who still brings hope where there is no hope.
We treasure you all. May God bless each of you. Much love.
12/19/06
Well, we can add yesterday to the growing list of horrible days in 2006. Add today too. All I could do after we arrived home last night was walk around the house and cuss. The drive was long, which we expected, but worsened by Samuel's butt problems. When we arrived at the hospital, we were taken back quickly but noticed immediately that he had had a poop accident. He called it a "bubble" but I can tell you that it wasn't as it left two giant streaks of wet down both pant legs. I brought him extra undies/diapers but NOT pants. Pretty much his butt is just oozing acid water at this point. Within ten minutes of being there, he went through four changes due to the oozing. The Residents saw us first, apparently Dr. S. has gotten used to sitting back and letting them run between us and him. Yes, I found that irritating too since we went to see him and he never looked at Samuel's butt at all. I finally asked where Dr.S. was, if he was hiding or what. I don't want a Resident's opinion at this point. The Residents did look at Samuel's butt but did not think he has a hemorrhoid but that it was just irritated. And I am just thinking that they obviously haven't seen enough to know. They sent us to x-ray to see if Samuel was constipated but instead he was pretty empty of poop but full of air. So, in their opinion, nothing was wrong yet they stood there while acid poop oozed out into their faces and Samuel screamed and insisted that his gut is fine. I told them I did not care what the x-ray shows, it is NOT fine. We HAD fine previous to this surgery. This is NOT fine. So when the surgeon finally appeared, he decided to give Samuel a bile binding medicine which might actually be useful for the here and now. Jury is still out. It is amazing how you can go somewhere else and still get NO help. I am of the firm opinion that if we want to help Samuel, we will have to do it ourselves. Differing opinions is always good, but in the end, Samuel just needs relief NOW. The surgeon felt like we could still have several weeks of this. And, we have to go back two weeks from now for another EUA because no one can look at his butt while he is awake obviously. They figure it should be healed at the five week mark post op. Ugh!!!!!!!!! If we are going to have to drive this every two weeks, we need to move closer. I may call and push this back a week. Right now they have it planned for January 2nd and I am sure it will be an early arrival time which may mean we just need to go the night before and stay over. The travel costs are adding up as well as the recovery time from all of this. Who am I kidding? There is NO recovery time. This is NOT how I wanted to spend this holiday season.
Okay, so what I have decided we are dealing with, since constipation is ruled out, is his gut just decided to shut down. Food goes in, food comes out, same as it went in. Doesn't matter what it was. And then add acidy bile and all you end up with is a burning runny mess. Daniel had to get me up last night to help Samuel who could not even get out of his bed because he hurt so bad. This has NEVER happened. Usually Samuel can come to wake me if he needs to. So, I called the GI here to see if we could get in. She is the only one who seems to be able to see Samuel's issues through x-ray. I imagine then that his x-ray taken yesterday shows dilated loops which are full of trapped air and poop just like they did previously when his pooping was this painful. At first there was nothing available, but then a cancellation came up Friday so I took that. The GI has never seen Samuel acute before so I hope she can offer some help or at least SEE the problem and if nothing else, offer moral support. This office was kind enough to not want him going through Christmas without seeing the GI. I hope this is resolved before then obviously.
So, as of now, I am just trying to treat his gut with diet and herbs to help heal and minimize swelling. At this point, it would be so nice if something would just shorten the duration of this. We know it can go on for weeks, if not months. We have no idea of what caused it other than just post op surgical stuff but his gut is definitely in shock and shut down. This situation is equally as bad as it was when we went to the ER in Seattle back in July and had the horrible experience with them doing nothing to help. We are treating him differently now since we have at least had the GI look at the scans and offer a diagnosis and I pray that we see results asap. When Samuel feels bad, so do I. I can think of nothing else but ways to help him feel better. Amazingly, his anus looks pretty decent, but he has diaper rash on the more outer parts of his skin. So the new mucus membrane is holding up well.
Special thanks to the Klein Family and the Merrill Family. Your gift boxes arrived today! That made me feel a lot better about the Holiday. Thank You!!!!!! The kids are excited to see what is in them, but don't worry, they are hidden well.
We thank you all for your love and support and checking in. I hope to someday only update with good happy news. I had a long conversation with God about that last night. I did not hear much back however. Much love.
12/17/06
I would love to say that we all lived happily ever after. But then, that is not the nature of the beast is it. Over the last few days, Samuel's butt has gotten progressively more sore and his poop has become "fire poop" again. The culmination was today. It became a bloody mess and I mean literally. My mom thinks he has a hemorrhoid which burst. It was pretty bad and looked like a very swollen anus with a skin tag but now has settled down a bit but is still VERY sore. She thinks if he has them on the outside, then they are on the inside too. (Mom has 40 years medical experience and incidentally apparently TONS of experience with this particular condition. Um, not personally but with a former surgeon and his patients.) Samuel has actually complained that his butt has gotten smaller again and that he cannot get the poop out. So that would explain him saying this and then telling me that there was something in his butt I needed to get out. So, we are back to the shrieking screaming when pooping fits which I HATE HATE HATE. I thought we were going to be done with this and yet it persists. I called OHSU today to touch base with them with this latest issue and they think it is likely a food caused problem more than a problem which will need a fix tomorrow when we go back. I guess if you were going to have a problem, best to have it arise the day before your post op. No one told me about hemorrhoids and they were reluctant to say it was anything without seeing it first.....of course. Poor Samuel, now he has to sit on this for three hours there and back. And topping that off, I think that his daily doses of ibuprofen are starting to constipate him and possibly added to the situation as well. It is always a catch 22 around here. I hope our appointment with Dr. S. goes well tomorrow and he will have some ideas for Samuel to start feeling better soon. I hope Dr. S. doesn't hate us and vice versa when tomorrow comes to an end. I just don't know what to expect from these people anymore.
And if that weren't enough, the severe wind storm we had Thursday night knocked power out to over a million people here. Us included. So all of Samuel's baths and TLC since you cannot currently wipe his butt has been with water boiled on the camp stove and added to the cold water in the tub. Trying to look at this mess with flashlights and keep it clean in the dark was ridiculous. Entire cities were without power for days. Mark's parents and we were lucky enough to get restored on the second day and that is truly miraculous if you know where we live. My mom is still without power. I was thanking God for warm bath water more than anything else. It is difficult enough to care for Samuel as it is when his butt is raw and irritated but take away his warm soothing baths and let's call it miserable! The kids had a bit of fun sleeping in the room with the woodstove though. Samuel slept with us and was my "electric blanket."
Cities are still without power currently and many people have been told it could still be days until they get all the trees off of lines and restore power to them. Just not a wonderful time to live in this state at all. I believe the way we will travel tomorrow will be fine but certainly it will be a long day for us. Two days ago I thought it would be a quick hi bye kind of visit. Now I am not sure what they will want to do. I was hoping we would be done there after tomorrow and handed back to our PCP but with this new issue, I don't know.
I cannot believe Christmas is a week away and still we have done nothing but the tree. We put the tree up, we took pictures, we tried to look happy. I feel cheated. Cheated for the kids who just want to have Christmas and the joy it brings to you when you are a child. I feel cheated for me because I thought this was going to turn out better than it has. I feel cheated for Samuel who just wants his butt to STOP hurting!!!! All I want for Christmas is for his butt to STOP hurting, bleeding, breaking out. I want the screaming to end unless I am the one who gets to do it because there are certainly some people who need to be screamed at. We were hoping to do some shopping Friday and leave all the kids with Mark's parents but the weather killed those plans. It has just been a sad state of events here as of late. Weather, surgery, disappointments right and left, yes the entire year and don't forget the ones before it. I would seriously hide the calendars around here if I thought I could get away with putting a hold on the holiday until we were ready. Jesus, I know you haven't forgotten us. We haven't forgotten you. Thank you to Samuel's Christmas Angels, the Harings family for the package of gifts. There will be something under the tree for the kids. We appreciate it so much. Much love.
12/13/06
Here I sit, listening to the sound of the GE man FIXING my dryer. At least he better be. It has been almost a month now that we have not had a reliable dryer. This whole fix ended up costing just under $500 so my Xmas gift this year is certainly having spent the money on the extended warranty. We could not have paid for this. Basically, they rebuilt the dryer. After almost a month of it only working when it felt like it, I am still waiting for it to quit. Funny how you get used to things even when they are wrong.
Samuel is doing well. Each day he needs less pain medicine and has a little more energy. He is back to his old self for the most part. Pain does still continue to be an issue. Over the weekend, his poop actually turned to poop. Prior to that, it was partially undigested "fire poop." So, it was a relief to know his body healed enough from the assault of surgery and antibiotics to start functioning properly again. Samuel still has the same continence as he had previously so is back in undies. His anus looks great. You can actually see one now. Before surgery, you just had to pry the butt cheeks open and all you saw as a small opening and horrible looking skin. Now, he has all the correct little crinkles and the skin is darkening up and toughening up as it should. After my brief conversation with the ND, I figure we probably have another year now of just adaptation. Samuel's body was always changing so his gut just did not know how to compensate, and mainly overcompensated when the anus was small. I am so happy about this situation being done. We are all confident that his body will adapt well and that God will restore what has been taken from him. As far as things are for now, it seems similar to times after a dilation. The poop still hurts him but each day is getting a little better than the last. Our ND feels if he can poop no more than three times a day, we would have it made as the acids which irritate would be better absorbed. So, I am feeling very patient about this situation currently knowing that at least today, Samuel remains just as continent as we was before surgery and we have only healing in front of us so things for him can only get better. Kaysha actually noticed he doesn't scream when he poops lately. He actually hasn't since we got the ND involved but I guess it just now finally dawned on her.
It has been wonderful to be home, and released early from the hospital. Mainly because I can feed Samuel his normal food which help to heal him faster. And, he can eat whatever he wants. He is really liking that idea. My mom was here over the weekend and could not tell any difference in him from the week before surgery to now, a week after. He is doing well. And if you know me, as he improves, I improve. So I feel a little better daily. Thank God for time and sleep.
We managed to get the tree up yesterday. It proved to be as troublesome as the year has been. It is one of those prelit ones, except it did not want to light up. After spending an hour fiddling with it, we gave up. The bottom is lit, the top is lit and we filled in the missing with a strand of lights. The kids are feeling happier now that the tree is up and Daniel was so wishing it was Christmas Eve. He can be glad it wasn't because if it was, they would have gotten nothing, and by that I mean nada. I wish it was ho, ho, ho, but in reality it is ho, hum. I am really trying to be joyful for their sake, but there is so much working against us right now...mainly because of Christmas, which is the saddest part of all. We knew it would be this way, but that does not make it any easier.
Thanks to those who sent lovely notes after the last update. Many brought more tears. One, however, was a word from God. I want to share part of it. It came from Marla, who has had her own serious illness to deal with, and chose alternative and holistic medicine instead of a conventional bone marrow transplant or lifelong blood products. We met online and she is a wonderful friend to us.
As I was pondering the events of December 4th, I wondered why Levitt did this surgery at all given that he obviously had his own judgemental opinions toward us. Then I got this.
Levitt did a good surgery on Samuel, so that should always be kept in mind. But even then, it is only God who allows Levitt to do any surgery in the first place. God uses all for His purposes even if Levitt's heart was not right.
That was really the answer I was needing to hear. It is awesome to think that God brought the best person to us even if he had his own agenda. Moreover, it was God who knitted the whole thing together: OHSU, Levitt, us. So in that respect, this awesome thing, is still an awesome thing and it does help my heart. I thank God for my friends who know Him and remind me of His presence in everything great and small.
Bittersweet. Levitt spent two hours fixing Samuel's butt. Something that could have been fixed two years ago had we had a surgeon with the knowledge or common sense to seek out an opinion. We trusted them. They let us down, big time. Levitt fixed Samuel and the fix is obvious. His butt must have looked so awful to Levitt. Now, it looks "right." Healey was right. It was obliterated. The difference is huge. This is such an awesome thing to have restored. I pray that Levitt is blessed for his compassion for Samuel. I am amazed that someone could witness such obliteration and still try to force chemotherapy on us knowing full well how this damage was done. Insanity........doing the same thing over and over expecting a different response. They do not believe in anything other than chemotherapy and certain relapse if you do not jump through their hoops. As the ND says, if you only have a fist full of hammers, everything starts looking like a nail. Sorry, Samuel is a boy. He deserves someone with a tool chest that holds more than hammers. One more year, one more month, one more week, one more day or one more minute of torture is TOO much. I am so tired of him hurting. Yet that is all he knows.
Bittersweet. Levitt spent ten minutes with me and in that time obliterated my heart. Keila wrote, "I can only wonder how troubled he must be to have been so disconnected from the moments that he spent in your and Samuel’s lives." Didn't he know that we had been waiting months, perhaps even years for this moment? Didn't he understand how much this surgery meant to us? Now, I know that hearts mend. I do. I have had worse things happen in my life and recovered. I think I feel especially emotional knowing that this is finally over. I can finally let this crap out. No more fighting with medicaid, doctors, etc...at least about this issue. Like a soap opera with a storyline gone on WAY too long, everyone just wants it to be over, and they want a happy ending. And when the ending comes, in true soap opera fashion, it is twisted in a sick way you did not expect. That is what we got. So, I am picking up the pieces and chalking this up to a battle wound for Samuel. It has been long, and it has been a hard fight, and I would do it all again if it meant that this would end with the best person fixing him properly. My heart is wounded. Samuel's butt is fixed. It is a small price to pay when you think of it like that. God continues to take care of us even if very few MD's care who we are or what we have been through.
I am afraid that the worst thing I will carry away from all this is the feeling that no MD can ever be trusted. Assume they are all back stabbers and proceed with caution. It is a horrible way to continue on with this life, but unfortunately, that is where I am now. If I had had this attitude six months ago, I would have spared myself the emotional baggage I currently carry. I pray to someday be rid of this baggage and have no need for MD's at all.
As Christmas draws near, I find myself drawing nearer to Jesus and trusting him not only for Samuel's restoration, but for all of ours. It is because of Jesus that Samuel lives and we will continue to follow His path and do as He directs. We are not without hope. We are not without a plan or a leader. I trust God. I don't trust man. Samuel is our miracle, he is our child and I think we have proven we take care of him best. One cannot argue with our success. All that glory goes to God. Samuel will continue to be restored in God's perfect timing. As will we all.
Much love to you, my friends.
