11/8/05
Thanks so much to everyone who wrote and prayed. Samuel was finally nudged off to sleep with the help of ativan at 1am. He slept til about 8am and woke up still feeling badly but no more puking. Would you believe that I got sick today? I don't have time to be sick! Something like a 24 hour flu but it made me wonder if he did not have the same since our symptoms were similar. How miserable! Taking care of him in that condition is bad enough when you feel well, but just horribly magnified when you feel awful too. Mark was going to go to work today for the first time in two weeks but had to cancel. I called the GI clinic in Tacoma to see if we could get Samuel in to rule out intestinal blockages and they suggested we see our primary care or go to an ER. UGH! I cannot even believe it. Here we go to them so we have a closer place to go in an emergent situation and they send us back to Seattle. I would feel utterly disgusted if I did not already feel so rotten. Samuel did not continue to puke today and ended up tolerating clears well and peeing well so we stayed home and he and I went back to bed. I don't think I could have made it to Seattle. I took a two hour nap and Samuel took a four hour nap and we both woke up better off. I hope to feel like myself again tomorrow since today has been a colossal waste. Samuel is playing and fairly happy tonight right up until he poops. His butt needs about a 24-48 hour break from pooping to recover. It is so bad that he doesn't want to sit down and walks in a squatting fashion so his butt cheeks don't rub together. He cried for ten minutes after a diaper change today. I still say it is unbelievable until you see it IRL. You just cannot even imagine. It is still diarrhea and it has been everywhere. The diapers don't even keep it in. I told Mark it would be a waste of time to move to a new house when all we will do is ruin it with poop everywhere. In the time I have felt decent today, I have been washing sheets and blankets. Diapers are next and I should start them tonight now that I think of it.
We haven't heard from our Onc regarding the port so I guess I will need to get on their case tomorrow when I feel better. I really hope tomorrow is a better day.
11/7/05
Just a quick note to request your prayers. Looks like it may be a long night. Things seem to have gone to hell in a handbasket here. Over the last few days it has become obvious that Samuel's gut has some sort of blockage. Well, tonight, after all normal day clinics closed, he started puking. He has had diarrhea all day and his butt is so red and sore it is unbelievable...again! I thought he improved and was okay tonight, but just before he went to bed at 10pm tonight he was puking again. Yesterday his breath smelled like garbage and I was hoping that did not mean the worst and today it obviously does. I sat in his room tonight trying to figure out which hospital we will go to if the need arises. And of course, our port is shot so that just adds insult to injury at this point because the first thing anyone will want to see after an x-ray is labs. Samuel will be fasting tonight in the hopes of resting things and relieving whatever is causing this. If it is not improved tomorrow, we will be heading into the hospital because by then he will need IV fluids since nothing seems to be staying down. And his poor butt is so sore that my morphine will also run out. Ugh. I cannot even believe it and we have no clue what caused it.
Oh, and Happy Birthday to my loving dh. Sorry your day has sucked.
11/4/05
The port is shot. It will have to come out and a new one placed. Yes, that means another surgery. No details as to when, after spending over three hours at the hospital stuck in a little room, we left. The kids did really well and we got to visit with RN Julie for over an hour and walked down to see Esther as well. I felt privileged to be allowed into the RN lounge to visit, LOL! (Hi Esther!) I assume that by now our Onc has contacted our surgeon regarding the scheduling of surgery so we should know more soon. The talk about the sheath, the removal of the line possibly not including it, inserting a guide wire into the vein so it can be reused, etc is making my eyes roll up into my head. We are not sure our Onc knows exactly what he is talking about regarding the removal so I will be interested to hear what the surgeon has to say. And of course, I will be reminding him of the very same thing I did with the ileostomy take down, if he doesn't think it will work, we DO NOT do it. I am sure it will be an interesting conversation.
11/3/05
Trying to Help You
A Poem for Samuel from your Mom
The day that they told me,
that you had this disease,
I fell to my knees,
trying to help you.
My world came crashing down,
there seemed no solid ground,
and everyone around,
was trying to help you.
Your life seemed to drain away,
and I begged you to stay,
by your side each night I'd lay
trying to help you.
Trying to help you,
I've screamed in vain, I 've prayed all night, I 've slammed a thousand doors.
Trying to help you,
I've walked miles across hospital floors.
Trying to help you,
I have hit my knees and asked God how much more.
I've stayed awake all night,
felt you might lose this fight,
there seemed no end in sight,
trying to help you.
Strangers have taken you away,
I silently screamed for you to stay,
I let you go anyway,
trying to help you.
Trying to help you,
I've felt so much joy and shed so many tears.
Trying to help you,
I have felt triumphant yet had to stare down all my fears.
Trying to help you,
I have given you to Jesus and held you near.
I've made the sacrifice,
Walked away from bad advice,
Tried hard to do what's right
trying to help you.
You are a part of me,
For all the world to see,
I guess I'll always be
trying to help you.
Tomorrow we spend another day in Seattle trying to get Samuel's port to work. I guess I will just pray for the best outcome, whatever that is. It is really unclear at this point. It is going to be a long day but we will be able to visit with RN Julie so that will make it nicer.
Samuel is still doing great. He is pooping a lot, but his butt remains clear and most importantly, NOT hurting. Huge difference from just a week ago. Thank you God!
Want to send out a huge thanks to Heidi H for the gigantic box of clothes for the kids. All I can say is wow. It means a lot when people think of my children and send them things that I just cannot afford right now. Much love to you.
11/1/05
If you want something done right, you just have to do it yourself. That has been my slogan for the past week. Last week, in a word, sucked. We visited the GI clinic on Wed as planned but it was really made clear to me that we are in this alone. No one has any solutions it seems. I felt like our trip in for follow up was a waste of time. Everyone wants to help but no one seems to know quite how to do it. The only solutions offered to us were more medications I left at the pharmacy. I came home feeling defeated in many ways. We did not meet with the Onc from our former hospital. They did not have any time on Wed and we were supposed to make an appt but never stopped to do so. Our Onc left us hanging all last week so I finally e-mailed him yesterday to see if he forgot us. Honestly, I wish we had the option of being forgotten and in many many ways, it does feel like we are the forgotten ones. There is no support group for people like us. The lay person cannot understand what we have been through, and the normal families undergoing some sort of cancer chemo cannot grasp it either. The funny thing is, I don't get them either.
So it was a really eye-opening week in a lot of ways. We got home Wed and I called Kristina to ask her if she too got the impression that NO ONE can help us. She felt the same way. Being the type of person to NEVER give up, I hot the books again to try to figure out where we go from here. Where we go regarding Samuel's sore butt, the pooping, the pain, etc. The port is something I have no control over at this point.
Everything has changed this week. Samuel's butt is perfectly healed. It looks normal. NORMAL! It is amazing. Over the last few days it has cleared up nicely. The poop hasn't changed, stopped hardened or softened, but it is no longer burning it's way out. Breakthrough, finally. I just added some things to his g-tube diet and all of a sudden, we have a change that you just cannot argue with. The best thing in all of it is that he is not dependent on any meds for this relief. I am very very happy about it. I only wish I knew which thing I added did it. Obviously we won't be changing anything for now. I have also found a secret way to help him to be able to eat some foods. He eats, and then I just give him tons of stock after treating it like a blockage before it becomes one. This has worked really week too though keeps him attached to his pump a bit more. But he wants to eat and we want him to eat too. It is just not normal to not eat food of some sort. But things like cheese, bacon, sausage and a few others are off the list forever most likely. Or at least until he learns how to chew them really well. His rectal pouch seems to be working well too because all of a sudden he is taking huge dumps that overflow the diapers. If only he would just go in the toilet. We talk about it, every time, but he just doesn't get it yet. We have been out and about a bit in the last week and his body seems to shut off the pooping while we are gone and then makes up for it the minute we get home. This is convenient since the minute he poops, he wants to be changed NOW. Who wouldn't? I was waiting for him to poop while trick or treating last night but he did not. I hope this wonderful improvement is not a fluke. I pray we have found the solution.
Everyone is sleeping better here. Samuel has decided he likes our bed better than his own so we have company nightly. And he is a sweet little cuddle man who only cuddles with me and holds my hair all night. I have at least one moment a day where I reflect on how lucky we are to have him here with us. How each day he lives is a gift. And then I think of all the people who fully expect him to die. I guess that thought keeps everything in perspective. I wonder what he will be like at Daniel's age, at Kaysha's age, and as an adult. I am sure that as an old lady,I will be very well taken care of by Samuel.
Well, the news from the Onc was that they can do the TPA infusion over the span of a very long day in the clinic. "Plan to be here all day." Oh, yea! I cannot wait to waste another day there. Or our surgeon says he will just take this port out and put a new one in the same place but deeper in this time. I guess we are going to try the TPA first but I am just going to be pissed if it doesn't work, or worse, buys us one month just to have it fail the next. We need the port for a few years yet and it is a very handy thing to have regardless of whether you do chemo, meds, labs, whatever. He has accepted the port as part of his body and he does not mind it. I was hoping to get in on Friday to do the TPA but the clinic has never called me back so who knows. I wish there was someone to take A.D. for long days like that because there is nothing for her to do but whine and make the whole miserable thing more miserable. Kaysha and Daniel can at least go to Mark's parents. And I am not too impressed with the TPA thing either because no one has really assured me that it will work and if no one thinks it will, I would just as soon not waste our time.
Samuel had a fun Halloween as did all the kids. He decided he did not want to wear his costume though. We did the usual... hit the streets of the city we used to live in. All the kids did really well and had good manners. But the rain has hit us here and the kids are not able to go outside in the daytime to play and are driving us nuts with their energy that is not being spent. The time change always screws things up here too.
I have already started thinking about Christmas. Last year today we started chemo after a six month break and basically got on another out of control rollercoaster until about February. There was no time to decorate, think, or do anything fun. So I think we might start early and do things right. All the kids are old enough to help. The year I was prego with Samuel I made ornaments for the tree. and they remain my favorite to date. Everyone who sees them comment on them. I think I will do them again this year with Kaysha who has an artistic talent of her own. And it will give her something to do while the babies nap. We found a project for Daniel to do for the winter with Mark as well.
I just want to feel normal, a little. Every once in a while, I do.
Thanks to those who wrote this week and checked in. Much love.
10/22/05
The port did not draw. There is a sheath over the end of the line that resembles a tube sock. It will let fluid out similar to going back up your leg if you think of a sock where the fluid should be coming out the toe. So it kind of works. But when you draw back on it, it then becomes a suction cup and closes over the end of the line. I was led to believe that the TPA drip would be done on the same day but now it is most likely an inpatient thing or possibly a very long clinic day if the pharmacy will allow them to do it in the clinic. Seems that they have never done this before. Or if they do, it is very rarely. And no one is sure that will even work at this point. We even tried TPA again overnight. Only this time, we told our Onc that we would draw back on it at home and if it did not draw, deaccess and let him know. This kept us from making another wasted trip in. I hoped that the Daddy touch would help, but it did not. Our Onc called to see about things at noon and then told me that no one even knows how much TPA they can give Samuel. It is starting to sound like a bad idea. And even if it works, it may not buy us much time since we know we have a problem that will just close up again. We have known that the line had issues since June of 04 but no one has been able to see it this closely. I ended the call with the Onc by telling him to contact our Surgeon and ask him his opinion. He felt that the surgeon would think it just needs to be removed and replaced. Period. And that is starting to sound like the best option especially if the sheath is so stuck on the line. No one will want to put the port back there again and that leaves another problem. According to the Onc, putting it anywhere else is a huge pain but I wonder how much harder it would be than the VA shunt was the second time around. What a pain! All this means is more surgery for Samuel, and not good ones either. I guess our Onc is planning to call me again Monday with the plan. Whatever that might be.
And of course, it was a long drawn out day yesterday. We left at 10:30am and did not get home until after 6pm with 3 hours of that being the drive home in which A.D. screamed the entire time. And the other hospital is about 30 minutes away, even in traffic. It is just crappy. So I see another week full of appt's for us. Wed being in Tacoma. I don't know what else for the port but I am sure that our Onc will think it needs to be done ASAP. I don't want to go spend another day and night there on a procedure that may not work at this point. I don't want to send Samuel off to some surgery that no one wants to do either. It just seems the perfect end to another craptacular week. I still ask, do we ever get a break? Ever?
The Onc left the room telling Samuel that he sure makes him work hard. I reminded him that that is why he gets the big bucks.
On a better note, Samuel's butt seems to be behaving. I really think that the puke did him good and if we never allow him to eat food again, all will be just fine and dandy. Hear the sarcasm there? Yesterday, he only pooped once while we were away. But then we got home and he pooped five times in a two hour time span. The last two nights, he has not pooped during the night. He pees a lot more which means he poops a lot less. His poop resembles what you would expect from A.D. so it is not terrible consistency wise either. I briefly spoke with the Onc about pain management for Samuel but he was pretty much useless there. The Pain Service is unavailable for outpatient clinic patients apparently. He suggested benedryl and ibuprofen, yeah! I think I can figure that out on my own. Thankfully, the last few nights have been better. He has been sleeping in our bed with us again lately too. It is starting to be like old times. He will go to bed in his bed and then sometime in the middle of the night, stumble in and sleep with us. He has finally figured out that he is not hooked up to a pump at night now so he is free to get up and not have to wait on me.
We spent some time discussing whether to move back to the other hospital and the biggest thing is that we have mostly now got these people trained, LOL! If I call and say that Samuel is blocked, they will say "get in here." They won't ask why I think so and a bunch of other crap. There are so many pros and cons. That drive being a big one. And now trying to sort out who is responsible for the catastrophe after catastrophe that happened there is in our thoughts. The respect factor is a big one. Will they respect our knowledge, our hard work getting our son better, and that when we say there is a problem, there is one. I don't know. I guess I will have a better idea of that upon meeting. We tried to see if we could do all of this on Wed but I haven't heard back yet. I get the impression from Mary that she has this type of respect, but of course, you never know with Oncs. I guess it would all be fine if I knew that we would never ever have problems again. We could just finish out whatever part of the protocol we are inclined to do, no emergencies, not hospital intervention needed. Samuel will never be sick, that type of thing. And in the sick respect, we have been very lucky compared to others whose kids are sick all the time because they have been on chemo so much. Either the food is really good, we are still pretty isolated, or his immune system is just not been compromised. And as Mark says, Seattle would be okay if it was just once a month and they did a good job of scheduling. But OTOH, it is pretty impersonal there which would be fine for the run of the mill person. It was always personal at our other hospital. Always. I like personal when it is our kid I am talking about. If these people in Seattle had the time to get to know us more, we probably would not have had so many gut issue run around's in the beginning. I was reminded yesterday of the stupid Onc Resident from January who told me that they look at the patient as a whole person yesterday when asking the Onc about pain meds for Samuel. They don't look at the patient as a whole person because he has no clue about the gut. Doesn't want to get a clue either. And it probably doesn't help that our GI is now 60 miles south either. At any rate, this would be one of those times where you ask for help and don't get it. The one thing I know we have learned through all this is that we do not rely on the doctors to fix things in the day to day. We don't trust them much either. I rely on God and myself and Mark. I guess I just need to pray for guidance on where we go from here. And I will keep having these pros and cons conversations with myself.
This day is a total waste. I keep trying to figure out why I feel so worthless. Oh, yeah, we spent the day in traffic mainly and in Seattle for a few hours. And a new week awaits.....
10/20/05
Kaysha had a nice birthday and received some very nice clothes. She got to pick some things out and we took inventory of what is missing from her winter wardrobe so that we we able to help her make good choices. She made her own cake this morning and had a very relaxed fun day. It is hard to believe she is nine. When we moved into this house the first birthday she celebrated here was her 4th. She is such a big help to me and the more we get into homeschooling, the more I am glad I made this choice. They do learn so much more here and the babies just would not know what to do without the big kids. I do hope that by next year, we will be having a nice party in our new home, where ever that might be.
Samuel and A.D. had fun visiting with cousin Shaye. Everyone likes Shaye. It was a fun night for all.
Tomorrow, we head to Seattle to work on the port. If you pray anything specifically, please pray that it just works fine and we don't have to be there all day. Pray around 12ish PST because that is when they will try it again. As it happens, we don't have to be there until 12:30pm which means if it ends up needing a line study and a 2-3 hour infusion of TPA, it could be a late night coming back in Friday night traffic. I am sure our Onc is just dying to see his labs now after two plus months of not.
Samuel has had a few decent days. Seems the puke did a good thing. The nights have been better. His GI doc called yesterday to check on him which I thought was nice. We follow up with her next Wednesday. Mary called me to let me know that she spoke with the Onc there and he was willing to meet us and take on our case so we will schedule a meeting with him hopefully on the same day as the GI appt. Then go from there. My biggest concern right now in switching is that I don't know if they will be able to understand what we have been through in the last 14 months since we left there. We are different people now. We don't blindly trust, we do ask questions and we do refuse things that we don't feel are necessary. By the same token, will they understand and believe us when we say we have gut issues. It took awhile at Children's to get this respect from the docs caring for us. So I guess we wil see. I get the impression from speaking with Mary that we are still pretty big news there and there is a lot of respect for what we have endured, understanding that we have had it, etc. In her mind, it is pretty fresh. In mine too. Mary told me that our GI doc caught her in the hall today and asked her if she remembered Samuel and then went on to tell her how well he was doing, etc. Mary was and is pretty excited to think that we may come back. We really need to think it over. As Mark says, we like our Onc a lot. I think it will be hard to find someone who will top him, even if he irritates me here an there. He is a good guy, as Monika says. Just worries too much IMO. But the drive, the scheduling, and Samuel's poop and food problems, and needs are a major issue now.
Thanks to L for mentioning the pain meds and scheduling of them. I had never thought ot that. But I do plan to get a consult with the Pain Service tomorrow to see if we cannot get a plan that doesn't leave Samuel hurting so much at night. The Pain Team is another area of Children's which we have a good established relationship. There is no Pain Service at our former hospital. So all of these things need to be worked out ahead of time. Kristina feels that if we go in under the umbrella of Palative Care, then we should have no problem getting pain meds or narcotics as needed.
Today is the 18 month anniversary of Samuel's diagnosis. Today is our 9.5 year wedding anniversary. Today is Kaysha's birthday. What was God thinking? Did He think I might forget the dates if they weren't all the same?
Karry, thank you for the card for Kaysha.
Heidi H. You amaze me with your generosity and care for us. Thank you, more than you will ever know.
Thanks to Barbara at ET for you know what. Thanks for your ear, your no BS attitude which works so well with mine and wanting to help us.
And to those who continue to write me personally and be there, thank you. It has been a rough time here. Thanks to those who pray silently on our behalf. Much love!
10/18/05
Another sleepless night. Full doses of morphine and ativan were necessary to get Samuel to me. I think he gets in bed and his anus starts hurting and he has nothing else to thing about but it. And if it oozes anything, he is frantic. He will literally scoot his butt side to side in an effort to stop the pain. Cleaning and putting the cream on helps a little, until it oozes again. In the daytime, it just doesn't seem to be as big an issue. It just sucks to have to deal with it all night, every night. We are to the point where we just need to drug him in order to sleep, period. Without the narcotics, there would be no rest at all. And we are almost out. We go to Seattle Friday....supposedly.
Today was the first day of a food blockage since the take down. Samuel's naps and rest are always interrupted by pooping and today was no exception. But when he woke, he was telling me his tummy hurt and he was acting sick. I felt him to check for fever, and there was none. Then I got him up to see if that helped at all. It didn't. Then he started coughing the "cough of doom." Meaning a puke was coming. I put him into the tub but it did not help. About 30 minutes later, he puked up a huge pile of undigested food. Now, he feels great. Well, except when he poops. It is just annoying to not see the signs of a problem until it ended with a puke. I hope this is just a fluke and not goign to start more and more of the same. Samuel just cannot eat much if anything by mouth. That seems to be the solution. Explaining that to him and the cruelness of it all is just awful.
I have been horribly grouchy today because at some point, I would like to sleep. Mark's mom was kind enough to come over and watch all the kids for two hours, long enough for us to eat dinner out and for me to get some new jeans that fit. All my jeans are falling off. It was nice, but evident that getting away solves nothing and it is impossible to "get away" in that little amount of time. Impossible to reconnect with my husband because there are just too many things going on. He wanted to know if I wanted to go to Applebees or Mazatlan. I chose Mazatlan because the people at Applebees are way too happy and friendly and I was way too grouchy. At least at Mazatlan, then come quietly and leave the same way. No chit chat about crap that doesn't matter, no quaint flirting, no silly jokes. Not in the mood.
Samuel did fine, as did all the kids. He managed to not poop until we got back. I, of course worried about him the entire time. And A.D. was fine too. He said he missed me and was quite a cuddly boy when we got back. Then pooped five times before going to bed. I guess this was good since everything came up earlier. The food thing is really frustrating because he is running out of food choices by mouth until he learns to chew food up completely to the water state. He puked up half inch and larger chunks. We go back to the GI next week. Blockages now are hard to diagnose without the bag. It is hard to estimate loss of water, etc. But last night, he was just miserable and nothing much was coming out so I wonder if this has been going on a few days. The last week has seemed extremely bad compared to the one before and my patience for it all is wavering.
Last week I dreamt that we went into Seattle and our Onc had had a meeting with the staff and they collectively decided that Samuel needed to be back on the full treatment plan. Including full doses of Vincristine. We called an immediate meeting to discuss it since we were not in of the original discussion and I just wanted to cry at the thought of it. It was unbelievable. I ran into the social worker on our way to the meeting and was reminded how worthless he is in any matter of confrontation. If we ever needed someone on our side, he is not the one. Well, the meeting went bad and I thankfully woke up before going to jail or CPS was called. But it really imprinted on me that we need to get some things figured out. I know our Onc would never do what I just wrote, but the dissatisfaction that I have growing toward that particular establishment and how things are run is driving my unconscious thoughts now. Obviously something needs to be done. Supposedly LTM should be easier, not more difficult. It was a pain before, but now not having a bag for Samuel to poop in has changed everything.
After our last few trips to our former hospital, I told Mark that maybe we should consider doing LTM there. He about fell out of the chair. There would be a lot of benefits to coming back here, but drawbacks as well. Obviously NOT to the same Onc. Not ever. But we talked about exploring it as an option. I called and played phone tag with our former social worker until today when we finally connected. She visited us every day for three months last year and unlike the ones in Seattle, did get to know us well. I, of course, did not mince any words about anything going on, or our feelings toward them, etc. I also told her I was grumpy due to lack of sleep. She asked why Anna was not sleeping. I told her it was not Anna, it was Samuel. So I layed out our issues with his gut, the Seattle drive, the scheduling, the constant drama and how I need to simplify some things or I am going to lose it entirely. She suggested that she would speak with the new Onc there whom "everyone loves" and see if he might be interested in taking on our care. If so, then we would meet him and check him out. I also told her that if there are any surgical/hospital admits, they will be done in Seattle. They know why. This may be an issue but at this point, we need to do what is best for our son, not them. It was a good conversation and we have not really chatted in a year or so. A lot has happened. But when I told her that we needed someone who was agreeable to what we are willing to do treatment wise, she said that it simply means we are doing Palative care. Palative care for a cancer patient means that you are expecting the worst, hoping for the best, still working toward a cure, but choosing quality of life. It is a very harsh term to hear and almost felt like a slap in the face. Maybe because of her definition. I don't feel we are doing Palative care. I expect the best outcome, period. But in their terminology and training, I guess we are Palative care. They still think Samuel will eventually relapse and die. As Mary said, last year, Samuel had no quality of life. Now he is happy and home, and normal, but just poops a lot, and lives with pain. It is a life, just not a great one right now. Maybe in a year it will be different. But ultimately, if we switch our care, it will be with the intent of Palative care. I discussed with her the option of going through a year of LTM and then stopping altogether. Of course, she told me that everyone will just say we are at a high risk of relapse. When haven't we heard that before? I told her I had already had that discussion with out Onc earlier this year. Our only guarantee with further chemo is more GI issues. In that respect, when all the choices are taken away from you, it is a void argument. Of course, we know tons of people who would continue to poison and poison their kids even in Samuel's condition due to the fear of the cancer. We will no do it. I don't think that Oncs know what to do with parents like us. In their minds, Palative care is still treating with some type of poison, until the cancer takes over again, then doing any last ditch unproven poison that the parents will go for, even though they believe ultimately that their child will die. So I guess if we do meet this One, my definition of Palative care will have to be one of the things discussed upfront. Let it be known that I am not giving up and feeling like my child will eventually relapse and die. Sure, all cancer parents fear that, but deep down in my gut, I don't feel that is truth. But ultimately as Mary said, we are choosing to give him a life free of poison. We are choosing quality of life. I cannot live with any other decision. In my dream, when faced with the thought that Samuel was going to be poisoned again with things that I know will ruin his body, it brought on a pain that I carried the whole day. We talked about a lot of what happened there, and a lot of what has happened since and she told me several times that she understood where I was coming from completely and would do the same in our position. This is a social worker who is also a mother unlike the one in Seattle who is a man with none. Big difference. And someone who could remember us as people and not simply as a chart meant I did not have to spell it all out. She gets it. She knows that I am done and could kiss it all goodbye at any moment. Well, our call was cut short by Samuel puking so I will wait to hear what happens on her end now. By choosing to go back there, that opens up the option of home health care for labs, or any IV needs, as well as first thing in the am sedation. 8am. Not 1pm. We just need to take a step back, again and figure out where we are going, and what we are willing to do.
But that conversation really makes me need to ask our Onc if he is considering us Palative care. I don't think that he is the type of person who would, but he has surprised me before. In thinking of the big picture, and the fact that we are now 18 months into this, a boy's treatment plan is a bit over three years. We still have 2.5 years to go if we followed the protocol. In total we will be doing chemo 4-5 years. This seems ludicrous. Not that I plan to do much of any of it anyway, but the longevity and the stats just don't add up to me. We would be finishing a protocol we have never followed and dragging it out until Samuel is 6ish. Then several more years of follow up, labs, etc. I just want to break free of this system I don't believe in. Or at least get back into a place where it is manageable especially now when everything seems so overwhelming. No wonder I could not really enjoy the night.
10/16/05
No, it is not any better. Well, I take that back, the days are marginally better, but the nights have been awful. I have been up almost all night again. I slept from 12:30-2:30am without interruption. After that, it was tend to Samuel's butt. Either he cannot poop, he poops every five minutes, he thinks he needs to poop, he wants to get into the tub, sit on the toilet, or just get away from it all and there is no place to run. FTR, I want to get away too, but there is no place to run. I am surprised Samuel is even up today since he slept from about 11:30pm until 2:30am. But I guess he is up for the moment. In fact, he is a happy little clam running around with A.D. Why can't I have that energy? Last night, his butt skin looked pretty good, meaning NOT bleeding. This morning it is raw again.
The past week has had similar days to this one. Nothing ever seems to bother him in the day when he is up, only at naptime or bedtime does he have issues. Of course this ruins the day for us because no one has slept. When the days are good, I get as much done as I can to make up for the day before, or the day to follow.
Tuesday we went in for his GI study which no news is back. I hear no news is good news, they said we would get a call immediately if something showed up. I am not really surprised. It was a bacterial test as well as lactose tolerance. I would have been really surprised to find out any bacteria could live in there. And he does not get any uncultured milk products. He did, however, get that "milk cough" that Daniel used to get when he drank it. It seems to have lingered the last few days but was worse after the first night. How annoying! He spent that whole night up coughing.
We were supposed to go into Seattle on Friday to see if the port worked, but we did not after having another sleepless night full of poop. In the grand scheme of things, it was not as important as surviving that particular day. Some days you just want to stop the world and get off. Well, since I cannot do that, I will just have to tell all Onc's to go to hell. Yes, it has been another rough week. I feel like I am alone in this aftermath. Dealing with all the fallout of a surgery that admittedly no one knew how the outcome would be. We are a bit over 10 weeks post op now, yes I am still counting because it has been such a nightmare.
Speaking of alone, I have been alone all weekend. Mark went on a short hunting trip hoping to fill the freezer with meat, but as far as I know, he got nothing. Maybe he did better today. At least that would be one worry gone having food in the freezer. He called last night to say he wasn't seeing anything and it was cold, stormy, etc. He is camping about two hours away from here. He is coming home this afternoon and I am so glad. This is so much more depressing when you do it alone.
I got a lot of notes wondering how we were, hoping it was better and we were enjoying life. Hoping no news was good news. Ha ha. No news simply means that I am tired of writing depressing angry entries into this log. But I guess I just don't know how else to feel. I feel totally and completely alone and having Mark gone only magnifies it. I have watched this whole year slip completely by again knowing that all the goals I had in mind will never come to pass. We are still dealing with consequences of chemo. This is the price Samuel will pay for his life, for the rest of his life. I hope he can learn how to deal with it and move on without the animosity I have. Did we have a choice in this? Was there ever a choice? Not at the beginning. We did not know any better. We trusted man and not instinct. I want to separate myself from it all. Separate myself from them, those who cannot help us, the doctors. I want to make it all better. I cannot. It is just not a great emotional place to be in. Samuel lives with pain every day. In the last 18 months, he has lived with pain to varying degrees. When I think of people ho live in pain on a daily basis, old people come to mind. Not children, not babies. Maybe athletes who have an injury, but this is usually temporary, not long term. It is old people who live in pain daily just living normal lives, doing the things we take for granted. Being able to walk without pain, etc. In Samuel's case, it would be being able to poop without pain, and a normal amount, not a constant supply. Samuel has lost about 9 months of life experience in the last 18 due to being either comatose, or incapacitated by pain. Can you imagine if you just woke up from a nine month misery? Think of everything you would have missed in the last nine months. In a 2 year olds life, that is a lot of learning, discoveries, play, etc that are just gone. We have talked of things getting better when Samuel is able to be potty trained. At least then the skin issues will ease up. But when will that be? Between not being mentally ready, and the lack of bodily control, it could be awhile. Someone told me that while it seems bad now, there will come a time when it will get better. Well, I have been waiting 18 months now for relief and I am just not seeing it. After all that time, it is hard not to be bitter. I have seen too much, I have done too much, I know more than I ever wanted to, and yet, I have never seen anything like it. I have not found one similar case that even remotely compares. Just makes me wonder why. Why us? Maybe I cannot find one similar because the kids who started having problems did not live through them. I should count myself lucky that in all this, we did not have to bury Samuel. And I do feel very lucky, and thankful. I just want a break from the daily pain he has to go through to live. Is that too much to ask?
Monika sent me a note wondering where our support system went. Did we fall through the cracks? Can anyone really help anyway? Monika, God bless you. I know you would do anything you could if you weren't on the other side of the continent.
Last night before I went to bed, I spent some time thinking God for allowing Samuel to live another day. He is so precious, he doesn't deserve this. No one does. Where do we go from here? I don't know. I am sure we will be making the trip to Seattle this week. Kaysha turns 9 on Thursday.
Thanks to Kerry for the box of clothes and goodies. Everyone found something they loved and A.D. will be warm. Much love to you.
10/9/05
See 9/18/05. I need sleep. I need the nightmares to end, literally. They torment the little sleep I get. We let Samuel eat dinner, and we paid for it all night. Trying to resolve a gut problem at 2am is not my idea of fun. Like most bad things, they always seem to happen at night. It is so frustrating knowing that NO ONE knows when this will end for Samuel. Just when the wounds are starting to heal, someone rips the scab off again.
10/6/05
No clinic visit for us today. I canceled it yesterday when Samuel and A.D. still were not over their colds. They are better, but still runny noses abound. And Kaysha and Daniel are not battling it. I managed to keep it away and Mark also seems unaffected so hopefully it stays that way.
It has been a long couple days and my mood could use some improvement. But with the constant crap that seems to come from every direction, I see no end in sight. My word for the days of late is "Craptacular." Stolen from the Simpson's, but it was a gem. Mark has worked the last three days and it was a unique adjustment for the kids. Kaysha wanted to know if he was working part time or full time. Daniel said, "But Dad doesn't have a job!" Samuel just asked where Dad was and A.D. called for Dad to get her out of the tub, to no avail since he was gone. I say the days have been craptacular since it seems all I do is change butts. No different from any other day but there is no one to commiserate with I guess. Samuel still screams bloody murder at diaper changes and every third one or so, we just put him into the tub. I keep waiting for it to get better, or slow down, or just NOT hurt him and it just doesn't change much. It will appear to, and it is only brief. I get up at least once a night to change him. A.D. has been waking at night too but probably because she does not feel well. I keep wondering why I am tired in the day, now I see why.
Have I mentioned how DONE I am with the whole hospital and all the crap that goes with it? Since canceling our appt today, it was rescheduled for next Friday with our Onc leaving a message with the scheduler to clarify with us that they need Samuel's labs BEFORE sedation. However method needed to get them. She told me that and then gave me the times for labs, visit and sedation, which were 10:15am, 11:15am and 1pm respectively knowing full well it was not going to go over well. I was not happy to put it mildly. Sedation means no eating or drinking 8 hours before. Since Samuel does not get fed at night now, that would mean that he would have to go from bedtime to 1pm with nothing. Oh, and the kicker was labs, however they needed to get them. I accepted the plan at first telling her that there would be problems if the port did not draw. Then after thinking about it and getting madder, called back and told them to change it to allow us to go in a day beforehand to see if the port will work and sedation first thing the next day assuming they get their precious labs. But then this morning, I just decided that sedation and poison can be put on hold and they just need to make the port a priority because obviously we are going to have to have a working line or this will be a constant issue between us and them. As it was planned, we would be in Tacoma next Tuesday for a GI test which is a no food or drink before too. Then Wed and Thurs in Seattle and my eyes are rolling back in my head just thinking of it. I called the scheduler this morning at 8am, apologized for being such a pain, but told her to tell my Onc that Samuel is NOT a dog and we will not allow him to be tied down and forced into doing labs for NO good reason. Unless it was an emergency, it is not going to happen. If he wanted to make labs a priority, then they better make the port a priority instead. And we were not coming in Wednesday or Thursday either. I told her that while I am sure my Onc doesn't have to worry about keeping his lights on or making his house payment, I do. Someone here needs to work. They cold make it for Friday and with our Onc, not his wife, or another Onc I don't care to meet. They can put their spinal tap off until next year, I don't care. In fact, if I never come back I don't care. I thought I had the no poke thing straight with the Onc on the phone but obviously, he either did not understand simple English, or just did not want to argue so had his scheduler do it instead. Whatever. Moral of the story, you back me in a corner, don't expect anything less than me coming straight at your throat. I am just really irritated by the whole thing. The scheduling is ridiculous, the waiting for a child who has ENOUGH problems already. Way back when I worked in a medical clinic, procedures were scheduled by youngest first to oldest last for obvious reasons. And any special needs cases were also first. I think Samuel more than qualifies. At this point, I am amazed that they think we will just do whatever they say.
If labs were a simple finger poke, I would be okay with it. But it is not. It is a draw from the vein. This had to be the single most awful thing we did the day of Samuel's diagnosis. He had to have two draws, one in each arm. They rolled him up in a sheet, to try to keep him from struggling. We had to try to calm and reassure a two year old. Samuel screamed. I cried. Kaysha and Daniel were in the room next to us and they were crying. Then later, we had to do the whole thing again for someone to start an IV which they did not get until after someone tried five times and finally collapsed a vein. Then another person had to give it a go. Mark and I both talked it over again and strongly feel that this experience was the most traumatic thing that happened to Samuel at the hands of a human. And one we had to partake in. I will never forget singing Twinkle Twinkle over and over and over and trying to stop crying so I could keep singing it. I seriously doubt that things would be any different now. If he was 5 or 6, or even a girl, you could probably reason with him and help him to understand, but not at 3. He will not calmly sit through it. This is not emergent, I see no need to relive this. And it will be like reliving it. Oh, and I like how they say, "Well if you don't want to hold him, WE can do it. You don't even have to be with him." Oh, yes, that makes it all better. Just makes me want to run the other way...or slap someone.
I am just done. This last surgery, and recovery have wore me out. Wore out my nerves and my patience. When does Samuel get a break? Oh, yeah, I forgot, there isn't one. Daniel told me a few days back that he was afraid of dying. I told him that dying is easy, it is living that is hard.
On a positive note, Mark is home the next few days and will be busily snapping pouches!
Much love.
10/4/05
Something happened today that has not happened in over 17 months. Mark got up and went to work. And talk about slipping back into the old, he is working with his former boss. There are a variety of reasons why he did not want to work for this person, with the main one being that when Samuel was diagnosed last year, Mark did not get his last paycheck from this man until a month after we came home, in August. So from April to August, this man owed us money and could not bother to get it to us at a time when we needed it most. See the problem? Last year, Mark swore he would NEVER go back to this employer after what he did to us. Well desperate times call for desperate measures I guess. The benefits of working for this man is that he pays extremely well, when you get paid that is, and he is very flexible in when Mark can work. Read, Mark can take a day off whenever, with only five minutes notice. So this week he is working today and tomorrow and we should see a paycheck..........................well it better be in less than two weeks or I will seek out this man myself. Mark has worked for this man for several years in the past, off and on, for various reasons, usually he gets sick of his BS and quits. But at this point, you take what you can get. Samuel has an Onc visit Thursday which we may not make if he still has a cold, a GI visit next week and another a week after that. God only knows what will come up in between.
It just seems odd to be home with the four kids, and Mark off to work again. Almost like none of the last 17 months ever happened. Other than that A.D. is a year and a half older and we missed out on all of her Babylon. I think I am just now realizing this. It is really truly sad. I wanted another baby for the same obvious reasons we all do. And of course the baby things, the newborn phase, the baby clothes, the firsts, the BABY WEARING! Of course that. And none of it was enjoyable. Or really happened. I thought I would wear A.D. every day just like I did Samuel, and it just never happened. Now she is 30 pounds and really does not need to be "worn" much. Nor do we go anywhere to wear her. And there will be no more babies for us, Mark took care of that. That is fine because after this last year and a half, I don't think I would/could bring another life into this mess anyway. But it is just sad. A.D. is a very sweet little girl.
Trying to get back to a "normal" life does not come without it's challenges. Trying to get back to normal highlights everything that is NOT normal. I have had some really quality time to think some things over, talk about some past things with Mark and just try to iron out the seams, as it were. Going back to our former hospital certainly made us think and discuss a lot this week.
My grandma Delma's best friend, Roberta, called me on Sunday night. I used to keep in touch with her a lot, especially after Delma died and for the years beyond. Up until Samuel got so sick. She called to check on everything here. It was SO nice to talk to someone who has known me since childhood, who knows my entire family and whom I can be brutally honest with. Like Delma, you can tell Roberta anything and you don't have to water down the truth. And she won't tell anyone if you ask her not to. So I was able to dump a lot onto her shoulder about stuff around here, especially regarding how we have managed for the last year and a half. You manage, or you die. That is it in a nutshell. You go on, or you will suffocate in despair. It is that cut and dry? Yes. She wishes she was here to help. I do too. Then there would be someone here who would KNOW how to help, who would know what would help. I told her it helped a lot to just tell her the stuff I did. It truly did.
Something that has stuck out in my mind this week was a discussion I had with one of my ND's colleagues. He called me to discuss some of the GI issues and I briefly explained to him all that has transpired in the last eight weeks, then the previous 17 months. After we got through Samuel's care needs, he then stopped to ask ME how I was doing and what I was doing to stay sane and healthy. That stopped me in my tracks. How often does a doctor ask about you? Certainly does not happen at the hospital, at least not beyond the obligatory meaningless "Hi, how are you?" Anyway, it was quite a concept since I have never even met this person. Maybe I just sounded bad on the phone. Nevertheless, it struck me and was nice that someone I did not even know gave a crap. He actually told me that his firstborn went to abdominal surgery after it was two hours old and had similar gut issues as Samuel had went through in the last few months, so he could kind of understand how it was here. But of course, he did not have the 17 months before it piling up eating his sanity previously. As I told Roberta. anyone can deal with a bad day, but when the bad day lasts for weeks after months of a horrible experience, then what? I have not had enough breaks from bad days yet so when things turn south here, it seems magnified. It is always interesting when people say they "have some idea of what we have gone through." No, you don't. You have no clue. Just as I have no clue what you life is like, what you go through. There is no way to compare tragedies, or lives, ever. You cannot imagine, don't try. Most of it I would not even believe, other than that I have lived it.
But the conversation did get me thinking of something I had in the back of my mind anyway. Balance. Trying to get some sort of balance to my life. So it does not feel like I work 24/7, and do nothing for myself. So since then, I have tried to get into a small routine that feels more balanced. I still get everything done I need to, but am not doing three things at the same time. So I can sit down and relax at night. Since starting to do this, I went to bed a bit early one night thinking I was tired, then laying there thinking, praying and talking to God. One of the things on my mind was how short the list of kids I follow updates on has gotten. In the past month, two have died. It is tragic, devastating and each one has affected me differently. They have been all cancer, mainly leukemias. Everyone follows the chemo protocols, some relapse, try everything traditional medicine has to offer, some live, some die. Tragic deaths. The ones who live, well, they do so with side effects from the poison. Some minimal, some with more. Most people get to the point where nothing else medically will work and then ask for a miracle from God. Isn't this how it all works? We get to a point where we know no one can help us but God? In Samuel's case, it happened early. In that first month. We literally sat in a room with several doctors and knew that NONE of them could help. No one knew what to do. We had barely even begun. We had not invested years like some of these other families have. I knew when Samuel got pneumonia that he would have died then if not for God. He had nothing. No white count, nothing. Nothing but poison coursing his veins. Mark and I talked about the first two weeks, one spent in the hospital upon diagnosis and the next at home, where it "seemed" he was doing so well. Little did we know the the poison was eating his gut out, literally. It is almost too horrible to think about. Most of these other kids end up with consequences that cost them their lives. And a similar thing happens, they seem to improve, then bam, irreversible damage. Again, it is so horrible to think of.
So as I went to bed this night I was asking God why some get miracles, and some don't. And as I was laying there, I got this......IF they were given a miracle, would they even know it? Would they accept it? Or would they turn away and continue down the path that has done all the destruction and gotten them into this position in the first place?
I admit I was up a long time pondering this. In most cases, even if there is improvement, even miraculous improvement, an Oncologist will still recommend MORE chemo. If the patient remotely LOOKS well enough to continue poisoning, 99% of people will continue with it. Why? Fear of the what if's. Scare tactics that Oncs use. They certainly tried them with us. Had we not stopped them HOW MANY TIMES Samuel would be dead now. That is a fact. I have acknowledged from the start of our miracle, that we have indeed been given one. One I do not intend to sabotage. Even though this has been a miserable nightmare, I am glad we learned so much early on and were able to make the decisions we did and save Samuel's life.
Samuel has been doing well. In the last three days we have seen some major improvements. IN the last three days, he started two new botanicals, one specifically for the gut and the other for the gut and to clean out his clots. I started them both on the same day so I am not sure which one I am seeing work, but his poop is better. Both help in that matter, but one of the botanicals we have used before so I think/hope it is the new one. If the improvement in the gut is that dramatic, I can only hope it is working on the other part as well. He has also started asking to sit on the toilet, not having much luck going in it, but at least the concept is there.
Roberta was asking about what Samuel eats, if he eats. I told her he is mostly tube fed which she thinks is just awful, but only because it is not normal. She understands why he is tube fed, but looking at the grand scheme of things, knowing he has never really gotten his true appetite back, it does seem rather awful. The beauty of the food that goes into his tube is that it IS food. Not formula. And if he will eventually eat the things that go into his tube, he will be set for life. After we got him cleaned out from the top down, I started holding all his usual snacks he likes to eat in the day. I only allowed him to eat the things that we consider good and that would not constipate him. After a few days of this, asking for something, and me saying no, then giving him other choices, he started eating some new things. Two days ago, he started eating some cereal after process of elimination of course. Now he loves it and asks for it. This is progress. Beats out crackers and toast. Last night, he asked for some things and I offered him dinner, one of his favorite meals from before he got sick. First he said no, but then he actually tried it, then sat up at the table with all of us to eat. He hasn't done this since he got sick. We were pretty happy last night. I hope that the trend continues and he will at least keep trying new things.
Well, the day has begun and it is time for school. Much love.
9/29/05
We had both commented on how quiet things have been around here. Meaning, the phone wasn't ringing off the hook from Children's Hospital. We had both been surprised we had not heard from them regarding the port, or lack of labs since it seemed such a critical thing over the weekend. Well, I guess they finally caught up yesterday.
I was unimpressed to see their name on the caller ID yesterday. I was making a cake and working on school with the kids so did not answer it. We and the ND have one idea we are thinking might help eat any clots and also scar tissue in Samuel's veins but it might take a few weeks to get to a therapeutic level. So I have wanted to buy us some time to try it first in order to save the port and possibly save us some heartache down the road. I should have it in hand today or tomorrow. So I still need a month or so from now to give it the chance to work. I assumed that with the urgency expressed over the weekend, that they would want to do something immediately.
I listened to the message left by our Onc. Usually the scheduler calls but maybe since I did not return her call for over two weeks last time, they had the big gun call. Anyway, he expressed interest in knowing how Samuel's gut was and then about some options with the port that he wanted to discuss ASAP. Call him back. That was nice of him, we both thought. And going through an RN to get messages back and forth was a pain over the weekend and I wondered then why HE did not come back and ask us things himself.
So I called him back and briefly went over the GI visit and what transpired there. He was happy about that. Then he went over his choices for the port. Rat poison was never mentioned. When we came to Children's last year, I told him about that which was done at our previous hospital and he said that was not acceptable then, so I am glad it is not being considered now. Not that it would EVER happen, because it wouldn't. His thinking was that the port works one way, so they can sedate him for spinal taps, or give him fluids if need be. The only thing they need blood return for is Vincristine which he wasn't sure if he would ever get again.....and I of course said that it was NOT a problem because he will never get it. So then that means that they would leave it as is and just poke him for labs occasionally. The labs they want are not a simple finger poke, but an arm vein draw. The other option is to have it revised which he is not feeling good about. I reminded him of the clots. He and I are both in agreement that removing it now is not an option, but at the same time we need a line. Labs are important to me simply for the electrolyte balances and liver functions. The counts are a nice touch, but I am not worried about them. But, if he should get sick, a fever, etc, they will need to draw and without a working line, he will have to be poked. So, while it does not seem like a big rush, it kind of is. After he went through the options, he asked what I thought. I told him that poking Samuel was not an option and we need to save the port. We need to do everything we can to save the port. So I told him that I had been speaking with the ND about something that may help, but it might take a month, or it might not work at all. I wanted to try it first before doing anything invasive. He agreed. So we will go in next week for the spinal and they will access the port for that. They always try for a return so we can see then if a week of therapy works. If so, great problem solved. If not, we will plan to go back in a month to try again. If it does not work then, a line study will be done. If the port is mechanically fine, they will try a TPA infusion to dissolve any clots. This takes several hours of a slow drip but would be worth it if it works. If none of that works, then he said he will start calling around. Leaving the port in is not an option either as it will grow a bigger clot over time so we will have to address it. The question is, when. He is weary of doing anything there with the VA shunt right next to it. No one wants to revisit that. But the question of whether or not he even needs the shunt is very valid. It would be nice to have it all removed someday. We may look into that if possible. Not wanting another brain surgery but at the same time, it it could all be removed then the chances of clots growing on lines goes away as well. I have bought us some time to work it out here, and I am thankful that he was agreeable to that. I guess if you look at the big picture, what else can he say? None of the options on their end are great so if it works because of something we might do, that is the best thing that can happen.
Samuel's suppository did not ever work out. Could not get it in. The Onc suggested cutting them smaller but I am sorry to report that Samuel's anus is exit ONLY. And it is still sore. However, we started working from the top down since we were unable to do bottom up and things seem better today. He slept last night, all night, without pooping until he ate today. Ideally, it would be nice if he pooped after every major meal. We got some really nasty old stuff, that looked really familiar yesterday. Familiar like bag stuff that was really old, only coming out down below so I wonder if we got all the residual out. I scheduled his follow up test for the second week of Oct. I had hoped they would do it sooner than later but apparently they are full.
And now, A.D. has a cold and Samuel has it too. My throat is scratchy and I feel it coming my way. A long trip to Seattle was all it took. A.D. has been symptomatic for a few days now. That really sucks. But just another reason why we want to get the port going. I don't expect Samuel to get really sick, but as fate always seems to have it, it happens at the worst possible time. That would be now. Despite this, Samuel is feeling great and has more energy than any of us. Suddenly, in the last week, he has really bounced back. I am very thankful for that. Probably the combo of not pooping every five minutes has helped. I have even had a thought of my own occasionally.
Thank you for your prayers. Much love.
9/27/05
I called the GI clinic at our former hospital yesterday and was able to take someone's cancellation this morning with the female GI. I have said this now several times today. I am SO GLAD we did this. I am SO GLAD we went there and SO GLAD we saw her. I like the male GI as well, but this particular GI is very thorough and most importantly, knows the history.
I spent the eve last night getting together a quick concise history from the time we left there last year to the present. I managed to get it on one page with current complaints which was really good. I figured it would be easier to have everything in order chronologically so I did not forget and they did not have to write it all down.
Of course, the drive took about 25 minutes as opposed to 1.5hrs. Such a big difference. I still felt that sick feeling as we got closer and then as Mark pointed out all our "old rooms". As we headed over to the GI clinic which is in the newest building, I could not help but think of Monika as I noted the differences between hospitals for profit only, such as this one. And hospitals for teaching, etc. Beautiful building, landscape, wall art, with attention to every detail. Huge waiting areas, nice couches, etc. The view out of this office is amazing. A fountain and rose garden is below a window that cascades from ceiling to floor. Samuel was afraid of falling out. It was really unique. Mark got a great view of our former Onc walking about below. Thankfully, I am blind, right?
We did not have to wait long before going back and the waiting room was not standing room only. That could be a good thing, or a bad thing depending on how you look at it. But today, it was a nice change from what we are used to. The GI was very prompt and remembered us immediately. She walked in and put her hand over her heart and you could tell she was trying to catch her breath. The last time she saw Samuel, his body was limp, he did not speak and was in constant pain. He was afraid of everyone. So I am sure to see him playing, talking and happy was quite shocking. Then and there, things came full circle. In total I spent 45 minutes of face time with her. We went over everything and I mean everything. From butt sealed shut to all the shunt surgeries to all the blockages to the takedown and everything in between. There was a lot of head shaking and sighing on her part just trying to comprehend it all. Thankfully I wrote it down so she will be able to look at it later. I told her all about "obliterated" which is a word I will never forget. And you know what? She listened to everything, all of it, on the same level with me. Not the "I am MD, you are scum," attitude we have gotten from others. It was really nice. One of the things I noticed in the room was an organic foods magazine that they subscribed to. I thought that was cool since I have never seen it, and more because it was here. When she asked about Samuel's formula and I told her about his diet, her eyes did not roll back in her head and she did not call the dietician. No, she told me what a good job we are doing and how great he looks, how awesome his weight is despite his GI issues. Speaking of which, the last time she saw him, he was 90cm tall and 13.8kgs. Today he is 98cm tall and 16.8kgs. Imagine what a huge kid he looks like to these people!
We discussed all his current problems and how they relate to "obliterated." If the mucus membrane is destroyed and they think it will grow back over time, how long is that? A week, a month, a year? That is a long time for pooping to hurt. She agreed. So starting with the constant diarrhea, she wanted to x-ray his stomach to see where the poop was. She told me that "we will look at the x-ray." I thought, okay, WE will. LIke that ever happens. But sure enough, she came and got us to go look. This is the first x-ray I have seen of his gut connected. She suspected that he had poo in the sigmoid colon, which is his rectal pouch. Thought it might be impacted there and not emptying and thus letting the newer poo skim over the top and rush out. There is definitely poo there sitting. In fact, he did not poop until 3pm and we looked at that film at 11am and it was full. He had ate, and nothing came out. Do we have a new problem? She does not feel it is functioning properly and wanted to get the poop out and see if things improve. Unfortunately, the way to do this is an enema. Well, we tried, but his anus is too small to get it in. So I will have to call tomorrow and let them know that. We have altered his diet tonight to try to loosen it up tonight but it seems slow.
We got some of the acid reducing meds as well to see if we can ease the burn down in the anal canal. She was just appalled at the condition of his anus, and today it looks pretty good. She winced at the thought of him pooping like that, and struggling to get out something more formed. I guess I finally got the doctor I need. The one with some empathy. I just now realized that that is what sticks out most about our visit. The fact that she was able to feel something for my baby. The first thing she remembered were his ducks. He did not bring a duck today and so that was really cool that she remembered that now over a year later. She recalled how sick he was, how sunken his body looked and how he was so afraid and in pain all the time. I knew she was the type of person to remember us because she always spoke and was friendly when we would pass in the parking lot. She always asked about him even when not technically working. At any rate, she was uncertain if the acid reducing drug will be helpful, so we shall see.
We also got some butt cream that our insurance actually paid for since it was RX vs OTC. That was nice since we are using so much of it and at $8 a 4oz tube, it is getting costly. We got this one, and 5 refills.
The last thing we need to do is go back for a 2.5 hour test to check for several different problems I don't think he has, but will trust her judgement. Then follow up in a month.
She asked me if I had taken Samuel to see everyone "Upstairs" meaning the hospital. I told her we had last year but not recently due to the many trips we make the opposite way. So after seeing her, we headed over the the hospital. Mark told me he saw our previous surgeon in the lobby and did not know for sure if he remembered us. I am not sure how HE of all people could forget all the surgeries HE did. But whatever. Then we ran into the other General Surgeon, the female, who not only remembered Sam, but called him by his first and last name. She never did any surgery on him, just rounded for the other in his absence. She even mentioned she was wondering about Samuel a few weeks back. Go figure. She always wore clunky high heels and I could always hear her coming. I looked down today to note the same shoes. She also mentioned that A.D. was probably awful when we went home after spending so much time living in the hospital. I told her that she was in fact, lost when we came home. Funny that she would think of it. She also noticed A.D.'s blue and brown eye.
We went to the 6th floor and ran into Michelle, a former RN whom we have not seen since leaving last year. And Kim too. We chatted a bit. Then went to the PICU where it seems we spent most of out time and saw Abbey who was the RN we had most up there. I haven't seen her since leaving. We also saw the social workers who made things bearable while there. The attending ICU doc came out. She was there our last week, when things were BAD. She was just beside herself over Samuel. She wanted to know everything and did not miss a beat. This is the same doc who told us we should not leave because we had not exhausted our resources there. Glad we did not listen. I pointed out to here that we spent 8.5 weeks there. Then went to Seattle and went home 3 weeks later. She asked about the shunt and I told her he ended up with 7 shunt surgeries to get it right. She said she was glad it wasn't just them then....as if no errors were made here which was why I told her how long it took Children's to "fix" the mess. But it was a nice conversation at any rate. Everyone was amazed at how big Samuel is and of course we showed everyone that he does not have the air bag now. They all wanted to know what we were doing there of course and what his leukemia status was. At this point, you say he is in remission, or relapse. There is not other in the minds of a doctor. In my mind, I say, we are DONE with cancer. What is his leukemia status? GONE. We are done with that. What are we doing for chemo? Yes that came up too. My answer, as little as possible. They were all astounded at our "ticking time bomb." In fact, I just remembered that it was this particular MD who told us this about Samuel. And his cancer was the first thing she asked about. They took some pictures to show the RN's who weren't there and I am sure we were talked about well after we left.
We lunched there while waiting for the RX's. That seemed so funny to eat WITH Samuel instead of without. He enjoyed it a lot. Then we took a walk to the nearby park where Mark used to take Kaysha and Daniel when we were inpatient there. I have never seen it until today. There were lots of ducks for Samuel to see. He loved it. He played and has absolutely NO FEAR on the toys. He was crazy. Finally about 2pm, we headed home. Got home at 2:30. Wow, how fast. We spent about as much time there as we would for a Seattle trip, but the majority of it was just playing and visiting. It sucks that the better qualities of these two placed could not be integrated. A few people would need to be fired.
All in all, it was a good day. Finally someone who wants to help Samuel. I wondered how it would be going back to where it all began, and in this case, it was the best choice. We were taken seriously. Finally!
9/24/05
The port did not draw. Nothing! Flushes great, no return. Not good news. A whole new set of problems, choices, and more travel to the place I have grown to hate. The port was deaccessed today so Samuel is free, but now we will need to return for a line study where they inject dye in and follow it to see what it does. I doubt this takes very long to do compared to the other "studies" we have done in the past. But by the same token, none of their dye studies have ever served us well. We are pretty disgusted even though we have gotten 17 months out of this line, which is really good in the grand scheme of things. The clots on the line are a problem. The two lines in the same place are a problem. We knew last year we would have to deal with this when the VA shunt was done. This was why they did not want to do the VA in the first place. But we did not have a choice as it was a life saving measure at that time. Two lines in the same place are BAD, not common and produce the issues we now have. Given the choice, no surgeon wanted to do it for this very reason. As far as we know, the clots are on the port, not the VA since we saw them via sonogram at our former hospital prior to leaving. But there could be some on both now, or they could have grown together and be covered with a sheath. I would like to save the line. I have a few thoughts and while it is not an emergent thing, we will need to do it quickly and the method I would like to try may not get here in time to help. At any rate, I would prefer not to do another surgery, but we need a line that works.
Our former hospital's idea of keeping the lines functional was cumadin, AKA a blood thinner, but best known as RAT POISON. Same thing. Yes, you read that right. Well, we won't go there again. Pulling the line and dislodging a clot can kill you or cause a stroke depending on where it goes. Not interested. I don't know what just leaving it alone for the rest of his life will do. And we need a line of some sort that does not require invasive means to get labs, etc. The port was the best thing we did for Samuel and we did it early. Thinking of what we will do know brings back lots of memories as it was the first surgery he had, and three days after it, he got pneumonia, and a staph infection in the line and then we did not go home for three months. It seemed to start it all. So I am a bit leary of having another placed, though we certainly have done worse things. I don't even want to think about it right now though spent the majority of the afternoon researching my options. There just aren't many cases with a port and VA line together to compare to. Not happy at all.
Our drive in was made almost an hour longer due to a football game at the University today. Unfortunately the U and the hospital are the same exit on the hiway and there is no way to bypass it. As we finally passed the stadium and huge crowds of people apparently enjoying themselves, Mark commented on how different their lives are than ours. We talked today of all the things we wanted to do this summer and I realized how it has all slipped away from us again. Getting A.D. dressed to go to town made me realize she has very few winter clothes. My wardrobe needs to be burned and I am sure Mark feels the same way. Thankfully, the rest of the family are faring well and I am sure Kaysha will rate on her upcoming birthday. It is amazing how a long drive gives you time to contemplate things. The feeling that I am not doing what I should be doing to fulfill my soul in this life has crept in again. I don't know what to do about it. It feels like we are just stuck in a vicious cycle right now. Every time it seems we might break free, we are sucked back in. I don't know what we need to do to survive right now and I sure wish I had some time and resources to figure it out. We dream of the future when life is good, and it is so elusive. Mark and I talk about having 24 hours alone together to just live, have some fun, do something by ourselves and we know it is so far off. My soul longs for that. To go on a day trip, to go out to dinner, to go shopping for things we need to survive. Press on, I guess. My reward is in heaven. I sure hope so. Seeing people seemingly carefree today makes me long for that day. A day to go enjoy something.
As it is, we need to go see the GI as soon as we can. I hope this week but I don't know. Then we will have to return to the hospital as well. Samuel had another good day today. He managed to NOT poop for the entire time we were gone. We left at 9:30 and got back at 1pm. Pretty good. So at least if we have to be making road trips, he is thankfully not pooping the whole time. It has made feeding him a bit tricky though. We talked about taking a day trip to the beach, setting up the tent and having lunch or something. Something that would be fun and not cost a lot before the weather turns. I hope we can swing it.
Well, I am tired and off to ponder tomorrow. I am sure our Onc is NOT going to be happy when he arrives Monday to no labs, no working port, and no surprise, Samuel has more problems that we all need to deal with.
9/23/05
Well the "short" trip that I estimated 5-6 hours for ended up being 10 hours. Perfect end to a crappy week and yet it is not over. Samuel's port flushed well but refused to draw blood. Every six months or so, we have this issue and they order a medicine that dissolves any formed clots. Usually it works in an hour. Well, today it did not. My expectation was to be out of there by noon, but instead, at noon we were down in x-ray to get a chest view to make sure the port was still in the atrium and not in the jugular. As our Onc said, everyone takes a double take at the films because Samuel has two lines going into his atrium and they seem to meet. His shunt and port go into the same place. I think someone today was trying to figure out why it went up his neck at first. Again, because our chart is wrong saying he has a VP shunt, not a VA. We ended up waiting all afternoon in hopes that it would draw, but after four hours, it did not. What a mess. Mark and I skipped lunch, and Samuel and A.D. skipped their naps. Samuel was a little angel who amazes me with his matureness at times. He walked by a lady who three times told me how absolutely adorable he was. He did really well and even set a new world record for how long he could go between poops. That could have made it so much worse, but as it turned out, he and A.D. took turns pooping there but in all I changed three diapers total. It would have been a nice day other than the port. We expected it to be an issue since it has been so long since it was used. So tonight, it it still accessed and we have to return in the morning to see if it will draw, and then do labs and leave. A ten minute thing and another half wasted day. Neither of us are happy about that. Even poor A.D. did pretty well today waiting around so long though we forgot a stroller and that is the only place she will sleep when out and about these days so we won't make that mistake again! It was getting ugly at the end. And of course, our Onc decided that he HAD to get labs today and wanted to find someone to poke Samuel instead. The IV tech asked me if that was okay and I said that it absolutely was not. They could wait. We got the port for this very reason, because sticking him is not an option and they just better get the port working. Everyone feels like it will be unclotted by tomorrow, but if it is not, then it will be considered "shot." Then we will have to decide what to do next. Removing it is not as simple as jerking it out and putting another in with the VA shunt. And the clots on the line have been troublesome in the minds of some of our previous doctors and even sent us to an ICU over it once, so I am not really impressed right now. Just pray it works tomorrow and we don't have to go there because ANOTHER surgery right now will send me off the deep end. Especially one that could be risky. And maybe it is not, but some people sure made a big deal of it all in the past.
The visit with the Onc went well. After we missed our 11:15am apt, we figured he would just show up where we were waiting, but we were told he would see us after the port was working later and we said to just forget it, or have him call us at home, we were not waiting around. A.D. had several moments where it seemed she would not hold out another second and I am sure everyone was tired of her screaming from time to time. But I guess, after being told that we did not care to see him, he made time to show up where we were. He wanted to know how it was going and it is so incredibly difficult to explain to someone what the last seven weeks have been like so I used my latest words, unbelievable, ridiculous and then asked how he would like to change 30-40 diapers a day and I think he got it. The last few days have been good. The rest has pretty much sucked. We talked about consulting GI again and he asked how we felt about the person we saw there last. That was the person who was not impressed to have to take time out of her day to help a little boy whose butt had sealed shut, then reopened like a woman in labor. Of course, this was all beyond their beliefs as to what could happen to a human so she was reluctant to believe it and made us feel like we weren't important. So it was sluffed off for months only to be brought up again when we wanted to reconnect him in February when it became the MAIN reason we opted to wait. How do I feel about her?????? Need I say more. I don't want to deal with anyone who makes a big deal out of doing their job. Sorry, bye. I mentioned that we will go back to our former GI's at our former hospital because it is closer to home, and they were actually both helpful AND make their own excellent butt paste we want more of anyway. At this point the GI issues will transcend any cancer and it would be best to be closer to home for that. The Onc wanted to know what the Surgeons had said and if we were supposed to see them. I mentioned that we were supposed to see them for a two week post op but that their clinic was SO MUCH WORSE than Onc was and there was no way we were making the long trip in with a kid who poops that many times a day for them to just say, "Okay, looks fine, bye." He said he understood. And at this point, I am done with them. They have done their job. The sting of our last stay still is fresh. And at this point, we need someone who is accessible, not buried.
The Onc asked how we were feeling about chemo and I showed him the sign of cutting my throat with a knife. We discussed the one drug/poison that I know for sure caused diarrhea and I said that was off limits. As Mark says, we will all go crazy if we have to deal with three days of diarrhea for three days of using it. Steroids are out. Vincristine is out. That leaves Methotrexate which I don't believe has caused any ill effects in the lower doses so we agreed to only start that in half doses once weekly and obviously stop if there is anything.
I have to congratulate my Onc for being able to listen to all the things we have dealt with in the last seven weeks and saying that this is out of his expertise and wanted us to get a GI on board now for some help. I am sure he wanted labs so badly today so that he will sleep better, but I will sleep just fine knowing that we did what was best for our son and are in complete agreement in this household. No more harm. If it causes harm, it is out. We are running out of options for chemo and that does not break my heart. I think we all had a nice conversation today and all left in agreement for the most part.
We are all tired and the day sucked. I cannot believe we have to return tomorrow again. Ugh! At least Kaysha and Daniel missed out today and will miss out tomorrow too.
9/22/05
The last 48 hours have been a complete turn around from the previous. Everyone has taken the time to catch their breath, catch up on some sleep, and of course, catch up on the laundry. Two days ago felt like jet lag. Like we just went through war and were allowed to regroup. A day of unrest even so. Trying to pick up the pieces of our lives again. Samuel's butt amazingly recovered by yesterday morning and looks pretty well today as well. It is completely obvious the food that caused all the problems and what is more obvious is that as long as he is tube fed, he does fine. But whenever he eats solid food, we have problems. Some, more than others. He will have to be fed like a new baby, introducing one new food at a time so it will be easy to determine what is causing problems. Monitoring everything that goes into his mouth for the rest of his life should be fun....hmm. Well, we are all breathing a sigh of relief still today that for the most part, the screaming every five minutes has stopped. It has taken two days for things to just get to normal here again.
Of course, just in time to head to Seattle tomorrow. We spent the better part of the day cleaning the house and getting all the laundry done in prep to be gone for the day tomorrow. Kaysha and Daniel are going to Mark's parents for the day and night so as to bypass the long day. Good for them! Samuel got excited to go to the hospital when we brought it up because he wants to play with the toys. How sad is that? Mark and I are finally, after 12 months, on the same page regarding future chemo treatments so I am sure that tomorrow's visit with the Onc will be very interesting. He is a smart guy, I am sure he has an inkling about where we stand at this point. Let me just say that nothing makes me feel more strongly that we have made the right decision regarding further chemo when you spend the last week like we did. It has been unbelievable, and just ridiculous. I knock on wood that we will be able to head off future issues with the things we have learned the hard way last week.
Samuel seems to forget hurting the minute he feels better and goes back into play mode. He was just so cute yesterday and really plays with A.D. a lot now. They are really cute. He said two things to me yesterday that just stopped everyone in their tracks because they were so cute. The first was when he noticed that A.D. had pooped. Usually if you ask who stinks and it is by some miracle, NOT him, he will say, "Not me." But yesterday, he came into the kitchen to proclaim to me that "A.D. is a poopy girl." It was too funny. Later, I cut Mark's hair and he scooped it all up and put it in the garbage. Samuel came into the kitchen after Mark had went upstairs to shower and noticed the hair. He asked what happened to Daddy's head and them told me, "You broke him!" Another cute, funny and a little sad thing out of his mouth. He is the most adorable child.
Other than that, we are just thankful for the rest and chance to catch up and recover. Preparing for a long day tomorrow that I pray goes by quickly with little poop outbursts. He did really good today, but we did not allow him to eat much. Almost need to starve him to go somewhere.
Thanks for your prayers and love. We covet those things right now. Much love.
9/20/05
It is 10:45am, I am just getting up. We did not go to bed until 3am. Samuel was hurting, pooping every minute. This lasted from about 6pm to 3am. Water and chunks, like a blockage. I don't know if it was truly a blockage because without a bag, it is hard to tell. It was absolutely miserable. This is day two in a row of the same situation. We think we have narrowed down which food he ate that caused it and pray it never happens again. But we know better. Everything is different now. A blockage with a bag means that the bag is full of water and chunks. Now, we will have to deal with his butt squirting water and chunks. Everytime I got him cleaned up, a diaper freshly on and him covered up in bed, he would go again. Only a little. This whole process took 9 hours.
Two doses of morphine hoping to slow the gut and ease his pain, two doses of ativan hoping to knock him out, two doses of benedryl hoping for the same, and one dose of Motrin just to start things out and none of it even seemed to take effect. I guess it is a good thing we will go in Friday as my morphine supply is almost gone and it is obvious we still need it.
Samuel is sleeping as well he should be. I hope he sleeps until noon. The day is ruined anyway. I just cannot even believe it. Yesterday started out SO well too. Now his butt looks like a burn victim again. I did manage to get him on the toilet a lot. And since stuff just comes out whenever, he pooped in it a lot. That was really good. But today, the mound of diapers is stacked three feet tall. Like everything else around here....
9/18/05
I need a break, but there isn't one.
Don't get me wrong, there are a lot of things "broken," but the kind of break I am looking for is one where you push a button and make it all go away. Like mute on your remote, you push it, all sound disappears. I want all the painful screaming to disappear. Is 24 hours of silence too much to ask for? I would like to hear myself think. Daily there is a race goin on inside my head. A race of thoughts, to do lists, and a lot of things that come to the fore front of my mind for a second and are then lost in the screaming around me. I never know what day it is, or where I left the last glass of water I poured myself. I should write my to do list down but when I am near paper, I forget. I want 24 hours alone with my own thoughts, to sort them out, to sort this ALL out.
I need a break, but there isn't one.
When does all the suffering finally stop? When do we exit this Black Hole we are living in? When does the torment that has taken place over the last 17 months end? When does the roller coaster stop?
I remember back in the days of amusement parks and childhood, I never wanted the roller coaster to end. And it always did, too early. Now, I would give anything to get off and it just keeps going and going and going, like the Energizer Bunny. You see the station, you slow down, you feel hopeful, but then someone kicks it into high gear and you are off again. The screaming, the flailing of arms, the feeling like you might really throw up this time from it all. When do we get off? Do we ever get off?
I need a break, but there isn't one.
You would think that at night, when your kids go to bed, then you would have a break. But no, by then, you are so tired, wired, stressed out, and pissed off at it all, there is no relaxation. And unless a lot of drugs are involved, there is no sleep for the tormented. He wakes still, several times a night. He cries. He ONLY wants mama. I go to bed, I hear screaming, I wake up to screaming, I go through the entire day, with screaming. I want to scream. I want to kick the walls, I want to drive it away with my fists. But none of it helps. I wake up to a new day, but it is the same day, over and over again. It might start off well, but it ends the same. Screaming, torture and lots and lots of begging for it all to end. Both by him to me, and by me to God. When does it end? Are we the forgotten ones tonight? Another sleepless night is before us, I feel it. One word sums it all up, ridiculous!
I need a break, but there isn't one.
No one should have to work under these circumstances. It is cruelly unfair to have a child who needs you so much and not be able to make ends meet. I already have a full time job, the baby who seems to need me every five minutes today I cannot believe I am living through this. I cannot believe all we have done, and all we still have to do. I do more than a person should have to in one day and it still is not enough. It seems a futile struggle to keep everything together. I feel like I get up each morning, take a deep breathe, dive into the pool and swim to the other end as fast as I can because I cannot take another breath until I reach the other end. I get there, and I am gasping. I get there, and nothing has changed. I need two or three of me to share the burden. I think of swimming laps often because I used to do this exact thing, dive in, swim 25 meters, under water, no breath, for several laps at the beginning of swim practice in high school. Back then, I thought it was fun, invigorating and a challenge to see how many I could do. I always did it first thing because you needed to do it when you were not physically tired. To date, I swim more laps now than I ever did then. I don't find them fun or invigorating. Challenging, yes. And I don't always get to do them with a full nights rest. Makes it so much more difficult.
I need a break, but there isn't one.
There is no procrastination in this household. Procrastination only means you will stay up later getting it done. And there is a lot to do. Every day. I hear people complain about their lives every day. Do they not realize that most of their problems stem from the choices they made? Many can change their lives at any time, they just choose not to. No one would choose what we have endured. No one can ever plan for cancer to strike. Most would never believe it had we not the pictures to show for it. I make choices every day, choices to try to make things better for everyone. Choices that don't always pan out, but not due to poor planning, or because I lacked the ability to see what was needed at the time, vs frivolous at the time. Choices that don't always work because no matter what, there are some things that you cannot always win against, poison induced ruined body parts being one of them. Or so it seems today. This is 6 weeks past, and in some ways, it feels like very little progress has been made.
I need a break, but there isn't one.
When does my heart get a break, a chance to recover? The thoughts of all we have been through in the past 17 months only scratch the surface of my thoughts The nightmare this has been is so overwhelming that it needs to be stomped out as suddenly as it surfaced. Some day, I will have to rectify this. How many years from now will that be?
I need a break, but there isn't one.
I just want it all to stop. I want to hear my name called only for good things, not painful things. I want by baby to stop asking me to help him when I obviously have tried everything, and cannot. This baby told me that I am his best friend. He knows all to well who takes care of him and when I say 24/7, I mean literally that. How much should a child have to bear? How much must a mother witness?
I need a break, but there isn't one. The torture continues.....Samuel needs a break. We all do.
9/16/05
Everytime I update that things are well, they turn to crap, literally! The last two days have just been awful again. Awful in a different way. Apparently too much solid food caused Samuel to have poop that was also too solid. Liquid diet has been great and it has been nice to see him want to eat again, but obviously we are going to have to limit things still. As far as I could tell, it was just another soft turd, but with his anus not being of normal size, it made for an incredibly awful few days of trying to get something out that seemed too big for the opening. So about every ten minutes he would get a little out but it was horribly painful and the amount of wiping we had to do pretty much ruined any progress we made on his butt skin. I gain, tried sitting him on the toilet to see if he could just push it out, but nothing. It came out in small bits. I ended up giving him aloe vera and olive oil to help get it out. Two nights ago, we were up almost all night. I finally gave him morphine and ativan to knock him out so that we could get some rest. Yesterday was just a fog. I ended up going to bed at 8pm. Anyone who knows me knows that that is very odd. I am a night person!
Thankfully, Samuel slept through the night and has had a 12 hour break now from pooping. I hope this will not mean bad news for later. But at least his butt has had a nice chance to heal. The ups and downs of this roller coaster are really taking a toll here. I remember earlier this year Monika saying she just wanted there to come a day when Samuel did not hurt anymore. When will that day come? I hope soon because I feel literally numb to everything going on outside the walls of my house right now.
I did call Oncology to make our appt. They suggested today, which I vetoed. Now I am so thankful I did. I need today to rest. I cannot imagine piling into the car and doing that after these last few days. So, it has been set for next Friday. I told the scheduler that a "quick visit with the Onc" was a 5-6 hour day for us with a kid who can poop 30 times a day and she said, "I know, I know." I stopped her in her tracks, "No, you don't know. You have NO idea." I am tired of people who think they have a clue what this is like and play it off like it is nothing. The fact is, unless you have lived it, you don't know. Maybe you can get it if you imagine the worst case of diarrhea you have ever had in which you went 30 times a day, and that includes night. And you could not take care of your butt so someone else had to do it. And your butt was so raw that even putting your clothes on hurt. Oh, and you had trouble sitting down. Here is the clincher. It lasted weeks, not a day, or a few days. Weeks. We don't know when or how it will end. While this is not the worst thing we have dealt with, it comes after a long string of crises and is just another nail in the coffin of crap.
Monika assures me that by 8 weeks post op, things should be a lot better again. That is just three more weeks. Great. Three more weeks of this. Currently, Samuel is jumping on the couch and running around like a nut. The sleep sure did him good. Right up until he poops again.... So tired of the shrieking!
Please keep praying.
9/12/05
Daniel had a nice birthday! He even caught another fish, not the one we were all wanting, but he was pretty excited anyway. They had a nice day but I don't think he slept much because by the eve, boy was he grouchy! We had a small party and I sent him to bed early. Everyone seemed to enjoy opening presents since they all helped Daniel. Fall is upon us with Daniel's birthday marking the first of many to come. Next is Kaysha's, then Mark's, then Mark's parents, niece and my mom. Oh, then Jesus. What a line up! The months from Sept to Dec seem to fly by in all the craziness. We are enjoying the nice weather change and cooling off.
Today marks one month post op for Samuel. Monika was right. Today, he got up, let me wipe his butt without much protesting and diaper flinging. Then he even got into the tub with me and enjoyed playing for the first time since we left. It was really nice to see him get in and realize that it did not hurt. His butt looks pretty good all things considered but by the eve, it is getting tender from being cleaned and having cream applied. But the poops are coming between larger intervals and he is peeing a lot more which is a great sign that water is being absorbed. It has almost been a relief to only feed him in the day and not over night. No beeping food pumps, no late night mixing of food, no tube coming accidentally undone and feeding his bed rather than him. He can actually wake up in the morning and get out of bed without waiting for one of us to unhook him, and dump his air bag. That used to be the way it worked. He has not quite realized that he is free yet so I usually have to reassure him he can get up if I cannot come right away to get his diaper off. Now, he can come to me. It is nice and feels more "normal".
His energy has been coming back slowly but he still sleeps a lot. Monika reassures me that he will need 8 weeks of recovery before that comes back. I will be happy to see him back to normal. No one misses the air bag, least of all him. He just doesn't even ask about it, think about it, nothing. I thought I would be checking it all the time, but I don't. The only time I think about it is if he is jumping on the furniture, or in the bed. I wonder if the scar bothers him with clothing but he doesn't seem to mind in the least. Each day, he plays a little more, seems a bit happier and is eating pretty well too. Still not craving chips, now we are on to meat. Salty meat, but meat nonetheless. That is a switch.
Still haven't called Oncology back. Just NOT looking forward to that at all. Not the visit with the Onc, but the trip in, the long drive, the waiting, the POOPING!!!!!!!!!!!!! That. He does just great until he poops. And while today has been better, I just don't have enough "good" days under me to feel like we can go and things will be okay. No, right now, I know it will totally SUCK. And just thinking about it pisses me off. But I know we have to maintain the port so I should probably call tomorrow and try to put it off to early next week. I hate that place and I just haven't been away from there long enough yet to have a good attitude about any of it. Mark and I had another conversation about where to go from here as far as Samuel and chemo go. I am sure it will be another interesting conversation with the Onc and if he thought I was adamant and bull headed before, wait until now. I did not know how I would feel about things after the surgery, but this past month have really made things hit home as to how to proceed. I think it was mainly the surgeon saying that this just HAS to be Samuel's LAST surgery for a long time, if not forever. I will remember those words for years and resent anyone who causes him to need another surgery. This has always seemed like the last big thing for us. I hope and pray it is. It is time to pick up the pieces of our lives and move on as best we can toward whatever normal will be for us.
Life is good as long as we are home. That puts everything else in perspective. All needs and wants aside, we are home and things are under control, OUR control. It is time to find peace.
Thank you so much for your notes, prayers and those who sent special gifts to Daniel. We are continuously thankful and overwhelmed by your concern and generosity. Much love.
9/9/05
Happy Birthday to Daniel! He is 7 today. And boy is he excited! He and Mark left early to go fishing with Mark's dad in tow. They are all hoping to catch the king of the kings! Mark brought home a 12 pound silver a few days ago. Well, I hope Daniel has a good time and catches something he can be proud of today too. Kaysha and I are making his cake this morning and having Mark's parents and the cousins over later tonight for a small quick gathering. Things are really tight around here but personally, I would rather do something fun than get a bunch of crap, so I hope to instill this in Daniel and all the kids someday. Memories are worth so much more than "stuff." And hey, they might bring home dinner. Thank you Kerry for the card, we all loved it! Daniel saw it first thing today. Thank you to whomever sent Daniel the Target gift card, no name in the from box. You are very kind.
How is Samuel? Well, things have improved significantly since my last update. I guess the way to get things to change is to whine about them on the net and get a lot of people to pray. Kind of like complaining about the problem makes it go away. Well, it has not completely disappeared but things have gotten a lot better for everyone.
The major thing for today is that Samuel has slept through the night. Without drugs and without pooping. At least not that I know of. There may be a surprise in there, but if so, he did not notice it or it did not bother him enough to wake. The starving him after 4pm has worked out rather well. I will still allow him to eat by mouth if he wants to since he really does not eat all that much and interestingly enough, he is choosing foods that will help absorb moisture on his own. Things like toast and crackers. The crackers are not new, but toast is. And he has not asked for chips since coming home. That is a real switch since he used to get up and ask for chips. I guess the salt issue is under control now finally. By the second day of not feeding him over night, he stopped pooping every ten minutes, and every hour and I swear went a few hours in between. And then his butt improved a lot just by not being abused. It still hurts him and he still has a fit when being changed. By that I mean, you undo the diaper and grab his hands because he will grab anything that even looks like it could be used as a wipe and throw it as far as he can. So unless you want poop everywhere, you have to be fast. We were doing the peri bottle rinse for awhile but he got wise to that and will fling anything you use to soak up the water. I have been doing more bedding laundry than anything it seems. I have known for the last year that feeding someone while they are sleeping is NOT natural. IN fact, you are supposed to fast at night to not only allow the gut to rest but also to allow your body to clean up dead and bad cells. That is why breakfast is called breakfast, because you break the fast. Well, suddenly it seems that things have normalized a lot for Samuel since resuming a normal eating schedule. I don't know if it is this alone or maybe some diet modifications we have done but it has worked. Today is four weeks post op for Samuel and like Monika said, "about a month." Maybe we have reached the magic number. Whatever, we will take it. Right now, I am just really happy he is sleeping so comfortably. Yesterday we were up with him three times. The day before that, I was up four times and he was so miserable at 4am that we just ended up being up for the day. I gave him morphine that day and even that did not seem to help. I turned on his TV to try to distract him from the pain and wouldn't you know, the power went out. Then A.D. started crying, and he was crying and that was the day Mark left early for fishing. I just wanted to pull the covers up over my head and ignore it all! A lot of you have asked how I get so many things done around here, well if you pull a day that starts at 4am and ends at midnight, you can imagine how much you can get done. And of course, I love what I do "for a living" so that helps keep me going too. When Samuel is better, we get even more done.
I hope to get some happy pics of Samuel tonight at the "party." He is still not 100%. He tires easily and his mood is probably equal to how much he is pooping so better now. Luckily, his butt does not seem to bother him unless he poops. He is now in 100% cloth diapers. I was putting paper on him at night to help with extra pee when night feeding but a few days ago, I realized that even the natural diapers seemed to be bothering him. But now that he is not being fed at night, peeing is not an issue. A "Samuel's Soaker" can pretty much handle anything except 500-700cc's overnight. Of course all the night feeding has to be made up in the day so that has changed things up a bit for me, but the exchange is well worth it.
The barrier cream which we found to work best is Calmoseptine. Just FYI. A lot of people recommended different things such as triple antibiotic cream, etc and none of these worked. Mostly because they did not stick. Calmo is mainly zinc oxide and is a thick and I mean thick paste that you can hardly get off once on. I think that has been the key. Other things we tried were just absorbed into a diaper, or seemed to have a chemical reaction with a paper diaper that only made things worse. Just something to keep in mind and we were only using "natural" diapers. I can only imagine the reaction that creams and Pampers would have. It heals better than anything else. We ran out and it was very noticeable, the difference. It is an OTC but obtainable in the pharmacy. You have to ask, and in most cases, have them order it. Or you can buy it online, or ebay. But, IMO, these creams work differently with different skin types because things people swore worked well for them, did not for us. Aloe literally burned Samuel, and I mean aloe from the leaf, not store bought. Lavender oil burned him too. Two things you would think would be great, weren't. Thankfully, we did not have to spend a lot of money on products that did not work to find one that did.
Well, that is pretty much it. No Oncology appt on the books because I have not called them. Probably need to today, but just did not even want to think about a road trip a few days ago. Really, I still don't, but there is nowhere else to access his port. No home health care offered by Seattle Children's which sucks! And seems stupid.
Off to make cake! Then back to business as usual until later. Enjoy the day. Much love and more thanks for your prayers for Samuel.
9/5/05
I haven't updated in the last few days because nothing much has changed. Posting update after update about how miserable Samuel is.depressing to everyone. So here is our last week in synopsis.
If you think you are sick of changing poopy diapers, you should spend a day here. Unless you do daycare for 10 kids who poop 2-3 times each in an 8 hour period, you just cannot imagine. And it would not be even that bad if it was as simple as a diaper change. No, the minute Samuel poops, he begins screaming, begging and asking you not to wipe. We can always tell he goes because he will scream things like, "Yikes! No, please! Stop! Mama, it hurts, I don't want to wipe." And when A.D. poops, it is just TOO much. Every time we think we have it figured out, things change.
We haven't been getting much sleep the last few nights since he was waking every two hours or so to poop. It seemed like it was okay to feed him through the night but now has changed to NOT okay and only adding insult to injury. I have figured that after about 6 hours past the meal, he will finally stop pooping. So last night, I stopped feeding him at 5pm and by 11pm, he was done pooping. He made it until 5am, which was nice! So I guess we will just start starving him after 5pm and not feeding him until about 5am.
His butt has improved and seems to be at the plateau mark. Not quite healed but not overly bad either. The part that looked like a bad burn healed up, and as burns do, the skin peeled off. So the new skin is now being attacked by poop. And I guess the sting of his outer skin has worn off enough for him to notice his anus. It still "looks" great, but after sitting him on the toilet yesterday and letting him just drip for awhile, it was obvious that it hurts coming out.
Samuel still has not fully recovered from this surgery. He is still really tired and with his butt hurting all the time, his spirit is just sad and disgusted. I feel fairly disgusted too because almost every effort I have made has only gotten us to the "just so so" state we are in now. I really hoped and prayed that at least the outside of his butt would have been healed by now, but it isn't. I guess, what do I expect if you crap on it 20 times a day, right? Ugh! I am a problem solver and will not settle for just "so so" in anything that I do, so it is driving me crazy. And I am just worn out from listening to him begging for the pain and the poop to stop.
Yesterday, Kaysha and Daniel went to Mark's parents to spend the night. Samuel begged to go. Then just after we got there, he pooped, came unglued and begged to go back home. He refused to play and finally just fell asleep in my arms. The only time he does that has been when he was really sick, meaning hospital, and holding a sleeping baby Samuel will forever remind me of the ICU when my spirit was dying to hold him and all he did was cry and beg to be put back in bed. No, things are just not right here. Samuel is about 3.5 weeks post op now so it is really early and I should be satisfied with the progress that we have made, but I am not. If he had some control of his sphincter, it would make all the difference, but he does not, so anything that is watery just oozes out whenever it wants to.
It is amazing that we can get anything done around here. I am just so thankful right now that at least one of our products is fully sewn elsewhere so that I can just focus on one part of the creation. I am also thankful to all those who helped us be able to get the fabric for this. While in the hospital, I was trying to figure out what I could actually do when I got home, knowing it would be like this. It has been beyond difficult to go upstairs and sew. In fact, I have found that when Samuel naps here, I miss him. I find it hard to concentrate on doing anything else but wondering if he is okay. I guess that my spirit knows he is not fully okay yet and I just worry when he is not within my sight. I have a baby monitor, but it makes no difference, I still miss him.
And topping off the week, the little sewing I did do mangled my commercial serger making an immediate run to the repair shop necessary. Not what we needed financially right now. Of course, machines need to be maintained and this one has been home for two years now needing no repair so I guess if you average out the cost over two years, it was about average. But broken parts are not average and when your main machine does not sew at all, you know you have problems. My machines always come to feel like old friends since I spend a lot of time with them and get a lot of thinking done. So seeing one of them leave seems a bit sad. I am always happy when they come back home. Corny, I know! My favorite machine died beyond repair last year when Samuel was in the hospital. We dropped it off and never picked it up. Seems like when things go to hell, nothing is left out.
Well, oncology remembered us. I guess my Onc either reads the updates, or is just really intelligent. I got a message Friday that we need to come in for a "quick visit and labs sometime in the next few weeks." We are going to need to go in before the 19th to have the port flushed so I guess my hand is forced. I notice no mention of chemo was made so I imagine that our Onc will have the impression that we are not going there right now. I am not looking forward to any road trip, especially one that far when we cannot even drive ten miles away without incident. When you feel like crap, you want to be home. Samuel showed us this yesterday. I imagine it will be thrilling to spend 5-6 hours away in an environment that I hate when Samuel is miserable so much of the time.
I pray it all ends soon because right now, my life is consumed with changing diapers and tending to a very sore butt. I have very little clue about what is going on in the world. I sat down last night and watched the hurricane news for the first time. Before, that I have been catching it sporadically. It is just awful and I cannot even imagine it. And I guess my mind does not want me to imagine it because all that I am currently hearing is "I don't want to wipe." If I had a dollar for every time I have heard that, I would not need to work at all. I guess when your child is in pain every day and miserable all of the time, you just have no room for anything else in your head by trying to make it better. I feel a bit selfish when there is so much suffering going on in the world, but I just feel numb to everything else outside these walls.
Daniel's birthday is Friday. Last year today, we were preparing for the VA shunt surgery. Seems like it has been longer than a year. I looked through some of the old pictures of last year and journal entries from then and Samuel came over to see. He did not even recognize himself in a lot of the pictures. I don't know what we will be doing for Daniel's birthday. I am thinking that he and Mark can go do something fun for the afternoon, just the two of them. Other than that, there are no plans for a party or going anywhere as a family so a fun afternoon will have to suffice. It is so depressing.
Well, I have to go "wipe" so this is it for now. Please keep praying for Samuel. Much love.
8/30/05
It is morning and half the family is up. Samuel is still in bed and I am wondering what kind of day he will have today. Yesterday, we celebrated him making the first poop we were able to dump in the toilet as a solid turd! But then, it changed over very quickly to a more frequent and runny poop again which irritated his butt more and ruined the rest of his day. I ended up giving him morphine last night both to slow down the gut and to get him off to sleep comfortably. He was not able to get to sleep well until after 1am which was the last time I changed his diaper. As I have told a few people yesterday, he has come a long way in a very short amount of time, but we still have a ways to go. Thankfully we are doing better weeks before expected, if not months. Of course, if I had my way, it would have all been cleared up by now and his colon miraculously grown back, you know....
Some have asked when we will be starting chemo again. Well, as of right now, we have no Onc appt anytime soon. That doesn't mean they might now call today and want to set a date but I think I have the scheduler now trained to NOT just call and leave a time. I think she figured out that every time she does that, I just call and tell them it won't work and needs to be changed. Now they call and ask me when I would like to come to which my first answer is "never." Well, we will need to go in sometime in mid September due to his port. It needs to be accessed and at least flushed monthly. And it is obvious that there will need to be another "meeting" with the Onc regarding what we intend to do from here. Samuel has not been off all chemo for about 5 weeks now. This tends to make most Oncs not to mention parents worried about relapse. In all honesty, being off chemo always makes me happy, not worried. We do things to help fight cancer daily for Samuel that are non-toxic and have now become a lifestyle. My friend Sandy, keeps sending me jewels to ponder. She is obviously on the right track and destined to help people in the alternative medical profession.
We have been talking about how amazingly well Samuel has been doing since we changed his diet and she sends me this.
It is amazing only in that we have been brainwashed into thinking there
is no cure~no help~we are at the mercy of modern medicine. The healing
that Samuel has experienced is not unique to his case. It is
universal. God made this food healing to our bodies. He designed it
perfectly to keep our bodies nourished. It is us who hurt ourselves
and want a quick pill to fix it. What God's food did for Samuel will
work for everyone! It shouldn't be anything amazing~it should be
common sense! Everyone should know about it. God heals in many ways.
Yes, He can go "poof" and heal us but I feel that His greatest healing
powers are in the food he created for us. If we don't change and
consume these foods, we are just continuing to hurt ourselves and are
undoing the healing that He gave us. Samuel is just living proof that
God is genius in his design!
And along those lines, in thinking of the future chemo and I am sure that everyone knows my thoughts on where to go from here, she sends me this....
A chemo deficiency didn't cause the leukemia :o)
Boy, was that a gem for yesterday. Pretty much hits the nail on the head for me. I have read over and over parents telling others how cancer, especially leukemia is a disease of the immune system and IT IS. However, they feel the solution is ruining the immune system with chemo, not to mention the rest of the body. To try to strengthen or build up a "broken" immune system would be wrong. Okay, well then, lets just ruin it all and cripple it forever then so it has no chance of fighting anything.
Here is a great example. Our surgeon tells us that even with a simple procedure like opening up Samuel's anus a few months back, since he has been on chemo, his immune system is not normal and he "could" get an infection. He would need to be on antibiotics for a few days afterwards. Well, I beg to differ. Samuel currently seems to have an immune system better than the rest of us. His healing time surpass all expectations. All protocols for ALL require that kids take an antibiotic two days a week, just in case...... Just another thing to ruin the gut for no reason. We have never bothered to give it, ever since coming home a year ago. Instead we chose probiotics which heal the gut and aid in killing any bacteria coming in. Oh, and lets not forget the garlic treatment. After a year of this we are thoroughly convinced that we are on the right track for Samuel. So when I read about people thinking that doing things to "help" build up the immune system are "wrong," I just shake my head in amazement at such "logic." Our bodies take on cancer every day. A good immune system will kill it. A weakened system will allow it to grow. An immune system ruined by chemo is at even more risk. I worry about relapse MORE when Samuel is on chemo, than off. Anything that drops his counts is leaving him open to cancer. Chemo does not kill cells that are not active so if there are any residual cells dormant, it is of no use to us anyway. Better his body kill them. All WBC's are awakened after surgery as the body needs every resource to heal. If there are dormant cells, the chances of them coming back in full force is greatest after surgery when the body is targeting the healing to one area. Nutrition is so important right now. The last thing I want to do is add more chemo to ruin the good thing we have going. We did our time on the chemo roller coaster. Day after day in an ICU, no change, people not knowing what was going on, organs being ruined, no one having an explanation for the "newest" thing. Suffering beyond belief. Feeling numb to the outside world. Well, here is an explanation in one word. CHEMO. It is poison. The majority of cancer patients die from chemo induced problems, not the cancer. We were lucky I guess, we figured that out early. I read journal after journal of kids getting cancer, doing chemo, then remission, then relapse, then last ditch effort chemo, which may be experimental, and they all know it won't prolong their life. And the interesting thing is, that so many kids can go through YEARS of chemo with no immediate life altering problems such as we experienced. But they do eventually die after living life on chemo for years. What kind of life is that?
And, I often wonder, why Samuel? Why, all the things that happened? I hope and pray that all the misery happened because Samuel will make a difference someday in how cancer is treated. I hope and pray it is because God knows that I won't shut my mouth about the poison and the brainwashing about how "GOOD" the treatments are these days. Yes, they are great, just look at Samuel's scars. Count up his surgeries to repair the damage of less than ONE MONTH of chemo. It has taken 16 months to rectify surgically and we don't even know if we are done with surgeries
God's medicine does not hurt. Chemo is not from God. I bet if someone proposed chemo as punishment for crimes, it would be considered too barbaric for even the worst of murderers.
Where do we go from here? Time will tell. Hug your babies today and enjoy every moment you don't have to make these choices. Life can change in a split second. My goal is to not regret that we did not enjoy each day, even if it is only in a small way. Samuel is still in bed and it is now after 9am. I pray his day is happy. Yesterday, he said he was sad all day.
We thank you for your nodes, your support, and your love! It helps more than you could ever know. Much love.
