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.
