1/25/05
We are home, which is good! The test showed NOTHING. No blockage, which is good, but unfortunately still leaves questions. So we don't know where we go from here. Something is still wrong and at this point we are waiting on the surgeons to get the final report.
I am so tired, physically, mentally, everything. I hope Oncology is smart enough to NOT call me today. All that is on hold until we know more. I am going to bed because I want to forget this whole sucky day happened, in fact forget this whole last week. The only problem is, that I will wake up and remember again.
1/24/05pm
We are still home tonight....I say this because it was looking like we would need to go in and be admitted tonight if Samuel's body did not start using the fluids I was giving him. He went from 6am to 5pm without peeing but the poop was pouring out again. I was getting concerned and even moreso after getting a call from Radiology telling me he had to be without food or drink after 1am until the study done at 9:30am. That was WAY too long even without him puking occasionally. I spent the day calling back and forth with the NP for surgery trying to work out the details. Basically they told me we could bring him into the ER tonight, if he got bad, or hope all is okay and keep the time. I ended up calling the Onc Clinic and scheduling Samuel to be there at 8am to have his port accessed and then hooked up to IV fluids for a few hours before and during the study. The Charge Nurse had to call the Onc who was attending the clinic patients, who was the one who originally got us admitted last week and apparently HE knows I am not playing around now because about five minutes later I got a call back that that was OKAY. This took half of the afternoon. The NP from surgery was asking me 20 questions about what I was going to do if Samuel did not get up from his nap and pee. He got over 20oz of fluids while he slept, which was over 4 hours, I told her it HAD to go somewhere, either it will come out as pee, poop or puke but we will know right away what to do. I am really glad he woke up with a huge wet diaper, as well as poop....the ER sucks. So he has not puked since this morning at 6am and has been pretty happy this afternoon after getting up from his nap. He was able to tolerate cultured Oat Milk with all his vitamins/etc in it this afternoon so I am quite pleased knowing his body got a little boost.
Well apparently the Surgeon decided that he can use the abdominal CT done last August to see what Samuel's anatomy is like, which none of us, that being Mark, me, my Mom and Kristina think is right. Simply because the butt blow out was in November and things could have changed quite a lot since then. I guess I need to print out my journal from that week and let them read just how severe that was. Maybe then they will get it.
My wonderful friend, Tracy in VA told me I should just type out a synopsis of Samuel's history and give it to any new doc or caregiver to read before approaching us. This is a WONDERFUL idea. Then they might know all we have been through. There is always something that gets left out of the equation. For example, when the surgeon came in to meet Samuel and I last Wednesday night, he asked me to see his labs and when he noticed his WBC being 2.2 he asked if his WBC was always that low. I said, "well he is ALL," and he said, "I am sorry, I was not aware..." Don't you think that would be one of the first things they would be told? Now I guess Samuel does not have the tell tale sign of a cancer patient since he has hair. I think I don't have to mention how RARE that is. But at any rate, Tracy's idea is a good one and she is sure we would be treated a lot differently. I have to find time to do that. Unfortunately, with tomorrow's scan, if they see a blockage, we will more than likely be admitted. I confirmed this today with the NP. Boy do I hate packing. We just got home! I spent yesterday trying to be "normal." You know, cook, clean and try to get a handle on the house I haven't seen in five days. We were all wore out, my head seemed to be in a fog. I feel better today, but not normal by any means. It is hard to imagine going back in to stay tomorrow. The only good I can see thus far, is hopefully they will know what to do to help Samuel. AND Julie is working Wed-Fri so I can at least get someone great! I mean great!
There is so much to be said for getting a tenacious nurse. Or just a nurse you get along with that knows you well. All but one day this last inpatient stay we had great nurses. The one day we did now was when I was trying to get Samuel to be able to eat and never getting answers. Waiting hours and doing things myself. I swear I asked her to do something and she either forgot or did not bother. I guess I need to get friendlier with the Charge Nurses and let them know who I like or don't like. Fortunately, the "like" list is longer then the "don't" for that particular unit.
Want to touch on the horrible treatment we got from the attending Onc last week. I was absolutely FINE with Oncology handling Samuel's case until I met her. She came in and basically repeated the orders from the Surgeons to me which was fine, but when I asked about how we were going to handle Samuel's WBC being 2.2 and looking forward to a surgery, her reply was that she did not want to discuss it at that time. That rubbed me wrong right off the bat but I let it go. This was the day I signed papers for Samuel to go to the OR to have his stoma examined and dilated as well as a barium test done. The barium test consisted of them injecting dye into his stoma and then watching it travel up. They came in in the morning and told me they wanted to do it in the room, but I let them know that that WAS NOT a good idea without sedation of some sort. It was way too sore. Just taking the bag off was torture. So their plan was a good one.
Later that day, around 3pm, a transporter comes to get us for what I thought was the OR stuff. Our RN did not even know anyone was coming up. I asked how long it was going to take because I figured I could shower and eat while he was gone. The transporter said 45 minutes. I was surprised. I asked if that counted time in recovery too. She told me that this was to be done in Radioloty and was scheduled as an emergency thing. I was confused but put Samuel into the new pouch I made him and carried him down. Once there, the assistant for the procedure told me that they were going to inject dye into his stoma and then x-ray it for 45 minutes. I couldn't believe it and told her that this was supposed to be done in the OR. She went to check who ordered it at my request and found it to be the Onc. I was livid. I refused the scan and headed back to the room. There was NO WAY I was going to subject Samuel to that cruelty without sedation. Plus, he is strong now and it would have taken several of us to hold him down. No! He has suffered enough. So I get back to the room and have my RN page the Onc and tell her to get to my room NOW. It was amazing that she could make it there in 5 minutes. Even more amazing was she was just as mad as I was. Demanding to know why I declined this. We had quite the shouting match and I asked her why she, an Onc, woudl order a test without giving us notice, etc. Further, it was to be done under general. She claimed that surgery changed their mind and wanted this done first to save him the anesthesia. So, fine, I believed her answer and had the RN then page surgery and tell them to get their butts in the room. Unfortunately the surgeon did not come in until 6pm that night. When he did, we had a long and I mean a 30 minute rational sit down conversation about Samuel and our options, what they think is wrong, etc. When I asked about the test, he stated that the Onc called him while in surgery and wanted to get this done and he told her that while it was a great test, Samuel would not be able to tolerate it so just let them do it in the OR. When he said this, I was really mad because she flat out lied to me. Her plan backfired I guess and she was pissed. She actually left my room telling me that since "I" declined the test, Samuel may not get back into the line for a few days so he will have to stay on NG suction and starve. Oh, and if he gets a fever, they will start IV ABX. Basically, laying it back on me, like "I" wasn't there to get him fixed. I called the Social Worker and asked how I could get rid of her. He said I was over a barrel. I asked him if she was actually an oncologist and he said yes. I said it was hard to tell given the fact that she would allow Samuel to get an infection and think that was fine. We had a long conversation that night and he said he would get the test straightened out, etc. Of course this was BEFORE I knew she lied to me. The next day, the Onc Resident came in to see Samuel. I thought I would feel better after sleeping on it, but I did not. I was mader. I asked her why she was even there. We were not there for Onc so she just needed to leave. She told me that ONc stays on the case since they see the patient as a "whole person". I ROFL!!! I told her that that Onc saw us as lab rats, which we are not and I don't want to see any of them again, they are fired. She was taken aback as you might imagine. She was doing a quick evaluation of Samuel while we were having this conversation and asked me if Samuel had a bag (air bag) on. Um, no he is pooping all over the bed!!! I just looked at her and said "GET OUT!" She never came back alone again. I told my IRL friend Carrie that today and she commented that if I told her to "GET OUT!" she would run. I LOL because Carrie is a lot bigger than me...... After that, I demanded that Surgery take over as our primary service and they agreed. But when they called the Onc to have her relinquish us, she refused. And they did not want to step on any toes, so they did not push it. I was livid. Later, after Samuel's prodecure, the one where we were given the unfortunate news that his anatomy may not be present or usable, this Onc shows up at 7pm. On the same day the Surgeon told us that they were taking over our case because he was tired of havingt the Onc call HIM to find out what HE was doing with us. It iwas his job to care fur us and she was just a middle man that NO ONE wanted.
It is strange to have a doc come so late, usually after about 6pm it is pretty safe to assume no one will come round. But she walked in, and my back was to her, but I saw her out of the corner of my eye. She told me who she was, as if I would have forgotten.....I think now that our Onc may have told her I don't see well so she LMK it was her. How nice. She came in to tell me she had had a long conversation with our Onc and HE wanted her to stay with us. I guess I wasn't clear enough when I told her that it was find for them to CONSULT, but I did not wan them as primary. I told her point blank that I was very pissed off at Oncology for NOT listening to me for the last two months and furthermore, on Tuesday the Onc on call in the clinic looked at Samuel's x-ray and said it looked fine. Later Surgery told me they definitely can look at it and KNOW there is a problem. I did not want to talk to them about anything but Oncology which was NOT an issue right now because Samuel is getting NO MORE chemo until we know our options. She told me that Surgery could tell HER OUR options and then she would lay them out to me. I told her,"No, I don't think so, I am the parent, I will decide." She was again mad that I dare want to make a decision about Samuel. The Surgeon told us point blank that same day, "we will consult with Oncology, get their opinion, but we will do whatever YOU want us to do." So I don't know where she thought she got off. I guess she must be used to walking all over parents. I told her that Surgery can discuss with OUR Onc any future plans but she was out of it. Her reply...."I have been an Oncologist a lot longer than Dr. so and so." Oh, I feel so much sympathy for anyone who has to deal with her. The brought up TPN if Samuel's blockage did not seem to get well enough for him to eat, and just when she said TPN, I said "NO!" So that ticked her off. It is amazing how some people can turn you off to everything they suggest while another can come in and suggest the very same thing, but it is the way it is done that changes everything, including your mind. I am so done with a liar. I hate people who lie, especially adults. She wanted to talk about the huge gap in his treatment thus far and I told her that since they were unable to offer a prognosis to us at this point and it was obvious that even THEY don't know much about chemo and cancer, that I did not want to hear any more about chemo at that point. If it had not been for chemo, we would not be doing this now. The Surgeon asked if Samuel had had Inflamatory Bowel Disease prior to losing his colon and said that is was basically unheard of for someone's butthole to heal closed. I told him that Samuel was PERFECT and HEALTHY proir to Leukemia and it was the CHEMO that has ravanged his body.
Unfortunately the Onc showed up the next day and I called the Social Workder again and told him that I simply don't understand why she doesn't bow out. I would have lad a lot more respect for her if she had done so when asked. She came in the next day trying to schedule things she did not even know about. She seemed to think we were staying indefinitely. The bad thing is, getting admitted, while time consuming takes a lot less time than being released. I asked the Social Worder to please ask her to remove herself and he said he would, but on Saturday, they were STILL our main service. The surgeon peeked in to LMK that the head surgeon did not want us to go home. I told him that we HAD to go, they were not doing anything fur us, I have managed WAY worse on my own anyway. He made some calls and finally got back to Julie and LMK that we were okay to go. The only problem was that then the Onc had to do the release. Funny how they demanded to be our primary service yet they could not bother to make rounds to us until well after 1pm. I am so glad we did not NEED anything from them. So Julie called them to see what was going on with our release and their response was, "oh, I thought they went home." HI! YOU are the primary team, we cannot go until we see you. What a mess! Reminds me of another hospital we were at previously!~ They finally get around and come in and let me just say that that same Onc was a completely different person. Had she been that way from the start, I would have never had a problem with her. I guess the Social workder told her I was filing a formal complaint against her. I guess I will work on that if we stay inpatient again. I am just glad to be rid of that! If we are admitted tomorrow, guess what the stipulation to signing the form will be? Oh, and MY Onc is back tomorrow and I hope he knows he will be getting an earful!
Thanks so much for yoru prayers for Samuel today, he definitely improved. Pelase pray that he gets the help he needs and we get some answers tomorrow. Pray that we can all handle another LONG day....and possibly another stay. Much love!
1/24/05am
Well, it is obvious that things are still not right. Samuel ate some "soft" food which he is allowed to eat earlier in the day yesterday and was throwing up by evening. He had been pretty happy all day. We were "instructed" to call if he starts puking again but figured since we would be going in today, we would see how the night went. We have stopped all soft foods and are back to full liquids but he woke up this morning to throw up again. It was mostly mucus today though which was clear so I wonder if his lungs are cleaning out from being intubated. We have poop, we have pee, and now he is happy again so we will see how the day goes.
The surgeons called today and cannot get him on for the barium study until tomorrow at 9am so it will be an early day for us. We just need to get through this one now. I am going to try to wrap things up with the purchases made on ebay last week and get them all out just in case we do not come home tomorrow. I am thinking I will pack a small bag again. He has something obstructing somewhere, and at this point, only a surgery of some sort will remedy it. I don't know if they will see it and want to keep him or what.
We want to get his gut hooked up if we can. Expecially since we were given that option now at least by the surgeons. But when his last study was done inpatient, I asked the surgeon to examine his butt and rectal area given the famous "butt explosion" so see if it was all normal. After the procedure was done, the surgeon came out and lookeed a bit subdued. He told us about the rectal exam first, not the stoma or study.
When Samuel lost his colon back at the end of 5/04, we were told he had ALL of his rectum, and a few inches of colon to hook up to. The hook up of his gut should have been straight forward. The surgeon said first that he has very little anus. We know that already because it all healed shut. We have said for months that the anatomy was not right. BUT, now he said he could only feel about two inches of rectum before hitting a "wall" and causing bleeding. NOT good news. He wanted to see the original OP report which I drug out since arriving home. I found this picture of the anatomy from the colon to the anus for referrence. Samuel's OP report says he lost everything from the cecum, appendix all the way to the descending colon. His colon was 2.5cm in diameter and had 1.5cm HOLES all over it where poop was just leaking out into his body. There is a tremendous amount of scar tissue all over his abdomen from the massive infection that was there. It seems stupid from reading that now that anyone would have ever considered a VP shunt. However, the colon was stapled at the sigmoid colon juncture which "should" leave him a pouch and hook up place. So then we ask, what happened to this anatomy? Has it since been destroyed by chemo? Or was it so full of scar tissue and adhesions that it has collapsed on itself and healed closed. We don't know. That is what the CT was supposed to find out. But this complicates things and we een dscussed a permanent stoma if there is not enough to work with. Please pray for the news we get this week to be good. This would be a terrible blow. Trying to work this all out anyway is going to be difficult.
I will write more tonight about our other news, etc. Thanks for ALL the kindness shown yesterday. I am so OVER the last post and rudeness below. I have a VERY thick skin as you might imagine. Much love to you today.
1/22/05
Well, we are home, the kids are in bed and I am still wired but feeling MUCH better. Samuel was thrilled to be leaving and the Onc came in as I was packing up with a completely different attitude, one I would have never had a problem with had she been this way from the start. Either Fred, the SW got somewhere with her last night or she was happy to see us go. The plan is to go back either Monday or at the latest Tuesday for another GI study and a CT of his rectal area to see what is left. I have read the OP report from the surgery and he SHOULD have enough left to hook up to without having to create a pouch. I don't know if when his anus healed shut, the rest of the tissue did too, but upon examination, there was only about two inches inside before hitting a "wall". This will affect our decision making process in a huge way. I pray that the remaining anatomy is not damaged in some unreapairable way. Samuel winding up with a premanent stoma would be something I don't even want to think of at this point.
Shortly before leaving the hospital, I got a note from someone on the yahoo group list that I want to share and respond to....
"I am so confused. To me it seems that all energy is being spent on declaring how stupid doctors and hospitals are - - so why are you even taking him to them?? I just don't understand.
If you feel like you know what is best, why do you even go?
I just don't understand. Never have I seen anyone make so much fun of the medical community but continue to go back for more. I've read all the updates for the last couple of months and I still don't understand.
Pam in GA."
After the last week of events, this was slightly annoying. After thinking about it on the way home the thought occured to me that there are probably people just now finding our story who wonder the same thing, or something along these lines. So I will respond and fill those who may be "confused" in.
First off, read the whole journal, not just the last few months. I don't recall ever "Making fun" of the medical community. I do not consider my situation nor the horrible situations of others stuck in this system humorous in any way. Anyone who thinks this is fun and games is sick in the head.
I don't think doctors are ALL stupid. We have had some great ones. We have also had some bad ones, case in point, this week's events. Most doctors are overworked and do not give each patient the amount of time needed to make a decision about their case as an individual. Many orders for Samuel's care this week were given by a doctor who saw us on the second night we were there and then never returned. Samuel was treated based on prior patients history and not as an individual. Chemo protocols are written to treat all patints with similar factors the same way even though everyone is different. Either there are too many sick kids or not enough doctors to care for them.
Why do I continue to take him to the hospital if I think I know better? This should be a really simple answer....because he has serious medical conditions CAUSED by the very same establishment trying to cure the cancer they think he has. He has lost body parts, he has had body parts added to make him function as normally as possible. This would be all fine and dandy other than that they keep dumping poison into his veins and the very same poison that caused all these problems is continuing to do so. If I choose not to take him back to the hospital, he will die. I would like to run away, never go back, move to a place where cancer and chemo don't exist. I want to shelter Samuel, take it all away, make it better, but I cannot. I am the parent and 99% of the time, I DO know best. That would be because I educate myself and use each and every resource I have, be it friends, nurses who will stand up for us, whatever. I have told these people for two months that there is something wrong....yet now once the problem gets really acute and life threatening do they listen. These same people were going to send us home on Tuesday other than I was adamant and insisted they figure this out.
The hospitals here are a business. We have been called customers by these people. An RN friend even told me that is is "all about customer service." They work for me, I don't work for them. I let them have free range to help Samuel in the beginning even though my gut screamed out that something was wrong and because I went along with the program, he suffered horrificly. The simple fact is that doctors make mistakes, Oncologists seem to take a less personal interest in their patients than the rest we have seen. We have been cared for by Neuro Surgeons, General Surgeons, GI docs, Cardiologists, Infectious Disease docs, pretty much, you name it and 99% of these people treated Samuel with a lot more compassion than his Onc's ever have. Critical things have went wrong in Samuel's past care, things have been misdiagnosed, or undiagnosed until they caused enough damage that parts had to be added or removed. So if you wonder why I rant and spend time writing this all out, it is so hopefully if you very lucky people ever have the misfortune of your child getting a life threatening disease, you can know that you, as a parent, as a patient, have rights. You need to know that hospitals are not perfect and you need to be an active advocate for your child. You need to be there 24-7 and oversee everything or you are risking your child's life. These people are TOO busy to give you the attention you deserve most of the time. For the most part, you are just a chart. Samuel has suffered so much in the last year that I am still trying to mentally take it all in and deal with it. I post this here, on a website that I PAY for so that hopefully someone can be helped or feel empowered to stand up for their child's rights and demand the "excellent" care that so many hospitals say they give. I hate to go to bed at night and think that all Samuel's suffering is in vain. If this helps even ONE person to not suffer the same consequenses, I would feel so much better. I cannot think I am going through this and God does NOT have a plan in it somewhere. My mission is to make sure my boy lives and suffers no more. Honestly, if you are turned off by the truth, stop reading the updates. One day my boy will ask what happened to him and should something happen to me or Mark that we will not live to tell him, he can read it all for himself and know that he was so loved that we were willing to sacrifice EVERYTHING for him.
Last year we got the most horrible news that is every parent's nightmare....Samuel had leukemia. And after that we had the roller coaster ride which tried and tested every inch of my being, not to mention the entire family. Samuel got pnemonia with no white count. That turned into an even more tragic event when his abdomen and body gained 6 pounds in fluid when his colon started falling apart. The trouble was, that no one knew it. He had so many things wrong that they could not put enough IV's in to get all the drugs in they needed to. He spent a month in an ICU where we were NOT allowed to stay at night. He went for an "exploratory" surgery of the abdomen and came back with no colon. It literally fell apart in their hands. Prior to that, no amount of narcotic could touch his pain. I had to leave him EVERY night twitching and writhing in pain sometimes with nurses I did not like or trust. As if that was not enough, then he stopped talking, moving or doing anything. His head and eyes were pinned to the right side. First our Onc thought he had had a stroke. We were told our two year old had a STROKE..... Then the Onc decided his Laukemia had come back in the CNS which meant sure death at that point. We spent a night pondering that at home since we could not stay with him. Finally he was diagnosed with hydrocephalus of an unknown origin. He had seven surgeries in seven weeks to try to get a shunt in that would drain the fluid from his head. I had to send my baby, whom at that point we did not know if would ever be the same, off to be cut up. He did not look like Samuel, he did not act like Samuel. His lungs collapsed, his heart rate hit the roof several days in a row, SEVERAL times. He had fevers for three months, every day. He was never able to sleep at night without pain. He could not tell us anything. We were told he probably would have brain damage and never be the same. We were given little to no hope several times. We lived for months seperated from family, miserable, broken hearted, and trying to take comfort in the MANY kind people who crossed our paths. I spent 100 of last year's 365 days in a hospital with Samuel not knowing what the outcome would be, if he would live or die, if he would ever be "Samuel" again. My husband whom is the love of my life had to be both Mommy and Daddy to my older kids who had to come to terms with a major life change. They had to ponder the question of whether their brother would live or die as well. We had to make decisions that would tear most marriages and families apart. We has seen horrible things, and had to do awful things to our boy to "save" his life. Believe me, if leukemia did not have such a good outcome statistic with chemo, I would walk away. All I can do is the best I can do. I owe Samuel the best I can do. If that means getting in people's faces when they can't step up to the plate, then I will. If that means I lose friends or piss people off, then I will. If you don't want to know what REALLY happens when you go through a life threatening disease with your child, feel free to NOT read. This is my journal for my family, and to keep the friends who LOVE us up to date. We owe them that. They prayed us through a lot. They gave of themselves unselfishly to help us, complete strangers in many cases. The fact remains that the hospital system as it is now, needs some kind of improvement and we who are the patients stuck in this system need to be able to survive and know our rights so we can help our children.
After getting home, we discovered in a meeting with our new Onc that a lot of the things Samuel went through DID NOT HAVE TO HAPPEN but we were simply not educated enough to know it at the time. When you child is diagnosed with cancer, you tend not to think sensibly. You WANT to trust your caregivers. We learned a very hard lesson that I would prefer NO ONE ever learn. Until you have spent three months in a hospital with your child who doesn't talk, walk, move even one finger, along with your newborn baby who has to grow up there and wonder if your child will live, you simply do not have the capacity to GET where I am coming from. And the tkicker is, it is not over. The drama continues. I want my boy to live to be old enough to read this journal and KNOW how hard we fought to save him. It is not an easy thing to constantly fight the system when you don't feel you are getting good care but at this point, I will never sit back and let them do whatever without asking questions, denying things I feel are wrong. I did not listen to my gut once, and it cost Samuel his. I will never do that again.
We are stuck with the medical system and will be for quite some time, either that or we just let Samuel die. This last year can NOT be in vain.
So if you wonder why I am bitter, read the WHOLE story before asking a question that gets everyone on my list stirred up. A lot of these women are my friends, they feel as if they know us, though we have never met. A lof of them have literally saved my sanity, and definitely saved Sameul's life with every prayer, gift and all their love. I am just in awe tonight at the wonderful group of friends I have. I am thankful.
I asked Julie, our RN today and a lady I consider my friend, if I was just out of whack this week or if other people demand a more personal service from the docs. She told me that families who come in for one thing, say a surgery and then leave, don't know much about how things work and simply do as they are told. But families who are in a lot learn how the system works and how to operate in a way that you get what you need from it. It is hard to relinquish the reins of control over to the very people who have caused some of Samuel's problems either by chemo or neglecting to hear me saying "something is WRONG." That I have been saying for months now. I don't find it out of line to demand better and try to get rid of the bad. We have had enough bad. I can tell you I don't want to talk to an Onc about Samuel's rectum NOT BEING THERE. That is just dumb. She is trying to doctor out of her forte, we had another doc who did this and paid the price.
On a different note, but while I am airing things out tonight so I can sleep tonight, it has come to my attention that there is a new sling biz starting up selling slings that are "just like the Pea in a Pod." It is interesting the things that come around. Someone wanted to know if I am pissed....LOL! You know, it is a free country, free enterprise and such, I cannot possibly serve everyone who wants a pouch. Neither can many other sling makers. I would like to offer my experience to this person so she might be aware.....if you can weather the storm of people talking about you behind your back and calling you all sorts of awful things, go for it. I hope you have a thick skin. I have been there, done that. It wasn't fun. It was a lot of work, and a lot of heartache. Thankfully, I don't need to be in the "IN" crowd or I would have given up. My pouches were designed with Samuel in them. They were made to keep him comfortable. They were made to pamper my boy and make his life better as were the diapers I sold. They were a labor of love. People like them, some people love them, some don't. I am going to be a bigger person than the one who tried to run me into the ground and say good luck to you. There is a lot more to a successful business than a product. Reputation is everything. Starting out as a self-proclaimed copy cat will be a thorn in your side in a lot of people's eyes. Honestly, I have more important things to do than concern myself with this but please understand, when you say you are making a pouch "just like the Pea in a Pod," you are attempting to make a product that is my child's legacy. I hope you are prepared to work very very hard and spend a lot of money in perfecting it before comparing it to mine.
Just want to send some love and thanks out to everyone who has prayed us through yet another hurdle. We love you!
1.22.05
Someone finally pulled their head out....we are getting ready to go home.
1/22/05
Sorry for the lack of an update. Things continue to be very frustrating here and I haven't felt like writing because thereis very little good I can think of.
Well, there is good....but it is highly muted by the frustrations here.
Samuel's procedure was a success, his NG stopped pulling up bile and his stoma produced a lot of poop. He was allowed to start clear liquids yesterday at 11am but only because I insisted and became a burr in their butts. Else they were content to let him starve. He hsa not eaten since Sunday night. We started with Pedialite at their request but I got them to okay breastmilk as a clear due to my past success with it so he was fed over 20oz of breastmilk by late last night. I watched an immediate perk up, and my sad boy who cried for food for the last few days was suddenly a happy boy. He has been so sad that he literally would say, "I'm sad," and put his head in his hands and sob. The breastmilk gave him an immediate energy surge and he did not even nap yesterday. He was literally bouncing off the walls. I had to insist all day for him to be taken of the IV fluids since he peed over 20 dipes yesterday. That was finally done at 9pm and we ended up walking the halls around 10pm. We ran into ourfav night nurse, Kat, who hasn't seen Samuel since he was a vegetable and she just came unglued with joy. We were okayed for a fluid diet last night, again, after a LOT of insistance on my part. This has just become so stupid that I cannot believe it. So he was back on his usual diet last night which was good. It is amazing the amt of fluids theywere running through the IV trying to get his electrolytes in balance yet they only made them worse. Proving outright that synthetic minerals are not as efficient and NEED other nutrients to make them do what they are supposed to do. So while his labs looked pretty out of whack yesterday, today is a huge improvement. Unfortunately we have not seen his blood counts today and they have been out of whack for the last few days. Today is the day they would be pretty accurate, and NO ONE ordered one. I am ticked. You would think that if a surgery is on the agenda, they would be watching the trending of the counts. Yesterday hiw WBC was 6600 and his ANC was 4545. The day before it was like 2200 and 950 respectively. So we are not really sure which is right, nor are they so not doing a CBC makes no sense to me. We had an uneventful night and actually got some rest thanks to our RN, Connie, who was just awesome.
The Onc I told to NOT come back will NOT let us go. Surgery requested to take our case on as the primary service and the ONC refused. I have complained, jumped up and down, had several discussions with the social worker, had yelling matches with her, and STILL no change. This is starting to now seem like Anna's hospitalization with RSV. All the main docs are stupid and the ones I like are not even our primary team. All the decisions being made are being done by an Onc trying to doctor out of her profession. I am still just livid.
So today, we are trying to get released. I say trying because the head surgeon wants us to stay. The Onc seems to think we are here indefinitely and the Fellow Surgeon wants us to go home. They are doing nothing for Samuel at this point. I took his suction NG out yesterday, disconnected him from the monitors....again, I asked for them to get these things done but after several hours of not so patiently waiting and getting NO answer, I did it myself. Funny how it was okay but the time they figured it out. I also fed him FOOD without an answer from them because I think it is unreasonable to request an answer at 4pm and have no response at 9pm. I feel right now like we were here yesterday as a courtesy to THEM and there is no reason to keep us today.
I am absolutely ticked even more because now it seems this problem with the stoma has been coming on for a few months, probably aggravated by chemo and I have been caring for him and taking care of it WITHOUT their help, and NOW they want to be all over it and tell ME how important hydration is.......Those who read my updates know I ALREADY KNOW this and have been trying to educate my own Onc about this. The fact is that we weathered a lot of the bad at home with no help and we are seriously talking about a day and a half at home before coming back to get some answers. Further, we will be inpatient again soon so a little break would be good fur us. The Onc I currently cannot stand is off Inpatient Attending next Friday and our Onc will be on for the following three weeks. So that will be a relief. Trust me, nothing will be scheduled until NEXT weekend...period. Inpatient that is. I was supposed to get an answer by 11am and now it is past...again, the doctors are TOO busy. They have made decisions for Samuel based on the chart and nurses notes, not by talking to me which is also a big irritation.
Anna did fine at home until lsat night and now she is refusing to eat. So if we stay, she will be coming in too, which will just add another inconvenience. But I guess, at least she can go back to her fun habit of burping in doctors faces and puking on their shoes.
Samuel wants to go home, he has said so many times today, yesterday and the days before. This is just stupid at this point. We need to go home and prepare for the next week and a surgery, both physically, mentally and financially. If I am not home, I cannot work. Samuel has beenunable to eat by mouth so I have been literally starving all day until he goes to sleep. Sleeping here has been rough, it is hard to rest when you are pissed. I am so thankful to our night RN Connie for reaslzing I am worn out and leaving us alone for over six hours straight so I could sleep. Samuel and I have been sharing the bed since he woke up crying so many times the first night. It is just easier, though less comfy.
At any rate, I hope to have some better news soon. I do have my fav nurse, Julie today, so all hope is not lost. She will be here for the weekend so if we have to stay, I should have here. Honestly, I am considering leaving AMA like we threatened with Anna.
Thanks for the notes of love, prayers and encouragement. You guys are the best! Much love.
1/20/05
Just a quick note to LYK that we are still inpatient. Samuel's OR visit did not happen yesterday but rather today. Nothing ever goes without complication and this visit while starting out nice, has turned sour. The very first day, an RN changed Samuel's bed while he was at Xray and accidentally put a blanket that was HAND MADE for him in the laundry. I never noticed it was missing until after the laundry was taken away. So it looks as if it is gone. And if they find it, if it gets washed, it will be ruined. I am so annoyed about that. I told the Oncology team to not bother to come back to my room while we are here, and have had several yelling matches with the attending Onc who apparently enjoys a good fight. She was back in here tonight to talk me into letting them continue watching Samuel while we are here. We have asked that the surgery team take over our care solely based on the past two days.
As it stands now, it looks like there will be a surgery. We still don't have a clear cut answer to what the problem is or if it is solved, but at this point tonight, he has good flow coming out of the stoma. I have drained 00cc's since the proceedure to dilate the opening was done today. That is roughly 20oz of poop that has been trapped in there. They are still draining his tummy through his nose but if the fluid stays clear, he will be allowed to be tube fed tomorrow. If not, then TPN has been mentioned but I have already said no to that. There was first talk of a stoma revision but now talk of hooking his gut back up instead. The problem now is that since his butt exploded, they have found the anatomy is not quite right and did not find what was supposed to be there either. So a CT will be done next, of the pelvix to see what is left. This, of course, complicates things but I guess that is the nature of Samuel. If he can be tube fed, then we have been led to believe we can go home and then return Monday for a CT and another study if necessary. I keep thinking I have never been so pissed off, and then something else happens so basically, I am pretty pissed right now. I am sick and tired of Samuel suffering and having to do battle to get him good care. I literally want to throw a big heavy object at the attending Onc's head. It is entirely amazing how things can turn sour by just ONE person thinking they know it all. I think we all know that I am up for a good fight, certainly not a wilting flower, so I look forward to another battle tomorrow. It is so unfortunate that there are doctors like this. Samuel sleeps soundly tonight and has been pretty comfy since yesterday. Our surgery team, and of course staff of RN's have been absolutely wonderful, and I think are secretly enjoying being a part of another team of staff being told off regularly. So we have lots of support in that area. At any rate, we have a lot of decisions to be made over the next few days again so please pray that I can think despite the cloud of anger I feel right now. Thankfully, I have Mark who is home with the kids, not entirely engaged in the fun here and he can be rational. The kids came in today which was great. A.D. missed the booby a lot but is doing great at home, thank GOD!! Samuel was happy to have some playmates today but arrived grumpy from his proceedure this evening. He is such a trooper and has had many visitors, staff members, come to see him. I did finally get a breast pump yesterday...first they told me they did not have a manual but only electric. I declined until about 8pm when I was engorged. So I told them to bring one up around 9pm or so when I might not get interrupted by docs....can you just picture that? But apparently, someone found a manual, and it must have been a real antique, looked like a bulb syringe with a fluted end. The RN brought it in and told me that no one at the dest could figure out how to use it. So you might imagine their surprise when they came in an hour later to find I had 24 oz sitting on the table.....it was pretty funny. I put it in a breastmilk refrigerator but seems there is not contest for room, mine is the only milk there. An RN asked me if I was going to pump and dump and I said ABSOLUTELY NOT. This was to be Samuel's first meal. I am sure they think they have a nutcase. They talked about calling in the dietician and I just laughed in their faces and told them not to bother. I see now why I have felt like I never wanted to be inpatient again. I am not willing to surrender control to these people who have basically treated us like LAB RATS....that would be the Onc team. Anyway, I pray that his body clears the built up poop out tonight and he is able to eat tomorrow because that means we can get out of here. Please pray for that if you get this tonight.
Much love.....
1/19/05
Thanks so much for your prayers this morning. The plan for the day is for Samuel to go to the OR where they can put him out and get a good look at the stoma. Now they think the stoma site is blocked and wanted to drop a tube in it while in the room but I let them know that a procedure like that NOT under sedation was NOT a good plan. So they are going to try to get a look, possibly put some contrast in to see where it goes. If they cannot get it to resolve, then he will go back to the OR for a stoma revision which will keep us here longer. Mark and I would not be surprised if it needs to be revised given the way it looks and acts currently. We are not thrilled with another surgery prospect but at this point, we NEED to get this working right and get him out of pain. He has one NG tube in drawing stuff out of his tummy and the feeding NG in the other side. He is NOT happy. Mark is hime with all the kids including A.D. who so far is doing well even though she does not have a booby. I don't have my breast pump with me so they will be needing to make a trip up here soon. Samuel's labs are completely out of whack after a full night of hydration. He hasn't peed much so I assume that is why but everyone is a bit dumbfounded again. Samuel defies logic so I don't know why they are surprised. We are hanging in and praying this stay will be short. I am finding joy in visiting with all the staff who cared for us over the summer and helped get us home. Our neuro team dropped in and were able to see Samuel looking like a typical two year old and told me it did their heart good. Samuel wants to eat, go home, play with toys or just get out of this room. I packed a small bag yesterday just in case, so thankfully we have a few things. But not the usual amount of toys for him. Anyway, I will keep you posted and appreciate so much your love and prayers for us today. We are looking forward to getting home
Just a quick note to LYK that Samuel was admitted to Childrens tonight due to dehydration. Gee, what a surprise? There is obviously an intestine issue that we will hopefully know more about tomorrow. We will not be coming home until it is resolved. Right now, that looks like it could be a few days to several. We are back on our favorite side, G3 so it was a sort of a homecoming in a sad way. All of our friends, the nurses, were happy to see us and sad we will be staying...
It has been a long day and it is well after midnight now but please pray we get some answers tomorrow and won't have to stay long.
Much love.
Update 1/18/05
Throw up alert at 3am. I guess he saved it up from the day. Still not much out of the bag and he is in a lot of pain. We will be heading up to Seattle early today, as if 4am is not early enough! Please keep us in your prayers today.
Update 1/17/05
I would like to say that things are better here, but they are not. After Samuel's puking yesterday, he got up from his nap well rested and starving. He screamed until we allowed him to eat. However, then he stopped pooping again and now has had very little since yesterday. We are beyond the 24 hour mark now and there has been maybe a few oz of poop, this is not good. He got up relatively happy today and has not been crying about his air bag hurting, which is good, but it only did not hurt because nothing was coming out of it. No puking today, which is surprising given the amount of time he has complained about his tummy hurting. The bottom line is that with nothing coming out, but stuff still going in, that poop just sitting in there blocking him up gets toxic. And given the amount of poison running through his body right now, we need to get that out.
Monika and I had another long conversation about what could be up. I think we have all now pretty much ruled out chemo causing him to puke, and instead, it is definitely a blockage somewhere or possibly a kink allowing some fluids through but not food. Adding food is only making it worse at this point. So he is back to clear fluids, again in the hopes that this will bust it loose and get it out. Monika told me that if it is kinked they will most likely want to admit him, and start IV fluids and give the bowels a rest to see if it will fix itself. Obviously, we want to help him NOW but if we can forego this, that would be good. As long as fluid is giong in, and passing through somewhere, he is not dehydrated, we are on the right track.
So the plan is now, to call Seattle first thing in the morning and see if we can see a GI there, other than the two we have seen so far and either get an xray or CT and figure out how to get him relief.
I love it when I write an update, and then Mark reads it and it becomes a conversation we never knew we needed to have. Talk about a great way to communicate things that would have probably been spoken much too late. (I just love you so much, dear!) We kicked around the idea of seeing the GI at MB half the day today simply because while we want an outside opinion, if there is a surgical need, or even need for a CT, we want it done in Seattle, period. We don't even want MB accessing his port at this point. So given the nature of his condition now, it is obvious that unless things change drasticly overnight, something needs to be done, even if it is to just look. So it doesn't help to drive all over the world at this point. I still want an outside opinion about the problems with chemo, etc, but it may not be this week after all. I would like to have one day where Samuel can play without stopping every five minutes to scream in pain. We used to get these every day, now we seem to get one never.
He is in bed now, and it is once again late. He got some Ibuprofen which won't help his gut much but should allow him to sleep awhile. He is back on the tea diet so I am sure he will wake up starving again. Please pray that this resolves tonight. Much love to you!
Update 1/16/05
Samuel threw up all over his clean bed right after I finished last night's update. If this continues, we will need to go get more sheet sets for his bed because even under the best of circumstances, it is inevitable that some puke will ruin the whole bed. He was a sad man. He did sleep well despite this. It became evident that we are going to have a problem with dehydration if this continues for any amount of time. I hooked him up to a mint tea concoction with a good balance of electrolytes and he made it all night without throwing up and woke up in good spirits. He played most of the morning well, but puked again this afternoon, again, all over a clean bed. Thankfully I have been washing bath towels daily so we were stocked. No more solid food for him until we know for sure what the problem is. The liquid seems to go through okay, but solids are just sitting and being tossed later. His air bag has produced lots of "water" which is expected on a clear liquid diet but this is coming out fast and lots of it so we are trying to keep as much going in as coming out. This proves difficult when he is throwing up. A vicious cycle? Indeed. He is currently napping with broth going in so hopefully that will stay down.
If Samuel had not had so many bowel/abdominal issues, one would just say that he is throwing up due to chemo. But with his other problems, it is hard to figure out if it is that or a intestinal blockage. Monika and I had a long talk last night about his gut, the scar tissue and if because he suddenly has lots of "blockages" and cannot handle solid foods, if there may be a bigger problem that is not simply going to resolve with clear fluids. Meaning, a part of the intestine has kinked on itself, or scar tissue has caused an adhesion maybe partially blocking him, but still allowing fluids to go through, just nothing else. We talked about the Vincristine possibly agitating something since he seems to have never recovered from the last dose. I don't know and we are both tired of guessing, frustrated that he is back to puking daily, if not two or three times daily. If there is a bigger problem, then that is a surgical issue. We all know how I feel about hat. SO Thursday's appt will hopefully help us rule out some things and ultimately help Samuel feel better. At any rate, I had visions of us winding up in the hospital if this situation continues. When we get to the point of everything coming up,via puke, or out via watery poo, and nothing going in and staying there, it will be back to the hospital for us. And again, any surgical thing will delay chemo and prolong this crappy process.
I guess we will have the GI doc from MB see him and make recommendations that we can then take to Seattle to carry out. I don't think I can stand to have any proceedure done at MB, not even a CT of his abdomen. That should be a royal pain for the docs I am sure.
Much love.
Update 1/15/05
No news is good news....no phone call from the Onc regarding Samuel's spinal fluid so I take that as an all clear. They usually get it back within a day. So that is good news, not that I expected bad.
Samuel is having a rough day today. Seems for the typical Methotrexate poisoning, about day 2-3 you see the side effects. Samuel is feeling sick, flu like and throwing up. Wanting to eat but unable to. I finally got him to take a late nap but he is waking up and crying every half hour or so. He has been saying his tummy hurt for two days now as well as his air bag and it is just so difficult to know what the real problem is until you see something like puke. He is a sad man today.
We made an appt for Samuel to see our old GI doc in Tacoma next Thursday so hopefully we can get some help or suggestions on how to help him better from her. It could not be any worse than the lack of help we have gotten in Seattle so anything is worth a try.
Update 1/13/05
Things went well today for Samuel, or as well as you would expect on a shot day. He knew it too because the minute we went back and waited he was upset. The last two times he got injections, he never really knew what was coming but this time he did. I told him he could pinch me and he did. The shots seemed more painful than the last time but maybe he was just upset that I would allow this to happen and cried longer. There were no problems after the shot other than my older kids could not seem to behave themselves. I ended up walking the three up and down the hall while we waited the mandatory hour afterwards. We ran into the Onc who is always courteous and friendly and wants to know how Samuel is so I guess he doesn't hate me too much, LOL! He could ignore me and walk by and being the mostly blind person that I am, I might not even notice. The day was not as long as yesterday but somehow we cannot seem to get home and accomplish anything beyond the bare minimum. So tomorrow we will do damage control on the house and school again as well.
One of the nurses in the infusion area asked me today how many kids I have. When I replied "four" she said she saw me out in the waiting room and though I had more. Then remarked that she thought I was crazy. I almost told her that I thought she was crazy to want to work THERE but instead told her four kids was a breeze until cancer showed up. I think we manage it quite nicely though they probably wonder why they are not in school. I tied off all the pads from the auctions while I waited for Samuel to get done today and I am sure they all wondered what those were, LOL. I remember the looks I got when I had Mark bring the sewing machine into Mary Bridge so I could finish up projects. Well.....at some point a person has to work and since we had such an extended stay there, it was not like I had anything else to do when the kids actually slept at the same time. Some people should just keep their mouths shut about things which are none of their business and luckily I was feeling nice today of she might not have liked what may have flown out of my mouth.
Samuel went to sleep last night without pain and misery for the first time in weeks. It was nice! Tonight he was complaining again about his air bag hurting but managed to get to sleep without needing drugs. We were supposed to go back to Seattle next Friday, but due to the four day week, and not as many docs there, it was moved to the following Monday so we get about ten days off again. Yeah! I am not a procrastinator most of the time, but I have no problem putting this off a few extra days. I hope we can actually enjoy this time, rather than muddle through ups and downs.
I hope you all enjoy the weekend too! Much love from us here!
Update 1/12/05
We were able to start Interim Maintenance today. Samuel's counts as follows....
WBC 2700
ANC 1215
PLT 512K
HCT 34.7
His ANC had to be 750 or better to go forward today. His weight was up to 14kg from 13.6 last week so that was good news. His liver enzymes returned to a normal state so that was also good news. The blood cells showing an anemic response are still showing it and probably won't normalize until his HCT has been in the normal range awhile. I don't know it it will stay there or not. It is the wait and see game.
Somehow taking a ten or so day break and going back in made it worse to be there! The clinic was busy and full. I want to be sick when I look at all the kids there knowing the crap they have to go through. Anna played with a bald 20 month old girl who was half her size today. Anna is quite a chunk at 22 pounds these days. Another mom wheeled her toddler boy in the waiting area but he was crying and so sad that she decided to walk him up and down the hall instead. Breaks my heart. Then he started coughing and sounding sick so who knows what horror he was living today. Samuel woke up hungry, which figures since he was not allowed to eat anything until after his proceedure. I usually fudge a little and let him have water a half hour or so longer than they say to because they are never on time. Today was no exception. We waited over an hour just to get back for his port to be accessed and labs to be drawn. After that, it was almost another hour. We watched everyone who had been there before us get called back, and then four or five who arrived after go back and I finally asked if we were lost in the shuffle. I guess we were not, there just were no rooms open. Thankfully, there were volunteers there today to play with the kids so Kaysha and Daniel were entertained. Anna was also quite good but then, she thinks that is home and that home is some strange place so she is content to play there happily but whines most of the time here. After asking about Samuel's place in line, I came back to play with him and noticed "the smell." The smell would be an air bag leak. I had dumped it twice in the time we had been there and it was fine, but at that point, it had seperated from the skin. Talk about a pain! Plus he was then pooping all over himself, the very thing that causes the skin to worsen. I went back to the desk to let the girls know that if there was a room, we needed it right then and interestingly enough there were then not one but two rooms open. Mark and I took Samuel back to redo the bag which was good for a huge screaming fit with lots of poop all over because when he screams, it just flies out. The skin still looks bad, red, raw, and bloody. It is so annoying! We got him cleaned up and Mark took Anna back out to wait with the kids while we then waited for the Onc.
We got there at 10:15am and saw the Onc at 1pm. We are not sure why they bother to even schedule stuff when they are never on time. Every trip seems worse than the last. By the time the Onc showed up, Samuel was looking sickly. He was pale and begging for water, which he couldn't have. He was crying that he was very very hungry. The Onc wanted to know how our week went so again, I gave him the lowdown. I am thankful I write these things down because it makes the conversation clear and concise rather than stumbling around. Apparently he had forgotten that when we were there last week, Samuel was still miserable proving once again that they don't think about you past the five minutes you are in their presence. So I reminded him of his condition last week and told him that it took until last Friday for him to get back to somewhat normal. He is still surprised that Samuel could handle all the previous poisons that knock kids out just fine but cannot handle this one. He STILL wants to discuss Vincristine every time he is due for it. I told him in no uncertain terms, that it is not acceptable to me for him to just get better and then be made worse again. While he was pondering why Samuel would be so sensitive to this poison, I reminded him of how many abdominal surgeries he has had. He has had five abdominal taps to remove CSF. He has had 6 shunt revisions which required incisions there. And who could forget the major abdominal surgery where he lost his colon. How many is that? That would be 12 surgeries in less than 4 months. Is it any wonder his gut would be so sensitive? I am going to quote Monika here, "I don't have a medical degree, but common sense tells me...." So then he decided that maybe Samuel is just one of those kids who cannot get Vincristine anymore. That worked out well, he thinks it was HIS idea. I am sure this is not the end of the conversation about it, but hopefully in the five minutes he spent with us, it sank in. I again had to remind him that Samuel's stoma is not simply another place that poop comes out, but instead another place to cause issues when it cramps up, pulls in and almost disappears. He told me, "well, it won't disappear, it won't go inside," proving how little he knows about it. The surgical nurses already told me this can happen so I told him that and he was taken aback. The Onc does not strike me as a foolish or stupid man, but like Mark says, it is just hard for them to wrap their mind around chemo and a stoma. I told the Onc that I have never ever sat out in that waiting room and seen a child suffer as much as Samuel has, and he agreed that he has more than paid his dues. It will be interesting to see how much of this he remembers next time. I just LOVE being a number. In fact, I asked him if he remembered back when we first met in July. If he remembered what a pittiful state Samuel was in then....he did. We saw him every day for three weeks in a row, he ought to know I don't play around, and take this very seriously.
Speaking of seriously, we were called "customers" while in the sedation room for poison. Customers? Someone is not taking their job seriously. Mark kind of laughed when I told him but I think it is about as funny as their calling a spinal tap a back poke. Somehow minimalizing it. Don't these people know that they are dealing with life and death here? They don't know who will live and who won't. And we ran into the Onc Fellow who was working with our Onc while we were inpatient and he made mention of no patients meant he did not have a job. Would that be a BAD thing? I asked him that too. I would feel really sorry for the Oncologist who did not have a job because no one had cancer anymore....NOT!
You know, I don't want caregivers who are glum and doom and maybe as cynical or critical as I am toward chemo, but a few people who could maybe realize that we are NOT CUSTOMERS would be nice. And we are not there because we want them to have a job.
I have a lot of respect for the staff at Mary Bridge and especially the social workers, Mary and Tammy who treated us like family. They are REAL. They were not afraid to tell us that coming to work was hard, they hated seeing the things they did. They rode that roller coaster right along with us and did everything they could including suffer right along with us. Mary said she did not know how much longer she could do that job, it was so sad and hard sometimes. These are the people I want to deal with. They could share a laugh, a smile, and a tear. They helped, they were grounded with reality, we were NOT a number. I think the RN's in the Surgical unit at Childrens were like this as well. Maybe because they were not hardened working with Oncology patients that they did not want to bond with because you never know who will be here tomorrow. Well, I am sorry but I am NOT a number and refuse to be treated as such and if I have to be obnoxious to be remembered, I will. I have always tried NOT to treat my own customers as customers, but as friends instead. Is that SO terribly difficult? Caregiver......I see the word care in there, doesn't that mean anything anymore? Some of them are hereby now called Crappygivers.
My other beef with the Onc today was to remind him that Samuel cannot go without water for prolonged periods of time, need we forget the surgery that was stopped in the OR due to dehydration? He begged for water for the entire time the Onc was there and I pointed out the black rings under Samuel's eyes, the fact that his port did not draw well and told him that from now on, he needs to be accessed immediately when we arrive and hooked up to fluids. Especially since they have a habit of being late. He asked when our sedation appt was and I said it was at 12:20 so were were almost 45 minutes late already. We should have been done by then. He agreed that this could happen from now on when a sedation is on the schedule and Samuel has to be NPO. They ordered fluids but the did not arrive until after his spinal tap but I guess the Onc heard me loud and clear on this because he ordered it at a rate of 250cc's/hr which is a lot compared to the 50cc's/hr they usually run. By the end of the hour, he not only looked better but also all physical signs of dehydration were gone as well.
Finally, we discussed Samuel's weight. (I am sure the Onc was relieved when we finally left!) His weight is up, which is good, but i told him that Samuel is starving still and has only been able to eat by mouth in the last few days. After months of him refusing to eat anything, I don't want to ever allow this to happen, either by his choice or because his gut is stopped up. He was happy to see his weight up and actually impressed that he hadn't lost more, and seemed to be averaging around 14kg or so. And I guess compared to the kids we see in there, he is quite plump so to the Onc, he looks really good. Amazing the things that are normal....to them. Anyway, Samuel not being able to eat is another one of those Vincristine problems which should be a problem no more.
After all that waiting, Samuel's ANC was still not back so we weren't sure if we were starting IM or not. His WBC was back and I was surprised it was not higher. The Onc said that was where they figured it will stay now. That explains why his stoma site won't heal, and why it never will if his counts remain down. Another HUGE frustration! They have no clue how muich that raw wound hurts him. The Onc left to see if the ANC was back and shortly after we were taken to the sedation room where I held him and they put him to sleep. He was playing with toys and told me he loved me very much before he passed out. I always hate leaving him. It wasn't long before we were called back after they were done. The fluid was clear which is always a good sign. I have seen it every color from clear to yellow to dark pink though. I don't think they call you to let you know good results but you can bet you will hear bad ones. Again, this is the least of my concerns. He got his fluids for the next hour and I had a glass of water waiting for him when he woke. The family was restless by then. It was about 2:30pm when they finally got his last poison in and we were able to leave. We did not get home until amost 5pm. It was a long day! I am tired.
I forgot until this morning on the way in that we have to go back for the dreaded Peg Asp shots tomorrow. This is one of four that are left in the protocol. Can't wait for them to be done. We have to stay an hour after it is given to make sure there are no life threatening side effects. This one has a 50% rate of side effects occuring in children who receive multiple doses. So you could get one and be fine, but have a major problem with the next one. Please pray that all goes well with this tomorrow, I can't help but worry about this one a bit. Plus I hate having him poked with a passion. The two shots were better than the one big one and he did great last time but still! Tomorrow should be at least a shorter day in comparison to today.
He got his first dose of Methotrexate IV today and they will raise the dose each time until they see negative side effects. Either an ANC less than 750, or mouth sores. Great. Another thing I hate about this, wait and watch. And when they happen, ride it out, there is no antedote.
Samuel is doing great tonight, I am happy to report. He was playing like crazy after a brief nap in the car on the way home. He has not been complaining about his air bag for the first time in weeks so I hope that the last of it is done and he can be happy now. Right now, all that matters when I go to bed is that he is feeling well and not hurting, crying himself to sleep.
I am off to ponder the world....Much love to you tonight!
Update 1/11/05
Well, it looks as if the snow may just miss us again so we will be going to Seattle tomorrow. I know I can't put it off forever but I just dread it anyway. Spinal taps suck because you cannot be present for it. Even though it is under sedation, they make you leave. At Mary Bridge, we were able to stay and the Onc did it which is perhaps why I think of him as the witch doctor because I saw it first hand. So I don't know which is worse. I hate leaving him to be poisoned alone, I hate watching him be poisoned, I can't win. So I guess staying home a few extra days feels like winning in a way. They always check the spinal fluid for leukemia and his has not been viewed for a few months now so I pray it is fine. I expect it will be, and don't worry about it tonight as I type this. I worry more about how he will cope with the next phase, how I am going to get weight back on him, if he will ever be happy for more than five minutes at a time. That kind of stuff. The only thing good about going to Seattle is that I can have a few hours of reading time on the way up and back which I usually don't get here because things always need to be done and I just don't sit around much except in the mornings until the coffee hits and I feel human.
Samuel was better today and played a lot. "Come and get me," he says as he taps you and runs away. Kaysha and Daniel taught him this one. They also like to play hide and seek. Samuel and A.D. seem to have a language all their own at times when they play so cute together. They can make each other laugh a special giggle that they only do for each other. His "air bag" pooped a lot today which is always a good sign but again he got out of bed and said, "I am very very hungry," as he rubbed his tummy. Today was not a day without pain either, he went to bed tonight crying that his air bag hurt and it is just so frustrating. He was able to take a very peaceful nap today and I have managed to get him and A.D. down together in the afternoon for the last two days and that is so awesome because I can get some things done in peace. A few hours without someone screaming helps my mentality a lot.
Special thanks to the person in the Seattle area who sent us the cash in the mail today. No name, no return addy. I guess that is what true giving is, not needing a thanks. Whoever you are, thank you, what an answer to prayer and a relief to my mind today.
Also, huge thanks to Kari M. for the huge gift today, another burden removed from my mind today. I was overwhelmed with the generosity of strangers today, thank you!
As I prepare for bed, which it is already so late and I will have to get up at a decent hour tomorrow, I ponder the conversation I will have with the Onc. He won't like it, or more like, he won't be comfortable with it, but NO MORE VINCRISTINE!!!!!!!!! At least not until his gut is hooked back up, then we can see. Maybe not even then.
Well, I should try to sleep before I wake to the reality of our life again tomorrow. Being home the last ten days has almost felt normal at times. It was nice. But not enough of it. Much love!
Update 1/10/05
I got my Samuel back on Friday. It is funny how you don't notice them slowly going downhill until they fully recover. Friday he got up and was actually happy. And his "air bag" actually made poop all day. We noticed that he was starving again and simply was in a horrible mood until he got food in him. Of course, nothing I offered he wanted so it was tube food, but that works for me. I cannot believe what a horrible week last week was for him, for us all. The saying, "When Mama is happy, everyone is happy," only partly applies. When Samuel is happy, everyone is happy. When he is not, everyone is miserable. From Friday on, I have been working like a mad woman to get some things made, up for auction, cooking, cleaning and we officially started schooling the kids again as well. We were doing things here and there but when Samuel feels so badly, everything else goes out the window. If you have sent me a note this week and did not get a response, that is why. Certain people should just call me, (Kerry, Tracy in VA) Then I would not feel like a dog when I don't get right back to you! It is hard to find a balance between getiing everything done that NEEDS done, vs. things I want to do. I always say there is not enough time in the day but honestly, I get a lot done. Kristine mentioned that I was pretty efficient the last few days, but at some point, you have to work, and since I am the only one who can, I need to as time allows. Kristina brought up that shen she makes her kids's schooling a priority, she feels like a great mother at the end of the day. I agree. When I can fit in their school, cooking, cleaning, worki
