Posted by Scott in
Feelings, on Friday, March 30. 2007 at
Today, as our nurse told me that when kids go home like this, all of the nurses line up and blow bubbles as we leave, I really almost lost it.
I've only felt like that since about noon today. the closer we get to going home today, the stronger the feeling is. I've been thinking about why, and have come up with a few things:
I stayed at the hospital a lot over the course of this treatment, and my coping mechanism for being cooped up was to befriend or become close acquaintances with most of the staff here on the 2nd floor. What this means is that there is a good chance that I won't ever see these people again. All of them that I know by name, they know me by name, that we may joke about their kids, or my kids, or the weather, or what's wrong with the various things on the 2nd floor. I'm deep-down hoping that I never see them again as an in-patient parent with Asher, but also hope that I periodically run into some of them in the outside world. The other day, the hospital posted pictures of every nurse in the central area on the 2nd floor and it really was nice to just see everyone there and have fond, or even not-so-fond memories of things that have happened. On the board there are nurses that we wanted to have every day and there are nurses that we put on our "do not give to me again" list. In any case, all of them that I met had an impact on me in some way. I'm going to miss the chatting I did here and now need to look at how to replace that with people in my community, or at work, or elsewhere.
Over the last few hours, I've really felt, for whatever reason, that there is a finality to this. I mean, sure, we're done with Head Start... medically. We may never be done treating this disease though, so I can't understand why this feels so... final. I know there will be a hundred clinic visits, numerous MRI's, pokes, dressing changes, and everything else for the forseeable future. Every time we have left, previous to this, I always knew that we would be coming back. I could leave the bags packed, or at least leave everything in an organized put-it-back-in-the-bag place. This time, everything needs to find a place. All of the crafts that Asher has made, or had made for him - all need to find a place, or be put in a box, or gotten rid of. All of the toys that Asher has now need to find their spot in our household. Our three kids can now play together daily again, having fun, yelling, laughing, hugging, getting on our nerves, and being the ultimate joy that they really are.
I've also been "not at work" for the better part of 9 months now. I have done some good work while I've worked from home, or the hospital, or even the office. I also have more to accomplish and besides the clinic visits, I'll be going back to the office where I can resume my job the way that I enjoy doing it. Hard-core and intense. There's so much to get accomplished, especially with a new boss and some VP-shuffling going on, that I could bury myself in work for months... I know that I can't do that and probably for the first time, need to KEEP my family first as everything re-integrates itself. I'll probably need to get on a plane once a month. I'll probably be on the road 2 hours a day. I've honestly kinda liked working in this "weird way" that I have been working and for the most part, it's worked out. It's not me though, and going back "into work" will be nice. If there's one thing, that really Steph and I agree on is that you are most effective at your job when you're actually in the office. Neither of us really agrees that you can be effective working remotely and definately your relationships suffer. Being back "at work" more than I've been should allow me to build back any relationships that I've let lag and get things done that I've always intended.
Overall, I guess I really just don't know how to feel. I can't imagine anyone feeling anything after seeing your child be in the hospital for over 170 days. See you child have a 104+ degree temperature for almost a month. See your child have a 6 inch "hole" in their head. I've been able to take most of that "information" and turn into into interesting scientific stuff, all while loving Asher. There really isn't going to be any more scientific happenings to cover up the feelings now, which i think is why they are pouring out, or at least bubbling up on the surface. Those of you reading this that have some sort of technical job may know what I mean if you've also been in somewhat of a similar situation. It was easy for me to grasp onto the acronyms and big words. I enjoyed learning the medical terms and in memorizing the chemo names and what they did. I also tried to keep track of all of the blood cultures, blood counts, tests, diseases, everything that was going on. I even relished being able to pronounce stuff sometimes better than the nurses and doctors when they had never heard of something that was going on with Asher. I guess there comees a point in which you need to turn off your head because you know you just have to "do this and make it to the end" and go back to being more parent than scientist. I guess my heart finally decided to show up and poke thru to the surface today. anyway....
Going back to what Steph posted a few days ago about this really NOT being over and what people are going to be saying to me as I run into them again. "Congrats, your done.." "How's Asher, I haven't kept up.." "I can't imagine what you've been through"... Sometimes I just want to bring a sign with me that says "yes, we're done" and "yes, he's okay right now" and "I'm okay"... All of those things you say to people who really don't care and are just asking because that's what you do. I'll hold in the real comments for those of my friends who really do care. Those ones that have been reading up on the blog every day and have been sending me emails or IM's at work to check in, separate from everything else going on. There's a few people that I work with that have gone through some pretty nasty bouts of cancer-related illness too. some of them still are. I know that I'll never forget those who were there for me, and those who weren't. I still have surprise at some that stepped forward, and sadness at some that didn't. You really, realize when you go through something like this that your true friends separate themselves from your acquaintenances. And the people that truly care bubble to the top.
who knows what this all even says to this pont. ... Lots of ramblings. I'm not even going to go back and read it to correct anything because then it won't be just stream of conscienciousness writing.
From here on forward, I guess I just have the following to say/think/whatever:
I hope and pray that this treatment has done what it was intended to do... effect permanent removal of the cancer from Asher. I hope and pray that we do not ever need to do any long-term treatment of this disease again. I hope and pray that Asher will learn and grow and play and enjoy childhood as children need to do. There will always be bumps in the road of life, and I hope and pray that this speed-bump that we've hit is behind us and, for a while at least, we can pick up speed and turn on the cruise control (at least a little) as we look toward a 4th child in our life and the start of kindergarten. I am so thankful that we've had a world-class facility in the town we live in. I am thankful for the fact that I've had a loving and caring work-support-team behind me. I'm thankful that I have a strong-willed, intelligent wife who has more common sense than the average person and always sets things back into 'reality' for me. I'm thankful that we've had some really great nurses and some really great doctors. I'm thankful for everyone that has helped out with work, food, childcare, etc. I'm also thankfull that this is the year 2007 and not the year 1957, or even 1997 because of all of the significant medical advances that have allowed us to treat Asher under Head Start III that, at least right now, has done it's job in removing any visible signs of cancer from my son.
Posted by Scott in
Chemo Round 6 & Transplant, Counts, on Friday, March 30. 2007 at
Day 17 post stem cell infusion
I remember when we started, the Dr. said that we would be probably going home between day +15 and day +25. 4 weeks has sure gone quick for me.
Today should be the day we go home, as long as something unexpected doesn't happen. Asher will do his normal hospital stuff for just one more day.
Asher woke up at 8am today and said "I need to take a shower and take one nap". Exactly what mommy told him. He's got such a good memory.
You'd figure today would be the day for what happened right after that. First, had to use the urinal. So, with that out of way, in walks someone we had never seen before, she looks at Asher and he goes "DADDDDDDDDDDDDDY!"
So, she asks him where to put the "little huggie" on and he points to his leg. While she's trying to figure out to use the blood pressure monitor machine hanging on the wall, she whips out her Temporal Thermometer (the one that you swipe across the forehead that every patient shares) and proceeds to ask Asher if he's ever seen one of those before.
Okay, so I've let her have some fun trying to do things the right way (at least she had all of the precautions right) and so now I stepped in and said 'Whoah, hold on, you can't use that on him, he's got his own, he's a transplant kid. do you know all of the rules?'. She proceeds to tell me how she's from the third floor and they've taught her "all about" precautions.. 'See, I have the gown and mask and gloves on' she says...
So, I let her finish up taking his temperature under his armpit with HIS thermometer and weigh his pee and then when the nurse came in, expressed my desire to not see that PCT again until she has been properly trained on transplant.
So, now Asher is watching Mickey Mouse Clubhouse and hanging out in his bed. I'm going to start to bring stuff out to the car in preparation for discharge and get my Caramel Macchiato.
-- Update 12:15 --
The doctors came in today and really only had two things to say. First, the neupogen will not be given today due to Asher's counts, and second, the last dose of meds will be started around 5:30 and we can go after that.
Counts from 04:45
Our nurse said that's the highest ANC that she's ever calculated. I guess the wbc of 29 is the reason for no neupogen today. The nurse said that with the marrow starting to come in like it is with neupogen it just shot the white blood cells up that high today, it's not an indication of anything like an infection.
Asher pooped at about noon and they are going to do a cdiff culture on it since they have the opportunity. We've also been asked to bring a stool sample to clinic on monday because they want to continue to make sure it's not coming back.
I've started to load stuff into the Car in preparation for leaving and also have been slowly taking things off the walls and off the ceilings.
Asher's in a decent mood today and really has wanted to just watch TV and play with a few toys in his bed.
-- Update 16:30 --
Asher has been sleeping since shortly after 2pm. He was looking very tired in his bed and when I asked him if he wanted to sleep in the couch (daddy's bed) he said yes and basically fell asleep the minute I left the room to bring some stuff to the car. Besides changing one diaper, he's slept solid for 2 1/2 hours and I've fully loaded the car with stuff in the room.
Everything is done besides the last antibiotic and once that is finished, we'll give Asher a final shower, do a dressing change, clean off his broviac and get him new ends. He's got some shorts and a shirt here too. Then, the discharge papers will be signed and we'll go meet mom and the girls at the SUV.
I guess the nurses here all line up and blow bubbles when Asher is done and leaving. I hope Asher enjoys it.
Posted by Scott in
Chemo Round 6 & Transplant, Counts, on Thursday, March 29. 2007 at
Day 16 post stem cell infusion
Counts from 04:00
platelet 54 (look at that, going up on their own!!!)
Asher will get neupogen today and tomorrow because his ANC is close to 1000 and they want to give him a good boost before GOING HOME.
The doctors said that everything was ready for us to home tomorrow evening (7pm-8pm) if we still wanted to do that. if not, we wait until monday. If we go home on Friday, there will be two clinic appointments - Monday & thursday.
Asher is doing good today after waking up about 9am from the nurse coming into check him out and weigh him (16.3 kg), but mentally he has no desire to talk to anyone, play, or even be nice. All of the people who have been in during morning rounds have gotten the scowl or a "daddy hold my hand". The minute the leave he's back to a happy boy.
I need to run and get some prescriptions filled, so child Life will come in to play with Asher for up to 30 minutes while I'm gone. Thankfully the pharmacy is about 2 blocks down so it should be a quick trip.
-- Update 11:30 --
Okay, all scripts are at the pharmacy getting filled. I did forget to write down the dosages prior to bringing them, but we got 7 prescriptions that need to be filled. Most of these are apparently available over the counter at places like Walgreens, but I had the pharmacist just get them for me because some of them are probably more expensive than my co-pay and it's easier under the current circumstances to just pick them all up at one pharmacy instead of running around. All of this will be ready to pick up on Friday.
Biotine Mouthwash - 2x a day
Nystatin - 2x a day (actually, only needed if he has mouth issues/thrush or something like that)
Oxycodone - PRN for pain
Ondansetron (Zofran) - PRN for Nausea
Hydroxizine - PRN??? for ???
The doctors had good things to say today. Asher has had 10 days of negative cultures as of Friday, so they said they wont' be giving the Saturday dose of the Antibiotics. We're ready to discharge on Friday evening after 7pm, after the friday night dose of antibiotics (6pm-7pm). We would go home after the dose and then the home health nurse would meet us to go over the TPN and hook it up for the first time. it's also recommended that we either give Asher a non-iron multi-vitamin or inject a multi-vitamin into the TPN. That means the flintstones complete we have won't be okay for Asher and we'll need to get another vitamin without iron for the next year or so. There are a bunch of them out there, especially the gummi ones, so we shouldn't have a problem according to the nutritionist. We don't want iron in the vitamin because of the amount of red-blood asher has gotten (high in iron) and may be getting, little kids can't have an overload of iron. Any vitamin that has < 200% of the daily allowance of stuff is okay, no matter the brand. She said that there's a good "beauty and the beast" vitamin in the shape of Belle available, but she wasn't sure Asher would like that too much, LOL.
They're going to give us a special toothbruth to use with Asher that's especially soft and if we can brush the teeth a couple of times a day, that'd be good.
The TPN today is going to be running over 18 hours and will be 65% of his daily calories and 75% of his protein for the day. As of right now, Asher has two cheese hotdogs sitting in front of him that he asked for. He did eat a couple of bits, but said "I need to let them cool off" and isn't eating any more. Hopefully he'll have a few more bites.
They want us to try and keep food records at home so that we can bring the information to clinic in hopes of removing the TPN after a week, if not sooner.
While I was out at the pharmacy (20 minute trip), Asher chose to just sit and watch TV. he didn't want child life to come in, and he did great. he did say that he "called for me" and then I came, so he must have done it right when I was getting back.
Also, this morning, the social worker stopped in to see how Steph was doing and found me here, so she talked to me for about a minute and then said she was going to go and call Steph.
That's about it. Asher really wants to watch TV & play Sponge-Bob ps2 game. Should be a good quiet day.
Posted by Scott in
Chemo Round 6 & Transplant, Counts, on Wednesday, March 28. 2007 at
Day 15 post stem cell infusion
Counts from 04:00
Asher has really kicked up the whining a notch and basically, whenever a nurse is anywhere near him, he whines about it. Last night, everytime a nurse was in here to do something (lines, diaper, blood pressure) Asher would whine 'daddy, daddy, hold my hand, daddy daddy'. Not sure what triggered the start of that behavior again.
Asher took his oral Acyclovir last night in a syringe mixed with Cherry. That wasn't how we wanted to do it, but Asher squirted it in and then drank a little water to wash it down. This morning, he did another dose with the powder mixed in about 5 mL of milk and that wasn't a problem. So, Acyclovir and milk is probably a good combo.
Also, last night, Asher ate 5 mini-ravioli and 1 meatball from a Chef-Boy-R-Dee can that I brought from home. He kept it down without gagging. I saved the rest of the can, so I'll try and give him some more of it today, maybe he'll eat later after his TPN stops at 9am.
The night nurse brought some oral zofran to have on-hand if there was any nausea, but we didn't use it last night and it got disposed of this morning.
Asher's had 3 messy diapers during the night and peed quite a bit. When he's awake, he's still be consistently using the urinal as Steph has mentioned a couple of times.
Today, there really shouldn't be any surprises. I noticed he has some petekei under his left eye, which showed up yesterday a.m., which is usually an indication of low platelets, so we'll see when counts come back. He'll be on Normal Saline for fluids today and again, they asked me to see if he could drink. For the most part, it's all the same stuff that Steph has talked about for the last few days.
Right away when Asher woke up today (around 9am) he looked at me and asked to play a game on the TV - spongebob. So, off to play spongebob battle for bikini bottom PS2 game.
-- update 3:30 --
Asher is choosing not to participate with anyone today.
PT, speech, Psychologist all were basically ignored by Asher, and he even took to hiding under his superman blanket during one visit. Even the NP, who was in earlier this morning couldn't get Asher to play frogs & lizards with her. When PT was in here, I even tried to "leave" for a few minutes to see if he was being 'shy' for my benefit, but it didn't matter. As always, PT said he looks really good and she has no concerns for him as we were able to get him out of bed at least standing and walking.
A new speech lady came in that he had never seen before and she tried really hard to engage him, or make him laugh, or at least talk. I did warn her that he's used to her collegue and that it takes him days to warm up to someone, and in a few minutes she decided that I was right and left.
The psychologist who administered all of our pre-transplant tests "just stopped by" and tried to just talk to Asher for a few minutes, but he buried his head in the pillow. She tried just about all of her bag of tricks to get him to engage, but she saw it was not worth it after a while. After she left, I could see her go over to his chart and write some notes. I suspect she was writing some follow-up notes on his current mental state. When I gave her to 20 second version of how people were using the 'H' word so much, she seemed to understand, and seemed to empathize with the fact that he must be getting tired of being stuck in this small room.
at 3:30, Asher just asked for his favorite child life lady to come in to see him. He has said he doesn't want the other ladies to come, just his favorite one. He's going to trade some of his tickets in for a toy. When she walked in, he was being pretty shy, but after a few minutes of playing, now has started to play with her. He seems to be having a good time with his Elmo toy (from a nurse) and his two lizards.
Asher looks really tired and will probably fall asleep soon.
-- Update 17:00 --
Not remembering if it's been mentioned in the blog before, but I just noticed that Asher really looks like he has a sun tan. Almost his whole head / arms / legs look brown. His face isn't as dark, but you really can tell when he turns his head and you look at him from the back when the shade is up. He really looks like he has a tan. Will be interesting if it turns out to be permanent, cuz I think I remember them saying it's permanent on some kids and not on others.
Posted by Scott in
Chemo Round 6 & Transplant, Counts, on Sunday, March 25. 2007 at
Day 12 post stem cell infusion
Asher's counts appear to have stabilized today, if you can go by one day as an indication of anything.
Counts from 4:30
Asher's ANC didn't go down hardly at all since yesterday. Hopefully that's an indication that his body is going to take over and the neupogen isn't artificially propping him up.
Asher's pretty tired still today after waking up around 8:30 am. He is yawning often. He was complaining of pain during the night, so we pushed his button 3 or 4 times. (Mommy wants to make sure if it is tummy pain you ask for the nausea med that is PRN (0.5 ativan) instead of pushing the morphine.) He seems to be okay now that he's up.
Also, Asher picked up this cough last night while he was getting platelets. It isn't very often, but it's still there today. There is less blood in his nose, so hopefully the raw spot up there is healing itself over.
Today, I think we'll take it easy and play video games and watch TV. depends on how he feels as the day continues.
My sweet little guy is sleeping. He stayed awake long enough to see me come back and tell me about a few new things here and watch a little TV (I notice he is feeling more comfortable changing the TV station with the remote all by himself). He is coughing; he says it doesn't hurt. All of his eyelashes are gone now but he looks really good. I may squeeze in a nap with him now. I was able to get an afternoon nap Friday afternoon with the girls and then last night I got 9 1/2 hour of sleep with only one bathroom break around 4am (that's a pregnancy record). So....I feel a lot better this morning after 3 nights at home and ready for the week ahead. I sure hope we can bring Asher home next weekend.
Posted by Scott in
Chemo Round 6 & Transplant, Counts, on Saturday, March 24. 2007 at
Day 11 post stem cell infusion
Asher continues to not have any fevers and he continues to heal up.
Albumin Serum 1.8
Asher probably will get platelets later on today, depending on if the Dr's want to do it tonight or in the morning. As of this writing, they haven't done rounds on Asher yet to decide.
Everything else, according to the nurse, looks really good.
-- Update 21:00 --
I'll try and recap the day as best I can.
At about 9:30, we got Asher up for the day and proceeded to give him a shower and a dressing change. Yesterday, Steph and I had figured that this would be a good day for me to head home for the day to spend time with her and the girls (as it had been 21 days since the girls saw mom and dad together) and have someone sit with Asher in the hospital. At about 10am, Grandma Eunice and Grandpa Jerry came by the hospital. Initially, I was really hesitant to leave Asher for the day. Mainly because of the nurse we were assigned. Neither Steph nor I really cared for this nurse, but ultimately, it ended up working well and I got some high praise remarks from Grandma/Grandpa when I returned. It appears that the nurse handled things very well, was prompt, and very thorough and did everything I had requested prior to leaving. It sounds like the same nurse is back on Sunday, so I bet we'll have that same person again.
After teaching Grandma and Grandpa the ins and outs of being in a transplant room, I headed home, but was sure to check in every couple of hours to see how things were going. Ultimately, things turned out okay, but there were a couple of rough patches.
With Asher's platelets so low, and having his morphine discontinued, Steph figured he would be tired today and having withdrawal symptoms from his morphine, and sure enough, Asher conked out shortly after lunchtime. When he woke up, he was pretty upset. We were able to get his button pushed twice, giving him a short burst of morphine and that seemed to do the trick and he played pretty good the rest of the afternoon. I had actually forgotten to mention the PCA button and thankfully the nurse was able to come in and show them how to push it.
During the middle of day, the nurse noticed that Asher had a blood in his runny nose, which he had been having for a couple of days. With his platelets at 22,000 to begin the day, he decided it would be a good idea to call the doctor and see about getting the platelets today instead of tomorrow like the doctor had initially planned. The platelets were hung around 5:30-6:00ish and infused over about 90 minutes after Asher had been premedicated with Tylenol.
When I came back to the hospital, the day nurse told me that Asher had started coughing during the infusion of the platelets. I talked to the night nurse about this and she indicated that really the only reason kids had this reaction was that if it was an allergic reaction. To make sure didn't get worse, she gave Asher a dose of hydroxizine, which has antihistimine properties. Asher only caughed once after he got the hydroxizine, so something worked. I remember that kids can sometimes have a reaction to platelets from certain donors but not others.
When I walked into the room, Asher immediately gave me the update on his hot dog that had been ordered from the cafeteria. Apparently, they had forgotten to give him mayo. Over the next hour, he kept asking me to go downstairs and get him mayo. I told him I'd go and get it if he'd take a bite, but he didn't want to, so I didn't. I didn't really think it was safe to get mayo from the community dispenser anyway...
Also, I showed Asher one the things I had brought from home per his request. I brought Spaghetti-o's with meatballs. After talking to mommy around 7:45pm, he asked to eat them about 8pm and one of our hospital-friends Suzie was able to get one of the kitchen people to open the can. Asher actually ate some of them too! He ate one meatball and about 10-15 circles of noodles. He washed it down with a single drink of water. Not bad for a "first meal" Now the key may have been the talk with mommy 15 minutes prior....as she has told Asher to "take a few bites and drinks" and "do the best you can" because "if you eat you can go home much sooner." So, she's thrilled he is eating!!! Yeah!
Asher was pretty exhausted, I could see, from playing with Grandma and Grandpa and he just crashed now at 9:00 after watching some shows on Disney Channel. It sounds like they played with most of the toys in the room and made a bunch of balloon figures out of the long 'balloon animal balloons' that we have here. Also, Child life came by with a CARS balloon. From what I heard, Tigger and another character were around the hospital and they peeked in the window at Asher from the anteroom, but he was sleeping. Asher wasn't really interested in playing with me when I got back and he just wanted to talk, sit by me for a few minutes, and watch his TV shows.
Here's what's going on with the medicine at the moment:
The ativan, hydroxizine, morphine, narcan has been stopped
the zosyn will be stopped sunday
This leaves Asher just on the three antibiotics (flagyl for the cdiff, and Linezolid for the enterococci, and acyclovir) and one antiemetic (zofran). He's still on the Zofran, but the doctors want to discontinue that. I think I'll talk to her tomorrow and ask that it stay a couple of more days, depending on how he's feeling. He's come off of so many meds all at once that we're expecting that he'll start to have some small withdrawal and we'd rather not re-introduce nausea into the picture, as the antibiotic may cause some nausea.
Asher had one medium sized poop today, and is keeping up with his intake of fluids.
Before bed here, I put the room back to it's normal configuration. I had moved things around yesterday to do some cleaning and arranging and tried a new configuration with the bed over by the front wall and the trash can. To make it work, I basically had to sleep on the couch backwards and that didn't work very well, so I'll go back to the way that's actually more comfortable. I got one of those yellow-eggcrate-foam-mattress-cover-things to fold in half on top of the couch for this stay and it does make a difference and makes this couch a little bit more comfortable. Thankfully, I am still able to get a good amount of sleep here at the hospital and will be trying to stay at night as much as possible I think in the coming week, assuming Steph and I can work out the logistics of coming and going. Once I know what a noise is, I can pretty much sleep through anything.
Anyway, Asher will hopefully get a good platelet boost for Sunday and should have some more energy. It will be interesting to see if he's cranky from being off all of these medicines so fast.
Posted by Scott in
Chemo Round 6 & Transplant, Counts, on Friday, March 23. 2007 at
Day 10 post stem cell infusion
Asher woke up very Smiley today. For most of the morning, he was in a good mood and was even up and playing on the floor with me for a couple of hours without complaining of leg pain.
Counts 6:00 DIC Panel
Red Cell Fragments NONE SEEN
This morning, they TPA'd the white lumen because they couldn't get it to draw. Asher got a dressing change and a shower around 10am.
He appears to finally be clearing up the Cdiff because his stools are a lot less. Just a little bit a couple of times today. The doctor did make a comment that it should start to heal itself now that his counts are coming in.
Pain control is going down on the morphine to 0.1 continuous today and want to eliminate it entirely tomorrow but leave the demand dose (PCA) there in case he needs a little boost. he only pushed the button once yesterday (and that was when mommy did it before his shower and dressing change) and we've pressed it twice today.
albumin low, so they're giving him some today just as a push in his IV.
Asher is finally showing interest in food, and they are taking his TPN down to 75% of his daily calories and run 18 hours a day. Hopefully this will encourage him to eat.
decrease ativan by half
look to lessen the hydroxizine as well.
16.9 weight at 6am
-- Update 15:00 --
Asher fell asleep at around 2:30 pm after playing pretty hard until then. We had decided to clean the room up and make it more livable after accumulating stuff over the time we've been here. so, the room is rearranged a little bit and once Asher wakes up, we'll either play on the floor some more, or we'll play playstation.
-- Update 17:00 --
Talked to the NP about a few things we had questions about.
Asher's albumin is low because by default they don't put it in the TPN anymore. the pharmacy believes it could interact negatively with some of the drugs in the hospital, so they only put it in with kids who need it. Basically because Asher just wasn't getting enough of it because he's on TPN.
The magic number for restarting Neupogen is ANC below 1000. And that really is anytime over the next 6 months or so. Anytime Asher is in clinic and has an ANC below 1000, if that happens, they'll give him a boost of neupogen.
Saturday the Zosyn will be discontinued and they'll also discontinue the hydroxizine and change it to only as needed (PRN).
-- Update 23:00 --
Asher played hard tonight after he woke up from his nap. He slept about 3.5 hours and woke ready to play. He asked for a hot dog for dinner, but didn't eat any of it. later on, he asked for noodles that go round and round. After thinking a while, I figured out that he wanted spaghetti-os. All I had was chicken noodle, so I tried to get him to taste a few noodles, but he wasn't interested.
We played playstation most of the night and at about 10:30 he got tired and fell asleep.
Asher had no fevers today and contintinues to look really good.
Posted by Scott in
Chemo Round 6 & Transplant, Counts, on Monday, March 12. 2007 at
On the second day of rest, Asher will be doing pretty much just that - resting.
We got his morning labs back and his liver has already started to recover. The doctor is feeling confident that it's just the chemo drugs and not anything else.
The only new concern is that Asher's thrown up twice, Bile both times. Last night at 12:30 and this morning at 9:15am. Very small bit of liquid and this morning's had a bit of sluff in it, so the mucositis probably has set in on his stomach.
Counts from 04:30
Uric acid 1.6
Alkaline Phosphatase 163
Notes from the Doctor this morning. There may be more later on in the day.
Asher's AST/ALT has decreased, so it appears his liver is recovering itself.
Infusion of cells tomorrow is targeted around 10am. She's not real concerned about me going to work and back from the hospital, but if I show any 'different' signs that I might have picked something up, that I shouldn't come. I'll probably lock myself in my office pretty much over the next few weeks.
On a side note, I just received word from our doctor that the Head Start III protocol that Asher participated in, has been suspended due to the toxicity observed of the chemotherapy drugs given. They're revisiting the risk/reward of the dosages of the drugs and will reopen once they have it adjusted. All existing kids continue on their path apparently if they've already started. Thankfully we're beyond that and just have the 'standard' autologous stem cell transplant left!
Steph is coming to the hospital today to switch off and she'll be staying most of the time from this point on, most probably. I'll be returning to work and be at home over the next couple of weeks dealing with some home warranty issues.
Asher wanted to eat my salad that I had for lunch...he kept saying, "That looks yummy." But, I knew he couldn't have salad. He wanted to order food, so he asked for chicken nuggets and cheeseburger from room service. In the mean time he ate about 4 shortbread girl scout cookies. We all know PCH food isn't the same as McD's and when it did arrive he took one look and made a gagging noise and said he wanted Daddy to bring it. I said he couldn't and then we cuddled and Asher fell asleep on me around 1pm and slept from 1pm till 2pm when a nurse came in to draw blood to check his counts. She said they need to check levels in case he needs blood before his transplant tomorrow. She said maybe if the hemoglobin goes below 8.0 he will need blood tonight....but it was only 8.4. The transplant NP just came in and said maybe the transplant doctor will change her mind and give blood overnight or it will have to wait till after transplant later tomorrow, can't have it at the same time.
I tried to do mouth care with Asher (after 'forgetting' to do it 2 times earlier) and after the first swish and spit (well, skipping the salt water and going right to the biotene) he threw up, a bunch of bile and stuff (mucositis stuff). Right when he was done he said, "I need hotdogs. That would make me very happy." So, I ordered them for him from room service, and now he's talking and sitting up and happy (he said he wants to shower after he eats)....he was pretty out of it all day, although did play Zingo, playdoh, gameboy and sit with me and watch TV.
Anyway...come to find out the Zofran stopped sometime yesterday and Scott didn't know this (nor did I today till just now). That would explain why he is now so sick to his stomach and throwing up, so it is added back q4. I guess they didn't do it on purpose (although that is coming from a nurse who is guessing), just didn't put it back on orders once the chemo finished. I guess most kids don't continue Zofran after chemo is done but we have learned (through many rounds and months) that Asher needs it all the way till his counts start to go back up. So...I feel bad we didn't notice it but hopefully now Asher can feel better!
Will update a bit later when Asher is asleep, because I talked to two ladies today about what will happen for the transplant tomorrow, even saw photos of what will happen. Nice to know this ahead of time, and I look forward to taking my own photos.
So Asher ate about 1/4 of his hot dog with ketchup and he drank about 3 oz of 2% milk. Then I noticed he was getting really tired and it was 7:40 so I called Scott to find out when his last shower/dressing change was. I assumed it was at 3:30am and 9:30am prior, however, it was actually 9:30pm Sunday night, not today at all. But, Asher was so tired he was watching a movie and fell asleep and the night nurse didn't come in until 8:25pm to tell me to get him up and shower him so he can have his dressing change. I was not happy, especially when it was being made a big deal now when it wasn't at 3:30am when he was supposed to be up and showering (due to the Thiotepa excreeting for at least 36 hours after it finished, which was 4pm Saturday). But, I woke him up, showered him and the nurse changed his sheets and then did his dressing change. It was at this time that I realized the "two pieces of tape" on his broviac was not in place, but a "regular" gauze dressing was in place with tape around the ENTIRE edge (5+ inches square). Well, in taking it off the nurse pulled skin off with it in at least two spots that I saw, both drawing blood. So, now he has wounds that I am going to worry about as his counts drop this week and nurses are continually accessing during dressing change. Even when I told tonight's nurse (which I just found out was the same nurse as last night) that the tape wasn't supposed to be in the same place every dressing change (every 6 hours until this morning and then every 24 hours again) she still put the tape over the red/raw skin in the exact same place....arg....anyway....I'm frustrated....I feel like I can't trust what is being told to me. You'd think they have done this before and I wouldn't get so many different stories about one part of last week's chemo. I guess I shake it off because tomorrow is a big day.
It is now 10pm and Asher is still awake after getting woke up for a shower....he's exhausted (only 1 hour nap today and then 1/2 hour sleep before his shower) and hungry (he asked for a hot dog which I couldn't give him and he wouldn't eat a lunchable, although he did drink about 1 oz of milk). Since he was still awake I did another mouth care with him (since he threw up the only two that were attempted earlier today). he did the biotene, swish and spit, and then the nystatin, swish and swallow and when he was done he said, "I like doing my mouth care now." No kidding. Wow. What a kid!
Tonight he is getting two antinausea meds and they will draw blood around 2am to check hemoglobin and if it is lower than 8.0 he will get a unit of blood at 5am to be done by 8am.
Posted by Scott in
Chemo Round 6 & Transplant, Counts, on Sunday, March 11. 2007 at
Today is a day of Rest. Appropriate for it being a Sunday. There are no more chemical medications, just mouthcare and daily meds.
Over the last couple of times of giving meds, Asher hasn't been able to swallow them without gagging and twice has gagged back up the meds. So, to make sure he's getting the appropriate coverage, the doctor is converting the meds to IV form. From now on, Asher will be getting Protonix IV instead of Lansoprazole, and Acyclovir in IV form.
Showers have been good still, with a dressing change last night at 9:30, shower at 3:30am, shower at 9:30am.
Counts from 03-11-2007 04:00
Potassium 3.6 [3.6-5.2 mmol/L]
Creatinine 0.34 [0.1-0.8 mg/dL]
AST/SGOT 286 [15-37 U/L]
ALT/SGPT 365 [30-65 U/L]
Alkaline Phosphatase 168 [146-333 U/L]
Bilirubin Total 0.4 [0.0-1.0 mg/dL]
The doctor came in today with a single concern. Asher's Liver levels AST/ALT. They are higher than when they last drew them, but still far from being 'critical', with critical levels being about 10x what the are today.
She told me that there really are 3 causes for impact to the liver under these circumstances.
3) rejection of marrow ( but not applicable to Asher since it's autologous)
She thinks that most likely it's the combination of Chemo that Asher has gotten and they've seen it before in kids like this. Alternatively, it could have been the fluconozol which was stopped on Friday.
Because Asher is not running a fever, and they've already run bacterial blood tests they do not believe it's an infection of any kinds.
They are going to re-draw blood at 4am and see what the level is. With the chemo stopped, the liver could take up to 5 days to recover down to a normal level.
If the AST/ALT gets into the multiple-thousands, you start to worry about permanent damage, but not really before.
If you are to look at the Alkaline Phosphatase level in conjunction with the Bilirubin Total, you can see that these two numbers are perfectly within normal range. This tells you that the Liver is healthy enough to have not impacted the Gall Bladder which is next in line in the body. If the liver was unhealthy, the Gall bladder would be imnpacted and those two levels would go up.
If necessary, a few days from now, they'll screen Asher again for blood viruses that may cause increased levels.
For arguments sake, if it doesn't get better, the option is there to do a liver biopsy. They stick a little needle/probe in him to scrape a few cells from the liver to analyze under a microscope to determine what's going on in there. This can be done by a radiologist or a surgeon with the procedure guided either by ultrasound or CT.
The only thing to help it now, is just to be careful with the medications given so that no more are given that have liver impact and to avoid infection. All of the IV meds are processed by the kidneys and not in the liver, so we should be clean going forward.
As for today, Asher and I successfully fixed his Crane game that had broken after 2 hours of playing with it. We pretty much took the whole thing apart, clamped the metal puller cable back into place, and then screwed it back together. Asher took out and screwed in about every other screw and he really enjoyed participating. After we got it all done, he called mommy and asked her to bring candy so that he could play with it some more. The suckers that we have are a little too big for it and you can only play now if there's 3-4 suckers in there at any given time. He is still enjoying it in the meantime.
Last night and into this morning, we spent time putting up glow-in-the-dark planets and stickers that were sent to Asher by some friends that I work with. Asher really loves them, but keeps asking for more glow-in-the-dark stickers to put up. I was surprised that the nurse gave us full permission to put up anything on the walls that we need, but she said "This is your home, do whatever you need to the walls, we'll clean it off".
Asher did eat and drink a little this morning. He had about a third of a carton of strawberry/banana yogurt, a few bites of cream cheese bagle, and 6 oz of Whole milk. He doesn't seem to be interested in too much more, but we'll keep ordering him stuff to see what he will eat.
Posted by Scott in
Chemo Round 6 & Transplant, Counts, on Sunday, March 11. 2007 at
Asher's last chemo is close to finishing up. Today is Asher's last dose of Chemo, Thiotepa and Etoposide. This is the last chemo of Head Start III, the last chemo of this whole protocol. He's done.
To me, the last 9 months have gone so fast and I can't believe all that Asher has been through. I am so proud of him, especially, as I look at him now and see him bouncing on the bed as though none of this is even happening.
So far, this final phase, Asher has had three days of Carboplatin, and three days of Thiotepa and Etoposide. He still shows no ill effects from any of these medications and is as active as ever. The showers appear to have limited the skin breakdown, and Asher's dressing site shows little to no sign of redness. There is no mucositis to date, and zero nausea. The only concern is that Asher has chosen to limit his eating. Today, he's had 10 grapes, a bag of mini-m&ms, and two dum-dum suckers. At least it's something.
To celebrate his last Chemo, I picked up a mini "Skill Crane Game" called "The Claw". At first, it didn't look to me as though it would work, but the minute that Asher saw what it did, he was hooked! Asher appears to really enjoy all electronic gizmos, especially those that move and make noise, etc. I was able to get a bag of dum-dum suckers from child-life and we've spent at least an hour today trying to get the crane to pick up the suckers. I think it was meant for slightly smaller candy, but it works nonetheless. Asher's having a blast with it.
Today saw us giving Asher a shower at 3:30 am, 9:30 am, and again now at 3:30 pm. The schedule yesterday skewed just enough to allow us to only wake him up once during the night and he seems to be going strong on the sleep that he had. (11:30pm-3:30am, 4am-9am)
He's as talkative as ever today, speaking with Child life, the nurses, and he even played baseball with Dr. Dana. Up to this point, he hadn't even ever said a word to her I don't think.
The doctor is amazingly pleased with Asher's progress. She used the word "unbelievable", but I don't think I'll ever be surprised again with what Asher can accomplish. She has no concerns.
Counts from 04:00
From about 11-12:30, I took a break from the hospital and ran a couple of errands with the girls (who I hadn't seen since this past Sunday a.m. when Asher was admitted) while Steph played and cuddled with Asher. When I asked him what they did, he said "Cuddling, and smooches! (and then he made some kissing gestures with his mouth)".
This afternoon, I washed Asher's personal blanket in the hospital wash machine. On a side note, the washer on the 5th floor has been broken for 8 weeks and there is only one wash machine supplied for all of the parents right now, down in the family center for the PICU. If anyone out there has any pull with a company who would be willing to donate a couple of wash machines and dryers to replace these old ones they have here, please get in touch with the hospital! I'm happy to put you in touch with the lady who's responsible (Ellen).
Tonight, we're just finishing up the Etoposide, taking another shower, and probably playing some playstation. I'll continue to have Asher order food for himself in hopes that he'll eat some of it. He ordered food himself both times today.
Posted by Scott in
Chemo Round 6 & Transplant, Counts, Quotes / Inspiration, on Friday, March 9. 2007 at
The first three showers, including those at midnight and 6am went like a breeze. As you'd expect, Asher was pretty irritated that we woke him up to shower, but he didn't fuss too much once we got him in there. He's a good kid!
Asher awoke today in a very good mood. he has been very playful with the nurse today (new to him) and even reacted pretty positively to the doctors when they were in here. There really is no change of events today. The doctors are very happy with his progress and his lack of nausea. He's even eating more than they expected I think.
Today for Breakfast, Asher had a container of Dole Peaches, 1/2 of an egg & cheese omelet and a few bites of pancake. We'll keep ordering him food throughout the day to see if he'll continue eating.
He had some problem with his oral meds today and almost gagged on them a couple of times. We're going to have to find another way to give them instead of just squirting them in like we've been doing if he has a problem. He has been able to keep them all down so far though.
Asher had his first shower around 10:30 and he enjoyed squirting the water around the shower. He does still freak out a little bit when I get the back of his head wet.
The doctors had one little concern this morning, surrounding his Liver function. Apparently, the ALT/AST that measures his liver function is slightly higher than upon admission. Either it's the chemo that's doing it, or the fluconosil. They're going to keep an eye on it, and since his Chemo is done Saturday, they think it'll be back down on sunday, and if not, by the middle of next week since he's got a few days of rest coming up. No counts were drawn today.
The chemo went very well today. The thiotepa started at about noon and ended around 3pm. Asher had his shower around 3:30. The etoposide started shortly after that. Asher continues to show no ill effects from the Chemo and was as active as ever today.
He played very well with the Physical therapist, the nurse, child life, and just about everyone who came in today. He showed zero signs of being shy like he can sometimes do.
Asher hasn't eaten anything since breakfast and has refused any of the food that I've ordered for him from the cafeteria or have produced from our cabinets.
His oral meds continue to be harder to take each time. He has almost gagged on a couple tonight. At some point, the nurses say we can switch one or more of them to IV based, but they try not to because they are all a little bit hard on the organs to process and they'd rather keep it out as long as possible.
I did get a recap of his chemistries from today, but no blood counts (cbc)
Uric Acid 2.3
BUN/Creatinine Ratio 45
Those last two numbers are the ones that are higher than when we came in and the one that doctors are going to be watching.
Tonight, we'll have another shower around 9:30pm, then 3:30am, and then tomorrow morning at 9:30 am. We've planned it now so that we only have to wake him up once tonight. Asher took a nap from 4pm-7:30, so he won't be going to be anytime soon!
A quote for today:
They say that time changes things, but you actually have to change them yourself. - Andy Warhol
Posted by Scott in
Chemo Round 6 & Transplant, Counts, on Thursday, March 8. 2007 at
Day -5 until Cell infusion
Asher woke up at about 9am today in a very good mood, shortly before all of the people started to come in to see him. The doctors came in first, followed by nutrition, then child life. He had been awoken at 6am to get his weight, but he quickly went back to sleep.
Here's the schedule of events for today
1130-1300 sometime - Physical Therapy
1300ish - Start of Thiotepa
1700ish - When Thiotepa is done, start Etoposide VP16 Dose
1930ish - Take first shower and do dressing Change
2400 - Take 2nd Shower
Every 6 hours thereafter, Take a shower, do dressing change, change sheets, change clothes
The doctors currently have no concerns about anything with Asher. I had noticed that Asher started playing with his front lips and front part of his cheeks yesterday and the doctors thought it was just starting to get irritated a little bit beginning the start of mucositis. There are currently no sores in Asher's mouth at all, nor anywhere else.
The doctors are happy with the levels of everything thus far, including Creatine in blood. Asher's platelets are down about 100 since yesterday, and neutrophils are starting to drop, so he's heading toward a lower ANC in the next couple of days. The doctors reminded me that they consider giving him platelets when he hits 20,000.
Counts from 03-08-2007 04:15
BUN/Creatinine Ratio 48
Today, Asher is still eating good. He had about 10 grapes for breakfast along with a cheese omelet and some milk.
Child life is going to be bringing Asher some more play-doh and matchbox cars today. he's been having a really good time playing with his Matchbox Blast and Crash track set that I picked up at Target a couple of days ago. He also has been playing play-doh a lot and has managed to create a blob of play-doh in whatever color you get when you mix red, green, and blue together.
Around lunch time, Asher said he wanted a Lunchable with Turkey. I opened one up and he had a taste of a piece of turkey and another of cheese. He at that point said he didn't want anymore, so it got put away.
Thiotepa started at 13:30 and will run over 3 hours. When that's done, the Etoposide will start. Once the Etoposide is done, we'll give Asher his first shower, 6 hours after the Thiotepa started.
Asher has been playing up a storm. For about an hour today we played pitch/hit with the beach ball and the bat that I got him.
The Thiotepa was done at 16:30. The nurse was going to hang the etoposide right away, but she noticed a problem with the dose with how the pharmacy mixed it. So, after conversation with the doctors, the pharmacy had to re-make the etoposide. In the meantime, we gave Asher his first shower and dressing change at 17:30 and then the Etoposide was started at 18:00 and will run over 3 hours.
With Asher as active as he has been, it's going to be difficult to stop his dressing from falling off. With changing it every 6 hours though, hopefully there will be enough tape there to keep it on while he plays baseball, runs around the room, etc.
Asher also talked to Alexa and Mommy this afternoon and the first thing out of his mouth again was "I can't come home yet, because I'm still hooked up, My medicine isn't finished". I can tell Asher really enjoys telling her about the things that he's been doing/playing with.
Asher's playing happily right now on the playstation.
For dinner, Asher said he didn't want anything to eat. I asked him if he wanted some peanut butter and Jelly on an English muffin and he said yes. so I went and made that. All he did was scrape the jelly off with his finger and eat that. Then, I pulled out the cinnamon Graham cracker sticks and he chowed on those for about 30 minutes. He probably ate 20 of them before he got full. So, for dinner, he had graham crackers and jelly.
The etoposide completed without issue and Asher is finishing the night with mouthcare and is currently resting, watching winnie the pooh, but just about to fall asleep. We'll be up again at midnight and 6am to do the shower, sheets, and dressing changes. Hopefully Asher will be cooperative.
As commentary on Asher's skin post Thiotepa. I haven't noticed any difference in his skin or sweat so far. I am expecting that as time goes on, I'll notice something going on there, but I just haven't yet. it has only been about 8 hours.
Posted by Scott in
Chemo Round 6 & Transplant, on Wednesday, March 7. 2007 at
The normal Asher is back.
Today, Asher woke up in a very happy, normal mood. I immediately got him a turkey lunchable and he chowed it down. I think that the combination of a number of things have led to his normal mood today. First, the steroid is probably out of his system. Second, we've switched to zofran q4 and atarax q6 for nausea and Asher continues to have Zero nausea. Third, there are enough fun things to do now, that I think Asher has accepted that he has to stay for a while.
After we finished our mouthcare, the speech therapist came in and worked with Asher starting at about 10am. They played play-doh and worked some more d/p/b sounds and past/present tense while they were making various animals and things out of play-doh.
Then, the doctors came in and said how happy they were with how things were progressing and were extremely happy that the nausea was under control. There is a concern that Asher has not yet had a bowel movement, but hopefully that will take place today. The upcoming chemo meds are known to cause diarrhea, so they aren't THAT concerned because the situation will relieve itself in the coming days.
After that, the child life lady came in and I had her finish playing play-doh with Asher while I got some work done. All of these time that Asher has played with someone else I think is setting a good precident for him accepting them being him more. It was funny, because when child life came in today and Asked him how he was doing he said "I'm shy" and that's all.
Posted by Scott in
Chemo Round 6 & Transplant, Counts, on Tuesday, March 6. 2007 at
Day -7 until Transplant
This morning, Asher woke up and immediately begin crying and yelling for mommy. This was different then yesterday. He'd yell for mommy to come, and then when I were to tell him that mommy was coming a little bit later after she took his sister to the doctor, he would yell that he didn't want mommy to come. His attitude sounds very similar to what happens when he wakes up from anesthetic. He yells, then gets distracted by TV or something, and then pauses, then yells again.
This morning, it appears to be accompanied by pain in his broviac site and pain in his stomach, over toward the left side. Steph and I guessed yesterday that we though the pain might be pressure related after he gets upset. It does only seem to be there when he's upset from what I've noticed.
We gave Asher 2.5ML of tylenol for the pain, so hopefully that will have some effect.
I ordered him some bacon, eggs, lucky charms, and milk this morning, so we'll see if after he tries to eat he settles down a little bit. The plan is to have child life bring in some playstation games to play on the in-room playstation that's hooked to the TV and maybe they'll even start a sticker chart for 'rewards' when Asher takes his meds, etc. Anything to keep asher's mind off being stuck in the room.
Carboplatin second dose today starts around 10, so hopefully that will go well. there doesn't appear to be any nausea from dose #1, so hopefully that will continue.
I talked to the nutritionist this morning and since Asher really liked the lunchables that the nurse brought him last night, she's going to get us a bunch for Asher's fridge. The kids share a fridge in the antiroom. She also gave me a Food record for the day so that the parent can jot down food so that it's a more accurate measurement than what the nurse ends up with at the end of the day.
So, after I talked to the doctors, they've decided to stop the decadron steroid and instead switch over to hydroxizine (atarax) because decadron is known to cause increased aggitation like Asher is showing. Hopefully the switch will allow asher to return to normal.
Counts from 03-06-2007 05:30
The white blood count is up significantly since yesterday. The doctors believe it's because of the decadron. Steroids can make the wbc peak.
In addition, our longer HTLV test just came back negative, so we know that Asher doesn't have HIV/HTLV or any of those his blood - as we suspected - and similar to what happened prior to stem cell draws after round 1.
Asher is resting comfortably now after he got his hydroxizine and ate his cheese omelet.
Asher continues to have anger/frustration issues. 3-4 times today, Asher was very upset for various reasons. Either the toy we got for him wasn't right, I wasn't there, Steph wasn't there, didn't want his meds, didn't want food, etc. It almost appears as though this anger is partially triggered by hunger when stimulated negatively by other things. All times that it happened today appeared to be at time when Asher hadn't had anything to eat for the few hours prior, from what I can tell.
Going forward, we're going to have to make sure that he gets enough food in him frequently to see if this helps. We have stopped the steroid and have started to use hydroxizine (atarax) instead when requested. We're hoping that the Q4 zofran controls the nausea. Up to this point, there have been no times when I have noticed that Asher is seriously nauseated and not just messing around with us.
The Carboplatin dose today was the same as yesterday because his Creatnine urine clearance came back almost identical to admission. If I remember right, it was 340mg/m^2. They didn't start the chemo till around 12:10pm today.
During his dressing change, around 12:30pm, Asher screamed and hollared because Scott had gone out to make some work calls and run an errand. At least he kept his mask on while he was screaming so the nurse just kept on with the dressing change. After Steph was able to sit in his bed and hold him and rock him and calm him down and he actually took a nap until around 2:15pm then....when he woke up mad again.
Tonight, we're trying again to use the condom catheter to capture all of the urine over a 12 hour period. The first try didn't work out and some urine leaked into Asher's diaper. So, at around 8pm, we were able to put a new bag and condom on secured with some "compound benzoin tincture". At first I was worried that we shouldn't be putting this "glue stuff" around his private areas, but after doing some research I found that this is used to partially treat genital warts, so it must be safe to put down there. Asher doesn't seem to have any problem with it at all, and it appears that 3.5 hours later, everything is still well secured.
Our room here has a Playstation 2 in it. Today, we acquired 3 games from child life, and Steph brought our stash from home. Asher has partially enjoyed playing Monsters Inc. and Scooby doo. Unfortunately, the TV they have in here has brightness issues so it's really hard to play any game that is overly dim (like night scenes). if anyone has a wall-mountable 32" LCD Television they want to donate to this room, I can probably put you in touch with the right people at PCH to make that happen. I'm sure Asher would appreciate it too.
Tonight Asher talked to his sister Alexa on the phone and he pointed to all the toys in his room and told her about them, but it was interesting how their conversation started. He told her, "I can't come home, I'm really hooked up right now," as he pointed to his IV pole. He also said, "I'm getting better though!" Hoping this means he is starting to settle in. He certainly was in a MUCH better mood around 5:30pm - 7:30pm when he had eaten (two turkey/cheese lunchables and 1/2 a hotdog from room service) and had both parents in his room.
Posted by Scott in
Chemo Round 6 & Transplant, Counts, Hospital Stay, on Monday, March 5. 2007 at
Today is the start of chemotherapy Carboplatin, Day -8
Last night was fairly uneventful. We started mouthcare which will be done 4x per day from now on, and started to get Asher used to taking his other mouth meds. Asher didn't have a problem with any of them with the exception of the salt-water that he has to swish with prior to taking any of the others.
At about 4am, Asher woke up while the nurse was taking night labs and was very angry and didn't want to go back to sleep. After about two hours, he fell sound asleep after he was weighed. They'll be weighing him twice per day now, 6am and 6pm. Asher will NOT like being woke up at 6am to be weighed. To make it less painful, I just held him today and he was weighed.
Shortly after Asher was weighed, the nurse came in all concerned. "Asher has gained a lot of weight." I looked at him perplexed. He said, he's 16.8kg now and the nurse wrote down 14.6kg this afternoon. I told him that she must have transposed the numbers because he really was 16.4kg and he kind of looked relieved and went on with his business.
The oral medicines that Asher is taking
Acyclovir - 200MG/5ML - Dose: 160MG - Amount 4ML
anti-viral, throughout day 100.
Sulfamethoxazole (bactrim) w/TMP SUSP - Dose: 50MG - Amount 6.25 ML
stops at day -3. Restart after day 50 if platelets high enough
Lansoprazole Oral 3 MG/ML - Dose: 15MG - Amount 5ML
stomach, could switch to IV protonix
Salt Water - Rinse mouth only
Nystatin - Rinse and Swallow - 5ML
Biotine - Rinse and Spit - 5 ML
Meds for Nausea/Anti-Emetic
Zofran has started q4
Dexamethosone (decadron steroid) has started q6
The speech therapist came by this morning to work with Asher on his 'b' and 'd' sounds and they played a little coloring game, and named animals and things with the letters in various positions. After getting over his initial shyness, Asher did very well with her. She's going to try and stop by a few times a week, depending on how Asher is feeling from the therapy.
About an hour after the speech therapist left, Physical Therapy came. This is the same lady that has been with us the whole time and she remarked how well Asher looked and felt. She checked out his feet, ankles, and had him walk a little bit - noting his progress from when she had saw him before with a walker, etc. She ordered a nice squishy play mat for him to have on the floor if he wants to get down there and play.
For lunch, Asher had a banana and some fruit loops. He had some mt. dew to drink.
For dinner, Asher had the turkey out of a lunchables container, 1.5 bowls of lucky charms, and some milk.
Also, today, Child Life stopped by with some toys for Asher. Transplant kids can only have things new in the package brought into them and they can't share anything with any other patients (so we can't go to the playroom and bring toys into him). So, they brought him two Rescue Rangers, a Car Race Track, play-doh, and some art supplies. Asher was taken with the toys for a good couple of hours this afternoon.
At around 4pm, Asher crashed and took a nap right after taking a second shower. Asher will soon be starting taking baths or showers 4 times a day, so I was very happy to find that he actually seems to like washing himself now. We put him in the shower initially at 2pm and honestly he took to the spray head that the shower has attached to it.
Also, sometime in the afternoon, The nutritionist came in and gave a bone marrow transplant menu and explanation of things. Expect TPN around Day 0 she said. The only big change with the BMT diet is that everything needs to either be cooked to the point of killing bacteria or all things must be pasteurized
at about 4:30 pm, Asher ate some fruit loops. He got some food on his chest and asked to take a shower again to wash them off.
Counts from 03-05-2007 16:00
This evening, after his nap was over at 6pm, Asher got real anxious and demanding. he wanted his mommy. We placed a call to Steph and she came over for a little over two hours. Asher was good while she was here and on her way back home even blew kisses. At about 9:45 pm, Asher had another anxiousness attack. He wanted mommy again, to tell her to come back. Finally, after being talked down and watching a little Baby Einstein, he fell asleep.
I had a discussion with the nurse last evening about Asher's mood. He said he talked to the doctor about Asher's heightened anxiety. Asher is got pretty upset since his nap tonight and twice now has gone a couple of hours crying and yelling for various things. Unsure if this is just anxiety from admission or anxiety triggered from some of the chemos.