Posted by Steph in
Chemo Round 6 & Transplant, Counts, Infection, on Sunday, March 18. 2007 at
Day 5 post stem cell infusion
Wow, it is two weeks since we admitted Asher for his last round of chemo and stem cell transplant! I keep thinking the days go so slow here, but I guess they are moving along pretty well. To think, we could be halfway there. Maybe in two weeks we'll be at home!
Asher woke at 2:45 and vomitted and the nurse was changing his yucky diaper. About 1-2 hours prior to this, Asher was mumbling in his sleep and moving around in his bed a lot, so I'll bet he was in pain/discomfort from this nasty C.diff. That's about all I know happened last night. Asher's still sleeping right now.
weight at 6:45 16.2kg
10:00 - More mumbling in his sleep, then more vomitting, then more diahrea, then a shower, clean sheets, and back in bed, just feeling blah! Has the TV on now, vomitted again, and got his neupogen shot (he barely cringed).
14:15 - transplant doctor stopped in and said Asher has some cells in the background - Asher's skin coloring is looking much better - skin owie is looking really good (she said there would be signs of healing before we'd see cells) - Asher got a couple of boluses to try to replace all the lost fluid with this C.diff (Clostridium Difficile) - she really wants to stop the vomitting and has increased the ativan to 1.0 and eventually will replace the zofran with the ativan because he seems to get a 2 hour window of play-time in after he gets the ativan....seems to be more effective than the zofran at this point, however she doesn't want to 'take away' from Asher at this point, so the three will all rotate every 2 hours as they started last night - she also wants to try Narcan (if I understood her right) to try to nip the nausea in the butt, she thinks the morphine can also bother the tummy - she said all the drugs are making him sleepy - she is off now for two weeks so we'll have another doctor
14:30 - More diahrea but no vomitting, did dressing change
15:00 - more vomitting, green again
16:30 - fever is back 38.5 - do cultures
17:30 - give Tylenol (Asher took it while sleeping, barely waking up)
18:00 - weight and change diaper (diahrea contained within diaper)
18:45 - another diaper (diahrea contained within diaper again)
19:00 - 38.9 (102) temp
19:05 - Asher was stirring in bed and picked his head up enough to look out the window and said, "It's dark out." I said, "Yes, the sun went down. It is okay if you sleep."
Asher is very sleepy. I think he has been up a max. of 3 hours today and that's laying in bed, or short shower. One point I got him almost sitting up with pillows behind him and we played a few things in bed (the fun little things from TRU that I picked up yesterday). He just wants to lay or sleep or have TV on mostly. Doesn't surprise me since his fever is back; he's always like this with a fever.
I had to have the night nurse do another dressing change because the one from earlier was falling completely off.
Asher's night nurse called to talk to the transplant doctor and she called and asked for the hospital pediatrician on-call to come take a look at Asher. I have met her before, last fall. They are worried about dehydration, loss of electrolytes, his high pulse, and low blood pressure. So far I know he will get some potassium over 4 hours and more boluses/saline/fluids (1 right away and then they are going to start adding up what he loses in diahrea in 4 hours and give it back to him), and they are waiting for the CBC to come back from the blood they drew about 45 minutes ago. If he vomits any amount of blood (he has had two bits of blood come up) he will get platelets whether they are below 20 or not. Right now Asher is stable and they are just keeping a close eye on him.
21:00 vomit, diahrea, did mouth care (salt water very fast, then good swish and spit with biotene, and swish and swallow with nystatin)
21:15 vomit then went to sleep
21:30 tylenol while laying down and still sleeping
22:30 38.6 temp
Posted by Steph in
Chemo Round 6 & Transplant, Counts, Infection, on Saturday, March 17. 2007 at
Day 4 post stem cell infusion
It has been a busy morning to begin. Just before 2am I woke to Asher wanting to vomit, again, it was green and he had to work really hard to get the little bit out that came out. All diapers were just urine and looked fine. Then at 6am I woke again to Asher vomitting. Same thing, green, and he was just working so hard to get it out. Then I went to take my shower and get breakfast and the moment I walked back in the door he pointed to his mouth, wanting to vomit. Again, same thing, same amount, green....and when he was done he said, "I want the nurse to change my diaper." It was about 7am by this point and I called her in to ask for a little ativan....just do something to stop his vomitting. And then I told her, "Ready for your stool sample?" It was pure liquid and all over the chuck (thick padding we put right under his butt for when diapers leak like that) and his legs and even feet.... The transplant doctor wanted to make sure he doesn't have rotovirus (oh geez, there's that word again) or something like that. I'm beginning to think he just might have rotovirus again because of the awful odor and the vomitting, but I don't know. I'll be asking the doc if the antibiotics can cause this green bile since it started the day his antibiotics started (yesterday).
So, I took him into the shower to clean him off, with a little unwillingness on Asher's part. His skin still really hurts and now this morning he keeps saying, "I'm red!"
Asher's temp was 38.2 at 6am. The last Tylenol dose was at 8:30pm or so last night. He slept pretty well except for the interruptions to vomit.
He just did his mouth care, two of them, biotene (swish and spit) and nystatin (swish and swallow) without much complaint. He even asked for vaseline instead of being upset I was putting it on his lips. He's still awake, too, and watching TV. Maybe he can get in some playing today.
wbc 0.1 (4-12)
rbc 3.03 (4-5.3)
hemoglobin 9.1 (11.5-14.5)
hematocrit 25.7 (33-43)
platelets 54 (140-450)
rotavirus antigen negative
8:30 temp = 37.8
Asher was up from 6:00 until about noon today! Playing with balloons in bed and Sims2 with me and watching TV. He's been sleeping for about an hour.
Childlife brought paint and he's going to paints his window later today.
12:00 temp = 37.6
12:45 another explosion in his diaper, going to finally try to give him Immodium when he wakes up
13:25 wake from sleep to vomit, but not green anymore, normal bile/flem color
Transplant doctor in to see Asher and she said he looks a lot better today than yesterday. Skin is looking better and his mouth looks really good (I thought so too), still some sores there along the gums, but he is using less morphine today than yesterday and talking more. She expects his mouth to look even better closer to Monday. Nothing has grown in the cultures, but continuing the antibiotics for now.
Scott is coming to see Asher in a bit
Asher vomitted again shortly after Scott got here, around 2:30pm and then again at 3:30pm, it was yellow bile and flem. Poor guy. I held off on the Immodium and will try it before bed.
Asher handled his dressing change pretty well; again, no tape.
Scott and Asher had a good visit....at first Asher didn't want to get up out of bed but around 5pm he got up and Scott and he played and I went out for a drive. The thermometer on the SUV said it was 98-100 degrees outside between 5pm-6pm. I hadn't even realized it was that warm out. Was nice to get out, even for two hours. I went to Toys R Us and spent $14 on three activities for Asher and me to do the next few days.
When I got back I found painting on the window in the room. Asher said, "Daddy wrote my name."
I'm hoping to get Asher to take his Immodium here and then do mouth care and then bed soon.
Asher threw up just as I finished typing my last entry and since I thought he was done I thought I might as well give the Immodium....but he threw that up too, and after that he pulled his sheet back and said, "I already went, see?" That was in response to my telling him we had to stop his diahrea! I think this may have been the biggest explosion of them all. Guess I'm getting good at cleaing the mess up. Sure does wear me out. As I was washing Asher, as he lay in bed, he looked at me with a big smile and said, "I love you, Mom." Awe, he knew I was getting frustrated with all his throwing up and pooping because I was hoping by now we could have gotten it under control or even stopped. Before that he actually said, "Sorry," and then I got tears in my eyes. I told him it wasn't his fault. I know I am just very tired and then more moody because of it. Out of the last five nights, I got one good night of sleep (Thursday night). It was amazing though, afterwards, how spirited and happy and silly Asher was being. I can tell he feels so much better once it is out. I have to say I was a bit bummed he didn't give Scott at least one mess to clean up....when talking to Scott about it this afternoon he just said to me, "I rarely change a diaper; the nurses just did it." I, at least, have stopped getting up during the night to change Asher's diapers....I used to do it but I see the night nurses are just used to doing it and now Asher lets them too. He used to cry for me to do it (back in October when I was with him a lot).
Asher did his mouth care and I have stuck to my approval (and the transplant doctor understanding) that I would only 'force' Asher to do the Biotene and Nystatin and since he does both, properly, even swallowing the Nystatin, I agree not to do the two yucky ones and tonight he even said that after swallowing the yellow one (nystatin)...."Not the two yucky ones." Nope, just the two you do okay with buddy.
Anyway....at least I can go to sleep tonight knowing Asher has been without fevers all day today. After yesterday I thought for sure they were going to hang around for awhile, but looks like I was wrong, so far. Asher's already asleep for the night.
I successfully woke Asher up so he could take his Immodium, but he threw up first. Then I gave him a choice, either I use a little syringe to squirt the medicine into his mouth or he could drink it from a medicine cup....he chose to sit back up and drink it from the medicine cup....I told him deep breath and lay back down....so he did....and so far so good.
Asher's night nurse (same as last night) just got off the phone with the transplant doctor and she wants to make sure Asher has an antinausea med every 2 hours....so he will get zofran q6, ativan (0.5 dose) q6, and hydroxyzine q6, so he'll get at least one every 2 hours. I hope this works.
I'm going to sleep now.
The nurse just ran in here 10 minutes ago....the stool sample sent this morning that was negative for rotavirus antigen came back positive for C.diff. So, too bad he just kept down that Immodium; he can't have that with C.diff. They will start a new medicine: metronidazole (Flagyl). She said it will cause nausea....at least he will be getting an antinausea med every 2 hours.
Posted by Steph in
Chemo Round 6 & Transplant, Counts, Infection, on Friday, March 16. 2007 at
Day 3 post stem cell infusion
00:00 37.8 (100)
03:00 38.1 (100.5)
They start cultures at 38.3 (100.9) for transplant kids.
Prior to this morning his temps have not even reached 37; they were usually 36.8.
And, to mention, because I have forgotten, Asher has a little cough. And I mean little. He coughs for about 2 seconds about 5-7 times a day, but the nurse just asked me about it. It started about 2 days ago I think and I seem to notice it more when he is laying down. At first last night I thought he was going to throw up so I would jump up and then realized it was just a little cough.
Counts from 6:00
ANC = 0
Asher's temp is holding steady between 37.8-37.9 since 5am. His blood pressure has been on the low side. He was talking in his sleep some and sat up around 3:30am and told me there was a loud noise in his ear. Weight at 6:30am 16.2kg. He had another explosion in his diaper. He's watching Seaseme Street right now.
Asher did his mouth care this morning, but threw up while we were trying to do it. Bile and flem came up.
Temp = 38.1 at 10:30
Asher got his third neupogen shot at 10:30 and asked that the cotton ball be kept under the bandaide this time.
The nutritionist stopped in and said he will be at 100% TPN with tonight's bag.
Transplant team said Asher is doing well for 'day 3.' The doctor said his mouth looks worse today than it did yesterday. She said you can tell he is trying to do his mouth care and it is helping. She said to expect healing to start next week. She said the fevers, since they aren't spiking, might be from the skin rash and underlying layer (or something like that). Parts of him are very red and hot. If it goes away in the next day or two she said that would most likely mean it was the Paliferim that did it. Also, they expect to see some peeling of his skin, especially at the arm pit and groin, as effects from the Thiotepa chemo. I have to watch to make sure the diaper doesn't irritate the groin area. Asher continues to have diahrea in the morning and she said that is normal and is from the chemo and the morphine probably won't help enough and they will give something else to get it to stop. She said they will send a sample to check for rotovirus (oh, not again) and just be sure there's nothing there. I confirmed again with the transplant doctor that the neupogen is supposed to be given subcutaneously, and she said most definitely. It is more effective this way. She is not afraid of infection through the shot site(s). She said they would go to IV if Asher didn't handle the shots well, but the dose would be doubled then. He is handling them quite well so we'll just keep doing them the most effective way. The transplant doctor also said if Asher's flem gets too thick and he starts to want to spit versus swallow (like he did in chemo round 3) that they have a little thing that can suck it out and that 4-year-olds do know how to use them....she said sometimes it can actually irritate the stomach if he does continue to swallow it and then he'll vomit....so I'll watch for that. She said his cough is probably just from irritation from the mucositis in the throat and they didn't hear any fluid in his lungs.
Asher has pushed his PCA button three times already this morning. The pain lady was just in and increased the continuous dose (0.2 per hour now) and the button dose is now 0.4. Asher just pushed his PCA button and turned over in bed and went to sleep (he's watching TV too). That's all he wants to do.
12:00 Temp = 38.4 (101.1)
12:30 cultures taken
12:40 antibiotics given (Tobramycin & Piperacil/Tazobactam (also called Zosyn))
12:50 oral Tylenol given (Asher fought it but then finally took it and it has stayed down so far)
Temp = 38.9 (102) at 13:15
Temp = 39.1 (102.4) at 13:40
Temp = 38.8 ( 101.8 ) at 15:00
16:30 oral Tylenol (good boy Asher!)
16:30-17:30 platelet infusion
17:00 38.6 (101.5)
17:30 chest xray done (due to cough)
18:00 urine sample taken (due to cringing in pain when he last peed in his urinal)
18:00 sponge bath in bed
18:15 37.8 (100) and blood pressure up 101/64 (been low around 80/34 most of the day)
18:30 16.8kg weight
18:30 chest xray: there is a little dark area behind his heart and the doctor said no pnemonia, but like a mucus plug and he needs to work on respiratory efforts (i.e. blowing on the thing (don't know the name) that he got the day he was admitted to transplant, blowing bubbles, blowing up balloons, etc.)
Asher has had the urge to vomit twice this evening. The most recent time was around 8:30pm when he was asleep and all of a sudden he started throwing up and it was green icky. Not sure why. Wonder if the antibiotics made it that color. It wasn't that color when he threw up around 7pm. After he threw up, he did his mouth care, just two, biotene (swish and spit) and nystatin (swish and swallow and he DID swallow). Then it was time for Tylenol and he took it for me just fine and then I put vaseline on his lips and back to sleep he went. I let him cuddle under his favorite blanket and then once asleep I take it off so he can try to cool off.
The transplant doctor did say that having the fever that Asher has isn't harmful, just uncomfortable. So, we'll try to do what we have to do to keep him comfy, cooling his head, giving Tylenol, etc.
Scott came to see Asher today and Asher tried to stay awake for him as much as he could. His mouth hurts so he doesn't smile or talk much at all, if at all, but I knew he was glad his daddy came to see him.
Asher is asleep right now and snoring. He rarely snores. He has slept so much today, beginning around noon or shortly before I think. And, it bothers me. I know he has to go through these down days before he can get better, but it is scarey and lonely, that's the best way to describe it.
Posted by Steph in
Chemo Round 6 & Transplant, Counts, Family, on Thursday, March 15. 2007 at
Day 2 post stem cell infusion
I don't have a printout of the counts again, but here is what I was told:
hemoglobin 11.x (good boost from the blood infusion yesterday)
When his platelets get to 20 or under he will get some....so either tomorrow or Saturday. They expect him to need blood maybe every 5 days or so and not sure on platelets yet. He hasn't gotten many platelet transfusions in the past so he might accept and keep transfustions inside longer.
I woke Asher today around 8:30am after I heard him explode into his diaper. Maybe the morphine will help stop the diahrea which he has from other drugs. He is in a fairly good mood and we have only pushed the PCA button two times. He got his nupogen shot like a champ. He gets his last dose of paliferim today. His weight is back up after two nights of TPN at 16.3 at 6:30am. His TPN will be at about 100% calories tonight.
Asher's skin is still warm but the redness (from the Paliferim) from last night is gone. Only thing is still the discoloration/redness/dryness from the thiotepa chemo, and his elbows are the worst.
PT was here and he refused to get out of bed, again. Can't blame him.
Not much else going on today. It is amazing how cooped up a private transplant hospital room can feel....it is kinda depressing here, at least that is how I feel. Just staying busy with different games with Asher and working on my Digital Paper Tearing when Asher is sleeping. Can't believe 1/2 of March is over! We're almost there!
Thanks everyone for checking on Asher like you do!
Asher hasn't requested any food today and when asked (about food or drink) he says no. When I went for lunch I got a salad from the cafeteria and a cookie and Asher said, "Oh! A cookie! I like cookies!" So I gave him a piece and he took a little nibble and that was it, held it and then gave it back to me. So, I'll just let him ask when he's up for it.
Asher's shower went okay (cept he cried before and during it - I think his skin really hurts him) and so did his dressing change. His skin is looking better and his skin tear looks OK, it won't fully heal till his counts go back up. But I really like this non-tape dressing. The nurse just wraps gauze around his chest and then uses the stretchy stuff (like they used to use on his head) to hold it in place and it is working just fine, thankfully. This will allow his skin to not get worse as his counts start to recover.
Not much nausea today; just gagged on one of the 9am mouth cares.
All of Asher's long (old) eyelashes are gone now and new ones have already started to grow in.
He has pushed his PCA button three times from 10am-1pm. The button dose is 0.3 so not huge. Glad he is remaining comfortable.
Some of his skin redness is actually still there (or back) (on his right arm, his back, etc. anywhere where he seems to have a pressure point now, weird) and the transplant doc was just in here and said she can't know for sure what it is from but the Paliferim does cause skin rashes and as long as Asher isn't itching it, they aren't worried at this point. Asher's last dose of the Paliferim was 15 minutes ago.
He's watching a TV movie now and about to have his nap.
I have taught Asher how to turn the TV on and off with the remote. Last night around 11pm he FINALLY gave in and turned off the TV and said to me, "Mom, go to sleep, I want you to go to sleep now!" It was funny. It was right when his night nurse came in to listen to Asher and stuff (I still don't understand why she did it at 11pm when usually they do it around 8pm-8:30pm). Anyway, so today he turned off the TV when he was finally ready to nap, and that was around 4pm.
He's still sleeping, even though we just got him up to weigh him. He said to me, "What are you doing?" I said, "Getting your weight." He said, "Hey, what happened to the TV?" I told him his show ended and it shut off. He said, "Hey, what happened to my train?" I said, "It's right here" (by his pillow). Then I tucked him back in and told him he could play after he wakes up and I had to go to the bathroom. He said, "Okay," and when I got back he was asleep again.
I forgot to tell this little story earlier.... After one of the nurses was here checking on Asher (around 11am) she used the little tool with a flashlight on it to look in his mouth. So then I told Asher to look in his lizard's mouth (he has this rubbery lizard (and frog) that he is VERY fond of right now). So he did. Then, when the transplant doctor came in around 2pm he told her that he looked in his lizard's mouth. She asked him, "What did you see?" He answered, "Sores." She asked him, "How can you make his sores better?" He didn't answer and she then asked if he had given his lizard mouthcare and he said no. She then told him to keep up his mouth care so his mouth would feel better.
The transplant NP came in this evening and talked to me a little while Asher slept. At one point she said to me, "What are you going to do with your girls when you have to bring Asher to clinic and it is still RSV season?" I said I hadn't thought that far ahead, that I worry about one week at a time most of the time. She then apologized for bringing it up. Truly, I do not really think about April yet. Heck, Alexa's 3rd birthday is one week away and I know we're not celebrating till Asher gets home but I still think about it. When I have no control over certain things, why think so far ahead. I have gotten woken up so much here at night that I am now really feeling the depths of sleep deprivation....I get sad and irritable when I am tired. It becomes hard to think or focus. So, one day at a time is good enough for now. April will be there when it comes.
It is so weird to be cooped up in here and hear it is 91 degrees outside and be missing it (not all bad since I'm 20 weeks pregnant and hot enough inside). I wonder if Asher's flowers are still living through the heat and afternoon sun. We're starting to really miss the girls. That reminds me, the other day Asher looked at the two photos on the dresser here in the hospital room (Asher is holding Aubree and Alexa is holding Aubree) and he said, "I love my sisters." Deep down I think he misses them way more than I even do, so that must be a whole lot!
Oh, and before his shower around 1:30pm today, Asher and I were playing SIMS2-Pets on my laptop and we made our family. Asher really enjoyed this. We forgot to add our 2 cats though before saving.
Like clockwork, about 6 hours after the Paliferim, Asher is all bright red again. I looked in Asher's mouth tonight and his tongue is all white on top....mucositis really setting in.
Asher played with his trains a little on the floor mat tonight, and a little more Sims2. Now a movie on TV....then sleep.
Posted by Steph in
Chemo Round 6 & Transplant, Counts, on Wednesday, March 14. 2007 at
Day 1 post stem cell infusion
The night was pretty good. Asher didn't start to wake up till around 9:10am and then I had to wake him because he was to get his first dose of nupogen and it is in shot form versus IV form (we have been told giving g-csf subcutaneously is more effective than IV, even though there are no studies to say why this is so). Not a real fun way to start his day, but he handled it well.
I wasn't sure if Asher was in pain or not (when will I learn?), but after being irritable for too long after waking up, refusing to eat, swallow, talk, etc, finally around 11:30am I asked that he get a dose (1.0) of morphine via IV. Last night's dose was 1/2 that and didn't seem to help as much so I went with the 1.0 and now a different kid is in this room! Happy, talking to even the PCT, smiling, giggling, opening cards that came in the mail for him, and doing the things he refused to do 2 hours ago. So, lesson learned, once again, don't wait on the morphine. He is actually going to have a PCA and so he'll have a continuous low dosage started a bit later today.
Asher's hemoglobin was 8.1 this morning and he received a unit of blood (actually it is still running). We premedicated with Tylenol (they almost gave Benadryl too but I said please no). So that probably has helped him (or will) too.
Counts from 04:45
wbc 0.4 (4-12)
rbc 2.53 (4-5.3)
hemoglobin 8.1 (11.5-14.5)
hematocrit 22.1 (33-43)
platelets 91 (140-450)
alt/sgpt 190 (30-65)
Asher had another IV dose of morphine around 2pm and about 10 minutes later, all of a sudden, he had to vomit. He didn't seem nauseated and he seemed fine, still playful, but starting to get tired. We need to watch to make sure it isn't the morphine that is making him sick now because the PCA has started....dose is only 0.4 an hour with a button Asher can push if he needs it.
Asher played pretty well from noon - 2:30 (with a shower and dressing change in there) when I put Asher down for his nap....and he is still sleeping, four hours later. He did wake up an hour or so ago and asked for a hot dog and fell right back to sleep....hot dog is now cold.
Asher is bright red, mostly top of arms and chest and back, and head. They think it is from the Paliferim. I remember now that Asher's hands got bright red, like a sun burn, after he got the first three doses of Paliferim (at home prior to admit).
At 7pm the nurse came in to weigh Asher, an hour later than normal (they weigh him at 6am and 6pm around the clock), so I got him up and then he stayed up. We played Zingo on the couch-bed. Asher likes to get out of his bed and come to "mommy's bed" (or "daddy's bed").
OT came today, twice, to say that she will be back on Friday with some tasks/projects for Asher to work on. When she came in the morning, Asher was in pain and crabby and when she came in the afternoon Asher was napping. We will decide together on Friday if Asher will be "tested" inpatient during his stay now or outpatient once he is released from transplant.
PT came today around 10am and Asher wouldn't cooperate with her (she came when he had only been awake/"up" for 50 minutes and our morning didn't start out that great, although Asher and I were playing Ker Plunk! in his bed and she stretched his feet/ankles and said he felt good. She said she has no issues with Asher right now, just get him up when he feels up to it and it is okay if he doesn't.
Asher found his morphine PCA button tonight. The nurse said it was pushed 23 times and he got 2 doses. I think he was confused what it was for because I told him but he was convinced the nurse would come if he pushed it. She had been playing with him (pretending to be afraid of his lizard and frog, which got him up and walking around the room picking them up as he threw them to "get" her) prior to this and he wanted her to come back. I tried to tell him she was probably working and I would play with him but he really liked playing with her.
Asher isn't getting fluconazole (sp?) (anti-fungal) because it can affect the liver and his liver levels aren't back to 'normal' yet. So he is getting a different medicine, via IV.
Asher's urine is back to normal, not pink or red anymore.
Asher is still doing his mouth care, but is kinda whiney about doing it and it takes some coaxing. I tell him to do what he can and swish and spit whatever he wants. He does the salt water, biotene, g-something (white stuff) all swish and spit or just spit, and then he does the nystatin, swish and swallow, all very well. No gagging or throwing up, or if he starts to gag I tell him to take a deep breath and then distract him with something (a toy, mail or something). The transplant doc said that's great he is still at least getting it in his mouth. On examination, she said his inner-cheeks ARE white which is break-down (dead?) of cells and to just do what we can to keep getting him to do the mouth care, even pushing the PCA button prior to doing it.
Asher is still requesting food! This morning, pancakes, then I mentioned the hotdog, and before bed he wanted a Scooby Snack. However, he takes one bite, holds the food in his mouth, and then yells for me to get something for him to spit it out in. He doesn't drink anything offered and doesn't ask for anything. I'm sure the taste is just gone and the sores are just growing....doc said don't force the issue and that is why the TPN is being given now. He has also started to just hold food (like a bowl of cheerios, a bag of teddy grahams, etc.).
I think that covers everything from today. Asher is watching TV right now, a movie, one that is repeated over and over on the same channels, but he doesn't really get sick of seeing the shows, thankfully. I hope he gets tired soon because it is my bed time. I think I need to learn to sleep-in because when they weigh him at 6am, I get up and shower and then go down to get breakfast in the cafeteria at 6:30am when they open and bring it back up to the room. The girls are always up between 6am-7am at home, so I guess it really is best to keep on schedule, but to think I could have slept till 9am this morning with Asher....
Posted by Steph in
Chemo Round 6 & Transplant, on Wednesday, March 14. 2007 at
I think it was around 9am when a couple of people came into Asher's room. I think it was around 9:50am when many people were coming (and going) into his room. We were a bit delayed because the man who brought the freezer with the stem cells, forgot the bath (to thaw the cells), and they had to wait for someone to bring it.
Asher was very scared when so many people were in his room. He was scared, I was overwhelmed.
The transplant NP asked me if Scott was coming or if I was going solo today. That made me feel a bit scared, a bit alone. Scott was at work today.
As people were coming (and going) Asher asked me, not once, not twice, not even three times, he asked me four times, "What's happening today, Mommy?" Each time I answered, "Your going to get 4 bags of your stem cells, one at a time, on your pole and hooked up to your catheter. When one is done, they will put up another one. Remember, the monkey room, from last fall, when they were collected?"
At one point it seemed like he finally understood, at least the words, "stem cells," and he said, "Then I get to go home!" with a big smile on his face. I got the fun job to tell him, "Well, not right away, maybe in a few weeks after you are bigger and stronger." He started yelling and crying right away. I stepped away and sat on the couch and just let him cry it out. I tried to remember if someone had told him he could go home after. All I could think of was the transplant coordinator, from yesterday, showing us the photos, talking about the process....I think she may have said the word home, but in context of the entire time of Asher losing his counts and then going up again. But, I think Asher heard, stem cells and home and that was all. I couldn't take it away or change what happened, just try to help him understand....that's hard to do. When his crying lessened, I went by him and told him after a few weeks of him getting bigger and stronger, we'd go home and celebrate Alexa's birthday and Easter. We'd make a cake for Alexa and also search for Easter eggs. He got a little smile on his face, and said, "I can make a cake."
As people were coming in and Asher's vitals were checked, the transplant nurse/doctor's assistant turned to me, got pretty close, and started telling me what could go wrong. His blood pressure could go up, could go down, he could have breathing problems, he could....well, I don't remember it all. I started getting a bit emotional and just stood there and nodded. I remember she said they would have vitals taken constantly, they would have Ativan for nausea, they have other items available if something goes wrong, meds, oxygen, etc. Just warning me in case they have to act fast that I know they will take care of Asher.
I was also reminded of all the stuff I was told yesterday....about the bags, the duration, the goals....won't repeat them here.
Since we had his bed against the wall (for more room in the center of the room) there was only room for two people to stand next to Asher. So, any time a nurse needed to talk to him or look at him, I couldn't be next to him. And, a child life gal wanted to be near him a lot at first too.
When the first bag was about to start I wanted to hold his hand, but he turned away from me, really mad....he had just asked or told me again that he would get to go home after this was done. Meaning, today. I had to tell him no, again, and he was mad and turned his whole body, and face, away from me.
I ran away at that point, because tears started just filling my eyes and I knew I couldn't stop them. So I got outta the room, went to the bathroom out in the 2nd floor area, wiping away tears as I walked. I thought I wouldn't stop crying. One of the transplant team gals had followed me and asked me if I was okay....then after splashing water on my face in the bathroom I went back and she was in the antiroom. I told her I was just so filled with emotion. I wasn't sure what I was feeling. Just such a huge huge day. Things could go wrong. This might not cure him. This might cure him and he'll never have (this) cancer again. Honestly, so many toughts, running, at a very face pace, through my mind. Doesn't matter what my hopes are, my dreams, my prayers, my faith, I felt I really have no control over any of this....
Our conversation ended when Asher started calling out to me from his bed. I went in and this time just climbed up on the bed with him so 2 people could still have access to him for vitals and for getting the cells into his catheter. I held him. His first bag was up and the cells were going into him. He started smacking his lips and moving his tongue around. I knew he could taste the nasty preservative. They warned me about this, and said suckers or something in the mouth usually helps, but Asher refused to try a sucker as advised. He began vomitting. Bile and a little bit of food that he had had that morning. He continued to gag, vomit, spit, in the bin, with his head in as far as he could. It seemed to make him feel safe, there. When he felt a break in it (when the bag was finishing up) he would lay back on me, completely exhausted, his eyes wandering, person to person, trying to figure out all these people. The doctor's assistant still tried to get him to suck on a sucker, but he refused. She did give him an extra 10 minute break once the bag was done to give his tummy a break, also gave him Ativan, twice I think, but she said she can't just give him more. The taste is making him feel that way and as the 2nd bag started he began again, hanging his head in the bowl, vomitting, dry heaving, spitting....it would continue like this till it was over.
Asher's blood pressure did fluctuate, but not horribly. He ended up with no complications with the first bag (or any of the bags).
I'm really glad Asher had four bags, four small bags, because it allowed his tummy to stop hurting a bit in between and by the 3rd bag he started understanding what was happening. A bag of red stuff got hung on his pole and then put into his catheter and then a syringe used and then it would be empty. Also, by the end of the 2nd bag he wasn't so scared and let me leave his side to go take photos of what was happening in the anti room. I asked him if I could go take photos of the freezer and bags thawing so I could come back and show him (via the digital camera screen). He nodded. I left his side and went and took photos of the process of thawing a bag and bringing it into him and then I went back to his side and showed him and then we continued taking photos, Asher and me!
After the 1st bag, I told him he had three more to go, great job Asher! I held up 3 fingers. After the 2nd bag, I told him I was really proud of him, he was half way done. I held up 2 fingers and told him only 2 left. After the 3rd bag, I told him only one left, with one finger up....
After the third bag ended, Asher said, "Give me the camera. Get a photo of the empty bag!" It was so cute. He made me, and everyone in the room, smile. So, during the 4th and final bag, Asher was throwing up, but grabbing the camera and taking photos of the people, the bag, the syringe, the IV pole, etc. It seemed to help him. I was so proud of him. When it was over he wanted to play on the floor with the race car track that the child life gal brought him a couple of hours earlier.
Posted by Steph in
Chemo Round 6 & Transplant, Counts, on Tuesday, March 13. 2007 at
Today is the day. At about 10am Asher will receive his first bag of cells. Yesterday evening, two gals talked to me about what to expect for the morning, even showing Asher and me photos (Asher wasn't too interested). He will be premedicated with Tylenol, hydroxyzine (already getting this one), another hydro-something, and a medicine to make him pee (starts with "m"). (As you can see I'm not good with medical names.) The cells will arrive frozen and stay frozen until given to Asher. The container will be opened and fog stuff comes out (like when you open a deep freezer). Inside will be "cassettes" that look like a CD case that contain the frozen bag of cells. One bag will be taken out and thawed in a "bath." The color will turn from a pink to a more reddish color. The bag will then be hung on Asher's IV pole and given to him over 10-15 minutes. They will go as fast as they can because as soon as the cells are thawed out they start to die. However, during the time Asher is getting the cells he will taste the preservative and he will then feel sick to his stomach, so they are going to have suckers on hand for him to suck on if he wants and they will be giving him antinausea medicine. If he throws up it is okay, but they can slow down the rate they are given if needed, just not too slow. As soon as one bag is done they will thaw the second bag and begin again, until all four bags are done. So, it will take about an hour. During this time they will check his blood pressure (usually can go down or up depending on Asher's reaction to the preservative the cells are in). They will continuously monitor his blood pressure for 2 hours after and then go back to normal vital checks. Also, everyone has been warning Scott and me about the horrible sulfer/fish/rotten egg stink of the preservative. Two people offered peppermint scented something (balls?) that they can put in the room and I just said no thank you....personally, I would prefer one "scent" only, thinking a 'mixed scent' would be too much for me. I have actually smelled what I think they are referring to from the room next door, so I think I know what to expect, but am sure it will be so much worse in side the room. Oh, and there are some red blood cells with the stem cells (because when they initially collected Asher's stem cells, some red cells just get in there) and after Asher receives the infusion, the red blood cells will break down and excreet through his urine. It will look like he is peeing pink urine for up to 24 hours. It is okay and expected. That pretty much sums up what will happen in the morning. There will be many people in this small room, so that is probably the only thing that will greatly affect Asher, besides the icky taste and nausea.
Asher's hemoglobin level at 2:30am was 9.0 so he didn't receive blood this morning.
I will come back here at a later time when I am not so tired and emotional and write out more about how today went, but just a quick summary (I know, so unlike me), Asher got his cells, beginning at 10:51am (delayed because they brought the cells but forgot the bath to thaw them in and had to have someone else bring it). First bag took 17 minutes, think that was the longest one. The fourth and last bag went up at 12:05pm and was done at about 12:15pm. Asher vomitted, consistently, every bag during the entire duration of the infusion. He refused to try a sucker to get rid of the taste and just hung his head over and in a bowl to throw up, after a bit of food and bile the first time, usually just saliva/flem because there wasn't anything left in his tummy. The odor/smell is there, but isn't too bad for me at all. I'm not even sure what it smells like but it doesn't smell like rotten eggs, like the room next door smells like. Mostly, my eyes just sting from it and now when I get close to Asher I can still smell it, but it doesn't stop me from being 1 inch from him. So thankful for that! Asher did start peeing the broken down red cells immediately - all urine has been pink hued to dark red since the infusion ended. I was told this actually can continue for 48 hours not the 24 hours I thought. Asher's heart rate went down to about 75, and his blood pressure only went way up when he was vomitting, so NO problems! I noticed during the two hours following the infusion, his blood pressure and everything, really, was up but no one said it was "bad." Like 106/72 for blood pressure I think (his norm is 86/53, I think). Anyway, he is doing okay and has finally crashed (at 3:30pm because I made him go to bed) after eating 3/4 of a hotdog (most he has eaten in days) and playing and showering and dressing change (NO more tape on his skin....just a gauze wrap....)....like I mentioned earlier, I want to give a play by play on how today went and will do that later when I am not so tired (didn't sleep much last night). I DO have photos from today that I will add to the photo journal.
Thank you for your thoughts, prayers, well wishes, and for following Asher's progress!
Asher was quite irritable the whole day, but even after a nap, it continued. He kept saying, "Owie" and tugging on his dressing (where the skin had pulled off by the tape, it was hurting him). They have said that the mucositis has started in his cheeks (makes sense because he was pushing on his cheeks yesterday), so we know his tummy aches and irritability are most likely from the pain. The transplant NP talked to the pain doctor and she said, "Has Asher's irritability started? That's how he gets." It's nice to have a doctor really remember and care! He received a small dose of morphine to try to help and will most likely end up with a PCA. He is getting three doses of Paliferim again; he already got one dose today around 2pm. Asher's TPN has now started (began at 50% calories first night and then will go up) and he will continue hydroxyzine and zofran q6. Scott just left after visiting and now Asher and I are off to sleep. It's the end of a long, but good day.
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 Steph in
Chemo Round 6 & Transplant, on Sunday, March 11. 2007 at
When I first got there, I had to wash up in the room outside of his room (divided by two doors) and I heard Asher saying, "Stephanie, where are you? Stephanie!" So I peeked and I waved to him through the window in the door as I chuckled and he waved back. He was so patient! On my way into his room, I ran into a nurse and a doctor and got talking to both of them.
Asher busily showed me all the things he had been doing the last couple of days. He wanted to get off his bed and show me so he did, slid down off the edge, all on his own, course me freaking out and turning to catch him and he acted like he had done it before. Then we played with the beachball, bat, punching-balloon (what is the technical name for that toy?), and then he was looking for another toy but we couldn't find it. Then a helicopter was landing on the top of the parking garage so I quick told Asher and lifted the blinds and we sat on the couch (him on my lap) watching to see if it was going to take off soon (which it didn't while I was there) and we kept seeing airplanes that were taking off from the nearby airport. Almost always, two at a time. It was just nice to sit there and hold Asher, with no worries. Then I took pictures of us, together, smiling and making faces at the camera, and I took a bunch of just Asher. I have so many favorite photos from today!
When our time was over, Scott had called to say he was on his way back, he said he didn't want me to leave. I held up two fingers and I said I would see him in two days (because I'll return Monday). We did our favorite blowing kisses and catching them and smacking them to our cheeks and then I left him. At least I know he looks great and is in good spirits with the stuff he has to play with.
If 1 1/2 hours could be any more precious, or fast, or memorable, today taught me it can be.
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 Steph in
Chemo Round 6 & Transplant, Letters to Asher, Quotes / Inspiration, on Saturday, March 10. 2007 at
I am soooo proud of you Asher-B for hanging in there the last eight months of treatment. I love you little guy!!! Love, Mama
Some quotes for this day:
There are no gains without pains. -Benjamin Franklin
To succeed, we must first believe that we can. -Michael Korda
Let me tell you the secret that has led me to my goal: my strength lies solely in my tenacity. -Louis Pasteur
Yesterday I dared to struggle. Today I dare to win. -Bernadette Devlin
My will shall shape the future. Whether I fail or succeed shall be no man's doing but my own. I am the force; I can clear any obstacle before me or I can be lost in the maze. My choice; my responsibility; win or lose, only I hold the key to my destiny. -Elaine Maxwell
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 Steph in
Chemo Round 6 & Transplant, Quotes / Inspiration, Tests, on Thursday, March 8. 2007 at
When I got to the hospital today shortly after 10am, Asher said to me, "You came back." I said, "Yes, remember yesterday I said I'd be back tomorrow. Here I am." I'm glad to see he is trusting me.
Asher enjoyed his shower today, did his 12pm mouth care without arguement, and his dressing change went very smooth. He barely flinched when the tape was being removed today.
Today's chemo (carboplatin) started around 12:50pm. Really can't even tell he's receiving chemo at this time. It's 2:10pm and Asher is still going strong, in a good mood, playing with car race track and playstation. He refused any lunch, which Scott had ordered before going to work, but did drink 1/2 a carton of milk.
PT came in around 1:30pm and she said his ankles feel great and Asher is looking really good. Asher showed her how his car race track works.
Scott has taken a break and gone to work (since around 12pm) and I think he'll be back around 4pm in time for us to both meet with the doctor that did the neurodevelopmental tests on/with Asher.
Asher was still napping during our hour with the doctor. The results of the neurodevelopmental tests were pretty consistent, being either below average or well within limits. Many of the below average items were much explained/expected since he had a brain tumor and two craniotomies, and 150 days in the hospital in the last 9 months, such as, decreased fine motor sills, inability to potty train, etc. He was better at visual tests than verbal ones, although I am not sure this is always because he is shy, which is what so many people say about him lately. I think he is more reserved with his trust and since he has little to no control over chemo and hospitalizations, when he can control something, he often chooses to not participate, such as these neurodevelopmental tests. With that said, Asher performed pretty well for the doctor, and, interestingly enough, the one session I sat with Asher, he was above average. We discussed a bit about getting a consult from OT while he's in the hospital this next month as he has difficulty holding a crayon or pencil and getting the results he wants with them. Most likely he will be able to continue with therapy, such as speach and maybe even PT and OT.
When he woke up from his nap, we were just finishing with the doctor, and he pretended to go back to sleep, but then started throwing things off his bed at us. He is so silly. That reminds me, during one of his neurodevelopment tests, the doctor said she told Asher, "You silly boy," and he responded, "That's what my mom calls me too."
He was in a super good mood when he woke from his 2 1/2 hour nap. He ate some green beans and then a ham cheese lunchable (again - actually, the kitchen had made this one look like a lunchable all on a plate because they had run out - I was pretty impressed that it looked just like it, ham in circles and cheese in squares and some crackers).
Then he played with the ball from PT with daddy and me and a little baseball, swinging a bat, and this and that.
He was okay about me leaving and when I got home it was just in time before Alexa went to bed (actually she had just gone to bed but gotten up when I got home) and I had her call and talk to Asher and they had a good talk, even talked about Humpty Dumpty.
I'm going to miss my little guy now as I won't be going during the yucky skin-problem-causing chemo. I'll return Monday night or Tuesday morning so Scott can get back to normal work at work instead of working from the hospital. The only concern might be the smell of the preservative they use with the stem cells; we have been warned it smells bad! My smell is so ultrasensitive (as is my stomach) when I am pregnant, so if the smell is too terrible (have heard it is like fish, or sulfur, or garlic), I may have to hold off going full time till around next Thursday or even Friday.
I'll end with two quotes:
A friend emailed me this one recently (and I have read it before (and posted before) but is always nice to read again):
I wanted a perfect ending. . . Now I've learned, the hard way, that some poems don't rhyme, and some stories don't have a clear beginning, middle, and end. Life is about not knowing, having to change, taking the moment and making the best of it, without knowing what's going to happen next. Delicious ambiguity. -by Gilda Radner
Another good one:
You gain strength, courage, and confidence by every experience in which you really stop to look fear in the face. You must do the thing which you think you cannot do. -by Eleanor Roosevelt
Thanks for your continued prayers and support; it helps us to know we're not alone!