The NP called me around 5:30pm tonight before going home and we decided together that Asher would go home on TPN. (As long as he starts eating and gets better through the first week, Asher could keep the TPN for up to 2 weeks at home, but if he doesn't eat at home, we'll have to go to NG tube after one week.) It will be 18 hours per day in order to give him all his fluids. He will also either need a vitamin injected into the TPN bag or a separate vitamin.

She gave Scott Rx which have to be filled before Asher is discharged; so Scott will drop those at the pharmacy down the street from the hospital tomorrow.

If Home Health can deliver TPN, pump(s), and anything else needed through them, on Friday (3/30) AND a nurse can come out Friday (3/30), Asher will be discharged Friday (3/30). If Home Health can't get everything that fast, then Asher has to stay at the hospital till Monday (4/2).

Sounds like Asher will have clinic visits, at the hospital, twice a week at first. Also, until Day 100 (100 days post stem cell transplant), Asher will be under the care of the transplant team and after that he will go back to care under his oncologist.

I think Asher would have his first post-treatment MRI at the end of May (90 days after his last one) and then every 3 months for the first year, or maybe it is 90 days after transplant, I'm not sure, have to check on this.

If I think of more I will post it in this blog entry.

Transplant: Day 19
Day 9 post stem cell infusion

I used to just think the difference between night nurses was how quiet some were and how loud others were. Now I know the real difference are the ones that just hang and run meds and the ones that care.

Asher got a nurse tonight that has never taken care of Asher. There aren't too many nurses left here at PCH 2nd floor in that situation, but we got one tonight. That fact doesn't bother me, but I found it odd she never asked anything about Asher or what she could do for him tonight or anything prior to him going to sleep.

This nurse doesn't check one diaper. Curious why she wasn't warned that he had C.diff and fills a diaper every 1-2 hours. She hangs her med and leaves. She has no intention of checking Asher or his diaper at that time either because she comes in without a yellow gown and gloves on. So, already two times tonight I watched her come in, start a med, and leave. I get up, Asher's diaper is so full it has overflowed to the chuck (pad on his bed) so I change his diaper and the chuck. The third time two pumps were beeping for 10 minutes before I got up, shut them off, and then changed another diaper. Seconds later she came in, "Sorry I let them beep." Then she said, "The last stool had blood in it." Yeah, I know...I changed his diaper....oh well....

In situations like this, I prefer to just stay up all night and take care of Asher because I want someone who isn't afraid to change a diaper or afraid to touch his head to see if a fever is starting....so that's me tonight.

And, the moral of the story....I am really amazed and thankful for the night nurses that are willing to stand by a kid and take care of them when a mother or father is tired and needs some sleep at night! Asher and I have been quite blessed with a few wonderful night nurses the past 9 days, one in particular....she had Asher 3 nights last week and 3 nights this week. Whenever I would wake up, she was always there with Asher. She stayed by him during vomitting, she changed all his diapers at night, she mixed a special cream-powder for his butt to protect it from all the diahrea, she carefully lifted him to weigh him at 6am, he even took Tylenol from her so I could sleep, and she bought him a special Elmo twirly flashing light toy and gave it to him the other night. She's great and she's making such a huge difference! Hope she's back next week so I can tell her just that.

The good news, for tonight, is his temp has been 36.8-37 since 9pm! Yeah Asher!

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Counts 3am
wbc 14.5
rbc 3.42
hemoglobin 10.8
hematocrit 29.9
platelets 66
ANC 11455

PTT Time 14.3
APTT 32.4
Fibrinogen 631
Thrombin Time 15.3
D-Dimer 5373

weight 17.6kg I think at 5:30am this morning - the transplant staff said this is okay, but hey, his diapers are barely fitting and we're talking about 3 1/2 lbs extra on him right now

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Update 11:00

They are stopping the anti-fungal medicine and the neupogen with his ANC over 10,000. They got the bacteria sensitivities back; the bacteria in his blood (Enterococci) is resistant to Vancomycin so he is getting a different one as of this morning (Linezolid) and he has to get it for 10 days so his hospital stay is for sure another 10 days. They will slowly take other things away too, the morphine, the TPN, etc. He hasn't had a fever since 4pm yesterday. He hasn't thrown up since morning yesterday, I think. His stools are still pretty big/heavy, and he's averaging 8 a day they said (sure seems like more than that to me, but every now and again he will have a urine only diaper).

Asher's skin started peeling yesterday from the Thiotepa chemo skin burns/Paliferim skin rashes. His head and elbow were the first things and now I see his armpits are next. His elbow was really bothering him and he kept rubbing off the dead skin onto his pillow last night.

Asher is up and looking really good. Not as tired anymore and more himself! He's on the couch playing game boy now (I had gone to the shower and he said he wanted to sleep there but I put game boy in his lap just in case and sure enough, when I got back he was playing Curious George). He said to me, "I like you sitting by me." He's too cute.

Asher has started getting nosebleeds. They aren't too severe yet. They started as pink tinged mucus that he just blew out but this morning the other nostril has blood that just runs. So, we'll keep an eye on it today.

So, I asked Asher if he wanted to call his sister to say happy birthday. Asher said, "No. It's my birthday. Cuz I need it more. It's not Lexa's birthday yet. Cuz it's mine." Earlier this morning he said, "I don't know how to make a cake." That came from our conversation on stem cell collection day (when he thought as soon as he got his stem cells he could go home....he was quite upset when I said it would be a few weeks yet) when I told Asher when he was bigger and stronger we'd go home and celebrate Alexa's birthday, make her a cake, and celebrate Easter too, and look for Easter Eggs. So, he remembered that. Anyway, Happy 3rd Birthday, Alexa Belle! Mommy and Asher will celebrate with you soon!

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Update 17:00

So Asher was up from about 9am-1:30pm. He sat on the couch with me the entire time and after a shower and dressing change he napped till around 3:30pm. I tried to sneak a little one in there too.

Asher's eyelashes and eyebrows are about gone now, with some just hanging on. I notice his left eyelid isn't opening all the way.

At a "typical lunch time" hour Asher asked for pizza! I was thrilled. He is asking for food. I didn't expect this meant he would eat anything, but I ordered it anyway. While waiting for it (it takes about 45 minutes to get it from room service) he said he wanted mushrooms on it. I tried to tell him the hospital didn't have mushroom pizzas but when we get outta here I'll be sure to get one from Pizza Hut for him. He cried (he is a bit emotional/moody/irritable today, like yesterday, although better today). Anyway, I had ordered cantelope and pizza and potato chips and a chocolate chip cookie. He took a bite of cantelope. He held it in his mouth for a bit and then started to chew it and then whined. He wanted to spit it out. I expected this. But, I'm thrilled that he put it in his mouth! He didn't drink anything today at all. I think I forgot to metion the last two days he had drank a bunch of water, although usually threw it up after.

Asher looks to be back to his almost old self already, schedule wise. Although, he is napping again now, but will probably wake up when Scott gets here.

I talked to the transplant NP around 4:30, during and after she played with Asher and his frog and lizard. She said he is looking great (although she just noticed his runny nose and is talking about swabbing him now, although, she wants to wait to see what his platelets are at because of his nose bleed). She said if Asher is only on the one drug for the Enterococcus, he could go home on it, but it will still probably take about seven days to get him ready to go home. So I told her I want the calories on the TPN cut back. They wouldn't want to cut back on the electrolytes, which makes sense, but in the past we have learned that Asher just won't eat if he is getting TPN or NG tube feedings. So, at least I threw it out there now. Also, Asher's morphine will go to 0.1 continuous tomorrow and we'll see how he does with that. I think he will do okay. We really only push the button when I shower him now because of the bone/skin pain. Oh, I also talked to the NP about cutting back on the antinausea meds, starting with the Ativan, going back to 0.5 if he is still at 1.0 (and she said 0.25 if he is at 0.5 now but I don't think he was yet). I also told her I want the hydroxyzin stopped. She mentioned if he remains fever free (forgot for how long) she will remove one of the other antibiotics too.

In any case, we're on the road to bringing our boy home. It's been an emotional week. When it gets too quiet in this room, with Asher napping, I am brought to tears at just the thought of one part of how this past week was for him, for me, how the past 10 months has been for him. I am sure the pregnancy hormones don't help my emotions right now, but I have decided it is time for a break. After crying several times last night, trying to get some sleep, trying to make sure Asher stayed dry with his diapers, I just need a 3-day weekend. I need to see the girls and just get some fresh air. Hopefully the house isn't too torn apart from the warranty repairs that have reeked havoc there this week. Scott will be here soon and I'll head home. Be back Monday morning or Sunday night I guess.

Oh, and I forgot....

Last night Asher asked to pick from the "prize box" after his dressing change. He just brought it up out of the blue. He used to have only one dressing change a week and get a toy from a prize box while he was in the hospital, but in transplant he gets one every day and has never been offered a "prize." But, the nurse held up the toys outside the window to his room and when Asher picked, she washed them down and brought them to him. So today Asher wanted another prize. However, it isn't safe for Asher to get those toys yet. So, the child life specialist came in with a piggy bank with Asher's name painted on it and she said Asher would get a ticket for each dressing change. I talked to Asher and we agreed after five tickets we will call the child life gal and he will get to pick a prize worth five tickets. At first the said, "No, I get five tickets," he meant for today's dressing change. I reminded him he gets one ticket each dressing change and after he has five (so Monday) he will get to pick a special prize (one that is set aside for transplant kids - mainly that it is brand new).

Transplant: Day 1

Asher spent almost the entire morning outside playing in the yard. He even ate lunch out on his picnic table. We ended up really scrambling around noon to hurry up and get the final stuff ready to get out the door on time.

Asher slept in his car seat all the way to the hospital. We got to the hospital shortly after the admit time and I took Asher right up to his room, with no stops between. He wore his mask and stayed in his umbrella stroller. He wouldn't get out to get weighed and when I tried to force him, he kicked and cried. They said we could do it after he got settled in his room. Things happened pretty quickly. We had a nurse that immediately got started checking him, hooking him up to fluids, and bringing us necessary supplies. He had to have blood draws, chest xray, and a double nose swab. He also got a new dressing change - no tegaderm, just gauze and hepafix (I think that's what it is called). Around 6pm he was hooked up to Heprim (sp?). It will run at a very slow rate until discharge, to protect his liver.

During all of this, Asher had a somewhat difficult time. He so did not want to be back in the hospital. (Forgot to mention, he had NO interest in packing his bag at home, so Scott did it.) The first 2 1/2 hours were actually horrible (not somewhat difficult). He didn't want to be hooked up to the IV pole. He wanted to throw things on the floor. He said he didn't like the room and wanted to pick a different one. He cried and screamed and carried on for that entire time. Finally around 4:30 pm he got engrossed enough in Sponge Bob on TV and some little cinnamon covered graham crackers that he actually started to smile and laugh!!! In between things, he said, "I want to go home." Probably three times. I told him it would be a while till we went home.

The room is a private room. VERY different from having a roommate like we have had all the other times. Scott said, "It's almost too quiet." I say, "It's perfect." It allows us to focus on Asher and just Asher.

I had Scott leave a couple of times - one to go get Asher's bins from the car and two, to go get a haircut before a place would close. Asher was upset when Scott went to get his things because he said he didn't want his things. I think he knew that meant we'd be staying awhile. When Scott was gone the second time they had come to do the chest xray and I had to leave the room (cuz I am pregnant) and Asher didn't like that too much. He kept calling out to me and stretching his arm. I was watching him and hoping he'd see I was just outside the door by the window.

The transplant doctor came in after Asher had calmed down, maybe around 5pm. Looked Asher over. She is really great with Asher and even though he wouldn't say one word to her, I think he liked her.

I noticed Asher's hands are SUN BURNED!!! He had a jacked with a hood on today while he was outside, and long pants, but his hands were exposed and for some reason, stupid me, I didn't put sunscreen on his hands or cheeks. His cheeks look more dried and wind burned than sun burned.

Thanks so much for all your thoughts and prayers and support you have sent us through the guestbook! It means a lot to us!

COUNTS: 03-04-2007 15:00

wbc 4.5 (4-12)
rbc 3.33 (4-5.3)
hemoglobin 10.5 (11.5-14.5)
hematocrit 30.2
MCV 91
MCH 31.6
Platelet 463 (140-450)
MPV 6.9
Magnesium 1.9
Phosphorus 5.0
Creatinine 0.29
BUN/Creatinine Ratio 55
AST/SGOT 32
ALT/SGPT 59
Bilirubin 0.3

Day 11 Chemo Round 5

Poor Asher was just crying and crying tonight at the hospital and now I'm in tears after hanging up with him 3 times in an hour....good thing I already had the girls in bed by 7:30pm.

During the first call, he was crying so hard but wouldn't talk to me. Then a bit later Scott called me back and said try again and I asked him if he had an owie and he cried, "Yes..." and I said, "Point to where it hurts." And he said, "My tummy hurts." Scott said they already gave Zofran and Morphine. I asked him if he wanted to try crackers and he said yes. But, then the phone rang again (after Scott brought him crackers) and he cried to me, "I don't want crackers. I don't like crackers." So I told him it was OK and he didn't have to eat any. I sang to him (Twinkle Little Star) over the phone and I asked him if he had the bear I brought him yesterday (a bear that Michelle and Erin sent to Asher last fall) and he said he had it and I told him to hug the bear, lay down, and close your eyes....he stopped crying before hanging up, and I hope he's okay. I told him he could call me back if he wanted.

Just breaks my heart and I miss him sooooo much. Sometimes he just needs his mama and this darn flu cough just won't go away....11 days now without seeing my little boy!

Oh, and my worry about his platelets....they are still going down. Scott will probably post what his counts were tonight. BUT, just found out he can't have a transfusion of platelets cuz he's close to transplant they don't want to give him artificial stuff,....platelet transfusions are only platelets that stick around the body for 2 days. So....new stuff to learn as we prepare for transplant....

Other than pretty irritable after 5pm, Asher had a good day in his hospital bed.

The plan is, no fever through the night, no bacteria growth (normal wait of 48 hours), and higher ANC by morning (keep up above 250), then Asher can go home early in the day tomorrow.

Crossing fingers.

No fever since middle of last night. He's getting two antibiotics right now every 8 hours. Last he had Tylenol was early this morning. He's confined to his room since ANC is below 250 and he is upset he can't go to the playroom (especially since two people asked him today if he was going to go....oops....I don't blame them, he doesn't really look sick and he wants to go play and walk (although his legs and feet hurt bad)). He's been playing in bed and slept from noon - 4pm. So far his head looks okay (YES I AM LOOKING - don't care that the oncologist says it would be so rare for anything to happen to his head again), his bottom looks a little red but okay (he did tear a little a few days ago though during a bowel movement, so thought he might have gotten infection there), and his broviac looks okay. Nothing had grown from the culture (yet). They won't culture again unless he gets another fever. They will draw labs to check his counts to see if he is going up or down since we're not really sure. Sleep sleep sleep - that's what we're hoping for tonight. G'night

The surgery to put in the BROVIAC and the spinal tap happened on time and were done by 10am. Asher slept off the anesthetic till 11am and then yelled and screamed and kicked for 2 hours. "I want to go home." "Daddy carry me." "I want to be free." (He also unhooked his fluids and took off the other cap on his BROVIAC.) "I don't like Mommy anymore." He was spitting, wiping snot all over his face (wouldn't let me use a kleenex), and trying to hurt himself. We got lucky last Friday with him waking up so well and he made up for it today. It was hard. After Bendryl and then Versed and then eating a few bites of banana, teddy grahams, and scooby snacks, he finally took an hour nap. Now we have his DVD player (gift when he was in the hospital last time) and other items in his suitcase (Kenzie Kase) here for him to occupy his time. Maybe soon we'll have a room. Almost 5 hours of just sitting in PACU. I could use a nap. At least he's kinda happy. I reminded him that we packed our bags last night together to stay and we'll be going up to the 2nd floor soon. I think we'll even be in the same larger room we had in round 3, but on the non-window side.

Day 21 Post Wound Surgery #1

Today Asher had his third VAC therapy dressing change on his head. They gave him a dose of versed upstairs, two more doses downstairs and then the anesthesiologist told me later it took three times the "normal" amount of propofol to get him fully asleep. My boy is one tough boy! He was groggy and out of it and they told me he was still putting his hands up to his head while they started to work on it.

Then the anesthesiologist gave him versed, zofran, clomodine (spelling?), and demirol. While he was out they did his PICC Line Dressing change too, more woohoo! He woke up slow slow slow, got brought up stairs and he slept on the way up, then woke up when I moved him to his bed and he ate a sugar cookie that my friend Barbara brought to him today and drank milk, and is now sleeping again while clutching a thing of cupcakes. Everyone that comes in just smiles big. (NOTE: Right now he only eats right after he wakes from anesthetic if he wakes in a good mood.)

(photos removed)

So, the anesthesiologist said I could only stay till Asher was out and then I had to leave....BUMMER! BUT, a nurse came out to get me from the waiting room part way through and said the plastic surgeon and the neurosurgeon both wanted me to come see it. Yeah! I was glad I got to see it in person. It doesn't look as bad in person as it does on my camera (the nurse had taken a photo). They said it looks better than they thought it would. It is smaller. It isn't bleeding. The bone looks okay right now, but still exposed. They said he won't need antibiotics at home. They said they are feeling good about the VAC Therapy that is being used.

So, all good news. Oh, and for the dressing changes next week, they will NOT be done in the clinic. They will be done in the PACU just like today. The only thing is, they will be done outpatient so we have to check-in at admitting 1 1/2 hours before the procedure and have to stay till he is awake....for instance, next Friday we have to be at the hospital at 6:30am.

Now to pack up this room and take my boy home tomorrow morning or early afternoon!!!!!!! I'm just going to enjoy this time and not worry about his tumor, his cancer, his chemo, his future therapy, nothing, just enjoy having my kids under one roof again! Asher hasn't been home since the 2 days and 3 nights in September (9/5-9/7)!

Oh, and Asher's counts today:

wbc 1.7
rbc 4.21
hemoglobin 12.9
platelets 169
anc 799 (dropping more and not sure why)
weight - 16.1 to 16.6 varying depending if he had shorts or shoes on

Day 20 Post Wound Surgery #1

Asher was really happy when he woke today, although did complain his tummy hurt again. A bit later he pooped...he still seems to mix up his tummy pains and his bowel pains and it is the same every morning (and sometimes evening now too). This formula that is going through his NG tube, 18 hours a day, is making him poop several times a day, and more like diahrea. They had switched to the "fiber" one but I don't think it has made much of a difference. Anyway, he kept telling me, "Go take your shower, Mom," when I kept coming back because someone else was in the bathroom at that time. Then when I finally was showering, I guess he talked to people that came in by him. But a couple of hours later he didn't seem to feel too well and said he wanted to go to sleep so I gave him my down pillow and he fell right to sleep and slept a bit even after Scott and the girls arrived for a visit.

Asher has been having lots of mood swings the last two days so I talked to the "pain lady" and we have decided to go back to a dose of 2.5 with the methodone. We had dropped to 2.0 two days ago, I think. He doesn't complain about pain, he's just very irritable, so I think that is the pain talking. I agree with her, it was good we figured this out today so we could decide on a good dose for him to have at home. She also said this is a low does; she is surprised he hasn't needed more pain medicine. Oh, and she told me she got a good anesthesiologist for tomorrow that will give Asher something to wake him up slowly....crossing my fingers it goes well tomorrow.

We aren't exactly sure why, but the walker for home was delivered to the hospital today and the VAC and all the dressing change supplies were delivered here, too, tonight. I'm thinking tomorrow they plan to hook Asher up to the rental VAC for home (quite small compared to the hospital one) so I can get familiar with it and make sure it works. So maybe that is why it was delivered here. Since all dressing changes will be done Monday, Wednesday and Friday, at the clinic, I'm hoping I can bring the supplies there, but I need to check tomorrow. That's what they decided on for the dressing changes, to use a drug (that starts with a "C") in clinic, starting next week, instead of doing it like they did yesterday. The nurse practioner told me today she thinks that will be less traumatic for him. The nurse practioner said she has her discharge orders ready and all she needs to do is push a button on the computer after hearing what the plastic surgeon says tomorrow afternoon. If we are able to bring Asher home, we will be doing that around noon or 1pm on Saturday and the home nurse would come before the 5pm antibiotic needs to be hooked up.

Asher is asking for food lately. Tonight he asked for a cheeseburger, chicken nuggets, french fries, and cheptchup (ketchup). I'm sure he wanted McDonald's, but since I don't have a car here while I stay here, I had to order it from the cafeteria. He took a bite of a french fry dipped in ketchup, chewed it and said, "ICK" and spit it out. That was that. He does like to drink mountain dew though (maybe 2oz per day), which is interesting because he never liked it before chemo! He also sips whole milk (maybe 1oz total per day).

Today Asher walked holding on to ONE of my fingers with his left hand and pushing a toy vacuum with his right hand. He did GREAT! His balance is really good and he's so strong. He does still need his walker, though. The physical therapist said she feels very little resistence in his ankles/feet now. He runs at a pretty good speed with his walker. He is an amazing, AMAZING little boy. I am SO PROUD of my little boy's willpower and drive. He's really an inspiration!

Asher goes really fast with his walker now....I almost can't keep up with his pole (he hasn't been unhooked the last two days). I did realize, today, that his VAC can sit on the bottom part of his pole, so at least I don't have to carry it and push the pole and make sure Asher doesn't lose his balance. The playroom was closed this morning when his Daddy and sisters came, so the kids played a bit in Asher's room, with the little room there was on the floor. But Asher was able to play in the playroom this afternoon. No nap today, so I laid down with him around 7pm and he fell asleep. He has woken, upset, saying, "I don't want to" over and over twice since then and I just had to rock him back to sleep in my arms. I was told, "We're going to make tomorrow go a whole lot better than yesterday" by every doctor or nurse that talked to me last night and today. Asher's "dressing" change (that's what they call it....ripping the tape off, removing the sponge, putting a new one in, and then retaping and setting the vacuum on it) will be done downstairs in the recovery area of the OR and he will be 'basically' out for the procedure with a short-term sleeping drug....I'm not good with names like Scott, so I can't tell you what it is exactly. It will be at 9:30am and I hope there isn't anything major to report tomorrow. His formula NG feeds will stop at midnight and he'll get extra fluids the rest of the night.

As for being at the hospital as much as I have....it is OK. I miss the girls, a lot, but my heart tells me I need to physically be here with my little boy right now. Even after being here almost three weeks straight, I'm still getting the comments, "Oh, Scott gets a break today" and "Oh, I didn't expect to see you; I usually see Dad," but I am also starting to receive some support here, from other moms, from nurses, from seeing the smiles of other kids, from seeing how the kids fight and live... Asher's nurse that was here the night I heard "life threatening" and was crying in his room while waiting for him to come back from surgery, has always given me a little side-hug when she sees me now. When I walk the halls with Asher, everyone says "HI" to him, even a Dad of a little girl that was just diagnosed with bone cancer last Thursday. Tonight, in the hall by the cafeteria, a grandma of a little girl with leukemia stopped me with, "How's Asher?" Her granddaughter found a match for her bone marrow transplant, which will be 11/3. I've been keeping to myself a lot, because somehow I think that will keep me safer, safer from hurt or something, who knows, but now I know I need to break through that more. I still cry. I cry about the pain my child is in, cry from fear, cry at seeing other children going through pain, but I know somewhere inside I'm growing and it will all mean more to me someday. Ah, I'm rambling, now, as I do most of the time (see my long posts every day), but I just wanted to record my thoughts today to see how they change in time, as I already know they have changed a lot because before I didn't want to talk to anyone about anything while I was at the hospital and now I'm okay talking to some people....