See more photos from 3/13/07 - 3/16/07 in the Autologous Stem Cell Transplant Photo Journal #1

3-17-07
Still some red (back and forehead) but mostly "tan" looking, splotches of different colors, peeling by where his dressing change tape used to be) - Awake from 6am-12pm, watching TV, playing balloons, playing Sims2 with mom



Playing with Daddy (he came to visit for 4 hours or so) - painting his window with paints that child life brought in





3-18-07



3-19-07






3-20-07 - Asher receives FFP (fresh frozen plasma)


3-25-07


3-27-07


3-30-07 - Discharged at 6:45pm!!!! First photo is Asher waiting for the elevator to leave the 2nd floor at PCH. First time we ever had Asher WALK out of the hospital on his own two feet (instead of carry him or pull him in a wagon)! That's his special mask he has to wear now, when he is out in public or in really windy outside areas, until Day +100.

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

-----

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!

-----

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).

Chemo Round 6 3/5/07 - 3/10/07 (see Chemo Round 6 Photo Journal)
Days of Rest 3/11/07 - 3/12/07 (see Chemo Round 6 Photo Journal)
Receive Cells 3/13/07
-------------------------------

3/13/07 - Asher receives his FOUR bags of stem cells (from 10:51am-12:20pm)
Asher before receiving his stem cells

Childlife made the signs for his room

Opening the freezer


Removing one "cassette" (which holds one bag of Asher's stem cells)

Removing the bag of stem cells from the cassette

Putting the bag of stem cells into the "bath" to thaw

Still thawing and turning a darker red color

Checking to see if thawed (and gently mixing?)

Passing on to one nurse

Showing a bag (this was the smallest bag 1.9x10^8 cells) and label

That nurse brings the bag to Asher's nurse and they compare the I.D. on Asher's ankle band to the one on the label (for EACH bag)

Asher's nurse prepares the bag, attaching it to the tubing she has already primed (for EACH bag)

Asher's nurse hangs the bag on his IV pole

The infusion begins

Asher receives the stem cells through the tubing and then through his Broviac, almost immediately he has a terrible taste in his mouth (from the preservative) and begins to vomit

A syringe is used to get as many of the cells out of the bag and tubing and into Asher

Empty bag!


After it was over, while vitals were still being taken, Asher playing with a race track and three cars that child life gave him during his infusion

Truly LOVES this frog and lizard


3-14-07

Wanted to color with crayons on the posters childlife made him & Tracing his hand


Taking a nap


3-15-07
Really red/discolored skin
Playing with his train on the floor mat on the floor

Listening to mommy's ipod and then fell asleep listening to music



3-16-07
Really red/discolored skin
Fevers today





See more photos from 3/17/07 - x in the Autologous Stem Cell Transplant Photo Journal #2

Admit 3/4/07
Chemo 3/5/07 - 3/10/07
Receive Cells 3/13/07 - (see Autologous Stem Cell Transplant Photo Journal #1)
-------------------------------

3/4/07 - Admit to begin chemo round 6 / transplant
NOT happy at all to be back in the hospital

opening gifts from a friend of Grandma Eunice - loves the airplane

gets new dressing

hands are red - possibly from the Paliferim (not a sunburn thought to be previously because it was gone the next day)

does smile today


3/5/07 - chemo round 6 starts
got this car track from childlife

mouthcare

painting - also from childlife



playing playdoh - also from childlife

taking his first shower in the hospital and does like it


3/6/07
hitting balls with the bat daddy bought


playing car - from daddy



really upset - screaming and hollaring for daddy - mama cuddled him in her arms and he fell asleep

taking a nap



3/7/07
doing mouth care


playing cars



3/10/07 - 1 1/2 hours with Mom - LAST DAY OF CHEMO!!!












3/12/07

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....

9 days in the hospital this round - January 2007 - rest of the days at home!!

1/2/07 - playing in pre-surgery area

1/2/07 - after surgery (he got a BROVIAC), in PACU, napping, waiting 8 hours in pacu before getting admitted to a room on floor 2


1/2/07 - playroom was open at 7pm when Asher finally got a room assigned to him on 2nd floor

1/3/07 - Asher with a volunteer who brings in a teenie tiny train in a suitcase for the kids to look at - Asher loves it

1/3/07 - Asher riding a trike in the hallway of the hospital with daddy pushing his pole

1/4/07 - painting in the playroom

1/4/07 - playing in the playroom with baby toys

1/4/07 - making snowflakes with mommy, in his hospital bed, for Dakota

1/5/07 - painting wood cars with a girl in the playroom

---

1/12/07 & 1/13/07 - playing with baby Aubree at home

1/14/07 - Asher's BROVIAC

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1/15/07 - Going to clinic and then will be admitted for IV chemo for round 4
Asher is pulling his Kenzie Kase

1/15/07 - in clinic

1/16/07 - playing PSP & napping

1/17/07 - ASHER'S 4TH BIRTHDAY
running the volunteer's train

doing crafts in the playroom

eating lucky charms & napping

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1/18/07 - back home (after his 1/8" buzz cut)

---

1/24/07 - went to ER with a fever

1/24/07 - admitted, playing & napping in his hospital bed

1/24/07 - taking his mouth care (swish and swallow) by himself

1/25/07 - still in the hospital - have to stay at least 48 hours post-fever - watching his DVD player

1/25/07 - taking his own armpit temperature

---

1/31/07 - at home - hair coming out

after buzzing it down to 1/16" length and much of it rubbing off

1/31/07 - playing with his dinosaurs at home

1/31/07 - with Aubree

---

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.

October 2006 - November 2006

Head Wound Photos from an infection during/at the end of chemo round 3 (end of September and beginning of October) - I am not going to post the photos as images, just links, so if you are not wanting to see the images of how bad the back of Asher's head has gotten, you don't have to click on the links.
Asher's Head 9/24/06 - went to PICU with 105 temps and unstable blood pressure and oxygen levels
Asher's Head 10/1/06
Asher's Head 10/2/06
Asher's Head 10/3/06
Asher's Head 10/4/06 am
Asher's Head 10/4/06 am bandage
Asher's Head 10/4/06 pm
Asher's Head 10/5/06 am
Asher's Head 10/6/06 when the neurosurgeon looked at it and said TIME FOR SURGERY

10-6-06
First Surgery to remove dead tissue
from head wound area

Before surgery - after the neurosurgeon
was in looking at the wound and decided
it was time for debridement



10-7-06
Morning - needed oxygen


Tummy still enlarged:


Drinking ice water:


Playing Game Boy Advance before surgery:




A sucker and a Game boy....




A smile - hadn't seen one in awhile now!


Holding finger puppets that I got him:


Second Debridement - before going into surgery


taking photos with his camera


10-8-06
Swelling in face/eyelids this morning


Large belly this morning:


Third Surgery for Head Wound
from gram negative rod bacteria
which showed positive today
from Friday's tissue culture

In the OR - this is the bandage over the Integra:


After surgery - back in 2nd floor room:




10-10-06
Girls visit - first time in several weeks since Asher's counts were so low for so long




10-10-06
Aubree started trying to eat a sheet of Asher's stickers and he got upset at her for doing that



10-12-06
Asher's feet still hurt when he walks or pushes his bike, but he is willing to try when I make him do it....the more he does it the more loose he will get.



Girls came to visit again:




10-12-06
These two photos are of the hole in Asher's head which has Integra on it (this is 4 days after the Integra was put on):
photo 1 - click here
photo 2 - click here

Dressing change over Integra (just gauze now, yellow part is gone):


Prize that Asher picked from the box for being good in the treatment room:


10-14-06 - smiling, giggling, and laughing again
Asher's face is still pretty swollen:




10-16-06
We were playing in his bed and the nurse took our photo:

Afternoon nap:

Talking to daddy on the phone:


10-17-06
Asher has lost most of his eyebrows now, especially the right eyebrow (has maybe 5 hairs left) and the left one is on its way to that. He is smiling, giggling, playing catch, and today he started taking steps on his own. Today was his first day off of morphine in several weeks! Also, Daddy and the girls came to see Asher today and since he is still on droplet precautions (isolation) he is stuck in his room but they had a good time there. Asher's nurse even let him be pole free for several hours in the early afternoon.

Walked about 4-5 feet on his own:

Playing catch with a big balloon ball with mom (and pretending it was a pillow):


10-18-06
The physical therapist brought Asher a walker today. At first he didn't think much of it. Then Alexa went walking with it and then he wanted it back and walked and walked. He even went out of his room and got upset when I made him come back because he is still on restrictions (been 6 days now) for his runny nose (which isn't running much anymore). Asher played with his sisters again today. He has been telling daddy what Halloween costumes to get him and the girls (he wants to be a ghost and Aubree should be a pig (or a pumpkin) and Alexa should be a kitty cat).



10-20-06
Surgery #4 this month
After initially waking up from surgery in the recovery room - sleeping on mom

Eating pretzels and drinking mountain dew!

Vac Therapy System


10-21-06
Sleeping in all his tubes:

Lots of smiles and joy today:


First day in playroom in weeks!


First thing Asher said when he woke this morning is he wanted his sisters to come. Several hours with family today - daddy's 33rd birthday:


10-22-06
Just Asher and me today....
Asher's NG tube got yucky from surgery on Friday so I pulled it out and put in a new one today.

He had a great day of walking, biking, painting and playing. Asher's pump VAC fits on the front of his walker, but is really too heavy for Asher to walk with it like that so I carry it.




10-23-06
The speech therapist working with Asher by "reading" a book together (more like talking about the pictures in the book)


10-27-06
Silly and Cute Boy


Head Dressing Change:
head wound
Eating a cookie still kind of asleep after anesthetic for head dressing change....then sleeping holding cupcakes....he slept until after 6pm from the 2pm procedure:


Playing with Aubree...."floating" a butterfly in the air for Aubree:


Walking with Daddy holding a finger....but he also took 4 steps all on his own!


10-28-06
Discharged from hospital to go home to allow the head wound to heal more:

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.)





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....

Asher is asleep right now....late nap again....he is receiving a unit of blood right now. His hemoglobin isn't too low, but low enough where the nurse thought he could use a good boost, especially with his wound bleeding some.

I am trying to "recover" from an emotional day....where I just felt like I carried around my hurt, anger, frustration, sadness a bit too long....Asher never fully recovered either (he was irritable all afternoon and wouldn't nap)....I'm talking about the head dressing change. That huge piece of tape that has to come off every other day, the sponge that has to be cut to the shape of the wound and shoved back in there, then new tape put on and a vacuum attached to his head....my words can't even describe how horrible today's "dressing" change went. The wound nurse showed up to do it, and at first thought she was going to do it in his room and I said I wanted it done in the treatment room, where it was more sterile. So we walked down there and Asher thought he was going to the playroom and I had to break the news to him when he saw the treatment room....bad start right there. I asked that child life have someone come play with Asher during the procedure. Then one nurse thought he was going to be okay with Versaid (spelling?), given only minutes before the procedure started....well, it didn't calm him or anything, it was horrible. My son, screaming, squirming, saying, "Mommy mommy mommy! Tell them to let go of me. Let go of my head!" and screaming some more. This went on for what seemed like forever, of course, forever it wasn't....but it lasted too long. I don't think too many of the nurses knew what to expect....I've been told wounds like Asher's aren't common in chemo kids. I was worried the sticky dressing (tegaderm stuff) wouldn't stick cuz his head was all sweaty from screaming and crying, but it stuck and is still sticking, thankfully. Just glad that is over and not looking forward to Wednesday's, however, I have already talked to the nurse practioner and told her how I felt today and what a mess the procedure was....no masks over noses and mouths, Asher not sedated enough, and just too many people in the room. She agreed, it was a nightmare. She added that the wound started bleeding and dripping down his back. I also told her I have no idea how they think this will get done at home with one nurse coming to our home. I've already decided it will have to be done in clinic or somewhere at the hospital, not in my home. The last thing I want is to traumatize Alexa too....

---phew---now that I got some of that out, I think I do feel like the stress from all of the emotions is starting to release from me....I'm sure a good rest tonight will help, too. We do have roommates again, and I think they are here all week, but they are really nice people and I think it will go okay (and I'm getting used to being here, even to sleep, because I have been here so much the past three weeks, even when I get woke up, I can fall back to sleep pretty fast).

Oh, also, a speach therapist came to read and play with Asher today. She noticed how much more he talks. His trouble letters (b, d, and f) are not consistent problems, either. Sometimes he says them correctly, and other times not, especially in phrases or sentences. If it is a single word he almost always does it right (with a few exceptions, like "balloon"). He had lots of fun with her. (photo to come)

The physical therapist ran into us in the hallway during one of Asher's walks today. Today's nurse said there weren't "orders" to unhook him so she couldn't do it, so I had to pull a pole and carry the VAC while Asher walked with his walker. It went okay. I think my arm muscles are getting bigger. Anyway, the physical therapist though Asher was doing better. I forgot, Asher sometimes says, "I'm a penguin" when he is walking....I'm not sure where he got that from or why he says it, but that is how he walks, like a penguin.

5am counts:
wbc 2.2
rbc 3.13
hemoglobin 9.3
platelets 136
anc 1342

ETA: Grandma Val stopped in for a visit tonight from 7:30-8pm and Asher was really glad to see her!

It was just Asher and me today....and we had a pretty good day. Up around 7:45am when the PCT came in to get stats and we decided we had enough sleep and got up. Today I did Asher's PICC Line dressing change and Asher's NG tube got yucky from surgery on Friday so I pulled it out and put in a new one today.

He had a great day of walking with a walker, biking, painting and playing. Asher's pump VAC fits on the front of his walker, but is really too heavy for Asher to walk with it like that so I carry it.

Asher had a nap from 4:35pm-8:25pm, about. Not sure why, but after his nap, Asher started sneezing a lot and his nose is running a ton....guess we'll see if it is still doing it in the morning. I hope not....he's starting to have fun walking and exercising.

Asher isn't eating or drinking yet and no counts from today (they are back to doing them every other day right now).

It's 10:45pm and we're going to go to sleep now.

First thing Asher said when he woke this morning was, "Call Daddy to tell him to bring sisters, and Aubree too." So we called him and said happy birthday and could they come for a bit to visit.

Asher walked out of his room with his walker today, and walked quite far before getting too tired. He was able to go into the playroom too. He painted and played on the computer. He also went for a stroller ride, which was easier for mom as his VAC got a bit heavy carrying it around. It was nice to have the entire family together for 2 1/2 hours for Scott's birthday. (Added photos to the photo journal.)

He missed his nap due to the visit and then wanting to play video games, so he fell fast asleep at 6pm and did stir several times between then and now (9:30pm) and now I'm going to go to sleep. He should sleep through the night.

The neurosurgeon came to see Asher's head today and I talked to him a bit. First, he isn't 100% convinced the bone is dead, yet. He wants to be SURE it is before removing it, and before removing it, he wants the exposed area to be much smaller. The VAC system is under constant pressure, sucking out bloody fluid....it closes the wound, faster, than without it, although the scalp is tighter than other parts of the body and no one here has experience with this system on a scalp. That is what they hope. That the area of the open wound, or exposed area to the brain (if the bone flap is removed) will be so small that they can use that muscle and tissue that is there to close it (and not use some from another area of his scalp). I hope that makes sense. It is hard to put in words, but I do understand what the doctors are hoping for.

5:15am counts:
wbc 2.3
rbc 3.24
hemoglobin 9.4 (might need blood soon)
platelets 108 (woohoo!)
anc 1748

weight = 16kg

All of Asher's eyebrows are now gone and new ones have just started to grow in. His eyelashes started growing in a few days ago too and you can see them when you look close, sitting at his side. His head is also a tad fuzzy....lots of tiny blonde hairs growing in.

Day 40 of Chemo Round 3 & Day 12 post 1st Wound Surgery

The physical therapist brought Asher a walker today. At first he didn't think much of it. Then Alexa went walking with it and then he wanted it back and walked and walked. He even went out of his room and got upset when I made him come back because he is still on restrictions (been 6 days now) for his runny nose (which isn't running much anymore).



He has been telling daddy what Halloween costumes to get him and the girls (he wants to be a ghost and Aubree should be a pig (or a pumpkin) and Alexa should be a kitty cat). I hope we can have him home for Halloween.

I'm so bummed we can't take Asher home at the end of this week as thought. On Monday, the plastic surgeon looked right at Asher and said, "Do you want to go home?" He shook his head YES and his eyes glowed. So, when I got done with the dressing change on Monday he started picking things up off his bed and putting them in his arms and lap saying, "This goes home, this goes home...." I then had the fun job of telling him, "We're not going home just yet, honey. Maybe soon." He cried and cried. Each day since he has talked about it. If only I could have caught the plastic surgeon from saying what she did. I have talked about the bad 4 letter word (HOME) in front of Asher, but never directly at or to him. Today when Scott and the girls left he said, "I want to go home too." My poor little boy....

I did his head dressing change a bit earlier today and then put him down for a nap. Last night's nurse woke Asher up (thus me too) too much....I hope we get Jaclyn again soon....(added note: we had Heather tonight and she's AWESOME....not one thing beeped that I heard all night....Asher and I slept great)

4am counts:
wbc 2.2
rbc 3.37
hemoglobin 9.8
platelets 87
neutrophils 53
anc 1166

Day 39 of Chemo Round 3 & Day 11 post 1st Wound Surgery

The girls and Daddy came today and everyone had a really good visit and played well together in Asher's room. We have been quite fortunate to have a larger room for Chemo Round 3 and even though Asher is confined to his room, he is able to walk in circles and ride a little push bike. Today he did well with the physical therapist and later he wanted to go play with Alexa on the floor and walked away from me about four feet all on his own (did need help to sit down).

Asher's 2:30am counts:
wbc 2.1
rbc 3.38
hemoglobin 9.8
platelet 84 (finally remaining a bit more stable)
neutrophils 55
anc 1155

Asher came off of morphine just fine.

Today was the first day (saying this 5 hours before the end of the day though) that Asher didn't throw up. I forgot in my post last night to mention that Asher took three small bites of pizza (bit of cheese and crust, not much sauce) yesterday and then when he realized it was gone he said, "Gotta call Daddy to have another one delivered." He's so smart and too cute! Otherwise, he isn't eating or drinking.

I did his head dressing change again today. The fluid looked about the same. The neurosurgeon came in this evening (after I did the dressing change) and peeked at the wound....he said that he and the plastic surgeon want to take another look....he said probably this Saturday. That means, SURGERY, this Saturday. He mentioned something about a "spongey-type" of covering (instead of the Integra cuz of the fluid) and basically said the plastic surgeon would explain it to me much better. Just an hour earlier I heard that the goal was to get us home by end of the week. So....not sure now....

That's the update....back to playing with Asher. He's had more energy since the morphine went away.