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.

Day 38 of Chemo Round 3 & Day 10 post 1st Wound Surgery

Thanks for all the comments and emails you sent me with thoughts/advice about Asher going home. There is no definite answer yet, but we're starting on a path so Asher can go home, soon, if all goes well. One of the main things, as far as meds are concerned, is Asher needs to be off his PCA....so they weaned him off his morphine today and at 8am tomorrow it will be gone. They are replacing it with a pain med that can be given via NG tube.

The weekend nurse practioner thought like a couple of you, get me doing hands on while I am here so we can show the oncologists I know the stuff and did it before going home. So, yesterday I ran three antibiotics and flushes (one nurse supervising), did his PICC Line dressing change (two nurses supervising), did his head dressing change (2 nurses supervising), started his NG tube feed (formula), and, since he threw up his NG tube at 7:45pm, I put in his new one at 9:30pm (with three nurses supervising). Today I did his head dressing change, again, this time with the plastic surgeon supervising. I also started his NG tube feeding and gave meds/flushes via his NG tube (with one nurse supervising).

It was cute, today, when Asher talked to Scott on the phone he said, "Mommy put my tube in. I like mommy to do it, not the nurses." And, a few minutes before that he was telling Scott about his head dressing change and said, "Mommy had gloves on, when my hat was off, she put my bandaide on."

During his head dressing change today, I noticed his head looked very different. I couldn't really see the bone because there was a lot of fluid that built up there. The plastic surgeon said that is normal when kids start to get more active and move their heads a lot. She said it is OK right now but something we need to really watch. If it gets worse, they are going to have to do something about it (not going to guess what, but another surgery for sure).

I have been told many things the last couple of days. I just found out today that the neurosurgeon is very concerned about the bone flap that has been exposed because he did not put back the original dura after the craniotomies. I'm not sure I said that technically correct, as I got this info from the plastic surgeon, not the neurosurgeon himself, but that's the jist of it and he's very concerned about infection, still. The plastic surgeon said she will not "close" the wound yet because of this worry. She said the exposed bone should get more pink as it heals and that would be something they want to see happen (of course, now with the fluid build up, not sure you can see much of anything). The neurosurgeon wants to wait quite awhile for healing before another surgery....and even longer before chemo....I have no idea what number of weeks we're talking here. Basically, it is several people (oncologist, neurosurgeon, plastic surgeon, and head start protocol doctor) with a lot of different thoughts, worries, concerns, and they need to all talk and come to some kind of "plan."

I'm not real optimistic these days as far as "plans" are concerned. As we can see, planning is difficult when we just don't know how Asher's body will react to a course of chemotherapy. I really am having a difficult time with the unknowns right now. I'm sad. I'm sad that my son has a hole in his head. I'm scared. I'm scared the tumor is going to take advantage of this break from chemo. I'm frustrated. I'm frustrated because I have no control and feel so helpless and I know all I can do is love him and try to do what is best for Asher today, which feels like not enough. I have to trust. Trust the doctors will choose the best course of action for Asher's treatment with all their expertise. All I can do, as I said, is love Asher and do what I think is best for him today.

So, like Scott said to me, even if we can't take Asher home, where I need to take care of him, I feel like I accomplished a lot and spoke my heart. I've done a lot of difficult things in my life but nothing has been as important to me as being a mom. Cancer moms (and dads) are expected to do a lot of things, including giving shots, hooking up IVs, and doing dressing changes at home....no matter if it is exhausting, it is important to remember this is all short term, kind of like having a newborn and I've done that before, times three. They have always told us that home is safer as far as less exposure to illnesses and kids heal better at home (that's why Asher was always sent home after his craniotomies so quickly) and we will have clinic visits and we always have home health to call or the hospital nurses or clinic to call. Regardless of what I want, the doctors and nurses won't let me take Asher home unless they believe he will be safe.

Asher's counts 10/16, 4am, finally going back up:
wbc 2.0
rbc 3.28
hemoglobin 9.6
platelet 82
neutrophils 70
anc 1420

Day 37 of Chemo Round 3 & Day 9 post 1st Wound Surgery
Just a note: Even though Asher is done receiving actual chemo for this round, we're still calling this chemo round 3 because, honestly, we're not sure what else to call it right now and also, his platelets aren't over 100, so he wouldn't be able to start a new round of chemo anyway.

Asher is smiling and giggling and laughing again! Such sweet sounds to my ears! We had fun yesterday playing.

Right now his meds are:
Claritan
Colace (laxative/stool softener)
mouth care stuff (2)
antibiotics (2 around the clock and 1 one time a day)
morphine via PCA
formula via NG tube for nutrition since he isn't eating yet

They are continuing to lower the continuous morphine every day or every other day and Asher is doing fine with it.

They had to put in a new NG tube yesterday evening because he threw up the other one at 6:30am....he was VERY upset about this....the two nurses finally got it in by laying him on his side and holding him down....so hard to watch. That's another thing....the nurse practioner said if I were to take Asher home, I'd have to learn how to put in a NG tube in case Asher threw his up. I'm thinking....can't the home health care nurse come if he throws it up and put in a new one for me? Just thinking too, we need to see if the insurance company will cover the antibiotics for home, as we have heard sometimes you must be hospitalized for insurance to cover them.

Asher is starting to show interest in eating. He asked for a cheeseburger yesterday and Scott forgot it when he brought me dinner and Asher called him (I dialed) on his cell phone to tell him he forgot his cheeseburger. So Scott was by McDonald's and stopped and then came back and I ran down to get it and Asher was happy....he held it but didn't eat it. He likes to hold food and cups of water or juice or milk. He gets rather protective of it if you try to take it and throw it away after 2 hours of it sitting there. We know Asher will waste some food, maybe a lot, but these are the first signs/steps to him eating again! I know if we took him home he would start to eat sooner than he will here.

Asher's counts from 4am this morning:
WBC 1.6
RBC 3.47
Hemoglobin 10.0
Platelets 86 (he just got a unit yesterday again)
ANC 832

Everything is dropping as his head continues to heal.

I put Asher to sleep last night around 8:45pm and it is now 9am and he's still sleeping. Asher's nurse sat in here while I went down to shower and get breakfast. Not sure what the day holds today, probably just playing in his bed. The nurse practioner brought me a rocking chair though and Asher and I sit in it to watch Curious George movie (he isn't sick of it yet, and surprisingly, I am not either).

Hope you all have a good day!

***9:30am***
Asher is up....he wanted to watch George, then talk to Daddy on the phone (they had a good talk) and then call Grandma Val (got voicemail). He looks good and is smiling and talking away.

It is interesting, now that the chemo is on hold, to allow his head wound to heal, I want to bring Asher home. I'm on my third day of asking to bring Asher home and I'm getting the, "We think you'll get worn out" comment and "We have to see when he will have surgery" comment.

I'm creating a spreadsheet right now so I can prove to the oncologist that I can care for Asher if he comes home. He needs 2 antibiotics, NG feedings, and morphine. Vanc over 1 hour every 8 hours, Ticar over 1 hour every 6 hours but not at the same time as the Vanc, and feeds over 12 hours once a day. He will get the antibiotics till 10/28. He can also start eating by mouth if he wants again and I think he would if he came home. He is still vomiting one time a day, but they think that is because he was throwing up several times a day for three weeks.

From what I remember, surgery can't happen for at least two weeks from 10/9. But several people (surgeons) need to get together to talk about this.

Maybe the only thing that would be troublesome is driving to the hospital every other day for blood draws to test for platelets (since they want them above 40 and they have run low again today).

I would also have to do his head dressing changes every day....as well as his arm (I think once a week).

So, that's where my head is at right now....I have so many emotions about where we are at with Asher's treatment, including some anger. We probably can't return to the Head Start III protocol and radiation is out of the question for some time now (although we had hoped to avoid radiation by doing Head Start III (agressive chemo and transplant)). I am trying to stay positive. It does take effort some days to stay positive, but it is all the hope I have. Hope Faith Courage Love....that's what is on the Angel Adventure T-shirt. It is beautiful.

*****Here's what I came up with*****
midnight Ticar start
1 Ticar stop/flush
2 Vanc start
3 Vanc stop/flush
4
5
6 Ticar start
7 Ticar stop/flush
8 NG feed stop
9
10 Vanc start
11 Vanc stop/flush
noon Ticar start
13 Ticar stop/flush
14
15
16
17
17:30 Vanc
18:00 P-antibiotic (once a day)
18:30 Vanc/Ticar/P stop/flush/start/flush
19:30 Ticar stop/flush
20 NG feed start
21
22
23

Does look busy....but doable....

Last night was pretty good. Asher woke up (I think it was 2am) and threw up. They gave him zofran. He got his antibiotics. Two diaper changes by me (he gets way upset if the nurse or PCT try to do it). He did complain of pain in the back of his head and had to push his PCA two times. He also seems to mumble in his sleep a lot (I was told that is the morphine) and as soon as he says, "daddy, mommy, mommy" I wake up, no matter how quiet he says it, even with ear plugs in. He went to bed last night around 8:45pm (back to a little normalcy with that earlier nap) and woke around 7:30am I think. He looks really good and his nose has only run two times in two hours, he even said, "Thank you" when someone brought in two packages to him this morning (he likes his mail!) and the guy said that was the first time Asher has ever talked to him.

The morphine dose was just lowered so we'll see how that goes.

I'm not sure if we should start the NG tube yet since Asher is throwing up once a day....

Scott is on his way with the girls soon and they will get to visit....Asher was a bit upset before bed last night because he wanted his daddy to bring the girls, so I told him when the sun comes up they would come. I was already able to shower at 7:30 while Asher watched Curious George (his favorite new movie) and I got to the cafeteria for some breakfast. It isn't all that bad here, now that I am getting used to the hospital more. Nice to not have to cook the food and just have it there waiting, although I realized I only ate one time yesterday, lunch. Just don't feel like eating much when all I do is sit here. Suppose that is why I am needing to go to the store and get some new shorts from losing some of this baby belly, finally, 4 1/2 months after Aubree was born.

I'll be heading home to be with the girls, then, later today and we have our walk Saturday morning....nice and early and on the other side of town....the girls and I can probably come see Asher after the walk since we'll be so close to the hospital and then I'll probably head back here Sunday to swap with Scott again.

I think the plastic surgeon team will be looking at Asher's head wound Friday or Saturday. I pray it is healing well.

4:15am counts:
WBC 3.1
RBC 3.99
Hemoglobin 11.5
Platelets 10
ANC 2604
(remember, we had stopped neupogen, so the counts were likely to drop, especially with a huge wound to heal)

Weight: 16.7kg

Thankfully Scott spoke up to the doctor yesterday, asking why Asher's counts weren't checked....so they did draw blood this morning and this morning his platelets were only 10. "Normal" is 140-450. So, he got platelets this morning.

Asher woke up, with encouragement by me, around 10:30 am this morning (after going to bed around 11:30pm last night). He threw up right after sitting up. I, again, felt so bad for waking him up but he had to have his morning meds.

Asher's nose started running when he was in PICU, 9/25. It is now pretty constant for about 3 hours after going from laying on his tummy to sitting up. It also runs more when he gets whiney/fussy/upset. Today was the first time they seemed concerned about it and have now given him Sudafed and Claritan. They said if this doesn't dry it up that they will swab him and put him upstairs on the infectious floor....so, here we go again, repeat of what happened after round 1....and interesting enough, the runny nose started in the PICU that round of chemo, too.

I put him on his tummy around 2:30pm so he could nap and he fell fast asleep. At 5pm he woke up and I gave him a bath in bed and tried to massage his legs and feet a little as I did it. Physical therapy didn't come today. After his bath he walked about ten feet in his room.

We may start the NG tube tomorrow, but for now he's still getting TPN and Lipids. Also, we're lowering the continuous morphine amount tomorrow morning, but still using the PCA so if Asher has pain he can push the button for more morphine. He's on two antibiotics and they want to use them for three weeks from 10/7 (which was the date they got a positive bacteria culture from the head wound tissue).

That's all I can think of for an update.

We don't have counts from today because they won't be drawing blood to check counts daily now.

Still no fever and Asher looks good.

He is still having daily physical therapy for his legs and feet, wearing his boots, standing and taking a few steps a day. After I carried him around a bit after his short walk, Asher saw a tricycle in the hallway and wanted to ride it. He was able to pedal a bit with me pushing him a little bit.

Asher threw up today, just out of the blue, while playing Game Boy, and it was quite a lot of stomach bile. Since this happened, they will wait at least 24 hours and then discuss putting the NG tube in for nutrition and stopping TPN.

Asher is very very sleepy. Last night he basically slept from 6:30pm to 10:30pm and was up for an hour and then slept 11:30pm to 11:00am. Around 5:00pm today, when the social worker and the oncologist came to talk to me, Asher got upset to see them and covered his eyes with his hands and ended up falling asleep. I encouraged him to wake up around 9pm because he had some medicine to take, mouth care to do, and the nurse wanted to change his dressing and head wrap. Two times he refused to wake up but then suddenly he wanted to sit up and he was ready to play.

Asher wanted me to pull out the rest of his eyelashes tonight. He had two on one eyelid and one on the other. They came out with just a little tug. So, no more eyelashes.

I let Asher stay up till 11:30pm then because the roommate was up anyway, playing the video game machine pretty loud and had the TV on and then housekeeping came in to change garbage....but then when I told him it was time for bed and he fell fast asleep, even with all the noise....which is what I am going to try to do....so thankful for ear plugs, they help a little, otherwise it is so hard to sleep here.

We are blessed for a simple, enjoyable day today.

Thank you again, for all those that have sent us messages of prayer and hope during the past challenging days. They have meant a lot to us!

Asher and I had a good day Sunday after his surgery, between his naps. We watched the movie Curious George three times, I think. After the 2nd time he said he wanted to sleep on me! So....I had to get in this weird position so he could get the side of his head on my belly (which is soft enough LOL) and he fell fast asleep. He's wonderful, just gotta love him!

Anyway, he slept well through the night then, I had him lay down for the night around 10pm, even when they did their vitals and diaper changes. He's doing well sleeping on his tummy (good thing he doesn't have his Ash-Split catheter anymore or that would probably hurt to sleep like that). I have noticed he prefers (and it is easier) for him to sleep on the left side of his head/face. When we make him turn his head the other way, so he is laying on the right side of his head, he can't actually go all the way to his ear on the bed, so part of his mouth and nose is into the bed. He doesn't complain too much about rotating as long as I'm the one that asks him to do it and I put his toys in front of his face on his bed so he can see them. If the nurses ask during the night he cries and says no and "mommy mommy."

I let him go a bit too long this morning before waking him after 9am for a diaper change....his diaper overflowed. He was so grumpy then too, for almost two hours. I just hate waking him up. It didn't help that he needed stool softener (started yesterday because we all realized he hadn't had a bowel movement in I can't remember how long!! yikes! and he complained it hurt really low in his abdomen....morphine is constipating....anyway). He did swallow some of the stool softner but then tried to get himself to throw up. He was pretty upset.

The 'pain' nurse came in and I told her I didn't want Asher's morphine lowered yet. I don't think he is ready. He is still getting continuous morphine AND needing to push the button for more.

He was also upset that I said I was going to go home today and Daddy was going to come....he just kept saying, "NO, Daddy stay home with the girls." I just kinda needed a day at home and it was so weird to have been away from Aubree for 3 full days....so then I asked Asher if he wanted to see Alexa and Aubree and he said, "No, I want to see the girls." I guess Scott and I have called Alexa and Aubree "THE GIRLS" for awhile now and he likes to say that now. So I told Scott to bring them up.

Alexa came running in, "HI Asher. Hi Asher." She was so cute. Wanting to sit by him in his bed. Asher wanted baby Aubree to sit by him but he realized he couldn't get her to sit up and he got a little mad, but then was okay that she could lay there with him. Alexa told the doctor that was in to check Asher when the girls came in that Asher was sick. Asher yelled, "I'M NOT SICK!" So the doctor went on for about 4 minutes to Asher telling him he had to smile for his sisters when they came or they would think he was sick....it was actually starting to irritate me....here's a boy who hasn't walked more than 6 steps in several days or walked much at all in three weeks, hasn't played in awhile, hasn't eaten in awhile, had three surgeries in the last three days, was having pain in many places of his body, etc., and he was supposed to smile? Arg. Sometimes I think the doctors don't think about what they are asking of my little boy. I think he is amazing anyway, because he did smile on Saturday (first smile in three weeks!). And, like many other people noticed, Asher sits up, fights through the pain to be in the here and now, just to be awake. I'm glad he took some good long naps though, he needs his rest to heal.

9-8-06

home, clinic, hospital stay
to start chemo round 3
headed out to the car



car ride to clinic
- typical sibling spats



being silly at clinic

doc checking leg strength



9-11-06 -
playing his Game Boy



9-12-06 -
playroom volunteer reading a dinosaur book to Asher



9-15-06 -
Playroom volunteer took Asher and Mama's picture!



Nurse listening to Asher's heart.



The social worker brought a donated Kenzie Kase
to Asher!

Here he is drawing on his mini-doodle pro.



He held it up and said, "It says HI!"  (Mama
had just written Hi and showed it to him and then erased
it....so he was copying me!)



He really enjoyed playing with the mini
Incredible figures...



...especially the "Baby" one as he called it.



The book got a few seconds attention 

Gift from 2nd cousin
Danielle who is in college
in Milwaukee:

9-16-06 -
Molly visiting Asher



9-18-06 -
sleeping



9-19-06 -
Holding these two toys while he got his NG tube for his CT scan
of GI



9-24-06 -
Fevers &
mouth
and head sores

9-25-06 in PICU

10-2-06 - getting his PICC Line



10-5-06-just not too happy today

10-5-06 - always says his arms hurts
from the PICC line and the tubes tugging

sweating off his fever(s)

10-6-06 - Asher's "boots"




Cuddling in bed with mom:


10-6-06 - Before Surgery

Day 30 of Chemo Round 3

Asher woke this morning with some swelling in his face. He is retaining some liquids and I was told they would use Lasik after surgery to remove some of that liquid. Asher has been pushing the PCA button for his morphine a little bit more often since about 3am.

Asher had his third head wound surgery this morning. He did well. They put the Integra® Dermal Regeneration Template on....before doing so they used my digital camera to take photos. Let me just say I am so shocked at my son's wound. I'm not the type of person that passes out from the sight of blood or wounds, but realizing that is the sight of my little boy's head just made me a bit ill-feeling. I didn't realize it would be so odd-shaped and large of an area (even after they said 12cm x 6cm it seemed much larger in reality). After surgery Asher said, "I don't want to do that again." I told him hopefully he won't have another surgery for awhile (we're thinking 1-2 weeks).

The culture from the tissue from Friday's surgery did grow "gram negative rod." It is the same thing that had been showing up in blood cultures. However, all the cultures from his blood have been negative for bacteria since 10/3. He hasn't had a fever since right before his surgery on Friday (38.7 after they had given platelets).

The CSF from the spinal tap (lumbar puncture) did have 1 white blood cell, but the neurosurgeon said they consider that "normal." So at this point they don't believe there to be infection in the brain/spinal fluid.

When he got back up to his room he said, "I don't want to sleep." He is sitting up watching Winnie the Pooh right now, with a blue sucker in his mouth and holding three in his hand. His swelling is a bit more in his face and I also see some bruises on his face and forehead. He also had some bleeding from the gums at a bottom front tooth during surgery. I got him to swish and spit some mouthwash to clean his mouth out.

(1:30pm - Scott went home to be with the girls, Asher tried to push his PCA morphine button but it was locked out (note: talk to pain doctor about increasing his dosage), Asher is now sleeping.)

This week is a waiting time - wait for the wound to start to heal.

His counts from 4am this morning:
WBC 4.2
RBC 3.8
Hemoglobin 10.9
Platelet 38 (he got some before surgery at 9am)
ANC 3444

Asher is recovering from surgery well.

Another part the two surgeons wondered about last night (in the center area) was dead, so they did have to remove more. They told us the opening in the back of his head is 12cmx6cm (oh my!!) and the exposed bone is 2cmx2cm. They aren't sure if the bone is okay for sure yet (or if anything is happening on the other side at the dura). They did say it did not look worse than yesterday. They said his spinal fluid was crystal clear.

The plan is for Asher to go into surgery tomorrow (maybe 10am-ish) to have Integra DRT put on the open wound of his head. Right now he has a special dressing that is stapled to his head, and is expected to bleed some tonight. Just a note: they won't be doing any reconstructive type of surgery for awhile.

The neurosurgeon recommended no chemo for at least six weeks. Asher's oncologist will be consulted on that as well.

Can't think of much else. I wanted to say with Asher's counts up and his super long afternoon nap, he was sitting up and even almost smiled one time before surgery. He was playing Game Boy right before going down at 8pm. His morphine is keeping him comfortable. I'm staying with my boy again tonight....I just can't leave him right now.

They will be coming to get Asher any time now for surgery (between 6pm-7pm). (Actually, they just told us they are delayed till around 8pm maybe....not sure....neurosurgeon is in surgery with another patient right now.) They will do more of what they did yesterday. I guess Asher may need this done several times before all the dead tissue is gone and his head is able to start healing. We don't know for sure about the bone yet.

Asher has slept almost the entire afternoon. Very sleepy boy.