Click to see the back of Asher's head from this morning. The scab is all gone and that is all scar. The scar is a bit dry and he still itches it sometimes.

Visit with the plastic surgeon went smoothly. Asher's head wound is still scabbed, but she considers it healed and ready for chemo on January 3rd. He still needs one thing of Telfa gauze and his 'hat' to protect it from getting hit or knocked and getting trauma to it. She will come check on him in the hospital, too, once Asher is admitted, which makes me feel better. She asked me if Asher knew what was going on and I said no. She said, "He's not going to be happy," while she adjusted his 'hat' to make it look nicer. Then I got tears in my eyes and she asked if I was okay. "Sure," I said. She said, "I'm sure it is hard, thinking, here we go again." And then she handed me a box of kleenex and told Asher, twice, that "It's okay," because he was looking at my eyes, filled with tears, with a lot of fear in his eyes. I tried really hard to quickly swallow all the emotion....I'll save the good cry for tonight before bed.

The funny part of today was telling Asher when we had to leave for the doctor. He said it was my turn and not his. He said, "I don't have a baby in my tummy." He cracks me up. At the plastic surgeon's office, at one point while the doctor was talking to him, he just turned to me with a HUGE grin on his face and said, "I love you Mommy," and touched my arm so gently. Then he turned to the doctor and said, "Mommy has a baby in her tummy," and patted my belly. He also talked to the doctor about his birthday, holding up four fingers, but again, didn't know what day it is or how long away it is.

I did discuss with the plastic surgeon about weaning Asher from the methadone, telling her he was now down to 1.2mL every 12 hours from 2.5mL that he was getting awhile back. From her point of view it didn't seem to be important for Asher to be totally off the methadone to go back to chemo, but she said going with my gut was the right thing to do. She also said he looked good and didn't look to be in pain or bothered by the weaning. She told me to ask Asher's oncologist what he thought and if it came down to it, the pain team can help wean him or take care of it once he is readmitted, especially since he will be getting the Broviac and will have some pain or discomfort from that surgery.

Schedule from today:
tomorrow, hearing test
this Friday (12/29/06), brain and spine MRI (rescheduled to 10am)
then day after New Years (1/2/07), 9am surgery to remove PICC Line and put in Broviac Line, do spinal tap while he's still under anesthesia, then go to post-op and then right to admit and start getting pumped up with fluids to begin chemo 1/3/07.

It has been 6 1/2 months since Asher's last haircut. It has been 5 months since Asher went bald (during his first round of chemo). I decided it was finally time to give Asher his first haircut since his hair grew back. Scott kept saying he liked it long. I kept saying, "It will be rubbing off on his pillow case in the hospital in 3 weeks." I asked Asher and he was a bit excited for me to cut it. I used the clipper. 1/8" guard. Didn't cut any on the top of his head. You can see the scar on his right side from the shunt surgeries (he no longer has a shunt). You can see on the left side where hair isn't growing. I was wondering if that was due to stretching from the VAC, but I'm not sure.

12/25 after haircut:


12/21 before haircut:

Since we celebrate Christmas on the 14th, tomorrow will just be another 'weekend' family day for us. Not sure our plans yet.

I took Asher to a movie yesterday, Charlotte's Web, on a day that I knew wouldn't be busy. We had no one sitting two rows in front of us or behind us and no one to the left and at least 12 seats before anyone to our right. So I'm hoping he didn't have a chance to catch any illness from anyone and he enjoyed the movie.

Tuesday is my first OB appointment for this pregnancy (I'll be 8 weeks 4 days). My OB always does a quick ultrasound to 'verify' a single pregnancy in the uterus. I'm going to bring Asher so if I see the baby and heart beating I can show him on the monitor (my OB doesn't print photos in her office). Since I have had several pregnancies before, my belly is growing rapidly. Asher has noticed and said, "Your belly is getting bigger and bigger." I just hope we have a healthy pregnancy and he can celebrate with me on Tuesday.

Wednesday I take Asher to the plastic surgeon. The wound isn't all healed yet, so we'll see what the doctor says then.

Friday they are "fitting us in" for an MRI. After breakfast Asher can't eat all day (that should be fun) and we have to check-in around 3pm. It is a full brain and spine scan. We did just have one on 11/30, but we need one done before chemo restarts for a base line.

We don't have an appointment for the PICC/Broviac Line surgery yet or for a hearing test yet.

I'm still hoping to talk to Dr. Finlay this week.

Thanks for all the well wishes you have sent for us for our New Year. We still don't have a set schedule and hopefully once we can get one figured out for who sleeps where, who takes care of who, Scott and I will feel better about things and go day to day or week to week. If we do start with Round 4 of Head Start III, it isn't as tough a round as 1, 3, or 5, so that should give us a less stressful start to this treatment phase.

One more week and maybe Asher won't need a dressing on his head. It looked really good today and the plastic surgeon suspects 7 more days and it will have closed up on its own. I'll take Asher in next Wednesday again to have her take a look. I'll get a photo up here soon.

She talked to me about the graft not taking (since I wasn't there last week since I was sick)....saying how rare it is to see NO part of a graft take....none of it took to Asher's wound, she said....she said it was telling us to let it close on its own. I think there is probably a real good reason it happened that way. Even if it cost us 1-2 more weeks before chemo, I think it will be good to not have a graft site to worry about as far as a weak point in future chemo or other treatment(s).

I have seriously been questioning the decision to start with chemo round 4 of the Head Start III protocol, meaning two rounds and then transplant. I'm not sure how I even have the right to question the man who developed Head Start (Finlay) or Asher's oncologist. I have no experience in this area. Chalk it up to something in my head, or gut, asking me to question this. I was always told that the success of chemo is how close the rounds are to each other, not necessarily the number of rounds. Asher hasn't had any chemo since near the end of September 2006. That's a full season as originally told to me after this infection happened....three months, three long months. I have hated the break as far as Asher's treatment has been concerned. It has worried me. I guess Finlay said as long as the residual tumor had responded (which it had, it went from 5mm to gone), Asher could continue with the treatment where he left off, that three months wasn't too long. Still....I don't know....like I said, I'm questioning it. I may even email Finlay myself.

Clinic Visits and head dressing changes (VAC Therapy System) in PACU or OR - Monday, Wednesday, and Friday after discharge from hospital on 10/28/06.

10/30/06 10:20am PACU




11/1/06 9am PACU and 11:30am CLINIC
Wound Photo

Gameboy in admitting before getting checked by nurse in PACU


In Clinic, Asher wanted to leave, so he took the umbrella stroller and started walking out of the room and down the hall....he yelled and cried when I picked him up to go back into the room....


Asher fell asleep on me in clinic after several people came to talk to me and check him, after he threw up, and while we were waiting for his blood counts:


11/3/06 10:30am OR
pre-op after getting Versed drug through his NG tube


11/6/06
playing a video game

listening to music

helping to put in the medicine in his PICC Line to put him to sleep

click to see head wound & hair growth

11/8/06 PACU
5th floor of parking garage with a helicopter parked at the top

before waking up in 'recovery area' in PACU


11/10/06 OR
2nd floor parking garage waiting for elevator

Waiting in admitting...

Right before going into the OR after getting IV Versed in his PICC Line (holding the stickers up that the anesthesiologist gave him)


11/13/06 PACU
In admitting:

Before procedure:

Sleeping in recovery after morphine:

Upset in the SUV on the way home - he pulled out his NG tube too and was mad then that the tape was still on....


11/15/06 PACU

(no photos from this day - forgot my camera)

11/17/06 OR
Waiting to go into the OR (they were an hour late)


11/18/06 - HOME DRESSING CHANGE #1

Day 43 Post Wound Surgery #1

Scott snapped some photos this morning when I did Asher's dressing change. The bone is definitely still visible. Asher sat pretty still for me. He said, "Ow, ow, ow, ow." I did it pretty fast and then he was back to his games and he's in a good mood this morning.

Wound Photo 1
Wound Photo 1 - closeup
Wound Photo 2

11/19/06 - HOME DRESSING CHANGE #4



Wound 11/19/06 PM

11/20/06 - Plastic Surgeon Clinic Appointment



11/20/06 - HOME DRESSING CHANGE #5 - Day 45 Post Wound Surgery #1

Wound 11/20/06 PM

12-2-06 = Day 57 Post Wound Surgery #1

Wound 12/2/06

12-5-06 - Day 60 Post Wound Surgery #1

Wound 12/5/06 AM

12-7-06 - Day 62 - Skin Graft

12-13-06 - going into OR



Skin Graft didn't take....it was removed....
Head Wound 6:30pm
& a Closeup

1/1/07 - day before admit for Chemo Round 4
Click to see the back of Asher's head from this morning.

Day 6 Post Skin Graft & Day 68 Post Wound Surgery #1

The skin graft didn't take.....no real reason why, says the plastic surgeon. {Well, it was also said that it could be one of three reasons (1) leak in yellow bolster dressing - but there wasn't, (2) excess fluid behind the skin - but there wasn't, or (3) just rejection / bacteria present.} She said it is smaller though and will heal on its own now in the next 10-14 days. Or, I mean, it is supposed to heal in that time....maybe I could ask you all to pray for healing....please.

So, she took the skin from the graft off his head and part had grown out past the scalp, so she cut it off and used silver nitrate on that area. Then he has a dressing with bacitracin and telfa/gauze that I will have to change one time a day. He still has his 'hat' on to keep the dressing in place.

Head Wound 6:30pm Today & a Closeup

Anyway, all of his butt wound is healed except a small part. We're supposed to let him go diaper-less for about an hour to let it dry up. Not sure how long it will take for the scab to make it heal and then the scab to fall off. A week or two, maybe? Also....took his diaper off and it pulled off some of the scab and it bled a lot.

He will go back to the plastic surgeon's clinic on Wednesday for a checkup.

The plastic surgeon is calling the oncologist and letting him know probably can't restart chemo now till first week of January 2007 instead of last week of December 2006.

Scott and Asher left already for his 10:30am dressing change this morning. We agreed to go to the plastic surgeon's main hospital outpatient clinic for the dressing change today since she was having office hours there and wouldn't be able to drive to PCH in time. Asher will be put out....needs anesthetic because the plastic surgeon said he has to be very still while she removes the sutures on his head and she's sure he wouldn't be if he wasn't put out. I didn't go with Asher because I am sick with some nasty cold/flu/something. I thought I was getting better but yesterday I got worse. I'm having trouble breathing and this cough is nagging. Alexa was only sick a couple of days last week and Scott and the other two kids are fine. The kids all got the flu shot on 12/1, so maybe that's why they are being spared this cold. At least I hope they are and I wasn't the first or second to get it. I'd like to see Asher skip this cold right now. He doesn't need that. Maybe Scott will post when he gets home to let us all know how it went today. It feels weird to not be the one going with him this time.

Also, Scott and I are meeting with Asher's oncologist next Tuesday to discuss restarting chemotherapy....it is going to be soon....12/28 maybe?

Alexa (2 1/2) drew this on her mini Doodle Pro while she was at Grandma Val's. When asked what/who is it, she answers, "It's Asher!"

Day 62 Post Wound Surgery #1

Got home an hour ago. Asher had his skin graft today. His surgery was just over 1 1/2 hours. He continued sleeping off the anesthetic (under demirol, morphine, versed, and clonodine) for another 1 1/2 hours....he still didn't wake up well....thankfully I had Scott meet us at the hospital around 11am so he could help with getting Asher out of the hospital and into his car seat. Also, I was thankful to see how warm it was outside today because Asher wouldn't let me put his shirt on and he fought me putting his pants on, so he rode home with no shirt on cuz I gave up and didn't want to hurt his head. Also, it is hard to know where to hold him, grab him, as the graft donor site is his left buttock.

He will be on an oral antibiotic for 7 days (every 12 hours) and continue on methadone (2.5ml every 12 hours) and will also get oxycodone for pain. He's eating a cheeseburger, slowly, right now....with short intervals of sleep. Asher is in pain....I found him in one of the playrooms (carpeted) on all 4's banging his forehead against the floor. When I picked him up, he said, "I want an owie on my head. Right there. I WANT TO HURT MY HEAD!" This was about 10 minutes after the oxycodone dose (2.5ml). He cried himself to sleep on me but only slept 20 minutes and is now working on the cheeseburger again.

Aubree was very good at the hospital. Everyone called her a "mini-Asher" because she looks a lot like him. Alexa had a slumber party at Grandma Val's last night and will probably have one more overnight tonight.

Thanks for the well wishes. Gotta get back to the kids.

I'm about to go wake Asher up, change his head dressing, and then off to battle traffic. His surgery is at 10am, hopefully! I'm bringing baby-A with us. Scott is going to try to be there when Asher wakes up so he can carry him to the car and get him in the car seat; I just physically can't handle Asher when he wakes up from anesthesia anymore and with his graft, his butt will be owie....send good thoughts. Thanks!

It really is amazing, how good the wound looks tonight. It probably would have been okay to graft Friday, but I'll accept Monday as the best day. It is scheduled for 2pm at PCH OR. Not a real good time; for 6 hours I'll have to tell Asher he can't eat. He's going to cry. Anyway....here's the wound photos from tonight.

Wound 11/29/06
Wound 11/29/06
Wound 11/29/06 - closeup

There was a cancellation in radiology, so Asher's MRI (head and spine) is tomorrow at 10am. Sounds like we may hear the results Friday.

The plastic surgeon said Asher's head is healing nicely. Not ready to graft yet and she is thinking Monday is a better day than Friday. There isn't as much tissue over the bone as she would like, yet. So, someone will call us before Monday with Monday's OR time. The surgery will be an hour long. She will have a large yellow dressing/bolster? sutured to his scalp, just like he had when the Integra was put on back in early October. She will then have to take him back to OR 5-7 days after the graft to remove the sutures/bolster since he shouldn't move when it is removed and she is too afraid to try it without putting him out (good idea). She said Asher's graft sight (butt) will heal in 5 days and she will show me how to take care of it. Asher will need pain meds, but he is already on them. She said usually patients take Tylenol with codine but we have oxycodone to take the edge off, so we'll probably just use that as well as the methadone every 12 hours. She said 2-3 weeks, closer to 3 weeks, before Asher can have chemo after the graft.

When we got to the other hospital, at the oncology clinic, the waiting room was packed. Not one chair open to sit. The last roommate Asher had when he was inpatient was there. It was nice to see familiar/friendly faces when we got there. It made me think about finding a "moms of cancer kids" support group in Phoenix....again....have thought about it in the past but have never made it a priority (yet). I'd like to just get together with other moms, just to talk, share, give support, a friendly face and smile, and maybe even a hug....

Asher had a good checkup at the oncology clinic. Asher has lost quite a bit of weight. He's down to 13.6kg (30.1lb). So, he has lost 5lbs in one month. Yikes. The nutritionist backs me up with not putting the NG tube back in, for now. I told her he just started eating a "full meal" two days ago. She saw him eat a banana while he was there. She told me to be careful how much milk (whole milk) he drinks, as it could fill him up too much and he won't eat foods as much. She asked that I bring Asher in for a weight check (on their scale) before surgery on Monday.

Asher and I went through the McDonald's drivethru for lunch and he ate a cheeseburger. About 15% of the bun and 95% of the meat. He also had 6 french fries. It is the first McDonald's cheeseburger he has eaten in months. To see my little boy eat....there are no words to describe the feeling of seeing him eat. It has been one of the most challenging parts of Asher's illness/treatment for me, personally.

I'll be able to take the girls (and Asher) to the pediatrician's Friday at 3pm, instead of rescheduling, for Aubree's 6 month checkup and Alexa's owie checkup. On Saturday Alexa fell and hit her head on Asher's bed (that's what she said, we didn't see it even though Scott was only 10 feet behind her), so she had to go to the ER and get durabond on her forehead (no stitches). The ER doc says the pediatrician should check it too. I think the pediatrician will enjoy seeing Asher.

Lots of driving around this week. We stay busy.

Asher will go to the plastic surgeon's clinic Wednesday at 10am (at a different hospital) and then following that I'll take him to the oncologist's clinic at PCH so the oncologist and nutritionist and social worker can all come talk to us. Not confirmed, but Asher might go into the OR Friday (to close his head wound or skin graft) and they are trying to get Asher into radiology for a MRI for Friday too, hoping he can just have one day with anesthetic. Now that Asher is eating again, it is difficult to tell him he can't eat or have milk before surgery or MRIs.

Day 51 post wound surgery #1

I am due to give an update, but I am really tired lately and not sleeping too well and the kids are keeping me hopping.

I realized this morning that today is the sixth month anniversary of finding out Asher has cancer. Six months. I wish we were closer to the end of his treatment than we are. I know I'm going to get all emotional again when he has to go back to the hospital. He has been home a whole month now!

I removed Asher's NG tube last Wednesday. His skin had eroded at his left nostril where the NG tube was. He has a hole there and it is trying to heal, but with as much as his nose runs and as much as we need him to blow and wipe his nose, it is not healing too well. I wish he could get over this cold and cough that is sticking with him.

Also, Asher started complaining his back hurt last week. I'm a bit worried about it. The oncologist on-call told us to increase his methadone and see what happens. Honestly, I didn't like that answer and will be touching base with Asher's oncologist this week. Simple backache or cancer spread....?

Asher's head wound started healing really well this past week. I would say more than 50% of it is now healed up to the level of his scalp (or past....almost too much filled in at the bottom of the wound). I think the bone is completely covered now, but I haven't poked or prodded the tissue obviously. We go to the plastic surgeon's office this Wednesday hoping to schedule an OR time for Friday to close it up (maybe without a skin graft).

Wound 11/22/06
Wound 11/25/06
Wound 11/25/06 - closeup
Wound 11/25/06 - side

Asher is drinking lots of milk every day. About 30 oz a day. He is eating more too. He even ate several bites of turkey and roll at our Thanksgiving Feast (brought to us by 8 women in my AZ moms group). Thanks again ladies!!!

Asher is going to the bathroom on the toilet and holding it in between; he doesn't ask to go though so we have to remember to take him. He is wearing pullups instead of diapers right now. He finally doesn't cry anymore when we put him on the toilet. He is brushing his own teeth now. The brushing hurts his gums a little but it is getting better.

Asher seems much more tired lately. He is taking a long nap at least one time a day. Although, he isn't taking a nap, only a "little rest" (Asher's words).

He has this fascination with "two" right now. Two seconds, two games, two bananas, etc. Recently, at night he holds up his two fingers and says, "Two, mom and dad, lay in my bed with me." Who can say no to that little face? (Good thing he has a double bed.)