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.

before we knew Asher had cancer

5-1-06 - being silly with the baby clothes while helping me sort baby clothes for Aubree is due to be born this month

5-6-06 - swimming in our pool at home

5-13-06 - playing Mr. Potato Head

5-14-06 - painting a card for Mother's Day

Mother's Day - outside on the new benches in the front yard

5-18-06 - Dancing with Alexa (after the two of them were dancing with mom (pregnant with Aubree))

5-21-06 - at Grandma Val's (mom is at the hospital with day old Aubree)

5-22-06 - first thing this morning, Asher wanted to hold 2 day old baby Aubree - such a proud big brother

I guess her cries were a bit too loud.

5-24-06 - loves taking photos with a digital camera and being silly on the couch with his sister, Alexa

Sick to his stomach and vomitting...

Although Asher likes to fly kites in the wind, he isn't too fond of the wind, and it was a bit chilly out this morning. The wind finally let up this afternoon. Asher went to pick out some flowers with me at Lowe's and we came home and planted them in the front yard this afternoon. Just wanted a bright spot in the yard. Just wanted something special to do with my little boy. Just wanted some time in the sun, outside, because he deserved that today. To be free. Free of the hospital, IV pole, and transplant room.





I talked to Asher tonight about his chemo. His LAST round of chemo. I told him it will be TOUGH. That he might not want to eat and that's okay and they will give him TPN in his catheter. I told him he'll be sick and he'll be tired and he might hurt. I told him after a week of that they will give him his stem cells to make him big and strong. I told him that Daddy will be there during most of the chemo and then I'll be there during the stem cells. I told him his room is a private room for just him. To make him all better. I told him he won't be allowed out of his room so he should pick out toys and things he wants to do to make it fun, that Daddy and I will make it fun in his room. I told him it will be a long time in the hospital this time, that he'll miss Alexa and that he'll miss Aubree, that they can't come. I told him to play lots tonight and tomorrow we'll pack and then we have to go to the hospital. I asked him if he had any questions.

Asher didn't. He was OK with everything. The only part he actually talked about was about the eating....he said he didn't want a tube. I repeated, "If you don't want to eat they will give you food in your catheter, from a bag on your pole." I told him if he felt like eating he could eat too. That he might get special food.

He had a bath tonight and I clipped all his nails (no clipping for the next several weeks/months (because if we accidentally get his skin it is a site for infection to start and if his nails are sharp he could scratch himself and cause site for infection there too), only filing). We flushed his lines and then he played crazy upstairs, with his two sisters, before bed.





So....it's okay....and tomorrow starts the end. The end of treatment!

Tomorrow is the day I tell Asher he has to pack to go to the hospital Sunday. I have used the word "transplant" to him but of course I know he has no idea what that means. He does understand what going to the hospital means and he hasn't been too thrilled the last two times he went. I started telling him a week or so ago that this is the LAST treatment and he just says he doesn't want it. Who could blame him.

Asher didn't want to go to my ultrasound this morning; he wanted to visit Grandma Val since he hadn't seen in her weeks. So I dropped him and the girls while I went to my ultrasound. After only being there two hours, I got back to pick him up and he was not happy. He looked at me kinda mad and said, "I don't want to go home." But he came home in a good mood. When we got home I told him he is having a baby brother, that our baby is a boy. I showed him the pictures. I told him he has two sisters and now also one brother. He was actually pretty happy and repeated what I said, holding up his fingers, 2 for 2 sisters and 1 for one baby brother. Then he hugged me (my belly I mean). I'm thrilled for him. I thought it would be awesome for him to experience having a brother.

He is napping right now. I just gave him his third and last dose of Palifermin. Several people have said it is a MIRACLE drug, including the home nurse that came yesterday. I'm glad there is such a thing, less GI sores means a lot for his healing.

I think Asher might go visit with his Grandma Val for several hours tomorrow while Scott and I get a little time to ourselves. Hate the thought of catching any illness at a movie or something, so we'll see what we want to do. It was our 7th anniversary (on 2/29, which we got to skip this year LOL as busy as we are its a good thing we only "celebrate" every 4 years LOL). Then when Asher comes home we'll have him pack I think. Then just normal Saturday stuff. Then Sunday, late morning, I think we'll go to the zoo. Have to think about it. The weather will be the warmest that day for morning zoo trip. We live way on the west side, so not close to the Phoenix Zoo, but there is a smaller zoo on our side of town that we can go to. So, have to see.

Closer we get to starting the transplant, the less I sleep at night. I don't like to dream, so I think I don't like to sleep.

Day 20 Chemo Round 5

I was really happy with the decision Asher made to stop playing outside when he got tired and go in and take a rest. He napped on the couch for 2 hours I think. Good boy, Asher! You need your rest too!

Day 18 Chemo Round 5

Asher wanted to make French Toast this morning, so he helped get the ingredients out and he always sprinkles the cinnamon. For lunch he had a turkey and cheese sandwhich. He's doing some of the old things he loved to do at home....one of which is make a huge mess of his toys, and the other, take all the pillows off the couch to make a fort. I know he's feeling better now.

Aubree has been throwing up since 7 am this morning. She has thrown up 4 times (as of 2pm). She can't keep anything down. Now I am beginning to think Asher and Scott did get a bug at the hospital and brought it home because Scott didn't feel well this weekend, same as Asher. So, I guess I'm just waiting for Alexa to get sick now. Not sure how to juggle everybody being sick and get Asher to his appointments. I'm actually coughing and blowing my nose more now than I was 5 days ago. Will have to figure it out I suppose.

Day 17 Chemo Round 5

It was a pretty good day. Asher was a bit moody, but not too terribly moody. He laughed more today and smiled more today, so that was nice to see. He ate more too....including, macoroni and cheese with hotdogs for breakfast at 8:30am (yes, he gets whatever he asks for as far as food no matter what hour or what meal it is), cheese, ham, french fries, and apple for lunch (that's a meal by Scott), ravioli for dinner and a few snacks in between, including a blue sucker and Ritz crackers. We're thankful for no vomitting and no diahrea today (and that was without zofran). He didn't complain of any pain either (and that was without oxycodone). His nose is still running. It was quite chilly today (compared to Saturday) and it was a financial holiday so Scott was off of work. So, I got outside this morning and got some of the yard work done in the front yard (I wore a hooded sweatshirt the whole time I was out there which tells you how chilly it was). Asher was a bit disappointed he couldn't go outside to play today because it rained all afternoon and night.

I knew this would take a couple of days; Asher has finally crashed and taken a nap! He fell asleep at 5pm, the moment we left the driveway to go for a car ride, and slept till 7:30pm, on Scott's couch in his den. He fought going to bed last night again and was up, I think, past midnight. It was only a matter of time before his body told him he HAD to sleep! Course, now he is still up but I can tell he's ready to go to bed for the night (10:40pm).

Day 16 Chemo Round 5

Well, it was a rough night. Asher wouldn't go to bed till after midnight. Then, he wouldn't go to bed in his own bed, again, who could blame him. So, he slept with his Daddy. At 3am I woke to hear Asher vomitting, all over the masterbed. You'd think by now Scott and I would prepare and have a bowl nearby, ah well....

Then Asher got up with the girls (way too early for him since he didn't sleep much) at 7am. He was so crabby, soooo crabby. And, when he is like this he screams and hollars at Alexa, argues, doesn't play nice....he's just plain angry. I couldn't figure out what to do so we kinda ignored it and tried to split the kids up a bit between Scott and me today. He ate a little breakfast, but mostly wanted to drink water and milk. Asher had diahrea 2 times in the morning, then threw up in early afternoon, then felt like eating pretty much immediately after. It was like he felt so much better after vomitting. Then Scott gave him Zofran (oral, not IV) and Asher had really really bad diahrea one more time and then wa-la, complete change in his mood. Even with no nap, he was suddenly happy and playing nice with Lexa and everything. He was even able to go outside around 4:30pm and play till 6pm in the yard. Riding his trike and swinging and sliding on the playground set. He then had spaghetti for dinner and played with the girls with the water while they had their bath. Then it was reading books in bed and that was all good. He even read part of one story to us (not "read" but told the story). He's mad about going to bed right now but hopefully he'll fall asleep. He got some Zofran before bed, too, so we're hoping he gets a good night sleep tonight. Oh, and his nose is still running and running. We might have to start giving him something for it. He got the same runny nose in Round 1 and Round 3 and we're not sure why he gets it but it doesn't seem like a "cold." It runs clear, but often, and only when he's sitting up, standing up, or running around, not while he is laying down.

And, to answer Krista's question, technically Round 5 goes for a full 28 days (today is day 16), but he only got chemo till February 5th (Day 3). He isn't getting neupogen shots anymore, so likely his counts will drop again and then go back up on their own as his bone marrow recovers. He could still get a fever, so we will watch him closely for that. We will most likely start to go for appointments to check his counts and begin the tests that need to be done prior to going to transplant. We call it transplant as it is treated much like a bone marrow transplant, but he is receiving his own stem cells that were collected back in August 2006. So, an "Autologous Stem Cell Transplant" is the technical term, but we will call it transplant as that is how the hospital treats it. He will have a brain and spine MRI and as long as the scans are clear (NO TUMOR VISIBLE) he will go to transplant, but we're not sure of the date yet. We are thinking early March.

I like to just hold Asher and tell him I love him and he ALWAYS tells me he is OKAY even though I know he isn't at that given moment.

He got up twice already so far tonight after going to bed at 8:30pm (with no nap) having diahrea in his diaper and crying in pain (pointing to his leg - fault of the neupogen I am sure) and wanting milk and water....also gave him some oxycodone. He doesn't seem to adjust to coming home as well as we could hope, but who could blame him. It is so much quieter here than the hospital and he'd be all alone in his bed if he didn't come snuggle with mom or dad.

I hadn't seen Asher in two weeks. He is SO bald. I kept looking at him because his little white perfect bald head was just so cute. But my eyes kept going to his eyes, and, they are tired, puffy, somewhat red, and almost all of his eyelashes are gone on the top eyelid. I have to admit I felt bad; it is hard to see my big boy like this. I wanted to cuddle with him in the big bed and let him sleep, but he wanted to play, and therefore argue with Alexa. The last two weeks were so peaceful and now he's home, and it is good to have him home, but Scott and I feel like we're constantly breaking up fights. They will play nice for about 10 minutes and then a fight breaks out. Asher slaps his sister too, even in the face. Then she screams and cries. Scott says, "How are we going to do it with four?" I have the same question and I ask it to myself almost every day. I have five more months to ask myself this; maybe I'll come up with an answer sooner than later. I know some of this is normal sibling stuff, but sometimes I worry there's more to it. Maybe some jealousy. Maybe some anger. Maybe frustration and sadness and love. Maybe even pain. I want to treat Asher "normal," but the fact is, he just got done with more chemo and no matter what I want to tell myself, he has some affects from it. I'm cautious not to always treat Asher 'better' than Lexa. I try to be fair. I don't know. I wish I had all the answers, but I don't. Anyway....

Something else....something interesting that Alexa said today...."We rescued Asher from the hospital." She said it three times. I'm not sure where she came up with that.

For dinner Asher ate 3/4 of a cheesey hotdog and about 1 cup of macaroni and cheese, milk, and water.

At bedtime Asher said he wanted mommy. That was nice to hear, especially since Alexa always chooses daddy and I have missed Asher a lot. We're all tired. We'll all go to bed early.

Just got home with Asher. As we passed the school, 1/2 a mile from our house, there were about 50 kites in the air. Asher wants to find his kite now so we'll probably head outside soon. It is super windy and 83 degrees today. The oncologist said it was okay for Asher to play outside in ANY weather for the next 2 weeks. Yeah!

He got his last neupogen shot for round 5 at the hospital before he came home. So, he doesn't have to have anything at home. Daddy said his nose started running at the hospital the morning after he was running around in the halls at the hospital (so yesterday morning) and now it is really bad. He sounds a bit stuffed up, too.

I didn't think it was possible for a 8 month old baby to miss a sibling, but boy was Aubree HAPPY HAPPY to see Asher. She just kept looking at him once we got in the house and giggling and smiling at him.

Asher just laid down on the couch, maybe he'll rest a bit before playing with Lexa.

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

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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)

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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

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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

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We celebrated Asher's birthday today. His 4th birthday is Wednesday, but we're told that Monday's and Tuesday's chemo will make him not want to eat and his counts will go to zero mid-week , so we just wanted to be sure he felt good enough to celebrate.





He's been more tired than normal and needs a good long nap in the afternoon. His legs and feet hurt more, again; I can tell by the way he is walking. He is eating really well and maintaining weight. He has been playing really well with the girls and it has been such a blessing to have him home, for him and for me!!!

We have a day/night off of chemo as the last oral dose for this round was last night and the oncologist didn't write orders for Sunday, as the protocol called for, before he went out of town on vacation. So, we'll be taking Asher to clinic and figuring out a plan for the next few days/week at 10am. I like to plan ahead. I like to know what to expect, at least a little. So, I have had lots of anxiety the last few days regarding this coming week, not knowing what is happening for sure. I'm going to push to bring Asher home after clinic chemo on Monday and Tuesday.

Tonight I'm going to change Asher's dressing on his broviac, flush the lines, put new caps on, give him a shorter buzz haircut, give him a bath (probably press-n-seal over his catheter), and have a good night sleep in case the rest of the week is a challenge.

Please pray Asher doesn't get sick, doesn't get a fever over 100, and doesn't develop any infections as the week progresses. Thanks soooo much!!

Day 8 Chemo Round 4

I have no complaints about doing the chemo at home. So far so good. The coordinator has been discussing doing the Cyclophosphamide (CPM) outpatient. I'm pretty sure I am all for it. Looking back at the blog for Round 2, Asher only had ONE day of fever, and it was early in the round and it was only 38.1 and nothing came of it. Asher is due for CPM Sunday, but they aren't going to do it (outpatient or inpatient) until Monday. I guess it would be about 18 hours late. Asher will only have CPM for TWO days (Monday and Tuesday) and there is no Vincristine (VCR) this round so he would be done after Tuesday. He would need fluids and some extra care from home health for a couple of days then....he requires Mesna. Neupogen shots begin Wednesday and I have been trained on how to give the shot, but have not done it yet. He would need blood draws for counts, not sure if this is every day or every other day. Asher threw up quite often in round 2 after receiving the CPM and in the morning. If I can control it with Zofran, hopefully it would not be an issue having him home and feeling too ill. For some reason, they never (or hardly ever) gave Zofran prior to the chemo. If it is okay for me to give him some prior to the CPM, maybe he wouldn't throw up at all.

Anyway, so we probably won't even know if he will be admitted till we go to the hospital Monday at 10am because his oncologist is on vacation till then and the coordinator will not call him (if he calls in though, she will ask him about doing it outpatient).

The home nurse (a new one since we have new insurance this year) is coming in the next couple of hours to check on Asher and to see if I did the dressing change over his BROVIAC okay. She wasn't too happy that we didn't want her here to do a dressing change (well, I had already done it yesterday morning and didn't talk to her till afternoon), but I have been doing them for months, so I didn't really think much of it. Plus, I have been trained on everything at the hospital, and paperwork is in his file there, so she won't have to do that paperwork. Oh well, I should play nice, since I'll need the home nurse to come do his fluids/Mesna and help coordinate with that if we end up doing the CPM outpatient.

UPDATE 5:30pm:
Met with Dee, Asher's home nurse. She came at nap time so I kept Asher up till she got here and she was polite enough to just take a quick look at him, have me take his temperature for her and then get my signature three times and let us nap (Asher, not me, Aubree decided she didn't need an afternoon nap, ha). She said if we do the CPM at the outpatient clinic, she would come there to hook up Asher for his trip home then....thanks for reminding me Kathleen, I need to ask for IV Zofran because I know they can get it for me instead of this oral one we have. I'm not sure what the home nurse would come hook up for home...maybe just fluids? Lasix?

Hmmm...here is what 8/21 was like:

12:30-4:30pm - IV Fluids in preparation for chemo
4:30-6:30pm - Mesna
6:30-7:30pm - cyclophosphamide chemotherapy
7:30pm Asher all of a sudden had an extreme case of vomiting

So convert that for Monday 1/15:

10am-2pm: IV fluids
2pm-4pm: Mesna
3pm: Zofran by IV hopefully????
4-5pm: CPM

Clinic closes at 5pm I think....so they kick us out at 5pm then....hmmmm....sure hope he doesn't vomit in the car during the one hour trip home. Guess we'll have to see how it goes.

(A side note: we will definitely be doing round 5 and the last one with the transplant inpatient. Round 5 is like round 1 and 3 and Asher got fevers and very sick those two rounds, so we'll definitely not take a chance being home. This is one reason, since this round isn't hard, I'm trying to get more time at home with the girls. It is RSV season and they aren't allowed to visit in the hospital (and we were told that could go till April).)

Day 4 Chemo Round 4

Last night after 2mL of oxycodone, Asher slept fine!

Really no problems to mention today. Asher had a great day of eating, drinking, playing, and even took a 2 hour nap (which means he is still up at 10pm). He did AWESOME with his chemo. As far as I know, he hadn't eaten for over 3 hours when I gave him his Zofran. 30 minutes after the zofran I gave him his 2 chemos. The powder one (temador) mixed with 3mL of orange juice, took that one first. Then I had already put the 2.8mL diluted liquid one (etoposide) in about 2oz of OJ (before he came in the room) and just told him he needed to drink it after he took the powder one by syringe. He drank it little sips at a time and he was done, no problems. One of the chemos can't be mixed with dairy or grapefruit juice, so I'm careful allowing him to eat or drink anything dairy for at least an hour after. He only has one more dose (tomorrow night) of the powder one, so that should make all the other nights a bit easier.

I'm exhausted. I'm not sure why, especially today, it all caught up with me. I had to sleep a lot today and now I'm headed to bed. Scott can finish the last load of laundry that's in the dryer right now and then put Asher to bed when he gets too tired. Tuesday we have a ton of contractors coming to the house to do (HOPEFULLY) warranty repairs, so I'll be taking the kids to my mom's house so Asher isn't exposed to lots of people.

Also, if you can, please send snow to Dakota. After Asher was diagnosed, Dakota's site was one of the very early ones I visited. I'm sad to see this horrible cancer (medulloblastoma) taking Dakota from this life. I pray for minimal suffering as he passes. Saturday I mailed the eight snowflakes that Asher and I made together at the hospital last week. I feel like it isn't enough, but we're thinking of you Dakota, and your family!

Asher whined in bed from 11pm-3am last night.

Tonight he already started whining before 10pm. Finally he told Scott his legs and arms hurt. We know aches are side effects of the chemo, and since he played all day really great with Alexa with no complaints and only complains during the night and he can't get comfortable, we are sure he is in pain.

Scott called the on-call oncologist and it is okay to give Asher oxycodone for pain.

Day 3 Chemo Round 4

Tonight we did chemo right before bed, around 8pm. Scott mixed everything. I sat with Asher and encouraged him, like I did at the hospital. We gave Asher Etoposide first and he immediately threw it up. The home version is pre-diluted with 1.4mL (saline I think they told me), so it is 2.8mL total. At the hospital we were doing 1.4mL of etoposide and 1.6mL of orange juice mixed. I don't like to give more than 3.0mL of something to Asher at one time because that's about all he can really handle orally, but I did add 2mL of orange juice to it to offset the taste (instructions say to use 3oz of OJ). So we waited, then gave the Temador, and he did okay with it. Then waited a bit again and then I retried the 2.8mL diluted etoposide, this time mixed with 2tsp of OJ and he got it to stay down okay. Poor kid. He was holding his tummy. In the hospital they were giving IV Zofran 60 minutes prior to the chemo so we did the 60 minutes too, but since it is oral, I think we had better try only 30 minutes tomorrow.

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.

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:

Sara Carling, a digital designer, asked me if she could adopt Asher and his sisters for Christmas last month. She created a kit and named it "Share in the Season" and sent us all the proceeds from the sales. We received $387.61. Scott and I want to thank Sara and the digital community for reaching out to us! You have sure brightened our holiday this year! THANK YOU from the depth of our hearts!

Here are photos of the gifts Asher, Alexa, and Aubree received:







Whether or not you were able to buy the kit, if you visited this blog and sent comments, thoughts, and prayers to us, we are most thankful to you, too! Just getting awareness out there, about brain tumors, cancer, Asher, and the painful days our family has had to endure....that means so much to us that the word has spread and the prayers pour in. Please continue to pray, for minimal suffering, for complete healing, and for God's presence in our daily lives. Thank you so much!!

Wishing you the joy of Jesus this Christmas, and always...

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.

12-2-06
Holding Aubree


Found the Santa Hat



12-3-06 - Decorating the Christmas Tree



12-5-06 - Asher said, "I have horns!"

In the past few years I haven't really enjoyed decorating the Christmas tree. And, in fact, to be honest, I didn't want to do it this year. But, I dove into the ornament boxes this afternoon after the kids naps. Thanks to my mom, we have some great ornaments, as she passed them on to me. They are paper mache. They have years on them and are still wonderful, although some hanging strings have broke or come out and some pieces have broke apart and need glue. I told Asher, as he took the first one, to be very careful so it didn't break. I showed him how to open the little string on it and hang it on a branch. I told him to show Alexa how to do it, as he took his second one out of the box. So, when Alexa got her first one to put on the tree, Asher stopped her and said, "Stop. Be very careful. It is fragile. Do it like this." We also have many little Hallmark ornaments that Scott and I got the first few years we were married. We put several of those on as well, at the top, lifting the kids so they could reach. Asher really liked the characters: Winnie the Pooh, Curious George, Blues Clues, etc. He also liked the train, mini-car, and ponies, and would play with them along the flap of the box before hanging them on the tree. It was really fun to see the personalities each of the kids possess. Alexa took less than a second to decide where to hang an ornament, sometimes hanging three on the same branch. Asher, he would look, decide, change his mind, even moving to the other side of the tree entirely, then hang it just right. When they were done, Asher and Alexa sat in their beanbags just looking at the tree. It was a treasure, for me, as I didn't expect to have Asher home in December. I needed this. I needed my boy home. I needed my kids together. I needed these simple joys. I'm glad the chemotherapy worked on Asher's residual brain tumor. I'm glad nothing grew back and the cancer took a break for us. I'm glad we have this time together. The tears still flow, but a lot of them are because I feel blessed and even happy. Even though there is pain, the joy still fills me and I can feel it. I guess this is what life is all about....

Wow, it is the last month of 2006. It got here fast! We have been SLOWLY decorating. Our fake tree is up. It has lights but no ornaments yet. Scott has put some lights outside. The last two days and nights got cold (56 for a high yesterday and low 30's at night), but we won't see snow. I've lived in AZ 8 1/2 years now (Scott has lived here 8 years) and I do have to admit, I wish there was some snow here in Phoenix so I could make a snowman and a wall out of snow with the kids. I have memories of making them with my sister growing up in Wisconsin and snow angels....it is fun to make snow angels. It was fun to go sledding. Instead, we are outside flying kites, swinging and sliding on the playground, and playing soccer in the front yard. We even planted a few flowers a couple of weeks ago. We have made our home here, now, but maybe we'll make a way to see snow once a year in the future. If you have snow, maybe you can email Asher and Alexa some photos so they can see what snow is.

Oh, and I wanted to mention, that the owner of Elemental Scraps emailed me and said, "We are going to be doing a kit for Christmas to raise funds to gift the little sweeties in our community who are not healthy during this holiday season. We would like to add Asher to the list of kids who will receive something from the digi ladies." So many generous designers out there! I did respond and mentioned that Sara Carling adopted Asher and his sisters for Christmas. I would like to see other kiddos struggling with illness get some extra love this Christmas, so I declined the offer to have Asher added to the list. However, I wanted to mention this, so you can be on the lookout for Elemental Scraps' Christmas benefit kit and if you can, please help some other kids that are battling an illness this holiday season. God bless!