Day +43

Asher had his weekly clinic visit today. It got pushed to 8 days since last appointment, instead of 7, because the doctor didn't have an open time yesterday.

Weight 17kg (37.5lb)....I'm just not sure I'm understanding all this weight gain. I think I'll ask her when she calls me tomorrow. Scott said the doctor was excited about the weight gain.

Height 40.25 inch
BP 96/49

Counts 2pm:
wbc 3.8 (4-12)
rbc 3.24 (4-5.3)
hemoglobin 10.7 (11.5-14.5)
platelets 239 (140-450)
monocytes 23 (3-15)
ANC 1634

We were told the red blood cells were the last thing to come in after a transplant....so you see they have gone up in the last 8 days! Yeah, Asher! I'm still amazed at how little he needed for transfusions. They had warned us that Asher would need a lot during and after transplant, but it just wasn't that way for him I guess. Last week the doctor even told Asher he could ride a "big boy bike" (instead of just his tricycle) because he is doing so well and his platelets were high enough....but....Asher doesn't have a big boy bike (or doesn't know about the one Scott has put away right now). I would like to see his balance get even better before I put him on a bike....who knows, maybe I will always be a horrible worrier when it comes to him and bikes....

In one week he has his MRI. I expect nothing but clear results. Prior to his MRI he will have a nurse only visit to check his counts.

I'm really excited too because after the MRI, they think Asher can go to clinic appointments every 14 days instead of every 7! Perfect timing because I could then plan my OB appointments one week and Asher's clinic the next week and then repeat. Anything to lessen the driving and such with gas prices at $2.93/gallon.

I noticed Sunday night (Day +40) that Asher's eye lashes had started to grow! And, now today his eyebrows are even very defined and his scalp is "dark," meaning we should feel stuble soon. This is about how long it took for his hair to grown back after his 3rd round of chemo in September; looking back his hair was coming in at the end of October.

And, to add to this entry, tonight is chicken on the grill for dinner. Asher said, "I like chickens, don't cook 'em!"

Day +20

Counts 14:40
wbc 3.9 (4-12)
rbc 3.26 (4-5.3)
hemoglobin 10.4 (11.5-14.5)
platelets 78 (140-450)
monocytes 28 (3-15)
ANC 1638

Tonight, 12 hours of TPN and then discontinue and use IV fluids at night, probably until next Monday but recheck Thursday.

16.3kg weight (36lb)
102cm (40.2" = 3'-4") height

Use Lubriderm on his skin due to extreme dryness and peeling in some areas still.

When Asher was discharged from the hospital, he was given a special post-transplant mask: 3M 1870 Surgical Mask N95. He has to wear them when going into public areas (which is clinic or a store (which we haven't even taken him into one yet) and even outside if it is windy (since we live in the country with neighbors/houses and farms with dirt that flies around). He has to reuse them and they only let Scott take about 8. I looked them up on the Internet and we can get some on Ebay; a box of 20 for $1 a piece plus s/h. Or, even a company selling through Amazon has them for $3 each.

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When I told Asher he had to go to clinic today to make sure mommy was taking good care of him, he said, "What are the doctors going to do?" So, as I opened my eyes wide, got really close to his face and head, I said, "She is going to look here, and here and here," (I was pretending to look into his mouth and ears and eyes). As he giggled, I smiled and said, "OK?" and he answered, "OK."

When we got home, about an hour later, Asher said, "I'm very happy to be home again." And, at the dinner table he told Scott the same thing, "I said I am very happy to be home again."

Everything in between just doesn't matter....it is what happens at home that truly matters.

Asher is 1 5/8" taller now (39 7/8" tall - 50%) than he was six months ago and he is about 1 lb heavier now (33lbs - 25%) than he was six months ago.

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.

For breakfast Asher had 3/4 of a banana and a waffle with butter and syrup. It is soooo good to see him eat!

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.)

Day 35 Post Wound Surgery #1 & Day 22 with VAC Therapy

Scott asked me before I left with Asher how I wanted today to go....you know, I started my day not wishing or hoping for anything. I have really changed, in that I no longer hope for anything in particular for each day. I just go with it....just live. Not sure that makes sense, but I find that I have a lot less things to get disappointed about if I don't assume things should go a certain way. With that said, I realized I was still quite stressed today, and in fact have had a much more difficult time sleeping the last two nights. I guess I'm worried about how Asher will be after the graft. The plastic surgeon has warned me, his buttock will hurt pretty bad, and bother him much more than his head. I'm also worried because he will go home after the graft and he's never gone home right after surgery, the same day, before.

I talked to the plastic surgeon before surgery. First she said Asher's entire oncology team confronted her to find out what was going on. They are so anxious for him to be healed up, as much as Scott and I! When we see his hair growing longer and longer each day, we wonder, "How much has his tumor grown?" Some days we try to forget he has cancer and sometimes for short moments it seems like we can forget because Asher seems fine, but we can't forget. We watch for symptoms, we worry he will fall and hit his head, we worry his tumor is growing or his cancer is spreading, we wonder and worry about his future treatment, we wonder when he will eat again, we want to ask for a MRI, and....it is always going to be like this, but knowing he didn't complete the protocol with six rounds of chemo is hard to live with. So....each day I go to the hospital with Asher is another day I hope and pray he is healed. Seeing the discouragement in the face of the plastic surgeon and the oncology team is difficult because I know I feel much worse inside than they do.

So, they got Asher into the OR a bit early today (12:35 instead of 1:00) because there was a cancellation so that was kinda nice, not having to wait around trying to keep Asher occupied. While waiting, one of the OR nurses came out part way through surgery to say they couldn't do the graft because it isn't ready, so the plastic surgeon was going to do debridement and then the dressing change. A bit later, one of the oncologists and Asher's weekend nurse practioner came by. They both sat down by me and gave me an encouraging word.

The thing I like about being at the hospital is that I run into someone I "know" every time now. So many nurses and other hospital staff know Asher and say, "Hi Asher" and take time to ask him what he is up to. Even when I'm alone, waiting, I can get support. There's so much to say about having a friendly face like that each time we go now. Even the recovery area nurses know us and the head dressing changes do seem to be easier since there are many shortcuts to each visit now since they realize I am there three times a week and don't have to answer the questions over and over each admission.

When she was done, the plastic surgeon came out to explain to me the benefits of waiting for a "complete" healing over the bone before the graft. She said it is slow to heal (remember the opening over the bone was only 2cm by 2cm) because he had chemo and was neuprofenic (spelling? ANC=0 for so long) he is slower to heal. The plastic surgeon said she has to poke and prod the tissue near the bone to make sure it is healed over the bone because it can appear as if it is, but then under a thin layer it can prove not to be 'healed.' I can't explain it real well, so I hope this makes sense. She did say that the scalp seemed looser today than last Friday when she said it was tight and wouldn't stretch/close any further. So, she said the wound may actually get a bit smaller yet before the graft since we have to wait for the tissue over the bone to heal. She doesn't know if she will take Asher into the OR on Wednesday or wait till Friday. It is a lot of work to take him into the OR versus just taking him into PACU so she doesn't want to do it twice that week and wants to really try to guess the best day to shoot for, without waiting too long....so she will talk to the wound specialist that will do the dressing change Monday and then I'll know what day she'll shoot for.

So....more days to wait....like one of the oncologists said to me today, "Hurry up and wait." It's hard not having a plan and it is hard being afraid. There's nothing easy about this stuff, but I'll tell you, it is really nice to see Asher smile and talk to the hospital staff. He is HAPPY to go to the appointments and today he woke up from anesthetic so well, he didn't whine AT ALL in the bed unless I tried to tell him it was time to go. (NOTE: Today's end of surgery cocktail was versed, clonodine, and morphine.) Asher knows Nicky the nurse who has been there for all the dressing changes except 2. Nicky offered another patient juice so Asher asked her for juice and said, "Thank you" to her when she brought it to him (Nicky was impressed with how polite he was). Nicky then offered the other patient (who had her tonsiles out) a popsicle so Asher asked her for a popsicle too.

I'll end with some things Asher said today after waking up from his debridement and dressing change:

"I want juice. Yellow juice."
"I want a popsicle. Red."
"I want to have an owie."
"I want to keep my jammies on." (meaning his hospital gown - it was the first time he wore one for a dressing change)
"I don't want my shirt on."
"I don't want to get out of the bed."
"I want to play games."
"I want to stay with the nurses."
"I don't want to go home."
"I don't want to go in the stroller."
"I want to see the doctor."

And things Asher said all the way home in the SUV:

"I want to go back to the hospital!"
"I don't want to go home!"
"I don't want my appointment over."
"I want to go back to the doctor."
"Turn around mommy!"
"I want to go to the store. I want to go to Target. I want to get pumpkins." (I can't convince him we already had Halloween and if I try to remind him it was a couple of weeks ago, he says, "I want more candy.")
(and all of that repeated over and over till we get home)

NOTE: Asher weighed 15.5kg today with t-shirt, jean shorts, diaper, socks and shoes on....he's losing weight since he doesn't get all his calories with his NG tube feeds with anesthesia 3 times a week.

Saturday, Asher was already wanting to cook and eat. He made pancakes and eggs and ate 3 bites of each. He had been disconnected from his NG tube feedings since 9am that day. The pump that had been delivered Friday didn't work, which I didn't find out till I tried to use it at 5pm. So we called and the home health company delivered a new one around 10pm and right in front of the guy I tried to use it and it didn't work....he said, "It just needs to charge the backup battery a little" so I left it plugged in and at midnight tried to use it and it didn't work. So we called and told the home health company that they didn't have to come out during the night as long as they brought a new, working one around 8am-9am Sunday. So, a few calls later, and me getting a bit upset, we didn't get a working pump until 3pm. By then I had decided to put some formula through Asher's NG tube via a syringe. I gave him 5tsp over 10 minutes, about, and a few minutes later he threw up, and lost the NG tube in the process, and then wanted to sleep. So, after putting in a new tube (and Asher not happy about it) and the pump finally working, Asher got hooked up to his feeds around 6pm Sunday. Since then, he has only had two bites of hot dog and nothing else by mouth except water and red hawaiin punch. He hasn't had all 18 hours of feeds every day because when he goes for his head dressing changes Monday, Wednesday, and Friday, he can't have anything in his stomach for 8 hours prior. Anyway, his weight yesterday at clinic was 16.0kg.

The head dressing changes in PACU are going okay. Asher wakes up a bit irritable, but manageable. Monday he was mad all the way home saying, "I don't want to go home, I don't want __." That is very typical of Asher after anesthetic. No one else realizes it is, but that is his response, confusion and not knowing what he wants. Wednesday we had to go to clinic after the head dressing change and it was a long day. Asher was a bit upset we had to be in clinic, but again, some of it was just the after affects of the anesthetic...."I don't want Dr. Henry (he was convinced his doctor was Dr. Henry and I couldn't tell him it wasn't). I don't want Annie to come in." etc. He was quite thristy and the nutritionist was in the room at the time and got him water and he drank maybe 2tsp of it and then a few minutes later we were scrambling to find something for Asher to throw up in....a nurse practioner from the oncology floor had just poked her head in to visit and emptied a bag she had so Asher could throw up in the bag. Poor guy. After the social worker left the room, Asher fell asleep on me while I waited to get Asher's blood counts (they drew blood through his PICC Line). He was pretty happy when we left, helping me find the car. I saw on the news last night that we missed seeing the snow outside the hospital yesterday. I was bummed. They must have delivered it after we left at 1pm. That might have been fun for Asher.

Scott went to work for 1/2 a day Tuesday and the three kids were really good for me. I was even able to bathe Aubree and give Alexa a haircut. And, when Scott got home around 2pm I got a nap and all three kids fell asleep too!

Halloween was okay. Asher was pretty happy about going trick-or-treating, but after trying on his mask he decided he didn't want to wear the costume, just hold it. So I pushed him in the single kid stroller, with his backpack with NG feeds and his VAC sitting in the basket behind/under him. At first Asher didn't really get trick-or-treating, but then he would say, "Lets get more candy." We went to many houses, but Asher started to get cold (and tired) and so we went home and when I got him inside, he threw up as soon as I set him down. He enjoyed looking through his bag of candy and holding some of it, but didn't try to eat any. He also enjoyed watching Alexa look at all her candy and watching Aubree try to do a wiggle-worm crawl to get Alexa's candy (it was sure cute).

Asher has been walking well. His VAC hangs over the front of his walker in the carrying bag they gave us for it. It is small enough and light enough to hang there and allow him to get off the couch and walk around by himself, which he does. He's playing pretty well with Alexa, inside and outside. They have their normal fights.

I am sick with a horrible cold. Sore throat, headache, tired, and stuffed up really bad the last two days, this morning being the worst so far. I'm hoping Asher doesn't get it, but not sure how it could be avoided this time. In the past when I got sick (two times) Scott would stay with Asher at the hospital and I would stay home and stay away from Asher. Asher does have a little dry cough this morning, which is what my illness started with (and Scott said he had had a cough too although didn't get worse), so I'm just dreading the idea that Asher will be sick now. Alexa had a fever most of yesterday, over 102 before Tylenol. So, I think she is getting sick too. Not sure where we picked this up, but it is what it is and hopefully Asher won't get too ill from this.

Not too much else to update with....I'll slowly add photos to Asher's "Home in Oct." and "Home in Nov." photo journals.

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....

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