The MRI last Friday went well. Traffic was light due to the holiday weekend, and we got there at about 6:45am for a 8am scan. They actually took him in at 7:30am. While we were waiting to get called in, he asked for the cherry mask that he had last time. He talked about the machine going round and round and how he didn't like it. It is the first time he has talked about the scan, before hand, with some anxiety. It is the first time he has told me details. I told the anesthesiologist to use the red mask so he was prepared and Asher wouldn't get disappointed. All went fine and when he woke up he was very confused and upset and angry....like a long time ago, when he got that way....oh I haven't forgotten. Anyway, he yelled at me all the way home. Nothing I did was right. Nothing I said was right. He wanted his daddy, not me. That he said many times over. I couldn't drive home fast enough. Anyway, we were home by 10:15am, just in time for me to turn around and take Andrew to his well-checkup, a 45 minute drive in another direction. Asher had calmed down within a half hour of being home and once he ate, he was fine.

No MRI results. No news is good news, I am sure. I am sure, too, that unless I made a point of trying to get them to call me, like I have in the past, they won't call and I won't have the MRI results till clinic, which is 3 weeks from today. The MRI was so early because it was his day off of school and I planned ahead...crazy mom.

Asher's neck was better by Sunday, but then Scott's hurt and mine, too! Oh, and Grandma Val's too. So, it must have been some cold bug passing around....our head and neck hurts along with being extremely tired....

School is going great for Asher!! I still get my sad moments, when I miss him tremendously during the day, or I get overly worried, but now I really just love that he loves to go to school. He's learning so fast, too. When he comes home, over several hours, he will tell me random things that happened during his day at school. We read more and more and more books now before bed. It feels like so many that it puts me (almost) to sleep!! I've started the bedtime routine at 5:45pm. Isn't that insane?! Well, with 4 little ones to bathe and read to, it does take over an hour. It will be nice when the older two can shower or bathe themselves! Scott gets home around 7pm; so he only sees the kids in the morning now during the week. Asher is usually asleep by 6:30pm or 7pm at the latest now! He's getting about 11 hours of sleep at a minimum. He's also eating almost all of his lunch now, including a full sandwhich, not just a half. So, I think the fact that he wasn't eating a couple of weeks ago was just stress. I'm just smiling at how much older Asher seems to be now that he has been in school for a month. The teacher has told me on a few occasions now, "He is always so polite and well behaved. He is an absolute joy to have in class." He's missed 4 days of school already, and I'm hoping so much that he won't miss any in September. But, we will see! Yesterday he told me a boy threw up in the classroom. That flu is still spreading; hopefully Asher already had that one!

The one thing that I'm struggling with is Asher's behavior at home, especially after school. I'm not sure why he acts the way he does. Some days I just want to pull my hair out.... He is treating Alexa badly, with words and actions, and mom too..... I guess at least he is good at school....

Thanks for checking in.

After washing Asher's hair this morning, he immediately cried out in pain. In his head/neck, behind/below his left ear. I put some water in the microwave and then poured it over a towel and put it on his neck while he ate breakfast. I thought maybe it was a kink from sleeping or something. He seemed uncomfortable, but I sent him off to school; Scott took him to the bus stop. 8:15 the phone rings. It is the school nurse telling me Asher is complaining his neck hurts and she said his temperature is elevated, 99.5 (which is normal for him, especially if he had been outside for 25 minutes of playground time prior to the bell ringing). I talked to him and he was sad, but he was not complaining about his neck. I told the nurse to send him back to class and see how he does. But as soon as I hung up, I felt awful. I called Scott on his cell; he was still driving to work. I was hoping he'd say something that would make me feel better. He didn't. I called the school nurse back and asked if Asher was still with her. She said no, that she gave him an ice pack and sent him to class. She talked about his "incision scar" and "does that bother him" and a few other things. She said this was the first time she has met Asher; "He's not a complainer," she said. She said he might be coming down with something as the kindergarten class kids are sick a lot. Tell me about it. Two colds and a 72 hour flu all in one month. That's the sickest he has ever been (besides cancer), I thought. I was near in tears and said I was coming to get him. I picked him up from school. He's walking around with a stiff neck. He seems overly tired, all of a sudden. I gave him some Tylenol. At least his MRI is tomorrow....

My oldest cat, 14 1/2 year old Charlie, was put to sleep yesterday. He had been living with my mom's good friend for the last 4 years, mainly because he needed a home without young children, but I have missed him, and now he's gone. Kidney failure. I've been looking for photos of him, all weekend, since I found out he was put to sleep. I think I only saw him 3 or 4 times in the last four years. His new owners took very good care of him; he was very well loved. And, he loved his owners. But, deep inside, he will always be my baby Charlie....my first cat....got him when I was 21....

Anyway....been an emotional weekend for me....

So, felt I had to tell Asher, because he felt I was sad, and he wanted to know why I was looking at so many pictures.

Asher didn't remember Charlie. I showed Asher pictures of Charlie. Charlie was sniffing Asher's head, when Asher was 5 months old. I explained to Asher that Charlie is Dusty's brother. He asked, "Why is he his brother?" I said, "Because he is. They have the same parents. Just like Rohr and Ryder," I said. "Just like you and Andrew. Brothers." Then Asher said, "Yeah, but Dusty wants his brother back." That was yesterday....

Today I went to a pet cemetery with my mom....first time I've had to make a decision about a pet that has died....so much to think about....burial, cremation, .... On my way out the door I told Asher I was going to go see Grandma Val and talk about Charlie. I guess while I was gone he talked about how Dusty misses Charlie, and even when I got back home I heard him say it too. Whenever something came up about Dusty, he would say, "Yeah, because he misses his brother Charlie."

So, tonight, right before bed, the kids saw me making a webpage on my photo website about Charlie. It was the first time Alexa would hear that Charlie died. Asher said, "Yeah, he was old. When I get old, I will die." I said, "Yes, we will all die some day." He said, "Yeah, but children don't die." Oh how I wish that were true....


Asher has a four day school week. Friday is teacher in-service day or something like that and I had scheduled his MRI for that day so he wouldn't miss a day of school. So, Friday is MRI day, 7am checkin....if you can send warm, calming thoughts our way for Friday, and the month of September (we don't have clinic until late September), that would be wonderful. Thank you!

I was hoping for one day of vomiting, but no such luck....Asher continued to throw up anything he ate or drank. Last time he threw up was last night, Tuesday, at 7pm. He woke up well and happy this morning, but since he hadn't eaten since Saturday (or at least kept down what he ate), I kept him home to feed him meals every 3 hours. He drank well. He ate okay. He's going to school tomorrow. I'm going to take him to class though; no bus for two days. Hopefully we'll be back to the regular routine come Monday. Whew....I'm tired....

2nd week of school was okay.

A couple of mornings were a challenge to get Asher ready to go to school. One morning, he was in such a good mood, but then after breakfast he coughed so hard he threw up. His cold seemed to get worse before it got better. Anyway, after an hour to watch him, he seemed fine and was getting a bit bored and I asked him if he wanted to go to school, so when he said yes, I took him and signed him in and got him a late pass.

There is a boy in his class that he seems to be getting into trouble with. Two days in a row. I'm not sure what, maybe talking, the first day. He told me he got a timeout because he was doing something naughty with D. The second day, I actually got a call from the teacher after school, right as I was headed out the door to get Asher from the bus stop. It didn't seem major, but Asher is a sensitive child. Apparently he went out to the bathroom with his friend from class and they took too long to come back and the teacher went looking for them. There is a drinking fountain outside the bathroom, which I think is where she found them. She said she saw the other boy spitting water at Asher. She did say she didn't think Asher was spitting water; she didn't see him. She said, "He was very upset." But, I don't really think he was upset about the boy spitting water at him. He told me later that night, right before bed, "My teacher yelled at me. I cried and cried. She broke my heart." She had told me she just wanted to make sure they understood to go to the bathroom and come back to class right away. So, that's what I explained to Asher, too. I can imagine, that it would be easy to get distracted, to go from class to the bathroom, when it is outside. I grew up where the entire school was enclosed under one roof. Here, in AZ, where it is so warm, year round, there are no hallways. They walk outside each time they transition to different classrooms, or need to go to the bathroom.

I was really proud of him, by Friday I was able to drop him at the bus stop, from the van, and he stood waiting with the other two kids. I waved from the van when he was on the bus looking out the window. Friday afternoon they gave us an updated bus schedule and I saw there is actually a bus stop a bit closer to our house, so I think I'll have Asher use that one because in 2 months when the temps are cooled off enough to walk, we can walk to that stop then. It is also on a less major street in our development with less traffic (I think).

Saturday Asher was in such a great mood, until around 4pm when he started holding his tummy. About 30 minutes later he started vomiting, and he hasn't stopped. He did tell me last night that a boy threw up in class, "Not me," he said, "Just one boy." I was happy (is that the right word) when I took his temp at 9pm and he had a fever of 102. A fever is a good thing; he's sick. There isn't something wrong in his head. His cancer is not back. He's just sick. He has also been sleeping since around 8pm last night. When I saw him a couple of hours ago in bed, after he threw up (bile), he said, "Mom, leave me alone when I'm sick."


The first week I had such a horrible time, emotionally. Just felt so out of sorts! Actually, this past week too. But, the first week I realized something. I do a lot of self analyzing. I think a lot. I try to figure out why I feel a certain way or why I react a certain way. I'm my own worst critic in that way. Anyway, so the first week I wanted to understand why I felt so horrible. Was this just a control issue. Asher is in kindergarten, in someone else's care, and I have no control. No. After 3 days of wondering and thinking and analyzing, I figured it out, with the help of so many flooded memories coming back to me. As I was sitting at home, Asher at school, and feeling horrible, I realized having Asher at school, and not at home, reminded me of a time when Asher was in the hospital and I would be at home, alone, with the girls. With the exception of Andrew, toddling around, walking and smiling and laughing, it felt so much like 2 year ago when Asher was in the hospital. The day of his diagnosis invaded my thoughts part of Wednesday, that first week of school. It felt like I was re-living it. It was powerful, it was horrible. When I finally figured out how I felt and why, I had a solution. Every time I started to feel bad, I told myself, "He's not sick. He's just at school. You'll go pick him up at the bus stop at x time. He'll be home, soon." After two days of doing that, I started to feel so much better. I still feel weird, as far as him being in school and me not knowing what he's doing, etc. But, I don't feel horrible, like I'm having a panic attack. The bad memories have stayed away and I'm functioning again. I can not only take care of the kids, I can clean up the kitchen and do other daily tasks. Sounds silly, but it was pretty bad that first week.

This morning, while I sat next to him in bed, as he threw up, I had some bad feelings....about watching him throw up....but, then I told myself, he's going to be better in a day and not throwing up anymore. What a good thing that will be. I told Asher too, you'll feel better in a day or so and then you can eat and drink and play again.

Since Asher still has a fever, he won't be going to school tomorrow. I do hope he's not still throwing up tomorrow, but he has to be fever free for 24 hours before going back to school, so.....I'll have a full household, and possibly more little kids vomiting with fevers and sleeping....maybe I could be spared so that I can take care of the kids and Scott can go to work.

I'm also praying for a more healthy rest of August for Asher.

The weekend was very quick, very. Woooo, with Asher not having much playtime all week, he wanted to do lots in two days, but he was tired, too.

Asher complained about his throat hurting Friday afternoon/night but it wasn't until Saturday afternoon, when I realized he sounded sick, that I realized he was sick. Didn't help that he just told me a pretzel was stuck in his throat, and I didn't know if I should run him off to the hospital. Sometimes my boy makes things up. By Sunday morning he had a dry cough, and an hour before bed he had laryngitis (good thing for spell check on this blog software).

One week at school, already sick.

When Asher got off the bus the 2nd day of school, he was in better spirits, but he had some emotional outbursts once home. He told me he had gotten a time out at school and he was upset about it.

He was upset he didn't get to "play." And, it seems like there is so little time to play at home now too. He eats a snack once home and then watches a little TV and rests in his bean bag. Then it is dinner time and only one hour to play before bath and bed routine.

The third day must have gone better. He was not only in better spirits after getting off the bus, he was happy.

He isn't eating much during lunch. I'm not sure if he is stressed. The food I give him is the food he eats at home all the time. Yesterday after school he was starving. He had grapes and was in a very good mood.

He's gone from 7:25am-3:20pm....such a long day and I'm really missing him at home. Yesterday, after school, he told me that his teacher hurt his feelings. I asked why and he said, "Because I wanted you."

Last night before falling asleep he told me a boy touched his scar (he pointed to the back of his head). I asked him what he told the boy. He said, "I told him the doctors did something naughty back there." I reminded him he had an owie and the doctors fixed it and it was okay to tell a boy or anyone that asks. I asked him if he tells anyone he had cancer and he said, "No, that's a secret."

He's been playing "superman" with a bigger boy at recess, he has told me. He comes home with sand in his shoes and in his socks every day.

I have no idea what he does all day at school. The only thing he talks about are the time outs that other kids get (and he got one time) and a song (something about bubble gum).

Each night we continue to read before bed. Nothing new there. We have done that since he was a baby. But, now I write down the books we read each day on a log. His homework is to be read to for 15 minutes a day. We read for at least 30.

That's all the time I have now to type an update....thank you all who have written me, checked in here, and cared about Asher (and me) and this big transition! It means so much to me

I about cried when Asher came off the bus today.... He was not happy. He was tired. He was sad. I could sense it as he walked down the bus steps, so I knew right away I probably would ask very little, if anything, until he had time to rest. As I took his hand, to walk across the street back to the other 3 A-kids in the wagon, he said:

"I DIDN'T have fun! I don't want to go back! I hate school!"

Ahhhh........here's where I needed a degree in child psychology instead of civil engineering.... I decided the right thing here was to listen, tell him I was ready to listen when he wanted to tell me more about his day, ask non-invasive questions, let him rest, let him have time to himself, give him lots of water, tell him I love him, give him a smooch....in random order over the next couple of hours....


I took his backpack and his lunch bag, put them in the wagon, and gave him water. Then held his hand and walked with him, as I pulled the wagon, as we headed home in the horrible heat (I most likely will drive to the bus stop from now on)....

As we walked, I noticed Asher was walking only on his tip toes. I have never seen him do this with shoes on, only barefoot in the house (and more so right after treatment ended than currently). I saw this as a sign he was physical wore out.


He did tell me a few little things during the walk home....that walk seems very long in the heat....

He said, "A big boy helped me find my bus." This kind of worried me as the teacher told us at open house that she personally took each kid to the bus....but, suppose the class size is too big she really can't do that and has helpers. I want to find out who this helper is, if this is the case. He also had a '5' written on his hand in black and a paper bracelet on with the bus number and drop-off intersection.

He said there were two naughty boys on the bus who said, "This bus is stupid." I asked him why they said that and he said because it was too slow.

He said, "My teacher was rude. She said if we didn't be quiet it would take us longer to get out the door."

He said, "Why did you give me chips? I didn't want chips."

He said, "We didn't get to play."

He said, "I sat by a big girl at lunch. Not the boys. I don't want to sit by a girl."

He said, "I didn't like the playground, it was too hot."

He said, "I just wanted my daddy and mommy."



At home I let him cool off, drink water, rest in his bean bag and watch a kid's show on TV.

I slowly opened his backpack and folders to see what he brought home (a colored picture, a note from the teacher (form letter), a sheet of paper to fill in about Asher for "Friends Forever." I opened his lunch bag to see he didn't eat much of his lunch. I saw all his chips were crushed and broken (no wonder he was upset about the chips, because I knew he liked them).

A few more things discussed during dinner....he stepped in a puddle in the bathroom and got his brand new shoes wet....kids had to go in time out, not him, the teacher took them to the chair for time out, but not him....he didn't play baseball, only big kids did....he showed me part of a song with arm / hand motions and stuff, but he didn't remember too much of it (something about a bubble and pop and bubble gum is yummy)....



Scott got home an hour or more earlier than normal. He had called me and I told him the day wasn't so great for Asher. When he got home, Asher got a huge smile on his face, for a second, then he went running down the hall to tell him about the naughty boys on the bus and the rude teacher.... Then Scott tried to get Asher to talk more and Asher said he didn't want to, so Scott backed off, which I think was good. They went swimming then and Scott told me Asher said a couple more things about his day. He said, "He ate alone at lunch." He said, "I don't really like music."



There's probably more, but that's about the main stuff.

Today was a huge emotional day for me, for him, but I am sure each day will get a bit easier....


And, maybe tomorrow during lunch I won't get a plate out for him to eat on and Alexa won't set a place at the table for him to eat at. Alexa and I both had a little laugh about it after she said, "Oh, Asher isn't here" and she picked up the place mat she had put out for him and put it away. I told her, "Oh, and I got him a plate out." So, I put the plate back in the cupboard.

I couldn't sleep last night. I woke up every hour. I did have an alarm set, so it wasn't that I was afraid I wouldn't wake up, or was it? I finally got up at 5am. I piddled away the time, checked some caringbridge websites, took my shower, stared out at the sprinkler system watering the grass in back (seeing a few small puddles on the concrete patio from what must have been some rain last night), and then I started making Asher's lunch. Bologna sandwich, raisins, banana, pringles, fruit snacks (what he calls "scoobies"....what we got addicted to when we were inpatient at PCH), and some fruit punch in a little bottle that fit into his brand new lunch bag. When I was putting his lunch in his backpack, I thought to myself, 'This is so weird. I'm making a lunch for my child and sending him off to school.' It just feels like it has come too soon.

Before I knew it, it was 6:30am, and Alexa had come down stairs, and then Asher did too. His alarm hadn't even gone off yet. I had gone upstairs to get the girls dressed and then help Asher when his alarm went off. I smiled at Asher, "Go turn it off." Then, after he got dressed, I washed his hair (bath night before, wash hair in morning), and then made him (and all 3 other kids, since they were up) breakfast, scrambled eggs, pancakes, bacon and milk. While Asher ate, I told him I made his lunch and put it in his backpack. I told him to remember to take his lunch pack out of his backpack when he got to class and put it in the green basket by the door, where we learned to put it last Friday. I asked him his classroom room number and he knew it. I added one little bottle of water to the side backpack pocket; the rule says they can have a bottle of water as long as it is just water. I had bought these plastic bottles with flip tops (which is the drinking part of the top of the straw) so I could save money and just refill the bottles each day instead of buying Caprisun or juice boxes. While the kids finished eating (or tried to hurry and finish), I went out and got the wagon out of the garage. Now I was getting rushed. It was near 7:15am. It was about time to walk to the bus stop. I quick brushed Asher's teeth and told him to get his shoes on (dad helped him finish) while I got the girls and babiest A in the wagon. We were off. Walking very fast, and sweating in the 45% humidity, 85 degree morning.

Got to the bus stop, which is about 1200 feet away from our driveway, maybe, and waited. No other kids were there. One mom with two boys came and asked me if this was the bus stop and I told her I thought it was (she only lived 2 houses away from the intersection). We waited. Scott drove by, told me it was 7:24 on the car clock (bus was to come at 7:27). We waited some more, and more. I got a few pictures, and a video of Asher talking to Andrew in the wagon. The mom there with her two boys left and went back home. I waved to a neighbor, or two, or three. One neighbor I waved to and got her attention and asked her the time. 7:37am she said. Hmmmm, had we missed the bus? Waited a bit more, ALMOST started back home when I saw the bus coming from the south street. It stopped across the street from where we were and put out its stop sign.

I told Asher, "There it is. Lets look for cars. OK, lets go." I asked the bus driver, a nice lady, if she was going to SL. She said yes and wanted to know what grade Asher was in. She asked his name then. Then she said, "OK Asher, sit right here (indicating for him to sit in one of the front seats)." I said, "Bye Asher" and tears started to fill my eyes. He didn't say bye, he didn't look back, he just got on the bus. I went back across the street where I had the wagon still. I did turn and look to see if I could see Asher as she drove away, but I couldn't, and then tears started to stream down my cheeks.... As we walked, I cried.... Seriously, weird, I did not think I would.... Then Alexa said, "How come we didn't get on the bus?" I told her because we don't go to school. She said, "Yeah, I have to be 5 1/2." Then she said, "I'm going to miss Asher." I cried all the way home.... Should have brought kleenex.... Now it is only 8:30 and I'm so anxious for him to come home. I wonder what he is doing right now. Well, 6 1/2 hours before I am at the bus stop picking him up.... Till then....

Asher is officially excited about going to school. He met his teacher tonight. He saw his classroom, playground, and we made sure he knew which bathroom was the boys' bathroom (it is the little things, really). I'm a bit nervous about the huge class size (29 kids) and Asher having recess with kids up to 9 years old, but....all in all, I think I'm feeling okay about things.

Asher had his OT evaluation today at 8am. Today Andrew and I went with him. He cooperated really well and called the therapist by name (after only hearing her name one time right at introduction). He does okay buttoning buttons, but taking them back out is more difficult for him. He is only a little behind for his age group. The therapist said since he can write his first name well for a 5 year old, he will not get OT assistance through his school, and doesn't appear to need any weekly assistance through the hospital (her words). Schools only help when kids are 'way behind,' she said. She said I could call her or email her if I have concerns, though. She gave me some pvc pipe insulation, a piece cut off, to put over his pencils. This will help him when he is writing. She is sending me a list of exercises to help at home; she will be sending it with the report in a few weeks. In the mean time, she gave me a chunk of putty, too, kind of like silly putty. It is more resistant than playdoh, so will help strengthen his fingers. He could catch a ball if it was a light weight ball, otherwise had trouble. He also seems to not throw overhand, only underhand. He has weakness in his abdominal muscles....for instance, 'curling' the body inward or outward was a challenge for him (i.e. laying on his belly (or back) while picking up his legs to the hips and his arms and head at the neck). He definitely has almost no balance when he's on one foot, as I said yesterday. That's about all I can remember, till I get the report. She would like to reevaluate Asher in 3 months or 6 months. I think I'll have him go back at the same time as PT in January when he turns 6.

Asher had a PT evaluation at 8am at the hospital today. Scott went with him.

When the therapist talked to Scott afterwards, she said she had read his history prior to him coming in and thought, "What will he be like? What will he look like? What should I expect?" She said she was quite surprised at how well he is doing for all he's been through. He cooperated well. She said Asher is about 6 months behind other kids his age. He can't stand on one foot, still, but we knew that. She said she sees his fine motor skills are the weakest, which will evaluated in depth tomorrow. She wants to see him back in 6 months to reevaluate him; this will be around his 6th birthday.

Here are Home Activities and Play Ideas to help Asher (which she gave us):

-Overhand throwing with different sized balls and types of textures, start working on 'targets' (for 5-6 year old, we use a 2ft x 2ft target)
-Catching with different textures, sizes, and weights of balls
-Anything in the water/pool: play games, have "races" in the water with walking or moving, kicking with kickboards, etc.
-Standing on one leg ('make sure to switch legs') for activities during the day: during commercial break on t.v., brushing teeth, combing hair, playing catch
-Pillow fights with couch cushions for strength, endurance, and coordination
-"Red Light, Green Light" and "Simon Says" types of games for coordination, quick responses, separate upper body vs lower body types of movements
-Step-standing for catch/throw activities: one leg up on a small stool or step while the other is on the ground

Asher doesn't pay attention.

He is very inattentive.

Inattentive.

Inattentive.

This was repeated to me a lot, today, while I heard the results of Asher's neuropsych evaluation from last month.

I know....I know....I'm worried about it. It has gotten worse over the last year, too. She told me he should be okay, depending on the teacher, this year in Kindergarten, but to be prepared for the possibility that he may need medication.... (Nothing can prepare me for that.) She said he will need to sit right by the teacher; if there are rows, he should sit in the very front. She said sometimes in kindergarten they sit in a circle though....

Other than that, which is a pretty big problem for him starting school, he is average or above average on most of his testing.

He is very visual. He will do awesome at visual learning.

He is below average when it comes to verbal stuff. If he hears a story, he can't repeat it back, for instance. But, if he is given a choice (i.e. was it a brown dog or a black dog in the story?), he will do better. And, he can't list things. For instance, if asked, "List as many animals as you can," he will say, "Lion, 2 lions, 3 lions," until the doctor says, "OK, more," and then he will say, "Rhino, 2 rhinos, 3 rhinos." When asked for a grocery list, he said, "Strawberries, strawberry shortcake, strawberry cream...."

She said she doesn't see Asher asking for help or clarification if he needs it. She said he would just sit and do it, best he could, but maybe do it wrong, and then be crushed (disappointed) when he is told it is wrong.

She also said he is a 'serious' boy, although, a few times he purposefully answered with wrong (not pertaining) answers, and then smiled at her. One time he started whining and she told him to stop whining and he did. She said he took it fine; his feelings weren't hurt. She said he needs a gentle but firm teacher, and he needs big praise for success!

He has a good memory, she said.

His IQ is exactly the same, testing on 2/07 and 6/08. I think she said it was 98.

She said he is VERY shy and will be for awhile till he gets comfortable with the teacher and other kids. She said, most likely, when the teacher calls on Asher he will just stare at her and not answer (he did that to her at times, she said).

She said she also noticed he was clumsy when he walked. I told her I noticed the same thing when he has shoes on. It seems to have gotten worse, over the last year. He trips over his own feet. She said he should have a PT evaluation, as well as a OT one and a speech one. She feels he doesn't talk or understand speech real well / doesn't have a varied vocabulary (not sure how to say that). I don't know about that. I don't understand, after all this time, why they are waiting till now to recommend these evaluations. Why couldn't the oncology team recommend/order the evaluations prior to now, only 10 days away from school starting?

She also said I should call the school and discuss the IEP ("Individualized Education Plan")....or even a "504 Plan." He definitely qualifies, she said (even without radiation). She said once it is in place, it is good for up to three years. The fact that I would have a bunch of tests already done, at PCH, would be helpful, as the school gets so busy, she said. Although, if the school wants to test themselves, let them, she said. I don't know why I haven't wanted to do this....I'm so reluctant....

I'm feeling pretty emotional today, deep inside. It isn't just that my baby is starting school, it is my baby that had a very serious illness that is starting school....

I don't want to let him go....

I'm excited for him, though....really....all that he will learn....the friends he will make....

I'm just scared, in general. I need to let it go, though, because I know Asher can sense it. We are very close that way. Maybe I can double dose on the Zoloft for a month or so. Hahaha. Wouldn't it be nice if there was a magic vitamin to take all anxiety away....

On a great note....Asher and I were in Anaheim, CA this past weekend at a National (model) Train Show and Disneyland. We had a great time, a really great time. We even flew instead of me driving 11 hours, so we got more time in CA Wonderful memories for the two of us.... I wish Scott had wanted to go, so that we could all have been together, but, I loved the one-on-one time with just Asher, too. I'm glad for those memories.

15 months post-transplant

Brain - Impression: No evidence of tumor recurrence.

Brain - Full Report: Midline suboccipital craniotomy changes are noted. Parenchymal {pertaining to the parenchyma (the key elements of an organ essential to its functioning, as distinct from the capsule that encompasses it and other supporting structures) of an organ} volume loss is seen in the cerebellar hemispheres. No focus of enhancement to suggest recurrent tumor is seen. The ventricles are normal in size and position. No enhancing intracranial lesions are present. Mild gliosis (scars in the central nervous system) is present in the posterior fossa (a small space in the skull, found near the brain stem and cerebellum) adjacent to the resection site.

Spine - Impression: Normal MRI of the cervical, thoracic and lumbar spine. No evidence of metastatic disease (in other words, no spread of cancer from brain to spine).

Asher woke up with a cold today so I emailed the clinical nurse to see if I should cancel clinic tomorrow or just have him wear a mask and her answer:

"Hi Steph, You are so considerate and obviously a Mom who has had a child travel a very tough road. He certainly can still come in and a mask would be a great idea. I appreciate you thinking of others. I look forward to seeing you tomorrow. Annie"

So, I'm going to have my mom over to watch 2-3 of the other kids while I take Asher to clinic. Just don't want to spread more germs than needed. Asher has already said, "I have to wear a mask."

We'll get the MRI results and the oncologist will check Asher over and they will say how great he looks and then we'll head home. I noticed my tummy is in a few knots about hearing the results of the MRI in clinic (I prefer phone calls), but I expect to hear clear scan results. I'm not prepared to hear anything but good news. Most of the time I wish this stuff could just be done over the phone, but like a good friend of mine said, they wouldn't get paid then.

How about the gas prices? I filled only 1/2 a tank Sunday at $4.19 a gallon. Yikes! Seems the only time I leave the house is for medical appointments now!

Asher did his first two hours of neuropsych testing last week but it is difficult to keep him focused on the boring testing. So, I'm bringing him back for about two more hours of testing this Saturday. I'll be signing a release so after the doctor scores everything, she will be calling the school in July to discuss Asher. So far she says Asher is very visual, right-brained. That sounds right.

Here's a photo of Asher yesterday; he actually looked up and let me take a nice photo (no tongue sticking out). He was doing a puzzle at the table. It was picture cards where you fill in the things (i.e. rocket, robot, flower, etc.) with foam shapes. He did awesome at it. He's been running around shirt-less for two days now....with the 114 degree heat, who can blame him. I gave him a haircut last week; his head was always hot with all that thick hair! He was quite mad at me for cutting his hair (talked about being bald, talked about his scar), but I told him it would grow, and fast. The reason it got so short was because he was crying almost the entire time I was trying to cut, so instead of using a scissors, I used a clipper with a one inch guard.

I realized today I'm starting to forget how to do things....

I went to admitting to sign-in and got Asher's paperwork in record time and then sat back down. Then I started to wonder why they weren't calling Asher's name. Then 10 minutes passed....then 10 more....then I was like, what the heck....

OH! Wait, I'm supposed to go down to radiology and give the paperwork there and sign-in and fill out more paperwork.

What has it been, only three months since I went last? How many times have we done this in the past two years?

Yeah, so it is nice, to be getting a little further away from the memories.... Not so nice feeling dumb, but.... Whatever.


All went well at the hospital today. We checked in, Asher played Toy Story on their video machine, I gave him a smooch and high-five, then he went off with the nurse to have his MRI (he talked with her about his boat (remote control one for the pool) as they walked off together and I walked the other way), then they called me in because he was done, the volunteer told me his 4 year old's name is Asher, I saw Asher (almost couldn't find his bed) all bundled in blankets, the nurse that took care of him post-op laughed because "Asher was popular," everyone knows him, she took out his IV (in his foot), then I asked her to bring a popsicle, a big colorful one (she said, "Oh, he wants a bullet?"....I didn't tell him it was called that, I thought that was weird), then I helped him wake up, he said he wanted to go home, I put him in the stroller (thankful I remembered it this time as he is 43 lbs and too far to carry out to the parking garage!), and started outta there, with Asher saying, "I want to go home," while holding his popsicle. On the way out, we ran into the M-Th, floor 2 nurse, "A," and she said, "Well, it is a good thing Mom is here or I would not have recognized you, Asher." She said we made her day.

The neat thing is, Asher and I have a good time going for his scans, now. We laugh, and giggle, and talk, and it is nice, just us. We don't get enough 'just us' moments. Three times Asher said, "Mommy, I love you," while we were at the hospital....and that was a lot seeing as that was all in one hour (and the rest of the time he was sleeping). I rarely hear that at home!

We were gone from 6:30am-11am. Not bad at all!


A good online friend, Ryan's mom, said my last post gave the feeling of peacefulness....

I am calm, and peaceful. I don't mind going for MRIs and treat them like any other 'normal' medical checkup, now. I don't even need the results right away.

I'm truly living in the moment.... I guess.

I do occasionally have the 'what-if' thing going on, and yes, I think about it when Asher is in the MRI and I'm out waiting for him, but today, I was more thinking about Alexa, in Ohio, who is in the hospital because she has a fever....I think about the other kids....and I sit and pray for them, as I wait for Asher to be done with his little nap....


Thanks for the notes/emails today & thanks for checking on my sweet boy. He's a huge part of my everything, and it means so much that you check in on him, more than you will know.

(Two years ago, 6/15, Asher had his 2nd and final craniotomy to remove his brain tumor. It was a miraculous operation and would be just the first little step towards complete healing.)

It is that time again. Tomorrow is Asher's routine MRI checkup. It is bright and early; we'll have to wake him up to take him there.

I told him today, during breakfast, about going for his brain picture. I told him his dad would wake him up early to go and after his picture and he wakes up he can have a special cheeseburger. He said, "And a popsicle?" He likes that now, getting a popsicle in post-op when he wakes up. It made me smile when he said that.

I expect nothing but good news....a clear scan!

Next week is his neuropsych evaluation at the hospital. I'm going to be interested in seeing how that goes, if I'm allowed to watch this time.

The week following that is clinic appointment....I don't think I'll have the MRI results till this time (as last time they said they do NOT do them over the phone).

So, I'll update again when I have more news.

Thanks for checking in on my precious boy.

2 years ago we saw a picture of our 3-year-old's brain that would throw our family into nightmares, night after night, for awhile....

2 years later...

is now...

We have come a long way, together, in 2 years. Andrew might have only been a dream 2 years ago, but even he was part of the plan for healing. We are complete. We are healing. It takes time, and Zoloft. I went back on it last month, or whenever that was, because I was m-i-s-e-r-a-b-l-e. Unless you have suffered with depression, I couldn't even tell you how it felt to go off the Zoloft, not the first time when I got pregnant with Andrew, and not the second time this past February....but I'm doing better and I've decided I need it now and it is okay.

We celebrated Baby A's 2nd birthday today, just immediate family. She turned two on 5/20. We had a party just the 6 of us. The weather has been so beautiful here the last 3 days after the cold rain we had at the end of last week.



To whomever catches our balloons, may your wishes come true, too!

Please pray for Alexa. Not Asher's sister, Alexa, but a young girl in Ohio. She was diagnosed with the same brain cancer as Asher, about one month before Asher (so 2 years 1 month ago). I had followed her journey through the last part of her treatment up to today. In her latest routine MRI, three new spots showed up in her spine (not in her brain). This cancer is known to spread through the CSF, from the brain, to the spine. She never had it in her spine before and her spinal tap came back clear (I don't understand this). Several doctors have all concluded, it is Medulloblastoma recurrence. I think she was only out of treatment 10 months or so. Please pray for her as she fights her fight again!



Note to self: radiology will never stop scanning Asher's spine just because they feel like it

Yesterday Asher had his first pediatrician well-checkup since she sent him off to MRI because she suspected he had a brain tumor. That was 23 months ago. He has started up with his vaccinations now. He got five shots yesterday and he was not happy about it. His next set of shots will be in six months, October 23, 2008. He is about 50% for both his weight and height.

Asher is feeling well, is physically doing well, and is enjoying drawing and writing, which is pretty new to him. He is swimming almost everyday, about 2 hours a day. He does use arm floaties, but he is swimming well. Last week he decided he would float on his back and then swim the length of the pool on his back. Asher still likes to cook, but he has gotten into a comfort zone. He is becoming more picky and wanting to eat only what he knows or what he can make.

A year ago Asher came home after completing his last round of chemo and a stem cell transplant. Amazing what a year can do.


Kit, March Idea Notebook, by Gina of Digital Design Essentials; Font, Bell MT

We finally made it up to Flagstaff today. Asher got to see his first snow along the highway. He then got to feel his first snow with his fingers, as he learned to make a snowball and throw it at his dad's head. He made a snow angel; immediately after making it he stood up and stomped on it with his boots. It was a very pleasant, relaxing, wonderful 1 1/2 hours. We drove longer than we played (six hours to be exact), but it was oh so worth it! We were at elevation 7600 feet, in the Coconino National Forest. It was 53 degrees fahrenheit outside. The snow is melting and the Wing Mountain Winter Snow Play Area is already closed. Snow Bowl is still open, however, for skiing (and I think sledding). I fully intend to get Asher up to play in snow more next season.

Asher had a nap on the way home (his sister, Alexa, didn't need one (she just turned 4 today)).

When we were almost to Grandma Val's house, to pick up the babies, Aubree (22 months old) and Andrew (8 months old today), we saw six hot air balloons over some mountains during sunset. Just last night Asher and I were reading a book about modes of transportation and a hot air balloon was one of the modes. I'm seriously considering taking Asher up in a balloon; not sure when, but he and I have talked about it. He does tell me that we can't go up to space in a hot air balloon though, we would need a space shuttle for that.

No evidence of disease!

phew

When Annie called me, she said, "I got your email. No, I don't give MRI results over the phone, because it could get awkward. But Dr. looked at the results and gave me the okay to call you."

Yeah, I had emailed her last night because I feared they had no intention of calling me with the MRI results. When I was called in December, it was because they wanted to post-pone the clinic appointment a month, so they told me the MRI was clear and asked, "Could we reschedule you?" So, I guess I was right. I would have had to wait till 3/26 for the MRI results. Well, pooey. That would not have worked for me.

And, what would be awkward? Well, maybe awkward for her, but not for me. Nothing could be worse than the call I got on 5/26/06 around 5:30pm, when I was home alone with 2 daughters, one of which was 6 days old...."There's a mass growing in the back of Asher's brain...."

Really....I've been thinking....no call could be worse than that day, even if the MRI showed suspicious spots, or a big mass, I mean, I've been there, and even in the depth of my mind, I know that call could come some day. So, if the MRI showed something this week, I mean, what the heck would they have done? Just ignored it for 2 weeks till clinic....? I doubt it. I am sure they would have called and moved the appointment up, had another MRI done, or something....and in any of those cases, I would know something showed up on the scan. In any case, I will be talking to them on 3/26, at clinic, to find out what is the routine then since I was sure I would get a call.

OK....enough talk about the 'what-if.' The news is a sigh of relief. I never celebrate, or get excited.... I just calm down. My nerves relax. My mood becomes evened out. No more nausea, migraines, or diahrea. And, life carries on. I was this close to starting back up on the Zoloft this week, especially yesterday....my goodness....I was a mess, no matter what I did! I'm okay today, though, so I think it was just temporary anxiety....I was a bit nervous because Asher has been getting up in the middle of the night for a week, and, well, I didn't want to mention it because I didn't want anyone else to worry. But, I was worried. Now I know my son can get up in the middle of the night for no reason....it doesn't mean his cancer is back.

Thanks for the emails and prayers!!

The phone just rang. It was PCH. When the lady started talking, I thought, 'This isn't Annie. What's wrong?'

Ahhhh, it was just the gal wanting to know if Asher did okay after his anesthesia. I always forget they call....I used to ask them not to call me but the last two times I have forgotten.

So, now I feel like throwing up, because I got butterflies as soon as the phone rang, but it wasn't MRI results, so the butterflies never went away.

I think I'll clean house while I have two babies sleeping....maybe that will help waste the time away....

Scott woke me at 6:05am, today, to nurse Andrew....I couldn't go back to sleep while nursing (and normally I do). By 6:50, I made Andrew stop nursing so I could go to the bathroom, which is where I spent 20 minutes, and this was expected. No matter what I tell myself or what I think I'm doing (trying to ignore MRI day 'bad' thoughts), the overnight anxiety always reveals itself in bowel problems first thing in the morning. Always. I'm never spared that. At least it happens quite fast and I could still shower and get out the door on time.

I had to reinstall the carseat in the SUV before leaving this morning (Scott had taken it out to buy something big to put in the back of the SUV). It was pretty easy. After getting Asher buckled in and backing outta the driveway, Asher yelled at me to put my seat belt on until I put it on (which I always do once I'm outta the long driveway). Then I got to a stop sign and Asher said, "I love you more!" He thinks he is pretty silly saying that, skipping the other stuff.... I always had this thing with Asher, when he was 3, I would say, "I love you Asher." He would respond, "I love you too." I would quickly say, "I love you more!"

I was driving in the HOV lane (2+ people per vehicle). Asher told me, "You had better hurry and get there so they can put me to sleep or I'm going to fall asleep in the car!"

We left the house at 7:45am and made it to audiology by 8:34am.

The hearing test was 30 minutes late. It went fine. He enjoyed playing with a barrel of monkeys to indicate when he heard the noises. Seems to me, based on my memory, that the high frequency hearing loss is the same as it was last year and the right ear is awesome. So no worse; good news. He can hear for conversations just fine.

The MRI didn't start till 12:30pm (it was scheduled at 11am). The wait felt horribly long, longer than 1 1/2 hours. Mainly because it was really longer as the hearing test ended at 9:30am and then we sat around waiting for MRI. With RSV season, I couldn't go too many places with Asher, just admitting, and radiology waiting. So....it was boring. I wish I had brought more things for Asher to do. I will next time.

There was one point where I was growing so tired, I wanted to lay on the bed in pre-op and sleep! Asher was getting irritable, and kept saying, "I want them to call my name. I want my MRI now." I told him I was sorry he was hungry and promised we would do McD's drivethru after he woke up. Then there was a quiet moment in Asher and I looked at him and I found myself wondering.... I wondered, "How long will he live." I wondered, "What kind of job will he have as an adult." I wondered, "Is he going to live with no more cancer....or....will I lose him." They were quick thoughts, ugly, but quick.

I don't want to know the future. I do want to live in the moment. I want to remember, that ultimately it doesn't matter what tomorrow holds because it isn't here yet.

When Asher went into MRI, I gave him a high five and smooched his cheek and he smooched mine. I didn't even go into the MRI room with him.

I found a bathroom. Then I got a salad from the cafeteria, that and a Mountain Dew and a vending machine bag of pretzels. Waiting 1 1/2 hours for him to be finished went okay, too. I was quite tired and thought it would be nice if I could have napped, but I was actually surprised when they called me so soon. They did brain and spine MRI, an ECHO, and blood draw while he was under.

The post-op nurse was happy to see Asher. When I got back to her she was fussing about him, saying how great he looked and how she saw Scott at Khols during the holidays but didn't want to bother him, but really wanted to ask how Asher was. She said as soon as she saw the copy of my driver's license, THEN she knew it was thee Asher and she had them call me right back to see him, earlier than they would most parents. She was funny. She made me smile. She made me happy. She asked me how I feel when I come back to the hospital and I said Asher and I were both smiling and happy today. And we were. And, it is nurses like her that make us happy to come back. There are painful memories, but my son is healthy and that is because of PCH and the doctors and nurses inside of it. I actually was hoping to run into some nurses and doctors that I knew, but I didn't see anyone today. I didn't even recognize the anesthesiologist. Even he said he didn't think he took care of Asher before, and he said, "I am not sure how that can be with all that he has been through."

Anyway, Asher took a long time to wake up. Removing the IV in his ankle didn't even wake him up. I then started making him sit up, talking to him, touching his head and face, and then he said he wanted to go home. He slept so long that his popsicle was dripping into the cup when Asher picked it up to lick it.

I carried Asher out to the SUV in the parking garage. I had to put him down three different times to take a rest; he is so heavy! He was so sleepy that there was no way he could walk. Usually he can walk 1/2 way. Not today.

I did as promised, and when we were almost home I went through the drivethru and got him a plain cheeseburger and medium french fry ($2.15). He had already finished the popsicle (eating and drinking it). The french fries were hot and he told me, "You should go back and tell them to not make them so hot." I told him to eat the cheeseburger first. Luckily he has never had a nausea problem after anesthesia!

We got home around 3:45pm.

I haven't even looked at the MRI CD. I think I will just wait for the call tomorrow; hopefully they call with the MRI results then.


I have to admit, that I was surprised tonight. I only heard from 5 people prior to the MRI and this evening. Three in the guestbook, my mom (yesterday and today she called me), and then a neigh