Posted by Steph in
0 Kindergarten, 1 Year Post-Treatment, Scans, on Wednesday, September 3. 2008 at
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.
Posted by Steph in
0 Kindergarten, 1 Year Post-Treatment, on Thursday, August 28. 2008 at
Posted by Steph in
0 Kindergarten, 1 Year Post-Treatment, Feelings, on Sunday, August 17. 2008 at
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.
Posted by Steph in
0 Kindergarten, 1 Year Post-Treatment, on Monday, August 11. 2008 at
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.
Posted by Steph in
0 Kindergarten, 1 Year Post-Treatment, on Thursday, August 7. 2008 at
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
Posted by Steph in
0 Kindergarten, 1 Year Post-Treatment, on Tuesday, August 5. 2008 at
"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.
Posted by Steph in
0 Kindergarten, 1 Year Post-Treatment, on Monday, August 4. 2008 at
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....
Posted by Steph in
0 Kindergarten, on Saturday, August 2. 2008 at
Posted by Steph in
0 Kindergarten, 1 Year Post-Treatment, Feelings, Tests, on Wednesday, July 23. 2008 at
He is very 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.