Sunday, March 28, 2010

Colby just informed me that it is time to update the blog, so here I am! The girls are on spring break this week, so we're all happy about that. We don't have any plans to go out of town, lots of little things to do. Hannah has to go back to the dermatologist this week to check to be sure that the last mole was completely removed. We will also check her whole body for any other marks.

Here are some pictures of us at the bird sanctuary in Southampton. It's a really cool place, birds land right on your hand...or head!




We had Hannah's teacher conference this week. She is doing remarkably well, with her two lowest marks in science and math (the only 2 categories in which she is below grade level). Her biggest challenges are processing speed, memory retention, planning and organizational skills, attention deficits, fatigue and nausea. Umm, think that's enough? Her teacher this year in 5th grade is also the same teacher she had for 4th grade and we love her. She has such a good understanding of Hannah's issues, and has been able to see the progress that Hannah has made over the last two years. She makes modifications when Hannah needs them, and knows how to motivate Hannah. Next month Hannah has two state tests-the English/Language Arts and only 2 weeks later the math state test. Frankly I could care less what her scores are, but the tests must be taken.

Her teacher did recommend that Hannah be tested for an IEP-Individualized Education Plan. Public schools are required to develop an IEP for every student with a disability who is found to meet the federal and state requirements for special education. Up to this point Hannah has had what is called a 504 plan-which is different from an IEP in that it usually only makes accommodations for physical issues for a disabled student. Our school has been very good about providing anything that Hannah has needed, even under her 504 plan. Anything we have asked for, they have provided. However, now that Hannah will be in 6th grade next year, she will need an IEP to qualify for some accommodations-especially in math. Six grade math moves very quickly, and we know that Hannah will struggle. With an IEP in place, she will be able to be pulled out only for math, which moves at a much slower pace. She will have to qualify for an IEP-I believe the testing is similar to the neuropsychology testing she has had done.

Enough of that-Hannah did participate in the science fair this weekend. Here she is with her project-Temperature and Crystals. She had note cards prepared to help her explain the project to the judge, and she did well. She wanted to do a food project because she likes to cook.

As far as me, I'm 2 weeks post surgery now and not doing great, unfortunately. It was bladder surgery that was supposed to be relatively easy. I have been back to the doctor about 12 times, spent a day in the ER and had many complications which probably don't need to be spelled out here. Mom and dad stayed on for an extra week after Colby's birthday to help, which was definitely a big help since I couldn't drive and am still on Valium. Back to the doctor again tomorrow, still keeping an open mind.

Happy Spring everyone, let's hope it starts to feel like it soon!
♥Kim

Sunday, March 14, 2010

It's been almost a month since my last post, wow! First I wanted to say: HAPPY BIRTHDAY COLBY!!! Colby turned 13 years old today, hard to believe it but it's true. She is the best daughter we could ask for, and we couldn't be prouder of her!

Hannah has been doing well. She had a clinic checkup this week. There were several issues I had to discuss with her oncologist. About a month ago I decreased Hannah's medicine. We want to continue to try to decrease it, although she may never be completely free of it for nausea. That has worked well, and she didn't even seem to notice the change.

She continues to experience fatigue. She hasn't been out of school lately, so that's good, but I can see it's building. She has been experiencing more stomach aches in the mornings the last few days and looks exhausted at night. We try to keep her bedtime consistent, in bed by 9pm each night, at least on most nights. She just can't keep going consistently like we can. Whether this changes over time or not, is yet to be seen.

I also spoke to her doctor about her height. We know that last year she grew at just half the rate of normal. She seems to be slowing down even more. This is really an issue for her endocrinologist, and we see him again at the end of June. Hannah is at the 3rd percentile for height, but we think she may be falling below that line now. We discussed growth hormone, it's uses and it's effects. Hannah is now 2 years and 3 months out from the end of chemo, so he feels the use of hgh is safe as long as it is used only to supplement what her body isn't producing. There is research to support that doses used at these levels are safe and do not increase odds of recurrence of tumor. Conversely, our oncologist does not advocate the use of hgh at higher levels than the body produces, in order to stimulate growth. There is no research that supports the use at these higher levels, and we just don't know if it's safe. Believe me, this is a very simplified version of what all is involved. This is an issue for discussion the next time we see the endo.

I also spoke to to the doctor about gene testing for Hannah. I have been reading about specific gene mutations of kids with medulloblastoma. I read an article recently regarding recurrence of kids with "average risk" medullo (ie: Hannah). Here is the article in case you are interested:
link here.

His comments were interesting. He pointed out that even if she did not have this mutation, that could provide us with a false sense of security since medulloblastoma is not linked only to this one gene mutation. If it were as simple as that, a cure would already be found. There are several other factors and/or gene mutations that could be involved in this disease. He wasn't adverse to testing, and would make it happen if we wanted to push forward, but didn't want us to rely on only this one test. Also, with Hannah already more than 2 years out from treatment, she is most likely past the window of the type of recurrence discussed in this particular study.

So, for the mean time, we will just keep our eyes open for these type of things, without living in constant fear of the unknown. At some point you have to focus on the life ahead without recurrence, rather than just waiting for the other shoe to drop.

Signing off for now. I am having surgery tomorrow and have to be at the hospital at 5:30am! It's nothing too major but will be in the hospital overnight and then at home recovering. Mom and dad are here taking over for now, thank goodness for that!

♥Kim