Thursday, February 26, 2009

Good News!

This week Matt had his first set of MRI's since his December surgery. We went down to the appointment fully expecting to talk dates for his 4th craniotomy to try to get rid of the rest of the tumor, and then radiation. I have always felt uneasy about radiation. The thought of radiating my 10 year old's brain just freaks me out! I know it might be necessary some day, but will happily push it off as long as possible - forever would be excellent.

Anyhow, Dr.Walker (the neurosurgeon) was pretty psyched to see that the remaining tumor is stable! You have to understand what 'stable' means to our family. Matt will most likely always have some tumor in his brain. It is not in a spot that the doctors can just remove it. Stable is about as good as our world gets! The tumor actually measured a bit smaller than his December MRI showed. This was most likely due to swelling that is present right after surgery, but is gone now. Because of the stability, Dr.Walker recommended doing NOTHING! No radiation, no surgery, no chemotherapy, nothing at all! We have to clear that idea with Oncology, but I don't anticipate them arguing with the recommendation. This is very exciting news for us, as Matt has been on some sort of treatment since August 2007. By the time Matt gets his next MRI's, he will have been free from treatment for 5 months. This gives us a wonderful chance to focus on his Endocrine issues. These are more difficult to manage on a day to day basis, as after every surgery we have to work hard to get him stabilized!

So, basically, unless we see a physical change in Matt that necessitates treatment earlier, we are FREE until this new little one arrives to our family. I think it's a tremendous blessing!

Some sad news, though, my Grandfather passed away last Friday, and we had his funeral service today. He has been in poor health for several years, but it still makes me sad to see his time on this earth come to an end. Matt was particularly sad. With his strong emotions coming through uncontrollably, funerals are very difficult for him to attend. He loved my grandpa, and would often receive coins as gifts from Great Grandpa Willie. Great Grandpa will be missed by our family - and especially by my tenderheart little boy!

Monday, February 09, 2009

Words. Eating them. And sharing them.

Sharing my words:
Today at the grocery store I ran into a friend from high school. It is always surreal to see someone from your past in such an unexpected place! It was fun to chat with her and meet her beautiful daughters. In the course of the conversation she asked what had brought us to Cache Valley. To me, this story is very much a part of Matt's cancer story. We had been living in Chicago, we started feeling pretty strongly that it was time to move closer to family. An opportunity arose (Warren working from home is not a 'normal' opportunity. Very few people at his firm work from home, and it really is an unusual situation) and we moved close to family. Less than 3 months later, Matt was diagnosed with brain cancer, had his first craniotomy, and was on chemotherapy. So, you see how the 'how did you end up here' conversation inevitably brings up the 'my son has brain cancer' conversation? I'm just never sure that I should dump our story on a friend I haven't seen in 14 years! On the one hand, it feels a little 'pity party-ish' to dominate the conversation in this way. On the other hand, I think my feelings would be hurt if an old friend didn't mention something about her child with cancer and I found out through the grapevine. It's so awkward! I'm just not sure what I would say to me if I was hearing my story! :-)

Eating my words:
I've always had pretty strong feelings against over medicating children. I think ADD and ADHD can be mis-diagnosed and that too many of our children are being medicated. I am a big proponent of good mental health and believe in the issues that need to be treated. I just feel like many children are walking around in a medicated daze.
So, of course, in the way that happens the longer you are a parent, I am having to eat my words and admit that sometimes our children do need to be medicated with drugs that I've always been horrified about using on children.
Matt's last surgery has created two new issues. First, his hypothalamus no longer will regulate his appetite. This translates into an almost insatiable appetite. You know that, 'I can't move I'm so stuffed' feeling you get after Thanksgiving dinner? Well, Matt doesn't anymore. His hypothalamus will also make him put on weight even if he is eating a reasonable diet, and his body will not burn calories in a normal way. We are working hard to try to avoid 'hypothalmic obesity' at the moment. Matt entered the hospital weighing 63 kg. on December 11th. Right now he is hovering around 70 kg. That translates to a weight gain of 15 lbs. in less than 2 months. It's scary! We saw the Endocrinologist a few weeks ago and he put Matthew on an appetite suppressant. It does seem to be helping! Hopefully we can train Matt's mind to eat the right amount, even if his body isn't helping to regulate that at all!

Our 2nd issue is concerning Matt's 'frontal horn'. Apparently, this part of the brain helps control and regulate emotions. Matt no longer has a frontal horn. The neurosurgeon thinks it was eaten away by tumor. Ever since Matt's diagnoses we've noticed some mild mood lability - getting overly upset about small things, etc.... We feel very lucky because some brain tumor or brain injured kids get really angry or really mean or really violent. Matt isn't that way at all. He just can't stop himself from getting extremely upset about really small things. For instance, the other day he misplaced his shoes. We were looking for them and I saw that they were under the table. When I called Matt over to show him where they were he began sobbing pretty hysterically and saying, "I'm such an idiot - they were right in front of me the whole time! I feel so stupid." It's sort of bizarre to see someone get so upset over lost shoes! Then, the most recent episode happened at school. Apparently the computer teacher asked the children to only print out one of their book reviews. She said that she would take any extras that were printed out, and she made sure to ask the children to only push the 'print' button one time. Well, Matt accidentally double clicked the button and somehow ended up with 3 extra copies of his assignment. He burst into tears in computer lab, in front of all his friends. When I asked him what had made him so upset he said he was embarrassed because he 'hadn't followed the rules'. I tried to explain that we all make mistakes and that it was no big deal. I pointed out that no one in class had thought it was a big deal, and even the computer teacher hadn't been the least bit upset. He was still devastated that he had done something 'wrong'. That day, I knew we needed help, so I called the clinical psychologist who we've worked with in Oncology - an absolutely amazing resource and wonderful person! He went and talked to the head of Child Psychiatry and they were able to get us in right away. This doctor was so nice. He recognized that the problem was stemming from the damage to Matt's brain and prescribed a low dose medication. He also recommended some therapy sessions which he is going to do. He said it would be helpful to teach Matt some strategies for dealing with these feelings before they make him so upset. I am thrilled! We go back next week for a medication check, and Matt's first therapy session.

So, now I've got my child on appetite suppressants and anti-depressant/anxiety medications. I do think they are a necessity, and I also think we've been seeing results from them both. But, I have sure had to eat my words and re-arrange my feelings about children on both these types of drugs!

Oh, and on a happy note, Matt won at the next level of 'Reflections'! Now his poem is being judged at State! If it wins at State (it is one of 20 entries for his age group), it will go onto Nationals! We are so proud of him and excited that his writing is receiving recognition. It's so good for him!

Thursday, February 05, 2009

Funny, no?

I was just sitting with Matt and Will at the kitchen table while they complete their homework. As I was correcting Will's math assignment I came across this question:
60 seconds make one:
60 minutes make one:
24 hours make one:

Pretty straightforward stuff. Here was Will's answer:
60 seconds make one: minute
60 minutes make one: WHORE (misspelling hour)
24 hours make one: day

Perhaps it's my lack of adult conversation (Warren has been travelling a lot and is in Chicago right now), or my dirty mind. I don't know. I do know that it made me laugh out loud....... and it's not like a joke I can share with my 7 and 10 year olds. So, here I share my warped mind and confess that sometimes my children's homework makes me laugh. :-)