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!

14 comments:

MoziEsmé said...

Way to go with the poem, Matt!

K said...

Hugs to you, Allison. I think that you're right---people do want to hear your big news from you. And I hope that the medication helps Matt feel better and more in control. Good luck at State!

Joe said...

My 4 year old has some hereditary anxiety issues that result in mood swings (usually to the sad side of the coin) paired up with an acute case of LBS (Little Boy Syndrome, aka ADHD).

He's currently taking Focalin (generic: dexmethylphen) which works very well, and it's also an appetite suppressant. That might get two birds with one stone for you guys.

- www.JoeLevi.com

Dina said...

I've learned as I've gotten "older and wiser" that I'm not right about SOME things I was so judgmental about. I think you have to walk the walk in order to understand. It makes me more compassionate now for people who are going through something I don't understand. I really listen with empathy instead of judgment. ADHD is much more than a kid being hyper. Good for you for getting him some help with this! Does he have another surgery coming up?

EmilyCC said...

Every time I read a post about Matt and his medical issues, I think, "Gosh, he's lucky he has a mom as on top of it as Allison!" This post makes me all the more sure.

Tell Matt good luck at State!

Lindsay said...

Your posts are always so inspiring. You have such a great attitude with all the incredible challenges that face you.
Awesome job, Matt. Good luck at state!

♥ Somebody Loved ♥ said...

Congrats Matt. (on your wonderful reflections poem)

I just got back from Logan. I thought about the strangers whose blog I read... and have never met.

In my life's journey...
I have had to eat my words on so many occasions. You find out there are always worse things than you feared.

ToOdLeS.ShEiLa

Malisa said...

I have had the same aversion to medications, but I am realizing more and more that it has its purpose. I think we probably shouldn't make a judgement call unless it's our child - like in this case yours.

We've had enough of a behavioural roller coaster with one of our children that we've been in for counseling, but thankfully, they're not at the point that medicating would be needed.

Christina said...

Thanks for sharing your post. I I was a long-lost friend, I would definitely want to know your story.

And poor Matt -- I'm glad you're getting help with his very real difficulties. You're a great mom!

Huish Family said...

We're glad you are on top these things going on with Matt... none of us can understand how he is feeling... the kid has gone through so much! You all give each other big hugs for us. And give him our congrats on his poem... he deserves it.

Love, The Huish's

Karen said...

All I can say is, I have eaten my words so many times in my life! I have learned that as soon as I say "I would never", I feel a curse.

As far as sharing, I go through the same thing. I just found an old friend from high school and I haven't seen her in over 23 yrs. So very awkward to tell her about my children, but it's my life.(I just posted something similar on my blog a while back.) This is what your life is right now, whether it sounds like "sympathy seeking" or not. It still is hard to spring that on someone you haven't seen in a long time, I know.
I am so glad you are finding things to help Matt. I hate medication, but yet it really can be a blessing.
Congrats to Matt and GOOD LUCK AT STATE!!!!
Hang in there, I think about you often.

PORTER REPORTER said...

I just caught myself up on your blog over the winter. I had know idea Matt had surgery in December. I love his poem. He's written 3 books?? Shayla is still working on her book as well. I'll have her email it to Matt. We just had baby #6. I can't believe you are having a GIRL!! So fun. Darla Driggs

Katie said...

I shudder to think which of my words I will have to eat. . .

I really struggled with how to tell people about my family. All the sudden, 'how many children do you have?' became a really tricky question. I decided to err on the side of telling people about Bridgette. I try to do it in an upbeat way and most people are okay with it. I have had some neat experiences that way. And I figure, if somebody is really uncomfortable and doesn't know what to say, it's good practice for them. Maybe they will go home and think about what they should have said and be more comfortable the next time they meet someone who has something difficult in their life. It won't be long before they do.

You are not a 'poor me' kind of person. You have a lot to say to inspire and uplift those around you. Tell your story!

Anonymous said...

I'm impressed to learn about Matt's writing. GO, MATT! I don't have any tumors, but I have dealt with anxiety and depression all my life. I could empathize with Matt about the anxiety he feels. I used to agonize over little things - acting as if they were the end of the world, and it truly felt like that. I've never been anti-medicine, and I can say that I'm finally learning to see what life might be like outside of the anxiety/depression as I have gotten a doctor's help with recent issues. Haven't found the perfect solution yet, but the relief is wonderful.

We live in a fallen world. Things go wrong every day. Our bodies are not perfect. Things go awry in them. Just as you have sought help for him in his cancer, you have sought help for him in his brain chemistry. I know many people are overmedicating and are looking at things as something they are not, but if you know your child truly needs help, you shouldn't feel bad about seeking it in the form of medication. If he had high blood pressure, you would do something. If he needed glasses, you would get them for him. If you know he has damage in that area, you are right to help him by supplementing for what he lacks.

I hope this has come across well; I mean it well. As one who has felt similarly, I can't stand the thought of not getting him relief when I know how consuming it can be.

JD