Wednesday, September 24, 2008

Kevin's Shunt

First off We didn't learn much from Tuesday appointment other than Kevin needs to eat!!! Kevin's Dr. wouldn't give me a definite date on releasing him as he is trying to work out some issues with Kevin's medicine. But one of the PA's told me more than likely it will be sometime in 2 weeks as long as Kevin's bone marrow starts kicking in building his immune system up. When I started asking questions the doctor started backing out of the room, I knew he didn't have the answers yet. So we are in a wait and see holding pattern. I do want Kevin's line pulled before we go home. It is just one more place for him to get an infection and I certainly will not allow him to go to school if it is still in when we return. The double luman has been a source of half of his infections through this whole thing.

When Kevin had the tumor in his head, it had been there so long and had grown large enough that it caused damage to his brain to the point where the fluid we all produce in our brains couldn't drain properly in his. So after his emergency surgery to relieve the pressure that had gotten dangerously high then 24 hours later he had his tumor removed in another surgery, a week later last February Kevin had to go through another brain surgery to have a shunt placed permanently in his head. The shunt is the bump on top of his head that everyone can see since he has no hair. From the shunt down to his stomach is tubing that runs under his skin which the fluid drains into his stomach. The shunt surgery was worse than the other brain surgery to remove the tumor. Kevin had more issues getting adjusted to the shunt, but now he seems pretty adjusted except for one big thing. He can't ride on rollar coasters or any amusement park ride for the most part as long as he has the shunt. It can kill him. About 2 years ago we took Kevin and Scotty to Cedar Point for the first time. Kevin was just big enough for the Raptor Ride. He loved it, he road it several times that day. Kevin surprisingly has a dare devil streak in him.

Yesterday as we were waiting to meet with Kevin's doctor, Kevin started talking about not being able to go on rollarcoasters. He was pretty upset about it. He was a little mad at me for not getting him an MRI sooner when he first started showing signs so that the tumor wouldn't have permanently damaged his brain and he wouldn't have to have a shunt. He also wanted me to promise no one else in the family would go on rollarcoasters since he couldn't. He was upset that whenever he goes to the boardwalk or any amusement park that all he can do now is win prizes.

I also caught him staring at himself in the mirror. I am pretty sure Kevin hates his shunt, he is just such a good kid he tries not to show it.

But this brings up another conflict. Kevin qualifies for Make a Wish since he has fought a life threatening illness. Kevin keeps picking amusement parks for his trip. It really hit me hard that going to one of those places for his wish might not be the best thing for him emotionally until he has peace within himself about his new limitations. One of the places on his list was Disney World, which I remember there being alot of rides as the highlights. The other plan was to go to California and go to Lego Land, Disney Land and San Diego Wild Park. Even though he has his wish submitted he still is uncertain about his final choice but he only had until November to change it.

So I need idea's from all of you. Kevin loves fish (him and Eric have aquariums at Eric's house), he wants to be a paleontologist when he grows up and loves being around other people. We have taken Kevin to the Smithsonian since he could walk and he seems to enjoy anyplace with a story. So please send us any vacation, destination ideas that stay away from amusement park ride type stuff. We need any and all ideas you might have. You can email (michigan_herrs at yahoo.com) them to me or post them in the comment space.

Sarah, a little 3 year old St. Jude patient is in need of lots of prayers. She has so many tumors growing inside her little head they just did an operation to put a shunt in which she seems to be struggling to adjust to. Sarah has been given until Christmas to live. Please say a prayer for her parents. They are doing a great job dealing with this nightmare of a situation they have been dealt but they are losing their daughter before their very eyes. No child should ever have to go through what these children go through. Sarah also has two older brothers who are having to go through a very grown up life situation (they are near Kevin and Scotty's age). If you can, please leave Sarah's family a short message of support. As a mom with a son with cancer I watch their situation and know that this can happen to any one of us. This just makes me sick that these kids and parents go through this.

Thank you for all of the love and support. You all have really blessed our lives.

Rachel

6 comments:

terri braswell said...

Hi Rachel and Kevin. It is a hurry up and wait situation . Just go with the flow and try to enjoy the last few weeks in memphis. Eating is still an issue with Heather but we are working on it.

I will try to brainstorm with vacation ideas. What about goin to the West coast and doing San Francisco, the aquarium is great and Alcatraz. I will keep thinking. Why does he only have until Nov? They told us last night that she can change her mind right up until we have our tickets in hand. What about a Disney Cruise?

We miss seeing you and really hope that we get to see ya'll again. Tell Kevin and Jake Heather and I said hi. Hang in there, it will go fast. Pack pack pack. Let me tell you how fun that is. Hahahaha.

Have a good weekend and hope Kevin EATS EATS EATS. Much love, Terri and Heather

Laura said...

Rachel..tell Kevin I promise not to go on another roller coaster for the rest of my life...(id puke anyway!!).. What about Sea World in Florida? I thought that was his trip? I'll brainstorm some ideas with the other teachers..they are always creative. Give Kevin my love..I can't wait to talk to him about my news :-) We will all be praying for Sarah. I'll also be praying too that Kevin starts eating and gets fattened up!
Laura

Anonymous said...

Rachel,
I am surprised about the shunt and roller coasters. Trent has a shunt and we went to Disney and rode many rides and roller coasters and he didn't have any problems, and the dr. never said he shouldn't. Hmm...I guess I better get a second opinion. That's scary!
For an idea for a place to go..Atlanta GA was a lot of fun. It has one of the best aquariums in the US, Coca Cola World, CNN (studio tours), and cute little zoo with panda bears. The boys had a great time there.
Just a suggestion. Hope you are back home and doing well soon. Trent finished treatment in Feb. and if you didn't know him with cancer, you wouldn't know right now that he ever had it and went through what he did...and I am confident that this will be true for Kevin too! Good Luck and well wishes to all of you!
Paulette Keatley

tae said...

Rachel,

Sounds like you have so much going on in your mind. At least some of the medical responsibilities have lessened. We will be praying that Kevin's weight begins to pick up (or at least stabilize) and that he doesn't face any more inpatient stays. Does Kevin do alright with the Ensure and Boost drinks?

I can certainly sympathize with the financial strain you all are facing right now. We're still feeling the pinch as I'm not back at work yet. We felt that it would be better to have me wait and see how well Ethan is able to tolerate the days at school. Anyways, I've only got a four-hour window to work, as Sean's preschool begins a few hours after I put Ethan on his bus. Thankfully, we've managed to keep our house throughout all this and only had the water shut off once while Will was in Memphis with us for the second round of chemo. Not too bad when you look at the big picture.

I'm trying to arrange for a girls' day out with manicures, a coffee shop stop, a movie, lunch out, etc. with a few of my friends to let loose and be completely selfish for a few hours. I sure wish you could come, too. Hopefully when you return home and the dust settles a little bit, your friends will scoop you up and take you out for a nice day of pampering.

I had an idea for you about possible Make a Wish options. Perhaps Kevin would like to venture to Hawaii and take in some of what they have to offer there. The volcano would be super-cool to watch as it oozes lava. I'm not sure what they have in terms of fossil digs and all, but it's got to be chock full of ancient buried treasures. You could go into one of the submarines or glass bottom boats and take a good up-close look at the marine life.

Will and I lived there for a few years before Ethan was born and know a little about where to go and what to do without it feeling like a cheesy tourist set-up. If you think Kevin might be interested, let us know and we can do some more research for you to see what sort of scientific excursions he can take part in and off-the-beaten-path activities to do.

I truly hope that the next few weeks go smoothly for you all and that the journey home is nothing short of joyous. Home will be the best medicine after all you guys have been through. Take everything else in stride and let the unimportant things remain just that--unimportant.

I'll stop rambling on now. Big hugs to you all!

Your friends,

Tae, Will, Ethan and Sean :)

kelley dietrich said...

Rachel,

Discovery Cove in Orlando is wonderful!! Swimming with the dolphins and sting rays and even snorkeling over a reef. Our whole family enjoyed it! What address should I send the card from Kevin's class? you can email it to me if you would like dietrichck@sbcglobal.net.

Thanks,

Kelley Dietrich

Milissa said...

Hi, Rachel. I was catching up on some of your blog posts before Kevin's welcome home party on Saturday but didn't get the chance to talk to you about this at the party since we had to dash off to a soccer game.

Last year we went to San Diego over the winter school break, and I would definitely recommend a few things there that I think Kevin will love (my boys did!) and will also keep the roller coaster temptation at bay. First, there is Sea World. The only rides they have that are coaster-like are a couple of water rides, but when we went it was way too cold to get on them anyhow. But there are other ride experiences that would be suitable, plus there is a dolphin interaction program that I'm sure Kevin would love.

I can also recommend the San Diego Wild Animal Kingdom. It's part of the San Diego zoo but is located about 40 minutes north of the zoo. We loved that park so much, even better than the zoo!

And, lastly, in the downtown area there is the USS Midway Battleship museum. They have a walking audio tour that both of my kids really enjoyed. (And I loved it, too, because my dad served in the Navy during World War II as a radio-man on a troop carrier, so I got to see what a radio room looked like!)

Hope those suggestions help!

Milissa
Mom to Race and Peyton P. from the neighborhood!