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

Wednesday, February 17, 2010

The girls had winter break from school this week, can't believe it's over already. Nothing really exciting happening, we are in town while dreaming of the Bahamas. We took a drive over to the south side this week to Montauk to see the seals. I tried to prepare the girls in case we didn't see any so it wasn't a complete let down. It was a short hike to get to the ocean, probably 20 minutes. Hannah only fell once so it was a good day. We saw seals immediately upon entering the beach. It was so cool. There weren't a lot, only 4, but so much fun to watch. Look at this cutie. It was pretty cold when we got down to the water, we stayed for about 30 minutes.

Hannah also had a sleepover last night (which is why I'm so tired today.) Four girls over, finally asleep about 12:15 in the morning, so not that bad. We made our own pizzas, made cut and tie pillows, played lots of hide-and-seek and hamster games, and watched a movie. It was a busy night, but so much laughing and so much fun.

So that was the fun stuff. Now for the other stuff. Hannah's mole biopsy came back as dysplastic nevus (atypical mole.) It could be something or it could be nothing. Back to research mode. What I know so far is that it could be a gene mutation (called Gorlin's syndrome) which causes both atypical moles that could eventually be cancer AND medulloblastoma, or it could be a secondary reaction as a result of the radiation she received, or it could be something unrelated. We have a clinic appointment in a couple weeks, and I'll discuss it with her oncologist. We also have a follow up appointment with her dermatologist-one more doctor to add to the mix-in six weeks to ensure she got the entire mole out and there is no repigmentation of the area.

If I had to make a guess, I would guess option #2, secondary issues resulting from the spinal radiation. The mole was in the field of radiation on her back. Will keep you informed as we progress through this one!

Enjoy your weekend,

♥Kim

Tuesday, February 9, 2010

We are at home today, snow day from school, yippee! We have a delay tomorrow too, so not bad. We probably only got 8 inches or so. Hannah wasn't too excited when I told her we were going to the dermatologist this morning to get a mole on her back examined while everyone else was at home playing in the snow. Last time at clinic, her neurologist saw it and suggested we go get it looked at. Of course, the doctor today wanted to take it off and biopsy it. I hadn't prepared her for that. There were some tears because the shot of lidocaine really hurts, but she didn't feel anything after that. Now we wait. I'm not even going to get into the radiation induced mole issue, not going there unless we have to.

Hannah's next clinic visit is scheduled for March 16th. She is still struggling with stomach issues. I haven't talked too much about it here, but she is out of school on average 1 day a week. It's not typically all day, but she will come home from school sometime during the day. For the last couple of weeks it's been on Fridays. It's almost like she is just too tired from the long week, and she struggles to make it through. She comes home and sleeps for up to 5 hours, gets up and feels much better. Then she eats, has more energy and stomach feels much better. So, what is that? Last week she came home on Friday from school, slept for 3 hours, I woke her up at 4 because we had something to do, and by later that night she was good enough to play lacrosse! I'm planning on talking to her oncology group again in March to see their thoughts and ideas. If any of you reading this have any ideas, I'd be open to hearing them!

Speaking of something to do, Hannah and I went to the Coaches versus Cancer game here at our high school last week as representatives for the American Cancer Society (filling in for our friend from the ACS that couldn't be there.) Hannah had a good time getting people to sign petitions, hanging up the donation signs and getting people to play the games at our table. She also went out with me to give the speech in front of the crowd and present the coaches with their certificates of appreciation. We had fun! American Cancer Society runs this event all over the country in conjunction with coaches from the National Association of Basketball Coaches to raise awareness and funds.

We were then off to her lacrosse game (at 9 pm). She loves to play, and we love to watch her. We're not sure how much longer she will be able to play. Once the girls get older, the competition gets stronger, and the girls get faster. She won't be able to keep up and it will get too dangerous for her to be out there with the fast movement, pushing, shoving and flying hard lacrosse balls. She runs hunched over like a little old lady. Her upper body is always going forward a bit quicker than her feet can keep up with, so we're always afraid that she is going to do a face plant at any minute (which she did a couple games ago.) She really enjoys it now, more than last year. She doesn't usually get the ball during a game, but feels like she is more a part of the action this year. At one point during the game, after a penalty the ref handed her the ball, she took a couple steps a fired a quick pass right to a teammate. Dave and I looked at each other like "did you SEE that?" We were both surprised and laughing! The day after the games she always has some type of soreness or pulled muscle. It's because her body isn't conditioned like a normal 10 year old. Sometimes it's a twisted ankle, or a With the chemo, radiation and inactivity over the past 3 years, she is still behind. But, she's getting better, little by little.

♥Kim

Tuesday, February 2, 2010

I found this article recently and wanted to share it, I found it very interesting. The dates are now outdated. It's both interesting and uplifting. Enjoy.

♥Kim

The Ravens' (very) secret weapon

You're 14 years old. You've got cancer. And your team asks for your help.

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By Rick Reilly
ESPN The Magazine
Archive

Courtesy Jamie CostelloRay Rice's 83-yard scamper? Matthew Costello made the call.

Hey, Baltimore fans, this might make you spit out your crab cakes.

You realize who's been calling the first play of Ravens' games lately? Like the one that went for an 83-yard touchdown against the Patriots?

If you said head coach John Harbaugh, you'd be wrong.

Offensive coordinator Cam Cameron? Wrong again.

QB Joe Flacco? Strike three.

The guy who's been calling the first play lately isn't a guy at all. It's a 14-year-old Baltimore kid. His name is Matthew Costello, he's got an inoperable brain tumor and he's on a lucky streak.

"You gotta meet this kid," says Cameron.

This all started when Matt, a third baseman and pitcher for Loyola Blakefield Middle School, was hit in the eye with a pitch that tipped off his bat. He ended up with double vision. A few dozen doctors later, they found a malignant tumor. Now his days are mostly going to chemo sessions and wondering if he's ever going to get back to playing any of the three sports he loves.

Cameron's son, Danny -- Matthew's classmate -- told his dad about him, how he lives for the Ravens. Next thing you know, Cam Cameron was driving through the biggest snowstorm to hit Baltimore in years -- getting stuck three times -- with a Flacco-signed football, a signed hat and glad tidings for Matthew.

Why? Maybe because Cameron survived serious melanoma cancer at age 28.

Matthew's dad is a morning news anchor at WMAR in Baltimore and he was on the air, live, when his phone spit out this befuddling text from his wife, Donna: Cam Cameron is on his way.

"I'm like, 'What?'" Jamie Costello recalls. "'In a driving snowstorm?'"

Yep. Cameron talked with Matt for 20 minutes, and then, as he was leaving, turned and said, "Hey, Matthew, whaddya wanna call for our first play Sunday?"

Mouth open. Eyes not blinking.

Since the chemo took his brown hair and a whole mess of his white blood cells, he only leaves the house to go to the hospital. Instead, he listens to comedy on his MP3 player. It's a crazy thing to see a kid, fighting for his life, constantly laughing.

"Seriously," Cameron said.

Since Matt played QB for the school team, he knew when it was time to audible. "Play-action pass," he said. "Be cool if you could get it to Todd Heap."

Sure enough, first snap against the Chicago Bears in Week 15 -- with the Ravens trying to make the playoffs -- Flacco fakes the handoff and drops back to pass. Only he bounces the ball off the turf for an incomplete pass. But later in that series Cameron looks at his play sheet. Scrawled on the side, he's writtenMatthew Costello. So he calls Matt's play again and it goes for a 14-yard touchdown to Heap, the tight end. Ravens win, 31-7.

End of story, right? Except, three weeks later, the night before the Ravens' playoff game with New England, Cameron calls again.

"OK, Matt, whaddya wanna do Sunday?"

"Run the ball," pronounced Matt. "Ray Rice. He's hot."

So, first play against the Patriots, Flacco hands to Rice. There's a hole and Rice is through it like he's being chased by a bear.

"And I'm thinking to myself, 'Don't tell me this is going to go all the way,'" Cameron remembers. It does -- 83 yards, untouched, for a touchdown. "The whole way, I'm thinking of Matthew," Cameron says.

Nobody knows any of this except Cameron's and Matt's families. Jamie Costello is in the press box, screaming like his underwear is on fire. He hadn't told anybody that his teenage son was the new brains behind the Ravens' offense, so every single person gives him the stink eye. There's no cheering in the press box, dude. Unless you're cheering for a kid who's trying to survive.

Ravens win, 33-14.

Says Cameron: "I just looked to the sky and said, 'Maybe there's something to this kid!'"

Oh, there's definitely something to this kid. Since the chemo took his brown hair (the family calls him "Barkley" now) and a whole mess of his white blood cells, he only leaves the house to go to the hospital. Instead, he listens to comedy on his MP3 player. It's a crazy thing to see a kid, fighting for his life, constantly laughing.

This month sometime, Matthew will gulp hard and find out if his tumor has shrunk enough to begin radiation. If not, it's back to the chemo, Frank Caliendo going through his brain, prayers going through everybody else's.

Cameron knows a little how the kid feels. Earlier this fall, he had another cancer scare -- this one prostate -- but a battery of tests turned up nothing.

"My three boys and I talk about Matthew all the time," he says. "Anytime we're going through something a little tough, we say, 'How do you think Matthew's doing?'"

As for Matthew's dad, he can't find the words. "I used to worship Brooks Robinson," Jamie says. "But Cam Cameron is higher than that now for me."

The Ravens play Super Bowl-favorite Indianapolis on Saturday, on the road. Cam is planning the Matthew call for Friday night.

So, Matthew, whaddya wanna do?

"I haven't decided yet," he says. Smart. The Colts could be reading.

Not that he doesn't have a game plan.

"When I get better, I wanna do what Coach Cam did for me. I wanna make some kid feel the way Coach made me feel."

Funny, right? How a kid with double vision can see so clearly?

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