Thursday, April 30, 2009

I am borrowing this from my friend Heidi Jessica's site. Heidi is a superwoman, leading the way for Childhood Cancer Awareness. Her beautiful daughter Jessica died three days after her 17th birthday, June 9th, 2007.  Jessica and Hannah share the same birthday. If you have a moment, please go and visit Heidi's Brain Tumor Wall of Courage. Heidi is an amazing designer, and it's definitely worth taking a look at. It's incredible and Hannah's picture is included too!

Find A Cure!


Please visit this link for very important information regarding the National Childhood Brain Tumor Prevention Network Act of 2009, and what YOU can do to help!!

I'm Wearing Gray For The Kids! (And The Adults!) :)First off, last night I added new designs to the Wall of Courage store. I had a TON of requests for "Adult" designs, so I created a new section for Adults (Father, Mother, Uncle, Aunt, Grandmother/Father, etc.). While I have listed on the Kids' designs, I used on the adult designs. I figure maybe we can plaster the whole world in gray for the month of May. Well, not literally ...

I also added "I HAD a brain tumor" to the "myself" designs (used to be only "I HAVE a brain tumor" and well ... thankfully there are many warriors out there who can use the past tense!) :)

Here's the link again ...

Also, for those interested, proceeds from the sale of these products will be distributed among the following:

Jessica C. Randall Memorial Scholarship Fund
Children's Brain Tumor Foundation (

The Brain Candy Project ( -- The foundation that ^Cameron^ and his father started to help other families dealing with childhood brain tumors.)

Jacob's Smiles ( -- site not functional yet, but you can read up on Jacob's smiles on his Caringbridge.)

and, pending: Aimee's Army ( -- ^Aimee^ is the sweet young girl whose "ribbon kids" design was the inspiration for the May Gear.)

Thanks for checking in with us, and let us know how you like Heidi's designs. I hope to see you out and about in gray during the month of May!

ps to the Griffins, I wanted to email after the Sox swept the Yanks right out of town, but we haven't recovered yet :)


Saturday, April 25, 2009

Another week has flown by already, and we were so busy.
Both Colby and Hannah are playing lacrosse this season, on two different teams now. Although Hannah was a bit resistant at first, once she gets out there, she does well and has a good time. It's a 3rd and 4th grade team, and she fits right in. It's amazing, although we can tell by the way she runs and her delayed reaction time, I bet no one else can tell that she had a brain tumor. It's great to see her out there.

Monday we went to the endocrinologist for Hannah's 6 month checkup. Among other things, they monitor 2 things for Hannah, her growth rate and her thyroid production. Both were compromised by the radiation she received to her head and spine. She is growing at about 1/2 the rate of a normal kid her age. Most of the growth is coming from her legs, and not her spine. That's not a surprise though, even proton radiation won't help with that and we knew that. They are still evaluating her growth through measurements and a bone age scan before they determine if any growth hormones are necessary. The problem with growth hormones for a brain tumor patient is that they can cause the tumor to come back. We want to avoid the hormones if possible. We know Hannah will be short, but we just want to be sure she isn't abnormally short so that other issues don't arise. She is also still complaining of foot pain. It's not as significant as previously, but we suspect her bone density may still be low. The doctor ordered another dexa scan to check her bone density (although it most likely won't show a big difference after only 6 months.) Her blood results will also show us her vitamin D levels.

I was supposed to have her blood drawn before the appointment, but I had forgotten since the last appointment 6 months ago. A blood draw is the only way they can monitor her thyroid production for sure, along with a clinical analysis of any symptoms (fatigue, early puberty, headaches, etc, etc.) I am finding that endocrinology is as complicated as oncology, if not more so. There are so many factors that go into it, and not everything is clear and straight forward. We really like our doctor, so we're trusting that he is monitoring her carefully.

Tuesday we headed in for her routine checkup to brain tumor clinic. She has gained weight since her last visit, and all looked good. We will begin to decrease her medicines in the next month, little by little since she has been doing well regarding the stomach pain and nausea. She has now graduated to 4 month MRI's instead of every 3 months, so her next one will be in June. She has requested that it not be on her birthday so I think I can arrange that. The doctor noticed her retainer, and asked when she will be getting braces. He wants to wait at least another 2 years, because the braces will interfere with the reading of the MRI's due to the original tumor location. They need to be able to view the scans for even the most minute changes or issues.

After her appointment, we headed over to have her blood drawn. She was a bit skeptical because we went to a new blood draw lab that we have never been to before. Out walks an older man, pretty unusual for a pediatric blood drawing lab. Hannah took one look at him and said "he doesn't know how to draw my blood." She started to get upset, so the nurse (Cool Ed he called himself) began to talk to her. As he tied the band around her arm, he took her finger and showed her how to feel the vein, to find a good one to draw from. She thought this was amazing, and calmed down right then and there. She still wasn't happy about the needle stick, but I have never had a nurse like this man calm her down so quickly. Can't judge a book by it's cover-isn't that the truth.

To round out our week, Colby had 5 teeth extracted by an oral surgeon on Thursday afternoon. We were told they would pull them, but some were impacted. He had to cut her gums in some places, and she has stitches in her mouth. I just wasn't prepared for it to be that involved, and neither was she. Four of the teeth were permanent teeth, and one baby tooth. She continued to bleed all night long. She was miserable. By Friday I was worried that she was dehydrated since she wouldn't eat or drink, or go to the bathroom. She was so weak that she couldn't walk by herself. She was close to a trip to the hospital for hydration, but we managed to get some fluids into her. She was still bleeding last night, but this morning seems to have turned the corner. She is eating small soft foods and drinking again and feels so much better. At one point, Colby was in the bathroom crying trying to get her medicine down, and Hannah was right behind us crying too. Hannah was a good nurse until she got frustrated because Colby was a bit grouchy, and she just threw the paper towels at her, then she was done with that job.

We're enjoying the nice weekend weather here, hope you are too!


Saturday, April 17, 2009

Another weekend is here already, time is just flying by. 
It is only 43 days until our Relay for Life! I keep thinking we have so much time to finish everything we have to do and just like everything else, it's quickly creeping up on us!

Thank you to all of you that have already ordered your luminaries. We have 51 luminaries to date, which is great! Thank you so much for your support. We are beginning to decorate them this weekend, and the girls are looking forward to it. Hannah has been asking when we could start (since day 1). There is still time, and we would love to surpass our luminaries from last year, which was 130 total! Here is our information again, if you would like to join the fun:

Help us shed light on the fight…

Here is what we need if you are purchasing a bag:
  1. Your name and address
  2. Who is to be honored on the bag (in memorial or in honor of)
  3. Any photos or artwork you would like included on the bag
  4. Anything additionally you would like us to include on your bag
  5. Your check made out to American Cancer Society-bags are $10 each, send to us at the address listed on the blog page. You can also pay via paypal, email address is
Time to sign off, we still have a busy weekend ahead. Tomorrow we have doctor's appointment, possible Hofstra softball game and Hannah has a friend sleeping over. Sunday the girls both have lacrosse games in two places far away....more on that tomorrow!


Monday, April 13, 2009

Wow, this is probably the longest I have ever gone without updating Hannah's site. We've been very busy since our last update and our Hofstra game.

First of all, I hope everyone had a blessed and peaceful Easter. As we were standing in the vestibule at church on Sunday (yes, because we didn't show up early enough to get a seat) I was trying to remember where we were for Easter last year. I do remember 2 years ago on Easter. We were in Boston because Hannah was still getting radiation my parents brought Colby up for the weekend and we were all together. Hannah was still in her wheelchair, could not walk by herself. She had lost her hair, and it was new to us, we were working through the new phase. At that point, I still couldn't make it through church without crying. So we all sat there while I tried not to look like a sobbing fool in church. I was so mad and so sad all at once at God for letting this happen to Hannah.

I have, of course, since reconciled those feelings. God didn't make Hannah sick, and I don't believe he can also reach down and ceremoniously heal her. There is some kind of a plan, and somehow we all fit into that. We can pray and pray for God to "change" things, but I don't know if I believe that prayer can actually "change" his overall plan. I hope that Hannah has been chosen as one of those children that will live on to help encourage other children to fight, to give others hope.

Hannah has been doing well. We were on spring break this past week, and today. During her last week of school, she was struggling to stay in school each day, and I usually got a call from the nurse's office from her. We had been working on a few things to help her stay there, I finally bribed her with a hamster. At first the deal was that if she stayed in school for 10 days straight she could get a hamster. I quickly reconfigured that deal to say if she stayed in until Relay for Life, which is at the end of May, she could get one. She wants a hamster so badly and she constantly reminding me of the deal.

She has felt very good last week, but then again, they have been out of school. We have been working with a few doctors to help Hannah work out some of the issues she is experiencing, both physically and emotionally. One of the things that has come up has been Hannah's problems with school. She doesn't like school. I think it's mentally a big challenge for her to keep up with everything. But, she also has been having emotional issues with school too. All in all, she just doesn't want to be there. We think her stomach issues are a combination of neurological and emotional problems. The medicine is helping her, so she is not throwing up anymore, but she is still experiencing real stomach pain. What is causing that pain is something we're working on. We go to school through the end of June, so we have about 2 1/2 more months left.

The first half of our spring break was filled with appointments, but the second half we headed to Washington DC. Dave had done extensive research, and had about 150 places he wanted to see. The first day there, we stayed out for 12 hours! Yes, we were exhausted. I think we forgot how quickly Hannah tires. We spent a good part of the first day carrying her. The second day we commandered a wheelchair, which made our day SO much easier. I know the kids' feet hurt because my feet hurt too (and my legs and back and head.) By day 3, we had the pace down and there was much less whining all around. Hannah said her favorite was the National Zoo, I think Colby's was the Ford's Theatre where Lincoln was shot, and mine was probably Arlington National cemetary. I think Dave was on a high the whole time, he liked it all. We stayed at Brooks and Rebecca's condo (Brooks is my cousin.) It was perfect, and we were so grateful to them. Brooks also got us into the Capitol for a private tour, which was incredible. I could write and write about it, we did have a good time. Of course I have a million photos, here are a few.

I better sign off for now. If you have made it this far...CONGRATULATIONS!! I won't wait this long before my next update, so that your eyes aren't crossed after reading. Thanks for handing in there with us...lots more to come on our Relay!