Wednesday, June 23, 2009

Time to help...Call to action!

You are all familiar with Hannah's Cans for Cancer program. Now that some of our own personal dates are over (Hannah's BD, Relay, and school-almost) it's time to focus on some new fundraising ideas that have been brewing.

I have not given an update on Cans for Cancer in a while. Briefly, to date, we have raised over $14,000! We are so excited about all of the children and their families we have been able to help. We have donated over $13,000 of that money raised, so our fund balance is currently under $1,000. Hannah has been talking about some other things she would like to do to raise money. Hannah ALWAYS talks about doing things to raise money-mostly focused around baking.

Some of the ideas we have been throwing around are:
  • bake sale
  • car wash
  • "honk" for Hannah-Pam's idea
  • basketball 3 on 3 tourney
  • online fundraisers

We have also been working on organizing Cans for Cancer as a non-profit 501(c)3 corporation. This process isn't difficult, just time consuming. We would like to get all of our things in order to be able to do business officially as "Hannah's Cans for Cancer."


Through all of my web site connections to other kids with cancer, I have come across the most adorable little girl-Sarah- and her family. You can read Sarah's story HERE. This little girl has Familial Mediterranean Fever a rare incurable life threatening disease. I was just drawn to Sarah and her family, and read all of their blog updates. Sarah has suffered so much in her young age. Her family lives in upstate New York, in a very remote area. Neighbors and supporters are few and far between. Their only fundraiser organized by friends and family brought in minimal amounts.

Sarah's health care costs are numerous, and are rising. Her father's wages are already garnished, so the pay he does bring home is not nearly enough to cover her medical costs. Recently, the family was struggling to even buy the simple necessities, including Tylenol for Sarah. Sarah has not been able to go to the doctor lately, again due to costs. My heart really goes out to them. Cancer is not the only thing-by far-that our kids suffer with. No one deserves or should ever be in this position.

Here is where the CALL FOR HELP comes in. I have decided to put together an online fundraiser for Sarah and her family through ebay. I have been scouring my house for things I can sell on ebay to bring in money for their family. Some of my things are new, some are not, but ebay is good for both. This is like an online yard sale!

I would like to ask that you all do the same-look through things you would like to offer up for sale. Possibly you have season tickets to a Mets/Yankees or Red Sox (oh my) game that you donate to be listed. Perhaps you have other things like:
  • clothes
  • games
  • artwork
  • collectibles
  • your house...just kidding, you know you can sell anything on ebay these days

Do you sell something for a living like Mary Kay, Isagenix, Arbonne, or ??? Everyone surely has something they can donate to this very worthy cause. Can your company help, will they match any funds donated?

Here is how it will work:
  1. Please look around your house and collect the items you would like to donate for the ebay sale
  2. You may list the item(s) yourself on ebay, or send me a photo(s) and a description and I would be happy to list them for you. If you would like me to list something, please email me directly and I will provide you with a list of description items I need for the ebay listing.
  3. Donate monies raised to Sarah and her family. This can be done directly via paypal at NO COST. Old fashioned checks are always good too.
There are a few other details such as how we get the money to the family, when will our ebay sales will start and end, etc. Since this post is very long already, I will be posting again very soon with some more of the details. But for now...go look around your house...PLEASE!

That's it! I know the economy is still not great for many of us, but I am hoping that we all can come together to help a family in true need. We may not be able to give cash (but if you can, that would be GREAT too!) but, if you can find just a few items around your house, even ONE item in your home that could be donated to help another family, that is our purpose. Please look around now!

The ebay auction will be starting within 2-3 weeks (hopefully) so let's get started! Please email me with any questions. Sarah's mom Kim is fully aware of the fundraiser but I'm not sure if she is still online again-not enough money to keep their online service, so please contact me instead.

Give from your house, Give from your heart...LET'S HELP SARAH!


Saturday, June 20, 2009

Happy Father's Day

Especially to my dad and my husband, two of the best out there. Love you!

We want to share a video that Hannah has been working on with her dad for a very long time. We finally got it finished and loaded on YouTube..enjoy!


Tuesday, June 16, 2009

NED, no evidence of disease, MRI's are clear.

I think the mental exhaustion is now hitting full force and I'm going to bed at 9:30pm, it's a record! Thanks for all your thoughts and prayers,


Monday, June 15, 2009

Very long day today, but not too bad. We took off about 8:30am and had her dexa scan first. The worst thing about it was trying to find the place. Did I already tell you the story? Last Thursday, Hannah and I drove in 2 hours to get to the new place for her pediatric dexa scan. We went to the wrong place, then they sent us somewhere, then somewhere else, etc. etc. By the time I finally reached her endocrinologist by phone (after having to page the doctor because it's IMPOSSIBLE to get through to him) and we found the right place, they already shut down the machines and the techs had gone home. I was so frustrated. We turned around and drove right back home. What a waste of time.

So, we rescheduled for today, around her orthopedist appointment and 4 MRI's. Thank goodness they had a time for us this morning. I felt it was important that we meet with the orthopedist today because of all the foot pain she has been having. Well, got a call on Friday that the orthopedist was canceling! First they told me he was scheduled for surgery all day. When I told them that he could still see me for 15 minutes, they came back and told me he had a death in the family. I was so mad because I had scheduled everything else around this doctor, who is very hard to get into. They were supposed to call me back today, but that didn't happen.

So the dexa scan-the results weren't shocking, almost exactly the same result as previously. She has low bone density, no surprise. I have to wait to analyze the results with her endo doc.

We arrived for her MRI's at 2:00pm, to be told that they were an hour behind. They called us at home. Umm, we live 2 hours away and left at 8:30 this morning. Anyway, we got started after 3, it was long, it was hard for Hannah, there a lot of crying a wiggling. We didn't get the results because everyone had gone home by the time we were done.

Because of the delay, the waiting room was packed. It was hard-there was an Orthodox Jewish family there with a son who was having an emergency MRI. He was 2 and stopped walking a few days ago, Just won't walk. The mom had lots of questions for me about different things like CRP, WBC, etc. that I didn't want to answer. He may have a brain tumor. It was hard to see the little boy come out of MRI limp from anesthesia, and the mom rocking him and just break down crying. I just tried to assure her, it would be ok. No matter what, it would be ok.

There were many other young kids there waiting, but one that we knew from clinic. I never knew his diagnosis, but found out today he had an optic glioma (eye tumor). He has the same oncologist as Hannah. After chemo and surgery to remove the glioma, they found multiple tumors down his spine. He had surgery to remove as much as possible. He was there today because his eye had started to turn in again, not a good sign.

So, we won't know the results until tomorrow, which is a first for me. In for a long night I think. As we left I was checking out the monitor, seeing a big tumor in the back of her head. Good thing that MRI reading is not my thing. Couldn't really ever read those stupid things. After one of Hannah's first post chemo MRI's I popped the disk into my computer and called Dave to tell him she had a tumor. I just can't read them!

Here's to good news tomorrow...I'll leave you with a few more pictures, they are always more fun than text, don't you think! Rafting on Hannah's birthday, Hannah's penguin cake, Grandma and Grandpa, Chester, Hannah's birthday pool party, etc.! Last but not least, here is Tod, the picture of how I feel!!!!!


Sunday, June 14, 2009

Something just isn't right. "They" say the survival rate for medulloblastoma is about 80%.

Last September, just 9 months ago, the girls and I went into the city to meet with the families of 3 other kids with medullo. We met with Jacob's mom and his little brother. Jacob wasn't feeling well enough to come. We also met with Coleman and his family from Iowa, and Zach and his mom from Minnesota. Three boys and one girl (Hannah) with the same brain tumor.

Just 9 months later, those three boys are dead. How can that be? Coleman, then Jacob, then Zach, just a few days ago. It's unbelievable, scary, heartbreaking. It's just wrong.

Sometimes just too much to comprehend. Hannah has her dexa scan tomorrow (did I write that we missed it last week because we were in the wrong place???). She also has 4 MRI's-head and full spine. I'm not that nervous right at this moment, because I really try to block it out.

I know how to calculate 80%, and one out of four isn't it!


Tuesday, June 9, 2009

Sorry for not posting sooner, time just gets away from me. Grandma and Grandpa were here for Hannah's birthday, which was great. We had a lot of fun, even though it was very short!

Speaking of short, this is going to be a very short update because I'm tired and I have poison ivy all over my body which is spreading by the minute. It's either that, or a reaction to the new lyme meds I started today (maybe it's both)

Hannah had a great birthday, she is now double digits (10 years old)

She is having a sleepover birthday party this Friday, fun fun!

Tomorrow we go for a pediatric dexa scan at a place near the hospital, so hopefully these results will be more reliable.

This Monday, Hannah has 4 MRI's. She is having her brain MRI as well as her 3 spinal MRI's. They don't usually do them all at one time, it's just so very long but we will.

This Monday Hannah also has her meeting with the peds orthopedist. I'm hoping he can provide some insight on the foot pain.

We've been working on sending out all of our luminary pictures to those that ordered them from us. Yours is coming soon if you haven't seen it already!

Last but not least, Chester is doing well (the hamster.)

Will update more soon, of course with pictures!


Tuesday, June 2, 2009

I can't believe it's June already. Hannah's birthday is the 6th, this Saturday. My mom and dad are coming in on Thursday for the weekend and everyone is all excited. Today is Tuesday and I haven't done anything yet to prepare, how exciting is that?

Anyway, I have the pictures ready from the Relay. I wish I had better pictures of our tree, but it was so crazy that night it seems like everything went by so quickly. It was so beautiful at night, with all the lights shining and the gold "leaf" ribbons. It was worth all the work. We are now donating it to a lady who will be using it for her vacation bible school this summer.

All together we raised $215 from Hannah's duck game and the Tree of Hope. We also raised $1143 from our Quarters Lap. That is 4,572 quarters. WOW!! We were so happy with that. Next year we hope for it to be bigger and better, lining the whole track entirely. Wouldn't that be something?

One last note, Hannah had a foot xray on Saturday morning to check for abnormalities or fractures. Nothing showed up, so we still don't know why she is having pain. A friend told me yesterday that someone she knew just finished her treatment for breast cancer. She said the one lingering problem she has is foot pain. It is constant foot pain, and no one can find a reason for it. Interesting I thought, same thing that Hannah is experiencing. Hannah really overdid it at Relay. By nighttime, she couldn't walk at all. She was crying in pain. She didn't want to leave, she was expecting to spend the night with all of us, but she had to go home.

Here are some photos, enjoy!


Monday, June 1, 2009

Hello Hannah readers! What a weekend. really was a great event. We finally had wonderful weather. We did a lot of preparation before hand. Our team got together a few times, and we all put in time before the event to make it special. It was very special.

After set up, the Relay started and our family went up on stage for our opening speeches. On the way up, Hannah said she was too nervous, she wanted to go after Colby. But, she settled down and got right up to the podium and started her speech. She wrote her whole speech herself, and we were so proud of her. I have a video of it that I will post here later. Hannah introduced Colby next, saying "I would like to introduce my sister Colby. She makes me feel happy when I'm not feeling good." Colby was next, and what a speech she gave. She really spoke from the heart and I thought her speech was very moving. I was next. It was quite a feeling getting up in front of all of those people. I wonder how many people were there. It certainly looks like a big crowd when you are standing up in front of all of them. I thought I would be pretty nervous, I've never been one for big public speeches. But, after I started, I wasn't that nervous. It actually felt quite easy after everything else we have been through. Speaking is nothing compared to watching your child scream in pain, or vomit uncontrollably or sit by herself, alone in a crowded room of her peers. I wasn't nervous, I just didn't want everyone to be bored!

After our speeches, we headed down to walk the survivor lap with Hannah. She was crying, and I thought it could be because she didn't want to walk alone. But, she said my speech made her cry. Dave and I walked that first lap with her, and she was so happy. She was smiling and waving to everyone that was gathered around the track clapping. She was limping but she made it. Colby joined us for the next lap, which was the survivor/caregiver lap. After that, everyone joined in around the track. At our tent, Hannah ran a "Magic Duck" game. She had a baby pool filled with ducks, each with a number on the bottom. We had lots of prizes, and lots of fun. We also had a "Tree of Hope." This is something I have wanted to do for so long in our house, I just never had the time (or the room) to do it. AFter our team finished our tree, we decorated it with lights, and then gold ribbons-the color of childhood cancer-with names of those to be honored. Our tree was so beautiful! I put names of all of the children I follow with cancer, both survivors and angels. We sold ribbons for $1 to raise money for the ACS. With our Duck Game and the Tree of Hope, we raised $215!

Our team was also in charge of the first "Quarters Lap." I read on Kasey Radford's site-HERE- about their Quarter Lap and immediately emailed our Relay organizers to see if we could include a Quarters Lap in honor of Kasey. Kasey lost his battle with cancer on February 2, 2009. The idea is to line the entire track with quarters, laid directly on the track. I calculated that is we made it all the way around the track, quarter to quarter, we could raise $7,940! We didn't quite make that, but to find out how much we made, and the rest of the information on the Relay, you have to check in again tomorrow. I'm so tired that I'm going to fall asleep typing (like I did last night) and I haven't downloaded my pictures from the night yet, so I have to finish the update tomorrow.

Thanks again for all of your support. I have the Relay pictures ready to go, and they will be to all of you soon.