December 31, 2008

My last post of the year...

HAPPY NEW YEAR!!

May 2009 be happy and healthy for all of you.

With love,
the Prokops (still cold in Indiana)

Thursday, December 25, 2008

Merry Christmas everyone! We are safe and sound at Grandma and Grandpa's house in Indiana. We were one of the lucky travelers that made it in and didn't end up spending the night in an airport somewhere. The girls were very excited to make it here yesterday, even though a bit sleepy (we left the house at 4am.) Poor Hannah was throwing up on the side of the very cold road at 4:30am, I told her she was melting the snow! How's that for Christmas spirit?

No pictures, can't load them here, but we all had a great time opening our family gifts last night, then Santa's stockings this morning. We are here with my sister and her family too, which is a lot of fun for Colby and Hannah.

Christmas is such a special time, always time for reflection on what the season is all about. Please say a few extra prayers for our friends Diego (who died yesterday on Christmas eve) Diego and Coleman colemanscott who is not doing well at all. Cancer never stops.

Love to you all from Indiana. I'll leave you with Mimi's (Julian's Mama) Christmas video, watch for Colby and Hannah. Thanks Mimi, it's great!

MIMI'S CHRISTMAS VIDEO


Kim

Saturday, December 20, 2008

Is anyone watching this St. Jude's special tonight on tv? Hannah and I were working on a video she is making to put on YouTube, and this show came on. It's a paid special to raise money for St. Jude's, they are highlighting families whose children have cancer. and are treated at St. Jude's. I'm waiting to see a child I know. It's interesting to hear Hannah's perspective on the show. Her first comment was "St. Jude's isn't the only hospital you can go to you know."

It's not an easy show for me to watch. I know what it feels like to be there. But I don't know. This little boy has a brain tumor-ATRT, an incurable brain tumor, he died 6 months after the filming of the show. Hannah just said "oh, he died? But he was so little and so cute. That is so sad." Doesn't matter how cute or little he was, we just don't have a cure yet. Someday I hope we will, but until then, we will keep funding organizations like CureSearch and the Pediatric Brain Tumor Foundation.

And, Hannah and our family will keep on with Cans for Cancer. I just updated the figures for Cans for Cancer. We have raised nearly $14,000, and donated over $11,000 to help kids suffering with cancer. Next year our focus will be on setting up Cans for Cancer as a non profit foundation, and growing our efforts to raise more money. On Friday, Nancy Krakowka, one of the teachers in charge of the student council, presented us with a check for $2,100 from the Turkey Trot we participated in in November. Wow! Hannah's school and student council have been so supportive of Cans for Cancer, we can't thank them enough. We'll try by keeping up our work and continuing to help kids that need our support.

Hannah's last comment was "why do they keep showing all these kids that die?" Unfortunately, so many kids do die. Unfortunately...

Kim

Thursday, December 18, 2008

Yes, we DID IT! It was so much fun, yesterday we delivered all of the gifts to the oncology floors at the hospital. I did begin this update last night, but fell asleep so I'm trying again tonight.

We started on the inpatient floor, Santa went around to each room, while Santa's helper reported back to us on the age of the child and what they liked. Hannah and Colby then picked out the gift and Santa delivered it. Some of the older children that were able to come out with their iv poles came into the toy room and checked out the selection for themselves, and got to choose whatever they wanted. We had many toys left, and next headed down to the clinic (where Hannah is seen now) for outpatient hematology/oncology kids. Santa had visits from many kids, some that sat on his lap, some that ran away screaming. It was great to see the kids rush in, with their brothers and sisters, so excited to be able to pick out their own toys! We had plenty for everyone, with some left over to leave with childlife for the many other deserving clinic kids.

Pictures of us preparing the night before and from yesterday:




















It was a great day. We also delivered the gifts for 3 families that were adopted, 1 by Hannah's Cans for Cancer and another 2 by a local family that reads Hannah's blog and wanted to adopt a family (or 2). How great is that? We delivered big bags of toys for all 3 families.

I'll sign off tonight by wishing Dave a Happy 50th Birthday!! Yes, tonight is the BIG 50! We celebrated with a nice dinner at home and a cake, decorated by Hannah. She told me as I was frosting the cake that if I wanted to work in "her bakery" that I had better learn how to frost the cake correctly...ha ha. She wants to buy a bakery asap and start up!

One last tid bit of information. Hannah has been having many stomach issues lately, with stomach aches bad enough to keep her home from school. This week she came home Monday morning, was out Tuesday still feeling sick, out Wednesday for the toy extravaganza, and back in today. The latest thought is that she has vincristine toxicity. Vincristine is a chemo drug, which can cause bowel issues, as well as neurological issues. More on this later, but she will start a new medicine this weekend. I hope it works, because she really hasn't felt well lately. One year out from chemo (today) and you would think it's done and over!!! Unfortunately not.

Kim






Sunday, December 14, 2008

So much to do, and so little time! That always happens at this time of year. Here are a few things we have been doing this week. I hope you make it to the end of the post, it's so exciting!!

We have been busy collecting toys for our toy drive for Schneider's Hospital. A BIG GIANT THANK YOU to all of you. We have received so many wonderful toys, and so many nice donations too. The student council at Colby and Hannah's school decided to hold a raffle, collect money and purchase toys for the toy drive. They have been such an amazing support to us for Hannah's Cans for Cancer, with the BIG fundraiser last year, as well as their donations for the toy drive. They dropped off the toys on Friday night after they went shopping...what a great collection of toys. Thank you so much! Also, Colby's class along with another 6th grade class collected toys in their classrooms. Colby's teacher sent a note that in place of teacher gifts this year, they would like the children to buy toys to donate to the toy drive instead. How great is that? Colby's teach (and all of the teachers there) are just terrific.

Each day we arrive home, Hannah checks the toy donation box, and each day, there are more toys. Thank you to all of you that took the time out to buy the gifts, then drop them off. Wait until you see all of the toys we have collected, it's amazing! This is truly what Christmas is all about, helping others. I feel so fortunate that Hannah is doing so well and we are collecting toys, rather than in the hospital. We are blessed.

Tonight we separated all the toys into age groups. We put them all in big boxes, so when we get to the hospital we can easily find an appropriate toy for each child. Mrs. Santa was dropped off tomorrow, so I'm all set. Santa and the elves will be arriving shortly. The girls and I also finished shopping for the family we are adopting. Those gifts we will wrap and put together for the girl and her mom. We will be delivering those gifts also on Wednesday, along with the gifts for the other 2 families that have been adopted by another local family that reads Hannah's blog and asked to adopt 2 families this year, WOW!! 

We also had a party and collection for our overseas troops at the 4H this weekend. We arranged to collect items of need for our troops to send to Operation Moms (Men/Women of Military Service) Cookies. They are a not-for-profit organization that collects items and packages them to send to our military service men and women. Each 4H member purchased items from the troop wish list, and collectively we put together an amazing group of items. We also made cards to go along with the items, expressing our thanks for their service, and well wishes. The clubs really had a good time making the cards and they looked great. Here is a picture of the group with their items and cards. 


Now on to our BIG ANNOUNCEMENT:
Today Hannah was adopted! WHAT?? I learned of an organization called Friends Of Jaclyn (FOJ)from someone else's blog. You can read about this amazing organization in-depth online at their website. From their site, FOJ matches a child with a college or high school sports team based on geographic location. Once the team and child have been matched, there is a ceremonial adoption. The child is surrounded by 20 or 30 new friends that rally around him or her. A deep bond is formed between the child, the child's family and the sports team. The relationship is a priceless gift. The gift is in the relationship; a child is gaining a loving support network and the team is gaining an insight into the value of life and the power of love. The result of this connection is mutual respect, support, friendship and love. I contacted Denis Murphy, Jacqlyn's father, and he responded very quickly. He has been working for a few months now to match Hannah up with a team, and notified us a couple weeks ago that the Hofstra Softball team was looking for a girl to adopt. It was a match!! We met with the team and two of their coaches today. What a wonderful group of girls, they were so welcoming and down to earth. Hofstra ia a Division 1 softball team, and very good! They won the NCAA championship last year and we hope to be there this year with them when they win it again.

We ate breakfast with them, met them all, and shared Hannah's story. They had sent the girls both t-shirts a couple weeks ago, and today they presented both of them with their own official softball team jerseys. The girls were so excited and Dave and I were just humbled to see these college girls so interested in being involved with little Hannah. We saw where their team played, and heard about their demanding workout schedule, and dedication to their team. They are like a family, and they made us feel like a part of that family. Maybe they don't know how much this means to Hannah and to our family, but it is a support system that we didn't have before. It seems to come at such a perfect time, with Hannah dealing many emotional issues. They asked Hannah to be their bat girl at their games, so I hope we get to attend many of their games this year. Their official season starts in February, so we are really looking forward to that.

I spent some time talking with one of the girls on the team whose boyfriend was diagnosed with non-Hodgkins Lymphoma just days before she signed with Hofstra. He went through chemo and radiation, and she went with him. They thought he was in remission, but it recurred in a new area. He passed away. I felt a bond with her because, unfortunately, she knows what Hannah has gone through.

Here are a few photos from our visit, including a big group hug. Hannah said she is going to put together a video from our day with all of the photos, so when she is finished, I'll share that here. 
 
I'm off to wrap presents...thanks for visiting,

Kim











Monday, December 8, 2008

We have a date...today we got a confirmed date from the hospital for our toy day. We will be handing out the toys on Wednesday, December 17th. Colby and Hannah are looking forward to it, as are Santa and Mrs. Clause! It should be a lot of fun, but we still have so much to do! We had planned to do a little more shopping today, but Hannah came home from school early with a stomach ache. She looked terrible when I picked her up, and slept for 5 hours when she got home. Her stomach aches are still not under control, so we'll be addressing that at her next visit.

She was better when she woke up, and ate dinner. She was peppy enough to make cookies for our friends Coleman and Caden Coleman's Website. Their 5th birthday is Wednesday.

Thanks again to everyone participating in our hospital toy drive. There is still time, please drop off all toys or donations by Tuesday morning, December 16th. Or, give us a call and we can come by and pick them up! If you have no idea what I'm talking about, scroll down!!!

Kim

Friday, December 5, 2008

TGIF! Time is really flying by, with lots to do before our big toy day! We did receive word about the family we are adopting. The patient is a teenage girl, with a single mom. We can't wait to go shopping for some fun things for them.

We also had another family that reads Hannah's blog request a family to adopt. Isn't that wonderful? They are adopting a little boy, 6 years old with leukemia, also with a single mom.

This is all so exciting. We have been collecting toys through our toy drive also, for the kids on the oncology floor. We hope to visit them the week of December 15th. We will know the exact date soon.

Hannah really gets a kick out of checking the toy box every day for new toys. She goes through each of them, anazlying them. She wants to keep many of them too... such great toys! Thank you all so much for all of the toy donations and monetary donations too. Your gifts will help us make so many other kids happy at Christmas time. We love you!

Kim


Toy Drive

This year the girls want to do two things to help kids with cancer from Hannah's Cans for Cancer program. First, we are adopting an oncology family this year from clinic. We do know the patient with cancer is a pre-teen girl, but we are awaiting the rest of the details on the family to be able to purchase gifts for them. We are so excited about this, and hope to make Christmas very special for a family struggling with cancer who may need some extra help this year.

The other thing the girls want to do is visit the 4th floor pediatric oncology floor at Schneider Children's hospital, where Hannah spent her time when inpatient. The plan is that Dave will dress up as Santa, I will be Mrs. Clause, and they will both be elves. Yes, you can all stop laughing now, it should be quite amusing. We will have boy and girl gifts for all ages and will travel room to room handing out gifts and candy to all the kids. We plan on leaving toys for the bone and stem cell unit children also, but we can't enter that area, as it is strictly quarantined.

We had to get special permission from the hospital to be able to go up on the 4th floor. Usually, they do not allow donors to directly give the gifts, due to hospital and state regulations. Also, no child under 12 years old is typically allowed on the floor if they are not a patient or a sibling (I never knew this.) Since both of the girls are under age 12, they will not be allowed to actually enter the rooms, but the children can come out to the hall or the doorway. If that isn't possible, their parent or a Childlife helper can deliver the gifts.

We are very excited! There is a lot of work to do though. As you're probably thinking...these are very ambitious projects. I'm thinking the same thing..but I know we'll pull it off. The thought of bringing these kids a little bit of happiness at Christmas will keep us on track and rolling! We are in need of toys, lots of toys and FAST! We will be delivering these toys to the hospital and the family sometime during the week before Christmas, which doesn't leave us a lot of time. We need boy and girl toys, of all ages, but mostly in the age range 6 years old and above. There are kids of all ages on the oncology floor, but not that many very young children. The children were most often around Hannah's age or older. If you are out and about shopping for Christmas, please help us help these kids, many of whom will be in the hospital on Christmas, instead of at home with their family, as they should be. It's difficult to be in the hospital, and especially difficult to be in the hospital on a holiday.


Please consider donating to Hannah's Cans for Cancer Toy Drive this year. If you do not have time to purchase a gift, and could drop off or send a donation instead, that would be appreciated also and will go directly to purchasing gifts for the children. Hannah designed a sign for the bin that is now out in our driveway. Please drop off any unwrapped gifts to our Toy Drive box at our home, 1556 Grand Ave, Mattituck. If you would like us to come pick up at your house, we would be happy to, just send me an email or call (information on the side bar on the left of this page.)

Tuesday, December 2, 2008

Another day at home, Hannah was down for most of the day. Here is a picture I took of her this morning, look at her baby Tod up there protecting her!!



She had a stomach ache, headache and sore throat the entire day. She pepped up a bit, you can see her here in the box I was wrapping to set out for our Toy Drive! I knew she wasn't feeling well when she didn't want to wrap it herself, she laid on the couch and watched me. She did start feeling a bit better by late afternoon, finally ate a bit and did some homework. We're going to try school tomorrow and see how she makes out. There are quite a few kids in school sick right now with a similar virus.

Thanks to all of you for the great response to our Toy Drive. I received many emails offering assistance, that's wonderful. I'm still hoping to have more information to report tomorrow, and will pass it on as soon as I do.

Kim


Toy Drive

This year the girls want to do two things to help kids with cancer from Hannah's Cans for Cancer program. First, we are adopting an oncology family this year from clinic. We do know the patient with cancer is a pre-teen girl, but we are awaiting the rest of the details on the family to be able to purchase gifts for them. We are so excited about this, and hope to make Christmas very special for a family struggling with cancer who may need some extra help this year.

The other thing the girls want to do is visit the 4th floor pediatric oncology floor at Schneider Children's hospital, where Hannah spent her time when inpatient. The plan is that Dave will dress up as Santa, I will be Mrs. Clause, and they will both be elves. Yes, you can all stop laughing now, it should be quite amusing. We will have boy and girl gifts for all ages and will travel room to room handing out gifts and candy to all the kids. We plan on leaving toys for the bone and stem cell unit children also, but we can't enter that area, as it is strictly quarantined.

We had to get special permission from the hospital to be able to go up on the 4th floor. Usually, they do not allow donors to directly give the gifts, due to hospital and state regulations. Also, no child under 12 years old is typically allowed on the floor if they are not a patient or a sibling (I never knew this.) Since both of the girls are under age 12, they will not be allowed to actually enter the rooms, but the children can come out to the hall or the doorway. If that isn't possible, their parent or a Childlife helper can deliver the gifts.

We are very excited! There is a lot of work to do though. As you're probably thinking...these are very ambitious projects. I'm thinking the same thing..but I know we'll pull it off. The thought of bringing these kids a little bit of happiness at Christmas will keep us on track and rolling! We are in need of toys, lots of toys and FAST! We will be delivering these toys to the hospital and the family sometime during the week before Christmas, which doesn't leave us a lot of time. We need boy and girl toys, of all ages, but mostly in the age range 6 years old and above. There are kids of all ages on the oncology floor, but not that many very young children. The children were most often around Hannah's age or older. If you are out and about shopping for Christmas, please help us help these kids, many of whom will be in the hospital on Christmas, instead of at home with their family, as they should be. It's difficult to be in the hospital, and especially difficult to be in the hospital on a holiday.


Please consider donating to Hannah's Cans for Cancer Toy Drive this year. If you do not have time to purchase a gift, and could drop off or send a donation instead, that would be appreciated also and will go directly to purchasing gifts for the children. Hannah designed a sign for the bin that is now out in our driveway. Please drop off any unwrapped gifts to our Toy Drive box at our home, 1556 Grand Ave, Mattituck. If you would like us to come pick up at your house, we would be happy to, just send me an email or call (information on the side bar on the left of this page.)

Monday, December 1, 2008

I was hoping to include a picture of Hannah with her Toy Drive collection box, but unfortunately she came home from school this afternoon not feeling well. She never really got any better tonight, finally ate one piece of dry toast. She is complaining of a stomach ache, headache and sore throat. When I signed her out at school, there were many other sick kids on the sign out sheet so a lot of kids are sick right now. 

Thanks to Stephanie, we have a Santa suit waiting to go! We also got word that the hospital has a family for us to adopt for Christmas. We know that the girl is a pre-teen, but we are awaiting all the other details. 

In case you missed last night's entry....please check below.

Kim




Toy Drive

Yes, we are in need of toys, lots of toys and FAST! We will be delivering these toys to the hospital and the family sometime during the week before Christmas, which doesn't leave us a lot of time. We need boy and girl toys, of all ages, but mostly in the age range 6 years old and above. There are kids of all ages on the oncology floor, but not that many very young children. The children were most often around Hannah's age or older. If you are out and about shopping for Christmas, please help us help these kids, many of whom will be in the hospital on Christmas, instead of at home with their family, as they should be. It's difficult to be in the hospital, and especially difficult to be in the hospital on a holiday.


Please consider donating to Hannah's Cans for Cancer Toy Drive this year. If you do not have time to purchase a gift, and could drop off or send a donation instead, that would be appreciated also and will go directly to purchasing gifts for the children. Hannah designed a sign for the bin that will be out in our driveway beginning Monday, December 1st. Please drop off any unwrapped gifts to our Toy Drive box at our home, 1556 Grand Ave, Mattituck. If you would like us to come pick up at your house, we would be happy to, just send me an email or call (information on the side bar on the left of this page.)

Sunday, November 30, 2008

Hope you all had a great Thanksgiving. We sure a lot to be thankful for with Hannah's latest clear MRI. She did really well with the iv this time for the contrast, but with about 10 minutes left to go, I looked in and saw her shaking and crying. We got her out and she said she was very hot. Her face was red and she was upset, but the tech didn't want to move her since she had only about 4 minutes left. If they moved her, they would have to repeat the entire scan, and she had already been in there for over an hour. She was crying that her head hurt and her stomach hurt, but she made it for the next 4 minutes, then we stripped her sweatshirt off, and she calmed right down.

So, our Thanksgiving started out with the Turkey Trot I mentioned earlier here. This is a 5K race and fun walk put on by our PTA to benefit the school scholarship fund, and this year, they also chose Hannah's Cans for Cancer as a recipient. The weather was good and the turnout was fantastic. Over 600 people participated. We all encouraged Dave to let it all out and run this year (usually he stays with us). He came in 21st overall, 4th in his division of 44-49 year olds. He was a very polite runner (not passing people at the end, not wanting to pass the lady that ran next to him in first place for the women), otherwise he may have won his division! Bad hip/back and all, he did great.

Hannah and I gave a brief speech about Cans for Cancer to the crowd then she pulled the tickets for all the raffle winners. I think that was the highlight of the day for her! We rushed home afterwards, heading to Pennsylvania to spend Thanksgiving with Dave's Aunt Rosemary. Unfortunately, she had come down with the flu, and we had to postpone our trip. With no plans for dinner, we headed out to find a place to eat. We were 4 hungry runners. We drove for 2 hours, through towns on the south fork and north fork to find nothing! I never knew that NO restaurants were open on Thanksgiving, not even McDonald's (not that we would have eaten there, but still!) We were the family without a Thanksgiving. We finally headed to the supermarket, they had one left over prepared turkey feast that someone didn't pick up, and they said we could have it! We came home and micro-waved everything and sat down for dinner. It wasn't the same as mom's, but we were happy to have found something.

We have been working on two special things for Christmas that I can now announce to everyone. This year the girls want to do two things to help kids with cancer from Hannah's Cans for Cancer program. First, we are adopting an oncology family this year from clinic. We have not been notified yet of the family, so we haven't started purchasing gifts for them yet. We are so excited about this, and hope to make Christmas very special for a family struggling with cancer who may need some extra help this year.

The other thing the girls want to do is visit the 4th floor pediatric oncology floor at Schneider Children's hospital, where Hannah spent her time when inpatient. The plan is that Dave will dress up as Santa, I will be Mrs. Clause, and they will both be elves. Yes, you can all stop laughing now, it should be quite amusing. We will have boy and girl gifts for all ages and will travel room to room handing out gifts and candy to all the kids. We plan on leaving toys for the bone and stem cell unit children also, but we can't enter that area, as it is strictly quarantined. If any of you out there have any Santa/Mrs. Clause/elves costumes we can borrow for a day in December, please email me.

We had to get special permission from the hospital to be able to go up on the 4th floor. Usually, they do not allow donors to directly give the gifts, due to hospital and state regulations. Also, no child under 12 years old is typically allowed on the floor if they are not a patient or a sibling (I never knew this.) Since both of the girls are under age 12, they will not be allowed to actually enter the rooms, but the children can come out to the hall or the doorway. If that isn't possible, their parent or a Childlife helper can deliver the gifts.

We are very excited! There is a lot of work to do though. We have to select a date for delivery, and it has to be a weekday so we'll have to coordinate with school, Dave's work and the hospital. We already began purchasing some great gifts and got good deals at Radio Shack on toys that we think the kids will love! They were a big hit with Hannah in the store, that's for sure. She played and played with the robots and the remote control jeeps.

As you're probably thinking...these are very ambitious projects. I'm thinking the same thing..but I know we'll pull it off. The thought of bringing these kids a little bit of happiness at Christmas will keep us on track and rolling! With that in mind, we are announcing one more initiative 
Toy Drive

Yes, we are in need of toys, lots of toys and FAST! We will be delivering these toys to the hospital and the family sometime during the week before Christmas, which doesn't leave us a lot of time. We need boy and girl toys, of all ages, but mostly in the age range 6 years old and above. There are kids of all ages on the oncology floor, but not that many very young children. The children were most often around Hannah's age or older. If you are out and about shopping for Christmas, please help us help these kids, many of whom will be in the hospital on Christmas, instead of at home with their family, as they should be. It's difficult to be in the hospital, and especially difficult to be in the hospital on a holiday.


Please consider donating to Hannah's Cans for Cancer Toy Drive this year. If you do not have time to purchase a gift, and could drop off or send a donation instead, that would be appreciated also and will go directly to purchasing gifts for the children. Hannah designed a sign for the bin that will be out in our driveway beginning Monday, December 1st. Please drop off any unwrapped gifts to our Toy Drive box at our home, 1556 Grand Ave, Mattituck. If you would like us to come pick up at your house, we would be happy to, just send me an email or call (information on the side bar on the left of this page.)

I'm off to bed, my head is spinning!!


Kim


Thursday, November 27, 2008

Happy Thanksgiving Everyone. We hope you have a safe, happy and blessed Thanksgiving.

A quick note to say that Hannah's spinal MRI results from yesterday were all clear...NED! She is now one year out and still cancer free!!

Kim

Tuesday, November 25, 2008

Just a quick update tonight, because I'm having a bit of trouble seeing the screen. Yesterday, while trying to shore up the garden fence so our adventurous little Tod would stay out, a branch came back and hit me right in the eye, before I had a chance to even close my eye. I saw the eye doctor who said it was scratched, but would be fine. He dilated my eye though, and it still has not gone down all the way, and it's pretty blurry. 

Anyway, we spent most of the day at NYU today for Hannah's screening for a clinical trial for a drug called Aricept. Some of you may know the name, it is currently used for adult Alzheimer's patients. It has not been used in kids before. It is specifically used for attention impairment, but rather than being a stimulant like Ritalin for ADHD kids, it works in a different manner, specifically beneficial for kids with cognitive impairment due to brain issues like cancer. So far NYU has screened 4 kids, with only 1 qualifying for the study. Hannah was number 5, and did end up qualifying as attention impaired, and met all the other requirements. We have not yet decided to participate. It is a phase III study, meaning it has already passed phase I (toxicity) and phase II (dosage levels) and is in the final phase. This study is being administered at NYU as well as several other places around the country.

Please keep Hannah in your thoughts and prayers for tomorrow. She has her spinal MRI tomorrow, then we head to clinic for her monthly visit. We should had preliminary results by the clinic appointment. Usually, if kids recur with standard medulloblastoma (only contained in the brain), they will recur in the brain first. That is not always the case (King Julian), but nearly always. That's what I'm telling myself, and so far so good. I will update tomorrow after we get home.

More to come tomorrow on many things like a special Coaches vs. Cancer event next week, new Cans for Cancer information, and Hannah's adoption!!!! 

Kim


Monday, November 24, 2008

No Cancer!! Thank Goodness, Tod does not have cancer. From the pathology, Tod has irritable bowel disease. He remains on steriods for now. We have cut his dose in have since he is acting quite lethargic (although that is not a typical side effect from steroids.) I hope that cutting his dose in half helps him feel a bit better.

It was pretty quiet here over the weekend. Colby and Hannah went to Vermont this weekend with their Aunt Katheen. Although Hannah was quite apprehensive about being away from mom and dad, we spoketo her a few times, and she had a great time. They went to a Fresian horse farm today for driving (carriage) lessons and said the place was incredible. They were on the go quite a bit and even got to see some snow.

Dave and I went to a fundraiser for a little boy named Christopher. Christopher has Gorman's disease... which is an incurable disease that deteriorates the bones. His parents are searching nationwide for some treatment that will help him survive, including clinical trials which aren't covered by insurance.

Speaking of clinical trials, Dave and I are taking Hannah into the city tomorrow. The initial reason was to meet with a pediatric psychiatrist who specializes in kids with brain tumor issues. He also happens to be running a clinical trial which is just starting for a drug that helps with neurological issues following brain tumors. The kids on the trial must meet several criteria prior to be included in the trial. Tomorrow is the first of the screening interviews. We are not sure if we would even include her in this study (although it's a Phase 3 trial, so it's made it through the first 2 phases safely), but we thought we might as well find out a bit more information about it.

Don't forget about the Rudolph Roundup for our dear friend Coleman. I'm so sad to see he can no longer walk by himself, it's heart breaking, but his family is now back in Iowa. You can give them words of encouragement at ColemanScott

RUDOLPH'S ROUNDUP

I wanted to announce a special raffle that is going on for our friend Coleman (here is his website.) Wonderful Mimi (Julian's Mama) has organized an online raffle to help raise money for the Larson family to support them for Christmas. As you all know, Coleman has been having a tough time lately, and now he is on a new therapy which works by trying to cut off the blood supply to the tumors. So, they march on.

The boys have received many gifts from friends all over the country, so this time Mimi decided to raise money to help the family. This way, they can use it as they need it for Christmas, treatment, just something special for the boys and their family. I think it is a wonderful idea!!!

If you would like to participate, here is how it works (directly from Mimi):

One entry in the raffle is : $5 or three entries: $10 .
(Maximum 3 entries , BUT donations for more welcome.)
There are numerous gift items for the raffle, including things like Team Unite gear, candles, CureSearch items, and even Coleman and Caden tshirts. The raffle winners will be pulled on the boys' birthday, December 10th.

The $$$ will go exclusively to TEAM LARSON (100%) , please be generous ,we want their holiday season to be as amazing as possible...

You can either mail in the money for your entries and/or donations to,
Mimi Avery
111 Aviator dr
Fort Worth , tx 76179

Or paypal them at mimiavery74@msn.com

If your heart is willing , please include a short (or not) note for The Larsons . Even if you use paypal ,I will print the notes out for them .


I know times are tough for everyone, so do what you feel you can! Thanks to all,

Kim


Wednesday, November 19, 2008

RUDOLPH'S ROUNDUP

I wanted to announce a special raffle that is going on for our friend Coleman (here is his website.) Wonderful Mimi (Julian's Mama) has organized an online raffle to help raise money for the Larson family to support them for Christmas. As you all know, Coleman has been having a tough time lately, and now he is on a new therapy which works by trying to cut off the blood supply to the tumors. So, they march on.

The boys have received many gifts from friends all over the country, so this time Mimi decided to raise money to help the family. This way, they can use it as they need it for Christmas, treatment, just something special for the boys and their family. I think it is a wonderful idea!!!

If you would like to participate, here is how it works (directly from Mimi):

One entry in the raffle is : $5 or three entries: $10 .
(Maximum 3 entries , BUT donations for more welcome.)
There are numerous gift items for the raffle, including things like Team Unite gear, candles, CureSearch items, and even Coleman and Caden tshirts. The raffle winners will be pulled on the boys' birthday, December 10th.

The $$$ will go exclusively to TEAM LARSON (100%) , please be generous ,we want their holiday season to be as amazing as possible...

You can either mail in the money for your entries and/or donations to,
Mimi Avery
111 Aviator dr
Fort Worth , tx 76179

Or paypal them at mimiavery74@msn.com

If your heart is willing , please include a short (or not) note for The Larsons . Even if you use paypal ,I will print the notes out for them .


I know times are tough for everyone, so do what you feel you can! Thanks to all,

Kim

Tuesday, November 17, 2008



Tod is home! I picked him up today and paid the bill (ouch). He is now on prednisone (yes, a steroid), pepcid and a special diet (another ouch).  He doesn't have all of his energy yet, he is usually the first one up when he hears a cracker package, or the back door opening but he has been just laying and sleeping. We can't let him out by himself anymore, yep, just in time for winter. We don't want him eating any more sand or poop or wood or rotten tomatoes. 

We will get the pathology results back by the end of this week to know what course of action to take next. We're all happy to have him home, especially his brother Riley and of course his mommy Hannah. 

Speaking of his mommy Hannah, she has had a very good few days. Last weekend was the fall horse show. It was cold, but it was another fun day. The girls did well again, here is a picture of both of them with the ribbons they won.
Hannah won Grand Champion for the second time in a row. We were so proud of her, and she was so proud of herself. Here are a few pictures of both of our champions....







Kim




Monday, November 17, 2008

Our little Tod is in the hospital tonight. He was still vomiting and a bit swollen this morning, so we were off to the vet again. They took another xray, and whatever was in his stomach had not moved since the xray from last night. The doctor recommended he have a scope to check it out before a surgery. So, onto the animal hospital for a sonogram, blood work, general anesthesia, endoscopy and an intestinal biopsy. The spot in the stomach turned out to be sand, with some other junk mixed in with it. The doctor said there was quite a bit of sand in there, which they flushed and vacuumed out. However, the sonogram and scope showed a pretty bad intestinal disease. He said it is a severe condition, and it is most likely a sign of either IBD-intestinal bowel disease or cancer. WHAT?? I thought I was going to throw up when that word came out of his mouth. My face must have looked very strange because he stopped right there. Of course, it's probably not but he had to mention it.

They took four biopsies from poor Tod, and we should have the pathology back in a couple days. Unbelievable. I hated leaving him there today, but they had to keep him for observation and fluids. They also want him to be able to eat without throwing up before he can come home.

Hannah has been asking if Tod is ok, she misses him not being here at home with us. I hope he'll be back tomorrow.

I did want to mention a few things going on now. If you make into McDonalds in the next few weeks, they are running a special campaign to raise money for the Ronald McDonald Houses around the country. We have never stayed in one, but we know many people who have. I never really thought that much about the RMH before, and once in a while I would throw some spare change in the box at McDonalds. But I have seen close up how families rely on RMH, and how much McDonalds does for these families whose children are seriously ill. So, if you are in McDonalds getting those yummy fries, don't forget to help out and donate a dollar to benefit the Ronald McDonald Houses.

I also wanted to make everyone aware of an upcoming fundraiser for Hannah's Cans for Cancer, the 3rd annual Mattituck Cutchogue Teachers Association Turkey Trot. It is a 5K run/walk on Thanksgiving day to benefit local charities, as well as the annual scholarship fund. This year, a portion of the money is being donated to Hannah's Cans for Cancer. We were so excited when they told us of the plan. Our family is participating and already has our forms in, we hope your family will join us too (if you're local of course.) It's a lot of fun, we have done it for the past 2 years, even while Hannah was on chemo. She just amazed me last year with her determination and resilience. I'm sure I posted it here, I just haven't gone back to check yet. You can read all about it HERE: TURKEY TROT , then click on MCTA 3rd Annual Turkey Trot on the right hand side to print off the application also. Let's do it together!!!

Good night everyone, good night little Tod!!

Kim

Sunday, November 16, 2008

I had planned a lengthy update tonight, I have a lot to report on, however, as Peggy always says, our plans have changed again!

Dave and Colby rushed Tod to the dog hospital about an hour ago. He was throwing up non stop, and Dave thought it looked like chocolate. Then we noticed he was severely swollen, and his belly was rock hard. Hannah and I stayed here, she was pretty upset when he left. She just fell asleep next to me on the couch, and I'm just here hoping and praying everything is ok.

Here are the things I will mention, and elaborate later:
Thank You to all of you who listened to me vent about Hannah's struggles lately. I appreciate all of the advice here on the blog, and also through the emails. I really appreciate that you all took the time to write, research and just lend an ear. We have an appointment set up with a psychologist in the city for the week of Thanksgiving. Not only will he meet with Hannah, but at this time we have also set her up for a screening appointment for a clinical trial of a drug they are hoping will help with attention impairment for brain tumor kids. More on all this later.

Hannah a good three days to end the week that started off terribly. Dave and I discussed that we need to try to gauge her frustration level, and instead of pushing her to the edge and over the cliff, try to refocus her before she reaches the point where she boils over and then can't stop. Maybe it's working, or maybe she blew off so much steam on Monday that she was calm for the rest of the week.

The girls had a horse show today. They both did great, many news ribbons around the house. It was fun, but it was COLD!! Hannah won Grand Champion for her class today, for those of you that aren't horse people, that means first place overall in her division! She was pretty proud of herself, and we were too!

Dave and I celebrated our 14th wedding anniversary this week too. We went to see Shawn Colvin play (anyone remember her? "Sonny came home" was one of her big hits.) It was good, and we tried very hard to stay awake during the concert. Old, yes we are two old people. Colby had a basketball game that night, so Hannah was here by herself with the two girls that came to babysit. they have been here only once before, and although they are just the sweetest girls, Hannah doesn't really know them that well. She informed me right before they came that she wasn't staying here in the house with those two girls. Well, we already had concert tickets, much coordination had gone into making this happen, so in my mind, she was staying :) She was a bit weepy, but pulled through and had a great time with them.

There are new calendars out too to benefit cancer research. Hannah is featured in one month. They look great! Heidi Randall, mom to angel Jessica created the calendars, she is so talented. I'll provide more information on those soon too.

That's all for now, I'll post some pictures later, but I can't concentrate with Tod rushed to the hospital. I have to sit here and wait for them to get back, hopefully all together!

Kim

Tuesday, November 11, 2008

Well I've been thinking about what to write, or actually how to write it. Hannah has been struggling. She is struggling both cognitively and emotionally.

Dave and I met with her teacher last week regarding her schoolwork. We have noticed that homework is becoming too much. There have been nights that Hannah has worked nearly 2 hours on her homework. She becomes frustrated after such a long time and just breaks down. Nothing gets done after that. We were told she should be working about 40-45 minutes a night, and after that, she's done. We are noticing this now that the work is becoming more difficult and more fast paced.

Hannah has been going into school at 8:30am each day to work with her aide Mrs. W. They preview work that the class will be doing, so that Hannah has already been exposed to it. They also finish up any work not done during the school day, study for tests, go over times tables, etc. It has really helped a lot, and Hannah's stress level seems to have gone way down. However, Hannah is now falling behind a bit during the day on the classroom work. It's not that she can not comprehend the information, it's that she takes longer to do the work than her peers. She needs more time and more repetition to be able to absorb the material. She already has extra time for tests (time and a half) and she has really needed that. But her teacher also suggested less work load, more time for all tests, including state tests, ranking of homework so that the most important things are done first and worked on for only 40 minutes, working with small numbers, rather than the larger numbers as the work becomes more difficult and no more PT in school, so that she is not out of the classroom for that amount of time. Hannah's neurologist had already suggested no more school PT, and that she do some specific things at home. Hannah has also been evaluated for assistive technology. This would involve any special technological aides to help Hannah organize and process her work. We don't have any results from the evaluation yet to see what their recommendations are.

Hannah has also been struggling emotionally. It seems that when is pushed too far, she just loses it. This can be over too much homework, asking her to brush her teeth, dropping her off at school. We have noticed this for quite some time, but it was rather sporadic until recently. Without going into all the gory details, yesterday I got a call from the assistant principal as well as the school psychologist. Mrs. W. has also been researching information on traumatic brain injury (TBI). The research notes that TBI kids (brain surgery qualifies at TBI) exhibit behavioral problems including not being able to control their temper, not obeying directions, as well as restlessness and agitation. Hannah exhibits ALL of these. And it's getting worse. Sometimes she is totally out of control, screaming, crying, kicking, biting, hiding, hitting, etc. We have tried every approach possible, believe me.

Hannah knows there is a problem. A few weeks ago she called me into her room after I put her to bed. She was crying. She had a difficult time telling me what was wrong. She finally came out with "I'm sad because I was thinking about something. I'm different." I talked with her to see exactly what she meant...different how? Different from other kids, different because there were some things she couldn't do anymore? She just kept saying no. She could not articulate how she was different, she just said "different from before the surgery." She said sometimes she just can't control herself. She can't stop from crying, even though she doesn't want to. She can't stop the rage and anger once it starts. She just knows she is different and that makes her sad.

How is that for heart breaking?

There is more, but I'm ending now for fear of overloading everyone with too much information!

Kim

Sunday, November 9, 2008

More to add later, but a quick note about our friend Coleman. We were just heartbroken to hear that his latest scans at MSK in NYC show growth of the cancer. This now makes him ineligible for more chemo, and for the antibody treatment at MSK also. This is not good news at all. The family is still praying for a miracle, let's join them....

http://www.carepages.com/carepages/ColemanScott/


Kim

Thursday, November 6, 2008


Unfortunately, this has been Hannah the last 2 days. Yesterday, we went to school, but instead of going in, sat outside for 1/2 hour in the car, laying down, hoping to feel better. We came home. She went to bed, slept until 12:30pm and didn't eat anything until 6:00pm.  She seemed to be fine after that and finished all of her homework. 

Today, she ate very little before going to school complaining of a stomach ache even worse than yesterday morning. The school nurse called twice before lunch, and said Hannah's stomach ache was a 9 today out of 10. We negotiated with Hannah to stay through lunch, and I would pick her up if her stomach ache/headache didn't improve. She hung in there and stayed the day, then went to swimming afterwards. She ate dinner fine tonight, and even had a night time snack. 

We added Zantac to her routine tonight. I did give her some this morning, but it did not help. I gave her a pill tonight, then tomorrow morning I'll give her the Kytril at double dose and see how that works. The doctors said we'll just keep experimenting until something works. This could continue for years, it's a product of the tumor site and very common with medullo kids.

For those of you out there that have had morning sickness, it's what I compare it to. Can you image having it for years on end? 

God speed to Aunt Marietta, my mom's sister who passed away this week from cancer (what else??) I really wish I could have traveled to Indiana to attend the funeral, but they all know I was there in spirit. She will be missed by all.


Kim

Monday, November 3, 2008

I just wanted to post a few pictures of the girls from Halloween night. We had a good time, and now have much too much candy at home. It's funny, but I think I'm the only one that hears it calling my name day and night. Colby and Hannah haven't even looked at the bags since they came home!

Kim





Saturday, November 1, 2008

What a weekend it's been. Let's start with today. A very big THANK YOU to all of you who helped us raise $568 for The Smiles for Scott Foundation. Thank you to everyone who sent money, baked goodies and came by to buy from us. Hannah was in charge the whole day, and she did great. Besides all the baking she did, she made signs, organized the table, took photos, encouraged people to come over to the table to buy, and even took a platter and went door to door to the businesses! She is planning on putting a bake sale video on YouTube, so I'll let you know when it's finished. Here are a few pictures from the day. I hope you can read the one of the sign with Hannah's watermelon cookies (her favorite because they taste like the candy cane cookies Mom). The sign reads:  Good kind of dough with chocolate supposed to be watermelon.  I didn't change any of her signs, I loved them!



Hannah very proudly told everyone about the "boy named Scott who died." I even had someone tell me they were familiar with the Smiles for Scott Foundation! That's great!

More on Halloween, school, etc. etc. later. For now, I am signing off to set my clocks back...yeh!!

Kim

Tuesday, October 28, 2008

On the way to the hospital this morning, I told Hannah she would need to take the clips out of her hair because we didn't want them to get caught up in the machine. She said I don't know why I'm going anyway, I don't have a brain tumor anymore. Thank goodness she is RIGHT! Her MRI checked out fine, and although we don't have the report yet, the radiologist reported that there is no sign of tumor, and her ventricles are normal size (meaning she doesn't have hydrocephalus.) 

We finished our MRI about 1pm. Hannah did very well, even though they tricked her today. The doctor called down to MRI and wanted them to draw blood for her labs, since she was getting an iv anyway, they figured it was easier than also having her get a finger stick. However, that meant that they put the iv in at the beginning of the MRI and had to leave it in for the entire MRI. She was NOT happy about that. Usually they put it in, shoot in the contrast, and take it right out. It takes all of 30 seconds. She shed a few tears, but laid very still and did great. 

On the other hand, I was paranoid the whole time. Another doctor came into the viewing room during the MRI and I was wondering why 2 doctors, is there a problem? Then the tech was standing up, looking at the monitor and I was wondering..is there a problem? When we got upstairs to clinic, the doctor walked quickly by us, not really looking at us and I was wondering...is there a problem?  When we finally got into the room 1 1/2 hours later to meet with them, I couldn't even look at the doctor. I didn't ask her anything, I just sat there waiting and looking at her face (which was smiling) and wondering...is there a problem? Is she smiling because she knows after she tells me I'm going to fall apart? 

But, the first thing she said was "the MRI was good, no problems." I just let out a big sigh of relief. I have thought and thought so many times about what it would be like if they told me the tumor was back. What would I do, what would I tell Hannah, what would I write on the blog? What would happen? I think my mind built a barrier around itself and when I heard everything was clear, it was a relief, but it was also a reality check, the reality being I really was not ready to face the possibility that Hannah's tumor was back. It's almost like a bad dream. You know you had a dream, and you can feel the terrible after affects of the dream, but you can't quite pin down exactly what happened in the dream. You just know that when you woke up, you didn't want to go back to sleep. I thought maybe this was how the parents feel whose children have relapsed, whose children have died. I felt a twinge of sadness and guilt because we got good results, and so many out there have not. So many out there don't have their children to put to bed tonight. 

What a rollercoaster. Hannah's blood counts also all looked good, and for the first time in a long time, they are all in normal range, both reds and whites.  We celebrated on the way home with dinner at Olive Garden, our favorite after MRI restaurant. We both danced in our seats to Frank Sinatra songs and ate lots of breadsticks. Oh, and did homework too. Hannah got an ice cream sundae to top it all off. We go back next month for a spinal MRI and check up, just before Thanksgiving.

Thank you to all of you who prayed with us, thought of us, and supported up today. It was an especially stressful day, and we couldn't have asked for better. That feels good to say!

I also wanted to provide an update on Hannah's Cans for Cancer.  Today we delivered three big bags of goodies to the hospital and they were so excited. Here is Hannah getting all of the goodies ready. Hannah worked over the past month to place a big order for crafts, and we visited Walmart one day for a HUGE shopping spree for both Schneider's and the Boston Rehab Hospital. We had so much in our cart, people were staring. We were checking out and the lady with her daughter behind us thought maybe we were preparing for a party of some sort. We told her about our mission, and next thing you know, she gave us $20 for Cans for Cancer. Isn't that great? So, here is an update on our funds:

Total raised: $9,990.21
Total donated: $7,175.69
Total remaining in fund: $2,814.52


AMAZING! Thank you to everyone for your generosity and inspirational efforts and creative ideas to raise money. Our last donation was from our wonderful friends Tom and Sue, who had a party and donated the money from all the recycled cans and bottles. I think they drank A LOT!! Thank you so much Sue and Tom. We will definitely soar past that $10,000 mark after our BAKE SALE this weekend for The Smiles for Scott Foundation. Please come out to stock up on some yummy baked goods this Saturday, November 1st at 9am on Love Lane. 

Kim



Sunday, October 26, 2008

Anybody up for some cookies? Some brownies? Cupcakes? Fun? 

The bake sale is on for this Saturday, November 1st, beginning at 9am

We will be out on Love Lane, so if you're local, come on by. I looked back, and last year we were done in about 2 hours, so come early to get some goodies! With the help of many of you, and with Grandma and Grandpa kicking in too, we raised $400 for the Smiles for Scott Foundation. This year, we hope it's more! Also, if you would like to bake with us, we would be happy to have it! So far we have donations of chocolate chip cookies and irish soda bread, yippee!! Please drop off any goodies at our house by Friday. You can leave it downstairs on the bench inside the house, the door will be open for you. It does not need to be packaged, we will do that here, if it's something like cookies, because we're putting everything in bags of equal packages so that everything (almost everything) can be sold for one price.  And if it looks really good, it will never make it to the sale, because we'll be taste testing it in our own kitchen....JUST KIDDING!! 

So now you know what we have been doing nonstop. Today we made three different kinds of cookies-Russian Teacakes, Watermelon Slice Cookies, and animal cookies on a stick. We have yet to bake two of them, that is on the agenda for tomorrow. Believe me, the last thing I wanted to do was stand in the kitchen today for hours making cookies (the couch was calling me loud and clear) but once we got started it wasn't too bad. Hannah just loves to bake, so that makes it fun.

No more nausea/vomiting issues since the last one, so that's good. She is having some emotional issues though. Now, I could let my mind wander here and think-is it some kind of tumor growth causing issues in her brain? I guess that would be a stretch, wouldn't it (just nod your head yes here, thank you.) I think it's more like residual issues from the removal of the tumor (possible posterior fossa syndrome.) It's hard to tell, but once it gets started, she can't control it. Tonight she threw something and broke a key on Colby's computer. That started a long rage that was finally calmed by Dave holding her tightly while she was kicking and screaming and biting like crazy. She then let me carry her to bed, and she calmed down.

We were talking a bit about it in bed, and she said "I can't help it, I just get so mad and then I bite. You know mom, I was always a biter." I just had to laugh silently. She is correct there, when she was little, we had a terrible time trying to get her to stop biting. One time when her cousin Sydney was visiting, we were all at the aquarium and Hannah got mad and bit Sydney. We have a picture of the girls together, Colby and Sydney are smiling, but Hannah  is crying. I had the photo out for a while, and Hannah used to get so mad looking at it. For a long time she denied that she had bit Sydney. Tonight we were laughing that when Sydney was just learning to talk, she used to say "Annah bites" because she couldn't say Hannah.

It's difficult for Hannah, it's difficult for Colby, and for all of us. It's hard to explain how it happens, and how bad it really is. She knows afterwards that what she has just done is not right, but she just can't stop it. She told me that last week she had a "fit" at school over a science project. It took her a long time to get calmed down. It's something we need to address and we are looking into that.

Signing off for now, hope you all had a great weekend,

Kim



Saturday, October 25, 2008

So the good, the bad and the ugly, where should we start?

How about the good? Hannah had her first sleepover since she was diagnosed at her friend Mary Kate's house. All in all, she did very well. I was half way expecting a call during the night, but she was fine! It's nice to do something so normal for a change.

How about the bad? Well we're hoping it's not bad, we're praying it's not bad, it just can't be bad. Hannah seems to be having an increase in her stomach issues in the morning. Since our last clinic visit, she has vomited probably 4 times. She has slight headaches, but nothing significant. The doctors have decided to move up her MRI from next month to this month. It won't hurt, and we might as well check it out. They told me that many medullo kids have nausea issues for years after their treatment, but because Hannah's issues seem to be increasing, they might as well just check it out. Her MRI is scheduled for Tuesday at noon, then we have her monthly checkup at 4pm. We will have the MRI results by then. So, between noon and 4pm, I'll be doing everything I can not to think about it. I'll have Hannah with me, so that will certainly be a distraction. Sometimes I think she never stops.

How about the ugly? Well, this is ugly.

I went back to the hospital on Friday to have my pic line changed to my upper arm. It has been so painful the way it was put in. The doctor tried multiple times...multiple... and couldn't get it in anywhere else. He finally ended up just adjusting my current line, after about an hour of multiple pokes, and numbing injections. I was so numb, I couldn't feel my fingers. I just closed my eyes and kept thinking "Hannah, Hannah, Hannah, this is NOTHING compared to what Hannah had to endure."

One more thing to share tonight. I am lifting this from Coleman's website. I found it very insightful myself, interesting. I want to point out that like Peggy, Coleman's mom, I'm not asking for any donations to one group or another, just making you aware of some interesting information as to where our money goes when we donate. This is by no means a comprehensive list, but these are some of the most popular places to donate. I had posted some information earlier this year about American Cancer Society, this information here is a bit more comprehensive. Thank you Peggy and AJ's dad, Bob.

A HUGE thanks to Bob for his dedication and hard work in gathering this valuable info! Please read what he’s gathered…AND above all, please join in helping make a difference. There are so many things you can do right from where you are sitting now… PLEASE join click and go to PeopleAgainstChildhoodCancer we need all the help we can get!
***After you read it, you can make up your own mind.***
Taken from Aj’s page- Bob writes….
Prior to Fathers Day 2007, I had not thought how funding for cancer research worked. That all changed. I wanted to share some facts, thoughts and observations based on my experiences and research. I only seek to inform. I will not suggest what charity you should support. But, unless the funds are directed towards the right research, PAC2 will only continue to grow, and I want to shut it down. Let's just look at a few of the big boys that are competing for your money.

Let's start here - Hospitals
When a child is treated, the hospital incurs costs and produces a bill. The bill covers labor (docs, nurses, admin, etc), supplies, new equipment and other operating costs, and, if it has a facility, research. Obviously not all hospitals have research labs, and the size and funding varies.
The bills may not cover all these costs or the hospital may want funds for new equipment, research or new buildings, so hospitals have a fundraising arm. If the facility has a research facility, research may be into cures and treatment of any disease you can imagine. Some may go towards cancer research, both adult and childhood cancers. So, if you give to XXX Hospital, your money is directed towards many various causes, an unknown portion related to childhood cancer research.

OK, how about the biggest (baddest?) kid on the block? The American Cancer Society.
The mission statement of the American Cancer Society (ACS) reads: "Founded in 1913, the American Cancer Society (ACS) is the nationwide community-based voluntary health organization dedicated to eliminating cancer as a major health problem by preventing cancer, saving lives, and diminishing suffering from cancer, through research, education, advocacy, and service. With more than two million volunteers nationwide, the ACS is one of the oldest and largest voluntary health agencies in the United States. "
Many chose to become involved with the ACS fundraising events, including the "Relay for Life". The funds collected by the ACS are used for many causes. The chart shows the various things supported (from the ACS 2006-2007 Fiscal Year).



Looks black and white to me. The numbers speak for themselves with regard to the funding for childhood cancer, but just to be clear, 2.96% of funds are directed towards the entire suite of childhood cancers. Imagine you participate in a Relay-For-Life. You raise $2,000. $200 (10%) goes to admin, fundraising expenses take another 22%, or $440. Of the remaining $1360, 2.96%, or $59 of the that original $2000 you raised will be directly targeted towards childhood cancer.
Overall, Charity Navigator gives ACS 2 of 4 stars, same as last year. For fundraising efficiency, ACS receives 1 of 4 stars, same as last year. John Seffrin, Chief Executive Officer earns $619,551 or 0.06% of expenses. Program expenses (what it spends on the programs and services it exists to deliver) are 68%, admin 10% and fundraising expenses 22%. Total revenue last year was $1.029 Billion.
Why, when less than 3% of the funds are directed at childhood cancer, do we see so many childhood cancer victims in the ACS literature?
(I know I will hear the "well research into adult cancers can benefit children" argument. Well, most adult cancers do not occur in children. And simple downsizing of adult doses is where we are at now, and the long term consequences have been demonstrated time and again and again and again to be simply unacceptable. We need targeted research! More on that to come.)

Another contender? The Leukemia and Lymphoma Society



From its website: "The Leukemia & Lymphoma Society (LLS) is the world's largest voluntary health organization dedicated to funding blood cancer research, education and patient services. The mission of LLS is to cure leukemia, lymphoma, Hodgkin's disease and myeloma, and improve the quality of life of patients and their families. Since its founding in 1949, LLS has invested more than $600 million for research specifically targeting blood cancers."
I am sure that many of you have had excellent experiences with the LLS. Many chose to become involved with the LLS fundraising events, including the "Light the Night" and "Team in Training". The funds collected by the LLS are used for many causes. The chart shows the various things supported (2006 data). I could not locate data on funding directed to childhood cancer. But, the chart shows 26.7% is directed at research. How much of that do YOU think is directed at childhood cancer research?
Overall, Charity Navigator gives LLS 3 of 4 stars, same as last year. For fundraising efficiency, LLS receives 2 of 4 stars, same as last year. Dwayne Howell, the President, CEO earns $494,867 or 0.21% of expenses. Program expenses are 72%, admin 10% and fundraising expenses 18%. Total revenue last year was $230 million.
Has anyone seen the percentage of LLS funds directed towards pediatric blood cancer research?

Can't argue with success - Susan G Komen
Susan G. Komen for the Cure, formerly known as Susan G. Komen Breast Cancer Foundation, was established in 1982 by Nancy G. Brinker. Nancy G. Brinker promised her dying sister, Susan G. Komen, that she would do everything in her power to end breast cancer forever. Today, Komen for the Cure is the world's largest grassroots network of breast cancer survivors and activists fighting to save lives, empower people, ensure quality care for all and energize science to find the cures. Thanks to events like the Komen Race for the Cure, we have invested nearly $1 billion to fulfill our promise, becoming the largest source of nonprofit funds dedicated to the fight against breast cancer in the world.
Overall, Charity Navigator gives SGK 4 of 4 stars, same as last year. For fundraising efficiency, SGK receives 4 of 4 stars, same as last year. Patrice Tosi, C0O, earns $513,095 or 0.21% of expenses. Program expenses are 83%, admin 10% and fundraising expenses 7%. Total revenue last year was $275 million.

The largest childhood foundation - Cure Search
CureSearch National Childhood Cancer Foundation is dedicated to raising private funds for childhood cancer research for the Children's Oncology Group, the world's largest cooperative cancer research organization. Together, we are committed to conquering childhood cancer through scientific discovery and compassionate care. CureSearch Children's Oncology Group is a network of more than 5,000 physicians, nurses, and scientists whose collaboration, research and care have turned childhood cancer from a virtually incurable disease to one with an overall 78% cure rate.
Overall, Charity Navigator gives CureSearch 4 of 4 stars, same as last year. For fundraising efficiency, CureSearch receives 4 of 4 stars, same as last year. Clarence T. Schmitz, Chairman, earns $0 (that's right). Gregroy H. Reaman, Executive Director, Scientific & Medical Affairs earns $340,000 or 0.62% of expenses. Program expenses are 95%, admin 3% and fundraising expenses 2%. Total revenue last year was $52 million. Efficiency wise, CureSearch knocks the socks off the ACS and LLS, and is even better than the truly exemplary Susan G Koman!
To take that ACS example again, of the $2000 you raise, a full $1900 is directed towards childhood cancer!
Obviously CureSearch is not the only childhood cancer charity. It should be noted that its mission is unique in the CC world, in that it collaborates and coordinates with over 200 Children's Oncology Group (COG) hospitals and their 5,000 members, as well as the National Childhood Cancer Foundation, with an ultimate mission to cure childhood cancer. This link shows some of the major diseases and areas that CureSearch researches, and tells more about COG.

Discussion
There are so many other worthy causes associated with childhood cancer; local family support organizations, St. Baldricks and Alex's Lemonade Stand to name two TOP ones; Ronald McDonald House (2 stars because its revenue declines year after year), Make-A-Wish (3 star, 74% programs, 10% admin, 16% fundraising), Candlelighters (not ranked), etc. Not to mention the parent-led Foundations, who may contribute to support, hospitals, or other.
OK, there are many organizations competing for your dollar. Other diseases, United Way, March of Dimes, Red Cross, Save the Whales, World Wildlife Foundation, you get the idea. There are over 900,000 registered with the IRS. It must be a pretty competitive business eh? Well, especially in these economic times, you can bet your last dollar that the competitiveness will only increase.
But undoubtedly, these organizations would choose to work together for the betterment of their cause right? Call me cynical. I mean they would not let egos or self interest get involved would they? You decide that for yourself.
Or they wouldn't try to accumulate wealth within the organization would they? Well here's an example, the ACS currently holds $1.4 BILLION in ASSETS (yes its a B)- money they have raised and not distributed to programs! In Fiscal Year 2006 the had an excess (revenue - expenses) of $88 million - about 22 times what they awarded to childhood cancer programs! Sure, I understand holding some back for a down year, but $88 MILLION? CAN YOU IMAGINE IF THAT HAD JUST DOUBLED THE AMOUNT TO CHILDHOOD CANCER LAST YEAR???? Why would they hold it??? Well, the nature of the charity business is that it is a business.
In the end, it's your call. Decide if you want to provide support for research for a cure, support building a new playroom in the hospital, support other families in difficult economic circumstances, and what percentage of your donation you want to go to childhood cancer. I just wanted to show some of the differences, raise a few questions for the community, and to get some stuff off my chest.

Peggy then raised the question to AJ's Dad Bob (cp: ajsspace) about where money goes when we donate to St. Jude... he did some research and here is what he found:

There are several questions on St. Judes. I have reviewed the 2007 Annual Report. Funds donated to St. Judes go towards:
1 - Operating expenses of the hospital - 33%
2 - All research (cancer & non-cancer related) - 32%
3 - Education/training - 10%
4 - Fundraising - 15%
5 - Admin & General - 10%
Revenue for 2007 was $990,652,000, with expenses of $646,310,000. (I suppose that includes the $420k the CEO makes) So, they stashed $336 million, bringing their total Net Assets to a cool $2.1 Billion! Charity Navigator ranks them a 2 of 4 stars for fundraising efficiency.
In 2007, $212 million went to research. A monetary breakdown of the research grants is not available on the St. Judes website. The website does "highlight" some research. The areas are shown below (** = cancer related, -- non-cancer related):
** Antibody therapy promising for pediatric neuroblastoma
-- Evidence links cocaine abuse and Parkinson's disease
-- Synaptic connections need nurturing to retain their structure and keep outsiders at bay
** Ink4c and Ptch1 genes collaborate to suppress medulloblastoma
** New treatment could save vision of children with advanced eye cancer and prevent its recurrence following therapy
** Subtypes of ependymomas arise from rare stem cells in the nervous system
-- Mechanism controlling DNA damage response has potential novel medical applications
** Children and adolescents with advanced cancer can make complex end-of-life care decisions (duh!)
** Suppression of FOXO1a gene might kill resistant ARMS tumors
-- Defective lymphatic vessels identified as a novel cause of adult-onset obesity
-- Drug resistant avian influenza viruses more common in Southeast Asia than North America
** Anti-tumor activity also plays a critical role during eye development in the embryo
-- Genetically modified cells migrate to brain and treat neurodegeneration in St. Jude model
-- Oral liquid hydroxyurea promising for long-term use in babies with sickle cell anemia
** Pattern of gene expression predicts multiple drug resistance, treatment failure in pediatric leukemia
** Both inherited traits and tumor mutations affect response to treatment of leukemia
While I certainly may have misclassified some of there, generally, it looks like about a 50/50 split on cancer related and other research. Additionally, there is no way to know the amount of funding for these specific grants, or if there are other grants not listed on the webpage.
But, the bottom line with St. Judes is you are donating to pay for hospital operating expenses (33%), research (32% with an estimated 1/2 of that going towards childhood cancer), and education, fundraising and general/admin (35%).
So, you give $100, some portion of $32 goes towards childhood cancer research.

Thanks for the info Bob and Peggy! If you made it this far, it's pretty “interesting” data wouldn’t you say?
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click and join PeopleAgainstChildhoodCancer.


Kim