Saturday, December 26, 2009



I wanted to share with all of you a very special Christmas gift that Hannah and Colby received from their Hofstra Softball Family. They both received these beautiful blankets made by the team. On one side they screened on some photos of the girls with the team, at some of the games we have been to. On the other side (shown below) each girl had their hand print and their number. We know a lot of work went into these, and we ALL LOVED THEM!! These are the most special of gifts-those made with time and love.

Thank you Hofstra so much!


Kim

Friday, December 25, 2009



Merry Christmas to you all. May you be enriched with all of God's love and blessings this holiday season.

If you didn't receive a Christmas card from us this year, I'm sorry. However, you weren't alone...I didn't send any out. I just didn't have the time, and it kept moving down and down on the priority list. I delivered gifts to our last adopted family on Tuesday, and then we left for Indiana on Wednesday. Maybe next year...or maybe this spring, you never know!

Love to you all...

Kim

And a photo for Aunt Shari....they are getting lots of love!

December 12, 2009

I know it's time to update the blog when people begin to email asking if everything is ok! Thanks for checking in on us. Here is what we have been up to lately:
concert, concert, black eye, sick at home from school, volleyball, swimming, horseback riding, brain tumor clinic, shopping shopping for families, eye surgery, computer virus, gingerbread houses, lacrosse, decorating, dog walking, mountain climbing,

Ok, you're all caught up now! It has been so crazy busy here since my last post, I know it's been a while. To quickly catch you up, we didn't end up traveling to PA because Aunt Rosemary got sick right before Thanksgiving. We were planning on starting on Dave's new adventure-hiking the high point in each state. We had planned on hiking PA, WV and MD in one day! Actually two of the three were drive ups-drive up the mountain, get out and put your foot on the high point, then drive back down. the other was only a short hike to the hight point. That trip is on hold for now until our next visit to Rosemary's house. Instead we decided to hike the high point in Connecticut. We ended up going on Thanksgiving day because it was supposed to rain the rest of the weekend.






The hike was listed as moderately difficult, with areas of difficult climbing. Oh yes, there were areas. When we first saw what the steep part of the climb, neither Dave nor I thought we could make it up with the kids. There were about three areas where Hannah just sat down and refused to move. After much crying and resistance, she agreed to go up with Dave. That meant that Dave carried her for part of the way-the steepest and most difficult part of the way. I don't know how he made it up that mountain carrying her up. The views were great once we made it up. What we didn't know was that we had to make it over one mountain to get to Mount Frissell (the CT highpoint, 2380 feet). So we climbed two mountains that day. Lessons we learned include: don't bring a 20 pound camera bag, don't bring a heavy backpack with lots of stuff you don't need for a brief day hike, wear better shoes so that you don't fall down so much coming downhill, DO bring a map so that so much time isn't wasted trying to find the trail head, DO a bit more research before you head out for the hike. This was our first of 50, so lessons learned. We figure that there are probably 3 high points we won't be able to do, one of them being Mt. Hood where those 3 hikers were recently lost while hiking up the mountain.

So that was our Thanksgiving day. On the drive home, we stopped at a diner for Thanksgiving dinner, which was a hamburger, salad, spaghetti! Not traditional that's for sure, but it was fun.

On to Christmas...an update on our Family Adoption Program for the year. Thanks to all of you, we were able to adopt 6 families this year, double the amount from last year! These are families that are struggling to provide for their families due, in part, to having a child diagnosed with cancer. Not only devastating emotionally, cancer takes a toll on a family's finances. Often times (like in our case) one parent has to stop work to be with the child that is sick. Hannah had her initial MRI on a Tuesday, by Wednesday morning, she and I were checked into the PICU at the hospital. We didn't come back home for 4 months! I quit my job to be with her full time.

Thank You to everyone who adopted a family and sent donations. Your kindness and generosity are so much appreciated. You have made such a difference in these family's lives for the holidays this year. Little kids don't understand that Santa can't bring presents and now these children don't have to. They will wake up Christmas morning to presents under the tree like other children their age. They will look with wonder at the tree and try to figure out how Santa got all those presents there! Their parents will feel a sense of relief and happiness! Thank you all so much!



I am signing off for now, we will be back before Christmas!!

Kim



Sunday, November 22, 2009

It's that busy time of year again! I mean to update every week that goes by, but I usually end up falling asleep at the computer. My lyme disease is back again since I came down with a sinus infection a couple months ago. Seems that my body can't fight off an infection and keep lyme at bay at the same time. Go figure! This too will pass is what I keep telling myself.

Things have been fun with our three monsters...oh I mean dogs...ruling the roost. Actually little Dani is so sweet and they all get along quite well. She is learning quickly and has picked up on so many of Tod and Riley's bad habits. They are good trainers. You should see me out walking the three of them, I have had some people stop and stare at me. Probably wondering if I'm going to trip and fall while getting my arm pulled out of socket and dragged down the road!

Hannah continues to do well. I had her teacher conference and got her report card last week. Her teacher is so impressed with how well she is doing this year. She is working more independently, is more focused and participates more this year compared to last. She still takes more time to complete assignments during class and homework, but is still keeping up with the class. We all couldn't be more pleased. Looking back, even to last year, it becomes clearer as to how badly she must have felt last year. She missed so much school. This year she has only missed one and a half days total. She was home sick one day last week. She woke up so congested, with a stomach ache and just feeling lousy. She had a bad cold, slept until lunchtime, and felt a bit better by the end of the day. By the next day she was back in school. So many kids here in our elementary and our jr/sr high schools have had the swine flu. By some miracle, neither Colby nor Hannah got it. They both got the shot, so by now they should be protected from it. Let's hope so!

Hannah has been busy with weekly swimming lessons and swim team and horseback riding. Colby just made the volleyball team at school, so now she has travel lacrosse (started this weekend), volleyball, basketball and horseback riding. Think she does enough sports? She wants to do it, so as long as it accommodates her homework and she isn't too tired, we let her. Oh, and that doesn't count her dog agility classes, religion and practice for those sports too!

Today we attended the fundraiser for the Guardian Brain Foundation, organized by our friends the Mardjanis. You all may remember Alec, Hannah's friend from Schneider's with medullo also. It was such a nice event and they raised a good amount for the foundation. I had the opportunity to meet the founder's of the Foundation, Mike and Mary Pallotta. Mary and MIke started the foundation in order to support others fighting brain tumors and their families after Mary's brother passed away from a brain tumor. An organization that started out as a very small grass roots organization has grown to do wonderful things!

Hannah had fun helping me with the raffle table and of course bowling. She asks me constantly to go bowling, she loves to bowl too! Dave, Colby and Hannah bowled with the group and I helped Amy with the event. Hannah won a basket from the raffles-what else, stuffed animals! Great job Amy!

And our biggest project that has been keeping us quite busy-our adoption plan! We have organized 5 family adoptions this year in all. In addition, others have sent money going towards those adoptions, which is a big help. Hannah's Cans for Cancer is adopting 2 families this year, each with 3 children. The gifts will be delivered to the families on December 15th, so we have been shopping in earnest. Anyone who knows me, knows I'm such a planner and like to get things done early. We are almost done getting everything just right for the families, now we will start wrapping. I know Dave is looking forward to that! THANK YOU to everyone who has participated this year in our family adoptions. You are doing a wonderful thing!

We are traveling to Pennsylvania this week to spend Thanksgiving with Dave's Aunt Rosemary. We are also undertaking a new, exciting and BIG endeavor, but we'll save that for next time. So many reasons to give thanks, we hope you all spend the holiday safely with loved ones. Happy Thanksgiving!

Kim

Monday, November 9, 2009

Happy Birthday to the best sister ever. Today is my sister Sue's birthday (29th I'm sure!) Love you!

Did I mention I tried to decrease Hannah's medicine again? I don't tell her when I attempt this because I don't want her to think about it, or to have a reaction that may not be absolutely true. One more try, one more fail, but I'll keep trying. Only 2 days after I decreased one of her anti-nausea meds, she started complaining of a stomach ache again and looked terrible in the morning. It was that same old look she used to have when she wouldn't eat anything in the morning. I immediately increased the med back up to it's original level, after a few choice words to myself, and just crossed my fingers that it would work right away. Last time we did this, we went back to the original dose and that didn't work. Her oncologist advised me then that sometimes just going back to the original dose doesn't work, and you have to double the medicine to get her back to a baseline. Trying to go one step forward and you end up going two steps back! That doesn't seem to be the case this time, when I increased them back, she quickly recovered. She seems to be fine again at this dose, I would just love for her not to have to be on these medicines for the rest of her life. I guess it's not the worst thing, but at some point I'm sure her insurance company won't want to cover these any longer.

I wanted to mention two other exciting things tonight.




2010 Team Unite Calendar2010 Team Unite Calendar Pages


The 2010 Team Unite Calendars are now available on Cafepress!!


Show your support for our kids, and join us in the fight to CONQUER CHILDHOOD CANCER!!!



Each page features Team Unite members. Also included within each month is a detailed description of one of the childhood cancers, including symptoms and statistics. The month of September features Childhood Cancer Awareness Month.



All proceeds will go to The Henry Tucker Foundation, CureSearch, and The Jessica Catherine Randall Memorial Scholarship Fund.



Please note that on our smaller calendar ("Team Unite Wall Calendar"), the informational text is a bit difficult to read from a distance. Please consider the larger size ("Team Unite Oversized Wall Calendar") if you feel this may be an issue.

We have been a member of Team Unite for a couple years now, since it was created by our friends Heide and Michelle (both moms of children who are now deceased.) They are really doing an incredible job of raising awareness and supporting families of children with cancer.

Hannah is pictured in the 2010 calendar in the month of January.




_______________________________________________________________________________________

Also, we would like to announce an upcoming event hosted by our friend Amy Madjanani (Alec's mom, www.4theluvofalec.blogspot.com)



Kids Bowling For a Cause
Includes Unlimited Bowling & Shoes
Your tax exempt advance ticket purchase will be benefiting Guardian Brain Foundation a 501c3 non-profit organization

Chance to win a Marvel or Madagascar Bowling Ball, Sony MP3 Player and more

Join us Sunday, November 22nd at 10:00 am $30 per person

Smithtown Lanes
200 Landing Ave
Smithtown, NY 11787-1722
(631) 265-0121

Please contact Amy Mardjani (631)335-9889 for advance ticket information
___________________________________________________________________

This sounds like great fun, and if you are local, please consider coming out to bowl! Hannah loves to bowl, and we plan to be there to help support Alec and his family as well as the Guardian Brain Foundation.

Kim




Monday, November 2, 2009

I hope you all had a fun Halloween. The girls had fun trick-or-treating this year. Hannah was a donut (see the sprinkles on her face?) and Colby was a bumble bee. Hannah and I made the costume together. She wanted to be a donut last year too, which was all her idea. This year it was nice to see that for the most part, Hannah was able to keep up with her friends, which required quite a bit of running! Just thinking back to last year when she was so frustrated that she was so tired and always behind everyone, it was nice to see that this year she is stronger. She did have to take a couple breaks, but it didn't seem to bother her that much.

Along the way we seem to have picked up this guy.....
I just couldn't help it, walking by her and some other dogs that were all to be euthanized. They were from an animal rescue called Last Chance Animal Rescue Fund here on Long Island, www.lcarf.org/index.php She is a 4 month old beagle mix and at this time, we are just fostering her. She would be dog #3, and has to get along with the other two crazy dogs and the rest of our family. The boys were very interested in her when we came in, and she was very timid. All is going well, she is so well behaved and house broken too-at 4 months old. We are "still deciding."

We are still working on the Adopt a Family mission for Christmas this year. Take a look!

Kim

*******************************************************************************************************************************************************************************
CHRISTMAS ADOPTIONS
So far we have adopted 3 families for this holiday season, that's awesome! I wanted to provide a few other details on how it works.

A few people have asked me if they can adopt a family with others from their workplace or with other families. YES! If you have co-workers that would like to go in together to adopt a family, that would be great. Also, if you and another family (or others in your family) would like to get together to adopt a cancer family, that's wonderful also.

Another question posed was whether or not someone from out of town could participate in our Christmas adoptions. YES! It is probably more cost effective if you live out of town and want to help if you simply send funds to cover the cost of the gifts. I would be happy to do the shopping for the family. Anyone who knows Hannah knows that this won't be a problem for her, the girl loves to shop! If you would prefer to purchase gifts and send them, that can also be done (although the gifts will have to be shipped here, but still workable!)

After you contact me to let me know you would like a family for adoption, I will contact the hospital to request a family in need. I ask them for names of patient, siblings and parents; ages of all children, sizes of all children and any specific wishes and interests of the family. When all information is received I will pass that along to you. Gifts can then be purchased, wrapped and tagged. The gifts are dropped off to me at my house (or if you live closer to the hospital, they will go directly there). We will take all of the gifts into the hospital on December 15th. The hospital handles the delivery of the gifts to the family. We leave it up to the family to decide if they would like the children to know the gifts are from "Santa" or from the parents, or otherwise. Some families with small children may not want them to know they are being "adopted" for Christmas.

I hope that clears up some questions, but please let me know if there is something I did not answer.

Wednesday, October 28, 2009

It's Wednesday night, Hannah is in bed, Colby is at a basketball game (she plays), I'm watching the Yankees on tv and Dave is at the game so I thought it was a good time for an update.

First, let me share some pictures from the horse show and dog costume contest this weekend. Colby and her friend Hanna dressed up Hanna's horse as a sheep. Hannah dressed up Tod as a bunny. Hannah was happy that she won the dog costume contest (although the only other dogs in the contest were the barn owners' dogs). It was a very good day, Colby did well in her first horse show at this barn.


Hannah had an appointment with her endocrinologist on Monday. We had many blood results to go over. Amongst many other things, we are watching her thyroid levels and her growth hormone levels. She is still borderline in terms of her growth. She is at the 3% range for height. Before the tumor, she was in the 50 percentile. She has hovered around that 3rd percentile now for the last year or so. Unless she falls under that range, we probably will not put her on growth hormone. We are hoping that is the case, since growth hormone can cause other problems, like tumor recurrence, even more disparity in bone growth (in other words, short spine, while other bones grow longer, causing her to look even more disproportionate than she already does) and a host of other things. It's complicated. It would also require daily injections. You know that wouldn't go over well.

Her thyroid looks fine, her vitamin C is good and her vitamin D is low. Her cholesterol is a bit high also, but we don't have the breakdown of good vs. bad, that is a more complicated test that will be done next time. We also need another urine sample to ensure her kidneys are not excreting too much of the C and D were are supplementing her with, otherwise that could cause problems (like kidney stones.) We have to keep monitoring these things for some time, since some of these issues tend to be delayed by years following radiation. It could be something we see 4-5 years down the road. Isn't that crazy?

We really like her endo, he is a compassionate and intelligent doctor. Unfortunately, those two things don't always go hand in hand with doctors. He is one of the good ones. We don't see him again until after school is out (wow, that's June!) Right now we have NO scheduled doctor appointments (well, other than her flu shot in two weeks.) That is just so strange. I think our next appointment will be brain tumor clinic in December, but not sure on that yet.
*******************************************************************************************************************************************************************************
CHRISTMAS ADOPTIONS
So far we have adopted 3 families for this holiday season, that's awesome! I wanted to provide a few other details on how it works.

A few people have asked me if they can adopt a family with others from their workplace or with other families. YES! If you have co-workers that would like to go in together to adopt a family, that would be great. Also, if you and another family (or others in your family) would like to get together to adopt a cancer family, that's wonderful also.

Another question posed was whether or not someone from out of town could participate in our Christmas adoptions. YES! It is probably more cost effective if you live out of town and want to help if you simply send funds to cover the cost of the gifts. I would be happy to do the shopping for the family. Anyone who knows Hannah knows that this won't be a problem for her, the girl loves to shop! If you would prefer to purchase gifts and send them, that can also be done (although the gifts will have to be shipped here, but still workable!)

After you contact me to let me know you would like a family for adoption, I will contact the hospital to request a family in need. I ask them for names of patient, siblings and parents; ages of all children, sizes of all children and any specific wishes and interests of the family. When all information is received I will pass that along to you. Gifts can then be purchased, wrapped and tagged. The gifts are dropped off to me at my house (or if you live closer to the hospital, they will go directly there). I will take all of the gifts in approximately 1-2 weeks before Christmas. The hospital handles the delivery of the gifts to the family. We leave it up to the family to decide if they would like the children to know the gifts are from "Santa" or from the parents, or otherwise. Some families with small children may not want them to know they are being "adopted" for Christmas.

I hope that clears up some questions, but please let me know if there is something I did not answer.

Still watching the Yankee game, not too good so far! Ok, now it's 4-0 and I should go to bed.

Kim