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.

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

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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

Saturday, October 25, 2009

Hello everyone! We hope you all have had a good couple of weeks since we last updated. Our routine has been the same and everything is relatively smooth here.

Colby has a horse show tomorrow, Hannah chose not to participate. Instead, she entered Tod in the dog costume contest. We have been busy making Tod a costume (don't they make stores for that?) The costume started out as a lamb, and somewhere turned into a bunny. Hannah has matching ears and bunny nose. I'll post pictures after tomorrow. We discussed the fact that she may not win, in hopes that she remains upbeat and calm regardless of the outcome. She seems to have trouble comprehending things like that. I have seen it happen before.

We are actively working on getting Hannah's Cans for Cancer incorporated and approved as a 501 (c) 3 non-profit corporation. We are working on a new logo, website, etc. Lots of exciting things. Some new projects too. Here is our latest:

Last year for Christmas, we had a toy drive and had so much fun handing out toys at the hospital to all the kids. We also adopted three families from the hospital. We adopted one and two wonderful families that read Hannah's blog (hi there!) adopted the other two. It was so wonderful knowing that 3 families that would not otherwise have been able to have Christmas for their kids were given a Christmas. What could be better for Christmas than that?

This year we have decided to focus on adopting families. It is so great to see the generosity of the many individuals and corporations that bring in gifts to the children around the holidays. It is also fulfilling to be able to provide families with the gift of happiness. For these parents to be able to give their kids something from their "wish lists" is a true gift to give in the spirit of the season. I know that with the economy as bad as it's been, many more families will need help this year. These families struggle simply to try and make ends meet through their child's struggle with cancer. To be able to spend any money on things like Christmas presents is out of the question.

This year we will again adopt a family for Christmas. If you think you would also like to adopt a family, we would love to help make that happen. I have spoken with the hospital and they have several families in need of help this Christmas. We would like to match those families up with someone who can help. If you think you can help, please email us. Together we can make a difference.

♥Kim

Monday, October 12, 2009

Let's start off with the continuing good news, Hannah had a brain MRI today and again, ALL CLEAR! Usually I post ahead of time about upcoming MRI's but this time was a bit different. Hannah had been complaining about headaches for a few weeks now. Besides that, she has been saying she was dizzy, almost more of a feeling that she was going to faint, rather than dizzy. She also has been having some morning sickness again. All of these symptoms can point to a few different problems-one of them being tumor recurrence. I just couldn't bring myself to put it down here, because that would make it more of a reality.

Hannah's MRI was at 9am this morning. We had to be there at 8am in order for her to get her iv started first, and make it to MRI in time. She did great this time in getting the iv in, with hardly a movement and just a few tears. The MRI was quick, only brain this time. We got the results back around 3pm, what a relief! She wasn't very happy with me for taking this picture-this was on our way down to MRI, with the iv in her arm.

So let's back up to the rest of the weekend. Friday started off with Hannah's sleepover at our house. She had been planning and planning this night, with lists all over the house. She made a big welcome sign for the five girls that came, we had make-your-own pizzas, Zubber (weird rubber play dough), smores on the backyard fire pit, jiffy pop, movie and laughing into the night (until about 12:30am.) Loads of fun, Hannah loves to be the host.

Saturday we had horseback riding and began preparing the Halloween goodie bags for the hospital. This is something we have been preparing for for quite a while, ordering goodies online, shopping locally. Hannah decided that this year she would like to take the Halloween bags for the oncology kids at Schneiders. She spent a lot of time up front on ordering just the right goodies for the bags. 400 bags!! The hospital celebrates Halloween during the entire week, and sees about 50 children a day, so 400 bags would suffice for the kids and their siblings. Boy did we have fun putting them together, most bags for the kids that can have food, about 100 for kids who can not eat anything, and 4 bags for the kids in transplant. We ALL got involved in putting them together, Hannah and I made Dave stuff the candy!

There is a part 2 to this-when I explained to Hannah that we would not be at clinic during Halloween to hand out the bags, she wasn't very happy. She loves to do projects like this, but even more, she loves to be personally involved. She wants to be the one handing out things to kids. So, we made a compromise that we had to get approved by the hospital first. We decided to take pumpkins in for the kids to decorate. We got pumpkins donated from several local places-thank you Diane-and took them in today so that Hannah could hand them out to the kids. She decorated a few with Faye from Childlife, and probably would have stayed all day decorating the rest of them.

Back to Saturday-we had to wash and wipe all of the pumpkins before we took them into the kids. After that, Hannah wanted to make a "big sugar cookie" for the Hofstra softball team her "adoptive family." Here she is doing the icing.


Sunday morning we left early to make it to Hofstra's first game of the day. They were all happy to see her, and Hannah loves getting together with them. It was a beautiful day, and we had a good time watching them WIN the first game. Someone brought out visors for the girls, since it was bright and sunny and we had a hard time seeing the field. Here is Hannah surrounded by the team with their cookie she made for them. She just loves going there. We really missed seeing Kayleigh pitch, but we saw Olivia instead, a freshman pitcher who did a great job.

We had to pick up a few more goodies for the Halloween bags, and did that on our way home. We closed the pool, finally, on Sunday afternoon. Did I mention we got the CO last week from the town? FINALLY!! Sunday evening we finished the goodies bags, and packed the car with our wagon full of pumpkins, 2 more boxes of pumpkins and 5 boxes of treat bags.

Hannah and I left bright and early this morning at 6:15am to make it to the hospital by 7:45am. That's the "rest" of the story, whew! Hope your weekend was fun, and a bit less busy than ours!

♥Kim

Sunday, October 4, 2009

Yesterday was a lot of fun and a big success! We raised $221 for Sarah and Cans for Cancer at the yard sale. Thank you to everyone who donated, visited (so nice to see you Mrs. V!), purchased and helped spread the word! Thanks to Pam, Emilie and Victoria for helping Hannah, Colby and I the ENTIRE day during the sale, couldn't have done it without you all! We were so happy to have a visit from our friend Kaitlyn and her family, who were all out apple picking. We know Kaitlyn from Schneider's, she is now 6 months off treatment for leukemia, and doing great! Here is Kaitlyn, far right with her sister Lauren and Hannah doing a few crafts during the yard sale. Thanks for stopping by, miss seeing you guys at the hall in clinic every week :)

Speaking of yard sale, I wanted to make everyone aware of another yard sale coming up for a good cause. Here is the information for our friend Jackie (remember her from her awesome bone marrow donor drive we participated in?):

The Pay it Forward Garage Sale Fundraiser is in 1 week from today from 10am-4pm. We are very excited as we have TONS of both new and old items for sale. There is definitely something for everyone. Why not start your holiday shopping with us?

Pay it Forward with Jackie Garage Sale Fundraiser

Where: 697 East Drive (Off Route 109)
Lindenhurst, NY 11757
When: October 11, 2009 (raindate: October 12th)
10:00 a.m. - 4:00 p.m.


Thank you to all who have contacted us to arrange a donation drop off or who have already dropped off your generous donations. We ARE still accepting donations - please call Cyndi at 631-495-9483 to coordinate a drop off time.

For more information on Pay it Forward with Jackie or to learn how to make a monetary donation please go to

http://www.facebook.com/l/94d11;payitforwardwithjackie.blogspot.com/

We're on to our next venture...Halloween for the oncology ward, more to follow!

♥Kim

Thursday, October 1, 2009

Just a reminder to everyone to come by and check out the large yard sale at Cutchogue East on Saturday, 9am-2pm. The weather report is calling for rain, but the sale is INSIDE-so please consider coming out and browsing if you have some spare time.

I am planning a big update for Hannah's Cans for Cancer soon, lots of exciting things happening! For now, please please pass this along to anyone local encouraging them to come by the yard sale!

♥Kim