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!


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...


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 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!!


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!


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,

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.


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, 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!


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.
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.


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.


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!


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;

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


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!


Monday, September 28, 2009

Three updates in a week, we haven't done that in a long time. But, we have some important information we want to share. Please feel free to share this with any friends also, the more the better!

This Saturday, October 3rd is the neighborhood yard sale and chinese auction at Cutchogue East Elementary School. We will be there with a table selling up a storm (hopefully). All monies collected will be donated to the "Auctions for Sarah" fund and Hannah's Cans for Cancer. We will have lots of goodies to sell, including some things that were donated for the ebay Auctions for Sarah. Hannah also plans on making some of her famous baked goods. We will also be holding a special raffle at our table. So...lots to see and choose from!

If you have any items you would like to donate to the cause, we would love to have your goodies too. Please email me at or call at 631-298-3580 so we can arrange a pick up by Friday.

If you have nothing to donate, but have some time on Saturday (and maybe you're feeling hungry for some goodies), please come out to the sale. We will be in the parking lot at the school from 9am-3pm selling and raffling. It's a very large organized sale, and should be lots of fun.

Sunday, September 27, 2009

We arrived back home from Indiana tonight. We ended up leaving Thursday evening around 5pm. We drove until the middle of Ohio, stopped around 3am. The next morning we drove another 5 hours and arrived at my mom and dad's by 1pm. The trip was about 14 1/2 hours in all, the girls did very well. They fell asleep around 10pm, and slept until we stopped. There was a moment of thinking that we should just keep driving, but that passed pretty quickly and we were all in bed by 3am.

Although we all wished we were there for another, more happy reason, it was nice to be with so many relatives. The girls were happy to be with Sydney again, they were asking for her the whole way there. The services were very nice, so many friends and family showed up to say goodbye to grandma. My cousin Darrin spoke at the funeral so eloquently. I don't know how he did it, because he had everyone in tears. I'm sure grandma was looking down smiling though. Playing cards with grandpa and smiling.

We left to drive back home this morning at 5:30am NY time (4:30am Indiana time). The drive home took about 13 1/2 hours, and we were home by 7pm. The girls slept again for a good part of the time-including the big girl in the car too. Much easier leaving early in the morning than starting out late in the day.

There is no school tomorrow for Yom Kippur so we have a day to recuperate and get off our fast food high. I have some pictures to post, tomorrow. One other thing, tomorrow (Monday, September 28) Chili's Restaurant is donating 100%, YES 100%, of their proceeds to St. Jude's Research Hospital. It's a great opportunity to help fund research for pediatric cancer. So, if you get hungry tomorrow, stop by Chili's!


Thursday, September 24, 2009

On Tuesday, September 22nd, my grandma Stib passed away (my dad's mother). She lived a long and full life, she was 95 when she died. I am lucky that I have many great memories of my grandparents from when I was young, growing up right down the street from both sets of grandparents. So many friends of mine did not get to experience their grandparents when they were growing up.

Our family is traveling to Indiana today-in about an hour for the funeral services. We have decided to drive, since the flight times and prices were not so good for a last minute flight. My mom and dad have made the 13 hour trek several times, but we have never driven before. Cross your fingers that we make it with minimal traffic, minimal bathroom breaks and not too much head bobbing from drowsy drivers (that being Dave and I.) He is notorious for sleeping while driving. I haven't done that since I crashed my car once when falling asleep at 55mph. Ok, too much information!

Maybe Grandma heard my cries for mercy, and got me out of the half marathon...he he. Here is Grandma with Colby, Hannah and Sydney in 2006 (pre tumor for Hannah.)


Monday, September 21, 2009

Happy last day of summer everyone. We're still here, getting adjusted to our new school routine. On day 5 of school Hannah came home early with a stomach ache. She also called today and wanted to come home right after lunch, but I made a deal with her, and she stayed. She told the nurse that we were weaning her medicines, and she was having stomach aches. I had not told her about the weaning of the meds, because I didn't want her to know. The doctor mentioned it in front of her during her last appointment, so that's where she heard it. I told her the day that she came home that I was putting it back to her old dose-although I didn't. This will be a very slow taper down, since last time she really crashed when we lowered her dosage too quickly. Following that, we had to double both of her nausea meds, so she has been on pretty high doses since then. We just don't want a repeat of that, so we're moving very slowly this time.

Other than that, school has been going well for Hannah. She has been able to do the normal amount of homework so far, although she does need assistance from me to get started. She started her pre-teaching today, going in a half an hour early to get extra help. That worked so well last year, so we're doing it again this year.

Hannah also started swim team last week on Thursdays. It's now indoor at Safe-T-Swim. Hannah was reluctant to go in, but one of the instructors recognized her and came over to help her out. It's really a great exercise for Hannah, and she seemed to enjoy it, after the help from Katie. Hannah also starts chorus tomorrow before school, started piano last week, and went back to horseback riding after being off for 4 weeks. Things are back in full swing, religion starts also next week. Don't think we can fit much more in, and don't want to. Let's see how long we can keep with up comfortably.

Hannah got a new hamster last weekend....this one is a teddy bear hamster she named Sunny. Sunny isn't very "out of the cage" friendly like Chester was, and that doesn't really make Hannah very happy. The hamster is pretty skittish out of the cage, so we're hoping that subsides after she gets a bit more used to us. The dogs haven't really figured out she's there, so far so good.

I guess I can finally announce our activities for this weekend. We have been planning this for several months, but now that it is a reality, I thought it was ok to "officially" announce it. The girls and I are participating in a half marathon/marathon on Saturday in East Hampton. I decided several months ago that I was going to run the half marathon (13 miles), and after a friend signed us up, it was a done deal. I noticed they had a race for kids also, and the girls agreed to sign up for a marathon. NO-not all on one day-here is how it works: they had to run/walk a total of 25.2 miles prior to next weekend's race. They logged their miles, and it has to be signed off on prior to the race. They have both reached their goal! On the day of the race, they have a one mile kids fun run, making their total a 26.2 miles-a full marathon. The only problem is that my race starts at 8am, and the kids begin at 8:15am. I wish I could see them do their run, but Dave will be there with them. Kind of ironic that the "real runner" of the family is the only one not running. I figure that I'll be going so slowly that I may actually get to see some of their race..ha ha. Wish us luck!

Please remember that September is National Childhood Cancer Awareness month. One easy thing to consider doing this week to help raise awareness-please sign the petition HERE. It only takes a minute of your time!

Pictures next time, I'm off to bed!

Thursday, September 10, 2009

Today was Back to School Day here on Long Island. Colby headed to her first day at the new school for 7th grade, junior high and Hannah is now officially a 5th grader! Colby is now riding the bus to school, but I still drive Hannah since she goes in early for pre-teaching and review each day. I didn't really know what to expect from Hannah, last year the first day-make that the first month-of school was pretty difficult for her. She spent a lot of time out in the hall, just put it that way, crying with anxiety.

This year, although she said multiple times that she didn't want to go to school, she jumped right out of the car and headed into the building all by herself. She had been in the school quite a bit over the summer for math tutoring, some of it done in her new 5th grade classroom, just to try and ease the transition for this year. We even went in yesterday to drop off some of her school supplies so that she wouldn't have too much to carry today.

Well, she headed right in, went upstairs, but didn't make it all the way to her classroom. She turned around, came back downstairs crying and stopped halfway down the hallway. The guidance counselor came out, talked to her, and they walked around the halls a bit. Then, another aide came by and Hannah agreed to go upstairs with her. She went into the classroom, and sat at her desk while the other students were talking as a group. I hear that she eventually joined them, and was fine for the rest of the day. She told me she just didn't want to go into the classroom and start school yet.

One of the major differences for Hannah this year is that no longer has a dedicated one-on-one aide to help her during the day. The school thought Hannah was self sufficient enough that they could place an aide in the classroom, but someone didn't need to be with Hannah full time. We were fortunate enough to get (after several meetings) Hannah's beloved aide from last year, as the classroom aide for this year, Mrs. W. So, she will still be in the room to help when Hannah needs extra assistance, she will go to Hannah's specials with her (gym, art, music) and will meet with Hannah in the mornings for the pre-teaching. She will no longer be there specifically and only for Hannah. I have mixed feelings about this, but agreed to try it and see how it goes. Hannah said to me after school that she didn't mind being by herself, she liked walking in the halls by herself (guess that didn't apply first thing this morning though.)

We are all adjusting to the changes in our schedules now. Colby is out for the bus by 6:45am-yikes! This actually makes it easier to get Hannah up and going in the morning since I'm wide awake by the time I have to get Hannah up. I wake her up a bit earlier than last year, so she isn't rushing and has plenty of time to wake up slowly and get going. She is NOT an early riser!

On the medical side-we had our clinic visit this week. Hannah is due for bloodwork, to check counts and be sure everything is stable and normal. They also set her next MRI-brain only-for October 12th. After that, assuming and hoping that all is well, she doesn't go back to clinic until December! She will have to visit the endocrinologist in October also, that is a primary area of concern right now. Her oncologist and I discussed his thoughts on growth hormone, and it's yet to be determined whether she will need it or not. If she stays on the growth curve she is currently on, she will end up around 5 feet tall, which is in normal range for women. This is acceptable, and would not cause her to have to take the shots. Yet to be seen, we'll see where we go from here.

Hannah has also decided that she wants to do something for Halloween for the clinic. She is browsing Oriental Trading non-stop and is ordering things for the kids at clinic to have for Halloween. I hope we can pull it all off between now and October 12th, should be possible!

Remember that September is
Please show your support for all the kids who are fighting.


Monday, August 31, 2009



team unite banner.gif

Yes, it's September again already, which means it's Childhood Cancer Awareness Month. We have our gold ready to wear this month, and I am actively working on the current Team Unite Strategy -strategy #41. Please visit the Team Unite website by clicking on the picture above to read their strategy. They have such good ideas and are a wonderful group of parents and others who got together and have become a powerful voice in the fight for more awareness for Childhood Cancer. I do know some of these people-although we have not met in person, two of the leaders of the organization have both lost children to cancer-Jessica and Henry. Please take a moment during the month to check out their ideas to help us in this fight.

We would love to hear stories of what you are doing this month to help raise awareness, please share with us in the guestbook (or email me directly).


Saturday, August 29, 2009

At this rate, I'll still be talking about our Indiana vacation at Christmas! Speaking of Christmas, we'll be spending it in Indiana, we made our reservations already. So back to the vacation, we did lots of fun things including a trip to a water park, a cigar boat parade, swimming, campfires, several trips to Carlsons hot dog stand, blueberry picking, a lemonade stand at the neighborhood garage sale, and lots of hummingbird watching on the deck. It was fun and relaxing.

Sydney came back to New York with us. We took a trip over to the ocean to check out the waves from hurricane Bill. The beach was GONE! I have never seen it like that, pretty big waves all the way up to the boardwalk. Now we're in the middle of storm Danny, but it's been nothing more than rain.

This week we also participated in a bone marrow drive with our friend Jackie. I met Jackie's mom online, she is a little girl with leukemia that lives on Long Island. Jackie now goes to Schneider's-the same hospital Hannah goes to. Jackie was has been working so hard holding bone marrow donor drives to find more donors. You can read Jackie's story HERE. Jackie's mom set up the drive and asked everyone to bring a can for Hannah's Cans for Cancer. The girls and I went and WOW, were we impressed! Everything was so organized and people were streaming in. Jackie's mom had done a lot of work ahead of time, she had ads in the newspapers, and even a radio station there to broadcast from the drive. They signed up 62 people (including me) to be bone marrow donors. Jackie ran this drive in honor of Kai, who is still looking for his match for a donor to save his life. We had a wonderful time meeting Cyndi and Jackie, she is such a cutie pie. Jackie was very involved in her drive, handling some of the paperwork herself. She is only six years old but is way beyond her years!

You too can be a bone marrow donor, it's EASY! Most of the time, it's just like giving blood-they take the stem cells out of one arm and put them back in the other. You can save the life of someone else desperately in need of your help! Please consider registering to be a donor HERE.Kim