Tuesday, August 26, 2008

All clear, NED again, wonderful news. Hannah's MRI went well, quick today since it was only the cranial MRI. She even did well with the contrast injection, it was very quick and only a couple of tears. Last night she said she wanted to "make a deal" with Dad about the IV. They made a deal that if she was still, she would get $10 of lottery cards. The girl is a lottery fiend. She loves scratch off lottery cards. She called Dad right away after the MRI to report that she won the deal, and he owed her. This sparked a lot of discussion on her part about whether she wanted five $2 cards, or ten $1 cards, or 2 $5 cards, etc. She finally decided on four $2 cards and two $1 cards (she wanted me to write it down so she could remember. She writes EVERYTHING down in great detail now!!) So, another 3 months to rejoice and relax. December will be the next MRI, cranial and spinal. Thank goodness for insurance, every MRI is $5,000, and that is for EACH part done. The cranial MRI is one part, the spinal is three, so a full cranial and spinal MRI is around $20,000. WOW!

Also, something very important to announce for everyone. Did YOU know that

  September is 

Saturday, September 13th is National Childhood Cancer Awareness Day. Gold is the official color for Childhood Cancer. Here is a great way to show your support, these T-SHIRTS were designed by Heidi Randall, Jessica's mom. Jessica died from cancer last year in June, I'm sure many of you have seen her website, I have referenced it here several times. Heidi has been such a big part of Team Unite. If you are so inclined, take a look at the T-SHIRTS (they also have buttons and magnets) and WEAR ONE during the month of September to help get the word out there. P.S. Hannah's picture is one of the kids on the front. 

So many great things are happening this month, this is from the Team Unite website:

I am awaiting some facts that will help us determine the next steps but for now it is time to focus on the press, with this news and the need for the major networks to do something HUGE this year for Childhood Cancer Awareness Month. As many of you are aware, the major networks are teaming up and doing a “Stand up 2 Cancer” event September 5th . Let’s make sure that ABC, CBS and NBC are aware that September is Childhood Cancer Awareness Month. Let your voices and incredible stories of bravery be heard! We need a cure PRONTO so let’s ride the wave of this exciting news regarding S911 and get the press the children deserve. MORE AWARENESS = MORE RESEARCH $$$$$. Thank you to CURESEARCH for all you do to secure funding and move us toward a cure!

Please write to your local/national newspapers and TV New stations/programs asking them to do something to recognize September as Childhood Cancer Awareness month. And in addition, discuss the “Stand up 2 Cancer” event in your letters to ABC, CBS and NBC.

Thank you for what you are doing to support the kids!

Links for a few media outlets you may contact. Please send to any you feel would benefit our cause! We need to spread the news to get the recognition that children’s cancer deserves in September!

Contact your local ABC Affiliate station
Contact your local Fox Affiliate station
Contact your local NBC Affiliate station
Contact your local CBS Affilitate station
CBS email Form 

Thanks for being here with us, for all of your support and prayers (and cans too!!)

Monday, August 25, 2008

What a superstar we have! Hannah's play was Saturday night, and it was incredible! It's just amazing how they begin on Monday, end on Saturday, and put on an entire production of Hansel and Gretel. Here are a few pictures from the production. Hannah really had a good time and was very proud. She said she cried backstage because one of the kids was a bit intense, yelling and creating tension, which made her nervous. She asked me "when I came out to say spiders, could you see the tears in my eyes?" No I couldn't. Here is Hannah getting her makeup done, and then on stage.

I was so happy that Hannah agreed to participate in the play. I think it really helped a lot in interaction with other kids. Although, when I showed up at lunch on the two days, she was out eating in the hallway with the assistant director, not wanting to be with the kids. She even had a friend in the group, who is also in her class this year, but that's the way it is. She would rather be with adults, or someone who is there to help only her (like her helper Marissa in the play). I see this time and time again, not just with Hannah but with all cancer kids. They shy away from regular interaction with kids their own age, and interact more with adults. It's an odd thing, but very noticeable for myself and other cancer parents. It sets out kids apart, and will always set them apart, no matter how hard others try to get them involved.

We're watching Ted Kennedy on tv right now at the Democratic convention. He looks good...even after brain surgery, proton radiation therapy (just like Hannah) and chemotherapy. You can see his hair gone on the left side of his head, he walks with assistance, and his speech seemed a bit stilted. He put on a good show, and I can imagine that now he will immediately go and lay down.

We go for Hannah's MRI of the head only tomorrow morning, we'll post results tomorrow after we get them. I'm nervous. I just keep thinking of little Julian, and how he recurred at 9 months (this is Hannah's 9 month post treatment MRI). Julian only lived for 6 months after that. Sleeping tonight will be a challenge.


Wednesday, August 21, 2008

Hannah wants everyone to know that despite little Tod's antics, she loves him anyway. Here are the pictures to prove it.

Hannah had a good day today, tutoring (reluctantly) in the morning and play practice in the afternoon. I was able to leave her there today during her 2 hour practice and all was good. Tomorrow practice is all day, so we'll see how that goes. This is such a good experience for her, and I'm so glad she is doing it. I can't wait until Saturday.

Tonight we went clamming-for those of you not from the east coast-it's where you hike out to the bay and take the rake and rake through the water and sand to find clams. We went to an area that is not very populated, and had lots of luck. Here we are with our friend Emilie, we got about 15 clams in all. Dave and I came home and baked them-they are the best I have ever had! Well, with the exception of Ronnie and Paul's!! It's not really my thing-standing in the bay in sandals, not being able to see the bottom and wondering what is going to bite you while digging furiously with the clam rake. We did catch one VERY big spider crab. But, it's definitely worth the work. Here are some pictures of our adventure.

That's all for tonight, a few side notes. Hannah's next MRI is Tuesday of next week. I'm trying to keep it out of my mind right now. I got the word from my doctor today that I have Lyme disease, which explains why I have feeling lousy lately. I guess I was bitten by a deer tick sometime, didn't even know it. I'm on antibiotics, which I hope are doing the trick, since it can get pretty bad if it progresses. So, signing off with my GIANT headache...


Tuesday, August 19, 2008

Our summer is coming to an end too quickly, only 2 more weeks left! Hannah surprised me this week by joining in a local play! Yes, she said she wanted to be a part of a play that a theatre company is putting on in town, Hansel and Gretel. All the kids that sign up get a part, it's amazing watching the directors work with the group and decide within 1 1/2 hours who will have which part in the play. They practice this week, the play is this Saturday night. Hannah had a few issues the first day, but a member of the staff really helped put her at ease. She is very excited about the play, she is playing one of the "nasties" in the play, I think those are the witches helpers. The director took a few minutes out to speak to me about Hannah, he is 23 years old and had a brain tumor as a child also, a benign tumor of the cerebellum (where Hannah's was located too.) So, he really gets it!

The girls got their teacher assignments for this year, and they are both very excited about them. Hannah will have Mrs. Wilcenski with her again as her aide this year (THANK GOODNESS), so we are feeling comfortable knowing that she will be with her. School starts on September 4th.

Tod, Tod, Tod. Oh we love Tod, or by now he would be roasted on a stick being served at the Olympics! Here is what Tod has been up to lately...

Red frosting from Hannah's birthday cake after eating the rest of it off the counter
Tod smeared in mud from the creek after he went down and rolled in it...talk about stinky!
Hannah giving Tod a bath this week
Tod spilled a chocolate milk shake all over the white carpet in the living room after I left the room for ONE MINUTE
Tod in his new bed that Hannah bought him for his birthday. See the part that he chewed after only the first night?
Tod with his ice cream dog bone birthday cake that Hannah made him

Tonight he chewed a piece to the pool that is used during cleaning. Oh joy.


Tuesday, August 12, 2008

Well Hannah has graduated! We went to clinic today for our monthly check up. Hannah's counts were largely unchanged, white cell count up only slightly, ANC up slightly too. Still not in normal range, but acceptable for now. We also got a script for her next MRI-end of August. Oh boy, looking forward (NOT) to that. We discussed the osteopenia-more on that below-and that was about it. Hannah's next monthly appointment will not be in clinic, we will now go to the "brain tumor clinic" which is separate from where we have been going since the beginning. The regular clinic is where all patients are seen, no matter what kind of cancer or other hemotology issue they have. She gets her finger stick, gets weight, blood pressure, height, temperature, then we wait to meet with the doctor to review the counts and discuss any other issues. Today it was crowded as usual, with many new kids we had never seen and some old friends too--HI KAITLYN!!

Hannah is now 9 months out from the end of her treatment, she is doing well, so she has graduated!! Brain tumor clinic is only once a week, on Tuesday afternoons. When we come in for a visit, Hannah will see the oncologist, the neurologist, endocrinologist and any other specialists on that afternoon. Sounds pretty convenient, we'll let you know how it really works. But, I do believe this means she won't have to get the finger sticks any longer (although I may be wrong on that one.)

I did speak with Hannah's endocrinologist yesterday. They said that her blood work all looks normal, but she definitely has osteopenia/osteoporosis. Why? They don't know for sure, it could be the radiation or the chemo or the steroids, or some combination of all of those necessary evils. They don't want to treat her with drugs they would treat an adult with, they have many unknown side effects for children, especially girls within child bearing age. They want us to supplement with 800 IU's of Vitamin D (double the recommended amount) and 750 mg of Calcium (about triple the recommended amount) daily. We will have to do follow up blood work also in three months to be sure she is not getting too much vitamin C in her system, which can cause kidney stones.

At the time we get that blood work done, we will also have the preliminary blood work done for growth hormones. Radiation treatment usually causes stunted growth and hormonal issues (if the thyroid was in the field of the radiation, less of an issue with proton rads we hope). When Hannah had her bone age test done, she tested at 6 years, 10 months of age. In one regard, that is good news, it gives her bones more time to grow to help catch up on growth that she may lose due to the radiation to her spine. However, another doctor explained to me that the other school of thought here is why did she test so young? Is there a growth hormone issue? Although they will do the testing, the wouldn't even consider giving her any type of growth hormones until she is 2 years out from the end of treatment, since it has been known to cause tumor regrowth. So, you would get taller, but you would only have less than a 10% chance of further survival when your brain tumor came back.

Everyone keeps remarking on how tall Hannah is getting, but she has fallen off somewhat in her growth chart already to the 5.9 percentile (from the 20th, to the 10th, to the 5.9th.) We have noticed that the growth is coming more from her legs than her trunk area (where she received direct radiation.) It's something we will have to monitor from now on.

I want to share a video with you from a little girl with leukemia. Unfortunately she lost her battle, but along the way she made this video diary. It is pretty realistic, and shows some of what it's like to be a kid with cancer. The rage she displays is from the steroids (which Hannah did not have to be on after surgery, thank goodness.) It's pretty powerful. It also gives you an idea of why I spoke with the doctor today about a psychologist referral for Hannah.


Saturday, August 9, 2008

We all have been enjoying the Olympics here since the opening ceremony last night. It's fun to watch something on television that we all enjoy watching together!

I have not spoken to Hannah's doctors yet regarding the osteopenia. The doctor was out of town all week, and I had been trying since Monday to get them to return my calls. I did get a message on Friday saying that all of her bloodwork came back normal, but that the DXA scans showed significantly low bone density. WHY? I didn't get to speak to the doctors yet so I don't know what their theories and suggestions are yet. I hope to connect with them on Monday. Hannah's other endocrinologist suggested doing HGH testing (growth hormone) to determine if all of that is functioning properly-with one theory being maybe there is an issue here since Hannah's bone age test showed she is only 6 years, 10 months.

Hannah spent the week at Camp Invention. The program was Monday-Friday from 8:30am-3:00pm. WOW! Hannah wanted to sign up for this when the information came home, and didn't know any other friends who would be participating. It took about an hour on the first morning before I was able to leave her there without crying. Each day got progressively better. She told me she cried each day at some point during the program (which she did almost every day in school last year too.) I spoke to the director the first day, and she already knew Hannah from scouts, and had spoken with Hannah's counselor to prep her on giving Hannah a little extra help/attention. I felt better leaving her knowing that. The staff was excellent, and Hannah really had a good time. She just loved inventing each day, and doing the crafts, etc. She said the only part she really didn't like was lunch! Here are a few pictures of her with her inventions. Her group created a spaceship (which Hannah ended up bringing home.) It covers the entire kitchen table, so it won't be there for too much longer! The other creation is her "alien" which she created from taking apart a non-working cd player and turning it into the alien. Very creative!

Hannah's Cans for Cancer Update

So many wonderful things have been happening with Hannah's Cans for Cancer fund, I wanted to give an update. Here are our most recent numbers for Hannah's fund:

Total amount raised: $9,828.40

Total amount donated to kids with cancer and their families: $4,655.66

Total amount currently in fund: $5,172.44

Thank you so very much to all of you who have helped us help the children and their families. So many people have donated money, donated cans week after week (even washed with soap and water!!), supported us through fundraisers, hosted their own Cans for Cancer drop off sites and so much more. I think the saying goes "many hands make light work." That is just so true. All of us working together have done wonderful things for these kids.  Here is a picture of Hannah outside of the hot dog stand run by the Bugdin family. See their Cans for Cancer bin on the side? Stop by for a great hot dog meal, they are across from the Capital One headquarters in Mattituck on Route 25. What a great idea! They drop off cans that are collected there to us.

I know of others who have vending machine routes, collect from their friends and family, and many who come by weekly.
We don't know all of you by name, but you are all making a difference. Thank You!!
Most recently, Hannah's Cans for Cancer helped a family pay for a service for their child that was not covered by insurance. His therapy is helping him learn how to swallow again, so that he will no longer have to have tube feedings. He has now graduated to pureed food, really great progress after not being able to eat anything after months. Some of our other ideas include :
helping Coleman (medulloblastoma) and his family as they come to New York City to try and beat the return of his cancer. Unfortunately, this is his second relapse.

purchasing season tickets to the Science Museum and Boston Aquarium for the children at Spaulding Pediatric Rehabilitation Hospital in Boston where Hannah lived while we were there for radiation. We were able to attend both places courtesy of a donation of tickets (they are both expensive). We would love for the other kids there to have the opportunity to get out when they can and go somewhere fun, it really makes a difference.

more Wii's for Schneider Children's Hospital. We are waiting until their construction and move is complete, since they can't be installed until then. The last time at clinic we saw two kids in the transfusion room playing Wii together, with such big smiles on their faces.

of course more games and crafts for Schneiders-they are always in need of those.

We would welcome your ideas, you can post them here or email! 


Monday, August 11, 2008

It's been a while since my last update, wow! We've been busy with family in town and our trip to Maine.

First, no results yet on Hannah's osteopenia. I plan to call the doctor tomorrow to check on the results.

We had a great time this last week with all the family in town. My sister Sue and her daughter Sydney got here first, then Grandma and Grandpa with Great Grandma came last week, with Uncle Victor. We had a full house with all of us and the two dogs. We did a lot of swimming in the pool, that's for sure. Thursday we all headed up to Bailey Island, Maine for my cousin Jacque's wedding. We had some free time to do some hiking, eating wild blueberries and blackberries, collecting shells and beach glass. We went to the rehearsal dinner lobster bake on Friday night, what a feast! The girls had fun doing some downhill skateboarding (yep, enough to give me a heart attack) and we all had fun eating that great Maine "lobsta". Saturday was the wedding. It was such a beautiful and well planned day. Even the weather cooperated long enough to get everything in. The reception was at a small intimate place, really nice. Then, the dancing started, and we all got up and had fun. It really was a great time.

Here are a few pictures of us on a hike, and at the wedding. Hannah caught the bouquet, boy was she happy about that. The girls really didn't "get" the whole garter thing and Hannah asked why his head was up her dress (ha ha).

Also wanted to mention some of Colby's latest works on youtube, some very interesting work!!

Colby's YouTube Videos

Lots more later too,