Welcome

to Hannah's blog. Hannah, a happy healthy 7 year old was diagnosed on January 30, 2007 with medulloblastoma, a malignant brain tumor.

It's new

I know it's new, and lots of junk still here, but it's a new template I'm trying out. Still lots of work to do, we'll see!!

Sunday, January 18, 2009

Today Dave and I attended Jacob's memorial service in NYC. Our friend Amy, Alec's mom, made the trip in with us and it was nice to have her along. The day seems somewhat of a blur to me, so I can't imagine how Nancy and Michael and the rest of Jacob's family feel right now.

Their family is Jewish, and we had never been to a Jewish service so we didn't know exactly what to expect. The service was at the JCC in the city. There were so many people that we all couldn't fit in their auditorium. Nancy spoke first, how she made that speech I don't know. She was calm and composed in true "Nancy" fashion.

I will never forget the first time I saw Nancy, her husband Michael and her parents. They were in the cafeteria next to the hospital in Boston where both Hannah and Jacob had radiation. Dave and I were there with Hannah trying to coax her into eating, and as we walked out they called us over. We knew that they must be the new family in town for radiation. It was Jacob's first day. I'll never forget how "together" they looked. I knew how they were feeling on the inside, but on the outside, they looked like they were enjoying a normal family lunch.

Hannah was in her wheelchair that day, the big clunky version with the headrest. Nancy spoke directly to her, which so many adults were afraid to do. Nancy spoke to Hannah first, the most important person there for that moment. I still remember that. Today Nancy spoke directly to Jacob and about Jacob. Nancy spoke not only to us, but to Ben, Jacob's little brother who is only 8 years old. Ben and Jacob were brothers and best friends. Each family member spoke about their fondest memories of Jacob. About their weekend bake sales in the city, about Jacob's interests, his strengths and his courage. I think the strong and courageous ones there today were his family. The rest of us were there to show our support and our love for them but in reality they supported us. We are grieving with them.

It just breaks your heart, so many children out there without their brother or their sister because they died of cancer. As Peggy says, we can't pretend to know God's will in all of this tragedy, we just have to offer ourselves up to his plan. As Jacob's father Michael said, when your parent dies, you are an orphan. When your spouse dies, you are a widow. But, there is no word for you when your child dies except heartbroken. Tonight, our hearts are broken too.

Kim

Saturday, January 17, 2009

A few new things to report, but more pressing news right now. Sad news. With heavy heart, we tell you that our friend and fellow cancer warrior Jacob has lost his battle with medulloblastoma.

We met Jacob and his family when Hannah was at Spaulding Rehabilitation Hospital in Boston while having her radiation treatments. We had heard that another family was arriving, a boy 9 years old from Manhattan, a fellow Yankee fan. Yankee fans were pretty sparse in the heart of Red Sox territory, so it was good to have an ally.

I remember thinking that we could possibly help their family feel comfortable and find their way since we had arrived first. I think I even wrote about it on the blog. Boy was I wrong, but in a good way. Jacob arrived and hit the ground running. His family was very in tune with what was going on, they didn't need support, they seemed to have it all together! His mom, Nancy, quickly became a friend. She showed me the ropes of all the online parents groups and research avenues. I learned right away that Nancy her stuff together.

Jacob was a bit more critical than Hannah when he arrived at Spaulding. He had already started chemotherapy, and was in the throes of posterior fossa syndrome, which Hannah had experienced also. Besides dealing with radiation like Hannah, Jacob had to deal with radiation and chemotherapy at the same time. Jacob's cancer was identified after it had already metastasized to his spine so he required more aggressive treatment. He was considered high risk, in contrast to Hannah's standard risk diagnosis. Regardless, Jacob had such an endearing personality. For those who got to know him, he had such a wit! His sense of humor was pretty dry, and totally in tack, even in his situation. He was a bit older than Hannah, he was a boy, he wore an eye patch and he didn't talk much. At this point Hannah was shying away from everyone, but she could relate to Jacob, the "Yankee friend next door" and his little brother "Ben." Jacob and his family introduced Hannah and I to our first Chinese noodles and shrimp when our families dined together one night. Jacob and Hannah didn't talk much, but they did eat, and that was always a good thing in those days. Hannah still likes Chinese shrimp and broccoli.

Jacob's mom Nancy has worked endlessly to manage his care and help him beat his cancer. I have learned so much from her. She is so smart, resourceful, tireless, inventive and such a good mom to Jacob. Nancy could research better than anyone I have ever seen. If there was a treatment to be found, Nancy would have found one. She has spoken with doctors in Serbia, India, Germany and all over the United States. She pushed Jacob's doctors to work outside the box and find new ways to help Jacob. I believe that she helped extend his life, and his quality of life more than he would have had otherwise. And you should hear what she has planned for the future. She is someone who acts quickly and decisively, and I know that any future project she sets her mind to, she will be successful.

If you have a moment, please take it and visit their website to offer than a word of condolence. Another brave warrior that fought hard and lost his battle. We will be celebrating his life tomorrow in NYC with his family. Our friends...

Jacob's website


Kim



Monday, January 12, 2009

Thank you Colby for the update on the lacrosse game in the messages here. Colby forgot to mention that she spent most of the game on the bench sick! This weekend she has another opportunity, they have a double header.

Another Coleman video to share, it's a video that Peggy prepared for Coleman's celebration of life on Saturday. I was thinking of them all morning, so wish I could have been there with them.



Kim

Monday, January 12, 2009

Here you go Dad, new picture,

Kim

Sunday, January 10, 2009

Seems like the weekend flew by, even though it hasn't been an easy one. We thought a lot about Coleman and his family this weekend. We also have another very close friend who is losing his battle with medulloblastoma, it's heartbreaking.

We had our own scare this weekend, spending Saturday afternoon in the ER at Stony Brook. On our way to Colby's first lacrosse game this weekend, Hannah out of the blue said that she was having trouble looking up. She said it didn't hurt, but she felt like when she looked up her eyes were being pushed down by pressure. I just looked at Dave as he looked over at me in the car as I said I was calling the doctor. One of the key symptoms of hydrocephalus (fluid on the brain) is known as Sundowners Syndrome-where you can't look up. Hannah could move her eyes up, but said it was uncomfortable. She didn't have any other symptoms-headache, blurry vision, unsteady gait.

I called the on call doctor in oncology at Schneider's and also her neurosurgeon's on call doctor (at Stony Brook, where Hannah had her brain surgery.) I got the neurosurgeon first, who said though it didn't sound immediate, they wanted us to come in for a CAT scan to check. Schneider's said the same thing. Also, it was just beginning to snow and we didn't want to be stuck in a storm if anything got worse. We dropped off Colby and Dave at lacrosse and continued on to the ER. I called my friend Amy, Alec's mom, who said that the last time Alec had hydrocephalus, he could raise his eyes also, but he had a headache. She did give us a good tip though-tell the ER that Hannah is immunosuppressed so we could speed through the ER. Many thanks to Amy-that worked like a charm. They gave us a mask and put us into a room right away.

All was speeding along, until we came to the first roadblock-the dreaded IV. I had told Hannah that she didn't have to have any pokes, no needles. Well, I shouldn't have promised that, they wanted to draw blood to rule out any type of infection, including meningitis. Not only did they have to draw blood, but they had to leave the IV in, which really made Hannah mad. She said NO, she wasn't letting them put it in. I had to make quite a deal with her to get by this roadblock-it was dinner and 2 stores of her choice at the mall. She let them put it in, but the nurse wasn't an expert, it hurt just to look at it. They drew blood, then took us down to CT fairly quickly. A CAT scan takes all of about 45 seconds, and we went back up into the room. By this time Dave showed up to wait with us.

Second roadblock-they wouldn't take the IV out until they had confirmed no infections, and a clear CAT scan. After about an hour they did come in to tell us no infection and the scan was clear. But, neurosurgery had to also view the scans and they had an emergency. They didn't want to remove the IV until after neurosurgery had cleared the scan, just in case. After about another hour and a half with Hannah rolling around and crying that SHE WANTED THAT IV OUT and WHY WASN'T I GETTING ANYONE TO PULL IT? I finally went out and told them to come in and take it out. They reminded me that there was a possibility that it would have to go back in if anything was found. I told them if we had to put it back in due to a problem, that would be the least of my worries. They came in right away and about 10 minutes later, neurosurgery arrived. They had taken the time to review her scans against her old scans they had on file. They said there was absolutely no problem with this CT, it looked much better as far as size of the ventricles, and no fluid at all.

So after much angst and quite a bit of time spent in the hospital we were thankful that all is ok. I don't even think we were emotionally prepared for a possible bad outcome. The two biggest possibilities were blockage of the ventriculostomy, the hole drilled in the 3rd ventricle to allow the fluid to properly drain from the brain, since Hannah's brain was not properly absorbing it's own fluid after her initial surgery. The doctor wanted to try this procedure so that Hannah didn't have to have a mechanical shunt put in. However, there is a chance that the ventriculostomy will stop working and have to be redone at some time. We hope this never happens of course. But, even worse than that, was the possibility of tumor regrowth, which could have been causing the hydrocephalus. Obviously very bad too.

Thank goodness that neither occurred and even though we don't have an explanation for it, we know it's not something threatening. We are counting our blessings. Today, she says her eyes are back to normal. I wish I could report that her stomach is back to normal, but lots of problems with that too. Poor thing!

Kim

Wednesday, January 8, 2009

Hannah went to clinic yesterday for her regular checkup. All of her counts now, except her white cell count are within normal levels, which is good to see. Hannah has been doing better since we started her on the exlax, but we are still trying to get the dosage right, sometimes the medicine itself gives her stomach pain, which is usually relieved after she makes a trip to the bathroom.

Yesterday though, she started having stomach pains on the way into the hospital. By the time we got there, she really wasn't feeling that well at all. By the time we got to see the doctor and got into his office, she was crying She said her eyes just wouldn't stop watering. I hadn't seen her with a stomach like that in a while, well at least since before Christmas. It lasted for a while and then we stopped on the way home so she could visit the bathroom, and then she seemed better and ate some lunch (our tradition after clinic now is Olive Garden.)

This morning she woke up and didn't feel very well. She ate only 2 crackers on the way to school. I got a call at 11:30 this morning from the nurse, she had not eaten snack and now was not eating lunch. Hannah told me that whenever she put food in her mouth, she felt like she was going to throw up. She came home and then slept until 4:30 this afternoon. Usually after that long, she feels better, eats a bunch and all is well. Not today, she just kept saying she didn't feel very well. She finally had a popsicle, then a small bit of popcorn at 9pm. She said she felt a little better, but still had a stomach ache. There is a bad stomach sickness going around at the school and many people have it. I'm wondering if this is a touch of that. We'll see how she is doing tomorrow. Here she is with her popsicle and her guard dog.

I had a lot of hopes for this exlax to finally give her some relief from these stomach aches that she has had for over a year now. I hope she is still on that path of recovery and that this is just a bump in the road for her.

Many have been asking about Coleman, so I thought I would cut and paste his mom Peggy's words last posted on Coleman's site. She is one special person. Be sure and watch the video at the end, I just can't believe he's gone.

Kim


Today the world may have cried a river of tears for a little boy’s life that ended way too soon, but we believe Heaven is REJOYCING over Coleman’s job well done.


Coleman was an amazing child of God and we were so honored to be chosen as his parents.

He left this world at 10:45 last night- he fought HARD until the very end, not wanting to give up, but finally letting go. He was a warrior and a hero our hearts will forever miss. We had the most glorious five years together- a gift we will never forget.

A quick story. :)

One day Coleman heard someone say they were mad at God. He didn’t say a word, but later came to me with this complete look of disbelief on his face and asked, “mommy? did you hear them say they were mad at DOD? WHY would they say that?” He couldn’t even fathom the thought. Then he raised his little eyebrows and said, “well, I hope they don’t say that in PUB-WIC (public)!” and walked away. He knew there were some things he could not change, but HIS faith never wavered.

Lots of people have mentioned their anger toward God …how can He let this happen when so many people have been praying for Coleman? Why didn’t he answer our prayers?

I just can’t be angry at Our God who sent Coleman to us in the first place. Coleman was a child of God, WE were chosen to be his parents- and how blessed we were. Maybe my feelings will change, but like Coleman, I can’t imagine being angry at God. Would we have loved to have had more time with Coleman? YES! I want him back right now, but I know that’s the selfish part of me talking. I know I will hurt more than I can ever imagine in missing him…and I know I will have MANY days of heartache and anger, but my anger is over the fact we live in a world where we can do so much, but still do not have a cure for this horrific disease. Children are paying the price for that. More on that will come-

I guess what I’m saying is I know for a fact, Coleman would NOT want us to be mad at God. He taught us so much in his time here. His lessons will go on for a very long time. He knew where he came from and he knew where he was going. My heart aches for more time, but I’m SO thankful for the time we got with him, and we know we WILL be with him again. God doesn’t always answer our prayers in the way we want him to…HIS ways are not ours, and that’s hard to accept, but true. It doesn’t mean I don’t question it- it’s hard to understand, but one day we WILL know.

Many people have asked how Caden is doing. Now that’s a long story, but we have assured him that we love him. He is dealing the best way he can- just like us.

I turned my desk Praying Parent calendar today, and thought I’d share what it said…
“We are dependent on God to enable us to raise our child properly, and He will see to it that our child’s life is blessed. One thing I have learned is that I should not try to force my own will on my child in prayer. I have found it is better to pray more along the lines of “Lord show me how to pray for this child. Help me to raise him Your way, and may Your will be done in his life.”
I believe God’s will was done through Coleman. I know it.

For those inquiring:
We will celebrate Coleman’s life on Saturday, Jan. 10th at 10:30 a.m. at Our Saviour’s Lutheran Church in Callender. Visitation will also be at the church on Friday the 9th after 4:00p.m.

Instead of flowers, we’d love donations made to
The Hospice House of Fort Dodge, Iowa
The Ronald McDonald House of Iowa City
or curesearch.org

We’d like to thank EVERYONE who has helped our family along this journey the past two and a half years. We will never be able to explain how much we appreciate the support for our Team. Our carepage family is the BEST!
To the hospice house- you will always have a special place in our hearts. You made the most difficult time of our lives one filled with love. Nadine and your staff, God bless you. I know Coleman would like us to thank you as well for making his last days as comfortable as possible for him- and for us all.

Here is one of my favorite pictures of Coleman…


God bless you baby. Coleman said long ago, "some day I won't need NO more meds or pokes, wight mommy?” No more sweetie. You are free.

One more story to share…thanks again Nadine.
The Parable of the Twins-


Once upon a time, twin boys were conceived in the same womb. Weeks passed and the twins developed. As their awareness grew, they laughed for joy, “isn’t it great that we were conceived? Isn’t it great to be alive?”
Together the twins explored their world. When they found their mother’s cord that gave them life, they sang for joy, “how great is our Mother’s love, that she shares her own life with us!”
As weeks stretched into months, the twins noticed how much each was changing. “what does it mean?” asked the one. “It means that our stay in this world is drawing to an end, said the other. “But I don’t want to go”, said the other, “but maybe there is life after birth.” But how can there be?” responded the other one. “We will shed our life cord, and how is life possible without it? Besides, we have seen evidence that others were here before us and none of them have returned to tell us that there is life after birth. No, this is the end.”
And so the one fell into deep despair, saying, “If conception ends in birth, what is the purpose of life in the womb? It is meaningless! Maybe there is no mother after all?” “But there has to be,” protested the other. “How else did we get here? How do we remain alive?”
How you ever seen our mother?” said one. “Maybe she lives only in our minds. Maybe we made her up because the idea made us feel good?”
And so the last days in the womb were filled with deep questioning and fear. Finally, the moment of birth arrived. When the twins had passed from their world, they opened their eyes and cried for joy. For what they saw exceeded their fondest dreams.
Author Unknown

OH OH OH I have to say too-
Dr. Woods from Des Moines and Dr. Gilheeney from NY who called us personally- GOD BLESS YOU! Our world needs more doctors like you. It means so much to us. We will never forget your compassion. Thank you.

Blessings to you all,
Nev-va Div up-
Team Larson

UTUBE is going to pull this video because of the song used, so I thought I'd try to post it and see if it's still viewable...Cman and his bunny foo-foo. That bunny helped him through many hard times, and he still twirled the ribbon even on the high doses of morphine. This is Cman's second bunny after he lost his beloved first. A story of LOVE...

Tuesday, January 6, 2009

It is with a heavy heart that I post that our friend Coleman Larson has died. He passed away last night, just barely 5 years old, at 10:45pm. No more meds or pokes as his mom says, he is free...

Visit Coleman

Kim

Sunday, January 4, 2009

We made it home from Indiana, it's cold here too! We really had a good time, it was nice being away, none of the stress of where to be, or what to clean or wash or put away. I did get a BIG surprise when we got home, Dave had taken down the tree, including putting away all the ornaments (there are A LOT) and put away almost all of the decorations (did I mention there are A LOT). Wow, it was great! Tomorrow it's back to the grind, school and work starts.

I have been meaning to update on quite a few things, so I'll try to consolidate it here. Here is a health update for everyone-

Dave-back is still bad, but he is still acting like he can live with it. Really no other new information.

Kim-the iv line is out of my arm, came out in early December. I think the doctor wanted to try for one more month of iv meds, but not only would the insurance not cover it, but I couldn't stand it anymore. It's a big relief having it out. The doctor did put me on oral meds for a month,  as an added protection that the lyme won't come back. The medicine really started giving me a lot of problems, so we changed it over the holiday to a different one. This one seems to be much better, at least on my stomach. 

Colby-All is good. She is busy playing basketball, lacrosse and horse back riding, along with a few other activities. 

Hannah-Well it's been up and down. Poor thing threw up on the way to the airport on our way to Indiana. 4:30 in the morning and Hannah is on the side of the road in the dark throwing up. I told her she was melting the snow, but she didn't that was too funny at the time. She also threw up the morning we came back home. We were all in the car getting ready to pull out of the garage and she yells that she had to get out to throw up. I know now not to question, just to run, which we did. She also threw up once when we were there. 

Before Christmas she started missing school quite a bit, or coming home early. Her stomach bothers her every day, especially in the morning, sometimes escalating to the point of a trip to the nurse for me to come and get her from school. I have mentioned this several times to Hannah's oncologist, but my response was always "this is common in medullo patients, we have kids on anti-nausea meds for years after treatment." We did try Zantac to help with acid in the stomach, but that didn't make a difference. 

A friend and fellow cancer mom mentioned Hannah to her son's oncologist. The doctor's first response was that it could be vincristine (one of the chemo drugs Hannah had) toxicity. To put it simply, vincristine causes neurological deficits so that the bowel doesn't work properly. This, in turn causes constipation, which causes the stomach aches. 

The oncologist asked if Hannah had any other vincristine effects, which she does. One of the other side effects she has is foot drop. It's not significant enough that she trips, but she doesn't lift and lower her feet properly when she walks. I have been noticing it more lately, especially when she is in a hurry. She slaps her feet down flat-footed when she walks and runs. This is a neurological disorder caused by the drug. To be fair, Hannah's oncologist most likely didn't catch it because we didn't mention it earlier, and she never walks very far in his office when performing the neurological tests at each office visit.

So, after hearing this from an oncologist that has never even met Hannah, I contacted Hannah's doctor and mentioned the issue. He was skeptical, but agreed to monitor her before recommending treatment. A day later we had our answer and he started Hannah on ExLax! It worked a bit too well at first, so I didn't give it to her anymore, and she started having stomach aches again very quickly. She is back on a lower dose now, and she is doing so much better. She does complain of periodic stomach aches, but very infrequently. 

I just can't believe that after more than a year of stomach pain, that a doctor at another hospital diagnosed Hannah so easily. I have to say that I'm pretty disappointed in the survivor care at Schneider's. They are so very busy with the current patients and overwhelming influx of new cancer patients that they lose sight of the kids that survive, but are still having issues which compromise their daily quality of life. I know that other hospitals offer comprehensive survivor programs which include psychological counseling, medical assistance and a well rounded, all inclusive program. I know that NYU Hospital is currently establishing a new center designed specifically to address kids that have survived cancer. Many hospitals are just now realizing that more kids are surviving cancer as the survival rates go up and there is a need to help these kids. 

Of course we wish that now that Hannah is a cancer survivor that things are over and done with and everything goes back to normal. If only that were true. Things are far from how they were. Our lives were changed, some for good, some for bad, on January 31, 2007 when she was diagnosed. 

I think that's probably enough stuff to overwhelm you all with tonight. We had a great Christmas and a very fun New Year (pictures later) in Indiana. We're counting on a healthy 2009!

Prayers go out to our friend Coleman from Iowa, he was airlifted on Christmas Day when he couldn't talk or swallow. They found two new spots on his brain, just devastating. He came home about a week later on hospice to try and make him comfortable, but he is now back in a hospice home. Please keep him and his family in your prayers, they are remarkable people...Coleman

Kim

December 31, 1008

My last post of the year...

HAPPY NEW YEAR!!

May 2009 be happy and healthy for all of you.

With love,
the Prokops (still cold in Indiana)

Thursday, December 25, 2008

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

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

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

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

MIMI'S CHRISTMAS VIDEO


Kim

Saturday, December 20, 2008

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

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

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

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

Kim

Thursday, December 18, 2008

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

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

Pictures of us preparing the night before and from yesterday:




















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

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

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

Kim






Sunday, December 14, 2008

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

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

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

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

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


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

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

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

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

Kim











Monday, December 8, 2008

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

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

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

Kim

Friday, December 5, 2008

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

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

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

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

Kim


Toy Drive

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

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

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

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


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

Tuesday, December 2, 2008

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



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

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

Kim


Toy Drive

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

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

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

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


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

Monday, December 1, 2008

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

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

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

Kim




Toy Drive

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


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

Sunday, November 30, 2008

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

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

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

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

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

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

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

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

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


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

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


Kim


Thursday, November 27, 2008

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

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

Kim

Tuesday, November 25, 2008

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

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

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

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

Kim


 

different paths

college campus lawn

wires in front of sky

aerial perspective

clouds

clouds over the highway

The Poultney Inn

apartment for rent