Hannah's Test Site

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

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

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

Here you go Dad, new picture,

♥Kim

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

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.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.

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

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.

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

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