Friday, January 30, 2009

January 30th, 2007. Sometimes it seems like just yesterday and sometimes it seems like a lifetime ago. I guess it's a little bit of both.

January 30, 2007. Hannah's date of diagnosis, 2 years ago today. I went back and looked at what I wrote last year on this date, after only 1 year. It was like being there again, living it again. I remember:
9:00am-MRI
1:30pm-Dr. Mercier calls "they found something, go get her now, are you OK?"
4:00pm-Dr. Egnor shows us Hannah's tumor on the computer screen, and all that white stuff on top of the brain-hydrocephalus, not good. Hannah sat there innocently on the exam table, long hair, big brown eyes, Dave and I were looking at the computer screen and hearing the words "tumor" from the neurosurgeon. "She needs surgery, and she needs it right away," is what we were told. "It's probably cancer," is what we were told. I was crying, Dave had his stressed out look on his face, and Hannah was quiet. When Dave asked Dr. Egnor to step out into the hall I remember being so mad that he would discuss this without me, but I came to realize he wanted to talk without Hannah hearing.
Later-I don't know what time we got home but Diane and Tom Graeb brought Colby back to our house, and we stood downstairs and talked and cried with them. Colby and Hannah still didn't know because we really didn't know. Mary called and offered her support, a cancer survivor, that helped a lot. After researching that night we decided to put our trust into Dr. Egnor, a doctor we had just met and only spent about 1/2 hour with. He was going to cut into our daughter's brain and save her life.

January 31, 2007. We check into the ER at Stony Brook hospital. Hannah is put on IV steroids to try and reduce the amount of fluid on her brain. For two days we sit in the Pediatric ICU at Stony Brook with Hannah crying and very upset about the IV in her arm. We wait.

February 2, 2007. Hannah has brain surgery. 6 long hours of waiting and then Dr. Egnor comes out to tell us (in the waiting room full of people) that the surgery went great, and it was most likely desmoplastic medulloblastoma, but we would have to wait a few days for the pathology to confirm. IT WAS CANCER. He was almost correct, it turned out that is was standard risk medulloblastoma, and he took out 100%.

I could go on and on, but the rest as they say, is history and it's all documented here. Sometimes my memory fails, but I can remember almost every detail of the last 2 years. Cancer just sucks, is there any other way to say it? And pediatric cancer, it just seems to add another bad dimension to cancer, striking down the young and innocent. But...

I have learned and grown more in the past two years than I ever thought possible. Our family has bonded, our family has changed and our family has grown more than I ever thought possible. Along with all the evils that cancer has brought into our lives, it has brought just as many positives. It has brought
love
new friends
compassion and caring
giving
understanding
a new perspective
a new appreciation
a new focus
love

Another cancer mother said to me once "in the deck of cancer cards, we drew the lucky card." Our treatment was successful, our complications are minimal (well sometimes) and most importantly, Hannah is still alive. Are we lucky? I don't know, sometimes yes and sometimes no. I know that Hannah is still alive. Are things perfect, are things like they were before? NO, they are not. But, whose life is perfect? No-one I know!

My hope for our future is that continue to try and make a difference in the lives of other children afflicted with cancer. Our perspective on life, and pretty much everything, has changed. I think it's changed for the better. We know now that we live every day like we may not be here tomorrow. Do we always accomplish that? No, but we are more cognizant. We will continue our fight, and the fight against pediatric cancer. One day at a time.
We're here.

♥Kim

Monday, January 26 2009

Since my last post, Hannah visited the neuro-ophthalmologist with good results. He did a rather brief exam and reviewed her past reports from when she was in Boston (2 years ago), and our most recent visit to the ophthalmologist. Hannah was unable to complete the test he wanted her to do. She placed her chin and forehead on the rests and was supposed to press the button when she saw the flash. It was almost like a big bowl facing her, with a small pinpoint in the middle. But, the assistant couldn't adjust the machine correctly and kept telling Hannah to keep her head still. However, the machine was set way too high and Hannah was sitting up as tall as she could, so she couldn't keep her head forward enough. She finally started crying, you could see it coming. They brought in someone else to adjust the machine who immediately made the necessary adjustments and all was good. However, Hannah couldn't keep her head still enough and again, the assistant was moving her head and telling her what NOT to do. Again, Hannah started crying. I said That's it..she's done, we're done with this test.

So, the doctor said there is nothing wrong with her. He didn't agree that she had abberant regeneration of the nerves. He was a bit old and grouchy and not really the kind of doctor who felt he needed to explain himself other than to say "there's nothing wrong with her, it is the way it is." I guess I should take that and be happy with it, but then what is the explanation for the eye issues? We were told for 2 years that Hannah was constipated, that Hannah had migraines, that Hannah was crazy. And guess what, they were all wrong. Hannah had a brain tumor. For 2 years we went from doctor to doctor, and all the while, Hannah was suffering with a brain tumor. We are feeling a bit frustrated now, like we are in another vicious cycle with all of this. Right now, Hannah is dealing with cognitive issues, emotional and aggression issues, stomach problems, nausea problems, eye problems, balance issues, constipation problems, foot drop and leg pains at night.

Ok, I'm done complaining now. Hannah is here, she is tumor free, she is here. Sometimes it's just touch dealing with all of these issues every single day. But will we take that over cancer...any day.

We have a new plan in place to solve her stomach issues which continue to plague her on a daily basis. She is missing quite a bit of school again because of it. Last week she only went to school 1 1/2 days total. We are trying a new combination of medicines to help with both the chemo induced constipation and the stomach pains (which do not seem to be a result of the constipation and may be the result of acid reflux.) That's the plan for now, so we'll try this out and see how it works for her for the next month. Her oncologist said we will work with this right now and "see what the MRI shows." I almost fainted when I heard that, as if it could possibly show something. It's scheduled for February 10th.

♥Kim

Thursday, January 22 2009

It's been a pretty busy week for us. I don't think I mentioned that Hannah went to an ophthalmologist last week. AFter a very thorough exam, he did not find any issues of alarm that would necessitate a rush MRI. Whew, one hurdle down. He did notice that when Hannah looks up, one of her eyes tracks outward, instead of looking directly up. Most likely, her muscles are fighting to direct her eye back to it's normal position. His best explanation was that she may have something called aberrant regeneration. To simplify a bit, Hannah's brain had to regenerate many of it's existing neurological pathways after the surgery and radiation. It is still in the process of that regeneration, however, some of those pathways may not be properly reforming. If this is the case though, there is nothing that can be done. Even after the regeneration is complete, the pathways will remain as they are formed. The eye issue isn't that big of a deal, as long as we know that is what it is, and it isn't tumor related. She has an appointment tomorrow with a neuro ophthalmologist to confirm there are no issues.

But, last night she had another episode that could be neurological related. After she went to bed, she called out screaming and crying that her legs hurt. She said she felt like she had to stretch them. She was straining and straightening her legs and squeezing her hands into fists. I walked her, and talked to her, made her walk and stretched her legs out, tried breathing and visualization with me. I finally gave her Tylenol and rocked her in the rocking chair. She finally calmed down after about 30 minutes. this was so reminiscent of how she was shortly after surgery. I don't think we had the blog then, but shortly after surgery, Hannah had a problem with her legs. We had to constantly move her legs or massage them. We spent hours and hours either bending her legs in and out, or riding her down the hallway on the bike we strapped her feet and body to, just so that she could keep her legs moving. We tried ice, heat, many different kinds of drugs, none that worked. She still had the problem when we went to Boston to start radiation. They finally put her on a drug that was an anti-anxiety medicine, and that slowly subsided the problem over time. I'm hoping this issue is not neurological related, and that it may be just growing pains. She had it again tonight, but not as bad.

The stomach problems continue for Hannah too. Yesterday, she came home from school at noon with a stomach ache. She looked awful. She didn't go to sleep as usual, just relaxed and even did some homework later in the day. Then, with the leg issues, she didn't get to bed until after 10pm. This morning, as I was trying to get her dressed, she started crying that her stomach really hurt and she felt like she was going to throw up. She slept in until 10am, and didn't eat much all day until this evening. I feel like she is missing more school now then while she was on treatment. I have spoken with several doctors today, and we have a new plan for now, which we'll start tomorrow. And, her next MRI is set for February 10th. Dave and I said today that we feel the frustration like we felt before she was diagnosed. We knew something was wrong, but no one could pinpoint it. We working on it....

♥Kim

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