Hannah Grage: May 2012

Tuesday, May 22, 2012

Wonderful Family; Extremely Rare Condition

http://www.giveforward.com/casenpcifund

CJ Buswell, is a guy I have known for years now. He works for one of my customers and is the nicest guy you could meet. Every time I would see him, he would ask how Hannah was doing. He has a daughter near to her age.

I remember hearing that he and his wife were having another baby. I was so excited for them. Just 12 weeks ago they had a beautiful baby boy named, Casen. They knew right away something was wrong.

Their gorgeous baby had a cluster of very obvious blood vessels around his chest. After months of agonizing trips to Children's with very puzzled doctors, they found out why.

Casen suffers from a rare condition known as Plaque Type Glomuvenous Malformations, which is caused by a missing gene. He is only one of 14 people in the world to have it.

Doctors here don't even know how to treat it. There is a doctor in Belgium with some experience and they are hoping to get there.

I am posting a link to a fund raising web site. It also has updates on how Casen is doing, as well as a better explanation of his condition.

CJ and his wife Jenna are wonderful people. If you can help, please do.

Pesky Blood Counts

It is now May, and we are still struggling with blood counts (ANC) that are too high. Hannah has been running about 2000 too high for several months. Her doctors keep increasing her chemo amounts trying to bring that number back down.

Last month, Hannah had a bit of a break through, in that her ANC came down 1000, but with still a 1000 to go. For us, that was great news because it meant we didn't need to increase her chemo again. She is already on over 100 % dosing for all her different chemo medications. She suffers so much with the nausea. I just couldn't imagine giving her even more.

At Children's, waiting for labs.

We also, got some good news in April about her liver. We found out in March, that her liver was starting to under perform. Hannah's lab work showed a liver function number that was much higher than it should be. Liver issues make giving chemo difficult. We need that to kill the cancer! So, I was worried. However, at her check up in April, her liver function numbers had gone back down to normal. Definite improvement! Her next check is June, 1st. I am very hopeful that the downward trend of counts, continues!

How we got Cancer

I have two amazing, handsome, sweet, funny boys, Andrew, 13 and Aaron, 8 years old. After years of thinking I would never know what ballet lessons were like, I also had Hannah. She is four years old. My three kids are all I could ask for and more.

In January, Hannah had pneumonia. She never seemed like herself after that. She had random fevers, she was tired often, and her coloring was off. I kept taking her to the doctor thinking she had a virus or something but it never got all the way better. The people at her preschool were also noticing these symptoms. The director of her preschool, Deb, had even called me, thinking maybe she had mono. The doctors thought maybe it was a sinus infection and put her on medicine.

On April 7th, 2010 she had a tummy ache at school, when I came to get her, she seemed ok. As I was reading her bedtime story that night I noticed her stomach looked VERY distended. I thought, in all my thirteen years of parenting, I had not seen that before. I called her doctor and the nurse asked me how quickly I could be at Children's. Rian stayed with the boys and I left the house still not convinced I wasn't over reacting to some possible gas.

I should have known something was not right at the ER, because everyone was being really, really nice to Hannah and I. After they drew some blood the doctor came in and told Hannah that a nurse would stay with her so that Mommy could get her some juice. I walked out of the room really thinking I was being led to where the juice boxes were! They took me into another room where the doctor turned to me and said, "We are going to do a test, the results will be back in an hour, but we think your daughter has Leukemia. We believe she has cancer." I was busy dismissing her in my head as the over reacting one while she listed the symptoms Hannah displayed that made her suspect it. Her stomach was distended and not because of gas. Her liver and spleen were enlarged. Her frequent fevers and fatigue. My brain kicked in at this point, so I protested, suggesting that mono, could also be the cause of enlarged organs, fatigue, and fever. She agreed but firmly stated she thought it was Leukemia. I went back to our room, no juice, refusing to except any of that. Every time I thought, what if they come in and tell me it's cancer, I immediatly put it out of my head. I was sure it was going to be mono.

After the longest hour ever went by, Hannah had fallen asleep on my lap and the doctor came back in. She said she was afraid she had bad news. They rest of that night has blurred into the rush of trying to process the wall of information they give you and surpress the "I'm going to go crazy right here" emotion that was filling my head. I was determined not to be the mom that fell apart. I just wanted to learn so I could help.

My best friend, Mackenzie, at nine months pregnant, thank you very much, came to the hospital at 3 am with only the words, Hannah has Leukemia. Together, we walked Hannah into her new world called, the 3rd Floor Cancer Unit at Children's Hospital. Walking in past that sign and knowing that was where they were taking my sweet baby girl was one of the single worst moments of my life. I almost lost it, except, Abby, our fellow(thats an important Dr. title) was standing there waiting for us. I had stubbornly, already promised myself I wasn't going to be breaking down in front of the people that I am now depending on to save Hannah's life.

The next few days were full of horrific tests and information. When they came back with the spinal tap results that showed the type of Leukemia she had, I did finally lose it. She has Leukemia ALL, which is the one with the highest cure rate. So, it was good news. I don't know why, but to me it meant that she really did have cancer. I went into the hall, sat on the floor, and cried my eyes out. I just couldn't stop. I had been feeling like if we just left, if I picked up Hannah and ran, then none of this would be real.

What I found out, was that we are going to be ok, that there are funny, dear moments even when going through crappy chemo, and that we have a whole LOT of wonderful people in our lives. I thank God everyday for all of you and every precious moment I have on this earth with my family.

Hannah Grage

Favorite Hannah Picture

Hannah Ballerina

Play Time

Hannah's Room

Happier Hannah

Hannah sleeping 4-13-10

Preschool Friend's Art

Tuesday, May 22, 2012

Wonderful Family; Extremely Rare Condition

Pesky Blood Counts

Hannah's Buttons!

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How we got Cancer