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!

2 Years Today

Today, April, 8th marks the day I found out Hannah has cancer.  This could easily be a very sad day.  Infact, the day before it, April 7th, is the real day, I found out.  Only because that is the day I took her to the ER.  Nothing has ever been the same.  They told me in the night, technically, the 8th, that she had blasts (Leukemia cells) in her blood sample.  I can feel the 7th coming.  I will look at the calender for something routine and see April 7th, staring at me. That day is hard.

Hannah sledding this Spring Break.  Always living life to the fullest!

April 8th, however, is the day the fight began.  We celebrate that day.  Our Hannah Grage, has been kicking cancer's behind for two years today!!! Her opponent is viscous, tricky, and smart.  Hannah is ten million times better.  Today, we toast to our own hero.  I couldn't even begin to tell you what I have watched her endure and I wouldn't want to.  She is tough as nails and I am so, so proud of her.  Earlier in the day, her dad  had a fantastic party for her, with her Nana and Opa there.  They had cake and presents, all the things a celebration needs.  Tonight, Rian and I took her and the crew along with our dear friends Anna, Aiden, and kids to her favorite restaurant to party it up. She got her presents and strawberry margarita (virgin, of course!).  It was a blast. I have some news about her counts that will wait until tomorrow.  Today, we are concentrating on the awesomeness that is our baby girl.

My Baby Girl

Those Disney pictures took a really long time to download. After four months, they are finally in and I can update the blog.  Soo, how has everyone been?  Hee hee. Just kidding.

 Our lives have been a bit hectic since coming home from DisneyWorld. I had foot surgery when we got back and was on crutches for around a month.  The very day I got off crutches a piece of my hot water pipe broke and flooded my house. We moved back into our house February 12th.

However, those pictures have been like a procrastination road block to updating Hannah's blog for me!  Mainly, because my upload speed makes snails look like they are moving at a breakneck pace. Also, because there is so much to tell you all about the trip.  The time to do it justice just couldn't be found.  So, I'm not.  I am going to update the blog with the here and now.  The Make A Wish trip details will have to arrive to the blog randomly as time allows. On to the here and now.

First things first. Doesn't her hair look great?? It is back to her original hair color and growing in thick and pretty.  Not fast enough for her, of course.  She constantly wants me to try and french braid her hair.  Yep. At that length. She is agitated quite quickly at easily given responses like "Oh, baby it is still too short for that", so, I try.  We give up usually after mere moments of trying and instead go for small clips or headbands. For whatever her reasons, she feels better if we attempt it.

School for Hannah is going impressively well.  She got student of the month in January!! She got to except her award in front of the an all school assembly. I am SO proud of her.  She had suffered some damage as a result of the chemo.   Initially, when kindergarten started, she didn't know her alphabet, couldn't write her name, didn't know her numbers, and got Parkinson's like shakes when trying to cut a circle out with scissors.  Now, she is writing her name and many other things.  She loves to write real words and always wants to know how something is spelled.  She is reading small books, is great with math, and can cut paper into a myriad of shapes without a single shake.  Infact, I do believe she is the main culprit in my constantly missing printer paper. 

We are still in the thick of the cancer fight. She has been having some ups and downs with her ANC counts.  At this stage of the game, they like to see her counts steady, between 750 and 1500.  For both November and December her counts were between 4,000 and 5,000. We upped her chemo doses. Some of them to at or a bit above 100%.  That's high. In January, her counts came back down, around 1200.  It was a short lived sigh of relief as February had her counts at over 4,000 again.  We upped her chemo. We go Friday to Children's for a back poke, (chemo in her spinal column) and to check her counts.  I'm not sure what the bouncing counts are from, exactly. They are worrisome altogether and attempting to steal the peace I had gained.  I am trying to remember we are in this for the long, bumpy road.  Crazy counts might just be one of the bumps! Whatever may come, God has a plan and I have to trust.

We Are Back From DisneyWorld!

I have so many photos and stories that I can't wait to share.   We have 129 photos coming from Disney, but it takes two days.  Some of those are amazing.

This is Hannah driving her own car in Tomorrow Land.  She was so cute! She kept saying "My car; I'm driving!"

Hannah Gets A Wish!!

Make A Wish has granted Hannah a wish.  When they asked her what one thing she would want, she didn't even pause.  "To see the princesses!"  She didn't know of Disneyland or Disneyworld, then, she was just four years old when first asked.  MAW decided that would best be done at Disney World.  We get to stay in the Give Kids The World resort, which is set up for MAW kids.  They serve dessert any time, so you can literally have ice cream for breakfast!

Hannah at her Make A Wish Party

We leave Saturday morning for a week in Florida.  Hello sunshine!! The kids and I have never been to Disneyworld and we are SO excited!  I will take a ton of pictures!

The best part is that Hannah's birthday is on Sunday and we get to celebrate it at Disneyworld with her favorite princess!  For Hannah, this is the best thing in the entire world to happen to her.  After the hell on earth this summer's chemo was, it actually makes me tear up thinking of how happy she is going to be.  The Make A Wish people are angels.

School Troubles

Hannah has started Kindergarten! She was so excited! Big kid school like her brothers. Finally, getting to play with little kids again. There was so much talk about what friends she would have and if she could invite friends for sleep overs. I was struggling a bit with having my baby go to school. I now have all school age children. Weird.

Hannah's hair has grown in so much in such a short time. I think it looks like an adorable pixie cut. It has also grown a different color! It is far lighter. She used to have hair so dark brown that is sometimes looked black. Now, she seems to have a light ash brown color.

Unfortunately, for Hannah, what the kids at school noticed most was, she has very short hair. She was coming home every day telling me of something else a child had either done and said to her that was hurtful or mean. The chants of "Look, it's a boy in a dress" hurt the most. Luckily, the teacher we have this year, is just fantastic. She has been very helpful. Hannah is learning to trust her, that if she tells, it can be made better. I called the Leukemia & Lymphoma Society and they sent an information packet with a Charlie Brown video for the kids to watch.

We watched the video in class with the kids. It was short but effective. In the video you see a little girl discover she has leukemia. When she is able to come back to school, she is bald. A boy on the playground starts making fun of her and the other children come to her aid.

We had a discussion afterward where the kids could ask questions. I was so pleased to see what an impact the show had made. There where lots of questions about why hair falls out. One boy raised his hand to tell me, he thought the mean boy in the video was a bully. That got other kids asking why someone would do that. This gave me a chance to tell them how some people react to new or different things by making fun of it. I explained that it is important to think about how someone might feel about the things you say or do to them. That same little boy ( thank god for this kid!) said, "Just like when the kids tease Hannah?". After I responded, yes just like that, he looked around the room and said "Well, I hope they don't do that anymore!" Ahem!

This was just last week, so I will have to wait and see if this was enough to help. Hannah does have a some friends in class regardless of the other issues and hopefully now, a little more understanding.