Hannah Grage: D.I. is Rough

Saturday, October 23, 2010

D.I. is Rough

This has been a very difficult week for us. The chemo cocktail she is on has really worn her out. My very active little girl is now napping twice a day, slurs her words, and wants to sit with a warm blanket most of the day. Her doctors say we just push through. I know they are right. It is hard to watch.

Next week, if her ANC is above 750 she will start the second half a DI. She is almost always delayed two weeks when she starts a new chemo. If she does make it on Friday, then Saturday will start the four in a row Ara C and Cyclophosphamide appointments, followed by a back poke. These particular chemo drugs are given through IV over 4-6 hours each day. Again, long time to be stuck in a chair, but we do have the new princess DVD player! It's the small things, right?

Last weekend was a two day party. Saturday, was Aiden's third birthday and subsequent party. Sunday, was Hannah's big five year old birthday party. Over those two days, I got some of the cutest pictures. I'm sure I will fit them all in at some point. Today, I am just going to share my favorite picture from the weekend.

Grandpa Jim (or Norm), the greatest bday present ever, and Andrew.

8 comments:

StefOctober 23, 2010 at 1:04 PM
oh, man... that sounds rough :( Poor Hannah! I wonder if Rachel should come visit her with her new Beauty and the Beast DVD :) It was pretty exciting in our house, when news spread that Disney had taken it out of the vault :)

Seriously, I would like to come visit, if at all possible. I know we'd need to be 100% healthy, which is tough these days, but we can try.

Email me sometime, when you have time.
stef@jastef.net
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MugdhaOctober 24, 2010 at 1:57 AM
Aww, poor thing. She's such a trooper for pushing through this! As are you! I was wondering if you've heard of Andrew McMahon? He's the lead singer of Jack's Mannequin and he also had ALL and recovered fully. Give "The Glass Passenger" album a listen if you get a chance. There's some beautiful and inspiring songs on it!
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CarrieOctober 25, 2010 at 6:45 AM
Stef, I will email you this morning. As soon as her ANC is higher, we would love to visit. Auntie Mackenzie got Hannah that movie for her bday. She loves it too! There is a nurse we love who sounds like Mrs. Potts.
Mugdha, I had not heard of Andrew McMahon. I will have to listen to that album! Hannah looked at your fashion post with me the other day and says "Oh, she is Pretty!" Followed, of course, by asking me to buy her your boots. I gotta stop letting her look at the computer with me! ;-)
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JenOctober 25, 2010 at 9:00 AM
Man Carrie I can't imagine! just having Luke in the hospital hooked up to and IV for 3 days was enough to make me go insane. You are such a strong mom,It is so hard to watch your little one in pain and scared when there is nothing you can do! keep up the strength and courage....Your amazing!Praying for you all and tell Andrew hello for me!!!!
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AnonymousOctober 25, 2010 at 1:59 PM
Hang in there Hannah! You are such a trooper. I hope the treatments go as smoothly as possible this week. Thinking of you. Kathy
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dusty earth motherOctober 25, 2010 at 7:26 PM
Sweet Hannah, I think of you often. Do you know how much your mama loves you and how blessed you are to have her? I bet you do :-)
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CarrieOctober 26, 2010 at 5:36 AM
Hi Jen! I'm so sorry about Luke. What happened? Thanks for the prayers. I will tell Andrew.

Kathy, we got to get the girls together! Should her ANC be up we will be at Children's most the weekend. Maybe you guys could visit? I will call, sometimes hospitals freak kids out. :-)
Thanks, Shari! That is nice of you. This has been the hardest week to be the mom. I must cry every night. My baby is in so much pain. She stays so happy through it though. Big sigh. Stupid cancer.
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AnonymousOctober 26, 2010 at 1:42 PM
Hugs Carrie.....

Liz
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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

Saturday, October 23, 2010

D.I. is Rough

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