Saturday, May 29, 2010

She's Perfect

Yesterday was Kristen's weekly clinic appointment. She had a much better week so I was expecting some good blood counts and good blood counts she had. Her numbers looked great.
In fact her nurse practitioner said,
"she's perfect."
I already knew that.

Here's the deal with her bone marrow results from last week. We were hoping that she would be 100% doner, which means that her brothers bone marrow has completely taken over and her bone marrow is gone. We didn't get the 100% we were hoping for. Her bone marrow came in at 95% donor and 5% her own. That means that we have to worry about that 5% wanting to make those disgusting leukemia cells.
But wait... Now we begin to taper her immunosuppressant drugs, hopefully this will allow her brothers bone marrow to explode and wipe hers out. So we still have a chance at the 100%. That being said, now as we taper the drugs, Graft verses Host Disease (GVHD) has a chance of showing up. So we are on high alert and watching for signs. I understand that if she has problems with GVHD she will be hospitalized until the docs can get things under control. A little GVHD is kinda good, because it will also fight any leukemia cells that choose to make an appearance. So the next few months will be interesting.

Usually on Memorial Weekend we spend time with my parents going to several cemeteries, some a couple of hours away and placing flowers on the graves of grandparents.
This year things are different.
Instead of spending the weekend with my father, we are decorating his grave. I was thankful that Kristen was feeling well enough to go out for a couple of hours today.




Monday, May 24, 2010

A much needed better day

After a horrible week, Kristen seems to be feeling a bit better. Yesterday I was able to get her out for a while, I took her to grandma's house for dinner. I may have wore her out a little as today she is pretty quiet and just wants to rest. Her cyclosporine level was too high which may have contributed to the dizzy spells she was having last week. Today she was cutting some paper and I felt bad as her little hand was still shaking and she could hardly cut. Hopefully, as we taper her drugs, the shakes will go away. Now we are praying that her brothers bone marrow will continue to crowd out her own. She still has some of her own present which is not the best news as we already know what her bone marrow wants to do.

Kristen and her nieces and nephew
Kris and 2 of her sisters. Katy (in the middle) is going to have a baby in July, Kristen is very excited. I can hardly believe this...Katy invited Kristen to hold her hand while the baby is born.
I'm still thinking about that idea. Kristen couldn't be more excited, so i guess we'll see.


Friday, May 21, 2010

Finally some results....


It's been a long week waiting for the results from Kristen's bone marrow biopsy. Finally the results are in and they are not exactly what we were hoping for. Hopefully as we begin to taper her immunosuppressant drugs, things will come together for her good. Kristen has not been feeling well this past week. She is extremely tired and worn. She has had a few incidents where she feels light headed and dizzy. She also gets chills and begins to shake. Not fun, not fun at all. I do believe we have had enough. We'll continue to go forward the only way we know how, one foot in front of the other and moment by moment.

Another cancer mom, Stephanie, has recently reminded us, using one of her favorite songs, to keep our chin up, a reminder I needed, especially this week. Here are the words, 
I really recommend that you  click here to hear the song to get the full effect.

Chin up, chin up
Everybody loves a happy face
Wear it, share it
It'll brighten up the darkest place
Twinkle, sparkle
Let a little sunshine in
You'll be on the right side
Looking at the bright side
Up with your chinny chin chin…

Chin up, chin up
Put a little laughter in your eyes
Brave it, save it
Even though you're feeling otherwise
Rise up, wise up
Make a little smile begin
You'll be happy hearted
Once you get it started
Up with your chinny chin chin!

Chin down, you can't come frowning
Turn around
Starting, clowning
Think sad
Your troubles double
Think glad
They burst like bubbles

Chin up, chin up
Every little time your spirits wilt
Chin up, chin up
Give your attitude an upward tilt
Twinkle, sparkle
Make a little fun begin
You'll be on the right side
Looking at the bright side
Up with your chinny chin
Chin up!

Saturday, May 15, 2010

Last Chemo!

Yesterday Kristen finished what should be her LAST chemo. She's feeling it today. Her back is sore and she just plain feels yucky. She does not want to eat or drink. I have kept the tylenol coming every 4 hours to try to ease the back pain. Besides having a spinal tap she also had a bone marrow biopsy. This is a big one. It will tell us what has taken place in her bone marrow since her transplant.
Most of the results won't be in for a week.
Her bone marrrow  is also being checked for any signs of leukemia.
Kristen is still fighting to get her strength back.
Hoping she'll turn a corner soon.
I call this her jet pack. She has an IV drug that goes in from 9-11am. This is usually the time of day she likes to get organized and move about the house. I had this great ideas to put the IV pump in a backpack. She's much happier as she doesn't have to
just sit and wait for the drugs to get done.
Yes, she really does make her own bed.
Yes, her hair is making a comeback!

Monday, May 10, 2010

A Heartfelt Thank You

As most of you know last week was Kristen's birthday. Almost every single day since last week Kristen has received either a package or a card. Each time I run into her room and proudly announce,
 "Your mail is here!"
she gets a very big smile on her face. I wanted to thank all of you for your kindness.
Your thoughtfulness really does matter and is very appreciated.

Sunday, May 9, 2010

Happy Mother's Day

A mother is a person who seeing there are only four pieces of pie for five people, promptly announces she never did care for pie. ~Tenneva Jordan


Saturday, May 8, 2010

6 very long months

It’s been 6 months ago this week that we received the devastating news that Kristen had relapsed, that the leukemia had once again found its way into her bone marrow, her blood stream and her spinal fluid. It didn’t make sense, her blood counts just 4 weeks earlier look great for the first time in months. She was getting her strength back and showed no outward signs of the monster that had once again taken hold of her. I was still trying to make sense of the unexpected passing of my father just 3 weeks earlier. Our family was in shock and mourning his loss. Kristen and my dad were very close. He dearly loved her and she him. The past 6 months have been difficult not having him here. He was always there for everyone. I know his heart would have been broken to learn leukemia was once again raging throughout Kristen’s body. This has been a long painful 6 months for everyone. We have taken comfort in knowing that my father is still very close to Kristen and that he is watching over her.

And what a long way Kristen has come in a short but seemingly forever 6 months. First of all we were told that Kristen’s only chance for a cure would be a bone marrow transplant. We were also told that it was very risky for children with Down syndrome. We were also told that Kristen would need to reach a full remission before she could have the transplant and there was a chance, a rather large chance, that she would not find a remission. The news was not good. Another one of those insurmountable obstacles placed right before us. I seemed to forget that this was Kristen we were dealing with. The one who has always had strength, fortitude, determination and the sheer power to survive all that life had dealt her. Now 6 months later she did find a remission, after only one round of chemotherapy, her body was once again free of leukemia. 73 days ago a bone marrow transplant took place. To this very day Kristen continues to amaze the doctors with her progress. She continues to be their “Rockstar.”
And we are thankful 

Kristen and her grandpa a couple of years ago with my first grandchild and his first great grandchild.

Kristen and her grandpa on their last trip to the dollar store together

The little rockstar today with her sheer strength of soul that emanates
from her everywhere she goes.

Tuesday, May 4, 2010

and party we did.


Birthdays at our house start early in the morning and go until late into the evening. Yesterday was no exception. We took Kirsten bowling and to lunch early to avoid crowds. I carried clorox wipes with me and wiped everything before she touched it. People probably thought I was crazy and maybe I am. This was the first time Kristen has been out in public for almost 6 months. She had a blast! Soon after arriving home she retreated to her cozy little spot in her room. The party didn't stop there. She continued to have visitors all day. Grandparents, aunts, uncles and cousins continued to show up all bearing gifts. We even took  cake to her room and sang to her.
It was a good day, no, It was a GREAT day.
We have so very much to celebrate.



Kristen in her new chair surrounded by all of her gifts. You would have thought it was Christmas. Thank You to all those who helped make her day so special.

Monday, May 3, 2010

Today we will party!

We have much
 to be thankful for and to
CELEBRATE!

Happy Birthday
to our little
Miss Lovely!