Fresh air!

I got to go outside today!! It was my first time outside since the beginning of May. When I came into the hospital in May the weather was still very mild. I hadn't felt heat since last fall in Alabama. It was quite a shock when I walked out and was hit by hot dry air! It was so much more pleasant heat than sticky humid Alabama! The only bad part was that it left me wishing I could go to the pool with my kids. I suppose I will have to wait until next summer though. I am not aloud to be in the sunlight this year because apparently my skin will be useless for a while. It won't be able to protect me from bacteria, fungi, or the suns rays. I'm especially bumbed because I got a new swimsuit for my birthday and it will have to wait a year to make its debut!
I'd like to ask to go outside again next week, but they are already going to let my kids come up to watch fireworks with me and I'd rather not push my luck!

Helping others

I am the luckiest mom ever! Every night I get to facetime with my boys. I get to ask them what they did that day and sing them their lu lu bye. Tonight I was surprised to have them sing to me their testosterone filled version of my lu lu bye entitled " lu lu toots" That was the best laugh I've had in a while!
Later that night Marc texted me Conners prayer. He said "Please help mommies bone marrow to get better and start working. Help her to be brave." How can I not be brave and have hope if my 5 year old can? Aren't we supposed to become as little children? I am so grateful for the example that my children set for me. I have so much to learn.

On that note. One thing I'm trying to figure out is how to bring more happiness and peace to this hospital when I am well enough to think of others needs and not just my own. Sometimes this hopsital feels more like a war zone than a place to get well. It is hard to escape the mourners lining the halls waiting for the inevitable. The mother praying for her child to die so he can be released from the pain. The children in the lobby just waiting to get to see their mom or dad. If not to hold them, then to at least talk face to face and remember that they really do still exhist.
If there are any cancer survivors reading this then please consider visiting the hopspital. Just talking to someone who has fought the battle and won means so much to us. It is all about hope.
If anyone else has any good idea's or would be interested in helping me one day, please contact me. If anyone can help right now I know that primary childrens needs pillows, blankets and toys. I know that anything would be appreciated!
For anyone in the North Utah area Box Elder County Credit Union is having a relay for life at pioneer park on June 29th and 30th. Please help if you can. You never know when it could be you or a loved one in need.

Memory Lane

"if I could, I would ask time to stand still so I could hold you a little longer. I'd make the minutes stop so we would always have today. I won't let the sun go down until you know how I feel. I love you so much, I wish time could stand still."- Hillary Weeks

Dreams

Conner is running into the street to get his ball. I see a car coming. I try to yell out to him, but no sound comes from my mouth.
There is an earthquake and I'm trying to get my kids to safety but my legs keep collapsing beneath me.
I am at a carnival and I can't find either of my kids. I am running around yelling for them, but nobody even pays attention.
Brayden is hurt. When I try to pick him up to comfort him, my arms go limp and he falls to the ground.

Every night I have numerous dreams just like these. I wake up feeling frantic, wanting to run to them and make sure they are ok. But then I remember where I am. and where they are. Then I know, the nightmare is real.
The other day I was having a real hard time. I had just missed Braydens birthday party, their first swim lessons, and their first boat ride. The permanent crack in my heart was aching. I couldn't stop crying. So of course, they sent in my therapist! She's actually a very nice lady and good to talk to, so I didn't mind. I began telling her about my dreams. She asked me what I thought they meant. I had never even imagined that they meant anything! I thought they were just my minds way of tourturing me day and night! Then I really thought about it. I told her that I thought these dreams represent how I see myself as a mother now. I want so badly to be there for my kids, to take care of them and love them. But I am so scared that I never will be able too. My body keeps holding me back. I'm scared because I don't know what the futre holds. I don't know what to expect. Will I even be close to the kind of mom I was? or will I be changed permanently? To that my therapist replied that of course I will never be the same.
I will be better.
To steal a quote from one of my new hero's, Stephanie Nielson
"I am Janette Andersen. I am NOT my body"

Endurance

Day after day I watch the sun rise and fall out my window
It is my lense to the world
Fall, winter, spring, summer
I know they feel different, but I don't remember
My days are full of pain, medicine, tests, loneliness, and fear
I've forgotten what it feels like to really live
Everyday I fight
But everyday the memories of what I'm fighting for begin to slip away
I forgot what it feels like to hear the birds and to feel the breeze
To share Sunday dinner with family
To fall asleep with a loved one in my arms
I fear that my life will be cut short
That I wont get to say goodbye
That my children won't remember me
That my family will get sick of the burden
But if I forget all else I will always remember, they are worth the fight
I am worth the fight

The unlucky 5%

Well first of all the odds of me, a young woman, never smoked, never drank, never did drugs, never worked near radiation leaves me with a 1 in 100,000 chance of getting Leukemia. The odds of me getting heart damage was low, kidney damage was low, and an infected gall bladder is low. If a medication has a side effect, I'll get it. Be it riggors, nausea, nuropathy, a itchy rash, you name it, I'll get it! So I guess I shouldn't be surprised when the doctors came in with my bone marrow biopsy results and told me that I am in that 5% group who rejects transplant. They think that when they infused me with the donor cells that some how there were a few white cells of mine that went to war with the donor cells. In the end it looks like all my cells were killed off, but also enough donor cells were killed that there weren't enough to graft. The plan is to give me some more chemo over the next 2-3 days and on Monday reinfuse me with more donor cells. (I am so blessed that she sent extra!) The hardest part of all this is that Im going to miss so much more. I have already missed Thanksgiving, Christmas, New Years, My anniversery, Marcs graduation from pharmacy school, mothers day, my birthday,and now Braydens birthday party. We had pushed it back to this Saturday hoping I would be out. Then the 4th of July. As long as everything goes well I should get to be home for the fall/winter holidays and I've alreay told Marc that unless they have a tracking device on me I am sneaking up for the boys first day of school. I will not miss that!

Letters To Janette From Desiree

Dear Janette,

It's hard to believe that 6 months ago, your family, the Stapley
family and my family were having a good time, playing Settlers of
Katan, and 12 hours later you were diagnosed with leukemia. That day
will forever be burned in my memory. The times visiting you in the
hospital were some of the most emotional situations I have personally
ever dealt with. It was so awful watching you in physical and
emotional pain and feeling so helpless! I hate that I haven't been
able to visit you (except once) in your hospital in Utah. I am so
glad, though, that you were able to move to that great hospital and
have family nearby. Know that your Birmingham family misses you SO
much and is still praying for you and your family!

I want to let you know that you have personally touched my life, as
well as so many others. I love that you have faced these trials with
great strength and courage. Even though you have had your difficult
moments, sometimes difficult days, your faith has been immeasurable
and such a huge inspiration to so many of us. You have taught us to
let every day count, make every moment worthwhile with your loved
ones, count your blessings, and above all, trust in the Savior.
Before all of this happened, I already viewed you as a strong,
wonderful mother and wife. Now, you are like super mom/wife!! I know
your family is proud of you, and I am proud to have you as a friend.
I know this is the trial from hell, but you weathering the storm
amazingly. Keep up the faith and know that I love you a TON!

Love,

Desiree Bowen

Best Days!

My doctor took pity on me! He allowed me a 15 min visit with my boys as long as I gowned up and wore a mask! It was wonderful!

Getting a little nervous...........

Well, the Dr's had expected me to graft by day 20. Here I sit on day 23 with no sign of engraftment. My numbers will go up a little bit to tease me, then drop again! They said that if I haven't made dramatic improvement by Monday that they will perform a bone marrow biopsy to see if my body killed off all the donor cells, or if the new cells are just really lazy and taking their time! If infact my body did kill off my donor cells, then I will have to start all over again. More Chemo to kill of the few warrior cells I have left, then another (possibly larger) infusion of donor cells. Good thing she sent 3 bags! Personally I don't think I would survive another 30 days here! My kids need me, my husband needs me and my family needs a break from all this stress! So please, I would appreciate every single prayer I can get. Maybe together we can have a miracle these next two days!

Hope

I've had alot of people ask me if my situation makes me sad, or mad. The answer is OF COURSE! I think there would be something wrong with me if it didn't! The next question is how do I keep smiling? Well, let me tell you a story: Back in January I was lying in my hospital bed. I was alone (which thankfully is rare!) I began to feel sorry for myself. Why do all those other moms get to spend their days taking care of their family? Why am I having this trial? Is this punishment for something I've done? I was also terrified. At the time I had kidney failure, heart failure, liver failure and an infected Gall Bladder. There were so many meds going into me I'm surprised there was room for blood! I was terrified that somebody else would have to raise my kids. That I would never be able to buy a house and make it a home. About that time I was feeling very bitter and scared and of course I was going through a box of tissues. Then something told me to look up. What I saw was a beautiful picture of the savior that a sweet friend had hung on my wall. It was a picture I had never seen before. It was just a picture of his face. His head was pointed down and he had tears rolling down his cheeks. Just then I had a strong thought come to me. It said "It breaks Heavenly Father's heart to see you go through this. He would like nothing more than to heal me and let me be on my way. But he knows why I have to go through this. He knows that my life will be better for this excperience. And so he stands aside, and comforts me when I am in need of comfort. He prompts me with what decisions to make next, and I know that his angels encircle me and my family". The second thought that I had was more of an image. It was of Christ in the garden of gethsemane. He was kneeling down praying to his father. He said "Father let this cup pass from me. Never the less not my will but thine be done." (sorry if it's not a perfect quote!)That was the first time I realized that Jesus was terrified. If the most perfect man to ever walk the earth could be scared in the face of his trial, then I guess it's ok for me to be scared. Of course his trial was immensly larger than mine, but so was his purpose. I felt relieved that I had permission to ocassionly feel scared. As long as I put my faith in God and trusted in his plan, then everything would somehow be ok. My tears then turned to tears of thanks and hope.