Monday, December 28, 2009

One more week in paradise


Christmas was of course FABULOUS! Being home was the best gift Kristen or I could have asked for. Kristen has been feeling quite well. She has settled back into her routine. Kristen's Aunt Lonie made her this darling quilt. All of the immediate family put their handprints on it. Kristen loves it! Tomorrow is a big day for Kristen. She has an echo at 10am and a bone marrow biopsy at 1pm. All of this will done outpatient. We are all very anxious to see the story her bone marrow will tell. of course we are hoping for far less leukemia cells. A full remission is not expected until another round or two of chemo but it is important to know how she responded to the first round of chemo. We were scheduled to be admitted back into the hospital this Thursday to begin the next round of chemo but with the holiday I asked if we could possibly wait until Monday the 4th. I got the word this morning that Monday would be fine so we get one more week at home or...
One more week in Paradise!!!

Some have said Kristen's room is cute so I thought i would add a couple more pictures.

Wednesday, December 23, 2009

Merry Christmas




At times our own light goes out and is rekindled by a spark from another person. Each of us has cause to think with deep gratitude of those who have lighted the flame within us.
Albert Schweitzer

Many thanks to all my family and friends and even strangers who have shown love and kindness toward Kristen and I. There were many times these past few months that I felt as though my light had completely gone out. I felt as though I was standing in a dark place a very dark place. At times it has been a dark scary place. It has been through all of you that the light has once again began to burn. It is through your kind words and encouragement  that I have been able to once again feel the warmth of your light. Although there are many long hard days ahead I am grateful to say that I know that I am not alone.
This Christmas I am very grateful for family friends and even strangers.


Saturday, December 19, 2009

Love and generosity abound

How blessed I have felt this past week to be able to bring Kristen home from the hospital for a bit. After spending the last 5 weeks in the hospital, Kristen, Myself and my family really really really needed a break. The struggles and the stress in our home have been lifted for a time and filled with peace and joy and hope. When we are home it seems easier to surrender to the things I can't control; the next round of chemo and the bone marrow transplant in the very near future. Once again Kristen continues to be my source of strength. She doesn't give up. She is truly an angel and inspires me daily.
Kristen had her blood checked on Thursday to see if her white count was high enough to stop the anti-biotics. Her ANC was only 300 so the anti-biotics will continue through the weekend.
We had our bear project this past Thursday, thank you so much to all those who participated and helped. We needed 24 bears and we were able to make 27. We will deliver the bears to the hospital the first of the week and I will definately be posting pictures. Many of my kind neighbors have also donated stuffed animal to the hospital and we will be delivering them also. Thank You!
Kristen continues to receive cards, letters and gifts. Everytime I open a card and read Kristen a message my eyes fill with tears as I am so touched by the kindness in the world. Thank You so very much to all of you. Kristen received a very large package from sweet Carly. She loved opening the many gifts. All of you and your children  are such a source of strength, even though I have not met most of you my life and Kristen's are richer for knowing you. Your love and generosity abound!


When Kristen woke up this past Monday she was all smiles when she looked around and seen that I was packing our stuff.

Kristen passed out these cute ornaments to all the nurses before we left the hospital. They are from St. Jude Children's Research Hospital and all profit is donated to research.

Kim and a few of her room mates holding the bears that they donated

The bears! So many made this project possible. Some dropped bears off at our house and some met me at Build-A Bear we even received a bear from Zoey in California!

The bears packed and ready to go

Kristen holding her IV pump getting her dose of anti-biotics

Looking through her basket of cards!

Tuesday, December 15, 2009

Something to smile about.

Kristen has not stopped smiling since we got home yesterday. She is feeling quite well for the moment. Her ANC yesterday was a mere 200, usually the docs like it to be 500 before they will let us go home. Because we live close and have experience the doctors decided to send us home with IV antibiotics until she reached 500. We will be going to clinic on Thursday afternoon to have her blood checked. Of course, if she gets a fever then we are right back at the hospital. So far the plan is to give her counts a chance to recover and then in about 10 days to 2 weeks do another bone marrow biopsy and then check back into the hospital and begin round 2 of chemo. From my calculations that puts us
HOME for Christmas.
A few months ago I decided I wanted to give something to the children fighting cancer in the ICS unit. I thought of one of the gifts Kristen received while she was in the hospital. It was a darling Build-a-Bear. I knew it would be difficult for me to come up with 24 bears on my own, so I decided to invite all my friends and family that wanted to participate to come and donate just 1 bear.
 This Thursday, December 17th at 11am I will be at the
Build-a-Bear
 in Fashion Place Mall in Murray.
You can purchase a bear for as little as $12.00 or as much as $30.00. If you can’t make it Thursday you can drop one by my house any time. I know from experience that these bears will put smiles many faces! Hope to see you there!

I have to tell you how amazed I am at the outpouring of love Kristen and our family has received. Family, friends and many strangers have reached out to Kristen and sent her cards and gifts and kind words. It has helped to make this difficult time much more bearable. Thank You! Kristen still has a very long hard difficult road in front of her. We anxiously await her bone marrow biopsy in a few weeks to see how she responded to the chemotherapy. I have to be reminded often to take things one day at a time and sometimes moment by moment.

Monday, December 14, 2009

Saturday, December 12, 2009

Blessed with kind friends






Guess who came to see us yesterday?  Feisty Kaelyn and her parents! As soon as they letf I realized that we didn't get any pictures. Kaelyn is so adorable in her pictures but even more so in real. She is definitely an angel. It was fun to get to know Jeana and Wayne. I have seriously met the most amazing people. They brought both Kristen and I a gift. Kristen had just finished a transfusion of platelets and was high on benadryl as you can see as she is opening her gift. Thank You so much for visiting us and for the gifts.

Friday, December 11, 2009

Christmas is when?


It just hit me this morning that Christmas is 2 weeks from today. I have been living in my own little room for the past month and It really hasn't hit me until today.  I think I will break down and bring a little tree in for Kristen. I was hoping we would be home soon and she wouldn't need a tree here but now I think we need one. It also hit me that I haven't done any shopping yet. I best come up with a plan and SOON.
Kristen continues to get a few letters each day and that is the highlight of her day when her sister brings the mail to her.  She sits and opens each card and admires
it and then she has me read it to her. 
She has also received a few packages which have been amazing. 
Thank You to all of you!
I met with the bone marrow transplant team this week. Wow, talk about overwhelming. It is hard enough for me to see past today, and the bone marrow stuff makes me feel like I just might drown. There is so much to learn and to consider and so many IF'S. I still can't imagine that Kristen is going through this again. Bone marrow transplant is tough, really tough.  It is another one of those insurmountable obsticles that has been once again placed in front of Kristen. Seriously how much can this little girl take? Life isn't fair and in the words of our friend Renee, CANCER SUCKS!

Monday, December 7, 2009

I woke up to this...


Bright and early at 5am I hear the chirping of a l ittle bird and then a laugh. Seems Kristen couldn't  sleep and was going to make dang sure I couldn't sleep either.  She was persistant and I finally gave in. Who had the great idea of a chirping bird anyway? I was hoping Kristen would sleep in today as she has a spinal tap at 1pm which means nothing to eat or drink. No such luck. She is getting platelets now and this afternoon 2 units of blood.  I keep hoping some of her numbers will start holding steady but as of now NOTHING! I was also thinking maybe by this weekend we would be on our way home but now I wonder. Kristen had a good weekend as she was feeling
 much better and being her happy  teasing self.

Saturday, December 5, 2009

Tough week for Kristen



I do believe the train finally ran through here and knocked Kristen to the ground. Wednesday Kristen woke up dizzy and light headed.  She also was complaining of head ache and back ache.  She was in bed moaning for the better part of the day.  Then by evening she was throwing up non stop. Luckily no fever developed. Thurdsay we postponed her spinal tap and she just laid in bed without much movement and by evening was able to hold some soup down. Still no fever. Friday Kristen was lethatgic the entire day.  She could barely lift her head off the pillow but at least she was able to keep food down and still no fever.  Today Kristen is finally sitting up and showing some interest in the things around her. She is still laying back but will sit up ocassionally and take a sip or eat a cracker. Not much happening with her blood counts.  She still requires platelets and blood every few days.
Richard came up yesterday morning for a few hours and I was able to escape for a minute.  I went to the Festival of Trees with my daughters and my mom. The trees were amazing. There were 2 trees that were dedicated to Kristen.   One of the trees hadn't sold yet, I called Richard and he said "buy it."  It is for a great cause as all the money goes to the hospital. We are excited, the tree will be
delivered to our house on Sunday.

Kristen's bracelets have arrived!  They are pretty cute. We will be distributing them soon. If you want one send me an e-mail or comment with your address.
Once again Kristen had been receiving many cards and letters and even a few packages. Her face lights up when her mail is delivered. Thank you.


Tuesday, December 1, 2009

Hair is coming out and some Good Wishes

Once again the reality of this awful disease is staring me in the face, another outward appearance of the inward struggle that is going on inside of Kristen's frail body. Her pillow and pajamas are once again covered in hair. Kristen really hates losing her hair. In the past she looks in the mirror and rubs her head and says, "My Hair?" She was finally getting a full and darling head of hair. It came in darker and with curl and body. Last night after her shower I took some
pictures of her sitting in her bed with her cute hair, knowing that is was thinning and would soon be replaced with skin.

This morning I came across a Good Wishes Program from France Luxe . Good Wishes, an Laurie Erickson USA® program, provides a scarf or an It’s a Wrap to women and girls experiencing a thinning or loss of hair due to illness or treatment at no cost. Each scarf is a gift of hope that carries with it the support and good wishes of our staff and represents the strength and beauty of the woman or child who wears it. I already called and Kristen has a pink scarf on the way.
I love that there are so many caring people in the world.

As Kristen and I sit here day after day waiting for her bone marrow to recover from the intense chemo, I have plenty of time to think about what truly matters in life. Kristen has given me the knowledge that true courage and strength do exist. Courage has taken on a whole new meaning for me. The Webster's Dictionary defines courage as mental or moral strength; to venture, persevere and withstand danger, fear or difficulty; and tenacity, stubborn persistence and unwillingness to acknowledge defeat. There are many unsung heroes who exemplify true courage and bravery whom many do not even recognize.
They are the children with cancer.