I created this blog when my sweet little girl, Kristen, was diagnosed with cancer, for the third time. After fighting for almost 3 years Kristen was called home to that same God who gave her life. I've contemplated on many occasions rather I should quit this blog or not. Each time I am inspired that I should not. One of my favorite quotes comes from Neal A. Maxwell- "Those who "plow in hope" not only understand the law of the harvest but they also understand what growing seasons are all about. True, those with genuine hope may see their proximate circumstances shaken like a kaleidoscope at times, yet with the "Eye of faith" they still see divine design." Kristen blessed lives and continues to do so. Her light continues to shine. As for me, I continue to "plow in hope" knowing well that Kristen is mine for eternity. Families can be together forever! This I know. Our family continues to live and to love and this is our story...

Saturday, January 30, 2010

OK...Now I"m MAD

I received a letter from Kristen’s bone marrow doctor today. It was a copy of the appeal letter he sent to the insurance company. The letter starts our saying that he was surprised to receive their letter denying transplantation for Kristen. He states that they (the insurance company) asked for certain things and he (the doctor) submitted adequate documentation supporting the items they requested. The letter continues to explain their data and such.
The last paragraph is the one that set me back a bit. It says,
 “Finally, it must be stated that in light of these facts, and the very quick denial we received from you, I am concerned that you are looking at this prejudicially, considering that because Kristen has Down syndrome this lifesaving procedure is not appropriate. She has a matched sibling available… and I do not think it is appropriate that Kristen should suffer discrimination based on the fact that she has a disability.”

Are you seriously kidding me? She was possibly denied because she has Down syndrome?

Thursday, January 28, 2010

Ice Cream works every time...

Kristen loves to be home. She has done well the past few days. I took her into the doctor’s office today for a blood test. I had to bribe her with ice cream to get her to leave the house. I have to be careful when she has an ice cream in hand. In the movie Princess Diaries there is this part when Mia smashes an ice cream cone on someone,  Kristen thinks it's ok to do the same thing to me. She thinks it's so dang funny to throw her ice cream at me when she is finished with it. Today I got lucky... no ice cream in my face. Her numbers look great. It looks as though things are on the rebound. She will have a bone marrow biopsy Feb. 3rd. We are still waiting on the insurance company, so possibly we will return to the hospital on Feb. 8th to get more chemo. Kristen has been busy organizing her things. She had a large stash of markers and she has been organizing them by color.  She still gets wore out by about 3 or 4 in the afternoon and heads up to her room. She has a bell which she rings whenever she needs something,
like every 3o minutes...she is keeping me busy too!

Monday, January 25, 2010

The Pictures Say It All...

We are HOME!!!
Kristen will have a bone marrow biopsy in 10 days and then more chemo 2 weeks from today. This is a tentative plan as we are STILL waiting on the insurance company to approve the
Bone Marrow Transplant.  More chemo while we wait...

Sunday, January 24, 2010

She's got some numbers!

Yeah! Kristen’s numbers are moving in the right direction. Her pink cheeks and red lips are a welcomed sight as she received 2 units of blood today, however, her platelets have been coming up on their own. She finally had an ANC of 100 today, if they are up tomorrow we could be on our way home. We are standing on a path of uncertainty as we wait for the insurance company to approve the transplant. Although Kristen is in remission, anything could happen, the sooner the transplant can take place the better. If approval doesn’t come soon, we will start another round of chemo in a week or two.
I have had a couple of bad days as the reality of what we are doing here keeps slapping me in the face. Yesterday, Sharon, from housekeeping was cleaning our room, as she does every day. Everyone loves Sharon! The nurse came in and told her she needed to take a break, that Dave, another nurse wanted to see her. She left our room and came back and it was obvious she had been crying.  I had already heard the news so I knew what happened. A sweet little boy had lost the fight. Sharon proceeded to tell me that she knew he was a special spirit since the first day she met him. She said he had something about him, she said he had an “old soul.” I met his mother a couple of weeks before Christmas. She was very quiet and sweet. You could see the hurt in her eyes then. My heart aches for her and her sweet little boy. Sharon said that last time he was here, he was in the same room that we are now in. His little brother was coming to visit him. The blinds in this room do not work very well. Sharon said he was sitting at the window crying because he couldn’t see his brother leaving because the crazy blinds would not open. I decided I must fix these blinds! I have been working on them for a while and I think I’ve got it!

When I think about Sharon’s words when she said this little boy had an “Old Soul” I seriously got chills up my spine. I have a family picture here in our room and on 2 occasions I have had a nurse tell me that Kristen has an “Old Soul” I chose to interpret that to mean she is wise beyond her years. Our children fighting cancer need that. Every child that I have met that is fighting cancer has that quality…Wisdom. Somehow they just know.

Thank You for your continued support! Kristen loves her cards and letters.

Friday, January 22, 2010

Someone please check the chemo

Someone needs to check the chemo. There are 24 beds in the Immunocompromised (ICS) Unit. Our unit is equipped with highly sophisticated air filtering and environmental monitoring systems. This is home to the cancer and transplant children. We have been regular guests for the past year and a half. At times the unit is full to capacity, but usually you can find an empty room or two, especially as the weekend nears. This past 3 months, since Kristen’s relapse, the rooms are full. Not an empty room in the house. Not only that, they have opened another pod on the floor just below us which is home to 8 children. The other day they had to open another pod bringing the total downstairs to 12. That makes 36 cancer kids that are presently here. For some unknown reason, Leukemia, both ALL and AML are running rampant through these halls. Not only are new diagnosis on the rise but the number of relapse children that have come back is astounding.
I realize that childhood cancer is considered rare. However, If you happen to live here for any given amount of time, it is anything but rare, it’s life. I also realize that over the past several years childhood cancer has transformed from a death sentence to a treatable disease. As I have walked these halls the past few weeks talking to other parents about their children and what has brought them here, we all have the same concern, “What the heck is going on?” The mother of a relapse ALL little girl asked my last night, “Do you think they are putting water in the chemo?” From my front row seat I am wondering if enough is being done. Where are all these new diagnosis and relapses coming from?

As for Kristen, She is in good spirits. Her numbers appear as though there might be some white cells brewing in the next few days. The doctor came in this morning and said, “I’m amazed at how well she is doing.” That’s my girl! I would expect nothing less from her. She put on her boxing gloves a long time ago and is not about to take them off any time soon. Still waiting to hear from the insurance company concerning our appeal.

Sunday, January 17, 2010

White Count = 0

Kristen's white count finally hit 0 today. It's hard to tell how long it might take for her bone marrow to recover and the numbers to start coming up. In the past it has been anywhere from 2 to 4 weeks. Kristen has been feeling quite well so she hasn't been begging to go home just yet. She has been quite the little trooper. I think the boredom has began to settle in a bit for me. I need to make a run home and grab some projects to work on. Speaking of home, I actually did escape for a few hours today. Rich came and stayed with Kristen for a while as I went home to find a surprise waiting for me. It really wasn't one of those pleasant surprises but more of  a "are you kidding me?" surprises. Seems Ryan and Richard got a little bored yesterday and thought it was a great time to remodel the kitchen. All of my cabinets, countertops, tile and appliances were missing. They tore them all out! The stuff in the cabinets was boxed up and carried to the basement. All I could say was, "Oh My!" Actually, I said a few swear words but I won't go there. 
Not only is my life a disaster, now my house is too.

Kristen and her little brother, Ryan

Thursday, January 14, 2010

Feeling Better

It's amazing what 2 units of blood will do. This girl has seriously figured out how to dance in her bed. When we arrived on Monday Kristen did indeed need blood. The next day she received platelets. She still has an ANC, which normally would be a good thing, but the sooner it hits 0 the sooner it will start to come up and the sooner we can go home. From what I am hearing she is ready for the bone marrow transplant. We are just waiting on insurance. The clinic filed an appeal so we are once again waiting for a reply. Once they get the approval it should take about a week to two weeks to do some work ups on Kristen and her brother. A quick update on Kristen's donor. I have 6 children so the chances of Kristen having a sibling match were good. My other 3 daughters were the first ones here to be tested as each of them wanted to be the one to save their sister. Their tests all came back negative. They were all pretty sad. Next my youngest son, Ryan, made it in for his test and after waiting 2 weeks he was also negative. We had one more shot. My oldest son, Rick, was the last one to get tested, he worked late and always arrived after the lab had closed.
We had decided that the chances of him mataching were slim. I had pretty much given up. After waiting another 2 weeks for his test results... we had a match! The interesting thing about all this is that my two youngest children match each other, 2 of my daughters match each other and Kristen and Rick are a match. Hopefully we will never need it but it is comforting to know that everyone has a match. Rick is excited to help Kristen. We learned a little about the procedure, they will put Rick to sleep and take several vials of bone marrow from his hip bones. He will be uncomfortable for a few days. The marrow will be put into Kristen's blood stream through her central line. Before the transplant takes place, Kristen will receive intense chemo-therapy for 5 days to kill off all her marrow before replacing it with her brothers. We have been warned of the many side effects that will come with it. For some reason bone marrow transplants seem to be more toxic for children with down syndrome. I know the preparations for the transplant and the days following will be difficult for Kristen. I have to remind myself often that Kristen is a fighter. She has already come a long way and proven many times that miracles do happen.

Kristen and her brother Rick last Valentine's Day

Monday, January 11, 2010

And...we're back

We are back in the hospital for count recovery. Which means we do a lot of waiting. As of now we don't have Kristen's blood counts back but as you'll notice in her picture she is quite pale. I suspect she will be getting blood soon. Kristen has continued through the weekend to have her dizzy lightheaded spells. No one is sure what is causing them. We are going to check her thyroid levels again tonight. The doctor said that they are already working on more paper work for the insurance company. We are hoping to get approval for the bone marrow transplant soon, but it might take a few tries.
I need to once again send a huge Thank You to so many of you that have continued to send Kristen cards and letters.
She truly loves them!
I have been so inspired by the amazing friends that I have met here. Each day when I check on all my friends  I usually end up in tears. Some days I find new friends who continue to inspire me. I have come to the conclusion that this world is full of good people,and through our trials we share and lift each other. If there were no night, we would not appreciate the day, nor could we see the stars and the vastness of the heavens. There is divine purpose in the adversities we all encounter.
They prepare, they purify and they bless.

Friday, January 8, 2010

A good laugh and a long sleep are the best cures in the doctor's book. ~Irish Proverb

Seriously...this girl never sleeps! This is a rare occasion so of course I had to capture the moment. She looks like a beautiful
angel so cozy in her bed.
Bringing a sick little girl home from the hospital has some advantages and well some disadvantages. It is a blessing to be here at home with family, being able to make dinner, do laundry and get Ryan up and off to school. Those are some of the things I miss when we are in the hospital. Do you ever think you could actually miss cooking, laundry, grocery shopping? Take it all away and I am pretty sure you would be just like me and miss those things. The just being a mom things.

Kristen was very sick Wednesday night. She spiked a fever, her arms and legs were red and on fire caused by the chemo she had received. She was throwing up every few hours. She was light headed and dizzy. It wasn’t fun. I was scared and worried and for a few
moments I actually thought,
“Why did we ever come home???”
After a dose of Tylenol and a few prayers she was able to fall asleep. I slept with her and kept feeling her head to make sure she wasn’t burning up. By 3 in the morning the fever broke and she was finally resting comfortably. Yesterday morning I tried to get her to stay in bed but of course she was anxious to get to her routine. She was still nauseated and weary on her feet. I tried to give her the anti-nausea medicine but of course it was so awful tasting that she gagged and threw it up too. She was able to keep some soup down. She went back up to her bed around 6pm. She usually lies in bed and watches Disney Chanel for a few hours. As you can see in the pic she quickly fell asleep and slept for several hours. Sleep she indeed needed.
As for today, she is once again up and anxious to get to her routine. She is pale and her eyes are sunken. I will definitely be pushing for lots of fluids. As the chemo settles in and her counts begin to fall she will only become less and less active.

One more note…I received the letter from the insurance company it reads something like this;
"This is to advise you that your request for authorization of payment for a related allogeneic bone marrow transplant for the above-mentioned client has been denied."
I have left a message with the bone marrow clinic asking themwhat do we do now?
So we got the good sleep, now we are looking for a good laugh.
 Any suggestions?

Wednesday, January 6, 2010

Wordless Wednesday...almost

That's right! Kristen is in my car and we are going HOME! Kristen just had 3 days of intense chemo, however, the doc doesn't expect her counts to drop until the weekend, he let us leave and return Monday for count recovery. Of course if Kristen spikes a fever then we are right back. She was hit hard with the chemo and she really isn't feeling well so we'll see how it goes. Just being home should make her feel better.

Monday, January 4, 2010

Some Good News...Really Really Good News

We are back in the hospital for another round of chemo. It seemed to be harder this time packing up and leaving home. You would think I would be used to this by now, but no, it really doesn't get any easier. The first dose of chemo just finished. It went in over 3 hours and will start again at 6 in the morning. Eyedrops and bathroom every 3 hours so it could be a long night.
Now for the good news...
Back in November when Kristen relapsed the picture the doctor painted was rather ugly. He explained that the only thing that could save Kristen was a bone marrow transplant. But first she needed to be in a full remission. He also explained that it would take at least 2 and possibly 3 rounds of chemo to reach a remission. There was also a chance that she would NOT go into remission. 25% of relapse AML children don't find remission. Last Tuesday Kristen had a bone marrow biopsy to see how she responded to the first round of chemo. The results from the pathologist were not in until today. The doctor met us in our room and said that he was SURPRISED and PLEASED! Kristen's bone marrow showed NO sign of Leukemia! NONE. You are considered in remission with anything less than 5% leukemia cells, Kristen showed none whatsoever. The doctor was taken back a little as he wasn't quite sure what to do next. He was going to give Kristen a chemo drug that she has had her lifetime limit of, it damages your heart so there is a limit. But he really felt he had no choice as he felt a remission was going to be tough. The little angel surprised him and already reached remission. He thought we might go straight to the bone marrow transplant but we don't have approval from the insurance yet. He was not comfortable letting her sit for a few weeks without more chemo. He decided to do half of a round, wait for counts to come up,send us home for a week or two and then come back for the transplant. I know I have been rambling and I am sure most of you have no idea what I am even talking about. Just know it is good, no it's GREAT!
Kristen has once again defyed the odds. She is Amazing!
ThankYou for all your prayers. I know our prayers are being answered.

Saturday, January 2, 2010

Bring in the New Year...

The past three weeks have been filled with much happiness at the Kirton House. Being home for the holidays was the best gift! There has always been a huge celebration on New Year's Eve at my mother in laws home. It is also my birthday so we always have a nice dinner at my house with all my children before we go to Grandma Kirton's. She lives behind us so we were going take turns sitting with Kristen. Out of no where Kristen began feeling sick. She was complaining that she couldn't see, that she was dizzy, her stomach hurt and she was nauseous. Her color quickly left her little face and I thought she was going to pass out. I carried her into the bathroom and quickly back to bed. She lay there in my arms for an hour or so until the lightheadedness passed. A quick reminder that we have a sick little girl and that the next few months are going to be some of the toughest she or I have ever faced. The past few weeks I put the reality of the next few months somewhere where I didn’t have to think about them. I wanted to enjoy the holidays with Kristen and my family. However, those thoughts kept manifesting themselves to me. Christmas night a flood of emotion came pouring down as I realized nothing has really changed. We still have a very sick child. We celebrated our first Christmas without my father. This quote from
“It’s a Wonderful Life” is rather fitting:

"Strange, isn't it George?
Each man's life touches so many other lives.
When he isn't around he leaves an awful hole, doesn't he?"
Clarence the Angel

There has been many times this past year when I have felt like I have finally reached the top of one summit, only to see more mountain peaks ahead, much higher and more challenging than the one I had just climbed. I am thankful for the strength I have found that I never knew I had, for my family and friends who continue to hold me up, for the courage and resilience that Kristen continues to show. This morning as I make final preparations to pack and get ready once again to take Kristen to the hospital for another 4 to 6 weeks I admit that I am scared. I don’t want to do it! I don’t want to see her go through yet another round of chemo. More mouth sores, more rashes, more nausea & vomiting, more poison being pumped into her blood stream, more infections, more hair loss, more dizziness, and more sleepless nights. One minute I feel seriously sick to my stomach just thinking about it. The next minute I feel peace knowing that this will be a very short time. Kristen’s chances of the bone marrow transplant curing her are pretty much 50/50. So the chance is so worth it. A chance she would choose to take it she could choose for herself. So once again we will pick up our suit cases and put on our boxing gloves and return to the hospital for yet another round of chemo in preparations for the upcoming bone marrow transplant. I have recently been reminded to “hold on a little longer,” even when things look bleak, remember that the Lord loves us, He remembers us and He will sustain those who endure in faith.

"Maybe who we are isn't so much about what we do, but rather what we're capable of when we least expect it."
— Jodi Picoult (My Sister's Keeper)

A tradition at Grandma Kirton's is to burn the Christmas tree on New Years. I was home with Kristen and took this picture from our window. It really doesn't do it justice as there were many fireworks.

More Fireworks for outside our window on New Years.

 Two daughters engaged over the holiday! Some fun to look forward to this year.

More good news! My olders daughter, Katy will welcome baby number 4 in July! Kristen is so excited. She thinks she is going to have a boy and she wants Katy to name him Joe, after one of her favorite
 Jonas Brothers.

Yesterday I found Kristen in the family room organizing her many cards. She seriously laid all of them out, they were on the couch, on the floor and on the entertainment center. She looked at each one of them and then carefully put them back in her basket. She is such an organizer.