The Calm Before the Storm

Day +4

We know the storm is raging in the not so far distance. The chemo finished almost one week ago.

Soon we will notice the effects.

In the meantime

Kristen is comfortable and even a little bored at times.

 We'll take the boring days anytime.

Once engraftment occurs, there is a chance for

another storm of sorts.

Graft-versus-host disease (GVHD) can occur at anytime. This can be a serious and life-threatening complication of a bone marrow transplant. This occurs when Kristen's immune system reacts against her brothers bone marrow. Acute GVHD usually occurs during the first 100 days after transplant. Chronic GVHD can occur after the first 100 days.

 Medications are already being given to

reduce the risk of this complication.

Once again we are praying that any complications will be minimal.

A Second Birthday

Happy Bone Marrow Birthday to Kristen!

The transplant went well. Both Rick and Kristen are doing well tonight. I talked to Rick a couple of hours ago and  his back was still numb. The doctor told Rick they stuck him 140 times. OUCH!

Rick arrived here at the hospital at 6am. He was taken into surgery at 8 and by 9:30 the doctors were finished. They had removed over a liter of bone marrow. Rick went to recover for almost 2 hours. The marrow was taken to the lab and prepared for Kristen. Meanwhile, Kristen remained in her room with family as we waited for both Ricky and the bone marrow to arrive. At 2pm the doctor arrived with the marrow. The bone marrow team came in and presented Kristen with gifts and songs. She had just been given a large dose of benadryl so she was a bit sleepy. I love all of Kristen's nurses and doctors. They are all amazing. It was interesting to see the lab tech open her cooler and pull out the bag of bone marrow. After checking the numbers and making sure Kristen was getting the right bag of marrow the transplant began. It took just over 2 hours and our girl was done. Now we wait. Kristen is expected to engraft somewhere between day 15 and 30. In the mean time we can expect a sick little girl. Her mouth sores should be so severe that she will stop eating and she will also be put on a morphine pump to control the pain. She will be given IV nutrition and watched closely as she has NO immune system. The next few weeks will be a critical at time. We will continue to take things one day at a time and continue to pray that her side effects will be minimal and that she will be comfortable. We love Rick and are so grateful that he has led a life that enables him to donate to his sister and give her chance for a cure. My children are amazing.
It was comforting to have them all here today to support each other.
Thanks to family and friends who have also

supported us and continue to check on us daily.

All done!

Kristen just finished her transplant. I have lots of pictures coming soon. Kristen is doing good and her brother Rick is tired and sore. Thank you for all your prayers.

Day -1 A Surprise!

Kristen received a surprise in the mail yesterday. She loves surprises!

It was wrapped in bright yellow paper

She's almost got it.

Most of you will recognize these beautiful pillowcases that Sarah has been working on!

 Sweet Dreams

Thank You Sarah!

Most of you have been following Sarah along as she went shopping and chose the fabric for these pillow cases. She then takes us on a step by step tour as she makes this special gift. We are honored to receive such a gift. Sarah and her mother, Joyce have become role models for all of us. Joyce has allowed Sarah to become independent and reach her highest potential. Joyce is a fabulous mother and has provided opportunities for Sarah to grow and learn. It is apparent that Sarah loves life and learning new things. Both Sarah and Joyce work hard, serve others and stand up for what they believe in. They live, love and laugh. There is much for us to learn from these 2 special girls and I am honored to call them friends.

Today is a good day. Kristen's chemo is now finished.

Tomorrow she will receive her brothers bone marrow.

And then we wait...

Day -2 Be Brave

Kristen is 7 hours from finishing her LAST chemo. We are sooooo excited. I am NOT planning on Kristen relapsing so this will be her last chemo treatment. Down the hall by the nurses station is a bell. The ringing of this bell is reserved for the children on their last treatment day. I really don't care if it is 2 in the morning, we are running down the hall and are going to ring the bell. Kristen received a special package from a special friend. This card was attached and the sweet girl wrote, "Be Brave" Those words pretty much describe Kristen. She is the most brave person I know. In fact, all the children here are just that...brave. We are really excited to share the contents of her special package. It will just have to wait a day or two.

In about 40 hours Kristen will receive her new bone marrow, a new chance at life. We are all feeling a flood of emotions as we finish the chemo and prepare for the transplant. We are still hoping for another miracle, that the transplant will work, that the side effects will be minimal and that Kristen will continue to fight and continue to Be Brave as the next few weeks could be some of the hardest yet.

Day -4 Chillin

The chemo has been going for almost 36 hours, 60 more hours to go. That means we are almost
 1/3rd finished with the chemo. Yipeeee!

Kristen is pretty much chillin. I hesitate to say that as I know at any minute things could change. The anti-nausea drugs are working... up to this point. Her appetite is still hanging on. She was moaning a bit this morning but the more she woke up the less she moaned. We won't see the full effect of the chemo for a day or two. It will completely wipe out her bone marrow. She will need transfusions and once again have no white cells. She is on a low microbial diet  as she will have no infection fighting cells for weeks. That means she can only eat food that is prepared in the hospital kitchen. She is bummed because her favorite food is mashed potatoes and chicken strips from KFC.

Thank You for all your support and prayers.

Kristen LOVES lotion rubbed on her feet.

This is now becoming a daily ritual.

Kristen received more cards today. Thank You! The dog with the large eyes is from Angi and her children Carver and Mazzy. They have sent Kristen several cards.

During parent hour I made this for Kristen. Creative I Know.

Day -5

Arriving at 5am. Someone looks tired. The picture below will be our

"Before" picture, as in before the trains rolls in.

Now we'll start counting the days. We start at -5 and work our way to 0. Day 0 will be Kristen's bone marrow transplant and it will become her bone marrow birthday. The nurses and staff will all come in and sing and bring gifts to celebrate Kristen's new chance at life. We arrived here at the hospital at 5am this morning. Chemo started at 6am and will continue for 4 days. Kristen is on several medications to counteract the many side effects of the chemo and to prepare her for the transplant. We enjoyed the last few weeks at home. I can't say I accomplished much but I can say that I enjoyed being home and just living life. Kristen has done very well the past few weeks. She has gained a pound or two and the sparkle has returned to her eyes. I believe this added strength will help her in the coming weeks.

Thanks to all who have been praying for Kristen. I know this has helped her and will continue to sustain her over the next few weeks.

More Testing

Kristen had an audiology and clinic appointment today. It is difficult to test her hearing because she likes to do things her way. She was supposed to drop a block in the bucket every time she heard the beep. She soon realized this was a game and would drop a block in just for fun. The chemo she will receive in a few days can affect hearing, so a baseline was needed. We didn't get too far. In clinic a few of her meds were changed. She needs to be on something to protect her kidneys from the chemo, and something else to keep her from having seizures. Sounds like we are going to have just a blast this weekend when the chemo starts.

Here is the plan...

*She will have a dental check-up tomorrow.

*Thursday, Rich and I have "education day" in the bone marrow clinic where we will learn more than we ever wanted to know.

*Kristen will be admitted to the hospital at 5am Friday morning.

*Intense chemo will start at 6am and continue for 5 days.

*She will then rest one day.

*The bone marrow transplant will take place on
Wednesday, February 24th.

The chemo will be new stuff she has never seen before.
The word on the street is...

 "It's tough!"

Say a little prayer for her.

Be My Valentine

Kristen loves Valentines Day. She likes to prepare valentines by signing her name and attaching a treat. She also loves to receive valentines. We do the whole ring the doorbell and run thing. Every time the doorbell rings she is on alert waiting for her valentine. Today she received many. Kristen had a special visitor today. Lily and her mother came by for a visit. Lily brought Kristen a valentine Barbie, a really cute dog that she can stuff herself and a t-shirt for her and one for her brother, Rick. The t-shirts are extra special. They are printed with a picture of a ladder and the words, “ladder to heaven.” Lily’s parents have always said that Lily is their ladder to heaven. I believe we could all say the same about our amazing children. Thank You to Lily and Suzi for taking time to come visit Kristen. Yesterday Kristen had quite a pile of mail. Thank You so much to all of you that continue to remember her. She received a large package filled with valentines made by a group of girls from Saratoga Springs. Her eyes lit up when I carried the package to her.
She was delighted to open all the cards and letters.

We have a busy week as we prepare to be admitted to the hospital this Friday. If I said I wasn't scared I would be lying. I seriously feel sick if I think too much about the upcoming weeks. I have to keep telling myself that this is Kristen's only chance for a cure. It is difficult knowing that
she is going to get very sick before she gets better.

Lots of pictures from a day filled with love...

Lily and her mom, Suzi

The Ladder to Heaven Shirt from Lily

2 days ago, we heard a little something from the insurance company. It wasn’t no and it wasn’t yes. It went more like this…“You are scheduled for a prehearing conference call sometime in March. I can’t give you an exact date; however, I will let you know as soon as we know.”

My first thoughts were…”Are you kidding me?”

Kristen doesn’t have a month.

Cancer waits on no one.

I called my husband and asked him if we could start selling everything we had. Kristen needs this transplant NOW. Of course he agreed that we would do whatever we had to do to make sure Kristen was able to move forward with the transplant.
You would all do the same.
 Every parent would.

Yesterday I waited and waited and heard nothing. I watched the clock this morning and as soon as it said 9am I was on the phone. I called the coordinator with bone marrow transplant to see if she heard anything and if we should put our home up for sale. She said,
“Don’t sell your home just yet, I have some news for you...
The doctor is ready to move forward without the approval.”

We spent the remainder of the day in the hospital getting labs for Kristen and her brother, Rick. The doctor spent a lot of time with Rick explaining all of the donor information. He signed the consent forms and he is ready to go. I received a schedule for Kristen and it looks like she will have a busy week. Tomorrow we are back at it with an EKG, an Echo and pulmonary function testing. Next week is also full of testing and she is scheduled to be admitted on
Friday, Feb. 19th to begin the transplant process.

I am thankful that prayers once again have been answered. There are some we are still waiting on. I am thankful for a doctor who recognizes the value in Kristen’s life and is willing to go forward. We will continue to pray for the right answer from the insurance company. I am also thankful for my family and friends who continue to encourage me. I have been blessed to be surrounded by such amazing people who are willing to help in any way they can. At times when my faith is faltering, it has been comforting to know that someone else is there to pick me up and show me the way. And then right before is Kristen. She never seems to lose her way. She keeps fighting and going forward.
She does the hard things. Tonight we are also thankful for a brother
who is willing and excited to help

Kristen find her way to a cure.

I have a little obsession with conversation hearts. Now that I have found a way to create my own messages the obsession will only get worse. If you happen to be my Facebook friend you can be expecting your custom made message any time now.

For Sale

It's official...Everything I own is for sale. Except of course my soul, give me a few days and maybe I'll be willing to let that go too.

Life is Good

In looking at my last few posts, I am a little embarrassed. It’s true I have been feeling sad, scared, lonely and a little mad. This all sets me up to look ungrateful. Which I need to clarify that I am NOT. My life is full of many rich blessings. Although This past year and a half have been the most difficult time in my life, It has also been filled with some of the most amazing once in a lifetime moments. That’s how I have survived-moment by moment. I have witnessed miracles before my eyes, my family has learned the meaning of the word sacrifice and has received the blessings that come with it, and we are reminded on a daily basis what really matters in life.

Still no answer from the insurance company. Bone marrow team tried Thursday and Friday to get in touch with someone from the insurance company to get some answers but seems NO phone calls were returned.

Part of Kristen’s bone marrow biopsy results were in…Still in REMISSION. YEAH!

Last year as Kristen was finishing up her 7 months of intense chemotherapy, I told my family that as soon as she had her strength back we were all going to Disneyland. It took months. Just as the doctors said it would.  Finally in October her blood counts looked good. She was strong and it was finally time to plan the trip. We made plans to leave November 1st. The hotels were booked and the plans made.

October 12th my dad died unexpectedly. Very unexpectedly. No one felt much like a party. We decided it would be best to postpone our Disneyland trip until February. Funny how things turn out. The day we were supposed to be in Disneyland we were in the hospital with Kristen as she was once again getting a bone marrow biopsy to confirm that leukemia was once again taking over her sweet little body.

This past week my family went to Disneyland… Without Kristen and I. So I thought I would throw myself a little pity party.

Now... I’m over it.

Kristen is home for a few more days.

Kristen is happy.

Life is good.