Tuesday, June 29, 2010

Helpless...Not

This past 3 weeks I have often described myself as feeling helpless. Many times I have wanted to scream out, "Can't someone help her?" There has to be something to stop these leukemia cells from invading her precious little body. I am soon reminded that we are doing something.
In fact we are doing everything we can do.

I looked up the definition of
helpless: Lacking protection or support; marked by an inability to act or react; powerless, without power.

 I quickly came to realize that helpless I am not. Our family is being protected. Kristen is being watched over. She is receiving blessings daily. She is for the most part comfortable, she is home. I have more support that I ever could have imagined. from family, friends, neighbors and even strangers. I have definitely been blessed with the ability to act or react. I pray daily that I will do just that, act and not react. How I handle this situation affects Kristen and the rest of our family. Powerless, No. We are surrounded by power, the power of prayer, the power of Kristen's sweet spirit that emulates from her. 
 The power of family of friends and most of all  the
power of faith.

Kristen still makes her way down to the family room every morning. She is becoming more weak. Her blood tests yesterday showed that the leukemia is progressing rapidly. I had a conversation with the doctor yesterday, he suspects that she may have a virus. Maybe in a few days she will perk up. As the weddings are approaching, I have already made tentative plans with my sister to stay with Kristen as I can't see her going anywhere unless she really does have a virus and can get over it. I can already see a beautiful picture, Kamie and Kim wearing their wedding dresses and sitting with Kristen on her bed. 
  
I am including a couple of the girls engagement pictures
 because they are sooooo cute!
Thank You to all of you who continue to send Kristen cards, letters and gifts. As she opens each card., there is a smile upon her face. Thank You to family and friends who continue to call and check on us. I could never get through this without all of you.


Sunday, June 27, 2010

Tomorrow is a gift

Another busy week. Wedding plans are coming along, good thing since the wedding is in 10 days. Thank you so much to my sister in laws for throwing the girls a bridal shower.
What would I do without family.
Kristen is just where she wants to be. Cozy in her room. She is still holding her own as far as platelets and blood go, no transfusions as of now. Her numbers are dipping so it won’t be long before she needs some blood products. Kristen has had a low grade fever all week. She could be working on an infection or maybe it’s the leukemia. She has lost 3 pounds and seems to be more tired and worn. Yesterday Kristen was light headed and dizzy. Luckily Katy was right behind her as she was heading up the stairs, she was barely able to pick her up as she is 8 months pregnant. I am pretty sure by what Katy explained that Kristen fainted or was very close to it. I have decided that unless I absolutely have to go somewhere I will be staying home with Kristen. I know there are a few things I have to do for the weddings, but if I can make a list and let someone else take care of things then that is what we’ll be doing.
I still find myself stumbling in the thick fog trying to process all that is going on, especially with Kristen. Someone asked me what I thought would be easier, losing your child suddenly or being told that your child is dying of cancer and has 3 months to live. She began to say probably the second one because you would still have time to make memories. I quickly replied that if you haven’t already made the memories then it is probably too late. I have no regrets with Kristen. The memories have been made. Now we can sit here on her bed and do the things she loves, watch Disney channel, eat pretzels, look at pictures, drink coke (for her it’s caffeine free) and stay up till midnight
 just because we can.
 We can paint our nails, order pizza, and look through old magazines.
We may not be going skydiving or Rocky Mountain climbing, and for sure we won’t be riding any bulls, but we are going to love deeper,
 and speak sweeter,
and live like tomorrow is a gift.
Because it is.
.

Monday, June 21, 2010

Life comes at you...ready or not

This little muffin loves to play this little game with me every night. I tell her it's time to lay down and go to sleep, she lays on her side and firmly plants her elbow in her pillow and says, "I can't!" She then waits for me to tickle her and finally she agrees to put her arm down and lay down. We play this game EVERY night.
 Our bedtime ritual is getting longer every night.
The results of Kristen’s bi-weekly blood tests came back early this afternoon. I was expecting her to need blood or platelets but it looks like she can slide for a few more days. I was happy to hear that the percentage of leukemia cells in her blood had decreased. That means that the chemo pills are helping to slow things down. Our insurance will not pay for the home health to draw Kristen’s blood so we usually have to drag her out to the doctors just for labs. After twisting a few arms they have finally agreed to let me draw her blood and drop it off at the lab. Kristen was happy
when I told her we could stay home today.

I have wondered a few times this past week if I might be crazy to think we can pull this wedding off in just a little over 2 weeks. Not to mention 2 weddings. Today I decided that crazy I am. I don't even sew and I spent several hours today sewing 24 yards of tulle on Kim's bridal slip. And the stamps pictured below, I had to make a special trip to the post office just because I couldn't put the forever stamp on the invitations, I wanted something cute. These purple pansy stamps are just what I needed. We are all working hard trying to get organized and pull things together. As far as the wedding plans I think things are coming together. I do have one issue. I'm a cake decorator. That's what I do. I make wedding cakes. Well, I kinda think I might be lucky to pull off the wedding and then throw in 2 wedding cakes and I just don't know. I could never pay someone to make a cake when I can do it myself. What to do.

Just when you think you might have things under control something else is thrown at you and you have to stop and think Ok enough already. Katy, my oldest daughter who is already married with 3 children , is having her fourth child at the end of July. Kristen is excited to attend the birth. Katy called me last night to ask if I thought it was possible that she was having contractions. I had to laugh and and say are you kidding, with all that is going on in our lives you probably are having contractions. She had an appointment this morning and she lost 3 pounds and her stomach is still measuring what it was 2 weeks ago. The doctor wanted to do an ultrasound to make sure things were still ok. It looks like the baby weighs about 5 pounds and it all looks good. About an hour ago Katy was here and said, Something is up with this baby, I keep having these pains.  She then proceeded to tell me that she has nothing ready for the new baby. Not even a new blanket. She has the material for 2 quilts but hasn't had the time or energy to get them finished. So tomorrow in the mist of florist appointments, tulle, and stuffing envelopes I guess we will also be tying a quilt for the new baby just in case she decides to arrive early. And as for Kristen, she will be in the family room dancing around and singing because that is what she does every morning.
We'll all look at each other and smile.

One more thought, maybe I should stop worrying about these cute purple pansy love stamps and start baking some cakes.

Sunday, June 20, 2010

Kristen's Daddy

Happy Father's Day
Half Moon Lake 2009
2007
Jackson Hole 2009
Kristen's 1st Birthday

Both Kristen and I are blessed to have this guy taking care of us.

We had a good weekend. Kristen is still feeling good, aside from the tiredness that she feels. I am anxious to see her blood counts in the morning.
She will probably need platelets either tomorrow or sometime this week.
 We have moved our daughters weddings up to July 7th. That's right...a little over 2 weeks. Their weddings were scheduled for August 18th. My husband decided that August probably would not be a good month for Kristen. He gave my girls a choice, either postpone your weddings or move them up. They both decided they would like to move them up in hopes that Kristen would still feel well enough to attend. They wanted her to be part of their special day. I think Kristen has a special calling that day,
"Maid of Honor"


Thursday, June 17, 2010

Every day matters


This past week I have been forced to face the brutal reality of what lies before me. I have not let a moment pass without thinking about the fragility of life. We are doing everything we can to make every moment count. My husband asked Kristen if she wanted to go anywhere. He mentioned Disneyland, to the ocean, camping on a lake, or even just to Salt Lake to stay in a hotel. Her reply was rather simple,
"I want to stay HOME!"
Home is where we'll stay.
Others have asked what they can do or buy for Kristen. Kristen has everything she has ever wanted. She doesn't need a thing because Her wishes and needs are simple, a ream of paper, a pack of new markers, a pair of scissors, and a box of Better Cheddars at her side. She also likes plenty of cold caffeine free coke, apple juice, orange juice and small cartons of milk in the fridge. She likes her drawers full of clean neatly stacked clothes. Each morning she carefully chooses her outfit for the day. She chooses her socks first and the chooses an outfit to match her socks. If her hamper is looking full she doesn't waste any time telling me that it is time to do her laundry. She does enjoy looking at the cards and letters that so many have sent her. There are many lessons to be learned from this Princess of mine.
Simple is Good.
She is everything good in the world. She is lovely, she is gentle and she is meek. 

As for me, I find myself having to step outside for a minute and wait for the tears to pass. I just seem to get my feet on the ground and the the flood of emotions take over once again. I am thankful for family and friends who continue to support and carry me. 
Each night as I go to bed I offer up prayers of gratitude for another lovely day with my girl. I awake in the morning with an eye doing good and enjoy the profound and never ending blessings of a new day. 
What we do today matters.  

These pictures were taken at midnight. As you can see Kristen loves her sisters
and they love her.
I love that she is laughing her guts out.

Friday, June 11, 2010

Where do I begin...


Once again I find myself sitting here trying to find the words. I’ve sat here many times and the tears start and I have to walk away. After hearing last Friday that leukemia blasts were again found in Kristen’s blood stream, the events of this week have played out as I expected them to, with the exception of the heart and gut wrenching pain that I have felt. It is much worse than I could have ever thought.

The results of Kristen’s bone marrow biopsy; 48% leukemia blasts in her bone marrow. For the moment her spinal fluid was clear, which means that as of now it has not spread to her central nervous system.
The love and care that Kristen has received from both the bone marrow transplant team and the oncology team has been amazing. Robert, one of the physician assistants, as he was examining Kristen, leaned over and whispered to her, “Did you know that you are one of my favorite patients?” I think she is pretty much everyone’s favorite. Everyone is sickened by the news of her relapse. Everyone has been diligent in caring for her and trying to find a cure that would work for her. Great love and care has been shown toward her by both the doctors and nurses and I will forever be grateful.
We find ourselves needing to make some decisions concerning her care. Decisions a parent should never have to make. Although the direction we should go is pretty well outlined by her doctor, the ultimate decision is up to us. After days of tears and prayers we are forced to face the reality of what is now before us.
The leukemia cells have shown their resilience and their furry.

Kristen has been started on oral chemotherapy. This chemo is not expected to put her in a remission. It is to kill off some of the leukemia cells and make her more comfortable. The doctors feel that pulling her back into the hospital and restarting intense chemotherapy would only be a great disservice to her. We were told that she may have 3 to 4 months. I can not believe I just typed that. This is all beyond surreal. This sweet child of mine has already endured more than any child should ever have to. I keep wishing I had something else to share, like maybe this is all a big mistake. I find myself stopping dead in my tracks and taking a deep breath and fighting the urge to throw up. Then I look at Kristen and think this girl doesn’t deserve this from me. I continue to try to be strong because she deserves no less. Kristen inspires me to go on in spite of the overwhelming feeling of despair that has encompassed me.
Her faith strengthens my faith and her resolve reinforces mine.
Are we giving up? NO. There is always room for miracles. There is always hope. There is always something to marvel about and be thankful for. There is beauty and ingenuity all around us.
We will not allow this disease to harm Kristen’s beauty, her grace or her dignity.
Kristen has once again bestowed upon us the gift of perspective, the lessons of fragility. and the meaning of life and what really matters. For now we will soak in the moments of our time together. We will pray for peace and understanding as we again pass through another moment of uncertainty. I would like to thank all of you from the bottom of my troubled heart for your kind words and your support. I could not possibly get through this without my amazing family and friends.

Tuesday, June 8, 2010

Hoping for yet "Another Miracle"

It has been a very long 4 days. Many tears shed.  I was able to talk with Kristen’s nurse practitioner, Brenda, yesterday. It was confirmed that there are 11% leukemia blasts in her peripheral blood. Her chimerism test from the previous week, also on her peripheral blood, came in at 96% donor. Brenda said she was a bit surprised at the relapse given the high percent of donor on the chimerism test.

Kristen will have a bone marrow biopsy in the morning. We are still hoping she will develop Graft-versus-host disease (GVHD) and this might help fight off the leukemia cells. Brenda said that we would have to wait for the results of the bone marrow biopsy before we could come up with any type of a plan. Hopefully the disease hasn’t progressed too rapidly and we can give her a little time to see if GVHD will kick in. Otherwise, it appears that we are back to square one.

Last November when Kristen relapsed we were told that her only chance for survival was a bone marrow transplant .Here we are back to that same place we were when we started 21 months ago. I really don’t know where we stand. But I know it is not good. Not good at all. I realize that a second relapse after a bone marrow transplant is not a good place to be. I know our options are getting fewer.
I have to remind myself several times a day that this is Kristen we are talking about.
Our Miracle Girl, Our Rockstar, Our Warrior Girl, Our Angel
She has always done things her way. I am sure this new challenge that has been placed in front of her will be met with the same
courage, determination and resilience she has always shown.
And today we are once again
“Hoping for Another Miracle”
We celebrated Kim's Birthday yesterday. Kim is the most independant of all of my 6 children. She always sets goals, makes lists and accomplishes everything on her list. She dearly loves Kristen.
We all love Kim!
Yesterday Kristen wanted to go to the store. This is rare as she usually only wants to stay home. She said she needed paper and a movie. I took her to Kmart as our local Kmart is never busy and I knew I wouldn't run into many germ carrying people. Kristen walked around the store and looked at everything. She loaded up the cart with whatever she wanted. Her favorite aisle is always the school supply aisle. Today, she got her purse and headed to the door. I asked her where she thought she was going and she again replied, "The Store, I need a movie." So off we went again.
I'm pretty sure someone forgot to tell Kristen that she is sick.
Please say a little prayer for our girl


Friday, June 4, 2010

A Milestone?

Today was supposed to be a special day. A day we had been looking forward to for a long time, 100 days in fact. It was Kristen’s 100 days since transplant.
The 100 day mark is considered a standard transplant milestone.

Two of my grandchildren share June 4th as their Birthday. Today we would celebrate Kristen’s accomplishment and the 3rd Birthdays of Jordan and Ellie.

We started the day off with Kristen’s weekly clinic appointment. Her labs were drawn and the doc came in and said her numbers were good and sent us on our way. We were there just short of an hour, which is a record. I was glad as there was much to do this day.
We arrived home and Kristen was a bit worn so she headed up to her room. She got herself organized, put her pajamas on and sat upon her bed to catch the latest on Disney channel. I headed straight to the kitchen to make a Mickey Mouse cake for the kiddies birthday.

There was much talk between two of my daughters as we are planning a double wedding for them on August 18th. Crazy, I know, but they both planned to be married in August. Jokingly, I mentioned that I could never pull off 2 weddings in the same month. If they both were going to get married in August then it would have to be on the same day. The more we joked about it and talked about it, the more we decided that it sounded fun. So a double reception it would be.

We were all busy going about the day’s activities. The phone rang and I could see it was the clinic calling. I was sure they were going to make more adjustments on Kristen’s meds. I picked up the phone expecting to hear Brenda, the nurse practitioner, but instead I heard, “Mrs. Kirton, This is Dr. Meeker.” I immediately replied, “No I don’t want to talk to you, If you are calling it must be bad news.” as to which he replied, “I’m sorry, We have found what we believe to be signs of leukemia cells in Kristen’s blood.”
There you have it…Our big day of celebrating came to a fast halt.

I often talk of the boat us cancer moms are sitting in. Knowing well that someone is going to get thrown off, it could be any one of us and any time. Well today, I was thrown off and I fell hard. I do not know if I have the strength to swim to the shore. I seriously do not know how I can go on. At the moment I am trying to see any glimmer of hope. But I don’t see it. Kristen will have a bone marrow biopsy at the beginning of the week to confirm what we believe has happened. Relapse. Then we will sit with the doctors and discuss our options.
Another heart wrenching day.
Once again I ask you to please
Say a little prayer for her.

Tuesday, June 1, 2010

A Special Gift

To Elizabeth in Minnesota,
How did you know that pink and purple were Kristen's favorite colors? The afghan
you made for her is beautiful! She was very excited to spread it out on her bed. The afghan is much more beautiful than it shows in the picture. I already know that this will go with Kristen wherever she goes. Thank You so much for your kindness!

We feel so blessed to have
'Angels Among Us'
So many kind hearts doing kind things.