Hope

Yesterday Kristen finished up 3 days of high dose, intense chemotherapy.  Now we wait for a couple of days and do it all over again.  There was talk that we could go home for a couple of days but since Kristen has had a fever and the fact that she already has no white count we are staying for the duration.  By the looks of things we might bust out of here 2 weeks before Christmas.  We will  be home for about 2 weeks then come back and start round 2.  It already feels like we have been here for months, in fact it feels like we never left.  As I walk the halls of our unit I run into some of our previous nurses, they stop dead in their tracks and just says, "What are you doing here?" Everyone has been very kind and feels terrible that Kristen is back. It is kind of strange here in the cancer unit.  The doors to the rooms remain shut, and the blinds are pulled.  Behind each door is a warrior fighting a battle.  A battle no child should ever have to fight, but fight they do. We as parents of these special children walk the halls with somber faces trying to make sense out of all of this.  But it doesn't make sense. It's not fair.  We are in the mist of a horrible storm that is raging within our hearts. We are looking for a sign that there might be better days ahead.  A clearing in the storm.  That clearing comes in the form of hope. For me hope is an abiding trust that the Lord will fulfull His promises to me. It is believing and expecting that something will occur. When you have hope you work through trials and difficutlies with the confidence and assurance that

all things will work together for your good.

Hope helps conquer discouragement.

Each day I continue to Hope for Another Miracle.

Thanks to all of you that have sent Kristen a card or note.  She loves opening the cards.  She gets bored sitting her day after day and the cards give her something to look forward to.

Keep them coming! 

Special thanks to her sweet grandma who has put a card in the mail almost every day!

Julie-She especially loved the card you sent that plays music. 

She keeps opening and shutting it.

The picture is of Kristen and her BFF, Audrey.  She came to visit Kristen and definately cheered her up.

Dilemma of sorts

Kristen had another shoddy day.  She plain doesn't feel good. She spends most of the day moaning with discomfort.  I finally talked the doc into letting her have some tylenol.  It helped for a few hours. They do not want her to have tylenol because it could cover up a fever, but she can have oxycodone.  Oxy is too strong and knocks her out and makes her sick to her stomach.  Kris broke out in a rash today on her arms and legs, also more fevers.  Bring on the benedryl.  Here's the dilemma for the day...Kristen's body has seen so much chemo in the past years that is is somewhat difficult to find drugs that the docs believe will kill the leukemia and put her in remission.  Some of the drugs she can't have because they have a lifetime limit as they damage your heart, and you guessed it..she has reached her limit.  Other chemo drugs she is either allergic to or had a reaction to.  There is a drug call L-asparaginase that has been on her chart as an allergy since the mid 1990's. No one really remembers what kind of reaction she had so she is currently being pre-treated with hydrocortisone and benadryl as she is receiving a shot of L-asparaginase at 9 in the morning.  They are making sure the docs will be here "Just in case"   Not looking forward to tomorrow. 

Kim drove up from school for a weekend visit. Kristen was happy to see her!

We have a button!

Thanks to Feisty Kaelyn's dad Kristen has a button! It is in the side bar, you all know how it works.

Thanks so much!

A quick update on Kristen...She spiked a fever tonight which means blood cultures and antibiotics.  She was feeling really awful all day today. The chemo drug ARA-C that she is receiving is famous for causing fevers, however, because her infection fighting cells are gone the docs can take no chances, so she is being treated as though she has an infection.  Her blood pressure was 80/37, so she is also receiving extra fluids to try to get it up.

Thanks again to Kaelyns family for the button and to all of you for your kind words and prayers.

We really really really HATE cancer.

Less than 24 hours into round one and we are once again reminded how much we really hate this.  The puking has begun, eyedrops every 3 hours and bathroom every 2 hours and now it is time for another dose of chemo. It always amazes me when the nurses come in to give chemo they are wearing a protective gown, rubber gloves and safety glasses but yet the stuff they are protecting themselves from is going right into Kristen's bloodstream. Doesn't seem fair.  I call chemo a necessary evil. We are putting some more anti-nausia meds on board so hopefully that will help.  Kristen is already worn down as you can see in her pic.  appetite gone. energy gone. infection fighting cells gone.

I have to remember that Kristen has proven 3 times already that she is stronger than cancer.

Please continue to pray for our little angel.

Ready or Not...

Kristen is doing well tonight.  She seems to be slowing down a bit, I suspect the leukemia is catching up to her.  Kristen needs platelets before she can have the surgery.  In the morning we will first go to the oncology clinic for labs and platelets and then to surgery to have the central line placed.  After recovery she will be admitted to the floor.  I suspect that chemo will begin shortly thereafter. 

I have been amazed by the outpouring of kind words and prayers that have been offered in her behalf.  Thank You!  Many have asked what they can do to help Kristen.  Kristen LOVES to get mail.  I thought it would be a great idea for anyone that would like to cheer her up to send her a card or a note. 

Kristen Kirton

P.O. Box 87

Draper, Utah 84020-0087

We decided to have a quick  family picture taken before Kristen's hair falls out. 

Rich and I are in the middle, My youngest son, Ryan is on the far left, Rick, my oldest son is next to him with his wife in front and their two children, my dauaghter Kamie  is next to me with Kristen in fromt of me, my youngest daughter Kim is next to Rich, then my son in law and my oldest daughter Katy at the end with their 3 children in front. 

Hoping for Another Miracle

For the past few days I have been hoping that Wednesday would never get here. and now it is staring me in the face.  I have been busy trying to get things done. I went shopping and bought Kristen new pajamas a robe and some really cute froggy slippers.  Earlier today I told Kristen the news...that she was very sick AGAIN and that we needed to go to the hospital to get some medicine.  I told her that we were going to sleep there and the first thing she said was a great BIG "I don't want to!"  She then continued to tell me that she did not want a central line.  I showed her the bruise on her arm and said that if we had the central line she wouldn't have to get poked and have an IV.  She was mad at me for the rest of the day.  Whenever someone would walk into the room she would say, "I'm mad at mom, she's mean."  Finally after several hours she warmed up and I think she likes me again...until Wednesday when I begin to pack our suitcases.

The Festival of Trees is an event that is held here in Salt Lake City to raise money for Primary Children's Hospital. Anyone can donate a decorated tree.  Several months ago  my daughter, Kamie, decided she was going to donate a tree to honor Kristen.  She had to register her tree and choose a name.  She chose to name her tree "Another Miracle." She chose this name because Kristen was once again cancer free after battling cancer her third time.  Friday when we got the confirmation that Kristen had indeed relapsed Kamie decided to rename Kristen's tree.  She said she was going to add "Hoping for" to the name.  The tree will now be called

 "Hoping for Another Miracle" 

That is just we are doing.  Hoping for another miracle.  I know that we once again have an insurmountable obstacle in front of us.  The road is dark and it is long. However, we have been blessed with this bright beautiful light.  Her name is Kristen and I know she will once again light the way for us. It is her magical light that gives us hope. 

it's not good

I have sat down at this keyboard several times in the past few hours, each time the tears start up again and I have to walk away. It is hard to find the words.   Kristen had a bone marrow biopsy and also a spinal tap this morning.  If you look closely at her pic you can see the bruise from the IV.  It was confirmed that Kristen is indeed full of Leukemia cells.  It is in her blood, in her bone marrow and also in her spinal fluid.  Acute Myeloid Leukemia (AML) has returned without warning.  I highly recommend that you all grab your children and hold them a little  tighter than you usually would as there is a monster on the loose.  This monster does not discriminate...he takes the old, the young, the bold and the brave.  He rips the hearts from mothers and fathers as they stand helplessly by.  But because Kristen is beautiful, corageous, and brave, we at the Kirton household will once again stand arm in arm and put on the armor and we will fight back with every ounce of our souls and we will

NOT stop fighting. 

We were told today that the only way  Kristen stood a chance at a cure would be to have a bone marrow transplant. She would first need to reach a full remission which would take 2 to 3 rounds of Chemo...which translates to 3-4 months in the hospital. and then several more months for the transplant. Oh and by the way since this is a reoccurance her chances of reaching a remission just went down significantly, 25%  of AML relapses don't ever reach a remission, and because she has

down syndrome a bone marrow transplant is extremely risky. 

So there you have it...it's not good.

I have yet to tell Kristen of her plight...that next Wednesday we will once again be checking into the Hospital for a VERY extended stay.

Please Say a little prayer for her.

Kristen needs your Prayers

I hoped this day would never come. As a cancer mom the fear that you might hear the R word NEVER leaves your mind.  This time I am talking about the word RELAPSE. I hate hate hate that word.  You would think 3 times is enough one time is enough... better yet no child should EVER have to deal with cancer.  It looks like we are are about to hit it for the 4th time.  I seriously can't believe i just said that.  One month ago Kristen finally had some good blood counts.  Going into today for a routine blood test seemed just that...routine, but as the results came in several hours later it was anything but routine.  Kristen has been feeling GREAT.    Really there has been no outward appearance of the MONSTER that has once again taken a hold of her body.  As I type this I can hardly see the keyboard through the tears, but I believe in the power of prayer and I have met many friends here and tonight Kristen needs prayers.  The doctor called this afternoon with the results...yeah the doctor that was the first sign that something was up.  I think his words went something like this..."I am calling with the results of Kristen's blood test, the lab called and they found blasts in her blood, so we will need to do a bone marrow biopsy in the morning to confirm it."  In my heart it's already confirmed, I mean blasts in her blood is hard to mistake for something else.  I have no Idea what the plan will be or even what we are dealing with I just know that my little angel needs your prayers, so please Say a Little Prayer for Her. 

Some Halloween FUN!

Last Halloween Kristen and I were in the hospital just starting round 2 of chemo.  She had a spinal tap in the morning and she wore her Hannah Montana wig down to the RTU (rapid treatment unit).  She was in good spirits, but because her ANC was below 500 she could not participate in any of the activities that the hospital had.  We spent the day in our room receiving chemo.  This Halloween was much better!  Kristen is healthy! She wanted to be Sleeping Beauty, so we found her another wig and a princess dress.  Her grandma has a Halloween party every year so we got lots of pictures of cousins, aunts and uncles.  I went for an easy costume "Octomom" .  It was a fun day. 

Sleeping Beauty

Octomom

My 5 Grandkids...Aren't they cute

Kristen's little brother Ryan

Aunt Becky and Aunt Carrie

Cousins

Hailey and Kim

One of Kristen's fav cousins Kylie and her husband

Grandma and Grandpa dressed as Grandma and Grandpa!

Aunt Vickie

One for Down Syndrome Awareness

October is soon coming to a close and I have yet to post something to contribute to Down Syndrome Awareness month.  I have been thinking about what I might say... so I started looking through the many articles I have collected over the years that had anything to do with down syndrome.  Some make me so angry and others put a smile on my face. 

In March 1995 there was an article in our local newspaper about the advancements in dectecting down syndrome in the unborn fetus.  I read the article which began like this...

"A Utah doctor has pioneered a technique for safely determining whether an unborn child carries the genetic burden of Down syndrome.

Down syndrome is a frequently severe form of mental retardation. Often accompanied by physical debilities, it is often linked to the age of the mother. The older the woman, the more likely she is to have a Down syndrome child.Because Down syndrome is one of the great tragedies that can strike a family, many pregnant women want to know whether their unborn children have the disorder. But until now some - even high-risk women in their 40s - were reluctant to use the only technique that could give them answers."

here is the link for the rest of the article: http://www.deseretnews.com/article/407461/UTAHNaposS-TECHNIQUE-DETECTS-DOWN-SYNDROME-NONINVASIVELY.html

I have highlighted the part that got my blood boiling.  I seriously called the Deseret News and asked If I could please speak to Joseph Bauman.  I let the guy have it!  I told him in no way was my daughter a tragedy! That she was the best thing that had ever happened to me and my entire family.  He continued to disagree with me.  After arguing with him for about10 minutes I decided he was not worth my time.  Unfortunately, his perception of down syndrome is shared with many as our little angels are being aborted every day. Sad.

On a more upliftiing note... I am sure you have all read and heard about Gene Stallings, former Alabama football coach, who had a son with down syndrome.  He is a great guy and has many uplifting stories.  Here is a link to an article in People Magazine from 1998  http://www.people.com/people/archive/article/0,,20124379,00.html

Since then his son Johnny passed away.  Gene has since shared many more stories of how Johnny has blessed his life.  He has done radio interviews that are worth listening to.

 23 years ago my beautiful baby girl showed up with a little something extra...a simple little chromosome. Kristen has taken us on a journey, one that wasn't planned or even expected.   There has been obsticles and trials each of which Kristen has met with bravery and dignity.   We know that Kristen was placed in our home and in our hearts for a very special purpose.  Our lives have been enriched by all the special gifts Kristen has brought with her.   Kristen is brave and she is beautiful.  We are forever changed for having her in our family.   Her presence has filled our home with much happiness.

The picture is Kristen at 2 1/2 years just a few months before her first leukemia diagnosis.  It was a sad day when that beautiful blonde hair began to fall out.

It's FREEZING!!!

oh so sweet...

First Beyonce, now Miley

Both sing to little girls with cancer.

http://www.youtube.com/watch?v=6lxIUPPGQNM

and life goes on....

Kristen and I are home tonight. We have been spending most of our days and some nights at my mother's house.  We have been rather busy the past 2 weeks.  Not hardly time to even gather my thoughts and realize what just happened.  Since my dad passed away unexpectedly 11 days ago, everything has been almost like a dream.  I seriously wish someone would pinch me and wake me up.  We are all almost like walking zombies.  When we get the chance to sleep, we can't.  Our minds quickly fill with thoughts and memories and wonders of how we really need to find a "new normal" but we just can't.  My dad was such a big part of our lives.  We would talk to him at least one time and sometimes 2 0r 3 times every day.  We would visit him or he would come visit us once or twice during the week and every Sunday at 4pm you would find us there at his house.  He truly loved Kristen and would do anything for her.  I remember calling him a little over a year ago to tell him that Kristen's leukemia had returned.  First he said a few swear words and then the phone went silent and I knew the tears were flowing.  My dad worked for the county sheriffs office for almost 30 years. He was well respected in the community and at work.  It was always a treat as a young girl to get in his police car and turn the sirens on.  My dad taught me many life lessons of which I will always be grateful for.  He was a tough guy and not just demanded respect but expected it.  Not only did  I need to respect my parents, but that my kids respected me and that we respected the grocery store clerk or the waiter or waitress.  He never thought he was better than anyone else.  He could have lived in a larger house or driven a more expensive car, but he chose to share what he had with others.  You always knew where you stood with my father.  He taught me toWork before you play and save before you spend.    Although my dad died unexpectedly, I believe he had no unfinished business, no regrets and he lived a good life.

Kristen was taken back by the death of her grandpa.  I told her that her grandpa had died.  She keeps asking the question, "Why?" She asks me several times a day, "Where's Grandpa?" I tell her and she says, "Oh!" Then an hour later the same questions are asked again.  As we entered the mortuary she pulled back.  I held her hand and asked her if she wanted to see her grandpa.  She said NO! She could see the casket across the room and she quickly ran the opposite direction.  I found a couch for her to sit on that was across the room.  She was comfortable there and was looking from a distance.  Kristen sat quietly during the funeral.  As we proceeded to the cemetery she continued to ask the same question..."where's grandpa?"

I hope she is ok.

Life goes on... My youngest granddaughter turned one this past week. We took her and her brother to Build a Bear. Of course Kristen chose the Jonas Brothers dog.

Still no words...But a few pictures

Kristen and her sisters after the funeral

The "Honor Guard"

21 Gun Salute

The Pallbearers (grandsons) paying last respect

I really have no words...

Kristen and her Grandpa

My dad, Kristen's grandpa unexpedly passed away yesterday.  I am so thankful we were able to visit with him yesterday morning.  We picked up my mom to take her to the store and my dad walked out to the car, like he always does, gave Kristen a dollar and a high five.  A few hours later he was just gone.  At the moment it appears he had an Abdominal Aortic Aneurysm.  I really cannot even speak, so I thought I would post a couple of pictures for now and just say that I love my dad and I seriously don't know what I am going to do.