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, March 27, 2010

So here's the proof...

Proof that Kristen doesn't sit up in her bed all day.
Kristen has spent most of her time in her pajamas the past few days. She gets dressed and  all ready for the day comes down to the family room and organizes her stuff (You'll notice her beads there on the couch) and then before I know it she is back upstairs getting her pajamas on and sitting in her bed. I thought I really need to get a picture of her doing something besides sitting her bed.
 I have been a bit worried as she seems to have no energy at all.
She gets completely wore out just doing the smallest things.
Hopefully her energy will return soon.
Easter is coming and that means
tons of fun and tons of pictures cause we love to party.

Wednesday, March 24, 2010

quick trip to the clinic

Kristen's appointment at the bone marrow clinic went well. She is doing what she does best, being a rockstar.  She will continue on the IV fluids for at least another week. Next Wednesday Kristen will have a spinal tap. We are not looking forward to that, but it is what it is.
We got home around noon and this is where Kristen went.....

...right up to her room. I guess the trip to the hospital wore her out. She loves to be  in her room. She doesn't sleep, just sits on her bed, organizes her things and watches the Disney chanel. In the next week or two I am going to start taking her for a morning walk at the park. We love Spring and the fresh air and short walks should do her some good. The docs said not to expect much from Kristen for several weeks, even months. It is perfectly normal that she wants to rest up in her room.

Sunday, March 21, 2010

We need a bigger basket...

Today is World Down Syndrome Day. It is a day to promote research, awareness, and promotion of the interests of people with Down syndrome.
Today I will be promoting this little muffin....

These are some of the cards and letters Kristen has received over the past few months.
As you can see, we need a bigger basket.
Thank You so much to all of you that have sent
 Kristen a card or note.
She loves her mail!

Kristen received another package from her friend Sarah It was this cute St. Patricks Day shirt.
Thank You Sarah! It is darling on her.

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.
I haven't shared Kristen's birth story here. That will be saved for another day. I have one as we all do. No, I didn't know before Kristen was born that she had Down syndrome. I was 25 years old and Kristen was my third child. I remember some of my biggest fears...what happens when she is 13 and all the girl stuff happens, and what about when she is 20, and 30 and what if..... Who will take care of her when I'm not here. I am thankful that holding that sweet child in my arms put my fears to rest. I learned then that it would take steps, even baby steps, this was going to be a journey for all of us, one that required living moment by moment. Live for today and don't borrow trouble from tomorrow. That is exactly what I have done. Your child doesn't all of a sudden go from being 2 to 23. It is gradual and as they grow, so do we.
We grow with them and we learn right beside them.
Kristen continues today to touch many lives just as she did 20 years ago.
 She radiates love and people are drawn to her.
She is an example of bravery.
She continues to move forward, No matter what.
We could all learn something from her.

Saturday, March 20, 2010

Lovin Life

Kristen had a clinic appointment yesterday. I wasn’t sure I would get her out of the house, but as soon as I told her that we weren’t going to sleep there, she walked out of the house willingly. Well, sort of, seems her legs muscles are sore and she can hardly walk. It happens every time after a long stay in the hospital. She is always so excited to be home that she dances around quite a bit. She’s OK for the first day then it hits. For the next few days I carry her wherever she wants to go. I’m getting pretty good at it except I usually need a back-up for up and down the stairs. The clinic appointment went well. Kristen’s blood counts continue to rise. She is still low on magnesium and a couple other things, so the IV fluids will continue. She is on the fluid for 10 hours a day. She has another check-up on Wednesday. It will be day +28 (28 days post transplant) some of her meds will be dropped and others added. I found out yesterday that she will receive 4 lumbar punctures (spinal taps) 2 weeks apart for 8 weeks. This is where they will put chemo in her spine and draw out spinal fluid to check things. When Kristen relapsed in November, she tested positive for leukemia in her spinal fluid. This is mostly a precaution to make sure it is still clear as the other chemo doesn’t make it to there. She really hates these. She doesn’t like being put to sleep and then she is sore for a few days
 and usually nausea comes with it.
She’ll get through is just like she gets through everything else.

Kristen continues to amaze everyone. She does things her way, pushing forward, moving mountains, whatever it takes to get back to the place she loves, HOME. And here we are,
getting a taste of normalcy back in our lives. And we both love it.

I am so grateful that our prayers have been answered. We have has many spiritual experiences throughout this past year and a half. We know that Kristen has been blessed and watched over. There has been miracles happen before our very eyes. I am so thankful for the many prayers that have been offered in Kristen's behalf throughout the world. Many different beliefs and religions have been brought together for the sake of one special little girl. It touches my heart to hear of the children that are praying for Kristen. There is nothing like the faith of a child.

Being a tease at the clinic yesterday

Wednesday, March 17, 2010

Engraftment and HOME!!!

Happy St. Patrick's Day
Thanks to the kind person who made and donated the
pillow cases to the children.

Yeah for Kristen!  Her blood counts have been on the rise for the past few days, which means ENGRAFTMENT!
Her brothers bone marrow has found it's way and is
producing healthy cells.
We were able to come HOME today!
Kristen is still quite sick and is expected to be so for quite some time. She will be seen in the bone marrow clinic two times a week for a while. If she gets a fever or any illness at all, then we are right back in the hospital. She had to come home on IV fluids as she is not drinking enough. She is hardly eating. Hopefully her appetite will return soon.
Thanks for all your kind words and support.
Kristen received many more cards and she loves each one of them.
I tried to get a picture of all of them hanging on her board, but I couldn't quite get them all.
Home Sweet Home

Sunday, March 14, 2010

A Long Week

I was starting to wonder if this week would ever end. I shouldn't complain, not even a little. I am told daily that Kristen is right on schedule and doing just what the docs expected her to do. In fact, this phase for most children lasts up to 2 weeks. We were able to get Kristen off the morphine pump yesterday. Her white count has helped the sores throughout her GI tract begin the healing process. She is still only eating a few bites of soup every day, but at least she can swallow. She was not able to swallow or even talk for the past few days. Last night as I led her to the restroom, she passed the mirror and stopped. She rubbed her head and said, "My Hair!" Then she let out a grumble of sorts and then a whine and a repeat of "My hair!" She has been so out of it that I guess she didn't notice that the little bit of hair she had was falling out. I reminded her that the medicine makes her hair fall out but it also makes her get better. I told her I would buy her some new hats and she seemed to understand. We are hoping for a good week. Engraftment could be on it's way, which will mean one step closer to home.

Thursday, March 11, 2010

A Rockstar...

First the picture... I had just given Kristen a shower and changed her sheets last night about 11pm, I heard a little snicker out of her and turned around and this is what I saw.
I think she's been secretly  taking yoga classes.

Now you won't believe me when I tell you that Kristen has had a difficult week. The sores in her mouth, throat and who knows where else have gotten the best of her. She has not been able to eat or drink a thing or even swallow. She has been on a morphine pump since Sunday. Yesterday she had a little sparkle in her eye, and sure enough she had a white count. Not huge, but enough to start attacking the sores.
She even had a few bites of soup in the afternoon.
The white count is the first sign that engraftment is coming. That means her brothers bone marrow has found it's way and is producing healthy cells. Yesterday I ran into one of her nurse practioners in the hall and he had heard the news that Kristen was starting to engraft. He said,
"Of course she is, She's our Rockstar!"
This morning during rounds the docs were of course pleased. Once again called her their "Star" patient.
I thought I would look up the new lingo for "Rockstar"
This is what I found...
A rockstar is a trendsetter, early-adopter and modern day
expert all in one.
A rockstar is the best of the best,
an expert in his/her own domain.
This rockstar status could apply to anyone at anytime. It only takes YOU to believe you are a rockstar.
There you have it..A Rockstar has been born.

From one Rockstar to another...Thank You Sarah

A fellow cancer mom 2 doors down made these tiles for everyone on the floor.
Thank You Lacey

Sunday, March 7, 2010

Battle Wounds

It was bound to happen. 
When you're fighting something as tough and mean as cancer, there are sure to be a few wounds.
We were warned about the intensity of the chemo Kristen received almost 2 weeks ago. It is designed to wipe her bone marrow clean, so her brothers marrow can find it's way and do it's job. Kristen's bed is full of little pieces of hair. I believe soon she will once again have a smooth shiny head. Notice the red marks on her arm? Those would be from the every 4 hour blood pressure checks and her low platelet count. And the little gray button behind her shoulder, that is know as a PCA, or morphine pump. The chemo causes severe mucositis, which consists of sores in her mouth, GI track and gastrointestinal irritation. Because Kristen no longer has a normal functioning immune system, she isn't able to heal from these sores very quickly. She has stopped eating and drinking as she can no longer even swallow as the sores in her throat are so bad. She is now on the morphine pump to control her pain. Tomorrow she will probably be put on IV nutrition until she can eat again. We are hoping these days will be short and pass quickly. For the most part, Kristen is in pretty good spirits as long as we keep the pain in check. We are so blessed that Kristen has the determination and the sheer power to survive all that life has dealt her. She continues to give me the knowledge that true courage and strength exist. I find myself getting anxiety over what the next few days and weeks will bring.
 I just want her to get better!
I keep reminding myself to live for today,
one day at a time and don't borrow trouble from tomorrow.
Please say a little pray for our angel girl.

Thursday, March 4, 2010

A Few Bonus Days

Kristen is hanging on like she does. We are at day +8, the docs expected things to go down hill fast on about day +3, so I figure we got a few bonus days of goodness. We’ll take em.

My 16 year old son , Ryan, is trying out for the baseball team at his high school. He called me yesterday looking for a ride to the ER. Luckily both Richard and Rick were home and able to get Ryan over to the doctor. Seems he made the team and broke his hand all in the same day. It was of course, his pitching hand. Hopefully, if he takes care of his hand, he will only be out for 3 weeks. Did I mention Ryan loves to play baseball and he is good at it. I was able to run home for an hour last night and check on him. His spirits are good and he still plans on going to all the practices. I told him to drink lots of milk, and he just looked at me like I was crazy, which at this point, I just might be.

It’s been a week and a day since the bone marrow transplant. Rick has done amazing. He was given a prescription for pain pills as he was expected to be in quite a bit of pain. Seems he didn’t need the pain pills, not even a Tylenol. Nothing. He took 2 days off work and rested and then he was right back at it.

The doctor is pleased with Kristen’s progress. He said things are going just as he hoped. Her counts are falling slowly and she is holding on to every single one of her
white cells as long as she can.
Which could be a miracle in and of itself.

The cancer beast strikes again. Yesterday I went in the parent laundry room, I saw one of my friend cancer moms sitting in the corner hunched over sobbing, another mom comforting her. It seems they are going home today. They have done all they could do for her 6 year old princess. Leukemia was just too much. She was ready for a transplant in December, just as they were about to proceed, relapse. And now once again.relapse. It isn't fair. As you walk through the unit today, most of the moms have red swollen eyes. We are all drifting in the same boat. We never know who is going to get thrown off next.
It could be anyone of us and we know it.

Some amazing person has been donating these cute afghans to the hospital. Kristen has had the pleasure of receiving 2 of them, which we love.
Too bad I couldn't get a smile out of her this morning.
Even without the smile she is still the cutest little muffin ever.