Blogging about life in Minnesota, raising our six kids with Down syndrome while battling Breast Cancer.

Be the kind of woman that when your feet hit the floor in the morning the devil says, "Oh shit! She's up!"
Showing posts with label DIPG. Show all posts
Showing posts with label DIPG. Show all posts

Thursday, June 21, 2012

Funeral Notice

Destany's Service will be held on Sunday at 
Good Shepherd Church
 (1407 Cedar Ave., Glencoe, MN)

 It is being done by the 
McBride Funeral Home in Glencoe 
(1222 Hennepin Avenue Glencoe, MN 55336)

 
ALL SERVICES will be at the 

Good Shepherd Church
3:30 Viewing4:30 Service


Following the service will be a potluck lunch (please bring something to share)
There will be no public internmentIN MEMORY OF DESTANY'S WISH FOR HER 7TH BIRTHDAY, PLEASE WEAR SOMETHING PINK.Flowers or cards may be sent to the Funeral home and they will deliver them to the Church.Destany's family thanks you ALL for your kind words and thoughtful prayers.

If you would like to help the family with burial costs, contributions can be sent to the address below, or using the chipin button at the bottom of this post.


To Destany
C/O Sandie Adams
2100 Blake Ave
Lester Prairie, MN 55354

or via Chipin

Tuesday, June 19, 2012

Can You Imagine

 A mother. A father. Every day fighting to keep their child alive. Every day, praying their child will get another chance. And yet in order for their prayers to be answered, another family has to say goodbye.

Some families live in the hospital. Their child on drugs and machines to do the work their organs cannot do. Waiting...waiting for the transplant coordinator to come rushing in. It's time. It's time for your child.

This afternoon families who must ALWAYS stay within two hours of their transplant center, who keep a bag packed at all times, who always have a pager on them, felt that sudden rush of adrenaline when that pager went off. THE PAGER. The one that tells them to drop whatever they are doing, get in the car NOW. Hurry...today MIGHT be the day a was found for your child.

And as they drive to the hospital praying this isn't another false alarm, they know. They know that somewhere, on their knees with grief, is a mother and a father of a child they had to let go. That mother and father made the choice to save them from the same fate.

Right now, at the very moment I type this, there are children, parents, families, who are driving back home. The disappointment. Today is not the day. Not for their child.

Because Destany's tumor was cancerous, her organs were rejected by whoever makes those decisions. Instead her mommy rocked her to sleep at 3:00 p.m. on Tuesday, June 19th, 2012.  Princess Destany Mariah Thomsen

Please pray for Destany's mom Melinda, her dad Joey, step dad Shaun, and Destany's little brothers.

Precious Jesus here I am
A gentle child your little lamb
Though I am not very old
I am ready to walk on streets of gold
Thank you for the time I had
Making memories with Mom & Dad
Bring them peace and comfort when they cry
And let them know its not goodbye
Bring them laughter and calm their fears
Let them know in heaven there are no tears
The pain is gone the joy is true
Let them know that I’m here with you
Hold me Jesus and take my hand
Walk with me thru the promised land
Let Mom know this was your plan for me
Let her feel a gentle breeze and know that it’s a kiss from me
Let Dad know of your plan too
Fill his heart with gladness too
For I love them Jesus and they love you
Hold them close when they are feeling blue
Keep them close to you and let them see
All the blessings you gave to me.
Loving parents, friends and family
Take me home Lord as I am
A gentle child your little lamb

Saying Goodbye to a Princess


Yesterday Destany went to Minneapolis Children's hospital to have her first radiation treatment. The only way to battle DIPG. Shortly before she was to be sedated for the treatment she had what appeared to be a seizure, or seizure-like event. She was admitted and an EEG run where no seizure activity was found. She was sedated at this point, so it was decided to go ahead and do the radiation treatment.

Unfortunately it was all just too much for Destany's brain stem. It just couldn't do the work it needed to keep her alive anymore. Destany was placed on life support. Sometime later she stopped having any response to pain and her pupils were no longer responding.

This morning when I arrived to the hospital they were removing her from the machines to see how she would do. As was expected, she was not able to breathe on her own. After seven minutes she was placed back on life support.

Melinda has decided to do what she can so another mother does not have to go through what she has today. Doctors spent today doing blood type matches so that another child might live even as we say goodbye to Destany. As I type this Destany should be in surgery. Tonight there will be several children to whom Destany has given life.

Sunday, Destany with her mommy Melinda.


Sunday


Sunday: Destany with her uncle Dustin and Papa Chuck

Sunday, Destany with her Papa Chuck and mommy Melinda

Sunday: Destany and her aunt Amanda...her second mommy. 

Diva Destany

Destany and her mommy Melinda

Sunday: Destany and her aunt Nicole

Monday, June 18, 2012

Destany: A Mother's Message

For those of you following my niece Destany's story, her mom Melinda asked me to post this message tonight.

destany is a very amazing little girl, and its not fair that her life is being cut short! to see your little girl in pain and very ill and you cant do much for her is very painful, i wish i could take her pain and recieve it in my own body so she can live her life like a little girl should, the doctors apt. didnt go as plan today new symptoms, new meds, so please just keep her in your heart and prayers, and we will never give up and stop fighting for her!! mommy and daddy love you destany with all of are hearts, and thanks everyone for your prayers!!

Friday, June 15, 2012

Destany


Meet Destany, my sister's granddaughter. My niece's daughter. Destany: turning 7 next month, a  spunky little girl who loves life.

Last week Destany started acting irritable and was having trouble with her balance. The doctor said she had an ear infection.

Yesterday, June 13th, she starting having seizures. She was rushed to Mankato hospital where the found a 2 inch tumor. She was moved to Minneapolis Children's hospital where she spent today having  an MRI done to determine exactly what is going on.

We are devastated by the news.

Destany has a Diffuse Intrinsic Pontine Glioma (DIPG) This is an inoperable tumor. Destany was sent home from the hospital. Next week she will return to begin a course of radiation which will buy her a few months where she will feel good. At that point the glioma will become very aggressive and take over her brain stem. The doctors are saying life expectancy beyond 12 months is very rare.

Obviously this was very rough news for her parents to hear. Our entire family is devastated. This isn't supposed to happen to children. Parents aren't supposed to watch their children go through such a diagnosis.

They're going to need a lot of support. Not only emotional, but financial as well. They are more than an hour away from either hospital where they can receive treatment. Gas for cars, meals while at the hospital, money to do some fun family things while they still can. Destany has four little brothers and right now, its all about creating memories for everyone as a family.

Gift or cash cards, or monetary donations can be sent to my sister at

To Destany
C/O Sandie Adams
2100 Blake Ave
Lester Prairie, MN 55354