Ashley's Story

She will leave fingerprints all over your heart

5/04/2007

This is what we pray...

that Ash's cancer has not spread. Through telephone conversations today this is what I have figured out. Everyone wants to know that the PTLD has not entered her CNS. Even though it is not likely it would spread while undergoing treatment for it, today they told me it is possible.

The surgeon is concerned with the massive amounts of sleep Ash seems to require. She is also concerned with the screaming between. Another red flag is the loss of skills and verbal ability Ash continues to have. She has never quite recovered from the hit she took after her cardiac arrest in January. We know that the first two tumors were found the week after Christmas and were assumed to be some type of a fungal mold infection in her lungs. We treated them as mold for six weeks before figuring out that they had spread and had begun to look suspiciously like cancer. In the mean time Ash suffered the cardiac arrest, CPR, and heart surgery(the draining of the fluid in the peri cardial sac and the placement of the peri cardial window). Ash had a lung biopsy, a bone marrow biopsy, and a spinal tap. The lung biopsy confirmed the diagnosis of PTLD(post transplant lymphatic disorder). The bone marrow biopsy told us that it had not spread into her bone marrow, but it also told us that it was not as weak as we had hoped(falling into the realm of something like monno). The spinal tap came back telling us that it had not spread into her brain and spinal fluid therefore we had a chance to get rid of it. If it had been inside of her CNS then we knew that the chemotherapy drugs would not be able to pass through the blood brain membrane and we would not be able to do anything for her. So as far as we were concerned she had cancer, but we were going to be able to squash it before it took our baby from us. We all agreed( the transplant team, the oncology team, and Dave and I) that we would begin chemotherapy immediately. Now that we are in our 4th cycle of 6 we are concerned about the possibility of it spreading to her brain. Thats what the return to Omaha will be about.

I realize this is a lot to take in and try to keep up with. I hope I am not causing confusion. My goal is to help everyone understand where we are and what we are hoping not to be battling. I know it is always helpful to know what to specifically pray for.

The return visit to Omaha will be decided upon next week depending on a hopeful appointment with a pediatric neurologist in Dallas. They have agreed to review Ashley's case on Wednesday and decide when and if they will take a look at her and give an opinion. If they do not take her as a patient then we will return to Omaha for tests and evaluation and develop a further plan.

When I think of the possibility of this cancer being inside my sweet Ashley Kate's brain it makes me tremble. I get scared and then I get angry. My gut tells me that it is not there and that all of Ash's bad days are related to her current course of chemo therapy. That is my gut. My head spins with an overload of information and possible explanations. My heart just hurts. It breaks and when I think it can't hurt any deeper I am proved wrong. My faith tells me that my God has a plan for my Ashley and even though I don't know what it is I can still trust Him with my sweet girl.

So how is she today? She is funny. She is silly. She is ornery. She is Ashley. She has stayed awake for longer periods of time. She has played with some rattles and small toys. She has repeatedly pushed her brothers elbow off of HER carseat causing us all to laugh. Several times throughout the drive she would burst out with a squeel to let us all know she was still the boss even though we had strapped her into that silly seat. She has no appetite and it seems as though she has forgotten how to eat. Her forgetting things like this is one more reason there is concern. One day she will clap and the next she will have forgotten how. Some days she can figure out her toys and then a while later she looks at them as if she has never seen them. The new skills she picks up don't seem to stick around for long and she struggles to remember the ones she has lost. I know I have said this before, there are good days and then there are bad days. At this point I just find myself praying for more good than bad.

This weekend I would like to forget about the bad and just concentrate on the good. We are all together. We have the opportunity to laugh together, to play together, to sing together(you know thats not pretty, but Ash likes it), to pray together, to enjoy our time together, to be a family of 5 together. My purpose this weekend is to take lots of pictures of my children playing together and loving life. I am busy storing up memories. Thank you for your prayers. I feel them surrounding us. Good night and may God bless you and your precious families. Trish

23 Comments:

At 9:24 PM , Anonymous Anonymous said...

Oh how this breaks my heart but I am encouraged at the same time. Thank you SOOOOOOOO much for taking the time to explain it to us. This helps so much to understand and to pray and to watch your posts for what is next. May God bless you all this weekend and please know you are so loved and prayed for. Sunshine

 
At 9:32 PM , Anonymous Lori said...

Thanks so much for the update. I hope you all have a wonderful weekend together.

Please know that we are praying for you all.

Blessings,
Lori

 
At 10:11 PM , Anonymous Anonymous said...

We are praying all the time for Ashley and it helps to understand what we are praying for. We are hoping for the best and we hope you enjoy your weekend with your family.

 
At 10:11 PM , Anonymous Anonymous said...

thank you for the explanations

know you are prayed over...

 
At 10:51 PM , Anonymous toni said...

Praying for Ashley and your entire family as you continue to walk this out together. You have genuine courage and it comes through loud and clear in your post.
Blessings,
~Toni~

 
At 11:49 PM , Blogger Joyful Days said...

Praying with you. Holding up sweet Ashley.

 
At 11:52 PM , Anonymous Marlain said...

Trish,
We've been following along, praising God for all the time He has given you to be a family together again.
Ashley's story is one of beating the odds. We pray that this is just another case of her proving everyone wrong. Chemo is tough for big, strong people - and hopefully the struggles she has are just because of how hard this fight is.
Praying for you!
Marlain, Jeff & Madison Jones

 
At 11:59 PM , Anonymous Nikki said...

This post broke my heart. I am in tears and they won't stop. But I KNOW God is in control of this and that He can be trusted. I hope you all are able to TRULY soak in every precious moment together this weekend. Please kiss Ashley for me - really.

 
At 6:40 AM , Anonymous Anonymous said...

Praying. Always.

 
At 7:25 AM , Blogger ManyBlessings said...

Praying for you all. Have a blessed week together.
dawnz

 
At 8:22 AM , Anonymous Regina D. said...

Trish & David - I am so sorry to hear the struggles that your family of 5 is facing. Please know that we continue to pray for you without fail. You have such a sweet family and you need some peace and happiness. Maybe this weekend of "just the family" will give you that and help wash away a tiny bit of your pain. We love you and will keep checking Ashley's story for more information. If you need me, I am a phone call away! Regina

 
At 8:58 AM , Blogger renovating this heart said...

Oh, frightening possibilities... your heart and your baby girl continue to be in my prayers and thoughts. I'm so sorry these new challenges have sprung up, as if she didn't already have enough to face. MUCH love to your WHOLE family.

 
At 9:50 AM , Anonymous oh amanda said...

Praying. Praying.

 
At 10:03 AM , Anonymous Suzanne said...

I haven't posted in awhile but did get to catch up today. Thanks for the update....& that helps me pray more specifically. Praying for each one of you along with Ash. In prayer....In Christ... Suzanne S.

 
At 1:22 PM , Blogger Karen said...

praying...

 
At 1:36 PM , Blogger Sarah's In the Midst of It said...

I am praying that this weekend is packed full of so many precious memories for your entire family!

And I'll be praying for her to receive some concrete answers, and for them to be GOOD.

Love y'all. :)

 
At 4:20 PM , Anonymous Anonymous said...

Dearest Trish. How we love you and pray for and continue to lift you and yours up to the throne of grace.
Judy

 
At 4:20 PM , Anonymous Anonymous said...

Dearest Trish. How we love you and pray for and continue to lift you and yours up to the throne of grace.
Judy

 
At 6:24 PM , Blogger Erna said...

Thanks for the update on what the doctors are concerned about. I hope that you are able to revel in every moment of this weekend, just soaking up all the time with your family.

Blessings and prayers . . .

Erna

 
At 6:37 PM , Anonymous Anonymous said...

praying for a very peaceful and happy weekend for your wonderful family. may God bring many blessings for Ashley in the coming weeks...

 
At 7:26 PM , Anonymous Anonymous said...

Praying for Ashley and for a wonderful weekend for your family! Chan

 
At 11:12 PM , Blogger cindy/barron said...

Hi Adams family, Trish i just read the journal, and want you to know our prayers are still with you all.,especially the Gherkin. Trish the bible says we can do all things through Christ who strenghtens us. Iknow God is working all Ashleys problems out. Trish you have such wonderful faith , i know its hard but keep it strong and i know you will you display it alot. Trish i have 3 kids of my own, divorced and there dad has nothing to do with them , sorry for sharing this but i have a point to make ,its been a hard 6 years but praise God for Ashleys story because my faith and my love for the Lord has grown tremendous , Thanks for sharing the GHERKINS story with us , because as i sit and write and cry i know the awesome God we serve is working miracles. Ihope this makes sence. Again we love the Adams family and thanks for letting us be apart of Ashleys life

 
At 2:56 PM , Blogger Emily said...

I'm staying hopeful with you. I remember Ashley acting EXACTLY the way you're describing in the PICU before they diagnosed the PTLD, and at that point it was not in her nervous system. Our little Ashley just does things we don't understand sometimes, I think that's part of her ornery-ness (if that's even a word). We all need to stay hopeful and keep praying, it's nothing short of a miracle that Ashley is where she is today. I love you guys and I hope to NOT see you soon. :)

 

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