With the Lord!

Little Andrew Smith went home to be with the Lord early this morning.  Please be in prayer for his parents, Shawn and Sandy, and siblings Steven and Charis Joy, extended family, church family and friends, as they grieve the loss of this wonderful little boy. 

Andrew Smith Update.

 Below you will find an update on Andrew Smith.  The news is not what we had hoped for and we ask that you keep Andrew and his parents Shawn and Sandy, and siblings Steven and Charis Joy in your prayers!

On Sunday, November 15th, we arrived at the National Institutes of Health where Andrew was happy to be back under the care of his beloved Dr. Warren.  When we met with Dr. Warren on the afternoon of Tuesday, November 17th, she told us that the scans confirmed what we had suspected—that the tumor had progressed.  In fact the entire brainstem and much of the cerebellum are tumor.  There is also involvement of the thalamus, the hypothalamus and the temporal lobe.  It was surprising to see the scans and know that Andrew was awake, interactive, and free of pain.  In spite of the scans, Andrew qualified for the temozolomide/ABT-888 study, and we signed the papers in preparation to begin the protocol.

Over the next couple days Andrew made it clear both to us and to Dr. Warren that he no longer wanted to participate in the study.  Knowing that it was amazing that he was awake, eating small amounts of a wide variety of foods, and enjoying teasing Dr. Warren about the Celtics, we felt that as parents we could ask no more of him.

For over 25 months Andrew has been living in spite of diffuse intrinsic pontine glioma.  God has been good to us along the way.  We have been overwhelmed by the outpouring of support from family, loved ones and strangers.  We have been blessed beyond measure with a caring medical team both at the NIH and in Lansing.

We are home at Sparrow and Andrew has been enjoying visits with some of the people he loves most in the world.  He has been spending time in the playroom, eating ice cream for breakfast, and enjoying the Christmas decorations that have magically appeared in his room.  (Thank you to the Michigan State Volleyball team and to the Michigan State Police!)

We have noticed subtle changes since the trip home on November 21st, but it has been clear to us since early Wednesday morning that Andrew is declining physically.  His time with us on earth may be measured in hours or days rather than in months or years.  We continue to rest in God’s loving care, to be thankful for the blessings in our lives, and to be grateful for the gift of Andrew. 

September is Childhood Cancer Awareness Month

Here is an article worth reading about the impact the Lord is allowing the Smith family to have.

Sometime it is clear!

Below is an update on Andrew Smith about how the Lord provided for a very definite need in a very definite way. I trust you all continue to pray for Andrew and his family and I thought you would rejoice in this blessing with them.

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In the middle of May, while considering the ramifications of switching Andrew's chemotherapy to every three weeks from every two weeks, I paid careful attention to a very special little girl in Utah. Sadie Huish was in the midst of a valiant battle with a diffuse intrinsic pontine glioma (DIPG). Her parents had recently made the decision to honor Sadie's request to postpone treatment and hospital visits indefinitely. I had been following the blog for a while, had grown fond of sweet Sadie, and checked regularly for updates. Though I had never met her parents Zack and Tiffany, I was heartbroken for them as Sadie began to deteriorate. She passed away peacefully at home on Thursday, June 25th.

Early this summer when we began talking about bringing Andrew home from the hospital, we began to explore the possibility of purchasing a wheelchair-accessible van. Without it we knew that we would be extremely limited in our ability to transport Andrew, making even a spontaneous trip to get an ice cream cone a very complicated matter.

It was about that time that we had the opportunity to meet Keith and Brooke Desserich from Ohio, along with their daughter Gracie. The Desserich's older daughter Elena died in August 2007, 256 days after she was diagnosed with a diffuse intrinsic pontine glioma. We became acquainted with Keith and Brooke through our connections within the DIPG community, and we became familiar with some of the details of Elena's story through the writings of her parents. Andrew enjoyed meeting Elena's companion dog Pablo, and he clung to the dollar given to him by Keith for days...even while he slept.

When the Desserichs became aware of our need for a wheelchair-accessible van, they set up the Andrew's Wheels Assistance Fund under The Cure Starts Now, a foundation dedicated to funding brain cancer research--a foundation born out of Elena's battle. As we searched for the perfect van, the Andrew's Wheels Assistance Fund accumulated cash. In the meantime we realized that we were looking at a $20,000-$30,000 purchase. By the middle of August I had decided that I really wanted to have the van by the end of the month. However, we also needed to order textbooks and DVDs for the new school year, and we had not even begun to think about how we were going to afford music lessons for Stephen and Charis Joy.

On the morning of Monday, August 24th, Make A Wish families in Utah received an e-mail letting them know about the sale of an orthopedic adjustable twin bed and a Chevrolet van with a wheelchair lift. A young mother in Utah thought of a little boy in Michigan who needed some wheels, and when I glanced at my e-mail that morning my eyes were drawn to one particular note.

Hi Sandy,
My name is Tiffany Huish, and we live in Utah. We belong to the dipg family, as our daughter Sadie passed away two months ago after a 16 month battle....

The note was signed with love, and the advertisement for the van was included. I responded fairly quickly.

Tiffany,
I know who you are. I have followed Sadie's journey and even shared parts of it with one of our oncologists....

By that evening I had spoken to Sam, the gentleman selling the van, several times. And Zack Huish, Sadie's dad, had stopped on his way home from work to take a look at it for us. During our conversations Sam also mentioned a motorized wheelchair. Zack checked it out carefully to see if he thought it would work for Andrew. We trusted his judgment without question...because we knew that, with very little explanation from us, he understood exactly what Andrew needed.

The van was advertised as a 2002 with 40,000 miles for $5,500. Sam's mom had recently died, so he and his sister were selling the van, several motorized wheelchairs, and some other things...simply because they were no longer needed.

At some point that day I made a phone call to Brooke in Ohio. I had a question for her, though I was fairly certain I already knew the answer. I wanted to know how much money was in the Andrew's Wheels Assistance Fund. It was $5,650. Within the next couple of days a check was sent to Utah, a title arrived in Michigan, and the Huish family picked up a white Chevy van...for a family they'd never met.

Sam and his sister were kind enough to throw in the wheelchair for Andrew at no charge, and I was intrigued when Zack commented in passing that it was burgundy and black. Burgundy? As in garnet? What more could a South Carolina Gamecock fan in Michigan ask for...than a garnet and black motorized wheelchair from someone he's never even met in Utah?

After finalizing the purchase of the van, the next step was to get it from Utah to Michigan. Zack was willing to drive it to us--that very weekend. But Keith Desserich thought he could arrange for transport through a friend. When both options were considered, all involved felt that it would be best to have the van transported to Michigan. The Desserichs set out to raise the remainder of the money needed for transport, and the van arrived in Michigan on Tuesday, September 8th.

Andrew was admitted to the hospital for chemotherapy Monday night, and I spent the night with him. He was delighted when Daddy picked us up Tuesday afternoon in the new van. The title had been sent with a card from Sam and Emily in Utah. They included $100 with instructions to take the family out once the van arrived. We drove straight to Olive Garden where the whole family ate an early supper with Sybil, one of Andrew's nurses, and Kurt and Brandon, two of Andrew's Spartan hockey guys. Between Sam & Emily's gift and Olive Garden's kindness to us, the bill was more than completely covered.

Over the past week, we have made up for lost time. We have enjoyed shopping at Toys R Us, eating at Bob Evans with our friends the Rardins who are missionaries to Mexico, and being present in the Michigan Senate to witness the resolution recognizing September as Childhood Cancer Awareness month. And the van means more to us than freedom to go.

When I climbed into my seat for the very first time on Tuesday, I noticed a marbled Team Sadie wristband hanging from the mirror--just as I had requested of Tiffany. This simple wristband is a reminder of a precious little girl in Utah who battled the same rare brain cancer that Andrew now battles, and a remembrance of the bond between two families who have never met.

Update 3 on Belen

With sighs of relief we rejoice with Belen and her family that her tumor is benign. I've been told that Belen may be transferred back to Colonia the end of this week. She is doing very well and still eating, drinking and talking. The only problem she has had is fluid build up in her head. I'm not sure if that is a result of the trauma of surgery and will resolve with time, or not.

Please continue to pray for the Mengens and for other families whose news is not so good. This week our friends, Shawn and Sandy Smith, received news that Andrew's tumor is enhancing. Meaning that it is either growing or necrossing, neither is good. They are 11 months into their new life in the brain tumor world. I know they have been a blessing to other families thrust into that horrible reality. And I know they would greatly appreciate your prayers.

Andrew Smith Update

I thought I would pass on this link of some nice pictures of Andrew Smith and his mom Sandy. Please be in prayer for Andrew as he is having some GI problems where he is unable to eat well or to keep the food down he has eaten. You can visit his CaringBridge web site for up to date information.

Andrew Smith's Prayer Card

A few months back I blogged about our friends son who was diagnosed with a Pontine Glioma brain stem tumor. This prayer card was designed by a friend of his. Please visit Help For Andrew Smith to download a prayer card for your prayer time. If you would like to keep updated of his, and his mothers condition - Sandy was diagnosed with breast cancer - please visit Andrews CaringBridge Website. I know they are thankful for your prayers!

Andrew Smith

I thought I would post a photo of the little boy we asked you to be in prayer for but I can't get it to work here. He began chemo last night and was to begin radiation today. You can keep up with him, and see photos, by visiting his CaringBridge site. I'm not sure if his Mom, Sandy, will be starting her own CaringBridge site but there have been brief updates on Andrew's journal for her. Please continue to pray for the entire family.