Where to begin

Hi everyone,

Where to begin? First I’d like to explain why we went to MN. without a confirmed appointment with the doctors there. If there was ever a time that I felt close to a “breakdown” that week was it. Between waiting for the phone to ring and the boys being overly anxious to go on the airplane…I thought I was going to loose it.

For us, that one phone call meant a chain of events taking place; a phone call to Biomarin, to St. Joes, to the geneticist, to the airline, to the rental car, to the hotel, to Mike’s work, to my family in MN, our friend watching the dog’s, to Trey’s preschool, the boys football coach, etc. What had happened is that every day I waited for the call and played telephone tag with the doctors scheduler in MN, the airline seat availability became more and more full – being a flight attendant, of course we were going “stand by”…is there another option? I got so worried that we were going to miss the appointment due to the fact that we wouldn’t be able to make it on a flight that I had decided (with the help of my mom) that we were going to purchase the tickets for the five of us and sit in the hotel room to await the phone call. At least this way the boys would be happy to be on their way and we would be 1,700 miles closer to Dr. Whitley when the call came.

Well as we all now know, the call never came…but everything happens for a reason. Mike and I haven’t felt that “normal” as a family since Trey’s diagnosis. We drove up to my Grandma’s home at the lake and spent the week there as carefree as we could be…all circumstances aside. Also, for the first time since Trey started his infusion, I didn’t worry that he was missing one (heck, it wasn’t working anyway). I truly felt like I had been given a mental break from the stress and worries of “life” while we were at the lake. The boys had the time of their life…give any boy a lake, a fishing pole and acres upon acres of woods to explore and you’ve got a recipe for “fun”! Yes, Mike included! Are you kidding, he probably had the best time (and so badly needed it)! We all got to spend precious moments with my 88 year old Grandmother who just two weeks earlier was checked into a hospital where my mom and aunt weren’t sure she would ever come home from. So you see…everything happens for a reason. God knew exactly what he was doing when he sent us to MN…we just didn’t know the reason until after we experienced it.

As a side note, the staff in MN knew I worked with the airlines and didn’t realize that I had bought tickets for the family and truly felt bad that we had spent the money. The doctor even offered to write a note to the airline explaining Trey’s spine condition if we wanted to turn around and come home. Also, if this wasn’t final confirmation that buying tickets was actually a “good thing”, my mom was trying to fly standby out on the same flight home as us but all of the airlines were completely booked full, causing her to spend 2 ½ days in Minneapolis before buying a one way ticket home to Phoenix! We never would have gotten home; trying to fly standby with a family of five…again, everything happens for a reason. As stressful as it was, and a close to a brain aneurism as I thought I was before we left, all that seemed to mean nothing as soon as I saw the smiles on Drake, Broc and Trey’s face when we told them to pack their bags…God’s plan was perfect


Less than a month later and we are headed back, only this time with a week’s full of appointments and hopefully answers that await us. We will leave Sunday, November 16th and return Sunday, November 23rd. This is what we have scheduled thus far per Dr. Whitley;

We are working on the final schedule for Trey's visit the week of November 17th. This is a partial and approximate itinerary. A more specific and detailed schedule will be sent in a few days as the appointment times and other consultations are finalized.

Monday, Nov. 17:

Morning: Neuropsych Assessment (Dr. Zeigler)

Afternoon: Cardiology (Dr. Braunlin)

Genetics (Dr. Whitley; either 1:00 or 2:30 PM)

Tuesday, Nov. 18:

TBA – possible infusion

Wednesday, Nov. 19

Sedation/Anesthesia: Needle biopsy of the liver. (This is a thee key test.)

MRI (head) and volumetrics (liver, spleen)

Thursday, Nov. 20
Spine Orthopedics (1:00 PM, Dr. James Schwender)



As you can imagine we are excited to get some answers yet at the same time so afraid what they will be. I have had so many sleepless nights since all of this began that to finally know from the “best of the best” what we are dealing with is what is needed to go forward. I thought when all this began that I would need some sort of anti depressants but I am proud to say that after a few ½ tablets of sleeping pills following those first heart wrenching nights, I have only needed my family, friends and most importantly my faith in God to get me through. I am trying to “Let Go, Let God” to trust that he will direct our path

Thank you to our family and friends who go through these trials with us and feel the hurt just as deep and we do. For those who try to understand our worries and pain, thank you! The sadness and unknown could take over our every thought if we let it. I have tried to live for today as the joy of the blessing given to us are right in front of our face Drake, Broc, Trey… and to miss the happy times would be missing out on so many wonderful memories that the boys are making and that Mike and I are the blessed recipients of. Yes, we are sad, worried, scared, stressed and yet we are also hopeful, faithful and BELIEVE that we are in good hands.



Love beyond measure,

The Lanes~



When the frosts are in the valley,

And the mountaintops are gray,

And the choicest blooms are blighted,

And the blossoms die away,

A loving Father whispers,

“This all comes from my hand”;

Blessed are you if you trust

When you cannot understand.


p.s. the attached pictures are from 1)Halloween 2)”Takedown” fundraiser – Trey is being held by “Wolf” from the American Gladiators 3-5)MN. 6) Trey’s other Halloween costume this year, he wore two…because he can