Tuesday, January 1, 2013

Tuesday, January 1, 2013

First, as I said on Collin's facebook page last evening, I want to wish you all a Happy New Year, full of the things that are most important: FAMILY, TRUE FRIENDS, and GOOD HEALTH!!! It would also be wonderful if 2013 could bring much needed CURES for our kids!!!

Once again, I can't believe it's been nearly a month since my last update! Highlights of the last month include Collin's fourth birthday, visits and birthday wishes from our THON family, a visit with Santa, a great Christmas spent with family and friends, and a quiet New Year's Eve at home.

During our follow-up with Dr. Edmond three days after the eye surgery, she was very pleased with how much straighter Collin's right eye looked. His eyes have healed very nicely, and starting this month, we will resume patching to strengthen the weak right eye. When we see Dr. Edmond again in mid-March, she will see if the vision in the right eye has improved, and whether she needs to make any further adjustments. Our trip to and from Houston went smoothly; Collin has proven to be a pretty laid-back little traveler.

This was taken today-hair is growing in and eyes are looking straighter!
Collin turned four on December 18th. He was very excited to open cards and gifts, and for us to sing "Happy Birthday" to him! That week we had some visits from some of our THON kids as well, and were surprised when they stopped by to decorate our house for Christmas!

12-18-12...Opening birthday gifts
Surprise Christmas decorations...
...courtesy of our Altoona THON family

The weeks before Christmas brought some unexpected and incredible deliveries! If you follow Collin's facebook page, you know that we were searching for the Penn State Mr. Potato Head. Well, in an effort to locate one, a friend of ours contacted Hasbro, who referred her to Promotional Partners Worldwide. A wonderful gentleman at PPW Toys searched high and low, and found what is apparently the original prototype of the Penn State Mr. Potato Head. He sent this elusive Mr. Potato Head to Collin, along with a few other things he knew Collin would enjoy. Then, about a week or so later, a huge delivery came from Hasbro Toys, who had also become aware of Collin's love for Mr. Potato Head. They also included things for Neya for being such a great big sister! I cannot thank PPW Toys and Hasbro enough for their kindness and generosity!!!

Special delivery from PPW Toys
Plush MPH and Toy Story 3 Operation
Toy Story 3 MPH set
Some great MPH t-shirts
The Hasbro delivery was so big, Neya and Collin could fit in the box with room to spare!
Collin was very excited for Christmas, and had a chance to visit with Santa on December 16 when he came through our neighborhood with the West Hanover Fire Department. On Christmas Eve, he kept asking if he'd be able to see Santa when he came, and was pretty disappointed when I told him that Santa would only come if he was asleep, or he'd never get all of his deliveries made. Of course Collin had a lot of fun opening gifts on Christmas Day!

12-16-12...Neya & Santa
12-16-12...Collin & Santa
12-25-12...opening Christmas presents
This afternoon we had a visit from our friends the Guardian Knights, who delivered a few more Christmas gifts. They brought motorcycle vests to Collin and Neya, with their new "road names" on them. They also brought a one-of-a-kind Guardian Knight Mr. Potato head to add to Collin's collection!

"Tater Tot"
Guardian Knight Mr. Potato Head

Tonight Collin finished his second course of maintenance chemo; this course has gone as smoothly as the first with no nausea or drop in blood counts. Although his fatigue isn't as extreme as it was after the radiation, Collin still tires easily and needs to take rests throughout the day, especially from mid-morning/early afternoon on. He also asks to go to bed between 6:00-7:00 every evening. I mentioned this to his oncologist, and she had us come into clinic early yesterday morning to check his cortisol level with his bloodwork. As it turns out, his level was extremely low (normal is between 1.7 and 22.7; Collin's was below .2). I've done some online research, and it seems this could be a potentially life-threatening condition if it continued undetected. Thankfully we've caught it, and we may be consulting with an endocrinologist very soon to further investigate and treat the issue.

With the first full week of 2013 (starting Jan. 7), our schedule will go back to being extremely busy! For starters, Collin's therapies will begin again. It has been five months since Collin has had therapy, and I am eager for his therapists to see how much progress he's made since they saw him in July. He has a PT eval Monday morning, an OT eval Wednesday morning, and a ST eval Friday morning. On Thursday of that week (Jan. 10) he has his next MRI. Then the next day, after his speech therapy eval, we have an appointment with his oncologist and neurosurgeon to review the MRI results. It's hard to believe that scan time is upon us again already. Although I try to ignore the fear that is always lurking in my soul and not let it get the best of me, scan time tends to bring it to the surface where it threatens to take over, because I know all too well how things can change in a heartbeat. We'll either hear "all clear" and be handed another three months of "normal" life, or we'll get unwanted news that will push us back into the pit of despair where we will desperately claw our way out to the next treatment option to try, if there are any options left. Please, please let the MRI be clear!!!


  1. Praying for you that all will be well. Love you all. xoxo

  2. Thanks for the update! Love all the pictures, here and on FB.
    I'm so glad you caught that low cortisol! How scary!
    I hope 2013 is a better year!
    See you on FB.

    Ashton's grandma