Saturday, January 12, 2013

Friday, January 11, 2013

Yesterday, we got to clinic bright and early for the fasting labwork ordered by the endocrinologist. Then we hung around until it was time for the MRI. First Collin asked me if we HAD to get his pictures taken (that's how I explain the MRI to him), and then he told me he didn't WANT to get his pictures taken. Then he kept making sure Bill and I would be there with him when he went to sleep and when he woke up. When it was finally time for anesthesia, Collin was calm and cooperative. In some ways it's easier now that he's older, because I can explain things to him in simple terms so he understands and knows what to expect. Of course he can also more easily tell me he doesn't want to do something, which is hard when there's not a choice.

The MRI went smoothly, and Collin came out of anesthesia fairly quickly and easily. While we were waiting for him to wake up, Dr. Comito came to tell us that although not all of the images were read yet (an MRI of the brain and spine is made up of literally hundreds of pictures, so it takes time to get them and read them), the images of his brain looked good. We breathed a HUGE sigh of relief! Ironically, while Collin was in MRI, we got a call from the endocrinologist saying all of his labwork came back normal, so he doesn't need to start on oral hydrocortisone yet! For now we'll just keep monitoring him.

This morning Collin had his speech therapy evaluation. Collin grew tired fairly quickly and needed encouragement to finish the hour-long session. His speech therapist could see some improvement, but there is still a lot to work on. She will see him once a week, and will initially see him for 45 minutes due to his fatigue.

After speech therapy, we went home for lunch, and Collin took a little nap. Then we went back to Hershey for his neuro-oncology clinic appointment. We met with two of the other oncologists and the neurosurgeon, who reviewed the MRI report with us. There is no evidence of active disease. The areas where the relapses were do not enhance (show up brightly), and there is decreased blood flow to those areas as well (tumors need a blood supply to grow). The neurosurgeon mentioned how Collin seems to have this "life force" in him because he keeps managing to "bounce back" from every setback he's ever had, and how the person least affected by everything he's been through is Collin himself. Tonight, I'm just so incredibly grateful...for another three months to live "normally" and watch Collin continue to move forward, for the amazing doctors, nurses, and therapists who take such wonderful care of him, and the constant love and support from our family, friends, and so many others around us. We are blessed.

Wednesday, January 9, 2013

Wednesday, January 9, 2013

Collin has had two of his three therapy evals so far this week. Monday we saw his physical therapist. She will see him once a week to work on strengthening and balance; some things we need to work on at home include having him stand and walk on his knees, and catch and kick a ball without losing his balance. Today we had occupational therapy. He will also be getting OT once a week, to also work on strengthening and coordination. We will see his speech therapist Friday. I've also been working on patching Collin's left eye, and got him up to an hour yesterday. Our goal is two hours a day.

Today we saw a pediatric endocrinologist due to the low Cortisol level found last week. Collin has hypopituitarism; basically the radiation has damaged his pituitary gland, which in turn is not controling the thyroid and adrenal glands properly. Cortisol is produced by the adrenal glands, and controls blood pressure and blood sugar, helps the immune system, and is released as part of the body's response to stress. When Collin has anesthesia tomorrow for his MRI, he will receive a "stress dose" of hydrocortisone to prevent an adrenal crisis, which can be life threatening. The endocrinologist ordered fasting bloodwork to be done early tomorrow morning before his MRI; she is checking his thyroid, cortisol levels, etc. She suspects the labwork to show he has hypothyroidism as well. If this is the case, he will need to take medication three times a day...for the rest of his life. A few years down the road, he will also need daily injections of growth hormone. None of this really comes as a surprise; I knew this was likely because of the radiation. I'm just a bit surprised that it has shown up so soon, but Collin's oncologist said this is not uncommon.

The morning after Christmas, Neya woke up at 2 am with severe ear pain, so the next day I took her to our pediatrician. As I suspected, she had an ear infection. While we were there, I mentioned that Neya has complained to me a few times about a rapid heartbeat and pain in her chest. So, the doctor ordered bloodwork and an EKG. Yesterday we met with the pediatrician to discuss the results. All of her bloodwork was fine. Her EKG showed a normal sinus rhythm, but also showed a "mild right ventricular conduction delay". Our pediatrician doesn't think it's anything serious, but since it's not something he would have expected, he has referred Neya to a pediatric cardiologist for a cardiac workup. Her appointment will be next Tuesday.

Tomorrow will be a long, stressful day. We'll be at clinic at 8 am for labwork, and the MRI is scheduled for 11. Hopefully we will be able to get a preliminary read tomorrow. My anxiety over scan results has reached a new level now that Collin has had radiation. Before, I always knew that we still had radiation to try, which was some reassurance. It was his best chance at a "cure". Now that we've done radiation, I know there is not a lot left to try if he relapses again. It's a terrifying thought. There is nothing in the world I want more than to see my sweet boy grow up.

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!!!