Nicholas D. - Quilt Finished in 2002

Born: March 21, 1994

Illness: Cerebellar Medulloblastoma

A Thank-You From Nicholas D.'s Family!

I wanted to let you all know that we recieved Nicks Love Quilt.  You should have seen Nicks face when he went to the post office and found the card there.  When they brought out the big box his eyes got really big!  He really loves the quilt, it is on his bed and covers him up each night.  He was really excitied by all the cool squares from quilters all over the world!  He says to tell you all thank you very much ~big hugs~ and it is really cool!!!  You all have sent him so much love in this quilt, and I cover him up with it each night!  I wish I could send you all as much as you have sent Nick and us his parents - such a priceless gift!

Thank you all for being such a blessing to us!

God BLess ~ Pam, Bob and Nick

Nicholas's Story

written by mom Pam

Nicholas was a "strong willed child" right from the start. At the time of his delivery, he was so stubborn about making his grand entrance, that my doctor had to ask my husband to help me push! That was the first of many times to come where we had a clash of wills with Nick! Don't get me wrong, Nick is a really good kid, but I've never met a more stubborn one! But we believe Nick's strong will was definitely a gift from God, to enable him to deal with what was to come almost 7 years later in his life.

Nick was a healthy child except for chronic ear infections until early 2001. The last week of February, I got a call from the school to pick up Nick because he had vomited in the classroom. We figured it was just the flu since it was going around at his school. The funny thing was, he seemed fine when I picked him up. No fever, no stomach ache.... This happened again a week later, and by the next week, the frequency of vomiting was slowly increasing. We took him to the doctor and the dentist. They found that he had a abscess tooth, and a sinus infection. So we treated him for those, but that didn't seem to help the vomiting. It was getting more and more frequent. Our family doctor was puzzled and was going to start ordering some tests the following week if things didn't improve. Then on March 17th,2001, Nick and his friend were playing outside and decided to try and jump steps with their skateboards. They weren't wearing their helmets and Nick fell and got a goose egg sized bump on his forehead. He seemed to be okay though, with no signs of concussion. But when Nick woke up the next morning, he started the vomiting again. We brought him to the hospital, thinking that maybe he did have a concussion, after all. But after a CAT scan was done, we were stunned to find out he had a brain tumor the size of a golf ball, and was to be admitted and scheduled for surgery right away.

Nick was diagnosed with Cerebellar Medulloblastoma, a fast growing tumor that frequently spreads to the spine. We believe it was by God's grace that Nick had that skateboard accident that lead us to discover the tumor before it had a chance to spread. God was also with Nick through his surgery where over 99% of his tumor was able to be removed. He came out of the surgery wonderfully, with only double vision as a side effect from the pressure in his head on the optic nerves, and a loss of balance. Then again, a couple days later, God was with him also, when Nick had a mild stoke that effected his left side. It left his left arm and hand with no movement, and his left leg and foot with very minimal movement. We know it could have been much worse. A mild stroke and brain surgery is enough to keep a good man down ---- but not Nick!! That strong will of his prevailed, and he wasn't going to let anything keep him down!

Nick was in DeVos Children's Hospital a total of about 2 weeks. Then he was transferred to Mary Free Bed Rehabilitation Hospital where he stayed for 4 weeks. He arrived there in a wheelchair, but left walking with a cane and able to play video games again! That strong will worked wonders for him! That and the power of prayer! Nick continued to work very hard at Mary Free Bed with outpatient therapy 3 mornings a week. And when he was finally discharged summer of 03 - He not only didn't need a cane, he was running, jumping, climbing and skipping again!! You can't even notice a limp!! Not all of his balance, endurance, and strength has returned totally yet, his left hand still shakes a little. But he's working at it. Now he is back on his roller blades again! Not jumping ramps yet, but, he's working on it with all the determination of a champion!! We are not sure how much more of his balance will return, but we're praying for a full recovery. Nick's double vision is gone and he no longer needs glasses at all! The only lasting vision impairment is Nystagmus when he gazes up and out.

Nick has been considered in remission since his his last chemo dose. The cancer has a 12% chance of returning, and they say if it does come back, it usually does within the first two years after completing chemotherapy. We passed that 2 year mark in the fall of 2004, and this fall (07) will mark 5 years of remission! Woo Hoo! There is a BIG party planned to celebrate that =)

Nick completed all of his radiation treatments (30) in 2001. And then on July 23, 2002 he was given his last dose of chemo. The long term side effects he has developed is a hearing loss in the higher tones which he now has hearing aids for, and slow thought processing skills. He has been placed in smaller classes with teacher aids at school and has some extra accommodations to help with his slow processing skills. Nick works very hard at school though and is making mostly B's! The slow processing skills were effecting his social skills and giving him a coping anxiety. So, he has been taking the drug Zoloft since the summer of 2004 and it has done wonders for him! He has come back out of that shell and is again the "wild and crazy" Nick we used to know!

It was truly a very ruff but miraculous recovery. And Nick, I'm sure, will continue to amaze us with his sunny disposition, bright outlook, and "nothing can keep me down" attitude. We have learned so much already, but the most important thing is that if you put your faith and trust in God, He will come through for you in countless ways. Even though you may be going through the hardest time of your life, He will rain blessing upon blessing on you and give you the strength to make it through in ways you've never even imagined. Our family is so much closer now, we have shifted our priorities and now count each day as a gift, and strive to make the most of it. We laugh and joke and spend so much more quality time together than before. And God has put so many people in our path who have helped us in so many ways. And he continues to do so! And also I'd like to think we have helped others too along the way. No child should ever have to go through something like this, but many do, and by God's grace, are better people for it. My son Nicholas will be too, as well as all of us who's lives he has touched!