Sunday, January 25, 2015
My friend, Melanie, and I have been friends for years. We’ve shared so much life together. Much of it has been while we’ve run miles and miles and miles on the trails. Training for races, running for “fun,” running to show others new trails, running for therapy. The first time I ran after my father died, I couldn’t stop the tears. She promptly burst into tears with me. We stood on the trail, hugging, and crying. She taught me compassion, friendship and how to dig deep, that when I was tired, I always had two more miles in me.
I think I can speak for my family when I say we’re tired. This cancer journey has been a marathon for sure. We’ve once again learned the lesson that we always have two more miles in us!
The last two miles of a race can be some of the most exhausting miles you will ever run. You can see the finish line, you can hear the crowds, you can feel the victory that is almost yours, but you still have to put one foot in front of the other to get there. Some people are full of adrenaline and pick up the pace. Others collapse as they cross the finish line. It wasn’t easy. At times, it wasn’t even fun. Some you know gave up a long time ago. Still others barely break a sweat and make it look so easy. Either way, you’ve done it. You’ve accomplished a goal.
What has all this to do with Christopher, you ask? Folks….we have TWO MORE MILES to the finish line!!!!! Two more clinic visits. TWO!!! The finish line is in sight!!!
I think this is one of those uphill finishes. Slow and steady, in pain, but determined and excited.
Christopher has been having knee pain since the beginning of the semester. A phone call to his oncologist was in order. Dr. Kothari said “Is the pain enough to keep you from going for a run right now?” When Christopher said yes, it was decided that an x-ray be done as soon as he got home for Thanksgiving.
The day after Thanksgiving, Scott and Christopher made the trip to Children’s Hospital to have the ordered x-rays.
Tuesday morning after Thanksgiving, Dr. Kothari called me to say he was going to order an MRI as soon as Christopher was back from finals. He’d seen the x-rays and needed more images to confirm what damage had been done. Christopher was told to take it easy until he got home. We were concerned at the speed this was going. Pleased that time wasn’t being wasted, but we were wondering how serious this was.
Monday, December 15 Christopher and I were off for his MRI. I’d like it officially noted, that we were not only ON time for this visit, but we were EARLY. EARLY I tell ya!!!! Didn’t make much difference, just gave us even more time to enjoy the waiting room as they were running behind. I hadn’t filled out the parents form to enter the scan room while Christopher had his MRI, and because Christopher is really okay by himself, I stayed in the waiting room. The MRI took a little over an hour.
We had time for lunch before the scheduled appointment with Dr. Kothari. Once again we were greeted with “What took you so long, I’ve been waiting for you!!” It’s like a play date. If you’ve met Alok, you’d understand.
We spend quite a bit of time visiting, telling stories, laughing, and catching up during each visit. It’s this personal touch, the relationship that has formed over these last few years that make this journey bearable.
The nurses decided that between Christopher and the good doctor, Alok’s beard, though gross, wins the beard contest. He grows the beard to shave it for St. Baldricks, but he also takes pleasure in torturing the nurses who don’t like it. I won’t lie, this makes me laugh.
Shameless plug here: As I mentioned, Dr Kothari is once again participating in the St Baldricks fundraiser. The St. Baldrick’s Foundation is a volunteer-driven charity committed to funding the most promising research to find cures for childhood cancers and give survivors long, healthy lives. Please consider making a donation as a thank you for all Dr. K has done for Christopher, our family (I may or may not have texted him from the beach in Florida regarding a cut on Rory’s hand), as well as his other patients and cancer research. He’s the real deal!!
Don’t ask about the picture, I don’t know.
Now the bets are on as to which guy will get married first. The nurses are putting their money on Christopher.
When we finally got down to business, Dr. Kothari looked at Christopher and said “Dude, your knees are all kind of messed up.” (The medical term for that would be “Avascular Necrosis.”)
What is Avascular Necrosis? Good question.
According to WebMD: Avascular necrosis is bone death that occurs when the blood supply to the bones is decreased or stopped. Without an adequate blood supply, the bone breaks down and dies and collapses. If the bone affected is near a joint, the joint may also collapse. Although any bone can be affected, avascular necrosis most often affects ends of the long bones, such as the upper leg bone at the hip.
Symptoms include mild to moderate hip or groin pain, decreased hip movement, and a limp. Pain may be sudden and become worse with standing or walking. Rest usually relieves the pain.
Long term steroid use is the culprit here. Steroids can slow or stop the flow of blood to the bones. Two years of steroids have led us to this point.
What does this mean for Christopher? It meant a visit with an orthopedic surgeon. This boy knows how to party over his school breaks.
All the x-rays and scans were sent to a highly recommended Orthopedic Surgeon, Dr. Denis Nam. We were very impressed. He walked into the room and introduced himself humbly, saying “Hi, I’m Denis.” He had Christopher walk so he could see his stride. Dr. Nam manipulated his knees and legs to check for knee and hip placement, as well as pain. He pulled up the x-ray and MRI results to show us what we already suspected.
(These are not Christopher’s knees, just in case the knee models recognize themselves and want credit.)
This knee on the left is a healthy knee. The white arrow is pointing to cartilage.
The knee on the right is showing some avascular necrosis, the dark spot, being pointed out by the black arrows.
Taking into account that Christopher’s knees are “all kinds of messed up” you have to picture a much bigger area in his knee joints. There is considerable damage.
One good thing we discovered is that according to Dr. Nam, Christopher’s knee cartilage is pristine! I’m pretty sure this will impress the ladies.
We went to this doctor visit expecting to be set up with some physical therapy. None was prescribed. We’re not exactly sure why, but it could be that he wouldn’t benefit from increased activity. Christopher has been told no running and no high impact activities (hmmm, snowboarding? Jumping for volleyball??). Swimming, cycling, all those kinds of activities are encouraged. (Cycling? If only we knew someone who could help with that!) If the pain in his knees gets to be too much, he is to use crutches until the pain subsides and avoid all weight bearing activities.
Unfortunately, not much is known about this disease. There are no promises that it will get worse, but no guarantees that it will get better. We were told that how the boys’ knees are in a year, will probably be how they will be the rest of his life. We are not putting God in a box here. He is able to do immeasurably more than we can imagine!
At this point, Christopher uses a knee brace daily. He describes his knees as feeling weak, or like they could give out doing certain activities. Some days, just walking through a store he is aware of his discomfort level. Walking around campus and certainly after volleyball practice, he is hurting. Some days, he’s not aware of the pain. He is allowed to use Tylenol for pain, so long as he doesn’t have a fever. He can also take oxycodone if needed but that tends to make him sleepy and feel slightly out of it. Not ideal while trying to get through a day of classes.
We left the visit with instructions to return in six months for scans, to check the progression of the disease. Also, if he feels any changes or the pain is unbearable, he is to see Dr. Nam immediately. “Live your life,” were the words with which Dr. Nam encouraged Christopher. A long way down the road, Christopher may be a good candidate for total joint replacement surgery.
We naively didn’t expect to see any long term effects from chemo until much later. To hear you have permanent knee damage at such a young age is quite a blow.
A few things you’ve learned about Christopher through sharing this journey with us, he is determined, he has perseverance, he has a strong faith, and he will come out on top. This is just one more curve ball that we turn over to God. But we’re tired. And a little mad. I know I’ve had to say to God “REALLY?????”
As we’re in these last two miles of this race, we are checking off all the lasts! The last LP!!! The last clinic visit in Asheville, NC. The last of steroids!!
The finish line is in sight. Thank you for being with us through this long, long race. Please continue to pray. This is hard. It’s easy to lose sight of whom we should make our focus when we busy ourselves with worry over money, bills, and financial aid. These things are important for sure, but we must continue to put God first. He must be what we strive towards first. Every single step, every mile we run. He was with us at the start line, ran, walked, crawled next to us each step, and He will be cheering the loudest when Christopher rings that bell!
Christopher was once again given a gift to help cover tuition for this semester. We had prayed and prayed, trusting God to provide. We were prepared though, for him to come home if need be.
There are so many times I’ve questioned God’s “No” answers. I know deep in my heart, that God’s ways are perfect. I trust Him. When this tuition gift appeared, I found myself, for the very first time, questioning God’s “Yes.” Maybe I don’t truly trust God enough to provide?? Humbling!
To receive a gift you can never repay, that is given totally out of love, to further God’s kingdom through Christopher?? How do you grasp that? How can we fully understand how much God loves us? Didn’t Jesus die for us, to give us a gift we haven’t earned, that we can never repay, just because He loves us??
A friend helped me see it by saying it like this “God is more in love with you than you will ever understand. He needs your son to glorify Him, so He’s making it happen.”
That has been our prayer from the very beginning. God, be glorified through Christopher.
Run your race to victory, Christopher!!! Only two miles to go!!!