We moved to a little slice of heaven here on earth. We have been absolutely loving living on the lake; it has been so good for all of us to have this peaceful sanctuary as our home. We still can't believe we live here!
Noah and I went to Vancouver in July for treatments and also for an MRI of his knees, because we were concerned about the pain he was having while playing soccer. At our appointment, he was laying inside the machine, wearing the coolest goggles ever ( they played a movie that he could watch while in the MRI! ) while I sat outside of the red line lest my earrings etc, come flying out of my ears toward the massive magnet in the machine. I saw the tech sitting behind her computer click, click, clicking away at the pictures, then something else caught my attention and I looked away. Suddenly out of the corner of my eye, I could see a lot of activity in the little room- there were now three people in there, one person on the computer, one on the phone, one at another computer calling up some x rays that I could see were legs. Then she got a sheaf of papers and two of them looked at the papers and then at the xray then at the MRI screen and they were pointing at the screen and then at the xray, etc. They were looking worried and scurrying around in the room. I started to get a little worried, and then the first tech came out and said that the doctor had ordered x rays. Now I was really worried.
Noah asked, "Didn't I already have xrays?"
She looked startled. "You did? When?"
I said, "In May."
She leaned in. "Did they do both legs, or just one? Did they do the right leg? Did they do the whole leg or did they do Femur, Knee, Tibia and Fibula?"
Now I am starting to freak out. I casually say to Noah, "Hmmm.... I wonder what's going on?" He just shrugs, and goes to get dressed.
In the Xray dept, it just gets worse. They do front, back and side of his hip joint, his femur, his knee, tibia, fibula and ankle of both legs. It takes forever, and the whole time the two x ray techs are whispering and pointing and comparing, etc.
Now I am in full freak out. My heart is pounding, my legs are shaking - what could everyone be so worried about? Of course they are all "just" techs; they can't tell me anything, only a Dr. can tell me anything.... I just sat there and prayed and prayed until I felt calm(er).
I poked my head out of my little cubicle and asked, "Ummm, am I going to get to talk to someone about this? 'Cause I don't want to go home feeling the way I'm feeling right now." Then, to make matters worse, she comes over and puts her hand on my shoulder. " I can totally understand that. I'll see if I can find a Doctor." She was being so intentionally kind and sympathetic, that pushed me right off the edge.
The problem is, it is 5:45 on Friday afternoon. Everyone has gone home. Thankfully there was one Radiologist who was still in a procedure, so when he was finished, he would look at the X rays, and talk to me about them.
We had to wait until almost 7, but he did come and bring us back to the dark room where they look at the x rays on screens. It was a really cool place. He had been looking at Noah's x rays already, and he showed Noah all of his bones and joints, and in reply to my questions, said, "Well, nothing jumps out at me right now, but I will take a closer look at his previous x ray and compare them. If I find anything, I will let the oncologist on call know, and he or she will relay the message." That totally made me feel better.
We didn't hear anything that weekend and actually, not until the next Thursday, when our nurse called to say that they had noticed "bony changes" She hadn't seen any pictures or anything and our doctor was away, but when we came back in August, we would get to talk to someone about it.
I was confused because the radiologist said he would check the x rays, and he didn`t see anything. But that is because it doesn't really show up on x rays. This is what his MRI looks like.
We now know why the MRI techs were so worried. The big spot on the right tibia is avascular necrosis, or dead bone. The other tibia is not as bad, but the femurs are both just as bad as the tibia in the photo. (I only took a picture of this one; our doc said he would email the rest to us, so I stopped taking photos, but I don`t have them yet, so I only have this one)
The good thing is that it is all in his bones, and not in his joints. If it was in his knee joints, we would be looking at bone graft surgery or possible knee replacements, so we are very thankful it is in his bones, because in bones, it acts more like a broken bone that can regenerate.
The bad thing is that as you can see in the picture, the damage is extremely close to the growth plate (the arrow is pointing to the black line that is the growth plate). If the growth plate is damaged, his right leg may not grow as quickly or as long as the left leg. If that happens, they can fix it, but it is quite invasive and involves a leg-stretching brace that is screwed into his femur and tibia, so we would like to avoid that, if we can.
It will take a while for the bone to fully regenerate, so for the next few months he has to take it easy, and not do any high impact stuff. He will be lucky - he can play volleyball as long as he doesn`t jump too much, but he isn`t allowed to run lines. Hopefully by the time basketball season starts he will be able to play. Our Doctor wasn`t really keen on it, but we`ll see. Thankfully the things he can do and that are really good for him to do, like swimming, he can do daily, now that we live on the lake. Skating is also good, so he will be able to play hockey and skate on the lake when it freezes this winter.
He no longer has pain when he runs a bit, and the doctors have stopped the Prednisone, the drug that causes Avascular necrosis, so it shouldn`t get any worse. I don`t know what the long term implications of stopping the Prednisone are, but maybe after the MRI in the fall shows a fully healed bone, they will re start it.
Apparently they are realizing that Avascular necrosis is a wide-spread problem in kids with ALL, and the Child Oncology Group is trying to come up with a policy and a strategy to deal with it. Dr Lucy said that if they did MRIs on all the kids, a lot of them would have it.
So we are asking you to please join us in prayer and our prayer request is that his bones would heal up quickly and that there would be no damage to the growth plate on his tibia. Thanks so much for reading and for your support - we really appreciate it!
