So results day came. After no sleep last night and having not eaten for 3 days, it was stressful to say the least. We waited an hour and a half then were finally called back. Dr. Murali came in and told us first that our chest scan was clear. First victory. Apparently Rhabdomyosarcoma is known to spread to the lungs. Second, the bone scan was clear, Second Victory. He said Clayton’s kidney has a problem that is common in kids and has nothing to do with the cancer. Ok.. we’ll take that. Then he said that there is a tumor in Clayton’s middle ear. So, we’re thrilled that the rest of his body is clear, but he still has cancer that we have to get rid of. It’s not large, but it does intertwine with some important things. As crazy as it sounds, we’re relieved to have a tumor. Sounds weird, but when you understand all the other things that could have been, it’s take a deep breath time.
Dr. Murali ordered a bone marrow test and a spinal tap, although he feels confident it will be clean. He says where a child is concerned and with the location of the tumor, he’d rather check to be sure instead of guess. So, please keep that prayer request. We are praying these scans are clean as well.
We met later with an ENT at Tx Childrens who will be working with Dr. Murali. She was focused on the tumor itself and where it is located. This appointment was a bit of a downer because it just reminded us that we’re still in the fight. We still have evidence of disease and we still need prayer for it to go away. She was very interested in seeing Clayton and looking at him because this is such a rare thing. She explained that the location of the tumor makes it inoperable. This is because it is intertwined with “high dollar real estate”. Balance function, hearing, facial nerves, etc. So, our option is radiation and chemotherapy. Both doctors are confident that Rhabdomyosarcoma reacts well to radiation therapy and combined with chemotherapy, this should be curable. There’s never 100% promise, but it’s likely to work. But, are any of us promised tomorrow… really? We are trusting God’s hand on Clayton and continuing to pray him to full health.
As far as how Clayton is doing. He did NOT like the Bone marrow and spinal tap today. We had a time waking him up after the procedure. He’s tired of white coats and pokey things. He misses his siblings. We explained to him that we are happy because he only has an ear that’s sick, and nothing else. We tell him that God still needs to heal his ear. He has no concept of the fight ahead of him, but he can do it. Clayton WILL Win!!
We expect a call from Dr. Murali either tonight or Monday telling us the results of the tests today and when to come back for our “roadmap”. I’m dreading it for my little guy, but know it’s a have to. But, for this weekend he's going to play basketball and maybe even go to school on Monday. He has many hard days to come and we want him to play as normal as much as he can. We will update everyone on the next steps.
While we were in PACU, the center which does the bone marrow, we saw so many hurting kids. It’s our desire that you all would pray for them too. We met a sweet Christian family whose 12 year old daughter, Caroline, has been fighting leukemia for 2.5 years. This hit home to me because of my 12 yr old Caroline. Just makes me want to tell my kids to not take life for granted. Be grateful for health. How precious it is.
1- Good lab results from today.
2- Strength for Clayton as he begins the fight toward total healing.
3- Our new friend, Caroline.
4- Strength for mom and dad to support our baby… I’ve never cried so much in my LIFE!
5- Our other kids as we help them understand.
We can not thank you enough for loving us. We could not do this without each of you who truly shows the love of Christ to us. We believe your prayers held us up this week, and will continue to do so.