It’s been a trying week. I know I’ve said this so many times, but it just continues to prove true. Each conversation with one of Mason’s doctors is somehow worse than the one before.
In the past 6 days, I’ve easily had over a dozen phone conversations with doctors and nurses not to mention the very long day spent in the PACU on Monday. It’s overwhelming and exhausting and literally every time we think we have things somewhat figured out, the next phone calls changes everything.
Monday’s arteriogram went well as far as we know. This was done in preparation for resection surgery on the tibia which will be at least 12 weeks down the road. This is the surgery where they will have to take one of Mason’s fibulas and fold it in half to create a new tibia to replace the 10-12 cm section they will remove. Unless there is something unusual about the vascular structure of his legs, we don’t expect to hear any results of this test until surgery planning time.
The battle we’ve faced the last few days has been an unexpected, completely unnecessary one. We have found ourselves in the middle of two very skilled doctors who can’t agree on Mason’s treatment and haven’t even attempted to present a united front for us. Given the fact that we’ve found ourselves so consumed with sadness and worry, it’s become difficult to make easy, everyday decisions, much less major medical decisions. It is really difficult to put your trust in medical professionals who can’t agree. We began to question everything this week and started seeking all options. Today, after the momma bear in me came out, Matt and I finally feel like Mason is again the priority and his doctors are coming together in his best interest. There is one thing I know for sure in all of this – I do not want to look back on this time and regret not advocating well for my son. But, I want to do so with kindness and grace. I don’t want to forget that we are not the only family dealing with this horrible disease even though at times I feel like we have to be.
Here’s what I have learned since I last wrote. And, I’m warning you, there is a good chance that before this post goes live, I will have had another medical conversation and half of what I’m about to type will be incorrect.
– There are actually 4 tumors total. 3 of them are in the top of the femur (golf ball, marble, and BB sized.) One is the original tumor in the tibia.
– The tumor in his tibia is the low grade intramedullary one that is so completely rare. The 3 in his femur are actually in the cortex (hard part) of the bone and appear to high grade typical osteosarcomas that are now metastasizing.
– It is likely that the cancer will metastasize to his lungs within 6 months if chemo is not started. However, there is this rare (let me count the ways this word rare has proven to be true) chance that these 3 areas are not metastasizing tumors, but instead a bone infection. This is the one time we actually want the rare option.
– Chemotherapy will be a full year of treatments.
– Our biggest fight during chemo will be keeping Mason in a healthy environment as his immune system will be weakened so drastically. This will mean extreme precautions to avoid complications.
1. CT guided needle biopsy of largest tumor in femur. 10 samples will be taken and Mason will be in some pain, but very little compared to his last biopsy.
2. If the area does NOT appear to be an infection, a double lumen Hickman catheter will be placed under his clavicle to begin chemotherapy.
1. Baseline hearing test because chemo can decrease hearing.
2. Echocardiogram because chemo can damage the heart.
Next week at some point – Chemotherapy will begin.
12 weeks after chemo starts – He should be ready for resection surgery/surgeries.
We are so grateful for your prayers and unending support.