I want to start off with a few praises and things to be grateful for. Last week I asked for prayers on Jonathan's hearing test, and for no infections. This last week when Jonathan had his excessively low counts (Neutropenia), he did not develop any infections! I think having the Neulasta shot on time helped, so that is something we are very grateful for. We also had his hearing tests done again, and he did loose a small amount of hearing in the higher tones, but technically is still in the normal hearing range. Also good! We got to spend 5 days with my cousin Kelsey. This sweet girl is in college and wanted to get up here to help before school started. We are so grateful for our family and having so many people offer to help in so many ways. It was so nice to have her here and for the first time in a while I was actually able to get to the gym every day. Barre class and running a few miles every now and then really helps my stress level I think.
*I have to include this funny story about Jude and Kelsey, well just because if you know Jude this will make you giggle. The first day Kelsey was here, I had taken Jax to school and went to the gym. So Kelsey and Jude were getting acquainted. They were playing in Jude's room and Jude was putting Kelsey down for her nap. (Side note, Jude has a lock on his bedroom door turned around backwards so we can lock him in...safety reasons) Anyway, Jude left Kelsey in bed and when he left he locked the door. Kelsey quickly jumped up after hearing the lock and started yelling at him to unlock the door. He continued to tell her "you go night night, I go play!" Then eventually ran off giggling. Luckily Kelsey was able to pop the lock from the other side. I think Jude considers this his childcare initiation, and probably had this planned.
Typical protocol for Osteosarcoma is 2 rounds of their specific chemo regiment. These 2 rounds take 10 weeks to complete. After those 10 weeks are completed you remove the tumor or cancer source through surgery. Then you do another 3 or 4 rounds of that chemo regiment assuming the tumor was dying at the expected rate.
So when we got home and began attempting to schedule new MRIs, CTs, and PET scans, our oncologist here explained that we can not get another CT or PET scan yet. Apparently these types of scans are so high in radiation you can not repeat them any sooner than every 12 weeks. Right now, we are at week 8. SOOO... the medical oncologist called the surgical oncologist and decided that they wanted to wait for these scans to be done to proceed with surgery. So they are breaking standard protocol and doing another round and then will have scans done at week 12. Unlike many other types of cancer, this type of cancer can not be checked through his blood levels and can only be measured through a PET scan. How a PET scan works is that it measures the rate of absorption the tumor is taking in glucose. The higher the number the bigger and more active the tumor is. This type of tumor also may not shrink as it is dying, so an MRI isn't necessarily accurate to judge the death or the tumor because the size may not change. If it is growing however, and MRI will tell us the chemo isn't working!
Once again I had to speak up and let the doctors know that this makes me uncomfortable. I understand that we need the tumor to tell us if we are successfully killing all the other cancer cells floating around his body. That's why just removing it isn't a good idea. They have no other way to know if their chemo regiment is correct. HOWEVER if it isn't working I don't want to wait another month to know that it was actually growing. An MRI will tell us that much. So the oncologist agreed to order the MRI and said he agreed with my thought process. If it is bigger we will call the surgeon back and formulate a new plan. If it is smaller or the same size, we do as he recommends and do another 5 weeks of chemo.
I'm still a little confused as to how "standard protocol" for treating osteosarcoma doesn't meet the "standard requirements" of the PET scan? We can't possibly be the first patient to encounter this problem. Did someone miss ordering this test early on in the process? So next time I meet with Dr. Raj, we may have a longer discussion on this. But for now we get the MRI and see what it tell us. It is very hard to just not want to get this thing out of his leg! (Jon keeps asking me if I'll just take a meat cleaver to it) So Please pray that this thing isn't growing and maybe we get lucky and see that it is actually getting smaller through an MRI.
We are excited to continue a few more days where Jonathan is feeling good. The boys actually got him out in the hot tub this week, and he went and got 9 holes in at the golf coarse.
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