Hello! So yesterday our social worker, Jodi, that works with our oncologist called me. She called to let me know that Dr. Shores policy is to wait until our appointment and discuss MRI results. This has been his policy for years. I guess since our RN is new, maybe she didnt know that. I let our social worker know that I was totally fine with waiting if thats Dr. Shores policy, but that I was frustrated because Paige kept telling me she was gonna have results everyday-then not giving me any. I am so glad all that was solved. I was really upset at the whole situation. Ugh it drives me crazy when communication gets messed up. Im just glad we know for next time!!
Today we met with our oncologist Dr. Shore to get Blake's results. I must say I that they might be confusing to some of you. I somehow understand them-even as frustrating as they are. lol Ok-so Blake's MRI looks like the tumor grew-BUT-it was taken at a different angle than last time. Its pretty impossible to get him in the exact same position every time. They warned us about this early on in our MRI's. So due to the angle-the scan they took could make the tumor appear bigger-but it could also be swelling or shadows as well. We really wont know until our next MRI. The scary part is that if the tumor DID grow-Dr. Shore doesnt have a plan for us-so we would have to look into going to another hospital. Maybe St. Judes or another 'cancer' hospital. Im looking at positive as long as I can. Its SO easy to fall into the negative side-and so far Ive stayed as far as I can from the bad. ;) So the good news is that the area where Dr. Hornig did the surgery-where the scar tissue is-looks smaller! Thats good! So now we get to do more waiting. Dr. Shore would like us to wait 2 more chemo cycles, however if Blake's balance/coordination doesnt improve we will be getting an MRI after one cycle. Blake has been falling down a lot again. :( This could be due to the Vincristine-it causes 'slap foot' where his feet slap the ground when he walks. Dr. Shore checked his reflexes today and they arent responing like they should which is a good sign that its the Vincristine and not the tumor causing his weakness. We are also going to go back to the opthamologist to get his vision checked again. Just to make sure he is seeing ok still.
So not really the news we were hoping for-but its not bad news either. We really need all your prayers and positive thoughts! I will keep you all updated!!
Today we met with our oncologist Dr. Shore to get Blake's results. I must say I that they might be confusing to some of you. I somehow understand them-even as frustrating as they are. lol Ok-so Blake's MRI looks like the tumor grew-BUT-it was taken at a different angle than last time. Its pretty impossible to get him in the exact same position every time. They warned us about this early on in our MRI's. So due to the angle-the scan they took could make the tumor appear bigger-but it could also be swelling or shadows as well. We really wont know until our next MRI. The scary part is that if the tumor DID grow-Dr. Shore doesnt have a plan for us-so we would have to look into going to another hospital. Maybe St. Judes or another 'cancer' hospital. Im looking at positive as long as I can. Its SO easy to fall into the negative side-and so far Ive stayed as far as I can from the bad. ;) So the good news is that the area where Dr. Hornig did the surgery-where the scar tissue is-looks smaller! Thats good! So now we get to do more waiting. Dr. Shore would like us to wait 2 more chemo cycles, however if Blake's balance/coordination doesnt improve we will be getting an MRI after one cycle. Blake has been falling down a lot again. :( This could be due to the Vincristine-it causes 'slap foot' where his feet slap the ground when he walks. Dr. Shore checked his reflexes today and they arent responing like they should which is a good sign that its the Vincristine and not the tumor causing his weakness. We are also going to go back to the opthamologist to get his vision checked again. Just to make sure he is seeing ok still.
So not really the news we were hoping for-but its not bad news either. We really need all your prayers and positive thoughts! I will keep you all updated!!
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