Here I am! Finally able to give an update. Not sure how detailed it will be because I'm doing this as we sit in the doctor's office. He just had his spinal tap done and we have to wait an hour before leaving so he doesn't get a headache.
The results haven't came back yet since it was just done but the fluid looked clean. The doctor said that's a good sign. Sometimes the fluid comes out cloudy or different colors but his was clear. Jarrod felt no pain during the procedure since he still has numbness.
Jarrod's doctor was not able to push the referral to City of Hope for radiation. I guess they don't even take our insurance or medical group at all so there was nothing anyone could do except to pay out of pocket. The cost for treatment there would be almost a million dollars and I am speaking literally. The door was shut to City of Hope but the radiation oncologist we saw in the beginning is willing to follow the guidelines that the doctor at City of Hope wrote out. We went to another consultation with the RO we saw in the beginning (Dr. Z) and felt 100x more comfortable this time around. We actually saw his assistant since he was on vacation and she was more familiar with his tumor and was really knowledgable. She said that they'll even talk back and forth with the doctors at City of Hope. We feel so much more at peace now. After that consultation we needed to get another MRI done to see if there's any sign of tumor (even if small) because we would have to do another surgery before radiation if so. We also needed a spinal tap to see if there were any cells in the spinal fluid bc that would change the radiation treatment. If there are tumor cells in the fluid he would need radiation from the brain to the end of the spine. That would mean more risks and much more side effects--short term and long term. Pray for God's favor in this please. We do have a praise report though...the MRI came back clean. Still no new tumor! Thank you Jesus!
Radiation will be starting very shortly. If not by the end of this week then most likely next week. He will need to go M-F for 5-6 weeks. With that said, we are setting up a driving schedule since it would be too difficult for me to take him everyday with the girls or even finding a babysitter for that many days. If any of you are willing to take on a certain day/days of the week to drive him, please send me an email: nicoleknick@yahoo.com. The office is located in Covina and we live in Chino Hills. It's about 20 minutes away from where we live. The hours will vary because Jarrod is also going through physical/occupational therapy throughout the week. We appreciate any time you can give even if it's just one day. Again, please send an email if you are willing and able to take on a day. Thank you.
Everything else is going well. Amariah is sleeping through the night finally and we figured out a new nightly routine for Hannah that has been helpful. Our tummy viruses are gone and we're feeling so much better. Things are calm and peaceful for now. We're getting caught up on our rest, preparing us for our next chapter...
Oh praise God on the clear MRI...and sounds like the spinal tap should be clear too. I am glad to hear that even though City of Hope is not a possibility (WOW a Million DOLLARS?!) the docs there will work with your docs. That is really comforting news I am sure. Hopefully he won't have to do the more radical radiation. Thanks for the update....still praying. Blessings to you all! Oh, and yay on the baby sleeping the night...a good nights sleep just makes all the difference. : )
ReplyDeleteThanks so much, Debbie! You're prayers and support mean so much to us.
ReplyDeleteI forgot to add something about the volunteer drivers:
ReplyDeleteUnfortunately, we would not be able to provide gas money--that is part of the reason we need volunteer drivers as well. It would be very costly for us to drive there everyday. Thank you for understanding. xoxo