The First Post
So we finally got our blog set up today and this is our first post. It’s the Sunday before Labor Day and we’ll give you the Reader’s Digest version on where we’re at to catch everyone up. After surgery, Alex spent 4 days in the hospital and when we finally got home it was bittersweet. We packed about 8 people into our tiny apartment and all watched a movie and although it felt like home we got our first real sense that things will never be the same. The whole hospital experience was a bit surreal and finally being in our own space made us realize that no matter what, things are different now. Our melancholy didn’t last long though because we realized how supported and loved we are and that gave us the courage to fully embrace this new “adventure”.
While we were in the hospital our radiologist and oncologist insisted that we go see Dr. Timothy Cloughesy at UCLA, they called him the “Guru” of brain tumors. They said he has a cutting edge way of determining prognosis which in turn will help us determine the best course of treatment, so after about two weeks of recovering we went to go see him. The consultation was really positive until he finally got a chance to look at Alex’s post op MRI’s. After surgery we were under the impression that our neurosurgeon had removed all of the tumor but Cloughesy was convinced that there was still tumor left. He was also concerned if it was even operable because of how close the rest of the tumor was to Alex’s motor strip. Fortunately after Alex’s consultation, Cloughesy was meeting with the tumor board (a group of specialists who deal specifically with brain tumors) and a neurosurgeon by the name of Dr. Yang looked at the MRI and felt confident that he could perform the surgery.
Flash forward to 3 weeks later and we still haven’t had the surgery because of insurance issues which is nerve wracking because you’re not given much time before the tumor grows back (more aggressively) without treatment. We are going to have the surgery no matter what this week and we’ll keep you posted as to when. The next step before surgery would be to have a specialized MRI where the surgeon can determine where exactly he can operate. In the midst of this we also are looking to move to the Westside to be closer to friends and UCLA (and hopefully find a much bigger place) but like everything else we’re taking it day by day. Thanks again to everyone who has supported us in this time…Please leave comments and feel free to ask any questions…we’ll do our best to answer them.
Alex and Amy
PRAYER REQUESTS for Week of 9/6/11
For those that are praying for us, thank you, it is making a difference. We ask that you continue to pray unceasingly and below are some specific ways you can be praying for us this week.
– Please pray that the MRI comes back clear and that there would be no need for further surgery
– If surgery does become necessary please pray that they are able to get at least 95% of the remaining tumor (that greatly increases Alex’s chances at long term survival)
– Also pray that they do not find any stage 4 cells
– Alex has ZERO DEFICITS from the first surgery. Please pray that remains the case after second surgery (One possible side effect of this surgery could be temporary paralysis or weakness on Alex’s left side)
– Insurance has been a tremendous headache. We are currently under an HMO in the Central Valley and the best doctors in the world for treating Alex’s illness are at UCLA and right now because of our situation Anthem Blue Cross is reviewing the possibility of switching us to a PPO (that would be ideal) we ask specifically that that could happen with no break in coverage or that we at the very least would be able to switch to UCLA Medical Group.
– Living situation (bright, restful, and at least two bathrooms so that Alex can have his own which will be especially important during Chemo)