Without going into too much detail, I'll just give you the summary of where things stand today. Two weeks ago I had gone to the eye doctor as I had noticed my vision to have greater fogginess, and he said it looks like my retina was close to detaching and the reason for the increased fogginess was due to the fluid that the tumors are producing. The fluid is causing the retina to detach from the back of my eye. He reiterated there was nothing he can do from this end until I see the eye specialist in Grand Rapids, MI, to see if he has any ideas to approach the situation without causing further vision loss.
Little did I know, the following morning, I woke up and heard the news from our pediatrician that my son had a brain stem tumor and cyst, and my blood pressure must have significantly shot up because 10 minutes later, my house turned white. I was home alone and thought I had a stroke. I had no pain and was trying to figure out what happened to me. Thank God for the iPhone 4S with Siri that I was able to contact my neighbor Suzanne, who immediately came over to see if we could determine what happened. We called my eye doctor, who was running between surgical rooms as well as giving a presentation at Rush Hospital, and was not able to talk with him until later in the afternoon. Dr Havey, my internist, thought it could have been a bleed behind my eye to the brain, and wanted me to race down and have an MRI scan. We felt this was more eye-related and opted to see the doctor in Grand Rapids instead.
Luckily, he took me as an emergency case the following day and explained that I had a large bleed, which was causing me to not see out, but he felt that as with any bruise, it would be a matter of 2-3 weeks before the blood would re-absorb and my vision would return to normal.
Regarding his recommendation to treat the retinal detachment/increased fluid, he gave me three options. His #1 choice is systemic chemo with a drug called Avastin. He has had experience personally with this drug 10 years ago and felt that it would be beneficial for me as well. His choices #2 and #3 involved radiation therapy, one being whole eye radiation, and the other being focal radiation to the tumors, yet he feels I would get radiation damage 2-3 years down the line even though I would probably get better results initially.
So, for the past two weeks, I have been focusing on getting approved for this drug, which unfortunately is not approved by the FDA for my diagnosis. I've been denied by Medicare as well as my secondary insurance, and have had doctors write letters to the insurance company saying this is a last-resort drug treatment and I have no other option. In addition, we have submitted articles of studies that I have found related to my diagnosis where this drug has successfully been used. I should have an answer in the next 7-10 days. If denied, I will have to come up with the amount out-of-pocket or see if the manufacturer (Genentech) will give me a discounted rate or donate several doses. This drug is very pricey (e.g. $14,800 per dose), of which I need two per month.
Say your prayers and wish me luck that my appeal goes through. I hope it's a go because presently I'm nearly blind. I see very limited shadowing and have again had another bleed a week ago. My doctor has upped my blood pressure medication and tells me to rest and relax, which I'm trying to do with the increased family stresses and Tyler's health issues.
I see the oncologist tomorrow to see if I qualify to take the drug, due to my medical health and increased risk of bleeding that I have. In addition, I am running my own trial and I'm getting MRI scans of my brain, complete spine, kidneys, and abdomen. I'm also seeing the dermatologist tomorrow to evaluate my skin to see if this drug may have any effects one way or another. I thought I would get a baseline on everything as well as my eye to see if this chemo will help others with VHL down the road. Several of the articles I've found show this drug to be promising, so I'm hopeful it can help me, too.
As for my gyne situation, I need to postpone the surgery until I can be cleared medically with my increased blood pressure and possibly being on a chemo drug.
As most of you know, my son Tyler was recently diagnosed with a brain stem/cerebellum tumor and cyst. Fortunately, the surgery couldn't have gone better. We used a pediatric neurosurgeon, who has never operated on our family before, from Lutheran General Hospital. We found not only his expertise but the staff to be top notch. Tyler did so well that he was discharged on the 4th day. He no longer suffers from nausea, vomiting and dizziness, which had been constant for about a month before the surgery. He now just has post-op incisional head pain and neck pain, and headaches from mild to severe. We see the doctor Tuesday for our follow-up appointment where we'll get a back-to-school date. He has missed two weeks of school and will probably miss two more. Tutoring should start later this week.
He's actually had a lot of stress besides just brain surgery. He started the summer with mono in June, tore his left ACL, and suffered from infections and then the neurological problems. In addition, Tyler underwent surgery on his left knee to repair his torn ACL on August 16th. One way or another, he's been unable to play varsity soccer -- his passion in life. He had so looked forward to his senior year and so far but it's been a horrific start. Fortunately, upon returning home from the hospital, two of Tyler's friends surprised him with having a salt water fish tank up and running in his room to help him relax, with beautiful coral, clown fish, crabs, starfish and more.
My sister Robin flew out prior to Tyler's surgery for a week to help with Tyler as well as with myself. While Tyler was in the hospital, Steve took the night shift and Robin and I spent the full day with him. I couldn't have done it without her, especially with the vision loss these past few weeks. Thank you Robin!
Fortunately, Steve's company has been very understanding and told him to take off what he needs throughout the course of Tyler's illness. And, somebody's on his side because his sales are better than anybody else's in the company, so at least his job is going well.
We continue to count our blessings and are thankful for our friends and family, who have been incredible during the past few weeks, as well as always. I can't personally thank everyone enough for all you've done. I hope that your good Karma will be returned to you one day.
