Our ordeal...sorry it's so long....

I don't know where to start. We've had a long, horrible rough spell and I haven''t had the heart to write about it.…..well, here's what's been going on…

Tuesday 9/27
David had a second craniotomy. They removed a lot of tumor, some radiation necrosis, and a large cyst. They didn't get all of the tumor, but they felt they reduced the "mass effect" substantially and that the surgery should give David some relief from his headaches.

Tuesday evening--David had a seizure while in the neurosurgical intensive care unit. The drs told us this is not uncommon after surgery and they did not expect him to have any more seizures.

We had about one good week after surgery, then the headaches started back up. They are bad---on a scale of one to ten, they are eights and nines.

Monday 10/10
David had an excruciating headache and was rushed by ambulance to ER. They did a CAT and they didn't see any reason for the headaches. They doped David up a lot with Dilaudid and sent him home. The headache eventually lessened but didn't go away. David decided that even though he doesn't want to do it, it's becoming necessary for him to drop out of college. He is missing too many classes because he is either in the ER or going to different specialists' appointments. This was a very hard decision and it broke my heart and it really discouraged David. He so wanted to go to college……I still can barely write about it….I am so heartbroken and sad for him. He tried so hard….

Monday 10/17
Another terrible headache, another ambulance trip to ER, another CAT which once again showed no issues. But this time the neuro-oncologist ordered an MRI. After waiting for several hours, the ER doctor stuck his head in our room and said that the MRI showed tumor progression and that the neuro-oncology team was assembling to come and talk to us. This is barely 3 weeks out from brain surgery. I started sobbing and David hugged me and tried to comfort me and said, "You don't have to be sorry for me, Mom." My heart felt like it was being ripped from my chest. We waited another hour and a half….a horrible hour and a half….and then finally one of the resident oncologists came and talked to us and said that she didn't see any significant changes. I was so relieved but David was not sure. We talked and wondered why a trained team of radiologists would say there was tumor progression…..well, we found out on Wednesday that the resident was wrong…..

Wednesday 10/19
We went in for our scheduled appointment with our neuro-oncologist…the big dog. He said there is absolutely more tumor growth. In the three weeks since David's surgery, his tumors have doubled, maybe tripled in size. Spots that looked like a grain of rice now look like nickel-sized tumors. The doctor said that "this is rapid growth." We looked at the MRI pictures with all the blazing white spots and I felt like I was dying. David didn't say anything but he was deathly white and he had an indescribable look on his face….my heart twists in my chest when I think of his expression. It's HELL…..

Anyway, we discussed treatment options. The doctor said that because of how fast it is growing, we only have a small window of time to treat it with a special protocol called the Blood Brain Barrier Disrupter (BBBD) before it gets too big. This protocol causes some slight brain swelling and if the tumor is taking up too much space, then the swelling can be deadly.

Then during this appointment….we find out that David can't get treatment because….

Reason #1 Our insurance is denying this treatment again, not on the grounds that it's a clinical, but that it doesn't have a large success rate. It doesn't always help. There's no guarantees. And the patients end up dying, just not as soon. But it's David's best chance. The denial is a political issue. We are caught in a mess regarding the Oregon Health Plan….an offshoot of Obamacare or something, I don't know. I just know that there is a treatment that has the potential to help David and he is not able to get it because of a bureaucrat behind a desk that thinks he's not worth the money and the risk. I can't go there……

Reason #2 No room in the schedule. Patients are flying in from all over the country for this treatment, with hotels and plane reservations, hospital beds saved for them….so there's no time and no space for David to be treated. I think they would make room for him though, if the insurance approved the treatment….

Reason #3 Our doctor is going out of the country on Monday and will be gone until Nov. 3rd. He's the one who pioneered this treatment and he's the only one who can do it at OHSU.

I feel totally helpless and absolutely crazed by all of this.

I guess I need to explain the 3 treatment options that we have.....if we can get insurance approval.

One is conventional IV chemo….done on an outpatient basis. Just a regular IV drip. We don't want to do this one. David's tumors do not have the gene deletions and are more resistant to chemo, and his tumors are too aggressive--he needs more than conventional chemo.

Another option is intra-arterial chemo. An incision is made in the groin and a wire is threaded up thru the groin, all the way up to the aorta, as close to the brain as possible. Then a catheter is threaded up that wire and chemo is shot up that catheter. The chemo is delivered in 15 minutes but the procedure is a mini operation and takes about 4 hours. It requires a 3 day (minimum) hospital stay. The doctor says this delivery method amplifies the effect of the chemo by 10x.

The final option, the one that we really want, is the blood brain barrier disrupter. It's the same procedure as above, except a drug called mannitol is injected before the chemo, and it causes the cells lining the inside of the vessels leading to the brain to shrink and that allows the chemo to pass thru the blood brain barrier. This procedure is done thru both legs, on two consecutive days. I trequires a minimum 4 day hospital visit. This delivery method amplifies the effect of the chemo by 100x.

So our insurance denied the intra-aterial chemo too, not just the BBBD. But our doctor pulled off a miracle by calling the insurance company and he got them to rescind their denial for the intra-arterial chemo. The very next day, they made room and admitted David and did the intra-arterial chemo. They said that this will hopefully "cool things down" enough that David's tumor will not get too big for the BBBD treatment next month, if we can get insurance approval. Our doctor says he doesn't want to push too many buttons right now with the insurance company, but when he gets back in the country on 11/3, he will start working on getting the insurance company to allow us to do the BBBD for the next chemo treatment in 4 weeks. I do not know how I am going to survive the next 4 weeks, wondering if David will be approved for treatments. And he will have to get approval for any treatment before each and every treatment. And they want him to do these treatments for a year. I don't know how I am ever going to be able to deal with this kind of stress for a full year…..I guess I do not have a choice…..and if it's this hard for me, what must it be like for David?

David tolerated the intra-arterial chemo pretty well, except he was extremely nauseated and threw up for hours after the procedure until they finally sedated him into almost unconsciousness. He was in the hospital 3 days and I never left his side except to shower once and to use the bathroom.

Saturday 10/22
David came home from the hospital after the intra-arterial chemo. He was weak and tired and nauseated but so glad to be home.

Wednesday 10/26
David had a headache but tried to hold off on going to ER. I was in Salem (an hour away) at Wal-Mart with my daughter Christy and her two kids, and I got a text message from David that didn't make sense except I saw the word "seizure" and "ER." I immediately called him and he answered but he couldn't really talk and he didn't make sense. He sounded like he had had a stroke. We literally ran like crazy maniacs out of Walmart, dropped the kids off with Christy's husband, and drove to the ER in Portland, going over 90 mph the whole way.

David had walked to Starbucks for breakfast, and when he was outside leaving the store, he felt a seizure coming on. He tried to stay on his feet, but he fell against the wall and scraped up his face. Then he went totally down and totally seized. Before he lost consciousness, he said that people were running to him, people were stopping their cars and running to help him, putting blankets and their jackets under his head and under his body and over him….it makes me so, so very emotional. So many wonderful, kind, caring, total strangers in this world….I weep when I think about it.

When we got to the hospital, he kept asking about a Starbucks bag. We found it on a shelf in his ER room. It had a Portland Starbucks mug in it and a gift card. David managed to tell me that he had bought that for me right before he seized, because he knew I had wanted one and it was the last cup left. You could see on the outside of the bag the splash marks where he had spilled his coffee from the seizure. I will cherish that cup for the rest of my life. It is irreplaceable to me.

This time in the hospital, David didn't recover very fast. He could barely talk from the aftereffects of the seizure, but he said to me and Christy that he needed encouragement. He said that he wasn't going to make it to thirty, and what was the point in continuing to fight so hard when he just kept losing ground. He said he wondered if it was worth it to just live a few months longer like this….he never has talked like this before and it stunned me. I looked at his sister Christy---my baby, the person I'm the closest to on this Earth, who I also love with all of my heart….she was sitting at his head but back out of his field of vision, and her face was all twisted up and tears were pouring out of her eyes and down her face. I felt like I was dying and that I didn't have the strength to face this, but I held David's hand and I spoke in a calm, thoughtful tone of voice, and I told him that I can see why he'd feel that way, but that we needed to go back to one day at a time….that when he had his first surgery and radiation, it was rough, but things got so much better and that he needed to give this chemo a chance and that it could work and he could have more better days. He just laid there with his eyes closed and I don't know if I helped.

They came and did a bunch of tests, including an MRI. And finally a little good news. The MRI was stable…no changes from the previous one done a week ago when he got the intra-arterial chemo. We were so afraid that it was going to show even more growth…..

They finally got all the tests results back and they were all ok, so they let him go home. I think we got back to his apartment around 11 pm.

Today (10/28) the oncologist's office called me. I had asked if our favorite MRI reader could read the MRI that was done when we were in the ER, and let me know what he thought. He read it and agreed that it was stable…in fact, he felt that there was a slight reduction in the mass effect…that there had been some overall shrinkage. I AM THANKING GOD FOR THIS BIT OF GOOD NEWS. We really needed it. I asked if they think the chemo could have worked that fast and caused shrinkage, and they said absolutely yes. Oh, thank you, God!!!!

David had a pretty good day yesterday. His dad (my husband) went up to Portland and spend the evening with him. They got gourmet burgers and watched the World Series together. David had another good day today…no headache, and he walked a few miles, going to Starbucks, the bank, the pharmacy, and the grocery store. He was encouraged, but with some reservation, by the good report about the MRI. I think he's thinking…"let's wait and see….."

So…that's where we are today. I feel about 15 years older. But I am encouraged by hearing about some shrinkage and that David went two days without a headache and that he had two good days. Just taking it one day at a time….

Thank you to all of you who are thinking of us and praying for us. And thank you for reading this epic post. I really don't know how to do short posts….

Love and blessings, peace, comfort, and healing to you all….
Cindy in Salem, OR