Ups and Downs

Sometimes it feels like we're on a teeter totter. I remember being a kid going to the drive in movies and always so glad to play up at front on the playground. You know, the old metal slides, merry go round and wooden teeter totter. I think I enjoyed the up and down back then, but not so much now as an adult.

Megan has had some good days lately, but then some really horrible days too. I keep hoping she's going to go back to school. She told a reporter from the Suburban Journal who wrote an article about Megan and Kelsey both, that she wanted to go back to school and be normal again and I just want that to happen for her so bad. It's been 4 months since she's been out of school. That's longer than a summer break, and we're almost upon the summer break.

She was finally able to have an MRI two weeks post-treatment to see what is going on in her brain. When they are in the middle of the test and they call the doctor to ask them to order two more kinds of detailed images based on what they saw, and then come out to ask my permission, you know it isn't good. Two days later we went to see the neurologist at St. John's. Good news and bad news. Good news is that the blood clots are all gone!! That's huge. That means she can come off the blood thinner cumadin that was giving her many nose bleeds a day and making her get weekly blood draws. Bad news is that the white shadowing on her brain didn't go away and so he gave her a definite diagnosis of Tuberous Sclerosis, which is what Kelsey was diagnosed with in December. (In December Kelsey had an MRI that found a small brain tumor, as well as the same white matter, tubors, that we already knew she had. On Jan. 4 they found small tumors in both of her kidneys also.)

The Dr. then also said that she most likely has a pseudo brain tumor. That is when the brain thinks it has a tumor, but it really doesn't. So the pressure keeps building with the increase in spinal fluid. So he recommended that she have a lumbar puncture, spinal tap, after being off the cumidan for a few days. He called the oncologist who agreed and so last Monday the oncologist did a second LP. (She had the first one while she was in-patient in February.) This time her spinal fluid level was a 42. A normal level is 10-12 and a pseudo tumor levels begins at 32. So he took off 1/2 her spinal fluid bringing her down to 21 cc's - so she still has twice as much as she is supposed to have.

So it was 5 days later and she was still feeling awful. I called the oncologist on Friday and he said she's in a vicious cycle and there really isn't anything else he can do for her. He thought maybe the dilaudid narcotic is making her so nauseous and have such bad stomach pains. So we tried staying off the dilaudid for the weekend and stick with 4 ibuprofin and 2 Aleve at each dosage. She seemed fairly ok on Friday afternoon and Saturday morning for the fundraiser at O'Charley's, (which was a blast!) but by Saturday afternoon she was bedridden again feeling awful. Her head pounds, ears hear machinery sounds in her head, eyes hurt and vision is blurry. Then she gets nauseous, has terrible stomach pains and is dizzy. So back to Dilaudid.

Our original plan in all this was to go back to school on Monday. So she had her friend Shelby spend the night with her on Sunday night and I took them to school in the morning and Shelby helped her inside with all her books that she'd had at home. She did great! She visited the nurse, did some reading work in the guidance office during first hour, went to her second hour and by then was feeling so horribly that they called me and the school counselor took her home. And that is where she has remained the last 2 days.

I called the neurologist yesterday afternoon and they decided to put her back on prednisone for two weeks to see if it will bring down the pressure in her brain. It took 7 phone calls to get it all figured out between having to get permission from the oncologist who said he wanted the neurologist to call it in. Then it never got to Walgreens. Then call back to see when it would be called in. Then Walgreens said they had it but the directions didn't make sense because it was a complicated tapering from high dose down to small dose over 14 days. So back and forth we went. UGH. I worked at home this morning waiting to get the medicine before I had meetings, but it never came through by 11:15. UGH. So she got it after I picked up Kelsey from after school homework help. Now tonight after taking her first 2 pills she says her face feels like it's all hard on the inside and it's all tingly. I called the exchange and the neurologist called me back. He is just so nice. He said that the tingly and hardness aren't anything to worry about. Heck, she's been tingly for months from being on the Diomox, but the hardness is weird. He said if the LP would have worked, she would have been better after a day. Sure wish I'd have know that. He said to give the prednisone 48 hours and if she isn't better by Thursday morning to call him and he will get us in to see a neurosurgeon. That's the next step. A possible shunt being placed in her brain to keep the spinal fluid from building up in her brain. He says, but if the LP didn't work, he's not sure a shunt would be the answer. But it might be time for a consult with the neurosurgeons.

Great. This is what we have been trying to avoid since we first found the brain issues. But, whatever it takes for her to feel better. It's been almost 4 months of constant pain. It has to come to an end. Both of us are just weakened by it all. Megan has kept such good spirits considering everything she's been through. But she's ready to feel better. She sent me an email one night at 11:45 when she just couldn't sleep because of the pain, and I was bugging her about going back to school. It just made me cry. "I hate that I never feel good and that I have no way of feeling good. You just don't get it that I really do not feel good and I feel like crap. I keep feeling like I am going to barf and I am so nauseous and I hate all this." So, if she doesn't go back to school this year, so be it. And if it's brain surgery she needs, then by golly we're there.