Tuesday, August 28, 2007

MRI Results

I know many of you have been anxiously awaiting news from yesterday. Sorry for the delay but the doctors were also reviewing things and we did not get the call until later in the day.

SO here is the news:
The spots on his brain and the one they had been concerned about last time are stable- no change. The spine in the thoracic area- appeasr to be slightly larger - only by 1mm so it is negligible. It may just be from a different angle.

The tumor at the base of the spine appears to be the same. There was some concern that it had thickened and the debate is still out- but it appears to be about the same. It took up more dye this time and more evenly. That is a bit concerning. There was some debate about dye uptake on the spinal cord but consensus seems to be that it is just a natural function of dye uptake.

So what is the plan? The plan is we will do a spinal tap next week to see if there is disease in the spinal fluid. We will change his meds to the SAHA study- the docs are working on the logistics of this. We can always go back the Temodar/Tarceeva combo if that fails afterward since it kept him from progressing too much.

His neuro exam the other day illustrates he has decline in his nerve responses in his sacral area so we are seeing clincial evidence of something. We will continue to give him the higher dose of steroids and give him enemas if he cannot go to the bathroom for more than two days. We will need to catheterize him this week to test how well he is emptying his bladder after he has gone to the bathroom.

We will send his films to NY, NIH and St. Jude's to see what they think. We will do another MRI in two weeks so he will have the prerequistes for the SAHA study.

SO that is it for now. We'll update as we have more information.

Monday, August 20, 2007

On a lighter note

Mason showing off his new DC United jersey
They love the soccer ball logo on the side

Steel Magnolias moment

For anyone who had to be an advocate for someone or had to respond in times of stress you'll appreciate the reference.

The scene:
Friday, Mason had a friend over and starting yelling about being in pain. Fast forward and he is writhing in pain b/c he cannot pee. We call the doc and catheterize him to relieve pain. He falls asleep from crying so much.

We wound up in the ER to test his urine later that night. He had to lie down on the seat b/c he was in pain while Mom was on the phone with her friend Mary trying to strategize what to advocate at the hospital for him. We get there he is still not great but the medicine we gave him at home begins to kick in and the we get a urine sample. Mason informs the nurse that only his mom will catheterize him, not her. Very politely and clearly.

ER doc and mom exchange glances knowing what all this urine retention, possible infection could mean. Very nice and helpful. Shift change and I get a new young nurse. I go and ask about the urine test results, She comes back in and says"my! he looks just fine. Mom you should NOT jump to conclusions on what this means. etc etc etc BLAH BLAH BLAH. "

Mom tries to remain polite and calm and quietly says- "I appreciate that and yes he looks fine, but you have no idea." Meanwhile in my head I am screaming at her- FINE you think this is fine? Is it fine that this sweet little boy may have another recurrence? Is it fine that he only wants to be at his brother's soccer game tonight instead of sitting in an ER bay? Is it fine that he was writhing in pain calling for his daddy and mommy to help him only two hours ago? And many other profanities in my head to respond to her comment.

But Mommy kept it together smiled and made sure we got out of there as soon as we could. The ER doctor gave me a big hug before we left and just met my eyes and said Hang in there.

Just reminded me of that scene in Steel Magnolias when she loses it in the end with her friends. Not sure why but it did.

Wednesday, August 15, 2007

A funny story and a sad story

First the funny one:
We have been giving Mason some massages to help him relax and wind down at night. After getting his back rub, he turned over put his hands behind his head and said, "This is the life! We should do this every night!"

Now the sad one:
Last night we were laying in bed and Mason asked me what heaven was like. He wanted to know if there were any scary bad guys there, what do you eat, who is there etc etc. Boy that was a tough conversation. But I kept it together and told him what an awesome place it is, that Poppa and my Mommy were there, my brother and so many people from our family that take care of each other. Then I told him he probably wasn't going to go there for a long time, that he is stuck with his mommy and daddy here, cracked a few fart and gross jokes and changed the subject. My heart is still recovering from that one.

Tuesday, August 14, 2007

The roller coaster ride continues

Sorry it has been a while since the last post. Mason had the fever after vacation and some vomiting, but we started the chemo anyway and he finished last night. He has not been eating or drinking very well, so we struggle a bit with energy etc. He passed on camp this week but will go next week with Mateo if he is up to it.

He has an appointment with the docs on Thursday to check in and we will see what is happening. Meanwhile, he went to the DC United/LA Galaxy Game with help from the fund, gone school shopping with his brother and has been helping Francisca clean around the house. We will go to the water park later this week and see friends this weekend if all goes okay.

So this crazy life continues......

Tuesday, August 07, 2007

Medical Update

We went to the hospital last night for bloodwork to rule out infection and a urinalysis to check for a bladder infection. All appears to be clear so far. The doctors checked him today and his neuro exam was good. He got sick at the clinic so it appears it may be viral for the moment. They will recheck him on Thursday to be sure all is well. If he continues to have headaches and vomiting they will do a CAT scan Thursday. Never a dull moment!

Monday, August 06, 2007

Celebration of Life Fund update

Folks, we have been overwhelmed by the response to the Celebration of Life Fund. Thanks again to our Arlington friends Laurel, Caitlin, Cynthia and others, for starting the fund. One of the amazing things is that, besides the wonderful generosity of family and friends (new and old), we are getting cards and notes from people who don't even know us (friends of friends of friends), but are touched by Mason's story and want to help in some way.

If you sent a note or card to Laurel, you will receive a card from Mason. If you sent a check to the bank, sorry we don't know if there is any way we can find out who donated in that case.

We wanted to share with you the story we received yesterday of about the daughters of our friends Jeff and Jennifer Muller (friends of Kirk from Peace Corps) and their church. These amazing young girls, Hallie, Annie and Bryn, whom we had the pleasure of seeing when we visited the Mullers in Florida in May on the Disney World Make-A-Wish trip, wanted to do something to help Mason. Well, their Mom's email to us, that we received yesterday, tells it best:

"Hi Kirk, Danielle, Mateo, Mason and Francisca-

We had a very exciting morning this morning. When Mason's Celebration of Life Fund was established we told the girls about it and they wanted to do something to contribute. They decided on a bake sale. We asked our pastor if we could hold one at church after the service one morning. He was concerned about how much money we would make since it's summer (we have lots of snowbirds as members plus a lot of folks on vacation) but we decided it was making a contribution, not the amount of the contribution. So...

We chose Aug.5, made posters and placed it in the weekly bulletin to advertise, baked all day yesterday and made $1,441.00! We are very lucky to have found a church that fits us and today proved what a wonderful bunch of people we spend time with- I had to empty the donation jar numerous times! (We had $260 before we had even baked a cookie- people who knew they would be out of town and wanted to be sure to contribute!) Your family has touched a lot of people who besides buying baked goods :), will keep you all in their thoughts and prayers.

Looks like you all are having a wonderful time on vacation. Mason, you look like a different boy than the one we met over Memorial Day weekend- doesn't look like much slows you down these days! Hope the back pain has subsided and that it is just the result of lots of fun. Hallie and Annie went to soccer camp last week and really liked it but don't think they are ready to keep up with you yet Mateo!

The girls go back to school on the 21st so our summer is winding down- we've got plans this week for school supply shopping- can't believe it is here already!

Take good care-
Jeff, Jen, Hallie, Annie and Bryn"

Friday, August 03, 2007

Still enjoying vacation but some new pain

We are still having a good time fishing and swimming. Mason has been having some back pain in the spot where the tumor is. He is not constipated so it is a bit concerning. We got him some stronger pain meds today in the hopes that it will alleviate the problem. But it will need further investigation when we return to DC on Monday. Just pray it is not growing and it is just that he has been so active this week. We wait and worry.