Max Update! March 11, 2004

March11th

Hi everyone we've got a lot of news to update everyone on since last time.

First of Max continues to show really amazing improvement in his rehab. Linda, one of the physical therapists told me today that his recovery has been faster than any kid she could remember! He's showing more and more of his personality, laughing more, initiating conversation - Little by little he's getting back to himself! Only a little over a week ago we were worried that he might never lose that "flat affect". So that's something we're really thankful for. Also, he continues to show positive signs that he won't need a shunt. A CT done last friday looked "normal" according to Dr. Lypson - one of our awesome neurosugeons. Really great news. We're already finding this is a roller coaster ride though and we can't take anything for granted - He still may need a shunt but right now it's great news.

We got a jolt last thursday. The hospital made a mistake and didn't process the fluid taken from Max's spinal tap the previous week as they were suppose to. They forgot to test it for tumor cells. So Max had to go through it all over again. This was a pretty big mistake - we were infuriated at the time and made sure the hospital and the docs recognized it. It's a strange thing - they have amazing docs, great nurses and people that really care but we've seen more than one case where they have a really hard time working together. Something we'll have to remember. In some ways it was good though because it meant they could get Max's stitches out at the same time while he was asleep, that way he wouldn't feel them taking them out. So last Wednesday we got ready for another "procedure", accessed his porta-cath for IV anesthesia and waited while they performed the LP (lumbar puncture), took out his stitches and tested "opening pressure" - this has something to do with pressure in his head and is an indication as to whether or not he'll need a shunt. This turned out to be low - which is good. Unfortunately the good feeling didn't last very long. On Thursday evening we found out that some tumor cells were found in Max's spinal fluid.

This is pretty unusual. We'd been assured by doctors saying that they rarely ever see this in cases like Max's. It turns out to be kind of a big deal and it changes the way we'll deal with Max's treatment. It's been tough to get our minds around. The "get Max Well" train had been steaming along, things were going well, this wasn't suppose to be an important test. Just routine - except it wasn't. I know this is hard for all of you to hear about too. I wish it wasn't this way. A wise neuro-surgeon once told us - "it is what it is". Funny how wise neuro surgeons and wise baseball players think alike.

With strong encouragement from friends, family and doctors, the train's rolling on. Don't know what we'd do without all of you. Attached is the email exchange between me and Dr. E late thursday. He came by on Friday night just to talk with us. He is a spiritual genius.

Believe it or not there are people that would trade places with us and we still do have a ton to be thankfull for. They got all the tumor out, it's the type of tumor that responds well to treatment, his recovery has been astounding, and his prognosis is still good.

Last week we met a family going through the same thing we are. They have a daughter, Amanda, who's just finished the radiation therapy portion of her treatment. She came into the hospital with the same tumor Max had plus tumors running up and down her spine. She's not been able to speak for 2 months and was pretty much out of it for a good part of her treatment. She's a darling girl who loves animals and doesn't deserve this either. We're praying for her.

It changes your life.

We were presented with the option of treating Max with a more intensive, investigative trial specifically designed for cases like Max's. There are only a few places in the country that this is offered and this is one of them. The whole point of it is to safely improve his prognosis. It's been under trial for 3 years and the doctors assure us that this means it's safe and at least as effective as the standard treatment. In theory it should be more effective. The side effects are also more severe and could be serious. We thought really hard about it and decided to go with the more intensive trial. It's a tough decision - we met with the oncology team 3 separate times to get our questions answered and read through the documents many times. I was saying the names of chemo-therapy drugs in my sleep (I'm not kidding). It's a good decision.

At least we don't have to worry about under treating Max - we'll be treating this as aggressively as we can. We've got great doctors, great medicine and some of newest science in the field. Most of all we have a kid with an indomitable spirit and a close community of friends and family that love Max deeply and are praying for him every day. God Bless all of you.

The train rolls on.

On Tuesday Max got to go swimming with his physical therapy teacher, Kristie, in the pool at the hospital. It was really great. The water kind of helps Max keep his balance so that was cool and Max was able to swim really well! Kristie dropped a bunch of toy fish and dinosaurs into the water and they sunk to the bottom. She had Max dive down and pick them up. Some were pretty deep and he really had to work hard, pulling with both arms, kicking to get down to them. I was in the pool too with goggles and I could see him fight to reach the toys. It was glorious. His arms moving, legs kicking muscles flexing and reaching, reaching, close... not quite. Back to the surface for air. Try again. Sometimes Kristie had to make him stop for a minute to catch his breath! - He didn't want to stop - not even to breathe.

The rehab team has decided that Max has improved enough to be discharged from inpatient rehab. We're going home! We're planning to be home Friday evening sometime. We'll still need to bring Max in every day for treatment and rehab, but it feels so good to know that we're through another phase and we can all be together again. Surgery, ICU, Recovery, Rehab - onto Treatment.

Max started treatment yesterday (Wednesday). It begins with Chemo therapy, in the clinic at children's and then we drive to the UW for radiation therapy. Every day for 6 weeks. Dr. Ellenbogen warned us, treatment is going to be the toughest part. That's hard to imagine after what we've been through already but we're trying our best to brace for it. Max was pretty nervous on Tuesday night, but after it was all over Wednesday afternoon he seemed really relieved. On the way to his radiation Max got up out of his wheelchair and actually walked all by himself in the radiation room! It was the first time he'd walked on his own. We're a little worried about him falling down, but hey - it was still very cool!

This has been a long one, there is so much to say and it's been a while since the last update. We really appreciate your loving energy, kindness, prayers, and patience. It must be really hard not knowing what is going on. We'll try to be more timely with mails going forward.

God Bless