14 Days

In 14 days, Alex will be bombarded with radiation. He will have to hold still for 20 minutes while invisible rays obliterate his immune system. He will have to sit in a lead lined room all by himself, while Eric and I sit outside, and watch his sweet face through a monitor. The total body irradiation (TBI) will be repeated twice a day for four consecutive days. He will be awake, and conscious through the procedures. While he will not experience any pain during the treatments, the after-effects are overwhelming.

Some of the fallout from the radiation is dramatic and quick.
His bone marrow will disappear.
His hair will fall out.
His fertility will be destroyed.
His digestive system will be in chaos.
His jaw will throb with radiation poisoning.
His appetite will vanish.
His mouth will erupt in soars.

Other consequences of his treatment may take years to appear.
His eyes will develop cataracts.
His growth will be stunted.
His lungs will be scarred.
His heart will be weaker.
His brain function will be altered.
His body may develop other cancers.

I am overwhelmed with what my amazing boy will be going through. We have been busy, trying to flood his memory with good times, so that all of us can draw upon them when in the depths of his treatment.

All of this is weighing heavy on our hearts, including Alex. The other night, he told me:

"Mom, if some kid gets cancer - not me, but another kid - and he doesn't make it - he dies, his parents can always go adopt another kid".

My heart stopped as I digested this statement, this permission to love another child if he doesn't make it. My eyes welled up with tears, and I held him close and told him that while yes, it is true, the parents could adopt another child, they would never stop loving the child they lost.

Damn it - he is only 6 years old...

A long time

It sure has been a while since I have posted anything... it isn't that I don't have anything to say. It is the opposite. Words flood my mind, trying to process what comes next for our family.

I have a few partial posts that I started, but couldn't finish for one reason or another. So, I will recap what has been going on, and where we go from here.

I will start with Legoland:

When we woke up on Friday morning, Alex didn't really want to wake up. We turned on the TV to watch the final Space Shuttle launch, and tried to impress on the kids about what a marvelous and somewhat sad event this was. Alex asked if he could be an astronaut, and for the first time, I realized that era is over. I ⇔told him he may still be able to fly into space, but just not o a Shuttle. But I digress... the point is, that we expect that he will recover from this secondary cancer, and grow up to do great things.

We managed to get all of us dressed, and ' out the door to breakfast, but it wasn't quick. Alex was dragging. We took his temperature, and it was slightly elevated (99.0). We encouraged lots of water, and watched as he perked up after eating.

Hoping that his elevated temperature was a fluke, we walked across the street to LegoLand. After a bit of confusion over our free tickets, we rented a double stroller for the kids, and headed into the park. Alex only walked for a few minutes, and then sat down. We watched helplessly while he faded in the short four hours we were there. We tried everything to get his temperature down...we didn't want this to happen again. In our hearts, I think we knew what was happening. We went to an air conditioned restaurant, and made him down a huge glass of ice water. Unfortunately, his fever was stubborn and we agonizingly accepted defeat. We carried the kids back to the hotel in the hot and humid San Diego sun.

Silently, we gathered a few things, and hit the road to the hospital. The traffic was awful, and when we arrived, we hoped for a quick turn around. That wasn't in the cards. With an ANC of only 100, we hung our heads, an made a plan. Eric took Tessa back with him to the hotel to check out. I headed upstairs with Alex to the Oncology ward. I instantly hated the room. There was a mural of a mom, sitting on the beach with her kids. It screamed to me..."ha ha look what we can do, while you are stuck here". And we were stuck, from Friday night until Monday morning. The Ronald McDonald house didn't have room for us, but they were able to get us a room at a nearby Holiday Inn for a VERY reasonable rate. I stayed in the hospital with Alex, while Eric and Tessa moved in to the hotel.

Alex really wanted a special Lego set, so he asked me to go back to Legoland, and acquire the prize. My cousin Michele, and her kiddos joined Tessa and me while Eric entertained Alex. We met up with my Aunt Louise, and cousin Trevor at the park, and had an enjoyable day. I admit, that I felt guilty about being there without Alex...but I was glad Tessa could have some fun with her cousins too.

My battery is running low, so I will post more after it is charged back up... I promise to get you all caught up soon.

Home

Touchdown in Portland...more to come

Crisis Averted

Temp is normal... we are outta here!

Not Quite A Fever

The nurse just came in and took Alex's temp...100.3

Since that isn't technically a fever, she is waiting half an hour and will try again. My toes and fingers are cramping...