What a day...

Morning Checklist:
- Wake Sydney up
- Get Sydney to school
- Put cream on Jenson's port
- Get to hospital oncology clinic by 8:30am to have his port accessed
- Arrive at downtown hospital branch by 9:30am for check-in/prep prior to 10:30am PET scan

Getting Sydney to school goes very smoothly. I'm learning from rookie mistakes earlier in the week. We leave early now.

Comforting Jenson because he can not have food or drink is not as smooth. He's 2, so of course he's not happy about it. We try every distraction technique with no luck. Finally, I decide to explain the facts to him. He needs a test and can't have anything to drink or eat until after it. But after the test, he gets anything he wants. He responds between tears and deep breaths, "Ok Mommy."

We hurry up to our first hospital stop - the oncology clinic. They access his port (which is where the anesthesia will be administered) and do blood draws to check his blood counts. We hurry and leave to head downtown to the other hospital...the one with the PET scan machine.

Traffic. It's past 9am now, so we thought we'd miss most of it. No such luck. The phone rings... it's the hospital we just left. The blood results are back already, and Jenson's hemoglobin is low. They say it's ok to do the PET scan but immediately after we need to come back for a blood transfusion.

Another blood transfusion. Seriously. A four hour blood transfusion has also now made the medical list for today.

Doug skillfully navigates through traffic. We hurry up and check in around 9:40am (a few minutes late, but should be fine).

Then we wait. First it's waiting at the check-in. Then it's waiting in the radiology department. Waiting with a hungry 2 year old is no easy task. "I want fishies mommy. I want yogurt melts" Jenson says. "After your tests you can have ANYTHING you want buddy," I tell him. "Okkk..." he says.

Our appointment time at 10:30a passes. Jenson says, "When they call Jenson Aaron?". So cute he that he knows they will call his name. "It's taking long time" Jenson says. "You're right buddy, it is taking a long time" I reply.

They finally take us back to another waiting area around 10:50a.

Then it's waiting, waiting, and more waiting. He's getting more and more scared the longer we wait. We do our best to comfort him. At noon, they finally put Jenson under and begin the procedure.

Doug says being at the hospital is like being in the military... lots of "Hurry up and wait". Very true.

Jenson comes out of the procedure at 2:15p safely which is always a huge relief. He's ok.

We wants milk and some goldfish and crackers - we are happy to give him anything he wants.

At 2:45 we arrive back at the other hospital for the blood transfusion. We then wait, and wait some more. The good news is he's very comfortable at our main hospital so is much more at ease. He's sitting on my lap in a room watching "Cars". Finally around 4:15pm they begin the blood transfusion.

Our oncologist comes in shortly after with the results of the PET scan.

The headline - Worse than before.

More new lesions around his eye sockets. More lesions in his legs. New lesions on his hips.

I'd like to say we didn't expect this, but we did. Your eyes don't change shapes for no reason. It doesn't make the news easier though as now it's your reality. We have to grieve another set back... we have to face the fears again of losing him.

Doug says, "I feel like I've been punched in the stomach." I feel the same.

The doctor shares it's time to move to the next level of chemo drug. 2-CDA is our next option. She says it works for 50+% of cases... could this finally be the time we have good odds with this disease? Will God finally chose to heal him or will we continue down this painful path?

I dare to ask the next question..."I know this is the most extreme chemo used, so what if it doesn't work either?".

She replies, "Well, then we try different types of therapies like finding a sibling who can be a stem cell or bone marrow donor".

The doctor can see Doug and I are starting to get emotional at this news. We can't help but picture poor Sydney now pulled into this medical mess. Poor innocent Sydney, just like poor innocent Jenson. It's not fair.

I say to her, "It reminds me of the book 'My Sister's Keeper'...that gut-wrenching book about a sister who constantly donates her own blood and bone marrow to save her sister."

I'd been somewhat holding it together, but I start to take deep breaths and cry now. I can't get the image of Sydney hooked up to a machine trying to help her brother out of my mind. Jenson immediately curls up on my lap to comfort me. Really, could he be any sweeter? I should be comforting him, my poor sick boy.

I start praying in my head: God, please don't allow this to happen to our family. Please let the 2-CDA work or heal him with your hand right now.

Our doctor continues to comfort us and answer all our questions. "We'll know a little more after the MRI tomorrow morning. We'll talk more then."

At 8:10pm the blood transfusion is complete, and we head home. We'll be back at 7am bright and early tomorrow for the MRI.

Jenson is THRILLED to be leaving the hospital and so are Doug and I. Jenson says, "Go get yum-yums at McDonald's?".

"You can have anything you want buddy," we say. McDonald's french fries it is. "Yummy!" he says in the backseat as he's eating his fries.

It's the little things in life you have to cherish...like yummy french fries after a long day. We NEED Jenson in our family to continue to remind us.

Kristin