in the waiting

the wait

the waiting

the hope

the hoping

being in it takes an immeasurable amount of brain power.

to not think too far ahead

to not think too far behind to how things were

or how you wished them to be.

it is a lot of mental running

to Him

and back to you

and then back to Him again.

I have a friend whose son God called to Heaven too soon for our earthly, fleshy liking.

I remember her saying once,

"I just want to raise four children."

Sometimes, when the knot in my throat is too big to swallow, I find myself remembering her words and begging God for the same thing.

I just want to raise six children.

And then my rational side kicks in to remind me that my pain means no more or no less to God than other parents who have lost children.

I strangely find comfort in seeing how God has stitched that wound of loss back together for others.

It will always be an ugly scar but somehow, in ways only He can do, He makes it so that it slowly becomes less of a gaping open wound.

After surgery to remove the tumor in his spine, we went to University of Florida to start the process of building a vaccine for Colby.

The week there was spent recovering from the spine surgery as well as doing apheresis so that Colby's T-Cells could be separated in his blood. They are currently "hanging out" in a petri dish with the RNA from the tumor so the vaccine can grow. It will take about nine to ten weeks to grow the vaccine and make sure it is safe.

In the meantime, Colby started oral chemotherapy again last week. Our goal is for the chemotherapy to slow and shrink the growing of the cancer cells in his brain and spine so that the burden on the vaccine will be less. As with the last round with chemo, Colby has been extremely tired and sleep usually finds him wherever he sits but no throwing up this time...at least not yet (so we are just praying the nausea away).

Specific prayer requests include...

We keep our eyes on Jesus and God's will. And, as a family, that we give each other lots of grace.

His complete healing of Colby.

Over the next nine to ten weeks while the vaccine is being built, the chemo works to slow/shrink the growth of the cancer.

Colby was having headaches and nausea due to the increase pressure in his spine/brain from the cancer.  He had a spinal tap at the end of last week which relieved the pressure as well as headaches and nausea.  We are praying that the chemo will help alleviate some of the pressure so that he will not have to have a shunt placed in his brain.

We are literally day to day, usually hour to hour, in our emotions. When Colby is down physically, we are down with him. When he feels well, we all loosen up and realize how much we were holding our breath. The down days make the good days seem that much more sweeter. Mentally Colby is ready to be a normal kid again. When he is feeling well, it is so good to see the old silly funny Colby.  My prayer is that we continue to have joy in the hards. Even on the worst of days, I thank God for the privilege of taking care of him.

"The Lord is near to the brokenhearted and saves the crushed in spirit."

Psalm 34:18

I was led to this verse tonight.

Oh, there is so much truth in it.

As tough as it is and as much as we all long for healing and to climb out of the valley, I know there is so much He has shown us that could not have been revealed any other way. There is a bittersweet gratefulness in knowing He is here, His will and plan is perfect even if it does not feel remotely close to perfect or good or peaceful.