March 22, 2002 (Friday)

Day 27

Last night I slept more than I have lately even though the nurse woke me around 3:00 because Jared wanted me. Kathy stayed with William and Jared most of the night.

I got up around 7:30 and walked down to the room. Merle is our nurse today. Dr. May came by and said that Jared was looking good.  His platelets were up and everything else looked good. He did agree with me that Jared's stomach looked swollen. Dr. May ordered x-rays so the technician came soon after. 

We had a quiet day. I went down the hall and took a shower. William and I walked to McDonalds to get lunch and came back to eat. Merle kept an eye on Jared while we were gone. Soon after we came back to the room, Richard came by. He said that Jared had early engraftment. The stem cells he received last week were doing their job. Jared's white blood cell count was 1,690 today. Before he left, he mentioned that Jared's fluid retention was a problem.

Soon after Dr. May came in and told us that Jared had VOD (Veno-Occlusive Disease). It is caused by toxins from the chemo affecting the liver. He said Jared's bilirubin level was high. He mentioned Jared's early engraftment. I had him write down the disease name so I could look it up later.

(Veno-Occlusive Disease (VOD) is a condition in which some of the small veins in the liver are obstructed. It is a complication of high-dose chemotherapy given before a bone marrow transplant and is marked by weight gain due to fluid retention, increased liver size and raised levels of bilirubin in the blood.)


Rhonda called and said she and Doug would probably come up tomorrow. Doug's dad was buried today.

Dr. Lucas came in next and explained more about the disease and his expectations. This could be very serious for Jared. They treat it by giving the patient two medications to help with fluid loss.

*Lord, I so want to know that Jared will be okay. I'm so weary and so want this to be over for Jared and me. I want us to go home but most of all I want your will. Lord, have your way in Jared's life, touch him. I pray that the bilirubin level will start going down tomorrow. I pray for total healing in Jared. In Jesus name.

We spent the evening getting Jared ready for bed and changing diapers, etc. I asked if I could stay in the family room again instead of going to the Hope Lodge. Layla, our nurse, said it was okay for me to stay. Doug called and talked with William while I talked with my friend, Colleen.

It is now around 11:00. Adam is staying at his friend, Timmy's, tonight and will stay there until...

Jared threw up blood again and once again received platelets. His mouth is looking red and raw. His skin is okay except for under his arms and in the diaper area.

*Lord, please have your way. Anoint Jared and bring healing to his body. In Jesus name. Amen.
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William wrote a poem the day we left for Birmingham. He read it to me later that day after we arrived. Since that time, I've looked for the poem. In the past, when I would find an old notebook, the first thing I would do is look through it just in case the poem was in it.

Tonight as I thought and prayed about what to add, I walked in my office and noticed an old journal that a friend had given me while Jared was sick.  I looked through it and noticed another poem William had written (I'll share later) was in the journal. I kept looking and in the very back I found the poem. The poem I've searched for all these years.  William gave me permission to share tonight...

We Miss Ya

Son... 

We miss ya, 

Hurry home,

Life is not the same as when you're gone.

We've fixed your bike. 

We've cleaned your room.

We've washed your clothes. 

We need you soon.

We feel alone!!!

Your smile, Your voice, 

Your laugh and your presence...

All were missed when you walked out that door,

So our love for you is now even more!

We'll hold down the fort,

Take all your phone call.

We'll bring your mail

And even deliver your Dell.

We miss ya, Son, 

We miss ya a lot.

We miss ya, love ya. 

Jared, give it all you've got.

Stay strong for us.

Take it all in stride.

We want to be by your side.

We miss ya, Son.

Come on home.

We miss ya, Son.

We feel alone!

Get well quick.

Come on home.

We feel alone.

Hurry home! 

Jared - Jacksonville Beach (1997)