Dear Friends and Family.....

When I last wrote Rachel was back in the hospital. She is still there. Last Thursday, as reported in the last email, she was sent from Intensive Care Unit (ICU) up to the oncology ward (4-east) and things were slowly improving.

Sunday night I relieved Diana on 4-east. All seemed well. Rachel was using a loose oxygen mask and puttering about. But by Monday morning Rachel's condition was beginning to deteriorate and by the afternoon she was back in ICU. The more firmly attached oxygen mask that pushes air into the body (called a Bi-pap) was on her and the amount of oxygen being pumped into her was increased. Her body's oxygen saturation count was continuing to drop but finally straightened out and began to rise slowly.

Monday I kept Diana apprised of what was going on when I could via the phone and told her to remain at work and not to come to Kansas City.... she showed up at the hospital about two hours later... . I was never so glad to see somebody I told to stay away in my life!

The doctors were unclear as to why this was happening... and worried. They were straight-forward about it... and we appreciated this. A hard to get rid of case of pneumonia?, graph versus host in the lungs?, a fungal growth?, something else or a combination of the above? No one knew for sure. A lung biopsy would be needed to help determine just what was going on.

Monday night Rachel held her own. Four of the Sisters from Assumption Catholic Parish/School in Topeka came up in the evening... we'd been joking about the groups of doctors hovering around the room during the day and I told our ICU nurse that the "gaggle of doctors" had been followed by a "flock of nuns" with the "prayer power" to match the medical power of the doctors.

I stayed in the ICU that night and Diana went home. She came back to Kansas City this morning and we once again spent the day together with Rachel. Preparations were made today by the medical staff for the biopsy on Wednesday. They kept us informed step by step of what was going on. Tonight one of the doctors, Dr. G----, came in and said that he was still pretty sure that things were not as fearful as we might think in the darkest corners of our minds. But he also talked with us about the distant possibility of tough decisions in the near future as well.

Diana and I put on those strong "parent faces" Monday and today in front of Rachel only to lose them away from her revealing two very pained souls. Rachel likes to be sung to at night and this evening before I left for Topeka I asked her if she'd like a song... she wanted Amazing Grace. "Uhhhhhh..... how about "Little Bunny Foofoo" instead? No, she wanted "Amazing Grace."

I was kneeling by her bed, rubbing her head (she's loved for us to rub her head since she was a baby). Diana was massaging her feet (another thing she likes). A nurse was on the other side of the bed. I started singing. First verse, no problem:

Amazing Grace, how sweet the sound
that saved a wretch like me.
I once was lost, but now I'm found,
was blind but now I see.

Second verse, again no problem:

'Twas Grace that taught my heart to fear
And Grace my fears relieved
How precious did that Grace appear
the hour I first believed. Third verse.... PROBLEM!!!:

Through many dangers, toils, and snares,
I have already come
'Tis grace hath brought me safe thus far,
and grace will lead me home

Got to the last line of the third verse; never sang it... I continued rubbing Rachel's head, but bent my head down below the bed where she couldn't see.... the nurse and Diana were already in tears... but Rachel had fallen asleep by then.
I drove home tonight with all that had occured within the past two days racing through my brain. I talked with the older kids when we got home.

I suppose it's the "calm, polite Anglican" in me that has prevented me from doing more than thanking you all for your prayers/well wishes at the end of each email in the past. I am not calm tonight.... though I'm still pretty polite.

I am asking, begging for prayers.... please.

This is our child. Her struggles have taught us so much about life, love and family. Her life has been on the line for months, but tonight we are confronted with losing her in a sudden, frightening way that has shaken us. We know that something is wrong and drastic measures may have to be taken. The medical staff is concerned and doing their best to figure out what's going on and how to deal with it.

These are "true" professionals too. They know their stuff but you also feel their concern. Nurses from 4-east came through during the day/evening in ICU, supporting us, praying for us, talking to Rachel.

Our prayer, and we ask that it be your prayer too, is for a clear picture for the medical staff from the biopsy (a clear picture means days of studying the samples), a "do-able" treatment, and healing. We would also ask that you pray for strength for Diana, Kenny, Amanda, Emily and me... strength of body, mind and spirit.

Kenny's commencement exercises (senior in high school) and Emily's graduation ceremony (final year, 8th grade) at Assumption School are this weekend. Amanda will spend Friday night with Rachel at ICU (depending on how things are going) so we can be in Topeka for Emily's ceremony that night.

It will be a week of life-changing events requiring great strength... swirling around a little girl who embodies courage and love... and who still changed her own Hickman catheter dressing pretty much all by herself on Monday... God-willing, Rachel will continue to teach us of life and love through the coming years.

Our blessings/prayers on each of you, your families, your friends.

Bill and Diana Sowers