Here we go again…


IMG_1759Today we were able to take Allistaire out on a four-hour pass.  We left the hospital at 10am and Allistaire was already tired.  She kept asking to go to the playground.  We went to Ravenna park up the road.  Quite a number of times we would go to this park after church back in the day and I would nurse Allistaire as Sten and Solveig would go frolic on the playground.  How strange today to hold Allistaire’s hand as she so tentatively walked the distance to the playground.  She seemed excited about the slide but the journey up the stairs to the slide seemed monumental to her.  She wanted to hold my hand and took each step using me for support.  One trip down the slide and she was done.  However, she was quite content to have Grandpa Lowell, Sten and I push her on the swing for a long time.  I hadn’t really thought through what our time out of the hospital would be like, but I think unconsciously I had assumed taking Allistaire out of the hospital would be like having her old self back.  It was quite sobering to see how weak she was and to see her in contrast to the other kids at the park.IMG_1764 IMG_1762

After the park we went and walked through the Quad at the University of Washington where I went to under-grad and grad school – my home for five years.  The cherry trees were all nearly bloomed out.  It is such a beautiful and inspiring place.  Next we went to the Ballard Locks and enjoyed watching several boats go through the Locks – somehow always a delightful sight.  It was quite a cold morning, however, and Allistaire was pretty unhappy.  Allistaire requested chocolate milk and french fries for lunch so that’s what she got – that and a few cheeseburger sliders.  She ate pretty well, but was so tired from our outing that she fell asleep on the way back to the hospital.IMG_1785 IMG_1784 IMG_1788 IMG_1787

Once Allistaire had her IV antibiotic and was down for her nap, Sten came on over to the Ron Don and I packed up everything I’ll need for the week and cleaned the room in anticipation of room checks later in the week.  We finished up our time together walking the Burke Gilman trail for about an hour in the beautiful afternoon sun.  It is such a treasure to have such beauty so close and accessible.  We both had “Sunday Night Depression,” as we’ve always called it.  The reality that we would be apart once again and the unknown with Allistaire weighs heavy and sort of casts everything in a shade of sadness.IMG_1791

Tomorrow was supposed to be day 26 of her first round since relapse, rather it will be Day 1 of our next round of chemo.  Oh how we pray this Plerixafor, Cytarabine and Etoposide will do their jobs!  At 8am tomorrow morning IV Team will come and place a peripheral IV in Allistaire for her to receive the infusion of Plerixafor.  For some reason the study requires the drug go in through a separate line from where blood draws are taken which will be through her Hickman Line.  Though she will have a dose of Plerixafor each morning for five days, I was told that she will have to have the IV for just the first and last doses.  Each day she will also have a 1pm infusion of Cytarabine for one hour followed by a one hour infusion of Etoposide at 2pm.  This regimen will continue for five days, Monday 3/25 through Friday, 3/29.  In addition to praying for the Plerixafor to root out all those nasty cancer stem cells from her marrow and the chemo to meet the bad guys with sufficiently destructive powers, please pray for the protection of Allistaire’s organs and especially her heart.  It looks from her echocardiogram that she may have some damage since the last round of chemo.  Her ejection fraction has gone down by some degree.  Needless to say, we need all of her organs to remain as healthy as possible for whatever may come next.

This next picture is a bit of a hard one, but it shows our reality – the biopsy on Allistaire’s back and lots of pokes for bone marrow and intrathecal chemo.  But we won’t end there.  We’ll end with some smiles because that’s who we’re fighting for 🙂IMG_1744IMG_1758 IMG_1747 IMG_1725

5 responses »

  1. My mama heart breaks at the photo of her back. I praise the Lord for your little girl and for your faith and strength. Praying for healing and peace.

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