Friday, June 26, 2009

Week 4

Clay is doing well -- he completed the last week of his preschool's camp and is enjoying our new swing set. This week's appointment showed no significant drops in his blood counts (this is a good thing). Overall, the clinic was a bit chaotic as more siblings seem to be along due to school being out. The many generous organizations we are learning about, such as Candlelighters, always have volunteers on hand giving out snacks, games, and stuffed animals. This week was no exception and Clay has added a large yellow chick to his growing collection. Our next two appointments will thankfully be shorter ones as he gets a break from the medicine that requires a 1 hr drip (and a 2 hr infusion of saline to buffer the impact). His patience for spending 6 hrs. in a doctor's office each week is waning.

I have been reading a good number of books lately searching for insight on how others faced with difficult situations have found faith and strength when their world has turned upside down. (There are rows and rows of these books in the Arlington library. Please let me know if you have a favorite.) The most helpful to me so far have been When Bad Things Happen to Good People written by Harold Kushner, a Jewish rabbi whose son was diagnosed at 3 with a disease with no cure. Also, Learning from the Heart, by Daniel Gottlieb, who became a quadriplegic at 33. In a chapter called Children's Dreams and Parent's Faith, he quotes Kahlil Gibran from The Prophet. I think this is a beautiful poem for any parent.
Your children are not your children.

They are the sons and daughters of Life's longing for itself.

They come through you but not from you,

And though they are with you yet they belong not to you.

You may give them your love but not your thoughts,

For they have their own thoughts.

You may house their bodies, but not their souls,

For their souls dwell in the house of tomorrow, which you cannot visit, not even in your dreams

Friday, June 19, 2009

Week 3

We are getting into a routine now on the "appointment day" as Clay calls it. J.D. took him for the first shift -- the hardest part -- in this week's visit. The numbing cream and the familiarity of the routine seem to be helping Clay's anxiety. His blood levels were fine. The Doctor kept the dose at half for one of the medicines, as last week went well with few side effects. Three hours into it, Grace and I arrived. Grace was so excited to be joining Clay she put out her clothes the night before (after we said she couldn't sleep in them). She spent quite some time packing her bag...this girl likes to be prepared. She packed a 500 page book (The Secret Garden), a video (Charlotte's Web), a baby doll (Holly), and some snacks. Of course she did not touch anything in her bag during the actual visit, but instead went straight to the art table to make necklaces. ("Grace, can you say hello to Clay first?!?")

Thanks for the Thursday dinner club for 2 dinners (small schedule mix-up) last night! Something good for everyone. -- Mary

Sunday, June 14, 2009

Week 2

Thursday's appointment only took 5 1/2 hours...progress! (ha ha). J.D. and I have learned it is best for us both to be there for the first part, when we review Clay's blood counts and meet with the doctor to discuss the plan for the week and ask our questions. It is also the most stressful for Clay since they have to "access his port" which is more frightening than painful, but somehow seems better with both parents nearby. (He did tell me very seriously when we were discussing the upcoming visit "Today I am going to smack someone..." to which I did not know how to respond since it sounded like a good idea to me.)

This week the doctor decided to halve the dose of one of the chemo medicines, since last week Clay had some pain overall and in his jaw in particular. We see the impact of this already -- on Saturday Clay rebounded well and overall had a really good day. Today he is his happy self.

Last week the doctor seeing us said "welcome to medical school" and she was not kidding. To think only 2 months ago we were clueless to much of our current conversation and focus. Blood work means watching about 20 items to see what negative impact the drugs are having on white blood cells,red blood cells, platelets, etc. So far not too much decline, and in fact he gained a half pound last week.

Thanks to my good friend Maria for joining us for several hours on Thursday and brightening up the visit for both Clay and me. Also to the Jackson's, for the Cars flip flops for Clay and the ravioli dinner. And the Gillick's, for the bringing us several more meals this week and likely contributing to Clay's weight gain as he loved the meatballs.

Wednesday, June 10, 2009


Yesterday J.D. dropped into Grace's school during her classroom's "Sri Lanka day" party (...why learn Spanish when you can learn Senegalese?). Grace's teacher talked him into staying for lunch, so he sat at a small table with Grace and her friends. To liven up the conversation, he asked Grace's friends what was the most unique thing about her. They unanimously said "her laugh!!!" Anyone who has heard Grace laugh full throttle with her head thrown back knows what a joy it is. Being surrounded by this laughter is giving us all strength...Ayubowan! (may you live long!)

Monday, June 8, 2009

Week 1

Thursday was a long day -- 7 hrs in the falls church location. Testing blood, meeting with the doctor, three hours hooked up to the IV. They have an art table and seats with tvs and videos, but it is a very long time to expect a 3 year old, even one as good-natured as Clay, to be ok. Thankfully my mom and JD joined me for shifts -- none of us expected a 7 hr visit. Friday was also a long day as Clay didn't feel well. The anti-nausea medicine seemed to work, but he was uncomfortable with aches. Saturday he rebounded and seems to be feeling ok except for jaw pain, which is one of the side effects. A special thanks to Grace's former teacher Tatijana for an awesome fajita dinner, complete with beers for the grown ups.