Week 8

Last Saturday (which happened to be my birthday) we visited with good friends at their beautiful home on the Eastern shore. Ellie, a true princess and lover of a good party, wished me "happy birthday" at the top of each hour. Grace asked, "are you as old as grandma now?" Using my ever-increasing wisdom, I ignored her. We all enjoyed a beautiful, relaxing day.

Another long visit at the clinic on Thursday, again spent in "solitary confinement" as Clay has a bad cough. Six hours of watching videos and sitting in a reclining chair makes for a long day, almost like being on a long flight, except we aren't going anywhere. Two more appointments in this round to go.

Neighborhood warning: JD has another mulch delivery outside our house. Grace's sign should keep all drivers not focused on the road (Betsy?) safe.

Week 7

Thursday's appointment was another long one, broken up only by a fire alarm, which required everyone to vacate the building. Thankfully it was not a long ordeal, and seeing the firetruck is always a thrill for Clay. Clay's blood levels are good and the doctor is very pleased with what she perceives to be fairly minor side effects. The biggest stress of the appointment has become the tape /bandage removal after the infusion is done. The needle stick is now fairly minor, but taking the tape off is scream-city with all bets off -- major kicking and the works. If anyone has tips for how to get sticky stuff off, please share them.

While Grace accompanied us for a few hours of this visit, the clinic has signs all around discouraging friends and siblings from coming. They are calling this summer the "blizzard in July" of swine flu. JD, Grace and I each did 10 days on tamiflu -- one nurse told me "...we take them like tic tacs around here." Grace made a poster with 4 stethoscopes to represent the 4 visits left, and when we got home Clay gladly scribbled one out...3 to go before a break.

Change of Scene

After spending too many hours in exam room #10 this week, we decided we all needed a change of scenery. So, on Saturday, we took an overnight to Baltimore to have some fun and hit the aquarium. We stayed at a Hilton Garden Inn in "Harbor East" which is on the recently gentrified side of the Inner Harbor. With a Whole Foods to the left of us and a Starbucks to the right of us, J.D. noticed, "we've arrived in Clarendon!" We rode the water taxi to dinner in Fells Point and back again, after stopping for a new hat for Clay. We let the kids stay up way too late watching an Adam Sandler movie in bed, we saw the Dolphin show, we saw sharks and wonderful birds in the Rain forest, we ate lunch in Little Italy. Monday -- we are exhausted -- but it was worth it.

Some Week

Just when we thought things were going well...Clay developed a fever on Sunday night which required a visit to the E.R. After 6 hours of antibiotics, hydration, and endless tests, we were sent home. Since our new goal in life is to not spend overnights in a hospital, this made us all very happy. On Monday, back to the clinic for a second dose of I.V. antibiotics and several hours of I.V. hydration. This more than anything perked Clay up as he was dehydrated from not eating/drinking. He is doing fine now and seems to have rebounded. Our great friends the Ambrozy's took Grace for these 24 hours and for her it was like going to Disneyland -- a sleepover with her friend, camp, swimming and dinner at the club.

Halfway to 10

Thursday was the 5th visit, the halfway point in the 10 "induction" rounds that Clay has to get through before the next MRI and a break from chemo. J.D. took Clay for this visit and it was the new record for speedy -- only 3 hours. To think we would ever be thankful for "only" a 3 hour doctor appoint and "only" one chemo drug...now I know what resilient and adaptable means. With no carboplatin given during this visit, Clay had no nausea and therefore we get a break from giving him Zofran, the anti-nausea medicine.

I had a telephone consult with a Naturopath from Oregon last week, and we now have a stocked cabinet of homeopathic solutions and vitamins. There truly seems to be a connection between vitamins, diet, and cancer-activity within cells. And, these supplements should help combat the side-effects of chemotherapy and strengthen Clay's immune system. However, the challenge is clear: trying to get a 3 year old to take a mushroom and fish oil supplement is no easy task. Especially a child like Clay that likes to keep his foods very plain and can't be swayed by ice-cream or most kid favorites. For those interested, Beating Cancer with Nutrition is a great resource for information and recipes, and will inspire even the healthy to make better food choices. Thank you to Patti Kelly for giving me so many contacts in the alternative-medicine world.

Finally, thank you for a wonderful meal last night Glenda. You have been so generous in time and energy in organizing the Thursday dinners and in checking in to see how you can help.

Happy 4th of July.

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.

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