Half Full

We managed to fit in two trips this summer; one to Blue Hill, Maine and the other to Lewes, Delaware.  Given the uncertainties in life as well as well as the penalty of non-refundable air travel, we could not have asked for more.  Clay caught his first fish (the only catch of the trip); saw the sunrise and the sunset one beautiful day on the beach,  climbed Blue Hill mountain, flew on an airplane, enjoyed a few weeks of camp with his best buddie, and learned to ride a boogie board.  He stayed out of the hospital and his counts stayed high.  A good summer, which we pray will lead to a good school year.  He started preschool last week, and while Grace switched schools this year and so is not with him, neither of them seem to be too upset about going it alone.  Here are the kids at our favorite wine bar in Lewes...more photos to come.

Stable

Clay had another MRI this week and the news is good -- all stable. This means that we will continue on the current protocol for another 3 months. At the clinic the news is that Kristin is getting married and will be relocating to the West coast. This is a worry for us.  Clay looks forward to doing ridiculous and funny things with Kristin each week, such as shooting balloons into the nurses station and making roosters (and loud noises) with surgical gloves.  Their laughter can be heard far and wide and most can't resist a smile watching the two of them.  Last week she was out during his appointment, and I said "maybe she is visiting her boyfriend." He did not want any part of that and said to me, "What?!? I am her boyfriend!"

Crablegs Clay

Last week I enjoyed a day in Annapolis with my mom and my cousin's family out on the Pirate ship.  Crablegs Clay and Gangplank Grant had a great time, as did Jackpot Jack and Greedy Grace. If you haven't gone out on the Pirate Ship I recommend it -- even the extremely hot day did not discourage the kids. Their favorite part was shooting down a stranded pirate we came across in the bay, and shouting pirate phrases like "shiver me timbers" and "AAARGH!"

Clay is feeling good these days.  Each day that he wakes us up with a smile and a request to get breakfast going I am thankful. 

Father's Day

 
Today I am thankful for fathers.  JD has spent the past 48 hours with Grace and Clay, taking Clay to his appointment, scouring yard sales early Saturday morning, going to the playground and the farmer's market, and of course refereeing battles and all the rest that comes with a weekend spent with two young children. And I was lying on a beautiful beach in Nantucket all the while, relaxing and rejuvenating.

So thank you JD, and thank you Peter,  the fathers-in-charge while Caroline and I enjoyed two of the most beautiful days of summer.

Clay is doing well and clinic visits have been uneventful. He finished out the school year, and is looking forward to some morning camp time with his friend Patrick. Today we catch our breath before camps start and summer gets into full swing.

Happy Father's Day.

June 4

It has been a busy week here with 3 days of appointments for Clay and 1 for Pearl. The MRI went smoothly, and by now Clay is used to the routine -- no eating that day, being put to sleep by blowing the large green balloon that smells like bubble gum, waking up and getting to eat a snack which he packs ahead of time.  The anaesthesiologist says Clay is the best patient he has ever seen.  Clay talks for days ahead of time about the bubble gum balloon. This all reminds me of Dr. Larch in John Irving's Cider House Rules, who looked forward to taking a hit of ether to help him get through each day.    It makes the sedation easy for us, but we are potentially creating an addict.

The MRI showed that the tumor is no longer showing the growth we were seeing during March and April.  While too early to tell definitively, they feel there may be some evidence that parts of the tumor appear to be dying off (necrosis).  Of course we were hoping for shrinkage, but the doctors say that would not happen this early into the protocol.  So for now the plan is to hold the course with weekly doses of vinblastine. The positive news for us all is how good Clay is feeling and his blood counts remain strong. 

On the puppy front, Pearl is now up to 16 pounds and is chewing everything like crazy (glad we did all that custom woodwork in the renovation!).  Grace is her best buddy and is enjoying having a wagging tail to come home to after school.

April 25

Clay had another very good week last week, and his blood counts were even stronger this past Friday. We anxiously upped the dose to 100%, but did not see any increase in side effects or headaches.  We are praying that his next MRI on June 1 will show shrinkage.

In anticipation of perhaps needing a plan B (or is it C at this point?), JD and I flew out to Houston, TX on Sunday to consult with Dr. Burzynski of the Burzynski Clinic. You can read about his approach here www.burzynskiclinic.com if you are interested in the specifics, but in-short, he has formulated a proprietary approach to targeting cancer cells with antineoplastons.  The drugs are currently offered only in Phase 2 clinical trials, and are not yet FDA approved.  Some patients have had total cures using his method, particularly for brain tumors.  So after two cab rides, two airplanes, and one night in nearby hotel, we met with "Dr. B" and some of his colleagues.  We had hoped to get more clarity on the efficacy of the protocol during these meetings, but exact data was not forthcoming. This, in addition to some controversy surrounding his approach, left us feeling frustrated with the meetings.  The protocol itself would not be an easy one for Clay.  The infusion is continuously administered, which would require Clay to wear a backpack to hold the drugs (for 1 year at least). We would need to be in Houston for several weeks while we all learn the routine; thereafter we would administer much of the treatment from home, with regular monitoring.  If the clinical trials end up with FDA approval we would move forward; at this point it feels much more like we would be taking a leap off a cliff.  Our greatest hope is that we will not have to make this decision now.

Now that Clay is in school he is being exposed to all sorts of new things.  He told me he has made a friend, "a girl in a yellow shirt who loves me."  The next update I get is the day of the fire drill -- where she tried to kiss him. "They told her no kissing in school, Mom!" Then today, he reported "she wore a green shirt today, not yellow, and she hugged me...but they told her no hugging in school EITHER!" Oh boy.

April 14

Last Thursday Clay was feeling pretty good, after another rough weekend.  At his appointment that day they discovered his white blood cells had decreased significantly (due to the chemo), so they cut his dose to 80%. Since we've been in this difficult period of headaches, potential hydrochephalus, and changing protocols, they did not want to skip the dose entirely.  Well, we had a GREAT week this past week. Unfortunely Clay couldn't go to school (too high a risk of infection with such low blood counts), but he felt great all week. What a relief! JD just returned from the clinic today, and Clay's blood counts are back to a healthy level, so we are trying a 90% dose and hoping things go as well this week as they did last week. We know so many people are praying for Clay, and we have to believe that all the prayers and all the love that surrounds Clay are helping to make this tumor shrink.