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.   

Welcome Pearl

As promised, here are some puppy photos of Pearl.

Grace and I picked Pearl up at the airport last week, at United's Cargo terminal.  Grace asked me, "Mom why are we here with all these truck drivers?"  Picture Grace holding the empty pink collar and leash she had selected for Pearl (see photo).

From snowy Colorado to 90 degrees in Arlington, Pearl has adjusted quickly to life in the Derderian household.  The breeder asked me "do you want a male or female?"  I told her I did not care at all, but I wanted the one with the 'mellowest positive energy' (Thank you Cesar of "Dog Whisperer fame for that advice).  We we may actually have gotten what we ordered as she seems to be a fairly reasonable, calm terrier...almost unheard of!  JD seems to be the most smitten, which is fortunate because once again he has the early shift (which includes, of course, Clay). 

Does anyone remember the crazy bird in the movie "Up"? You may walk by and hear that sound emanating from our home as the kids have fallen in love with saying "ACK!" to anything Pearl does that they don't deem acceptable.  Why is it kids know perfectly well how to enforce the rules but rarely to follow them?  On that note, Happy Mother's Day to all. Stop by (with a treat) to say hello to Pearl.

Team Derderian

We had a great group to run the 5K on Sunday -- over 30 runners, and 90 supporters in total for Team Derderian!  10,000 runners in all!  It was a hot sweaty race and wonderful to relax afterwards and have a chance to catch up with everyone in JD's office overlooking Freedom Plaza. Thanks to those who came from near and far -- Rhode Island, Pennsylvania, the Eastern Shore.  Thanks to all our family and friends for making the effort to make this day a success and bring us one step closer to finding a cure for Clay and the many others suffering from brain tumors. 

April 28

Updates are difficult to write these days as we keep waiting for good news that continues to elude us. Clay is continuing to have bad headaches and we are in a wait-and-see mode, trying to avoid shunt surgery which would drain the fluid build up in his ventricles.  Waiting for the new chemo to work (we are 3 weeks in).  Waiting has never been easy for me in the best of times.  But waiting for your child to stop crying from pain is unbearable and is taking its toll on us all.   The other weekend Clay said to me "I wish we were frogs, then our heads would not hurt so much."

We now have over 25 team members running this Sunday, and many more who are on the team as supporters in funding to find a cure for brain tumors.  For those running, we look forward to seeing you at JD's office before the run for a quick hello and packet pick up.  The overwhelming support we have received is a bright spot in our lives, so thank you again. 

Grace and I are going to the airport today to pick up a new family member -- an 11 week old Kerry Blue Terrier.  Her name is going to be Pearl.  Cute puppy photos to come.

April 16

Thank you to all of you who have donated funds or are joining us in the Race for Hope on May 2.  There are over 440 teams signed up so far, and the event has raised over $1 million to date. JD and I are reminded through events like this how lucky we are to have such support among our family and friends.  There is still time to sign up to join us -- online registration runs till April 25th.  

After 1 more visit to the ER and seemingly endless talks with doctors, other parents, and hours of late night reading, we have settled on new a protocol which Clay started yesterday.  The good news is that this type of chemo does not require a 3 hour infusion over an IV drip, so we are now in the "express lane" for weekly appointment that should take about 2 hours instead of the 5 hours we have been committed to for the past year.  The side-effects should be minimal, with low blood counts being the one to follow most closely.  Our biggest concern remains the headaches Clay is still getting and we pray these will soon subside.

Clay started school last week and so far so good. He is a social guy, and is loving the interaction with teachers and his peers.  One person missing from his life these days is a favorite nurse, Kristin.  She is taking a break from the clinic by volunteering her services on the Mercy Ship, currently docked in Togo, Africa.  Every week we hear "Kristin will be back soon...in May."  So Kristin, this picture of Clay is for you -- a recent photo of his creation made at the Art Table.

April 1

So much for Gleevec.  I won't go into all the details, but we ended up in the ER last Friday morning with Clay, after a very long Thursday night with him feeling terrible. A CT scan showed he had an elevated intercranial pressure.  But, after several hours hooked up to an IV, an opthamology exam, and an MRI, things looked much better and the swelling had decreased somewhat.  They admitted us for observation overnight to the PICU (Pediatric Intensive Care Unit).  Unfortunately it was a busy day and the only bed left was in a room with 3 other patients.  For those of you lucky enough not to have first hand experience with the ICU, here is the thing: there is no sleeping in the ICU.  The lights do not get turned off, ever.  They monitor your vitals every few hours. And there are lots of noises -- patients, machines beeping, visitors talking, doctors and nurses doing rounds,  tv's blaring.  Clay said to me every hour or so, "It is morning?"  to which I would say, "no, the lights are just still on. It is 2 a.m (3 a.m., 4 a.m., you get the picture).   We were overjoyed when we were discharged 24 hours later.  And the headaches have subsided this past week and Clay is back to his happy self.  So we are again meeting with our doctors and deciding on new next steps.  But we are home and that is wonderful.