Thursday, April 29, 2010

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.

Friday, April 16, 2010

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 May."  So Kristin, this picture of Clay is for you -- a recent photo of his creation made at the Art Table.

Thursday, April 1, 2010

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.