Monday, December 20, 2010
Five
Clay turned 5 last week, and we celebrated with a party at the Zoo. The rain held off and the Pandas were both outside playing. Hindsight being what it is, we were very lucky that we celebrated early. On Wednesday Clay turned feverish and JD (again) headed with him to the ER. Two more days spent at the clinic on Thursday and Friday and Clay is again home and recuperating. The diagnosis this time was pneumonia and RSV. Seems his weakened state from the shunt surgery left him vulnerable to all the colds going around. This came after his first chemo visit in weeks where both of his doctors said he looked the best they had seen him in a long time, and they confirmed the stable status of the tumor. With Santa expected later this week and family and friends around, we are hopeful for a good few weeks keeping warm in front of the fireplace.
Tuesday, November 30, 2010
Blue Sky in a Rainy Day
Today was Clay's rescheduled MRI. The news is good--no growth in the tumor, and appropriately sized ventricles, which indicates the shunt is working properly. Clay's surgeon met us in the recovery room and said that she has not had a patient have such a hard time with recovery from a shunt implant as Clay, but all indications are that he is headed in the right direction. He is far too thin right now, but after he woke up from the MRI he started eating and barely stopped until bedtime. The MRI wing at Children's has been renovated and the ceilings in the recovery room now have stained glass inserts of a blue sky with puffy clouds and cherry blossom trees in bloom. A nice scene for Clay to wake up to, and for JD and me the first blue sky we have seen in some time.
Thursday, November 25, 2010
Thanksgiving
Thanksgiving morning
Clay: "Do you know how much I love you? As big as this country!"
For a brave little boy's love as big as this country we are truly thankful. We are also thankful for the family and friends who have dried our tears, made us laugh, helped shoulder our burdens and shared their hearts. God bless you all
jd
Clay: "Do you know how much I love you? As big as this country!"
For a brave little boy's love as big as this country we are truly thankful. We are also thankful for the family and friends who have dried our tears, made us laugh, helped shoulder our burdens and shared their hearts. God bless you all
jd
Friday, November 19, 2010
Clay is home and starting to feel better
(JD here for a rare guest posting.) As Mary explained Clay's brain fluid passageways became so obstructed that his cranial pressure increased to a dangerous level causing him excruciating pain and reflexive vomiting and coughing. The pain was so strong that tylenol with codine did not make him comfortable. Unfortunately there was no option other than to have a shunt surgically implanted in his brain to relieve the pressure and to allow his brain fluid to flow more easily. The shunt is a small plastic tube with a few valves that is inserted in the ventricles of his brain and then extended down his neck to his chest and then terminated in his stomach. The surgery was performed on Friday mid-day and was deemed a "success. No complications arose and a ct scan after the surgery showed the brain ventricles to be responding as expected.
But Clay's recovery has not been "textbook" as his body's readjustment to "normal" cranial pressure has been slow and torturous. His doctors now believe that Clay had been tolerating extreme cranial pressure for some time and only until last week when the pain became extreme did the problem truly manifest. It brings new meaning to the phrase "grin and bear it"---Clay has been in great discomfort for a good while but all you ever got from him was a grin and a "I'm fine" response. Clay's recovery process has been akin to a diver with the bends----the body is dealing with a sudden change in pressure and it causes the same symptoms that brought him to the hospital in the first place.
We brought Clay home from Childrens Hospital on Tuesday afternoon. Or as Clay told his surgeon on Tuesday morning: "we are busting out of this joint today!" At that point his symptoms had not really improved-----he was still experiencing severe pain and forceful vomiting but Mary and I felt strongly that the hospital was no longer the right place for Clay. The old joke about them waking you up every two hours to see if you are asleep is no joke.
On Thursday he turned a corner----he is eating and drinking without difficulty and the pain is only relegated to when he is upright. He is still largely confined to bed or couch but his (and our) energy and spirits are much higher. His doctors expect this trend to continue and for him to feel better than before once his body readjusts.
What we don't know is "why now?" Of course this problem is tumor related but we don't know yet if it is because the tumor "moved", grew larger or if his latest therapy is having some success in killing part of the tumor and the dead cells are causing a blockage.
Clay seems to have climbed out of this ditch but his path is still long and arduous. Thank you all for hanging in there with us and a special thanks to Rainette, Maria, Sharon and the Ambrozy's for helping our family get through this hellish two weeks.
But Clay's recovery has not been "textbook" as his body's readjustment to "normal" cranial pressure has been slow and torturous. His doctors now believe that Clay had been tolerating extreme cranial pressure for some time and only until last week when the pain became extreme did the problem truly manifest. It brings new meaning to the phrase "grin and bear it"---Clay has been in great discomfort for a good while but all you ever got from him was a grin and a "I'm fine" response. Clay's recovery process has been akin to a diver with the bends----the body is dealing with a sudden change in pressure and it causes the same symptoms that brought him to the hospital in the first place.
We brought Clay home from Childrens Hospital on Tuesday afternoon. Or as Clay told his surgeon on Tuesday morning: "we are busting out of this joint today!" At that point his symptoms had not really improved-----he was still experiencing severe pain and forceful vomiting but Mary and I felt strongly that the hospital was no longer the right place for Clay. The old joke about them waking you up every two hours to see if you are asleep is no joke.
On Thursday he turned a corner----he is eating and drinking without difficulty and the pain is only relegated to when he is upright. He is still largely confined to bed or couch but his (and our) energy and spirits are much higher. His doctors expect this trend to continue and for him to feel better than before once his body readjusts.
What we don't know is "why now?" Of course this problem is tumor related but we don't know yet if it is because the tumor "moved", grew larger or if his latest therapy is having some success in killing part of the tumor and the dead cells are causing a blockage.
Clay seems to have climbed out of this ditch but his path is still long and arduous. Thank you all for hanging in there with us and a special thanks to Rainette, Maria, Sharon and the Ambrozy's for helping our family get through this hellish two weeks.
Sunday, November 14, 2010
Sunday
Last weekend Clay started having bad headaches accompanied by vomiting. After two long days in the clinic getting IV fluids to stop dehydration and rule out any infection, we took him for a CT-scan. This showed further enlargement of his ventricles. JD took Clay to Children's hospital Friday for surgery to install a shunt. The surgery went well but the recovery is slow as the adjustment to normal pressure is causing nausea and pain. Please add Clay to your prayers tonight.
Friday, October 22, 2010
Oct 22
Today is our 16th anniversary and JD has taken a 5 a.m. flight to Boston to attend a conference on Pediatric Oncology. I just attended a friend's 40th birthday party which made me reminisce with JD about mine--a long weekend in Bermuda...just a few years ago, but in many ways a lifetime ago. Recently I came across this Native American saying "sorrow shared is halved and joy shared is doubled." That is the essence of marriage, and of good friends. Since I don't have any nice photos of JD and I, here are some happy Nantucket sheep.
We recently enjoyed a trip to Nantucket with the Hubbells -- a repeat for me -- and a treat for us all. The kids loved flying in a 9 seater plan from Boston over to Nantucket, and the weather was perfect. We attended the Cranberry festival which featured sheep shearing and cranberry bog flooding, we walked on beaches -- empty except for the seals-- the men fished one day (bluefish) and caught scallops the next. A wonderful memory to hold us over the winter months ahead.
Clay has caught a few bugs but otherwise is holding his own. He and I are quite a site each morning taking our naturopath-inspired potions, but they seem to be doing the trick. His next MRI is early in November. Please pray for positive results so he can stay on this protocol which he is tolerating well.
We recently enjoyed a trip to Nantucket with the Hubbells -- a repeat for me -- and a treat for us all. The kids loved flying in a 9 seater plan from Boston over to Nantucket, and the weather was perfect. We attended the Cranberry festival which featured sheep shearing and cranberry bog flooding, we walked on beaches -- empty except for the seals-- the men fished one day (bluefish) and caught scallops the next. A wonderful memory to hold us over the winter months ahead.
Clay has caught a few bugs but otherwise is holding his own. He and I are quite a site each morning taking our naturopath-inspired potions, but they seem to be doing the trick. His next MRI is early in November. Please pray for positive results so he can stay on this protocol which he is tolerating well.
Saturday, October 2, 2010
Gone Fishing
Unfortunately the photographer (me) did a lousy job of getting a photo of Clay with his 12" croaker fish, but I love the expression on his face after reeling in the big one.
Notable news on the home front is that I have left my position at The Washington Post. The .com division where I have worked for 8 years was "absorbed" into the newspaper, and most of my close colleagues have already departed. It was a great place to work and I am fortunate to have had the experience, but now I am looking forward to a break. One less ball in the air to juggle sounds good to me.
I have started working with a Naturopath doctor, and am eager to have the time to focus on alternative remedies. The doctor at the clinic this week reminded me that we are at week 25 of a 26 week protocol. That means we have gone to the clinic every week for 25 weeks.
Clay is feeling well and is enjoying the independence of going to school each day. He has charmed the teachers and he tells me he likes to just visit the nurse sometimes (and not because he is feeling badly!). Last weekend was Grace's 8th birthday, and both Grandmas came to celebrate. One morning at the breakfast table with JD, his mom, and Clay, Clay quietly says, "Daddy... are you just so happy because your mom is here?! " He is a special boy, well beyond his 4 years in so many ways.
Notable news on the home front is that I have left my position at The Washington Post. The .com division where I have worked for 8 years was "absorbed" into the newspaper, and most of my close colleagues have already departed. It was a great place to work and I am fortunate to have had the experience, but now I am looking forward to a break. One less ball in the air to juggle sounds good to me.
I have started working with a Naturopath doctor, and am eager to have the time to focus on alternative remedies. The doctor at the clinic this week reminded me that we are at week 25 of a 26 week protocol. That means we have gone to the clinic every week for 25 weeks.
Clay is feeling well and is enjoying the independence of going to school each day. He has charmed the teachers and he tells me he likes to just visit the nurse sometimes (and not because he is feeling badly!). Last weekend was Grace's 8th birthday, and both Grandmas came to celebrate. One morning at the breakfast table with JD, his mom, and Clay, Clay quietly says, "Daddy... are you just so happy because your mom is here?! " He is a special boy, well beyond his 4 years in so many ways.
Tuesday, September 14, 2010
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.
Friday, August 13, 2010
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!"
Monday, July 5, 2010
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.
Sunday, June 20, 2010
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.
Friday, June 4, 2010
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.
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.
Tuesday, May 25, 2010
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.
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.
Friday, May 14, 2010
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.
Friday, May 7, 2010
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).
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.
Monday, May 3, 2010
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.
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.
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 soon...in May." So Kristin, this picture of Clay is for you -- a recent photo of his creation made at the Art Table.
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.
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.
Wednesday, March 17, 2010
Happy St. Patrick's Day
As I sit here eating my green bagel at lunch, I am hoping for a bit of the luck of the Irish. The past few weeks have delivered us a one-two punch (if my boxing terminology is correct). In the midst of our mourning Bronnie, we got a less than positive report from Clay's last MRI. After several meetings with Clay's doctors to determine our protocol options, we have a decided to modify his chemotherapy with the addition of a third drug, gleevec. It is a relatively new drug that has great success with specific types of Leukemia, but the medical community has also seen some response with low grade brain tumors. We hope and pray it has a positive impact that will keep us from progressing to an entirely different protocol. Everyone admits that the current protocols are not targeted to low grade pediatric tumors. The next round of drugs that are more targeted to these types of tumors will not be ready for clinical trials for at least a few years. The race for a cure is critical. I am re-posting our link to the 5K on May 2 in DC so you can join our team!
http://www.braintumorcommunity.org/site/TR/Events/RFH-DC?fr_id=1490&pg=teamlist
On the pet front, Clay has a new goldfish in his room, named "Pancake." Grace, however, is holding out for a puppy. The search is on! Clay is looking forward to starting school after the Spring break. Actually, both kids are excited -- Grace is determined to walk Clay to his classroom each morning, and escort him upstairs to catch his ride home at noon. We are keeping our fingers crossed that he will stay strong and healthy enough to go.
Finally, thank you to whomever sent us the dinner from Whole Foods several weeks ago -- no card was enclosed but we thoroughly enjoyed it!
-- Mary
http://www.braintumorcommunity.org/site/TR/Events/RFH-DC?fr_id=1490&pg=teamlist
On the pet front, Clay has a new goldfish in his room, named "Pancake." Grace, however, is holding out for a puppy. The search is on! Clay is looking forward to starting school after the Spring break. Actually, both kids are excited -- Grace is determined to walk Clay to his classroom each morning, and escort him upstairs to catch his ride home at noon. We are keeping our fingers crossed that he will stay strong and healthy enough to go.
Finally, thank you to whomever sent us the dinner from Whole Foods several weeks ago -- no card was enclosed but we thoroughly enjoyed it!
-- Mary
Sunday, March 7, 2010
Join the Race for Hope - DC - 5K on May 2
Please consider sponsoring us, or even better -- running with us -- in the Race for Hope to find a cure for brain tumors. It is on Sunday, May 2 and begins at Freedom Plaza. Using the link below, scroll down to the "Teams Registered" and find us under "Team Derderian." Click "Join Team." This is a family event and there is a walk for kids at 10 am as well as the run. The race starts at 9 am -- very reasonable! If you can't be in DC - or are strictly a non-runner -- you can still participate as a "virtual runner." Click to Join team, and then follow the options to participate as a virtual runner. Here is the link:
http://www.braintumorcommunity.org/site/TR/Events/RFH-DC?fr_id=1490&pg=teamlist
Proceeds benefit National Brain Tumor Society and Accelerate Brain Cancer Cure.
Thank you in advance to anyone up for joining us in our efforts to fund research for finding a cure.
http://www.braintumorcommunity.org/site/TR/Events/RFH-DC?fr_id=1490&pg=teamlist
Proceeds benefit National Brain Tumor Society and Accelerate Brain Cancer Cure.
Thank you in advance to anyone up for joining us in our efforts to fund research for finding a cure.
Tuesday, February 16, 2010
Sweet Bronnie
We are terribly sad this week as our companion and friend of the past 11 1/2 years is gone. After several days of ups and downs in the ICU, Bronnie passed away on Saturday. Our home is too quiet, the space is too big (particularly the couch), and our hearts are filled with sadness. She was a constant companion to me, and my comfort in a world turned upside down. She was JD and my link to the past, to our lives before children and so many responsibilities. She made us laugh, she taught us to love, she was a best friend.
Wednesday, February 10, 2010
SNOW SNOW and more SNOW
Last Friday the schools closed and the snow began falling. We baked treats, enjoyed a nice fire, and shoveled lots of snow. Then our cable went out (phone, tv, internet...so much for the efficiency of having all your services with one provider). By Tuesday, schools were STILL closed and the second snow began falling. Now we are all going a bit crazy. Our backs are sore, and looking outside, you would never know we already shoveled 2 feet of snow, as 2 more seems to have fallen. The stores are out of eggs and milk, we are almost out of firewood, and the wind is blowing snow everywhere. Clay lost his boot in the snow and no amount of digging could unearth it. Grace created an "icicle castle" but has now turned her attention to videos (and learning to knit).
Our poor dog Bronnie is in the dog ICU as of last night. She had a bad reaction to some medication while at the vet -- luckily JD got her settled at the hospital before we got snowed in. But her absense is even more noticeable since we are all home, and we are used to her constant companionship. If we can get out of the house, tomorrow will be Clay's last treatment in this round, then another break till round 5 starts in March. Hope you are all keeping warm.
Our poor dog Bronnie is in the dog ICU as of last night. She had a bad reaction to some medication while at the vet -- luckily JD got her settled at the hospital before we got snowed in. But her absense is even more noticeable since we are all home, and we are used to her constant companionship. If we can get out of the house, tomorrow will be Clay's last treatment in this round, then another break till round 5 starts in March. Hope you are all keeping warm.
Saturday, January 30, 2010
Almost Halfway
Thursday was the 2nd of 4 appointments in 4 out of a total of 8 cycles, which means we are almost at the halfway point in Clay's chemo. We have 18 appointments left. The first one in this cycle was a difficult one, as seems to be the pattern, and Clay had a lot of aches and pains. This week they cut out the vencristin, and already we see a big difference in how he is feeling.
If you sent us a gift certificate to the Lebanese Market over the holidays, thank you! It came with no identifying information. Since it is Clay and my favorite place to eat lunch, we have enjoyed it thoroughly. Please identify yourself!
Blogging is very much a one-way street. When I started writing, it was the easiest way to reach out with news about Clay during a very difficult time. Now that our lives have settled into a "new normal" I am not sure what to do. Could you let me know if you would like to continue reading the blog -- by commenting, or by signing in? I know in the past it was difficult to leave comments, but I think I have fixed that so it should be easier.
What does all of this have to do with Elmo? Well Grace and I enjoyed a mother-daughter weekend in NYC recently, visiting our friend and Grace's godmother, Caroline. We packed a lot of NY experiences into 24 hours. Did you know that taxis now have tv playing in the back seat? I had to keep saying "Grace, look OUTSIDE the taxi!" But we did not expect to see Elmo and Cookie Monster hanging out in Rockefeller Center.
Finally, something to be thinking about as the snow continues to fall in Washington... JD and I are going to be recruiting a team for a 5K "Race for Hope" in May. Here is the link.
http://www.braintumorcommunity.org/site/PageServer?pagename=RFH_DC_HomePage
Please consider joining our team -- more information to come after the snow has melted and we can find our running shoes.
Finally, something to be thinking about as the snow continues to fall in Washington... JD and I are going to be recruiting a team for a 5K "Race for Hope" in May. Here is the link.
http://www.braintumorcommunity.org/site/PageServer?pagename=RFH_DC_HomePage
Please consider joining our team -- more information to come after the snow has melted and we can find our running shoes.
Saturday, January 16, 2010
Housecleaning
We are all enjoying the break from Clay's treatment these past few weeks, and wanted to do a bit of housecleaning -- primarily thanking all of our family and friends who have helped make the past year better than it would have been.
First, a huge thank you to those who have contributed to the PLGA foundation in memory of JD's dad. Several people have asked for the link to the site. It is:
www.fightplga.org.
We also wanted to thank the Thursday supper club families who have helped us out these past 9 months with wonderful meals each week. We know how much work it is getting a hot dinner on the table for your own family, let alone doing double work to provide another family's meal. Although I have intercepted a few folks at drop-off, mostly these have been silently left on the porch each week. Thank you Glenda for organizing this, and thank you to each of the families who have helped us make it through our clinic-Thursdays with a warm meal waiting at home. I am hoping I've included everyone:
Tanya Vichnevsky, Klings, Forsythes, Mathesons, Tombs, Ambrozys, Julia Forsyth, Pettys, Gillicks, Simons, Jacksons, Kellys, Harveys, Mandleurs, Egans, Lilleys, Hagertys.
Finally, a general thank you for the countless cards, gifts, baked goods, and other kindnesses over the holidays.
-- Mary
First, a huge thank you to those who have contributed to the PLGA foundation in memory of JD's dad. Several people have asked for the link to the site. It is:
www.fightplga.org.
We also wanted to thank the Thursday supper club families who have helped us out these past 9 months with wonderful meals each week. We know how much work it is getting a hot dinner on the table for your own family, let alone doing double work to provide another family's meal. Although I have intercepted a few folks at drop-off, mostly these have been silently left on the porch each week. Thank you Glenda for organizing this, and thank you to each of the families who have helped us make it through our clinic-Thursdays with a warm meal waiting at home. I am hoping I've included everyone:
Tanya Vichnevsky, Klings, Forsythes, Mathesons, Tombs, Ambrozys, Julia Forsyth, Pettys, Gillicks, Simons, Jacksons, Kellys, Harveys, Mandleurs, Egans, Lilleys, Hagertys.
Finally, a general thank you for the countless cards, gifts, baked goods, and other kindnesses over the holidays.
-- Mary
Sunday, January 3, 2010
2010
Clay had his last treatment in this cycle on Thursday, New Year's Eve. This round was a good one for Clay and this last treatment was no different- he has barely missed a beat since Thursday. Over the break we've enjoyed visiting with friends and family and even a few rounds on the ice rink with both kids.
Grace presented us with a story this morning that she wrote at night. I don't think I could summarize the past year, or the hopes for the future, any better than our 7 year old (my only edits are spelling)...
The Stormy Night, by Grace Derderian.
"Once upon a time there were a boy and a girl and there names were: Grace and Clay. They played with each other and they loved each other very much. One day when they were playing outside they saw a dark cloud. They ran inside and hid under the covers. They were really scared. When they pushed off the covers they heard thunder and they saw lightening. They went back under the covers. After the storm was over they went to a restaurant, it was called Pietanza. Grace ate spaghetti with red sauce and Clay ate pasta with butter and Parmesan cheese. The end."
Happy New Year to everyone.
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