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Wednesday, December 28, 2005 7:02 PM CST

Happy Holidays!

We just returned from Boston for Andrew's 3 month scans and received the good news that everything is all clear. That means NED! What great news for a happy New Year!

We had a wonderful Christmas, spent with lots of family, but also lots of traveling. The boys got to see all their cousins and had a great time. Tuesday we went to Boston to visit the Museum of Science, again, and see the Star Wars exhibit. We spent the night at the Holiday Inn so we could be there early for Drew's test. All went very smooth today, and of course we are thrilled with the good test results.

Our busy vacation week contiunes with a long awaited visit from our friend Brittney from Camp Sunshine, and then we will spend a peaceful New Years' at home with some friends.

Peace, happiness and good health to you all in 2006-
with hope,
Nicole

Monday, September 19, 2005 11:59 AM CDT

Last week was a very successful week!

On September 12th, Drew had his 3 month check-up at Dana Farber. He had a Ct scan, MRI, and an echocardiogram. All results came back clear, and so we continue to be NED! Could not ask for better. We will return to Boston on December 28th.

On Sunday, September 18th, we all participated in the Wipeout Walkathon to support the Tommy Fund at Yale New Haven Hospital. With the generous support of many people, we raised just over $1,000! WOW! Thank you to all who contributed. The above photo shows Andrew holding a butterfly during the opening ceremony. Butterflies were purchased and released in honor of all those who have battled childhood cancer. We all walked 3 miles along the Long Island Sound on a beautful sunny day! It was a great event for a truly great cause.

The school year is off to a great start! Andrew is really enjoying Kindergarten, and Tyler is doing well in Third grade. Andrew scored 2 goals at his soccer game on Saturday!!! Coach Bill is doing a great job!

Best wishes to all for a beautiful Fall, a Happy Halloween, and wonderful Holiday Season!

with continued hope,
Nicole

Thursday, August 25, 2005 9:08 PM CDT

Wow it has been awhile..that's good! Summer has kept us very busy! Andrew is doing awesome! Unfortunately the curls are gone, but I still like the photo! We start school next week, and Andrew is going to Kindergarten - he can't wait! Our next scans are set for September 12th in Boston. So check back then for results.

September is Childhood Cancer Awareness month! And while many events happen nationwide during September to support various pediatric cancer efforts, the Cordes Family will be walking in the “5th Annual WipeOut Walkathon ‘05” which supports The Tommy Fund at Yale New Haven Children’s Hospital. This 3-mile walk will be taking place on Sunday, September 18th at the Niantic Bay Overlook in Connecticut. Yale New Haven Children’s Hospital treats more children with cancer than any other facility in our state. Please consider sponsoring us in this walk so we may help future families cope with a childhood cancer diagnosis.

I am proud to announce that August 1st was Andrew’s one year anniversary since we have seen the inside of Yale New Haven Hospital as a patient! However, during Andrew’s 7 months of treatment in 2004, the Tommy Fund gave us much support, and we are hoping to give back in any way we can.

Please make your check payable to “The Tommy Fund” and mail it to us so it is received by September 15th. Any amount will be greatly appreciated and put to good use! To learn more about the Tommy Fund and this event, visit www.tommyfund.org.

Checks can be mailed to The Cordes Family, 31 Copper Penny Lane, Shelton, CT 06484.

We also plan to run a Team in the Shelton Relay for Life, which will be June, 2006.

thanks for all your support & prayers,
with hope,
Nicole

Saturday, May 28, 2005 8:47 PM CDT

I am pleased to report that Andrew received another good report on his 3-month scans Wednesday. We are still NED! We spent the day in Boston for a CT scan, MRI, and consult with the Doctor. Technology is amazing! The Doctor was able to pull up the actual pictures that were taken just hours ago. Bill and I got to see more than we really needed to, but the report was good, No Evidence of Disease.

Andrew was a trooper as usual, first attempt at the IV was unsuccessful, so there was a bit of crying, and in Drew's words..."I hated that!" But second attempt went fine, and he is really so good about it, he yells, but doesn't fight us. And then there is always the waking up from the drugs. Our five year old is very 'drunk' and eats like he hasn't seen food in days. So, at least we can smile about the silly stuff, and be at ease for 3 more months.

When Drew first awoke from his sedation, we began talking about Yankees vs. Red Sox - a common them in Boston. His nurse, a Yankee fan, (not very common there) asked who Drew's favorite Red Sox player was, since he claims to still be a Red Sox Fan, his answer...

"Derek Rodriguez" !!!


It seems like my last update was so long ago, I guess a good sign that these tests don't seem to creep up so fast anymore. But we had a very busy 3 months. There was our trip to Camp Sunshine in February, then both boys had birthdays in April. Tyler had his first sleepover - yes I am crazy, but it all went well. We went on Drew's make-a-wish trip in April to Give Kids the World village in Kissimmee Florida! It was a wonderful experience. The generosity was unbelievable. We did Disnsy, and Universal, (4 days at parks) and the village was lots of fun too. Drew celebrated turning 5, and had a fun party with his classmates and cousins when we returned from Florida.

So now we are just getting ready to finish up the school year. Drew has nursery school graduation on June 3rd & can't wait for the start of Kindergarten. Tyler finishes up at the end of June, and will be happily moving on to 3rd grade. The boys have both managed to make some great friends with people I know will be our friends for a lifetime. They are both playing soccer, with Dad as a coach! Tyler has become more involved with Karate (if that is possible) and doing very well. I am looking forward to a calm, uneventful summer (as compared to last year). The boys will both be doing a baseball camp, and otherwise just enjoying summer -if it ever arrives.

Happy Summer - and may God continue to bless us all with good health & happiness.

with continued hope,
Nicole

Thursday, February 24, 2005 11:55 AM CST

Hello All -
We are here at Camp Sunshine in Maine. The boys are having a blast so far. The sun is shining, but it is pretty cold. They are even making Bill & I do "Super Duper Blooper Games"! Stories for another day!

Anyway, Drew did great for his scans, and we got the word that everything is "ALL CLEAR". So we are still in the NED status (No Evidence of Disease). So that is great news, and we are good until May.

So, that's all for now, enjoy your week.

Stayed tuned for info on our Relay For Life Team, and fundraising efforts. Event will take place in June in Shelton!

with continued hope,
Nicole

Thursday, February 10, 2005 3:26 PM CST

Wow how the time flies when all is well. I can not believe it is February. The boys had a wonderful Christmas and we have all been as busy as ever. They just finished up swimming lessons, and their Indian Guide tribe has brought them on some interesting adventures in the last month. In January they went to a hockey game and slept over night at the Hartford Civis Center. And last weekend they went to the Mystic Aquarium and slept over with the sting rays. That was after an exciting evening that included the dissection of a squid!

One more week of school then we have Winter Recess. We will be heading to Boston for Andrew's 3 month tests. This is scheduled for Tuesday, February 22nd. We will spend the night in Boston and then we are heading to Maine to attend Camp Sunshine, which is a special camp for children with cancer. This free camp is filled with sledding, skating skiing, and lots of special activites for the kids and parents. We are really looking forward to it.

When we return, I hope to update this page with good news about Andrew's tests! He is doing great, and he even has curly hair now - it is kind of wild!

So, best to all, and look for an update the week of March 1st!

with hope,
Nicole

Monday, December 6, 2004 1:36 PM CST

Tis the season....

We hope everyone had a wonderful Thanksgiving and that you are now enjoying your preparations for this holiday season. We had a peaceful Thanksgiving at home with Papa & Aunt Bina and Grandpa & Wawa, and of course we were all thankful to be together.

On Monday, the 29th, Bill & I traveled up to Boston with Drew for his MRI & CT scan. It was a long day, but by the time we had arrived home, the doctor had left a message that the results came back fine with no changes! That means NED - or No Evidence of Disease! This is the best classification Drew can get. So we are so happy to be able to enjoy the holidays with a clean bill of health.

Things are crazy as usual around here! Soccer has ended, and the boys both got their trophies - Drew was of course all smiles - his first trophy! He is so full of energy (most of the time) and just doing great all around. He loves school and is still doing baseball. Next week the boys will start swimming lessons too! Drew got his first "haircut" in 9 months - well just a little trim! (See new photo in album) He is looking so cute with all his hair.

Yesterday, Drew got to ride on the Candy Cane Express with Dr. Joe, and Santa came through for a visit and even gave out presents! Drew was all smiles! (as seen above!)

So may you all keep on smiling through this joyous time of year - and remember all that you have to be thankful for!

with love and continued hope,
Nicole

Tuesday, October 26, 2004 2:03 PM CDT

Saturday 10/30:
Drew's doing great! We arrived in Boston on Thursday night for an early morning trip to Children's Hospital on Friday. Drew was very comfortable and didn't seem concerned at all. There was a boy across from him in Pre-Op that was crying and carrying on; so Drew looked up from his electronic Pixter pad that he was playing with and said "it must be his first time" and went back to playing. The surgery lasted about an hour and he woke up happy. Nicole said that when they put him under (with a mask) it was the only time he looked a little anxious. We left shortly after he woke up in recovery and made it home in time to go to the fall festival at Tyler's school. Besides some minor pain from the incision Drew felt fine and had a good time at the event. He even played soccer this morning. His surgeon gave him a little extra dressing and bandages just so he could. This marks a milestone for Drew and he handled it the same way he's faced all the other challenges in his life... with strength and optimism, a lesson for us all.

Tuesday 10/26:
After a month plus of school, soccer games, and a vacation at Disney, it is now time for Drew to return (briefly) to the world of hospital rooms and Doctors. This time it is on a positive note. After getting the all clear on the last set of scans with No Evidence of Disease (NED), the time has come to remove the port that Drew had placed in his chest for the administration of the Chemo drugs.

So, on Friday morning Drew's surgeon in Boston (an amazingly talented and compassionate person) will operate to remove the port. This is billed as a simple procedure with a quick recovery. It is done on an outpatient basis and Drew should be home Friday afternoon.

I'm a little desensitized, but still not immune to the anxiety of having your child operated on, no matter how routine. I was commiserating with a friend today about our first experience with having a child taken into the OR, that was when Tyler’s ear tubes were put in, and then having to wait to hear that everything went fine. Well for Drew this is going to be surgery number five, and God willing his last.

I’ll ask once more that you keep Drew in your prayers as our little trooper endures a little more modern medicine.

With love and hope,

Bill

Friday, September 17, 2004 11:41 AM CDT

Andrew is NED!

Drew had his first set of scans since finishing treatment on Monday. Tuesday we met with his doctors in Boston, and they informed us that all of his scans were normal. He had a Chest CT to see the lungs, and an MRI of his neck. These are the same 2 tests we have been doing for 2 years, and they will continue every 3 months for the next 2 years. If he remains NED (No Evidence of Disease), they will go to every 6 months. Drew also had an echocardiogram, which is an ultrasound of the heart. This also showed normal function.

So, all around GREAT NEWS! We are now waiting to schedule the removal of Drew’s port. This is a surgical procedure, but a quick out-patient surgery. We will also go to Boston for this to use the same surgeon that put it in.

So now we have 3 months to be normal…and we are certainly trying to do so. Tyler started school back on August 31st, and is doing great in 2nd grade. He is playing soccer (with Dad as his assistant coach) and still doing Karate. Drew had his “meet the teacher” day at nursery school last Friday. He has Mrs. Perrone, and she seems great! Unfortunately he missed the first day of school on Monday because of his tests, but he went Wednesday, and jumped right in to all the fun! Drew has also started playing soccer, which is the cutest thing. He spends more time talking than playing, but he is having fun! He is also starting a baseball clinic next week!

And of course best of all…we are going to Disney World! After canceling 2 trips in the past 6 months, we are finally going in October! (let’s hope the hurricanes go away!)

Physically, Drew is doing wonderful. He is growing and gaining weight, and eating like a champ! We are just starting to see some fuzz growing on his head, so maybe by the holiday photo he will have a little hair! He certainly is worn out by the end of each day, and the doctors have said it will be a year before his body is completely recovered from the chemo. He is still more susceptible to infections because his immune system is weakened, but nothing that requires any extreme precautions.

So, while we certainly have a long list of potential side effects that could occur throughout his lifetime, he is moving on and not letting a little chemo or radiation stop him from having fun! It has been a long 7 months and we continue to be very grateful for all the help and support we received from so many people.

And now I will try to remember what normal is for me. As we move forward towards the holidays I hope everyone continues to make time to enjoy even the simple things. While we certainly try to maintain a “normal” lifestyle for the boys, we will of course be reminded of this aspect of our lives every 3 months. Our next visit for scans will be right after Thanksgiving. Until then we will just have monthly check-ups, and of course surgery to remove the port (that is a good thing!)

We will periodically be updating this site so feel free to leave a message here or to send one to us at home. Thanks again for all the love & prayers.
September is Childhood Cancer Awareness Month. Thanks for being aware!

With much hope,
Nicole

Wednesday, August 18, 2004 2:52 PM CDT

Here we are counting down the days till school...

Drew is doing very well. His white count is still a little low, but he is feeling great and full of energy. We get next week off from the doctor, and will return on September 1st. He will need to have his port accessed, and then once a month until it is removed.

We have had a busy few weeks trying to enjoy the last of summer. We went to Lake Compounce last week (a local amusement park) and Drew & Tyler both proved to be daredevils like their Mom & Dad! Drew went on the big log flume and river raft ride (me & him got soaked!). And Tyler rode his first full size roller coaster - Boulder Dash! A very fast ride! He was petrified, but said he will do it again next year!

We have been enjoying the company of many friends as we try to catch up with everyone. The boys had 2 friends sleep over last night - Drew was the last one asleep! And we are headed to LI soon for a nice visit with cousins!

I am looking forward to a completely unplanned week next week (no doctors appointments, no schedule, and everything is ready for school)! Tyler starts on August 31st, and Drew will start in mid-September.

So, we are having lots of fun, and Drew is doing great. We are certainly trying to get back into some kind of normal. School will help us with that!

Thanks again to all our friends and family who have taken time to visit with us and help us make some lasting memories! Despite our crazy schedule over the last 6 months, both Tyler & Drew have had many wonderful adventures that we can only hope is all they remember in the years to come!

with love & hope,
Nicole

Tuesday, August 10, 2004 3:33 PM CDT

Drew is getting back to normal now. He still has a little cough but otherwise he feels fine... at least that's what he told me, "Daddy my throat doesn't even hurt anymore." The down side of what apparently was more of a cold than mouth sores is that his blood counts came back low again today. No cause for concern, but he'll need to go back to the Oncologist next week again. I'm sure Nicole's getting tired of the trip by now. Once he gets a clean bill of health from this last round of chemo the appointments will go to only once monthly.

So Drew's hair fell out rather quickly once it started. There wasn't much there to begin with but he didn't go as long with the patchy look as he did the first time. With no more chemo hopefully it'll be back soon. He doesn't care a bit. Tyler can't seem to stop pointing it out though. Not in a mean way, just repetitively... "you're bald", "you really have no hair on your head", "it's totally gone", etc.

We had a boy's night on Saturday camping in the backyard. We roasted marshmallows and slept in the tent. It was a cool night so Drew probably should have had a knit hat on to keep him warm. But he was snuggled in between Tyler and me in his sleeping bag and said he was warm.

Thanks for all of your thoughts and prayers! God willing, all of these treatments have done the trick!

With hope,

Bill

Sunday, August 1, 2004 1:34 PM CDT

Drew is HOME! His ANC came up to 660 today, so they discharged him from the hospital this morning. He is still a little mushy and his throat is hurting a bit. We are just giving him Tylenol, and as his white count continues to rise his throat will get better too.

So, we have to have counts checked on Tuesday, and probably once a week for the rest of the summer, but otherwise, we are DONE! We hope to not see the the inside of Yale for a long while.

Drew will have his MRI and CT scan in 6 weeks in Boston. For now we just hope to enjoy the next month doing fun summer stuff.

with hope,
Nicole

Thursday, July 29, 2004 7:53 AM CDT

7/30 Update:
Drew was admitted back into Yale yesterday after his doctor's appointment where he had a low grade fever. No real change in how he feels besides being a little more moody. Minimum time in is 48 hours after his fever is gone and they don't find any infection in his blood cultures.

Bill

7/29:
Since the last post after Drew's Oncologist appointment on Tuesday, he started not feeling very well.

He was throwing up Tuesday night into Wednesday morning. He has some mouth sores and just doesn't feel well. He's also flirting with a fever. This is "normal" after his week of chemo.

He ate a little yesterday, after not wanting to on Tuesday. He's mostly having ice pops which help the mouth sores along with water to keep him hydrated. Poor guy just lays on the couch and wants to hold someone's hand all day. Hopefully he can keep doing that at home until he feels better, and not in the hospital.

Nicole's taking him to the Doctor this morning for his appointment so we'll see if he has a fever or not when he gets there.

It has been raining so Tyler is not only stuck at home but stuck inside as well. He really has been very understanding and is showing a lot of compassion for his brother. If we could just get him to stop bouncing off all the furniture.

Andrew's almost through this but it can't go quick enough for us.

With hope,

Bill

Monday, July 26, 2004 11:36 AM CDT

Drew did get discharged from Yale on Saturday morning! He told me it was his "best day ever!"

We had a quiet weekend at home, and today we went to the doctor, and as expected his ANC (remember that magic number that is supposed to be over 500) was 225. This means he is neutropenic, and fever puts us back in the hospital. We had a rough ride to the doctor this morning, as Drew told me he needed to throw up as we were driving on 95 - but he made it to the office, we got some anti-nausea medicine in him, and he perked right up. He is doing fine now, but of course I am just waiting for that fever.

We will have a quiet week, and I hope to avoid New Haven (especially on Wednesday when IKEA opens), and we will visit the doctor again on Thursday to check counts. For now we will continue with his nightly shots to help boost those white blood cells. By the weekend he should be back to normal, and we can enjoy the last 5 weeks of summer.

with hope,
Nicole

Friday, July 23, 2004 8:15 PM CDT

Happy ANDREW Day! That was our day at Yale today! We celebrated Andrew's last day of chemo today! The hospital had a little party for him with a big cake - chocolate with chocolate icing (Drew's request). He got presents and his doctors and nurses all came in to cheer for him. Tyler, Papa and Aunt Bina were there for it too. It was very nice.

Drew is doing so great this week. He is really eating great this week - especially if you count the 3 pieces of chocolate cake he had today! He made a new little friend in the hospital this week - 4 year old Quinn who was just diagnosed with AML last week. They played so much in the playroom, it really made the week fly by. They did several fun projects together and really enjoyed seeing the clowns every day! We even got a visit from ELKA the dog!

Well, Bill is with Drew tonight for his final night in the hospital, and he will be discharged tomorrow. I can only hope that this easy going week is a hint of our generally rough week ahead. Drew's counts will drop this week, which is when we need to be extra careful with germs, and any fever will send us back to Yale. But, I am trying to stay positive, and again am hoping that the way he has cruised through this week of chemo is a sign of the week to come.

with lots of hope,
Nicole

Thursday, July 22, 2004 12:23 AM CDT

Drew is doing great so far! Things started well on Monday, he didn't even say ouch when they accessed his port. He's been feeling well and in high spirits. Today is the first day that he's not eating well. Nicole has been there since Monday and Tyler and I have visited each day. We'll switch tonight and I'll stay nights until Drew comes home on Saturday.

Keep the good thoughts coming!

With hope,

Bill

Sunday, July 18, 2004 10:45 AM CDT

Three weeks goes by so fast! Here we are getting ready for Round 5. It has been a good 3 weeks off. We certainly enjoyed a bit of "normalcy" here. The boys played and saw friends, we went to the beach a few times and did the usual summer things. Yesterday we enjoyed a wonderful Family Fun Day hosted by a family that is a patient of Dr. Joe's. There was swimming, and horse rides, pinnata's and a bouncer. It was great to see all these kids having such a nice time and trying to dunk Dr. Joe in the pool!

Now we are getting ready for our final round of chemo, to begin tomorrow - which means laundry and packing for me! Drew & I will head to Dr. Joe's in the am, then to Yale for our 5 night, 6 day stay. Tyler has several playdates planned to keep him busy and keep Bill working. Bill & Tyler will be making many trips to Yale to visit, I'm sure, and other visitors are also WELCOME!

While Drew is actually looking forward to going back to Yale and seeing his nurses and doctors, I'm not so sure he will be as happy once we get there. Not sure what to expect, but just hope that his side effects are no worse than the previous round.

So, here we go...keep us in your prayers for a smooth cycle of chemo. Hope you are all enjoying your summer.

with hope,
Nicole

Thursday, July 1, 2004 8:25 AM CDT

Well, we are finally ALL home! We got home from Boston Friday afternoon and it really felt very strange to unpack - everything! We enjoyed a peaceful day at home on Saturday, but then Bill had to leave for a work related trip to Las Vegas. This certainly did confuse the boys a bit, and Andrew still thought he would be in Boston this week again! He was of course happy when he remembered that he was all done with radiation.

So we have been trying to once again do whatever is "Normal", which I have kind of forgotten! Tyler is doing soccer camp this week, and he started swim lessons. Otherwise I have been busy trying to get the house organized after 8 weeks of being away. Drew seems pretty happy just to be home, playing with his toys. The weather has been perfect, so we did get the kiddie pool out and the boys both had a friend over yesterday. Bill got home early this morning, so we are looking forward to a fun holiday weekend together.

And well me, I am just so excited about my new refridgerator and dishwasher that are coming tomorrow (now I know I am old when kitchen appliances excite me!) Oh - Bill also won an award for work during his trip - yeah Bill!

OH Drew - well he is doing great! The redness on his neck is fading every day. His hair is growing back - he has cute little fuzz evenly all over his head, and he is FULL of energy. So, we have a few weeks to chill out and enjoy summer, and July 19th we will go back to Yale for Round 5 of chemo. Not sure what to expect as far as side effects since it will have been almost 2 months since his last chemo, but we are anticipating 2 weeks of him being out of commission. This means we have once again cancelled Drew's "birthday party", and we have postponed his "Make-A Wish" trip (which had been scheduled for July 28th).

All in all, we are grateful for how well Drew has handled treatment. He continues to be in excellent spirits, and is fully aware that he has one more round of treatment. He misses his doctors in Connecticut, and is actually loooking forward to going to Yale to play and see his nurses!

Tyler did great with all the chaos of our schedule, and did excellent in first grade! He is very excited about his 2nd grade teacher, and is very happy that his best buddy is in his class.

So, thanks again for all your continued prayers and support. We are almost done with this chapter - after which we will go back to scans every three months in Boston. His next set should be in September, and if he gets the all clear, they will remove his port.

with love and hope,
Nicole
Happy SUMMER!

Tuesday, June 22, 2004 8:09 PM CDT

Friday, 6/25, 9:30am
WE'RE DONE! Drew is enjoying his party, and we will soon head home!!!!!
We did get to the Red Sox game yesterday, and the kids are having fun! Gotta go enjoy the party!
Nicole

Only three radiation treatments left. Nicole and Drew are still managing to keep busy during the day with trips to the park. Tomorrow is Tyler's last day of school so I'm taking Thursday and Friday off from work and I'll bring Tyler up to Boston so we can all be together for the end of Andrew's radiation. Tyler has been bringing home all the work he did this year... this one choked me up:


"My Bubble Story" by: Tyler Cordes, June 2004

I was at the hospital with Andrew. There was a ball game next door. They used a bubble for the ball. It hit Andrew in the head. Then the bubble went around Andrew. He flew up to the sky. We couldn't get him down! So we drove to the nearest airport. We borrowed a plane and flew to Andrew and popped the bubble with the nose of the airplane. Andrew started to fall. We caught him on the wing of the plane. Then we landed. Andrew was all better! The bubble cured him. Then we went to the baseball game. We caught a foul ball!


It is illustrated with a picture of Drew in the bubble Tyler flying the plane and Nicole and me on the ground.

So, I'm glad Tyler will be at Drew's little end of radiation party in the playroom at the hospital (Drew gets to choose a snack for himself and the other kids). Then they'll get to hangout (play, bicker, fight, tease, hug, and drive Nicole up the wall) for the next three weeks while Drew recovers for his last round of chemo. I can't wait.

We're going to try and catch a Red Sox game this week, maybe we'll catch a foul ball.

With hope and love,

Bill

Friday, June 18, 2004 2:49 PM CDT

It's hard to believe we only have one week left to go. I actually think Drew is going to miss it - he has way to much fun playing in the play room, and we certainly are doing a lot of sight seeing. This week we spent lots of time at the park, and had a great visit to the Zoo.

We made it home nice and early today, so we had some time to go and visit Tyler at school during his end of year party. Other than it being really hot, the kids seemed ot have a good time. Then Drew wnet for a quick swim with his buddy Colin. A busy afternoon, but always nice to see the kids having fun.

But now I must go and finish the laundry - what else is new. Otherwise we are all good. So five more treatments, and then we are anticipating approximately a 3 week break before we do the last round of chemo at Yale.

Happy Father's Day to all you Dad's out there.

with hope,
Nicole

Sunday, June 13, 2004 9:16 PM CDT

The weekend has gone so fast again. But the boys had lots of fun. We went to the school picnic on Friday, Saturday was Tyler's final soccer game. Sunday was a day of birthday parties. Tyler got a goldfish as a party favor - we named him "Flippy". And we are just happy he is still swimming. He seems content with his new pet.

Drew was pretty upset when he learned about Lenox, but it passed very quickly and he hasn't really mentioned it since. We do know that it was not a snake that killed Lenox (Bill caught the snake we suspected and after studying it better, we realized it was not a Copperhead). So we believe she probably ate something or it was natural causes.

The second party the boys went to today was at "My Gym". That is where Andrew had been taking gym class. He misses it a lot, so he was so happy to be there.

Well, we are back at the Beacon Townhouse this week, and they are supposed to have DVD players in the rooms now, that would be a treat! But for now, I must go finish packing.

with hope,
Nicole

Wednesday, June 9, 2004 9:31 AM CDT

Thursday's update -
So - we got to see Nomar play! Those Red Sox fans are pretty crazy! We had a fun night - and we left right before the rain hit - lucky us!

Tyler was pretty sad over the passing of Lenox. Drew still doesn't know - we will tell him when we get home tomorrow.

But we are having fun with Papa & Aunt Bina, and as always looking forward to going home tomorrow!

Thanks for all your notes - I love reading them!
with hope,
Nicole

Well - here we are in HOT Boston today! We are expecting the arrival of Papa and Aunt Bina. We will be heading into the "city" for a stop at the "Scooper Bowl" for some ice cream, and a walk through Fanueil Hall, before we head to the Red Sox Game. Drew is very excited for the game, although I am not sure how long he will last.

Drew's treatments are going fine, his throat is starting to hurt a little, and his neck his quite red, although I have been using a special cream that appears to be working. 21 treatments down, 12 to go.

On a sad note, Bill had to deal with an unfortunate event at home. Our dog Lenox woke up not well today. And despite Bill's efforts to get her to the vet, she did not survive. We believe she may have been bit by a copperhead snake last night before bed. So, clearly not a good day in Shelton, and of course one more thing to worry about.

Stay cool everyone. We will certainly try. The ice cream should help!

with hope,
Nicole

Monday, June 7, 2004 10:17 AM CDT

Good Morning!
Drew & I are just packing up at home getting ready to head up to Boston. He has a late treatment today, so we had time to visit with his best buddy Colin this morning - and mom got to enjoy a nice coffee break.

We had a very full weekend again! On Saturday Drew got honored as a "Survivor" at Shelton's Relay For Life. We all walked the first lap, it was very moving. Next year we hope to be more involved and make an event of it.

Sunday, Tyler had his Karate Tournament and received the 1st Place trophy in his group! We are so very proud! Then we went for a nice breakfast, and a visit with one of Andrew's other best buddies - Nathan. We all had a good weekend, but as usual, not enough time.

So, 3 more weeks to go - 15 treatments. We are hoping for no more machine delays, and it is expected that Drew will have his last round of Chemo at Yale sometime between July 6th & 9th - we hope.

Papa & Aunt Bina are coming to visit us this week in Boston - and we will be going to the Red Sox game on Wednesday! It is supposed to be a nice week - which makes it go much quicker!

So, I really must go finish packing the car, and be on my way. Hope everyone is well and enjoying Spring. Thanks as always -

with hope,
Nicole

Also, anyone who might be in the Boston area this week - there is a special Jimmy Fund Charity Event going on called the "Scooper Bowl". It is happening in City Hall Plaza (Gov't Center T stop). I think it is $7 to get in, and it is an ice cream tasting - all you can eat! From 11 am to 6PM, Tuesday, Wednesday & Thursday. Sounds like fun!

Tuesday, June 1, 2004 2:04 PM CDT

We had a great weekend home - and here we are back in Boston again.

We got to visit with Grandpa & Wawa, and play outside at home. On Monday, we enjoyed the Shelton Parade. We went to see Shrek 2, and had a nice BBQ with some friends.

This morning, Drew went to school for the last day of nursery school. He was so happy to see all of his friends & teachers.

Treatment for today is complete, and Drew is just playing Nintendo! Soon we will be off to our home away from home to settle in.

See you all soon -

with hope,
Nicole

Thursday, May 27, 2004 8:09 AM CDT

We had a great weekend at home! Drew got to visit with some of his best buddies and we did a lot of playing outside.

Monday morning we were able to bring Tyler to school and then head up to Boston, only to find that the radiation machine was down, and Drew was not able to receive his treatment. The day was not a total waste though, because Drew did have to have his counts checked at the Jimmy Fund (which are all normal right now). He also had an echocardiogram on Monday, which also came back normal.

Tyler was here visiting Tuesday and Wednesday, and we did some sightseeing around Boston - the Aquarium, the Museum of Science, and a stroll through Fanueil Hall.

So here we are it is Thursday already, and we are again waiting for the machine to get fixed! Not good, but they do beleive it will be up & running soon, so we will get treatment in today. Monday's delay extends us out until Friday, June 25th. I don't mind that too much, I am just hoping we don't get extended agian and have to come back another week.

Drew is doing well, he does get a little tired in the afternoon, especially this week since he had Tyler to be crazy with!

Bill's Dad is recovering nicely from his open heart surgery last week, and may be home for the weekend.

Drew and I will be home Friday afternoon for a nice long weekend since Monday is a holiday. So, hope you all enjoy & stay well.

with hope,
Nicole

Friday, May 21, 2004 4:45 PM CDT

We are Home!!!!
Drew & I got home about 12:30 today. Of course I have been unpacking and doing laundry, but we picked Tyler up at school and the boys played outside for a while. Feels weird to be home.

We are getting ready for soccer practice, and tomorrow we have soccer game and Tyler's karate test. Trying to do the "normal" things!

Bill's dad is doing well, but not quite ready for the boys to visit. Maybe by Sunday, we'll have to see.

Drew had a great day yesterday - we found a really great park, and he was the hit of the park with his new bubble gun! We are looking forward to some family fun this weekend. Thanks all for your continued support, especially all of you who are feeding Bill & Tyler in my absence!

with continued hope,
Nicole

Thursday, May 20, 2004 7:03 PM CDT

Drew is still handling the radiation well. He has a few mouth sores left over from the chemo but is otherwise feeling great. He put on quite a show for a film crew at the Jimmy Fund Clinic today while wearing the Grouch Marx glasses (with eyebrows and mustache) he got for being brave for radiation. He'll be home tomorrow for the weekend!!!!!!!!!

Drew's Grandpa had quadruple bypass surgery today. It was a long procedure and I still don't know a lot besides that it went well, but he wasn't even awake yet. Drew told my Dad to be brave, and my Dad told Drew that it was because of Drew's example that he was able to do this.

I've seen a few more hospitals than I care to for a while.

With hope,

Bill

Wednesday, May 19, 2004 9:30 AM CDT

Drew & I are settled in our new room at the Beacon Townhouse. It is very cozy, in a very nice area . We walked around a bit yesterday, and may take a short ride on the T which runs right past our building.

Drew has plenty of energy, in fact he is playing basketball with another little boy right now in the playroom at radiation. He continues to do great with his treatments. 8 down, only 25 to go...

We are looking forward to going home for the weekend to relax and spend time with Tyler & Daddy.

with hope,
Nicole

Tuesday, May 18, 2004 12:32 AM CDT

Andrew is just about back to being Andrew today! We are still at Children's but just waiting to get discharged. He is pretty happy and full of energy. He did some painting today and is busy playing a computer game right now. He has been such a champ with his radiation treatments - goes in with a smile, lays down like a pro, and stays so still. Of course they love him.

He did make quite a bit of money this week, since we had to pay him to take his morphine (for the mouth sores). We are not taking it anymore, and the sores are getting better. He is not eating great, but he is getting by.

So, we are just waiting to head out and go check out our new Inn. This one is in a different neighborhood, and I am hoping fo find more to do in the area, especially now that Drew is feeling better. And generally we are done with radiation by 10 am! Of course, we are both really looking forward to coming home on Friday - it has been a long 3 weeks, but the worst is over!

Thanks for all your continued love & support & prayers.

with hope,
Nicole & Drew

Monday, May 17, 2004 8:36 AM CDT

Drew's white blood count was in fact low on Thursday. He also has bad mouth sores that make it difficult to eat and the pain makes him feel lousy overall.

On Saturday we got out to the Commons even though Drew wasn't feeling 100 percent. He managed to throw a ball around a little before climbing back into the stroller,content to watch Tyler play and give him a thumbs-up or down depending on if he made the catch or not. It was nice just being together.

Drew's temperature was up a little Saturday night but came back down. He didn't feel like getting out of bed on Sunday and his temperature started rising. It hit the point we needed to call the Oncologist around 2pm, and by around 3pm he was in the ER awaiting admission. His fever got as high as 103. He also needed a transfusion for platelets. The strange thing was that his white count had actually risen just above the point were his body can fight infection. They admitted him and put him on antibiotics and fluids anyway.

He is feeling better today and did fine for radiation. The fever has been gone since last night. They put him on a low dose of morphine to help with the mouth sores and it seems to be working. He hasn't seen his Doctor yet today so we're not sure what they're thinking for discharge (normally it is at least 48 hours if his counts are low but they're technically not).

With hope,

Bill

Thursday, May 13, 2004 9:28 AM CDT

Good Morning! Drew just finished his favorite chocolate donut! He has continued to be the bravest boy and get his radiation treatments awake! It is so quick and makes our morning so much easier. His port was de-accessed yesterday, so now we can bathe and play like normal. And, we can eat and drink in the morning before treatments. He is very happy about that! We still get a few tears when he gets on the table, but he is so strong, that he gets through it. Lamby has been a very brave companion!

So, we are once again at the Jimmy Fund, waiting for counts. Today is the day we usually have a low white count, which means stay out of crowds. But the weather is pretty nice, a little cool, but we are still able to walk. Although, the big hill is not getting any easier yet.

Drew is anxiously awaiting the arrival of Tyler & Daddy on Saturday. If he is feeling OK, we will try to go exploring and maybe visit the commons. He is also very excited to ride the T soon, but not until those counts come back up.

with love and continued hope,
Nicole & Drew

Tuesday, May 11, 2004 1:01 PM CDT

After a very rough evening last night, Andrew woke up with a smile today! He had a great morning and was SOOOOOO brave! Andrew got his radiation treatment AWAKE! That means no anesthesia, and it was done in about 5 minutes! What a champ! I am so proud of him.

We finally got Andrew's blood transfusion. So we spent the day in the Jimmy Fund. He got Aunt Bina's blood, and is now full of energy! Boy that blood kicks in fast.

So, we are off to find a milkshake, and on then to our home. Hopefully, I can make it up the big hill! Boy am I out of shape!

Gotta go for now -
Love & hope,
Nicole & Drew

Monday, May 10, 2004 11:23 AM CDT

Drew was discharged from the hospital on Sunday. Tyler & Daddy were up to visit for the weekend. We had a nice lunch together before Bill & Tyler had to take the train home to New Haven.

Drew had his first radiation treatment this morning. He did great! Tomorrow he is going to try it awake! What a brave boy!

Right now we are just waiting for his counts at the Jimmy Fund. Drew will need a transfusion this week, we are hoping to wait till tomorrow, when Aunt Bina's blood donation will be ready for us. So, Drew is pretty tired today, but otherwise feeling OK.

Our home away from home is very nice and peaceful. Thanks to the beautiful weather, we walked to the hospital today. It only took about 11 minutes, actually quicker than driving.

Gotta go for now -
Hope all you mom's had a nice mother's day. I was just happy that we were together.

with hope,
Nicole

Friday, May 7, 2004 11:33 AM CDT

Day 4 of chemo is in progress. Drew is doing fine. He is not feeling his best, he already took a nap today. But, right now he is playing a game with one of the great volunteers here. They have a well staffed playroom/resource room with people who offer to play with the kids throughout the day. Playstation has made it to our room! Drew's roommate is also enjoying it so they have been taking turns.

Last night we took Drew over to radiation to see if he could lay still - unfortunately, he would not even lay down on the the table. He did sit on it, and we tried everything, but no luck. The maching is kind of big, and he said it was scary. He knows there will be no "ouchies", but I think he has kind of had enough of all the new things we keep springing on him. The staff over there is great - hopefully over time we will convince him to lay down and be still. For now, we will proceed with anesthesia for daily radiation treatments, which certainly complicates things. That means no eating and drinking before each treatment. It also means they will access his port on Mondays, he will stay accessed until Fridays. I was hoping that the idea of accessing would be enough to get him to lay down - he has become very apprehensive about his port and really gets upset when it is time to access.

All in all we are doing fine in our new surroundings. He is excited that Tyler is coming tomorrow, and Papa & Aunt Bina are coming today. Aunt Bina will be giving blood up here in anticipation of a transfusion for Drew next week.

We should be discharged on Sunday, and will then proceed to our local lodging about 1 mile from the hospital. We hope to be home for the weekend on May 21st.

Daddy & Tyler seem to be doing well - a busy week as usual. Thanks to everyone for sending them a great assortment of food!

I must go check on Drew - thanks for the continued prayers & support.

with hope,
Nicole

Wednesday, May 5, 2004 9:20 AM CDT

Hi everyone -
Drew & I are here in Boston and he is having a very good day! He is playing a new computer game while I type away. He played a few new video games and board games today thanks to some great volunteers in the play room. The new anti-nausea recipe seems to be working OK so far, and day 2 of chemo is complete. He is counting down the days until Daddy & Tyler come visit - hopsital life has certainly helped him learn his days of the week.

We also had a visit from Elmo today, and a nice artist drew a picture of Drew today! Stay well -
With hope-
Nicole

Drew was admitted to Children's Hospital in Boston yesterday for his fourth round of chemotherapy. He actually has his first infusion right in the Jimmy Fund Clinic at Dana-Farber Cancer Institute. Things went very smoothly and besides getting a little worked up over accessing his port for the IV he was fine.

The move to Boston from New Haven is aiding in the sharing of ideas between these pediatric oncology communities. Drew’s anti-nausea medication regimen from Yale is different than what they normally do in Boston, but they are giving it a try to see how it works for them. So, Drew once again is the ambassador of goodwill and knowledge… but he’ll have a tough time figuring out who to root for at the Yale vs. Harvard games, since Children’s Hospital Boston is affiliated with the Harvard School of Medicine.

After not eating dinner Drew had a big breakfast and is feeling good this morning. He is supposed to get a chance to practice in the radiation machine tonight, so hopefully he won’t need anesthesia next week.


With hope,

Bill

Saturday, May 1, 2004 9:04 PM CDT

Even though this should have been our easy week, it was a bit crazy with 2 trips back and forth to Boston. Tuesday we went up for Radiation Planning. Tuesday was just consults with doctors, but then Wednesday, Drew needed anesthesia so they could actually plan his treatments. This included making a mask to keep his head in the proper position during treatment and also 3 small tattoos on is his neck and chest.

We learned that Drew will need a total of 33 treatments. These will begin Monday, May 10th, and will end June 24th (assuming no other delays). Drew did fine. He had a little trouble waking up and his eye was slightly irritated from the mask. But the worst part was that he wanted pancakes and it was after 12 noon! He finally agreed to a bagel. We had chocolate chip pancakes and bacon for "Dunch" that night at home (Dinner/lUNCH), and it was "Dunchalicious!".

Friday morning we drove back for Drew's MRI and CT scan. This was our first time having these test done in Boston, so a slightly new routine for Drew. He got through the CT scan with no problem, but then he gave us a very hard time accessing his port to get sedation for the MRI. But, we let him sleep a long time after, and he woke up pretty happy. His port sight is slightly bruised because he was squirming so much, but hopefully it heals up before Tuseday when they need to access again.

He had a great day today playing outside. We went to Tyler's soccer game, and then the boys helped Papa and Daddy do lots of outside work. Then Papa treated us to a great Japanese Hibachi dinner! The boys love it, and it is great to see their smiles!

Monday we have a regular blood check to make sure we are all set for Chemo in Boston. If all is good, we will leave for Boston early Tuesday, to be admitted and start Round 4.

Tomorrow we will be enjoying a small post-birthday celebration with close family for the boys!

with hope,
Nicole

Monday, April 26, 2004 9:11 AM CDT

Drew was able to spend his birthday at home, right where he wanted to be! He told me Saturday that he was going to be home for his birthday and I think he willed away any fever that was coming.

With his ANC blood count at zero he threw up Saturday and was having bouts of being tired and not feeling well (in between playing outside and feeling great)which usually leads up to a fever and a hospital trip. Sunday morning he didn't feel well and said his stomach hurt, but still no fever. He was a bit "off" all day, but he spent it at home celebrating! Tyler was a great big brother and made sure Drew felt special. Drew's Grandparents and Aunt Michele were there to make it a party.

Nicole and I were a little anxious all day and kept checking Drew's temp. It's hard to relax when during the first 2 cycles he wound up in the hospital. I shouldn't have doubted him when he told me he'd be home for his birthday. I still have a lot to learn from that little boy.

His ANC is on the rise today (136). His immune system is still compromised but coming back. He does need a transfusion because his platelets are getting low. Normally they would wait another day, but we are heading to Boston tomorrow for Drew to begin radiation planning. I’d rather not be traveling (especially to a hospital) with Drew’s counts low. So, wish Drew well.

With hope,

Bill

Saturday, April 24, 2004 - Birthday Eve

Andrew had his doctors appointment Friday afternoon, and as expected his ANC was ZERO. So this is when we usually end up back in the hospital with the fever, but ....

So far he is doing great! He was a little ill this morning, but then he snapped out of it and enjoyed a beautiful day outside riding his John Deere, playing baseball, eating popsicles and having fun. He is very excited that tomorrow is his birthday.

We will be having a quiet day at home (we hope). I continue to be cautiously optimistic that we will remain fever free for the remainder of this cycle. Grandpa, Wawa, Papa, Aunt Bina, & Aunt Michele are coming to visit on Sunday for a small birthday celebration. (Due to Drew's low counts, he should not really be around a lot of people.) He has asked for macaroni and meatballs, and has already started eating the cupcakes I made him!

We are still waiting to hear from Boston exactly what day he will begin Round 4, but we will be there this coming week for his radiation planning and scans.

with hope,
Nicole

Tuesday, April 20, 2004 2:00 PM

The park was a blast! Drew is having a great day! We are now home and onto air hockey with Tyler, Brett & Jeffrey. Then they are banished to outside to finish enjoying this beautiful day! They are wearing me out!

Happy Spring!
with hope,
Nicole

Wednesday's Update:
Drew's check up today went fine. His counts are good, so he is free to play! Next check up is on Friday. The doctor was not happy to hear that Drew was refusing to take his new medicine (for the chicken pox), so we are now trying it in a powder form which we mix with milk. Dose 1 went down much better! Drew has been enjoying playing outside with Tyler and overall he is feeling great.
Nicole

P.S. The new furnace is so pretty!

Tuesday, April 20, 2004 8:21 AM CDT

Drew came home yesterday. After being quarantined for the week due to chicken pox, the door to his room opened at around 2pm and he walked out a free man with a skip in his step. At first he wanted me to carry him, but when he heard he was going to the toy closet he managed on his own.

It was a beautiful day so Drew played some baseball, soccer, frisbee, badminton, ring-toss, and went on the swings. That tired him out a little so then he took a rest. He had stored up a lot of words in the hospital and he let most of them out at dinner.

In addition to his normal weekly antibiotic to protect against pneumonia, and his Neupogen shot to increase his white blood cells, he’s on an oral antibiotic for the chicken pox for five more days. It takes him forever to get it down, he gags the whole time, and he needs it four times a day. Fun.

He had a good night in his own bed (well mostly, he did come in our room this morning). It was actually hot in the house so who needs a furnace anyway, although we don’t have any A/C now either. That will be resolved Wednesday and Thursday when the furnace and hot water heater are replaced.

Drew goes to the oncologist Wednesday for blood counts. Hopefully the plans in Boston for his radiation planning, CT scan, and MRI work out next week. Since every cycle seems to be different, maybe this will be the cycle he doesn’t get a fever and have to go back to the hospital.

Drew, Tyler, and Nicole are off to the park today to enjoy the sunshine. Thanks for all your prayers and support!

With hope,

Bill

Friday, April, 16, 2004

Wednesday, 4/14/04:
Round 3 of chemo has officially started. It was bizarre how happy we all were to hear that Drew was able to go to the hospital today... Not something you normally look forward to. If everything goes smoothly he'll be home Monday.

The anticipation caused by the delay has been eating away at us. You can barely figure out what you'll be doing from one moment to the next. And yet somehow we were able to get quotes from three oil companies for a new furnace and water heater in a 24 hour time span. Yes we have no heat. Luckily we still have a house after seeing the hole in the furnace that was blazing away behind the service panel.

So Tyler's in my bed with an electric heater going in the room. Drew and Nicole are warm at the hospital. Drew is doing well. The clowns visited today... and Drew had them laughing hysterically. His spirits were great when I spoke with him tonight too.

We're not sure what this delay does to our radiation planning or schedule for treatments in Boston. It's a good thing Nicole and I are so laid back (in case you're wondering that is about as sarcastic a comment as they come).

Please keep Drew in your prayers, that he will get through the week safely, that he will not have any adverse side effects from the treatments, that he will be cured of his cancer, that he will spend the rest of a long life touching the lives of others with all of the goodness and love that has been spread upon him.

God bless you.
With hope,

Bill

Thursday's update, 4/15/04:
Just to keep things interesting (if they weren't already) Drew's doctor's noticed a "rash" (a couple of small pimples on his side and back) yesterday before chemo. The good news is they know it isn't from the chemo otherwise they wouldn't have started it. The bad news is it could be chicken pox. For someone undergoing chemotherapy this is serious because of the weakened immune system. They ran some tests that are inconclusive. They don't think it is chicken pox based on how the rash is coming and going but they are watching closely. And, Drew had to be moved from his great room on his normal pediatric oncology ward to a negative pressure room (this keeps the air he could be contaminating from entering the rest of the hospital) in another ward. So, Nicole had to endure yet another move. Tyler and I are exhausted from late nights and early mornings. I'll stay with Drew tomorrow night and Saturday night. Here's hoping that Drew doesn't have the chicken pox.

Bill

Friday, 4/16/04:
Well - they really DON'T think it is chicken pox, but in the rare case that it might be, they are giving Drew an anti-viral drug to keep it mild, if it is. The concern is that next week when his counts drop it could get out of control. So one more drug. He is getting a little aggravated with everybody looking at his skin. He told me "My skin is fine, mommy, I know". But, his new wing loves him too, and they think he is the cutest thing, even though he is not showing his best side this week.

So, Bill is with Drew tonight. I met up with Tyler at soccer practice tonight, and we have an 8am game in the morning - so much for sleeping in!
Thanks for the prayers.
with hope,
Nicole

Monday, April 12, 2004 2:41 PM CDT

Tuesday's Update:
Well, Drew's counts are rising, but not yet where they need to be. So, we will try again tomorrow.

Monday, April 12th:
The surprises just never end....
Drew is home today and not at Yale getting Chemo as scheduled. We went to Dr. Joe's all packed up and ready to go, but his ANC was below 1,000, which means he can not receive chemo. So his port is still accessed and we will go back in the morning to re-check his counts. The doctors feel that by Wednesday his counts should be high enough, but we are hoping that tomorrow shows good counts.

Drew was actually sad that we weren't going to the hospital, he said "I want to get better". But he's doing fine now and just having a relaxing day.

The boys had a wonderful Easter. They were very happy to see their cousins on Long Island. It was really nice to be with so much family! Tyler also had his birthday party on Saturday, 15 kids playing soccer and wiffle ball. And Drew played just like he was a first grader!

Hope everyone had a great holiday weekend! We will keep you posted about Drew's progress.

with hope,
Nicole

Wednesday, April 7, 2004 10:24 AM CDT

Andrew's counts have indeed rebounded! His ANC is once again up to 16,000, which means we can stop the nightly injections. He is free to enjoy the week. He also had an echocardiogram yesterday, which appeared fine.

Today we are celebrating Tyler's birthday, and Drew is very excited for his brother. Papa is coming to visit, and will sleep over so he can visit at Drew's nursery school tomorrow for grandparent's week. The Easter Bunny will also be at school tomorrow - what a nice treat for Drew. This will be his last day of nursery school for the year.

Enjoy your weekend, as we sure hope to! Drew will be admitted to Yale on Monday morning for round 3.

with continued hope,
Nicole

Sunday, April 4, 2004 9:04 PM CDT

Well - the master is Home! Drew arrived home with Daddy in time for lunch. He had a relatviely normal day, playing with is new toy from the "Toy Closet". (That's the big locked chest at the hospital that you get to pick from every time you leave.) Then he and Tyler opened up a very generous basket that arrived from some friends yesterday. They are still working on the sharing thing!

Drew's ANC was up to 3,000 today, which means he is no longer neutropenic - and we can visit and play and do whatever. Our "normal" week has arrived. So, I will take him to his favorite place - "My Gym" - tomorrow for a little running around and playing with some friends. Tuesday we will have some doctors appointments for blood counts and his echocardiogram. But, Thursday he will go to school, in time to see the Easter Bunny!

We hope to enjoy Easter Sunday with the family on Long Island, before we start Round 3 next Monday. And we will try to get some new pictures up this week.

Have a wonderful week!
with continued hope,
Nicole

Saturday, April 3, 2004 9:41 PM CST

Drew is doing well today, with no sign of infection. He has not had a fever since Friday morning, so he is scheduled to come home tomorrow. He appears to be feeling better, he woke up asking to play Crash Bandicoot! Then Bill gave him the new Monsters, Inc game that came in the mail the other day, so that is his new obsession. (He wouldn't even say hello to me and Tyler when we went to visit!)

But we did end up having a nice visit and some lunch together. He is eating pretty good, but has started to develop some mouth sores, which is an expected side effect of the chemo. So we will try to get those under control before we start our next round on April 12th.

We are hoping for a "normal" week. Tyler will celebrate his 7th birthday this week, so hopefully Drew will be well enough to enjoy it too.

Some spring weather would be nice too - although I did start my first fire tonight, since we had no heat again. But that has been fixed. Tyler was my little helper and we enjoyed movie night!

with hope, especially for Drew to come home tomorrow,
Nicole

Friday, April 2, 2004 9:19 AM CST

Drew was admitted through the ER on Wednesday night. It took two hours to get him up to the pediatric oncology floor (which everyone has told Nicole is record time). So far there are no signs of infection through his blood cultures or chest x-rays. His red blood count was low so they transfused him overnight. He has Papa’s blood in him now, but I told him not to worry, his hair will still grow back. Thanks Dad!

It looked like he could come home tomorrow… but he had another fever last night, so they’ll keep him 48 hours longer to monitor for infection. That being the case I’ll take my shift staying at the hospital tonight and tomorrow. Hopefully Drew can come home Sunday.

Drew does have a cold so he’s a little sleepy. There is a new staff of Residents on the floor, and cold or not he had them fighting over who gets to be his Resident Doctor. He’s even taking it easy on PlayStation so he must not be feeling 100%.

Tyler misses Drew and Mom a lot this time. He had karate and a “Share Fair” at school last night where some of his projects were on display, so that kept him busy. We’ll go visit tonight and Nicole will bring him home.

With hope,

Bill

Wednesday, March 31, 2004 10:55 AM CST

Tonight's update - Drew started with a fever around 3pm. After giving him Tylenol the fever returned tonight... So, with his low blood count and a fever (which could be a sign of infection) he's on his way to the hospital now with Nicole. Drew's not feeling great because of the fever and wants to stay home. Tyler's upset that Drew is going back.

Bill


Morning update -
As expected, Drew's blood counts took a nose dive today. His ANC is zero, which means he is neutropenic. His red cells are still dropping as well, so he will be getting a blood transfusion on Friday. Last night, he was a little ill, but he woke up feeling good today, other than tired and a headache, which is all a result of the low red blood cells. Hopefully the transfusion on Friday will ease that. So, for now we are back to strict germ control and limited visits.

However, Drew did have a great day at school yesterday. He told the other kids about the clowns at the hospital, and when asked about his hair he said "it will grow back!". He enjoyed an Easter Egg Hunt in music class, and was so happy to see everyone!

with hope,
Nicole

Monday, March 29, 2004 2:02 PM CST

Drew enjoyed another beautiful Sunday playing soccer and baseball outside with Daddy! He is feeling great, just gets tired a little easier than normal.

This morning we went to the doctor and got a good report. His white counts are actually up a bit, but his red count is dropping. They gave him another injection to help boost the red cells, but are expecting that he may need a tranfusion this week. But no fever and good counts means he is free to do whatever! So we went to the mall!

He is pretty tired, but other than that he is really doing well. Thanks for all you great posts to the guestbook.

with hope,
Nicole

Saturday, March 27, 2004 5:43 PM CST

Drew is Home! We were actually home by lunchtime. Drew is in a great mood, and so happy to be home. He did much better getting the tape off to de-access his port, thanks to the mineral oil, and then he got to pick another great toy from the toy closet.

So, we are trying to enjoy a peaceful weekend, as we prepare for the trips to the doctor's office this week. We will go Monday morning to check his counts, and hopefully we will be able to stay clear of the hospital for 2 whole weeks.

Next round starts April 12th, at Yale. And round 4 will begin May 3rd in Boston, when we will also begin radiation treatments for 6 consecutive weeks.

Thanks for all the continuous prayers & support.

with much hope,
Nicole

Friday, March 26, 2004 6:10 AM CST

Drew is doing great through round 2. It is hard to believe he is actually receiving chemotherapy this week. Yesterday, (Thursday), he got a visit from his 2 favorite clowns, then we went to a "play group" on another wing, for over an hour. He had a blast. Upon return to our room, we learned that we had to move out of our single and into a double. He had a little issue with moving, but the staff was great in helping to distract him. I had my own issues, but it was Bill's turn to spend the night!

But then...Tyler came to visit! They were both so happy to see each other. We had pizza together in the Family lounge, and then the boys played in the playroom. Tyler won the air hockey game, but Drew held his own.

So they are scheduled to start his chemo early today, about 9 AM, so we are expected to be out of the hospital by early afternoon tomorrow. He has had no nausea at all, I think we found a good combination of drugs to keep it under control.

with hope,
Nicole

Drew's Funny quote of the day:
"He doesn't know anything, does he?"
(Drew said this to Clown Dr. Noodles, about clown Dr. Chester Drawers, as they were joking and singing about Spiderman!)

Thursday, March 25, 2004 6:04 AM CST

Halfway through round 2 and Drew is doing phenomenal! He doesn't have any nausea and his spirits are great. Nicole is doing well but I'm sure she's ready for a break. I'll stay with Drew tonight and Friday. Then, hopefully, Drew will come home Saturday this time. They are giving him his chemo an hour earlier each day. As long as they don't get off track, Drew maybe ready to go by midday Saturday.

Believe,

Bill

Monday, March 22, 2004 8:11 PM CST

Just a quick update to let you know that Drew has started his second round of chemo and is doing well. He was admitted to Yale-New Haven this morning. After all the prep work and pre-meds were given he started his chemo at 3pm.

He's in the newly renovated Pediatric Oncology wing and making the most of the new playroom and the generously donated PlayStation 2 game system. He met a 3yr. old named Jack who was being discharged today. Jack managed to cause quite a stir after locking himself in the bathroom.

Overall Drew is more relaxed about his treatments than for round one. They've increased his anti-nausea meds which will hopefully make for a better week.

I've posted a new picture from today of Drew and Mom in his room.

With hope,

Bill

Sunday, March 21, 2004 5:35 PM CST

Tomorrow starts round 2 of chemo for Drew. We'll take him to his Oncologist's office in the morning for blood counts then head off to the hospital to be admitted for the week.

Drew will be in the newly renovated wing of the Children's Hospital, 7 West, for Pediatric Oncology. We're happy that he'll have the same nursing staff as round 1, because they are great.

I'll try to update the journal during the week so you'll know how he's doing. Hopefully no worse than last time and maybe even a little better.

Drew's hair is falling out fast. He knows, and just says that it'll grow back. We were out a lot this weekend. He doesn't see the people looking, but I do. Cancer, what a stigma. We've accepted the diagnosis, but believe Drew will be cured. Believe with us!!!

Please keep Drew in your prayers this week. He may not be feeling all that great at times because of the drugs. He bounces back fast though. He's either had us cracking up laughing, or yelling at him for spinning, jumping, kicking, and throwing all weekend!

Bill

Drew's Funny Quote of the Day: "You Go Girl"

Wednesday, March 17, 2004 9:12 AM CST

Happy St. Patty's Day, and get this snow out of here! Drew was supposed to see his surgeon in Boston today, but we’ve decided to postpone rather than brave the icy roads early this morning.

We are trying to help Drew after all, not wind up in a car crash. His neck seems fine and his surgeon will see him when he goes for his radiation instead.

Nicole noticed some hair loss last night during Drew’s bath (his hair not hers, hopefully we’ll just go gray from this). We’ve heard it happens fast. Drew got a buzz cut last week to avoid the clumps coming out. Tyler and I have pretty short cuts ourselves.

Drew went to school yesterday and was happy to be with his friends. He also had his good buddy Colin over for some playtime.

I’ll steal Nicole’s closing because it is so true, and important.

With hope,

Bill

Monday, March 15, 2004 9:44 AM CST

Great News! Drew's blood counts are soaring. He has doubled his white blood cell ANC since BEFORE he started chemo; it was basically zero on Friday. So he isn't at risk of infection. His platelets more than doubled since Friday, and are within normal ranges. He can stop getting his nightly shot too! No more Oncologist visits until we start round two of chemo next Monday. Drew can go to school this week and make all the normal trips with Mom.

He is re-scheduled to see his surgeon in Boston for a follow up on Wednesday, since we had to cancel last week when Drew was back in the hospital.

Tyler is receiving a “caring kids” award at school today. Drew can go and get sneezed on by every kid at Booth Hill Elementary without a problem (sorry for the visual but you know what I mean). We are very proud of Tyler and he deserves some special attention of his own!

Bill

Saturday, March 13, 2004 1:31 PM CST

Drew's blood counts are still low but normal sounds have returned to the house, brothers bickering and crying, the tv blaring too loud. I'll go out for a haircut, stop at the bank, and get a watch battery. Nicole also has a hair appointment, some groceries to pickup, and will get a pedicure. Normal sounds have returned to the house..."And that has made all the difference".

Bill

Friday, March 12, 2004

Visit to doctors office goes well. Drew is still neutropenic, but no fever. They are watching his platelets - they are dropping, but not yet in need of transfusing them. Also watching red blood cells - he gets a shot to help boost the red cells, and hopefully avoid a full blood transfusion this cycle.

We are home early, and have now had 2 relatively normal days at home, playing with our own toys and sleeping in our own bed. At night however, we are doing daily shots of neupegen, which is to help boost those white blood cells. Drew does not enjoy this, but he is dealing with it. Tyler runs and hides when it is time.

I am also working on fattening Drew up! He did lose weight the week in the hospital, but has gained it back already - thanks to lots of bread and butter, milkshakes, and any snack he wants!

Wednesday, March 10, 2004

No fever since Monday at 5PM. Even though Drew is still neutropenic, they are releasing us from the hospital. Great news!

It ends up taking us over 1 hour to remove the tape that is covering his port. Not fun. He sleeps the whole way home, but he is pretty happy to see Tyler when we get home, and happy to sleep in his own bed. Any sign of fever, we must go back to Yale. Next appointment is for Friday morning, to check blood counts.

Monday, March 8, 2004

We go to the doctors office at 10 am. They take blood from his port. We learn he is neutropenic. His white blood count has dropped and his body has no ability to fight infection. Because of the fever, he must get re-admitted to the hospital to receive antibiotics.

So, they re-access his port, and off to Yale we go for at least 48 hours.

Sunday, March 7, 2004

We are home after 6 days in the hospital. It is a beautiful sunny day. I take Drew out for a little while - he rides his new scooter, playes some soccer (see photo), and some baseball. After 45 minutes, we come in to take a bath. After a snack, Drew takes a much needed nap. He wakes up with a fever.

After a call to the doctor, she tells us to treat with Tylenol, and we need to go to the office in the morning. The fever continues all night, but the Tylenol is helping.

Monday, March 1, 2004

We have spent the last week recovering from surgery. Drew had an echocardiogram to get a baseline of his heart last week. All was clear.

Desite a fever overnight, we go to Dr. Joe's for bloodwork. We are given the OK to head to Yale, to be admitted for the week and start chemo. We arrive at about 1:30, chemo does not actually begin until about 5:30 PM Monday evening. They were waiting for some additional blood tests.

They automatically start with the anti-nausea medication, which he will get every 4 hours for the rest of the week. Then the chemo starts. Night one is relatively uneventful.

Some nausea begins on Tuesday, by Tuesday night we start trying additional anti-nausea meds. Throughout the week, his worst time seems to be from about 5 PM to 10PM, with nausea and some vomiting.

He remains in very good spirits throughout the week. We play a lot of video games!! He is the highlight of the floor. All the nurses love him. He is teaching them all about the Ninja Turtles and the Power Rangers.

We get released on Sunday morning, after an extra night of hydration and anti-nausea meds.

Thursday, February 19, 2004

Andrew has surgery on new tumor at Children’s Hospital of Boston. Surgeon removes tumor and felt he got a clean plane around it. He was pleased that vocal cords, trachea and thyroid were not involved. They also implant a port in Drew’s chest. This is just under the skin and will be used to administer his chemotherapy.

We stay overnight at the hospital. Drew is on morphine every 4 hours, so he is a bit out of it. Tyler is there to visit, and so is Grandpa, Wawa, Papa & Aunt Bina. He wakes up Friday much happier, and they release us to go home.

Wednesday, February 11, 2004

We go to Boston to meet with surgeon. He shows us films. You can clearly see tumor. There was a sign of it on November MRI but it was smaller.

We also meet with oncologist at Dana Farber. They inform us that in addition to surgery, we will do chemo and radiation. Doctors just need to discuss what order. Chemo protocol will be 5 rounds of Ifosfamide and Doxorubicin, 1 week on, 2 weeks off, plus 6 weeks of daily radiation. So 21 weeks of treatment in total.

Thursday, February 5, 2004

I find a message on the answering machine from Dr. Joe, Andrew’s oncologist in Guilford, to please call about Andrew’s MRI. I know there is a problem, because for a year and a half, they have never called me to tell me things are clear. I always call them to get the good news. I immediately call the office and leave my home # and cell phone number, since we will be out for the evening at a Relay for Life meeting. Dr. Joe calls just as the meeting is starting and gives me the news that a new tumor has been detected on Drew’s MRI. This tumor is on the left of his neck measuring 2.8 by 1.6 cm. I begin to cry, and my heart just sinks. While we always knew this was possible, of course with every cycle of tests you pray and hope for the best. He requests I call the office in the morning to come in on Monday morning.

February 3, 2004

We go for Andrew’s regularly scheduled CT scan and MRI, which have been occurring every three months since October 2002. This is the first time we are doing both tests on the same day because now Andrew is comfortable doing the Chest CT without sedation. The MRI is about a 2 hour test, for this he gets general anesthesia.

October, 2002

Here is a brief history of how we got to where we are.

In the summer of 2002, Drew pointed out a “boo-boo” in his neck. It was a small lump on the left side of his neck. We brought him to the pediatrician, who was slightly concerned and took blood. No sign of leukemia or lymphoma. So we watched the “lump” and went back at approximately 3 week intervals. During a visit with our ENT for Tyler, I had him check out Andrew’s neck. He said it was most likely just an enlarged lymph node, but due to its size, 2 cm, he recommends taking it out. The next day I return to the pediatrician, who now notices that the lump has grown slightly, and also recommends surgical removal.

Surgery #1 is outpatient on October 10th, 2002. Two hour surgery, Drew does fine.

October 18th, 2002 – we get the call of a lifetime from the pediatrician, that it was not a lymph node, but a malignant tumor. We are to be at the oncologists office in the morning.

Because we did not get clean margins, we need surgery again. We now will use a surgeon at Yale. We also have the changing diagnosis going on. It was first believed to be Embryonbal Rhabdomyosarcoma, which woule have required 41 weeks of chemotherapy. The night before surgery #2, we are told it is Fibrosarcoma, which would not require chemo, therefore, the surgical procedure of implanting a port is cancelled, and we are just operating on the tumor site.

October 29th, 2002 – Surgery #2 at Yale. Outpatient. All goes well. Pathology on this comes back that tumor was either fibrosarcoma or synovial sarcoma. We now realize it is absolutely time for a second opinion, and so we contact Dana Farber Cancer Institute in Boston, MA.

After the team of doctors (a pediatric oncologist, a radiation oncologist, and a surgeon) review all of Andrew’s test results and information, they recommend one more surgery to get better margins, or else they may recommend radiation.

December 9th, 2002 – we go to Boston for surgery #3. Surgery is again outpatient and 2 hours long. The surgeon pot in a drain in Drew’s neck, that he must keep in fo rseveral days, but they send us home.

Pathology come back a few days later, that we got clean margins, so we will just scan every 3 months. Scans occurred February, May, August, November of 2003. And that is how we got to our current scenario.

Tuesday, February 3, 2004

We go for Andrew’s regularly scheduled CT scan and MRI, which have been occurring every three months since October 2002. This is the first time we are doing both tests on the same day because now Andrew is comfortable doing the Chest CT without sedation. The MRI is about a 2 hour test, for this he gets general anesthesia.

On Thursday, February 5th, I find a message on the answering machine from Dr. Joe, Andrew’s oncologist in Guilford, to please call about Andrew’s MRI. I know there is a problem, because for a year and a half, they have never called me to tell me things are clear. I always call them to get the good news. I immediately call the office and leave my home # and cell phone number, since we will be out for the evening at a Relay for Life meeting. Dr. Joe calls just as the meeting is starting and gives me the news that a new tumor has been detected on Drew’s MRI. This tumor is on the left of his neck measuring 2.8 by 1.6 cm. I begin to cry, and my heart just sinks. While we always knew this was possible, of course with every cycle of tests you pray and hope for the best. He requests I call the office in the morning to come in on Monday morning.

Saturday, March 13, 2004 1:31 PM CST

Drew's blood counts are still low but normal sounds have returned to the house, brothers bickering and crying, the tv blaring too loud. I'll go out for a haircut, stop at the bank, and get a watch battery. Nicole also has a hair appointment, some groceries to pickup, and will get a pedicure. Normal sounds have returned to the house..."And that has made all the difference".

Bill

Friday, March 12, 2004 12:45 AM CST

I'll start by saying "Thank You" to all of you who have so generously interrupted your lives to help our family. Over the next week I hope to get this page updated with the latest info and some pictures.

Click here to go back to the main page.

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