History

Friday, October 16, 2009 8:06 AM CDT

OHHHH, so long since my last entry, and coincidentally it was snowing then and it is snowing now! It's not much of a snow, as it is only October 16th, but it is indeed snowing.
Anyway, I will reflect on things since my last entry in March.
The family went to Florida for our annual trip to Ft. Myers and the surrounding area....that was in April.
The kids finished their first year in the Willington school system and Steven and I often commented about what a great move this was for all of us. We are all really meant to be here in Willington...the school system is fantastic, we love the house and love the town.
Right after school got out we went back down to Florida for a trip to Disney which was our first time back since our Make A Wish trip. Surprisingly, the lines weren't bad and it wasn't too hot. It was during a real rainy spell here in CT, so the Florida sunshine did us all good!
The day we returned from Florida we picked up our new puppy which we selected just before we left. She is a petite little Shih Tzu named Sadie and she is just the cutest little love bug!
Our summer was mostly spent at home training Sadie and swimming in the pool. The children had friends to the house often, but we didn't venture off much as we didn't want to leave Sadie home alone for long.
School started at the end of August and no one here wanted to get back to the routine, but we had to do what we had to do!
A couple weeks into the school year Nicholas started in with some "worries" which seemed to all be related to the vigilance regarding Swine Flu prevention in school and at home. Hand sanitizer, bleach, hand wipes all triggered a big reaction...tears, etc. His worries quickly spiraled and multiplied to the point where he was afraid to eat off of dishes that had been washed with soap in fear that the soap is a chemical which could harm him.
To make a long story short, I have been on a leave of absence from work to maneuver our way from pediatrician to finding the right counselor to dealing with the school team (which has been excellent). Nicholas seems to be getting back on the right track, but it is a slow process.
Most professionals that we have discussed this with have a strong feeling that this anxiety traces back to Nicholas' treatment days. It was so very traumatic for him back then, but he was too young to communicate about it all.
Fortunately, I got up my courage to run this all by Dr. Altman (Nicholas' oncologist) yesterday and he reassured me that this is certainly nothing physical going on and further explained that it is extremely common for cancer survivors to experience anxiety issues even well after treatment has ended.
Fortunately, as I said, we are on the right track now with a good team helping Nicholas work through his worries.
I am not sure who reads this journal anymore, but felt that it was a good time to chronicle the past few months. If you have checked in, be sure to leave us a message...I guess the site is maintained as long as there is periodic activity on it.
Nicholas' annual check up to the Hem-Onc clinic is in November, so I will be sure to post something then as well.

Monday, March 9, 2009 1:19 PM CDT

It's SNOWING.....AGAIN!!!! I love the snow, especially when it means no-school, as I've always loved having the kids home on a snow day. But, this one started at around 1pm and it's going strong at 2:30. Plus, it's MARCH and time for spring! Yesterday it was in the 60s and Steven and I just loved seeing the kids out playing late on our first day of daylight savings time. It's days like yesterday that I think we appreciate much more than we did before Nicholas' diagnosis. Steven and I sat on the front step last night just enjoying the kids' voices as they came back from checking out a deer in a neighbor's yard.
We feel so very lucky that both children are thoroughly enjoying their childhood and both have adjusted so beautifully to our new home and town.
So, while I am really ready for spring, I eagerly await the childrens safe arrival home from school and wouldn't be disappointed if I could watch them playing in the snow this afternoon!
We are BLESSED.

Sunday, December 28, 2008 7:53 PM CST

Belated Merry Christmas to all!
By far the best present we received this holiday season was a great report from Dr. Altman at Nicholas' clinic visit on 12-18. The visit was brief...no tests or pokes. Just a check-up like a physical. Nicholas has grown 3 full inches since last year's visit! This month marks five years off-treatment!

Our first Christmas in our new home was really beautiful. It was fun for all of us to decorate someplace new. We cut down a tree together like we always do, but selected it from a tree-farm here in Willington. We decorated inside and out. We all truly missed our BIG and small "Nicholas trees" from our home in Vernon. (The big one had been lit by a tree company while Nicholas was in treatment and we lit it every year. People could see it from neighboring streets and it was so very special to many of our neighbors who knew it's true meaning to us...HOPE. The small one was a gift from our friends, The McGraths when Nicholas came off-treatment and that one symbolized renewal, growth, and so much more!) I still feel an ache when I think of leaving that one behind, but it had established itself so well in our yard there, that I was unwilling to take a chance in moving it.

But, our move to Willington was also a move to "MOVE ON" and create new memories and treasure new gifts in our lives.

The children continue to thrive in their new school. Kaeley earned the prestigious SCHOLAR designation in her first marking period which requires all A's and exceptional performance in the areas of Academic Responsibilities. She is on student council, in her fifth year of Irish Step Dancing and involved in Girl Scouts here in town. She's made many new friends and takes turns having sleepovers with them.

Nicholas is also doing great in school! He achieved the equivalent to High-Honors for 4th grade, is on Junior Student Council and is active in scouts in his pack from Vernon. One of my favorite Christmas gifts this year is a shelf Nicholas made for me in scouts!

Thank you for checking in and keeping Nicholas in your thoughts and prayers.

Best wishes for a Healthy and Happy 2009!

Friday, August 1, 2008 7:38 AM CDT

WOW!!! It has been a long time since my last entry!!! No news is good news, they say!!!
Truth is we have lots of news but indeed it is mostly all good!
For starters, Nicholas is currently enjoying his second year at the Hole in the Wall Gang Camp! Kaeley and I dropped him off yesterday and he will be there until next Wednesday! It was not as hard for me to leave him this year as I know he will have another wonderful week full of unimaginable fun! The camp staff in his group were so friendly and made me feel very comfortable. Nicholas was grinning from ear to ear!

We have lots of other news too! On June 23rd we moved from Vernon, our home for 13 years to Willington, Ct about 20 minutes away. For me this was difficult as we had lots of memories on Vinetta Drive. We had LOTS of ups and of course some downs there! I brought both of my babies home to that house, so leaving was a tough thing. But, we were outgrowing our sweet little cape and had found a colonial in Willington which we are making our home. After almost 6 weeks here I feel very peaceful and know we made the right move. We are in the country now, with lots of critters in our yard including deer!! The children are creating a "fort" in our back woods with the many neighborhood children! Nicholas has become a little fish in our pool.

On a sad note, we lost my dear grandmother, "Grammie B" which has hit us all very hard. Certainly I was very. very close to her, so it has hit me the hardest, but Steven and the children are really missing her as well. Holidays, especially, will just not be the same.

Steven started in a new facility within the same company the week after we moved. His commute is about 30 minutes on easy routes through beautiful country towns...no highway.

The children will be going to a new school in this new town. They will be together in the town's 4th-8th grade school. It is nice for me to know they'll travel together on the bus. They squabble as siblings do, but they love each other and will watch out for one another.

I'll resume teaching in September and continue my role as Pre School Coordinator. I will actually have some work-from-home things to do in prep. for the school year that will keep me a bit busier over the next couple of weeks.

Most importantly, Nicholas has remained HEALTHY and we thank God for that every day.

Thanks for checking in and please drop us a line in the guestbook. Nicholas has renewed interest in it as he has shared the website with his new camp friends and hopes to hear from everyone!

Enjoy the rest of your summer!

UPDATE 8/7/08~ Nicolas had a BLAST at camp! He has been sharing wonderful stories since he got home. We are so very grateful to the staff and volunteers for providing him with such a fabulous experience!

Friday, December 21, 2007 3:02 PM CST

Yesterday was quite a day! It started bright and early with Nicholas and I (MOM) heading off with the entire third grade on a marathon field trip! We went to the Legislative Office Building, The Capitol where we met Claire Janowski, our State Rep., Tony Guglielmo, our State Senator and Jodi Rell, our Governor. We then hopped back on the bus and went to tour the Mark Twain House. At this point I was ready to call it a day, but shortly afer arriving home it was time to be on the road again for Nicholas' six month check-up at the clinic.
There we saw many familiar faces and many new faces as well. Nicholas was seen by Dr. Altman who said that we had reached a milestone! We now "graduate" to annual visits. Part of the milestone was passing the final chest x-ray required by the protocol, which he did! Yes, my happy tears were flowing!
You'd think we'd all be ready to call it a day by this point, but NOOOO....Kaeley had a roller skating event which we all attended. As tired as Steven and I were, we just savored every moment of being able to watch our kiddos skate around that rink! We talked about it being just an ordinary night for everyone else there, but it was far from ordinary for us! It was an amazing evening of celebration.
May your holidays be joyous and may you find quite moments amidst the craziness to count your blessings~

Monday, December 3, 2007 8:58 AM CST

Holiday Greetings to All!

Today marks four years since Nicholas completed treatment. Yesterday was the FIFTH anniversary of the day we learned of Nicholas' diagnosis. We all talked about how blessed we are. Steven and I explained to Nicholas that we consider the five year anniversary as a special day, rather than a sad anniversary. We've all been through a lot in the last five years and we are all proud of that! Nicholas agrees!

We have met so many wonderful people in the past five years. We've gotten closer to many of our neighbors and old friends! Most of all, we have an appreciation for each other and value the little things so much more that we ever did before 12-02-02.

We got our Christmas Tree yesterday and by the time we got it in the house and strung with lights, Steven and I were all set to quit for the day. Our Little St. Nicholas really wanted to decorate the tree, so I pulled out his box of special ornaments and Steven and I watched in wonder as Nicholas admired each and every ornament and hung them all in the "perfect" spot.

Talk about a blessing!

Saturday, September 15, 2007 7:12 PM CDT

Just thought I'd update as we are approaching a new season, school has started and so much has happened over the last month.
I start by saying how I continue to count our blessings of good health and togetherness. You'd think after all we've been through that it would always be forefront in our minds to count each day as a blessing. I guess to a degree we do, but life does get busy and hectic and we find ourselves getting carried away in the rush as most families do. We have been reminded after the loss of Jacob Osit to savor each day together, treasure our blessings and slow down. We all find ourselves appreciating the beauty of sunny days, the vibrant colors of butterflies and our precious cuddle-time at night more than ever since Jacob's passing. So many people have shared with his family through his Caring Bridge site that they are experiencing the same appreciation for life...what an amazing legacy that is!

Yesterday Nicholas had a far-from routine dental procedure, and even found myself "appreciating" that! Let me explain!: Due to Nicholas' severe anxiety for all medical procedures, he never was able to tolerate having even routine dental x-rays or thorough cleanings. Back in April his dentist detected a cavity and suspected more. To make a long story short, in order to take care of the dental issues, Nicholas was fully sedated yesterday at Bay State Medical Center. While going through bringing him to a hospital, watching him be so very nervous and then holding him while he fell asleep was awful and reminiscent of a very rotten time in our lives, I couldn't help but be appreciative that we were only at the hospital for teeth!!
On to other news, Nicholas began the third grade with much more confidence and fewer worries than he had starting second, and no nightmares or sleepwalking so far! He seems to like his teacher and has a good friend in his class and is getting good grades.
Kaeley started middle school and is adjusting to the routines and quick pace of sixth grade! She's involved in Girl Scouts, dance and soccer.
Steven continues to be very busy at work. He continues to follow the Red Sox every move and shares season tickets with friends to the Uconn football games.
I started a new position at work as the Pre-School Coordinator and increased my time at work from 3 to 4 mornings per week. It's very hectic with everyone's schedules to juggle, but as I said earlier, we are trying to not let our lives get tooooo busy!

As I always say....thank you for checking-in and for keeping our little man in your prayers for his continued great health.

9/16 UPDATE We attended the Make A Wish Truck Convoy today (Wishes on Wheels). It was the 8th annual event and our second time participating. We went four years ago while Nicholas was actively in treatment. Today we had another fabulous experience! Our thanks to our driver "Sully" and his daughter, Heather, for the incredible experience we had today! It truly amazes us how kind-hearted and generous people can be to people they have never met before! We hope we made friendships today that will last for many years to come!

Friday, August 10, 2007 11:05 AM CDT

Wow! What a summer we have had! The last entry I posted told all about the big summer "kick-off" with Nicholas' 9th b-day and the Golf Fore the Kids Tournament.

Since then we have spent many lovely days at Sun Valley Resort where Steven's Dad is spending the summer. Nicholas particularly enjoys the kids' activities held occaisionally in the afternoon. Kaeley loves trying to catch critters such as turtles and fish in the pond. Last weekend she had a fun time with her Poppa when he took her for a "spin" in the paddle boat!

We had a super trip to California. We flew in to San Francisco and spent three days trying out the cable cars, street cars, taxis, trains, and even the ferry out to Alcatraz (Nicholas' favorite!) We think we saw just about every square inch of the beautiful city and loved every moment! From San Fran. we spent the next week slowly travelling south down the coastal route. We did the 17 mile drive through Pebble Beach, saw Big Sur and the breathtaking scenery along the way. We saw seals, lighthouses, deer, etc. Hollywood and Venice Beach were fun. Also, we spent a very full day at Disney Land! I could go on and on, because it was a very big Vera Family Adventure, but I'll sum it up by saying it was a trip we will all always remember fondly.

Nicholas just completed 6 days at Paul Newman's Hole in the Wall Gang Camp in nearby Ashford, CT. He loved his time there and made many wonderful memories and met fabulous people. His counselors were amazing! While he was there David Blaine and Paul Newman visited! Kaeley is excited to be able to spend her final week of the summer at the same camp for sibling week! (I think Nicholas wants to sneak into her suitcase!)

I know that some of Nicholas' new-found friends may check in to this site and I want to thank them for giving our son the experience of a lifetime!

Finally, before closing, I would like to ask for everyone to keep Jacob Osit and his family in your prayers. We met the Osit Family nearly 5 years ago when Nicholas first entered treatment. Steven went on to assist Jacob's Dad with the GFTK tournament each year. Jacob continues his battle and is always in our thoughts and prayers.

8/23 Jacob Aaron Osit received his angel wings this morning. Please keep his family in your prayers.
Thank you for checking in on us.

Thursday, June 28, 2007 9:47 PM CDT

HAPPY 9TH BIRTHDAY NICHOLAS!!!!

Today was an incredible day! Nicholas celebrated turning 9 in grand style! We saw most of our friends and loved ones at the Golf Fore the Kids tournament!
We had family come to the tournament from Mass.,Florida, Pennsylvania, Virginia and of course Connecticut. Friends travelled from as far away as South Carolina to be with us on this special day.
The golfers were blessed with rain-free skies despite a forecast of inevitible severe thunderstorms! (Yes, we know we have angels watching over us!)
The day started with presents in Mommy and Daddy's room (which is tradition in our house!) Then things really got into high-gear quickly as we all left the house for the tournament!
The kiddos all used squirt guns and bubbles to send the golfers off to the course! This is always a fun and awesome scene...250 golfers heading off in carts all at once!
Shortly after the golfers' departure we left the course for Nicholas' swim lesson. Then off to Wooster Street Pizza for a b-day luncheon with my sister, her children, my mother and my aunt.
We all returned to the course for the afternoon return of golfers and the raffle/auction and dinner.
I can not even begin to describe the emotions in that room today!
After the tournament Nicholas was presented with a bike from all of his grandparents which was probably the highlight of his day!
Both children konked out shortly after we got home which is what I am about to do! Before I do fall off to sleep I will say my prayers of thanks for our blessings of health and wonderful people in our lives. Of course I will also pray that others touched by this awful disease experience the same joys and blessings.
Thank you for checking in.

Friday, June 1, 2007 6:03 PM CDT

Today was Nicholas' semi-annual check-up with Dr. Altman at CCMC. Everything looks great! Nicholas grew 1 inch since December and is up to 55.5 lbs. He had a chest x-ray which we will hear about next week, but everything else looked super. Dr. Altman said the plan is to do no further MRI tests unless there is something to be suspicious about.

This week was also full of discussion about some recent dental concerns that were brought to our attention during a routine cleaning at the end of April. At that time our family dentist saw a cavity in one of Nicholas' baby molars. The dentist tried to get x-rays, but Nicholas grew too anxious and so no x-rays were obtained. Our dentist referred us to another dentist who deals with challenging cases! (us...challenging???!!!) Nicholas was seen and was able to only tolerate x-rays on the front teeth...not where the area of concern is. Therefore, he suggested a treatment plan of having Nicholas sedated in the O.R., getting x-rays and then having the tooth with the cavity removed. He would also have all of his other baby molars capped with silver. Sound extreme?? It did to us too, but the dentist explained that Nicholas has very slow dental development and could likely need more work on those other teeth before they were to fall out. To avoid the trauma of repeated hospital visits, why not do it all at once???

Well, after sleeping on all of this (barely) for one night, it occurred to me that all of the dental work would be metal and perhaps not good for the MRI tests that Nicholas could possibly need in the future if a concern does come up. (okay...so now I see that we are a touch challenging!!!) After lengthy discussions with an MRI expert and Dr. Altman, I learned that metal, while likely safe in the MRI, can cause distortion in the images, which we can not accept. I also determined that I was really not comfortable having Nicholas have so much work without a second opinion.

So, that leads us to this week. Thursday I brought Nicholas to a Pediatric Dentist in East Longmeadow, MA who was recommended by a nurse we know. The experience was incredible! Nicholas was actually grinning ear-to-ear the whole time he was there! The doctor is a young woman who really just had a magic way with him. Her assistant took Nicholas away from me to another room and when they came back a few minutes later HE announced that they got x-rays! The doctor was then able to truly see what work needed to be done, which is extensive, but she feels that it can all be done in her office in four separate visits, using simple laughing gas. Further, she is comfortable using non-metal composite so we will not have the MRI issues, should we need to ever do one again.
If, however, Nicholas ends up being unable to get through a procedure in the office, this doctor will proceed with the plan in the O.R. under sedation. I am extremely hopeful that this won't be necessary!
The first of four appointments will be on June 25th, so keep your fingers crossed that he has an easy go of it! He deserves it!

Thanks for checking in and bearing with me as I explain all of this. As I have said before, I use this page as a journal for myself to keep track of things. As time passes there is so much that we do forget and some day Nicholas may want to know all of what he went through.
I count my blessings each and every day. Today I am most thankful that this entry is ninety percent about dental issues and the rest is about a positive outcome in the clinic. Teeth we can fix, no matter how challenging it may be!
Please continue to pray for those children who are still fighting Childhood Cancer.

6/8 UPDATE: Chest X-ray results are in and it was clear!

Tuesday, April 10, 2007 6:52 AM CDT

Hello and Happy Spring!

It's been a while since I've posted an update!
Nicholas remains healthy and happy and we count our blessings every day. (His last MRI was on Feb. 6th and it was clear!)
He just began his final marking period of second grade and is doing very well in school...especially enjoying math!
He continues to be in cub scouts and has recently started taking piano lessons in our home with Steven!
I must say, however, that he prefers the non-structured things the most! As soon as we get home from the bus stop he drops his backpack and runs outside to play!
Kaeley is wrapping up her elementary school experience in June (where did the time go?). She is still involved in Girl Scouts, Irish Step dancing, chorus, plays the flute for the school band and was on many committees in school this year (newsletter, yearbook, etc.)
Steven is busy, as usual with work and as I said, he is taking piano lessons!
I am nearing the end of my second year of teaching 4 year old pre-school 3 mornings a week. I really enjoy planning things for them to prepare them for kindergarden! It's such a great age!

The Golf Fore the Kids Tournament will be held on Nicholas' 9th b-day (June 28th)! Hope to see you there! For more info. see link below!

That's it from the Vera Family for now! Thanks for checking in and as always, thank you for keeping Nicholas in your thoughts and prayers for his continued good health!

Tuesday, April 10, 2007 6:52 AM CDT

Hello and Happy Spring!

It's been a while since I've posted an update!
Nicholas remains healthy and happy and we count our blessings every day. (His last MRI was on Feb. 6th and it was clear!)
He just began his final marking period of second grade and is doing very well in school...especially enjoying math!
He continues to be in cub scouts and has recently started taking piano lessons in our home with Steven!
I must say, however, that he prefers the non-structured things the most! As soon as we get home from the bus stop he drops his backpack and runs outside to play!
Kaeley is wrapping up her elementary school experience in June (where did the time go?). She is still involved in Girl Scouts, Irish Step dancing, chorus, plays the flute for the school band and was on many committees in school this year (newsletter, yearbook, etc.)
Steven is busy, as usual with work and as I said, he is taking piano lessons!
I am nearing the end of my second year of teaching 4 year old pre-school 3 mornings a week. I really enjoy planning things for them to prepare them for kindergarden! it's such a great age!

The Golf Fore the Kids Tournament will be held on Nicholas' 9th b-day (June 28th)! Hope to see you there! For more info. see link below!

That's it from the Vera Family for now! Thanks for checking in and as always, thank you for keeping Nicholas in your thoughts and prayers for his continued good health!

Sunday, February 18, 2007 12:21 AM CST

Hello~

Nicholas had his MRI on February 6th and all was well! I did attempt to give an extensive update at that time, but after basically re-doing this entire web page, somehow I didn't save it! Due to the frustration of that experience, it has taken me this long to attempt it again! Sorry for the delay!
But, as I said, it was fantastic news! Nicholas' MRI was normal, and his bloodwork was great! His next scheduled clinic appointment will be in June!
We are currently enjoying a long weekend at Camp Sunshine in Maine. Our friends, The Sullivans, are here with us and we are all enjoying a bit of true winter and the children are being kept busy by all of the volunteer staff here!

As always, thank you for checking in. We appreciate you keeping Nicholas in your thoughts and prayers for his continued great health.

Tuesday, December 26, 2006 7:03 AM CST

Happy Holidays!

Our celebrations began on the 23rd in Brookfield with my parents, sister, brother-in-law and their two children. Then we came home in the evening of Christmas Eve and set up cookies for Santa, turned on all of our decorations and enjoyed wonderful time together just the four of us. Christmas morning was fabulous. Steven and I just marveled at our many blessings, watching the children just be carefree kids all day long.

Last Thursday, Nicholas had his check-up at the clinic which went well. Dr. Altman thinks he looks great. He recently hit the 3 year off-treatment milestone!

Nicholas also had a clean chest x-ray at this visit.

Dr. Altman changed gears on us again, however. In our past few visits (which have been every four months), we have noticed that he is inconsistent in what plan he'd suggest for follow-up testing. Back in April he clearly told us that we would do no further MRI scans unless we saw something that concerned us. He stuck with that mind set in August, but surprised us all by requesting bloodwork out-of -the blue which was very upsetting to Nicholas. (The chemo. Nicholas had should only have had an impact on his counts during and immediately following treatment. This far out the blood should be normal....which it was.)

This visit, Dr. Altman began to request bloodwork again and I had to remind him that we did it in August and it was fine. It is not necessary to keep putting Nicholas through that, so we didn't. Here comes the real "switching gears"...Dr. Altman now wants Nicholas to have an MRI despite everything looking great and despite MANY discussions that his original tumor site was so superficial we would most likely see it before a scan would show anything.

The clinic is such a busy place and now we are not there every week for Dr. Altman to be as fresh about our discussions from one to the next. When I reminded him of our previous discussions he referred to the "protocol" for Nicholas' treatment and said that it's best to follow protocol. (So he has documentation of doing a scan for medical records???)

Steven and I both were comfortable with doing no further scans unless something worried us or the doctors, and we keep a very close eye on the original site. (Which was a point of view Dr. Altman shared with us for a long time.) Now, however, that Dr. Altman has suggested the scan, we feel we must do it for peace of mind. How can we NOT do it if the doctor suggests it? We just hate putting Nicholas through the anxiety of it and HATE the curveballs of the doctor changing his mind.
It all goes with the territory and I just have to remind myself that Nicholas is doing so well.

Please continue to keep Nicholas in your thoughts and prayers for continued good health.

Best wishes for a Happy, Healthy New Year!

UPDATE: MRI is scheduled for Tuesday, February 6th at 7am. Please pray that all goes well! Also, if you are still checking in on this site, we'd love to hear it! Post a message for Nicholas and I'll be sure to have him read it!
I'll update after the test.

Tuesday, December 26, 2006 7:03 AM CST

Monday, August 28, 2006 8:28 PM CDT

It has been so long since my last entry! I'll start by saying that all is well! Nicholas had a check-up earlier this month and Dr. Altman was pleased with how Nicholas is doing. Bloodwork was done (a finger poke) and urine checked and both were normal. He also had another chest x-ray which was also normal.
While life has gotten back to normal over the last few years, my stress level and anxiety really peeks just prior to our check-ups. I was especially anxious prior to this exam (for no real specific reason). So, when results came back fine, I really fell apart. Fortunately the next day we left for the Outer Banks and spent some really fun family time together with peace of mind.
As I type this to you I feel so blessed for this news which I can share with you. I wish the same were true for our friends the Osits, our partners in the Golf Fore The Kids tournament. Unfortunately, their son Jacob is in another challenging battle with recurrent neuroblastoma. I ask that while you remember Nicholas in your prayers, you also pray for Jacob and his family.

Peace to you and your loved ones and thanks for your care and prayers!

Wednesday, April 26, 2006 3:38 PM CDT

Hello Again!

Things continue to run smoothly! Nicholas had a visit to the clinic last week for his regular check-up. He is now going every four months for a physical exam and a chest x-ray. At this visit Dr. Altman stated that he is okay with us not planning to do any MRIs from now on unless something gives us reason to worry.

This time we noticed that our little boy is less afraid of the clinic. He wasn't happy when I told him that we were going, and the tears flowed. However, once we were in the door he was better and even a bit on the outgoing side!!

Nicholas is doing very well in school, but is ready for summer vacation! School days are just "too long" for him and "there is just too much work"! He decided not to play baseball this season, so instead he's thinking about Karate and perhaps joining a drawing camp this summer.

The Golf Fore the Kids tournament is being planned as well as the second annual Mini Golf Fore the Kids tournament! (See link below.)

Kaeley continues to be a busy bee with Girl Scouts, softball, dance and school. She is also looking forward to summer and will be going to Girl Scout camp for two sessions!

On a final note, Steven and I commented after each of the last few clinic visits that the hospital is filled with new little ones fighting cancer. We know that so many people continue to pray for Nicholas' well-being and we are so very grateful...KEEP THE PRAYERS FLOWING!!! Please take a moment to pray for an end to Childhood Cancer so that one day the clinic will be JUST for healthy children returning for check-ups.

Tuesday, December 13, 2005 5:37 PM CST

Hello and Happy Holidays to all of our caring friends and family!
Great news to share!!!!
Nicholas had his quarterly check-up today and all was fantastic!! He had a clean chest x-ray too!
Dr. Altman was very pleased especially since Nicholas has been off-treatment for 2 years!!! It is a wonderful milestone.
That is the BEST Christmas present we could possibly be given.
May you and your family enjoy the blessings of togetherness and good health in the upcoming new year!
Thank you for continuing to pray for Nicholas' continued GREAT health!

Wednesday, October 12, 2005 12:44 AM CDT

I HAVE GREAT NEWS!!!! ANOTHER CLEAR MRI!!!!!
Yesterday Nicholas had his annual MRI and the results are in and it was clear!
He continues to grow and thrive which continues to be a great blessing to us.
He loves first grade and has adjusted well to being in school all day like his sister! The first week was rough because he was so tired when he got home each day. He was so used to having down time to relax, play with his cars, etc. The life of a first grader is much more demanding!! But, as I said, he has adjusted very well and truly loves school.
He has been playing soccer which is fun, but he is very nervous about getting hurt. It didn't help that he got a ball kicked right in his face at his very first game. He had no lasting physical injury from that, but it did cause him to be very afraid of the ball. Who could blame him???
He also joined Tiger scouts and is loving that and the special time working on earning badges with his Dad.

The rest of us are all well. I think we all miss the more laid back days of summer vacation, but we are all grateful to be able to do all that comes our way during the school year.

Thank you for keeping our brave little guy in your continued prayers. Thank you for checking in.
Enjoy the crisp, busy days of Fall!

Sunday, June 12, 2005 4:21 PM CDT

Hello Again~
For those of you who have checked in recently, bare with me as some of this may be a repeat for you. Last week when I sat down to post an entry after Nicholas' clinic visit, I initially typed a rather loooong entry filling everyone in on lots of news in the Vera house. Just as I went to officially enter it, POOOOF!...the screen went blank and all was lost. I was out of time, so I just typed a quick entry to let everyone know that our visit to the clinic went well.
Now, with the family gone to Kaeley's All Star softball try-outs, I have the time to fill you all in...here it goes!

For starters, yes, Nicholas' clinic visit went well. He had an exam and chest x-ray and everything looks great. Dr. Altman seems to have had a change of heart about future testing, however. You may recall that in Febraury he said that we would only do an MRI if something looked or felt out of sorts in the initial tumor site. During this visit he explained that he would like for Nicholas to have an MRI in October which will be one year since his last MRI. He definetly was not concerned about anything, rather, he just thinks that it's best to do the full testing annually for a few more years for added peace of mind. Now, I am all for PEACE OF MIND, but with Nicholas' severe anxiety relating to any medical procedures, my heart is already heavy about having to put him through that. He will have to have emla cream on the back of his hands (to numb the area for IV sedation). I'll try not to get tooo nerved-up about that now seeing that it's only June.

Speaking of the month of June, what a busy month for all of the Veras!!! Baseball and softball are winding down soon with parties and, as I mentioned, ALL STAR try-outs for Kaeley. School is winding down, too, with Kaeley in a play this week and Nicholas getting ready for first grade and of course more parties!
Steven is extremely busy at work. He is on the road a lot in the new Regional position he started back in March. His travels are all within Mass., so he seldom has an overnight, but he is always running and often gets home quite late. It has made it challenging for him to be at the childrens' games and even more difficult to devote a lot of time to the Golf Fore the Kids Tournament which he co-chairs. Even so, he has managed to get vendors, sponsors and golfers involved and it is certain to be a success again this year.
I am also finding June to be a busy month! I continue to be room Mom at school, I've been wrapping up some things for the Parent Resource Center in the school's library, and planting the veggies in my home garden. I've also accepted a nursery school teaching position at the Vernon YMCA for next school year, so I've been having fun planning the year's curriculum. As a side-kick to the Golf Tournament, this year I have put together a Mini Golf Event for the same day. I am expecting 65-70 golfers for the fun! It will be a busy day, but I really wanted a way to involve our children and many of my wonderful friends who offer to do something each year for the larger event. Kaeley and Nicholas are really feeling proud that they are my little co-chair-people! They are learning so much about GIVING of themselves. That has been my goal, so it won't matter how much money the event raises, but rather the lessons learned and the good feelings by all who get to be some part of the day.
Now, I have covered the Vera Family News! I thank you all for checking in and I hope to connect with all of you over the summer!

Wednesday, June 8, 2005 10:22 AM CDT

Hello All~
Yesterday Nicholas had his quarterly check-up with Dr. Altman and a chest x-ray. Everything looks great!
We will return in October for an exam, chest x-ray, MRI with sedation and bloodwork (while sedated).
I will update this page again soon as our brave boy is turning 7 later this month!!!
Thanks for checking in!

Sunday, April 17, 2005 6:20 PM CDT

Once again it has been a LONG time since my last entry.

Nicholas is doing terrific and continues to thrive in kindergarten. He is growing tall and strong which is a joy and a blessing to us.

He has just started baseball and quickly overcame being intimidated by the pitching machine! He is a peanut compared to the rest of the kiddos on his team, but he seems to have a love of the game and a desire to do well.

We all just returned home from a 10 day trip to Florida. We started out by returning to Give Kids the World in Kissimmee which was the resort where we stayed for Nicholas' Make A Wish trip last year. We had originally planned to only visit there one day, but had so much fun we stayed at a local hotel two nights and visited GKTW three days in a row! There are all kinds of fun things to do such as swim in the pool, eat all of the ice cream you could ever want, play arcade games, mini golf, etc. The children even participated in a fishing derby where Nicholas earned the title KING OF THE REEF and Kaeley was crowned BEST FISHER!
We then travelled south-west to Ft. Myers where we visited Steven's father. We enjoyed our time with him and the lovely weather. Steven was able to golf with his Dad while the kids and I took a two-day trip to visit my friend Sheri and her family in Port St. Lucie (3 hours east of Ft. Myers). Yes, it was a lot of criss-crossing the state, but we saw a lot in our travels...orange groves, cattle ranches, alligators and more! When we reunited with Steven we took day-trips from Ft. Myers to Sanibel and Captiva where we enjoyed the beaches, collected shells and a photographed a lighthouse. We went to an awesome little restaurant called the Island Cow! Another day we travelled to Indian territory and saw over 100 alligators wild along the side of the roads, took an airboat ride through the everglades and dined at an Indian tribe's restaurant where Steven and I tried frog's legs!

We returned home to get back to the school routine for only one week and now it is school's April vacation. Kaeley has taken a trip with my mother to Seattle to visit my sister and her family. Nicholas is up in Dracut, MA visiting his Aunt Carol and having a ball with his cousins!

That's about all of the family news for now.
Thank you for checking in and keeping our special little boy in your thoughts and prayers!

Monday, January 24, 2005 6:01 PM CST

Hello To All~

Happy New Year!

My last entry was in October, so I have a bit of catching up to do. Most importantly, Nicholas is GREAT. We have not been to the doctor's since October, but will go for a check-up on February 1st. I believe that this appointment will be a physical exam only. At the most, Nicholas will have a chest x-ray. We will discuss the follow-up plans now that the milestone of one year off-treatment has passed.

School-wise Nicholas is doing fantastic. He loves school, especially gym and learning to read. (Both of the kiddos have the wonderful love of books!) He is quite the social butterfly which is great to see. I am very involved in his classroom, so I get to see him interact with the other children. He fits in perfectly and seems to be well-liked. Thankfully he's had no upsetting comments or questions about his scar.

Kaeley just turned 9 and is growing tall. She is ALWAYS busy. She takes Irish Step Dancing, is in Brownies and plays soccer and softball in season. She excells in school and loves being a big help to her teacher. In the past two weeks I have taught her to make latch hook rugs and to knit. Crafty projects are her favorites!

Steven and I enjoyed our trip to the Florida Keys. The children had a super time with my parents while we were away. When can we go again???

Actually, we are hoping to ALL get to Florida sometime in the next 3 months to visit Steven's Dad and my friend Sheri who moved there in the fall.

Thanks for checking in!

Best wishes for a Happy and Healthy 2005.
I will post an entry update after our Febraury 1st appointment.

*****UPDATE*****
Nicholas' February 1st visit went well. Dr. Altman said that he looks great, has gained more weight and is getting tall! Dr. Altman even said that he wished he had Nicholas' full head of hair!!!
The little guy had a chest x-ray and it was clear! He was really cute about it...leading ME into the x-ray area!
We discussed how we will follow-up now that Nicholas is beyond one year off-treatment. We will see Dr. Altman every 4 months rather than every three months. Nicholas will not have an MRI again unless we develop a concern about something we see with the naked eye. Dr. A. continues to feel that the original tumor site was so superficial that we would see a problem probably before an MRI would even pick it up.
We feel truly blessed for each day, especially days full of good news!
Thanks for checking in!

Friday, October 22, 2004 8:30 AM CDT

GREAT NEWS!!!!

Nicholas had his MRI yesterday and it was clear!!!

We will go again in January for a chest x-ray and check-up. His next MRI will be in 6 months.

Thank you for checking in and keeping Nicholas in your prayers!

***Steven and I are going on a long-overdue and much needed trip to the Florida Keys in November. This trip is to celebrate our 10th anniversary which passed in September. I couldn't leave then because I needed to be sure Nicholas settled in to Kindergarten and that we got another batch of clear tests. Now that we have, we are once again counting our blessings AND counting the days until we go away!
The children will be with my parents for 6 days enjoying many fun activities that "Gee and Pa" have planned to keep the grandchildren entertained!
Kaeley is very excited. Nicholas is too, but he wants me to join them! I am sure he will do fine.
I'll feel lost without having to cook, clean and cut up food at dinner time! Most of all, I am sure I will miss having my 6 year old Prince Charming kiss me on the cheek at 7am to wake me up! (okay, maybe not the 7am part!!!!)

Tuesday, September 21, 2004 8:46 PM CDT

Hello and Happy Autumn to All!

The Veras enjoyed a wonderful summer of sunshine, fun, love and good health!!!!!

In June Nicholas graduated from pre-school and bid farewell to his beloved teachers, Mrs. Pandit and Mrs. Terri who had been so dear to him for the past two school years. Although they will no longer teach Nicholas in class, both will always be special friends to our family.

June was also the month for the Golf Fore the Kids Tournament which raised $48,000 for CCMC and the Jimmy Fund!! Nicholas was really able to enjoy the festivities of the day, especially meeting his Chemo Angel, "Angel Susan". The golf tournament was actually the begining of a long weekend of celebrations because on the 28th of June Nicholas turned six years old!

July and August were full of fun as the children and I kept our schedules packed! Both kiddos took swim lessons and enjoyed going to the pool just about every day! We took off for many daytrips to the beach, Look Park, Lake Compounce, Magic Wings Butterfly Conservatory, etc. We also made weekly trips to the other side of CT to see my grandmother who lives in a nursing home. The children know that her health is failing, and they made me so proud by often suggesting that we "go see Grandma" on beautifully sunny summer days. We also enjoyed having my other grandmother stay with us for a few days.

The last week of summer we took a family vacation to Cape Cod which was really relaxing. Once again the children enjoyed pool time at the hotel. Both children learned how to fly kites at the beach...I am sure I will ALWAYS remember those scenes.

Although we were SO VERY busy, I feel that I certainly did savor every minute. I kept thinking what a difference a year makes. This summer nothing was off limits. We could enjoy the bright sunshine, everyone felt well and had the endurance to participate in things of their choosing. I know I will never take those things for granted again.

Well, my favorite time of the year did have to come to an end. Once again I cried when we put Kaeley on the bus. Steven stayed home with me on the first day of school to fish me out of the puddle I cried when Nicholas got on the bus for the first time. He has had a remarkable transition and loves his teacher and his "new school".

He will be having a check-up the first week in October and testing (MRI and chest x-ray) on Oct. 21st. I will post an update after each of those days.

Thank you for keeping him in your thoughts and prayers.

Friday, June 11, 2004 1:19 PM CDT

Hello Everyone~

!!!!!!!!!!!!!Great News!!!!!!!!!!!!

Nicholas had his quarterly check up on Monday and all is WELL!

Today he graduated from pre-school (Yes, for real...last year's graduation was just for practice!). He loved every moment of the ceremony and gobbled up the treats afterward!

I shed a few tears leaving the YMCA for the last time. The staff there has been so very good to us. But, it is time to enjoy my favorite time of the year with the children...summer vacation! So many mothers complain about the "long summer" and worry about keeping their children busy. I cherish every moment and only worry about how to fit in all of the fun things I want to do with them!

Thank you for looking in to see what's new!

Tuesday, June 1, 2004 6:06 PM CDT

Hello everyone!

Nicholas graduates from pre-school on Friday, June 11th. He's very excited for summer to officially arrive so that we can go to the beach! Last summer we only experienced a bit of late-day beach time because Nicholas could not be out in the hot sun. So, the sand and sun are beckonning my little guy!

The Golf Fore The Kids Tournament is right around the corner on June 24th. We hope that you've taken a moment to check out the website: www.golfforethekids.com. If you golf, hurry and register because spots are filling fast! We are thrilled with the amazing support from our family, friends and Steven's co-workers.

On the subject of amazing support, I would like to take a moment to share a story with everyone. Midway through Nicholas' treatment last year, an online friend of mine whose son had Rhabdo. told me about an organization called Chemoangels. Chemoangels are people from all over the country who volunteer to spread cheer via cards, small gifts etc. while children undergo treatment. They do not expect anything in return, they are just wonderfully caring people who give freely of themselves. Nicholas was delighted the first time goodies arrived from Angel Susan from Brookfield, Wisconsin. As time went by, regular goodies would come in the mail from this lovely angel who had never met any of us. The joy she brought our family in words of encouragement, friendship and love always amazed me.

This past weekend a gesture of Angel Susan actually took my breath away and brought me to tears. I learned that she has booked a flight and is COMING to the Golf Tornament to support our family and most importantly, to meet OUR angel, Nicholas.

In the last 18 months we have seen love and friendship at it's best. I've shared, (in other sappy entries), how much the outpouring of kindness from our friends and family members has meant to us and how each of you has helped us get through this experience with our heads held high. I thought it was equally important to share how a complete stranger has come to our side and has joined the ranks of dear friends. As I have embraced each of you for all you have done for us, I will embrace Angel Susan on June 24th at the golf tournament!

Sunday, May 9, 2004 2:56 PM CDT

Greetings and Happy Mother's Day to All!

We had a super Mother's Day weekend at The Hole in the Wall Gang Camp in Ashford, CT! As you may recall, we went to the Family Weekend last year as well and loved every moment. We were surprised to learn that only 2-3 families, including ourselves, were invited to repeat the fun get-a-way. Apparently there is a large number of families who apply each year. Mostly everyone who attended this year were first-timers. We were selected to return because the doctors and nurses felt that Nicholas needed to have a positive experience with many folks from the CCMC community. He certainly did! As a matter of fact, we barely saw him all weekend because he was having so much fun with everyone! When he would pass by on the way to another fun venue I would steal a hug and kiss! The great thing about camp is that there is so much to do and so many adult staff members and volunteers to help.
Kaeley had a ball too! She created many beautiful works of art for her room and made me some lovely Mother's Day presents! She performed on stage for all of the families by singing "My Bonnie Lies Over The Ocean". She loved the applause!
Steven and I worked hard on craft projects most of the weekend, too! With help from the people from the woodshop, we made shelves for the children's rooms, and even a small bookcase for Kaeley! I sponge-painted a frame for a photo that the staff took of our family over the weekend.
We came home with a car load full of fun memorabillia from our fabulous weekend!

Saturday, April 24, 2004 1:08 PM CDT

It has been quite a while since my last entry, however, if you have not yet read about Nicholas' Make A Wish trip, please check my last entry...it was an amazing experience!!!
Nicholas is doing great. He is enjoying school and really loves t-ball! He also takes a fun class on Tuesdays called Fit Kids and his coach tells me he is quite a LEADER!!!!
This past week both children had school vacation and the BIG news is that Nicholas had his first professional haircut in 16 months! For his entire life Nicholas has been terrified to have his hair cut. So, the break from needing haircuts was a bonus for him! When it started to grow in, I would trim around his ears, but it finally grew to the point of needing a pro's help! Nicholas was timid about sitting in the barber chair, but after it was done he was SOOOO proud! Yesterday he insisted that I put gel in his hair to "spike it" then he danced around pretending to be Elvis (his new idol)!
With rosy cheeks and his beautiful new head of hair, he is really looking terrific and so HEALTHY!
Please continue to remember him in your prayers that he may go on enjoying life and experiencing good health!

Sunday, March 21, 2004 8:37 AM CST

3-24-04 UPDATE:
GREAT NEWS...MRI PERFECTLY NORMAL!!!!!!

3-23-04 UPDATE:
This morning we went to Hartford Hospital for Nicholas to have an MRI. He was sedated and the entire process took about an hour and a half. We do not have results yet, but may hear something preliminary by the end of the day. It could take 3 days to get results. I will post news as soon as we get it. Please pray for it to be GREAT news. I had updated this page on Sunday with info. about the Make A Wish trip. Please read on if you have not already!

3-21-04
We're back from Disney World and OHHHH what a time we had!!!
I can not possibly share every wonderful experience from our trip on this page, but I will hit on the highlights. Get comfy because there were quite a few!!!

First, a gorgeous white limo picked us up on Thursday, March 11th. The children were not expecting to leave until the following Thursday, so it was an even bigger thrill!
Our flight was great and got to Orlando 1/2 hour early!

We were met in the airport by a gentleman named Frank who volunteers for Give Kids the World (more about that later).
Frank was holding a sign with NICHOLAS VERA written in bold rainbow letters all surrounded by colorful Disney stickers!
Frank brought us to our rental car and we were off to the Give Kids the World Village.

GKTW is a fun vacation spot for children who have experienced a life threatening illness and their families. Many organizations such as Make-A-Wish send families there. You can only stay on the property the one time for your wish experience (6 nights) but can return as day visitors anytime in your life once you have been a guest.

There is an arcade, train station, two pools, movie theater, gingerbread castle for breakfast and dinner and an ice cream palace. There is also the Castle of Miracles where Santa and Mrs. Claus visited one night with gifts! We stayed in one of 96 villas on the property which had two bedrooms, two bathrooms, large living room, full kitchen, etc. Each day while we were out gifts were left for the children. It was always a challenge to get Nicholas to leave the village in the mornings to go to parks because he loved GKTW so much! What a problem to have! One night Mayor Clayton (a six-foot tall rabbit) came by our villa to tuck the children in to bed!

We were given many tickets to the theme parks. Nicholas was given a button to wear which gave us all royal treatment everywhere! We had great parking, free stroller rentals, and best of all...front of the line access to every attraction.
At Magic Kingdom, we were also escorted around by one of the cast members to PRIVATELY meet MANY characters including Mickey and Minnie. The children got autographs from anyone you could imagine!
Other parks we visited were: EPCOT, Sea World, Universal Stuidos and Universal Islands of Adventure, and Gatorland. We were offered a Parents Night Out whereby volunteers would watch the children and we'd be sent to a nice restaurant. We didn't want to be without the kiddos, so instead we chose a Family Night Out and were treated to a Pirates Dinner Show. There we were treated like royalty as well!
Many of the parks and the dinner theater took our family photos with neat backgrounds and gave them to us complimentary!
We ALL had a tough time leaving Give Kids the World on our last day. We even shed tears! The emotions were very powerful...Joy from the fun, but sadness from what brought us to that experience. Also, Steven and I were overcome by the reality that there are FIVE THOUSAND new families that stay at GKTW each year. Each family has a story, although each family tries to put that heartache aside while they are there.
We were lucky to be able to extend our vacation for three more days. So, we took off from GKTW to head southwest to Ft. Myers to visit Steven's Dad who just bought a beautiful home there. The weather was even more beautiful! We all enjoyed a visit to the beach, great food and fun time with Poppa!
Every time Steven and I visit Florida we feel strongly that we would love to live there. During this trip we ALL had that strong feeling. We spoke with many locals and looked in many home guides. It may be a pipe dream which will have to wait until retirement, or one of these days we may finally decide we've had enough snow!

For our last night, we returned to Orlando and went back to the Magic Kingdom with our last pass. We went on a few more rides at night which was neat because of the neon lighting.
We watched as Tinkerbell lit up the sky with a stunning fireworks display. Then, at 10:00 pm, Kaeley was selected out of the crowd to be the one to shut off all of the lights on Main Street USA for the electric parade! I've never seen her smile so BIG!!!

Yesterday, before our flight, we enjoyed pool time at our hotel in Orlando and went to Downtown Disney to do some shopping.

Our flight home was fine, and we were met by the same wonderful limo driver with the gorgeous white limo. The children watched a movie and sipped water from champagne glasses on the ride home! What a wonderful end to a fantastic vacation!

Friday, March 5, 2004 8:06 AM CST

Hi Everyone~
Yesterday we went to the CCMC clinic for Nicholas' first quarterly check-up. Originally the plan was for him to have a facial ultrasound of the area and a chest x-ray.

{ I have to back up a bit here.... There are no clear guidelines set for follow-up testing for Stage 1 Group 1 Rhabdo., so this was the plan the Connecticut doctor decided upon after a phone consult with someone from the Children's Oncology Group, a.k.a COG. For my comfort level, I contacted our second opinion doc. in Boston to see what testing he would suggest. HE spoke with someone at the COG as well and the determination was to do a CAT SCAN and chest x-ray. The Boston doc called the Connecticut doc and I got the final word yesterday morning that the plan was to do the CT scan and chest x-ray.}

The last minute decision really proved stressful because Nicholas thought that the tests planned were relatively simple and non-invasive. The CAT SCAN requires an IV injection for a dye and EMLA cream (by now you all know what that means to this little boy).
So, it was not an easy day. The good news is that he got through the chest x-ray fairly easily and it was CLEAR!!!!
However, Nicholas could not get through doing the three minute CT scan even after having the IV line inserted. His anxiety got the better of him and HE made the decision to have the line pulled out and to return another day for an IV and sedation for testing. (Believe me, many people tried to help get him through the test yesterday, but he was a determined young man who stuck to his convictions!) Certainly Steven and I were disappointed that we didn't get the testing behind us yesterday, but we were amazingly proud of how Nicholas handled himself in the radiology department.
So, now we wait to hear from the scheduling staff to learn when the test and sedation will take place.
Because sedation is now required, the test of choice is an MRI which is longer but does not expose him to radiation. I will keep this page updated when I hear when the test will be. It may be M,T, or W of next week or it will have to be after we get home from Nicholas' Make A Wish trip.
One last note: We spoke with the ultrasound tech. and it is not advisable to perform a facial ultrasound based on the location of Nicholas' scar and the proximity to his eye.
Thanks for all of the calls, cards, prayers and good thoughts! We love having you in our corner!

Thursday, February 26, 2004 2:30 PM CST

Greetings!
If you did not get a chance to read my last entry, check back because you'll smile!

Our Make A Wish trip is two weeks from today! It's crazy to think how fast the time has flown by since we first started to plan it!
The limo will be here at 9am on March 11th to bring us to the airport! We have a wonderful neighbor who will be caring for our house, plants, fish and birds while we are away. YES, I said birdSSSSS. We are adopting a new parakeet tonight! Thompson is going to be ten years old next week, so when the opportunity presented itself for us to have a one year old fellow, we thought it was a good idea. The birds will live separately because Thompson is very set in his ways after all of these years!

Yesterday we attended the unveiling ceremony of the new CURE KIDS CANCER license plate at the state capitol building in Hartford. The proceeds from sales will be evenly divided between the oncology units at CCMC and Yale. For more information visit www.dmvct.org and look under LATEST NEWS. I encourage everyone to take a peek, it's cute and for a great cause!

Please notice that I have added a link to the GOLF FORE THE KIDS webpage. Please mark your calendars for JUNE 24th. We look forward to seeing you there!

Next Thursday Nicholas has his quarterly testing. I will update this page after our appointments.

Monday, February 9, 2004 9:23 AM CST

Greetings!
It has been a while since my last entry as we have been adjusting to being off treatment and enjoying it of course!
Nicholas is doing great! He has sweet rosy cheeks and his hair is growing in nicely. It doesn't seem to be any different than it was before, still medium brown and straight. His eyelashes are soooo long and his eyebrows are coming back fast now.
He has had a lot of separation anxiety recently when it is time to go to school or even birthday parties. Usually once he gets involved in an activity he is fine. We are sure that it is just a phase, but it's really tough some days.
The countdown has begun until Nicholas' Make A Wish trip to Disney! We leave on March 11th. We are all getting excited. Nicholas can't wait to be where it is warm! He wants to be sure to get to the beach while we are in Florida! I think everyone has had enough of this frigid winter!
Nicholas' next doctor appointment is just before our trip. He will have a check-up, facial ultrasound and a chest x-ray.
More news soon!
2/10 UPDATE:
Yesterday after school one of the other mothers pulled me aside to tell me that her son had his hair cut crew-style to be just like Nicholas! My little trendsetter!!! It surely made my heart happy to hear that!!!
Also, for those who are interested, you can be automatically notified when I post an update on this page. Registration is free and easy at www.changenotes.com. You will receive an e-mail when we post something new. Check it out!
2/15 A message to our neighbors:
If you saw the police car in our driveway last night DO NOT FRET!!! Steven and I were out for Valentine's Day and Nicholas missed us, so while the babysitter was busy with Kaeley, Nicholas dialed 911! When he did not respond to the operator and hung up, the dispatcher called back and the babysitter learned of his shenanigan. A little while later a police officer arrived at our house to be sure everything was okay. Nicholas certainly learned from the experience and told the whole story to me this morning on his own. We'll be working on teaching him Mommy's cel phone number over vacation before Steven and I go on another date!

Friday, January 16, 2004 4:00 PM CST

Hi!
Nicholas had his four week check-up yesterday. He was SOOOOOOO upset when he learned that it was "doctor day" and cried from home all the way to Hartford. Once he saw that no one was coming toward him with a needle he was fine. We opted not to have him get the booster shot for the flu vaccine. The latest data shows that the vaccine is only effective for 30% of cases. Plus, Nicholas' immune system is recovering wonderfully and he had the first dose which will still provide him with some protection. It was more important that Nicholas had a positive experience at the clinic because we will need to go there for check-ups until he is an adult.
Doctor Altman wants to see him again in 8 weeks.
I will continue to update this page periodically and check it just about daily for messages. Keep in touch!

Thursday, January 8, 2004 3:55 PM CST

HAPPY NEW YEAR!!!!
Greetings from the Vera family! We all hope that your holidays were filled with joy and that you took the time during the craziness of the season to enjoy the small blessings in your lives. We sure did!
We "kicked-off" Christmas celebrations with a fun day at Carol's house (Steven's sister) the weekend before the actual holiday. The children had been with Carol, Joe and the cousins for a few days and had baked cookies galore!
A few days later we enjoyed a visit from my sister, Stacy and her family who were in from Seattle.
Christmas Eve we spent at home just the four of us. We really savored the evening and enjoyed prepping the cookie tray for Santa and putting out oats for the reindeer!
Christmas morning we were all up early and had a few hours at home in front of the tree. By 11:00 am we were on the road to my folk's house in Brookfield. We had a super day full of excitement with everyone home for the holiday including the great grandparents!
At 6:22pm we pulled out of the driveway and were off to Myrtle Beach, South Carolina! We drove all night with only one short nap in a rest area. We arrived in Myrtle Beach at 9:00 am.
Our week was full of exciting activities and beautiful weather! The children had a super time in the indoor pool and playing on the beach.
Nicholas has been feeling great and is so full of energy! His hair is growing in quickly now and he is so proud of himself for many reasons. He is back to sleeping in his own room after being in our room for over a year. He loves not having a port-a-cath and we can tell he has a whole new outlook about everything.
He still asks if "today is 'doctor day'", and dreads clinic visits, but we don't blame him after all he has been through.
He has his 4 week check up on Thursday, January 15th which should be easy for him except for his flu shot booster. I will update this page after that visit.
Until then, keep your messages coming! Nicholas still sits on my lap every time I sign on the computer to see who we've heard from!

Friday, December 19, 2003 4:54 PM CST

Season's Greetings from the Vera Family~
Well, we have the tree in the front yard lit, but have not been able to schedule an official lighting celebration. The weather has not been cooperating, and on the few nice days we've had, one or the other of the children have been sick with colds. Now the forecast for the weekend looks great, but the children are off to Dracut, Ma. to bake Christmas cookies with their Aunt Carol!
We hope to still follow through with plans for a gathering in the yard to celebrate Nicholas, but who knows when??? We'll be in touch!
Nicholas had a doctor's appointment yesterday and his blood counts were super! He was not happy to have a finger poked and squeezed, but he got through that and a flu shot like a little trooper!
Best wishes to all Nicholas fans for a happy and healthy 2004!
Keep peeking in for more updates and info. about our celebration!

Friday, December 12, 2003 10:05 AM CST

THE TREE HAS LIGHTS!!!!!
This morning the tree company came and put the lights on the tree! It is going to look super at night. I promise to let everyone know the date of our celebration by the end of the day today. I will add a note to the bottom of this page when we figure out what is going to work best.
It has been quite a project getting the lights and supplies such as cords for the tree...I HAD NO IDEA HOW CRAZY THIS IDEA WAS UNTIL TODAY!!!!
I had purchased 5 boxes of lights which was 125 feet. Then yesterday I started to get nervous that there wouldn't be enough, so I trecked back to Walmart and bought 6 more boxes. We were sure we had plenty. WELL....today we needed 9 more boxes to get the job done! We also needed 4 more extension cords! It took two men 2 1/2 hours to get the tree done. Nicholas helped and loved every single moment!
Hope that everyone has the chance to see the tree during the holidays. More news on the official tree lighting celebration later......

Monday, December 8, 2003 6:02 PM CST

Today was Nicholas' surgery to remove the port-a-cath. We left the house at 5:45 am and Nicholas did great on the way to the hospital. We were told to arrive by 6:15 am. He was somewhat excited about the thought of being able to drive a Power Wheels vehicle into the O.R.
Surgery was scheduled for 7:45, so there was time to pass, which did not work in our favor. The anxiety began to mount and Nicholas required his comfort cloth up to his mouth. I attempted to give him a dose of Verced which causes temporary amnesia. As I went to put it to his lips the nurse came over in an attempt to help and pinched his nose. He spit the medicine out and his anxiety grew worse. I was upset with the nurse, but she had been wonderful up until this point and did mean to help.
The trouble was that Nicholas has a very set way that he needs for almost everything to be done and most of the O.R. staff do not know him. Despite all of our efforts to coach them ahead of time, things were a bit rocky.
Steven carried him into the O.R., (Nicholas refused the Power Wheels), and stayed with him until he fell asleep. He put up quite a fight, but within moments he was out.
In about one hour Dr. Hight came out to tell us that everything went well. He was able to use the initial incision area, so Nicholas will only have the one small scar on his chest.
We went in to the recovery room where we found him to be very combative at first. He settled pretty quickly and slept in my arms in the rocking chair.
We were discharged at around 11:00 and he has been cuddled up here at home ever since.
(We did have blood counts done while he was sedated and they came back great!)
Thank you all for the prayers and well-wishes.
I will post more soon.

Wednesday, December 3, 2003 4:46 PM CST

CT SCAN CLEAR!!!!!
BONE SCAN CLEAR!!!!!
LAST CHEMO. OVER!!!!!!
VERA FAMILY HIBERNATING FOR A WELL DESERVED WINTER'S NAP!!!!!!

Okay, just kidding about the last part! I'll stay up a few minutes longer to tell about today's events!

It was a very long day, but we did get everything accomplished so that Nicholas does not have to have his port accessed again!
We started in the clinic at 9:30. He had his port accessed after 10:30 (no one seemed to know why we had to wait so long.) Fortunately I always check the meds. before they are administered. Today an error was made and he almost received Vincristine which is a chemo. drug that he finished with last week. At this point in the morning we just needed to have the port accessed and have blood drawn.
At 11:00 am we went to Harford Hospital where Nicholas received an injection (into the tube now hanging from the port site) of a dye for the bone scan. That dye needs to circulate for two hours, so we returned to CCMC for the CT Scan. Another dye was injected and Nicholas successfully completed this scan without sedation! It took every ounce of his courage to get through it, but he did it. He was allowed to keep his cloth up to his mouth. I sat right on the table as it went in and out of the tube and stroked his head. Steven stayed at his feet and held his hand when it was allowed. Nicholas was trembling and obviously petrified. I came close to stopping the procedure, but just before I did, Nicholas settled down a bit and got through it.
After lots of hugs, kisses and cheers we moved on.
Back at the clinic we met up with my Dad who came to support us all. We had a brief time to relax in the lounge.
At 1:00 we returned to Hartford Hospital for the bone scan. For this test Nicholas was fully sedated. It takes 40 minutes and requires the patient to hold completely still while a machine hovers right over your body. We were able to be with him while he fell asleep which took less that 3 seconds. It certainly was not any easier this time for Steven and I to see Nicholas sedated. We both cried when we left the room.
Historically Nicholas wakes from sedation in a very combative, weepy state. Today he awoke completely comfortable, and just a bit groggy.
We received the results right away that the bone scan was clear.
We returned to the clinic where we learned that the CT SCAN was clear and the bloodwork was excellent. So, Nicholas received an antinausea med. via IV and his last dose of chemo. (actinomycin). It was finally over.
Just before we left the hospital I spoke with the nurse we had today. She said that Dr. Altman wants Nicholas to have counts drawn prior to surgery. Nicholas' surgery is on Monday. His counts were fantastic today. The med. he received today does cause a drop in counts, but not for two weeks. Plus, the whole point of having the marathon day we had today was to be done with accessing the port. We had previously all discussed the necessity for doing counts in two weeks. Dr. Altman was not around at the time and he leaves for a conference tomorrow through the middle of next week. Soooo, in good conscience I will call another clinic doctor tomorrow to discuss the matter, but I am going to advocate for Nicholas that we go forth as was previously planned.
In any event, a promise is a promise, so there will be no more use of the port.
I need to get info. out to everyone about when we are having the tree lighting. I will know more tomorrow and will get info. out A.S.A.P.
Now I am going to join my family for that long winter's nap!
Thanks for your continued love, prayers and wonderful support.
****A very special thank you goes out to my Mom, Jane who came to our house while we were at the hospital. We came home to the Christmas tree lit, yummy chicken pot pie all prepared and the love of family surrounding us. Thanks Mom!

Wednesday, November 26, 2003 4:24 PM CST

Hi everyone and Happy Thanksgiving~
Today we had a very good day.
Steven spoke with a man who does tree work where Steven is employed. The man said he will come to our house sometime next week! I am so excited! Nicholas will be thrilled to see his truck in our yard!
We also went to the clinic today and Nicholas did great. He received his last dose of Vincristine. He has one more dose of Actinomycin next Weds. and then he's DONE!!!!
After treatment we all went downstairs to the CT scan room. Kaeley took a "ride" on the table, through the machine to remind Nicholas that it doesn't hurt to have a CT scan. He is scheduled for his next Weds. as well as a bone scan (under sedation). ***See my last journal entry for more details.***

Once again, I would like to wish everyone a Happy Thanksgiving from our house to yours!

Tuesday, November 25, 2003 8:30 PM CST

Hi~
This is my second entry this week, so please look back to keep up to speed!
Yesterday I spent much of the afternoon on the phone making arrangements with radiology and the clinic for all of Nicholas' tests and his last chemo. It was tricky to schedule it all in one day because things have to go in a certain order and there is a lot of timing involved.
Anethesiology is not available on Thursdays at all, so the whole plan was shifted one day early to Wednesday, Dec. 3rd.
It will be a small miracle if everything goes as scheduled, but for now the plan is this:
9:30 Clinic for access (the FINAL one!!!!) and blood draw.
10:30 Hartford Hospital for Isotope (type of contrast for the bone scan which will go in through the accessed port).
This needs to circulate through his system for two hours prior to the test.
11:30 Back to Children's Hospital for CT scan. (This is where I anticipate a glich in the plan. Nicholas has such severe anxiety that I am unsure if he will be able to do the brief scan without sedation. I have talked with him about it briefly and he knows what to expect because he has done it before. Now, however, he always keeps the cloth to his mouth at the hospital, so we may have a problem.)
12:30 Back to Hartford Hospital for sedation and a 1:00 bone scan.(By the way, these two facilities are within walking distance of eachother.)
After recovery from the sedation we will go back to the clinic to get word about the blood count results. If the counts are good he will receive his final dose of chemo. which will take 25 minutes and likely receive fluids to prevent dehydration.
It will undoubtably be a long day for Nicholas, but everyone is in agreement that it works best for him to avoid additional accesses.
In other news, I heard from the Vernon Fire Chief who said although he would like to help with the tree lighting, he can't. (Liability reasons and if he does it for us it would start everyone in town wanting their tree done, etc.) Needless to say, I am disappointed, but it was worth a try. Put your thinking cap on and if you come up with ANY ideas, please contact me.
Tomorrow Nicholas will have his treatment for this week due to the holiday. I will update this page after that.

Thursday, November 20, 2003 5:12 PM CST

Hi Everyone~
Things went well for Nicholas today at the clinic. I certainly haven't said that very often this past year! He was tearful and did keep his cloth to his mouth, but no gagging or vomiting.
In other developments, Dr. Altman informed us TODAY that Nicholas will need to have a bone scan at the end of treatment. He stated that it is part of the testing suggested in the protocol. I have a copy of the protocol, but we have not followed the testing guidelines to the letter because 1. Nicholas is not enrolled in the clinical trial, and 2. his tumor was so superficial. We were told that too many tests would unnecessarily expose him to radiation. In MANY conversations about the ending of treatment we have discussed testing and only the CT scan has been mentioned. The bone scan was not mentioned by Dr. Grier in Boston on Monday either.
So, this new development threw me for a loop. We have been successfully counting down the number of times the port has to be accessed to give Nicholas the real sense that this is almost over. There are TWO left, and Nicholas knows it. For Nicholas the bone scan requires him to be sedated due to his anxiety. I expressed that I will not allow the trust we have established to be broken, so everyone has to figure out a way to get that test done while he is accessed for meds.
It looks like next Weds. Nicholas will receive his treatment because Thursday is Thanksgiving. The following week on Dec. 4th we will go to Hartford early and be accessed for counts. Then he will keep his line in and go over to Hartford Hospital (walking distance) for the bone scan (under sedation using the same line). Before he is fully recovered from the anesthesia he will be escorted by one of our nurses back to CT Childrens for a quick CT scan. Before the line is removed he will get his final dose of chemo.
Then we will all come home and Nicholas will LIKELY sleep. Mom and Dad will SURELY collapse (or at least have a few stiff drinks!)
All of this is very up in the air and subject to change. In any event, it is lining up to be a couple of crazy weeks.
The port removal surgery continues to be scheduled for Monday, December 8th.
We continue to have high hopes for a brief, but fun, celebratory tree lighting in our front yard (date to be determined). I wrote to the Fire Chief of Vernon and am awaiting a response for help with the lights. Where there is a will, there is a way, so that tree will be bright this year....somehow!!!!

Friday, November 14, 2003 10:58 AM CST

Yesterday was our weekly clinic visit. Nicholas had a rough time, but is happy today to know that we crossed another "doctor day" off of our list. He is home now with a rumbly tummy, but content to cuddle under a blanket on this very chilly, windy day and watch "kid shows".

While we waited for counts yesterday I read an article in the October issue of Family Circle magazine entitled COUNT MY BLESSINGS. It was written by a woman who has beaten ovarian cancer. She shared her story using a numerical/counting theme. Her style struck a cord with me because I have spent the last 347 days since Nicholas' diagnosis counting down the weeks, treatments, etc. of this journey. Her article inspired me to compile the following:

When each of my children were born I wanted them to stay infants forever I loved the "baby phase". As they were growing I often wished time would slow down so I could savor each moment with them as youngsters. It seemed TIME moved too fast until Dec.2nd when we got "THE CALL" and TIME screetched to a hault.

It was then that the counting began.

2- The number of minutes it took for Dr. Hight to explain the "interesting news".
10-The number of digits I had to dial to tell my parents the news.
3- The number of days we had to wait before meeting the oncologist.
4- The number of surgeries required to get clean margins.
58- The number of times Nicholas has been stuck by a needle.
Countless- number of tears we've shed.
Hundreds- times I wished for this period in our life to go by fast. It was suddenly okay for time to fly by so this could be over for Nicholas. Rather than wish for my kids to stay little, the wish became that Nicholas will grow old someday.

Through all of this there were HUNDREDS of times we were touched by the love and kindness of others.

118- The number of cards and letters of encouragement we received.
2484- The number of hits on this website.
401- The number of guestbook entries on this site.
41- The number of meals that friends, neighbors and hockey families prepared for us.
43- The number of times my Dad called prior to scheduled clinic visits to wish us well. (ALL of them.)
43- The number of times he called afterward to hear how it went.
Hundreds of churches throughout the country have Nicholas on a prayer list.
Countless hours my family and friends have listened to me vent.
Zero-the number of minutes it took my sister-in-law, Carol, to decide she was going to be here with us that first night.
192-number of miles she bicycled in the Pan Mass Challenge with a huge photo of Nicholas on her back that read "Nicholas Rocks" (to raise money for cancer research).
ZERO- the number of over-nites we've had at the hospital.
292- the number of matchbox cars we've acquired this year.

As we are getting closer to the end of treatment I realize that the time has actually gone by pretty fast. During good times and bad life keeps on going.
I've learned many life lessons this past year. Most importantly I've learned to cherish each day. Whether the day goes by fast or slow, is good or bad, each day counts because we are all together.
****************************************************
Note: Monday we go to Dana Farber in Boston for a follow-up. I will update this page after our appointment.
*********************************************
UPDATE: We met with Dr. Grier on Monday. He is very pleased with how Nicholas is doing. He said that indeed the scans are all clear. He reaffirmed for us that the chance of recurrence is around 10 percent. We discussed the schedule for future scans and what we would need to do if IT comes back. Please continue to pray that it won't!
Thanks to my sister-in-law, Carol, her daughter, Hannah and my father-in-law, Larry for their help and support in Boston.
More news tomorrow after treatment.

Thursday, November 6, 2003 5:06 PM CST

Hello Everyone~
Today Nicholas received his treatment and experienced his usual anxiety. Fortunately our appointment was not too long. He has four treatments to go over the next four weeks.
The exciting news of the day is that Nicholas' port-a-cath will likely be removed on Monday, December 8th, first thing in the morning. We have to continue to hope that there will be no delays in treatment due to fever or counts. If no delays, December 8th is the day! That will be one year and 6 days since we learned about this monster that has invaded our lives.
On to other news, we are continuing to make plans for some sort of small celebration for early in December. As I mentioned last week, we are hoping to have a cozy tree lighting in our yard with a warm fire, cocoa and most importantly...loved ones. This web site has had close to 2500 hits....that's a LOT of love!
If you have any ideas of how to help with our special celebration, please contact us!

Thursday, October 30, 2003 6:19 PM CST

Hi Everyone~
First let me appologize to everyone who e-mailed me over the past week. For some strange reason my computer is allowing me to type on this web site, but I am unable to type e-mails. We are hoping to correct this problem over the weekend. I'll respond to all of your mail soon!
Today marked the half-way point of the final quarter! Five more med-days to go!
Our time in the clinic was a bit better than usual. Kaeley dressed in her Halloween costume for the nurses and doctors to see. She continues to be a wonderful distraction for her brother.
As another distraction, I ran to the pet store this morning and bought 2 snails for the clinic's aquarium. We "snuck" them into the building in a plastic bag and I made a big deal out of secretly slipping them into the tank. Both kids got a big kick out of their Mom being so crazy! The snails took off in their new surroundings and climbed up the walls of the tank! Now I just have to keep my fingers crossed that they will thrive over the next several weeks or my grand plan will backfire!
I have requested that the final day of treatment be the final day to use the port-a-cath (the device implanted in Nicholas' upper chest for access). For further blood draws they will use veins in his arm. The needles are much smaller and we can still use the EMLA cream. I feel that Nicholas needs the sense of completion that "NO MORE PORT" will provide. We are hoping that the surgery to remove the port will take place prior to Christmas.
Our dear neighbor , Becky Burr, inspired an idea for an end of treatment celebration which we are brainstorming about lately. We hope to have a "bonfire" (small fire in our Coleman stove on the driveway). I'd like to borrow a couple of area heaters to put in our garage and have a tree lighting. We have a very large pine tree in our yard that I have wanted to light for Christmas since we moved here. I'm hoping that this will be the year to make that happen. I can't think of a better way to symbolize
A.coming out of this dark period of our lives
and
B.all of the hope we have for the future.
Please contact me if you know anyone who can help string lights on our VERY tall tree or loan a heater.
Keep your delightful messages coming! Nicholas enjoys hearing from you!
October 31~ Halloween update***********
This morning Nicholas woke up in a great mood. He was excited to wear a Halloween tattoo to his school party. I put it on his hand and suddenly he began with drooling and requested his cloth. He said the tattoo felt like the bandage that covers the emla cream. I quickly removed the tattoo, but the scene for the day was set. He went to his school party for a short while, but was too anxious to stay. I brought him home and called the clinic because he was heading for a day like last Friday of potential dehydration. We ended up spending 5 hours at the clinic getting IV fluids and a dose of antibiotic seeing that he wouldn't take his antibiotic for his ear infection by mouth. Not a great way for a five year old to spend Halloween. Right now he is resting on the couch, still with his cloth (has had nothing by mouth since noon yesterday). It is our plan to take him out in the stroller tonite to see Trick-or-Treaters and to get fresh air since it is such lovely weather.
Better times next year!

Sunday, October 26, 2003 5:22 PM CST

Hi~
Sorry for not updating this page this past week. We've been having computer problems.
Nicholas had his treatment on Thursday. Kaeley went with us and did seem to make the time in the clinic easier for him. She did crafts and talked to him a lot while we waited for his counts to come back. He sat quietly with a towel to his mouth and nose, but watched her closely and giggled once in a while. The counts came back good, so he was able to receive both meds.
We returned home and he continued to keep the towel to his mouth until he fell asleep for the night.
The next morning he woke in good spirits and was thirsty, so he drank quite a bit. He talked about going to school. Things went downhill fast, however, because I had to give him his dose of antinausea medicine to prevent problems from the meds. he received the day before. As soon as a drop touched his tongue he got sick and went back to keeping the cloth to his mouth the rest of the day.
Of course, he ended up missing school, and was sad about that.
By 2:00 I was growing very concerned about his lack of fluid intake. It had been 24 hours since he ate, and that long since he kept fluids in his system. I called the clinic and was instructed to bring him in for IV fluids if he wouldn't take a drink over the next hour. I tried everything, but Nicholas was convinced that he couldn't drink or even have a popsicle, so we went off to the hospital as soon as Steven and Kaeley got home at 3:00pm.
Nicholas received IV fluids and we were sent home at 6pm. He continued to keep the cloth to his mouth until bedtime. He woke up Saturday morning in a great mood, very hungry and thirsty. After almost two days of not talking, it was music to my ears to hear him chat away. He MORE than made up for not talking!
One more bit to share: Nicholas now knows how many treatments he has remaining. He asked me earlier in the week how many doctor days were left, so I decided the timing was right to share the good news. He now is doing the count down with us!
Less than 6 weeks to go!

Friday, October 17, 2003 6:53 AM CDT

Hi Everyone~
First I will review Nicholas' week and then share about yesterday's clinic trip.
Nicholas spent TWO overnights at his aunt's house with Kaeley last Friday and Saturday. They had so much fun that he didn't want to come home! He is really looking forward to going back closer to the holidays to bake cookies.
He had a shortened week at school due to Columbus Day on Monday and an unexpected school closing Tuesday due to a town emergency nearby. Wednesday he had a fun day at school making a nice painted pumpkin picture!
Yesterday, Thursday, Nicholas went to school and then to a birthday party at Chuckee Cheese (one of his favorite places). The party was a complete surprise to Nicholas right up to the last minute because I never tell him about special events for fear that he won't be up to attending. Plus, we hadn't been to Chuckee Cheese in over a year because I didn't think it was wise to expose him to all of the extra germs! (I asked Dr. Altman last week and he encouraged me to let Nicholas attend the party because his counts have been so good). So, as soon as we pulled into the parking lot Nicholas let out a HOOT of JOY! Being the emotional mush that I am, I got a lump in my throat and tears (of joy) in my eyes. How CRAZY to be so appreciative of the fact that your child CAN go to Chuckee Cheese!
He had a super time. He played games, ate well and faced his fear of climbing in the tubes and loved it!
Nicholas did not want the party to end, but understood that we would return soon for more fun.
Once home I had to drop the news that it was doctor day and the tears began, but within minutes we had to get Kaeley off of the bus. Kaeley had loads to share about her day, so that helped a bit to distract on the ride to Hartford.
The child life specialist greeted us when we arrived and had some "cool" new things to show the children. She also guided them in a craft project. Thankfully she had a lot up her sleeve, because Dr. Altman was out and there was a LONG delay to see the other doctor. Nicholas managed through the waiting period, but held the cloth to his mouth and did not talk at all.
Dr. Gillan took a peek at him and then we went in to a Halloween Room for meds. I think it was a little exciting and a little scary for him. He received his dose, and then we exited that room. He seemed to be okay, but as we exited into the hallway he had some gagging. We hurried out to the fresh air while Daddy and Kaeley got the car. Nicholas continued to keep the cloth to his mouth until he fell asleep at 10pm. He did not eat or drink anything since we left the party.
This morning he woke up very thirsty and hungry!
He went off to school with a great big smile on his face, so one more week is behind us.
Less than 7 weeks to go!

Friday, October 10, 2003 7:36 AM CDT

Hi~
Nicholas had a great week. He loves school and has a couple of new special friends. He enjoys participating in Kaeley's soccer practice a couple of times a week and being a big help to me in the yard and doing errands. He likes to keep very busy, but continues to know his limits and will "crash" in a chair and watch the Disney Channel or read books when he feels tired.
Yesterday he was surprised to see his Aunt Carol outside of his classroom door when school let out! It was a gorgeous Indian summer day, so we got take-out lunch as a treat and brought it home for lunch on the porch. Nicholas had fun playing in the back yard with Aunt Carol.
It was also treatment day, so we all went to the hospital together once Daddy got home. Nicholas did a bit better than he had been recently. He did need to hold a cloth to his mouth throughout treatment and into the evening, but had no vomiting and managed to giggle occaisionally and carry on conversations through his cloth.
After the actual treatment Carol took Nicholas outside for a walk while Steven and I met with the entire care team. We all brainstormed about ways to make things go better for the duration. Each discipline was prepared for the meeting with ideas to discuss. We all realize that his anxiety is likely conditioned and that we won't be able to eliminate it entirely, but everyone has fresh ideas to try. So, we left feeling that the meeting was worthwhile.
In the evening Carol surprised Nicholas by taking him to the Build-A-Bear Workshop and spoiling him rotten! He selected an adorable green turtle with a backpack! He stuffed it, gave it a heart and gave it a "bath". Then he selected a leather jacket,jean shorts, and cool mirrored sunglasses for the turtle! He named his turtle Nicholas!
After Kaeley got home from brownies, Carol, Kaeley and Nicholas left for an overnight or two in Dracut. The children were so excited to surprise their cousins!
Less than 8 WEEKS TO GO!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Friday, October 3, 2003 6:58 AM CDT

Hi~
Well, yesterday started out on a great note! As you all can see, Nicholas received a message in his guestbook from his new special friend, Bret. Bret was our driver in the Make A Wish event "Wishes on Wheels" a few weeks ago. We rode in the cab of Bret's truck in a truck convoy from Willington to Manchester and back. It was an awesome experience for us all, one that Nicholas hasn't stopped talking about.
We then had an early appointment to see the plastic surgeon for a 9 month follow-up. The office neglected to notify us that they moved to Rocky Hill, so we ventured in to Hartford. Nicholas began with nausea as soon as we hit the hospital campus. When we were redirected to Rocky Hill I thought he would improve, but the damage had been done which impacted the entire day.
The appointment was made early enough so that he could attend school, but with the change in venue we ended up being late. Nicholas was still so rattled about SEEING CT Children's Medical Center that he wouldn't get out of my arms, so we came home.
His nausea continued for another 2 hours. We made cookies and played and finally he decided he was okay. Unfortunately, it was "doctor day" so his relief was short-lived.
Our experience at the clinic was not the worst, not the best. Sarah was his nurse, so that helped a lot. His counts came back FABULOUS, so he was able to start the fourth and FINAL round of chemo. (Yes, I love to emphasize the word FINAL!!!!)
This morning he is doing great and will probably go to school.
LESS THAN 9 WEEKS TO GO!!!!!!!
Please keep Nicholas in your prayers that the last course goes smoothly for him and that when this is over it is truly OVER.
THANK YOU.

Saturday, September 27, 2003 6:58 PM CDT

Hello Nicholas Fans!
I am sorry that it has been so long since my last entry. We had some work done to our computer and changed from AOL to SBC Global DSL. (Please note that Nicholas' web page address will remain exactly the same and you can continue to leave him messages on his guestbook in the same manner. However, his address for private e-mails has changed to Braveboycole@sbcglobal.net.)

Nicholas had his final treatment of the third quarter on Friday September 12. He did remarkably well. His counts were excellent and he had far less anxiety at the clinic than usual. He received Actinomycin which is the drug that he gets every three weeks with the potential for nausea. He had NO problems with nausea or vomiting AT ALL.

The following week he was able to skip his clinic visit for bloodcounts because they had been so great.

Yesterday we returned to the clinic for bloodwork and a dose of Epogen (helps his hemoglobin levels stay in the safety zone). He received NO chemo. because he is on the break between rounds. Unfortunately, he had a TERRIBLE day of anxiety. As soon as he found out that it was "doctor day" he started to be sick at home. He was sick again in the parking garage, again in the hall of the hospital, and again in the clinic...all before ever even being touched by the nurse.
The good news is that his counts are SUPER. His hemoglobin is higher than it was before his first dose of chemo. in January. Also, he had his quarterly chest x-ray which was CLEAR!!!!!!!!!! This is very big news because the lungs are the first place the rhabdo. would likely spread to, and there is no trace!!!
The bad news is that the anxiety with vomiting continued as we were leaving the clinic. Nicholas was feeling rotten for two hours after we got home. Never before has he been upset for so long after a clinic visit. He usually is his perky self about half-way home from Hartford. His mood changed the instant his babysitter, Emily, walked in the door!
Next Thursday we return to the clinic to start the fourth quarter and FINAL round of chemo. He will receive meds. each week until the FINAL dose which, if we stay on schedule, should be Dec. 4th.
Yes, we have switched clinic days AGAIN to be on Thursdays. Things seem to go much more smoothly when we have our special nurse, Sarah, who works every Thursday.
So, I will post an update next week.
Thanks for checking in. be sure to keep your messages coming and cheer on our Brave Boy!

Wednesday, September 10, 2003 8:45 AM CDT

This is my second entry for this week. I had explained that Nicholas will be having his treatment this week on Friday.
He has had a minor cold or a case of allergies over the last few days, but has been able to attend school. He was quite pleased because he was line leader on the first day! When Steven and I went in to pick him up that day we were early, so we got to see our little line leader in action! He took the role very seriously and at times was holding both arms straight out to either side to prevent kids from moving ahead! His adjustment has gone even better than we had expected. His experience being with the same teachers as last year so far has proved to be a confidence boost. He knows the "ropes" and is so very proud to show others.

I am sure that most of you have heard or seen ads from the Connecticut Red Cross recently. There has been a severe blood shortage in this state, causing cancellation of many non-urgent procedures requiring blood.
As you also know, Nicholas received a blood transfusion two weeks ago out of necessity due to low hemoglobin levels.
Well, tonight I will be donating my first pint of blood. I have seen first hand how much blood can be needed and how much of a difference it can make. Nicholas has had peachy cheeks and wonderful energy ever since his transfusion.
I have always been squeamish about such things, and I admit I am anxious about this evening. However, I continue to remind myself of what Nicholas deals with each week. He faces a short, but thick and slightly angled needle which enters his chest. He endures this frightening experience without a choice.
Many of us have a choice about donating blood. If you are in good health, over 110lbs. and over the age of 18 I ask you to please consider it. I will let you know how I make out!
*********9/11 UPDATE:
I went last night to donate blood and was rejected because I have spent greater than 3 months in Great Britain since 1980. The concern is Mad Cow Disease. I was very disappointed, but did learn a lot about the whole process. As a mother of a recipient of donated blood, I am very pleased to see how well donors are screened.
I also got to experience (from a different perspective) a touch of what Nicholas must feel. The wait was only about 15 minutes before they brought me in to ask me questions, but it seemed longer. My anxiety definetly grew during the waiting period. My stomach felt upset and my palms were all sweaty. If this simple procedure caused me this much anticipatory anxiety, what must Nicholas be feeling each week?
I got home in time to spend extra time cuddling with him before bed. Maybe I can't give a physical part of myself to help this cause, but I can certainly give all of my love and affection.

~More news tomorrow after treatment.~

Monday, September 8, 2003 12:48 AM CDT

Hi~
This afternoon we were supposed to go to the clinic to finish the 3rd quarter of meds. However, when we returned from bringing Nicholas to school this morning we had a message on our machine from the clinic. Dr. Altman reviewed his caseload for today and did not want Nicholas to receive his med. until Weds. We had been given the okay by another physician in the clinic to gradually back the days back to Friday. He would have had his med. today, then had nearly a three week break to start the fourth quarter on Fri. Sept. 26th. So, rather than be done with the third quarter today, we will move treatment to this Friday and then be on a Friday schedule for the duration. This change in schedule switches our ending date from Nov. 28th to Dec. 5th. It's one week, but YES it is a big deal when you can't wait for this to be over!
Thinking rationally, we realize that Dr. Altman is trying to do what is best for Nicholas' system and this extra time may avoid problems with low counts over the next few weeks. Also, Nicholas has sniffles, so he might not have had high enough counts to get actino. today anyway and it would be rotten to be accessed for nothing.
We just have to keep our fingers crossed that these sniffles don't develop into a fever.
Never a dull moment here!

Tuesday, September 2, 2003 10:40 AM CDT

Good News to Report!
Nicholas had his treatment today and his hemoglobin is at it's highest level since mid-APRIL!!!
He did much better today than he did last week as far as the anxiety goes. There is no doubt he has the worst case of anticipatory anxiety the clinic has ever seen. However, today he was somewhat distracted by a new toy Dr. Altman bought when he was on vacation last week. It is a SpongeBob bubble-blowing machine which Dr. A. got for the clinic, especially with Nicholas in mind.
The clinic was not crowded, which was surprising since we have a shortened week due to the holiday yesterday. So, everything flowed nicely with no long delays.
Nicholas' white count is down again, hovering just over the limit which would put us back on house arrest. To play it safe we are going to stay out of the public domain over the next few days. School starts for Nicholas this Friday with a one hour getting-to-know-you class. We don't want to miss that!
Nicholas wants to type to all of you for a moment:

mnbvcxzasdfghjkloiuytewq
mnbvcxzasdfghjklqqwertyuiop`12345y67890321456987/*/----------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------

Thanks for checking in!

Thursday, August 28, 2003 2:06 PM CDT

Greetings from Connecticut Children's Medical Center. This is my second entry this week, so if you did not read one earlier, please check back to catch up.
We are here because Nicholas woke with a fever this morning and was a very unhappy little guy. He explained that he felt like there were "sneezes in his tummy" which ended up meaning he felt like he was going to be sick to his stomach. The timing was off for this nausea to be chemo. related, so we believe he has yet another virus.
He had vomiting episodes all morning.
His bloodcounts came back LOW, so he is currently receiving the transfusion I was so hoping to avoid. He also received a medication to help boost his red cell count which takes a few weeks to really make a noticeable difference. (We had not started this med. before because it used to require a few injections each week. Now there is a version of the drug that can be given once per week during our regular visit.) There were a few different opinions about taking that med. Some here feel that he is so close to the end of treatment that the med. may not have enough time to make much of a difference. Others feel that it is worth the effort and that it may be in time to prevent the necessity for any further transfusions over the next several weeks. We asked loads of questions and after learning that there really are no side effects, and that it can be done quickly and not through a pump over time, we decided to go for it.
Nicholas is completely unaware that he is receiving the transfusion. His nurse, Sarah, has gone to great lengths to cover all tubing with white tape. The iv pole is behind him as he is lying down watching videos beside me. The pole is even covered with a kids pajama outfit, so I can't see anything either!
The transfusion will take a total of four hours, so we won't be home until at least 7pm.
Hopefully the fever will not return and we will be able to enjoy a peaceful weekend at home. If this is the case, he won't have to return until Tuesday for his next treatment.
I will update this page sometime over the weekend to keep everyone current.
Thank you for checking in.

Thursday, August 28, 2003 2:06 PM CDT

Tuesday, August 26, 2003 5:12 PM CDT

Hello Everyone~
Today was Nicholas' treatment day for this week. He was terribly upset when he got up this morning and learned that it was "doctor day". He fought me about putting on his EMLA cream which he has not done in quite a while.
Kaeley distracted him for me in the car on the way to the clinic. She's such an awesome big sister!
Once we got to the clinic, despite having the first appointment on the books, we had a 45 minute wait. Nicholas had unbearable anxiety during the waiting period. He began by being tearful and fidgety. I notified the receptionist that he was having a rough time and asked her to let the nurses know. Before she got around to telling them, Nicholas vomited right in front of her. She was quicker to move then! We were ushered right into an exam room, but then we had to wait longer because while I was calming him down and changing his clothes, they took on their next patients. It was SO FRUSTRATING.
Finally he was seen by Doctor Gillan. Dr. Altman was away today. Then he had his blood drawn and received his med. which altogether took less than 2 minutes.
After it was all over he let out screams releasing his own frustration with everything he is dealing with. It was heartbreaking.
The upside (which I always try to find) is that there are only two more treatment days for this quarter. Then he will have a 3 week break from meds. (still will need to have his blood drawn).
His counts came back and are up slightly, but are due to drop again over the next 2-7 days. So, we have to continue to be vigilant about protecting him from exposure to illness and watch him for signs of severe anemia. That has proven to be stressful for me because he often seems pale and it's tough to judge because it isn't measureable without counts. I don't have a color chart which shows how pale is too pale, but I don't want to be rushing him to the hospital every day for checks either.
So, it's safe to say that we're all tired of the exhaustive battle, but we keep fighting the fight and
WE ARE GOING TO WIN!!!!!!!!!!

Wednesday, August 20, 2003 3:31 PM CDT

Hi~
Today Nicholas had his clinic visit. He had a rough time with nausea and vomiting before he had his medications. It was very discouraging because he had made some progress recently and had not been this sick from just nerves in a while.
His counts from today were good, not great. So, the prospect of needing a transfusion is not far from our minds.
His next scheduled clinic visit will be next Tuesday. I will update then if things stay calm this next week!

Tuesday, August 12, 2003 10:38 AM CDT

OOps! I didn't get around to updating this page yesterday and I received many caring phone calls to check in. I am happy that this page is proving to be such a good way to communicate to so many of our friends and family members.
Last Friday afternoon I received even more info. about Nicholas' bloodwork. In addition to having low hemoglobin levels, his ANC (white cells & polys.), which determines how well he could fight off bacteria, was dangerously low. Therefore, we were basically on house arrest all weekend. He could go outdoors for fresh air, but could not be around other people. It is amazing how much we miss something when we are told we can't do it! Fortunately, Poppa (Steven's Dad) came for a visit and that made it a bit more fun here!
Nicholas had his clinic visit yesterday morning. His counts came back okay. His hemoglobin stayed exactly the same. His retic. was slightly up which indicates that his bone marrow is thinking about producing more red blood cells. So, we are hoping that his next counts will show a little climb in his hemoglobin levels. His ANC rose to a much better level, so we are not quite as restricted.
Nicholas had his chemo. yesterday too.
Hopefully we won't have to return to the clinic until next Monday.

Friday, August 8, 2003 11:35 AM CDT

Hi~ Rather than repeat what has happened this past week, please look back at other entries if you have not checked in recently.
Nicholas did not need to have a transfusion today. His counts came back and are still low, but not low enough to need blood yet.
We have to return to the clinic on Monday for treatment and counts. Hopefully we will see a greater rise in his counts then. At this point we have to be prepared for the possibility of needing a transfusion at any time, so our appointment on Monday will be early in the day to allow time if blood is needed then. Trasfusions can be done right in the clinic and he can go home the same day if done early enough.
Despite low counts, Nicholas is up and about, playing and full of energy. He is really enjoying playing Pirate today!
I will update this page again Monday. Have a nice weekend!

Wednesday, August 6, 2003 4:54 PM CDT

Things are happening by the minute, so this is my THIRD update in as many days. Be sure to look back if you haven't read in a while.
I am typing this while sitting at CCMC. Nicholas' temp. went up over 100 so we came in for a work-up. His bloodcounts came back LOW. At this point a transfusion looks likely for Friday. We have to return then for counts and if they have not made an improvement on their own, he will need a transfusion which I have feared since DAY 1. I have been assured by the staff that it is safe, however, it still worries me. Plus, I have the concern that Nicholas hates to be connected to tubes and a transfusion requires a lengthy time connected to IV through his port.
As for the fever, he is currently receiving IV antibiotic and hopefully will be on the mend or else we will be back tomorrow for another dose. He has no symptoms, so it is once again a mystery why he has the fever.
To make life just a bit more tricky, Kaeley got car sick on the way to the hospital today.
So, this has not been the greatest day. Hopefully I'll have better news tomorrow.
Thanks for checking in.

Wednesday, August 6, 2003 8:27 AM CDT

Hello to all~
This is my second entry this week, so please check back to Sunday August 3 if you haven't read that yet.
Steven, Kaeley and I are on the mend. Thanks to all who called and sent notes! We have the most caring network of support anyone could imagine!
Nicholas had treatment on Monday and did fairly well. He had some anxiety and did get sick once from the stress of it all, but was back to his happy self quickly. His hemoglobin level is the lowest yet, causing me some concern about the possibility of needing a transfusion in the future. However, it is possible that the count will come up on its own. Time will tell.
Yesterday Nicholas was very out-of-sorts most of the day. He was very cranky and by late afternoon he was complaining of a headache. I gave him a bath and insisted that he take a nap. He NEVER naps unless we are in the car for an extended period of time, however, he napped yesterday, willingly. When he got up he had a low fever. By 10:30pm it was at 99.8 axillary which equals 100.8. (Reminder: temp. over 101 requires a trip to the hospital.) So, we settled Kaeley at The McGrath's house and held our breath during the night to see if Nicholas' temp. was going to rise the dreaded 2/10ths of a degree. It DIDN'T!
Today Nicholas is still not himself, but his temp. is not as high. We are going to see how the next few hours go. If it starts to climb higher we will bring him in for a check to try to avoid another sleepless night.
Never a dull moment around here!

Sunday, August 3, 2003 1:39 PM CDT

Hi~
Last Monday Nicholas received his treatment. He did well at the clinic despite it being a lengthy visit (we had to wait for counts). We spent our time outdoors enjoying a walk, playing with bubbles, and having a snack picnic on the grass. He did get upset when we were called in, but Sarah, his nurse for the day, was very quick and we were soon able to go home.
As soon as we got back to the house we packed the minivan and headed off for Steven's dad's house in Fairhaven, MA.
Just before we got there Nicholas began to vomit. He was sick every 15 minutes for over four hours. He had never been that sick in his entire life. I spoke with Dr. Altman who told us to go to the local E.R. if the vomiting did not subside within the next hour. (Nicholas would need to have IV fluids and antinausea meds.) Miraculously, Nicholas fell asleep as soon as I got off of the phone and was fine all through the night.
The next morning we were scheduled to leave for Martha's Vineyard and Dr. Altman approved the trip, so we were off!
The first few days were great! We were reunited with two families that we knew prior to the trip from the clinic and from the Hole in the Wall Gang Camp. We also met a couple of new families. There were three houses at the compound. We shared a large house with a family we knew and one that we had just met. Each family had their own room, but we all shared the bathroom, kitchen and living room.
After settling in we went to the town of Chilmark and had a private tour of a chocolate factory. We all put on aprons and the children had total run of the place! They made a few different types of candies and had a ball! That night we returned to the houses and had a barbeque with all of the families.
The second day we were all brought to a nice beach. The staff did all of the "tough" parts~packing up toys, chairs, umbrellas and lots of good food. The children found shells-some HUGE and inhabited!
We had a mexican dinner that night back at the houses and then were taken to OakBluffs for a night on the town. The children loved riding the carousel, playing arcade games and having ice cream!
Thursday we went on an island tour and got to do a little shopping. When we returned, one of our housemates-a 9 year old with leukemia- had a fever, so she took a trip to the hospital. We had definetly noticed that she had been coughing and sneezing since we arrived. Her condition worried us because none of the other children should be exposed to the germs she was emitting. Unfortunately, we often shared a van with her family and we shared the same common areas within the house.
Friday Steven woke up congested which we attributed to the wooded area we were living in. However, as the day progressed he was really feeling rotten. Kaeley began to complain of a scratchy throat at bedtime. Shortly later I began to have a cough. The three of us were up all night feeling rotten. Nicholas, bless his heart, slept like a baby through it all. By morning Steven, Kaeley and I were in very bad shape. We decided to take the first possible ferry rather than stay until our scheduled departure and expose others to our germs (now there's a thought!).
We got home in the early afternoon yesterday and have been all resting ever since. Nicholas remains healthy (knock wood). He was puzzled when I bathed him wearing a doctor's mask yesterday! Hopefully the mask and my trusty can of Lysol will help keep the germs away!

Wednesday, July 23, 2003 10:00 AM CDT

Hi~ Since my last entry we have been very busy, so I have a lot of catching up to do on this page.
I left off with an update just after Nicholas' first treatment of the third quarter. The meds. seem to be building up in his system because the nausea lasted for several days after that treatment. Despite feeling yucky on and off, Nicholas enjoyed a couple of nights at his Gee and Pa's house (with Kaeley) while Steven and I attended Steven's Mom's wake and funeral in MA.
Nicholas received his second treatment of this quarter on Weds. July 16th. He experienced a lot of anxiety which caused him to be sick at the clinic, but was better once we got home. By this point the nausea caused by the med. of the previous week had worn off. (Reminder, he gets Actinomycin, a chemo. drug which has the potential for nausea, once every three weeks.)
Excitement began to build for Nicholas' big birthday bash, but the day before he came down with a fever so we had to return to the clinic (Friday, July 18th). This visit to the clinic was probably the worst yet. He felt awful, combined with his anxiety over having to be at the clinic AGAIN in the same week, made him a bundle of nerves. He was VERY ill (stomach-wise) while we were there. However, he perked right up on the ride home and even enjoyed a short time in the MONSTER TRUCK MOON BOUNCE we rented for his party!
Party day (Sat. July 19th) he was in his glory! He enjoyed the moon bounce, friends, family and ate great food! He recovered literally overnight from his fever/virus and had a super b-day celebration!
Yesterday, Tuesday, we returned to the clinic for his third dose of this quarter. (For those who are wondering, we are moving a day earlier each week to be able to go to Martha's Vineyard next week with the organization TIME FOR LIFE).

NICHOLAS DID GREAT!!!!!!!!! I REPEAT, NICHOLAS DID GREAT!!!!
We tried a few new tricks:
He consumed all of his dose of ativan (anti-anxiety med.) without spitting it out. We did some playtime about BRAVERY before leaving for the clinic. We called ahead to be sure there would be no waiting time. We brought new INCREDIBLE HULK fists which made Nicholas feel powerful.
He cried a bit when being accessed, but then pulled a little Knight figure out of his pocket and told Kaeley it was time to go home!
Hopefully we are on the right track! Keep your fingers crossed for us!

Friday, July 11, 2003 6:15 PM CDT

Hello to all of our caring friends and family! Since my last entry Nicholas turned 5!!! He had a wonderful birthday. We left for Misquamicut, Rhode Island the day before his b-day and settled in to a lovely cottage near the beach loaned to us by the Thurnauer family.
Highlights of our time there include crabbing, swimming, building sandcastles, taking walks, a PAWSOX game, TWO trips to the Mystic Aquarium, fun in the arcade and taking OUTDOOR showers!!! (Nicholas loves to share that Mommy had a hoppy-toad join her in the shower one night!)
The Thurnauers generous gift of time at their cottage was certainly therapeutic for us all before starting the 3rd quarter of chemo.
Nicholas had his appointment on Wednesday. He received both of his chemo. meds. and experienced nausea and gagging from anxiety while at the clinic. At home later that evening he has further tummy troubles which continued on and off Thursday and today.
Many of you have now heard that Steven's mother passed away this past Tuesday evening. She had experienced many health difficulties over the past few years with increasing problems over the past few weeks.
We thank you for your continued support and ask that you continue to keep Nicholas in your prayers.

Tuesday, June 24, 2003 8:44 AM CDT

Since my last entry much has taken place!
Nicholas and I went to meet with the social worker at the hospital. First we went shopping for some toys to donate to the prize box at the clinic which was the excuse I used to go to Hartford! Nicholas was not pleased to go to the clinic and refused to enter the area where the doctors and nurses work. Instead we spent time in the social worker's office doing some play therapy (making puppets to help talk about feelings.) Most of the time he was quiet and had quite a scowl on his face. A bit of the time he participated, but we didn't get much info. from him. Instead, the social worker and I brainstormed about ideas to make things better for him.
We had our clinic day on Wednesday. That morning Nicholas and I went to the mall to do a little shopping. I let him select a few candles at Yankee Candle, I bought a couple of whistle lollipops and we had lunch.
When we got home we were excited to meet Kaeley at the bus stop as it was her last day of school. Before we went to get her, I put on the EMLA and the mood of the day switched from great to poor in a flash. Nicholas gagged and vomited AT HOME from the stress of thinking about "doctor day".
Steven met us at the bus stop and we all greeted Kaeley. The ride into Hartford was actually good. Kaeley was a great distraction.
Once inside the hospital Nicholas got very anxious, but I pulled out the whistle pops and they were the cause of lots of giggles for a while. The anxiety started again when the nurse was ready for us. She gave Nicholas a container of bubbles which was another great distraction device...for a few minutes.
We then pulled out a couple of the votif candles we had gotten earlier in the day and played a guess-the-scent game with the doctor during the exam. That went well, but nothing worked at the time of his needle. From then on he was white as a sheet, sick to his stomach and tearful.
The good news is that his counts were good, so he received his final med. of the second quarter, so he has a three week break from chemo. meds., then we will start the second half of treatment. Dr. Altman agreed to skipping a week of bloodcounts, which is especially nice seeing that this Saturday is Nicholas' birthday!
We were thinking that the nausea was solely due to anxiety, but he had a spell of nausea on Saturday and again yesterday (Monday). Fortunately, the spells do not last long.
The Golf Fore the Kids tournament was a huge success! The weather turned out great. Everyone raved about what a terrific tournament it was! It was certainly overwhelming to Steven and to me to see so many of our friends there to support us. My father left his annual vacation in Vermont to be with us. Our good friends, The DesRoches, came from Pennsylvania. So many of our non-golfer friends, and people who could not attend sent generous contributions. Young men from the East Catholic hockey team volunteered. Another great friend, Matt Phelps spent the day guiding the other volunteers. He and another of Steven's co-workers donated a complete cookout for 40 as a silent auction item which raised a whopping $575. !!! A couple of our friends won raffle prizes (money and a TV) and donated them back to the hospital. Steven's Director of Nurses, Terry, donated cigars for every golfer.
I could go on and on about all the good deeds done that day!
Thank you to everyone who participated and to everyone who peeks in to see how our Brave Little Man is doing!

Saturday, June 14, 2003 7:31 PM CDT

Nicholas' day on Thursday did not go as well as we had hoped. We did get prescriptions for anti-anxiety and for nausea in hopes that he would not experience any more vomiting from nerves. He took both of the meds. in his juice without even noticing, so that was great.
However, as soon as we got to the clinic he gagged. His med. procedure took less than 3 minutes during which he became extremely upset. Following the meds. he seemed to recover and chose to engage in a painting project, but a few minutes in to it he vomited.
We were very discouraged that the meds. did not seem to help at all. We met with the social worker while Nicholas was busy painting. She plans to meet with Nicholas one day next week to try to sort out some of his feelings and see what can be done to make things better for him.
We did meet with Dr. Hight (Nicholas' surgeon) and he felt the bumps we have been worried about. He assured us that they are lymph glands and that they are harmless. He is completely confident that a biopsy is not necessary. I nearly kissed him for that piece of news!
Nicholas slept on the way home from the clinic and stayed asleep into the evening. Friday was a lazy-bones day, but today he was outdoors all day enjoying lots of active play.
Happy Fathers Day to all the terrific DADs in our lives!

Monday, June 9, 2003 7:33 AM CDT

Thankyou for checking in. I appologize for not updating this page last week.
Treatment day last week (Thursday) did not go very well. Nicholas was fine in the morning, but became very quiet and withdrawn on the way to the hospital. When we entered the clinic he was very pale and wouldn't lift his head. When having his port accessed he became so upset that shortly afterward he vomited. We remained at the clinic for one hour after being accessed so that he could receive his monthly antibiotic IV. The entire time he was pale, quiet and had his head down. The only words he spoke were "I want to go home".
We took a few moments to talk to Dr. Gillan while Nicholas was distracted. (Dr.Altman was away for the day). We discussed our continued concern about the pea-sized bumps Nicholas has on the back of his head. Dr. Altman believes that they are swollen lymph glands. Dr. Gillan thinks they may be sebaceous cysts. The fact that neither one of the docs KNOWS for sure what they are has us worried. So Dr. Gillan put a call in to Dr. Hight (Nicholas' surgeon) who will be taking a peek this week.
In the meantime, when we got home Thursday night I called Dr. Walker who has been Nicholas' pediatrician since birth. For many years I had pointed out strange bumps on the back of Nicholas' head to Dr. Walker, and he always checked them and ASSURED me that they were swollen glands. He knew to send me for further exam on the tiny bump on Nicholas' face. So, I thought he might know whether the new bumps are okay or not. He reassured me quite a bit by explaining that
*the bumps seem pretty symmetrical which is a good thing.
*It would be highly unlikely for new rhabdo to grow while Nicholas is on Chemo.
*It would be most unusual for Rhabdo. to sread to that area and not in the area of the original site. There really isn't a direct path around to that site.
* blood counts remain good.
* Nicholas' ears have not been draining well for 6 months, so lymph glands may not drain either.
*the team at the clinic is great and it is there job to detect problems. If they were concerned, they would act quickly.
So, we will still see Dr. Hight for his opinion and keep a close eye on everything. If we continue to have doubts, or if Dr. Hight has any concern, we will have to have one removed to be sure.

This week I will be working with the clinic staff to get an anti-anxiety med. for Nicholas and an anti-nausea med. to have prior to Thursday's appointment. As I have said before, he fights taking any oral meds. even if they are yummy, so we are working on finding tiny tablets that dissolve the instant they touch his tongue.

The clinic nurses met after we left and feel quite sure that Nicholas' nausea is due to anxiety and not the meds. themselves. The trick will be calming his nerves. With prayers, good wishes and a pinch of luck, we hope to go back to smoother sailing this week.

I'll keep you posted!

Monday, June 9, 2003 7:33 AM CDT

Sunday, June 1, 2003 7:03 PM CDT

Hi Everyone. Today we had a lovely visit from the Make A Wish ladies. They brought fun Disney goodies for the kids and got us all excited about Nicholas' wish trip planned for early next year to Disney World!
Nicholas felt well today, but had a couple of rough moments on Friday and Saturday with nausea and vomiting. He had one "spell" each day that lasted 30-40 minutes. Once he actually got sick he felt great. These were the first experiences in the five months of chemo. with these symptoms. So, perhaps it was a touch of a bug, but we will be having him take an anti-nausea med. at home the next time he receives actinomycin (the once-every-three-week-med. that has the potential to cause nausea).
Within the next week we may be changing this site to RESTRICTED ACCESS which will require you to enter a user name and password. We appologize for any inconvenience this may cause. We will be sending the access information to you in an e-mail if we have your address. If you have trouble with the site, please feel free to contact us at Braveboycole@aol.
Have a wonderful week! Think SUNSHINE!!!

Friday, May 30, 2003 6:52 AM CDT

Hello everyone. Nicholas' clinic visit went better than I had expected yesterday. It followed almost a week of worry because last Friday night I discovered a bump on the back of his head. Saturday morning I discovered another and was somewhat comforted by that, (thinking they were swollen lymph glands related to his ear infection/cold) because they were on either side of the back of his head.
We went on with our weekend plans with the intention of calling the doctor on Tuesday (after the holiday weekend).
Saturday we enjoyed a lovely time at the Page's house. Andrew Page was one of Steven's hockey players from East Catholic. Nicholas has formed an amazing bond with Andrew and we are all very fond of his whole family. Sunday we had a "Vera Family gathering" at our house. The children enjoyed time with everyone and loved being able to play outdoors after WAY TOO MUCH RAIN recently!
Memorial Day morning we couldn't "take" the worrying any longer, so we called Dr. Altman and went to see him during his rounds at the hospital. He measured the bumps and said that we will keep an eye on them, but they are probably not cause for worry. (We were still worried!)
However, we went on with our day and went to see the "Lizzie" movie with Erin and Brigid McGrath! It was a nice way to spend yet another rainy day!
Tuesday and Wednesday Nicholas seemed more pale than usual, was acting more cranky and still had the sniffles. So, I was expecting low counts and possibly a delay in treatment yesterday. To my surprise, his counts came back GREAT and he was able to receive both of his chemo. meds.
Dr. Altman showed us an anatomy book and explained that it would be "highly unusual" for Rhabdo. to have taken a path from the primary site to those new-found spots on the back of his head. So, he will continue to watch them carefully, but we are not to worry. (We still will!)
Nicholas' ears are showing slow improvement, so he will continue on the antibiotic a bit longer.
The day wrapped up with a lot of fun. When we got home Nicholas couldn't wait to ride on his new ATV from Nanny and Poppa, so he cruised around the yard for a good while until it began to sprinkle. Then we went to the Outback for dinner with Gee and Pa.
This weekend the Make A Wish ladies come to give Nicholas the official word that his wish has been approved and to get him excited about planning the trip to Disney!
Have a nice weekend!

Thursday, May 22, 2003 5:41 PM CDT

Thanks for checking in! Today's clinic visit went well. Nicholas was somewhat less anxious (fewer tears when I put on Emla cream). He fell asleep on the way to the clinic and woke up in a "shy" mood. He was very "clingy" and quiet during his exam. He cried when he was about to have the needle, but the whole procedure (blood draw and med.) took 2 minutes or less. When it was done he was in a good mood quickly and enjoyed selecting a prize from the prize box at the hospital.
Dr. Altman said that his ears are red again, so Nicholas is going back on an antibiotic. There is some concern over the frequency of ear infections so we will discuss this issue further at our next visit.
Nicholas finished up Nursery school for the year yesterday. He had a ball at the graduation ceremony and has informed us that ALL of his friends will be coming over for playdates this summer!
More next week! Enjoy the Memorial Day weekend!

Monday, May 19, 2003 3:28 PM CDT

I thought I'd post an entry today because many of you know that Nicholas had not been feeling well on Saturday. He wasn't quite himself and developed a fever. He had cold symptoms, so we loaded him up on fluids and he rested and was better on Sunday. We enjoyed a lovely afternoon at the Time for Life cookout with Auntie Ann and Uncle Ed.
Today he went to school and enjoyed time with his "Gee" who came for a visit. We went out to lunch and to a couple of garden centers. Nicholas loves to help me select the items for the garden! After a busy day he's relaxing in the house sipping lemonade!

Thursday, May 15, 2003 2:56 PM CDT

Today's clinic visit went well. Dr. Altman was back from his trip to Seattle and was pleased with how Nicholas is doing.
Nicholas received his 5th dose of med. for the second quarter. (There are 10 med. weeks and 2 med-free weeks in each quarter, so he has completed 1/2 of the meds. for this quarter!)
He had a great week at school and is sad to be "graduating" next week. School ends next Wednesday with a graduation ceremony. Nicholas is participating in the ceremony, but we are keeping him in nursery school next year, so we'll really celebrate then! He LOVES his teachers, so he is really looking forward to being with them again in September.
This weekend is sure to be filled with more fun. Saturday morning Kaeley has a softball game, then we are off to a birthday party. Sunday we are going to a cookout sponsored by Time For Life (a great orginization that plans many fun activities for families in similar situations). Uncle Ed and Auntie Ann will be riding their Harley that day and will meet us at the cookout. We'll probably also see some of the families we went to camp with last weekend.
We thank everyone for their cards, calls, prayers, etc.

Monday, May 12, 2003 7:00 AM CDT

We had a wonderful time at the Hole in the Wall Gang Camp! After arriving on Friday night the whole group (20 families) met in the dining hall for festivities. We sang songs, played ice-breaker games and mingled. Before going to bed we wandered the grounds a bit to see what the place was all about.
There are many beautiful buildings set on 350 acres of woods and a great big pond. There is a full gymnasium, a theater, arts and crafts building, woodshop, infirmary, camp store and many log cabins for campers and staff. All of the buildings have solid wood interiors so every place smelled sooo good!
We all slept great and were up for breakfast by 8:30. Then we were off to activities! We ALL made lovely crafts! Kaeley made jewelery for herself and for me! Nicholas made a Red Sox sign using wood, sandpaper and tracing materials. Steven made a beautiful shelf and I made a sign for the kids' playscape. Later both kids made birdhouses and a banner for me for Mother's Day with Daddy's help).
Steven and I enjoyed massages that were offered to the grown-ups!
After lunch we all went to the TOWER (a 35 foot verticle climbing wall). Kaeley climbed it and then traveled 250 feet on a zip line 30 feet in the air!
There was much more fun throughout the evening with entertainment , more crafts and a "slumber party" for the littlest campers.
Sunday morning the children put on a show in the theater. Kaeley went on stage and did the tongue twister "How much wood would a woodchuck..." and everyone cheered! Nicholas surprised us by going up on stage by himself, but once there he forgot his act (to be a wizard) and started to cry. The crowd was sweet and he was quickly back to smiles.
The children presented each of the Moms with a bag full of lovely gifts that the camp provided.
Steven then took a turn on the tower and did the zip line. Boy, did he FLY!!!!!
After lunch each family selected a handmade quilt and afghans to take home. We were also given a puzzle of the grounds which will be neat to glue and frame!
It was truly a wonderful Mother's Day weekend for all!

Thursday, May 8, 2003 4:29 PM CDT

Hello everyone. It has been an extremely busy week since my entry last Friday. I'll run down the highlights in a moment.
Today was Nicholas' weekly clinic visit. He received his monthly antibiotic (IV) and 2 chemotherapy medications. His blood counts were very good! It was a very long visit, but the results were all good.
Last Friday Kaeley had softball. Saturday she had her opening day parade and then we went to the Rock Cats game with the McGraths (fun!!!).
Sunday morning Uncle Ed/Auntie Ann and Uncle Earle/Aunt Jo-Ann pulled into the driveway on their Harleys. That was very exciting! They participated in the Miracle Ride for CCMC. We met them at the picnic afterward and saw LOTS of motorcycles! We saw Dr. Hight (Nicholas' surgeon who coordinated the ride). Nicholas and Dr. Hight shared a BIG hug!
Monday I participated in an all-day event for mothers of children with cancer. In honor of Mother's Day, the organization, Time For Life, arranged for about 40 women to be pampered for the day (hair, nails, make-up, massage, breakfast, lunch and dinner). While I was having a lovely day, Nicholas had fun at school and at Brigid's house!
He enjoyed a great week in school preparing for today's Mother's Day Celebration. The children sang a few songs, handed out precious hand-made gifts and we all ate cake!
This is the weekend we go to the Hole in the Wall Gang Camp in Ashford, CT. We are all very excited about it, especially Nicholas.
Daily we count our many blessings, most notably how well Nicholas has been tolerating his medications. Thankfully he experiences few side-effects so we have been able to participate in many wonderful opportunies. All of these fun events give Nicholas things to look forward to and seem to make the weeks fly by!
I will be sure to post an update after our camp weekend. Happy Mother's Day!

Friday, May 2, 2003 7:26 PM CDT

It's been a week since my last update when I shared the great news of Nicholas' CLEAR CT SCAN!!!!!
Last weekend we went to visit Paul Newman's Hole in the Wall Gang Camp where we will be spending Mother's Day weekend. We took a nice walk on the grounds and all got really excited for the fun family weekend. It is not what we expected...NO roughing-it! It's more like a resort with nice cozy cabins. We are promised a weekend of "activities, games, surprises, laughter, great food, friendship and an abundance of frivolity." I will be sure to share the highlights when we return.
On Thursday Nicholas received a special visit at his school from ROCKY, the mascot of the New Britain Rock Cats! This special event was set up by Daddy! Nicholas grinned ear to ear the whole time! I read his favorite baseball story to the class and then ROCKY signed autographs! Before ROCKY left, Nicholas got to see the Rock Cats van that ROCKY drove to his school! That might have been his favorite part!
Today was our visit to the clinic. Nicholas had his weekly blood-draw and received 1 chemo. med. (vincristine). There were some tears, but Dr. Hagstrom juggled rainbow balls for Nicholas, so there were smiles too.
This weekend should be filled with more fun. Saturday we have plans to attend a Rock Cats game with our friends, the McGraths. Sunday Uncle Ed and Uncle Earle plan to stop by on their motorcycles! They are participating in a ride to benefit Connecticut Children's Medical Center in honor of Nicholas!
More next time!

Friday, April 25, 2003 4:54 PM CDT

GREAT NEWS!!!! Nicholas had his CT SCAN today of his head and chest. Both were totally NORMAL!!!!! We completely expected that news, but it is still very reassuring!
Nicholas had the tests without sedation which was just awesome. I was able to sit on the table and rub his head. Steven held his hand and Pa rubbed his feet.
His blood counts today were great. He has rosey cheeks and has been feeling great, so we thought his counts were going to be okay and they were!
He received his second dose of chemo. for the second quarter. June 19th will be the final med. of this quarter marking the 1/2 way point (with no delays). That will be just in time for his fifth birthday!
More news on our super boy next week! Please sign the guestbook!

Thursday, April 24, 2003 5:40 PM CDT

We are home,safe and sound, from a wonderful trip to Vermont. Both children enjoyed seeing the pretty mountains and SNOW!
Nicholas has been feeling GREAT and has been full of energy. Tomorrow he has his CT scan and his weekly chemo. I will update this page tomorrow night with the events of the day.

Thursday, April 17, 2003 5:17 PM CDT

Hello~ Nicholas had his clinic visit today and officially started the second quarter of his treatment plan.
But first, we started the day at 7 am at the plastic surgeon's office for a 3 month follow-up visit. The doctor is pleased with how the incision is healing. He explained that the scar will gradually fade over time.
After school we came home for EMLA and Nicholas had the usual anxiety. He fell asleep in the car on the way to the clinic, obviously tired from what had already been a busy day.
At the clinic he did very well. He had a few tears, but was calmed quickly. He was able to play with his buddy, Arian, to pass the time while we waited for bloodcounts. We even got to see Mrs. Clarkin and Jennah!
Bloodcounts came back great, so Nicholas received his anti-nausea med. (during this he played Leggos and ate popcorn that Jennah bought for him!) Then he received his two chemo. meds. which takes about two minutes total. He barely flinched when the nurse took the needle out.
On the way home he insisted that he wanted to go bowling, but we explained that Mommy and Daddy were tired!!! We promised to try to go bowling on our vacation!
At the moment he is gobbling up a meatball grinder and wants fish sticks too!
Both children have spring vacation from school next week, so we are off to Vermont! They are both very excited!
I have learned that I had an incorrect web address to access my sister-in-law's PMC profile as mentioned in my last entry.
Please try: www.PMC.org then, when the purple and red screen comes up, click on PMC PROFILES. Then type in Carol Vincent in the spaces provided.
Be sure to check out the beautiful photographs she has recently added. In one, you will see Steven and Carol's uncle, Dave Bancroft.
Thank you for all of the love and support! We feel blessed to have such wonderful friends and family in our lives.

Tuesday, April 15, 2003 5:53 PM CDT

Hello~ The children are much better this week. Both continue to have slight coughs, but they have returned to school and have even been able to be outdoors due to the welcome change in weather.
Thursday marks the first day of the second quarter of chemo. I will update this page with his experiences later that day.
I'd like to take a moment today to encourage everyone to check out
www.my.pmc.org click on pmc profile then type
Carol Vincent
On August 2-3 my sister-in-law, Carol, will be riding in her 6th Pan Mass Challenge. The PMC is a bicycling event which raises MILLIONS of dollars for the Jimmy Fund each year (15.3 million in 2002).
Each year we have been so proud of Carol's amazing efforts in this endeavor. She trains throughout the year to prepare herself for the 192 mile, 2-day trip from Sturbridge to Provincetown, MA. This year, however, her ride holds even more meaning as she will be riding with Nicholas in her heart.
On the evening of Dec.2, 2002 when we learned of this diagnosis Carol rearranged her busy life and arrived here at 11:30 pm to support us in the first hours of our grief. She spent many hours with us throughout the first weeks as we tried to get our footings. She accompanied us to the Dana Farber Jimmy Fund Clinic in Boston for our second opinion.
As you will read in her profile, this visit to the Jimmy Fund Clinic had significant meaning to her. She was able to see the PMC bridge for the first time and witness just a fraction of the amazing work that is done there on behalf of children with life threatening illnesses.
Over the past few years it has become tradition for the Vera children to help Aunt Carol decorate her helmet the night before the race (to make her easy-to-spot along the route). This year maybe Nascar flags and hot wheel cars will be the theme for that helmet in honor of Nicholas!
We'll keep you posted on that!
In the meantime, if you would like more information about the race or how to sponsor Carol in this event, please check out her page.
Thanks, as always, for checking in.

Friday, April 11, 2003 7:46 AM CDT

Hello again. Sorry I didn't post an entry after Wednesday's clinic visit.
Both kids were wiped out, so were Mom and Dad!
Nicholas experienced A LOT of anxiety at the time I applied the EMLA cream on Weds. He had not been accessed for 13 days and was surely getting used to living without that. Steven came home and we all went to the hospital. Kaeley set herself up in the office with one of the secretaries!
Dr. Altman was away again, so Dr. Hagstrom checked Nicholas over. He said that his ears appeared infected, not just red and that his upper respiratory infection could also be Restrictive Airway Disease (A.K.A. Asthma). At this point he is not going to put him on an inhaler (we don't think Nicholas would cooperate anyway). If Nicholas has another incident of wheezing in the near future, we'll probably have to try.
Dr. H. suggested the use of Versed (hope I spelled it right) prior to accessing Nicholas' port because he could see how anxious Nicholas was. Nicholas has had this drug once before surgery. It makes him drunk-ish and supposedly causes amnesia about the events that take place while it's working. Nicholas put up quite a fight taking it (orally). 15 minutes later he was very giggly, but he snapped to attention and got just as agitated as usual when his port was accessed.
He received his monthly antibiotic which helps to prevent a certain type of pneumonia and he got a dose of ceftriaxone (antibiotic for his current symptoms). He was once again very upset when the needle came out.
He was surely one tired little guy when we left the hospital.
He continues to have a cough, so he's missed the rest of the week of school. He has another oral antibiotic to try to clear up the ears once and for all. Is fruity flavored, so it hides well in Sunny Delight....hurray!!!
Kaeley has missed the whole week of school and has actually enjoyed spending A LOT of time on her missed work. She feels pretty good during the day, but continues to cough quite a bit at night. She misses her friends but told me she is having fun being home. She and her brother have been great pals this week.
In closing I would like to congratulate our wonderful neighbors, The Burrs, on the birth of their first grandchild. Hazel Virginia was born on Weds. April 9th! The Burrs will be AWESOME grandparents and we are very uplifted by their great news!

Tuesday, April 8, 2003 3:53 PM CDT

Hello everyone. Lots has been going on in the Vera household since my last entry.
Friday night Steven and I enjoyed a night out on the town compliments of several of his co-workers. They sent a card home addressed to ME (so sweet of them!!) with lots of good wishes and a gift certificate to the movies for two complete with popcorn and sodas, gift checks to dine out and babysitter money besides! We had a great, relaxing evening and the children LOVE their babysitter, Emily.
On Saturday, out of the blue, Nicholas broke out in hives. The doctor said to give him benadryl and keep an eye on him. The hives went away shortly after his meds. and he slept like a baby. Sunday he broke out in hives again. Once again the doctor told us to give him benadryl. If the hives returned on Monday we were told we would have to bring him in. They never returned. Quite a mystery.
Monday both children had coughs so I kept them home from school. By this point they were both stir crazy! We made Easter crafts, decorated our Easter eggs and watched "Overboard" with Goldie Hawn to pass the time.
Today I let Nicholas go to school because he was full of energy, his cough was better and he had no fever. I called the doctor and asked to have him seen at noon time just to be sure he wasn't wheezing. (If he had any signs of chest congestion they would not allow him to be sedated Friday for his CT scans.) I kept Kaeley home as she was worse and had an appointment for her later in the day.
At Nicholas' appointment the doctor did hear wheezing, so he sent us to have a chest x-ray. Once again Nicholas was a little angel. The x-ray showed that the pneumonia was gone, but now he has an upper respiratory viral infection. SOOOO, tomorrow Nicholas will have his monthly antibiotic IV ( we couldn't do it today because we had to get to Kaeley's appointment!) The CT scan has now been postponed for a couple of weeks. Chemo. session #2 starts next Thursday.
At Kaeley's appointment I learned that now SHE has pneumonia. She also has the start of an ear infection.
So, we will be home doing more crafts, cuddling and watching movies for a while longer!
Thanks for checking in! More tomorrow after Nicholas' clinic visit.

Thursday, April 3, 2003 1:31 PM CST

No Clinic Today!!! Nicholas and I celebrated by having pizza for lunch with friends. It is soooo nice to have a week off from going there.
Nicholas is doing well. He has not fully grasped the reason why we don't have to go to the clinic this week. He's asked each and every day if it is "doctor day". I always answer by saying "I don't think so" because I've learned that fevers come upon us suddenly.
The really confusing part to him has been taking oral medicine for the ear infection and the medicine for thrush. He has decided that taking the medicine at home is in place of going to the clinic. It's been tough to change that train of thought.
If I haven't mentioned it before, Nicholas is awful about taking oral meds., so we've had a struggle all week. Earlier in the week he was getting so upset that he was gagging each time. Just to get 1 1/2 tsp. of meds. into him was taking 30 minutes (drop, sip of water, drop,etc.)
This is all a control issue because the med. is bubblegum flavor which he recently loved. I spoke with the doctor about alternatives and none were pleasant (port access daily or a nasal gastric tube). So, we've just been firm and consistant (feeling like meanies!).
He'll be done with both meds. in a couple of days....yahooo!
Next Friday is our next scheduled hospital day which involves sedation, a head and chest CT and his monthly IV antibiotic (no chemo.)
Although the doctor has said he expects to see nothing, I can't help feeling very anxious. To make matters worse, this morning I noticed two tiny whiteheads on the incision line. I called the clinic and was told to keep an eye on them, that they are probably just whiteheads and they will be gone in a day or two. Now even a pimple can send me into a panic! Puberty is going to be tough on ME!!!!
Happy Spring!

Thursday, March 27, 2003 4:33 PM CST

Today we returned to the clinic and learned that Nicholas' bloodcounts were all EXCELLENT!!!! The two weeks off from chemo. really showed. He was able to resume his chemo. schedule, so he had his anti-nausea med. and actinomycin today. He was a trooper through it all. He had very little anxiety today!!
Dr. Altman is away at a conference so we dealt with another doctor who was very fun-loving and very informative. (Great for Nicholas AND for Mom and Dad!) He did say that Nicholas still has red ears, so he has prescribed a stonger amoxicillin -Bubblegum flavor!!! Nicholas also has a slight case of thrush (tiny little white patches in his mouth), so he has to take another med. for that.
The really good news of the day is that Nicholas can take next week off from going to the clinic! His counts were so good, that the doctor does not feel that he needs to check the blood next week.
So, we are officially 1/4 of the way through the meds. Two weeks from now we will go back to the clinic for Nicholas' monthly antibiotic and to have a head and chest CT (under sedation). A week later the 12 week cycle starts again.
As always, thanks for checking in and for all of the love and support!

Tuesday, March 25, 2003 10:05 AM CST

Hello Everyone!
We returned yesterday from a wonderfully relaxing trip to Block Island. We left CT on Friday morning and had an eventful ferry ride. Steven, Kim and Kaeley all were terribly sea-sick as Nicholas sat by and was totally fine!!Once we arrived on the island we ALL were much better. Our hotel was lovely, the weather was spring-like and gorgeous! We took walks on the shoreline. We saw deer, pheasant, bunnies, seals and ducks. We took a tour of the island in a 6-seater airplane!
Nicholas was so relaxed and full of giggles the whole weekend! He showed steady improvement from his pneumonia the end of last week, so we felt comfortable being away.
This week he should finally receive the final med. of the first quarter. I'll keep everyone posted! Thanks for checking-in and please remember to sign the guestbook!

Tuesday, March 18, 2003 6:25 PM CST

*SECOND ENTRY OF THE DAY*
This afternoon Nicholas' temp. went way up and he could not stop coughing, so we were instructed to return to the clinic. (We were only home for 10 hours). Dr. Altman listened to his lungs and decided to do a chest x-ray. Nicholas has been very frightened by any type of scans or x-rays in the past, but today he felt so awful that he didn't protest. He sat still like an angel for the x-ray! Such a good boy! Dr. Altman reviewed them as I sat watching, nervously. I saw him look at them with a surprised look and then turn toward us with a frown. He told us to meet him upstairs after he reviews them with the radiologist. I was terrified that he saw more Rhabdo. (The lungs are the first place DR. Altman said he would check at his quarterly review.)
He came in the room and told us that there is no sign of Rhabdo! However, Nicholas has pneumonia. He ordered bloodcounts which came back good, and ceftriaxone again. He sent Nicholas home with an oral antibiotic too. Dr. A. expects this course of treatment to work, so hopefully Nicholas won't have to be hospitalized.
He assured us that Nicholas can continue to be active in school after a full day on his meds., but we plan to keep him out the rest of the week. He's tired from the ordeal last night and needs a few days of R & R. Plus, Dr. A. said we can still go to Block Island for a long weekend if Nicholas is showing improvements. So, rest is key!
Nicholas won't be receiving his chemo. again this week to give his body a chance to recover, so we are faced with another 1 week delay. Disappointing, but we love to see those blood counts climb!
More on the Greatest Boy in the World tomorrow!

Tuesday, March 18, 2003 10:22 AM CST

The Luck O' the Irish was not exactly with us yesterday. After a wonderful day at school and some outdoor play, Nicholas spiked a sudden fever at bedtime. We left for the hospital just before 9pm. He slept through having the EMLA applied and had only a few minutes of upset when his port was accessed.
His ears looked good and his blood counts had improved since last Thursday. So, he received the standard IV antibiotic, (Ceftriaxone),and we were sent home at 3am!
Today he is watching TV in our bed, drinking lemonade and munching on a few SKIDDLES! A real treat to have CANDY, especially in Mommy and Daddy's bed!

Monday, March 17, 2003 11:42 AM CST

Happy St. Patrick's Day! Nicholas is feeling well and enjoyed a nice weekend. Yesterday we went to a Wolf Pack game and sat in the general manager's skybox! Daddy arranged a wonderful time for the whole family and we included our friends the Kennedys. Nicholas and Kaeley made banners for the team and 5 of the players came up to sign it! With our binoculars we were able to look down into the crowd and found many of our friends! (The Chaffees, the Botterons, and the Weinsteins!) The general manager came up and visited Nicholas personally and gave him a green Wolfpack hat with a shamrock on it to wear to school today! It was a great day.
Today we are enjoying beautiful weather for the first time in ages. It's almost 70 degrees outside...Spring is coming in 4 more days!

Friday, March 14, 2003 10:42 AM CST

Well, things didn't go quite as planned yesterday. We arrived at the clinic prepared for the final med. week in the first quarter. Nicholas had a temp of 99.4 (which went up to 99.9 while we were there) and the beginning of an ear infection. (He had a runny nose and watery eyes all week, but no fever).
His blood counts came back and weren't great, so the doctor decided to postpone chemo. for a week. So, Nicholas received an IV antibiotic and we were sent home. This postponement bumps everything out one week, so this hit me hard. The last day of meds. should now be Nov. 27th rather than Nov. 20th.(no guarantees, though)
I spoke with the doctor about the anxiety Nicholas is experiencing each treatment day. Once again he assured me that it will pass. Nicholas was distracted by Pa when I put the EMLA on yesterday, so he barely noticed. However, at the clinic he was very upset when his port was accessed. HEARTBREAKING.
Afterward we all went home to meet up with Kaeley and Gee. Pa treated us all to dinner at Macaroni Grill (Nicholas' choice) to celebrate Daddy's birthday. So, we ended a disappointing day on a very nice note.
Today Nicholas is feeling well and enjoying some new motorcycles from his prize box compliments of his Nanny and Poppa Vera.
As I've said before, the love and support from our family and friends is what is getting us through this year. Thankyou to each and every one of you!
Don't forget to sign the guestbook!

Friday, March 7, 2003 7:09 AM CST

Hi Everyone,
Thanks for checking in. Yes, we made it to the clinic yesterday despite MORE SNOW!!! Steven made it home from a meeting in Boston after a grueling 3 hour drive.
Nicholas had anxiety about having to go to the clinic, but allowed me to put the EMLA cream on without resistance (a lot of tears).
We talked to the doctor about the upcoming med. break (next week he receives actinomycin, then he has two weeks off from meds. before we start the 12 week cycle again). He said that Nicholas will have a chest xray at week 12 and possibly a head CT, but the doctor is not expecting to see anything. In fact, he was considering not doing the Ct scan because he is so confident it will be clear!!! However, after we all discussed it, I think we are going to opt to do the scan to have a baseline now that the surgical site is healed.
We had to stay at the clinic for about 2 hours total because Nicholas received his monthly IV antibiotic. After playing a video game with Daddy he fell asleep in my arms before the med. was done!
We had a bite of dinner at Friendly's and headed home. Despite the nap, Nicholas was asleep for the night at 9pm.

Monday, March 3, 2003 3:28 PM CST

Nicholas had a good day today. He went to school and had fun, as usual. At home he painted and played with toy motorcycles. He had a lot of restful time too, which has become a standard part of his afternoons since starting chemo. He doesn't fall asleep, but he rests on the couch and watches tv or plays quietly.
This morning when I was dressing him I pulled a white turtle neck on over his head and noticed quite a bit of hair had come out onto it. That hit me hard because his hair loss has been so gradual so far. He continues to have hair covering his whole head, but it is noticeably thinning.
We continue to be thrilled that he is feeling so well and can enjoy all of the things a four year old should be doing. Fortunately, he's not bothered by his hair changes to this point. He is getting quite a collection of hats, but so far isn't interested in wearing them for long!

Sunday, March 2, 2003 10:01 AM CST

Nicholas is doing great today and had a peaceful day at home yesterday. We haven't heard from Dr. Altman about the blood culture yet, and no news is good news, so we're hoping we are home-free!
:)

Friday, February 28, 2003 2:09 PM CST

This morning Nicholas woke up with a fever of 100.7. After a cool bath, a popsicle and lots of ice water his fever was 100.9. (Any fever over 100.0 means he has to go to the clinic for blood work.
Steven was in his last day of the State survey, so Pa came to the rescue again (from across the state) and met us just as we arrived at the clinic.
We went in and his fever was up to 102.8! He was very sleepy and had little energy.
His Doctor checked him over thoroughly and ordered IV antibiotics and approved a dose of Tylenol. Nicholas fought having the tylenol and protested while having his port accessed, but we managed to accomplish both and in no time his fever was down.
We were able to leave the clinic and even had a bite of pizza...{what else? :)}on the way home. Five minutes in the car and Nicholas fell asleep and has been sleeping ever since.
If the fever does not return, we are home-free. If his fever returns tomorrow, we have to repeat what we did today. Most of the bloodwork came back and that is fine. We are just waiting on a culture which takes a minimum of 24 hours. If that tests positive (bacteria) then he will have to be admitted for a couple of days.
I will keep everyone posted!

Thursday, February 27, 2003 2:41 PM CST

Hooray! One more treatment behind us! Today was the 8th treatment. He has two more weeks of treatments and then two weeks off from meds.!
Today started with a fun day at school. He was a bit anxious this morning about the agenda for the day. He knew it was "Doctor Day" and expressed such at school. His wonderful teacher came up with an idea in keeping with the beach-week theme. She passed around a soft stone from the beach and had each child rub it to give Nicholas good wishes and strength for today. He had me carry it in my pocket.
As I've mentioned, putting on the EMLA (numbing)cream is usually a tough time. Today I gave him a choice of having it covered with purple saran wrap or the usual clear Tegaderm. He seemed very empowered by having a choice, and went with the Tegaderm with NO FUSS! Creativity and options are the key, I think!
Daddy is in the middle of State Survey at work, so we asked Pa (Kim's Dad) to come along for moral support. We met Pa for lunch and then went to the hospital. The change in routine seemed to be a good thing too.
Accessing Nicholas' port went a bit better than last time. He was able to sit on my lap, but did protest quite a bit (and who could blame him?) An extra nurse came in to assist, but Carol (his favorite nurse at the clinic)was able to access him in one try. He received one med. this week and had blood drawn. We were only there about a half hour.
On the way home he fell asleep in the car and is still sleeping on the couch.
We feel blessed that he is feeling so well. He has never complained of nausea and very rarely complains of an ache or pain in his extremities. His hair is gradually thinning, but if that's the biggest side-effect, we'll take it!
Thankyou for your continued support and prayers. The outpouring of love, kind deeds, and well-wishes are what is getting us through!

Wednesday, February 26, 2003 9:46 AM CST

Greetings on ANOTHER below-freezing day...ugh!! However, Nicholas went off to school today in his bathing suit! (All covered-up, of course!) It is BEACH DAY at nursery school, so he's at least pretending it's warm!!!
This week was the first time he has asked daily if it is "Doctor Day". He asked this morning if it's today, then said "well, is it tomorrow?" When he thinks about it he looks so sad, but he quickly shifts his attention to something else.
Hopefully tomorrow will go better than last week. I'll let you know!
Thankyou for all of the fun, loving messages to him! He enjoys hearing his "mail"!

Sunday, February 23, 2003 6:39 PM CST

Hello everyone,
We are at the end of a nice, side-effect-free weekend!
Kaeley came home from her Gee and Pa's house on Saturday. We all missed her! Daddy went to a hockey game in the evening. We stayed home and cuddled, watched 2 videos and ate lots of popcorn!
Today we went in to Hartford and had a nice lunch and then went to a Wolfpack hockey game courtesy of our friends The McGrath's (thanks guys!) We all had a great time. Two minutes were left in overtime, the score was tied and Nicholas decided it was time to go home. He amazes us at how well he knows his limits and follows his body's signals. We packed up and exited the door just as the buzzer sounded (game ended in a 2-2 tie.)
We appreciate all of the love and support from all of you. Please remember to sign the guestbook (see link below).

Friday, February 21, 2003 7:11 AM CST

Greetings! We're back in Vernon after an overnight in Brookfield. The children are still on school vacation, so we decided to make our first venture out for an overnight in quite a while! We've been very nervous to be too far away from the doctor, but I was reassured that it was only a one hour drive to get back to CCMC, so we were off! The children and I left Vernon on Weds. morning and had a great 24 hour getaway, although we all missed Daddy!
The children baked brownies with Gee and played indoor beachball with Pa (to name a couple of the highlights!)
We saw Great Grammie "B" who turned 90 in Dec. and saw Great Grandma Sedor. We hadn't been "west" to visit since the fall, so she was happy to see the kiddos!
Yesterday morning after a fun trip to Stew Leonard's (a great store), we returned to Gee and Pa's and had to get ready to go for Nicholas' weekly appointment.
Typically I am home alone with him when it is time to put the EMLA cream on. It is usually a heartbreaking battle (it's painless, but Nicholas knows that it's then time to head to the Dr.) I always give him a treat from his "treat box" (an idea started by his Aunt Biz-he receives a book, a matchbox car or some other little token as a distraction/prize for being so brave). This week I gave him a whoopie cushion which he LOVES. He barely noticed the cream!
On the way to the hospital (about a one hour ride), Nicholas fell asleep. Once in the parking garage, he woke up and the battle began. I could barely get him out of the car. He was very upset to be back and let his emotions loose. I had to carry him into the hospital and he was totally inconsolable. Shortly after we arrived, Daddy came in, but Nicholas still was very distressed. He refused to stand on the scale or have his BP checked. He actually became combative and this made it impossible for him to have his port accessed just sitting my lap like he usually does. A team of nurses came in and had to help. After having his port accessed, he cuddled with me for quite a while and then was ready to play while we waited for blood counts. They came back 2 HOURS later and were GREAT, so he received his anti-nausea med. over 20 minutes and then got his two meds and flushes in a matter of minutes and we were able to leave.
It was a very tough day for him. The social workers explained that his reation at this stage is not uncommon and that he is just trying to exert some control. They promise us that it will get better.
We arrived home and Nicholas really wanted pizza for dinner. After a day like that, who could refuse? So, we went to his favorite pizza place and he played songs on the jukebox! A nice ending to the day!

Tuesday, February 18, 2003 4:01 PM CST

Hello everyone,
Today was a good day. Both children are on school vacation, so they were able to play together all day long!! We've played UNO, made cookies, played play doh (a favorite pasttime in this house!), done several watercolors and watched part of THE MUSIC MAN (taped from Sun. Disney on TV).
It was "spitting" snow/sleet quite a bit of the day, plus Kaeley just got over a cold/cough/fever, so we were indoors, but we certainly made the best of it!
Nicholas has been enjoying the entries from everyone. Be sure to sign the guestbook as he does enjoy hearing from you.
We were figuring that Nicholas is a bit more than 1/8th of the way thru chemo. He has (4) 12 week cycles in all and he's having his 7th treatment this Thurs. The last two weeks of every cycle are med free weeks (there will be blood checks and probably CT scans) The med free weeks give his body a break and a chance to recover a bit from the strong medicine. We look forward to those weeks.
Thanks for checking in! More next time!

Monday, February 17, 2003 4:18 PM CST

Hello Everyone.

Today is the perfect day to start our web page. We are experiencing the BLIZZARD of 2003!
Nicholas is having a very good day. He's enjoying the view from the living room window. Occasionally a backhoe with a plow on the front goes by....verrrry exciting!!
Nicholas had his 6th treatment this past Thursday. 6 weeks done out of 45!!
He is feeling very well, experiencing only some minor side effects to this point. He has had no nausea or vomiting. He has had some minor aches and pains, but they are quickly relieved with tylenol. He still has a full head of hair, just a bit thinner.

Yesterday the Make A Wish ladies came to the house and he made his wish! He wants to go to Disney World and drive the "race cars" (like go carts). It is tentatively planned for Feb. 2004...a very nice trip to look forward to.

Please remember to sign in and offer a message, joke, words of encouragement. We have a very brave boy who needs everyone's support, prayers and love!! Thankyou.

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