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Thursday, June 3, 2010 12:58 AM CDT
Has it really been that long since I've updated Devon's page? We are all doing well I'm happy to report and Devon is busy with baseball, school and everything else that fourth grade boys are interested in...including girls!
The boys will be getting out of school in a couple of weeks and we are planning to be in Italy and Paris this summer! We are so excited and the boys can't wait to visit Grandma and Grandpa and to visit the Eifle Tower. It will be so great to be back and I've already contacted a couple of friends whom I'll be meeting up with in Paris.
We are all planning to ride the PMC this year. Devon and Darren will ride in the Kid's PMC, maybe on June 13th up in Hingham. I haven't registered them yet but we were planning to go up to Boston that day to visit Grammie and Papa.
Steve and I will be riding the 1 day PMC so I'll need to start my training to get into shape by the beginning of August.
Thanks for all of your continued support. We're at a really good place in life right now.
Wednesday, October 14, 2009 9:48 AM CDT
Where does the time go? All of us in the Sundquist household are doing well. The boys are back into the routine of school (Devon in 4th grade and Darren in 2nd)and it seems that the weeknights are filled up with sports and other activities.
We just had a fun weekend with our neighbors, the Worthingtons, at Great Wolf Lodge in Pennsylvania. It's a huge indoor water park complete with a wave pool, numerous tube slides, a lazy river tube ride, etc...all of us had so much fun! The four of us went on a family raft ride down an enclosed slide that went outside and we all thought it was great! Devon's favorite rides were the open slides and he wanted to race everyone down them. I think he beat me everytime!
Devon is really enjoying 4th grade. He has more pojects to work on this year and he seems to look forward to the challenge. His latest one is creating a flower which he is planning to build out of Lego. That should be fun! Right now, he is playing both soccer and fall ball. The exercise is great for him and he even wants to play basketball! Those growth hormone shots are giving him confidence! He will be one, if not the shortest, player but I'm so proud of him for wanting to try out! He told me today that he probably won't make it but he said he can dribble down the court fast and pass it to someone who could make the shot. Makes sense to me!
Darren seems to have found his groove in 2nd grade. He is a perfectionist so he tends to put a lot of pressure on himself. I try to tell him that if he DOES his very best at anything, then I am proud of him no matter what. He kind of listens and then is off to BE the very best. He is very athletic and loves baseball and soccer too.
Steve and I both rode the PMC back in August (my first time!) and we thank all of you who donated to our ride, a cause very near and dear to us.
Tuesday, August 4, 2009 8:49 AM CDT
We hope all of you are enjoying a great summer! I know we are and you can tell from my lack of updates. Before I tell you about our summer, let me just say that we are all doing well and Devon is feeling fine.
Steve and I both rode the PMC over the weekend to help raise money for the Jimmy Fund in Boston where Devon received his treatment 8 years ago. It was my first time riding and Steve's 8th. It was an emotional ride, of course, because a whole swarm of feelings reappear, both good and bad, and its just an emotional journey riding with all of the other bikers that have stories of their own. We sent out pledge letters asking for donations and you have until the end of September to make a donation to this cause that is very near and dear to us. You can either go on-line to www.pmc.org and type in sundquist to make a donation or else send it to our home address (at the bottom of this page) and we'll forward it.
So,back to our summer. We spent a wonderful week with Steve's family up in New Hampshire on Lake Winnapausauke. Most of the family was there and we were celebrating Hank and Evie's 50the wedding anniversary! We had so much fun with all of the cousins, aunts and uncles. One of the highlights was renting a "party boat" where the 10 of us spent the afternoon riding around the lake, having a dance party on the boat and swimming. We even saw some loons!
About a week later, we headed up to Toronto to catch a couple of Red Sox games. The Red Sox won one of the games (on Darren's b-day!) and we had a great time with both sides of the family. At Saturdays game there were 17 of us! We went out to eat at Wayne Gretzky's restaurant and the next day we visited the Toronto zoo. It was a really fun time and the city is so easy to get around.
Our next vacation will be at the end of this month where we will travel up to Vermont, Lake Champlain area, with Steve's family. The whole gang is expected to be up there so we'll have lots of good times once again.
Devon has had numerous doctors appointments over the summer that have gone well. I schedule a lot over vacations and the summer so he doesn't miss too much school. After I finish writing this I need to call his endocrinologist and find out what's going on with his counts since she left a message saying that we will need to decrease his growth hormone after she reviewed his recent counts from last week. She didn't sound concerned so hopefully its nothing major. We've had enough "major" things to deal with to last us a LONG time!
Thanks to all of you who have already supported our PMC ride. We really appreciate it! Enjoy the rest of the beautiful summer!
Love, Laura, Steve, Devon and Darren
Thursday, April 23, 2009 12:35 AM CDT
OK. So one quarter of the year has already passed by and this is my first update for 2009. This is a good sign because it means, dare I say, that we are busy and doing well.
Devon is getting so grown up. Now that he's nine and in third grade, he isn't interested in having me come to have lunch with him at school. I asked him this morning if I could come in one day (this is a new program the school is offerring) and he said, "Mom, I'm in third grade now." Well OK I guess. Where did my little boy go? Isn't it funny how as parents, we teach our children to become independent and when they are, we are not ready for them to be so independent! At least that's how I feel. Anyhow, I'm very blessed to have such a confident and well rounded boy. Steve and I have worked diligently to teach our guys how to become productive and responsible little people and we're very proud of them.
Let me just recap what's been going on in the Sundquist household. Back in February, we went on a Disney Cruise with my parents and my brothers' family. We had such a fabulous time! The boys loved being with their cousins and scouting the boat. We played sports, went swimming, watched movies, saw fireworks, ate a lot and just had a lot of fun spending time together. The weather was cool but compared to the snow and cold in CT, we thought it was balmy.
For Easter, we had all of Steve's family down and over our house to stay for 4 days. It was so nice to spend time with everyone and the boys loved having all of their big cousins down. Jim and Karin brougt their Wii game and that was a huge hit since we don't have one (yes, it's me who is very against video games, tv, etc). The kids played outside in between all of the rain and cold we had and we shared a lot of laughter and good times together during their stay.
April 15th is over and I'm much more relaxed having tax season behind me. Now that I'm working 3 days a week, I have more time in the office to get the work done but it still was a very busy and crazy time for me. The boys like telling people that I work a lot and prepare taxes.
Baseball season is in full swing and both boys have moved up in the league. Devon is in AA and will have his first game on Saturday. Darren is in A and did very well at his first game on Tuesday. Steve is an assistant coach for both of the boys' teams. It's all about sports in our house and now that the Bruins have won the play-offs, we have high hopes for them to move on.
We went up to Boston a couple of weeks ago and Steve and the boys took Papa out to a Bruins game. The Bruins won and after the game, we met up with them in the Northend of Boston and had a great Italian dinner at one of the restaurants. I spent the day shopping with Evie and my niece, Kajsa, in Boston and we all had a great day.
Devon is still on his growth hormones and it does seem to be working. He is growing at a faster pace than before, and you can see how his legs have really grown. With the radiation treatment he had, his growth is a bit stunted but the doctors are hoping that with the growth hormone treatment, he will get up to 5'4'' or so. The palpadima he had about a year ago (the swelling of the optic nerve) seems to be controlled and our last two visits to the eye doctor went well. Whew!
Devon sees his oncologist, Dr. Hagstrom, once a year and we still go up to the Jimmy Fund once a year. We have an appointment with Dr. Rasalpour, Devon's nephrologist, next month and he sees his dentist 4 times a year because of his short roots (again, a side effect from the radiation). Despite the occassional doctor and dentist visits, we are in a much better place that we were 8 years ago and for that we are thankful and count our blessings.
On that note, Steve wil once again raise money for the Jimmy Fund and neuroblastoma Friends for Life fund with his PMC bike ride. This year, I will join him and together, we will raise money and awareness to help other children like Devon, get a fighting chance to beat cancer and experience the pleasure of life.
Thanks for checking in and keeping Devonin your prayers.
Wednesday, December 24, 2008 7:29 AM CST
I can't believe I haven't written since August! The short story is that we are all doing well and the boys CAN"T WAIT until Christmas!
Obviously, things have been busy since I've been so neglectful in updating the site. Devon had his annual Jimmy Fund appointment in the beginning of the month and everything looked fine. He is still taking growth hormone shots every night (what a trooper) and he goes to the endocrinologist every 3-4 months for blood work. He is growing at a faster pace than previously and the prior side effects (headaches, palpadema, etc) have since subsided. So far, it appears to be working and helping him grow.
The boys are really enjoying school and looking forward to the Christmas break. Devon is 9 and in third grade and Darren is 6 in first grade. This year, Devon has begun learning Spanish and he really likes the language. I've worked on trying to teach both of them some Italian but I'm very sporadic in working with them and I am far from fluent myself. It's great that he's getting some formal teaching at school in languages.
I'm now working 3 days a week, about 20 hours, and I love it! I was working 1 day a week for 6 years so I was so ready to go back to doing what I love. It's certainly an interesting time to be in the investment business with the whole economy/stock market crisis but if I can weather this, I'll be more knowledgeable in the future.
We'll be celebrating Christmas eve with my parents and tomorrow morning we'll wake up at our house with the boys. My parents will come later in the day and we'll celebrate with a nice dinner. On Friday, we leave to go up to Boston to visit the whole Sunduist clan at Hank and Evie's. All of the kids and cousins will be there and we're looking forward to a couple of days of catching up and good fun. Then on Sunday, we'll head back to CT and spend the day with my parents and brother's family for our third Christmas. We love this schedule because we can spend some quality time with both sides of the family as well as celebrating our own family traditions.
We wish all of you a healthy and happy Christmas!
Love, Laura, Steve, Devon and Darren
Monday, August 18, 2008 1:59 PM CDT
We are having a fantastic summer! Our trip to Italy was great... beautiful weather, delicious food and wonderful company (grandma, grandpa, cousins Rachel and Ryan, Uncle Jimmy and Auntie Pam). It was so hot that we went swimming 3-4 times a day and usually just before bed so we could cool off. The terrace, with its grape vines and beautiful views, is where we spent most of our time. We ate all of our meals there, relaxed reading books, and of course drank lots of wine and had great conversations. We spent a couple of wonderful days in Venice and the boys were such troopers walking over and across all of the little bridges. We also went on a gondola ride which was a highlight.
Last Sunday, we just got back from spending 5 days up in Vermont on the Isle of La Motte on Lake Champlain with Steve's family. This is our third year going up there and we have such a wonderful time. The kids go swimming, biking and playing lots of wiffle ball. It's so beautiful and peaceful up there. Their cousin Kajsa was there with Grammie, Papa, and Aunt Jody and we always look forward to our 5:01 time with drinks, appetizers and always good conversation.
Our last summer activity is heading up to Toronto to see the Red Sox play! We'll stop in Syracuse and see Rachel and Ryan and then make our way up to Buffalo to see cousins Jim and Karin. We always have a great time with them and I know that Devon and Darren are looking forward to talking Pokemon to their big cousin Jim. There will be 11 of us from the family going up to the game so of course, that's a party in itself!
The boys' first day of school is Wednsday, August 27th. We just went out today shopping for school supplies and last week we were out clothes shopping. It's hard to imagine that both boys will now be in school all day! I'm planning to work 3 days a week. I really enjoy my job and I'm happy to put some more time into it now that the boys will be in school.
Thank you to everyone who has sponsored Steve for the PMC ride. He completed it a couple of weeks ago and did a great job! You can still sponsor him if you'd like by going to the link below or sending a check made out to the PMC-Jimmy Fund and send it to our address. Thanks in advance for your help!
Friday, June 6, 2008 9:59 AM CDT
I wanted to get in a quick update since my last attempt disappeared somewhere into cyberspace. Anyhow, Devon had his follow-up appointment with the opthamologist to check on his swollen optic nerve and the swelling has gone down! Whew! Now we can pretty much determine that the whole cause of that was from the growth hormone he was taking. He is still off of it but we do have an appointment to see the endocrinologist, Dr. Ratzan, when we get back from vacation and we'll talk about whether to start with the growth hormone again at a lower dose. I know Dr. Ratzan believes the growth hormone will help Devon and that if we start at a lower dose, he should do fine. Devon has definitely enjoyed being off of it and not dealing with the nightly shots. We'll deal with that decision after we get back.
I can't tell you how relieved I am to find out that the whole optic nerve thing is a side effect of the growth hormone and not something more serious. It was pretty scary that day/night in the emergency room.
Now that the warm weather is here, we're enjoying our time outside riding bikes, playing baseball and hanging out with the neighbors. We're celebrating Devon's 9th birthday this weekend (can you believe it?) and he's having about 8 boys over for some water fun (slip-n-slide, squirt gun games, etc) It's supposed to be in the 90's so the kids should have fun cooling off.
The boys are enjoying their baseball season and next week, Grammie and Papa will be down to see their last game. They both really love the sport and I can see how much they have both improved from last year with all of their practicing. It's still fun for them which is the most important part and they will practice throwing the ball back and forth to each other. It doesn't seem like that long ago when it was my job to do the throwing!
We're getting excited for our Italy trip. This year, we will be taking the boys to Venice at the end of the vacation. My brother and his family will also be joining us for part of the vacation and its so fun to watch all the cousins together. My Mom and Dad are already over there and are looking forward to all of us being together.
We also have plans to see a Red Sox game up in Toronto with Steve's side of the family. The boys are so excited for this! This will be Darren's first game and they love to spend time with their cousins Jim and Karin. They will see their other cousin Kajsa in July when she will be spending a week with us. We have some other smaller activities planned so all of us are looking forward to a fun and exciting summer!
Steve will be riding in the Pan Mass Challenge this year to raise money for the Jimmy Fund/Dana Farber. We'll be sending out pledge letters soon and I'll have the information for the e-mail donation link once I get it. Thanks in advance for sponsoring Steve and helping kids like Devon. Steve really enjoys being able to give back to such a very personal and great cause.
We have actually updated the pictures on this website so please check them out. As always, thanks for checking in on Devon and keeping him in your prayers!
Tuesday, April 29, 2008 7:39 PM CDT
I have a quick update to let people know what is going on with Devon. As many of you know, we started using growth hormone treatment (GHT)for him at the beginning of March. This entails nightly shots which he has grown used to. He doesn’t enjoy the shots but rather, he tolerates them.
A couple of weeks ago, I had to pick him up from school because he had a terrible headache. It was so severe that he was crying and he ended up falling asleep on my office floor. Devon is not a hypocondriac and he has a high tolerance for pain.l I was concerned enough to call the endocrinologist and asked if this could be a side effect of the GHT. They didn’t seem overly concerned so we continued as usual. He still complained of minor headaches occasionally but other than that, he seemed fine.
A week or so ago, he had his annual check-up for his eyes to check his cataracts (another side effect of treatment) and the opthamologist said he wanted us to go to the emergency room for a head MRI because he had a swollen optic nerve, or papilledema. He said it could be caused by some kind of pressure in the head.
So, off to the emergency room we went. Steve met me there and of course it was very frightening because we were afraid of the MRI showing a tumor growth in his head which could be causing this swelling of the optic nerve. Thank God that the MRI came back normal. The doctors also did a spinal tap to check the pressure and that also came back normal. During the spinal tap, they sedated Devon and inserted this huge needle into his lower back. I’ve heard they are quite painful and I just sat holding Devon’s hands with tears streaming down. It was like déjà vu. Finally, a little after midnight, exhausted both mentally and physically, we were released.
Devon is now off his growth hormone and the doctors suspect that his papillledema was a side effect. He has to go back to the eye doctor at the end of next month to see if it has cleared up. After that, we’ll have to decide whether or not to continue with a lower dose of growth hormone.
Devon is feeling and doing well. He and Darren have both begun baseball and they both love to play street hockey with the neighborhood kids. Thanks for checking in on Devon. We really appreciate it.
Monday, March 10, 2008 11:24 AM CDT
I just wanted to get in a short update to let you know what was going on. Devon began his growth hormone treatment (GHT) this past Tuesday. We went into the doctor’s office and had the process explained to us and he received his first shot then. He receives a shot every evening before bed and he is doing so well with the whole routine. He picks one of the areas to receive the shot (upper arms, thighs, buttocks, or stomach) and keeps track of it on a calendar so that we rotate the sight. Steve and I have been taking turns giving him the shot and we’ve learned that keeping it at room temperature 30-45 minutes before giving it to him is more comfortable. The medicine and “pen” has to be kept in the refridgerator so I’m assuming he can feel the medicine going in when its cold. He is such a trooper and once again, he gives us so much inspiration.
He will be followed every four months with his endocrinologist, Dr. Ratzan. We’ve been told that within 8 months we should begin seeing results. Devon is not growth hormone deficient, his shorter stature is a side effect of the TBI (total body irradiation) he had when going through treatment. Some kids with neuroblastoma have benefited with GHT. There is such a small group of kids to look at but all of our doctors have agreed this is the way we should proceed. Our next appointment is in July.
We are looking forward to Easter because we will have all of Steve’s family with us. Jim (15), Karin (12), and Kajsa (11) will be here and the boys are so excited to see their cousins. Last year, Jim and the boys built a fort down in the woods and Devon and Darren love playing in it and showing it to their friends. Jim hasn’t seen it since last year and the boys are anxious to take him down and show him what they’ve done.
We had a great time down in Florida and we went to the Kennedy Space Center which Devon especially enjoyed. He’s very interested in space and I think his favorite part was meeting a real astronaut. We spent the beginning of the vacation with my parents down in Naples and we had beautiful weather. It was really relaxing because we’d go to the beach every afternoon and it was even warm enough to swim!
Thanks for checking in on Devon. We really appreciate your continued thoughts and prayers.
Friday, January 11, 2008 11:39 AM CST
Happy New Year! We hope you all enjoyed a wonderful holiday with your families. We had a great holiday and celebrated Christmas on three different occasions, which is fun. We always celebrate Christmas morning with just the four of us. The kids ran downstairs to look under the Christmas tree to see what Santa had left. Devon was so happy with his sports stuff (game, bat bag, clothes, etc) and Darren loved his Spiderman toys. It was so sweet because in the middle of them opening up presents, they both got up to give Steve and I something special that they made in school. It was really thoughtful of them. We then went over to my parents’ house and met my brother and his family there for our second Christmas. The boys got more presents that they loved and just enjoyed spending time with their cousins. On Friday of that week, we headed up to Boston to spend our third Christmas with Steve’s parents and his sister and Kajsa. The boys each received a Patriots shirt and a Red Sox shirt! They were thrilled and they’ve worn them at least once a week to school. We had a wonderful time with all of the family and the boys love their grandparents, aunts, uncles and cousins.
For New Year’s Eve, we threw an impromptu party inviting some of our neighbors over since all of us didn’t have big plans. We had raclette, which brings back memories of our time in France and Germany and all of the kids stayed up until midnight! Devon and Darren were so thrilled and honored to be able to stay up for their first time!
Devon had some doctor and dentist appointments over the vacation (poor kid) and we met with Dr. Ratzan, our endocrinologist here in CT, and we are moving ahead with our decision to use growth hormone treatment (GHT). We e-mailed our neuroblastoma doctor up in Boston and asked what her opinion was and she was in favor of it. So, here we go. It’s scary of course to think about it…no one has a crystal ball but all we can do is base our decision on the information we have at hand. The majority of the health professionals we work with, endocrinologists, nephrologist and oncologists suggest we go forward with the growth hormones. Right now, we’re waiting for a call once all of the paperwork has been submitted. We’ve already been warned that our insurance may reject it and that letters; appeals, etc may be necessary. We’ll cross that bridge if and when the time comes. We still need to learn more about GHT but I understand that it is daily shots that Devon will need to take, quarterly office visits for monitoring and blood draw and he will probably continue this treatment until age 15 or so. This has been a huge decision to make. I’ll keep you updated on how it is going once we begin.
Please continue to keep Devon in your prayers.
Monday, October 29, 2007 11:53 AM CDT
We are celebrating here for those Boston Red Sox! Devon and Darren have been following the games and watching parts of them and catching the highlights on ESPN. Steve woke Devon up last night to let him know the Red Sox had won. Steve taped the game for them to watch and this morning over breakfast, they watched the bottom of the 9th and saw the celebration too. They were thrilled!
Over the weekend, Devon and Darren both had Halloween parties for their classmates at our house. The kids had such a great time. We had Darren’s on Friday afternoon with 15 kids and Devon’s on Saturday with 14 kids. It rained the entire day of Devon’s party so I had a bunch of wild 2nd graders running around my house. For Darren’s party, we stayed outside for a while and played Sticker Tag and did a Treasure Hunt. The kids enjoyed decorating cookies at both parties (who doesn’t like globbing frosting, sprinkles, M & Ms , etc all over a cookie?). Steve said this was the last Halloween party we would host but I think I can talk him into it again next year with some concessions. We’ll see.
Everything is fine here. I am planning to call and find out the results of Devon’s growth hormone testing he had done a few weeks ago. We’ll need to meet with the endocrinologist and decide if we want to proceed. Devon has his annual appointment at the Jimmy Fund next Tuesday so we’ll talk to the doctors up there again and decide how to proceed.
Devon and Darren have enjoyed their soccer season and they have 2 games left. Devon also finished his Fall Ball program and really enjoyed playing baseball with a group of boys who really love the sport. Devon wanted to sign up for basketball and will be starting that in December. It’s wonderful to see him so active and enjoying all these different sports with his friends.
Both boys are really enjoying school. They go to school with smiles on their faces and come home with a smile on their face. So far, I’ve been very pleased with the school system here. Devon was getting a lot of homework in the beginning and was being challenged. He has come such a long way with his reading and he especially enjoys math. He loves reading books about space and we are planning to visit Kennedy Space Center when we are down in Florida in February. I found out that I could book a lunch with an astronaut that I think he would really enjoy!
Of course the boys are eager for Halloween. Darren is going to be Spider Man and Devon will be a Clone Trooper (from Star Wars). We’ll probably carve the pumpkins we picked at the pumpkin farm tonight. I’ll need to switch Darren’s pumpkin because I noticed his is rotten on the bottom. I bet he’ll notice its not the one he picked out himself and we’ll have a meltdown. Lovely.
We hope all of you are doing well and as always, thank you for checking in on Devon…we really appreciate your thoughts and prayers.
Wednesday, August 29, 2007 10:02 AM CDT
We have had such a fantastic summer! I actually have a moment to update the website because the boys started school today. Devon is in 2nd grade and Darren is beginning Kindergarten. Both were excited to go to school and Darren insisted on getting to the bus stop about 20 minutes early! The smile on his face as he waved to me from the bus was priceless!
We had a couple of vacations this month which made the end of our summer special. In the middle of August, our family was invited up to Camp Sunshine at Lake Sebago in Maine. We had such a great time! The boys were able to play sports, swim, do arts and crafts, etc. Steve and I also had camp with adult games, a gourmet dinner, talent show, swimming , etc. All of us really enjoyed our stay. The camp is dedicated to kids with cancer and their families so all of the parents we met have traveled a similar road to ours. It was good to meet and talk to different families and hear their stories. The boys loved the counselors! They were great. Landis, was their favorite and she is a senior down in Miami, FL. The boys have corresponded with her by e-mail and sent her a little note with pictures they colored. Devon actually cried the night we came home because he missed her so much! All of the counselors are exceptional people who deal with the children is such a fun and loving way. Many of the counselors were kids themselves is highschool who came up to volunteer for part of their summer. How amazing is that? There are so many good kids out there.
We also spent some time with Steve’s family up in Vermont at Lake Champlain. We stayed at the same house we did last year and all of the cousins and aunts and uncles were there and we always have such a good time. The kids did some swimming, biking and lots of running around the big house. Steve’s family is very fun and drinks and appetizers are mandatory each night out on the porch. We sit and talk while the kids played ball and then we’d have dinner together. It’s very peaceful with beautiful views of the lake right outside our doorway. We spent time reading and playing cards, swimming out to the raft, and just relaxing. It was great except that Darren wasn’t feeling too good with a cough and a fever so we came home a day early. After taking him to the doctors, he had a slight case of bronchitis which cleared up within a couple of days of taking antibiotics.
With the kids in school, I’m back into exercise mode and my neighbor and I hiked for 1 ½ hours right by our house. It’s so nice to be able to put the kids on the bus and then just walk. Plus, I have time to update the website. Bonus!
Devon has a growth hormone testing appointment in October. They will inject him with insulin (to activate the growth hormones) and draw blood at different intervals and compare. I’m not too excited about the test, it poses some risks (as everything does) and he’s already been through so much but we consulted with our doctors and they all seem to agree that this is the way to go. Devon is slipping off the growth curve by a lot (-20% deviation) and they feel that growth hormones may give him a little boost to get him over 5 feet tall. He will never be a tall person which is totally fine with us but to give him the chance to get over 5 feet, we are considering it. We will get the test results in the middle of October and then we will make a decision with our doctors whether or not we will begin using growth hormone treatment. I’ll keep you posted.
Thanks for checking in on Devon. We really appreciate your thoughtfulness.
Wednesday, August 1, 2007 9:20 AM CDT
We hope all of your are enjoying your summer as much as we are. We just got back from a weeks long vacation in the Outer Banks of North Carolina. What a great time we had! We rented a house with my parents and my brother's family in Nags Head. It didn't even feel like 10 people were there because the house was so huge with separate bedrooms and bathrooms for all and a pool. A typical day was swimming in the pool after breakfast, eating lunch, the ocean in the afternoon and Happy Hour with drinks and appetizers before dinner. The ocean water was so warm and we all had fun jumping in the waves. The kids loved spending time together and they all get along so well. We went out on a couple of daytrips to visit the Hatteras Lighthouse and also the Wright Brothers museum. It was really a fun and relaxing vacation!
Devon is doing well. We had a few routine visits in the past couple of months. We just saw Dr. Hagstrom yesterday and he said we can now come once a year! Devon has to see the dentist at least quarterly to keep his teeth in the best shape that he can. He had some loose permanant teeth and x-rays revealed that he has short roots and some teeth have no second set behind them. Devon will have to keep all of his baby molors and take care of the 7 permanant teeth he has for as long as he can. The only thing we can do now at his young age is good oral hygeine. Again, another side effect of the chemo, radiation, etc. he had done when he was going through treatment. In the future, he may be a candidate for implants but we need to wait until he stops growing.
Which brings me to our most recent health issue...he is growing but at a very slow rate. Again, a side effect of the total body irradiation he received when he was a baby.
We have an appointment tomorrow to get a hand bone age scan which will tell us how old Devon's bones are. Though he is eight years old, the bones in your body could be different. We've had numerous meetings with doctors regarding the potential use of growth hormones and this scan tomorrow is just another part of the mix. Nobody really knows how tall Devon will get but based on his height now and projecting out, it may be about 5 feet...maybe not. There is such a small group of children who have neuroblastoma, been on the same treatment, and survived but all of them are very tiny. We never would have thought about this until Devon was at least 5 years out of treatment. Now that he is 6 years out, and with the encouragement from some doctors, we are looking into it. I can't begin to describe the debate you hold in your own head trying to determine what is the best decision. The talking, the reading, the researching, etc. ..it's really a difficult decision. Steve and I have both said that whatever decision we make, we are making the best decision at that time with the information we have. There is no looking back, there is no blaming fault, we just go with it. Of course, Steve and I are scared to death of the cancer coming back. We always are and we always will be. As the doctors in Boston said to us, "If you go forward with this and Devon relapses, you cannot blame yourself." Okay. Easy to say but can we live with it? I'll keep you posted on where we are going with this.
On a more lively note, we are going to Lake Sebago, ME and spending 5 days at Camp Sunshine. It's a camp for children with cancer and their families and I've heard wonderful things about it from some other people. We stay in a cabin and there are lots of activities planned for the kids and adults. I'm looking forward to it and I think the boys will really enjoy it.
So many of you have asked about Steve and his PMC ride. This year, due to some medical concerns (which have since been cleared) he opted not to ride. He is planning to ride again next year and will be doing the fundraising for the neuroblastoma research fund with Friends for Life. Thanks for all of you who have asked about it.
Enjoy the rest of the summer! Thanks for keeping Devon in your thoughts and prayers.
Wednesday, April 18, 2007 2:28 PM CDT
Well, here we are, three months later from my last update and everything is just fine. I had to be reminded by a good friend that its been a while since I last updated the website and she e-mailed me to make sure everything was going well. I really don’t mean to be negligent, but I am just not making the time I need to in order to give you all an update.
We had a wonderful Easter with most of Steve’s family down here and my parents and uncle joining us for Easter dinner. The boys love having their big cousins, Jim (14), Karin (11) and Kajsa (10) over to stay with us. We went out for a hike a couple of times, learned how to pay 4-Square, taught the cousins how to play Around the World, the boys made a fort in the woods, and we went out shopping and out for lunch the day Jim and Karin left. Hank and Evie prepared the annual Easter egg hunt that the kids had fun doing. It was really nice to have all of them here and to catch up with all of our busy lives.
Tax season is finished for me and that’s a relief. I was working a bit extra including Saturdays and working at night. The extra money is always nice but I prefer to have my one-day a week of work at this point in my life.
I have a few minutes to catch up because the boys are outside playing with Jimmy (12) up the street. The kids are on vacation all this week and since today was the first day of no rain in 4 days, the kids are anxious to get out and move around. Yesterday I took the boys to the Children’s Museum in West Hartford. We spent a little over an hour and the boys enjoyed the Lego car building and racing them down the track. Devon had his annual eye appointment and I wanted to plan something fun since I usually have some kind of doctor’s appointment or test scheduled on days off because I don’t want to have to take him out of school too often. In a couple of weeks he has a hearing appointment and then wait until the summer when I have 5 or 6 appointment scheduled! Speaking of appointments, in my last update I was talking about Devon’s appointment with his endocrinologist and she discussed the possibility of using growth hormones. We have an appointment up in Boston at the end of June to discuss with a specialist up there. I’ve decided I need to explore this option and just hear what the specialists are saying so that I can make an informed decision.
Devon and Darren have both started baseball and both were disappointed that practice was cancelled for tonight. With all of the rain we’ve had, the ground is just drenched and we’ll need quite a few sunny days to dry it all up. Devon is in A-ball and plays for the Orioles and Darren is in T-ball and plays for the Red Sox! They look so cute with their cleats and uniforms on.
Steve started his new job at the Travelers insurance company as a forensic engineer in the middle of March. So far, he enjoys it and is learning a lot about what not to do regarding leaving appliances on. I am never allowed to leave this house if the drier is on. Until Steve’s new job, I occasionally left the house while the clothes were still drying and never thought too much about it. Well, after hearing Steve’s monologue of how driers can start fires and how dangerous it is, etc. I am now more informed.
Steve planned a great time out for me and a bunch of friends and family to celebrate my 40th birthday! We headed down to Foxwoods Casino in a limo bus and spent the night gambling, dancing and partying. It was so much fun! Everyone came home with winnings except for Steve and I. One of my neighbors won +$100 on a penny slot machine!
Thank you as always was checking in on the website and keeping Devon in your prayers. We truly appreciate it!
Tuesday, January 16, 2007 1:32 PM CST
Hi everyone! Happy New Year! We hope all of you enjoyed a wonderful set of holidays with your families and friends. Our holidays were fantastic and the boys make our times together so magical. Our next big highlight is our trip to Florida where we’ll be spending 3 days at Disney and then stay with my parents in Naples for 5 days. We haven’t been to Disney since Devon’s Make a Wish trip back in March 2003 so we are looking forward to celebrating special times with the boys at this time in our lives. Darren has no recollection (he was 20 months old) and though Devon remembers it, he was so sick at the end of it that it was difficult for him to enjoy it.
We are doing well. Lots of changes going on here regarding Steve’s job. The Timken division that Steve is currently working for is moving up to New Hampshire. Steve has declined relocating. So, that means he is in the process of interviewing with new companies. He has been with Torrington/Timken for 17 years but a lot has changed in the past few years that just shifted our attention and thinking to other job possibilities. It’s time to move on.
I am still working my one day per week and enjoying it as usual. With tax season coming up, I’ll be working more hours and I’ll be doing a lot more work from home after the boys go to bed. It’s always a crazy time that just flies by.
We were just at CCMC yesterday for an appointment with Dr. Ratzan, Devon’s endocrinologist (growth doctor). The subject of growth hormones came up again and as uncomfortable of a topic it is, I need to gather my thoughts and e-mail all of the other doctors in Devon’s network and see what they think. At one time, some of the doctors were against it saying there may be a chance of the cancer coming back although there has been no conclusive studies on it. At that time, it was easy to make the decision against using them. Now, Devon is 5 years out, knock on wood, and some feel that this is a “milestone” for neuroblastoma patients. So, once again, I am having trouble thinking as I think, research, pray, talk, etc to find out what is the best decision for my little boy. I try to keep it all in perspective and thank God that he is here with us today and the side effects that we are dealing with are really minor in the whole scope of things. The hard part about keeping it in perspective is that he is still dealing with so much for a 7 year old boy (kidney problems, growth and weight issues, hearing, cataracts) that I just want him, and us, to experience life without all these added medical concerns…I know that is not our path but sometimes it’s a lot to deal with.
We are really looking forward to our Florida vacation! I’ll have a more relaxed atmosphere to contemplate some of these issues. Take care!
Saturday, November 4, 2006 3:27 PM CST
Another way over due update. I keep thinking I’ll get to it but I just haven’t made the time. So, where did I last leave off? I think it was over the summer. Anyhow, the boys are both in school, Devon in first grade and Darren in pre-school. Both of them LOVE school which is so nice. Devon has a long day when you add the 45 minute bus ride each way. I often end up driving him one way to shorten the day. It’s too long for a 1st grader. Plus, he needs to get up around 6:30 AM in order to take his med (supposed to take 1 hour before eating) and then we’re rushing out the door at 7:30.
We had a wonderful Halloween trick or treating around the neighborhood and down to my parent’s house. I can’t believe how much stuff they collected from just going to a few houses. The neighbors are so generous and really make nice treat bags for the kids. I’ve had my share of candy already!
Steve is in China and will be back on Thursday. He’s gone for 10 days so I’m doing my best keeping the boys busy with different activities and projects. We were just out in the yard for 2 hours playing in the leaves and running around which felt good. Now, they are both playing downstairs while I try to finish this update. We’ve talked to Steve a few times (its difficult with the 13 hour time difference) but the boys and I leave him voice mail messages and e-mails to let him know we are thinking of him.
Devon is doing pretty well. He already went through the fever virus in the beginning of October and is now just getting over a stomach virus. It’s tough because his immune system is still not 100% and he really catches all kinds of colds, viruses, etc. When he gets the stomach bug, we are particularly concerned because we need to watch out for dehydration and determine if we need to bring him in for IV fluids. Another side effect that we are dealing with is his short teeth roots. His dentist noticed that his permanent teeth were loose and after numerous dentist visits and x-rays it was determined that he radiation has affected his roots. All we can do now is good oral hygiene but he probably will be a candidate for implants sometime in the future. His kidneys are still stable, the medicine is doing its job keeping things status quo. He is very tiny for his age and his weight gain is always an issue and concern. I always try to keep things in perspective and count my blessings that he is still with us and enjoying a very fun and fulfilled life.
I need to sign off here because the brotherly love is starting to wear off and I need to intervene before punches get thrown. Thanks for checking in on Devon and god bless you and your family.
Monday, July 24, 2006 8:18 PM CDT
We are having a fantastic summer! Can’t you tell with my late entry? We spent the last two weeks of June in Italy at the family villa. My parents were there and Jimmy and his family were also there. It was such a wonderful time being all together in the house that my father and Jimmy and I enjoyed growing up in. Life is so simple there that its such a reprieve from the fast and hectic lives we tend to live in the States. Our days consisted of a morning walk to the bakery to buy fresh bread for the day and then to the grocery store to get food we needed. We’d enjoy a wonderful lunch on the terrace overlooking Lake Garda and end lunch with munching on local cheeses, bread and wine. After lunch, we all went down for our siesta and then woke up to a swim in the lake to cool off. Then we would prepare a delicious dinner, go next door for gelato and then go to bed. It was magnificent! We took a couple of side trips, one on a boat ride around the lake to the town of Salo, Steve and I hiked up to an old Roman town called Campo and then of course we went to a couple of outdoor markets (mercato)…besides a few times out to eat, that was pretty much the extent of our vacation and we loved it all.
Now we’re back home and enjoying the lake and swimming a lot. The boys took swim lessons when we got back from vacation and they are doing pretty well with the doggie paddle. Darren is in camp this week (he asked me to sign him up because he wanted to be a big boy) and loved his first day. Devon will be going to soccer camp next month and is looking forward to that. Both boys really got into soccer while we were in Italy and Darren wears his Italian soccer shirt every chance he gets ( I have lots of washing to do) We watched some of the soccer matches together at the ice-cream bar next door and rooted for Italy once the USA was out of it. The boys were even able to play a little soccer with some of the local Italian kids at one of the church picnics we went to.
Devon and Darren both celebrated their summer birthdays with parties. Devon turned 7 on June 27th and Darren turned 4 on July 17th. We had Devon’s kindergarten class over for a NASCAR birthday party which was very fun. Darren’s theme was sports and we had a water sprinkler party which worked out well in the 90 degree heat. Both of my boys are growing up so fast!
Steve is away on business until Thursday night so we’re holding the fort down. His new job is going well and he is enjoying it. He has lots to learn but one of the perks was a trip out to see a NASCAR race which he really enjoyed! Steve is busy training for the PMC which he’ll be riding the first week of August. You can sponsor his ride by clicking on the link below. I’m so proud of him…he has dedicated himself to ride for the past five years and this is his way to give back to help other children facing cancer like Devon. Over the years, Steve has raised over $25,000 with all of your generous donations! Thank you so much.
I am still working one day a week with my parents watching the boys that one day. For me, it lets me keep my hand in my field and I really do enjoy what I do. For now, during this time in my life, this schedule works out well for me.
We finally have new pictures posted and please continue to sign Devon’s guestbook. It’s a little more work to get to it than before but we truly enjoy hearing from all of you. Devon has an appointment next month with Dr. H here in CT and then he’ll be going up to the Jimmy Fund up in Boston in October for his next one. Besides his weight issue (he’s not gaining) I hope that we get a good report. Devon is out running around with his friends and brother and always has a smile on his face. His school mates love him and are always so happy to see him when we are out in town…at Brodie Beach, at a concert, etc…it’s really nice to see.
Wednesday, May 3, 2006 8:16 AM CDT
We are all doing well and I wanted to get a quick update in this rainy, cold day. Steve just got back from business late last night (from Greenville, SC) and the boys were so happy to see him this morning. Jumping on the bed with, "Daddy, you're home" and snuggling with their Dad is what they love to do. They both rambled on about what they did over the past couple of days and getting Steve up to speed about the Sundquist household.
The big news they shared was their trip to the store where they each brought $5 from their piggy bank to buy something new. Devon picked out a matchbox NASCAR (of course) and Darren chose a power Ranger (he loves super heros). They were so proud paying for their own purchases and carrying their own bag. Devon kept saying, "I got my own receipt".
Devon has started baseball and is now in the A league. This is a big step for Devon because they play on the "Big"
field and there is no T... the coaches pitch to them. He is on the Dodgers and he loves it! Yesterday, I offerred to take the boys out for dinner since it was raining and I assumed that practice was cancelled. Well, Devon said he wanted to go home instead (my cooking is just so good!)and wanted to check the messages to make sure that practice was cancelled. Of course it was cancelled but I give him an "A" for dedication at six years old.
Steve and I are very pleased with Devon's eating and he is finally beginning to gain weight! We are striving for 40 lbs by his 7th birthday (he is 4 ft tall). He is probably around 38 lbs now. With the change in med and more exercise, his appetite is increasing. I still try to pack as many calories into the foods he eats as well as getting all the food groups in. Devon isn't much of a sweet eater so he really does eat a healthy diet. Sometimes, a piece of cake or cookie wouldn't be bad though!
Devon is just such a happy and smiley kid. The kids in school love him and his teachers have all good things to say. We are so proud of him! Thank you for checking up on his progress.
Friday, April 21, 2006 8:57 PM CDT
We are all doing fine and I apologize for the late entry. Between tax season and the holidays, time has just slipped by. In my last entry, I was waiting to hear back on Devon’s counts. They came back stable and the new medication seems to be doing its job. Devon is feeling fine and is running around enjoying this wonderful spring weather like he should.
We had both of our families over our house for Easter. It was wonderful! There were eighteen of us celebrating the holiday and we spent the day eating, drinking and enjoying time together. The kids were up early and checked out their Eater baskets and filled their tummies with all kinds of sugar. I gulped some chocolate down too since I gave it up for Lent. It tasted so good! Most of us made it to church Easter morning (I can’t believe we got there for the 8:30 mass and Jon got up and ready in 5 minutes). With the group of us, there were many conversations taking place…most of them centering on “is it time to go”. Our nephew, Ryan, couldn’t stop talking about the Easter Egg hunt Evie was planning at our house and wanted church to end right away so we could go up to the house and find eggs. Our nieces Kajsa and Karin were holding their noses in church because they didn’t like the smell of the incense. The kids were playing musical pews, changing seats, sitting here and there, etc. Considering the long mass and all of the excitement, the kids were really good.
We got back to our house and started appetizers and the Easter Egg Hunt around 11 AM. The kids had a great time searching the yard for the eggs. The eggs were filled with money and chocolate so all of the kids were happy! We just had a great time being together and spending time outside. We even had a wiffle ball game going and some of our neighbors joined in. Our neighborhood is great which leads me to another announcement, which we are happy to share. We’ve decided not to move to South Carolina and Steve has accepted a new job with Timken.
We went back and forth with the pros and cons of moving or not and basically, it came down to family. We just felt that our family relationships were too important to leave behind. Devon and Darren have such a special bond with their grandparents and cousins that moving down south would be much more of an effort to maintain those relationships. We still would have seen everyone, just not as frequently as we do now. We feel good about our decision and having everyone here at our house this past Easter just reinforced that decision.
Thanks for checking in on Devon. I know many have you have been waiting for my posting and I appreciate that you still think of Devon and keep him in your prayers. He’s a really special kid.
Monday, February 27, 2006 2:11 PM CST
I have a few minutes because Devon has a little friend over and all of the kids are playing “rodents” and pretending they snuck into my house when I was sleeping. What an imagination!
Devon and Darren had last Monday and Tuesday off from school so Hank and Evie came down for a few days with our niece Kajsa to help out with babysitting since my parents are in Florida. I worked both Monday and Tuesday and it worked out really well. The boys adore their big cousin Kajsa and she is so good with both of them. On Monday, they were all busy planning a musical show for Steve and I when we came home from work. They put up signs around the house, played instruments (Darren on the trumpet and playing it upside down, Devon on the guitar and Kajsa on the saxaphone) and sang. They even had a program to work from! It was very cute and Evie played her accordian to accompany the songs they sang. It was so great to have them here and I know Hank and Evie were tired after two days of “constantness” with three kids to care for!
Devon had his regular appointment with Dr. Rasalpour, his endocrinologist (kidney doctor) and he is changing one of Devon’s meds (polycitra and Phos-K to sodium bicarbonate) because I’ve been complaining that Devon doesn’t gain weight. Everything that I get in him (which is a chore to begin with) comes out the other end. I think Devon has been the same weight for over a year! I’ve been telling the doctors that the polycitra and Phos-K that I have to give to him 3x day in juice, gives him the runs. It says right on the package that it is a mild laxative. Like so many other meds and procedures, the side effects sometimes complicate the issue that you’re trying to fix. It’s that vicious circle. Devon has been on polycitra and Phos-K for 3+ years to help with his kidney function which is a mess. But, obviously, he needs to gain weight and grow so now we’re trying this new sodium bicarbonate. So far, it’s working out fine. The pills are huge so I cut them in quarters or thirds and Devon is so good about taking them. He still has to take them 3x day and as long as his counts look good (I have to take him tomorrow for a blood draw), we’ll continue on them. Dr. Rasalpour is leaving on Thursday for a meeting and he said he wants “peace of mind” before leaving knowing that Devon’s kidney counts and such are all in order. It’s kind of a bummer that I have to take him back into Hartford so soon (we’ve gotten used to our quarterly Hartford appointments…we’re spoiled now!) and deal with the whole emotional issue of telling Devon he needs to get blood drawn, etc but “I gotta do what I gotta do”.
So, hopefully, the counts come back ok and his kidney level remains constant. Thanks for checking in and please continue to keep Devon in your thoughts and prayers. He is an amazing little boy but he still has a lot of issues that we are dealing with. I don’t often talk about it because I realize that we are at a much better place than where we used to be and for that I am very thankful. But, our lives are far from normal and Devon still has so much to deal with for his young age.
Monday, February 6, 2006 9:27 PM CST
We are all doing well and we are getting excited for our trip to Florida! The boys are looking forward to seeing Grandma and Grandpa and their cousins Rachel and Ryan. They are also excited about going to the beach and playing baseball on the sand. Sunshine, here we come!
We spent a wonderful weekend here with Steve's parents. I worked on Saturday (tax season is here!) and they helped out with the babysitting. Devon and Darren kept them going as usual. We went out to Dakotas for brunch on Sunday which was delicious and then we had fun watching the Superbowl and eating all kinds of good food. It was so nice to have them here for a couple of days and the boys always enjoy the love and attention they get.
I've learned some sad news recently about a daughter of one of my highschool classmates. Their little girl, Katie, was recently diagnosed with lukemia. I think she is 18 months old and she is at CCMC and has the same set of doctors as Devon does. This road is all too familiar for us and I know what those parents are going through. I've e-mailed Lori and her husband and asked to put Katie's info on our website and ask that all of you keep her in your prayers. We have been so blessed to have you in our lives and I feel that one of the best things I can do for Katie and her family is share Katie's story with all of you. Thank you for your continued prayers.
Please visit Katie's website at www.caringbridge.com click visit a page and type in Katiebean.
Tuesday, January 17, 2006 8:07 PM CST
Happy New Year everyone! I hope each and every one of you enjoyed a wonderful holiday with family and friends. We had a great time (as you can tell from my lack of updating!) The boys really enjoyed spending time with family and we celebrated so many Christmases with different relatives, that we really never experienced a “let down” when it came to an end. As a matter of fact, the boys opened up a Christmas present today that kept them occupied for a long time!
Steve is on business so I’ve got the boys in bed and I have a few minutes to myself. Both of them are excited about being back at school. As much as they enjoyed the vacation, Devon especially, needed to get back into a routine. He was really excited to see his school friends and share his vacation experiences with them. I worked at Darren’s school as a sub today and helping out with 13 three-year olds is very fun but also tiring. They are non-stop!
We had a very low-key weekend because all of my boys, including Steve, were sick. They all came down with the stomach bug so I was doing a lot of cleaning from both ends (if you know what I mean) I’m happy to report, everyone is doing well and (knock on wood) I didn’t catch it. What would it be like if Mommy was sick too? I’m also happy to report that we didn’t take Devon in for hydration as we usually do and I think (cross my fingers) that he kicked it on his own which is a first. I have to admit, if he were feeling the way he did over the weekend, I would have brought him to the CCMC clinic if it were a weekday. I’m spoiled (and a little chicken) to bring him into the emergency room for hydration. Since the clinic is closed on the weekends, I would have no choice but to bring him to the ER. Steve and I decided to forego the ER trip in hopes that Devon could kick it on his own and he did. It took him 4 days but he did it! To us, this is a big accomplishment.
Devon was back at school today and all was fine. Phew! He is running around, tackling his brother, and full of energy so I feel good about it. I’m still careful with what I give him because from past experience, it takes a while before he can get back to a normal diet. He’s still eating pretty bland and light things.
What else can I tell you? Oh, we got our wood floors redone and they look terrific. The reason I mention that is because the boys had fun living down at Grandma and Grandpa’s house for a week. My parents went on vacation right after Christmas so we coordinated the dates so we knew we had a place to stay. It was like a long week slumber party for them!
We are excited about going to Florida next month! My parents are renting a place in Naples and we’ll be staying with them. I was thinking about the warmth and the beach while I was out there shoveling the ice off the driveway in order to prepare for more freezing rain tonight. Where is Steve when I need him! I was also running the snow blower on Sunday when he and the rest of the gang were inside in their pajamas feeling gross. Florida will be a nice vacation.
Thanks for everyone checking in and signing the guest book. Have a great day!
Wednesday, November 23, 2005 7:57 AM CST
Another long overdue message but can I tell how wonderful it is not to be updating so often with reports of labs, doctors appointments and hospital visits! Dare I say that our lives are almost normal? Sure, we have doctors visits and blood draws much more often than most families but to us, they have become routine...our new normal.
Devon is doing well and is such a happy boy! He loves school and he is learning so much. He just received his report card and we had a teacher conference the other night and both went very well. The teacher says he is a wonderful student and is well liked by his classmates. He's made a good friend, Jason, who he rough houses with and the girls, as always, are drawn to Devon.
Darren is loving school also. Yesterday, he had his Thanksgiving day party at school and he was so excited to eat the pumpkin bread they made as a class. He is learning so much.. recognizes his letters and numbers, writes his name, and pretends to read like his big brother. He is really a joy.
Steve and I are doing very well and we're looking forward to celebrating Thanksgiving with both sets of families. It's especially exciting for us to be together this year since our plans to move down to South Carolina are still in the works. Steve has been down there a couple of times this month and is getting more familiar with the area. It's exciting for us to be planning for this new change in our lives.
I also have my 20th highschool reunion this Saturday (stop doing the math, I'm 38 years old!)I have a group of friends whom I still keep in touch with and we're all going together. I'm really looking forward to reconnecting with a bunch of people.
We have so much to be thankful for and Thanksgiving especially reminds me of that. We wish all of you a very happy and blessed Thanksgiving with you and your families.
Tuesday, October 4, 2005 8:42 PM CDT
I’m overdue on an update once again. All is well here and Devon is loving school! He catches the bus for an early 7:40 and goes on with a smile and I’m there waiting for him at the bus stop at 11:50 and he comes off with a smile. He seems to be really enjoying it and he is pretty talkative about what he did during the day and whom he played with. He is getting very excited to begin reading and tonight he pointed out a word in a book that he recognized! Each day, he has a different activity scheduled, art, gym, computer, library and music and he looks forward to each activity.
It is sometimes a little hectic in the morning trying to get him meds on an empty stomach (I’m supposed to wait 1 hour but the docs said 20 minutes should be fine) and then having him get ready, eat…you know how it goes. I let him wake up when he is ready so there are times when I am driving him to school. I feel he is too young to be woken up at 6:30 every morning for kindergarten. If he sleeps late, his body needs the rest and I am fine about driving him in.
Darren has also started preschool and goes 2 days a week. He also enjoys school although he does say he doesn’t want to go but is fine when I drop him off and always has a big smile when I come to pick him up. He is so talkative about school and will tell me what he had for snack, what he played with and any new projects. It’s great for me to get so much information!
I actually have 2 mornings a week for about 2 hours which is wonderful. I’ve started working out again and I feel so good. I love getting my energy level back and being able to take a shower is a plus too!
We are moving ahead with our plans to move down to South Carolina in June 2006. It felt good to sell a bunch of items at our tag sale last weekend and not have to think about moving them. I also look at our house differently and say, “I need to fix that up because I need to get it ready on the market for the Spring”. It’s amazing how many things that I’ve overlooked and I want to enjoy them myself, not fix it for someone I don’t even know. I’m having fun researching Greenville and the surrounding area and learning about our new home to be.
This weekend, we’re planning to be up in Cooperstown with Steve’s parents and his brother and his family. The guys will probably go to the Baseball Hall of Fame while I take the kids to the Catskill Game Farm with Evie. It will be so nice for all of us to get together and we’ll be spending one night away.
This past weekend, we were up in Syracuse with my parents visiting my brother and his family. We had such a nice time! We went apple picking on Saturday and the guys went to a NASCAR Imax theater in the afternoon. Devon loved it and was able to see Kurt Busch on the big screen! That night, my parents babysat all 4 kids so that we parents could go out for drinks and celebrate Jimmy’s birthday. We went into Syracuse and sat outside talking and catching up on things which was just perfect. On Sunday, we had the Buddy Walk for Rachel and it was so amazing. They had games, arts and crafts, a BBQ, an auction and of course a 2 mile walk to raise awareness for Down Syndrome. The kids had such a good time together and at one point, I saw Devon stroking Rachel’s hair and touching her cheek. It was beautiful.
Thank you for checking in on Devon’s progress. I’ll try to be better about the updates!
Wednesday, August 31, 2005 11:53 AM CDT
I have so much to update you on since my last entry. First of all, we are all doing fine and everyone is feeling well. Devon had his kindergarten orientation last night and he can't wait to start school! He was able to take a short ride on the school bus and he met his teacher and classmates. The classroom is so colorful and cheery and his teacher, Mrs. Scully, is "really nice" according to Devon. He starts tomorrow and he is ready with a new racing car backpack, a new outfit, and a new nametag. I'm so proud of him!
Devon has also started playing soccer and Steve is the assistant coach for his team. He had his first game over the weekend and he did really well. Devon loved it and he can't wait for his next practice and game. I was actually surprised at the amount of energy he had running around and kicking the ball. I really thought it might be too much for him but I guess his endurance is right back to normal. The exercise is so good for him and getting his muscles stronger and I'm so happy that he enjoys it.
Last weekend, we had all of Steve's family over for a family reunion celebration. Steve's brother, Jon, and his family came down from Buffalo, Steve's sister, Jody and Kajsa came down from Gloucester and his parents were all at our house. We had such a great time! We celebrated Hank's birthday and I think having the family together was the greatest gift. The five grandchildren, Jim (12), Karin(10), Kajsa (8), and our two boys really got along so well. We spent most of Sunday down at the lake swimming, eating and drinking. Devon and Darren loved tacking their big cousin Jim and Karin and Kajsa had fun being "girlie girls" saoking in the jacuzzi tub and using all of my bath products. It was so nice to get everyone together and we really enjoyed having everyone at our home.
Thank you to all who has already sponsored Steve on his PMC bikeride. He did a great job and we are so proud of him. We met Steve and his brother, Jon, at one of the waterstops and we got to spend some time chatting while they hydrated and rested up for the 100+ miles they still had to ride! Its such an emotional experience watching all these riders go by, each of them having their own personal story as far as why they ride and for whom. Steve has raised $4,000+ and if you would still like to sponsor him, he has until the middle of October to submit the money. We'll be having our annual tag sale in a few weeks where Devon has a lemonade stand and we donate all the proceeds from the tag sale to the Jimmy Fund. We can clean out our house and donate to a good cause at the same time!
Speaking of cleaning out our house, Steve's job with Timken is being relocated to South Carolina. It looks like by June 2006, we'll be moving to Greenville. It's exciting to think about, a new place to explore, a new house to decorate, and new people to meet...but, yet, we really enjoy where we are and our families are close by that this move is really bitter sweet. Steve and I have already been down there and were able to spend some time in the area and look at homes. I have to say, it really is pretty and the town of Greenville is just beautiful. I'm looking forward to introducing the kids to more of the arts and I'm ready for a bigger city with more of an international culture. We'll keep you posted on our plans.
One of the biggest issues about us moving was the hospital care and what was best for Devon. We had a tour of the children's hospital down there and we were very impressed with the facility and doctors we met. We spoke to Devon's oncologist at CCMC, Dr. Hagstrom, and he didn't seem very concerned about the move and how that might affect Devon. As long as they can draw blood and run labs on Devon, that should be fine at this point. We usually see Dr. Hagstrom 4x per year for blood draw and a checkup, his endocrinologist 1x per year, his nephrologist 2x per year, and the Jimmy Fund 1x per year (plus some other doctors for regular routines, eye doctor, echocardiogram, PFT, etc). I would probably come back three times next year to see Dr. Hagstrom, 2x the following year, and so on until we made the transition. I don't think I could fully make the transition without including Dr. Hagstrom but maybe seeing him once a year in 3-4 years time would work out. Devon has way too much history with Dr. H to totally keep him out of the picture.
Tuesday, August 30, 2005 7:14 AM CDT
I have so much to update you on since my last entry. First of all, we are all doing fine and everyone is feeling well. Devon had his kindergarten orientation last night and he can't wait to start school! He was able to take a short ride on the school bus and he met his teacher and classmates. The classroom is so colorful and cheery and his teacher, Mrs. Scully, is "really nice" according to Devon. He starts tomorrow and he is ready with a new racing car backpack, a new outfit, and a new nametag. I'm so proud of him!
Devon has also started playing soccer and Steve is the assistant coach for his team. He had his first game over the weekend and he did really well. Devon loved it and he can't wait for his next practice and game. I was actually surprised at the amount of energy he had running around and kicking the ball. I really thought it might be too much for him but I guess his endurance is right back to normal. The exercise is so good for him and getting his muscles stronger and I'm so happy that he enjoys it.
Last weekend, we had all of Steve's family over for a family reunion celebration. Steve's brother, Jon, and his family came down from Buffalo, Steve's sister, Jody and Kajsa came down from Gloucester and his parents were all at our house. We had such a great time! We celebrated Hank's birthday and I think having the family together was the greatest gift. The five grandchildren, Jim (12), Karin(10), Kajsa (8), and our two boys really got along so well. We spent most of Sunday down at the lake swimming, eating and drinking. Devon and Darren loved tacking their big cousin Jim and Karin and Kajsa had fun being "girlie girls" saoking in the jacuzzi tub and using all of my bath products. It was so nice to get everyone together and we really enjoyed having everyone at our home.
Thank you to all who has already sponsored Steve on his PMC bikeride. He did a great job and we are so proud of him. We met Steve and his brother, Jon, at one of the waterstops and we got to spend some time chatting while they hydrated and rested up for the 100+ miles they still had to ride! Its such an emotional experience watching all these riders go by, each of them having their own personal story as far as why they ride and for whom. Steve has raised $4,000+ and if you would still like to sponsor him, he has until the middle of October to submit the money. We'll be having our annual tag sale in a few weeks where Devon has a lemonade stand and we donate all the proceeds from the tag sale to the Jimmy Fund. We can clean out our house and donate to a good cause at the same time!
Speaking of cleaning out our house, Steve's job with Timken is being relocated to South Carolina. It looks like by June 2006, we'll be moving to Greenville. It's exciting to think about, a new place to explore, a new house to decorate, and new people to meet...but, yet, we really enjoy where we are and our families are close by that this move is really bitter sweet. Steve and I have already been down there and were able to spend some time in the area and look at homes. I have to say, it really is pretty and the town of Greenville is just beautiful. I'm looking forward to introducing the kids to more of the arts and I'm ready for a bigger city with more of an international culture. We'll keep you posted on our plans.
One of the biggest issues about us moving was the hospital care and what was best for Devon. We had a tour of the children's hospital down there and we were very impressed with the facility and doctors we met. We spoke to Devon's oncologist at CCMC, Dr. Hagstrom, and he didn't seem very concerned about the move and how that might affect Devon. As long as they can draw blood and run labs on Devon, that should be fine at this point. The company has offerred to fly us back 4 times per year for three years so that we could ease into the transition over time. We usually see Dr. Hagstrom 4x per year for blood draw and a checkup, his endocrinologist 1x per year, his nephrologist 2x per year, and the Jimmy Fund 1x per year (plus some other doctors for regular routines, eye doctor, echocardiogram, PFT, etc). I would probably come back three times next year to see Dr. Hagstrom, 2x the following year, and so on until we made the transition. I don't think I could fully make the transition without including Dr. Hagstrom but maybe seeing him once a year in 3-4 years time would work out. Devon has way too much history with Dr. H to totally keep him out of the picture.
Monday, August 8, 2005 11:50 AM CDT
We just got back from a wonderful vacation in Lake George with my parents and my brothers’ family. My parents rented a house near the lake with a fenced in yard and within walking distance to the center of town and to the lake. We had great weather and we spent a lot of time swimming down at the beach and just enjoying the time together at the house. The kids loved being with one another and Rachel always had a kiss or hug for the boys when they woke up. They all got along so well and it was so much fun to see them all playing together and really enjoying each other.
Everyday, they played this game called Hullaballoo where they had to listen to commands from a computer and step on the right pads. For example, the command might be that everyone has to step onto a triangle and then go to an animal. We enjoyed watching the winner do a funky dance or a bow. The kids got a kick out of having an audience each time they played! We took the kids to an amusement park, the Magic Forest, they really enjoyed. It is geared to young children so the kids were able to ride the rides alone and we had so much fun watching their smiles as they whirled around! The kids went on a roller coaster, a hokey safari ride (they loved it) and a big slide to name a few. Another day, we rented a pontoon boat and rode around the lake for a couple of hours. We brought a picnic lunch and moored it in the middle of the lake and the kids and dads went out for a swim. Devon and Darren tried their hand at fishing which ended abruptly when they caught a duckling by mistake. We were able to cut the line and the duckling swam off with his mom and other siblings so I think he was ok. I was freaking out and the kids thought it was pretty funny that they caught a duck. We took the boys to a GO-Cart racing track which was the highlight of Devon’s vacation. They had a mini track where he and Darren could ride in their own cars around a small track and they also had an adult track where Devon was the passenger while Steve drove. It was like being in a real race car with the safety harness and Devon thought that was really cool.
Devon stayed up late one night to watch the fireworks. It was his first time seeing a real show and he felt so proud because he was the only kid to be up with the adults. He liked the idea of being the “big” cousin and he would often offer to babysit or help out when some of the adults were not around. We each had some time to spend out since there were enough adults to watch the four kids. Steve and I had a night out where we went out for drinks and appetizers in town and just walked along the boardwalk. Steve did a lot of biking to get ready for the PMC this weekend. Pam, mom and myself went out shopping (and spending) at the outlet stores one afternoon. It was nice for all of us to get some time out.
On Saturday, we drove to Boston from Lake George to be at a surprise 90th birthday party for Steve’s aunt Ruthie. She was so surprised and so happy to see the boys. The boys sat down with her to eat birthday cake and she really enjoyed that. So many people commented on how well behaved the kids were and as a parent, that always makes you feel good.
We spent the nigh in Boston and went to the Jimmy Fund picnic on Sunday. Steve’s parents and our niece, Kajsa, also came with us. What a great time we had! The kids went on rides, slides, got their face painted, went for a police car ride, played with a parachute, etc.; There were so many activities planned besides a wonderful BBQ. Devon and Darren just love Kajsa and she is so helpful and good with them;. She helped Darren climb the stairs to this tall slide and she would hold their hands to go to the next activity. It was a great way to end a wonderful week’s vacation.
Thank you for checking in on Devon’s progress and keeping him in your thoughts and prayers.
Wednesday, July 6, 2005 10:19 AM CDT
I'm very happy to report that Devon is doing much better and (knock on wood) we haven't been back to the hospital since I last wrote in the middle of June. As a matter of fact, Devon has been enjoying the summer with swimming, friends and lots of running around! He had a wonderful 6 year old birthday with a NASCAR/Kurt Busch theme at the end of June!
Devon loves NASCAR and his favorite driver is number 97, Kurt Busch. We had 13 kids over on a very HOT day at the end of June for his birthday party. We set up a double slip and slide and a sprinkler system that Steve made out of PCP piping (It is really cool with water shooting out and the kids run through it like a car wash)and the kids had a great time cooling down in it. Devon made a Pin the Tail on the Racecar game and we also had a racecar piniata. The party was a huge success. We also had a Happy Hour party with our neighbors and then another birthday party with his cousin Rachel and the family on Sunday. The whole weekend was a birthday celebration and it was great!
We've been spending a lot of time down at the lake and its been so refreshing. I took the boys down yesterday for a short time to cool down. It's so nice that the lake is so close to us and that the boys enjoy the water so much. Devon received a blow up boat for his birthday and he and Darren love going for a ride in it. We had a lot of fun as a family and with our neighbors cooking out and swimming at the lake over the Fourth of July holiday. We also went up to Limerock and saw the qualifying race of LeMans. It was so much fun! We brought a picnic and the boys loved watching the racing and going down to the pits. We went with some of our neighbors and had a great time!
We are planning a mini vacation to Martha's Vineyard that we are all excited about. I think the boys will love the ferry ride and of course the beach. It would be great to get some bikeriding in too!
Speaking of bikeriding, Steve is in training for his fourth PMC ride. He'll be riding the first weekend in August over two days and ride 200+ miles on his bike. We have sent out many pledge letters trying to raise money for a cause that is near and dear to us. Steve is once again riding with the team "Friends for Life" who are passionate about raising funds for cancer research. Thank you for those who have already contributed. If you would like to sponsor Steve, please click on the link below.
Thank you for your continued thoughts and prayers.
Friday, June 17, 2005 12:24 AM CDT
Well, I'm here with Devon in the clinic and he's getting fluids through an IV. They sent his counts to the lab to confirm his dehydration and we should find out in a couple of hours. Dr. Hagstrom didn't even have to wait for the counts to come back to get him on fluids right away. Devon has been lethargic and he has been complaining about cramps which could mean electrolytes being off. We were in about 1 1/2 weeks ago for hydration because he was vomitting and had diarrhea and couldn't keep anything down for 4 days, not even water. I came in after 2 days of Devon not being able to keep anything down and at that time, he had lost 3 lbs. He is up a little from last week (thank goodness) but he is still so thin and weak.
After we were in last week, he seemed to be getting better. He was eating and drinking more and had more energy so I thought he was on the way up. We took it easy with activities in order to conserve his energy but by the end of the days, he was pretty tired. It's such a fine line to balance whether or not to call the doctor. He would wake up tired but once we got food into him, he got his energy level back. He was outside playing with the kids, bothering his brother, and not napping. The only problem was that he couldn't kick the diarrhea. I think it has just taken a toll on his little body and he needs to have outside hydration to get those electrolytes up.
I don't know what it is when he gets a stomach bug but it totally wipes him out. Not only does he get dehydrated very quickly but he loses weight so quickly and it takes so long for him to put it back on. I'm so glad I decided to get him in and have Dr. Hagstrom take a look at him. I have peace of mind going into the weekend.
Hopefully we'll be out of here by the end of the day so we can resume our normal life. We're planning to go up to Boston to visit Grammie and Papa tomorrow after Devon's last T-ball game. I hope all goes well for Devon's sake. He is such a little trooper sitting here with his IV pole, sprawled out on the little bed watching a little tv. He had his hospital food lunch and was so good when the IV needle went in (as usual). He is just amazing for all he has and still has to endure at his little 6 years of age. What an inspiration to me!
Please continue to keep Devon in your prayers. Thank you for checking up on him.
Wednesday, June 1, 2005 12:59 AM CDT
We are all doing well. I thought it was about time to update the website and since Darren is down napping and Devon is playing racecars in his room., this would be a good time.
Last weekend, we were invited to Paul Newman’s Camp Hole in the Wall. What a great time we had! We arrived on Friday evening and left Sunday after lunch and we were busy with all kinds of activities during that time. Devon really enjoyed sleeping in a bunk bed and by the end of the weekend, he could climb those stairs like a firefighter. The boys went fishing and caught a couple of fish, they played all sorts of games, and they even had ice cream sundaes in a tree house. On Sunday morning, they sang, “Doe a Deer” for the talent show. They were wonderful and the audience loved them because the two of them were grabbing the microphone from one another because they each wanted to be the star. I had tears running down my face because I was laughing so hard. Steve and I both had a chance to do the climbing wall and the zip line which was really a blast. The camp and the counselors are just wonderful and they really make it special for the whole family. It was a great bonding weekend for all of us.
This past weekend, we went to the Memorial day parade in Torrington which the boys loved and then we had a little family cookout. The weather was beautiful so we were all out in the yard and the boys had a great time playing with the neighborhood kids. We have some really special kids on our block and they are good role models for the younger ones. Steve has begun work on the new shed and Devon is eager to help with the tools. We have a friend’s backhoe in our garage and we also had a small cement mixer come which made our boys (and the neighborhood boys) all excited. Yesterday, Devon was out in back building a house and talking away. I think he’s going to be an engineer.
Devon will be six years old on the 27th and he is so excited for his birthday party. Yesterday, we went to the party store and he picked up a bunch of supplies for his Nascar/Kurt Busch theme. He just loves racing and on Friday, he’ll bring in cupcakes with checkered flags and the number 97 (for Kurt Busch) into his classroom since his last day of school is the 6th. He’s upstairs right now making invitations to hand out and he’s drawing race cars on each one. My mother’s day card even had racecars on it so I know that I rate!
Thank you for keeping up on Devon’s progress. He is doing well although I did get a call yesterday from his nephrologist (kidney doctor) and his urine is showing higher concentrations of protein which means that his kidneys aren’t filtering very well. I need to check his blood pressure for the next week, collect another urine sample and then the doctors will determine if his medicine (Captopril) which he already takes twice a day, needs to be increased. This is the medication that we’re hoping will keep his kidneys stable and delay a possible transplant until the future. We’ll keep our fingers crossed and we appreciate your thoughts and prayers for Devon.
Wednesday, May 11, 2005 8:26 PM CDT
I’m happy to report that all is going well in the Sundquist household. I had a wonderful Mother’s Day that started off with breakfast in bed followed by a little shopping with my mom and then ended with dinner here with my parents. We had a great time and the boys love a party. We celebrated Mother’s Day last weekend with Steve’s parents and the boys helped me make a Mother’s day cake and dinner for Grammie. Like I said, they love a party! They also had fun with Papa who is doing well after his knee replacement last month. They sat on the bed with him while he read stories or they watched NASCAR together. We always have a great visit with them!
Yesterday, Devon had an appointment at CCMC with his endocrinologist and it was a good appointment. There was some concern in the past about his growth velocity and the possibility of growth hormones after doing growth hormone testing. I checked up in Boston and their response to growth hormones was, “no way”. Though there is no hard evidence that giving growth hormones may stimulate the neuroblastoma tumors, the research done doesn’t appear to favor this approach. There just isn’t enough information out there to justify the risk and rewards. Hey, back when Devon was 18 months old and diagnosed, we were told that with all the radiation he was going to be getting, he would most likely be the smallest kid in his class. You know what, I’ll take a smaller child who has a chance of beating cancer. Devon is growing, and though he is low on the growth chart, his velocity seems to be on target for his growth curve which is a good sign. But, because he has been growing over the past 18 months since we have seen the endocrinologist, she said we can now come once a year. That’s always good news when they decrease the number of appointments they want to see him.
Devon continues to be a happy and loving little boy. He has lots of friends, enjoys playing T-ball and he really is a good kid. It’s so wonderful to see Devon and Darren playing together and enjoying each other’s company. I’ve noticed a closeness between the two of them just in the past couple of months. Darren is getting older and can play without wrecking racetracks, blocks, train setups, etc that Devon has worked on building. Devon is maturing and understanding that Darren doesn’t play the same way he does but realizes that he can be a teacher and role model to Darren. I came home from work today to see the two of them on the front porch with my parents playing racecars. Devon was holding each race car up and explaining to Darren the driver and a few other facts about the car. It was really touching and I took a moment to enjoy this interaction. I was so proud of both of them. I also count my blessings.
Thank you for checking into Devon’s web page and thank you for keeping him in your prayers.
Tuesday, April 19, 2005 9:06 PM CDT
It’s been a while since I last wrote so I thought I’d take a few minutes to update since we just had a regular appointment with Dr. Hagstrom at CCMC today. Devon is doing well. He’s gaining weight, he’s growing and his counts look good. We love these kinds of appointments! He had his blood drawn and a regular physical exam today and within one hour or so, we were back on the road to go home. Each time we leave the clinic, Devon always comes out with some new kind of toy and today was no exception. He had a whole bag full of goodies! The volunteers and staff at the clinic are just wonderful and they all just love Devon.
Devon is on school vacation this week so we’re trying to plan some fun activities. Tonight he has a special night sleeping over at Grandma and Grandpa’s house. He called before going to bed to say he was having a fun time and he went to see the daffodils in Litchfield and then went out to dinner. He left at 1:30 PM this afternoon (just after we got back from his appointment in Hartford) and he’ll be with them all day tomorrow because I work on Wednesday. He packed his stuffed animals (4 dogs), he brought his race cars (47 of them in their own suitcase), he brought his new Kurt Busch article (his favorite NASCAR driver) and many other things besides the boring necessities like clothes and a toothbrush.
Yesterday, my mom and I brought the boys to a farm and they loved seeing all the animals and they were able to see baby kittens just 1 week old. After the farm, we had a picnic and enjoyed the beautiful 70-degree weather! In the afternoon, we had a birthday party for a friend of theirs up the street and the boys played with the neighborhood kids until dinner.
Tax season is over and I finally went to the doctor because I was having a hard time getting rid of this cold. Well, now I’m on antibiotics because I have walking pneumonia. (Steve had it around Easter time) I feel so much better as of yesterday and I’m basically back to normal. Hopefully the boys won’t get it and as of now, they are both fine and full of energy.
Devon has started T-ball and is playing on the Red Sox this year! Darren is signed up for pre-school in the fall (2 days/week) and keeps me running all day. The only break I get with him is during his naptime or when he is engrossed in a TV program. Today, I was down and digging in the dirt playing pretend birthday party and trucks while Devon was with Grandma and Grandpa.
We have a play date coming up later in the week and we’re thinking about going up to Boston this weekend. Steve’s dad is having knee surgery tomorrow and depending on how he feels, we may go up and keep him company. We were supposed to go up this past weekend but after my diagnosis, we stayed back in CT. We have yet to celebrate Easter with them and the kids are looking forward to the annual Grammie and Papa Easter Egg Hunt!
Enjoy this wonderful spring sunshine and weather we are blessed with. Thank you for keeping tabs on Devon’s progress.
Sunday, March 13, 2005 7:30 PM CST
I just wanted to get a quick update in (it’s 6:50 AM and everyone is still sleeping) to let you all know that we are all doing well. We have been enjoying the snow and getting outside to play a bit on most days. Steve took a ½ day on his birthday and he took Devon skiing at Sundown. The two of them had a great time and Steve took Devon up on the chairlift for the first time! Devon thought that was pretty cool. He’s still working on his snowplowing and evidently he got a little frightened during one of his runs when he couldn’t stop and went straight down the hill! I think that was when he decided to take a break. My Dad also went to watch and Steve was able to get a few runs in too.
It’s tax season so I’m busy at work and at home at nights. I can get a bit done each night after the boys go to bed. It’s amazing how my days and nights just fill up with all kinds of activities, yet if I were to tell someone what I did, I rarely have much accomplished!
A couple of weeks ago, Steve’s parents and our niece, Kajsa, came and stayed with us for a few days. We had such a great time with them! They came to help out with babysitting since my parents were still down in Florida and Steve was on business for a few days. I think they went home exhausted after watching three kids for two full days! Kajsa is eight, so she is very helpful with the boys and they just adore her. She is a wonderful big cousin and I really enjoy spending time with her and doing “girlie” things like scrapbooking or running her a bubble bath and lighting my special candles. She appreciates it so much and said she felt like she was at a hotel.
This weekend, my brother and his family were down so the boys were able to spend some special time with their other cousins. Pam and I went out scrapbooking last night and the guys had the kids and ordered pizza. The cousins get along so well and its so heartwarming to see them hugging because they are happy to be with one another. We celebrated an early St. Patrick’s Day dinner at my Mom and Dad’s house since we were all together. We ate corned beef and cabbage while the kids chowed down their macaroni and cheese. Annie’s is Irish, isn’t it?
Devon is all signed up for Kindergarten and he’s looking forward to taking the school bus and being a “big” boy come September. I’m so proud of him!
Thank you for checking in and keeping our little guy in your prayers! Please check out our updated pictures from our Florida vacation.
Friday, February 18, 2005 2:19 PM CST
We had a fantastic time down in Florida! The boys just loved the beach and playing in the sand. We had beautiful weather and it was even warm enough (for us Northern people as they call us) to go swimming.
We spent a week with my parents in Naples and besides a couple of small side trips; we spent most of our time at the beach and playground. It was truly relaxing and I even got to the beach twice for an hour or so by myself. What a treat to just read a magazine or take a nap! Devon loved playing baseball on the beach and hitting the ball into the water and running the bases. The boys had fun jumping in the waves, making sandcastles and roads, and searching for shells. Devon brought his shells into school today to give out to his pre-school friends.
We went out together a couple of times to eat and one day we went to a local zoo, which we all enjoyed. The kids got to see lions, tigers, kangaroos and of course, alligators. Then we went another day to the Everglades and saw lots of alligators and birds. Steve and I went out two nights for dinner in town, which was really nice too.
We were within walking distance to the beach, the playground and the town (Fifth Avenue). It was so great! Steve and I would stop and grab a coffee and cappuccino in town and then bring the boys to the playground. In the afternoon, we would pack up a backpack and be at the beach in less than 10 minutes walking time. The location was just perfect. In the evening, we usually ate at the condo and the boys loved hearing stories from Grandpa about when he was a little boy. They’re still talking about them now!
It’s nice being back and even though we’re back in the cold weather, I know that spring is not far away. The boys are anxious to see the pictures and watch the videos from the vacation so we’ll make a movie night out of it and reminisce our nice time together.
Thanks for keeping up on Devon’s progress and keeping him in your prayers.
Wednesday, February 2, 2005 9:13 PM CST
We’ve had a few emotional days here but I’m happy to report that we are all doing well again. Steve is back home from China, Devon is back at school, and we are all getting over our coughs and colds just in time for Florida!
Let me tell you what’s been going on. Last week, Devon wasn’t feeling good for a few days; fever, lethargic, not eating, etc… so I brought him to CCMC to see Dr. Hagstrom because I was afraid of the whole dehydration thing again. As expected, he was dehydrated and we stayed the afternoon to get some fluids into him and he even began eating a little. He was also treated for an ear infection (his first one!) so he started on antibiotics too. No big deal. That was last Monday and we left the clinic feeling like Devon was on his way up. He had a few rocky days after that with very low energy and not eating much but by the end of the week, he started eating more and had more energy. On Saturday night, at 9 PM, we get a call from the nurse on call at CCMC, saying that one of Devon’s blood tests came back positive for some infection and he needed to start on antibiotics the next day. Steve and I were both shocked and nervous. Getting that call just brought back all kinds of emotions from the days of Devon’s treatment. You only get a call late at night when its something big (and usually bad). We were instructed to bring him back to CCMC on Monday to have his blood drawn, yet again, to make sure everything was ok.
Now, let me add, that I just learned a week or two prior to this, that the little boy diagnosed with neuroblastoma a few months before Devon and on the same exact protocol as Devon, just relapsed after 3 years and two months out of treatment. Devon is 3 years 5 months out of treatment. This little guy, Sean, complained of back pain because the tumor grew back and was pressing against his kidneys. Devon, was also complaining about back pain at this point and at times was crying from it. As you can imagine, Steve and I were just sick to our stomachs thinking about everything for two days before Devon’s appointment on Monday. After finding out about Sean’s relapse, it brings us back to our reality and it’s frightening. Steve and I do not dwell on negative thoughts and we’ve been so blessed these past 3 years since Devon’s treatment yet the possibility of relapse is very real with neuroblastoma. We felt so much better after talking to Dr. Hagstrom on Monday and watching him perform a physical exam on Devon. He didn’t notice anything unusual and thought Devon looked better than he did the week prior when we first brought him in. Dr. Hagstrom also believed that the blood sample was probably contaminated and that Devon probably didn’t have a blood infection since he didn’t have a fever and wasn’t showing signs of being sick. We don’t have the results from the 2nd blood test yet but the rest of his counts were fine. Steve and I felt so relieved after that appointment.
So, today is Wednesday, two days after our very emotional day at the clinic and I go into school to sign Devon up for Kindergarten in September and I have a meeting with the nurse. Do you know where this is going? So anyhow, I’m talking to the nurse and giving her a little background about Devon and his past, something I’ve been able to talk about numerous times, etc. and she asks me if he is on any medication. I go on to explain all the meds he is on and what they are for and she asks if he will need to take any medication while at school. I thought about it and said probably not, blah, blah, blah. She then said, ever so nicely I might add, that if he needs any meds while at school, he’ll need to come to the nurse’s office to take it. Well, I just stated crying. I don’t really know why, probably because I’m so emotionally drained from the difficult weekend and also because I just want Devon to experience as much “normalcy” as he can without singling him out that I just lost it. I can’t believe I didn’t keep it together for that meeting. I’m sure there is a note in Devon’s file making reference to his emotional mother. By the way, Devon wasn’t at the meeting so he never saw me break down. That’s one thing Steve and I have tried to do, to stay strong in front of Devon. Kids can read their parents and I never wanted Devon not to feel safe.
I have to say, the nurse was very nice, and it wasn’t anything she said or how she said it that made me break down. I think it was just timing and I was at a tough time. I almost laughed when she talked about some of the other kids coming in for meds and how the kids with peanut allergies sit at a different table at lunch time with their friends nearby. I almost felt like saying, my son doesn’t have #@%* peanut allergies! Not to say that isn’t serious because I know it is, but my perception on sickness is a little skewed from our past experience.
I’m feeling fine now and I’m really looking forward to our Florida trip and some nice weather. The boys are as wonderful and happy as can be and they really are my sunshine every day. Thanks for hearing me out and please continue to keep Devon in your prayers. I also ask that you keep Sean in your prayers as well. I’ll be seeing his Mom this weekend.
Wednesday, February 2, 2005 9:13 PM CST
We’ve had a few emotional days here but I’m happy to report that we are all doing well again. Steve is back home from China, Devon is back at school, and we are all getting over our coughs and colds just in time for Florida!
Let me tell you what’s been going on. Last week, Devon wasn’t feeling good for a few days; fever, lethargic, not eating, etc… so I brought him to CCMC to see Dr. Hagstrom because I was afraid of the whole dehydration thing again. As expected, he was dehydrated and we stayed the afternoon to get some fluids into him and he even began eating a little. He was also treated for an ear infection (his first one!) so he started on antibiotics too. No big deal. That was last Monday and we left the clinic feeling like Devon was on his way up. He had a few rocky days after that with very low energy and not eating much but by the end of the week, he started eating more and had more energy. On Saturday night, at 9 PM, we get a call from the nurse on call at CCMC, saying that one of Devon’s blood tests came back positive for some infection and he needed to start on antibiotics the next day. Steve and I were both shocked and nervous. Getting that call just brought back all kinds of emotions from the days of Devon’s treatment. You only get a call late at night when its something big (and usually bad). We were instructed to bring him back to CCMC on Monday to have his blood drawn, yet again, to make sure everything was ok.
Now, let me add, that I just learned a week or two prior to this, that the little boy diagnosed with neuroblastoma a few months before Devon and on the same exact protocol as Devon, just relapsed after 3 years and two months out of treatment. Devon is 3 years 5 months out of treatment. This little guy, Sean, complained of back pain because the tumor grew back and was pressing against his kidneys. Devon, was also complaining about back pain at this point and at times was crying from it. As you can imagine, Steve and I were just sick to our stomachs thinking about everything for two days before Devon’s appointment on Monday. After finding out about Sean’s relapse, it brings us back to our reality and it’s frightening. Steve and I do not dwell on negative thoughts and we’ve been so blessed these past 3 years since Devon’s treatment yet the possibility of relapse is very real with neuroblastoma. We felt so much better after talking to Dr. Hagstrom on Monday and watching him perform a physical exam on Devon. He didn’t notice anything unusual and thought Devon looked better than he did the week prior when we first brought him in. Dr. Hagstrom also believed that the blood sample was probably contaminated and that Devon probably didn’t have a blood infection since he didn’t have a fever and wasn’t showing signs of being sick. We don’t have the results from the 2nd blood test yet but the rest of his counts were fine. Steve and I felt so relieved after that appointment.
So, today is Wednesday, two days after our very emotional day at the clinic and I go into school to sign Devon up for Kindergarten in September and I have a meeting with the nurse. Do you know where this is going? So anyhow, I’m talking to the nurse and giving her a little background about Devon and his past, something I’ve been able to talk about numerous times, etc. and she asks me if he is on any medication. I go on to explain all the meds he is on and what they are for and she asks if he will need to take any medication while at school. I thought about it and said probably not, blah, blah, blah. She then said, ever so nicely I might add, that if he needs any meds while at school, he’ll need to come to the nurse’s office to take it. Well, I just stated crying. I don’t really know why, probably because I’m so emotionally drained from the difficult weekend and also because I just want Devon to experience as much “normalcy” as he can without singling him out that I just lost it. I can’t believe I didn’t keep it together for that meeting. I’m sure there is a note in Devon’s file making reference to his emotional mother. By the way, Devon wasn’t at the meeting so he never saw me break down. That’s one thing Steve and I have tried to do, to stay strong in front of Devon. Kids can read their parents and I never wanted Devon not to feel safe.
I have to say, the nurse was very nice, and it wasn’t anything she said or how she said it that made me break down. I think it was just timing and I was at a tough time. I almost laughed when she talked about some of the other kids coming in for meds and how the kids with peanut allergies sit at a different table at lunch time with their friends nearby. I almost felt like saying, my son doesn’t have #@%* peanut allergies! Not to say that isn’t serious because I know it is, but my perception on sickness is a little skewed from our past experience.
I’m feeling fine now and I’m really looking forward to our Florida trip and some nice weather. The boys are as wonderful and happy as can be and they really are my sunshine every day. Thanks for hearing me out and please continue to keep Devon in your prayers. I also ask that you keep Sean in your prayers as well. I’ll be seeing his Mom this weekend.
Wednesday, January 19, 2005 7:51 PM CST
We are so thrilled to have Steve come back home tonight! He’s been gone now for 10 days in China and the boys will be able to wake up to see Daddy! Almost every day, Devon says, “I miss Daddy”. I usually use that opportunity for Devon to leave a voice mail or make a picture for his Dad. Tonight, Devon left a few pictures that he drew over the week right next to Steve’s bed stand. Steve will be thrilled to see that when he arrives home!
We’re all doing well despite some minor colds, which is natural for this time of year. Devon is just getting over it and I basically had him rest for the past four days so that he could conserve his energy in fighting off the germs. He missed his 3rd ski lesson on Tuesday but it was 15 degrees and I didn’t think it would do him well to be outside in that weather. His last lesson is next week and maybe he’ll be able to go on the chairlift and down a hill!
Darren has now caught the cold and tonight, he’s in bed early sleeping with propped pillows and a humidifier. We basically moved everything from Devon’s room to Darren’s room. Hopefully, he’ll get a good night’s rest and feel better in the morning. I’ve been doing my best to stay healthy because we all know that if Mom gets sick, it’s tough on everyone, especially since I’ve been by myself. I have to say that I’m fortunate to have my parents close by and they have been able to help me out.
Devon was feeling much better today and went to school and then to a birthday party at McDonalds. I was at work so he went with his friend, Sam, and his mother. It sounds like he had a good time. It’s about 4:45 PM when I get home and it’s funny how little he remembers about the day when I ask him questions. Devon is not a big fan of McDonalds and so getting a Happy Meal is not especially a treat for him. He’ll have a few bites, eat a few fries and drink his milk. He’d much rather have a piece of salami and some Parmesan cheese!
We’re so excited because we’ve made plans to go to Florida next month and visit my parents while they are down there. They rent a condo for the month of February down in Naples so we’ll be staying with them. I’ve never been down there but it sounds beautiful with the beaches, searching for shells, and of course, the warm weather. The only thing I’m not looking forward to is putting on a bathing suit. Yuck!
Thank you for your continued kind words and prayers. We are so blessed and thankful for so much.
Tuesday, January 4, 2005 8:12 PM CST
Happy New Year! We are all doing well and I apologize for this long gap in updating Devon’s website.
Our holidays were absolutely fabulous! We celebrated 5 days of Christmas with parties, dinners and get togethers with both sides of the family. It worked out so well to get together with our families in small groups and the boys loved getting presents at each celebration. We were able to see everyone from our immediate families, which made our holidays extra special.
Some of the highlights from the past month included our Christmas morning of course when the boys went downstairs to see if Santa had come. The look of excitement as they saw the presents under the tree was precious. Devon was also so excited to see that Santa had eaten the cookies he left out!
One night, before Christmas, I was reading a story to Devon about Santa waiting for all the children to fall asleep before he delivered the presents. Devon’s comment was, “Santa is nocturnal.” Now, who would have thought that!
We went to a couple of Christmas parties especially put on for cancer care patients. We had a family night of ice-skating at the indoor rink in Simsbury where Santa came and gave out presents and then another one at the Space Museum where Santa and Mrs. Claus came in a fire truck! The boys loved seeing Santa and Darren especially loved talking about Rudolph and his red nose.
We also took a “Polar Express” ride on the Essex steam train and listened to a storyteller read the wonderful classic and also got a visit from Santa Claus. Santa gave each child a bell from the reindeer’s harness (just like in the book) and we drank hot chocolate and ate cookies while singing Christmas carols. It was a wonderful time for all of us.
The last highlight I can think of was listening to the boys’ sing Christmas carols on their own while playing. One of them would start singing and the other would join in and then the two of them would sing at the top of their lungs as if they were in a concert. They would make me smile with the words and phrases they inserted for the verses they didn’t know. For example, “Frosty the Snowman, with a pop pop pop and a button nose…”. I loved listening to them.
Today, Devon had his first ski lesson and he loved it! How nice for it to be in the 40-50 degree range in January! He did so well and I was so proud of him. I pulled Darren around in the sled while Devon had his class and Darren ended up falling asleep in it! He looked so cute!
Thank you for keeping up on Devon’s progress and thinking of him. We wish you and your families a very healthy and happy new year! Take a look at the updated pictures too!
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