Friday -- June 29th
Went to clinic yesterday for Maddie's check up and chemo push. Saw Kelley and her Mom there. That always helps pass the time.
Met with Dr.Simone and Dr.Grier. They both examined Maddie's leg and don't seem overly concerned with the pain and discomfort she has been having. We have been scheduled to meet with an orthopedics specialist while Maddie is in for her next round. We are thinking about a little support lift in Maddie's right shoe, to help balance out her hip/leg, and hopefully lessen her discomfort.
We are coming up to her last scheduled round. There are so many mixed feelings that come with this, all of which I'm told, are normal. After her round, she will have more scans to determine the game plan going forward, regarding her radiation and anything else. She will also continue to receive chemo, 2 days a week at home and one day at clinic, for another 3 weeks after her last round.
Anyway, we are so behind with pictures, and we have some real good ones, so I promise to get those onto the website within the next few days...right Ernie?
Enjoy the weekend - thank Goodness it cooled down! I'm off to CT. with Michael and Maddie tomorrow, for the night. We are going to my brother's house, for his son's high school graduation party. Ernie will stay home and have LOTS of fun with William and Thomas!
Wednesday -- June 27th
Kids had a blast swimming in the neighbor's pool yesterday.
William had his 5 year physical and did a great job! He informed Janet, our nurse, that he had already been through the same eye exams at his school screening, and he was now quite the pro.
He also told Dr. Fox a whole story about the time when "everyone left him home alone and went down across the street, because Ernie was afraid there was going to be an oil fire in the house." What?!?!?!
Dr. Fox said something like, "I wouldn't leave him alone in the house if I were you." Oh my Gosh! I felt guilty even though I knew I was innocent! Kids speak with such conviction! I felt like I had to assure Dr. Fox that it was a make believe story, but still almost wondered whose story he was buying, until William's next story...He "hit his head on the diving board fell into the pool." I added to his story, "Yeh, then Hope jumped in and saved you right?" When William smiled and nodded "Yup," I knew Dr. Fox was at ease now. Man, the things they say. You hold your breath whenever they start off with, "Mom, remember the time when..."
It'll be another hot one today - stay cool!
Tuesday -- June 26th
The weekend was pretty quiet. We got a lot of much needed work done around the house and yard. Ernie was able to take the kids out fishing a few times and enjoy the beautiful weather.
The kids were invited next door to enjoy a quick, awesome, firework display on Sat. night. They loved it!
Maddie's nurse, Nikki, came on Saturday to do Maddie's chemo, and, as always, brought her "prize box" with her. The boys go running to the door every time Nikki comes. Not only does she bring the prize box, but she brings them each a ring pop every visit. She's so good, she even knows the flavors each one likes! Hope even got a dog cookie from Nikki! Nikki - you're the best!
Sunday was a special day. I took Maddie, William, and Thomas to Meghan Duffy's bike ride fund raiser. The weather was perfect and the whole event was amazing. Some of the nurses from the hospital were there and so was Dr. Amy Sabota, one of the Oncologists. I have pictures, so I'll post them tonight. The kids had a blast.
We were late getting home, so we missed William's TBall award ceremony. Ernie was able to run over to the field to receive William's trophy for him. It's a cool trophy and sits proudly on William's shelf now.
Yesterday was the MFS PMC Luncheon. I drove Maddie into town to be there for this special luncheon. She and Ernie had a great time. Maddie was presented with a large white teddy bear wearing a team shirt signed by all the riders. Thank you MFS and PMC team. We truly are honored and grateful that Maddie will be your Pedal Partner this year. We look forward to seeing you out on the road.
After the luncheon, Ernie took Maddie over to the clinic. Nikki had been to the house early in the morning, before the luncheon, and Maddie's port jammed again. So, Maddie had to go to clinic to have it cleared out so she could receive her chemo. All's well now.
Last night we went over to the neighbor's for a quick swim. The kids had a great time. William insisited on wearing his donut suit so he could jump off the diving board. The suit is SO small on him, looks painful...you have to see it...
OK, that's it for now. Physical therapy scheduled for today, William has his 5 year physical with Dr. Fox, and then maybe we'll go swimming later. It's going to be a hot one. Stay cool!
Thursday -- June 21st
I know it's been a few days. Sorry about that...
We had an overnight visit on Monday from Mike and Priscilla and then Mary/Mimi stayed with us Tuesday through Thursday. It was great to see all of them.
Priscilla brought a basket full of homemade donuts, but threatened to bring the lard next time and bake here!
Ernie and his Mom got a lot of work done in the yard. They planted beautiful flowers and really brought the dull yard to life. Didn't think we'd get around to flowers this year, so thank you Mary!
Maddie had been real tired for the first few days of the week, so we went to the clinic yesterday for a blood transfusion. It made her feel a little better and her numbers are continuing to rise. Since one of the chemo drugs had been eliminated last round, her body was able to stay a little stronger and bounce back much quicker. She didn't fever this round!!! First time in a LONG time! Yeah!!!
Meg Duffy was in with her Mom and Dad, so it was great seeing them. We'll see them this Sunday for Meg's Bike Ride fund raiser. We're looking forward to it.
Maddie was sad she didn't get to go to school for the last day and say goodbye to everyone, so if any of you are reading this, Maddie loved seeing you all when she could throughout the year, thank you all for being so kind and caring, and have a wonderful summer!
Maddie was promoted to the 4th grade but will have to get tutoring over the summer to get caught up, so she can be well prepared. She is so happy she'll be continuing on with her class.
Michael finished out a great year in 4th grade. He had a great year with his teacher, Mrs. Longobardi, and friends. It was a good class. He's looking forward to 5th grade.
Maddie's new physical therapist came by this week and met with Maddie. Her name is Cynthia, and she's very nice. She'll be coming maybe two days a week, to help strengthen Maddie's leg and hip.
Today is the first day of Summer! Can you believe it?! Time to get into some kind of routine with the kids...
Friday -- June 15th
Just wanted to add a little "Mom" touch to Ernie's last entry. It's been a few days, so I have lots to say...
Yes, the PMC was a HUGE success and thank you SO much to the coordinators and all the volunteers who ran the show! Alison and Dave, you're the best! I was SO proud of Michael for all of his fund raising efforts. Thank you to all who contributed to his cause. Just to put things into perspective...most adults raise around $3,000. With all of your help, Michael more than doubled that!
It was so wonderful hearing a special announcement made for him and to watch him receive the PMC biking shorts and shirt. He was so proud but so humble. He didn't even want to come forward to receive his award until I pointed him out. Moms are supposed to do that right?
It was nice that my Mom and sister could be present to watch the special event. I watched my Mom get choked up and it really brought it all home again. Wow...we were riding for my child this time...it's so surreal.
It was so great that Michael Sweatman and Maddie got to start the race on the microphone. These two kids are amazing.
William and Thomas were both determined to ride in the ride too. William got right to the front of the pack and off he went! He thought it was a race and told me not to talk to him because he "had to go and win the race!" He rode the whole ride! Tongue waggin', sweat drippin'! It was so cute!
Thomas took off on his bike with training wheels. Unfortunately, 3/4 into the ride, his shoe broke and so did his training wheel! Man, what a bummer! I carried him back and dragged the bike! Awesome effort on his part!
All in all, it was a GREAT day. Thank you again to all!
Maddie and I checked into the hospital on Monday. Maddie did pretty well with the chemo. A little nausea but she got through it. While we were there, we met some very wonderful people.
An artist, named Tommy Hollenstein, was there doing demos of his artwork. Tommy was in a biking accident at age 24, that left him a quadriplegic. He now makes beautiful art using paints and the wheels of his wheel chair. He was such a nice guy and Maddie gave him a Maddie bracelet and drew him a picture of his dog Hiley. It was great to meet him. A lot of his artwork hangs in the lobby of Children's.
Another wonderful person we met was Nancy Serafini. She is the founder of the art program at Children's. She started the program 10 years ago and the day we met her was a big celebration of her dream come true. It was very touching and the art work throughout the hospital truly does lift the spirits of the kids and makes the environment so much more inviting, warm, and fun for everyone! What a wonderful gift to give to so many. Thank you to Nancy and her husband for all they have done and continue to do. It was an honor and a pleasure to meet you! Maddie gave Nancy a bracelet and a hug. Nancy gave Maddie a beautiful plant in a pink pot. It's so pretty. Please keep in touch.
Maddie met with a physical therapist when we were in. We are plannig to get physical therapy for Maddie's leg at home and we plan to start asap.
Maddie went to school yesterday but left early. She just wanted to see her friends. She is tired and not feeling so great, as her numbers are coming down now. It was an emotional day for several reasons...
Maddie was upset about coming home and just wept about how unfair this whole thing has been. Your heart just breaks because you know she's right, but you have to help keep her spirits up, even though you want to cry right along with her. She felt lousy at dinner time too, the boys were running around and she said, "I just want to feel good like them!" It's so hard, but through it all, she has remained so incredibly strong and she has the right to be angry and sad...
William had his kindergarten screening yesterday, so I took him to the school. He was in with Maddie's kindergarten teacher, so I went in to say hello to her for Maddie, and just started crying. I didn't mean for it to happen, but a wave of emotion just hit me. Maddie loved Mrs.Odoardi and the feeling was mutuaI. I remembered Maddie's big smile and her running around that school. You just want to turn back time. We hugged and I had to walk out. Mrs. Odoardi later found me and handed me a special note to give to Maddie.
Ok, well I've talked enough. I'm sure you all have things to do! We hope and pray for a restful weekend at home. Good luck this weekend to Sarah and the rest of Maddie's Fighters at this weekend's Relay for Life. They are in the top 10 fundraising teams and just $70 shy of reaching their overall goal. If Maddie is feeling well enough, we hope we can be a part of this special event!
Monday -- June 11th
Yesterday was the Norfolk kids PMC. We still don't have a final count on the funds Michael raised, but it was somewhere in the neighborhood of $7,500. As usual, the event went off without a hitch. Thanks so much to all the volunteers and especially Sharon Midura and Alison Lutes. You guys really made it special for us. We especially want to thank everyone who supported Michael's fundraising efforts. He was so proud of himself, especially when they took a moment before the ride to present him with an offical PMC Heavy Hitters riding jersey and outfit. Maddie and Michael Sweetman were the Pedal Partner representatives and officially started the ride off. It was wild watching hundreds of kids of all ages crusing down the street on everything from tricycles to racing bikes. We'll have pictures up on the web in the next day or so.
Maddie is starting her 2nd to last round of chemo today. We are all relieved to be moving ahead with it. Last week they told us Maddie will need more radiation treatments after she finishes up with her next and final round of chemo. (Won't they be surprised to see their favorite early morning patient again.) Most likely it will be to her lungs, spine and legs. We knew this was a possibility but it was disappointing to hear we won't be finishing up as early as we thought. Fortunately it won't be as extensive as the earlier treatments. We'll know more after we talk with Dr. Marcus, who is the Chief of Radiology.
Saturday -- June 9th
Maddie was supposed to start her 2nd to last chemo round Thursday. Unfortunately her liver counts were up and they decided to postpone her round of treatment until they could run some tests. We expect she'll move ahead with her treatment on Monday.
The kids PMC is tomorrow. So far Michael has raised over $7,000. We haven't checked yet, but we're pretty sure no child has reached that goal before. We're excited to see the final numbers. Speaking of fundraising, Maddie's Fighters have almost reached their goal in the Relay for Life, which is June 15th. And finally, one of the local television stations was raising funds for Children's Hospital. Check out this clip (it takes about a minute to load)...
Wednesday -- June 6th
Sorry it has been a while since we posted. We have been so busy...
So, let's see. I'll go back to last Saturday. What a special day that was...
Since Maddie didn't clear for her chemo round, she was able to go on the trip to the American Girl Doll Store in New York City, sponsored by Dana Farber.
Before I get into the highlights of the trip, I need to thank Lisa and Martha, both from Dana Farber, for doing such an amazing job for the girls. They give so much time, caring, and genuine love to all of the children and their families. It takes special people to do their jobs, they are Angels on Earth, and they are truly special to all of us!
The group boarded Amtrak in Boston, but Maddie and I, along with Meg and her Mom, Colleen, caught the train in Providence. We hopped on board and joined the others in the train car. There was a group of 40. All the girls were sitting in their seats with big smiles on their faces. Lots of our friends were there. Maddie and Meg plopped down near Caroline and I found my seat with the Moms.
It was a long train ride to the city (10:20-1:50) but when we got there, we all hopped into cabs and headed straight over to the doll store. Now Maddie was never into dolls, and was really going just so she could be with her friends, but once we got there, she really got into it. She picked her doll and had a good time finding outfits.
We had a beautiful luncheon, with little tea cups and goodies, in the tea room , which was so creatively decorated. You felt like Alice in Wonderland there.
Our daughters truly were a site to behold. Most of them bald, some with fuzz, some bloated from steroids. All of them beautiful and excited, full of pride and courage, as they walked through a doll store full of little girls with curls and ribbons in their hair. Our girls were the prettiest!
By the end of the afternoon, the girls were all getting tired. It had been a long day for them. We all hopped into cabs again and went back to the train station to wait for our train ride home.
Coming home, the train was full, so we all had to spread out a little more than we had hoped, but we were all still in the same car. Unfortunately, it was a SMELLY car. Yep, 3 1/2 hours of rancid body odor coming from one single man, who slept through the whole thing. Had he no idea of the wave of nauseau he was sending through the car?! It was bad...REAL bad. Can't and won't even try to describe it! You had to be there. It became the topic of discussion and even laughter for much of the ride home. We did our best to freshen the atmosphere by rolling Colleen Duffy's "Happy" perfume ball all over our bodies. Maddie even rolled it over her shiny little head! Every time I smell that perfume, I'll always be reminded of our train ride home from New York!
One highlight of the trip for me was in Penn Station, walking to our train at the end of the day. A homeless woman caught the corner of my eye, as our group stood near by her. I saw her shutter and put her head down. When she looked up, she had tears in her eyes and I smiled at her. She said, "Amen. These children are the most beautiful people on Earth." I said, "Yes, they are." Then she continued, "I look in their eyes and see such beauty and bravery and I just had to stop and say a prayer." I thanked her and we chatted for another minute. She was so incredibly touched by our group of girls. She was pretty too, and I wish I had more time to learn about her and her story. She really touched me. In fact, I wished I had given her a Maddie bracelet, but in passing quickly thought, "Oh she won't have access to a computer." But now, I realize, it would've been a beautiful piece of jewelery to her and I truly wish I had thought that at the time...
It's just so interesting to see how people are affected by these children. Everyone in a different way. What I found so moving, was that this homeless woman was not the only homeless person who was affected. I heard two other homeless people mutter, "God bless these kids." as we walked by. There seemed to be such empathy coming from others who had suffered. There was a spiritual connection, if you will, between these homeless strangers and our girls. I caught it, felt it, and was thankful for it.
Maddie will be admitted tomorrow for her next round of chemo. She has been tired this week and her leg/hip is really bothering her. We will be talking with a physical therapist this week to see what can be done to relieve some of the pain going forward.
The rain has stopped, hope you all enjoy the sunshine and have a great weekend. Hope to see you at Sunday's PMC Ride!
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