Sunday -- February 25th
We had a nice weekend. After tutoring on Friday Maddie went with her friend Haley to see a movie and then they went out to dinner at Friendly's. They had a lots of fun. Saturday Dad took Thomas and William for an overnight trip to the Franklin Marriott. They had a blast in the pool and met lots of other kids doing the same thing. At home, Michael and Maddie took Mom to her favorite restaurant (the Longhorn, for those that don't know) and then everyone came home and watched movies. It was a great way to finish up school vacation week.
As we've mentioned before, Michael is trying to raise funds for Dana Farber. He's riding in the kids PMC. Michael put together a fund raising letter and I've posted it below. The kids PMC web site isn't active yet to accept donations, so we've set up a mailbox for those folks that are interested in supporting him. Once we know what the link is we'll send it along.
I'm Michael Savoie and this is my second year riding in the PMC (or Pan Mass Challenge) for kids. Last year, I raised over $150.00! This year I hope to raise…
I understand what these kids with cancer are going through because in August 2006, my sister Maddie was diagnosed with a bone cancer called Ewing Sarcoma. These times have been hard and to help kids in the future, I need to raise as much money as I can.
If you don't know what the PMC is, it is a 192 mile bike ride from the western side of Massachusetts to the eastern most edge on the Cape. But for kids, we can choose a 1 or 2 mile bike ride.
If you want to help me with this cause please email me at firstname.lastname@example.org and I will send you the link to support me once it becomes available on the PMC web site.
Thursday -- February 22nd
Update: Looks like we're going to have to hold off for another week. Maddie's platelet counts are too low for admission. This starts to happen as you get further into chemotherapy. It's harder to come back, though you wouldn't know it from looking at Maddie. For now we'll get some tutoring in today and tomorrow and Maddie can go to school the first half of next week. It will be great to have her home when she is feeling good.
Sorry we haven't posted in a while. With school vacation life has been hectic. Maddie is being admitted today for her next round of chemo. This is the shorter cycle (3 days), but the more physically difficult one, so Maddie is very anxious. She is excited though about her piano lesson with Laurie at clinic today (every Thursday)!
She enjoyed her week at home, not having to get up for radiation and not having to go back in for more platelets. She was able to get a few days of tutoring in with Mrs. Taylor and saw a few friends. She and Michael had a sleep over in her room last night, enjoying some giggles before today.
We hope Maddie will be out on Saturday, and we are hoping that she might get to see some of her buddies this round. We think Meg might be in. We'll see. Have a good day and we'll keep you all posted.
Saturday -- February 16th
We had a great Friday night! The Freeman Centennial School, where Michael and Maddie attend school, held a fund raising line dancing event for Maddie. It was fantastic! All of the kids there looked like they were having a blast. Maddie was so happy that she could be there and even better, not have to wear a mask! Maddie's nurse, Pam ("Cookie") was there, which made it that much more special for Maddie. Maddie and Michael loved pulling the winning tickets from the raffle box. There were so many awesome gifts that were donated for this event, and every winner was so excited. I loved working the pizza table and getting to see all of the kids. We have known so many of them since pre-school and they are all getting so big and grown up. THANK YOU SO MUCH to Mrs. Godfrey, Mrs. Kiewlicz, Mrs. McGrory, the Student Council, students, families, and everyone who participated in, donated for, and attended the dance. Our family continues to be so incredibly grateful and appreciative for all of the support we have been given. We can't thank you enough.
A special thank you to Miss Dragani and her second grade class in Walpole, for making the beautiful Valentine's Day cards for Maddie. She loved them. That was so thoughtful of you!
We have a nurse coming out to the house this morning to administer Maddie's chemo and draw her blood. We will wait a few hours for the results. We were told to be prepared to possibly have to go in today for more platelets if her count is not up high enough. We are keeping our fingers crossed that we can stay home and enjoy the weekend.
A very exciting, thrilling, side note...Thomas is officially in big boy undies! Woke himself up last night to go "potty!" Yeehaw!
We wish everyone a fun, relaxing weekend.
Thursday -- February 15th
Maddie came home from the hospital yesterday late afternoon, Valentine's Day. All of the nurses on our floor and down in radiation, gave Maddie a lot of candy and cards, so she has enough candy to last for weeks!
No bacteria ever grew in Maddie's blood samples, so it was just one of those unexplained fevers. She needed a few blood transfusions and platelets during her stay, but as soon as her counts started to come back up, we could go home. Maddie came home on extra IV fluids to be given during the night, every night for the next week, before her next round. Her bladder is inflamed from the chemo and we have to keep flushing it as much as possible.
We had a couple of fun visits from Mom's friend, Beth, during our stay, which helped pass the time. Maddie beat Beth at Uno several times. Beth swears to brush up on her game and come back with a vengeance.
As we were checking out of our room, our friend, Val, was checking in. She is there for her LAST round of chemo! Go Val! We promised her we'd come back the next day to visit, as we'd be in for radiation and clinic anyway, so...
Today we went to Maddie's LAST RADIATION treatment!!! It was such a great day. We brought in a cake, bright, cheery flowers, thank you cards, and gifts. Maddie bonded with everyone on the radiation team, and truly was sad that she won't be seeing them every day. Of course, she's thrilled radiation is done, but she will miss her friends. We promised she'd come visit.
After radiation we headed to clinic. Maddie needed platelets again. They want to kleep hers up extra high, to help with the bleeding of her bladder, as mentioned earlier. She may need to go back in again on Sat. for more platelets, but we're hoping she won't. We'll know after the home nurse draws her blood on Sat.
Clinic was extra special today. Caroline was in getting hydrated for admittance and Meg was there too! The three girls pulled up a table and all played Uno together. They had a blast! It was so great to see them all looking and feeling so well, sharing their smiles and cute stories! We Moms shared some funny stories ourselves!
After clinic, we walked over to the hospital to visit Val and her Mom. We gave them each a gift, hugs, and the best wishes ever! We will miss seeing them, but we couldn't be happier for them! We will see them from time to time and plan a big cook out in the summer for a great reunion with all of our friends! We are so thankful to you both, Val and Liz, for being such wonderful, supportive friends to us. Val, you were there on the day Maddie was diagnosed. You were a wonderful inspiration for us, we are so grateful, and we love you!
A special thank you to the Ben, his teacher Mrs. Tolland and everyone at the Boyden Elementry School for the beautiful Valentine's Day cards you made for Maddie and her brothers. That was so thoughtful and they loved them!
It will be great to see Maddie sleeping in her bed past 5am tomorrow morning, not having to get up to go to radiation!
Enjoy the pictures from the past few days...
Tuesday -- February 13th
Still no word back on what is causing Maddie's fever. This is actually good news. If the cultures continue to come back negative and she doesn't have a fever, Maddie can come home once her white cell counts go back up. With any luck that will be on Wednesday. We hope to be home by Friday because the student council at Michael and Maddie's school is having a Line Dancing Night to benefit Maddie. It would be great if she was feeling good enough to drop by and say hello to everyone.
Caroline left yesterday afternoon. After that we had the room to ourselves and moved over to the luxurious B side. The B side has a window seat you can stretch out and sleep on. It's also a little bit roomier than the A side. In the evening the boys came in for dinner and dropped Mom off. She'll be staying with Maddie until they get home.
Sunday -- February 11th
Maddie ended up in the hospital again last night. She has a pretty good fever going. We're not sure what the cause is yet and are awaiting test results to come back. Maddie is very nervous it will have something to do with an infection in her port. The last few times her port has been the source of her infections and if it is again the source they may have to replace it Hopefully that isn't the case. On the plus side we ended up rooming with Caroline. It's always good to be with friends. In Dad's haste he took both sets of car keys with him to the hospital. He also got pulled over by the Brookline police. Mom will be visiting this afternoon after she finds suitable transportation.
This from Kristen:
Sorry we haven't written in a while. The days have just been so busy.
Maddie was so anxious to have a playdate when she got home, before her counts dropped, so Molly came over Wed. after school and ended up sleeping over. They just didn't want their time together to end. Maddie had to get up first thing in the morning so that we could get to the hospital by 8am on Thursday, to begin another full day of tests. We spent the day running between the hospital and Dana Farber for different things, and ended the day at the clinic for a blood tranfusion. We got home around 7:30pm.
Friday was a pretty quiet day at home. Maddie was tired. Saturday Michael went to his basketball game with Dad and the rest of us just hung out, not doing much really. Maddie stopped by her friend's house to introduce her to Hope, and to drop off a birthday gift. She wasn't going to be able to attend the party because of her low counts. She was sad about that, but at the same time understands the risks to her. She was so nervous about fevering and having to go back to the hospital.
So, Ernie and I went next door for a night out last night with friends, and the phone rang not long after we got there. Maddie had a fever. It's early in the week for her to fever, but it happened. Maddie looked so sweet and so sad as she walked to the car. She was wearing the big furry leopard hat I just bought her yesterday, and was holding her stuffed animal. When she turned back to look at me, it broke my heart...
Ernie got her to the hospital around 1am and her fever was at 102 degrees, which is high for someone in her condition. They didn't get to a bed until 4am. Maddie was so upset to have to go back in again, but the good news is that she was put in a room with her friend Caroline. Caroline is going home today but they were excited to share a room for a little while. They hadn't roomed together before.
So, here we are, Sunday afternoon. My sister, Jeanne, is bringing the boys and I into the hospital to visit Maddie and Ernie for lunch, and to pick up the car. We have to figure out what we're doing about the rest of the week. It looks like Maddie will be in for a few days. We're waiting for the results of her blood culture to find out the culprit this time.
Wednesday -- February 7th
Maddie got home around 11pm last night. Michael and I drove in to pick her and Ernie up. Michael couldn't wait to see her. It was so sweet to see him pushing her wheel chair for her as they left the building.
It was a very long emotional stay for Maddie but, physically, she did pretty well tolerating the chemo. She is just so happy to be at home. Of course, she had to get up at 5am this morning to go back in for radiation! Tomorrow is another full day at the hospital and clinic for more tests and possibly a blood transfusion. We have to get there by 8am.
A couple of things I want to touch on...
First of all, yes, I did get busted with the whole food tossing thing! I was mortified! I tried desperately to cut Maddie off with my facial expressions behind the curtain, but she just kept on going...Of course, Ernie thought that was hysterical when Maddie told him about it, and had to post it. You had to be there...
The syringe art that Maddie and I did had a very special meaning to it, aside from the sheer fun of it all. A young boy, named Caleb Jacobbe, passed away in May 06, after battling cancer. He was to turn 9 years old on Feb.4th. His parents have to decided to come back to the hospital every year around Caleb's birthday to host this fun activity in his memory. He loved to do syringe art. We never had the pleasure of meeting Caleb, as Maddie was diagnosed in Aug., however, we do know that he and his Dad set the Pac Man record in the playroom, and their picture hangs proudly next to the game, their score unbeaten. Their faces beamed with pride. What a special boy, what a special family. Our syringe art will always represent more than just a good time...
Aunt Denise left this morning to go back to California. We had a great week with her. She was able to attend Michael's band show (he plays the trumpet), hang out with the boys, and enjoy the insane chill of the Northeast! We loved snacking on our chips every night on the couch (a bad habit we got Denise hooked on) and Hope truly fell in love with her. She couldn't get close enough and had to sit on her feet or her lap at all times. Thank you for everything Denise! We'll miss you!
We are so thrilled Maddie will be able to ride her bike and swim again (no diving board!) and despite what Ernie said, she has not been riding all along. She actually has only gotten to ride her bike, literally, for 5 minutes since her diagnosis, when I let her sneak in a quickie at the end of the summer. She is so excited to be able to ride again! That was such a big deal for her...
OK, lastly, I would like to say that I continue to work with Ernie on his spelling, particularly, the words "naseaus and vertabre." Think he would at least have those down by now...So, despite what Paul Altmeyer says, the entries that contain mispelled words are those written by Ernie, not me!
Tuesday -- February 6th
Another great day. We got up early and went to radiation, then Maddie spent the rest of the day beating Dad at Uno over and over and over and over again. What fun! When she got tired of that she worked on her homework and made some Valentine's Day cards. We expect to be out of here by 9 tonight. We'll miss our roommate Gabby but it's great to be through our 8th session.
Monday -- February 5th
We finished up our last round of chemo for this session at 10:00 PM. There were a few minor glitches which required some additional medications to protect Maddie's bladder, but overall things went very well. Hopefully we will be out of here by tomorrow evening. Overall Maddie handled the chemo much better this round than in previous sessions. They've been giving her lots and lots and lots of extra fluids and this probably improved her ability to handle the chemo. Whatever the reason we are grateful for it. Maddie was able to spend the day with Valerie and Meghan. They had fun hanging out in the teen room and making jewelry.
Tonight, Simone (Dr. Hettmer) came by to talk to us about Maddie's x-rays. Last September Maddie hurt her spine when she jumped off the washing machine while playing with one of her friends. The cancer had weakend her vertabre and some of them compressed together. Simmone told us the surgeon had reviewed this weekend's pictures and has removed some of the restrictions on Maddie's physical activities. "She can ride her bike, go swimming and do other things like that, she added" I didn't have the heart to tell her she'd been doing it all along. But good news is good news and we take it as a sign of continued progress.
Sunday -- February 4th
Only two days left. Maddie is tolerating this round fairly well. Yesterday she did syringe art and hung out with Drake a bit. Someone generously donated paints and large syringes which all the kids shot at framed squares of stretched canvas. Afterwards there was a buffet-style dinner. It was a lot of fun. At home Michael took his karate test and was promoted to yellow belt. He did a great job. Master Hirdle spoke of self-disclipine during the graduation ceremony. He reminded all the graduates that black belts never have to be asked twice by their parents to do something. We're looking forward to the day Michael and the rest of the kids become black belts.
Tonight the floor is having a Super Bowl party. Maddie starts her chemo just before it but we're hoping she is feeling up to attending after she is done. She asked Michael to visit and was in high spirits. It was so wonderful to watch them together. Later on we caught up with Meghan and Val who are also in. On the lighter side....Mom complained to someone the smell of their leftover food was making Maddie naseaus. She politely asked if it could be thrown away. Before the offending delicacy could be removed Maddie blurted out "Mom! I never said that. You were the one who was complaining about the smell. Don't blame me."
Thursday -- February 1st
We started our first round of chemo since we hit the halfway point. Seven more sessions to go (including this one) spread out over 21 weeks. It feels good to be on the downward slope, even if we are only just starting out. Maddie was very nervous about her chemo treatment this time. As we were bumped out a week and there were no fevers between sessions, it seemed like a long time since we were last in the hospital for chemo. We spent most of the day at Dana Farber getting ready but didn't get going with chemo until after 5 and it was after 6 before we got over to Children's Hospital. We moved over just after they hooked up the first bag. Usually Maddie is very uncomfortable and stays in bed but she actually walked the halls and hung out with her friend Drake for a good portion of the second bag. Drake's Mom designs jewelry and she has raised about $16,000 for the Resource Room here at Children's selling Conquer Kids Cancer bracelets. You can see them at http://www.getbodyrocks.com/CKC.htm
The hospital is very crowded. We got the last room but we're fortunate to have a wonderful roommate. Her name is Gabby and she is 16. She's from Peabody. When Maddie was done with her chemo we went downstairs to get something to eat and, of course, she insisted on buying another webkinz. A webkinz is a small stuffed animal with a special code attached to it. After you buy it you can go online and register your webkinz. You then have an animated version of it on the web and you can invite your other friends to come play with their webkinz characters in your webkinz's house at a special webkinz web site. Sort of like cartoon chat for kids. Maddie has about 30 of these things, which I am sure is some sort of world record. Most kids are content with 1 or 2 but it's hard to say no to Maddie.
Afterwards Maddie fell into a deep sleep and I decided to spend some time reading Don's entries about the PMC. I wrote about Don and the PMC on the 20th of January. We've exchanged emails a couple of times since then and he has shared his experiences as a rider of the PMC. Each year after he rides he does a write up about his experience and sends it out to his sponsors. They're a great read and I'm putting them on the web site if you're interested. If you're thinking of riding in the PMC I'd say they are a must read. Lots of good tips. They'll be under the PMC link on the left. We'll also have info about Michael's efforts to raise funds when he rides in the Kids' PMC as well as Maddie's role as a Pedal Partner for MFS' team of cyclists.
When I finished reading them I kept coming back to something Don wrote in his 2003 writeup; according to the President of Dana Farber, in 1980 only 20% of childhood cancers were cured while today that figure is closer to 80%. That's a pretty stunning statistic and, perhaps I'm just getting old, but 1980 doesn't seem that long ago. When I look at all these kids and the full hospital rooms I'm very grateful it's 2007 and not 1980.
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