Posts from December
Sorry we haven't written in a few days. The days have been so busy. Maddie was to start her skull radiation on Thursday, but was very nervous and unable to do it. We made a plan together. Maddie agreed to take some medicine at the house in the morning before we go, which will help her relax for the first time, and then she may not need to do that after we get through it. It's the fear of the unknown for her. We brought her face mask home to have her practice laying still in it for 10 minutes, to get used to the feeling. Her friend, Molly, was with her at radiation on Thursday, so the two of them decorated Maddie's mask, to make it less intimidating. I think Mrs. Coletta managed to write the words "Mrs.C. rocks" on it. We will start the skull radiation on Tuesday, if all goes well. Maddie has been dealing with a very bad burn on her hip from the radiation. She has to put special cream on it 3 times a day to help keep it from blistering. She has been doing well with her antibiotics.
The kids are all loving Hope. She is a good dog...if you like dogs...I was told she would be very therapeutic. Does that mean in a good way for the kids or that I would need therapy? Maybe both? She is a lot of work, as we were warned. More work than a newborn. Wish I could slap a diaper on her... She discoverd that there's a whole new world beyond the baby gate. We let her venture out, only under strict supervision, until she's fully potty trained. She really is a sweet, tolerant dog. We got lucky.
The kids have had some fun playdates over the break and Lauren is visitng for the weekend. We're all looking forward to the new year, with hopes for health and happiness for all. Happy New Year to youl!
We're home! Maddie's counts jumped dramitically yesterday and we were able to check out late in the day. The fever she had was brought on by a bacteria in her blood but it's not the same kind she had last time. We have special antibiotics we'll take over the next few weeks to get rid of it. If it comes back we may have to have her port changed out. Maddie spent Tuesday evening with Hannah who is getting ready for a bone marraow transplant. She moved to a different wing today and will have to spend the next few months in isolation. They had a "Last Day" party in the nurses station and ate assorted cakes and cookies with them. Someone brought in Cider Champagne and they giggled the night away while they toasted Hannah and made up nicknames for each of the nurses and doctors. As the Christmas holiday began to wind down the floor started filling up and we finally did get a great new roommate; a sweet girl from Haverhill named Ashley. At home, Maddie spent the entire evening with Hope. They're already inseperable.
Maddie had a wonderful Christmas. If you can't be home, this is the place to be. After she opened her presents Santa came by to drop off a gift he forgot and make sure everything was OK. Later in the day the entire Herold/Baker clan arrived for a Christmas celebration. The nurses had to move the empty bed out of the room to make sure everyone could fit comfortably. Maddie had a great time opening her presents and showing off her new keyboard to everyone. Uncle Dean even brought Dad a bottle of "Holiday Cheer" for the football game later on. Thanks to all for making our Christmas a special one.
Maddie woke up at 5:30 this morning to find a big pile of presents and her stockng from home next to her bed. In it was a note from Santa. Michael had written him asking him to bring Maddie's presents to her in the hospital. He gladly obliged. There was also a big bag of gifts from Children's. Mom listened in on the phone while Maddie opened each one. Afterwards we said a prayer thanking God for the gifts of Health, Family, Friendship, and Love. Great gifts from all of you that have sustained us these four months. Merry Christmas everyone!
Despite our best attempts to keep everyone in lockdown mode until Christmas, Maddie developed a pretty good fever last night and had to go back in the hospital. A big thanks to the Norfolk fire department for a great ride in. Maddie has some sort of quick growing bacterial infection and it will be at least 3 or 4 days before she can get out. She knows Santa will find her wherever she is and the parking garage has already been notified that her cousins from CT and Massachusetts will be using up all the spaces. We have a double room to ourselves so we should be able to have a great celebration. On the plus side Maddie was home long enough to meet the family's new dog Hope. It's a 3 month old golden Labradoodle. Hope flew up from Florida yesterday (first class, I think) and met the kids shortly after dinner. She's outgoing, friendly and extremely huggable. She's a real keeper.
This afternoon we had a wonderful visit with Mammy, Pop-Pop, Michelle Knowles and Mom and the boys. Maddie had been very upset most of the morning about not being home for Christmas so Mom schemed with Michelle to sneak Hope in the hospital during the visit as well. Michelle managed to get by 2 security checkpoints and the nursing station without any trouble. Perhaps they thought she was on her way up to the maternity floor (do they have one here?) or perhaps there was a little extra Christmas spirit in the air... Either way, the smile on her face said it all. Mom also brought in the keyboard we bought her for Christmas. Maddie's been aching for one ever since she started piano lessons at Dana Farber. She's been playing it for hours and it doesn't look like she's going to end any time soon.
Maddie seems to be recovering much better this time from the nausea. She is just so happy to be home, hanging out with her brothers. Maddie felt well enough to go on her annual outing with Michelle, to get their nails painted with holiday designs. Maddie got a snowman on one nail and a wreath on another. We had a very special meeting in the morning with a couple who make an annual pilgrimage to Lourdes, in France, to visit the Holy shrine. We are so blessed to have been chosen to be candidates for this experience. Wouldn't that be such an amazing gift if we were picked to go?! We go to radiation and clinic this morning
We are home! It was a tough 6 days. Last night I wouldn't have thought we were going to make it but Maddie finished off perfectly! The nurses at Children's really took great care of Maddie. I'll let Kristen fill in the details later, but I did want to get something out here to let everyone one know Maddie is safe in her own bed.
Mike and Priscilla left early this morning. It was another fun time spent
with them. We were sad to see them go. Hope Mike's GPS got them safely
home...he loves that thing!
Today I brought the boys in to visit with Maddie and Dad for lunch. They had
been missing her and their Dad, who has been with Maddie since Thursday.
They had a good time getting lunch in the cafeteria, playing in the
playroom, playing with the bed controls, and riding up and down in the
Our neighbors, the Dowling family, sent us in with a basket full of adorable
gifts for the kids on the floor. Maddie was so excited to hand the gifts out
on their behalf. The kids were not feeling well, but when they picked a gift
from the basket, it truly brought a smile to their faces! Thank you so much
Dowling family for your thoughtfulness! The Altmeyer's popped in for a visit
late this afternoon. Maddie loved seeing Lauren and Kristen! Thanks for making the trip.
Maddie is having a tough time, but she is strong. She's so happy to be
sharing a room with Hannah Banana again! We hope she will be home on Tuesday
and pray for a healthy week...at home!
A pretty quiet day so far. Maddie has been sleeping most of the day as she didn't get started with her chemo until 11:00 last night. We were up until about 2:00 and then Maddie finally fell asleep. Pam, her nurse, did an awesome job helping Maddie get through the first round. Yesterday, at Dana Farber, she had another piano lesson and got see her friends Caroline and Val. They shipped us over to Children's early so we were there by 2:00. Maddie was fortunate enough to get Hannah again as her roommate. She refused to let them put anyone in the room with her except Maddie. They has a great time hanging out and playing in the resource room together. Maddie was a little nauseasous this morning but not too bad. She had a nice visit with Amos (Children's visiting dog) and told him all about the dog Mom is researching for her (If she does any more research on the matter she'll have earned her doctorate...). Radiation went well and today is her last day of antibiotics (yea!). We're hoping things go smoothly tonight.
Maddie is off to the hospital this morning. We're hoping for a smooth round and hopefully she'll be home on Monday. Priscilla and Mike are back to help out for a few days. They brought more fun Christmas decorations, but no lard...there's a picture of them on the website "watching the kids for me." Wait a minute...are they sleeping?!
We had a fun night last night. We went for our annual Santa photo. For the first time in years, there was no line! Our lucky night! The picture should be great - Thomas screamed and cried on Santa's lap. William was rolling his eyes, saying "Oh brother Thomas, you're crying again?! You cried the last time!" What a classic...
We would like to say a huge thank you to our friend, Tommy O'Brien. Tommy and Maddie have known each other since they were babies. Tommy is in the 3rd grade at the Clyde Brown School in Millis, MA. He asked his class to write cards for his friend, and the other day Maddie received a beautiful envelope full of cards! That was so thoughful of you Tommy - you're an awesome friend!! Thank you to your classmates and we hope they like the Maddie bracelets you handed out!
It's been a pretty calm week so far. Still continuing around the clock with Maddie's antibiotics. She is doing well with her radiation. Just having a little bit of nausea as a result. We have decided to hold off on her skull radiaiton until after the holidays. Maddie goes into the hospital tomorrow for her next 5 day round of chemo. Caroline will be in, so she's excited to see her and her other friends. Maddie continues to receive touching, thoughful gifts and cards. We still can't thank everyone enough. She received a batch of cards and homemade cookies from the children at Elias Howe Elementary School in Bridgeport, CT. yesterday. Thanks kids - you're awesome!! We hope to meet you one day. We are sending Maddie bracelets to you today.
Michael and William are doing great in Karate. They both have their official uniforms now and are really excited to start earning belts!
Friday was a big day for Maddie. We went to radiation in the morning and then Maddie had her face mask made, in preparation for radiation to her skull, to begin on Monday.
We enjoyed a fun Saturday morning at the Altmeyer's annual Christmas party, where Santa made an appearance. The kids always love that party! Saturday night Mom and Dad got to get out and enjoy themselves over at the Palmer's for a Christmas party. Lots of laughs with a group of great friends!
Maddie has done well with her at home IV antibiotics. We had a small incident Saturday night. Her line broke loose from the syringe and blood started to flow through the line. We fixed the problem but then had a lot of air in the lines that wouldn't clear. Maddie was very upset and our nurse, Pam, who lives in Norfolk, came over to help us out. Thank you SO much Pam! You're awesome!
Today was a fun day. Everyone was up early and the weather was perfect...sunny and about 50 degrees. Michael, William and Thomas helped Dad cut, split and stack firewood. Katy Lilly, a long time friend of Mom's, came by for coffee and brought awesome homemade cookies. Mom's friend, Beth Hill, stopped by too. It was nice to see them both. Jeanne and Dean came over with Charlie and Abby and the kids all had fun playing in the sandbox, the tree fort, and helping Dad out. Towards the end of the afternoon, we all piled into the car and went to play indoor mini golf at Monster Golf. It's a really cool glow in the dark golf course. Of course we played the arcade games too, and won lots of prize tickets, enough for everyone to win a treasured trinket or two. It was dusk when we finally got out and we stopped at McDonalds for two happy meals, then on to Taco Bell for three tacos...then a second McDonalds for another happy meal and a cheeseburger! Hungry kids and Dad! At home we finished decorating the tree. It looks great! Hope you all had a great weekend as well.
Things have settled down. Maddie is home and feeling much better. She has a portable IV machine so she can continue her antibiotics. It's a little more complicated than Dad thought so Mom is in charge of it. We're hoping for a nice relaxing weekend. The Dr's have decided to radiate Maddie's skull as well as her hip. She had large tumors in both spots and they know chemo alone can't keep them from coming back. Maddie is being fitted for a mask today. She's already seen some the one's the other kids use so she is pretty comfortable with the process.
Maddie will be coming home today. The doctors have arranged for her to have an IV and she is going to be able to finish up her antibiotics at home. We're all very excited about it. She's also continuing her radiation treatments and so far they have been going well despite everything else going on. Hopefully it will be smooth sailing for the next week until she has to go back in for more chemo.
Every day we are touched by the generosity and support of family, friends, coworkers and many people we don't even know. We can't possibly tell you how much it means to us. At times it's beyond comprehension. Today we'd like to say a special thank you to Brendan and all of his friends. Brendan recently turned 9 and in lieu of gifts he asked his friends to write cards and donate the gift money to Maddie. Below is the note he sent out with his birthday invitation:
My friend Maddie Savoie was recently diagnosed with bone cancer. She is undergoing very aggressive treatment to get well. She is a brave girl and she is fighting real hard to win the battle, but she needs all the help she can get.
So for this year, I want to give a gift to Maddie and her family. The best present you can give to me is the money that you would normally spend to buy a gift for me. I will give that money to Maddie's parents who can use it to pay for hospital expenses, child care and lots of ther things they really need right now.
Please remember to say a prayer for Maddie as well.
Thank you Brendan! You and your friends are very special. And thank you everyone else who has helped us out in countless ways. We couldn't do this without you!
Mom has informed Dad that Maddie had a sore throat and not a sort throat. Just like Dad, always mixing work and home life... Anyway, Maddie has a bacterial infection in her blood and we are not sure when she will get home. It could be tomorrow or it could be longer. They are trying to determine what type of bacteria it is and waiting for her counts to go up. We are all hoping it will be tomorrow. Fortunately Mom brought in lots of Maddie's homework and she is catching up on that. Maddie is also having a good time with her roommate Hannah. She's twelve and lots of fun. Her friend Meghan checked in yesterday and she's been able to visit with her as well.
Maddie woke up Sunday morning with a low grade fever and a sort throat. Dana Farber had given us tickets to the Patriots game for Michael and Maddie but unfortunately Maddie wasn't able to go and watch the best team in the NFL beat the Detroit Lions. She was very disappointed and upset. Thankfully the Cooper's were able to take Michael and he had a great time with his friend Holden. As expected, Maddie's fever continued to climb throughout the afternoon and eventually we had to bring her in to Children's. They put her on antibiotics and today she's getting a transfusion. We're hoping she'll be good enough to come home Tuesday.
Maddie went to school yesterday but, unfortunately, felt sick 1/2 way through the afternoon. I was down in Attleboro when I got the call, so thank you Heather for picking her up and bringing her home unitl I could get back.
Aunt Priscilla left today. Uncle Mike came up last night to re-claim her. She had been here since last Friday. The kids had so much fun making donuts and gingerbread houses with her. Thank you Priscilla for a great week - we'll miss your lard! Thank you both for the beautiful Christmas tree! Mike set it up and Priscilla "fluffed it!" She's a great "Fluffer!"
We had such a fun last night with the two of them. We wanted to pull a prank on Paul and Lorraine (Altmeyer). Mike is an excellent bagpipe player and had his instrument with him, so we sent him next door with his bagpipes and a sign around his neck, asking for donations. Priscilla and I listened outside the window and heard Mike start playing his songs. I was on the phone with Lorraine and she asked her daughter, "Where is that music coming from? Is that a bagpipe? What the @#$*? Kristen, there is a guy at my front door playing the bagpipes!" "What?! No way. That's weird..." She wouldn't let me hang up with her while she opened the door. Ernie popped out of the bushes and they all cracked up! They said Lorraine's face was priceless! We wish Paul had been home too, but Lorraine and Lauren came over and then Paul and Kristen showed up and joined us for a fun night.
Today was a fun day. We went to the Dana Farber Christmas party at the Newton Marriott Hotel. Our doctor, Dr. Grier, was Santa, and our Fellow, Dr. Simmone, was an elf. It was a beautiful party and the kids really enjoyed themselves. Thank you Dana Farber!
Today I wen`t to Radiation with dad! It wen`t really well! IT was so quick that when you get on the table you`re done!!! My naseau is a lot better today. We had to get up at 5 am today but we where home by 8 am. I might get to go to school today!!! Thank you everyone for all the nice gifts and prayers and I know God is listening to you because I`m geteing a lot better. Thank you all so much for all the things you`ve done. :) -maddie
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