Friday -- November 30th
Well, it's official. Maddie has been "de-ported." We arrived at the hospital at 6:30 this morning for the 7:30 procedure. Maddie was very nervous. After checking in and getting ready, she got to choose the scent she wanted in her mask, to be used to help her "go to sleep." She sniffed 'em all and finally decided on the watermelon.
Leading up to the surgery, Maddie was not only nervous about the surgery itself, but she had mixed feelings about having her port removed. In some ways, she had gotten "attached" to it. In a sense, it was her life line for 15 months. It was going to be strange now being without it.
I got to put on the beautiful shower cap, gown and mask, and go into the OR with Maddie until the surgery started. No matter how many times you do it, it's still so hard holding your child and comforting them, as they go off to sleep for their surgery.
Maddie was in the OR for maybe an hour and in recovery for another hour, so it was pretty fast. She did great. No complications other than a very sore throat due to the intibation tube. Our Fellow, Dr.Simone, came by to see us before and after the surgery. We know how incredibly busy she is, so that was so kind of her to do.
It was funny. When Michael had his hernia surgery 10 1/2 years ago, he recovered in the same exact bed bay as Maddie did today. I remember it so clearly. Isn't that weird? Anyway...
Maddie is home sleeping on the couch. I put a nice fire on and we're hoping for a peaceful evening. Thanks everyone for your concern and support. She did great!
We have our next scan appts. set up for Feb. 4th and 5th.
Happy Birthday to Caroline! Hope your day is extra special! You and Maddie both have reason to celebrate!
Tuesday -- November 27th
Hope you all had a fun and safe Thanksgiving! Hard to believe it came and went and now we're already hearing Christmas toons on the radio and seeing holiday deorations everywhere we go! I haven't even started thinking about all the gifts to be gotten, the cards to be sent, the decorations to be hung...lots to do!
Thanksgiving was fun at my brother Mike's house in CT. We made great time getting down there. We usually leave in the afternoon and with traffic, the usual 2 1/2 hr ride takes 5-6 hours. So, this year we left first thing in the morning. Ernie took the dog, Maddie, William and Thomas and left at 7am. I took Michael and left at 7:30am - No traffic! Yippee!! My poor brother and his wife though...they weren't expecting anyone until 2:30 and we all arrived by 10am. We're here!!!!!
Ernie went back home Friday morning with the dog and the boys, Maddie stayed another night, and I went down to Norwalk (30 min further south) for another high school get together that evening. It was great to see everyone again. Can't believe a whole year went by since the big reunion last year! Spent the night at my parent's house with my childhood best pal, Cathy. It was like we were kids again! Good times...
Saturday morning I picked Maddie up and we drove home. Again, no traffic and we were home by 4pm.
Sunday we went to Val's house for the planned get together with the families from the hospital. A group of us have become great friends and these get togethers are so special. So, as we were getting ready to leave home, we got a call asking if we were coming, because everyone was there waiting. We were running late. Ok, we'll be there by 5, but why are they calling now? The party starts at 4 and it's 3:50...
We got there and I made my apologies that we were so late. An hour, wow that's pretty bad... We all laughed but as some people started to leave, I asked why they were leaving so soon when the party had just started at 4. Guess what? The party started at 2!!! No way! Are you kidding me?!?! Really blew that one!
So, we missed out on a lot of the fun but we still had a great time! I am hosting the next one and I won't screw that one up!
Stephanie Knowles was home from school for the break and helped us out with lots of babysitting hours throughout the week. It was great to see her! Thanks Stephanie!
Maddie's port removal surgery is scheduled for this Thursday. She's excited to get it done, but nervous of course. We'll keep you posted on that.
Ok, back to school and work for everyone. Have a great week!
Tuesday -- November 20th
Not much new has been happening. I have been trying to go through back logs of "stuff" that accumulated over the past year. Just trying to get organized, re-group, and settle back into a routine. Came across so many pictures from last summer that needed to be put into the kids' albums. It's amazing how fast they grew up in one year. So many changes for all of them.
Took the kids for their flu shots. It was pretty funny. They all prepared by putting Maddie's Emla cream on their shoulders an hour before going to the doctor. It's a numbing cream, so their shots were not painful, except for Thomas' because he squirmed.
Everyone has been pretty healthy. Maddie got sick Sunday night and wasn't able to go to school yesterday but she's feeling fine now. Can't believe Thanksgiving is just around the corner. We will be going to my brother Mike's house. Even Hope was invited! I tried to get her a slot in the kennel, but they were all booked up. Darn!
I'll cook a Thanksgiving dinner for us too at some point over the weekend. Love the smell of it cooking!
I'll be going down to CT. the Friday after Thanksgiving for another high school get together. Nothing formal, but everyone had so much fun last year, that a lot of us will be getting together again. I'm looking forward to it. I'll spend the night at my parents with one of my childhood best friends. That'll be great! We'll really feel like kids again!
Have a great day.
Monday -- November 12th
Hope everyone had a nice weekend.
Ernie and Maddie had fun down in Delaware visiting Lauren. Maddie came home wearing the blue hen mascot costume - a big hen pull over on her face and big yellow hands.
I had a good time at home with the boys. I took them to the corn stalk maze at Jane and Paul's farm. We all ran through it and eventually found our way out. It's a lot of fun. We fed the goats, ducks, and chickens. There were a few chickens on the loose. They were just minding their business, pecking around, until they encountered William and Thomas! I didn't know chickens could run so fast!
Last night, temptation and curiosity got the best of William. He dialed 911. He had been thinking about it for quite some time and just couldn't stand the suspense anymore. Well, an officer arrived and stepped inside to check out the situation. We made William fess up and he promised not to do it again. The officer was very nice and having a five year old of his own, he was very understanding.
No school today, so Michael went to work with Ernie and I'm taking the others to see the Bee Movie. It should be fun. Michael has created his very own Carepage. It's a great place for him to go and write about his own things. He's very excited and we'll be putting up a link on the home page of this site so you can just click on it and check it out. He'd love for people to write! Thanks!
Friday -- November 9th
Had a good meeting with our team at Dana Farber yesterday. Thankfully, our doctor, Simone, had kept us posted with the results of every test as they finished last week, so we didn't walk in there filled with complete anxiety. They said they are pleased with Maddie's scans. As I wrote last week, she is "stable." People ask me what that means. To keep it brief, it means that her scan results are unchanged since July. We watch her and we'll continue to pray, and hope you will too, that God and all of her Angels will continue to watch over her. When you think about Maddie's condition when this all started last August, you have to realize, where she is today is an amazing gift. We are so grateful and so incredibly blessed.
It sure has been a grueling 17 months. We have all gained and lost so much. I could go on and on about that, but I'll spare you! Our journey isn't over yet. In fact, in so many ways, it's only just beginning.
The plan now is to continue with her antibiotic 3x a week until February, to prevent pneumonia, and we will have the port removed from her chest the week after Thanksgiving. We'll do another blood draw right before her surgery to check her counts. Her liver enzyme was very slightly elevated, as has been the case since the beginning, and her platelets are about half of what the normal amout should be. Because of all of the chemo and radiation her body has received, her platelet count may never recover. We'll just continue to check her counts and more importantly, she will go through the entire full body scanning every three months.
In addition to our team, we got to see a lot of old friends at the clinic. It's always so comforting to run into the people you have been "travelling" with throughout our journeys. The clinic has gone through some renovations, so it's a little different. I had forgotten how long it had been since we were last there. New nurses, new trainees, new patients, new floor plan. So many changes, but still a very familiar place.
We stopped in at the hospital to visit after leaving the clinic. It was great to see everyone! There too, there are a lot of new faces, but we still feel so welcomed when we go back. In so many ways, you miss "it." You miss your friends, your nurses, the routine you had settled into for so long, the support, the care...you certainly don't want to be there, but it's a whole other transition you make back into some "normalcy" when you're off treatment. We're more than happy to be visitors now!
We have fund raisers coming up, hospital and clinic holiday parties, and God willing, in May, Maddie and I will be travelling to France, to the Holy place in Lourdes, if we are chosen.
We have so many pictures to post that are long overdue. There's still so much to share and although there won't be much specific "Maddie news" from day to day, we will still write often. This website has become very therapeutic. I hope you will all continue to check in!
Have a great weekend!
Monday -- November 5th
We had a nice weekend. My mother came up from CT. to visit. It was fun going out with her and my sister and just hanging out.
What a rain storm on Saturday. We sure have a ton of fallen leaves to clean up!
Ernie and Michael had a fun time together last night watching the football game. They were home alone, in the peace and quiet and ordered Chinese take out! I had taken the other kids with me to take my mother to the train station.
At bath time we discoverd a tick embedded in William's forearm. How gross! It was very small, but we're pretty sure it was a wood tick, not a dear tick. Anyway, he was so upset, but stayed so brave as I tried to get the tick to pull its head out, using a few old school tick removal tricks! It was a stubborn one and I finally had to just yank. Thankfully, the head came with it!
The cute part about the whole "trauma" was that Michael, Maddie and Thomas all huddled around him to comfort him while I worked on the tick! Maddie even handed William $1 to cheer him up! It's good to see that even through all the bickering and fighting, they all pull together when someone's hurting.
Who would've thought anyone could go on and on about a tick. Goes to show you there's not much new to report today!
Getting rid of the enormous bag of candy we have. Don't know who to give it to, but it's got to go!
Maddie's home sick from school today. She was up all through the night last night.
Have a great day.
Friday -- November 2nd
Wow - what a week!
We had full days of tests on Tuesday and Thursday and Halloween on Wednesday in between! SO glad the week is over!
Halloween night was fun. Michael was mustard as he planned, Maddie changed her mind and went from being ketchup to a black cat, William changed from SpongeBob to Spider Man, after finding the outfit in the attic, and Thomas stuck with Thomas the Tank. We'll post pictures tonight. Hope you all had a fun and safe night!
We got a call from Maddie's doctor last night letting us know the results of Maddie's scans. Her results show that everything is "stable." The results are the same as they were on July's scans. No new growth. We are so thankful for this news and thank everyone for holding their breath right along with us!
We meet with her team on Thursday the 8th, and then we also have to schedule the surgery to have her port removed from her chest. We are thinking that will be the week after Thanksgiving.
We will go for re-scans in 3 months, and until then we'll keep praying that she will grow stronger every day and stay healthy! With that said, the school nurse literally just called...Maddie is not feeling well and wants to come home. She has an upset stomach. We were told she could have residual side effects from the radiation for months out.
So, gotta run and get her. Thank you again for all of the love and support you have all given us. Have a great weekend!
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