Saturday-- March 31st
So far we have been enjoying or time at home, fever free. Maddie's counts are bottomed out right now at 0, so we have to be extra careful.
Tonight we are staying in, watching the much anticipated Kids Choice Awards Show, so we had to start the night off right. Maddie and I went to the grocery store . Of course, she had to wear a mask. That's no fun when you want to eat a slice of cheese from the deli! Maddie wanted lobster...yep, lobster...excuse me, how much a pound? So, we got a few of those for the two of us. Ernie and Michael wanted grilled cheese BLT's...ok, that's reasonable. Then we stocked up on the chips and wine, and we're ready for a party! We're all waging our bets on the winners and there is petty cash involved! Of course, Ernie is a little out of his league, but I like to think that I'm still hip enough to pick some of the winners!
We cleaned out the garage today...are you all getting tired of reading this stuff? Anyway, it was kind of sad to toss the old Little Tikes cars and Maddie's out grown bikes. Michael's outgrown bikes will be handed down to William and Thomas, although for now, William insists on keeping his favorite bike - the pink Barbie bike that was Maddie's. I'm planning on buying him a boy bike for his bday (April 3rd!), but I'm afraid he won't like it as much as the Barbie bike.
We met our new next door neighbors today. They officially moved in last night. Their names are Stephanie and Brian and they're really nice. We're looking forward to becoming friends.
Well, that's it for now. We've posted some more pictures on the picture page and we hope you're all enjoying the weekend.
Wednesday -- March 28th
She's home! We got home really late last night. Michael took the ride with me. Maddie had asked for him to come in and Michael really wanted to go. Michael and I sang the whole ride. Well, he sang and I pretended I could sing. Bet he was thrilled when we shut the car off! Thank you Lorraine for staying here with the kids...and Hope. Did you two bond?
Maddie will be getting hydration every day again to help get over the nauseau and to keep her bladder healthy. We have to flush her picc line every 8 hours to make sure it remains clean and open.
So nice to have all the kids together again. Maddie slept in our bed and snuggled right in. She was SO happy to be home. Ernie stayed up to unwind, and Maddie and I giggled for a little bit before falling asleep. I asked her if she wanted me to put her head up on the bed. Then we both made the fake sound of the electrical hospital bed moving. She loves to have her head upright when she's in her hospital bed. I don't get it! How do you sleep sitting up? When I sleep in the bed with her at the hospital, I try to sneak the head down a little bit as she's dozing off, but of course, she rolls onto her side and pushes the up button. William woke up and the first thing he asked for was Maddie. He couldn't see her sleeping deep under my covers.
It should be a nice day today. We're ready to enjoy the fresh air!
Tuesday -- March 27th
Maddie will be coming home tonight, although very late. You have to wait 24 hours after your last chemo to be discharged, so that was late evening yesterday, plus she has to get a blood transfusion after that 24hrs, before she can go home. So, I will go pick Ernie and Maddie up tonight, around 11pm. So excited to bring them home. Michael read yesterday's entry and asked if he could write today's. I said sure. He wrote the following entry all on his own.
Hi everyone. It's Michael. Yesterday, I was reading the most recent entry and it made me feel mixed emotions. I just want to say thanks to everybody who helped out and we're almost done. Special thanks to:
Dr. MacGrory -- for letting me come see you every week
Mr. and Mrs. Piscatelli -- thanks for all you've done
Mrs. Balfour, Mrs. Kiewlich and Mrs. Godfrey -- Mrs. Balfour - thanks for Maddie's gift basket - Mrs. Kiewlich and Mrs. Godfrey - thanks for the line dancing night, it was very fun
Student Council -- great idea of line dancing night!
all of our 'sitters -- we're glad to have you guys help
all people who pledged money to my PMC kids ride -- Still need to meet my goal, $5,000! Thanks!!!!!! :)
everyone in the guestbook -- your support has helped us.
Even though these are SPECIAL thanks, I want to say thank you very much to everybody reading this.
If you want to pledge to me, read this: (copied from Feb. 25 entry-- For those that have already responded, we're still waiting on PMC to open up the registration site)
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 email@example.com and I will send you the link to support me once it becomes available on the PMC web site.
Monday -- March 26th
Being in the hospital the other night with Maddie was a little harder than usual for me this time. I immediately realized we were in the same room as we were on the very first night Maddie was diagnosed, 7 months ago on the 24th. Room 632, the A side. It was just so strange and surreal being there again. This time we were the "veterans" and our roommates were newly diagnosed. I listened to their concerns about being discharged for their first time and how anxious they were about what to expect. It's all so overwhelming, especially in the beginning, when you're bombarded with information - total overload. I knew what they were going through.
I layed next to Maddie as she slept, and couldn't help but think about all we've been through, recalling every detail of that first stay. We got off the elevator on the 6th floor and stepped into a new world. We walked down the hallway to our room and Maddie looked around, tugged on my shirt, and whispered, "Mom, I think they all have cancer here." I layed in the same bed we were in now, with Maddie that first night, whispering with her. She said to me "Mom, do you think she has cancer?," referring to our new, first roommate and friend there, Chelsie, on the other side of the curtain. I said, "I think so, why?" She asked me, "Is it contagious?" I said, "No." She said, "Oh phew, 'cause I was gonna say maybe we should change our room if it is, so we don't catch it." I held Maddie, knowing that I would be telling her the next day, that she has cancer. I watched her have her last carefree, innocent sleep. I didn't sleep that night.
I remember listening to the sounds of Chelsie's machine beeping or "ding donging" and ticking, not knowing if Maddie would be using those same machines. I felt so incredibly lost, scared and alone, as I looked at my beautiful girl in her bed, knowing she too would be bald soon like Chelsie. I remembered the embarrassing "oops" moment the first morning when I asked Chelsie and her Mom if they had any shampoo and conditioner I could borrow! We all laughed...you have to laugh.
The other day, I went to the kitchen for a spoon for Maddie and there was a woman in there who asked me, "How's your day going?" I felt like being honest and after a short pause said, "My day sucks quite frankly. All the days here suck..." Was I too crass or just being honest? So many times you reply with a smile and say, "Oh great and yours?" I just felt like being honest. Then she asked me if I thought it gets any easier. Again, instead of fluffing it and responding with a smile, "Oh yes, definitely." I said, "No, it just gets different. You go through so many stages, different stages, and you just have to get through it one day at a time." I left the kitchen with my spoon in hand and some parting words for my new friend, "Hang in there." "You too," she said.
The kitchen is where the parents all meet up and talk, a place out of your child's view and earshot for a few minutes. It's like a therapy session, if you're honest and real. I needed that outlet for that moment and I needed to be honest. I shouldn't feel badly about that right? I don't know...I do feel badly. Maybe that woman needed to hear something more upbeat and comforting. I feel badly that I couldn't give her that at that moment. I had done it so many times before...
Then you wonder, who are these people? What is their "pre-cancer" story? We all had some other life before cancer... We've met so many wonderful, interesting people through all of this, many whom will be our lifelong friends. For this, we are grateful that fate introduced us.
I look at Maddie today and I am truly awed by her. She has been through, and continues to go through such an incredibly challenging journey, one she has to take, and she took it on like a prize fighter. She continues to fight every day, and does it with such amazing strength, courage, and spirit. She's just a little girl who is such an incredible source of inspiration. Her smile still lights up the room and I actually draw my strength from her at times. I am so proud of her.
Leaving the hospital is so hard. You want to be in both places but you can't. I know I'm going home to my boys, but it's so hard to leave Maddie there with Ernie. I drive by other cars filled with families on their outings and I cry. I want my family all together and it's just so hard. I wish it got easier.
There are so many ups and downs and we always try to keep our entries upbeat, encouraging, not knowing who's reading them. But for me, I feel that being honest and real is therapeutic. It's a very long, tiring, difficult journey we have been forced to take in our lives, all of our lives, because everyone in the family is so deeply affected, but as hard as it is, I do think about how blessed we are with our family, friends, town, and amazing medical care (oh, and let's not forget about our health insurance coverage!). I want everyone to truly know that without you, each day would be so much harder to get through.
Sunday -- March 25th
Overall Maddie has been doing extremely well with this round of chemo. Friday was a bit tough, but despite not feeling well she insisted on getting all of her tests out of the way. She could have done them any time before Tuesday but she opted to get them over with right away. Yesterday and today she has been feeling pretty good. There have been some issues with her picc line not working well and she is very nervous about possibly having it replaced. We are hoping this won't be the case. Despite all this she is handling the chemo well and she hasn't had any of the issues she had previously with her bladder. Hopefully things will continue to go smoothly and we will be able to leave here on time on Tuesday. Mike and Priscilla are helping out at home and yesterday the boys went to visit Pat and Judy with them in Spencer Mass. Pat has a large collection of original pinball machines he has restored. No reports yet of any serious damage....
Thursday -- March 22nd
We checked in at Dana Farber today and all of Maddie's counts were up so we were able to start our six-day session. It was extremely busy at the clinic but we were fortunate enough to get a bed on 6N at Children's. Our roommate is CJ and he's from the next town over. He reminds us a lot of William. While we were at the Jimmy Fund Maddie's friend Caroline showed up. She and Maddie spent the entire day together curled up in the same bed watching movies and playing Nintendo. Good thing they have the same doctors. We also saw Maddie's last two roommates Andrea and Maddie. With so many people there the day passed quickly and we were able to clear for chemo late in the afternoon. Maddie has tolerated it well so we're off to a good start.
Wednesday -- March 21st
Tomorrow Maddie is going in for her next round, if all of her counts are high enough. We're waiting to hear.
Maddie is doing pretty well adjusting to her picc line. Yesterday morning it jammed when we tried to run her antibiotics, but our nurse friend, Pam, was just getting off her shift from the hospital and came by to help out. Luckily, she was able to clear the line and save us from having to go in. Thanks Pam!
Hope came home yesterday from the Vet. She was there overnight getting spayed. Ernie and the kids were all upset with me for doing that because they all wanted her to have puppies!! Imagine that...hmmm... yeh, the dog breeding business sounds like a blast... So, here's the update...our guaranteed "35 pound max, non-shedding" dog is already 37 pounds and shedding like crazy!!! Have I mentioned yet how much I love having a dog?
Maddie was able to get a tutoring session in with Mrs.Taylor yesterday. She is doing pretty well with her school work. She knows she has to work hard if she wants to pass with her classmates.
OK, that's all for today. Keeping our fingers crossed that Maddie will be admitted tomorrow, to keep on schedule and keep things moving forward.
Monday -- March 19th
Maddie has been doing pretty well since her rough week. The boys were so happy to see her when she came home. They had decorated the house with signs and they were so excited to celebrate her birthday at home. She has been able to see a few friends and will be able to get a few tutoring sessions in before she goes in on Thursday for her next 6 day round. The treatment rounds come around so fast. We just left there... Anyway, Maddie is still uncomfortable with her picc line, but will have to get used to it. She won't get her new port for a few more weeks. Her old port tested positive for bacterias, so it was a great thing it came out. She is on antibiotics for a while, to make sure the bacterias have been cleared away. Lots of people to thank for making her birthday so special, so thank you notes are in the works. Thanks everyone!
Friday -- March 16th
Maddie's birthday started about 6am when nurses quietly started dropping off cards and gifts at the foot of Maddie's bed while she slept. She had been up until 3am because she was worried about getting her picc line being put in. By the time she woke up cards and posters and special deliveries seemed to be coming in non-stop. As the morning wore on she eventually wandered down to the Playroom for some arts and crafts and after a while she was told the doctors wanted to see her down in the Resource Room. She was understandably nervous because she thought it had something to do with her procedure which was scheduled for after lunch.
Much to her surprise she was greeted by a giant pink gorilla. Mom's friend Beth had arranged for Pinky to visit and sing her a very special birthday telegram. Afterwards a magician came and did some fantastic tricks. He even stuck a pencil in his ear and had it shoot out his nose. Everyone was pretty grossed when he stuck it back in his pocket without even Purelling his hands, but it was a good trick just the same.
Later on Maddie met up with Meghan who stopped by for a birthday visit. Meghan is also good friends with Maddie's roommate (who also happens to be named Maddie) and the three of them set up a painting session in the room. Kevin, from the Hole in the Wall Gang, which is a camp sponsored by Paul Newman, was in and helped them out with it. The pictures were quite good. Maddie's other roommate, Andrea, also came in to wish her happy birthday. She had just left the hospital the day before after a week-long stay. (Are you following all this?) The girls had a great time with one another and it was an awesome distraction before Maddie finally had her picc line installed.
After the line was installed and Maddie woke up all of the medications seemed to catch up to her. When she found out they put the line in her right arm instead of her left arm she went into a rage that didn't end for a almost three hours. There was nothing anyone could do to console her. She was so frustrated and angry. She didn't want to leave the hospital and we didn't get home until after 7pm.
Unfortunately we ended up going back to the emergency room around midnight. Maddie was getting her antibiotics and her picc line stopped working. She was so frightened she would have to go through another procedure (she also insisted this wouldn't have happened had they placed the line in the correct arm). Fortunately Pam, who is from Norfolk and one of Maddie's primary nurses, was on duty. She met us down in the ER and was able to get the line working again after a couple of hours. Despite the fact we didn't get home until about 4am, that was probably the best birthday gift of all!
Thursday -- March 15th (Birthday Day!)
Tuesday seemed to be a real dog-day. The entire day seemed to revolve around man's best friend. It started out with a visit from Maddie's friend Denise, who works at Dana Farber. She motored over on her scooter with a life-size Golden Retriever that looks a lot like Hope. After that Mom and Maddie and her friend Michael went downstairs to Puppy Pre-op. Michael is also from Norfolk and is in for a fever and problems with his port as well.
For Puppy Pre-op, the hospital had a surgical team near the auditorium handing out small stuffed puppies which were x-rayed, IV'd and bandaged for all the kids. Each child got to keep their puppy and x-ray (yes, it was a real x-ray. Wonder what the hospital bill is for that?) and got to help give their dog a pre-op checkup.
Later on Maddie's friend Meghan stopped in to visit. She just got a new puppy and the girls had a great time talking about dogs and visiting with one another. It was a super distraction before the surgery.
After the surgery Maddie seemed to be having a lot of discomfort. She didn't get back to her room until dinner time. A short while later her roommate Andrea had her sister sneak in a real dog for a visit. It was a miniature Chiwawa. Talk about turnaround. Maddie instantly brightened and all of her worries seemed to fade away. After a few hours she was back to her old self. Don't every say pets don't make a difference in the healing process.
Maddie's new roommate's name is Maddie as well. We've roomed with her before and it's lots of fun and confusion when the two get together. Today is Maddie's birthday. Many of the nurses and doctors have been secretly dropping off small gifts and cards throughout the night and there are other surprises in store. We expect the picc line to go in about 1:30. After that we need to rest up for a couple of hours, get our chemo and hopefully we'll be home in time for dinner and cake! Thank you all for your prayers and well wishes. You've really helped Maddie get through this week.
Wednesday -- March 14th
Maddie had a long day yesterday, between her anxiety and anticipation about her surgery and then the actual procedure and recovery, she was exhausted by the end of the day. To give you a sense of Maddie's strong will...the anesthesiologist gave her the drugs to sedate her before going into the operating room. We were in the pre-op room and she was sitting on Ernie's lap crying, and I was sitting directly in front of her on the bed. She just kept repeating that she didn't want to do it and the doctors were all looking at their watches in amazement as the time went on, at how long she was able to fight the drugs! She is just so incredibly strong and determined. They finally ended up giving her another dose.
The removal of her port went smoothly. She was very uncomfortable when she woke up, but with the help of lots of pain meds, slept for a while in recovery and then we went back to our room. When she woke up, she was cheered up by a visit from our roommate Andrea's puppy. Andrea's family had smuggled her in. She was so cute! She was so tiny and Maddie snuggled with her in bed. Our roommate Andrea, and her Mom, Amy, were so sweet. We had a good time with them.
Maddie felt pretty good this morning. Her chest wasn't bothering her as much as the two IV's in her hand and arm. She didn't want any pain medicine. I think she's just so tired of taking anymore drugs than she has to. She is nervous about her surgery tomorrow, to put in her picc line. It's a long line that is inserted near her elbow and runs up her arm, under the skin, around her shoulder and down into her chest, into the major blood vessel near her heart. She will get her chemotherapy this way until her body is completely rid of the bacterias and she can have a new port placed in her chest.
We are hoping she will be able to come home tomorrow, a few hours after the procedure, and be home to celebrate her birthday! It has been a long week and to be home tomorrow would be the best birthday gift ever! Please continue to say prayers and we'll keep you posted. Thank you!
Tuesday -- March 13th
Quick update: Everything went as expected. Maddie did very well and is resting comfortably in her room.
Maddie is having her surgery at 3pm today. We expect everything to go smoothly. Her counts have come up (which will help) and the extra day she asked for has really helped her work through her concerns. We'll keep you posted on how things go.
Monday -- March 12th
It has been a long 5 days for Maddie. Sunday the doctors decided Maddie's port needs to come out. She was quite devasted when we told her. This has been a long-standing fear of hers and she has fretted about it since Christmas when it was first suggested this might happen if she continues to get infections. It was difficult to tell her and one of the hardest conversations we've had in a long time. You could see the fear in her eyes. It was made worse when we told her she'll have to go through the procedure again because they can't put a new port in until the infection in her bloodstream clears up. Maddie continues to be a true fighter though. The doctors wanted to take it out today but Maddie asked for one more day to get ready mentally. It means she definitely won't be home for her birthday on Thursday, but she felt she could deal with it better if she had a little more time to prepare. Thankfully they let her do that. Even a little say in what's going on makes a big difference.
Sunday -- March 11th
Maddie's still in the hospital and we're not sure when she will get home. Her counts are still down and they have finally identified the bacteria in her blood. It's one of the same ones that occurred in her port before. We're not sure what that means just yet and we're waiting to have a discussion wiht her doctors about it. Kristen stayed over Saturday. She must have some kind of pull because she was able to get Maddie down to the 6th floor. To top it off she got the B side of the room (that's the side with the window bench for sleeping). Leave it to Kristen....
Friday -- March 9th
As usual, Maddie's bounced back from her fever. You wouldn't know she was the same kid who came in here through the ER. As she was feeling so good we decided to walk over and visit with our 'old friends' in radiation. It was fun to see everyone again and I wasn't sure I would ever get Maddie out of there.
Later on, Mom's friend Beth stopped by and graciously agreed to lose about about 20 hands of Uno to Maddie. Maddie has taken up the game with a vengance and plays constantly. We finally got a roomate; a sweet little girl from Chile named Francesco. She only speaks Spanish and the only Spanish Maddie and I know is from the TV show Dora the Explorer. Needless to say we just wave and smile a lot. Fortunately her parents are fluent in English.
Later in the day Maddie's friend Meghan sent up a dinner invitation from the 6th floor. A local restaurant, 'The Linwood Grill & Barbecue',was putting on a big spread for everyone down there. Lots of barbecue ribs, chicken, pulled pork, sausage, gravy, mashed potatoes etc., all the good stuff that wouldn't be allowed on the cardiac floor. It was fantastic. Afterwards the girls hung out in Meghan's room and played with their Webkinz's and Nintendo Ds for a couple of hours. It was nice just to watch them. We're still waiting for Maddie's counts to come back up and she does have a blood infection. We won't know what that means for her port until they can identify the type of bacteria in more detail.
Thursday -- March 8th
March Maddness ... Unfortunately Maddie had to go into the hospital last night. She developed a pretty good fever and became quite sick as the night wore on. Usually if she is going to fever it is a little further out, but it seems to get harder and harder to bounce back from the chemo.
We started out in the ER and ended up on the 9th floor again. Maddie was pretty upset about it but we are working to get her back down to the 6th floor where her friends and favorite nurses are. We'll probably be here at least 3 days if not more. The usual stay is about 5 days. She has to go 48 hours without a fever and her white blood cell counts have to be over 200. They're at 0 now. On the plus side the lab tests have been coming back negative for any kind of blood infection. A couple of her fevers in the past were caused by bacteria in her port and Maddie has been worried we would have a repeat of that because they would have to take it out and put in a new one.
Wednesday -- March 7th
It's not the cover of Rolling Stone, but we're getting there. Today Maddie and Kristen picked up the mail which included a copy of Dana Farber's Winter 2007 Impact magazine. Guess who was on the back cover...
Monday -- March 5th
(If you looked out here on Monday or earlier today and did not see an entry, no you are not going crazy. We did not have an update. Kristen sent one to me yesterday but I was not able to post it until today, Tuesday, March 6th. As she does not permit me to edit her text, I am just posting it with this brief explanation, of which she had no part in crafting but I am sure she would want. -- Ernie)
It was a pretty quiet weekend here. Maddie got home around 3 on Saturday. She had a tough go of it this time. Aside from the rough chemo treatment, it was a whole new experience. As Ernie mentioned the other day, she was on the 9th floor instead of the usual 6th floor, awa
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