Monday-- April 30th
Yesterday was family day at the Hospital and they put on an incredible indoor fair for the kids in the lobby. They had magic shows and dance recitals along with face painting, kite making, cookie decorating and plaster crafts. Michael had a caricature of him done and both he and Maddie got autographed cards from the Boston Red Sox mascot, Wally The Green Monster. All of the kids had a great time and William and Thomas finished up the day racing wheelchairs around the elevator banks on the 6th floor. We're not sure when Maddie will get out. Most likely Wednesday at the earliest. We have to wait for her counts to get back before they will release her. This gets harder and harder as you get down near the end. Maddie has been fortunate to have several of her friends in there as well. They've all been having a good time together so the time is passing quickly.
Michael has made his fundraising goal of $5,000 for the kids PMC ride. So far he's raised $5,500! We're so proud of him. Thank you all for your support. It's been a wonderful experience and lesson for him and us. He's going to continue to try and raise as much as he can so we'll see how he does by June 10th. For those of you in the area, if you hear of anyone that would like to help day of the kids PMC, -- steer kids, help with registration, hand out popsicles etc. -- just let our town coordinators know and they will get in touch with them. Contact information is at the following link Norfolk Kids Ride
Friday-- April 27th
We got the official word from Maddie's doctors late tonight that all of her scans came back perfect. The tumor in her hip is still shrinking and overall she is doing great. We still have more scans a week from Sunday, but we don't expect to see anything different. Unfortunately the way we found out the results of Maddie's scans was because we had to come in to the hospital for a fever she developed. Most likely we'll be here for about 5 days as her counts are still coming down. We'll gladly trade it for the scan results we received today. Thank you all for your prayers and support. We are truly blessed!
Thursday-- April 26th
Update: Great News! Preliminary results of today's scan look good. We need to wait for a second read and tomorrow's scan, but so far it looks like Maddie is continuing to make improvements!
Maddie starts her scans today. Today and tomorrow will be full days of testing. We are nervous about it. We may have some preliminary results late tonight but most likely we won't know anything for sure until late Friday or possibly even next Monday. Please say an extra prayer and think positive thoughts. We will keep you posted.
Tuesday-- April 24th
Maddie has recovered nicely from the chemo round, as far as nauseau goes. Ever since we've been IV hydrating her at home after sessions, recovery seems a little quicker. She is very tired however, and her hip has been giving her trouble again. The discomfort is coming from the area of her pelvic tumor, so we are vey anxious to have the next set of tests done this week. Thursday and Friday will be full days of testing. We may have some preliminary results Thursday evening but most likely we won't know anything for sure until late Friday or possibly even next Monday. Please say an extra prayer...
Maddie's friend, Meghan Duffy, came for a visit with her Mom, Colleen (Meghan is on the pictures page). It was so nice of them to make the trip. They timed the ride and it's only about 15 minutes, so now that the weather is getting nicer, we'll have to get together more often. The girls have even said that they want to include their dogs on these playdates...hmmm. we'll have to think about that...It was so great to see the girls together, outside of the hospital!
William started TBall last night. He looked so cute in his little orange shirt and cap. He is #6. He had NO idea what to do! He is naturally very athletic, but needed guidance as to the what to do on the field! He hit the ball and ran to the pitcher's mound! Then he tried to get his hit away from the players! It was so funny. We told him to run to 1st base. He didn't know where that was. Once he found it, he over-ran the plate and kept going!! The best was when his coach told him to "go home" as he was rounding 3rd base. That's when he REALLY looked confused! Eventually, he got the hang of it and really had a good time! Thomas had fun watching and cheering. He kept saying, "Yeah, William got a home run!" Of course, that wasn't the case!
Maddie had a nice time at the Altmeyer's next door, while I was at the game. She didn't want to sit at the field, so she stayed with them for dinner. During dinner, Paul asked Maddie if when she's had a brain xray, if they found anything in her head. Maddie replied, "They found a lot more than they would find in yours!" That's my girl!
Michael went with Ernie to the Red Sox game last night. They were given fantastic tickets from a friend, 3 rows behind the dug out. They had a blast! What a great memory for the both of them ! So far Michael has raised $3,235.00 towards his $5,000 goal. He is so excited about it. Thanks to everyone who has contributed so far. To donate to his ride click on the link https://kids.pmc.org/kids2006/?action=sponsor&EventID=140&ProfileID=SM0015
Maddie's nurse, Nikki, is coming to the house this morning for chemo and blood draws.
This weather is amazing! Enjoy!
Saturday-- April 21st
Maddie and her new port are off and running. She has had very little discomfort and is tolerating her chemo well. We were worried the effects of the chemo would be worsened because of the surgery. One of our old roommates CJ is on the floor. We haven't had a chance to visit with him yet but perhaps today. Our new roommate is Sarah. She's six and from Framingham.
Yesterday Michael and boys had a great time with Kate. They went and watched her lacrosse team and when they got home Michael set up a lemonade stand with a bunch of friends. They raised over $40.00 for Dana Farber. Click on the thermometer to see his total so far for the kids PMC. To donate to his ride click on the link https://kids.pmc.org/kids2006/?action=sponsor&EventID=140&ProfileID=SM0015 Again, thanks so much to everyone who has contributed so far. He's very proud of his efforts.
For those of you in the area, if you hear of anyone that would like to help day of the kids PMC, -- steer kids, help with registration, hand out popsicles etc. -- just let our town coordinators know and they will get in touch with them. They are also looking for riders. The ride is set for Sunday, June 10th at 5pm. Contact information is at the following link Norfolk Kids Ride
Friday-- April 20th
Quick update....Maddie's surgery went great. Her new port is in and we will give it a workout later this afternoon when her short round of chemo starts. Maddie was very nervous going in, but she woke up smiling and happy, relieved to have picc line finally gone. Michael continues to raise funds for Dana Farber. He is up to $1,920 so far!!!!
Thursday-- April 19th
Wow! Michael has already raised $1,630 for the PMC kids ride thanks to everyone's generous support. A special thanks to the efforts of our town PMC Coordinators Alison Lutes and Sharon Midura for putting this together and getting the web site up. Michael is so proud of himself. He created a pledge meter which he will update so you can watch his progress. We'll have to work on the size of the graphic, though.
Today the boys went with Maddie to Dana Farber for her treatment. It was Sibling Day. They had lots of arts and crafts and music activities for the boys as well as a pizza lunch. It was good for them to be part of it.
We have to be at the hospital at 6am tomorrow morning. Maddie has her new port being put in and then will have her short round of chemo over the weekend. She's nervous about the surgery but she's also excited to finally be rid of her picc line.
Wednesday-- April 18th
Trying to fill our days with things to do...
Took William to Target to spend his birthday gift certificates. He had so much fun picking out a game for his Nintendo DS. He's so much fun to go out with. He' so funny and entertaining. He always tells me how much he loves "William and Mommy time." It's sweet.
After dinner, Maddie and I went to see High School Musical at Steps Off Broadway, in Bellingham, with her friend Sydnie, and her Mom. We had a great time. The girls got autographs from the cast after the show and we got some cute pictures.
Michael went to work with Ernie for the day today. He was excited to go and looked so handsome all dressed up. The PMC has finally allowed him to register for his ride. He's trying to raise $5,000. To donate to his ride click on the link https://kids.pmc.org/kids2006/?action=sponsor&EventID=140&ProfileID=SM0015 We'll have more on this tomorrow.
Not much planned for today. Stay dry...
Tuesday-- April 17th
We got Maddie's counts last night. They are high enough for chemo and surgery this week.
This rain is just such a downer, especially during school vacation week. You can't go outside to play and there isn't much to do with the four kids that doesn't cost a fortune! I took them all to the movies yesterday to see Fire House Dog. Since it was a last minute decision, we didn't have time to run to the store and buy our own candy to smuggle in, for a fraction of the theater price. Instead, it cost me $50 dollars to get tickets and a snack for each kid! Can you believe it?! That's nuts! Then, of course, they have the rip off arcade right in the lobby - no way around it. Sure, kids, here's some more money to spend! What, nobody actually won a prize? Gee, what a surprise. But the extra $15 we spent trying, was so worth it, wasn't it? Now get in the car, we're going' home!
Monday-- April 16th
We had a pretty uneventful weekend. Maddie's nurse came to the house Sat. morning for chemo and a blood draw. We got a call later that afternoon telling us her platelets were still low, so we had to go into Children's Sat. night for a transfusion. Maddie's friend, Sydnie, was at the house, so Maddie asked if she could come to the hospital. She was good company for Maddie. They ate McDonald's in the bed together and played their Nintendo's to pass the time.
The nurse is coming to the house again this morning. Hopefully we won't have to go back in after we get the blood results. We're just hoping that her body is ready for chemo and surgery this week.
School vacation week. Hope you all enjoy the time off with the kids!
Friday-- April 13th
Change of plans again. Maddie's platelets are too low for chemo admission and for her surgery. Surgery with low platelets is too risky, so we're hoping to follow the same schedule for next week. Thursday pre-op, Friday surgery and weekend chemo. Although getting a week off seems like a good thing, it's really a bummer. Maddie was mentally prepared for her surgery and wanted to get it over with. Now that our schedule has changed again, it looks like our Disney trip will have to be cancelled, unless we can somehow move chemo treatments around over the next few weeks. We'll figure it out... Anyway, hope you're all staying warm and dry and we wish everyone a fun weekend!
Thursday-- April 12th
Maddie went in for pre-op this morning. We weren't sure if she would still be scheduled for surgery tomorrow to have a new port put in her chest because her platelets are still low. They think it's a go. Tomorrow morning we'll get another transfusion and then they'll know for sure. However, she did not clear for chemo this weekend because of the low platelets. She is at clinic right now receiving a platelet transfusion. She is only 1/3 of where she needs to be. We're bumbed because we just really want to stay on schedule and push forward. Don't know when she'll be ready now for her next treatment. We're hoping this doesn't mean we have to push off her Make A Wish trip to Disney. We'll see what happens.
Maddie went to school yesterday and had a great time seeing her friends and teachers. After school, she and Michael created a newspaper, printed it out, and delivered to the neighborhood, with the help of a few friends. They had a great afternoon and some of the kids came over for some good ol' mac and cheese for dinner!
Monday-- April 9th
We had a really nice weekend. Ernie and I were able to get out alone Friday night. We haven't done that in a while.
We had our Easter celebration on Saturday with our CT cousins. It was great to see everyone. Two of the cousins spent the night, along wth my parents, and Easter morning the kids had an Easter Egg hunt in the backyard, then went to church.
After everyone left on Sunday afternoon, Maddie had to go into the hospital for platelets. She was home in time for dinner, but very tired. So overall, we had an excellent Easter weekend! We hope you all did as well.
Saturday-- April 7th
It's nice to be home. It was a long 5 days in the hospital. While Maddie was in the hospital, we had a pretty busy and good week at home. William loved turning 5, and Michael had a band concert on Wednesday night. He looked so handsome all dressed up and won a red ribbon for his achievements! I was so proud watching him play his trumpet!
We are looking forward to a nice Easter weekend. We are having the CT. cousins up for the day today The kids are excited!
Happy Easter to everyone!
Thursday-- April 5th
We're home. They never did find the cause of Maddie's fever. Apparently she got one the same way everybody else does...and we're grateful for it.
Wednesday-- April 4th
We're still in the hospital and hoping they will let us out of here tomorrow. Maddie's fever is gone but her counts are still too low for them to let us go home. We have a wonderful private room in the bone marrow transplant section of the floor (6W). There are a lot of restrictions regarding visitors and walking around, but we frequent 6N --which is our usual stomping ground -- when Maddie is feeling up to it. Yesterday we had a nice visit from the Findlen's and Maddie's friend Molly came in to visit Monday evening. Last night we allso had a small birthday party for William who turned the big Five. Today Maddie was filmed playing UNO for a fundraising video for the hospital. There is a big conference and fundraiser for all the Children's Hospitals throughout the country which will be held in Boston this May. A video collage will play in the background while Elton John and other guests speak or perform. Rock on!
Sunday-- April 1st
Maddie had a great day hanging out with her friend Molly. She wasn't feeling good in the morning and we thought we were going to have to bring her into the hospital for a transfusion. However, once Molly showed up Maddie re-energized and had a good afternoon. Unfortunately she spiked a fever after dinner and we ended up bringing her into Children's anyway. Not sure when we will get out but it will probably be a couple of days at least. Despite having to come in, we were grateful we finally got to enjoy some of this nice spring weather we've been having.
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