Thursday -- May 31st
Maddie went to school today. It was great to see her go.
Yesterday she went to clinic for her chemo push and a blood draw. We usually go on Thursdays, but we are a little off schedule due to her port problems...
Her nurse, Annie, accessed her line no problem, but then it wouldn't draw blood! Oh No! Maddie was so stressed out and anxious. Annit put the TPA enzyme in her line and we waited the hour.
The good news is that our friend, Meghan, was there and so was Maddie Dillon, so Maddie got to see her friends and as usual, indulge in the girly giggles!
During our wait, we had to go over to the hospital to have a chest xray, to try to find why it has been giving her such a problem. Thankfully, the xray showed that everything with the port appears to be fine.
By the time we got back to clinic, Annie tried to draw blood again and it WORKED! Phew!! So, we're just not sure what the port problem is, but if we can get it working for a few more rounds, we're golden!
Maddie got her chemo push and had her blood drawn. Her blood showed that she needed red blood and platelets. Her bone marrow is so tired at the stage of the game and her body is getting slower to recover. So, we got her the platelets and we will go back on Friday for the blood. The blood bank couldn't process the order in time to do it all in one day. We were there until closing as it was.
Her counts also show that she will not be ready for this next scheduled round of chemo. This round will be pushed off for a week. She was a little upset because she really wants to finish up and that is the weekend of the Norfolk kids PMC ride (it's Sunday at 5pm). So far Michael has raised over $7,000. Hopefully Maddie will feel up to going. We're thinking she will because this chemo round will be reduced because she has already finished with one of the chemos in that round.
Monday -- May 28th -- Memorial Day!
It's Monday - Memorial Day
The weekend didn't turn out quite like we had planned. I tried to flush Maddie's port Sat. evening to make sure it was working before the nurse came out on Sun. to administer the chemo. It DIDN'T WORK!! I called our friend Pam, who is a nurse and works on the 6th floor and lives in our town. Maddie and I went over to her house. She couldn't make it work either (Pam - thank you so much for trying!!). She came by the next morning to try again and still no luck.
So, Ernie took Maddie into the hospital, and they tried numerous, treatments and nothing worked. Maddie was in a lot of pain throughout the whole ordeal and so frustrated and sad, but she got through it like a trooper. Ernie and Maddie got home after 10pm, with instructions to put a hot pack on her chest and come back so we could start again the next day.
We tried to flush her line this morning before the nurse came and again, it didn't work. Maddie was in a lot of pain and very upset. She and Ernie went back into the hospital but before they left, I offered Maddie some Holy water from Lourdes, to bless herself with.
When they got to the hospital, Maddie got an IV in her arm, so she could get her chemo and then the nurses tested her port. Amazingly it worked! As soon as they released the clamp, they got a great blood return - which is what you hope for and what hadn't been happening all along. Once they saw that her port was working, they were able to de-access her (remove the outer needle and line hanging from her chest) and send her home. We will talk to her doctor tomorrow to see where we go from here.
So, we are truly thankful to God, for His blessing and His healing.
We're home now. The kids are all with Michelle at the movies, watching Shrek the 3rd. -- the day and weekend are just about over, but we'll try to salvage the last of the sunlight when they get home.
In closing, our friend, Karen Reilly, whose son, Connor, was diagnosed with SMA (infantile ALS) at just 4-5 weeks of age, emailed me the most beautiful poem that I would like to share with all of you...
Not too long ago in Heaven there was a little soul who took wonder in observing the world. He especially enjoyed the love he saw there and often expressed this joy with God. One day however the little soul was sad, for on this day he saw suffering in the world. He approached God and sadly asked, "Why do bad things happen; why is there suffering in the world?"
God paused for a moment and replied, "Little soul, do not be sad, for the suffering you see, unlocks the love in people's hearts." The little soul was confused. "What do you mean," he asked." God replied, "Have you not noticed the goodness and love that is the offspring of that suffering? Look at how people come together, drop their differences and show their love and compassion for those who suffer. All their other motivations disappear and they become motivated by love alone."
The little soul began to understand and listened attentively as God continued, "The suffering soul unlocks the love in people's hearts much like the sun and the rain unlock the flower within the seed. I created everyone with endless love in their heart, but unfortunately most people keep it locked up and hardly share it with anyone. They are afraid to let their love shine freely, because they are afraid of being hurt. But a suffering soul unlocks that love. I tell you this - it is the greatest miracle of all. Many souls have bravely chosen to go into the world and suffer - to unlock this love - to create this miracle - for the good of all humanity."
Just then the little soul got a wonderful idea and could hardly contain himself. With his wings fluttering, bouncing up and down, the little soul excitedly replied, "I am brave; let me go! I would like to go into the world and suffer so that I can unlock the goodness and love in people's hearts! I want to create that miracle!"
God smiled and said, "You are a brave soul I know, and thus I will grant your request. But even though you are very brave you will not be able to do this alone. I have known since the beginning of time that you would ask for this and so I have carefully selected many souls to care for you on your journey. Those souls will help you create your miracle; however they will also share in your suffering. Two of these souls are most special and will care for you, help you and suffer along with you, far beyond the others. They have already chosen a name for you."
God and the brave little soul shared a smile, and then embraced. In parting, God said, "Do not forget little soul that I will be with you always. Although you have agreed to bear the pain, you will do so through my strength. And if the time should come when you feel that you have suffered enough, just say the word, think the thought, and you will be healed."
Thus at that moment the brave little soul was born into the world, and through his suffering and God's strength, he unlocked the goodness and love in people's hearts. For so many people dropped their differences and came together to show their love. Priorities became properly aligned. People gave from their hearts. Those that were always too busy found time. Many began new spiritual journeys - some regained lost faith - many came back to God. Parents hugged their children tighter. Friends and family grew closer. Old friends got together and new friendships were made. Distant family reunited, and every family spent more time together. Everyone prayed. Peace and love reigned. Lives changed forever. It was good. The world was a better place. The miracle had happened. God was pleased.
Thursday -- May 24th
We're home! They debated whether or not to keep Maddie one more night, but they let us out around 6:30. They are really having a bed shortage and they have kids spread out throughout the hospital, so I think they really needed our room. We have to go back in today for a check up.
We had some fun times again during our stay.
At night, Maddie hung out in the nursing station, airing the family's dirty laundry and making jokes. She cracked herself and the nurses up! Is nothing sacred?!
Wednesday is Treat Train day. It's a big circus looking cart that is either carrying the makings for nachos or ice cream sundaes. Yesterday was ice cream sundaes, so Maddie put some gloves on and dished out the goodies. She had a good time doing that. Of course, she followed the old rule of "One for you, two for me," as she slurped down a few gummy worms during her job!
Our friend, Molly, is in with pneumonia, so she is in our thoughts and prayers. Get better quickly Molly!
We made some new friends, Johanna and her parents. Johanna's so pretty and sweet and her parents are great. It was her Dad's birthday, so Maddie and I made some posters and got some balloons for their room. It was fun.
Ernie and our friends Beth and Sheila stopped by for lunch, so we all went out to the garden to eat and feed the birds. It was so beautiful outside. Julie, from Radiation, was outside and joined us for lunch as well. It was nice to see her again.
The clowns visited the kids in the playroom. They really are entertaining. Maddie giggled and gave them each a Maddie bracelet. We told them they were thongs and they went into a whole skit with that one! It was pretty hysterical.
Ok, time to wrap up and catch up with all of our laundry. Have a wonderful long weekend everyone!
Sunday -- May 20th
It's been a bumpy weekend for us. Yesterday Maddie's port stopped working again. You could push fluids in but you couldn't draw any out. We found out when Maddie's visiting nurse Nicki came to give Maddie her chemo. We ended up going into Children's Hospital to get it clearned and didn't get home until 1:30 in the morning. We did see a couple of our friends from Norfolk who were in...Kat, who was recovering from a staff infection she got after her she'd had her tonsils out and Madi who broke her arm and had to have surgery. Hope you guys are feeling better.
Today Maddie got a fever. We were hoping we would avoid it this time around because Maddie's counts were really strong when we left the hospital earlier in the week. Hopefully we'll only be in for a couple of days. With all the rain we're certainly not missing anything. On the humorous side...The nurse was changing Maddie's IV bag and when she pulled the cord out it made a loud popping sound. "My Mom loves that sound," Maddie said. "Why's that?" the nurse asked, quizzically. Because she says it sounds just like a cork coming out of a wine bottle," she replied.
Thursday -- May 17th
Only two more rounds of chemo left. If Maddie's schedule holds we should finish our last bag of chemo on June 25th. Yesterday Maddie's doctor, Simone, told us she is finished with her red chemo. That means her next round can be done as an outpatient. Maddie is so happy to be finished with that one. It was her first chemo and she was violently sick when they gave it to her. We are thankful they had it but glad to be done with it.
Yesterday Maddie went to school. She was so happy to see her classmates and teachers. Afterwards she rode her bike around the new road they are building near us with her friends. You wouldn't have believed this was the same girl who was in the hospital the day before.
For those of you who are looking for a worthy cause to donate to, a number of our neighbors have banded together in Maddie's name to help fight cancer. They are participating in the American Cancer Society's Relay for Life on June 15th. Their goal is to raise $1,500 and the name of their team is Maddie's Fighters. So far they have raised $635.00. We are truly grateful to be honored in this way. If you would like to make a pledge you can click here: Maddie's Fighters
Wednesday -- May 16th
We are home! We got home late last night! It was a long stay for Maddie this round. She really missed her family and friends and didn't want to be there. We made the best out of our stay...
Mother's day was nice. All of the nurses and parents of patients were wishing each other Happy Mother's Day. Maddie surprised me with a beautiful Willow Tree angel and card. Ernie brought the boys in for a visit. Michael wrote me a beautiful poem. I love it!
Maddie and I took a walk out in the hospital garden on Monday afternoon. Our nurse agreed to unhook her fluids and meds for a "quick" trip outside. Maddie and I fed the birds a bagel, sat in the warm sun and threw pennies into the fountain. It was so nice to get outside! We got "lost" and didn't get back to the room for 1 1/2 hours...oops! We snuck back up to the floor and tried to blend back in, as if we had been there the whole time. Of course, they had to speed Maddie's fluids up when we settled back in, to make up for lost time, but it was worth it!
One of the nurses, Susanne, had her last day yesterday. We were happy we got to see her off. She is leaving to have her baby and won't be back for 3 months. We'll miss her! She has been so incredibly wonderful to Maddie! Maddie made a beautiful card for all of the nurses to sign and we had a litttle party in the playroom. We'll post pictures tonight. Good luck Susanne!
Maddie is home with three days of home hydration and her usual scheduled chemo treatments with our nurse. God willing, she will not fever this round, and we won't have to go back into Boston until clinic next Thursday. Her next scheduled round is the 31st and she has another test on the 23rd.
Hope you all had a great Mother's Day!
Friday -- May 11th
Bactrum Day! Must have been all that fun at the Cape Codder, but Maddie's counts are up and we have officially started our next chemo session. We are at number three in the countdown list! We got off to a late start so we'll probably be in here until late Tuesday night or Wednesday.
Maddie got to see Caroline and Kelly at the Jimmy Fund before she came over. It was good to see them. She passed the time cutting and pasting Barbie stickers over the faces of the nurse's id badges. Wow, what a beautiful staff! We'll have to bring her over to security at MFS.
Kristen will be working the concession stand for a couple of hours at the baseball field tonight with the boys. They are SO excited. I'm sure she'll end up spending a fortune paying for all the candy that goes missing while they're in there...
Thursday -- May 10th
We had a GREAT overnighter at the Cape Codder Tues-Wed! We had missed our summer vacation, didn't do anything during school break, we aren't going to Disney until the Fall, so I thought the kids deserved a getaway. We needed a morale booster. This was it!
We picked up our babysitter, Michelle, who is home for the summer now, and off we went. We practically had the whole place to ourselves, since it was off peak season. We were the only ones in the pool...until...in walks Josh Peck!! Now, for those of you who don't know. He is the Josh from the kids show Drake and Josh - one of the kids' favorite shows!! He walked in with his Mom. I tried to be cool about it, but actually, I RAN up to Maddie to tell her and she RAN to the room to get Michael, who had gone back for a minute. He came RUNNING back to the pool. Josh got out of the pool and Michael approached him with a pad and pen and asked for his autograph. He was such a nice guy. Maddie was too shy at first, but came around and later asked him for an autograph too. We also got a picture of each of them with him. We'll post those later today. William went down the slide while Josh went down the other. HE then paddled over to me like Mr. Cool, and said , "Mom, I raced with Josh on the slide."
He had been filming a movie a few towns away and that is why he was in the hotel, of all places! I had a lovely conversation with his Mom about Maddie. She was such a sweet lady. We gave the two of them bracelets.
In addition to the highlight of Josh, the kids had a great time in the water with the lifeguards. They were so much fun and played with the kids the whole time. It was so good to see them all laughing and swimming. Of course, we gave them braclets too. Thanks guys!
I had a blast too and after all the times we've been there, I actually went down the water slides this trip with the kids! OK, I was pushed, but I'm glad I was, because they were a blast! We made trains together (broke the pool rules) and raced. It was great!
Michelle went down the slides too. BIG difference though... unlike myself, flopping around in my Granny suit, Michelle came zooming down like a Bond Girl in her white and gold bikini and flowing blonde hair!
We all went across the street to a buffet for dinner and got a surprise visit from Ernie. He couldn't take off from work to come with us, but he was able to come for dinner and take a night swim with the kids. Since the kids all wanted to ride in Dad's truck back to the hotel, I came up with a plan to sneak over to Home Goods real quick with Michelle. You know, one of those "I'm right behind ya honey! Be right there!" kind of things! Unfortunately, Michael ratted me out and we all went back to the hotel together! Maybe next time!
OK, guess I should end this novel. Have to get Maddie up and Michael off to school, then be in Boston for 9am. We're off to the clinic today to see if Maddie clears for this round of chemo. If she does, she'll be in until Tuesday. As much as we'd love to skip this round, we're hoping she's ready, so we can get it over with. Have a great day!
For those of you who are looking for a worthy cause to donate to, a number of our neighbors have banded together in Maddie's name to help fight cancer. They are participating in the American Cancer Society's Relay for Life on June 15th. Their goal is to raise $1,500 and the name of their team is Maddie's Fighters. We are truly grateful to be honored in this way. If you would like to make a pledge you can click here: Maddie's Fighters We'll be reporting out on their progress in the weeks ahead.
Tuesday -- May 8th
It has been a very busy week for us. Saturday we atteneded the PMC Pedal Partner party at Fenway Park. It was a terrific event with lots of riders and many of the Pedal Partners. Lots of friends like Valerie and Meghan (who got a special get out of free hospital pass) and Andrea and Shannon and Michael were there so it was great fun. Maddie had her face painted with a huge butterfly on it. Michael got to meet Billy Starr who started the PMC. Billy congratulated Michael on his fantastic fundraising efforts which is over $6,600 so far. We also got to meet Don Etkin who has been riding in the PMC since 2001. He is a Ewing Sarcoma survivor and a big supporter of ours. He presented Michael with his PMC riding shirt from last year.
This weekend we were honored by a number of our neighbors who have banded together in Maddie's name to help fight cancer. They are participating in the American Cancer Society's Relay for Life on June 15th. Their goal is to raise $1,500 and the name of their team is Maddie's Fighters. We are truly grateful to be honored in this way. If you would like to make a pledge you can click here: Maddie's Fighters We'll be reporting out on their progress in the weeks ahead.
Sunday Maddie had to get up at 5am to head into Children's for her final scan. We got the results back and it came back with a big thumbs up! We are so happy and feel so blessed to have gotten another positive result! Thank you for everyone's constant prayers, love and support!
After that Maddie had to get a couple of transfusions so she didn't get home until after 7pm. Nobody seemed to mind though because Maddie and Kristen had a great day visiting with friends on the floor. It was extra special because they got to be there when Maddie's friend Caroline finished her last round of chemo. They got to have pizza, ice cream and cake with Caroline, Chelsie, Val, and Meghan. What a treat! We are so excited for you and your family Caroline! We'll miss seeing you, but we'll see you "on the outside!"
Yesterday Maddie had another port malfunction. We could push fluids in but we couldn't pull any out. She had to go back into Dana Farber to get it cleared, which took most of the day. Today Kristen and the kids are all heading down to the Cape Codder Resort in Hyannis (Kennedy country...). For those that don't know, the Cape Codder Resort has a giant indoor wave pool. The kids love it. At night they light a giant bonfire and everyone gets to roast marshmellows. It should be lots of fun.
Thursday -- May 3rd
Maddie had her routine clinic visit. I took the two younger boys with us. Home Depot was in doing a project with the kids, so the boys got to make wooden step stools. Maddie's #'s look good, but she might need platelets over the weekend.
Caroline was in clinic, getting admitted for her LAST round of chemo!! We are so excited for you guys! Go Caroline!
While we waited for Maddie's blood counts to come back, we ran over to the hospital to visit our friends. Meghan was in, the same bed that was ours when we were in. She's rooming with Kelley! Both girls were sleeping when we stopped by, so we quietly left. When we got back to clinic, Val was there for a check up. She looks great! It was nice to see her and her Mom.
Maddie is hoping to go to school tomorrow. That would be good, since it's been a while.
Enjoy the beautiful weather.
Wednesday -- May 2nd
We got a great surprise yesterday morning when Maddie was told she would be getting platelets and then going home! We really expected to be in for most of the week but her numbers are coming up, so they let us out for good behavior!
We had a fun stay. Our friend Caroline was in so we hung out with her for most of the time and our new roommate, Kelley, and her Mom, Karen, were lots of fun! Drake and CJ were in too with their Moms so we really did enjoy being with our friends. We had one very special visit from out very first roomate and friend - Chelsie!!! I didn't even recognize her when she came to our door. She looks SO beautiful with her new head full of hair! She was in for some routine scans with her Dad and stopped by to visit! It was SO great to see her! Saturday we had a similar experience with Valerie who also recently finished up and stopped by to say hi to the girls. Thank you guys for taking the time to come and visit! It was so special to us! The girls love it! You both look amazing! Love Ya!
As usual, Maddie had a great time with her nurses. Cookie was on a few nights and lots of other fun nurses were in too. Maddie helped organize trays and fill the bandaid box. They like to keep Maddie busy...
Lots of fun visits from home friends. Thanks for stopping by Sheila, Beth, Molly and Terri. You made it feel like home!
Officially cancelled our trip to Disney yesterday. That's ok. We'll plan to go in the Fall, when Maddie will hopefully be done with treatment and we'll go and celebrate - no worries, just FUN FUN FUN!
We were so excited to be getting home for William's TBall game. By the time we got home, Maddie was too tired to go, but Ernie took the boys and they had fun. I was so excited to crawl into my own bed last night. The kids were all tucked in and I had just started to doze off when I felt a spider, the size of a tarantula...ok, not quite, but it sure felt like it...crawling on my neck! Yeeeeeek!!! I jumped up so fast, flicked him off, tried to nab him with a fist full of tissues, but saw him escape somewhere down the bed skirt! So, where is he?!?! I squeezed into bed with Thomas, only getting an inch of the mattress, just like at the hospital, but I was so tired it didn't matter. I don't know if I can go back to my bed until the tarantula is captured!
Tuesday -- May 1st
We continue to be amazed by your support for us. Friends, family, co-workers and children constantly remind us we are not in this alone. Yesterday Michael received a card in the mail from Katie. Katie is 6 and lives in New Jersey. Her mother is friend of Kristen's. Instead of getting gifts for her birthday, Katie asked her friends and family to donate money towards Michael's PMC ride. She raised over $360.00 and sent the checks to Michael. Her invitation read in part:
Maddie's 10 year old brother Michael is participating in a bike race called the Pan Mass Challenge (PMC). My mom says the PMC raises money that is used for both research and treatment at the Dana Faqrber Cancer Institute where Maddie and hundreds (maybe even thousands) of kids are being treated. Ninety nine cents out of every dollar raised goes directly toward research and treatment.
Michael hopes to raise $5,000 this year to help kids with cancer and I want to help him do it...Thanks for helping me help kids with cancer!
Well Katie, you and all the other folks who have donated to his ride have helped Michael do it. You've done it just as much as if you were participating in the ride yourself. To date he has raised $5,860 and we are truly thankful to you and everyone who has helped him do it! Thank you everyone!
Update: Looks like Maddie will be home today.