Posts from November
Maddie has had a rough go of it since getting home Saturday night. She has been nauseous and has not been sleeping. Yesterday she was scheduled to start her radiation but she was so sick that they wanted to see her at clinic first. She was dehydrated and needed to be hydrated and get anti-nausea meds through her port. She still wasn't feeling great when we got home at 6:30 last night, but was able to get to bed and slept through the night. She will have to go back to clinic today for more hydration and then she will undergo her first radiation treatment. The doctors have a plan to be more proactive with Maddie and get her fluids at home with the visiting nurse for several visits after her hospital stays and to add different nauseau meds. We hope this will be the last time she is sick like this. Maddie said to me on the ride to clinic yesterday, as she was holding her little pink bucket..."Mom, I know God is listening to me because last night I said, "God, please take my pain away and I felt better for a minute."" She has her moments of despair but she's so grateful for those few minutes when she feels good. It reminds me every day of how grateful I am for the good things, the small things, and to never to take anything for granted...not even for a minute.
Maddie came home from the hospital Saturday night. She had a lot of nausea with this round again. She's now dealing with the after effects of her treatment: trouble sleeping emotional swings, nausea. She is finally asleep now. She was hoping she'd go to school, but she needs her rest. She did get to do something fun yesterday. She went with Mom, Mrs. Colotta and Molly to Build A Bear. The girls had been wanting to go for a long time and Maddie needed a "picker upper." She picked the snow leopard and named her Snow Flake. Mom tried to sneak some special outfits into a separate bag to tuck away for Christmas, but Maddie found the goods! She had a fun time dressing Snow Flake! Ernie's cousin's wife, Priscilla, arrived from N.J. on Sun. morning and will be staying until Sat. morning to help out. We start radiation tomorrow and we'll make our schedule then for the next 6 weeks. Mom had a nice time at her high school reunion and handed out Maddie bracelets. If any classmates log on to the website and look at the pictures, please note that I do NOT wear coke bottle glasses to scrub the toilet - it was a joke! We want to thank the person who left the beautiful Christmas Wreath on our doorstep! There was no card and it was such a wonderful, thoughtful gift! I guess it was time for me to take the summer flowers off the door?! Thank you!
Yesterday was quite an exciting day at Dana Farber. They had 'code red' alerts on the 15th floor and mandatory 'amber evacuations'. We were on the 3rd floor and had a great seat for all the action. Fire trucks were everywhere and a ladder truck pulled up directly below us and extended it's ladder to the service roof above our window. A couple of fire fighters waved as they climbed by. Down below there was a large crowd of nurses, doctors and other folks gawking up at us. It was almost as much fun as the Fergie visit. Of course Dad didn't bring the camera. Maddie did very good with her chemo yesterday. We finally got over to Children's about 6. Her roommate's name is Maddie and they had lots of fun playing Webkinz and confusing the nurses. She also had a nice visit with her friend Meghan, who is just down the hall, and later that night Maddie's brother and cousins called from CT. That really cheered Maddie up. This morning has been kind of rough for her. She's doing an awesome job working through the nausea. We have another round of chemo this afternoon and if all goes well hope to be home tonight.
We had a great day yesterday. Most of the day we just hung out around the house. Dad tried to get a boat engine running he'd rescued from the dump last week. No luck but the kids enjoyed watching him mutter around in the rain for several hours. The Knowles heard we were home this year and invited us over for Thanksgiving turkey. It was lots of fun, the food was terrific and it sure beat watching Dad with his boat engine in the driveway. Today Dad and Maddie are heading into Children's for another round of chemo. With luck we should be out by tomorrow night. Mom is going to her High School reunion tonight. We won't say which one it is.
Happy Thanksgiving everyone. We are truly blessed. We received the results of Maddie's tests back and are very encouraged. They believe the tumor in her skull is gone and the nodules in her lungs have cleared. They didn't expect to see that after only 4 chemo sessions. We also know from earlier tests her bone marrow has cleared. She still has the tumor in her hip (much smaller though) and there are issues with her spine, but they are very impressed with how she is responding. They weren't sure if it was the new treatment Maddie was getting, her genetic makeup or just something extra that was responsible for the postive results. We all know it is the 'something extra'...your prayers, support and love that are making the difference. Not just for Maddie but for all of us. We thank you all and wish everyone a truly joyous Thanksgiving.
Maddie's home nurse, Nikki, came earlier in the morning, so that Maddie could go to school afterwards. She was so excited to go. She had a fun day. So much fun, in fact, that she missed the bus to come home! This morning we're off to the dentist for William and Maddie to get cleanings. If the morning goes smoothly, I'll drop Maddie off at school. We are very anxious to hear some results from Maddie's tests. Hopefully it will be some time this week. Keep you posted!
We had a nice weeekend. We made this weekend our Thanksgiving weekend. It was a last minute arrangement, but our cousins Arthur and Jackie were able to come up from CT. with Aunt Teresita and Mammy. Aunt Jeanne, Uncle Dean, Charlie and Abby were able to come too. It was great! The kids were so excited. We loved seeing them laugh and just be together. We were looking forward to travelling to CT., but Maddie is checking into the hospital on Friday and it just wasn't possible this year. Thank you Teresita for making the trip! We Love you! We posted some pictures for you.
Yesterday was a long day. We got to clinic in the morning and Maddie had her routine check up with Dr. Simmone Hettmer and Dr. Grier. We got to see all of Maddie's friends! Chelsie was there for a check up! She looks fantastic and feels great! She recently got her driver's license- yeah Chelsie! Caroline and Meghan were there too! It was like a big party. We are thinking about you and praying for you today, Caroline, as you undergo your surgery. Good luck - you'll do great!!! From clinic we ran over to the hospital for a CAT scan (of course they were 1 1/2 hours late). We sat there and drew pictures. Right as they called Maddie's name, the Children's Hospital clowns were making their rounds. From there, we ran back to the clinic to get Maddie's blood results and her quick chemo treatment. We learned then that Maddie's counts are coming up except for her platelets. She will need platelets and it will be done today. Of course, we were both upset by the news, since we've been there all week and were looking forward to a day off today. It's ok, Ernie will take her in this morning and hopefully have her home at lunch time. Then, we ran back to the hospital (thank goodness the buildings are right next to each other!) for Maddie's MRI. Again, they were running about 2 hours behind. We watched Shrek and Garfield. The test was extremely long. I think Maddie went in just after 5 and didn't get out of the tube until aound 7:30pm. She was such a trooper! She did AWESOME!! I was so proud of her!!! We put a few pictures on the site to show you who we go and see. It's nice to put faces to names...
Maddie had a long night after my email. She did have a reaction to the blood transfusion so we didn't have a very restful night. We got up first thing Tues. morning to have more tests done. She did pretty well through it all, despite the fact that she wasn't feeling well. Her platelets were extremely low, way below the # at which they tranfuse, so we had to get her platelets. There was a question of getting the platelets she needed first and re-scheduling the PET scan, or doing the PET scan (takes almost 2 hours)and the platelets afterwards. The doctors couldn't guarantee 100 % that she wouldn't have a spontaneous bleed if we waited on the platelets. Although they felt the risk was low, I wasn't comfortable with that and opted to do the scan today. It was much more important and safer for her to get the platelets. They let her come home at the end of the day, even though the usual protocol for a fever is 48 hours. Maddie was visited by a magician who did amazing tricks while we waited for our discharge. It was so great to see her laughing!
OK, now today was much more upbeat! Maddie and I left the house around 8am (we were late!). We got to the radiation floor around 9:30 and got started right away. Today was the day for Maddie to get a quick CAT scan and to get her markings or tattoos. She was very nervous. When Maddie looked up from the table she was laying on, there was a butterfly poster hanging on the ceiling! It put her at ease a little bit because she has said that butterflies are her good luck sign. They marked Maddie with a marker where they would tattoo her and then by looking at her marks they were able to tattoo me in the same places first, and then they tattoed Maddie. Maddie didn't like it at all! It really wasn't too bad. Sort of just a burning needle point for a few seconds but no lasting pain. Believe it or not, I'm the first mother to ever be tattooed with their child! They must of thought it was a little coo coo, but we thought it was cool. Maddie said she was proud of me for doing it for her and of course, I was proud of her! I love our matching tattoos...
Now, it gets even better. We were a little ahead of schedule. We were due next at clinic at 11 but got there at 10:30. Good thing because right when we walked in, the Duchess of York, Sarah Ferguson, was sitting down to read a story she had written! She does a lot of work for the Ronald McDonald House and was there visiting! Can you believe it?! We sat on the floor right in front of her! She shook our hands and we introduced ourselves. She handed Maddie a little toy and two bracelets from her wrist. Her daughters had bought a bunch of bracelets in India and brought them home for their Mom to give away on her visit. They're beautiful! Next she autographed one of her books for Maddie. It truly was an amazing experience! Fergie was so warm, kind, and funny. She remembered the names of every child sitting there. There are photos on the photo page. So glad I brought my camera today! Last long day of testing tomorrow and then we're looking forward to a day off on Friday!
Maddie was scheduled to start her tests this morning. Last night she was very tired and we were worried she was on the verge of getting a fever. We checked her constantly and packed an overnight bag just in case. Her temperature was up and down all night....either that or Dad just couldn't read the thermometer. By the time she was dressed and ready to leave for her tests this morning her temperature was high enough that we had to have her taken to Children's. We fretted about calling an ambulance but eventually we agreed we should. Only one of us could drive her in and we were concerned about getting caught in rush hour traffic. Maddie was very nervous but we told her to look on the bright side...she wasn't going to have get any tests today.
It's 8:30 pm now. Maddie was given IV antibiotics when we arrived this morning and we were able to complete her scheduled tests. She has been admitted for atleast 48 hours. We are checked into our room now. There were no beds in the wing where we usually stay, so we're on the other side of the doors, in the bone marrow transplant wing. It's very quite and isolated on this side, but we took a walk "across the border" to visit our nurse friends on the other side. I guess the upside of being admitted is that we don't have to leave the house at 6:30 in the morning, to get here for our 8am testing start time tomorrow. Maddie will be getting a blood transfusion tonight. She is very nervous because she had an allergic reaction with the last one. She has been pre-medicated this time so I'm hoping all goes smoothly. Good night all.
We had a quiet weekend. Started it off on Friday (no school) with a fun time at the H.O.D. playground, while Michael was off at a friend's house. Next we went to McDonald's for lunch and then went to the far end of the grocery store parking lot to feed the birds with the stale pretzels we keep in a bag in the car for these occassions! I always have to remind the little kids not to eat them! We like feeding the birds when there's nothing else to do. We get surrounded by 30 or so birds and the kids get such a kick out of it! The weather was so beautiful. Maddie's nurse came on Saturday morning. Mammy (Kristen's Mom) came to visit for the weekend. She is going home this morning. Overall, it was a quiet weekend. Maddie is feeling ok. Having some trouble with heartburn/gastritis caused by her medication. We'll talk to the doctor more about that on Monday. This will be a long week. Maddie will be undergoing her re-staging tests. MRI's, full body scans, cat scans, etc. Full days Monday-Thursday. This is all to determine what the chemo is doing and to prepare for her radiation treatments which start on the 28th of this month. On Wed. she will be getting permanent "tattoos." They will mark, with a little black dot, where the radiation will be given. I told her I will be tattooed first, in the same spots as her, and that I'll go first. She can hold my hand and then I'll hold hers. So, we'll have matching tattoos forever. Isn't that cool? We were going to ask Dad if he'd get some too but we think he'll be too scared!
Maddie felt a little better during the day, but wasn't feeling well last night again. Hopefully, the nausea is working its way out. Fire Chief Bushnell stopped in to check on everyone after Tuesday night's fiasco. We are so lucky to live in such a warm, supportive town. I took Maddie, William and Thomas down to the fire/police station to drop off coffee and donuts for the staff. The kids got a little tour from Mr. Findlen and we even got to take a ride in the fire truck! Maddie sat up front and blew the horn! Of course, William wanted the front seat, but the back seats were cool too! I almost didn't want to say anything because I know Paul Altmeyer will have an issue with what his tax dollars are doing. Forgot to mention something very important - during Maddie's hospital stay, our nurse Pam, who lives in Norfolk, brought in a bag of beautiful cards and homemade chocolate chip cookies that Maddie's classmates and teacher had made. It was so thoughtful and it really cheered Maddie up to know that her friends were thinking about her! Thank you Mrs. Daley, kids, and Pam!
Maddie was still not feeling too great yesterday. Aside from the nausea, she got a few of the muscle cramps she experienced last cycle. Hoping they won't become consistent. She did sleep well last night though, so hopefully the nausea will start to slow down. Maddie was very upset at one point yesterday about her whole situation. We talked about things and then she said that since the start of all of this, she has been talking to God a lot more and that does make her feel better. So, we continue to talk to God and pray...home visiting nurse coming out today, meeting with a new potential babysitter, school conference, karate for the boys...crazy, crazy...
It has been a long week...Maddie came home yesterday afternoon. She had a rough time this cycle. Very little time feeling good, mostly felt sick. She is still very nauseous. The medications don't seem to be helping control it very well, but, hopefully, we'll keep tweeking her medications so that her body can adjust and handle her next round better. It's hard to see her be so uncomfortable but she hangs in there. She's my little hero. All the kids on the floor are amazing. We saw Caroline and Meghan. Maddie was not feeling well enough to hang out with the girls but it's still comforting to see familiar faces. Maddie had a nice new roommate named Carolina. She was 15 and very sweet. She had lots of words of encouragement for Maddie and even gave her a little gift and picture of herself. Aunt Michelle left on Tuesday morning. Thank you again Aunt Michelle for all of your help. You play a great hand of Old Maid! Last night was crazy. Maddie felt sick and we were just getting settled in from the week. I was on the phone with Maddie's nurse with a medicine queston when Thomas woke up with a horrible barking cough and was having trouble breathing..."Gotta go Pam! Think my 2 year old's having a problem!" He went to the hospital by ambulance and is back home with the croup. Thank you Lorraine and Janice for coming over to help us out (thanks Ed and Janice for dropping the car off to Ernie at the hospital)...we like to keep the neighborhood exciting! Let's pray for a good, quiet day today!
Thank you everyrone for keeping us in your prayers and thoughts. It's so great to know so many people are praying and thinking about Maddie and the rest of the family. Today was another long day to get through but we had a couple of good hours this morning and we were able to sneak off from the hospital to a nearby Dunkin Donuts for some hot choclate. It was wonderful to get out unhooked from the iv machine and walk outside in the fresh cool air. On the way back in we bumped into Maddie's nurse in the elevator. He didn't say anything about Maddie's hat and coat over her pajamas. Tonight Mom brought in some fresh pesto pasta and that helped Maddie's nausea so she could fall into a nice long sleep.
Saturday (night)--November 4th
Maddie hasn't been feeling very good this round. Lots of nausea. Dad brougt in some Sea Bands which work on pressure points in the wrist to relieve the nausea. They seemed to help a bit. The boys and Aunt Michelle came in for a few hours this afternoon. They had fun in the recreation room and eating in the cafeteria while Aunt Michelle and Maddie hung out and watched tv. We've been reading the guest pages and passing the time making beaded bracelets and playing tic-tac-toe. We're hoping tomorrow will be a little better.
Yesterday was quite a busy day. We arrived at Dana Farber early (thanks to Mr. Altmeyer and Kristen and Lauren...along with Mr. Altmeyer's souped up Taurus) and it was already packed. At clinic we ran into Jack and Mike, both from Norfolk, along with Caroline and Chelsea. Caroline was supposed to be admitted with Maddie but she had to postpone until Monday : ( Chelsea has completed her program (yea) and was just coming in for a checkup. In the afternoon Maddie had piano lessons with Lorie. She loves it. We didn't get over to Children's until after 6 and we were thrilled our two nurses for the night were both from Norfolk. Someone must have been watching over us because we got the window side of the room which is bigger and more private than the A side. Dad loves it too because it has a window couch he can sleep on and he doesn't have to sleep in a chair. All of the nurses here are great, but it's especially comforting when they're from home. This morning we had lots of fun reading through the guestbook before breakfast. Today we're hoping to visit with Amos...the hospital visiting dog, who's coming in around noon. Thanks for keeping us in your prayers!
Off to the races. Maddie is going in for treatment #4. It's too soon to start counting how many are left but we know it will feel good once we get to that point. The treatment cycle is about 5 or 6 days but Maddie tolerates it well so hopefully it won't be too bad. Dad is starting off the overnighters with Maddie tonight. He's timed it so he can be home on Sunday to watch the Patriots/Colts game. Mom has timed it so she can be home to watch Gray's Anatomy tonight. Good thing Aunt Michelle is here to watch the kids....
Maddie had a great day at school yesterday. She enjoyed the Halloween party and watching the movie Matilda. Not sure if she'll go today. She's worn out. Mrs. Taylor will be coming tonight. Hope everyone had a happy and safe Halloween! The kids had fun. Michael was a Ninja, Maddie was Pikachu, William was Sponge Bob, and Thomas was a fireman. We didn't get as many kids this year. The neighborhood kids are all growing up...Aunt Michelle arrives today to help out with this next long round in the hospital. Maddie goes in tomorrow and will get out Tues. or Wed.
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