Posts from September
Not so good day for Maddie. She ran up a fever and had to be taken to the hospital. She's back in Children's for a couple of days. Her blood counts are way down and she'll probably get a transfusion tonight. If everything goes okay, she'll probably come home Monday afternoon. Tomorrow our friends and neighbors are having a street long yard sale. Not sure if the rain will hold off or not, but Maddie is secretly hoping it won't so she can see everyone. The Maddie bracelets haven't come in yet either. Kristen is planning on going but she is under strict orders not to bring anything home unless it has something to do with that nice looking golf bag Mr. Altmeyer had in his garage.
Great clinic day yesterday. Ran into Chelsie and Caroline and spent time with them. Maddie's counts were up high enough so she didn't need a transfusion. Yeah! Her white blood cell count is down so this is the week when she is prone to infection and has to be careful. Maddie will be getting another bone marow biopsy on Oct.10th. She's not too happy about that. Her next hospital stay is scheduled for Oct.12th. Until then, we hope to enjoy lots of nice Fall weather.
This morning Aunt Denise left to go back home to California. We were sad to see her go. William woke up looking for his "teacher" and Thomas asked for "Ganise." Thank you Denise!
Today Ernie will take Maddie to the clinic. It will be a long day. Maddie will most likely be getting another transfusion. Her transfusion in the hospital was given throughout the night so she slept through it. There is always a chance of getting a fever and/or an allergic reaction when getting a transfusion, but she had neither with the first one, so we're hoping today's goes just as smoothly.
Ernie will probably confirm the future plans about our new routine with the home care nurse when he's there. We are SOOOO excited to only have to go into the clinic one day a week, as opposed to every Mon., Wed., and Fri. We will now be able to have some sort of normal routine and it could mean Maddie could get more time at school if she's feeling good! Speaking of school, more good news - Maddie's teacher from last year, Mrs. Taylor, has agreed to be Maddie's tutor at home! Maddie is so excited! She is really missing school and her friends, her "old life," as she puts it, so this is a bright spot for her. Thank you Mrs. Taylor!!
We were so glad to come home yesterday. Maddie hadn't been outside since last Thursday. She was excited to meet the school bus when it rolled up and surprise Michael. It was such a beautiful Fall day and we took full advantage of it. We played in the back yard, and played in the driveway. Maddie even rode her bike for the first time since this whole thing started! There's nothing better than having all of your kids playing in the yard together and laughing. Dad has to go back to work for the day today. You should see the big smile on his face...
Looks like Maddie is coming home today. Yea! She'll need another trasfusion on Thursday, but we can do that at Dana Farber. In addition, they've rearranged our schedule around at Dana Farber so we only have to go in once a week. We'll get a visiting nurse to do her Chemo at home twice a week. We're very excited all the way around!
One more day of Chemo then Maddie can come home! Because Maddie's red cell count is down she has to have a transfusion today. She is very nervous about it but we all know she'll do great.
Yesterday was a pretty quiet day. Maddie's friend Caroline went home earlier than expected. We are all anxious to finish up ourselves. Lots of arts and crafts, nail polishing and generally hanging out. Michelle and Mark took Michael ice skating and the younger boys got to go to Chuckie Cheese's. Mom, Aunt Denise and the kids also managed to find time for apple picking. Kristen took over for me late in the day and Michael and Dad got to watch the Patriots lose. I posted an article in the navigation on the left. If I could actually take the time to put together my thoughts and write them down, I think that is what I would have written. We've added a few pictures of Maddie from over the weekend as well.
Maddie was in much better spirits yesterday. She had a great time with her friend Molly then spent several hours doing Dad's nails. She said it was even more fun than fishing! After Maddie finished her Chemo in the late afternoon, she watched a movie and she and Dad ordered Chinese food (who can feel bad when you're eating Lo Mein?). Later on she hung out with two new friends, Meg and Caroline. All in all a pretty good day.
Saturday-- September 23rd
First day of Fall. I have been with Maddie since Thursday evening. Changing shifts this afternoon. Dad brought Molly in to visit with Maddie for a quick breakfast and then she'll go home with me. Maddie needed to see a friend and giggle again. Yesterday my friend Beth, stopped in to visit. It was nice to get a visitor. Soon after, we got a visit from Michelle! She flew home from Florida to see Maddie and came in with her Mom. We all had pizza together! Maddie and Michelle had lots of silly laughs together, painted their fingernails in bed, and found matching bandanas in the Resource Room. We started her chemo drip around 7pm. Very soon after, it become a different scene. Our guests left and Maddie had a very tough night. She has done a little better physically with this round, but has had a rough time emotionally.
Last night was extremely hard...emotionally draining. The drugs are probably a big part of that, but also just the overwhelming realization that there isn't a quick fix. She needed to express her fears and feelings last night and she just wants to go home. Before finally conking out around 1am, Maddie asked me to shave her hair off. The two of us had been talking about it, about beating the cancer to the punch. Maddie would get to decide when her hair fell off, not the cancer. She wanted to win this fight, but knowing emotions were raw last night, we waited until this morning. At 9:30 this morning, we put a towel on the floor and I shaved Maddie. She has a beautiful head.
Friday-- September 22nd
Maddie was very nervous about starting her 2nd Chemo treatment, but she did extremely well with the new ones used in this cycle. It didn't bother her nearly as much as the first time. In addition, she is physically stronger and in better shape than when she started out the 1st time. We can definitely see the postive impact from the first round. The lump on her head is unnoticable and the pain in her hips and back are no longer a problem.
We spent most of the day at Dana Farber getting ready, then checked in to Children's late in the afternoon. While at Dana Farber, Maddie met a new friend Caroline. She's 7. They talked quite a bit about Ipods, music and Chelsie. Caroline's room is only a few doors down so I'm sure they'll be seeing quite a bit of each other this weekend.
Today is Michael's first day of trumpet lessons. William is having a school Pride Day party.
Thursday-- September 21st
Brief clinic day yesterday, then home to hang out with Aunt Denise, whom William insists on calling 'teacher'. We are starting our next round of Chemo at Children's this morning. We hope to be home by Tuesday.
Tuesday-- September 19th
Maddie went to school for picture day and ended up staying the whole day! She had both her class photo and individual photo taken wearing her bandana, and then went the rest of the day without it! SOOOO proud of her... Some of the girls wore their bandanas for the class photo to show their support, but then decided to wear them for their own individual photos as well! What great friends!!! It was a nice day for Maddie. Off to clinic tomorrow and then check into the hospital Thursday for 5-6 days. Aunt Denise is coming in from California on the red eye, Wed. morning to help with the kids for this next round.
Monday-- September 18th
Thank you for all of your words of encouragement for Maddie today. We expected to have a long clinic day, but good news - she didn't need the blood transfusion! Yeah! Her red blood cell count came up just above the numbers needed for a transfusion. She was thrilled!
Maddie waited at the bus stop for the bus to come home after school today. Our neighbor, Molly, invited her in to play for a while. They had a great time. After a lot of debating, Maddie decided that she would like to go to school tomorrow and be a part of the class picture! Some of her friends are even going to wear pretty bandanas for the class picture along with her! You girls are awesome!
Sunday-- September 17th
Maddie had a pretty good day. I took her shopping for a comfy zip up sweatshirt to wear in the hospital. We found the perfect one. She was chilly, so she put it on in the store and walked around wearing it, dangling tag and all. She looked so cute and I was so proud of her, smiling and browsing, not an outwardly care in the world, with much of her hair gone - so pretty in pink.
Tomorrow will be a long day. Maddie will be getting a blood transfusion. Her red blood cell count is very low. She is nervous about it, but I know she'll do great. The continued love and support gets us through each day. Thank you with love - K
Saturday-- September 16th
Maddie had a great visit today from her cousins, Jackie and Arthur. Maddie and Jackie made themselves up to be animals...their usual game. Maddie was the cheetah and Jackie was the dog. Maddie really wanted her cousins to sleep over but they had to drive back to CT. Maddie's hair is really coming out now. Even though she knew it would be happening, it has still been a little tough today. You're never really prepared for this...Even after Maddie pulls a handful of hair from her head, her lips will quiver and her eyes will tear, but minutes later, she is able to smile and think about something else. She continues to be a strong spritited little girl!
Friday-- September 15th
Your support continues to pour in and we appreciate it so much. Maddie had her first full day of school yesterday. Pam and Chris did an awesome job with the class presentation on Cancer. Michael and Mom sat in on the event. We're off to clinic today and Maddie and Mom have an appointment with the boutique shop after her treatments.
Thursday-- September 14th
Yesterday afternoon Dad taught William to ride a 2 wheeler. He is training wheel free. For dinner Michael and Maddie had her favorite food -- Lobster! Maddie then had her hair cut along with her friend Molly who is donating her hair to Locks of Love. Check out the great pictures and new doos. Thanks for all your help Molly and Tammy! (Kristen's hair dresser). Maddie's counts are coming back up and she is feeling more energetic. She is going to try school today. Pam and Chris (Maddie's nurses at Children's) are doing a presentation to the class this afternoon on Cancer.
Wednesday-- September 13th
Maddie is at Dana Farber again today. Last night she took great pride in showing the boys how she can give herself a shot through the tiny port they installed in her leg. William (4) was extremely intrigued with it. We also took a tractor ride up Timberline and down the street to see the cows. Dad ran out of gas and Thomas and William helped show Dad how to fix the tractor. Mom and Maddie are going to visit the hair boutique at Dana Farber after clinic. Dad is hoping she picks out something for him as well. Dad stayed home today with Thomas and William who are having a little separation anxiety. Tammy (Kristen's hair dresser) is coming over tonight and everyone is going to be sporting a new doo tomorrow.
If you are wondering about Maddie's state of mind, check out the new link to the left entitled Thoughts in Chalk. Talk about positive thinking! I must have walked over it about 50 times before I actually took the time to read it. Thank God I did!
Monday-- September 11th
Today was our first day of clinic at Dana Farber. It went much better than expected. Lots of needles but Maddie finally knows the numbing cream we use really works. Dad offered to test it out on Sunday with her by rubbing it on his arm and letting her poke him with a needle, but for some reason he forgot about it and it never happened. Maddie is very tired and prone to infections right now. Her counts are down and we are all dutifully scrubbing in like a crack surgical team. We can barely move from room-to-room without Mom bringing out the hand sanitizer. Uncle Ned and Uncle Bill are putting together a wrist band design for Maddie. We hope to have something soon to give out to friends and supporters.
Sunday-- September 10th
Hi Everyone. Up until now, Ernie has been the one writing all of the daily entries and keeping this awesome website going on this end. I have only recently been able to sit down and get caught up. I wanted to write tonight's entry because I needed to let everyone know how incredibly grateful and blessed I feel, having family and friends like all of you. Your support, love, prayers, well wishes, and gifts, have all been overwhelming. Without all of you, this very difficult time would be unbearable. I would normally get a thank you card in the mail to all of you (for those of you who know how anal I am) , but my list is so long and my time so limited, so please accept this msg. as my thank you. Although we may not be able to personally talk with you all, we know that you are there and that Maddie is being thought of and prayed for all over the country and again, for that, we are eternally grateful.
I want to thank Ernie for being so strong for me and the kids, for researching, learning, and remembering the important facts, and for ALWAYS being positive and determined throughout this trying time. I, personally, have been an emotional train wreck, but am now gaining strength, from all of your support, and trying to be stronger for my whole family, so that we can fight and beat this together and win!
I need to thank Janice Piscitelli, our Angel, who took it upon herself to reach out to everyone for help and support, and has organized everything for us. She has been truly amazing. We feel so blessed to have her in our lives. She IS our Angel and her husband, Ed, makes pretty good meatballs..
Maddie is doing pretty well. She is tired but she is a fighter...always has been! She starts her clinic visits tomorrow at the Dana Farber. We will be there full days, Mondays, Wednesdays, and Fridays, throughout the full treatment period and then she will be admitted to the hospital on the 21st for her next round of chemo treatment.
Today was beautiful, with a hint of Fall in the air. The seasons will come and go, and so will this awful time. I pray that we will ALL be celebrating together very soon and again, I thank you from the bottom of our hearts for everything... Love Kristen
P.S. Who is this Paul Altmeyer guy?
Saturday-- September 9th
Friday-- September 8th
Home! We made it. If Maddie is up for it she may try and visit her class. It's good to have Maddie back in her own bed. Bless you all for your prayers and support.
Thursday-- September 7th
Looks like we turned the corner on things. Maddie is feeling much better. Last night we explored around the hospital and Dad snuck in a chicken nugget Happy Meal. Yummy! When we came back Maddie played a rousing game of A to Z with the resource center staff. We have Clinic at Dana Farber this afternoon. We expect to meet Dr. Grier, who is heading up the team, then back home to our own comfortable beds at home.
Update: Looks like we might be here 1 more night. Maddie has an MRI scheduled around dinner time and everyone wants to see how she does on her next does of Chemo this afternoon. On the plus side, Maddie is feeling excellent and Dad got a free cup of coffee for being nice to the psychosocial lady.
Next Update: Looks like we are going home after all. And yes, it is true Dad was nice to the psych lady, but only long enough to get his coffee.
Wednesday-- September 6th
Yesterday was the last day of Chemo. The folks at Children's and Dana Farber are unbelievable. We met Bob the volunteer last night. He used to coach at Harvard and told us about his daughter's own success story at Children's. We hope to have Maddie home today... tomorrow at the latest.
Tuesday -- September 5th
First day of school was today. Maddie didn't make it but she is thinking of all her friends and new teacher. Tihngs didn't go quite as planned, but what are plans if they can't be changed. Maddie still has one more chemo treatment before we can start to think about going home for this round. Everyone has been so supportive. Your thoughts and prayers do make a difference. We get great inspiration reading the guestbook and cards.
Monday -- September 4th
A long day. Maddie was very tired. Chelsie came to say goodby. William, Thomas, Michael and Aunt Michelle stopped in for a quick hello while Mom and Dad changed shifts. Not sure if Maddie will make it home for Tuesday and first day of school.
Sunday -- September 3rd
Started Chemo yesterday. Maddie was nervous about it but she got through it with the help of Mom and a little extra 'feel good' medicine. Her good friend Molly came to visit and later Michael, Mammy, and Pop Pop. Michael thought the resource room was cool and he made a sign to sell his Lizard. $5 of the proceeds goes towards Cancer if anyone is interested. Chelsie came to visit as well. She and Maddie picked out scarfs and tried them on. Check them out on the pics page.
Saturday -- September 2nd
Friday was another crazy day but we completed all of our baseline tests. The folks at Children's are fantastic. Today we start chemo. Michael and his friends Lauren and Kristen raised $14.45 to donate to the Jimmy Fund. Michael is going to see how much money he can raise over the next year. Maddie has a great room. She was lucky to get a single and both Maddie and Mom were able to get some extra rest. Chelsie and her Mom were our first visitors. Chelsie is a patient too and she has taken Maddie under her wing since our first visit. We love the guest book. Your support is awesome!
Friday -- September 1st
Thursday was a busy day. Didn't get home until almost 8 at night. Maddie was in the OR for most of the day getting her "Port" installed and lots of icky tests. The Port works great and now we hardly have to ever get an IV or needles again ("Yea"). We also met with the Dr.'s and walked through our treatment plan. Today is a busy day with another whole series of tests. After that we get admitted and begin our first round of Chemo. We are hopeful to be done so we can start school on Tuesday.
Michael reported a whole "truckload" of goodies arrived from our friends at MFS. When asked who they were from he said he wasn't sure but he thought it was Mrs. Fields. We have been able to take the time to look through your comments in the guest book. It's great. Keep them coming. Keep those prayers coming too! We need them.
Click to view posts from previous months: