Saturday -- August 30th
Maddie officially has European blood in her! I thought she might wake up this morning craving tea and crumpets! I couldn't go to sleep until the marrow got safely to us. I said my rosary while Maddie slept and we waited. I was holding my breath up until the moment it arrived, praying nothing would happen to it along its journey here! Finally at 1am it arrived! You expect a big huge bag to arrive, but it was actually very small. Maddie and I both looked at each other and said, "That's it?!"
Maddie was sleeping most of the day yesterday and has been getting sick off and on, so she just wanted to get the show on the road and go back to sleep. She didn't want her picture taken, so I just took a picture of her little finger pressing the start button at 1:12am. We watched the pink colored marrow go all the way through the long tube and into Maddie. It really was emotional for me. One of our first doctors, Alli, came by to watch the start. She has come full circle with us and it was so nice of her to come and be a part of it.
I couldn't help but think of the donor as well, as I watched her gift of life and hope go into my daughter. I wished she could have been present, so I could hold her hand and say thank you. I hope to be able to meet her one day, to learn all about her. She is a part of Maddie now. It's so strangely beautiful.
We went to sleep and let the marrow flow. I'm guessing it took maybe only 1 1/2 to 2 hours to complete. There didn't seem to be any complications for Maddie during the transplant. Her vitals were closely monitored the whole time and she was pre-medicated because of her severe allergy to blood products.
It's Saturday now. Maddie didn't feel too good when she woke up. She has a very bad sore throat, a result of the chemo kicking in. The chemo will break down all of her mucus linings, from her mouth, throughout her entire digestinal tract. It can be very painful and we have started her on a morphine drip today, for better pain control.
The nausea has become pretty consistent throughout the day as well. We are trying to help with that with as much medication as we can. As Maddie's counts continue to bottom out, there will be a lot of unpleasant, difficult things to deal with, but Maddie's a fighter. When her body starts to accept the new marrow over the next few weeks, her counts should start to slowly come back up, and she will start to feel better. It is a long road but we'll get through it one day at a time.
Lauren and Kristen Altmeyer came in for an early morning, quick visit today. Maddie was so happy to see them. As always, despite her discomfort and exhaustion, she smiled her beautiful smile and made the best of her visit. As soon as they left, Maddie got sick, and has been sleeping the day away. I hope she sleeps a lot over the next several weeks, to help pass the time and to help her get through the terrible discomfort.
Maddie also had a visit from her favorite Admin in the hospital, Patti Harris. She is such a fun lady and together her and Maddie are two of a kind.
As I'm typing this, I'm just looking around the room, at all the family pictures posted on the door, at all the names signed on the window, at all the gifts given to Maddie. I am so emotionally overwhelmed with this whole picture. I painfully long for the carefree days with my family, all together and healthy and happy. For my daughter to run around and laugh, with her hair blowing in the wind, with not a care in the world. For my boys to belly laugh again, be carefree, void of fear and sadness. I ache for Maddie, I ache for my boys, I ache for Ernie. This is such a terrible thing to have to go through.
I'm just watching Maddie sleeping next to me. She is just so beautiful. I wish I could take this all on for her. I would, as any mother would. God entrusted me with this beautiful girl, 10 years ago, and with three beautiful, amazing boys. It is a privelege and a blessing to be their mother, and I pray every day for the strength and guidance to do a good job in getting us all through this. I'm looking forward to the day when we're all together again, belly laughing without a care in the world. We'll get there!
OK, it's a few hours since I typed the top half of this entry. Maddie woke up and we decided to turn on the IPOD and crank the Rascal Flatts. We stood up and danced the goofiest of dances. Then we put on our velcro gloves and tossed around the velcro ball. We got up to only 26 tosses before we dropped it. We're going to have to work on our game.
She went back to sleep. I'll go put her clothes in the hospital washing machine, so she'll have a fresh stack until I get back again, probably on Thursday.
Can't believe it's 6pm. Ernie and I will be switching out tomorrow morning. Just for the record, there has been no talk about the "new puppy." Thank God! We only had a five minute chat about it when I got here on Wed. and thankfully, I think Maddie has realized it probably won't happen. Doctors orders...not Maddie's doctors...mine!
Friday/Sat -- August 30th
Maddie had a rough afternoon yesterday. The effects of the chemotherapy are setting in. She has good moments and bad and we have been working on tweeking and finding the best nausea and pain control. She is still doing an amazing job!
We had to start the central line nutrition last night. Maddie has not been eating for two days, so it was time to get that going. We need to keep her as nutritionally strong as possible. Maddie had named her big pump "Bessie" when we first got here because it pumps everything out and is big as a cow and now the name is even more appropriate. Her nutritional suuplement is white, so it looks like milk is coming from Bessie! Maddie did not want to start the nutrition because that meant that once she did, she would not be able to be un-hooked from her lines anymore. They have to run it 24hrs. So, that was upsetting to Maddie because, naturally, she loves when she can be un-hooked from Bessie and walk around freely.
Right before we hooked her up, I asked her to go skipping down the hallway with me! She wasn't feeling well, but took my hand and got out of bed, and into the hallway we went. It was almost 10pm. I wasn't sure if I even still knew how to skip, but I got my groove back! Maddie wasn't feeling well and opted to walk, so we held hands and walked up and down the hallway a few times before they had to hook up the lines. It was an extra special walk. I cherished every minute of it...
We had a busy morning. I was walking down the hall and the staff was cleaning out an empty room. Well, it was my lucky moment. Felt like an early bird at an estate sale! They put a 4 shelf stackable shelving unit in the hall and I asked if I could have it. They said it wasn't legal, but I could have it anyway! So, I cleaned it up and dragged it into our room! Maddie thought I was nuts, but once we re-arranged the room and got everything set up, it looks awesome! Now we have so much organized storage space. Yeah, that was fun!
Next, we got paint in every color of the rainbow. We stood up in Maddie's window (her lines were just long enough so she could reach) and together we painted an awesome rainbow with a pot of gold at the end of it. Under the rainbow we decided on the word "Believe." Then we added a butterfly, stars, and a sun. It looks so pretty and cheerful. Maddie loves it. We've been told we now officially have the best room!
Maddie is sleeping now. She has been sleeping for most of the afternoon.
Maddie's new marrow is being flown here today and will arrive around 8pm. It then has to be prepared and I just got word that it will get to Maddie around midnight. This is really it now. The marrow will be hung in a bag and go into Maddie's line, just like a transfusion. It's not a surgery like some of you have thought.
Watching this new marrow, this new life, go into Maddie in the middle of the night, is going to be such an emotional moment. I'm actually hoping Maddie will sleep through it because she's very anxious about it, but if I know her, she'll be sitting up with me, watching the whole thing!
I have been doing a lot of praying while I'm sitting here, and I will be saying my rosary during the transplant. I truly believe we are being watched over and our hands are being held
Thursday -- August 28th
Below is Kristen's entry for the day. Just a quick update on the transplant. Late yesterday evening I got a call from Kristen saying a nurse told her the transplant wouldn't be until late Friday night or early Saturday morning. Nobody could explain why the sudden change in schedule or what the implications were for Maddie. After numerous frantic calls we finally got a hold of Dr. Lehman, the director of the bone marrow program at Dana Farber. Apparently there was some sort of mix-up in the paperwork. Maddie was always scheduled for Friday but the paperwork at the hospital was somehow changed to Thursday. The donor is still on schedule to give today and the marrow will be flown over to the hospital for tomorrow. It has to be treated first so we probably won't get it until late Friday night or early Saturday morning.
Took the boys to the swim club on Tuesday afternoon for a quick swim. They love it there! After we got home and had dinner, I took the three of them out to run some errands.
Our most important errand was to blow up a photo of Hope to surprise Maddie with. I had Michael help me take a good picture at the house. I first tied a sign around her neck that said "I LOVE YOU MADDIE!" It took several takes to get the perfect picture. Of course, I needed to give Hope a little haircut for the photo. Cleaned up her beard and eyebrows. We took the picture to Staples and had it enlarged to life size! It turned out so perfectly! We were so excited to get it to Maddie.
I started an antibiotic on Tuesday morning so I was able to get back in on Wed. I came in with Michael on Wednesday around lunch time. The boys stayed home with our sitter, Kate. They had fun going fishing at her lake. Michael got to stay with us until 5:30 and then took the train home with Beth Hill. It was great. The two kids had the best visit! They laughed and giggled, and even did window dances after Maddie was unhooked from her machines for a little bit.
Michael immediately presented the Hope photo to Maddie when we got to her room. She loves it! We taped it to her door so that whenever anyone comes in, we can yell, "You let the dog out!" just like at home!
We had a visit from the Brait's. They're always good for a few laughs and lots of love! Maddie made sure that everyone signed her window. Its becoming quite a work of art!
As soon as everyone left for the day, Maddie fell fast asleep for a few hours. She always amazes me at how she can find the stamina to visit and smile when people are here, regardless of how she is feeling.
Maddie had a retless night and slept in a little bit this morning. She woke up to a surprise visit from our neighbors, Stephanie and Brian, who were in town. She was so excited to see them. They too signed the window!
Jared, from The Hole In The Wall Camp, recognized Maddie's name and came by to see her. Together they made an adorable yellow and pink purse made out of colored duct tape. Jared just left and Maddie is not feeling well. Will write later...
Wednesday -- August 27th
This morning Maddie had her last bag of chemo. It felt really good to be through that part of the process, although the effects of all the chemo are actually just starting and the next few weeks will be tough as well. Tomorrow she gets engrafted with her new bone marrow. They are getting it (harvesting it is the official term they like to throw around here) from the donor today (she's somewhere in Europe) and will fly it over. Maddie will get he marrow as a blood transfusion so the process is pretty simple. Then we have to wait to see how well it takes.
Kristen takes over this morning so I'm not sure how much dog shopping Maddie will be doing. I'm sure they'll find something equally amusing to keep themselves occupied.
Tuesday -- August 26th (Breakout Day)
It was so hard leaving Maddie on Saturday when Ernie and I switched off. We had gotten our little routine down and we were doing our best to get through quarantine. It’s always so hard to leave. Maddie was very upset. I waited until I got to the car and then let it all out the whole ride home! Thank God for sunglasses at stop lights!
I raced home, took a shower, and picked the boys up at a birthday party. The hostess was gracious enough to let Thomas join in the party. William wasn’t too thrilled with that! They both ran over and gave me big hugs! What a great feeling! We came home and swam next door for a little bit, and then as it got dark, I put wood in the chimenea and the boys ate the big giant cookies I brought home from the hospital by the fire. It was fun until I walked maybe five feet away to take a phone call and turned to see they had tossed the rest of the newspaper in and it was now a raging fire! Yikes! Turned the hose on and simmered it down!
We were so excited to pick Michael up from camp Sunday morning. We left the house at 8am and got there right at 9:30. I will never forget the look on Michael’s face when he turned around and saw me! Pure, overwhelming excitement! The boys ran over and both tackled him and all three fell to the ground. It caught the attention of everyone around and we all laughed. It was priceless. He had a GREAT time at camp! I was so proud of him. He loved everything about his experience and can’t wait to go next year. It really is an extra special place.
When we got home, aside from unpacking the hospital stuff, I now was unpacking Michael’s camping stuff, and then re-packing him for a birthday sleep over at his pal Drew’s. The house looked like a tornado blew through!
After Michael got picked up for his party, the boys and I went to dinner at a friend’s house, the Reilly’s. We had such a nice night. The boys played with their boys on this huge water slide called a water tornado. They loved it! Thanks Karen and Bill for having us. We really had a great time.
I babysat for my niece and nephew yesterday so that my sister could drive Michael in to see Maddie. They had a nice visit but it was very upsetting for Michael to see her there all over again. It stirred up a lot of difficult feelings.
He was so excited to give her the gift he made her in wood shop at camp. It was a beautiful butterfly carved and painted on a wood block. He was so proud. He even won the camp award for it!
Ernie and I were supposed to switch today, but I have developed one of my chronic sinus infections. It’s not contagious, just my faulty nasal plumbing. I called the nurses on the floor and I have to be on antibiotics for 24 hrs before I can go back in, just to be safe. I have a call into my doctor right now so I can get started on them ASAP. I’ll hopefully get back into the hospital tomorrow morning. We are getting ready for the transplant on Thursday.
This past Sunday, the 24th, marked the 2nd anniversary of Maddie’s diagnosis. It’s so hard to believe it has been two years. It feels like so much longer.
In closing, I have to address the new dog issue!!! I had no idea we were “getting a new puppy” until a few friends called to confirm, after viewing our “new puppy” on the website. What?! Now I know I’ve gone a little cuckoo lately, and caved on things like mice, lizards, and fish, but I can assure you, that I will NOT cave again with another dog. We have a dog! In fact, I think our dog is half horse! How much more do you people want from me!? I’m done! Done! “ No more wire hangers!”
Okay, quick update from the hospital room. Today was breakout day and Maddie joyously took advantage of it. She spent most of the morning roaming the floor and hanging out with the nurses.
Maddie continues to do extremely well. She's supposed to be hooked up to iv for the next 3 days but has somehow managed to talk the nurses and doctors into unhooking her and letting her drink fluids instead. They are pretty strict about the protocol so that gives you an idea of her powers of persuasion.
Speaking of that, someone left Kristen a note in the mailbox about Dusty's size and temperment (rumor has it Mr. Altmeyer had something to do with it), so Maddie has decided on an alternative, something that might be more acceptable to friend and foe alike -- teacup Yorkies. Meet Rosie:
Monday -- August 25th
Kristen and I changed shifts Saturday morning. Maddie is doing very well. Perhaps the biggest challenge we've faced after the chemo is being cooped up her room. I couldn't help thinking if this were prison she would get at least an hour out of her room a day. Fortunately her friends Mary and Molly stopped by Saturday which really helped pass the time. On Sunday Maddie worked on her earring business (see photo below) and began researching another dog. She's found the cutest little miniature longhaired doxen whom she has named Dusty. I've included his photo below. Maddie just needs to get Kristen to agree to it so I'm pretty sure I know how most of the conversation will go over her next 3-day shift.
Keep us in your prayers. If you want earrings they are $5.00/pair. Maddie wants to donate the money to the 6th floor oncology resource room so they can buy a wii fit for the other kids to play with.
Dusty is looking for a good home Mom......
Maddie's business sign:
Friday -- August 22nd
Leaving again on Wed. was pretty hard. In fact, Maddie and I were an hour and a half late getting into Boston. William, Thomas, Ernie, my sister Jeanne, and cousins Charlie and Abby, were all outside when Maddie and I left. William was very upset after hugging Maddie good bye and ran into the house. We drove away beeping all the way down Park Street. Of course, we figured we were already late, so what the heck - we stopped at Friendly's for an ice cream!
When we got to clinic, Maddie had a quick check up and lab draw. She had the beginnings of a cold, so I was so nervous that she'd be sent home. Nope,we're in! Maddie's doctor, Simone, met up with us at clinic with a very special gift for Maddie. She put together a scrap book for the two of them to work on every day. They did the first page together as we sat in clinic. It's adorable and so special.
Ernie and William met us in the hospital lobby later in the evening to help us move into the room. Thomas stayed home with cousin Charlie. William came flying through the front lobby doors with his arms wide open when they arrived. So incredibly sweet! We were all able to go to the cafeteria before we got started. William loves that place. It's a food wonderland for him.
We settled in and had a few visitors. One of our nurses from 6N, Maureen, stopped by with a gift from her niece, Maddie's friend, Mary,who was just at the houst the other day for a visit. Thank you Mary! Maddie LOVES the special gift you made her! That was so thoughtful of you! Our nurse friend, "Cookie/Pam" stopped by too. We're so lucky that the nurses from 6N promised to come visit us. They're the best!
Maddie and I had to go down to xray for a sinus and chest xray before going to bed. Maddie quickly befriended the xray tech. He taught her how to process the slides and work the machine. Maddie thought that was very cool. On her last facial xray, she timed it so perfectly, and when the film was developed, there it was - Maddie had stuck her tongue out in the xray! It looked so funny. You just saw this side view of Maddie's shadowed head and a big tongue sticking out! The tech thought it was hysterical and sent that copy off to the doctors! Only Maddie!
Maddie's room has a pretty good view. It overlooks the food court across the street. We can sit and people watch and we can wave to each other if I run over there for a cup of coffee. We hung some pretty butterfly lights up around her bed and put family/friend pictures up on her doors. I would love to hang curtains with a tension rod, but Maddie said no to that idea. She said she doesn't want to make it look like home because it's not her home...
Thursday morning at 6am, they gave Maddie her first dose of chemotherapy. She was very anxious, concerned about nausea and seizures, but she is pre-medicated to help prevent both. She will get it 4 times a day, at 6am, 12 noon, 6pm, and midnight. She also gets a list full of other medications as well. She will get chemo for a week and then she will have the transplant next Thursday.
Maddie has to stay confined to her room for the first week, to make sure she didn't bring any germs/bugs, onto the floor with her. After the first week, she can leave her room, to walk around the halls and go into the playroom, but she cannot leave this wing until her counts come up, in a few weeks after transplant, to sit out in the garden.
This confinement period is tough for a ten year old girl, especially Maddie! We are doing our best to keep occupied. The nurses are all very sweet. Maddie has been logging onto Club Penguin, and playing with her friends online.
We had a few visitors Thurs. Caroline Lane and her Mom were here for a check up so they stopped by for breakfast! The girls were so happy to see each other! Beth Hill came by too. She brought Maddie a cute kitten book and a deck of Uno cards, Maddie's past time favorite.
After dinner, Lauren and Kristen Altmeyer came by for visit with their Dad. Paul and I left for a cup of coffee while the girls stayed in the room. When Paul and I were down by the food court, we looked up to Maddie's window to see Lauren and Kristen doing a window dance! It was hysterical! However, even funnier, was when we got back to the room, Paul did his own verson of a window dance for the lookers down below! Yep, that's Paul!
Simone stopped by in the evening too, to do page #2 of their scrap book. The made origami's. They came out really cute.
Maddie has been asking all of her visitors and nurses to sign her window with window paint. It looks so cute. Of course, in order to get to the window, everyone has to step all over my bed! Can't tell you how many times I've had to change my bedding!
To pass time, we have decided that Maddie will make and sell handmade beaded earrings. The shop is officially open! In fact, Beth came back later in the day with business cards she made for Maddie! Maddie named her business: Earrings of Hope! They are really beautiful beads and sterling silver. She decided on $5 a pair! Isn't that great!? She plans to buy more supplies with the $ and donate the rest when we leave here. If anyone is interested, we'll have to think of a way to get orders to Maddie. We'll keep you posted on that. In the meantime, she's got several orders to fill here today! In fact, she's working on a pair right now!
After today, we don't think Maddie will be having visitors for quite some time. Her counts will start to drop more and we can't take any chances for risk of infection.
I am going home tomorrow morning and Ernie will come in. We have decided to do three nights each. I'll hate leaving Maddie. It's always so hard. It's a routine we'll have to get used to all over again. We'll get through it. I'm excited to see the boys and pick Michael up from camp on Sunday.
Wednesday -- August 20th
Yesterday Maddie spent the day with a few of her friends. She was able to spend time with Sydney Dimond, Mary O’Connor, and the Altmeyers’, Lauren and Kristen. She had a great day and Lauren and Kristen stayed into the evening.
This morning, Lauren and Kristen came back at 7am, to sit out on the roof, outside Maddie’s bedroom window, to watch the sun. The girls made the big plan last night. The sun had already risen, but they had a blast just sitting up there. It was such a beautiful morning. We decided that when Maddie comes home, we’ll all get out there and watch the sunrise from up there again.
I’m missing Michael terribly but I’m sure he’s having a blast! He couldn’t have gotten better weather!
We have to be at the clinic at 2pm today, so we’ll leave around 1. Just finishing packing up and getting ready. Waiting for my sister to come by with the kids to say good bye.
Ernie is going to stay home while Maddie and I go in for the day because she won’t actually be admitted to her room until after her clinic visit. That could take a few hours. He’ll come in with the kids in on the train so that they can see where she’ll be, because we don’t think they’ll be visiting that often. He’ll help us get the laptop and all the technical “stuff” set up and then take the car home.
We’ll hopefully be writing tonight or at some point tomorrow.
Tuesday -- August 19th
Wow, it’s been a crazy week.
Michael had a blast at DARE camp all last week. It was great for him
I took Maddie in last Thursday and Friday for more tests and then a bone marrow aspiration at the end of the day on Friday. She did a great job getting through it all.
We were approached by several teams of doctgors at Thursdays meeting, asking us if we would participate in different studies during the transplant. Maddie decided she doesn’t want to do them. I may participate in the caregiver one, finding ways to make any improvements to help with the process.
Although emotions were running high for all of us this weekend, we filled the days with fun, friends, and lots of laughter. Uncle Mike and Aunt Priscilla even stopped in on Sunday morning on their way home from a wedding party. It was great to see them. It had been quite a while.
William tried spaghetti and loved it! It was on the 13th to be exact! Can you believe he hadn’t tried it before?! Always refused! I’m sure he must have had it as an infant, but somewhere along the line had decided he didn’t like it anymore. Now he is the Spaghetti King! He’s been asking for it just about every night. He’s got the twisting around the fork technique mastered and is great at sucking it in like a worm!
Maddie lost two teeth this past week. The darn Tooth Fairy must be real busy because she keeps forgetting to come! Maddie is running a tab though to keep her in line!
Exciting news – Michael taught me how to text message on my phone! What a big success! Now I’m really cool! Or is it way cool?
I drove Michael to The Hole In The Wall Gang Camp for sibling week yesterday. Just the two of us went in the car. He was excited, nervous, anxious. I was all of those too. It was hard watching him and Maddie hug good bye. She will be gone when he gets home. So hard to know they won’t be in the house together for a long time… Anyway, camp will probably be a great distraction for him. Good news is he got the top bunk like he wanted! Yeah! I hope he has the best week ever! We can’t talk to him so I will have to wait to hear all about it when I pick him up on Sunday!
It was really hard to say good bye once we got there…for me anyway. He was embarrassed to have anyone see me hug or kiss him so it was a real quick good bye. Once he rounded the corner, I just stood there lost and crying! Oh, so pathetic! I finally walked back to my car and pulled myself together. Just a rush of so many emotions were pouring out…
Well, this is it. We are being admitted tomorrow to begin the bone marrow transplant process.
It’s very difficult to even write about. There is so much to get done today and on top of all the work to prepare, Maddie would like to see some friends today. So, I am off to go pick up Michelle to babysit and run some errands.
I hope to be able to post an entry once we get settled into our room. We are hoping not to go in until later tomorrow afternoon, get her settled in, and then they will start the first bag of chemo at 6am Thursday.
Please keep Maddie and our family in your prayers. Your love and support continues to hold us up.
Monday -- August 11th
Looks like another rainy week ahead. I’m almost happy about that, since Maddie won’t be missing out on much swimming!
Maddie’s lab work shows that her liver enzymes are still rising. However, we’ve been told that we are going to proceed with the transplant admittance on Aug.20th. Doesn’t make a lot of sense to me, but I’m sure there will be many more discussions before we move ahead.
We will be in the hospital all day this Thursday and Friday to repeat several of Maddie’s tests, and the home nurse will come out this Wed for another blood draw. Again, anxious to get those results. So, we just chug along each day.
We had a great week/weekend. My Mom came up from CT. on Wed. night. I picked her up from the train and the two of us went out for dinner. It was so nice to sit, undisturbed, and enjoy a night out with my Mom.
Friday I dropped Hope off at the groomer, against Maddie and everyone else’s wishes. I think all dogs should get the “summer buzz” all summer long. Why do they need hair in the heat of the summer? Well, when I picked her up, you should’ve seen her tail! It looked like they left a huge cotton ball on the second half of her tail. They only shaved it half way! It looked so ridiculous, like a big wool sock hanging off the second half of her tail! The groomer had left for the night so I was going to have to bring her back in the morning. So, I brought her home and acted like I loved her tail. Maddie was so upset with me and Ernie wasn’t too pleased with it either. It was funny! I did take her back the next morning to fix it. Sheesh…
My Dad was able to come up on Sat to join us for the rest of the weekend. We had a great lobster and steak cook out and really had great conversation. It was very nice.
Michael started DARE camp this week. He was very excited to go. He’ll have a great time and it sure beats sitting around while it rains all week!
Stay dry, talk soon!
Wednesday -- August 6th
The PMC is such an incredible event. You can't but help feel inspired and motivated, even as a spectator. If you didn't attend, you should check out the video clips at www.boston.com/NECN. You'll get a great flavor for it, but being there in person is even more amazing.
Last year I was contacted by Don Etkin. Don has been riding in the PMC for 8 years. Don is a Ewing Sarcoma survivor and like so many other people, reached out to support us even though we had never previously known one another. Each year after the PMC Don sends out his "Observations" to his supporters. They are fascinating to read and I've included the previous seven years "Observations" under the link PMC to the left. This is the link to this year's post. 2008 Observations
Tuesday -- August 5th
Thursday I took Maddie to clinic. We saw our friends, the Bernards there. We love running into them!
It was a pretty quick visit. Maddie got a check up, a blood draw, and we met with Dr. Grier and Simone to chat for a few minutes and go over any questions. Maddie’s lab work looks about the same, so we’ll see what the next one shows and go from there. We learned that several of her tests will have to be repeated before re-admittance. Bummer…
This Saturday was the Pan Mass Challenge! Wow – what an event! We attended the event last year, when Maddie was the Pedal Partner for Team MFS. Watching the riders last year for the first time was so inspiring and moving. I had the big idea to ride in it this year, but of course, that never came to be. Then Ernie had intentions of riding as well, but unfortunately got side lined with Maddie’s hospital schedule. He did, however, raise several thousands of dollars for the cause! Yeah! The only one of us in the group watching last year with big aspirations, who actually saw it through, was Stephanie Knowles! She really did it! We are so proud of her for all of her hard work, amazing fund raising efforts, and dedication. Thank you so much Stephanie!
We took the kids to one of the watering holes to watch the riders come in. At this stop, we were able to see and cheer on the Duffy’s, our friends/nurses from Children’s Hospital, Heather Bellwin and the Team MFS riders. It was great! Then I took Maddie over to a different watering hole to look for Stephanie. We found her family there and got to see Stephanie and Ernie's friend Jim! We were so happy we didn’t miss them coming through.
An extra bonus at the second watering stop was that Michelle Knowles was there! She is home from Florida, with her boyfriend, Robbie, for a few weeks! It was great to see them!
It was just a really great morning. So many people, so many stories, all riding for the same cause. It’s so touching. If you ever get a chance to get out and watch it, you really should. It will truly touch your heart and maybe even inspire you to get on a bike!
Sunday afternoon, the family went up to the MacEwen’s to fish and hang out. We had a really nice time, despite the on and off again rain. You won’t believe it, but William actually got fish hooked in the thumb again. I actually thought it was a joke when he came running up to me from the lake!
Monday afternoon Michelle, Robbie, and Theresa Knowles came over to go for a swim with the kids next door. They had a lot of fun. Then I took everyone to get an ice cream. When we got back, Michelle and Robbie took William and Thomas out for a few hours. Yahoo! Thanks for the break guys!
So, that’s about it for now. Nurse coming to the house tomorrow for a blood draw, dressing and cap change. Anxious to see what the blood results show on this draw. Keep you posted.
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