Tuesday -- July 31st
We had a good weekend. Maddie and I got home around 8pm Friday, after a full day of testing. She did well throughout her tests, and in between one of them, we ran up to the 6th floor to visit friends. Maddie even got to see the therapy dog, Amos.
Saturday night we had dinner here with friends, and Sunday was the big Jimmy Fund Annual Family Festival. We spent the day there. The kids had a great time riding in police cars, swimming, riding kiddie rides, petting the farm animals,etc. We saw lots of our good friends and our nurse pal, Cookie, and our fellow, Simone. We were so lucky we didn't get the predicted rain storm. It held off!
Looking around the huge fields, covered with white tents and balloons, there were so many families who had come out to celebrate. This festival has been going on annually for several years. You could tell there were lots of grown up former patients, who still come back every year to celebrate, and lots of new families, like us, out there for the first time. I know we will always come back every year, as long as they invite us! What a sight...
So many courageous people. Not only the patients, but their siblings, their parents, their friends. So many people affected by this wide range of illness. Everyone was courteous and smiling, and there was such a sense of community. Everyone has their different tale, but we all share the same struggle.
One very inspirational person for me, is a young boy, Aleks. He's probably around 14 and is a patient at Children's. We were in the hospital on several occassions at the same time, and he always touched me. He's fighting one hell of a battle and he's so resilient. He wants to win so badly! He is very weak and I'll never forget the night I watched him from the hallway, sitting in his bed, desperately trying to eat a Hershey Bar. He was so weak he couldn't even open it. I cry every time I recall that. He just wanted a candy bar. Think about how many times you rip into a candy bar without having to think about it...
Anyway, I saw him yesterday, waiting in line in his wheel chair, in the brutal humidity, to get on the twirling, standing, rotating, thing. Have no idea what you call it, but you stand, strapped in around your ankles and spiral all around. You really have to balance, center your body, on this thing. Well, sure enough, Aleks' turn came and his Mom helped him up, the man running the ride strapped him in and he did it!
May sound like no big deal, but Aleks has one leg!
Everyone stopped in their tracks to watch and when his turn was done, the crowd clapped for him! He looked so proud, so happy for that moment. It was the most beautiful, amazing, example of human courage, spirit, and strength! I felt so lucky to have witnessed that. I pray he'll be back again next year...to teach us all again.
Our doctor, Simone, called yesterday with Maddie's results. It's a little confusing but I'll try to sum it up. As Simone says, Maddie's results are always hard to read, because there were so many areas of concern.
Pet Scans and Bone Scans are non specific tests. They show activity in the form of black spots, or "uptake." These black spots can be active cancer or healing/re-modeling. The ideal result, of course, would be to not show any uptake. In Maddie's case, there are no new areas of uptake. Her skull appears to be showing slightly less uptake, but other areas of concern have still not normalized, her pelvis in particular. The only way to know conclusively what each area of uptake is, they would have to go into every single one and biopsy. There are too many to do that. So, we wait. We watch her, we re-scan in a few months.
The MRI's show what's happening with the soft tissue. The swelling in her muscle at the sight of her pelvic tumor, has gone done some since April's scan. It was irritated as a result of the radiation. As the swelling goes down and she continues her physical therapy, hopefully, she will have less and less discomfort.
We will be meeting next Thursday with Simone, and hopefully there will be a plan in place for her radiation. Now there is talk of 25 days, which means Mon-Fri, for 5 weeks. We'll see. She has a bone marrow tap scheduled for that Friday.
Until next week, we're just hanging out. We're looking forward to the PMC ride this weekend and then we're off to CT. for a family reunion with my cousins.
Thursday -- July 26th
On Monday, Maddie's nurse, Erin, came to the house to do Maddie's last blood draw and give her last dose of chemo. Maddie was very excited and even let Michael push in her last saline flush. Again, mixed emotions all around. After that, she got de-accessed her for the "last" time. ...
That night, Ernie and I went out with some friends for a birthday dinner and we had a great time. Unfortunately, when we got home there was a msg. that Maddie needed platelets, and we'd have to go in the next morning for a transfusion. Maddie was upset that we had to access her port again, but it was fine.
Michael came with us for the day. While we were there he asked me, "Mom, are you still having a good birthday even though we're here?" Truthfully, I was! Michael and Maddie went for a walk out to the playroom, so I hopped into the bed and took a quick birthday nap, something I can never do at home!
At night we celebrated with a HUGE Mrs. Fields cookie cake that our sitter, Michelle, bought at the mall with William and Thomas. Thank you Michelle! We also celebrated Maddie's last GCSF shot (to build her white blood cells). When she was done, she pulled her insulflon out of her leg herself! It was exactly 11 months to the day of her diagnosis on Aug.24th, and we were done with her shots...Wow, what a year...
Yesterday was spent at the hospital for the first half of Maddie's scans. We got there at 8am and got home at 3:30. She did really well and we sailed through the tests. We even ran into some friends. Caroline and her Mom, Kelly, were there for a routine check so we sat with them for a little bit and we saw some friends from 6N down in the lobby as well.
At one point, Kelly and I were chatting a little ways off from the girls, who had sat down to chat and pretend that they didn't know us. I looked over and saw the sweetest thing. Caroline was tying the back of Maddie's little hospital gown. It was just so cute.
Maddie is meeting with Mrs. Taylor today for some tutoring and then she's excited she can finally go swimming!
Tomorrow is another big scan day. An even longer day than yesterday. We hope to have all of the results by Monday.
Monday -- July 23rd
Another milestone reached. Today Maddie officially finished the last of her chemo. She'd been following up with her at-home treatment plan and today was the last day for chemo. We are almost finished with this protocol. Tomorrow is Kristen's birthday. Maddie also starts her end-of-treatment scans. I can't think of a better birthday present!
Thursday -- July 19th
Got back to the hospital early yesterday morning to relieve Ernie, so that he could go to work. On the way in, Maddie called my cell to let me know she was going home! Wow - that was a shock!
I had a hard time saying good bye last week, to all of our friends and nurses, who have become like family. It really was an emotional time, but I truly anticipated a fever and knew we'd get one more time to see them all, which eased the first good byes.
On our last night, I slept on the window bench. I laid there looking at the sky, watching the med flight helicopter come and go. I thought back to how many times I had looked at that sky, watching the helicopter through sunrises, sunsets, rain storms, blowing leaves, and snowstorms.
Now this was it. Yesterday really was good bye. If all goes as planned, she shouldn't be an in-patient on 6N again. I got choked up again and took more silly pictures with the nurses.
I can't really explain all of the emotions. I always refer to this whole thing as a journey because that's what it is. You don't know what's around the corner and there's no end in sight, but you go forth, day by day...
I guess in some ways it's a lot like having a baby. All you Moms can understand. Life changing diagnosis - you're pregnant. Although the two diagnoses are entirely different, here's the point...Now you're under constant care, supervision, and support. You get a check up every week, you hear the heartbeat, constant reassurance. You have the baby. You've made a bond with your doctor and the nurses, then you're weened off. The visits and check ups taper off and then stop.
Not only do you miss your team, but now you're on your own. What if something's wrong? What if you're nervous or unsure? No more routine check ups in a few days for that reassurance you've come to trust. The doctor and nurses are now looking after the next patient...
That's only one way to describe it and only a piece of what the last 11 months have encompassed. The doctors and nurses truly have become a part of our family and we made the best friends on 6N. People we will always be in touch with. It was very hard leaving, knowing we won't be seeing them frequently anymore. There was a peace and comfort in our routine, seeing those faces.
On our last round, I honestly wasn't feeling as much jubilation or excitement as most people not experiencing this might think I would've or should've. I actually was consumed with anxiety, fear, sadness, and yes, some happiness. Maddie shared a lot of my same emotions and we hugged and cried. It has been a grueling time and the emotions just flowed.
On Maddie's very last night, she and I got home at 2:30 in the morning. Michael kept calling my cell phone. He snuck downstairs while Ernie was sleeping. He wanted to stay awake until we got home. He wanted to watch us come through the door because he said, then he'll know "we're done with all of this and we can have a normal life again." Michael has been dealing with a lot of emotions, as well as the two other boys, and we're all just trying to settle into our next phase of "normalcy."
Talking with other Moms who have finished their in-patient treatments as well, I realize I'm not alone in my feelings. I'm told my feelings are all normal and most parents say the same when they reach the point we're at. People ask, "Wow - are you psyched you're "done?!"" I am happy we are done with one part of our journey, but we aren't "done." I certainly don't want to sound like a downer , but friends have called and asked me to read between the lines for them, so here's the scoop:
Maddie will still do 3 weeks outpatient chemo. Two full days of intense tests next week (25th and 27th), bone marrow tap on Aug. 3rd. We will wait anxiously for all of the result data to be gathered and from there, they willl determine the next step. They would like to radiate her lungs, legs, and spine, but need to study her results to come up with the best plan. Her body has taken a beating and they are not sure how much more it can take.
Maddie will have some permanent issues as a result of all of this, that she and we will have to address one at a time.
6N seems so different already. There are new Fellows (lead doctors) and nursing students flooding the floor. There are so many new patients just now starting their journey. We got to meet them at their start and can only wonder how their journeys will end. The friends we made at the beginning of our journey have all finished on 6N as well, and we were kind of the last of that gang. All new names up on the board now, with a couple stragglers from our group. Life goes on...
I met a wonderful new Mom during the week of Maddie's last round. She stopped me in the hallway to chat and spoke about Maddie's smile and asked me questions. She looked so scared and sad, as I know I did my first week. We made a connection and it was so odd to be on the other side now, reassuring her. She asked me if I believe things happen for a reason. I told her I have to believe that or I couldn't get through this. We talked more about all the good I have seen come from all of this bad. I promised to email her a piece sent to me by our friend, Karen Reilly, that gave me peace, so we exchanged emails and went our separate ways.
When we came back with a fever, I saw her again and together we went to the Resource room to pull up the piece I told her about. It's on Maddie's website, on the May 28th entry.
Before she read it, we sat there holding hands and talking. She asked me if I cry anymore, because she always sees me as such an upbeat, smiling person. I shared with her that I cry all the time. I cry in the car, in the shower, whenever I'm alone. I shared with her the words of advice that were given to me from Missy, Chelsie's Mom, in the very beginning, words that carry me through to this day. We hugged and I left her to read. She loved the piece...
Throughout all of this, I am SO grateful for every positive and encouraging result Maddie has gotten. She has come so far. I am SO grateful for you, our family and friends, who have all remained constant and strong for us. We continue to thank you for your love and support. We could not have gotten this far without you and hope and pray you'll continue to carry us throughout the rest of our journey, whatever it may bring.
Wednesday -- July 18th
Looks like they are getting tired of us. Even though Maddie's counts aren't back up, they're letting us go home today. We can finish our antibiotics there. We'll miss our roommate Abby. She's going through a tough phase of her treatment with both chemo and radiation but she's a real trooper. There's a cute picture of her and Maddie going for a walk yesterday.
Yesterday we had a great visit with Jack and his Mom who are also from Norfolk. Jack finished up his treatment earlier this year with another type of bone cancer. They brought a nice 'Get Well' poster in for Maddie along with some cool gifts. It was great to see Jack. He looked so energetic and healthy. We also had a super visit with our friend Denise from Dana Farber. She brought Maddie a life-size stuffed dog. Everyone who's come into the room since then has done a double-take.
Looks like we'll finish up the rest of our treatments by next Wednesday. Can you belive it!!!! After that we have some scans and will figure out the radiation treatment plan going forward.
Tuesday -- July 17th
Maddie is doing pretty well, all things considered. Her counts are at 0, so she's in until they start to come up. At this point, that could take a while. That's ok though, we're having fun with another round with our friends.
We had several visitors who really brightened our day:
Our friend, Beth, brought coffee over first thing in the morning and had breakfast with us.
Our friend Nancy came by for lunch. It was lots of fun visiting with her and making plans for a knitting lesson party Thursday night!
We got a surprise visit from Rachel, who Maddie took swimming lessons with Maddie last summer, and her Mom and little brother. It was so sweet of them to stop in and visit! Thank you and we will definitely give you guys a call to get together soon!
We met a very special new friend, Katie, and her Mom and brother. Katie had Ewings in her leg several years ago and today is doing great! It was so nice of our nurse, Pam, to bring her family down to our room to meet us. When Katie was a patient, Pam and Chris were her primary nurses, just like Maddie. Katie and Maddie had fun chatting and together stuck a note on Chris' back that said, "Property of Maddie Savoie." It was great talking with her Mom and her brother about each of their own experiences with Katie's illness. Thanks for the insight and please keep in touch!
Molly came in later in the afternoon with her Mom, to spend the rest of the day hanging out with Maddie and even got to stay for dinner when her Dad agreed to come in later to pick her up. I left and Ernie took over for the night. I walked out with Molly's Mom, Terri, at the same time and I have to say...I beat her home! Clean race, but left her in my dust! Maybe next time Terri...
Michael had his first day of camp yesterday and loved it! Yeah! He'll go all this week. The boys are stil loving hanging out with Michelle while Ernie and I have to be away.
Well, that's it for now. Enjoy the day and thank you again to all of you for your continued support!
Monday -- July 16th
Sorry about the late posting. Maddie moved out of the ICU Sunday afternoon. She was extremely happy to be back in her old stomping ground on 6 North. Her counts are way down and she does have an infection so she'll be staying here for a few more days. She probably won't get home until at least Thursday.
Sunday -- July 15th
Rough night last night. Maddie didn't feel well all day and by early evening she had developed a fever of 102.7. She was complaining of severe leg pain, so Ernie went with her by ambulance to the hospital.
By the time she got there, her blood pressure was dangerously low and they couldn't get it to come up. She was given two IV lines and some medication for her blood pressure. The medicine was making her sick, so they stopped it to let her get some sleep.
Right now Maddie is in the ICU. They are keeping an eye on her and waiting for the results of her blood cultures. If a bacteria cultures out, she will most likely have to have her port removed. If there is no bacteria and her pressure stabilizes, she will be moved to the 6th floor. Either way, she is in the hospital for several days.
Please say a prayer that all will work out quickly and Maddie will be back home soon. We'll keep you posted.
Saturday -- July 14th
What would a chemo round be without a fever. We had all been holding our breath hoping to get through the weekend without incident, but this afternoon Maddie developed a fever and we ended up in the emergency room. Her blood pressure is very low and her heart rate is up. We're not sure what is causing that just yet. They are thinking we might have to spend the night in the ICU. Hopefully not. We'll have to wait and see.
Monday -- July 9th
It's done!!!! Maddie finished her last drop of hospital chemo about 7:30 pm. Kristen, Michael, Maddie and her friend Molly all watched quietly as the the last drop moved slowly down her tube and set the alarm off on her pump off signaling all was done. Maddie was so nervous her hand was shaking and then she started to cry.
She won't be able to come home until after midnight tomorrow. She has to wait 24 hours and then she'll have to get a transfusion because her counts have dropped. But once that's done we can pack up the car and head home.
For the next three weeks we'll have to follow our standard protocol treatment and medicines at home, then she'll go in for another full set of scans. We expect we'll need radiation on her lungs and spine, but it shouldn't be anywhere near what she got earlier this year.
For now we're just relieved to be at this point. There are many unknowns ahead. A number of folks are coming in for a goodby celebration tomorrow. We had a bit of a celebration tonight with Kristen's sister Jeanie and her family, Beth Hill and some of the parents and nurses on the floor. Kristen brought in enough champagne to launch an armada of ships. I'm surprised they didn't ask us to leave early. Michael, Maddie and Molly delivered cake to all the the other kids on the floor while Kristen handed out Mimosas to the parents while we waited for the last bag of chemo to finish.
One of the highlights of the evening was when Maddie insisted Michael push the button with her to start her last bag. It truly represented the ordeal we've been through as family to beat this thing.
Sunday -- July 8th
Tomorrow is the big day. Our last round of chemo in the hospital. We should start around 5pm and finish by 7pm. Then we have 24 hours of additional fluids and we should be home late Tuesday evening, ready to start a new phase of our lives... one that won't involve in-treatment chemotherapy and hopefully leads us back to normalcy.
We started off our visit in the exact same room and bed we started it out in -- 632A. Our roommates left Saturday and we've since moved over to the B side of the room, the side that belonged to Chelsie. The A side has remained empty and many of the rooms on the floor are strangely quiet - something that will surely change tomorrow, just as it always does. I think of Chelsie and Val and Megan and Caroline and Drake and CJ and Hanna and Mary and Max and Charlie and Michael and Andrea and countless other wonderful people we've met on this journey. Many of them have finished this portion of their treatments and are no longer in the hospital. We'll soon be there ourselves.
Ironically, Tuesday, the day we leave, is also the day the new Fellows start with the hospital. Our Fellow (Simone), along with all the others who have been part of our care this past year, are moving on to the second phase of their program, which is typically doing research at one of the hospitals around Children's. They'll still see us in clinic but they won't be on the floor any longer either.
Kristen, Maddie and I have all talked about it a bit over the past few days. We all have such mixed feelings about it. Fear, joy, sadness and gratitude all jumbled together in one big mess. We are truly going to miss the friends we have come to know and the nurses and doctors who watched over us these past 11 months. Words cannot express our gratitude for all they (and you) have done for us. It is a truly debt that can never be repaid. Chris, a well-composed Scotsman and one of our primary nurses, spent his last shift with us on Saturday. I had so much to tell him but when the moment finally came no words would come out of my mouth. I just didn't know what to say. I awkwardly moved to shake his hand goodbye and he just reached out and gave me a big hug. If I hadn't been standing at the nurse's station I would have probably broken down and cried. I think about that last bag of chemo hanging tomorrow and wonder if I'll be able to hold out.
Physically Maddie has done incredibly well this round, although she is anxious to get home and has been talking about it incessantly for the past 4 days. (I told her she was like Dorothy in the Wizard of Oz but she didn't have a clue as to who I was talking about.) She is taking fewer anti-nausea drugs than she ever has before but emotionally it has been full of ups and downs.
Yesterday Lauren came up from the Cape for a visit. I was glad she could make it for this last round. We also got to see Megan who was just back from a trip to Bermuda. Today Maddie had another visit with Lauren, then spent the afternoon with her best friend Molly. We were able to get Maddie unhooked for a bit and she and Molly held hands and walked all over the hospital together, giggling at everything and everyone for no apparent reason. It was good to see her like that. It will be good to finally be through all this and see her like that all the time. If you happen to be home Monday evening between 5 and 7 raise a glass of beer in the air and think of us. We'll be thinking of all of you who helped get us here, even if I'm not able to adequately express it.
Thursday -- July 5th
We start our last big round of chemo today. Maddie (and Kris and I) are both nervous and excited at the same time. Lots of mixed emotions. If all goes well we'll be home Tuesday night. After that we have 3 weeks of chemo at home and some follow on radiation. We'll know more about what to expect after her next set of scans in a couple of weeks. I finally got around to updating the site with pictures from last May onward (I guess everyone was getting tired of looking at Josh). Lots of great new ones out there so check them out....
Monday -- July2nd
The case of the missing fan.....We had a good time in CT. The high school graduation party was nice. Congrats Stephen! It was great to see everyone.
I spent the night at my brother Stephen's house. Although the a/c was on, the kids and I were hot. It was real late so we didn't want to bother Stephen or Nancy. We checked on my sister Jeanne, who was staying over in the other guest room with her two kids. Apparently, they were hot too and requested a fan earlier in the night.
Anyway, they were all "sound asleep," or so we thought. So, I unplugged her fan and as I turned to leave, she shot up and said, "What are you doing?!" "Uh...nothing?" Well, she made me plug that fan in quicker than I had unplugged it!
The whole next day, Jeanne talked about how shocked she was that I would do that to my own sister! She even called my cell phone to talk about it as we were driving home, side by side!
Well, I questioned back, why was she pretending to be sound asleep when we peaked in? Did she not want to sit up and chat with her very own sister...in the middle of the night?
Anyway, Ernie survived with the boys, or should I say they survived with Ernie? They had a great time at a fair and went out to breakfast.
Maddie's nurse is coming this morning and then she will get de-accessed. This is great because then she'll be able to go swimming.
Both Maddie and Michael have dentist appts. today. Maddie is getting a cleaning and Michael is getting a tooth pulled. "Does it hurt Mom?" "Nah. You won't feel a thing" Yikes!