This video was created by Infinite Love for Kids Fighting Cancer and it played at their annual Gala in New Jersey this past October (2017). It features Mia's parents, Marian and Jim, as well as Mia's oncologist, Dr. Leonard H. Wexler, MD from Memorial Sloan Kettering Cancer Center in New York.
born on June 19th, 2010 - she passed away on March 17th, 2017
Mia (right) and Caroline (Left) at the jane Ryan Den meeting - leading the school in fight song
Through a Mother's Eyes
The month of September is Childhood Cancer Awareness Month. For 30 days, those of us who have experienced Childhood Cancer attempt to use this platform for share our stories, to spread hope, to educate, and to make people aware. The gift that story telling gives is empathy. Last year, 5 months after losing her daughter Mia, Marian (Mia's Mommo) committed to tell parts of Mia's 364 battle with Rhabdomyosarcoma. Here are her posts from 2017 as they appeared on Facebook. Please take the time to read it and honor Mia, Marian, James, Jim, and everyone else that had the joy of knowing our little Pumpkin, our Mia Bird.
DAY one - posted 9.1.17
In honor of childhood cancer awareness month each day I will be sharing a picture of Mia or our family to show parts of our journey. Some of the pictures may be harder to look at than others but please share our story and ask your friends who don't know us to share our story. You don't have to share each day, just one or two that really had an impact on you. I want to make people aware of how many children are diagnosed with cancer and that it could happen to anyone. In a blink of an eye your whole life can change, your child's life can change. So for today I changed my profile picture and put a go for gold frame on. Thank you for your help 💛🎗💛 #MakeItAmazing
#misshermorethanwordscandescribe #morethan4 |
Day two - posted 9.2.17
This is a picture of Mia still sleeping after her first ever MRI. Each of her MRI's were over an hour and because of her age she was put under anesthesia each time. There were countless more after this one, but this one was the hardest for her and us. Jim and I were scared at what they would find and she was just scared to even be at the hospital. Little did we know it would become like a second home to her. We received a phone call at 9:30 on Friday night (the same day) from her doctor that there was huge mass on the left side of her cheek that went up behind her eye. At this point they still never said the word cancer but, made us an appointment with a tumor specialist at Smillow Cancer Hospital. This is how our story began. 💛🎗💛#childhoodcancerawareness #forever6 #stillcantbelievesheisgone #makeitamazing
day three - posted 9.3.17
Here she is, our baby coming home from her first biopsy. This was the day they used the word cancer. Pathology takes 7-10 days so we were still unsure at what type of cancer, but we knew our lives would be changed forever. The next day we ended up in the emergency room, and being admitted to Smilow Cancer Hospital. Mia's body did not react well to the biopsy and the left side of her face swelled so badly, she could hardly speak or see (I will never show that picture). Over the next few days Mia had another MRI, ultra sounds, CT scans, PET scans, bone scans, lumbar punctures, and spinal taps. They fast tracked her pathology and within 4 days Yale gave us the diagnosis of Alveolar Rhabdomyosarcoma (this diagnosis will change throughout her story). From there we were told she would be on a 40 week treatment plan which would include 3 different types of chemotherapy and 6 weeks of radiation. She would have surgery the following day to receive her port for easy access for chemo, antibiotics and blood draws. Our heads were spinning and all we could think of is how we are going to tell our beautiful 5 year old daughter she has cancer?
#childhoodcancerawarness #itcouldhappentoanyone #Istillcantbelieveit #MakeItAmazing #forever6 |
day four - posted 9.4.17
Here we are as a family while Mia received her first chemo treatment. This was the day after she revived her port and two days after we got her diagnosis. Mia received three different chemo therapies that day, one after the other. Her treatment schedule was more intense than I could have ever imagined. She received one chemotherapy weekly, and every 3rd treatment she would be admitted overnight because she would receive three at one time. I love this picture because it is us. We always wanted to be together and through the next year we did just that 🎗💛🎗. #childhoodcancerawareness#forever6 #greatfulforourlove #howisthisreal
Day five - posted 9.5.17
For those of you who have children, remember the way you felt when you brought your newborn home for the first time? That is the way we felt, times ten when we brought Mia home from the hospital after she was diagnosed. We were exhausted, scared, confused, and not sure what the hell we were going to do. We were told we could no longer go to the mall, restaurants, the grocery store or any other place that was an in-closed public space. This was extremely hard for us because we did everything together as a family. The only place Mia went in public was to school. I know what you are thinking, that is probably the one place she could catch the slightest cold, but we wanted her to be as normal as a kindergartner could be. We were also told to no longer wear shoes in our house and make sure when we, or anyone else came over they were not sick and washed their hands as they walked in. We had hand sanitizer dispensers installed in our house and were less than ready to fight this awful disease with our daughter. #childhoodcancerawareness #gogold #itcanhappentoyourchild
#stillcantbelievesheisgone #forever6 #MakeItAmazing |
day six - posted 9.6.17
I'm not going to lie, I don't remember whose idea it was to dye Mia's hair, hers or Jim's? One thing I do know, it was something she wanted to do since she was around four. We figured there were so many thing she would have no control over and why not let her do this before it all fell out. So one night when I was at class Jim had a friend come over and they dyed her hair pink and blue. It's funny because I look back at pictures and it just fits who she was. It didn't look funny or out of place, it was like she was always meant to have pink and blue hair. She was beautiful and wore that amazing smile because she was so happy.
#iwoulddoanythingtoseethatsmileagain #childhoodcancerawareness #forever6
#MakeItAmazing
#iwoulddoanythingtoseethatsmileagain #childhoodcancerawareness #forever6
#MakeItAmazing
Day seven - posted 9.7.17
About two weeks after Mia received her first chemo treatment her hair started to fall out. One morning we woke up and we just new it was time to cut it all off. You see, at first the hair started to fall out in clumps and just looked really thin, but then all of a sudden half of hair was truly dead. It was all matted in the back and there was no way we were going to try and brush it.
Jim being the amazing dad he is, let Mia shave his head for the second time that month and, set up all of the hats we bought or received as gifts and told her we would have a fashion show afterwards. As parents we new loosing her hair would be the moment people would look at her know she was sick, they would know she had cancer. It's not as if you want to hide that your child is sick but people look at you differently and we weren't ready for that. See the smile on her face? That is why she was so amazing. She embraced every obstacle with the most positive attitude. She was the one who gave us the strength to smile even on the worst of days. 🎗💛🎗 #childhoodcancerawareness #iwishsheeashere #forever6 #gogold #kidsgetcancertoo #MakeItAmazing |
day eight - posted 9.8.17
Just because our lives changed drastically and stopped us in our tracks, didn't mean the rest of the world did. We were lucky to celebrate the birth of a new baby in the family. Jim's younger sister Meg had baby Brandon, and no one was more excited than this beautiful girl. For those of you who didn't know Mia, she LOVED babies and children, and she was good with them. This is one of the many traits she passed down to James. Watching him interact with young babies brings tears to my eyes because I can see her in him, and it is beautiful. It breaks my heart that she will never have the chance to be a mother because she would have been the best. 🎗💛🎗#childhoodcancerawareness #wishshewashere #itcanhappentoyourchild#forever6
#gogold #MakeItAmazing
#gogold #MakeItAmazing
day nine - posted 9.9.17
Our first trip to Sloan Kettering in NYC was more than overwhelming. The drive was long and we once again were scared what we would hear from more doctors. We went to meet with another oncologist to get a second opinion and meet with a special pediatric radiologist.
Sloan was a totally different world than Yale. It is an enormous hospital dedicated to treating patients who have, once had, or are at high risk of having cancer. We walked in and made our way up to the pediatric floor. Yes, a whole floor just for children who have cancer. I couldn't believe how many children there were at this hospital. Mia had only been in treatment for a month, and in my eyes pediatric cancer was still somewhat rare. As soon as that elevator opened, I realized it is not.
After meeting with people about insurance and parking we made our way to meet Dr. Wexler. We introduced ourselves he asked Mia some questions, quickly examined her and then took her hand and walked her to the playroom so we could talk in private. He came back and started talking to us about Mia's cancer. Immediately he told us that they have a different diagnosis than Yale. He told us Mia had parameningeal rhabdomyosarcoma not alveolar rhabdomyosarcoma. He gave us an article and explanations on why their diagnosis was the correct one. So again our heads were spinning. Who do we believe? What do we do?
Dr. Wexler was amazing and told us we are doing everything right and told us it was ok to stay at Yale because our oncologist there was doing chemo that was appropriate for her. (He would have done a little differently but it was appropriate). He went on to tell us that because of where Mia's tumor was located and because of her type of cancer radiation was crucial in her treatment. So he sent us to the second floor across this huge hospital to meet with who would become Mia's radiologist. 💛🎗💛#childhoodcancerawareness #cantbelievesheisgone #forever6#MakeItAmazing #gogold
Sloan was a totally different world than Yale. It is an enormous hospital dedicated to treating patients who have, once had, or are at high risk of having cancer. We walked in and made our way up to the pediatric floor. Yes, a whole floor just for children who have cancer. I couldn't believe how many children there were at this hospital. Mia had only been in treatment for a month, and in my eyes pediatric cancer was still somewhat rare. As soon as that elevator opened, I realized it is not.
After meeting with people about insurance and parking we made our way to meet Dr. Wexler. We introduced ourselves he asked Mia some questions, quickly examined her and then took her hand and walked her to the playroom so we could talk in private. He came back and started talking to us about Mia's cancer. Immediately he told us that they have a different diagnosis than Yale. He told us Mia had parameningeal rhabdomyosarcoma not alveolar rhabdomyosarcoma. He gave us an article and explanations on why their diagnosis was the correct one. So again our heads were spinning. Who do we believe? What do we do?
Dr. Wexler was amazing and told us we are doing everything right and told us it was ok to stay at Yale because our oncologist there was doing chemo that was appropriate for her. (He would have done a little differently but it was appropriate). He went on to tell us that because of where Mia's tumor was located and because of her type of cancer radiation was crucial in her treatment. So he sent us to the second floor across this huge hospital to meet with who would become Mia's radiologist. 💛🎗💛#childhoodcancerawareness #cantbelievesheisgone #forever6#MakeItAmazing #gogold
Day ten - posted 9.10.17
So now, here we are waiting to meet Mia's radiologist. Our heads were still spinning from the news Dr. Wexler gave us and now, we are meeting with another Dr. to tell us why proton radiation is better than photon radiation. Did you know there are two different types of radiation? Neither did we before all this happened.
I remember Dr. Wolden walking into the room and liking her immediately. Her presence and the way she spoke to us including Mia was so kind and genuine. The way she explained the difference between the two types of radiation really helped us to understand why proton is better than photon. She explained to us that the theorical advantage to proton beam was that the beam could be stopped at the end of the tumor so there would be less exposure to her brain, her eye and pituitary gland. She has had great success with children with rhabdomyosarcoma and getting rid of their cancer (that is just a quick explanation).
To us this was a no brainer but there were still many side effects that could potentially happen to our little girl. We were told her glands could make to much saliva or not enough, her face would be burned on the inside and outside of her cheek, her bones may not grow on the side she received the radiation and may look different as she grows up, her teeth may fall out where she received radiation, and a laundry list of more side effects that would effect her throughout her life. We were in shock because this was supposed to be the better of the two radiations. Oh one more thing, there were only two beams in the northeast. One in NJ and one in Boston. So now another decision had to made, do we move for six weeks for her to receive the better radiation? You bet your ass we do! That is the day we decided to move the NJ for the summer. Only the best for our girl. 🎗💛🎗#childhoodcancerawareness #itcanhappentoyourchild #wishshewasstillhere#forever6
#MakeItAmazing
I remember Dr. Wolden walking into the room and liking her immediately. Her presence and the way she spoke to us including Mia was so kind and genuine. The way she explained the difference between the two types of radiation really helped us to understand why proton is better than photon. She explained to us that the theorical advantage to proton beam was that the beam could be stopped at the end of the tumor so there would be less exposure to her brain, her eye and pituitary gland. She has had great success with children with rhabdomyosarcoma and getting rid of their cancer (that is just a quick explanation).
To us this was a no brainer but there were still many side effects that could potentially happen to our little girl. We were told her glands could make to much saliva or not enough, her face would be burned on the inside and outside of her cheek, her bones may not grow on the side she received the radiation and may look different as she grows up, her teeth may fall out where she received radiation, and a laundry list of more side effects that would effect her throughout her life. We were in shock because this was supposed to be the better of the two radiations. Oh one more thing, there were only two beams in the northeast. One in NJ and one in Boston. So now another decision had to made, do we move for six weeks for her to receive the better radiation? You bet your ass we do! That is the day we decided to move the NJ for the summer. Only the best for our girl. 🎗💛🎗#childhoodcancerawareness #itcanhappentoyourchild #wishshewasstillhere#forever6
#MakeItAmazing
day eleven - posted 9.11.17
The next couple of months before we moved to NJ became like routine to us. Every Tuesday Mia would go to clinic in Trumbull and receive her weekly chemo and every third Tuesday we made our way to Smillow for Mia's three different chemos to spend the night.
Me saying it became routine makes it sound like it was easy, but I assure it was anything but. I had to stop working completely, Jim had to take days off because he wanted to be with her, James would go and see his sister hooked up to machines when he would come and visit her, and that was just what was happening with us. Watching Mia be accessed with a needles into her chest (that is where her port was located) was awful. She didn't like it and each time she would sit in my lap so I could hold her arms and feet so she wouldn't hurt herself or the nurses. They put a clear sticky tape over the needles to keep them in place, but when they took it off Mia would scream in agony. She hated the tape more than being accessed and it would sometimes take up to an hour to get it off. She had to get her blood taken at least 2x per week to check her counts and we had the constant worry that Mia would catch a cold and get a fever, which usually meant a hospital stay or more pokes in her port at the least. You will always hear me say that we were lucky at this time because with all the chemo that she had, all the needles, all of our worry, she was able to be a normal kid when she was at home. She was able to go to school, play with James in our yard, go to soccer and to dance class. She didn't let cancer define who she was or slow her down and I will forever love her for that. 💛🎗💛#childhoodcancerawareness #gogold #itcanhappentoyourchild #forever6 #MakeItAmazing |
Day twelve - posted 9.12.17
Here they are Mia and Caroline, together getting ready to finish the final mile for their school marathon. See for those of you who don't know, Caroline was diagnosed with cancer in September, while Mia was diagnosed in March. Two different types of cancer but these two were in the same kindergarten class. Yes, you read that right, the same class. People say childhood cancer is rare but it's not. In our town alone there have been more than nine cases in the last 3 or 4 years. Does that sound rare to you?
Caroline's family doesn't know this but they were a blessing to us. They answered questions we had, gave us the insights on the doctors and hospital, gave us ideas on how to get Mia to take her meds, listened to us cry, and of course Caroline gave Mia strength. The two of them together were just amazing on how confident they were together. The day Mia was diagnosed, they became family.
Parents celebrate being told their child has no more evidence of disease because their child has just been through hell for over a year, but believe me, you are holding your breath, praying this horrible disease doesn't find its way back to your baby. Something people don't understand is there are so many side effects to chemo therapy that as a parent you will be worried forever. Did you know chemotherapy can cause different types of cancers like leukemia? This is only one of the many lifelong side effects chemotherapy has on your body, the list is to long for me to even write them. Don't even get me started in the side effects of radiation.
My point being we need to do something better for our children. They deserve more! They deserve a chance to be children and become adults, and 20% of children diagnosed won't be able to.
#childhoodcancerawareness #morethan4 #itcanhappentoyourchild #foreverfriends
#forever6 #MakeItAmazing
Caroline's family doesn't know this but they were a blessing to us. They answered questions we had, gave us the insights on the doctors and hospital, gave us ideas on how to get Mia to take her meds, listened to us cry, and of course Caroline gave Mia strength. The two of them together were just amazing on how confident they were together. The day Mia was diagnosed, they became family.
Parents celebrate being told their child has no more evidence of disease because their child has just been through hell for over a year, but believe me, you are holding your breath, praying this horrible disease doesn't find its way back to your baby. Something people don't understand is there are so many side effects to chemo therapy that as a parent you will be worried forever. Did you know chemotherapy can cause different types of cancers like leukemia? This is only one of the many lifelong side effects chemotherapy has on your body, the list is to long for me to even write them. Don't even get me started in the side effects of radiation.
My point being we need to do something better for our children. They deserve more! They deserve a chance to be children and become adults, and 20% of children diagnosed won't be able to.
#childhoodcancerawareness #morethan4 #itcanhappentoyourchild #foreverfriends
#forever6 #MakeItAmazing
day thirteen - posted 9.13.17
Our first trip to Pro-Cure in NJ was about 2 weeks before Mia started radiation. We were told that they needed to make a mask that would fit over her face and neck to help keep her still and make sure they radiate in the exact spot they need to. Again, because of her age and where the tumor was located they suggested Mia go under anesthesia for the duration of the her treatment. So everyday for six weeks Mia was put to sleep.
After we left Pro-Cure we made our way to very small hospital to meet another oncologist who would administer her chemo while we were living there. A full day for this little girl and not one complaint, although she was very happy to come home at the end of the day. She amazed me everyday. 🎗💛🎗#childhoodcancerawareness #wishshewashere #itcanhappentoyourchild #forever6
#MakeItAmazing
After we left Pro-Cure we made our way to very small hospital to meet another oncologist who would administer her chemo while we were living there. A full day for this little girl and not one complaint, although she was very happy to come home at the end of the day. She amazed me everyday. 🎗💛🎗#childhoodcancerawareness #wishshewashere #itcanhappentoyourchild #forever6
#MakeItAmazing
day fourteen - posted 9.14.17
The week before Mia's 6th birthday we threw her a birthday party with all the kids in her class. It was a great party and was truly a day we pretended Mia wasn't sick, she was just a little girl celebrating her birthday with her friends. You see on Mia's actual birthday, we packed up the car and moved to NJ for her 6 weeks of radiation. We got to our hotel, moved in, and broke the rules and took Mia and James out to dinner. That was the first time we had been out to dinner in 3 months and she LOVED it.
Our hotel was fine but as the week went on it started becoming more of a party hotel, than anything else and it wasn't as clean as we hoped. People would rent out a bunch of rooms so they could have a party in the pool area and more than once they had to close the pool because the chemical were not right because of the amount of people in the pool. If we were there for vacation it would have been a different story but we had done everything in our power to keep Mia "healthy" and it really was not the right place for us, to many people coming in and out. So Jim and I drove to an apartment/condo complex down the street that had short term renting, told them our situation and within a week we moved again but this time into an apartment. We stayed there for the next 4 week and we were more than grateful and will forever love all the people who worked there. 🎗💛🎗 #childhoodcancerawareness #wishshehada7thbirthday #forever6
#itcanhappentoyourchild #gogold #MakeItAmazing
Our hotel was fine but as the week went on it started becoming more of a party hotel, than anything else and it wasn't as clean as we hoped. People would rent out a bunch of rooms so they could have a party in the pool area and more than once they had to close the pool because the chemical were not right because of the amount of people in the pool. If we were there for vacation it would have been a different story but we had done everything in our power to keep Mia "healthy" and it really was not the right place for us, to many people coming in and out. So Jim and I drove to an apartment/condo complex down the street that had short term renting, told them our situation and within a week we moved again but this time into an apartment. We stayed there for the next 4 week and we were more than grateful and will forever love all the people who worked there. 🎗💛🎗 #childhoodcancerawareness #wishshehada7thbirthday #forever6
#itcanhappentoyourchild #gogold #MakeItAmazing
day fifteen - posted 9.15.17
Our time in New Jersey was hard. Mia had radiation everyday for six weeks plus her two bigger rounds of chemo which required hospital stays, but just like at home we had a routine. We all would wake up early so we could tell one another goodbye, and then Mia and I would go to Pro-Cure. Her treatments usually took about an hour from start to finish. Radiation itself is only 10-15 minutes but because she was under anesthesia they had to make sure she was OK when she woke up. While we were there Jim and James would usually go for run and have breakfast. After we would come home Mia would usually be tired for a few hours and we would just hang out, and as she started to feel better we would find something to do outside. Even if it was just go stick our feet in the pool.
You see Mia was not allowed to go swimming during the week because she was accessed. They kept the needle and her tubes in to make it easier to put her to sleep everyday. As time went on Mia's face started to become more burned from the beam. We were also told that the inside of her mouth would be burned too. She would have mouth sores and probably would not eat that much because they are so painful. They were right, Mia did have mouth sores but she never complained. She would just say the ketchup or whatever food it was she was eating was spicy and wouldn't eat it. The doctors and nurses were in awe of her. She didn't t complain about the inside or the outside of her face. I mean look at her face, how did she not complain?? She is stronger than I will ever be.
Jersey wasn't all bad though, we were there as a family and we did get to go to the shore for the weekend thanks to a very generous family that let us stay at their beach house. We got to do Mia and James' favorite things like build sand castles, jump over waves, and just be on the beach. We did everything we could make those six weeks as fun as possible for all of us.
#childhoodcancerawareness #missherstrength #itcanhappentoyourchild #forever6
#MakeItAmazing
You see Mia was not allowed to go swimming during the week because she was accessed. They kept the needle and her tubes in to make it easier to put her to sleep everyday. As time went on Mia's face started to become more burned from the beam. We were also told that the inside of her mouth would be burned too. She would have mouth sores and probably would not eat that much because they are so painful. They were right, Mia did have mouth sores but she never complained. She would just say the ketchup or whatever food it was she was eating was spicy and wouldn't eat it. The doctors and nurses were in awe of her. She didn't t complain about the inside or the outside of her face. I mean look at her face, how did she not complain?? She is stronger than I will ever be.
Jersey wasn't all bad though, we were there as a family and we did get to go to the shore for the weekend thanks to a very generous family that let us stay at their beach house. We got to do Mia and James' favorite things like build sand castles, jump over waves, and just be on the beach. We did everything we could make those six weeks as fun as possible for all of us.
#childhoodcancerawareness #missherstrength #itcanhappentoyourchild #forever6
#MakeItAmazing
day sixteen - posted 9.16.17
Radiation was over we were able to enjoy a little summer and the warmer weather in September from our own home. The hospital told us Mia would be scanned in six weeks to see how the radiation worked on her tumor. We were scared to wait that long but that is what they do, and honestly in my mind radiation was going to get rid of the tumor no problem. Mia was still going to her weekly treatments but unfortunately she was used to it.
For some strange reason her hair started to grow back and we would call her "our baby chick" because honestly that is what she looked like. This was one of the hardest parts of being home. People just assumed she was off chemotherapy because it was growing back and the truth was she was not even half way done. Actually, it was during those two months that Mia had her first set back. One week her counts were to low to receive a big round of chemo and it moved everything back one week. We were very taken back and upset because we really thought she would be finished by Christmas and now it would be New Years. In the grand scheme of things was it a big deal, no, but when you have something in your mind and you want your child to stop getting poison put their body, it becomes a big deal.
It was not all chemotherapy and hospitals though. We found time to do many great things in those two months. We went swimming, went on bike rides, we went to soccer, Mia acted in her first music video, she started First grade, we went to go see Racheal Platten, Mia had a friend come over, and most importantly we did all of this as a family. We were together and happy to be home. Then October came... 🎗💛🎗 #chilhoodcancerawareness #itcanhappentoyourchild #misshermoreveryday #forever6
For some strange reason her hair started to grow back and we would call her "our baby chick" because honestly that is what she looked like. This was one of the hardest parts of being home. People just assumed she was off chemotherapy because it was growing back and the truth was she was not even half way done. Actually, it was during those two months that Mia had her first set back. One week her counts were to low to receive a big round of chemo and it moved everything back one week. We were very taken back and upset because we really thought she would be finished by Christmas and now it would be New Years. In the grand scheme of things was it a big deal, no, but when you have something in your mind and you want your child to stop getting poison put their body, it becomes a big deal.
It was not all chemotherapy and hospitals though. We found time to do many great things in those two months. We went swimming, went on bike rides, we went to soccer, Mia acted in her first music video, she started First grade, we went to go see Racheal Platten, Mia had a friend come over, and most importantly we did all of this as a family. We were together and happy to be home. Then October came... 🎗💛🎗 #chilhoodcancerawareness #itcanhappentoyourchild #misshermoreveryday #forever6
Day seventeen - 9.17.17
Six Months ago today we were in a hospital holding Mia's hands saying our final goodbyes to our baby girl while she gained her wings. We miss her more than we can put into words. She was our light and our strength and now she is gone.
Like many other families that have lost their children to cancer, this is how we visit our daughter. James is so comfortable here which I love but it also breaks my heart because he is so young. We can no longer hear her singing or laughter throughout our house. We can't see her running and dancing in our backyard. We only see her in our minds and in pictures and videos.
Mia along with all the other children who are fighting or who have fought deserve better treatments and funding. Children are more affected by cancer than you would think. 43 children are diagnosed with some form of cancer each day. I think that sounds like a lot don't you? 🎗💛🎗#childhoodcancerawareness #fastestandslowest6months #cantbelievesheisgone #forever6#MakeItAmazing
Like many other families that have lost their children to cancer, this is how we visit our daughter. James is so comfortable here which I love but it also breaks my heart because he is so young. We can no longer hear her singing or laughter throughout our house. We can't see her running and dancing in our backyard. We only see her in our minds and in pictures and videos.
Mia along with all the other children who are fighting or who have fought deserve better treatments and funding. Children are more affected by cancer than you would think. 43 children are diagnosed with some form of cancer each day. I think that sounds like a lot don't you? 🎗💛🎗#childhoodcancerawareness #fastestandslowest6months #cantbelievesheisgone #forever6#MakeItAmazing
Day Eighteen - posted 9.18.17
Mia's six weeks of waiting were over and she was scheduled for her MRI, PET, and CT scans. As a parent you are always worried about it all. The anesthesia, the anxiety of your child, and of course what they would find during the scans.
I remember getting the call from the Dr.. All I heard him say was they found something on her lung and they needed to biopsy it. Me being in total shock, trying not to cry in front of Mia and James hung up with the Dr and called Jim. He couldn't even understand what I was saying because I was in such a panic. He came home immediately and started asking me questions. I couldn't answer any of them because I couldn't form any words to ask the doctor when he called. So Jim called and got all our questions answered. The following week we met with the surgeon who told us he would do a lung resection. He believed it was small enough to get the whole thing, and if he can he will. Again, the doctors never used the word cancer or spread because they needed to make sure. They weren't sure if it was just a nodule, the same cancer or a different cancer. Again, it would take 5-7 days to find out the results. We scheduled her surgery for the following week which just happened to be 3 days before Halloween. Our family LOVES Halloween, not only is it fun but it is also Jim's birthday, so this broke her heart and ours. All she wanted to do is go trick or treating and be dressed in her costume and we were very worried she would still be in the hospital. After the surgery Mia had a tube sticking out of her lung to make sure it didn't collapse and she was very uncomfortable. She powered through and did everything they asked and she was out by the 30th of October. She was amazing. We had to take it slow but she was able to go to her class party and then go trick or treating that night. The next time we met with the doctor our lives were turned upside down once again... |
Day Nineteen - posted 9.19.17
Walking into clinic that day was more than nerve wracking. Mia and James were all smiles while we waited for the doctor while Jim and I were already crying on the inside. Lisa the Child Life specialist came to get the kids so we could talk to the doctor in private. (Never a good sign)
As soon as he walked in we knew. All he could say was "I'm sorry." Her cancer had metastasized to her lung while she was on chemotherapy. You see chemotherapy is supposed to stop the cancer from spreading and it didn't which meant, it was not working. He told us that ultimately there was nothing more he could do. There were different more aggressive chemotherapies, but he did not feel comfortable making her more sick because he did not believe it would work. He wanted her quality of life to be the best it could while she was still here. I respect him for being honest and not wanting to hurt her more than she needed to be but, we as parents, and her as a fighter were not ready to give up. Just look at her, she was still so strong and full of life. (These pictures were taken just before we were told it had spread.)
I wish I could tell you what it felt like to hear a doctor tell you your daughter is going die, but I can't. All I know is I am so happy we were all there that day as a family. We were able to hug both are children and tell them we loved them more than anything and we would be together forever no matter what.
Dr. Joe our oncologist at Yale told us he had already been in touch with Dr. Wexler at Sloan and encouraged us to go see him again. The following week, we went to NYC to meet with him to see if there was anything we could try to save our daughter. 🎗💛🎗#chilhoodcancerawareness #itcanhappentoyourchild #wishshewasstillhere #forever6
#MakeItAmazing
As soon as he walked in we knew. All he could say was "I'm sorry." Her cancer had metastasized to her lung while she was on chemotherapy. You see chemotherapy is supposed to stop the cancer from spreading and it didn't which meant, it was not working. He told us that ultimately there was nothing more he could do. There were different more aggressive chemotherapies, but he did not feel comfortable making her more sick because he did not believe it would work. He wanted her quality of life to be the best it could while she was still here. I respect him for being honest and not wanting to hurt her more than she needed to be but, we as parents, and her as a fighter were not ready to give up. Just look at her, she was still so strong and full of life. (These pictures were taken just before we were told it had spread.)
I wish I could tell you what it felt like to hear a doctor tell you your daughter is going die, but I can't. All I know is I am so happy we were all there that day as a family. We were able to hug both are children and tell them we loved them more than anything and we would be together forever no matter what.
Dr. Joe our oncologist at Yale told us he had already been in touch with Dr. Wexler at Sloan and encouraged us to go see him again. The following week, we went to NYC to meet with him to see if there was anything we could try to save our daughter. 🎗💛🎗#chilhoodcancerawareness #itcanhappentoyourchild #wishshewasstillhere #forever6
#MakeItAmazing
Day twenty - posted 9.20.17
So now we are back in NYC hoping to hear she will be okay. Praying to hear the words "I will make her better," but we didn't. He told us the exact same thing we heard at Yale. Most children do not recover from this and handed us a box of crappy hospital tissues within the first three minutes of being in our meeting (Another bad sign). I wish I could explain to you how much I love this doctor. The way he tells you things is so straight forward but so compassionate at the same time. There is no guessing or wondering what is going to happen.
He went on to tell us that he has had some success with different much more aggressive types of chemotherapy if we were willing to try them. He looked us straight in the eyes and told us there was no guarantee this would work but it gives us a glimmer of hope. That is all we needed to hear, a glimmer of hope. After our meeting he quickly brought her into his office to examine her. We mentioned she had a new bump that had started to grow on her neck in the last week. He told us she needed a PET scan right away and had one scheduled for the following day. We spent the night in a hotel and went back the next day for yet another scan. Turns out her cancer had spread again which was not what we wanted to hear. He told us he would see us on Monday for her new treatment and we went home to pack so we could move to NYC. 🎗 💛 🎗 #childhoodcancerawareness #itcanhappentoyourchild #misshermoreeachday #forever6 #MakeItAmazing |
Day Twenty-one - posted 9.21.17
Mia's first day of her new treatment was a crazy one. We had to be there by 7am so they could access her port and then they had to give her an echocardiogram because one of the chemo-therapies could cause damage to her heart. After that was finished they hooked her up to fluids and then they sent us down to X-ray. The Friday before her treatment started we had to come into the city because Mia had a fever and her doctor wanted to check out her lungs before we started. Turns out she had pneumonia so they gave her antibiotics too. Unfortunately Jim and James could not be with us that day because James had a cold, cough, and a fever and he was not allowed on the pediatric floor. This was definitely hard for us. We all moved here so we could be together and now we weren't able to be, at least for this week.
Mia's new treatment was definitely a lot more intense than her previous one. Instead of receiving one chemo 1x per week and three chemos every 3rd week, she now was receiving three or four different chemos for five days straight and this would happen every three weeks. Not only was it more frequent but they were much stronger. This was the first time Mia actually got sick from chemo and this might sound awful for me to say but I was actually happy. I mean, of course I felt awful for her and felt disgusted that we were the ones making her sick, but I thought maybe this meant it was working. Maybe it meant this will actually work, this was what she needed. Just like at home we came up with a routine that Jim and I would take turns bringing her and one of us will stay with James and take him around the city until he was well enough to come to the pediatric floor (that did not happen the first week). We would come back to the apt and if Mia felt well enough she would eat dinner with us. She had a backpack of meds and fluids she had attached to her port. We were asked to wake her up every two to three hours so she could use the bathroom because there were so many fluids being pumped into her. And again she was amazing, we would wake her she would pee and then go right back to sleep. We would repeat this every day, and every day she would get up get dressed smile and say let's go. 🎗 💛 🎗 #childhoodcancerawareness #itcanhappentoyourchild #misshereverysecond #forever6 #MakeItAmazing |
Day twenty-two - posted 9.22.17
Low counts are a part of chemotherapy. Low platelets, low red blood cells, and low white blood cells (ANC). Children have transfusions ALL the time when they are chemo, like it just part of everyday life. One thing you cannot transfuse though are white blood cells. The white blood cells are what help your body fight infections which is why children aren't in school often or go to public places, their immune system is just so low. There is a shot that children receive called Neupogen to help raise their white blood cells but it takes a couple of days to work and you have to give it to them everyday until their counts get higher, and when I say you I mean the parents. Mia had these shots for 5-7 days after each big round of chemo.
If a child has a fever of 100.4 who has a port it is an immediate ER visit. They cannot risk the fever coming from an infection especially from the port. When they are there the nurses and doctors try to figure out where the infection is coming from and if a child's ANC is over 500 they will receive antibiotics through their port and they will be sent home. If their ANC is below 500 they have to stay in the hospital until it gets higher. We were "lucky" this did not happen to us until we started with the heavier doses of chemo therapy.
We left Sloan on Friday and by Weds we were in the ER at Yale because Mia had a fever. One great thing about Yale and Sloan is they worked together to help us stay close to home if we could. She was admitted because she had a cold which caused the fever but her ANC was 0. Oh did I mention it was the Wednesday of Thanksgiving so yes Mia and I were in the hospital for Thanksgiving. All she wanted to do was help make the Turkey and now we are stuck in the hospital. Because she had a cold she was put into isolation in her room because they didn't want to get any other children sick. It was not a great Thanksgiving but we made the best of it. She got to watch the parade and Jim got to come and see her for a little bit too. We didn't want James to be upset so Jim being the super hero dad he is did everything he could to make Thanksgiving awesome for James. 💛 🎗 💛
#childcancerawareness #itcanhappentoyouchild #misshereverysecond #forever6
#MakeItAmazing
If a child has a fever of 100.4 who has a port it is an immediate ER visit. They cannot risk the fever coming from an infection especially from the port. When they are there the nurses and doctors try to figure out where the infection is coming from and if a child's ANC is over 500 they will receive antibiotics through their port and they will be sent home. If their ANC is below 500 they have to stay in the hospital until it gets higher. We were "lucky" this did not happen to us until we started with the heavier doses of chemo therapy.
We left Sloan on Friday and by Weds we were in the ER at Yale because Mia had a fever. One great thing about Yale and Sloan is they worked together to help us stay close to home if we could. She was admitted because she had a cold which caused the fever but her ANC was 0. Oh did I mention it was the Wednesday of Thanksgiving so yes Mia and I were in the hospital for Thanksgiving. All she wanted to do was help make the Turkey and now we are stuck in the hospital. Because she had a cold she was put into isolation in her room because they didn't want to get any other children sick. It was not a great Thanksgiving but we made the best of it. She got to watch the parade and Jim got to come and see her for a little bit too. We didn't want James to be upset so Jim being the super hero dad he is did everything he could to make Thanksgiving awesome for James. 💛 🎗 💛
#childcancerawareness #itcanhappentoyouchild #misshereverysecond #forever6
#MakeItAmazing
Day Twenty-Three - posted 9.23.17
Mia's next round at Sloan was very much of the same, but this time James got to spend time with her at the hospital. When Mia wasn't feeling well or got to tired James would leave and we would go around New York doing different things with him. We had many friends come and help us entertain him on their lunch breaks. It was stressful but great because we got to spend time together, the kids got to be with one another which was their favorite thing to do.
The next time we would return to Sloan would be in two weeks to scan again to see if this mix of chemos were working. We all hoped it was. 🎗 💛 🎗#childhoodcancerawareness #itcanhappentoyourchild #iwantherback#forever6
#MakeItAmazing
The next time we would return to Sloan would be in two weeks to scan again to see if this mix of chemos were working. We all hoped it was. 🎗 💛 🎗#childhoodcancerawareness #itcanhappentoyourchild #iwantherback#forever6
#MakeItAmazing
DAY Twenty-four - posted 9.24.17
Four days before Christmas we found out that the new chemotherapy was not working. Ultimately, this was the day we were told cancer would take her life. How do we tell our families? Do we tell other people? How do we celebrate Christmas knowing what is actually happening?
Mia's doctor suggested we try more radiation since it seemed to slow down the primary tumor, but again this was not going to save her. He was already on top of looking for different clinical trials for her, but you cannot be apart of them unless you have radiation and all chemotherapy out of your body.
So that was it. She would receive 3 more weeks of radiation at Sloan. In those 3 weeks she would receive the same amount of radiation she got in the 6 weeks in NJ. So again this was more intense too.
We were not naive to what was happening, but we were still hopeful something would help her. We were not giving up but also making the best of the time we had together. 🎗 💛 🎗
#childhoodcancerawareness #itcanhappentoyourchild #forever6 #MakeItAmazing
Mia's doctor suggested we try more radiation since it seemed to slow down the primary tumor, but again this was not going to save her. He was already on top of looking for different clinical trials for her, but you cannot be apart of them unless you have radiation and all chemotherapy out of your body.
So that was it. She would receive 3 more weeks of radiation at Sloan. In those 3 weeks she would receive the same amount of radiation she got in the 6 weeks in NJ. So again this was more intense too.
We were not naive to what was happening, but we were still hopeful something would help her. We were not giving up but also making the best of the time we had together. 🎗 💛 🎗
#childhoodcancerawareness #itcanhappentoyourchild #forever6 #MakeItAmazing
Day twenty-five - posted 9.25.17
On Christmas morning the kids woke up as excited as ever and opened up their gifts. After breakfast we started packing because Mia had to be at Sloan by 7am the next day. I honestly think Jim and I were more upset than they were that we had to leave on Christmas Day. The kids happily put on their new Star Wars Costumes and packed up some of their toys to bring to NYC with us, just another example of how our kids were stronger than we were. We had McDonald's on our way down for dinner because that was the only place open on Christmas night. When we arrived at our apt there was a huge surprise waiting for us. The staff at the building all chipped in to make our Christmas special. We had a tree with presents, stockings with our names on them, along with dinner and desert. It was truly was magical, and I still cry every time I think of how selfless they were.
We spent two weeks in NYC while she received radiation and one week of driving back and forth. I don't know how to explain those two weeks in NYC, except they were fun. Yes, Mia was sedated every morning and getting radiation treatments but because she had been off chemo for almost a month we were less apprehensive to take her to places. We wanted her to experience everything and we certainly tried in those two weeks. It was the four of us running around the city doing anything you could think of.
One thing I want people to understand is how lucky we were to have that time. There are so many families going through what we did but their family is not able to be together. In most cases one parent usually has to stay behind for weeks or months to keep an income coming in, or they stay at home with their other children, their families are split up because they have to be. We are so grateful for all the sacrifices people made to let us have that time together.
🎗 💛 🎗#childhoodcancerawareness #Wishshewashere #forever6 #MakeItAmazing
We spent two weeks in NYC while she received radiation and one week of driving back and forth. I don't know how to explain those two weeks in NYC, except they were fun. Yes, Mia was sedated every morning and getting radiation treatments but because she had been off chemo for almost a month we were less apprehensive to take her to places. We wanted her to experience everything and we certainly tried in those two weeks. It was the four of us running around the city doing anything you could think of.
One thing I want people to understand is how lucky we were to have that time. There are so many families going through what we did but their family is not able to be together. In most cases one parent usually has to stay behind for weeks or months to keep an income coming in, or they stay at home with their other children, their families are split up because they have to be. We are so grateful for all the sacrifices people made to let us have that time together.
🎗 💛 🎗#childhoodcancerawareness #Wishshewashere #forever6 #MakeItAmazing
Day twenty-six - posted 9.26.17
When radiation was over we were sent home and were told Mia would have another scan in about 6 weeks to see if radiation had slowed down the activity of the new tumor in her neck. This was one of the scariest days so far. No more treatments for our girl. For the last 10 months, that is all we have known, it is all we have done. Going to and from the hospital to get different treatments to make her better, and that was all over. All I could think was what will happen in these next six weeks? Will she get sick? Will her cancer spread somewhere new? Without her having any chemo treatments that was inevitable, I mean it happened when she was on chemotherapy, so what will happen now that she completely off? In my mind I though she had at least a year before it started spreading throughout her body.
We returned home and Mia went to school like a normal kid. We had her Make a Wish party because we were headed out on her wish trip on February 1st. The kids were more than excited because we were going to Disney and to Clearwater Aquarium so Mia could meet Hope and Winter, her favorite dolphins. Of course there were a couple of wrinkles in our plan. The week before we were leaving James got the flu. We all got prescriptions for tami-flu and as awful as it sounds James was put into quarantine. Mia and James shared a room and if Mia got sick not only would she end up at Sloan, we wouldn't be able to go on our trip. In those five days they missed one another more than I thought they would. Mia would put a mask on to go in and see him real quick just because she missed him. James got better and we were all set to go and the day before we left Mia got what we thought was the stomach bug. We went back and forth with whether or not to reschedule our trip, but Mia really wanted to go and assured us she was or at least would be fine so we went. She had a tough time on the plane but as soon as we got to Florida she was so excited she started to feel better. I still can't believe we made the decision to go, but I am happy we did because she would have been gone before we could have rescheduled. 🎗 💛 🎗 #childhoodcancerawareness #itcanhappentoyourchild #misshermoreeachday #forever6 #MakeItAmazing |
Day Twenty-SEVEN - posted 9.27.17
Mia's wish trip was nothing less than amazing and I am more than grateful we were able to make those memories together. Make a Wish, Give Kids the World, Disney, and Clearwater Aquarium really went above and beyond for us and they do for all wish kids. Mia's favorite part by far was going and being a trainer on the platform with Hope at the aquarium, her eyes and smile lit up the room. Thank you Andrea Verdone for making that portion possible. I could write a book just about our trip and post thousands of pictures but we already did that in February. If you want to watch the videos they are still on Youtube (NOTE: they are posted further down on this page).
When we returned Mia and James went back to school and we got ready for James' birthday. Mia loved celebrations, birthdays and holidays were her favorite. Any excuse to have cake and buy something for someone. His party was the following day with our family, his friends from school and our neighborhood. Unfortunately, Mia only lasted about 25-30 minutes. She ended up not feeling well and had a fever so I took her to Yale. Jim stayed with our family and friends at the rock gym. That day was hard for all of us. I wanted to celebrate and be there for James, Jim wanted to be at the hospital with Mia, and James just wanted to celebrate his birthday. That is one of the things that was so hard about last year, always wanting to be in two places at once, making sure both kids felt they were important.
Yale gave her a couple of tests and a round of antibiotics through her port and told us to come back the following day for her second round of antibiotics and the flu test. Early the next morning (around 5am) Mia woke up and her fever was 104.6. Needless to say I freaked out and we drove down to Sloan. We were there for many hours to find out that she had the flu. We were sent home with tami-flu again and now this time Mia was sent into quarantine. The first couple of days she was great and you could tell she was starting to feel better but then all of a sudden she started to lose a lot of energy and would say her stomach hurt... 🎗 💛 🎗#childhoodcancerawareness #itcanhappentoyourchild #misshersmileandlaugh #forever6#MakeItAmazing
When we returned Mia and James went back to school and we got ready for James' birthday. Mia loved celebrations, birthdays and holidays were her favorite. Any excuse to have cake and buy something for someone. His party was the following day with our family, his friends from school and our neighborhood. Unfortunately, Mia only lasted about 25-30 minutes. She ended up not feeling well and had a fever so I took her to Yale. Jim stayed with our family and friends at the rock gym. That day was hard for all of us. I wanted to celebrate and be there for James, Jim wanted to be at the hospital with Mia, and James just wanted to celebrate his birthday. That is one of the things that was so hard about last year, always wanting to be in two places at once, making sure both kids felt they were important.
Yale gave her a couple of tests and a round of antibiotics through her port and told us to come back the following day for her second round of antibiotics and the flu test. Early the next morning (around 5am) Mia woke up and her fever was 104.6. Needless to say I freaked out and we drove down to Sloan. We were there for many hours to find out that she had the flu. We were sent home with tami-flu again and now this time Mia was sent into quarantine. The first couple of days she was great and you could tell she was starting to feel better but then all of a sudden she started to lose a lot of energy and would say her stomach hurt... 🎗 💛 🎗#childhoodcancerawareness #itcanhappentoyourchild #misshersmileandlaugh #forever6#MakeItAmazing
Day Twenty-Eight - posted 9.28.17
Mia seemed to be getting worse by the day. She wouldn't each much of anything and would just lay around on the couch. During the day she would tell us she was okay, just tired and her stomach hurt a little bit. Honestly, I thought it was because of the tami-flu; upset stomach is a side effect. Once her nights started getting bad we knew something was wrong. She would be sleeping and she would scream and say how badly her belly hurt but when we would go in her room to wake her and she would tell us the she was FINE. It happened all night long, for to many nights. She couldn't sleep but refused to tell us she was in pain. We kept telling her we would take her to the doctor but she was insistent that she didn't want to go. She knew we would be going the following Tuesday for scans and she just wanted to be home. I couldn't argue with that. We were on the phone with MSK many times that week. They were great and just kept telling us to bring her in, if we needed to.
Friday evening Dr. Wexler called and told Jim about a clinical trial in Baltimore. He told him he had already been in touch with the doctors, and we would speak more about it on Tuesday when we came in. Without hesitation we were ready to move. This is something that could help her and we decided we would go even before hearing the details.
Sunday night was so bad I called MSK again, this time Dr. Wexler told me to bring her in. So Monday morning, the day before her scan, Mia and I went into the City. Thanks to an amazing nurse who told me "She is going to be mad at you, but we should admit her and get her pain under control. Get a good night sleep, you both need sleep." She was right we all needed sleep. You see, I was going back and forth on whether to stay at a hotel or stay at the hospital. We already had a hotel because we had planned to stay anyway because her scan was so early. Jim and James were coming and came down after school/work and we ate dinner together in her hospital room. They put Mia on a constant drip of pain meds which seemed to help her a bit. She actually slept through the night. The next day she had her scan. We were prepared for the scan but definitely not prepared for the results.
🎗 💛 🎗#childhoodcancerawareness #itcanhappentoyourchild #misshersmile #forever6
#MakeItAmazing
Friday evening Dr. Wexler called and told Jim about a clinical trial in Baltimore. He told him he had already been in touch with the doctors, and we would speak more about it on Tuesday when we came in. Without hesitation we were ready to move. This is something that could help her and we decided we would go even before hearing the details.
Sunday night was so bad I called MSK again, this time Dr. Wexler told me to bring her in. So Monday morning, the day before her scan, Mia and I went into the City. Thanks to an amazing nurse who told me "She is going to be mad at you, but we should admit her and get her pain under control. Get a good night sleep, you both need sleep." She was right we all needed sleep. You see, I was going back and forth on whether to stay at a hotel or stay at the hospital. We already had a hotel because we had planned to stay anyway because her scan was so early. Jim and James were coming and came down after school/work and we ate dinner together in her hospital room. They put Mia on a constant drip of pain meds which seemed to help her a bit. She actually slept through the night. The next day she had her scan. We were prepared for the scan but definitely not prepared for the results.
🎗 💛 🎗#childhoodcancerawareness #itcanhappentoyourchild #misshersmile #forever6
#MakeItAmazing
Day Twenty-Nine - posted 9.29.17
A few hours after Mia's scans her doctor came to see how she was feeling and to touch base with Jim and myself. We went out into the hallway and he started to give us the preliminary results. It takes about a day or so for the radiologist to give their final report.
Her cancer had spread more than I think, even her doctor expected. It was in her stomach, her hip, her lungs, more in her neck and cheek, and attached to her eye. It could have been other places too but I couldn't listen anymore. I just wanted to fall on the floor in a ball and cry. How is this possible? How could it have spread that quickly? We were just running around Florida. Jim asked about the clinical trial but because it spread so fast she no longer qualified, her body was to weak. And then we asked the question you don't want to ask, and the doctor doesn't want to answer, how much time does she have? He told us he did not believe she would make it to her 7th birthday. I couldn't even believe what he just said. Jim tried to hug me but I couldn't, I knew I would just collapse, but thinking back I wish I let him, not for me but for him. He was just told the same awful news I was and he needed it. Dr. Wexler said he was very sorry and they would do everything to make her as comfortable as possible. We set up a meeting for the next day to go over the official results and talk about all of our options.
The next day’s meeting was even more heart breaking than we could have imagined. We were brought into the family room on the floor. It is the one private room where you can close the door. Let me tell you, when you need a too have a private conversation in a hospital it usually doesn't end well. We had too many private conversations the next 3 weeks. By the end I really hated that room. We met with Dr. Wexler, her nurses, and the pain team. They went on to tell us there was nothing more they could do except make her comfortable. After looking at the final reports Mia's doctor told us she had only 2-3 weeks left. They went on to tell us we had options of staying there, going to Yale or even taking her home through hospice. We had to let them know about a DNR and they talked us through how they were going to manage her pain. We were both totally crushed. How do you even make these decisions for your six year old daughter? In my mind when I heard Birthday I was optimistic, I thought we would get her pain under control bring her home and have time, I needed more time. Her doctor never said this obviously, but the day before that is what I thought would happen, and now we are sitting here crying and holding each other’s hands again not ready to say goodbye to our daughter, James' big sister, his best friend.
During that first week we had glimpses of our amazing daughter. Thanks to the pain meds for a couple of hours a day she was able to sit up, be her spunky self, and play. She still couldn't get out of bed unless it was to use the restroom but just having her sit up, playing with James and smiling was what we needed. Each day they had to increase her pain medication, which meant she would get more tired and by the second week she was exhausted a lot of the time. You could see the physical changes in her face and neck too. Her tumors were growing and here was nothing we could do. She had to be uncomfortable but again never complained about it.
It's funny because she never asked why we were there, she never asked when we would go home, she just accepted that she was at the hospital and the doctors were helping her the best they could. We made the decision not to tell her what was happening. She was scared enough as it was, but I still wonder if she knew? Was there some higher being helping her be strong for Jim, James and myself? Because believe me I have never seen strength like this in my life. 💛 🎗 #childhoodcancerawareness #itcanhappentoyourchild #iwantherback #forever6 #MakeItAmazing
Her cancer had spread more than I think, even her doctor expected. It was in her stomach, her hip, her lungs, more in her neck and cheek, and attached to her eye. It could have been other places too but I couldn't listen anymore. I just wanted to fall on the floor in a ball and cry. How is this possible? How could it have spread that quickly? We were just running around Florida. Jim asked about the clinical trial but because it spread so fast she no longer qualified, her body was to weak. And then we asked the question you don't want to ask, and the doctor doesn't want to answer, how much time does she have? He told us he did not believe she would make it to her 7th birthday. I couldn't even believe what he just said. Jim tried to hug me but I couldn't, I knew I would just collapse, but thinking back I wish I let him, not for me but for him. He was just told the same awful news I was and he needed it. Dr. Wexler said he was very sorry and they would do everything to make her as comfortable as possible. We set up a meeting for the next day to go over the official results and talk about all of our options.
The next day’s meeting was even more heart breaking than we could have imagined. We were brought into the family room on the floor. It is the one private room where you can close the door. Let me tell you, when you need a too have a private conversation in a hospital it usually doesn't end well. We had too many private conversations the next 3 weeks. By the end I really hated that room. We met with Dr. Wexler, her nurses, and the pain team. They went on to tell us there was nothing more they could do except make her comfortable. After looking at the final reports Mia's doctor told us she had only 2-3 weeks left. They went on to tell us we had options of staying there, going to Yale or even taking her home through hospice. We had to let them know about a DNR and they talked us through how they were going to manage her pain. We were both totally crushed. How do you even make these decisions for your six year old daughter? In my mind when I heard Birthday I was optimistic, I thought we would get her pain under control bring her home and have time, I needed more time. Her doctor never said this obviously, but the day before that is what I thought would happen, and now we are sitting here crying and holding each other’s hands again not ready to say goodbye to our daughter, James' big sister, his best friend.
During that first week we had glimpses of our amazing daughter. Thanks to the pain meds for a couple of hours a day she was able to sit up, be her spunky self, and play. She still couldn't get out of bed unless it was to use the restroom but just having her sit up, playing with James and smiling was what we needed. Each day they had to increase her pain medication, which meant she would get more tired and by the second week she was exhausted a lot of the time. You could see the physical changes in her face and neck too. Her tumors were growing and here was nothing we could do. She had to be uncomfortable but again never complained about it.
It's funny because she never asked why we were there, she never asked when we would go home, she just accepted that she was at the hospital and the doctors were helping her the best they could. We made the decision not to tell her what was happening. She was scared enough as it was, but I still wonder if she knew? Was there some higher being helping her be strong for Jim, James and myself? Because believe me I have never seen strength like this in my life. 💛 🎗 #childhoodcancerawareness #itcanhappentoyourchild #iwantherback #forever6 #MakeItAmazing
Day Thirty - posted 9.30.17
Week two did not start off the way we would have hoped. Since Mia had never been inpatient for more than a week Jim and I did not know they had to change her needles in her port. They do this once a week to prevent infection. When Mia found this out, she was NOT happy. We had also already promised her we would take her to the American Girl Store that day. At MSK you can get day passes to go do things if your doctor says it's ok. We told her as soon as they were done changing her needles we could go to American Girl. I was hoping that would help it go faster but it didn't. It took us around an hour just to get the tape off and needles out. We put more numbing cream on her port and Jim and I gave her a shower for the first time in a week. Taking a shower was so hard for her. She was so weak that she couldn't stand for more than a couple of minutes so one of us held her while the other one washed her as quick as we could. We got her dressed and laid her back in bed. It took another 20 minutes to get the needles back in, because she was still strong enough to fight the two nurses who were in there. Just those small things took so much energy out of her that she slept for four hours after that.
When she woke she was still exhausted but she insisted we still go to the AG store. So we put her in a wheel chair and pushed her from the Upper East Side to Rockefeller Center (she thought she would get sick in the cab). I envisioned her being so excited to be there and looking around and picking out different things but that didn't happen. She was so tired she couldn't even lift her head up and would just quietly point at things she liked. She lasted maybe 15 minutes in the store before she was ready to leave. It was heartbreaking.
As the week went on she got more and more uncomfortable and each day they would increase her pain medications. They were nervous she was going to go blind because you could see how much the tumor was pushing on her left eye, and she was always rubbing it. She would tell us was bothering her but never in a complainer kinda way. We met with her radiologist who suggested we do one more round of radiation to try and give some relief to her eye. We agreed and at the end of the week they tried. Unfortunately, she was back with us in ten minutes because her lungs couldn't take the anesthesia. She was so upset coming back because while she was under they were going to change her needles again so they didn't have to do it on Monday. Everything happened so quickly they never had the chance and she knew. She was crying and yelling "you lied to me" while they rolled her into her room. I picked her up and just held her, it was the first time she had let me hold her since we got there and didn't want to let go. It was also the last time I got to hug her, like really hug her, and I will never forget it.
When she felt well enough she would still play with James which always made us smile. It was definitely hard for some to understand why we wanted him there all he time but we wanted him to be with her and with us. We wanted our family together. He would come in the morning and he would leave either after dinner or right before. Jim and I would take turns sleeping at the apt with him or staying at the hospital with Mia. Again, we needed him to know we loved him too. He was important to us and to Mia. She wanted him there. She wanted him to know she loved him too.
💛 🎗 💛
#childhoodcancerawareness #itcanhappentoyourchild #wishshewasstillhere#forever6
#MakeItAmazing
When she woke she was still exhausted but she insisted we still go to the AG store. So we put her in a wheel chair and pushed her from the Upper East Side to Rockefeller Center (she thought she would get sick in the cab). I envisioned her being so excited to be there and looking around and picking out different things but that didn't happen. She was so tired she couldn't even lift her head up and would just quietly point at things she liked. She lasted maybe 15 minutes in the store before she was ready to leave. It was heartbreaking.
As the week went on she got more and more uncomfortable and each day they would increase her pain medications. They were nervous she was going to go blind because you could see how much the tumor was pushing on her left eye, and she was always rubbing it. She would tell us was bothering her but never in a complainer kinda way. We met with her radiologist who suggested we do one more round of radiation to try and give some relief to her eye. We agreed and at the end of the week they tried. Unfortunately, she was back with us in ten minutes because her lungs couldn't take the anesthesia. She was so upset coming back because while she was under they were going to change her needles again so they didn't have to do it on Monday. Everything happened so quickly they never had the chance and she knew. She was crying and yelling "you lied to me" while they rolled her into her room. I picked her up and just held her, it was the first time she had let me hold her since we got there and didn't want to let go. It was also the last time I got to hug her, like really hug her, and I will never forget it.
When she felt well enough she would still play with James which always made us smile. It was definitely hard for some to understand why we wanted him there all he time but we wanted him to be with her and with us. We wanted our family together. He would come in the morning and he would leave either after dinner or right before. Jim and I would take turns sleeping at the apt with him or staying at the hospital with Mia. Again, we needed him to know we loved him too. He was important to us and to Mia. She wanted him there. She wanted him to know she loved him too.
💛 🎗 💛
#childhoodcancerawareness #itcanhappentoyourchild #wishshewasstillhere#forever6
#MakeItAmazing
day thirty-one - posted 10.1.17 - Marian's final post
Watching your child die is something no parent should ever have to experience. There are no words to describe the feelings and emotions that come with it. It is something you can never understand unless it happens to you, and I hope it never does.
That last week in hospital was indescribable. Mia went from being awake for about half the day, to being awake for only a couple of hours a day, and that is being generous. We would get glimpses of Mia but only for a couple of minutes at a time. She was on so many pain meds that when she spoke, half of the time you could not understand what she was saying. Her breathing had started to change and Jim and I both started sleeping at the hospital because we wanted to be there in case it happened. We were just sitting there waiting for her to die. A couple times we really thought it was happening because honestly it is hard to know especially when you have never experienced it before. As Jim and I sat their holding her hands, telling her how much we loved her, and how amazing we thought she was, she said, "stop crying over me, I am trying to sleep." We couldn't help but laugh. How was she so awesome? How is she still making us laugh?
Like I had mentioned earlier Mia never asked us why we were there or when we go home, but a day or two before she passed she asked me when this would be over. With tears rolling down my face all I could say was, “soon, baby, it will be over soon."
Around 10:30 PM on St. Patrick's day Mia passed away. Jim and I were both with her singing her lullabies and telling her how much loved and proud of her we were. We were proud, proud she finally let go. Happy she was no longer in pain, but now our pain would truly begin.
Each day we wake up with a part of us missing. We have to figure out how to actually get out of bed each day and try to live without her. Everything is different, we are different. Again, I cannot explain but we will never be the same. We are forever those parents that will say we have two children even though one is no longer with us. We are that family people look at because they know what happened and don't know what to say. James has to sleep alone in a room he once shared with his sister. We have to teach him to talk about Mia without scaring other children or adults. We have to make sure he knows it is okay to be sad she is gone, but also help him remember that he always loved her the most. It is exhausting getting through each day. She has been gone a little over six months and I miss her more now. It is not fair she has been taken by cancer.
Today another eight children will be taken by cancer. Eight more families will have to say goodbye to their precious children. I never knew how many children are affected by cancer and probably would not have if Mia wasn't diagnosed. Please be aware and please donate to pediatric causes. Pediatrics only gets 4% of what is raised nationally. I don't think that is enough, do you?
💛🎗💛
#childhoodcancerawareness #itcanhappentoyourchild #iwantherback #morethan4
#forever6 #MakeItAmazing
That last week in hospital was indescribable. Mia went from being awake for about half the day, to being awake for only a couple of hours a day, and that is being generous. We would get glimpses of Mia but only for a couple of minutes at a time. She was on so many pain meds that when she spoke, half of the time you could not understand what she was saying. Her breathing had started to change and Jim and I both started sleeping at the hospital because we wanted to be there in case it happened. We were just sitting there waiting for her to die. A couple times we really thought it was happening because honestly it is hard to know especially when you have never experienced it before. As Jim and I sat their holding her hands, telling her how much we loved her, and how amazing we thought she was, she said, "stop crying over me, I am trying to sleep." We couldn't help but laugh. How was she so awesome? How is she still making us laugh?
Like I had mentioned earlier Mia never asked us why we were there or when we go home, but a day or two before she passed she asked me when this would be over. With tears rolling down my face all I could say was, “soon, baby, it will be over soon."
Around 10:30 PM on St. Patrick's day Mia passed away. Jim and I were both with her singing her lullabies and telling her how much loved and proud of her we were. We were proud, proud she finally let go. Happy she was no longer in pain, but now our pain would truly begin.
Each day we wake up with a part of us missing. We have to figure out how to actually get out of bed each day and try to live without her. Everything is different, we are different. Again, I cannot explain but we will never be the same. We are forever those parents that will say we have two children even though one is no longer with us. We are that family people look at because they know what happened and don't know what to say. James has to sleep alone in a room he once shared with his sister. We have to teach him to talk about Mia without scaring other children or adults. We have to make sure he knows it is okay to be sad she is gone, but also help him remember that he always loved her the most. It is exhausting getting through each day. She has been gone a little over six months and I miss her more now. It is not fair she has been taken by cancer.
Today another eight children will be taken by cancer. Eight more families will have to say goodbye to their precious children. I never knew how many children are affected by cancer and probably would not have if Mia wasn't diagnosed. Please be aware and please donate to pediatric causes. Pediatrics only gets 4% of what is raised nationally. I don't think that is enough, do you?
💛🎗💛
#childhoodcancerawareness #itcanhappentoyourchild #iwantherback #morethan4
#forever6 #MakeItAmazing
Jim McCaffrey's Keynote Speech at Infinite Love for kids fighting cancer "Wish for a Cure Gala 2017"
"We get involved with organizations like Infinite Love for Kids Fighting Cancer to help people, to educate them, and to give them the most precious thing one person can give another: hope."
- Jim McCaffrey |
JOIN US and be a part of the solution! |
FIGHTER
by: the Taylor Tote Band featuring Natalie and Hannah Gorsegner
Music Video Starring: Mia Rose McCaffrey
Music Video Starring: Mia Rose McCaffrey
Mia's make-a-wish trip
We will never forget the memories we made on our trip to Florida for Mia's Make-A-Wish trip. We went to Give Kids the World, Disney World, Universal Studios, Clearwater Beach, and the Clearwater Marine Aquarium. No two people deserved this trip more than Mia and James -- and they got to do it together.
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"Mia's Family Hug presents:
Blind bag Challenge"
Mia loved watching unboxing videos on YouTube. While in Somerset, New Jersey for her first round of radiation in June/July 2016, she recorded this amazing video with the help of her dad, Jim. You can see the magic and beauty in her personality throughout the video. She was so proud of this video and we are happy she was able to watch it get her some YouTube fame before she passed.