Mia just 6 months prior to diagnosis. | MIA ROSE MCCAFFREY was just 6-years-old when she died from childhood cancer (rhabdomyosarcoma) after having been diagnosed just one year prior. Mia didn’t “earn her angel wings” or “lose her battle,” and she certainly hasn’t “gone to a better place.” These are all terms that we adults often use to soften the blow when we hear that a child has died. It’s a way for us to temporarily take our heads out of the sand in order to show our respect to the grieving family, before ultimately sticking them back into the sand so that we can pretend that childhood cancer truly is a rare disease. |
Every day in September (childhood cancer awareness month), Mia’s brave mom Marian will give us a small glimpse into what their life was like during Mia’s fight against rhabdomyosarcoma. Marian’s posts won’t always be “easy” to read, but there’s nothing easy about childhood cancer, and keep in mind that the McCaffrey’s weren’t a childhood cancer family until the day that they were.
Please share Mia’s story and GO GOLD this September, more awareness = more funding for desperately needed research (click here to donate towards rhabdomyosarcoma research).
Click "Read More" (below right) to access Marian's blog posts.
September 1, 2017 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. |
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 as to 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 Smillow 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 |
September 5, 2017 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 |
As parents we knew loosing her hair would be the moment people would look at her and know that 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.
September 8, 2017 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. |
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 |
September 10, 2017 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 |
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.
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 |
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 |
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.
September 13, 2017 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. |
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 thepool 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 |
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. |
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. |
September 16, 2017 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. |
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?
Mia's six weeks of waiting were over and she was scheduled for her MRI 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 |
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).
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.
September 20, 2017 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 |