When we hear someone say, “I just had a baby,” or “I had a quadruple bypass,” or “I had a double mastectomy,” our first reaction is usually, “Wow, that’s amazing! I’m glad you’re OK.”
But the real nitty gritty, sometimes horrendous details of what it takes to go through all those stressful, sometimes life-threatening events will never be known to anyone except those who have been there. And even then, every situation is different.
We’d like to introduce you to a valiant and brave, spunky and determined little 8-year-old named Cami Carver, the daughter of Pat (Linda’s sister’s son) and Chelsea Carver. Her journey to a bone marrow transplant has been not only extraordinary but almost beyond belief! There is no way that we can adequately describe the maze of doctors, consultants and rip-your-heart-out emotions that Cami and her family have navigated to get where they are today … 10 days beyond a bone marrow transplant.
Cami is one incredible little individual, mature far beyond her years. She was diagnosed with leukemia when she was 4 years old. This beautiful child fought cancer exceptionally well through her long and arduous two-and-a-half years of treatment and even became the poster child in Times Square in NYC for childhood cancer.
While going through the horrors of chemotherapy and radiation and, worst of all, the steroids, she met lots of new friends who were fighting the same fight with cancer. Sadly, in June, Cami, who had then been in remission for nine months by then, dauntlessly spoke at the funeral of her best friend, 7-year-old Millie who had tragically lost her fight with cancer.
Shortly after Cami joined us for a day at Bear Lake in late July, she started feeling intense pain in her large bones. Though she was given a 93% chance of being cancer free after those terrible years of treatment, the cancer was back. Cami’s mom Chelsea, had by then become an active advocate for children with cancer and their families through a website. After doing so much good for so many families, suddenly she found herself “back in the saddle again.” Ah life!
But this beautiful Cami was strong and optimistic, a born fighter and was ready to fight cancer again! This picture was taken the day she was to have her head shaved for the second time. Excited to add a little color to her hair for a few hours before it was gone, she was ready to face the challenge. She delighted us when we asked about how she felt about her hair being gone again and she said, “You know I’m kind of looking forward to the feeling of that cool pillow on my bald head.” What a girl! Shauna Lake and the crew at Channel 2 fell in love with Cami and her story (as we all have) and after Cami reported to the hospital for her next journey through chemo, radiation and the dreaded steroids, Shauna interviewed Cami from her hospital bed. You can see the delightful interview here.
Parents, family members and a huge congregation of friends rallied, held fund raisers and showed support beyond belief. For a look at one of those fun events check here. About a thousand people showed up on that day to support Cami and to join the National Bone Marrow Registry, which requires only a quick swab of the cheek on a cotton swab. To order your own kit (if you’re between 18 and 44) go to bethematch,org. and it will be mailed to you.
It was determined by then that Cami would probably have to have a bone marrow transplant, but she needed “a perfect match,” someone who had 10 markers that exactly matched her DNA. In the hundreds of thousands of people in the registry, there was only one … 10/10 … perfect match. The hospital contacted the possible donor, and the family waited on pins and needles for the answer as to whether or not this young man in his 20s was willing to donate his marrow. Her friend Millie’s 10/10 match had, for whatever reason, declined to help, so they were forced to use a less than perfect match.
When the word from Cami’s “perfect” donor came back positive, all of us were overjoyed. He was willing to save her life! The family, grateful beyond words, will not be allowed to communicate with this young man for a year, but we think of him as her saving angel!
After each round of chemo and radiation Cami was allowed to go home for a few days. The steroids make her blow up like a balloon but just look at this proud face after finishing “rouwd” 2.
The interesting thing about these treatments is that one month after the first dose of chemo, the cancer is completely gone. The rest of pumping of all that poison into the cancer victim’s body are just follow-up insurance treatments.
During the break before the last “big, bad” round of chemo and radiation, a terrific organization called Children and the Earth along with the Marriott Corporation sponsored a trip for Cami and her adorable little brother Caden and her mom and dad to visit Disneyland. They had what they deserved … the time of their lives: But then it was back to the hospital and the really hard part … the horrendous part! They had to bring Cami to the brink of death with massive chemo and radiation treatments that would kill her own bone marrow so that her body would allow the new bone marrow to come to the rescue. Although most procedures had taken place at Primary Children’s Hospital in Salt Lake City, Cami was taken to the Huntsman Cancer Center for radiation. She had to stand, strapped in a huge machine and hold completely still for 20 minutes on the front and again on the back. This procedure killed everything in its path in her body in preparation for receiving the new bone marrow. Not a happy event! Look at this brave little girl. Even parents weren’t allowed to be there for support. And then on October 29, it was her 2nd BIRTHDAY! The bone marrow had arrived and it would create her second birth! She would now have the DNA of a man and her blood type would change from A positive to O negative. Incredible! See the precious package of marrow below, donated by a young father who was sedated in order to give this unusually large amount of marrow: The doctors and nurses gathered to sing Happy Birthday to this valiant child: For four hours this precious liquid dripped slowly into Cami’s system just like a blood transfusion. Toward the end of the four hours, she actually got up and dragged her machinery with her to the window of her room where she waved at us along with a crowd of her incredibly supportive extended family with posters and happy birthday wishes. Her resistance to bacteria at that point is at zero so only parents and grandparents (meticulously clean) were allowed into the room.
The family knew that the three weeks after the transplant was going to be pretty intense. Cami was expected to be terribly sick after the transplant, but it was even worse than expected. Here are some of the gory details from Cami’s mom a few days ago:
“Are we really only 6 days past transplant? It feels like a lifetime ago! Things have progressively gotten harder for our sweet Cami the last few days and even though her symptoms are all expected, nothing could have prepared us for how difficult it has been on her. She officially has full-blown mucositis (a painful inflammation and ulceration of the mucous membranes lining the digestive tract) imagine canker sores lining your mouth, throat, and entire digestive tract. It is VERY painful. So painful that it makes it difficult for Cami to even swallow her own saliva (she stopped eating well over a week ago, they are feeding her through her IV now and she uses suction so she doesn’t have to swallow). Mucositis also causes nausea and diarrhea. It is not pleasant.”
Poor Cami! This indefatigable little spirit is down. And the journey to recovery will be long as they protect her from bacteria because her immune system is gone. This includes food being heated to a certain temperature, no fresh fruits or vegetables, visitors much be meticulously clean and an unbelievably long list of other safety measures.
But some time in the next two weeks the new marrow is going to “engraft” or in other words, her body will recognize the donor’s bone marrow which will find its way to where it’s supposed to be in her body and start the process of rescuing Cami and we’ll see that contagious smile again.
How does that happen? It’s a miracle! Thanks to a lot of doctors and clinicians who gave their lives to figure out how to make this work! The grim reality, however, is that that they lose one in five children who have bone marrow transplants.
In the meantime, thousands of prayers have gone up to heaven on Cami’s behalf. Her supply of gifts and toys and stuffed animals from well-wishers is endless. But her little stuffed “Froggy,” given to her by her daddy before her first chemo treatment all those years ago has stood by her through it all. In fact, Froggy recently received his own transplant — new stuffing from a newer stuffed animal. See more about that sweet story here. For more details and to keep up with Cami’s progress check, Chelsea’s blog at kissesforcami.com.
What an inspiration this little girl as been to so many already in her young life. Going through difficult trials, especially when you have an optimistic and valiant spirit like Cami’s, makes a strong soul stronger. We all realize that once she has recovered from this trial she will find “beauty from ashes.” She is going to be able to help others who are going through the same thing as no one else can. Only she will know how to help the long line of childhood leukemia patients and their families who come behind her because she has been there.
So the hope is that when you hear about someone having a bone marrow transplant, that you will remember Cami’s incredible journey and know that she is out there inspiring others to not only survive but thrive!