For Patients & Families

Part 1: Diagnosis and Treatment for Leukemia

Charlie is diagnosed with acute lymphoblastic leukemia (ALL) and undergoes two years of treatment at Dana-Farber/Boston Children's Cancer and Blood Disorders Center. Below are excerpts from a series of emails that Caroline Rider wrote to her extended family and circle of friends. 

10/16/06

Our Charlie has been diagnosed with leukemia. We know what a shock it can be to hear this. The type of leukemia he has is called ALL and it is the most common and the most treatable. The good news is that we live close to the one of the best children's cancer centers in the world, and Charlie has an excellent prognosis. He will be in Children's Hospital for at least a month. When he is discharged, he will be in remission. Once he goes home, he will return to Dana-Farber's Jimmy Fund Clinic once a week for two years.

10/27/06

Charlie is HOME!!!

After being told that he would have to be in the hospital for at least a month, the doctors say he is doing so well that he could go home. We are thrilled because we all get to sleep under the same roof again. We are also TERRIFIED because we have a long road ahead.

11/05/06

Charlie started to lose his hair this week. We don't have pets, but our furniture looks like we have shedding cats in the house. It was driving him crazy so he asked if he could get it cut. His Aunt Krista obliged with a backyard buzz cut. His hair is now only about a ¼ inch long, but soon he won't have any hair at all. The new look suits him. He has a beautiful round head.

11/18/06

Charlie is in remission! A recent bone marrow biopsy showed there are no cancer cells in his body. Alas, the doctors know from years of studying this disease that there are still some leukemia cells lurking somewhere. The crafty little devils are waiting for us to drop our guard so they can attack again. But we won't let them. That is why Charlie is in the hospital again – this time to get a massive dose of chemo.

12/21/06

Other than the first few numbing days after Charlie's diagnosis, the past few weeks have been the hardest. Charlie had nine Jimmy Fund Clinic visits in three weeks (four of them surgical procedures). I have never felt so bone tired in my whole life.

Charlie has not been his happy, charming self and that has been hard to watch. He has been very clingy, needy, whiny, angry, and at times in pain. I have found it difficult to get to know the other parents at the clinic because, frankly, I have a hard time wrapping my brain around the fact that my child is sick.

2/05/07

We continue to make weekly visits to the Jimmy Fund Clinic where every single person there is truly amazing. What a place! I don't know how they do it day in and day out, but they will all always have a special place in our hearts.

3/02/07

I find myself referring to situations as BD and AD (Before and After Diagnosis). Our life is certainly not what it was BD, but we seem to have found a sort of normalcy that works for us. Charlie is doing well … considering.

During the first few weeks, every time a doctor or nurse came in the room I really believed that they were going to say, "We are so sorry. There has been a huge mistake. Your child is perfectly healthy and you are free to go." But after six months it has finally sunk in that this is happening to us.

9/09/07

Love and War

For a few weeks, Charlie had excruciating leg pain as a result of his medications. Once while his visiting nurse, Kathie, was here, Charlie was complaining about the pain. Kathie explained that it was probably the bone marrow regenerating itself. The next day Charlie said, "Mum, my bow and arrow are really hurting again."

10/12/07

From the beginning Mike and I talked about how one day we would like to give back to the Jimmy Fund Clinic and Dana-Farber and Children's Hospital. Since we don't have deep pockets, building a new research wing is unlikely. However, we have just been invited to join the Pediatric Patient Family Advisory Council.

This is a group of doctors, nurses, administrators, bereaved parents, parents of children who have completed treatment, and parents like Mike and me whose children are still in treatment. We attended our first meeting last month and it was very interesting. The main function of the council is to make the whole experience at JFC better.

Stuck in a Moment

One of my favorite songs is "Stuck in a Moment" by U2. It begins, "I am not afraid of anything in this world. There's nothing you can throw at me that I haven't already heard." I thought that was true until October 12, 2006. During the first month of Charlie's illness, we survived on adrenaline, fear, and the unending support of all of you. I do feel less scared now. I hope we never have to face anything else like this again, but if something does happen I know we can handle it.

Luke, I Am Your Father

During Charlie's last lumbar puncture (spinal tap), his nurse, Mary, said the recovery room nurse had a tough time waking him up from the anesthesia. Mary just happened by, and knowing Charlie's love of anything Star Wars, she whispered to him in a deep voice, "Luke, I am your father." Charlie opened his eyes and said, "Mary, do you even know what episode that is from?"

Wisdom from Our Poet Laureate

A few weeks ago Charlie said to me, "Mum, I feel really weird. The whole inside of me feels really angry, but the whole outside of me feels really happy. I am all confused."

12/08/08

The following words are the happiest I have ever written: CHARLIE IS CURED!

He received his last dose of chemo at home the day after Thanksgiving. We are thrilled beyond words but I am also feeling a ton of other emotions that I didn't really expect: happy and sad, numb and exhilarated, confused and focused, hopeful and fearful, calm and anxious, relieved and scared, anchored and adrift.

How do you thank the medical professionals who saved your child's life? We have lived under the watchful eyes of some of the best doctors and nurses in the world. Moving away from that security is a scary thing. And there is an ever-so-slim chance of relapse.

Looking back, I am amazed that we are all sane. I took my cues from Charlie. Even on his darkest, weakest days, he somehow mustered the strength to carry on. He is the bravest person I know.

Part 2: Relapse and Stem Cell Transplant

Charlie's cancer returns and he undergoes a stem cell transplant at Dana-Farber/Boston Children's Cancer and Blood Disorders Center. Charlie will need to spend several months in the hospital in preparation for the stem cell transplant and for a period of time after transplant.  

5/21/09

It is with the heaviest of hearts that we write to tell you our Charlie's leukemia has returned. Needless to say we are all – including his doctors – stunned. His new protocol will most likely include stronger drugs than he took the last time, and it may even entail a bone marrow transplant.

5/31/09

Charlie started treatment on May 23. His doctors worked very hard to get him into a clinical trial that includes a new experimental drug they are very optimistic about. The protocol includes three 36-day blocks of treatment.

After Charlie has completed all three blocks he will start the bone marrow transplant process. This begins with five consecutive days of full body radiation. If all goes well, he will have the transplant, then he will be in isolation in the hospital for four to six weeks. After discharge, he will be in isolation at home for six months to a year.

We have been teaching our boys how to play poker, and even as novices they realize we have been dealt a lousy hand.

6/20/09

Being in the hospital with Charlie for nearly five weeks is finally getting to me. At least Mike and I and Harry and Max get to go home, but home is a hollow and strange place. Every time I go in Charlie's bedroom or see his backpack hanging behind the kitchen door, I burst into tears.

Harry and Max were not bone marrow matches for Charlie, but the transplant team has found over 900 potential donors. They will cull the list to weed out all but the most perfect matches.

6/28/09

We have reached the end of the first chemo cycle, and Charlie has only gone into partial remission. Full remission is required for a transplant, so his doctors have decided to bring out the big guns and change his current protocol to one that is much more aggressive.

Lego Master

The staff at Children's have been telling Charlie he has done so much with Legos that he should have a show. Well, now it is official. When Mike and Charlie returned to the hospital after Charlie's first furlough, they found the following invitation waiting for them:

Please join us for a Lego Exhibition by Charlie Rider
Monday, June 29, 1 p.m. in the Resource Room 
Refreshments will be served

7/21/09

Today marks nine weeks to the day that Charlie was admitted to the hospital. The most important news is that he has gone into remission. Also, the transplant team found a donor who is a perfect match. He is a 27-year-old man from somewhere in the United States.

8/24/09

A big poster on Charlie's door reads "Happy Transplant Day" and it is adorned with stars and pictures of Legos. Charlie received his new bone marrow cells (also known as stem cells) right on schedule. The transplant took about four hours, and other than some nausea and fatigue, he is doing quite well.

It really hit me that a healthy stranger had checked himself into a hospital and suffered a few days of pain and discomfort in order to save my child. I wanted to hug him and tell him that I love him.

With all that Charlie has been through, getting his new cells was actually quite anti-climactic. The cells arrived in a bag (the same as what all blood products arrive in) and they went directly into his central line just like any other IV medication. As I am sure you can imagine, though, the process to get to the actual transplant is much more involved.

9/11/09

Nothing but Blue Skies Skin

One weird thing I wasn't expecting was the change in Charlie's appearance after the transplant. Except for a couple of rogue strands, all of his eyelashes and eyebrows had fallen out. His skin was a decidedly blue color and his eyes were freaky. His eyes can look brown, grey or green, depending on the time of day and/or his clothing. However, after the transplant they looked translucent. It was as though I could see into his soul.

Medical Ease

A "new normal" conversation I had with one of Charlie's nurses:

Nurse: "Charlie has been in a fair amount of pain today, so I think it is time to hook him up to a personal pump for morphine. Would you like him to get a continuous drip with that as well?"

Me: "No. I think we'll just start with the pump and perhaps order the drip later." We might as well be ordering bacon and eggs with a side of hash browns. I hate that I know this stuff.

9/22/09

Charlie's new bone marrow has engrafted, which means the new cells are taking hold. Of course there are still a lot of risks to face in the coming months, but this is a major step towards overall success.

9/25/09

CHARLIE IS HOME! He arrived at about 2 p.m. and immediately began playing with his brothers as though no time had passed. Charlie's return feels like a rebirth. We made so many preparations for his return, and we are exhausted. However, we are finally all together again and we couldn't be happier.

Part 3: Recovering from Stem Cell Transplant

Charlie returns home but remains in isolation for a full year as he recovers from a stem cell transplant. Because his body is very vulnerable to infection, his parents are given a long list of things he cannot do, such as go to indoor gatherings, eat in restaurants, or have friends over. 

10/26/09

On Being Home

When we go back to the Jimmy Fund Clinic for checkups we see Dr. Anu Narla, who has been Charlie's doctor since the beginning. For Charlie and Anu, it was love at first sight. We love Anu for so many reasons, but the most important is because of how hard she has worked to keep Charlie alive and because she is such a strong advocate for him. Even as she tearfully delivered the news to us that Charlie had relapsed, we were confident that she would leave no stone unturned in finding a new cure for him.

We have Anu to thank for something else. She sent Jorge Fernandez to us. Jorge is a psychosocial worker at Dana-Farber, and never was a person and a job more of a perfect fit. Jorge has helped us to put the impossibly scary into perspective and he calmed us down when we were really freaked out.

1/16/10

Every once in a while the isolation gets to me and I'll announce to Mike that I will be spending the next day he has off at the mall, by myself, for retail therapy. It is not the purchases I make that make me feel better (although that doesn't hurt), it is just getting out of the house and interacting with people who have no idea what we have been through. Being home alone with Charlie 24/7 has made me a little cuckoo.

Keep it in the Back of Your Mind

Back in October, when Charlie was hospitalized for an infection in his central catheter line, he was put on several antibiotics. One day, one of the doctors on duty was running through a list of possible side effects of the meds. When she finished she said, "That's just something to keep in the back of your mind." I sighed and said, "The back of my mind is getting full."

4/24/10

Just as the transplant itself was easier than we anticipated (not that I ever want to repeat it), the isolation period was also easier than we thought it would be. If Charlie wanted to play with friends, it had to be outside. During the first couple of months we kept the kids' friends at bay, but eventually it was like old times, and we had lots of boys running around in our yard – even in the dead of winter. When the kids got cold they would hang out in the garage and I would bring them thermoses of hot chocolate.

We also became experts at finding outdoor activities, even if it meant walking on the beach in February. We had outdoor birthday parties in November and March, thanks to our patio heaters, as well as Thanksgiving and Christmas cocktail parties on the patio. It is amazing the things you can do outside, year round.

8/8/10

Well, it's official! After a long year of isolation, Charlie no longer has any restrictions or precautions. He can now do whatever, go wherever, or eat whatever he wants (subject to parental approval, of course).

We celebrated by going out to dinner. We ate in a busy restaurant and Charlie ordered his first fountain drink in more than a year. Later we walked to a local bakery and ate cannolis, another formerly forbidden delight. Perhaps the best part about the end of isolation is that we can now have our friends and family in the house again. On Saturday morning all three boys called their friends and said, "Come on over."

10/12/10

It's hard to believe, but four years ago today Charlie was first diagnosed with cancer. He turned 8 last week, so for exactly half of his life he has been battling cancer or dealing with the repercussions of the various treatments. I am thrilled to report that Charlie is doing GREAT! To look at him you would never know the hell he has been through. He is happy, healthy, smart, and really enjoying life. He loves school, and friends, and baseball, and everything that 8-year-old boys are supposed to love.

Life's a Party

So, my dear friends, parting is such sweet sorrow. Writing these updates has been a lifeline for me, and I will miss sharing them with you. But I am grateful that there is no longer a need to keep you informed of our life with cancer. Instead I hope to stay in touch with you all "just because."

Part 4: Looking Back: The Rider Family's Cancer Journey

In this final installment, Caroline Rider reflects on Charlie's cancer journey, and the impact it has had on the family. Charlie’s cancer has remained in remission for the two years since coming home from his stem cell transplant. 

When I go back and read my own words about Charlie's experience, I wonder how we all survived. But survive we did. In fact, I would argue that we thrived.

I can't quite put my finger on it, but when your child gets diagnosed with a life-threatening disease, all of the important things come crisply into focus and the other things recede into the background.

Although it was very hard to learn Charlie had cancer, his experience the first time was good. He only spent 3 1/2 weeks in the hospital and he was a textbook case with very few setbacks. The relapse was much harder. This time, he spent six months in the hospital and had a lot of related problems. I used to wonder, how much more can his body take?

In the early days after diagnosis, we asked our doctors how Charlie got this disease. They said: Bad luck. Well, since that day, we have been very lucky and I try very hard to concentrate on that. Charlie is lucky because acute lymphoblastic leukemia (ALL) is the most common form of childhood cancer, so it gets a lot of attention and money. What about the children who have rare forms of cancer that don't get the same funding and attention? More than ever we are dedicated to the Jimmy Fund and Dana-Farber and all of the fabulous people who work there. We will continue to help raise money for them and work with them to help make cancer history.

Once while watching the Boston Marathon I thought, how cool to be an elite runner, leading the pack. Then I realized that Mike and I are part of an elite group of caregivers who run marathons every day in order to save our children.

Throughout this ordeal people asked us, "How do you do it? How do you keep moving forward and keep everything straight?" We didn't have a choice. Like most parents, we will do anything to save our children. It helps to have a great partner and a support group of friends and family.

Here are some tips for others in our shoes:

1. Choose a group of caregivers who will treat your child like he is their own and will fight tooth and nail to cure him.
2. Take help when it's offered. Be specific. Our neighbors mowed the lawn, trimmed the hedges, did errands, and brought us food.
3. Try to have fun. The Jimmy Fund Clinic has festivals and parties and offers free tickets to shows and games. Take advantage of these offerings, more for the rest of your family than for your sick child.

We were a family of five who took a turn we didn't expect. We'll never know where the other road would have gone, because we took this one. We met people who enriched our lives in ways we never could have imagined – caregivers, experts, and other families. As a family we love each other more, because we almost lost one of us.

Find out more about support programs and other resources for children and their families at Dana-Farber/Boston Children's Cancer and Blood Disorders Center.