Caitlin's Page

Welcome to Caitlin's web page. We created this page to help keep family and friends updated on Caitlin's battle with Acute Lymphocytic Leukemia.

Caitlin was diagnosed with standard risk ALL on November 29, 2001. She was randomized to CCG 1991, standard treatment. She went into remission quickly and responded very well to treatment. She took her last dose of chemotherapy on February 6, 2004, one day after her 6th birthday.

Our first indication that something was wrong was in September 2001. She woke up on a Saturday morning saying that her left leg hurt so much that she couldn't walk. At the time we did not know if she was really in pain or if she just wanted to be carried. We carted her around that weekend and took her to see the partner of our family doctor on Monday. The doctor could not find anything wrong, but she suggested that that we go to the emergency room at Children's, where we ended up camped out for about 8 hours (little did we know that it would be the first of many long visits!) They took x-rays and drew blood and were unable to find much wrong. And, Caitlin was once again able to walk without collapsing in pain. A possible diagnosis was juvenile rheumetoid arthritis, and we made a follow-up visit to an orthopedist who said that we should just give her tylenol and keep an eye on it since the pain seemed to come and go.

Througout that fall, Caitlin was tired and grumpy, and she was no longer able to run up hills or walk around the block. We made one more visit to an orthopedist who referred us to an arthritis specialist.

On November 28 Caitlin had a fever and looked worse than I had ever seen her. I called our family doctor and told him I thought there was something seriously wrong with Caitlin, and he told us to take her to Children's and have her admitted so that they could do many different tests to get a diagnosis. I called Mitch at work and told him what was happening and frantically packed an overnight bag for Caitlin. We dropped Christopher off at a friend's house and went down to Children's. Caitlin had perked up by the time we got down there and I was feeling slightly relieved as we got Caitlin and Mitch settled into the room for the night. Caitlin was a little concerned about spending the night but she was handling everything really well. I said goodnight and headed off to pick up Christopher.

The next morning Mitch called around 7:30 and said that I needed to get down to Children's as soon as possible. I got Chris dressed, dropped him off with a friend and headed down. I had only been in Caitlin's room for a couple of minutes when our family doctor came in to tell us that the test results showed that Caitlin had leukemia. I think I had one of those moments where the world just stops. I knew at that moment that our lives would never be the same again.

This started a whilrwind of events, much of which is now a blur. My sister in law came and took care of Christopher; we signed what seemed like stacks of consent forms, received pages of information, and sat through a two hour meeting with doctors, nurses and a social worker where they explained everything in great detail. I tried hard to pay attention, but my head was spinning and I could not take in everything they were telling us. Fortunately, Mitch was much more clear headed and was able to help me figure things out later.

Caitlin had surgery to put an implantofix port in her chest. All of her IV chemotherapy and blood draws have happened through the port. She also started chemotherapy drugs by mouth. After one day of crushing the pills and trying to hide them in foods and juices that she didn't like, I said, "Caitlin, do you think you can just swallow them?" and SHE DID! That was such a relief; knowing that we would have not trouble getting the pills down.

She was released from the hospital after 4 days and our life with our new roommate, ALL, began. The first month was very hard on her. She took steroids every day which caused her gain weight and swell up so much that she could barely move. Then she had several doses of vincristine which left her unable to walk for a couple of weeks. In April and May 2002 she had a round of drugs that made her hair fall out and made her feel awful! Throughout the rest of chemotherapy she endured numerous spinal taps and took her pills every day (I think the record was 13 one evening). She also endured bone marrow aspirations and had many spinal taps.

Fortunately, this story has a happy ending. She responded well to treatment and went into remission right away. She is doing well in kindergarten. We are grateful to our family physician, Dr. John Heintz for believing us when we thought something was wrong with Caitlin, even though initial test results indicated otherwise. We are also grateful to the doctors, nurses and staff of Children's hospital, where Caitlin has received outstanding care.

Journal

Friday, December 31, 2004 9:13 PM CST

On Tuesday we went down to Children’s for Caitlin’s monthly check up. Our regular nurse practitioner, Diane, was out so we were scheduled to see the other NP, Carla. We got Caitlin’s blood drawn and vitals done in the first 15 minutes (very fast in hospital time). As we were heading back to the exam room to wait for Carla I was thinking, “We’ll be out of here in no time!” Now that we take Christopher down there with us I have to keep an eye on the clock. We are able to drop him off at the Clubhouse, which is free childcare for siblings. It is a wonderful place staffed by Child Life. He can stay for up to 90 minutes at a time so while I’m with Caitlin I’m constantly calculating how long we have before we have to pick him up. So, anyway, we were back in the room waiting for Carla and I’m thinking “one hour to go, plenty of time!” But then the minutes ticked by and Carla did not appear. After 30 more minutes of keeping Caitlin entertained in a small exam room I was thinking, “If she comes in right now we are still ok”. Caitlin had been whining about being hungry from the moment we arrived so I finally broke down and took her back out to the waiting area where the only thing in the machine she wanted was candy. While we were out there we saw Carla having an intense conversation with some parents. It brought back a few memories of me and Mitch sitting out there talking to Carla early in treatment when everything was so new and confusing. Anyway, Caitlin and I went back to the room and continued to wait. She had chosen peanut butter m and m’s, and she decided to play dreidel with them. She would spin them and when they stopped she would yell “gimel!” and pop one in her mouth. After 15 more minutes we saw Carla go rushing by and go in one of the treatment rooms. That’s where things like spinal taps and bone marrow aspirations take place. So at that point I knew that she was busy with someone who needed her more than we did. I also knew that it would be even longer before she would be able to see us and I was formulating plans to go and retrieve Chris from the Clubhouse. Just then a young doctor that we had never seen before appeared in the doorway. Caitlin does not like strangers so she refused to look at him or answer any of his questions. He was very nice, but since he was filling in at the last minute he had to go leafing through the chart to get up to speed. When he looked in her throat he said her tonsils were a little swollen so he did a rapid-strep. He also said that next month will be our one year off treatment checkup (hooray!) which means getting an EKG done. He checked off several things on the appointment card, and I have no idea what most of them mean! Should make for an exciting visit. So then I thought, “great, we’re all done, because we have to pick up Christopher NOW”, and he said, “Why don’t you wait here while I check with another doctor on Caitlin’s throat.” So then I figured that if they really wanted me to come and get Chris, they would have paged me. So the other doctor came in, checked her out, said that she was good to go, just keep a close eye on her in case her symptoms suddenly get worse. Then we gathered up all our stuff and I stopped to make the next appointment, then I was out in the waiting room trying to get her away from a TV show that I would usually never let her watch. So we scurried over to the clubhouse and as I was looking through the window waiting for them to come to the door, I didn’t see Christopher anywhere. The staff person opened the door saying, “We’ve been trying to page you” and there behind her was Christopher sound asleep on the floor. He never takes a nap so when he falls asleep like that it means that he is really not feeling well, and when he wakes up he’s often groggy and hysterical. So then I was thinking, “How am I going to get him and all our stuff all the way back to the parking garage?” The child life person came to my rescue with a wagon! I loaded him up and away we rolled. As we were going through the hallway Caitlin was yelling, “Chris! Can you hear me? Can you talk?” By the time we got back to the other part of the hospital he was wide awake enough to try and stand up in the wagon while it was moving. Later that afternoon I got the news that the rapid strep was negative and that her ANC was over 5,000 – an all time high.

The next day I was down at the family practitioner with both of them – Chris with an eye infection and Caitlin with a urinary tract infection. Chris has been complaining about a sore throat so he got a rapid strep done. I ended up with prescriptions for both of them, so we had to drop those off, and then we went back down to the hospital for Caitlin’s physical therapy, and then back to pick up the prescriptions. Chris has to do antibiotic eye drops four times a day for a week. There is nothing like having to put eye drops into a wiggly 4 year old who does NOT want them! Caitlin says that her antibiotic is making her tired and grumpy (and I concur!).

Hopefully they'll both be feeling great just in time for school to start on Monday!

Hospital Information:

Children's Hospital
700 Children's Drive
Columbus, OH

Links:

E-mail Author: sjhyde@iwaynet.net

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