Adulthood on hold
Matt was on his way to adulthood. He had just graduated from college, was working at a bookstore, considering law school and was enjoying life with his girlfriend, Cori. That’s when he got the news that changed everything. He had cancer and needed a transplant. Suddenly, life as he knew it was put on hold.
“The world was in front of me. You go from being a carefree 20-something, to thinking you might not make it the next two years.”
In an instant, Matt’s plans for the future changed. Instead of hanging out with friends, he was living with and relying on his mom. He and Cori were spending more time as patient/caregiver than as boyfriend/girlfriend. “We used to spend our weekends going out with friends. Instead, we were at home and she was cleaning my port. It was hard to accept that this was my new reality.” Matt said.
Finding new ways to connect
During Matt’s treatment, his life was consumed with medical appointments and procedures. His friends were enjoying their lives and moving on. “I couldn’t relate to them anymore and I lost many friends. That was isolating.”
Matt had to find new ways to connect with people who could understand what he was going through. He started reaching out to others through adolescent and young adult (AYA) support groups where he found others he could relate to. Without having to explain, they understood his experience.
“Oregon Health & Science University (where he received his transplant) has a great AYA program. I was fortunate that my doctor was so involved in the AYA cancer community. He helped me connect with others like me, and that was extremely helpful. Participating in activities like the river rafting trip was really important for my recovery. Not just physically, but being able to find your new normal–finding fellow survivors who have gone through similar things–is a way to kind of regain your sanity,” Matt said.
Matt’s advice: “It can be lonely, but you are not alone. Find others in the same place as you. Find new friends who understand your story.”
Reclaiming his adulthood
Today, Matt and Cori (now his wife) are enjoying their 30s. They spend time going to movies and meeting friends for dinner. He says the transplant experience made him see things differently. “It forced me to grow-up and offered a perspective you can’t buy. So I think I have an appreciation for my life and just everything that encompasses that is really priceless.”
Kayla was a senior in high school having fun with her friends and planning her future when she got sick. She was thankful for the gifts of love and support she received from her family, but she was missing something: her friends. She had many friends, but they didn’t stay by her side during transplant. “I would pick up my phone to find someone to call. There was no one. It would have been nice to have some friends to lean on,” she says.
“My mom was there to hold my hand, which made me feel secure. My cousin prayed for me constantly, made me laugh even when I was exhausted, and kept my spirits up. My pastor’s wife kept me wanting to fight, even when I was tired and down. The nurses also made me feel like they really cared if I survived. Their words of encouragement helped me to understand what was happening to me and what to expect during my treatment,” Kayla says.
Finding peer support
Kayla found peer support through social media. Through Facebook pages like Be The Match Patients Connect and Insights e-community, she found other patients she could relate to and who understood what she’s been through.
Kayla’s advice: “You are not alone. Reach out. Try to contact other patients. It’s helpful to talk with others who’ve been through transplant. They can relate because they’ve been there.”
The new me
“I just recently started nursing school in January and completed my first semester with straight A’s. Being a patient has motivated me to want to be a nurse because I will truly understand exactly how the patient is feeling. I will be a bone marrow transplant nurse in 2015! If I hadn’t gotten sick and gone through transplant, I would have never gone to nursing school. It’s amazing how things seem so broken for so long when you’re sick, but if you just hang in there, all of the broken pieces come together into something bigger and better than I could have ever dreamed of. I am well on my way to making a difference in the lives of future transplant patients.”
“Transplant changed me completely,” she says. “I am slowly finding the ‘new me’ and realizing I am in a different place in my life now.”
Join Kayla on the Insights e-community. Start a discussion that matters to you.
Social support: tips from Insights e-community
It can be hard for others to see someone they care about go through something so difficult. You may find that some friends will distance themselves, while others are with you every step of the way. Both are normal responses to a stressful situation. Find ways to communicate openly and honestly with your friends.
I kept a notebook in my purse for appointments, and kept a log of what medications needed to be changed, when they started, when they stopped, side effects, etc. I still keep a notebook with me at all times!
Kristin, transplant recipient
You need someone with you taking notes, asking questions and interpreting answers. Bring a binder with you and take notes. Create a spreadsheet for medicines and bring it to all appointments. Create a daily pill box and a system because you are on a lot of pills and it’s difficult to manage. Get a binder to keep records of your blood counts, and know what different blood tests mean. This can help you indentify when you are not feeling well and why.
Greg, transplant recipient
I started a medical journal for my husband when he was diagnosed. It was an invaluable tool as we moved through transplant, as I could go back to locate answers needed.
Stay connected and organized
I suppose the primary thing is having a top-notch caregiver! I just couldn’t manage it on my own. My wife is a very organized person and helped me manage everything. Second, is being connected. My transplant center’s website summarizes appointments, latest labs, direct emails to doctors, etc. I also signed up for CaringBridge®, which was very helpful. It’s a website where you can journal as often as desired. It can alert people of new updates so we do not have to manage 25 phone calls daily. Folks mean well, but repeating the same story can be wearing. Friends and loved ones can just click on your website and see how you are doing. They can respond to your entry and you can read their reply and respond, or not, in your own time. Very helpful.
Stuart, transplant recipient
RxmindMe is a great app for medications, especially post-transplant. I love it.
Lisa, transplant recipient
I used the My Med Schedule® app for all of the medications that my young son had post-transplant. It was really a great relief to have a reminder and a place to check every time I gave him any medication.
How do you stay organized after transplant? Share your tips and suggestions on our blog or check out our Patients Connect Facebook page to see more ideas from other patients and caregivers on this and many other topics.
Hospital teacher Sarah Steinke, M.Ed., M.A., at Cincinnati Children’s Hospital Medical Center answers questions that she has received from parents of pediatric transplant patients about Individualized Education Programs (IEP) and 504 plans.
What is an Individualized Education Program (IEP) and how can it help my child?
Because of your child’s transplant, they meet the definition of having a medical disability that affects their ability to attend school and complete schoolwork like their peers. This makes your child eligible for an IEP. An IEP is an individualized education plan based on your child’s strengths and needs. A team including you and your child’s teacher will make annual educational goals for your child and plans for measuring these goals. Your child’s school will also need a written plan in the form of an IEP that states his/her needs for a different learning environment, such as a hospital school or homebound instruction – where teachers or tutors come to the child’s home.
What is a 504 plan and how can it help my child?
A 504 plan is based on civil rights law (Section 504 of the Rehabilitation Act of 1973) that provides an opportunity for equal access to education. It protects against discrimination because of a mental or physical disability and allows for reasonable accommodations. Children undergoing a bone marrow transplant will miss a significant amount of school that will make it difficult to keep up with school work. Examples of accommodations a 504 plan can provide to your child include extra time on tests and assignments, a copy of notes, preferential seating, an extra set of textbooks at home and extra bathroom breaks. The process for eligibility does not require a formal request, but you need to work with the child’s school to make their needs known.
An IEP and 504 plan sound similar. How do I decide which is right for my child?
If small adjustments will provide enough support for your child to succeed in school, a 504 plan is a good option. For example, if your child is able to do well with extra time on tests, copies of notes from the teacher, an extra set of books at home to avoid carrying a heavy load, and any other accommodations his/her school will provide, then your child does not need an IEP. If your child has trouble keeping track of assignments or taking notes, gets overwhelmed often and his/her grades are suffering, then your child would benefit from an IEP. Private schools do not have to provide or follow IEPs or 504 plans unless they receive federal funding. However, many private schools will meet the needs of your child by offering similar plans. In college, special accommodations are arranged through the disability services office.
If my child needs an IEP, what are the first steps?
A parent can request that their child be evaluated for special services at any time. It is best to put this request in writing to a school administrator (you can also deliver it in person). After you have made a formal request, the school will respond. Then, a school psychologist will make an assessment. After that, the IEP meeting takes place with you and the IEP team and the school will determine if your child is eligible for an IEP.
Where can I go for help?
Many hospitals have programs that can help with school communication and re-entry needs and are resources for parents and students needing either an IEP or 504 plan.
Following transplant, my son Joe had low energy and suffered from fatigue. He could not focus for long periods of time and needed to build up his physical strength. Also, his immune system was compromised and he had to go into the BMT clinic frequently for doctor appointments.
Joe had homebound instruction during the second half of 9th grade and an IEP for 10th grade. For his IEP, Joe was provided longer times on tests, extended deadlines for completing assignments, and shortened homework assignments as mastery was shown. He could also listen to books on tape. He could leave class five minutes early so he didn’t get bumped in the hallway and so he had enough time to get to his locker and the next class. Joe was able to do his physical education requirements through a home activity log since he wouldn’t be able to keep up in a regular gym class. He also took an independent study class to meet a graduation requirement.
Joe graduated from high school on time and has since graduated from St. John’s University with a degree in Business Management in May 2012. In June he landed his first full time position with a marketing company in the Twin Cities.
My advice is to ask the school about any special services that may be available. Be persistent and be frank about what your child is struggling with. The letter from our BMT doctor was more than a page long and it really communicated how long and difficult the recovery can be. This gave credence to what we were telling them.
For additional resources, check out:
Be The Match
Guy took his commitment to the registry just as seriously as he took his friendship. In 2004, he donated marrow to save the life of a young man he didn’t know. “I gave out of the original intent I joined for—that was for a friend of mine,” Guy said.
Five years later, he met Mark Schuh, the young man whose life he’d saved.
One of those members, Lori Groen, was there to give Jason the chance to grow up. Because of her marrow donation, he’s alive to tell his story today.