Lily’s story – Raising awareness about both leukemia and Down Syndrome

Posted October 18th, 2017 by Be The Match and filed in Patient Stories
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When three-year-old Lily LaMartina started limping last summer, her parents thought it might be due to the effects of Down syndrome, which Lily has. But when she stopped walking altogether, they knew something else was going on.

3-year-old Lily

Initially, her doctors thought she had a fracture, and then a possible bone infection. But more testing revealed that she had acute lymphoblastic leukemia (ALL). The disease causes a person’s bone marrow to make too many B-cell lymphoblasts, or immature white blood cells.

As Lily’s parents learned more about their daughter’s leukemia, they also discovered that people with Down syndrome are 20 times more likely to develop ALL.

Thankfully, Lily went into remission after getting chemotherapy, but she is still receiving treatments to hopefully prevent her leukemia from returning.

Lily’s first day of school

Her parents know that there is a good chance her treatments will keep Lily in remission for a long time. But if Lily does relapse, she would need a blood or marrow transplant (BMT).

With this possibility, her parents are committed to helping raise awareness about the importance of joining the Be The Match Registry®.

“When we were in the hospital, we met families with kids who had relapsed from cancer,” says Jay, Lily’s father. “We were all fighting the same battles. It was sad but, comforting knowing we were not alone.”

And while they are raising awareness about Be The Match through word of mouth and a very active Facebook presence, they are also spreading the word that having Down syndrome is a risk factor for developing ALL.

If you would like to join the registry on Lily’s behalf, please click here.

Learn more about ALL and BMT.

Cord blood transplant renews teen’s health – and perspective on life

Posted June 28th, 2013 by Be The Match and filed in News, Patient Stories
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Elizabeth’s story

Elizabeth FeyTeenagers are not always known for their sense of perspective. Elizabeth is the exception to the rule.

The source of Elizabeth’s perspective is cancer – specifically, acute lymphocytic leukemia (ALL), first diagnosed when she was 10 years old. Aggressive treatment put the disease in remission after a month, while Elizabeth continued active treatment for two-and-a-half years, pushing through the chemotherapy pills and check-ups while trying to “be a normal kid.” She was approaching the milestone of five years in remission – the point when she would be considered cured – when things started to change.

“It was winter. I had a bunch of colds and some swelling in my neck that my pediatrician thought was mono,” Elizabeth said. But her oncologist was wary and moved up her routine exam by a few days. “On the drive there, I kept telling myself this wasn’t going to be cancer again. But after we got there, I knew by how concerned my doctor was that it was back.

“At first, I was more mad about being sick than anything. Everything was on track – school, my friends – and I didn’t want to be sick. I was frustrated and sad. I didn’t think it was fair.”

Elizabeth’s mother, Maureen, said, “We were dumbfounded. Her doctors consulted with several top hospitals, and none had ever seen a recurrence after such a long remission.” Because of the recurrence, following the same treatment was not an option.

They decided that a marrow transplant was the best option for Elizabeth. As is often the case, Elizabeth’s only sibling was not a match, so her doctors decided to perform a dual-unit cord blood transplant.

Maureen prepared to be away from home for nearly three months while Elizabeth received two weeks of daily chemotherapy infusions and eight doses of total body radiation in preparation for transplant.

For Elizabeth, “It was mental prep. I just did it. I knew what I had to do. My mom told me that medicine only does half the work. When your mind gives up, your body gives up. So I had to be optimistic and get through it. I told myself, no matter what happens, stick it out. It’s for the best.”

Elizabeth’s transplant and recovery went without a hitch. In all, Elizabeth missed about a year of school, but completed class work with the dedication and support of her school and teachers, who developed plans that allowed her to work from home. When she returned to school midway through her junior year, she rejoined the track teams, and her senior year rejoined the tennis team and was elected class president. She recently celebrated both her high school graduation and the second anniversary of her transplant.

“I’m not happy I was sick, but it changed me,” Elizabeth said. “I have a new perspective on life. I knew there were people who had it worse than I did… Cancer can be seen as a blessing.”

Elizabeth is looking forward to this fall and the next phase of her life: college. “It’s been hitting me lately what I’ve been through. I did all that, I stayed in the moment,” she says. “I’m ready to move ahead!”

To the parents who decided to donate the cord blood that gave her another chance, she said, “I would definitely say thank you. I’d tell them how far I’ve come in two years, that it’s two years I might not have gotten. To help someone live and give them a better quality of life… it’s the greatest thing you can do. They probably did it because they’re nice people, but I would want them to understand that it affected more than just me: my friends, my family … they would all be different without me.”

Maureen says she has changed, too. “I try to live with more gratitude and acceptance,” she said. “I’ve learned never to dwell on things that might upset my day. They say you’re supposed to live for every second – that’s easy to say, but hard to do. You need to try and you’ve got to focus. Your whole life can change in a moment.”

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Keeping your relationship strong when your spouse is your caregiver

Posted February 5th, 2013 by Be The Match and filed in Patient Stories
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Wendy and Clark have a lot to celebrate these days – 25 years of marriage and Wendy’s upcoming 4th “new” birthday.
 
Clark was Wendy’s  primary caregiver as she battled ALL and MDS, and during her double cord transplant in the summer of 2009. As husband and wife, they are now back to enjoying hiking, spending time with friends and going to church.

Whether you are a patient or a caregiver, you know that going through the journey of a life-saving transplant affects your relationship with the other person, for better or worse.

Wendy and Clark say they are best friends and love spending time together. How did they manage the patient/caregiver dynamic as a married couple? How did they make it through years of chemotherapy  and a transplant to arrive at a relationship that is stronger than ever?
 
The patient: Wendy’s perspective
The hardest part about balancing the roles of patient and spouse was realizing how much my role as a wife changed.  Before transplant, I felt equal to my husband in every way and now I did not. I felt weak, less than. My husband absolutely did not make me feel that way – it was all me. However, when you can’t do the same things you used to do and need to be taken care of, it affects how you feel about yourself and the most important relationships in your life, like being a spouse.

I think the patient/caregiver dynamic will always be part of our lives to some extent, but it lessens more and more as time goes on. Clark will always be more protective over me and my health because of my diagnosis and transplant, but I’ve been able to manage all aspects of my health care by myself for three years now and it is no longer a daily issue. Clark would tell me over and over again my only job was to recover and get better.  In that sense, he made it very easy for me. He wasn’t expecting me to play the same role I had before I was diagnosed. However, there are times when, as a patient, you don’t want to be in that role – you want some sense of normalcy. You just want to be a husband or wife. That is why communication is very important.  You need to let your spouse know, in a loving way, of course, that you don’t want to feel like a patient all the time. At some point you want to start taking on the spouse role to feel normal and productive, and as a distraction from being a patient.

The biggest issue for me is understanding how to deal with my emotions. It is better than what it was early on, but he still has to help me out in that area on occasion (as well as seeing a counselor, occasionally). It’s important that we both feel like we can communicate freely. We each talk about our fears, frustrations, disappointments, anxieties, grieving. Each person can then appreciate what the other is going through. Many times, we are both feeling the same way. Then we can help each other and not feel so alone. In the process we became closer.

Another part of communication that few people are willing to talk about is sex. Things change after diagnosis and transplant. Talk to your doctor or a certified sex therapist (we found one who was excellent) if there are any issues in that area for either partner. That can strengthen a marriage greatly and enhance communication, self-worth and happiness.

There are a few strategies or ideas that have helped us keep our relationship strong. For example, we make time to do things that don’t revolve around anything medical; take a walk, watch a movie, play a game or go out with friends.  As equally important for us is prayer and worship time together. Slowly introduce tasks that the patient can do to contribute to the daily running of the household (paying bills, fixing dinner, doing laundry) so that the patient feels productive and needed. Consider asking friends and family to help with daily chores (grocery shopping, cleaning, medical appointments) so that there is more time for relationship time. Talk to each other frankly about needs and expectations.  Get outside help if you need it – from a counselor or pastor. 

I believe a relationship can’t help but change after an experience like this. For us, thankfully, it deepened and strengthened our relationship. We know what each is made of now. But it does change the dynamic. We view life differently now. We have experienced life changing drastically from one moment to the next – never to be the same. That changes a person and a relationship. We make and think of plans differently; there is always a caveat. But it also makes us appreciate each other and every moment we have together and every special occasion, even more. We try not to take anything for granted and be very grateful.

The most special part was seeing my husband take on roles that he really hadn’t before, and that just deepened my love for him. For a while, he had to do everything, and he did it all without complaining. He demonstrated his love and commitment to me by doing all the mundane (and extraordinary) things on a daily basis. He was living out the vows he had professed to me 20 years earlier – in sickness and health, good times and bad.

 “The line between caregiver and spouse would blur frequently. I would be flushing her picc line one minute and the next minute discussing what to get our dads for Father’s Day.”  
-Clark, caregiver

The caregiver: Clark’s perspective
The line between caregiver and spouse would blur frequently.  I would go from being a caregiver to being a spouse back to a caregiver in the same hour. It all depended on what needed to be done.  I would be flushing her picc line one minute and the next minute discussing what to get our dads for Father’s Day. It is hard to distinguish why you are doing or saying a particular thing.  Am I making dinner and doing the dishes as a spouse or a caregiver?

It was a little different for me because Wendy was diagnosed with ALL and two years before her transplant she went through HCVAD (a type of chemotherapy regimen) for eight months.  The chemo was eight rounds, which required hospitalizations for 5-10 days.  The caregiving role after the transplant was not that different from the caregiving role during HCVAD.  Of course, I had no idea what was ahead of me as a caregiver. I was totally unprepared. 

For me the hardest part of our dynamic was knowing when to be a caregiver and when to be a spouse.  There were times when my wife needed one over the other. Today, I would say my role as a caregiver decreases every day. From 2007-2009 I was an active caregiver, but now it is more passive. But I think it will always be part of our relationship.  When you are a caregiver for someone you have committed your life to it is hard to erase that thought pattern.  Although as time goes on it becomes less and less of a thought pattern.

Communication is an excellent way to maintain a healthy relationship.  Making time for each other is also very important.  We walk every day together and talk about what is going on in each other’s life.  Even though we now have a new normal we still have a normal life, we do the things we did before the transplant.

If I could say anything to other couples in this situation, I would tell them that I know it is hard but do not let the disease or transplant define who you are or who you are married to. This is just another bump in the road of life. I know it is a big bump but you can make it. There is a light at the end of the tunnel and it is not a train.  Life will get back to a new normal and the roles of caregiver and patient will fade with time.

This experience has caused us to deepen our relationship and love for each other and there is a sense of satisfaction knowing that we went through hell together and ended up closer than before.

Who is your caregiver? And in what ways did your relationship change? Share your story