The National Bone Marrow Transplant Link

03/15/2026

From our Caregivers Guide at nbmtLINK.org

Caregiving for a
Young Daughter
by Dr. Matthew J. DeYoung
Following being a caregiver for my young daughter, I was
never the same again. I did come through my caregiver trial a
better person with a stronger relationship with my daughter
and with God. One of the most positive things that happens
when a loved one is diagnosed is the crystallization of what is
truly most important in your life.
Our Cancer Journey
In 2010, I left a good job and a safe life in the suburbs of West Michigan. We packed
up everything we owned and moved our family of four to rural Tanzania. My girls
were ages two and four when we arrived in Africa.
In early December of 2010, my oldest daughter Lola was waiting expectantly for her
fifth birthday on New Year’s Eve. We had just treated her for malaria because she
exhibited low grade fevers and complained of bone pain in her wrist. After malaria
treatment, she started to feel better. She celebrated her birthday in rural Tanzania
where our access to health care was limited.
January 2011, Lola started to have regular occurrences of arm pain, fever and swollen
lymph nodes. We treated her for malaria for a second time, and she briefly felt better.
In the beginning of February, she was very sick, sleeping continuously and refusing to
walk because of bone pain. On February 12, we flew back to the United States and
learned that Lola had leukemia and we needed to start treatment immediately. I was
met with a flood of emotions.
hat was just the beginning of a six-year journey that involved:
• Central Nervous System (CNS) relapse after 2.5 years of treatment in 2013
• CNS Relapse after two years of aggressive treatment in 2015
• BMT of mismatched cord blood at University of Michigan Cancer Center
(now Michigan Medicine) in September of 2015
• Currently 15 years old and living cancer free in Belize
Trauma
The role of caregiver begins with a deep trauma. This caregiver trauma is unique
because you cannot deal with it right away; you need to be strong for your loved one
who just received a terrifying diagnosis.
The months and years following a transplant can be extraordinarily painful. The way
you think about time needs to become both long term, and very short term. When
the pain and anxiety become too much, I suggest you take things 15 minutes at a
time. When the short-term pain hurts, remember that life is long, and the chapters
are many.
Once the journey is completed, take the time to invest in therapy for all family
members, including yourself. No one leaves this journey unscathed.
Faith
The faith journey of a caregiver starts with grappling with the fact that your prayers
for healing and miracles may not be answered. Our journey was long and included the
pain of two separate relapses, each two years apart. We spent six years fighting for my
daughter’s life in the halls of the oncology wing of the hospital. To keep your faith in
this environment, you will have to fight for it.
It is so easy to grow angry with God, but God is a safe place to unpack your hurt
and questions. I have found on this journey that God’s promise of hope is the only
thing that gave me any comfort when things got rough. The halls of the bone marrow
transplant (BMT) and oncology units are full of unanswered prayers. Allow yourself
permission to yell, cry, and beg while you walk alongside your loved ones. The hardest
work you do from your hospital room is all mental. There is wisdom in clinging to
hope. Hope is one of the most beautiful promises of faith.
I found myself asking God “why” only hurt my faith journey. God does not need
to explain anything to us. The sooner you can make your peace with the trial God
allowed for your family, the sooner you can ask him for help in fighting. We endured
the pain of relapse twice; we praised God for his healing and cried out in agony when
we tried to make sense as the pain stretched out over six years instead of the two years
we prepared for mentally.
The work of wrestling with my faith was one of the most challenging parts of the
journey. The gospel I grew up with did not prepare me with how to deal with the
harsh reality of innocent children suffering and dying all around us in the hospital. I
had to find a way to love God while coming to grips with the fact that in his sovereign
power he allows suffering.
Changing Relationships
The caregiver role will bring challenges to all your relationships. I faced huge
changes to my relationships with my wife, friends, family, church, career,
and finances.
We juggled three other kids, tried to give them some semblance of normalcy and
focused attention, but this journey is also hard on siblings. Siblings often only
internalize the disproportionate amount of attention, toys and care the afflicted child
gets as part of the treatment. Our family is five years post cancer and there is still
a divide between the sibling who went through treatment and those who were left
behind. I know I must continue to invest extra time, love and words of affirmation
to the children I was forced to be apart from because of my role as our daughter’s
primary caregiver.
Primary Caregiver Role Following a BMT
I believe strongly that the role of primary caregiver is crucial in the bone marrow
transplant process. Unlike traditional cancer treatment, the bone marrow
transplant process brings you to new doctors, new treatments, and a more
individualized journey.
A caregiver needs to be able to provide consistency, positivity, and patience. When
you go through the transplant process, the whole family shifts to caregiver mode.
However, there is usually one person who bears the load of primary caregiver. I
was very fortunate to have a career that allowed me to work virtually from the hospital
room.
Life after BMT
Perhaps the most important lesson I learned after the BMT process was to not mourn
the things that cancer took away from my daughter. After six years of treatment, my
daughter entered into her teenage years knowing she would never drive, never have
children and never grow taller than 4 feet, 11 inches. This is a heavy cross to bear. Her
issues are attributed to the side effects of radiation and chemotherapy.
Although this is not usual, no one comes through this trial without some life-long
challenges. The rehabilitation and healing from this life-changing procedure take
significant time. We still struggle with knowing that that there will be permanent
effects of the chemo and radiation. It becomes part of a new normal. The only option
is to make peace with the fact that your loved one made it through the journey, and
who they are now is exactly who God intended them to be.
Remission creates a lot of false celebration in the world of cancer. Remission is crucial,
and deserves to be celebrated, but does not mean you have made it through. You’ll tell
friends and family that you finally beat cancer, but you’ll still need to help your loved
one regain life. Lots of appointments, sickness and emotional processing will fill your
time after treatment. It took almost a year for my daughter to get back to full strength.
One of the hardest things for me about being post-cancer is learning how to re-enter
life, and let the patient learn how to be independent. Children that go through cancer
treatment have a hard time adjusting to no longer being the star of the show, or the
focal point of all of the family’s energy.
Looking back, I cherish the concentrated amount of time I was able to spend with my
daughter during those years. I still go into a panic every time my daughter has a fever
or an ailment, and I still worry about her future. I also celebrate and cherish her life
even more because I watched her fight so hard to keep living. There is nothing that
compares to the pain and joy of the caregiver journey.

03/15/2026

What a story of hope!!!
https://www.aamds.org/patient-chronicles/shirley-o%E2%80%99brien?fbclid=IwdGRzaAQjrURjbGNrBCOsk2V4dG4DYWVtAjExAHNydGMGYXBwX2lkDDM1MDY4NTUzMTcyOAABHubprRveaQKefKwMjTgL57VZiCT7RYWzftvnk9vTZdLg75jdwCw_pQi6EJam_aem_ejFCOi9FxKYkmpCop1REUQ&sfnsn=mo

03/14/2026

03/13/2026

From our Caregivers Guide at https://www.nbmtlink.org/product/caregivers-guide-for-bone-marrowstem-cell-transplant/

Caregiving for a Husband
by Sharon Minton
At the end of 2011, my husband Rob accepted a job transfer
across the country. It was a welcome move, as we were happy
to be leaving the cold winters of Michigan for sunny Florida.
By that spring, Rob started to complain of an itchy rash that
broke out around his waist. We thought it might be a heat
rash, but it kept getting worse no matter what we did. He
visited many doctors over the course of the next year who
were unable to figure out his worsening symptoms. Rob’s
body began to swell from head to toe, his skin itched like
crazy and turned a reddish/purple color and would flake off until he was raw. He was
unable to perspire, and constantly felt cold even when it was 95o F outside. We finally
decided to set up an appointment with the dermatology department at Mayo Clinic/
Jacksonville; a 2½ hour drive from our home. There, he had dozens of skin biopsies
that proved inconclusive.
Meanwhile, I spent almost every waking moment researching each of Rob’s
symptoms by reading every medical publication available to me. Without medical
training, I looked up each term or word that I didn’t understand. I ended up finding
a very scary diagnosis that seemed to tick off exactly every symptom that he had.
It was an extraordinarily rare form of Cutaneous T-Cell Lymphoma called Sezary
Syndrome. I printed out everything that I could find and brought it with us to his
next appointment at Mayo Clinic. We were told that the chances of Rob having this
rare cancer was extremely slim since only one in one million people ever actually get
this type of cancer. In my research, I read that this Sezary Syndrome is very difficult
to diagnose and the most reliable test is a flow cytometry. I asked if they would please
run this test so we could rule it out. Several flow cytometry tests were performed
over the next nine months.
Rob’s symptoms were now becoming life threatening. He had several bouts of MRSA
and staph infections, and his kidneys were not able to flush all of the fluid buildup in
his body. His lymph nodes were swollen so he had an inguinal lymph node biopsy. A
week later, in early November of 2013 we received the results of both the lymph node biopsy and the latest flow cytometry; Rob was diagnosed with stage 4 Cutaneous
T-Cell Lymphoma/Sezary Syndrome. We were informed that he had a 25% chance
of living up to five years. Our family was devastated.
If it were not for my strong faith, I believe that I would have fallen apart. I had to trust
that God had a plan for us, and I was going to accept whatever it was. I prayed for
guidance. I am absolutely sure that each doctor we saw, website I found, and people
that we came into contact with along the way were answers to my prayers.
I knew that I could have never gone this through my own abilities. I sought out and
joined every online cancer group that related to Rob’s cancer from email groups,
CTCL Listserv, to Facebook groups. I also found that the Cutaneous Lymphoma
Foundation website (clfoundation.org) had patient stories, so I contacted a gentleman
whose medical story sounded exactly like Rob’s. This man had been diagnosed with
Sezary Syndrome in 2005 and had an Allogeneic Stem Cell Transplant in 2009.
Rob and I both ended up speaking with him via telephone and he was tremendously
helpful. His suggestion for us; get onto the bone marrow recipient registry while
doctors try to get Rob into a remission.
Since there is no cure for Sezary Syndrome and remissions from chemotherapy
treatments had shown to be temporary, an Allogeneic Stem Cell Transplant was
Rob’s best hope for long-term survival. We let the doctors know that was the path
we wanted to follow. We consulted with specialists from around the country. They
all agreed a transplant was Rob’s best option as his disease proved to be refractory.
As much as we had come to trust and love the doctors at Mayo Clinic, we decided to
switch to a medical team closer to home in Orlando since treatments would be several
days a week.
Rob’s only brother was tested to see if he was a human leukocyte antigen (HLA)
tissue match, but he was not. Rob was put on the bone marrow registry in January
of 2014. At the same time, his oncologist started him on a chemotherapy drug to
clear the cancer cells in his blood. We had trouble obtaining approval from our health
insurance company to cover this treatment. After going back and forth with them
several times and finally getting Rob’s oncologist to step in for us, they approved it.
Rob finished his chemotherapy treatments that May and was pronounced “in blood
remission.” In early July of 2014, we got a call letting us know that an eight out of ten
HLA match was found for Rob. Again, our prayers were answered!
Rob was almost ready for his allogeneic transplant, but he had to have one more
treatment to get rid of any remaining cancer cells in his skin. He had 30 grays of Total
Skin Electron Beam Radiation Therapy over a 1½ month period (a gray is a measure
of radiation). It caused him to lose all of his hair, but cleared his skin of any remaining
cancer cells. Two weeks later, we went up to the University of Florida in Gainesville
(where his transplant would take place) so Rob could go through several days of
extensive physical, dental and psychological exams to make sure that he was able to
go through the procedure. He had been working out as much as he could during his
treatments to stay in the best physical shape possible. In hindsight, that was the best
thing that he did to be ready for the transplant. We also had to make arrangements
for where we would live after he was released from the hospital. We couldn’t be more
than 30 minutes away for emergency purposes. We found a fully furnished apartment
to rent up the street from the hospital.
On October 2, 2014, we both moved into Rob’s room as he was admitted to the
seventh floor Bone Marrow Unit of Shands Cancer Hospital. He had a small surgery
to have the Hickman (Tri-fusion catheter) placed in his chest. This device would be
the means in which he’d receive all of the chemotherapies, fluids, blood transfusions,
platelets, and even the new stem cells. He was hooked up to this huge IV pole that
would become his constant companion until he left the hospital. We even gave it a
name: Medusa.
Rob began his first round of the chemo and drugs that would be given over the next
several days to wipe out his own immune system in preparation to except the new
donor stem cells. Some of these drugs made him quite sick. As awful as he felt, we
would make sure that he would get up out of bed and walk laps around the unit.
Getting exercise is necessary both physically and psychologically. He would also get
up each morning and shower and get fully dressed. We felt that was important to help
him feel more like a normal day and not a day to be sick in bed.
October 7 was day zero – transplant day! We had a “new birthday” party for Rob
in his room, complete with presents that friends and family sent along with special
letters of encouragement, balloons, and his favorite German Chocolate cake. Two of
our four children, my sister, and Rob’s brother were able to be there with me to help
celebrate and watch as the new donor stem cells were infused through Rob’s tri-fusion
catheter into his body. These healthy new donor cells would give Rob and our whole
family a renewed life together.
he days ahead would not be easy. Rob had to be monitored carefully. We were
grateful for his incredible team of doctors and nurses. They closely watched all of
his counts, blood pressure and temperature. He would get blood transfusions and
platelets. When he’d get a fever, he’d be taken for an x-ray to check for pneumonia.
This happened at all hours of the day or night.
Since Rob didn’t have much of an appetite and found the hospital food repulsive, I’d
run out to the store to pick up whatever sounded appealing to him, just so he would
eat. His diet was pretty restricted, so finding something he could eat that sounded
appetizing to him was a tricky task.
Seventeen days after Rob was admitted into the hospital, his medical team released
him. This was much earlier than we had expected. I believe that Rob’s positive attitude
and daily physical activity helped a lot. We were able to move into the apartment that
we had secured just up the street. I went over to the apartment a day ahead of Rob
arriving to completely clean and disinfect everything. I wiped every surface down
with a bleach solution, vacuumed all the carpeting, furniture and air vents and made
sure that there was a clean filter in the air conditioner/ furnace. Being in Florida, we
have to be aware of molds and fungus that are common.
It was crucial for Rob to be in a clean environment since his new immune system was
very delicate. I was really glad to be able to sleep in an environment where we weren’t
disturbed by sounds of medical monitors or nurses coming in throughout the night
to check Rob’s vitals, but I was nervous at the same time. Now it was completely
my responsibility for caring for him, for keeping him safe, checking his temperature
throughout the day and keeping him relatively germ free! I was taught to administer
Rob’s intravenous medication twice a day and to sterilize and flush his tri-fusion
catheter. We would take our daily walks to the hospital where we still spent hours
almost every day in the outpatient clinic of the Bone Marrow Unit. There Rob had to
get IV fluids, medications and blood work regularly.
Forty-six days had passed since Rob’s transplant and his doctor gave him a weekend
pass allowing us to travel the 2½ hour drive to go home! It was wonderful to see
family again. My sisters, my parents, our daughter and a couple of friends had been
taking shifts to stay with our 14-year-old son so he would be able to carry on with
school and everyday life while I was with Rob in Gainesville. We were very blessed
to have that help so I was able to completely concentrate on Rob and his recovery.
His health continued to progress over the next weeks. We would take short day tripsto interesting places around Gainesville. This was very therapeutic and helped us
appreciate the new lease on life together that both of us had been given. Rob would
still get very fatigued quite easily so I was careful not to push him to do too much.
On day 70, just over a week before Christmas, we were given the “all clear” to move
home. We were overjoyed. It was the BEST Christmas gift ever! Rob continued to
improve over the next several months. We celebrated milestones together as a family.
Day +100 is a turning point in the recovery process. This is when the greatest risk
for critical side effects has passed and engraftment is complete, so new blood cells
are being made. Rob had fully transformed from his former blood type of O+ to his
donor’s blood type of A+. I continued to keep him somewhat secluded from crowds
and especially anyone that had a sniffle or a cough. I made sure that he didn’t do
anything in the yard that involved touching the soil (a lot of germs and microbes live
there!) and limited his sun exposure. He continued his exercise routine every day by
working out at our clubhouse gym or walking. Patience, perseverance, and positivity
were all key factors in my husband’s recovery.
At seven months post-transplant, Rob had a very scary set back. He came down with
a sore throat, cough and fever. He was admitted to the hospital, but progressively
became worse and was transferred to the ICU with sepsis and pneumonia. I asked if
they would do a bronchoscopy to biopsy his lungs to check for GVHD. Fortunately,
there was a pulmonologist on staff that was familiar with bone marrow transplant
patients and agreed to do this. After being treated with several different antibiotics
and steroids, his condition still wasn’t improving so he was transported by ambulance
up to Gainesville to be readmitted to the Bone Marrow Unit.
The results of the bronchoscopy proved that Rob did not have GVHD, but instead
he had a fungal pneumonia called Aspergillosis. Aspergillus is a common mold or
fungus found indoors and out, and a mild breeze can cause it to become air borne.
Generally, a healthy person is unaffected by it, but it can cause serious illnesses when
someone with a weakened immune system inhales the fungal spores. Rob was treated
with IV antifungal meds and released after 18 days of hospitalization. He would have
to stay on oral antifungal meds for another six months.
At the beginning of our journey for Rob’s bone marrow transplant and recovery,
I created a private page to keep all of our family and friends up to date,
almost daily, on Rob’s status. I documented each day with pictures and videos. It
became a diary of sort. The many prayers and messages from everyone were such a
source of encouragement for both of us.
Today, we can look back at that page and know how incredibly blessed we
are to have been granted the experience for a renewed life that we have together. Rob
is almost seven years post-transplant and is in the best health of his life. He’s working,
running four miles a day, bikes, plays pickleball several times a week and goes fishing
almost every day. Rob was very fortunate to never have any issues with GVHD. We
are grateful every day to his wonderful donor and all of his doctors and the staff at
Shands Cancer Hospital.
One of the most important things that I did leading up to my husband’s transplant
was to line up help at home with tasks like child care, pet care, yard maintenance, and
getting my mail to me. This way, I was completely able to focus on Rob. It was also
important to have someone to be able and ready to step into my position as caregiver
temporarily so that I could take breaks for myself, too. I would go get my hair cut or
attend to some other business that needed to be taken care of outside of my caregiving
duties for my husband. I made lists of everything that I needed and schedules of who
was able to help and when. We were so grateful for everyone that helped things go so
smoothly.
I must admit that taking care of myself was not a priority during this time and in
hindsight, I should have made more time to do that. The most important thing for
me was reading my devotionals daily. Philippians 4 was my go-to chapter in the New
Testament throughout our journey. Philippians 4:8 says:
“Finally, brothers and sisters, whatever is true, whatever is noble, whatever is right,
whatever is pure, whatever is lovely, whatever is admirable, if anything is excellent or
praiseworthy, think about these things.”
Staying in God’s word and trusting that He was with us every moment was so
comforting and important in helping keep a positive mindset. I had no doubt that
He had guided us through it all.

03/10/2026

Elle Crofton was only 25 when she came to UT MD Anderson for myelodysplastic syndrome (MDS) treatment. Find out why she invited oncofertility specialist Terri Woodard, M.D., to her baby shower recently, almost 13 years after her cancer diagnosis.

03/09/2026

Download this free guide at this link today https://network.nmdp.org/-/media/project/nmdp/networkresourcecenter/pdfs/services-support/materials-catalog-2/materials-catalog-3/np23347_post-transplant-guide_2025-05-09_digital-pages.pdf?rev=19383608b9ee468a8154babb5585187c

03/07/2026

Here is another free download that could be very helpful for navigating life moving forward from transplant https://llsorg.widen.net/view/pdf/cdppznmaye/en-booklet-editable-adult-survivorship-ps119.pdf?t.download=true&u=swuzoq