Strength Through Sorrow: Jojo's Journey

As parents, we are all a little biased when it comes to our children. We have no doubt that their future is bright and that  they will live long, successful lives. You know this because the tiny human you helped create hit every milestone on time, made friends easily, used their manners and never got into any trouble. A dream come true for any parent.

But what if your child’s bright future was suddenly ripped away from her?  Your dreams and aspirations you had for your healthy 6 year old were replaced with a death sentence. 

I never imagined that it would be my little girl that would be given that death sentence. 

Johanna was your typical, free spirited 6-year-old. She loves unicorns, dinosaurs, the beach and the outdoors. She got good grades in school, and rarely found herself in trouble.  In the early months of 2015, I had began to notice something was off with my daughter. I was a stay a home mom,  so I recognized these issues immediately.  Her gait had looked a little off, her moods were up and down, and she seemed more tired than usual. I attributed her symptoms to several factors- Adjusting to her new sister, whom we welcomed 6 months prior,  still feeling the remnants of her 2nd bout of strep throat,  and lack of a good nights sleep. I told myself that it was just a phase and that she would be back to herself in no time. Weeks went by with no change. At this point, her fatigue had increased and she had began to lose weight. I took her to her pediatricians office, who immediately order lab work. She wanted to rule out any immune conditions, aka, cancer/leukemia. Thankfully, the test results came back normal, however, I still didn’t have an answer to my daughters worsening symptoms.

April 8th, 2015 I had just started a new job at an OBGYN’s office a month prior. We were struggling financially on my husbands income, so I knew going back to work was our only option. This day was nothing out of the ordinary.  I got the kids to school and daycare early, arrived to work on time and was enjoying my lunch break. Then, then office phone rings, “It’s for you Kristina. It’s the school nurse from your daughters school and said its an emergency”. My heart sank. I pick up the phone, and hear, “Hi Mrs. Stroup, Johanna had a petit mal seizure during class this morning. It lasted for about 30 mins, but she’s okay and never lost consciousness. We would like for you to come get her and take her to the ER”. I panicked. Thank God for her school and the amazing staff. They kept me calm throughout this entire ordeal.  Long story short, my boss at my new job would not let me leave. No, she did not physically detain me, but told me I would no longer have a job if I left. Most people think that’s an easy ultimatum. But when you desperately need to keep your job to stay afloat, that decision no longer becomes easy. I called my husband and updated him on what had happened, and he thankfully could leave work to take her to the hospital. 

She was admitted to Children’s National for 3 days for observation. We begged the neurologist to order an MRI or CT scan, given her other symptoms. They refused. A 24 hour EEG was done, which came back normal. No seizure activity. Diagnosis? ADHD.  We were told “There is nothing wrong with your daughters brain”, and sent on our way. No. just, no. I knew better. There is something wrong with my little girl, and ill be damned if I don’t find a doctor to fix her. I returned to work the following week, only to be fired from my position. Their reason? “It’s just not working out”. I was furious. It was very obvious that because I could not attend work during the 3 days my child was hospitalized, I was not the right fit for the job. I would soon realize that this was a blessing in disguise, and I was better off without them in the long run.

Fast forward to August 2015. After many, many doctors’ visits, and 7 weeks of behavioral therapy for the “ADHD” diagnosis, we ended up seeing a neurologist at the Kennedy Krieger Institute in Baltimore. The neurologist took my concerns and Johanna’s symptoms seriously, and ordered an MRI of her brain.  Finally, I was so relieved. We were going to get to the bottom of this! Johanna had her MRI on August 14, 2015.  On August 17, 2015 I received a phone call from her neurologist. I was actually a little anxious to hear the results, and begin a treatment plan. Whatever it was, it was fixable. 

“Hi Mrs. Stroup. Your daughters MRI was abnormal. Very abnormal. I am hesitant to tell you the suggesting diagnosis, because it can be misdiagnosed without a blood and urine test”. 

One moment, can you repeat that? Very abnormal? Just say what the hell it is lady, or I will come through that phone!

 

“Metachromatic Leukodystrophy”. 

 

Okay, so I still didn’t catch it. I heard “Meta” and “Leuko”. I was in too much shock to ask her to spell it. She then asked us to come to her office that Thursday for the blood and urine test. I felt defeated. I felt worthless. I didn’t know what the hell the diagnosis was, so I couldn’t even google it to prepare myself.  I cried hysterically for several days. We went and got the blood and urine test drawn, and then we had to wait TEN days for the results. Those 10 days felt like 5 years. I had so many mixed emotions. By this time, I had finally wrote down the name of the suggested diagnosis and researched my ass off.

“Terminal Neurodegenerative Condition for which there is no cure. Patients will lose the ability to walk, talk, eat, move their bowels, laugh, smile and eventually death occurs”.  That’s what I read on every single site I researched. The more I read, the more confused I got. On one day, I would have positive emotions-  There was no way my healthy 6 year old little girl had a terminal disease. Look at her, she’s running, jumping, shoving kit kats down her throat as fast as she can. How dare you suggest a terminal disease.  The next day, I would have a pity party- My daughters going to die. I’m going to have to bury my child. Why would God do this?

On August 27th, 2015, Johanna was officially diagnosed with Juvenile Metachromatic Leukodystrophy. My life flashed before my eyes.  I had taken so much for granted. I had taken advantage of having a healthy child. I felt so guilty. Yet, instead of throwing another pity party for myself, I consulted Dr. Google, and went to work. I searched for 2 hours for specialists in her disease, and by the grace of God, I found her. 

Her name was Dr. Maria Escolar and her clinic was located in Pittsburgh, PA at the Children’s Hospital of Pittsburgh, UPMC. I picked up the phone, and called immediately. The office was closed for the day, but I had left a message feeling a little defeated. By the next morning, I already had a missed call on my phone- It was Dr. Escolars office returning my call! I spoke to the program coordinator, Mary, and she confidently said that she thought Jojo would be a candidate for a stem cell transplant.  She scheduled our appointment in record time, having us arrive in Pittsburgh on 9/2/2015.

After two weeks of back and forth to Pittsburgh and multiple tests and scans, it was determined that Johanna was an excellent candidate for the transplant. My emotions began to gravitate towards hope and optimism. We then met with the transplant doctor, Dr. Mark, who explained every little detail of what we could expect through the transplant process. He gave us all the worst case scenarios, which I asked for. I wanted to prepare for the worst, but hope for the best. We were told she would probably not walk out of transplant, that during the 2 week conditioning phase of chemotherapy, that there was a high risk of disease progression. There were no guarantees, but this was her only chance of prolonging her life. There wasn’t a question of what to do next. I signed consent forms to proceed with the transplant. I had fought so hard for her to be diagnosed, I just wasn’t going to stop here. We were in this together. I was not going to let her down. 

A week and a half went by before we got the call that insurance had approved the transplant and that a match had been found. On September 21, 2015, my husband, Jojo and I were off to Pittsburgh. My heart was broken. My youngest daughter, Marley, was only 1 at the time. I knew living in a hospital for months was no place for a 1 year old. But my heart broke driving off without her. Deep down, it was what was best for her. For Johanna. She needed my full attention, and I couldn’t deny her of that.

The night before her admittance, I struggled with how to prepare Johanna for what was about to happen. I did not want to blind side her. She deserved to know the truth. I sat her down, and said, “Jojo, you have a cold in your brain. I know you can’t feel or see it, but all the tests that you have had done said that your brain is sick. So, we have to go live in Pittsburgh for a little while, so the doctors there can make that cold go away, and make you better. This will not be a fun trip. There will be times where you’re going to be scared, and Mommy will be scared too. But these are the best doctors in the world, and they’re going to make your cold in your brain go away”.

Her response brought me to tears: “Okay Mommy. I’ll be brave. You will be brave too”.

Oh my heart felt like it was being ripped to shreds. Yet, in that moment, I felt so proud to be this little girl’s mommy. Little did I know, in the upcoming months, she would show me what being brave is really all about.

Johanna was admitted October 1, 2015 following a procedure to put 2 central lines in her chest. We would refer to them as “tubies” from here on out. These tubies would be the access point of any and all medication needed. Johanna didn’t mind them at all. Two weeks flew by with many good days, and a few bad days. Before we knew it, it was transplant day. We call it her “re-birthday”. If this worked, it would slow down the progression of the disease in her brain, and keep her mentally and cognitively stable. However, it does not do much good for the peripheral nerve progression. Dr. Mark told us from the very beginning, “Make her walk everyday. Do not let her lay in that bed. Even on days she does not feel like moving, make her. This will keep her walking longer”. So every single day, through the mucositis, the tummy aches, the diarrhea, the vomiting, the fatigue, this girl got up and walked whenever I asked. When her physical, occupational and speech therapist would come for her session, she participated. She demonstrated pure strength and determination through her toughest and darkest moments.

That’s when I knew, we weren’t going down without a fight. 

She lost her hair, and lost some weight, but things progressed smoothly. Hospital staff became like family. They reminded me to take care of myself. That I needed to stay healthy to keep my daughter healthy. They brought me meals, and let me go shower. They cared for me as if I was family.  

Johanna was released from the hospital on 11/23/2015. She only spent 53 days in the hospital. Remember when they said she may not walk out of the hospital? Well, she did. She walked proudly out of that hospital. It was such an emotional day watching her do something we all take for granted. Everyone came to the floor, and put on a big celebration for her. They threw confetti, and had balloons and even had gifts for her. We were all so proud to watch her walk out of 9b.  We would spend the next 5 months living at the Ronald McDonald House attached to the hospital. Our days would be filled with clinic visits, blood draws, PT, OT, and other appointments. She was isolated from going outside of the hospital. But she never, ever complained.

My husband had to return to work on January 5th. We were fortunate enough to have him there from the beginning. Our other daughter, Marley, even stayed with us after Johanna was discharged from the hospital. We spent Halloween, Thanksgiving, Christmas and New Years away from our home. Away from our families. I was able to keep Marley with me when he left. She made our time here feel more “normal”. She was a piece of home I so desperately yearned for. My mother came and stayed with me for weeks at a time. I honestly don’t know what I would have done without her. Mary, the program coordinator, became my best friend and I confided in her for everything. 

The next 3 months flew by, and before we knew it,  it was discharge day. We were finally going home. On March 24, 2016, we said goodbye to the nurses, Dr. Mark, Dr. Escolar, Mary and the rest of the staff. We cried tears of happiness and tears of sadness. Happiness for Johanna beating all the odds stacked against her and finally being able to go home. And sadness because these people were now my family, and they saved my daughter’s life. Without them, I don’t know where Johanna would be. She surely wouldn’t be where she is today, 1 year after diagnosis.

She is still able to walk (slowly), and swing on her swing set. She was released to return to school this month, and is off all of her transplant medications as of 06/29/2016. She is truly thriving thanks to all of these people.

And I am still standing thanks to her.  She is my hero, my inspiration.

She encourages me to be a better person, mother, wife, daughter, granddaughter and friend. I often wonder about what life would be like had I listened to the other doctors when they said she was fine. My mind drifts back to that day occasionally. But then I look at my little warrior, and I’m reminded why God made me her mother. A mother’s intuition never fails, and this journey has proven that if you dig deep enough, you can find strength through sorrow, and overcome the impossible.


{About This Kick Ass Story}

This story was written and shared by Kristina Stroup - Mommy to the beautiful little kick ass Johanna Stroup. 

You can follow Jojo's journey here on Facebook