A Life Changing Diagnosis

"For you equipped me with strength for the battle; you made those who rise against me sink under me." Psalm 18:39

Have you ever sat in a doctor's office or hospital waiting for "the news?" You know what I am referring to; the news that you are so sure is going to be bad, but so hoping it turns out to be much better than anticipated. You wait anxiously, all the while your mind is wandering to dark places. Your palms are sweating, your heart is beating so loud it feels like it is going to explode. You try to think of other things, but your mind keeps going back to the "bad news" you are so sure the doctor is going to deliver to you. You turn to your spouse, your parent, or your friend hoping they will avert your thoughts. They try their best, but the topic seems to come back to the "news" or the "diagnosis" you are so desperately waiting to hear. During times like this, remember, HE gives strength to the weary. When we admit our need, GOD moves. Lean on him for he will not forsake you.

My last blog entry, my parents had taken Kalli and Bailee back to North Dakota, Mark and I remained in Mayo in Rochester with Justine. We stayed right in the hospital room with her. We only left her side to eat. Mark often had to be the referee between Justine and me as the quarters were a little too close for comfort. On August 19, 2013, Justine took an ambulance ride to the main Mayo Clinic in downtown Rochester where she saw a neuro-ophthalmologist as the doctors felt that her right eye also seemed to be a bit affected. The exam went well, and no additional problems were seen. Justine tried to remain optimistic but was getting frustrated as no definite diagnosis was being made for her symptoms. Unfortunately, I already had a gut feeling as to what her diagnosis was. I shared my feelings with Mark and again, we wept, but kept our feelings about a diagnosis from Justine.

Justine walking-assisted by Mark

On August 20, 2013, Justine was taken once again by ambulance to the main Mayo clinic downtown as the neuro-ophthalmologist decided she needed specialty pictures of her eyes. They made her ride in a stretcher, but on the way back she refused to lay on the stretcher and insisted she sit up in a chair in the ambulance. She also began extensive physical and occupational therapy. She was fitted for an AFO (Ankle Foot Orthotic) so it would stabilize her right ankle/lower leg. Justine was a trooper as we once again we were found waiting on the final MRI results so we could have a definitive diagnosis.

Justine in ambulance to main Mayo Clinic

Late afternoon of August 20, 2013, we received a diagnosis. It was the diagnosis that I had suspected, and Mark and I cried about earlier. Justine was diagnosed with Multiple Sclerosis, a demyelinating disease. The doctors wanted to label it as CIS or Clinically Isolated Syndrome since this was only her first episode. Justine's MRI had shown that she had 3 specific "lesions" on her brain, one being very significant that was causing most of her symptoms. The treatment was discussed with the three of us and to say this news was overwhelming and devastating, would be an understatement. A pediatric neurologist, who specialized in MS, was due to talk to us as soon as available. We knew the treatment would most likely be in the injection form, and she was not too thrilled about it. Every day she was getting stronger, but she still needed assistance to walk. The doctors and therapists said that she would likely get back to her baseline or at least close to it. They didn't feel that she would have any lasting effects, but they let us know that only time would determine long-term effects.

Justine did her best to remain in good spirits. She never once questioned what the doctors or therapists told her she needed to do to get stronger. She was determined to get her strength and independence back. On August 21st, 2013, she continued to participate in both occupational and physical therapy. Her AFO was made, and she was to wear it whenever she was up and walking as it would allow her independence. They had her work on navigating stairs and some baking. No official discharge date was set, but they were starting to make plans for discharge (contacting therapy in our hometown). The pediatric neurologist came in and discussed medication options and it was decided that Justine would go on the specialty medication for MS called Rebif. It was an injection that needed to be given 3 times per week. It was a strong medication used for MS and the doctor felt it was necessary due to her young age and severe "attack." It needed to be approved by our insurance company first, and we knew that could take a while. Justine continued to portray a positive attitude and she never once said, "Why me?" She may have thought it to herself, but we NEVER have heard her say it.

Justine with her OT and PT

August 22, 2013, the doctors decided Justine could be discharged. This was a day filled with a lot of doctor visits and phone calls made for follow-up appointments and medication education. It was a lot for Mark and me to take in as adults, yet Justine being only 15 years old. She continued to amaze us all with her progress. Doctors had anticipated a much longer hospital stay, and once again one of our girls proved them wrong. As of discharge day, she could move her right fingers a little more and her right leg was much improved, and she was able to walk independently if she wore her AFO. She was able to extend her right foot but was unable to flex it at all and she was only able to wiggle her big toe. My nephew Nathan came and picked the three of us up in Rochester and we went to my sister Sheila's house in Carver, MN for the night. We returned home on August 23, 2013.

Justine and Mark

August 26, 2013, Justine started physical therapy and occupational therapy in Carrington. Every day she got stronger. Her pure determination was amazing. She was disappointed that she couldn’t play volleyball, but the team made her feel involved and even had a shirt made for her. She slept a lot and the doctors told us this would happen as her body was healing. She missed the first 3 weeks of school, but they were so accommodating. When she did go back to school, she started half days and by October she worked her way up to full days. She needed assistance at school with her books and her classmates were so good to help her out. On September 8, 2013, she started her Rebif shots. We gave her these shots faithfully 3 times per week. The end of September we were back in Rochester for a recheck MRI and neurology appointment. No issues were seen, and we were told to return in 6 months. If only this were the end of this chapter, but this was only the beginning.

Justine at PT in Carrington