Joy's Journey - The Beginning

     Last week I received a phone call from my team leaders that my namesake had a tumor in her eye.  I'm not sure if you know or remember, but in April a baby girl was born and the parents wanted me to name the baby.  Karen means "pure" and since their first daughter was called "Divine Grace", I found it very fitting to name this baby "Pure Joy".  Well, the doctors in Soroti said that Joy had cancer in the eye and they wanted to remove the eye the very next day and send it to Kampala.  My team leaders called me one morning to ask if I was free the following week.  They/we thought it would be better to take Joy to Kampala, rather than her eye.  So on Sunday afternoon, the parents met me in Mbale (where I had been camping for two days) and we began our journey south to Kampala.
     Sunday night we settled into the guest house and then first thing Monday morning we walked over to the International Hospital of Kampala (IHK).
 

At IHK the doctor quickly decided that we needed to see a proper eye doctor, so within moments we were given the name of a great doctor and sent off to Mengo Hospital.  The line ups were long and we could have spent over 3 hours in the waiting room, but because we had  consultation form, we were bumped straight to the doctors office.  The doctor said we needed to be very concerned.  Joy definitely had retinoblastoma.  He did have good news though.  There is a hospital in Mbarara, some four hours away by bus, that we should immediately go to, because it is the only place in all of East Africa that has treatment for this eye cancer.  AND... it happens to be that this is the week for the treatments, which is run once a week.  The Mengo doctor called ahead to Ruharo Eye Centre and the doctor said he would wait for us. 

In a daze, we went back to the guest house and began our journey to Mbarara.  I called my Sikh friends (my good friends who moved away from Soroti last fall) and they were so excited that I was coming to Mbarara.  After a 4.5 hour wait at the bus park, we finally traveled 240 km to Mbarara, where we were met by my friends.  They arranged for a taxi for me to take Joy and family to the hospital.  The German doctor had been communicating with us throughout the day, and they were getting a hostel room ready for the family so that Joy could have surgery the next morning.

I stayed with my sweet friends at the Sikh temple.

 

Closing the doors of the temple, I felt like Maria (Julie Andrews)
 being locked into the Abby at night.

     Organizing with the nurses, we began pre-surgery checkups and were informed of the process. It was really tough to watch Joy being carried into surgery, but we went outside to pray and talk.  The grounds of the hospital are very pretty and the staff is so friendly.  The eye clinic is sponsored by the German government, the Lion's Club and the Christian Blind misson.  There are no costs for children who struggle with Retinoblastoma because the program is part of a German study for this kind of eye cancer.  We were shocked that the surgery, chemo, and medicines were all free.  Praise the Lord.
     Around 1:30 pm we were called into surgery and we found a very difficult scene.  Sam, the father, needed to sit down after seeing his daughter, her very dilated eye, and hearing the doctor's words.  They showed us her eye, filled wall to wall with cancer.  If the doctors had removed her eye without chemotherapy reduction, there is a 50% chance that she would be alive in just a few months.  The doctor said that because the cancer was so aggressive, and had already caused Joy to go blind in the right eye, they would still have to remove the eye, but not until 2 or 3 rounds of chemo had been administered.  Just to make sure the brain or optical nerve are also not affected.  The doctor said we had much need to be worried and concerned and he showed us pictures with children who were given plastic eyes.  Thankfully Joy's left eye is cancer free and perfectly fine.  We spent the rest of the day with a groggy girl who was trying to wake up from the anesthetic.

 

The following day chemotherapy reduction began. Joy is definitely a fighter. I had to do a full restraint on a 9 month old just to get the IV, along with the mother. Then there was 6 hours of entertaining her while she was hooked up to chemo.

 

 

 

 

Esther's best line:  I wish this was a leaking jerry can,
the water would have been finished long time.  But now
we still have one hour to wait for IV drip.

While waiting for the chemotherapy to finish, Sam, Esther and I created a praise list:

• A ride from a team-mate (Beckie) to Jinja, part of the journey to Kampala
• IHK - didn't waste time, sent us straight to Mengo hospital
• Andonai - the guest house, gave us a room discount and are praying for us
• Food was availabe when we arrived at Adonai the first night
• Three seats together on both the taxi and bus rides that we took
• Indian friends in Mbarara arranged a taxi for us to the hospital
• Dr. Wadell organized the hospital hostel for Sam and Esther
• I had a lovely room at the Sikh temple
• An overwhelming sense of peace
• Doctors were very clear in the process
• Joy's left eye is perfectly OK!!
• Doctors did not remove the eye in Soroti
• Another foreigner, from Colorado, spent time praying with us after the surgery
• Many testimonies were shared with other parents of children who have retinal blastoma
• A private room in the ward
• Indian food!
• Friends praying around the world
• Ruharo eye centre
• I could help my friend Raji also see an eye doctor at the clinic... since I knew the system.  :)
• Colorado churches called to say they were praying for us.
• Joy is a fighter
• People in the west are praying for us
• Unbelievably strong parents
• A time of worship in the rooms
• A decent night after chemo treatments.  Nurses thought it would be much worse.
• God is Awesome!