Daily Life of a Mother in Tirana: 2014

Wednesday, June 25, 2014

First Big Miracle

Before we left for the U.S., we had been told that the surgery had been scheduled to take place at the Nationwide Children's Hospital with a team of doctors coming over from The Ohio State University The James Cancer Center. When we got there on Wednesday, we received word that the Children's Hospital did not want to deal with us at all because we didn't have insurance. We were hoping to apply for Medicaid through Ohio and have our bills covered that way, but it wasn't certain that we would be accepted. Living in Albania, we didn't have any U.S. insurance plan. When we heard this, we really wondered what our Father God would do!! We had ALL come all that way only to be told that it wasn't going to happen. Our scheduled CAT scan at the Children's Hospital the day after we arrived didn't take place and instead we waited for our first appointment at the James Cancer Center with Dr. Matthew Old, who was to be Elsa's surgeon, not knowing what would happen. While we waited and rested, we tried to get our Medicaid application passed, with no success. That night, though, we got a call from our amazing coordinator over at the James who told us that she had made a call to someone high up at the Children's Hospital explaining who we were and why we should be allowed to get treated anyway, and we were accepted. That was a huge burden lifted. On Friday morning at the James, we had a great visit and felt confident that the doctor had a good plan and Elsa was in experienced hands.

The healing journey begins at the Grigorenkos

As I shared in my previous post, we were on faith headed to Ohio to seek treatment for Elsa's desmoid tumor which had recurred very rapidly after having it removed here in Albania. I was hoping to be able to write more when we were there, but I wasn't able. It really was an amazing journey of blessing all the way, and now we are back here in Tirana THANKFUL beyond words for healing and grace poured over us day by day. Elsa continues to do very well and look beautiful! The doctors did an amazing job of removing the tumor and God did an equally amazing job of filling in all the gaps so she didn't have to have reconstructive surgery. There are many, many stories from our time there, but I want to be faithful to write as much down as I can remember by way of encouraging myself and anyone who reads this blog that God is really is watching over the details of our lives, he can work in a sin-soaked world to effect much good and he can and does use each one of us as his hands and feet to bring the blessing.

The first hands and feet hand-picked by our Father that loved on us throughout our long time in the U.S. were that of Drs. Don and Margaret Grigorenko. Mrs. G as I like to still call her picked our tired gang up at the airport in Columbus and drove us to their home. Elsa, who had been a good traveler most of the trip was very unhappy and cried and cried, so Mr. G stopped at the first available McDonalds and we all got to experience this classic American restaurant together. The playground was amazing and Mrs. G took care of little Elsa, helping her up and down the slide over and over again. We all enjoyed ice cream cones dipped in chocolate. This was to be the first instance of Mrs. G lightening my load of mothering and in her characteristically loving, patient and good-humored way caring for each of my children in turn.

The Grigorenkos came into this story through my childhood friend Corrie, who is their oldest daughter. As soon as Corrie saw that we might be headed to Columbus, she volunteered her parents home to us. She then called her parents and asked them if it would be OK. ;) The Gs were warmly welcoming to us, had the perfect home out in the country with lots of space for our young rambunctious city slickers. What was beautiful for me was that I know and love the Gs from when I was young in Nepal - 20 years before. Mr G taught me all I needed to know about dos and typing tutor when I was in middle school. This was our first formal introduction to computers and it was a memorable experience. Mrs. G helped a lot with our girl guides troup, amongst other things. The Gs also had spent time in Dandeldhura in far west Nepal where I was as a very young child and so can relate to my stories of kaphel berry picking and the mud houses and the adventures getting there and back, fording rivers in big old buses when there weren't bridges, etc. I felt so, so at home and reconnected with parts of my history that I missed. What I didn't know, was that the Gs were now professors at Cedarville University and had a great interest in Anthropology and Linguistics - two of my favorite subjects. The G's library was like being in a candy shop for me!! I didn't know whether to read one of the many ethnographies, or the Nepali bible or hymnal or the far side comics, or the books on linguistics, or mission...on and on. I could have read just about every book in their house if I got the chance. The Gs had little reminders of Nepal all over and also made us some great Nepali (or Indian) curry on a couple occasions. The kids really loved their Nepali madal (drum) and we introduced them to some folk songs on it.

Elsa was thrilled to make a new friend in the Gs' dog Kimber or, "Timbers" as she would call him. He was the perfect dog for Elsa as she just wouldn't give him a break. She would follow him everywhere, including right into his crate, where she'd cuddle up to him. She would also try to hand feed him!! Our dog would definitely not have been so well-mannered about all this attention.

With Mrs. G at the Jame's Cancer Center waiting room. We were thankful too for the knowledge that the G's had of this hospital and caring for those with cancer.

Thursday, April 10, 2014

Desmoid tumor returns

A dear family friend gave me a bag 2 summers ago that has a verse on it that reminds me of a reality for each of us walking the Christian life, and ever so real to us now.

Proverbs 3:6 He shall direct your paths.

I write this as I continue to experience the many miracles of grace after finding out just weeks after the first surgery that the tumor had returned.

The first of many things I am thankful for was God's tangible presence during the MRI that confirmed our suspicion that the tumor was back. Our heavenly father heard and answered very specific requests after we ran into trouble with finding a vein and then the canula was defective, so couldn't stay in. I was at peace throughout despite all the unknowns.

The surgeon who we trusted from Greece also happened to be available within a couple days, so we scheduled a consult and likely surgery right away as that seemed our only option.

A day before the surgery a good friend of ours asked what it would take to get to the US for care and, knowing we had no insurance or money for travel, I said it would take a miracle. I also truly believed that we were in good hands in Albania and didn't want to spend resources beyond our wildest dreams just for the sake of going abroad.

A series of miracles later, including the planned surgery being called off at the last minute by Elsa spiking a high fever, and a wonderful providence of Elsa's tissue sample being carried to the US and personally delivered for testing by an oncologist to a major children's cancer research hospital, to the recourses coming together for us to make the trip, to the turn of events that took us away from where we had at first hoped we'd get treatment, and directed us to another hospital far more equipped to handle this delicate surgery in just the perfect part of the country where my parents have a home and we have many friends and family relatively close, we find ourselves unable to say with certainty what will happen tomorrow, but able to trust the master's grand plan and the pieces that make it. Throughout this journey we have seen God moving hearts to give and opening new doors immediately after closing doors we had wanted to walk through.

We are exceedingly thankful for the miracle of all 5 of us flying to a major research hospital in the US to have Elsa be cared for by a doctor with 30+ years treating desmoid tumors, hosted by Nepal missionary friends from 25 years ago in London and Ohio.

I think of the story of the hungry little boy who brought all his lunch to Jesus, only to be shocked and amazed to see those meager loaves and fish feed thousands of people. Family, friends, and even those I've never met have sacrificed their lunch and brought it to us in our moment of great need and it has indeed effected the miracle God had planned.

Looking to see His good hand move and direct and protect as we head into these next weeks of surgery and recovery.

A month ago I was really having my doubts about whether God was there and whether he was involved in the concerns of my life. Well, now I'm more convinced than ever that God is there and He is good even though the storms of life rage around us. He is indeed as the hymn goes "a shelter in the time of storm".

Sunday, March 30, 2014

Desmoid Tumor, round 1

I want to document our journey with this rare form of tumor that we first discovered last November. I want to trace and retrace the unexpected twists and turns of grace and provision and miraculous moving of mountains we have seen so far and expect to see more of as we move forward.

Last November a good friend of the family, our adopted brother Gazi was around for dinner and noticed a bump on Elsa's nose. I had noticed something not right myself a couple days before that but had dismissed it thinking it was just a bit of extra baby fat. We moved forward to ask our family physicians what it might be and asked doctors in the US too. Most seemed to think it was a cyst that if on an adult could be taken care of in the clinic. We went on to the main hospital to see what they could do and they called for an MRI.

Elsa had to be drugged to sleep for the procedure and she remained under the influence (sleepy or seemingly drunk) 24 hours at least. The results were that it was likely a non-malignant tumor that would involve a complicated surgery because it was in Elsa's maxillary sinus.

We went back to the main hospital for advice and we were directed to go right away for a biopsy by one doctor and told by another they didn't want to touch the case. In hindsight, the biopsy probably would have been wise, but we were afraid of Elsa being cut open in a hurry and by someone who didn't know what to do with such a small child. We elected to try to find the best surgeon we could to remove the tumor.

A couple of weeks later we found ourselves waiting for the recommendation of a maxillo-facial surgeon at the Italian private hospital before heading off to consult with another maxillo-facial surgeon at the Greek hospital. It became abundantly clear where we were going to be better cared for when we got to the Greek Hospital and met their Greek surgeon who flies in for surgeries every few weeks. Dr Lazarou was someone we felt comfortable with right away and we got Elsa ready for surgery that afternoon.

The surgery was over quickly and Elsa recovered amazingly fast. We went home relieved, yet knowing that our fight wouldn't be over till a biopsy was run on the tissue samples. Within a month I think we had the official word that the tumor was aggressive desmoid fibromatosis which was so rare no-one really knows a standard way to handle this, but the literature had 10 cases mentioned in total, for which surgical removal of the tumor was sufficient in most cases so we felt at peace.

Saturday, March 29, 2014

Our new adventure with Elsa

This is the first time that this Tirana mama has blogged about Elsa. It's been a couple years since I last posted and Daniel and Abby have grown and we have two new members in our household. Nik's father known as 'babi' to us and 'gjyshi' to the children came to live with us when Nik's mother passed away two years ago. Two months after that little Elsa was born and has been a great source of hope and joy.

We have been sent out on a new adventure lately seeking for a cure for a rather nasty tumor that we noticed on Elsa's nose last fall. I want to document on this blog how I see God doing only things He could do. We have seen him work in amazing ways already and are expecting even greater things.