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
Thursday, August 18, 2011
Trip to the country
The MOUNTAINS
The PEOPLE
The people, and in particular the woman we met in Afrim and Genci's family in Zerqan were to be admired. They were strong, hospitable, cheerful and never complained. They cooked everything from scratch and cared for their cow, donkey and chickens - not to mention their men and children so faithfully. They made the most wonderful food for us and even fed us two of their family chickens for a special meal. They had gardens, chickens, about 17 beehives, a donkey and a cow to care for and yet their house was sparkling! They made the most wonderful bread every day and even a very light cornbread that I want to get the recipe for. I was impressed with the depth of understanding and the high level of education that these ladies had even as they completed the most basic of household tasks. It was a joy to share community and cook with them and have conversation with them over the time we were there.
I loved the sense of community and how everyone in the family seemed to know what work to get on with alone or in a group, and then all would gather around to share a hearty meal.
The FOOD
Fabulous!! What I was impressed with the most was the many uses of milk and what a treasure a cow is, yet how much work goes into caring for just one cow. The matriarch of the family, Afrim's mother, seemed to be the most tied to the care of this cow. She would walk the cow to pasture and home again twice a day - the trip to pasture and back taking an hour at least. She would milk the cow in the morning and afternoon. The patriarch, Afrim's father, got up early at 4 am to go and cut fresh morning grass for the cow. When I went down to the barn to see the animals with the children I felt so good for this cow as she munched happily on fresh cut green grass. I was also so happy to see that the calf that she has was allowed to nurse and took half of her milk supply. My children got used to the taste of "cow milk" rather than UHT or pasturized milk - served piping hot. They loved the milk curds and the yoghurt that was prepared from the milk and I adored the clarified butter in so many of the foods that was served. The smell of warm ghee overwhelmingly reminds me of the village and great food in Nepal.
While I was there, I was trained in the art of rolling out byrek dough. This is an important skill that all young brides should already know, but I hadn't learned yet. I felt like I was getting the hang of it, but know I have a long way to go to churn out good byrek like the bride of that household did!
The FARM
This was a mini-farm in a sense. There were gardens and fruit trees and chickens and a cow and a donkey, bees and a dog and my kids loved interacting with all this. Abby really enjoyed picking plums and stuffing her cheeks with them and Daniel especially loved running around after the dog and just exploring the backyard. I think the city kids quite took to country living!! :) It warmed my heart to enjoy it along with them as I really think of myself as a country kid even though I've lived the majority of my life in the city.
I was hoping to include more pictures but my technical skills aren't up to it so I'll just post a link to those who are interested in viewing pictures of our little trip.
https://picasaweb.google.com/Lizzygrezda/TripToZerqanSummer2011?authkey=Gv1sRgCIyGrv6AgNbBUg