Qarrtsiluni

I learned a new word today, seeing it written somewhere I was reading not once but twice. It spoke to my heart and I think God must have placed it there. Qarrtsiluni (pronounces kartsiloony) means “to sit together in darkness, often in anticipation.” It is an Inuit word, the language spoken by Eskimos in Alaska/Northern Canada/Greenland. The moment I saw this beautiful word and it’s meaning, it spoke to my heart. I was thinking about another Neuroblastoma mom all day today, Kaitlyn, mother of Lincoln, whom I have written about several times before. This family has been laid on my heart, perhaps like Charlotte has been laid on yours. And I was in qarrtsiluni today with her half a country away. Lincoln was recently sent home after scans revealing the black eye he developed was disease progression even after recent treatment. His parents were told to bring him home, call hospice, and make memories, to enjoy their time. He wanted a puppy with brown spots more then anything and so they got him one. They tried to make their peace with this unimaginable pain. And then the doctor called them last week saying a radiologist had a different read. That perhaps the scans showed a condition called vasculitis that could develop because of the specialized treatment he received to the spot on his skull. There was a glimmer of hope that his prognosis could be changed. And the doctor asked for them to come in for a more comprehensive work up  and scans to see exactly what was happening inside of Lincoln. And today, they had the MIBG scan, which detects Neuroblastoma, and are awaiting the results.

Qarrtsiluni. Waiting together in the darkness. Often in anticipation. I like to think in anticipation of the light. What a beautiful word and a beautiful way of being present in someone’s life. Because we often can’t fix it. We can’t take away someone’s pain or worry or sorrow. I guess we aren’t meant to but we can be in qarrtsiluni with them. And our presence does make a difference

I have thought a lot about Lincoln and his family lately. Not because his journey has been heartbreaking lately but actually the opposite. His mom inspires me. Her faith and view and ways she finds her words is something to behold. I know she draws it from Lincoln, and from God. And I thank all of you out there for lifting this family that we care about up at this time as they scan and wait and learn and hope.

Tomorrow, Charlotte starts round 3 of chemo. What we hope and pray is her last round of chemo ever. Sunday she came down with a fever and needed to go into Duke ER for us to follow the fever protocol of blood cultures and antibiotics and labs. Her counts were good and everything else checked out (including a chest X-Ray they added on and in which I initially opposed until they came to take her for it and I realized that my impatience was hung on wanting to go home since she wasn’t neutropenic and that they were just being thorough and taking extremely good care of our girl...cue deep breaths) but finally at 2 am we were discharged to come home! Not being admitted is a huge victory in our world! She was able to recover from a little fever virus at home! She bounced back quickly and today she got to go to school. She came home telling us all kinds of kindergarten news, happy as can be. Proud. Glowing.

After the next 5 days of outpatient chemo (same 2 chemotherapies as the previous round), she will recover and we will plan for scans. And we know you all will be sitting together with us, waiting in the darkness, anticipating. Qarrtsiluni. We appreciate your presence, walking along side of us, praying and sending positive thoughts and hopeful messages our way. We feel every single prayer and we believe after the darkness, we will find the light again.

Waiting in ER

Sweet baby during the long ER wait

Home to recover! Being home and not having to recover from a fever inpatient is a huge victory in our world