A Brief History

(l to r) Ian, Ginger, Joey, Henry, Caid

On Christmas day 2011 Joey & Ginger Adams’s 14-month old twin boys were airlifted to Phoenix Children’s Hospital with advanced pneumonia. Days of anxiety and prayer followed as both babies were given oxygen, and Ian was put into intensive care. The following 24 hours were harrowing. Ian continued to have more respiratory difficulty and bloodwork continued to get worse, with every test coming back negative.

The night of December 27th, Ian’s doctor did an emergency intubation (placing him on a ventilator) which did not work to stabilize him. The doctors told the Adams that Ian should be placed on ECMO, a type of life support machine that bypasses the lungs and does the work of oxygenating the blood. As the days went on, Ian’s heart function began to be affected. By the grace of God, there was a doctor at the hospital who diagnosed Ian with Hemophagocytic Lymphohistiocytosis (an extremely rare and difficult to diagnose disease) and began treatment. Within days, Ian had improved enough to be taken off of the ECMO, and continued to make steady gains until his release on January 24th.

sweet gwen

Making this crisis even more disturbing: prior to the birth of the twins, Joey & Ginger had already been devastated by the loss of their 16-month old daughter, Gwen, on November 14th 2009 under startlingly similar circumstances.

Today there is a diagnosis of HLH for Ian and possibly his twin brother Henry. This would also explain why Gwen had died so suddenly in 2009. HLH in the genetic form usually strikes in infancy, and can be triggered by a virus or infection, and is rapidly fatal if not treated.

The only cure for HLH is a successful bone marrow transplant. 

Henry and Ian are out of the hospital, and Henry appears to be thriving. Ian, on the other hand, is still coping with treatments for his HLH.  He is on a high dose steroid treatment and periodic doses of chemotherapy. The family is preparing now to go ahead with the bone marrow transplant, most likely with Ian’s 6-year-old brother, Caid, as his donor.

**UPDATE: Ian received his bone marrow transplant on June 1st, 2012, his donor being Caid. These weeks right after the transplant, Ian will be most vunerable to infections, and other complications. Then once engraftment starts happening, which is Caid’s cells starting to work, they will be watching him for graft vs host disease, which is Caid’s immune system attacking Ian’s body/cells of all kinds because it recognizes Ian’s cells as foreign. This complication is minimized because they are siblings, and because they are both young. 

Caid is doing well, back to his normal routine, and very proud to have given his marrow to save his brother’s life! He also misses him very much and loves visiting him in the hospital. Henry also continues to thrive, and a close eye is being kept on his health as there is no way yet to know if he has HLH.

As for Ian, we are taking his progress one day at a time. We know we will likely wait and pray for months before we hope to see his full recovery; and until then consider every day with him as a precious gift to never be taken for granted.**

Despite insurance, the family has been financially burdened because of the radical measures taken to save Ian, and the current treatments and tests. All donations go from PayPal into a special account set up for the Adams family.

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the family in January, 2013