The Beginning

Our world was turned upside down Friday May 1st.

How it began.. Emerson and I had caught a nasty virus at the start of April. Mine lasted 2weeks but his never went away. He was later diagnosed with pneumonia and put on antibiotics. After a repeat cxr his pneumonia had improved but not resolved so our family physician suggested we take him to children's hospital to get looked at. Thursday afternoon we were looked at in ER. We had blood work drawn that showed Emersons neutrophil level to be zero which was worrisome. They changed our antibiotic and sent us home adding that if he spiked a fever to bring him in ASAP. Overnight he spiked a fever so we brought him in the next morning. We were rushed through ER and put in an isolation room where we waited. I thought our worst case scenario was we would be admitted for IV antibiotics and fluid...

When the hematologist walked in the room with an entourage of residents I knew something was wrong. She began to explain that they had overlooked Emersons lymphocyte level on the previous blood work. It had also come back extremely low. They drew a million more tests and swabbed every part of him. We waited what felt like an eternity. The hematologist came back and sat down.. She told us they were extremely suspicious that Emerson had a rare genetic disorder called Severe Combined Immunodeficiency (SCID). She began explaining what it was and the treatment involved. All I heard was "wahhhwah wahh".. My head was spinning and I felt like vomiting.. I didn't believe her. My baby was healthy, he's been in the 99th percentile for height and weight since he was born. He's the happiest baby I know. There was no way he could have something so wrong with him. 

We were admitted to Unit 2 and started IV antibiotics. There we waited.. The tests they drew in ER were what we needed for the official diagnosis and they wouldn't be back for a few days. We were stuck waiting.. Praying and hoping.. I had convinced myself that they were wrong, he didn't fit the SCID picture with failure to thrive.. So when the immunologist met with us Monday I was not prepared for what she had to say. She  began showing us numbers all leading to the diagnosis. She told us Emerson had SCID and began going into detail about his treatment plan.. I felt like I was dreaming, I had an odd feeling like I was floating high above looking down on us. These things only happen in the movies.. I remember thanking the lord for our healthy baby boy when he was born.. 

We have a very long and scary road ahead of us. For now we are to stay at the hospital until he is done his 10day course of antibiotics (Sunday) and his bronchoscopy (tues/wed). As long as he's "healthy" we are allowed to go home. Our family has been working around the clock to make home as safe as possible for Emerson. Our puppies have taken a year long vacation back to SK, all our house plants have found new homes, everything has been professionally cleaned, & HEPA filters have been installed (thanks Aunty&Uncle xo). At home we will be put on isolation so only grandmas will be allowed in, no other visitors. Once home we wait for the genetic testing to come back and are put in the pool to find a bone marrow transplant donor (1-3 months). They tell us our chances of a match are good but are not promising anything. If you would like to help out us/another family in need you can sign up to become a bone marrow donor at www.blood.ca under stem cell donor. It is as easy as a cheek swab. Once a match is found we will be admitted to start chemotherapy and then the transplant. We will be in the hospital for 1-3 months while Emerson recovers from the chemo and gets healthy enough to go home. At home we will stay on the isolation precautions for 6-9 months or until his immune system begins making Cells. 

We have a long road ahead of us and the worst is yet to come.. We really appreciate all the kind words of support from friends/family. We are truly lucky to have you all in our lives. Please continue to pray for our little boy that he stays healthy up till his transplant. 

D, xo