Being a patient is difficult; being the loved one of a patient is very difficult.  Jake barely complained- he was too sick to think about it. How many times I wished it could be me in that bed. Dave could go to work, Jake and Molly could go on with their lives, and I could handle it. I could take that burden from him. To be there and be completely helpless was excruciating.  What many people don’t realize is there are no quick, easy answers.  Doctors can only draw upon what they have experienced, seen and read about in journals. We were told over and over again that they had never seen a case like this….will probably never see another one. Dr. S. said he had ordered pet scans for patients after Jake’s revealed a hidden mass of bacteria, so encapsulated it hadn’t been found before. Dr. N. has thanked Jake for enriching his life. Jake will be his first stem cell transplant with an NK cell patient. So I believe other patients will be helped because of Jake’s experience.  People may not understand the process of ruling things out. They perform tests to rule things out. Not all tests are conclusive. Jake’s blood results were all over the place. One number was 540 and it should have been 30, he was completely decifient in vitamin B 6, and many other results that could have meant 100 things or absolutely nothing. Most of the doctors did not share the results. Even Jake’s leukemia tests were inconclusive. It took two weeks to decide if he had AML leukemia, and I honestly think they started the chemo not 100% sure. It wasn’t their fault, there just weren’t the typical results they expected.  If Dr. S. wouldn’t have taken the extra time to talk to us and tell us things that no one else would say, we could not have endured those months of waiting. He wasn’t afraid to say, “I don’t know, or I was thinking about trying this.” We were forced to be patient. Blood cultures take forever to grow. We didn’t miss a holiday in the hospital, and people go on vacation. It took longer to see if Molly was a match because of Christmas and New Year’s. People die every day waiting for answers. Many NK cell kids die of infections before they are diagnosed. People want to blame someone when bad things happen. I don’t know how we held up, maintained our composure, or had the patience to endure the last 2 years…there have been irritations along the way- the “acid reflux” misdiagnosis, the infection being missed more than once, the shunt malfunctioning,  the nurse telling us there’s nothing they could do.  Did Jake inherit this?  Was it a random mutation? Is this God’s plan? I may never know, but I am thankful that I have had some peace in not bearing the burden of placing blame on anyone. ..

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