The story of Lilly for Hunter
My name is Lilly and my son was Hunter. I will be telling this story because Hunter passed away on Sept 1,2012 from Bone Marrow complications.
Hunter was 3mos old when we started to notice signs of his disease, but he was our first child so we were taken completely by surprise as he was rush off to St Francis in Tulsa, OK. Hunter was filled with pnueomsis pneumonia in both lungs, his eyes were glazed over and he his SAT’s were at 88. Hunter spent his first Christmas on life support. He had X-Link Hyper IGM, a SCID ( severe combined immune deficiency), the disease only affects the males and the females are the carriers. It consumes, yes consumes, 2 in every 1 million males. Not as rare as some but more rare than others, either way, a disease that no one should have to have.
The next few years, and the awesome help from Doctors James Love along with his awesome staff, we had minimal hospital stays and Hunter enjoyed many “normal” things in life.
Around the age of 2 we made our first trip to St. Jude’s, in Memphis, Tn, a long drive for such great care. Forever thankful for all of our doctors. Memphis trips were twice a year with a lot of poking and questions along with high anxiety for mom and son.
Hunter did attend school, and the IVIG ( injects of globulin to keep the immune system boosted, polygam or gammar usually ) given by the most caring staff at St. Francis in Tulsa, Ok, helped to keep him actively involved in “normal” kid play and fun time.
There are usually a number of ways to get your IVIG, we tried to do it at home once but it was a disaster in the end, you can have home health come in or find a local infusion site close to home, most generally. We chose to go 50 miles out because he knew the staff and their lovely faces made it a lot easier for him to sit there once a month. Some injections would last a couple of ours and some would last for half the day. It all depended upon how much his head hurt or if his weight changed. Headaches and sometimes (not too often for us) nausea would be a big issue, up until a few days after the injection. Our injections were monthly, that would change later on.
Hunter had a pretty “normal” life up until the winter of 2010, he would fall ill the night of the winter solstice, Dec 21. I did not understand the warning signs at first and wish I could go back, we cannot, so we push it down into our minds with all the other whys and hows and I should haves.
Hunter had started getting horrible migraines and on occasion started vomiting. We called the doctor and thought it to be a bug, there was no fever at first. After a few more days Hunter awoke me in the middle of the night, saying he could not move.
It was then I looked to see the dark rings and frail figure laying on the sofa, in just a few days so many things had changed. My mind was spinning with questions, ” why had the daily doses of bactrum not taken care of this?” Had the IVIG injection put something into his body this time? Why did I not see him this frail and sick before now? This disease is very manageable but once starts spinning in its own direction it is a rapid race to catch up to.
Hunter would be taken back to St. Francis, through the ER.
You are your own and your child’s advocate, only you can convince a doctor you know what is best. Never back down when you are uncomfortable being sent home, it is life or death in these situations.
The doctors tried sending us home after labs and various other tests, Hunter needed a CT, they would not do it. I called his immunologist, the awesome Dr. Love, and he helped us out with all of that. Advocate advocate advocate, you know your self and child!!!! Hunter’s lymphs in his stomach had hystoplasmosis ( usually passed through the soil or through bird feces ) it had swollen some of them to the size of golf balls. A quick stomach biopsy for confirmation along with a two week get better stay, we were back in business.
Hunter had lost quite a bit of weight during this time, so he had no problems with calorie shakes, mom laughs.
We went in taking 2 pills a day and left taking a total of 10-12 and a whole knew regiment. Hunter did return to school and everything went well. Another trip to St Judes that spring would bring heart crushing news, a BMT was in order.
We would go to Cincinnati Children’s Aug of 2011 to meet and greet a whole new order of doctors, Hunter had a high anxious way about him, these doctors are just that….doctors, they wasted no time letting him know he could die. Mom tries to process and keep him secure in keeping hope for positive outcomes.
a Bone Marrow Transplant is the only cure for the disease and most children do not live past ten, if they do by 22-25 they are dealing with liver and kidney issues. We were told when he was 2 it would probably happen. You never think you will see it, they will find another way, or the fact that your child is the acception..wrong.
Leaving in March we had our transplant, on April 9, 2012. I will spare you the ups and downs of the whole process, there were many good days, ultimately, the bad overtook them all. I am not out to set the stage for horrible outcomes that were or will not be ours, All BM recipients take to the transplants differently. We still keep in touch with a lot of surviving families, some with disease that carry no name, they can be so rare.
BMT does not mean certain death, I will not candy coat it either, these diseases are no joke, life can be going all the right way and in a second can be flipped completely around, it just takes one little touch of something contaminated. And some of these rare disease survivors that do make it past major treatments still only make it a few more years. Complications from “cures” can end up being worse than the original disease. There just isn’t enough information or light upon these disease’s. Some even cause cancer, you may start with one disease and end up with one or two more. Knowledge needs to be passed around, the doctors can only help where they know how. Without research and awareness we cannot get forward with cures and ways around horrible suffering.
Cincinnati Children’s had 9 successful transplants with X-Link Hyper IGM, Hunter was the first or second to pass from complications of the disease, with a BMT.
We do have two other boys that love and miss their brother dearly, they did not inherit the disease. We did nothing to make that happen, we were blessed with all three and very happy with the LORD letting us keep Holden and Kade.
Help raise awareness, so these stories can become fewer and fewer.
Hunter Billbe
July 5,2000-
September 1,2012