Langerhans Cell Histiocytosis

You may have read here about Bo's disease. He has Langerhans Cell Histiocytosis (LCH).

We just returned from our visit with oncologist. Although the results of Bo's tests are very hopeful, visiting the cancer center at Primary Children's Hospital was a humbling experience. The nurses spoke in sympathetic tones, and the walls were lined with bright pictures and drawings, as if to cheer us up. We waited in our room for more than an hour, which gave us plenty of time to roam the hallways and read stories of survival, see pictures of the children, and enjoy artwork done by the patients. There was a framed quilt, with each square decorated by one of the hospital's patients. Cancer SUCKS, and I fight cancer like I play basketball-I'm an all star, are a couple of the messages from the quilt. My heart hurt for every child and family that I watched enter and leave the facility.

 After reviewing all of the xrays, blood tests, urine sample, and CT scan images, the doctor's have concluded that Bo's case of LCH is isolated to his skin. This is such wonderful news, and the best possible outcome for Bo. With these results, they really do not treat him at all, just monitor him every 3 months over the next year. If his "rash" is gone by the end of the year, and if the tests are fine, we will not have any more regular checkups. This would of course be ideal and is what we are praying and hoping for. The doctor said that roughly 90% of patients with LCH have an outcome such as this.

Through this experience, we have truly learned some amazing lessons. The difficult part is to always remember these things, keep them on the forefront of our minds, and act accordingly. We have placed the wooden car (when we first learned of Bo's diagnosis, the nurse gave Bo this cute car)with Bo's patient ankle bracelet in our front room as a constant reminder. If I could give you any advice, it would be to LOVE your children every day. Hug them a little bit tighter, and enjoy them a little bit longer. Our children are a blessing and a gift. Also, focus on your relationship with Christ, because that relationship will give you strength to endure whatever it is that you may need to endure.

 When I first found out that Bo had LCH, and before meeting with the oncologist, I did some "research" on the Internet. On one website, it said that LCH in infants most likely has a fatal outcome. For a time, I thought that I might not have my precious baby to hold and hug forever. This hurt in a way that I cannot describe. I have always loved Bo deeply, but in that moment, I think I realized how deep my love runs for my child. After talking to the doctor, and learning legitimate and trusted information about LCH, I have found that this information was not accurate as pertaining to Bo's condition. I do not think I will ever forget the feelings I had when I thought losing Bo was a reality.

Although the above thoughts might seem negative, the feelings running through me and our home right now are quite the opposite. Relief, humility, love, and gratitude are just a few of our feelings. Most of all, we just feel blessed. Blessed to have a wonderful, happy, and healthy family.