Benjamin's Bumps: July 2011

Wednesday, July 6, 2011

Holiday Sickness (again)!

Top picture: taken by Maile (our 4 year-old) who stole the camera , evidence that she and Benjamin were getting into trouble! Where was mom?

Bottom picture: Our recent family vacation to Mt. Rushmore! What a great trip!

Thankfully for Benjamin the next holiday isn't until Labor Day- almost two months away, which probably means we are almost two months away from his next fever!!! Or atleast it seems that way (and we hope it will be atleast that far away). I think that Benjamin has been sick on almost every holiday and several weekends (which means we have to go to the ER and not the Hem/Onc clinic). Poor Benjamin missed our family barbeque and fascinating fireworks on the 4th of July! Instead, he and I spent the evening at the PCMC ER because of another fever! On a positive note, we missed the crowds (we beat the firework injuries apparently) and we made record time arriving home 3 hours and 45 minutes after we left! Yeah!!! So the routine work-up was quick and his blood work was fine.

Yesterday, it was apparent that he still didn't feel well. We did our best to avoid another ER visit and hung in there until this morning when he had his chemotherapy appointment. His fever seems to be subsiding and his blood work was still okaytoday. I was grateful that they still chose to give him his chemo so we don't have to return to the hospital another day.

These small inconvenient "viruses" are such a pain, and yet I feel that I really can't complain. I am learning more and more about the hardships of other "histio warriors" and feel grateful that Benjamin is pulling through this so well (so far). We pray that he continues to be strong and that his little body continues to fight, fight, fight!

Dr. Fluchel, if you read this, I want you to know how fabulous we think you are! We appreciate your knowledge, caring way, and especially your patient and listening ear! From the very first day we met you, we were thankful that you took your time listening to our concerns and answering our questions! You have been outstanding! We also have appreciated the clinic staff. I have especially appreciated Karen (who we will miss because she is leaving), Dan, Jason, Pam, and Sandy. Also, Dr. Bruggers and Dr. Wright have both been so helpful and kind.

Again, to all who care to read this, I ask for your thoughts and prayers for the other histio warriors in this world. As I have mentioned, I have met many others on the Histio Family Facebook group (almost 700 members) and learned a lot about LCH from this great "family". I also read that an 18 year-old girl lost her battle with HLH (a more severe form of LCH) last week. She's now a "histio angel!" I am still thinking of her family and pray for their comfort and peace.

Lastly, because Benjamin sadly missed fireworks on the 4th of July, we anticipate the other firework holiday here in Utah (July 24th, Pioneer Day)! We will have great fun watching Benjamin's eyes light up on the 24th and our little guy can enjoy them then! We'll be grateful that night for no fevers, and just to be with our family. Maybe for years to come, fireworks will have a new meaning for us!

About LCH and Benj

LCH, Langerhans Cell Histiocytosis, is a rare blood disorder that is thought to be like cancer and an auto-immune disorder. It can spread like cancer and is typically treated like cancer with chemotherapy. Histiocytes are a type of white blood cell that over produce in particular areas of the body and then can be problematic in various organs. It can manifest itself in different organs of the body, some being more high risk than others. Benjamin's LCH is in his bones and lungs which categorizes him as having a "moderate" case of LCH. In October of 2010 at the age of eight months, we noticed Benjamin's swollen eye was not improving. We thought it was the result of a fall. However, after visiting our primary care doctor and a CT scan of his head was done, bone lesions (tumors/"bumps!") on his skull were found, including the one under his eye, and we were told he had this serious condition. Benjamin underwent 52 weeks of chemotherapy (Vinblastine/Prednisone) afterwhich he was declared clear and free of LCH in November 2011. We enjoyed two-and-a-half months of health and wellness until we discovered some pain in his side. On January 25, 2012, his second birthday, more bone lesions were discovered, including one on his right rib cage where he had been having the pain! He had 7 or 8 new lesions in his body- three on his ribs, three or four on the parietal bone of his skull, and one on his third left toe. His second-round of chemotherapy included Ara-C and Vincristine, along with Prednisone about every four weeks for four days consecutively each time. This concluded after week 32 (about 7 1/2 months), when his scans were once again clear and he was declared in remission again in October of 2012. In December of 2012, a third recurrence was discovered with two more bone lesions. Benjamin took an anti-inflammatory for one year without any major recurrences. He then had his second port removed in December 2013 and has since had no active disease. We feel so thankful that he is a happy and a healthy little guy! We love having him in our home and part of our family. This disease has brought some new meaning to our lives and we hope we can help someone by sharing it with this blog. Here is his story . . .