Benjamin's Bumps: First Fever and Festival of Trees

Sunday, November 28, 2010

First Fever and Festival of Trees

Hope you had a great Thanksgiving! We did! It was Benjamin's first Thanksgiving and I would imagine he'd probably say however, that it wasn't so great for him! He didn't feel well and so he didn't take advantage of the yummy mash potatoes that normally would have been his favorite!

Wednesday was suppose to be the big day! The follow-up CT scan was scheduled for that morning (the 24th) but as it turns out, Benjamin woke up with a fever on Tuesday morning (the 23rd). We spent Tuesday at the hospital instead of Wednesday. After IV antibiotics and fluids and even a little oxygen too, he recovered enough to come home Tuesday afternoon. Nothing serious was found and they figured he must have had a viral infection. As a result of the fever, we had to cancel the CT scan (because they wouldn't sedate him). We were disappointed because we feel anxious to know the progress from the chemotherapy treatments. On a positive note, we didn't have to drive up to the hospital in the "blizzard" storm!

The CT scan has been rescheduled to this coming Wednesday (assuming Benjamin is healthy and well- today he has cold symptoms with a really terrible cough, as any of you who might have heard during church today!). After that, we will meet with the doctor and determine the next steps. We hope that the treatments will be reduced to every three weeks instead of every week. That is the plan IF there is enough improvement in the lesions. If not, then we will have to increase to a more aggressive treatment plan. Dr. Fluchel is optimistic. Yeah! We'll keep you informed.

Also, I wanted to inform you of a neat thing for our little guy! We have a family friend, Jackie Petersen and her friends who have decorated and donated a tree for the Festival of Trees in honor of Benjamin this year! We are so excited to see it as we know Jackie has put a lot into this tree. It is going to be an amazing tree! If you are interested in seeing it, the Festival of Trees is being held this Wednesday, Dec. 1st through Saturday, Dec. 4th at the South Towne Expo Center. Jackie also has made available some discount tickets if anyone is interested in going. The cost for them is $2.50 per child and $4.00 per adult. Of course, all the money raised there fully benefits Primary Children's Medical Center. I love the Festival of Trees and always have! (In fact, Doug and I volunteered there together on our first date!!!) We have gone almost every year in support of the Festival, but we never thought that we would be on this end of it, having a sick child who has greatly benefitted from the care at the hospital.

Let me know if you are interested in tickets. Also, we'll keep you updated this week on Benjamin and how the events of Wednesday play out! Thanks again for your continued prayers. We need them still!

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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 . . .