Benjamin's Bumps: Sickness in the Spring

Tuesday, May 3, 2011

Sickness in the Spring

Last, Wednesday, April 27th, was supposed to be chemotherapy day. As it turned out, Benjamin had a fever during our clinic visit. Instead of getting the Vinblastine, the routine fever work-up was done because they have to rule out any bacterial infections that might be caused by his IV port. A viral panel was done in addition where they found that he had Rhinovirus (just a plain old cold!). Nothing more was ever found but the poor little guy is still sick almost a week later, only without a fever thankfully!

The next day, Benjamin still had the fever. Only this time daddy, who played Mr. Mom for a couple of days while I was gone to BYU Women's Conference, got the opportunity to spend the day at the hospital with Benjamin! It was a long day for all of us, especially Dad! (I didn't enjoy Women's Conference as much as I would have liked to due to worry and concern for Benjamin and a possibility that they would admit him to the hospital again.)

Doug was ready to go back to work pretty quickly after playing "Mom" for those two days! But he was a trooper and took great care of Benjamin and the kids. We continued to worry about Benjamin's fever until Saturday morning when it finally seemed to break.

The doctor who saw Benjamin on Thursday insisted on giving him his chemotherapy afterall. If I would have been there, I would have protested. But now this week I am thankful that I don't have to make that long trip to the hospital again after all. Unfortunately for Benj, he still doesn't feel well and is having to take the dreaded Prednisone on top of it all for the next few days.

Interestingly enough, the Prednisone makes Benjamin hyper (in addition to the irritability). His hyperactivity is kind of funny! We laugh at him as he suddenly becomes intense at running, throwing things, and yelling! He cracks us up as a family! This morning, just after I got Benjamin dressed, Maile, his four-year-old sister, took off Benjamin's pants and then his diaper. He was running free throughout the house with her following and they both were having a great time! I decided to laugh with them and then was touched with a satisfactory mom moment! I realized that I LOVE my job as a mom! I'm thankful that Doug loves his job at his work and is supportive of me being at home!

Happy Mother's Day to all of the moms, grandmas, and women everywhere! What a blessing in this earthly life! I especially am thankful for my children, including my sick, but happy little guy! It is a privilege to be Benjamin's mom!

Follow-up testing for his LCH will occur in two weeks. I will blog the results then!

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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 . . .