Benjamin's Bumps: March 2012

Monday, March 5, 2012

Kindness and Awareness

The Activity Day Girls in our LDS ward gave us a "heart attack" just after Benjamin's recurrence news!

Many people have been so kind to do similar small acts of service that mean so much!

Liam's Lighthouse Foundation logo

Posters of children (and some adults too) all around the world who suffer from Histiocytosis. This was taken in Rockefeller Center, I believe, on February 24th. Liam's Lighthouse Foundation organized this Histio awareness campaign where many affected families stood outside of the Today Show and were visible to the entire nation for two days in honor of Rare Disease Day on February 29th.

First off, I hope you will all take a moment a view the video we as a family have been recently touched by. "Liam's Story" is sad but has inspired a drive in me and us to do more and to do better! I will post the link here to Liam's Lighthouse Foundation and you may click on "Liam's Story" on the right hand side of their page. To go straight to the video, you can go to my "Other Links" section on the left hand side of my blog. Here is the link to their website:

http://www.liamslighthousefoundation.org/

Thank you, thank you to Liam's Lighthouse Foundation for all of the work you are doing!

Keep it up!

As for Benjamin, he is doing well! His first chemo treatment (of round 2, of course) was on February 8th. He received the Ara-C and Vincristine in the clinic that day. He seemed to tolerate it well other than some minor stomach pain that he complained of. The next three subsequent days were at-home treatments. The home health nurse came on Thursday and taught me how to administer the chemo (scary thought, I know!). It turned out fine, thankfully.

With the flu and cold season being at its peak, Benjamin did have a miserable cold and cough for a couple of weeks. One day included a fever and a fever work-up in the Oncology clinic. But he seemed to get over it fairly quickly. Thankfully the fever subsided quickly too!

He also has had weekly blood draws and last Wednesday for the first time, his blood counts were low, another expectation. We have done our best to keep him away from germs, which is sometimes hard because we haven't been able to take him anywhere with us. But with so many of us to share the load and take our turn, I have been able to get out and get errands and such done. AND thanks to my mom and a other kind friends that have stayed with him, I have been able to attend church and do other necessary tasks. I appreciate it so much!

We have been abundantly blessed once again with so many friends and family who have watched over us and taken care of our needs. Thanks for caring. It means more than you know. Words can't adequately express our gratitude!

Benjamin's next cycle of chemotherapy begins this Wednesday, March 7th. We hope he does well and we will pray for no fevers as we continue to pray for his complete healing!

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 . . .