Benjamin's Bumps: April 2012

Wednesday, April 18, 2012

Moving Right Along!

Me and my buddy!

He loves making silly faces and has learned that he gets a lot of attention for them!

His port has to be accessed (with the needle and IV tubing connected) for four straight days for chemo treatments.

Mom giving chemo at home. The first day of chemo he gets in the clinic and the following three days we do at home. It is a 30 minute process with someone, usually daddy, holding Benjamin. He is a good sport!

I apologize that it has taken a while since I have updated. Benjamin is doing great! At our last chemo appointment, he had a skeletal survey (full body x-rays) done to check his progress. We received great news, that all of his bone lesions are "almost completely healed," as stated by the Radiologist, and no new lesions found! We are thankful for this news and feel fortunate that Benjamin is having success on this chemo regimen. However, we know that the real test comes when he completes this course of chemotherapy in September/October.

As for the effects of Ara-C and Vincristine (his chemotherapy drugs), he does okay with them. It is evident that these drugs are stronger than his first-round drugs were. He appears more pale, acts a little more irritable, and just wants to be held during the five days of treatment, and is just not a happy little guy. He has occasional jaw pain (a normal side effect), and still has to tolerate the effects of the dreaded Prednisone! All in all though, he seems healthy and well which we feel thankful for. We are also very thankful that his hair hasn't thinned yet. Dr. F. said that it probably would have by now if it is going to. So . . . WOW!!!! That is a huge blessing! I try to remind myself of that when he hands me a comb and asks me to "get hair done" every morning. I feel thankful for his hair!

I want to post a link to my favorite LDS General Conference talk again from this last Conference. (Actually, I had many favorites!) Elder Ronald A. Rasband of the Quorum of the Seventy spoke about his grandson who was born with a rare chromosomal disorder and spent a lot of time in the NICU at Primary Children's Medical Center (our second home- not the NICU of course, but across the hallway in the Hem/Onc Clinic). It was an inspiring talk!

He quoted Elder Russell M. Nelson saying,

“For reasons usually unknown, some people are born with physical limitations. Specific parts of the body may be abnormal. Regulatory systems may be out of balance. And all of our bodies are subject to disease and death. Nevertheless, the gift of a physical body is priceless. …
“A perfect body is not required to achieve a divine destiny. In fact, some of the sweetest spirits are housed in frail frames. …
“Eventually the time will come when each ‘spirit and … body shall be reunited again in … perfect form; both limb and joint shall be restored to its proper frame’ (Alma 11:43). Then, thanks to the Atonement of Jesus Christ, we can become perfected in Him."

I know that is true! I am thankful to know that! I am thankful for the Atonement of Christ and know that we can all be perfected through Him one day, including little children who seem to suffer so greatly at times on this earth, like my little Benjamin. I am thankful, we are thankful . . .

Here is the link to that talk:

Elder Ronald A. Rasband, "Special Lessons", April 2012 LDS General Conference

Thanks to you all for inquiring about Benjamin. You are all so very thoughtful! What a blessing it is to have friends. I will try to post a little more often. Have a wonderful day!!!!

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 . . .