Benjamin's Bumps: April 2013

Wednesday, April 17, 2013

Second Port Removal!

From my last post, I wrote of Benjamin's third LCH recurrence in December. He had two bone lesions (tumors), one on the top of his skull and one on his right femur. An anti-inflammantory, indomethacin, was prescribed which he took for eight weeks. Then we followed-up in Oncology with another skeletal survey (full body x-rays) which showed that the two lesions were the same. They were not better, but they hadn't magnified and more lesions hadn't manifested. As a result, he stayed on the same medication for eight more weeks.

Today, after eight weeks, we learned that the two bone lesions have decreased in size and there are no new lesions! We are thrilled that this probably is a sign that this medication is working (at least for now)! The new plan includes staying on the indomethacin and follow-up in three months. For now, we will have Benjamin's IV port removed and hope that we never have to replace it again! The surgery will likely be scheduled for next week sometime!

So it is a good day! We feel so blessed and happy! When speaking of going to the hospital and having his port accessed, he tells us, "I be brave and strong. Port no owies!" He really is brave and strong! He has amazed me how tough and resilient he has handled all of his disease! I know that one day we will look back on all of this with gratitude for the blessings and the learning opportunity it has been. However, this trial doesn't feel over to me and I think we will continue to fight this for many years to come, but it would be wonderful if we could call this the end! Our lives are in God's hands, and whatever He chooses, we will do our best to accept. For now, we are so thankful for the relief of today's results and pray it stays this way forever!

As we were on our way home from the hospital today, we stopped at a home improvement store right near the Salt Lake International Airport. Our car was parked directly under the flight path of large passenger airplanes, one of Benjamin's favorite things. So instead of racing home for a nap, we decided to sit and watch! Every two to three minutes, a large jumbo jet would fly right over our heads! He was awestruck! It was a moment I cherished with my little boy! I sat their filled with gratitude and just listened to some of my favorite music. One song in particular is called, "All My Days" by Hilary Weeks. I will quote the words as they were so fitting today.

All My Days

Love
And Grace
Brought Him here
A world to save
He suffered all
He felt our pain

He knew it was the only way

He
Understands
When I'm unsure
He knows the plan
And when I'm tired
Losing my way
He picks me up and gives me strenth
And I will praise Him

All my days
All my days
May my voice ring out in praise
For Him who died
To give me life
I will glory in His name
All my days

He sends His love
So patiently
He teaches me
Step by step
Leading me home
It's the greatest love I've ever known
And I will praise Him

All my days
All my days
May my voice ring out in praise
For Him who died
To give me life
I will glory in His name
All my days

And when I see Him again
I will bow down and say

All my days
All my days
May my voice ring out in praise
For Him who died
To give me life
I will glory in His name
All my days

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 . . .