Benjamin's Bumps: January 2012

Tuesday, January 31, 2012

LCH is back

Southern California on Thanksgiving Day!

We had a lot to celebrate and be grateful for!

Riding the Teacups at Disneyland! Maile and Benjamin are buddies!

Celebrating at Disneyland! No more LCH (or so we thought)!!!!

This is not at all what we expected! We certainly knew that Benjamin's LCH could recur, but we were hoping for the best obviously! Benjamin's chances for recurrence were about 20-30%! We thought he was going to be in that 70-80% group but God has a different plan than what we thought and so we will just go with it to the best of our abilities! Sadness and fear have once again overwhelmed our hearts, but we have faith that Benjamin is in God's hands and that He will guide us every step of the way as he often has in the past. The latest story goes like this . . .

Last Wednesday was Benjamin's second birthday! As it turned out, Dr. F was in the clinic that day too. We had been concerned with the pain that Benjamin had been complaining of for the past 10 days or so. Each time we picked him up under his arms, he would wince as if something was tender there. After our appointment in Oncology, we took a trip down to Radiology for a skeletal survey. Because it was late in the day, Dr. F told us he would call us that evening or the next morning with the results. That night, we were able to celebrate the life of our little guy by having his special birthday dinner and then cake and ice cream with only our little family! We gave him his birthday present, which was a tee ball set and then played ball for a short time before everyone went their separate ways for the evening.

We received the surprising news the next morning when Dr. F called. He explained that Benjamin has four new bone lesions. One being the result of the pain in his side- the bone lesion is located on his rib. Another lesion is on his toe, and two are on the parietal bone of his skull. The treatment plan will include Ara-C and Vincristine, two commonly used chemo drugs and a little more aggressive than what we did before. This treatment plan will begin tomorrow after the placement of his port. He will then have a CT scan on Thursday along with chemo again. Friday and Saturday will also be chemo days. A week later will be the next treatment, then two weeks later, then three weeks, four weeks, and then five weeks later. After that, he will go every five weeks assuming he shows improvement.

I worry about these next few days knowing that Benjamin could potentially have some severe side effects with these drugs. However, I have learned too that because he will be on smaller doses than others who take these, his side effects should still be minimal. We pray that Heavenly Father takes care of him once again during this hard time. We have faith that "angels will bear him up!"

Thanks to my Aunt Pam who sent me the most comforting words today:

Isaiah 41:10, "Fear thou not; for I am with thee: be not dismayed; for I am thy God: I will strengthen thee; yea, I will help thee; yea, I will uphold thee with the right hand of my righteousness."

I believe these words with all of my heart! We as a family are so thankful and feel so comforted by the knowledge that God lives and Jesus Christ is His son who lives today! It is because of Him that we can have comfort in times of trial and challenges! These thoughts bring us joy and gratitude and hope for better days ahead even if things don't go as smoothly or as well as we might hope. Adversity in this short life is all part of the plan of eternity and salvation. We grow and change for the better if we are willing to accept the challenges God gives us and do our best with them as we know how. I know these things are true because I have experienced these emotions and many blessings from past hard times! Thank you all for your kindness, support, and especially prayers! It means a lot!

Here we go again!

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 . . .