Benjamin's Bumps: Round Two Almost Complete!

Wednesday, August 22, 2012

Round Two Almost Complete!

On August 2nd, Benjamin had follow-up scans and his seventh chemotherapy treament of round two. What a blessing it was to see that there were NO MORE BONE LESIONS, and no new lesions either! The chemotherapy has been effective once again and we feel so blessed. We are so thankful to our Father in Heaven who has blessed Benjamin in this way. All of our praise and thanks we owe to Him and that this is His will at this time.

One more treatment for round two will begin next Wednesday, the 29th. It is a bitter sweet feeling knowing that we still have one more treatment to endure. Because he has been so sick the day or two following his first dose, it is a dreadful emotion thinking of fevers, possible vomiting, irritability and such. However, we are so thankful that we only have one more treatment knowing that we are at the end again!

Now the plan is to follow-up in four weeks after his last treatment with scans. If everything is clear, then we will just wait for a couple of more months before we follow-up and remove his port. And speaking of his port, we aren't so anxious this time to have his port removed because we dread having to replace it AGAIN. So Dr. F said that we should hold off a little while but perhaps we can have it removed before the end of the year for our insurance purposes, which would be helpful! Maybe a Christmas present for our little buddy?

Chances for recurrence this time? We are not sure. Still at least 20-30%, but with Doug's probability knowledge from college, he says chances are higher knowing that we have already been in that 20-30% category! So we just hope and pray that Benjamin stays clear and free of LCH, but if he has another recurrence, WE WALK BY FAITH!

Oh, and I forgot to mention that he suddenly lost most of his fingernails and toenails a few weeks ago! At least it wasn't his hair!

Thanks for all of your continued support, faith, and prayers for Benjamin!

We recently spent a week at a cabin in Bear Lake with my family. Daddy flew Benjamin up to the top of this mantle, and he thought he was pretty neat!

Mt. Naomi Berry Farms, in Hyde Park, Utah, invited HopeKids to come and pick berries there. Since we were nearby in Bear Lake, we had a fun adventure eating and picking! Benjamin did more eating that picking! Who could blame him? They were delicious!

Papa and Nana got to join us at the berry farm too! We got so many blackberries that I even made blackberry jam- my first jam-making experience! It was a new and fun time!

1 comment:

HeatherAugust 23, 2012 at 11:35 PM
Yeah!!!! Such wonderful news!!!! He is such a cutie!
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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 . . .