Benjamin's Bumps: Finally a blog!

Tuesday, March 29, 2011

Finally a blog!

Hello everyone! I am so excited to finally have this blog ready enough for you all to hear Benjamin's story. For the most part, all of the past posts are copies of the emails I have sent out. I won't email anymore except to notify you that the blog is updated.

I am so thankful to have the opportunity to share "Benjamin's Bumps" story and hope that it can help someone, somewhere. Please feel free to share it with those you know.

I have not yet taken the opportunity to connect with other families around the country whose children have the same illness as Benjamin- LCH. Through the Histiocytosis Association of America, I have found that many of them have much more serious forms of LCH than Benjamin does. I hope to get in touch with some soon. I feel deep strength in sharing with others who have been through similar things. I appreciate our friends, the Allens, and especially Desirae who not only greatly contributed to the formation of this blog, but has been a wonderful friend that I feel a great bond with. Her nine-year-old son, Hunter, had a brain tumor last June and continues to have difficult trials as a result of it. Thanks Desirae for your support and friendship!!!

Next Wednesday is chemotherapy day again. Currently, Benjamin is doing well and we hope that continues. We are just waiting for the sun to shine! At the end of our visit with Dr. Fluchel two weeks ago, and thinking that this has been the longest winter of my life, I asked him if the sun was going to shine again (I meant it literally and hypothetically, because it seems that we have had nothing but cloudy skies here in Salt Lake this spring). He responded enthusiastically that, "Yes! The sun will shine because we are in Utah!" He then stated that he gets that question a lot this time of the year. Maybe we aren't the only Oncology patients of his, wondering if the light will come again.

I have relied on his confident reassurance a lot recently eventhough I have lived here in Utah my whole life. With constant cloudiness, I am beginning to wonder if the sun will shine again! Obviously, it has caused me to empathize with many who must wonder as they experience hardships and trials in life, where the light is and if it will shine again in their lives. We have hope right now with our good prognosis with Benjamin, and we especially have hope because of our belief in God, and his Son, Jesus Christ! Because of my faith in the light of Christ, and just as Dr. Fluchel knew the sun will shine again because we live in Utah, I know that through adversities and pains, if we rely on the Lord, we can have peace and hope! He has provided a way to return to live with Him, our Heavenly Father, and our families for eternity! We can and must have hope because of these things! It can bring us more joy than we can imagine, here in this trying earthly life, and especially throughout eternity! I KNOW IT! And I know that the sun will shine again!

Angela

4 comments:

Mary-AnneMarch 29, 2011 at 10:12 PM
Oh, I'm so glad to hear that he's doing better. We miss seeing his cute little face at church. Your kids are all so adorable and we're really glad we've gotten to know you all better in the last few months. We hope Benjamin continues to get better and will be able to come back to church soon!
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Angela MMarch 30, 2011 at 2:43 PM
Thanks Mary-Anne! You and Nathanael are so wonderful to always help with our kids. They love you. They talk about you all of the time. We will all miss you when you move!
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Allyson BosMarch 30, 2011 at 4:14 PM
Wow! You are handling this hardship so beautifully! I can imagine that this winter has seemed ridiculously long. Thankfully, things are looking good it seems. It was great seeing you and Doug at the Van Dam's house Sunday night. I miss you. Your family is beautiful. You are clearly an amazing wife and mother! Is there an available Saturday eve in your future? Anyway, I look forward to these blog updates. :-)
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Just Us...April 4, 2011 at 8:49 AM
Angela- Benjamin has inspired our family so much! The stories you would send in your emails touched our whole family. As I read them to my children they would shed tears with me as we read of Benji's trials. When it came time for Braiden to pick his Eagle Project, he immediately knew what he wanted to do. He contacted PCMC and asked what he could do. They sent him a packet for the 3rd floor- a wish list. Braiden committed to getting them 100 Matchbox cars, 100 bottles of bubbles and 5 fleece blankets. As he is wrapping up his project and fundraiser he has been able to purchase 190 Matchbox cars, 180 bottles of bubbles and 6 fleece blankets. It is amazing the impact one little life can have on so many. We love your family and pray for you always!
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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 . . .