Benjamin's Bumps: March 2011

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

Tuesday, March 22, 2011

Improvement!

Hello everyone!

As I last wrote, we were concerned about the bone lesion on Benjamin's forehead getting larger. Almost four weeks ago, we learned from the results of an x-ray, that it is actually getting smaller! We were thrilled with that news and figure that the bump must just swell or something at times. Also, Dr. Fluchel, our Oncologist, decided that because of this good news, that we could post-pone his follow-up treatment as well. So instead of doing all of the testing in March, we will wait until the beginning of May! That is wonderful because it's time-consuming and not fun for Benjamin!

Also, since I last wrote, Benjamin has been hospitalized again(AND had the chicken pox! Crazy enough! But that wasn't so bad after all!) as a result of different viruses he has had. Because of his central IV line (his port placed in his chest), the doctors have to rule out any bacterial infections anytime he gets a fever. Both times with a fever, the virus has caused him to be neutropenic (his neutrophils, a type of white blood cell, are too low.). So after a day or two of separate trips to the Oncology clinic/ ER where septic work-ups have been done on the little guy (blood work and blood cultures and then IV antibiotics), he finally has been admitted because the virus caused him to be neutropenic and immune compromised to the point that they worry about his susceptibility of getting another more serious illness. During his first hospitalization in January, they never found anything to attribute the fever to (and figure it was the result of one of hundreds of viruses in this world!). This last time (two weeks ago), they found that he had Infuenza B- a very minor virus. But atleast they had something to attribute the fever to and so Benj didn't have to stay in the hospital more than one night.

We thought he was much better after the flu, but then he had to deal with stomach flu too! So last week, he was sick again, only this time his neutrophils didn't drop. He was able to get his chemotherapy but they gave him some IV fluids to help! And it was a help! He recovered mostly by Thursday just in time to feel the side effects from his steroid he takes for the five days after the chemotherapy! He was very irritable all weekend. But today I am so happy to report that there is a smile on his face (and ours too) because we are done with steroids for two weeks and two more days! YEAH!!!

Thank you all for your concern for Benjamin! We still appreciate your thoughts, prayers, and acts of service on our behalf!

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 . . .