Benjamin's Bumps: It is LCH

Monday, October 11, 2010

It is LCH

This picture was taken just after his biopsy surgery. They biopsied the bump over his right eyebrow. The surgery went well and we were thankful to return home that evening rather than having to stay the night, which they almost had us do.

We just received the news! Benjamin does have LCH (Langerhans Cell Histiocytosis) like they thought. We feel relieved to actually know and we now have a treatment plan too. It will proceed as follows:

This Wedesday we will go to PCMC for 1- a skeletal survey (x-ray of his entire body) to make sure there are no other bone lesions. And 2- And appointment with another oncologist named Dr. Fluchel, who is more of an expert on LCH. Also at that appointment, Benjamin will receive his first chemotherapy treatment. This will be IV and will infuse for 30 minutes to 1 hour. We will then be released to come home!!! I am thrilled that there will be no inpatient stays with this course of treatment (unless there are complications of course).

Friday of this week, we will return to the hospital for an MRI to check his pituitary gland. Then next Tuesday, Benjamin will have a portacath (a permanent port to infuse IV meds) surgically placed. Then next Wednesday will be his next chemotherapy treatment.

The chemotherapy treatments will be weekly for six weeks and then he will have another CT scan to see the results. Then they anticipate this course of treatment to last for 12 months approximately.

We feel relieved to know his diagnosis now. We feel so blessed that they do know and that we don't have to wait and wonder any more. We also feel thankful that we can get this started so quickly. We have some anxiety and worry as to how the chemotherapy will affect our little guy. But we feel like we are in good hands with great doctors.

With so much support from you all, we know we can get through this! It is so difficult to express our gratitude to each of you for your thoughts, prayers and fasting. We know that many of you fasted yesterday on behalf of Benjamin and we can't thank you enough. PRAYER AND FASTING WORK! We know it. And we are overwhelmed at how you all have shown so much love and compassion towards us as a family and especially little Benj! Heavenly Father is watching out for him too and we couldn't ask for anything more than that. We feel so much comfort and peace from this knowledge. We know this is going to work out and that Benjamin will be continually blessed throughout this process. We just have to do our part in helping him the best we can and Heavenly Father will take care of the rest!

We love you all! Thank you, thank you.

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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 . . .