Our little Benjamin is fighting his LCH! We learned today that his bone lesions on his skull are once again much improved, or "substantial reduction in size" is the description the Radiologist used in his report. The LCH spots in his lungs are non-existent. There is no evidence of the mass in his mediastinal area of his chest as well! No new lesions or problems were found- which was a worry for us. We feel so relieved and excited! Another significant blessing that I haven't mentioned before is that Dr. Fluchel told us that he is a little surprised that Benjamin doesn't have DI (Diabetes Insipidus). Because of Benjamin's lesions near his CNS (Central Nervous System- brain), he has a much higher likelihood that he would have DI. So far, Benjamin has no signs of it and we are so thankful! Feeling hopeful, we watch him constantly and pray for the best! We feel overwhelming gratitude to Heavenly Father for all of these blessings. He has been watching over Benjamin- we know it. There is no question in our minds that these blessings are the result of the many prayers, fasting, and the priesthood blessings on Benjamin's behalf! We owe Heavenly Father our gratitude for it all! No coincidences here- just direct blessings from heaven!
This past week, I have finally taken the opportunity to contact other "histio" (histiocytosis) families on-line. As rare as the disease is, there are many in our country who do suffer from LCH. Most are young children and babies like Benjamin. There are a few adults as well. As I have learned from my new "Histio Family", these affected people are called "Histio Warriors"! There are too many of them suffering every day along with their families. Many of them have a much worse case of the disease than Benjamin, where their more vital organs are affected, or their condition is more advanced. With all of the gratitude we feel today, I am still remembering the many new "family" members we have come to know recently who fight and fight this horrific disease!
In addition to our histio family, we are thinking of our wonderful friend and neighbor, Adam, who was diagnosed with Non-Hodgkins Lymphoma this past week. If you know Adam, or even if you don't, we are asking you to remember him in your prayers. Adam will begin his course of therapy (chemo, then radiation)next week! Adam, we know you will be blessed and watched over! Heavenly Father is mindful of you and your family! Have faith in all the prayers to heaven that will be said on your behalf! Prayer is real and it most definitely works! We think you are wonderful!
As for our little Histio Warrior, (the real reason for this blog) he was so happy and pleasant today. Once again, it pains me to give him his steroid that will make him not so pleasant and happy, but it is worth it to have such good results as we did today! The plan is to continue his every-three-week treatment plan through October. Then, if all continues to be well, we should be able to have his port removed. He will then be followed at Oncology every three months for a year approximately, then every six months for a couple of years. Then maybe every year after that for a couple more years- assuming he has no LCH recurrences!
Thanks for always inquiring about our little guy! We appreciate all of the love and friendship we have felt all around us.
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