I have not posted in a while. It just hasn’t been important over the past month. I haven’t done any real planned lessons with my boys. I am not on “schedule” of where I wanted to be. Life hit me upside the head…and rocked my world. My baby was diagnosed with a rare disease called Langerhans Cell Histiocytosis. Ever hear of it? Probably not, I didn’t. It’s a quasi cancer/ inflammatory disease. It is super rare, and not much is known about it. But it is treated like cancer. It’s scary, and each day I battle to not be scared.
This trial has really brought me to my knees…where I need to be. It has shown me, that in my weakest moments…my God is magnified. It is amazing. I don’t want to be strong, and I’m not. Each moment, I am relying on strength from Jesus to get through the day. To be able to answer questions my older boys throw at me. To answer them honestly, even when I cannot give them a definite answer or an answer they want to hear.
Nothing is harder then to see your child hurting, in pain and scared. And you can’t fix it. At some point, each of my boys have had nightmares, waking me up in the middle of the night asking if Joseph is going to die. Or asking me if Jesus will fix him. How can I comfort them? What is the best way? Other then to pray with them and ask our Lord to take away our fear and remember how much Jesus loves us. We need to believe and have hope in that, no matter the circumstances.
Today is my first post about what is going on, because today I see a real change in Joseph. He had his second chemo treatment. The mass that was the size of a walnut on his mastoid bone is virtually gone now. He doesn’t seem to be in much pain anymore. He is having some equilibrium problems, but those are getting better each day as well. I feel like we are establishing a routine…and we are finding a new normal.
Our summer plans have shifted…my baby got sick, real sick. And we had my dad and sister come from the mainland to help with my older boys while the baby was having a bunch of tests done. We had great friends keep our boys for days and nights while I was in the hospital and Solomon had to work while the doctors were trying to figure out what is wrong with Joseph in the beginning of the month. We have been blessed by so many people, it’s overwhelming when I think about it. Prayer warriors have been praying for little Joe, donations have been offered up to help with some of the medical costs, and so many families have brought us dinner. I see how God’s hand is at work. I see it playing out. I can see how HE is being glorified through all our trials and tribulations…and that gives me the strength to smile and be ready for a new day.
Tomorrow we start some type of organized lessons. My 3 other kids have actually asked when we are starting school again. Since they are asking… tomorrow we will crack open the books again. We are still on a light schedule which I will keep throughout the rest of summer before we add other subjects. We are trying a modified “unschooling” type of homeschool…but I also need some structure. So do they. So, we are exploring more about learning random things and explore…but will forge ahead with math, spelling, grammar, history, bible and science. Just at a more slower pace then I originally thought.
If you haven’t followed along on facebook…here is a link to Joseph’s page. It is where I update on how he is doing.
Below is a summary of what and how this all happened.
We have been asked the how’s, why’s and when this all happened with Joseph. Here it is in a short version.
It has been a month since we knew something wasn’t right with Joseph. It was a month ago we took him to Pali Momi ER because of the “bump” growing behind his left ear. Because he did actually bump it, they said it was a hematoma and would go away in time and plus he was still acting normal. A few days later, it still wasn’t going down, and it was getting redder and bigger. We took Joseph to his pediatrician, who said the same thing. That sometimes a bump on the head will look worse than it is, and it could take a couple weeks before it subsides. Meanwhile, this pea size bump is just growing daily…right before our eyes. His ear is now sticking out and he is in pain. By the third week, we took him back to the pediatrician. The doctor looked at him, and said that he felt we needed to see a specialist. That it should have gone down and not grown. That day, we dropped the other boys off at our friends house and just took Joseph to Kapiolani Hospital for Women and Children. We didn’t want to wait for a consultation. We knew something was wrong. In the ER they ordered a CAT scan immediately with results that appeared to be mastoiditis or osteomyelitis and that Joseph needed to be admitted. Throughout the 5 days he was in the hospital we got a lot of “I don’t knows” and “we need to run more tests.” He had an I & D (incision and drain) because they thought it was osteomyelitis and they needed to get the infection out. (Although he wasn’t showing signs of infection.) They said he skull was eroding from the mass growing on it and part of it might need to be removed. But 30 minutes into that surgery, they stopped. There was NO puss, blood or infection. It was a “massive cell growth.” So they had us wait for the following day to do the MRI. After the MRI, they still couldn’t confirm what they were dealing with and needed to go in an hopefully remove it after a quick biopsy result. The next day he was back in surgery where they wanted us to wait for initial biopsy results to come back so they could discuss with us on how they needed to proceed. Within an hour of his second surgery, the doctor came back with unclear pathology reports. It read as an inflammatory disease and it read as cancer. But until they knew, they couldn’t remove the mass. They biopsied more of it to send to the mainland for tests. They scheduled us an appointment with the oncologist even though they weren’t able to conclusively tell us what we were dealing with. So again, we waited…until we received the news of this rare disease Langerhans Cell Histiocytosis. The oncologist ordered a full body x-ray to see if it has spread to any other bones. Those results came back negative thank God. He just had a bone marrow biopsy and had his portacath put in. We are awaiting the results from the bone marrow biopsy and we start chemo tomorrow.
This journey has seemed so long already, and it has only been a month.