No More Pittsburgh
I am skipping ahead six weeks in Josiah’s journey per my last blog post. Things were looking really good. Josiah was losing weight. His confidence was climbing. He was vomiting much less. His vision was on point. He was going to school on a regular basis. We believed he was getting better. I was excited to go to Pittsburgh. I knew we were going to hear how amazed they were at his progress. We were going to hear that they could not believe how much the tumor had shrunk. I believed that God was answering my prayers of healing my boy.
I really had no doubt.
March 1, 2016
Josiah was very upset about getting the vaccine shot on Monday. He broke down in tears a few times on our long journey to the hospital starting on Sunday morning. We were able to get free Southwest tickets for this trip. I was glad to avoid driving, but we did have to fly out of Baltimore. We had never flown a big jet to Pittsburgh before… everything was different.
We made it in plenty of time. It was a very disturbing experience for Josiah to have to take off his brace, walk through the metal detector, and then wait for them to process the transport chair. He doesn’t like to stick out… no matter how nice the people were. It was hard.
But we made it to the plane and enjoyed our late lunch waiting for it to arrive. We landed at Pittsburgh International soon after we left Baltimore. It was so weird not being at the Alleghany Regional airport. I missed the super nice ladies who always got our rental car. The person at Pittsburgh International was nice enough, just can’t really compare.
So we drove on, a strange to me, interstate arriving via a new route across a different bridge into downtown. We got to the same hotel as we always stayed. We breathed easier and Josiah got in his swim. He really loved that pool. I’ve seen many smiles there and had some great moments enjoying him enjoying the freedom of the water.
We both got to bed. We had to be there at 6:30 in the morning for the MRI. We arrived the next day on time with no problems. We didn’t have to wait very long for them to take Josiah in. I wasn’t very anxious and neither was he. We’ve done this enough times.
I was only anxious to know how much the tumor had shrank.
He came out of sedation at about 10:30 (in record time). We went right up to the oncology department and were seen quickly (fastest yet). They took us into the room and we settled in. But before I knew it, the doctor and PN were there. I was getting excited.
Dr. Mason asked if I thought it was OK for Josiah to be here for “this”. I told him that he always has been and didn’t see why not. He turned to the computer to show me the MRI and said OK.
He showed me the tumor in the Ponds region. It had shrank… dramatically. I got up to see the screen better. A nurse had come in to take out Josiah’s IV port that was still in his hand. I was thrilled and stood between Josiah and the screen. He put up a picture of the last scan. It looked like it was half the size. I was smiling ear to ear.
“But when we look above the Ponds it has spread,” said Dr. Mason solemnly. The tumor has grown up towards the rest of the brain. It has not spread downward and it has shrank in the Ponds thus we have his better symptoms that I have been describing to you.
I’m sure Dr. Mason had said some other things… some of them with many syllables but I can’t remember them. I do remember him saying that Dr. Hwang will tell us more and that we were off the vaccine trial. “So we’re not going to get a shot?” I said in denial. He slowly shook his head and said “I’m sorry, no.”
To say the journey home was “difficult” would be a gross understatement. I’ll write more about it later. We made it back safely. He entered his mom’s place with a big smile. (He had to REALLY go to the bathroom.) He told his siblings he was no longer going to Pittsburgh and he wanted to get some time playing Plants vs. Zombies 2 before he had to get to bed.
So now I’m trying to get an appointment with the Children’s National team for this Thursday. I had one already lined up for next Thursday but hope they can fit us in earlier. He is still on the clinical trial at National. They deduced a certain chemotherapy for the particular DNA structure of the tumor. It was one of our choices this past summer, but the only one that we could do if the other two did not work. (They encouraged us to do one of the other two.)
We are not 100% sure Josiah can do the chemo. Things have changed, and it has grown. But I do believe he will be able to do it. Please pray to that end.
I know the tumor has grown. I have seen it. I want to believe that the picture I saw was the biggest it will ever get. I want to believe that the shrinking in the ponds will continue and spread to the area that has grown. I want to believe that the doctor perceived the growth to be what was continuing and not the tumor’s destruction but he is wrong.
Please pray for us. Dr. Mason has seen these tumors many times before. The growth is following a normal pattern for DIPG. He said he was sorry for a good reason.
My hope has never been the vaccine and it certainly is not in the chemo. Our hope is in God alone. I am distraught because I thought I knew what God was doing. I was ready to celebrate and share the good news. I really was just unsure how good the news was that I got to share. But I only knew part of the story. I wasn’t prepared for this right now. I will never be ready for the tumor to grow.
Please continue to pray for a miracle. Pray for strength for us all. Last night when I left Josiah at his mom’s he told me that he was not going to miss Pittsburgh, “but Dad we did have some good times there.”
“Yes son, we did.” Lord, hear our hearts cry.
I believed God was going to do a miracle, even after this setback. God is God and I am not. We asked and trusted God to provide.
I believe God is a God who heals. He has healed people throughout history and heals people today. God heals.
A little caveat, I have heard people use a Bible verse that puts the responsibility on the person asking God for healing. The verse is set up with the following logic: God is good. God wants to heal. God will heal. God just needs you to have the faith in Him to make the difference.
They quote James 5:15, “And the prayer offered in faith will make the sick person well; the Lord will raise them up. If they have sinned, they will be forgiven.” The theology goes if a person prayed for is not well, the only variable in the equation is the person praying did not have enough “faith”. Why would God not heal? Sickness is not of God. God loves us and wants only the best for us. We need only to have faith that He will heal the sick person. Only a person’s lack of faith keeps them from receiving the gift of healing from God.
How do you know if you do not have enough faith? The person is not healed. The person needs to find more faith so their loved one can be healed.
Can you imagine if someone had said this to me during Josiah’s illness? Can you imagine if they said that to me now? Shoot. I had enough trouble keeping my stuff together when they said it to me before all my experiences.
God does not need our help. God desires our hearts. Pray for healing. Expect God to heal. But please, please send anyone to me who believes it is up to the person praying to have faith to get God to heal. I have some more words I would like to share with them.
God does not need our help. He wants our hearts. The Father is not manipulated by our actions or inactions. Yield to God all of what your heart desires. Trust in His mysterious ways believing He can do what you know only He can do.
Recent Articles: Praying |Happy Holidays