Joshua Kelley and Barry Bonds

What does Joshua have in common with the San Francisco slugger?

The answer is that both their lives would be alot better without steroids. At least we think so. Joshua was diagnosed with leukemia about 5 weeks ago now, and almost immediately he had to start taking steroids to try and help lessen the effect the chemotherapy would have on his immune system. The side effects of those steroids were tough - weight gain, extreme hunger and mood swings. But on Thursday of last week, Joshua took his last steroid, at least for a while. On Saturday Joshua played with the first toy he has picked up since October 25. And he got progressively better. He laughed again. He walked again. He became (minus some of the physical effects of the therapy) the same Joshua we knew. Forgive the over-spiritualization of this moment for us, but it was a small reminder of the fact that staggers the imagination - that all of our bodies are deteriorating rapidly. But at the same time, the real us, the children of God, are still there on the inside, unbound by physical limitations.

So today Joshua had his biggest procedure yet - the removal of his pickline and the insertion of his permanent IV. Or to him, the "magic button." All went well, and as I write this, we are back at home (thankfully, since we thought we might have to stay in the hospital). That means that Joshua has no more tubes in his arm and that he can do all kinds of fun stuff like splash in the bath. All signs point to the Kelley family being at home on Thanksgiving. We have much to be thankful for this year, the least of which is certainly not you. Tomorrow I hope you feel appreciated because we thank God every time we remember you.

Phase 2

The first phase of Joshua's treatment is drawing to a close. His next phase of chemotherapy will start this week. On Wednesday, he will have surgery to take another bone marrow test, another spinal tap, and also insert a permanent central line into his heart so that he can receive the treatments more easily. The line will be below the skin and will run from his heart to the other side of his chest. Every time they need to draw blood or give medication, they will tap into the port on the other side of his chest which will also be below the skin. It's good to have that - much less risk of infection, and easier baths and stuff because there won't be the semi-permanent IV tubes coming out of his arm like there is now.

One of the more difficult parts of all this is seeing a very different little boy than we knew 6 weeks ago. The steroids he has to take make Joshua's cheeks and belly swell. They also make him very hungry and cause mood swings. Additionally, the actual chemotherapy medicine has the unfortunate side effect of really bad joint pain. So right now, Joshua has trouble getting up and down by himself, so he doesn't like to play very much. It's tough to see him uncomfortable most of the time, either do to soreness in his joints or consistent hunger. We also know that this is going to get worse before it gets better. The second phase of his treatment, which lasts 6 to 8 months, is when most of the nausea and hair loss will occur. So we are trying to buckle in.

All of that combines with some confusion on our part about our emotions. Will Joshua be the same Joshua that he was before? Should we look at what is happening now as just a part of his journey, but not something that will define him? We just don't know. I wonder if you might pray along with us that the Lord would teach us how to parent as He does when His kids are in pain. We want to maintain a healthy level of discipline along with the compassion that the little boy needs. Thanks again for praying along with us.

Home

We are celebrating sitting at our table on our couch with our little boy today. Joshua woke up this morning and his white cell count had more than doubled over night. So they sent us home! We're glad to be here and hope it will be for a few weeks, though we know we'll be back in the hospital soon.

Speaking of the hospital, it's an incredibly interesting place. Things, like privacy, that you previously valued quickly don't seem that important to you. For example, I had a conversation with a nurse in my underwear this week. (She sort of came in whenever she wanted.) The other intesting thing is that the 6th floor is a real community in and of itself. We have lots of new friends with sick kids. There does not seem anything more effective in removing boundaries than a hospital waiting area. There's not rich or poor people, or black or white people. In that respect, the 6th floor is pretty unique, and maybe even a little prophetic. So... that's one good thing about being there.

The bed's not so good, though.

"So... Why Are We Still in the Hospital?"

We are asking ourselves that same question. After all, the treatment looks really good. His body is responding well. We hit the magic 5% mark and then some. WHY ARE WE STILL IN THE HOSPITAL?

The answer is the cell counts. Chemotherapy does a great job at killing leukemia cells; unfortunately it also does a good job of killing white blood cells and other cells necessary for Joshua's immune system to fight off infection. While his body is responding, his cell counts are still low. If we went home now, it would be dangerous for us because Joshua could not fight off even the slightest infection. So we wait.

And we will likely be spending alot of time in the hospital particularly over the next year. One of the things that has had to change in our understanding is that "remission" does not mean the same thing as "cured." Even though Joshua is technically in remission, that makes very little difference in his treatment. He will still have to have chemotherapy every Friday or Wednesday. He will still have all the side effects of that chemo. We will still battle this for at least 3 years. And this is the first of many extended stays in the hospital. Every time Joshua gets sick we will pretty much be back here because of his body's decreased ability to fight disease. The bone marrow that initially produced the leukemia cells still has to be fixed, and that will take some time of chemotherapy.

Thanks for hanging in there with us. Thank you for celebrating with us and for also trying to understand with us how we can have such good news but still have such a long journey. Thank you for being on the journey with us. More soon... hopefully from home.

Remission

Thank you for praying. Apparently it is a little easier to get news inside the hospital, where we will likely be until at least Monday. But because we are here we got Joshua's test results from his latest bone marrow biopsy back. If you will remember, we were praying for 5% or less of Joshua's cells to be lymphoblastic, or affected by leukemia. The doctor let us know that when she looked at the biopsy, she scanned through all the cells shown there. She found 2 cells, not 2% of cells, but 2 cells only that were lymphoblastic. The word she used was "amazing."

What does that mean? It means we first and foremost have cause to celebrate, because Joshua is now considered to be in remission. It means that his body is responding very well to the treatment. That also means his overall prognosis is very good at this point. Thanks so much for praying toward this end for us, and our Father in heaven has been stirred into action by the prayers of his people.

We want to have that moment of celebration even though this great news does not mean that the journey changes alot for us. It's still 3 years of chemo and treatment and ongoing hospital visits and stays. Additionally, today Joshua showed some of the first real side effects of the chemotherapy. He had a treatment yesterday and has been sick at his stomach today and has thrown up. Nevertheless, we continue to be confident in God's plan and will, and also in this mighty community of family He has given to us to walk together. Together.

Halloween

Happy Halloween from the 6th floor at the children's hospital. Fortunately, there were no evil-doers around, but if there were, Spiderman was ready to take care of business.

We are still waiting for Joshua's cell counts to increase, so we will likely be in the hospital at least until the end of the week.