Back at the Hospital

We were thankful for our 9% today and then noticed that Joshua felt a little warm. The doctors had told us that whenever he has a fever of more than 100.4 that we need to call. His was 100.8. The danger with chemotherapy is the radically decreased immune system which allows your body to fight off disease. The long and short of it is that a relatively minor disease for a non-leukemia kid is something much bigger for Joshua.

So... we were admitted back into the hospital. It was tough, not because we didn't think we would ever be in the hospital again, but because we didn't think it would be so quickly after our discharge. We will most likely be here at least 48 hours as the doctors make sure that there is nothing major causing Joshua's fever.

9%

It's not the 5% that we were hoping and praying for, so there is disappointment. I don't want to say something like, "It's not 5%, but..." and act like we weren't asking the Lord for the number of leukemia cells to be less than 5%. We were, and it wasn't, and we're disappointed.

Now that is out of the way, here are the reasons to be thankful and rejoice. The 9% is a huge stride; it's down from his original bone marrow test which revealed 80% of his blood cells were affected by leukemia. The doctor said that although we didn't hit that mark, the treatment is still going just as it should, right along schedule. For Joshua to hit the 5% mark after one week would put him in a small minority. She thinks that one more big treatment like Joshua had on Friday will do the trick to send the leukemia into remission. We should also make sure and say that regardless of when he hits that percentage and remission, the treatment is not shortened at all. It's still 3 years of decreasing amounts of chemotherapy, so the journey really is just beginning.

A good friend from Birmingham wrote this as a comment in the blog a few days ago: "I've learned that trust in God during hard times is choosing not to say "I'm hurting, but I trust God". It's saying instead "I'm hurting, AND I trust God"."

I think that Becca is right. Trust and pain seem not to be mutually exclusive. Neither do faith and doubt. Neither does healing and process. So we would trouble you to continue to pray along with us, week by week - this week praying that the chemo would continue to do its job and that soon Joshua would hit the magic number. We believe that God's wisdom is bigger than a percentage and that His love and grace is big enough for us to feel pain and disappointment in the middle of it. I know you do, too. Thanks for continuing to walk with us.

Waiting Until Monday

No test results yet. Many of us have been praying the simple and profound prayer for Joshua, "5%, Jesus, 5%." We'll have to pray it for a while longer. The doctors told us that the results would be here today; they will not be ready until Monday morning. So we wait. Joshua came through his anesthesia well, though, and woke up hungry. You can see his progression from taco, to cookie, and ultimately, ice cream.

There are so many passages from God's word that come to mind right now as we consider the 5%. Will it be more? Will it be less? Do I really believe it will happen? Do I not? What place does trusting in God's will have in all this? Some of those are questions that are not meant to be understood, just meant to be asked. One passage that is of particular concern to us in the midst of those questions is from Mark 9. It's a story of a father with a sick little boy who wants to believe so badly, but is honest with Jesus about his inability to do so. He ultimately says, "I believe... Help my unbelief." And that seems to be what Jesus was looking for - someone who trusted Jesus enough to tell him that he did not trust him fully.

So as we look forward to 5%, we are trusting in the Lord, and trusting Him to make up in us the parts that don't fully trust yet. We'll let you know.

Preemptive Strike

Joshua got a haircut today. We did this for both he and us, since we know the day is coming when the effects of his chemotherapy will be more visible. During the next 3 years, some tough things will happen. The side effects of his treatment will include hair loss, sickness, lethargy, mood swings and most importantly, a dramatically weakened immune system.

This last one will cause the most difference in our family's life because it will change what we do every day. Joshua will no longer be able to go to school or be in childcare at the YMCA or at church. Since we go alot of places together, this is a big adjustment. Joshua has lots of friends and will miss being part of their lives.

We tried to take the bull by the horns today with the haircut - the first of many. Joshua is excited, however, to soon have a haircut "like Papaw's."

Small Victories

We are at home, dismissed from Vanderbilt Children's Hospital. It's funny to celebrate something like that because we know that it won't be long before we have another hospital stay. In fact, our doctors have said that for the next 3 years we need to have a hospital bag packed at all times.

But you still celebrate, don't you? One moment at a time? One victory at a time? That seems to be what Joshua does, and maybe even how Jesus would want us to live. We have often wondered how you can possibly live in such a way where you do not worry about tomorrow because today has enough worries of its own. Perhaps the answer is to be fully engaged in the moment - the present - even though you anticipate the struggles that will come. This is a good moment.

While you celebrate in the present with us, would you please pray towards the future, too? Friday is another bone marrow test, and the magic number is 5%. We are asking the Lord that Joshua's leukemia cells be less than 5% of his blood cells. If that is the case, he will be classified as an early responder to treatment. We hope to celebrate the moment again on Friday with you.

Grace and peace.

Spinal Tap Results

Today we got the results back from Joshua's spinal tap and bone marrow testing. The bone marrow revealed what the doctors were pretty sure of already, that Joshua has acute lymphoid leukemia (ALL). The spinal tap was a test to see if any of the leukemia cells had gotten into his spinal fluid and therefore up to his brain. We were thankful that the test was negative; no cancer in his spinal fluid. Also, his numbers seem to indicate that he is responding well to the chemotherapy so far.

The world can change and be brought into perspective very quickly, and sometimes more than once in a week. On Wednesday everything we had worried about in life suddenly seemed insignificant, and today we were thankful for something that we never thought we would have to be thankful for. Joshua's world, too, is really different than it has been and it will be for sometime. But he is teaching us how to be thankful.

He, for example, is thankful when the play room is open and there are trains to play with. He is thankful for 15 or 20 minutes during the day when he is not hooked to his IV. And he is thankful when his friends come to see him. I'm hoping that one of the things that the Lord does in us during this time is develop a consistent perspective of abundance rather than want. For example, there is a little boy on our floor who has a different type of leukemia. His mom is bracing for a 10 week stint in the hospital and the recovery from a bone marrow transplant. Our life is comparatively abundant; however, there is still work in prayer to do.

On day 7 of the treatment, that is Friday, Joshua will have another bone marrow test and at that point, the doctors will either declare him to be an early reponder or a late responder to treatment. If he is classified as an early responder, that essentially means that his leukemia is occupying less than 5% of his cells and there is a different treatment track. Would you pray along with us that on Friday his test would reveal that the chemotherapy has indeed been that effective?

One of the verses that we like these days in trying to develop this attitude of abundance is Psalm 112:7: He will have no fear of bad news; his heart is steadfast, trusting in the Lord.

Hospital Part 2

Hospital

This is the front of Vanderbilt Children's Hospital, one of the top 20 in the world. We are thankful to be about 20 miles from a place that was built, endowed and is maintained for the healing of kids. It is 11 floors of kids trying to get better. It includes an indoor fish pond, a stage where people fm the Nashville Zoo come and do demonstrations, and playrooms on every single wing.

Diagnosis

On Wednesday, October 18, I took Joshua to his peditrician in Cool Springs. He had what we thought was a rash on his stomach, and were sure that the doctor would give us some cream or an anti-biotic. When we saw the doctor, he was concerned that the "rash" was actually not a rash, but something more serious. He took some blood from Joshua, and came back and told me alot of stuff that could actually be causing this. What we thought was a rash was actually something called petekeai, which are capillaries bursting below the surface of the skin.

The blood test revealed that Joshua's platelet count was low and his white blood cell count was high. The doctor told me a few things that might be the root cause of this, and it was at this point that he first said the word "leukemia." He routed us to the hematology department at Vanderbilt Children's Hospital. Jana left school and met us there. They took some more blood and then the doctor confirmed the diagnosis - Joshua has leukemia.

We are learning at least some of what that means. Essentially, leukemia is a cancer of the blood. The bone marrow is responsible for producing the different types of blood cells, and in Joshua, something has gone bad in the bone marrow. He is producing cancerous cells and that needs to be corrected. So after we checked into the hospital on Wednesday, Joshua began chemotherapy on Thursday. He had medicine injected into his spinal fluid to eradicate any cancerous cells that were in that fluid which flows around his brain. He also took medicines orally and had some more injected in through his IV.

Chemotherapy basically has two purposed (as we understand it so far). The first purpose if to kill the cancerous cells. Unfortunately, in killing these cells, it also kills the good ones. That's why chemo patients become more susceptible to disease and infection; their good, disease fighting cells have been killed off along with the bad ones. The second purpose is to try and correct the problem inside the marrow so that they don't keep on producing bad cells.

Amazingly enough, there is chance that Joshua could be in remission by day 7 or 8 of chemotherapy. That would mean that he has less than 5% of his cells that have been affected by leukemia. Regardless of how quickly he responds to it however, he will have treatments for the next 3 years; most of that time hopefully will be spent doing prevention and maintanance.

We hope this blog will be helpful for you as you walk along this road with us. Thanks already for your love and support.