Has Captain Blood Count Finally Met His Match?

It seems so, friends. At our appointment yesterday, Joshua's blood counts were significantly lower than they had been. They were still at a good level, but down from the exceptional levels we had been seeing.

We as a family are doing our best to enjoy the next few weeks. February 14th will begin the 8 most difficult weeks of Joshua's entire treatment. As we were looking through the list of medicines yesterday with our doctor, we noticed that all of the new medications he will begin on that day have nausea listed as their number one side effect. Also, he will probably at long last lose his hair pretty quickly after the beginning of this phase. Further, one of the medications actually causes fever, and as you know, fever is the thing that sends us back into the hospital. For these reasons, we are virtually sure of at least one more hospital stay during those weeks.

I wondered if we should wait to write about what is coming until it is closer; after all, we have talked at great length about living one day at a time and worrying about today's concerns rather than tomorrow. I guess both Jana and I after our appointment yesterday are feeling a little more militant than usual. That is to say, we believe there is a virtual army of people - many of whom have never even met us - who for some reason have been stirred by our remarkable 2 year old son. And when you have an army at your disposal, I think the right thing to do is to let them fight.

So we have a little less than a month before D-Day; I think Joshua's treatment has gone so well thus far because of your participation in our lives through love and prayer. In light of that, I wondered if we could begin to pray together in advance of these challenges. As you think about it, would you please ask the Lord for minimum side effects of chemotherapy, for no fever, and for Joshua to continue to enjoy life.

Thank you for going to battle with us.

Captain Blood Count

Christmas has come and gone, and we are still at home. Not only that, but Joshua's blood counts have continued to go up. Just as a refresher if you are not up on your leukemia terminology, "blood counts" refers to Joshua's ability to fight infection. As you know, during chemotherapy, the reason why kids have to go back to the hospital many times has to do with the fact that the medicine kills their immune system, rendering them incapable of fighting disease. We are thankful to the Lord, and to you for praying that direction, that Joshua's counts have not dropped; in fact, they have gone up to be in the counts of a normal kid. This has caused us to believe (at least for these few weeks) that Joshua is, as many of you may have suspected, a super hero whose superpower is that he is impervious to the side effects of chemotherapy. We call him "Captain Blood Count."

So many things to be thankful for in the captain's journey right now - we have not been back to the hospital; the doctors are pleased with his progress, especially the way his body is handling the chemo; and that we have a few weeks off from going to the hospital. We are bracing for what will be the next phase of Joshua's treatment that should come near the end of February. Apparently, this next phase is dramatic enough that most kids have to check back into the hospital at that time. So we are trying to enjoy these weeks when he still feels like a superhero.

On the subject of our daughter (how strange does that feel) we feel like we have now the right life verse for her. Perhaps it's selfish for us to choose a life verse for her based on the circumstances of her birth, but we're doing it anyway.

Romans 15:13: "May the God of hope fill you with all joy and peace as you trust in him, so that you may overflow with hope by the power of the Holy Spirit."

Home for Christmas?

We have had 2 days of close calls around the Kelley house. As you know, Joshua's immune system is weakened because of the intense chemotherapy he is undergoing. What would be as come and go as a cold to most kids can have a really dramatic effect on him. The threshhold for concern in terms of fever is 100.4 - at that point, we are to go to the emergency room and most likely will be admitted to the hospital for at least a week. Any fever below that the doctors consider neglible and not worth calling about.

The last 2 nights Joshua has run fever. I don't know how many people were specifically praying, but both of those nights the fever has gotten to 100, but gone no farther. That has put us on edge a little bit because to go back to the hospital at this point would mean almost definitely that we would be spending Christmas on the 6th floor. While there are certainly worse things than that, we'd really like to be at home.

On Wednesday, Joshua will begin another phase in his treatment. His weekly regiment will consist of a weekly dose of intravenous chemo and 2 oral pills of chemo, along with 5 days of steroids. It's a much stronger dose during this round, and the steroids tend to change Joshua's personality and dramatically increase his appetite. So Jana asked the doctor, "Is this the time we can expect the major side effects to occur?"

The doctor's response was interesting: "Actually, they should have already been happening." Apparently, Joshua is handling the treatments very well so far. He hasn't really thrown up yet and he hasn't lost his hair. It might begin any day, but not right now. Thanks so much for continuing to pray alongside of us; who knows? Maybe we'll be home for Christmas after all...

Hope...

Today we went to a different doctor, this one for baby number 2. Today was the day we found out if Joshua is going to have a little brother or a little sister. And the verdict is...

Girl. Dress wearing, pink loving, pony tail tying, doll playing, princess becoming girl.

That sonogram serves as a reminder that God, among other things is busy. He is busy weeping over Joshua; he is equally busy rejoicing and laughing with us as we contemplate what having another female around our house will mean. And He is busily giving hope to His people - to His kids. That sonogram is a reminder of all we are hoping for with both our children.

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.

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.