Our Shield Delivers

Well, you guys, the Lord, and the doctors are fast today.

The doctor just called Jana - they tested the differential of Joshua's blood... nothing to be concerned about. He just needs an increase in chemo (that's nothing to worry about either).

It's not often that a victory is won so quickly; you're our fighters, and God is our rear guard.

Elevated Counts

I never wanted to write this, but here goes.

Jana and Joshua went to a regular appointment at the clinic today just to check his blood counts. The counts came back very elevated. Just a refresher on the human immune system as I understand it, here - your white blood cells fight disease and infection. So an elevated count indicates that the body is trying to fight something abnormal inside itself. This high count was one of the indicators when Joshua was first diagnosed with leukemia, and one of the things they look for every time they check his blood now. Since it is elevated, it is a possible indicator that he may be relapsing.

Then again, he may not. The cell count might also be high because Joshua has not had much chemo medicine recently (the chemo medicine suppresses the immune system and makes that number of disease fighters lower). It might also be higher because he has leftover white blood cells from when he was in the hospital a week ago fighting infection. There are a number of possibilities.

The doctor told us today that we shouldn't worry (like there's a chance in hell of that happening), that she would do a few more tests and if anything else abnormal shows up she would call us. At the very least Joshua is supposed to go in for chemo a week from today so they will check it again then.

So many of you have prayed so much for us over the past year; I'd love it if you could beat down the door with this one. We are asking God, who I have taken to calling our Shield, that this would be a false alarm. Please do the same with us, okay?

Maintenance Doesn't Mean "No Hospitals"

Hey, friends. Joshua had a fever last night and today we are once again at the Vandy Children's Hospital. Interestingly enough, Joshua couldn't wait to get here. He said he needed some more toys, so there you go - a product of our own creation. You tell him the hospital is a good place, and little by little he starts to believe you.

Maybe you're thinking to yourself, "For a kid in remission, Joshua sure spends alot of time in the hospital. So what's the deal with that?" Good question; sometimes it's easy for us to forget that even though he is very normal and seems to be very healthy, Joshua still takes chemo every single day and will do so for the next 2 years. So the immune system is still out of whack, even in this phase of treatment. I recently found a page that gives a really great description of the treatment phases of leukemia. If you're curious, you can get a 1-minute description of exactly what the treatment is, what the phases are, etc. Check it out below.

http://www.webmd.com/cancer/tc/leukemia-treatment-overview

Also, the doctors think that Joshua might need a boost to his immune system in a deeper way than he is currently getting. So they are doing a test to see if his immunoglobin has been compromised due to chemotherapy. If so, he will have blood transfusion soon. Maybe that will help with these nagging fevers he continues to have.

More later...

Team in Training

For 20 years, Team in Training has been raising money to support the care of leukemia and lymphoma patients and the research for a cure. A person can choose to run in all kinds of races on behalf of TNT. If they do, the individual takes on the responsibility to raise some money for the Leukemia and Lymphona Society, the society behind Team in Training. Joshua and our family have already been blessed by the work that TNT and the Leukemia and Lymphoma Society has done. They have helped develop many of the drugs that Joshua uses on a daily basis and that allow Joshua to function as normally as possible with a diagnosis of leukemia. Also, the society regularly reimburses us for our out-of-pocket perscription expenses.

Joshua, as you know, has responded wonderfully to almost all of the treatments he has received. Sadly, leukemia, is still the leading disease killer of children. My hope is that research can continue to combat this terrible disease. We've really started to believe and have certainly benefited from the work of this organization; this is just a little way for me to give back.

I plan to run the Country Music 1/2 Marathon on April 26th and have already, be it ever so slowly, begun my training. My goal is to raise $1800 before race day for the Leukemia and Lymphoma Society. This is totally low pressure, but I wanted to give you guys an opportunity to give just in case you wanted one. So you can click on the link to the right and check out my fundraising page. Thanks in advance! See you at the finish line. Hopefully.

Her First, His First

Yes, this was Andi's first Halloween. And, yes, she looked super cute, but it seemed like it was Joshua's first as well. For the past three years we have dressed Joshua up and given him a basket to fill with candy, but this is the year that he understood what saying, "trick or treat," could do for him. Once, we turned him loose, there was no turning back. He left the night saying, "Please have more candy. I love my candy." We all had great time.


Joshua made a great knight. Thanks to VeggieTales, he ran around the Platt's house saying, "The sword of the Lord and of Gideon!" Hail might man of valor.


Andi was happy and warm in her chicken costume. Don't think about the Chicken Song or it will be stuck in your head for days.

Needless to say, Joshua is feeling great. Poor Andi had her first ear infection last week, and handled it like a champ. Amazingly enough, Joshua has still not had a fever in 10 days. Our prayers are being answered.

6 months

Can it really be?! She is growing up so fast.

Back and Forth

Joshua has had a rough couple of days. Wednesday ended with a trip to the ER because Joshua had a fever. Fortunately his counts were high enough for him to come home. Same thing happened on Friday morning. Joshua went back to the hospital for an antibiotic and they once again discharged him to come home. Would you please pray along with us that these fevers that we have dealt with for a couple of months now would go away? It's getting old going back and forth.

It's also sort of an ever-present reminder that even though Joshua is in remission, he's not necessarily healthy. It's easy to forget that since he's done so well, but it's days like this that remind us of it.

Thanks for continuing to pray alongside of us.

One Year Later...

So today is October 18, 2007, the one year anniversary of when Joshua was diagnosed with leukemia. What an awful day. Jana and I talked for a while about what we wanted to do for this blog; we thought about doing a "thankful" post, we thought about doing a "review" post, we thought about being funny, sad, or incredibly spiritual. In the end, we decided to go with some of each. So here, on the one year anniversary, are just a few observations from the last year:

1. Joshua has a wicked cowlick. We never knew it until his hair fell out and started coming back, but he is destined for a life of frustration with barbers who cut him just a little too short.

2. People's words are not as important as their presence. One of the most meaningful times we have had was when a year ago, we sat in the hospital waiting room with some good people and watched the World Series. And we didn't talk about cancer.

3. God uses the Church to remind the Church of Him. In moments when you are tempted to forget who the Lord is in your life, God uses people in your community to remind you of Himself.

4. Vanderbilt Children's Hospital makes an incredible grilled cheese sandwich.

5. Faith is not the absence of questions and doubt. Faith is the ability to move forward despite questions and doubt.

6. Joshua is brave. We never imagined he would go through something like this, and we never imagined being as proud of him as we are for doing it with courage.

7. The common denominator of humanity is pain, and everybody medicates their pain somehow.

8. The question of "Why?" is not nearly as important as we thought it might have been.

9. Nurses could care less if you are naked. When they knock, they're coming in.

10. Joshua is teaching us to live in the moment. I think during these times you can either fall into thinking about life before the cancer, or losing yourself in what might come in the future. But Joshua lives in the now. Tomorrow he may feel bad, and yesterday he might have felt much better, but right now, there are trains to be played with and puzzles to be put together. Maybe faith doesn't so much give you the ability to face the future as it gives you the ability to live in the present without having to resort to the past or the future.

11. The second child is more laid back than the first one.

12. The Lord doesn't offer or owe explanations of His decisions. But we have come to believe that He somehow feels the pain of His children more deeply than we do. He may not offer explanations, but He offers tears.

13. Life really is a journey, not a destination. An interesting "seminary" tidbit here - the terminology "relationship with Christ" is not found anywhere in Scripture. We made that up. Instead of that, the Bible talks about a "walk." But here is the interesting thing: the word "walk" in Hebrew means "human locomotion without any indication of destination." So evidently a walk with Christ is more about the process than the end. To walk with Jesus is not to look up every 5 minutes asking, "Where are we going? What is my job going to be? Who am I going to marry? Where am I going to live?" It is to walk. Those questions come up in the conversation as you move together.

14. It is really, really great to know that you are loved.

So there you go, just a few things from the last year. Maybe you want to add yours, not about us necessarily but about your last year. How are you different? What have you observed? We'd love to know.

Daddy and Daughter

As all of you already know, Michael is an amazing father. This weekend Andi got the chance to see it first hand. Michael and Andi traveled together to see our family back in Texas. The trip was originally planned for all of us, but in light of Joshua's recent hospital stays we decided to keep him close to home. (He's doing great, by the way!) Michael flew all day Friday and is flying back on Monday, seeing lots of friends and family in the meantime. If you have ever traveled with an infant, you know this is no small task. I am very proud of Michael for tackling what few men would attempt, for wanting to spend time with his daughter, and mostly, for not thinking it is any big deal.

This was taken just before they left for the airport....not a bit of nerves on either of them.



I love the way Andi is looking up at her daddy here. So sweet!

Her Latest and Greatest

Well, Andi has been more than a champ during this last crazy month. She has gone with the flow, allowing many kind people to care for her while we at the hospital or in transition. She would like to thank the all of you for loving her so well. Here are a few of them.....Gram, Wednesday night group, Sarah, Becca, Sarah Grace, Melissa, Allison, Ms. Barbara from the clinic, Jessie and Jessie, all the clinic nurses, Jen, GCC nursery workers, Ms. Faith, CBS nursery workers and many more not named. We love you all.

Andi has also managed progress in her skill set quite quickly.

Here she is sitting up by herself. Not for very long, mind you, but sitting none the less.


Here she is getting up on her knees ready to crawl. The crawling isn't official. It is more of a lunge right now.


Finally, here she is laughing at me while I try to snap a shot of her two new teeth.

Back to Business

We are now officially through one week without fever. That hasn't happened in six weeks. Michael and I were so thankful that we both slept in (at least until the kids woke us up).

Joshua's blood counts were all way up. That is great news, but this life of leukemia is a bit tricky. Counts being up means that Joshua starts chemo all over again. They are starting him on much smaller doses at home to ease his body back into the rigor of the treatment, but next week Joshua starts his monthly treatments again. Next Wednesday, Joshua will receive intraveneous chemo, increase his oral chemo, and go back on steroid for at least five days. We haven't had to do steroids in a while because of the hospital stays. I can't say that I want to go back to the hospital, but going back on steroids is not very appealing either.

Joshua also got his first flu shot yesterday. Once again he proved to be the brave little one we all know and love. Michael and I are scheduled to have our shot next week and we are encouraging all of Joshua's sweet friends (young and old?) to do the same.

Please continue to pray that the antibiotic keeps the fever away and that Joshua responds well to the chemo dosing.

With counts high and the weather cool, Joshua, Andi and I are headed to the ZOO! Joshua is excited to see the monkeys. OOH OOH AHH AHH AHH!

Ways to Amuse a 3-Year-Old at the Hospital

Sinusitus?!

Not what we expected. After all the tests, Joshua has a really bad sinus infection. This is good news because we have answers and the doctors have a plan. Joshua was sent home with three weeks of antibiotics. If the fevers continue, a procedure to remove the build up in his sinuses will be performed. If they continue still, more tests. We will pray that the antibiotics do the work and that the hospital stays are coming to an end. We are due at the clinic again on Wednesday to check counts and start chemo again. It feels strange, but I am looking forward to a Wednesday.

We are happy to be home and are thankful for all of the prayers you have prayed.

Testing

So... writing from the hospital again. We went basically six months with no real indicents, and then we hit September. Since September 1, we have been to the ER 6 times, to the clinic 13 times, and spent 9 nights in the hospital. This is number 10.

Joshua got a good report at his clinic visit today; counts were up, looking good. Then he woke up from his nap with a 102 degree fever. Back to the clinic. Because this has happened with such frequency over this month, our doctor said it was time to take a "more aggressive approach" to finding out what's causing it. His thinking was that given the continuing nature of these fevers, maybe they are all being caused by the same thing. Now we try and figure out what that thing might be.

Just some possibilities - it might be a pocket of infection built up somewhere in Joshua's body, like in his belly or in his sinuses. And if that's the case, the infection might be viral. It might be fungal. It might be alot of things. But we'd sure like to know what it is so that it can be treated and we can quit coming back here every 2 days. Anyway, we were hoping that we could once again mobilize this army of praying friends for our little boy. There are alot of things about this hospital visit that feel weird to us - we looking for something else wrong with Joshua, there's more testing involved, and other stuff - it just feels more like the days when Joshua was first diagnosed with leukemia a year ago than we are comfortable with. So we're a little on edge.

Over the next few days, we are going to have alot of x-rays and cat scans to try and figure out what the deal is. So would you please pray that the doctors would find out quickly what's causing this fever and that it would be easily treatable once it's identified? It would mean alot to us.

We're Home

Counts contined to go up today and the doctors decided to send us home.



This was our first long stay in 5 months, and our first long stay since Andi has been with us. Obviously, we have been worried for Joshua and torn over how to divide our time between them both. After seeing Joshua and Andi react to eachother after these days apart, I am somehow thankful. I don't know if I can put the right words on what I am thankful for - thankful for both of them being our lives, but not thankful for cancer...thankful they are so happy to see eachother, but not thankful they had to be apart this way...thankful that God was still wise when the timing of cancer and pregnancy coincided...thankful we have had 4 great months at home for Joshua and Andi to learn to love one another...thankful.

God is very good to give us these moments. Today I am blessed by His tenderness.

On the way up

Joshua's counts are just that - on the way up! Even though it is a small step, we went from 0.2 WBC (white blood count) to 0.4. Doctors said this is not that significant, but I am still encouraged. Maybe we will have even better news tomorrow.

In the meantime, Joshua is having a great time. He is having so much fun with the music therapist, playing with his LeapPad, and learning to play Candy Land (a big day for a 3 year old).

Thanks for continuing to pray.

OK, So Not Just on Wednesday

Well, it didn't take until Wednesday to have another tough day. Friday, Joshua began complaining that his ear hurt and within an hour, we were headed to the clinic with another fever and an ear infection. Dr. Domm quickly wrote a perscription for Aumaxicilin and sent us on our way. I chuckled to myself because it was nice to be perscribe the same medicine as every other child with an infection. Just as we packed up our things to go, Dr. Domm said, "Hey, let's wait and see what Joshua's counts are before you head out."

Much to our dismay, Joshua's white count had dropped from 3.8 to 0.2 and his ANC had dropped from 2.89 to 0.03 in about a week. His counts have not been this low since April. Just a brief leukemia refersher here, but the white blood cells are the ones that fight infection. Chemotherapy attacks the bad blood cells as well as the good, so chemo can reduce his ability to fight off other sicknesses. Combine that with an ear infection which also uses up white blood cells, and you get a low count. The ANC is sort of a composite number that is a good indicator of his overall ability to fight infection. It's also a good indicator of how he feels. When he feels really good, that number is above 3. It's down to .2. So they checked us into the hospital, not just for the infection, but walking around in the real world with numbers like that means basically walking through a germ minefield with no protection. So here we sit in the hospital.

It's not so bad. Joshua gets to have a grilled cheese sandiwth twice a day, watch alot of TV and have everyone pay attention to him. We catch up on blogging. So it has its perks. There's also alot of time to think.

It feels odd that we have been doing this for almost a year now. If you don't remember Joshua was diagnosed on October 18th of last year. So we're spending alot of time thinking about how life is different from then until now. A future blog perhaps? Until then, we are praying for blood counts to come up.

Ugghh, Wednesday!

The Kelley family and Wednesday are done. Let me tell you about our last few Wednesdays.

8/29 - A 24 hour hospital stay with fever and low blood counts. Joshua was really mad because our family trip to the lake was cancelled.

9/5 - Another hospital stay. This time only 14 hours with fever and potential pnemeunia. But to make up for the short time, it was all spent in the emergency room. This stay cancelled a trip home for Andi and me.

9/12 - A seemingly normal appointment in the clinic for chemo and a spinal tap was complicated by Joshua's struggle with low blood sugar. This had never happened before and caused Joshua to sleep alot, sweat alot, and just feel yucky. In turn, the spinal tap was moved to the next week.

9/19 - This week included both the spinal tap and an EEG. To do an EEG, Joshua needed to sleep no more than 6 hours. Also, he could not eat 8 hours before the spinal tap. A tough day for a 3 year old.

9/26 - Next week we go back to check Joshua's blood counts. They have recently dropped due to the recent increase in chemo medications.

So there you go. Wednesdays stink, so be prepared: what will happen this week? Earthquake? Flood? Locusts? Could be. If you need to find us this Wednesday, we'll be locking ourselves in the house waiting for the apocolypse.

Better things to come

Andi recently started eating her first bites of real food. Well, not real food, the rice cereal mixed with formula that doctors recommend for first foods. As much as Andi likes this terrible display of food, I know she will love whatever she gets to eat next. Right now, when I am feeding her, I tell her about all of the great things that she will soon be able to eat. Joshua, of course, has started joining in on the conversation. He tells her about grilled cheese, cereal, yogurt, and crunchy apples. Whatever the foods are that we talk about, I think she just likes the chance to talk with mommy and her brother.

The First Day of School

Joshua went back to school on Tuesday. He was super-excited to be going back, picked out his clothes, had his school day breakfast, and along with his monkey-lunch box, trotted into his Mother's Day Out program. He had a great day, although there was apparently an incident involving his new friend Parker and an Elmo toy and some difficulty in sleeping on his big boy mat for nap time.

As for mommy and daddy, we never thought we would be "those parents" - you know, the ones that cry when the kids leave them, who remark about how empty and quiet the house feels, the ones who show up early to pick him up because they know their kid can't possibly exist without them, even for a few hours. Guess what? WE ARE THEM! I guess that's just part of growing up, for him and for us.