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.

When we left the hospital last time, nurses said that Joshua would probably be back in the hospital about ever 4 months with some type of fever. Now, almost five months later, we have made our first trip back.

Tuesday night, Joshua had a rough night with lots of coughing, but no fever. Then, Wednesday afternoon, the fever hit. At 4:30, thirty minutes after the oncology clinic closed, we made our way to the Emergency Room. This time was much different. We had to pack up two children and call to have a friend help with Andi. (She was a champ. Not a wimper as Allison packed her up to leave the ER.) It was also different because of Joshua's increased independence. He explained to the nurses how to take his temperature and access his port. He also told all of his old nurse friends about being a big brother and how great it is to pee pee in the potty.

Now, less than 24 hours later they are sending Joshua home filled up with lots of love and plenty of antibiotics. We were surprised to be sent home so quickly, but his blood counts were on the way up and Joshua was still running and playing. It was strange and wonderful to no longer be high maintenance at the hospital.

What can we say?

She's wonderful!

We've been looking for the right thing to blog about Andi, but have been at a loss because she seems to do everything so well. She sleeps all night. She takes great naps. She eats well. She smiles easily. She's even giggling with a little tickle or song from her brother.

She does cry occasionally, but that can easily be changed with a good nap or something to eat. I guess she takes after her mom that way.

Good Hair Day

If you knew Joshua before diagnosis, you know that Joshua had great, rock-star hair. If you doubt, check out our first post from October. It is my favorite picture of Joshua. While It was hard to watch Joshua's hair go, we knew that it meant the chemo was doing its job.

Now, months later, Joshua's hair is coming back in full force, cowlick and all. It is thick, very blonde, and oh, so handsome. Sometimes it is difficult to move on with life when it was so tough for a while, but Joshua and his great hair make it impossible to linger. Thank goodness!

"I'm 3. Today, I'm 3!"

Joshua is so excited to be a three year old. People have been telling him Happy Birthday for about a week now. So, when he woke on the actual day (Monday) he kept repeating, "I'm 3. Today, I'm 3!" as if it was too good to be true.

On Saturday, Joshua and many of our friends went to the Nashville Sounds game where Joshua was the Vanderbilt Children's Hospital Ambassador. He was asked to throw out the first pitch and was really excited to do so. We stretched him out beforehand, made sure his arm was good and loose, and threw some warmup pitches near the dugout. Then the moment came.

Now, if you were the Nashville Sounds, and you wanted to make a 3 year old feel comfortable on the mound, the solution is obvious: move the mascot to be the catcher! Right? Wrong - Joshua HATES 2 things very equally - squash, and people dressed in costume. It went south from there, with Joshua yelling, "I don't like him! I don't like him!" and Michael granny pitching the ball towards the home plate. He seemed to be okay once he got an ICEE in him though.

The rest of the night, though, he was pretty well obsessed with Ozzie's location.

Beyond his big pitch, Joshua got a birthday cupcake and a Diego scooter earlier that day - Muy Bien!

We are so proud of Joshua and are excited with him that he is 3!

Going "Home"

This week we made our first trip back to the Texas Panhandle since last October. We saw 2 great grandparents, 4 grandparents, 6 aunts and uncles, and 10 1/2 cousins (one on the way). We had a great time with some really great experiences. Although, Joshua and Andi were a bit overwhelmed by all of it, in the end they warmed up to everyone.

The kids were great on the airplane coming and going. I actually think I will do it again soon.

Kristy showed the cousins horses, pigs, and cows. Joshua handled it like a pro.

Joshua was really brave to go down the big water slide with mommy and Aunt Amy.

Papa and Joshua enjoyed playing together.


Caleb and Joshua entertained Andi while Luke and Parker showed what they had learned during swim lessons. Way to go guys!
We are excited to see you all again soon. Thanks to everyone for making us feel at home all over again. We love you!

First Flight

This weekend Andi and I flew to meet my parents in Houston. It was a great trip and we had so much fun with Papa and Nana. Andi, as usual, was a delight throughout the entire trip. When we arrived in Houston, Papa and Nana were there waiting for us. Andi immediately started smiling and cooing while Papa held her and Nana snapped photos. It was a very sweet time. The weekend was a success and I am thankful mom and dad let us be apart of it.
Joshua, Andi, and I leave Tuesday for TEXAS! We will share pictures and stories when we get back. We can't wait to see everyone.

Angel Heart Farm

Tonight we visited a great place called Angel Heart Farm. Tracy, the founder, is a cancer survivor, and now keeps her farm as a place where kids can come for a great time. She regularly invites patients from the Children's Hospital out for burgers, hot dogs, and ponies. Above these special nights, kids like Joshua are welcome out there all week long to ride. We had a great time and Joshua got a roping and riding lesson on Katarina the Horse (I would have preferred for him to ride Rocky the Horse, but whatever.)
After this week's appointment, Joshua had an emotional and tiring weekend of steroid and chemo recovery. We rejoice in the victory of being in remission, but remember that we have a long road still ahead of us. 23 more monthly appointments that include steroids, chemo, and a touch of anxiety about what the counts will look like this time. People like Tracy and places like Angel Heart Farm help us get through these long weekends. It was certainly good to be with other families that, like us, are enjoying life at this stage of treatment.

Veggies

We recently joined a farmers co-op (I think that is what it is called). Every week we pick up a half bushel of fresh vegetables and split it with our dear friends, The Platts. We are now planning all of our meals around squash, zucchini, onions, strawberries, cabbage-- you name it. Our family has always enjoyed eating vegetables, but buying them from local farmers never really worked out, until now. I have seen other families blogging about their experience and I thought I should give a glimpse of ours. We are eating stir-fry, grilling kabobs, sauteing squash, baking breads, and topping cakes and cereals with yummy fruits. Joshua isn't quite sure if he likes our new menus, but he loves to play in the big box.

Sweet Smiles

I have not had much time to post any big events, but I wanted everyone to get a chance to see how much Andi has grown and how beautiful her smile is.

2 Weeks

Today, Joshua and I took Andi to her two week well-baby appointment. Joshua has not been to this doctor's office since October and he was so cute being the big brother today. He kept saying, "Oh, I remember these toys," and "It's Ok, Andi. No pokes today." These phrases were followed by a very grown up laughter. It reminded me of the first time you visit your elementary school after leaving. The bathrooms seems so small and you feel so big. Joshua certainly showed that he was quite the professional today.

The doctor had nothing but great news about Andi. She now weighs 7lbs 15oz and is 21 inches long, both good signs of healthy growth. She is doing all of the 2 week old things. She coos and smiles at nothing. She is sleeping when we want her to eat and fussing when we want her to sleep. All the normal stuff. It feels really great to be normal!

On another note, please pray for Joshua's friend from the hospital, Charlie. He is now having complications with his recent transplant. Please pray that the very strong medicine he is now receiving will be effective. Charlie is really uncomfortable and actually cannot eat right now; these are hard days for him and his family.

Andi Hope Kelley

Here she is, friends!

Andi Hope was born at 8:30 pm last night. She was 7lbs, 10 oz. and 19 inches long. Jana's labor was relatively easy; she only had to push for about 25 minutes even though we were there all day. She looks great, feels great, acts great - and Joshua loves having a little sister. This morning he ran into the room saying, "Where's Andi? Where's Andi?" He held her and hugged her for about 10 minutes, then he wanted to go feed the ducks at the park.

What an interesting way to celebrate everything that has happened in the last 9 months. Our new daughter, a consistent reminder of God's redemptive work in the world, and her big brother, the cancer-fighter, a reminder of God's faithfulness to His children.

We thought this would be an appropriate time to transfer this blog from being "Joshua's Journey" to "The Kelley's Journey". We are going to start using this as a family blog rather than exclusively posting about Joshua's treatment. This is a good time to do this because we will not be posting about Joshua's leukemia as often because he has moved into the maintenance phase. So we have been sending out an alert email because so many of you have wanted to know how to pray for Joshua. We will still do that when the update concerns Joshua's treatment or prognosis, but we will also be publishing other stuff about our family in the meantime that we will not send out an email reminder for. If you want to, you can book mark our page and check back regularly, or you can just know that we will let you know when there is more news about Joshua.

It would be impossible to thank you for walking alongside of us for these months of treatment. Thank you anyway. Maybe you can look at Andi, as we do, as another tangible example of who God is and who we are in Him, the fact that He is working positively, creatively, and wonderfully throughout all circumstances.

A New Grocery List

One of the things that happens when Joshua's blood counts drop is that he has to be put on a restrictive diet. On that diet, he can't have fruit because of the rare case that there might be some bacteria in it. It's always a good day when his blood counts are up to the point when he is not 'neutropenic' meaning he is restricted on what he can eat.

Last night he destroyed pineapple, bananas, strawberries, and grapes.

Good News, Friends

Delayed intensification, a.k.a. the rough 8 weeks, a.k.a. the hardest part of treatment, a.k.a. living at the hospital - is over. And it went out with a whimper rather than a bang. We expected that Joshua's blood counts would once again bottom out before he got to move into the new phase of treatment - maintenance - and apparently they did, but they did not cause him to have any fever and consequently no more hospital time. That's great. Wednesday he officially begins the maintenance phase that will last for about 30 months, or the next 2 and 3/4 years or so. During that time, he will still be getting chemo, but most of it will be given at home with regular clinic visits. Just as a practical reference, it is during this phase of treatment that kids go back to school if they are of age.

On another note, we thought Joshua was going to have another bone marrow test on Wednesday to chart his progress and give us some exact numbers about the leukemia that hopefully does not exist in his body any more. He will not have that test. According to the doctors, there is no reason based on his other blood work, labs, etc., for them to suspect anything out of the ordinary is happening in his body, so in their words, "No test needed." I guess we would like something a little more definitive than that, maybe because it's more dramatic, but we'll certainly take the oncology team saying that we don't need to have that test. We are operating under the assumption, then, that Joshua is fully in remission, and that he is not undergoing chemo at this point to necessarily fight the leukemia as much as to maintain and fix the bone marrow so that he does not relapse.

It seems almost trite to say, "Thank you" to you, the army of friends who continue to stand beside us, because the Lord has been moved to action because of your relentless badgering. There is a strange story in the gospels about the judge who is stirred into action because of the annoying woman who won't shut up. She just keeps asking, and asking, and asking for justice. In some way, that's supposed to be like our prayers except that God is not grudging in His responses and does not find us annoying.

In my imagination, I'd like to think that the Lord heard time and time again about this little boy - who incidentally shares a name with His own son - and that so many people had talked about him and thought about him and prayed for his well being that there was no other option than for Him to act.

Recovery

Well, friends, we are reaching a milestone in this journey. Joshua was released from the hospital on Friday after receiving his last treatment of the delayed intensification phase, or the "rough 8 weeks" as we have been calling it. The chemo he got on Friday will not really affect his blood counts until about a week after its administered, and at that time will probably cause fever and make us have to check into the hospital again. But at least we know that we will be checking in to recover from the bad 8 weeks.

Where do we go from here? Well, we're not exactly sure. His treatments will continue for another 2 to 2 and a half years, but they will become increasingly less frequent. We will also in the next couple of weeks have another bone marrow test to know exactly where we sit in his overall progression of healing and battle against leukemia. So there is still alot to go.

But today, Easter Sunday, Resurrection Sunday, is a day to celebrate. Joshua feels fine. He looked for Easter eggs today. He put on his Superman outfit and battled the forces of evil that reside in our couch cushions, all the while yelling, "He is alive! He is alive!" I'm pretty sure Joshua doesn't really know what that means (if indeed any of us really do), but maybe in some way his experience is a tangible reminder that Jesus was, is, and will be making all things new.

A New Room

Yesterday, while playing in the playroom and waiting for music therapy to start, we received the news that we would be moving to a room outside of the mylosuppression unit. If you remember, the mylosuppression unit allows Joshua to move around in the hallways even when his counts are low because there is a special filtration system to protect him. There was a kid that needed a transplant that needed Joshua's room. So I guess it's good that Joshua is the healthiest kid, but bad because the healthiest kid got bumped. Though his new room is great, without that special air system, he is confined inside it. This is difficult because Joshua asks often about going to the playroom, going on a walk, or seeing other children. But, of course, Joshua makes the best of each day given to him. We are making up new games, rearranging the room, and finding new ways to explore the same space again and again.

Joshua's counts are up and he is eating again - both good signs of another short trip home. Tomorrow Joshua will receive more chemo and another spinal tap. The effects of this chemo will most likely come sometime next week. Thanks for praying about his fever; he seems to have gotten over that and is enjoying life more now. After tomorrow's treatment, we only have 1 more treatment during this particular phase. Hopefully his counts will not fall so much so that the last treatment has to be delayed any more.

A Moment to Celebrate

Today was a fun day of anticipation and a break from the hospital for me. Andrea Hope Kelley will join us within the next 5 weeks and our sweet friends showered her with gifts and love today. We want to thank all of our friends for allowing us to pause and remember the blessings to come.

We are still waiting for Joshua's blood counts to come up again. The doctors have delayed his treatments until his fever goes away and he is a little healthier. It makes us a little nervous because it looks more and more like this phase of Joshua's treatment might overlap with Andi's due date. Hopefully not - we'll see soon. FYI - May 4th is the due date.

Topsy Turvy

After spending only 48 hours in the hospital, we were discharged! Good news, right? We knew that Joshua's counts were low and we would be asked to return if a fever presented itself, but we had no idea that we would return after only 7 hours at home. Needless to say, it has been a very frustrating and long 24 hours. Even though we left the hospital only hours before, we had to go through the emergency department, only to return to the exact same room.

Joshua now has some kind of respitory infection with a consistantly high fever that is making him very uncomfortable. He is now on 3 different antibiotics and will still continue his chemotherapy tomorrow. Because his counts are so low, he has an infection, and still faces at least two weeks of intense chemotherapy, we will probably remain in the hospital for some time.

Please pray for his fever and the infection to go away since that seems to be the source of most of his discomfort.

It Was Fun While it Lasted...

Indeed it was. For a week Joshua lived it up, played in the dirt, climbed hillls with daddy, and hit the baseball. This afternoon, as Joshua was getting sunscreen on to go outside again, we got a call from the doctor. Apparently one of his blood samples from this week revealed he had some type of bacterial infection and they had decided to admit it to the hospital. So here we are again, except this time, Joshua doesn't feel bad at all. He will be on antiobiotics for a few days and that should take care of his infection.

However, working against us is the fact that his ongoing chemo treatments progressively lower his blood counts. So while we are really only here to be monitored and take antibiotics, his counts might be low enough on Tuesday or Wednesday (when they might release us) to hold us here until they come up again. And that will probably be at least 2 weeks. So it looks like it's probably either really short or another long one - your guess is as good as ours at this point.

But here's something really cool - because of Joshua's bad immune system, he really can't be around any kids his age because, let's face it - they're all sick. But here, in the hospital bubble, he has friends. He was really excited this afternoon to come back tot he hospital because he knew he would get to see and play with Charlie and Killian.

Incidentally, from 6:30 - 7:30 tonight Charlie and Joshua literally ran in circles around the 6th floor yelling, "We're running!" Even now, when I'm typing this, Joshua is falling asleep singing a song about Killian.

Emergency Room

After 5 wonderful nights at home, we are sitting in the ER again. Joshua's temperature started to climb at around 6pm tonight and by the time we reached the hospital, it hit 102.7. It feels strange for this to be normal and to be prepared for this event. We had bags and toys packed and were in the car before the doctor could call us back. We walked into the ER and went through all the regular steps of signing papers, taking vital signs, and telling our story. The thing we can't seem to understand as normal is the waiting. After 4 hours we still knew nothing about our status here at the hospital.

Finally, after 5 hours, we know that Joshua's counts are good and they are letting us go home after a few more tests and some antibiotics. We will, of course, go into the clinic tomorrow. Most likely, we will start the "hard stuff" and will get a few more checks on what is causing the fever. Hopefully, we will be home tonight by around 2am and in the clinic tomorrow by 9am.

As normal as any of this may seem from time to time, it still takes a huge tole on our emotions, and obviously, our sleep.

Packing Up for Home!

We are at home now. We know that we will have to check back into the hospital. Hopefully, we will have 2 good weeks at home.

Mixed Emotions

There was good news and bad news today. First of all, because Joshua's blood counts are not high enough, he is being delayed a week before starting the next round of chemo. The good news about that? This gives Joshua another week to heal and be stronger before we start again. He already looks better than he has in 3 or 4 days, giving us all alot of relief. The bad news about that? This puts us a week longer in Delayed Intensification and a week closer to my due date.
Delaying treatment is very normal during this schedule. In fact, most A.L.L. patients (Joshua's kind of leukemia) have already had to pause several times throughout their treatment. It is also possible that this is not our last break during these few weeks. We are thankful that Joshua will have another week to recover and get rid of some of these ugly hurts before being hit again.
My due date is May 4th. Seven weeks from Friday. We are excited about our sweet baby girl joining our family, but nervous about the timing of her arrival. I know that God is not surprised by leukemia and certainly not surprised by my pregnancy. I also know that Joshua will be an amazing big brother no matter when she comes. Please pray with us as we prepare for the coming weeks and months. Pray that we will allow God to orchestrate them, knowing He is caring for all of us along the way.

Life Goes On...

Life continues in the hospital. Day 14, and no real end in sight. Though blood counts continue to improve, Joshua has develooped a pesky fever that comes around most afternoons. With each fever, the nurses take a new blood sample to test and see if it is related to an infection that would be more serious than a run of the mill fever. We cannot go home until his counts are at a safe level and he has been fever-free for 48 hours.

Some more bad news - Joshua is in alot of pain right now. His joints ache, he has developed significant sores in his mouth and throat as a side effect, and has the usual pains of his treatment. So the days are not great. In addition, we are emotionally gearing up for the fact that our time left in the hospital seems to likely be measured in weeks rather than days. On Wednesday Joshua starts the "hardest of the hard", medicine that would knock a kid out even with a healthy immune system.

On the positive end of life going on however, a game of pickup baseball broke out on the 6th floor yesterday. Joshua, Charlie and Killian took on the nurses with plastic bats and balls. Needless to say the 2-year-olds won out in the end. That was a bright spot for the little boy, as is music time in the playroom. He really enjoys himself there and it takes his mind off of what is happening to his body.

Just wanted to report to you guys what life was like with all the good's and bad's right now. Every day is difficult, but every day is one day closer to the end of these eight weeks. We are praying for God's continuing strength for the moments, especially at night, and are also praying for the effectiveness of treatments. If you run a search online for leukemia and start reading people's blogs about it, you don't have to look long to find stories of people who have had to repeat these 8 weeks numerous times because the first round of treatment wasn't as successful as it needed to be. Really don't want that to be us.

We continue to hope and check off the days until better ones are here.

A Haircut like PaPaw

Joshua now officially has a haircut like his PaPaw, which for both of them is pretty easy to care for. With his hair falling out (Joshua, not PaPaw - that happened long ago) we decided to trim it down to keep it from getting in his face. It was a hard decision because we both love Joshua's hair and have since he was born. But it will come back - just like his strength, laughter, and playful spirit.

Not much change in blood counts and we are therefore still in the hospital. Day 10. Please continue to pray for him in that respect. Also, as a reminder, this is week 4 of the "difficult 8 weeks." After those 8 weeks, Joshua will have a bone marrow test to determine just how effective the treatment has been. Would you please begin praying with us that his bone marrow would be cancer free and that he would be able to move freely into the maintenance phase of treatment? Thanks. A bunch.

A Week in the Hospital

We have now been in the hospital for a week. Joshua shows some mild improvement, though he is still radically uncomfortable both emotionally and physically. We are tired, too, so I can just imagine what is weighing on him. His hair is definitely going now, so pretty soon we will do the buzz cut. We do have some specific things to ask you to pray for our little boy though.

1- Please pray for his blood counts to increase. This will make him feel better and also mean that we can leave the hospital. As he has no infections, we are just waiting here for the counts to increase, which will mean that he has enough of an immune system for us to go home.

2- Please begin to pray for the next 4 weeks. A week from Wednesday Joshua starts the "really hard" medicine; it's likely that we will have to check back into the hospital again for more of the same - that is if we get to go home before then.

3- Joshua's mental and emotional state. Clearly he is afraid of alot of things right now, and who can blame him? We would love to see our little boy laugh and play again soon.

Did we ever tell you what the name "Joshua" means? It's a good meaning for us in these days. "Joshua" in Hebrew means "The Lord is Salvation." That is striking tonight to me because the Lord IS salvation. Not BRINGS salvation, but IS salvation. Salvation is His essence. He is in the business of being present with His people, taking on their pain as His own, giving His strength as their own - it is who He is. I just thought that was a good thing to keep in mind these days.