What to do?

My friend, Holly, recently asked me, "what do you do when you can't get out?" She was, of course, referring to the times when the doctor gives us the homebound word and tells us to stay clear of restaurants, Sunday school, and other children in general. So, here are a few of the pictures that I collected from the last week we were secluded from the world. Now, keep in mind that there are many videos, TV shows, computer games, and drive-thru eateries that happen in between all of this. I'm not claiming to be super mom, I'm just sharing my ideas.

Moon Sand is very fun, but very messy. You have been warned.

He asked to help. I promise. No child labor laws broken here.

We do get the wonderful privilege of being outside when it is warm enough. This is our favorite activity.

Again, finger paints are messy, but oh so much fun!

Now, please share any ideas that you moms have for fun activities with your kiddos. I'd love to have some tricks up my sleeve for another day.

Volume II

This is it. Today is the day. Michael's second volume of Tough Sayings of Jesus is available for purchase right now. It is set up for group study with questions that actually help a small group discuss more than the "Jesus" answers alone. Just as Michael does in conversation, he asks questions that make you think about how you relate to God, how you relate to others, and how God uses others to help you relate to Him. Even if you aren't in a group study, it is a book you can read on your own. Although, you will have to find a friend to talk about it with you, because it is just that thought provoking.

You can read a sample chapter from Tough Sayings of Jesus here. 

Then, you can buy Tough Sayings of Jesus Volume II here.

Back to School

Good news - Joshua's counts have rebounded, so tomorrow he goes back to school. He also got a treatment today to boost his immunoglobin, a part of his immune system.  Dr. Zeiber informed us that Joshua is OK to continue taking the same chemotherpy (6-MP). She will, however, try to be much more cautious about increasing his dosage due to his history of infection. So, by God's grace maybe we can continue our 2-month string of no hospital stays.

Also a cool moment today, since last night Joshua and I prayed specifically that Dr. Zeiber would tell him that he could go back to school. That's sort of big because, other than the fact that Joshua gets to see that prayer is effective, he is also realizing for the first time that something isn't right with his health. Up until now I'm pretty sure he thought that everybody went to the hospital, had a magic button, had to wash their hands incessantly. But now he's getting that the doctor tells us what we can do. So this is a new wrinkle in leukemia parenting that we will feel our way through.

Thanks for praying him back into real life.

More

I am an advocate for teaching sign language to children. I'm not sure that it helps with language development or any of the other things that experts say. What I do believe is that it keeps me me from going crazy at mealtime. I started teaching Joshua and Andi to use signs at around 6 months. Whenever they would make that sound that all babies make when you aren't getting the food to their mouth fast enough (Uuhh. Uuhh. Uuhh.), I would just gently put their hands together like the graphic and say, "more." With both kids I thought that my efforts were futile. I didn't see any results for at least 2 months.

But, we are so proud of Andi because she has just started using the sign for "more." She uses it when Michael is throwing her up in the air and she wants to do it again, or when I am feeding her peas and carrots and she needs another bite. It has relieved a lot of tension at the dinner table. Also, because Joshua still remembers his signs, he is very proud of her, too. Of course, Joshua thinks Andi should automatically be able to communicate all sorts of things. For now, "more" will be enough.

--We are also happy to report that Joshua is feeling really well considering his low blood counts and the isolation seems to be doing its job. No fever. No hospital. 

Tough To Explain

We had a strange appointment at the clinic today. We were told to come in and have Joshua's blood counts checked today. This a common practice when Joshua's dosage of chemo gets to a high percentage (based on weight and blood count tolerance). Two weeks ago Joshua was at 100%. The goal being to take as much chemo as is possible for his little body. 

Today we went in thinking it would be counts and home. Joshua bravely got accessed (blood drawn through needle in his port). He didn't whimper or cry and finished by saying, "That wasn't so bad." The nurses thought we were going straight home also because they took out his needle. 

Early this week, Joshua complained that his ears were hurting so I asked Dr. Zieber to take a look. She obliged, and said there wasn't an infection, but to use a decongestant at home. Sounds great, we were heading home.

As we were turning for the door, Dr. Zieber asked us to stick around and look at blood counts together. Yikes! They were bad. After looking at our records, they haven't been this bad since September. WBC (white) was 1.6 and ANC (neutrophil) 0.41. Normally, WBC is above 4.0 and ANC is over 2.0. At least, that is what we like to see.

Because the counts are so low, Dr. Zieber wants to figure out the problem. In order to do some more tests, Joshua had to be accessed again (still not a grimace). They are testing to see if Joshua's body is just not genetically made up for the kind or amount of chemo he is on. My question: Is anyone's body really made up for hazardous drugs like chemo? Joshua is also going to receive more IGG (immunoglobulin)  to help boost his immune system.

What does all of this mean? Well, a few things. First, it means we are homebound for a while. No school. No church. No Bible study. No restaurants. (Sad. Sad. Sad. Sad.) Second, it means antibiotics at home to avoid an infection and in turn, a hospital stay. Third, no at-home chemo all week to help his counts recover. Fourth, we return to the clinic next Wednesday for the IGG, the results of the testing, more blood counts, and a general regrouping to resume treatment.

Another thing that this means is that reality strikes our family again.

I say "reality" because it's funny how you can almost forget everything that has happened over the last year, that Joshua has cancer, in the normalcy of life. Then you have an appointment like today and the harsh truth of reality comes back - leukemia still rules the day. So today, and days like this, are in some ways a grieving process at least for mommy and daddy. We grieve about little things - that we can't play on the playland at Chick-Filet; that Joshua has some minor social awkwardness around kids because he hasn't been around alot of them; that we can't make real plans with friends without saying, "If everything is okay." And frankly, grieving isn't fun. It is, however, good.

Not to compare our struggles to that of Job, but it is interesting that for 7 days Job's friends came to him and sat in silence to grieve with him. That became a lasting tradition throughout Judaism, and is known as sitting shi'vah (from "shi'vah" meaning "seven.") It's a period when people come and visit with the person that is grieving but don't say anything (maybe God knows that we have the propensity to say stupid things during times of loss). I think that's a little comforting today because I believe God likes the mourning process. I think he likes it for many reasons such as:

Mourning is the way we reconcile the fact that our dreams for our lives may not square with God's dream for our lives.

Mourning is the process of coming to grips with God's sovereignty in the universe.

Mourning is a reminder of hope, even in the midst of loss.

But I like this one best today: Mourning is perhaps the truest expression of authenticity. And I think God values authenticity more than He values right answers, screwed on smiles, and perfectly Christian people.

It Was a Success!

In case you were curious, Joshua's first day back was a major hit. When I dropped him off, he ran in and didn't look back. I, in turn, walked away and didn't even cry (a major accomplishment). About an hour later, while shopping in Target with Andi, I got a call from King's Kids. My heart skipped a few beats, but I was relieved to know they were calling to tell me that Joshua was having a great time, but that his nose was running. They just wanted me to know. It felt strange to get the call and somehow, in the end, feel completely relieved. They weren't calling about a fever or about his leg pain, just about a runny nose. Now, a runny nose I can handle. Especially since Joshua has had a runny nose since he was 6 months old. 

When I picked him up, he was still playing hard and full of energy. The next 2 hours were spent recapping all of the days events from exercise class to honey pots to being the lunch helper (a task he was hoping for on the way to MDO -- great memory, little man). A big thank you to Ms. Christie and Ms. Sky for being Joshua's heroes and for making his first day back a huge success for all of us.

Our Blog World

I know that most people with a blog choose to have links to other blogs on their site. We have done the same. I encourage you to take at peek at them all because each of them touch our lives in some way, but there are two that I want to make sure you read.

James Gregory Ryan

Gage Holmes

We have never met either of them or their families, but we share a common bond. Both of these boys have the same diagnosis as Joshua. They are a few months behind him in treatment and are showing a lot bravery just as Joshua did and does. Please pray for each of their families as they complete Delayed Intensification and begin Maintenance. Pray that they will be able to balance the freedom of being out and about in a "normal" life and the fear of being out and about in a germ filled world. Also pray that the people around them would be sensitive to their fears and will continue to help to meet their needs even though the "tough" part is seemingly over. 

We celebrate with you and your families and hope that the days to come will be refreshing and side effect free!

Another Shot

Tomorrow Joshua starts Mother's Day Out again. If you remember, we started him in MDO back in September. We were so excited then, but unfortunately, the fall cold season brought on several hospitals stays and we needed to take him out of the King's Kids program. Now that we have been 8 weeks without a fever or hospital stay, Joshua's teachers are excited to have him back and Joshua is more than excited to be going back. 

Our doctor has been very encouraging that this is a good choice for Joshua. She wants for him to experience life as normal as much as possible. But normal is a bit scary, at least for mom and dad. For us, it feels like him going back is deciding it is OK to spend more time in the hospital. Even though all signs point to Joshua being a healthier boy than he was 5 months ago, it is still an anxious time for us. So, please pray for the anxiety to diminish with Joshua's excitement and anticipation and that Joshua would continue to be in good health.

My Kids

I was tagged by Amanda to write 8 things about Joshua and Andi. I will just do 4 for each one. So, here goes:

JOSHUA

1. He is very affectionate. Joshua is constantly saying, "I love you," giving hugs and kisses, and asking if we can snuggle under a blankie.

2. His imagination is nonstop. Joshua is always thinking up a new game, a new song, or my favorite, a new script. If you stay and play long enough, he will give you lines to say as you play. For example: "Mommy say, 'Try hard, little (insert animal name here). You can do it.'" or "Andi said, 'That's OK. You can take my toy.'"

3. Nothing gets by Joshua. Somehow is able to sense everyone's emotions and then he always chooses to respond to them. If I sigh, he asks why I am upset. If I am crying, even a little, he tells me, "It'll be OK, mommy." If Andi is angry, he does a monkey dance to make her happy again. 

4. He likes little moments. For Joshua, it doesn't take an elaborate production to get him excited. He is happy with a trip to Toys R Us to just look at toys or a drive to Sonic if we can all go together.

ANDI

1. She has an innate ability to find the one thing in the room that you don't want her to play with and go straight for it at lighting crawl speed.

2. She lays her head on your shoulder after you have been holding her for a while. Not because she is tired, but because she is glad you are holding her (at least that's what I think).

3. Now that we have started letting her feed herself with small pieces of table food, she wants to  do all of the feeding by herself. Can you say independent?

4. Some babies Andi's age have seperation anxiety from their parents, but Andi is just fine with us leaving her to stay with a babysitter. Andi does however, have separation anxiety from people in general. She is only happy if she is surrounded by people that love her.

Now I tag Jenni, Noelle, Carrie, Rhondi and Melissa.

1,918 Miles Later

Some people might call us crazy for even attempting such a feat with a 3 year old and an 8 month old. Even more might call us crazy for actually enjoying it. Go ahead and start calling us names because we had a blast! With snacks, tiny surprises, DVDs, bottles, and teething toys we had a fantastic trip.

The time with both our families (which almost all live within 2 miles of each other now) was great. We had lots of great food and conversation. Joshua was surrounded by cousins to play with and Andi was cuddled by anyone that could catch her.

Thank you to our very giving families for helping make our trip comfortable, infection-free, and lucrative (great gifts everyone!)

Joshua had a great time in the car, but became giddy when we told him about he hotel we were staying in the first night. Yippee for indoor swimming pools.

Happy trails, little lady!

Joshua and Andi had plenty of cousins to play with. 8 under the age of 6 at Michael's house and 7 under the age of 10 at my house. Fun times!

You will all be happy to know that Joshua did get the trumpet he asked for. Thankfully, he did not get the drum set and trombone...at least not yet.

Andi loves her Papa!

What could be better for the boys than football in the snow?

Maybe next year, Andi.

It is always good to be together.

On the way home, Joshua kept saying, "I don't want to go home. Let's stay at the hotel a little longer." This may have been code for, "I don't want to get back in the car."

That is one tired little girl. Andi slept 4 of the last 6 hours of our drive. You can't ask for a better traveler than that.

We hope you all had a great Christmas. This one was indeed a blessing for us. Joshua has now been 6 weeks without a hospital stay. It couldn't have come at a better time.

Road Trip

After a 18 month hiatus, we set out on a long trip to Texas for Christmas. We have had every combination possible except all of us together: Michael and Andi; Joshua, Andi and I; Michael and I; Michael alone; me alone; Andi and I. Our adventure has been great with lots of smiles and happy times with family. I am excited to share photos and stories when we return, but for now....Merry Christmas and Happy New Year.

Jana in Training

As Jana whittles the seconds off her mile time and I grow lazier on the couch, I wanted to remind you about the great organization that Jana is running the half-marathon for. Team in Training is comitted to raising money to find a cure for cancer and to help those whose lives have been effected by it. So if you're looking for some "end-of-the-year" charities or know someone who is, I'd love for you to consider supporting my beautiful wife in her efforts.

Just so you know she's serious, she's running close to 20 miles a week and has even started a scheduled detox of her precious Dr. Peppers. Chick means business.

If you're interested in supporting Jana, here's the link where you can do it:

http://www.active.com/donate/tnttn/kelleyfamily

Is It Just My Imagination...

We don't write about it often because it isn't fun and we are so busy while it is happening, but usually this week every month is terrible. We start steroids that last for five days after getting Vincristin (chemo) through his port, and sometimes Methotrexate (also chemo) in Joshua's spine. The appointment is usually long and arduous. The Vincristin almost immediately causes joint pain for Joshua. The steroids cause crazy mood swings, food cravings, and overall neediness. All of this together can make for 5 tough days for all of us.

The strange part began yesterday. The appointment went much faster than usual (thanks to a new system -- way to go clinic!). Joshua and I actually had a lot of fun. We played a Dora game, watched a National Geographic video and ate lunch with our sweet friend, Allison. To top all of this off, trombones played Christmas music on the Children's Hospital stage (if you aren't aware, Joshua is asking for band instruments for Christmas -- who knows?!) It was seemingly a great morning. The strangeness continued when we were told that Joshua has both an ear infection and strep throat. Mind you, he has not had any fever and has been playing and eating like a champ. 

Usually, Joshua wakes up the morning after this monthly appointment in tears, begging for food and wanting only to sit with mommy and watch a show. So, as I usually do on this kind of week, I woke up early, got Joshua's breakfast ready, pillows in place, and fed Andi her bottle so I would be ready. Instead, Joshua woke up laughing, ran into our room and said, "I think I might wait for breakfast." What? Are you seeing the strangeness with me?

This day continues to be weird. He played for 30 minutes straight with his trains, did puzzles, and then we spent time pretending with water to bake and cook with measuring cups and spoons. When Andi woke up from her nap he played pots and pans with her. Usually, during this week we avoid the kitchen altogether because of the massive cravings. Strange!

Joshua and Andi are both asleep right now and he may wake up as his normal steroid self. Either way, I am proud of how brave, strong, and kind Joshua always works hard to be during these weeks, or anytime for that matter. And, even if it is just my imagination, it was a very fun morning!

"Look at! She standing!"

Joshua's grammar is usually impeccable, but when he gets excited the words just start flying. So, when Andi pulled up on the couch and let go, Joshua let us all know about it. Of course, he said it so loudly, Andi got scared and fell hard, but it was still big news at our house.

Andi is 7 months and 10 days old. 2 weeks ago she started crawling. 1 week ago she was pulling up. This weeks she is pulling up, playing with toys while standing next to the couch, and letting go for seconds before she falls back on her bottom. It is so cute and we are all very proud and excited for her.

Life List

I think that most people have one. A list of things they hope to accomplish in a lifetime. Some of them may be written down and put in a safe place. Others only mental reminders. For me, the mental list reads closer to 1. Don't faint when speaking in public 2. Remember the correct birth date of your spouse (yes, I have gotten it wrong before) What I am saying is that none of my purposed accomplishments are monumental.

In light of my list, my husband's latest achievement is that much better. As you know from reading our blog, Michael is a fantastic writer. About a year ago, LifeWay published Michael's first book, a bible study titled The Tough Sayings of Jesus. The second volume is due to come out early next year. Well, on Michael's Life List, he has 1. Publish a good book (check) 2. Have that book appear on Amazon.com (check). That's right everyone....here it is. 

I am so proud of Michael for so many things. He's a great daddy, a thoughtful husband, a faithful provider, an excellent listener, a generous giver, and  so many more. He didn't need to be on Amazon to make me proud, but it is really fun to see him be proud of something he did. It looks really good on him.

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.