Saturday, April 30, 2011

One year.

This time a year ago, it was a normal Friday.

Playing at home, visiting Ryan at work, running errands, meeting my mom at Target to browse.

Then home for dinner, baths, more playing and bed.

Normal, right?

Except all I remember is giving Jackson a bath and then laying him down for his after-bath and seeing this...thing.

A lump. A protrusion.

Something that did not belong in my child's body.

Thankfully a friend was already on her way over, so I was able to show someone immediately (literally--minutes after finding it) to see if I was over-reacting.

I'm so glad that she didn't say "I wouldn't worry about it".

Because inside I was already worrying, wondering, praying.

I just knew in that moment that it was something. I had this very visceral reaction to seeing it...I felt nauseous every time I looked at it. Dramatic, yes. But true.

I needed to see and hear someone else's concern. It made me feel justified...that I wasn't freaking out over nothing.

Not that I have done that, ever. (Ha.)

Ryan saw it later that night and agreed we needed to see a doctor asap.

So to Saturday clinic we went early the next morning.

I'm so thankful that God made that lump so obvious to me.

I'm so thankful I followed my instincts instead of telling myself that it was nothing.

I'm so thankful that we had a very sweet doctor that morning that was very proactive and got the ball rolling.

I'm so thankful that a year later I can still hold my child, hear him laugh and listen to him breathe.

It could have all been so very different and I'm very aware of just how blessed we are.

In some ways, this date is more meaningful to me than his diagnosis date. April 30 was the day it all changed, the day that I stopped worrying about the everyday things and started worrying about what was growing in my baby.

The signs that cancer lived here are still evident.

In his fresh, fuzzy duckling head that a year ago was full of thick, unruly hair.

In his scarred body that a year ago was untouched by surgeon's blades.

In his mind that a year ago never worried about having to go back to the hospital.

In my stomach that a year ago didn't drop if he said "Mommy my leg hurts".

No, it's not over.


We still live and breathe. And we are so happy, so thankful.

Today, the boys will bounce in a bouncy house to their heart's content and hunt eggs at a family gathering.

This event was planned today not to commemorate this day that will always be significant to our little family of four, but just as a coincidence.

It's fitting though.

A year ago, I couldn't have imagined all my sweet boy would have to endure and how long the road would be.

And today...I get to watch him just be a kid.



Wednesday, April 27, 2011

It's not over.

Since Jackson has had a couple of sets of clear scans, I get asked alot "When is the party?" or "When can we celebrate?".

Let me be clear: we feel VERY happy and blessed and thankful and elated that Jackson has had not only one set, but two sets of clear scans.

However, we are not yet at the party stage.


Well, because it's not over.

When will it be over?


When he is old enough to miss soccer games or Algebra class for his scans instead of his pre-school gymnastics class, it won't be over.

When he is old enough to drive himself to his scan appointments, it won't be over.

When he has to come home from college for scans, it won't be over.

When his wife gets the call before me about the results, it won't be over.

Get the picture?

Just because cancer is gone NOW, doesn't mean it always will be.

That is the very harsh reality of the disease.


While I would LOVE to plan a party, we just aren't there yet. Maybe as time goes by and we (hopefully, prayerfully) get more clear scans we will feel more in a party mood. But at this point, we are still very aware that things could take a drastic turn in July, or October or January.

We have to be constantly vigilant about Jackson's health. Some of the chemo he received will not have a negative effect on his body for 10 or 15 years. To quote our doctor "Right now we worry about the disease and it coming back. In a few years we starting worrying about what we have done to keep it away."

Jack may not have a tumor anymore, but he has a scar from his groin to his knee.

He may not have a port anymore, but he has three scars from insertion and removal, along with permanent needle marks from numerous port accesses.

We may not go to the hospital every week for chemo anymore, but we go every ninety days for multiple scans...and if they see a single bad cell, our lives are upside down again.

For us, and so many other families fighting childhood cancer, it's just never over. I know some people can't understand that, they can't understand why we "can't move on".

And that's ok. Because you know what?

They may not have experienced what we have, or hurt as deeply as we I can guarantee that they haven't loved and lived as fully as we have either.

We remain happy and thankful for every minute of every day. Even the days that aren't full of unicorns and sunshine. Those are good days too. Because they aren't promised to us.

I consider that our present sufferings are not worth comparing with the glory that will be revealed in us.

Romans 8:18


Tuesday, April 19, 2011


Last Friday, we met with Dr. R...the same doctor that we met with under very different conditions last May. He did Jack's biopsy on May 17th and he is the one that delivered the news to Ryan on May 21st. He also put Jack's port in on May 24th.

So, last Friday he said we can get that port out anytime!

Tomorrow it is.

Tomorrow always seemed really far away.

When Jack first got his port, we were under the impression that he would have it for years. YEARS.

And, I guess if things had gone differently, he would have.

Tomorrow will be a good day, a happy day. A surgery, yes. But most definitely, a joy filled day.

{Before our appointment Friday, we started our day with some art time.}

{Don't let that coloring book fool you...the counter was his canvas.}

{Jack showing off his soon-to-be-gone port while we waited our turn.}

{The boys have gotten really good at waiting over the last year.}

{They even made up a jumping game...Brayden loves to do whatever Jackson does!}

{A celebratory what age do they start taking normal pictures?!?}

We would love your prayers tomorrow!! Check in time is at 6:00, surgery is at 7:30. Alarm is set for 4:30...ack!


Monday, April 18, 2011

The Wishing Place.

Last Tuesday, we got to go to a very special place.....The Wishing Place! It is so nice to load up in the car and get on the highway with fun destinations instead of the hospital! We were so excited. Jackson knew we were going somewhere fun. He also thought that we were actually getting on a plane right then...but thankfully he took it well when we told him we'd have to wait awhile.

The facility was beautiful, with breathtaking pictures of children enjoying their individualized wishes. Sometimes it is startling to be in these kinds of situations...where pictures of bald, sick children are normal. Not startling because of the pictures...but because we fit in. Even so, it was such an awesome experience. I truly hope Jackson is able to remember these fun times.

{Headed inside with Mrs. Billie, the Director.}

{Once he saw all of the people waiting, he got super shy. I love this picture because you can see his smile of excitement. I think he had just realized that this was all for him.}

{Everyone cheered and clapped as they went through. One of those have-to-hold-back-your-tears moments.}

{We saw this as we walked in.}

{Headed into The Wishing Tower. A super cool, very I Dream of Jeannie (a fav when I was little!) room. Mrs. Billie asked Jackson what his favorite color was and she turned the lights that color. Any guesses?}

{Green! Or...gring!}

{He wasn't sure at first and it took him a bit to warm up. I think it was all a little overwhelming!}

{We watched a video on a HUGE tv about Make-a-Wish. The video talked about how Jackson could wish to be anything, to go anywhere, to have anything he desired! He didn't really get it...but it was still so very special.}

{Jackson was telling Mrs. Billie all of his favorites...and that his wish is to go see where Mickey Mouse lives!!!!}

{On our way out, Jack got to pick a prize from the magic doors!}

{A SpiderMan puzzle! Right up his alley. And he is holding 2 of the 9(!) cars that they gave the boys.}

{On the way home, we saw a few airplanes. Jack kept asking when we get to go on an airplane and see Mickey Mouse!}

We are SO EXCITED!!! Some many families have shared their stories and experiences from their Make-a-Wish trips and every last one is just beyond amazing! We feel so blessed....for so many reasons. The people at Make-a-Wish were wonderfully kind and I am so thankful for the time they took to make this a special day for our little family.


Monday, April 11, 2011

a 3 month lease on life {also known as good news}.

Our day started at 1:50am when our power went off from the massive storms and tornado warnings we were having. The boys slept through it all thankfully, but we were up, alternating between checking the weather websites (and Facebook because that's where you get the real news) and trying to keep the house cool. No A/C in Texas anytime after March = not fun.

So during all of this my phone just dies. Totally flakes on me. White screen. I was upset because I knew people were expecting texts from me with updates and I was expecting texts from people wearing their green for Jack!

The storms finally settled down enough for us to feel comfortable going back to sleep around 2:45. My alarm was set for 4:15. Needless to say, not much sleep was had.

So we get out of bed and started to get ready. By candlelight and flashlight. I can't count how many seconds I wasted flipping light switches in my sleep-deprived state.

We got ready, then got the boys loaded up and headed for Dallas. Thankfully the worst of the storms had passed at this point so we had an uneventful trip.

We got up to the pediatric area and got all checked in and registered. Jackson was a rockstar during his port access. HIS LAST ONE EVER!!! His nurses were so impressed that he didn't cry or complain.

Then we were taken down to the MRI area. We had to do anesthesia differently this time (gas mask instead of "milk from a sleepy cow" through his port). It usually goes so well when they do it through his port, but we have to hold him down when they do the gas mask. It is AWFUL. I feel like I am suffocating my baby. The whole time he just looked me in the eyes and screamed for me to hold him. Since we are getting his port out, I guess this will be the new normal for scans :(

During his MRI, time actually passed pretty quickly. We were finally able to eat and then we took turns entertaining Brayden.

They brought Jack out about 8:40 and we headed up to recovery. He was asleep for a good little while in recovery. He snuggled on my chest the whole time and I kept thinking that I was so thankful he wouldn't remember me holding him down earlier!

We spent WAY longer than normal in recovery due to an issue with some medication that goes into his port to protect him from getting infections. Someone had accidentally scanned it (and not given it), but we were told that they had not given it (and we knew that he HAD to have it) so it was just a big mix-up and we had to wait that out. Kind of frustrating, but it's reassuring that our nurses care enough to make sure everything is as it should be.

At this point we only had about an hour until our clinic appointment, where we were hoping to have results from the scans. Since my phone was still dead (I could hear all the text and Facebook alerts and it was driving me crazy that I couldn't see them!) we headed just a few miles away from the hospital to see if they could fix it. A productive way to pass the time. Thankfully it's under warranty and a new one will be here tomorrow.

We made it back to the hospital right in time for our clinic appointment. The appointments after scans are always so anxiety-filled. Each minute that passed felt like an hour. Finally, Dr. W walked in...and when he didn't say anything right away, I think I stopped breathing. When he did start talking, all I heard was that he didn't have results yet. Since it had only been four hours since the scan started, we weren't surprised. That would be a really quick turn around. We have just been spoiled and we have never left after scans without results before today. It was tough leaving feeling so unresolved.

Fast forward a couple of hours.

Dr. W leaves a message--"no evidence of disease".

Those four words made all the little, piddly things that went wrong with our day just melt away. Those four words are the only ones that matter. God continually teaches me about perspective. So many little things can go wrong, they can pile up and up and it's discouraging. Frustrating. But really...I always feel so much calmer and more in control when I ignore those little things. When Jack was first diagnosed, I felt instant perspective. All of a sudden, I knew what was important to me and what wasn't worth the time, energy or emotion. So maybe God just thought I needed a reminder? Or maybe He was just trying to distract me from worrying over the scans? Who knows...I just know that those four words--"no evidence of disease"--served as my reminder. That's what's important. Not sleep, or my phone, or a wasted half-hour.

We are so thankful. SO thankful. It hits me a little bit more every minute that passes and I am even more thankful.

When we got the clear scans in January, we were very thankful. So many families never get a set of clear scans. But we also knew that the April scans would probably be more indicative of how his body would handle this disease. At the January scans, he had just had his last chemo three weeks prior. Now it's been three months since that last treatment. Definitely the longest stretch where we have done nothing to keep cancer at bay. So...since we haven't done anything in three months and there is still no evidence of disease, we feel much more secure with today's clear scans. And with each set of clear scans...the chances of recurrence get smaller.

I don't want to sound naive...we know cancer is an unpredictable beast. A horrible, irrational, pointless killer. We know that all of the statistics and probabilities that are out there don't mean things will really go that way. We were told at the beginning that either he will get better or he won't. Right now, and we hope always, he is better.

And we are thankful.

So, we'll be doing this again in July. He will get all three scans then: PET, MRI and CT. I feel like handling it will be a little easier then, but who knows. Until then we are going to LIVE as much as we can. Our little 3 month leases on life in between scans may not be ideal, but it is reality for us and so many other families. It can all change with just one cell, one spot, one bad scan. All we can do right now is take each day and live it to the fullest! My goal is to have even more fun than we did between January and April...and we had ALOT of fun!

About 20 minutes after we got the message about scans, we got more good news! We have an appointment tomorrow with the Make-a-Wish Foundation of North Texas to have Jack's wish granted! We are so excited and it's likely that I will be a big bucket of tears just seeing him talk about what he wants. Who knows if I will be able to hold it together once we get to actually go.

And even more good news...we have a consultation Friday to get Jack's port out!! We really thought he would have his port for YEARS, but the doctors really want it out. Since it is a foreign body, they believe it is a risk to leave it in when it's not necessary. We feel confident taking it out now that we have two sets of clear scans under out belts! That is one surgery I will be THRILLED for!

I have absolutely loved seeing all of the pictures of people in their green ("gring"!)...I can't wait to show Jack how many people wore his favorite color for him. You can email pictures to and I should have my new phone sometime tomorrow ;)

Thank you SO much for all of your prayers and love! We appreciate it so incredibly much.

{Early morning.}

{He was a little upset and he wanted me to keep my hand "right der".}

{Headed down to the MRI area.}

{Snuggling in recovery.}

{Brayden discovered the blue slushies while we were in recovery and he loved them!}

{I asked for a smile.}




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