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.}




  1. This post and those four words make me so happy.

  2. Oh yay yay! So so happy for you!!

    I have still been pondering the port. My docs are more wishy washy so I haven't been sure what to do. Maybe we will just get it out.

  3. I am over the moon ecstatic for Jackson and your family!!!

    You will all remain in my daily prayers to ward off the evil beast!!!!

  4. I am elated for you. My heart is so happy. I had chills reading this entire post.

  5. I'm so happy for you and your family. I will keep you in my prayers always and wish the best.



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