Monday, October 31, 2011

Getting Ready

We've been very busy driving to doctors appointments the last few days. I can't believe how many tests they make these little cancer kids go through before they can go in for more chemo.

Jackson is scheduled to start another round of chemo very soon- and go in for his bone marrow transplant. To get ready, Jackson has to go through lots and lots of tests to make sure his little body and mind can handle what's coming up.

This week he has 8 doctor appointments in 5 days. Most of the appointments are tests and scans. He's already had an MRI of his brain and spine. An EKG and Echocardiogram of his heart- some chemo drugs can affect the heart functions. A GFR which is a kidney function test- some of the chemo is extremely harsh on his kidneys, and they want to make sure everything there is holding up okay. An Audiogram test to see if the radiation has already had an effect on his hearing (the audiologist said that he will probably see hearing loss over the next 3-5 years due to the radiation treatments that he had). And last but not least, a Lumbar Puncture or spinal tap to see if the cancer cells have spread to his central nervous system.

So far, we don't really have results from most of the tests. I have faith that all of our prayers that the bad side effects would be minimal will have helped.

Still more tests to come. Jackson has to go through a mental evaluation before he can go in for the next round of chemo. The chemo drugs that they give before bone marrow transplant are super harsh, and it sounds like it's going to be a very tough few months that lie ahead. The mental evaluation test from what I understand will last about 4 hours, and they spread it out between two days.

I have been handling things pretty well lately. Our last two months at home have been heaven on earth... literally. Our home has been so happy, and almost back to our old 'normal'. However, with the approaching hospital stay, and all of the hell that our son has to soon endure, I have been starting to have some anxiety and depression.

Just a few days ago, Jackson came to me crying. He said "I miss being cancer free". Of course I cried with him. I tried to assure him that soon enough he'll be cancer free again. I hate cancer. I still don't understand why this happened to Jackson, but I know we're somehow surviving, and one day, hopefully soon, he'll be cancer free again.

Until then, we'll do what the doctors tell us to do. We'll take the steps, and walk in faith.

Sunday, October 30, 2011

Making a Wish

Jackson is an official Wish Kid, and let me tell you, the Make-A-Wish foundation is an amazing thing.

We were welcomed to the Wishing Center like royalty.

We all got a wishing token to make a wish in the wishing pond in the back. Jackson told me that his wish was "to be cancer free." That was my wish too.

Then we went upstairs and saw all of the stars from past Wish Kids. Once Jackson's wish has been granted, he too will have a unique star that will hang for him forever. Seeing these stars was surreal. It was beautiful and exciting, but also a sad realization that so many kids have had to go through so many tough experiences to have earned the title of "Wish Kid".

After a meeting, Jackson decided on his wish, and he took his special key and went to unlock to door into the Wishing Tower.

Jackson declared his official wish and two back up wishes and they placed his wishes into a golden canister that would deliver his wish to the Wizard.

Once we got into the room we all got to read our special wishes for Jackson. It was a very humbling experience, many tears were shed during that point.

After we were done with our turn, it was Jackson's turn to make his wish. He followed the lights on the floor with the canister in his hands and found the top of the Wizards hat behind the water fountain. He placed the canister in the cone that turned out to be the top of the Wizards hat and continued to follow the lights on the floor. The lights led him to the bottom of the Wizards hat, and once he placed the top of the hat on the bottom of the hat, the room changed colors, and music started to play. It was magical.

We finished off the night with a ton of pictures, and root beer floats (Jackson's favorite!). Then on the way home Jackson fell asleep in the car.

Apparently for Jackson, making a wish was a exhausting.

I just realized that in this entire post I never mentioned what Jackson's wish was! His wishes were:
  1. A Go Kart with a race track in our back yard.
  2. A fancy playhouse with a big slide.
  3. A game room.
Now we wait to see if the doctor approves his wish, and if the Wizard can grant his wish. The entire process takes a little while, and they want to wait until Jackson is healthy enough to enjoy his wish, so at this point, we think his wish may be granted sometime in the Spring. At that time, Jackson gets to have his "star raising party", where he will add his star to those already hanging in the entry way of the Wishing Place.

Tuesday, October 18, 2011

Last Day of Radiation

Today was the last day of radiation therapy for Jackson. 28 treatments complete. I can't believe how fast it seemed to go by.

Today marks the half way point in Jackson's treatment protocol. Three steps down and three to go.
  • Chemo- Round 1
  • Chemo- Round 2
  • Radiation
--------Here we are!----------------

  • Autologous Bone Marrow Transplant- Round 1
  • Autologous Bone Marrow Transplant- Round 2
  • Autologous Bone Marrow Transplant- Round 3
  • then...Hopefully Cancer Free!

At the cancer centers they have bells hanging on the wall. When treatment is complete, the patient gets to ring the bell. Every time I have seen someone ring the bell at Primary Children's I cry. Every. Single. Time. That bell is the sound of victory to me.

Jackson got to ring the bell today at radiation. And of course, I cried.

I couldn't contain my tears. It wasn't that ugly type of cry that I have done so often, but more of a slow leaking tear sort of cry. You know, the kind where you have to keep sniffling, and tears come quickly like a drippy faucet? Yep, that kind of cry.

I had so many emotions today as Jackson rang that bell. I was proud of Jackson, proud that he did it, and proud that he could do it with out sedation. I was proud that not one time did he ever complain. I had happy emotions, and sad emotions. I am sure going to miss those people at radiation. They really were amazing. They were kind to my kids- and anytime someone loves my kids, I can't help but love that person. They made radiation fun for Jackson, and they would race with him around the office. They brought prizes for Jackson, and cheered for him all along the way. We really felt like radiation was home, and now we are leaving some of our friends- and that made me sad today.

Some of my tears came from joy, and some from fear. We are half way through Jackson's protocol, and I keep wondering how it's going. Will he really be "cancer free" at the end of this road? I also have fear of the unknown... we still don't know what lies ahead of us in the next several months. We don't know how he will react to the new chemo drugs- there are still many hurdles to conquer.

As we walked out to the car today, I was still crying. I gave Brian a hug, and he too was teary eyed. He whispered to me that "we're making it through this". I can't believe how hard this has all been. Cancer is something I never wanted to deal with, especially for one of my children, but we are making it through, and I am learning so much about patience and the Lord's timing.

Thursday, October 13, 2011

Conversation with Jack

Yesterday while we were driving to radiation Jackson asked me this question out of the blue:

"Mom, do you know what's great about having cancer?"

Wow. Hearing that question hit me pretty hard. What in the world could he possibly think was "great" about having cancer?"

His reply surprised me.

"We never would have met all of these amazing people if I never had cancer."

He teaches me something new every day- and he's right.

Sunday, October 9, 2011

Bandage Changes

I know I haven't been that great at posting lots on the blog. I don't really have much to post about. Things are going really good. Jackson's hair is growing back, but he does have some bald patches here and there due to the radiation. I learned just on Friday that where the radiation goes into his head the hair doesn't grow. Once he's all done with radiation it should grow back just fine in all of those spots (unless the new chemo makes all of it fall out again- which I'm planning on).

I thought I'd share some random cancer tidbit with you... just in case you're starving for an update. Or if you're curious.

Jackson has a Double Lumen Broviac central line in his chest. Basically it is a permanent IV that goes from his chest right to his heart. The line although somewhat bothersome the line makes chemo and blood draws much easier.

The central line can't get wet, so when we shower Jackson we have to be very careful. We also have to flush the line with a saline solution as well as Heparin (an anti-coagulant) every night. Also once a week we have to do a bandage change and a cap change. These things are all basic maintenance to ensure that Jackson can keep the same central line through out his entire treatment protocol (9-12 months). The central line was placed in a surgery, and will have to be taken out in another surgery, and we really don't want to have to replace the line, so we do our best to keep it clean.

I thought I'd take a few pictures of the bandage change process and document it here, just in case any of you are curious.

Here are all of the supplies that we use just to do a weekly bandage and cap change.

This part is the worst... well, if you ask Jackson the entire thing is the worst. Here we are taking off the sticky bandage. Jackson cries pretty hard the entire time, but he is still so brave. He has to wear a mask to help keep everything as sterile as possible.

Another picture mid-bandage change process.

Here is a picture of Jackson's central line going right into his chest with out a bandage. His skin looks amazing, as well as where the tubes go in- luckily his skin doesn't get to affected by all of the tape/bandages/cleaners and other stuff we have to put on him.

Cleaning the site is a rigorous process. We start with 3 separate alcohol soaked cotton swabs, and clean the site very well. Even though Jackson's skin looks great, this usually causes lots of pain and tears.

After the cotton swabs, we use this cool thing that has what they call "chlora-prep" in it. I'm not really sure what exactly is in it, but I know it kills more germs. We scrub with this vigorously for 30 seconds. This usually causes more tears because of the stinging, and the scrubbing.

After the chlora-prep we put some stuff called Cavilion on his skin. The Cavilion makes the bandage stick better- this is the only part that doesn't sting or cause tears.

After the Cavilion we put a sticky tape like bandage over the site. I would have taken a picture, but Brian and I usually have to use team work to get the tube positioned correctly and the tape stretched tight enough for a good fit. Brian places the bandage, and I situate the lines so that they are in a good position.

After the bandage change, we start on the cap change process. We have to change the blue part of the line, and this is usually my job.

It consists of using about 4 gauze pads as well as about 8 alcohol wipes. I like doing it, it makes me feel like a real nurse... sort of.

Here is Jackson with his new bandage and new caps.

We do this once a week, and the entire process takes about half an hour. It is a very stressful half an hour, and we are all glad when it's over.

Tuesday, October 4, 2011

I try to forget

I try to forget that Jackson has cancer.

Forgetting doesn't happen, but I try to pretend that he doesn't have cancer. Sometimes it's easier than other times- especially right now during the "radiation" stage of his protocol. We are living at home, Jackson goes to kindergarten, and has play dates. He rides his bike, he jumps and laughs and is a kid. We are doing normal things, and I feel so grateful.

Life is good right now. Jackson's blood counts are up and he feels good. Other than the tumor and the cancer, he is "healthy". Radiation has had no ill side effects that we have noticed yet. He doesn't have burns, or headaches, or loss of appetite, or fatigue like we thought he would. He is doing amazing. And Dr. Thomson said at this point the tumor should be 33-50% smaller.

Saturday we went for a ride in the car to see the fall leaves. We were trying to decide between two different drives to take and Jackson voted for the one where we could go for a walk AND see the leaves. So we drove Guardsman Pass up Big Cottonwood Canyon and walked around Silver Lake.

Jackson loved exploring, and hiking. He has so much energy and climbed every rock we came upon. He stepped into his role as big brother with ease and was quick to protect and guide Hailey along the path and away from danger.

I try to forget that Jackson has cancer, but it is constantly on my mind. I look at pictures of him when he was little, and I start to cry...I think of our lives now in terms of "before cancer" and now "after cancer". I look at his tiny face when he was younger, and I am overwhelmed with a desire to go back to simpler times. Times when he was innocent, happy, healthy, and cancer free.

I keep telling myself that one day he will be cancer free again.