I Wish Tomorrow Wouldn't Come

Snuggled up watching movies.

I feel like I've almost been blissfully unaware for almost the last month that my baby boy has cancer.  Sure, he has a shining bald head and a tube hanging out of the middle of his chest, we spend most of our days at the clinic, there's medicine and shots to give, lines to flush and dressings to change, and I suddenly can visualize the germs on everything...but, we've been home.  We've been together as a family of five, eaten dinner together and snuggled into our own beds at night.  Nate has been feeling great!  He's sneaky and mischievous and almost too much for me to handle...and I love it!  Really?! How can this kid have cancer?!  Chris and I even discussed wanting to see the tumor.  It's so hard to believe that there was a killer growing inside of him.  The only thing that has been making him not feel well is the poison we are putting in him to kill the killer...so strange.

So...my bliss is being put on hold starting tomorrow.  I know we'll get back to it...hopefully sooner, rather than later...but it sucks.  I feel like I'm living a life in two different worlds.  One foot is in the "regular" world, where nothing on the outside has changed much.  The other is in the "cancer" world, where all of our lives are changed forever.  Sometimes I get a sick feeling in my stomach and have to think for a second about where this feeling of dread is coming from...oh yeah...Nate has cancer...and it's hitting us in the face again tomorrow.

We get to the clinic at 7:30am for a quick blood draw, then head over to the hospital.  Nate will be put under anesthesia for a bone marrow biopsy, scheduled for 9:30am, then he will be moved to radiology and handed over to another anesthesiologist and given a CT scan and MIBG scan.  He will probably be under for a couple hours.  Then, he will wake up and we will check him into the hospital to start chemo round 3.  He will be in the hospital for at least 5 days getting the chemotherapy.  This round is totally different drugs than he had the first 2 rounds, so we won't know how he'll handle them until we're in the middle of it. I'm cautiously optimistic that he will handle them fine.  It also helps that Chris and I have learned a bit about what makes him throw up and how to prevent it the best we can.

We need lots and lots of prayers tomorrow.  We know that Super Nate has been handling his treatments like a champ, but until we see the scan results we just don't know what's going on inside of his little body.  Handing my baby over to be put under anesthesia...and then having to wait for the scan results, is almost more than I can handle.  I feel like my insides are going to explode in anticipation.  I've heard it called scanxiety...I call it hell.  My mom is coming to sit with me while we wait...she's going to make sure I don't actually explode.  Please pray that the procedures go smoothly and the scans show a reduction (or maybe even disappearance) in the 2 spots that showed up in his last scans.  This poison better be doing it's job!

Gearing Up

 

 It's been so nice being "normal". This has been the longest stretch that we've been home since all this started and I've LOVED it. You never know how much you appreciate simple things like shopping trips to Target and Costco, going to the movies, lunch at the mall, going to church, having friends over...until your child is constantly in the hospital or their immune system is too weak to leave the house. I'll still take "stuck at the house" over "in the hospital" any day, but it's been so nice to have Nate's immune system strong this past week. We've taken advantage of it and done all of the above, and more.

The plan this week was as follows:

Wednesday (Chris took the day off work) : MIBG injection (the radioactive element they use to look for neuroblastoma), CT scan

Thursday : anesthesia for MIBG scan (the scan was scheduled for 12pm which meant that Nate couldn't eat breakfast or lunch...and Nate LOVES to eat)

Friday : anesthesia for bone marrow biopsy then check in to the hospital to start chemo

We had everything all planned, where we were all supposed to be at what times and who was taking care of the kids. Then I got a call right as I was about to leave for work this morning. The MIBG injection was not available today (I guess they have to get it from Canada and their shipment didn't get here), so everything had to change. Listen Cancer...I know you don't want me to plan anything...but, I have to make sure my kids are taken care of. So, I have to plan a little bit.

As of right now, we still don't have a concrete plan. Nate is due at PCH tomorrow afternoon (Thursday) for the MIBG injection and I plan on talking them into doing the CT scan. No one could give me a definite answer as to if he could get that done tomorrow, but I'd like to get as much out of the way as possible. Friday he needs to get the MIBG scan and bone marrow biopsy both done under anesthesia, but I have not yet been given a time. I'm hoping it will be early in the morning so that I don't have to starve him too long. Then, he will check in for chemo round 3. I'm also hoping the scan and biopsy will get done early so he can get started as early as possible on the chemo. The earlier in the day he starts, the sooner he can go home, 5 days later.

It's just so frustrating! I realize that Cancer now trumps all, in our life, but we do have jobs and other children to take care of. The hospital could help us out a bit. Chris took the day off from work, for no reason, and we're trying to save as many of his days off as possible for when we have to go to New York. The most frustrating thing, though, is that apparently the radiology schedulers and the bone marrow biopsy schedulers can not talk to each other! I've been asking (anyone who would listen) from the beginning if Nate could do everything under one anesthesia. I was told, after going back and forth for a week, that it couldn't get worked out and it would have to be on two different days. Somehow now, he'll only be getting one anesthesia. That's great, but why couldn't it have been scheduled that way from the beginning?!? He's going to have to get a bunch more of these scans and biopsies done through this process. I guess I better figure out how to navigate their scheduling.

Wake Up To Childhood Cancer

Hope

I can't wait until the day we can share Nate's story of hope.

http://www.azcentral.com/arizonarepublic/local/articles/2011/05/22/20110522perry-high-school-montini.html

Time

Seeing movies in the theater is one of our favorite family activities. Nate went to his first movie at 1 week old. Last summer, when Nate was 18 months old, we went to the Harkins summer kids movies every Friday morning and he would start squealing and clapping as soon as we pulled into the parking lot. This summer, Nate only got to go to the first 2 or 3 summer kids movies because cancer took over our summer. He's been asking to go to the "vovies" since that first hospital admission and we haven't been able to make it because his immune system hasn't been good enough, at the right time.

So, I promised Nate and Wes we could go see a movie tonight in the theater. Unfortunately, I promised this before looking at the movie schedule to see that there are only 2 kids movies playing right now and the last showing at all the theaters nearby was 7pm. The problem was that Daddy didn't get home from work until close to 6:30pm. We were really cutting it close on time. Chris didnt want to rush it and thought it would be easier to just rent a movie and make a special night at home, but I had promised the boys a trip to the theater and they were begging. So, we got our stuff together quickly, I whipped up a quick dinner and we were off to meet Grandma and Linde for the movie. It wasn't the easiest thing, but we got to the theater just in time for Spy Kids.

Nate loved the movie. He kept gasping and saying, "Wow", at all the special spy effects and laughed his silly, loud laugh at all the goofy humor. He also
enjoyed the preview and has chosen Happy Feet 2 as his next movie going experience. As we were leaving he told Chris, "Spy Kids was rearry good!". I kept thinking how glad I was that we went because both boys enjoyed it so much...and so did I.

The movie was about a villain who was speeding up time. As it turned out, he was actually trying to turn back time to spend more time with his father. Jeremy Piven delivered a sort of corny but rather poignant monologue about making the most of the time you have with people because you can never get that time back. Chris told me that Nate touched his shoulder right in the middle of the monologue and his heart almost exploded. That's exactly what we did tonight...we made to most of our time together. We are not going to sit around and wait for these cancer treatments to be over to live our life. We will take advantage of any time that Nate is home, healthy and feeling good. When he is not, we will make the most of those times too.

Dr. Mom

Not sure why...but I'm the one responsible for most of Nate's difficult care. Chris is the holder and I'm the shot giver and the dressing changer. Maybe it's because I'm kind of tough (I did give birth with out epidurals, you know) and medical stuff doesn't bother me. Whatever the reason, it's a lot of responsibility. I'm the one who has to
shove the needle in my baby's arm while he wiggles and screams, I'm the one who has to keep everything sterile as we change his central line dressing.

I took Nate to the clinic this morning and it was an uneventful visit...other than him acting like a total 2 year old and running all over the clinic yelling, "No Mommy, I do it myself!". His blood work came back great. He has a great immune system for our weekend of fun ahead and he didn't need any blood or platelet transfusions. We also had the nurse change his dressing, which has to be done each week. Then we had a fun, normal day.

Tonight when putting on Nate's jammies, Chris noticed that his central line dressing had started to come off. Ugh! I've only changed his dressing 2 times before. Once under the supervison of a nurse and once before when it came off at home. Chris and I got him set up on our bed and got to work. It's a very difficult process because everything has to stay completely sterile. Nate is a very good boy and lays pretty still, but he IS two and it hurts, so it's not his favorite thing.

Well, this didn't go nearly as smoothly as the first time I had to do it. The sterile pack we used this time was slightly different and the sterile gloves were VERY hard to get on. Chris reached across me and accidentally touched one of my gloves. Shit...it's not sterile anymore...open a new pack. Then Nate touched my gloved hand. Crap...there goes another. 5 packs later, we finally did it. I started to freak a bit because we only had 2 packs left. Then what? I guess we drive him to the emergency room? I better call our nurse tomorrow and ask that question...and I better call home care for some more sterile packs.

Only in dreams...

Last night I had a dream that we discovered you could run from cancer. Oh how I wish this was true. I would sell everything we own, pack up 5 little bindle sticks and we would hit the road. We could take odd jobs and live off the land. The world would be our children's classroom. We could go to Hawaii, Alaska, Argentina, South Africa, Fiji, Australia, Greece, Italy, Ireland, Russia, Japan...anywhere...as long as cancer couldn't find us.

Then I woke up...

We can't run from cancer. So, we are here at the clinic. Standing up tall...facing cancer head on. I am screaming, "YOU CAN'T BEAT US CANCER! YOU ARE DEALING WITH SUPER NATE AND HIS SUPER FAMILY! WE ARE TOO STRONG FOR YOU!".