A Fabulous Delay

I can't believe I have not written in so long. I've been so exhausted (first from stress...then from fun) that I found myself conking out on the couch every night before I got a chance to sit down at the computer. I'm starting to feel some anxiety from the build up of thoughts in my head that need to be written down. So, here's what we've been up to.

I took Nate to the clinic last Tuesday for a count check, hoping to start chemo. His ANC was not high enough, but everything else looked great so we were told to come back Thursday to try again. While I was happy for an extra couple days at home, the whole situation caused a major build up of stress for a number of reasons. The number one worry I had was that Nate may not be able to get his surgery done in New York. The further chemo gets pushed back, the closer the surgery gets to Thanksgiving and we know the surgeon isn't available around Thanksgiving. Chris and I feel very strongly about getting this surgery done in New York and would be devastated if there was a conflict. My second worry was Halloween. I just wanted Nate to be home, even if he wasn't feeling well, so that I could at least be there to take Wes trick or treating. Starting chemo on Thursday would mean Nate would be coming home late on Halloween or the next day...maybe this seems silly, but it was stressful for me. Then I remembered that I had volunteered for Wes's fall party at school on Thursday (thinking Nate would already be admitted and my mom could sit with him at the hospital for a couple hours) and now had to figure out who could take Nate to the clinic for a chemo admission appointment which is not a simple appointment. Not to mention that delaying chemo and the surgery now puts round 6 of chemo right at Christmas and we are trying to be hopeful that Nate will be home and feeling good for Christmas. I was basically a giant stress ball but decided to take our free day by the horns.

Nate and I went to pick Ellie up from Liz's and Nate got a rare (these days) chance to play with his cousins. I also made a quick call to the kid's pediatrician. They still needed flu shots and Ellie was due for her one year check up...she CAN NOT get behind on her immunizations with a brother with cancer in the house. Usually, the office requires you to make "well visits" weeks ahead of time but were nice enough to squeeze us in. I called my mom in for back up (thank God), got Wes out of school early and lugged all three kids to the doctor. Ellie is a big healthy girl as predicted and everyone was super brave for their shots. Wes really didn't want to get a shot but when I reminded him how brave Nate has to be EVERY day...he didn't even blink an eye. As I was putting Ellie's diaper back on after her weight check, I noticed some spots that were forming blisters on her legs! We had also learned a couple days earlier that Jaime's sister had been diagnosed with chicken pox. Ellie hadn't had any contact with her, but Johnny had...and Ellie had contact with Johnny. It was a long shot but when a brother with cancer is involved, you have to be sure. I then had to hold down my poor screaming, kicking baby girl while they tried to take her blood for a chicken pox test...they never did get the blood. I did remember that she had been playing in the grass the day before and I had to rescue her out of an ant hill....we prayed for ant bites. Can you see why I was a little stressed?

Wednesday I worked and Nate was super excited to go to the babysitter. Funny how the little "normal" things we took for granted can now make us so incredibly happy. We made a plan for Thursday that included Daddy and Grandma taking Nate for his chemo admission appointment and I took Ellie to Tracy's so I could help at Wes's school party then head to the hospital. I was sitting in Tracy's driveway ready to drop Ellie off when I got the text from Chris that Nate's counts still were not high enough and we'd have to come back on Monday...Halloween. I kind of lost it. All the worries of Nate's surgery and the upcoming holidays and trying to make them as normal as possible for my family came flooding in. Once again, what would I do without Tracy. She hugged me, listened to and understood my fears and reassured me without preaching. I really feel like I left the weight of the world I'd been carrying around, on her driveway and left ready to tackle a "free" weekend. I also told Chris that we would not be going to check counts at the clinic on Monday...they could see us Tuesday. They were fine with that. I was off to Wes's school party with the good news that Nater was going to be HOME for Halloween!

Boy, I guess Nate's bone marrow knows what we need more than we do. We all really needed the fun weekend we had. We all needed a break...desperately...after rounds 3 and 4...so did Nate's bone marrow apparently. So, we got the break we so desperately needed. We did our normal Thursday mall lunch with Grandma, complete with a carousel ride. Wes had Friday off of school, so we went to the aquarium and Nate ate his way through Arizona Mills. We took the kids out to dinner and a movie Friday night. Saturday, while Daddy worked, we gathered last minute details for our family Halloween costume then met Daddy for lunch. Everyone got a good nap and got ready for a fun night at Grandma and Linde's house while Chris and I went on a date for an early anniversary celebration. Sunday we got up bright and early and headed to Tolmachoff Farms with my friend Jen and her family for some corn maze and pumpkin fun. We grabbed some lunch, went home for naps and then Jen and family and Grandma and Linde came over for pumpkin carving. Each kid got their own jack-o-lantern and Nate insisted on a Super Nate pumpkin. Monday, while Wes was in school, we met friends at the park for lunch and playing. When Wes got home from school we all got our costumes on and went to my store to grab a couple groceries and show off our costumes. We got home in time to eat a quick dinner before Daddy got home to man the fort while I took the kids out trick or treating around the neighborhood. After an hour or so, we headed over to Grandma's house for some fun with cousins until everyone started to melt down from too much candy and too little sleep. Whew! Now, that's what I call a fun filled, make the most of every moment, weekend!

I can't even tell you how much we all needed this weekend. Personally, I feel ready to tackle this cancer again...I was just so weary. Nate really made the most of his time home. He is a total fire ball! He had SO MUCH freaking fun, it was insane! I love that fiery little boy so much and I hate when the chemo makes him go in to hiding. All day Monday he insisted I call him Charlie Brown and he called Chris and I, Linus and Lucy. He's 2!! How funny is that?! After our first couple trick or treating houses, Chris asked if he was done and he said, "No! I need to fill it [his pumpkin bucket] to the top!". He just really "got it" this year and had so much fun. I am so grateful that he wasn't sick in a hospital bed. Nate also used his time home to eat us out of house and home and put all his weight back on. I'm telling you, we don't call him Super Nate for nothing!

Tuesday morning (yesterday) we were at the clinic bright and early for his count check. We expected him to make his counts...and he did. So, he got checked in and started round 5 late last night. So far, he is doing pretty well. He did throw up this morning at 5am, right before his next dose of anti-nausea medication was due. Chris and I made a plan to make sure Nate is getting some sort of anti-nausea medication every 3 hours with another medication to be used if he still throws up. We are just trying to stay on top of it. The more food he keeps down, the better off he is. So far, so good. He hasn't thrown up again and has been eating well all day.

We also now have a new plan for New York. We have a consultation appointment scheduled for November 30th and surgery December 5th. As we well know, things can always change but these dates will probably stick. This also gives Nate's body some good time to recover from this round of chemo before surgery. I will start making some travel plans tomorrow.

Unfortunately, the timing of all this, seriously puts our hope to not spend Christmas in the hospital in jeopardy. The one thing I know though, is that we have very little control over this. We will take control over what we can and give the rest to God. Fair warning...I don't want any pep talks if we have to spend Nate's birthday or Christmas in the hospital. I don't want to hear, "It's ok...you can celebrate another day" or "It's just one birthday/Christmas". I know all these things and if it comes down to it, you can be damn sure that I will make the best of it and make it as special as possible for my kids. But, starting sometime this month (when RSV season starts), Wes and Ellie will no longer be allowed at the hospital (because children are germ factories). So if Nate is in the hospital, our family will be separated. We will make the best of it, but we will not be together on Christmas Day...the first real Christmas that Nate "gets it". We will figure it out, because we have no choice, but if you try and give me a pep talk about how it's not that big of a deal, I am thinking in my head (on a good day), "Then why don't we trade. I will be at home with my healthy, happy family and you can sit in the hospital with your son who has cancer.". On a bad day, I might just scream this in your face and run away crying. None of us want that...so you've been warned.

When I took Nate to the grocery store in his Charlie Brown costume, three people thought that I had shaved his head for Halloween! This is why we must raise awareness for childhood cancer. The fact that someone (3 someones) would think that it was more likely that I would shave my 2 year old's head bald (and this is no buzz cut...he is B-A-L-D) for a Halloween costume than it is likely that he has CANCER, is totally ridiculous. These people did not automatically think cancer because childhood cancer doesn't come into their neighborhood...it doesn't dare enter their grocery store. Childhood cancer stays on the TV in those sad St. Jude commercials. It stays far away, in the hospital where it can't touch their family...except when it comes crashing into your family like a Mack truck. I felt a little bad "ruining" these people's day when I told them that "No, I did not shave my son's head...he has cancer". They got a scared look on their face, mumbled "I'm sorry", and walked away quickly...all 3 of them. I could have just let it slide, but I didn't. They need to know the truth. Childhood cancer does come into their grocery store. Hopefully they went home and thought about Nate for just a minute. Hugged their family a little tighter. Maybe they will donate some money this year to childhood cancer research. Maybe they will turn off the effing Kardashians and go volunteer at the Children's hospital. Maybe not...but I'm going to keep telling people and I know Nate and his beautiful bald head will make a difference to someone.