Friday, November 19, 2010

Round 13 and 2 surprises

Jack finished up Round 13 of chemo on Saturday the 13th. He was in pretty good spirits the whole time and enjoyed lots of good movies, wagon rides, crafts with Mommy and drum-playing with Daddy.

{Jack got to visit with some therapy dogs the first night of chemo.}

{He kept telling this sweet dog "Don't you be lickin' me!" and "I like your twaws!" (claws).}

He did pretty well with the new drug until Friday night. He got pretty sick late that night and then again on the way home Saturday morning. That was really rough but thankfully he perked up almost instantly when we got home.

Last Thursday morning when the doctors came by they told us that they felt it would be best if we did two more rounds, instead of just one more. Boo.

{Enjoying being outside for a little bit.}

We were pretty surprised...just the day before we were told that we for sure only had one more round. But we trust our doctors. We know that they are very experienced and knowledgeable and if they think this extra round will keep cancer away FOREVER...bring it.

So the plan is that we will try to be admitted on Dec 1st for Round 14, leaving Dec 4th and then try to be admitted on Dec 22nd for Round 15, leaving Dec 25th.

Hopefully we can stick to that plan but it all depends on his counts. I would love to be DONE with chemo in 2010 and start 2011 without "chemo" written on my calendar.

Saturday night we had our Heroes for Children event at the Dallas Museum of Nature and Science. The boys had a blast.

Jack ran from dinosaur to dinosaur saying "Dinosaur, do you like me?" It was absolutely precious. Great family night.

{My boys.}

We had a pretty low key Sunday and Monday. We were looking forward to a week at home with no real plans other than me begging Ryan to get Christmas stuff down.

About 7:45 on Monday night I noticed that Jack felt warm. I took his temperature and it was 99.5.

By 8:15 it was 100.6 and I was waiting on the oncologist to call me back.

Fevers are a big deal and they don't allow us to give him tylenol or do anything else to try and break the fever.

Basically, his body is so stripped of the ability to fight anything off (chemo kills good cells along with the bad ones), so when he gets a fever--even a small one--it's his body calling for help.

Poor baby just laid in our bed while I ran around packing bags. He had been in a great mood all day but that fever just wiped him out so fast.

We made it to the hospital by 9:45 Monday night and we were attacked by three nurses.

This was our first visit due to a fever (I was going for a perfect record but 13 rounds of chemo with no fever visits is pretty good) so we had no idea what the procedures were.

We actually thought we'd get to leave after the doctors rounded on Tuesday morning. I said that to the nurse and she laughed at me. Good thing she's my favorite night nurse or I would've been upset.

It's really important to get fluids and antibiotics started asap so that is why they came at us full force.

Within 15 minutes of being there his port was accessed (not fun for anyone, especially since he didn't feel well and had fallen asleep in the car), his vitals were taken, the nurses got several vials of blood to send for various tests, a broad spectrum antibiotic was started and a chest xray was scheduled.

His temperature reached 101.7 but was under control within two hours. The chest xray machine was wheeled up to our (really, really tiny) room at about 11:15pm. It was quick and painless.

We all settled in for a short night of rest.

Tuesday morning was eventful.

The chest xray showed something on his lungs. I did not start breathing again until the nurse explained that it was fairly normal for that to happen when kids were in for fevers and that it didn't look cancer related.

A child with cancer + hearing "something on the lungs" = PANIC.

{The boys playing catch.}

So, since his xray showed "something" (best explanation is that he had a small cold or other respiratory issue) a nose swab was done. Not fun at all for a three year old!

We also started a mineral oil/grape juice cocktail to help with some tummy issues.

Also not fun.

{Pretty much sums up how Jack felt about all that.}

Another broad spectrum antibiotic was started.

We were put on strict isolation while we waited for the results of the nose swab and other cultures. That meant no visitors for Jack's sake, and none of us could leave for the sake of the other kids on the floor.

Tuesday night we were also moved to a bigger room which has been nice.

{Craft time!}

Wednesday the nose swab came back negative, which meant they couldn't really explain the fever or the chest xray. Another test is being run right now with results expected next Wednesday.

His hemoglobin was low and getting lower on Wednesday so he had to get a blood transfusion.

Thursday we were taken off of isolation, which meant we could leave the room. Jack still can't leave the room or have visitors because his counts (ANC) are just too low. The doctor's words were "I don't want to put him out in the world just yet."

{Monkey boy Brayden.}

His counts, other than his hemoglobin which shot up after the transfusion, have been dropping all week.

So, now we are just sitting and waiting for his counts to increase. And eating. Pretty sure I will need a diet plan when we get home.

All in all, it hasn't been bad. We are having lots and lots of uninterrupted family time and some really good laughs. God blessed me with a hilarious husband. The boys have been so good and so funny. I love watching them together.

{All snuggled up for stories.}

And like always, I'm reminded that our situation could always be worse, our plate could always be more full, that we have alot to be thankful for in a tough situation. Five nights (and counting) is a long time to be in the hospital, but not compared to some of the families up here.

So thankful we don't have animals at home to worry about.
So thankful I don't have a job to be at.
So thankful Ryan has a job that cares about his family.
So thankful we don't have school age children.
So thankful that Jack is in good spirits.
So thankful for chocolate thunder cake. (Don't be jealous.)

We are still fighting.

Some families are not.


Please pray his counts go up soon so we can have some time at home before Round 14.

Also, please pray that all of the cancer cells get knocked out and stay AWAY from my baby.

Give thanks in all circumstances; for this is God’s will for you in Christ Jesus.
1 Thessalonians 5:18


Wednesday, November 10, 2010

Coming to you from Room 614D

So sorry for the lack of updates.

Some days writing is easy and some days it isn't. It forces me to think about our situation. And I don't wanna. But since we are in the hospital anyway...kinda hard to avoid it.

Everything has been going pretty smoothly. No sickness from Round 12 back in October. We were able to sneak in a trip to the Zoo the day after we were discharged! His counts weren't great, but not toooo low, so we just avoided people at all costs. The nurses didn't freak when I told them what we were planning so I figured we were okay. I think they know us well enough at this point to know I had the hand sanitizer out every 5 minutes. I had been really, really wanting to take the boys since we spent the summer on lockdown and it was SO nice to be out and have a normal family day. The boys had a great time and I am so glad we were able to pull it off.

Totally loving not driving to Dallas every day for radiation!! Those 20 days will not leave my memory anytime soon. I am so thankful that is behind us. Extreme situations make you look at things differently and the whole process really made me appreciate our normal days...even if the normal is a new one.

I had a conversation with our radiation nurse that truly depressed me. One day when we were waiting for Jack to wake up from sedation, we started talking about how often they have children in the clinic for radiation. Childhood cancer is very rare and not all children with cancer require radiation (although when it comes down to it, I'm thankful we did it. Studies show that radiation after tumor resection equals less of a chance of recurrence.) and not all children that do require radiation require sedation--if they are old enough to understand that they need to be still, they don't have to be sedated. So, when she and I were talking, she was explaining the rarity of it all. Something about knowing that not many people were going through what we were going through at that same time was just defeating. And made my heart heavy. Not sure why. I would wonder as we drove into Dallas each day if anyone else was doing the same thing we were...and the answer is probably not. Oh well. Just gotta take it for what it's worth and move on.

His leg is healing well from radiation. It got bad for a few days towards the end. He was in a lot of pain when I bathed him or put cream on his leg. We got some new cream from clinic last week (stuff they use for burn victims) and it has helped a ton. He still experiences bone pain from time to time and that can be heartbreaking because he gets so distraught.

We checked in this morning for Round 13. Jack has been having a rough time with his port accesses lately, but thankfully this morning it wasn't too bad. A Push Pop and Spiderman made it all easier to handle.

He gained a little bit of weight which is awesome. His counts BARELY made the cut for chemo. It's crazy how compromised his immune system is and how long it takes for his counts to recover. He even got a shot after chemo last time to help his counts go back up...and we still just barely made the required number. They are typically at their peak right after chemo, and then they plummet. Lately it is just taking so much longer for them to recover.

We are so thankful he has not been sick throughout this process. We cherish our time at home and we are so glad that he has not had to be admitted inbetween rounds for a fever or infection.

This is our second-to-last round of chemo. He will be getting a new drug today and next time.

I am nervous about the new one.

It's the only drug (out of the five different ones he has had) that the doctors talked about really in depth. They don't always go into a ton of details, especially about side effects, because really? Do we want to know? Will it change our decision to continue with treatment? No.

So, they typically give the main points, hand over some literature and that's it. Of course they answer any and all questions that we have, always.

I could be looking into this too much, but the fact that they took the time to really explain the side effects of this one just makes me a little queasy.

But since the nickname for this drug is "Red Devil" (from Google, not the Doctors) (Yes I know I shouldn't be Googling) I think not.

However, I will focus on the good that the drug can and will do. I will pray that it is hard on the bad cells and gentle on the good ones. And that's really all I can do.

Right now, he is getting fluids and we are waiting on the chemo to arrive from the pharmacy. Pre-meds are at 4:30 and the first drug should be up and running by 5:00 and will be done by 8:00. The second drug--the new one--will go up at 8:00 and run until 6:00am.

We will repeat the same routine tomorrow night and Friday night. Hopefully we will be discharged Saturday morning. We were invited to a really cool event at the Dallas Museum of Nature and Science that is Saturday night. It is an event for cancer families put on by Heroes for Children. Jack is SO pumped! I found him a really cute dino shirt to wear (and one for Brayden of course). I'm so very thankful that it fell right after chemo before his counts drop to the 100's again!

My sweet blog friend Michelle's daughter got a clear scan this week (praise God!) and she mentioned in her post about how many times her sweet baby has had to be sedated (once is too much!!) and it got me trying to count all the times Jack has been sedated. Thirty. 3-0. Maybe more. I got tired of counting scans.

went to Heaven this past weekend. Please, please say a prayer for his family. I imagine that their hearts are hurting so very badly right now, and will always.

Gosh I hate cancer.



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