Round 11 NO FEVER!

Saturday March 31, 2012

We have made it through round 11 without a fever! Drew is feeling really good and we have been able to enjoy some of the beautiful spring weather we have been having.

Evening meds.

I wanted to get a picture of Drew's port accessed to document what it looks like, but it was months and months before he would even let us look at it under his shirt just to check it let alone pose with his shirt off.

Being silly.

Brooke was so proud to help push Drew's IV meds.

It was so warm it felt like summer and the kids loved playing in the water.

The kids set up their own little soccer game in the yard.

We did have to go and get blood and platelets one day. There was a dad there that was doing face painting as part of his sons last day of chemo celebration. We opted to paint an arm instead of his face since we weren't quite sure how the washing of the face would go and while being Spiderman for a day or 2 would have been cool, a month or 2 might have been a different story.

Blake and Drew were able to get together a couple of times and play.

Randy's cousin Jason was in town for the week.

And just a picture of Kelsey - 9 months.

Next round is scheduled to start on Wednesday.

Chemo Round 11

Wednesday, March 14, 2012

I spent last night at the hospital with Drew.

We came yesterday to start round 11 of chemo.

It was another long day with general anesthesia for his regularly scheduled MRI and lumbar puncture, but the day went smoothly. They got us in right on time and had him in by 11am and he was out just before 1pm. Then he slept it off until 3:30pm.

Recovering from anesthesia all wrapped up like a little cocoon.

He woke up hungry and ate 4 bowls of cereal and was in a good mood happy to play with his new Star Wars Fighter Pods.

It is really amazing how smooth things go and how quick he is to cooperate for something that he has really had his eye on. And I have learned to always have that something on hand! It is so worth it for everyone involved.

Since he slept most of the day, we were up late watching TV and playing, when it hit me that it was exactly 9 months ago that he and I were up late spending our first night in the hospital waiting for that first MRI. It was 9 months ago this morning that we found out that Drew had a brain tumor.

What a different place we are in 9 months later. His MRI yesterday looked good. But I'm not only talking about how different things are physically or health wise. We are changed people. Our perspective on life is changed. We have seen and experienced things that most people don't even know exist. We have been exposed to a world that seems to exist as its own entity behind these closed walls with so much pain, suffering, and sorrow...but also with so much joy, happiness, and laughter. Through this experience we have grown and understand completely, how truly precious life is.

I came across this story and thought it was very fitting for the life we now live:

When you’re going to have a baby, it’s like planning a fabulous vacation trip to Italy. You buy a bunch of guide books and make your wonderful plans. You plan to see the Coliseum, the Sistine Chapel, the Gondolas. You learn some handy phrases in Italian and it’s all very exciting. After several months of eager anticipation, the day finally arrives. You pack your bags and off you go.

Several hours later, the plane lands. The stewardess comes aboard and says, “Welcome to Holland!”

“Holland?” you say. “What do you mean, Holland? I signed up for Italy. I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.” But there’s been a change in the flight plan and here you've landed in Holland and Holland is where you must stay.

The important thing is that they haven’t taken you to a horrible, disgusting, filthy place full of pestilence, famine, and disease. It’s just a different place. So, you must go out and buy new guidebooks. You must learn a whole new language. You will meet a whole new group of people you would have never met. It’s just a different place. It’s slower paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around. You begin to notice that Holland has windmills. Holland has tulips. And Holland even has Rembrandts. But everyone you know is busy coming and going from Italy, and they’re all bragging about what a wonderful time they had there. And for the rest of your life you will say, “Yes, that’s where I was supposed to go. That’s what I had planned.” And the pain of that experience will never, ever go away. The loss of that dream is a very significant loss. But if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.

Life is about making the most with what you have been given and finding a way to be happy doing it!

Round 10 Fever

Sunday, March 4, 2012

Let me just give you a run down of how our last admission went. Drew woke up Thursday morning and was feeling pretty lethargic, but otherwise seemed happy. He just wanted to lay in bed and watch TV. I knew he was going to need blood, so I was hoping that that was all it was and not a fever coming on. I took his temp and it was 99, not high enough for us to have to go in, but something to keep an eye on since I knew his counts were bottoming out. Our homehealth nurse came and drew his normal scheduled labs and everything was low with an ANC of 0. I took his temp about an hour later and sure enough he was up to 101.

Off to the ER we went. It was unusual for us to be there at the ER during normal business hours and not the weekend or middle of the night. Things were moving along smoothly and fairly quickly. We went through the usual routine of labs and blood cultures, fluids and antibiotics while monitoring blood pressure. Then the registration lady came in to give Drew his ID band and then went to put mine on me. As she went to put the BLUE band on my wrist, I think my exact words were, "oh no no, we are purple" (referring to hem/onc on 4West - each floor is color coded). She proceeded to tell me that 4 was full and we were going to 7. "Oh, well what's on 7?" was my reply.

Again, let me remind you that we are in the ER because my child is severely immunocompromised and requires close monitoring for any type of infection and coverage with antibiotics and antifungals even without any known infection. But back to my question, "what's on 7?" Ready for this one? Both nurses and registration lady say, "infectious Disease." INFECTIOUS DISESE?! You're putting us on the INFECTIOUS DISEASE floor?!

As they were monitoring Drew's blood pressure to make sure it didn't drop too low, I asked if they wanted to check mine b/c I guarantee it was anything but low! After a lot of back and forth, it appeared that we really didn't have any other option and they assured us that they would get us down to 4 as soon as a bed opened up, hopefully later that night.

We made it up to 7 fine and held our breath through the hall (just kidding - kinda). We were in our own room and made sure our nurse knew that we were on high alert for any cross contamination or handling of things differently than we are used to. It's just that the nurses on that floor aren't used to handling a central line as often and aren't as familiar with administering his meds or TPN. Everything worked out fine even though they didn't get us down to 4 until the next day, but it was just added stress as I felt like I had to oversee everything.

His fever only lasted about 24 hours, so after another 24 hours being fever free, 48 hours of negative blood cultures and an ANC on the rise, we got to come home yesterday!

A little Portillo's chocolate cake would have anyone feeling better!

Ok, so he only ate the icing off the lid and I ate the rest of the cake!