Exhausted

Yesterday morning (friday) we brought JP up to primary children's hospital at 8:30 am for a check up. He had not eaten much on Wednesday - a graham cracker for breakfast and a small bowl of cereal for dinner - and he went to bed Wednesday night at 9 pm. Thursday morning we needed to take uncle Matt to the airport and I had a hard time waking him up to go. He did not want to eat or go potty or get dressed. I got the kids in the car and we stopped by Josh's work on our way. I mentioned that JP wasn't acting like he felt well and josh looked over at him and said, "wow - he looks like crap!" I told him I was pretty sure we would end up at the hospital but at that point we did not have a fever or any other real symptom to go off of. As I drove to the airport, JP fell asleep. On our drive home, he started screaming about his tummy hurting. I sat in the front seat and cried the whole way home. It's heartbreaking to not be able to hold your child when you know they don't feel well. I drove as fast as I could get away with and once we were home he was crying about his tummy hurting still and I asked if he needed to poop. I got him on the potty and he sobbed, begging me to just hold him. He only peed and asked if he could snuggle in my bed. I put him in my bed and that's where he stayed until 3 pm. 

Ever since JP was diagnosed, he has not taken naps. He absolutely refuses. If he dozes off in the car and I ask if he had a good rest, his response is always "I wasn't resting!" He is so funny about it. He never wants us to think he naps. That being said, sleeping from 9 pm Wed night to 3 pm Thursday was very strange. I called clinic Thursday morning and by he time they called back he had slept for almost 18 hours! Freaky. They made us an appt for Friday morning and JP stayed awake until about 9 pm Thursday night before crashing again. 

Friday morning we got to clinic about 8:45 (Megan Standard Time haha) and they did a CBC and chemistry draw to see how he was. They immediately started fluids and decided we would do an X-ray of his tummy. We could tell he was a little bit constipated, but even if that explained the tummy pain it sure didn't explain the exhaustion. They drew more labs and sent us for an ultrasound. We looked mostly at his gallbladder thinking maybe he had gallstones but the only thing the radiologist saw was a little sludge, but she said with him not eating for a couple days that did not seem out of place. We drew more labs and they administered IV fluids with some glucose in hopes of him perking up. During all of this he would wake up, pay attention for a minute, maybe play with some toys for a few minutes and then fall back asleep. He napped in my arms, in Josh's arms, sitting alone in a chair, basically wherever he was he fell asleep. Very strange. All his labs were coming back in the normal ranges so try decided to run a CT scan since that's basically the only thing we hadn't checked. They also ordered up some glucose to infuse. They figured if we got the glucose in him and his levels were normal and he didn't wake up, they would admit him. It could have easily explained the exhaustion if his blood sugar levels were low, which they were. He started the day at 50, after the glucose IV fluids he was at 60 and after the glucose infusion he was 168. Anything above 60 is in the normal range so he seemed fine in the blood sugar level, yet he was still sound asleep. The phlebotomist even poked his finger to test his blood sugar and he didn't even stir. They decided it was time to admit and we did. Of course as soon as we canceled his star raising party at make a wish he woke right up and entertained everyone. Lol! He stayed awake for 4 hours before crashing again at 10 pm. That meant since Wednesday night when he went to bed, he had been asleep for about 36 of the last 48 hours. That's crazy. 

At midnight friday night he fevered to 38.4 Celsius which is 101.something. Not good. That means there is an infection somewhere that his body is trying to fight. They gave him some Tylenol and checked back in a half hour and it was down to 37.3 which is much better. In the meantime, his heart rate jumped into the 140's sending me into a panic attack as I was just starting to drift off to sleep. Turns out he was angry at one of the monitors they have on him and it wasn't a real jump in heart rate, just a situational jump. That is good. And now it's almost 2 am and I can't sleep. I jump at every little noise he makes. It didn't help that I heard the life flight helicopter land on the roof either, reminding me just how blessed we are that he is healthy enough that we came in on our own time not by emergency methods. He may have cancer but it could be worse. Tonight I am snuggling in his hospital bed trying to get a little sleep while praying he wakes up in the morning alert and not drowsy anymore. Here's to a better day tomorrow!

Holland

Last weekend was General Conference (if you are not LDS you can learn more about our beliefs here) and President Uchtdorf gave a talk about darkness and how it simply can not exist in the presence of light. He said, "There may be some among you who feel darkness encroaching upon you. You may feel burdened by worry, fear, or doubt. To you and to all of us, I repeat a wonderful and certain truth: God’s light is real. It is available to all! It gives life to all things. It has the power to soften the sting of the deepest wound. It can be a healing balm for the loneliness and sickness of our souls. In the furrows of despair, it can plant the seeds of a brighter hope. It can enlighten the deepest valleys of sorrow. It can illuminate the path before us and lead us through the darkest night into the promise of a new dawn. This is “the Spirit of Jesus Christ,” which gives “light to every man that cometh into the world.”

I felt like he was talking to me. I worry. A lot. They say if the cancer is going to come back JP would start showing the same symptoms he originally had. That's kind of hard for us to go by since he really didn't have many symptoms except for little to no appetite. Unfortunately for us, he is a ridiculously picky eater so I'm always worried that maybe it's coming back. We put him on an appetite stimulant so at least now he's interested in eating but he's still very picky. I'm terrified that on one of these blood draws we are going to have bad news. I don't think that's me being pessimistic, I think it's the reality of being a cancer mom. The fear is so real. It's hard to make cancer friends and then say goodbye. I'm afraid that will never change. A cancer friend was laid to rest this morning and another cancer friend found out his tumor is growing and there aren't a lot of options left. I am trying to remember what President Uchtdorf said and, instead of waiting for someone to come along and flip on the light switch for me, I really am trying to focus more on the blessings we have been given during this time and the miracles we have been privy to. Deep breaths, it will be ok, the Lord is on our side.

Today I came across this little story. It is an excerpt from Running with Angels.

"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:  The Coliseum.  The Michelangelo David.  The gondolas in Venice.  You learn some handy phrases in Italian.  It's all very exciting.


After 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 in and says, Welcome to Holland. Holland?!?! you say.  What do you mean Holland??  I signed up for Italy!  I'm suppose to be in Italy.  All my life I've dreamed of going to Italy. But there's been a change in the flight plan.  They've landed in Holland and there 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 guide books.  And you must learn a whole new language.  And you must meet a whole new group of people you would never have 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.... and you begin to notice that Holland has windmills and Holland has tulips.  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 will never, ever,ever go away because the loss of that dream is a very 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."

I think this is very fitting. Except for having a baby, I like to think of this as my plan for life. In our "life plan" we were supposed to have 4 beautiful, healthy children (maybe just 3 if you ask Josh) that we were going to teach how to walk and talk, how to sing and dance, build science projects with, take on camping trips, vacations to Disneyland and watch them grow into perfectly healthy adults with a love for their Savior and determination and skills that would change the world. The thing is that Holland is our new normal and our new "life plan" now includes cancer. I will always live with the fear of relapse. I might also always have a heart attack if the thermometer ever reads 101.0. But we can still have all those other things too. Life is just as beautiful as I imagined it would be, I just didn't realize we'd take a few detours along the way. I am jealous that everyone else doesn't have to sanitize all the surfaces they come in contact with and that most everyone does not see a world full of germs wherever they go. It's not easy, but the Lord knew we could do it and we know we can if we look towards Him. We pray we will be able to empathize with those we have come to know in our group of cancer friends and help bless the lives of others along the way. There will be some sorrow along the way but that's the way it goes. 

Hello From Orlando!

I know it's been a terribly long time since my last post. JP is doing well and the truth is that I feel guilty about how well he is doing. We have had a lot of sadness surrounding us in our cancer-friend world and our normal world and I didn't feel like posting because I don't want it to come across as look-how-well-we're-doing-vs-what-you're-going-through. I realize that nobody would think this, and this blog is for updates on JP and how his treatment is going and I should be documenting. I've mentioned it before, but I really do feel something along the lines of survivor's guilt - even though we are far from being survivors - and it's hard for me to feel like writing when I am watching my son fight his cancer with minimal complications when so many are facing much more difficult battles. It's a double edged sword, feeling tremendously blessed for how well things are going and also feeling tremendous sorrow for our friends who are struggling in whatever their trials may be. It is what it is, and I can not let that keep me from posting anymore.

We are currently in Orlando, Florida. We flew in this afternoon for JP's Make A Wish trip. He is so excited! We are staying at Give Kids the World Village and this place is amazing. We were greeted at the airport by a volunteer holding a sign and I literally could not hold in the tears. While I would prefer that JP did not have cancer, this really is a once-in-a-lifetime opportunity that money could never buy. We feel very fortunate that JP is feeling so well and we are able to take this trip and make some incredible memories. There are so many activities here at the village (in addition to all the parks or attractions) that it is going to be impossible to do it all. We will be here through March 18th then we will stay in a different condo for a few more days before flying home on March 21st. Nine more days in this beautiful, humid weather. We are loving it! The plan is to hit the Magic Kingdom tomorrow and we will decide what else from there.