Happy New Year!

Merry Christmas 2013!

We have had another busy year filled with ups and downs (thankfully more ups than downs this time!) and started it off planning and packing for JP’s Make-A-Wish trip to visit Mickey Mouse in Orlando, FL. We spent 10 days on the best vacation of our lives visiting three of the four Disney parks, SeaWorld, Universal Studios, Legoland and even caught a Braves Spring Training game. It was amazing – we were given a spacious twin home at Give Kids The World Village, didn’t have to cook or clean, got to order room service any time and eat ice cream for breakfast, played arcade games, air hockey and mini-golf, went on a train ride, fishing and swimming and that was all just at the Village! At the theme parks we never had to wait in line for a ride or a character. It was so much fun – completely stress-free and just the kind of breather we needed.

Ironically enough, visiting the Disney parks was the least exciting thing we did. We fed dolphins, sharks, stingrays and sea lions at SeaWorld, had rides all to ourselves at LegoLand and Universal Studios really made JP feel special. As soon as Captain America saw him, he knelt down to his level, saw his name badge and said, “Hi JP! You know what? You’re MY hero!” Then a worker asked us to wait for a few minutes. They opened a door to their backstage and brought us back to meet all of their characters privately. Flexing his muscles to superheroes who were ooing and ahhing, JP could not have been happier.

At the Braves game we were given front row seats behind home plate and JP received autographed balls from Tim Hudson and Jason Heyward. We beat the Phillies, which made it that much better. At the end of the game he went down to the field where he ran around the bases while the crowd stood and cheered. It was incredible! We can never recreate a vacation like we had and although we wish we never qualified for such an amazing gift, we will never forget the generosity of the Make-A-Wish program and hope to pay that forward someday.

Elsie is almost 2 years old already and such a little princess. She likes getting her make-up on, dressing up in princess attire and wearing mommy’s high heels. She is all girl! She is such a sweetheart that anytime someone coughs or sneezes you’ll hear her say, “Bless you!” and until you thank her for blessing you she will keep saying it. She started getting hives this fall and so far we think she’s allergic to dairy. She just wanted a little bit of that spotlight we’ve had on JP ;) She has all of us wrapped around her little finger.

JP is a busy 4 year old who keeps us on our toes. He is too smart already! He follows and understands sports, much to Josh’s delight. He can tell you what kind of play they are doing, what down it is, which team he wants to win (he knows every team in most sports – college AND professional) and we constantly have sports games filling up our DVR because he knows how to record them and insists on watching each game over and over throughout the week. The Utes mascot, Swoop, is still one of his most favorite people and we just adore our little man so much. As far as his cancer goes, we do oral chemo (pills) at home each day, a concoction of many other meds throughout each week, blood work at the hospital every 4 weeks and IV and spinal tap chemo every 12 weeks. Other than a couple ER visits for fevers, his treatment has been much less difficult and we are trying to find a sense of normalcy again. He will continue receiving chemo until May 2015 so we are just over halfway.

Megan still works for JetBlue and still tries to work as little as possible. She ran Ragnar on a team called “If my kid can fight cancer, I can run Ragnar!” in June. Ragnar is a 200 mile relay race divided up between 12 team members. It took them about 36 hours to run from Logan, Utah to Park City, Utah and Megan ran 12.5 miles in total. She is not a runner (hasn’t gone for a run since!) and taking on this challenge was very difficult and therapeutic at the same time. She left a lot of built up sadness and anger out on the road and even though it was hard, it was nothing compared to what these kids go through. The team plans to run again next year and Megan or Josh will run 14 miles this time. Yikes!

Josh has been busy with his honey-do list. We closed on our new home in Layton, Utah, at the end of May and then spent the summer remodeling. Since he is so handy, Megan talked him into redoing everything. Only some built in bookshelves and the stair railing is the same as when we bought it. Josh has been hard at work tearing down walls, putting up new ones, painting, tiling, plumbing, you name it. We were so excited to move in at the end of August! Josh is a perfectionist and our home is wonderful. He is still working for the IRS and was recently called to serve in the Young Men’s Presidency.

We had to say goodbye to our dog Ralphie in July. We got him when he was just 9 weeks old and were always outsmarted by him. He never really grew out of that puppy phase, either. If you’ve seen the movie Marley and Me, well, that should have been titled Ralphie and Me. He would take us for walks instead of the other way around and was always our little Houdini escape artist. Unfortunately, one night we came home to find his last attempt was unsuccessful. It was a tragic loss and we are still heartbroken. JP still prays for him and Elsie calls every dog she sees (except Missy) “Walfee!” He was just shy of 8 years old and left us much too soon.

Josh and Megan celebrated 10 years of marriage on the beaches of Punta Cana, Dominican Republic in October. Thank goodness for free airfare and last minute resort deals or that never would have happened! We had 4 short days to sleep in, soak up the sun and play on the beach. It was pretty great.

We feel the love our Savior has for us all year, but especially as we celebrate His birth. We recognize we can not go through life without His help. We are extremely grateful for the prayers that have been offered on our family’s behalf and thank you for them. When we feel we can not go any further, we are buoyed up by the tender mercies often given to us from the Lord through our friends and family. Thank you – we truly are blessed to have such wonderful people surrounding us.

With love - Josh, Megan, JP and Elsie

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.

No (bad) news please

How did another month go by between posts? Also, did you know Christmas is in a week? I feel like I'm always trying to catch up with everything - like my life is constantly running a few steps ahead of me and I can't ever catch up to it or slow it down. Sigh.

I love Christmas. I love that JP is so wrapped up in the magic of the season. We've seen Santa three times this year - first at jetBlue, second with Make A Wish on the Polar Express and third at our neighborhood Christmas breakfast. Each time he climbs up onto Santa's lap he quietly asks for "Star Wars Legos please." It is the cutest thing. He can be acting like a terrible toddler one minute and then I mention Santa and all of a sudden he's sweet as can be. He's usually sweet, but you know what I mean if you have/had a 3 year old. Two words: mood swings! Haha.

I can't even describe how stressed I feel. There's so much to do between now and Christmas, and there's also this cancer thing we have going on. Some days I feel completely fine and the only worries I have are trying to get everything done and other days I'm overwhelmed with so many different emotions. A few weeks ago I told Josh I think we need to "check out" for a while. By that I mean turn off the TV, not get on Facebook, not answer the phone, etc. and just hide out in our own little bubble where everything is fine. I've been feeling overwhelmed with sadness and difficult situations. A friend of mine lost her 21 month old little boy (not to cancer) right after Thanksgiving. I can't even express my sorrow for her - my heart aches so deeply I can't even find words. I am physically sick over it because it was completely out of the blue and I just can't imagine that kind of pain. I feel a lot of guilt for ever complaining/feeling bad for myself about our situation and JP's cancer because he is still here with me. I get to hold him, hug him and kiss him every single day. Even if this cancer does take his life, at least I still have some forewarning and have the different perspective to try and be more patient, loving and grateful. I don't even know if that makes sense, having guilt. But I feel it immensely.

And then there is the Newtown, CT shooting. I didn't dare turn on the TV or look at Facebook because as soon as I saw some news headlines briefly telling what happened I knew I couldn't handle details. I finally was able to read one article yesterday but not without tears. What kind of world are we raising our kids in? Again, feeling a lot of guilt that my son "just has cancer" but he's here with me. Those parents had no reason to believe that sending their children to school that day would be the last time they'd see them. I can. not. imagine. their sorrow. 

We also have 3 cancer friends who are currently relapsing which literally scares the hell out of me. How can I be so naive to think this is going to be fine and dandy, just like it has been going for the entire time? At some point it can't keep being the best case scenario for ALL. Or can it? I know they say bad things happen in 3's, but I feel like the last few weeks it's been some bad news every few days and my heart just keeps aching. 

JP is doing fine. There honestly is no reason for me to think otherwise. Yesterday he woke up with a cough, and I am pretty sure that's my fault. I've been fighting a cold for just over a week. I guess I'm surprised it took this long for him to catch it from me, but I'm also scared I made him sick and his body isn't going to be able to fight it. So far he seems fine, even though he had a low grade fever today (99.1). 

I just can't take any more bad news. Please feel free to text me happy things like people having babies or good Old Navy sales. I might just hibernate until all bad things are over.

Maintenance

This is not in chronological order, just so you know. I still need to write about our CureSearch walk, Interim Maintenance II days 31 and 41 and Disneyland. Be prepared to back track! These feelings are just so fresh and I can't stop thinking about it so I had to write it out.

After a wonderful few days in Disneyland, we had to come back to our reality and get back on track with our treatment of this ugly monster. We had blood drawn on Sunday, November 4th to see if JP was healthy enough to start Maintenance. You see, after you finish all the treatments in each phase there is typically about a 2 week recovery period where counts are usually pretty low but "recover" so you can start the next phase. In this instance, JP needed to have an ANC of 750. (Remember that normal people are usually 5,000.) So Sunday night we call the lab to find out where his ANC is because we had an 8:00 am appointment Monday morning. His ANC is 700. Hmmm... we weren't sure if we were supposed to show up in the morning or not! I called the on-call doctor and she went over his labs and told us there was no way - his ANC was actually 690-something. We decided we'd call in the morning to see what they wanted to do. Once we got ahold of clinic they told us we could recheck his counts or wait 4 days and recheck then. Well Josh's grandpa died on Nov. 1st so we were planning to fly to New York for the funeral on Thursday night and we did not want to leave JP right after he started a new phase so Josh and JP headed to the hospital hoping he made counts. His labs came back at 800 so I found a sitter for Elsie and went to the hospital.

Like I've mentioned before, we are participating in several studies to (hopefully) improve the treatment plans for ALL kids and the main study we are on randomizes patients in their Maintenance phase to see how they respond to treatment, whether higher doses of the medication improves the mortality rate or if lower doses can yield the same results, thus lessening the long term side effects of treatment. Many people don't realize that simply treating cancer can cause serious late-effects - infertility, heart problems, secondary cancers, disabilities, the list goes on. Our hope is that JP will beat this beast and go on to live a normal life. We realize there will likely be late-effects and we can only pray they do not interfere with his ability to live as normal of a life as possible.

Before I got to the hospital they randomized JP. In addition to all the medications he has to take daily and/or weekly, the arm of the study we were placed on involves the lowest dose of weekly oral chemotherapy and Vincristine through his port just once every 12 weeks. When I heard this, my eyes welled up with tears and I couldn't help but to shake with fear. How do we go from weekly/every 10 days of chemo to once every 12 weeks?? Sure, lower doses of the chemo should lessen the likelihood of late-effects but what if the leukemia comes back in between treatments?? Or, even worse, what if it's not enough chemo over the next 2.5 years to rid his body of every single leukemia cell and we end up right where we started, only 3 years later and no further ahead?? I am so terrified of relapse. I don't know if there will ever be a time that I won't worry about it. I sat down with one of his nurses and expressed my fear. She explained that we'll still have bloodwork and clinic visits every 4 weeks so we'd know if something was off. If there is any reason to believe it isn't enough, we would immediately take him off the study and increase the Methotrexate and/or adjust his treatment plan. That made me feel better but I'm still consumed with fear. Cancer is a terrible thing to have to deal with. I know we are incredibly blessed to have "the good cancer" and so many people praying for us and we know the Lord is carrying us through all of this, but sometimes I still feel so heavy with the burden of watching my son fight cancer. How is this fair?

Happy 3rd Birthday JP!

For JP's big day, we decided to celebrate it after the CureSearch walk. He technically turned 3 on Monday, September 24th, but we figured family and everyone would be in town for the walk on Saturday, September  29th, so we'd have the "real" party then. I can't believe my little man is already 3! He is the still the size of a 2-year-old, my very own pint sized boy! 

Some little facts about JP at age 3:

His favorite food is Cafe Rio salad with little chips and sauce (tomatillo dressing)

His favorite superhero is Spiderman

His favorite movie is Cars 2

He is in the 5th percentile for height and weight, or in the 50th percentile for 2-year olds (meaning he is the size and weight of your average 2 year old)

He says the funniest things to us every day (I asked JP what his shirt said (it says "let's roll") and he paused for a second before he exclaimed, "Hey wagon! Let's bounce!" or "I have a diagnosis - you have stuffed bellyosis!" or one day I took my hair down and JP ran his hands through it while saying, "Mom, your hair looks great!" He followed that by holding my face in his hands while saying, "Oh Mrs. Gibson!" with a big kiss on my cheek or "I want to tell you a secret!" so I lean over and he puts his hands around his mouth and whispers, "I'm so silly!" then covers his mouth and giggles. I could probably go on and on...)

He loves, loves, loves anything Utes related. Mostly Swoop.

He adores his baby sister but sometimes the chemo/steroids/cancer drugs get in the way of his better judgement and his sweet hugs turn into choke-holds and pats turn to hits. Maybe that's not a cancer thing and just a toddler thing?

Every morning when he wakes up he needs to know where his "cute baby," "sweetie," or "my baby" is. And the moment he sees her it's, "Hey Elsie girl! It's brother boy!"

He loves his Nurse Amanda, our home health nurse. She comes to draw his labs before chemo so we see her quite often. He calls her Nurse Amanda and himself Dr. JP and he will give us a full check up after she leaves - the same way she gives him check ups. 

He can count to a million (ok, slight exaggeration)

He is better at the iPad, PlayStation and Wii games than me - how is that possible? 

He loves to play NCAA football (PlayStation) with his daddy.

He has a huge heart and hates to see anyone sad. "Mommy, are you sad? *kiss* There, don't you feel better?" and "Let's take these cars to my cancer kids at the hospital so they can feel better like me!"

He is an amazing example of strength - without even realizing it. He has no idea how brave he is.

Moving on to the celebration part of him turning 3... We have a friend from when we lived in Cedar City who bakes amazing cakes for her friends. She sent me a message on Facebook and asked if she could make JP his birthday cake. Um, yeah! We all know I can't frost cakes to save my life so this was an amazing offer. I didn't realize just how amazing it was going to be until she delivered it and JP broke it basically immediately because he tried to pick it up to put it on thinking it was a real Utes football helmet! It really was incredible - I can't even imagine how long it took her. All I know is that every cake he will have for the rest of his life will never be as awesome. And that's ok.

We went to a park and had a small lunch and let JP run around playing with his cousins and a few friends. I remember sitting at a picnic table watching JP run around on the grass giggling and chasing/being chased by his friends/cousins/uncles and I had to keep blinking to clear the waterworks from my eyes so I could see it clearly. He was just SO HAPPY. I hate that cancer took our care-free summer of running and playing away from us. I hate that we couldn't even do "normal" summer activities (like playing at the park) because his numbers were too low to be around other people. I hate that all I see is germs wherever I go. That being said, JP's birthday could not have been more perfect and even if it was just for a day, we were able to pretend we were kinda normal. It was nice!



Just look at the joy on his face! 

He seriously loves Swoop. As in L-O-V-E-S Swoop.

Tearing into his gifts

Ever wonder where JP gets his silly personality?

Thank you to everyone that came to the walk and/or to JP's small birthday gathering. We are tremendously blessed to have such a large support system.