New Nickname

Brian came up with a new nickname for Jackson today. He calls Jackson "chemo-sabe". In The Lone Ranger it was used and meant 'faithful friend'. But in The Lone Ranger they spelled it kemosabe.

Chemo-sabe. Ha! Get it? Chemo? Ha!! I laugh at Brian's cleverness. Even after all this time he can still make me laugh.


Jackson loves the new nickname. He likes being his Daddy's faithful friend and sidekick.

Pollyanna

Today was a good day as far as Jackson and how he was feeling. He isn't confined to his room, so we took a walk this morning down to the security department to get a name tag made up for him. He is so proud of his name tag, it says:

Jackson

Cancer Fighter!

Jackson still had lots of energy, and because of the anti-nausea medications that he is on continually he has been feeling pretty good still.

Today was emotionally exhausting for me, but not necessarily from hospital stuff. Today was the funeral of my Opa (my Dad's father) and I wanted to go, but I needed Brian to be by my side. Our wonderful friend came up to the hospital and sat with Jackson while we went to the graveside services. It may not have been a big deal to her, but knowing that my son is being watched over by someone who loves him made it a little easier to leave him. He doesn't ever want to be alone, and for him to be okay with both Brian and I leaving was a HUGE deal. I never worried about Jackson while I was gone. I knew that Jill would take great care of him- how did I get so lucky to have such a great friend?

When we got back from the funeral we had Jackson get up and out of his bed and go out to the play area. We are trying really hard to keep him up and moving this round of chemo so that his muscles don't get so weak. We played a flying monkey game with Brian's dad, and then on the way back to the room we learned that Jackson can just stand on the IV pole and go for a ride.

I feel like every time I blog I get all mushy and talk about how lucky we are. Sometimes I wonder if I am too "Pollyanna" about everything. I know if I look at our situation I can either drown myself in self pity and anger or I can look at the big picture and know that I do not understand everything. I will never understand everything, but I can choose to look for the good in every situation. I learned this perspective from my parents and I hope to be able to teach it to my children. When you look for the good, you will surely find it.

Even though our situation is not ideal- our son is going through chemotherapy for a highly malignant brain tumor and my Grandfather's funeral was today- I can still look for the good. I can still find lots of good to celebrate. Today we celebrate that Opa lived a full life and that he is in heaven with his sweetheart. Today we celebrate that Jackson was feeling good. Today we celebrate that so far the chemotherapy side effects have been minimal. Today we celebrate in family and friends. Today we celebrate life and the time we get to share together.

See... I told ya, I get all mushy and "Pollyanna-ish".

Meh. Take it or leave it. But honestly it was good day although emotionally exhausting.

Round 2 Begins

Today we started round 2 of Jacksons chemotherapy. He has already gotten one drug and another is being administered as I type (it takes 4 hours to get all of it into his system). Tonight will be a long night of waking every two hours to make Jack go pee. The big chemo that he is getting tonight is called Methotrexate- it is the Big Nasty Drug. Because we have had it before we know that it causes Jackson horrible mouth sores, and lots of vomiting. He also got another drug tonight that we know causes bone pain and stomach issues.

Here the nurses are checking to make sure they are giving Jackson the right chemo.

Even knowing what we are facing I am still filled with hope.

Today was such a great day. We went to the zoo and then we were so lucky to be invited to go to the U of U hospital and have a tour of the AirMed helicopter. We felt so spoiled and got first class treatment by Jared (the air-medic).

Today at the hospital was also probably my favorite day so far. Jackson and I laughed and played a memory game (at first I thought I would let him win, but pretty soon I found I had to really struggle to keep up- that kid has an AMAZING memory!!). We made a lady bug out of beads and boondoggle. I really enjoyed just being with him today. I enjoyed seeing him have energy and walk to the bathroom with out wobbling. I have enjoyed watching him light up as he told the nurses about seeing the AirMed helicopter. I know it isn't going to be long until he doesn't feel good again, so I am glad we got to enjoy today together.



I rode up in the elevator tonight with 3 other parents. I know that they are parents because of the type of name tags they wore. I was happy. I was smiling as I entered the elevator, excited to come play more games with my son. I took only a moment to watch the others as we rode together up to the 4th floor. I could see the woman in the pink dress, she was very well put together but I could see the stress she carried in her shoulders. I could see the worry she was feeling in the way she clenched her teeth. I couldn't help but notice the way she clutched her purse with white knuckles. Then I looked at the man next to her- I can only assume he is her husband. He was visibly exhausted. He stood there rubbing his eyes and rumpling his hair. Neither one of them made eye contact with anyone else in the elevator. I never heard them utter a word- but I didn't need to, just watching them I could tell that they are dealing with something big.

The other man in the elevator wore a wrinkled blue t-shirt. And he seemed to be in a big hurry. To be honest I didn't pay much attention to him because I couldn't stop looking at the woman. I could feel her pain. Perhaps as another mother I felt more compassion for her. But then again maybe I just felt more compassion because I could sense her anguish.

The elevator ride only lasted a matter of a few seconds but as I left the elevator I felt my mood change. I had tears in my eyes for those people. We are all in different situations but we are all at the children's hospital tonight cheering for our little ones. We all worry. We all love. We all feel alone at some point. We are all trusting strangers to take care of our babies.



Jackson is asleep now. He is on heavy medications to help control the nausea. He is my hero. He is doing things that amaze me. He is so strong and resilient.

There is a wonderful video that the American Childhood Cancer Association came out with called "Paul and the Dragon". It is a movie about a little boy that has cancer but imagines the cancer to be a big scary dragon. Jackson loves the movie and I think it has helped him understand better what is going on inside him with the chemo drugs, and the hair loss. Tonight I was drawing a picture of him fighting the cancer dragon on his board and he told me that his cancer dragon is already smaller- that he is already beating the cancer and that he is winning this fight. I believe him. I have to believe him. He is so strong. He is a fighter. He is my hero.

Follow the Yellow Brick Road

Home. There's no place like home. What a true statement.

I was thinking about Dorothy and the Wizard of Oz last night as I was falling asleep. Here she was in a new, and scary place and she has to fight to find her way back home. She follows the yellow brick road which is hard at times, but along the way she meets new friends and they make her trip bearable. I feel so much like Dorothy. We're on a new path and at times it is scary, but already along our way we have been meeting new friends that have encouraged us. The Emerald City that we are trying to get to is the "Cancer Free" stage. Remission. Maintenance.

Right now the yellow brick road seems very long, and still it is a bit scary.

We've been home now going on 4 days. It is amazing how much peace and joy we find in our home.

Tuesday night when we came home Jackson immediately wanted to play with his Lightning McQueen race track. Brian set it up downstairs, then came to talk to me while I cooked dinner. While we were upstairs, we could hear Jackson yelling at Hailey "No Hai- DON'T TOUCH THAT!" I looked at Brian when I heard the yelling downstairs and I said that it was like music to my ears- he promptly agreed. Then we laughed, because what kind of parents are we that we enjoy hearing our kids fighting?!

Our time at home so far has been pretty low key. We stay at home most of the time, but every night we have gone for a walk around the neighborhood, and we've been on some bike rides (Jackson and Hailey in the bike trailer). Yesterday we went and saw Cars 2 again and Jackson was in heaven.

Energy and health wise it has been different than I expected. Jackson gets tired very easy. The first day home he got home from the bike ride in the trailer and he was exhausted- he took a nap most of the remainder of the day. He even fell asleep on our evening wagon ride. Eating has been a struggle for Jackson too. Nothing sounds good, but usually when something does sound good it doesn't taste good. Very often when he does eat he ends up throwing up everything. He is getting so skinny and I worry about that more than I share.

Each day he seems to have a little bit more energy. This morning he actually rode his bike to our neighbors house next door and then back. He may have over done it a little bit, but it sure did my heart good to see him on his bike.

Here we are, on the yellow brick road. We are finding fields of poppies, and also scary forests. Together we'll walk hand in hand and we'll see where this road takes us. But for now, we are enjoying our break from the road and relishing in being home.

Good days are here again!

The last few days have been wonderful! Jackson has been fever free, his ANC is coming up (the important blood count number) and he is starting to feel better.

He has been laughing and smiling today, and it feels like my little guy has recovered mostly from the chemo- and the other nasty infections that the chemo caused.

Jackson has felt well enough the last few days that we have been busy doing crafts and he has even been out of bed a few times. He still can't leave his room due to the C-Diff infection that he is fighting, but the fact that he is willing to get out of bed makes me so happy.

Today we had a little buddy move into the room next to us. I had met Skyler's mom before, and I told Jackson that there was a little boy his same age moving in next to us. Jackson wanted to get out of bed and wave to Skyler through the window. Jackson stood by the window for a few minutes watching for Skyler but we then realized that we took too long to get out of bed, and that Skyler was already in his room. I guess we'll have to wait another day to meet Skyler.

Even though we didn't get to wave at Skyler, I thought this picture was so cute. It reminds me how tiny he really is- yet he was so happy that he was tall enough to see out the window.

Jackson's pain is under better control now. In fact if Jackson can start eating, and get his pain under control we may be able to come home later this week (I hope I didn't just jinx us).

Hooray for good days and happy children!

One Month Ago

Exactly one month ago we sat in the Neuro-surgery exam room and we got Jackson's diagnosis. One month ago Brian and I held each other in that tiny exam room and we cried together. One month ago our family took our first step down this path of cancer.

Tonight as I sit in the hospital room I have many emotions. Tonight as I sit here, I am less overwhelmed with some things, yet more overwhelmed with others.

Over the last month so much has changed, but surprisingly so much is still the same. Our life has changed, but those in our lives that make it worth living are still here supporting us.

I have more knowledge about certain chemotherapy drugs now, because I have seen them in action. I have more medical knowledge about cancer treatments, drugs, and procedures. I know more about blood than I ever did before. I can almost read the results of a CBC now with out help; and I know the important numbers without help. I have met many nurses and doctors, and I have come to love some of them and I am still learning to love others.

Our lives are different now than they have ever been. Our living arrangements are a bit confusing now- where exactly do we live? Most of the time I don't know what day it is; I am surprised how quickly time flies at the hospital.

Home is something that I used to take for granted. Home. I can not wait until my entire family can sleep under the same roof again. I long for the days when we will once again get to eat dinner at 6:30 around the kitchen table. I am looking forward to being able to perform mundane tasks for my family once again- laundry, dishes, cooking, cleaning. I am excited to kiss both of my children good night and tuck them both into their beds and be under the same roof. Being together is something that I hope to never take for granted again.

Over the last month our lives have changed. Obviously. But the part that amazes me the most about the last month is the amount of love we feel from every direction. People coming to visit Jackson at the hospital. People reaching out and giving gifts to brighten Jackson's day. Meals brought in several nights a week. Kind emails and text messages often make me cry. Our yard has never looked so good- and we haven't lifted a finger. Talks of fund raising dinners and 5K's and Luau's. People ordering shirts, hats and bracelets all saying "Go Team Jackson". All of it amazes us. We are grateful for all of it, and yet there are no words gracious enough to express our heartfelt thanks.

I have learned over the last month that I am stronger than I thought I was. Over the last month the pride I have for my son has grown so much that it is now immeasurable. Over the last month the love and admiration that I have for my husband, Brian has increased beyond my imagination. And over the last month I have seen my daughter adapt from a very structured life to a very chaotic life, and yet she is still flourishing beautifully.

Over the last month my testimony of charity has grown so big that it is bursting at the seams. I have heard my entire life about charity being the "pure love of Christ". I never understood charity until now.

The last month has changed me, and although it has been insanely difficult, I believe that this change has been for the good. I am stronger because of the trials that we are going through. I am so grateful that I have a firm foundation to stand on.

It all seems so long ago, yet it is all so fresh in my mind. One month has passed and we are still spinning, but somehow we are making it. And somehow we are managing to find joy in our journey.

Middle of the night e-mails

Every other night Brian and I switch shifts at the hospital. One night we spend at the hospital and the next night we get a good nights rest at home with Hailey. This has been working very well- although it has been hard to be apart. During the night things at the hospital are still pretty eventful, and rather than sending texts or calling we send emails to each other... that way the one of us at home can still sleep well, but get the quickest update as soon as we wake up.

The other night when I was at the hospital this is the email I sent to Brian. I sent it at 4:38AM. I think it's kind of funny now, what chaos in the middle of the night!

Man I am getting one one funky sleep schedule. Woke up at 3:40 all by myself then jack woke up at almost 4:00 on the dot. He has to pee.

Hurry mama.

Stand him up and just getting gloves on when he says no, now he has to poo and BAD.

Keep putting gloves on, grab the nose tube syringes and plug that up.

Jack is whining and saying that he can't hold it that he is going to have an accident.

Panic sets in Huge now. Push the nurse call button.

Get the tubes untangled from the nurse call button. Undo his toe pulse ox monitor which is hard because it is dark and I am wearing gloves.

Pick him up and realize I forgot to unplug the IV pole. It is plugged in into two different plugs but didn't notice the low one so I just start pulling the tower into the bathroom.

He is screaming that i am hurting his leg which is probably true because of all of the injection sites from the Neupogen.

Fight the whole way to the bathroom against the cord that is still plugged into the wall.

Finally get his unders pulled down which is difficult because he is all sweaty and I am wearing gloves.

Make it just in time without an accident. Oh no, then he needs the puke bucket.

Hurry as fast as I can into the other room to grab the puke bucket and have to get back and hold the tube in his nose while he throws up so that he doesn't puke it up.

He is sweaty and his hair has fallen out everywhere so now he is covered in sticky sweat and hair. I too am sweaty and covered in his hair.

All the while the pulse ox thing is beeping because I forgot to turn it off and the nurse button is ringing. And Jackson is whining.

Get all of the bathroom business taken care of and almost back into bed and the nurse finally comes in to help. She had been stuck in another room helping another patient.

Get him all settled back in.

More hot packs for his belly.

Suction tubes all hooked back up.

PCA pump pushed to help with the pain.

Toe monitor back on.

Blankets and Toodles all fixed and settled in.

Vital signs taken.

Now almost 44 minutes has passed and he is finally ready to go back to bed.

All of that and I am thankful that I didn't have to unhook the oxygen funnel from his shirt. One more thing to unhook could have made this bathroom break turn into a far longer pit stop involving a full change of sheets and clothes.

A Good Day

Today was a good day. Jackson wasn't as grumpy and demanding as he has been the last few days. He wasn't in as much pain as he has been in, and he had more energy.

He and I were able to hang out together, play hospital BINGO again, do some crafts, watch some television and just talk. I am convinced I have the sweetest boy on earth.

When Brian and Hailey got up to the hospital today Jackson got out of bed and onto the floor to give Hailey a big hug. What a sweet moment. It was so nice to see him be able to move around a bit under his own will and power.

Even though this is a tough road we are still finding joy in our journey- the picture above is proof of our joy. I have recently been meeting several moms of other kids that have cancer. One of those moms gave me a new perspective on our journey. It is a perspective that I appreciate and now hold dear. It is so accurate as to how I feel.

At first you are pushed off of a cliff, from your normal life, free falling and everything is insane. You are scared, unsure, panicked. Then you land and spend a good amount of time trying to get back up the cliff to continue on the path you were once on, the "normal" path. Eventually you realize you won't ever get back up there, no matter how badly you want to, so you start walking down this other path of cancer, and try and look for the beauty here too. It's not the same, but it's the only path available to walk.

Visitors

We appreciate that so many of you want to come and see Jackson at the hospital. Unfortunately we need to limit visitors right now because of his low counts and the infections that he is dealing with.

Please contact us before you visit.

Again, we appreciate that you want to see Jackson, but we are doing our best to keep him healthy. Thanks for understanding.

Wagon Rides

Jackson has been stuck in his hospital room for days. The only time he gets to leave is when he has to go get more tests or scans.

Yesterday he got to go for two different wagon rides. One in the morning and one in the afternoon. He got to have a chest x-ray in the morning due to his lowered oxygen levels, and he went for an ultrasound yesterday afternoon to see if they can find the cause of his stomach pains.

We ride in the elevator down stairs, get the tests done, and head right back upstairs. Usually Jackson whines and whimpers in pain the entire time.

We found part of the reason for his stomach pain and for some of the fevers. Jackson is struggling with several infections. One in his blood, and one called C-Diff which is causing the stomach pain. Luckily the Pancreatitis is getting better. We thought we were half way done with our first hospital stay, but turns out we'll be at the hospital until things resolve themselves- perhaps another 2 weeks.

Blood Transfusion

Today Jackson got his first blood transfusion and the nurse warned me that it might freak me out to see a bag of blood hanging from the IV pole. Surprisingly I did fine. The blood seemed to give Jackson more energy and he was very talkative when his friends Lucy and Hailey came to visit.

Today was a good day in comparison to the past several days. Jackson is still in a considerable amount of pain, but his energy level has increased like I mentioned above. The nose/suction tube seems to help a HUGE amount with stomach pain, but Jackson's biggest complaint is that he is thirsty. He can't eat or drink anything, and although the IV keeps him hydrated, he is still craving something to drink.

Jackson's hair is falling out at a rapid pace now. I would say he is 75% bald at this point. The back of his head is bald from where his head rubs against his pillow, and the top is bald where he can touch, but the sides of his head still has lots of hair. The hair loss has been far more difficult for Brian and I than we thought it would be. Jackson also is pretty sensitive about it, and will not allow us to buzz his hair, he just wants to let it fall out however it wants to.

Staying at the hospital like this has been more emotionally taxing than I thought it would be- for our entire family. None of us are "great" anymore, we are simply surviving day after day.

Today

Today was exhausting. I question what I should share. Should I sugar coat things and say that my boy is amazing and that he is taking everything in stride? Because he is amazing and he is taking this into his stride. Or do I put down how hard this is, and make it sound miserable? Because it is hard, and at some points it has been very miserable- so miserable that Jackson screams out in pain and we can't do much to help him.

• Jackson's hair is starting to fall out. Only about a dozen strands today, but it is imminent.
• Jackson is NPO- which means he can not eat or drink anything until further notice. He is receiving all of his nutrition now through his IV- the Dr's call it TPN- we call it steak and potatoes, or even sushi. No matter what you call it, it comes in two bags, one is a yellow liquid like Gatorade, and the other is white and light sensitive and comes in a brown bag.
• Jackson had a tube put down his nose into his stomach today to help suck out some of the nasty stuff that is making him vomit. The tube will be in for a while, and it's unpleasant, but it is helping.
• Jackson spiked two different fevers today, and has been on 3 different antibiotics, which we hope will help fight the infections.
• Jackson has a morphine pump that keeps him comfortable, but somehow the pain still manages to find it's way into my boy.
• Jackson has Pancreatitis which was caused by the Chemo. Pancreatitis is extremely painful.

No matter what I say, or how I put it, I question the approach that I took.

Just know that this is the hardest thing we have ever gone through and that is changing who we are.

Platelets and Bingo

Yesterday we had more "good" time than we have in the last several days. We were finally able to get some of his pain under control, and for a few hours he perked up a little bit. In the morning we joined in the hospital wide game of BINGO. And later in the day some of Jackson's best buds came to visit him.

The hospital has a television channel that they broadcast a live BINGO game every Wednesday morning. The volunteers bring BINGO cards around to each child's room and Jackson gets to play from the comfort of his bed. They play two different games, the first is just plain BINGO, and the second is "Blackout". The volunteers announce every child's name who is playing, and every time they say Jackson's name he thinks he is famous.

During BINGO, they actually call out EVERY single option, so every child is a winner. If your child has a letter request, or a joke, or gets a BINGO, you can call in and they share the joke, or the success of the BINGO on air. After the game is over, but before lunch the volunteers bring prizes around for the kids that played. Yesterday Jackson won a car... a car that looks almost identical to the car he won last week. We really enjoy the BINGO hour, but by about half way through yesterday Jackson was exhausted, and I ended up playing by myself.

Yesterday was a first for Jackson. In fact, almost everyday brings a new first for us. But yesterday Jackson got his first platelet transfusion. Platelets are part of your blood that allows for clotting to happen. Jackson's platelets were very low, and they didn't like how low they had gotten, so he got his first transfusion.

The platelets are yellow like cloudy honey and it took about an hour to get the 8oz bag into my little boy. It was really weird for me to know that some stranger donated these platelets- perhaps to make a little extra money, and they helped to save my son's life. I am pretty sure I'm going to become a better blood donor.

Yesterday marked our half way mark... half way through our first round of Chemo.

Beads of Courage

The hospital has a program set up for seriously ill children called "Beads of Courage". The program helps children create their own record of their treatment. For each step of Jackson's treatment he earns a bead. Each bead symbolizes something that Jackson has had to endure, and each bead is something that makes me so proud of my boy.

Jackson has already earned an entire necklace worth of beads. It hangs proudly on his IV pole. He shows it to his visitors, and although they don't understand all of the steps he has been through, they can sense the significance of these beads.

Jackson earns beads for each Chemo drug he gets, each dressing change on his broviac line, each day he is in the hospital. He earns them for each test and scan, each visit to the clinic, each IV, each surgery. He has earned them for a spinal tap, MRI, CT Scan, morphine infusion, a stay in the PICU, and even for surgeries. He will continue to earn beads through out his treatment.

You can go to the Beads of Courage website and learn more about this amazing program. This program is amazing, and often when I think about it tears come to my eyes.

Tomorrow he will earn more beads, and they will hang on his IV pole as a sign of strength and courage. If you ever see Jackson, make sure to ask him about his beads- each time someone does he lights up- even on the tough days.

Joy

Today I went to church and once again the lesson in Relief Society was specifically for me. I guess the Lord knows exactly what I need to hear.

I tried to share a comment, and I should have known better. I was blubbering, and crying that ugly type of cry- you know the one where you can't breathe and you are gasping for air.

I don't even know what I said, or if what I said made any sense, or if anyone could even understand what I was trying to say.

I was tempted to share my testimony in Sacrament Meeting today, but I knew that there was no way I would be able to hold it together. I guess I can share it here. This seems to be a good place for me to write and express my feelings. It's a great place to be able to share my thoughts and no one has to see the tears and the snot running down my face.

This road has been so emotional for me spiritually. Every day it seems like holds multiple ups and downs for me. My cycle starts when I begin to get angry at God. Why my boy? Why me? Why my family? Why? Then I start to pray. I tell God how I am mad at Him. I tell Him that I don't understand, and that this is difficult. I tell Him that I can't do it alone. And almost immediately after I say that I can't do it alone, I get comfort. I have an overwhelming feeling that we are not alone on this road. He knows what we are going through, because He is right here with us.

During Relief Society today I tried to share my thoughts and because I am so emotional, I couldn't hold it together. I wanted to tell the ladies in the room with me that dishes and housework are not important. I wanted to tell them that joy can be found in everyday things, like bike rides and running through the sprinklers and puzzles and reading books. I wanted them to stop complaining about the messes and the things they have to do- because those things can bring joy if they allow them to.

This last week I was trying to blog on our family blog. The title of the blog was "One Life to Live". I have about a million pictures to add, and I want to document the million things we've done over the last few weeks. Time hasn't allowed me to blog as often as I would like. Time hasn't allowed for me to do many things, but I am finding time for the things that are important. My son, my daughter, my husband. Family; family is what matters most. The physical possessions are not important. We only get this one life to live, and because of the situation we are in, I have changed, and now I can see that I want to spend my life doing something that matters, and spending time with those things that matter most.

And even though this road is hard, we are still finding joy. We are finding joy in kindness, and compassion. Joy can be found in family, and friends. Joy is abundant if you allow it to enter your life.

Days at the hospital

The days here go slow and somehow the nights are even slower than the days. Technically today we are on Day B.

Jackson is on high intensity chemo and nausea, vomiting, bone pain, skin aches like a sunburn, and mouth sores are all things Jack is dealing with right now.

Only 2 days ago he was a different kid, riding a bike through the halls of this hospital.



Today we will cheer if he eats anything. Yesterday he only ate a few bites of a sandwich but threw it up hours later. He can't even keep water down.

We knew this would be tough but never this tough.