Sunday, November 6, 2011

How it All Began...

I can only imagine that most of you are wondering how we went from a normal family to having our baby in the hospital with cancer. So here is how it went:

We have had a crazy year, which started with us selling our home, moving into a rental house, and building a new home. We moved into our new home on September 10th. One week later we left for a two-week adventure to visit Washington, D.C., West Virginia, NYC, and Boston. The trip was a little ill-timed, but had been planned way in advance.

Toward the end of the trip Case started to get fussy. Understandably, we blamed it on the stresses of traveling and not being at home. We got home late October 1st (Saturday). The next day Case literally slept all day. I woke him up at 11:00 to nurse and he went right back to sleep. I woke him a few hours later to feed again, and he threw up (on me). I jumped in the shower with him and he fell asleep in the shower. So I'm thinking, "what is wrong with my baby?" The next day Graydon came down with a fever, the typical 24-hour kid bug. So I blamed Case's sleepiness and fever on the same thing.

On October 4th (Tuesday) Case had his 9-month check-up. I mentioned the full day of sleepiness and fever and our doctor wasn't too concerned. He thought the same thing: little kid virus. That day he got a flu shot. The next few days he continued to be really fussy. This time I blamed it all on the shot. My kids are always grumpy and feverish after shots.

Then on October 7th (Friday) he cut a tooth. The poor kid had a raggedy piece of skin hanging from where the tooth came I again blamed his crankiness on this horrendous teething occurrence.

Then on October 10th (Monday) he caught a cold. He lost his voice, had a runny nose, and a cough. The poor kid couldn't catch a break! The cold lasted a week.

So with all of these things one right after another, it was easy to blame all of his symptoms on his back-to-back sicknesses. For those two weeks he stopped sleeping through the night, and his naps were either really short (45 minutes) or really long (4-5 hours). He had always had a voracious appetite before, and now he only wanted to nurse. My super happy, easy-go-lucky kid was suddenly a super grumpy baby. His diapers started to dry up too, and then when he would have a wet diaper, his urine was really dark. He just wanted to be held all the time with his sweet head resting on my shoulder.

I was worried about him, but I couldn't pin my finger on one thing, especially with everything he had been through. So I tried not to worry too much and waited for things to pass. But then another symptom popped up that I couldn't ignore. On October 12th (Wednesday) I noticed that the corner of his eyes looked a bit yellow; just like a baby with jaundice. The next day Xavier noticed it too. My mom suggested that something might be wrong with his liver, since yellowing of eyes and skin can be a common symptom. Also, the next night at 1:30 am he woke up because he had vomited. He didn't have a flu bug and hadn't just was just a random vomit that seemed very out of place.

So I made an appointment to see our doctor again on October 14th (Friday). Since I called that morning I couldn't get in to see our pediatrician, so I saw the nurse practitioner, who was brand-new. I told her all of the symptoms, including the yellow eyes. She checked him all out, palpated his tummy, looked at his eyes (made no comment), and ran a CBC screen on his blood. She called later to say that his white blood cells were not elevated, so there was no infection, and he did not have anemia. So we were to just watch him and ride it out.

I had been praying that if something was really wrong with my baby, I would know that we needed to get help. I tried to get that help on the 14th, and it obviously didn't get us anywhere. The nagging feeling that something was really wrong just didn't go away. That whole weekend I fretted about him. It made it more serious to me when Xavier was clearly worried too. Our baby just wasn't himself.

On October 16th (Sunday), we visited with some friends and neighbors, who clearly could see that Case was not himself. The yellow eyes were apparent and his change in personality could not be denied. I knew that we weren't just over-reactive parents. I decided that I would call the next morning to a doctor who had recently left our pediatrician's practice to get a second opinion. At the worst, I thought Case had some liver dysfunction that would need medication to correct it.

The next morning, October 17th (Monday), I called Dr. Kim Smith on the way to drop Graydon off at pre-school. I got an appointment with her that day at 10:30. So I went home to get a couple of hours of work in...just like any regular day. I woke Case up from his nap and ran out the door. Little did I know that everything in our world would come crashing down!

First, I must say that I know that Dr. Smith was an answer to our prayers. She was observant and listened to everything I had to say. After explaining everything that had been going on, she felt his tummy and checked out his yellowing. She calmly told me that she was very concerned for our baby. She told me that his liver felt twice the normal size. She took Case in her arms and told me to call Xavier and have him meet me immediately at Children's Hospital (the campus in Plano) to have blood tests and a scan.

That is when the panic started to rise in me. I burst into tears and told X to leave work right away and to meet me at the hospital. I am thinking somewhere along the lines of Hepatitis A (from exposure from our long trip) or, again, some sort of liver dysfunction. Something is definitely wrong with my baby and I cried all the way to the hospital.

We get there and my parents and sister meet us there. We go into the ER and get Case hooked up to an IV. His blood tests come back relatively normal, so we moved on to an ultrasound of his belly. Xavier and I were with him during the ultrasound and I had such a sick feeling. I couldn't bear to look at the screen. The ER doctor came in a bit later to tell us that there was a "mass" in Case's abdomen that looked like it was coming from the liver.

"Okay, I'm freaking out internally, but calm on the outside," I think. "Liver dysfunction...just what I thought. 'Mass' definitely means benign to me." Then the sweet ER doctor looked at us and said, "I've called the oncologist at the Dallas Campus and I'm going to have you transferred down there."

I'm just trying to register all of these words and I remain calm. Then I look at my mom and she has silently started to cry. All of a sudden I'm on high alert and I think, "wait, she just said 'oncologist.' That's a cancer doctor. Why did she say that?" I asked her point-blank..."do you think my baby has cancer?" By now we're all crying and the ER doctor starts crying herself and says that she can't be sure, but it looks like it might be.

Confusion, shock, bewilderment, and agony all rip through me! The unknown is now the enemy, and I talk myself into believing that my baby has a tumor, and that the biopsy will show that it is benign. We wait for a transport team to take us down to Dallas in an ambulance. My darling baby has now been going for about 6 hours without a nap and they don't want me to feed him, just in case he goes in for tests that night and needs to be sedated.

Two paramedics strap Case to a gurney, and the ride in the ambulance was a long one. I switch back and forth between silently crying next to the ambulance driver and convincing myself we are just having a quick surgery to remove a benign tumor. When we get to the hospital I follow the transport team through a maze of corridors. When we walk through the doors of a unit and I pass the big sign that reads "Center for Cancer and Blood Disorders" I am partially in denial and partially gripped by horrible agony.

I keep thinking, "this morning I was just dropping off Graydon at preschool like a normal mom and now I'm in the Center for Cancer and Blood Disorders at Children's Medical Center? This isn't happening!" It is every parent's worst nightmare.

So there you have it...this is how it all began. Fortunately, through the next twelve days of being in the hospital we learned that there is hope and that faith is real. We have come to accept this new life, as denial would only be detrimental to our family. We have already learned valuable lessons from these past three weeks, and know that there are many more to come.


  1. One day Case will read that story and be amazed at the things he endured and his parents and family endured as well. Your faith and trust in the Lord is so inspiring! We have so much hope that after this rough ride of chemo and doctor visits, Case will be back to his normal, happy, adorable self and live a full life! Every single person in our family prays for that every single day. We love you guys more than you know!

  2. Thanks for sharing this. I've been wondering how it all started so thanks for posting it. I can't imagine what you have been going through. You are so strong! You are in our thoughts and prayers!

  3. We have been Praying for you guys ever since we heard the news. Hang in there i can't even imagine the roller coaster you have been on.

  4. Thank you for sharing. This had me in tears all over again. I love you Emily and admire your strength. Praying multiple times a day for Case and your family!

  5. My 4-month old had Kawasaki's Disease last year and your story sounds familiar. I chalked up symptoms to shots too until things were clearly more than that. I'd taken her to a doctor just that morning to look into things but nothing definitive was found until I took her to the ER that evening when I realized she hadn't nursed all day. When your child is in the hospital, it's such a dizzying experience. My thoughts and prayers go out to you and your family.

  6. (You don't know me - I followed a link from Krista Oaks' blog.)

  7. We love you guys. Thanks for posting the full story. I was wondering how this all came to pass. Please know that we are praying for your baby and your family. My heart aches for you, but at the same time I am amazed by your strength. We love you all.

  8. Thanks for sharing Emily. I think about you guys often.

  9. Thank you for sharing this. It is hard to read this and not get emotional. Like you said in your post it is every parents worst nightmare! Your faith and strength is amazing. We hope and have faith that Case will do well with the Chemo and that his tumor will shrink so that they can remove it all. You make me stronger. We pray every day and fast for you guys. We love you!

  10. Wow, the raw emotions came creeping back up. I'm so amazed at your strength. I love you guys so much. Case is constantly on my mind and in my prayers- and the kids prayers. Love Kendra

  11. As I read this, I am reminded about what you said to me in the hospital a few weeks ago: That your family will be forever changed because of this trial. You will cherish each other a little more, love others a little more, and show more gratitude to Heavenly Father on a daily basis. This is your Job trial and in the process you are inspiring us all. Thank you for your faith and strength. I know that our family is now forever changed for the better because of you.

  12. Your writing is beautiful.What a tough road ya'll have already been on.Continue to feel the love of your Heavenly Father,family and friends.May you pull comfort and strength from them.Bless your sweet little one. Laurie G.

  13. Thank you for writing this. We continue to keep praying for little Case and your family. Love you guys!

  14. Thanks for sharing this Story, I know it must be such a hard one. My heart aches for your little family and all you had to go through to get to this point. I'm just so happy that Case is smiling again and I just know things will be ok soon. I love you guys!

  15. Emily,
    I am thinking about you and your darling little boy and family. I am praying for you all and now our dear Baxter's are going through hard times too! So lot's of prayer and strength being sent from Oregon. Thanks for having this site, it helps so much. Love , Mary