How the journey began

I never thought I'd be sitting here writing this post, let alone blogging in general. As my daughter sleeps next to me, my mom sleeps upstairs in our guest bed, and Dan and Elliot sleep in Elliot's bed, I hear the sounds of a quiet, peaceful house. I am grateful and reflective. Let me explain.

Wednesday, October 8 2014
I stayed home from school with Elliot today as he was complaining of abdominal pain. As the day went on, the pain didn't get better. His tummy was certainly protruded and very firm, but this wasn't too abnormal for Elliot. Lets just say that he has never lacked in nutrition. At 1:50, Julia, Elliot and I went to the clinic. After explaining the situation and a brief exam, the doctor suggested an X-ray to confirm what we were thinking: constipation. We packed up our "stuff" (aka: toys), and went upstairs for the X-ray. Upon returning, the doctor informed me that there was definitely a mass in his abdomen but that they couldn't confirm it to be from stool. My heart immediately sunk, and tears ran down my cheeks. I didn't know exactly what that meant, but I could definitely read between the lines. This wasn't good. She explained that our next step was an ultrasound, so a midst my tears and heavy heart, I listened to her instructions and headed back upstairs for both an ultrasound and some lab work. In the mean time, I called Dan and asked him to come to the hospital right away. Within minutes he arrived and we were in the ultrasound room, perhaps the same room where I saw his tiny little body in my tummy for the first time. We could definitely see the mass and were very confused as to what was going on. After some miserable moments of lab work, we headed back to the clinic. Once again, the doctor came in and informed me that the ultrasound confirmed what they saw in the X-ray and that they now wanted to proceed with a CT scan, which required an IV. Needless to say, getting an IV in a coherent two-year-old isn't an easy process. After three tries, and many tears from both Elliot and mommy, they decided to send us to Mayo, perhaps the best hospital in the world and only a driving distance of TWO HOURS. Wow...how amazing is that?

After packing an overnight bag (because certainly we were only going to be there one night) and getting Julia settled at home with a friend to await her grandparents, we headed to Mayo. It was the longest two hours of our lives. I had nothing to say and neither did Dan. As I looked at my sleeping little man in his car seat, my mind went to the worst place it has ever been...a place I never wish to visit again.

We arrived at Mayo around 10:30pm and got checked into our room. We were informed that our CT scan would be first thing in the morning. After getting settled, I laid next to my sleeping boy, held his hand with tears streaming down my face, and prayed...for I knew he was about to face the fight of his life.

Thursday, October 9 2014
As usual at a hospital, the doctors show up bright and early. Elliot had a descent night sleep, more than I can say for Dan and I. We are told that the key of the CT scan is to see where the mass is located more specifically and to what it is attached (either the adrenal gland or the kidney). The doctor nonchalantly shares the information that they are assuming the mass to be a malignant tumor based on various characteristics of the mass, its general location, and Elliot's age. At that point, I can hardly contain myself. My biggest fear has come to fruition. How can this be. Why can't it be me? So many questions and no answers. At this point, we felt as though we had nothing positive going for us. Until the CT scan, no questions could be answered.

After a long day of no eating or drinking for Elliot, we are finally on our way to get the CT scan. Elliot and I are riding on the hospital bed together heading to the scan. His head is buried in my chest with is blanky in hand and his paci in his mouth (a battle we chose to give up once this all happened...thank GOD for this paci). I have to lay Elliot on the scan table and hold him still as a mask is placed over his mouth and nose to put him to sleep. After about 15 seconds, his eyes get tired and he falls asleep. There he lays, small and innocent...my baby boy. Nothing I can do but walk away and trust him in the hands of the doctors. There's nothing worse than seeing your child experience pain and fear and not being able to do anything about it.

After general anesthesia, an IV, and a CT scan, we were called to the recovery room to be with Elliot. At this point, my mom had joined us and was able to be with us until we left the hospital. Elliot looked miserable in recovery. I hopped on the hospital bed and held him in my arms.

After recovery, we no more than got to our hospital room, and the team of hematology-oncology doctors arrived. My heart raced. They shared with us that the mass is most likely a Wilms tumor based an a variety of characteristics of the situation. Wilms tumors are very common and successfully treatable for children Elliot's age. The cancer appears to be contained and is attached to the kidney. Because the tumor has bled, they believe that trying to do a biopsy is not an option due to the risk of more bleeding. So, their plan of action is as follows: 12 weeks of weekly outpatient chemo, removal of the tumor, 12 more weeks of outpatient chemo, and then radiation to assure that any cancer cells spilled by the bleeding are targeted.

At this point, we are RELIEVED!!!!! I felt as though a ton of bricks was taken from my shoulders. It seems strange to be relieved by the news of cancer, but when you're faced with so many other options that are worse, such news is good news. After more than 24 hours of fear and pain, my heart feels joy again. I can see light at the end of this long, dark tunnel, but the tunnel isn't what matters, it's the light at the end!

Friday, October 10 2014
Another day of no eating or drinking for Elliot in preparation for surgery. Today Elliot will receive his port by which he will receive his chemo and blood work from this point forward. Although there is anxiety for the surgery, there is also a sense of God's peace that has taken over the entire hospital room...one that was completely unexpected. After a long day, we hop on the hospital bed again and head to surgery prep. Thankfully, it was seamless process. Elliot did great.

A short time later, the doctor finds us and brings us to recovery. Once again, I hop onto the bed with Elliot and hold him in my arms...no where I'd rather be. Over time, he comes back to reality, and we begin the comforting process. We make it back to our room in time for some much needed nourishment for the little man. He was doing fantastic considering what he had just been through. Once back in the room, he immediately pulled out his pajama top and looked at his port. Not knowing what to say, I say, "Elliot, that's your new friend. He's gonna be with you for a while." He smiles and says, "Ok." Since then, his new friend has been named "Tubey". :)

Later that evening, Elliot received his first chemo treatment. Surprisingly, he did quite well. It was late at night, so shortly after the treatment, we all went to bed with a smile on our faces and a sense of God's peace in our hearts.

Though this journey has just begun, we are trusting in God for a smooth year ahead. We have had family and friends surround us in a way I never thought possible. Our blessings are endless and our gratefulness goes beyond what words can express. Meals, gifts, prayers, resource connection, tears, time, and so much more...friends and family have truly gone above and beyond. I wish I could sit with each of you and share my sincere gratitude, but for now, please know that you are in our hearts and prayers.

Please pray as we make our first journey back to Mayo tomorrow for Elliot's second chemo treatment. May his heart be peaceful, his body restful and his spirits feisty as always!


Holding mommy's hand


Elliot in recovery after CT scan

Family time

 Being entertained by Uncle Dave

 Some comfort from daddy during vitals

 Poor boy is exhausted 

 Can't eat or drink BUT a Popsicle helps a LOT

 Face-timing with cousin Arie

 Grandfather, daddy and Uncle Matt

 Lovin' the hospital toys

 Some comfort from Gaga and Grandfather

 So happy to be with big sister Julia