Chemo #2 and Fever scare

Sunday October 19, 2014

Thanks to my fabulous husband and my amazing brother and sister-in-law (TJ and Jodi), I got to catch up on some much-needed sleep this morning. My eyes opened at 10:45am! I can't remember the last time I slept so long, and I feel like a new person today! However, I realize that you're not reading this blog to hear about my sleep! :) So lets rewind to Friday.

Friday October 17 2014: chemo #2

It was an early morning as we had to be at Mayo for labs at 7am. So at 4:00, we heard that terrible alarm sound (it made me think of my NLXF friends who get up every day for a 5am workout...how in the world?).  Thankfully, Elliot woke in very good spirits and was ready for the day, more than I can say for Dan or myself. He remained awake the entire two-hour drive to Mayo. I'm not sure why, but at least he was happy. Upon arriving, we got to experience the lush, exotic-hotel-like, waiting area in the pediatric hematology-oncology clinic. For those who have been there, you understand. It is simply amazing! As we are waiting and watching Chicken Little on one of the TV's, Elliot hears his name over the sound system...Elliot Sundblad please. He perks up and looks at me with a proud expression and then repeats his full name. It was a priceless moment. Moments later, though, he laid eyes on the nurse who was awaiting us and immediately started crying. Suddenly, his entire demeanor changed, for he now knew why we were here...port access, labs, poking prodding, etc. Thankfully, everything went quite smoothly. Other than getting "Tubey's tail put on", and then removal of it at the end of the day, it was a pretty painless experience for Elliot. We had numerous appointments and all went quite well. By 1:00pm, we were on our way home again (after grabbing some Chipotle of course). When we got home, we swung by a friend's house to pick up Julia and spent the rest of the day as a family!

(Compliments of Jodi Sunderman...more below)

Saturday October 18: fever scare

We had a great morning relaxing with Uncle TJ, Aunti Jodi and cousin Arie. Elliot was so excited to have them here. A midst vigilant hand-washing and minimal contact with Elliot, it seemed to be a relatively normal Saturday morning, the way it used to be prior to Elliot's diagnosis. It was wonderful. Jodi took some beautiful family photos, something I wanted to get done prior to Elliot's hair loss (not that he won't be cute, but I really don't want to send out a Christmas card that will create pity or sadness).  

Shortly after pictures, Elliot and I snuggled up on the couch to watch a movie while everyone else continued playing outside. It was clear that Elliot had hit a wall and was in need of some down-time. Within minutes, he had fallen asleep, and I brought him to the bedroom. About two hours later, he awoke and felt quite warm to the touch. This immediately raised my anxiety. You see, with a chemo patient, a slight fever becomes an immediate emergency. With a fever of 100.4 or higher, we have to get him to the ER to receive antibiotics right away. Sure enough, he had a fever and off we went to the ER. Thankfully, Julia was able to stay home with her Aunt, Uncle and cousin. 

After putting Tubey's tail on again and drawing some blood, the doctor contacted Mayo and followed orders of antibiotic administration via Tubey. Because Elliot's blood counts came back normal, we were able to go back home rather than be admitted. We will return again tomorrow to receive another round of antibiotics and await the blood cultures that take 48 hours. If they come back showing bacteria, we will be admitted to the hospital for further treatment. With such great blood counts, this is unlikely.

Thanks again to all who have supported us. We're doing our best to take this journey one day at a time and are leaving the future to God. For those of you who pray, in addition to praying for comfort and healing for Elliot, please pray for Julia as she tries to adapt to this "sick brother thing". Clearly Elliot demands a TON of attention, and she's not sure what to think of it. We're doing our best to give her extra attention when we can, but it's tough. We are grateful to those who have given her some of their time and have taken her under their wing in some way, shape or form (her preschool teachers, Toni, Mr. Howard, Megan, TJ and Jodi, Adrienne, Lyndsey, Lori, and finally, our amazing parents/her grandparents). Your love for her does more for us than anything else you could do for us at this time. Knowing she is feeling loved and important relieves a great deal of stress from Dan and me. Thank you so much!

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

Coming soon...

In order to update all my friends and family in one place, I will be starting this blog! I've never blogged, so bare with me. This post is just a test. More to come once I know it works! :)