You’ll have the opportunity to support St. Baldrick’s funding of clinical trials and directly impact the health and lives of kids (like Chase) who are battling cancer. (plus…hang out with me, of course!)
In this house, in this winter, we’ve completely fallen in love with beanie hats.
Chase has favored them for a couple years as they keep his sensitive head warm and he can use them to cover his ears when he feels over-stimulated. However, this is this first year for non-hat-wearing me…and I am hooked.
My favorite “Smoke Speckled Beanie”
Because I’m hooked, I’m also trying to hook you too. Celebrate cool weather, style, and childhood cancer awareness with a Love Your Melon hat! You guys, for real, 50% of the profits are given to fund research initiatives and provide immediate support to children battling cancer!
Chase post-MRI, sleeping off the anesthesia in a “Navy Speckled Beanie”
Get one for yourself, one for a friend, or request a hat for a child or family member battling cancer today.
This week, the St. Baldrick’s Foundation is sharing an exclusive excerpt of Chase Away Cancer in order to help promote the book and fund research. When you purchase a copy through their official link [here], they’re donating 100% of the proceeds to livesaving cancer research.
I’m so thankful for their advocacy and encouragement to our family and so many others like us. Come on over and read the excerpt! It involves our ambulance hitting a Chicago cab. True story.
Here I’ll get you started…
Despite medical intervention, Chase’s fever continued to rise and his heart rate wouldn’t come down. The doctors came and went, talking to us and then stepping out in the hall to phone Chase’s other doctors and make plans.
Chase himself was in fairly good spirits as he’d been given stickers and a comfortable, soft pair of yellow hospital pants, but monitors don’t lie. His heart rate was staying way too high while the fever hovered around 104.
After repeated sessions of consulting with us and stepping into the hallway to get on the phone with Dr. Lulla and Chase’s team, all the white coats concurred: Chase needed to “go home”…
For the rest of this exclusive book excerpt, click here.
This week was meant to be filled with book launch celebration (and so it shall be too because as you will see here, we need to keep talking about children with cancer), and yet, in an ultimate and awful picture into the heartbreak of pediatric cancer and the broken messiness of life, I come to you with news that defies words.
Chase’s friend Lucas is out of curative options.
Here are some words from his parents…
“With a very heavy heart and tears in our eyes, we must write this post. This morning Mama and Papa Bear, along with his oncology team, sat down to discuss the situation. After a long discussion, it has been decided that there are no further curative options. In simplest terms, there is nothing more we can do to fight this.
We have started palliative chemo to attempt to slow the growth of the tumor. The tumor is wrapped around the pulmonary artery and is pressing on Lucas’ heart.
Right now Lucas is still playing with Legos and video games and yelling at everyone. His breathing is labored and he is swollen.
A palliative/ hospice team will be meeting us at our home tomorrow after we get discharged to work on the next steps.”
Lucas was diagnosed with a rare form of leukemia only about two months after Chase was diagnosed and the boys were often admitted at the same time and would play together in the playroom or race up and down the halls. After year upon year of grueling treatment (leukemia treatments last 2-3 years at best for littles!), Lucas finished only to be readmitted with a tumor in his lungs last July. After months in the PICU, he has barely been home before this, now…another tumor…and on his heart. An endless fight.
Oh my heart…and I hope yours too. For this should not be. Dear ones, please pray for this sweet family. For Lucas’ parents, Anthony and Rina, for Lucas’ older brother, Franco – please pray.
If you’d like a very practical way to minister to this family, Lucas’ birthday is May 7th and his parents have encouraged friends and supporters to send cards. You can show love in this way by mailing cards to: Lucas Bear Heroes, 40 E. Chicago Ave., #162, Chicago, IL. 60611
Chase and Lucas in the oncology ward playroom, Spring 2013
There may be other words, but not today. Today, I stand in silence with this…
This past week, we finally finished up all of Chase’s follow up appointments from his January MRI. I never get tired of seeing him interact with his doctors. This time, he brought his St. Baldrick’s cape (a gift from the staff for his ambassador year) and his new Spider-Man mask. He ran through the halls saying “Zoom! Pow!” until he tired of people talking to him, and then, stripping off his costume, he lurked in the clinic doorway and made silly faces at any doctors or nurses he saw in the hallway. He also tried very hard to tell one of the doctors the new “knock-knock” joke he’d just learned from his kindergarten teacher (“Orange you glad I didn’t say ‘banana’?) and it was something of a fruit basket upset that was pure awesome and complete Chase. Life is never dull, that’s for sure.
Despite the good results of his January MRI, there are several continuing issues. After two years of stability, Chase’s hearing loss has gotten worse. Also, his growth has almost completely fallen off the charts – introducing conversations about the potential need for growth hormones. This is something for which Chase is potentially an excellent candidate, but something that also holds a very real threat of secondary cancers. (deep breath and lots of prayer…)
Before the end of July, Chase needs to do the following:
Have two separate surgeries on both of his eyes to remove treatment-induced cataracts that will leave him with the eyes of a 45-year-old (even after the surgery)
Have an echo to check his heart for chemo damage
Have a bone scan to check the age of his bones (a prerequisite for the growth hormone discussion)
Have a consult with his ENT to determine if he needs surgery to remove his ear tubes (they’ve been in for two years now and are showing signs of wear in his ears)
Possibly have an ear surgery
Have another audiology test to determine if he needs some type of hearing assistance
Have blood work done for at least two of his doctors
Have a full brain/spine MRI
Meet with his neuro-oncology team
Meet with his neurosurgeon
Meet with his endocrinologist
And all of this is in addition to the behavior therapy consultations he needs, the IEP meetings, and the weekly speech, occupational, and physical therapy needs.
What a laundry list. I spent nearly three hours on the phone one morning just setting up appointments and coordinating with hospital staff and dates. Currently, my calendar makes me want to go hide somewhere.
The danger in making a list public is that someone always has a longer and more complicated inventory of things to accomplish. Maybe it’s you. Maybe you’re looking at my “Chase list” and thinking: “Wow, she has no idea…” – and you’d probably be right, but I made this list up and wrote about it for two reasons…well, three, really.
Pray for us. The decisions ahead regarding growth hormone are not to be taken lightly and feel like some of the most weighty things we’ve talked about since the decision to radiate Chase’s brain.
God is faithful. I need to remember this when I look at all the next few months will hold. He’s seen us through this far and He’s not about to stop now.
Hug a cancer survivor. Today, please. This is what “survival” looks like. It’s a weird medical purgatory where you’re not really in treatment, but you’re definitely not out of needing help either. So hug them close and tell them they’re amazing because the battle wounds are real and never quite go away.
Tying it in: Chase’s appointment list reminds me of my life. Too much, too complicated, too crazy… How do I reconcile all the broken? How do I best understand what God wants for me? …for our family? This is the moment by moment nature of it all. I need to lean in; seek Him. Thankfully, He isn’t done with me yet. …with any of us yet. The list is in His hands; life is in His hands.
“And I am certain that God, who began the good work within you, will continue his work until it is finally finished on the day when Christ Jesus returns.” Philippians 1:6
Moment by moment…
{Below: some pictures from our clinic day at the hospital}
Calmly, the super hero makes his way through the metropolis…Chase taking a “selfie” with his Nurse Wendy, our family’s brain tumor coordinator and a part of our heart.Chase and his friend, Matthew, meet up and play “got your nose” in the Crowne Sky Garden after their appointments.
This week, the
