Important Evan Update! April 5, 2022

It’s definitely time for an Evan update. We haven’t updated the blog in quite a while. We have been busy. Life has been very busy, and Evan has been doing great! He has been going to school and is excelling in all his work there. He’s reading well into the first- grade level (he’s in kindergarten).

A month or two ago, he developed a cough and runny nose. He developed a fever on about the third night. Any time he has a fever, it is an automatic admission to the oncology unit to discover the cause and to make sure he is not too neutropenic. After all the cultures and tests were done, we were relieved to find he just had covid. As with the vast majority of covid patients, cancer kids have done extremely well with it. So, he spent a couple nights in the hospital to monitor labs and get empiric antibiotics to cover any secondary infection. Not too long ago, he had a similar situation but was diagnosed with flu A which has been making the rounds. Other than that, Evan’s lab work has been “right through the goal posts”. He remains on the maintenance regimen of daily oral chemo, weekly doses of a second oral chemo drug, every month clinic visits with blood draw, and every three months he gets a lumbar puncture with intrathecal methotrexate followed by IV vincristine.

The big news is that today, Evan had his last lumbar puncture and IT methotrexate! The last one! Final LP! Done with those! This is a huge milestone in Evan’s treatment. The oral chemo continues, the monthly clinic visits continue, the every three month IV chemo continues. But there is a light at the end of the tunnel. Evan’s final day of treatment is scheduled for October 13, 2022. What a day that will be!

We celebrated Evan’s sixth birthday last weekend, but his actual birthday is this Saturday. We will celebrate that day too. His life and this milestone is definitely one to celebrate.

Here are Evan’s statistics as of today:

Diagnosis date: 7/29/2020

Hospital admissions: 6

ED visits: 2

Doses of IV and IT chemo: 62

Days of continuous 24/7 IV chemo (blinatumomab): 56

Blood products: PRBC x 2, Platelets x4, IVIG x 3

Chest port surgically implanted x 1

Bone marrow aspirations: 2

Lumbar Puncture (Spinal tap): 17

Oral thioguanine x 14 days

Mercaptopurine: hundreds of doses

Bactrim: hundreds of doses

Prednisone: hundreds of doses

In light of the above statistics, and to see how he embraces life every day, it is clear why Evan is my hero.

Maybe it doesn’t seem like that big of a deal that today is his last LP since his treatment continues on. But no one will ever understand until you make a child not eat or drink anything after midnight, get up at 0430- 0500 in the morning, leave the comfort of home to go into the darkness and to the hospital to undergo another procedure. Then when you get there, he must face the actual procedure. To be sedated only to taste the medicine and feel sick sometimes during and after. For me, it is always hard to see the anesthesiologist push the IV ketamine and watch as Evan becomes dissociated from reality. It’s just hard to see a normally active kid, your kid, become medically unresponsive. Sometimes his eyes get big and wild with a very brief look of terror as his mind becomes disconnected for a while. It’s all so unnatural, yet routine, and all so scary. He used to have some back discomfort after the LP, but seems to have gotten used to it. But those are behind us! There is a huge sense of relief in Evan and our family. To celebrate today, Evan and I ate breakfast after the procedure at River Diner in Point Place.

Evan has done incredibly well throughout this whole process. We are blessed and highly favored for sure. Still, anything can happen and only God knows what the outcome will be. The doctors continue to make best guesses and predictions based on the science as they know it. But, as believers, we know there are no guarantees in this world. Our guarantee comes from God and His Son, Jesus’ promise of forgiveness at the cross. These terrible diagnoses, these tough journeys that we encounter in this world are attention getters. They either build up your strength or they kill you. They either align your focus on what is important or they push you further into the abyss of the nothingness this earthly realm has to offer. The journey of having a child with cancer is not something I would wish on my worst enemy, yet proud to know we are surviving and thriving through it, with God's divine help.

So, as the world we live in burns with evil, anger, death, crises, deception, hatred, brutality, coldness, bad news, sad news, wars, propaganda, murder, and so much more, we hold fast that God remains in control and nothing surprises Him. I know that before Evan was made in the womb, God knew of his present struggle. Nothing shocks Him, He is never taken off guard. That’s a great reassurance to know that in a time when things are uncertain, we can have a God who was, is, and always will be in control, never wavering never changing, always loving.

The Will Smith thing means nothing. The truth about what’s going on in Ukraine isn’t ours to figure out. Bad things are afoot. We are going to face tragic and uncertain times in America, it won’t be too long. But we must cling to what the Scripture tells us throughout it and in Acts 2: 17… “And it shall come to pass in the last days, says God, That I will pour out of My Spirit on all flesh; Your sons and your daughters shall prophesy, Your young men shall see visions, Your old men shall dream dreams. And on My menservants and on My maidservants I will pour out My Spirit in those days; And they shall prophesy. I will show wonders in heaven above and signs in the earth beneath: Blood and fire and vapor of smoke. The sun shall be turned into darkness, And the moon into blood, Before the coming of the great and awesome day of the Lord. And it shall come to pass That whoever calls on the name of the Lord Shall be saved.”.

God’s Spirit is being poured out onto all flesh as we speak. There is a struggle going on between good and evil. The signs of the times are everywhere. As a believer, I know how it ultimately ends, and I have peace. You can too.