June 19, 2021 ... What a day! 

It's been a while since I wrote an entry.  And that is generally good news.  Charles' treatment has been going relatively smoothly.  We did follow doctors' recommendations to lessen his chemo - going in every three months, as opposed to every month, for a lumbar puncture to administer methotrexate (a type of chemo), vincristine (another chemo) via his port, and steroids.  What a difference that made!!  Having five days of steroids every month typically meant that he hardly had time to get back to his old self before going right back in.  A longer break allowed him time to feel like himself again, and the effects of the steroids hasn't seemed quite as bad.

We also added a fourth to our crew, Leo, born in February of last year.  Throw COVID into the mix and having all four kids home more, it's been hard to sit down at a computer!  Charles was hospitalized once more, in March of 2020, soon after Leo's arrival and right as COVID officially made its way to the Denver area - he was actually still admitted when the first case was reported and they changed hospital procedures.  Those included the "no sibling rule", meaning Kevin had to watch the girls (babies are allowed in) during his appointments, and a requirement that he take a COVID test prior to all of his lumbar punctures.  Thankfully COVID has not affected the oncology kids more harshly than others.  And since Charles has been staying strong with his counts on the upper limit, we ultimately decided to send him back to in-person school.  The upside to COVID precautions is that we never had to go to the ER over the past school year!  He stayed home with a runny nose and cough a few times, but no fevers (a fever over 101/lasting fever over 100 requires a visit to the hospital)!   

Back to today.  Today not only marks the three-year mark from Charles’ official B-Cell Acute Lymphoblastic Leukemia diagnosis, but doctors removed his port and he had his last lumbar puncture yesterday. 

A port is a small device that was implanted under Charles’ skin on the upper left side of his chest when he was first diagnosed.  It was used to easily access his bloodstream to draw blood and infuse chemotherapy over the past three years. 

It also was his last lumbar puncture (LP).  Charles has had chemo injected into his spinal fluid throughout his treatment, so it’s amazing that this was the last LP!  Since it is his last LP and the last time vincristine (a type of chemo) needed to be injected through his port, his doctors said that they could remove his port at the same time.  Removing the port reduces the risk of infection.  He’ll continue with oral chemo until August 24, when the real celebration will take place.

Charles seemed pretty pumped; saying “by tomorrow afternoon, I won’t have a port!”, “when I come back, I won’t have my port!”.  The same wasn’t true a few months ago, when he first learned they’d be taking it out in June.  He doesn’t remember not having a port.  Not having leukemia.  It’s such a part of his identity and, I think, the realization that his treatment was coming to an end was a bit of a shock. 

It’s understandable.  It is something that has set him apart; he’s raised money for leukemia, participated in light the night, talked to his class about his diagnosis and treatment every year.  It’s part of him.  We talked about the fact that he always will be a cancer survivor, and that he can continue to talk about leukemia, raise money for LLS, and help others going through what he went through.  He now seems to accept and celebrate the end of this chapter of his life.

We are so glad to know that in a couple of months, he won’t be ingesting such harsh drugs on a daily basis.  They are life-saving drugs, and we are eternally grateful to live in a time where Charles can benefit from chemotherapy, but his little body has gone through a lot and it’ll be nice to get him off medication.

To celebrate, Charles requested Pizzeria Locale (to order his own as they make individual pizzas), with a movie of his choice (Luca).  That was after his customary post-op cookie; I always picked up a cookie from the hospital coffee shop for him to have when he woke up after his lumbar procedure.  Since Kevin was able to join, he ended up with three cookies yesterday ... And tonight, steaks!  The boy likes to eat, especially while on steroids.  (This also marks the last time he'll take steroids during his treatment. Yay!)

We are so thankful that my mom came in town to watch the other three kids and celebrate with us.  Her help has been invaluable throughout this journey.  

It is a good day! 

Thank you for your support throughout this journey.  We'll check back in at the end of treatment in August!