I Can See Clearly Now

The pain is gone. ♫

I can see all LEGOs for my build. ♫

Gone is the chemo that had me blind. ♫

Thank you all for your prayers this week. Jennings’s eyes are back to (almost) normal. The morning after my last blog post they cleared up. That’s one of the “cool” parts of living this life…we are afforded many opportunities to see the power of prayer. To see the incredible impact of multitudes of people praying the same prayer. It is truly moving.

Jennings went to clinic that morning still in pain and discomfort, but after one dose of morphine, and thousands of prayers from all of you, the pain subsided and has not returned.

We are now in the doldrums of count watching…the rapid drop to zero, then the slow waiting game as they start to recover over the next couple of weeks. His ANC officially hit zero yesterday and he’ll get his first transfusions of this round tomorrow. He’ll need blood and platelets. Probably could have used both today, but St. Jude is generally a little more conservative on when they transfuse…so a long Saturday in the Medicine Room it is. He seems unaffected by the low hemoglobin, so no harm in waiting there. I am constantly amazed at his energy level in the midst of this. Most people, with hemoglobin as low as his today, would be in and out of naps all day, unable to peel themselves off the couch. Not J, he’s been asking all day what we’re doing after school is over. Platelet-wise we’ll have to be a little more cautious.😬

Dr. Rubnitz is hopeful that his counts will recover a little quicker than most patients given that he came into this round with great counts and low disease. This could mean his next bone marrow aspirate could be towards the end of the first week of February. During that same timeframe, he will be going through the pre-transplant work-up. Every kind of medical test, question, examination you can think of, he will have it. MRI, CT, bone density, physical therapy, eye exam, dental exam, on and on. This is to establish, or in his case re-establish, a health baseline before the transplant.

As of now, we have a tentative date of 2/17 for him to be admitted to the BMT floor which would put the actual transplant day right around the end of February.

So now, we pass the time. Try to enjoy the togetherness amidst the separation. Lauren is back in Charlotte for the weekend giving Caroline, Henry, and Charlotte some much needed mommy love….and trying to convince them all that I still exist outside of a screen.

Our go-to activity, when not stealing hats and taking silly pictures in the cafeteria, has been the Putt Putt Golf n Games. It’s fun (for both of us), it’s deserted during the weekdays, it’s outside, and it’s COVID / neutropenic-safe for the most part. We hit balls on the range, which has a Topgolf like tracer screen at each bay (way more advanced than the feel you get driving up to the place) and then we can play free putt-putt courtesy of the St. Jude activity discount. Halfway through putt-putt it usually turns into “dance golf” and his favorite part is the 18th hole that whisks the ball away underground. We’ve been four times already.

One late afternoon, we busted out the Nerf guns and after shooting darts over the house from side-to-side, we plotted a sneak attack on Lauren. She was going to take a bath, so we snuck in the bathroom and set our “trap” - mini dinosaurs in the tub, concealed by the bubbles. Then, we took up our positions flanking the hallway to bathroom and waited for what seemed like 10 minutes for the water to get sufficiently scalding hot. That’s the only temperature for a bath as far as L is concerned. When she finally went in, we snuck to the door and loaded our guns…only to be thwarted by a locked door! We never lock the doors, dang-it. She must have heard us conspiring, but she did not escape the trap.

The awesome generosity of others has been a tremendous help in passing the time while having fun and making memories. We returned home to this after putt-putt yesterday:

To everyone who sent something, thank you from the bottom of our hearts. To a 5-year-old, separated from his siblings and isolated from most of the world, opening a package brings so much joy. He may be deprived of a normal kid-life, but he does not have to be deprived of happiness and you all have made sure that he’s not.

Before Lauren left, we got a date night in at a casual burger bar not far from the house. Miss Cathleen came to play with Jennings so we could sneak out for a bit. We had such great, deep conversation…over gourmet queso fries of all things. It was great to connect. We marveled at how God has kept us through these trials. We shared our doubts and fears, of which we have plenty, but yet neither of us has been broken by them to the point of denying God’s existence and truth. We acknowledged the elephant that is always in the room these days and we talked about it out loud: is God slowly preparing us to be bereaved parents? We both encouraged each other not to give up praying for his miracle. We reflected on the hard we’ve known and currently live in; at times it seems like a lot, especially for our age. We reminisce about times past before we knew true suffering and how little we had to talk about then, or how frivolous conversations could be. I remember a trip the two of us took the summer before Jennings got sick. I remember being at dinner and seemingly running out of things to talk about. What a distant memory that is. In many ways, I am glad that is a distant memory. We are deeply connected now and recognize, much better than we did, the gifts God has bestowed on us. We praise him for that, especially the connection. Many marriages in the vice of pediatric cancer are torn apart, and understandably so. By the grace of God, ours has been refined, if not forged, in the crucible of these years.

“Therefore a man shall leave his father and his mother and hold fast to his wife, and they shall become one flesh.” Gen 2:24

We are holding fast to each and to the promises of our Lord and Savior Jesus.

#allinforjennings