Sunday, August 24 

 

Late afternoon I ran home. (They’re loosening up on isolation quite a bit for Jake and me.) Jake thought a few hours at home would do me good. While Avry is still in isolation, and Trace isn’t allowed to come see her yet, it’s feeling long. Weekends used to be our family time in the hospital, and this weekend I’ve been missing Trace so much. 

 

I came back in by 9 PM. Avry was pretty sleepy today after the stress on her body this morning. Jake and I sat up and talked for a bit. The natural tendency is “arrows in” thinking—what did we do to deserve this? where did we go wrong? But that’s exactly where the devil wants us: focused on how much this hurts us and how unfair it is. How selfish to think this is about us. 

 

When we think of the people from 29 different countries who are invested in Avry’s story and have been inspired, we always come back to this: this has very little to do with us. Yes, we are the vessels God has chosen to use, and we recognize and validate the painful journey. But this isn’t about us. While we don’t understand the meaning, and maybe never will, it was a good reminder to stay the course of choosing positivity and gratitude by shifting our focus to “arrows out.” Not why us, but rather how can we bring Glory to God thro this?

 

Tonight my heart just longs for our family to be all together. The “collateral damage” is Trace—at such a critical age, too. I haven’t talked much about this because there are only “groanings that cannot be uttered.” God, give us wisdom. Keep his heart tender. But also— How do you raise a child when you’re not even present to parent? 

 

Avry is tolerating her feeds so well! We’ve gone up to 20 ml/hr. The goal is 41 ml. 

 

 

 

Monday, August 25 

 

 

Today is a big day! Avry woke up asking for mac and cheese. We tried our go-to foods when she’s ready to start eating again. Goldfish and pretzels have always been the staples, because they usually make her thirsty, which gets her drinking more water. It’s a win-win. But this time, they tasted terrible to her. (Imagine the inside of your mouth being burned and then blistered—I’m guessing it will take a while before she’s ready to eat again.) 

 

This morning we headed back down for sedation. It’s been a while since we’ve been down there! Avry needed a catheter placed pre #2 transplant
To monitor kidney function,  as well as another feeding tube (she vomited this morning and it came right out of her stomach 🙈). I’m not sure why this keeps happening lately when we’ve gone the past six months without it happening at all. She also had to have her dressing changed again. Her skin is so fragile, and our dressings do not stay where they belong. I have never seen such fragile skin in my life—it makes a person shudder. This poor baby girl. 

 

Sedation was a pill. She knew what was coming. She knew we’d be separated. There was no amount of calming that would soothe her. Even Anna being there didn’t faze her. The anesthesiologist walked in—so happy to see Avry—but Avry was not happy to see him. I held her while they put her to sleep, then transferred her to the bed and quickly left the room. How did I do this over 20 times? Watching them put your child to sleep is not easy. It’s unnatural, creepy, and shatters a mother’s heart into a million little pieces. And yet—you can’t fall apart every single time. You brace yourself and hold it together. again. 

 

I ran upstairs because I was so hungry and knew this was my 35-minute window to shower and grab something to eat. Meg joined me for lunch and carried a bunch of stuff out of the car—may as well send as much home as we can! 

 

Avry came out of anesthesia well. She was crying for me, but not aggressive or upset. It was a lighter sedation, and she wasn’t as disoriented. The afternoon dragged on, and when she fully woke up, she was so angry about the catheter. Anna told her, “You may scream. You have every right to scream at the catheter.” It’s such a massive tube, with a big Band-Aid on the side of her leg to hold it in place. Avry is very protective and careful with her tubies, but she was not happy about this one. 

 And tonight is baseball tryouts—Trace is so excited for fall ball. 

 

Tuesday, August 26 

 

 

Today is Trace’s first day of 4th grade! I clearly remember my own first day of 4th grade. Dawn sent me pictures of his morning, and oh, it pulled so hard not to be there. How was it only a year ago that Avry packed her little backpack and was determined to go to school with Trace on the first day? She didn’t want to leave his side, holding his hand tightly as they walked into school. 

 

It takes intentional breathing to process the life changes—and strong mental energy to override the gag reflex as the heaviness wants to sit in my stomach like a pound of cement. 

 

Avry slept until 10! She had a very good night, mostly sleeping through her meds and vitals. I, however, am still on the two-hour schedule. It feels weird to me to sleep in so late while everyone else is awake and coming into our room, but most of them have had a full night’s rest. For me, solid sleep doesn’t even start until around 4 AM, after labs are drawn—then we’re left alone for a while. 

 

She’s been sleeping on and off most of the day—pretty sure it’s her healing sleep. So I’ve been packing up the room as much as I can. 

 

Trace called me after school, so excited! He’s convinced this will be the best year. What a great thought. He told me everything about his day and how much he loves 4th grade. Hearing his happy innocence made the morning’s separation fade. 

 

They removed Avry’s catheter this afternoon, but if she doesn’t pee by midnight, they’ll do a bladder scan. 😰 

 

The social worker and Dr. Cohn came in, and it was not a fun meeting. It was a recap of the last couple of weeks, discussing the Anne situation from early on. The last thing I want is to be “that family.” But the truth is, we did our part to prepare, and they didn’t do theirs when it came to isolation and infection control and the things they promised would be in place. What matters is that we got through it, and Avry is doing well. We know what to expect for round two. We understand that we’re the first transplant here, but still—effective communication goes a long way, and it was not a priority among the multiple teams consulting. It left us very lost and confused. I really don’t want to ever see Anne again. Even if you don’t actually care about my child, at least pretend to when you’re delivering 24 pages of protocols that strip away almost every ounce of freedom except the right to breathe. 

 

Wednesday, August 27 

 

 

It was midnight when we woke Avry up for the bladder scan. Ugh. Her temperature was climbing, but she didn’t have a fever. Her heart rate had been high for the past two days, so finally they gave her Lasix and blood, and that was exactly what her body needed. 

Early morning, she vomited again and up, came her feeding tube. AGAIN. 

And she had another nosebleed. She is absolutely terrified of them after the traumatizing one on Sunday. 

 

We slept in again this morning. When she woke up, she wanted to get into her princess dress. I kept packing more thoroughly. 

 

Max was our nurse today. She was the one who started us on high-dose chemo, the one who administered transplant, and now the one who gets to discharge us! (She was also the one who discharged us after the very first admission back at diagnosis and round one.) She has seen it all, and we appreciate her so much. 

 

The doctor came in and told us—we’re going home! We are so excited. Honestly, I can’t believe it. We’re still two and a half weeks ahead of schedule. At the very beginning, the oncology team told us to expect about seven days in the hospital per month. That turned into an average of 21 days a month for the past five months. Avry got hit so hard and has been in unusually long. But then they told us to expect more than two weeks in the hospital after surgery, and we were there six days. “Miracles on miracles—a million little miracles….”

 

Avry wasn’t feeling well today, and I really didn’t want to be back here within 24 hours. Twice we’ve been sent home early only to come right back, and that’s harder than just staying longer. Still, she so badly wanted to go home. She was ready hours before discharge (in her mind, when they say you can go home, that means right now). But in the hospital world, it can mean after a shift change, a lunch break, a staff meeting, a fire drill, three French hens, two turtle doves, and a partridge in a pear tree!! In this case, it was waiting on platelets—again. 

 

Eventually, I convinced her to nap. Three and a half hours later, it was finally time to load up. Jake took a load to the car, then came back and said, “Our crew is waiting!” 

 

Max had us all ready, and wow—the doctors, nurses, and consulting teams lined the hall with pom-poms and a bubble shower parade . It was the most bittersweet exit we’ve ever made. Avry had her mask on and wasn’t feeling well, but until we got to the end of the hall, she had a big smile on her face with little tears streaming down. There are no words—just hugs and tears. We made it through transplant #1, and we couldn’t have done it without these incredible heroes who lined the hall today!!!!

 

Avry desperately wanted to go pick up Trace from school, but we knew we wouldn’t make it. Besides, she was beyond exhausted and fell asleep as soon as we got in the car. 

 

As soon as we got home, though, she was wide awake and begging to bake the Christmas cookies she’s been dreaming about for the past week and a half. 

 

Who in their right mind comes home from a month in the hospital and bakes Christmas cookies before unpacking a single bag? A cancer mom. The one hanging by a thread, bone-weary, longing to collapse in her bed with a side of the months tears shed been stuffing down —but willing to do anything to see her child smiling, engaging, tasting, and laughing. So that’s what we did. I had made sure the ingredients were ready the day before. We baked cutout cookies, taking golf cart rides in between steps. 

 

Avry was worried they wouldn’t taste good. She asked over and over if they’d be yucky like everything else. Poor thing—she’s tried every food in the house, and nothing tastes good. She’s so tired of trying, but still hungry. (Thankfully, she’s getting nutrition through her feeding tube.) 

 

Trace came home from school while the dough was in the fridge, and this little family of four jumped on the golf cart! I wish I could explain to you how much This means! You know the feeling at Christmas when you get together with people that you haven’t seen in a really long time and your circle is finally complete and you get this feeling in your chest that feels like you could laugh and cry at the same time because you’re so incredibly happy and nothing else in the world could make you feel This perfectly whole and complete??? Like you could be living in a shack and have holes in your shoes (or not know if this is the last day that you have with your baby girl) but this feeling in these few moments Trumps  every other-and for just a few moments you let go of stage 4, high risk pediatric CANCER.

 

We went back into the house and Trace and Avry had fun rolling out the dough and cutting out shapes. It didn’t take long to quickly bake them. They cooled over suppertime. Meg had a lovely home-cooked spread for us. After supper, Avry and I iced and sprinkled the cookies. She was so scared to actually bite into one-because what if it also tastes yucky?!  SHe took a little convincing, but she took one bite.

And looked at me as if  asking permission for it to taste good! Then she went for the second bite!! And smiled so big! She took two whole bites and kept it down!!!!  

The memories flooded my mind of just last December with the same recipe at our little White House- it feels like yesterday that we decided to make Christmas cookies at 5 pm because we’re waiting on Jake to come home from work late- and it was something to pass the time.  The amount of joy that evening in early December… I will never take for granted the way we soaked up each other’s presence and sass and the amount of icing and sprinkles that were everywhere else but the cookies! Today the Energy is 100% different than it was in December. I thought we knew intentional, and I thought we knew how to savor moments—-but childhood cancer teaches in a very distinct format. One that forever changes you. 

We cleaned up the mess and went to bed  a very happy family of 4!  (did I mention I get to sleep with my husband tonight?? You might be squirming, and you might think it’s the weirdest thing in the world. — I don’t know how we went five months like this. Actually, I do. In the name of “practicality.”  no but for real. 😳 we have missed each other and I want to remember this part and how hard it’s been to find time to connect and how we finally gave in for the sake of our marriage because if we’re not OK, the kids will never be OK!) 

—To be continued