We’ve made it to Day 29 and Ava’s BMA. While we won’t find out the results today is it a big day. Based on what today’s BMA and spinal time find we will know if the CAR-T cells were able to destroy her leukemia cells or if they were able to change their genetics and avoid the CAR-T cells.
If her CAR-T cells were victorious we will finally hear the words minimal residual disease negative (MRD-), the words we’ve been praying for since July 12th. If they weren’t we move onto a bone marrow transplant, BMT. There’s also a chance that she could be MRD-, but the B-cells return to quickly and we would still go on to transplant, so we’re praying for MRD- negative AND B-cell aplasia for at least 6 months if not longer.
Late last week we learned that surprisingly neither Kohen or Ellie are a match to be donors for Ava. This means that if a transplant is ever needed Kevin will most likely be her donor. I will be tested as well, but for some reason I cannot remember Hopkins prefers that fathers be the donor when it’s a 50% match. Since they are the pioneers in hapaloidentical transplants we feel we’re in good hands and trust their judgement.
However, this is a conversation I hope we never need to have.
For today I’ll take comfort in knowing she’s made it through anesthesia, a bone marrow aspiration, and lumbar puncture successfully. I give thanks that she’s looking and feeling so good. When the worry stats to try and set in I’ll remind myself that the Lord has already answered my prayers according to His will. I’ll try my very best to give thanks and not question.
Ever since we came home from her CAR-T infusion Ava has been sleeping in her own room. Sometimes she moves to the couch in our sitting room, but most mornings Kevin will tap her to move to our bed once he leaves. On the rare occasion that he forgets she asks me to remind him for the following morning. It’s moments like this that remind me she’s still a kid and she still needs me, even if it’s just for little things.
Throughout this journey she has been so brave, so composed, and so mature. There have been only a handful of moments she’s shown fear or doubt. This post isn’t to brag about how she’s handled all of this, but more to express my wonder of how she’s done it.
This is not to say that there haven’t been tears, she’s human so of course there have. I’ll never forget all the fear she’s had over doing LPs with out sedation. The pain she was in while those happen and the time she fell asleep crying from the pain after one. Or the day we told her she wouldn’t be home for Christmas. I don’t think I’ve ever seen her cry so hard or so much. Maybe it’s just me, but I don’t consider crying a weakness. To me it’s a coping mechanism that allows you to keep going.
My wonder is more about the lack of fear in what leukemia could mean in her life. As much as I’ve tried to keep my worry in check it still happens. Throughout this process I’ve really worked on turning my worries into prayers. My go to is praying a Hail Mary or giving thanks for an answered prayer whenever my mind wanders. Sometimes it works sometimes it doesn’t. Sometimes the anxiety gets so bad I have to talk to someone. My first person is Kevin. Though he always makes room for my fears and validates then he also always reminds me worrying won’t change the outcome and quickly moves on. This leaves me to reach out my mom, a friend, or a fellow cancer mom to talk through it all with. I don’t know how I’d do it without these amazing people to walk me back. That’s where my wonder of Ava comes in. She never needs to talk to through the worry of the future, the what if’s, the tailspins.
We’ve been on this journey for six months now and the question I seem to always ask myself is how? How does she do it? How did this 14 year old who was dealt such a crappy hand learn to be so confident? How does she deal with the fear of a procedure without needing to lean on anyone?
Last week when Dr. Molina called to give us the results of her CD19 blood smear I was upstairs with Ellie and she was watching a movie with Kevin downstairs. I ran to the stairs and said “Dr. Molina called, Ava’s got no B-cells!” Later that night she mentioned in that second between Dr. Molina called and Ava’s got no B-cells and panicked and worried something was wrong. That my friends is the only crack I’ve ever seen in her armor. Besides that she’s always told me and been confident that she’s going to beat leukemia. If she has doubts she keeps them all to herself.
On one night in early January she asked me to lay with her until she fell asleep. I told her I would pray the rosary while I waited. Shortly after I finished she asked me, Mom do you think I’ll have a husband? I told her I didn’t know. She’s always been so independent and spoken of not wanting one so I didn’t want make her feel she needed one. Her question made me realize that she’s planning her future. Another evening she was crying because she was getting a c in geometry and was sure she wouldn’t get into medical school with a c in math. I had to laugh. Really? All that you’re going through and your biggest worry is a c in math?
Yesterday we went to Harris Teeter for some dinner supplies and she saw someone she knew from school. As we were walking out she said “Great, she saw me.” I asked who and why it mattered. She told me that the girl was not a nice girl and it’s because of girls like her that she won’t return to school this year. Several times she’s told Kev and me that she won’t go back until her hair is fully grown in because she doesn’t want to be made fun of. She doesn’t want to be bullied by other kids. This blows me. How is that she’s been through all this difficult stuff, endured so much pain, but is scared of what other kids may think?
There’s so much I don’t understand about my girl. Perhaps, she will always be a mystery to me. What I do know is that she was perfectly made for this life. For that I can’t thank God enough.
Ava’s fellow called shortly before 8 to tell us that based on labs she had Friday she has no detectable B Cells. This means the CAR-T cells are doing their job. While we won’t know if she’s MRD- until after her bone marrow aspiration next week, we do know at the moment she has no B cells. Some of you may remember she was diagnosed with B Cell ALL. Remember that thrill of hope?
Since she has B-Cell Aplasia she will be getting monthly IVIg treatments to help her body fight infection. This may not sound ideal, but we want the B cells to stay away as long as possible. So please friends keep praying.
On the scheduled for today is a lumbar puncture to check and see if she’s got leukemia in her spinal fluid. She’s also getting an bone marrow aspiration to check her current burden of disease. Finally she’s getting a PICC line placed so that the infusion and any rescue meds can be administered more effectively. Besides that she will just be chillin and recovering from the procedures.
We were told there was a chance the PICC wouldn’t be placed in the OR and might be done bedside. Becky our nurse told us it would be better if she didn’t go first thing as there was a great chance it would be bedside verses in the OR. So I went to bed knowing it would be an early morning, but prayed it would be too early.
Around 8 this morning our nurses Cailey and Jennifer came in to tell us it was time to get ready to go. They said that the PICC nurse would be up shortly to have consents signed. Huge sigh relief.
They took her back around 9:40 and just finished up around 11:40. While we were waiting my friend Tina, from Rock View came to hang with Kevin and me. She brought up a goodie basket from my friends at Rock View and helped pass the time. It was a nice distraction to have someone different to talk to while we waited. We’re also lucky our friend Kristen was able to bring Ellie up to for visit for a little while. Of all the kids she definitely misses having us at home the most.
When the PICC nurse came out she told us that they had some trouble placing the PICC in her left arm as planned because as they made it towards her shoulder there was some kind of obstruction that wouldn’t allow the line to pass. They’re not sure if it’s a blood clot or scar tissue. They don’t seem very concerned since she’s still on Lovenox and they were able to get the PICC through the right arm. About half an hour later Dr. Dunkin and Dr. Rabach came out to let us know that her spinal fluid was clear and the bone marrow came out nice and bubbly. Hopefully these are good signs that she still has a low burden of disease.
Our plan for the rest of the day is to spend some time with Ellie and keep AJ comfortable. I’ll try and write a post tonight about what we expect with tomorrow’s CAR-T infusion and all the things we’ll be on the lookout for over the next ten days.
Thanks for all the prayers. Please keep them coming.
Yesterday while scrolling Insta I read this quote by Michelle Obama- “Don’t ever make decisions based on fear. Make decisions based on hope and possibility. Make decisions based on what should happen, not what shouldn’t.” It stayed with me because I think it really puts some action behind the thrill of hope I’ve been trying to focus on.
During rounds this yesterday I told the team how we have a tradition of all being together for New Years Eve, but I didn’t know if it was a good idea to have Kohen and Ellie come down and meet us. Dr. Bonifant assured me that we could make those plans and if anything unexpected occurred it we could always adjust. I was still hesitant to say anything to a Kohen and Ellie because it seems each time I’ve told them they could come visit something comes up and we can’t get them up here. I’d hate to let them down again. I think our biggest hesitation is that they’ll be bored hanging in the hospital with us. Then there’s the fact that days 7-10 could bring the strongest CRS reaction. So Kevin and I continued our wait and see approach.
Yesterday was a pretty quiet day. When you’re in the hospital over a week the days start to blend together. The only reason I know what day of the week it is, is because on weekdays AJ and I pretty much hang on our own while Kevin teleworks. Since yesterday was Sunday we had him with us most of the day, it was nice. Sometimes being Ava’s only entertainment and playmate gets a little exhausting, especially with all her new found energy. The down side to having Kevin with us is that he keeps us much closer to 11S. He’s more hesitant to let her roam the hospital and she’s even more wound up. I normally check with her doctors to see where she can go. He checks with the nurses. Our favorite daytime nurse is way more conservative with her leash. She has yet to have any noticeable reaction to the CAR-T so the doctors are like go have fun. Her nurse is like ummm ya I’m not sure. Even though Kevin and I are so happy she’s remained symptom free, she plain bored so I say let’s go, he says be bored it better than the PICU. She said her best feeling of the day was finally winning a game of Tonk.
Last night Trevor came to visit. He’s so good with kids and teens. He was able to help her have some fun on a yucky Sunday. I’m equally thankful he was able to bring me a new air mattress! Ava was having too much fun bouncing on it and I found myself sleeping in a pit on Saturday night. My new mattress is nicer and firm so my back is also happy Trevor stopped by.
Today was day 7 and it brought pretty much the same old, same old. As usual are days are filled with endless games of Tonk, easy roller rides around the unit, and a couple visits downstairs. Our biggest adventure today was going down to the 3rd floor library to print some paperwork. This afternoon one of AJ’s IIS teacher came to visit. It was so sweet of her to come all this way and reminded me that MCPS teachers are amazing. She brought with her some yummy cookies that we all enjoyed.
During dinner Kev and I chatted what we wanted to do tomorrow. We decided to go ahead a plan with hope in mind and told the kids to pack their suitcases so they could come stay in Baltimore with us till Friday. I won’t lie and say that little don’t jinx it voice isn’t still there, but I keep telling it to shut up. I keep reminding myself to focus on the reality of the moment and to live that. Our current reality is that AJ feels great. She’s strong, she’s energized, and she’s lonely. She longs for her brother and sister to be around so she can hang out with them. Our other reality is that I have a sweet little girl at home who’s dying to spend sometime with us. Even my PlayStation addict is missing us and would welcome sometime with his sisters and parents. So starting tomorrow our family of five will all be in Baltimore. Unfortunately my mom won’t be able to join us, but I’m sure she could use some kid free time.
The whole team here was been very confident that AJ will get discharged on Thursday. The all the nurses who’ve worked with us and the doctors on rounds have mentioned how barring any flukes we should be out of here on the 2nd. We’ll most likely stay at the Ronald McDonald House on Thursday night so we can come back for Ava’s day 11 labs on Friday. After that we all hope to head home to my mom, Wesley, and Lulu.
This is how it’s supposed to be. This is what I’m using to make our plans. I know it may not happen, but as Hallmark reminded me I need to be warrior not worrier.
Happy Sunday everyone! Just wanted to post a quick update before we head to mass.
Ava continues to do well after getting home on Thursday. She had a follow up appointment on Friday and her counts all looked good. Kevin, Kohen, and Ellie also had blood drawn on Friday to determine if any of them could be potential bone marrow donors. Even though we all hope and pray that CAR-T will do the trick and get Ava to MRD negative and that the CAR-T cells will stick around for at least a year, we need to be prepare in case they don’t. Thus why we’re getting tested to see who would be her donor.
Oh Friday I asked Dr. Molina if he felt confident that CAR-T was working and would do the job and after a slight hesitation he said yes. I understand why doctors can’t give guarantees, but I wish they would. He mentioned how one reason they like to see a little CRS is to reassure themselves that it’s working, but with Ava’s low burden of disease they just had to trust the process. I asked if he meant we had to have faith and he said yes he guessed that’s what it meant. Well, that we can do. Though we’re still learning to walk by faith and leaning in God more each day, I find comfort in knowing dependence in Him is needed.
So for the next few weeks we will be leaning heavily and continuously praying for God’s will to be done. We’ll also be living life with the faith that she is cancer free. Recently I realized that my greatest sign is HER. She’s happy, she’s strong, and she’s ready for what comes her way!
Quick reminder you can follow me on Instagram @Racey7 for more pics and posts.
Sitting here on Day 5 of my CAR-T Party. Today I learned how to play Tonk. I went outside for the first time since December 19th. I had a visit from my best friend. Her name is Alyssa and we always have so much fun and laugh a lot together. When she had to go home it made me so sad. Then I had a hotdog from Sonic for dinner. I realized I need two hot dogs to get full. I still hungry because I’m a fatty patty. Ikeep asking to do hand stands on my Mom’s air mattress, but mommy and daddy keep telling me no. Even fake crying doesn’t work.
I’m feeling really good. Today I didn’t even take a nap. I still wish the other kids on the floor would come out of their rooms and play or hangout. I’m lucky I have my mom, dad and visitors to play cards and games with. I’ve been having fun doing my nails with color street strips and riding the new xl easy roller. Mom might even get me one of very own.
Tomorrow is day six and if I keep feeling this well I may get to go home to my Wesley on Thursday. I love my puppy and really miss him. But I wouldn’t mind staying at the Ronald McDonald House one day, because it looks really nice.
I hope everyone had an amazing Butt Cheek Christmas like I did. Thanks for always thinking and praying for me. I’m sure my mom will post again soon.
This morning we had AJ’s CAR-T Christmas Eve Party. Her infusion took place around 10:20 and lasted maybe 5-10 minutes. After that it felt like she had a battery plugged in and she was on the go. My cousin Irasema arrived around 11. She brought us a yummy breakfast to share with the nurses and also helped us entertain Ava. Ava had a great time showing her how she easy rolls around the unit and took her for a tour of the hospital. She took Ira to see the Jesus statue, get ice cream, and introduced her to all her nurses. During this time AJ also got to join in on some caroling that was happening on the unit. Then she taught her how to use the Oculus Quest. It’s definitely Ava’s favorite gift and she loves showing everyone how to use it. Once again thank you Santas.
After my cousin left we met with the transplant team to discuss what we needed to do if the CAR-T cells aren’t in her body long enough. I wasn’t too happy to having this discussion only a couple hours after getting the CAR-T cells. If I’m being 100% honest it kind of felt like the devil was just trying to tempt me and shake my faith. I even told the doctors this. Of course I tried to be respectful and understand they’re just doing their job, but yuck. Really? Anyway— We agreed we take a monitor and wait approach.
After speaking to the transplant team my sister and brother in law arrived. AJ dragged them out to easy roll and taught them to use the Oculus Quest as well. While we were out on the unit zooming AJ around on the easy roller, or as she calls it the easy rider, because duh she rides it, Casey came in to decorate her room. After a few games of spit, some crazy 8s, and present opening Ash and Bryan left. I’m hoping they take time to celebrate Bryan’s birthday, but am sad as it’s the first year in 30 I’m not with my sister at midnight.
Shortly before my sister left my mom arrived with Kohen and Ellie. While my mom and Kev ran over to the Ronald McDonald House to get her and the kids checked in for the night I got to spend some time with my terror squad. The nurses and fellow patients got to see what my crew is like. Ellie wanted to ride around on the easy roller, Ava wanted to be pushed around on a chair, and Ko just wanted time time with the VR headset. It’s just the kind of crazy chaos I love, but can only take so much of. 😉
After a few laps around the unit I was able to get them all in the room and calmed down just in time for Ava to visit with Dr. Patel and get her bandages from yesterday’s procedures taken off. As soon as she was done with that her cousins, and my cousins showed up. This and the arrival of her siblings is what she’d been waiting for all day. As soon as she saw her baby cousin Marco she smiled and said my babies are here, I’ve missed them so much! In case I haven’t made it clear my girl loves the babies. She was so excited to spend time with Matthew, Melanie, Amaya, and Marco. She couldn’t wait to show them the easy roller and her headset. Once we finally convinced her to settle down and eat some dinner she was only able to take a couple bites before her head started to ache.
I felt terrible for her. A couple weeks ago Gold in Fight and Crossroads Bistro sent out the menu options to Gold Families and Ava took such care in picking out the menu. She’d been especially looking forward to lasagna and didn’t have much. Once her headache hit she had to come back to her room and lay down. The nurses and night resident read over her trial protocol to see if she could be given Tylenol. All the while she just wanted to go back to be with our family. Once she was given Tylenol and hooked up to the monitors she was told she’d have to wait about 30 minutes before she could be unhooked and possibly rejoin the party. My sweet girl kept sending her brother and me to “entertain the cousins and make sure they didn’t leave.” Finally we decided they could come in in shifts and spend time with her before heading home. Unfortunately, her headache didn’t improve before bed and we had to have my mom and the kids leave for the RMH earlier than we’d wanted.
So here we are 10:30 on Christmas Eve. One of my lovies is not feeling the best and already asleep. My other two are five blocks away with my mom. I’m laying on an air mattress, stewing over how the doctors stole some of our hope with their talk of bone marrow transplants. I’m equally pleading and praying that this will truly be our best Christmas ever and that doubt doesn’t win or take up place in my heart. I need that hope I had going into today to return and ease me to sleep.
That’s all we keep hearing from the nurses and doctors. Tomorrow is Day 0 and officially CAR-T day. Here’s what we know so far.
Ava should get her infusion in the morning. Kevin says it’s about 17 ml of CAR-T cells. They come packaged in dry ice and the opening is supposed to look very cool. Kev is excited to get video of it. The infusion should run over 20-30 minutes. We have asked a hospital chaplain to bless the cells beforehand, and I’m praying they can make it happen. She will have labs and vitals done before the cells are infused, 15 minutes into the infusion, and then multiple times after.
Somewhere around 24 hours after the infusion AJ may begin to feel yucky. Then again she may not. This is the confusing and frustrating part. Since CAR-T is still so new and she is only the fourth kid getting it this early in treatment and with such a low burden of disease no one knows exactly what to expect. Most people who’ve had this done want a very strong reaction as proof that the CAR-T cells are destroying the B cells. We were told to imagine the worst flu you’ve ever had, high fevers, body aches, confusion, and such. That’s what patients who have a high burden of disease expect. Some people who get CAR-T have like 90-95% disease burden. At last check Ava had .34%. We don’t know today’s results yet, but it will be a good indicator of what to expect. Her doctor’s have told us that she may not have any reactions or only slight reactions. They’ve told us not to panic or worry that it’s not working. They keep coming back to, she’s got such little leukemia left it shouldn’t be much of a reaction.
Then there are her nurses who have tried to prepare us for the 106°, possibility of seizures, and body aches. They’ve encouraged her to get out of the room today. They keep saying she will be in the room room and feeling crummy. When they mentioned or cautioned of high fevers Ava let out a snort and laughed as if to say fevers? No problem I’ve done that before. I’m all to familiar with those. It’s like they’re playing bad cop. Maybe realistic cop is a better term. Either way they always follow it up with, but we haven’t seen kids with her level disease before so may not.
Another thing her nurses have brought up is how AJ’s BP naturally trends lower. If I’m not mistaken at one point yesterday it was 70 something over 30 something. The nurses assured me they brought it up to the team and that everyone will be sure to keep a close eye on it. Typically they give meds to kids whose BP is so low after CAR-T. Those meds can impede the effectiveness of the CAR-T cells. However she runs so low most days they will have to set new guidelines of when to intervene so they don’t do it too early. This is probably what has me most on edge. It gives me PICU flashback and I get so nervous. I’d love to avoid a trip to the PICU. Yesterday I listened to a TedTalk with Dr. June, the developer of CAR-T and he said the first child to get CAR-T was in the PICU for 20 something days. It was scary to listen to. But she’s healed and still leukemia free six years later.
So yes I am excited for tomorrow, we all are, but I’m also scared. Scared of a strong response, scared of the PICU, and scared of no response as well. But I still come back to that thrill of hope. I come back to that and to knowledge that no matter what, God will give us exactly what we need to get our girl healthy and leukemia free. The doctors and the nurses may not know exactly how AJ’s body will respond, but He does. And thankfully He’s exactly who I trust with my sweet Ava.
I may be dating myself here, but does anyone remember the movie Fools Rush In? It’s one of my favorite romcoms. Anyway towards the end there’s a part where Matthew Perry’s character walks by a priest and the priest tells him there are signs everywhere. That scene has been on my mind a lot lately.
I have a vague memory of a sermon I heard as a child that discussed how you should never test God or ask for proof of something. It’s a foggy memory, but clearly remember sitting in the pews listening and also something about morning dew and grass. So because of this vague memory I’ve always tried my best not to ask God for proof or specific signs. Yet I’m always looking for something He has chosen to use as a message or sign. Ever since I heard her infusion will be on Christmas Eve I’ve been on the look out for more.
On Thursday after being admitted Kevin let me know that she would be getting a pic line placed on Monday. My heart sank. That again? We’ve already done the Pic line thing. Why again? He explained it was just temporary and would be out around the time we got discharged. I’m still not happy about it, but I’ve come to terms with it and understand why it’s needed. He also told me that we would be once again be in room one. That is the same room we were in when we were first admitted back in July. To me it was the second sign that CAR-T will be her cure. It seems fitting to end her leukemia journey in the room we started, full circle.
When I arrived on Friday evening I asked Kevin who was on this weekend and when we’d see our team. He broke that news that none of them would be with us for the infusion. First her no one from her nursing squad are on this weekend. Jackie, AJ’s absolute favorite is home for Christmas, but we knew that. Then he said Dr. Cooper, her attending is off. Dr. Molina, her fellow will be back on Thursday, after CAR-T. Genna her CAR-T research nurse is off for a week! I totally understand it’s the holidays and everyone deserves time at home so I’m not bitter, but I do wonder why they could have let us be home too. Especially when they won’t be here. I had a feeling this was not a good sign. Then I read about the passing of a fellow cancer fighter and my heart broke. Though we never met Lily Weaver I’ve followed her story for a while and feel such sorrow to see yet another young life cut short by cancer. I went to sleep on Friday with a heavy heart.
Yesterday we went to the Ronald McDonald House with the kids for a while. Ellie and Kohen had fun in the game room and seem okay with staying there later in this week. I can already tell it’s a magical place. What warmed my heart most was how much it’s supported by volunteers and the kindness of strangers. While we were there Ava was at the hospital with her Aunt Skye and Grandma. When we came back the kids got to hang for a bit before it was for them to head back. Ava always enjoys time with her siblings and really enjoyed that her Aunt Skye and Grandma were able to visit too so it was a good day, no signs, but a good day.
I think God was saving some big signs for today. Shortly after Kevin and I woke up we heard a knock at the door and saw that the doctors were already doing their rounds. Kevin quickly recognized the resident and asked if he was the doctor who had leukemia as a child. For those of you who have been reading this blog you may remember that on the night Ava was diagnosed we met an ER resident who came in to tell Ava he had leukemia as a child and was now becoming an oncologist to help kids like him and Ava. It was the only time she smiled that night. Well now Dr. Muller is back on his oncology rotation and he WILL be with us on infusion day. I’m not exaggerating when I tell you I cried. They explained that even though our team won’t be here they’ve left very detailed plans on how to care for Ava and are in constant contact with the team in duty.
Later as I was walking to the bathroom I saw another familiar face. Dr. Patel who was the overnight resident when AJ was first diagnosed is also back. If there’s any one resident who’s truly gotten to know our girl it’s Dr. Patel. During our stays in July and August she always came to visit and hang with Ava. Most of you know Ava’s not big on strangers, very introverted, and not a big talker. For some reason that’s never been the case with Dr. Patel. We’ve asked about her during each of our stays, but never heard where she was in her rotations and if she was still at Hopkins at another Baltimore hospital. AJ loves her and knowing she’s also here feels so right.
Our day nurse this weekend is Casey. She is the newest of Ava’s Squad and so sweet. She’s bubbly, talkative, and finds ways to get Ava time with the sweet 6 month old she befriended during our last admittance. Today she was telling us all about Camp Sunrise how Ava, Ellie, and Kohen have to go this summer. She mentioned that another nurse on the floor has been attending since she was ten. First as a cancer patient and now as a nurse. She told us how Amanda was a patient at Hopkins and is now on staff as a pediatric oncology nurse.
This week our team is not here. I hope they’re enjoying time with their families as it’s a well deserved. The care they’ve shown my girl and us over the last five months has been the absolute best. I’m glad they get sometime away. I’m also glad that in their place God has sent us survivors and familiar faces.
I’d also like to thank everyone for the DoorDash, UberEats, and GrubHub gift cards. I always forget how expensive it is to eat out 3 meals a day. The gift cards have definitely come in handy! It will be so nice when we get to move to the Ronald McDonald House in January and only have to worry about lunches.
There are signs everywhere and they all prove that if we just keep our eyes open God always gives us reasons to rejoice.