There are Signs Everywhere

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.

AJ with her Joy Jar from NEGU
Some air mattress snuggles
Breakfast picnic provided by one of my amazing students and her family. We are so loved!
Chillin at the Ronald McDonald House
Did you know the little tabs off soda cans fund the upkeep and fuel all the RMHC buses?
How do we spend the time during the day? Lots of easy riding, crafting, and playing games.
I got time do some watercolor painting for my mom.
Quick video of this year’s Snowflake Shop

Countdown

That’s what my life, our lives, feel like at the moment. Our Christmas cards are done, we baked Christmas cookies all weekend, celebrated with my family and had a mini Christmas celebration with Kevin’s. We made to mass one final time. Last night around 11 I asked Ava to turn off the light and go to bed. She told me she didn’t want to because it just meant less time at home. Today when I was sitting with my mom she told she only had two days left till AJ goes to Hopkins. This evening Ava asked if people would still care about her once she had CAR-T. I told her I would and that seemed to the right answer.

Yesterday’s homily was about having hope even when things are at their worst. How the Bible tells about hope in the desert, hope when imprisoned. My Jesus Calling readings have been all about having hope and letting faith guide your way. As a family, as parents, and as a patient we could not be more hopeful that CAR-T will be our Christmas miracle.

But I would be lying if I didn’t acknowledge the little fear I have in my belly. The little voice saying don’t be naive, nothing is guaranteed. How many parents have taken their kids with the same hope we have and left with unimaginable heartbreak and devastation. What makes me think we will be different? We are no more deserving than any other family. Each child fighting this horrible beast of cancer deserves a cure, not just mine.

So what I’ve decided to do when the little fears begins to grow is enjoy the moment and pray for my Ava, for her doctors, and for great faith in God’s plan. Then I look over and remind myself that right now Ava is doing well. She’s strong. She’s getting over a cold, but besides that she’s feeling good. She got a little limp, but she’s still zooming around on the Segway and having fun with her siblings. She’s got such a low burden of disease, God is clearly healing her. And if nothing else, at this moment she’s with me, loving me, sharing this life with me.

I have hope that this treatment will bring healing to my girl and the I also have the knowledge that she has no quit in her and powerful God on her side.

CAR-T Update

This week we’ve got our first CAR-T timeline update. As of now our team is planning to have us move into Hopkins on December 19th to begin a five day course of chemotherapy designed to help prepare AJ’s body for the new T cells. On December 23rd she will have another bone marrow aspiration to get the level of leukemia in her body. This is required by the study she will be a part of. Finally on Christmas Eve she will get the infusion of CAR-T cells. After that we wait for any CRS symptoms to develop over the next ten days. The earliest we can be discharged is January 5th. We have been told to plan to stay locally until January 27th. There is a chance if she has minimal CRS that we can head home early, but it’s better to be safe than sorry, right? So last night we officially placed our request at the Ronald McDonald House for December 19th-January 27th. The team has told us that this timeline is subject to change if the cells aren’t ready, but as of now it’s what we have to go with.

Of course sweet Ava was devastated. Actually she’s angry and devastated. When we heard the news she told me, “no, no, no! I will be at home with my family on Christmas. It will be a day of rest for me.” I get it. I understand and I totally sympathize with her. BUT at the same time I’m also thinking let’s do this. The sooner the better!

This round of HDMTX chemotherapy has been brutal to watch. On November 14th a sent in my beautiful strong fighter for her first dose. On November 18th she got dizzy while washing her hands, tried rushed back to the couch to sit down and on the way fell flat on her back. She fell so hard she really hurt herself. Then the sores came. Her mouth and stomach hurt so bad she had trouble eating. She recovered just in time to go back this past weekend. Once again she looked brighter than I seen in a week or so. Now she’s back with me with the darkest circles under her eyes. The mouth sores are worse and she cries from the pain she feels in her body. I hate this and if doing CAR-T early will prevent her from having to go through anymore then I’m there for it.

Yes knowing we won’t be at home with our families for Christmas sucks. We have amazing family on both sides and they each know how to do Christmas right. Ava’s right to be upset to know she won’t do Christmas Eve mass and then party with her cousins past midnight. It will also be my first year without our Noche Buena tradition. On Christmas Day we have the yummiest brunch and mimosas with Kevin’s parents. After eating way too many blueberry pancakes we head back home to sleep. I’m definitely going to miss the pancakes and mimosas. My thoughts were we can have Christmas anywhere as long as we five are together, where we celebrate won’t matter so much. I explained we could move Christmas up or back whatever AJ wanted. She still won’t talk to me about that. The few times I’ve brought it up she burst into tears.

Now it would be a lie to say I also didn’t bawl when I read the timeline of what this treatment will require. I don’t want to leave Ellie and Kohen for so long. Though they will be with us at the Ronald McDonald House until it’s time for them to return to school in January I don’t like the idea being away from them for weeks at a time. I’m considering seeing if we can get them from school on Thursdays and have them in Baltimore through Sunday. Kevin and I could take turns hanging with them and showing them around Baltimore. The idea of leaving my mom for a month is equally hard. There is absolutely nothing she hasn’t stepped up to do for us the over the last five months. She’s been the most amazing caretaker and grandma ever. We couldn’t have made it this far without her support. Having her live with us is a God sent.

Then of course there’s knowing I’ll be leaving my students for up to a month. That also sucks. Knowing that my main non family support system, my friends at school, will be in so far away as we deal with this period of treatment scares me. My Mustang family has truly carried me through this. So many days my friends have held me, listened to me, checked in on me. They’re the ones who stopped by unannounced just to cheer us up. They send things to brighten Ava day, drop of things their own children have made for her and tell me to keep going. They get that I don’t know how to just ask when I need something so they just do something. They do whatever they think we need. They’re always right. These are just some of the many reasons work has been so key to us getting through this. Day in and day out this special group of teachers have carried our family through the ups and downs of treatment. When we go it will be up to us. I won’t have them next door, in the lunchroom, or after school to discuss my fears with. They have been my safe space.

Then there’s this fear that I may have to do this alone. What if Kevin’s request for teleworking from Baltimore isn’t approved? Though his team and supervisor have been amazing they may not be able to grant such a long period of telework. Then what? How will we deal with being away from Kevin for longer periods? Throughout this nightmare we’ve grown so strong. He is truly part of me. Yes I’ve learned that we don’t need to be together to be of one mind. We have been able to support each other through this and always kept our goal as the number one motivator. When you have “get her cured and healthy” as your common goal we tend to think more alike, act in the same ways, and arrive at the same decisions even when we’re not together. So I know we’ll make it, but I don’t want to have to try.

So yes I get why Ava is angry and I get why she’s so sad. But all the hardship and inconvenience will be more than worth it if when she is cured and healthy.

Friends cancer has taken so much from us. It’s taken so much from Ava. She has very few friends, doesn’t know what high school is like, can’t go many places, and the only people she feels close to are her cousins and God sisters. She was ready to party it up with them this Christmas. Right now to Ava it feels like cancers also taking her Christmas. That’s understandable. But to this mama it feels so amazing to know that on Christmas Eve, the day celebrates the long arduous journey that Joseph and Mary took to find a place to give birth to our savior, my baby girl will be receiving the cells that can save her life. Now this may most certainly be a stretch, but to me it’s further proof that God is with us. He is in this situation with us, and He is going to cure and heal my sweet Ava.

But God

This morning my heart was broken. Around 10:30 last night Kev texted to tell me that AJ had a temperature of 102°. That meant she’d in at Hopkins till at least Wednesday and I would be heading back after work today. When I told Ellie she was devastated. She complained that “AJ was supposed to come home on Monday, that was the deal”. She also mentioned she’d only gotten a few hours with me. As I said my heart was broken. Broken for my girl who was at the hospital and broken for my girl who was looking forward to having her sister and mommy at home. After praying the rosary on the way to work I’d come to terms with the situation and made peace with it. At 9 am Kevin texted to let me know since she’d cleared the methotrexate, had good counts, and stayed fever free since last night Ava had been discharged. I literally cried tears of joy. Tonight my heart is full.

Now if my mind will allow me to get some sleep tonight I’ll be all set!

Driving Away Hurts the Most

I know I haven’t posted in a couple weeks, but life has been so busy. Since AJ got home from her first HDMTX treatment she took a fall and really hurt her toe. Besides that and a few days of mouth sores she seemed to tolerate it well.

Last weekend my mom took the girls to see Frozen II and enjoyed a nice Saturday with them. When they got home they helped me decorate the Christmas tree and a bit of the house. On Sunday got family pictures taken and made a trip to Enchant DC. I wish we had spent more time at Nats Park, but Ava got extremely frustrated after only making around the iceskating rink once and Ko was already grumpy so we headed home.

We were able to spend Thanksgiving at home and got to enjoy some family time before heading back to Hopkins for her second round of HDMTX. Even though we got there by noon on Friday the bag of chemo was not hung until close to 11 pm. This is super frustrating because it means she’s definitely there until at least Monday. Sometimes kids can clear the methotrexate before 72 hours and be discharged sooner, but it’s hard to get that to happen when the clock begins at 11pm.

Since it was a holiday this time around I was able to check in with Ava and stay with her until this afternoon. During our time in the hospital we spend a lot of time watching Hallmark movies, doing our nails, walking the hallways, and choosing where to order takeout from. Grub Hub, UberEats, and DoorDash are our lifesavers when we’re inpatient. While we were at Hopkins Kevin was mostly at home with Kohen and Ellie. I think I’ve mentioned before that I am not a “Martha” and doing the household stuff is not my thing. Kev on the other hand does pretty well with tidying the house and makes the most of his time at home so this arrangement works for than one reason. Yesterday afternoon he was able to bring the kids to Hopkins to hang with Ava and I. Though it’s cramped and there’s not a lot to do they really do enjoy being together. I’m so grateful that they’re close and that even though it feels like Hopkins is so far home home it’s actually just an hour away and the kids can visit on weekends.

Today AJ and I focused on walking, drinking, and clearing chemo. Ava met the cutest baby girl who was her neighbor this time around. We kept going out to visit with her at the nurses’ station. She’s at the super cute age that sits in a Bumbo and tries to grab everything. AJ really is enjoyed trying to get her attention and making her smile. Around 3 Kevin arrived with Ko and Ellie. As happy as I was to have everyone together I knew it just meant that leaving Ava was getting closer. We took a couple laps around the floor, went down to Balducci’s to get some mochi and played some Uno. Ava also introduced her sibs to her new friend. Explaining to Ellie why a baby under one is in the hospital was not easy.

Ava’s HDMTX levels were taken at 4:30 and by 5:30 her nurse Caroline let us know she was at .5. She needs to be below .4 at the 18 hour mark and then .1 to head home. Last time she was at .34 at the 18 hour mark and .18 at the 24. All this gave Ava the impression she has a chance of going home today and hearing she was at .5 hit her very hard. It’s so hard on my mommy heart to see her crying. It was even harder to leave her. I thought having Kevin take her to treatments or begin overnight stays with her was hard, I didn’t realize how much leaving her would be. There’s just something so wrong about leaving your baby, even your 14 year old baby, at the hospital. I know it’s just for a night, possibly two. And I know with my whole heart she’s in the best hands. I also know Kohen and Ellie need me as well. But the thing is no one replaces mom and at the moment she’s the one that needs me most. Driving away from Hopkins today was brutal.

The thing is I can always count of Kohen and Ellie to lighten the mood and on life to keep going. Shortly before getting home I stopped my Burger King to grab them dinner. As we pulled away Ellie commented that after this meal she quit fast food because that’s all they’d eaten since I’d left. Since Thanksgiving weekend and unlike every other year my kids aren’t tired of leftovers they’re tired of fast food. Just another way cancer has changed our lives.

When we got home I had laundry to loaded and to fold. Wesley needed to be fed and also walked. Even though I’m not a Martha I’m doing all I can to keep busy and rush the time along. Ava’s next level check is at 11. I’m 99% sure Kev won’t give me the update until a reasonable time tomorrow, but it’s all I’m concerned with at the moment. My heart is with Ava and until she’s back it won’t be whole.

Below are some pictures from the last two weeks.

First 24

Ava’s HD MTX was hung at 11:45 pm last night. She’s got about 20 minutes left on the infusion. Then we just start waiting for her to clear it. Typically it’s cleared between 48 and 72 hours. Kevin sent me a lot of videos and pictures today. I think he was trying to reassure me I wasn’t missing anything. When I got here around 8 pm she was excited to see for a few minutes then went back to watching the Simpsons. Since Kevin left we’ve eaten dinner, watched A Few Good Men, and are now ready for bed. Hoping for an uneventful evening and sleep for both of us.

Saying Goodbye to Kohen and Ellie.
My soccer girl

Pluses and Deltas

Just a stream a consciousness as I review my day.

+

• Ava didn’t need to continue pheresis today.

• She will begin IM tonight.

• Ellie’s back to cartwheeling.

• Kohen made it to basketball practice.

• Got to enjoy some brief 1:1 time with Ko while we picked up dinner.

• Got great advice from my 11 year old son, just trust mom. Be present and trust.

• FaceTimed with AJ and Kevin

• Christmas PJs arrived.

• Tomorrow is Friday

• We’re one day closer to being together.

🔺

• Cried about 10 times today.

• Totally let my emotions get the best of me.

• AJ isn’t home with me

• She was conscious during her LP and in a lot of pain.

• Ellie’s still coughing up a storm and missed school again.

• I can’t soothe or cuddle her because I won’t be able to trade with shifts with Kev if I get her germs.

• Kohen’s started sneezing and has probably gotten Ellie’s cold.

• Won’t be able to get our Christmas Cards done this weekend like I had planned.

• This is the only picture I got of my girl today.

I throw my hands up in the air sometimes saying ayeoh, I gotta let go…

I’m pretty sure, actually definitely sure, this is not what Taio Cruz wrote these lyrics for, but man do they fit our day.

We had a plan. One that I wasn’t too comfortable with, but had come to accept. Ava was supposed to be gone one night. She was supposed to be back home with me tomorrow. She’d returned for chemo on Friday and then continue to go to every Friday until the CAR-T cells were ready. When my girl left me this morning at 4:30 a.m. that’s how we started the day. Ava’s surgery went well. She handled it like a champ and I somehow was able to teach. It felt like maybe this would work well and we’d be fine.

Then during my planning period I got a phone call from Kevin and Dr. Cooper letting me know that our understanding of AJ not needing to move into Interim Maintenance was not correct. After rereading the 1721 trial guidelines and putting in a phone call to the study head her oncologist learned that actually AJ would need to begin IM at the earliest Friday or at the latest Tuesday. During IM she will need to check in and stay for 3-4 days until the high dose methotrexate has cleared her body. Ten days later they she will got back and do it all again. She will do this 10 day cycle until her CAR-T cells are ready. This was the first bummer of the day. I didn’t think it was fair to ask her pick a weekend stay so that I could stay with her and so we left it up to her. She chose to begin Friday, I’m pretty sure it’s because she put my needs in front of her own. Somehow this child I’ve been blessed with has turned into this caring and amazingly considerate young woman who constantly leaves me in awe. So while I was stewing over the change in plans, she rolled with it. She was okay with coming home for a day and then heading back to four.

Around 2:00 they got Ava in a room on 11S. They began the apheresis around 2:45. Things were going well for about an hour and a half. Then the machine stopped working and for some reason it could no longer pull blood from her. They had to stop for several hours to determine if the problem was due to a blood clot around the line placement or a kink in the lumen. Shortly after Ava FaceTimed me in frustration. Seeing her upset that it wasn’t working and that they’d gotten minimal blood simply broke my heart. After speaking to Kevin and her CAR-T nurse we learned that if she had to continue the process tomorrow she would not be discharged at all before beginning IM. They would do an X-ray to determine if it was a clot that they could give medicine or if it was a kink which would require another surgery tomorrow to replace the line.

Around 8 pm Ava FaceTimed me again to let me know they were stopping for the day. She told me she was tired, wanted to be done, and didn’t want to do this anymore. Somehow I made through this phone call without bursting in to tears. I cannot adequately express how I feel knowing my daughter hurting and I’m not there to help her. It’s the same feeling I have when I’m at Hopkins with her and leave Kohen and Ellie at home. No matter where I am, I’m failing.

Around 9 pm Kevin FaceTimed me with Dr. Cooper to discuss the finding of the X-ray. It turns out it was a small blood clot so AJ will be receiving medication to clear the clot and could potentially begin pheresis tomorrow. They then told me that there was a chance they collected enough cells today and she may not need to continue. Unfortunately we won’t know until the cells are reviewed tomorrow afternoon. If they have enough cells AJ could begin IM tomorrow meaning she wouldn’t come home, but could be back earlier than if she started Friday.

The level of uncertainty that comes with cancer is through the roof. I’m heading to bed with no idea what tomorrow will bring, but peace in my heart because during our last FaceTime sweet AJ was back to smiling and being her positive self. The only certainty I have is that this child of mine is a warrior.

GMOs

I know GMOs get a lot of bad press and when it comes to food we don’t want them in our bodies, but my sweet Ava is about to become a GMO and I couldn’t be more hopeful. We met with Dr. Cooper yesterday and enrolled Ava in the CAR-T study. It wasn’t a super long meeting, but we left with information overload. We already understood the medical process and the side effects so that wasn’t what got us it was the continued tentative plans for our family.

The CAR-T process itself is pretty straight forward. Monday Ava will go in to get her heart checked and draw pre-op labs. On Wednesday she will arrive to the OR department at 5:30 to have a new line put in. They will use this line to hook her up to a large machine that will draw her blood, remove her T-cells and then return her blood to her. This process is called apheresis or pheresis. It will take about 4-6 hours and we were told the main side effect is boredom. Since it’s a long day she will stay overnight and then be discharged Thursday morning. On Friday she will go back for a low dose of chemo. This is also the day they will ship her T-cells to the company that turns them in to CAR-T cells.

The process of creating CAR-T cells takes about 4-6 weeks. During that time she will continue to go in on Fridays for a low dose of chemo. The goal of this chemo is to keep the .34% (updated number from trial headquarters in Seattle) leukemia she has left and not let it increase. At some point as early as December 18th or late as December 26th Hopkins will get her CAR-T cells back and we will go inpatient.

They like to check people in on the later half of the week for a specific type of chemotherapy that will allow room for the CAR-T cells. The day we check in and get the first day of chemo is known as day -5. On day 0 they will do the CAR-T infusion. They like to do this on a Monday or Tuesday. They will then monitor her in the hospital for the next ten days. Typically once the CAR-T cells begin doing their job there is a lot of inflammation in the body that causes extreme flu like symptoms. The CAR-T cells are there to attack and destroy all the leukemia cells it’s like a mini firework is set off each time one is destroyed. The fireworks trigger inflammation and the flu like symptoms. The short name for this is CRS. Dr. Cooper feels Ava may not have bad CRS if she gets any at all because the amount of leukemia cells in her body is so low. CRS normally occurs from days 1-5. They will also monitoring her for temporary neurological affects like confusion or seizures. They believe this is also related to the inflammation and it is also not permanent. After we get through days 6-10 if all is well she will be discharged.

After she is discharged she needs to be within a certain distance of Hopkins for the next 20 days. Unfortunately we are right on the line of being to far if we come home. So depending on how her first 10 days after infusion go we may need to move into temporary housing in Baltimore.

On day 28 they will do another BMA and see if the CAR-T has done its job and she is MRD negative. CAR-T cells look for the genetic mark CD19 and destroy cells with the that “flag”. Well all B cells carry that flag so that they’d like to see is for Ava to not have any B cells left. They’d like her to not have any B cells for at least 6 months. Ideally she never regains her B cells and thus can never have B Cell Leukemia again. The next best thing is that once the CAR-T cells do die off it’s been so long since her body has no memory of the leukemia and her B cells are normally. Like the 99.5% of her B cells are now.

Since she will have no B cells she will be getting IVIG infusions until they come back and potentially for the rest of her life. If the CAR-T works as it should this is the only thing she will need after being release from the hospital. She will no longer get chemotherapy and avoid all the toxicity that comes with it.

As you can see there are many reasons we have chosen this path and are full of hope, and yet there are no guarantees so we must be guarded. My gut and my heart tell me this is Gods answer to my prayers. So for now I’ll hold on to this.

What are we currently trying to figure out and get comfortable with is the logistic. For Ava it’s the potential of not being home for Christmas. All she wants is Christmas Eve with the cousins and Christmas morning breakfast with her granddads blueberry pancakes. I don’t think she’s realized she’s leaving Wesley so we’ll have to deal with that when it hits. For Kevin and me it’s the idea of leaving Kohen and Ellie for up to a month. How do we care for Ava and make sure they’re not being neglected? We will splitting time between them, but we both feel more secure when we do it together. I’m also struggling with the fact I won’t be with Ava when she checks in next Wednesday. Since I have to save my days I can’t go to anything next week. I need to find a long term sub who would ideally speak Spanish. There is also a part of me who will miss my students and feels guilty for leaving them. Then I feel guilty for ever thinking of that. Of course there’s no comparison of who I need to be with more, but those 18 kids keep going too. Then I remember I also need to start all our Christmas preparations much earlier than expected. And of course in the back of my mind is the thought, what if? What if we do all this and it doesn’t work.

For now though I’ll enjoy having my family together and live in hope.

For those wondering how Ava’s is dealing with all this, she’s good. When Dr. Cooper asked what she knew about what was going on and about CAR-T she told her everything I wrote above. Dr. Cooper said we were done because Ava clearly gets it. As we were waiting on the elevator to go up to 11 S she pointed out the 8th floor NICU and said that’s where I’m going to work. My girls got plans and goals to reach. Leukemia will not stop her. Sure she may be need to be a GMO and a lot of God’s Grace to get there, but get there she will.

For now all she cares about is playing her new game Logo during family game night tonight.

Joining the CAR-T Party

We heard from Ava’s oncologist a few hours ago and unfortunately Ava is still MRD positive with .46% leukemia in her marrow. While this is down from the 1.6% she had the end of August the chances of relapse with our current treatment plan are higher. So we will be moving to CAR-T therapy. Of course this is not what we wanted to hear, but I have to remember I’m not in charge of how God answers my prayers and I am still confident He’s answering them. When Ava was first diagnosed my biggest fear was not would she beat it, it was would she relapse. My prayer has always been that she beat it and never relapse. Soon after Dr. Molina mentioned that moving to CAR-T may be a way to prevent relapsing the it occurred to me or God whispered, I’m never certain, that this unknown path was actually leading to my prayers being answered. We definitely have a lot more research to do in order to prepare for the CAR-T path, but for tonight we will join sausage and pasta and being with our kiddos for another night. I got this from a fellow cancer mama minutes after telling her the results. It was just what I needed to refocus and keep hope alive.

So far from the little I know the benefits of CAR-T are that Ava will only have chemo for about another four weeks and then God willing once she is through CAR-T she will be done with chemo. So this means less toxicity and her treatment could potentially end in two months versus active chemo through April and then maintenance chemo for another two years. There also potentially less chance of relapse so that’s good. Another bright spot? Her fellow happens to be doing his research on CAR-T therapy.

In case you’re wondering how AJ is taking the news you’ll be happy to know that when Kevin asked how she was feeling she told him she felt she need sausage and pasta for dinner.

Wish I could end this with a picture of my girl and her beautiful smile, but tonight I’m feeling selfish and want her all to myself.

Update: I lied. I figure y’all are so invested in our girl you also deserve some of her amazing personality as reassurance that she’s going to be just fine.