Clearly this Easter is different from years past. For me it’s a stark contrast to last year’s. Last year we had cute outfits, egg hunts and family. We also had fevers that required Tylenol every six hours on the dot, blue nails, and shaking so strong I would often wake up thinking there was a earthquake happening. I remember last Easter like it was yesterday, sitting inside St. Rose hoping that the Tylenol AJ had taken would last through the mass. Having to come home right after so she could have more Tylenol and rest. More than anything though I remember feeling helpless and so scared.
But that thrill of hope, the thrill Mary, John, and Peter must have had when they reached the empty tomb, the hope that became reality in what God did for our family this year, that hope makes Easter even more special this year. It reminds us that Easter isn’t about cute outfits, adorable bunnies, lavish baskets, or even a filled church. It’s about knowing that we are so loved that Jesus gave His life for us and also conquered death for us. His love allows us the ability to hope that our end is only on this earthly planet. In the end Easter is about hope itself.
Knowing God also allows us to know that this quarantine will end and it allows us to hope for brighter days with family, friends, and good health. While your Easter may not be what you’re use to, remember it is still Easter and we are Easter people. So stay hopeful my friends!
Sorry it’s been so long since our last official update! I have like three posts sitting unpublished, none seem quite right. Anyway, wanted to let everyone know that AJ is doing well. She was able to enjoy eight days of school before MD went into lockdown. She loved being back with her friends and enjoyed high school life. Even though it was short lived it reminded her what’s to come.
Since being in quarantine we’ve only had to go to Hopkins once. Her three month post car-t check up went well. Still no b-cells and no sign of leukemia. This means we will only need to go to Hopkins once a month for IVIg. With everything going on it makes me so happy to stay out of the hospital. Seeing her at a healthy weight, off most of her meds and regaining her strength makes our hearts so happy.
Our days at home are spent with online school, video games, family walks, FaceTime with friends, biking, and skateboarding. This week we went to get the kids new bikes and they’re eagerly awaiting their arrival. We’ve taken advantage of the new soccer field in our neighborhood and let them go out to play when no one else is out. AJ has been trying to regain her speed and improve her running. At the moment she’s also enjoying blocking Ellie and Kohen’s goals. They’ve also been using the time to improve their baking and cooking skills. It’s funny how they’re just now getting time to do so many things Kev and I use to do all the time as kids. All and all the kids are handling quarantine really well. I’m pretty sure it’s because we’ve been in a similar situation since July. Besides good health and the privilege to stay home I’m most grateful that they have each other. Built in playmates are definitely a plus when you can’t leave the house. Honestly, it probably affects us adults more than them. Hope everyone is doing well, social distancing, and staying healthy.
Hey y’all! Hope everyone is doing well on this President’s Day. The Guishard household is currently going through some disinfecting as Kevin, Ellie, and I deal with a nasty cold. Poor Kev came home feeling ill last Wednesday and we both been feeling cruddy since then. Ellie has been battling a cough for over a week and just can’t seem to get past it. However, we all feel a little bit better and today has been the closest to normal we’ve been. By the grace of God Ava and Kohen have shown no signs of catching our cooties.
As usual my mom has been the true MVP of the week. She’s taken care of Kevin and me as well as the kids. I’ve said it before and I’ll say it again, I’m sure when she moved in with us she never imagined she’d be back to raising kids at the age of 60. Yet here she is taking kids to practice, basketball games, mass, lunch and anything else we ask of her. She does all this and somehow manages to make sure the adults are fed and taken care of. So grateful to have her.
Ava’s been feeling great and growing so strong. On Saturday Kev took Ellie to the pediatrician to get checked out. When they returned Ellie told me that she weighed 72 lbs. It amazes me that just a few months ago Ava weighed two pounds more than Ellie does. The transformation she’s gone through is a true miracle. Add to it that there’s a good chance she’ll be in school in a couple weeks and I’m just in awe of God and the power of prayer.
This week is a big one for us. On Thursday Kohen turns 12. How that’s possible I’m still not sure. Also on Thursday Ava goes into clinic for her next study labs to see how well her CAR-T cells are doing. We’d love your prayers and continued well wishes that our girl’s CAR-T cells are strong and keeping the B cells and leukemia away.
Now that we’ve gotten to enjoy Ava’s MRD- news for a week or so I’d like to answer some questions we’ve been getting.
Typically a child with leukemia reaches MRD- at the end of induction, the first 4-5 weeks of treatment. If not by then, by the end of consolidation the next 60 days of treatment. After that they have to go through another two years of various types of chemo as an insurance plan that the leukemia will stay away. The hope is that doing it this way they will avoid a relapse.
As we all know Ava is not a typical child. Since she was unable to become MRD- by the end of consolidation she moved to CAR-T. This means that the she is done with chemotherapy. This is bittersweet because while it potentially saves her two years of pumping poison into her body, we do not have the chemo running around keeping the leukemia away. Because of CAR-T our hopes and prayers are that those cells continue to work for at least 6-12 months. We need them to stay that long so that they keep her B-cells away and give her body time to forget that it ever made leukemia cells. This makes it literally a wait and pray situation.
In the mean time we will have biweekly or monthly checkups to monitor the situation and administer her IViG. This coming Friday we will go and meet with the team for labs, a checkup, to discuss port removal, and her return to school. As I’ve mentioned before this is something that has her very stressed. She’s scared to go back without hair. She feels she’ll be made fun of and no one will like her. We’re scared to send her back during cold and flu season. Yet we’re all in agreement she’s so bored here and needs to go back. She needs to socialize with kids her age and needs the mental challenge that learning brings.
Besides all this we’re really just making an effort to live and enjoy life. If AJ’s B-cells return before six months she moves directly to a bone marrow transplant so we’re packing in as much fun as we can. We’re being hopeful and planning some trips for the spring and summer. We’re hoping to get to a few fun spots around MoCo was well. Of course it would be easier if we weren’t in the middle of cold and flu season and the darn corona virus weren’t around to scare me even more. But she’s fought to hard and we’ve been through too many scary scenarios to continue living in fear. In the end all we can do is put our trust in the Lord, give thanks, and live.
So what’s next? Lots of prayer, thanksgiving, and living!
A year ago today we were at Children’s. The hematologist told us that Ava did not have cancer. I was so happy I cried when he told us. I think I needed to hear that my gut was wrong so badly that I didn’t follow up. I wanted to believe him so much I didn’t press for more. I didn’t question why he didn’t call us back with tests results. I didn’t ask why he wasn’t ordering a BMA like our pediatrician expected. We left Children’s hoping to get on with our lives. Little did we know six months and one day later we’d find out Ava had leukemia.
Over the last year we’ve all learned so much. Today I’d like to focus on the positives. Not because there aren’t negatives, there are plenty, but because it’s just not how we roll. So here are lessons of goodness we’ve learned so far on our journey.
Our kids are tough! They’re all fighters. Each of them has had difficulties to overcome this year and they’ve all done it. I don’t know what the future holds for any of them, but I do know they’re survivors. We all know AJ is special, but I fear I don’t give Kohen and Ellie enough credit for their own badassery. They’re equally notorious.
Not new learning, but definitely reaffirmed, family is EVERYTHING. Also a moms job is never done. The way my mom and Kevin’s mom have stepped up, is a testament to this. Some days I’m sure my mom feels like she’s back to raising kids. Except this time she’s doing it as a single mom and with two dogs to boot. Love you so much, ma!
Kevin and I have learned to truly live our vows, or as Ellie would say, our vowels. Our marriage is not perfect. We definitely bicker and have days were we don’t see eye to eye, but we do our best together. We’ve learned to support and trust each other. It’s funny how much easier life is when your are not second guessing each other’s judgement and decisions. It allows for a lot less bickering.
I learned it’s okay to not always be strong or have it together in front of your kids. It’s okay to show emotion and fear. I think it helps them do the same. It teaches then that feeling your feelings is normal. I also learned that you can’t let fear stop you. I hope we’ve taught the kids that.
We’ve learned so much about having faith and living in hope. As I’ve written before I am not a patient person. This journey has made me wait for the “MRD negative” much longer than I would have liked. I still pray for it, but I’m getting more comfortable with God’s plan. So much so that I know no matter what happens after Ava’s BMA on the 22nd we will be okay. I’ve learned my time is not the end all be all. How did I learn this? Faith.
I’ve also learned that even if your going through some pretty shitty times you can still be kind and help someone else out. When we joined this club no one wants to join, we had amazing friend put us in contact with two amazing women who have been there for us the whole way through. Maura and Melis, I will be forever grateful. Dana and Kristin, thank you for putting each of the ladies in our world. My friend Carla didn’t hesitate to jump in and start prepping me for the battle. These three women are on other side and didn’t mind stepping back in the fire to be there for us. I hope to one day be as helpful other families as they’ve been to us.
I’ve also learned that some of the best support will come from mamas who are in the thick of it with you. When we were first admitted to Hopkins we met Princecine, Anne, and Nga. Anne and Nga have daughters admitted the same day as Ava. A few days later Jennifer came to the floor with her sweet Zoey. All of us have girls fighting a horrible nemesis. They’re the ones who go through the anxiety with you, the positives, the lows, and the unexpected stays. They’re the ones I hope to go through the triumphs with.
Throughout this year I confirmed that no matter what you hear on the news, read on Facebook, or see on TV the world is full of good people! I learned that time and distance don’t matter, if you want to be there for someone you will find a way. Kev and I have had friends from middle school and high school show up in so many ways it’s humbling. We’ve had so many coworkers, neighbors, and old friend support us in so many ways I can’t find a way to put our appreciation into words. The number of people praying for our girl is utterly amazing.
I also learned that Mister Rogers was right when he tells the story about finding the helpers. When I was a boy and I would see scary things in the news, my mother would say to me, “Look for the helpers. You will always find people who are helping.” I can’t tell you how many helpers have been with us on this scary path. Complete strangers who show up for us and our family. They’ve done it out of the goodness of their hearts, expecting nothing in return. Megan the lady who found on the soccer field one day and has become such a great friend. Rose and Steve from the Washington Spirit organization who are always reaching out and finding ways to make Ava feel so special. The Gold in a Fight organization who provided us with yummy meals on Thanksgiving and Christmas. The Ronald McDonald House and all the volunteers who hosted our family during our two week stay in Baltimore. The Olivia Hope Foundation and Never Ever Give Up organization that frequently send packages for the kids. Even ladies who I didn’t know existed and sent so many Color Street nail wraps for the kids at Hopkins. They’ve all taught me there’s no excuse not to be a helper.
In about ten days Ava will have her next BMA. We will learn if CAR-T therapy did the trick and she is MRD negative. A year ago I was praying to hear a specific answer. This year my prayer is slightly different, while I definitely want to know she’s MRD negative, I equally want us to continue to have this faith, this level of hope, and this view of the world. This year I’m praying that she be MRD negative because it is God’s will, not just mine. I pray that I am able to trust in His will, His time, and His way.
I know better than to think MRD negative is the end of the childhood cancer journey. I now know it is a lifelong journey, one that is better when I keep in mind all that we’ve learned this year.
Our family has been blessed beyond belief and no matter what happens I will never forget that or stop being grateful.
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.
Ava's Squad 