Today Dr. Molina let us know that Ava’s final test result, NGS, came back. It is NEGATIVE for Leukemia. Friends this is the one that has never gotten to zero Leukemia/abnormal cells! This is the one that showed 6-8 cells per million in February, 2-4 cells per million in May, and now in July it’s 0 and completely undetectable!! We are so overjoyed and thankful. When I asked AJ how she felt she said it’s awesome, but I got work to do. Yes, baby girl you do, we all do!
That thrill of hope has carried us so far, but your constant prayers, well wishes, and love have held us even longer. We are so grateful to all of you. God has been so good to our family. Now we just pray for this to continue as we move to having BMAs every three months.
We also ask that you continue to keep all of the children fighting childhood cancer in your thoughts and prayers. It has been a hard couple weeks for the Hopkins 11th floor kids. Today I watched the livestream of an 18 years olds funeral. He lost he battle with brain cancer. Though we did not meet Justin we’ve corresponded with his mom and are part of the same organization. Children are getting diagnosed and dying everyday. We most do more. As Ava said we have work to do.
We specifically ask that you keep Ava’s fellow warrior, Ailani in your prayers. She’s recent relapsed. Her treadmill is CAR-T and a second BMT. Ava is even more convinced CAR-T will serve Ailani as well as it as her. Ailani is still in need of a 100% bone Marti match. Maybe you are her match?
My heart is heavy, my mind is a jumble, and my soul is hurting. I want to live in a world where our differences aren’t ignored or used against us. I want to live in a world where those differences are seen and celebrated. I want to live in a world where we notice each other’s hardships do whatever we can to help each other. So to my white friends or friends who keep saying all lives matter this post is for you. When Ava was diagnosed with leukemia, our family’s priority was saving her life. I would tell anyone who would listen that the world couldn’t lose her because her life mattered. She was here to be someone and do some fantastic things in this life. Kevin and my priority was getting her healthy. She was first in our list of petitions and thoughts. Her care, her treatment, her needs were the most important to us. Not because we loved her more, but because she was the one suffering. She was the one who needed it the most. Never did we think that our other two children didn’t matter. Never did we neglect Kohen or Ellie. Never ever did they say or assume we didn’t care about them or their health. They understood that at that time, AJ’s life was the one in danger. They understood that we could say Ava’s life mattered and not take it as a slight. At the time, they were 9 and 11, and they realized that someone else could be the focus, and it didn’t change their importance or our love for them.
Dear friends- Our Black brothers and sisters are hurting. They’re the ones who need to be our focus. Their struggle, their safety, their lives need our attention and care. Those are the lives we need to fight for right now. Stop saying all lives matter if you haven’t first said; Black Lives Matter. For my Christian friends- are you doing Jesus’s work if you’re not speaking out about the injustices the Black community is suffering? As a friend said, are you washing the feet of our Black brother and sisters? If it were Jesus suffering these things, would you be speaking up? What would you be saying? Are you doing that now? Aren’t we supposed to see Jesus in everyone, Black people included?
If you think I’m speaking to you, I probably am. Look at these faces, which I adore with all my heart. Look at them and then tell everyone you know on all the platforms you have that Black Lives Matter.
First off huge thanks to everyone who came to Ava’s birthday parade. It was amazing. Kevin and I are continually humbled that so many people love and pray for our Ava. There’s no way we could have made it this far without all the support y’all provide. I’ve included a video of her parade at the end of this post. I apologize that it’s 12 minutes long, but that many of all showed up.
On the 8th Ava and I made the trip to Hopkins for her BMA. There was some excitement surrounding it because they moved the procedure to the OR in the middle my class’s math Zoom. Thankfully my teammate was able to jump in and teach until I was able to get back online. Yes, you read that right I hosted class from JH. Any cancer parents will understand the need to save any and all leave for emergencies.
Since her BMA we’ve been anxiously awaiting results. For me that means little stress baking, praying, and tackling decluttering projects. Kev deals with it by supporting me in whatever mood I’m in. My moms is also good about balancing checking in, listening to me vent, and giving me space to be quiet. Everyone else pretty much knows to stay out of my way. Sometimes I wish I could accurately communicate how it feels to wait and hear of your child still has cancer, has relapsed, or is going to need a bone marrow transplant. Then I realize I wouldn’t wish that level of anxiety, stress, or fear on anyone. Since I’ve never had cancer (knock on wood) I can’t say which is worse, but being a cancer parent leaves you with PTSD. That PTSD is certainly heightened when awaiting test results.
So anyway after waiting 11 days we finally got a call from Dr. Molina letting us know that the results from the NGS should a drop in the abnormal cells they’ve been tracking. They were 5 per billion and now they’re 2 per billion. He said they’re more confident that these cells aren’t leukemia and more likely primordial cells that won’t develop into anything. Ideally they’d love for that number to be at zero, but he suspects it may just be Ava’s norm. He also shared that as more patients like Ava have CAR-T they’ll see it come up more. We’re so lucky to have her at Hopkins with Dr Brown- the head of COG and Dr. Molina who also works at NIH. This allows them to present Ava’s case to doctors CHOPT and CHLA. Everyone agrees to proceed as we have. So at the moment there’s no need to go to transplant. The plan is just keep tracking the annoying cells. We all agree that in a few years we’ll just accept this is Ava’s make up and accept she’s just an annoying case. I mean she has been since the beginning so why change her MO?
So where does this leave us? Grateful and finally able to breathe.
At least until it’s time to await the results on the B cell test she will have this Friday. Then we do it again when she goes back her next BMA in late June. I will say as we get closer to six months I get a little more confident.
At some point this week my prayers changed into asking God to please let the doctors see that she was indeed healed. My heart knows it, 95% of the time my head knows it too. I mean take a look at the pictures and videos below. How could I believe anything else?
On Friday 4/24 Kevin and Ava headed to Hopkins for her monthly IVIg and labs. Her oncologist discussed the need for an additional bone marrow aspiration on May 8th. She seemed to handle the news well. Besides that everything went well and she was back by early afternoon.
We took advantage of the nice weather and went on a hike on the trail in our neighborhood. After we were able to get some Italian ice from Carmen’s Italian Ice. In the evening Ava started to get a pretty bad headache. We weren’t sure if she was dehydrated or she hadn’t eaten enough. After checking her temperature we felt it was okay to give her some Tylenol and put her to bed.
Then on Sunday when I went to wake her up for mass she complained of her head still hurting. Then she started complaining that she felt very nauseous. Poor girl sat through the streaming of mass with her eyes closed and a bucket in her lap. We once again took her temperature and gave her Tylenol. I was starting to get nervous something might be up and sent an email to her oncologist. Dr. Molina wrote us back right away and told us that migraines are a common side effect of IVIg. He told us to continue giving Tylenol as needed and keep him posted. She felt fine by mid afternoon.
We all breathed a sigh relief once we heard back from Dr. Molina and her headache improved. I’m not sure I can accurately describe the level of PTSD a cancer parent has and all things that ran through my mind. When she mentions not feeling well the worry is immense. I wish I could say I don’t worry, but that would be a lie. The only thing I do more than worry is pray.
On May 8th she will have her next BMA and we would so appreciate all the prayers we could get. Earlier this week Dr. Molina let us know that she still has no B-cells. While that is very encouraging we’re still waiting for her clear Next Gen Sequencing results. Since January these test have shown an obnoxious number of leukemia cells. 6 per million or something. The doctors are pretty sure they’re either dead leukemia cells, or DNA markers that will never go away, but also never develop into leukemia, or possibly leukemia that the CAR-T has yet to get rid of. They’ve assured us that as of now it’s nothing to worry about, but if they were to increase we’d possibly need to move to transplant. So we’re getting a 6 weeks check and praying they’ve gone down or at least stayed the same. They wanted to do it May 1st, but we asked that she be allowed to enjoy her birthday.
On May 4th Ava will turn 15. Quarantine is most definitely not how we’d planned to celebrate her birthday, but we’ll make due. It would be much easier to celebrate her birthday if we could go out and live life. That’s all she truly wants, some fun experiences that make the fight worth it. Another lesson that cancer has taught me is that things don’t make everything better when all you want is to be healthy and carefree. That realization has made gift shopping so much harder. Regardless we’ve got some special meals and birthday surprises planned.
Please indulge me as I share what I’ve learned about my daughter this past year and who she is as she turns 15. Her likes and dislikes. First and foremost, she is a fighter. Ava has a level of maturity I hope to one day have. She’s gotten through this year with such faith and for that I am both proud and grateful. She’s kind and loving. Somehow she can’t stand drama, but can be so dramatic. She’s a true introvert, but once she lets you in and gets to know you she’s a complete chatterbox. Sometimes I think she was born in the wrong century because her taste are so not 2020. Her favorite songs are Cool it Now by New Edition, Manic Monday by The Bangles, and anything from the Mama Mia soundtrack. She loves I Love Lucy, The Golden Girls, The Office, The Backyardigans and most especially The Simpsons. She’s a true night owl, but has no problem getting up for school. She adores Wesley, but can’t wait to get a cat. She’s the best big sister ever, but also loves bugging Kohen and Ellie. She’s athletic and competitive, but also happy being a couch potato. She’s not at all scared to speak her mind and throw shade, but hates to disappoint us. She absolutely gives some of the best advice I’ve heard, but is also so young for her age. She enjoys a good comic book/graphic novel and watching Teen Titans Go. She’s a great cook with a very mature palette, but appreciates a good bowl of Top Ramen. She hates crafts, bugs, birds, and the sound of people chewing. All in all she’s amazing and absolutely necessary in this world! She’s got big dreams and I have no doubt given the opportunity she’ll make them all come true.
We’re having a drive by parade on Monday at 4 pm. If you’d like to come and help us celebrate our amazing fighter please send me a message so I can give you the details. As always we welcome and appreciate your prayers. We hope you’re all staying healthy and making the best of this quarantine situation!
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.