Waiting and not knowing is a funny thing. When you’re actively waiting for news you’re wishing time would hurry up. Then as the time for news gets closer you wish you had just a little more time in case the news doesn’t go the way you want. Or at least this is what waiting is like for me. Here’s a quick update or where we are.
Most of last week was good. My mind has been in a positive place. The news she still has no B-cells and that she is still Flow Negative was so encouraging. I was convinced we’d get results yesterday so the anxiety amped up on Saturday night. But crickets. I thought I had figured out Dr. Molina’s patterns and it was safe to go to bed after 10:30. Not. When I woke up this morning Kev told me Dr. Molina had emailed around midnight to request pretransplant labs. We still don’t have results, but they want to get Ava in for labs to make sure she doesn’t have some mutation. So tomorrow Kev and Ava will be heading to Hopkins for a blood draw. We had a long talk with Dr. Molina today and he has assured me they will consider all the things before deciding to go to transplant. That makes me feel better, but not as much as getting the all clear will.
The wait is coming to end and soon we will know. I praying for clear marrow and no need for transplant. I realize it’s not the end of the world if we do need it, but I’m still hoping and praying she is spared. Thanks for all your prayers.
While I would never wish a leukemia diagnosis on a child or anyone for our family it turned out to be a blessing. And definitely I’m not saying I’m grateful Ava had to endure of this for us to reach this point. I actually carry a lot of guilt that she had to go through this for us to get here. What I am saying is that purely by the grace of God, this horrible diagnosis didn’t break us. It actually brought us closer. I’ve spoken to my mom about this a lot. Our marriage has never been stronger. My kids have never been closer. We have never been so faithful or close to the Lord. We now know those who are true friends and those who not up for the task of loving a cancer family.
So much good has come out of such a horrible thing and I’m so scared to lose that. I believe the main reason we were able to come out better is because we did it together. We were all included in Ava’s treatment. Ellie and Kohen spent a lot of time and the hospital and clinic with her. Though they weren’t physically going through it they were involved and they were included. Last year when we had to spend Christmas in patient, my entire family came to have dinner with us on Christmas Eve, all the cousins were there. On Christmas morning all of Kevin’s family was there to celebrate with us. Ava says it was the best Christmas ever. Actually, we’ve never alone in this journey. Many of you visited us and spent time with us at Hopkins or at home. You brought us meals, purchased gift card and prayed for us the entire time. Maybe that’s just life before COVID-19?
This is what has me most terrified as we prepare for the possibility of doing it all again. A bone marrow transplant during COVID-19 would mean only one of us could be with Ava. For the first 30 days inpatient and the next 70 in Baltimore only two of us will be there. As I understand it she would need to be within a certain number of miles for the first 100 days. Our house is outside that limit so Ava and I would basically move to Baltimore for a little over three months. Kev would probably not be able to visit much because he couldn’t expose her to covid germs. This means we’d miss Ellie’s birthday and Kohen’s birthday. Ava would be away from her dad, siblings, and grandparents for 3 months. Kohen and Ellie would be away from their mother and sister. I would be away from two my kids and husband. Transplant during COVID 19 will take away what made treatment bearable the first time.
In my core I know God can take any situation and make it beautiful. I’m fully aware He can take anything and make it a blessing, but I’m still scared. I’m scared I won’t be up for the task. I’m scared for my family. More than anything though I’m scared for my girl. Although we got the great news that her CAR-T cells are still hanging around and preventing her from having B-cells her oncologist fear the genetics of her cancer has changed and CAR-T is no longer an effective treatment, leaving us with transplant as the next step. There is so much riding on tomorrow’s bone marrow aspiration. Depending on the results we could go one way or another. I’m trying my hardest not to be what my friend Porsche’s sweet father taught is called Worst Case Scenario Person, WCSP, but y’all the struggle is hard. I’m praying so hard and fighting it so much but the fear that lives in that worst case scenario situation is so real.
I use to think the loss of a child was the worst thing ever. I know if God takes a child they go straight to Heaven. I feel certain of that. What parent would be grudge that? No the ultimate tragedy is losing a child and not going with them. Knowing you have no option, but to continue life without them. That is the true hell. That is the fear I carry with me. That’s why I fear transplant so much. I’ve read too many stories of parents living my nightmare. I follow so many cancer parents who are at this moment are so close to living my worst nightmare. So instead of asking you for prayers for my girl I ask that you pray for these heartbreakingly young warriors.
Tomorrow Ava and Kevin will head to Hopkins for her monthly IVIg and labs. Within a couple of days, we’ll learn if her CAR-T cells are still doing their job and keeping away her B-cells. Then next Monday, we will go in for her 12-month bone marrow aspiration and lumbar puncture. It’s a big one. Depending on those results, we will know if she has had any bone marrow changes and if she will be headed to a bone marrow transplant. It feels as if I’m walking around, holding my breath. Until we get those results, I won’t be able to exhale. The Lord has been by my side this past month. He’s been able to keep me focused on the day, sometimes the hour, and kept my anxiety at bay. Now more than ever, though, I pray for his guidance and peace; as I’ve discussed so many times before, the uncertainty is killer. The feeling of helplessness is demoralizing and can consume me in an instant.
I try my best to live in the present. I’m sure Ava gets annoyed by how often I look at her. Annoyed by how often I ask, “are you feeling okay?”. I know she’s tired of me continually touching her arm or forehead to check for fevers. All to ease my anxiety and remind myself she’s doing so well. It’s beyond my understanding that even though she looks so good, feels so good, and looks so strong, there could be malignancy going on deep inside her bone marrow. Her giggles, her laugh, her joy makes it so hard to believe that in a month, we could be completely depleting her immune system and risking her life to save her. It’s hard, friends. Frankly, it’s unbelievable. And yet, here we are.
On December 7, 2019 we learned Ava would need to have CAR-T over Christmas. On Christmas Eve no less. And now a year later, she will be going back to have a BMA that will decide where we go next.
The timing, she received her CAR-T on Christmas Eve and the fact she went in and had her original team with her means something to me. That thrill of hope I held on to last year is what I’m clinging to once again this year. The knowledge that no matter what God has her, has us, and has her doctors is my constant mantra.
We’d love your prayers for no B cells, no leukemia cells, and more than anything a healthy Ava that doesn’t require a BMT. And if you have an extra prayer for my mama’s heart, I’d love it.
Sorry for the cursing, but it’s hard to not given how things are.
This is still a mess in my head, so please forgive me if I’m not making sense. Ava’s latest BMA showed a slight increase in abnormal activity, so we’ve been told to mentally prepare for her getting a bone marrow transplant. They’re concerned because this time, there was an increase in the leukemia sequence. It’s still below zero and not countable, but there’s something abnormal. Thankfully her CAR-T cells are still hanging around, so we get some more time to figure things out. The plan, for now, is to do another BMA in 6 weeks and make a decision based on those results.
They don’t know if the abnormalities are part of her primordial DNA and will always be there, if it’s disease that the car-t is still working on clearing, or if it is a relapse. Since this next Gen sequence is their newest and most sensitive test, they can’t type the cells to see if they’re leukemia or not. Her oncologist said if they were to wait until they could type them, it might be too late, so they would rather make the decision when she’s strongest and best able to handle the bone marrow transplant. If her car-t cells are still hanging around next when they do her BMA and her BMA shows no increase in activity or even a decrease, they would continue to monitor and wait. If they do the test in 6 weeks and there is an increase in activity, they will do a transplant after the holidays.
I can’t say we’re entirely blindsided, but we’re bummed. In my heart, I’ve always felt CAR-T would be her cure, and it hurts like hell to sit with the knowledge my hope and faith wasn’t right. Over the last 24 hours, I wondered what I did wrong and how come my amazing child has to go through this. Was I not grateful enough? Should we have prayed more? Were we wrong by not going to mass? The second-guessing is killer.
Over the last couple of hours, I’ve come to realize that maybe this is her cure. The doctors told us over and over that CAR-T hasn’t failed her. It may be just what was needed to bridge her to transplant. They said that if she does go to transplant, she’s going on super strong and with a whole lot less chemo than other ALL patients.
Ava is doing well. She handled the news in true Ava style. She listened, didn’t ask any questions, and then came home and made dinner. Today she woke up and went to the dentist for a filling. In true badass fashion, sister got her cavity filled without local or laughing gas. This child never ceases to amaze me.
Of course, I’m still praying that CAR-T has cured her and that the next BMA results will show no change or an improvement so she can avoid transplant; that’s my most desired wish. But I am also praying that God gives her oncology team and us the strength and faith to trust Him, His plan, and His timing. So please lift our amazing fighter and us in prayer. We could use them.
It’s been a while since I updated. We’ve been waiting for Ava’s 9-month BMA results for the last two weeks. Waiting suck, but we finally got them today. I wish I could explain exactly what they show, but I can’t because, as usual, our girl does her own thing and no one knows exactly how to read it. Basically, there’s a “blip”. This blip is less than one and doesn’t have all the codes of her leukemia, BUT it’s not 0, and it’s flagging as possibly abnormal. Her doctors don’t feel it’s a return disease and are highly encouraged because her CAR-T cells are still doing their job but they’re annoyed it’s not zero. So they’ve ordered another BMA for the end of this month to continue to track her. While they’re not comfortable saying she’s in the clear and won’t need to go to transplant they’re also not rushing to say she will need one. Are you finding this clear as mud? Me too. I’ve already gotten sick twice since talking to Dr. Molina and am fighting my anxiety but I’m also sitting here looking at this fierce strong young badass next to me feeling like whatever this is she’s got it. As usual though we welcome all your prayers as we ride the wave of this “blip”.
The Guishard Gang has had a busy month. Kev was hard at work on some projects with his team and preparing to a make a move close to home. I’ve been teaching summer school and doing some work with the teacher’s union. Ava has been taking health and Spanish classes. Kohen took four summer school classes offered by his new middle school and finished on Friday. Ellie also took some summer school classes and went back to gymnastics. She is so happy to be back in the gym. We are so happy she has somewhere safe to go during this pandemic. In addition the kids decided to open their own business and have been baking cookies to sell to the neighbors and friends.
In someways it’s felt normal. We’ve been flying high on the the news that Ava’s leukemia was gone and trying our best to focus on living life like we use to. But the truth is childhood cancer doesn’t work that way. I’ve come to realize it’s not something you can leave behind, ever. Over the last month two of Ava’s Hopkins peers have passed away. Since the last post the world lost Mo Gaba. Ava and Kev got to know Mo when they would to to clinic weekly. His passing and Ailani’s relapse have hit us hard. We’ve realized the fear of relapse is real.
As most of you know Ava is a badass who rarely breaks down. She’s always trying to take care of us. She is rarely vulnerable or shares her feelings because she hates to worry me. However, last night she had a sinus headache or a migraine and she finally let me into her thoughts and fears. She’s not oblivious, she knows the cancer could come back. She’s seeing it happen to her dear friends. She is carrying the guilt of feeling good and the fear that any ache or pain is leukemia. She carries this at the tender age of 15. I don’t know how she does it because I’m carrying the same fears at 41 and lately it feels like I’m drowning. Holding her last night I wanted so badly to tell her she didn’t need to be afraid, that the leukemia was gone for good. But I couldn’t. All I could do was assure her that no matter what she would have us by her side. I reminded her that prayer was always there and she should hold onto her faith when she is most scared. I reminded her that we’re all basically living on a prayer and God always hears our prayers.
On Tuesday she has her monthly clinic appointment for IVIg. I think they will also check to see if her B cells are still gone. As usual we ask for your prayers and healthy vibes. We want those CAR-T cells to still be doing their job and that the IVIg doesn’t cause her the headaches she’s been having after them.
Here are some links I’d like to share. Through these links you’ll have the opportunity to hear from sweet, Mo. Learn how you can be the hero Ailani needs. You’ll also have the opportunity to donate to Ava mile on the Moab 240 that Stillbrave’s Tattoo Tom is doing this fall. In addition the kids are donating 1/2 the proceeds from their August cookie sales to pediatric cancer. So if you want to order some yummy chocolate chip cookies and help in the childhood cancer fight let us know.
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!