Tomorrow my first little bit turns 16. I still can’t believe it, I swear a close my eyes and she’s still the little red faced baby we brought home. Though the years have flown by they’ve left such sweet memories and so much love. With each year she teaches me so much about life, love, and faith. Since she was born she’s been leading and guiding me and I am so much better because of it. As we approach her 16th birthday the one word I can come up to truly express how I’m feeling is grateful. I am so eternally grateful for her and for the blessing of another year.
Though her day will be spent at Hopkins and our celebration will be small it will be full of love and joy.
To my sweet Ava- I love you more than you will ever know. I’m so grateful God trusted me with your care. I’ve truly never met anyone like you. Your fiery spirit, sassy personality, and unique perspective are just what we need. I love you big, AJ.
This verse from Ecclesiastes is one of my favorites. I still remember when my Aunt Vilma read and explained it to me back when I was in 9th grade. For the last 16 months I feel like we’ve been in season of hibernation. I’m sure most of the world feels like this, but for our party of 6 it’s been a little different. We’ve been fearing not one, but two illnesses. I think part of the reason we’ve been so careful on the COVID front is because it’s one that feels within our control. There’s no amount of hand washing, social distancing, or vaccine that can prevent relapse, so focusing on COVID has been easier for us.
However, last months results have given us some peace and we’re slowly coming out of our hibernation mind frame. I think it’s finally our season to heal. For me it’s about mental healing. I’m sure I’ve written about the PTSD that comes with a cancer diagnosis in the past, but I’m not sure I’ll ever be able to explain how it can grip you and change you. For the last two years I’ve been scared of making plans and whenever I do I always add, if anything happens with Ava I may need to bail. Since our one stint in the PICU I plan and prep all my lessons like I may have to be out because of a hospital stay. But I’m finally feeling ready to relax a little. I’m ready to contemplate Ava getting her license, taking family vacations, and settling to life without fear.
Today Ava had her monthly labs check-in with Dr. Molina and before Kev had even gotten the through the word vaccination he was telling us to go, to book it, to live. He went through all her labs and everything looks great. He told us Ava’s next scheduled BMA is in late December early January 2022. He told us to make her 16 year checkup with our beloved pediatrician Dr. Scheibel. He said unless her body tells us otherwise she’s good. Friends, I’ll tell you the truth, not fixating on that unless will be so hard, but I’m so ready to move into our next season of healing and living. I’m going to trust God and the science He empowered us to create. I’m going to believe she is really healed.
I took my faith a step further booked our summer vacations. Breckenridge here we come! Next we’re looking for drivers ed classes so AJ can get her license this summer. As many of you know she will turn 16 on May 4th. So this blogs may look a little different from here on out. A little less posting, a little more mundane, but also a lot more peaceful. Well as peaceful as life with 16 , 13 , and 11 year olds can be.
Thank you for praying for Ava and for us during our season in the Poopy Place. Your prayers mean so, so much! We hope you continue to pray for her as we begin a new journey and find new adventures.
I hope you’re all doing well. I know it’s been a long time since it’s our last post, but as they say no news is good news. We’ve been blessed with health during this latest stretch of quarantine life. For us staying healthy means not doing much outside the house in order to minimize exposure. So basically we’re all very bored, but grateful we’ve been privileged enough to keep ourselves healthy.
AJ, Kohen, and Ellie are all doing well in school and plan to finish the school year virtually. My class is amazing and giving their all during virtual instruction. They make it a lot of fun and doable. I’m still not sure when I’ll be going back this school year, but when the time comes I’m trusting God to keep my girl safe. Kev and my mom are already setting up protocols for what needs to happen if and when I go back.
Last week Ava had her monthly check up and we learned that she still has no B-cells. This is so encouraging and causes so much hope for her leukemia still being gone. Dr. Molina seems to be very optimistic. She has her BMA tomorrow and in his words it’s a big day. I actually debated sharing any of this because I didn’t want to jinx it, but then I remember y’all have been with us throughout this journey so I feel comfortable sharing.
Dr. Molina feels if the BMA shows her marrow is clear Ava may be moved to yearly BMAs and go back to the care of her pediatrician. She would still go for her monthly B-cell check and potential IVIG infusion, but no more. I’m sure you can imagine how huge this would be for her and for us. There’s little reason to think this won’t be the case, but my mama heart always carries a little what if and fear in it. In order to check my fears I’ll be praying the St. Bakhita novena for Ava and Ailani. Many of you may remember Ailani’s story from prior posts. She also has a BMA this week so Princecine and I decided to start this novena for our girls. If you’re interested in joining us we’d really appreciate it.
AJ and I head to Hopkins early tomorrow morning. I stopped by Sunday Morning Bakehouse today to pickup a couple yummy treats for her to enjoy post procedure to make it a little extra special. This afternoon I found her already enjoying some of them.
Please keep us in you’re prayers as we begin the waiting and praying for results. ❤️❤️
Miracles do happen! My girl is proof of this. Her doctors told us to prepare for transplant after this BMA but GOD! Her amazing Dr. Molina told me they were all happily shocked. I cannot accurately express my joy in words, but I will say thanks to everyone who has prayed for my Ava and our family. Thanks for being part of Ava’s Squad. Ava is super excited to know she will be able to return for 2nd semester of 10th grade. Kohen and Ellie are overjoyed that we will be home for their birthdays. Kev and I feel like we can breathe and plan past December. Today is the best day ever!! #cartparty #notoriousajg #avassquad
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.