About a month and a half into Ava’s diagnosis she was admitted to the PICU with gram negative sepsis. It was one of the most terrifying experiences, ever. One of the first people to come visit her was Loren. She sat with Ava and just chatted. After this PICU visit, Ava was so week she had to start PR to regain her strength and balance for walking. We talked about how Loren had done the same and how just a month before she had put her body through a grueling race for kids like Ava. She inspired us both, especially since she is also childhood cancer survivor. You know that saying about those who make it out of hell and turn to help those still in it? That’s Loren.
She and Tom do so much with Stillbrave Childhood Cancer Foundation. For example, when the pandemic hit and we were hunting for sanitizer, Clorox wipes, and masks. Tom reached out to us to see what we needed. A few days later we had a shipment at our doorstep with all the supplies and then some. When you’re going through the unimaginable it’s comforting to know you’re not alone. It’s even more comforting to have people who get it by your side. People like Loren and Tom.
Today Loren begins the Moab 240 honoring and remembering 240 childhood cancer kids. Ava is mile 177. Please, please consider donating. Your donation will help Stillbrave continue being there for families during the unimaginable.
This evening as Ava was packing her lunch she turned to me and said “things are looking up for Ava.” Yes they are baby girl, yes they are!
Even though COVID-19 has impacted much of our lives and dampened some of our plans we still had a pretty great summer. Our trip to the beach with our cousins was the perfect bookend to a lovely relaxing summer spent mostly outdoors.
Just two years I ago I remember sitting across from her team and asking for help because she was so down and depressed. She shared that missing back to school season was making her so sad. I remember how my heart broke when she said we were all leaving her behind. Missing freshman and sophomore years of high school has not been easy, but it’s made her return to school much sweeter!
We have so much to be thankful for and so much to pray for. As we all return to school amid the Delta surge, we pray that our kids and all kids can stay safe. We ask that Ava gets a full year of school and all the stuff that goes along with it.
We also pray for our sweet friends Ailani and Jade who are both undergoing bone marrow transplants. I’ll be sure to post more about their journeys in my Childhood Cancer Awareness Month post in September. For now I just ask that you keep them and all those fighting in your prayers. May things look up for them soon as well.
Yesterday we reminded Ava today would mark two years of her leukemia diagnosis, her cancerversary. She hooted and told us she wanted smoothies and eggs Benny to celebrate. Ellie looked at her like she was nuts and said why would you want to celebrate that?! Who celebrates getting leukemia? Wouldn’t you rather celebrate the day it went away, like your CAR-T day? Ava told her that she was celebrating the diagnosis because it led to her cure. She was celebrating still being here two years later. She was celebrating feeling amazing. She also added that she would celebrate her CAR-T day and any other day she pleased because she could. She is alive. Kevin and I are celebrating those exact things as well.
It’s hard to believe that just 24 months ago we were headed to Hopkins hoping we’d get answers for our girl and dreading what we knew those answers would bring. Never could I have imagined what the next two years would lead too.
Ava is now a healthy 16 year old attending drivers ed and getting ready to enter 11th grade. She’s completed two full years of virtual learning and is on track to graduate with her classmates. When she was first diagnosed she told us all she wanted was a kitten for her Make-A-Wish. We asked Dr. Molina if that was okay and he told her to wait until she was 16. I think he was trying to buy us time in hopes she’d change her mind. While she still hasn’t had her MAW granted she did get a kitten for her bday.
During a recent trip to Breckenridge, CO she broke down while climbing a mountain and was sure she couldn’t do it. Kev and I were shocked that she was letting a trail get to her like that. We reminded her of all she’s been through and overcome and while we’re pumping her up she made it to the reservoir. I don’t think she understood how proud I was of her in that moment. To her it was conquering a fear of falling. To me is conquering that 35% chance she had.
In a prior entry I told y’all we were getting ready to start living our lives and rejoicing instead of living in fear. Our trip to the mountains of Colorado was just what we needed to get started. It was amazing. We did so much living and encountered so much to rejoice over. We experienced new adventures that created a different kind of fear, a good kind.
Ava will spend the rest of her summer taking classes, driving, drivers ed and spending lots of time with Winnie and Wesley. She will go in for IVIg on Thursday and then hopefully move onto visits every 3-6 months.
As always we’d appreciate you’re prayers for thanksgiving and continued health. In addition we ask that you also keep the rest of the 11 South July 2019 crew in your prayers. These warriors are all in different points in their journeys and can use all our prayers. Zoey is doing well and nearing the end of her treatment. Elena is undergoing surgery today for a broken internal leg brace in her femur. I can only imagine how her family is coping with that on the anniversary of her diagnosis. We especially ask that you keep Ailani and Jade in your prayers as they move forward towards transplant.
Today was our last visit with our amazing Dr. Molina. He has completed his fellowship at Johns Hopkins and is most likely moving to the Cleveland Clinic. To say it’s bittersweet is an understatement. Dr. Molina was the one who confirmed Ava’s leukemia diagnosis and then sat with me as I cried all alone. He has answered all my questions, emails, and calls. He’s never become impatient and always stayed positive. He’s somehow managed to tell it to me straight and while keeping me encouraged and hopeful. Clinic appointments will not be the same without him. Thankfully the leukemia team is considering moving her to 3 or 6 month appointments.
The 12th will be Ava’s 2 year Cancer-versary. She’s come so far and I’m sure it’s because God placed Dr. Molina in our path. We waited 7 months for her diagnosis, but somehow we managed to squeak in during Dr. Molina’s last weekend taking new patients. These last two years have been better because he’s been caring for our girl. All I can do is wish him well and pray for those he treats next. I’m confident God has amazing plans for Dr. Molina.
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.