Prayers For Paisley Rae

Sorry Cancer you still CANNOT have her!!!! 3 years and we are celebrating being in her CANCER FREE ERA!!! GOD IS SOOO GOOD!!

Hi everyone! We know we haven't updated in a LONG time so we figured we were due for a long update! we like to go by the saying "no news is good news". Since turning 3 so many good things have happened! Paisley is now a little "threenager" as we Like to say she has grown up in such a short time! She Loves: Taylor Swift,asking questions, cracking jokes and playing with her big brother. She's a girly girl so she loves doing makeup, getting her nails done and loves to cook and bake anything under the sun especially cookies and cupcakes! She is still a little ballerina and will be in her first recital this spring! She's playing soccer still and is looking forward to joining all new activities and sports this next year.

She had an eventful fall and winter! Recently we linked up with an amazing organization called
Kisses for Kyle Foundation who absolutely SPOILED HER as well as all of their families involved with them . If you have a moment please check out their page and consider donating as they graciously and selflessly help sooo many families affected by cancer.

Kisses for Kyle allowed Paisley as well as 42 other kiddos be a part of the fearless 43 which included meeting all of the Philadelphia union team and go out on the field at halftime as they were celebrated by the entire stadium. It was one of the most emotional moments we have ever witnessed

This years Christmas was probably the best we have ever had . Paisley's favorite thing to do at Christmas time is look at different light . We got to go to a variety of drive through light shows and partake in winter activities: Kisses for Kyle once again was amazing offering various holiday activities and linking up with another of our absolute favorite companies Minnie's Magical Moments donating their time and characters so that oncology families could meet Santa, Mrs. Clause as well as Mickey and Minnie Mouse privately. All of the kids were so excited and families were so appreciative.

She had the best summer ever living down we the shore in Brigantine and is patiently waiting for the nice weather to hit so she can get to the beach all day again soon!
She will also be starting SCHOOL next year!
If you would've asked us if this was our future a few years ago we could never have even imagined it!

As far as her health, she still remains immunocompromised so she tends to get sick a lot , mostly continuous cold like symptoms however she always remains upbeat. She still gets her infusions to help boost her immune system and she's learning to attempting to walk while it's going which makes things a lot more "normal" for her . We recently found that her vision in her right eye (the one that had cancer behind it) has significantly decreased so the team recommends her now wearing glasses 24/7 (still working on that adjustment). she also has some dental issues due to the chemotherapy and abundant oral steroids she received when she was younger. Yes sometimes it hurts because it seems the effects of cancer will continue to linger for years to come BUT these issues are minimal compared to what we could potentially be facing so we will absolutely take these minor setbacks and run with it.
Next Tuesday, Paisley wil return to CHOP for her THREE year CART check up. She will meet with her oncologist and immunologist to see where she's at. Of course we pray for the best news possible but we know it is out of our hands but we always hold Our faith over fear! We know she's got this and that God has her.
We promise to keep you all updated and apologize it took so long to update , we know it was way overdue. We appreciate every single one of you for all the continued love thoughts and prayers.
"PrayersforPaisleyRae # FaithOverFear

Paisley Rae is Three and Cancer Free!!
Apologies for the delayed response but it takes a while for certain lab results to generate back to us. As of now Paisley's Labs look amazing! She still has a little over 9% B cells but overall the team isn't concerned. She will have to continue with her weekly infusions due to the fact that the B cells that her body is generating are still not functional. Overall this is the best news we could ask for.
In other news Paisley recently turned 3!! She celebrated by having a beach bash with her little crew and our amazing family and friends. I remember when Paisley was first diagnosed and we knew our odd were less then 20% we were so depressed and anxious. One of the drs said to us one day Paisley Rae's going to be 3 years running up and down these halls . I've held onto that comment for three years and just feel so incredibly grateful that it became true!! From the outside she is your typical toddler, Full of energy, Growing and thriving living life to the fullest. She is a total beach bum along with Paxton it their absolute favorite place to be.
She is still doing dance and will start a few new classes as well as some other sports in the fall. It's amazing to continue to see her live a relatively normal life. We are so grateful that we are blessed with our baby girl everyday. God is so good. Thank you all for continuing to stay and support us 🤍.

Big day today!! Other updates to come but today Paisley is back at CHOP for her "28 month" CAR-T cell / oncology check up. Please pray for her to continue to be cancer free and healthy as can be!!

It has been some time since we've updated we know. The truth is we just wanted to live life "away" from the mentality of the cancer world. We wanted to just be a family doing normal daily activities .
Paisley is still doing dance 🩰 which she is obsessed with. She asks everyday if she can go to dance class again. She also has become quite the artist loving to color and create crafts whenever she can . She has really started to grow into her own big personality while speaking so well. Her and Paxton have began the typical sibling rivalry where they fight, yet love each other to no end which is a blast to see.
We soaked up every moment of the holidays 🎅🏻 🌲. Enjoyed doing all The activities. Enjoyed being home . Enjoyed being all together . Fell in love with just "being" in a sense. It has been a dream of pushing all the trauma that the cancer life held into our subconscious where it can no longer keep a hold on you, yet It's only a matter of time until you don't have a choice but face your fears .
Next week we go back for a labs with the CART team for her two year check Up. Last update we posted the result of Paisley's B cells jumping to 12.5%. Needless to say there's a lot of anxiety walking into this next appointment . We unfortunately have seen two of our fellow CAR-T warriors relapse just this past week both being over a year out from their infusion. So the stakes and emotions are at an all time high.

In the meantime while we have enjoyed "normal" life there are certain factors that leave us with deep concerns. Paisley has had some minor issues. We also know it could be normal toddler issues or late side effects due to treatments she received young. Paisley received more chemo in her first 6 months than adults diagnosed with cancer do throughout their life. We would be lying if our minds didn't go off the deep end and assume The worst of the situation.

*But Then, While driving I asked my brother for a sign and a few minutes later "Rainbow by Kasey Musgraves started to play in my car- a song he has sent us since the very beginning (we hadn't heard of the song prior to that). It is truly incredible knowing this little girl has guardian angels looking over her . 💫
We promise to update as soon as we know anything. In the meantime Please pray for the families of our friends who are once again preparing for battle against the ugliness of this disease . We know the power of prayer can do amazing things .
Thank you .

I know many have been waiting to hear Paisley’s results and we appreciate everyone’s love and support.

Overall the visit on Monday went well. Paisley saw her onco team including her bestie (her nurse Meredith) As well as immunology. The preliminary lab results didn’t look concerning so we were able to leave and get the rest of results later. We knew last visit Paisleys b cells had some “small” return with 1.5% b cells.

On Wednesday we received a call from
The team saying Paisleys B cell count has now jumped to 12.5%. Obviously we prayed for a miracle that Paisleys B cells would somehow decrease, or even just a slight increase would leave us satisfied, but that just wasn’t in the cards.

With such a high jump we now definitively know that the car T cells are no longer circulating within her body. In a nutshell it means two things:
A.)Her body can recover possibly grow into a new immune system if all of these B cells remain healthy
B.) No more T cells means she no longer has that protection — if her body is able to to make B cells then there is the always the chance her body will Produce the cancerous cells as well. Right now our team is NOT concerned. Some Patients just recover b cells quickly and the cancer never comes back. They are hopeful that because we had B cells aplasia for 12 + months that we are in an okay spot to hold Tight and just watch what happens .

So what’s next? More close monitoring and waiting with blood work and just seeing what Paisley’s body does - after all this is what a clinical trial is about. It truly is so fearful to be entering into a place that is completely unknown , unsure of what lies ahead of us.

We would be lying if we didn’t say hearing the amount of B cells Paisley now has didn’t leave us upset. I know my husband and I both just felt this utter heaviness as we sat in silence after hanging up with the team, both vigorously googling research on B cell return post immunotherapy. You can’t help but digress and then go through every detail of her body All over again - “Wait she recently has a lot of bruises on her legs is that normal? She’s also really cranky and tired today what’s going on. does she look super pale? Is there a lump on her skull again? “ Constantly thinking about the what ifs and when will it come back.

Then we realized we need to focus on the what IS right now. We thought about others who weren’t as fortunate as us to have CART work for this long and would do anything to be in our position. So we are focusing solely how lucky we are that she remains cancer free. If we continue to spend all our time worrying about the future then how can we truly enjoy each moment of the present, and what a beautiful life is it right now with this amazing baby girl living it to the fullest.

We will be making the most of this holiday together and we hope the same for all
Of you. We will update again if anything new pops up. Thank you for all of the continued love, support, and prayers .

Hi friends! I know it’s been a while and we are so thankful for all of the support we have continued to receive since our last post.. We have gotten many messages checking in since we have not posted so for that we sincere apologize . If we are being totally transparent we needed to take a mental health break after the news of Paisley’s B cells returning and just live life trying not to let Cancer be a part of our vocabulary. So we shoved the topic in the back of our brains and just lived life everyday as normal as we could.

Paisley has really come into her own personality. She speaks so well and loves to run around and wrestle her big brother, telling him “I love you” laughing as she has him in a headlock. She is sweet and sassy at the same time 🤍. She has also taken on the role of little mama to our dog Bella - from feeding, walking, playing catch and morning snuggles- the two of them are basically inseparable. Recently she’s been battling an upper respiratory infection but overall doing well.

We go back to CHOP Tomorrow ! It would be a lie to say that the anxiety hasn’t already started to set in. We know that will B cell return it also has given the chance for the cancer to return with a vengeance, but we cannot let the fear take over or come above our faith. This battle is tough but Paisley is tougher.

With the upcoming holiday it is a time we are especially thankful to be home together as a family. We are trying to make the most out of everyday because every moment counts. We remember what it’s like to be split up from your loved ones at such a crushing time so we’ve been working on giving back to those affected by cancer leaving families separated during the holidays .

Whenever I feel anxious I like to watch this video from over the summer. We woke up super early one morning and took Paisley and Bella to the dog beach in the jeep and her genuine reaction is everything. We will update as we know any results.

Faith
——— 🎗🙏🤍
Fear

September update:
Since we learned about Paisleys B cell return we have had a lot going on and have been very busy so we apologize for the lack of updates.

First: we spent a lot of September focused on childhood cancer awareness.
The weekend after we visited CHOP was actually the Emily Whitehead Foundation’s immunotherapy ball. For those that don’t know, Emily Whitehead was patient zero when it came to pediatric CAR T cell therapy. They had no idea initially if it was going to work and weren’t sure if she was going to survive after the infusion but they didn’t have any other options. Today, here she stands 10 years later happy, strong, healthy and most importantly still cancer free. After recovering she decided along with her parents to begin a foundation to help share their story and spread awareness about the amazing things CAR T cell therapy can do.

Each year they hold a “purple tie affair ball” in order to celebrate the families that have been effected with this immunotherapy. They had amazing welcome bags with items inside personalized items for Paxton and Paisley waiting when we arrived. The evening was incredible full of inspiring stories, opportunities to make new friends, dancing , fundraising and celebrating all that is possible. During this even we have found out that we are not alone in having B cell return post therapy. We discovered other families who went through what we have and their children are still cancer free today which was so hopeful to hear. Also due to all over the support the foundation was able to raise over $300,000 .

On September 25 we participated in CHOP’s Conquer Childhood Cancer Walk.
So many tears were shed both happy and sad to see just how many people and children are affected by this diagnosis and this is just the greater Philadelphia region. We even got to run into some of our favorite nurses!! These ladies took amazing care of Paisley when she was inpatient at the hospital, treating us all like family for which we are so incredibly grateful. Seeing them was truly heartwarming!!

CHOP was able to raise over $2 Million Dollars in donations. Also, last month our dear friends’ lost their daughter due to this terrible disease but they were able to raise over $90,000 in her honor of her. How incredible is that?! THANK YOU ALL for either joining /donating to our team or any team for this walk. It means EVERYTHING to us knowing that any and all money raised gets directly donated to the CHOP research center so that they may continue to find cures for children.

I know we haven’t updated as much as before but being totally transparent, we’ve been a little down and out. We watched two of our friends’ lose their children to leukemia within the last two months which was absolutely devastating. Our hearts break for them today and everyday and we constantly pray for all of their healing. After finding out about Paisley’s B cell return we couldn’t help but get that “waiting for the other shoe to drop feeling” but we have to keep relying on faith and hope that time is on our side and that her cancer stays at bay. We have to live in the moment and appreciate every single day for our friends and their families


We have some other things to update on but we will wait until we have all the information to share. In the meantime enjoy some of our September moments caught on camera including our little ballerina starting dance class with her best friend.

Thank you for staying with us. We love and appreciate you all so much

9/15/22: Paisley had quite a rough start to her week. She came to CHOP to get her 18 month labs done for the immunotherapy. Unfortunately there was some issues getting enough blood for the labs needed so Paisley had to get poked a few times. She is also so incredibly strong it took 3 adults to hold her down to be able to get the labs done. We also received the results of the labs that same night.. I wish to be writing this post with continued fabulous perfect updates regarding Paisley’s immunotherapy treatment but unfortunately we didn’t get the news we were hoping for this time around.

This month, September seems to continue to be a period of time consumed by cancer every year.

For starters, September 24,2020 is the day Paisley was initially diagnosed at CHOP. This September would’ve marked the end of treatment had Paisley continued down the chemotherapy only route.

September 17, 2021 is when we saw the rise in Paisley’s B cells and started to have conversations of early B cell return which led us to her reinfusion of T cells in November and again in January.

Now September 12, 2022 we learned that once again Paisley’s B cells are coming back, this time faster and higher then before.

If you remember last month upon checking Paisleys labs they saw a rise in her B cells from 0% to 0.6%. One month later her B cells have now almost tripled and are now 1.5%.

We knew this was a possibility due to the results of last months testing but it was still very hard to hear, we were hoping and praying so hard that her T cells would persist. To break it down simply, if Paisley’s body is able to make B cells then that means that the CAR T cells are no longer working and are dying off. Paisleys’s cancer is of her Cd19 which are a type of B cell. With her body making B cells again it gives the opportunity for the cancer to return.

HOWEVER We are VERY fortunate to be in the best place for this situation. We got to sit down with team at CHOP who know Car T cell therapy better then anyone else. THANKFULLY Paisleys blood counts currently are not concerning and seems to be trending the right direction with her body making healthy full grown B cells and not the blasts from cancer cells.

Because of this, They are confident that right now we do not need to move forward with any other interventions other then watch and continue to monitor closely. Just because the B cells are coming back does not necessarily mean that her cancer will come back. We know that infant leukemia does not follow normal protocols and is very aggressive but going off other information, the chances of relapse greatly decrease after having the CAR T Cells within the body for at least 6 months. We are now 17.5 months out so we pray this was enough time to keep the cancer at bay but we will be heading back to chop to see both The CART drs and her primary oncologists regularly so that everyone can keep a good eye on what’s going on in her body.

In a picture perfect world, her cancer will stay away, she will recover all her healthy B cells, leading her body to regain a normal, strong, immune system. This would also mean being able to stop the Hizentra infusions and be able to get vaccinated in the future. We have to try to find the positives and hope and pray that maybe this is an incredible blessing in disguise.

This month is Childrens Cancer Awareness Month. Now more then ever we are determined to help raise awareness and funds for children’s cancer research. If Paisley didn’t try this clinical trial of immunotherapy I’m not sure what her future would have been ; If she would have honestly even be here today. Looking back two years ago we had to have some very unsettling conversations and we weren’t sure that we would be able to have these days with our Sassy strong beautiful two year old daughter. Every single day is a blessing not to be taken for granted.

Lucky for us we had an amazing team who treat us like their own and put us into this trial for research purposes, but research needs money to be able to move forward, they need support from their communities,

This year on Sunday September 25, CHOP’s 2k walk to conquer cancer is finally IN PERSON again!! We are so grateful for all of Paisley’s doctors, nurses and researchers that help us have our baby girl with us today. If anyone wants to walk with us / donate towards our team for CHOP here is the link for the walk!

https://chop.donordrive.com/index.cfm?fuseaction=donorDrive.team&teamID=12070

Update 9/1/2022: To keep it simple: Paisley is doing great! She has been going back and forth to CHOP to have her chest port incision checked as it seems it’s not healing as quick and well as we would like but the team thinks it just may need a little extra time and TLC.
She also had a small amount of B cells show up on her last lab draw … as of now the team isn’t concerned . What we hope is that this is just some Cells the engineered T cells haven’t gotten to yet and she will go back on September 12 to have them Rechecked. We hope and pray for No B cells showing up so that we know the immunotherapy is continually working 🙏

🤍Today is September 1st it marks the first day of Childhood Cancer Awareness Month. If you ever wanted to make a difference regarding this issue NOW is the time.
🤍September 24 marks two years since diagnosis and last September is when her B cells started to return. We hope To make this September a fresh start!
🤍CHOPs annual Run/ Walk for cancer is Sunday September 25, IN PERSON this year!

Please consider joining us as we fight to conquer cancer . We will be doing the family fun 2k walk. If you would like to walk with us or donate: We just registered a team here :

https://chop.donordrive.com/index.cfm?fuseaction=donorDrive.team&teamID=12070

Pictured: Pax got a little tour of inside the Hospital this past week during visits. He saw where we lived when we were inpatient. the picture on the right is outside the windows from The oncology floor. The last time we were in this spot Pax was on the outside and Paisley was on the inside separated for months. Felt so incredibly grateful to capture this moment of having them both on the outside together 🤍

Update: 8/4/2022
Paisley has been continuing to enjoy this summer!
Homecare has been great thus far but we still have some hospital trips for the next few weeks. Paisley still receives her immunoglobulin every few days which is essentially a boost to her immune system- giving her antibodies from donors since the car T cells take away any of Her own. This medication she receives now doesn’t go through her chest port rather goes into the fatty tissue underneath her skin. If it gets knocked out of place due to movement (let’s face it she’s a toddler with a needle in her leg) it can leak out causing burning of her skin which can be very painful. There’s also the possibility that because the medication is full of antibodies not coming from Paisley’s own body acute allergic reactions can occur. she did have a few bumps while Receiving the infusion the first two times but we were able to save ourselves a trip To the ER with some at home interventions. She always develops golfball sized swelling at the infusion site that lasts about two days jr other then that Paisley has been doing extremely well and we are so thankful. People always comment that you would never know what she has been through because she is so energetic and full of life and we love hearing that!!
A few fun updates : paisley was officially baptized in front of friends and family recently and then was able to celebrate her turning 2!! The day was HOT over 100 degree weather and still soo many people came to show support and it was so amazing to witness. We are so grateful for the endless love and support our family receives.

🐕 Also our family has recently grown by 4 (paws that is). For those that don’t already know our family previously had a dog named Bruiser when Paisley was born. A gentle giant full of love who absolutely adored Pax and Paisley. He was constantly watching over both. He would always stand with his head overtop of Paisley’s. We swear that maybe he knew something was wrong.
💔 When we were told we needed to Move inpatient for 8 Months we tried our best to give him the care he needed but it wasn’t enough as he was still a young himself. Thankfully another family Offered to watch over him and fell In love themselves. We knew it was best for him to stay there and continue to get the love and 24/7 attention he deserved.
💔Our hearts were broken and we all had a void especially Paxton who didn’t understand what was going on. We are fortunate enough that the family still sends us pictures. Our boy really looks so happy so we feel at peace with our decision but we STILL miss him so much but we wanted to wait for the right time to add another member to the gang.
🐾 We decided it was time and started looking and while we weren’t exactly ready (it was a week of Chaos preparing for Paisley’s baptism/birthday party) this adorable puppy fell into our laps and we have now found our missing puzzle piece - Bella. We rescued Bella and we couldn’t be any happier to have her here. The kids love taking care of her whether it be feeding, Walking, going to the vet, or training her . She is so incredible sweet and gentle with the kids and they absolutely adore her. She’s even a little beach bum Just like them 🐕

Thank you everyone for the sweetest birthday wishes We had the best day ever! Thank you so much No Nap Creations for this AMAZING Smash cake we are obsessed!!

No news is good news and we have all good updates:
🤍First Paisleys Chest port removal is healing well! She calls her scar her Boo Boo but doesn’t seem bothered by it. Hopefully the stitches will dissolve soon.
🤍We are now trialing doing her infusions through her skin for a few hours a week instead of into her veins so hopefully a bit less invasive. The plan is to switch her to home care which will mean less hospital time 🤞🏻
🤍The whole family got to come to clinic with Paisley this week! Paxton says Paisley’s doctors & nurses are awesome and he enjoyed being able to come spend the day with her. She did have some kind of initial reaction to the medication which caused her great discomfort but he was right there to help distract her by any means necessary including dancing. Best big brother ever 🥰
🤍Little Mama got her ears pierced!!! Small step to many but for us this is something fun and Normal we have been waiting for! We got the okay from the doctors and she did AMAZING. We didn’t tell them about her background at all and at the end they commented how physically strong she is we just laughed and said we know. Thank you Poseidon Piercing and Ink for being so amazing !!
🤍 Finally Paisleys Birthday is today!!! She is officially 2 years old!! Words seriously cannot express how grateful we are to be able to stand here today and celebrate our daughter as she turns another year older. Every single day is a blessing. Thank you for continuing to support and love our family daily. It means everything.

Quick update : Surgery went perfect and Paisley is home recovering but feeling great!!! Thank you All! God is soo good 🙏🙏🙏

It’s a good day today!!! Paisley gets her chest port removed today !! We didn’t know if and when this day would ever come so we are so excited!! Paxton gave her his iron man for a safe surgery 🥹🥹🥹. Of course Paisley needed to wear her rain boots. Praying for a speedy, safe surgery-and quick recovery for this little warrior. Thank you All 🤍🤍🤍

Update: 6/21/2022
We wanted to wait until everything was 100% definite but since they are we are excited to say that Paisley is officially getting her chest port (or as Paxton calls it “Sissy’s Iron Man”) taken out this week!
What is a chest port? It is a small, round device placed under the skin that is connected to a catheter that is guided into a large vein that empties into the heart. It is how Paisley has received every medication, transfusion and lab work comes from.
It is also a huge risk for life threatening infections since the catheter leads right into the heart. When Paisley spikes any kind of fever it automatically lands us inpatient in the hospital for a treatment plan. She has had this chest port in place since she was 10 weeks old it has been a part of her for the majority of her life. It has delivered the life saving cells to her body so it definitely feels a bit bittersweet that it’s coming out.
We are also speaking with the team about transferring her infusions to home-care and spacing out appointments. They also said unless something concerning shows up in her lab work, they won’t be doing any more bone marrow biopsies or spinal taps!!! To this date she has had more then 18 bone marrow and biopsies done and has been sedated countless times. Now, No more pain for our baby girl!!!
To the outside world this may not seem that big of a deal but to us it’s EVERYTHING. These are All steps closer to “normalcy”. We are so excited for our girl !
Thank you again to all That have been there for us, and who continue to support us. We made it to this day because of you!! Praise be to God