Anthony 11/7/10-1/17/21
On Sunday 8/20/2017 my son Anthony had 2 random swollen lymphnodes on each side of his jaw. He had no other symptoms prior to that. I decided to take him to JFK hospital thinking maybe its just a strep throat or a really bad sore throat. I never knew our lives would forever change.
The Dr. said she would most likely recommend antibiotics and send him home since he looked fine other than the swollen glands. She suggested to do an X-ray just in case she has to drain them before we leave.
The X-ray came back a bit abnormal so she ordered blood work. After about 30 minutes, I received the worst news that any parent can receive. She took me to a separate room and as tears rolled down her face she said "I'm so sorry to have to tell you this. But Anthony's white blood count is 140,000. He has some kind of cancer." As those words came out of her mouth I felt as if someone sliced my chest open and completely ripped my heart out. I've never experienced such pain in my whole body at once.
We were transferred immediately to St. Mary’s Children's Hospital where they did further testing and by Tuesday morning we were given the diagnosis that Anthony has Acute Lymphoblastic Leukemia. A couple of days later we found out it was a rare form of leukemia called Near Haploid ALL. They don’t have a treatment for him since its very rare.
I still can't believe it. I feel that maybe just maybe I will wake up tomorrow and say oh my god what a horrible dream that was and go on with our normal lives. But no this nightmare is still happening. Cancer is attacking my baby who is only 6 years old????? How could this be? He's too innocent and little to have something so ugly attack him.
I always read other stories and never in a million years would have believed if someone told me your son will have cancer. But this disease attacks ANYONE. No matter who you are.
I know that God is holding our hands every step of the way and will let us see him turn into an amazing young man one day. Maybe he will even become a DR. and save other lives.
Anthony loves Pokemon and like the theme song says:
" Every challenge along the way
With courage I will face
I will battle every day
To claim my rightful place
Come with me, the time is right
There's no better team
Arm in arm we'll win the fight"
March 26, 2020
Anthony’s Cancer which had gone into remission returned. His mom Celeste posts:
"Anthony’s leukemia is back. Without getting into all of the scientific details they found 98% leukemia cells in his blood. We are starting relapse treatment as soon as we receive the chemotherapy this afternoon. This treatment has 3 long INTENSE parts and the 3rd part would be a bone marrow transplant being that he makes it into remission on day 29 of the first part. If he doesn’t we would be transferring to St. Jude’s for Car T Cell Therapy. They will be sending out Nicolas’s blood to see if he’s a match for his bone marrow transplant. We are going to be inpatient for the next 29 day’s of the first phase since he’s at risk for infections, complications etc.
This journey isn’t going to be easy but we are thankful for his amazing Oncologist. It makes it easier to see that we have so many options to beat this leukemia again.
We are trying hard to be positive and stay positive. I won’t ever understand why Anthony was chosen for this brutal/hard journey but all we can do is lean on God and trust that there is a purpose for this?"
April 1, 2020
Anthony’s not feeling good today. He’s feeling sick and sleeping is the only time he gets some relief. I was able to get him to eat his breakfast and do some school work earlier but he wanted to get back into bed as soon as he was done.
One of his assignments was to write in his journal about anything that he wants. This is what he wrote:
“I feel that I’m a little scared. But people are sending me gifts and that’s making me happy. I’m getting a little better everyday and trying to stay well.”
April 17, 2020
Yesterday was the last day of chemotherapy for the first phase of relapse treatment. Now we wait for day 29 and pray that once they test, Anthony is back into remission (5% or less leukemia blast). 🏼
Also let’s pray that his counts start to recover now that his body will have a break. His platelets dropped so he’s receiving a transfusion right now while he plays with his brother and cousins on FaceTime.
I’m running on 3 1/2 hours of sleep and have no idea how I’m functioning ... hopefully I can sleep tonight.
Highlights:
*He’s slowly regaining a bit of strength to walk and stand. (Thankful for physical and occupational therapy)
*He’s eating way more!
April 30, 2020
His counts are slowly going up! Today his ANC is 100. Unfortunately, even if we make it above 500 we will not be able to go home because it’s such a high risk for any complications etc. Anthony’s scheduled for a lumbar puncture with chemo into the spine on Monday morning but other than that we will be hanging out in the hospital until we are transferred.
We are scheduled to leave to St. Jude’s on May 9th (one day before Nicolas and my birthday). Due to Covid they aren’t allowing more than 1 parent or siblings arrive with the patients. Totally sad about that but we have to do what we have to do. This is a big change but this could potentially “cure” Anthony and allow him to live a long healthy life. I allowed myself to feel my emotions and cry for one day. Now I’m back to my survival mode and keeping myself occupied which makes days easier.
May 6, 2020
The Palm Beach County Sheriff Office surprised Anthony with a send off parade at the hospital with so many officers, and a few beautiful horses. Anthony was deputized as a PBC Sheriff. Due to Covid, it is only Anthony and his mom who will be able to go to St. Jude for the time being. The Sheriff and several police departments all showed up today, May 9th and escorted Anthony to the airport. We are all sending positive thoughts and prayers for a safe journey and successful remission.
May 31st
Update from Mom, Celeste— "I haven’t had the energy to post these last couple of days.. sorry! Here’s an update.
We were moved into our long-term housing “Target House” (thank you Target for this beautiful place!) and we’re loving it here. So nice to have our own place with a full kitchen!
Anthony is still dealing with so many side effects from the chemotherapy. He experiences fatigue, dizziness, exhaustion, nausea, stomach pain, and just weak almost constantly. They have changed his nausea meds and I feel like its been a bit more tolerable for him. I’ve had to take him everywhere in his wheelchair because he can’t walk much without feeling like he’s going to pass out and his legs are going to give out. He spends a lot of time in bed on his tablet or sleeping.
One of the new nausea meds is also an appetite stimulant. He’s hungry ALL the time. But he isn’t able to eat a regular-sized meal because it makes him so sick. So I’ve been cooking him small amounts of food or snacks literally every single hour. Anytime he craves fast food he’s bummed because he can’t finish it all but as long as he gets those couple of bites and that moment of happiness that’s all that matters. We also make scandi milkshakes which is used for weight gain to make sure he doesn’t lose too much weight or nutrients in his body.
Unfortunately, we can’t get rid of these side effects because the chemotherapy he’s on has to be taken every single day for 28 days. So as long as we keep the side effects tolerable enough for him we can hopefully get through these 28 days a bit easier.
This journey has always been tough but being away from our family has made it that much tougher."
July 3, 2020
Yesterday night we were admitted to the transplant floor. We are prepping Anthony for the Car T Cell Infusion he’s receiving next week on the 7th. This is the treatment we came to St. Jude for. It’s nerve wrecking that the week is finally here. One step closer to hopefully reaching a cure and going back to our lives. Throughout these 5 days he’ll receive certain medications and chemotherapy’s to prep him for Car T Cell. Today he will receive a chemotherapy called Fludarabine. He’s never received this one before but it’s supposed to be a very mild one that kids don’t really have any issues with.
Car T Cell Therapy has a different reaction in every single patient that has received this infusion. The top side effects one may experience in the 5-7 day mark after infusion is confusion/memory loss, Cytokine Release Syndrome (flu like symptoms and can affect his organs), fevers, low blood pressure, and fast heart rate. Because every patient is different the transplant team works closely with the ICU team throughout this process to monitor and treat any side effect Anthony may have. So for some of these he may end up needing to go to ICU to be treated.
The team told us to plan for a 3 week stay but it can always be shorter or longer. All depends on how he reacts to this infusion.
This amazing boy of mine continues to smile and be positive.. he never ceases to amaze me.❣️
#AnthonyStrong #FightTogether #NearHaploid
August 8th
We are beyond devastated. We are heartbroken. We are sick to our stomachs. Car T Cell Therapy didn’t work for Anthony. His leukemia is too aggressive and too smart. This means we can’t continue with our original bone marrow transplant plan because it won’t work for him. I wish we had answers but not even the Drs can explain why this advanced treatment didn’t work. I mean we know his leukemia is rare but we also had hope that this would work. His Oncologist explained that we MIGHT have 2 treatment options but the chances of that working for his type of leukemia is slim to none (less than 5% to be exact). We have spoken as a family and Anthony knows what’s going on. His Dr explained that we have to think and talk about his quality of life in the time that we may have left with him. We’ve spent the day crying and in total disbelief. We are holding on to hope and Faith but we are also being realistic...with understanding the fact that this may be it for treatment options. We meet with his Dr this week to speak about things to try and decide what the best option is for him. In the meantime we will make his gamer dream room a reality and try to make him the happiest he can be. Our 9 year old son shouldn’t have to be making a “Bucket List” at the age of 9. This shouldn’t be happening.
In this moment please just pray. Pray for Anthony. Pray for us as a family.
August 12, 2020
We spoke to Anthony’s oncologist yesterday. There is a lot going on right now and I’m going to try my best to explain in details to where everyone can understand. We were given 2 options. These 2 options are experimental and at this point the percentages wouldn’t even be applied since were trying things to see if it can possibly work for him. This is scary for us... We want to make the best decision possible for Anthony. He’s still physically able to fight so we have decided on one of the options.
When he was at St. Jude he was on a trial chemotherapy called “Venetoclax” the first month. It did decrease the amount of leukemia cells in his body significantly but it didn’t get him to 0%. St. Jude offered to try that same exact course of treatment (without enrolling in the trial again) for a month at their facility. Because of COVID St. Jude will not allow our family to stay at their housing together so we would have to move and rent a home nearby out of pocket. Obviously we refuse to split up our family again. We were mentally preparing to move our family to Memphis TN but then his oncologist there called to let us know that we can possibly have this treatment here at home. This experimental drug isn’t FDA approved so it’s very difficult nearly impossible to get it approved by insurance. If this drug isn’t approved we have to pay out of pocket which can be up to $15,000 for a month supply. We are waiting to hear back from his oncologist to see if by a miracle my insurance can approve this experimental drug if not we will cross that bridge when it gets here.
Of course we (including Anthony) have decided that if we do this we prefer to do it locally together VS going back to St. Jude. We will do whatever we need to to continue fighting and keeping our family together. Anthony needs the comfort of being in his own home with his doggy’s who are his life.
September 24, 2020
It’s been a ROUGH day for Anthony.
Somehow during the line placement surgery the blood vessels in his right eye and both eyelids burst. The nurse said it’s nothing to worry about and hopefully goes away soon. The lab confirmed that they had what they needed so we will be leaving around 2am.
The first time we collected cells it was a smooth process. This second time around Anthony experienced excruciating pain that was almost unbearable at the end. He’s been on morphine all day but it didn’t seem to do anything for him. When it was time for line removal he screamed and cried (while he squeezed both of my hands super tight) like never before from the pain he felt. This was so traumatizing for both of us.
Afterwards as he cried he asked “Why do we have to keep doing treatments? I hate this. I hate how everything we do is painful or makes me sick! Why can’t we just stop and I can die?”. It fucking BROKE MY HEART and I broke down in TEARS. If you know me you know I NEVER cry in front of Anthony but that felt like a stab in the heart and I couldn’t hold the tears back. I had to explain why we keep putting him through this hell. I had to tell him that we don’t want to lose him. We want more time with him. We want to keep fighting for him to live.
I hate this for him. I wish we didn’t have to make him suffer. I wish we didn’t have to put him through this. This isn’t right.
December 15, 2020
Our hearts are hurting today. We received the results of Thursday’s biopsy results and it showed that he has 99% leukemia blasts in his bone marrow. We knew it would be high but I was hoping for no more than 60% and that was way too high in my opinion. We have the Car T Cell Infusion tomorrow and I’m SCARED/WORRIED. We tried so hard with all of these chemotherapy’s before hand to get the leukemia percentage down but it didn’t seem to work. His leukemia is so aggressive and smart. I hate it. I wish there was more we can do before the infusion tomorrow. Going in with this much leukemia is TERRIFYING because the CRS can kill him. As much as it hurts us and how risky this trial is we have no other choice but to try and fight as much as we can. I had to hold my tears back when he was awake because I can’t show him the fear in my eyes. As soon as he fell asleep the tears rolled out. How I wish I could scream and cry out to God right now. 🥺
Nuestros corazones están sufriendo hoy. Recibimos los resultados de la biopsia del jueves y mostró que tiene 99% de blastos de leucemia en la médula ósea. Sabíamos que sería alto, pero yo esperaba no más del 60% y eso era demasiado alto en mi opinión. Mañana tenemos la infusión de células T y estoy ASUSTADA / PREOCUPADA. Intentamos mucho con todas estas quimioterapias de antemano para reducir el porcentaje de leucemia, pero no pareció funcionar. Su leucemia es tan agresiva e inteligente. Lo odio. Ojalá pudiéramos hacer más antes de la infusión de mañana. Entrar con tanta leucemia es aterrador. Por mucho que nos duela y lo arriesgado que es esta prueba, no tenemos otra opción que intentar luchar tanto como podamos. Tuve que contener mis lágrimas cuando estaba despierto porque no puedo mostrarle el miedo en mis ojos. Tan pronto como se quedó dormido, las lágrimas brotaron. Cómo desearía poder gritar y clamar a Dios ahora mismo. 🥺
I don’t even know where to start...
The trial failed. It’s no longer working. The leukemia blasts are back and they are strong. There’s nothing else the Drs can do for us treatment wise. We’re devastated and heartbroken. I wish this was a bad nightmare. We’re working on a lot the next couple of days with arranging a plan to get home ASAP and start palliative care.
I HATE cancer.
Following a failed trial at CHOP and terrible news from his last bone marrow Anthony is now home on hospice with a 10-14 day timeframe given from his specialist.
His wish is for everyone to subscribe to his YouTube channel!
Our beautiful, loving, brave and strong gamer earned his wings today at 12:15. He is no longer in pain. He is no longer in a fight with cancer. He fought hard for 3 1/2 years until his very last breathe today. Anthony was 10 years old and lived a whole lifetime in so little time. He made sure to always look at the brighter side and live his life doing ONLY what made him happy. Keith and I held him tight until he officially went home with Jesus.
Our hearts are completely broken but knowing that he’s happy and free from cancer gives us peace. He is now the famous Youtuber “BonnieZgamerrYT” in heaven playing in his awesome gamer house with his new friends! We will never understand why cancer chose Anthony but I’m thankful that we were chosen to be his family... that I was chosen to be his mommy. He was my first love and my best friend. I don’t know how we will continue life without him but together as a family we will try hard every single day. We want to keep his memory alive forever and make him proud. Rest In Peace my beautiful Angel .
Thank you to everyone who has supported us in this journey. We truly appreciate all of you!
I would do ANYTHING to have you back but I know that wouldn’t be fair on you. You were the one dealing with the severe nausea, stomach pain, invasive procedures, constant health complications, chemotherapy, anxiety, gross meds, and so many other daily horrible side effects. It wasn’t right, it wasn’t fair on you and it was very traumatic. How I wish I could have saved you from the pain, suffering and saved you overall. You fought so damn hard and always found something to smile about. Because that’s how AMAZING you were.
It should have been me, I should have gone first. Not you! But cancer didn’t care about your age and who you were. Cancer didn’t care that you had a whole life to live. Cancer didn’t care that you wanted to grow up and live in a big house with 100 rescue dogs because you lived animals more than humans (lol). Cancer didn’t care that you wanted to be a big brother and be there for Nicolas when he needs you the most. Cancer didn’t care that you wanted to one day be strong enough to hang out with your best friends like a normal kid. Cancer didn’t care that you wanted more time and sleepovers at grandmas house who you love SO dearly. Cancer didn’t care that you were looking forward to being a game developer. Cancer didn’t care that you planned to take care of your dad and I when we got too old one day. Cancer didn’t care that you didn’t want to die and you just wanted to simply LIVE. Cancer didn’t care that our hearts would forever be broken.
I truly hate childhood cancer. It’s a horrible monster and it continues to kill our babies EVERYDAY!!! Cancer is real. Cancer robs innocent children and babies of their precious lives. This is hard to hear but it’s a reality for so many of us. I now belong to a childhood cancer bereaved group that has over 3,000 members. This can’t be normal. This can’t be okay. 🤯
#BonnieZgamerrYT