March 28th- After being discharged from the hospital for 5 days, we were back in clinic to see if Lola’s counts were good and if we could start interim maintenance 1. We were supposed to start this cycle the first week of March, but with her low counts we were on a 3 week hold. Her body just needed time to rest and recover from the prior cycle.
Ellora made count today with an ANC of 1800!!! It was 320 just 5 days ago when we were discharged. Her body really got the chance to catch up and get stronger! She started IM1 which consists of 2 chemo drugs she’s had before in her previous cycles, but this time it’s all through her port back to back. She’s always received Vincristine through her port and Methotrexate through the spine, but now both drugs are pushed through her port in the clinic. We monitored her and made sure she didn’t have any trouble with the process and she flew through it with flying colors!
My sweet sweet Lola is the bravest, but it hurts my heart every time she cries or tells us how scared she is. She loves her friends at the hospital, but she hates what happens to her. Me too; mommy hurts it the most!😭
My baby comes out victorious every time and she continues to show us just how strong she really is!!! 😭♥️She’s stronger than me for sure! Here’s to the start of cycle 3 of this chemo journey. Please be good to my baby girl.
#lolastrong #blolastrong #fightlolafight #childhoodcancer #childhoodcancerawareness #childhoodcancerwarriors #childhoodcancersucks #mylittlewarrior #lifeasacancermom #childhoodleukemia
Hi everyone!!! Today, March 28th, is the last day to sponsor a brave gown for the children at Lola’s hospital! We are so thankful for all the love and support. Our baby girl is blessed to have so many social media grandmas, grandpas, aunties, and uncles who love her. 🥹♥️
By sponsoring a brave gown, you’re gifting a child comfort during their hospital stay. The regular hospital gowns are itchy with a not so breathable material. Lola always cried about how hot she was in it and about how itchy she was. Since receiving a brave gown, she’s felt a lot happier during her hospital stay. There are so many fun styles and characters to choose from.
https://www.bravegowns.com/products/lola-strong
Every child is a super hero & deserves to feel special and comfortable while they fight for their lives in the hospital!!
#lolastrong #blolastrong #fightlolafight #childhoodcancer #childhoodcancerawareness #childhoodcancersucks #childhoodleukemia #childhoodcancerwarriors #mylittlewarrior #bravegown
March 23rd- Mommy, daddy, & Lola woke up to pray and do some positive affirmations in hopes that it would grant us the ok to go home! The oncologist came in our room and told us Lola’s ANC level was 320 and he was comfortable with us being discharged today!! Yayyyyyyyy!!! Lola’s counts met the minimum requirements to be able to go home. Thank you Jesus! 🙌🏼
While we were waiting to be discharged, Lola met two new little buddies in the playroom. They were also there battling cancer. We got to meet the parents of the two little ones too and got to share each other’s stories. It’s honestly so heartwarming when you get to relate to other parents, but it’s also so so sad. We were reminded that we are not alone in our journey, but sadly we were also reminded that childhood cancer is more common than we think it is. One of Lola‘s friend is battling AML and her other buddy has brain cancer. Such strong little boys, Lola was in love and did not want to leave the hospital because her friends were still there.
We had to convince her that she’d eventually see them again and that they could play hide and seek with eggs again soon. That was the only way we could get her to go home lol. 😂
We are so thankful to be leaving the hospital with our cheerful, healthy (despite cancer), sweet and spicy little chicken wing! ☺️♥️✌🏼a full 7 days in and we are got of here!
#lolastrong #blolastrong #fightlolafight #childhoodcancer #childhoodcancerawareness #childhoodcancersucks #childhoodcancerwarriors #childhoodleukemia #childhoodcancersupport #mylittlewarrior
Sometimes I wonder how life would have been if Ellora didn’t have cancer. How it would feel to be able to go out publicly and have little adventures with them. How it would be to dress them up like twins and take them shopping.
I never imagined life being cooped up in quarantine, feeling sluggish, but my mind pacing at 100mph. I don’t want to keep them housebound, but I’m in constant fear that Lola could catch something if we take her out.
For now, this is life. Not the life we imagined, but it’s our life for the now and that’s totally ok. We thank God for the breath in our lungs, for the treatment that is healing my baby, for our friends and family, and for our faith. It will get better. LOLA WILL GET BETTER! And we’ll have all the time to have little adventures together soon. No matter what…mommy is here!
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#lolastrong #blolastrong #childhoodcancer #childhoodcancerawareness #childhoodcancersucks #childhoodleukemia #childhoodleukemiaawareness #lolasarmy
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March 29th- Today started off like any other day. Lola woke up and ate breakfast, played dress up, went outside to pose and model her rain boots, played with baby sister, and watched her Bluey shows. She showed no signs of feeling sick…although she was quite moody and fussy most of the day. That was probably because she wasn’t feeling well. I noticed her cheeks turning bright red in the evening, but I was in denial and didn’t want to even think about her starting to have a fever. I gave her a bath and let her play in it til her little heart was content. She was little mermaid with a purple tail and blue hair.🧜🏼♀️ *I just love her imagination for a 2 yr old!* I pulled her out and did our normal bedtime routine. She was heating up in my arms and I quickly took her temp which lit up 101.6. At this point, it was 11pm. I called her oncologist and he stated since her ANC was 1800 the day before, she should be ok, give her Tylenol and monitor her, if her fever doesn’t go away then call him back. We gave her Tylenol and wiped her body down. She cooled down for awhile and fell asleep. When I woke up at 6am to check on her, she piled up to 102 and I immediately called her oncologist. He told us to get her in and that he’d have our room ready for us. Let me tell you, when I say we have our emergency bags ready at all times, it’s for times like this! Even when we have our bags packed, we’re still scrambling around to collect all other necessities for the hospital stay cuz we just never know how long we will be stuck there. Packing a 4 month old and a fussy 2 yr old and trying to keep calm is a true talent, one that I hope to have one day lol. 🤦🏻♀️🥹😵💫We dropped Klaira off with my parents and drove 45 mins straight to the hospital. How we wish we could take baby sister too, but the hospital is no place for babies that tiny in case she catches anything from all the nasty germs flying around. I was so rustrated at the situation an
April 1st- We got word from our doctor today that we were free to go home at 6pm as long as she continued to be fever free! Her blood counts came back good and all her cultures and tests continued to be negative after 48 hrs. Lola must have caught a virus that wasn’t tested for.
Lola and daddy held a talent show to kill time and Lola totally rocked that stage lol.
We are so thankful to finally be going home again and hopefully staying home with no more hospital stays! Thank you Jesus for our strong, sassy, life-loving, spunky baby girl! ♥️🥹
#lolastrong #fightlolafight #childhoodcancer #childhoodleukemiaawareness #childhoodcancerawareness #childhoodcancersucks #childhoodcancersupport #childhoodleukemia #godisstillgood
March 31st- we got to celebrate Easter today with our medical family. Lola knows that Easter is all about Jesus and about how he wakes up and goes to heaven. It’s not just about a cute Easter bunny hiding pretty eggs for us to find.
I will always make sure that my girls know what the true meaning of every holiday is. Jesus is risen. Jesus is king. Jesus is healing Lola of her cancer. May the Lord always find favor in my love, and keep her in the palm of his hands.
We are so thankful for our medical family at the hospital. It makes our stay more bearable. When the staff come in, It’s like family visiting us. Every time we have to stay at the hospital, Lola looks for her friends and knows exactly who they are. They make her feel more comfortable, and they make her smile.
unfortunately, hospital stays will always be hard no matter what. Lola hates showering during her hospital stays. Her port is accessed the whole time so we have to cover the area up with a plastic shield and tape. This process is very uncomfortable for her and she screams and kicks every time. There are some nights where Pheng and I have to just take a minute to breathe, it gets heated lol. Once she is upset about showering, then everything else on the night routine is just as bad.
We hope that the hospital stays will end, or at least there will be way less of these. We love our medical family, but we like to love them from a distance lol.
#Lolastrong #blolastrong #fightlolafight #childhoodcancer #childhoodcancersucks🎗 #childhoodcancerawareness #childhoodcancerwarriors #childhoodleukemia #childhoodleukemiaawareness #jesusisrisen
We are starting tonight‘s bedtime routine with a cute mermaid book and a mermaid swimsuit outfit for bathtime. Lola got a cute book from an internet friend of ours about a little mermaid named Lola. Lola the mermaid received a bracelet of courage from her dad then lost it when she went swimming with her friends. The book shows Lola meeting a dolphin, some sea urchins, and a jellyfish who all taught her that the courage she was looking for was within herself.
Lola loved the book and loved the fact that Lolo the mermaid had the same tail as she did! Thank you to our friends who sent this book to us. Hopefully this will teach Lola how to continue to be strong in all situations and to understand that bravery & courage comes from within herself. ♥️
stay tuned for part two and see what happens after reading time!
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#lolastrong #blolastrong #fightlolafight #childhoodcancer #childhoodcancerwarrior #childhoodcancerawareness #childhoodcancersucks🎗 #childhoodleukemiaawareness #childhoodleukemia #mylittlewarrior #cancermomlife #littlemermaid #bedtimeroutine #childhoodcanceradvocate
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April 8th- Today was another chemo day. Lola woke up crying because she already knew where we were going. She said she didn’t want to go see her friends. Then after putting on her purple dress she said she can’t wait to see her friends at the clinic. Lol.
During this phase, cycle 3 (interim maintenance 1), the medical team monitors her blood count to see whether they will increase the doses or keep it as is. Technically Lola should be increasing her dose every 10 days for chemo, but if her counts come back low, the dose remains the same. It’s all part of her chemo protocol. Some children are more sensitive to the drugs and can’t take much of it, some children increase with each chemo session. Today Lola’s ANC was 1500 which means she gets an increased dose. It’s reassuring and scary at the same time. It just makes me SO SICK knowing that more poison is being pumped into my baby in order to get rid of the deadly disease in her!!! 😭😖
She took it like a champ, like she always does, and we were out of the clinic within an hour. We headed to grab some goodies before heading home. Luckily there was no one in the cafe, so Lola and daddy joined me and she had a blast dancing around while waiting for our food. The owner of the cafe was kind to gift Lola a few extra goodies to take home. She was so excited!
We are still in the thick of all this chaos and are taking it minute by minute, but we are thankful that the Lord has helped us to come out victorious in all the obstacles so far. Lola is resilient. She is brave and strong. God is before, behind, and beside us. Her fight is our fight and we will persevere!!! ♥️🙏🏼
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#lolastrong #fightlolafight #childhoodcancer #childhoodcancerawareness #childhoodcancersucks #childhoodcanceradvocate #childhoodcancerwarriors #childhoodleukemia #chi
One of Lola’s favorite things to do is bake with her auntie Lexi. Today they chose yellow cake with chocolate and vanilla frosting. Oh, and we can’t forget the sprinkles!!! 🩷
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#lolastrong #fightlolafight #childhoodcancer #childhoodcancersucks #childhoodcancerwarriors #childhoodcancerawareness #childhoodleukemiaawareness #childhoodleukemia #godisstillgood
Found these clips on my phone earlier today and I just sat in my car and cried. I’m sharing this so people can be more aware of to what these drugs (steroids) do to our babies. This was during Lola’s 1st phase, induction, one of the toughest, if not the toughest phase through out this whole treatment. She had to be on dexamethasone aka steroids aka the hangry drug for 28 days straight. We didn’t comprehend the depth of the medical staff’s warning that she’d be abit irritable and hungry.
She was good the first week and a half, but when the side effects creeped in, it came at full force. She went from happy to hungry and demanding for food right away. There was no way of getting her mind off of food. She’d eat and then 5,10 mins later beg for more food because she was hungry. She didn’t eat small portions at a time either, she ate what a grown adult would eat in one sitting. And she did that over and over again. She craved salty, greasy food and wouldn’t eat the “healthy” options. Lola would wake up in the middle of the night screaming for spaghetti, noodles, and chicken nuggets with ketchup.
It was the scariest thing to see your child turn into a completely different person right before your eyes. Literally, we would wake up and she’d look different everyday! She gained 11 pounds in those 3 weeks since the drugs kicked in. We cried all the time because she was angry, she was confused why we would limit her eating sometimes, she was aggressive, and she was gaining so much weight that it was effecting her health and ability to walk. Not only was the chemo kicking her bad, the steroids were an evil necessity for her body and it caused so much trauma in the midst of all the other traumas she was facing.
Steroids are necessary in helping a cancer patient’s body to reduce inflammation, prevent any allergy reactions to chemo, reduces nausea, helps improve appetite, etc…
We were 3 weeks into chemo treatment at this point and Lola’s hair was
This was a conversation I had with Lola while getting her ready for bed. I initially was trying to capture our conversation talking about Easter, Jesus, and celebrating Easter with her cousins, but then she started asking me if she still had cancer…😓 I got to say, she definitely took me by surprise and I almost didn’t know how to answer everything she was asking or referring to. 😣
I was amazed that she remembered it was her blood that carried the cancer and that we needed to fight it to get better. I was also shocked when she asked me who gave her cancer. She answered her own question…😶 my 2 yr old shouldn’t be knowing about these things. It’s just not normal, but it’s become the norm in our world. We’ve told her a while back that the devil gave her cancer and that it wasn’t God who gave it to her. We reminded her that the devil does bad things, but that Jesus will help her fight cancer away for good! (Where there is good, there is also evil. We know that the Lord did not give this to her, but he fighting alongside her & using her as a living testimony. The devil preys hard, but we PRAY HARDER.)
When I look back at this clip, I should have reminded her that her body was made perfectly by God and that the cancer in her blood doesn’t mean her body is bad. Her body is strong & is doing every thing to beat this cancer and soon she’ll be cancer free. When I look at her little hands beating on her chest trying to “fight cancer and fight the bad blood,” I see my little innocent warrior displaying her strength and awareness of her condition. 😓🥹♥️It breaks my heart, but at the same time makes me so proud of the bravery that burns within her. I can see it in her eyes. She’s our little fighter! This is a big part of what will get her through this.
We know that she’s got this in the bag. Cancer is running away with fear. Her story will be one of many childhood cancer stories that point glory to God and shows the world of his mir
Part 2 of our mermaid night! Bath time consisted of watching The Little Mermaid with some magnesium epsom salt for a relaxing time. She loves singing “Part of Your World” and “Kiss the Girl.”
The things that come out of my baby’s mouth amaze me all the time. She knows exactly what her doctor does when he comes in to see her…listen to her heart and push on her stomach lol. That’s right my smart baby girl. It’s definitely bittersweet though, a 2 year old shouldn’t be used to that stuff. 😓 She shouldn’t be knowing the words: port, mic key button, chemo, zofran, needle, access, numbing cream…
My Lola is so sassy, so spunky, so brave, so resilient, so innocent! God is protecting her during this battle. She’s kicking cancer’s butt to the curb and soon all of this will just become a nightmare of the past.
#lolastrong #blolastrong #childhoodcancer #childrenfightingcancer #childhoodcancersucks🎗 #childhoodcancerwarrior #childhoodcancerawareness #childhoodcancersurvivor #mylittlewarrior
Lola and I went through bags of her old baby clothes to find some for baby sissy. I wanted to record this so I could capture all of Lola’s reaction to her old clothes. I didn’t think it would be so triggering for me to see and touch all those clothing Lola use to wear. All the thoughts of, “wow, she used to be so small!” to, “she wore those when we went to the zoo and she was so so healthy and happy!” They all came rushing in and it was overwhelming having those flashbacks. I could literally close my eyes and replay those memories over in my head, but it just made me cry more than anything.
It’s a confusing place to be in. You’re grieving, in a sense, the child and childhood of that child that was technically lost because of cancer, but yet you’re so grateful because she’s still there with you fighting for her life everyday. It’s a weird feeling to try to come to terms with. I’m remembering all the care free times we had with each outfit I pull out. I told my husband that I didn’t think I’d be so sad & emotional…it just creeped in suddenly. This emotion comes and goes at random times and is triggered by some of the simplest things.😭 This is one of the many emotions parents of childhood cancer have to face on the daily because of the trauma we live with. We have to help our babies fight their own traumas everyday while navigating our own.
Lola, on the other hand, had a blast picking her old clothes out for her sister. She wanted her sister to wear everything even if it wasn’t in season lol. She said she use to be a baby, but now Klaira is the baby and she’s a big girl now. I still call her my baby. She’ll always be my baby. 🥹😭🩷
#lolastrong #childhoodcancer #childhoodcancerawareness #childhoodcancersucks #childhoodcancerwarriors #mylittlewarrior #childhoodleukemia #iweargoldformydaughter #cancermomlife #childhoodleukemiaawareness #traumahealing
April 18- Today was another round of chemotherapy for Lola. During this phase of treatment, she either has her doses increased or remaining the same depending on her ANC level and her platelets. Today her ANC was 2200 which was great, but her platelets were 77 and the cut off was 75. Her oncologist recommended we remain at the same dose as last week.
Lola still hates getting her port accessed (who doesn’t). But it’s always a treat when she gets to transfer her blood into the tubes, it calms her down quick, plus having baby sissy there today gave Lola an extra boost of confidence.
After an hour of chemo infusion, Lola received a poop Band-Aid from her nurse lol. It was definitely meant to be because Lola’s favorite word currently is “poo poo head.” 💩 🤦🏻♀️🤣 We have no clue where she learned that from. She just started saying she was a poo-poo head out of nowhere lol.
We stopped by to visit Auntie Lexi and wish her happy birthday before heading home. Lola did great today, but she was definitely exhausted once we got home. She slept half the rest of the day. We are so proud of our baby girl. She’s so brave and strong and she doing it, she’s kicking cancer’s flat butt! 👏🏼🥹♥️
#lolastrong #childhoodcancer #childhoodcancerawareness #childhoodcancersucks #childhoodcancerwarriors #mylittlewarrior #cancersucks #childhoodleukemia #thisiswhatarealherolookslike
April 29th- Today we were prepared for a long day with an early chemo treatment and then off to the hospital for a spinal tap procedure. We attempted to drop off baby sissy to stay with grandma and grandpa because the hospital doesn’t allow babies into the procedure waiting areas, but as you can see Lola did not like that plan. She’s so attached to Klaira it makes it harder for us to have baby sissy stay the night these days. So we ended up going back home with both babies strapped in. Lol. It’s ok, it just meant mommy and daddy had to be extra extra prepared for this early morning.
We dropped off Klaira in the morning to be with my mom and Lola was sad because she knew we were going to the hospital. Lola had to be NPO for 12hrs too because she was getting her spinal tap. It’s the worst! And I t’s as if she knows because she never wakes up in the morning immediately asking for milk or food, but she will on procedure days.🤦🏻♀️ She’s been a lot more anxious these past few visits. I feel it’s because she knows the routine and the anticipation makes her anxious and worried. We always try to talk her out of feeling anxious, but there’s only so much you can say to a baby who comprehends too much and remembers that clinic and hospital = needles. All the medical play, all the reassurance, all the love and comfort we give goes down the drain when she knows that she’s about to get her port accessed. 😭 when she sits on daddy’s lap and he leans back, she already screams and cries for him to stop. As parents, we want to be our baby’s safe place, but we are forced to be the ones to restrain her and make sure the medical staff get it right the first poke so they don’t have to access her port more than once. It’s such a heavy guilt to carry. 😣😭
Unfortunately Ellora didn’t make count. It wasn’t her ANC levels, they were good, it was her platelet count. We figured her platelets were lower this time too because we’ve been seeing
April 27th- Today we got to experience a fun outing with some other local cancer families. It was so nice to just talk and listen to other women who just get it. I felt heard and loved listening to all the other women and their inspiring stories of their little warriors. We all understood each other’s challenges, fears, & concerns. No need to explain terminology, why things happen a certain way, what meds do what, why you feel and react a certain way…they just get it and it was so nice.🩷Thank you @mon_elisa and @solmenaphoto for setting this up for us giving us moms a safe place to just be us!
Ellora had a blast meeting and playing with all her new cancer warrior friends. She went home asking about them and she was all smiley when I told her that they are cancer warriors too. She said…”mommy, they fighting cancer too? They poop on cancer’s face too?!” 🤦🏻♀️🤣 poop is currently one of her favorite words.
I can’t wait to receive our mommy and warrior photos! 🩷
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#lolastrong #teamlola #childhoodcancerwarrior #childhoodcancer #childhoodcancerawareness #childhoodcancersucks🎗 #mylittlewarrior #childhoodleukemiaawareness #childhoodleukemia
April 24- Today was an early morning appointment to have Lola’s mic key button changed. I prepped her up with a pep talk about how her doctor friend was going to nicely take out her old button and give her a nice new one. She knew her old one was getting yucky and she was excited for a new one, until she had to be undressed. All the initial trauma probably came creeping back in as it did for me and daddy too. It was a super quick procedure. A quick pull out and pop in with the new button. She did great even though she cried her eyes out and screamed loud enough for the rooms down the hall to hear. The poor nurse who assisted us was shaken up. Lola’s verbal skills…”let me go, I don’t want a new mic key button.” probably scared her.
It’s so hard to have a 2 year old understand that everything that has to be done in that moment is for the best of her well being. She’s a fun, sweet baby til the medical trauma gets triggered. Mommy and daddy have to do our best to calm her down (never works) and then hold her still for the medical staff to do what they need to do. It never gets easier. We hate hearing her call out to us, “help me!” and instead have to do the opposite and hold her down. We feel a big sense of betrayal, but at the same time need to be strong for her and get it done swiftly and safe for her sake. 😖😭
Right when you feel like you are somewhat emotionally recovering from the past few months, there’s moments like these where you get kicked in the face by cancer and realize that it’s still completely trying to control your life!
But we won’t let it!! 👊🏻🫡 We will continue to fight alongside our little warrior and not only will we beat cancer, but we will beat the trauma that come with it!!!🦾
#lolastrong #childhoodcancer #childhoodcancerwarrior #childhoodcancerawareness #childhoodmedicaltrauma #medicaltrauma #childhoodleukemia #childhoodcancersucks #mylittlewarrior #ourchildrendeservebetter
April 24- Today was an early morning appointment to have Lola’s mic key button changed. I prepped her up with a pep talk about how her doctor friend was going to nicely take out her old button and give her a nice new one. She knew her old one was getting yucky and she was excited for a new one, until she had to be undressed. All the initial trauma probably came creeping back in as it did for me and daddy too. It was a super quick procedure. A quick pull out and pop in with the new button. She did great even though she cried her eyes out and screamed loud enough for the rooms down the hall to hear. The poor nurse who assisted us was shaken up. Lola’s verbal skills…”let me go, I don’t want a new mic key button.” probably scared her.
It’s so hard to have a 2 year old understand that everything that has to be done in that moment is for the best of her well being. She’s a fun, sweet baby til the medical trauma gets triggered. Mommy and daddy have to do our best to calm her down (never works) and then hold her still for the medical staff to do what they need to do. It never gets easier. We hate hearing her call out to us, “help me!” and instead have to do the opposite and hold her down. We feel a big sense of betrayal, but at the same time need to be strong for her and get it done swiftly and safe for her sake. 😖😭
Right when you feel like you are somewhat emotionally recovering from the past few months, there’s moments like these where you get kicked in the face by cancer and realize that it’s still completely trying to control your life!
But we won’t let it!! 👊🏻🫡 We will continue to fight alongside our little warrior and not only will we beat cancer, but we will beat the trauma that come with it!!!🦾
#lolastrong #childhoodcancer #childhoodcancerwarrior #childhoodcancerawareness #childhoodmedicaltrauma #medicaltrauma #childhoodleukemia #childhoodcancersucks #mylittlewarrior #ourchildrendeservebetter
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