We pray that Talon will be able to make it to a banana game in June! All depending on how he is doing! He was playing baseball in the backyard & got his @tannerthomas_ jersey out. Another clinic day tomorrow, praying for great counts. #aplasticanemiawarrior #aplasticanemiaawareness #talontough #savannahbananas
Quote #6 • • • #aplasticanemia #aplasticanemiaawareness #aplasticanemiawarrior #nomarrowmeghin #motherhood #momera #boymom #pregnancy #postpartum #postpartumdepression #veterinarian #dogtor #bookstagram #memoir #author
Quote #5 • • • #aplasticanemia #aplasticanemiaawareness #aplasticanemiawarrior #nomarrowmeghin #motherhood #momera #boymom #pregnancy #postpartum #postpartumdepression #veterinarian #dogtor #bookstagram #memoir #author
Quote #4 • • • #aplasticanemia #aplasticanemiaawareness #aplasticanemiawarrior #nomarrowmeghin #motherhood #momera #boymom #pregnancy #postpartum #postpartumdepression #veterinarian #dogtor #bookstagram #memoir #author
Aplastic anemia is a rare and potentially life-threatening blood disorder. If you suspect you have aplastic anemia or are experiencing symptoms suggestive of bone marrow failure, it's important to consult 𝗗𝗿. 𝗥𝗶𝘁𝘂𝗷𝗮 𝗨𝗴𝗮𝗹𝗺𝘂𝗴𝗹𝗲, for prompt evaluation and effective treatment. 𝗕𝗲𝗴𝗶𝗻 𝗬𝗼𝘂𝗿 𝗣𝗮𝘁𝗵 𝘁𝗼 𝗪𝗲𝗹𝗹𝗻𝗲𝘀𝘀 - 𝗥𝗲𝘀𝗲𝗿𝘃𝗲 𝗬𝗼𝘂𝗿 𝗦𝗽𝗼𝘁🗓️ 🤳Call Us: +91 9561094442 📍𝐖𝐨𝐜𝐤𝐡𝐚𝐫𝐝𝐭 𝐇𝐨𝐬𝐩𝐢𝐭𝐚𝐥𝐬, Adams Wylie Memorial, 1877, Dr. Anand Rao Nair Marg, Mumbai Central, Mumbai - 400011 . . . #drritujaugalmugle #aplasticanemia #aplasticanemiasucks #aplasticanemiatrust #aplasticanemiafighter #aplasticanemiawarrior #aplasticanemiasurvivor #AplasticAnemiaAwareness #aplasticanemiaawareness #anemia #anemias #anemiasucks #anemiasymptoms #anemiaproblems #anemiaawareness #AnemiaPrevention #anemiadisease #anemiadoctor #mumbaidoctor #mumbaidoctors #mumbaiconsultant #ConsultantPhysician #consultantphysician #doctor #doctors #mumbai #mumbaicentral
8 months. It feels like a lifetime, yet it’s only been 8 months since Keira’s world turned upside down with the diagnosis of Severe Aplastic Anemia🩸(Bone Marrow Failure). It’s been a journey filled with uncertainty, fear, and countless hospital visits. But through it all, Keira has shown immense strength and resilience. 6 months ago, she embarked on a new chapter of her battle: Immunosuppressive Therapy. It wasn’t an easy decision, but it was one filled with hope and determination. Every day brought new challenges, but Keira faced them head-on with unwavering courage. And now, as we mark the date of April 8th, it signifies more than just another day on the calendar. It marks the beginning of the wind down of her Immunosuppressive Therapy. It’s a milestone we’ve been eagerly anticipating, yet one that brings a mix of emotions. There’s hope, of course. Hope that this treatment has done its job, that Keira’s body has responded positively, and that she’s one step closer to recovery. But there’s also apprehension. The fear of the unknown, of what lies ahead once the therapy is complete. But through it all, one thing remains certain: Keira’s strength and resilience know no bounds. She’s faced every challenge with grace and bravery, inspiring all of us who are fortunate enough to witness her journey. As we embark on this new phase, let’s rally around Keira with love, support, and encouragement. Together, we can help her navigate whatever comes next, knowing that she’s not alone in this fight. Here’s to my amazing daughter, to her unwavering spirit, and to brighter days ahead. 🌟 #TeamKeira #AplasticAnemiaWarrior #haematology #bloodwork #transfusions #bonemarrow #severeaplasticanaemia #warrior #chronicillness #eds #bloodtransfusion #platelets
Today is living donor day 💚💙 I am so blessed and grateful everyday that my only sibling was a 100% match and I did not have to sit on the waiting list to find a bone marrow donor. I could not thank my brother enough for donating his bone marrow to give me a second chance at life. It is so surreal and I know the universe has so much more in store for me 🙏🏼 never take your health for granted. #bonemarrowtransplant #aplasticanemiawarrior
Oh that girl? She just got taken off ALL OF HER POST-TRANSPLANT MEDS at her clinic appointment!!! It's a happy day in the life of Annastyn! #aplasticanemia #aplasticanemiawarrior #stemcelltransplant #warrior #survivor
Day +100 🎉🎉🎉 There is so much to say about these last 100 days. When we first learned about transplant, the 100 days were almost too hard to imagine. And, she did it. We all did it. Kate proved she can do anything; chemo, radiation, hospitals, missing family, friends and school, losing her hair. And she’s done it with grace. She’s the definition of brave. We couldn’t be more proud of our girl. Making it to this milestone is big. It means no more line in her chest, reduced medications, less time in clinic, more freedom to leave the house, but it doesn’t mean this is over. We still have to be vigilant about germs and keep Kate safe. Her risk of rejection has dropped way down. Now that she’s at this point with no rejection, she only has a 5% chance of disease reoccurrence. All her tests have come back great. Her bone marrow biopsy shows healthy, normal bone marrow. And her DNA, both blood and bone marrow, show that she has 100% Leah DNA. Leah remains the hero of this story. She saved her sister and did it without hesitation. We are looking forward to normalcy, but also know that we will never be the same because of this experience. We are changed people, and we move forward with a new sense of gratitude for life and gratitude and love for each other. ♥️💚♥️💚♥️💚 📸: @han.photofilm (thanks for helping Kate feel good about her bare head!) #aplasticanemia #bmt #bonemarrowtransplant #siblingdonor #sistersaver #bonemarrowfailure #aplasticanemiawarrior
I overcame every obstacle I went through and will continue doing that. #aplasticanemiawarrior ❤️💚💪
Karmanos this am wasn’t the results I wanted to see, had a dip in all levels but they are still good enough levels. But still not fun to see such a big drop in Platlets and hemoglobin 😳😫😢🙏🏻❤️but I know Gods got this . ❤️🙌🏻🙏🏻 #aplasticanemiawarrior
UPDATE ON OUR APLASTIC ANEMIA WARRIOR: Baby girl has received all of her childhood vaccinations and is enrolled to attend Kindergarten at a brick and mortar school! It’s been such a journey and we are so grateful we’re at the tail end of this battle. I wanna thank you all for being patient with me and for your understanding in all the extra requirements. You are no longer required to wear a mask to your appointment. But please note that I might wear a mask during your appointment as that is my choice in protecting you, the client, as well as myself. See you at the studio! #aplasticanemia #aplasticanemiawarrior #aawarrior #vsaa #bonemarrowrecipient #bonemarrowtransplant #bonemarrowtransplantrecipient
Sya si Sam Balajadia lumalaban sa sakit na APLASTIC ANEMIA(BONE MARROW FAILURE). Sa edad nyang 7 taong gulang madami na syang napagdaan. Kada punta nya ng ospital hindi mabilang na tusok ng karayom ang nararanasan nya.Madalas ayaw na nya magpadala ng Ospital kasi hirap na din sya. September 2022 nung nadiagnosed sya na may Aplastic Anemia,mula noon hindi na naging normal ang buhay nya bilang bata. April 2023 nag ka brain hemorrhage sya(pagdurugo sa utak)😢dahil sobrang baba ng platelet nya.Halos 1 buwan syang nasa ICU.Awa ng Dios nakarecovered sya. July 2023 nag positive naman sya sa Covid😢.Awa ng Dios nalagpasan na naman nya🙏 Minsan nasabi nang batang ito na "Mama bakit ganito ang buhay ko?Palagi nalang akong may sakit"😢 Napakasakit marinig nang ganung salita mula sa kanya. Nakakadurog ng puso💔 Sam kung pwede lang akuin yang sakit mo ginawa ko na😢 Para kaming nasa bangin hindi namin alam kanino kami hahawak,hindi namin alam kanino pa kami kakapit😢 #aplasticanemia #aplasticanemiawarrior
🌟 Urgent Medical Update! 🌟 We are reaching out to our incredible community with a heartfelt request for support. Our young warrior, Padmalochan Dass, only 13 years old, has been diagnosed with aplastic anemia, a rare and serious condition. We are now in consultation with the renowned medical experts, Dr. Vikas Dua and Dr. Arun Kumar, along with their exceptional team at Medigocare, to plan for a life-saving bone marrow transplant. Padmalochan's strength and determination have inspired us all, but he needs our help more than ever. Together, we can make a real difference in his life! 🙏 Let's Rally Together! 🙏 Padmalochan and his family need our united strength and support to face this battle head-on. Every action, every share, and every donation brings us one step closer to giving Padmalochan a chance at a healthy future. Please join us in this fight against aplastic anemia, and let's show Padmalochan that he is not alone. Together, we can make a difference! #TeamPadmalochan #AplasticAnemiaWarrior #BoneMarrowTransplant #Medigocare #HopeForAFuture
🙏 Urgent Help Needed! 🙏 Meet Farhan, a 17-year-old boy suffering from aplastic anemia, a life-threatening condition. His monthly medicine cost is 200000 INR. Unfortunately, his father, a door-to-door sales agent, has been unable to work consistently as he is attending Farhan's medical treatment at AIIMS. We kindly request your support and donations to help Farhan and his family during this challenging time. Every contribution, no matter how small, can make a significant difference in improving his quality of life and covering his medical expenses. Please donate generously and share this message to raise awareness. Let's come together as a community and provide hope for Farhan's brighter future. Thank you for your kindness and generosity. Together, we can make a positive impact and bring a ray of hope to Farhan and his family. #DonateForFarhan #AplasticAnemiaWarrior #CommunitySupport #utthancharitabletrust #uct #ngoindia #charity #support
Sad to say story Ang Aplastic Anemia ay hindi birong sakit na kung saan ang body nila ay hindi nag produce ng sapat na dugo sa katawan ito ay napakadelikado.Hindi maubusang tusok ng karayom at salin ng dugo para lang makasurvived sila.Na kung saan ang tinatagal lang ng salin sa katawan nila lalo ang platelets ay 5-7 days need na ulit salinan🥹🙏.at ito ay panandaliang gamot lamang🥹🙏. Ang Aplastic Anemia ay hindi mo makikita sa itsura nila ang sakit nila🥹 kaya samin mailap ang tulong,ito ung sobrang nakakalungkot🥹.sa totoo lang po madami ang nawawala ng maaga na Aplastic Anemia sa kadahilanang hindi sila nagagamot ng maayos,yung iba hindi nakakapagtake Ng gamot💔💔💔,nahirapan tanggapin sa mga hospitals💔 need mo muna mag bleeding sa harap nila para ka masalinan Ng dugo(adults AA),merong nasa emergency pa lang nag seizure na kasi nag internal bleeding 🥹 sa tagal ng proseso kasi ung patient kung titingnan mo nga parang walang sakit💔💔💔. Inalis ang tulong sa pcso para sa atg treatment 🥹💔 which is need na muna namin ngayon mag fundraise,ung iba di pa natatapos mag fundraise for ATG di na kinaya💔💔💔.per vials sa Sandoval is 10,444 depende sa timbang at age ng patient. Sobrang nakakaawa kami mga Aplastic Anemia sana mapansin kami ng gobyerno💔💔💔 na bigyan sulong ang ATG treatment para sa mga may Aplastic Anemia🥹🙏🙏🙏🙏. Bilang magulang napakasakit sa amin na makita ang aming anak na nahihirapan. Na yung anak mo nag aagaw buhay sa harap mo, na ang iba hindi na kinakaya na katawan..🥺🥺 Please pray for Aplastic Anemia patient🙏 Please help Aplastic Anemia patient🙏 Mentally emotionally, physically damaged 🙏 Please share this post🙏🥹 Sana makarating po sa may mga kakayahan tumulong sa mga katulad namin na LUMALABAN, at Patuloy na LALABAN..💪💪💪💪💪💪 Your so brave warrior Sam Balajadia .. #aplasticanemia #aplasticanemiawarrior Raffy Tulfo in Action
My big-hearted hubby shaved his head in solidarity with our favorite oldest niece, Elyana. Elyana, You’re our hero. Claiming the Word that “With His stripes, we are healed.” Aunt KK, Uncle J, Nimar and Kori love you to infinity! #aplasticanemiawarrior #aplasticanemiaawareness #ResurrectionSunday @stepla @krog85 @jufdal #ElyanaStrong
Everybody needs help sometimes, Ru. Even Spider-Man. ❤️💙 #TeamRU #RuStrong #aplasticanemiawarrior
This month has been extremely hard for Ru. He is needing platelets every 7-10 days and we can’t seem to be on time for infusions. This week he needed platelets twice. His symptoms are just getting worse and you would think with taking treatment it would get better and it isn’t. We have 2 and half months left till we give up on ATG treatment. I’m trying not to lose hope but seeing his levels this week is freaking me out if ima be honest… #aplasticanemiaSUCKS #aplasticanemiawarrior #transfusiondependent
How stinky cute is this! My family wearing our shirts for Ru. MAD KID FIGHTING AGAINST APLASTIC ANEMIA ❤️💪 #aplasticanemiaawareness #aplasticanemiawarrior #hisfightismyfight #TeamRu #RuStrong
#HisFighIsMyFight #aplasticanemia #aplasticanemiawarrior #TeamRu #RuStrong
Ru is still having a hard time with his port and child life mention about this cute little frog named hopper! Thank you @kelseysdream for Mr. Hopper! Ru is so happy to have someone like him 🥺❤️ #aplasticanemia #aplasticanemiawarrior #transfusiondependent
Today makes infusion number 30! #aplasticanemiaawareness #infusion #transfusiondependent #aplasticanemiawarrior
After three and a half long years of battling Aplastic Anemia with blood transfusions, immunosuppressive injections, stimulants, antibiotics, antivirals, an experimental procedure in June and a final procedure in August we finally got the words we have by waiting for.... I AM IN REMISSION from my Aplastic Anemia 🙌🙏🙌 This news has been something my family and I have been waiting so long for and to finally have it is like the weight of the world off of our shoulders. I am so grateful for everyone that has been fighting this battle with me. My husband, my daughter (my life saver), my stepsons, my soon to be daughter-in-love, my amazing friends Dana and Amy...I love you all in perpetuity ❤️ Praise God because without Him, none of this, would have ever been possible. Here is to a whole new life for my family and me 🙌🙏🙌 #AplasticAnemiaWarrior #Remission #LifeStartsNow #Blessed #Grateful #PowerOfPrayer #WalkByFaith #GodsGotMe #Fighter #NeverGiveUp #RedForAplasticAnemia
Due to lack of oxygen caused by low number of red blood cells it may be challenging but no risk in that. One can perform exercise under supervision. . . . . . #aplasticanemia #aplasticanemiaawareness #aplasticanemiawarrior #aplasticanemiasucks #aplasticanemiafighter #aplasticanemiasurvivor #DrKKCompleteHematologyCare #drkarunakumar #drkkhematologyclinic
Aplastic anemia if not treated can cause other severe health problems. . . . . . #aplasticanemia #aplasticanemiaawareness #aplasticanemiawarrior #aplasticanemiasucks #aplasticanemiafighter #aplasticanemiasurvivor #DrKKCompleteHematologyCare #drkarunakumar #drkkhematologyclinic
Living with aplastic anemia is not easy but you can manage it by remembering these points. . . . . . #aplasticanemia #aplasticanemiaawareness #aplasticanemiawarrior #aplasticanemiasucks #aplasticanemiafighter #aplasticanemiasurvivor #DrKKCompleteHematologyCare #drkarunakumar #drkkhematologyclinic
Treatment of aplastic anemia depends on patient's health and severity. . . . . . #aplasticanemia #aplasticanemiaawareness #aplasticanemiawarrior #aplasticanemiasucks #aplasticanemiafighter #aplasticanemiasurvivor #DrKKCompleteHematologyCare #drkarunakumar #drkkhematologyclinic
These tests are used to diagnose aplastic anemia. . . . . . #aplasticanemia #aplasticanemiaawareness #aplasticanemiawarrior #aplasticanemiasucks #aplasticanemiafighter #aplasticanemiasurvivor #DrKKCompleteHematologyCare #drkarunakumar #drkkhematologyclinic
We cannot prevent aplastic anemia but we should know about what causes aplastic anemia. . . . . . #aplasticanemia #aplasticanemiaawareness #aplasticanemiawarrior #aplasticanemiasucks #aplasticanemiafighter #aplasticanemiasurvivor #DrKKCompleteHematologyCare #drkarunakumar #drkkhematologyclinic
These are the most common symptoms of aplastic anemia but sometimes there are no visible symptoms. . . . . . #aplasticanemia #aplasticanemiaawareness #aplasticanemiawarrior #aplasticanemiasucks #aplasticanemiafighter #aplasticanemiasurvivor #DrKKCompleteHematologyCare #drkarunakumar #drkkhematologyclinic
Acquired aplastic anemia is caused by a deficiency in the immune system whereas inherent aplastic anemia is caused by gene defects. . . . . . #aplasticanemia #aplasticanemiaawareness #aplasticanemiawarrior #aplasticanemiasucks #aplasticanemiafighter #aplasticanemiasurvivor #DrKKCompleteHematologyCare #drkarunakumar #drkkhematologyclinic
#aplasticanemia #aplasticanemiawarrior #aplasticanemiaawareness
Big brother sharing awareness! 💙 #aplasticanemia #aplasticanemiaawareness #aplasticanemiawarrior
Aplastic Anemia is a rare blood disorder which is treatable but if left untreated can be life threatening. . . . . . #aplasticanemia #aplasticanemiaawareness #aplasticanemiawarrior #aplasticanemiasucks #aplasticanemiafighter #aplasticanemiasurvivor #DrKKCompleteHematologyCare #drkarunakumar #drkkhematologyclinic
Goodbye 11b!! 👋 Until next time!! #oncology #aplasticanaemiaawareness #aplasticanemiawarrior
Today's the day, getting ready for surgery with a transfusion of platelets! #brotherlylove💙 #aplasticanaemiaawareness #aplasticanemiawarrior
Hi 👋 everyone, sorry we’ve been so quiet since Alfie had his PICC line in. We’re just plodding along. Today we had a lung 🫁 function test and clinic review up in Bristol. Alfie’s robot is working now and he managed to say hi to a few friends this morning before we drove up. We had a lot of questions for the consultant to see what the plan will be since his pesky platelets have been hovering between 20-30 and not where they should be. He is still 100% engrafted. At 8 months post-transplant he is still on steroids and immuno-suppressants. We are being told the same thing, to wait. But 4 years down the line, it is, without a doubt, frustrating for everyone, most of all, Alfie. The long and short of it is (as I don’t want to bore you with all medical jargon) is that Alfie will need yet ANOTHER bone marrow extraction in 2 weeks time, they may do an endoscopy in his gut at the same time as he’s been experiencing stomach problems since transplant. With the bone marrow biopsy, they want to check the parent platelet cells. Depending on the results, a new drug called Eltrompobag is on the cards 😫. Poor Alfie, all he wants to do is go back to school. The Pinckneys fight 👊 on. #aplasticanemiawarrior #aplasticanemia #bonemarrowtransplantsurvivor #bonemarrow #bonemarrowtransplant #platelets #immunocompromised #bristolroyalhospitalforchildren
12 hour round trip to BRI. Safe to say we’re both tired. Photo - Alfie was fairly grumpy when we got there. Nil by mouth since Monday 6pm plus he is on steroids which makes him hungry, not a great combo. Not much chatting to the nurses, anaesthetist, consultant or me! Photo 2 - He perked up when the teacher came in to play a game with him. Photo 3 - Alfie in theatre waiting to go under Photo 4 - went to theatre just after 11 and out of recovery at 1pm - definitely HANGRY at this point. Photo 5 - new PICC line #aplasticanemiawarrior #aplasticanemia #aplasticanemiaawareness #bonemarrowfailure #bonemarrowtransplant #platelets #piccline
Alfie’s PICC line was blocked on Monday so he couldn’t have his bloods taken. So we dutifully returned to hospital for another go today. Still no joy. His line has been causing him trouble for a few weeks anyway so today we went back to the magic cream and needle 💉 technique. They also removed his PICC line so for the first time in 20 MONTHS, Alfie is line free! Will have to see what the docs in Bristol say next week. In OTHER news, we have been given the green light by the docs to leave Devon 😂 so we’re finally travelling back to Brighton to see Gong Gong, Poh Poh before they fly back to HK. Excitement levels are high despite two long trips to hospital this week. We won’t quite believe it until we get there! #aplaticanemia #aplasticanemiawarrior #aplasticanemiaawareness #bonemarrowfailure #bonemarrowtransplant #bonemarrowtransplantsurvivor #piccline #brightonherewecome
Let’s play a game!! Postcard from…….. Here we are at BRI and I’m teaching Alfie the meaning of irony…his room is a brightly painted beach scene! Since he can’t go to the beach as the sun ☀️ can cause skin cancer due to him being on ciclosporin, we thought you could bring the sunshine to him!! Where are you on holiday?? Send Alfie a message/photo with ‘postcard from ?’ - remember when people actually wrote postcards 😂!? We’d love to hear from you and your summer travels. Look forward to seeing some lovely pics. Ready, steady, GO!! #aplasticanemiawarrior #aplasticanemia #aplasticanemiaawareness #bonemarrowtransplant #bonemarrowtransplantsurvivor #bristolroyalhospitalforchildren #hospitaldays #postcardfrom
A post for Alfie x It’s important to acknowledge the good days and the bad days. Today, I dropped the girls at summer camp. They were in their element, surrounded by classmates and the excitement of a day full of activity. On the way out, we bumped into the 3 cousins, then we saw Alfie’s 2 best friends from school, who said a quick hello to him. As we walked away, I could see how crestfallen Alfie was. We literally exited the camp and went across the road to the hospital. I could see the hurt 😢 in Alfie’s eyes, I could see his head drop and I could feel his inner pain. Call it a mother’s instinct. What I couldn’t do was to take it away or make him feel better so I had a cry and do you know what? He hugged ME and said ‘it’s okay mummy, it’s not your fault I’m sick’. Well that just got to me even more. The floodgates opened and I spent most of the morning teary. But as if by magic I had a phone call from Martigne in NZ and lots of What’s App messages with Norma in HK and it’s okay to feel sad. Usual routine checks but I forgot Alfie had to have his pentamidine infusion where he is in the room on his own for 30 mins while I sit and wait outside. 4 1/2 hours later we were on our way. Alfie, I’m writing this so you can look back and remember. You are simply incredible. Even when you are not feeling 💯, you give hugs to make me feel better. I am so proud of you. You make the world a better place, bug. Never ever change. One day, in the not too distance future, we’ll make up for lost time. Love you x #aplasticanemiawarrior #aplasticanemia #aplasticanemiaawareness #littlefighter #bonemarrowfailure #bonemarrowtransplant #proudmummy
Day 0! Bone marrow transplant is done! There were 4 bags of marrow from my donor, and they only took about 11 minutes each to transfuse. For those who may not know, a bone marrow transplant is not a surgery. The new cells just go in through my central line just like all the chemo and other meds they’ve been giving me. Now we have the longer process of waiting for the engraftment. I’ll have 4 more days of chemo and be in the hospital for several more weeks. I’m so thankful to my donor for the gift of new life and for all of the prayer warriors who are supporting me and my family through this process! #itsajoyousjourney #aplasticanemia #aplasticanemiaawareness #bonemarrowtransplant #aplasticanemiawarrior #bonemarrowfailure #bonemarrowfailureawareness @bethematch @aamdsif
Day -4. This was earlier today just after they started immunosuppressive therapy and two different kinds of chemo. I’ve started having a few side effects, but my care team is amazing and is doing a great job of helping me mange the side effects before they get too bad. The management meds are making me very sleepy, but I can handle that! As always, my hubby is taking great care of me and helping me smile. 😊 Thank you all for your continued prayers!
Day -6 until transplant. All settled in at the hospital. So glad we have a great view of the Oklahoma State Capitol from the room and don’t have to look at the side of a building or a parking lot for the next 4-6 weeks. I’ll get a central line put in tomorrow morning and start chemo. Everyone here has been great, but I already miss my family. We are all so ready to get to the healing side of this and get back to living! #itsajoyousjourney #aplasticanemia #aplasticanemiaawareness #bonemarrowtransplant #aplasticanemiawarrior #bonemarrowfailure #bonemarrowfailureawareness @aamdsif @bethematch
Not brow related but wanted to give you guys a life update. We visited the LA Arboretum over the weekend and this was first outing since Robin was diagnosed. The kids had a blast! They wanna go back every weekend now lol. As you guys know, Robin was diagnosed with Aplastic Anemia last year. Her bone marrow stopped producing blood. All of her numbers critically low. She had to undergo a bone marrow transplant and her superhero big sister was a 10/10 match. It’s been almost a year since her transplant and Robin continues to do well. She had her first vaccine and we’re checking next week to see if her body made antibodies. Thank you all for your patience and your support as we navigate through our new “normal”. If you’re looking to be on the registry, please visit @bethematch you can help save someone’s life. ♥️ photocred 📸: @angelicaraquid.psd #family #aplasticanemia #aplasticanemiaawareness #aplasticanemiawarrior #robinelisedeguzie #jordanrosedeguzie #deguzies
Didn’t feel like walking today but did it anyway so glad I did ❤️🙌🏻💎🍀 #aplasticanemiawarrior #ddpymakingitmyown #positivelyunstoppable2022 #DDPY
The Pinckneys back in the spotlight. Thank you ITV for sharing our story of hope for others. You are amazing x #aplasticanemiawarrior #aplasticanemia #aplasticanemiaawareness #bonemarrowfailure #bonemarrowtransplantsurvivor #bonemarrowtransplant #itvwestcountry #raisingawareness #donatestemcells
We've had a set-back with all numbers tumbling to old lows and today we spent the day back in Bristol for his sixth bone marrow extraction and a lumbar puncture (where they collect some fluid next to his spinal column) to try and establish why it's all gone a bit wrong. He was utterly amazing. So, so brave. Not a single negative comment, snivell, whinge or anything. Recovered quickly from his general anesthetic and we were home by the time his sisters were going to bed. Yay! We had lovely 'man-to-man' chats all the way there and all the way back because he wanted to talk not sleep or listen to music which, despite the reason for the journey, is such precious, focused and uninterrupted time together. A lot of football chat, me pointing out good and bad driving techniques (other road users, not mine!!) and wonderful moments reminiscing about his Grandfather. We swapped some Premier League stickers with his BMT buddy, Oclan which was a positive so they're both gradually filling up their albums. Great distraction! You blow our minds Bug. We can't imagine being as strong as you. He's utterly shattered and trying to keep in good spirits so it's not just about his physical health but his mental health throughout this ordeal which we've been working on very hard. Sometimes a special opportunity pops its' head up. More about that very soon... All love, Charles and Lily x #aplasticanemiawarrior #aplasticanemia #bonemarrowfailure #bonemarrowtransplantsurvivor #bonemarrowtransplant #warrior #hospitallife #bristolroyalhospitalforchildren .
Another day, another drug. Our hero had to be in total isolation alone with a nebuliser to open up his airways and then administer a new drug to swap for another which had knocked him sideways. Back home again and fingers crossed. You've got this Bug x — with Lily Pinckney. #aplasticanemiawarrior #aplasticanemia #bonemarrowfailure #bonemarrowtransplantsurvivor #bonemarrowtransplant #hospitallife #warrior #stillfighting
Set of rules for Alfie's condition: Rule number 1: don't make any plans. Rule number 2: read rule number 1. Our plan for the first BBQ of the year on Sunday has fallen apart as we're back in hospital after just a couple of days at home. Kidney trouble. Think we'll rent a room here... 🙄 #aplasticanemiawarrior #aplasticanemia #platelets #hospitallife #herewegoagain #bonemarrowtransplant #bonemarrowtransplantsurvivor #bonemarrowfailure
Everything we needed 🙏🏻🖤🍦 If you ask any of us where our most favorite place in the world is… I can almost guarantee the answer will be mom + dads bed. If not that… then Baskin Robbins. 🤪😂 These last 37 days have been so hard, but we have the toughest boys around. This time together was so special. I can’t wait until we are reunited at home for good! In the meantime, hotel hangs work just fine. 💕 #MyFavoritePeople #beckbearstrong #aplasticanaemia #aplasticanemiawarrior #aplasticanemia #bonemarrowtransplant #bonemarrow #ucsf #transplant #bmt #healing #thankyoulord
I wanted to share our baby girl’s progress. Robin is doing well. They’ve taken her off the immune suppressant and are monitoring her immune function before giving her her first round of vaccinations. She basically has the immune system of a newborn baby. We are still being very cautious. Today, she saw 2 of her cousins and they were able to play safely wearing masks and even had a picnic. Just seeing her playing carefree, running around, going down the slide. It brought tears to my eyes. We’ve been so isolated for a year, it was great seeing her be a child again. God is good! I want to thank you all for your patience and understanding. I know it’s an extra step to get tested before seeing me and I appreciate you guys so much for thinking of our baby girl. It’s been a rollercoaster of a year. And although we still have a long road ahead, we’re seeing the light at the end of the tunnel. As of right now, I am still not booking unvaccinated clients for facials and microchanneling. You guys are on the waitlist and I appreciate your patience. You are more than welcome to come in for any brow services though 😉 For anyone who has prayed for Robin or has sent our family positive vibes, THANK YOU FROM THE BOTTOM OF OUR HEARTS. There will never be enough words for your kindness and support. Much love, Narlet & Fam. #DeGuzies #AplasticAnemiaWarrior #AplasticAnemiaSucks #aplasticanemiaawareness #aplasticanemiasurvivor #bonemarrowfailure
These boys got to hangout today and it was EVERYTHING THEY NEEDED 💕💪🏼 So thankful for the staff that helped make this happen!😭 #beckbearstrong #aplasticanaemia #aplasticanemiawarrior #bonemarrow #bonemarrowtransplant #bestbros #missingbigbro #marrowdonor #bethematch #ucsf #butgod #rarebear #bmt
I don’t think there’s anything in the world that can prepare you for watching the nurses come in fully gowned, gloved, masked, goggled- protected with a little syringe of medication in a special baggie labeled HAZARD across it. Then to watch that little syringe get injected directly INTO your child. So many thoughts. So many concerns. So many emotions. But tonight, I’m giving it all to Him. All of my worries, all of my fears, all of my concerns. Tonight I will rest knowing He is in control and He will make something beautiful from this. 🤍🌿 “Though the fig tree does not bud and there are no grapes on the vines, though the olive crop fails and the fields produce no food, though there are no sheep in the pen and no cattle in the stalls, The Sovereign Lord is my strength; he makes my feet like the feet of a deer, he enables me to tread on the heights. For the director of music. On my stringed instruments.” Habakkuk 3:17, 19 NIV This Bible study is giving me all kind of new insight 😅 great job tonight mama @itssshelly @iron_man61 @patrickosmer @stephaniee_voyles @jerricaleeshelbybabe @mark_v_23 @racinehelenmallory @eliclark2 @cold_heart_hunter @swaggy_tb.07 @matt_v88 @georget_16 #beckbearstrong #ucsfbmt #aplasticanemiawarrior #aplasticanemia #rarebear #BUTGOD #thankfulheart #everymoment #iwillrejoice #habakkuk
Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own. - Matthew 6:34 🤍🙏🏻 #beckbearstrong #aplasticanemiawarrior #aplasticanemia
This is Dr. Rao- Beck’s hem at Valley Childrens. She is truly amazing and has such a special bond with this boy. She’s advocated so hard for us and I will forever be grateful to have met her. She is such a gem and leaves a little bit of her heart with every single patient she sees. We love and are so appreciative for Dr Rao!💕 #valleychildrenshospital #hematology #beckbearstrong #aplasticanemiawarrior #aplasticanemia #bonemarrowtransplant #hematologist #angelonearth #blessed #bestdoctor #bestteam
Baby girl has had so many struggles over the past year and she's been my warrior and my hero she has a lady who she thinks the world of that wanted to something special for her after her port removal. So she got to do a photo shoot with one of her beautiful horses. Kadence loves going to her home and being around them never knew something bigger then her could bring her so much peace. #aplasticanemia #aplasticanemiaawareness #Aplasticanemiawarrior
Day 64 Did yard work did a chair workout and 100 crunches hope ya all had a great day keep kickin ass and rest well 🙌🏻💎❤️ #positivelyunstoppable2022 #aplasticanemiawarrior #ddpymakingitmyown #ddpy
Day 63 Today is Aplastic Anemia Awareness Day and my scheduled workout rest day , I did do my crunches for Sarah Smiths challenge and got my steps in today so it was a productive rest day lol hope ya all had a great day rest well and please if you can donate blood and register to be a marrow donor at BetheMatch.org you could save a life love yas God Bless #positivelyunstoppable2022 #aplasticanemiawarrior #DDPY #ddpymakingitmyown
Käytiin poikien kanssa tänään päiväkävelyllä. Tämä rakas muruseni on sairauden myötä menettänyt mm. hyvän kuntonsa. Kovin pitkää lenkkiä ei jaksa kävellä, kun tulee jo paha olo. Nyt on ihania aurinkoisia kelejä onneksi, mikä motivoi ulkoiluun (siinä auttoi myös kaupasta luvatut herkut 🤭). Pidämme toki vieläkin paljon huilitaukoja ja eteneminen on hidasta, mutta pikku hiljaa. Poikani ei ole myöskään käynyt missään kaupoissa varmaan 1,5 vuoteen. Valikoitiin kävelyaika niin, että kyläkaupassa ei montaa muuta asiakasta ollut, niin pääsi hänkin kävelemään kaupan läpi. Vielä ei uskalleta tätä heikon vastustuskyvyn vuoksi tavaksi ottaa, mutta josko vähän edes piristi. Näinkin yksinkertaisia asioita ihminen kaipaa, kun joutuu eristyksiin. Toivon niin kovin, että hän syksyllä pääsisi muiden mukana kouluun viettämään viimeistä alakouluvuotta. 🙏💙 Vointi hänellä on ollut vaihtelevaa, mutta pääosin hyvää. Heikko olo saattaa iskeä ihan tuosta vaan ja yhtä nopeasti mennä ohi. Sitä on surullista seurata vierestä, kun oikein mitään ei voi tehdä. Onneksi omat hoitoni saatiin pakettiin, niin voin taas enemmän keskittyä hänen toipumiseensa 😍 Ps. Tällä viikolla vietetään kansainvälistä aplastisen anemian-viikkoa 🩸 #aplastinenanemia #aplasticanemia #aplasticanemiaweek #aplasticanemiawarrior #kantasolusiirto #rintasyöpä #triplanegatiivinen #toipuminen #kunnonkohotus #kevät #paavonurmi2023kutsuu #varsinaistaelämää
Day 62 Still am sore try to work through it but not overdo it so this workout was perfect and I got my abs in also 🙌🏻💎 also noticed some bruising and scaring from my HRM so I ordered an arm band one to switch it up , gotta love AA 🤦🏻♀️since my diagnosis ,actually even before I new I had it ,bruises would scar but it eventually fades, but it takes years… oh well …battle scars are cool right ? lol 🤦🏻♀️🤷🏻♀️😝 hope ya all had a great day rest well #positivelyunstoppable2022 #DDPY #aplasticanemiawarrior #ddpymakingitmyown
Day 61 so today was my scheduled day off on the app so I am taking it ! I did to much yesterday and have some bruises and petechia 🤦🏻♀️ trying not to let it get in my head and know that God has healed me. 🙏🏻🙌🏻❤️But I also know when to rest and repair now so that is today ❤️ I did do my crunches for Sarah Smith March challenge tho 🙌🏻👏🏻 hope ya all had a great day rest well and God Bless 🙏🏻🙌🏻💎😘 #positivelyunstoppable2022 #aplasticanemiawarrior #ddpymakingitmyown #DDPY
Day 60 feeling so much better back on track with nutrition and workouts now for the water 💧 🤦🏻♀️will do better with that tomorrow 🙌🏻 Hope ya all had a great day rest well 🙌🏻💎❤️ #positivelyunstoppable2022 #ddpymakingitmyown #aplasticanemiawarrior #DDPY
Day 59 (57-58 had food poisoning so no workout or nutrition unless u consider Runnin to the bathroom a workout lol 🤢🤦🏻♀️😳) felt better yesterday and today but chilled today back at it tomorrow adding my walks and ab work back in my workout since it’s getting nicer out I did so good when I was doing that along with DDPY ! I also treated myself to a bracelet for my birthday and had positively unstoppable inscribed on it 🙌🏻💎wearing it on my right wrist so every time I reach for something to eat I will see that staring back at me to remind me to chose wisely and my Gods got this bracelet on my left because it’s closest to my heart ❤️ well off to bed working on 7 full hours of sleep a night 🙏🏻 hope ya all had a great day rest well 🙌🏻💎❤️😘 #positivelyunstoppable2022 #ddpymakingitmyown #aplasticanemiawarrior #DDPY #holythisis53batman
Day 56 My stomach was angry today I don’t think something I ate yesterday agreed with me 🤢feels better now but taking today as a rest day ,didn’t eat very much today as I want my stomach to heal from whatever aggravated it #positivelyunstoppable2022 #DDPY #aplasticanemiawarrior #ddpymakingitmyown
Day 55 Worked my long day today so taking my rest day still got in well over my steps and did good with my nutrition definitely learning balance . You all know it’s really hard for me not to push my self past my limits but doing that got me sick🤦🏻♀️ so today I rest and reset tomorrow is a new day to kick ass hope your day was great rest well #positivelyunstoppable2022 #ddpymakingitmyown #aplasticanemiawarrior #DDPY
Day 54 Learning a lot this challenge about listening to my body and resting when I need to and that nutrition and sleep are just as important if not most important in health transformation! I felt so much better today and got a workout in also got all my steps in 🙌🏻 God is so good 🙌🏻🙏🏻 #positivelyunstoppable2022 #ddpymakingitmyown #aplasticanemiawarrior #ddpy
Day 53 self care / rest day 👍🏻my bones are still hurting 😩so no workout today 😔rest, tea and epsom salt bath for the win I still got over my steps in today and nutrition was pretty on point, gonna try intermittent fasting also Tomorrow’s a new day will get a workout in tomorrow ! Hope ya all had a great day and rest well 🙌🏻💎❤️ #positivelyunstoppable2022 #ddpymakingitmyown #aplasticanemiawarrior #ddpy
Day 52 Went for a walk with my bestie ❤️that is my workout today, sporting my new DDPY hoodie it’s my new favorite ❤️Taking it easy after all the stuff I did yesterday and yep knew I’d have bruises ugh 🤦🏻♀️they freak me out ugh anyway hope ya all are out there enjoying the beautiful day 🙌🏻💎❤️ #positivelyunstoppable2022 #ddpymakingitmyown #aplasticanemiawarrior #DDPY
Day 51 Balance ,I been working on nutrition, sleep ,and working out …today I worked on my space , my work space and my workout space. I needed to separate them so I made a work space and a workout space and I put my treadmill close to my work so If I want I can walk while my client is processing . Also made a yoga room for me ❤️🙌🏻💎gonna paint the floor this spring waiting till it’s done snowing … so needless to say moving furniture and cleaning was my workout today 🙌🏻💎❤️hope ya all had a great day rest well #positivelyunstoppable2022 #ddpymakingitmyown #aplasticanemiawarrior #DDPY
Day 50 Still have some hip and joint pain so did chair 3 and some stretching was just gonna do the stretching but I was like come on Brenda you can do a damn chair workout and it actually made me feel better and I got the 2000 points for the second day in a row like it knew I went the extra mile today and it rewarded me 🙌🏻💎❤️ Whooooo also did pretty good with. My macros and calories today win win 🙌🏻💎hope ya all had a great day rest well #positivelyunstoppable2022 #aplasticanemiawarrior #ddpymakingitmyown #DDPY