Sofie Stokes Sofie Stokes Strong

Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place. 


Sofie was born on April 11, 2011, and she was in a rush to charge into this world.  We barely made it to the hospital in time and the doctor arrived just in time!  Sofie brings us light, love and laughter every day!  Since she was little, she's displayed so many times her caring and empathetic nature.  She enjoys so many things, but especially spending time with her friends, playing softball and singing.  


Fast forward to 2023, we were cruising along in life, busy with all of our activities, between school and her games and attending her brother's games, etc.  Around mid-June Sofie started to have leg pains, which moved around from her thighs to her lower legs (shin area) and groin.  At first, we didn't think much of it, especially as I (her Mom) had growing pains when I was her age.  And, when the leg pains started, they were waking her up at night, also common.  The leg pains would also come and go, so initially we weren't concerned.  Around the same time, Sofie also had had a fever, so we took her to the pediatrician where they tested her for strep, but it was negative.  They said it was probably a virus, to wait it out, and the leg pain is not connected.  The fever went away and she felt better, but then it came back again.  In the meantime, we had also taken her to a pediatric orthopedist, thinking all the softball she was playing was taking a toll on her legs.  They x-rayed her and saw nothing and said it was probably shin splints (pain at that time was below her knees).  She kept on playing when she could, but didn't have the same gusto, energy and enthusiasm she usually does.   


We then went to Florida June 30 to visit my Mom (her Oma) & Grandpa Tony.  We arrived on a Friday and had the best time in the pool on Sat, July 1st.  Her legs were not hurting, she was feeling fine and we had a great time with Oma in the pool.  The next day however (Sun) Sofie started not to feel well, and her legs started to hurt again.  On Mon, I took her to urgent care in FL, where she was tested for Covid/flu, mono and a UTI.  She was diagnosed with a possible UTI and started antibiotics.  She was still running fevers on Tues & Wed, so I called our pediatrician in NJ.  They said sometimes it takes antibiotics 3-4 days to work/stop the fever.  In my experience, whenever my kids had been on antibiotics in the past, the fever was usually gone by the 2nd day, but I said OK, I'll give it another day.  On Thurs, she was still running a fever, and it got very high (103), so I immediately changed our flights to return home to NJ early.  On Fri, we landed at Newark airport, and drove straight to her pediatrician.  I was not leaving the doctor's office until they figured out what was going on.  They took 3 vials of blood and ordered a chest x-ray on Fri afternoon.   On Sat. morning, July 8, we went for the chest x-ray, and waited for the dr. to call us with the results for both.


On Sat. July 8, our lives were turned upside down, when the pediatrician called and said we need to go to the ER with Sofie immediately.  Ped said her white blood cell (WBC) count was extremely elevated, and that she was in danger of severe consequences.  The dr said he called the pediatric ER to let them know we were on our way, so they could take her in ASAP.  Don't remember the drive down Rte 80 to Hackensack hospital, but was trying to remain calm.  They took Sofie right in and started running multiple tests.  I don't know how much time passed, but within hours, based on the WBC count levels, we were told our amazing, beautiful daughter most likely had Leukemia and she was admitted to the Pediatric ICU (PICU).    


On Sun., July 9, doctors confirmed Sofie had B-cell Acute Lymphoblastic leukemia or (B-ALL) for short, and that they needed to start treatment immediately.  


On Mon., July 10, Sofie had her first surgery under anesthesia, where doctors inserted a PICC line in her right arm, performed a bone marrow biopsy from her hip and a spinal tap, where they tested and treated with a couple medications.  Essentially, Monday her chemotherapy treatment started.   Before they could start treatment, Sofie needed a blood transfusion.  Needless to say, this was an unimaginable hard day.  Thankfully, all the procedures went well, and she was eating mac and cheese in her hospital bed by 4 pm!  At 6 pm, she had a brain scan, as they needed a baseline scan at the start of chemo treatment.  At 8 pm, she had her first prednisone tablet, which is a big part of the first phase of treatment (induction), where the goal is to put Sofie into remission.  The prednisone has some nasty side effects, lasts 5 weeks, and treatment/dosage is intense.  


On Tues, July 11, Sofie's platelets were too low, so she needed a platelet infusion in the morning.  She was also running a fever of 103.4, and vomiting.  After the platelet infusion, and lots of very strong antibiotics, her fever subsided.  Her WBC also had dropped significantly so the Dr.'s said if her other labs were OK, she could move up to the 5th flr to the ped Hematolgy & Oncology unit, and out of the PICU.  


On Wed, July 12, Sofie was moved to the 5th floor because her counts/labs continued to move in a positive direction.  This was also the day Sofie started to realize some of what was happening, and started to feel really sad.  She was told by the doctors that she would not be able to go back to summer camp, play softball or even start school in September.  Needless to say, it felt like multiple daggers to our hearts.  Sofie has been so brave and courageous throughout this past week, after being poked and prodded numerous times, which was of course very difficult for us to watch.  But, watching her break down when she was told of all the things she wouldn't be able to do for the next 9 months, was absolutely heartbreaking and definitely the hardest part of it all.    I literally felt like my heart was being ripped out of my chest.  


On Thurs, July 13, Sofie was given a new chemotherapy drug via IV, and Benadryl before it was administered to prevent allergic reactions.  The Benadryl made her fall asleep, but she tolerated the new medication well.  The drs decided they could also stop all of her antibiotics as her fever was staying down.   


On Fri, July 14 Sofie's platelets were low again, so needed another platelet transfusion in prep for her next procedure.  She was also taken off another drug protecting her kidneys, so that was good news.  Her temp also continued to hold steady, and this continued into Sat (7/15).


On Sun, July 16, Sofie had her 2nd platelet transfusion, where she had a minor allergic reaction, so Benadryl was given to prevent it from getting worse.  An Epi-pen was ordered an on-hand.  Her platelet count increased enough so she would be able to have her 2nd surgery (spinal tap) on Mon, July 17, and we were advised if all went well, she could go home the same day.


On Mon, July 17, Sofie was put under for her 2nd spinal tap; meant to test the spinal fluid and treat the leukemia with another new chemo drug.  Thankfully all went well, and while groggy and tired afterwards, we were told she could be discharged by dinner!  Sofie ordered her last hospital mac and cheese around 4 pm, and we had a long discharge discussion with her doctor about all of the meds she would have to take at home, home care nurse services and other instructions.  We got home around 7 pm and Sofie was overwhelmed by all the cards & gifts waiting for her.  We read what we could, but had to get her to bed, as it had been an exhausting day.


Reflections:  1) To all my Mom warrior friends out there!   TRUST YOUR GUT.  Your gut is always right.  If something feels off, it probably is.  We were not content with the diagnoses we had received, so we kept going back to various doctors.  2) It turns out Sofie's leg pain is a direct result of the leukemia.  Due to the extremely high WBC count, her WBCs were basically crowding out all of her other blood cells in her bone marrow, causing pain in her legs.  3) Kids are AMAZING and tougher than  you think - Sofie has literally been through hell and back this past week, and through it all, was constantly asking if we were OK (there were times we just couldn't hold back our tears).


Lastly, the words THANK YOU seem small compared to all the love & support we've been receiving.   All your messages have really meant the world to us and held us up these past 10 days.  We are going to do our best to keep this site updated to share updates about Sofie's treatment and how she's feeling, as it will be a long journey.  At the moment, Sofie is still pretty tired and is immunocompromised.  As soon as she starts to feel better, she can't wait to see her friends!  We feel so incredibly blessed and grateful and greatly appreciate all of your words of encouragement, love and support.   Thanks for visiting  SofieStokesStrong site.


LOVE & HUGS to all of you!!
Love, Stokes Family