Burkley’s Story

Site created on February 23, 2021

Welcome to Burkley's CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement!

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Newest Update

Journal entry by Caroline Ford

Hey All... 

We came back to MUSC yesterday for cycle 2 of chemo. She has  received her first two doses of chemo and so far she is doing pretty good, but I can tell she is a little nauseous. It is so hard to tell with a 3 year old because she doesn't know how to verbalize this feeling yet, but she is definitely showing physical signs of nausea, but no vomiting. We are hoping the around the clock nausea medications will do the trick. This is the same chemotherapy as she received during cycle 1 and it is considered an "easy" chemo meaning there are generally less side effects like nausea, but she still had some nausea and vomiting last time. Cycle 3 and 5 will be the hardest chemos so we are not looking forward to those. 

The biggest bummer during this hospitalization so far is that she is still on isolation from testing positive for the rhinovirus (common cold) 2 weeks ago. She can still drive the little green car around the unit (and trust me we are going to need to buy new wheels by the time we are done with MUSC) and we can go to the outdoor play area, but she cannot go to the play rooms in the hospital which is one of her favorite parts.  Just a small bump in the road though! 

Hopefully we will be out Monday.  After that I will start giving Burkley daily shots in anticipation for Stem Cell extraction. The plan as of now is to go in on Monday  the 19th and complete the extraction on the 20th. There are A LOT of variables to this plan. Lab work will dictate if we can extract Tuesday or have to wait longer and then the extraction process could take anywhere from 1-4 days. While they are doing the extraction she will in the pediatric ICU lightly sedated so that she doesn't move as much and pull out the extraction tube. Then the stem cells will be frozen for in a few months when she is ready for transplant. 

Since I last updated everyone on here, Burkley has been doing well! Lots of bike rides, driveway chalk art, soccer, Power wheel rides,  egg hunts, and the Easter Bunny even came to visit in our driveway! The one noticeable change since I last posted is Burkley's hair. Dr. Anca, the oncologist, had told us her hair would start falling out about 2 weeks after chemo started and suggested we cut it short before this happened. Due to her immune system and the hospitalization, we put off the haircut till almost exactly 2 weeks. So on Saturday the 3rd, she got the cutest little bob haircut, but in just 2 short days, most of her hair had already fallen out. I'm not sure what expected, but this happened much quicker than I anticipated. The hair falling out  was bothersome to Burkley. It was itchy, messy and generally stressful. Waking to a pillow case covered in hair doesn't feel normal to anyone, but definitely not a three year old who is clueless to this process. So we went back on Wednesday the 7th and buzzed her hair. 

Like almost everything in this process so far that has to do with Burkley's bravery and strength, the haircut went better than I would have ever expected.  Sure, we had to bribe her slightly with ice cream, but she she really wanted the mini bottle of water at the salon and the donut Ashley offered her to get her in the chair.  She sat through the haircut like it was nothing and  since it was buzzed she has only brought up her bald head a few times, no tears involved (at least on her part). The hair falling out is definitely very emotional and hard on us. There is nothing stranger than bathing your own child and the hair falling out in clumps. I will be the first to say she looks SO darn cute without hair, but I'm definitely still getting use to not seeing my sweet girl with her signature hair bow.  Burkley was born with a head full of hair and has always had lots of dark hair.  Even on her ultrasounds in the womb the technicians would comment on her full head of hair. So we've literally never known her without hair.  But the real slap in the face is the daily reminder that she is sick and no longer a "normal" kid. This is hard the part because there are so many moments we just literally forget she is fighting for her life because she has remained so energetic and generally happy.  But I've shed my tears over her hair and I'm moving on because it is just a very little bump in the road in our very long journey! 

As usual there are endless people to thank.  Shout to Ashley Cooper (hair stylist extraordinaire) who had the hard task of cutting and then buzzing Burkley's hair. I'm not sure that she really wanted to add Chemo cut and buzz to her resume, but there is no one I'd rather ask than her. Thank you to everyone who has brought meals to us in Georgetown or Charleston. The time and money we have saved from shopping, buying, prepping and cleaning has allowed us to spend more quality time with our kids and to use those resources elsewhere. Thank you to those who have done lemonade stands and fundraisers for Burkley's treatment. Thank you for those who have given money, gift cards, clothes, food, toys and more.  We are just blown away with everyone's generosity! Thank you to everyone who continues to reach out, check in, and offer to help in so many different ways.  Even the little things, like the egg hunt in our yard that others planned, makes a huge difference. Every little task that you've done for us has helped! Thank you to everyone who continues to keep us in their thoughts and prayers. 

Specific Prayer Requests for Burkley: minimal nausea,  good appetite and weight maintenance, continued strength and energy, no infections/fevers/hospitalization after this next cycle of chemo, and for the stem cell extraction to go quickly and seamlessly. 

If you've made it this far, thank you and I'm sorry I always seem to write a whole novel! 


Thank you to all! Caroline 

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