Team Harley's Leukemia Fight!
It has been a while since an update here. Im not sure who on here follows Team Harley on facebook so I thought I should post in here .
It has been *almost* a year and a half since Harley was diagnosed and the GFM blew us away qith your kindness, support and generosity.
You all made it possible for us to take our minf off financial stress and just focus with being together as a family.
You made it possible to trade in a car on its way out for one better able to make it to boston back and forth safely for scheduled and emergency visits, which there have been a lot of both the past year and a half. A .LOT.
More than I could even wrap my head around when we were inpatatient for the first part of treatment.
Your support made it possible for us to pay bills , get prescriptions, keep life somewhat normal at home for the other two kids whil Harley was inpatient with me.
Your donations made it possible for my husband to stick around and heal from the news before having to return to work. From the condition Harley was in.. to the diagnosis none of thinks we will ever hear for our children. ..it was LIFE changing.
You all made it possible for us to learn this new way of life together, pull together and to go through her first 2 months of outpatient treatment together without worrying about sitters, being alone.
Being there to support our other kids while Harley had multiple spinal infusions requiring anethstesia all in one month. While Harley had to go back again for blood transfusions. We were able to stick together all because of your generosity.
Although I havent updated this much, I think about this often and still am blown away and forever thankful. We had no idea the financial issues that come up and my god this was needed.
I can not even beleive we are almost a year and a half in. Life has stood still yet flown by at the same time.
Harley is doing as expected. A few bumps along the way, but overall kicking butt. The treatment is pretty intense. Its more than I realized in the beginning, but each cycle start is another crossed off on the countdown.
This girl is my superhero. She has danced during blood transfusions, rocked a bald head.. braved more than weekly port accesses over the past 16 months outpatient.
Shes had lots of ER visits.. a few hospital stays.. but she pushes through.
Throw up became a normal daily occurence. Leg pains. Muscle aches. Sleepless nights.
Tears . Anxiety. Lots of snuggles.
The chemo makes her food taste funny, but the high dose steroids make her HANGRY. .. and also gives her intense mood swings. Shes developed PTSD. Control issues. Mood swings like Ive never seen...
The effects of chemo suck but are saving her life.
Over all.. through all the bad... she has pushed through. She laughs. She dances. She LOVES. She shares. Shes had a lot of gifts and opportunity and the first thing she thinks of is making sure she can share with her siblings. Shes truly my hero.
She thinks the cancer ribbon says Cancer is stupid, and I think she is right!
She loves giving to other kids at clinic. She teaches us all what life is about. In every little thing she finds joy.
This Cancer journey is tough... buy my Harley Mae is tougher.
15 months DOWN..8 Months to go.
Thank you all, again.
God bless you all, Jenn
Harley's Gramma here. Just wanted to update you all. Harley is on day 18 of her treatment and thed doctor's say she is right where they expected her to be at this point in the treatment. She has been painting, snuggling the stuffed animals that everyone has sent, loving all of the pretty pjs and dresses too! Jill and Mike are overwhelmed and thankful for all of your support and prayers! The rest of us are amazed at the incredible generosity and outpouring of love. Thank you each and everyone!!
I just want to thank you all so much. We are out of the hospital. Done with induction..and are now on the 2 year outpatient journey where there will be lots of trips to Boston for all day appointments. Busy days. Rough days...long days... but Harley is a trooper and her energy through this inspires me. ♥ My car could hardly make it around some days, never mind in and out of Boston, especially with a sick child. We have been able to get a car better for our family needs and I am thankful to you all. You have helped with bills we have already had coming in and made our stay at the hospital a little more comfortable. ♥ Thank you for all the love and support for my girl xox
I'm not sure who will see this.. but if you're still getting updates.... Harley is DONE with chemo!!! I posted about 8 months ago thanking you all and saying we were near the end of treatment and here we are!!! She's on ONE med until September ..but it's not chemo!! Wahoo! She's thriving and so far her monthly visits and labs off chemo at the jimmy fund have been great. I know that not everyone here is on our Facebook support page so I thought I would update again!