I have so much to report here.
I will start with Reese’s health. We met with endocrinology last week and then with our bone marrow transplant team this week. Reese’s new endocrinologist is NOT surprised that Reese continues to have adrenal insufficiency. It makes sense after her high dose steroid use, and it should take 1 – 1 1/2 years to correct. (I did not know this.) Once Reese is off all immunosuppressants (more on that later) we will begin tapering her hydrocortisone below a physiologic dose. Very, very slowly, because this is a big deal. Her body depends on a physiologic dose to function, because she isn’t making her own- yet. And each time she gets sick we will have to shoot back up to keep her safe… it’s complicated and it takes time. But I remember the days I dreamed about having “problems” like this… things to overcome that have a good SOLUTION! A solution that is supposed to work, with great success rates, if you put in the time and effort.
I have a wise aunt who once said, “Is it impossible or is it expensive?” as a response to someone telling her something CAN’T be done. I love the spirit of this and I have used it many times since. Most things CAN be done, and that’s how it should be. The question is the “expense”.. what are you willing to do to get yourself there. “Expensive” doesn’t scare me, impossible does, and we have faced impossible many times and thank God my little Reese prevails.
Also on the docket with endocrinology was the matter of Reese’s height. It isn’t a secret that she hasn’t grown since early ’18. The reason it isn’t a secret is because she has an identical twin who towers over her. Reese doesn’t care, at all. In the same way that she never cared about her hair. She is too wise to bother herself with such superficial things. I hope she keeps a little of that, what a gift.
Now, as her mom I do bother myself with these things, and I know that I am in a good place when I am writing about height and hair!! So I can tell you that they are not concerned about her height, she will grow, once she is off all of these meds. And her hair is coming in dark and fabulous, framing her sweet tiny face, that looks like Quinn’s again.
Our meeting with our transplant team was incredible. Meds were cut and we were given a final schedule. Yes, a plan to get her off her meds and vaccinated!! It looks like this: Jakafi is off completely. IVIG is being moved to every 4 weeks, vedolizumab to every 8 weeks. (Vedo is her last immunosuppressant.) The vedo will be discontinued after two more cycles. At this point we hope to do the same with IVIG (because her B cells are up and running! They are almost where they need to be. Hoorah!) Once Reese is off immunosuppression and IVIG she can begin her newborn vaccinations. This will happen around Thanksgiving. Once we start, it takes about 1 year to vaccinate and get up to date. Now I pray that removing Jakafi doesn’t stir up any problems and she stays as stable as she has been.
Next, Lemonade 4 Leukemia had an incredible kickoff weekend! We raised over $10,000. That’s right! Many of you helped us get there, either at our stands or virtually online. THANK YOU! This incredible effort will make a difference! For our grand opening we had 13 stands in Winnetka and a total of 22 around the country. And new stands will be popping up this upcoming weekend! Every day I get a message from another teammate who wants to host a stand and fight with us, a battle against childhood leukemia!
If you are interested in hosting a stand, please email me and I will send you a jpeg of our banner and/or poster. We would LOVE to have you join our effort! firstname.lastname@example.org
Reese made it on NBC on Sunday and Monday and two papers picked up our story. This is so wonderful for awareness. Please, share marketing ideas with me if you have them or know someone… ways to reach a large audience! I am still learning and I can use all the help I can get!
I will attach a YouTube of the NBC coverage to this. And I will post pictures of some of our amazing lemonade stands in the site gallery. It is heartwarming to see all of these pint sizes sales people, helping others the best way they can. Selling lemonade.
Our website: www.lemonade4leukemia.com
Oh, and Reese decided this weekend that she wants to be a doctor.