Good to be Home

Our time at home has been wonderful as home bears special healing powers not found anywhere else! This has been a time of recovery for all of us after navigating weeks of uncharted territory: in all these years Morgan has had hurdles but never of this magnitude. We are so blessed to have family and friends surround us with love and support, being here for us and knowing just what we need, when we need it. You all know who you are and we thank you even though those words will never be enough to express our profound gratitude. We promise to pay it forward, every day.

Morgan is working very hard to eat and gain back some strength following the grueling treatment and recovery of the last two months. She is deconditioned and wearied, not hungry and sick of me asking her to eat! This girl is stubborn so we continue to boost her up and work on improving her appetite and her endurance.

She has not been strong enough to return to school yet and has been in clinic several days per week. We think her blood counts may finally start to recover and will keep an eye on those. Once that happens we can make a plan to continue some sort of treatment. She is too afraid to wait too long before continuing on some kind of treatment, especially since she had such a good response from the most recent chemo regiment.

Thanks for checking in.

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FYI

We are almost home yay!

Anything mailed to the Ronald McDonald House in NYC that shows up will most likely be returned to sender, their policy is they don’t hold mail. If you’ve sent something and it comes back to you we’re sorry we missed it and thank you for thinking of us.

Headed Home

Morgan’s scans were almost clear, the doctors were amazed at the improvement but as always we have to wait for the final results. Her counts are recovering slowly and she’s still needing blood and platelet infusions periodically. She’s still having pain and exhaustion with any physical activity along with fighting a fungal infection in her lung.

We will take a few weeks off to recover and get ready to formulate a plan for treatment moving forward.We are very happy with the scan results but this treatment was harsh and unforgiving on our girl, this is not the end of the battle it’s just the beginning, we cannot let our guard down, we cannot take extended time off anymore, we have to be vigilant and on point from this moment on.
Thank you again for the support, love and prayers. We could not do this without our family, friends and community in our corner, the weight you all take from our shoulders is unexplainable.

Regroup and recover

Last night after a platelet transfusion we brought Morgan back to Ronald McDonald house after almost three weeks inpatient in at Sloan. What a long and scary three weeks she endured. She is very tired, fatigued and still in pain from prolonged neutropenia and infection. She still has a long road to recovery. I was honestly waiting to post anything incase we had to go back inpatient! We will be in the day clinic every day this week, checking counts and getting scans. We will hear from the doctors Thursday what their recommendations are for the next steps. Much of that will include reconditioning and recovery.

Thanks for checking in. Webare grateful for our village, near and far. I’ll post again soon.

Small changes

Since our last update Morgan’s white blood cell count has completely recovered. With that comes healing and with healing comes pain. Along with general deconditioning from being so sick for so long, she has been fighting an infection in her lung. Now that the ANC has recovered her body is in overdrive trying to get well hence the pain. She is really ready to break out of the hospital and for the first time in three weeks I am comfortable taking her. It’s all up to the doctor here whether she stays or goes, we will see what he says. Even if we do leave the hospital we will be in NYC for a while. Morgan’s other blood counts need to recover before traveling and we also plan to do a complete work up of scans.
Thanks again for the calls and prayers and messages. And the cards and gifts, too. We appreciate how much you all care about our girl.

Another Sunday in NYC

We spent our Easter Sunday in this cold and windy city, hard at work. The pay we’ll receive from our efforts isn’t going to buy us anything fancy or help us with the mortgage. The pay we’re hoping to earn is good health and a chance at more life.

Our sassy Sparklyflower is coming around and getting a little better every day. This has been so tough to watch and even more difficult for her to go through. It has taken weeks for the doctors to figure out how to help Morgan heal; finally they think now we are on the right path.

Simple tasks like walking for more than 2 or 3 minutes have become too taxing for Morgan. She hasn’t been allowed to eat and she is stuck inpatient, far from home only allowed to sleep a few hours at a time between beeping machines and watchful nurses. This long road is far from over but we will get her better with many more weeks of work and time.

We appreciate your calls, messages, gifts and prayers. Those plus the blessing of lifelong friends swooping in to hold the pieces together are getting us through this awful time.

Thanks for checking in.

Inpatient

High dose chemo is tough for anyone to get through and it has not cut Morgan any slack. She is getting daily platelet and blood transfusions, spiking fevers daily and cannot eat due to breakdown of her throat and esophagus. This is harsh stuff. She is mostly sleeping with periods of wake time to chat and watch tv. We expect to be inpatient and requiring blood support for several more weeks. Thanks for the calls, messages and prayers.