Quick Update

I have so much to say but not the right words to express my thoughts, so I will stick with the basics because I know so many people care about Morgan and are genuinely concerned about her well being.

We are in NYC for scans this week. It is safe here, everyone is masked, washing hands, and keeping distance.
Morgan presented with more pain a little over a week ago, and her blood counts are struggling to return to normal.

Please send positive thoughts, well wishes, and most importantly, prayers for her physical comfort, her mental health as she deals with a relentless disease that won’t loosen it’s grip on her, and for a good outcome here in NYC.

We continue to support her needs, and out family has been well supported by family and friends.

Thanks for caring about our girl.

Twenty-two days

Five days of chemo, four hospital rooms, three oncologists, two tired parents, one (mostly) pain free patient!Morgan broke free today from a very long stay impatient in St Pete. She had so much pain three weeks ago, and has been through so much, more than I could describe today.
Grateful for prayers, thankful for support of friends and family, appreciative of amazing nurses.
No plans for now other than home and rest.

Negative for COVID

An experience we won’t soon forget, Morgan tested negative for COVID. We are so relieved. She returned to the regular oncology floor Saturday, fighting pneumonia with no white blood cells: we hope her stem cells will soon grow into new white blood cells and help her heal. The team of providers are steadily working to help her overcome this new hurdle and feel better quickly. She is tired and hurting from coughing fits. Pneumonia is a struggle to manage in an otherwise healthy person, this will be a much longer, more difficult road for Morgan.
We spent Easter the same way we have spent the last two weeks: separated. Due to COVID, only one caregiver is allowed to be with Morgan in the hospital. We have to change shifts at the security desk. One daughter quarantined at home, one daughter quarantined in the hospital, we do our best to go back and forth, chatting for a few minutes with each other (and the security guard) at shift change. We would continue indefinitely if it means getting Morgan through this battle. We continue to follow her lead and support her with every ounce of energy we can muster. Although we are all sick of being stuck at home, this is a path we are accustomed to following. Cancer families know the drill: wash your hands, cover your cough, stay away from sick people, stay home when counts are low. Avoiding restaurants and grocery stores are common when your kid is in treatment, and screening friends and family is a regular thing. We joke that this is the time we’ve prepared for the last twelve years! If anyone knows how to quarantine, it’s a cancer family!
If her counts recover this week/weekend, she may be able to go home next week. She is ready to get back in the kitchen and quarantine!

Not a good time to have cancer

As if there would ever be a good time to have cancer, now is definitely NOT one of those times.

Morgan spent the first part of 2020 exploring a new option for treating her cancer. An FDA approved drug for adult cancers that showed promise in a few kids with neuroblastoma. It offered a lot of home time and minimal side effects, and at first, it seemed to be working to reduce her pain and disease burden.

It was not able to give her lasting relief, and her pain returned at the peak of this season of uncertainty due to COVID. Along with pain, disease and years of chemo wreaked havoc on her bone marrow, leaving her platelet-dependant. A decision was made by Morgan and her team to try a moderate chemo regiment followed by a stem cell ‘rescue’ of her own harvested stem cells. The stem cells, we hope, will fill her marrow and grow into healthy blood cells, so she won’t require weekly transfusions.

We checked into All Children’s in St Pete on March 30th, after nearly three weeks of self-quarantine for Morgan’s safety, to start five days of chemo, followed by stem cell rescue. All was going as planned, until last night. Morgan had a cough for weeks, normal pollen-related stuff that developed into something much more severe over a few short days.

Long story to say- her stats began to drop, a chest x-ray showed pneumonia, and since we are in a pandemic- she and I were carted to the ICU for Morgan to be tested for COVID. I am isolated with her, neither of us is allowed to leave the room, and the nurses treat us as if we were positive, with all the gear and precautions that come along with this deadly disease. It was a scary night that turned into morning with no sleep and not many answers.

We are still waiting for her results. We don’t know what will happen next.

We do know that she feels a little better this morning, she isn’t requiring as much oxygen, and we are finally, at noon, laying down to get some sleep.

Please pray for those in the hospital today, tomorrow, and in the months to come. The providers and the patients. This is a very scary time. It may not look like it at the grocery store or the beach but this is serious. Please stay home. I would give almost anything to have Morgan SAFE AT HOME.

Thanks for your prayers, we know our girl is loved by friends near and far. She is inconvenienced, annoyed, and tired. She is also ready to see her friends, get in the kitchen to cook, and sleep in her own bed. We all are.

Patience and Grace

Learning to breathe with patience and grace. In the last six months, I have started many updates but couldn’t seem to get the right words out of my head into my keyboard. I realize I haven’t been patient with myself, as time was needed to step away and process thoughts and feelings before sharing our life again. Grace in just living in the day to day, feeling emotions, and appreciating life.

We have been home more than we have been away since my last update. Settling into a routine always comes quickly for our family, we are able to pick up and move miles away to create a temporary home, whether that be NYC or St Pete. When the work is done, we settle back into home life for our allotted time, appreciating the feeling of making early morning coffee in our pajamas or sitting on the porch until late at night to feel the breeze. I appreciate this time, now more than ever, as our girls are getting older and becoming more independent.

Morgan completed a few cycles of chemo+antibody before embarking on yet another new treatment journey in February. She received a treatment that is FDA approved for adult endocrine cancer patients. A special scan revealed that her cell are susceptible to this particular drug, so we gave it a try in NYC last month. She was having pain from disease at that time, and we are grateful that her pain seems to have decreased. We are in clinic several times a week for transfusions, and she feels tired with some migrating pain. In order to know how well this treatment worked, we need to have another special scan done in NYC. We are awaiting guidance from her team there.

Please keep her in your thoughts and prayers, specifically that this treatment is working to minimize or clear her bones of cancer, and that her pain continues to diminish. We hope that she is able to keep up with nutrition to get stronger, and for her to rest and heal.

We are keeping our distance from others as much as possible, I hope you are all able to do the same! Not only for Morgan, but for every person who could be susceptible to this very contagious virus.

Sunlight and Giving

Every year, through a few different events, our family tries to ‘Pay it Forward’ by volunteering our time raising funds for other families like ours. We have been surrounded by love and support through nearly eleven years of Childhood cancer treatment so it is important to us to find a way, albiet small, to pay forward the love and giving we have received.The Super Slugger Softball Tournament is one of those events. Morgan insisted we try to attend, even though she was in pain and receiving chemo treatments last week. Our friends, as usual, welcomed us with open but very busy arms as we were able to attend the tournament but take more of a backseat to working. Being surrounded by love and laughter is some of the best medicine.
Morgan finished chemo Saturday. We got some IV fluids in her that day, as well as lots of rest and minimal heat exposure. We all enjoyed our time and tried to help where we could. Morgan is renewed having put forth a great effort to help. The tournament was perfect and a lot of money was raised for kids in Baldwin and Mobile, Alabama counties. We are so appreciative to everyone working and playing for the opportunity to take part in this annual memorial event. Check out their Facebook page to learn more about it. 🙂

We are on our way home. Morgan is almost pain free, still nauseous and tired. She will work on nutrition and rest while we keep an eye on her blood counts and give her a few weeks to recover before deciding next steps. Thank you all for the messages and prayers. Please keep them coming.

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Disappointed again

Our five weeks in NYC trying to use a new clinical trial were wasted. Morgan did everything required of her and followed the trial to a T. The doctors had very high hopes as they had seen a good response in some other patients. It wasn’t meant to be for us.Last week, we traveled for scans to get an idea of whether the trial had worked. It did not.
We don’t have final reports yet, but the scan looks much worse. In addition, Morgan has developed pain over several areas, severe at times. She is tired and not hungry. She is mad to have spent over a month away from her home and friends. She had her hopes up. We all did.
Chemo started again today. We need all the positive thoughts, well wishes and prayers we can get: for her pain to stop, for the chemo to clear some disease, for her to feel better.
We appreciate everyone who has offered help, sent messages, and given prayers. Please keep them coming.