Recovery

An Update from October:
Sleeping in our own beds is such a luxury, we have been spoiled to be at home for much of the last month. I savor all the every day tasks that I had been accustomed to complaining over. I relish the opportunity to cook dinner and put the dishes away. I am grateful to clean the floors and straighten couch pillows. Morgan goes off to school most every day, the sheer joy in this, the chance to watch her come and go every school day as if life were normal is a blessing not lost on me, for now. I know I will become complacent if given the chance to continue this unremarkable routine but in reality it is actually, remarkable.
The fact that parents of special needs kids know we could at a moments notice be shuffled back into the realm of doctors and nurses, clinical trials and iv medicines, tears and pleas of why, keeps us grateful, for a time. The lining, albeit not silver, hanging on the edge is that of fear and dread for the immense hardships she must face.

Update from today:
Early November brought more hospital days and treatment. Thankfully, Morgan tolerated it well although she has to work extra to keep up with exercise and nutrition. She is tired and not hungry but she gets up and moves and eats, even cooking for herself to stimulate hunger. We are home for now, watching for fevers and hoping and praying to stay out of inpatient for the next few weeks. we will see. Scans will be mid-December.
Thanks for checking in!

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It saved her life

After a long weekend of reflection in what seemed like an empty city over Labor Day weekend, Morgan got to work. She had a temporary line placed in her chest to attempt to pull stem cells from her blood. Days of prep went into this attempted collection with morning shots and evening shots and other wellness tricks to increase Morgan’s levels of stem cells. We did this collection thing back when cancer was new to us, when Morgan was 6 or 7 years old. She collected 3 ‘rescues’ at that time and in the last 8 years we have used them all. When she was very sick in the spring, we used her last available rescue to boost her immunity while she was fighting cancer AND a fungal infection in her lungs. It saved her life. Since we were out of cells, this new collection was very important. After having the line placed we reported to the blood donor room every morning, hooking her up to a pheresis machine to pull any stem cells that were floating around in her blood stream. The body is an amazing thing, we continually make these stem cells and they grow into things like platelets and red blood and white fighter cells. It turns out, Morgan’s body is just as amazing. All the hard work and effort paid off: over 10 million stem cells were collected- that is 4 rescues! We needed this great news after such a tough blow the week before. Stem cells are the equivalent to money in the bank and for Morgan it means she has more options for treatment.The collection isn’t easy and Morgan is fatigued and a little underweight from the stress. Thankfully we sailed into a really fun and really meaningful weekend with great friends. We put in some hard work but made the best memories at the 8th Annual Super Slugger Softball Tournament in Gulf Shores. It’s the flagship event for Jensen’s Heart of Gold Foundation and we have been blessed to attend every year. It was a struggle to get there as our flight from NY to Atlanta was delayed which left us about 20 minutes to get to our connector flight in the enormity which is Atlanta airport. With no wheelchair in sight Morgan and I quickly jogged to the next concourse only to find the doors closed to our plane and it slowly backing away from the gate. We were devastated. All this work put in to get the job done in NY and now we were watching our ride to a fun weekend pull away without us. That’s when we found Stanley with Delta. He quickly realized the situation and within 15 minutes had our plane turned around to come back and get us. Thank you, Stanley for taking care of my girl. We made it to Gulf Shores and had a great weekend with fantastic friends.
Our fun couldn’t last forever, though, we came home and then directly to All Children’s to start treatment. Even as mad as Morgan was to hear of her progression it was always her plan to get started on treatment. She’s been inpatient all week, fighting cancer again. Missing school and football games and sleeping in her own bed at night. There is an end to this and the benefits outweigh the hardships. We are praying to get home this weekend for a little time to sleep and relax before she is back inpatient again for recovery.

This story is meant to highlight a short time in the life of a child with cancer. She lives much like everyone else, going from job to job, activity to activity. She is able to do so much because of the generosity of others:

The blood donor who gave in order for the pheresis machine to be primed for Morgan’s use.
The Upper East Side friends who bought her dinner when she was feeling low after scans.
The nurses and doctors who consoled her when she was in pain.
Stanley from Delta who got her where she needed to go.
Friends to share laughs with and just hang out with when she needed a break.
Money for the extra gas for her Dad and sister to come back and forth to the hospital from work and home.
Coffee money from someone special to get that really good lemonade at Starbucks 🙂

These are simple things that even as a cancer family we take for granted. Small moments and little treats mean the world during a rough day or week. You can help give these little things to families with a child fighting cancer by donating in Morgan’s honor to Jensen’s Heart of Gold Foundation. Even better, you can buy a table to our Gold Gala (held in February) and see Morgan and chat with her about helping other kids with cancer!
Whatever you choose to do please try to make a difference in your circle this September for Childhood Cancer Awareness Month.
Thank you for following along on this journey! We appreciate every prayer, message and wish that you send.

Unexpected

In the almost ten years that Morgan has been fighting cancer we have learned so much. More than we want to know, really. About our healthcare system and it’s limits, about the resiliency of kids, compassion, love and the shear will to fight. I have lost count of the number of relapses or progressions Morgan has experienced in her time fighting cancer.

She has suffered yet another this week.

She feels great which is why it is unexpected. Disease has reappeared in many spots, too many to count. She feels great. Her blood counts and other factors that help indicate relapse are within normal ranges. The only reason we know she has disease is from her scan. All else looks good. I take a small comfort in that.

She’ll move forward with attempting to collect stem cells in NYC and then do some sort of treatment, probably at home.

If you take anything from this post, please let it be this: Morgan is no different from thousands of kids facing the same issues every day. She should be worried about school and having time to be with friends. She should be arguing with me about what to wear to the football game and how late she is allowed to stay out.

She can’t. And she is not alone.

The BEST thing you can do for Morgan is to GIVE.

GIVE your time and volunteer to raise money.
GIVE your time and volunteer at the hospital.
GIVE your time by screaming from the rooftops: kids with cancer are suffering and they need ALL OF US TO HELP.

Morgan wants other kids to have opportunities to make memories.

A Simple Thing

Enjoying a lemonade seems like a simple thing: sweet and refreshing, it’s the best summer treat, especially when you can’t have breakfast and soon have to hold off on fluids. At least every three months since Morgan was diagnosed with cancer, she has endured a full workup of scans to keep an eye on disease and general health. Each time she does this she has anesthesia which requires she not eat after midnight and only clear liquids for a short time in the morning.

It sounds easy but I will tell you, it is not! As her parents, we don’t want to eat or drink when she cannot, so we all end up starving and thirsty by the afternoon!

This morning she had a request for her favorite lemonade drink. The procedure room nurses couldn’t approve this lemonade as a ‘clear liquid’ without seeing it, so this morning’s chore was to pick it up, take it to the hospital, show it to the doctor and finally gain approval to enjoy it early this morning at the Ronald before she starts her day.

This week and next Morgan is scanning and then collecting her own stem cells to bank for future use. We need as many stem cells as we can get, hoping and praying for millions in the collection!

Saturday starts Childhood cancer Awareness Month. Please remember kids like Morgan go through days like today every day. Every day. They wait in hospital and clinic waiting rooms and hold food and drink to undergo grueling procedures. Surgery and chemotherapy are daily topics.
Please remember these kids are just kids and that is all they want to be. When Morgan was diagnosed at 5 years old we asked her what she would wish for if she could have anything in the world and she said this: to go to school and be with her friends.
We couldn’t give her that, still can’t at times but we can give these kids a chance at making memories and living life by volunteering time and donating funds.
Our charity of choice is Jensen’s Heart of Gold Foundation Florida!
Please choose to do something every day in September to show your support for kids with cancer. Be kind and share what you know. Sign up to volunteer or donate funds.
Thanks for following along on this journey with us and for your continued prayers and support.

New trial

Morgan enrolled on a new clinical trial that uses her own t cells to fight her cancer. We spent a few days in NYC last week and will return there next month or the month after to continue that trial. In between those trips she will have a small round of chemo at home.

She is feeling well although dealing with a few hiccups. We have carved out some moments of fun this summer! Thanks for checking in!

Looking Good

It’s been a tough month for Morgan as she struggled through chemo and count recovery. Everyday she works hard to eat more, move more and get better. She looks really good and her scans this week look good to her doctors, were waiting in final results over the next few days. Even though she is better, she isn’t quite where she needs to be for the clinical trial she wants to try. Hopefully, a few more weeks of rest and recovery at home will get her there. We are making the most of this summer and attempting to stay out of the heat! Thank you for checking in and for the prayers!

Chemo

Morgan’s blood counts have finally recovered enough to continue treatment. Because of the magnitude of her most recent relapse, no one on her team is comfortable waiting for treatment, including Morgan. She will undergo chemo in Tampa and St Pete this week along with other follow up appointments. Once recovered we will repeat scans and make another new plan.
She is feeling well most of the time but still struggles with nausea and lack of appetite. She is out and about as much as she can be although we are more comfortable staying close to home.
Our hope for the next few weeks is that she continues to get better, regains some appetite and has minimal side effects from chemo. We all know how strong Morgan is and we will continue to lift her up and push her to recover and feel better.

Thanks for the phone calls, messages and prayers.