Miracles 4 My'isha

#SmileThroughItAll

4 1/2 year Timeline of Neuroblastoma — September 23, 2017

4 1/2 year Timeline of Neuroblastoma

March 15 2013– Final staging and Dx of stage 4 high risk neuroblastoma with unfavorable biology MYCN amplified…. basically… she has a very difficult strain of neuroblastoma. At the time of diagnosis, the disease was in from her shoulders to her thighs and into her bone marrow.

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July 2014– after a year and a half of treatment starting with 6 cycles of alternating chemotherapies including a bone marrow transplant. Her own stem cells were harvested from her bone marrow and then given back to her on her 2nd birthday. She underwent a number of surgeries for central lines and a tumor removal that involved her adrenal gland. We did 20 days of radiation and IL-2 immunotherapy and Chimeric antibody therapy and maintenance therapy with Accutane (it targets neuroblastoma cells while clearing acne).11702869_857391011009007_2184997767334437347_nDecember 2016– My’isha fell on a new chair I got her for Christmas and broke her arm. I found a lump under her arm and it was neuroblastoma. Turns out her ulna had been weakened by the disease.

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My’isha’s arm after cast removal. Her radius is being destroyed from the inside out by neuroblastoma.
February 2016– We began MIBG therapy. Sounded very promising and it was a BIG process involving a nuclear radiated room and special procedures and precautions. The disease remained in her wrist after the radiation we did 6 more cycles of chemotherapy.

September 14, 2016– Port was removed because previous scans showed treatment had worked and she was released from therapy again.

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December 2016– Routine scans revealed neuroblastoma had returned to the same locations: her wrist and axial lymph nodes. The disease was localized to the same locations. We decided to try THC:CBD in a 1:1 ratio at about a gram a day rectally and less than 500mg orally. The disease seemed to be stable for a little while.

March 2017– Axial lymph node swelling prompted a call to oncology and a treatment plan put in place.

April 6th 2017– Port was placed for treatment for the 3rd time. We did a cycle of chemotherapy and stayed 2 weeks in the hospital waiting for My’isha’s counts to recover and had to postpone the 2nd round of treatment to give her bone marrow time to recover from a large dose of chemotherapy. After another cycle of chemotherapy, scans revealed more growth.

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August 2017– CHANGE OF PLAN: I was told by My’isha’s oncologist that radiation is a systemic treatment and is not a cure. Therefore I had been hesitant to put her through something that we know is not going to heal her but we know will cause damage. However… after chemotherapy failed… I was convinced by the same oncologist that if I did not do (radiation or the chimeric antibody again along with chemo) that I wouldn’t be worried about holes in her bones from radiation, but from neuroblastoma instead. So… we gave it a shot…. 11 days to be exact. I noticed lumps in her elbow area and her neck appear which prompted a scan that revealed that areas around the radiation site as well as places being directly radiated were showing growth.18698040_1345935598821210_5804317318042516465_n

The disease is now radiation resistant and her bone marrow can only take so much more damage…

September 19, 2017– We met with the palliative care team aka REACH to discuss how they are going to support us. It is very scary and stressful to have end of life conversations. A fire has been ignited. It is up to US… our village… to figure out something the medical field is unable to or unwilling to accept. Our current regimen is evolving. We are doing a lot of detoxes, trying to remove sugars, maintain an alkaline body, utilizing natural herbs to support natural body functions and fight the disease.

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The battle is far from over… our princess has shown signs of energy again after a rough week or so. When the good days out number the bad… our family is blessed and I feel like I am doing something right. When we have bad days… I am wanting to go back to the drawing board. We had our first set of labs and are making adjustments as needed to her diet and will continue to do so about twice a month. If you do not follow her story on FB, please do: http://www.facebook.com/miracles4myisha If you are interested in contributing to the healthy eating and natural remedies donate HERE to the #GoBaldWithMyMy campaign. We have a friend on standby ready to go bald with MyMy when we reach our new goal!

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It’s just her hair, guys. No big deal… — September 5, 2015

It’s just her hair, guys. No big deal…

135763_10151069031322073_2048460913_o …or so I thought.

How long does a mommy wait to put her baby girl’s hair into pony tails?

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I waited 3 boys and 10 years to finally have my baby girl. I had been practicing since I was a little girl for this moment. I could not wait to braid her hair and do pony tails…

…and then one day, she was staring Neuroblastoma in the eyes, in her piggy tails.

My'isha staring Neuroblastoma in eyes.
My’isha staring Neuroblastoma in eyes.

After her first cycle chemotherapy, things began to change. 884496_10151349277792073_690425226_oI was finding more and more of her hair in her bed. When she slept and played, it was like there was a long-haired puppy in the crib with her. It bothered me to see her hair all over the bed throughout the day.

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So I talked with the nurse. She was starting to get small bald patches in her hair and I wanted to keep her curls and be able to share them with my mom and mother in law. This is her first haircut, right? It wasn’t like we could just go to a hair salon. So I started with the sides first.

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Her top pony tail was just too cute too cute off. So I left it alone. However, the next morning was a reality check. I didn’t know if my cutting her hair triggered more loss. It was unlikely, but what I did know, was that there wasn’t much time to save what was left. So…

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I cut it off… I cut it all off! I cried and I cried. I could not look at my daughter, my one and only, my long awaited baby girl, without crying. I felt awful for taking it all away. Taking away what we waited so long for. For the first time, I had to call my mommy. I really could not look at my own daughter without crying my eyes out.

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I let go of the blame. I realized it wasn’t me that took her hair. It was the chemotherapy that took her hair. As cruel as it seemed, it was necessary to keep my baby girl alive. It wasn’t long before I realized, that her hair was just the beginning.

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She soon lost her eyebrows and eyelashes too. Her whole head was baby bottom smooth. Her scalp was dry. The worst and most obvious part, was that now, she officially looked sick. She looked like a cancer patient. If there was ever a moment of reality, this was the first. I used a little oil to moisturize her scalp, but now…

…she really IS sick.

The chemotherapy is beginning to take it’s toll on her digestive system. She quickly loses most of her ability to taste, as well as the desire to eat, or even hold food down when she does want to eat.

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Her hair quickly became one of the least of our worries.

Soon, her beautiful, shiny, smooth bald head was just another fashion accessory, along with her NG tube and my various tape jobs..

Thanks to another family Beth and Mia McDowell, we were inspired to embrace her new beauty!

That is how tattoos became a part of My’isha‘s therapy, and a fun hobby to bring more awareness to childhood cancer. Not to mention it stopped people from mistaking her for a boy.

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We had such a great time with them! I appreciate the inspiration and hope the warriors at 10-Strong provide to families at the Children’s Hospital in Oklahoma City. They were just great, and I couldn’t imagine starting our journey anywhere else!

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