Miracles 4 My'isha

#SmileThroughItAll

Category: Fundraiser

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

4 1/2 year Timeline of Neuroblastoma

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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.

It was hard to tell what she was doing sometimes. She seems to be coloring and watching TV here… but what are her feet doing?
My’isha thinks she is ready to go. Although, she is only going down for scans and she is putting the shoe on the wrong foot.

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!

To chemo or not to chemo… that is the question. — January 2, 2017

To chemo or not to chemo… that is the question.

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I have to be honest…. I am still on the fence about the chemotherapy. I am feeling good about our natural approach. I have been making changes and increasing her cannabis does. I am wanting to get more consistent with the baking soda and apple cider vinegar. There are so many ways to attack this… I am just not sure I am ready to expose her body to more chemotherapy. She is still so young. 

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My’isha with her legs up on her daddy after making a mess of the house on Christmas 2016. Just kidding about the mess of course.

So just to update those who do not know, My’isha has had a relapse of neuroblastoma in the same bone, same location it came back in 2015. This is just 6 months after ending 6 cycles of chemotherapy and MIBG therapy. We have a few options… more than we discussed in detail, but it basically boils down to 1 of 3 options. We can do radiation alone. Which is NOT a curative treatment according to our oncologist. Use chemotherapy along with the radiation. Which has a higher response rate, but may or may not cure the disease. Or we can go all out and use the same antibody therapy we used 3 years ago along with chemotherapy. The antibody therapy has the highest response rate. However, my daughter has serious side effects to the antibody drugs. They have had to stop the medication early in the past. I am not ready for that. So the debate is between radiation plus chemo or neither for now. If I choose to go with nothing for right now, we will come back for follow up scans.

I want chemo to be a 2nd choice…. AFTER the natural regimens, diet changes, etc. I have just started making the changes I should have been making months ago, so I want to give myself and her body a chance to learn how to do this naturally. I know the first relapse was because of failed conventional treatment. Is this relapse because conventional treatment failed as well? Or because I have not been utilizing the natural remedies correctly? Or because the natural treatments will not work for her? Or does none of it really matter because her body is going to create neuroblastoma cells no matter what we do?

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Waking up from anesthesia after bone marrow biopsies and MRI of wrist- Dec 16, 2016

To me… it begins with the food she eats that nourishes her body. I feel like that is the beginning. Taking a dietary/nutrition class will be next on my agenda for sure. I also know that we are surrounded by under-utilized natural cures and resources. So why would I force my child into a damaging treatment when there may be a less evasive way to handle this for now.

My’isha is genetically special. I feel she will need a cancer fighting regimen for the rest of her life to be honest. We need to figure out her personal healthy lifestyle and make it her lifestyle. This is a huge undertaking as a mother. Especially when cannabis is included in the mix. I am determined to have this all figured out for my baby girl sooner than later. This way we can work hard on helping other babies in a similar struggle.

I want to keep My’isha alive and healthy. How do I do that? Unfortunately, no one has the answer for that. We are thrown many treatment and therapy options. If the doctors don’t know, how am I expected to know?  Ultimately…  the decision for everything from what she eats to the treatment is left to me.

We have more scan coming up and possibly radiation and chemo depending on what we decide. To contribute to travel, food, and natural treatment costs not covered by insurance, donate HERE > Paypal.me/Miracles4Myisha

 

Neuroblastoma has returned, but to what extent? — January 30, 2016

Smiling through it all. Waiting for scans and bone marrow aspirates.

Neuroblastoma has returned, but to what extent?

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My’isha and I spent 2 days in the hospital to determine how far neuroblastoma has been able to spread across my baby girl’s body. We went with a CT scan and an MIBG scan to look for tumors and/or neuroblastoma cells that are still reactant with the MIBG test. Her Dr also did a bilateral bone marrow aspirate, where she pokes holes in My’isha’s iliac crest and draws not blood, but bone marrow from within the bone. Of course she was sedated, which was close to a total of 3 hours sedation total. We didn’t leave the hospital til close to 5, so I knew I wouldn’t get any results until the following day.

The life of a cancer family mostly consists of waiting and worrying. So that is pretty much what everyone who knows and loves My’isha has been doing for at least the past week. When we got the positive neuroblastoma on Jan 21st, 2016 from her lymph node, we have all been sitting on the edge of our chairs biting our nails and crying and praying and worrying. I knew what I was in for today… everyone has been waiting to hear results. Her daddy called me 3 times this morning, my mom called, my dad called, her titi text me… I knew what they wanted, but it wasn’t until I picked the boys up from school and was eating lunch at my mom’s house that I finally got the call.

Dr. Macy told me that the neuroblastoma is only in My’isha’s lymph node under her arm (another lump formed days after the original was removed for biopsy) and in the bone of her forearm. There is no sign of disease anywhere else in her body. Her bone marrow does show a very low count of neuroblastoma cells as well, but nothing like what we were all prepared for. We caught the disease before it could take over!

I guess I can give myself some credit for staying on top of everything, from her weight, to her arm, to the lymph node… it has been a wild couple of months, leading into an even more wild few months. I don’t want to make plans or set goals, because cancer… especially neuroblastoma is unpredictable and we really don’t know what the rest of our year is going to look like. We will prepare for the worst, but remain positive and realistic. Sometimes what may seem a bit far fetched, is still very possible. I don’t think it was in our favor for the disease to be as localized as it is, but I knew it was possible, and I told everyone what the best and worst case scenarios were and we ended up with the best case scenario witht the given biopsy results.

We are in for a lot of traveling back and forth from Colorado Springs to Denver. We are doing our best to keep life as normal, not for ourselves, and not just so My’isha has a normal like to come back to, but also for our boys. We need to all stay focused on school so we can help take care of My’isha and eachother.

So far, the schedule only consists of a central line placement surgery next week. We will meet with her Dr to discuss treatment plans and schedule that day. We need to keep positive and hope the neuroblastoma cells respond to treatment and we can eradicate her little body of the evil cooties with as little damage to her as possible.

Be sure to follow Miracles 4 My’isha on Facebook. If you are interested in contributing to gas, food, hotel stays, or anything else, you can purchase merchandise from Creations 4 Miracles 4 My’isha on Facebook or click HERE to make a donation right to her PayPal account. Contact us at Miracles4Myisha@Gmail.com for more info or questions. Thank you all so much for reading and the continued support. Don’t forget to smile through it all!

She beat cancer over a year ago, so why so worried? — January 15, 2016

My'isha being My'isha. Beautiful and happy as always.

She beat cancer over a year ago, so why so worried?

/Mommy (Aisha)/Leave a comment

My’isha finished treatment July of 2014. It took just over a year to clear my daughter of the stage 4 neuroblastoma that tried to take over my baby girl’s body. Some people don’t realize, that the treatment itself can cause secondary cancers, not to mention the recurrence rate of around 40%. This explains the CT scans every 6 months.

So, when my daughter looks like she is starting to loose weight, I contact her PCP to check on her weight gain…

And when, according to her chart, she shows no significant weight gain for close to 6 months, we order labs…

And when the labs come back “reassuring”, we wait for her next set of routine scans…

So, when they see a swollen lymph node under her arm pit, we keep an eye on it…

And, when I notice it has grown in just 48 hours, I contact her PCP again…

And, when she says she wants it out in a week for biopsy, we go to see the surgeon.

So, when the surgeon examines the lump under my daughter’s arm, and says it is concerning and he wants it out sooner than later, and he proceeds to tell me WHY My’isha’s oncologist does routine scans, what do we do now?

Now, we wait. We wait for surgery. We wait for pathology results. We wait for phone calls.

We enjoy this somewhat normal life we have now. We enjoy each other. We enjoy our princess warrior as she is today. We wish for the best. We prepare for the worst.

Living the life of a cancer family is not what I had planned for myself and my family. It seems this life choose my daughter and because My’isha is the absolute most amazing little girl we have ever met, we chose this life right back.

We will be starting My’isha on CBD this week Some people may not agree with our decision. Yet others may criticize us for waiting so long. All I know is that as mothers, we do our best to make the right decisions for our children. I do not know what is under her arm, although I have a pretty good idea based on how quickly it grew and it’s unresponsiveness to the antibiotincs.

Best case scenario: They remove it successfully with no complications. Benign and no further treatment. <<<< This is what we are hoping and praying for folks!

Donations can be made direct to Miracles 4 My’isha’s paypal. We also have #NoOneFightsAlone keychains, car magnets, and gold pins, as well as handmade hemp items listed at http://www.facebook.com/Creations4Miracles4Myisha

Please share our websites and blogs as well. As always, #SmileThroughItAll and THANK YOU so much for reading. #ANewKindOfMommy

To paint, or not to paint… that is the question — November 2, 2015

Paint or don't paint... that is the question.

To paint, or not to paint… that is the question

/Mommy (Aisha)/3 Comments

I found this free dresser for My’isha the other day on Craig’s List.

Free dresser I found on Craig's List
Free dresser I found on Craig’s List

When I went to go pick it up, I thought it would be a fun project to paint and fix. However, I wasn’t expecting it to be in such good condition. I mean, yeah, it can use a paint job, but it had already been repainted. Other than the paint chipping in place, the water damage to the top, and some paint or nail polish stains, it is in GREAT condition.

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Stains and water marks on the top of the dresser I found on Craig’s List
The gentleman that gave me the dresser also gave me 3 pails of paint and painting supplies including paint brush, paint pan and liner and a roller brush. He was setting me up for a fun paint project and getting rid of a bunch of paint in the process.

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Chipped wood that has already been painted over.
When I got the dresser home and in the house, I set it by the back porch so I could get it ready for painting. The more I looked at it, the less I wanted to take the chance of messing it up. When Mikey started telling me everything I needed to do to prep it for painting, I really started debating.

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I know it is not perfect. It was free. To paint or not to paint is the question.
So, here is my dilemma, do I paint this dresser, or not? I already lined the inside of the drawers, I wiped it down, and I fixed the divider between the 2 top drawers. This will be my first big painting project, so I am not sure how well I will do. Is it worth the risk and the extra work of repainting at this point?

Creations 4 Miracles, gifts for childhood cancer warriors — September 20, 2015

My'isha's B.M.T bithday was on her actual 2nd birthday.

Creations 4 Miracles, gifts for childhood cancer warriors

/Mommy (Aisha)/1 Comment

Creations 4 Miracles 4 My’isha 

I began by making shirts for Stevie Tre and My’isha on her first birthday. Thinking back, I had to have been inspired by the boutiques I was shopping at for My’isha in Oklahoma and Colorado Springs. I managed a Chuck E Cheese in Oklahoma City and I saw my fair share of SUPER CUTE birthday party themes, and I couldn’t go to my job with a lame party, right?

My'isha's 1st & Tre's 3rd brithday at Chuck E Cheese in their handmade birthday shirts.
My’isha’s 1st & Tre’s 3rd birthday at Chuck E Cheese in their handmade birthday shirts.

Here is the shirt I made for Stevie Tre’s birthday. I had so much fun! I met him choose the patch that he wanted and the style of number, and I did the rest with some help from my cousin Stephen Burke.

243143_10151070729622073_1520222223_oHe loved the shirt and wore it many times after his birthday.

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Here is the onesie I made for My’isha’s 1st birthday.

This is the first onesie I made for My'isha.
This is the first onesie I made for My’isha.

At this point, she had not been diagnosed with cancer, but we had recently found out about her 6q25.3 microdeletion.

She was already so much of a princess, turning warrior, by her 1st birthday.

The front of My'isha's 1st birthday onesie.
The front of My’isha’s 1st birthday onesie.
The Princess Warrior's 2nd birthday and BMT bithday onesie.
The Princess Warrior’s 2nd birthday and BMT birthday onesie.
My'isha's B.M.T bithday was on her actual 2nd birthday.
My’isha’s B.M.T bithday was on her actual 2nd birthday.

By the time her 2nd birthday came around, she well into chemotherapy, and she received her stem cells from her stem cells transplant on her 2nd birthday. I HAD to make a onesie for that day!

I have made a couple of shirts for myself and friends for fundraisers and to send to folks who were able to donate a certain amount to My’isha’s B.M.T. Birthday.

I still have 2 of the shirts I made, one hangs above her bed, and the other is tucked away for safe-keeping.

Fundraiser tee worn at our first fundraising event.
Fundraiser tee worn at our first fundraising event.

My’isha and I had earned a reputation from a local radio station, called 1Blunt Radio, of Colorado Fans. They invited us out to a tail gate party where they were to dedicate their newly released, Colorado Fan, song to My’isha. Here are a couple of onesies I made for that season.

My'isha's Bronco sleeveless onesie
My’isha’s Bronco sleeveless onesie

That was the year we went to the Super Bowl too. Go BRONCOS!

My'isha's longsleeve Broncos onesie.
My’isha’s longsleeve Broncos onesie.

The actual shirts themselves are the most expensive part. I am willing to personalize gear the you already have or find something new. Also check out our handmade jewelery made by My’isha’s oldest brother Alijah.

Small items Alijah, Xavier, and I made for My'isha's fundraiser.
Small items Alijah, Xavier, and I made for My’isha’s fundraiser.

All funds that are put into paypal.me/miracles4myisha will go towards obtaining materials to deliver to children who are inpatient during an event or occasion. I am looking to have a nice size delivery for the Children’s Hospital of Colorado by Christmas time. For more information please do not hesitate to email Miracles4Myisha@gmail.com or reach out to us via Facebook as well.

Creations 4 Miracles 4 My’isha — September 10, 2015

Creations 4 Miracles 4 My’isha

/Mommy (Aisha)/3 Comments

If you have been following us on Facebook, then you already know about our arts and crafts. If you are new to our story, please read on.

My’isha was a very special baby all the way back to when she was in my tummy. She is missing a piece of her 6th chromosome which makes her a special princess. She has also beat cancer, while she was learning to walk and communicate. That pretty much makes her a Princess Warrior.

I, am just her mommy. I do my best to support the amazingness this young lady brings into this world. When we entered the world of cancer treatment, I found myself researching and doing everything to keep My’isha happy and comfortable while not neglecting my 3 boys.

There came a point when my busy-body kicked in, and I had to do SOMETHING. I wasn’t leaving My’isha at the hospital for any amount if time, so trying to keep my mind occupied led to an awakening of my creativity.

So, Creations 4 Miracles 4 My’isha is a Facebook page for me to show off the creations I or My’isha’s brother’s, Alijah and Xavier, have made either while My’isha was going through her treatment, or afterwards trying to make money for my family.

I had to have something to do, all those lonely nights in the hospital. So, I rediscovered arts and crafts. It was probably one of the best things to happen to me over the past few years. I love to create things for people.

Here are some photos of the items I have left. I am putting them up for donations on Creations 4 Miracles 4 My’isha. All you need to do is comment on the photo of the item you want, the amount that you are willing to donate for them item. Then, you go to paypal.com/miracels4myisha and make your donations. Once your donation is received, we will send you the gift you posted on.

Funds from this fundraiser will go towards My’isha’s birthday party. Her birthday is a week before her brother Xavier, so it makes it a little tough to all of the things we want to do for them. All contributions will go straight to making sure they both get the birthday celebrations they deserve.

It is a little ironic that #ChildhoodCancer #Awareness month falls on My’isha’s birthday month. She will be 4 years old this month, and this is her last year of preschool before she moves on to Kindergarten. I am so excited for her!

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These are a few key chains handmade by myself and My’isha’s brothers.
Handmade hemp necklace with black and silver charm
Handmade hemp necklace with black and silver charm
Represent the Denver Broncos with this set of a necklace and bracelet, or choose the bracelet alone for a brighter blue and orange.
Represent Colorado and our Broncos with this set of a necklace and bracelet, or choose the bracelet alone for a brighter blue and orange.

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This handmade choker has very cute purple accents. Perfect for wearing with anything.
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Show your Colorado pride with this handmade necklace. 
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This necklace has a retro feel to , with a Colorado Style Peace sign charm and glow in the dark beads and thread. Perfect for a room accent AND fashion accessory.
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Handmade charm and necklace. This collaboration is all handmade in Colorado. Show your Colorado pride in a way that makes a difference.
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