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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Feb Scans: No Change… What Does A Mommy Do Now? — February 20, 2017

Feb Scans: No Change… What Does A Mommy Do Now?

Yet again… I am faced with the decision to disrupt our life and subject our princess to daily sedation for 5 days for 1-4 weeks in Denver. Her wrist still lights up hot, so the decision remains until the cancer is GONE… 100%. She is so happy.. she seems to be doing so well… I really am not in a rush to change our lives at this point to be quite honest. She loves going to school. She made it through a full week of school last week! Everyone is so happy to see her. To make it through this school year would do wonders for her mind and soul, as well as everyone in the classroom.

Quality of life for her brothers is important to me as well. I will have to make arrangements for 2 of my boys whether we stay or commute daily. We are talking about changing everyone’s lives even if just for a week. If we take anything less than 4 weeks, the intensity of radiation My’isha receives increases, in order to still be effective… another tough decision that will need to be made when the day comes.

I have to do a little more research on the effects of frequent sedations as well. I am concerned about sedating her daily for any extended period of time… especially after what happened during MIBG Therapy Feb 2016. It is scary to watch your baby’s vitals drop and not respond to her daddy’s yell. Especially when she is in a radioactive room with a THICK wall between us and a strict scrub-in/out routine. At some point someone has to say, “To hell with protocol I am saving this child!”… usually a parent first by the way. It is an intense and terrifying situation, and something a parent will never forget.

The issue with keeping My’isha on the routine, is the expense and struggle to get quality meds. A 3-day dose for My’isha runs around $50 at the local dispensary. Our city and state is “cracking-down” on patient home-grows and gifting laws this year which will SEVERLY impact poor patients and parents of patients such as myself. We depend on the ability to find growers and caregivers willing to GIVE AWAY meds and they rely on the community to be able to pitch in as they can and when needed. Unfortunately, that is a battle that will need to be won at the state level and then again at the city level. This is why I do what I do every day. Patients who cannot afford healthcare, and insurance, need a better way to heal and treat.

Radiation itself is the lowest risk treatment offered that will kill the cancer cells by mainstream treatments. I have to weight the pros and cons of each and compare…. anyone want to trade places yet? For a week? Its alright… I will get my break eventually…. hopefully it is a vacay while the kids are on vacay somewhere else… happy.. and healthy….

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

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

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

 

Chemo: pre-meds a cancer mom’s view — May 22, 2016

Chemo: pre-meds a cancer mom’s view

I have been away from the blogging scene for a little while. Life became a bit overwhelming when we found out the MIBG did not clear all of the cancer from My’isha’s lymph node.

That being said, we have finished 2 out of the 6 cycles of chemotherapy My’isha will be going through. She is getting Irinotecan and Temodar for these 6 cycles, and so far she is tolerating them both extremely well.

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Last day of cycle 2 and handling chemo like a champ.
I have some confessions to make. We started My’isha on CBD oils just before her MIBG therapy. We had to stop due to her being on a medical study, and we were cleared to restart after she had the final scans from the MIBG study. So we continued with the CBD through her first week of chemo. We have not restarted the CBD yet, but will be soon.

My’isha acts totally normal. You would never know that she has to take an oral chemo for a week and an IV chemo for 2 weeks. She has not changed since before starting the chemo. She has no nausea, no diarrhea, NOTHING! Even the doctors say she is doing amazing.

Everyday we have to go to the clinic, they offer to give her Zofran. I respectfully decline every time. The weeks that she has to take the oral medicine, I give her a dose of Zofran in the morning, in hopes it will help keep the nasty stuff down. Other than the 1 dose a day for a week every 3 weeks, there really is no need.

She was prescribed an antibiotic to help with diarrhea the crazy blow-out diarrhea the chemo is supposed to give her. I have given it to her maybe once, and her stools have not changed from her normal.

All children who take chemo have to take a medicine called Bactrim or Septra. It helps keep away a bacterial pneumonia chemo patients are more susceptible to. I had given her this medicine ever since she started treatment this time and I religiously gave it to her during her first bout with cancer. Funny thing is, she had a runny nose that I always blamed on the chemo. The doctors told me chemo could cause her to have a runny nose, so I really thought it was the chemo. I stopped giving her the Bactrim, mostly because I forgot(it is only a Saturday Sunday medicine). She has not been ill with even a cold since the last time I gave it to her.

Her oncologist also recommended that I continue giving My’isha an inhaled steroid since she has such over-active airways causing a simple cold to turn into wheezing and breathing treatments. I stopped doing that as well because she has been doing so well, I have a hard time giving medicine when she is fine.

So, I really am not sure what all of this means. It just keeps ringing in my ears that the medical industry is not in the business of healing, they are in the business of making customers. Do they give these medicines out of habit? Is there some benefit to them or the hospital for prescribing medications we do not need?

We should be on a LIST of medications going through this treatment based on the medicines they want me to give my daughter. By not giving her these medications, am I putting her at risk? Or am I putting her at greater risk when I give her medicine that she does not need.

The chemo has a purpose… the kill the hiding cancer cells. Putting more medicine in her body “just in case” sounds more harmful than good. I have all of the medicine and inhalers on hand in case things take a turn for the worse, but for now… they will sit in the cabinet with the Tylenol until needed.

 

MIBG Is Done, And We Wait. — March 17, 2016

MIBG Is Done, And We Wait.

Man, it has been a busy couple of weeks. Let’s see, last time I posted on her blog, we were still inpatient. We had endured our first night in the hospital.

My’isha did extremely well with the MIBG infusion. She had pretty much no side effects outside of the radiation she had beaming out of her and in being released in her bodily fluids.

The chemotherapy drug Vorinistat messed with her appetite and taste buds quit a bit and gave her an upset stomach. So we had vomiting issues with medications.

It was Friday night when things got really REAL.

My’isha went to fall asleep, and all of a sudden her oxygen levels dropped! Normally when you hear that beeping the hospital, its nothing. With her, she either pulled the pulse/ox off or is playing with her feet or something. This time, as I was walking out to get gowned up to check on her, other nurses were on their way to come in.

We opened the big lead door between our room and her radioactive room. I yelled her name… nothing. Her daddy yelled her name… nothing. At this point, I am getting ready nurses are getting ready to get in the room. Her daddy is yelling her name…. nothing. I rushed in the room and sat her up and rubbed her back and she stirred. She opened her eyes upset that we had woke her up.

She wanted to lay back down. I let her lay down, all eyes on her and the monitors….. and she de-stated again. Again, difficult to wake her. At this point, I am in life saving mode, emotions off, just logical thinking switch on. Daddy is doing the daddy thing for us for now.

So what is going on, right?

We also had to rule out the risk of seizures. Due to My’isha’s rare genetic situation, she is at a higher risk of developing seizures and the treatment can cause seizures. We were able to rule that out rather quickly.

If you read the last post, I talked about the sedation cocktail we had My’isha on to keep her from pulling her tubes and to keep her pretty still in her crib. We needed her to be pretty chill through this time until her radiation levels were low enough to remove some of the montiors and tubes. She was on a drip of Ketamine, and around the clock Benadryl and atarax. So, it could have been either one of those or the combination of the 3 over aperiod or 3-4 days that was putting My’isha into a deep enough sleep to slow her breathing to almost stopping and making her difficult to arouse.

Talk about scary.

Once we stopped the sedation meds, the real mommy daddy work began. She had been pretty sleep for 4 days, so now… at 2am-6am she was wide awake. She was playing and pulling on tubes. She was back to normal My’isha. Which was a problem for her safety because she could pull a tube connected to a central line or the catheter in her ureter. Which meant more work for mommy and daddy… and nurses and doctors.

It was always awesome to see the doctor storm in our room saying, “DON’T PULL ON THAT MY’ISHA!” to the TV. It was GREAT! Especially when My’isha was only just trying to get a pretzel from the bottom of the bed she had picked up with her feet.

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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?

We were lucky that the dose of MIBG she received was so low. It left her body fairly quickly and her radiation levels were low enough to where she posed minimal risk to us. So, with the sedation meds turned off and My’isha wide awake at 2am, our shifts began. Daddy took the first shift and I tried to get some rest in case there was another emergency. Which there was… she threw up. Let me just say this, weak-stomach daddy’s have no place in the vomit world! Although by the end of the following day, he was cleaning vomit like a champ!

It was around 6am when he was finally able to get her to sleep and lay down.

Meds were due at 8am, which meant it was my turn. He had to go back to work on Monday, on top all of the weekend’s excitement, so the nurses and I tried to let him get as much sleep as possible. However, with the paper towel dispenser going off everytime someone came in or out, and the radiation meter beeping like crazy when someone came  in or out, the big heavy door moving every couple of hours or more, and My’isha’s monitors going off if she moved her toes the wrong way…. it was still difficult to get any sleep.

Her radiation levels were low enough the following day to remove the catheter. So that was a relief.

She slept through the night and took a nap maintaining her oxygen levels, so we were able to remove some of the monitors too.

It seemed we were on the upswing. The only things keeping us inpatient had been removed.

Monday was scan day and release day.

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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.

Stay tuned for the next post where I talk more about the MIBG therapy and scan day and discharge 😉 Thank you for reading 🙂

 

 

What will MIBG be like for My’isha? — February 26, 2016

What will MIBG be like for My’isha?

We had no idea. Not even the medical team knew what to expect. The MIBG treatment has been at the Children’s hospital Colorado for about a year and a half, so it is still fairly new. My’isha is the first child under the age of 10 to have this therapy done here. So knowing that she will need to be in a room, alone, with tubes and lines hanging everywhere, we planned for some sort of way to keep My’isha calm and preoccupied. However, being that she has sensitive airways and just getting over a cold, AND… she has an adverse reaction to versed, we knew we were going to have our hands full, and really have to try to think outside the box.

So, day 1 (yesterday) started of with line placements and such. We decided to give a dose of Ativan to see how she tolerates it since it is in the same family as Versed. The ONLY reason I even agreed to give it a shot, is because she was going under general anesthesia afterwards anyway. So, if she had a paradoxal reaction, they would just quickly sedate her. It seemed to me that the Ativan worked like it was supposed to. She was chill and very easily took the mask and went off to sleep.

I had to drive back home to try to make it to my A&P class, so I missed her coming out of the procedure. However, when I made it back, the story was that she was not handling the Ativan well at all. She pulled the NG tube out soon after she made it up to her room. She was upset and irritated. They stopped the Ativan, but she continued to be restless and hard to calm and fussy until almost 2am this morning.

So today, we decided to try something else. She is on a Ketamine drip plus Benadryl and Atarax. It seemed to be working pretty well, so we went ahead with the infusion of her MIBG. The infusion went well. There were a lot of people in and out of the room doing preparation and infusions and monitoring. She was very mobile and entertaining for the staff and I.

The nurses said the older kids just kind of lay there, while My’isha threw her noodles, dumped her pretzels, got twisted in her lines, had the doctor coming in to press play on her tablet, she called one of the nurses La-La which is what she calls my sister (in My’isha’s defense, she does kind of look like my sister), and hit the doctor with her empty chee-tos bag. The doctor said My’My  was so fun to watch, that she is calling the monitor they watch her on “My TV.” I love that the staff calls her My’My. I have met very few people that I do not like at this hospital, and most of them take pride in doing things the right way… my kind of people.

Anyways, so about halfway through the infusion, we had to get a little more protective. I now have to get 2 layers of gloves, 2 layers of booties, and a gown on to go in the room with My’isha. I can touch her to clean her or feed her, but I can’t hold her to comfort her. I have to watch her via a monitor and microphone that connects our rooms. There is a big lead door between her and I to protect me from the radiation she is releasing.

I have to wear protective gear to protect myself from my daughter.

Let me say it again. My daughter is so radioactive, that I have to take special precautions and put on special gear to be able to go into the same room as her.

She isn’t even the most radioactive child they have had to treat either. We are lucky, because she is so small, and the dose is so low, that the radiation levels start off low. Anytime I want to think about how hard this is for me, I am very quickly reminded of how fortunate we are.

So she has been resting since the infusion. I have been in 3 times at least, but only once to give medications and such. I will have to gown up and go in every 4 hours for medication and such until her radiation is at a safe enough level, which at that point, we should be close to getting home.

As you know, if you read our blogs, the waiting game is a cancer mom’s job duty, and the one that takes the most time and often times the most energy. So, all we do now, is wait. The infusion lasted about 90 minutes, followed by twice an hour radiation level checks, medications, and a whole lot of waiting. We have to wait for her radiation levels to be low enough for her to be home and around people without exposing people to radiation everywhere she goes.

Until then… we wait and watch. I do my best to keep her calm and happy.

 

 

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

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

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

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

Creations 4 Miracles, gifts for childhood cancer warriors

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.

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!

This was the beginning of My’isha versus Neuroblastoma — September 3, 2015

This was the beginning of My’isha versus Neuroblastoma

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

This was the first post I made on Facebook after receiving “the phone call”:

My’isha Dawn Amira Chavers
The sweetest most affectionate most cuddly precious little princess. PLEASE PRAY FOR HER. She has overcome so much in these short 17 months. She has already been diagnosed with a microdeletion of her 6th chromosome causing her developmental delay. She is ahead of the game when compared to other kids with this condition. She’s pulling herself up and cruising and waving and pointing and giving kisses and high fives. She is showing so much progress…and then this: She had what they thought was a blood clot that would dissolve. Instead, over the past 6 months it has been growing. The Dr. Called and said it’s either a tumor or cancer and it requires further testing. She’s already having at least 1 appt per week for her therapy plus checkups and testing. My baby girl…. My beautiful baby girl… Pray long and hard for this beautiful baby. If u know her and have met her your lucky and you can feel a piece of my pain. If you haven’t met her… When you do she will make your darkest night the brightest day with one smile and if you hold her the world will stand still for a few moments. She will take your heart away! Share her story and raise awareness of her personal triumphs. I hope that so many people pray for her that the lord gets tired of it and just heals her. I know that’s not how it works but a mommy has to hope for the best. I will keep you all posted. Thank you heart emoticon

'My'isha Dawn Amira Chavers The sweetest most affectionate most cuddly precious little princess. PLEASE PRAY FOR HER. She has overcome so much in these short 17mts. She has already been diagnosed with a microdeletion of her 6th chromosome causing her developmental delay. She is ahead of the game when compared to other kids with this condition. She's pulling herself up and cruising and waving and pointing and giving kisses and high fives. She is showing so much progress...and then this: She had what they thought was a blood clot that would dissolve. Instead, over the past 6 months it has been growing. The Dr. Called and said it's either a tumor or cancer and it requires further testing. She's already having at least 1 appt per week for her therapy plus checkups and testing. My baby girl.... My beautiful baby girl... Pray long and hard for this beautiful baby. If u know her and have met her your lucky and you can feel a piece of my pain. If you haven't met her... When you do she will make your darkest night the brightest day with one smile and if you hold her the world will stand still for a few moments. She will take your heart away! Share her story and raise awareness of her personal triumphs. I hope that so many people pray for her that the lord gets tired of it and just heals her. I know that's not how it works but a mommy has to hope for the best. I will keep you all posted. Thank you <3'
'My'isha Dawn Amira Chavers The sweetest most affectionate most cuddly precious little princess. PLEASE PRAY FOR HER. She has overcome so much in these short 17mts. She has already been diagnosed with a microdeletion of her 6th chromosome causing her developmental delay. She is ahead of the game when compared to other kids with this condition. She's pulling herself up and cruising and waving and pointing and giving kisses and high fives. She is showing so much progress...and then this: She had what they thought was a blood clot that would dissolve. Instead, over the past 6 months it has been growing. The Dr. Called and said it's either a tumor or cancer and it requires further testing. She's already having at least 1 appt per week for her therapy plus checkups and testing. My baby girl.... My beautiful baby girl... Pray long and hard for this beautiful baby. If u know her and have met her your lucky and you can feel a piece of my pain. If you haven't met her... When you do she will make your darkest night the brightest day with one smile and if you hold her the world will stand still for a few moments. She will take your heart away! Share her story and raise awareness of her personal triumphs. I hope that so many people pray for her that the lord gets tired of it and just heals her. I know that's not how it works but a mommy has to hope for the best. I will keep you all posted. Thank you <3'
'My'isha Dawn Amira Chavers The sweetest most affectionate most cuddly precious little princess. PLEASE PRAY FOR HER. She has overcome so much in these short 17mts. She has already been diagnosed with a microdeletion of her 6th chromosome causing her developmental delay. She is ahead of the game when compared to other kids with this condition. She's pulling herself up and cruising and waving and pointing and giving kisses and high fives. She is showing so much progress...and then this: She had what they thought was a blood clot that would dissolve. Instead, over the past 6 months it has been growing. The Dr. Called and said it's either a tumor or cancer and it requires further testing. She's already having at least 1 appt per week for her therapy plus checkups and testing. My baby girl.... My beautiful baby girl... Pray long and hard for this beautiful baby. If u know her and have met her your lucky and you can feel a piece of my pain. If you haven't met her... When you do she will make your darkest night the brightest day with one smile and if you hold her the world will stand still for a few moments. She will take your heart away! Share her story and raise awareness of her personal triumphs. I hope that so many people pray for her that the lord gets tired of it and just heals her. I know that's not how it works but a mommy has to hope for the best. I will keep you all posted. Thank you <3'
'My'isha Dawn Amira Chavers The sweetest most affectionate most cuddly precious little princess. PLEASE PRAY FOR HER. She has overcome so much in these short 17mts. She has already been diagnosed with a microdeletion of her 6th chromosome causing her developmental delay. She is ahead of the game when compared to other kids with this condition. She's pulling herself up and cruising and waving and pointing and giving kisses and high fives. She is showing so much progress...and then this: She had what they thought was a blood clot that would dissolve. Instead, over the past 6 months it has been growing. The Dr. Called and said it's either a tumor or cancer and it requires further testing. She's already having at least 1 appt per week for her therapy plus checkups and testing. My baby girl.... My beautiful baby girl... Pray long and hard for this beautiful baby. If u know her and have met her your lucky and you can feel a piece of my pain. If you haven't met her... When you do she will make your darkest night the brightest day with one smile and if you hold her the world will stand still for a few moments. She will take your heart away! Share her story and raise awareness of her personal triumphs. I hope that so many people pray for her that the lord gets tired of it and just heals her. I know that's not how it works but a mommy has to hope for the best. I will keep you all posted. Thank you <3'
Looking back and reading this post along with many others before this, I have to admit that I knew something was going on. I am sure many mom’s feel the same way. I had so many emotions going on at the moment. I just wanted to know as much as I could possibly know about what they were talking about, but as most of us know, and a lot less of us understand, it takes a while to take care of testing and results and treatment road maps and everything else they need to do before giving you answers. I spent the majority of the next 2 years waiting. Waiting for results, waiting for doctors or meds, waiting for the end… whatever that may be. It is terrifying to hear the words tumor or cancer. It is terrifying to watch your baby vomit beyond control and not be able to tell if they are in pain or they just simply don’t feel well. It is terrifying to think about having do to a funeral for the child you gave birth to. I did my best to prepare myself for the worst, but hope for the best, and we always tried to smile through it all!
Every parent was chosen for this battle just as their child was. Our battle is over… in a good way. Today, 7 children will lose their battle and gain their angel wings. Today, 14 parents will lose their child to cancer. Yet, of the total funding for cancer, pediatric cancers only receive 4%! It really makes no sense considering the amount of adult onset cancers that are due to lifestyle. When it comes to donating, it is hard to tell which group to support. I encourage you to do your research before sending your money to fund pediatric cancer research. Find out where the money is going.
A lot of people told me they didn’t know what to say to me when I said my daughter was diagnosed with high risk stage 4 neuroblastoma. I am not sure I would have known what to say. I would just say, “I am here for you,” and then REALLY be there for them. We always need help with meal preparation, clothes, fundraising, and mommy time is ALWAYS needed and not always taken. Not all of you reading this blog will be cancer mommies, some of you will be grandma’s, or sister’s, or aunts, or friends, please know, that cancer affects all of us. No one likes to see children suffer for no reason. Please, find a family and see what you can do to help. Just because the battle if over, doesn’t mean the dust settled.
To help Miracles 4 My’isha get ready for her 4th birthday at the end of this month, we have opened her fundraiser account on paypal again at paypal.me/miracles4myisha. If you would like to send cards or decorations or anything of the sort, please contact us on our facebook page http://www.facebook.com/miracles4myisha.
Thank you for reading and as always, thank you for your support!
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