Miracles 4 My'isha

#SmileThroughItAll

Here we go again. — January 23, 2016

Here we go again.

It all started when I noticed her pants getting a little loose. The complete opposite of what should be happening to my daughter at 4 years old. When I took her in to see her doctor, it was confirmed that she had not gained weight in close to 6 months.

My’isha’s primary care physician (PCP) requested blood work and urine analysis (UA). We waited for results, and the results looked reassuring. With routine scans coming up right around the corner, there wasn’t too much more we could do.

Before scan time came, My’isha fell and came to me with a very swollen arm. I knew it was broken. When a little girl breaks her arm, you would expect there to be a lot of pain, which there wasn’t. Which is probably why they sent us for outpatient x-rays and were just going to get a call to let us know if it was broken or not. I knew the bone was broken and needed to be stabilized before I could let her go to sleep, so I made the phone calls to find out the results. It wasn’t until I was on the way to the Emergency Room with her that I received a call with the x-ray results. Her radius had what looked like a small break. The ER stabilized her arm with a brace and referred us to a sports medicine orthopedic surgeon.

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My’isha with her broken arm ready to take on neuroblastoma again!

How convenient was it that Memorial Hospital’s system was down and the orthopedic dr had no access to my daughter’s x-ray? It may or may not have made a difference, but he took my word for it. I told him that her doctor’s office confirmed it was broken which was enough for him to cast her up for 3 weeks.

A week later, My’isha went in for her routine scans. I knew something wasn’t right when a very unfamiliar feeling came over my body while they were doing her CT scan. As many times as my daughter has been back for similar procedures, I have never had such a strong feeling come over my body. I had no reason to cry and be worried, but I was.

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My’isha is always smiling! Even waiting to go back for CT Scan.
So when we went upstairs to talk with her Dr about the results, I was nervous and uneasy. The whole visit just didnt go as normal. Usually he comes in with the CT results right when he comes and tells me so I am not worried. This time, he had some of the labs, but didn’t have the CT scans. We talked as normal and the exam went as normal. When he went to go get the scan results, he came back and said they were clear with the exception of a swollen lymph node under her arm. I was relieved at that point, but he wanted me to feel the lymph node so that when we went to go see her PCP to follow up, I would know how big it was.

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Back home after scans and feeling fine.
Within 2 days, I noticed it was a little larger, so I went ahead and made the follow-up appointment with her PCP. It was 3 days later when we went to see her PCP, the lymph node was even larger. Her PCP showed concern and wanted it out in a week, but of course, it was 3 days before we saw the pediatric surgeon and another 5 days before the procedure.

When I noticed the lymph node was growing so quickly, I pretty much knew that her cancer had returned. It was the only thing that made sense to me. Normal cells just don’t grow that quickly. THAT was when my worry began to set in. I started looking into what CBD products I should be giving her and proper dosing. <<<That is another post on my A New Kind Of Mommy Blog because that was a battle in itself.

We went in for the surgery and all went as planned, no big rush of worry like before, likely because I already knew. Anesthesia and surgery went fine. They were able to remove the lymph node completely and My’isha recovered nicely. The surgeon said that it looked like nothing more than an infected lymph. I knew he was mistaking, but I let it make me feel a little better.

We went in to get her cast removed 2 days after her surgery. They orthopedic surgeon looked at the cast and said it looked loose enough to pull off and avoid using the saw and stuff, so he did.

The skin under the cast looked great, but the sight of the break didn’t look much better to me. It was still swollen and looked a little deformed. He assured my mom and I that no x-rays would be needed because we know that it is healed and the swelling will go down.

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My’isha’s arm after cast removal. Her radius is being destroyed from the inside out by neuroblastoma.
I didn’t feel good about his answer, but he wasn’t going to do anything, so we left, and I called her PCP office for a follow up appointment for her arm.

The dr that saw My’isha’s arm showed some concern and wanted the arm x-rayed. Of course, while we were there I asked about the bipsy results, but they weren’t in yet. So we left to go right down the street for x-rays.

My’isha’s dr office called me as we were walking into the hospital for he x-ray and said the dr wants us to come back after the x-ray. I knew I was in for some news, but I was kidn of hoping that is was just to go over the x-rays. Part of me was really hoping that they were just being proactive and were thinking it would need a splint. Another part of me knew we were going back for biopsy results.

After her x-rays we went back to her dr office. They got us back right away, but we sat in the room for quite awhile. I figured they may be just waiting for the x-ray to come back.

When her PCP walked in and not the dr we saw earlier in the day for her arm, I knew. I knew we were going to get biopsy results.

Biopsy result: metastatic neuroblastoma… the cancer is back. The disease has affected her radius and there are lesions all through the bone. The bone needs to be supported. We need to do a full work-up to find out if there is another source of disease or if the lymph node was the tumor site.

The neuroblastoma that we went through a year and a half of treatment to get rid of is back. So here we go again.

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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

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

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

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

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!
March 27th 2013- Day one of chemotherapy for my one and only daughter — September 1, 2015

March 27th 2013- Day one of chemotherapy for my one and only daughter

Day one of treatment:

Today is My’isha’s first day of chemotherapy. I have been waiting for this day some I received that call. The call when the doctor said there was a mass in My’isha’s belly and it may be cancer. These past few weeks have been a roller coaster of emotions. Today, I woke up unrested and extremely anxious, butterflies, panicky, shaky, the whole 9… I was told yesterday my beautiful baby girl has high risk stage 4 Neuroblastoma. I wasn’t able to hold a regular conversation the rest of the evening. No matter how well Dr. Meyer prepared us, no matter how much research I did, I wasn’t ready for today. Just like I was expecting, stage 4, but after he said it, and explained the treatment plan, I wasn’t ready for the flood of emotions that rose so quickly I almost dint have enough time to get out the room before tears filmed my eyes. This morning I needed to reach out. I needed to know what to expect from a mother’s perspective. I couldn’t call me mom or dad as I normally do for support. No, that’s not he support I needed this morning. I needed the support of another mom whose baby has been through this. I text a mom from 10-Strong. 10-Strong is a group of moms who have formed a bond on this 10th floor of OU Children’s oncology floor. She told me she would come visit with me today and she did. She was one of the best things that happened to me today. She validated the emotions and thoughts I have had over the past few weeks. She helped me feel normal again. I keep getting reminded through other moms and resources that I’m not the only mom going through all of this and I’m definitely not the first. Other moms before me have set up the programs and groups I need so I can focus on getting My’isha better. I have to be strong for her. I have to get used to the cancer lifestyle for a while. It is our strength that is going to get My’isha better…

March 27th, 2013 on the 10th floor of OU Children’s Hospital

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