I want you to know that I wanted to have a baby girl so very much. I am so proud to be your mommy. I am so proud of all you have learned and all of the odds you have had to over come.
I have to apologize for a few things. I apologize for all of the times I have held you down. I am sorry for all of the times I let them poke you. I have let them cut you open on more than one occasion for a number of a reasons and for that… I am sorry. I apologize for the many nights we have had to stay away from home and the future nights we will miss in our own beds. I also have to apologize for every side effect as a result of the treatments I signed off on.
I have to tell you something else. There is nothing in this world I would not give to take your place. to take every surgery and drug and poke and sedation and test and cancer. I would gladly take it all from you. Everything that I have done… that I have tried to do… that I will try to do… is all to give you a happy healthy life. However, I am not sure if I am being selfish in putting you through any of this nonsense to keep you with me.
I want to play make up with you for as long as you will let me. I want to carry you as long as you will let me. I want to cuddle with you more often and for as long as you will let. I want to watch you grow-up. I want to help you with your homework. I want to teach you so much more and I want you to see so much more than we could possibly have time for. I want to hold you when you cry until I die. I want to hear you talk to me everytime your mad. I want to watch you play in the sand and play in the water and play on the play ground and run with me and climb with me….
I am writing you this letter to let you know that I am sorry for everything that has happened and for everything that will happen. I am writing you this letter to tell you I love you and I want you to be happy and healthy for as long as possible. Cheers to kicking cancer’s ass one more time ❤
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….
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.
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.
Stay tuned for the next post where I talk more about the MIBG therapy and scan day and discharge 😉 Thank you for reading 🙂
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!
Here we go again. It has been 6 months since My’isha’s last routine CT scans. This time, we are a little more nervous.
You see, back in 2012, we were in the ER for a cold. Upon doing the chest x-ray, the doctors notice a blood clot of hemorrhage on My’isha’s left adrenal gland. The physicians didn’t think much of it and said we will follow-up in 6 months unless anything changes. Before the 6 months was up, we noticed My’isha’s weight had leveled off, which led to further testing and eventually the ultrasound that revealed the tumor in my babies abdomen.
So when we hear that her weight has leveled off yet again… well… we are a little nervous to say the least.
All it takes is one growth to land my daughter back in the fight for her life. A fight that is lost by 0ver 5 children daily. Almost 2,000 children will die of cancer this year. The truth is, My’isha could be one of them. It is a tough pill to swallow, yet it is the reason we live each day truly blessed to have her in our lives. She just keeps smiling and making the world a little brighter each day.
I found this free dresser for My’isha the other day 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.
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.
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.
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?
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?
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.
He loved the shirt and wore it many times after his birthday.
Here is the onesie I made for My’isha’s 1st birthday.
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.
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.
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.
That was the year we went to the Super Bowl too. Go BRONCOS!
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.
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.
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!
How long does a mommy wait to put her baby girl’s hair into pony tails?
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.
After her first cycle chemotherapy, things began to change. I 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.
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.
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…
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.
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.
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.
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.
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!
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
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!