Miracles 4 My'isha

#SmileThroughItAll

metastasized neuroblastoma to the lymph system: Our experience — October 7, 2017

metastasized neuroblastoma to the lymph system: Our experience

We discovered neuroblastoma in My’isha’s lymphatic system after she “broke” her arm in Dec of 2015.

The ACTUAL situation, was that neuroblastoma had come back for My’isha for the 2nd time and it had attacked her radius in her arm. The weakened bone fractured when she fell off a chair  bought her for Christmas. Neuroblastoma was not a thought until her corresponding axial lymph nodes began to swell.
Biopsy confirmed the neuroblastoma had returned so we went along with tradtitional treatments including the “NEW” and “Promising” MIBG therapy as well as 6 more cycles of chemotherapy in addition to the 6 she has received during initial treatment.

Fast forward past another relapse, more chemo, and more radiation….

After 2 cycles of chemotherapy, My’isha’s bone marrow was slow to recover leading us to try another path of therapy.

After 11 days of targeted radiation, the disease was progressing in the the radiation areas as well are surrounding areas, so per radiation oncologist it was determined that her disease is radiation resistant.

NOTE: At this time, we still have the option to pursue further chemotherapy and antibody therapy combined which has a 50% response rate (either controlled or minimized)

Our family has watched My’isha turn from a happy, loving, independent, and ambitious princess warrior to a babygirl fighting pain every day and with disease trying to explode from her lymph nodes over the past month.

It has taken me a long time to share these photos because I feel they are a sign of failure on so may levels as well as because I am friends with so may empaths that I know you will feel the pain as well.

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Note the swelling near the neck and under her arm.

 

As a mother… what WOULDN’T you do? Our list of lymph cleansers and detox and supplements is probably not as long as it could be…. or too long depending on who you ask. However a week after the photos above were taken… I took these:

Her disease is not slowing… even with everything I am throwing at it. Her bad days are out numbering the good. I am re-evaluating some of the items we are running out of and deciding what to keep on the regimen and what can go. In terms of diet… we met with the dietician today and they have nothing new to offer. We met with the oncologists and they also have nothing new to offer. We are constantly seeking more therapies and more knowledge. I am tired of having end of life discussions… especially as I watch new lumps appear on her body as well as new and increasing pain. I am tired… we are all tired… keeping he in good spirits is becoming harder and harder with each day, but this cannot be the way things end. This is not the end.. we are fighting and grateful for every smile and every walk and every game and EVERYDAY.

When you are a mother with a child newly diagnosed, you trust everything the doctors say.

Then the disease comes back, you begin to question not only the doctors, but your own decisions.

When the disease comes back AGAIN… for the 3rd time… you not only lose trust in the doctors all together, but you begin to question everything you do and have done for the extent of your child’s life.

If nothing else comes from this battle… I want cancer mommies to feel empowered to seek knowledge, questions the physicians and push for the least evasive treatments available to help their child not only survive a battle… or 2… or 3… with cancer… but to also cause the least amount of damage to a child’s body.

I know that my daughter’s disease is smarter than most of the treatments these medical physicians have come up with in their labs. I understand how cancer works. I am mad that physicians are forced to turn the head to dietary remedies and natural remedies…. especially when we are talking about CHILDREN.

I am a frustrated mother… not only with physicians and the medical industry, but also with our law makers. No child should have to suffer due to silly little laws and NO ONE FIGHTS ALONE! Expect that when a child is involved there will be a village at your door expecting answers and action.

 

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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!

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

Neuroblastoma has returned, but to what extent?

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!

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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