Miracles 4 My'isha

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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!

A Letter to My Daughter — August 3, 2017

A Letter to My Daughter

Dear Baby Girl…. My Life… My Daughter,

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 ❤

Love, your mommy… your caregiver… your teacher

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

 

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 🙂

 

 

First fever with her new port — February 13, 2016

First fever with her new port

In my last post, My’isha had just got her port replaced and we had made it home.

We were all really tired. We just wanted to go to bed and start the next day. The only reason I checked her temperature is because my mom called and asked if she had a fever. Mother’s intuition doesn’t stop when your child has children. Sometimes she picks up on things I don’t, like this fever.

It quickly climbed to the magic 101, so I called the number from her discharge papers for the surgeon. Wouldn’t you know, it was a non-working number. So I had to call the oncology department nurses line. I knew that with a central line, we run the risk of an infection in the blood or in the line, so we would need to go the emergency room. I began packing our bags before the doctor even called us back. Not a problem right, just head back up to Denver around 9pm.

We were quickly taken back to a room, and we must have been SUPER lucky, because we had 2 nurses. They come in running…. grabbing the stuff for cultures and accessing her port. Of course they asked me for the size of needle for the port that she just got and I left the packet they gave me at home. So I really had no idea. I called home and had Mikey look through the packet, but of course the information card wasn’t filled out for us. So the nurses had to do their job and look in her records.

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I should have know something was up when nurse one asked nurse two if he feels comfortable accessing her port. He obviously had little experience, which came apparent when he didn’t get it the first try. The point of the central line is to avoid getting poked numerous times looking for a child’s vein. It defeats the purpose if you have to try more than once. Accessing a port is a sterile procedure, nurses use extreme caution when accessing a port due to the increased risk of blood infection. Bacteria that live just fine in your mouth, will kill you if it gets in your blood.

I was honestly surprised at how rough they were with a surgery site that was just done that morning, but they had to get the blood to check for infection, so I did what I had to do. I held her little legs and I talked her through the torture. When he was finally able to pull blood, he pulled the labs and was going to apply a new tegaderm directly to My’isha’s incision site where they had placed the port.

I told him he needed to put fresh steri strips back over the incision site. The tegaderm will pull of any scab or skin that is in the process of healing right off with it when they have to de-access her. So he asked for more steri strips from the other nurse.

My’isha is still being held down at this point. Through difficulty getting her accessed, the nurses forgetting tubes, the lack of compassion for my daughter, and being held down through all of it, of course My’isha’s oxygen level started dropping. There was a 3rd nurse in the room to help hold. Rookie nurse of the year asked her to hand him an oxygen mask. HAND HIM the oxygen mask…. HAND IT TO HIM. In my mind, I am like, well… there go your sterile gloves. The thought must not have crossed his mind, because immediately after opening the bag and placing it by her head, he tried to continue doing with he was doing with her open accessed port! May not seem like much, but basically he was going to touch an open gateway to a major artery pretty close to my daughter’s heart. Needless to say, I caught him before he touched her. So… at that point… he was stuck… one hand on her accessed port, and the other hand is now contaminated and cannot come near the site.

We had to wait for the other nurse (must be the mentor nurse in this situation) to get his gloves on to put the steri strip and dressing on. Guess what size steri strips he came back with?

THE THINNEST SKINNIEST STERI STRIPS HE COULD FIND. So he did a thin x-like cross before applying the tegaderm. UGH…….

 

I was just ready to get upstairs the oncology floor where the nurses know what they are doing. My’isha and I both fell asleep in the ER room before our room was ready upstairs. You should have seen the nurses and CA when they saw that dressing job she got downstairs. I told them about our port access experience, and they were all speechless. We tossed around the idea of changing the dressing again, but it really would have likely done more skin damage than just leaving it alone to only be removed once.

So My’isha was able to fall asleep pretty quickly. I on the other made my bed by the window where I used to sleep, but I felt so far away from her. It didn’t feel right. I didn’t want her to wake up and not be able to see me. So I slept in the chair beside her.

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Awake a couple of hours later…

 

The plan for the day was:

  • redo her EKG because the waves were a little too long to qualify for the MIBG treatment study
  • redo her chest x-ray from the previous days port placement surgery to check on the cloudiness in her upper lungs
  • monitor her fever
  • monitor breathing and O2 levels due to issues through surgery and then down in the ER

Once the tests were complete, we waited for results. Her fever went down quickly after the Tylenol and did not come back.  Her breathing was a roller coaster and much more complicated…

The chest x-ray showed good improvement over the previous day and her lungs sounded clear to every person who listened to her. However, her oxygen levels were very inconsistent. She was fine when she woke up in the morning with very low blow by oxygen. I turned off the oxygen around 9 I think it was, because she hadn’t been using it. She was staying in the safe range, until the doctors came around. Then she would dip from time to time throughout the day. She would recover her oxygen levels on her own, but the dips…. the dang dips in oxygen level just keep everyone on their toes.

They brought her a pinwheel and a harmonica to blow to help exercise her lungs. They worked wonders! Until she stopped…. then sometimes her levels would fall right back down again. Sometimes her levels would fall and rise again without her doing anything. I sat her bed I propped her pillow, we sang, we stretched… anything I could think of to keep her levels up.

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Through all of this, I began to notice, how much of a waste of time it was being there. Her lungs sound good, her chest x-rays look good, she is eating, drinking, playing, peeing… the only thing holding her back were the wires for the monitor.

As it got into the afternoon, talk was it looked like we were going home that day. The nurse even popped her head in to tell me when we would need to be back on Monday. But 4pm, 5pm came around, and no one had said anything. At that point, I knew we weren’t going home because we couldn’t keep her oxygen up.

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I began to get upset. I told her daddy and my mom that we weren’t coming home. The sunset seemed to be calling us home, and the more I sat there watching the stupid blue line on the monitor, the more I wanted to leave. I was driving myself crazy trying to make My’isha take deep breaths and all these breathing exercises just to keep her oxygen level from dropping at all. KNOWING she just has a freaking cold!

So, the next time the nurse cam in, I stopped her at the door and asked her what I needed to do to leave. I told her was pointless for us to be here. I told here they weren’t doing anything for her. She told me she would talk to the doctor. An hour later, she came in to tell me the doctor will be in after she gets done with phone calls and such. During the time I am waiting for the doctor come in, I know how I get when I am upset, so I decided I better write down the good points and read and reread the patient rights.

The doctor came in probably another hour later, and asked how I thought My’isha looked. To which I replied, she looks good. She asked if we were ready to go home. To which I replied YES!!!!! I was so happy… she wasn’t going to put up a fight. She was really going to discharge us after 7pm! Right after shift change and everything!

It took another hour to get all of the paperwork together, but My’isha was in the wagon along with our bags and we were ready to go! I text my mom to let her know we were on the way to surprise the boys.

AND THAT WE DID!

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Always remember to stand up for yourself and your kids. If you know… then you know. You are your child’s advocate! Hopefully I prevented an infection. Hopefully I reduced the damage to the incision site. The icing on the cake was My’isha getting to sleep in her bed another night before she goes in for treatment next week. The sprinkles were I got to kiss my boys goodnight and cuddle with my love. We made it home. It was late, but we made it home. It was a LONG 2 days…. but we made it home to our family.

If there is anything you can do to help with expenses over the next 6 weeks, it will be greatly appreciated. We have a tough and busy treatment schedule coming up, so any little bit will help.

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.

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Neuroblastoma has returned- Full-work up —

Neuroblastoma has returned- Full-work up

We traveled to Denver on Wednesday for the MIBG injection. While we were there, I requested to see a bone specialist. It was at that appointment we found out that My’isha’s radius bone in her forearm will not heal form the break until the cancer cells have been killed. Until then, her arm will need to stay in a cast. Luckily, they gave her a water-proof cast so she can still enjoy her favorite past time… swimming. She will have to get a new cast every 3-4 weeks until we see improvement in the stability of the disease and the bone. She is still little and young, so the outlook is good for her pretty little bones.

(Side note: it sucks when your child breaks a bone. If your anything like me, your feeling like a less than perfect parent and blaming yourself and thinking of what you should have done and what to do to prevent another broken bone. When I found out it was the cancer that was breaking down her bone causing the weakness which allowed for the break, I felt not so bad about myself. It’s all cancer’s fault!)

When we met with her new oncologist, Dr. Macy, we were excited to get information. I don’t think her daddy or I were really ready for the conversation we were about to have. We talked about a lot of things that we already knew, like neuroblastoma comes back stronger, different, and quick, and she is going to need treatment and a central line. There were all things we went in expecting to hear.

What we did not expect to hear were things like, think about her quality of life, it is time to start making goals of things that you want to do while My’isha is still here, and hospice. Those types of conversations are VERY hard on parents. I am sure you can imagine. We left worried and overwhelmed to say the least, but we did our best to remain positive.

The following day, Thursday, was CT scan, MIBG scan, and bone marrow biopsy. My mom accompanied My’isha and I this time. The process is something the 3 of us are very familiar with. The waiting for My’isha to drink the contrast, waiting for the nurse to call us back, waiting for the anesthesiatologist, waiting for the procedure, and waiting for My’isha to wake up for anesthesia. The waiting process is something we are quite accustomed to. This time things were a little different…

I remember My’isha’s initial diagnosis in March of 2013 in Oklahoma City like t was yesterday. I remember finally breaking down outside of the bone marrow biopsy room when we discovered her intolerance to Versed and sitting in the MIBG room and seeing my baby’s body light up with neuroblastoma. So when my request to be in the MIBG room this time was declined, of course I had some questions. And… of course I got the best guy to give me answers… NOT!

When I asked the nurses the day before and when we were getting checked in, all fingers pointed to the anesthesiologist. So I asked HIM why if my daughter is sedated would I not be able to be in the room. I was told it was policy. I was told I would be one more person in the room to worry about if anything went wrong. I was told it wouldn’t benefit my daughter at all and that it would only benefit me to be in there. So of course….the experience stated off in the wrong direction.

My mom and I enjoyed a nice lunch together in the cafeteria of the hospital. We took our time and wasted a good hour before we headed back. After another hour passed, I asked for an update. She was still in nuclear medicine where they do the MIBG, which is the longest test, and I figured they would be done with that soon, and then they will need to do her bone marror biopsy which would be pretty quick while she is sedated. It had to have been close to another hour that had passed before my mom went to ask again.

It was close to 3 hours that My’isha was sedated that day, so it makes sense why waking her up wasn’t so easy this time. Thankfully we had a very cool nurse who brought My’isha one of her favorite things of all time… a popsicle! He out it on her lips, but she didn’t budge the first couple of times. When we finally got a reaction from her, it was simply her tongue sticking out of her mouth searching for the popsicle! It was so cute! We continued trying to wake her with the popsicle and getting a great laugh out of her stubbornness… even in a sedated sleep. She refused to wake up, but would literally kick her legs and fuss if we took the popsicle away.

My’isha finally woke up enough for us to get her out and to the car and home to her brothers and daddy. It was close to the end of the day by the time we got out of there, so I figured I wouldn’t received a phone call with results until the following day. So…. the waiting game begins….

To be continued….

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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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