Miracles 4 My'isha

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

What will MIBG be like for My’isha?

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

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

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

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

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

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

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

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

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

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

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

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

 

 

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

Smiling through it all. Waiting for scans and bone marrow aspirates.

Neuroblastoma has returned, but to what extent?

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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!

Neuroblastoma has returned- Full-work up —

New cast, nuclear medicine injection, full work-up, and outlook...not looking good after this appointment... but still SMILING

Neuroblastoma has returned- Full-work up

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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….

Donations can be made by clicking HERE<<<<

Here we go again. — January 23, 2016

My'isha is always smiling! Even waiting to go back for CT Scan.

Here we go again.

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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.

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

My'isha being My'isha. Beautiful and happy as always.

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

/Mommy (Aisha)/Leave a comment

My’isha finished treatment July of 2014. It took just over a year to clear my daughter of the stage 4 neuroblastoma that tried to take over my baby girl’s body. Some people don’t realize, that the treatment itself can cause secondary cancers, not to mention the recurrence rate of around 40%. This explains the CT scans every 6 months.

So, when my daughter looks like she is starting to loose weight, I contact her PCP to check on her weight gain…

And when, according to her chart, she shows no significant weight gain for close to 6 months, we order labs…

And when the labs come back “reassuring”, we wait for her next set of routine scans…

So, when they see a swollen lymph node under her arm pit, we keep an eye on it…

And, when I notice it has grown in just 48 hours, I contact her PCP again…

And, when she says she wants it out in a week for biopsy, we go to see the surgeon.

So, when the surgeon examines the lump under my daughter’s arm, and says it is concerning and he wants it out sooner than later, and he proceeds to tell me WHY My’isha’s oncologist does routine scans, what do we do now?

Now, we wait. We wait for surgery. We wait for pathology results. We wait for phone calls.

We enjoy this somewhat normal life we have now. We enjoy each other. We enjoy our princess warrior as she is today. We wish for the best. We prepare for the worst.

Living the life of a cancer family is not what I had planned for myself and my family. It seems this life choose my daughter and because My’isha is the absolute most amazing little girl we have ever met, we chose this life right back.

We will be starting My’isha on CBD this week Some people may not agree with our decision. Yet others may criticize us for waiting so long. All I know is that as mothers, we do our best to make the right decisions for our children. I do not know what is under her arm, although I have a pretty good idea based on how quickly it grew and it’s unresponsiveness to the antibiotincs.

Best case scenario: They remove it successfully with no complications. Benign and no further treatment. <<<< This is what we are hoping and praying for folks!

Donations can be made direct to Miracles 4 My’isha’s paypal. We also have #NoOneFightsAlone keychains, car magnets, and gold pins, as well as handmade hemp items listed at http://www.facebook.com/Creations4Miracles4Myisha

Please share our websites and blogs as well. As always, #SmileThroughItAll and THANK YOU so much for reading. #ANewKindOfMommy

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

Paint or don't paint... that is the question.

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

/Mommy (Aisha)/3 Comments

I found this free dresser for My’isha the other day on Craig’s List.

Free dresser I found on Craig's List
Free dresser I found on Craig’s List

When I went to go pick it up, I thought it would be a fun project to paint and fix. However, I wasn’t expecting it to be in such good condition. I mean, yeah, it can use a paint job, but it had already been repainted. Other than the paint chipping in place, the water damage to the top, and some paint or nail polish stains, it is in GREAT condition.

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Stains and water marks on the top of the dresser I found on Craig’s List
The gentleman that gave me the dresser also gave me 3 pails of paint and painting supplies including paint brush, paint pan and liner and a roller brush. He was setting me up for a fun paint project and getting rid of a bunch of paint in the process.

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Chipped wood that has already been painted over.
When I got the dresser home and in the house, I set it by the back porch so I could get it ready for painting. The more I looked at it, the less I wanted to take the chance of messing it up. When Mikey started telling me everything I needed to do to prep it for painting, I really started debating.

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I know it is not perfect. It was free. To paint or not to paint is the question.
So, here is my dilemma, do I paint this dresser, or not? I already lined the inside of the drawers, I wiped it down, and I fixed the divider between the 2 top drawers. This will be my first big painting project, so I am not sure how well I will do. Is it worth the risk and the extra work of repainting at this point?

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

My'isha's B.M.T bithday was on her actual 2nd birthday.

Creations 4 Miracles, gifts for childhood cancer warriors

/Mommy (Aisha)/1 Comment

Creations 4 Miracles 4 My’isha 

I began by making shirts for Stevie Tre and My’isha on her first birthday. Thinking back, I had to have been inspired by the boutiques I was shopping at for My’isha in Oklahoma and Colorado Springs. I managed a Chuck E Cheese in Oklahoma City and I saw my fair share of SUPER CUTE birthday party themes, and I couldn’t go to my job with a lame party, right?

My'isha's 1st & Tre's 3rd brithday at Chuck E Cheese in their handmade birthday shirts.
My’isha’s 1st & Tre’s 3rd birthday at Chuck E Cheese in their handmade birthday shirts.

Here is the shirt I made for Stevie Tre’s birthday. I had so much fun! I met him choose the patch that he wanted and the style of number, and I did the rest with some help from my cousin Stephen Burke.

243143_10151070729622073_1520222223_oHe loved the shirt and wore it many times after his birthday.

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Here is the onesie I made for My’isha’s 1st birthday.

This is the first onesie I made for My'isha.
This is the first onesie I made for My’isha.

At this point, she had not been diagnosed with cancer, but we had recently found out about her 6q25.3 microdeletion.

She was already so much of a princess, turning warrior, by her 1st birthday.

The front of My'isha's 1st birthday onesie.
The front of My’isha’s 1st birthday onesie.
The Princess Warrior's 2nd birthday and BMT bithday onesie.
The Princess Warrior’s 2nd birthday and BMT birthday onesie.
My'isha's B.M.T bithday was on her actual 2nd birthday.
My’isha’s B.M.T bithday was on her actual 2nd birthday.

By the time her 2nd birthday came around, she well into chemotherapy, and she received her stem cells from her stem cells transplant on her 2nd birthday. I HAD to make a onesie for that day!

I have made a couple of shirts for myself and friends for fundraisers and to send to folks who were able to donate a certain amount to My’isha’s B.M.T. Birthday.

I still have 2 of the shirts I made, one hangs above her bed, and the other is tucked away for safe-keeping.

Fundraiser tee worn at our first fundraising event.
Fundraiser tee worn at our first fundraising event.

My’isha and I had earned a reputation from a local radio station, called 1Blunt Radio, of Colorado Fans. They invited us out to a tail gate party where they were to dedicate their newly released, Colorado Fan, song to My’isha. Here are a couple of onesies I made for that season.

My'isha's Bronco sleeveless onesie
My’isha’s Bronco sleeveless onesie

That was the year we went to the Super Bowl too. Go BRONCOS!

My'isha's longsleeve Broncos onesie.
My’isha’s longsleeve Broncos onesie.

The actual shirts themselves are the most expensive part. I am willing to personalize gear the you already have or find something new. Also check out our handmade jewelery made by My’isha’s oldest brother Alijah.

Small items Alijah, Xavier, and I made for My'isha's fundraiser.
Small items Alijah, Xavier, and I made for My’isha’s fundraiser.

All funds that are put into paypal.me/miracles4myisha will go towards obtaining materials to deliver to children who are inpatient during an event or occasion. I am looking to have a nice size delivery for the Children’s Hospital of Colorado by Christmas time. For more information please do not hesitate to email Miracles4Myisha@gmail.com or reach out to us via Facebook as well.

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