This is officially My’isha’s second port placement. She has had numerous broviacs due to complications and breaks, but the one port she had lasted the entire treatment last time. Surgery is never fun and anytime you are dealing with accessing a major artery, especially so close to the heart that distributes blood throughout the body. An infection would have found its gateway to the entire blood supply through the heart. So caution and safety and microbiology is very important in this story. Continue reading for the port placement story. The second part of this ordeal will be following soon. Thank you all again for your support. IF you are able to help financially in any way, please contact us for info. Thank you so much for reading.
My’isha got her port placed this Tuesday. We are not new to this procedure at all. This is her second port, but she has been though at least 5 central line surgeries. The problem we came into this procedure with was a runny nose. That runny nose was the beginning of trouble for us.
She went back for her procedure as normal. I notified everyone I talked to about her runny nose before the procedure began. We went for the procedure as normal. The first call I received was to ask if they should leave the port accessed, to which I answered no if they were able to pull labs. Her daddy and I had to go up for training, so my mom stayed and waited for the nurses to bring her back once My’isha was awake enough to leave. The last time she had anesthesia, it took a little longer than normal for…
The life of a cancer mom consists of so much waiting…. We sit in waiting rooms and then go back to dr rooms to wait. I guess every every parent has to go through that wait when they take their child to the dr office, or urgent care, or the emergency room.
We also have to wait for scan time, wait for results, wait for procedures to be done, wait for our baby to wake from anesthesia, wait for blood counts to come up, wait for radiation levels to drop, wait for nurses to come assist, wait for the schedulers to call with your schedule, wait for the dr or nurse to call with answers. The waiting game is OUR job.
We do our best to pass the time. That is the easy part. Keeping our mind off the situation at hand or letting it not affect us “on the outside”…
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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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….
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.
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.
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.
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.
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.
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!
Here we go again. It has been 6 months since My’isha’s last routine CT scans. This time, we are a little more nervous.
You see, back in 2012, we were in the ER for a cold. Upon doing the chest x-ray, the doctors notice a blood clot of hemorrhage on My’isha’s left adrenal gland. The physicians didn’t think much of it and said we will follow-up in 6 months unless anything changes. Before the 6 months was up, we noticed My’isha’s weight had leveled off, which led to further testing and eventually the ultrasound that revealed the tumor in my babies abdomen.
So when we hear that her weight has leveled off yet again… well… we are a little nervous to say the least.
All it takes is one growth to land my daughter back in the fight for her life. A fight that is lost by 0ver 5 children daily. Almost 2,000 children will die of cancer this year. The truth is, My’isha could be one of them. It is a tough pill to swallow, yet it is the reason we live each day truly blessed to have her in our lives. She just keeps smiling and making the world a little brighter each day.
I found this free dresser for My’isha the other day on Craig’s List.
When I went to go pick it up, I thought it would be a fun project to paint and fix. However, I wasn’t expecting it to be in such good condition. I mean, yeah, it can use a paint job, but it had already been repainted. Other than the paint chipping in place, the water damage to the top, and some paint or nail polish stains, it is in GREAT condition.
The gentleman that gave me the dresser also gave me 3 pails of paint and painting supplies including paint brush, paint pan and liner and a roller brush. He was setting me up for a fun paint project and getting rid of a bunch of paint in the process.
When I got the dresser home and in the house, I set it by the back porch so I could get it ready for painting. The more I looked at it, the less I wanted to take the chance of messing it up. When Mikey started telling me everything I needed to do to prep it for painting, I really started debating.
So, here is my dilemma, do I paint this dresser, or not? I already lined the inside of the drawers, I wiped it down, and I fixed the divider between the 2 top drawers. This will be my first big painting project, so I am not sure how well I will do. Is it worth the risk and the extra work of repainting at this point?
We are so excited to be able to offer gold items to help you show your support and awareness for childhood cancer. I know our month was last month, that being said, I noticed EVERYTHING go pink on the first of October.
Which is great! I just wish our kids had the same support. So, while I am still thinking of ways to make September as GOLD as October is PINK, I was able to pick up some items to help with our fundraiser.
The holidays are coming quickly, and I am always late with everything. So, if I want to have my first delivery ready to go to kiddo in the hospital, I need to raise money for supplies. I would like to do bags or totes for them to carry some of their favorite things to and from wherever they may have the opportunity to go. And when they get something new or they out grow it, it can be decorative…
This is a great wall decoration for…. well, forever.
I know families would like to make their own items as well, so delivering the supplies and a shirt to decorate inside of the gift bags are also in our hopeful ideas. Help us make this a reality! I am working on adding the Paypal buttons added on this post. If anyone can help me with this, please let me know. So, if your interested, please email us at Miracles4Myisha@gmail.com, or find us on Facebook http://www.Facebook.com/miracles4myisha
Thank you for your support and stay tuned for MORE!!!