The Super Nova Project
On December 16th 2017 **(Sorry but it was Dec 21st 2016)** at around 8pm we were informed that our babygirl Nova Jimmie Jeanne Martensen could possibly be facing the fight of her short but very beautiful life! We were blessed with Nova on November 21st 2015, a day that will forever be in my heart and on my mind. There were no plans to bring her into this world, all we knew is that we had been given a responsibility by God, by Mother Nature, by whom ever it is that decides when and to who we are born. We knew what we had to do and I, her father, had a new realization an awakening if you will. I knew that from that point forward I would forever belong to her and would stop at nothing to give her the best of everything. She was my goal, this family was my goal, our future was my goal. About 4 months ago we scheduled an appointment for Nova due to a concern we had about a bump that we noticed on her left inner ankle. The bump resembled nothing more than a small bug bite in size and shape and after a few days with no changes we decided to schedule an appointment with the Pediatrician. It was the start of a long battle that is still far from over. Over the course of these past 4 our little girl has seen numerous doctors and specialists, had 7 different x-rays, 3 Ultrasounds, several several blood tests, a MRI and a CT Scan and today on December 21st exactly 1 month after her 1st birthday we found out that our little princess has Cancer! We are still unsure about what stage it is in and we are suppose to find out today and depending on those results they are wanting to get her into surgery this evening! So with all that being said we are begging and pleading with you all to please help our family and help our little babygirl. We understand that she has a long hard battle to fight as we do too being her parents. We just want to be able to give her the best of everything until this fight is over so please anything will help even if its just a prayer for our babygirl. Thank you so much for your time and listening to our story! God Bless you all!
Just to recap how things have gone for her, at 9mo old we found the first lump that was misdiagnosed 4 times in 3 months until we finally received a proper diagnosis. She had 3 surgeries on her left ankle/foot with in a 6 month period. During that time she also underwent 2 cycles of very intense chemotherapy which caused her to loose all of her hair by day 3 and her eyebrows and eyelashes shortly after. Her immune system was brought so far down that on a couple occasions we thought we were going to loose her. At one point she was wrongfully given an antibiotic that she was highly allergic to and sent her into anaphylactic shock almost killing her. After numerous requests for a MRI of the brain falling on deaf ears our cries were finally answered and much to our disappointment we discovered the cancer had spread to the brain. She was thrown into surgery just a week later to remove it. Nova came out of brain surgery swollen beyond recognition but still came right out happy as ever! After a 5 week recovery and a follow up MRI we discovered she now had leukemia caused by the chemo and Nova's tumor not only grew back but it was nearly tripled in size. Her records had been sent out to St Jude's because of their promise to never turn away a child with cancer but unfortunately for Nova they declined to treat her, that was in August 2017. Nova was then written off and referred to hospice and we were told that our little baby only had 2 weeks to live "at the very most"! Just a few days later while a hospice nurse was visiting Nova went into a string of back to back seizures that lasted about 4-5hrs straight! We thought that would be our last night with our baby but surprisingly it wasn't. Nova not only survived well past her 2 weeks but its been nearly 3 months at the time this is being written. She not only defied the odds and kept fighting but she made a cross country road trip to Kansas and we relocated.
We battled with her previous hospital and oncology team for 2 months requesting records and after being ignored Nova's father had to fly back to CA and physically obtain the records. She wasn't able to receive any kind of care or specialized treatment without knowing what her previous medical history was first. So after Nova's dad got back with records in hand we were able to finally get her scheduled to be seen at Children's Mercy In Kansas City which is a 4 2yr drive. The only other pediatric oncologist was even 2 1/2hrs away but we heard nothing but great things from Children's Mercy so we scheduled her there. Our first visit came to be a slight disappointment because after checking her in to the radiology department for an MRI we were told by the anesthesiologist that the chances of Nova coming out of anesthesia unharmed were not very good. So unfortunately we drove back 4 hours home and waited while Novus condition worsened. Shortly after that visit the mass that had developed on the back left side of Nova's head was so out of control it was clearly causing major discomfort and pain issues for our little girl. After numerous issues with a local Clinic who was supposed to be transferring all of her records to Children's Mercy lost her records and then found them a couple days later we ultimately made the decision to have her life-flighted to Children's Mercy in Kansas City records in hand. Nova's mommy Heaven flew with her and her father jumped in the car and made that 4 hour drive again. Over the course of the next 5 days they conducted test after test as well as the risky MRI and concluded that the tumor in Nova brain not only had been growing but now had consumed over 2/3rds of the left side of her head. The tumor also caused Nova's brain to shift and the bulging on the back side of her head we were told is actually the tumor that has grown out of the incision site where her previous brain surgery was done. So needless to say once again we were told that there was nothing further that could be done to save our precious little girl and we were referred to hospice.
Since taking over home we have had to meet with hospice and discuss some rather heartbreaking but very important issues such as a do not resuscitate order as well as possible funeral arrangements. It's one of the most difficult things apparent could ever be faced with. To have to make these types of decisions is absolutely devastating. At this time we've received an amazing outpour of support and wonderful thoughts and amazing prayers. Nova has been thought about and talked about around the world and I can't say it enough but that alone is such a great priceless gift! Currently we are still patiently awaiting another answer from a clinic in Texas that has had excellent success with a clinical trial. While there have been some recent developments that have been turned over by an excellent follower of Nova's that have brought forth some concerns about this trial Nova's mother and father will be deeply looking into those concerns in order to make the best decisions possible for their precious little girl. All that we ask is that you continue to support The Super Nova Project and share her story. She deserves the right to a beautiful life with her family that loves her deeply and a unborn baby brother that I'm sure can't wait to meet his big sister! Thank you all and God Bless!
There you will find a few recent video updates and links to other bits of info. We are on a desperate mission to raise funds to get our Super Nova to TX for treatment and so far we are seeing a huge amount of support. We cant thank you all enough for everything you have done, for all your positive thoughts and most of all for all your prayers! God Bless you all...
I just got off the phone with Nova's Oncologist at Children's Mercy Kansas City. We have been trying to get a hold her the entire weekend about Nova's worsening condition. After finally hearing back from her and informing her of what's been going on she suggested once again that we get a hold of hospice and make arrangements. She also informed me that she is almost sure that the Neurosurgeons and anesthesiologists would not feel comfortable enough to do any procedures to relieve pressure from Nova's brain and the fluid that was building due to certain risk factors! So here we are back to square one, why is no one helping our baby!!??
Stop ✋ can't keep crying every time you update .. this doesn't make it any easier for me .. I don't know what to say because I can't even begin to imagine what you both are going through but know I feel the pain and I do know God knows all and sees all. I hang tight to the miracle in which we will see ... in Jesus name! Keep the faith family! Always
I know how frustrating it could be. I had the same problem with my Mother before she passed away. I was her advocate and made sure she was taken care of. All of the doctors that are treating Baby Nova should be on the same page and you should have access to contact them about that. No one can really diagnose her except her oncologist. They may have witnessed other cases, but unless they want a lawsuit on their hands for Baby Nova being misdiagnosed, they need to be more careful how they approach you. Watch carefully how she is treated, mark down all her medications and what time she takes them. Keep all discharge papers because it will note medications given. You can then question if something does not add up right. We have to be our own advocates for our healthcare. I stayed by my mothers side and never left her until God took her home. I practically lived all summer in the hospital with her and saw a lot. I totally agree with you that our healthcare system needs complete reform. God bless Baby Nova, Lord circle Your angels around her for protection and give her parents strength during this difficult time. In Jesus precious name I pray. Amen.
Nova touched my heart and I know I’ll neber forget her fight. I pray that through this sadness and loss of this beautiful angel that hospitals begin to reform and communicate quicker so families don’t lose time struggling to get a quicker diagnoses, a quicker game plan to fight this disease. Nova thank you for sharing your life, thank you Josh and Heaven for being so open with everything. I’m going to be asking lots of questions for my sons 2yr check up, things I never imagined. God bless you all. May you find strength in your time of need. We are all here still for you and your family! God bless ❤️
Love you guys will donate today
Prayers and hopes that she will get better.
I ask the other day, Have you contacted St Jud, can they help at all, I am praying like crazy
People it is so heartening to see so many helping this beautiful little girl! I want to thank everyone - as a friend of the family for the support. Let's keep it going, keep on sharing - a few more days or maybe a week and we could certainly get them to where they need to be. It is the Christmas Season and you ARE giving this family something to be Thankful for - that is HOPE. THANK YOU!
Praying for this beautiful baby girl! I'm so sorry that this is happening! God is in the miracle business!! Praying for each of you!
Josh, we are all praying for Nova as well as you and Heaven. I so appreciate you giving us updates. You are faced with a decision no one should have to make. May God Bless you. Thinking of you always. Sending Hugs and Prayers.
Thank you so much for the update. We continue to pray for this beautiful Angel Nova, as well as you and Heaven. I have had several church members ask how she is, I will pass this information on. You are a strong wonderful Daddy. Stay strong, we will continue to pray. Sending love and hugs to all.
I know that some of you people will probably condem me for what I am about to say, But you really need to look at the dates in the article this is only August of 2017
My heart is breaking for your family right now. I do not know what to say except I will continue sending all of my prayers and all of my Love to your beautiful family. I am so Sorry! Just hang in there and Love her and continue to pray!
Love you kids! Thank you for the updates
We don't give up! Jesus is Lord of all!
Josh.. Heaven my mom Gracie Huerta sends her love and the $25 is from her ... blessings family!
That is so precious .. now I understand why it's so important for the whole family to be together.. no matter how rough and stressed it gets ... blessings to you all