I have felt the need to compose this post for awhile, but I wanted to wait for a firm outcome before
attempting to write it. Back in October of 2010 my entire life changed. See the original post titled:
“The Evil Ependymoma “Bella’s Battle”
Bella and Dad
A little back story……
With Bella (my oldest daughter) being diagnosed with Ependymoma which is an obscure type of cancer that usually effects the brain, my entire life changed.
To be a parent with a sick child is one of the worst situations anyone can possibly experience…. a literal hell on earth a psychological, and emotional nightmare. I experienced some extreme lows that included every aspect of life literally down to collecting and Zoids. (There is even a post lurking about here where I asked if anyone wanted to buy my entire collection.) We did make it through the experience with semi successful tumor resection, again documented here on this blog if your interested in the “first round”.
Little did I know but in February of this year our world would be rocked again by the evil beast known as Ependymoma. Life was good my normal (haha)
habits started to come back, my interest in collecting and seeking rare Zoids was re-ignited. I will never forget the day in I got the call.
I was standing in Azeroth (a virtual continent in the online game of World of Warcraft), speaking through VENT (An audio program that allows players to converse in real time akin to skype) to “Pulski” my long time friend and member of my guild (A group of players that band together in a virtual world, similar to a street gang) when the phone rang…..
I picked it up and the moment I heard Kara (my wife) speak, I could tell something was amiss. When she managed to mutter the word’s “The Tumors are back”, my heart sank, my head started to ache, and I felt such a feeling of despair that it was almost incapacitating. Kara arrived home later, and in anguish and fear we began to formulate a battle plan.
After numerous meetings with the Dr.’s here in Albuquerque, several phone calls and conferences to St. Jude’s in Tennessee, and a trip to Houston Texas to meet with the MD Anderson group a plan was in place. A long, hard road lay ahead of all of us, and we had no choice but to fight the demon yet again. Bella had to have another tumor resection, which would be her second major back surgery. The first time was complex, and I feared the second time would really compromise her physical integrity.
The surgery took place and she recovered like a champ, it was time for more meetings. This time there was a piece of tumor that could NOT be removed due to it’s location (in the base of her spine) and it’s deep entanglement within a bundle of nerves. The surgeon did not feel confident in attempting to remove it as the percentage of Bella having severe motor impairment was immanent. Another extended stay in ICU, and the long recovery from major back surgery took place, alas this was only half the battle.
In meeting with the different groups of professionals mentioned above it was decided that the best course of action would be a “one two punch” type of approach. It has always been one of my worst fears, my daughter had to receive radiation treatment. Complex and scary, I attempted to deepen my knowledge of radiation treatment, which is a dual edged blade. Good on one side as knowledge and wisdom are power, bad on the other as there is so much conflicting and false
data. Keep in mind we are dealing with a VERY rare type of Ependymoma, as it usually strikes the brain. I thought (and still think) that the majority of the approach we took to treatment steps were a bit experimental.
Bella had to have a total of 33 treatments, the first 15 of which were full cranial spinal radiation, followed by 15 of the full spine and 3 “boost” treatments to the unresectable tumor. It was (and still is) my worst nightmare. Thankfully we received a great amount of support from family and friends. Zoiders and my fellow War Craft players sent cards, and one awesome Warcraft friend Marakai would even send Bella a handmade gift. We made a chain to countdown her treatment days and started treatment.
This meant that everyday Bella would go to school, and Kara would pick her up a bit early and take her to treatment. Even after a full 12 hour night shift as a nurse Kara was unwavering in taking Bella each and every time. On top of the treatment were regular blood draws, which Bella (sadly) got “used to”.
Everyday we took a link off the chain, the first treatments were the hardest for me. As the Dad and “Almighty Protector” I felt utterly helpless. My psychological state was declining and it felt as if nothing held promise anymore. I didn’t touch Zoids nor Gundam, and it was a task just to wake up and care for my other two daughters. Towards the middle of the treatments Bella’s hair started to fall out. In a symbolic fashion several family members and Kara shaved their heads along with Bella. I took the remnants of Bella’s beautiful hair and managed to work it all into my dreadlocks.
I will never forget the day that school came, and Kara and I walked Bella to class with a bald head. Thankfully she was very well received by her teachers and friends, and her hair was never an issue, nor her sickness focused on which, for me personally, restored a little faith back into humanity.
Radiation treatment was completed and all seemed to be going well, until the radiation somnolence syndrome took ahold. This knocked Bella back for two weeks. She was sleeping 18-20 hours a day, and couldn’t get out of bed. To see a beautiful, young girl experience that level of depression was sickening. We were told there was nothing we could do but let her rest, and that time would heal her, which it eventfully did. I think one of the hardest aspects to deal with out of the whole ordeal with this disease is the MRI factor. MRI’s are needed on a consistent basis to reflect regression or progression. It seems as if you are living you life waiting until the next MRI date, waiting for the next results and hoping….. praying they are clear.
It was two days ago that the time had come, we had waited enough time to get the MRI results. These results took extra long because of the post surgical swelling that could possibly skew the results. We entered the familiar room, and waited for what seemed like an eternity. Finally a knock on the door,
and not just the regular Oncologist but a second white coat also entered the room. Her regular doctor greeted us, and began to introduce the new doctor. He said “this is Dr (I cant even recall) he’s a brain tumor specialist.
At that moment my chest felt tight, the room began to move, my vision became cloudy, I felt as if I was going to pass out. Thus far we were SO lucky that the Ependymoma was confined to the lower spine. I cannot describe how I felt. It was one of those “slow motion” moments, very Matrix like. It couldn’t have been more than a couple seconds before her regular Doctor continued by saying “He’s just joining us to get a feel for the patient base”. I felt as if another bullet had been dodged and was now focused on what he would say about the current scans.
It turns out that the radiation worked. The tumor that could not be touched via conventional surgery fell victim to the radiation. Her spine is clear, her blood count numbers are going up, and life can resume. I can breathe again. So if you have sent me a email wanting to trade, sell, or buy Zoids and have not received a reply I do apologize.
In closing I would like to thank all of our friends real (and virtual) and family, and in particular Kara. We have been together for about 20 years now, and I could not get through any of this without you. With fierce motherly and family instincts, and your medical prowess I love you. To Zoe and Ivee thanks for standing behind and close to your sister, much love………..
P.S. Now let’s see if I cant land those Zoids on eBay I have been drooling over all week!