Take the chance and proceed without radiation and steroids with a laundry list of side effects or proceed with radiation knowing there is a great likelihood of buying her more time. This is the hardest, fastest, most self-conflict-inducing decision I have ever had to make. This was my thought process:
Some parents have decided to go the natural route, and there is absolutely zero ‘right’ or ‘wrong’ way to go in this case, as that is the wishes of those families with their own beliefs and intuitions. The natural route consists of many different options; diet, vitamins, cannabis, prayer, sweats, etc. Many of these options have proven to be extremely effective with several different cancers with much less, if any, side effects compared to the radiation, chemotherapy and steroid/medicinal approach. The only downside is, of the hundreds of cases we reviewed on DIPG, the results are so scattered and seems to confirm the theory that this tumor just truly has a mind of it’s own when it comes to timelines.
The other option is medicinal. It has been researched, tried and (usually) true. The side effects are documented and available for review and several doctors stand by the advantages of such treatments. While the side effects vary and can sometimes put a bitter taste in your mouth, the results tend to outweigh the harshness of the treatment depending on one’s perspective. Our option here is, begin radiation as soon as possible before the tumor progresses further and buy her time. The amount of time is unknown and completely depends on how Janaya’s body receives the treatment. She would be on a max level deemed ‘safe’ that she can have for the next 3 years, but has the potential to shrink the tumor tremendously and buying us months, if not years, more time than what we are looking to have now. More time is a guarantee here. The kicker here is… The steroids.
The steroid Janaya would be required to take is called Dexamethasone. It is a high dose Corticosteroid that is designed to reduce the swelling in her brain during the radiation treatment to prevent doing more damage than good. Sounds awesome, right? Well… it also causes an insatiable appetite which aids in DRASTIC weight gain. As fast as the weight comes, it takes 3-4x that to come off, which then takes a toll on a child’s personality, confidence and self esteem. When asked if we could resume with radiation without the steroid, the doctors all looked at us and almost in unison said “please don’t…” with a look of pure desperation. Upon looking into the opposition, it turns out the results without steroids are quite horrendous for all involved. Radiation without steroids is NOT an option.
So, do I take my chances holistically knowing that my daughter won’t have to face the potentially devastating side effects a drastic weight gain could cause but with the size of the tumor and how it is wrapping around her artery, knowing there may only a few good weeks left. OR do we proceed with the radiation and, if all goes well, buy Janaya months, even years potentially, and attempt to manage the side effects of the steroids by encouraging a healthy mindset for Janaya through positivity and love, trying to balance her diet and introduce body positive nutrients and vitamins.
Within hours, we knew what we had to do… We needed more time, guaranteed time. We chose both routes, the holistic to be introduced after radiation finished so not to overwhelm her poor little body. Of the research we had done on hundreds of different cases of DIPG, we concluded that there was not enough evidence showing holistic alone could buy more time and a better outcome. Across any approach, the results vary and seem to impossible to gauge either way. The date was set to make her shell for radiation used to keep her head still, and the doctors whisked away to build her treatment plan. 30 days, Monday to Friday, aggressive and max dosed to shrink as much as possible within the allotted time.
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This post is merely my point of view on our options and is by no way intended to demean either treatment options. As mentioned, there is no ‘right’ or ‘wrong’ way to treat DIPG and every parent and family is entitled to treat their child as they see fit. Some won’t agree with the holistic route and others won’t agree with the medicinal route, but regardless this was our decision and should be respected as such. Good luck to any family battling any form of cancer or other forms of illnesses and we wish you all the best on your journey! ♥
To prevent an over-extended post, part 2 will be posted June 30.
As always, we appreciate everyone’s continued support and love. For daily, more cheery updates please check out our Facebook page, Janayas Journey, which does NOT require an account to be viewed from a web browser.
** Date the post was written was changed to allow posts to show in order **
** Originally written June 29, 2018 **