The fact is, I’ve been through such an overwhelming mix of
emotions in the past several weeks that I haven’t wanted to talk about “the now
what” with anyone except for close friends and family. Now, however, I’m feeling
like it is time to let others who care about Lily and our family know what we
have been going through.
We didn’t fully realize until recently what a dire sentence
relapsed alveolar rhabdomyosarcoma was. We didn’t learn until after the cancer had
come back that conventional doctors see themselves as really only having “one shot” at this
type of cancer- the “one shot” being the aggressive yearlong chemotherapy
regimen that Lily already went through.
When she finished chemotherapy, we were really made to feel like
everything would be fine and that the treatment had worked. Now we realize just
how naive and misinformed we were. We are learning that for stage IV cancer,
chemotherapy rarely keeps the cancer from returning and that because almost
every type of chemotherapy was used in her last treatment, this new tumor is now
resistant to those drugs. Additionally, some of the chemotherapy drugs- like Doxorubicin- have lifetime allowable limits, and Lily has already been given that limit.
When we met with Lily’s oncologist, he laid out 3 treatment
plan options:
1.
More aggressive IV chemotherapy and
radiation.
Lily would be given 10 courses of 3
chemotherapy drugs. One of the drugs is
an experimental drug called Bevacizumab that does not allow your body to build blood vessels. The side effects of this drug are things like
holes in the stomach and internal bleeding.
Lily
would only receive radiation if the radiologist felt that he could radiate the
tumor without harming her heart or other organs. For this treatment plan, the
doctor would be following a study protocol with a success rate of less than
10%. According to statistical data, the chance that the cancer would stay away
for over 5 years is 3%.
Almost
unbelievably, this is the treatment her oncologist recommended to us. He
felt that she “tolerated” chemo and radiation so well the first time that this
could be her best bet. This is even as he emphasized that the cancer would likely
come back. He also actually encouraged
us to get treatment in Tennessee so that she wouldn’t just be following the study
protocol, but would be on the study
and would be “helping other kids.”
In other words: there is really very little hope, so let’s
turn your daughter into a guinea pig so doctors can test out their poison on
her and then at least her life won’t have been in vain.
Please forgive my selfishness, but
I refuse to inflict extra suffering on my child in order to benefit the Big
Business of Cancer.
2.
Middle of the road.
Lily would take 2 different chemotherapies
at home in pill form. She would have to
stay on this treatment indefinitely. In other words, it’s not curative. This
option could possibly buy us a few years and Lily would be on the treatment
until it became obvious that it was doing more harm than good. The doctors see the
tumor as being resistant to therapy because they already used these drugs this
past year. This treatment would just be more of the same and while it may shrink
the tumor, it would not cure her.
3.
Pain management and parental care.
The fact that they offered this
option at all really highlighted for me how hopeless the doctors see the other
treatment plans they offered. If they don’t see more chemotherapy as helpful,
then why would I subject her to that?
In the past few weeks, we have been to see 4 other doctors and left each office just as discouraged and confused as when we spoke to Lily’s main oncologist.
The doctor from Cardon’s Children’s Center recommended the intensive chemo, radiation, AND surgery if he could find a surgeon willing to do it. The reason he might not be able to is because of the location of the tumor (in Lily’s chest, up against her spine) and the fact is that they wouldn’t be able to remove all the cancer.
We also talked to a doctor at Envita Medical Center in Scottsdale (not covered by insurance), who’s alternative treatment plan would cost us up to $125,000.
By choosing life, I mean living life to the fullest and making choices that support life- not destroy it. None of us know when we are going to die. I sincerely believe that violently struggling for life until the very end is not the way to live or die; nor is taking drugs that diminish and slowly drain life and are often just as deadly as cancer itself.
More than anything, this past year has taught me acceptance. And it truly is the ONLY way to peace and happiness, regardless of circumstances. Acceptance definitely does NOT mean rolling over, giving up, or losing hope. In fact, acceptance is nothing if not empowering. It allows you to perceive the situation without fear or anger; things become more clear and simple.
Why do we fear death in our society? I’ve had to look long and hard at this question. For me, losing a loved one isn’t about fear of the unknown. I don’t fear death in that sense. It is the pain and sadness that comes from not physically being with that person. It is the dissolution of all dreams and hopes regarding them, especially when it is someone so young who still has so much to live for.
No parent should have to think about this, and yet, I’ve had to accept that this is something that could happen, as indescribably heart wrenching as it is to think about losing my girl- my sweet daughter that I wanted so badly and was so lucky enough to have.
I’m still working on it, but I know that this acceptance helps to dispel fear and gives me the strength and clarity to make the right decisions. Since we found out about the new tumor, we have made some extreme lifestyle changes. We have cut out all foods except for organic fruits and vegetables and some organic grains. And we have been juicing fresh organic produce every hour of the day. This vegan, wheat free, salt free, sugar free, process free diet is intended to help nourish and detoxify Lily’s body. Ironically, this “treatment” is MUCH more difficult than going to get plugged in at the doctor’s office or taking a pill.
But I have faith in the body’s ability to heal itself and in
the medicine of nature. We need to give Lily the chance to heal naturally,
something we didn’t do enough of this past year. This is with full knowledge that one’s healing
journey doesn’t always end with one overcoming their disease. Genuine healing
involves much more than that. It is also something that affects and inspires
whoever comes into contact with that person. Nonetheless, this path provides
more hope and comfort than going down the same “dead end” road of cutting,
burning and poisoning the body in the hope that it kills the cancer and not the
patient.
These are not new sentiments for me. Although we did go with
conventional medicine in the beginning, it was due more to ignorance and fear
more than anything. Our experiences in the past year only exposed me again and
again to just how much doctors in this field have distanced themselves from the
mind- body connection, the importance of nourishing the body, and the medicine
of healing the whole person. This is
particularly true for pediatric cancer patients.
So what now? Well, we are currently following the Gerson
Therapy. Lily has had multiple blood tests by the doctors at Envita and we will
be able to find out what supplementation would most benefit her. We will use
some alternative treatments such as high dose vitamin C IV therapy to help
boost her immune system. We will also
look more closely at some other immunotherapy treatments available to us,
although most are extremely expensive and not covered by insurance.
I will continue to seek out information. This Gerson therapy
is a full time job, but hopefully it will get easier as we get more used to it.
I will be starting back at work this week.
Meanwhile, Lily has been feeling just fine. She has no pain
or other symptoms of the tumor and is full of energy. She’s been playing with
her friends, swimming, dancing, and creating art, as usual. She has still been going to weekly
reiki sessions and has agreed to see if she likes yoga therapy.
She was disappointed that we had to cancel our fun filled,
tepee dwelling summer vacation in Idaho, but we still might take a short trip
somewhere where we can juice. Lily also has her playhouse to look forward
to. Make a Wish will have it built in our backyard mid- August.
