‘Breakthrough’ treatment boosts survival in battle with deadly brain tumor

Fred Hutch scientists report early success with novel gene therapy to attack cancer while protecting healthy cells.

via ‘Breakthrough’ treatment boosts survival in battle with deadly brain tumor.

 

A lot to contemplate.  Evan and I met in Washington and are familiar with the area.  There are family and friends there.  UW is ranked #1 cancer hospital west of the Rockies and number seven in the country.  Ranked behind the likes of MD Anderson and Johns Hopkins.

On Monday we are going to take a reduced list, derived from the top tier hospitals we received from the ABTA (listed on my last post) and ask Evan’s doctors which they would recommend.  One step at a time we will get there.

Accidental Activist

I’ve always wanted to be an activist.  When I was younger I imagined chaining myself up to trees, in college I could see myself joining PETA or advocating to stop the slaughter of dolphins…or the inhumane treatment of circus animals (I could go on with my ideas)…now that I am the wife of a cancer patient in a southern state I have begun to really explore my true activist calling: medical marijuana.  I just can’t get over the stigma that comes with the word marijuana.  Sure, there are those who use this plant to get high, but there are true medicinal benefits.  Specific strains are created and cultivated to aid certain symptoms.  This medicine certainly has more use than a recreational high.

Imagine seeing your significant other in pain, defeated, depressed and overwhelmed.  Then, seeing your child running up to him to try to hug him but he is too weak to even pick her up.  Your partner tries to distance themselves because they don’t want to snap at you or feel guilty because you are going through this too.  One thing can help all of that.  Yes, the pain is there, but it’s manageable.  The anxiety and depression: gone, at least temporarily.  Their mood becomes uplifted and they can close their eyes without worrying about pills or chemo or the future.  Because in that moment everything is easier. 

Inspired by Killing Cancer TedTalk

Leafly

Some information gained from today’s limited amount of research is about to come your way.  It is limited because I have a one and a half year old daughter, projectile vomiting husband and stressed out mother-in-law. 

I was able to make a few phone calls for information on sperm banking.  My sister did some research and found this place that isn’t too far away: Duke Fertility Center.  It seems like a sample is $287 and it’s $200 per year to store it.  Patients starting chemotherapy are given appointments within two days of requesting one.  That is hopeful since Evan’s doctors want him to start chemo as soon as possible, which is one month after his surgery…which is August 10th.  So I am hopeful that it won’t take long to get this process going, but it will go no where without the funds.  I also made a call to Fertility Hope but it seems that their spokespeople are out for training.  Nonetheless, voicemail left and contact will occur within one business day.  My last call was UNC Fertility where we had been recommended to go since Ev is already a patient with UNC.  I am being emailed information and will get back to you. 

Also, wanted to throw out this website that I think is pretty great and will explore more later.  I have been thinking a lot about medical marijuana.  I am personally not a smoker, but I can’t help and think what if strains with high concentrates of CBD could help with Evan’s tumors.  I don’t want something to happen to him and wonder what if we would have moved and tried more things than “just” chemo.  Leafly allows users to input multiple symptoms or conditions and find strains designed to help them specifically.  Something to explore for those of you out there that are interested in natural help for illnesses. 

It’s time for an ophthalmology appointment.  I will surely investigate more while we wait…and I suggest you do the same. 

There is hope and there is help. Here’s to hoping it helps!

Now that I have had a few days to process the unavoidable news I am getting down to research.  I think this platform can help give information to people going through something similar, insight for those that are interested or maybe I can even get guidance here.  If nothing else it is a way to record our journey and Evan’s fight.  That is important to me.

So the to-do list is check into fertility help.  This has to get done before Evan starts chemotherapy.  I would say treatment, but he received radiation right before Addi was born.  Evan will become sterile due to his chemo and we want the option to add to our family.  We have a beautiful daughter that is 21 months old; we always wanted two.  I want her to have someone to help her go through life, aside from me.  I have a great older sister and I want Addi to experience that.  But, it doesn’t seem like now is a good time to get pregnant; however, we still want that option for the future.  Part of me thinks that having another child is unfair.  We didn’t want Addi to go through this or to even know Evan had cancer.  We thought radiation would do the trick and now she is going to have to grow up with it.  I am glad there are still options available for Evan to fight.  I know there are some out there that don’t get that…   

Secondly, we figure out how to pay for freezing sperm.  There are resources out there it is just a matter of making phone calls and price comparing so to speak. 

After that it is a huge matter of moving.  The lease at our current home runs out at the end of September.  We have the choice to move closer to Evan’s doctors in Chapel Hill or move to a state that has medical marijuana.  I could use this time to explain how I once opposed marijuana until my husband developed brain cancer and I witnessed how narcotics didn’t help ease his pain, or I could explain the ridiculous amount of pills that he ingests daily to hardly manage symptoms that accompany brain tumors, but I won’t.  Not at this moment.  The truth of the matter is marijuana helps.  Period.

I can’t change the fact that my husband has an aggressive form of brain cancer.  I can’t change the fact that he has to get chemo.  However, I can change where we live so my husband can be more comfortable during this and we won’t face persecution.  He has family in Washington, California and Maine–all states that allow medical marijuana.  His doctors are aware that we are considering moving for this reason and all but one support it. 

The fact is we can’t afford the amount of marijuana in this state that he needs.  The fact is my husband experiences pain, nausea, anxiety, depression, numbness in half of his body, ridiculous headaches and vision problems 24/7.  He worries about moving because he has established care with his doctors here in North Carolina, but I worry about his health if we stay here.  That’s the bottom line.  He can receive chemo in other states.  He can’t receive medical marijuana.  He can’t receive the relief he deserves.

There are a slew of things that accompany moving and planning for the future.  I will try to post our research and the overall process in hopes of helping others.