Monday, April 20, 2009

April 20th

Malignant! That is what they tell us. What type of cancer? We will have to wait. The words we anticipated after a week of test that were being scheduled rapidly and with urgency. There was the intense need to find out what this mass was in Robert's chest. Still - barely enough time has passed since we first heard the words - "We found something" - "A mass in your chest" and we are still dealing with the shock of the possibility of a secondary diagnosis of cancer, much less the reality that the mass is malignant. The recurrence of brain tumors was not shocking. The mass in the chest was shocking. Both at the same time is shocking. Everything just got ten times more complicated.

It is as if Robert's body is fighting against him. More cancer, cognitive functioning that is disrupted from brain tumors, and constant fatigue even before new treatments have begun. He remains strong, but how much can one person take? He tries to stay focused on what he has to do to fight the cancers. We stay committed to lift each others spirits when necessary and to refocus each other when times seem overwhelming.

Oct. 15, 2007 - it was if someone stuck a sword through my chest with the diagnosis of a glioblastoma multiforme grade IV. I pulled the sword out and over time the puncture began to heal. April 8, 2009 - is was if someone stuck a knife in my heart with the official diagnosis of a recurrence of brain tumors. There was no time to pull the knife out before the news of a mass in the chest was presented. The knife has been pulled out, but I am not sure if these wounds will ever heal. At he very minimum, the scares will be felt for a lifetime. My heart aches for all of us. Our family had already changed after the initial diagnosis, but this new stretch of the journey may have the greatest impact on our family. I hope that we can find the lesson to be learned in this deep pain. I hope that we can stay open to the belief that everything happens for a reason and if we are open to the entire experience - we will all be stronger for it.

We are sad. The kind of sad that no one would ever wish to experience. The kind of sad that hurts. The kind of sad that can make you feel physically sick. The kind of sad that changes your perspective of everything - yourself, your relationships to others, your purpose on this earth , and the importance of finding the truly important things in life. The news is devastating and it is as if the 'bump in the road' just became a mountain. We are ready to climb the mountain and will do whatever we have to do, we will go wherever we have to go, and will work with who ever we need too. We are together and will fight together with all of the support that is offered.

There are those that support us and we are incredible grateful to so many people. We are truly living day by day right now and are thankful to those who take care of our boys without any prior notice. We are thankful to those who take our boys to try and keep their schedules as normal as possible. We are thankful to those who look after our boys to give us time to do what needs to be done. They are taking care of our most precious gifts. We are thankful to those who send us messages of hope and words of encouragement. We are thankful to those who send us positive thoughts and prayers. They are keeping us moving forward. We are thankful to the friends who support us in our efforts to raise awareness and fundraising efforts. They are making a difference! We are thankful for the medical teams who have and will work to determine the best treatment options. They give us hope. Thank you!

12 comments:

Teresa Darst said...

Dear Robert and Family:
You're in my thoughts and prayers. Hang in there and be strong.

Ceil Booth said...

We are here for you for whatever you need. Our hearts ache to hear the news, but we will continue to pray and stay hopeful. We love you all. Stay strong.

The Booth Family

Linda Ferbert said...

As always you are in my thoughts and prayers. I know you will find the strength to fight this newest battle with the courage that you have fought all the others. Please call me for anything you need.

alaboiss13 said...

Thank for letting us all know the information you find out. I will continue to keep all of you in my prayers and hold onto hope.

The Laboissonniere Family

Leah said...

Words cannot express how sorry we are to hear this news. We are here to help you all in this fight. Whatever you need, do not hesitate to call.
Love, Daryl and Leah

Tara said...

I am typing this through tears and wish there was something I could do or say......You are the strongest people I know!
As always, I will pray and be thinking of you through this!!!
LOVE, Tara

amy said...

We are with you every moment of everyday. Honestly not a minute passes that I don't think of you, pray for you and wonder why you have to go through this pain. If all this rain could symbolize the sadness and pain I feel for you all, it is just a teapot full. But I also know that there will be brighter days and moments ahead in what seems such a dark and gloomy time. You are stronger than you know and we are so proud of the fact that you can get up each day and take care of the boys, each other and all the appointments, phone calls, paperwork, fundraising etc.and still find humor and good in life and others. You are strong and committed to the fight! Amazing is what you both are and we love you!

Angie McLean said...

That's right! We are sad but we are also mad! We are also glad in the life that we have to fight for.

It is all about perspective. Keep those rose tinted glasses on during this fight of your lives. Keep both hands up for the fight. Keep your head up and look forward...we are looking forward to your healing through your fight.

Ok...so this is not some awful nightmare that your family has been thrown into. This is your reality and for that we are here to take the edge if only for a second...as friends and family all that we can offer you is support...but you have one another to hold onto and calm the storm.

Know this...Robert...you will find a way to fight this...our prayers for you Tammy is to take this walk by his side. We pray that news does not cloud your spirit to know that ultimately you will have a bright future to share!

Know you are loved. Yes...the best thing we can do is Pray. Yes...you are carried on this journey.

We love you so very much!
Angie, Chuck, MAddi and Gabbi McLean

Anonymous said...

Robert,
My heart and my prayers go out to you and your family... I pray that you have the strength and that your medical team are given the tools, so that you may triumph over this horrible disease. May God grant you and your family a miracle, we received one when Kaedin beat Wilms last year so I know that all things are possible!
Jen Fryman-Williamson

Anonymous said...

Tammy and Robert,

I am praying for serenity. To change things that I can, accept things that I cannot change, and to have the wisdom to know the difference.
Take care of each other.

Love, Chitra

Linda Murveit said...

I am saddened to hear of your latest struggles and challenges. I am moved by your words and your strength and your fight. My thoughts are with your family and my boys and I will do whatever we can to help. I wish you strength, health, courage, peace, and the continued gift of time.

Anonymous said...

Hi Robert and family, I have heard about your story for a while now through other people at Atholton, like Amy and Leah. I met Tammy once in the lounge. You dont really know me, but I am praying for the entire family. I will come over and do your laundry, load your dishwasher, whatever you need, (except clean the toilet, lol). You are in my thoughts and prayers, and I admire your strength through these difficult times. Love, Nikol V.

My Condition - Glioblastoma Multiforme (or GBM)

I was diagnosed with Glioblastoma Multiforme (GBM). This condition has four different grades (I - IV). My tumor is a grade IV GBM. This is the most aggressive GBM tumor. I have included a little section of The Essential Guide to BRAIN TUMORS below to describe the condition more completely.

Astrocytoma

An astrocytoma develops from star-shaped glial cells (astrocytes) that support nerve cells. These tumors can be located anywhere in the brain, but the most common location is in the frontal lobe. Astrocytomas are the most common primary CNS tumor.

The physician, usually the neurosurgeon or neurooncologist, will discuss the type and location of an astrocytoma. The pathologist will assign it a grade. Astrocytomas are generally classified as low or high grade. Low-grade astrocytomas (grades I and II) are slow growing. High-grade astrocytomas (grades III and IV) grow more quickly. The main tumor type is listed for each grade. There are additional tumor types in each of these grades.

The WHO classification divides astrocytomas into four grades:

  • Grade I Pilocytic Astrocytoma
  • Grade II Low-Grade Astrocytoma
  • Grade III Anaplastic Astrocytoma
  • Grade IV Glioblastoma Multiforme (or GBM)

Characteristics

The characteristics of an astrocytoma vary depending on the tumor’s grade and location. Most people are functioning normally when diagnosed with a low-grade astrocytoma. Symptoms tend to be subtle and may take one to two years to diagnose. This is because the brain can often adapt to a slow-growing tumor for a period of time. Highgrade tumors may present with changes that are sudden and dramatic.

Symptoms

  • Headaches
  • Seizures or convulsions
  • Difficulty thinking or speaking
  • Behavioral or cognitive changes (related to thinking, reasoning, and memory)
  • Weakness or paralysis in one part or one side of the body
  • Loss of balance
  • Vision changes
  • Nausea or vomiting