Long time ...most recent update

Unfortunately, I’ve put off writing this blog post for over a month.  Since the last time I wrote, I’ve had two relatively major milestones.  The first is making it past a year since my surgery with no evidence of recurrence.  The second, which is almost as exciting to me personally, was finishing chemotherapy.  Until a recurrence happens, God forbid, I can pretend like there’s nothing wrong with me for two months at a time.

I can honestly say I’ve never been happier to take a pill than that night.  I came in late because a friend I’ve met through dealing with this whole thing took me to a concert on the last day, and I was strongly tempted to wake Eda up to get some sort of congratulations, but I decided it was much better for my health not to do that.  I let her know what a big deal it was to me the next day instead.

What became interesting and immediately apparent to me is how much a creature of habit I really am.  When I was first faced with the diagnosis, I told myself I would change the way I approach things and appreciate every moment much more.  I’m still trying to do that when I think about it, but I don’t think I’m that great at it yet.

Since I just finished chemotherapy, and now I don’t have to worry about taking anti-nausea meds or the chemotherapy pills themselves at night.  But since I’ve worked that into my routine, I still make sure I have the right pills before I go to bed and often feel like something’s missing.  It’s ridiculous, but inertia is a pretty strong force.  I think I should also feel ridiculous for not making every minute as important as it should be.

My grandmother passed away a couple weeks ago, and even though I’m going to make this about me for a second, I was happy to meet people who said, “I haven’t met you before, but I’ve been praying for you every night.”  I get that from friends of friends all the time, and it’s nice to know that people have a much higher opinion of me than I oftentimes do of myself.

Thank you all for reading again, and please know that "no news has actually been good news.''

In summary, since I last wrote a post:
1. Had a fabulous surprise 1 year since diagnosis celebration of life is sweet party.  Thank you for all who came out and were a part of that.  Really meant a lot to me and my family.  Your continued support has been tremendous
2. Had another stable MRI in September.
3. Finished last round of chemotherapy for this year in September.
4. Participated again this year in the Head for the Cure 5K walk

Specific Prayer Requests:

1. That we remember to thank God for all the things we do have and to live in the moment.
2. Continued prayers that we have the support and help of others along this journey as we continue every 2 months with MRIs to assess William's brain.
3. Prayers that I continue to experience God's healing power and that my brain continues to show no tumor re-growth, especially on the next scan that will be November 18 with results on Novemeber 19.  (MRIs will continue every 2 months).
4. Prayers of thanksgiving that my last MRI showed change in a positive direction and that Eda and I are able to rest easier knowing I am experiencing healing.
5. Prayers of thanksgiving that William has completed his first full year of radiation concurrent with chemotherapy and another 12 months of chemotherapy.   

   

   Life is sweet party!

   
   

   

   Friends who came out to William's 1 year celebration

   
   

   

   Thank you all for being there!

   
   

   

   William and Jeff - fellow GBM survivor

   
   

   

   More of our plethora of treats we had that day!

   
   

   

   We love our Team William banner!

   
   

   

   William and his mother

   
   

   

   Charlotte and I - Charlotte organized all of this!  William and I are so blessed by her support it has been more than unwavering!  We love you Charlotte!

   
   

   

   William surprised...he had no idea. I had him blindfolded.

   
   

   

   This happened since last post - Abigail started Kindergarten!

   
   

   

   Abigail and mommy selfie on first day of school!

   
   

   

   Still super heros fighting cancer...

   
   

   

   The batgirl crew with batman himself!

   
   

   

   Just love this one of Audrey.

   
   

   

   Part of our young survivor group

   
   

   

   Head for the cure 5K walk.  Raising money for head for the cure.  Team William walkers!  William received keeping the faith award.

   
   

   

   William and the family with his MD - Dr. Mark Gilbert

   
   

   

   Cute one of the girls - Abigail 5.5 and Audrey 21 months

    

    

    

    

    

   Thank you all for your continued love and support it means a lot.  Will try to continue to update as able.  Will definitely post something after the next MRI and results.  I am so blessed.  Please do not stop the prayers. We will continue to fight and the journey is not over! 

Come out and Join us

The last month has resulted in another chemotherapy done... YAHOO!!!! ONLY 3-4 more rounds if we stay the course (which we will :)).  In addition, we went on a family trip to see my sister in Hershey, Pennsylvania and used our plane tickets from last year that we were unable to use due to William needing radiation as soon as he could after surgery.  We had a wonderful time and felt it was so good for both of us to get a chance to be away from the stress we have had on our shoulders this entire last year and a chance to just spend some fun time with each other and the girls.  William had to come back early because he had to do his chemotherapy, so his trip was a little shorter than ours.  

William's next MRI is July 8, 2014 in the evening and we will get the results on July 9, 2014 so please say a few prayers for him.  He will then start another round of chemo the following week.  Thank you so much for all of your continued rallying and support along the way.... and that brings me to the next agenda (see invite below)

William is getting ready to celebrate his 1st anniversary as a brain cancer survivor, which is a sweet, sweet thing. Come out and help us celebrate his valiant fight and all of life's sweet moments at our first annual Team William- LIFE IS SWEET SURPRISE CELEBRATION!  His surgery was on July 26, 2013 last year so this celebration is a year to the day from the beginning of his battle with Glioblastoma.

Please remember this is a surprise so no mention of it.  I am keeping him off of the blog and facebook until this party happens so you all please do not say anything to him if you can keep a secret.  

Please come out if you can we would like to celebrate this milestone!!! It is a surprise to him and are hoping to make it a big one.  We appreciate all your support this year and onward as we continue this journey.... Chemo is still ongoing for now but this is a huge deal for us and would like to share this moment with those who have kept us going through love, prayers, and participation....hope to see many of you there 

 Let's show him support in numbers and remind him we are all still here!!! Hope to see many of you there on July 26, 2014.  Invite below:

 

Smiles and relief yet again...... we hope they continue

(From William)...

I started thinking about what to write for this blog post, and one thing became immediately clear to me.  I would be the worst comedian since the invention of the art form.  I know the punchline.  I know where the story is going.  And I can’t WAIT to get there.  I have no sense of timing, and I’m just not very funny to begin with.  It might entertain people to watch me attempt it just for the disaster it would be.  Anyone with kids would enjoy the silence of the room, regardless of how uncomfortable it would be.

See, that entire first paragraph is designed solely to procrastinate.  I know I have good news, and I need to force myself to engage you somehow other than jumping to the end.  The antagonist is obvious, but the actions behind the scenes are not.  And if I were a more gifted writer, I could develop some sort of suspense, since that’s what I’ve been experiencing for the past two months.  But I have a dearth of bad news, and I haven’t even wasted that much energy since the last MRI worrying.

The sequence of events at the doctor’s appointment is usually the same.  First, I sign in.  Then I wait.  Then the nurse comes to see me and asks a series of questions which, from what I can tell, is designed to tell the doctor what changed since my last appointment.  After she leaves, I wait again.  Then the PA or a fellow comes in to do some diagnostic tests.  “Close your eyes.  Touch your nose with your left hand.  Push against my hand.”  That kind of thing.  Then I wait again until the doctor comes in to tell me what the MRI showed and let us look at the actual images.

This time, we got two bonuses with our appointment.  First of all, the PA told me the MRI was stable, so I had ten fewer minutes of concern.  Secondly, she told me that since things were going so well, I don’t even need to come to the office in between the MRIs.  So instead of a full-blown appointment, all I need is a blood test.  If blood work comes back with a problem of how my body is handling chemo, I will need to return for a visit, if not then will start next round of chemo.  I would still do whatever it takes to fight the disease, but having the physician tell me I don’t even need as much supervision really makes me believe things are going well.

That was the majority of the day.  When the doctor came in the room a few minutes later, he walked in and said, “Well, the MRI is stable.”  Then he sat down, looked at us, and shrugged his shoulders as if to say, “Any questions?”  I guess nothing more than that was necessary.

So that puts me back on chemotherapy this week.  I’ll be done with that Sunday evening, then we’ll wait two months for the next scan.  However, chemo will continue in between with another round in June.   I have my next MRI around July 8 with results the following day.  

I usually come home to some sort of encouraging surprise, and this time was no exception.  I was encouraged to go into diabetic shock, unfortunately.  I exited the garage to a trail of Smarties and Starbursts, then came into the house to find peppermint patties, which I love, of course.  I'm thinking of going by Hansel in the future.  But I was very impressed by the posters on the floor of my living room.  My team is going to have trouble topping this one from a creativity standpoint.

I feel so fortunate and blessed to have this much love and rallying behind me.  It really does help me to keep going.  Can't believe it will be one year shortly after the next MRI since I was diagnosed.  Really want to say thank you to all those who have been there for our family and supported us this entire year.  Thanks for all the help along the way.  Chemo will continue until October and MRIs for another 18 months every 2 months so please continue to follow our journey.   It means so much to us!

Specific Prayer Requests (many similar to last month as they remain pertinent):

1. That we remember to continue to live in the moment and enjoy each other and be thankful for each new day.
2. Continued prayers that we have the support and help of others along this journey
3. Prayers that I continue to experience God's healing power and that my brain continues to show no tumor re-growth
4. Prayers of thanksgiving that my last MRI showed change in a positive direction and that Eda and I are able to rest easier knowing I am experiencing healing.
5. For the remainder of this round of chemo that I tolerate it and can muster through with little side effects and for the next round that will start in June.
   

   

   Family in Galveston

   
   

   
   

   

   William hanging with his girls

   
   

   

   love this pic of daddy and Abigail swimming

   
   

   
   

   

   Audrey 17 months

   
   

   
   
   

   

   All the Team William Candy Bar posters and sign!

   
   

   
   

   

   Team William made up of Hershey and Crunch bars!

   
   

   

   Cancer Ribbon made out of Hershey Kisses!

   
   

   
   

   

   Trail of mints...

   
   

   

   Poster 1 of 4

   
   

   

   Poster #2 of 4

   
   

   

   Poster #3 of 4

   
   

   

   Poster #4 of 4

   
   

   
   

   
   

   
   

   

   Eda and Audrey

   
   

   

   Family picture at William's brother's wedding

   
   

   

   Love this pic of the back of the girls - Sisters!

   
   

   

   Sisters at William's brothers wedding - Abigail was a flower girl

   
   
   
   

   

   Fiesta Texas - Audrey on Ferris wheel

   
   

   

   Abigail and Eda on tea cup ride

   
   

   

   William and Audrey at Greek Festival

   
   
   
   
   

Prayers answered and relief experienced for now....

What a relief.  I’ll just start it out that way, like an episode of your favorite serial drama with the end at the beginning.  If you’re at all like me, you’ll like the ending.

Let’s rewind to the post just below this one for a minute.  When last we left you, there was an area of concern.  There was a new spot on the MRI that we had never seen, and even though the doctor told us at this stage that he wasn't worried too much yet, that he was only telling us because it was his job to be diligent, we worried.  I’ll just defend myself by saying this.  If there’s something growing in your head, and you don’t know what it is, you worry.

So Sunday comes along, March 23, and I start off to the medical center for the MRI, which was a month earlier than anticipated.  I had spent a month dealing with concern about it, so I didn't have a whole lot more worry to expend.  When I first began treatment, I told everyone that I would at least make it through the first year without any recurrence.  I'm happy to say that is still the case.

I don't know what the spot is.  It could be tumor cells, or it could be scar tissue, or it could be something generated from radiation.  To be honest, at this point, I don't really care.  It's either staying the same or shrinking, and tumors that don't grow don't kill you.  My uneducated view was that whatever it is had dissipated a bit.  It looked less solid than last time, and it wasn't as well defined.  So two months from now I'll get another look at it, and we'll pray things are going in the same direction.

It was a special surprise to come to the house and see so many people had become creative to show support through the last Team William project.  There was silliness, serious support, happiness, and many other emotions in people's pictures.  There were a few in particular that were very inventive, and it meant a lot to me that people would take time and energy to use their energy that way.  I got people's best, and it's hard to think I deserve it.

I have just finished round 6 of chemotherapy and although it wasn't easy and I was tired and nauseous I made it through.  Thanks for all of your continued love and support for me and my family during this journey.  You have no idea how much it means to have so many people who pray, send cards, send texts, check in on us, and rally behind us.  Your unwavering support is helping me continue to be successful in this journey.  Please do not stop.  

I will try to be more diligent in updating this blog quicker after the results.  I have had a lot on my shoulders and chemo wiped me this last time.  Eda usually is diligent and take care of most of this, but life has happened and her private therapy business is under an audit.  So to say she is busy and overwhelmed is an understatement.  We will work better to keep you all more informed, just please stay behind us.  We can't do this without you!

Lastly, thank you for all those who came out and supported my family and brain tumor research at the Run for the Rose.  We had a lot of fun and hope to make it a yearly event to help find a cure for my tumor others suffering with brain tumors.  

I continue to work on the playhouse for the girls and I will keep you posted when it is finished.

Specific Prayer Requests:

1. We continue to live in the moment and enjoy the time we have with each other, not worrying about what the future may/may not bring
2. Prayers that we continue to have the support and help of others along this journey
3. Prayers that I continue to experience God's healing power and that my brain continues to show no tumor re-growth
4. Prayers of thanksgiving that my last MRI showed change in a positive direction and that Eda and I are able to rest easier knowing I am experiencing healing.
5. Prayers of thanksgiving to those who have continued to be here for us and participate in the surprises for me along the way.
6. For the next round of chemo that will start in late April.

Team William Project - pictures with love and encouraging words!

William looking at each picture!  Thanks for all those who participated!  Huge Success!

William and his girls!

Audrey getting ready to "walk" the Run for the Rose for daddy!

Abigail, Addison, and Caroline Eccles sporting Team William attire at the walk while sitting in the "circle of Willis" of a huge blow up brain!

William and I after the walk!

William and his friend Jeff who also has a brain tumor like William.  Jeff's family has been a huge help to our family as we learn about this tumor.  Amazing new friend to William!

Abigail at Team William walk supporting her gray cancer ribbon for her Daddy!

Abigail and Daddy!

They walked over 2 miles before requesting to be in a stroller.  So proud of them!

Family after Run for the Rose!

Thanks to all who walked with us!  You are awesome!

William and I

Passed out on her daddy!