Friday, September 28, 2012

Just like daddy :-)

When I grow up, I want to be just like daddy :-))

Oncologist visit

Hi all, my visit with the oncologist yesterday went ok. She STILL hasn't received back the results of the stain that the University of Virginia is doing, to determine what sub-speciality my tumor is (hence the delay in chemo and radiation). She explained that she is waiting on results from the Mayo clinic. She is very compassionate and a believer (she told us so yesterday) and was very apologetic about the delay. I think the hardest part about yesterday's visit, was that she told me that although physically I can have more children, that logistically it would be impossible (with MRI scans every 2 months.) I believe in life and the reality is that if I had to choose between treatment and my unborn baby, I would choose to protect the baby. I thought to myself, as I held Zachary in my arms "nothing is impossible with God". My oncologist said that as soon as the test results came in (hopefully sometime next week) that she would let me know and begin treatment. God is working on me with regards to my patience!

On a more positive note, Zev, Zachary and I are heading to DC for the weekend! I am excited to visit the museums and walk around the nation's capital! I praised God this morning for my healthy boy and my amazing husband. GOD IS GOOD!!!!

"I pray that out of his glorious riches he may strengthen you with power through his Spirit in your inner being, so that Christ may dwell in your hearts through faith." Ephesians 3: 16-17.

Speaking of Zachary, he is such a blessing. Zev and I are so blessed to have him in our lives. Zev bought him a
Camouflage onesie before he was even born and which I am going to put him in this afternoon. I will take pics and post soon!

Have a good day!

FIFi xo

Wednesday, September 26, 2012

Waiting....

I am not the most patient person in the world. Nor the most faithful. These past two months have really tested my faith. Thankfully, I have grown closer to God and to my husband and family and friends. I have said numerous times, I can't imagine going through this trial without God. Your faith is REALLY tested when you truly face your own mortality. I am glad that I am going to Heaven and that I will meet my Lord. I still don't want to die. What is interesting, is that I have asked God for a few more years on earth, so I can be with Zachary as he grows up and enjoy time with my husband some more. I love my Z men so much!!! Zev and Zachary. Who knew I would be so blessed!???

So the reason why I haven't posted about my brain cancer lately is because I am still waiting to hear what the treatment will be. I am praying to hear a PLAN when we meet with the local oncologist this Thursday (ie tomorrow). I am not the most patient person in the world (I know, I already mentioned that!) but honestly, this recent cancer experience has made me more patient. I take the time to smell the roses and appreciate the simple things in life. Time spent with people is such a special gift.

So, in a nutshell, we are waiting to hear back as to what the chemo and radiation treatment will be. I think I mentioned this in a previous post, but the reason for the delay is that I have a rare tumor. So basically, because my tumor is so rare, no long term studies have been done to know what chemo drug works best. There is a neuro-oncology expert at UVA and one at Johns Hopkins that are doing more testing on the sample taken from my brain surgery, to narrow down the options for chemo drugs. Apparently (and I am learning something new about brain cancer every day) but there are many types of brain cancer and some types respond better to certain chemo drugs than others. Being "rare" or unique is good in most cases; except this one. Or at least as far as I see it. Zev has become quite the optimist lately and reminds me that having a rare tumor means that more people are looking at it, which is a good thing. He is such a good man.

As a Christian, I am called to TRUST in The Lord my God with all my heart. He will direct my path. Yesterday I had an MRI. I talked with the MRI tech about my brain surgery and she was fascinated with the fact that nowadays, certain locations around America can do an Intra-operative MRI. I tried explaining to her how it worked and then suggested that she look it up on the Internet. I still can't believe I had an awake craniotomy a little over a month ago.

The enemy likes to get in my head and play games. When he does this, I pray to God for strength and the enemy flees. Praying for faith is another thing. I prayed for faith and for God to increase my faith as I lay in the MRI machine yesterday. My faith was as small as a mustard seed yesterday though. Do I believe in miracles? Yes. Do I believe that God will deliver me from this cancer? Honestly, I don't know. I believe the God is capable of doing so, but as to whether His will is to deliver me from this illness is another question. That's a hard concept, a bitter pill to swallow.

In addition to Jesus Calling, I am also doing (like every third or fourth day!) a devotional called Prayers for Emotional Wholeness by Stormie Ormatian. I feel like a broken record saying this, but today's devotional applies to my current situation PERFECTLY:

Lord, I know you have called those of a us who are your sons and daughters to have faith in You and in Your ability to keep us and guide us. Help me to make faith a daily walk. I trust You to do whatever is necessary to bring me to complete wholeness.

"I am not ashamed of the gospel of Christ, for it is the power of God to salvation for everyone who believes...for in it the righteousness of God is revealed from faith to faith; as it is written, "The just shall live by faith."
Romans 1:16-17.

God is working on me. I pray that His will be done in my life. I pray that I can glorify Him in some way.

Thanks for your prayers and support!

Fiona :-)

Saturday, September 22, 2012

Zachary's first solids!!

After Zachary started watching us eat this week, we decided to up his solid food start date to today (we were originally going to wait until his 6 month birthday, which is on October 9th). Zev and I were probably more excited than Zachary! Or we were all equally as excited :-))

Enjoy the video!

Friday, September 21, 2012

Our little pumpkin

I'm thinking of taking him to a pumpkin patch to take some pictures......Zev says he is my doll :-))) I am making the most of it while Zachary lets me!

Hope you are all having a great week. Thank you for continuing to pray; we still haven't heard back from the doctors regarding my treatment. I have a peace about it all though :-)

I keep praying my life verse, which seems spot on appropriate now:

"Trust in the LORD with all your heart and lean not on your own understanding. In all your ways acknowledge Him, and He shall make your paths straight." Proverbs 3: 5-6

Love, Fiona :-))

Friday, September 14, 2012

My brain cancer diagnosis story

DR. Q ASKED ME TO WRITE A BLOG POST FOR HIS BLOG OF MY "STORY". BELOW IS WHAT I WROTE.....

Monday, July 16th started out like any normal Monday. I made Zev his smoothie and coffee. Made sure I packed a note into his lunch box and then I headed off to Baby Garten, a local library program for mothers and their babies, where we sing songs and do a craft. It was a fun morning! I never expected to collapse in my driveway at noon on that hot day. But God is good and I have praised His name, thanking Him that I collapsed in the driveway and was found by a neighbor, rather than collapsing at the wheel while driving.....

I was initially told, after the ER doctor ran some MRI and CT scans, that I had an inoperable brain tumor. World Health Organization (WHO) Grade 3 Anaplastic Astrocytoma Glioma. Grade 4 is the worst type of cancer. This was all within the time span of about a a week and a half. You can imagine my heart. Here I was, a 32 year old mother of a sweet 4 month old boy, wife of an Air Force officer, being told that she has an inoperable brain tumor and that a "good goal" would be to "survive the next 12 months."

I refused to accept this conclusion; this death sentence really! It seemed so hopeless at the time, and yet I saw beauty in the simple things in life. I know this sounds crazy, but our little family is actually grateful for the gift of time that the diagnosis of brain cancer has given us. Gratefulness. Such a special word. So much meaning to it.

We sought a second opinion that following week from the University of Virginia's Dr. Schiff, who was a neuro-oncologist but recommended that surgery was an option! We couldn't believe our ears! We met that afternoon with neurosurgeon Dr. Schaffrey who also agreed with Dr. Schiff. Our local oncologist had highly recommended these doctors so we knew we were in good hands.

We decided to travel to Baltimore a few days later to meet with Dr. Quinones (or Dr. Q as he is fondly known) and seek that third opinion. I was honestly ready to go with Dr. Schaffrey. He was ready to operate on August 14th and seemed confident in his abilities as a neurosurgeon (which you kind of want when someone is operating on your brain!)

So we met with Dr. Q on August 9th. I remember this date because our son turned 4 months old on this day. Dr. Q seemed nice and his team were efficient. I was honestly overwhelmed by how big Johns Hopkins University Hospital was. I come from Sydney, Australia and I had never seen so many medical staff: doctors, nurses, support staff, walking around and talking. Thankfully, the feelings of being overwhelmed have been overcome with feelings of gratitude for all that Johns Hopkins and Dr. Q's team has done for us. We are so grateful.

Dr. Q performed an awake craniotomy on me on August 16th; a month exactly after my collapse. His team were outstanding from day one. From his secretary to his own abilities as a neurosurgeon, he really is an amazing man with an incredible story. He reminded me of my dad, who comes from Uruguay. Maybe that's why I went with him. Maybe it's because he spoke Spanish like me and he spent time and effort to preserve my language skills. He ordered a Functional MRI with Dr. Pillai a week before the surgery, which was fascinating, if it wasn't me having brain surgery! But you know, I never felt hopeless with Dr. Q. On the contrary, I felt a sense of peace and calm and hope.

Zev and I went to so many doctors appointments and met with so many doctors and medical staff. My parents from Australia came to visit us, which worked out well actually and they were a help with our baby boy. The circumstances under which they visited were not ideal, but it was nice to have the extra help and to catch up.

I firmly believe in the power of prayer and of Jesus Christ in my life. People I don't even know have prayed for me. Around the world even! One of the many good things about the military life is that we get to live in cool places around the world. We just came back to the States last August from Germany, where we did a 3 year tour. We traveled so much there! Of course, Zev and I met in Australia, where he was stationed as an exchange officer and I was a young lieutenant (the term is actually "Flying Officer") in the Australian Air Force. We met at a masquerade ball, and the rest as they say, is history. Zev has been amazing during this entire experience. Truly amazing. They say you can test a man's mettle during the tough times and well these have been tough times. But we have grown closer in ways that can only be attributed to God and His glory. God is so good!

So here we are, about a month post surgery. About two weeks post surgery, we traveled to Baltimore for Dr. Q's staff to take out my staples. I was actually worried that it would hurt, but of course it didn't! So many people are in awe that I underwent an awake craniotomy, but I tell them that I am not a hero or anyone special. And besides, God was there with me during the entire procedure.

Apparently, during my awake craniotomy I spoke of my three loves: Zev, Zachary and Venice. Funny that I have never taken a gondola ride in Venice. You know what, now I can take Zev and Zachary to Venice and we can take that gondola ride together. Life is so precious. Enjoy each day and give thanks while you can. I give thanks every day and take pleasure in the simple things in life. Like sitting in the sun with our son.

We are planning a trip back to Australia in the winter (summer in Australia!!) We can't wait to see everyone and introduce Zachary to the family. We are still waiting to hear what the course of action will be regarding chemotherapy and radiation therapy, but I feel confident in the future. My family and I are so very grateful that Dr. Q was able to take out 60% of the entire tumor.

I say that two months ago, I had no idea that I had brain cancer. Thanks to God and many good doctors, including Dr. Q, I have hope now for the future. I want to make a difference and leave my mark on this world; maybe being part of a cure for brain cancer is part of that plan!

Thursday, September 13, 2012

Infant massage!!!

It was awesome to be back at infant massage today. Karen, the instructor had heard of my brain cancer diagnosis and had sent me a sweet card saying that she would come to my house to give Zachary infant massage!!! So sweet.

It was awesome to catch up with The Girls: Natalie and Megan. I love these girls so much; we were pregnant together and our boys were born within 11 days of each other. Natalie and I had the same doctor and we all gave birth in the same hospital. So cool. We are also military wives and so share many similar experiences.

We do infant massage together and today was the first time in months that I had been. It was so good to be back. Working out the logistics was fine too. Megan was kind enough to pick me up at home and we both laughed as we fought with the baby car seat base and tried to navigate home!! And with an in car navigation system and Google maps!! Yes, I know it's meant to be easy. :-)))

Anyway it was a good day. First day in a while that Zachary and I have had some good mummy and baby time!

Enjoy the pictures!

Love Fiona xoxo

Tuesday, September 11, 2012

Status update!

Hi friends! I thought I would give you a status update on my treatment, since so many of you have been so kind in praying for me!!! I am seriously overwhelmed by the people praying for me around the world!! Thank you!

So, I haven't begun radiation or chemo yet because I am an "unusual" case, meaning that I don't neatly fit into the categories for brain tumors that are currently known. I wish I was stock standard/ cut and dry, but Zev pointed out that an unusual case means that more people are looking at it.

We saw Dr. Schiff at the University of Virginia today and we are currently at Johns Hopkins in Baltimore, to meet with Dr. Grossman tomorrow. I must admit, and I don't want to offend my doctor friends! but I am over doctor visits. I appreciate and respect their intelligence, but the whole clinical scene, the sitting and waiting and waiting for more test results makes me kind of anxious.

Dr. Schiff wants to do more tests on the brain tissue sample from my brain surgery. He is very nice and very intelligent; I just want to get started with chemo and radiation, but I understand that he needs to do more testing in order to make sure that the medicines that they are giving me are the right ones for my type of tumor. And they said that law was hard! Hahaha :-)

Please pray for me. I have tried to keep my chin up, but this has been a hard week in terms of emotions. Ups and downs. Zev has been such a rock; so strong through all this. Pray for him too. Thank you to everyone that has supported us, especially the grandparents!!! We love you so much!

On that note, I have my Bible in front of me and wanted to share a verse that really spoke to me this week:

"In the course of my life He broke my strength; He cut short my days. So I said: Do not take me away, O my God, in the midst of my days; your years go on through all generations....But you remain the same, and your years will never end." Psalm 102:24.

So there you have it! I am smiling now :-)) Zev and I went to PF Changs for dinner. I am so grateful for the opportunity to do that and to have such wonderful medical care.

Have a great week!

FIFi xoxo

Sunday, September 09, 2012

Happy 5 month birthday Zachary!!!

Our boy is 5 months old today! As Zev jokingly said today, it seems like just a month ago he was 4 months old! Get it?

We are so honored to be your parents, Zachary.

Here's what you are up to this month:

- You are wearing size 3 diapers
- You are rolling over from your back to your belly but not back over again. Well not that I have seen anyways but your daddy says that he's seen you roll from your belly to your back. Pity you can't show mummy that trick at 3am when you cry and she comes to your rescue and rights you on your back and puts your pacifier back in. Bless your heart, you are cute even when you cry at night.
- We think you're getting teeth but we don't see or feel any right now. You are drooling a lot right now though.
- You are on a different formula. We had you on Gerber Good Start but you didn't seem to like it, so we switched to Enfamil. That seems to be working better for now.
- You LOVE the German teddy that Gena and Hans bought you! Hallo, wie gehts? The fact that you like languages makes mummy VERY HAPPY :))
- We think you are a trooper. So much has gone on in your little life these past 6 weeks and we look on with wonder at how well you are handling all the new people in your life, and the new changes.
- We love you SO MUCH. I tell you I love you in English, Spanish and German every day. Just so you know you are LOVED.

Happy 5 month birthday, son.

Love mum and dad.

Friday, September 07, 2012

Military Spouses Coffee

Yesterday I was able to go to the kick-off coffee on base for the military wives club. I remember the first coffee I went to last year; it's amazing that a year has past!

Zachary turns 5 months this Sunday!!! And yes you can expect an update :-)))

My AWESOME friend from Louisiana, Lindsey, sent me a fun package full of sweets! I loved it when I received it today :-))) Thank you, Lindsey!!! :-)))

My brother and his lovely wife Gabby and their 3 kids also sent me a gorgeous bouquet of flowers. The bouquet included PINK STARGAZER LILIES!!!!!!! My favorite flower! I know I have often said that in my home (that pink stargazer lilies are my favorite) but how did they know? Interesting :-)) Mum pointed out that the bouquet looked just like Gabby's wedding bouquet (which had the lilies plus roses). I love it guys. Thank you so much.

So that has been my week! I am leaving you with some fun pics, including one of Zachary and his future wife, Miss Eliana Grace. I am a firm believer in arranged marriages :-)) Grace would be PERFECT for Zachary. I am good friends with her sweet mum, Ellen, who is also a military wife. Hope he feels the same way too!

I have an awesome, generous husband. I don't know that I will be able to repay him all the kindness he has shown me these past few weeks. It will be only 2 months since my collapse, on September 16th! Isn't that crazy!? To think that 2 months ago, I had no idea that I had brain cancer, and 2 months later, I have had an awake craniotomy and have a big scar to prove it! I've had lots of scans and tests and grown CLOSER to family members and people in my church and community. God is so good. He is so good. If you are reading this and have supported me in ANY way, whether it is sending an encouraging note, making a meal for me, coming to visit me, bringing me breakfast (thanks Ginny!!), bringing me and mailing me gifts like books (thanks Liz!), scarves, chocolates.....I can never thank you all enough. It all lifts my spirits and encourages me SO much. I am so grateful. I hope to pass it on someday :-)

The Joy of the LORD is my strength. Nehemiah 8:10.

Monday, September 03, 2012

Zachary during his tummy time!

Our Zachary is so cute! I videoed him during his tummy time this past Friday, and look at him go! So cute. Zev thinks he's cute too :-) Don't all parents think their children are the cutest?


Here is the devotional for today. I thought it was appropriate, as I do every day!

Let the dew of My Presence refresh your mind and heart. So many, many things vie for your attention in this complex world of instant communication. The world has changed enormously since I first gave the command to be still and know that I am God. However, this timeless truth is essential for the well-being of your soul. As dew refreshes grass and flowers during the stillness of the night, so My Presence revitalizes you as you sit quietly with Me.

A refreshed, revitalized mind is able to sort out what is important and what is not. In its natural condition, your mind easily gets stuck on trivial matters. Like the spinning wheels of a car trapped in mud, the cogs of your brain spin impotently when you focus on a trivial thing. As soon as you start communicating with Me about the matter, your thoughts gain traction and you can move on to more important things. Communicate with Me continually, and I will put My thoughts into your mind.

Isn't that beautiful!?

Love, Fiona