Finally!

I feel like we are long overdue for some good news. Well, we are headed to City of Hope Thursday to sign papers. I don't believe he'll get any tests done, but any progress, at this point, is a step in the right direction. His appointment is at 10:40, so traffic shouldn't be too bad. (I would walk there if it came down to it.) Bill's general practitioner (Dr. Staz) called again today to apologize for all of the delays. He feels terrible and is actually checking into a second referral to UCLA since the City of Hope is not exactly jumping at the bit for him to start treatment. Although we are avid USC fans, I would do cartwheels to get him into UCLA (an amazing medical research center), and get this show on the road!! I might even consider buying a UCLA sweatshirt... well, maybe not yet, I don't want to get ahead of myself. ;)

The Unknown

The frustration level has officially reached its peak. It is at a level of which I never thought possible. Bill called the City of Hope today and spoke to the nurse. I don't think he kept his anger a secret when he spoke to her inquiring a real answer regarding the start of treatment. She finally admitted that the mistake in the write-up of the trial would have to be state approved, only to then be seen by the hospital's ethics board. He asked for a straight answer about treatment starting this week or possibly next week, and she stated that she was unsure when it would begin. UGH! We are debating seeking treatment with the first oncologist (in Irvine) just to get started on something, as long as it doesn't lessen his chances to participate in the trial. The waiting game is torturous!!

Our Weekend

There is something about ocean air that does wonders for your mind. It is so nice to just get away and relax. It was about 70 degrees yesterday and we never saw the sun. It doesn't matter what the weather is, it's always beautiful on the water. We actually had to go buy sweatshirts (I packed a little too quickly) since it is so cold at night. Bill thinks it was a part of my ploy to go to the outlets, but I promise that was not my plan... although I would sacrifice and go for him if he really wanted to. *wink, wink*

Still no word on our next appointment. They are supposed to call and reschedule, but I think Bill will probably have to call tomorrow. I am hoping we can go in this Thursday and sign papers. Bill's general practioner called on Thursday to check on him and explained why it was cancelled... at least someone explained it! It turns out that there is a mistake in the write up of the trial and they need to correct it before he signs the paperwork. Hopefully the board at the City of Hope will get it taken care of Tuesday, and we can get this party started!

Beach Bound

Thank you all for the kind words of encouragement. I am in constant battle with myself about whether or not I should be so honest about our day to day ups and downs. I just can't pretend they don't exist, and as I have said before, this is my therapy. I have serious issues with the "pity" idea and the very last thing I want is for everyone to feel sorry for us. So please know that I am not trying to be a martyr, it's just that some days I have to be honest with myself about this crisis... which transfers onto the blog.

We are off to Carlsbad this weekend to stay and Norm and Rose's condo. They selflessly offered it to us when we inquired about the next available weekend. Needless to say, we desperately need some time away. We are so excited!!

Bad News

I wish I had good news... the appointment tomorrow at the City of Hope was cancelled this evening. They said the new drugs for the study were not approved yet and the paperwork is not done for necessary tests to be run. The disappointment is astounding and the heartache is even worse. It is not easy to stay positive and upbeat when treatment hasn't started and appointments are constantly cancelled and rescheduled. It is even harder to maintain strength when you see the one you love with all your soul in extreme pain, both physically and mentally. My heart hurts tonight...

HOPE...

We have officially survived (and ended) Tyler's birthday week celebration. You know it's bad when I walk in the door from work and he asks, "Did you bring another present home for me?" The kids in my class and past parents at my school were beyond generous and bought him an insane amount of gifts. I'm sure you can all imagine how neglected he is... poor baby. ;)

We are eagerly awaiting our appointment on Thursday at the City of Hope. Bill is still a little unsure as to what is going to happen, but just going there has to get us one step closer to treatment. *fingers crossed* In a perfect world we will sign papers, get all prerequisite tests complete, and he'll be ready to start treatment the following Monday. He has had a few days of feeling "it," which is very achy and uncomfortable. Thankfully they finally gave him some medications to help the ease the pain, which is also helping him to sleep. He learned the hard way about taking a pain killer an hour before Tyler was supposed to wake up. Once my mom came and got him, he was free to sleep at his leisure... which is just what the doctor ordered.

Terrible Twos?

Everyone refers to the terrible twos as being a trying time in a toddler's (and parent's) life. We thought we were off the hook when Tyler breezed through the twos without a hitch. I can almost count on one hand how many times he has had a colossal temper tantrum. Although today we evaded a huge tantrum, he definitely showed signs of the "threatening threes" as we are so fondly calling them. Today I heard a countless "No," "I don't want to..." "That's mine..." Well, you get the point. We are so very fortunate to have a child who really is happy all the time. He's not usually moody or even cranky very often. Holy cow, today was a different day! It seems like everything was a battle, and I am exhausted. It usually takes all of about 3 minutes to put him to bed and tonight was struggle just to get his pajamas on... Although we are pretty sure we are going to keep him, today I would have traded him for a nickle.

I know I will never get my answer but I can't help wondering about the root of Tyler's attitude today. I'd be crazy to think that he doesn't sense something going on here and feel the stress in our lives. Kids are far smarter than we give them credit for. Although I try to keep his life as "normal" as possible, the reality is that we are in a crisis. It's a toss up between being 3, feeling the stress, or maybe a little of both... probably the latter.

Next Appointment at HOPE

When we went to City of Hope on Monday, and they told us of this trial we were given pages and pages of paperwork to look over. Given that this was our only option of treatment, I was ready to stay and sign right then and there, despite the confused look the doctor gave me. Bill wanted to go home and read the paperwork before he signed on the dotted line. I couldn't argue with him, since he IS the actual patient, and since it's his body I guess he should have a say. On the way home I read the entire "novel" about the trial and even read some pieces aloud so Bill could get the gist of it. The very next day Bill called back and to make the next appointment. Surprisingly, he got an appointment for Thursday (today), but it was cancelled. (Nothing shocks us anymore.) They told him that they are adding a new drug to the trial and the hospital's IRB Board needs to approve it, but they only meet on Tuesdays. Go figure... So now, his paper signing, blood work, and possible CT scan are next Thursday, September 25th. The doctor only does clinics on Mondays and Thursdays, so I'm betting that those are his treatment days. I'm thinking of putting a sign-up on the front door for drivers to and from the hospital - just kidding, you will have to fight me (and Joe and Ann) for it!

Credit Where Credit is Due

I will be the first to admit that the blog idea was not my own, but one I borrowed from a relative. My dad's cousin (Chuck Shin, who commented on the previous post) is the pioneer of blogs and quite frankly, my "blogging" idol. He started a blog on a website called Care Pages on his journey with his son, Robbie. Robbie was an amazing young man who was born with a heart defect and got a transplant as a baby. I can remember seeing his baby picture on the news when Chuck was an Orange County Sheriff while they were looking/waiting for a new heart. I know I will mix up the details, so I am going to jump way ahead. This amazing boy lost his battle with cancer (after a 2nd successful heart transplant, I believe) at the young age of 15. Chuck kept a Care Pages blog that was updated daily with Robbie's prognosis, thoughts, feelings, and general information about their lives and his illness. I honestly felt like I was sitting in the same room when I read the posts. They were detailed, funny, and so very REAL. My apologies go out to Chuck for comparing my blog to his, because his was a true work of art. His words were articulate, touching, and motivational. I would get to work every morning and immediately check the blog to read about Robbie's night. Some mornings I'd sit at my computer and cry, and other times I'd laugh out loud at his witty and amusing stories. Again, my apologies to Chuck for the weak comparison, because I am no where near his blogging abilities, but I feel it necessary to give credit where credit is due. I don't know if anyone has ever dedicated a blog to someone, but Robbie, if you are listening, this one is for you! Thank you for the inspiration!

Tyler's Birthday

Tyler picked out special Popsicles to take to school tomorrow, even though he keeps saying he doesn't want his birthday. Obviously, he doesn't remember the perks of having one.

I still can't believe our baby turns 3 tomorrow! It brings tears to my eyes just thinking about this day 3 years ago. I can honestly say that was the best day of my entire life. (Our wedding day holds a close 2nd, though.) I truly believe you can't fully comprehend the love you have for a child, until you have one of your own. It is a type of adoration that cannot be described or stated with mere words. Love is a verb, not a noun - it is an action, not an idea. It doesn't matter how old or young your children are, it is a love that lasts forever. When I really allow myself to think about our current situation, my heart hurts for what Joe and Ann are going through. Regardless of age, a child is always your baby.

Our Appointment

Well, we are home from our adventure. Hang onto your hat... here it goes!

We arrived early (no big shock there) and went through about an hour of check-in with some of the nicest people we have encountered on this journey. I know they are trained to deal with people with serious issues, but they know how to treat the "customer".

THE PLAN:
The City of Hope, gave us just that - HOPE. They have a clinical trial that he will start within the next 2 weeks. First, he needs to have some blood work done and another CT scan to form a baseline. The trial is not chemotherapy, but other strong drugs that are often used to treat kidney cancer. There are 2 arms to the trial and it is a coin toss which route he will take. One has an oral drug and an IV drug, and the other has 2 oral drugs. Although the cancer is not curable, it is treatable by way of this trial. Right now we are praying that this trial not only shrinks the tumor, but keeps anything else at bay. The doctor also reiterated that with this type of aggressive cancer (the tumor doubles in size every 2-3 months) even if it stops growing, and doesn't shrink, it is considered a success. He'll do 2 cycles, 28 days each, and then have another CT scan to see the progress.

It was a positive day, and we have been refilled with hope. It helps to have a refill once and awhile... and this one was definitely needed. Thank you for all your well-wishes and support. We couldn't fight this battle alone. Just like it takes a village to raise a child, it takes that same village to fight cancer.

Operation HOPE

We finally are off to the City of Hope tomorrow! We are staying the night at Bill parent's house so we can get up at the crack of dawn and hit the traffic without getting Tyler up. I can't wait to go to bed so that the time goes by faster. Silly, I know...

If you read the comment on the last post from Lori Buley (Bill's prom date) you will see she mentions the Verizon network with hundreds of people standing behind the carrier. We actually laughed out loud at that comment because just yesterday as Bill was checking his e-mail, he had so many offers of people wanting to go with us, he used the same exact analogy. Great minds think alike. Since I pray many, many times a day I'd like to be the first to ask the Big Man upstairs, "Can You hear me now?"

A Fine Line

I joked at the start of this ordeal that I really wanted some medication to make me numb. Not physically, just emotionally. Well, I did get a little help from the doctor (mind you, the patient has yet to get any drugs), and I am so thankful that I no longer cry hysterically at the drop of a hat. The amount the anxiety has lessened is really exponential. While ever so grateful, I feel like my wish has somewhat come true. I am a little numb. I walk a very fine line in regards to showing the utmost of strength, and letting my vulnerabilities show admitting that I am, in fact, human. Bill probably believes I don't "feel" as much as I should, but that is quite the contrary. To spare him, I oftentimes have my breakdowns at night after "the boys" go to bed. I have yet to master the art of balancing strength while showing weakness, and to be honest, I'm not sure I ever will.

3 Days to Go!

We really just have to get through the weekend, and then we are off to HOPE! I pray this is not an "introductory" appointment, but a planning one. I'd be thrilled if we have to return the very next day for his first treatment.

I finished the Lance Armstrong book and had 2 "a-ha" moments in the last section of the book. *Disclaimer - if you are the president of Lance's fan club please don't read moment #1... skip directly to moment #2.*

Moment #1 - Lance wrote the book before his divorce from his wife, Kristen. He speaks of her in such high regard and points out how she was meant to be his partner for life... well, we all know how that story ends. I don't fault him for getting divorced (hey, it happens), but I struggled reading about their relationship and believing the things he said, knowing full well they divorced shortly after he wrote it. I think that was a huge hang-up for me to accept, that and the fact that I love Sheryl Crow and don't think he should have ended it with her, either. *Stepping off soapbox...*

Moment #2 - Lance taught me a huge lesson! He was truly his own advocate for his health. He took the bulls by the horn and didn't take "no" for an answer. He researched, read, and prepared himself for the hardest fight of his life. We are quite aware of advocates in the education realm. The bottom line is, if you don't fight for yourself (or your spouse, or your child), no one else will. The patient is the customer, you have a right to get the services you seek. I admire that in Lance Armstrong's journey, and will take away a very important life lesson.

A New Book...

We have been keeping busy the last few days, and it is really nice having Bill home. I know Tyler loves it too! Bill has been able to take him and pick him up from preschool - which Tyler is actually starting to like. I am getting used to the routine of working full-time again. I guess that is an occupational hazard when you have the summers off. 5:30 rolls around awfully early in the morning!

My principal e-mailed me yesterday that she had an amazing book in her office that I had to read. Well, I have literally lost sleep while trying to stay up and read it. It is an inspirational book that is impossible to put down. The Traveler's Gift is the title and it is geniusly written. A man crashes his car and in the unconscious state afterwards he travels back in time and meets leaders and heroes at critical moments in their lives. He learns seven secrets for success from some of the wisest people to have ever lived. The book trumps sleep any day of the week!

Lance Armstrong

I am about 3/4 of the way through the Lance Armstrong book. First let me note that I truly think he is an amazing person and is an excellent role model. He has achieved so much and under such extenuating circumstances. That being said... he also knows all of those things. I feel like his book says, "I beat a very rare disease because I have incredible lung capacity and unstoppable athletic ability." I am sure it is just our particular situation, and my sensitivity is shining through, but it's not on the same inspiration level as The Last Lecture. Which, by the way, I think everyone should read, if you haven't already. If anybody has any uplifting/motivational books about this topic, I'd love to hear the titles!

Calm Weekend

Nothing much happening this weekend. We had such a great time staying at the Hyatt last weekend that it's hard to just stay home. Bill keeps asking what time we get to check-in. We had such a nice time just relaxing and hanging out. I was quite humbled however, to get seriously creamed in gin rummy. It was ugly! We got room service, watched TV that didn't involve a cartoon character or a puppet, and went to bed early (with Ambien); it was THE perfect evening.:)
(Wow, we are getting boring in our old age.)

Only 8 more days until Operation HOPE!!

Getting Better

All around, today was a much better day. Although, Bill tried to get an earlier appointment; he didn't have any luck. On the bright side, the appointment is 10 days away and after tomorrow we'll be counting in the single digits. Next week will definitely be a long one!

Finally

Finally, we have an appointment! The hugely disappointing part is that it is not until September 15th. Two weeks away! It has already seemed like an eternity that we have waited, and now the agony continues. Bill really wants to just start treatment! I have to agree... the time in between everything is excruciating. I know if He leads you to it, He'll lead you through it, but some days are hard to stay positive - today was one of those days. Sorry to be "Debbie Downer" (a classic SNL reference), but it's been a rough one. Please keep praying!

We survived!

We all survived many "firsts" today. Bill made it through his first day of disability AND the drop off and pick up at preschool. I made it through my first day of my 13th year of teaching, and Tyler survived his first day of preschool. He pouted the whole way to school in the car (Tyler, not Bill), and then was great when they got there. He took adorable pictures, too! Then... Bill went to say goodbye and it was all over - he cried. I'm sure it lasted all of 30 seconds, though. The sweetest part was when Bill went to pick him up, Tyler ran to him saying, "Daddy, I missed you!" then cried when he was picked up, which of course, turned Bill to mush too. Sometimes I wonder how we got so lucky to have the sweetest, most amazing little boy. He is so kind and even-tempered, just like his dad. Well, I may be a little biased.

I am THAT mom...

Tyler starts preschool tomorrow. Although it kills me to not be there his first day of preschool, I know it's something Bill will enjoy sharing with him. That is if Tyler doesn't cry and freak out when he's dropped off. I packed his lunch tonight and his backpack is all ready to go. I put the camera out so Bill can take his picture. He has his blanket and pillow to leave there, in case he ever needs to stay for nap time - but something tells me that my mom will never allow that to happen. On top of it all, I had his backpack, lunch bag, blanket, AND sheet embroidered with his name so they all match. I have turned into THAT mom! I even have gift cards with "thank you" notes for the teachers to show our appreciation in advance.

Something I learned about having a child that is of "school" age. The feeling that you want the teacher to love your baby is very real and very strong. I had no idea the urge to have him love school would be so forceful. I don't really care if he learns anything or not, I just want him to be loved by his teacher. It's a great reminder to myself as I start a new school year with my own students. That is all any parent wants!