Random Photo Friday

Catchy title, eh? Like maybe some sort of thing I'm going to start and every Friday you'll check on here and find a random Friday photo.  Or not.

Truth is, I don't have too much to journal about right now and I'm not complaining!  Besides the fact that the third grade is trying to kill me (seriously?  Seriously?!  Four... count them... one, two, three, FOUR big projects due in the next couple weeks!) our lives are pretty normal right now.  Hence, a random photo rather than an update.

This photo was taken a few days before her surgery to remove her lymph nodes and place the catheter.  We knew it would be our last opportunity to hit the water for awhile so we broke out the new cool SPF 50 swimsuit and hat, slathered on a ton of sunblock and headed to the ocean.  This picture was taken before Rachael got stung by a large jellyfish, hitting both arms and across her chest and leaving scabs that continued to swell up a month later.  But nevermind that sad bit of information and enjoy the beauty of the before shot.

And just because they are gorgeous and I love them, here's a picture of my men.

So there are my random Friday photos.  Of course, technically it's no longer Friday but I have not gone to bed yet so I'm going to count it.  Tomorrow.... well, later today, I will present a visual for the reason behind my late night.  Can I just say right now though that Tom and I cannot wait to see a certain little girl's reaction to our labor of love?

Tweet tweet, ya'll!

Who is this hip child living in my house?!

So, I broached the subject of GHOST! SCARY GHOST with Marc and no joke, he looks at me and says, "Mommy, ghosts are SO last season!" Oh, excuse me Mr. Vogue, I had no idea you were so in tune with the latest Halloween fashions.

At least he still called me Mommy.

Big Bird and Boo!

A few months ago Rachael found a masquerade mask with feathers and sequins in my closet.  Before my mother goes, "I don't want to know anymore!" let me assure you that it's been there for years from when Tom and I were invited to some sort of party.  Probably a masquerade one.

So, she finds the mask and I say, "Hey, we should have you use this for Halloween.  You can be a bird!"

Oh stupid me!  So now, like five months later Rachael wants to be nothing but a stinking BIRD for Halloween.  I've been trying to talk them into being ghosts but where last year that would have been like, Totally Cool! this year her mind is made up.  A bird.  All I can say is thank God Tom knows how to sew.

I did manage to find a homemade bird costume that looks really cute and the lady claims she made it in one night.  So maybe we can pull it off in three.  Marc hasn't decided what he wants to be yet but I'm really going to try to push the ghost angle.  "Nobody will know who you are!  It's the perfect disguise!  You can go in only your underwear underneath!"  What might tip the scales in my favor is if I tell him it's scary.  We've always had the policy that we do not allow scary costumes.  I know we had a reason for this in the past but this year I'm just tired and GHOST seems like such an awesome idea!

I was telling my friend Amanda that I get these comments about how wonderful I am and though I love to read them, I feel like you don't get the full story.  I told her I need to write about some of the lousy stuff I do.  So there you go folks.  I waited until the last minute so I am going to go against my principles and ask my son to be a scary ghost for Halloween.

I realize that's a pretty lame "lousy" thing but I don't think the internets are ready yet to hear about the time I tried to guilt my mother into making a bird costume for Rachael by saying, "But mom... she has cancer!"

My Best Friend

Tom and I decided that we needed some time alone to reconnect and have fun and refocus on each other.  We sent the kids to stay with Grandma and Grandpa for the weekend and headed to San Antonio.  Last time we did this was a little over two years ago when we celebrated our 10th anniversary and we are both so glad we did it again.  It was relaxing and fun and we barely talked about the kids at all.  I told my mom this afternoon that we were flirting with the idea of just not coming back and she said, "Flirt all you want as long as you show up."

Tom and I met a little over 13 years ago and I knew immediately that I never wanted to be far away from him.  I wasn't looking to get married as I had somewhat recently gotten out of a relationship that pretty much destroyed my faith in myself to make a good choice.  But I was so drawn to him.  We worked together and as I got to know him better, I began to feel such a pull that it was nearly painful.  About six months later he finally clued in to the fact that I am totally awesome and he wanted to be with me too.

What I love about our marriage is that we both still feel so lucky to have one another.  I was talking to a friend recently about how usually in a relationship one person loves more than the other.  I spent a good amount of time thinking about who that is in our relationship and I don't think there is an answer.  I think Tom loves marriage more than me.  That's not to say I don't love marriage but I still sometimes think it would be fun to be single.  I wonder what my life would be like.  Not Tom.  He would never want to be single again and I know if something were to happen to me, he would most likely remarry.  And I would be happy for him because I know that in a way it would be honoring to me.  Our marriage is such a safe haven that he would desire that again.

I love marriage but for me, it's marriage to HIM that makes it so sweet.  It's hard to describe my love for my husband without making the internets want to collectively puke but the same things that drew me to him that first moment continue to do so everyday.  How could I have known back then?  It astounds me.

For us, it comes down to this;  We never, ever doubt that we love each other.  We never doubt that we don't want to hurt the other.  Sometimes we do, but we know it's not our intention.  We want the best for each other.  We respect each other immensely.  We make each other laugh.  We have fun and act goofy and still find new ways to enjoy each other.

We have been through major career changes, four long-distance moves, buying two houses, unemployment, financial crisis, and now, a child with cancer and our marriage is so strong for all of it.

This weekend we went to a comedy show and one of the comedians was asking how long couples had been married.  One couple was married the longest at 30 years and the comedian was practically in awe of it.  He was going on and on about what an accomplishment it was and how he could barely wrap his mind around it.  Words cannot express enough the peace that comes from knowing that if, God willing we are both still around, we will see 30, 40, 50 years or more together.  Marriage is work and life along the way makes us both realize that we do have to be vigilant and continue to protect it but it is so sweet.

Thank you for marrying me Tom.  I am the luckiest girl.

At least it's not a six-month deployment to Iraq.

Tom and I have made a difficult decision this week that seems a little crazy on the surface.  We have decided to do the high-dose IV interferon in Houston.  Which means that Rachael and I will basically be moving there for a month.  I have many reasons for wanting to do this, even though it means we will be separated and financially it is scary but it comes down to this:  We cannot make decisions that we will later look back on.  This is a common refrain, especially among Melanoma Warriors because so much of the treatment has mixed results at best.  We have to make decisions we know that we will not be able to regret.

We have been offered a trial for Rachael's treatment of interferon.  The standard way of administering it has been four weeks of high dose through an IV, followed by 48 weeks of a subcutaneous injection done three times per week at home.  The trial would mean the same high dose IV, however the "sub-q" injections would be done only once per week and the intereron would be "pegylated".  I asked her oncologist, Dr. H. what this means and he said, "pegylation is a chemical process that prevents a medicine from being cleared from the body as quickly."  He said that he believes the 3x per week injection is actually out of the system within a few hours but he thinks they will find that they pegylated interferon stays in the body throughout the week so that she will have at least a low dose in her at all times.

Are there any chemists out there who can explain all this to me?

This trial appeals to me for many reasons.  First of all, there is mixed research about the effectiveness of continuing after the one month high dose.  The results of going ahead with the additional 48 weeks do not seem to offer much additional benefit.  Having said this, her oncologist, as well as the oncologists of the other parents I have spoken to who have children with melanoma all believe we would be crazy to not do it.  I've actually written about my angst regarding interferon here.  So the idea of a trial which Dr. H. has said it is essentially the same medication and they expect it to perform much the same way and which might just show better results and saves Rachael 96 injections over the course of a year sounds like something I want to sign up for.

I think this is a better plan for our mental health.  Because I know the results are mixed I can absolutely see in three or four or ten months into this thing we will have moments of "This is stupid!  Why are we even doing this?"  Being in a trial that may help pave the way for better treatment will help us in those moments.  That thought won't necessarily help Rachael but avoiding the 96 extra shots would get her vote.

Then there is the fact that we can always opt-out of the trial but we only have one chance to opt-in.

There is just the one big down-side to all this and that is we cannot do any of our treatment at our local children's hospital.  It must all be done in Houston which means of course the temporary move there for the month and frequent trips (probably once a month with a few overnights here and there) for the next year.

This is going to be hard but I have to say, after my experience in a different - albeit wonderful - hospital, I am honestly really relieved that we won't be splitting her treatment.  I know our local hospital is very good and I've heard great reports and if we had started here I probably wouldn't want to go anywhere else.  I just feel better doing it all at MD Anderson.  It's our hospital.

So, we're working things out and making arrangements and it looks like I will go there on the evening of November 11th.  We have the opportunity to meet another little Melanoma Warrior, Chloe, who is 10 years old and was diagnosed when she was 8.  I hope we can have dinner and give the girls a chance to play that evening before they return back home on the 12th.  On a side note, we are very excited to be sending out Christmas cards this year designed by Chloe!  Her angel was chosen this year by the Children's Art Project.

On a completely different note, while the kids were getting ready for school yesterday Marc kept running into my bathroom asking, "Can Rachael wear my belt?"  "Can Rachael borrow my socks?"  I'm all like, "I don't care," he runs out pumping his fists going, "Yesss!"  I hear them being all giggly and cute and when it's time to leave I see that my very different children who I wasn't even sure liked each a few months ago came out all matchy-matchy.

 They are really going to miss each other.

Ownership

We are learning to take the good with the bad.  It's humbling but necessary because otherwise, like my brother described it, we could look back at this time as one bad time followed by one not as bad time.  Rachael is doing very well but every single day there is something we wouldn't be doing or even be thinking about if not for melanoma.  I am finding I need to remind her more often that her life is not bad and there are many blessings.  Like dancing with Daddy at a jazz festival.  Or not losing her hair.

Something that is hard for any child, and especially one going through somewhat invasive medical treatment is the lack of control.  She tells me every day that she WILL NOT EVER have another shot again.  Or that she is going to simply refuse to do any more dressing changes and she is very firm that interferon is simply not going to happen.  She knows that she has no control but she likes to say it.  Tonight she told me again that the answer to something upcoming is "No," and when I told her that she doesn't really have a choice she smiled and said, "I know that, I just like saying no."

Good for her!

I love that that is one of her coping mechanisms.  Even though I know I have no control whatsoever, I am going to pretend I have a choice and exercise it.  I'm going to totally use this.  "Hey Rachael, let's just walk in together this morning and refuse the medicine.  Let's tell them that we quit and run away fast before they catch us!"  I should have recognized this sooner because even when she was at the height of misery her first day with the staph infection and begging, BEGGING to leave I looked at her and said, "Should I just unhook all this stuff real quick and we'll make a run for it?  Those doctors look slow, I bet they can't catch us."  She was so miserable but there was a twinkle in her eye at the thought of it.

I believe she's learning that though the things happening to her don't make sense, there is a necessary purpose and so I think that if I really did try to unhook her and make a run for it, she would stop me.

So that takes me to this incredible program offered at MD Anderson and many other hospitals around the world called Beads Of Courage.  The concept behind the program is that "Every bead tells a story of strength, honor and hope."  From their website:

What is the Beads of Courage Program?
The Program is a resilience-based intervention designed to support and strengthen the protective resources in children coping with serious illness. Through the program children tell their story using colorful beads as meaningful symbols of courage that commemorate milestones they have achieved along their unique treatment path.

how it works

Upon enrollment each child is given the Beads of Courage bead color guide with a detachable membership card. Their Beads of Courage journey begins when each child is first given a length of string and beads that spell out their first name. Then, colorful beads, each representing a different treatment milestone are given to the child by their professional health care provider to add to their Beads of Courage collection throughout their treatment as determined by the Beads of Courage Bead Guide (available from Beads of Courage, Inc.)

I cannot say enough how much I love this program.  Rachael doesn't have any control over what is being done to her body right now and a lot of it is very confusing.  But with a simple bead she gains understanding, a sense of ownership and a visual representation of her own cancer journey.  I won't go over each bead and what they all mean but I can tell you this... If you ask Rachael, she knows. 

I'll be honest and say it does not make getting a shot or doing a dressing change easier but as her beads grow I see in her a sense of accomplishment.  It goes from "It happened to me." to "I did it!"

And that is a gift.