Keep Your Head Above Water

This past month, my girls and I have lived separate lives...literally.  While the girls headed out to AZ to be spoiled rotten by their Grandmas and Aunties, Benjamin and I (and a few other special helpers!!) have been working our tails off trying to renovate their bedroom.  The project took waaaaaay longer than I thought it would, but in the end, I am thrilled with the way it turned out!  Unfortunately, I couldn't turn up any "before" pictures, but just imagine el cheapo white paint right on top of the dry wall (no primer) and you'll have a pretty good feel for how it looked.  Anyway, he's a few pictures of the project and of course, the finished product.

When I was in younger I used to watch General Hospital.  One of the main reasons I watched it was because of the hunk (Jack Wagner) who played the character Frisco Jones...but I digress.  If you haven't watched a Soap Opera, then I'll give you a brief primer.  Basically, EVERYONE cheats on one another and EVERYONE lies...a lot.  There ya go, now you got the basic plot for just about every Soap Opera out there.  During my GH years, one of the story lines was that there was a spy agency (the WSB) that several of the characters were involved in.  One of the agents, Robert Scorpio, ends up bumping into an old flame and former agent Anna Devane (Geee.....I wonder where *this* long term story arc ends up?!).  During one of their first encounters, Anna "faints" and Robert (and his wife) find out that Anna has a *horrible scar* on her face (that she covers with hair).  We are told that the scar is from an accident during her agency days.  However, as the story progresses, eventually Robert finds out that Anna's horrible facial scar is a fake...a piece of latex make up that she applies to her face.  Infuriated, he confronts Anna about the lie.  Anna's response struck a chord with me... here's the direct quote...

"After all my operations and skin grafts my face was finally mended...but not the scars inside.  Nobody else can see them, but I can feel them."

This past week has been very difficult for Ken and I.  Lots of emotions...pain, fear, frustration, anger....you name it we've had it.  That got me to thinking.  Wouldn't it be handy to be like Anna from General Hospital and have a scar that you could just paste on your body.  Then everyone would be able to see the pain you feel.   A visual reminder of the invisible wounds inside.  I wonder if we had a system like that, would people tend to be more gentle and loving with those covered in scars, or would we tend to avoid "those" people.  Would we reach out and cover the person in love like the Good Samaritan, or would go out of our way to distance ourselves from them like the priest and Levite?   I think I'll leave my readers with that thought while I search out latex makeup on ebay. ;)

In reply Jesus said: "A man was going down from Jerusalem to Jericho, when he fell into the hands of robbers. They stripped him of his clothes, beat him and went away, leaving him half dead. ³¹A priest happened to be going down the same road, and when he saw the man, he passed by on the other side. ³²So too, a Levite, when he came to the place and saw him, passed by on the other side. ³³But a Samaritan, as he traveled, came where the man was; and when he saw him, he took pity on him. ³⁴He went to him and bandaged his wounds, pouring on oil and wine. Then he put the man on his own donkey, took him to an inn and took care of him. ³⁵The next day he took out two silver coins^[c] and gave them to the innkeeper. 'Look after him,' he said, 'and when I return, I will reimburse you for any extra expense you may have.'

A fellow Histio Mom (Mom to Joey B that I mentioned last night) wrote this and it was so good that I thought I'd post it here on the blog. Right now it pretty much sums up how we're feeling...

I’d like to apologize in advance for the length of this post, but I’ve got a lot of information that I need to write out. :)

Wow!! What a trip! For those of you who have been following my blog, you’ll probably remember that we have been planning a visit to Texas Childrens Hospital in order to see Dr. Allen (one of the top US LCH researchers). Well, we just finished up the trip (I’m actually writing this in the airplane as we travel from Houston to Charlotte…ahhh the amazing wonders of the modern world!!). It has been such an amazing experience that it’s hard to put into words…but you know me, I’ll give it a try! ;)

The beginning of our trip was…uhhh…more than a little stressful, and that’s putting it extremely kindly! Having heard such wonderful things about the folks over at Corporate Angel Flight (and, let’s face it…having the cash reserves dwindle significantly). We were entered into their system and told that it could take a few weeks for them to match us up with a flight. Unfortunately, they had no flights available for us, so we needed to go to Plan B. Thankfully, our neighbor works for one of the major airlines in Augusta and was able to hook us up with Buddy Passes (which cost significantly less than regular airfare, but are standby seats). Plan B was going really great up until the day before our flight when our neighbor called us to let us know that all the flights of that day were becoming overbooked and the Buddy Passes weren’t going to work. Not a problem..on to Plan C. So I booked us on the 8:30 flight and finished all the packing and was ready to go. We got down to the airport and waited for our flight to board. About ½ hour before it was supposed to leave, we found out that it was going to be delayed because “they couldn’t find the pilot” (uhhh….yeah, I don’t want to be on a flight without one of those!!”) That was fine because the flight out of Charlotte was delayed too. Long story short, at about 10:00pm the gate agent informed us that the flight was going to be delayed until 10:30 and we had missed the last connecting flight out of Charlotte, so we would be booked on the 5:30 am flight the next day. Needless to say, we returned home very frustrated, but there was nothing we could do. After fixing all the hotel and rental car arrangements, we got some sleep and got up at 4:00am for our flights. Thankfully we were able to contact the Drs. office and reschedule our appointment for a couple of hours later since our new flight would have arrived at in Houston at the time when our appointment was scheduled.

So tired and a little on the frustrated side from all our “adventures” in traveling, we arrived in Houston and I am pleased to say that things were simply amazing from there on out. After freshening up at the hotel (who after hearing about our airline experience let us into our room before checkin in time!) and having lunch, we checked in at the oncology area and were truly blown away!! First of all, the hospital is HUGE!! But even though they see a high volume of patients, you would never know it, because a trip to the oncology department is almost like a visit to a children’s museum. There was a large playroom filled with all kinds of different toys and staffed by a lady who acted out puppet plays for the children, then there was at least two arts and craft areas (there might have been more, but we were met by the Dr. very shortly after our arrival, so I didn’t get to check everything out). There were several mobile gaming systems for older kids and a decked out infusion room. There was also a dedicated Child Life Specialist for the oncology wing (who brought Benjamin a DVD player and Spongebob DVD to his room for us!).

But the real treat was when we got to meet up with Dr. Allen. It’s really hard to explain what a relief it is to talk with a doctor who specializes with the ins and outs of this tricky disease called LCH. Dr. Allen was gracious enough to give us two hours of his valuable time, but those hours passed quickly as Dr. Allen listened to our concerns and addressed them one by one. Obviously, we were able to discuss many things during our appointment, and we’re still processing a lot of the information, but overall, Dr. Allen was very pleased with Benjmain’s progress. After having his radiology department review Benjamin’s scan, he said that we are very well on the road to recovery with his skull lesions and we stand a good chance of avoiding him developing Diabetes Insipidus. He was, however, a little concerned that Benjamin’s last bone scan showed some activity in his L4 vertebrae and suggested that we have a PET scan done to determine whether it looks suspicious for active disease. If the PET shows anything abnormal, he suggested that we have a biopsy performed. If the biopsy shows that there is active LCH then he suggested that we switch to “salvage” chemotherapy. While I hate to think that that might be the path that we need to travel, in many ways it is a relief to know that we have a plan of attack. However, if the PET looks good, then we will be right on track for ending up our chemotherapy in August…and maybe being free of this rotten disease once and for all!! Obviously, you can tell which way our thoughts and prayers are headed!

While this trip did not go exactly as planned and was *much* more expensive than we thought it would be, we are thrilled that we finally have answers from someone who’s seen a lot of LCH. Ken and I return to Augusta with much to be thankful for, much to think about, and a whole lot to pray about!! So, if you don’t mind, we would appreciate your prayers for our family. Our journey isn’t quite at an end yet, and we could use all the comfort that we can get. I would also appreciate prayers for several of our other LCH warriors. Nataly is having a very rough patch of things and is in the hospital waiting for answers as to why she has taken such a bad turn. Joe N. has been switched to a more aggressive chemo (he wasn’t responding to the last treatment) and seems to be on the rebound (but he could still use your prayers). Joey B. has had a recurrence and is going to need a stem cell transplant. My friend Justice S. needs prayers…she had another seizure a couple of days ago. And last, but certainly not least, prayers of thanksgiving for my little princess Sophie whose liver tests came up more positive than expected. Sadly, this is only a fraction of all the fabulous Histio warriors that I know about, but I’ve already wrote and epically long post, so I think I will wrap it up for now. :)

Author's note: I have many pictures to share from the trip, but it's very late so I will have to post them tomorrow. :)

I have sneaky friends.  Very, very sneaky friends!  Several months ago, my friends submitted my name for a contest in the local Parenting magazine.  I knew something was up when my friend called me and said "Hey, I just wanted to let you know that we entered you into a contest.  So if you get a phone call saying you won something, don't think it's a spoof or anything."  So I mentally filled the information under the heading of "Wow, my friends are really cool and loving." and thought very little of it.  And then I got the call.  Karin from the Augusta Family  magazine called me up and let me know that my friends had written a stirring submission about how wonderful of a Mom I am (yes, I was able to stifle a laugh!) and that I had been chosen for their Mommy Makeover.

And this is where I will be honest...  I hate makeup...I hate dresses, and I really don't enjoy the whole "fashion experience".  I'm not sure why.  I know that many people would kill to have a beauty makeover, but the first thought in my mind was "Run like the wind Nellie!  You've got a head start and they can't possibly catch you!!"  But you see, I love my friends.  And my friends had gone out of their way to make this possible.  And so, I resigned myself to fate.  I, Nellie...Queen of shorts and tie dye shirts, was going to have a make over, and there was nothing to be done about it.

I like to think that a lot of my success from this event came from the fact that I was honest right from the get go.  I told the wonderful ladies that I didn't know anything about fashion and to treat me like a preschooler.  Use small words and be very specific about what they wanted me to do!  And so we tried on clothes...a LOT of clothes as we slowly whittled down my body type.  I was forbidden to hang up any of the clothes once I had tried then on and was severely reprimanded when I folded up a pair of pants.  (Kidding!   Actually, I was treated like a Queen and it was tempting to ask how much it would cost for me to hire the Dillard's fashion team as my private fashion consultants!  However, seeing as I have extremely limited financial reserves at the moment, I was pretty sure it would be out of my price range.)

After my killer outfit was finally discovered, I was whisked away to the hair salon.  Again, not another one of my strong points.  I learned that there is actually a term for my favored type of hair style...wash and wear.  Funny...I thought it was wash and stick under a baseball cap!  We were even daring and added a little bit of a red tint to my hair...oooo lah lah!! 

With hair glued in place with a large amount of hairspray, we headed over to makeup.  Of all things, this was the thing I was dreading the most!  Makeup and I have had a long history of malevolence.  I do believe the last time that I have had makeup on was when at my wedding...and that was a looooooong time ago!  There are many reasons why I dislike makeup, but probably the biggest one is that I feel like I have mud globbed all over my face.  Pretty mud, but mud all the same.  Anyway, I am pleased to say that even with all that history, I found this experience with makeup to be much more pleasant!!  Maybe it's the really high quality makeup that they used...maybe it's that I had an expert putting it on, but this makeup felt...dare I say it...comfortable! (Ahhhhh!!!!  I *can't* believe I just typed that!!!!) 

And then finally after everything was in place, we had the photo shoot.  Again, very unfamiliar ground!!  I'm used to being the one behind the camera!  Thankfully, the photographer was very patient and told me exactly where to stand.  I wish I could show you some pictures from the event, but I'm afraid we're going to have to wait until the next edition of the Augusta Family  magazine comes out. 

When it's all said and done, I have got to say that the Mommy Makeover was a really amazing event!  Never, ever, ever in my life did I dream that I could have had that much fun at a makeover!!  I'd like to thank Karin and the Dillard's team for all the hard work that they put into making the Mommy Makeover such an amazing event!!  You ladies really know how to make a woman feel like a Queen!!