Monday, June 29, 2009

Pre-op Testing Day

First full day in NYC. It's been a long day/night! Almost midnight and we finished dinner less than an hour ago... have not adjusted to the time change.

This morning, we went to NYU Medical Center for Hank's medical testing. We filled out some forms, one of which asked questions about Hank's birth weight, when did he get his first tooth, when were his first words...I don't know! I have three kids! I'm lucky if I remember their birthdates, let alone when they did their "firsts"! I had to improvise a bit...

The first appointment was with the pre-op anesthesiologist. She went over the admissions basics, what to expect the day of surgery, the procedure, etc... She explained the hospital's role in Hank's surgery thus; "we are like the grandparents...we take your child and love him, and then give him back to you." She was very knowledgeable and very kind. She told us what to expect the morning of the be there by 5:30 am, how to get to the surgical floor, when Hank had to stop eating and drinking (midnight) and what happens when it is time for surgery. They will administer a liquid sedative to make him woozy and then we will walk (or carry) him into the operating room. They are letting me "gown-up" and I will be able to hold his hand as he goes under anesthesia. What a relief! I envisioned him rolling by me on a gurney and me standing there in tears as he disappears behind the double doors...small, feeling alone and scared. Maybe I watch too much TV?

After the first meeting, we were sent back to the waiting room for quite awhile. Then we met with nurse Annette, who weighed, measured, tested his blood pressure and listened to Hank's heart and lungs. She also had the lovely job of drawing the blood for the blood panel. Hank had been warned prior to today, but he was still less than thrilled about it. But I sat next to him and held him in my arms and Susan held his hand... he sailed through it with barely a peep! And once again, the promise of a new Lego set danced in his head, eliciting the good behavior. Annette asked for Hank's immunization records, which of course I didn't bring with me, and gave me her fax number so Hank's pediatrician could fax it over.

We were then sent upstairs to the plastic surgery unit of "cranial and facial anomalies" to meet with Dr. Siebert's nurse practitioner, Pat. And so we had a bit more wait time. Susan went over to see if she could find a book about staying in the hospital for Hank, from the gift shop and Hank and I were called back to meet with Pat. She was great! She has worked with Dr. Siebert for 20 years and knows him well, and she knows this procedure well. She reiterated a lot of what we had already heard, and it was so nice to know that everyone is on the same page!

But she also told me a few new things...that if Hank develops a hematoma after surgery, he will be taken in to have it drained and repaired. And that the second surgery in 6 months is a revision...that they put in more tissue than is needed, and Hank's cheek will now be fuller than the "normal" side. After everything settles in 6 months, they will do a revision of the first surgery. This will also mean a short hospital stay.

After this meeting with Pat, she sent us over to the blood donation department so that I could donate blood for Hank's surgery. We got there and were given the evil eye for not having an appointment. The nurse reluctantly handed me a clipboard. I told her that I did have a cold and asked if that was going to be a problem? She said "forget it, you can't donate" and reached for the clipboard which I snatched out of her grasp and threw at Susan. "My sister-in-law will donate!" I announced. Susan, who had offered to donate if I could not, looked at the nurses and told them that she was willing to donate, but that she was on the tail end of a cold. They stared her down and asked her if she had been blowing her nose because it looked red. And with that they turned her down as well.

Feeling dejected, we made our way back to plastics, where we again met with Pat, who took us on a tour of the pediatric ward, up on the 10th floor. NYU is not a children's hospital, but they definitely make sure the kids are happy and well-cared for. There is a play room where they have music and art class. They have a library with books, videos and DVD's, they have gaming systems like Wii and Playstation and even a room outside the ward, where parents can escape and just catch their breath or break down in tears, without their little ones knowing.

The rooms are painted a pale purple with pretty curtains dividing the beds. The rooms hold two to four beds, with recliners for the parents. I asked where our private suite was...but apparently they don't exist! One parent will be allowed to stay with Hank each night. I want it to be me. So I pray this cold is gone. AND I pray that Hank doesn't get it...or the surgery is off!

Our tour concluded, Pat took us back downstairs, so we could leave. She said she would meet us prior to surgery on Thursday and would be there to update us throughout the day, on Hank's progress. She said to expect at least an eight hour surgery...maybe longer. UGH!

By the time we left, we were all hungry, so we took a walk around the hospital area in search of food. And also to get acquainted to the neighborhood in which we will reside for more than a week.
We had a nice lunch at an outdoor cafe and enjoyed the sunshine, while playing our travel game: "Would you rather" know...'Would you rather wear a wardrobe that fit you perfectly but was made of furry carpet OR would you rather the clothes you put on every morning be soaking wet?' Lots of laughs with this game... how about 'Would you rather have a TV in your forehead OR a telephone in your back?' That one cracked us up.

The evening was spent at Toys R Us at Times Square in search of the promised Lego set. But only after the death march up and down 42nd Street...because apparently none of us can read a map!

By the time we ate dinner and got ready to head back it was after 11:00 pm. Hank was so tired that I said we could take a taxi. We left the restaurant and Hank stepped to the curb, raised his arm and hailed us a cab!! He is getting very comfortable with the New York lifestyle!

So after a long day of hospitals, death marches and more, it is time to call it a day. Hopefully, we can take on the zoo tomorrow and have some fun!

Saturday, June 27, 2009

It's Time

It's here! It's time to head back to New York...and this time Hank will have surgery! Can't believe it's already time. After months of preparation and fundraisers, we are now ready. And so not ready. Mentally, I know this is the best thing for Hank. But emotionally... not there yet.

I've tucked all the kids in for bed. Heartbreaking to know that when Lucy and Charlie wake up in the morning, we will already be in the air. I don't want to go. It's all so surreal...
And so I go to bed tonight with a heavy heart and mixed emotions... and in the morning, I will shrug these feelings off for Hank's sake, and join him in this exciting journey!

The outpouring of support and love for Hank at our fundraiser last night was incredible! So many friends and people from our community who are touched by Hank's story. The BCS cheerleaders came out and said a cheer for Hank.! And at the end they yelled..."Go Hank"! Hank was glowing! And he applauded louder than anyone else in the room! I looked around at the other moms and we all had tears glistening in our eyes! It was a great night and the perfect way to send Hank off! Thanks to all involved!

That's it for now. I need to get a few hours sleep before we go. Flight leaves at 7:22 am! Pre-op testing is Monday morning and surgery is Thursday, July 2nd at 7:30am Eastern time. I will keep you posted. No turning back now... we are on our way...!!!

Wednesday, June 24, 2009

Happy 8th Birthday Hank!

Today is Hank's birthday! Eight years old! Wow! Such a little kid still, yet he is an old soul. This has been quite a year...he has been through so much these past 8 months... and yet he remains just your average kid. (well, I think he is ABOVE average!)
Not sure what we will do today. It's supposed to be in the high 90's... Jeff suggested a Rivercats baseball game. I'm pushing for a day at the pool! ...Thankfully Aunt Barbara has invited Hank and the gang over to swim.

But regardless of what we do, I am very excited to celebrate with Hank and Lucy and Charlie! It will be mellow since we already had the big "friend party" but Jeff has the place decorated with banners and looks like a party to me!

Four days until we get on a plane bound for New York. It's been a couple of stressful days. I am feeling very overwhelmed, which in turn paralyzes me and I get nothing done! So hard to plan and pack for 16 days...make sure the other kids' clothes are clean, their rooms are picked up, the guest room is ready, food stocked up...AND shop for Hank's birthday! (I didn't even mention not going to happen!) I think I just need to stop and smell the roses...! Which reminds me...

At mass on Sunday, our priest Fr. Soane, talked about thankfulness. And about how a woman parishioner asked him to say mass in thanksgiving for the positive things in her life. That even though things weren't great, she was thankful for what she has and those who are in her life. (OK, I don't remember the exact words, but this was the basic idea)

That hit me hard. I am grateful every day for my family...for these precious children I have been blessed with, my mom and sisters and for my husband who is our rock. But right now, I focus most of my time on Hank. Praying for him to get well. Praying for him to get through the surgery and recovery process. Hoping that this surgery will work. Asking God for the strength to keep my chin up and shoulder the responsibility of caring for this child. And asking for help to keep my heart intact, as I prepare to leave my littlest ones, Lucy and Charlie behind.

As I listened to the homily, I reflected on all that I have to be thankful for. And the biggest thing that hit me was the people who have rallied around us in our terrible time of need. The people who have agonized right along with us, who pray for Hank and keep us in their thoughts. Those who have offered kind words and comfort. Those who have poured their hearts into the fundraising and have helped us in so many ways. So even though this journey with Hank and Parry Romberg Syndrome is far from over, there is much to be thankful for.

I know it is said that God doesn't give us more than we can handle...and while I appreciate the vote of confidence...right now I wish God didn't think so much of us!

Thursday, June 18, 2009

Busy June!

June is a busy month even without the prospect of New York and Hank's surgery looming ahead! End of the school year, graduations, Father's Day...and for us we add in the fundraisers, Jeff's birthday and Hank's birthday! Today is Jeff's birthday...Happy Birthday Jeff! We have decided to drop everything and take the kids up to Lake Tahoe for a quick get-away. Lucky for us, Jeff's Dad has a home near South Lake Tahoe, so this is a "free" vacation! (only way we would be going at this point!)

I am feeling WAY overloaded with everything that needs to get done...departure is now 10 days and counting! But the prospect of spending some quiet time away from the day to day grind, with our little ones...just our too enticing! Lucy and Charlie haven't been anywhere since February and this may be our only chance to get up to the Lake, depending on how Hank is after surgery. I am dreading leaving those two behind when we go to NY, so I will take every chance I get to hang out with them!
Poor Hank...He LOVES to swim! And the weather has not been cooperating! Of course, today is the first good day for the pool and we are leaving! I am keeping my fingers crossed that we can take him swimming every day next week. I was thinking that he could swim when we get back from New York, knowing he would need to keep his head out of the water...but I had forgotten about the incision that will be made under his arm for the tissue harvesting. There is no way we are going to let him get in a pool after I don't think he'll have a lot of mobility, and two...infection! I don't want to open him up to germs. What a bummer for him! (He has no idea, and I'm not tellin'!)

I took Hank down to the lab for some blood work yesterday. We stopped at Target first where he wanted to get a new Lego set. opportunity for bribery...! So I proceeded to drop the bomb on him about the blood tests, and told him if he promised not to complain about it, I would buy a small lego set. "Will it hurt?" Hank asked. "Yes. It will sting for sure," I answered. Hank started to amp up the tears... "Legos!" was all I needed to say and he blinked back the tears and agreed to our deal.

Taking all three kids to the lab to get blood drawn is not an easy task and really it's just downright stupid! But I had no choice and away we went. They sat Hank in the chair and tightened the elastic band around his bicep. Hank winced. "Lego's, " I whispered. He sat quietly. Lucy and Charlie stood there with big eyes, watching everything. "Is it going to hurt?" Hank asked again... the lab technician, who was not very child-friendly said "You will just feel a little pinch for a second." That didn't turn out to be quite accurate... She inserted the needle and Hank's body jumped. "Ow, ow, ow...ow ow ow...that hurts!" was Hank's reaction. "It's OK, she's almost done, hang're doing fine," I reassured him as my stomach churned and she started to collect the 2nd vial of blood. Tears filled Hank's eyes. "Lego's," I said. Hank shut his eyes and squeezed the tears out, but he didn't make a sound, as she filled the THIRD vial... I was sick to see so much blood coming from such a little person. Lucy and Charlie stood on tiptoes to get a good look and oo'd and ah'd over the whole procedure. Finally it was over. Hank sported a gauze strip with medical tape over it, with pride. Cookies for everyone!

But now I am DREADING the pre-op testing at the hospital in NY. I guess I better stock up on some small Lego sets!

Exciting news! There was a post on "The Romberg Connection" web site the other day. The Discovery Channel's show, "Mystery Diagnosis", wants to do a show about Parry Romberg Syndrome!! Hurray! Some national exposure for this disease! This is what we need and what we have been working for!! With exposure comes familiarity...and with that comes research! Research for a cure! I feel like those with the disease and just a handful of doctors are the only ones who care or know enough to pursue the search for a cure. But maybe, just maybe with this mainstream exposure...PRS will become a familiar MS. I think MS was a hidden illness for a long time, but now people know about it and there is research going on!

Incidentally, a friend pointed out to me the other day...If you look at the world's population and you consider how many people have been diagnosed with PRS, the odds are much greater than one in 750,000 people. So, I went on the global population clock web site and figured it out. Let's say 1,000 people have PRS in the world. That's a one in 6 million chance! Yikes! We really need to be buying lottery tickets!!

I am in the process of finishing up the questionnaire for the show. I don't know if they will choose Hank. We haven't dealt with this illness nearly as long as others have. For us, it's just been a few years. But I am hoping they will choose someone who is going the micro-vascular surgery route with Dr. Siebert and not the chemotherapy route. And even though it's only been 3 years for us, I feel like we have put a lifetime of work into figuring out this disease and searching for the best treatment options. And I hope that others have the kind of support that we, friends, our church, and our whole community. Everyone has embraced Hank and have done so much for him and us!

For me, this is a battle I can't give up. Even after surgery and Hank's progression has stopped and he doesn't have any more symptoms...(because that will be the outcome of all this!)... I won't be able to put this to rest. More people need to pick up this fight. My hope is that we will become a non-profit and be able to help those who find themselves in our shoes and don't know where to turn. I want to be able to point them in the right direction and help them get to where they need to be. Pay it forward...

Monday, June 15, 2009

Two Weeks Before Departure

What a weekend! The winery fundraiser was a huge success! There is so much to say, I don't even know how to start...We brought the kids over to the winery during the set-up, so that Hank could get a feel for what was going on. Too overwhelming for him to be at the center of attention for a prolonged period of time, but I wanted him to understand the magnitude of what was happening that night. He got a chance to thank some of the vendors and meet the band. He was very excited about everything, but I notice he didn't ask to attend!
Jeff and I weren't sure what to expect. So it was great fun to arrive and see so many familiar faces! I walked through the crowd and spotted a friend who I hadn't seen in 20 years...I knew she was coming, but it was still a thrill to see her. As I made my way over to her, I caught a glimpse of another friend who lives hours away and was shocked to see her and her fiancee' there. And as I was torn on which way to go, I glanced over and saw another friend who lives 5 hours away and no way did I ever expect to see her!! So many good friends from here and from afar were there, as well as people we don't even know!

And Jeff had some surprises too, like the guy he worked at McDonald's with, when they were in High school. What a nice guy and he was so happy to reconnect with Jeff and offer his support. (I suspect a "bro-mance" is brewing)

My sisters really pulled it off and made this such a great night for all of us! We really attribute the success to seven amazing women: Barbara Arthur, Patty Wackman, Barbara Wackman, Susan Hopkins, Deborah Larson, Lynda Castle and Anne Figueroa. Without their dedication, hard work and belief in this cause, this night would not have happened! We are soooo grateful! And of course our wonderful brothers-in-law: Mike Wackman, Chuck Arthur and Stephen Hopkins, who lent their expertise along the way to ensure as many people as possible knew about our cause! We are blessed and Hank is so lucky to have so many people who love and support him!

The out-pouring of support was amazing and we felt like the bride and groom at the wedding reception, who just can't get to every guest. Kind of reminded me of the dreams I used to have as a know...crowded restaurant, I'm overloaded with tables and there's that one table in the middle of the room that I just can't get to. "I'll be right with you, " I call over. And then, in my dream, I keep taking orders and serving food, and then remember that table and run out to yell, "Be right there", only to find them getting angrier and angrier... and I am feeling more and more desperate! Whew...only a dream. And the reality was that at THIS event, everyone understood that we did our best and from the looks of things, everyone had a great time, left with auction or raffle goodies, learned more about PRS and Hank's battle and left knowing that they had done something great for our little boy.

We are in the middle of another fundraiser... a four day fundraiser at the local ceramic studio, "Color Me Mine". Very excited to take the kids and am hoping some friends will join us. So nice of members of our community to do these fundraisers for us!! We have offers of more, but with two weeks to go, I think they will need to wait until we get back. Should be just in time for the first medical bills to come rolling in! (ugh!)

In less than 2 weeks, we will be on a plane, headed for New York! OMG! So much to do between now and then. Happy to report that my sister-in-law, Susan, is going to accompany Hank and I on the first leg of our journey! OK, so technically, she is my sister's sister-in-law, but I am claiming her as my own, since Jeff is an only child and I only have sisters! She is such a great "sister" and I am grateful to have another grown-up along as we tackle the "Big Apple"!

Jeff will fly in the night before Hank's surgery and will stay for a week. And then Hank and I will be on our own, as he recovers from surgery.

But we won't be alone for too long...after Hank's stitches and drains are removed, Hank and I will take a train to Connecticut, so that Hank can recover in a private home and we can be with another family who has been through the same ordeal. Patty, is a mom who's son had the surgery 15 years ago. The doctor put us in touch and through Patty's story (and others'), we were convinced to move forward with the surgery. Patty and I have never met, only through email and phone calls. But this amazing mom has opened her home to us and has invited us to spend some time with them. And she's funny too. When she invited us, she said, "We're not weird or anything! You can ask the doctor, he knows us!" And I remember saying back to her, "but how do you know WE aren't weird?!" We both got a laugh out of it and I am so looking forward to meeting her in person and getting to know her better, although I already feel like I've known her forever!

We are really in the home stretch now. And so we prepare for departure, make sure the little ones are fully stocked with the things that they love and the house is ready for "Granny" to take over while we are gone. The Montessori school promises to give them extra love and my sisters and mom are here to help care for them. I hate to leave them for such a long time, but I know they will be well-cared for! (then why am I so upset?)

It's never easy being a parent, is it? We have to make choices for our children and hope we are doing the right thing. In my heart, I know this surgery is the way to go. I know it is the right thing to do. Wish it wasn't clear across the country and I didn't have to leave Lucy and Charlie...but if it were one of them instead of Hank, I would do the same thing. But more than looking forward to the trip, the surgery and recovery...I am looking forward to coming HOME!

Wednesday, June 10, 2009

Time to Sprint...

Big push for the winery fundraiser this weekend! Everyone is very busy getting everything prepared and the final touches. My sisters and brother-in-laws have done a fantastic job putting everything together as well as extended family and friends. I am amazed and somewhat overwhelmed at the generosity of the community! Jeff and I have tried to do our part with contacting friends, neighbors and business associates. It is so kind of my sisters to do all this for us and they don't want us to have to lift a finger. I don't know about other people, but for me this is hard to handle. I like to be involved and I like to do things for others. And now to find myself on the receiving end...difficult...another lesson in humility.

I feel like I am running a race and now is the time to sprint to the finish line...and I have no energy left...Can't stop now...we are so close. Just 18 days until we board a plane to NY...

**Helping Hands for Hank Fundraiser, Saturday June 13, 2009 from 6-9pm at McConnell Estates Winery in Elk Grove, CA.

I've been going through old photos of Hank growing up. We are making a DVD of his life, to be shown during the fundraiser. (thank you to Kirsten and Cheri!) It is so fun to look back at his sweet baby photos....and it breaks my heart at the same time. I find myself scrutinizing each photo to see if I see signs of the disease earlier than last year. Maybe a slight bit of atrophy at age 5, but I'm not sure... Can't believe Hank will be 8 soon. Feels like he was just three!
Got a phone call from my cousin, Steve yesterday. I love Steve, we are close in age, share the same sense of humor and have a strong bond even though we don't talk often. Steve has traveled all over the world and many years ago I went to visit him while he was living in Japan.
Steve called because he had spent a few hours the night before researching Parry Romberg Syndrome and the whole thing upset him. I think back to when Hank was first diagnosed and how I sat at the computer for hours at a time, reading everything I could find. And reading the stories of people who had suffered with PRS for years. Frightening! I tend to forget just how startling this disease is when you first start to read about it and see the photos of those who suffer from it.

I've been worried about Hank and how he's been feeling about his upcoming surgery. The other day, Hank told me he wished he had "Fairly Odd Parents" (Fairy God Parents). I asked him why and he replied "for all my troubles." Oh no! He is worried about his illness, I thought to myself. I asked Hank what kind of troubles... He replied, "my school work when I can't finish it...the blacktop at brother and sister bug me..." No mention of PRS, no mention of the surgery...just normal kid stuff! Whew! I guess we're doing something right.
Summer is here for Hank! While Lucy and Charlie are still in school, Hank is enjoying a life of leisure...pajamas all day... video games all to himself... reading to mom...control of the remote... childhood bliss! Glad he is able to have this time. I guess it's the calm before the storm...

Monday, June 1, 2009

You Just Never Know...

It's already June! Just 2 more days of school for Hank. He is so excited! I am happy for him. Time to relax and have some down time! We leave for New York in just four weeks. Lots to do between now and then!

Focusing on getting everything ready and making sure the little ones are well-provided for while we are gone. I really hate to leave them. I think that's the hardest thing about all this...well, except for the major surgery Hank will be having...! I'm sure they will be fine, they have each other...but Lucy is such a mama's girl and wants to be EVERYWHERE I am. (and I mean everywhere!) They are both such little sweeties! OK, I will worry about this later...

We have a local online community discussion board here in town. My sister, Barbara, posted info about Hank and the upcoming winery fundraiser. I noticed that our topic didn't get much play, even though it was titled "7 year old needs your support". So many people on the message board talk about how much they love kids and what big advocates they are, and yet we only had a few postings on the subject. So I thought that maybe people needed to be reminded that this could happen to anyone...even them. I think people get complacent...they see a poster or a jar with a sign about a sick kid...and they think. "Oh, how sad...a sick kid...that's too bad, " and they just continue on their way. So I decided to remind people that you just never know. Here is an excerpt:

I remember sitting in a Doctor's office in 2005, reading an article in Reader's Digest. It was a story about a young teenage girl who had this really rare disease that was wasting her face away and causing seizures. OMG! I couldn't think of anything worse! It was so tragic but her attitude was so fantastic...made you feel terrible for her and yet hopeful at the same time.

I recall scanning the article again, seeing that it was not contagious, genetic, and extremely rare. I had a 4 year old, an 18 month old and a newborn at the time. And I thought to myself, "Thank God that can't happen to MY kids". Little did I know that the rash that appeared on my oldest son's face at age five would be diagnosed (at age 7) as the SAME EXACT DISEASE that I read about three years prior!

I know I will never look at an ill child in the same way...I now know that illness can strike at any moment...that a seemingly healthy child may not be that healthy...and that life can change in an instant...! And I will never say or even think, "Thank God that's not my child."

Incidentally, the mom of the girl written about in that Reader's Digest article, contacted me and sent me some articles about her daughter. That's when I re-read the article and just about fell over!
You just never know...