We've arrived!

So I know I typed a whole post last night about getting here to Boston, but clearly I never actually hit 'publish' because I was so tired, and it's gone.  Sadly, I'm not even sure what I wrote, so I'm starting over!

Got to the airport and through TSA with no issues-remarkably. I got the whole pat down thing-not sure why since my boobs didn't set off the metal detectors. FYI-for those of you wondering why they even might is because my expanders have a port in them which is metal. They used a magnet to locate it each time they filled. This may explain what I was talking about-my last chest X-ray from the Cancer Center, and no, I don't have nipple gauges. 

TSA was very good with the bald kid. Didn't even make him take off his shoes! No pat down, no questions about the oxygen, needles, medicine, formula, feeding pump, guns or knives, drugs or scissors in his bag. JK!!

I was pleasantly shocked.  

While boarding, my sister Kim went ahead to put his car seat in, and I was waiting on the jetway with E in his stroller.  Next thing I know, one of the pilots comes up the stairs behind me and asks if he can help us on board. He makes everyone in line to board step back and then he takes one of E's bags, and his oxygen and helps me get him in.  I think I saw his name was Tom?  Anywho, pilot Tom was awesome!  

Meanwhile, the attendant helping Kim with the seat was Arsan, and told us she was a nurse. Whew. Convenient, right?  Again, fabulous.  

A couple was getting settled in the row in front of us with their one year old, and as she turns around she sees the bald kid and exclaims "oh, my gosh-you're Ethan!  I just read your FB page and blog last night!  I wondered if we would be on the same flight today?!?!  Best of luck to you-I will keep you all in my prayers!"  Kind of felt like a celebrity!

The only, and I mean only bad thing about this SWA flight was that we had to sit on the runway for an hour before take-off because one of the air conditioners wasn't working.  As we were all melting in a tin can with wings on asphalt the bald kid started to get a little overheated, looking like he might stop breathing at any moment, which of course caused me to get a little nervous, Arsan the flight attendant/RN came over with a cold compress for him and told us to put it on the back of his neck-because that will help cool him down the quickest.  The pilot kept us updated the whole time and we were finally ready for take-off!  

The lady seated across the aisle from us had helped carry a bag in for Kim, so when we ordering beverages, she tells us "I'm buying you Bloody Mary's for flying with him and cheers to a successful trip". Best Bloody Mary ever. 

About halfway into the trip Ethan started getting a little restless. I took him out of his car seat and held him for a while and every now and then I would lift him straight up so he could look around behind us. Each time I did that he would get so tickled and laugh hysterically. 

Once at Logan, as we were approaching baggage claim, these two guys that were on our flight asked if we had baggage they could get off the carousel for us-gotta love polite Midwestern raised boys!  Then one says to me "I loved it when you lifted him up during the flight and he would grin and laugh. Made my day to see that smile!"  And thank you dear fellow-you just made mine!  

And Tom, the awesome and attractive pilot walked by us in the baggage claim area apologized to us personally for the delay of our flight. 

I'm going to write a letter to SWA so these folks can be recognized for a job well done. I was kind of a nervous wreck, add sleep deprived, hot, an hour late arriving to a city I know no one in, with a handicap kid and a whole lotta shit-and I already don't fly well. Tom and Arsan made flight 1353 seemless and comfortable. Thank you SWA-you've got my business forever!

Other than being stood up by our transportation from the airport-due to our delayed flight, getting around Logan was pretty simple. Even with a stroller, oxygen, 2 large suitcases, 2 carry-ons, feeding bag, purse AND the bald kid!   As we went to get in the taxi line-they are very regulated here-no tipping-we relished the 63 degree weather, and actually had to dig through our bags for jackets and a hat for baldy. 

Taxi ride was uneventful except for the $60 price tag. Gulp. We will be exploring the T -public train-this weekend and getting much more familiar with it.  Though honestly we've walked everywhere since we arrived at the house. BTW-we are staying at the Yawkey Family Inn, a medical house like Ronald Mc Donald Houses-only with shared bathrooms....brought my flip flops and plastic carryall for the shower. Just like college!  The house is beautiful, rooms are clean and simple. And it is only 6 blocks from CHB.  

Many of you have asked for the address-

Yawkey Family Inn

241 Kent St

Brookline, MA 02446

If you send anything just send it to the address as above and put it attention to me. 

Brian shipped 20 cans of Ethan's food on Wednesday and we got it today!  

After we got checked in and unpacked, we decided to venture out to the find the hospital so we would know right where we were going the next day since we had to be there at 0730. It was an easy, interesting 15 minute, 1.5 mile walk to CHB where we bought some water bottles at the CVS in the lobby and had dinner at Au Bon Pain-also in the hospital lobby. 

Did I mention we all had fleece jackets on at 8pm!?!?!  And we slept with our windows open last night!?!?!  Sorry my Midwestern peeps. I am not missing the heat wave you all are experiencing right now! 

So, a day late on the update due to sheer exhaustion.  And forgetting to hit one button.  And in the interest of keeping my readers from being so bored, I will update with Friday's events tomorrow.

 When we wake up.

 About 3 pm....

T-33 hours....

5 weeks ago we got a phone call with a date, and it felt like a lifetime away. Now we are looking at a little over a day before we start this journey which is full of hope and promise for our bald kid. And is absolutely terrifying for me.  I think I'm doing the 'fake it til you make it' look pretty easy. I'm actually kind of a hot mess! 

Tonight was a personal little Bon Voyage Party for E with some of the most special people in Ethan's life.  Some people who have known E since birth, and some who have only recently fallen under the spell of that silly grin and infectious laugh. Slobber and all. 

Thanks to all who joined us. You all hold a very special place in our hearts for loving our boy and standing beside us through this roller coaster ride we got on 9 years ago.  And thanks for keeping me from crying until the very end. (Kim!)

Thank you for the awesome gifts-the AUTHENTIC autographed Taylor Swift pic from E's teacher at Maple Valley-Ms Mary. 

The "Boston Strong" shirts-for me, my sis and E-and bib from my dear friend Jenn. 

The cute, and oh so soft neck pillow from my sweet friend Kim-I might be stealing it myself for the flight!

And the Isabel Bloom "Super Hero" hand sculpted and painted statue from G-Ma Teresa and Grandpa Chuck, straight from Davenport, Iowa. 

And for all the love, hugs, good wishes, and support our family and friends have provided us during this time. 

Thanks to a dear friend and neighbor, Michelle, Nicky's Pizza in Liberty is donating 10% of their sales tomorrow night (8/28) as a benefit for Ethan's travel expenses. All day, lunch and dinner, dine in and carry out. So, if cooking in the hot, humid weather isn't your thing tomorrow night-come join us at Nicky's Pizza at 9771 N Cedar, KCMO 64157.   Behind the Sonic and QT at 291 and I-35. Great pizza, good sandwiches, and the bald kid will make an appearance around 7pm. Momma's gotta work til 7:30-so Hailey and Parker will take him up there after P's football practice. 

Again, we couldn't have done this without the help and support from all of you. It truly takes a village to raise a child, and in the case of our bald guy-more like a small country. 

We are blessed and humbled to have you all as our countrymen!  

 

Time to be that Super Hero Ethan. Put on your cape and fly through this challenge like you have so many times before, and like we know you can.

 Fly little bald guy, fly. 

So blessed

There are not enough words in a thesaurus to describe how special Saturday night was for us. 

Thanks to my supervisor at work I was able to leave work a little early so we could get a decent parking spot at Sprint Center-and we even scored a handicap one that was only a block away!

And thanks to our friend Jennifer who hooked us up in the snack department! 

The bald kid had the time of his life.  While waiting for the concert to start, we were right next to a huge screen that played snippets of Taylor Swift talking and videos and every time he heard her voice he looked right up at the screen!  

When Florida Georgia Line came out, he was a little unsure, as they were pretty loud and he didn't recognize their music at first. But once "Get your Shine on" and "Cruise" were playing he really perked up. 

Ed Sheeran was great, but not recognizable to the bald kid, though he seemed to enjoy the music. And he is one talented musician. 

Then it was time. 

For those of you who have never seen a Taylor Swift concert, you're missing out. I know I'm biased because one of my most favorite people happens to adore her, but she really does it up right in concert.  Besides the singing, cute faces, costume changes, being carried through the crowd, over the crowd, around the crowd and tip-toeing barefoot on a narrow plank, she sat and strummed her guitar and shared some words of wisdom with all the impressionable little girls there. 

Yes, wisdom at age 22. 

She talked about love and heartbreak. And how it will happen to you one day. And it will hurt and her way of dealing with all those adolescent girl feelings was to write music about it. Or in her words; "that's ok if you break up with me, I will just write a whole album about it!"

And about how she thought the meanness and games and jealousy and nastiness people say about you would go away as you got older. Only to find out that isn't true at all, that some people are just mean, always will be. That you can't change people, and that it's ok, you can only change yourself.

And that everyone is different, and that's what makes us all special and unique. And most importantly that when someone hurts you, to make sure you never do something that would make a person feel the way you did when your feelings were hurt. 

As a mother of a young impressionable girl, and a kid who is obviously different, I really appreciate this young lady's words. I've been pretty good with not crying lately, but as she sat and strummed and talked to the crowd I'll admit I borrowed the bald kids burp rag to wipe my tears away. And Ethan sat on my lap and just stared at her and listened so intently to her talking.  So few things in Ethan's life bring him such happiness, and to watch him react to her talking and her music was pure joy.  

The best part was when she would be directly in front of us onstage. He could see her clearly, and definitely hear her, and he would raise his arms up to her like he does when he wants us to pick him up!  I really became an emotional dishrag then!  

So, with the most heartfelt thanks to all of you, and especially to Brandie and Jake, you made this little guys world.   A month ago, heck, even 2 weeks ago he was in no shape to attend the concert. He couldn't handle the lights and sounds during the fourth of July festivities.  the fireworks made him a nervous wreck, his heart race and made him short of breath and cry hysterically. Which was when we knew for sure we were going to get rid of his tickets. Cause if he couldn't go, none of us were going. So it was meant to be that in the last two weeks he's been the happiest, most stable I've seen in months.  And for Brandie to tell me she was thrilled she won the tickets just so she could give them back for him to use is a true testament of what awesome, kind, special people we have in our lives. Saying thank you doesn't seem nearly adequate.   If, God forbid, Ethan is never able to attend another T Swift concert, know that for this moment in time, he was truly, truly happy. 

Now that I've made you all cry, because it was hard for me to even type this without welling up with tears.....I had my 3 month follow up at the cancer center today! And it was all good news!  The bad hormone that my cancer was so receptive to and feeding off of has been reduced significantly-from 188 three months ago to 18 today!  I have been getting monthly Lupron injections to suppress these hormones and they are clearly working!  Now I get to have my shots every three months!  But, my Vitamin D level is low, really low again, which is probably why I have been pretty fatigued lately.  So other than a new script for the Tamoxifen I get to take for 4 more years, I just have to increase my Vit D  daily and get it checked again in a month if I'm not feeling better. I really just thought the fatigue was related to everything else going on and the mental exhaustion all of this stuff with E was doing to me, but nope-it's fixable and I will be stronger than ever in a few weeks!  

And more good news-Boston has submitted a formal request to Ethan's Case Manager with BCBS for payment of services, Dr Kaine has written his formal referral AND we got a contact today for a company to provide us with a portable oxygen concentrator on the flight out and stationary oxygen while outpatient-to be paid for by our insurance!! Things are coming together, slowly but surely. Patience is not one of my virtues, so this waiting thing is really, really hard for me. 

Today I enrolled Hailey and Parker in High School. OMG-I have a Junior and a Freshman!  I can't hardly believe it. I am simply not that old. It was weird going to Walmart and not having to fight the insane crowds for markers and crayons and glitter glue!  Though we do have a supply list for the bald kid, he's not going to start school until he's back and better-can't risk an illness this close to surgery. And we all know the first two weeks of school the kids bring some germy-germs home. I may have to set up a decontamination station in the garage for Hailey and Parker to be scrubbed down after school every day before even breathing on the bald kid. 

My heart is breaking though, because Parker is playing Freshman Football, and his first two games are September 3rd and 4th. Both Brian and I will be in Boston.  And the 4th is E's surgery day. We talked to P about it, and I am so proud of his mature response. 

 "It's ok Mom. I know you couldn't pick the days you had to be out there. And I want you to go and fix Ethan so when you come home he can actually go to one of my games."  

If anyone wants to be a stand-in for Brian and I, and watch some awesome Falcon football, I will get you his schedule and you can join Hailey. I may have to have her Facetime me the whole game!  

So unfair what my older kids deal with. And the guilt I feel having to always put them second I will never get over. All I can do is make sure they know we would do the same for them, for any of them. Just means we have to make our time together more quality than quantity. 

What doesn't kill you makes you stronger. 

Doesn't make it fair though, doesn't make it fair.