A little curve ball from the bald kid...

Like any of you really thought we were getting through this that easy?

It's all ok-just bought us another night or two here. We were looking at discharge to the Yawkey house today, and headed back to KC on Monday. But Ethan heard discharge, home and Kansas City and I'm sure thought he hadn't quite kept everyone on their toes enough here yet. 

He spiked a fever last night.

To most of you that doesn't sound like a big deal. To a heart kiddo post procedure or surgery it can, unfortunately, turn into a very big deal. 

Does he have an infection?

Then he started having trouble breathing. 

His sats were staying in the high 90's on room air-but he was wheezy, stridorous, retracting and had an increased work of breathing. He was also all mouth breathing and sounded terrible. 

His feet became purple and cold again. 

Then he started throwing PVC's or premature ventricular contractions-a little early beat before his normal heart beat.

Like 42 a minute. 

Then he started having a bigeminy rhythm-or a PVC following every atrial beat. 

Then he started having missed heart beats-where his heart was just so confused it didn't know when to beat. 

Then the multiform PVC's showed up followed by VT-ventricular tachycardia-which is a pulse rate of more than 100 beats per minute with at least 3 irregular heartbeats in a row. 

That will bring a whole lotta nursing staff to your room!  

And to be perfectly honest-it kinda made me nervous all of this happening together at one time. 

Was he just having post intubation inflammation? 

Had he been exposed to something viral that manifested itself after his body was stressed out?

Is the valve still working perfectly??

Does he still need a pacemaker??

So the nurses called the resident and she came up to see the drama. 

And Ethan laughed at her. 

And if 4 nurses hadn't been stalking his rhythm and printed strip after strip after strip of these crazy heart rhythms-I'm sure she would have thought us all to be crazy!

So Ethan got a dose of Tylenol-2 total overnight. 

Pulmicort breathing treatment. 

And they added a Xopenex breathing treatment-NOT albuterol due to the cardiac side effects of it. 

An extra dose of Lasix. 

And drew labs. 

His potassium(K) came back a little low, so they hooked him up to a dose of it to run into his tummy for an hour. 

The low potassium can sometimes be the reason for the heart arrhythmia. And the EP team was hoping that to be the case, if his K level hadn't come back normal at 0630 and him still be doing this funky stuff. 

The Xopenex helped his breathing overnight enough to help him sleep-somewhat. Though I'm not surprised he didn't exactly want to crash. He thought he was coming here for fun and he got woke up after 26 hours of sedation and paralytic with a tube in his throat and a hole in his groin a half inch wide with a pressure bandage on it, an IV in his right foot, left hand and an EJ-external jugular-or IV in his neck, and soft restrained to the bed. 

I don't blame him being pissy at all. 

Or being difficult just to show us how pissy he was! 

Better news as the day has progressed. 

Chest X-ray clear-no pneumonia, no aspiration, no consolidation or even atelectasis. And NO pulmonary congestion! 

Fever has NOT returned. 

Still sounds junky so switching to Xopenex and Flovent by inhaler tonight to see if he does ok with those instead of the nebulized meds. 

Started chest PT-where they beat on his back with a pediatric face mask and instead of coughing he laughs. 

And get him upright to get that gunk out. We took him for a walk and he had a couple of really good coughs and sounds a little better now. 

He is having such a hard time breathing, he won't even put his hand in his mouth because he knows he can't breathe with it there!  And for those of you who know how much he likes to put his right hand in his mouth-you get the severity. 

Good news?  No bradycardia (low heart rates) in the 30's!  Lowest I've seen him today is 59, but otherwise in the 80's, or NORMAL!  

For now, all is holding steady. Which is still great news. We are NOT having an open heart surgery and we are leaps and bounds ahead of where EVERYONE thought we would be at this point. 

And as a very wise fellow heart mom messaged me today in my panic-

Remember, this is not a sprint, it's a marathon. 

So true BCR, so true, and thanks for reminding me to chill and take it one day at a time. 

Meanwhile, Dr Marx thought Ethan was acting out in protest of the leg warmers I had on him to keep his skinny little legs warm. He called it "cruel and unusual punishment". 

His Daddy and Aunt Katie agreed. 

I, personally, think they add to his cuteness, uniqueness and character. 

That and I'm his Mom. 

And I won the leg warmer argument.  

What do you think?

And I so love this happy face!

And his new t-shirt. 

Couldn't have said it better myself-found it in the gift shop on clearance!  

Now, just pray for no more PVC's or any funky rhythms, breathing to get better and some movement in the bottom half, if ya know what I mean! 

Team Ethan takes the trophy!!

I haven't fully updated what they found and were able to do yesterday to the the little bald guy. 

To be perfectly honest, it hasn't completely sunk in yet, and I'm tentatively scheduling flights for he and I back home this weekend-still kind of waiting for E to throw us a curve ball. 

So, long, long, long story as short as possible;

Ethan was intubated about 9:30 am yesterday and headed to MRI. 

The MRI confirmed free regurgitation of the PV (pulmonary valve)- greater than 50%

Right and left heart dysfunction

Mild-moderate regurgitation of the TV (tricuspid valve)- 13%

And a dyssynchrony of the ventricular septum 

Dyssynchrony being that the different parts of E's heart don't function in sync with one another-thus being the thought process behind why he runs such a low heart rate at times-bradycardia. 

*All of these findings we knew-but had to confirm. 

The best thing the MRI revealed to us is that though his ventricular septum is indeed dyssynchronous, 

HOWEVER not enough so that bi-ventricular pacing would be needed. 

Score 1 Team Ethan!

The MRI also showed that when the contrast Gadolinium was injected it showed he has no areas of infarction on his septum!!

Score 2 for Team Ethan!

All in all-GREAT news from the MRI overall. 

On to the echo, still intubated and doing great. The bald kid loves his sedation! 

Echo findings confirmed the findings of the MRI, and kind of seems redundant, but Dr Marx wanted a good 3D one to see where the previous conduit was at, and since he was perfectly still-get it pre-cath. 

On to the Cath Lab with Dr Porras and Dr Bentham at bedside, and Dr Marx consulting findings with Drs Baird, Lock and Marshall. 

No trouble gaining access for the diagnostic part of the cath in Ethan's right groin. 

Measured pressures-all within normal limits by Ethan standards. 

Then they measured the conduit where the previous-now free flowing-valve should have been. 

It was within the measurement constraints to support a Melody Valve!

Score 3 for Team Ethan!

Now to balloon the conduit to the size it would be with the Melody in place..and it held!

Score 4!

I got a phone call from Nurse Kate at this point telling me there was still much discussion about attempting to place the Melody Valve or not. 

I was figuring not, and she agreed.  

Then to inject the coronary arteries to make sure that if the Melody were in place, those would not be obstructed, thus blocking off blood flow to the rest of his heart. And they found that it did NOT cause coronary artery compression, in fact they discovered Ethan had an anomalous coronary artery that runs behind his aorta instead of in front of it anyway-so no chance for compression!

Score 5!

Then they injected the peripheral pulmonary vessels and found he has NO stenosis or obstructions that could have been causing the PV to fail simply from being backed up. 

Score 6!

Then they placed a stent in the conduit to support the Melody Valve. 

I got another phone call from Nurse Kate sounding a little more optimistic that the Melody valve attempt was looking more likely but much discussion was taking place. 

Score 7!

Then the cowboys took the reins and began dilating to get the 22 French sheath in that is required to deploy the Melody Valve. 

And they got it in. 

It seated nicely in the stent. 

It began working fabulously immediately!

TOUCHDOWN!!

Then the EP (electrophysiology) eval took place and they found that Ethan has NO accessory electrical pathways that could be dangerous to him. 

EXTRA POINT!

Much debate was then made about whether to wake him up after the required down time for the cath, or keep him sedated and intubated. Much to our agreement, he moved to the CVICU and was kept sedated and intubated all night. If he awoke and started kicking around, in true Ethan fashion, there would have been no way but surgery to stop the bleeding-thus, keep the little man down. 

He had NO strange rhythms, no Brady spells lower than the 40's, no pressure issues and no bleeding from the HUGE (per Dr Porras) hole they put in his groin.  

They also wanted to keep him intubated for an echo this morning to ensure everything still looked good and they didn't need to take him to the operating room today. 

And lo and behold....everything looked great overnight and on today's chest X-ray and echo!

He got extubated about 11:30 and he's holding awesome on 1.5 liter of oxygen by nasal cannula.  They will keep the oxygen on him until all the sedation is out of his system. 

In talking to the surgeon and cards today, they felt Ethan could not, and would not tolerate an open heart/bypass surgery. Once they realized that, they felt their only option to help him, and Ethan's only option for long term survival, was getting the Melody Valve in. 

So. They. Did.

Kind of scary to think we were supposed to have an open heart in KC at the end of this month....

Nobody could have hoped for a better-though completely unexpected-outcome! 

Even for a place like CHB, every cardiologist we spoke with confirmed he was "unique, tricky, complicated and challenging". 

Of course he is....

He's Ethan Rawley. 

Snuck in a pic post extubation:

Look at those pink, not mottled, warm feet!

Going to the floor now-will update with discharge and post-op plans later tonight!!

Thanks for everyone sending your good wishes and prayers to our special boy!

Proud.

I almost forgot to share that Parker dressed out for Staley's first varsity football game of the season on Friday!   I almost cried when he told us before I left, knowing I was going to miss it. We are so proud of him and all the hard work he has put in this summer with football. Also that he has straight A's right now.  I know most of you are thinking but it is only the 3rd week of school....

Let's just say Parker doesn't have a great track record with grades and follow through. I think he's found his niche, his place where he fits in, and I'm beaming with pride. 

He's number 47. 

Look at those smiles. Love them!! 

And a huge thanks to everyone who text me for his jersey number so they could watch for him on the televised game!  

His games this week are Tuesday at St Pius-starting at 5pm, and Wednesday at Staley at 5pm. If anything changes I will update. Thanks to those of you offering to attend and cheer him on in my absence.  Please be obnoxiously proud and loud so he feels like I'm really there! 

Hailey and Parker got to go to Hailey's Grandpa Chuck Ladner Memorial Golf Tournament on Saturday and spend the night at the farm with her Ladner family. Thanks to my BIL Trevor for taking them bright and early and spending the day in the heat. Trevor, my nephews Taylor and Kellen, and  Parker played in the tourney, and Kellen won a golf bag and balls!  Now all he needs is clubs for next year!  Hailey and Parker are keeping busy, but are very anxious about their buddy. They are used to being right with us along every step of the way with Ethan's previous hospitalizations and surgeries. We are very open and honest with them, and they get how important this trip and what happens here is for E.  But it doesn't make it any easier on a 16 and 14 year old.  They have given up a lot over the last nine years and often taken a back seat to their brother's needs, though you will never hear them complain about it. I am so proud of how they are dealing with all of this, just wish they could be here with us too. I am already planning a visit back here next year, with all of us, but for FUN!!

Today we are doing laundry, rearranging our suite (ha ha for those fellow Heart famiy Yawkey residents who know what I'm talking about!). We also need to venture out to find a hat for my nephew. 

My sister Kim leaves early tomorrow and Brian and my other sister Kate arrive around 1pm. It will be a long, long day tomorrow waiting for all the answers, so a post may come late tomorrow night. Brian will be in the air when I receive some of the results, so I won't share on here until he knows the plan. 

Please keep the bald kid in your thoughts and prayers as he goes under tomorrow. And for patience and strength for me as I get comfortable with the waiting room chairs. 

Day one appointments

Friday was a long, informational day. 

Sorry if I bore you. 

It started at 0730 with a check-in at admitting for insurance, address, basic info. The admitting guy asked where we were from and for my home and cell number then follows up with "which number would you like to be contacted on while you are here?"  Well asshat, since I just told you my HOME number was in KCMO, and we are currently in Boston-let's say we just list my cell as the primary contact. 

On to Cardiology Pre-op for vitals-height, weight, blood pressure, oxygen sats (100 on room air BTW!!)

med list, allergy verification. 

Radiology was next-and the tech was excellent with Ethan and asked about me holding him and when I told him I was an X-ray tech myself-and I am happy to hold him he was relieved and even gave me a 'sneak peek' at his films. The bald kid's heart is pretty huge right now. With a little pulmonary edema. I'm not surprised though, I noticed his feet were pretty puffy and he's had an increase in secretions since we flew. I just gave him an extra dose of Lasix yesterday. 

Then the fun part-lab. Alas-only two sticks. But after the second one Ethan threw one heck of a temper tantrum on the table-kicking and screaming and clenching his fists ands gritting his teeth. He finally calmed down after about 2 minutes. Bless Ms Judy's heart who had to stick him-she just let him get it all out and then gave him a sweet little squeeze. 

Then we met with Dr James (Jamie) Bentham. He is the cardiology fellow who will be bedside with Dr Diego Porras for Ethan's cath on Tuesday. I love him. He's English for one, and listening to him talk is entrancing. Called me Mummy more than once. He had read up on E, but now wanted my story-from the beginning to where we are now. He listened to me tell our journey and jotted stuff down, interjecting occasionally with a question or comment. Once that was done he shared with us what the Interventional Team's plan was when we got to the cath lab.  Ethan is going to be intubated with a breathing tube for a 2 hour MRI prior to going to the cath lab. He will remain intubated until all his procedures are done on Tuesday. 

Once access is gained, whether by groin area or neck area, they would do basic stuff-check pressures, check tricuspid valve leakage, etc.

Next they have to measure the conduit where his failed pulmonary valve currently is. 

IF it is less than 21mm, the next step is to ballon the pulmonary artery and make sure it does not compress any of his coronary arteries. 

Then he will inject contrast dye and just check out all the vessels in his heart. If Ethan has any peripheral pulmonary stenosis (narrowed or obstructed vessels getting the blood flow to the lungs) then they will stent those right then. 

As you can tell, one thing depends on the other, etc etc. Dr Bentham likened it to a football game and calling audibles on each play depending on what's in front of them. 

If all goes well, Ethan will get a new Melody Pulmonary valve in the cath lab-never going on by-pass!!

But....there's always one of those, right?

But, IF the tricuspid valve leakage is too great, it would need to be fixed by open heart. 

IF the conduit is 21.1 mm or greater he will have to have a new pulmonary valve (PV) placed by open heart. 

IF the coronary arteries are compressed by ballooning the pulmonary artery, he cannot have the Melody valve and would have to have a new PV placed by open heart. 

Whew. Lots of ifs. 

He said Ethan is a very interesting and complex little guy and that there will be multiple physicians involved in his cath. Dr Audrey Marshall-the Chief of Invasive Cardiology,  Dr James Lock-the Cardiologist-In Chief and Chairman of the Dept of Cardiology and Dr Pedro del Nido-Chief of Cardiac Surgery would all be present and weighing in on the findings. 

That's just the info we got from ONE Cardiologist!!

Next we met Dr Gerald Marx who will be Ethan's primary cardiologist while we are here. Lots of info here. Even if the pulmonary valve can be placed in the cath lab, his concern is that Ethan's heart will need pacing for his bradycardia and his dyskinetic septum. He also feels he will need bi-ventricular pacing, where pacer lines are placed in both sides of the heart, making it work more efficiently with the squeeze and pump action of both sides. I asked about his septum and if we find that from the MRI it is too ischemic (dead) what the next step is. His answer was that they would do everything possible to optimize his heart thus putting less stress on the septum to work in conjunction with the ventricles. They would make sure his pulmonary valve had NO regurgitation, his tricuspid valve had no regurg, and he had no stenosis-or narrowing anywhere.  But if it is too damaged, that is all they can do. There is no fix for it that Ethan qualifies for.  But again, we won't know any of this until after the MRI and cath. 

Audible.

He also talked about how they had never seen a kid before like Ethan who had a BNP as high as it was in 2011 (3535, where under 100 is normal) and only have right heart valve failure. Almost always it results in right and left heart failure and that replacing his PV in 2011 would never have fixed the whole problem.  He admitted Ethan is unlike any child they have ever seen, and lots of decisions will be made on the fly as we find out more and more info.  Now, when someplace like CHB tells you this about your child, I will have to admit, it kind of gave me goosebumps.  The facility just ranked #1 in Pediatric Cardiac Care by US News and World Report for 2013-2014 has never seen a kiddo like the bald kid??

Just confirms we are in the right place. 

Dr Marx left me with his card and told me he was the on-call all weekend so if we needed anything at all to call and have him paged. In the meantime, he told us to enjoy our 3 day weekend and take a Duck Tour, enjoy the weather, and eat some seafood!  Really like him too!  

We then met with the EP (electrophysiology) Cardiologist who talked to us about Ethan's history of Wolf-Parkinson-White. Though E doesn't have SVT episodes anymore, he could still have an accessory electrical pathway that could, at some point, be dangerous to him. So during the cath they will do an EP evaluation where they will try to induce an episode of supra ventricular tachycardia (SVT)  or rapid heart rate and see what happens. If they find one, they will deal with it accordingly. 

Audible. This cardiologist was a first year fellow and also very nice. He has even been to KC and said he ate BBQ at the place in the gas station?? He phrased it like a question like we wouldn't  know Oklahoma Joes!!  His wife is from a small town in Missouri-he's originally from Philly and we chatted about how spread out KC is. 

Last but not least we met with Paul the Cardiac NP who briefed us on arrival times, NPO status, meds he can have, meds to stop, any previous anesthesia issues, etc. I was so pleased as he did his physical exam on Ethan that he noted he had his right hand in his mouth the whole time and was listening to music on his shuffle. He typed in the notes for them to try to do IV's etc in the left so he can still self soothe with his right hand if at all possible. And that he has his own tunes and just who he listens too!! 

After 6 hours at CHB, we were done, we took a quick tour of the cath area and then we headed to get some food and fresh air. 

I am so impressed with this place and these doctors, in my heart I know we have come to the right place to get our bald guy fixed!  

Ethan and I literally stayed in bed until 3pm today-we both needed it desperately, and I got some extra snuggle time in before we hand him off Tuesday. Then we went exploring and found a great pizza place called Otto's where we had some fantastic pizza and a glass of wine. It's a good thing it's nice enough to walk everywhere here-and push a kid in a stroller-I get a chance to burn off those calories!!!

Tomorrow we are going to try to ride the T. (Their public train) into the city and walk The Freedom Trail, see Paul Revere's house and the North Church where he hung the lanterns exclaiming "the British are coming".  Lots of history in this town, can't wait to soak it all in. 

Did I mention we walked to Fenway Friday as they were preparing for the Red Sox game?  

Amazing. 

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.