Update: 02/12/2016 - Maroon for Maisie

02/05/2016

BGVTers!!! This family was in the PICU at Cleveland Clinic Children's the same time we were with BRODIE. They've been desperately searching for a MATCH for their 6 year old little girl - Maisie. Maisie has severe aplastic anemia and needs a bone marrow transplant - Maroon for Maisie.... There are two things that I have to ask of you.

#1 They may have found a match for Maisie. In Germany. A 24 year old. This could be an absolute miracle for this family - this man needs to complete testing - he has taken the first step - blood testing.

Please PRAY, send JUJU, good VIBES - what you all do best so that this sweet little Maisie can have a chance to go on to live the good life. If you want to be tested please go to www.bethematch.org

#2 They have met a little girl - Lucita (10 from Honduras) who is getting treated and is inpatient at the Clinic. She is in isolation and cannot have any visitors - Maisie and Lucita have become fast friends through silly faces, goofy smiles, sending letters and drawing pictures to one another - could you help raise Lucita's spirits?

Church? Girl Scouts? Boy Scouts? Kids Clubs? Sports Teams? VALENTINES DAY LOVE?

Please send this sweet little girl some LOVE - can you imagine being 10. 10. 10. in isolation - in a different country. fighting an epic battle. A battle of life or death? Heartbreaking.

If you cannot send a letter, maybe share this post - let's get LUCITA LOVE LETTERS and both sweet littles GOOD VIBES!

Lucita
M-53
9500 Euclid Avenue
Cleveland, Ohio 44195

A beautiful day begins with a beautiful mindset. When you wake up, take a second to think about what a privilege it is to simply be alive. And what a difference you may be able to make in someone else's life. A little bit of YOUR kindness can make a huge difference in someone elses life. SPREAD KINDNESS. SPREAD LOVE. SPREAD GOOD VIBES.

‪#‎lettersforlucita ‪#‎maroonformaisie ‪#‎brodiesgoodvibetribe ‪#‎chooselife‪#‎thegoodstuff

Maroon for Maisie

February 5 · 

Maisie is feeling good. She had a recent inpatient stint due to a fever but she has been home all week. Maisie’s ANC count is on the rise again, which may mean she is over whatever virus she was fighting last week.
We received the results from Maisie’s recent bone marrow biopsy, which showed less than 5% cellularity in her bone marrow. These results confirmed it is very likely that her drug treatment therapy is not working. While it was not easy to see the results of the biopsy, we were not surprised, as most of Maisie's counts continue to remain low.

After we received the results of the biopsy we started to firm up plans for our next move with Maisie's treatment. In the process, we were informed that they found a potential bone marrow match for Maisie!!!! The match is a “10/10” match from a 24 year old male in Germany!!! Amazing! THIS POTENTIAL MATCH HAS NOT YET 100% COMITTED TO DONATING HIS BONE MARROW, but he has submitted blood work and we are hopeful that he will eventually donate. Please keep praying.

Maisie's doctor informed us that we are planning to head down parallel paths. Because Maisie is "stable", her doctor would like to make it through flu season before starting chemo and heading into transplant. We will keep her on her drug therapy during flu season in hopes that we may see it start to work. If her drug therapy ends up unsuccessful, we will also plan on heading inpatient at the end of March to begin conditioning, with the transplant at the beginning of April (which depends on her potential bone marrow match going through with the donation).

Maisie understands that her body is not working correctly, and that we are working with the doctors to get her "insides" working the right way. We never lie to Maisie about what is happening regarding her treatment. She usually tells us what she wants to know, and we follow her lead and answer her questions honestly.
During one of her hospital stays, she told the nurse, "I declare -- I hate this place!" I firmly believe that Maisie's hatred for inpatient stays is based mostly on the fact that she feels so isolated when she is there. This girl's need for social interaction is something fierce! Maisie's dislike of inpatient stays made me very nervous to tell her that her current medicine might not be working and that she might have to spend a longer amount of time in the hospital. When I broke this news to Maisie, she was very quiet. She did not ask many questions. So I left the conversation alone. A few days later out of the blue, Maisie informed me that she was going to be "Ok." She said, "Mom I can totally go and stay in M53 again. I am not alone there. I have Lucita. I can do it. I can stay there. I know that I am not alone there." While we never let Maisie stay by herself when she is in the hospital, she spends most of her time with adults and she misses kids so much. She misses her siblings, her cousins, and the rest of her family and friends. I know that she draws her strength from other children. I think it took Maisie a few days to process the thought of staying in the hospital again, and while she processed it, she drew her strength to start this new battle from other children. She is not alone and she knows it. That is AMAZING! This girl can do this!

The transplant road holds no guarantees and can be riddled with complications. If Maisie has to go that route, I am confident that she can do it. She can fight this battle and she will draw so much of her strength from other children. Again, we are following Maisie's lead and it is beautiful and strong. She is AMAZING!!!!!!
Please consider Lucita this Valentine's Day. If your children have an extra Valentine please think of sending one her way. Lucita is also not alone and it is so important to try and show her that. She truly reads every card that comes her way and the cards are a wonderful part of her day. She LOVES them and the support. She draws strength and happiness from those cards.

Lucita
9500 Euclid avenue
M-53
Cleveland, Ohio 44195

Thank you all for the support. Just like Maisie, we draw so much strength from all of you supporting this journey. Thank you.

We kindly ask that you continue to keep Maisie and Lucita in your prayers.

God Bless, 
Meg

Update: 01/30/2016 - The Choice to Give Life

01/30/2016

Something that is so sensitive and so tragic yet so selfless and amazing that a little life could save so many.

This family said goodbye way too soon to their little man and heroically went on to save 5 other lives because of their choice to choose and save lives.

Bless them and send them good vibes in the face of tragedy. ‪#‎donatelife‪#‎chooselife ‪#‎brodiesgoodvibetribe

Matt Hayden

January 29 · 

We are heartbroken, and to know that the Amherst and North Ridgeville communities share in that feeling is overwhelming. We cannot say enough words to thank the communities for their outpouring of support, love, hugs, prayers, donations and anything that we needed. He was a light in our lives and he will be forever in our hearts. Drew’s organs were donated to Lifebanc and he has helped change five lives so far. We find comfort in knowing that his heart is beating again, and parts of him will live on through others. He would have loved nothing more than knowing that he IS a hero to so many. He was the kindest, most loving boy with an imagination far beyond what we can put to words which made him the greatest son. 
From the bottom of our hearts:
Thank You,
Matt Hayden & Julie Hayden

Please like and/or share so we can thank as many people as we can through social media

Update: 01/27/2016

Update: 01/27/15

We started Monday AM at Cleveland Clinic Children's
with Bloodwork with our favorite VEIN WHISPERER - Big John... as usual he was on point.

Stick. Draw. Viles Filled. Boom. Always giving us his best... We will be seeing him once a week for the next couple months...

Our Drs. Appointments now are every other week.... 
Last week we saw Dr. Radahkrishnan (our LIVER dr.) Then we will have clinics (where the whole team comes in) once a month as well.

And that is it. 4 Labs and 2 Drs Appointments... As long as we stay on course. that. is. it.

Brodie’s labs the past couple weeks have come back great – everything is almost where it should be – potassium levels are high.

Dr. Krishnan explained - this is most likely stemming from a side effect of the medication (PROGRAF) ... So we need to watch it - a long term effect could potentially be damaging to his kidneys.

Sooooo we could start him on ANOTHER MED to keep sodium in and flush out potassium... You know my MAMA-BEAR-NO-MORE-MED-RADAR started whirring...

After conversation we decided to give it some time to see how things progress with little man before we treat it with anything.

As for our family on the homefront...

You all know Harper (Brodie's 4 year old sister) has been so important to me to be part of this and not an outsider looking in...here are some things that have evolved...

Every day at lunch I pretend to call her on the phone -

"Hi this is Brodie's Mama.. is this Harper the Pharmacist? I was wondering if you could help me with some medications...." (and I did have to explain at first WHAT a pharmacist does and WHY they are SO IMPORTANT)...

And then I pretend to drive over to her pharmacy (as she eats her lunch at the kitchen table) and she grinds up Brodie's aspirin so we can put it in his food. She loves this and asks every day to do help....

On a good day she also can tell you the names of all of his medicines - and she knows what the really really important one is...

Some things that I have put in place are really taking a life of their own...

She is now officially obsessed with "Magic Soap" aka Hand Sanitizer - Santa brought us TONS in our stocking (he knows all) and they are the scented Bath & Body Works kind and she applies it literally over 100 times a day... But she is CLEAN and it smells GOOD so I guess this is not bad... right?

She also is VERY conscious of when other kiddos are SICK... She has learned through the hard way of canceled play dates or us not being able to go somewhere because of an illness...

The other day we were face-timing with our cousins who were under the weather and she looks at me big sister game face on - she looked so scared - and she says "Can these GERMS come through the phone? Can we get these things over here from them?" HAHA!

We talk about other families that we have met and their "babies" that are going through similar life challenges...

Every night in her prayers she prays for Baby Luke (Luke's Legendary Liver League) and Baby Isaac and Baby Grace... And any other family that we come across who is going through their life challenge we add to our list... Most recently Brave Blake's Battle who just got a new kidney!!!

We are realizing that Brodie is slowing coming off of the CRAZY-LIVER-TRAIN and his body is now resolving to a SWEET LITTLE healthy 8 MONTH OLD baby ...

In his DRIVER SEAT is a PERFECT normal little BABY and in his PASSENGER SEAT are his little LIVER challenges that might occasionally want to take the wheel.

So now, today, we deal with “the hard work of growing” what all love nuggets deal with liiiiiike growing his teefers – 2 of his bottoms have busted through and I see one of the top ones about to come through as well.

He now (much to my chagrin) has been singing DA-DA DA-DA DA-DA at the top of his lungs with Russ beaming every time the words escape his lips.

He loves jumping and jumping and jumping in his jumper.

He stares, enamored at his little sister laughing at her every move.

He smiles at me with a Cheshire cat grin when I feebly attempt to singAdele's “Hello” it is his very favorite song right now.

He can do all of this while he sits, by himself (surrounded by pillows “just in case”) proudly saying silently “LOOK AT ME. Look how BIG and STRONG – I AM!

Yes my little warrior man. You are SO very strong. Stronger than you will ever know.

Update: 01/20/2016 - Tick Tock

Update 01/20/2015

Tick tock tick tock tick tock – remember that clock? That was the endless countdown that was going on in my head as the minutes ticked closer to transplant. I simply have that clock going on now but with the opposite impact – we are moving AWAY from the big transplant date! Can you believe we are celebrating 3 months post liver transplant – 3 months! 13 weeks! 91 days!

Let me explain why THIS 90 days was such a HUGE milestone to me.

Many of you have asked how I have made it through this time… I have decided to share with you some little things that have helped me as we maneuvered through this in hopes that it may help you along the way of your journeys as well…

KNOWLEDGE is CONFIDENCE

At the beginning there were so many things we did not understand… Diagnosis = Biliary Atresia (what the heck was that?) to CURE = transplant (ummm we KNEW the definition of this but WHAT??) – I was thirsting for information on everything what was the disease? What was transplant?

The Cleveland Clinic Children's staff AKA the EXPERTS were and still are SO helpful – they were patient and informative and the docs even DREW me examples and worked through scenarios, they gave me statistics and numbers. They told me things and I listened, I journaled, I captured the words, theories, philosophies, phrases… Often I had to think through that night after or the next morning to understand and comprehend everything we were dealing with. I would go back and ASK MORE and more…

A wise man – Dale Carnegie once said “Get ALL OF THE FACTS. WEIGH all of the facts. Then COME to a DECISION.” Thank you Dale Carnegie – thank you. (https://www.dalecarnegie.com/assets/…/Secrets_of_Success.pdf) And that is what I HAD to do to get through - be non-emotional and very focused on WHAT we were dealing with.

After I started getting a handle on “IT” I thirsted for more. I needed more. I needed to pacify the agony of the unknown and get my hands wrapped around what the “technical side of this information” and how it translated into “real life”.

I needed the internet in a way I had never needed it before. I was afraid though because as we all know as great a tool the internet is others have created it to act as a weapon with false info, bogus claims that were falsely created, there also were true stories that did not have happy endings (I had to pick and choose when I read through those) I had to be defensive for my own good in what I allowed myself to engage in…

In our day and age, we have the gift of being smack dab in the information generation and Social Proof is everything. I needed to find people (real people - no catfish please) who were going through or had gone through this journey.

I needed the pioneers to share what their journey was like so I could know the highs and lows the scaries and the celebrations. And combing through the internet I found quite a few Mamas who had children that journeyed through liver transplant and they painted light and began to illuminate color on my blank canvas of what life moving forward was like. (I was so pleased and relieved to hear their stories – more than any of them will ever know)

One Mama I was pointed from our tribe was just a 4-hour stretch south of me in Cincinnati. She and her daughter Bea had just gone through the same thing we were embarking on – she bravely and courageously donated her liver to her daughter – successfully. She kept a blog (http://www.make-statements.com) through their whole experience sharing everything transparently with honesty

There was another mama that someone in our tribe connected me with who had two little boys go through this – TWO.

These brave women shared pictures, words, videos, emotions, statistics, medications, everything – I scoured their blog and emails hanging on their words and inspecting every picture listening to their emotions and stories – I am happy to say all of the kiddos and families are doing great!

These Mamas had given me a gift - exactly what I needed: information, details and hope.

I had emailed Hillary (Bea’s Mother) with questions the day before I was to find out if I was in fact a qualified match for my little man. They were almost exactly 3 months ahead of us on their own journey.

She said this to me in one of the emails “If I could tell myself 3 months ago that we would be where we are now - it would have eliminated SO much doubt and worry. Everyone's journey is different but I want you to know that I am starting to see the light and Brodie will be there soon too.”

So that was on my list of goal – 90 days out. 90 days out. 90 days out. If we can make it 90 days out, WE can do this. We can and will do this. AND WE DID!!!!!!!!!!!!! Here we are.

Knowledge is Confidence. When you are dealing with something – anything – get the facts (from reliable, trustworthy sources), weigh the facts – and continue to use them as a source of strength. Continue to pull courage from what you know. That confidence – that SWAG is what you need.

Whether it is walking into a Medical Appointment, pitching an idea at work, trying to make a decision for yourself, child or parent – make sure you know what you are dealing with.

Get the facts.

Reach out to others who have done this – have an open mind – listen to what they say. Then you choose – what you will arm yourself with. Your choice what to focus on. You decide.

“Inaction breeds doubt and fear. Action breeds confidence and courage. If you want to conquer fear, do not sit home and think about it. Go Out and get busy.” Dale Carnegie

I cannot agree with this more. Knowledge give you confidence. Confidence destroys fear.

Big, little, medium, life threatening, daily, work, personal challenges all come at us sometimes all at once, sometimes one at a time. They all take us to have courage, patience and reach within to figure out what our best options are – for us.

I cannot tell you how many times I went back to my notes, emails, blog, pictures and repeated – we can and will – we can and will – we can and will – and here we are – WE DID AND WILL CONTINUE!

So be brave BGVT Warriors – be brave – on your challenges give yourself 90 days and make sure to look back to see how far you have come. You will be amazed!

XO - TT

‪#‎brodiesgoodvibetribe ‪#‎sliverofliver ‪#‎thegoodstuff ‪#‎tiguetough

 

Update: 01/11/2016 - #GSDStrong + #BGVT

Asking for GOOD VIBES and serious positive juju to be sprinkled on this little strong warrior today TREY. Little Trey has had GSD - glucose storage disease - since he has been little - he just turned 3!!! and is having surgery today at Cleveland Clinic Children's Brodie and I stopped by after our date with John to say hi to my old college friend and her little warrior - we even got to say hi to his Daddy who is serving our country overseas. Please keep this family in your thoughts today! Go Trey Go!!!! You got this big man!!!! 

Update: 01/06/2016 - Holiday Hangover

Update 01/06/2016: I have been struggling to conceptualize all of the emotions that I have been overcome with the past couple of weeks so I apologize for laying low, I think I needed some time for me.

936618_1672437476349271_3429776470106625341_n.jpg

Holidays are tricky right? I feel like everyone has something that either makes their heart soar or crumble around this time every year.

I think of our 2014 Christmas and how thrilling it was for my family – My brother & SIL had just welcomed their 2nd child in December, my other brother & SIL were expecting in April 2015 – just five weeks ahead of us - and WE were going to be welcoming Baby #2 in May 2015. That would take the grandkid count for our parents from 2 to 5 in a years time and we would have 3 cousins just 5 months apart.

The air in our house that holiday was filled with electricity of love, hope and excitement. We all laughed and dreamed of what the Year 2015 would be filled with - “this time next Christmas…” We all pondered about the cries, chaos and happiness that only toddlers and infants can create.

That time was so hopeful and promising of new life and new adventure. Reflecting on this and going through this Christmas and being part of the screams, fun and cries – just like we anticipated but with only half of the Tigue tribe. The other half was at home staying away from “cold and flu germs” to protect our sweet guy. This time was so bittersweet to me.

So of course it gave me time to reflect on where I was a year ago – I had anticipated the New Year of 2015 to be filled with craziness and chaos, coupled with love and laugher as we adapted another human in our household and our adventures in parenting continued…

I never envisioned that it would also hold terror and and agony for us. As we went through the throws of DIAGNOSIS of BILIARY ATRESIA and then… CURE through LIVER TRANSPLANT – a successful, BEAUTIFUL, LIVING DONOR liver transplant – to us CELEBRATING a MIRACLE made through modern science, technology and medicine at the Cleveland Clinic.

2015 also allowed me to witness a TRIBAL COMMUNITY RALLYING around us to help us FLY through the lowest point in our lives. Feeling LOVE like we have never felt before. Feeling SUPPORT in ways we could never dream of asking for.

That gets us to the end of 2015 to embark on 2016 with the same FEELING of HOPE and PROMISE of NEW LIFE – just in a very different way. And that my BGVTribe is overwhelming.

The Liver Team gave us off for Christmas and NYE we did not have to go in for 12 days. Yup 12. It was heaven J you don’t realize how taxing the journeys are – more mentally than anything. The drive. The tests. The “results”. The fear or relief that you are overcome with each time. So regardless to say it was peaceful for me and the family.

Brodie had his clinic yesterday and he is just doing beautifully. We saw our big guy first thing in the AM – John – he as usual is amazing. Brodie can now just sit in my lap and get drawn. It took John about 45 seconds to fill up all the tubes.

We then had a nice long break and had an opportunity to briefly meet with another family that I have befriended through this life adventure whose little guy also has Biliary Atresia. He is just a couple weeks age difference from Brodie and these strong warriors are going through their own life adventure similar to ours.

Then we made our way down to go get an Ultrasound from some of our favorite ladies. Seriously Brodie is in love with all of the techs – he stayed awake the whole time – smiling, dancing, playing with the cord, trying to eat the cord, dancing with the cord… Lots of fun. As usual our Tech was patient, playful and spot on with her work.

We then made our way up to Clinics to get our results. Our 7 month old chunky monkey warrior weighed in at a whopping 22# 8.75 oz., Brodie has been OFF of his steroids for a month now – so all the chub you see and those cheeks you want to gobble are 100% HIS. (now if we could just get him a little longer – HA!)

Ultrasound looks great, Labs look great, He looks great.

Labs noted that his potassium level is high which most likely is a side effect from the Prograf that he is on and this can cause other side effects down the road - so we need to monitor to see if this needs to be treated (this would be treated by another medication – which of course I want nothing to do with). We are currently on 4 Meds (Prograf - Tacromolis, Acyclovir, Bactrim & Aspirin) and 2 Vitamins (D & Iron) which in the grand scheme of things is really really good. But of course as a Mom you don’t want any more medicine if your child can get by with out it!

So all in all Brodie is just LIVING and being an everyday 7 month old – adapting to the life of growing teeth (it is SO HARD) (we just got our TWO BOTTOM TEETH) and learning to EAT FOOD (he has decided he wants REAL table food).

So our little WARRIOR – our little Brodie is doing just FAB.

Which brings me back to the feeling of HOPE and PROMISE that I think we all have for the beginning of the New Year. I know as the anticipation of what the year 2016 will hold for us – using these emotions to help us CONQUER this life challenge is the only option and it should be for you too. So through OPTIMISM and HOPE and BELIEVING we embrace this NEW YEAR – BRING ON 2016.

LOVE AND WARRIOR GOOD VIBES

XO TT

‪#‎brodiesgoodvibetribe ‪#‎sliverofliver ‪#‎TIGUEtough ‪#‎donatelife

 

Update: 01/03/2016 - Break from the Cleveland Clinic

Well we enjoyed our break - we had a whole week and a half off from going up to the Cleveland Clinic Main Campus - to enjoy the holidays (the longest I have gone from going down there every week since 9/9/15 - almost 3 months!!!) As much as I love our team - my people - I SO enjoyed the break - mentally :) I am so happy to report that our break was medically non-eventful. Tomorrow we are headed up to main campus for a full work up labs, ultrasounds and clinics. Hopefully the only thing they notice on little Bro-Man are his new two bottom teeth (or teefers as I like to call them) cutting through. Brodie seems as good as ever - he watched his big sister turn 4 and LOVED Christmas - the highlight for him was boxes and paper - lottttts of paper! Fingers crossed for big smiles and great results. Good LUCK to everyone starting their work week after the nice break - Good Vibes coming at you! #brodiesgoodvibetribe #sliverofliver#tiguetough