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Need a getaway?

(Don’t we all?)

Join us on Saturday for a cheek swabbing during the Macan It Happen Bone Marrow Donor Drive and you’ll be entered to win a Rendezvous Package for two courtesy of The Raphael Hotel which includes accommodations in a luxurious room or suite, a three course, romantic meal at Chaz on the Plaza.

(Yes, please!)

 

 

 

 

 

 

Already on the Be The Match registry? Excellent! You’re entered to win too…with any financial contribution to Be The Match.

Who’s ready for Saturday? Who’s ready to Be The Match?

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Super Bo pins are here!

Kim McKinnon designed two adorable Super Bo pins for Team Macan It Happen (thank you, Kim!!!). They’re $12 each or two for $20.

Design 1:

Super Bo shield

Design 2:

Super Bo ribbon

If you would like to purchase a pin (or two), please click on the DONATION link on the left side of this page. Before you complete your donation, in the Special Instructions field, please be sure to add what pin(s) you want. Kim or I will get them delivered to you ASAP. If you’d rather not use PayPal, please contact Kim ka_mckinnon@yahoo.com or myself, kelliegill@gmail.com and we can go from there. Please do not email Carolyn- we know you understand that she’s got enough on her plate right now. ūüôā

Thanks for Macan It Happen!

-kel

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September 5, 2012 - 1:08 pm

Show your support for Super Bo | MACAN IT HAPPEN - […] September 15 and Saturday, September 22 at Heritage Park. The girls will also be selling Super Bo pins and Macan It Happen t-shirts. More information about the booth location will be available closer to […]

Parenting…..

Eleven years ago, when I became a parent, or co-parent, I was ready. Well at least I thought i was?!? Then I had a terrible pregnancy, 7 months of bed rest; we had a new house, a new life and I was not doing my part. You never anticipate bed rest. Long story short, the second they put her in my arms I knew everything was going to be okay! Why am I saying this? Well, one of the hardest things in this world is parenting. Are we doing the right thing? Will they grow up to be respectful, responsible adults? Have I done my part as a parent?? ¬†I have known for a very long time I wanted to be a parent a MOM!! You can only hope what your doing is enough. With that being said, yesterday was one of the HARDEST parenting days we had…

Last Wednesday in Cincinnati, Bo’s port would not flush- no big deal. Well it actually was a big deal. ¬†They told me to have it looked at when we get home! Mind you we drove 600 miles to this hospital and 600 miles home.¬† I couldn’t get into the doctor Monday, so we went Tuesday at 12:45. We got to the lab and the IV team (Vanessa) was awesome. She couldn’t get it to work either, so she immediately took us up to the infusion clinic so we could put some meds in it to get it to flush! Four hours later no flushing. The IV team came back and said he needed a chest x-ray. We had the x-ray done and I noticed it looked a little different from when he had it placed only 7 weeks ago. They sent us home.

We got home at 7pm and I gave Bo and Brookie a bath- no big deal. ¬†At 8:55 my cell phone rang and it was one of our doctors. She was very shook-up and very adament that we had to get back to the hospital right away!!! I said “Okay.” She said “Carolyn, Bo’s port has come apart and the tubing is in his pulmonary artery.” I was like WTF!!! ¬†I very calmly said, “What do you mean?” She again was not trying to freak me out BUT she was freaking out so I started to panic a little. I get off the phone and I had to go tell John we had to go back to the hospital and this is why… I started crying.¬† I couldn’t wrap my brain around what I had just told my husband. I called in the troops and everyone came and got the other kids and we headed back to the hospital. She called me again on our way to make sure we were on our way.

We arrived at the hospital and everyone we spoke to looked at us like, “Oh, that’s the kid with the tube in his heart…” We were moved up to PICU and waited until morning to see what was next. Clearly we knew it had to come out, but how, where, when?? I, again, can’t believe what is happening my already very sick 2 year old. He just became even more sick, and it was something that was totally out of our control. They have no idea how it happened, they have NEVER seen a port break like this!

Wednesday morning, well closer to noon, they took us to the pre-op (and the most amazing pre-op team- maybe because all of them were about to witness something they may never see again??). The intervention radiologist came over and talked us through everything, I mean everything. We got to walk Bo all the way to his operating room where we said goodbye to our baby and placed him in the hands of the people who where supposed to fix it save his life!!??  You know when i said parenting was not easy? This by far was the hardest thing John and I ever had to do:  hand off our baby to have a tube taken out of his heart and lung.

The doctor went in through Bo’s groin in his right leg and he ran it up through his little body and had to run it through his heart and into his lung to get the piece of tubing out. ¬†He promised us if in the first 3o min he couldn’t get it then he would stop and we would have¬†to be transferred and have open heart surgery.¬† Fifty-three minutes into surgery (it took them 20 min to get him to sleep and prep him) the nurse called me and said the tube was out!!! ¬†BUT they still had a long way to go. ¬†They had to put the new port in and take the old port out! All in all it took right at 4 hours and 45 min to complete. We finally got to see our ¬†brave boy!!! I still can’t go into detail about how unreal I think this was!! Being scared because your son needs a bone marrow transplant is hard enough, but getting the very frantic call from your doctor saying your 2 year old needs emergency surgery because he has a tube in his heart takes it to a whole other level. The doctor was so wonderful. He came out to the waiting room and sat with us and explained everything, from the time he started until the time he finished the procedure. It was quite amazing to hear him talk about it, how he may never see this again. I told him to make sure he plays the lottery…..

We could feel everyone’s support and prayers. Thank you so much. We are so glad it’s over. Bo will have an¬†echocardiogram next week and should get the all clear!

Thank you-

C

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July 27, 2012 - 6:20 am

Kim - Oh my god! I’m sitting here, reading your post with tears rolling down my face. I’m so so sorry. You, your family and especially Bo are amazing. Stay strong, you are all in my thoughts and prayers.

July 27, 2012 - 8:14 am

Solveig "Flipper" Cagwin - Carolyn, the Surgeon surely felt God leading him thru that incredible surgery! I just read this and am thanking God for holding Bo close through this journey! Prayers continue to lift Bo and all of you up for God’s Healing, Mercy, Grace, Comfort, Encouragement…. I could go on and on…. Hugs, Flipper and Bill

July 27, 2012 - 9:13 am

sheri - Carolyn, thanks for taking the time to let us all know everything….I know you have so much in your life…please hug your family and tell them we love them all….and we won’t stop praying for Bo’s healing.

July 27, 2012 - 11:28 am

Kelli carr - Carolyn: Omg girl! As I sat reading this
Tears just streamed down my face. God was
Definitely with your family and Super Bo! Love
Ya girl! Hugs!

Port!

I don’t have a lot of time, here is what we know! Yesterday we came to¬†KU to get Bo port flushed and it was not flushing all day, they sent us to infusion to try to get it unclogged that didn’t work, at 7 last night we had an X-ray and went home! At 9:00 the dr called and said we needed to get back to the hospital because Bo port has broke apart and the tubing is in his pulmonary artery!!! So we are heading into surgery to see if they can fish out the tubing from my sons heart!! Please please pray that they get it or if they can’t they will transfer us somewhere that they can! I will update when I can!

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July 25, 2012 - 10:01 am

Jill - Oh Carolyn! Praying for you guys!

July 25, 2012 - 10:57 am

Clarene smith - Carolyn my dear–I will be praying as I have been and know everything is going to be ok. Love you all so much and this baby will be ok.

July 25, 2012 - 11:00 am

Nichole - Carolyn, my thoughts and prayers are with you and your family. Bo is a fighter!

Macan It Happen: Bone Marrow Donor Drive

Get your cheek swabbed, potentially save a life. It’s that easy.

Bo may not be eligible for a bone marrow transplant yet, but at this very moment there are hundreds of families hoping, praying, and willing that today is the day they get the call. That today is the day someone they love very much has a match. Is it you?

Team Macan It Happen is hosting a bone marrow donor drive at Roesland Elementary on Saturday, August 11, from 9-2. While adults get their cheeks swabbed, kids can enjoy face painting and a moonwalk. Everyone who donates (cheek swabs or money) will be entered into a drawing for a Rendezvous Package from The Raphael Hotel. There may even be a few other fun surprises.

Come out, have fun, MAKE IT HAPPEN!

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Life as we know it!

Our trip to Cincinnati¬†was good for the most part.¬† It started out rough. After about 88 miles on the road, Bo was over being in the car.¬† So we had to change-up¬†some stuff, let’s just say we made pretty good timing considering my child.

Monday we hung out, went to a few malls, did a little school shopping.  Our wonderful friends, the Karns, who live in Columbus came down, Monday afternoon and spent their vacation with us!  It was so nice to see them and our kids loved spending time together.  Tuesday we spent the day at Kings Island, even though it was SO HOT! Bo and Brookie only spent a few hours at Kings Island it was way to hot for Bo, so my father in law took them back to the hotel (so nice of him). Johnny and I spent the rest of the day on a ton of rides, then we headed to the water park, while Leksi and John got a fast pass and rode roller coasters all afternoon.  I was a great day!

Wednesday we were up and ready to go, the hospital was about 18 miles from our hotel so we headed out a little early, good thing we did because¬†the hospital was HUGE. I mean HUGE, it was crazy! We got to our room and a few people came in and we talked about the process which my child is now in.¬† The “BONE MARROW PROCESS”.¬† We went over all kinds of things, we got to tour the bone marrow floor, that was scary and very surreal. Once Dr. Marsh came in we jumped right in on our course of action. In her medical opinion said Bo isn’t ready for transplant. He is a very difficult kid medically and she is worried (which we have heard before) that his body will reject the new bone marrow.¬† With that being said, she proceeded¬†to tell us that there¬†is a 20% mortality rate in cases like Bo. Well, John and I are not willing to take that risk right now!

Our plan of action consists of this:¬† 8 months of IVIG (immunoglobulin¬†therapy) which is like a blood transfusion every 4 weeks through his port, except its boosting his levels and his immune system. It will go through his port and sounds like it’s not¬†a big deal- BUT- we have to get insurance to approve it. Don’t even get me started on insurance.¬† Last year from Sept 1-Mar 1, Bo spent a total of 50 days in the hospital which cost them around $749,000. If I were an insurance company¬†I would approve IVIG¬†BUT who knows!?!¬† We will know in a week if it’s approved. All in all his transplant is on hold. It could be 1 month it could be 15 months, only time will tell. I hope insurance approves it quickly, I fear the flu season will be a rough one and I am not ready for that.

These past few weeks have been incredible for me and my family. The support we have received¬†is mind-blowing¬†and pretty amazing.¬† I can’t say thank you enough for everyone’s prayers, support, and words of encouragement.¬† We are so blessed. …

C

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July 23, 2012 - 10:32 pm

Joyce Payne - I am so happy for the whole family that this visit is over and now you all can take a new plan of action. Everyone is praying for all the family. I wish you love and I hope you all will find some peace from what has been decided. Love you all! Joyce

Appointment update

Carolyn emailed last night with an update from Bo’s appointment yesterday.

The doctor they saw does not feel that, at this point, Bo is a candidate for a bone marrow transplant. Right now the doctor feels that Bo’s body can’t handle the transplant and that it’s not worth the risk. They will reassess the situation in 5-10 months but, even then, the doctor isn’t certain that a bone marrow transplant is the way to go. His immune system would potentially be the same after the transplant, he would still have diabetes, growth hormone deficiencies, and thyroid problems. The doctor also said there is a 20% mortality rate.

This news is frustrating, scary and, Carolyn said, some of it was really hard to hear. However, they’re glad the doctor was honest, cautious, and didn’t push for the transplant.

Next up for Bo is Immuniglobulian therapy at KU Med every four weeks until March to try to improve his levels. Once they’re back from Cincinnati, Carolyn will share more details about that process.

On a lighter note, Carolyn asked me to share with you that we will be hosting a Bone Marrow Donor Drive at Roesland Elementary on Saturday, August 11 from 9 am- 2 pm. I have a few plans to finalize BUT! I can tell you that it’s going to be another fun, amazing day with Team Macan It Happen. Put it on your calendar and come get swabbed! Our eyes have been opened to a tremendous need and though Bo may not be eligible for a bone marrow transplant, there are so many people out there who are and desperately need a donor. Details about the drive will be posted on the blog soon!

-kel

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Today is the day!!

So in less then 2 hours we will head to the hospital and get some much needed answers! Please pray today goes smoothly!

C

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July 18, 2012 - 10:40 am

Tracy - PRAYING! You all got this!! Go super Bo! Patiently waiting for any updates ūüôā

July 18, 2012 - 6:51 pm

Amanda McCoy - I love you and your gorgeous family after such a short time. We will be praying for the best!

January 16, 2017 - 11:55 am

Sherlyn - Whoa, things just got a whole lot eaiers.

Bake sale success!

Please check out the piece Justin Schmidt of KCTV5 did about Bo and the Macan family that was on the five o’clock news this evening:

Family, friends, strangers open hearts and wallets to young boy with rare disease

There’s some super cute video of Bo, and interviews with Carolyn, Leksi and Amanda McCoy.

Here’s the story, written by Justin Schmidt

ROELAND PARK, KS (KCTV) -The Macan family of Roeland Park, KS, is heading to Cincinnati, OH, on Sunday to see if their youngest son Bo is a candidate for a bone marrow transplant.

“Hopefully we’ll be able to have a bone marrow transplant to fix some things. He has diabetes, growth hormone deficiency and a thyroid problem, all kinds of yucky things,” said Bo’s mother Carolyn Macan.

Super Bo, as his mom calls him has IPEX. It’s a very rare immune system disease. People with IPEX don’t have a certain type of white blood cell that regulates the immune system. Bo has the only known case in Kansas or Missouri.

“Essentially he has no immune system. They’re hoping the bone marrow will fix his immune system. Getting a cold for him is three to five days in the hospital,” Macan said.

Saturday morning, the Macan’s friends and neighbors held a bake sale, hoping to give whatever support they could.

“The kids really wanted to show Bo they could make a difference too, and not just make it about what the adults do. Really get involved,” said Amanda McCoy, a family friend.

Bo’s mom said she’s overwhelmed that so many people care so much.

“A lady just stopped and handed me a card, it was not signed and it had $100 in it,” Macan said. “I have no idea who she was, but thank you.”

Bo and Carolyn Macan will spend up to 18 weeks in Cincinnati if the bone marrow transplant comes through. Bo’s oldest sister Leksi said she’ll miss her mom and brother, but can’t believe how much her classmates at Roseland Elementary have helped.

“It’s really cool for people to do that for my brother,” Leksi said.

Click here for more information on IPEX syndrome.

Click here to follow Bo’s progress or make a donation through the Macan’s blog.

Copyright 2012 KCTV (Meredith Corp.)  All rights reserved.

Sammie, Amanda, Kellie, Andrea, Heather, Carolyn, Samantha, Lisa, Leksi, Morgan, Leslie, Rylee, and Baylee

Thanks again to everyone who participated in the bake sale. It was a truly wonderful day.

-kel

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July 14, 2012 - 11:55 pm

Amanda McCoy - What an amazing day!

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