What NOT to Say to Parents of Tubies

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**Informative post.  This is in no way directed at anyone in particular.  Many of these things haven’t even been said to my family, some have.  Those who know me know if you say something that offends me, I tell you right away.  This is just meant to be informative to those who may not even know what they are saying or how they are saying it is hurting our (tubie parents’) feelings**

Having twins usually causes a bit of a spectacle when we are out and about, but with Kenedi and Kendal we get a few extra stares and whispers.  I really do understand the curiosity.  It’s human nature.  I’ve spoken to other parents of tubies and together we’ve compiled a list of what not to say to parents of tubies.  This is by no means a complete list, but a list of the most common questions and comments we get:

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One Year

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Bear with me as this is a bit of a long one…

So March 20th marks my one year anniversary of “not working”.  I use the term “not working” loosely since I am working ALL DAY LONG with the girls.  But I mean putting on my BEAUTIFUL work clothes, heels, dressy blouses with blazers and cute necklaces, and going to my office, drinking coffee without screaming tiny people, talking to other professionals, meeting deadlines, typing documents, researching through records and all the things that come with my career.  Prior to cancer, I was a paralegal at a law firm in town.  I’m lucky enough that when the girls are cleared I will be able to return back to work.  That being said, I have no idea when that will be.  The waiting game that comes with cancer and the unknown of everything is excruciating.  I haven’t worked in one whole year.  That’s the longest I’ve gone without working since I was 15 years old.

Many of you know me and have started following our journey after our twins were diagnosed with cancer in August, so why haven’t I worked in a year?  There’s more to the story than just cancer with my little ladies.

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Thank You

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SPRING CLEANING IS HERE!!!  This weekend Aaron and I spent a lot time cleaning out the garage, the basement extra bedroom, packing away all the Christmas stuff, going through last year’s paperwork, filing taxes and all of that fun adulting stuff you have to do.  It’s not always that fun, but has to be done.  In our purge I came across something that made me stop and take an hour (okay 3!) and  go through.  Two giant totes in the twins’ room filled with love.

How can a tote be filled with love you may ask?  Well in these totes there are handmade cards; store bought cards;  typed notes on letterhead;  hand written notes from the elderly; hand written notes from small children; coloring book pages colored by children; notes on post-its, on note paper, on lined paper, on napkins;   messages from churches; prayer books from prayer warriors; prayer blankets; guardian angels colored and strung together crafted by an elementary class that were hung in the girls’ hospital room; posters with signatures from sports teams that were praying and thinking of the girls; trinkets of guardian angels; necklaces for the twins; long letters to me, Teagan, the twins and Aaron; letters and photos from kids who held lemonade stands, or bake sales and donated their money to our family; a card from a family who decided to not have Christmas gifts this year and donate that money to our family; Items not in the totes, but I know were sent and received were donations of $5 dollars and donations of $5000 dollars and everywhere in between; teddy bears for the girls (all 3 of them); dolls and toys for the girls (all 3 of them) clothes; headbands; books; goodies for me and Aaron; I could go on and on but I think you get the picture.

These totes are filled with love.  Love for the twins, love for Aaron, love for Teagan and love for myself.  Some from people we know, a lot from people we don’t.  I spent hours this weekend reading through all of this love.  I sat down and read every single word that was in these totes with tears streaming down my face.  I do not think that I could every express how grateful we are as a family.  How thankful we are to everyone who has supported us on our journey thus far.  I REALLY wish that I could sit down and personally write a special thank you note to each and every person who has supported us with prayer, with written words, financially, and everything else, but that wouldn’t be possible right now.  So this is the best way I know how to show our gratitude.

Thank you to everyone who wrote, donated, prayed, sent positive thoughts and vibes, sent gifts to any of us, donated items to the auctions, donated time to organizing and running fundraisers, donated food for the meal train, donated food from your place of business, donated services (whatever they may be) to anyone in our family and everything else that I could possibly be forgetting.  Thank you to our current community, our past communities, our online communities, and our care team.  Thank you to the strangers that have now become our friends.   Without the LOVE and support we have received from all of you so far, we would not be where we are.

Thank you

XOXO

Abby

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Happy

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Since we’ve come home from the hospital with the girls from their cancer treatment, I get asked a lot of questions which I’m usually happy to answer.  But the question I get asked the most is “I bet you’re so happy to be home!!”  To which I smile and nod.  Or say “yeah, it’s pretty nice.”  The truth is, although I AM happy to be home, I’m not as happy as people think I should be.  Hell, I’m not even as happy as I think I should be.  And I feel guilty about that.

Let me go back and repeat.  I AM HAPPY.  I love being home in my house with my girls and all my things.  I love being out of the sterile hospital room.  I love being home together as a family of 5.  Yes.  I love all of that.  That being said, being home alone all day with 2 medically complex babes that can’t talk but require hours of working with them, is exhausting.  And on top of that, I’m still learning how to be a stay at home mom.  If I’m being honest here, that was never a dream of mine.  I’ve held a job since I was 15 years old so to lose my identity as a working mom, as a career woman, has been a little challenging for me to get used to.

Every morning we get up, start a feed at 6:30 am.  Then hope and pray they keep it down so that at 8:30 when you weigh them, their weight has gone up.  Change diapers, change clothes, clean up any puke, start laundry so puke filled rock n plays are clean for the next feed (this happens after every feed, so, 4 times a day), get them in high chairs, spend an hour working on oral feeds, hook them up to some formula while they are eating, unhook them from feeds and put back in rock n plays for remainder of feed, clean up cereal, baby food mess and clean both high chairs to be ready in 2.5 hours for another hour of oral feeds.

After their mid-morning tube feed and tiny cat nap we do a lot of tummy time and therapies on their belly.  Kendal is doing pretty well in terms of motor development but Kenedi is a bit behind.  Although she can sit up on her own, at 10 months, while on her belly she still won’t lift up her head.  So we spend between 1-2 hours working on the floor, playing, rolling, trying to push our head off the ground, then hop back in the high chair for more food practice, followed by their long afternoon nap.  During this time I get dishes done, laundry done, everything cleaned up from the morning, any other cleaning that needs to be done, phone calls and appointments set up, ordering of feeding supplies, calls to our dietician with updates, etc., (sometimes I can sneak in a 30 minute workout here if they sleep long enough!) and start dinner for the rest of the fam.  And I do all of this usually without speaking to anyone except the girls.  Yes, therapies come into the house a few days a week which is awesome, but most of the time it’s just me and the twins.

When Aaron and Teags get home it’s usually busy with dinner for us 3 and then a different dinner for the girls, cleaning up, showers or bath if necessary, some quality time with Teagan before she goes to bed at 8, some play time with the twins for her, then Teagan’s 30 minute bedtime routine (PLEASE tell me this gets easier with her age – she’s such a staller right now!  “I have to go potty”  “I need a drink”  “I need another hug” “I wanna cuddle”  “mommy I love you”), then get the twins ready for bed and their final feed started between 7-8, clean up any puke and change them after, then put them in their cribs at 10 and mosey up to bed myself.  Also thrown in here throughout the day are all the different medications the girls are taking, each one taking a different dose of each med.  I have so many alarms set on my phone these days that I don’t even remember what they are for when they go off until I read the note I’ve written for it.

**I just want to note in here, hats off to stay at home moms who do it all.  Seriously, you all are my hero!  Teagan goes to daycare and I can’t imagine throwing her into our mix during the day**

Not only am I dealing with a new life at home, I’m dealing with the grief of losing my old life.  I’m grieving the loss of my twins’ infantile months, years.  I’m grieving the loss of their health, the loss of a year of Teagan’s life being normal, the loss of my normal life.  I’m learning how to live in the now, very different world.  Not just the cancer world, but the life after cancer world.

I also kinda miss the hospital a little bit.  I miss the comfort of those 4 sterile walls, the comfort of being able to push a button and get help whenever necessary.  I miss having the ability to take a shower without worrying if someone was pulling out an NG tube, puking everywhere, or screaming their head off while I was in there.  I miss the conversation with our nurses.  I’ve said it before but our team became our family and I miss seeing them every day.  They went through the hardest days with us and they understand me.  Understand the girls.  They understand when I say that I’m frustrated about their eating and they wouldn’t judge if I told them “I was crying again because the girls wouldn’t take their bottles.”  They wouldn’t judge me if I told them that “I just needed a minute to myself because the whining is driving me crazy”.  They understand the demands that come with taking care of the girls and their medical issues.  And they would understand if I told them that even though I am SO HAPPY and blessed that my girls are doing relatively well, I’m just still mad that they aren’t “normal”.  I’m mad that they won’t drink from a bottle.  I’m just mad that this happened.  And I’m sick of being patient waiting for these lasting chemo affects to wear off.  They would not judge me and they would understand.

Me and my crew <3

Me and my crew <3

I am so blessed to be able to stay home with my girls.  I’m so grateful to be able to do that and to work them constantly to get them back up to speed developmentally.  I’m not unhappy about that at all.  All I’m saying is please don’t judge me when my response to the question/statement “you must be so happy to be home!” isn’t an overwhelming “YES!” because it’s just hard.  But then again, what part of parenting is easy?

XOXO,

Abby

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10 Months

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The girls turned 10 months old yesterday.  10 months.  I can’t even believe it.  We are fast approaching not only most time spent out of the hospital than in during their little life times, but also their First Birthday.  Stop. It.

Both girls are doing very well.  They have VERY different personalities that have blossomed since being off treatment.  They both have two bottom teeth which all came in at different times….two teething babes is it’s own form of torture!  Both girls are also sprouting hair and I’m obsessed with it.  I can’t wait to do pony tails!!!

Kendal is our chunky baby weighing in over 17 lbs.  Her nick name is “chunks” or “chunky monks”.  I love her baby rolls.  She sits on her own like a champ and just in the last few days can bear weight when in the crawling position.  She is a talker.  And DEMANDS you pay attention when she’s talking.  She also is making huge strides in the eating department.  She’s taking baby food SO WELL and just today we found a sippy cup that is working for her.  She’s not good at it yet, but I’m convinced with practice she will have that tubie gone soon.

Kenedi is our “peanut”  (because she weighs 14.5 lbs) or “lovey dove”.  She is so calm, cool and collected all the time.  She has the sweetest demeanor and will offer you a smile whenever you need it.  She is getting much better at sitting on her own but still despises tummy time.  She refuses to lift her head while on her tummy but that’s something we are working on!  She doesn’t talk much but definitely observes everything around her.  Recently she started blowing raspberries as her mode of communication or attention seeking.  Her fine motor skills are very impressive and she will examine a toy for hours.  She hasn’t been eating very well lately but she has been battling a double ear infection.  Today she seems MUCH better and I’m excited to start up with trying some food again tomorrow.

I have started planning their first birthday party, which is also their golden birthday and I am so excited!  I cannot wait to celebrate with them.  I think if anyone deserves an over the top gold party, it’s these two little survivors!

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The girls are wearing Love Your Melon hats in this photo (Kendal on left, Kenedi on right).  Please check out their website and their cause.  Such a wonderful organization!

XOXO,

Abby

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Being Selfish

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“Health is not valued until sickness comes”

I’ve been struggling with the best way to go about this post for a few weeks now and each time I keep deleting everything I write.  You see, I’m nervous.  I’m nervous to be vulnerable and put myself out there to be judged and criticized regarding my life and my health and my journey.  So I’m just going to do it.  I’m going to bite the bullet and share my story because I truly believe that if sharing my story can help one person, then it will all be worth it for me.

When the twins were diagnosed with cancer, I was in the early stages of training for my third half-marathon.  My first one since having the twins.  It was August and I was up to running about 5 miles at a time.  I had also started eating healthier again.  Not super healthy, but healthier.  During my pregnancy, Kenedi had IUGR so in order to get her to gain as much weight as possible, I was told to eat whatever, whenever.  “Can I get that in writing?” I asked, as I indulged on velveeta mac-n-cheese, endless pizza, ice cream and cookies.  I also was drinking 3 boost protein shakes a day and ended up gaining 65 pounds (The twins only weighed 7.5 pounds at birth combined so that was a lot of extra weight on my body!)  I was back on the healthy living train when our family was smacked in the face with a cancer diagnosis.  Times two.

We were quickly whisked away into the hospital living world where food is EXPENSIVE and GREASY.  Not only were we not able to cook for ourselves anymore, but we were at the mercy of what was being served in the cafeteria.  Which was a lot of pizza, tater-tots, mac-n-cheese, fountain pop, cheese curds, French fries, chips, candy, etc.  We also were left to deal with funny cafeteria hours.  It was open from 7:00 am to 10:00 am; 11:00 am to 2:00 pm; and 4:45 pm to 7:00 pm.  This didn’t always line up with the girls’ schedules so we were often left with no options at 9:00 pm.  So what did we do?  Ordered out pizza of course.  I think the first month in the hospital we probably ordered delivery pizza at least 3 times a week. I was gaining back all that weight I had just started losing, and gaining it back fast.

On top of eating all this junk food, we weren’t getting any rest.  We would get to bed after 1:00 am and be up at 3:00 am for a feed and then up at 6:00 am for a feed and then up at 8:00 am for rounds and nurse shift change and sprinkle in some other random times fussy and/or puking babies.  Most nights during round 1 of chemo, Aaron, bless him, would sleep in the rocking chair holding Kenedi because that’s the only way she would sleep.  If we barely had time for sleep you can bet we didn’t have time to work out.  Plus, it was so hard to even leave my girls in the room to just go get food.  I would feel so guilty just doing that, so I couldn’t make myself go get a run or workout in.  At the time, I just wanted to be next to them at every possible second of the day.  But it quickly started wearing on me.

So, there I was, eating crap food at all hours of the day/night, sleeping 3-5 hours a day, and not exercising a bit (one day I got 3000 steps on my fitbit.  Only 3000!)  Something had to change.

I think it was in September that I started back up in a 21 day fix bootcamp with my friend Amber.  This was a game changer.  Although I didn’t go in hardcore my first round, I noticed a difference in how I was feeling.  I started being pickier about which foods I took at the cafeteria, I also got myself a mini fridge and a mini crock-pot and went grocery shopping.  I started going for runs here and there (this happened after becoming more comfortable with the nurses).  I began getting into a routine and slowly but surely I started feeling better.

On top of incorporating healthy eating, I started working out right in our hospital room.  With the 21 day fix workouts you don’t need much for room or equipment (a lot of the time I just used my body weight) and they are only 30 minutes.  I also started drinking Shakeology which was SO handy when living in a hospital.  By doing this I was able to eliminate one meal I had to eat from the cafeteria a day.  I eliminated one meal that I had to try to find time to make.  After about 2 months of getting back on track, I felt so much better.  I was able to stay up those long nights when one or both of the girls were fussy and not be dragging the next day.  I was able to stay calm during stressful situations and not get frustrated as quickly when things weren’t going our way. I wasn’t groggy and exhausted all day every day.  Not only was I feeling and looking better physically, but I was feeling better mentally.  Living in a hospital with twins who are going through intense chemotherapy is not an easy task.  Being able to spend 30 minutes a day on myself to clear my mind and take out my stress on a good workout was so necessary.  I realized that I needed to take care of myself in order to take care of my girls to the best of my abilities.

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Left is the day our twins were born; Right is me in November which was in the middle of treatment for the twins.

In November I decided to take the leap and become a health and fitness coach with Beachbody and I am so glad that I did.  I know that if I can reach another person who is struggling like I was to take care of themselves because of how busy they are taking care of everyone else, it will be worth it.  It is because of my girls, all three of them, that I am so passionate about this.  About health.  About fitness.  About taking care of yourself FIRST.  I think that’s something moms and dads and caregivers alike don’t do.  We put ourselves on the back burner to pour everything we have into our kids, whether they are sick or not.  But I’m here to tell you that it is so important to take care of yourself first.  How can you take care of someone when you are running on empty?  You can’t pour from an empty cup.  When you’re at your best, you are able to care for those around you to the best of your ability.

I know some of you may be thinking “hey, this is the blog about the twins and their cancer journey”, and you’re right it is.  But their journey is also my journey.  Their fight is my fight.  I learned so much during our time in the hospital battling this evil beast called “cancer”, not only about cancer itself, but about myself as well.

I have started a facebook page and would love for you to follow me there at Abby Breyfogle Fitness (www.facebook.com/abbybreyfoglefitness) where I post to encourage and motivate all those interested in working on their health.

Today, do one little thing to take better care of yourself, and tomorrow, repeat.

XOXO,

Abby

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*I just want to note that I’m all about a healthy balance for eating.  I still enjoy a cupcake or pizza and wine now and then.  It’s all about balance and healthy choices for me*

 

Scars

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“A scar simply means you were stronger than whatever tried to hurt you”

 

Tonight when I was changing Kenedi the big red scar on her chest caught my eye.  I have seen this scar a thousand times but tonight it caught my eye.  As I sat there looking at her scar and looking at her smiling, I got a little choked up.  That red mark that’s imprinted in my 9 month old’s chest is far more than just a scar.  That scar has a story and although the story has a happy ending, a lot of what that scar represents is pain and suffering.

 

Kenedi only has 3 scars.  She has 2 on her chest from her PICC line and one on her leg from a biopsy.  She had a few biopsy spots on the back of her hip (Kendal as well) but those are so small they are unnoticeable.  Kendal has a few more scars than Kenedi.  She has two on the left side of her chest close to her ribs that are from the NICU.  Since she was born at 33 weeks, her lungs weren’t working properly and she unfortunately popped a hole in one of her lungs.  A Pneumothorax.  This required a chest tube to help pull off the extra air in her rib cage.  She eventually was put on an oscillator to help her breathe.  Thankfully after 7 long days, she was finally tube free and breathing on her own.  She has two more scars on the top of her head.  One from a biopsy while we were at Mayo and the other from the original biopsy.  The one that started it all.  The biopsy that gave us the prelim results that she and her sister had cancer at 3 months old.  That scar haunts me.  Both girls are beginning to sprout some hair and it’s the CUTEST peach fuzz you ever did see.  But that deep gouge of a scar on Kendal’s head is completely barren.  Free from any peach fuzz. It’s a constant reminder, that cannot be covered by clothing, about what they have gone through.  What we have gone through.  In addition to these scars, Kendal also has a scar from her PICC line in her chest.

 

Teagan isn’t free from scars either.  Although she does not have cancer, at one year old she had osteomyelitis that abscessed on the growth plate of her femur.  The largest bone in her body that hadn’t come close to growing to it’s full potential at the time.  She was at risk for her femur to stop growing with this infection without surgery.  She now has about a 4 inch long scar on her left knee.  We do not know the exact origin of Teagan’s bone infection but we are told it can come from something as simple as a scratch.  After 3 different surgeries and a PICC line for 6 weeks, she is (still) infection free.  We are grateful that her femur continues to grow properly and after another 2 years of check-ups, she will be free and clear from her ordeal.

Teagan's scar; Kendal's PICC scar (Kenedi's looks the same)

Teagan’s scar; Kendal’s PICC scar (Kenedi’s looks the same)

The scars I personally wear from each of these ordeals, although are not visible, are quite severe.  I feel as though my soul has been seared with scars.  Each time pain was inflicted upon one of my littles.  Each time I agreed for them to feel pain in order to save their life.  Each time I watched from the sidelines as they were held down for a procedure.  Each time I assisted in holding them down for a procedure.  Each time blood was drawn.  Each time anesthesia was given.  Each time chemo was given.  Each time they puked from treatment.  Each time they cried because they were hungry before surgery.  Each time I waited days for results that would decide the fate of my girls’ future.  Each one of these times I was given an internal scar.  You would think that by this point I would be so scared up that I if you could see these scars on the outside, I as a person, may be unrecognizable.  But that’s the beauty in scars, isn’t it?  They make us who we are.  They give us character and show our strength.  Our weaknesses.  They show our story and explain our journey.  They are teaching tools of what to do and what not to do.  They make us unique.  They make us beautiful.

 

I know scars are a part of life, and all 3 of my beauties have scars that show the difficulties they have faced.  These scars are reminders of how resilient they are.  How strong we all are.  I will be reminded every day by the scars of where the girls have been, but they will not dictate where they will go.

 

XOXO,

Abby

 

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Storm Warning

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*I started writing this post a week ago and just finished tonight – The girls’ check-up last week was good and their blood counts are great.  We are working on feeding and growing for now*

This week the twins have their first follow-up appointment after being PICC free.  Aside from the obvious stress this puts on me, packing up 3 tiny humans, myself, cleaning the house, finishing my homework, and making sure Aaron has himself fully packed and has someone lined up for Ammo pants, is a feat for any mom.  The amount of stuff 3 tiny people need is outrageous!  And of course no 500 mile one way trip would be complete without the weather acting up.  Winter Storm “Kayla”  (hehe, Kayls, I love that it has your name) has forced us to leave earlier than originally planned.  Again, who am I kidding with these “plans”.

The weather isn’t the only thing being volatile at the moment.  Many other cancer parents have used the term “scanxiety” which basically refers to the anxiety they feel before every scheduled scan after remission that check for relapse.  Although the girls’ type of cancer doesn’t require any actual scans, it requires blood work.  Leukemia is typically found in the blood.  If their blood is clean we get to go home another 2 weeks before labs are done again.  Anxiety over until then, right?  Not really.  The girls had an uncommon presentation of their leukemia.  Their blood work, even after diagnosis, was clean.  Blasts never were present in their blood or CNS.  So even when we get the all clear on labs, the anxiety still exists.  The threat is still there and still very real in my mind.  I don’t know if that is something that will ever go away.  The constant fear of “what if the cancer is back”.

When the girls’ were home last summer, before cancer, I used to look at them and all of a sudden be hit with the very real realization that I made two humans.  At once.  It was a crazy thought that was sometimes awesome, sometimes weird, and sometimes kinda freaky.  They were both in there, together?!  It’s hard to even imagine.  Today I have some of the same realizations but they are along the lines of their cancer.  When we are at home playing it sometimes hits me so hard that it takes my breath away.  They have cancer.  Both of them.  At once.  And now they are in remission.  I don’t know if I will ever be able to say they had cancer.  Although the thought of relapse isn’t all consuming, it’s still there.  Almost daily that thought just hits you.  There will be a minute you are just playing on the floor and all of a sudden you feel like you got punched in the gut and there’s no air.   The real realization that relapse could happen.  When that thought creeps in you just pray.  Pray that those thoughts go away, that relapse doesn’t happen (I tell the girls it’s not an option) and start thinking about all the positives in your life at the moment.  That’s all you can do.  Be positive but prepared.  And continue living life to the fullest every day.

I am still going through the phases of grief myself regarding our cancer journey.  I feel that I am on the upward swing of these phases, but over the next few weeks I will be talking about my own personal experience of how I have dealt and continue to deal with grief.  I grieve over the loss of my “normal” life.  Over the loss of my girls’ 6 months.  Over the loss of time we didn’t have as a family of 5.  Writing is one of my coping methods.  I want to say that I did put somewhat of a disclaimer in my last post and I received some messages about how it wasn’t needed and that no one ever thinks I am complaining about my situation.  I wanted to address that.  I know no most people don’t believe I’m complaining (which I am not) but I just want to be very careful of my words and how they can be unintentionally hurtful to those who have lost a child to this ugly thing called cancer.  I never want to complain about being up all night with my girls because I know that another parent out there would gladly be in my shoes if it meant their little could be held in their arms again.  My heart aches deeply, daily, for those people.  Those brothers and sisters.  Moms and dads.  Grandmas and Grandpas.  Those families.  I don’t think a day goes by that I do not hear the news of another family who has lost a little.  And each day I am reminded to be grateful for those sleepless nights.  Grateful that I have to be frustrated with two littles who won’t eat.  Grateful to have to drop NG tubes again and again.  Grateful to make trips constantly back and forth to the hospital.  And I am.  I am grateful.  I am blessed that my girls are here in remission and doing well.  And I will never lose sight of that fact.

XOXO

Abby

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Life After Cancer

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So it’s been a few weeks since discharge from the hospital and about a week since we had our follow up biopsy. NED was cause for celebration, but it’s quickly back to our post chemo reality. And it’s probably not as glamours as you may think.

I want to preface this with the statement that I am beyond thankful and blessed that my girls are here. And I would do everything over a million times to keep it that way. I would stay up days on end to help them in anyway I can. I am by no means complaining. I’m simply writing this post for informative reasons.

Developmental delays –
The girls are doing well. They really are. We had PT and OT evals this week at home and although we don’t have their official results back we were told that their behavior and abilities are appropriate. The fact that they are preemies works against them. Add in 5 months of basically laying around and they are bound to be delayed. But I’m so excited to say that Kendal is babbling, waving, clapping, prop sitting and rolling. I’m also excited that Kenedi scoots along on her back and has some seriously impressive fine motor skills. All of these things warm a mommas heart but then why do I still feel sad. Disappointed. Not in them, just at the whole situation. At this age (8.5 months actual 7 months adjusted) Teagan was crawling all over the place! I know you shouldn’t compare and all kids are different. But if I were to say that I don’t think about their delays and worry about it, I’d be lying.

Feeding Issues –
We also still have NG tubes. I think I hate them more than I hated the PICC. Until this last week, we would hand-tube-feed the girls after first offering them a bottle which they never took. Tube feeding would take nearly 2 hours of sitting there pushing their food in every so often. And 2 hours later we would have to do it again! This affected our play time. In order to not throw up, the girls have to be at an incline during and for a while after each feed. So they would sometimes get an hour break between feeds where they could play. A lot of this time they were sleeping.

In addition to the feeding situation causing the girls to miss play time, it was literally all consuming for me. We couldn’t go anywhere, couldn’t make it to appointments without the fear of the girls puking. It felt like the girls were always feeding. And pushing that damn tube gave me a blister after a while.

We met with a dietician last week and made a plan to start using a pump now. We were very against it before because we were in control of their feedings with doing it by hand and hopefully by going slow enough that they wouldn’t puke. With the pumps you have less control. We were avoiding puking not only because we wanted them to gain weight but mainly because we wanted to protect their PICC lines. When the dressing would get wet, you would have to change it immediately. Now that their PICC lines are out, if they puke it’s not that big of a deal. So we opted for the pumps. They have been a game changer for me, allowing me extra time in the day when the girls are hooked up. During this time I can get chores done. But it doesn’t change the fact that the girls are missing play time and tummy time and that they still aren’t eating from a bottle.

Helmets –
I personally am in love with their helmets. I think they are so cute! But they are a small pain. And boy do they stink! On the plus side, Kendal’s head is already really starting to round out. The girls don’t even care that they have them on and I’m hoping in another month they will both be done with them.

Medications –
The girls aren’t on a ton of medications but they have a few. Because their immune systems are still low they are on a preventative med for bacterial infections. They will have this for a few months yet. They are also on a medication to help with the emptying of their stomachs to try to combat the puke. And they are on Prevacid for reflux. Only 3 meds isn’t that bad. But sometimes it’s a bit overwhelming when each babe gets a different dose at a different time and you’re running on 2 hours of sleep. Thank you, iPhone, for all the reminders that pop up for me! I will be so excited when we are off all medications.

PTSD –
During our treatment I read a lot about cancer parents having PTSD after going through treatment. I have not been diagnosed with this but I will tell you that my anxiety is often off the charts. I sometimes wake up thinking we are still in the hospital and we missed a med or someone pulled out a tube or someone isn’t breathing or someone has a high fever. I still have a hard time buying clothes for the next season for the girls just in case we don’t get to that season. Morbid I know, but I’m being honest here. Making plans further than a month out is difficult. It feels like I’m tempting fate by thinking everything is good now or when I say “yeah the girls are doing great!” This is not an invitation to make things not great. The panic and anxiety are real and it’s not fun, but I’m working through it.

Follow-up appointments –
The amount of follow up appointments a cancer kid has is overwhelming. Just at our last visit to Mayo we had helmet appointments (a few to make sure the fit was right), appointments with PT, dietician, surgery, hematology and oncology, and OT. Our trip was 3 full days of appointments. With two babes each appointment takes even longer. The next time we go back we will meet with the same people (minus surgery) but add in GI doctors and labs. At home we visit the chiropractor, OT, PT and speech, weight checks, and birth to three. Every 6 months we will have cardiology appointments as well. As I stated I’m not complaining. I’m grateful that we are being followed and taken care of, it’s just overwhelming.

Teagan –
My spunky little diva is going through some issues of her own related to our return. Her behavior (as frustrating as it may be) is normal. She’s acting out by whining all. The. Time. She wants attention you can tell. We have made a point for me to take a day each weekend with her for mommy daughter day. We also try to stay consistent with our discipline and her schedule. She is testing us at every turn. I know in time it will get better. And she is seriously such a joy and is hilarious when she isn’t throwing a fit. She loves her sisters and is so excited every evening to play with them when she gets home and that warms this mommas heart.

Marriage –
I will tell you that for 6 months Aaron and I felt like single parents. The stress we each felt in our own different way was unimaginable. We would often argue about “who had it harder” during treatment. That argument is still the same back at home. Aaron is at work all day, having a grand old time with no tiny humans to take care of (my view) and I’m at home lounging in my pjs playing with the girls all day not doing much (his view). Now we aren’t stupid. I know that work isn’t that fun all the time and Aaron would love to give me a break at home and he knows that I’m not sitting here all day doing nothing at home. It just feels that way. We are working on doing less comparing as to who does what. It will never be fair no matter how you look at it. We are working on learning how to live with each other again and reconnect. To have a conversation about something other than the kids or cancer or appointments or feeding tubes. Marriage maintenance is important in any marriage, but I feel it’s a high priority for us right now.

In all I’m so happy and grateful to be home. I know that soon there will be plans in place for the girls development and eating to get them on track. I will do everything I can to work with them and help them develop and catch up in whatever they are behind in. As for Teagan, I know that loving her unconditionally even through he naughty behavior and giving her boundaries and structure is what I need to do right now.

For all you parents and families transitioning back into the real world after treatment, keep trucking along. Keep moving forward.

For anyone out there who knows a cancer family making this transition, please don’t forget about them. Don’t assume everything is great now that their child is in remission and home. The ripple affect of cancer in a family lasts much longer than the treatment. Please understand that even if us cancer families don’t seem ecstatic that we are home, we are! The transition back to our new normal might just take some time.

XOXO
Abby

Follow me on Instagram @abbybreyfogle

My First Run

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Okay so it’s not really my first run but it’s my first run back home since the twins’ diagnosis. Where everything’s the same but I feel so different.

I ran the same 2 mile route I have taken about a thousand times. Down Captiol to the governors mansion and to the lake. Passing all the same houses. The same cars parked outside. The same sidewalks were un-shoveled. The same cars were blocking the sidewalks. I wore the same running gear. Listened to the same running playlist. I ran by the same schools. Up the same dreaded hill at the end of the run. The same potholes in the streets were there. The miles even took me the same time as usual, but it was different. Oh so different.

For one thing I didn’t have my same running partner, but I have run this route alone before. However, this time I felt so much stronger. Not just physically, but mentally and emotionally. Having a child, or children, with cancer will do that to you I guess. Usually I feel like stopping 175 times out on my runs. I have a love/hate relationship with the sport. I love how I feel after I’m done running, but most of the time during the actual run, I’m miserable. It was different this time.  This time I just ran. Without even caring that my lungs were burning and my legs were on fire up that hill. I didn’t care that my feet were a bit numb from being soaked in a puddle early run.

I did stop to take this photo. I’ve always loved this view on my run and in the summer when the sun is setting behind the Capitol building, it’s gorgeous. It’s one of my favorite things about here. I stayed there for a minute just looking and thinking about how much has changed over the last few months for me and my family. I kept thinking how everything looks exactly the same but I couldn’t get how different it all felt.  Interesting how that happens.  I turned around and headed back home, still deep in thought.

I started thinking about the girls and how much they’ve overcome (all three of them!) Thinking about how they never, ever had one thought of giving up on their fight.  How they smiled through every single hellish day. Which lead me to think about all the times I have wanted to give up and quit smiling when things got hard.  How I often want to give up on the dishes, laundry, clean house. Give up on the babies that sometimes cry about everything. Give up on Teagan when she’s throwing fits. Give up on my health and not exercise or eat right.

But I don’t. I don’t give up.  That’s not what we momma bears do. We may want to 1000 times a day, but we keep going. Keep waging on. And with each experience we get stronger.  And I’m here to tell you that when you do emerge from your own struggle, whatever it may be, the world around you will be the same. It will look the same and seem like nothing ever changed. But you will have changed.  You will have gained strength physically, mentally and emotionally you never knew you had. And you will look back and see the person you once thought couldn’t handle one more thing. The person that wanted to give up and you will be so glad you didn’t.

XOXO

Abby

follow us on Instagram @abbybreyfogle