10 Months


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!


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!



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Being Selfish


“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.



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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*




“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.





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Storm Warning


*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.



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Life After Cancer


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.

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.


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My First Run


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.



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When they told me treatment would be 6-9 months for the twins, I was a mess. Living away from home for 6 months seemed impossible. But we did it. We did it in 5.5 months actually. And its been a week now since the girls were discharged from the hospital for their end of treatment and I still don’t feel like it’s real.

Last Monday we were waiting for the doctors to come in and tell us their new plan. We had been hoping that Tuesday morning we would have surgery to do our final biopsy and remove the PICC lines. I had been DREAMING about life without PICC lines for a while, but as I should have known, plans always change. The doctors came in and informed us that the girls counts were still a little low which made them uncomfortable to remove their lines, just in case they were to need iv antibiotics. They would be more comfortable waiting another week. Ugh! Here we were, so dang close to the end and another set back. Round 4 had so many ups and downs, set backs and was longer than any other round, I was just ready to be done! But that’s not a reason to put the girls at risk.  So we (reluctantly) agreed to wait on removing the PICC lines. We didn’t want the girls to undergo anesthesia twice, so this meant the biopsy would also be postponed. Frustration. We came to the agreement that the biopsy and PICC removal would happen on the 19th since we were going back for helmet adjustments anyway. This meant two more weeks of PICC care at home. Shoot. But then the doctor said it.  “So they can be discharged today then”. What?!?

It was 11:30 am and nothing was packed or organized, Kenedi needed and EEG for some odd episodes she had been having, both girls needed an echo to check their hearts, they needed RSV and flu shots and Kenedi needed site care. We needed to get a helmet scan appointment for Tuesday morning before we left town quick and we had to get to the mayo store (that’s only open til 5 and was downtown – not connected to the hospital). On top of all of that, we had Teagan at the hospital with no one there to help watch her. Oh. M. Gee. We were frantic. Maybe I should say I was frantic. This was not the plan! I didn’t have anything ready! I didn’t have my lists done that planned out what goes in what tote!  (This whole cancer treatment has wreaked havoc on my ocd planning needs!)

Luckily Aaron’s dad and sister were in town so they came by the hospital and grabbed Teagan for us. Since we would be staying the night with them that night, they also took a bunch of our stuff home with them. We then spent the afternoon throwing things into random totes and boxes, loading the car, and trying to get all the girls’ tests completed. It was crazy, but at 6:30 pm, we left the hospital.  For our final discharge. I only cried a little bit when hugging one of our primary nurses. I think that was maybe a blessing of the chaos, I didn’t have time to get upset about leaving all of our new friends. Over this last week I’ve shed a few tears and missed our nurse family often, but we are so happy to be home!

The girls are doing well at home and we are settling back into a routine. Teagan loves everyone being here and it’s such a JOY watching her play and interact with them. Their faces light up when they see her. While at home we still have some medical “to dos”. We have to flush the PICC lines twice a day and make sure they are still working, as well as get labs done twice a week. We also have to do site care on our own. Site care in the hospital with experienced nurses gave me anxiety every week and now Aaron and I are doing it at home like it’s a piece of cake. The twins also have their ng tubes in still but we are working on feeding them by bottle.

It is so strange how the end of treatment feels a lot like the beginning of treatment. The suddenness of it all, the sadness of leaving life as you know it, the chaotic packing up and rushing out the door, the long car ride into the unknown, it’s all so similar that it slightly terrifies me. That’s not all that’s terrifying though. Although I am beyond happy that we are all home together, I would be lying if I told you I wasn’t terrified each and every day of relapse. Terrified that I’ll wake up and one of the girls will have a spot on their body that resembles the original spots from last year. Terrified that the upcoming biopsy will show something bad in their marrow. Worried that they won’t eat from a bottle ever again. Worried that they won’t develop and reach milestones.  Worried about long term effects of the chemo that saved them. I sometimes wake up in a panic that I forgot to flush a line or have a nightmare that the girls have pulled out their lines and they are bleeding in their sleep. And the list goes on and on.

But each morning I am reminded of my little blessings and remember that I cannot live each day scared of what MIGHT happen. I didn’t live in fear before cancer and I shouldn’t do it now. I have been diligent in my thought process during treatment to not allow cancer to steal my joy.  And I intend to keep that line of thinking now, off treatment.

So, I encourage you today friends, to find the joy in your situation. If you’re having a rough day, week, or month, whatever the problem may be, find the joy.  And hold on to it.



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Missing Out


Last night I didn’t get much sleep. And by not much, I mean about an hour. I was pacing the floors carrying miss Kenedi who has been having a ROUGH round (to say the least). She’s been fussy the last few days after a lab error and receiving too much blood for her little body. (She seems to be on the mend today). It was 330 am and I had barely slept. I was silently cursing Aaron who was home comfortably sleeping, in his bed, MY BED, without any kids to be awake with or take care of. And I started thinking about all the sleep I’ve been missing out on. Which lead me to think about all the other things I’ve been missing or missed out on.  And it started snowballing from there.

Yes, I’m missing out on sleep. Tons of it, but what mom isn’t, right? But then I started thinking about my bed, which I haven’t slept in since last January. Almost an entire year.

I’ve missed out on work (tons of work!) and professional development. I have only worked 3 days since March. That’s hard for me, someone who has worked since they were 15. And I love my job. I’ve missed out on my year to be president of my paralegal association, which I was really looking forward to for the last two years

I missed out on the Iowa/Minnesota football game in Iowa! Something we’ve been trying to attend going on 5 years now.

I’ve missed out on attending school this semester which has put my graduation back another semester.

I started thinking about the last 4 months with Teagan that I missed out on. She’s grown into such a beautiful little girl full of imagination and wonder (and questions!) and I missed it. I even missed a birthday! Let’s be honest, though, that was harder on me than her.

I’m missing out on last dinners/runs/workouts/wine nights/play dates with one of my best friends who is moving far away (way too) soon.

I’m missing out on date nights with Aaron. Something we so terribly need. Not even date nights, but just conversations with him about something other than the twins’ cancer, treatment or about Teagan’s schedule would be so amazing.

The list goes on, but as you can see, I was in full blown pity party mode for myself. At 4 am. Kenedi finally fell asleep around 430 and I started thinking about the other side of the coin. Something I force myself to do often.

“Look at all the things you HAVEN’T missed, Abby”.

I got to witness the first time the girls rolled over.

I was there when they ate cereal for the first time.

I was there when they first smiled and belly laughed.

I was there when they got their first tooth.

I was there when they were sick and needed me and when they got better.

I was there for tummy time, music therapy and PT day in and day out.

I have been able to watch them grow, every single day. Not everyone gets to do that!

My point is yes, I’ve missed out on so many things the last 4.5 months that its just not fair. And sometimes, I get pretty mad about it. But where’s the joy in that? What good will dwelling on all the negatives bring other than making me a resentful mom and person? When I look at the big picture, it really isn’t so bad.  My girls are here and smiling and laughing. Even on the bad days.  And on top of all the firsts I’ve witnessed, I’ve had quality time with my girls that I never would have gotten otherwise. And that is something I wouldn’t trade that for the world.



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I’m Fine


People often check in on me and ask how I’m doing. My typical response is “hanging in there” or “I’m fine”. One of my favorite movies, The Italian Job, had a definition of the word fine that has always stuck with me. It stated that being “fine” meant that you were actually “Freaked out, Insecure, Neurotic and Emotional”. I can’t think of a better way to describe how I’m doing.

Over the last week, a lot has happened. Kenedi got an infection in her blood. Ecoili. She was on antibiotics and they did their job; however on Thursday I witnessed her have an episode where at first she was just shaking and something seemed off. But then I handed her to our nurse and that’s when her hands, feet and around her lips started turning blue.  I can’t describe the fear that came over me then. Two doctors were called in but thankfully she pinked herself back up without assistance. Her heart rate was still high so we were on high alert all night for any change in her condition because that would buy us a trip to the PICU. A chest and abdomen X-ray were done as well as a CT the following day to rule out neutropenic colitis. Everything was clear and it was deemed just an episode.

Kendal spiked a fever last week as well, but never grew anything from her cultures. We ended up checking her for cdiff (which was negative!!) because she had some blood in her diapers. It wasn’t in her stool so it was a little perplexing. After the negative cdiff they chalked it up to mucositis in her colon. No wonder she screamed when we tried to practice prop sitting. Also, Friday morning when I returned from Kenedi’s CT (which was beyond nerve wracking being out of our heppa room while her immune system is at 0!) Kendal was sleeping nicely finishing her feed with our nurse. All of a sudden she started vomiting. And there was blood in it. And then the blood started coming out of her nose. I had stayed calm all week until this point but I couldn’t hold back tears anymore. Things just felt like they were falling apart and I couldn’t keep up with the issues both girls were having. We got Kendal cleaned up and checked out and it determined that she had a bloody nose due to low platelets and it drained into her belly which caused an upset belly and caused her to puke. Okay. Not serious, but terrifying in the moment. She got platelets that day and hasn’t had issues since.

And our newest situation is Kenedi’s picc line. The girls were too small for hickman lines in the beginning so they have double lumen PICCs that are tunneled and stitched into their chest. They got them over 4 months ago which is quite a long lifetime for a picc. They aren’t as long term as other lines but due to their size at admit, it’s what we could do. All last week Kenedi’s picc had been being difficult. We checked X-ray a few times for placement and it seemed in the correct place but it wasn’t getting a blood return easily. We tried to use TPA to break up any clots there may have been but it wasn’t helping. Today we were told to immediately stop everything going into her line as it needed to be replaced right away because it had moved significantly. Now my tiny peanut will be going to surgery while her counts are at 0 – another trip out of our heppa room – to get a new Picc line just a week or two shy of when we will be getting them removed, for good.

I posted earlier this week on my private page how I am, or at least usually try to be positive about this whole situation because I do not want to fall into the downward negative nelly spiral. I will not allow myself to do that, but, this week I’m just feeling defeated. There’s no better way to put how I feel than Fine.

Freaked out that Kenedi has to be out of our protected room for surgery. Neurotic, because really let’s face it, this whole cancer thing  makes you feel unstable and on the edge. Insecure because my judgement is always being tested. Every decision I make a second guess. “Should I allow a ct?” “Does her breathing look labored?” “Should we stop Ativan?” And on and on. And emotional because, well I probably don’t even need to explain that.

I don’t know if this last week has actually been worse or just seemed worse because it’s the holidays and we are at the end of treatment, but either way it’s been the hardest on me and my nerves. I am thankful for Aaron being here so that I can have some time out of the hospital room. The constant worrying never goes away, but I suspect that it never will.

I am praying for an easier week after today so that we can enjoy some downtown and the holiday.

As always, thank you all for your continued support!!




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Emotional Roller Coaster


Wow. Round 4 has begun. Finally. And the days leading up to the beginning were intense and emotional to say the least…

I’ve said it before and I’ll say it again, my new motto is “the plan is to not have a plan!” Every time we make a plan it’s foiled by something. Leaving me to feel that I am not in control of anything and I’m still stuck on this crazy roller coaster ride, not allowed to get off.

One week ago we loaded up the car and left, a day earlier than planned – due to a snow storm – and headed back toward Mayo to begin round 4 of chemo. Thursday afternoon the girls we re-admitted and situated into their new home for the next month-ish. The plan was to undergo their bone marrow biopsy Friday morning, get the results Friday afternoon, and begin chemo Saturday morning. Aaron would be staying with the girls during this time while I took Teagan home for some much needed mommy daughter time. In addition to the time I wanted with Teags, I just needed a break. A break from the hospital. From the vommit. From the stress. From the cafeteria food. From the fishbowl living. From everything. During my time at home I would hang out with Teags and get everything ready for the holidays. Hermey, our elf, was on his way, the presents needed to be wrapped, and the house needed a little organization from mom. But our plans were drastically changed Friday afternoon.

I posted to friends that Teagan and I weren’t coming home due to the snow storm, but that’s only half true. Friday afternoon the doctors told us that Kendal’s results were back and fine, but Kenedi’s weren’t back yet so we would need to wait until Monday to get those and start chemo. To say we were livid was an understatement. We drove 7 hours a day early, skipped thanksgiving and rushed our biopsy all to start chemo on Saturday with the *hope* of being home before Christmas. We were promised that they would have results on Friday. How could they not have anything for one babe but have the results for another. Something didn’t add up so we kept pushing. After a few tense conversations we learned that the doctors were trying to save us from ourselves, but we knew something was up. We were hit with the news. The pre-lim results on Kenedi came back with blasts in her CNS and in her bone marrow. They needed to run further tests to see if this was really cancer relapsing or just immature blasts that sometimes get spit out when the bone marrow regenerates (has happened to Kendal in her blood a few times and nothing ever comes of it).

This was not happening. How could I go home now knowing that Kenedi could have relapsed?! How could Kendal have a clean draw when she and Kenedi have the EXACT same genes/marrow? How was I going to keep my happy face on with Teagan and go on the rest of the weekend waiting in this excruciating limbo? There are no words to describe the feelings that you have while waiting to hear if your cancer warrior has relapsed. It’s different than waiting to hear if they have cancer the first time. The first time it’s usually a blind side. This feels more like a boat that over the last few months you have built and filled with hope and hard work and is now finally sailing, has all of a sudden started taking on water and is slowly sinking. You are desperately doing everything you can to keep it afloat but the feeling of suffocation creeps up and sets in no matter how hard you try to fight it…The wait is awful.

Monday finally came and we waited. And waited. And waited. No news. No answers. The few friends I informed of the situation texted and were also anxiously awaiting news. Nothing. Torture. Aside from waiting for these results, we weren’t doing anything. Which added to the emotions. I could have been home doing all the things that I needed to. We could have left the hospital and spent time together as a family while waiting. Thankfully we still have our Ronald McDonald house room and Teagan and I had our mommy daughter time there. 5 pm came and went and still NO Answers. Which meant another day without chemo. Another intense conversation with our Doctor and we learned that one test came back as all clear but there was one final test – the cytogenetic test looking for the MLL – still out. The plan was finally made that chemo would begin Tuesday, regardless, at 9 pm.

Tuesday morning rounds came and STILL the test was out. I honestly can’t even tell you my thought process the last few days. I can tell you thank God for Teagan and her bright smile. She kept me busy and distracted during this time. Finally at 1 pm Tuesday afternoon, after waiting since 5 pm on Friday, I got the call from Aaron. All clear.  So. much. relief. So many emotions. All the waiting and worrying and stress. Finally gone, for now. We were still good to go.

The last week has been emotional. And I know our ride isn’t over. Not even close. And our plans didn’t go the way we had hoped – by any means. But that’s okay. The girls are starting round 4. So I didn’t get a break at home, I still got quality time with Teagan. I still got to wrap some Christmas gifts while in our Ronald Room. And truth be told, I don’t care how crazy the ride gets. As long as they are still on it with me, kicking butt, I’ll keep hanging on.


*sometimes when the bone marrow is regenerating it tosses out immature cells which can be misread as cancer cells from the initial test. That’s why further testing was done that looks at those cells closer to be sure they are or are not cancer cells. The doctors tried to keep us from worrying for days but like I said – we know too much and pushed them for answers*

**Teags and Aaron returned home today. They could have stayed until Saturday but we didn’t want her missing dance since she loves it so much! Normalcy is important for her right now**

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