Discharged

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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.

XOXO

Abby

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Missing Out

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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.

XOXO,

Abby

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I’m Fine

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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!!

xoxo,

Abby

 

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Emotional Roller Coaster

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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.

XOXO,
Abby

*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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Thankful

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As we approach Thanksgiving you can’t help but notice all the social media posts about being Thankful. It’s the time of year where everyone reflects on the good in their lives and what they are grateful for. I have to admit, as a cancer mom in the middle of treatment with two babes, it is often difficult to see what there is to be thankful for. To not be a bit bitter this time of year because you’re spending the holidays in the hospital is hard. But I will say I am thankful. For many many things, but most of all for my girls who are here, and despite their battle and their illness, they are doing well.

Anyone who knows me knows I’m a planner. A planner who LOVES the holidays. Teagan’s birthday is in December and I usually have her party completely planned by September. As well as most of my Christmas shopping complete. Not this year though. I have to be honest, when we got the girls’ diagnosis back in August, I couldn’t look forward. I often couldn’t even see the end of the day. And to think about the holidays? Well it was impossible. I couldn’t bring myself to buy matching Christmas Jammies or think about what Christmas outfits we would or could wear for photos. I couldn’t think about what Santa would bring for everyone or what kind of stockings I would get for the twins. I just couldn’t bear the thought that there was and still is a real possibility that something unimaginable could happen and I wouldn’t have the holidays with all my girls by my side. This isn’t a thought I dwell on – I prefer to think positive and be hopeful – but it creeps in. It catches you off guard and at times takes your breath away. At night I would lay awake and pray to God that we would make it through the next day. As treatment went on I would pray that we would make it through the week, and so on and so on.

And here we are today. Three out of four rounds down. Thursday we begin our fourth and final round of chemo. Although we are not out of the woods yet and still have a lot to worry about – staying infection free during flu season being the most stressful thing – I am thankful for how far we’ve come. Thankful that on Thursday, even though it’s one of my favorite holidays (there’s no better place to be than my Aunt Tammy’s or Aunt Heather’s for Thanksgiving dinner!!) we begin round 4. Thankful that there is treatment for my girls. I am thankful that we are here and moving forward. I am thankful that I have been blessed with my girls who are stronger than I could ever be (all three of them!). I am thankful I have been blessed with a very patient, loving husband. I am thankful for my family who has been so supportive during this time. I am thankful for my friends that have stepped up and helped out whether it be organizing fundraisers or keeping Teagan overnight when necessary. And I’m thankful for all of you, who have rallied around and prayed for our girls.

So on this Thanksgiving, even if you’re feeling there is nothing to be thankful for, I promise you there is. Find it and hold onto it as tight as you can. I know I’m going to.

XO
Abby

Follow me on Instagram @abbybreyfogle and @Twice_The_Fight

To My Children’s Nurses

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My family is unfortunately familiar with hospital living. I was very sick after having Teagan and she was born at 34 weeks and in the NICU. At 14 months old Teagan got osteomyelitis that settled in the growth plate of her femur and she had two surgeries (4 total sedations including a picc line placement and MRI). I was placed on hospital bedrest for 3.5 weeks before the twins and the twins were in the NICU for 30 days and now cancer. I will say that throughout all of our hospitalizations there have only been a few (less than 5) nurses that we didn’t get along with. Was it a clash of personalities? Possibly. Were they having bad days? Maybe. Were they not paying attention to what they were doing and it made us mad? Sometimes. But overall, our nurses have been exceptional.
Our hospitalization for cancer with the twins has led us to meet more fantastic people, most of them our nurses. Now, it may be shocking to some of you that I can sometimes be perceived as “bitchy” (me?!). Add in a little stress sprinkled with lack of sleep and basically I’m the old step-mother from Cinderella and the nurses are Cinderella! (Not really – I do not boss them around, no hate messages please).  Full disclosure, I have lost my cool a time or 6 on my nurse and not because they did anything wrong but because things that were out of either of our control happened. And in those instances they have always handled me with respect and kid gloves when I was most fragile. They understand that I’m not yelling AT them but rather the situation. (I always apologize!!)
Our nurses are there to answer constant questions about what they are doing, what med is being hung, how long should it last, is that a rash, do we have to do cap changes, did you wash that, don’t let that touch the floor, are you sure you washed your hands, is that the right med, is that the right baby for that med, and any other crazy question you can imagine.
Our nurses are there day in and day out.  They are there when someone spikes a fever in the middle of the night, when the girls are puking feed after feed. They are there holding the girls down for procedures or for site care (and to cuddle them after). They are there for chemo and blood draws and antibiotics. They clean the girls up from vomit or explosive diapers. They are there for the pain cries and the itchy rashes. They advocate for the girls when there is a difference of opinion between the doctors and myself. They are there when the girls are happy and playing. For when they rolled over the first time and for when their counts came up. Our nurses have sat in a rocker rocking one of the girls all night so I could sleep. And have sat staring at them making sure they are breathing okay after a heavy amount of pain medications. They wash our clothes and help with dishes. They do all of these things to help take care of the girls, but I want to thank them for even more.
Our nurses have become a part of our story. A part of our family. They have sat with Aaron and I for hours talking about our lives, about their lives. They have kept me company when I’ve been lonely. Forced me to get out of the hospital when I needed it. They can tell if I’m having a rough day and do whatever they can to help make things easier on a mom who is fading.  I can tell they truly care about the girls, when the girls have a tough day, so does our nurse.  They celebrate our milestones and assure me it will be okay when we hit a low spot.
We are still in the trenches of our journey, but long after we are done with it, the nurses will still be a part of our family. I will never forget the friends I’ve made here and the people I’ve met. They have impacted our lives with their patience and kindness more than they even know.
So, to my children’s nurses, thank you. Thank you for putting up with my OCD momma-bear behavior, for answering my constant barrage of questions, for allowing me to watch you like a hawk without being a tad bit nervous, and most of all thank you for taking care of my babes like they were your own.
xo – Abby

Round 3 Sucks

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I have made it part of my mission to stay positive during the girls’ chemo treatment (that doesn’t mean I haven’t had breakdowns, because let’s be real – they are unavoidable in this situation) but I have tried to keep a level head and attack each obstacle as they come at us.  But there is just no other way to put it and I am just going to say it.  Round 3 sucks.  Not that you can ever truly prepare yourself for chemotherapy treatment because there is a whole host of side effects that could happen at any given time during any given round of chemo; but with 2 rounds under my belt, I felt confident coming into this round.  But that’s the way life happens isn’t it?  It’s just like the universe to smack you down when you’re just starting to get back up.

The girls began chemo last Wednesday night and the effects were immediate.  They quit eating from a bottle right away and the vomiting began.  Oh the vomit!  On top of that, on Thursday Kenedi began having real difficulties.  Scary difficulties.  When I got her up at 6 am, she was fussy and I knew from her behavior she was going to spike a fever very soon.  Sure enough by mid-morning, her fever hit and cultures were taken.  Antibiotics were held off because her counts were so high still.  We noticed around noon her breathing was a bit labored.  The doctors checked her out and she seemed fine.  A few hours later she began retracting when she was breathing which is always worrisome.  A chest x-ray was ordered, completed, and clear.  Of course this was starting to become a bit confusing and concerning.  On top of the labored breathing, retraction and fever, she had a resting heart rate in the 200’s, sometimes 220’s.  And this is when she was sleeping!  Around 8 pm when we picked her up to do a diaper change, she screamed like I never heard before.  Every time we touched her, she would scream and cry.  The night team came and checked her out and decided to start her on oxycodone.  One of the side effects of one of the chemo drugs is severe bone pain (makes sense since we are killing all their bone marrow L ).  Since her chest x-ray was clear and nothing had come from her cultures yet, they chalked everything else up to pain.  After starting the oxy, she slept very well.  However, it caused her to sleep so well that her O2 level dropped significantly into the low 80’s.  Because her stats condintued to decline, she was started on blow by oxygen which is just oxygen blowing toward her direction to help keep her O2 level high enough.  During all this, Kendal was doing well (besides the typical vomiting) until she cut a tooth!  Boy was she fussy!  We started her on Tylenol and she started to feel better.

Saturday I felt we had everything under control and everything was looking up.  Sunday afternoon, however, both girls developed a rash.  And different looking rashes at that!  After a full work up of vitals, and overview of every red spot and bump, it was concluded that again, this is just another joyous side effect from one of the chemo drugs.  I was told to just watch them closely and treat them with Benadryl.

This morning was the last dose of chemo for this round.  Now the waiting game begins.  Waiting for their counts to fall and recover all the while waiting anxiously and praying that they both continue to remain infection free.

Although I have been feeling down during this round, despite all the puke, meds, rashes, toxic chemicals, x-rays, labs and oxygen, the girls as always, continue to fight like rockstars.  Even while in pain, Kenedi manages a smile here and there.  And Kendal’s constant babbling is music to my ears.  That smile and that chatter is why I keep pushing on.  Through all the crap, through all the tests, through all the bad days, I keep moving forward.  The girls keep moving forward.  Because, like I’ve told them a million times, that’s the only option we all have.

xo ~ Abby