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

Holding my breath…

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I know it’s been a while since I’ve posted anything.  It’s not that I haven’t wanted to but it was recently brought to our attention that the girls’ photos were stolen and used inappropriately.  It really turned me off to the social media experience; however, I know that once photos are put out there on the web, they are fair game for people to use how they want and after long discussions with friends and family, again, the good outweighs the bad, and we are back.

Round 2 is now complete. The girls did well.  I’d like to say very well, but that makes me nervous. It makes me nervous that they have responded the way they have to the chemo so far.  It makes me nervous to say that they haven’t gotten mucositis or c-diff.  It makes me nervous that Kendal went the entire last bout of being neutropenic without a fever.  It makes me nervous that the only fever Kenedi got resulted in nothing on her cultures.  These are all positive things, yet they feel negative to me.  In speaking with many other cancer moms, I have heard over and over how “this will happen and it will be bad”.  Yet the girls continue to prove everyone wrong.    I often think “don’t even think about the good things because then something will eventually go bad”.  That’s what childhood cancer does, it tricks you into not enjoying the positive, happy moments, and makes you believe there is always something bad coming around every corner.  But I won’t let that stop me from telling you, the girls are doing well, and, we are even currently AT HOME!

Last week I was shocked to find out that both girls’ numbers jumped significantly and on Wednesday I was told “discharge tomorrow”.  What? WHAT?!  We were not expecting this.  Not only did I have myself and TWO infants to pack up and get ready to leave after nearly 60 days in the hospital, but Aaron was hours and hours away at home, and I had two hospital rooms, plus a room at the Ronald McDonald House to pack up.  A bit overwhelming since it was so sudden. We ended up leaving on Saturday after 59 days in the hospital.  To many of you, leaving the hospital and getting to go home may sound like a wonderful thing, but I was scared to death.  After living inside my hospital fish bowl for so long, I was comfortable.  A nurse was a button push away to help with a crying twin, a projectile vomit, an explosive diaper, a possible fever, a funny looking spot that could be a rash, 5 sneezes in a row which could be pneumonia(in my crazy germaphobe mind), etc. etc.  I battled with myself for a few days on whether or not to tell friends we were coming home for a short break between rounds of chemo because I honestly did not want to leave and felt ashamed for feeling that way.  Here my girls are, doing well and able to go home and I didn’t want to.  What gives?  I realized that I was, and am,waiting for the shoe to drop.  For something to happen that isn’t supposed to.  Something that isn’t in my plan. But we left, and we made it home.

Teagan was SO PUMPED to have everyone home under one roof again.  We arrived home Saturday and we are here until Thursday.  Friday we will return to the clinic for check-ups as well as helmet scans L (only as a precaution right now.  It isn’t confirmed that the girls will need them).  The girls will then be re-admitted to the hospital this weekend and Monday will undergo another bone marrow biopsy.  After the results are back from that, round 3 of chemo will start.  Round 3 only goes 5 days this time, but the chemo is 10x stronger than the last two rounds which means the hospital stay could still be quite lengthy.  We pray that the girls continue to surprise us and do well as they have been doing.

I cannot express our gratitude for the support we have been receiving.  I truly believe that the girls have a large army of prayer and thought warriors out there that are assisting in carrying them through this difficult time and making it as easy as it can be on their tiny bodies.  I want to say, however, that although the girls have been doing well, chemo is no joke and we would appreciate your continued support during these next two intensified rounds.

I don’t know if there will ever actually be a time that I celebrate the girls’ response to their treatment, but I hope there will come a time where I can relax and begin to enjoy our time together more instead of constantly holding my breath, waiting for what’s coming around the corner…

The F Word

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Fever. The first memory I have regarding high fevers is from when I was about 8 or 9? And my little brother had a very high fever. I remember being woken up in the middle of the night from him telling me I needed to come hide in the tub because “purple puzzle pieces” we’re after us.

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What is Remission?

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re·mis·sion
rəˈmiSH(ə)n/
noun
a diminution of the seriousness or intensity of disease or pain; a temporary recovery
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I feel like my thoughts are sporadic and jumpy today.  Unoragnized and unplanned out.  Please forgive me as you read further.  I’m having troubles finding how I want to word everything so that it makes the most sense and not give out false information…

Last Thursday the girls had their bone marrow biopsy after completing their first round of chemo.  We were told that results could take up to a week because we were waiting on the MRD (minimal residual disease) results.  Waiting is seriously the hardest part.  The girls counts were up, so we have had a nice time with them, even taking a few little wagon rides in the hall.  It’s been a nice distraction.

Saturday we received some of the results.  When the girls were diagnosed their biopsy of the bone marrow showed 20-30% blasts.  Saturday, our doctor told us that there were 0 blasts present.  REMISSION.  After round 1.  I wanted to shout it from the roof tops, but at the same time I didn’t, because I know we are far from done with treatment.  Much to everyone’s surprise, remission is not the end.  As stated above, remission is “a temporary recovery”.  The girls are not cured.  Treatment is not over.  Yes, remission is the goal, and it’s currently a nice big step for the girls, but we are far from out of the woods.  We were told that they like to see 0 blasts by the time they complete round 2.  Even though we are at 0 already, the girls will still undergo round 2 which is another 10 days of intensive induction chemotherapy.  Exactly like their first round.

After receiving and processing that news, we had more waiting to do.  Waiting to see if the MRD was positive – which would mean a bone marrow transplant was necessary; or negative – which would mean the girls were probably low risk and after round 2 of induction chemo, they could receive less intensive chemo and hopefully avoid a BMT (BMT is still sometimes necessary in low risk, but less likely).  Well, we have that news, and the MRD is negative.  0% on both girls.  This was great happy news.  We took another wagon ride to celebrate.

Round 2 of induction chemo will begin on Friday.  Both girls will get spinal taps and their spinal fluid will be tested again to see if blasts are present (not likely since there were not blasts present in their spinal fluid before round 1 of chemo, but still need to be tested to be certain).  They will get a shot of chemo in their spine as a precaution and Friday night we begin our 10 day journey of intensive chemo again.  This comes with the same terrifying risks of infection as the last round, but includes one more factor.  Flu season.

Flu season can be difficult for healthy children.  Imagine if you had no immune system and caught influenza?  Not good.  Aaron and I have been vigilant during round 1 of chemo that if we left our bubble of a room, we changed clothes and washed up before touching the girls.  Did laundry constantly.  We wiped everything down a few times a day. Door handles, table, crib handles, light switch, thermostat, remote, phones, phone chargers, swings and bouncies, iv pumps, everything.  We even went to the extent of when/if we brought a pop can in the room, we wiped that down.  My hands were raw after our last neutropenic spell from constantly washing, and I expect them to be the same, if not worse, after next round.  Another notable challenge is after each round of chemo, the girls will be at 0 (neutropenic) longer.  The bone marrow gets fatigued and takes longer and longer to regenerate.  This last round Kendal was at 0 for around 17 days and Kenedi around 21 days.  That’s a long time without an immune system.

Following round 2 if the girls respond just as well and are healthy enough, we will hopefully be going home for a week or so.  During this time, I know everyone will want to visit and see us and celebrate the girls, but we kindly ask that you don’t.  I know it’s hard, it’s hard for us, too!  We miss our friends.  I miss my friends and face to face interaction with people over the age of 3 that aren’t nurses.  I get it.  But the girls health comes first.  Next summer we will be able to hang out all you want.  Please be respectful of us during this flu season.

Overall, we, and our doctors, are very pleased with the way the girls have responded to treatment, but also do not want to get too far ahead of ourselves.  There is still a long, tough road to go down, but I’m confident in our little fighters.  All of your thoughts and prayers are so appreciated each and every day.

<3

**Just a small note regarding influenza.  If you are going to possibly be around Aaron or Teagan, who could then spread germs to the girls, please consider getting the flu vaccine.  Please consider getting it in the form of the shot and not the nasal mist.  The mist is a live virus and can be shed up to 3 weeks.  Anyone with a weakened immune system can actually become infected with influenza from people shedding the live virus.

Reset

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Have you ever just wished there was a reset button you could push?  On your day, your mood, a sports game, or even on a workout?  Did your bad attitude affect the outcome of bad situations? Of good ones? Sometimes things just don’t go as planned and when that happens, pushing reset, and re-evaluating the situation can really turn things around.

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Today the twins were scheduled for bone marrow biopsy. Since they are infants they are always scheduled for anesthetic procedures first thing in the morning. They were put on NPO (can’t eat or drink anything) at midnight last night. Well things started to go off the tracks around 7 am. We were told that Kendal wouldn’t even be called down for surgery until 11:00 am. 11:00 AM!!! If any of you know Kendal, you know homegirl gets hangry!  Aaron and I were upset, to put it nicely. Being called down at 11:00 meant surgery around 11:30, for Kendal. And then if they were quick, maybe Kenedi would get in at 12:30.  After factoring in recovery and everything, that would be 12+ hours for Kendal without food and 13+ hours for Kenedi. For babies they’ve been forcing to eat every 3 hours so they would gain weight, this seemed a little counterproductive to withhold food for so long. After having several heated discussions with the nurses and doctors we decided to proceed with the surgeries this morning (or should I say, afternoon) but made it clear that if this happened again, rescheduling would be done.
Thankfully, the girls weren’t too upset this morning and we were called down at 10:45. Kendal went back into surgery at 11:19. They came to get Aaron around 11:50 to be with Kendal in recovery. Usually the anesthesiologists come by 5 minutes later to pick up Kenedi, but after 10 minutes we were still sitting there. Finally a nurse peeked in to tell us it would “be a bit”.  I then learned that the wonderful (and mysterious) scheduler ended up putting patients IN BETWEEN Kendal and Kenedi. How on Earth does that make sense? That’s when I lost it.  There were raised voices, curse words and tears. I imagined I looked a lot like Teagan during one of her terrible two tantrums.  I did apologize to the nurse because I knew it was not her fault but she received the brunt of my frustration. She was sweet and helped me get it together and directed me to the people I needed to speak with to get a better plan made for next time. Finally, at 1:10 Kenedi was called back for surgery and was in recovery at 2:00. After 14 hours without food, she slammed 3 oz in 5 minutes. Most she’s taken from a bottle in a few weeks!
Throughout the day I was texting and messaging friends and family about the ridiculousness that was ensuing and complaining relentlessly. Then it hit me. I need to push the reset button. Yes, everything that was happening was dumb and preventable, but my attitude was making it worse!  (At one point today I refused to answer any further questions my nurse asked because 1. they know the answers to questions like “has Kendal received any blood products in the last 3 months”. Really? We’ve lived here for 30 days and your computer system can’t tell you she’s received 3 bags of platelets and 2 bags of blood. 2.  This delay happened last time we had surgery down there. The same delay! And 3. I was just being a stubborn ass). I realized that none of this was helping anyone!  I needed to reset and adjust my attitude to the situation, stat.
After this realization I fixed my face and thoughts. I calmly spoke with the nurse manager who spoke with the head of pediatric surgery. They all agreed that they need to do better for next time. Because there will be a next time. And a next time. The girls will be having these biopsies often and these delays and issues need to be fixed. Because I changed my attitude from attack dog, overly emotional, sleep deprived momma bear mode, tomorrow we will be meeting with a team to work out a plan for the next biopsy.  To ensure this does not happen again.
As for the twins, they both tolerated the biopsy well, ate like champs after, and have been resting most of the afternoon. We should receive the results from the biopsies late next week and we will create a plan after that. Kenedi’s ANC was 260 today, which is good. She’s getting there. Kendal’s was a whopping 1300!! We are pumped for this and pray that both girls continue improving while we are in this limbo between chemo rounds.

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