After more than nine months of intensive chemotherapy treatments, my 12-year-old daughter is nearly done and the end that had loomed so far ahead as to seem unreachable for so long is finally almost upon us.
I should be ecstatic, jumping for joy, more than ready to resume our ‘normal’ lives again.
So why is it that all I feel lately is numb?
I AM happy – for my daughter, who is kicking cancer to the curb and not looking back. SHE is feeling everything and all of the above that I know I should be as well. And she deserves every moment of joy that the idea of just being a normal almost-teenager brings to her.
And yet, I am exhausted. Physically. Mentally. Emotionally. Spiritually.
I don’t even know if I know how to live a normal life anymore. Is there even a ‘normal’ left once the word cancer worms its way in to your life? The chemo may be almost done, but there’s a lifetime of worry ahead. Maybe someday this will all become commonplace enough that I will find a way to not let it consume me, but now that cancer has struck its way into my family’s heart – twice even – it doesn’t feel like there’s any going back to the anxiety-free, naïve life I lived before.
Hannah has faced cancer two times – and she is incredibly brave, and strong. She is also a pre-teen girl, so there’s no shortage of drama, attitude and eye-rolling as well. She now hates doctors and hospitals with a passion that I can understand, if not endorse. I only hope that someday she’ll be able to reconcile the good they do with the upheaval they have brought into her life.
There is no escape from the fact that for the rest of her (hopefully very long) life, she will always be a cancer survivor. With scans and tests in her future, and the potential for late-term side effects, recurrences, or even a secondary cancer, to emerge at any time.
She and I will both need to learn to live with the newest normal our lives have brought to us. As the parent, my job is to take on all of the worry for her, for as long as I possibly can. I only hope that I am even half as strong as she is, so that I can bear it all for both of us, without breaking.
On January 22nd of this year, an IV dripped toxic chemicals into my daughter’s body for the first time. Chemicals that are necessary to stop any more spread of her cancer, but which ironically could cause additional cancers in her themselves. Or damage her heart. Or her bladder. Or cause other issues that could follow her for the rest of her life.
For six months now, she’s endured numerous pokes, port accesses, tests, blood transfusions, IV drips and more. She’s learned how to drag an IV pole from her hospital bed to the bathroom and back while half-asleep, without blinking an eye. She’s thrown up in the pale pink nausea basins – and in the hospital sink and bathtub, when a basin wasn’t at-hand. She’s lost her hair, her eyebrows and eyelashes – and quite a bit of weight. Foods that she used to love don’t sound good to her anymore and the list of what she will eat keeps shrinking.
Six months ago, these long weeks and months stretched endlessly ahead of us as we tried desperately to understand and accept what was happening. We couldn’t see an end in sight – we could barely think ahead to the next week. We didn’t know how to get through the endless-feeling hospital stays or what to say to the well-meaning, “let us know how we can help!”. We didn’t know what we needed or how we were going to survive what we were told would be a pretty intense 8 to 9 month chemo regimen.
Life goes on, even in the midst of upheaval and cancer treatment. And these months have zoomed by so much faster than I ever could have expected. We’re nowhere near the end yet – only just over halfway done, due to delays and chemo holds, but once we hit that halfway point, I suddenly began to be able to breathe again.
I equate it back to when I had 2 small kids in diapers at once, and my time was spent in a sleep-deprived haze of just trying to make it through the day. And then suddenly you look up one day and realize that those two kids aren’t so little anymore and you don’t have to be in survival mode anymore. The world went on while you weren’t paying as close of attention. Somewhere in there, I think I missed a decade or so of pop culture – I don’t think I could name a song title or movie from the early 2000’s because I was too busy watching 5,403 episodes of Dora the Explorer and listening to The Wiggles everywhere we went.
This isn’t exactly the same – there are no cartoons or singing Australians… But that whole mechanism of being in survival mode just trying to get through the day… That feels awfully familiar right now. Although I think I’ve finally turned the corner from simply getting through the day and am starting to notice the larger world around me again.
Our ‘normal’ has changed, of course – in ways I never could have imagined six months ago. I’m always aware of Hannah – where she is, what she’s doing, how she appears to be feeling… The worry never goes away, and to some extent, it probably never will. I’m more comfortable leaving my other two girls home alone for hours on end than I ever thought I would be with Abbi only being 14. I know most of the nurses on the 9th and 10th floors of the hospital by sight if not by name. We have a routine in place for hospital stays – I know to put the air freshener in the bathroom as soon as we walk in the door when she’s admitted, to try and mitigate the ‘hospital smell’ in there because it makes Hannah nauseous right off the bat. I know where to get my own linens and towels without having to bother the nurses, I can silence an IV pump so the incessant beeping doesn’t drive us crazy while waiting for a nurse to add a bag of saline or fix the tubing. I know that ‘upstream occlusion’ will likely occur at least once a day and that it’s nothing to panic over. I know when the hospital cafeteria opens and closes for each shift change and when hot meals are available versus just whatever’s left over.
I look at the board to see who’s on the floor that we might know and recognize many of the names that I see on a regular basis. The Child Life folks know that they have to make Hannah get up and play a game instead of asking politely because she’ll always say no if given a choice, but has fun when she does get up and about. They know that she’s truly not shy, just avoids talking as her way of coping with having to be inpatient so much. They’ve been known to coax a smile or even a laugh out of her from time to time. Especially when therapy dogs are involved. 😉
This new normal includes a lot of uncertainty – my girls know that when Hannah and I head up to clinic, we may be gone for 2 hours or we may be there for as many as 6 hours. They know that texting is the best way to get a hold of me because my phone doesn’t always get good service up on the 10th floor. They know that when we head up to the hospital for an inpatient stay, we may end up back home if Hannah’s counts are too low. We can’t make long-range plans or look more than a week or so ahead because so much of Hannah’s schedule is dependent on how her body’s handling the chemo at any particular point.
And yet, none of this fazes us anymore. It’s just how things are.
I realized just how far we’ve come when I was talking to another mom of a newly diagnosed Leukemia patient – a friend and classmate of Abbi’s whose family also goes to our church. She is still at the very beginning of that survival mode stage, overwhelmed by everything that’s going on. I remember those days vividly. And I mourn a little for the person that I was back then. I would give anything to never know the feeling of giving my child injections or waking up to the sound of her throwing up in a bucket across the hospital room. But that’s our reality now – as it is for so many other parents at our hospital and all of the other ones across the country and around the world. Too many kids fighting cancer. And too few funds and resources to help find better cures that work, and work without all of the often horrific side effects and complications.
There are five kids (that I know of) who live in our town right now and are fighting cancer. Two are Abbi’s classmates who are heading to the high school this fall. Two are elementary school kiddos. And Hannah, starting middle school. Two of those kids have just been diagnosed this month. One has just relapsed for the third time. The other two (including Hannah) have also had relapses this year.
Two kids we know in treatment at our hospital have no current hope for a complete cure. Another is planning to undergo a bone marrow transplant as her only hope to survive. And yet another has just been accepted into a trial of an experimental treatment that may extend his life – or may not. So much pain, sorrow and worry. My Facebook feed is full of way too many pages of kids fighting cancer, or foundations created in the names of kids who have lost their lives to it.
We are fortunate that Hannah has (so far) not had any major side effects from chemo. She hasn’t had to be rushed to the emergency room with a fever or pain, as so many other kids we know have been. Most days she feels pretty good, just tired. And she’s always cold. Outside of hospital stays, she’s had very little nausea. We are grateful for this and for every day that brings us closer to the end of treatment. For the first time, I really feel like I can actually see an end to it. It’s still months away at this point, but the goal is in sight.
So much has changed over the past six months. I only wonder what the next six have in store for us.
I participated in an Ambassador Activation on behalf of Influence Central for the Boston Marathon Jimmy Fund Walk. I received a promotional item to thank me for my participation.
Six months ago, I had never heard of the Jimmy Fund.
Previous to 2013, I also had the ‘luxury’ of not knowing that research funding for childhood cancer from our government is limited to only 4% and that 46 children are diagnosed with cancer each and every day.
In January 2013, we lost that luxury when our then 10-year-old daughter became one of the 46. You never, ever think that *your* child will get cancer. Not until you hear those words from the doctor’s mouth and your world is never the same again.
Even through surgery and recovery, we still never thought of ourselves as a ‘cancer’ family. It was over and done with, right? Sure, she still went in for scans every 2, then 3, then 4 months but the few days of anxiety and stress were always followed by a hefty sigh of relief when we got that ‘all clear’.
Until we didn’t.
I don’t know the statistics on how many kids relapse with cancer or how many tumors recur or spread, but statistics don’t really matter when it’s your kid. This time, we are living cancer almost 24/7 as Hannah has finished half of her chemotherapy treatments. This coming Wednesday will mark the 6-month mark since her treatments began, so we still have a long, difficult road ahead for the rest of 2015 as well. Every two weeks she goes inpatient for either 2 or 5 nights, with multiple clinic visits and blood count checks in between.
Hannah has been fortunate in many ways. As with her originally knee tumor, this lung tumor was also completely removed with clear margins, and her first set of post-recurrence scans came back clear. She hasn’t had any extra hospitalizations (so far) for fevers or infections. She hasn’t had mouth sores and although her appetite has tapered off, she is able to mostly maintain her weight in between hospital stays. But, she struggles with nausea during every chemo round and the anti-nausea drugs knock her out. She lost almost all of her her hair early on, and for a 12-year-old girl, that’s been extremely traumatic. Nobody, including us, has ever seen her bald head – she even sleeps with it completely covered. She’s received many transfusions to build up her hemoglobin and/or platelets. She’s struggled with bloody noses and fatigue often. We watch her carefully all the time, and she’s had to avoid school and fun events at times because there’s been too much risk for germs to spread.
True, 6 months ago, I didn’t know what the Jimmy Fund was and had only heard of the Dana Farber Cancer Institute in Boston in passing. During this year, I’ve made great strides to educate myself and my family, and to look for ways that we can both support others also struggling against cancer and help raise awareness (and funding) to support additional research to help find ways to eradicate all cancers, for kids and adults. Cancer has touched my family in more ways than one over the past year – in January, my 85-year-old father passed away from Rhabdomyosarcoma (typically a pediatric cancer), only 8 days before Hannah’s chemo treatments began.
Cancer is an evil, ugly disease.
The Jimmy Fund was created in 1948, to raise money for cancer research. The annual Boston Marathon® Jimmy Fund Walk presented by Hyundai is the Jimmy Fund’s largest one-day fundraiser and allows participants to follow the 26.2 mile Boston Marathon course, to raise money and honor those in their lives who are fighting, have fought or have lost their battle with cancer. Anyone can walk on September 27th – and if you aren’t going to be in Boston this September, you can also register as a virtual walker, as I have.
Whether you’re walking in-person or virtually, there are many tools available on the walk webpage to help you fundraise, and there are rewards you can earn for reaching specific milestones with your fundraising as well. Registration for the walk is easy and you can register right online. There is a $25 fee for walking in-person, but registration is free for virtual walkers, who also have no specific fundraising goal. If you are walking in-person, you can use the coupon code BLOG to save $5 on the registration cost!
No matter your walking ability, there’s a route for you. You can walk the full 26.2 mile Boston Marathon course (the Hopkinton route), or a 13.1 mile half-marathon course (the Wellesley route). There are also two shorter routes available as well – the 5-mile Boston College route and the 3-mile Dana-Farber route. All four of the routes finish at the Copley Square finish area in Boston, where you can also enjoy live music and food on the day of the event.
There is a massive need for more funding – for cancer research, as well as for care of patients undergoing treatment. Participating in the Boston Marathon Jimmy Fund Walk, whether in-person or virtually, is a fun and easy way to help raise funds. Ninety cents of every dollar raised goes straight to the Dana-Farber Cancer Institute to support their programs and research initiatives.
I’m registered as a virtual walker – and hope to raise as much money as I can, in honor of both Hannah and my dad, as well as all of the other kids we’ve met who are fighting cancer and the ones who have gained their angel wings. No child should ever have to lose their life to this monster, but all too many do, every day. Even those who survive, often end up with health issues and challenges that impact the rest of their lives – usually as a result of the treatment that saved their lives, not the cancer itself. We need better, updated treatments that target only cancer cells and leave the healthy ones alone. We need better compassionate and palliative care for the kids for whom treatment is no longer an option.
It may not be *your* child whose life is at risk. Or maybe tomorrow, you will be one of the 46 families whose child has just been diagnosed and whose lives will never again be the same.
This post is sponsored by P&G and I was provided with a Walmart gift card as a thank you for sharing this information. As always, all opinions stated here are 100% my own or those of my family.
This year has truly been a challenging one for my family – in ways we never anticipated. When my 12-year-old daughter began chemotherapy treatments in January, we knew that we would be spending a great deal of time at the hospital, which would add a lot of stress to our lives – logistical, financial, emotional… It’s been difficult but also rewarding, to see her quiet bravery each day, through each port access, infusion, blood count check, transfusion and more. She is a fun, quirky, amazing tween – who loves to read, play soccer and volleyball, write stories, spend time with her friends and above all else, just be a normal kid as much as possible.
We are very blessed to have a world-class children’s hospital right here in town, so only have to travel 15-20 minutes each way. We’ve met other families who travel much greater distances for every hospital admission and clinic visit, who can’t bring other kids up to the hospital to visit on a regular basis, have regular visits from friends and family or run home to grab something they forgot to bring. Helen DeVos Children’s Hospital has innovative medical programs and an incredible, caring staff who we trust implicitly to take the very best care of our daughter. The Child Life staff have been especially amazing with Hannah, who tends to shut down and ignore everyone when she’s in the hospital – but the Child Life folks are so good at drawing her out, getting her out of bed and up and around, playing games, meeting other kids on the floor, participating in activities and reminding her that she’s not just a cancer patient right now – she’s still a kid.
During her last inpatient admission a couple of weeks ago, she was convinced to go downstairs to a hospital-wide luau party being held for kids and their families. Hannah and her sisters decorated cookies, played games, got temporary tattoos, snacked on smoothies and cake, and watched hula dancers perform. Hannah was inpatient during the first half of the week at Camp Catch-A-Rainbow, a local YMCA camp that offers a week for kids who have been treated for cancer – she originally wasn’t going to go late and finish out the week at camp, but the Child Life staff went out of their way to help convince her – and she had an absolute blast, made new friends and can’t wait to go back next year.
Our hospital is part of the Children’s Miracle Network (CMN), which works to raise funds and awareness for 170 children’s hospitals all over the US. As anyone with kids in their life knows – at any time, a child you love could become sick, or injured or need medical care of some sort. Or get cancer. In fact according to the Children’s Miracle Network, every day 2,218 kids are treated in CMN hospitals for cancer. That’s not just a statistic – many days, my kid is one of those two thousand. Tomorrow, yours could be. Every minute, 62 kids enter a CMN hospital, for any reason.
This month, Walmart and Pampers are donating $200,000 to the Children’s Miracle Network. If you would like to make a donation as well, you can visit Walmart.com/cmnh for more information. And if you purchase Pampers (or other P&G) products at Walmart, a portion of the proceeds will go to the CMN as well. My kids have all been out of diapers for years now, but Pampers were one of the brands we trusted when they were little, so I love seeing big company like Pampers and Walmart giving back in a way that helps kids everywhere, of all ages.
The infographic below was put together to show why it’s so important to support Children’s Miracle Network Hospitals – and there is some very helpful information there, some of which I referenced above. But the true reason why I support the Children’s Miracle Network, and Helen DeVos Children’s Hospital in particular, is heading back into the hospital tomorrow for her next round of inpatient chemo – Hannah, and every other kid like her being treated at HDVCH or other hospitals around the US.
This is a sponsored post for SheBuysCars on behalf of OnStar. As always, all opinions stated here are 100% either my own or those of my family.
It’s something most of us do every day – multiple times – and yet we very rarely think about the risks.
We buckle our kids up into their (correctly installed) car seats, or watch to make sure they buckle themselves up once they’re old enough, and we breathe a sigh of relief knowing that they’re as protected as possible by those government-approved devices and straps.
Yet, are they truly safe? And do they know what to do if there’s an emergency and you end up injured or unconscious?
Whether a car is parked or moving, there is always potential for an emergency to occur. Vehicles are tempting for kids to play in or on, and it only takes a split second for something to go wrong. One of my most vivid memories as a young child is of my mother panicking in a parking lot because she accidentally locked her keys inside her car, on a hot day – with my toddler brother inside it. I don’t remember how she ended up getting inside – I just remember the emotion as she first reacted to what happened.
Emergencies can happen in an infinite number of ways and it’s impossible to prepare for every possibility – but you can make sure that your kids know not to panic, how to call 911 or press the OnStar button (in OnStar equipped vehicles), how to get a hold of you or another family member, and when it’s safe to stay in the vehicle versus leaving it. This is the reason that OnStar has put together the new ‘Keeping Kids Safe’ eBook for parents and kids to read through together and help kids understand what to do in the case of an emergency.
The 8-page eBook includes both a pre-quiz to see what kids already know as well as a post-quiz to see what they have learned from reading the book. There are step-by-step instructions for how to handle various sorts of emergencies (fire, submersion, etc.) and an emergency information form for parents and kids to fill out together with everything that they will need to know in order to talk to first responders or 911 operators in the case of an emergency occurring with no conscious adult there.
In 6 short months, my oldest daughter will be of age (here in Michigan) to get her learner’s permit and take driver’s education classes. She’ll move from being a passenger 100% of the time to being in control of what really is a dangerous machine. We may or may not feel that she’s ready next January – but at some point she will be, and we’ll need to feel confident that she understands not only how to drive the vehicle, obey traffic laws and be a safe driver, but also what to do if the car breaks down on the side of the road, blows a tire, or runs out of gas. Most importantly, how to stay calm, contact either us or the appropriate authorities, keep away from moving traffic and most importantly to NOT panic. This eBook is not only a good source of information and resources, but also a conversation-starter to begin talking about how to react as either a passenger or a driver when something unexpected occurs.
You can download the Keeping Kids Safe eBook for free, at http://bit.ly/1LiCGqk. Also plan to join in on a very important Twitter party on July 8th to talk about kids and car safety – you could win one of two 2 Emergency Kits with a $25 gift card!
#KeepingKidsSafe Twitter Party
Join us for a conversation about vehicle safety and children at the #KeepingKidsSafe Twitter party on WEDNESDAY, July 8 (note this is NOT the normal #TMOM Twitter Party). RSVP and register to win one of 2 Emergency kits and a $25 gift card on SheBuysCars.com.
This is a sponsored post for Acorn. However, al opinions stated here are 100% my own or those of my family, as always.
Potty training is probably one of the biggest challenges that parents will face – at least in the early years. I remember being completely stressed out over when, how, where and how often my kids went to the bathroom and at times despaired of ever being completely diaper-free. With the advantage of hindsight, six years past our last potty trainer, there really wasn’t a huge reason to worry. Kids eventually get it. Right?
Not always. And especially – not always at night. Daytime potty training ended up being a breeze for two of my kids, the oldest and youngest, once they put really put their minds to it. However, my middle child was stubborn about it and regressed a couple of times before finally being daytime trained. Nights – well nights have been a bigger issue. And for a longer time than I ever thought possible.
For many years, we used products such as Pampers UnderJams – and they worked great. The bed was dry in the mornings and nobody could tell by looking at my daughter in her cute pajamas or nightgown, that she wasn’t simply wearing underwear underneath. Even sleepovers were easier – she simply discretely took care of the used product in the morning. Most often, I’d had a chat with the other mom beforehand and they would show her where the trash was so she could find it easily after waking up.
Nowadays nights are a bigger challenge, for many reasons. She has outgrown UnderJams now, so we end up doing plenty of laundry. And while undergoing chemotherapy, they give her a lot of IV hydration at the hospital when she’s inpatient, so there’s really no way to avoid nighttime accidents. Even kids who are normally night-trained often have issues during chemo – but at least there the nurses are used to this happening and know how to easily deal with it. It doesn’t make it easier to work on nighttime training at home either though, so for now we’re in a holding pattern until chemo finishes later this year.
In general, there are a few things that we’ve found can help at home, so if your child is getting older, outgrowing the UnderJams, and nights are becoming a lot damper than you’d prefer, here are some things that are worth a try:
Avoid drinks before bedtime. I know – this one is kind of a no-brainer. But sometimes you have to look hours ahead and start restricting liquids right after dinner. It’s a challenge when kids are thirsty before bedtime, and this doesn’t work for everyone, or even always for us. But it’s worth a try for the nights that it does make a difference.
Try waking them up to use the bathroom. This is another one that can be hit or miss for us, especially since she’s a very deep sleeper and it takes considerable effort to wake her up enough to get up and go to the bathroom. But, if we make the effort, it will work for a few weeks at a time, so definitely worth a try. We usually wake her up between midnight and 1:00am – this tends to be her ‘magic’ hour where if we catch her then and get her up to the bathroom, more often than not, she’s dry in the morning.
Make sure you have them checked out. There can be physical or medical reasons why a child has difficulty staying dry at night, so make sure you let your child’s doctor know what’s going on and see if any tests are warranted. There are some medications that can help too – not necessarily a good fit for everyone, but maybe worth a try if nothing else has worked. Just do what’s best for you and your family. 🙂
Bedwetting is a lot more common, even at older ages, than I ever knew. It’s something that doesn’t generally get talked about since it can be an embarrassing subject for both kids and parents. Just in the past week though, following the #ConquerBedwetting hashtag on Twitter connected me with several other parents with kids around my daughter’s age, who all still struggle with this issue. Hearing that we’re not alone – that’s a huge help.
I know there adult incontinence products that we could try for my daughter now that she’s older, but they aren’t really made with bedtime in mind. We miss the features of UnderJams that made them so easy and discrete to use. The lower waistband that didn’t stick up over the edge of her pajama pants, the quiet material that felt and sounded more like cloth, and the ultra-absorbent Night-Lock core that kept leaks from happening are all things you don’t find elsewhere once kids outgrow their UnderJams.
Just like with daytime potty training, I know that this too shall pass. Someday, after chemo is done and our lives are back to what used to be normal, we’ll look back and remember those days when bedwetting seemed like such a huge deal. Her body will finally ‘get it’ and she will be ready.
In fifth grade, she went on a field trip to the local movie theater and one of the film choices (with parent permission) was The Avengers. Abbi chose it as the lesser of two evils and has been hooked ever since. The Iron Man movies. Thor. Captain America. Even the Hulk, although she sat through that movie mostly under protest – Hulk is not her favorite Avenger.
Iron Man is. Followed by Captain America and then Thor. I’d never seen these movies beforehand, but I’ve now seen most of them, if only in bits and pieces as Abbi watches and re-watches them. When the Marvel Cinematic Universe expanded to television, I thought Abbi would explode in happiness. She’s obsessively watched every single episode of Marvel’s Agents of S.H.I.E.L.D. as it comes out and we all suffer through the hiatuses with her. This winter’s was easier than last, since she had Agent Carter to keep her occupied.
Ron watches the movies and shows with her, and I watch as well, although I can take or leave most of it. Marvel isn’t Abbi’s only fandom – she also fangirls over Dr. Who and most recently the Night at the Museum movies. But she has an obsessive personality and when she gets into something, she really gets into it. She’s loved Marvel for years now. But up until recently, Abbi was the only Marvel fangirl in the house.
That’s no longer the case.
Over the winter, Abbi introduced Becca to the Avengers Assemble animated series and suddenly we had a second Marvel-loving little girl. Becca’s favorite Avenger is Black Widow, so it’s sad to me that it’s very difficult to find Avengers gear with Black Widow depicted – most everything Marvel is found in the boys section, including the t-shirts we’ve gotten for Abbi, all of which are either unisex or come from the men’s department. Apparently boys aren’t as into Black Widow as they are the male characters. Or at least the clothing designers think so.
We hadn’t let Becca watch the live-action movies yet as she’s only 9 and The Avengers is rated PG-13. Becca is very sensitive when it comes to television and movies – she often will refuse to watch new movies, especially in the theater where she can’t leave the room if things get intense or scary. She regularly wanders in and out of the room as we’re watching movies at home, to avoid the parts she doesn’t want to see. But she wanted to watch The Avengers, and since she was already familiar with the characters and the general storyline from the animated shows, Ron and I talked about it and decided that it would be ok.
Hannah has steadfastly refused to have much to do with Marvel – possibly because Abbi is so very much into it. But with the new Avengers: Age of Ultron movie coming out soon, she decided that she would give Marvel a try, so over this past weekend Ron and the girls (along with Abbi’s friend C, another big Marvel fan) all sat down to watch The Avengers together.
Becca loved it – and she stayed in the room for the entire movie. Something almost unheard of for a first viewing with her. Hannah gave it a thumbs up when I asked, which is pretty much a ringing endorsement from her these days. But – what is more telling to me is that while in the hospital today for her next round of chemo, she immediately pulled up the first Iron Man movie to watch this evening. Since Ron and the other girls were on their way, she waited until Abbi got here and then the two of them watched Iron Man on Hannah’s little netbook, sharing a set of earbuds between the two of them. Abbi had to leave before the movie ended, so Hannah finished it by herself and then watched half of Iron Man 2 before succumbing to the sleepiness of the anti-nausea meds.
Abbi received the first season of Agents of S.H.I.E.L.D. on blu-ray for her birthday a few weeks ago, and she’s already begging Hannah to watch it with her. She may be our Super fangirl but she’s no longer the only superhero fangirl in the house.
And as a geeky sci-fi loving girl myself, I wouldn’t have it any other way. 🙂
I was not asked to post about Marvel or The Avengers nor am I being compensated in any way for writing this post. We haven’t received any Marvel products or movies for review, but have instead spent our own money to help feed Abbi’s Marvel obsession (within reason, lol). As always, all opinions stated here are 100% my own or those of my family.
This week will be a study in contrasts, in more ways than one.
I’ve spent the past 6 days in Orlando, Florida on a solo trip to the TravelingMom 2015 #TMOMDisney retreat. It’s an annual chance to learn, grow, network and enjoy the time away from home. Last year we made it a family affair and did a road trip down, but this year I flew down alone.
Coming to the ‘happiest place on Earth’ alone is both slightly freeing as well as depressing. It brings back to mind the way I used to feel as a single adult walking through a family-oriented festival or event… Somewhat lonely. But then again, when I am at Disney by myself I am able to wander at will, ride what I want to, and if I want to stop every 20 feet to take a photo – well, nobody is going to complain.
Expect to see a plethora of photos from this trip, by the way… 😉
Today is transition day. Yesterday I checked out of the very comfy Coronado Springs Resort at Disney, tried out Uber for the very first time, and arrived at the Palms Hotel & Villas. They are being kind enough to host me for one night to check out the resort and write about it (review coming soon on TravelingMom.com). It feels luxurious to have a one-bedroom suite all to myself – complete with full kitchen and a really comfy seating area. Later this evening, I will board my plane for home and the hours after I arrive will be spent frantically unpacking, doing laundry and immediately re-packing so that we can head out first thing in the morning – back to what is now very familiar territory, Helen DeVos Children’s Hospital.
Hannah’s 6th round of chemo was pushed back a week (and a day) to allow for my trip – we do not want her to be in the hospital if one of us is traveling. Ron’s job has been very accommodating with travel that they had planned for him, but this opportunity was not something I was able (or wanted) to pass up. I do think that the extra break was good for Hannah too – her blood counts were dismal a week ago but had recovered nicely on Thursday, so she is good to go for tomorrow.
I don’t want to leave, and yet I can’t wait to get home, to hug my kids and know that I’m not hundreds of miles away if Hannah were to spike a fever.
From heat, humidity and sun, I will be heading home to rain, cool temps and possible snow flurries.
The sounds of crowds have surrounded me here in Florida – children screaming with laughter or with tears, happy music playing, or even just the wind rushing through palm trees. For the next several days, I will be surrounded mostly by silence interrupted only by the sounds of machinery beeping, nurses checking in, and maybe a word or two from a reluctant Hannah if I’m lucky.
From the place where kids dream to come, to the place every parent dreads to take them…
The terrible 2’s? No problem, got that down. The toddler and preschool years weren’t fun at times, but little ones can be manipulated into doing just about anything and if you’re really good, they even get excited about it too.
Moody teenage daughter? Check. But even she pales against the attitude that we get from her 12-year-old sister.
To be fair, Hannah is not an attention-seeker, in fact quite the opposite. So she isn’t overtly dramatic. It’s just the quiet steadfastness which gets frustrating, especially when we see her personality shine but she hides it from others.
As with parenting smaller kids, it’s still all about control. We have it, she wants it, and therein lies the crux of it all. When she gets her own way, she is all sweetness and light. But if not… Grouchy bear time.
And she works it so hard – takes everything just as far as she possibly can to push all of our buttons. No bedtime kisses anymore and doles out a hug only on her own terms…
We look for the balance between letting her have at least a semblance of control wherever we can, and making sure that she’s respectful and cooperative when she needs to be.
It’s not always an easy thing.
Especially when life throws a major medical wrench into the middle of your tween’s life and that teensy bit of control that she once enjoyed goes mostly out the window.
Suddenly she has almost no control whatsoever over massive portions of her life. And there’s nobody she can blame – it’s not our fault, not the doctors’ and nurses’ faults either.
But we are all the ones here – the ones she can take out her frustration on. Except that she rarely shows frustration. I wish she would.
Instead, she gets quiet. Doesn’t want to answer questions or talk to anyone except in shrugs and nods whenever asked by someone in the medical profession.
I get it. I know how much she just wants everything to be normal again. The old normal, where she’s not pulled out of school for hours or days to be poked, prodded and port-accessed. Where she can simply be a moody tween girl and not stand out from a classroom full of other moody tweens.
Nowadays, she stands out. By the hats she wears 24/7 to cover her balding head. The weight loss and pale skin. Sores, blisters and who knows what else to come. They all cry out ‘cancer!’ to everyone who sees her.
So she keeps control wherever she can. And there’s so little of it she has that we give her more leeway than we normally would. Is she respectful? Sort of, within reason. Cooperative? Not always and only as much as she absolutely is forced to be.
Another parent said something on Facebook that resonates with me. I can’t remember who. But it went something like that the true face of childhood cancer isn’t only the smiling bald kids that you see on posters and billboards. The public almost never sees the pain, the frustration, the messiness, the stress and loss of control that are what a child fighting cancer has to deal with on a regular basis. And when you throw tween or teen hormones into the mix… It’s not pretty. Not at all.
I hope that someday Hannah will be able to open up. If not to me, then to another trusted adult in her life. And at the end of all of this, that she’ll be a stronger person for having endured it. Some days, I have to hold onto those hopes and dreams that we have for her when she is driving me crazy and making me want to pull my own hair out.
Then again, I guess driving us crazy is her job. And in that respect, she is still a normal tween girl.
I feel like 2015 is going by in a blur so far. Two months ago today our world as we knew it completely changed, when we heard the words, “there was something of concern on her CT scan.” Surgery, then the dreaded phrase, recurrence of tumor. One month ago today our ‘new’ normal began as Hannah was admitted for her first round of chemotherapy.
A few moments of 2015 truly stand out, but most of them have blended into one another as we now look at time in chunks of ‘between hospital stays’ rather than weeks or days. I can only look as far ahead as the next admission – what we need to do in order to make it to, plan for, and get through. Each discharge is only cause for celebration in that it means we can go home, “until the next time.”
I feel caught between two worlds – the moment I walk into her new hospital room everything that happened since the last stay fades away. And as soon as we walk into the house, the ‘real world’ of laundry and dishes and school and work and bills and pets and everything else suddenly comes into focus.
My brain automatically prioritizes everything in terms of either Hannah-related or everything else. In 2014, I felt as if I were a fairly organized person. I juggled kids, home, family and work in a competent fashion, with only minor hiccups here and there. Nowadays? I’m lucky if a piece of information stays in my head for longer than 5 minutes.
My husband doesn’t understand why I have to stay at the hospital every night that she is here. I can’t explain it easily, but she is my child and I am her mom and when she is hooked up to tubes that are pumping toxic chemicals throughout the body that I carried for 9 months inside mine, I feel that I have to be here with her. Is that fair to her sisters? No. And I make it up to them as much as possible in between hospital stays and when they are here to visit. I know it’s not the same though. And when my 9-year-old is in tears because I won’t be at home with her tonight, my heart breaks and I want to tear myself in two so I can be there and here all at the same time.
Even though this year is zooming by, each individual day takes forever to get through. And each night I am left with a long list of everything that escaped my head and therefore did not get done so I add it on to the ever-growing list of what needs to be managed and handled tomorrow. Only to be faced with 20 new things that need attention when the new day comes, pushing everything else out of my brain again.
Everyone is being so wonderful, supportive and caring. But then I worry, am I being grateful enough? Thankful enough? I don’t want to need meals delivered or fundraisers held. And yet… I can’t imagine going through this without that support, because it’s difficult enough even with all of those caring hearts and souls helping out. And then I worry, how can I give back? How can I make sure that we deserve everything that is coming our way? How do I deal with the meal that was lovingly prepared that my kids try but won’t eat? With the well-meaning gifts that I know won’t get used?
This is a new way of life for us, one that we never asked for and would give up in a heartbeat if it meant that we could give the cancer back too. Because I suppose that is how we make sure we keep our heads on straight and show all those who care about us that we honor them and appreciate everything they do. We love on Hannah as much as she’ll let us. We make her laugh when she is feeling discouraged or sit with her when she is feeling ill. We badger her until she gets out of the bed and goes for a walk, or drinks another sip of water. I memorize blood count numbers and drug names and fight for her to get a finger poke instead of a blood draw, because she sees too many needles as it is.
Our family’s job is to get her through this, and I know we will. She will grow up to be a strong, healthy, vibrant woman with a deeper understanding of what truly matters in life and how to embrace others in the way that she has been embraced this year.
Tomorrow she goes home from the hospital again, the 3rd round of chemotherapy complete. But for now I will watch her sleep.
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