Posted by: April Hawks | January 10, 2013

Minecrack and Flies.

Kayden is home sick, again, today. He seems to be fever less, which is awesome! He also has a doctor’s appointment today. Chris is playing on his Facebook account and laughing a lot. Spencer, the Bionic Baby, is playing Minecraft (which I also call Minecrack as it is HIGHLY addictive) with Kayden. Spencer has a diaper, socks and his port access on at he moment. Not shirt, no pants.  The day is warm, but windy. It feels like spring, though I know that will be short lived.

Spencer has done really well with his port staying accessed this week, which is a great thing. It means fewer needle sticks for this session and I adore that. It isn’t that it hurts him. The Lidocane sees to the fact that he doesn’t feel it. It is just so traumatizing for him to see a needle coming at his chest. It is for me, too.

Kayden is full of snot. Literally. He keeps sniffling while he is talking and has to blow his nose every few minutes. I feel bad for my poor love bug. But he seems to have more energy. He is still cranky, but that is more of a Kayden thing than a sick thing. He just used my own words against me. When I asked him why he is ignoring both Spencer and I when we talk to him , his response was “People keep saying that if I don’t have something nice to say, don’t say anything.” Touche.

I am tired, but the kind of tired that comes from oversleeping. It is kind of nice, since Monday I had to get Austin off to school, Tuesday was Chemo and Wednesday was my day for school drop off again. Today, I got to sleep. Tomorrow I get to do chemo again, after school drop off. Woo hoo! The action packed life of me. lol.

I have chores ahead of me today, so it is actually probably helpful that Kayden is home, as he can keep Spencer entertained while I am busy. Normally, Spencer tries to “help.” Dishes, laundry, bathing Kayden, dinner, cleaning in general, and hopefully some writing. I have been putting writing off in lieu of watching Battlestar Galactica. I have a new love. That is a fantastic show! I am in love with Netflix and its plethora of shows that I can watch at my own leisure. Instead of battling to try to watch shows when all the kids are up and trying to hear around them (which is impossible) I can watch them after they are in bed. I also get the chance to watch shows that have been off the air for years. And some hilarious B movies that I never would have even heard of.

I have started 2013 off with a wonderful addition to my already chaotic life. I am officially a member of the team at Nightscape Press. They are a rapidly expanding publisher of Horror works. This is a great experience for me on so many levels and I am blessed to have this opportunity. I have my friend, Peter N. Dudar to thank for this experience for a lot of reasons. I had never been big on horror Novels. Ever. The only reason I have even read Stephen King is because I saw the movie The Stand and the story was wonderful and I HAD to read the book. I have read Jaws in High School, on my own, and of course read Poe as required in school. The Stand was a ‘gateway’ book into an appreciation of Stephen King and I have enjoyed his work ever since. However, I still shied away from other horror books.

I remember, very clearly, my excitement when an acquaintance (who is now a dear friend) and I were talking, after we dropped our children off at preschool a couple (or more) years ago. I told her that I am a writer. She told me that her husband is a writer too. I felt like I had struck gold! There was another writer just blocks from me! Maybe we could share “my life as a writer” stories. Commiserate about rejection letters. I was super excited! All of these thoughts went through my head like a whirlwind. I had yet to even meet the man.

A time later, I still had not met her ‘phantom husband’ but I saw his work area. I was in love (with his office…not him…still had not met him, remember?) Grey walls, paper chains, bat covered gauzy curtains. My friend had painted the office and he had a dungeon that he could write out of. An above ground, sunny dungeon, but a dungeon just the same. Shelves were stacked with books and an impressive collection of horror movie figurines. Freaking awesome! And still, I wondered about the man himself.

Some time passed and I met Peter. We have done karaoke together, children’s birthdays, ViSalus parties, and more over the last couple years. And then came THE NEWS. Peter’s book was being published by a new company. Nightscape Press. I was stoked for him! I was stoked for the company. I was stoked in general. I friended the company and over time the owners. I have been reading all the horror anthologies Peter has been published in and am a proud owner of his novel, A Requiem for Dead Flies. I have read ALL the stories in the anthologies and am now a true fan of the genre of Horror. I have an interview that I conducted with Peter (that I am looking for a home for). I am just in general happy for all involved. And with out any of my prior knowledge of this, Peter put me in his acknowledgements. I only found out when I had a copy of the book in my hands (tricky, tricky ;) I am truly blessed.

Then came MY news. Nightscape was looking for people to join their team. They are expanding rapidly. They needed a bigger staff. Within  ,probably,  minutes, I had applied for all three jobs they posted. This was perfect! I could work from home, or the clinic, or the hospital…anywhere. It is in the publishing industry. It is with a fantastic group of people that I have met online. It was PERFECT.

A month later, after the holidays had passed, I was told that I am in. I am pumped! I have a blast working with Nightscape and hope that this goes on for a long, long time.

This was a long winded way to say that because of Peter Dudar and his publication with Nightscape, I have found a great opportunity that I am excited about! So, thank you, Pete (and Amy, of course). And thank you, Nightscape.

 

Related articles

 

2 Comments

Posted in Daily Life | Tags: , , , , , , ,

Posted by: April Hawks | January 9, 2013

Continued Reflections on Cancer

As I had said in my post, earlier today, (reading this post first is a great way to see the rantings and ramblings that have brought my mind to this point today ;)   Reflections on Cancer )  I am blessed not that so many people that I now know have Cancer. I am blessed that I can look to them as inspiration in our situation. I hope that makes sense to you. Obviously, I wish I had met them under different circumstances.

But I have learned so much! I can have actual conversations about medical stuff with a nurse friend of mine…and understand what she is saying. (That is a nice feeling, I have to say) I have learned that there are more cells than just red and white cells in the blood and that they all have really long, interesting names and jobs. (And that is what I get for not taking anatomy in High School…) I learned which ones are critical in that if they drop to a certain point, that means Spencer needs a transfusion. I have learned that Lumbar Punctures are not LONG surgeries, nor are Bone Marrow Aspirations. And that they don’t leave disfiguring marks. Just tiny little needle scars. I have learned that not all nurses are good at what they do. (Most are, but we have encountered a few that…oy) We have learned about the Children’s Cancer Program. I have learned that “Chemo” is not one type of chemical. There are many, many kinds of chemo. I did not know that. I have learned that not all chemo patients end up bald. Most do, (And not even completely) but Spencer still has 3/4 to 1/2 his hair evenly spread over  his head. I have learned about the different options for accessing the body for Intravenous Meds (there are more ways than an IV in the hand…again. I did not know that) I have learned recently (he would not let me anywhere near it for a LONG time) that Spencer’s port kind of feels like the top part of a wine cork in diameter. It is odd, to say the least. I have learned that you can access it as needed and he doesn’t have to have tubies all over him all the time. (I had thought that there was a cap over it…I have no idea why I thought that) I have learned that we are not alone. I have learned that there are resources. I have learned the powers of prayers (not that I didn’t already know that, but that there are medical studies supporting it) And I learn more every day.

Life has an interesting way of changing your perspective in the ways you least expect it through a change that you could have never predicted. Someone asked me a while ago if this experience has made me stronger. Having had lots of time to think about it, now, I would say that no, this experience has not made me stronger. What I think it has done is changed my perspective. Had anyone asked me a year ago what I would do if my child was diagnosed with Cancer, I would have probably said “I don’t know” while thinking to myself  “I would lose my fricking mind…that’s what I would do…” And I was partially right. I had a slight mental breakdown when they told me. But I recovered quickly and I have been Okay ever since. None of it is fun, but it is all bearable.

Really, dealing with ALL is like any major task. Broken down into steps, with a plan, it is easy enough to handle. Give me a task…meds to give, appointments to attend… and I am good to go. But when I stop to think, I mean really stop to think, I am like,” Holy crap. My kid has Cancer. ” So I don’t stop to think. I take the small steps, the daily challenges (today’s is going to be giving Spider Thug two doses of medicine twice…that is enough for one day, lol) Tomorrow, I will take the small steps too. But by looking down at my feet at the small steps I am taking and looking to the sky to be thankful for what we have, I was able to look back in the month of December and realize how far we have really gone. Four and a half months (ish) are behind us. Those baby steps have brought us miles and though we have miles still to go, there is movement. There is progress. And in between all the baby steps- the chemo, the meds, the appointments, there is life. Life dances through us every day and around us. So sometimes our baby steps are waltz steps.

Related articles

 

6 Comments

Posted in Daily Life | Tags: , , , , , , ,

Posted by: April Hawks | January 9, 2013

Reflections on Cancer

Kayden, my 6 year old, is home sick. For the third day in a row. He has the plague that is going around, with a fever off and on, aches, pains, and a cough that doesn’t allow him to sleep as well as he needs. Chris has had it. Jeff has had it. Spencer has had the cough. Austin and I seem to be the only ones that have managed to escape it. So far.

After a lovely two week break from treatment, Spencer and I were back at Maine Medical bright and early yesterday morning for a Lumbar Puncture to add some chemotherapy to his spinal fluid to keep the cancer cells from playing hide and seek in there. When he woke up from that procedure, we went right over to the clinic to have chemo through his port. He is remarkable about doing that. He does a wonderful job when they access him (which means when they put a needle into the port they have inserted under his skin on the left side of his chest.) In order to prevent him from needing to be accessed again on Friday when we go in, I decided to keep him accessed until that appointment. As great a job as he does when he is getting accessed, any time that I can spare him that particular trauma I will. I numb his skin with numbing cream and I am sure he doesn’t feel it, but who wants to have a 3/4 inch needle coming at them repeatedly? If keeping him accessed this time works, maybe this batch of chemo will not be as difficult on him as it could be. If this works until Friday, then I am hoping to keep him accessed through the weekend because we have treatment on Monday. In February, he has a batch of treatments that are four days in a row. If we don’t need to keep sticking needles into him for that, I will be a happy mumma. Trial and error, right?

What this means for us, daily, is that I am back to flushing his line to keep it clear. Once a day, I push some saline and some Heprin (an anticoagulant) through the tube that is attached to the needle that is in his port. It keeps the line clear and unclogged. Spencer is not at all bothered by having his line flushed, though. He actually helps me push the fluids in with the syringe. He loves to do that.

The port, a catheter, is connected (under his skin) to a line of tubing that runs directly into his heart. All the chemo goes into the heart and any blood draws he has comes right from it. This is a better option for a busy three year old than the PICC line he used to have, that ran from his right arm, through the veins and into his heart. Unless we keep Spencer accessed, there are no tubes to worry about and clean. The PICC line had a tube coming right out of his arm that had to be flushed daily and was dangly and easier to infect. With the port, he can have baths and swim and whatever three year old boys do (not so much when he is accessed, but in general) and with the PICC line, which was less sturdy, he would have had it replaced monthly. The port, unless something goes wrong, will be the same one that he will have until the end of his treatment in three years.

Let me just say that in the last few months, I have learned more about blood counts, hospitals, nursing, needles, medical equipment, blood draws, surgeries, cancers, fevers, doctors, protocols, clinics, IVs and treatments than I have EVER wanted to know. Who wants to know that 4,000 kids a year are diagnosed with Leukemia. 4,000. When the doctor told us that, I said “How many?” he repeated the number and then added “I know that sounds like a lot…”

“No.” I cut him off. “It doesn’t.” I KNOW that out of the whole population of this country, 4,000 is not a lot of people. Not even close.

But we are one of “them”. A family that adds to the statistics that parents get when their child is diagnosed, now. We are part of the “them” that shocks people in the scarcity of the numbers. We are past the point where we are new to this situation. Not yet Cancer Vets, but not green, either. We are one of the families that, for no reason other than “bad luck” (meaning that this type of cancer is not due to a genetic predisposition, or environment, or choices or anything.) are drastically changed.  There is NOTHING we could have possibly done to prevent this…or even see it coming. But we are lucky.

The cure rate (which means 5 years cancer free) with Pre B Cell Acute Lymphoblastic Leukemia is over 90%. Those are great odds. When they said “Cancer” I thought my baby was going to die. Period. By the end of that conversation, I did not. I was still terrified. I was still mad. I was still bargaining. “Give it to me. Please. Give it to me instead.” But I had hope.

I have been blessed. Because of Spencer’s journey (that is what they call it…a journey) I have come to know several families with cancer in one form or another. So many special souls that deal with worse than we do every day. I have had my eyes opened to the stories of others, seen the lives that have been touched. Seen the hope in all the eyes. I am fortunate to know these people that I never would have met otherwise.

I have seen the other side of cancer. Two amazing people, fighters, that I know passed away in 2012 because of Cancer. Wonderful, vibrant people that, had I known them my whole life and one hundred years beyond, I would not have known long enough. One of those people was two years old. I learned from him more than he will ever know. The other was 35,  a dear friend and my neighbor. She knew I loved her…but that is never enough, right? I miss them every day.

I have to go, now, friends. But I will be back to add more of my thoughts. This is important to me. And maybe to some of you, too.

 

 

5 Comments

Posted in Daily Life | Tags: , , , , , , ,

Posted by: April Hawks | January 4, 2013

Resolutions

 

DSCN4459

 

Two days ago, I called an informal meeting and gathered the guinea pigs…I mean the family. I presented them with an idea and after a couple rounds of eyeball rolling, they seemed to warm up to the idea.

My plan, I told them, was to come up with a set of resolutions that we would work on as a family.

“What are some things you have seen in the house and family that we can work on together>”

Once the kids started brainstorming, they didn’t want to stop. I wrote every suggestion down, no matter what opinions were expressed about it.

After we were finished brainstorming, we worked on the final copy. We voted, as a family, on which ones made the list (although the kids were still trying to add new ones.)

Those suggestions that didn’t really work for the family list were tabled for personal lists. For example, from the brainstorm list, Kayden added that we should all work on the Pledge of Allegiance and the Boy Scout Motto. He explained that this was so that he could learn them better. This, I told him, wold be a perfect goal for his personal list. His eyes lit up and I could see him plotting the other items on his own resolution list. Austin wanted us all to get fit, specifically by doing push ups. Uhhh….Chris and I exchanged glances. Yes, we all need to get in better health, but A) Momma‘s not a push up kind of person and B) that needs to be an individual goal.

When all was said and done and my darlings’ attention spans had reached the limits, we had come up with a list of ten items to focus on this year. Next week, we will be working on personal lists. Each person contributed and has at least one item on the list. I now present the 2013 Flock of Hawks’ Resolutions: (and my comments)

Dad- Work on keeping the house clean together. Take pride in our house. Keep it presentable.  (Not an easy goal, but one that can be done together)

Austin- Find ways to help people. Citizenship.  (this one makes me smile)

Spencer- Put ornaments on the Christmas tree. (He was REALLY excited and said this one repeatedly. Since Christmas will happen in 2013, it makes the list.)

Mom- Speak with kindness (Self- explanatory)

Dad- Paint the living room. (What? You are tired of looking at the three paint samples that have been on the walls since before your deployment? Who wouldn’t want to see orange, yellow and baby blue against a peach backdrop?)

-Austin says purple or neon green (gulp) Mom and Kayden say blue (relaxing. A nice pale, rich blue) and Dad says Light lavender. (I could deal with that)

Austin- Rewards at the beginning or end of every week for doing chores. (Wait for it…the following are his suggestions. I am so proud! I am not being sarcastic)

-Play a game ( A BOARD GAME) as a family, be dinner helper, choose a movie or Hawks Bucks (a rewards/points system)

Austin- Trust development (9 going on 30)

Mom- Find different ways of expressing ourselves (Mostly, I think temper tantrums need to go away)

Mom- Dance parties more often (We NEED more silly)

Kayden- Work on our money (I whittled this resolution out of a LONG monologue. I am thinking I can use Hawks Bucks to teach them financial responsibility. And point out that we don’t need to buy a new gadget just because it is a new gadget.)

 

Right before I sat down to work on this post, I transferred the list to a 12 x 12 scrapbook paper. After I post this, I will find a great, eye catching place to hang it.

I am looking forward to reviewing these next year to see where we are and what our new goals are! For now, I will look back at how far we have come in the last six years that have brought us to the point where we can make such a thoughtful, heartfelt list.

Related articles

 

1 Comment

Posted in Daily Life | Tags: , , , , , , , , , , , , , , ,

Posted by: April Hawks | January 2, 2013

See the #fireworks I created by blogging on #WordPressDotCom. My 2012 annual report.

See the #fireworks I created by blogging on #WordPressDotCom. My 2012 annual report..

Leave a Comment

Posted in Uncategorized

Posted by: April Hawks | December 23, 2012

Emotional Music

Why do we assume that emotions are simple? We feel them, so we should know that they are complex, wiggly things that like to hide at some times and explode forth at others and entwine with each other, breeding new and different ones. Yet, for some reason, we expect emotions to be solid and concrete. Why?

Think about a seemingly simple emotion. Anger, for example. We, as a country, are angry about the shootings at Sandy Hook. But anger is just the tip of that emotional iceberg. Below the water is fear that it would happen in the first place, fear that it could happen to us, sorrow that the families are suffering, hurt for the lives cut short, gratitude for the teachers that protected as many children as possible, sympathy for the friends and family, horror for what was seen that day by staff, children and first responders, relief that our children are home safe, guilt that we feel that relief, hope that we can fix this and stop it from happening again, and faith that those children and staff are in a better place. I could go on forever.

Under that initial anger in the example above are ten other emotions mixed in. Not to mention the scores of reasons for the anger alone.

And yet, knowing what concrete creatures we are, we a) expect others to feel the same way. How do we still expect that? We know we are all different and have different experiences and different points of view. It only makes sense that we should have different feelings about the same situation. And yet, somehow, we expect that we will all react the same way. b) expect that one emotion is going to be enough. If you sit long enough and listen to your heart as it talks to your brain, you will know that we are a symphony. Sometimes the drums, the primal, tribal, angry, loud, brashness of ourselves are at the forefront. Other times, the creative, whimsical woodwinds are at the forefront. But the whole time, the orchestra is playing the song that is you. And your loved ones are their own song.

Now, if we could all remember this, maybe-just maybe- we could all work together in concert. How glorious could that be?

 

2 Comments

Posted in Uncategorized | Tags: , , , , , , , , , , ,

Posted by: April Hawks | December 21, 2012

Ruminations on safety. (LONG)

I posted a picture on Facebook a few days ago and it sparked a conversation I have been thinking about since then.

The picture showed a service member and said something to the effect of  ‘Armed military members would gladly patrol our schools’ (I am writing this by hand at the moment, so I don’t have the exact quote.)

Around the same time, a picture started to circulate of a service member in full uniform standing guard outside his son’s school.

A Facebook friend, whose opinions I respect, said basically “keep guns away from me and my kids.”

I responded that people are looking, in the wake of atrocities in Newtown Conn., at solutions. We feel out of control. We are all, I think, trying to fix that.

Some parents are considering home schooling more seriously than they were on December 13, 2012. I am not one of those people. I was not looking at home schooling my children before, either. I can not keep them in a bubble forever. I can not keep them safe forever all by myself. At some point, I have to trust them and the people around them.

Also, I see the posts about the teachers that literally sacrificed their own lives for those of the children. I know a lot of teachers. I was raised by two. I trust that the people I send my children to each day would do the same for my kids. That is a whole lot of trust in educators after such a horrible tragedy. However, I have that trust.

I keep in mind, too, that crazy is everywhere. There have been school shootings before. Kids killing kids. Not some random nutjob off the street. Schoolmates killing each other. There have been both successful and foiled theater shootings, mall shootings, drive by shootings. You name it.

Now, people are going after guns. Let’s clear a couple things up. Let me preface by saying that, politically, I lean about as far left as is possible. I, however, am NOT against guns. BUT…

Not only does the second amendment say that it shall not infringe upon the right to bear arms…it says that this is because the free States need a well armed militia. This was written at a time when we had muzzle loaders. Like Paula Poundstone has said “The other guy had time to run away.” Now, we have a well armed militia with many branches (Army, Navy, etc.) Everyday people are not fighting in wars to protect the freedom of the United States, Our military does that for us. AND they have tanks. Which brings up another line of thought.

Should Crazy neighbor Bob be allowed to buy a tank (not that he could in this economy, but that is a different story) because not allowing him to will infringe on his right to be as heavily armed as he pleases according to the second amendment?

Semantics of Second Amendment and Constitutional rights aside, I do not believe that taking guns away is a viable option. I know a few Veterans that are legally allowed to conceal and carry. Good luck getting THOSE guns away. So the ‘how’ leaves a little to be desired. Plus, banning guns does nothing about bombs, knives, broken beer bottles, rope, fruit punch laced with whatever…crazy people that want to hurt people to the extent that this guy last week did WILL FIND A WAY.And barring all else, hands are not getting banned.

Second, and I have seen this argument a lot in the last week, making something illegal does not stop it from happening. Underage drinking, drunk driving, murder, rape (gods, I could write this list for pages and pages) are all illegal. They haven’t stopped yet. Another post says “Criminals don’t follow laws, dumbass!” Nuff said, there.

Some people are broken… screwed-up-six-ways-from-Sunday-should-not-be-out-in-the-general-public broken. Often, the tell tale signs are missed or ignored. THIS can be fixed. ( and mental health issues should be a whole other topic.) How can we fix broken people with a broken system?

Anyway, back to my original topic.

Here is why I think (with very, very careful screening) Veterans at schools are a good idea. Let me preface this by saying NOT ALL VETS. Some are as broken as this man was. But most are not (as with any group of humans) From now on I will just make points about Veterans in general (because I can’t continue to exclude, in every point, the above-mentioned group of Vets that would be, through the screening process, eliminated as viable for this job)

*Our Veterans have a fierce sense of loyalty to our country. That is why they signed up in the first place. They are the epitome of determination, loyalty and honor. When many Veterans I know saw the news a week ago, it was like a slap in the face. On our own soil.  Imagine coming home from a war zone to feel like your family isn’t safe. Imagine being deployed right now. Try to imagine it, anyway. I can’t. It scares me.

*Many Veterans have a little bit of a tough time adjusting to the civilian world. “Over there,” they felt like they were doing the right thing. They felt a sense of accomplishment. They helped each other survive when they could. Sometimes they couldn’t. What, in this first world country, will give you the same sense of right-doing? Sure, there are jobs out there but with the sheer number of Vets returning, what are the odds that those jobs are available? Now factor in all the civilians vying for the same jobs. Some feel that nothing they do “over here” will equal what they did “over there.” Protecting children…our children will.

*Many of our Vets need to get up and out of the house. They need a focus. Protecting children will provide this.

*We know that combat veterans are good under hazardous circumstances. That is what they are trained for, for crying out loud. They receive YEARS of experience in protecting people by any means necessary, including killing, and we expect them to get a job at Walmart bringing carts in? REALLY?

*I would bet that MANY Veterans would volunteer for the opportunity to protect our children. The costs would then include only training and occasional re screening. And many of them carry already. That blows the cost issue out the window.

*Our teachers are under paid and over stressed as it is. They have to worry about supplies, reporting abuse, special education, spoiled children, hungry children, budget cuts and now putting their lives on the line to protect themselves and the students they love to teach? Why, when we can take that off their shoulders, too. (Teacher pay is a rant for another time)

*Should we pay our teachers hazard pay? Probably. Are we going to? Probably not. Are we going to arm our teachers? I don’t think we should. Why arm twenty adults AND train them on proper use (and that is just in a SMALL school) when one, two, five people who already have the training and the weapons are willing to take this off our educators’ shoulders? PLUS, I can think of a few teachers that I have had in the past that I would be scared to arm.

*Where does this end? Do we stop with the teachers? Or do we include janitors, ed techs, substitutes, bus drivers…this is a slippery slope. The more people we arm, the more money it costs and the more likely the whole thing is to backfire.

I have, hopefully, been thoughtful on this subject. What are your thoughts?

5 Comments

Posted in Daily Life | Tags: , , , , , , , , , , , , , ,

Posted by: April Hawks | October 8, 2012

Reality Bites…hard.

 

There are few things that can be as frightening as a child that has an unexplained fever of 102-103. We endured the fever and embraced a new fear.

August 25, 2012 our three year old felt a little warm. Nothing to worry about yet, just slightly warm to the touch. I went to sleep unconcerned, thinking that maybe, even, I was imagining things.

The next day was a Sunday and our baby was boiling hot. We had no Tylenol in the house and couldn’t find our thermometer so Chris borrowed both from a friend and we began to give Spencer Tylenol and wait for the fever to come down. Spencer’s temperature was 102. Now, I am of the mindset that a fever needs to break on its own and that Tylenol only delays that from happening. We gave him Tylenol and waited to see what the next day would bring.

Monday brought more of the same and a phone call to his primary care physician and an appointment that day. His regular Dr. had no spots so we went in and visited with another doctor. She took his temperature, checked his ears and throat, and because his throat was red swabbed it for strep. She told us that if he was not better in three days to come back in.

Tuesday and Wednesday passed the same way. High fever, lethargic and miserable Spencer. He wasn’t eating or drinking, he was burning up and all he wanted was his mumma. Tuesday we had to bring our oldest son to the airport so he could fly home and all I could think about while I was holding my fevered three year old was the final scene in Rise of Planet of the Apes where a pilot is infected with a lethal virus and unknowingly carries it all over the world. Of course, I really wasn’t worried that Spencer was contagious, because with seven people in the house at the time he was the only one with these symptoms.

Thursday came and it was the day that I had marked in my head that we would head back to the doctor if he had not improved. He hadn’t. Despite baths, fever meds and time Spencer was still bouncing between fevers of 102 and 103 degrees. Spencer and I headed to the office and found out that the strep culture had not produced anything. The doctor told us that there was a possibility that this was an infection in his blood since she couldn’t see anything else in his ears or throat again. She was sending us to the lab for blood work and to radiology to make sure he didn’t have pneumonia or anything else in the lungs.

Spencer was miserable already and then had to get stuck in the arm for bloodwork and held in specific positions for x- rays. Neither of us had been sleeping well at all for the past week so we cuddled up on the exam table and took a nap together while we waited for results.

The doctor returned in an hour or so, though it felt like minutes, and told me that somehow, Spencer’s blood had clotted before it could get analyzed. I was thoroughly confused by that because there is stuff in the vials to prevent that, but she told me that we needed to go have his blood drawn again because they couldn’t use that sample. In the meantime, she told me, he was going to get an antibiotic in each leg in case it was an infection. After this blood draw, we could go home and she would call with the results.

Even after not eating or drinking for a week, Spencer was remarkably strong. He needed (for both blood draws and the antibiotics) a couple people to hold him down. That sucked. Big time. As soon as they called his name from the lab again, he started screaming and flailing. Smart boy. I watched as they put a rush status sticker on Spencer’s blood vials and then we thankfully left the office. We had been there for three hours. On the way home, I called my Mom and my Memere to keep them posted on what was going on and that we still knew nothing. We stopped by Memere’s house and my aunt and grandparents remarked on how pale Spencer was and how he just looked like he felt sick.

We went home and the boys got off the school bus. A half hour after they were home, we had been gone from the Dr.’s office for two hours. When we left, I was told that the results should be back in an hour or so. I did a great job waiting patiently…really I did. But I needed to find out what was wrong with my son. I called the Pediatricians‘ office and was put on the phone with the doctor we had seen.

“Have you gotten his test results back?”

“Actually, we have. Remember how I said that the blood sample clotted? There was a mistake. There weren’t enough red blood cells and white blood cells in the sample for it to look right so the lab had thought that the sample had clotted. The second sample looked exactly the same. I have been on the phone with the Barbara Bush Children’s hospital in Portland. It is right at Maine Med. I am on the phone with a hematologist there and I am trying to set up a room for you there. I am going to call you back in a few minutes, is that okay?”

“Yeah. Yeah. I’ll talk to you in a few.”

Chris took off with Austin and Kayden after I had told him we would be going to the hospital and I had called Memere to see if she would watch the boys. While he was gone, the pediatrician called back.

“Okay. I just got off the phone with the hematologist and they are expecting you. I need you to pack for a few days. You are going to be there at least through the weekend.”

My mind  was racing and I was having to work to focus, to pack and to process what was going on.

“Can I ask a question?” I couldn’t breathe.

“Yes.”

“Do we need to be worried about Leukemia?”

She sighed. “Honestly, yes. I’m sorry to have to say that, but yes.”

I don’t remember the end of that phone call, really. I also barely remember packing. I think I called my mom. I know that for some reason I anticipated having time in the hospital to write so I brought all my stuff for my novels. I packed stuff for Spencer, but couldn’t find his shoes or socks. I grabbed all our diapers but I think I forgot wipes. I know I brought Motrin and Tylenol…yeah…to the hospital. Because pain meds are difficult to get in HOSPITALS.  (duh)

Chris came home from bringing the boys to my grandmother’s and we flew to the hospital. I do not condone speeding. Which is why I was begging Chris to slow down the whole way to the hospital. He didn’t.

I was calm. The whole week, little sleep and all, I was extremely calm. I was in Mom-mode. The one where there isn’t a whole lot of thinking clear, concise thoughts, mostly enough to function. Nothing is absorbed, little bits remembered.

We arrived at the hospital in one piece (thank the gods) and a while later were brought to our room. We met the hematologist that I had been told about and he ordered an IV and blood-work. The results came back and Spencer had a transfusion that night. He received antibiotics in his IV and a ginormous amount of saline.

Chris and I agreed to switch off on who slept on the couch and who slept with Spencer.

That night, the hematologist told us that we were looking at three options. The first, and most likely, was Leukemia. The second, less likely, was A plastic Anemia. The third and least likely was a virus in the bone marrow. They were all curable. He would be okay.  He needed a bone marrow draw and at the same time they were going to put a PICC line in his arm for antibiotics or transfusions or in the case of the first option, chemotherapy. My head was still spinning.

We met a young girl named Emily. She is a beautiful smart thirteen year old with Leukemia. She made a sign for Spencer’s door. She included the words “Stay Strong” on it because those words are helping her on her journey. Her birthday is the same day as Spencer’s exactly ten years prior.

The next day, Spencer went under anesthesia for his procedures. His last words as the medication took hold were “I want Kokit (chocolate) Niwwwwwwk. (milk)” and then he was under. It sounded like a cartoon where a toy’s battery dies. It was pretty amusing, actually.

When the hematologist was telling us about what the options were, I asked a question that hindsight tells me that though an intelligent question, maybe I was foolish for asking. “If he has Leukemia, you will see the cells in his blood, right? That will be the first result you get back, right?” After debating the simplicity of reading the results, he acknowledged that, yes, this would be the first result.

In some ways, I needed to know the answer. In others, I could have had a few more minutes of ignorant bliss had that question not been asked.

At six pm, three hours after we returned from Spencer’s procedure and were back in our room, the doctor came to us and told us that he had results. I asked if he had a diagnosis. He said he had a 99% diagnosis. I ran to the smoking area to get Chris and we went into the little room (never a good sign to go in a little room for privacy)

The doctors told us that Spencer has Acute Lymphoblastic Leukemia. I cried. He said that about 4,000 kids a year get diagnosed with Leukemia. I must have misheard. “I’m sorry. How many?”

“About 4,000. I know that sounds like a big number-”

“NO. It doesn’t.”

I got myself together. He said “Cancer.” I cried again.

I asked how does some one get this?

“Well, its not hereditary. It’s not contagious. Honestly? Bad luck.” shock

Thanks to my Psychology 101 classes about ten years ago, I was narrating in my head the responses as I was going through the different stages of grief. I was literally sobbing and thinking of getting up to punch the door and a little voice in my head was going ‘yup. that would be anger’ I remember bargaining, anger, questioning why…the whole time I am gasping for breath and pouring tears out of my eyes.  I am pretty sure that I had a slight mental breakdown because shortly after that I told the people in the room that I was going to go take my meds because I hadn’t taken them and I was going to go hold my baby. I think I remember repeating that a couple times before I actually left.

Before I could tell my family or friends that were in the room and hanging out with Spencer, they knew. It wasn’t difficult to see it in my face. The snot and tears were probably a good indicator.

The next morning was hard. The first thought that I had when I woke up with Spencer was “my baby has Cancer.” That hurt. A lot.

After that, I remembered that there is over a 90% cure rate. I remembered that we had a plan. That we could attack this and win.

Spencer had another transfusion Saturday night and then Sunday was his birthday. His fever was gone on Friday. He was starting to perk up. His color was coming back.

After we got his diagnosis, I went to talk to Emily. I asked her if Leukemia hurts. She answered honestly that it does, sometimes. I appreciated that I could ask her what I knew I couldn’t ask my three year old. I also appreciated that she was honest.

The next two weeks consisted of vitals being taken all the time, lumbar punctures, chemotherapy and IVs. There were also wagon rides, rides on the IV poles, going to the “painting room” (the play room) and showing everyone that visited his wormie house. (I was amazed and impressed that he was allowed to bring that into the hospital)

There were friends made, both staff and patient. There was much more to this hospital stay that I will tell about another time. For now, I wanted to share our story of discovery. It hurts sometimes. It is hard sometimes. But the unimaginable has happened. And we are okay.

Related articles

 

Leave a Comment

Posted in Uncategorized | Tags: , , , , , , ,

Posted by: April Hawks | July 13, 2012

More Chocolate, Mumma?

Spencer is getting the hang of potty training. He is realizing when he has to go and for the most part is letting me know BEFORE he goes. Coincidentally, I just took advantage of a drug store sale where buying two packs of diapers saved me money and I figured (at the time) that I was going to be using them anyway so why not?

I am still using them at night, but we are working with underwear now as well. Which, Spencer has discovered, is much easier to pull up and down. So that is what he is doing.

The reward system we have set up for potty training is working well…too well…he has eaten a lot of chocolate in the last two days. lol. I am not complaining. He will be three in two months. I am glad he wants this. He is so proud of himself! And I am proud of him as well.

I feel like this post is dull, but with Spencer bouncing around the house and Disney Junior on at the moment, it has taken significant determination to even get this much done. He wants to play blocks, so over and out.

Related articles

Leave a Comment

Posted in Daily Life | Tags: , , , , , , , , , , , , ,

Posted by: April Hawks | June 28, 2012

Out of the Norm

6/22/2012

I have started the first portion of my journey. I have dropped off Spencer with my grandparents and have been dropped off at the Portland airport. I have passed through security, purchased some headphones so the poor person next to me is not subjected to Barry Manilow and am sitting at my gate unable to remain still. I am excited. This is my first trip to New York City as a final destination. I have passed through the city before, stopping to see the sights and I have been in both the airport and the train stations, but I am anxious to see the city itself. The big trick for me is to not look up at the tall buildings and make myself dizzy. I have done that before and am sure that would mark me as a tourist right off. I plan to take the opportunity to acquaint myself with the staggering height of the buildings on the ride to my hotel.

My friends have been helpful, giving me advice to help me not look lost and vulnerable. For this I am grateful. I will walk with purpose so I look like I KNOW where I am going, even if I don’t. And I probably won’t. Keep my purse slung across my body. Stay in groups. Do not go out alone. (That would be my husband’s advice.) As a note to myself on unrelated matters, I just discovered a wad of gum on my laptop cord. NO MORE GUM FOR SPENCER!

In true form for someone that has only seen car services on television and is relatively unfamiliar with travel in general, I just called the car service that is picking me up and let them know that my flight is delayed. Apparently they knew. Lol. I am sure I sounded like an idiot. Oh well.

I am going to log off for a bit and go get myself a sandwich. I am STARVING!!!!

My sandwich has been eaten, and I am on the plane and in the air. I enjoyed the view of Portland from the sky. It is always cool to me to see the same buildings that I know by sight from ground level reduced to the size of those found on a model train set. In fact that is how it always seems to me, like I am looking down on a model, not on the actual places. I have long held the idea that life is on a conveyer belt around me. Maybe that comes from watching too many movies and cartoons. There is one scene in an old movie or show that has an old model t style car on a treadmill with a screen beside it and someone is rolling the scenery around and around. That is how I used to picture it and I am not sure I ever really let that idea go. In my head, I stay in one place and everything else moves. Lol. I know it doesn’t. But, hey. If you know me, you know the world revolves around me. Good thing I am a writer. My imagination is a fun place.

Barry Manilow continues to croon to me. The flight attendant is bringing drinks around. And WHY is there never any Pepsi on planes?

I have completely dedicated this weekend to writing. I thought about bringing a book, but decided against it in favor of writing. I knew that once I got into a book that would be an easy distraction and I am trying to use the weekend to its fullest. I am not saying that I am not going to do anything BUT write. I need to experience life to write about it. I have to see some of New York to write about it someday, maybe. Right now I am content to write and listen to my music until my laptop dies. Then I will recharge it and do it again.

I am looking forward to seeing my room at the hotel. I have been drooling over the photos. I think I would call them creatively modern. Greyscale details, grey walls, with large floral murals and pops of bright green are what are shown on the website. Kind of old school Hollywood glam meets modern meets retro. Maybe. OR maybe the altitude is getting to me.

There is even a PILLOW MENU. I thought that meant there was like a late night snack menu. Nope. It means there is a selection of six different pillow types to choose from. Travel-ly illiterate. That is what I have decided to call myself. I am branding myself thus. I am not culturally illiterate. Just a very uninformed traveler.

Airports look a lot like airplanes from overhead. Random observation. Also, gum and Coca Cola do not go well together. At all.

We are in a holding pattern over Albany. We could be here for up to a half hour. Luckily, I already know that my car will wait for me.

Short of typing out Lyrics, I am not sure that I really have a whole lot to say…so I won’t!

LATER

Last Night I dreamed that I was going on vacation to Mexico or Hawaii. Mexico, I think. For some reason, we were taking off in the plane on a river bank. As we started to drive on the runway, the plane went into the ocean (river must have changed to the ocean) and the plane was under water. It was small, maybe even a private plane, but with it under water I was worried it would implode. It didn’t. I think we landed in a river too because I remember a blue (navy blue) and white patterned electric eel start to come after us. I was scared for a minute. That’s all I remember.

At another point, it must have been after, we were in Florida (which was not out original destination) And we met up with Vivian and Amy. They were just walking around.

(notes: Turbulence. Big. Everyone quiet. When they were done everyone started talking again.

LATER

The prettiest shoes have walked by me today. The girls wearing them are acting as though they are sporting sneakers instead of stilettos. Even watching them walk by makes my ankles wobble. I envy their balance and coordination, though not their aches and pains.

I am sitting at the bar of the restaurant. I ate earlier. The tables at this bar light up like the tables in Divine Secrets of the Ya Ya Sisterhood.

I tried new foods tonight. I ate Chicken R (outille?), a chicken breast stuffed with mushrooms and other yummy stuffers. Mashed potatoes with shallots and broccolini? (I think Broccoli Raab)

For desert I had a triple chocolate dish that was super creamy and light.

I just looked at the menu to see what I ate but it appears that our group got a different menu than the regular one.

I ordered a mudslide at the bar but my mouth is still burning from the amount of alcohol. It was STRONG. Apparently New Yorkers have built up a tolerance I have not.

LATER

They say ‘find a penny pick it up, all the day you’ll have good luck.’ Especially if it is heads up. But what if it’s right at the base of a New York City toilet?

6/23/12

I just had a fantastic experience. I saw a play written by Gina, one of the mentors. It was starring Amy Brenneman. It was PHENOMENAL! I needed an after play cigarette. It was AWESOME!

I actually spoke to her and she signed my playbill! She did run off pretty quickly, however.

Lee Turgeson signed my playbill too! He was fantastic. He took three pictures with me. He kept saying they sucked and had another one taken. That was super cool!

I think, however, that I am going to turn on the TV and relax now. I am BEAT! It is past 1:30 in the morning and I have an early day again tomorrow.

6/25/12

I am at a little café at the airport, preparing to go home. By preparing, I mean that I am wishing I could stay a little longer. Don’t get me wrong. I love my kids and am happy to see them but my time in New York was surreal. I saw a prostitute in a hotel bar and everything!

It looks, however, like I might get my wish. Not in the way I want to, however. Lightning is flashing across the sky and thunder is rumbling through the solid ground of Laguardia. My flight might be delayed. I meant that I wanted more time to explore the city. To sit in Times Square (which we passed by in the bus but I did not have a chance to explore.)

Careful what you wish for, it might come true, right?

The coffee is strong and it is bitter. So is my waitress. She is pretty enough, would be gorgeous in fact if she would just smile. A waitress that seems to be irritated to fulfill simple requests just is not appealing. But one of her co-workers just said something and she flashed a crooked smile and I was right. She is beautiful.

Related articles

Leave a Comment

Posted in Daily Life | Tags: , , , , , , , , ,

Older Posts »

Categories

Follow

Get every new post delivered to your Inbox.

Join 27 other followers

%d bloggers like this: