tag:blogger.com,1999:blog-52746794450494380442024-03-12T16:59:50.301-07:00So My Kid Has CancerUnknownnoreply@blogger.comBlogger27125tag:blogger.com,1999:blog-5274679445049438044.post-4368152251979300552013-10-28T08:04:00.000-07:002013-10-28T08:04:10.462-07:00Real Life HeroesOur 4-year-old son has cancer. Yesterday morning our refrigerator went out. We got to Lowe's the moment they opened and purchased a new one, but they could not deliver until Monday afternoon.<br />
<br />
Since he is undergoing chemotherepy, food safety is a priority. His body does not have the immune system to fight off even the weakest bacteria. We also have several hundred dollars worth of medications that must be kept refrigerated.<br />
<br />
We told Lowe's we would pick up the refrigerator since they could load it. But once we got home, how would we get it out of the truck?! We were panicked at the thought of losing meds (on a Sunday when Medical Park Pharmacy is closed, no less). We sent out a facebook SOS.<br />
<br />
Here's what happened:<br />
<br />
<br />
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Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-5274679445049438044.post-56025301733010647122013-10-24T19:21:00.000-07:002013-10-25T08:11:37.511-07:00Just BreatheWhelp, started the day with a nightmare of Ben's funeral (for some reason we were being forced to have a rehearsal dinner like at a wedding and I was trying to convince them not to leave Ben's coffin all alone at the church overnight). So fucked up.<br />
<br />
Went to the oncologist planning to be admitted, but failed counts (that always freaks me out because he is "off treatment" and that makes me feel like we're not DOING anything and the cancer cells have time to grow and replicate and it will get stronger). Not inaccurate, but not completely rational either.<br />
<br />
Came home and was excited to read the new MRD study from a global forum that the FDA held at the end of May. Regret what I learned. Ben's MRD level has a ~40% survival rate-even lower than we thought.
<br />
<br />
Sitting here reflecting on this hellacious day when we remembered that Ethan's Parent-Teacher conference was at 4:30 today. We just completely forgot.
Feeling like we are failing both of our children.<br />
<br />
This is so freaking hard. Sometimes I think "yeah, we're going to make it. We're going to be stronger for it." And then I get a sucker punch like today and I wonder how we will make it through the next day, hours, minutes. How have we not just exploded with grief? Literally, physically exploded? What is keeping the sinew and flesh of my body from ripping apart from the force of my heart breaking.<br />
<br />
My soul hurts. It's a physical pain, that measures nothing compared to the pain cancer has inflicted on the tiny 36-pound body of my baby boy. Nothing to the pain Ethan feels in those moments he thinks I don't care about him or have time for him (I know he thinks that sometimes, because I thought it at his age when my little brother was dangerously ill).<br />
<br />
Most days, with support, prayers, and a good sense of humor on my side, I feel mighty.
Today is not one of them.<br />
<br />
Today... I'm just trying to breathe.Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-5274679445049438044.post-58795698124274767392013-10-08T10:50:00.002-07:002013-10-08T10:50:40.477-07:00CureSearch 2013<iframe src="https://www.facebook.com/video/embed?video_id=10201652656629781" width="640" height="480" frameborder="0"></iframe>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-5274679445049438044.post-49729566551737294462013-08-13T11:24:00.001-07:002013-08-13T11:27:26.275-07:00It Happened<div style="margin-bottom: .0001pt; margin: 0in;">
<span style="font-family: inherit;">Nothing special or weird happened
that day. No doctor's visits or lab results, just a plain old Friday.<o:p></o:p></span></div>
<div style="margin: 0in 0in 0.0001pt;">
<span style="font-family: inherit;"><br /></span></div>
<div style="margin: 0in 0in 0.0001pt;">
<span style="font-family: inherit;"><span style="background-color: white; background-position: initial initial; background-repeat: initial initial; font-family: Calibri, sans-serif;">And then it happened. Ben came in,
looked us straight in the eyes and said, "I don't want to die." </span><o:p></o:p></span></div>
<div style="margin-bottom: .0001pt; margin: 0in;">
<span style="font-family: inherit;"><br /></span></div>
<div style="margin-bottom: .0001pt; margin: 0in;">
<span style="font-family: inherit;"><span style="background-color: white; background-position: initial initial; background-repeat: initial initial; font-family: Calibri, sans-serif;">You could have
knocked either one of us over with a feather. I couldn't even meet Mike's eyes
for fear that I would shatter into a thousand pieces and scatter across the
living room floor.</span><o:p></o:p></span></div>
<div style="margin-bottom: .0001pt; margin: 0in;">
<span style="font-family: inherit;"><br /></span></div>
<div style="margin-bottom: .0001pt; margin: 0in;">
<span style="background-color: white; background-position: initial initial; background-repeat: initial initial; font-family: inherit;">I asked our baby
boy why he said that. He replied, "Because when you get really really old
you die. And I feel like I a<span class="textexposedshow">m really really
old." </span><br />
<br />
<span class="textexposedshow">I spent the next few minutes telling him that he
will live another 100 years before he is old. His body feels old because it’s
tired from cancer, but the cancer will go away and his body will get strong
again. Gratefully, he agreed and bounced
out of the room giggling and chattering about Scooby Doo.</span><br />
<br />
<span class="textexposedshow">I feel like a loss of... Innocence, perhaps? Like I
was one person before that moment, and an entirely different person after that
moment. We knew that conversation was coming. We were prepared, but you’re never
ready. Death is too real to our young
family. Death is something most kids
think of in the abstract. Occasionally a pet dies, or even a relative, and you
talk it over with your kids. Tell the little concrete thinkers about heaven and
angels with halos. No one should have to
talk to their child about their own, very possible and very real, death.<o:p></o:p></span></span></div>
<div style="margin-bottom: .0001pt; margin: 0in;">
<span style="font-family: inherit;"><br /></span></div>
<div style="margin-bottom: .0001pt; margin: 0in;">
<span style="font-family: inherit;"><span class="textexposedshow"><span style="background-color: white; background-position: initial initial; background-repeat: initial initial; font-family: Calibri, sans-serif;">Mike and I agree that today is the worst
non-treatment day we’ve had. Ben should
have started Pre-K this morning. He should have chosen a cool backpack and new
pencil case. He should have made his special first-day-of-school breakfast menu
requests. He should be headed to Wayside
with his big brother. I should have picked out his clothes and packed his
lunch. He should be with his friends from Kids First. But cancer took that away
from him, from all of us.</span></span><span style="background-color: white; background-position: initial initial; background-repeat: initial initial; font-family: Calibri, sans-serif;"><br />
<!--[if !supportLineBreakNewLine]--><br />
<!--[endif]--><o:p></o:p></span></span></div>
<div style="margin-bottom: .0001pt; margin: 0in;">
<span style="background-color: white; background-position: initial initial; background-repeat: initial initial; font-family: inherit;">Mike held back
tears when he told me that as he watched Ethan skip into the school building,
it felt so wrong. He should be walking his little brother to class and
reassuring him of how fun it will be. <o:p></o:p></span></div>
<div style="margin-bottom: .0001pt; margin: 0in;">
<span style="font-family: inherit;"><br /></span></div>
<div style="margin-bottom: .0001pt; margin: 0in;">
<span style="background-color: white; background-position: initial initial; background-repeat: initial initial; font-family: inherit;">It’s all just so
wrong.<o:p></o:p></span></div>
<div style="margin-bottom: .0001pt; margin: 0in; tab-stops: 163.0pt;">
<span style="font-family: inherit;"><span style="background-color: white; background-position: initial initial; background-repeat: initial initial; font-family: Calibri, sans-serif;"> <br />
<span class="textexposedshow">Little ones just shouldn't get cancer.</span></span><o:p></o:p></span></div>
<span style="font-family: inherit;"><br /></span>
<div class="MsoNormal">
<span style="font-family: inherit;"><br /></span></div>
<span style="font-family: inherit;"><br /></span>
<br />Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-5274679445049438044.post-45661958579094792302013-07-26T13:50:00.002-07:002013-07-26T13:50:55.609-07:00They're not relationSHIPs; They're relationTITANICsLook. I get it. I'm a crazy person. I'm tired. Not like, "Whoa, that was a crazy week!" tired. I'm tired to my core. I'm doing things to help refill my tank. But instead of getting low, and refilling. I'm running on fumes, and getting a gallon of gas to tide me over until I'm running on fumes again. <br />
<br />
Which means, of course, is that I'm a mediocre employee, a pretty crappy wife, and an abysmal friend. I can't commit to anything, ever. Because Ben may start running a fever at any minute and I'm in the hospital fighting for his life with him for 8 days. Because Ben gets emotional and clingy and I have to be present for those moments. Because I am already dealing with judgement and guilt for maintaining my job (that I still LOVE so much). <br />
<br />
Mom stayed with Ben in the hospital last week. She met a father of an infant who was admitted for jaundice. The father all but called me a horrible person for not staying with Ben in the hospital. He pretty explicitly stated that I was a bad mother. He said I was greedy for keeping my job. He said a lot of other things that I know you have thought as well. I know you have, because I have. Trust me, no one is harder on me than me. I'm doing the best I can.<br />
<br />
It's no secret Mike and I have gone to counseling in the past and are at present. (We usually wear at as a badge of honor! Judge if you must, but we're ridiculously and absurdly in love with each other and don't care what anyone thinks, we're going to work for our marriage and this love.) We believe in mental health like you believe in physical health. The way you eat kale and hit the gym, we go to the therapist. It's about health for us, and we recommend going for any reason. That said, we are trying so hard to keep our marriage strong. But it's weakened. Marriages are an entity unto themselves that require nourishment, work, and attention. We have none of that to spare right now, so of course the marriage is going to feel the pain. (No one panic. We're not in "trouble", it's just not ideal. Don't send that "The Morris's are getting divorced" text. Unless of course you<i> like</i> the taste of crow.) <br />
<br />
My friends must be so sick of me. I'm distracted. I'm not focused. I'm pretty self-absorbed. I'm a flake and noncommittal. It's been interesting to watch a few drop off or get angry. But it's also been incredible seeing others come in strong. The ones who just keep trying, keep texting, keep e-mailing, keep talking to me. I believe there's a country song somewhere in there...<br />
<br />
So what's it like when your kid has cancer? Well, a predictable "it sucks" comes to mind. I will never be the same. My relationships will never be the same. But I bet they end up stronger, better, and will certainly be more appreciated.<br />
<br />
<br />Unknownnoreply@blogger.com2tag:blogger.com,1999:blog-5274679445049438044.post-18926693560947599932013-07-12T14:26:00.000-07:002013-07-12T14:26:01.686-07:00Mother F*#%ing CancerAs many of you already know, my 31-year-old sister was diagnosed with breast cancer two weeks ago. <br />
<br />
Ben was in the hospital for some unknown infection when my mom and I got the call. We stood behind his bed and sobbed. Pulling ourselves together only when Ben took his headphones off and demanded to know what on earth was so sad. I sat down on the bed and began explaining: "You know how you have cancer? Well, Aunt Tera has cancer too. And we're sad because cancer can be scary sometimes." He responded, "Aunt Tewa will get a port like me [pointing to his heart]. Then she is done. That is not sad or scary." From the mouths of babes...<br />
<br />
Tera is undergoing testing right now and will have a treatment plan nailed down in a couple of weeks. You can follow her progress/story on her facebook page: <a href="https://www.facebook.com/TeraFightsLikeAGirl">https://www.facebook.com/TeraFightsLikeAGirl</a><br />
<br />
One of her tests is a genetic test. Breast cancer "runs in the family" so we all suspect she will test positive for one of the genetic markers. If she does, I have to go get a test done as well. If it's positive, it is likely that a double mastectomy will be recommended, along with a oophorectomy (removal of ovaries)/hysterectomy. (I'm hoping for the oophorectomy, just so I can say I've had that done. What a hilarious word.)<br />
<br />
So. Cancer. You effing bastard. First come after my son, then my sister, then threaten me. You threaten us with death. You force us to maim our bodies. You steal precious memories that will now never happen. You take our future children. You scar our souls. <br />
<br />
Why does tragedy always seem to find my family? How much can one family take? We're about to find out. <br />
<br />
I hate to ruin the ending for you... but everything turns out okay.Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-5274679445049438044.post-26379871040473164952013-06-24T17:11:00.005-07:002013-06-24T17:11:58.252-07:00Benjamin Morris Updates<span style="background-color: white; color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 17px;">Hey Friends! I'm reclaiming my personal facebook page and will be posting all of Benny's updates <a href="https://www.facebook.com/BenMorrisUpdates" target="_blank">here</a>. I'm doing this for a few reasons:</span><br style="background-color: white; color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 17px;" /><br style="background-color: white; color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 17px;" /><span style="background-color: white; color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 17px;">1-Those who know me, know I like my privacy. After the Children's Leukemia Foundation posted Ben's pic last Monday (so cool), I got ~30 friend requests from strangers. I like for people to hear about Ben, pray for him, and to spread awareness about children's cancer. I don't like for strangers to know about everything (and everywhere and everyone).</span><br style="background-color: white; color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 17px;" /><br style="background-color: white; color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 17px;" /><span style="background-color: white; color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 17px;">2-I have a crazy neighbor. Time to adjust the privacy settings back to strict. Remind me to tell you this story next time I see you. :)</span><br style="background-color: white; color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 17px;" /><br style="background-color: white; color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 17px;" /><span style="background-color: white; color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 17px;">3-Some people (like friends of our parents and grandparents, colleagues and <i>their</i> friends and families, and entire congregations of churches we have never visited) have been following us and praying for us since February. They don't know me or Mike. This is a way for them to stay in the know. These people are our angels. </span><br style="background-color: white; color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 17px;" /><br style="background-color: white; color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 17px;" /><span style="background-color: white; color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 17px;">4-I wanted a way that Mike, mom and dad, and Richard and Kathy could post updates when I am too tired/sick/out of commission to do so. We are about to enter a phase where Benny will be hospitalized for inpatient care every other week. It's treacherous. But we have all pulled together and worked out a schedule so that I can work for most of the times he inpatient. They can all post in one place now!</span><br style="background-color: white; color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 17px;" /><br style="background-color: white; color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 17px;" /><span style="background-color: white;"><span style="color: #333333; font-family: lucida grande, tahoma, verdana, arial, sans-serif; font-size: x-small;"><span style="line-height: 17px;">5-I've seen how successful the Team Emerson page has been. Team Emerson has been an incredibly hopeful and happy place to "visit" each day. I was so afraid a page dedicated to Ben's illness would be a terribly sad place. But Team Emerson has shown me that positivity, joy, and even humor is possible. The Poindexter/Meredith Family is a huge blessing to us. (<a href="https://www.facebook.com/TeamEmersonAutumn?fref=ts" target="_blank">If you haven't "liked" their page yet, please do so.</a> Cancer is evil, but it brings us all together in a special way. Love abounds where evil exists.)</span></span></span><br style="background-color: white; color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 17px;" /><br style="background-color: white; color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 17px;" /><span style="background-color: white; color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 17px;">6-I wanted to provide an opportunity for my personal facebook friends to opt out of pediatric cancer. I talk about it a lot. And it's freaking sad. And the constant reminders bum people out or take a toll, and I get it. Really. I totally get it. Now we can be friends and participate in each other's world without being bombarded with seriously sad stuff. </span><br style="background-color: white; color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 17px;" /><br style="background-color: white; color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 17px;" /><span style="background-color: white; color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 17px;">Thanks everyone for liking this page! </span><br style="background-color: white; color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 17px;" /><br style="background-color: white; color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 17px;" /><a href="https://www.facebook.com/BenMorrisUpdates">https://www.facebook.com/BenMorrisUpdates</a> Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-5274679445049438044.post-57220261027594335952013-06-23T19:22:00.003-07:002013-06-23T19:22:42.992-07:008 Things I Have Discovered So FarIt's been an incredible journey so far and we're nowhere near done. But here's 8 things I have discovered in the last three months. <br />
<br />
8. <b>Why not us?</b> Instead of why me? Why us? Why him? I have begun to turn that around. The odds are not in our favor. But it's not a 100% death sentence, so that means SOMEONE out there survives this. Why not us?<br />
<br />
7. <b>Just keep swimming, just keep swimming, just keep swimming swimming swimming. </b> Oh the things Pixar has taught me. Sometime you just have to go through the motions. When that time comes, it helps to hum a happy tune.<br />
<br />
6. <b>The alternative is unacceptable. Period. </b> So I hold his little arms when getting poked. I make family, friends, and strangers alike sanitize. I make co-workers send me an e-mail instead of walking 20 feet to my desk if they're sniffly... just in case. I keep a ziploc baggie with a doctor's note and facemask in it just in case I get pulled over, so the officer won't freak out by our masks (and the necessity for him/her to wear one). I sign documents that state that I am aware that the "medicine" that they are about to shove into my child's blood is toxic, and might kill him. I do all of this stuff because I must. Because the alternative is unacceptable.<br />
<br />
5. <b>I am a crazy person, and that's okay.</b> Those who love me, understand. Those who don't, well... point and laugh. I'm good with either of these scenarios.<br />
<br />
4.<b> I am surrounded by lovely people.</b> Maybe it's because I am in the Midwest/Bible Belt/relatively small town. But the kindness of the people who surround me is downright weird. I thought the world was going to hell in a handbasket! It's all over facebook 24/7! (Thanks a lot, Obama.) But that is simply is not my experience.<br />
<br />
3. <b>Don't sweat the small stuff. </b>Nothing like cancer to provide a healthy dose of perspective. Oh, that waitress screwed up your sandwich? Dude... it's a pickle. Flat tire on you way to an important meeting? Dude... send a photo text to your boss and then work on your tan while waiting on OnStar. After cancer, <i>everything</i> is "small stuff."<br />
<br />
2. <b>When in doubt, laugh.</b> And try to get those around you smiling as well.<br />
<br />
1. <b>Don't eat hospital food... ever.</b> You WILL pay the piper.<br />
<br />
<br />Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-5274679445049438044.post-29515743358187286812013-06-19T11:04:00.000-07:002013-06-19T11:04:09.151-07:00So Your Kid Has CancerWe learned on Monday that the daughter of some friends of ours was diagnosed with leukemia. We're still waiting on bone marrow results to know if it's Pre-B, T-Cell, ALL or AML, and a host of other variables.<br />
<br />
First of all, I am so angry. We had counseling on Monday and I expressed:<br />
"I am so livid. I'm beyond pissed. And while I know it's not logical, the reason I'm mad is because the statistics for childhood cancer is 1 in 10,0000. I don't know 10,000 people. So in my head, no one I know is going to have to go through this. I took this hit. I carried this statistical burden for everyone I know. No other Mommies will have to watch their babies whither."<br />
<br />
Dr. Keith's response: "It's not right. It's not fair. But it still happens."<br />
<br />
Other of our mutual friends have expressed a crises of faith. If God is so, big, so strong and so mighty... why the hell do kids get cancer?! (Sidebar: Don't tell people that Satan caused their child's cancer. It makes you an idiot.)<br />
<br />
Also this week, Ben was featured on the Childhood Leukemia Foundation's facebook page. It was pretty cool! Lots of encouragement from strangers on a day I really needed to hear it was great. <br />
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<a href="http://2.bp.blogspot.com/--U_4MHAr8rE/UcHrY9vCfqI/AAAAAAAABJ4/y3sdxyRLLAA/s1600/Ben+on+FB.PNG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="216" src="http://2.bp.blogspot.com/--U_4MHAr8rE/UcHrY9vCfqI/AAAAAAAABJ4/y3sdxyRLLAA/s320/Ben+on+FB.PNG" width="320" /></a></div>
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But then I heard from Samantha. Then I heard from 3-4 other moms who kids were diagnosed with ALL recently. They all needed some help with the first weeks of diagnosis. So I started to put together a list of all of the things a parent might need for the first few weeks after diagnosis.</div>
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***If you happened upon this page from a search result or on a link to other resource sites, I'm guessing your child was recently diagnosed. I'm so sorry for what you are going through. Comment or send me an e-mail if you need to talk or have questions.***</div>
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For hospital stays:</div>
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<ul>
<li>Button down shirts to easily access the port.</li>
<li>3-ring binder with page protectors. They give you tons of printed paperwork for meds. They hand you a ton of resources. Plus prescriptions. Plus instructions. Plus.... lots of paper. </li>
<li>Notepad to write down instructions and list of people to thank and questions to ask the doctor or nurses. Or doodle. </li>
<li>Pillowcases. Yes, hospitals provide these. But one of Ben's side effects from the steroids was night sweats. He went through 6 pillowcases a night sometimes. It's just easier to have a stack to get you through the night.</li>
<li>Activity bags. If you have friends who are teachers, ask them to put together one activity that will fit in a gallon ziploc bag. Pinterest people, I'm talking to you! </li>
<li>A board game. Because board games are awesome. But also because it gives people something to do when they come for a visit. Childhood cancer is sad. But no one can be sad if they're playing a boardgame. </li>
<li>Quarters for machines</li>
<li>House shoes</li>
<li>Instant coffee. Besides putting hole in your stomach, I think the last time the coffee machine was cleaned on our floor was in the 80s. It was just gross. If you have a Keurig, go that route. Otherwise, just add water coffee and tea is your friends.</li>
<li>Koozies. </li>
<li>A canvas fabric bin or two. It helps to have a "catch all" and keep your room from getting out of hand. "stuff" tends to accumulate.</li>
<li>Command strips. So you can hang awesome stuff on the wall.</li>
<li>Low calorie snacks. Steroids make your kid stupid hungry. And you tend to be lethargic/inactive in the hospital. No one needs to gain a ton of weight. </li>
<li>Yoga mat. Hospital accommodations for parents are... lacking. I did a lot of stretching and yoga and still ended up with back trouble.</li>
<li>CD/MP3 player or plug in speakers for your phone. For nighttime and impromptu dance parties.</li>
<li>A calendar to transpose her protocol/roadmap/appointments on to. They work in Day 1-29, not June 17-???. It can be confusing.</li>
<li>Your sense of humor. If you don't laugh about it, you cry about it. Choose joy.</li>
</ul>
<div>
So be thinking of Emerson Meredith, and her parents Josh and Samantha. They are beginning an incredible journey that will test them to their core. But they will succeed, just as Ben and me and our family will. Because we must.</div>
<div>
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Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-5274679445049438044.post-8418454222726579902013-06-04T15:05:00.000-07:002013-06-04T15:05:58.122-07:00May, Part OneWow! What a month! May went excruciatingly slow and mind-blowingly fast all at the same time! Here are the highlights:
• <br />
<br />
<br />
<ul>
<li>May 5: <a href="http://www.newson6.com/story/22175523/squeegee-wielding-super-heroes-scale-tulsa-childrens-hospital?fb_action_ids=10200703440939982&fb_action_types=og.recommends&fb_source=aggregation&fb_aggregation_id=288381481237582">Superheroes visited the hospital</a> while we were there getting treatment. </li>
</ul>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="http://1.bp.blogspot.com/-6xBudvkSi-c/Ua5TMbc0xfI/AAAAAAAABIw/g_DIqpSu4gI/s1600/2470835_G.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="180" src="http://1.bp.blogspot.com/-6xBudvkSi-c/Ua5TMbc0xfI/AAAAAAAABIw/g_DIqpSu4gI/s320/2470835_G.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">It was super cool!</td></tr>
</tbody></table>
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<br />
<ul>
<li> May 6: My dad finished assembling the new playground (complete with a cool new fence)!</li>
</ul>
<iframe frameborder="0" height="720" src="https://www.facebook.com/video/embed?video_id=577354578965413" width="1280"></iframe><br />
<ul>
<li>May 7: Successful day of chemo and still CNS1 (negative for leukemia in his central nervous system=no radiation=lower risk of long term side effects)</li>
</ul>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="http://1.bp.blogspot.com/-hCWumrNLnXQ/Ua5TNzTmFtI/AAAAAAAABJU/hc-yId4217k/s1600/May+7.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="238" src="http://1.bp.blogspot.com/-hCWumrNLnXQ/Ua5TNzTmFtI/AAAAAAAABJU/hc-yId4217k/s320/May+7.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Certain long-term side effect: being spoiled with Oreos on command. Okay... he comes by that honestly.</td></tr>
</tbody></table>
<br />
<ul>
<li>May 11: Blood Transfusion </li>
</ul>
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<div class="separator" style="clear: both; text-align: center;">
<a href="http://2.bp.blogspot.com/-O3f6Q4WIUqY/Ua5TMcZ85PI/AAAAAAAABI0/bM9eW1Jrjf0/s1600/485434_10200723426519609_223719399_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="http://2.bp.blogspot.com/-O3f6Q4WIUqY/Ua5TMcZ85PI/AAAAAAAABI0/bM9eW1Jrjf0/s320/485434_10200723426519609_223719399_n.jpg" width="240" /></a></div>
<ul>
<li>May 12: MOTHER’S DAY! </li>
</ul>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="http://4.bp.blogspot.com/-LVtjeatwZvw/Ua5TNCQg-xI/AAAAAAAABJc/Ae2eLTNAsyw/s1600/946022_10151671226246654_1292136590_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="http://4.bp.blogspot.com/-LVtjeatwZvw/Ua5TNCQg-xI/AAAAAAAABJc/Ae2eLTNAsyw/s320/946022_10151671226246654_1292136590_n.jpg" width="228" /></a></div>
<ul>
<li> May 15: Bartlesville MOPS put together these awesome games for Ben for when he is in the hospital. It makes the trips so much better/easier/FUN!</li>
</ul>
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<a href="http://2.bp.blogspot.com/-sziPCZC-wws/Ua5TNBdEOEI/AAAAAAAABJM/xdoHFa4P3VI/s1600/947006_10200744593408768_1279671683_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="238" src="http://2.bp.blogspot.com/-sziPCZC-wws/Ua5TNBdEOEI/AAAAAAAABJM/xdoHFa4P3VI/s320/947006_10200744593408768_1279671683_n.jpg" width="320" /></a></div>
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Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-5274679445049438044.post-36375690699616968112013-05-02T14:19:00.000-07:002013-05-02T16:05:26.599-07:00Minimal Residual DiseaseWhat. A. Week.<br />
<br />
A simple half day appointment and spinal tap turned into a 3-day stay in St. Francis. So here's the best way I've come up with to explain MRD and how it affects Ben.<br />
<br />
The first phase of treatment is Induction. If you were to give us a letter grade on how induction went, we would get a "D-". Technically we "passed" and are in remission, but we have to take the remedial courses now.<br />
<br />
When diagnosed, Ben met the criteria for <i>Standard Risk</i>. There is also <i>High Risk</i> and <i>Very High Risk</i>. Because of his MRD, he is now considered in the <i>Very High Risk</i> group. What this means is that he has a much higher probability of relapse and lower chance for a cure. The numbers vary, depending on what study you're reading. Here's another way of looking at it:<br />
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<a href="http://1.bp.blogspot.com/-ptb-t5RZd7E/UYLTiSJZMsI/AAAAAAAABHQ/j8e2aHYeUWU/s1600/MRD.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="345" src="http://1.bp.blogspot.com/-ptb-t5RZd7E/UYLTiSJZMsI/AAAAAAAABHQ/j8e2aHYeUWU/s640/MRD.JPG" width="640" /></a></div>
<br />
Notice how you have to be less than .01% and we're at .4% meaning ours is particularly high (meaning our cure rate is that much lower).<br />
<br />
So we're now receiving a daily oral dose of chemo, and he will be going to St. Francis to get chemo through his port a whopping FOUR times per WEEK!<br />
<br />
Here's the thing. They are going to kill his immune system. Kids who die of leukemia usually die from infection or organ failure, not actual leukemia cells in the blood. They can kill the cancer. The trick is not killing Ben. <br />
<br />
SO:<br />
<br />
<ul>
<li>Classified as Very High Risk</li>
<li>Lots more Chemo at Lots higher doses</li>
<li>More intense side effects</li>
<li>Lots more risk for relapse (relapse = lowest survival rates)</li>
<li>Higher chance a bone marrow/stem cell transplant will be needed</li>
<li>Even greater chance of infection and organ damage</li>
<li>More frequent clinic visits and hospital stays (we anticipate at some point being admitted for a month or two).</li>
<li>We were removed from all clinical trials, because we are no longer eligible. (I don't know why this one in particular is bothering me so much.)</li>
</ul>
<div>
In other words:</div>
<div>
Damnit. This is shitty.</div>
<br />
<br />Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-5274679445049438044.post-23682669871364790472013-05-02T12:30:00.001-07:002013-05-02T12:30:40.439-07:00Generous<div class="separator" style="clear: both; text-align: center;">
<a href="http://2.bp.blogspot.com/-FZPKTDplYFc/UXr3KZDHFoI/AAAAAAAABF0/W9raw0AafG8/s1600/Generous.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="275" src="http://2.bp.blogspot.com/-FZPKTDplYFc/UXr3KZDHFoI/AAAAAAAABF0/W9raw0AafG8/s640/Generous.JPG" width="640" /></a></div>
<br />
We had a pretty incredible experience last Thursday. First of all, Mike works for Phillips 66 and I work for OakTree Software on the ConocoPhillips Windows 7 project. I left my job of 7 years in July; Mike left his job of 5 years in September. We're both new to this organization. So when our colleagues, supervisors, and work acquaintances learned of Ben's diagnosis, we were gratefully surprised by the outpouring of support. Most of them have known us for only a few short months!<br />
<br />
Mike's dad has worked for the company for decades (sorry, Richard). As he passed an old friend in the tunnels a few weeks ago with his freshly shaved head from the Bald for Ben night, I doubt he would have ever guessed the chain of events that would take place.<br />
<br />
Rob learned about Ben, about us, and about what our family was going through. He took action!<br />
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<a href="http://2.bp.blogspot.com/-GWrbMe_uwvU/UYK8nRmn5EI/AAAAAAAABHA/uf464xlP_Bw/s1600/DSC02198.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="http://2.bp.blogspot.com/-GWrbMe_uwvU/UYK8nRmn5EI/AAAAAAAABHA/uf464xlP_Bw/s320/DSC02198.JPG" width="320" /></a></div>
<br />
Rob auctioned off swipes of the clippers on his hair! When he first started, we all suspected he might raise a couple hundred dollars. Instead, he raised a couple THOUSAND! Plus additional donations to St. Jude's in Ben's honor!<br />
<br />
His generosity and the generosity of his team and co-workers has enabled us to purchase this for Ben, who in a few weeks as the intensification phase begins will no longer be allowed to go to the park for risk of infection.<br />
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<tr><td style="text-align: center;"><a href="http://2.bp.blogspot.com/-JcjLVeIvh2I/UXr0WkWC3rI/AAAAAAAABFk/ObrZogOvcTw/s1600/Playground.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="http://2.bp.blogspot.com/-JcjLVeIvh2I/UXr0WkWC3rI/AAAAAAAABFk/ObrZogOvcTw/s320/Playground.JPG" width="315" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Big Brother Ethan is pretty stoked about it, too!</td></tr>
</tbody></table>
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The remaining donations will go towards his medical bills.</div>
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Strangers to us, did this for us. We're unceasingly in awe of what people have done in support of our little boys. </div>
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<br />Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-5274679445049438044.post-4845290406005936592013-04-24T12:58:00.000-07:002013-04-25T15:12:45.567-07:00Extreme Makeover: Cancer Edition<div class="separator" style="clear: both; text-align: left;">
Here is what one month of steroids does to little boys. It still amazes me how much his little body has changed in such a short amount of time. I feel sad for him, frustrated that the treatment is so harsh. There's got to be a better way to cure this. There just has to be.</div>
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<br />Unknownnoreply@blogger.com2tag:blogger.com,1999:blog-5274679445049438044.post-89849034616077626792013-04-19T10:38:00.000-07:002013-05-13T12:01:52.311-07:00Warrior Dash<div class="separator" style="clear: both; text-align: center;">
<a href="http://1.bp.blogspot.com/-N8aANK_Hrv0/UXGNAbSRpRI/AAAAAAAABE4/NtTn8M3BJnM/s1600/Team+Benjamin.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="180" src="http://1.bp.blogspot.com/-N8aANK_Hrv0/UXGNAbSRpRI/AAAAAAAABE4/NtTn8M3BJnM/s640/Team+Benjamin.png" width="640" /></a></div>
<h4 style="text-align: center;">
<span style="font-family: Courier New, Courier, monospace; font-size: x-large;"><b><a href="https://waystohelp.stjude.org/sjVPortal/public/displayTeamPage.do?programId=2252&eventId=334121&teamId=26058" target="_blank">JOIN TEAM BENJAMIN AND SIGN UP TO RUN THE 2013 WARRIOR DASH</a></b></span></h4>
<div>
<span style="font-family: Courier New, Courier, monospace;"><br /></span></div>
<div>
<span style="font-family: Courier New, Courier, monospace;">STEP ONE: CLICK THE LINK ABOVE</span></div>
<div>
<span style="font-family: Courier New, Courier, monospace;"><br /></span></div>
<div>
<span style="font-family: Courier New, Courier, monospace;">STEP TWO: CLICK "JOIN THIS TEAM"</span></div>
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<a href="http://3.bp.blogspot.com/-GOS_IuTAX3U/UXGOd8ZksoI/AAAAAAAABE8/Xa5Hr9S7fuA/s1600/CLICK+JOIN+THIS+TEAM.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="332" src="http://3.bp.blogspot.com/-GOS_IuTAX3U/UXGOd8ZksoI/AAAAAAAABE8/Xa5Hr9S7fuA/s400/CLICK+JOIN+THIS+TEAM.png" width="400" /></a></div>
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<span style="font-family: Courier New, Courier, monospace;"><br /></span></div>
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<span style="font-family: Courier New, Courier, monospace;">STEP THREE: FILL IN YOUR INFO. CHOOSE THE "JOIN A TEAM" OPTION UNDER PARTICIPATION TYPE AND MAKE SURE IT SAYS "BENJAMIN". SET ANY GOAL YOU LIKE, BUT REMEMBER $300 GETS YOU INTO THE VIP TENT! </span></div>
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<span style="font-family: 'Courier New', Courier, monospace;"><br /></span></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="http://2.bp.blogspot.com/-oGSvrEcyi4g/UXGPhquQRDI/AAAAAAAABFE/mfYie3AgdxQ/s1600/TEAM.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="125" src="http://2.bp.blogspot.com/-oGSvrEcyi4g/UXGPhquQRDI/AAAAAAAABFE/mfYie3AgdxQ/s320/TEAM.png" width="320" /></a></div>
<div>
<span style="font-family: 'Courier New', Courier, monospace;">STEP FOUR: <a href="mailto:CASI.L.MORRIS@GMAIL.COM" target="_blank">SEND US A LINK</a> TO YOUR FUNDRAISING PAGE. WE WILL HELP PROMOTE IT!</span></div>
<div>
<span style="font-family: 'Courier New', Courier, monospace;"><br /></span></div>
<div>
<span style="font-family: 'Courier New', Courier, monospace;">THE TEAM WILL GET TOGETHER WITH BEN FOR PICTURES THE DAY OF THE RACE. WE WILL CONTACT YOU WITH A TIME AND PLACE! </span></div>
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Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-5274679445049438044.post-19922368111667559632013-04-18T09:37:00.003-07:002013-04-18T09:37:27.802-07:00Treatment Plan<br />
<div class="MsoNormal">
Phase 1: Induction<o:p></o:p></div>
<div class="MsoNormal">
Basically they throw everything they’ve got at the cancer. At
the end of this phase, he will be in remission (less than 5% leukemic blasts…
remember we started at 70% on March 22)<o:p></o:p></div>
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He takes:<o:p></o:p></div>
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<ul>
<li><span style="font-family: Symbol; text-indent: -0.25in;">·<span style="font-family: 'Times New Roman'; font-size: 7pt;">
</span></span><span style="text-indent: -0.25in;">Dexamethasone – the bastard steroid that we all
HATE.</span><span style="text-indent: -0.25in;"> </span><span style="text-indent: -0.25in;">HATE!</span><span style="text-indent: -0.25in;"> </span><span style="text-indent: -0.25in;">He gets it twice daily. It’s a little white
pill.</span></li>
<li><span style="font-family: Symbol; text-indent: -0.25in;">·<span style="font-family: 'Times New Roman'; font-size: 7pt;">
</span></span><span style="text-indent: -0.25in;">Vincristine – this one is the little baggie with
the Jolly Roger on it that he gets IV-style through his port.</span><span style="text-indent: -0.25in;"> </span><span style="text-indent: -0.25in;">He gets it every Tuesday.</span></li>
<li><span style="font-family: Symbol; text-indent: -0.25in;">·<span style="font-family: 'Times New Roman'; font-size: 7pt;">
</span></span><span style="text-indent: -0.25in;">Asparaginase – this one he gets pushed through a
syringe into his port every Tuesday.</span><span style="text-indent: -0.25in;"> </span><span style="text-indent: -0.25in;">It’s
yellow. </span><span style="text-indent: -0.25in;"> </span><span style="text-indent: -0.25in;">This is also the one with
the</span><span style="text-indent: -0.25in;"> </span><span style="text-indent: -0.25in;">high chance for an allergic
reaction.</span><span style="text-indent: -0.25in;"> </span><span style="text-indent: -0.25in;">“Allergic to Asparagus” is how
I remember it…</span><span style="text-indent: -0.25in;"> </span><span style="text-indent: -0.25in;">Whatever works, right?</span></li>
<li><span style="font-family: Symbol; text-indent: -0.25in;">·<span style="font-family: 'Times New Roman'; font-size: 7pt;">
</span></span><span style="text-indent: -0.25in;">Methotrexate straight into his spine.</span></li>
<li><span style="font-family: Symbol; text-indent: -0.25in;">·<span style="font-family: 'Times New Roman'; font-size: 7pt;">
</span></span><span style="text-indent: -0.25in;">He also gets Pepcid for his tummy</span></li>
<li><span style="font-family: Symbol; text-indent: -0.25in;">·<span style="font-family: 'Times New Roman'; font-size: 7pt;">
</span></span><span style="text-indent: -0.25in;">Mouthwash to prevent/treat mouth sores</span></li>
<li><span style="font-family: Symbol; text-indent: -0.25in;">·<span style="font-family: 'Times New Roman'; font-size: 7pt;">
</span></span><span style="text-indent: -0.25in;">Zofran for Nausea (as needed)</span></li>
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<br /></div>
<div class="MsoNormal">
Phase 2: Intensification<o:p></o:p></div>
<div class="MsoNormal">
Leukemia cells hide. They
find little cracks and crevices in his little body and hide like the cowardly
little bastards they are. This phase
hunts them down, drags them out, and kills them. Think “The Searchers”. The John Wayne version.<o:p></o:p></div>
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I’m not sure yet, but I THINK he will get:<o:p></o:p></div>
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<ul>
<li><span style="font-family: Symbol; text-indent: -0.25in;">·<span style="font-family: 'Times New Roman'; font-size: 7pt;">
</span></span><span style="text-indent: -0.25in;">Vincristine – BTW, this stuff is derived from
the vinca plant.</span></li>
<li><span style="font-family: 'Courier New'; text-indent: -0.25in;">o<span style="font-family: 'Times New Roman'; font-size: 7pt;">
</span></span><span style="text-indent: -0.25in;">Side effects: Constipation and hair loss</span></li>
<li><span style="font-family: Symbol; text-indent: -0.25in;">·<span style="font-family: 'Times New Roman'; font-size: 7pt;">
</span></span><span style="text-indent: -0.25in;">Endoxan/Cytoxan – Thi s stuff attaches itself to
his DNA and turns him into a superhero, Spiderman style.</span><span style="text-indent: -0.25in;"> </span><span style="text-indent: -0.25in;">Ironically, this stuff is a carcinogen.</span></li>
<li><span style="font-family: 'Courier New'; text-indent: -0.25in;">o<span style="font-family: 'Times New Roman'; font-size: 7pt;">
</span></span><span style="text-indent: -0.25in;">Side effects: Nasea and vomiting; diarrhea, hair
loss, lethargy</span></li>
<li><span style="font-family: Symbol; text-indent: -0.25in;">·<span style="font-family: 'Times New Roman'; font-size: 7pt;">
</span></span><span style="text-indent: -0.25in;">Cytarabine-Some sort of inhibitor.</span></li>
<li><span style="font-family: 'Courier New'; text-indent: -0.25in;">o<span style="font-family: 'Times New Roman'; font-size: 7pt;">
</span></span><span style="text-indent: -0.25in;">Side effects: Low blood pressure, metallic food
taste, mouth sores, and hair loss</span></li>
<li><span style="font-family: 'Courier New'; text-indent: -0.25in;">o<span style="font-family: 'Times New Roman'; font-size: 7pt;">
</span></span><span style="text-indent: -0.25in;">Ironically, it also causes AML (the sister
disease of ALL [what Ben has])</span></li>
<li><span style="font-family: Symbol; text-indent: -0.25in;">·<span style="font-family: 'Times New Roman'; font-size: 7pt;">
</span></span><span style="text-indent: -0.25in;">Methotrexate straight into his spine.</span></li>
<li><span style="font-family: Symbol; text-indent: -0.25in;">·<span style="font-family: 'Times New Roman'; font-size: 7pt;">
</span></span><span style="text-indent: -0.25in;">He also gets Pepcid for his tummy</span></li>
<li><span style="font-family: Symbol; text-indent: -0.25in;">·<span style="font-family: 'Times New Roman'; font-size: 7pt;">
</span></span><span style="text-indent: -0.25in;">Mouthwash to prevent/treat mouth sores</span></li>
<li><span style="font-family: Symbol; text-indent: -0.25in;">·<span style="font-family: 'Times New Roman'; font-size: 7pt;">
</span></span><span style="text-indent: -0.25in;">Zofran for Nausea (as needed)</span></li>
</ul>
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<o:p></o:p></div>
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<o:p></o:p></div>
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<o:p></o:p></div>
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I’ve decided this phase is aptly named.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Phase 3: Maintenance Therapy<o:p></o:p></div>
<div class="MsoNormal">
Kill off any residual cells not dead yet. They are few. But doing this prevents
relapse. We’ll do this for 3 years.<o:p></o:p></div>
<div class="MsoNormal">
He’ll get:<o:p></o:p></div>
<div class="MsoListParagraphCxSpFirst" style="mso-list: l2 level1 lfo3; text-indent: -.25in;">
</div>
<ul>
<li><span style="font-family: Symbol; text-indent: -0.25in;">·<span style="font-family: 'Times New Roman'; font-size: 7pt;">
</span></span><span style="text-indent: -0.25in;">Oral mercaptopurine daily</span></li>
<li><span style="font-family: Symbol; text-indent: -0.25in;">·<span style="font-family: 'Times New Roman'; font-size: 7pt;">
</span></span><span style="text-indent: -0.25in;">Oral methotrexate weekly</span></li>
<li><span style="font-family: Symbol; text-indent: -0.25in;">·<span style="font-family: 'Times New Roman'; font-size: 7pt;">
</span></span><span style="text-indent: -0.25in;">Once a month we’ll go in for a 5-day course of
IV vincristine and those evil steroids</span></li>
<li><span style="font-family: Symbol; text-indent: -0.25in;">·<span style="font-family: 'Times New Roman'; font-size: 7pt;">
</span></span><span style="text-indent: -0.25in;">A whole bunch of other stuff I don’t know about
yet.</span></li>
</ul>
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<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
So yeah, that’s the plan. Lots and lots of details that aren’t figured
out yet. <o:p></o:p></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<i>But we are sure we will be fine. <o:p></o:p></i></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<i>And I’ll need the help of lots of
red wine.<o:p></o:p></i></div>
Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-5274679445049438044.post-9366550196154645462013-04-11T07:20:00.001-07:002013-04-11T07:20:14.497-07:00Bald for Ben<iframe class="imgur-album" width="100%" height="550" frameborder="0" src="http://imgur.com/a/ngoX2/embed"></iframe>Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-5274679445049438044.post-20689749265229994662013-04-11T06:24:00.001-07:002013-04-11T06:24:27.376-07:00What it's like for Ben to Get ChemoOur chemo schedule is every Tuesday morning. This past Tuesday morning, Great Great Great Granny came along and snapped some pictures.<div class="separator" style="clear: both; text-align: center;">
<a href="http://1.bp.blogspot.com/-MHI-agoY-B0/UWa4TPhX9HI/AAAAAAAABDc/ZcdnFgwpGTM/s1600/Ben's+Poke+Gift.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="http://1.bp.blogspot.com/-MHI-agoY-B0/UWa4TPhX9HI/AAAAAAAABDc/ZcdnFgwpGTM/s320/Ben's+Poke+Gift.jpg" width="265" /></a></div>
<div class="separator" style="clear: both; text-align: center;">
Step One: Get a prize.</div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="http://2.bp.blogspot.com/-IMvmMy8lrhM/UWa4lntwMZI/AAAAAAAABDw/zgFTbzWpmYU/s1600/DSC_0244.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="http://2.bp.blogspot.com/-IMvmMy8lrhM/UWa4lntwMZI/AAAAAAAABDw/zgFTbzWpmYU/s320/DSC_0244.JPG" width="270" /></a></div>
<div class="separator" style="clear: both; text-align: center;">
Step Two: get the tube put in. (AKA Alien invasion)</div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="http://3.bp.blogspot.com/-EDEFZdDDPek/UWa4mLBdOPI/AAAAAAAABD4/4c51MWO9xds/s1600/DSC_0246.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="http://3.bp.blogspot.com/-EDEFZdDDPek/UWa4mLBdOPI/AAAAAAAABD4/4c51MWO9xds/s320/DSC_0246.JPG" width="228" /></a><a href="http://3.bp.blogspot.com/-kLP0zOX-04A/UWa4lkr5tDI/AAAAAAAABD0/WGAXBB8bODA/s1600/DSC_0245.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="231" src="http://3.bp.blogspot.com/-kLP0zOX-04A/UWa4lkr5tDI/AAAAAAAABD0/WGAXBB8bODA/s320/DSC_0245.JPG" width="320" /></a></div>
<div class="separator" style="clear: both; text-align: center;">
Step Three: Physical exam time. Gotta listen to that tummy!</div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="http://4.bp.blogspot.com/-grai6YNSxn0/UWa4oJBYa9I/AAAAAAAABEE/Kybbe89fuxY/s1600/DSC_0247.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="234" src="http://4.bp.blogspot.com/-grai6YNSxn0/UWa4oJBYa9I/AAAAAAAABEE/Kybbe89fuxY/s320/DSC_0247.JPG" width="320" /></a></div>
<div class="separator" style="clear: both; text-align: center;">
Step Four: Wait around for awhile.</div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="http://3.bp.blogspot.com/-fYOUqVS0Ht4/UWa4peyjHMI/AAAAAAAABEU/QQg5VjOeRUs/s1600/DSC_0250.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="223" src="http://3.bp.blogspot.com/-fYOUqVS0Ht4/UWa4peyjHMI/AAAAAAAABEU/QQg5VjOeRUs/s320/DSC_0250.JPG" width="320" /></a></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="http://3.bp.blogspot.com/-bnoemGfsiKc/UWa4q9i_QaI/AAAAAAAABEc/xJiQl7S0Xx0/s1600/DSC_0252.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="253" src="http://3.bp.blogspot.com/-bnoemGfsiKc/UWa4q9i_QaI/AAAAAAAABEc/xJiQl7S0Xx0/s320/DSC_0252.JPG" width="320" /></a>Step Five: Nurse Diane comes to try to get blood and push meds.<a href="http://1.bp.blogspot.com/-R7N55lcbzgU/UWa4o1lhmeI/AAAAAAAABEQ/5XhXTf2IVXs/s1600/DSC_0251.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="http://1.bp.blogspot.com/-R7N55lcbzgU/UWa4o1lhmeI/AAAAAAAABEQ/5XhXTf2IVXs/s320/DSC_0251.JPG" width="274" /></a></div>
<div class="" style="clear: both; text-align: center;">
Step Six: Time to take the Tube out!</div>
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<br /></div>
<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="http://3.bp.blogspot.com/-5NozST2NGDk/UWa4q6elBLI/AAAAAAAABEo/VUPejIcqK9o/s1600/DSC_0253.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="244" src="http://3.bp.blogspot.com/-5NozST2NGDk/UWa4q6elBLI/AAAAAAAABEo/VUPejIcqK9o/s320/DSC_0253.JPG" width="320" /></a></div>
<div class="separator" style="clear: both; text-align: center;">
Step Seven: Tube is OUT! See the smooth skin? All that shows is a little needle prick (like a flu shot).</div>
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<br /></div>
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<br /></div>
<div>
<br /></div>
Unknownnoreply@blogger.com2tag:blogger.com,1999:blog-5274679445049438044.post-57936193158684676672013-04-06T09:00:00.001-07:002013-04-06T09:00:18.068-07:00Dark Cloud of Doom<div class="separator" style="clear: both; text-align: center;">
</div>
<div style="margin-left: 1em; margin-right: 1em;">
<img src="https://encrypted-tbn1.gstatic.com/images?q=tbn:ANd9GcTQp8e2Hp0yl5z4e0GaS_5gXECG_VUIf8-e1WPhekb2xM4YvpKt" /></div>
<br />
<br />
That's me. <br />
<br />
My kid has cancer. <br />
<br />
This is sad.<br />
<br />
But no one would describe me as a sad or melancholy person. But people expect me to be sad. But I don't want to be sad all the time. It sucks. <br />
I walk around feeling like a dark gray cloud over the world; people look at me and feel sad. I don't like having that kind of impact on people. That's not how I roll. I make people happy, or try to. I laugh at myself and make fun of celebrities and stupid things people do. <br />
<br />
I know people are concerned and scared for me. I know people are nervous about saying or doing the wrong thing. <br />
<br />
But I don't want you to be unhappy.<br />
<br />
<br />
<br />
<br />Unknownnoreply@blogger.com2tag:blogger.com,1999:blog-5274679445049438044.post-40971395937303917792013-04-04T07:28:00.001-07:002013-04-04T07:28:42.028-07:00Top TenHere are the things I think, but don't say:<br />
<br />
1. I don't want him to die. And when I think about that 5-10% I burst into tears and hyperventilate.<br />
<br />
2. I'm terrified. You know when you're watching a scary movie and the music picks up and you know something is about to jump out and your adrenaline starts pumping? That's me, 24/7.<br />
<br />
3. I feel guilty. Did I do something in this life or the last to cause this? Maybe if I were healthier during pregnancy? Maybe if I was a stay-at-home mom? Maybe if I read to him more? Maybe if I forced him to eat those damn carrots?<br />
<br />
4. I'm pissed. I'm so angry. I know what he is being robbed of, what he is going to have to physically endure, and I'm mad as hell. <br />
<br />
5. I'm scared of what cancer is going to cost us, financially. And then feel guilty for worrying about money when his life is on the line.<br />
<br />
6. I pity Ethan. I grew up with a chronically ill sibling. It sucks. <br />
<br />
7. I'm scared that our family and friends are going to get sick of dealing with us. That in a few weeks, the texts and posts and cards and encouragement will stop. I'm afraid everyone will "get used to it" and that when this happens, I will fall apart. Because that's all that's keeping me together right now.<br />
<br />
8. I want my little boy back. The steroids leave him asking for food all the time. They cause roid rage. Who is this child that throws plates and screams at me? Why am I not more grateful that he is here? Who cares if he is a beast?<br />
<br />
9. I'm scared to be his sole caretaker. If he dies, it's my fault. I'm scared to let anyone else do it. No one loves him as much as I do.<br />
<br />
10. I'm sad. I'm sad that our life as we knew it is over. We have a new life now. I'm sad for what cancer has done to us, for what it's still going to do to us.<br />
<br />
<br />Unknownnoreply@blogger.com3tag:blogger.com,1999:blog-5274679445049438044.post-75361060068294750292013-04-02T15:16:00.002-07:002013-04-02T15:16:15.721-07:00The Bald and the Beautiful<div class="separator" style="clear: both; text-align: center;">
</div>
<div style="margin-left: 1em; margin-right: 1em;">
</div>
<br />
<br />
Ben's going to lose his hair. Not maybe, not might. It's going to happen. I figure he and Ethan will freak out if we just let it fall out . So we will shave it.<br />
<br />
On Sunday, April 7 at 6pm we will be having a Shaving Party at Regis in the Washington Park Mall. Several family members and friends (and friends' kids) will join Ben for the most awesome group haircut party ever! (FYI: A local news channel is interested in coming down to do a story... we'll see if it works out!)<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="http://www.shopstamfordtowncenter.com/asset/get.asp?asset_id=3377" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://www.shopstamfordtowncenter.com/asset/get.asp?asset_id=3377" /></a></div>
<br />
<br />
If you want to join in, let me know via facebook or <a href="mailto:casi.l.morris@gmail.com" target="_blank">e-mail</a>. I'll need a head count by Friday!<br />
<br />
In related news, I guess I've been doing too much googling of hair loss:<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="http://3.bp.blogspot.com/-Rv3M81c8OgI/UVtXb6yhvyI/AAAAAAAABDM/fG_pIlqVjC8/s1600/bosley.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="20" src="http://3.bp.blogspot.com/-Rv3M81c8OgI/UVtXb6yhvyI/AAAAAAAABDM/fG_pIlqVjC8/s640/bosley.JPG" width="640" /></a></div>
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<br /></div>
<div class="separator" style="clear: both; text-align: center;">
Yes, Bosley. Yes, we do. </div>
Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-5274679445049438044.post-25751548713643949432013-04-02T14:55:00.000-07:002013-04-02T14:59:53.152-07:00Our First Outpatient ChemoI believe in aliens, and their probes.<br />
<br />
First of all, in my insane 5am grogginess, I let Ben have a bowl of cereal on a DOE day (no food or drinks after midnight). I cried in the shower, because I was certain I'd just let cancer kill my kid. Logic, schmogic.<br />
<br />
Second of all, we had to take his dressing off of his port wound. Blaeuagh!! Thank goodness Mike is a trooper; Mommy nearly passed out. Then we had to put the numbing lotion stuff on his port. I reminded Mike to use gloves. Next time... I won't. [Insert Maniacal Laugh]<br />
<br />
So Ben FREAKED OUT at having anything sticky put on him (band-aids included) so we wrapped him up in Saran Wrap to keep the numbing lotion in place. It was red. He was festive.<br />
<br />
Drove to Tulsa in the rain, which set a menacing tone over the day. About Tulsa city limits I thought "this is straight out of a goddamned Nicholas Sparks novel." Anywho, we got in and Dr. K did a physical exam and we ran some labs and then... it was time.<br />
<br />
Oh.<br />
Dear.<br />
Lord.<br />
<br />
It looked like the tail/probe thing from Transformers 2 when that chick WAY out of Shie Lebouf's league turned into a murdering robot... You remember the scene:<br />
<div class="separator" style="clear: both; text-align: center;">
<iframe allowfullscreen='allowfullscreen' webkitallowfullscreen='webkitallowfullscreen' mozallowfullscreen='mozallowfullscreen' width='320' height='266' src='https://www.youtube.com/embed/4-ne0gyDsZo?feature=player_embedded' frameborder='0'></iframe></div>
<div class="separator" style="clear: both; text-align: center;">
Waaaaaay out of his league; really should have seen that coming.</div>
<div class="" style="clear: both; text-align: center;">
<br /></div>
<br />
So they jabbed this thing in to his chest, and then hooked tubes up to it, then pumped him full of poison.<br />
<br />
Which brings me to another topic. Why are we curing cancer with poison? It seems so archaic. I half expect them to bleed him with leeches next time we're in the office.<br />
<br />
So anyway, we finished the chemicals, then went down to have a Spinal Tap<br />
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="http://cinemakc.com/wp-content/uploads/2011/10/this-is-spinal-tap.jpeg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="http://cinemakc.com/wp-content/uploads/2011/10/this-is-spinal-tap.jpeg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-size: xx-small; text-align: start;">Not this kind of Spinal Tap, but you sleep through it all the same.</span></td></tr>
</tbody></table>
<br />
<br />
<br />
Then it was grocery store, then home to nap (me, not him).<br />
<br />
We survived to fight another day!<br />
<br />
<br />
<br />
<br />Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-5274679445049438044.post-50034146378590533612013-04-02T14:24:00.001-07:002013-04-02T14:24:04.494-07:00My Little DruggieI used to worry about my kids in their teens and "the college years"... I never imagined my 4-year-old would have more drugs in his system than Lindsay Lohan. These are just the ones he takes orally. They pump him full of many many more on Chemo Days!<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="http://3.bp.blogspot.com/-lytzdKWg5Zw/UVtMQI6RKeI/AAAAAAAABC8/o6ub6gX7NNQ/s1600/meds.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="300" src="http://3.bp.blogspot.com/-lytzdKWg5Zw/UVtMQI6RKeI/AAAAAAAABC8/o6ub6gX7NNQ/s400/meds.jpg" width="400" /></a></div>
<br />Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-5274679445049438044.post-91380870816464080362013-04-01T08:26:00.001-07:002013-04-01T08:26:24.313-07:00Our First Stay at the Hospital<img alt="Photo: Good Morning!" src="https://sphotos-a.xx.fbcdn.net/hphotos-ash4/p480x480/254972_10200489889321325_1784437947_n.jpg" /><br />
<br />
Doing some coloring...<br />
<br />
<img alt="Photo: In pre-op. Surgery should take an hour." src="https://sphotos-b.xx.fbcdn.net/hphotos-prn1/p480x480/562624_10200490499256573_239407729_n.jpg" /><br />
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Surgery to put the port in...<br />
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<img alt="Photo: Our cookie monster! :)" src="https://sphotos-b.xx.fbcdn.net/hphotos-ash3/p480x480/527824_10200494226589754_803585204_n.jpg" /><br />
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Everyone looks like hell after surgeries... even toddlers. On the other hand, all you can eat cookies!<br />
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<img alt="Photo: It's a BOY!
Getting an EKG! The chemo can damage his heart so we will be doing a few of these to monitor his ticker." src="https://sphotos-a.xx.fbcdn.net/hphotos-prn1/p480x480/64355_10200495461580628_1100997665_n.jpg" /><br />
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Chemo causes heart damage, so we did an EKG to get a baseline. We'll do this every month for awhile. He slept through it...<br />
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<img alt="Photo: Thanks for all the awesome treats!" src="https://sphotos-a.xx.fbcdn.net/hphotos-ash3/p480x480/7994_10200496103796683_1239143706_n.jpg" /><br />
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We got some awesome gifts and cards from friends. Sugar overload!!!<br />
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<img alt="Photo: Granny had to get a blood shot." src="https://sphotos-a.xx.fbcdn.net/hphotos-prn1/p480x480/564719_10200499857690528_846244856_n.jpg" /><br />
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He HATED getting blood draws/lab work done ("blood shots"), so given the opportunity he gave Granny a blood shot. She held him down for one of them, and paybacks are a bitch....<br />
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<img alt="Photo: Blood transfusion underway." src="https://sphotos-b.xx.fbcdn.net/hphotos-ash3/p480x480/538858_10200500717592025_1079371387_n.jpg" /><br />
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His hemoglobin dropped dangerously low, so a blood transfusion was necessary. If you donate blood, thanks! Ben is B-positive.<br />
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<img alt="Photo: Brothers together, again." src="https://sphotos-b.xx.fbcdn.net/hphotos-ash3/p480x480/580422_497387063632132_1699997196_n.jpg" /><br />
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Ethan was promptly kicked out of Ben's bed after this picture was taken!<br />
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<img alt="Photo: Choosing down on some grilled cheese! He is a MUCH happier baby today. Lots more laughing and playing today. :)" src="https://sphotos-b.xx.fbcdn.net/hphotos-prn1/p480x480/559096_10200505105941731_1801832983_n.jpg" /><br />
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The Return of the Appetite<br />
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<img alt="Photo: We're done! No reaction! :)" src="https://sphotos-b.xx.fbcdn.net/hphotos-prn1/p480x480/562197_10200506100526595_1465061703_n.jpg" /><br />
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We made it through another does of chemo with now major side effects or allergic reactions! Awesome sauce.<br />
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<img alt="Photo: And the green beans are GONE!" src="https://sphotos-b.xx.fbcdn.net/hphotos-ash3/p480x480/540084_10200510049585319_1980333168_n.jpg" /><br />
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He craved green beans. Weirdo.<br />
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On Sunday, March 31, EASTER SUNDAY, we got to go HOME!!Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-5274679445049438044.post-65334706476451562352013-04-01T08:10:00.002-07:002013-04-01T09:42:35.649-07:00Warrior Dash: Ben's Team<span style="background-color: white; color: #37404e; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 12.800000190734863px; line-height: 18px;">Sponsor or sign up for Team Benjamin! We'll be there to cheer you on!</span><br />
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<br />Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-5274679445049438044.post-11148322510265568232013-04-01T08:07:00.002-07:002013-04-01T08:07:30.539-07:00All I Got Was This Stupid Sticker<img alt="Photo: Praying for you guys during this scary time..." src="https://sphotos-b.xx.fbcdn.net/hphotos-prn1/p480x480/527664_10200794272722458_1020782801_n.jpg" /><br />
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I actually want this sticker...Unknownnoreply@blogger.com0