Scamper against cancer

Ollie and I crossing the finish line at his first fun run in Spring 2012

Ollie and I crossing the finish line at his first fun run in Spring 2012

For all our Atlanta friends – we have generously been included in an event that honors children fighting cancer, Scamper Against Cancer. This is the fourth year that the Arnette family has hosted a run in memory of their daughter, another brave child who fought cancer. I am always in awe of families who are able to not only survive this experience, but also find a way to honor those lost. It feels like it would be so easy to get lost in darkness.

The event is May 3, and consists of a 5k and a fun run.  One of my favorite experiences ever was doing a fun run with Ollie when he was five. The starting gun went off, and he shot through the crowd – I had to book it to keep up with him. He got winded, and I could tell he was exhausted towards the end, but he persevered, and we crossed the finish line together. Throughout my life, I have found running to be a refuge, so I hope folks are able to take advantage of an opportunity for community running and honoring the memory of Ansley Arnette. Get more information and register at http://www.scamperagainstcancer.com.

 

G-tube

Ollie chillin in his awesome angry birds hospital gown - a gift from a friend that makes days like this a little better.

Ollie chillin in his awesome angry birds hospital gown – a gift from a friend that makes days like this a little better.

After vomiting up three feeding tube in less than a week, Ollie’s doctor recommended a g-tube. This is a device that is surgically implanted right outside of his tummy, connecting it with a tube to administer feedings. Basically the same as a feeding tube, but he can’t vomit this one up. He had the surgery on Friday, and has been in a lot of pain since then.

This has been one of my more frustrating experiences. First, when he had the surgery, the anesthesiologist was rushed and had a quick conversation with me right before the surgery. We talked about using his noodles, and that seemed to be the plan, but when he came back from surgery, he had an IV in his arm. He was of course crying about it – he has had enough terrible experiences with IVs to hate them, and when I asked why it was put it, the nurse said Ollie told the doctor to not use his noodles. I was furious, and demanded that the IV be removed. The nurses were unable to do anything until they got the orders from the doctor, and this was taking a long time. I became very agitated, and the nurse took pity and just removed the IV. The doctor called up to apologize (although it was one of those apologies that is just a bunch of excuses, and she ultimately said it is my job to tell them about any concerns about IVs, even though I was told he would not get an IV). She explained that when Ollie was in the prep room waiting for his surgery, he was very protective of his noodles and said to not pull on them. Based on this, she decided to not use them. I explained to her that this is a conversation for a parent, and a seven-year-old, even one as smart and articulate as Ollie, should NOT make medical decisions. And I made it clear that he was not asking her to not use the noodles, just to be careful with them. Unnecessary pain makes my blood boil.

The other major point of frustration after his surgery was trying to get pain medicines. The oncology floor was full, so we were temporarily placed on the surgery floor, but all our orders were coming from oncology. I would ask for pain medicine, the nurse would page the doctor to get permission, and we would wait. I finally just walked down to oncology – 45 minutes is way too long to make a kid in pain wait just because of a communication break down. I am getting angry just thinking about it. I ran into one of the Child Life Specialists, who I adore beyond words, and she helped me track down someone who could get the orders up to the surgery floor. We got some more meds, but it has taken two days to get it up to the level he needs, and even now he still has waves of pain. I feel so worn down from watching my kid suffer so much. The process of getting pain medicines is so frustrating – Ollie cries, I call for the nurse, the nurse has to get permission if it is not in Ollie’s orders, the nurse has to wait for the medicine from pharmacy, and then finally it is administered, but we have to wait for it to kick in. This means every time Ollie has pain, we must endure about 30 minutes or more before he gets relief. This happens every couple of hours. I am most eager to go home so I can once again be in charge of giving the medicines.

Ollie insists on holding someone's hand all the time. When we need to reclaim our hands, we can slip him the remote to get a little time away.

Ollie insists on holding someone’s hand all the time. When we need to reclaim our hands, we can slip him the remote to get a little time away.

I am also astounded by the inefficient and ancient forms of communication that run the hospital. I’ve recently read a few articles about this, so it is fresh on my mind, but going through the surgical process reminded me how inefficient hospitals are. The morning of surgery, we had at least five conversations with five different people about the same exact thing – his medical history, his medications, any concerns, etc. This is also information I have completed on countless forms. It seems it would be so much better if there was one point person who gathered this information, and shared it with the interested parties. Or if there was an electronic form of his information, and each person visiting had a tablet with it, and could just ask for confirmation (all our visitors were scribbling on scrapes of paper). I really don’t think I can have yet another conversation about how Ollie is on both Oxycotin and Oxycodone, and have to explain the difference between these medications – it happens all the time. I listened to a radio story recently that made the claim that these inefficiencies are contributing factors to the outrageous costs of hospital care. Operating rooms go unused, and surgeries get delayed, costing money, and I can see how this happens when I have to explain to so many people the basics of Ollie’s situation. The anesthesiologist who made the IV mistake walked in minutes before surgery (actually she delayed it – our surgeon was pacing the hall right outside our door waiting), and did not even know that Ollie’s medical condition is neuroblastoma.

So after several days of communication frustrations, I am feeling totally worn out. And Ollie insists on holding someone’s hand all the time as a coping strategy for the pain, so this has been a very unproductive hospital stay – when I think of all the grading I will have to catch up on, I get overwhelmed. But mostly I want Ollie to feel better. Everything seems easier when he is feeling ok.

 

Tube troubles

Ugh, this damn feeding tube is really testing us. On my last post I shared that Ollie had thrown up two tubes in the past week (and a third one that was yanked out). Children’s of Alabama was great about squeezing us in on Monday to place a new tube – things went smoothly and the tube was in Ollie before 3 pm. It lasted until about 7 pm tonight - a little over 24 hours. Ollie continues to have nausea, and threw up this afternoon. The tube stayed in, but we were no longer able to push anything through it. I spent about 2 hours trying to unclog it with all the tricks the nurses taught me, but it stubbornly refused any liquid. Then Ollie threw up again and out the tube came. We once again partnered to pull it out of his nose. He was so frustrated that he started to yell, “Why do you keep doing this, body?!” The first time his tube came out, I was on my way from Birmingham to Atlanta, and arrived about five minutes after Ollie and his dad had pulled it out. I was so thankful I had missed the incident, but I suppose I’ve learned my lesson that I’ll always get a turn – or as in this case, three turns.

I was drained by the cumulative impact of the past several days, and I lost my patience when I begged him to take some pain meds via mouth. I just could not bear the thought of trying to get through the night with him in pain. I’m already having trouble finding time for a shower due to his constant need to make trips to the potty and my fear that he will vomit while I am showering. I really, really hope the nausea and tummy troubles are because of the chemo, and will soon go away. Of course we start chemo again in two weeks.

As I complained to a friend tonight, it is painfully disheartening when what should be simple tasks – taking medicines and gaining weight – become seemingly impossible. Unlike the cancer, these things are (mostly) within our control, but on days like today, they feel out of reach. It really is like whack-a-mole – as soon as we get one problem under control, something else pops up, detracting from whatever success has been achieved.

Ollie’s worst day

Enjoying a brief time of no tube.

Enjoying a brief time of no tube.

I’ve decided if my input is ever sought for designing a hospital, I am going to suggest a soundproof room that is exclusively available to people who need to scream – maybe with a punching bag or something else, too. I desperately needed this on Friday - a day Ollie refers to as “the worse day I’ve ever had” (of course, his memory is spotty, and while it was difficult, it barely cracks my top five). I spent so much of the day fighting tears of sadness and anguish, and I think if I could have just had a moment solely to myself to scream for as long as I needed, I would have been able to cope a little better. Instead I had to do my best to not cry in front of Ollie – he gets so worried when he sees me crying.

Things were set into motion on Thursday night when Ollie vomited with enough force to throw up his feeding tube. This is scary, and after some panic, he and Anthony managed to pull it the rest of the way out of his nose. One benefit is John Oliver was so astonished as his own bravery and ability to handle the situation that he repeatedly told us that he can handle anything after getting through that. So when we arrived at radiation the next morning, I told the nurse and anesthesiologist we needed a new tube, and they went about making the arrangements. I was thrilled we were getting it done early in the day, and they were going to do it while he was knocked out.

Unfortunately, what I did not know was that the wire used to insert the tube had to remain in place until an x-ray could be completed to ensure the tube was in its proper location. When Ollie was wheeled out of the radiation room, and woke up from the sedation, he started to cry. Apparently having a stiff wire up through your nose and down your throat is very uncomfortable, and he worked himself up, demanding that we remove it immediately and that he could not take it anymore. Even more unfortunately, since this was done at the Winship Cancer center – in a different building and separate from the pediatric oncology clinic – getting an x-ray was not an easy or quick process. We first went to clinic – it had just opened, and the solid tumor team was not there, but a nurse helped us by putting in orders for an x-ray. we then had to go back down to the front registration of CHOA, sign in, wait our turn to be called into a little room and give all our information – insurance, address, etc. – and then were sent to radiology. At this point, Ollie has spent over an hour with this wire sticking out of his nose, screaming and crying, and my nerves were frayed.

New tube (this one lasted less than three days), napping during chemo

New tube (this one lasted less than three days), napping during chemo

After some more waiting, we are finally taken back for an x-ray. They asked for him to stand – he can’t, so they arranged for him to lay down, and when we picked him up to place him on the table, the tube caught on his wheelchair, and was yanked out several inches. I’ve never heard him scream so loud. I panicked, asking for help to either push it back in or pull it out. The x-ray techs told me they are not allowed to mess with it, and insisted we do the x-rays so the doctor could see where the tube was now located. They did one of his abdomen, said we were done, I put him back in his wheelchair, and then they said they needed one of his chest, so back on the table he went. I asked for a doctor, and they said we would have to go back to the clinic, so I hauled butt, brushing off any offer to help – I knew I would be faster alone.

Back in clinic, he was still screaming, we did some more waiting, and were finally placed in an infusion room. At this point Ollie was clutching the tube for dear life right at his nostril, terrified to move. Thirty minutes and several visits from a nurse later, I was told we would go back down to radiology in an hour to have the tube fixed. I was incredulous – there was no way either Ollie or I were going to get through another hour. I asked again about just pulling the tube, and the nurse said sure and put on some gloves. He said it was in only about 10 cm anyway. This was the first time anyone gave me information from the x-rays dispite multiple requests. Ollie was scared and said he would rather wait an hour.  The nurse then offered to let him pull it out – which was strange since the x-ray techs insisted only a doctor was allowed to complete the job started in their room. Ollie bravely pulled, and once it was out, he started to cry, “These are happy tears! I’m so glad that is over!” A weight came off my chest, and I took what felt like my first breath in several hours.

A highlight of the weekend - playdate with Ollie's best buddy, Micah

A highlight of the weekend – playdate with Ollie’s best buddy, Micah

We waited the hour, and returned to radiology. The lab techs (different ones, thank god) spoke kindly to Ollie, and asked me to place him on the table. I asked if he could have something to help him stay calm – versed or Ativan. The answer to this took about 30 more minutes because no one knew if it was ok to give him something after his morning sedation. But I am so, so grateful to the doctor and lab techs who patiently and persistently made calls to get an answer for us. Thankfully it was yes, and we were moved again to a little room for a nurse to administer the versed. This took about 30 more minutes – vitals were taken, information recorded in the computer, etc. Finally we were back  in the radiology room, Ollie was on the table with a little medicinal courage, and the tube was correctly inserted. He was awake, and hated it, but it was nothing like the fit he had last time.

By then it was 2:30, and we still had chemo waiting for us up in clinic (so much for getting the tube taken care of early in the day). Everything went smoothly with the chemo, and Ollie even napped a little, and we left the hospital around 5 pm. It was wonderful to put radiation behind us, even if graduation day was marred by the tube fiasco, and chemo is finished for a couple more weeks. Two whole weeks with no treatment. I am both delighted and terrified. I desperately want his body to have an opportunity to recover from all it has been subjected to, but I get really anxious about cancer growth when nothing is being actively done to stop it. He lamented about his immobility today, and I am eager to do what we can to help him walk. It’s been so long that we now have to fight the pain, and build back his balance and muscle strength.

Last night was one of my most difficult moments. As he and I lay in bed, he asked me when the cancer would be completely gone and he could have his noodles taken out. I told him I didn’t know, and of course he was disappointed with this answer. This question broke me because it forced me to confront the truth – the cancer many never go away, and it demonstrated how difficult this uncertainly must be for such a little one. Almost one-eighth of his life has been lived in the shadow of cancer, and it must feel like forever to him, and he just wants to know when life will return to normal – when will he be able to go to school, play at the park, not have tubes hanging out of him, not spend more time with adults than other kids, not spend days and days sitting in waiting rooms, wondering what torture will next be inflicted. He’s asked about going swimming, and was crushed to not be on a Disney trip with his cousins this week. I hate that these childhood pleasures have been exchanged with misery, and I hate that I do not know when or if it will ever stop.

And to put a cap on this weekend, as we were driving back to Alabama today, he vomited about two miles from our house, once again throwing up the tube. I’m very lucky to have not driven in a ditch – fortunately when I slammed on my breaks, veering to the right, we were in a driveway. I ran around the car in the rain, and once again helped him pull the tube completely out of his nose. Having no tube presents a few challenges – it means no feeds, and lost opportunity to put on weight, and it means he must take all his meds by mouth. He has been vomiting a lot lately, so this is risky business. Despite all of this, we are so happy to both be back at our home in Alabama. It has been almost a month since Ollie was last home, and it makes the house feel so much warmer when he is here.

An Alexander Day

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Yesterday, after five hours in the ER, being spilled on by both me and the nurse, vomiting, and experiencing terrible pain during urination, Ollie looked at me, and said it was one of the worst days he has had in a long time. I reminded him about Alexander, the titular character from one of my favorite children’s books, Alexander and the Terrible, Horrible, No Good, Very Bad Day (and I love children’s literature, so this is tough competition). Alexander is a little boy who has such a terrible day that the only solution is to go to sleep, put it behind him, and try again the next day – a solution I often turn to. Of course, it was almost 6 am before Ollie and I were in bed, but it did help.

We spent the night in the ER at Egleston – my first time to the Atlanta ER; Ollie’s second (his father had the pleasure of the first trip). He had been complaining of painful urination off and on, and it escalated yesterday to the point that I felt we needed to rule out bladder infection. Thankfully it was determined that he does not have an infection – just bladder irritation (I use the word “just” knowing full well that bladder irritation, even sans infection, is excruciatingly uncomfortable). This is one expected side effect of radiation, so it is not a big surprise, but it adds a new medication to our already long list. So now he is on a couple of pain meds, neurotin to help with nerve pain, anti-nausea meds, an appetite simulate, and now something to help with his bladder pain. He is connected to feeds for 12 hours during the day, and TPN/lipids for 12 hours at night (this required an hour training for me – I’m wondering when I get my honorary nursing certificate). When he pees, the pain in his knee brings tears to his eyes within seconds, and now he has the bladder pain. I can’t imagine how much he must dread going potty.

Cousin love!

Cousin love!

Now I am back in Alabama, and John Oliver is still in Georgia. Tomorrow starts a big/difficult week for Ollie – he will report for radiation in the morning, and then go to the cancer outpatient clinic for chemotherapy, and repeat this grueling routine for four more days. I am very anxious about the toll this upcoming week will take on him. He is certainly more perky these days, but there are constant reminders of the torture his body has been through. He tires very easily, weighs next to nothing, vomits on a regular basis, does not eat, and cannot walk.  Our schedule reminds me a lot of his first few months as a baby - every couple of hours there is a need to attend to, my tasks are reminders of the fragility of his life, I try sleep during the down time, and I never feel rested.

Seeing his cousins eat encouraged Ollie to try a few bites of watermelon and ham.

Seeing his cousins eat encouraged Ollie to try a few bites of watermelon and ham.

Except now I have seven years of falling in love with him more and more each day, and I no longer take future time together for granted. Being away from him is difficult – on one hand, I am grateful for the break and more than a few hours of consecutive sleep. But I miss him so terribly. Being with him has a similar paradoxical effect – spending time with him is fun and intriguing – he is such an interesting little boy who makes me think and laugh. But being with him is also very painful – each wonderful moment has a shadow of sadness, reminders of how much I love him and how unbearable this ordeal is. And there are the days when he is in pain or completely shut down. I am so glad to be with him on those days – I like to comfort him, but it breaks my heart to see him like that, and it tears me up to think of how many  more days like that we will have.

 

 

 

 

 

Ollie's hair was falling out, covering his pillow and making him itchy, so we shaved his head again. This is the third time he has lost his hair.

Ollie’s hair was falling out, covering his pillow and making him itchy, so we shaved his head again. This is the third time he has lost his hair.

Spring break

Uncle Donnell's dock on the bayou

Uncle Donnell’s dock on the bayou, Spring break 2013

As someone who has spent most of my life as a student, and now has a job that includes spring break, I have come to expect the rejuvenation of these holidays in early spring with unreliable weather and irresistible urges to get out of town. It was during last year’s spring break that Ollie slipped and fell onto his hip, fracturing his bone which would eventually alert us to the symptoms of the cancer. I often think back to that blissfully ignorant time, jealous of our own normalcy. That week we stayed at my sweet Uncle Donnell’s house in Shalimar, the town I grew up in, and used its prime location on Poquito Bayou to play in the water, visit the beautiful beaches of the gulf coast, spend time with old friends, and eat delicious seafood. This year’s spring break does involve a trip out of town, but rather than hunting hermit crabs, our mornings are spent battling Atlanta traffic and getting radiation. It has been a very long year.

Chasing the waves, Okaloosa Island, spring break 2013

Chasing the waves, Okaloosa Island, spring break 2013

John Oliver has four radiation treatments behind him, and so far he is tolerating them quite well. On the first day they suggested that we attempt it without sedation. Needless to say, there were cries, screams, requests from the medical staff to encourage Ollie to be still, and a firm reminder from parents that we are in favor of sedation. We know sedation has risks, but we also know he generally tolerates it fine, and this is another example of how we can minimize discomfort and misery. Again, the radiation team sees this one hour of his day, and asks that he endure discomfort, but we see all 24 hours and each and every time we ask him to be brave or take a risk or just get through something. Radiation is difficult – he must lie on a hard surface, legs extended, placing pressure right on his tumor, and stay completely still for 20 minutes, and I mean completely still – a shift of an inch totally misplaces the radiation beam. I talked with a woman one day at the radiation center in Birmingham, and she shared that those 20 minutes feel like an eternity to her, so imagine what they must feel like to a seven year old child in pain. Today we had a new anesthesiologist who looked at Ollie’s chart, looked up at me and said, “He can’t do this without sedation?” Exasperated,  I tersely said, “No.” The doctor pressed the issue – “Why not?” Out of patience and annoyed (listen to the parents, please!!), I replied “Because he can’t. Trust me, sedation is best for all involved.” Which prompted a lecture about the risks of sedation. Thanks, guy – like my child hasn’t been sedated a million times. I just let him talk, turned back to Ollie, and the issue was closed.

Ollie in the Back Porch giftshop, where both his father and I worked in our younger days

Ollie in the Back Porch giftshop, where both his father and I worked in our younger days, spring break 2013

Ollie was discharged from the hospital on Tuesday, and while his daily activities are very similar (sleep, play video games, watch cartoons/youtube videos), it is much more relaxing to be at home – no hourly vitals, no parade of visitors asking him about his stuffed animals (adults are compelled to make small talk with children, and people coming to our room – physical therapists, nurses, child life specialists, nutritionists, doctors, etc., always asked Ollie about his Sonic and Pikachu, and he lost all patience by the fifth inquiry – “I don’t want to talk about it”), no constant beeping of the IV, no measuring urine.

We were especially glad to leave after a maddening morning on Tuesday. I am generally a big fan of our nurses, and I am in awe of all they manage and how well they attend to the details. The person I trust most to consult with is a nurse practitioner in Atlanta.  But every now and then we encounter a nurse who is, well, less than exemplary. The one we had on Tuesday was comically error-prone from the moment she entered our room. We had to do radiation in the morning, and by the time we were finished, and waiting for her to get everything ready to walk back to the room,  she kept getting in her own way of accomplishing seemingly easy tasks, and Ollie started to cry, “I want to go back to my room! What is taking so long?” Another nurse tried to comfort him by saying, “It’s ok. We’ll be back in the room soon.” Ollie responded, “I doubt it.” Now it makes me giggle the way he totally called her on these futile attempts to comfort in the midst of incompetence, but at the time I thought my head might explode. They also kept calling him John, which is an easy way to irritate him.

He actually asked for a semi-solid food - marshmallow!

He actually asked for a semi-solid food – marshmallow!

So after a two week hospital stay, some of the darkest days I’ve ever had, and the most miserable I’ve ever seen Ollie, we are so grateful to be back out in the world with relatively improved health. He still sleeps a lot and is on heavy pain meds, but perks up more and more each day. A few days ago he said, “Ollie’s back.” And today, as I watched him grill the radiation team about what they were doing, what they would do once he was asleep, and asking the reasoning behind every decision, it was an immense pleasure to see the kid back in action. In the past several days, the only time he has complained of pain is when he has to pee. He insists on standing despite the fact that his legs are his primary source of pain,  and when I suggested he sit down so as to take the pressure off of his legs, he told me that sitting also hurts, and that having a penis is a blessing and a curse. True, son.

Radiation, round two

3.23.14 004John Oliver starts his second round of radiation tomorrow. The plan is to radiate the tumor at Ollie’s tailbone and cancer that has spread down his right femur. Neuroblastoma is known for being radiation sensitive, and the chemo he is getting can intensify that sensitivity, so we hope this treatment will shrink the tumor, relieving pain and nerve symptoms. I am anxious and hopeful, like I always am on the eve of a new phase of treatment. Radiation is terrifying because of its likelihood to inflict irreparable harm to the body – the list of possible side effects includes long-term damage to the intestines, bladder, bones, and secondary cancers (this last one is particularly pertinent for childhood recipients of radiation). The up side is that the power of radiation is also one of our best weapons to kill cancers cells. I like that thought a lot, and honestly at this point, I care very little about long-term side effects. It is like by thinking of those possible long-term outcomes I must indulge in the idea of a long-term future for Ollie, and I am then reminded of how unlikely this is, and it hurts.  I feel my hopes rising, and then I think of the reality of what we are facing and the long shot of ever having to deal with long-term side effects, and I feel my heart break a little more. I’d give anything to one day problem solve how to adapt to mismatched leg length, or some GI issue.

Over the past few days, John Oliver has really perked up, and I realized how much I have missed him. Until recently, he was either in too much pain or too medicated to really interact or do much of anything. He would just lay in bed, showing no emotional response, taking no interest in his usual pleasures. He’d ask for quiet and for people to leave him alone, making even a kiss on the forehead a risky move capable of upsetting him. But on Thursday evening, he started to talk a little more. My brother was visiting us, and I was complaining about laundry, and Ollie chimed in to tell us that when Nana did some laundry for me a couple of weeks ago, he thanked her,  saying, “Mommy has a lot to do, so thank you for doing the laundry so she doesn’t have to.” Just hearing him share this story was touching – obviously, it is a sweet story, exemplary of his thoughtfulness, but it was one of the first signs of him coming out of the funk he has been in and joining our conversation.

By Friday, he was talking more, and even played some video games. This was a very encouraging sign because it has been weeks since he has wanted to play anything. And by Saturday, he was joking and laughing, cracking himself up by typing the word “poop” on a game on Papa’s phone. He and I played hangman, and it was so, so great feel him coming back to us. He was even argumentative, which made me happy, which frustrated him even more. Now if I could get some cuddle time, I would be deliriously happy (with all his boo boos from the IVs, the needle pokes to draw blood, removing his old central line, putting in a new one, a biopsy, and just his general pain, he has not been comfortable letting people near him).

Breaking in the new wheels - we got a little wheelchair and Ollie humored me for a 10 minute outing.

Breaking in the new wheels – we got a little wheelchair and Ollie humored me for a 10 minute outing.

We also got a piece of good news on Saturday. Earlier in the week, his scans showed signs of pneumatosis, which is the presence of gas bubbles in the intestine wall. This can develop into a fatal problem if it progresses, causing perforation of the intestines. It is treated by administering antibiotics, which Ollie has been receiving, and by withholding feeds, which we obviously did not want to do since he is so underweight.  The surgeon who placed his new central line was the first one to tell us about the pneumatosis, and he feared it was because of an infection. However, the oncologists told us that this is common in children who receive chemotherapy, and because Ollie had no other troubling symptoms, they believed it to be this more benign form, which generally resolves on its own.

I trusted our oncologists on this and therefore put up a bit of a fight on Saturday morning when we were told surgery had ordered an x-ray to monitor the pneumatosis. X-rays are quite painful for him because he has to lie on his back and straighten his legs, and he had just had one on Thursday. I said no to the nurse, the oncology fellow she then sent in, but by the time a second oncologist came to our room to request the x-ray, I agreed. It was an example of how doctors will say something like, “Yes, I know this might be unpleasant, but we will be quick and the information will be helpful.” Except that the doctors see only the one unpleasant thing they are asking of Ollie, and when he has to do several unpleasant things every day, it adds up to misery and anxiety about what he will have to endure next time. A short x-ray may seem like a minor request, but it is just one in a series of requests that disrupt quality of life for Ollie, and this is an instance where I feel like a commonsensical cost/benefit analysis was disregarded – he had no symptoms except for some bubbles on the his CT scan on Tuesday, which showed improvement when he was subjected to an x-ray on Thursday, and it fit within the clinical expectation of children who received chemo, so why the need for another x-ray on Saturday? It was awful, just like I thought it would be, complete with tears, screams, and pain (made worse by a misbehaving x-ray machine that extended the time he had to be uncomfortable), but I do feel a little relief knowing that the symptoms have been resolved, and it is one more thing we can put behind us.

On a very happy note, we were blown away by the “Rally for Ollie” event that Montevallo Elementary School held last week. It was the culmination of a trend started by my sweet friends from Birmingham-Southern, snapping pictures of family members wearing rally caps for Ollie and sharing them on Facebook. The elementary school took the concept beyond our wildest expectations, inviting all the children to wear a hat in Ollie’s honor at school, and gathering them in a stadium to cheer him on. I asked Ollie if he knows what it feels like to have hundreds of people chanting his name, and he said no, so I showed him the video. He was mesmerized, in awe that so many children were cheering for him. And we are so very grateful for all the love.