One year

My darling boy almost a year ago before we knew cancer was about to take up residence in our lives.

My darling boy almost a year ago before we knew cancer was about to take up residence in our lives.

It is one year ago today that Ollie and I first became acquainted with Children’s of Alabama. After a month or so of pain in his legs and persistent fevers, we arrived at the ER for what we thought was an infection in his hip. Oh, if only. I remember being upset when they told us we would have to stay the night so they could do an MRI the following day. That was the first of over 130 nights within the last year at Children’s of Alabama and Children’s Healthcare of Atlanta. The glass half-full perspective is that he has lived for a year with this disease, which is an amazing feat – the odds of this were not in our favor. But of course the year has not gone how we would have liked. He would be finishing up the frontline treatment protocol around now if he had responded the way we desperately wanted. Instead, we are scrambling to find something to keep the cancer at bay until a miraculous breakthrough in treating neuroblastoma is discovered. I thought maybe I would have some grand insight or wisdom to share on this anniversary, but I mostly feel exhausted and beaten down by this year and I still hope to wake up from this nightmare. I am in awe of what my kid has endured, and angry that he has had to go through it all. He is the strongest person I know. I have no idea how he puts up with all that we ask of him, and even manages to laugh and joke around sometimes (also scream and cry, but what seven-year-old doesn’t?). He is inquisitive, routinely raising his hand and saying, “excuse me?” to doctors and nurses to ask questions, and hears every thing that is said, leading to more questions.  He knows the names of all of his medications and what their intended purpose is, and he assertively tells us all how he wants things, what he is willing to do, how he wants to do it, and what he wants in exchange for taking a risk. I know we are not easy patients, but I love seeing him demand a role in his own care. He inspires me – I have learned more about assertiveness this past year than I ever thought possible.

John Oliver started chemo again yesterday. There were of course communication break-downs. The chemo meds had not been ordered despite conversations last week confirming we would be receiving the medicines in clinic starting on Monday. The hospital only had the name brand form of the drug, and needless to say the cost was a bit shocking. However, the pharmacy was very gracious, and spent a few hours working on getting the meds for us, and Ollie was able to start chemo around 4 pm. He had been at the hospital since 7:30 am for his CT scan, so this was less than ideal, and his patience was tested (not to mention his father’s). It is frustrating to know once again we were at the mercy of a communication error, or as the pharmacist said, “someone dropping the ball.”

He clutches this cross to relieve pain. It may be the most important item in our house right now. I am just glad he has an alternative to my hand.

He clutches this cross to relieve pain. It may be the most important item in our house right now. I am just glad he has an alternative to my hand.

We received the best news we have gotten in quite a while – a CT scan shows no new growth on his skull; just the spot that we already knew was there. Towards the end of our Seattle trip, he was complaining of pain in his eye, and I felt certain a tumor was growing there. So, so relieved that is not the case. He is still having back pain, but we know there is a lot of cancer there, so that is not unexpected. We hope this current round of chemo slows whatever growth is taking place, and we may get on a clinical trial in the near future. The G-tube is still bothersome, but it seems to be getting better. He does not cry every time I attach or remove it, and that is a huge improvement. He weighed about 36 lbs today, and that is also wonderful progress. He is still not eating, but as long we get some weight on him and nutrition through his tube and TPN, we hope he will be strong enough to endure whatever treatment is next. He has been vomiting on a regular basis, at least once a day, and he hates it, crying and saying how much he hates throwing up. I try to stay calm, rub his back, help hold the bucket, and hand over tissues when he is ready to wipe his mouth. The pediasure feeds are one of the worst smelling foods in vomit form, so I’ve learned to breath through my mouth and keep my own gagging to a minimum. His body is very achy, and he is asking for pain meds fairly often, and they do seem to work wonders. We are very much taking it day by day, and I know this disease well enough to know that it the best we can do. It is sneaky and fast, and we must be vigilant about doing everything within our control to give his body the best possible chance of fighting.


thank you Make-a-Wish!

thank you Make-a-Wish!

We are about halfway through John Oliver’s Make-A-Wish trip, and it is even better than I had hoped for. We spent most of yesterday at the Nintendo Headquarters in Seattle, and it was a dream come true for Ollie. We were given a tour, hosted by the most fantastic group of employees who played video games with Ollie, and left with tons of swag. Ollie had a hard moment, and one of the employees who works on Pokémon rushed up to his office to get some cool Picachu toys. He spoke to Ollie with so much tenderness that I was flooded with appreciation for his compassion and patience and wanted to stop everything and tell him how much it meant to this exhausted mom. Most of the adults in Ollie’s life, including me, are constantly asking him to do things he hates, or doing something to him that causes pain.

Video games and the worlds they provide access to have become central to Ollie’s well-being. Among the many, many things cancer has taken, physical play and time with other kids have been ruthless. As the disease has invaded his body, atrophying his bones and muscles, leaving him with nerve damage and a drop foot, wiping him of energy (this is a kid who almost never needed a daytime nap, and now he spends more time sleeping than awake), Ollie’s choices of how and what to play have been limited. He can’t walk, so playgrounds are no longer an option; his tailbone is a primary source of pain, so sitting on the floor with his toys is mostly gone; he is so cautious of his noodles and g-tube that he feels most comfortable in a protected position in bed or on a couch. So we have turned to video games, and while I was skeptical at first, I now see how magical they can be. Ollie becomes engrossed in the various missions, problem solves, identifies with and loves the characters, and is distracted from his own limitations. His creativity and imagination are engaged and he feels proud when he achieves a victory. And they are a lot of fun for him. He has been able to play with other kids and his cousins via online games, giving him a little more social interaction. He is even able to convince me to play sometimes.

A warm welcome from Nintendo!

A warm welcome from Nintendo!

Games also expose his “areas of growth,” as we social workers like to call shortcomings. He has very little patience, and gets terribly frustrated when things are difficult; he hates to lose; and he often gives up in a fit of anger. This are hard moments for me, but also times for us to talk about things like perseverance and practice. I figure it is good for him to learn these lessons though a medium that he loves. But we still have a long way to go. He had a breakdown at Nintendo, becoming frustrated with a game he was playing, crying, and asking to go home. I simultaneously wanted to make him feel better, and ensure our hosts that they had exceeded our expectations and this behavior was entirely about Ollie’s own issues. He gets overwhelmed with a lot of stimulation (which I can relate to), and I think the attention, his own exhaustion and discomfort, and his natural impatience caught up to him. It’s been such a long week, with so much pain and anxiety due to the G-tube, and he has started to have new pains. We spent close to 10 hours traveling the previous day, pushing his body to its limit, and he started the morning by vomiting into the ice bucket in the hotel. We’ve also received some bad news (I’ll get to that in a moment), so I am sure my own anxiety and sorrow are seen and felt by such a perceptive little boy. I wondered if this was too much for him (of course, when the trip was planned, we had no idea he would have surgery less than a week before traveling to Seattle), and after returning to the hotel, I asked him how the trip has been. He said, “It’s been really great.” And I asked if he was glad we had come, and he said, “Really glad.” This is actually high praise – the kid is brutally honest (so, so brutally honest), so I have no doubt that he has had an amazing time. Make-A-Wish experiences are bittersweet – if a kid is having one, it means something has gone terribly wrong, and I have my own internal struggles about acknowledging why we are here receiving this once-in-a-lifetime opportunity. But we are so, so grateful to Make-A-Wish and Nintendo for taking great care of us, and finding something that is perfect for Ollie. He feels so special.

On the plane. Ollie discovered that when he squeezes something, it helps with the pain. First it was my hand, but I needed it every so often; then it was the hospital remote, but it had to stay at the hospital. I remembered a hand-carved cross that was given to us, designed to fit in a hand. it is now one of his most important possessions, and goes everywhere. He panic when he can't immediately find it.

Waiting on the plane. Ollie discovered that when he squeezes something, it helps with the pain. First it was my hand, but I needed it every so often; then it was the hospital remote, but it had to stay at the hospital. I remembered a hand-carved cross that was given to us, designed to fit in a hand. it is now one of his most important possessions, and goes everywhere. He panic when he can’t immediately find it.

The dark cloud hanging over my head – darker than usual – started as we boarded our first flight from Birmingham to Atlanta. Ollie mentioned that his head hurts when he touches it, and as I examined it, I could see growth in the area that lit up on his last CT scan. Once I started to look closely, it seemed to bulge and I wondered how I had missed it. I felt the familiar clamp on my heart and knot in my stomach. I am prone to motion sickness anyway – a challenge for someone who loves to travel as much as I do – so I had to fight the urge to not throw up during most of the flight. Once in Atlanta, I called our doctor, and she said if it hurts only when touched, it likely does not require immediate attention. She gave me all the information about the neuroblastoma expert in Seattle, assured me we would be in good hands if we did need medical assistance, and made plans to examine his head first thing next week.

This likely means the cancer is growing, which means our current treatment is ineffective. I spent much of the day wishing to get the news that Ollie has an ALK mutation. This is a genetic form of neuroblastoma that is very rare, so unlikely, but there are additional treatments that have recently been shown to be quite good for this strand of the disease. It would give us more options. But unlike Ollie, my wish did not come true. I received a text message from our doctor that Ollie does not have the ALK mutation, and it felt like my last hope was crushed. The message came through just as we were getting into the limo to drive to Nintendo, and all I wanted to do was be alone and cry. Thankfully we had a 30 minute ride for me to rally, and the atmosphere at Nintendo provided a solid distraction. But I felt like I was engulfed in a thick fog, making it hard for me to think or breath or have a coherent conversation. The dark thoughts were strong. And today Ollie said his ribs and back hurt. Other spot that lit up on the scan.

The emotional heaviness of what we are confronted with, the arduous task of caring for a sick person, and the torture of seeing my son suffer on a regular basis are unbearable. Why can’t we just get a break? Why can’t the news be good? Why is my sweet boy inflicted with so much pain so often? Last night Ollie asked me if there is a chance the cancer can kill him, or if we had done enough to stop it. I lied and said I think we have done enough. I hate lying to him, and I am pretty bad at it, but I cannot be honest about this. I wish he could get a chance at good health.


First limo ride. he loved it!

First limo ride. he loved it!

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



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


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.