Disney and Boxtrolls

7.21.2014 047This afternoon Ollie told the hospice nurse how special he is because of all the VIP treatment he has received over the past week. I love moments like this – hearing him talk so fondly of himself, in awe that he is so special. I love this so much I almost don’t have room for the sadness in my heart. Thank you so so much for all the support that made his experience possible – it took a lot of work and generosity on behalf of so many people, and we are full of gratitude.

Waiting for the Buzz Lightyear ride.

Waiting for the Buzz Lightyear ride.

The timing of the trip seems just about perfect – our radiation oncologist zapped Ollie’s left hip, his “hurty leg” as he calls it, with a heavy dose of radiation the Thursday before we left, and it alleviated much of the pain associated with moving. On the ride home, he started to complain about pain in his right knee, so it seems the days in Orlando were our best window for minimal pain. We rode in an RV, which Ollie loved so much he counts as one of his very favorite things about the trip. In fact, it may have been his favorite thing. How do we begin to thank Papa Tetloff for driving that beast for so many hours? I can’t imagine how exhausting that is!

Cousins!

Cousins!

Ollie and I both rested a lot on the drive down, so we were ready for Disney the next day. My sister-in-law had the brilliant idea of booking the VIP package. This is a service provided by Disney that is worth every extra penny, especially for our specific situation. We met two tour guides at the beginning of the day who handled every little detail, from finding the nearest ice cream stand to informing the ride attendants that we needed the wheelchair accessible car (Disney has several rides with one car that has a removable back so we could just wheel Ollie on). hey would even navigate the crowd, ensuring no one bumped into Ollie. We never waited in any line – it was like a turbo fast pass. Even when meeting characters, we would be moved to the front of the line as soon as we arrived. I imagine we had a few angry scowls thrown our way when our group of 18 walked right into a ride and boarded it in front of so many waiting folks. It expedited the entire process, which was necessary since Ollie only had a few hours of energy before he needed to return to the hotel for rest.

On the Buzz ride.

On the Buzz ride.

Buzz tells Ollie the two of them are cool, but Woody is stinky and gets one of the best smiles from the boy.

Buzz tells Ollie the two of them are cool, but Woody is stinky and gets one of the best smiles from the boy.

The guides were incredibly knowledgeable and friendly – they drove us from park to park in a van, escorting us through back entrances located close to the rides we wanted to go on first. But the most special treatment came when we were at MGM with our guide Patrick. This was our last day at the parks, and we had not found Pluto yet. Patrick worked a little magic, and within 30 minutes we were waiting outside the door to the characters’ dressing area. They were preparing to go on stage for a show, and he requested they come out a few minutes early to meet Ollie. First came Donald, Daisy, Chip, and Dale (and I love that Donald signs his autograph “Donald Duck #1″). Then came Pluto and Ollie just lit up. He kept telling Pluto how much he loved him and what a big fan he is. They spent several minutes together, and were joined by Mickey, Minnie, and Goofy. No line, all the characters at one time, just for us. Very special. Ollie also seems to have good luck with weather. We started to joke that whenever he was out, the rain would stop, but when this proved to be true over and over, I became convinced he was better than an umbrella at keeping us dry.

Cat nap after ice cream

Cat nap after ice cream

When we asked Ollie about his favorite moments of the trip, he would say he loved it all, but especially the food (we did a tour of ice cream shops and hot dog stands), meeting the characters, and the gift shops. I loved that we shared it with so many family members, that I saw him smile more than in recent memory, and it was the trip Ollie wanted – we did what he wanted, and everyone, even the other kids, was accommodating. For the most part, Ollie felt good the whole time. We have a special gel pillow given by friends who are also a cancer family, and it helps Ollie to sit in a comfortable position for long periods of time. And of course we had lots of “feel good” medicines on us at all times. He would get sleepy and take short naps in his wheelchair, but was alert much of the time.

 

 

 

 

 

Sweet Pluto!

Sweet Pluto!

 

7.17.2014 083

7.17.2014 070

 

Boxtrolls!!

Boxtrolls!!

We had one final surprise waiting for us once we returned home.  A while back, Ollie told me about a movie he wanted to see. He had seen a trailer while watching youtube, and asked me if I wanted to go see Boxtrolls. I had not heard of the movie and asked Ollie, “What are boxtrolls?” He answered, “Trolls who wear boxes.” Of course. We watched the trailer together, and were both excited about the film which comes out in late September. I wondered out loud to Anthony one day if the studio would send us a copy, and Ollie asked why we don’t just wait to see it in the theater. It was like a knife to my heart because it was just another reminder of how precious our time is and that we can take nothing for granted. Anthony’s cousin, Ricky, found out that Ollie is excited about The Boxtrolls and got to work making calls and found the right people to pull some strings. Laika and Focus Features, the movie studios who created The Boxtrolls, contacted us to arrange for a private showing of the film for Ollie. They flew a security guard with a copy of the film from LA to Birmingham who stayed around for a day so we could watch the movie. When we told Ollie he was probably the first kid to see the movie, other than people who worked on it, he again commented on how special he is. This was such a wonderful treat – the movie is adorable and sweet, and everyone reading this should go see it on September 26 (for those of you who are Game of Thrones fans, the lead character is voiced by Isaac Hempstead-Wright, aka Bran Stark). They also mailed an enormous gift basket with Boxtrolsl, Paranorman, and Coraline swag. If you need more convincing about how wonderful the movie is, and especially the people who created it and shared it with us, watch this:

https://www.youtube.com/watch?v=Uc-6j6skJ-E

One of Ollie's favorite foods - watermelon

One of Ollie’s favorite foods – watermelon

The other night when I was cleaning up an accident (Ollie has lost control of his bowels), he asked me if I ever wished I was the one with cancer and he was taking care of me. I told him I wished that every day, and how sorry I am for all the pain cancer has caused him. His reply was that some days cancer gets the better of him, but there are still lots of time when life feels normal. It is my goal to maximize the normalcy of life during this time. But cancer makes if very difficult. The hard truth is that even with the support of hospice, and all the medicines at our fingertips in generous doses, John Oliver will continue to suffer from this cancer in a million little and big ways. It is so unfair that we are not only losing him, but it is happening in a manner that distracts from the quality of the time we have. Currently he sleeps a lot, but also has periods of time when he feels well enough to eat, talk, and play. In fact, he can be quite talkative, especially in the middle of the night. He always tells me about his dreams, and they are often exactly what you would expect from an imaginative seven-year-old, and sometimes they are what you would expect from a person traumatized by cancer. These moments are so precious, and I wish I could freeze time and preserve that experience of just being with him.

I  feel an enormous amount of stress and anxiety. Caring for Ollie at this stage is a 24 hour job with little time for rest, and even when we find rest, it is plagued by worry and fear. I am afraid of the course this disease will run – as his body succumbs, what new challenges and pain lie ahead? I am afraid of prolonged agony that we cannot control with medicines. Mostly I am afraid of living in this world without him. It is an impossible concept to imagine.

 

Waiting for radiation

Waiting for radiation

Post-radiation sedation

Post-radiation sedation

Ollie’s primary source of pain, and it is a big one, is his left hip joint. Anytime he moves at all – changing a pull-up, getting into his wheelchair, being carried to the car, adjusting on the bed – he feels a lot of pain. The good news is it is only when he moves, so there are times when he is able to experience relief and actually feel pretty good, but unfortunately, we have needed to move him a lot in order to get his radiation treatment. Each morning the dread grows as we get closer to the time to leave. I try to make the  move to the car as smooth as possible, even doping him up on morphine, but it always hurts. He cries from the moment I pick him up until I place him in his car seat. Once in the car, it takes some work to get him comfortable and adjust his legs to a position he likes – he still can’t move them, so when I am driving, he is stuck in whatever position he is in. He usually dozes a bit until we hit that first bump, and he cries every time we go over any bumps, which are countless on these terrible patched up roads for the 45 minutes drive to Children’s. I see a bump coming,  I look in the rear view mirror, and I see him wince and cry. It is an excruciating drive. Then he has to be moved from the car to the wheelchair. The anesthesia team have been wonderful and sedate him while in his chair so the next couple of moves occur while he is in a deep sleep. He loves the magic milk that knocks him out, and I sometimes wish I had a little on hand for the drive. Once he is finished with radiation and back in the car, he usually wakes up enough to cry on the drive home, and we once again have to make the transfer from the car to the bed. I feel like I’ve been hit by a truck by the time we are home, usually around 10 am.

7.14.2014 017Thankfully Thursday was our last day of radiation. We also had to stop by clinic to get his counts checked. We sat in the waiting room for an hour before one of the wonderful nurse practitioners took pity and finally got us to triage for vitals and to a room for labs. More waiting to get the results, and he needed platelets, so more waiting for the blood bank to send them over. Waiting while he got the transfusion, and just when I thought we were finally free to go home, Ollie got a fever. More labs were drawn, and we had to wait for pharmacy to send over an antibiotic, and wait through that transfusion. All this worked out to an 8 hour hospital visit. It was torture because Ollie was so uncomfortable the whole time, and I kept thinking, this is not how I want to spend the limited time we have left. He has been running high fevers since Thursday causing a lot of achiness and heat. After consulting with hospice and our oncologist, it was decided the fevers may be a response to discontinuing one of the medications, a steroid, so we have started it back and are optimistic it will abate the fevers. I certainly hope so – he is pitiful when his temperature gets over 102.

7.14.2014 025But in the midst of our worst nightmare, we have so much for which to be grateful. It truly makes these difficult days a little more bearable. The meals, lawn care, help with our Disney trip, the Glow Parade! All of it takes away a little worry and allows me more time to focus on Ollie. I believe in the power and necessity of community. Our lives are enhanced when we are connected to other people, and I have never felt that more than these past couple of weeks.

And tomorrow we leave for Disney! I have been holding my breath all week, just waiting for something to intervene, and those pesky fevers had me very worried, but it looks like we will make the trip. So many people have donated money, resources, and Disney connections, and we want you to know we could not have done this without that help. I know the trip will be bittersweet, but it is a special experience for those of us who want to give Ollie a bit of childhood joy. We are driving down in an RV so he can comfortably make the long trip and have a pretty spectacular trip planned.

 

 

Here’s a story about the tremendous love we were given by Montevallo: http://www.abc3340.com/story/25971378/hundreds-reach-out-to-child-battling-cancer

 

 

 

Getting ready for the glow parade

Getting ready for the glow parade

7.14.2014 042

Waiting for the glow parade

Waiting for the glow parade

Home

Resting at home

Resting at home

We are back home, and while I greatly miss the nurses and their assistance, it feels good to have Ollie back in his own space. Hospice has been out a couple of times, and they are wonderful. It’s one of those things that you hope you never need, but are so glad to have when the time comes. They are working with us to keep Ollie home as much as possible – no more clinic visits, no more ER visits, no more 8th floor. We have one phone number we call for anything, anytime – I like this simplicity after so many months of coordinating between two hospitals, and multiple departments and people within those institutions. Hospice will manage our medicines and supplies, communicate with the doctors as needed, answer any  questions, and come out anytime we want an in-person assessment or assistance. We can return to the hospital if we choose to, but traveling with Ollie is difficult – the bumpy roads of Alabama are miserable on someone in pain – so I anticipate we will avoid hospital trips unless absolutely necessary once we are finished with radiation.

The conversation with hospice intake was friendly, spiked with pangs of excruciating pain. We had to decide what measures we want to be taken if Ollie’s body begins to fail. We opted for do not resuscitate. We know his body is being ravaged by cancer, and it makes little sense to sustain him with machines, possibly prolonging his pain, with no chance of recovery. We did ask for transfusions, antibiotics to treat infections, and any other treatments that could maintain quality of life. We were also asked what funeral home we want to use. I was unable to answer this question, and I cannot think about it right now, so that was tabled. A funeral home for my seven-year-old? How did we get to this place?

John Oliver is still struggling with nausea and pain. Early on our first morning home, he and I were sleeping, and I heard the familiar gag of vomiting. I looked over at Ollie, and his eyes were open and kind of dazed, and he had vomit coming out of his mouth and on his  chest. I panicked, making sure he was ok, and then grabbed the bucket until he was finished. My immediate fear was that he had a seizure – we’ve been told these will become more likely as the tumor presses on his brain. However, he sweetly told me about a dream he was having, playing with his Playmobil toys and having a lot of fun, until he felt nauseous, and ran over to the bucket to throw up, which he also did in real life. Other than the nausea, his primary discomfort is pain in his eye. This could be from radiation, but more likely it’s the tumor putting more pressure on the optic nerve. He has completely lost mobility in his legs, and this greatly aggravates him. He hates not being able to move his legs and has to request assistance to sit up or move around.

Ollie keeps his aching eye covered most of the time

Ollie keeps his aching eye covered most of the time

I cry a lot when I am alone, but have managed to keep it together when I am with Ollie. He requires so much hands-on care that I am kept busy most hours of the day and night, which I suppose is helpful – I get to focus on caring for him, thinking of which medicine he needs next rather than the reality of what we are facing. It is exhausting – between the pain meds, anti-nausea meds, steroids to help with inflammation, zantac to help with the steroid side effects, nutrition, and a handful of “as needed” medicines, such as Ativan and morphine, Ollie receives something  every couple of hours. Unfortunately, all these medicines make him sleepy, but I’d rather that than whimpering in pain or hunched over an emesis basin.  Recently when Ollie had his g-tube switched for a larger one, he was calm during the actual process, but started to cry and scream immediately when finished. I asked him if he was in pain, and he said no. He was crying because he held in the worry and cry so as to not disrupt the nurse’s ability to carefully place the new tube, but once it was finished, he needed to release those feelings. That’s how I feel most of the time – staying focused on the tasks at hand, suppressing the more debilitating emotions, but having that release when and where I can – the shower, in my car while running errands, when Ollie is thoroughly knocked out by the medicines.

Right now our biggest hope is that the radiation treatments will diminish the tumors on his skull and spine, alleviating some of the more egregious symptoms. We are tentatively planning a trip to Disney World if we can get Ollie feeling a little better. He missed a family trip in the spring due to his treatment schedule, and we promised he could go this summer. He still asks for it – he mostly wants to see Pluto and go on the Buzz Lightyear ride – so we are trying to make it happen. Thank you so much to the friends and family working on this for us!

And a huge thank you to my colleagues and friends who quickly modified the summer course I am supposed to teach beginning on July 1. It is one of my favorite classes, and I am disappointed to miss it this year, but I cannot describe the comfort and relief to let it go without a worry, and that is only because I have the best colleagues in the world.

MRI

mri 4Ollie’s MRI confirmed our fears. The cancer has grown extensively, and most concerning it is threatening his brain, lungs, and heart. The tumor on his skull is pressing on his brain and optic nerve, which explains the loss of vision. His spine is riddled with disease, and tumors are growing inward, pressing on his spinal cord, causing the leg pain and mobility limitations. It is also right behind his heart, and we were told he could have heart failure as it grows, pressing inward. The cancer in his lungs has also grown, and there is now fluid build up. We will start radiation tomorrow to target the most egregious spots in order to alleviate some of the pain and neurological symptoms.  We also have an appointment with hospice tomorrow to discuss providing Ollie with care and comfort at home. The doctors estimate he has a few weeks to two months.

Needless to say, this is traumatizing for us. It still does not seem real to me, especially as I sit here and talk with my sweet boy. I know so many people have asked what they can do to help us, and honestly I have no idea. Nothing eases the pain. Sometimes we want company, sometimes we want to be alone. I will let Ollie direct how he wants to be, and I will do my best to communicate this. Please know we are so very grateful for your kind messages and it helps to know how much we are loved. I have no idea what to expect over these next few weeks and whether I will feel like writing. My emotions are too raw right now and I am exhausted by the burden of this grief, but we will do our best to provide updates as conditions change.

Admission

We are back in the hospital. John Oliver’s symptoms are multiplying and worsening. He can’t move one of his legs, and the other seems to be close to follow. He finds this extremely frustrating and spent much of the night crying about it. The eye that lost vision is now also painful. Last night he had trouble urinating and controlling his bowels. Our oncologist originally scheduled an MRI for Thursday, but a visit to the ophthalmologist ER last night prompted a much more urgent time-frame from the neuro-ophthalmologist. That doctor wanted to admit him last night, but after back and forth between ophthalmology and oncology, it was decided to let him go home. This was more than 12 hours after the time we arrived at clinic in the morning, so a very long day for Ollie.

We called the clinic this morning to find out if/when to come in for the MRI, and after several hours were told to go to the ER. The ER docs were not happy about this – they felt it was not the most efficient method of getting an MRI, especially since Ollie will need to be sedated and scheduling an MRI in coordination with anesthesia requires advanced notice. We were given the choice of going home and waiting for our originally scheduled MRI on Thursday, or being admitted with the possibility that in-patient status could help get an earlier scan. I opted for admission. I was very anxious at the thought of being alone with Ollie tonight with the possibility of troubling symptoms, such as seizures or  intense pain. I also wanted to gamble for an earlier MRI, and it seems we may get one tomorrow morning – the anesthesiologist stopped by the ER room to let us ask any questions and told us Ollie is on the schedule for tomorrow, but an oncologist came by after we were moved to our room and said he was unsure of they were able to squeeze us in. I tried to get clarification of what constitutes an emergency and therefore gets an immediate MRI, but it appears to be very subjective.

Regardless, there is compelling evidence that Ollie has tumors pressing on his brain and/or spine. The options for this are very limited, especially with his weak bone marrow, and our oncologist sees Ollie as a lost cause so I am anticipating that we will have the worst conversation of my life this week. The pain is overwhelming and feels beyond my capacity to manage. I’m sitting here, listening to him breath, watching him sleep, and I want to preserve this forever.

Clinic nap

Clinic nap

This week a national, coordinated effort is underway to advocate for federal funding for childhood cancer research. American Childhood Cancer Organization and others are asking those of us who care about this issue to make our voices heard by speaking with our congressional representatives in person or via social media. You can find a list of possible actions here: http://accoblog.org/step-up/ I implore you to engage with this effort.

This week in our  home, we’ve been watching our little boy slip away more and more. He has a very discernible bump on his head, and has completely lost vision in his right eye.  He is frustrated because he easily loses his train of thought. Pain continues to come on sudden and sharp, and we are giving him more pain medicine than ever before. The fevers continue, and his most common complaint these days is feeling achy, mostly in his back, legs, and arms. One significant improvement is his nausea. On Thursday our doctor prescribed IV anti-nausea meds that can be giving through Ollie’s noodles so we can get out of the cycle of giving medicines, vomit, nausea and pain because he can’t keep the medicines down. This change has been wonderful – nausea is one of the worst tribulations of this whole experience. It keeps him miserable so much of the time, usually resulting in vomit and pain. But since having the IV medications, Ollie has felt only a little nauseous and he has not thrown up in three days (nevermind – as I was writing this, Ollie threw up). All the medicines make him sleepy, but as long as he is comfortable, I feel a little sense of relief. It is excruciating to see him suffer.

We see our oncologist tomorrow, and I am terrified. I dread these appointments – they are nothing but bad news. Last Thursday I felt so anxious, and I couldn’t even think why – there were no test results, no new information to review, so very little to cause concern. But when Dr. Edrees said, “Right now, we are focused on controlling the pain, and we may not be able to completely stop the pain,” I felt my heart sink. That was it – that was what I was scared to hear – that even with all of the palliative options available, Ollie may still have pain.   We found out on Friday that Sloan-Kettering will not take Ollie’s case – they said they have nothing to offer him. Sloan was always in the back of my mind as the final option, when nothing local or semi-local was available. If Sloan sees no hope, it is hard to think we will find it anyway.

Not only am I afraid of losing Ollie, but I feel sick to my stomach when I think about what that process may be for us. Something is growing in his head right now, near his sweet, kind, bright brain. His intelligence and inquisitive nature are such an important part of his identity. How do I get through this, and how do I support him through it?

Field Notes from the ER

Napping in the ER bed

Napping in the ER bed

We are currently in the ER, waiting for lab results. John Oliver has experienced a variety of concerning symptoms recently, and I’ve postponed an ER visit as long as possible, but today blood in his vomit prompted me to make the call, pack up blankets and medicines, and make the trek to Children’s. He often feels nauseous these days, usually throwing up once or twice a day. But this morning he was miserable, crying out, “bucket!” and then propping himself up on one elbow, clinging to the emesis basin until his arm hurt from sitting in that position. My job is to rub his back – not scratch, not rub his neck or head, but just do circular motions on his back. When  it hurt to maintain this position, he would lie back down, whimpering and grimacing until the nausea hit again. After a few hours of this (and one dose of zofran I managed to sneak in while he was sleeping), he finally vomited, and what I saw frightened me – dark brown goop intermixed with bright red; very different from the usual white of his vomit due to the color of his feeds. Ollie does not eat, so it could not be food, and he had not had any medicine other than the clear zofran for several hours.

Getting a stem cell rescue

Getting a stem cell rescue

In addition to the blood in his vomit, he has been running low-grade fevers for a few days – a very ominous sign of either an infection or disease growth. Plus he just feels hot and achy when these fevers persist. He also has pain in his back, and now has tingling pain in his arms and legs, which could be nerve pain rather than cancer/bone pain. The spot on the back of his head is again sensitive to touch. And this morning he told me one eye is blurry (this eye close to a spot on his skull), and sometimes it hurts when he breathes and yawns. Each of these symptoms could have an innocuous cause, but of course I am very concerned that the sum total indicates cancer progression. As far as quality of life, which is my primary concern right now, he is most bothered by the nausea and occasional pain. The best way to treat all of these are a spectrum of medications – methodone for bone pain, neurotin for nerve pain, zofran/benedryl for nausea – but those are difficult to get in and keep down when he feels sick all the time. I’ve found it is best to give them while he is sleeping so at least he doesn’t have the psychological response. His counts have started to drop, as we expected from the MIBG therapy, and we did a stem cell rescue on Monday, a blood transfusion yesterday, and he’s getting platelets today. The blood in his vomit could be due to low platelets.

There are so many disconcerting unknowns right now – what was the effect of the MIBG treatment, if any? What is the cause of the pain in his arms and legs? What is the cause of the fevers? Will he be able to withstand another treatment, or will that just lower his already fledgling quality of life? And of course, how much time do we have? I keep thinking of the future, particularly of things I want to do with Ollie, and then I catch myself wondering if he will still be here. We are looking forward to a movie that comes out in September, and I am terrified that rather than a pleasurable treat, it will be a painful reminder of loss.

High maintenance travel - wheelchair, a neck pillow, a blanket under his legs, and a cushion for his tailbone.

High maintenance travel – wheelchair, a neck pillow, a blanket under his legs, and a cushion for his tailbone.