3rd Re-Birthday/Hero Day - A Love Letter to Sick Kids and CHEO

[Photo Description: A split image. On the left is a photo of mom Dawn with eyes closed while lying with Ollie, cradling him from behind as he slept in his hospital bed at Sick Kids Hospital in the Oncology ward in April 2020. It had just been confirmed that Ollie had relapsed in his central nervous system a second time while readying to go to transplant. On the right side, in April 2023 Ollie stands on the stairs at home in Ottawa with one arm in the banister and the other around Dawn who has her arms around him. Both are smiling and healthy.]

There are many kinds of love. The first love one has for one's parents or whoever nurtured you from birth. Some are lucky enough to have the love of siblings. Others simply the love of extended family. Love for friends, especially those who share your history and/or hard times. Romantic love for your partner made even bigger if you become parents together. Love for your children, whether born to you or gifted another way. 

But over the past 1337 days since my child was diagnosed with a critical illness that left me contemplating a possible life without him and ultimately getting to keep him, I have come to understand that there is also a special love that you have for the medical team that saves your child.

[Photo Description: Ollie sleeping after receiving the Benadryl before his stem cell transplant, while a Sick Kids nurse in PPE prepares to start the transfusion of Abby's stem cells.]

And so I am writing this love letter to my son's medical teams at Sick Kids Hospital and CHEO on this, Ollie's third re-birthday and our daughter Abby's 3rd Hero Day. Three years ago when then 8 year old Ollie (who had gone blind during his first of two relapses of his Anaplastic Large Cell Lymphoma ALK+) finally got his sister's half match stem cells at Sick Kids Hospital after a very intense and bumpy cancer journey, we breathed a sigh of relief, but knew that the hard work of recovery and survival was just beginning and there were no guarantees that it would work. 

[Photo Description: a split screen image of a video chat that we had with Abby while the transplant was started. Given out was early pandemic she was not allowed to be there in person even though she was the donor, so this is how we made her part of the momentous occasion. The top image shows Abby smiling as we show her the bottom image, which is the bag of her incredible stem cells hung with other bags of fluid and medication to be administered.]

To recap, it was just months after the COVID-19 pandemic had started. We'd arrived at Sick Kids from CHEO the first time for stem cell transplant in the second week of the very first lockdown after 6 intense months of cancer and relapse treatment at CHEO. Because of the pandemic, planes were being grounded, so his then 11 year old sister suddenly became his donor. Her cells were harvested at Sick Kids on March 31, 2020 and just 8 days later he relapsed in his central nervous system a second time. Unfortunately this was the week before he was supposed to start his total body radiation. We stayed in Toronto for 5 weeks after this to try a cancer inhibitor drug to no avail. 

[Photo Description: Abby watches as her stem cells collect in a bag hung on the Apheresis machine in the Dialysis Unit at Sick Kids Hospital on March 31st, 2020. The lines running her blood through the machine to strip out her stem cells can be seen beside her.]

After consulting with our CHEO Oncology team we opted to go back to Ottawa to try brain and spine radiation (thank you to the Ottawa Cancer Centre Radiology team at the Ottawa Hospital) combined with a brand new TKI obtained under compassionate grounds.  

[Photo Description: Members of the radiation team at The Ottawa Hospital put Ollie's radiation mask on him while he lies on the table. The team had his mask decorated with the cartoon character Johnny Test, which was his favourite. This radiation mask now hangs proudly like a trophy head in his epic playroom.]

To our delight and to the shock of his transplant team, this back pocket plan (designed by his CHEO team after his first CNS relapse) worked! By the end of June 2020 he was back in remission and 6 days later we were back at Sick Kids to ready for a second attempt at a transplant. 

Total Body Irradiation (TBI) at Princess Margaret was intense, but went well and we are grateful to the team there for their patience and help. 

To our shock, transplant went very smooth (a far cry from our very bumpy cancer treatments before) despite the added stress and fear of doing it during the first months of pandemic. Chimerism (which measures the number of donor cells present in the recipient) was 100% from the first test and has remained so the entire three years since. Our cheeky daughter promised us her cells would be overachievers and they certainly were!

[Photo Description: Abby, Mario, and Dawn surround Ollie in his wheelchair in the Atrium near the elevators on the 8th Floor at Sick Kids on discharge day +38. All are wearing masks and looking jubilant.]

Ollie was so well that after being discharged on +38 after transplant, we only stayed nearby until +58 and then were sent back home to have CHEO do the post transplant care since. We are about to have our final of three years of regular bloodwork and checkups post transplant at CHEO in August and I am actually weepy at the thought that we'll only see our oncology team once a year after this, despite how grateful I am to be at this point.

He's now fully re-vaccinated, breezed through COVID-19 just two weeks after his third vaccine for it in March 2022, has been unbelievably well, stopped his Lorlatinib TKI a year ago this week, lost 26 pounds of the weight gain from the TKI, is mentally well thanks in large part to CHEO Oncology's Psychologist and Social Worker, and remains in remission as confirmed by scans last month. 

Even better, he's living his best life, continuing to take skateboarding lessons, earning his orange belt in karate this year through Kids Kicking Cancer Canada, playing with the Canadian Blind Hockey Association last winter, Beep Kickball in the spring and summer, and representing his elementary school (grade 5) on their floor hockey and track and field teams. 

[Photo Description: Ollie poses for a photo during hockey practice with the Canadian Blind Hockey Association/Ottawa 67s Blind Hockey team in February 2023.]

He also does an amazing job advocating for better childhood cancer and blindness care and awareness whenever he's asked. He was featured (skateboarding blind) in a national Canadian Cancer Society Palliative Care campaign in January and spoke to Parliamentarians on behalf of children with cancer at their Day on the Hill in April. He and his CNIB Buddy Dog Hope will also be featured in an episode of AMI-TV's Blind Trust: A Guide Dog's Journey on August 22, 2023.

He will also be speaking on behalf of Young SIOP and I on behalf of Childhood Cancer International in the session on patient-centred care at the upcoming SIOP Congress in Ottawa this October. So if you're there, come by and say hi! I am also thrilled to contribute to several childhood cancer advocacy activities, many within CHEO and perhaps most notably with the new Canadian Pediatric Cancer Consortium (CPCC) as one of the Persons With Lived Experience Co-Leads for the Education and Training Matrix. We never take for granted how very lucky we are to be here today and do our best to give back where we can.

[Photo Description: Ollie and Dawn pose in front of the Canadian Cancer Society backdrop on their Day on the Hill. Ollie looks very handsome in a white dress shirt with bow tie and black dress pants and holds his mobility cane and Mom's arm.]

This love letter is for each and every single person in hospital who helped my son to survive. No contribution was too small and we are grateful for all of them including, but not limited to (in completely random order):

- The ENT clinic at CHEO who helped us to get to the bottom of the bump on his neck and get to diagnosis in 28 days after trying to figure out with our pediatrician for 4 months what it really was;

- Our incredible team of Oncologists and transplant doctors, lead by Dr. Abbott, Dr. Alexander and Dr. Ali;

- The people who cleaned his rooms and kept them bacteria free (especially when he had no immune system after transplant and during the pandemic); 

- Health care aids who transported him safely to so many operating rooms, scans and tests, all while keeping him and mom calm and often while telling us great stories that distracted us during stressful times;

[Photo Description: The 4 North Oncology Team and fellow patients at CHEO cheer and celebrate as Ollie rings the last planned admission gong (after his first central nervous system relapse during front line treatment) with Mom and Dad supporting him as he stands without his wheelchair to do so.]

- The incredible nursing staff in the MDU (especially our nurse case manager, post bone marrow transplant nurse, POGO Interlink nurse, and Nurse Practitioner), 4 North, Surgical Day Unit and PICU at CHEO and the Sears Clinic and 8th Floor, especially BMT Unit at Sick Kids; 

[Photo Description: Nursing staff in the Sick Kids BMT Unit give Ollie a send off with cheers, music and pom poms while daddy pushes him in the wheelchair on +38 discharge day in August 2020.]

- Lab technicians, pathologists and researchers who did the many tests to arrive at a rare diagnosis, identify infections, and to help us monitor too many risks to count over the past three and a half years;

- Imaging technicians and radiologists, often who dealt with our urgencies and were called in the middle of the night to do scans when he was relapsing or had to deal with our intense "scanxiety";

[Photo Description: Ollie sits with his leg in a bone density scanner at CHEO while a technician sits at the computer beside him.]

- The CHEO Genetics team and those at PROFYLE for helping us to identify his specific mutation that lead to a targeted therapy that was obtained under compassionate grounds, and got him back into remission and on to transplant after his second relapse when it looked doubtful that anything would;

- Pharmacists who helped us to find the right cocktail for every situation, creative ways to get adult meds down his hesitant throat, and ensured that despite it all happening during a global pandemic across two cities, we never had to worry that the lifesaving drugs wouldn't be available to us;

- Palliative care at both hospitals and the PICU team at CHEO who taught us that they do so much more than pain management and calling them in does not mean end of life;

[Photo Description: Ollie sits in his wheelchair at CHEO while recovering from his first relapse and is surrounded by therapeutic clowns, who were causing mischief and giving out lollipops.]

- Psycho-social teams including child life specialists, social workers, psychologists, psychiatrists, therapeutic clowns, music therapists, art therapists, volunteers, etc. You brought fun and compassion to a very scary situation for us on a daily basis and I am certain we could not have walked away with any good memories of this period without you;

[Photo Description: Ollie strums a ukulele in his hospital bed while a Music Therapist at Sick Kids plays the xylophone in an isolation room while waiting to engraft during transplant.]

- The radiation teams at the Ottawa Hospital and Princess Margaret Hospital who worked together flawlessly to calibrate both brain and spine radiation and total body radiation within mere weeks of each other and made something so very scary almost easy for us;

[Photo Description: Princess Margaret Hospital radiation team prepares Ollie for total body radiation, sticking a device to his back to measure the exact amount of radiation being delivered.]

- Other "ologists" and specialists that treated his specific relapses and side effects including neurologists, endocrinologists,  cardiologists, ophthalmologists, occupational therapists, physiotherapists, respiratory therapists, bone specialists, auditory specialists, retina specialist, dental clinic, etc.

[Photo Description: Ollie prepares to have a pulmonary function test in February 2021 at CHEO. The respiratory therapist in PPE with his back to the camera is a childhood cancer survivor himself.]

- ER staff at both hospitals - when you are a cancer family you are bound to spend a lot of time in emergency and we are grateful for your efforts to minimize our wait to be unexpectedly admitted when needed;

- The Vein Access Teams (VAT) in both hospitals who quickly became among the most important people on our team;

- All others in senior leadership, administration and services - e.g. scheduling, admitting, cafeteria, laundry, maintenance, technology, parking, HR, finance, fundraising, communications, etc. I am certain you rarely get thanked by families, but all of you keep the hospital running seamlessly and we know during the pandemic this took extraordinary effort;

-  The Apheresis/Dialysis Unit for helping us so much on stem cell collection day and showing us what a fun place Sick Kids could be with your Tick Tock Dancing to entertain your young dialysis patients;

- Food services and restaurant/cafe staff who stayed open and served us during the early days of COVID despite the fear and unknowns;

- Anyone and everyone else I have forgotten to mention by clinic unit or specialty here. It literally took an army and my poor brain is still reeling at the magnitude of what you all did for us.

Gratefully we remember all of you and your contributions on this day and every time we look at Ollie, as he is living proof that an army working together with science and hope makes miracles together. We will never be able to adequately thank you all for saving his life, so we will keep doing whatever we can to help you to at least save others, too, through our advocacy and fundraising efforts. Know that we will never forget the thousands of kindnesses that you sent our way.

With love and gratitude always,

The Acosta-Pickering Family:

Dawn, Mario, Abby and Ollie

P.S. - Please share this with any who may have helped us at all four hospitals or who just need to be reminded of how important their work really is today and everyday.

The PICC Fix

I watched the sun come up over Sick Kids, the Toronto General, Mount Sinai and Princess Margaret Hospitals last Saturday morning morning. I wasn't up because of a burning desire to commune with nature, but rather with eyes burning from fatigue, banished by my son from his hospital room because he was angry at the world and mama got the brunt of it.

It was a really rough weekend. Mario spent Saturday evening and Sunday during the day with him. He was so upset about the IV and PICC issues and then to add insult to injury, because he had to go into the OR today to get his PICC fixed, he had to have ANOTHER COVID-19 test (#6!!!)!!! 

While Mario did his best to get Ollie to eat real food (especially as they had to stop the liquid nutrition called TPN because his PICC wasn't working properly), everything was overshadowed by Ollie's stress and agony over the IV and PICC. 

He did have moments of fun with Daddy when he let himself.

Ollie had a rough Saturday night with lots of bad dreams and waking up missing me. Naturally he loves daddy, but as he's told me before, "Daddy is best at fun and Mommy is best at helping with feelings." Mario basically told me same Sunday. They waited for me to do the COVID test yesterday and Daddy stayed to help us. 

Mommy offered to let Ollie help her to do a COVID test on herself. In the end Daddy took one for the team and had Ollie help him to put the swab up his nose to show him that if he stayed calm it won't be so bad.

It took a while, but we did get Ollie's done with minimal crying and anger. 

Once that was done, Ollie was happier and more engaged in play. He still had moments of upset and anxiety on Sunday knowing that he'd likely have to have the PICC replaced in Monday. He also had a restless night Sunday.

On Monday they confirmed that there had been a cancellation in the OR and they could take him at 2:30 pm. 

It was our first and although not a bad one, hopefully our last experience in an OR at Sick Kids. It was done through the Image Guided Therapy (IGT) unit. They were prompt.in bringing us down to the IGT on the second floor, but then we waited an hour to go into surgery. Thankfully Ollie was calm and slept while waiting. They didn't even need to give him any extra meds to relax him before the general anesthesia.

It took about an hour and I waited in their very socially distanced waiting room. They had to remove his previous size 5 PICC and replace it with a size 4 because they wanted to give his vessels a break. Fine, but if he rejects the stem cells for any reason and we have to do a second try at it, we'd likely have to go back up to a bigger line for transplant. Since this is central line number five in the past ten months we are going to be cautiously optimistic and hope that he'll only have this one in for a few more months post transplant to allow them easy access for bloodwork and to push meds if ever needed and then he'll never need one again!

When he came out he was okay in recovery, but became angry as he became more lucid back in his room. Mario and I both stayed until he was calm. We've seen this many times after surgery as the anesthesia seems to make him aggressive. 

He did finally calm down and I was able to head to the condo to see Abby and my mom and stepdad who had come up on Sunday to spend a few days with us before Abby leaves for Ottawa. 

As always Mom arrived loaded with groceries and fed us too well for the few days they were here. 

They would have loved to see Ollie, but because of COVID and him being in the Bone Marrow and Stem Cell Transplant Unit, that wasn't possible, so they promised to come back to see him when he's back at the condo before we head back to Ottawa. He was very sad not to see them in person.

Tuesday Ollie was pretty tired from his surgery, but other than a bit of tenderness in his arm, he felt okay. 

And so began our more aggressive trial and error with solid foods. He can't be discharged until he's eating solids and able to take his meds orally. 

So far there are few tastes that he likes, but my family (especially on my dad's side) will appreciate that dill pickles are something that he does want. Wednesday night he managed to eat a bit of a ham (no deli meats for him due to possible bacteria, but he can have the packaged Maple Leaf without preservatives and as long as it is a brand new package), mayo and pickles sandwich and was thrilled to find something else he can tolerate. Watermelon is also okay. So are ring pops! LOL We'll keep trying until he is eating enough calories that they can take him off of the liquid nutrition (for now they have reduced it).

 

As for meds at home, he'll be on Tacrolimus which is an anti rejection drug; his Lorlatinib to ensure all of the cancer is gone and there's no relapse of lymphoma; Ondanzatron for nausea; Hydrocortisone to regulate his adrenal system until it can function again normally; and vitamins. Thankfully they will be spaced out several times a day and he's no stranger to this type of routine. We've started the Lorlatinib two days ago and the Tacrolimus orally today and each day this week we'll work up to having them all orally administered.

On Tuesday he also had his weekly ECG to check his heart and a visit from Optomology. His eyeballs have been hurting him on and off the last few days. It could be the after effects of radiation as we saw about a month after his treatments in Ottawa, but our fear is always that it's lymphoma still in his brain. Thankfully the Lorlatinib would target any lymphoma cells left and the optomologist said she saw nothing to be concerned about, that the optic nerve is clearly significantly damaged but doesn't look inflamed as it once was. She suggested it might be dryness or fatigue causing the pain, to monitor it and let them know if it persists.

We're finally moving in the right direction again and plan to stay that way so that he can come back to the condo over the next week and maybe even be able to spend some time with his sister before she goes. 

Thanks for your continued interest! 

Second chances

Thursday was Ollie's final day of Total Body Radiation at Princess Margaret Hospital. The morning session went smoothly with no issue at all! We said goodbye to the very sweet Susan (she coordinates radiation at Princess Margaret for the Sick Kids patients) who had a clinic to run at Sick Kids and so would miss our final radiation session. For health care workers like her it is more than just a job and I was impressed by her dedication to the kids and families she serves.

Ollie and I went to Tim Horton's at Princess Margaret as a treat on our way back to the condo. Given he was doing well and they knew how much he agonized while waiting, Susan and the Sick Kids Nurse practitioner had arranged for us to skip a clinic visit if he was feeling alright.

Back at the condo he was pretty well. He was not interested in eating much, but that's normal with radiation. So we watched cartoons and built Lego mini figures while Daddy and I finished readying everything for his hospital admission tomorrow.

Ollie will be in the Bone Marrow Transplant Unit from Friday morning through until he's well enough to leave (at least 6-8 weeks if all goes according to plan). Although he'll be in a regular hospital room there for the next three days until transplant on Monday, we need to prepare things for his isolation room now. 

This means sanitizing anything and everything we'll be taking in, and as much as possible taking in brand new things. Anything we take in from the outside has to be double bagged so that when we enter the clean room attached to his room we take the exterior bag off and throw it away, and sanitize anything inside of it again. So by double bagging you get rid of the outside germs and can wipe down the inside bag and take it in with everything washed and sanitized from home untouched before going into the isolation room. We bought antimicrobial bags that cost a small fortune to be throwing away, but we are taking no chances. One wall of the isolation room is also a HEPA wall that keeps the air clean and bacteria free. This is serious business.

The condo we rented this time has a full-size brand new washer and dryer. I have been, and will surely continue to be glad of this since we need to heavy duty wash everything often, including bedding at the condo to keep bacteria at bay. The crazy part is we all have bacteria that lives and grows in our skin, in our gut and pretty much every part of your body inside and out. So imagine trying to avoid bringing bacteria into his room! Impossible! 

But we have no option but to try to reduce as much as possible, as he'll have no immune system for the next 3 weeks or more and the smallest virus or bacteria could be life or death for him. That's the part that I find scariest...that unknown, evil presence that I cannot see, feel or smell. Like COVID-19, but amplified a hundred fold in its likelihood and danger for him.

When we went back to Princess Margaret yesterday afternoon I thought the last session would be easiest. Ollie was pretty sleepy so I figured he'd sleep through most of it.

And he did...until we had to flip him onto his front to radiate his back.

After we woke him to do this he was unbearable. The first head and shoulders treatment is 10 minutes, then they move the bed, do 4 minutes for torso, then move the bed again and a final 4 minutes of feet. From the start of the ten minute treatment he cried and screamed that he couldn't lie on his tummy or turn his head. We had to stop the machine repeatedly, go in to settle him or reposition him after he moved in anger and continue on. After he finally got through the ten minutes he refused to go on and do the last two parts. 

Thankfully the technicians helped me by assuring Ollie that they'd stay all night if needed to get it done and no one was leaving until it was done. I tried understanding mom and tough mom, but neither was getting through to him. I took deep breaths to keep my cool, stepping away to let the very patient technicians try to convince him.

Finally, exasperated with all of us, Ollie shouted at us to just get out and get it done! Normally I'd make a big deal about not shouting and treating people badly, but we all just wanted to get it done. So we got out and went into the booth where I decided to talk to him on the speaker about a package that we had ordered of what else, but...Beyblades. As soon as I got him talking about their technical specifications it was like a switch got turned off and his anger, pain and impatience were gone.

The four minutes whipped by and we easily moved the bed and got him settled for the last part with me asking him a bunch of other technical questions about the differences in Beyblades. Thank God I know more about Beyblades than I ever really wanted to know. The last four minutes sped by and he was allowed to move his head and arms for the last part so no more complaints. Beyblades for the win!

After his treatment, they helped him fill the last square in his radiation chart with a super hero sticker and asked if he wanted to bang the gong. He wasn't sure because he was tired, but I encouraged him to do so because it was a big deal to have finished it, and he never got to ring the radiation gong in Ottawa. 

So I fiddled with Instagram to go live with the gonging at Abby's request since she and Mario couldn't be there. She missed the gong at CHEO at the end of Ollie's treatments in the oncology wing because she had been at school and didn't want to miss this one.

At the end of his gonging he was pretty pleased, but still muttered, "Radiation sucks." Truer words were never spoken and are now recorded for posterity. LOL

He got a lovely bag of gifts from Susan and the team, including some thoughtful transplant gifts for all of us. There is no budget for this stuff at any kids hospitals, so they all rely on donations. Susan had told me that one of her adult patients started doing a toy drive for this on her birthday three years ago and each year since had a car load of donations. Sadly that lovely woman passed away from her cancer a few weeks ago and Susan just picked up the last batch, which her family had collected in lieu of flowers for her funeral. When we are done here I plan to see what we can do to fill that gap and keep paying forward her generosity for future Sick Kids' radiation patients. So friends in Toronto who keep asking how you can help, hold that thought because I will be asking eventually and will need local assistance.

When Daddy and Abby picked us up, we went back to the condo and hung out together for a bit, but Ollie was in bed quite early as he was spent. 

Mario and I had a chat, talking quietly about the things we were afraid of and reassuring each other that we've been through so much worse already, made it through and we will this time, too. We've always talked a lot to each other, but never as openly about fears and stress as we have these last few months, so we've obviously learned a lot from Ollie's journey, too. We still forget sometimes and have meltdowns, but there's an even bigger and stronger tie that binds us now and allows us to be more vulnerable with each other than we've ever been in our almost 16 year relationship.

I finished packing and spent time with Abby before bed. She was very sad and worried. So we tried the Worry Box exercise suggested by the psychologist and took turns writing worries down and put them in a box to be shut away before bed. 

"I'm worried that...

...the transplant won't happen...won't work...will make Ollie very sick...that he'll give up...that we'll be too tired too make it through...that one of us will get sick and pass it on to him...that COVID will take him even after transplant...that we're not strong enough to survive all of this..."

Don't get me wrong, we're confident most of the time that everything is going to be fine, but as strong and determined as we all are, we all have moments of fear and doubt. I believe that's what Ollie's freak out about his last radiation session was. He knew that by completing radiation it meant he was going to be admitted for chemo and the Bone Marrow Transplant as he knows it will be months in hospital again. The psychologist told me that freak outs are actually healthy (who knew?!) and help the kids to get out all of their big emotions rather than bottling them up and not facing their fears.

Friday morning we got up, got Ollie and ourselves bathed (he was too tired last night) and readied to go to the hospital for 8:30 am. He tried to tell us he wasn't going, but we told him let's just do one thing at a time and see where we get. We teased him and joked with him and soon he wasn't fighting it anymore.

We woke Abby to say goodbye and it was hard for me to see how they clung to each other...each like the other was a life preserver in a turbulent sea. Then she went back to bed, which was easier than staying up alone and feeling sad when we left her behind for a couple of hours. We are grateful to be just a block away from the hospital so she is not alone for long.

Thankfully with COVID restrictions reduced, two parents can now be with admitted patients, so we drove the  over to bring all of the stuff up. When we pulled up to the parking garage, the security guard asked if we had an appointment and Mario said, "We're here to get our son's stem cell transplant." and then it really hit me that we're here and it's really happening. I felt a moment of simultaneous elation at the fact that we made it back from the abyss of double relapse and a complete panic at what we were knowingly now driving back into. Fear. The Unknown. 

I teared up, took this pic and then prayed for strength and hope to return. I took three deep breaths and heard a voice inside my head (was it me?! God?!) say, "You've got this. This is IT."

Admission was easy and Ollie was practically chipper. He talked the nice nurse's ear off while she took his vitals and answered our questions.

He was delighted to try a sitting scale! He's lost 3 kilograms since they took him off of the Dexamethasone. 

He was content to chat with Daddy about Lego while we settled in.

A doctor from oncology whom we'd seen in the ER last time and was so patient and kind is now doing her fellowship in BMT and remembered us! She checked Ollie out and answered a bunch of our questions before rounds.

When she left with a promise to come back, I read all of the materials...stuff that would be helpful to get BEFORE admission and I wish they'd just post online!

The boys built some Lego while I read.

Mario went back to the condo to be with Abby and work for the afternoon. 

They started Ollie on rapid hydration to prep for chemo.

The transplant doctors came to review the plans and drugs. 

Ollie's chemo started and took about an hour. He was relaxed and happy. What a difference 9 months, 4 rounds of chemo, more than 30 lumbar punctures, 19 sessions of radiation, and over 100 days of being inpatient at hospitals has made!

The pharmacist came and went over in detail the new meds that he'll be getting and answered questions. 

Ollie felt some nausea, which we managed with Ondanzatron and Gravol and he slept part of the afternoon.

The social worker, Sonia came to see us and welcomed us saying how happy she was that we made it back. It felt great having two staff here remember us and be so kind. I think my poor mental health last time didn't allow me to give people here a fair chance, so I'm glad to be here to have a second chance to get to know them.

Since we're not in isolation yet, Mario came back at dinner to let me go back and eat with Abby. I did a few things at the condo, got some more food to eat in hospital and went back.

Ollie had thrown up twice, but had more meds and was feeling better although tired. 

He's peeing every hour due to the rapid hydration used to clear the chemo out quickly and protect his organs. It's been a while, but it's all coming back to us now.

He asked me to get in bed with him, so I took this pic. 

In the blog I wrote when we were last admitted here in April with relapse I took another pic in bed with Ollie. I was crushed and trying so hard to hold it together. The pic was raw and I felt that way. Bruised and beaten. Today we are back. Stronger. Ready. Hopeful. Happy. Grateful.