The ending of the new beginning...

Tuesday started with the now routine complaints from Oliver wondering when they were going to come and get him for his lumbar puncture with intrathecal chemo. He'd been fasting for it and hadn't eaten in 13 hours by the time they took him at 10:15 am, although I had tried to get him to eat something at midnight to no avail. He'll now get these LPs weekly on Tuesdays until his stem cell transplant, just as maintenance to make sure no more of those jerky lymphoma cells get in. So the LP went well and he ate toast out of my purse in recovery. My friend Kevin always teases me that I'm like Radar from MASH and can source anything and I'm doing it at the hospital too to be able to get Ollie whatever his heart desires, especially after procedures and hard stuff. 

So after Ollie had lunch (I got busy and completely forgot I hadn't eaten until 4:30...easy to understand why I have lost 12 pounds in the last months without noticing), the doctors came around on rounds and gave him the good news that they had no medical reason to keep him any longer if he felt well enough to go home. I think we were both in shock that this endless visit was finally over. We called Mario and arranged for him to come and get us by 3:30 and to be here to participate in a special event at 3:30.

Next the VAT team came in and changed his PICC dressing so we wouldn't have to come back to CHEO to do it tomorrow. Ollie was starting to get agitated, so I kept his mind off of it by asking him to tell me about the rare Beyblades he wants. At the beginning of all of this I'd just talk over his anxiety. Now I've learned to re-direct the conversation and get him talking about something he's passionate about to take his mind off of it. I ask coaching questions to try to lead him down the path I want him to be on to reduce his anxiety and anticipation of pain.

Next our Nurse Christine and student Nurse Anais changed his PICC caps, disconnected him from the line and fluids, and flushed and hepronized his PICC. When we're at home I do the last parts and it seems like forever since I have. They then gave Ollie his Neulasta shot to boost his neutrophils over the next week. We're still fighting with one of our insurance companies to pay the 20% of this $3000 shot, but thankfully the other 80% is covered by the other insurance company.

The psychiatrist came through our seemingly revolving door next. Ollie wasn't really wanting to talk much about feelings except the one where he felt we should be getting ready to go instead of talking. LOL I confirmed that we'll have a psychiatric consult in Toronto set up and thanked the doctor for his help.

After all of this Ollie went to the playroom to play Beyblades with his friend Lukas under the watchful eye of Maryse and volunteers in Child Life while I packed the many many things that have been acquired in our room in 47 days of living here . Lukas has been one of the only kids near his age on the oncology ward at the same time as Ollie over the last months. Lukas mainly speaks French and Ollie English, but they both understand the language of Beyblades and of loneliness and isolation from kids your own age. 

A little while later, Vanessa from physio came by wanting to practice stairs with Ollie to help him get in our house without Mario having to carry him. In typical Ollie fashion he was determined to show he could. After 47 days of not walking very far or doing anything very active, he stepped up literally and figuratively. He walked on his own steam up to the physio gym on the 5th floor (we brought the wheelchair for the ride back). The first step on the stairs was hard and it was evident he was nervous, but he kept going and then walked up and down three times! 

You wouldn't think 4 stairs for a normally active 7-year old was a big deal, but considering I sat in ICU a few weeks before so scared that he seemed to have had a stroke, was blind and may be permanently incapacitated, this was almost miraculous to me. He'll continue to get Outpatient physio over the next few weeks and in Toronto as inpatient when needed.

When we got back to 4 North I was told that Optomology wanted him to come tomorrow for another exam. Fortunately the team coordinator, Joanna called down to see if we could do it another day and they said come down now and we'll take photos of his eyes and the doctors will analyze them tomorrow. So off we went to Clinic C8 while Mario started loading the van with our numerous things. The visit including photos took about 15 minutes from start to finish. Amazing.

When we got back to 4 North everyone was ready for the big event. When a patient finishes their last planned admission on 4 North it is celebrated with a big noisy parade of nurses, health care aides, doctors, parents, kids, etc. The patient finishing gets to bang the gong and everyone cheers. I showed Ollie where the gong was and he excitedly banged it while everyone cheered and clapped. 

Then they told him to do it again because after 47 days and all he's been through he deserved it. 

There's nothing like the feeling of being surrounded by people who you barely knew mere months ago, but whom have been working tirelessly to make your child well and to encourage you every day to keep doing the hardest thing you've ever done in your entire life. I wish you all could have been there, too.

Ollie's friend Lukas presented him with the gift from 4 North for his bravery. They later hugged and it squeezed my heart so hard. 

We only wish Abby could have been there, but it was all last minute and happened on the day that she was on a field trip cross country skiing with her class. We've promised she'll be there when he rings the bell to signify he's beat cancer and is all done!

After the excitement, thanks to our dear friend Lori who brought a Merry Dairy Confetti ice cream cake last week that we'd been saving for a good day, we all had cake and enjoyed the happiness in 4 North together. 

As happy as I was, I felt sad saying goodbye to the staff and a few families we have gotten to know. I told our oncologist, Dr. Pinto that I felt like we were breaking up since I have to start "dating" a whole new team in Toronto. She promised they're still with us and will see us in the Medical Day Unit (MDU) before we leave and after we get back to follow up and keep him well. She gave me her email and hugged me so hard and I knew again how blessed we were to get these incredible humans on our team. It's so much more than a job to all of them and is clearly rewarding despite the inevitable heartache and loss that sometimes comes with it.

So we're home together at last. We're all tired and Ollie is still battling fatigue and mucusitus (like cancer sores in his throat from chemo), so we're keeping him comfortable with anti-nausea meds and popsicles. It may still be another long night, but at least we're home together and on the road to the next step to curing our warrior.

We're hoping for a few quiet days. Next week we're back at CHEO for another LP, scans, dressing change, etc. Then off to Toronto for a radiology consult add scans there for two days, then back here for 11 days and back to Toronto for the main event beginning March 25. 

If we go quiet for a couple of days, don't worry...we're just recharging and enjoying the simplest and most important pleasures to stock up on positivity and determination for what's coming next. 

A huge thank you to all of you who have followed, prayed for, fed our bodies and our hope, hugged, fetched for, sent messages of support and gifts to us. I can't believe we've been doing this for 5 months already (Abby didn't believe me tonight and had to count, too!), but that's in large part because you're all behind us making it so much easier than it otherwise would be. Big love to you all!

Steroids, Obsession and Exhaustion (Part 2)

Enjoying Valentine's cookies made by my dear friend and former boss, Ann.

Last night and today were WAY better than yesterday. The reduced steroids and new anti-anxiety meds are working. He slept most of the night, had a pretty good day and was in better control of his emotions.

He asked the Child Life Specialist, Maryse to do a few Valentine's crafts with him, had a good session with the physiotherapist (he's even been practicing his exercises), and even had a good chat with the psychiatrist.

When asked how he was feeling, he replied, "cooped up" and "far away from my friends". Based on this, Child Life and Psychiatry allowed him to have a special visit despite his isolation. He chose Catherine, who is a friend of the family's and has been Ollie's babysitter. As he explained, "...she's over 14 so can come to CHEO, but is still like a kid." So 16 year old sweetheart Catherine and her amazing Dad, Stephen dropped everything and rearranged their schedule to be here for him. Stephen took Ollie's stalker-like call today gladly and didn't hesitate to promise he'd make it all work. 

Ollie giving Catherine the Valentine and bracelet he made for her. This is my sweet and thoughtful boy again.

This family (including M-F and Francesca who have also been here every step of the way with us) are good people and have been so good to all of us throughout the last months. Definitely glad to consider them family.

Ollie is sleeping peacefully after a good day and I am writing and researching more drugs to inevitably fight with the insurance company about covering. 

I did met with genetics yesterday and neglected to share that, but will do so in another post soon. 

We have our video conference with Sick Kids Hospital on February 25 and will know more about next steps then. 

No idea when or even if we'll get home again before round 4 is supposed to start on the 28th. The doctors are hopeful that we might be able to get home for a few days. In the meantime, we're working on getting a few afternoon passes at least to get home for a few visits if we can. Will keep you posted!

Finally we, have lumbar puncture number 8 tomorrow. Hopefully 8th time is the charm to banish the lymphoma. 

Steroids, Obsession and Exhaustion (Part 1)

I didn't write a blog post yesterday because it was all too much for me and given I spent the night resting at home with Abby, I just wanted to focus on us.

Yesterday was a hard day. Ollie is on a super high level of steroids as part of his chemotherapy regime. As you've seen from the past few days' posts, they've been causing some aggression in him. Tuesday it hit it's peak. 

Since Ollie had hardly slept for three days and he was exhausted, aggressive and anxious, he had an outburst when his super kind doctors came to talk to us about next steps. We began talking about stem cells and Toronto. Despite us trying to gently explain everything to him, he completely freaked out about going to Toronto (a place he usually likes to go, but this time he intuitively knows it's not for vacation). No amount of explaining could calm him. He became so agitated that he was trying to run from the room so he got out of bed (remember he is still blind) and began trying to rip out his IV lines or grab the pole. I was forced to restrain him as the doctors tried to help and instructed the nurse to get him a sedative. He continued to fight, trying to even bite me and the doctors.

As a mother, I was heartbroken, scared and ashamed that I could not calm him. I understand that this is illogical and both the doctors and nurses later told me how well I'd handled it despite my feeling of ineptitude. 

As they got the sedative I was able to sit him on my lap and rock him and make "shhhhhhhh" sounds to bring him down a bit so that they could push the meds. While he calmed a bit, it was not enough so we finally got psychiatry involved (which I had predicted he'd need when they told us that he'd now eventually need radiation and stem cells). They came over and were able to see him in his agitated state and decided that he needed to stop taking the Atavin as in some kids it has the opposite effect causing rage versus calm. Guess as usual Oliver was atypical. His oncologists also reduced his steroids as they felt the side effect was not worth the benefits. 

One thing I'll say is our oncologists Dr. Abbott and Dr. Pinto really care. Their concern and compassion radiate out of them every moment you're in their presence. During this episode, the very pregnant Dr. Abbott tried to protect him and me, despite my concern for her and then after I'd calmed him a bit and got him back into bed, she sat in his bed right beside him rubbing his head and back, helping me sooth him. Dr. Pinto worked with the nurse to get the meds into him, then helped me to make sure I was okay, rubbing my back and arm. How could I not love these brilliant, empathetic, brave women who are working so hard to cure my son and to help me survive it all too?! What a difficult job they have, but it is one that they clearly consider a calling and they are definitely gifts from God in all of this.

Oliver's obsessive behavior continued throughout the day as he insisted he call Mario and would howl with rage anytime he was denied. Mario finally came over for lunch and fed him, then went back to work where he let Oliver do a video chat with him while he fixed servers and then came back to the hospital to switch with me at end of day as I desperately needed a break and to see Abby to be reminded that he will be well and our loveable child again one day soon. 

Abby and I had dinner with dear friends Maria, Casey and Sofia when I picked her up there and they insisted I come in. It was nice to catch up and be social for a bit. Then Abby and I headed home to snuggle, eat ketchup chips and sleep.