Saturday Sickness and Snuggles

Ollie still wasn't feeling great Saturday morning and the doctors tried a number of drugs to get rid of the nausea.

Finally we seemed to have found a magic combination with an anti-nausea patch called Scopolamine and an oral drug (which at first he fought taking) called Sucralfate. For the rest of the afternoon and evening he felt much better, although still a bit scared of "risking" eating anything significant for fear that he'd throw it up.

He even felt well enough to practice his physio with Mario to regain his strength and balance after a month mainly in bed.

His French teacher sent him some cool Brain teaser puzzles and Magformers which he enjoyed puzzling out with his hands. Amazing what he can do without his eyes. Always knew he was clever, but never imagined how quickly he'd adapt and overcome a challenge so big.

Abby came for the day but was upset at how sick he's been this week. Eventually as he slept she and I went to Trainyards for retail therapy and time together, talking and new Barbies changed her outlook. This cancer battle brought to you by Mattel!

Sometimes it's just all too much for Ollie and he gets combative. Daddy was able to calm him this afternoon with hugs and snuggles.

When he felt better and the, rest of our foursome went home, we got out the new Magformers friends and his teacher had bought and he built structures.

Then we sent Daddy Ave Abby crazy texts...

They sent one back...No idea who the porky is in the middle...

Ollie slept much better and more overnight as did Mommy.

Love sick for Valentine's Day

Imagine one nurse trying to get blood out of your central line in one arm while another gives you a poke in the other to get blood cultures done. Doesn't sound pleasant to any of us, does it? That's what my boy was up to today. And he was calm and cooperative while everything was happening. 

Specifically he was up to a fever of 38.8 as a result of a self-inflicted scratch on his belly button when he was agitated earlier this week. The fever meant he had to have blood cultures which can't be taken out of his PICC. 

As if that wasn't enough to make his day difficult his post-chemo gifts that kept on giving were heartburn, major nausea and vomiting. Normally in the three days post-chemo we can manage this at home with Ondanzatron (called the Tony Danza medicine by Daddy and Ollie) and Gravol. This time after a much harsher dose of chemo those were not enough and no combination of meds, deep breathing, ice chips, soda crackers, bread, etc. could change things for him today.

Abby was here this morning to chat with the social worker, so ask for of us were together for a few minutes this morning. The sum total of our Valentine's Day together. We rarely do anything romantic and usually enjoy chocolate and little gifts with the kids. So we did it with even less fanfare this year.

While waiting, she had to see Ollie throwing up and at one point leave the room so she didn't get sick herself. This is not easy stuff for anyone to stomach. She was picked up by friends after and went on to have a great fun filled day of sledding for her PD Day and youth group tonight, so her day got better at least.

Also while throwing up today, Ollie's NG feeding tube came up his throat and out his mouth. Scary moment for me and thankfully the incredible nurse Megan (honestly my fave hands down) was calm and quick, telling Ollie she had to rip off the tape on his face quickly and take the tube out. 

So you'll note the photos show Ollie without it. On the one hand he and I were happy it was out, but on the other, Ollie was stressed about having to take more of the meds orally. Fortunately Megan rearranged his pharmacy orders to put anything possible in IV form and anything else in tablet to avoid the gagging from tasting the meds. 

I had a good long chat with my brother, Cory today. I know it's hard because when your family lives so far away (he's in BC) they don't know what to do or say to help you. I told him just keep checking in and talking to me and being as normal as he can be with me. That I'll always take his call if I can and love him for wanting to know what's happening with us, so he's not bugging when he checks in. You don't have a lot of down time to talk or a lot of energy top talk when you do have time. But you still want connection with your family and dearest friends during hard times like this.

This afternoon, Ollie requested a special but short visit from Mackenzie (who is a teenager) who came with her parents Aunt Jenna and Uncle Vic. We know it wasn't an easy visit because he wasn't feeling well and seemed sicker than he normally is, but Mackenzie handled it with grace and compassion and we love her for dropping everything to come and be there for him.

He's now sleeping and I'm hopeful this will continue. 

Hope your Valentine's Day didn't leave you love sick and you enjoyed those that you love, romantic or otherwise.

Better get to bed and get whatever sleep I can. Night John-boy! ;-)

"A little child shall lead them..."

Ollie had a day of ups and downs. Mainly related to his steroids and "hanger" as he waited for his lumbar puncture this morning.

A high point was a special visit from good friends who we'll call H and E. We got special permission to have them come when they were at CHEO for an appointment at another clinic where H is being followed. H is also a brave warrior who has fought many health battles and continues to with an incredibly positive attitude. H was just what Ollie needed and he was thrilled to finally see a friend whom he could directly relate to. H and E brought gifts from their family and from the grade 2 classes at their school.

The visit and gifts really boosted his spirits and were a nice distraction. 

Ollie decided to join his school online for their assembly today. The grade 2's including his class were singing and he was eager to hear them. 

While participating, he also received the student of the month award for exemplifying the gospel value of hope. I was pretty touched that his teacher still does everything she can to make him feel part of his class this year. 

 Ollie also asked her if he could be online with them as his Valentine's for his friends were handed out. So this afternoon after his LP she made him a full participant in it and allowed friends to deliver their Valentine's for him to his bag beside the computer where friends could come and say hi if they wanted. 

Despite his outbursts the other day, when his classmates today asked him about going to Sick Kids Hospital in Toronto, he calmly and matter of factly told them he'd be going in a few months to get stem cells and was still at CHEO. I was moved to tears by the kindness his classmates exhibited and was so proud of them all. One beautiful little empathetic soul whom we'll call B excitedly told Ollie that he and his brother had both spent time having operations at Sick Kids, told him if he had any questions about where stuff was to just ask him and assured Ollie that Sick Kids has the funniest nurses. The ability that kids have to normalize things for and mentor each other constantly amazes me and I was very grateful to B and H today for their help.

Getting back to the lumbar puncture, although Ollie did have  significant anxiety before and after it, we did get great news that there are no lymphoma cells left in his cerebrospinal fluid. They do intend to continue LPs less frequently now, but will need to as part of his next rounds of chemo and to keep checking that the lymphoma does not get back in there again.

The optomologists stopped by this afternoon and said that both of Ollie's eyes are now seeing light and his pupils are reacting. This is an improvement as last week only one eye was responsive but slow. They said this is good news and they'll continue to monitor him for the next month or so. By the 6-7 week mark they should be able to tell if any of the damage is permanent.

In the meantime we are working with physiotherapists and occupational therapists to get him stronger, to learn how to get around blind and to relearn anything he used to need sight for. 

We are hoping to get at least some day passes soon, but need to have the OT visit our house first to ensure he'll be safe. Ollie scoffs at this and says he's been "born and raised" in our house and doesn't need anyone to tell him what to do there. LOL

Mario went over to be with him again tonight so I could spend more time with Abby. 

Wishing all of you a Valentine's Day filled with people you love around you!

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. 

Hope, but no dice

Today was a day of disappointments. Ollie was NPO at midnight, so he couldn't eat and was super irritable every time he woke from 5 am on. The steroids didn't help either. The worst part was that they were squeezing his lumbar puncture in today, so we had no idea what time it would happen and had to deal with Ollie's escalating bitterness about the delays.

His last LP he was cool as a cucumber before and after. This time he was angry and sad before and after. His cell numbers were still 3, but they needed to verify if these were actually lymphoma cells or not. The last ones are generally the hardest to kill.

He did get to meet his new CHEO Buddy (a mentoring program much like Big Brothers Big Sisters Ottawa that is great and dear to our hearts), Steve. Steve is a first year Med Student at University of Ottawa who has volunteered for this program to get a feel for spending time with pediatric patients. We thought it would be good for Ollie to have someone to talk to at CHEO who is studying medicine, but won't poke and prod him or make him feel like the patient  He and Ollie share a love for Beyblades, and superheroes. 

Today they just got to meet, but Ollie was disappointed.that they didn't get a chance to play since he was nauseous and ended up throwing up after his intrathecal chemo. Poor Steve got baptism by fire today with his first pediatric oncology experience, but later followed up with me to make arrangements to see him next week, so obviously not too traumatized. 

I had a few meetings with Rehab, Physio, Occupational therapy, palliative care and our oncologist. Nothing really new or changed. 

We also had a visit from the social worker who shared that Abby is only a partial match for a stem cell transplant and Mario and I are not good matches. It makes sense since a sibling is the most likely donor and even then only has a 25% chance of getting a good match. Abby and Mario were sad and disappointed, but we all agreed that we are going to find a match on the stem cell registry list and in the meantime will raise awareness of and encourage others to get swabbed.

Unfortunately many of us will not qualify since the ideal donor is 17-35 years of age and male. The rest of us can still give blood and plasma though. For more information, see: 

Blood.ca. They'll even send a swab kit directly to your house. Our school's principal has also reached out to volunteer to host a swabbing event to help. So we'll share more info when we know more.

We're not giving up. It's still full speed ahead to get Ollie well, we're just going to need an extra special angel to help with the last part. Please keep the prayers coming. 

RSV and Beyblades

Quick update...Ollie's new chemo is going well, with no real nausea and the sodium issue seems to have been resolved. That said, the steroids that are part of chemo are making him quite aggressive and more anxious and last night I had to get the nurses to give him medication to ensure he didn't climb out of the bed and take off like he was threatening to do. It was very frustrating and stressful. I felt horrible medicating him, but was worried for his safety. When he calmed down he started to cry and apologize for his behavior. I assured him I wasn't mad and knew out was just the steroids making him do it. 

Today he was with Mario while I spent a bit of time with Abby and Ollie insisted on stalking me all day, calling me incessantly to see if I had bought the Beyblades he wanted from his allowance and when I was coming back to hospital. Nearly drove me (and Abby) insane...again just a byproduct of the steroids.

We came back to the hospital to have dinner together and learned that the cough and runny nose he's had since last night is the very common RSV virus. So now he really is in isolation Remember that he started out in Isolation 25 days ago, and when they figured out it wasn't meningitis, but actually lymphoma causing his issues, they lifted the Isolation. So now no visitors allowed other than parents again. Sigh. 

I swear the diagram of RSV looks like a Beyblades, so how could Ollie the Beyblade King avoid it?!

Another lumbar puncture (LP) tomorrow with intrathecal chemo in his spine. He is not thrilled.

So wish us a good night despite everything. One step back today, but at least no big slides back.