Fake it until you make it...

While his smile is not yet genuine, he's trying...

Ollie slept a lot today, but did have more moments of lucidity and being able to talk to really talk to me. It started at 4 am when he woke and asked me for a hug, then asked me calmly why he couldn't see. It was the first time he hasn't cried out in agony about his loss of vision. 

He did still sleep a lot today, but his pain was lower, he was able to articulate what he needed and got up to use the commode. So he's getting stronger and a bit better. 

Better was enough to be transfered out of ICU and back on to the oncology ward. Not well enough yet to see, have normal conversations all of the time or feel comfortable yet. He is still on a lot of pain medications, but they took the catheter out as he's started eating soft stuff like yogurt and bananas.

Mario's mom stopped by the hospital, but we missed her as we transitioned from one ward to another. Stephen was also kind enough to come by and bring Ollie his favourite strawberry banana smoothie from Tim Horton's. He stayed to visit with the boys while I ran off to meet Abby.

Mario is there with him tonight and the breathing issues aren't 100% resolved yet, but he is also exhausted today.

I took Abby to an info session tonight at one of the middle schools she is considering going to in September. After we went out for food with other families from her current school. It was nice to catch up with them a bit, but also hard not to get distracted by texts from Mario. 

Now I am lying in our bed with Abby snuggled up on one side and Chewbacca the cat nestled on my chest, purring away. 

His regular round 3 of chemo is expected to begin tomorrow and another lumbar puncture is scheduled for Saturday with inter-thecal chemo in his spine.

So your prayers are working and please keep them coming. Hoping for an even better day tomorrow!

A "Quiet" Day

It's been a pretty quiet, stable day. That's a good day right now and we'll take it.

Ollie slept much of the day with little pain after a rough night of breathing issues. 

Mid-afternoon he had another lumbar puncture (his 5th so far, with 4 in the last 12 days) to remove the extra cerebrospinal fluid that is adding pressure on his brain. This time it was less than the previous two times, so this was good news. They also gave him the inter-thecal chemo inn his spine. I told Ollie there is a war in his brain between the chemotherapy warriors and the lymphoma villains and the warriors are winning so far, blasting the lymphoma out.

Neurology came by and said his EEG shows that he does not have epilepsy, but there is irregular activity in his brain and it is evident with his blindness that there is more to figure out.

Acute Pain Services added Melatonin to his orders to try to jeep him sleep better. Hoping that works tonight. 

Dear friend, Toni came to bring me delicious dinner and all the news from St. George.

All in all a simple day (funny that a simple day now includes a lumbar puncture).

The Matching Game

It's funny what you can see in someone's eyes...joy, sadness, confidence, pain, mischief, anger, laughter, fear, exhaustion, determination, defeat. When I look at this pic I see mainly the negative stuff with a bunch of determination. Yesterday I looked in the mirror and saw rapid aging and pain. Today more determination. There's fear and determination in all of our eyes in this photo. Likely because as scary as it all is, we three were together without our fourth so that we could have a test to see if any of us could save his life.

We all still look exhausted, though. How could we not?! We are being asked if we are sleeping much. A bit. Last night Abby and Mario went to bed super early and slept better when they knew Ollie was out of his procedures. When Ollie was comfortable the ICU nurses insisted I take a parent room in the adjoining Ronald McDonald Family Lounge to get some real sleep and they promised to come and get me if he needed anything. I slept 6.5 hours as woke wondering why no one had woken me. Turns out Ollie slept that whole time, too meaning he had a better night as they gave him a seizure prevention medication just in case. 

Ronald McDonald Family Lounge Parent Room #3 (of 4). Sofa folds down so you're not so cramped on a single folding bed chair like rooming in with your child.

He did wake up very upset to have a feeding tube and catheter in though, and was hard to console. I think today I have been more patient than ever in my life. So I guess I am learning and getting better at it because I cannot be upset with my baby with everything he is dealing with right now.

He had a test this afternoon on his eyes to see if the optic nerves were working or not. The CTs and MRI did not show any reason why he should not be able to see, yet he is still blind. Thankfully Ollie slept through most of the test. Neurology came by and told us the test proved that he absolutely cannot see anything, but Seville they can see that the signals from his eyes are getting blocked in the optic nerve fairly close to his eyes, they can't see any evidence that they are actually damaged. In short they cannot see a medical reason why he cannot see. So they can't tell if it will be permanent or not. We can deal with permanent blindness if that's the way it turns out, but I have hope that because they don't see damage, it will resolve once we get the lymphoma out of his brain.

On that front, the lumbar puncture (LP) last night showed that the lymphoma cells that were at a level of 900 when they did the first LP are now down to 100! So the inter-thecal chemo that they're injecting into his cerebrospinal fluid is working and will likely be done again tomorrow.

Mario and Abby met me in the CHEO lab this afternoon so that we could all be tested too see if any of us are a bone marrow match for Ollie. I went first and was done in under 3 minutes. 

Abby begged Mario to go next because she was a bit anxious. That was not a great idea as he has the worst veins and they poked him in two different places and got nothing. Abby was stressing that same would happen to her, but I assured her she had inherited my good veins. 

Finally the technician sent Mario to another technician who made out third time lucky for him while at the same time Abby was being hugged by me in the other room while she bravely got hers done on one like mommy. She was apologetic about her fear about it and told me it wasn't really about the poke, but just that it made everything so real. So wise for 11 years old and so unfair that she has to even think about whether or not she can save her little brother's life. 

She also desperately wants to see her brother, but we've had to ask for a special exception to the sibling ban that CHEO has during virus season. We're hoping by the weekend she'll feel well again and be able to come up and visit him for the first time in over two weeks.

Now we wait up to two weeks to find out of any of us are a match.

We have no idea when we'll be going to Sick Kids Hospital in Toronto yet as we don't even know if we have a donor yet.

There was also an EEG today, but we have no results yet.

I had chance meetings with friends Jamie G., Kim A. and  Cata C. today at CHEO so the hugs were all so appreciated! A call from super mom Samar whose son had leukemia four years ago was helpful, too because she can relate on a level like (fortunately) few really can.

Ollie also asked to see his Aunt Jenna and Uncle Vic, so they came by tonight. It was a beautiful thing. Ollie who has been so mired in his pain and suffering perked right up and had totally articulate and normal conversations with them. His day nurse was shocked as he hadn't been lucid all day. Basically he just needed some normal and not to be treated as the patient for a bit. It reminded me that my bright and funny little boy is still in there and he's not completely broken from this.

So all in all, not a bad day. Again my idea of bad has shifted I guess because right now any day where there isn't a new symptom or pain is an okay day.

MRIs, CTs and LPs Oh My

Yesterday was another eventful day. 

Ollie wasn't any better, so he had an MRI to see if they could detect any blood clots or masses on his brain that could be lymphoma and might be causing the blindness.

Charity kindly came up and brought me Eucharist since I hadn't been to mass in weeks. Mario arrived to wait with me after attending mass and confirmation prep (at the insistence of Abby), while Abby was at a friend's for the afternoon. The MRI took twice as long as they said it would because they took extra images, but as Mario and I waited I was stressed thinking he had a seizure or stored breathing in there as he has been experiencing breathing issues and I was now starting to feel that many of his issues could be symptoms of seizures. Mario kept rubbing my back and telling me not too sad so much into the time and he was right. End result, more pics, but no more answers or evidence of what was causing everything that seemed unrelated to the lymphoma.

Last night Maria came up to keep me company since Mario went home to be with Abby. Ollie was having a tough night for pain and hallucinations caused by his pain medications. Maria jumped right in and rubbed Ollie' s feet (usually Mario's job) while I rubbed his head to help him through the pain. It is really emotional to do all of this and Maria is my kindred spirit in that she feels deeply and has incredible empathy too. She loves Ollie and so I knew it was hard for her, but she stayed and lovingly helped us until he was settled. Naturally in Maria fashion she also brought me enough delicious food to feed an army. I am so very blessed to have such generous and selfless friends.

Around 11 pm I noticed signs that Ollie had what I suspected was a seizure again. After when he started to talk his speech was slurred, his myth drooping on one side and his arm was heavy and weak. I was trying not to panic, but was certain he'd had a stroke.

Our ICU nurse Kim was incredible, seasoned and agreed with me that it was likely stroke or seizure and advocated for Ollie to get an emergency CT. They brought in a technician for it at midnight. We had an entourage of doctors and nurses with equipment, monitors, crash cart on their back, etc. and the technician was so kind. I thanked her profusely before and after for coming. Turns out the CT was clean so now an EEG is scheduled for tomorrow to look at possible seizures. 

In the meantime they found that his sodium was know, so started boosting those and his slurred speech and weakness stared to resolve themselves. Low sodium can also cause seizures.

Now I am completely convinced. There are many general symptoms or warning signs of a seizure. Here's what I've seen on Ollie that we all thought were random and unrelated until now::

• Staring

• Jerking movements of the arms and legs

• Stiffening of the body

• Breathing problems or stopping breathing

• Loss of bowel or bladder control

• Not responding to noise or words for brief periods

• Appearing confused or in distress

• Periods of rapid eye blinking and staring 

• Lips may become tinted blue 

• Breathing may not be normal. 

• After the seizure, may be sleepy or confused.

Today we had optomology, neurology, and acute pain services consults. Not bad for a Sunday when the hospital is quiet. Then all the docs had a meeting and our oncologists came to us with a modified plan. Having consulted more international experts, they were now recommending we go ahead this evening with another lumbar puncture to relieve the pressure on his brain and do the inter-thecal (injection into spinal fluid) chemo treatment again to be followed with another on Thursday.

Next it'll be full body radiation as opposed to just head and this would be done as part of bone marrow transplant prep at Sick Kids Hospital in Toronto. 

Lastly, it's donor stem cell transplant as opposed to using his own. That means Abby, Mario and I are his most likely matches. We talked to Abby and she did not hesitate to say she'd do anything to save her brother. I really hope she doesn't have to add that seems too much to put on her. I hope and suspect it's me. We're being tested tomorrow. If none of us are a match, we'll look to a match on the  international stem cell registry.

Prime candidates for donation are 17-35 year olds, though, so that means if it weren't for us being his parents, we couldn't donate. :-(

Tonight while sedated Ollie had his LP with chemo (they took off a LOT of extra fluid), an Optomology exam of the back of his eyes, an NG feeding tube inserted in his nose so we can start prepping him to eat real food and a catheter put in to better measure sodium in his urine. The procedures went well, but he was not happy about the last two.

Thanks to all week have reached out to help in new ways like shoveling snow, bringing things to hospital and belong us when we get to Toronto. We are so blessed to have your support.

Will update as we can. Hugs!

So many developments in so little time...

Ollie with his Dragon from his incredible school community, dropped off with hugs and a CHEO gift card for mom by his incredibly kind principal and her husband.

This is so hard to share, but so many of you are following along and checking in to see how we are or if we know what this is, yet. I do not in any way mean to add to your stress or pain, but need to tell the real story here, not the "beautiful family on social media" story because I am trying to raise awareness of lymphoma and what it is like to parent a critically ill child.

So much has happened here in last two days that this may be a really long one (apologies!).

I met with Ollie's oncologists at 4 pm Friday.  Mario was on his way to get Abby and I knew it was going to be bad news as they left a nurse with Ollie and took me into the back staff meeting room to talk. I called Mario and he said decide whatever I needed to without him and he'd call me when he and Abby were home safe as he we didn't want to have a difficult conversation while he was driving. Fortunately the Social Worker, Sherley was with me for support (another sign I'd need it since she was already there).

It turns out Ollie is sick because while it's acting like meningitis, it is actually being caused by lymphoma in his cerebral spinal fluid (spine and brain). So the scans that we got last week that showed that we were really killing lymphoma didn't show that jerk trying to take over my baby's brain. I wanted to scream, but I listened while tears flowed. Even the doctors haven't encountered this in their years at CHEO to-date. Great, we're atypical again! Why can't we just be normal and boring for once?! 

They feel immediate chemotherapy will fix his meningitis-like symptoms being caused by the lymphoma. They spent hours on the phone and reading case studies about just a few other kids around the world who had this happen, too. They also elaborated on the rest of the plan, that I'll share later on this post.

I remembered to ask a few questions, but mainly ones focused on his immediate needs for survival. I also asked them to answer any Mario would have on Monday and to help us tell Ollie next week about the new plan. We're not telling him everything right now as it is overwhelming for us to process. His anxiety is so high that we've decided we'll have to involve psychiatry (we already started working with psychology) to medicate him throughout this process so that his poor little mind is not constantly overwhelmed and in fight or flight mode. We have to get him through this mentally whole, too.

I am shattered right now. I know we can still beat this, but it sure feels like we can't catch a break.

When I finally got to tell my husband that evening, he also shattered. I have never seen him do that in 15 years together. My big brave teddy bear of a man who always tries to be so stoic. I can't share more of this incredibly personal time, but we did pick up each other's pieces and agree that lymphoma is not taking our son no matter what and that we have to stay positive and get him every resource possible to help him get through this.

So now they've injected his spine with more chemo today and we start our regular round 3 of chemotherapy tomorrow.  After chemo this week, the plan is radiation (laser) for his brain for about a week. 

The empty waiting room and Ollie was the only surgery on the board this afternoon. 

Radiation on a 7-year old's brain is a big thing. While not as dangerous as for a very small child, it can have lasting side effects like developmental delays or challenges. The doctors seemed confident that the risk for Ollie is necessary and the likelihood of any significant loss of any abilities is minimal. Either way it's not like there's a choice if we want him to live.

Plus after chemo and radiation he'll need a reverse bone marrow transplant where they remove some of his own bone marrow that is cancer free, save it and after more chemo, inject it back into him. This means going to Sick Kids Hospital in Toronto for up to a month. I really didn't want to have to tell Abby that, as she's been so sad about a separation of only 8 days so far! I know she and Mario can come to Toronto, but this is so unfair!

There have been a few more developments, though. Antibiotics stopped and better major pain meds have been put in place until the chemo starts to reduce the pain.  His sight has (temporarily we hope) been affected because the pressure on his brain from the extra cerebrospinal fluid on his brain is pressing against his ocular nerves, so he has gone from seeing double to seeing blurry to seeing black with light sometimes. Imagine having to deal with all of this pain AND all of a sudden experiencing blindness, too?! Optomology has now been called in and are looking into things. We have another exam in their clinic at the general tomorrow and likely another MRI after.

His heart rate and breathing have been experiencing intermittent drops over the last 48 hours, scaring the heck out of us. Last night a specialized team (the STOP team made up of experts from all specialty medicine areas) helped with his pain management. Mario stayed with Ollie last night and discovered playing music seems to help to regulate Ollie's heart rate and breathing. 

The tablet now plays music on low constantly.Ironically "King of Pain" by The Police is one of his favourites. 

The magic green button at the top now allows the release of extra pain killers as needed (maximum every 20 minutes).

It's scary to watch fluctuations in your child's vials and to see alarms go off, but sadly you start to get used to it.

This evening they moved him to the Intensive Care Unit (ICU) to give him better access to pain management and a dedicated nurse to watch his levels until things return to normal. 

Ollie in ICU

Hopefully in a day or two he'll be feeling better and be able to go back to 4 North to complete chemo this week. In the meantime it will start in ICU tomorrow. In the meantime the nurses are amazing, the parent facilities are newer here and there is comfort in knowing someone who is an expert is watching your baby all night.

The crazy thing about having a critically ill child is that when things go from bad to worse your idea of bad shifts. Two months ago on diagnosis day when they told me he might be sterile after chemo, I was so upset thinking he may never have a child of his own. Now I find myself thinking, if he was permanently blind, but lives he can still have a full life. Or he can adopt if he wants kids because he'll be alive! Just a few months ago I would have thought only blindness would be a very bad thing to happen to him. Incredible how  your perspective shifts so rapidly in all of this.

So that's where we are at. I've had so many big ugly cries over the last 24 hours that my eyes hurt and I feel like I have an emotional hangover. To top it all off, Abby now has a cold and Mario and I are masking up in case we've been exposed so we don't pass it on to Ollie or another sick kid. Honestly we just need a breakthrough. Anything will help. Ollie feels like God is not listening to us, Mario feels like he's being punished and Abby and I are just clinging to faith

. 

Please keep sending prayers and positivity. I wish I could stop asking you for help, but every time we take a step forward something pushes us back right now and we need to lean on you so we don't slide back further. Big hugs to all.

When the pressure is just too much...

If my update isn't as positive as usual, please forgive me, but I am feeling overwhelmed, scared and tired. I don't mean to upset anyone, but if you're at work, don't read this (Anne, I'm talking about you!). If you really want to, so it at home with a glass of wine or whatever your poison is to take the edge off.

Yesterday after 7 days of fever, terrible headaches and neck pain, diarrhea, nausea and doubled vision, they did a lumbar puncture (LP) on Ollie. Apparently the fluid basically surged out telling them there was major fluid pressure on his spine and head. A few preliminary tests showed cells in the fluid, giving them enough information to assume it is meningitis. They don't yet know if it's bacterial, viral or fungal. 

Meningitis is a rare infection of the membranes that cover the brain and spinal cord:(https://www.webmd.com/children/understanding-meningitis-basics)

So now they've started giving the antibiotics for the bacterial to Ollie, just in case. We're waiting for cultures to grow (or not) to confirm what type it really is. If it's viral there's nothing they can do but keep him comfortable and it should improve this weekend on day 10. If it's bacterial it should improve in the next 24 hours. If it's fungal (doesn't present that way, but is the most common in immuno compromised people like those undergoing chemo) we will have to give him another antibiotic. 

So as always the waiting is agonizing, like it was when we were undergoing tests for the lymphoma that they were certain was something else and kept saying was "atypical". 

Last night we had a few brutal hours (Mario thankfully was with me) when after a the LP Ollie's heart rate was low and his blood pressure was high. Nothing scarier than watching your child's heart rate tumble and having to scare him awake to make it go back up! Thankfully it regulated itself, but both Mario and I kept having to remind each other to breath, too. When he regulated, I went out to the car and just sat there screaming for a couple of minutes. When I was hoarse I went to a nearby grocery store to get stuff for him to take with a new med orally and a few groceries for myself. 

So they gave us two dedicated nurses last night to constantly watch his vitals on the monitor and physically. Two doctors also came in every 2-4 hours to administer neurological tests. He passed all, but they were concerned about one of his eyes that couldn't follow activity to the right. They felt it was likely short-term pressure on the ocular nerve. Let's hope.

Given the amazing nurses keeping watch, I was able to sleep a bit, but not well. We kept Ollie comfortable, giving him Gravol and morphine for the pain which was excruciating. He's also high anxiety now and kept panicking each time the pain came, so I did a lot of head and neck rubbing and breathing to try to reduce his stress. Going to the bathroom and getting him up was also stressful given it gave him a worse headache. Most importantly it's the concern about what this is doing to his brain after 8 days of trying to fight it. Who knew there would be something more stressful than your kid having cancer?!

Today they are doing an MRI to see what is happening in his brain and they decided to do another lumbar puncture  to rerouted the pressure on his brain, because after yesterday's he was lucid and chatty and hungry right after, so it clearly helped him. So I am waiting more. 

 Entrance to MRI

I bumped into friend Jamie who works at CHEO and she gave me the biggest hug and said she'd check on us later. While waiting I also went into the chapel/meditation room and prayed a lot and as I was by myself, had a big ugly cry and feel somewhat better. I couldn't take the pressure anymore either and needed to relieve my own. 

 The Chapel/Meditation/Quiet Room

He's out of the OR again and still in a lot of pain. We are giving him morphine for it for now, but that's worrisome, too because although it is a low dose, it can't be good to have kids on this stuff now than a few days. 

So more waiting and worrying. Still hoping and praying, too. Will update you as I can. 

In the meantime we're also worried about Abby who hasn't seen Ollie not I in 8 days now and although she has spent a lot of time with loving families who take great care of her while Mario comes to hospital, it's tough on her not to be home safe, not to know what's really going on here and just not to have her family together. It's also hard when she has big stuff going on that we can't attend like her heritage fair at school where we worked on.her project for weeks together. I've never missed things that were important to her at school in 8 years. A really big thanks to Mme. Clermont, Samar and Stephen for sending me pics and video chatting so she could show me everything virtually.

 Abby's Heritage project in French.

All in all, not feeling my usual glass half full self. I'll get back there, but really need a win soon to preserve our physical and mental health.

In case I don't say it enough to the many folks helping us, thanks so much for being part of our village. I wouldn't want to raise kids without any of you. Big hugs!

Scans and Results

Last week Ollie had a CT at CHEO and a PET Scan at the Ottawa Hospital's Cancer Centre. They were his second ones since diagnosis and were requested to see if the chemo is working.

Ollie waiting for the PET scan after being injected with the contrast.

Getting ready to do the scan. 

Way easier than the MRI that is super loud, but hard to be still in all of them.

Abby came along for the PET scan as she had a meeting with the social worker after.

Today we got the results and they were worth waiting for! Of the 5 original spots of lymphoma cells that they find, only 1 has small amounts of lymphoma cells that are active. Basically the chemo is totally working and blasting those cancer cells to smithereens! 

So we stay the course and complete the other 4 rounds (round 3 delayed until next Tuesday), knowing it's effective and that our brave warrior is winning the battle and hopefully on the end the whole war on lymphoma.

God is good, so thanks to all for your intentions for Ollie and keep them coming so we can win together! 

It's all in your head...

We've had a rough day. It started out with throwing up. Never a good way to start your day. Mario had taken the day to help and arrived shortly AV (after vomiting). 

All morning Ollie was restless and unhappy. Partly because he didn't get to go home again today and partly just because he felt rotten and is tired of feeling that way. He has been having intense pain in his head and that worried us and the doctors. We've been doing a lot of head rubbing and for massaging to try to help him.

Ollie endured a neurological test this morning (protesting loudly that it was stupid and these weren't even real medical tests!). Everything apparently seemed okay.

I met with Social Work this morning for my own peace of mind and later we all met with a psychology resident to talk about Ollie's anxiety. He has always been a sensitive and sometimes anxious kid, but lately it's really tough and understandably so. The really good and surprising news is that we are apparently killing this parent coaching/managing anxiety thing despite often feeling we aren't. The psychologist told us every strategy we are already using to calm him (gentle touch, one voice, white noise, telling him how powerful his brain and positive thinking are, etc.) are things they have to teach most parents to do when they start working with psychology. 

So I guess we are ahead of the game. I just wish it was a game we knew all of the rules to. Most of it is stuff that worked when they were babies and we didn't know what else to do. They are going to help us to teach Ollie to show us when he is feeling anxious before it escalates and help us to apply strategies to avoid the escalation versus the ones we are currently using simply to help him recover after he has already escalated. I did feel good after meeting with our mental health team. It can be scary to put everything out there about your parenting and have it judged.

At one point this afternoon the doctors told us they wanted a CT of his head to rule out a blood clot that can sometimes occur in chemotherapy patients. Ollie started getting worked up about this as it required another IV insertion (third this week) so that they could inject contrast into him. In order to calm him we had to give him Atavan (a sedative) and rock him while rubbing his head.

At this point he started mumbling his words like he couldn't form them and then couldn't suck water into a straw. We were very stressed. At this point the doctors wanted an immediate CT.

We got him calmed and onto a gurney where he promptly threw up all over himself. Changed him, bedding and gurney and we were on our way. Ladies in CT were incredible (as always) despite being short-staffed (Mario and I helped to move him from gurney to backboard). Then we lead aproned up and stayed with him.

A bit later after we were back in his room and settled, the doc confirmed that CT was clear, but said if fever is not gone tomorrow they'll call in infectious diseases to be sure they didn't miss anything. Worst case scenario Thursday he'll go for anorher lumbar puncture to rule out meningitis, but we hope he won't need it.

Tonight after much drama they managed to get a stool sample and will test that, too, so I am hopeful we'll finally get to the bottom of this. We hope to be home for at least a few days before starting round 3 of chemo next Tuesday.

The day wasn't all bad...we did get some news on last week's scans to check on the progress for his lymphoma, but I'll write that shortly in a separate post.

So I am just rubbing his head and trying to get him through this however we can for now.

Please keep praying that this illness passes for him quickly so he can stop being in pain and we can get home. 

Darkness, Anxiety and Morphine

This is Ollie lying in a dark room after begging us to take his nausea and headache away.

I am not trying to take horrible photos of my son's suffering, but in the interest of raising awareness of lymphoma and childhood cancer and their affects, I need to be truthful about what it's like for him and for us going through this. 

This is day 5 of fever, nausea, headache and diarrhea. Many of you are probably battling same at your house with your kid or another loved one. It always feels rotten to watch someone you love be ill. It's worse still when you don't know how strong they really are because they've been undergoing chemo for months. 

We are fortunate in that Ollie's red and white blood cell counts, neutrophils and platelets are looking good. We just don't know when the fever will finally break and allow us to see the proverbial light at the end of the tunnel. Plus our tunnel leads home for a few days and then brings us back here again next Tuesday to start our deferred round 3 of chemo. 

Thankfully Dr. Abbott (the head of Oncology/Hematology whom we hadn't seen since the day we were diagnosed) was on rotation this weekend and gave Ollie the choice to stay after his fever broke and start chemo as soon after as possible, or go home for a few days to rest and prepare mentally to tackle round 3. Ollie chose home and is anxious to get there. That can't happen into he has been fever free for at least 24 hours.

The occasional vomiting, diarrhea, and even nausea aren't so bad. It's the headaches that are brutal. I've always gotten terrible headaches and had migraines since I was 10. It seems my little warrior unfortunately takes after me in this way. He has begged for medication to get rid of his excruciating headaches and since chemo patients can only have Acetaminophen (Tylenol), but never Ibuprofen (Advil), pain relief options are limited. So we've had to resort to morphine a couple of times. Morphine always seems like some end of life palliative drug that is given, not something to ease a headache. 

Add to this the anxiety that Mario and I have...what if it's really lymphoma in there causing this? We know logically that his first scans and lumbar puncture showed that he did not have lymphoma cells in his blood or his cerebral spinal fluid (meaning not in his spine or his brain) and that his very first day of chemo treatment on November 28 (all lymphoma dates are now burned into my brain) they injected the chemo drugs into his spine as an insurance policy so it never gets in there or to his brain. We know these truths, but when you have too much time to think as I do watching him in hospital and Mario does when Abby goes to bed and the house is quiet, your brain struggles to accept the logic, always finding the fear easier to believe. Ollie had updated CT and PET scans last week, but we're still waiting on results to ease our minds.

So we wait and try to be patient, making him as comfortable as we can, trying to keep him from getting angry about being here so he doesn't waste what little energy he has fighting. Today he told me it was all my fault as I lay beside him, running his back and head trying to get him through a tough afternoon. Reluctantly as he felt calmer from my touch and patience he admitted it wasn't ALL my fault. LOL People say motherhood can be a thankless job and in this moment I was feeling it. A dear friend today told me he'll appreciate that we did everything to save his life...when he's 25. So there's that the look forward to! 😜

You also start becoming a hypochondriac yourself, washing hands constantly, hugging but not kissing him, no sharing of food and not breathing on him. Mario and I have worn masks here constantly so as not to expose him to anything else and not to get this virus ourselves and take it home. My stomach feels off today and my first thought was I caught it, but I feel fine otherwise, so am thinking it's likely just my anxiety around all of this. 

Don't get me wrong, we've got this, but it is tiring and we want this battle to be over so we can ready for the real one next week. 

I also miss Abby desperately and she is sad that we're not all home together. We video chat, but it's not the same as snuggling at home. 

Despite all of this, we are okay. Perspective is everything. I have been chatting online with Kelly, mom to #StartwithHillary (startwithhillary.ca) @StartwithHills who is a champion for stem cell donation and getting swabbed because her daughter has Aplastic Anemia and will likely need a stem cell transplant in the future. They have to worry daily about whether or not their daughter will have enough blood to live or need a life saving transfusion. They were exactly where we are now for 27 days when they first diagnosed her, so if she can do 27, we can do however many we have to to kick this bug and be ready to battle lymphoma next week. 

I promised her mama I'd tell dozens more people about Hillary to get more folks out to get swabbed. If you're between 17 and 35, please consider getting swabbed. It takes moments and you could save a life. It could be Hillary's or my son's if he needs a stem cell transplant later on if chemo doesn't cure him. It also becomes part of an international registry so you could save anyone really! Learn more at: https://www.blood.ca/en/stem-cells

Until the fever passes, we're here and making the best of it. Hope you are home with loved ones and virus free!

Literal Isolation

He's still at CHEO being a superhero infection fighter. No fever since this morning, although headache and nausea off and on.

We're now literally not just feeling isolated, but are actually in isolation, so no visitors or leaving the room for him until he's well. Naturally this time he brought Beyblades and hoped to make a new friend here to play with. 

Mario took the day off and let Abby sleep in (who indignantly protested when she woke up that she could NOT miss school...She's totally my daughter), then took her to school late and came to be with us for the rest of the day. Ollie slept a lot today.

Llama Llama Blue Pajamas slept today, too.

Dear friends had Abby after school, fed her dinner and took her out to Kanata for a special youth group activity and later brought her back. 

Ollie took the painful and expensive, yet magical G-CSF injection again tonight to try to boost his neutrophils, so here's hoping it works like last time. 

We're tired, but doing okay. We're in limbo about when we'll go home and even if there'll be chemo this week or if it will be delayed, as it all depends on his blood counts between now and Monday. 

Off to bed for me now. Your prayers and encouragement have been helpful today. Sweet dreams to all.

Wish there was an antivirus for all viruses!

It's after midnight as I write this and I should be sleeping, but I am too keyed up to sleep yet. 

This morning when Ollie woke he complained he felt sick and had a headache. I took his temperature and it was borderline fever at 37.8. So I waited a few minutes in between and took it a few more times and it did come down as he woke up a bit more. He decided he might need to have a bowel movement, which sometimes helps. He was a bit constipated (don't tell him I told you this!), but got a bit out and felt better. Temp was down to a normal range, too. He ate well and watched some tablet. 

When I peeked in at 11 am from the kitchen he had fallen asleep. This was unusual and made me worry a bit. Normally if he has a nap it's late afternoon after he's used up his abundant energy. 

So I let him sleep about an hour and a half, checking him regularly and feeling his head for fever. When he woke, his temp was normal, he was hungry and he was bouncing around full of energy as usual. 

Had a lovely visit from friend and fellow School Council member, Siobhan. I also took his temp randomly throughout the afternoon and it was fine. He and Abby had piano lessons when she got home from school and he seemed okay.

He was out of sorts after that and wanting to fight with me over a disappointment he felt I had caused him by not being able to get him something he wanted. I was annoyed and didn't take his criticism very well considering all I am doing to keep him alive daily.

Around dinner I felt his head and it felt warm again, so took his temp and sure enough it was 38.6. Waited a few minutes and took it again...38.4. Time to call the oncologist on call at CHEO. He was familiar with Ollie's case and recommended bringing him in because his neutrphils were low at only 0.5 on Tuesday, so his ability to fight infections was also low. 

Ollie was upset and tried to hide in his room. Abby was sad and trying to calm Ollie. I was stressed and trying to gather things as well as calm Ollie. I told Mario I needed him to come if Ollie was going to be difficult and asked him to call a friend to be with Abby (sadly she and I were supposed to go out for drinks tonight, so this was way less fun for both of us). He was stressed (although he would never admit it) and agitated so naturally could not find her phone number. I got mad and said just let me do everything then! Not our finest hour. 

Why do I share this unflattering story? Because it's real and this is really what having a critically ill child is like at times. We all stress and act in ways we wouldn't normally and sometimes forget to support each other, instead looking to make each other feel worse. Except Abby. She got full marks tonight for trying to make things better. Let the children lead you...

Jenn got called and was on her way to be with Abby. Abby got hugged and promised we would keep her updated. So off to CHEO we went. Fortunately, we've learned to get over disagreements fairly quickly in our family, so we focused on just taking care of him. 

After bypassing the line at CHEO (oncology patients have their privileges), they triaged us into the same isolation room in Emerg as last time - almost a month after last time, too. His fever was 38.7. 

Blood cultures were taken (there was crying), complete check up done and antibiotics were started right away. It was obvious that we were likely being admitted. So we waited. Ollie slept a bit, woke to be prodded some more, was upset and indignant when they shoved a swab up his nostrils to test for flu and respiratory viruses, then ate a banana popsicle.

A little while later another doctor confirmed that we were staying at least 48 hours and admissions came over with the paperwork.

We'd tried to prepare Ollie for this likelihood. We had prayed on the ride over that he wouldn't have to stay, but if he did, we asked for patience and grace to accept it calmly. Fortunately he did. I told him later how proud I was that he didn't freak out. 

We got a "luxury" room on 4 North again, so he was happy about that. Daddy went home to relieve poor Aunt Jenna who stayed with Abby until after midnight. We had a new nurse Ollie hadn't met yet, so he regaled her with details about Beyblades and what they can do. She listened intently while doing his vitals and promised to let him show her how they worked tomorrow. 

I finally got him settled down and now am ready for sleep myself. We're okay, but sad to be in before chemo was supposed to start again on Tuesday. I have no idea if they'll have us stay and maybe start chemo a day or two earlier than planned, send us home for a day or two only to come back or what. I'll share when we know.

Viruses suck. 

Friend-therapy

Had a lovely night out with some wonderful women who I am grateful to call friends. 

I will write more soon about our tests today.

Thanks to all for your friendship and love.

Recharging and Gearing Up Again

I have gotten messages from several of you, checking in to make sure I'm okay because I've been quiet over the last week or so. I am so very lucky to have so many wonderful friends and family who care about us and always appreciate the messages. I have been quiet because we had few commitments over the last week and we all needed recharging. 

Ollie chilling out with soup and How to Train Your Dragon.

Sometimes even a warrior needs a nap.

Lots of Beyblade battles happening with Mom, Dad and Abby. He always chooses the best Beys for himself! ;-)

Lest you think it's all fun and games, we were thrilled to have Mrs. Sherri (Cranston) start teaching him at our home on Monday. The two and a half hours sped by and he enjoyed his time spent with her. Sherri (who taught Ollie as a substitute for the last two months of school last year) said she believes that the universe brought her to us to help and we know that she was heaven sent. She'll be with us for five hours a week as long as we need her to help us ensure that Ollie is ready to rejoin his class in September in grade 3. We are also grateful to Team Ollie including Mrs. Philippe the principal and Mrs. Didiomete, his homeroom teacher who is helping us to keep him on track with his class. Mama is providing the French instruction for now so she can practice her French, too!

Abby needed a mental health day yesterday and found ways to relax. Self-care is important. Mama could learn from her!

 
We have also been gearing up for this week of CT and PET scans, blood tests, dressing changes and meetings with social workers and psychologists. We're also shining up our armour for next week to start round 3 of chemo next Tuesday the 21st.

The very patient VAT team who change his PICC dressing weekly with CHEO nurses and Daddy helping to keep him calm and still today.

Last weekend, Mario had help from dear friend Vic to finally put things right in the laundry area, while Jenn helped me to pack up Christmas and put it back in the attic.

Meanwhile, I have spent time doing a lot of reading and watching videos about childhood cancer and lymphoma lately. Lots of survivor stories, which I love and need as inspiration. Some days I feel like we've got this and we're killing it and other days I wonder if we'll ever get through it with our boy and our mental health intact. I'm going to share a few quotes that resonated with me below.  This research helps me to mentally prepare for what I don't yet know about this journey.

Today we stopped by Candlelighters to pick up some gifts including an IPad that Ollie gets to keep and a Kindle Reader that we gave to Abby. They have some terrific resources and are helping so much with little things that make a big difference like free monthly parking passes at CHEO (versus paying $14/day). We are so very glad that the Hatoums invited us to help with their Lemonade Stand for Cancer a few years ago and that we have helped a bit more each year to raise money for Candlelighters. It makes receiving support from them a little easier and we know we will pay it forward again when Ollie is well again.

So all in all a good week so far. Off to bed as the PET Scan at the Ottawa Cancer Centre (General Hospital) is super early tomorrow! 

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 From Living With Childhood Cancer: A Practical Guide to Help Families Cope:

"There is no advanced training program for cancer. Like that age-old nightmare, you’ve shown up for a final exam having never been to class or cracked the textbook, except this time your child’s life is on the line. Even life’s A+ students feel ill equipped to deal with the trauma of treatment and its long-term effects."

"At the beginning, his physical appearance was hard on everybody. I took pictures of Anthony, just as he was coming into the intense phase of treatment. My sister said not only did he physically look bad, but he looked so sad. My mother was upset, too. She asked how I could have taken them when he didn’t look good. But I couldn’t just put away my camera for three years. I couldn’t only take pictures of the other two. At first, when I looked at these pictures, I would think, my baby, look at what’s happened. But now, I find those pictures empowering, because we’ve come so far. —Lynn"

"Take pictures. This experience is a part of your child’s and your family’s life. You do not have to ever look at the photographs, but if you do not take them, you will never have that option. They may also help your child process the experience later."

"Learn the names and faces of the doctors and nurses, and call them by name. Help your child learn the names, also. We had a mom who sometimes asked for outrageous things, but when she would call out, “Hey, there’s Miss Susan, how are you, can you help us? Look T., it’s Miss Susan.” I’d just melt and do whatever she needed. —Susan Zappa, a pediatric oncology nurse"

"There is little that can be done about IV alarms going off during the night and nurses entering your room to change meds. As a mother, I appreciate nurses who make an effort to move quietly and carry a flashlight. I worship nurses who make note of when the IV will need changing and get there before the alarm rings. —Sonal"

 

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