Blessedly easy

Wow! A week has flown by and I haven't written anything! I missed it! 

Last Thursday Ollie had his surgery to remove the PICC (central) line. Everything went well, but it was surreal to be back there. This is where Ollie had his biopsy last November 11th (giving new meaning to Remembrance Day for us forever). Same exam room, same lovely and kind nurse, Bonnie (who could hardly believe it's been almost a year!), same anesthesiologist. Ollie took it all into stride and I was the one who had to do deep breathing to keep my (assumed) PTSD under control. 

They put Emla cream on each of his hands so that when he was asleep and they put the IV in it wouldn't hurt and his veins would be more open.

We were in a closed isolation room while waiting to go into surgery for "preventative isolation" since he's now post stem cell transplant. He actually slept for the last hour before surgery and refused the extra calming drugs before going into the OR since he told them he was already calm and sleepy. 

Surgery itself was quick and easy. Less than 20 minutes after a 2.5 hour wait to get in. Only little glitch was they called me into recovery when he was awake, but he was in the regular big common recovery room and I had to remind them that he was post transplant and preventative isolation, so they quickly moved him back to his isolation room. As was his usual practice, he immediately ate (he told me what to pack so we had our own food, although CHEO always allows you to order off their menu in recovery). Without the Dexamethasone now, waking up from surgery he is WAY more pleasant!

Within an hour of coming out of surgery, we went home and he ate some more. Easy peasy surgery. No post surgery pain meds needed, either. Within 48 hours he was great and excited to have his first relaxing bath in almost a year. He played with boats and didn't want to get out. A far cry from the regular crying and stressing every time where it took Mario and I to get him washed and out as quickly as possible. I've had so many showers assisting in my bathing suit this year!

Ollie got this cool new MP3-like device as well as a few other donations like a Braille watch and other assistive devices for visually impaired people from his Braille teacher, Leona. It allows him independently to listen to books and written documents read aloud to him. We're still learning with the IPad which is harder because it doesn't have raised buttons.

Chewbacca is clearly missing old Minou and is Ollie's regular hang out buddy now.

Friday night NERF war games happened and Ollie was thrilled!

On Sunday, unfortunately his eye was very swollen and red. Fortunately no fever, though. I called the oncologist on call to decide what to do. Thankfully our nurse practitioner, Terri was also on call this weekend and between the two, they decided that it could wait until the next morning when we were going in for bloodwork anyways. Ice packs on his eye and Tylenol kept the minor pain away until then. 

On Monday morning Ollie told me that he had prayed the night before to ask God to let him be able to take oral antibiotics at home instead of having to be admitted and IF he needed to be admitted he asked God to give him strength to handle it without freaking out. He continues to leave me in awe of his faith despite everything and shows me that God is working with him to get him through everything with his hope and faith intact.

God was listening and we got the oral meds! He also helped Ollie by giving him the strengthto easily get through the poke (needle) for his bloodwork with no fussing or crying at all. He took deep breaths all on his own, held my hand and Manon's (the amazing child life specialist in the Medical Day Unit) and told nurse Carrie just to do it quick. More easy peasy.

Yesterday we resumed physio with his amazing physiotherapist, Alison. I told her after that I was 100% convinced now that he relapsed in April before getting the stem cell transplant because he wasn't strong enough and through Divine intervention we came back home to get stronger to make attempt 2 successful and she had played a huge role in that. I know that he made it through transplant because he was physically, mentally, emotionally and spiritually stronger when we went back in July. 

Today Ollie learned to walk with his first blind cane thanks to assistance from Jennifer at Vision Loss Rehab (Leona works there too and they are incredible). He was super psyched as he knows this will make him more independent and prepares him to be able to have his Canadian National Institute for the Blind (CNIB) Buddy Dog. Speaking of which, Ollie was featured in their newsletter this month! 

Lesson one was all indoors. Next week we'll go outside and learn to use it on the street! Maja, if you're reading this, I'm thinking of you, missing you and so grateful for everything I've learned about blindness from you. 

So that's been our week (beyond melt downs about online schooling bumps). Today I found a heart in my morning bowl of Cheerios. Signs are everywhere and we are grateful for the love in our lives! Hope your week is going well (aside from the US debate last night)!

Landslide

Just when you think everything is finally going right, you hit another bump in the road...

Wednesday was a good day at home despite fatigue and a bit of pain. He had slept with Mario in the living room the night before as he was too weak to climb the stairs to bed.

At one point yesterday he wanted a bath, so I helped him get upstairs. It took a lot out of him, so he stayed up there through until this morning.

Ollie had a hard night last night with pain from mucusitus (canker sores in his throat from chemo) and hardly slept. So we dozed this morning for a bit. When we woke he seemed warm, so I took his temperature. It was a bit high at 37.4, but I waited 15 minutes and took it again. 37.8. Borderline fever. He wanted to go downstairs so we slowly made our way down them one at a time until we reached the sofa. There he practically collapsed again. Abby (who was home due to the teachers strike) kept an eye on him while I frantically started repacking suitcases for him and I, knowing if I took his temp again and it was over 38 we were back to CHEO. I had intended to do this yesterday just in case, but did other things like laundry, cleaning out the freezer and submitting an online EI claim instead. 

When I came down 15 minutes later and took it again it was 38.4. Back to CHEO. You don't give an oncology patient Tylenol as you don't want to mask the fever coming into Emergency. So I called and emailed his oncology coordinator to let her know we were coming in and to alert Emerg. Her response was simply, "Shit!", which I appreciated and at least it made me laugh when I was on the verge of tears. 

Then I left a message and sent an email to Mario, followed by a call to Stephen (and MF) to see if Abby could hang out with them today after all. Amazing friends that they are, they said they'd be over in 10 minutes to get her. Poor Abby is what we call a lolly-gagger. I snapped at her when she wasn't getting ready fast enough and she was stressed and mad at me when I left, despite my apology. It's so hard to balance it all especially in moments of great stress and I felt bad leaving her. 

Ollie was sad, but resolved. He knew what we had to do and accepted it. This was a far cry from our first infection where he had a complete melt down and ran away from me to his room. The only question he had this time was if he'd have to be in isolation again. I didn't have a real answer for him. 

I put our suitcases and a requested bag of Beyblades in the Jeep and ran back in to get Ollie. Slowly we made it to the car. Thank God for that because at 33 kg I couldn't carry him. 

On the way to CHEO I asked Ollie how he felt and he replied that he was sad. I told him I was, too, but we've got this and you'll soon be well again. Then the Dixie Chicks version of Stevie Nicks' "Landslide" stared playing on the radio.  Music is always emotional for me and has such power to make me respond to what I am feeling. Tears began running down my cheeks.  

Oh, mirror in the sky, what is love?
Can the child within my heart rise above?
Can I sail through the changing ocean tides?
Can I handle the seasons of my life?

Normally I sing and it lifts me up. Today I couldn't. It was all I could do to control my tears so I could drive and not sob loudly as I didn't want Ollie to hear and feel depressed, too.

Now logically I know this is likely to be a short lived infection and visit. But I'm experiencing a bit of post traumatic stress disorder (PTSD) now as 49 days ago we were exactly here thinking same and stayed 47 days while my son had lymphoma in his cerebral spinal fluid, was very sick and became blind. So now I'm stressed thinking we're gong to have worse happen and he'll miss his stem cell transplant. 

So I unwound myself, took deep breaths and focused on just getting to CHEO and into Emerg. 

Fortunately Ollie and I are both getting more practical about accepting our situation. Ollie didn't even fight or cry when they came to take blood cultures. It used to take 3 of us to hold him down for that. I used to say, let's wait to eat until we get to our room. Now I know it's likely 3-4 hours of waiting and we need to eat so we ordered from Tray Services and ate what we could. 

Ollie had had nosebleeds last night and this morning and a pretty major one in Emerg. The size of the clots were incredible and clogging his nose so much he was losing his mind trying to blow them out while the nurse and I tried to keep him from blowing. Finally using nose pinchers (that he hated) we got it stopped. The doctor confirmed that the bloodwork shows that he is now neutropenic (level 0 meaning no ability to fight infection) and platelets were only 8. Platelets were ordered to be sent up to our room.

Mario arrived (I told him to finish up work as there was little point in all of us waiting for something to happen) with McDonald's requested by Ollie, but in the end his mouth hurt too much to eat it.

When we got into our room (Room 2 which we've never had so I guess we needed to come back!😜), all of the nurses and Dr. Ali waved us in with sympathy, telling us they'd missed us, but were sorry to see us again and knew we wouldn't be here for long.

The platelets transfusion began (thank you anonymous kind donor) and Ollie promptly fell asleep, so I left the boys to bring in our suitcases, go down to admissions to get my pass and to pop out to Walmart to get Melatonin Gummies (the ones here are mint and what kid likes mint?!), a few snacks to feed my warrior when he wakes hungry in the night (Tray services is closed from 7 pm to 8 am!) and a new toy to reward his bravery and determination in accepting this latest setback with grace. Yes, I'm buying happiness here, but at the moment we need to get it however we can! I keep teasing that I'll beat the greedy brat out of him later when he is well.

Mario left to get Abby at about 7:30. I got us all settled again in our latest home away from home. Saw a few parents here who were surprised to see us again and sympathetic.

Now he's snoring away and I'm about to as well. 

So the clock has reset to Day 1 of admission. Praying that it's like our pre-Christmas visit and only 3-4 days as we need to get this boy well enough to get to Toronto for our consult and his transplant. Thanks for your continuing faith in our strength to get through all of this. 

The Bumpy Road to Diagnosis

In August 2019 we were just your average family enjoying a warm and busy summer. One day early in August, Abby pointed out what appeared to be a round sunburn on Ollie's neck where his shoulder met his neck. We assumed that was exactly what it was, so when it appeared to become an oozing boil we took him to the pediatric clinic. The pediatrician said it was a bacterial infection (not a sunburn at all) and that it happens because we all have little bugs that live on our skin and sometimes we have a reaction. Off we went with a round of antibiotics and his suggestion to see our own pediatrician in about 10 days time for a follow-up.

So he took the antibiotics, the sore closed up and the bump appeared to reduce to a small skin-coloured bump. By the time we were able to see our own pediatrician due to vacations and such it was early September.  By then the bump had grown and had started to turn red again. Ollie's pediatrician indicated that he needed a surgical consult at the Children's Hospital of Eastern Ontario (CHEO), but was unable to determine who to refer us to immediately. In the meantime, we saw a family friend who is a naturopathic doctor to get her opinion and see if there was anything else it might be or anything else we might do to get rid of it. She identified that there was also another bump in his neck that was likely an enlarged lymph node. She advised us to seek an ear, nose and throat (ENT) surgical consult with CHEO and not to wait, but to call or email them to figure out how to get this referral soon.

I emailed CHEO and got details on how to get our pediatrician to get them the referral, then called our pediatrician's office who promptly sent the referral. Within two days we had heard back from CHEO and within 4 days of sending the referral we had an appointment in their ENT surgical clinic. They took it seriously from the start. On October 22, 2019 we had our first meeting with the head of ENT. She and another doctor felt if it was a cyst it was atypical and thought it might be Tuberculosis or a relative of TB because it appeared to be infected. They decided to order a bunch of tests and thus began a whirlwind month of tests where poor Ollie was poked and prodded every few days.

Ultrasound identified a mass and the technician and the radiologist asked if we had cats, which we do. They suspected cat scratch disease. The blood tests we had next revealed that it was not cat scratch, lyme disease, malaria or any other number of possible infectious diseases. It did reveal that Ollie had somehow had mononucleosis at some point, which apparently is more common than we imagined and had depressed his immune system. The TB test was negative, but apparently that didn't rule out other possible relatives of TB. Next we had x-rays and then an MRI with dye injected. Many tests caused anxiety for poor Ollie who hates needles in particular. Throughout it all the staff at CHEO were incredible and I was so very grateful for their patience and kindness despite Ollie's fear making their jobs more difficult.

The bump had become like an entity itself and had been comically named "Sir Skateboard" by Ollie. Given I was in full-time french training during this time for work, I found it ironic that the word bump in french is "la bosse" because it really did appear to be the boss...controlling all of us and our future.

After all this we still didn't know any more, so on November 11th instead of attending the kids' Remembrance Day Ceremony at school as usual, we were at CHEO for the biopsy of Ollie's bump. The biopsy went well and during the two minutes of silence for Remembrance Day we were in hearing from the surgeon about his findings. Although they had all suspected it was infected, there was no infection and only mass. We were told we would have results within two weeks. Thus began the agonizing waiting.

During this time I got access to Ollie's MyChart online and was able to see the reports. The Ultrasound and MRI mentioned a "slight" chance of t cell cutaneous lymphoma so I began to research that and then pray harder that it wasn't that and I was just being paranoid in thinking it fit.

On November 18 we had his post-op to check the incision, but there were no results, so we assumed that we'd hear back later in the week. By the time we got home CHEO had called and asked us to be back at 7:30 the next morning to meet with the doctor before her 7:45 surgery. She suggested Ollie wait in the vacant waiting room with his tablet and the receptionist as we talked and I knew that was not a good sign. She was very kind when she told us that it was absolutely lymphoma and suspected to be something called Anaplastic Large Cell Lymphoma (ALCL) although they were still waiting on the specific pathology reports to confirm it. She apologized profusely that she could only arrange last minute for us to see the oncologist two hours later that day (without an actual appointment so she had obviously called in a favour and when we later arrived at oncology the receptionist wasn't even aware as the doctor had arranged it directly).

So we went to the cafeteria and I pushed food around my plate as Ollie watched his tablet and Mario and I started puzzling out what we would need to do and what this would mean. We knew that no matter what he was going to get through this and failure was not an option.

This post is longer and more detailed than I intended, but so may people have asked how we got here and in the words of Mark Twain, I didn't have time to write something shorter.