medullomama

[medullomama]

March 27th, 2025

Fever was definitely caused by the G-CSF shots.

Shots were resumed with ibuprofen given twice daily and no more fevers.

Plans for the stem cell harvest were put back into place and we were released from the hospital.

March 28th, 2025

Z has begun to eat so much more by mouth. With the tube feeds he's definitely started to hit around 1000 calories daily.

[medullomama]

March 26th, 2025

No stem cell harvest this cycle. His bone narrow isn't recovering at the rate it needs to be for collection.

G-csf shots are also being stopped, the latest theory on the ongoing fever is that it's caused by the shots putting strain on his body causing an inflammatory response.

Hopefully the fever goes away now and we can go home for a few days before his next cycle will start.

[medullomama]

Eating some Mac and cheese today!!!

[medullomama]

His fever just will not break.

Still hovering around 39°C even after Tylenol, and now he's just super tired but we don't know if it's from all the playing he did this morning or is it the fever since he was also around 39° when he was feeling totally fine.

Hopefully it doesn't interfere with the stem cell harvest.

[medullomama]

Z ate 5 bites of a chocolate chip cookie.

It's the first time he's eaten with his mouth in over a month.

I cried.

[medullomama]

March 24th, 2025

Z spiked a fever again last night, so no discharge still.

He's clearly feeling a lot better though, he's up and talking to everyone and wanting to play and do the things he likes. He's tolerating the tube feeds really well and hasn't thrown up in a couple days now.

No one can understand why he keeps spiking a fever, so we are here for the foreseeable future it seems.

Stem cell collection still planned for Wednesday as far as I know.

[medullomama]

The night nurse that wants to give Z meds by his NG tube needs to stop.

I do all his NG care, I know how he likes things done in relation to it. Even putting meds in needs to be done a certain way so he doesn't feel like he's choking on it.

The nurse pushed a whole syringe of air into his tube quite forcefully, this is a big no for him and causes massive nausea. He woke up from a very peaceful sleep screaming because it hurt. Then she pushed his meds too fast.

He had to sit up for like 20 minutes before he could go back to sleep. He burped violently 3 times, almost vomiting with each burp because of the air forced into his tummy.

I wish the nurses would look at his chart better and see that even through the night I will do anything related to the NG.

Just because other parents rely so heavily on the nurses to do everything for them doesn't mean we're all that way.

[medullomama]

March 23rd, 2025

No discharge today.

Z spiked a fever last night, only 1 high temperature, it came down within an hour, but still that's enough to keep us here longer.

Unless by some miracle the doctors choose to treat it as a weird one off we'll be here at least 2 more days.

[medullomama]

March 22nd, 2025

Still getting over the virus, no fever for over 48 hours but the congestion is still really bad and of course he doesn't want to blow his nose properly with the NG tube in. One of our nurses set up a humidifier, hoping it'll help.

I have caught the virus Z has too, so I'm not feeling great either.

Neutrophil count still at 0, but white cell count has more than doubled since yesterday.

Discharge tentatively scheduled for tomorrow.

Stem cell harvest tentatively scheduled for the 26th.

[medullomama]

March 17th, 2025

Readmitted to hospital due to prolonged vomiting, inability to keep tube feeds down, dehydration, lethargy, and fever.

Started ondansetron to help with nausea and vomiting.

March 18, 2025

Low volume trial tube feeds go well, no vomiting and minimal nausea.

Fever spiked to 39°C overnight, but came down with Tylenol. Mucusy cough persistent.

Z hardly slept due to coughing so much.

March 19th, 2025

Nasal swab showed Rhinovirus, no antibiotics needed, just fluids and rest.

No fever, cough not as mucusy or often. He's still very tired, but is getting better.

Hopefully we'll be out in a few days before his stem cell harvest.

[medullomama]

March 7th, 2025

My sister took M to her house for 4 days so both husband and I could be at the hospital all day for Z's infusion days.

March 7th-11th, 2025

Infusions goes as expected, nausea and vomiting are his main side effects, but he was still keeping the tube feeds down mostly.

Still not eating by mouth, but holding a pretty stable weight.

March 15th, 2025

GCSF injections daily started in order for stem cell collection.

Discharged with home care set up to continue daily injections and follow up clinic visit on the 17th.

[medullomama]

February 22nd, 2025

M's 7th birthday, we had cake while in hospital still.

February 23rd, 2025

We were discharged, with home care set up to continue the IV vancomycin.

February 24th, 2025

Z threw up so hard his NG tube came out.

February 25th, 2025

Scheduled clinic visit for blood work and to reinsert the NG tube, ended up being readmitted due to fever.

All swabs and cultures came back negative.

February 28th, 2025

Z's hair started to fall out, it was all gone within 48 hours.

March 3rd, 2025

Finished the course of vancomycin, discharged with plans to start the 2nd cycle on the 7th.

[medullomama]

February 6th, 2025

Double lumen CVL inserted, went as expected, no complications. Out patient surgery, same day discharge.

February 13th, 2025

Chemo cycle 1, day 1.

Z was feeling good, his stitches were healing well, my sister came to stay with us to look after M for a few days without her having to come to the hospital all day.

February 17th, 2025

Last day of chemo delayed due to persistent fever and changes in the pseudomeningocele under his craniotomy site.

Neurosurgery tapped it to send the fluid for testing. Infectious disease came to meet with us to get some more history, especially as we had been living in North Africa for an extended period.

February 20th, 2025

It was determined that Z had a staph infection in his CSF, he had been started on vancomycin on the 17th and it was found to be the antibiotic that would work best against his infection so it was to be continued for 2 weeks.

Z also got his first NG tube inserted on this day after 5 days of not eating or drinking anything other than water.

[medullomama]

January 19th, 2025

After his repeat MRI it was found that the entire tumor was resected. There no perceivable tumor cells left.

The tumor itself was sent for genetic testing to determine what type of tumor it was, though they strongly expected it to come back as a medulloblastoma.

January 20th-29th, 2025

Z continued his recovery post surgery in hospital.

He received physio, occupational, and speech therapy while in hospital.

He did not lose any speech, and upon discharge it was determined that he did not require a rehab stay or any additional therapy, exceeding everyone's expectations of him.

The shunt that was placed during his surgery was removed on the 23rd, it was not draining anything and the pressure in his brain measured normal with it clamped for 24 hours, showing that his CSF was not pooling and was flowing the way it should.

We met with the Oncology team, it was a medulloblastoma subtype sonic hedgehog. He would need 3 cycles of low dose chemotherapy and 1 high dose cycle with a self directed stem cell transplant afterwards. Radiation was not considered because of his age, 3, and the fact his brain is still developing at a rapid pace.

We got discharged from the Neurosurgery ward on the 29th.

[medullomama]

January 18th, 2025

Z went in for craniotomy and C1 laminectomy around 9am.

His surgery was 9 hours long.

His surgeon was very happy with the results, but we wouldn't know if any tumor was left until a repeat MRI the next day.

Z woke up from surgery very well, he was moving all his limbs, speaking eventhough his face was all swollen, and could recognize us. His neurological exams were great.

He spent 1 night in the CCU until his MRI the following day.

[medullomama]

January 16th, 2025

We arrived at SickKids hospital, I had been in contact with the International Patient Program so the hospital knew we were coming and were prepared to admit us almost right away upon arrival.

January 17th, 2025

Z had his first MRI so the surgeons could have a better idea of what they were dealing with.

His tumor measured 4cm. He had a 50% chance of losing his speech based on where the tumor was placed. He also had a big chance of needing to be admitted to an inpatient rehabilitation center upon recovery from surgery for physio and occupational therapy.

[medullomama]

January 5th, 2025

We traveled 3 hours from Tebessa to Annaba, the closest hospital with Neurosurgery capabilities.

Spent 48 hours in a crowded room in emergency before husband and BIL finally got the doctor on the ward to accept Z for surgery.

January 7th, 2025

Z had ETV surgery. A channel was created around the tumor to allow the CSF to flow into the membranes without pooling and putting pressure on the brain.

This was needed in order for it to be safe for us to fly back to Canada to get the tumor treated and tested.

January 15th, 2025

After 2 days recovering in hospital we were released and continued recovery in a hotel for another week.

On the 15th we flew out of Algeria, back to Canada landing in Montreal in the mid afternoon.