We have some pretty good news for everyone.

PET Scan results came back this morning and was clear. They still can’t find any more cancer anywhere else.

As of 4:30pm Chemo treatment is going very well, no issues so far, there is approx 45 mins left of treatment.

Sue is also feeling pretty good mentally & physically so far today, pain is managed well.

They have been suggesting quite strongly we may get to go home this evening though we haven’t received any final word on that yet.

She will have to come back next week for the Spinal Tap appt.

They’ve set us up with most of the information that we need and contacts to call if there are any issues at home.

Quick 9:40pm update. We are home! Left Hosp 6:50, home just before 8.

There are no tests/scans scheduled for today, it is mostly a down day and we still await a bed in Hematology Ward. With that said, things are still progressing, they are adding a few additional drugs into the mix over the next few days to prepare her body for Chemo and battle royale against the tumor.

PET Scan results are not expected to be back until either this evening or sometime tomorrow. She said they generally take 1 to 2 days to be interpenetrated.

Will have a few visitors coming this afternoon but aside from that, not much else going on.

Sue had another shower this morning, feeling nice and clean and in a good mood. The adjustments to pain meds has really been helping these past few days. She says her pain level is regularly in the 1 – 3 range (on a 0 to 10 scale). Last night she even had a short time of pain 0 and had a good sleep.

Tomorrow morning sometime she is scheduled to have a spinal tap, as we understand this is the last of all the new tests before Chemo starts.

BTW, Sue does read all the comments that people post. Don’t think your comments get lost, even though you guys can only see them on each individual post, on our end we can see them all from a single view. We appreciate all the thoughts, love, prayers and support from everyone. 🙂

That’s about it for today, I’ll update if we get PET Scan results, otherwise, check back tomorrow!

Couple new updates at 5:00pm. We now have a bed in Hematology Ward. C7-403A (Building C, 7th floor). Sue has been moved there as of this time.

Spinal Tap is moved from tomorrow morning to Monday morning 9am.

Yesterday was a very busy day. Had a PICC line put in chest, an X-Ray, a MUGA Scan (heart) and an MRI (head).

Resident Doctor visited this morning and informed that both those scans (MUGA & MRI) came back clean & good.

Sue was pretty tired by the evening but they started her on some additional drugs as well as adjusting some dosages of others.

She was feeling pretty good and had a surprising amount of mobility, we even managed to squeeze in her first actual shower in over a month! She felt clean and happy about that.

We are still in Building B, 9th floor.

At time of last update (3pm) she has just gone in for her multi-hour PET Scan over at St. Joseph Hospital.

Furthering yesterday’s post. Sue now has a diagnosis of Non-Hodgkins Lymphoma. There are many kinds but the good news we received is that Sue’s is very common, there are numerous treatment options, and it’s even curable in a majority of cases.

She now has a dedicated doctor and a real plan in the works. She will not be getting surgery, they will be moving her from Trauma Ward in Building B over to a room in Building C, 7th floor (as soon as a bed is available there) and then once she’s there they will begin first round of Chemotherapy.

The Doctor said that Chemo is the most effective & efficient way to treat this and that she may only need Chemo.

They will be doing numerous additional scans/tests to rule out the possibility of anything anywhere else. But Doctor said even if they find more, the treatment is still the same so they will proceed as planned. Thus far the spine is the only place they have found anything.

The resident Doctor told us today that the type of Chemo she’s getting is one of the easier ones to tolerate and that they don’t intend to send her back to Woodstock Hospital but will keep her here and assess how she responds to the Chemo and she would be sent home afterwards to recover assuming she is responding well.

I’ll post another update once she’s moved to Building C7 or if we receive any further information.

For those who like to randomly visit Sue, just want you all to know she’ll be temporarily at St Jo Hospital all afternoon on Wednesday (from 2pm on) for PET Scan which takes a few hours. I’ll be there with her.

Thanks again everyone for all your amazing love & support! Sue’s gonna kick the shit out of this!

Didn’t want to leave everyone hanging. Today we received a whole bunch new information. I would say the information is “good news”.

The beginning of a real plan are finally being put in place and a lot of puzzle pieces came together. There’s some more tests to be done.

At this current point in time there will be no surgery, other more appropriate treatment measures are going to be used.

We aren’t prepared to share too much more information this evening but I promise we’ll give everyone more details sometime tomorrow. This evening were just updating all the immediate family and “processing” all this new information.

We appreciate all of your support and understanding, everyone has been so helpful.

Hope everyone is doing well. Straight to the point, still waiting.

Brief Doctor visit this morning told her they’re going to put a plan together Monday or Tuesday and will be able to figure things out.

For those of you partaking in superbowl festivities, enjoy! Sue’s waiting for the half time show – only part she cares about.

8:45pm Update: Sue enjoyed the half time show 😉

Good day to all of you. Starting to sound like a broken record over here but … still waiting on biopsy results.

Dr came to visit early this morning mainly to update on no results yet. And he also told her this wait time is pretty normal, often have to wait a week. Always good to know that after its already been close to a week 😉

Sorry we don’t have much else to tell you all but it’s starting to look like it’ll be a quiet weekend.

Tonight I’ll be going back to Woodstock to sleep and be back here in London around noon on Sunday.

Thanks so much to Cody & Brit for lending me their home for the past week, it was a huge huge help!

A Doctor visited Sue late this morning and informed her they still don’t have the biopsy results and that they have been sending requests to the biopsy analyst and haven’t heard back from them yet.

So, as yesterday was, we have no real updates to share with everyone, just more waiting.

They have also fed her lunch at 12.30pm and haven’t done any surgery prep on her, so nothing today.

I won’t bother to send our any text updates until we have some actual concrete information or progress to share (such as scan results).

In the meantime I’ve been doing some research based on the little information we currently have that I have been collecting here if anyone is interested.

Thanks so much for everyone’s support!

Dr visit this morning said biopsy results not back yet, most likely surgery on the weekend.

Still no word on bone scan and haven’t heard anything from family Doc.

It’ll probably be a pretty quiet day again today and tomorrow. More waiting, our favorite …

If you are interested, here you can read the story of how this tumor kind of came out of nowhere.

November 10th, 2019: The first sign of any issue and all that was was simply some light lower-back pain which Sue brushed off for a while as something she did during exercise that day. Pulled a muscle maybe.

December 18th: Over the course of the previous month this back pain gradually got worse, she started to get pain in her hips while walking, down IT Bands and around greater trochanter. On Dec 18th we got in to the family doctor her perscribed Cyclobenzaprine which is an anti-muscle spasm medication.

At some point between the 18th & 23rd we took Sue to the walk in clinicm, Cyclobenzaprine hadn’t helped one bit. By around this time, Advils had become part of her regular diet. They called it muscular-skeletal, or “mechanical” pain, but nontheless he ordered a back X-ray which was done in Woodstock a couple days after and was completely clear/no indication of problem at this time.

December 23rd: Went to ER for further increased hip pain. Recieved a cortisol shot in right hip which seemed to help quite a bit for around 24 hours and then it all came back. We’ve been told it probably helped because there’s a freezing agent with the cortisol shots that only lasts for about that long. No additional drugs we perscribed.

December 29th: Went to ER again, pretty much same deal, everyone is thinking this is “Sciatica” which we eventually learned through our own research is not an actual diagnosis, but rather a symptom of something. It just means she has Sciatic Nerve pain from some unknown source and it usually resolved on it’s own if you manage the pain and do a bit of phyio exercises. This time we were sent home with Naproxen (Aleve) however she also mentioned Gabapentin might be useful. The next day we got our own perscription for Gabapentin from getmaple.ca

December 31st: Was able to get in a rush/urgent visit to family Doctor office but saw a fill-in Doctor. The fill in bumped the Gabapentin from 300mg per day to 1800mg, also thought it was Sciatica, possibly “Piraformis Syndrome”, a muscular issue in the butt cheaks. He also ordered blood work & the MRI. MRI was scheduled for February 19th!! Through some luck and the magic of friends, she was able to get this bumped up to Jan 17th (thank God!)

Fill-in Doc also sent her to physio-therapy. Up until this date she’s been unable to stand without a ton of pain in hips and burning down fronts of both thighs, but generally she was able to lay on the couch all day just fine, muscles all around hip area were constantly sore and tender.

January 2nd: First day of physio, walked in thinking this is the first step to getting better, walked out barely able to walk from that day on. Was bed-ridden at home, could no longer sit without massive pain, or even lay on couch. Had to switch to laying on pefectly flat/supportive massage table with a few pillows.

Spent two weeks in that position, had some people come to the house to give massages, chiropractor, naturopath, streches, etc, etc. Nothing help and a couple of them commented Sue’s pain was very unusual for standard “Sciatica” and that all her waste area is very inflamed.

January 13th: Burning pain in legs increased substantially.

January 14th: Managed to get Sue to the Family Doctor’s appointment, did a bunch of Sciatica tests and still working under the assumption it’s Sciatic related, however, she admitted there is very little else she can do for her right now until we get the MRI results.

January 17th: MRI.

January 19th: Family Doc calls with the bad news of spinal tumor + fracture. Ambulance is called and being admitted immediately to Woodstock. All Doctors we have seen have been working under the assumption and telling us the entire time that they believe there must be another primary source that the tumor game from because tumor’s exclusively on spines are quite rare. The plan is to get her to London ASAP but do the full round of as many scans as possible while at Woodstock. X-ray, CT Scan, MRI & Bone Scan all done by Friday.

From here on out we will have daily updates at least til we get some treatment started. Maybe switch to every few days or weekly once we get to recovery phase.