Sept 29, 2020 - Updated 9:00pm

UPDATE:  Both procedures today went well.  The spinal tap looks good at first glance but they'll take a better look at it to be sure.  We've booked an echocardiogram for tomorrow (Wed) and Thursday is the PET and another CT scan.  
The bone marrow results are a big determining factor in how his treatment will start - but right now we anticipate the central line going in on Friday and then he'll be admitted and start treatment on Friday as well.  The first hospital stay is typically anywhere from 4-7 days.

Connor's blood pressure is back down to normal today - so perhaps even just having a diagnosis as opposed to "we don't know" is less worrying for him.  It was high at every appointment last week, so I was concerned.  

Connor has moved to "home instruction" which just means he can attend his virtual classes, but doesn't have to.  This way he has fewer due dates to worry about.  He can catch up when he's feeling better.   

I didn't take any pictures today - but am sharing this one from my Aunt Trish who is a teacher on Vancouver Island and ran with her kids today in the annual Terry Fox run.  For the American's following:   Terrance Stanley Fox CC OD was a Canadian athlete, humanitarian, and cancer research activist. In 1980, with one leg having been amputated due to cancer, he embarked on an east to west cross-Canada run to raise money and awareness for cancer research.  





Thank you everyone for your comments and for reaching out.  If I don't get back to each one, I'm getting them, I'm reading them and I so appreciate all of you!  It takes a village and I have the very best villagers!!

That's all I've got tonight - it's been a long day of sitting around doing nothing.  Note to self, I need to go fill my purse with snacks so that I have something to eat while I wait and Connor has something as soon as he's allowed to eat after fasting.  We didn't get home until 4 today - so was a long day for him with no food.



10:00am - Back at the Valerie Center this morning. First things first, Connor is still feeling pretty good. The incision is itchy but not painful. We've talked to the oncologist and the social workers and are hanging out waiting for his bone marrow withdrawal and spinal tap. After all the talking this morning and all the "no really, how are you Connor?" He's retreated to his phone, and just sharing stupid memes with me.  Back to a bit of normal. Hopefully they take him soon, he hasn't eaten yet and it's now 11:50am - hangry Connor will show up soon!! (If you know him at all breakfast is his favourite and he wants to eat the minute he gets up).

Onto the details: We still don't have a final diagnosis. Right now we are calling it B-Lymphablastic Lymphoma. Leukemia and Lymphoma actually have some some similarities and we were told to think of it as a spectrum, with each disease on either end and a sliding scale in between. If he has cancer in the bone marrow, over 25%, they'll classify it Leukemia, below they'll stick with Lymphoma.
(This is all going off my notes and my memory, if you know more than me feel free to comment)
The tests today will also determine the stage. It's past stage 1, so either 2,3 or 4, and that may change the aggressiveness of the treatment.
The good news: they expect treatment, including a minimal maintenance phase of perhaps monthly visits should be complete in 28 months. The first 10 months are the major treatment, then into a longer, less involved maintenance. They used the word cured. I know that with cancer they don't really use that term, and I'm sure there are chances for other things to happen, but this round, they expect him to be "cured" in 28 months. (Google was not my friend this weekend, so this is going to help me sleep tonight!)
We've signed up to participate in a study, so they'll take some extra samples today. It may help Connor in particular if it's leukemia, if not it will aid in research for others, something both of us support!
I've typed this quickly from my cell phone, so please excuse any typos or mistakes. I'll update more when he's home and comfortable.


Comments

  1. GillianSeptember 29, 2020 at 1:16 PM

    Thanks for the post and keeping us informed! It sounds like you are in very good hands with your medical team. I'm extremely pleased that social workers are involved, as this is hard on all of you. XOXO

    ReplyDelete
  2. KinlinFamilySeptember 29, 2020 at 1:46 PM

    I’m loving the word “cured”!! It does seem you have a great team helping you sort all this out. Deep breaths, happy thoughts. Sending you all lots of love! 💕K/C/M/L

    ReplyDelete
  3. BeataSeptember 29, 2020 at 4:04 PM

    I’m so impressed by your strength and resolve, and happy to hear that Connor is doing what kids do. And grateful that the doctors have presented a cure as the finish line. Love to all of you ❤️ B

    ReplyDelete
  4. Nana PenSeptember 29, 2020 at 10:06 PM

    What a team in Connor's corner! Wish we could be there for back up team play, but we are there in spirit as he tackles his first treatment challenge. We are praying for some good test results. Sending you all love❤

    ReplyDelete

Post a Comment

Popular posts from this blog

April 21

Connor was so happy to be in his own bed last night. The overnight hydration was generally without incident. Some beeping, but not enough to keep anyone, including Connor, awake. He's keeping his blood sugar under control, but not off the insulin yet. He's not eating much, the chemo is making him pretty nauseous this round. Likely because he doesn't have much else in him. Even the smoothie failed him this morning. Hoping to entice him with some food today, he gets his port de-accessed so he can go home and have the longest shower he wants, and grabbing an additional prescription for anti-nausea that he alternate with the zofran as needed. Such is the life of someone fighting cancer.
Read more

June 24

First of all Connor is no longer in pain, mouth is cleared up, weaning off the meds (slowly to avoid withdrawal). But Connor has lost all patience. He's still sweet and kind and trying so hard, but he's back to having two modes.... Sleeping or puking. GI was brought in today to discuss nausea and suggested abdominal breathing and getting up and moving. I don't disagree that more meds are not necessarily the answer, they so far seem to put him to sleep, but if he stands, he pukes. (Not even entirely sure the nausea and vomiting are connected, the vomiting happens very suddenly and very violently.) Hard to walk around if you are puking. He is positive for C diff, another infection, so another antibiotic that once again has nausea as a side effect. Honestly don't know what makes him sick. Meds? Pseudocyst? Chemo? All of the above? Doctors don't know either. I begged the staff to do more, that this isn't any quality of life.... Hopefully they find something.
Read more

Sept 28th - UPDATED 4:00pm

11:30am Heard quickly from the oncologist.  He is reaching out to the pathologist to get the final results to narrow down the diagnosis.  It will lead the way for the rest of the tests. He's going to call back with an appointment time for tomorrow so we can meet to coordinate and ask questions. I'll add more when I know more! 4:00PM - Spoke with Dr. Gregory (oncologist).  They still don't have a full diagnosis, they want to redo the blood work, because the low white blood cell count has some Leukemia indicators and that will change some of the treatments going forward.  In addition, tomorrow, they will be doing a Bone Marrow test and a Spinal Tap.  He will be asleep again, but just in the doctors office this time, not at the hospital.   At this appointment we'll have a chance to ask more questions, and connect with the staff social worker who can help us co-ordinate the doctors, insurance and help arrange a counselor to stay on top of his mental health! We also have ins
Read more