The Rollercoaster Strikes Again

This is a long one, buckle up!

I've been reflecting this week about how this journey truly is a rollercoaster; there are no gentle slopes, just very sudden peaks and drops. Well, maybe the peaks are more gradual, but the drops are definitely not. 

We've had a very busy week! For May long weekend, the kids and I went to Penticton to celebrate my Great Aunt Joyce's 100th birthday! I hope to be in her condition at 3/4 her age; she is amazing! It was also great to catch up with relatives that we haven't seen in awhile. Eric really connected with his 3 year old cousin (4th cousin???) Emma.

Despite the kids faces, they really did have a good time. Of course, the highlight of the trip was the hotel swimming pool. The kids were in there 3x a day, for hours at a time. Emma loved the pool too, so we called it ool-pay when she was around and Eric is still saying ool-pay because he thinks it is so funny! 

On our trip, we made it to a playground and for ice cream, of course. It was such a great weekend. The boys had so much fun and were so full of energy! 

On Tuesday, Eric finished his 3rd round of treatment and he is tolerating it very well. On Friday, I spoke with his doctor to discuss a plan going forward. First, his doctor recommends that Eric do this treatment for a year; he started in January. Even though all the tests are showing no evidence of disease, the Doctor says that is really about the sensitivity of the tests. So the tests are showing 0 mutations in 10,000 cells for example, but they don't have the ability to look at 100,000 cells and maybe there would be a mutation there. The continued treatment gives the best potential to put this all behind us in the future. Hopefully. But there are no guarantees, and no predicting what might happen when the treatment stops. The doctor is suggesting this is the best possible course of action, but with the caveat that there is very little evidence in Eric's particular unique circumstances and he is extrapolating from the information they do have. Additionally, we need to keep a close eye on what is happening in his system so we can re-evaluate if necessary. Traditionally we have done that via bone marrow biopsies, but his doctor says it is not reasonable to biopsy him every month for a year. He has spoken with the lab and they believe that they can gather the same info from his peripheral blood. They are able to look for Eric's specific mutation in the blood and also analyze the chimerism (donor DNA versus Eric's DNA) in the peripheral blood. On Wednesday, May 29, Eric will have a bone marrow biopsy and they will also conduct the new peripheral blood tests to ensure they are giving the same results. This was a very positive conversation with Eric's doctor that left me feeling very optimistic. There are definitely a lot of unknowns, but Eric is doing so incredibly well, and so much better than we ever could have imagined when he relapsed, and we have a plan to try and keep him that way. 

Picked Eric up from school on Friday; he has his Freezie Friday freezie in the pouring rain; I explain the plan from his doctor (overview) and he's all good. Home and hanging out until 6ish when dinner is ready and Eric says "my throat hurts." And with that simple statement, I know we're going to be headed to the hospital. Eric ate a little pizza but not much of an appetite. Then he says he's really cold, really really cold, why is it so cold in the house - it isn't. So I check his temp and its 38.2 oral. At 38.5 orally, oncology considers it a true fever and we have to call the oncologist on call. At 7:30 I check his temp again and its 39.2 orally. I called the oncologist on call and she said to head into the ER at Children's. We were out the door before 8 and at the ER by 8:30. The one nice thing about being an oncology patient is they call ahead to the ER so they are expecting us and we don't have to wait in the gross waiting room. It was so busy Friday night. And now, things get even worse. They have to access Eric's port so they can do bloodwork, and start IV antibiotics. The ER is NOT GOOD at this. They wait so long that his Emla (numbing) cream has worn off, so it hurts to have the needle poked in, and they miss! Luckily, they stopped there and called someone down from T8 (the oncology floor) to do it since they have so much more experience with ports. Two nurses showed up, both of whom we know and I was so happy to see them. They get his port on the first try and start drawing blood, but they only get one vial and it stops, they can't get any more. They want to try a few "tricks" to see if they can get it flowing, but mostly it involves adjusting the needle within the port, which isn't so much taking it out, but sort of massaging and poking and prodding, which Eric finds way worse than the actual needle. So he's screaming in pain, and don't forget, he's got a fever and is feeling miserable. They still can't get any more blood, so they take out the needle and try again to access. More screaming and also crying and saying "mama." My poor baby; he usually sails through these port accesses, but this was awful. Anyhow, they still can't get any blood out, so they put heparin in to sit there and unclog the port, but after about 5 min they still can't get any blood out. So the doctor decided we should try another way because we need to get the bloodwork to find out if he is neutropenic and get treatment started; time is important here. She wants to do an IV so they can also deliver antibiotics that way, but Eric hates IVs because they pinch his hand, so I said no, they could get the lab to draw blood from his inner elbow and we'd worry about the antibiotics later. Meanwhile they also wanted a throat swab and nasal swab - more screaming. And the lab came to do the blood draw - no screaming. Finally, Eric could settle down to sleep for a bit; I think it was around midnight. 

His bloodwork came back and he is not neutropenic; in fact, his ANC (germ fighting white blood cells) are the highest I've seen them since all this started. Around 2am his nurse tried to get blood out of the port again, which is still accessed, and hooray! it is unclogged and she gets blood back. We don't need blood now, but she knows it is in the right place, so can start the IV antibiotics. I went out to the car to get Eric's stuffy and see the ER is still packed. Around 3:30 am, I find out they have recliners in the ER and you just have to ask for them. WHAT?!?! After all the night time hours I have spent in those uncomfortable chairs, now you tell me??? So I asked for a recliner. It arrived and was followed by the doctor who said that she'd talked to the oncologist on call and since he wasn't neutropenic, and we were able to get a dose of IV antibiotics in, she could send us home with a prescription for amoxicillin to start the following morning. (I didn't even get to use the recliner!) We left the hospital just before 4am and arrived home at 4:30. I think we were both sound asleep by 4:35. Eric woke up Saturday morning after a good sleep in with just a sore throat, no fever and no other complaints. By Saturday night, his throat doesn't even hurt anymore. Right now, Sunday mid-day, he is building a fort in the living room, as if nothing ever happened. 

His nose is a bit congested. The oncologist on call called this morning, she still doesn't have results of the strep test (throat swab) and isn't sure she will get them today. His nasal swab did show rhino/enterovirus - the common cold. She said as long as he's feeling well, he can go to school tomorrow. The rollercoaster dropped fast and furious Friday night, but seems to have levelled out for now, until next time. 

I also donated blood this weekend, so here's your reminder to book an appointment if you haven't done it in awhile. There are people in need of your donation.  https://www.blood.ca/en