A New 'Normal"

Life has been busy. It has been almost 3 months since I posted. I guess no news is good news. So much has happened in these past three months. Christmas, Bash's one year anniversary of diagnosis, New Years, and more.

Lets start back in November. Sebastian had his broviac line removed! It was a fairly quick procedure, although we ended up waiting an extra hour or so in day surgery. It seriously wouldn't be normal for us if there weren't some sort of delay. Having the line out has been so awesome. Normal baths where we don't have to saran wrap him, no more weekly dressing changes on the line, no more line flushing or locking or worry that it would block, or that Bash would pull the line out. It has been a breath of fresh air to say the least. The only downside to not having the line is that our monthly check ups involve us going to the lab first for an arm poke to get blood-work. Sebastian has figured out very quickly what being in the lab means and his cry breaks my heart. He has figured out when I put on the 'freezy cream' (Ametop) on his arms to help numb his skin for the pokes, what is about to happen. He also started fighting the doctor and nurse exams - he knows whats up and wants no part of it, our cooperative little boy is now an independent toddler who wants his say and stands his ground very firmly.

December was then upon us in a flash. For Christmas we had plans for Nathan's family to visit. That all got thrown out the window when the flu took over. Flights were changed and/or cancelled, and visits were delayed. On top of that the weather turned very cold and all of the outdoor plans we had in mind to do had to be dropped as well. When family finally did arrive it was only for a few days and we stayed inside and kept warm. Even though our visit was short it was so lovely to have family here and to not have to travel anywhere - usually we are driving all over Saskatchewan to visit with family and friends. What a nice treat to stay put and have people come to us!

New Years Eve was a very emotional day for all of us. One year since Bash was diagnosed. As much as I wanted to forget this last year, the memories flooded in. Cancer robbed us many things this year. I was angry for a long time, am still angry, but it also taught me to be grateful, to cherish every moment, to love with all your being, to not sweat the small stuff, that family is everything. It showed us how strong we are, how much love surrounds us, what the important things in life are, and it taught me how to be humble. There were definitely a lot of tears, many cuddles and feelings of how unfair it has all been. Then there were memories of all the good things, the first crawl, first words, the first steps, Bash's ability to light up a room and send his visitors away with smiles, first birthdays, laughter - so much laughter. Through everything he has had to go through in this year he still managed to make those milestones, and show those around him what a fighter he is. To look at him is to love him, you would never know he was sick. For anyone who didn't see it, here is a link to the video I made for Bash's 1 year anniversary: https://youtu.be/YlHkgR4R1aA

January 7th was officially 6 months post transplant and Sebastian was finally allowed to be in public! Being able to take him to the supermarket or the mall was super weird at first and we have still been very cautious of germs and limiting his exposure to sick people as much as possible. He has been in a whole new world and is in awe of every new place we take him! His personality is really starting to shine. He loves being outside and has been very 'chatty' in the past few weeks. Won't be long before he's talking our ears off! He can finally have play dates and is still getting used to other little kids, he's not sure what to do with them haha! I also started back to work on the second week of January, and Sebastian started going to his new Day-home. There are a couple other kids his age and it is only a few minutes drive away from us which has been really convenient. He seems to have transitioned well with a few half days to ease him into it. Although he cries and clings so hard to me when I drop him off, he settles in quickly and has a lot of fun there. He has even come home with some crafts!

Being back to work has been strange but good. It was time we got back into a routine and made an attempt at being 'normal'. Although I miss being home with him a lot, he needs the socialization with kids his age and interactions with other people who aren't doctors and nurses. And I needed to get out of the house and be around adults, and have my sense of self back. I'm very lucky that my shifts are Monday to Friday and vary each week so that some days I'm off at 3pm and can still hang with Bash for a few hours before he goes to bed, and that my evening shifts start at 230pm so I get some mornings with him too. The hardest part has really only been trying to work his monthly appointments around our work schedules.

And on that note, Sebastian's has had a few extra appointments in the last month as his last blood work showed some questionable results. He had an extra bone marrow biopsy and lumbar puncture to make sure there is no cancer on Jan 12th, and so far everything is cancer free. His donor B-cells have been slowly and steadily dropping off though and are currently sitting at 74%. Normally when donor cells drop it starts with the T-cells and so far Bash has 100% T-cells. Because there is a drop in his B-cells and that is where his cancer started, his doctors are concerned that with his own cells trying to come back that the cancer could return. We had a meeting last Wednesday (Feb 7th) to talk about our options and it was decided to give Bash a boost of donor cells. We have enough blood from his bone marrow donor stored that we can give him two boosts if needed and still have enough remaining if we ever need it for a transplant - touch wood we never do. We had more blood work done that day too so we can see if the B-cells start to come up on their own. We are crossing all our fingers and our toes that those cells start to rise. Even if the cells increase it will probably not be enough and the doctors want to give him the boost no matter what. It will be sort of like a mini transplant. He will receive the donor blood just like a blood transfusion as he did with the transplant but at a 1/4 of the dose and with no chemotherapy or immune suppressants. This will give the donor blood full strength and Bash will be at a high risk for Graft vs. Host Disease again. If he shows any signs of GVHD we will treat it as it comes. A little bit would be a good thing as it would mean the graft is strong and the cells are doing what they need to.

We are very worried and have been on edge from these results. Hoping this boost is just the thing he needs and that it is as uneventful as possible. He will likely be admitted this Wed or Thurs (Feb 14th or 15th) or Feb 21st at the latest. It will be a day procedure as long as everything goes smoothly. Please send all your positive thoughts and prayers our way! Might take a month or two before we find out any results from the boost. We will keep everyone posted with anything we hear. Thanks for your continued support.

Love Terra, Nate and Bash.