Day 30

Today was a rough day for our little warrior. He was NPO (nothing by mouth) from 6am for his Intrathecal Methotrexate (chemo drug given in the spinal fluid). He wasn't allowed to eat after 6am and its so hard on him as he doesn't understand why I wont feed him. Luckily his injection was earlier than the last time and we got into the operating room around 1030am. He was so upset and not himself today. Normally he has been fussy before this med, but still gives smiles to everyone - today he just cried. I wish I could read his mind, or that he could tell me if he has pain or is feeling ill. Its hard having to guess all the time and giving him Tylenol or Gravol if he doesn't need it. I wonder also if he is having withdrawal from the steroid medication he finished on Saturday or if there is something else going on.

I got to go into the OR room with him until they put him to sleep and then Nate and I hung out in the waiting area for about 45mins. After he woke up they brought me into the recovery room and I got to feed him right away and he settled down. Back in his room he received two more chemo meds (Vincristine, and Asparaginase). Both are harsher meds that he doesn't get everyday so having all three today sucked for him. The doctors also decided to give him IVIG today to help boost his immune system - or give it the kick it needs to restart.

He has 6 more days of the Induction Phase of treatments and then they will do another bone marrow aspirate to see how his body has responded to the chemo. There is talk about us being discharged for a couple days before his next round of chemo starts - just not sure on the plan or dates yet. The bone marrow biopsy day also falls on a Saturday so I want to find out tomorrow during rounds if they will do it a day early or wait until Monday.

I'm hoping he gets a good sleep tonight as he was so tired after today and all the proding they did to him - people just kept coming in the room and he really needs some good rest. Oh yeah - forgot to mention he started feeding himself from food on his tray today! I'm so proud of him.

Week Four

Four weeks already. It has flown by but also feels like forever. I have different emotions everyday ranging from happy he's doing so great, worried about whats to come and when he will hit a speed bump, angry that this is happening to him, frustrated, teary, numb - you name it. I'm glad it seems to be going by fast, but I hate to race through this, as I feel I'm missing him being a normal baby going through all his milestones.  

Jan. 22 - Day 23 for us. 
Pass home yet again! Bash had a really great day! We had fun playing with all the new Snap Chat funny face filters and just enjoyed each others company.  We also made it through the weekend with no fever! The doctors were sure he would catch something by now.
                                                
Day 24.
Monday. Our primary nurse stopped by the room and gave us a "road map" of our journey ahead. This shows us the next 61 weeks of treatments (best case scenario) - if there are no hurtles we have to jump over along the way. It's really daunting, that's like a year and a half! But it gives us an idea of what we can expect in the coming weeks so we can try to plan our life a bit better. The 'map' shows us when we will be in-patient and out-patient (there are a lot of in-patient it seems). Then the out-patient days we will mostly be in 'clinic' to start out - this means driving to the hospital Monday-Friday and spending most of our day in the hospital Oncology Out-patient clinic. This has got me thinking we should probably relocate ourselves closer to the hospital to make it an easier commute. Our nurse tells us some of his treatment can be done at home and they will send a nurse to come to us those days. 

We get the all clear from doctors to come off isolation today! No more gown and masks, and we can visit the sunshine room (play room on the unit)! The doctors mention during rounds that they're impressed he hasn't had a fever yet and been put on antibiotics by now. They assumed this would happen on the weekend like I mentioned, but Bash remains unfazed by the treatments and is still acting like a happy little monkey. He tried a fudgsicle for the first time today and loved it!

Day 25.
Another good night of sleeps and not too many meds today so day pass! We spend more time at home than the hospital lately which is really nice for all of us. His platelets are a bit low so he has a platelet infusion to bring them up. Grandpa and grandma watched him while Nate and I go out and run some errands (car wash, groceries, Starbucks, and oil change) It feels super odd to do normal life things, especially without Sebastian in tow. 

Day 26.
Another day pass home! He's still doing so well. I went to rounds with all the doctors and was only gone 5 minutes. They said he's doing great, nothing new to report or change. Keep it up buddy! We had a dressing change on his Broviac site and it was pretty painful this time because it was so stuck to his skin. The nurse also cut the sutures holding the line in place as it was healing nicely and they aren't needed anymore. We head back to the hospital just after 7pm as usual to get his meds before bedtime. 

Day 27.
Grandpa and grandma K are going home this afternoon. They are so sad to leave, but want to give us some space at home, and need to get things done back in Saskatoon. They rushed out here and hastily packed things up when this all started. All 5 of us went to the sunshine room where the music therapist sang songs today for everyone and let Bash play with lots of different instruments. His favourite so far is the guitar. In the morning he had the Asparaginase shot in his leg and hardly flinched! He gets more upset when he smells the alcohol wipes they use to clean the injection site haha. Around 2pm we say our goodbyes to grandma and grandpa. Lots of tears and hugs, they're going to miss him so much, but promise to be back soon. The nurse had trouble drawing blood from one of his lines and put in TPA fluid to bust the clot out and hopefully get better flow from it. All day he ate so much! A whole pack of food for breakfast, plus eggs, and for lunch he has some muffin, another pack of food, and 100ml's of a protein shake for a snack.  

Day 28.
Day pass today. Finish up meds and checks at the hospital and get home around noon. First day without grandparents around. The house is so quiet and lonely. It's strange coming home from the hospital without a delicious meal prepared by grandma, and grandpa waiting at the door to snatch you out of the car seat. We play with toys, eat and eat, nap, then eat some more! We FaceTime with grandparents and uncle Scott and Sharisse  before getting ready to head back to the hospital.

Day 29.
Saturday -Pass - Earliest one we have had so far!  We leave the hospital at 1030am. Nate makes us breakfast and then we all have naps and hang times. Today is his last day of steroids for the 'Induction' (or first phase of treatments). We are curious to see if his appetite decreases as this is what has been driving his insatiable hunger. He is also very moody today, another side effect, and I hope this gets better too. At one moment today he was laugh/whining/crying at the same time haha - thats the best way I can describe it.

A Day in the Life of Bash

My mom recently asked me for an overview of our day and I thought I would share it with everyone. 

Sebastian is almost always up by 8am. Our nurse brings in his morning medications around 830am and does checks on the room equipment and then takes his blood pressure and other vital signs. Bash eats a ton of food right now because the steroids he is taking make him very hungry, so breakfast usually takes at least an hour or more from 9-1030am! Nate gets here around 1030am and if I haven't already, I get dressed, then go to rounds around 11am. Sometimes Bash naps around 1030-11am depending on his medication schedule that day, and if lots of people are in and out of the room. We have a 'baby sleeping' sign on the door for naps but not everyone reads it, can read, or cares I guess lol, and he gets waken up a lot. Lunch is at noonish - 1pm. Chemo medications during lunch hour usually. Lately we get a pass (like everyday!) and can leave by 1-2pm. Yesterday they needed to put a med in his line as it wasn't working well and they thought there was a clot there. So we didn't get to go home. Dinner is around 530pm after Bash's afternoon nap. If at home we pack up after dinner and head back to the hospital around 730pm. Our nurse brings night meds in and does bedtime checks and vital signs again. I try to get him into bed by 830 - 9pm. Nate leaves around 930pm, then I send out my daily update to everyone and go to bed too. Depending on the night nurse we may get awakened a few times or left alone. He gets blood work drawn at 4am every morning and I try to time it so when he wakes up I can call the nurse in and not wake him. He is seriously the lightest sleeper ever and wakes to any sound. The nurses think they can sneak a temperature or blood pressure on him but he basically wakes up if they just peek over the crib rail at him lol. (I have a sound machine running at night to help drown out the noises too). Bash sleeps an average of 3hrs before he needs to nurse or be changed. Then it all starts over again the next day. 

I definitely appreciate the night nurse quiet skills now (I'm seriously the worst night nurse ever - I try to be super ninja quiet, but I always drop something or I trip on IV poles). Living in the hospital gives you a whole new perspective of everything, and I feel everyone who works here should spend a night or two just to know whats its like on the other side of things. I never thought I would have to live in a hospital, let alone the one I work at, and I'm looking forward to eventually sleeping in my own bed and having Sebastian at home where he belongs. 

Week Three

Alright, I think I am getting close to having everyone caught up.  I'm going to again post our notes and updates we sent out to friends and family and try to keep it short...ha!

Day 16.
Bash is doing good, has been a bit nauseated at times but we have meds that help. He's still eating up a storm and had a massive diaper blow out at 5am this morn and I had to call in reinforcements! His bum is starting to get raw from all the meds, so working on a bad diaper rash, poor little dude, he screams every time we do a diaper change because it hurts so much. We get another day pass today since there isn't much going on. Chemo starts at 9am and we go home at 11am. My work friend dropped off a huge gift basket full of so many foods and treats! We have a nice lunch and supper together with grandpa and grandma. Bash is teething so much and using his new teeth to naw on a big carrot stick all day. At 7pm we take a long drive back to the hospital to let him nap. He's fighting so hard everyday and always has a smile, we are so proud of our little Viking.

Day 17.
Sebastian got a lumbar puncture today to check for cancer cells in his spinal fluid, so he wasn't allowed to eat from 6am onwards, as they put him under anesthetic in the operating room. He's soooo 'hangry' while we wait for the procedure that doesn't happen until 1pm and we have to sneak eat behind his back so he doesn't see food. More chemo after the LP, and we start a new drug called Asparaginase. Its given as an injection intramuscularly and it can cause some nasty allergic reactions so we had to be really careful and watch for rashes and such.   

                                                          Day 18.
Day 10 of chemo, day 18 of the induction phase (36 days in this induction phase) so we are half way into our first phase - there are many phases I will go into detail about later. His results from his spinal tap came back with no cancer cells there so that's good. He's a little trooper and we are amazed at his progress so far. Loving how much his little personality is starting to shine through! Learned he can get a reaction from people when he smiles and is scrunching his nose to smile even bigger at everyone - such a little ham. At the hospital waiting for me while I go to rounds, Dad and Bash look out the door into the hall and he melts everyone's heart that walks by, (A nice lady stops and puts her hand on the glass and you put yours up too - so adorable). Chemo comes early and we are given a day pass to home for a few hours again! Uncle Jerrad comes for dinner after work, and we had a great day. 

Day 19.
This morning Bash had shaky hands that freaked me out, but it went away after eating. Last blood test was really good again, 112 - hgb  129 - platlets  1.9 - WBC with no blasts found in blood again. Very good. Three oncologists stop by the room to say hi and see if we have questions. They're all very happy with his progress so far. In the evening the shaky hands start again. Doctors check his blood sugar and it looks good (5.3).They tell us this is a side effect from chemo and he may not be feeling well. He's definitely not feeling very good, but is still in a good mood. He spits up a few times and has the biggest diaper blow out ever!! One of the lumens on the Broviac port was submerged in poop and they had to clean it really well and then monitor extra close for a fever. We were offered a pass again but decide to stay as he was really tired and we were worried about having him get a fever at home. He had another dressing change on his Broviac line site.


Day 20.
Not feeling very good again this morning, lots of nausea and a few spit ups. Shaky hands and refusing food. Still nursing often and sleeping. Nurses check blood sugar and its still good levels. Doctors come by to see him and we tell them how surprised we are at how well he is doing, almost too well, and that we worry all the time about 'when the shoe will drop'. They say its only a matter of time before he gets a fever and they predict it will be over the weekend, but not to worry so much about it as they will take good care of him - If he gets a fever they will start him on antibiotics immediately. In the afternoon he gets chemo and the Asparaginase shot in his leg again. He starts feeling a bit better and eats so much! Pretty much eating from noon until 6pm! Two packs of baby food, oat cereal added, mashed potato, and chocolate ice cream for dessert! Trying to get his weight up and avoid putting in a feeding tube. We think he's gonna sleep good tonite!

                                                         Day 21.

He slept so well over night, finally! 5hr then 3hr stretch. So much poop! Went through three sleepers before noon -all the food from yesterday lol. First real throw up too, entire stomach on my blanket lol. Get another day pass home today. The music therapist stopped by the room and sang songs again with the guitar. He's mesmerized by the sounds and listens so intently. Finished chemo and went home and had a BBQ. Great day at home with him 'talking' and monkeying around.

Day 22.
We got yet another day pass! I started writing the blog this day so my updates will all eventually be here, and I can stop spamming people my daily updates. Uncle Jerrad and his girlfriend came for dinner. He had a pretty good day at home just hanging out with everyone.

Week Two

The days start to blend together a bit now and I had to go back to our daily updates to our friends and family, and our notes from each day to remember everything...

Day 8.Bash had a dressing change on his new Broviac line, and then an X-Ray to confirm it's placement. We noticed it looked like it had gotten pulled out a bit, but it was actually too far in so it's good it moved out a little - It's now right where it needs to be. The nurses unhooked him from all of his machines and he got to explore our room. His white blood cell count was now approx. 6k! Big difference from over his original 520k, and the doctors are still pleased with his labs. Sebastian is still a little emotional from the steroids and everything that has gone on, but surprisingly in a really good mood. Lots of smiles, very active, and so hungry! Nursing for over 20mins at a time (his norm was 6-8 mins before). Tried some new foods too – carrots, fish, peaches, and grandma's egg salad - couldn’t get enough of it. 

Day 9.
At 12:45pm Sebastian gets his very first round of chemotherapy administered. This was an emotional moment for me as I was still a bit in denial that this could be happening. It was a 'marker' that signified this journey was really beginning, and I also felt a weird sense of relief knowing we are giving him the medicine he needs to fight this. His medications today included Dexamethasone first (this one is given orally 3 times a day), then Vincristine, then Daunorubicin (This one is neon orange and makes Bash's pee orange), then Cytarabine. We spoke with the doctors today and all his blood counts were excellent - "he's a rockstar" they said. This is also the day our GoFundMe page goes live.

Day 10 
Second day of chemotherapy, Sebastian is still feeling well and his personality is really showing today. He's 'talking' quite a bit, bouncing around, and laughing lots. He still has quite an appetite and likes trying all the new foods we give him. He enjoys playing with all his new toys in between his naps. The doctors are still pleased with his numbers and everything looks good. We got to give him a bath last night and the hardest thing he had to deal with today was some blood work.

Day 11.Day three of chemo. Nap strike! Napped for only 30mins in the afternoon/evening. He had lots of energy bouncing and standing up with help. He likes to head bang lots lol, and we are trying to teach him to wave hi/bye. He likes trying new foods, and is not nursing quite as long - must be enjoying the new foods too much. He hung out with dad, grandma and grandpa Knutson while I had a break - My friends Louise and Renee took me out for dinner. I worried the whole time I was gone but it was really good to get out of the hospital room and have some much needed me time - the girls spoiled me.

Day 12.Bash had a great day! He had day 4 chemo meds around noon and tolerated them well. He gets an anti nauseant med as needed and so far has had no nausea or vomiting. He loves eating food, more than breast feeding it seems! The doctors are concerned he isn't breast feeding that well, so we also keep trying new foods, and today he couldn't get enough! For dinner he had half a pack of baby food - 65ml, another 75ml of breast milk mixed with 8 tablespoons of rice cereal! He's never eaten that much and we are so glad and hoping he keeps it up, otherwise they may consider putting a nasogastric tube in him for feeds. They changed the huge dressing covering his Broviac line, and he hardly made a peep. White blood count is 1.4k, hemoglobin was down to 83 (still good, but if it gets lower than 80 they will give him a blood transfusion - they expect this due to the treatment). Doctors still say he's doing so great. He loves giving grins to all the staff who come in the room. We had our first visit with the music therapist on the unit, and Bash loved the guitar! - He was so mesmerized and we really look forward to his visits.

Day 13.We have another great day. His hemoglobin count drops to 78, so they give a blood transfusion and he's turned a nice pink color. He still has tons of energy even though a low hemoglobin would make most people tired. He also still has a great appetite. Grandpa and Grandma Knutson watch him while Nate and I went to the mall across the street for dinner together (in the food court haha). Nurses are amazed that he takes all his oral meds so eagerly. When a nurse walks in holding the syringe he opens his mouth nice and wide! 

Day 14.
Friday the 13th - day 6 of chemo. Today his blood work came back and there were no blasts (leukemia white blood cells) found today - first time they have been zero! But he will still have them in his bone marrow. The chemo seems to be working. Hemoglobin count is 120, the blood received yesterday did the trick. We moved to a quieter room away from the nurses desk (yay, it was super noisy over there!) They also take him off some of his monitors since he's doing well, and there is talk of us being allowed out on a 4 hour pass! Nate learned how to change the dressing for the Broviac port, change the caps on the lumens, and secure the line if there is a break in it. His weight is up to 8kg and the doctors don’t want to put an NG tube in anymore (thank goodness!) We played BINGO over walkie talkie and won a Mickey Mouse stuffy! He was always infatuated with my Mickey Mouse coffee cup, and instantly loved his new Mickey toy. 

Day 15. 

15 days since our diagnosis and beginning of treatment. He's doing so well the doctors give us our first day pass! We go home for a few hours for the first time! He gets chemo around noon, and we finally hit the road around 2pm. When we get home, Bash is very quiet, likes looking at everything in the house. It has been over 3 weeks since we were home. There is a huge pile of toys he got for Xmas that he hasn't been able to play with yet. I had a 45min shower and a long nap in a real bed for the first time too. We all had a wonderful day at home and went back to the hospital around 8pm.

Day Four - Seven

Day Four.

It's now Jan 3rd. We made it to Calgary! At 9am the doctors check in with us and Sebastian's white count is down to 114k already! His fluid levels are much better, he only needs half the oxygen as given in Saskatoon (was 60% now needs 30%). They would like to reduce his sedation and wake him up, and remove his breathing tube today. They send him for an MRI to check his neurological status and make sure there are no migrated or new blood clots in his brain - he gets the all clear. At 11am our oncologist takes the bone marrow and spinal fluid samples. By 4pm he is starting to wake up, he seems a lot more comfortable than he did waking up in Saskatoon, and his pain is well managed. The Respiratory Therapist comes and his breathing tube is removed. He gets so mad and we get to hear him cry for the first time in 3 days! He sounds very hoarse. He actually has a huge dent in the roof of his mouth from the tube pressing there and I worry he may have permanent damage to his palate. The PICU nurse notices his right leg gets really swollen and blue when upset due to the blood clot, so another ultrasound is scheduled. He finally calms down, seems a bit dazed, and sleeps a bit longer. Its so good to see his bright blue eyes. I finally get to hold him again, he feels so good in my arms and I never want to set him down ever again.

Day Five.

Bash is 7 months old today! At 9am we meet Sebastian and are greeted with a big smile! He has the all clear from PICU to be moved to the Oncology unit. His white blood count is down to 83k! His bone marrow biopsy came back and doctors confirmed his diagnosis of B Cell Acute Lymphoblastic Leukemia (B-Cell ALL). At 12pm we move out of the PICU and into a room on the Oncology unit. We meet the new team, get a tour of the unit, and meet some volunteers - its pizza night! At 8pm the doctor comes by to remove the two central lines in each groin. Bash gets a little upset, but is given morphine and sleeps great that night. They plan to put in a Broviac by Friday. 

Day Six.

Our first day meeting with the doctors for sit down rounds - 3 oncologists, a pharmacist, hematologist, primary nurse, resident, dietician, and 2 nurses. Sebastian's levels are excellent! All teams are very pleased with his progress and the condition he's in now. The decision is made to proceed with treatments for his cancer. 

We also meet with our primary oncologist and primary nurse and go over the diagnosis and treatment plan for next 5 weeks. They tell us that since this is 'infant' B-cell ALL and his type presents differently than the 'standard' he will require more aggressive treatment and he is at a higher risk for infections as an infant. They said infant ALL is curable, with a 40%-50% survival rate at 5 years post diagnosis (not 98% like we had thought), that was a tough blow. They are very positive that they can cure his cancer, as he's been doing excellent so far. After 5 weeks we want to find zero leukemia cells in his body. Depending on the results after the first five weeks of treatment we'll begin the next phase. Spinal fluid sample taken yesterday shows no leukemia cells!

Day Seven.

Nate was not feeling well this day, had a sore throat so he stays away from the unit. He misses Bash so much, but we don't want to take any chances - its hard not having him there. An ultrasound today on the blood clot shows it's still in same spot but has good circulation and should breakdown safely. 

In the afternoon Sebastian is taken to surgery to have his Broviac Catheter installed. This is a port that will be used for the next year to give him chemo treatments and draw blood from. He starts his Chemo Sunday.

He's been quite emotional the last two days just from discomfort, and the steroids he takes make him moody so we have happy moments and not so great ones. I'm trying so hard to stay positive and optimistic, he's done so great so far and the team is very happy with his progress. I worry about when the 'bump in the road' will hit. I have to remind myself constantly to take it one day at a time. Bash is seriously the strongest most resilient kid I know and if anyone can beat this horrible disease it's him. #teambash

Day Three

 Sebastian tolerated coming off of the dialysis machine really well. They changed his intubation to spontaneous overnight as he was fighting the machine to breathe on his own. So now the machine was only there for backup if he didn't take a breath. 

The plan today - wean him off the breathing tube and have him off of sedation. He started to open his eyes and respond to our voices and would give us a hand squeeze. I so badly wanted to hold him again. He started fighting the breathing tube really hard though, he was trying to cry but no sound came out - I hated this moment and felt he was uncomfortable and in pain. They told us not to touch him or talk and that he would settle down if left alone. That seemed so wrong to me, and it took every ounce of my being not to lash out. I wanted nothing more than to get him out of there and to wake up from this nightmare. Then they came to do an ultrasound of his leg again, he got very upset so the decision was made to put him back on sedation and keep him on the breathing tube for his bone marrow biopsy and spinal tap the next day, then wake him up and try to wean him off the breathing tube again. 

Bash also had blood work come back positive that morning for two different viruses (Coronavirus and Rhinovirus), and to top it off a bladder infection (Klebsiella)! So they started him on antibiotics. At 10am a PICC line is inserted into Bash's right arm to use to deliver medications and take blood samples from since the femoral central lines have the blood clot. 

Around 3pm the Oncologists from Toronto, Calgary, and Saskatoon, and the PICU doctors meet. All agree that Sebastian would have the best treatment in Calgary and he is scheduled for air ambulance transport. Their deciding decision was that he needed a Leukapheresis machine to remove the white blood cells from his blood, and this machine is only available in Calgary. His white blood cell count is still at 440k and before any chemotherapy can start his WBC count has to be less than 50k. 

Everything starts to happen really fast. At 7pm the transport team prepped Sebastian for the move. Only one parent is allowed to go with him so Nathan calls West Jet and books a flight to follow us. Family gathers to send us off. Our transport team consists of a PICU flight nurse, a Registered Nurse, and a Respiratory Therapist. We take an ambulance to the airport at approx. 8pm. They load us up into the plane and we head out to the runway at approx. 9pm and only a few minutes later, the brake test on our air ambulance fails and we need to change planes. At about 10pm we finally depart Saskatoon, arrive in Calgary at 10:30pm (time change - we gain an hour). Nathan arrives 15mins later. We deplane and are transported by ambulance to the Children's Hospital and are taken to the PICU. They decide that Leukapheresis will be our second option, and they would like to do whats called an Exchange Blood Transfusion first as they feel it will be more effective. The room is a buzz of activity and everything is explained to us really well, we already start to feel we are in the right place, and that the transfer was the right decision for Bash.

At 2am Nate and I check into a parent room at the hospital, we eat some delicious chicken soup that was waiting for us in a care package from a friend when we arrived, and then we finally get a decent sleep in a real bed.

Whew, that was a very long day.