Long Story Short

Feels like forever since I updated... I'm mostly frustrated lately. This last round was tough and it felt like we didn't know what was going on a lot of the time. There seemed to be a big disconnect with the doctors, nurses, and team about Bash's care and letting us in on it.

I was feeding Bash lunch one day, only had a shirt and diaper on him as its way less messy that way, and our nurse came in to do an assessment and said he looked mottled to her. I said he was cold from the no clothes and needed to warm up - he looked normal to me. Well apparently she felt differently, and hey - great that she was watching out for him, but she told the new 'baby' doctor on service that day, who took one look at him, decided he was tachy (fast heart rate), and showing signs of infection?! Ordered a fluid bolus, a blood panel to check for infection, and started antibiotics (that means no passes home for us). I should have stood my ground, made them wait an hour, as I knew he was fine. Low and behold, two days later nothing grew from the blood cultures and antibiotics were stopped. I'm glad they were on their game but it was unnecessary and I felt like no one was listening to me.

We battled to get a few overnight passes since he was all clear for infection, not receiving any meds, and had high counts. We weren't discharged home like we had thought as our oncologist wanted Sebastian admitted because his immunity was expected to drop from the last week of chemo. Once his white blood cell levels dropped to zero, we were confined to our hospital room, twiddling our thumbs. Waiting is the worst.

I seriously could go on and on about these small little inconveniences that kept happening this round. They really don't matter that much by themselves but they kept building up and really had us feeling disconnected from the hospital team. We saw him as being happy and healthy (his blood counts were good, and he was feeling well) where doctors and nurses seemed on edge and uneasy over the smallest things. We questioned ourselves if we should be more concerned and cautious as well. Were we missing something? By mid week his counts started to come up again and we were in the clear. No fevers, infections, or virus's materialized despite the doctors worries thankfully. (Side note - I'm a tad OCD and disinfect the room three times a day haha).

Finally we were discharged! The weather has been warm and we got outside to enjoy it - forgetting about any other chores and things for the time. We needed this break and enjoyed being together as a family again - a small glimpse into the future and something to hold onto as we head back into another hospital admit and more chemo.

The BMA (bone marrow aspirate), the BIG one, was done this past Friday (March 24th). Sebastian also had his broviac line changed as his last one was blocked and not working properly. To get these two procedures done together so Sebastian only needed to be put under anesthetic once, was another huge headache I wont go too deep into. Basically there was a miscommunication on times between the two teams as different doctors do each procedure. We were told different places to go for admitting, different and wrong explanations on how the line was replaced, didn't know which doc was doing the BMA, and told different start times - even re-scheduled once. Just when we thought we had it all figured out, waited our allotted time in clinic, had gone up to the induction room for the surgery, they realized both teams had the time wrong and we were sent back down to wait more. Sebastian was so hungry he was nearly inconsolable. How do you tell a 9 month old he can't eat for ten hours?

We finally got him in, the procedures done, and enjoyed a beautiful weekend at home. We get the BMA results on Wednesday, and also get admitted for the next phase of treatment (Consolidation Phase), which goes ahead no matter what the BMA results show. 

Finding it really hard to stay positive, optimistic, and not complain about everything. Life seems to be at a standstill while we wait for the chemo to do its thing and the results of the last bone marrow biopsy so we have a better understanding of our path ahead. Everything I can cross is crossed. Trying our best not to think about it and worry. Cross that bridge if and when we come to it.

Back on Track

What a roller coaster couple of weeks! After the first Methotrexate (MTX) round, delay in clearing, and high toxicity side effects, Sebastian started the next round of MTX chemo two days late (Thursday Mar 2nd). The doctors started him with extra fluids earlier for his second round, and he ended up clearing the MTX in two days as normally expected, and without the extra swelling or skin breakdown we had last week. Friday morning Grandpa and Grandma Knutson were back in town from a trip to Phoenix, and they came to the hospital for a visit. They brought Bash a fancy new hat! I'm not sure who was more excited the grandparents or Sebastian. Bash also turned 9 months last week! Time is flying by.


He did really well this past round and we were discharged home on Sunday night as his next chemo would be due Thursday. We had a lovely 4 days home and it was great to sleep in our own beds without interruptions or IV alarms ringing off. Grandma cooked so many delicious meals, and grandpa would get up early so Nate and I could sleep in a little bit. On Thursday morning (Mar 9th) we returned to the hospital for more chemo. We started out in the out-patient clinic at 9am, where they draw blood and send it to the lab to make sure Sebastian's counts are ok to start his next chemo. There is a lot of waiting around in clinic. after his blood work was taken the nurse did a quick checkup. Then we waited again and the doctor came and did another checkup. More waiting. Once his lab work came back and his counts were good, the doctor gave the go ahead to start. Then the chemo was ordered and they make it from scratch in pharmacy, more waiting. This chemo round is given while in-patient so we had to wait for a room in the oncology unit. We waited in a 'room' (basically a crib in a hall with curtains around it) where Bash was hooked up to IV fluids while we waited for the chemo to be made. We tried to get him to nap - hard with a baby who is such a light sleeper to begin with, in a new environment, in a noisy hallway with other patients around, announcements on the hospital intercom, and nurses coming to check on him constantly. We didn't get a bed on the unit until almost 3pm, and our chemo still wasn't brought in from pharmacy.

Once in our new room, another check up was done and the chemo finally arrived and was started. This round he gets Cyclophosphamide, Etoposide, and Mesna - No more Methotrexate this round thankfully. The new chemo's he gets can cause bladder irritation and bleeding, the Mesna is to help prevent that from happening. These drugs are given by IV over 2 1/2 hours, Mesna over 4 hours, daily for the next 5 days.

Bash was an overtired, emotional, nauseated mess on Thursday night and was up every hour or so. We got him on a better schedule for anti-nausea drugs the next day and he had a couple good naps and slept much better the next night. Because he is so nauseated he isn't eating well and the doctors have been really pushing for that nasogastric tube to be put in. I begged for one more day on Friday as I still feel his fluid intake is sufficient, its getting him eating thats the trouble. Our nurse agreed she doesn't think we are at the point of inserting a tube just yet, we need to get on a better anti-nausea regime. I'm afraid if we put the tube in he will feel full and wont eat for that reason and if he is already drinking well it seems silly to put it in to give him what he is already willingly drinking. His weight has been stable, and I agree with the doctors that we want him to grow, but I'm just not ready to accept that he really needs it yet. I'm hoping after this last chemo round and a bit of a break that he will feel hungry again and we can find some foods he will eat. If not then I will grudgingly accept the stupid tube that is giving me so much stress and anxiety.

Saturday night we were given an overnight pass home - yay! As we were leaving the hospital Bash started to feel warm to me but his temperature was ok. We got home, had supper and he started getting really fussy and did have a fever of 38.1 - If he gets a fever at home of 38.0 we are to monitor it for one hour and return if it remains. If he has a fever over 38.3 we have to bring him back immediately. We monitored him closely for an hour, we had our bags packed up and were ready to head back to the hospital. 38.2 was his highest temp, then thankfully his fever broke. I called the unit to be sure they wouldn't want us to return and we were told to watch him closely overnight and return if it spiked again. It didn't and we decided he must be teething - knock on wood. If he gets a high fever they start him on a 10 day course of antibiotics, pause the chemo treatments and we wouldn't be able to leave the hospital. We really don't want another setback or delay in his treatments.

Bash has one more day of chemo after today (Sunday Mar 12) and we will hopefully be discharged home until the next phase.  He has an out-patient appointment booked already for March 20th where he gets G-CSF (Granulocyte colony-stimulating factor) which will stimulate his bone marrow to produce cells. They do this as an injection into fatty tissue and he gets 6 doses, the first in hospital, then the others at home twice a day. On March 23rd he is scheduled for a bone marrow aspirate - the Big one that will tell us what our next plan of attack is.  If they find Blasts (cancer cells) in this one then he will need a bone marrow transplant. If there are no Blasts then we continue with chemo onto the next phase (Consolidation Phase).

We are looking forward to some much needed rest and recuperation in the coming days and have all our fingers and toes crossed for remission. You got this Bash! We all love you so much! #teambash

Phase Two

This past week has been a rough one. After our lovely long weekend at home, we returned to the Oncology unit Monday night, they took Sebastian's blood and his neutrophils were 1400! Well above the 750 count needed, he was ready for his next Chemo phase to start. Bash went for his bone marrow aspirate and lumbar puncture Tuesday morning. It went really well, he was given the Intrathecal Methotrexate in his spinal fluid and once back in his room they went ahead with his IV Methotrexate (MTX), it runs for 24 hours and they run intravenous fluids called Sodium Bicarbonate with it to help break down the MTX. This chemo is extremely hard on the body and we want to get it out as fast as it goes in. He tolerated the first 24 hours so well, started to get a bit puffy from all the fluids on Wednesday.

By Wednesday evening his kidney function was starting to show signs of strain. The Leucovorin drug he was getting to help rid his body of the MTX wasn't working well. His little body showing all the symptoms of chemo toxicity. To protect his kidneys and other vital organs, a special medication called Glucarpidase (an MTX antidote also known as Carboxypeptidase) that they didn't have on hand was ordered from Vancouver. Bash was put on cardiac monitoring overnight and his blood drawn every 6 hours to check that the MTX levels were dropping. Here is a great article I found that explains how these drugs work for all those curious.

Thursday morning he looked like the Michelin man, so puffy his right eye almost wouldn't open. His skin started showing signs of breakdown, anywhere he had a bit of irritated skin seemed to flare right up. He has a blister on his thumb, and red sores on his fingers and toes. He started refusing to eat anything, including breast milk. I have been so worried about him getting a nasogastric tube, and have been trying everything to keep his weight up (full fat yogurts, even ice cream). As much as it hurts my heart, an NG tube may be a blessing in disguise, We're also worried he isn't getting the proper nutrition that he needs to stay strong.

Friday he started looking less puffy. His MTX levels had come down significantly but were still high, and intravenous hydration continued. The doctors increased his Leucovorin from every 6 hours to every 3 for Friday and Saturday. Bash continued to show signs of skin breakdown and was now refusing to take his medications he has been previously so great at taking. He was irritable and seemed to be feeling nauseated. As he can't tell us how he's feeling, it's a real guessing game choosing what medications would help him feel better.

On Saturday night Bash awoke with blood curdling screams, I quickly swooped him up, but no amount of cuddles would soothe him. I was terrified that something was really wrong, our nurse heard his cries and came to see him promptly. He was gagging and dry heaving and crying so hard. We both decided to give Gravol and Tylenol ASAP and she ran to grab both. Bash continued to cry and I'm sure he woke up the whole unit. He finally settled back down, I held him very closely for a long time, my heart ached for him and I would have kept him next to me in my bed if I could. Only 3 hours later he awoke with the same horrifying scream and started choking and gagging, vomiting up a huge ball of mucus. The nurse came quick again with meds in hand, and thought he must be pooling mucus secretions while he was sleeping and that mucositis - another side effect from MTX toxicity was starting. He held on to me so tightly and did not want to let go, it took everything in me not to break down sobbing - I want to stay strong in front of him. I raised up the head of his bed to hopefully help his secretions.

Sunday the doctors thought about giving the Glucarpidase again as his MTX level still wasn't cleared out, but changed their minds and kept up the Leucovorin. His puffiness decreased quite a bit but he still looks different and his weight is up by a kilogram. It is unusual for it to take this long to clear the MTX level - I thought we would have been spending another weekend at home. Because it's taking so long to clear, we may have to postpone his next cycle and let his body recover first. We asked the doctors if they would skip this dose as he is to get this drug on day 1,8, and day 15, protocol says not to skip any as it could put him at risk of not being cured, which I completely agree with. We also asked about a change in the dose, is this too high an amount for him? The doctors said they will review the protocol but likely they will just push more fluids earlier next time and have the Glucarpidase on hand and available right away. Appears that our 3 week in-patient stint will be much longer than anticipated and unfortunately no passes as he needs around the clock IV fluids and medications. His electrolytes have been thrown off by all the fluids as well and he has needed a few infusions of magnesium and potassium as they have been dropping frequently.

Today (Monday) his MTX level was so close to being cleared, it's currently sitting at 0.19 and needs to be 0.1. His skin breakdown remains, but is no worse except for some mouth sores starting to pop up. We are putting Polysporin on his sores, and doing a mouth rinse 4 times a day when he'll tolerate it. Tylenol around the clock and Morphine when he needs it. He still wakes up after long naps with excess mucus accumulation, and we have suction set up at his bedside. Today after a nap he started choking and couldn't breathe for what seemed like eons (was really only a few seconds) - he scared us really badly. Crossing our fingers he is clear by morning and the next treatment goes better than this one. Two more rounds for this phase.

Day 50

We got discharged home for the weekend! On Thursday Sebastian's neutrophils count was 400 and the doctor sent us home on an overnight pass thinking his neutrophil count would probably increase to 700 by Friday and we could start his next phase. It was only 600 though and the decision was made to discharge us home for the weekend, let his counts continue to recover, and give us a much deserved and appreciated break. I was a bit torn, wanting to have a few days at home (I haven't slept in my own bed since December 23rd when we left for Christmas holidays), and also wanting to start treatments and get on with it, the sooner its over the better. Alas, we got the break and being home has been so awesome and definitely something we all needed! Packing up the hospital room was interesting...who knew you could accumulate so much stuff in a month! We will be re-admitted to the Oncology unit Monday night and treatment will begin Tuesday morning with a bone marrow aspirate and chemo injected into his spinal fluid. I'm gonna go enjoy my time home with my boys!

Week 5 and 6 - Hurry up and wait

The past week and a half has been a lot of waiting around. The fever Bash had was caused by a bacteria and the antibiotic they started him on ended up being the right one to treat it. The course runs for 14 days total, every 8 hours, so he's on it for another 6 days (finished Feb 17th). It's really the only reason we are stuck in the hospital - I'm sure we would have been discharged for a few days while we wait for his counts to come up. His blood counts have been steady but neutrophils are not increasing because of the infection, and we can't start the next phase until his counts are better. Doctors think they should start increasing after today and hopefully he will be ready by next week.

Currently he only gets an Enoxaparin needle twice daily for the blood clot in his leg (that is being reassessed next week to see if it's still present), Fluconazole as a preventative med for fungal infections, a mouth rinse 4 times a day, and Vitamin D. His spirits have been up and he's such a happy little dude! He always has a big smile for anyone who comes in the room. He's fascinated with the cleaning staff wiping everything down, mopping, and the sounds a fresh garbage bag makes. Dr. Celia comes by to assess him each day and said he's the best part of her day. She says his smile makes her so happy and that all the nurses just adore him, he brightens everyone's day!

This week he started feeding himself off of his tray and has become selective in the foods we give him - he doesn't want 'baby food' anymore. He prefers to feed himself, and anything on the spoon he grabs and inspects before putting the spoon in his mouth 'on his own'. He is very interested in textures like muffins, bread, and cookies. His favorite is still ice cream (thanks grandpa and grandma!), and he enjoys avocado, banana, and sweet potato. His appetite has definitely decreased since being off of the steroid but his weight has remained steady.

He is starting to lose some hair on the back of his head and I'll probably take a snippet for his baby book in the next few days in case it does all fall out - our Oncologist was surprised he still had his hair when she visited him last Sunday. He's had some bad skin breakdown on his bum from the chemo meds and it is quite an ordeal to change a diaper. We have to wear gloves as his pee and poo are filled with chemo and are toxic - even 5 mins of him sitting in a wet diaper with no barrier on and his bum is red and raw. When we change him it is a three step process - Cavilon wipes which are sticky and then dry into a film to protect skin from moisture, then Stoma powder to help absorb any moisture, then Triad cream (zinc) as another barrier over both of those. We only use soap and water on the dry wipes they provide in the hospital, the sensitive skin wipes we use at home irritate his skin. We have to let his bum dry first as the barrier used to protect it can also cause breakdown if there is any moisture left. This has led to a few 'showers' all over his crib while he airs out. The 3am diaper changes are so much fun lol!

He's been working up to crawling for the past few days and its so funny to watch him try to figure out how to get around. We have a giant mat in our room we can let him play on, don't worry I'm not letting him play on dirty hospital floors :)

We are still getting daily passes after his 2pm antibiotic and its so wonderful to take him home, even for just a few hours. Shout out to all the people who have been making us meals as when we are home we can just toss something in the oven and not worry about cooking or prep work - it lets us spend this free time to hang out with our boy - we appreciate it very much!

A Road Map of Sorts

Everyone keeps asking for the roadmap, "When will Sebastian be finished treatment and get to go home?". This is a great question I wish I had the answer to. I wish I had all the answers...it's extremely frustrating to not 'know' and not be able to let family and friends in on 'the plan'. It's really a day by day, week by week process that can change in the blink of an eye. It makes me feel vulnerable and helpless, like I have no control. I'm such a planner with everything, and this drives me crazy.

So here it is, the best 'map' I can give in this moment...

Lets start with a few basics.  What is B-cell Acute Lymphoblastic Leukemia? also known as B-ALL
I found a really great video that explains it here. I think some of the treatments make more sense if you understand the type of Leukemia Bash has - they actually said he was a mix of both ALL and AML (Acute Myeloid Leukemia) and AML is very rare, but the AML cell count found is very low and they will treat him as ALL. Him having both makes him a unique case though, and I believe the reason Saskatoon Oncologists wanted to keep him as a patient, so they could get experience...(I'll take the experienced please). Also since he is so young - Infant ALL, he is at a higher risk for infection and its tougher for his body to be able to fight things off, therefore he is much more closely monitored for fevers and they want to keep him inpatient for monitoring.

Alright, here is a link to the 'basic' phases on the Sick Kids website: Here they explain a lot of his medications too. There are normally 5 different phases, Bash has an extra one at the start, which is his next one, we just finished Phase 1.
- Induction Phase (5 weeks)
- Induction Intensification Phase (4 weeks) *we are waiting to start this phase*
- Consolidation Phase or Re-Induction (3 weeks)
- Interim Maintenance Phase (4 weeks x3 - we do this phase three times alternating other phases)
- Delayed Intensification Phase (8 weeks x2)
- Maintenance Phase (there is no time frame, should be completed after 109 weeks)

This may all be changed depending on if he sticks to this treatment plan. In approximately 4 weeks he should be finished the 'Induction Intensification Phase' where they'll check his bone marrow again. If they find none or minimal disease at this point we continue on. If the cancer remains then we may need to do the bone marrow transplant treatment which will be another long journey.

We met with our primary Oncologist Dr. Lucie on Sunday to go over the next phase, what to expect, and side effects of the chemo. We have to wait for his neutrophils white blood cell count to be above 750 before they can start. We learned that he will be an in-patient for this phase and most of the next phases too. She said that we would be staying at the hospital until week 19 of treatment. Five more months. That was really deflating. We were hoping to be discharged by the end of February, and only coming in for clinic visits. Dr. Lucie expects at least two years of treatments if we continue on this course - 109 weeks, not counting any delays from illness or infection.

Again, all this could change. It depends on the results of the bone marrow aspirate taken at the end of this phase (3-4 weeks). We're hoping for good news, and to follow the "easy" path of this treatment plan. Sebastian has been handling the treatments really well, and no blasts (leukemia cells) have been seen in his blood samples for a few weeks now, so we have high hopes the treatments are working and he he will get over this upcoming hurtle.

First Bump

Tuesday Jan 31st was a much better day! Woke up happy and started playing peek-a-boo on his own. His personality has come out so much in the past few days and we are so happy to see it. No chemo meds today and, you guessed it - pass home :)

Wednesday Sebastian slept overnight for seven hours strait! That hasn't happened since he was about 3 months old and I kept waking up to check on him, and watched his heart bumping along on the monitor.  If I was at home and he had slept that much I would have been beside myself when I woke up thinking the worst. I'm hoping he will transition to sleeping better while we are in the hospital and once we get home I will be more used to it.
I changed his dressing today with a little help from the nurse - I have done them before on adults a few years ago but it is much more difficult to change one on a wriggling little baby, and especially different on your own kid. He did really well with it and we were able to position it better too as the nurses were having trouble drawing blood from it - now it works like a charm.
We had a visit again from the music therapist - Bash is so in awe of the guitar and its really funny to watch him. He is starting to get more into it each time and they brought in some instruments (an ocean sound maker, tambourine, and maracas) for him to play with and join in - the maraca spent most of the time in his mouth haha!
We also talked to the doctors today about when his bone marrow aspirate will be as he needs one before the next treatment can start. They want his neutrophil (a type of white blood cell) count to be at least 750 before the next phase can begin. For the past week they have been bouncing around 0 to 300 due to the chemo treatment. There is no time frame on how long that takes, every child is different they tell us. It could be a few days or a few weeks. They assured us that waiting will not allow his cancer cells to come back or mutate, or get stronger, and the waiting will not change the course of the treatment in anyway. They do think that by Monday his numbers will be returning as he is still doing so great.

Today he woke up happy again - not from sleeping as he was back to his wake every three hours schedule, sigh. His hemoglobin came back low this morning so they plan to give him a blood transfusion and right before they start it he started getting really fussy and warm to touch. The thermometer says 38.3 - his first fever, and the one we have been expecting for the last few weeks. Our 'bump in the road'. It happened so quick and we weren't expecting that. I was really worried at first but the nurse handled it very well, all his other vital signs were stable. Blood cultures were taken and sent to the lab and we should know in 48 hours or less what if anything caused it. They started him on Piptaz (an antibiotic), and then give him Tylenol and start the blood transfusion. He has been very clingy all afternoon and only wants his mom. In some ways I am relieved that we have finally had the fever the doctors have all been waiting for but I was also so hoping to make it through with no fevers. As I write this he is finally fast asleep, having a much needed nap to get his strength back up. Nurses will monitor him overnight and we will keep him on Tylenol if he needs it. Looks like our possible discharge home for the weekend will have to be postponed.