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