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