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.
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 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.
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.
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