Loki is doing well. He had a 5 day chemo course, from last Friday thru this past Tuesday without any hitches. He did require a blood transfusion on Monday as his hemoglobin and hematocrit were low, and his counts hadn't even begun to drop yet. His yeast infection is gone, but he still needs to be on Amoxicillian throughout the remainder of chemotherapy, so the yeast infection could pop up again some time.
From Peter, in response to a family inquiry:
He is doing well, we have just been a bit busy this week as he was in
the hospital for a 5 day chemo treatment and we had visitors from New York
during the same time. Heather, Greg and Maddy (Madilene?) although
Maddy was only here Monday and part of Tuesday. They came in to the
Cleveland Clinic for Greg's reoccuring lung collapse problem. Maddy is the same
age as Loki and Heather and Alicia met online for women giving birth in
July of 2002 and Loki and Maddy met last May when all the July mommies went
to Minnesota.
The kids had a blast, when they first saw each other again
they hugged several times, then Loki planted a big wet one on Maddy's
lips. Which she promptly shoved him away. Later that night when
Heather or Alica asked Loki if Maddy was cute, he reached his hand out and said
"HOT". That was hilarious and Alicia promptly blamed our friend
Alfredo for teaching our son such things. (Alfredo is a friend of mine from
work, who is from the DR and has asked on a couple of occasions to borrow our
son to pick up some "HOT" chicks.)
Other than that Loki has gained 1 pound as of last week, he's up to 22.5 lbs and still eating, although
this last chemo has reduced his food intake a bit or he's going through that
picky toddler eating stage or some combination of the two.
His vocabulary has been growing he can now say: car, hot, kitty, HI, BYE, momma,
dadda, Coco (his daycare providor's dog), light (without the T), huh?, yes,
yeah, ja, NO (many voice influxations), all right, Idown, blue and book. On
rare occasions he has said blood and heprine. His favorite facial
expression is his oh face, where his jaw elongates, his eyebrows go up
and his mouth becomes a little oh. Well got to get back to work, talk to
you later.
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Updates:
Cece is doing very well after her surgery, but is having problems feeding. The doctors removed her entire tumor. Unfortunately, this has affected one of her kidneys which is no longer functioning.
Anna is doing better, she is out of the hospital and fever free, as the docs have put her on steroids. However, her cancer is back, despite all her treatments (sad sad news), and they are currently discussing treatment options.
Ian: I got an email from Ian's mom last night. I have heartbreaking news to report. Ian's cancer is back, and has invaded the bones of his pelvis. I don't know much more than that, as this news was given to them yesterday. Ian's family is also discussing and exploring treatment options.
Please keep all our little ones in your prayers.
Loki's home from the hospital.
He ended up having a urinary tract infection with two different bugs growing, both common bugs already present in our bodies. But, their growth can get out of hand in immune-suppressed individuals leading to infections. In Loki's case, an infection of the stoma region, but we are not sure if it progressed to a kidney infection or not. I don't think so. I have been told kidney infections are painful, and Loki wasn't showing any pain. He can't really tell us if he is or isn't in pain though. I so very much wish that he could.
We wouldn't have even known, except for one of the Oncology/Hematology nurses noticed his urine looked funny, and sent it away for culture on Friday. He was fine until he got that fever Sat night, but by then, the culture was growing stuff, and they knew it was a UTI.
So, he had IV antibiotics (3 types) for about 3 days, and we brought him home yesterday afternoon. He is up and running again, literally. Brought him to Karen's this morning, and all he wanted to do was go play...so it looks like things are going to go well today. He was sent home on a 30 day course of Amoxicillian (2x daily), and will most likely be on it for the rest of chemotherapy. It's up to his urologist to decide. But, the doctors did say that Loki shouldn't have any more risk of UTI than a regular individual once chemothearpy is done.
Loki's appetite is improving, and he is enjoying a variety of food, just not a whole lot of it. last night, he actually tried eating a tater tot for the first time! I am going to try to work more fruits and veges into his diet. I am not sure how well that is going to work though. He is not real big on fruit juices, and fruit textures. He does like apples though....and lemons.
His stoma therapy nurse suggested giving him cranberry juice (or even mixed)....maybe I will make him a smoothee (Thanks Heather!!), to keep the acidity of his urine up to prevent urinary infections. Also, I want to try to get him to more yogurt to ward off those yeast infections. He hasn't had any of those since early Dec. 2003, and I would like to keep it that way.
Loki has vincristine on Friday, and a check of his urine and his blood counts.
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CeCe: I have not heard anything. But, I was told that she is coming in Friday for a follow up visit, and that she is doing well. So I will take that as excellent news! I hope to see her and her family on Friday, as we will be there too.
Anna: Anna is doing okay. In some respects she is doing better, in others not so good. Her fevers are fewer and far between. At last count, she was 40+ hours without fever....which is EXCELLENT. Unfortunately, her cancer is back. The chemotherapy did not appear to do anything more, than make her even sicker. I am not sure what the course of action is from here, I didn't get a chance to discuss that with her family. She celebrated a birthday in the hospital last Friday....51 days and counting in the hospital. I hope the docs let her go home soon, if even for a little while.
Lucas: At last email, Lucas was doing very well. I need to check up on his website to get some more information.
Ian: Again, also at last email, Ian was doing very well. Need to quick visit his website as well.
Please keep two other children in your thoughts and prayers.
Cody.... whom I found out has been sent home to be with his family in hospice care.
Corbin.... a little 8 mth old, just diagnosed this month...occular cancer, removed, then spread all over his little body within the next week. It's so unfair.
Well, Loki's chemotherapy went really well, and the docs let us out of the hospital on Sat. at 3:30pm to come home. Unfortunately, about 15 min after arriving home Loki had a fever of 101.6 which didn't go away, even with clothing removal. We thought he might just be overheated, so back into the hospital we went.
His actual temperature was about 102.2, he got some tylenol, and antibiotics. His fever came down. Again, it spiked around 2am, 102.1 . Well, according to the docs he may have a UTI and an ear infection, so he will have to stay probably another 48hrs, to confirm those two things, and wait for his blood cultures to come back.
Alicia
