Loki's Journey

Morning:

Mr Loki is snoozing in the easy chair. His urine pH is too high for chemo to begin today, so we are waiting for more fluid to be given. Hopefully, his chemo will start in about one hour. I think we should be out of here by 3pm or so.

Someone had asked how long chemotherapy lasts. Well, for Loki it depends on the drugs being given. This is his 5 day treatment, we get here at 8am, and he is usually done by 2pm....or later if he needs counts or a doctors appointment. So it usually is an all day event.

When he gets his vincristine, its only a couple of hours, mostly waiting for counts to come back to say he is okay, or if he is needing any type of transfusion. Tomorrow, will be one of the doctors appointments, as well as chemotherapy. In addition, they want him to come back for counts on Monday and Friday of next week. His vincristine will be given Monday.

Well, his favorite thing right now is CHEESE, which means macaroni and cheese. He also learned to say one of the nurses names, Viva...comes out bee-ba. He has been playing soccer up and down the halls of the clinic all week long.

It's great he has hair! I am not sure how long it will last, but its long enough to run your fingers through! It's been a long time since we could do that.

He has been a little stinker though...he has got those terrible twos starting.....not too too bad yet, but kind of cranky over certain things. Plus, he has this one experssion. Its a combination of quizical wonder, and furrowed brows....it's his "angry/perplexed" expression. It's so silly.

We are back!

Loki had a blast at my brother's house, playing with his two cousins, Akira and Kenji, and Ross' puppy Pepsi. He keeps asking for the dog though....so we will have to see how that goes. We live in an apartment so that helps with saying NO NO NO. Loki got to see his grandma's and grandpa's, and great-grandparents, as well.

Ross and Yeng had just put in some black earth behind there house, so the little man went outside, and got really dirty!!! I was fun, he had a blast.

Loki also had a great time at Peter's parents house. I have pictures, but need to download them and put them on his website. He played soccer, T-ball, and lots of other games.

The only thing was that he was BORED on that 8 hour car ride home.

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Loki's counts were great today, and no indication that the infection is still present, and the cultures they took before we left came back negative. So, Loki began his first of 5 days of chemotherapy today. Currently, he is sleeping.

Other than that, not much new with Loki, other than he's doing all the little kid things that he should be doing.

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Please everyone keep Ian in their prayers, he is really quite ill, and his last set of CT Scans shows 3 main tumor sites, one in his hip, one deep in his pelvis, and one in the original site (where he had surgery). Ian's mom posted a prayer she wants everyone to keep in their hearts, please take the time to read it on Ian's site.

Thanks
Alicia

Okay, so the little man is doing well. So far the rest of the cultures are negative, but I am not going to jump for joy until the 4th day of negatives. Loki is doing well. He is eating and drinking, and no longer on continuous IV fluids, so he's only connected to IV during antibiotic delivery. This is good and bad. Good since now I don't have to chase him with IV pole in tow, and bad, since he can move ALOT faster.

Let's see: He learned book, pizza, and is routinuly saying bye-bye mommy, hello mommy, no no mommy...and other sentences. It is fun.

We are all excited about our upcoming trip to MN and WI to visit friends and family. We are still planning on leaving Friday, after Loki is discharged.

Other than that, the little man is taking a nap, and I am getting some much need rest.

I want to Thank Matt, Kelly, Mike, Anu, and Debbie for being there to help watch Loki a little bit this week, so that I could get in some much need time at work!! Thanks everyone.

Hey all!

Just an update.... So Loki's repeat blood culture from Monday came back negative after 72 hours and he has shown no signs of septsis, so we began chemo last night. He had not had a fever, he was eating well, and running, jumping, and playing, having a grand ole time, while mommy tried to chase him.

Late, late last night, the culture began to grow bacteria of the same type as before, SO that changes everything. The culture is now positive. But, the doctors do not think the infection has reached his blood, as he has shown no signs of a blood infection, just bacteria in the line.


To prevent, the bateria from reaching his blood, Loki now needs IV antibiotics for two weeks, including the past several days. Plus, they stopped chemotherapy....so that will continue at the end of April for 5 days, hopefully, as an outpaitent.

So rather than going back to daycare next week, he needs to stay in hospital until at least next Friday, as the antibiotics (two of them) are given every 6 hours, and alternating schedules. And, the nurses want me to save my sanity.

Plus, chemo is now delayed until they can clear the bacteria from his line. And, if that fails, surgically remove and replace the line, when the bacteria clears his blood.

Fun, huh? So, we will be here all week .

So, Loki has been admitted to M33-15 at the Cleveland Clinic (216-444-7738). Current plan is 2-3 days IV antibitotics, check second blood culture, take third blood culture on Wed. We may end up giving him IV antibiotics at home, once his 5 day chemotherapy is over, depending on the results of the blood culture. YUCKO.

All I know is he was fine earlier today, and after one dose of the antibiotics he is NOT feeling too well. Or at least he wasn't when I left to come home and pack some things for our stay. I hope the antibiotics don't make him sick, but I suspect tonight might be a rough night.

Well, Loki was supposed to start his 5 day chemo treatment today, but that is not going to happend, just yet.

I got a call from Loki's doctors on Sunday to let me know that a Blood culture they took on Friday came back as positive, Loki has Enterococcus growing in his line (not something that was expected). Probably in his urine too, but that has yet to be confirmed. But, he was running around, playing, and had no fevers so we decided to wait until today to come in. Just periodically cranky.

Well, the doctors consulted infectious disease and decided that, to be on the safe side, they should reculture Loki's blood with a new specimen, and give him 2-3 days of IV antibiotics BEFORE beginning any chemotherapy, as his white blood cell count is EXPECTED to drop, as it did last round, and probably stay down for longer. If the infection were to take hold at that time, Loki would most likely get really quite sick. So, IV antibiotics it is until the second Blood Culture comes back. If it comes back negative, then on to chemotherapy. If it comes back positive, then more IV antibiotics, and delay of chemotherapy.

This means two things (1) Loki is being admitted today for OH, about the next week to week and a half, and (2) we MAY have to delay our MN/WI trip, but I will keep everyone posted on that.

Other than that, he really looks, and is doing well. We can't believe he's got an infection, he's just not acting sick at all. But, then again, I wouldn't want to risk it. Not with those white counts dropping soon.

For now his counts are great!