Update, Monday, 2/1

Isaac is still in the hospital - going on day 4.

Thankfully, his Grandma (my Mom) was granted permission to come and stay with him for the night, so I could come home and shower. (And eat. And sleep.) They do not allow any other visitors besides for parents/guardians due to the h1n1 outbreak - totally understandable. Daddy is in New Hampshire on business for 4 weeks, and cannot be here to help.

It has been a rough 3 days. He has been hooked up and is being pumped full of fluids 24/7. Yesterday, he had 8 diarrhea explosions. I mean e-x-p-l-o-s-i-o-n-s. He saturated his crib from end to end twice and needed brand new bedding.

His appetite is nil, and when he does eat a little something, it comes right out within 10 minutes. He is on a gastro diet. He turns away to any sort of food they offer, but he is drinking formula. No as much as he should be, but anything is something at this point.

The GI doctor came in today, and basically said that the diarrhea may be caused by a few possibilities. 1.) A small part of his bowel may have become twisted during surgery to remove his kidney and tumor 2.) Colitis or something to that manner 3.) 100% chemotherapy-related.

He is ordering an xray for tomorrow to rule out a blockage. If there is no blockage, then they will possibly take a biopsy of his colon to rule out no. 2 above. If that is okay, then most likely it is no. 3, and they will then give him medication to hopefully put an end to the diarrhea. They do not prescribe anything for the diarrhea without ruling out other possibilities first.

This is all in a nutshell. I am writing this on VERY little sleep and may sound jumbled. The nurses come in all hours of the night, and wake him up every 2 hours to take vitals. It is the most frustrating thing ever to JUST get him back to sleep, and finally get a chance to lay down, and they are back! That. Quick. They woke him last night, just to change a small pee diaper. I mean, c'mon now! Just because they are used to being awake at night, does not mean WE are!

Hello, from Oncology

Isaac was admitted into CHOC on Friday. His little body is not tolerating the Chemotherapy, and has lost a considerable amount of weight. I will update when I can (little - no internet).

Thoughts and prayers are very much appreciated during this rough time.

Chemo treatment #4 down - 15 more to go & Kidney U/S

Two words. Long. Day.

Isaac had two appointments today. Ultrasound at 9:30 a.m., and chemo at 11:30 a.m.

I dropped of Sheldon at school at 7:30 a.m. (Izabella was sick, so she stayed at home with Nannie and her Auntie Lissa), then myself and Isaac hopped on the 91 freeway.

We had to be in the Radiology unit - second floor - by 9:00 a.m. to check in. I got up to the receptionist, and she proceeds to ask me if I went down to the first floor to register first. Umm, no. No one told me that I had to go down there and register. I kindly explained that 1.) I would rather not take my immunosuppressed child up and down, here and there to each floor, when all you can hear in the waiting room is coughing and sniffing, and 2.) we are in insolation. She agreed, and called up someone from registration to come to us. Thank you! She sat us at a nice little desk - away from all the sickies. Registration man comes, we are registered. They ever so kindly put us in front of all other waiting patients and we are called in shortly after.

My little man was GREAT during the whole procedure. She got an awesome scan of his kidney.

We finished up pretty quick and we were out of there by 9:40 a.m., with nearly 2 hours to burn. Yeah. 2 hours. We picked up some brekkie/lunch, and drove across the street to the OPI clinic, where we sat in the car and waited. And waited. Isaac thought it was the funniest thing to grab my straw and yank it out while flinging lemonade all over the car in the process. You didn't notice how much he flung everywhere because it was dark in the parking structure, but when we left and got out into daylight - oh my gosh - there is stickiness everywhere.. even on the dashboard and windshield! Have no fear, we will have Daddy clean it.


By 11:15 a.m., I was done being in that car as much as Isaac was...


so we went in the clinic a tad early. We get our "Hi, Isaac!" but this time, the nurse says, "meet you in room (closet) 17. Do you know the code?" Me - "no". "Oh! It's 1-2-3-4-5". Wow, we qualified to find out our closet secret code! Yippie skippie!

Vitals:
Blood pressure - 101/59 (yeah!)
Weight - 10.21 kg (up from last week!)

Nurse Sabrina is back around 12:00 p.m. and sets up a 15-minute 4 mg Zofran drip.

Mary, the NP, comes in at 12:45 p.m. and chats with us for a bit. The scoop on the poop. The poop was negative for all 3 cultures. Most likely the diarrhea is chemotherapy-induced.

Chemotherapy tends to kill fast-growing cells. The cells in your hair, the cells in your bone marrow that make your blood, and the cells that line your intestines are among the most rapidly growing cells in your body. Therefore the typical side effects of chemotherapy include hair loss, decreased blood counts and damage to your intestinal lining. If your chemotherapy causes sufficient damage to the lining of your intestine, diarrhea may result.

She asks about his stools, and I let her know that they are still pretty watery. She puts in an order for him to receive 100 ml's of fluid before his chemo transfusion. This fluid was pushed through over a 1 hr time frame. Fun times. Isaac screamed. The. Whole. Time. He was so tired by this point. Tired of being in the closet, tired of being held, tired because he was so off his routine and was waaaaay late for his nap. Keep in mind, we left the house at 7:20 a.m., and we arrive in the OPI at 11:15 a.m., and our appointment was at 11:30 a.m., and Mary did not come in until after 12:40 p.m.



Fluids are finally pushed through, and nurse S is back with chemo V & A. When she removes the line in his port, she notices there is a little discharge, a.k.a. puss on the outer edge of the access point. Greeeeeeeaat. She advises us to keep a very close watch on him AND his port, watching for any signs of infection and for a fever.

In the end, we are out of there at 2:30 p.m. and do not arrive back home until after 3:30 p.m.

You wanna hear some good news? His ultrasound report came back STAT and his remaining right kidney is functioning PERFECTLY!!

Green light = GO

We were scheduled to arrive in the Oncology clinic this morning at 8:30 a.m., so they could draw routine labs since it is the dreaded 3rd week. Third week = both V & A treatments. When he receives V only, they draw his blood same day (Wednesday), directly before they push through chemo medicine. But, when he has to receive V AND A, they have to make sure his blood counts are okay ahead of time since the A wears down his blood cells like nobody's business.

We arrive and sit in our nice little isolation waiting room. Holy moly was it HOT in there. They had that heater blasting! Little Einsteins comes on, and gathers Isaac's attention for the few minutes that I was checking him in and signing the necessary paperwork. The nurse comes to the window shortly after and lets us know she will be right with us. Okay! Funny, because Isaac never even looks at the television at home.

Less than 10 minutes later, she comes to us with her little tray of goodies. She accesses his port, with ease, no flinching. Draws blood, and gives me the option of leaving his line accessed. I had to think about it for a few, then decided to just leave it for tomorrow's chemo. Isaac gets a little anxious during port access, so I thought I would save him a little nervousness for 1 day. That way, all she has to do is reach under his shirt and grab the 6 inch IV cord, rather than having to tear off the Tagaderm-film, wipe off the EMLA, douse him with alcohol and POKE. By step 3 (alcohol) he is already starting to become Mr. Squirmy Wormie, so by the time she actually pushes through the chemo, he is full on kicking n' twisting like an alligator.

Came home, and watched him like a hawk so he would not discover his new appendage. He did great! I was worried that we would get it caught on something, but we made it through the day.

Blood counts came back great! We are a go for tomorrow.

ANC: 4,600
WBC: 8.1
Hemoglobin: 10.5
Platelets: 547

Pictures, January 26

3rd & 4th day - post chemo

Currently, Isaac's chemotherapy falls on Wednesday of each week. He seems to tolerate it well considering, until the weekend following. Saturday, he starts feeling the effects, but by Sunday, it's all down hill. Saturday, he was a little bit cranky. He ate a teeny bit of random food that we offer, but no meals. Sunday the 24th, was the worst I have ever seen him. He was super clingy, and was very whiny. He was NOT feeling well at all. His color was diminishing - he looked very pale, and he had dark circles under his eyes.

Earlier that a.m., he had the worst diarrhea blowout. It literally climbed to the back of his neck. Let me remind you, he has had diarrhea for 2 + weeks! (We took in stool samples, but we are still awaiting the final culture results...) I called the on-call Oncologist, but she didn't really help much, and just advised me to watch him closely.

He is doing considerably better today. He ate a little bit of chicken soup, and some yogurt. He played a bit today, as well.

Tomorrow a.m. we go in for labs. Wednesday we have two appointments. First for his kidney ultrasound due to the high blood pressure, and then he has chemo (given his counts are okay).

He is sleeping soundly... but not for long. He tosses and turns ALL night long.

I'm standing!

They mentioned to us at our Oncology meeting that Isaac may become developmentally delayed due to the Chemo and it's nasty side effects...

Well, not our boy! Check out his new trick...

"Hey Ma! I'm standing!"