Tuesday, April 6, 2010

Isaac is home

Isaac was discharged yesterday, around noon. All tests came back negative, including his blood culture. They also swabbed his nose to check for a few strains of the flu as well as RSV and those were negative, as well.

We arrived home around 1:15 pm, and by 4:00 pm, the fever had returned. I called the Oncology after hours clinic, and the on-call doctor advised me to take him back the the Emergency Room and have him re-admitted. I felt a little uneasy about taking him back, so I held off. The fever did continue through the night, but tapered off this morning. He is still a little warm, high 99's.

It is extremely frustrating. The fever could be coming from numerous sources. Alexis has been sick with a virus, complete with a fever and cough. It could also be teething... his first front tooth just popped through about a week and a half ago, and the second about to come through, too.

The downside, is that he is not drinking well. He is pushing away all of his bottles. He will take sips through a regular cup, but that is not enough.

I am waiting to see if the fever spikes, and I will call his Oncologist before they leave for the day at 4:00 pm.

Oh, and may I add... that when his line was de-accessed, the needle was bent. Thank you, E.R. nurse.


ER LABS:
Hemoglobin: 11
Platelets: 253

Saturday, April 3, 2010

Hot Potato + ER + Admission

Isaac developed a fever yesterday around 3:00 pm. I was out Easter shopping, and did not return until about 4:30 pm, and found Isaac and Daddy cuddling on the couch. Isaac was not feeling well, at all. I immediately put in a call to Oncology, and the on-call Oncologist called me back about 40 minutes later and advised me to take him to the Emergency Room right away, and she made a call and informed them that we were on our way.

I didn't get there until about 7:00 pm. We waited about 10-15 minutes, then he was called back.

Vitals were taken. I forgot his drug list, so I had to try to remember the gazillion prescriptions he is taking, along with all the doses. You would think they would have it in the system?

We got back into a room, and waited a bit. A male nurse comes in to access his port. A sidenote: I used to frequent another blog, Pablove. Pablo's father blogged, that if a nurse asks you what size needle they use to access the port it is a huge red flag. You can read the story here. Well, first thing the nurse asked me was, "What size needle do they use to access his port?" My first thought was, "Oh, crap." I told him that I honestly do not know. I mean the nurses on the Oncology floor obviously know what they are doing, it is a daily routine for them, and they have not told me what size needle they use. The nurse leaves to grab his supplies, and the "needle" and comes back. Sweat starts pouring instantly from my head. I got really, really nervous. We lay my little man on the table and he proceeds to access his line. I'm going to tell you. I should have listened to Pablo's Dad. I should have listened to my gut. The nurse cleans and goes to access, and totally puts the needle way to high in his port, and SIDEWAYS. Facing down. Thankfully, he did not miss, and he got good blood return, but dude. Could you not aim? He was shaking, so I knew he was as nervous as I was. Child life came in, along with another male nurse to help. I was thinking, "Man, do they really need all four of us to help with accessing a 11-month-old? The Child Life lady had a Disney Cars book, you know, the ones that have the buttons that you push when you are reading along... Every time she would push the button, Isaac would dance and bounce his belly up and down. He couldn't rock out completely because the other male nurse was holding down his legs. (Like he was going to race off the table or something...) These nurses need some serious 101 from the Oncology ladies.

After that mishap, his first dose of heavy duty antibiotics and some fluids... we were transferred by wheelchair to the Oncology floor, room 318. Isaac was not a happy camper last night, so Mommy is home tonight to get some much needed sleep. Daddy is taking over for this evening.

The bummer? Isaac spent his 1st Christmas in the hospital, and now will be spending his 1st Easter there as well.

We are hoping for a Monday morning release, if all tests come back A-OK.

Wednesday, March 31, 2010

Chemo treatment #13 & Scan Results

Only 9 more weeks of Chemotherapy left and 2 actual infusions. TWO infusions. Did you read that? TWO! The end IS in sight. I can see it!

Isaac did awesome today, partially because we are now out of isolation, so no more closets. No more door codes. No more claustrophobia for Mommy. We now are in little "cubby" type rooms, with small 6 foot walls dividing each room. No doors, just curtains. It sorta looks like an E.R. setting.

I took him in his blue car. We had to actually wait in the waiting room.

The nurse took us back after about 10 minutes, and got his weight. 10.8 kg (23.8 pounds)! That is the most he has ever weighed. He has been eating and drinking great, which is a blessing. He had Mommy worried crazy for the first 8 weeks. I am thankful that he has made a change in the right direction.

His other nurse came in and started his Zofran (5 mg). It dripped over 15 minutes, then Mary came in to see us. She was quite surprised to see how well he is doing. Oh, and we got the results of his scans... NED! No Evidence of Disease!! I'm so happy. He will have additional scans at the end of treatment in June, which includes an abdominal ultrasound, chest xray, CT scan and possible MRI.

After Mary left, his nurse was back to administer his Dactinomycin and Vincristine-2.

We do not have to go back for 3 weeks.

Monday, March 29, 2010

Pictures, March 29



Chemo treatment #10 + Scans

Wow. I have sure fallen behind here. Isaac has been doing so awesomely well lately, that I have had minimal time to myself! I am not complaining one bit, though. It is so great to see him back to his normal little self.

Isaac completed Chemo treatment #10 on Wednesday, March 10th. Protocol was the same - A & V followed by 100ml of fluid over 1 hour.

I am SUPER HAPPY to report that as of this Wednesday, we are 9 weeks away from the END OF CHEMOTHERAPY! There are 9 weeks left, but he only has 3 more infusions. (Since they are spaced 2 weeks apart - I explained this in my last post).

Tomorrow we go in for blood counts (I'm sure they are great!) and then Wednesday he will receive A & V2.

He underwent his mid-treatment scans on Friday, March 26th. An abdominal ultrasound was completed as well as a chest xray to check for any metastasis. My little trooper screamed through both tests. I don't blame him. He has been poked and prodded more that most 100 year olds. I have not received the results of the tests as of yet. I am hoping no news, is good news.

Wednesday, March 3, 2010

Chemo treatment #8 & 9 down - 10 more to go

I am running a little behind with updates!

Isaac had his chemo infusion #8 on Wednesday, February 24th. It was actually the smoothest, quickest appointment to date!

Appointment was at 1:00 p.m. We were in and out of there in 1 hour.

Weight: 9.8 kg (up .1 kg from the week prior)

He did awesome from week #7 - week #8. He ate like a champ, and poo was normal. (Yeah, and yeah!)

He received Vincristine only.

LABS:
ANC: 1,710
WBC: 5.3
Hemoglobin: 10.6
Platelets: 417


Today was chemo infusion #9. I am happy to announce that we only have 10 more to go! (Actually less, but I will explain that in a bit)...

Daddy had the day off today, so he was able to go with us. I was glad, since this was his first time he had a chance to tag along and witness first-hand how the infusion process works, and I wanted him to have a chance to ask the Oncologist any questions that he had for himself.

Once again, our appointment was set for 1:00 p.m. We arrived pretty much AT 1:00 p.m. - we are never early for anything when Daddy is with us! He is rarely ever on time for anything, so I am actually surprised we weren't late. ; )


The nurse took him straight to the scale when we "checked-in". Weight: 9.8 - Same as last week. It's okay if he maintains his weight, just as long as we don't go down.

They set us up in our regular room. Room 17.

Vitals were taken, BP: 115/68


We waited about 45 minutes to 1 hour before his primary Oncologist, Dr. Esparza, came in. It was nice to actually see him, instead of the NP. Nothing really new to report, but I did let him know that his appetite has once again come to a halt, and the diarrhea has started again. He did mention that the diarrhea most likely is due to chemo (we knew this), and it is very rare. He said that is not tolerating the chemo well, and his little body is very sensitive. We will just have to bite the bullet and get through the last several weeks of chemo, then treat as necessary when the treatment is over. He said he will give him 2-weeks after chemo is completed for his bowels to return to normal. If they do not, then they will start some invasive testing. For the meantime, we need to rid his body of whatever cancer cells are left behind, so dealing with diarrhea is on the bottom of our list for now - just as long as he stays hydrated, obviously. But, oh my gosh! These poopies are outrageous! They explode up and out every single time, like a volcano. It's crazy. His tummy must hurt, because he screams every time. He still wakes up many times through the night, crying and kicking. I make him a bottle, but for the past few nights, he has been refusing it. He drank 4 oz before his nap this morning at 10:30 am and vomited it all up shortly after. Bath time happens a few times a day, needless to say!

Another thing I mentioned was Isaac's hair growth. His hair is growing SOO fast!! He said that most likely, the chemo is killing off some of his hair follicles and the other ones are growing out of control. He does have significant thinning on the sides of his head, but look at the comparisons...

6 weeks ago


Today! (Doesn't he look so grown-up?!)


The nurse came in directly after Dr. Esparza left and started his infusion.
Here is a video of the chemo infusion process.
Click here

Since we ended Cycle 3, his infusions will be on a different schedule from here on out.

Week 10: A & V
Weeks 11 and 12: No chemo
Week 13: A & V2 (V2 is a beefed up version of V, a stronger dose).
Weeks 14 and 15: No chemo
Week 16: A & V2
Weeks 17 and 18: No chemo
Week 19: A & V2
Weeks 20-22: No chemo, resting period. END OF CHEMO.

So, technically, he has 13 more weeks of Chemo (total 22 weeks), but only 4 more (but stronger) infusions. We will still have to go weekly, though, for lab draws.

LABS:
ANC: 1,150
WBC: 4.5
Hemoglobin: 11.2
Platelets: 463

His ANC levels have dropped significantly since last week. They went from 1,710 to 1,150. A "safe" ANC is 1,500 and above.

Friday, February 26, 2010

I still would have chosen you

I came across this poem, and thought it was just perfect..

If before you were born, I could have gone to Heaven and saw all the beautiful souls, I still would have chosen you.

If God had told me, "this soul will one day need extra care and needs", I still would have chosen you...

If He had told me, "that one day this soul may make my heart bleed", I still would have chosen you...

If He had told me, "this soul would make me question the depth of my faith", I still would have chosen you...

If He had told me, "this soul would make tears flow from my eyes that would overflow a river", I still would have chosen you...

If He had told me, "our time spent together here on earth could be short", I still would have chosen you...

If He had told me, "this soul may one day make me witness overbearing suffering", I still would have chosen you...

If He had told me, "all that you know to be normal would drastically change", I still would have chosen you...

Of course, even though I would have chosen you, I know it was God who chose me for you...


Author Unknown