If I could take his place, I would in a fraction of a second.
He is having what I think is, mouth pain. Mouth pain is a common side effect from the Chemo drugs. He is drooling so much, and he is starting to refuse food. Isaac is still drinking, thankfully.
Poor guy has just been downright cranky, and so not himself. His normal daily routine is all wacky, so he is napping at all different times of the day. Something that Mommy is not used to!
We are only one Chemo in. There is a long road ahead of us, and he is already feeling the effects of the drugs.
Saturday, January 9, 2010
Boy in the bubble
I find it extremely hard to not turn him into that boy. Fighting a infection for a normal child is a challenge, let alone, fighting an infection in a immunosuppressed chemotherapy patient is downright scary as all heck! I have been keeping him indoors, in our safe haven we call home. I do take him out daily to pick up the kids from school, but that merely consists of: walk to car, wait for kids IN car, walk back into the house. I am terrified of taking him into a public place with a actual "roof" attached. (No fresh air).
They drill into your head, a million gazillion times it seems at each visit, that fevers are almost a guaranteed admission into the hospital. They do not take fevers lightly. Again, I am terrified! (When have I not been scared on a daily basis since that day in December?)
We actually walked out of the car on Friday... I felt bad for my other 3 kids having to endure being trapped at home, so I let them play at the park behind their school. I was sitting on a bench with Isaac, and this old lady sits down and starts chatting with us. I wasn't really listening to her, because all I could think of was keeping him away from arms reach so she wouldn't touch him. How sad is that?!
I cannot wait for the day, when this Chemo business is done and over with, so we can get on with our lives and Isaac may grow up like a normal toddler that he should be.
They drill into your head, a million gazillion times it seems at each visit, that fevers are almost a guaranteed admission into the hospital. They do not take fevers lightly. Again, I am terrified! (When have I not been scared on a daily basis since that day in December?)
We actually walked out of the car on Friday... I felt bad for my other 3 kids having to endure being trapped at home, so I let them play at the park behind their school. I was sitting on a bench with Isaac, and this old lady sits down and starts chatting with us. I wasn't really listening to her, because all I could think of was keeping him away from arms reach so she wouldn't touch him. How sad is that?!
I cannot wait for the day, when this Chemo business is done and over with, so we can get on with our lives and Isaac may grow up like a normal toddler that he should be.
Friday, January 8, 2010
THE Side Effects
Are starting to take place. Today was a so-so day, with good moments and bad ones (mostly bad). Isaac has been uber cranky, and I *think* he is feeling nauseated. Why do I say, "I *think*"? ... Because he cannot communicate to us, so we have to guess. He has not eaten much today, and he is drooling like mad, and gagging here and there. Tears at my heart. I gave him a dose of Zofran earlier this afternoon, hidden in a orange creme popsicle. (It is in pill form..) From now on, I am going to continue to the Zofran regardless, for the first 2-3 days after Chemo. The dose is scheduled every 8 hours, so he would be taking it once in the a.m., and once in the p.m. I would much rather prevent him from becoming sick, than wait for it to hit him like a ton of bricks.
Wednesday, January 6, 2010
Chemo treatment #1 down - 18 more to go
Busy, busy day today. First things first. I braved taking all three of my other munchkins into the Pediatrician's office today to receive the h1n1 vaccination. Since Isaac is going through Chemo, the very last thing we need is for him to get sick - especially with the h1n1 virus. Isaac had his vaccination yesterday at the Oncologist's. Dr. Esparza, Isaac's primary Oncologist highly recommended it, so I took his advice whole heartedly. Oh, boy, oh boy. The joy! They all seemed okay with the fact - they even had the order of who was getting it first, second and third... but when they lady actually came in with the shots, they all flipped! Here I am, with Isaac, trying to calm them down. Alexis refused to sit on the exam table, Izabella was shaking and Sheldon kep telling me, "Why you making me do this!". I felt horrible. All is better now, thanks to McDonald's $1 sundaes. (But, we have to go back for a booster in 1-month. Wish me luck!)
On to Isaac's Chemo...
We applied them EMLA cream at 12:15 p.m., and we were out of the house by 12:25 p.m.
We arrived at CHOC's OPI unit at 1:10 p.m., a little early for our 1:30 p.m. appointment. They weighed little man (9.65 kg) and immediately put us in a room - thank you, isolation! (He is isolated because he tested + for MRSA).
The nurse comes in and takes his vitals:
BP - 116/60
Temp - 36.6 C
She leaves, and comes back with a boatload of snacks, that soon enough, ended up crunched all over the floor. We sit and wait, watching a little TLC on the T.V.
A little bit later Dr. Shen comes in to do a quick check, and before we knew it, another nurse came in with a little box of Chemo goodies. Being the paranoid Mom that I am, I made her show me how they got the dose amount, and she also showed me the syringes with the same dosage. Hey, you never know... She proceeds to access his port, and he let out a little whine. It's hard to tell if he is actually in pain, or just a little ticked off because I have to hold his tiny arms so he does not try to yank out the needle. It seemed like she used a gazillion syringes full of stuff, but each time she uses a different med, she has to flush his port with saline. She first gave him the Zofran for nausea. Then came the Dactinomycin (which we will call "A"). The A is red. They call it the red devil. This is the medication that has the most side effects - the one that will make him nauseated. After that was the Vincristine (which we will call "V"). Following that, was the Heparin to keep his port from clogging up. He got really squirmy, and it was making me so nervous. Imagine an 8-month-old, squirming like a little worm, with a nice size needle just hanging out of his chest. They do not gauze it down because the total time from start to finish is actually less than 10 minutes. We just had to hang tight, and Mommy gritted her teeth. Finally, we are done, and she tops him off with a Spiderman bandaid. Thanks to Mr. Squirmy Wormie, the 10 minutes that it took to administer the medications, seemed like 30 minutes.
He has been awesome since then. No side effects to report. He devoured all his dinner, and has been playing like normal. They do say that it can take up to 3 cycles to start feeling the effects, and his hair will start to fall out between week 2 and 3 as well. Isaac's hair is just starting to become curly, so I will be really sad to see it go... but... it will grow back.
On to Isaac's Chemo...
We applied them EMLA cream at 12:15 p.m., and we were out of the house by 12:25 p.m.
We arrived at CHOC's OPI unit at 1:10 p.m., a little early for our 1:30 p.m. appointment. They weighed little man (9.65 kg) and immediately put us in a room - thank you, isolation! (He is isolated because he tested + for MRSA).
The nurse comes in and takes his vitals:
BP - 116/60
Temp - 36.6 C
She leaves, and comes back with a boatload of snacks, that soon enough, ended up crunched all over the floor. We sit and wait, watching a little TLC on the T.V.
A little bit later Dr. Shen comes in to do a quick check, and before we knew it, another nurse came in with a little box of Chemo goodies. Being the paranoid Mom that I am, I made her show me how they got the dose amount, and she also showed me the syringes with the same dosage. Hey, you never know... She proceeds to access his port, and he let out a little whine. It's hard to tell if he is actually in pain, or just a little ticked off because I have to hold his tiny arms so he does not try to yank out the needle. It seemed like she used a gazillion syringes full of stuff, but each time she uses a different med, she has to flush his port with saline. She first gave him the Zofran for nausea. Then came the Dactinomycin (which we will call "A"). The A is red. They call it the red devil. This is the medication that has the most side effects - the one that will make him nauseated. After that was the Vincristine (which we will call "V"). Following that, was the Heparin to keep his port from clogging up. He got really squirmy, and it was making me so nervous. Imagine an 8-month-old, squirming like a little worm, with a nice size needle just hanging out of his chest. They do not gauze it down because the total time from start to finish is actually less than 10 minutes. We just had to hang tight, and Mommy gritted her teeth. Finally, we are done, and she tops him off with a Spiderman bandaid. Thanks to Mr. Squirmy Wormie, the 10 minutes that it took to administer the medications, seemed like 30 minutes.
He has been awesome since then. No side effects to report. He devoured all his dinner, and has been playing like normal. They do say that it can take up to 3 cycles to start feeling the effects, and his hair will start to fall out between week 2 and 3 as well. Isaac's hair is just starting to become curly, so I will be really sad to see it go... but... it will grow back.
Tuesday, January 5, 2010
Pathology - Oncology - Chemo
Today was the day we have been waiting for since December 19th - diagnosis day. The wait has been absolutely agonizing.
Final Pathology results:
Stage II Wilms tumor - Favorable Histology (Thank you, God!) His tumor is considered a Stage II because the tumor traveled into a small vessel within the renal sinus, but was completely removed with surgery. We do not know, however, if there are tumor cells lingering behind. That is where the Chemo comes in. The Chemo will do a clean sweep, and hopefully (cross your fingers, toes, arms and legs - that it kills everything that is left "behind").
We are still waiting for some other pieces to the Pathology puzzle, which includes the results for the LOH screening. The Oncologist is predicting that they will be negative, but G forbid they are positive, we will go back in for a meeting to discuss other treatment options.
We are starting tomorrow with - Treatment Regimen: EE4A
100% outpatient! We are stoked. The original plan was to have him admitted every 3 weeks for 3-5 days, but they changed up the treatment regimen last week. Soooooo happy about that!! Leaving the other 3 kiddos once a month did not appeal to me at all. I really, REALLY dislike leaving them. (But, of course I will do anything in this world for my little man to be healthy again..)...
They accessed his port today for the first time since it was implanted. I was a tad bit worried for him! They applied the EMLA cream over his port site about 40 minutes - 1 hour before. The nurse cleaned his chest up, and then poked him. He didn't even flinch... but I did!!. Talk about a heart stopper watching them insert a needle into his little chest. After she was completed, she gave him a Transformers band aid. Cool beans!
We came home with 4 prescriptions. A huge tube of EMLA cream to apply before we leave the house for Chemo, Bactrim (antibiotic) to take every Monday, Tuesday and Wednesday to prevent infection, Zofran (anti-nausea), and Senna (stool softener) for when the little mister needs to poop! Talk about overwhelming.
On a side note: His surgical sites are healing up great!
Final Pathology results:
Stage II Wilms tumor - Favorable Histology (Thank you, God!) His tumor is considered a Stage II because the tumor traveled into a small vessel within the renal sinus, but was completely removed with surgery. We do not know, however, if there are tumor cells lingering behind. That is where the Chemo comes in. The Chemo will do a clean sweep, and hopefully (cross your fingers, toes, arms and legs - that it kills everything that is left "behind").
We are still waiting for some other pieces to the Pathology puzzle, which includes the results for the LOH screening. The Oncologist is predicting that they will be negative, but G forbid they are positive, we will go back in for a meeting to discuss other treatment options.
We are starting tomorrow with - Treatment Regimen: EE4A
100% outpatient! We are stoked. The original plan was to have him admitted every 3 weeks for 3-5 days, but they changed up the treatment regimen last week. Soooooo happy about that!! Leaving the other 3 kiddos once a month did not appeal to me at all. I really, REALLY dislike leaving them. (But, of course I will do anything in this world for my little man to be healthy again..)...
They accessed his port today for the first time since it was implanted. I was a tad bit worried for him! They applied the EMLA cream over his port site about 40 minutes - 1 hour before. The nurse cleaned his chest up, and then poked him. He didn't even flinch... but I did!!. Talk about a heart stopper watching them insert a needle into his little chest. After she was completed, she gave him a Transformers band aid. Cool beans!
We came home with 4 prescriptions. A huge tube of EMLA cream to apply before we leave the house for Chemo, Bactrim (antibiotic) to take every Monday, Tuesday and Wednesday to prevent infection, Zofran (anti-nausea), and Senna (stool softener) for when the little mister needs to poop! Talk about overwhelming.
On a side note: His surgical sites are healing up great!
Monday, January 4, 2010
Post-Op Urologist Appt
Went without a hitch.
Was in-and-out quick, except for the sign in and fill out the "routine paperwork". Isaac loves to make it a difficult task for me to write his name and birthdate - let alone 5 pages of crazy questions with crazy answers!
All looked great with his incision spot, and he is healing nicely. His incision on his neck is spitting out 2 stitches. Looks a little odd, but she convinced me not to worry.
Tomorrow is the meeting with the team of Oncologists. I am n-e-r-v-o-u-s.
Was in-and-out quick, except for the sign in and fill out the "routine paperwork". Isaac loves to make it a difficult task for me to write his name and birthdate - let alone 5 pages of crazy questions with crazy answers!
All looked great with his incision spot, and he is healing nicely. His incision on his neck is spitting out 2 stitches. Looks a little odd, but she convinced me not to worry.
Tomorrow is the meeting with the team of Oncologists. I am n-e-r-v-o-u-s.
Friday, January 1, 2010
Happy New Year
Last year was going great, up until the last 2 weeks. This year is obviously just a long continuation of last months chaos, but I have faith that after this summer, the nightmare will be over and Isaac will be cancer free. Praying for a new year full of health, happiness and prosperity.
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