So we waited a long time today to get admitted but that was for different reasons.
Mallory's broviac was plugged AGAIN! It's plugged so they cannot draw labs from it but they can put medication into it. Its has a blood clot at the end of it that is preventing it from working correctly. So they are hoping by running fluids into it throughout her chemo treatment it will hopefully open up the lines. If not we go in for another surgery to replace this one. That took 5 hours alone to get figured out, they did a dye study to figure out where the problem was (which only took 15 minutes) but we tried the anti-clotting agent again before they did that.
We saw her primary doctor, a nurse practitioner, a physician's assistant, and a few nurses. All in all they cannot fully explain to me why her stomach will not hold much food, there is no way they will do anything until after Chemo. Especially since she is gaining weight, she's a chunk at 13.5 pounds! They did change her from Zantac to Prevacid to see if maybe reflux is causing her feeding issues. (KEEPING MY FINGERS CROSSED THAT ITS PART OF THE PROBLEM!). So we wait, I will remain sleep deprived and in a Zombie state for the next few months.
A lot of people have asked how they can help us, honestly meals are great (I was just saying how I have no energy to make even mac n' cheese). Coming over and playing with the girls would help me also. And seriously Mallory snuggles are pretty amazing and Jillian can totally keep you up to date on apples and the Sun on her Magnadoodle. hehehe.
We were admitted around 5, they administered her Zofran and a steroid medication to hopefully combat that nausea a little bit more this time around. So far SO GOOD! No big reactions like she had with the Etopocide (Mallory had MAJOR issues with the Etopocide and growing devil horns the minute it reached her little body). THANK HEAVENS!
She received Carboplatin, Doxorubicin, and Cytoxan today.
The bigger she gets the higher doses she gets, so the Carbopatin was actually in a bag today instead of an itty bitty syringe. She received this drug last time we were here for Chemo and did really well with it then. The main side effect from this drug is low blood counts and nausea.
Cytoxan was the 2nd drug given, this drug they are extremely meticulous about, they check her urine to make sure it is diluted enough so it does not sit in her bladder for long and cause any damage. The main side effects of this medication is hair loss (which Mally only has a touch left in the back now), nausea, vomiting, loss of appetite, and low blood counts. This medication cracked me up a little bit it came in a HUGE syringe, I even asked for a souvenir one I thought it would be a good keepsake. So they gave me one to take home, adding that to the baby book will prove to be a challenge :-p (I promise to upload pictures when we get home)
Doxorubicin is the 3rd medication she got today. It came in an itty bitty syringe and it was BRIGHT RED, they warned us her pee might turn red for a few days after receiving this so not to be alarmed at all. This is one of the main side effects along with hair loss, nausea, vomiting, low counts, and mouth sores (Luckily we haven't noticed any of those from Chemo yet).
Now I listed the most common side effects obviously there are more than just those they include kidney damage, heart damage, hearing loss, sensitivity to light (good thing its WINTER and we don't leave the house unless were going to the doctors!), and diarrhea. They do monitor these VERY closely even though they are not that common.
Chemo is given to destroy cancer cells by interfering with the cancer cell's growth cycle. So basically they are killing all the bad cancer cells but unfortunately that means they have to kill some of the good cells along with them which is why she gets low blood counts, needs transfusions, and is monitored so closely.
The doctors were concerned that her ANC (her ability to fight infections) would not be high enough to do Chemo this week, so on Monday she received a Neupogen Injection to raise her numbers. We were hoping they would reach about 750 instead they are at 4,700!!!!!! Which is a GREAT number to start chemo at! We are hoping that since she reacted so well to just the one injection that she will react the same way if she would need future ones and hopefully we would not have to give them everyday.
This round of chemo is a VERY short one, it involved the three medications and we just have to stay 1 night and will hopefully be home early tomorrow.
They will be scheduling another CT scan and catocolomines test (they can detect Neuroblastoma cells in her urine) to make sure the chemo they are giving her is working in the next few weeks. They do not want to give her these meds if they are not helping destroy the Cancer. We have been given great statistics and this treatment works 90% of the time, so we just pray that she is part of that 90% of kids it works for.
All in all I have consumed mass amounts of diet coke all day long (Mallory and I only got around 4 hours of sleep last night, she was FUSSY FUSSY!). Chemo went great, one more round down! And praying for good news in a few weeks!!!!
Very interesting to hear about the medications! I love how educated you guys are and thank you for sharing the info! Continued prayers for little Miss Mallory!ReplyDelete