This has been one rough stinking day. First of all her port got dislodged during chemo and Cisplatin was running out from under her tegaderm all over her body and April's. You should of seen the nurses scrambling. Putting on their gowns and masks and getting out the Chemo spill kit. We rushed Ashley to the bath and washed her off. The IV team came and I pulled her tegaderm and her port out. The needle flipping around trying to make sure nobody got pricked. Then the attending said that we didn't have any heparin in her port and it would clog if we didn't access it right away. So no time for any numbing agent. Just have to put that big needle into Ashley's chest without anything. She screamed, we cried.
Then we were out side and one of her IV lines comes undone. Have to redo all of the tubing.
But this is the big one that really scares me. Her AFP is climbing. It was 7.3. Anything under 12 is normal. It is now 13.9. No doctors around to really tell us anything till we retest tomorrow. I can tell once we got the labs that the nurse didn't want to say anything so she called the fellow. The fellow had to call the attending but it was 8:00pm. This is what I have feared the most. Who would ever think that 1.9 over normal would bring us back to the feeling in the first week. I hope to god it is some kind of margin of error thing but we don't know. It basically doubled. I hope that she isn't chemo resistant.
IF THERE ARE ANY SURVIVORS OF HEPATOBLASTOMA THAT ARE READING THIS AND HAVE HAD SIMILAR EXPERIENCES PLEASE POST ON THIS SITE. WE ARE SCARED AGAIN AND IT SUCKS.
Ashley is still awake, the dexamethasone if keeping her awake and she seems like she is going to vomit.
Tony
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5 comments:
Hang in there - my daughter just got the all clear after 3 1/2 years of similar ups and downs. Don't let small dips and rises in the AFP scare you too much. It's like the stock market, rising and falling happen from day to day but you have to watch the overall trend. For you, I hope that is downward. It sounds like your daughters number is very low, which is great. Obviously, your doctor is the best source of information. I know it's hard to deal with the ups and downs. I wish you the best and hope your daughter comes out of this just fine.
Hang in there, guys. We are hoping (and believing) that the number doesn't mean anything significant, and that it's time for you to start putting some of this behind you. Please keep us posted!!
I agree..just hang in there. That AFP number changes all the time - especially in the beginning. After 3 years, Kasia's AFP has finally settled into the 1-2 range, but if I remember correctly, there was test not so long ago where her number was 4. I panicked too - it's understandable.
I continue to keep your family in my thoughts and prayers and have all the faith that Ashley will do great!
Kara
Mom to Kasia
Sorry to hear that you have had a bad day :( Try not to worry too much about her afp (easier said than done, I know). Luke's afp has been up and down ranging from 5 to 11 since being in remission. Last month it was up at 11 which worried us as he also had another result that came back abnormal. This month, both figures are back down and his afp is 5. I hope this is just a blip and it is back down again when you next have it tested. Thinking of you. Claire x
Just wanted to let you know that we have experienced this AFP rollercoaster... and it can make you crazy. It does make sense that Ashley's rise in AFP can be attributed to liver regeneration. You are all in my prayers. Please see my AFP fluctuation posts on www.cancerkids.org website under "mulkerron".
Here some of my daughter, Tess's, AFP draws:
Prior to resection it was 198 (and 44,000 at diagnosis)
Dec 11 - liver resection w/ clear margins
Dec 17 - 26
Jan 2 - 21
Jan 11 - 72
Jan 18 - 21
Feb 12 - 18
Beg March - finished chemo
March 24 - 18
April 29 - 6
April 30 - Roux-en-Y surgery / port removal
May 20 - 16
June - 27
July - 14
August - 10
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