Methotrexate stinks...both literally and figuratively. Piper is going through bibs like crazy because the methotrexate comes out in massive amounts of drool. And its a very distinctive smell that turns my stomach and reminds me constantly of what is in her tiny little body. No bueno.
We went to clinic today and planned to admit for the second round of HD Methotrexate but Nurse Amy took one look at Piper and told me that Chemo couldnt happen. When she heard about Piper not eating much, it clinched it and the Dr. came in and examined Piper and confirmed it. They did admit us for at least the night to do a blood transfusion and watch her eating while giving her Lortab to manage her pain. She has a (methotrexate) rash that covers her wrists, hands, knees and legs. It almost looks like a burn victim, and it is ugly...although that itself doesnt seem to be bothering her. She has ulcers on the insides of her lips and will not immediately take a bottle. I have to offer it to her and be persistant as she realizes it wont hurt if she sucks with her tongue not her lips. So far, since admitting she has taken about 3 oz every 4 hrs or so and I plan to keep it up throughout the night. Her bottom is broken down but in a diaper rash kind of way, not methotrexate rash kind of way.
Because of all of this, she will not be getting the HD Methotrexate for at least a week. Dr. Lew mentioned that she may get a smaller dose or perhaps even skip the next dose. I am not sure how I feel about that. Thanks to my father, I tend to not like procrastinating on anything and I get immense satisfaction out of following a plan to the T. We are not following the plan Dr. Lew...I am not ok with that. He told me to remember that the protocol they follow for treating Pipers Leukemia is merely a "blueprint" or educated suggestion and that tweaking it is normal in each case. But as I said before, I like a plan and I like to do said plan quickly and accurately.
Please pray with us for wisdom for the Doctors making these decisions. Seeing Piper in pain is horrible but if it ultimatley heals her, then I can handle it. Putting her through unneccesary pain is not good and I fear pushing her body too far. I am torn but am trusting that God will guide the Drs minds as they chose the best path. And also pray that Pipers rash heals up and her mouth as well.
I am so ready to be over this phase and it is only day 9. Oh my.
Plans are good. They layout what needs to be done. But people are individuals and since they don't adjust to the plan, the plans many times have to be altered to adjust for the good of Piper, in this case.
ReplyDeleteI only say this because I like plans too. There's a comfort in knowing exactly what is coming next.
I'll be praying for Piper and for wisdom for the doctors and you both.
Hugs to you from a stranger (but also a sister in the Lord and a fellow mom)
I wanted to reach out to you, after coming accross your site - my daughter was diagnosed at 10 weeks old with Infant Leukemia - she's now 4 1/2 and doing very very well. I wanted you to know that sweet Piper can make it through this , that you all can but also...that I understand all you are going through and my prayers are with you.
ReplyDeleteI am also part of a an Infant Leukemia Support group & a Facebook group by the same name. You can find those links at the bottom of Daisy's site: http://caringbridge.org/visit/daisyirwin
We have many members on all stages of this frightening journey, and we are here for you if you need.