Saturday, April 12, 2008

Nobody Knows

One week later and our baby still has a fever. They don't know why. Another chest xray was done this morning to rule out something growing in her lungs. She's getting continuous oxygen to keep her saturation up (when she'll tolerate it). They started giving her little doses of morphine, which actually makes her feel well enough to play for short periods of time. But most of the time, she sleeps. The Infectious Disease doc (I have to get his/her name, Matt really likes this doctor) recommended we start Jillian on an intensive anti-fungal treatment protocol. Our HemOnc doc is hesitant because it is very hard on the kidneys and could make Jill feel a lot worse (is that possible???). They ran some more tests today, but won't get the results for another 5 days on whether she has this particularly scary fungus, Asperilligus (sp?). If we wait 5 days and she DOES have it, we may have waited too long, but if we start her on the regimen, it could down her immunity even more. They decided as a team (Matt included) to start her on ONE of the anti-fungal drugs as a prophylactic measure....this one requires pre-medication with Benadryl and Tylenol as many people are allergic to it, and continuous monitoring of her blood pressure, temp, and O2 saturation as all of these systems may be affected. How much more could her little 2 year-old body be put through??? Really??? For the record, the docs told Matt today that 60% of the time, kids will have a fever for a very long time and before they figure out what it really causing it, it goes away. Though everyone is on top of things there in HemOnc (Matt is thoroughly impressed at the moment with the quality of nursing and physician care Jill is receiving), no one seems ultra-concerned that things are haywire right now. This is apparently par for the course this late in the chemo game. One of the nurses told me the other day when I was dropping off clothes/food for Matt (and I was sobbing because I miss my Jilly so much), that she now looks like a kid with AML. "She's been such a firecracker!" the nurse said...."You guys just weren't expecting this crash....but this is what it really looks like. Some kids have these kind of results every time they come in for treatment. You've been lucky so far...."

I feel like I'm reporting from outside the prison walls without having a glimpse of my only contact is via phone. I still have a bit of a sore throat and my cough is nearly gone, but not quite. Anna may be getting sick...she asked to leave a party early tonight because her tummy hurt (she ate nearly nothing all day...very unlike her). Matt appears to be holding up pretty well....there is nowhere else he'd rather be, I know that. He is doing the only job that means anything to him right now, and that is being ever-present to his beautiful girl....whatever she needs, however much, however long. Matt is Jillian's Prince. Anna & I miss him dearly. I have so much love and admiration for him...more than ever now. We both know it is best this way. He is where he should be, and so am I.

I can't help but imagine what it would be like if Jill's Daddy was anyone else....if he was skiddish, or tentative, or scared enough to not be able to pull this off without making me worry about his mental state or capabilities. Matt is so unwaveringly strong and solid and certain that his presence and deep and firmly planted love for his little baby doll are all that she needs to get her through this dark time. His knowing she'll be okay (and telling me over and over that we only have a little over 2 weeks left--"in a perfect world," I have to add), gives me hope she really will be. When I am cynical, he is sure. When I doubt, he believes. When I fall apart, he builds me back up. I wish everyone could know the love I have for this man. I've always told him, since Anna was born, that I am so glad he's the daddy to my children. There couldn't be anyone better.

Thank you Phil and Lisa for your recent visits. If anyone else is interested in stopping by (even with Jill sick, Matt appreciates one visit a day....keeps him connected to the outside world), let me know and I'll get you in touch with him. I hope to back to the hospital soon. But I need to be 100% before I go. My Mom & Dad arrive tomorrow but won't go to the hospital until Wednesday (barring illness). I will keep updating the blog as I get new info.


Sandra Avila said...

What a beautiful blog, Michelle. You and Matt are a great team, and blessed to be together. That has got to be so good for your children.

I'm so sorry all of you are going through this rough time. Know that our love and prayers are with you.

jcl4kids said...

Hi Michelle, Matt, Anna, and Jillian,

I was deeply moved by your blog, Michelle. Now that I am a mother, I can only begin to appreciate the depth of your worries and pain. I admire your courage and strength...hang in there. I will be back in the office (from maternity leave) on May 1st. Please call me if you need anything at all.

Dr. Julie Lin