here is an update. I wrote this on Thursday...the day we had the appointment for our oncology team to write the refferal and transition Hadley's care to Hospice.
It's been a weird, hard, draining day. I want, so much, to take a Lunesta and go to bed. This is a day I never wanted to have to endure...although it won't be, by any stretch of the imagination, the worst...and I've done it on 'my own'. Hadley's appointment was at 10 this morning, it's now 9pm and I haven't even gotten a phone call from Brandon yet. The needs of the Coast Guard come first...even when your child is dying. I try hard not to complain. I am proud of his service and even proud that I am capable of thriving as a military wife...but, today, I felt alone and like I needed/need him more than 'they' do. Tomorrow is a new day and he will be home. I will have my chance to exhale and lean on him again. I am so thankful for him. What is that saying about not truly appreciating someone until they're not there? =)
The day started with Hadley coming into my bed at 5 am to tell me her head was making her angry. =( She told me she was ready to feel better and that she loves me. She cuddled in and we both went back to sleep...
After dropping the boys off with Mollie and the girls we got checked in at the hospital right on time. Hadley was totally compliant with the whole stat taking routine even though she's a bit out of practice now. She even remembered most of her favorite nurses and med assistant. They were tickled to see her and how much she'd grown up in a year. =) (This is our team here in Portland. We've been going to the hospital in Seattle for the last year plus.)
The appt with our oncologist was hard...but good. She knows Hadley. I think the fact that she hasn't seen her since June of last year helps, actually. The changes were obvious. Instead of saying "Hadley looks great." she said "Hadley, you look so happy." And that is the truth. We talked, she and Hadley talked, she did a little mini physical, we chatted about the boys...we pet a visiting cat and dog. I really felt like she was seeing Hadley and not spending the entire appointment trying to figure out what expiration date to put on her. At the end of the appointment she did ask me if I wanted her opinion. I told her I did and explained that we still haven't decided about school. She told me that "honestly after seeing her last few sets of films and what I found in the physical...well, Hadley's on her own journey. Most kids wouldn't be here. It's so hard to tell when she will go." She does do everything in her own time and way...so, it's no surprise she's doing this her way too.
Having said that, I had a really hard reality check today. Just when I think I know my girl and her limitations she amazes me. This time it hurt though. After checking with me to make sure it was ok our doctor asked Hadley "What happens when someone dies?" Hadley answered "Everyone is really sad." Up until that moment she hadn't let on at all that there was ANY negative association with dying. She has always talked in a very positive way about dying. I didn't even think it had occurred to her to be fearful that it might hurt or be scary...or that, an even harder concept for her to grasp, those of us she leaves behind would be hurt and sad when she's gone. Hearing that broke my heart. She knows. In some sense I'm glad. I want her to know how much she will be missed...how big her impact is. I don't, however, want her to have to carry the burden of worrying about us staying behind and being sad. My poor sweet girl has obviously been carrying this around with her. She answered without hesitation. All she needed was someone to ask her the right question. *sigh* It blows my mind that she is thinking of us. What a bittersweet blessing...something we once thought her incapable of. Now, during the most trying time of her life her first thought is of us. Her love amazes me. It is so pure and genuine.
So, our oncologist confirmed what I'd been fearing. The tumors are most likely growing down her brain stem When you ask her to stick her tongue out it clearly goes to the left and she BARELY even has a gag reflex left. This would probably explain why she's been having such a hard time swallowing her meds and has given up on food almost entirely. There are a few favorites she'll still put forth the effort for but, in the words of her doctor today "it's just too much work and too frustrating." For the most part she's drinking vanilla ensure. I was reminded that even if she's more comfortable in other positions and places she needs to be eating and drinking sitting up in a hard backed chair. No eating sitting in bed, the car etc. It's just too dangerous now.
Hadley told her without prompting that she has owies in her head and pointed to exactly where it hurts her. I explained that we usually do Tylenol and a nap...but that yesterday was the first day that I really felt like we didn't have control with Tylenol and rest. When she asked Hadley if Tylenol makes her head feel better she just shrugged her shoulders and said "I'm nice...I'm a nice girl." This broke my heart. I think that in her own way she was trying to tell us that when she's being mean and screaming and whatnot that it's not her...it's the pain. I already figured this...but, I kind of feel like my unwillingness to see her disease progressing also kept her uncomfortable...in pain. That's hard. So, from here on out she has a pain med script.
We obviously also talked about our options to care for Hadley. In her opinion, it is time to call in Hospice care. She may only need a weekly visit for the time being but, that's ok. She feels like the resources would be helpful etc. So, she's working on that referral. I thought I'd have a really hard time actually saying "yes, I think it's time too." But, it felt right. I kept my composure through the whole appointment. I kept a smile on my face so as to say "See, I'm handling this ok." or even to hide from other parents where we are on our journey. I've always feared letting newly diagnosed parents see 'worst case scenario'. Oddly, the hardest part, the point at which I finally 'lost it' was walking out of the clinic. I realized that it was our last time. We've spent the last 4 1/2 years of our lives in and out and in and out of these clinics and inpatient floors...and now we're done. The first of the things we'll leave behind. I wasn't prepared. I thought I was doing so well. Hadley bounced out of the clinic saying "Goodbye everyone. I love you." and I cried all the way to the elevator. She is so much stronger than I am.
Well, Hadley actually needs her meds and Liam must be growing because he's working on meal number 42 for the day. We're supposed to have internet by tomorrow afternoon so I'll try and be better about updating.
Please don't forget to email me your addy if you'd like an invite to the ball. FoxiFamily@yahoo.com
With Love and HOPE,