I'd Rather Take the Tram

Anyone else sick of the Cafe Rio post? I'm over it. I've been getting a lot of texts, emails and phone calls, so I figured I better give everyone an update. No...I haven't had the baby yet & I'll try to get around to returning calls, etc. later this week.

Ahhh....what a crazy week it's been! Last week was kind of the calm before the storm and this week.....well, the storm has now hit. On January 19, Rylee finished up her consolidation phase, which lasted through December and January. So, we got her new "road map" (a.k.a. treatment plan) at the end of January and had about a week and a half of some down time to gear up for the last (and final) phase before she hits "maintenance" (another phase that will last for almost 2 years).

To compare going through a trial to climbing a mountain is so unoriginal, but it really is a good analogy. We've been on this hike & it's had some harder points and easier points, a few switch-backs and many calluses, but the view has changed us and the help up has been incredible. As we go along, we're getting the hang of things, it's not feeling as challenging, we're just walking along, trying to enjoy things regardless, but ready to get to the top. At points you get tired, you want to give up, quit, but we've made it this far and we know that it will feel great at the end, so we keep climbing. We know that it will feel like victory when it's over, feel as if we've succeeded, we'll feel blessed, relieved, inspired. You know, all the things that the view from the top holds in store.

However, as I was trying to gear up for this week, I honestly just wished that I could take the tram. You know, the easy way up. I always get a little apprehensive when we switch from one phase to the next, not knowing how Rylee will respond/react. I worry for her, my heart breaks that this is her reality. I wish she didn't have to go through all of it. This last phase is called "Delayed Intensification", basically because it's a very intense hit right at the end. They told us about this phase at the beginning and described it as the "one, two punch." Just when you're feeling pretty good about things, this last phase kind of comes in and knocks you down.

And so...we're here. On the uphill climb once again. There are a combination of things that make this phase difficult. (Besides being in the heat of tax season and trying to prepare for another child plus a c-section recovery). There is just a lot more going on and it's very reminiscent of our first initial month after diagnosis. She gets a bunch of different kinds of chemo & gets it more often.

She started things on Monday. We had a nice long 6 hour day, which included a spinal tap and 2 hits of chemo through her line. Not to mention some Benadryl for a nasty rash that her dressing is causing her. We've had to change her dressing nearly every day, because her skin is so irritated, she'll pull them off. I don't blame her. She also started back on the steroids 2 times/day and we'll be back at the Dr. tomorrow for a PEG (chemo) shot given into her thigh. Poor thing. She had to get this shot at the first as well and it contributed to Rylee's regression with walking when we first got home. I hope that she'll do okay.

The new chemo they're incorporating this month is called Doxorubicin. It's had me pretty worried because they've said it's pretty harsh. It had to be given very carefully and it has weird side effects like pinkish/red urine, kind of a purply look around her eyes plus mouth sores and the Dr. is pretty sure this bad boy will take the rest of her hair. I had a pretty good break down Sunday night trying to prepare for it all. She isn't feeling great & has been pretty mopey the last few days, but will still play off and on. She has to get it 2 more times though this month and often side effects won't kick in for 3-7 days after the chemo is given. She's already gotten one mouth sore and the urine stuff has already passed. We have to wear gloves when changing her diaper for 24-48 hours after chemo is given because it comes out through the urine. I especially have to be careful since I'm pregnant- just an added component to it all. But, we're past that now. Her hair has thinned a bit more in the last few days. It makes me sad.

After tomorrow, she'll get treatment for the next two Monday's- just the chemo, not spinal taps. She'll get to go off the steroids next week, but will start up again the following week. This will all wrap up Feb. 17 (steroids will continue the entire week). We'll then have a two day breather, and baby brother is scheduled to be born Feb. 19. I'll probably have a 3-4 day stay in the hospital, come home and try to heal for a week and then we'll jump back into it all March 2.

On March 2, everything gets scrambled once again. Another spinal tap, 2 new chemo drugs and a new oral medication (given at home for about half the month). One of the new chemo drugs will take 1 hour to administer. That is longer and way bigger dosage than Rylee has ever had. The other chemo drug doesn't take that long to administer, but she has to get it every single day for 4 consecutive days, take a 4 day break, then go back and get it for another 4 consecutive days. Cancer treatment really is no fun.

This makes me tired just thinking about it. I'm sure you all understand why I'd rather take the tram. I can't even picture adding a nursing newborn, crazy hormones and all the other post pardom stuff into this whole scenario. My life has NEVER been crazier. Pray that a tram might come our way. We'll desperately need the view from the top!

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So... besides coping with cancer, this week has been full of driving carpool, taking Jace to speech, my Dr. appointment, hosting an enrichment activity at my house tonight, been trying to organize/delegate stuff for the Relief Society Birthday Dinner that will happen on March 5, which basically won't happen if I don't figure it out now. I'm putting together a slide show presentation for it & I've got to wrap it up by Sunday or else it's not going to happen either. I'm just so thankful that I have a committee and that everyone is so willing to share the load and carry this out for me. And, of course, we're trying to get used to Justin's earlier, longer plus Saturday hours. I've got some funner stuff to post about the better things in January...but we've got to be at speech by 8:45 tomorrow morning, followed by preschool, followed by Rylee's Dr. appointment, so I'll do it another day. Enough for tonight.