Waiting to Exhale...

Well, we're not quite out of the storm yet. Thankfully we've got some stuff behind us, but it seems like we're still dealing with a lot of the aftermath. Still trying to get things 'normalized' around here.

Exhausted: The other day, I decided to count how many different medical-related appointments we've had collectively as a family over the past two months & it blew my mind. In February, we had 18 different appointments in 28 days and before March is over, we'll have had 24 in 31 days. This includes any hospitalization, Dr. visits, lab appointments, home health, chemo, ER visits, etc. This does not however include any medication, which is a schedule in and of itself. Not to mention our other obligations and life schedule.

Hospital: As mentioned before, Rylee had to be admitted to the hospital last Saturday and actually had to stay until Tuesday. Basically she caught the flu bug. What's usually a mere inconvenience for most of us, really is a big deal when Rylee gets it, especially in the middle of so much chemo. Her counts were so low- it just really got to her. All things considered, we actually have been lucky that this has been her only hospitalization (besides a couple in/out [meaning several hours)]trips to the ER) since being diagnosed, especially since we've been in cold and flu season. And we almost made it the whole way without having to be admitted. Shucks!

She loved it when her brothers would come & visit. Things can get pretty boring in the hospital after 4 days. She always does remarkably well though- I cannot say enough how much her temperament, personality, cooperation and disposition are such a blessing. It is no coincidence that she came here with her spirit. Heavenly Father knew she would need it to carry out what her plan had in store for her. All of the nurses loved her & couldn't believe how well she does with all of this crap she has to go through.
She's all smiles! She was so glad to be unhooked from all the stuff for awhile. Rylee is always a little pack rat. She gathered up all of our stuff & made this cabinet her secret little place- putting everything inside. She'd go back & forth- in her own little game in her mind. I on the other hand, got a good read in. Must say that Tuesday's with Morrie is a great book about life lessons. Great perspective!

It's such a pain to have her in the hospital. Thankfully our family was here to save us again. I would pump bottles and our family would help us out with the baby and Jace. I would stay at the hospital all day until Jus could get off work and then he would come & trade me off and stay the night with Rylee, so I could be home to feed the baby overnight. Then it would be up first thing in the morning, trade Jus off, he'd come home & shower and off to work again. Thank goodness it's over, at least if we can keep her healthy for awhile.


Good News: Last Thursday, Rylee finally finished Delayed Intensification (the last phase before maintenance). It has been both delayed and intense! Since she got sick- this treatment got pushed off a week initially and with nearly 2 straight weeks of chemo, a spinal tap and the flu in between, it certainly has been intense. She got her final dose of this chemo on Thursday. Hooray! I'm glad to have the worst behind us.


The Bad News: Oh, I was really looking forward to a break. I kept thinking that things would relax once we got over this phase & into maintenance and it will, but not quite yet. Today Rylee had an appointment to check her counts & such. Unfortunately, pretty much all of her levels are really low. She was actually borderline for a blood transfusion today. It's all expected due to all the chemo, but it is also exhausting. with We have to be very careful to keep her healthy, which can become isolating. It also makes her sluggish and she doesn't feel well, which means more whining & wanting to be held & carried, which is a hard balance with a demanding newborn as well. It takes a few weeks for the chemo to wear off so to say, so even when she's not getting chemo, we're still dealing all the effects of it for weeks. This is true with cancer in general. If it's not one thing, it's another. For instance, Rylee had to be sent home on an antibiotic from the hospital to protect her, since they resumed with the chemo schedule. We have to hook it up to her line 3 times a day, every 8 hours. It takes a half an hour to run through. She is cooperative with this, but I feel bad to make her sit there for a half an hour, so I decided to use this cute little purse that a good friend sent her. I just put the medicine inside and she can carry on playing, holding it in her little purse. All we can do is make the best of our situation.

So, from here, we have to check blood again next Monday, then she'll have another spinal tap/chemo in spine on April 6, along with her now monthly shot of chemo. This will be her only spinal tap for the next 3 months. Like I said, it will relax...just not yet.