We were back at the hospital at 9am this morning. Julia couldn't eat or drink, but never even asked. It is totally God that she handles that so well. Any other morning breakfast is the first thing she asks for downstairs, but somehow she just knows. We've become old pros at this whole process. We put on her emla and Glad wrap. She said, 'Mommy, you're really good at that lotion." We've got our hospital backpack always packed and ready. The drive is so familiar now. We know to park on the purple deck for the easiest walk to the hospital. And we're headed up. She's always excited if the elevator is empty and she gets to push the buttons...
After triage, Dr. Wofford came in to do her exam. She was pleased with how well Julia was doing. Her easier week this week lets them know her body is tolerating the higher doses of vincristine and adjusting. We talked about her scheduled scans. She said the current research shows no significant differnces in x-ray and ultrasound versus CT. The CT comes with substantial radiation which they want to avoid whenever possible. I was so happy to hear this. Survival rates in pediatric cancer have gone from less than 30% to almost 80% in the past 30 years. Now that treatment regimens are established it seems they are spending more time on long term survivor research. Every discussion we have had since her diagnosis has included the future and the impact on her long term health. It is such a delicate balance attacking the cancer with enough aggression to prevent recurrence, but at the same time minimizing permanent damage and secondary cancers.
Julia was great for her chest xrays. She sat there on that box looking so stoic and small in her ladybug apron, holding her arms abover her head. They were surprised by how cooperative and compliant she was. That's JuJu, as long as you don't have to remove surgical tape, she doesn't say a word or make a sound. Then it was on to the ultrasound.
The tech came into the hallway to take us in. When I walked in the room, time stopped for a minute. This was the very same room we were in on March 25th, just 2 hours after the tumor was initially found. We where living in a whirlpool then with no idea where or when we would stop spinning. As I laid her on the bed and sat next to her I couldn't help but reflect on how far we have come. As life-changing as cancer is, it is such a part of us now. The tech asked me her diagnosis and I rattled it off the same way I would her name. She was great with Julia. She actually has 4 kids of her own, 6, 4, 3, & 1- whew!
The scan took about 45 min. They looked at her heart, lungs, stomach, intestines, spleen, 'empty' left side, right kidney, and bladder. Julia just laid quietly on the table. Sweet girl. Everything looked good. I don't know that all the doctor's have reviewed it and signed off yet, but so far no red flags. Praise God! I feel like this was our first checkpoint to cross and we made it.
Then we headed back up to the 9th floor to wait for her labs to come back to see if she was able to have today's chemo treatment. She finally was able to eat at lunchtime...
Then we painted with Betsy for awhile and headed into the playroom to play dollhouse and kitchen.
We did a lot of waiting today. It took about 2 hours for her labs to come back after lunch. We were the last patient left in the clinic.
They finally got the go ahead at 1pm for her infusion. Her white blood counts were 2000 today. Anything above 1000 and they proceed with chemo (Normal is 6000-14000). All her counts dropped this past week and she is still neutropenic, but nothing 'dangerously' low. The cumulative affects of the past 10 weeks have taken their toll. This is the reasoning behind the spacing of these remaining treatments. She has all her strongest drugs and doses left, but will only receive treatments every 3 weeks, to allow her body the best chance to recover in between.
They hooked her up to the IV pump and we cuddled on the couch for the next hour. Seeing this drug brings the realities of chemo to the surface. It has the telltale 'hawaiian punch' color that dyes their tears, sweat, and urine red. This is also the drug that caused her hair to fall out. This is the drug that can cause heart damage and future cancers. This is our 'insurance policy' against those nasty anaplasia cells. This is the drug we are learning to live with. Today was efinitely easier than the first time. Though as I lay with her on the couch, the nurse came to disconnect her and had to 'suit up'. The bag you see on top of the pump is all the gloves and disposal bags that have to be used by anyone who touches the bags, tubing, or patient. And we're running this into her heart?
She did great with everything. As the nurse was removing her port acess and putting on her bandaid, Julia said, "I just love this doctor's office." She makes them tear up every week! I must say though she will never look at any future doctor's office the same. Her first question will be, "What amenities and services do you provide?" and "How good is your ice cream?"
She was happy to be back home and had some play time with Allison. They were so cute! She wears her heels almost everywhere she goes these days. Even when she's a cat...
It's been a long day and we are all very tired. Julia especially...
So it's off to bed. We were actually all in bed before the sun went down tonight.
Sweet dreams!
Welcome to the world little one. We are so happy you're here and healthy. We praise God for the blessing of new life and hope for tomorrow.
