Welcome to Radiation

Well, it's been another very interesting day. I came home yesterday to a sick Carter and not feeling so well my self. I was fine all day with getting her chemo and meeting with radiation oncology, but having my other child sick was my tipping point for the day. I just ache to be there for him and haven't been able to and now he feels bad. Carter has his annual sinus infection. We totally saw this coming and he's been feeling understandably rotten the past few days, but when you've got one kid with cancer going to the hospital every day, getting the other to the pediatrician is well, pretty impossible, poor little guy :( I made him an appointment for late this afternoon so one more day and he'd get relief.

We arrived home from the hospital yesterday with quite a to-do list of meds, supplements, press n seal wrap, etc for today's adventures. By the time I finished I knew I needed to see a doctor. The kidney pain in my back was getting worse. (I know crazy irony isn't it?!) Turns out moms of chronically ill kids don't drink enough or use the bathroom enough- big surprise. Most hospital days don't even allow time for meal breaks. Crazy. Anyway, I called our dear friends to find a late urgent care in our area- there are none- bummer. Plan B: You know your true friends when they are willing to test your urine in their kitchen. You two rock in so many ways, but this truly takes the cake :) So, tests show time to get some medicine. Same awesome friends dropped off my culture at the doctor the next day. Thank you!! I'm now on cipro and hoping to feel better soon.

So this morning was hectic to say the least. Being at Brenners at 8am is no small feat. It all seemed so overwhelming. I had to wake both the kids one who needed to eat and one who couldn't eat. Carter was crying because he felt bad and I was leaving him, again. Julia was upset to learn she was going back to the hospital. We don't tell her at night because we don't want her upset at bedtime, but it breaks my heart to greet her in the morning and have her ask what we're doing today. I will cherish the days when I don't have to answer, 'going to the hospital'. At this point we are scheduled to go every day through the end of April.

I am also doing a lot of her prep meds at home now which makes getting ready a little more work. We were finally on the road, both of them crying and me on the phone with our various doctor's offices. After explaining our situation to the last one, I just lost it. This is just too much. Fortunately, I have no problem telling God that. I pray for strength and energy and endurance and peace and comfort, but I also tell Him when its enough and plead to lighten the burden. He wants us to bring it all to Him, the good, the bad, the sad, the mad- yes, yes, yes, and yes.

Carter was very happy to be dropped off at Annmarie's- finally a playdate with friends :) Seeing him happy made leaving much easier. When we arrived at Brenners God lifted a simple burden. Radiation patients are given a special access code at a private, FREE lot underneath the cancer center- so much easier than the deck and all the many elevators, with all the bags and stroller its a hike. Its the little things that matter. Then we headed up to pediatric oncology to get her portacath accessed. The press n seal wrap worked like a charm and removal was so simple. Thanks God (and Glad). Then it was down to radiation oncology. Everyone there is above and beyond helpful and sweet. It really means a lot. They offered to push the stroller and carry our bags, so I could just hold her- another burden lifted. We went back into the treatment room do meet with Dr. McMullen (Dr. Hot Dog- though today it was a bow tie instead), the radiation therapy team, and the sedation team. They were all wonderful and had gifts for julia when we sat down. The sedation team was amazing. They said the violent response coming out of anesthesia is a problem they are seeing in many children lately (same drug they've always used, no one knows exactly why), but they've found a blood pressure medication that counteracts it once you find the right dose. So today would be our experiment.

They all left the room to help Julia stay calm, then they started the meds. It took a double dose of anesthesia to put her under, but she didn't fight it. This is the point when I lose it. There is just something about seeing your child sedated, holding their lifeless body in your arms, and then laying them on the table. I am so thankful they allow parents to participate, but it just rips my heart out every time. I also find I cry the most when she's sedated. I think it's the only time I feel she's not depending on me and I need to be strong for her and it all comes out. This morning was particularly rough because of everything going on. I just want a day without treatments, a day to just play with my kids. As I was sitting there praying I remember saying, 'God, 7 days of morning like this is a lot to handle.' And almost immediately, the nurse came out and said we didn't need to come on Monday until 11am... another burden lifted.

I also feel like as hard as it was for us to receive information and plans about her treatment in such a spread out and pieced together fashion, it really has made everything much easier for us to handle. I think God knows its too much to hear all at one time. I am amazed at how comfortable we are with all of this in only a few short weeks- truly the grace of God at work. And it is a tremendous blessing to have His peace about each step of the process when it comes time to sign all the many consent forms.

The sedation team and radiologists were wonderful. They came out every 5 minutes to give me updates. She did wonderfully through all of it. The drug cocktail worked! Thank you God and thank you all for praying... another huge burden lifted. They were finished around lunchtime. They had me come in when she was waking up and take her out with me. Within 15 minutes she was ready to go home feeling calm and happy (though still slightly limp and sedate), so much better then the last time- a complete turnaround... another huge burden lifted. Here's her new radiation tattoos for precise positioning each time. (You can see how well her scar is healing, too.)
We were ready to leave the hospital and the sweet tech pushed our stroller and bags all the way to the car for us so I could carry Julia... another blessing. We left feeling much more encouraged then when we arrived. Julia was peacefully reclined in her car seat watching Little Einsteins and the sun was shining on a glorious spring day. It's so sweet to hear her in the hospital she always asks people, 'Where did spring go?' It's been so long since she played outside that she worries its left. She takes special notice whenever we're outside of the sky, clouds, flowers, trees, and birds.
When we picked up Carter he was happily riding his bike with Lily and Julia finally got to play with Claire... another prayer answered. We had a very calm afternoon with friends. It has been so long since we've been around anyone. After a few more appts this afternoon, we are all on medication now (our house is looking more like a CVS everyday!) and hoping for a healing, restful, and joyful weekend.
Her radiation simulation went well. We were not given any more details. They are still in the information gathering stages. We'll know more next week. Thank you all for your devoted prayers. They mean so much to all of us and truly carry us through our days, especially mornings like today.