Coughs, Colds, and Cancer

It's been one of those days. Definitely one we will never forget.

9:30am Julia wakes up, happy, well-rested, finally clean, and ready for breakfast.

9:40am Billy calls. Carter has a cold and is pitiful- doctor or no doctor? We decided no, just a cold. He is pitiful the first 2 days when his throat itches and nose hurts. decided on cold medicine.

10:00am Julia's breakfast in bed. I loved when she said, "Look Mommy they brought me cute, soft toast." She's feeling pretty good today. We give her a dose of codeine hoping it will help her get up and around.
10:30am Her little friends arrive and the smiles come freely. They have told us she needs to be around her friends and to take extra precautions/screenings/etc., but to find ways to keep her days normal for her.
We take her to the playroom. She walks there herself- first time post-surgery! She has a cute little limp on the left side where the kidney and tumor were removed. Julia you amaze me!
10:40am Dr. Pranikoff and his team come in with a computer printout. Pathology results are in. It is definitely a stage 1 Wilms' tumor. There was a section with anaplastic cells that will be investigated before deciding definite course of treatment. Julia is free to go as far as surgery is concerned.

11:00am On my knees praying that we choose the right next steps and praising God for His faithfulness.

11:30am We eat lunch and wait for oncology. I have to say the hospital food at Brenner's is really good. Yay Sodexo.

12:oopm Julia says good bye to her friends. This was sad because she thought she was going to lunch with them. Apparently she knows its Wednesday- that's what we always do on Wednesdays.

1:00pm I put Julia down for her nap and she instantly closes her eyes- so peaceful. Oncology is waiting for us outside the door. This is one of those moments you pray you never have as a parent. How do doctors sit parents down and tell them there child has cancer. Well, unfortunately, now we know. First of all you all walk around trying to find an empty meeting room where you can close the door. I'm just praying for God to hold me up and that we are doing what He has planned for her. We end up in the family resource library/closet. One of the attending physicians talks to us with a resident beside her and 2 med students taking notes. It all feels very surreal. They say all the things you hear them say on TV. They too were very hopeful. As they all say this is a good one to have, well if you have to be in this department in the first place. Yet another reminder that we are in a whole different world now. They gave us the overview....

Essentially we are awaiting the confirmation from the Wilms' tumor board to confirm diagnosis and treatment plan. They also hold off on the first chemo treatment until 2 weeks post surgery to allow complete healing. It is the goal to do all her chemo as an outpatient, but we will have to wait to see her reactions. Any fevers during this entire process will result in hospitalizations for IV therapy.

Then we are given a tour of the clinic where we will come for treatments. Again, surreal. Every time I've been in a children's hospital and seen parents of cancer patients my heart just aches for them and I cry every time. Now I am one of them. God definitely gives you the grace to deal with it because I don't cry all the time. I can't cry in front of her and surprisingly I don't. When she asleep or sedated I do cry freely. It does amaze me the way God enables you to go through it. I have noticed at times I get frustrated now. Every one in the hospital knows you are one of 'those parents' and they look at you different and look at your child different- compassionately, but different. And you just ache to be normal again.. It's a strange place to be.
1:45pm I go back in the room where Julia is peacefully sound asleep. Billy goes to read and I lay down to pray and then sleep. Thankfully deep sleep comes really easily.
2:30pm The Nurse Practitioner wakes me up and says we need to get ready to go home. I was dreading this moment, surprisingly. This hospital has been such a refuge for us and a place to cope with everything. The thought of leaving is almost too much to bear. I get Billy and we start packing. It is beyond me how we got so much stuff in here in one week. It took Billy nine trips to the car to get it all out. It was no easy feat when you consider all the elevators, towers, and parking decks. Julia peacefully slept through it all. Then we got all our discharge instructions, paperwork, appointments, contact numbers, and prescriptions. By now I'm feeling ready to go and excited for Julia.

4:30pm We let Julia wake up and excitedly tell her we're going home. She's not interested. She was adamant she's staying. She did not want to get out of the bed. She got upset when we tried to pack up her things. We tried to entice her with things we'd do at home and things to look forward to, but no luck. She is insisting she wants to stay. It took a lot not to cry because I feel like I can relate to what she's feeling. It shows you just how amazing the hospital is when a 2 year old wants to stay there. She has also had my undivided love, attention, and affection- which brings up even more emotion because the past few years with my health challenges have really taken a toll on my time and relationship with Julia. It was hard, but we finally convinced her to go. She had to have the surgical tape and seal removed from the outside of her port which she hates. Tape removal is the worst procedure for her, but she was finally free with the promise of another bandaid on it.
5:30pm As we walked out she finally started smiling. She was eager to push the buttons and did get excited when she saw our car. It was a strange experience being outside after being in here for a week. We stopped to get her medicine on the way home and it's true what they say about everyday things being different after something like this.

6:00pm Back home. We unloaded only the necessary bags. Poor Billy has a horrible cough and his health is going downhill rapidly. Shannon brought us dinner which was such a blessing and things felt somewhat normal. Julia folded her hands and said the blessing just like always. Then we started with the requests and complaints that accompany most meals in our house. We finally ate and Carter started complaining about his cold. I spent some time cuddling with him on the couch, gave him a much needed haircut, and took them both up for a bath. Poor Billy is fading on the couch and coughing horribly, so I sent him to bed. My mom and I continued trying to get things where they need to be. This is going to take a few days.

7:00pm The bath was good for about 5 minutes then Carter wanted out, Julia did not like getting her stitches wet, and they both want me to get them out and dress them. These are the moments I'm trying to get use to because they are so different, but so much the same. I get Carter settled and playing a game with Mimi, carry Julia to her room- she's reached her walking limit for the day and is getting uncomfortable. I take her downstairs to watch TV on the couch and take her medicine so I can get Carter to bed.

8:30pm Carter is snoozing peacefully. We had some good cuddle time. It was nice to talk to him, just about normal stuff. We've spoke with ChildLife, but are going to hold off a few days on talking with them. Chemo is not scheduled yet, so we will enjoy this brief honeymoon period and try and find a new groove before the big talks, unless questions come up. Mimi is cuddling with Julia downstairs.

9:30pm Take Julia to bed just like any other night. She seems happy to be home, but wants night lights now after having so many lights in the hospital. And yes, she still sleeps with the rolls of surgical tape.

10:30pm She's still singing and chattering in her bed. I check on her and she's peaceful and said she doesn't need anything. I would love to know what she's thinking about and how she's processing all of this. It astounds me when I think about what the past week has been like for her. I just pray she's hearing God's voice during this time and feeling his wonderful peace.

And now is my time again to process all that has happened today. It was a day full of contrasts. All the normal things now blended with all the cancer-things and stirred together into this crazy mix that we now call life. I will definitely be putting to use my practice in abiding....