LAST CHEMO!!!! (Week 26)

Today was a big day for us- Julia's last chemo treatment!  This journey that began almost seven months ago has hit another milestone.  We started celebrating yesterday.  I hesitate to say this is the end because there is still other legs to this journey and we still haven't had end-of-treatment scans.  But the more I thought about it, we cannot let this day go by without celebrating Julia's brave battle.  She deserves to celebrate every major step along the way.  So we did. 

Julia's appetite has been good the past few days (as usually happens at the end of every 3 week break), so we wanted to enjoy it while we could.  She and Daddy made cupcakes while Carter and I were at church and we had a yummy picnic lunch on Sunday.  The weather was absolutely gorgeous! Then we went to our favorite Japanese restaurant for dinner.  Julia devoured 4 bowls of soup and an entire steak filet.  It was definitely worth the trip!

Last night we made thank you cards for our doctors and nurses.  It was such an emotional experience.  We will still be in clinic every month for another year and then several times a year after that, but I wanted to thank them for all they do for us.  It never ceases to inspire me how well they handle everything they face.  They deliver cancer diagnoses to parents on a regular basis.  They inject kids with toxic medication on a daily basis.  They perform painful procedures regularly.  They see children truly suffering.  It takes a very special person to work in pediatric oncology and these people are angels to everyone they encounter.  They lose dear patients every single year.  I look at Nurse Nancy who has been doing this for over 35 years and just get tears in my eyes- wow.  Only by the grace of God.

This morning was a blur of activity.  Of course the one morning we have to be somewhere, everyone in the house sleeps in.  Carter gets up faithfully at 7:15am every morning, except today.  We dropped of Carter and made it to Brenner's- not too late.  It was oddly quiet.  With the flu outbreaks, they have restricted the entire hospital to no one under 18, except patients.  We got out of the elevators and the Arts for Life tables were gone.  Everything has been moved into the confines of the clinic now.

We checked in, went through triage and they called her back for port access, labs, and physical.  Everyone loved her purple hat today.  She and baby Mia dressed to match.

As soon as Ms. Diane walked in the room she said, "This part is really tough, isn't it?" She read my mind.

In the beginning chemo was such an unknown and fear for all of us.  It has been difficult, but it has become what we know.  It's been our new normal for almost seven months.  She summed it up well when she said, "While you're in treatment you feel like you are doing something.  The active drugs keep the cancer in check.  When you stop, it all becomes a waiting game and a risk."  We are taking another huge leap of faith and we can't see the next step in the staircase.  We trust where God is taking us, but we are dependent upon God's new grace for this phase of life and adjusting to another new normal.

We talked for awhile about the upcoming appointment schedule and scan options.  Protocol is a CT scan at this point to check for any spreading cancer or new tumor growth.  The oncologists are very cautious with their use of CT because of the intense radiation.  It gives them an excellent picture of everything in the body, but at the cost of high dose radiation.  One CT is the equivalent of 600 chest x-rays.  So we are going back to the previous plan of chest x-rays and chest/abdomen/pelvic ultrasound.  Everyone signed off on this after much discussion again.  I really don't like these decisions.  I so appreciate them being so careful, but I still hate these heavy decisions.  So we will return on October 29th for port flush, labs, chest x-rays, ultrasounds, and an echocardiogram to check on her heart function (from the chemo side effects).  She will be NPO so in the event anyone sees anything concerning she could be immediately sedated for CT.  It will be a full day.

The waiting is one of the hardest parts.  As much as I want to rejoice and celebrate the end, A part of me holds back.  I've thought about this a lot lately.  I have faith that her treatment has worked and am still so thankful it was found SO early.  We are truly blessed.  But I know how cancer works.  I know what anaplasia cells are capable of and have seen them rally back too may times- months later, a year later, two years later.  I feel like I have to prepare myself in my head.  I have explored all the options in my mind and had those conversations.  Ones I pray never to hear said out loud I had to say in my mind.  I think moms, especially, do this often.  We have to be prepared for whatever lies ahead and able to be strong for our children whatever happens.

Today was the first time Ms. Diane really expressed her concerns about anaplasia.  She has always been so upbeat and optimistic throughout treatment.  Today you could hear the doubts in her voice and the sentences that trailed off.  There just aren't any clean, complete answers.  We talked about her portacath, too.  They are usually left in place for at least a year.  Some kids go crazy with every port flush, so they sometimes take them out earlier in those cases.  In Julia's case, they want to leave it in at least a year.

Cancer is just so messy.  There is no finish line.  It is like a bag that stays with us.  We are starting to zip it up now, but we still must carry it with us.  In time we will adapt and even forget it's there sometimes, but it will always be.  The biggest blessing is that if we let Him, God will carry the load for us and hold our hands if we ever have to open the bag again in the future.  What an amazing gift.

We also talked about 'single kidney health' and how to manage for the rest of her life.  There are routine labs that will be checked, no contact sports or bike stunts, aggressive treatment of UTIs, pre-screenings for kidney function, lots of water consumption, limited use of pain relievers, caution with prescriptions, and no seatbelts across the waist- ever.  She goes back to the urologist on October 30th for follow up. 

Then it was time to wait for her labs to come back. We headed out to paint with Michelle and one of the other patients, sweet Lily. Her mom and I had a wonderful conversation about older siblings of cancer patients.  Her other daughter is 8 and it was great to share our ideas, concerns, and experiences.  In no time at all Ms. Diane brought out Lily's labs.  No transfusion today- YAY Lily! Then she handed us Julia's too.  This is the fastest we have ever gotten labs.  The usual wait time is close to 2 hours and today was under 30 minutes.  No one could believe it.

Her labs look good.  Her ANC has only dropped to 912 and her red blood counts are holding strong.  Nurse Tammy gave her her final chemo- zofran, vincristine, and dactinomycin.  It was all very surreal.  We said one last prayer for these 'drugs on a mission' and we were ready to go.  I couldn't believe we were out so fast.  Today was our shortest clinic visit ever- under 2 hours! It was time to go home already.  We handed out our cards and lots of hugs (and tears).

So now we have another couple weeks of feeling lousy from today's chemo.  She will have her labs checked next Thursday and then we head back to the hospital on the 29th- barring any fevers in between.  Carter is fighting off a cough and fever tonight, so hopefully we can protect her.  As long as she has a port, fevers will mean a trip to the hospital.  It takes several months for their bodies to recover from chemo and their lab counts to start to return to normal.  So until that happens, her immune system will still be compromised.