Oh, Nora.

She did it. She finished her 8th round of treatment 7 days ago. Nora has proven to be a force of nature and a God-given miracle, as she finished her 29th dose of chemotherapy like a BOSS. She makes me wonder how she can possibly be so strong? So full of life and love and continue to bring me joy. She has suffered tremendously in her short life so far, and yet, she still brings me out of my own darkness. But, even in the strength of her fight, some days and weeks are just harder than others.

Front Porch Pic

I have been pretty quiet about life after round 8 so far for a few reasons. It hasn't been easy. Nora, while still pleasant and a complete joy, has had lots of trouble sleeping. She can't seem to slow down. She is extremely tired, but she is restless. She just can't get comfortable and barely naps 15 minutes/day. It is truly and utterly exhausting. (And this is coming from the mom of Heidi, who slept no more than 4 hours at a time until 11 months of age). I have never felt this kind of full-body mental, physical and emotional exhaustion (well, not since late February, at least). Minutes feel like hours everyday, as we are all running on complete empty.

Finally, my own sign!

Wagon rides are more fun when your IV pole clips to the back!

Been waiting to read that "plan" for 6 months...

Nora also pulled off part of her broviac dressing on Sunday. It is a long and drawn out story, but the climax was definitely me, wearing a mask and sterilized gloves Sunday night, while changing her torn dressing on her bedroom floor- breaking open chlorhexidine swabs and nervously applying the new bandages, as she screamed. Not sure where I thought I was going on Sunday, but the only reason I know I had put on mascara was the black residue left on the mask from my sweat and tears. There are no words to describe my desire to keep Nora infection-free the next few weeks. Adam and I could literally be considered lunatics when it comes to the number of times her temperature has been checked the past 5 days. (My guess is that she has literally had the temporal thermometer to her head a minimum of 250 times since Sunday afternoon). I'm not even ashamed.

Playing with Logan & Garrett

Nora's new doctor mentioned during her clinic appointment that her urine analysis has still not come down to a normal number.
**Basically, her urine has been collected during each hospital stay since February. It is being checked for 2 marker numbers (that are driven by her tumor mass). HVA and VMA are the concerning levels. You and I would have normal levels in the 20's or 30's, give or take. In February, Nora's numbers were over 100 in each area. They immediately started to decline when treatment started, but they have not gotten below 50, even with the incredible shrinkage in her tumor size. Her new oncologist, Dr. Bukowinski, said it is unusual (never something you want to hear). He said final scan results will tell the team more information, but his concern at this point would be that Nora's tumor is a more mature type of mass. Maybe it is secreting more of these acids, even at such a compact size, because it is stronger than most neuroblastoma tumors. Ugh, my sweet baby girl. When will you catch a break?

Again, because the scans should provide more information, the team will make a decision about surgery once everything is reviewed. A surgeon will be included in the discussion, and as much as I have wanted that dirty thing out of there from the beginning, the thought of surgery is very scary. I know my girl is strong beyond her year s. I know she can do anything, but I am tired of watching her fight a fight that should never have been hers to begin with.

Leaving the hospital @ 3am Saturday morning

I am selfishly tired of the bi-weekly nurse visits and lab calls, the shots, the dressing changes, the bookshelf filled with syringes of saline and heparin, zofran, alcohol wipes, caps, gloves, masks, hypodermic needles, stat locks, tegaderms, and leftover equipment from her antibiotic drip. I want to look at board books and stuffed animals, and fingerprints on those shelves. I want to change diapers, not port dressings. I want to give her a bath in the tub and take her for a quick dip in pappy's pool just once before the leaves fall.

Playing nice.

As relieved as I am that we may very well have just survived her last EVER chemotherapy treatment, I am also a wreck inside. I am paranoid beyond words of another infection creeping up. I am terrified of her scan results and what they might mean. The days literally creep by at a painful speed. No one needs to tell me the old adage "there's no point in worrying." Trust me, I wish I could just jump into someone else's skin for the next 2-3 weeks and live life without the burden of worry. But that's not likely to happen. So, if you need me, I'll be the one taking my daughter's temperature in the living room. Then in her high chair. And then again on the changing table. Then in Heidi's room, while she is dodging me behind any toy she can find.

 I do trust in the Lord. I have faith in Him and in His timing. I know this is part of His plan. I just wish I understood it. I wish I could make some kind of sense of it all. As each day passes, I am reminded to hang tight to my faith and to the captain of this ship. He will see us all through to the end. He is love & He is life.

Movie nite with snacks!

 

Just a quick video of Miss Nora walking into her last treatment. Just like daddy said she would...