Welcome Wagon

On Kris's insistence, I had to be nice to the neighbors this weekend. A new little baby was admitted to the ward, and Kris thought the mum looked shellshocked and I should go to talk to her. Lots of women welcomed me when we first arrived and we decided it is my turn to help out. I drew in a deep breath and rapped on their door. The scene that awaited me was truly breathtaking; a beautiful girl with long golden locks sat cross-legged on the crib, breastfeeding a tiny baby. The setting sun created a halo around them - it was like a living, breathing Madonna and child. So naturally I became tongue-tied and awkward. She was very relaxed and tells me they are (not surprisingly) from Nelson. The baby has a tumor on her kidney and all the scans and such would be performed after the weekend. Total newbies, no idea what is going on or what is going to happen, so I start rambling about my experience and my sick baby. What the hell was I thinking? That poor girl. Their story is already so different from ours as we took two weeks of critical care in ICU to be deemed stable enough to be on the ward. They skipped that step entirely! I finished every sentence with "but everyone's case is different" and hoped that would ease the fear that was slowly creeping on her face. I am not a welcome wagon. I don't think I will be doing that again soon.

Since then I have been hiding in our room, trying to keep this girl from seeing Eleanor in all her distressed glory. She had a really rough weekend. Her mucousitis flared up, which means the lining of her digestive tract has been eroded by the chemo and she has meters and meters of inflamed tissue/sores. I have been sitting by her side, suctioning out gobs of mucous to prevent her from aspirating. She is on a morphine drip to control her pain and Benadryl to control the side-effects of the morphine. She has had brief periods of consciousness and she spends them crying or tripping out on her toys. It's pretty horrific, and is the exact opposite of what a newbie should be seeing. Today, however, her neutrophils are up from 0.00 to 0.02 and the secretions are subsequently improving. Just a few more days of misery and she should start feeling better. Maybe then I will try again to be nice.

Numbers

Today is all about numbers. Our attending GP was quite chuffed about Eleanor's hormone levels from her last test. She handed me a piece of paper with all the numbers from all the tests since being admitted and while it may just look like a bunch of numbers, it brings me incredible joy. Basically, her levels are lower than ever (yay!) and therefore closer to normal baby hormones. While the levels dropped dramatically since removing the tumor, there is a clear rise between rounds two and three. This is not good, but it shows that the chemo supressed the cancer initially and it pinpoints the moment the chemotherapy stopped working. It also means that the cancer growing in her lungs is still acting like the original tumor, and is secreting hormones like her adrenal gland. That kind of blows my mind. Is it weird that I find the nature of my daughter's cancer fascinating?

Another number we are focused on today is her temperature. After 36 hours of discomfort, she spiked a fever. It's the first time she has ever had one, cancer or no cancer. They drew some blood for cultures and put her on antibiotics right away. She also got some Tylenol paired with her morphine, and I am told that this is a very effective pain-reliever. Now we just wait and see if anything else develops. Poor little bear. She is definitely struggling, but according to her previous numbers, her white blood cells should start coming up in 3 or 4 days and she will start feeling better. Fingers crossed that she doesn't have an infection!

Shameless Idealist

Last night was eventful. Every hour, on the hour, Eleanor's poor little body would wake her up and eject everything from her system. She got a dose of Gravol at 3 and we stopped the continuous feeds. That gave her about two hours of peace. I begged the nurses at shift change to give her some relief, but they had to wait for the doctors to show up before giving her morphine. She's been quite a bit better since then, but she still can't tolerate any oral medication. I hate having to resort to narcotics to console my baby, however I am glad she is more comfortable. She is now having a snooze next to me and it is nice to hear little snore.

Before all this drama last night, I read a case study of children under the age of 20 who had ACTs (adrenal cortical tumors). It's pretty crazy stuff, but it was interesting to learn that of this super rare condition (affects 0.3 in 1,000,000 children of non-Brazilian decent), Eleanor is actually the norm. It tends to strike female babies under the age of 3 and is usually present on the left side. I also learned that it is most likely a genetic mutation, but we won't have confirmation on that for a few more weeks. This study looked at the staging and prognosis of children with this condition and was essentially a death certificate for my child. Her tumor was too big, her Cushing's too pronounced, her metastasizes too rampant for her to survive.

So I am choosing to be a shameless idealist.

Shameless idealism is one of our core values at Free The Children and was emblazoned on our staff shirts at We Day. We are an army of warriors, out to better the world. We inspire young people to join our cause and change their way of thinking. We challenge them to be the change they want to see in the world. The Merriam-Webster dictionary describes idealism as a theory that ultimate reality lies in a realm transcending phenomena . I want that now. I want to put aside all negative thoughts and throw myself behind the cause of Eleanor's survival. So what if her odds are around 15%? Why can't she be one of those 15% that pull through? Someone has to survive this; why not her? She has done so well so far, I believe she can do it.

I'm going to hold out hope that my little girl will live.

It's been a very busy week for us. I have been very taxed emotionally and have been processing lots of clutter in my head and heart. I'm very lucky to have had my mum in town and the Red Cross volunteers helping out while I purge myself of icky feelings. Purging has come in many different forms; I ate super spicy food; I cried at a movie; I bitched to my friends and I went for a swim at Kits pool. Swimming is the best, but that pool takes it to a whole other level. For those of you who have never had the joy of swimming in this pool, allow me to indulge you. It is a salt water pool over 125 meters long and is perched above the ocean. It has a clear view over to the North Shore Mountains and it is heavenly. I felt very Mad Men-esque as I exhaled all the oxygen out of my lungs and sunk to the bottom of the pool. I allowed the water to engulf me, cleanse me and rejuvenate me. I felt so much better afterwards.

Baby girl's white blood cell counts dropped today. Part of the reason of my funk earlier in the week was because her counts were so high, just like last time, and the last round didn't touch the cancer. I drew the conclusion in my mind that healthy baby = healthy cancer. I have since been told that this is not how it works, and her high blood counts mean her bone marrow has not been exhausted by the chemo. I asked if we could up the chemo and the doctor was vague, but she did say we will be able to go home between rounds again! And this time it might be for a whole week! I would love to get home and get my life sorted. It's very difficult to keep on top of everything from a hospital room. I wonder if I could hire a personal assistant and pay them with Monopoly money...

Anyway, Eleanor is doing great despite her immune system being compromised. She's happy and eating and working hard at sitting, but is very much interested in her feet and face-plants a lot. She is very weak. It will be a long, long time before she crawls or cruises or locomotes in any real way, but it's just me that gets upset about it. She doesn't mind at all! Bless.

Round 3 complete

The wireless network is down this weekend, so I am writing this on a computer. How novel! It means that I am away from my baby, which makes me increasingly nervous. I am going to make this short.

Eleanor has been spectacular in her response to the chemo or, as her godmother put it, her big girl juice. All the doctors and nurses are nodding their heads in approval, which is nice to see. Her nausea is under control and she seems in good spirits. She's still eating and breastfeeding, but not huge amounts, so she will be supplemented with breast milk feeds through her NG tube. Yup, I'm still a Nazi about breastfeeding! I think the staff are getting sick of me as I am always requesting bottles and caps, labels, pumps, pump kits etc etc. It would be so much easier (in their eyes) to just give her formula. Oh well. I'm pretty easy-going for most things, so if I have to stick my neck out on this one, I will!

I thought I would add a photo (because I can!). Here is one of us before she started her chemo treatments.

Good night!

Braveheart

Well, she survived the doxorubicin. She's so tough. There were some irregularities with her heart which concerned one doctor but not the other, so an ECG was taken. Everything came back normal, well as close to normal as Eleanor is going to get, and she is happily resting.

I had a brownie. It was as delicious and satisfying to my soul as one could hope.

Only one more scary day to go!

Doxorubicin Day

Doxo is being administered right now. We didn't have to move to the cardiac ward, but she is hooked up to telemetry. It'll take about an hour. Our nurse is waiting in the room with me; the babe is sleeping. She's had a big morning with daddy.

I'm a little stressed, so I am catching up on my celebrity gossip. Can you believe Kim Kardashian wore white to her rehearsal dinner? Will her Vera Wang wedding dress be white as well? Oh, the suspense is killing me! (Please insert overly dramatic eyeroll here)

Hmmm...maybe I will get a brownie from the fridge...