Consolidation: Week 1

This was the first week of the second phase, known as Consolidation. This phase is another 29 days where the goal is to focus on killing any remaining leukemia cells. Induction, phase one, is to get Levi in remission - which he is. That said, with leukemia, you may still have 0.01% cancer cells so the treatment must continue. For 2 1/2 years.

In between phases, Levi gets a week "off" -- basically no chemo to allow his body to recover a little. After stopping the month long steroid (dexamethasone), Levi started to act more like himself, though he did have challenges. He had to work hard to get his strength back as dex weakens the muscles. An example, he had to crawl upstairs instead of walk. And yes...we made him crawl. We are not mean...Levi just has to fight for the things we take for granted right now. The crawling turned into pulling on the railing and now he is walking. Small wins along the way.

At one point last week, Levi was having such a good week (compared to previous ones) that we said it's almost too good to be true...and it was.

Last Saturday, Levi was running around with Drew and playing...that night he seemed 'warm' so we took his temp. It bounced around from 99.9 - 100.8-ish. It was all over the place but Levi seemed fine so we put him to bed and waited it out. That morning, Levi still had a 100.1 temp so I called the doctor and he was admitted to the hospital. With a port (i.e. foreign object in your body), any 'bug' will attack it and essentially infect the line to his main vessel. This was our first time going to the hospital 'unplanned' so I didn't pack a bag or put on numbing cream for his port. I assumed he'd get an antibiotic and we'd head home...instead we were there for three days. Oh, and they had to access his port without it being numb - major fail on my part. We learn as we go. Luckily, he recovered well and all is well.

Which takes us to this week...so we got home Tuesday from the hospital. Drew's Mom and sister (Gretchen) brought Levi home because I was getting a root canal. I had no plans to get a root canal; however I had been in so much pain with my mouth while we've been going through Levi's diagnosis and treatment, I finally went to the the dentist and learned I had nerve damage in a tooth. I was thrilled as you can imagine. And then Ellie started feeling bad again this week...as you may recall, she was just getting over double ear infections.........and today, we confirmed she still has an ear infection and need to discuss tubes now because this is here 6 or 7 infection in a year. Oh! And she has hand, foot, mouth virus ----- pile it on!!!! We are well aware there's a black cloud hanging over our family....I've cried a ton this week. It's a bad week. Oh, one more - after I got home yesterday with Ellie from daycare, I received an email that my FMLA was denied because I didn't provide proper paperwork (which I did complete and fax over).....so another headache to deal with........nothing's easy right now. I had a full plate prior to August 26 when Levi was diagnosed. Now, as dramatic as it sounds -- I feel like it's survival mode for our little family. I guess for Levi that certainly holds true. Poor baby boy.... God, I love him. I really love Levi. He's the reason I just shut up and suck it up and power through. He's the reason I can manage. He's my fighter and my inspiration.

Wow....hello rambling Julie.

Okay, anyways, here's Levi's numbers from Friday:

• WBC: 4.4 -- little change from last week
• HGB: 7.7 -- this is low; however his numbers are improving so no plans for another blood transfusion as of now.
• Platelets: 413 -- up from 208 last week - still no concerns here
• ANC: 1.7 -- drop from 2.4; however we expect his ANCs to start dropping with the increase in chemo and coming off the steroid. We were told this number is still high enough to go and do...

Other than that, Friday, Levi had another LP - chemo injected into his spine. Never fun, but totally necessary because those smart leukemia cells run and hide in the spine.

How are we holding up? I won't speak for Drew but I had a rough few days (if you couldn't tell from above). I am tired all the time because it seems like someone is always crying in our house. I am juggling work with all of this. I am trying to feel happy when really I don't at times. I am trying to pause and be grateful and that's hard. I am fearful every time Ellie is sick because what if she gets something like cancer too ---- there's no guarantee. Levi's cancer came out of nowhere...he was completely healthy 3 months ago. I see women with their cute, healthy kids out shopping and I get a little angry inside... because that was my life and now it's not. I am the woman with the crying one year old daughter who needs tubes...who probably smells because she went for a #runforlevi but has no time to shower and last washed her hair 4 days ago...and really needs a pedicure...and barely puts on makeup because there's no time and what's the point, really?

When things are tough, you must be tougher. 

On his new scooter

At clinic Friday

Sick Ellie at the doctor