Posted 2015-02-09T11:19:00Z

Day 21- HOME

21 days. 21 days after we dropped the boys off for school and went in for a simple scan of what we thought was random cysts. 21 days after we left our house a mess and didn't realize we wouldn't be coming home. 21 days after everything felt normal. And then finally...

We were going home.

A giant stack of papers in hand, we excitedly crammed the van full of all our stuff, and then made a mad dash across town to grab a medicine that was only available at one specific pharmacy (and they were closing only 10 minutes after we left the hospital). As I ran to the back to try and get the prescription in, I realized our pediatrician was there too. Our pediatrician from the hospital we just left. Who was worried we wouldn't get to the pharmacy in time for this medicine (the most important one), so he came and waited there to make sure we got it.

When I got back in the car with my arms full of bags of meds, it all finally hit me. The high of the last several days wore off and everything came crashing in and I sat there sobbing and clutching Brian's hand. Every day that we had been in the hospital all I wanted was to go home. Now I was finally getting to go, and I was terrified we couldn't handle it. There was no team of experts with us anymore... just us.

The last time we were home with him, we weren't caring for a baby with cancer. He was just our baby.

We were sent home with several huge boxes of gloves, masks, cleaners, and 5 or 6 different medications we have to inject into his PICC line and feeding tube multiple times a day. His feeding schedule doesn't allow any of us more than 2.5 hours of sleep at night, as we are going back and forth between feeding tube and nursing. And we're constantly hovering over him with a stethoscope or thermometer. One extra fun side effect of the tumor shrinking is non-stop sweating. So, he constantly feels like a reptile. A very very cute little reptile.

Our boys have been thrilled to have us all back together, and so much of our chaos feels usual and normal again. Our oldest son was especially excited to have everyone home, and he couldn't wait to throw one of his super hero costumes to show his baby brother. (On a side note, a super giant thank you to all who have been sending tangible love to our boys. They are in love with all the superhero-ness that is part of their life right now.) He has been such a huge help and loves to check the baby with the stethoscope and help give him all the medications.

He's making remarkable progress. Our team told us they were shocked at how quickly he recovered from being intubated. We found out that they now believe he in fact does have the 4S stage of Nueroblastoma, as the portions that they believed to be growing on his bones now appear to be subcutaneous. Additionally, they found no cancer in his marrow. His evaluations with his physical therapists went extremely well, and we are armed with 'exercises' to do with him throughout the day to continue and help his physical development. The speech therapist believes his vocal cords and throat are healing well, and we continue to wean him slowly off of his feeding tube and incorporate nursing for longer and longer periods of time (always watching with a slight amount of panic to make sure he isn't vomiting and aspirating!) This has just been such a phenomenal week for little Red.

Round 2 of chemo starts next Thursday. Then a month later we'll be back in for scans to check his progress. More than likely that visit will be another intubation and at least a couple days in the hospital, but we're hoping the tumor won't be around enough to be causing any breathing issues. Our hope is that we will see enough progress from the two cycles of chemo that we can go into observation/hibernation mode after that point. Keeping him safe and just watching the cancer with regular scans. Hoping and praying there are no negative long-term affects of the treatment. Praying his kidney function returns. Counting the minutes until we can say that he's cancer-free.

When that day comes, I'm throwing one hell of a party.

In some ways living with cancer isn't living... it's a series of coping mechanisms. We're struggling, and adjusting, and I keep hearing my Dad's advice running through my mind 'One thing at a time. One step at a time.' And that's exactly what we're doing. Just making it to each next moment.

This song for today.

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Day 21- HOME

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