Tuesday, January 28, 2014

First Day Home

Today was our first day back...and it was hard, I'm not going to lie. It was so great to have my family all in one place but I think (I know) that each kid has been getting the only-child-with-special-gloves treatment the last week and they were both shocked and angry to find out mommy loves them both best. I think it'll take a day or two to return to regular. I hope.

Today was also a day of sorting and organizing. I made a kit for everything. My backpack kit (to be with me at all times) includes a thermometer to check Grace's temperature at any time, clamps should her picc line break, gauze and tape for the same reason and a mask. My medicine kit includes all of Grace's daily meds put into her dispenser...Oh crap....

I forgot to give Grace her nighttime dose. Thank God I was writing that or I would have forgotten. I've also forgotten to wash my hands so many times today- when we come in, when I touch her medicine, if any of us touch our eyes or nose or mouth.

Anyhow the third kit has Grace's picc supplies set up into daily baggies to help me keep that organized. I set up hand washing and hand sanitizing stations all around the house with reminders on every door. I called people to set up emergency babysitters for Luke since our roommate is back in India for a month. I packed overnight bags for each of us in case we have to rush off to the hospital again. I put reminders on my phone, calender and on the fridge. I have a thank you list, a Target-run list and a journal of every detail of Grace's daily life from what she ate to pain she complained of. My mother-in-law bleached every toy she could, she even disinfected the outside bikes and toys. My parents bought us a new HEPA filter vacuum and we bought an air purifier and a juicer, just in case the claims of the magic of beet and carrot juice are true.

In the end, it's possible that none of our preventive measures will really matter that much. The doctor told us that it's the bacteria in Grace's body that is the real enemy. According to my understanding of it, the chemo will lower her white blood cells. This will likely cause ulcers in her mouth, stomach and elsewhere. These ulcers will allow bacteria that exists in her body to enter her blood stream. Apparently, that's where the real danger lurks as her white blood cells are also her fighting agents and because they won't exist, there won't be much of a fight without serious antibiotics. But keeping germs and viruses away will keep her body focused on what it needs to fight the most, the cancer. (Hopefully all my doctor friends aren't cringing at my best-understanding synopsis.)

Needless to say, I'm beat. I hoping that having all these procedures in place will help the next days go smoother and my nervousness will go down. I don't really care in the end if it helps or not. To not do it is not an options for us. But I agree with my mom as I was going over the paperwork listing out all the symptoms to watch for and she said, "can we go back to the hospital now?"

Also too, for all of you who have signed Grace's change.org petition to ask Mattel for more "Ella" Chemotherapy barbies...thank you. There's not much I can do to make Grace's cancer go away but seeing everyone sign that has really lifted my spirits and helped me to not feel so helpless.


  1. Hey Melissa, I would be exhausted too!! That sounds like alot to remember to do, I already admired you for having 2 kids and a husband and doing all you do, and now all this. whew! So glad the petition thing lifted your spirits some. I know there is nothing I can do either (as much as I would love to) to take away Grace's cancer, but I do pray for strength for you and Chad and that you would have times of refreshment from the Lord. As well as praying for Grace of course. Love you sweetie!!

  2. Well written sweetie. I think you can skip the thank you. Maybe a corporate thank you on Grace's page will work. Everyone knows and understands and loves enough not to expect a thank you. Mom

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  3. Hi there, I am that someone giving advice.

    During Bone Marrow Transplant for our toddler we used glutamine powder to help coat the intestinal track to help relieve those painful ulcers from mucositis you write about. Glutamine treatment is thought to help prevent chemotherapy-related damage by maintaining the life of the affected tissues. CHLA supplied it while we were inpatient. We purchased a bottle at Whole Foods/Sprouts? cant remember. It was about $30. Quality matters, buy the better (more expensive one) Oh, I think it was Whole Foods, they helped us differentiate between the brands. It must be taken on an empty stomach to be able to coat it well. Nick took it first thing in the morning mixed with a bit of apple juice. I don't remember the exact amount of glutamine. I can look it up. It was measured in grams at CHLA. Looked like a teaspoon. We mixed it with 2-4 oz apple juice to just get it down. First dosage is right before white count drops until the ANC comes back up. It has a hit or miss result. It was worth it to try. He responded well to it. Some doctors say it will not work at all. Some say try it. It may interfere with some protocols so as with anything you gotta talk to your team. Food for thought.

  4. Kimberly, I really appreciate it. I'll be adding that to my list of things to talk to my doctor about. Are you Tina's friend? Thanks for the great advice.