Tuesday, March 24, 2015

Walk the Line

These days I feel myself walking a line. One one side is a normal childhood for Emma and on the other side is a safe, sterile, plastic bubble life. Before Emma was sick I was a teacher and I hated helicopter parents. I wanted these children to live and experience for themselves. To run and be free and touch everything, to learn about the world through living in the world. I parented this way too...then Emma got sick. Suddenly I became superhuman with the ability to see germs everywhere. Everything was dirty, everything needed to be cleaned before Emma touched it, every well meaning person in public was just an incubator for disease. The disease that might put Emma in the hospital, the disease that might kill my immune compromised child.

Sister dress set, the only way to chemo!
We spent about a month passing illness around from one person to another in our home. Emma was in and out of doctor offices and the hospital as well as the ER. This week she was much better and her numbers were good but I found myself in a compromising position...do I let her play out in the world or do I keep her home and protect her from getting anything? As most of you know we follow other cancer warriors, this week our friend Sophie got news that her tumor has become extremely aggressive and was sent home with hospice. I realized that Emma has just this one life to live, however long that is we do not know but I want her live it. I want her to have happy memories during this time of her life and hopefully as an adult she looks back and can say that she had a good childhood despite cancer.

So we decided let her live life outloud as long as numbers are high and we take sanitizer with us. She went on a Mommy date to her first movie on Sunday, we saw Cinderella. She did really well for a not-quite-4 year old! I am impressed with how well she did. Then yesterday happened...

chemo buddies
Yesterday chemo could have had better news, Emma's numbers are cause for concern and while we were there Daddy called us to say Gracie had a fever of 103 at home. The Oncology team and I had a long conversation about what these constant trips to the ER for fever could mean. She has spiked a fever over 103 five times the day after chemo since Nov. It could be that she keeps picking up viral bugs or it could be that she has a minor infection in her central line. If it is the later she she keeps spiking high fevers they might want to subject her to another surgery to switch out the line. I personally think that the fever is Emma's way of fighting the chemo, each person reacts to medicine in different ways and this might just be Emma's reaction. The main Oncologist suggested pulling her out of day care and preschool and I just laughed...my girls have never been to either! We homeschool and they rarely have a babysitter and have never been in daycare. Now I am back at square one, does anyone have a plastic bubble we can use?

Emma got news this week that KABC friends of ours gifted our family a night at the Grand
Californian at Disneyland! That combined with a generous family gift made it possible for us to book a birthday trip to Disneyland for Emma & Gracie's 4th birthday on May 1st! If anyone has any fun ideas of things to do while we are there please let us know! So far I have breakfast with the characters and appointments at the Bippity Boppity Boutique for the birthday girls planned. I really hope that we can make this a magical birthday for Emma and get her twin sister Gracie some much needed fun that centers around her for a change. A huge thank you to our friends who helped make this possible.

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