Heather and I really see now that our time in Waikiki was completely focused on providing Carmen whatever she needed to heal. It is also clear that we had created a bubble that was helping Heather and I heal too. It was almost as if we were suspending reality and hoping to wake from a really bad dream.
Now that we are home getting things back to "normal"- going about daily life, running errands and returning to work the reality of Carmen's Leukemia has been brought to the forefront. We are coming to terms with the fact that what we thought was once "normal" is now very different and changed forever. I suppose, more than anything being back home makes it next to impossible to not think about things the way they were before May 26th.
Don't get me wrong. We are extremely happy to be home. Re-uniting Team White has been the boost that we all needed. Trevor is the same, happy go lucky boy who fills the home with laughter. We had a great weekend with Grandma and Grandpa White and got settled back into things.
A few highlights over the last few days was seeing Carmen open all of the fun gifts and cards that so many of you sent to her, including arts & crafts, hello kitty clothes, stuffed animals, books and an amazing American Girl doll named Kanani.
Carmen helped her Mom make bread and fresh juice in our new bread maker and juicer. Heather was already amazing at watching what our family eats, but now we have added a few more things to really help us ensure that our family is only eating the best for our bodies.
Carmen was excited to visit the Hanalei Farmers Market on Saturday where we stocked up on fresh fruit, vegetables and coconuts. Unfortunately, the trip was probably a little too much too soon and proved that we have to continue to take things slow. Then we came home and had a fun filled afternoon of face painting and setting up a tent in the back yard which provided tons of entertainment for Trevor.
Daddy and Trevor even camped outside on Saturday night and had a great time!
Heather and I are taking Carmen back to Honolulu tomorrow night for her 5:30am appointment on Tuesday. This week is very important for Carmen's future. Tuesday will mark the end of the induction phase. She will be placed under general anesthesia to have a spinal tap, marrow biopsy and minor surgery to remove her Piddycone and insert a semi-permanent port-a-cath under her skin. Unfortunately we need to wait until Friday for the results which will essentially dictate how the next 3 years of treatment will go for Carmen.
During the induction phase the doctors prescribe the same chemotherapy treatments for anyone who has ALL. During this 29 days of induction the Doctors are gathering data, learning about Carmen's genetics and preparing for the final test results of induction. Once all of this data is compiled, the Doctors will be able to ascertain which therapy protocol is right for Carmen.
It is amazing that they can fine tune Carmen's treatment to exactly what she needs. On the other hand, it is upsetting to realize that this first phase of treatment may have been giving her levels of drugs that her little body did not need. The bottom line is, the whole thing is amazing and terrifying all at the same time.
It will be fantastic when her Piddycone is removed and she adjusts to the port-a-cath. Even more, Heather and I can not wait until Wednesday when we can stop giving Carmen these Steroids that are reeking havoc on our sweet little baby - impacting her mood, activity level and appetite.
We are staying positive and have every reason to be optimistic that Carmen's results will be stellar.
When Carmen had her first spinal tap I asked you all to send positive thoughts towards Kapi'olani Hospital. Please, where ever you are, send your prayers, love, light and positive energy towards Carmen on Tuesday at 7:30am Hawaii Time.
We love you,
A few images of the weekend.
Look at those eyes.
Fit for a Princess
Grandma "kitty" getting into the spirit
The Blue Monster Tiger Face
Monster Cave (tent)