This has been a crazy admission, to put it lightly. Since Monday, Lily has had multiple reactions to the treatment medications. She’s had another hypotensive episode (low blood pressures) and had 2 episodes of hives, one occurring during the hypotensive episode. Her treatment medications were held and eventually restarted at decreased doses after intervention by the medical staff. Lily had a couple fevers in the first couple days that never amounted to an active infection, just a side effect from the medications. One of the ongoing issues that Lily and the team have been fighting is the fluid balance in Lily’s body. One of the medications (IL-2) holds on to fluid and shifts it into the wrong places (lungs, capillaries, etc..) so Lily has been getting fluid boluses (due to low specific gravity of her urine for appropriate kidney function) which are then countered by Lasix to rid her body of the fluid before it can collect in all the wrong places. Lily also got a unit of packed red blood cells Tuesday evening and was feeling much better afterwards. Wednesday morning brought out more hives upon waking. Mid afternoon brought about a transfer to the PICU (pediatric ICU) due to Lily’s various borderline serious complications. The one thing that made the team transfer Lily to the PICU was the dictation of the Immunotherapy protocol that if a certain medication (hydrocortisone) needed to be given, it had to be given in an ICU setting. This was Lily’s first stay in the PICU as she never needed it even after her surgery to resect her tumor. Fortunately, Lily’s nurse from the hematology/oncology unit would follow her to the PICU (conveniently on the same floor) so Lily would have 2 nurses in the PICU. Wednesday brought a slightly cranky Lily and mom, but no further issues! Thursday, also no further issues!! Our stay thus far in the PICU truly was just precautionary. Though today my mood was better, Lily’s mood worsened. Everything Lily wanted to do or go, she couldn’t and was not a happy camper. She has been eating much better, drinking well, just not having a BM yet and is super annoyed by all of the tubes and cords connecting everything everywhere! Lily should be done with her treatment infusions mid morning and then the team wasn’t to monitor Lily for quite awhile because of her various reactions. We are hoping to spring out of here later afternoon/early evening and see Gavin for the first time in almost 2 weeks!!!!! With this week finally drawing to a close, Lily has 4 more weeks of inpatient stays ahead. This week has proven up to my coined “hell week” but she is a fighter! Many of the children that go through this Immunotherapy treatment study run into many complications and hardly ever get the full dosing of the treatment medications. The medical team has proven to try to balance getting the most medication to Lily while keeping her safety as the primary focus. Each day and even each road block was carefully talked through and compared with the “bible” protocol (300+ page document) to ensure the appropriate next steps were taken. Calls were made in the middle of the night, to heads of the research study, and all imput, especially mine and Lily’s, were just as important as every other member of the medical team. I’ve never seen such teamwork and collaboration as I have this week. Lily has gotten Grade A care since day one but this week was truly the most challenging thus far and the team really shined in the face of adversity and multiple and constant obstacles. This is one of the many behaviors and choices that each of us can choose in our lives. I talk with many of my friends, family and supports I encounter as of late to these points. Life happens for all of us; my bad may be different from your bad, but no matter how severe our “bad” may be, it’s still OUR bad. We choose how we handle our bad, good, and every day events. Sometimes we just can’t help but get upset, breakdown and want to feel sorry for ourselves and what life has handed us. There is nothing wrong with this as long as it is short-lived. We must then move on and, again, choose how we will interpret that event. Will we learn from the bad or use it as an excuse? Do we really enjoy the good in our lives or take advantage of them? Are we eternally looking for more or enjoying what we have today? I don’t have all of the answers or a perfect life, but I do choose to try my best, be me, and live to be happy. I refuse to let others affect what I am responsible for. Being faced with some of the most difficult times of my and possibly my children’s lives, I have chosen to keep looking for the good, strive for happiness, and to never give up on anything or anyone. With the right mindset, we can do anything! Thank you all for your continued support, I will update once we are home or if additional issues arise. Hugs and Love ~ Melissa :-)
Posted on: Fri, 04 Jul 2014 05:06:39 +0000
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