Cycle One DONE!

   Our little Hazelnut was able to be discharged on Valentine's Day and has officially and successfully completed Cycle #1 of Immunotherapy!!  It feels utterly extraordinary to be able to say that she is one-six finished with her very last phase of treatment, but after last week, I know it will be a difficult journey.  Overall, it was a very challenging experience (but I kept telling myself it was not nearly as difficult as the ICU!), with Hazel never feeling comfortable, losing her appetite, being overcome with exhaustion (from the discomfort and the around the clock Benadryl), and fighting pain, fevers and allergic reactions.     The first day she started the Ch 14.18, she was experiencing quite a bit of pain.  It came upon her almost immediately and she was squirming, crying out and kept saying "I want to go home!". The nurses and doctors had to raise the pain medication drip several different times until we found the right dose, but she never really recovered or got comfortable and no amount of pain meds would have been able to help her.  In addition, her whole body turned red and hot.  However, she never broke our in hives or had any swelling, so the team was unsure if it was an allergic reaction or not.  Thankfully, she made it through the day (and each subsequent day) without ever having to slow or stop the infusion and was able to receive the whole dose, which is the most important factor of this treatment.  In the evening, the pump was turned off, and she was weaned off the pain medication slowly.  She immediately felt better once the infusion was done, but never got to 100%.  In fact, much different than I had hoped, we had many a sleepless nights during this hospital stay.  The second, third and fourth days, her pain was managed so much better!  She still felt very unwell and uncomfortable, but was no longer crying out.  She hardly ever got out of bed, if at all, and would not eat anything.  Then each night, just as the infusion was finishing, Hazel began breaking out in hives and would have swelling in her face and lips.  One night she began coughing so much that she required a breathing treatment.  It was certainly a frightening time, but I had so much confidence in the fact that the Lord has brought us through much worse!  And the medical team that administers this treatment is extremely experienced and knew exactly what to do in each situation we faced.  Now that we have one cycle under our belts, we now know what to expect and what treatments work best to manage Hazel's side effects, so hopefully it will not be nearly as challenging during cycles #3 & #5.  Cycles #2 (which begins March 3rd) & #4 add a second infusion to the mix, so we will have to face some more trial and error.  Here are a few photos from the week:

     Since coming home, Hazel has felt so much better!  We walked through the door to our home and she just hit the ground running.  The doctors weren't kidding when they said once the infusion is done, it's done! The only thing she has been struggling with has been her appetite.  It took up until today for it to really start coming back.  She also began her course of Accutane, which requires her to take three pills in the morning and three pills in the evening.  I have been feeling very anxious about this step, trying to imagine how we were going to get a newly three year old to swallow six pills a day; but boy she takes these things like a champ!  She has just blown us away with her resilience and ability to adapt to new situations.  It has been so much harder for Aaron and I to constantly readjust to new normals every few weeks, but she and her siblings take these moments in their stride.  God has been so faithful to lift these children up and I will be forever grateful.