Another Fever + Goodbye Consolidation Phase!

As I mentioned in my last post - we had a repeat of Round 1 of the Consolidation Phase and a repeat of the same nasty Chemotherapy that destroys her counts.  We were expecting for the fever to hit us (if she were going to get one) around Thanksgiving, but thankfully we dodged that bullet and had a wonderful Thanksgiving with our family!  The fever did come though!  She got a cold a few days after Thanksgiving and a week later, she spiked a temperature on Sunday evening (12/3).  Numbing cream on the port and off to the Hospital we went - rinse and repeat!  We expected her counts to be low given the cold she had and sure enough her ANC was at 0 so to the pediatric unit we went to stay for the next several days!  They administered the standard antibiotic that pretty much covers any kind of infection, took blood cultures to see if anything is in her bloodstream, and a swab up the nose to rule out any kind of respiratory infection.  The blood cultures take 24 hours while they wait to see if anything grows on them - confirming or denying an infection.  The following night one of the cultures was positive and the other was negative.  The doctors seemed to think that it was most likely a contaminate that caused the positive (something as simple as her coughing or sneezing while they drew her blood).  Addie didn't have any other symptoms other than her fever and her Respiratory panel came back negative. She only had one dose of Tylenol in the ER and was able to fight the fever on her own the remaining time we were in the hospital.  To be able to leave the hospital her doctor wanted to have her be fever free for 24 hours AND her ANC on the rise.  The fevers were gone but her ANC was holding low and steady, which caused us to remain in the hospital for the next 5 days.  It was so frustrating because Addie felt great, looked great, was eating and drinking just fine. The even stopped her fluids after 3 days because she was eating and drinking and wasn't at risk for dehydrating.  They disconnected her from the obnoxious pole we had to move around with and she could move up and about her fancy (not) hospital room.  I compare waiting for her ANC to come up to "watching paint dry".  They only ever check her counts every morning, so when we would get her numbers in the morning, even if she had a wonderful day - we had to wait until the next morning to see what they would do.  We even had one of her little friends come visit her, which absolutely made her day!  Santa came to visit Addie too and brought her a bunch of goodies AND we had some visits from a few furry friends!! Child Life kept her busy with Christmas crafts and Strawberry, her Elf even showed up to watch over her at the Hospital!  Finally on Friday her ANC came up to 100 (still not great, but better than where it was all week) and her doctor felt confident enough to let us go home.  He wanted to send her home with an antibiotic just in case what the blood culture picked up was anything - better to play it safe than sorry.  A home health nurse came on Saturday to teach me how to administer the antibiotic through her port and I gave it to her each day for the next 6 days.  Her school has been sending home the crafts they do each day so Addie doesn't miss out - which is so sweet!

 

I say GOOD RIDDANCE to the Consolidation Phase as it wreaked havoc on my girl's immune system and her numbers / counts overall. I am so proud of how well she handled it all - and always with a smile on her face.  We were set to start our next phase (Interim-Maintenance) this past Wednesday (12/13), but in order to start that phase her ANC has to be above 750 and her platelets above 75.  They did a CBC on Tuesday which revealed her ANC back down to 60 (basically 0) and platelets at 59....SO FRUSTRATING!  They will be checking her numbers again on Tuesday and if she makes her counts we will begin the next phase on Wednesday.  On Day 1 of Interim Maintenance (I/M), Addie is going to have a spinal tap and bone marrow biopsy done before they can begin her chemo.  These are to ensure that the Consolidation phase with the intense chemo due to her being High Risk - worked.  I/M requires us to be admitted for about 4 days during which she will be given a high dose Methotrexate which will infuse over 24 hours as well as a subsequent drug and lots of fluids to help flush it out.  Methotrexate can be very damaging to the liver and kidneys, hence the need for flushing.  After 24 hours they will begin checking her levels and once they get to a safe level we can be discharged.  There will be 2 weeks in between each hospital admittance (assuming we will not be delayed due to low counts prior to each admission) and we will be admitted 4 times.  I/M is typically a 2 month phase give or take any delays we may encounter.

So that is where we stand today.  Addie is continuing to fight this beast with a great attitude and she is handling it all so so well.  I still can't believe she has this disease given how she looks/acts/feels everyday.  If you follow me on Instagram you have hopefully gotten to see my girl dancing non-stop - its all she wants to do!  We are enjoying the Holidays, and though we didn't get to go to some of our favorite places during Christmas (so not worth the risk of her getting sick), we are doing our best to enjoy the Holidays at home this year with decorating, Christmas cookies, Elf on the Shelf, hot cocoa and lots of Christmas movies - with a few trips around town to look at Christmas lights, of course! It makes me so happy to see that she has just as much excitement and love for the Christmas season as her Mama. 

I ask for continued prayers that she will continue to feel good through all of her treatment, and that she makes her counts so that we can start I/M next week.  Thank you all for reading and following along on our journey, and I hope the Holiday season has been good to you all!  How is Christmas in 10 days already! I don't want it to end!! 

With Love,