Mommy's Time Out Magazine July 2017 - Page 17

Hi all,

Between McKinley's treatments, golf tournament planning and insurance issues....June has been crazy.  Her port is still not working.  At our appointment in early June where she yet again had to receive chemo via her arm vs her port it was decided that they would remove the port at her next lumbar puncture procedure (where she receives intrathecal chemo in her spine).  She would already be under anesthesia and at this point the port is serving no purpose so they wanted to take it out.  We also found out that we were in fact STILL ENDING TREATMENT on August 3 2017.  I have asked 542 questions between all the Drs because I want to ensure I'm comfortable with the decision as it was contradictory opinions between them.  I guess I'm as comfortable as I'm going to be.  She is still s.l.o.w.l.y being increased on her oral chemo since her last hold in May.  June 27th arrived and boy was it a busy day.  She started with her inhaled pentamadine down in pulmonary, we went upstairs to Hemonc and she received her chemo (via her arm) and she needed sugar.  I'm getting very aware of how she acts now if her sugars are low so I requested a check pretty quick and they got fluids going. Then we headed over to surgery where she was receiving a Lumbar Puncture with Intrathecal chemo and a port removal.  I'm pretty good (I actually prefer to be alone) at most her procedures/surgeries cause at this point I just have a system & routine.  But this port removal had me anxious.  Anything to do with her port gets me anxious as the placement of the port is what caused her blood clot early on in treatment and 5 VERY long months of shots in her leg twice a day of a blood thinner. Thankfully Casey could swing by right before I walked her back (and he happened to know the nurse anesthetist from another hospital) and he stayed until the surgeon told us all went well with the removal.  Kinda a bummer week for it to happen as she can't swim for a week after the surgery and well...its 4th of July and SUPER hot here.  But she totally gets it and keeps reminding people "the drs won't let me swim cause my button is gone". (Her "button" is what she calls her port).  This was her LAST Lumbar Puncture with chemo into her spine.  She will stay on oral chemo and receive one more chemo via her vein but then she is DONE with chemo. Its such a very exciting yet very anxious scary feeling.  I'm ready for her to be "normal" and not have to deal with all that she has gone through...but the thought of NO CHEMO really really scares me.  I know its working cause the leukemia is gone.  I have to trust that it is gone forever and it never ever returns.  That is literally my prayer every night.  So much so that Brady actually said my prayers verbatim last night.  Thank you for your continued support, prayer and love for our sweet girl.  She is doing great and we go July 5 for a follow up and to see if we can increase one of her oral chemos.

Karen