9.26.2016

Sunflower Field & A Life Catch Up




I am finally sharing the pictures from the sunflower field adventure. It was so amazing to see in person. It was truly breathtaking to see such a large amount of flowers blooming all in one location. This was my first time visiting a sunflower field, and it won't be the last. My inner flower child was beaming with joy. :)








































Top: Pacsun || Jeans: Free People

Now onto what is really occupying my life, mind, heart, thoughts, feelings...really everything lately. A lot of you already know that my daughter's leukemia has come back and she restarted intense chemo treatments. Today is day 43 that we have been in the hospital. A whopping 6 weeks and 1 day since I have slept in my own bed, eaten at a dinner table with my family, not been woken up multiple times in the middle of the night for ICU trips or when my daughter cries out from pain or when nurses/doctors come in or for endless blood draws. It feels like it has been forever since I have seen my daughter walk, run, dance, eat, and play. Everyday that goes by that she has to stay in that dumb hospital bed breaks my heart. We are all sleep deprived, stressed, exhausted, and scared. Cancer is no joke, and neither is the treatment process. Because of the intense chemo treatments her blood cells..specifically her white blood cells have been wiped out. That is the whole goal to treating her leukemia, but it leaves her at a major risk of infection. At first it was a blood infection (which is gone now, yay!), but now she has proctitis (swelling of the rectum/anus) and an open wound on her rectum and some type of infection in her colon/intestines as well...I know, its disgusting and very very painful. It is major, and if it does not heal soon it could cause her long term damage.

As I am typing this up my daughter is currently in the OR (operating room) to get a new central line access (a catheter put in a large vein that can be used to draw blood and administer her long list of meds) because her's fell out yesterday...another long story that I won't get into. Everyday it feels like we are battling a new challenge and just trying to put out fires. I thought we were going to the OR for a different reason, which was hopefully to get rid of the infected tissue in her colon/intestines and redirect her colon so she would end up with a colostomy bag, but with her white blood cells still low she is even at more risk if they do the surgery now. So we are stuck with the waiting game. Waiting/praying/hoping her bottom heals on its own and/or waiting/hoping/praying that her counts can go up so we can get the operation if necessary (both of these go hand in hand because if her counts go up then her body is able to heal itself better). Meanwhile treating her leukemia is almost at a standstill while we wait to hear back about her bone marrow sample (should know something by tomorrow..at least that is what they keep saying), and also with this infection we can't keep knocking down her cell count because they are needed to help heal her infection, so the doctors are unsure of what her next treatment plan would be. We are trying to work through the delicate balance that the doctors are trying to play, and it is scary and beyond frustrating because each doctor has their own opinion on what is best. 

So this is where we are now...waiting, praying, and hoping that this amazing kiddo of mine can kick all of this. We anticipate many more stays in the hospital and do not have any idea of when we can return to our home. Thank you to everyone for their kind words, prayers, encouragements, gifts, cards, food, hugs, love, and support. It really means the world to us. It's because of you that we are able (to attempt) to keep up a semi-normal life. I am also beyond thankful for Johns Hopkins. Everyone here is amazing, and our nursing team has almost become a second family.

If you stayed to the end of all of this, thank you. There will be many more updates I'm sure, and until then we still ask for your prayers. Love you guys! XOXO