Phoebe had a visit to the hospital on Wednesday for blood work, an EKG, a lumbar puncture with chemo, and a visit with the doctors.
We have had a string of bad luck here in Denver to add to the stress of our everyday. Last night our rental car was broken into. They didn't really take anything, just a spray bottle of kid's sunscreen and Jon's sunglasses. It could be worse. They did make a point of using the spray bottle to decorate the interior and exterior of the car with sunscreen though. That was nice of them. Last week this same rental car was towed and because it is a rental, it took two days and too much money to release it. I often say that our life is manageable because everything outside of Phoebe being sick is relatively okay. Lately though, the small stuff is becoming big stuff and we are struggling to cope.
Sometimes the stress is palpable. I can feel it. It makes my head ache, my chest hurt and my mind race. Despite all of this we continue to breath in and out and put one foot in front of the other. It is the only option, but I long for a day when I no longer cling desperately to hope. When things are not so precarious.
I am thankful that we are here and I do not take for granted that we have this chance - it is a good and promising chance, but sometimes the bright light that we seek at the end of this long tunnel seems too dim and far away. Today is just one of those days.
We are back at the hospital tomorrow to repeat the EKG - the EKG is done regularly because some of the adult patients experienced mild heart changes while on the study drug. We need it to be normal. We are in again on Friday for more blood work and to see if Phoebe needs blood products before the weekend. I hope not. I hope to see count recovery, a healthy heart and a sign that we are on the right path.
I will try to be brief for your sake. You guys have strength and courage that I have never seen in anyone else. The challenges that life is putting in front of you on a daily basis is beyond comprehension. You are all lucky to have each other. By that I mean, mom and dad, that Phoebe is such a fighter and from the sounds of it a very chipper one, and to Phoebe that the two of you are so resilient and positive. How you manage I will never know. I am in your corner and praying for you guys all the time. I do hope that you do get to a day where all this nightmare is over with and you get to live as a family, as normal as that will be for you. God bless you all.
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