On October 26th, 2010, at 9 weeks old, Phoebe Rose was diagnosed with high risk MLL + Infantile Leukemia. On November 18th 2015 , she took her last breath. This is her story of hope and love in the face of cancer and despair. Phoebe always brought the joy and continues to inspire us to make a difference. It is best read from the beginning. Thank-you for visiting.

Wednesday, August 27, 2014

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. 

Only in the world of cancer treatment can things be described as well and they are described this way. Phoebe looks well, she is still running around after her sister and telling the nurses exactly what she thinks. She is feisty and full of spunk but there is more to Phoebe than meets the eye. Today her platelets and hemoglobin are dropping, she is close to needing a blood transfusion, she is neutropenic, meaning she has nothing to fight off infections, her EKG was slightly elevated, markers that signify tissue and cell damage are high - this could mean leukemia or it could mean that the drug is doing what we hope and breaking down the leukemia cells. We are hopeful it means the latter, we believe that it does as all of Phoebe's other levels are normal, but it is so hard not to worry. The worry is only compounded because we are exhausted. We are also homesick. Overwhelmed. Anxious. Scared. It is just hard. We need some good news and a real sign that this drug is working but there is no plan in place to test this until the beginning of September with the very end of this cycle. Patience is not a strength I have but something I have been working on for the past almost 4 years. 

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. 

1 comment:

  1. 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.