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.

Thursday, March 14, 2013

Take to the road ...

Road trip planning is in the works. This family is going to the ocean via New Orleans. Or at least that is the plan. Even if just for a glimpse, a chance to dip our toes in salt water, smell fresh sea air. To walk on the beach, where the mighty ocean meets the sand. It will be worth it.

Today we had a few appointments at the hospital, first for blood work and then a visit to the clinic. All looks good and there are no concerns right now. We are now scheduled for a bone marrow aspiration on Tuesday and while Phoebe is sedated, there is a plan in place to unblock her tear duct. Strangest thing is that Phoebe does not produce tears when she cries. None at all. I am told, to have dry eyes, is fairly common post transplant, but Phoebe often also has trouble with drainage from her eyes. Sometimes it is so bad that her eyes are sealed shut when she wakes in the morning. And the process of opening them is painful and difficult. To unblock a tear duct surgically is a simple and standard procedure with little to no side effects that has been suggested by her doctors. If tear ducts are still blocked by Phoebe's age, no amount of breast milk will unblock them. Have you heard this? Apparently (I was told this by many) this is how to fix a blocked duct ... that is to apply miraculous and multi purpose breast milk to the eye. Serious. I can tell you, however, that we have tried this and it didn't work. Not recently, but still.

The latest chimerism shows 100% donor cells and we are hopeful that as the bone marrow results come in, they will be equally as good. Better actually. They will be better. We are hopeful they will be MRD negative which means that after much searching, no leukemia will be found. The "plan" and our next steps rest on these results and what they show. If they are not negative, Phoebe will need more treatment and/or more of my cells, the details of this are fuzzy.

Please send Miss Phoebe some love and extra special vibes this weekend and leading up to this important test. We have had countless bone marrow aspirations but none have evoked fear and worry in me like this one is.

In the meantime, we will take to the road. This journey has taught us to take nothing for granted. This includes a chance to see the ocean. Which will be a first for Phoebe.

One of many firsts, I know.

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