We now have one week at home under our belt. We also did our first “clinic” visit to DeVos yesterday. Madelyn had her port accessed for the first time. Basically like getting an IV in your arm but they put the little needle in the port that is under her skin on her chest. There is a picture of the port in her “Hospital Book” under the information tab on her site if you want a visual. She was very nervous. She is a kiddo that really likes to know what is going on so we talked through it at least 10 times the 24 hours before. They gave us magic cream (Lidocaine) to put on during our drive to Grand Rapids. It did the trick and numbed her skin. She was still scared but I don’t think it hurt too much. The hardest part was taking off the Tegaderm sticker that was holding the lidocaine on her skin. The first thing they did once we got her port accessed was draw labs and run her numbers. Brad and I have been anxiously waiting for these. In the hospital you get these numbers every morning and it’s a big part of your daily routine. So going without them for a week was challenging and a bit scary just not knowing. Well, Madelyn’s numbers came back better than we had hoped!
WBC: 1,180
Hemoglobin: 10.8
Platelets: 107,000
ANC: 390
Percent blast cells in the blood: 0%!!
All of these numbers are an improvement and show that the chemo is doing what it is suppose to be doing. The 0% blast (Leukemia) cells was a breath of fresh of air! However this doesn’t necessarily mean she is in remission quite yet but she is headed in the right direction!! In two weeks they will do a bone marrow biopsy to see if there are any blast cells in her bone marrow. The hope is there is not and that will mean she is in remission! Most children with ALL will achieve remission after the induction phase (two more weeks for us). However studies confirm that if treatment were stopped after the Induction phase, the leukemia cells would return. As a result, therapy will continue for 2 years after diagnosis. The next phase for us is the middle phase called Consolidation /Intensification. The goal of this phase is to kill any remaining leukemia cells and prevent a relapse. The finally phase of treatment is called Maintenance. The goal of this phase is to continue remission. All of the phases will consist of some combination of oral meds at home and trips to the clinic to get chemo.
Madelyn is doing well. She has been getting dressed in the morning. She is still playing lots of games and loves her art projects. The steroids are no joke and the girl is HUNGRY! She currently craves cheese puffs and eggs of all kind; fried egg whites, open egg sandwiches, egg burritos and egg pizzas. Brad has mastered the art of cooking eggs. =)
Madelyn’s Journey with ALL 