Mickey's Cancer Story
Since we chose to rebuild our site due to space constraints, we’re going to give you the “Reader’s Digest” version of the past year of our life. In the late fall of 2004, Mickey, our then 7-year-old daughter who has Down syndrome (Ds), began to complain of persistent tummy aches. Our doctor sent us for an X-ray that showed compacted stool. This is not uncommon in children with Ds so we began to give her mineral oil to remedy the problem. She also was getting tired easily and refusing to do things we asked of her. This we chalked up to the fact that Mickey can be lazy sometimes on top of being very stubborn. We began to notice her color was a little “off” but her skin tones seemed to change depending on how she was feeling all her life.
On Friday December 3, I took her to the doctor for an ear infection. Although she typically responded very quickly to antibiotics, this time she didn’t. On Monday the 6th, I took her back to the doctor and we were sent for blood work. We were hoping to rule out mono (if only it had just been mono!), but really just wanted to find out what was going on. At 5:00 that evening our doctor called and told us to pack a bag and get to Riley Children’s Hospital because Mickey’s hemoglobin was 4.1. I asked what normal was and she said 10-12 was normal. Oh my! I was getting scared. She had called ahead and spoken to a hematologist there who would be ready for us. She wisely did not add the rest of his title which is "oncologist". She knew me well enough not to mention that. While waiting for Michael to get home from work, I frantically made phone calls telling family and friends what was going on and asking them to pray. I had time to hop online and look up low hemoglobin. What I found scared me but sadly did not surprise me. I learned that it was a symptom of leukemia as were all the other things we’d been seeing – the stomach pain (due to enlarged spleen), the fatigue and lethargy, the pale skin. So I told Michael on the way to Riley that we needed to be prepared as we could be looking at leukemia. Looking back I know that was God preparing me for the diagnosis so I would not be a total mess in the ER when the mentioned that awful word.
We got to the ER and after a lot of struggle the tech was able to get an IV in Mickey’s hand. Some blood spilled to the floor and it looked like watered down cherry Kool Aid, not rich dark red like healthy blood is. Mickey was admitted to the 5th floor Hem/Onc unit that night around midnight. On Tuesday December 7, we got the official diagnosis. Mickey has acute lymphoblastic leukemia (ALL). Over the next 5 days, she began her chemotherapy, had a port-a-cath inserted on her chest wall which will be used for the duration of treatment instead of an IV line, received blood and platelets and began a healing process that will be ongoing till February 2007. Over the course of the year she has received several units of life saving blood and platelets. For most of the year we had weekly clinic visits where Mickey would receive chemo &/or blood products if needed. She has had many lumbar punctures (spinal taps) to deliver chemo into her central nervous system. She has responded very well to treatment. She has been inpatient 4 times since diagnosis mostly for fevers. She is back in school full time beginning with the 2nd grading period of this year. She is doing remarkably well physically, emotionally, socially, and academically. We are all so proud of our little cancer warrior. In all she has gone through, she has rarely complained and is a ray of sunshine to all she comes in contact with. She has reached long-term maintenance. This means oral chemo daily at home, monthly clinic visits for chemo and lumbar punctures every 3 months. What a wonderful phase as it gives us a taste of normalcy, or the “new normal” as life will never be “normal” again for us.
We are very thankful for our families. Our 6-year-old son Brad has been such a blessing to us this year. He takes wonderful care of his sister when she’s not feeling well and helps keep us going when we feel so overwhelmed with everything going on. Michael’s family and my family have been such blessings to us helping us out in every way. We have our church family and friends literally all over the world praying for Mickey and our family. For this we are forever grateful. God has brought us so far in this past year. We are on a journey we would have never chosen, but we know we do not walk it alone. Thank you for walking along with us, holding our hands, drying our tears, being our strength when we had no strength left. God has blessed us richly through you.