Independent Idalya
Idalya has a very strong presence that has always commanded attention. Her independence is displayed by her first clear words spoken. Instead of "Mommy" or "Daddy", they were "I do it!" which is still her favorite thing to say! After everyone remarking what a beautiful baby she was, we started her in a short-lived modeling stint. Within a few months she was shooting for H&M clothing and featured all over the world. We saw her in catalog websites in Turkey, Sweden, and other European countries modeling cute little outfits. It was amazing to see and experience that as a mother. She was such a 'ham' with the photographers and the staff.
We started noticing signs about a month and a half ago while we were on our way from Gammie's house in Florida and moving to our new home in Virginia. My husband was blessed with a great job that now allowed him to come home every night instead of traveling 4 days out of the week. One of the first things noticeable was the patchier rash on her legs and the bruises on her feet and she also just looked pale. A few days later we took her to a local pediatrician and after having a CBC test and physical exam we were informed that we had to go straight to the hospital, as the results were very concerning and she needed more blood work done to determine the underlying cause of her symptoms. After four days, one platelet and two blood transfusions, multiple tests, a bone marrow biopsy and aspirate, we had our answer: it was Leukemia, specifically "Pre-B A.L.L.". The bone marrow was at least 70% leukemic cells - the Oncologist said she had trouble even pulling marrow from the bone due to it being so packed with leukemic cells. The next day she was down in surgery and they were administering chemo via her spinal cord and inserting an access port in her chest. We truly felt like we were caught in a whirlwind and it all seems like a bad dream at this point. My parents immediately drove up and helped out with our 3 1/2 yr old son, Dominic. In the hospital we received amazing care from all the staff and were blessed to be at INOVA, what we feel is a great hospital with an amazing Cancer/Hemotology Unit.
For the first 30 days of treatment she was on a steroid which caused severe mood swings, food cravings all day and night, and made her swell and retain water. We joked that she was eating like a pregnant woman and had the personality of one too!! Her face and stomach was so swollen and she just looked like someone else to my husband, it really impacted him to see his baby girl like this. The chemotherapy drugs along with the steroid causes constipation and distention - so you can just imagine what we were dealing with. At one point we measured and her stomach was 22" in diameter because she was eating so much and not going to the bathroom, we had to give her multiple medications to deal with the side-effects of other medication. At our last appointment the Dr. pointed out some spots in her belly to be stretch marks.
A bone marrow was collected for on day 29 to determine what the next phase of treatment would look like. Thankfully, she is considered to be in remission now with 0.01% of bone marrow being leukemic. The appointments and chemo will continue along with multiple lumbar punctures for Intrathecal chemo.
Idalya's has lost her hair in little clumps and at a slower pace than expected and maybe this was God's way of helping me deal with this - it seems like it will be a difficult issue to deal with once we are at the bald phase. Meanwhile we cut a lock and stored it for her. We are not quite sure what the next few years is going to look like, but we imagine more challenges ahead as we are going to be in treatment for about 2.5 years. With the research now available and the regimen set forth by the Children's Oncology Group (COG) that is how long it usually takes for leukemia to be eradicated and hopefully be able to claim she is "cured". The doctors and nurses tell us to prepare for at least 5 hospital admissions during this time, for fevers, special treatments or other issues which usually come up during treatment.
Our hospital admission took a toll on our daughter...we went days and weeks without a smile. This was one of the most difficult things about the first 30 days. We felt like she was alive but without that spark, without that smile and character of hers.
I was talking to my husband and I said I feel like I am constantly waiting for the bottom to fall out, which may sound crazy, but so far in our journey we have had many blessings from friends, neighbors, strangers and Idalya herself. We are starting to see her sparkle come back in her eyes, and the curiosity and the confidence in her steps. We are waiting for it all to spin downward but are trying to remain positive in this. I want so badly to just have a 'normal' family life, with concerns of what to do on the weekend, or scheduling a play date instead of chemo. We know we will be there again one day, it is just hard to keep your eye on the prize when it is such a long journey!
We appreciate any prayers or donations for Idalya from the supporters of CBC.
Visit Idalya's facebook page at http://www.facebook.com/idalyasfund?sk=photos