jinger robinson
11-18-2006, 10:55 PM
It was on June 6, 2005 that our world changed forever. Our baby was conceived and a new found joy had come over us. Pregnancy was just wonderful...it was a perfect pregnancy with no morning sickness and no problems. The day had finally come to find out what this bundle of joy was....a GIRL! It was soon after that we decided that Macie would be her name. You almost have to smile to say it...it was perfect, my little Macie Laine Robinson. All the while, she was growing and awaiting her day to become a part of our family. It was March 3, 2006 that she finally joined our family. She was a healthy baby girl, 6lbs 5oz and 17 3/4" long. She was beautiful in every way and just as beautiful as I had dreamed. We took her home on Sunday, March 5, 2006 and began our new lives with this precious angel. She was the one thing that finally made us whole. We went in for our routine check-up at four weeks to find that she was perfect in every way. She was healthy and growing and just beautiful. It was a short two weeks later on April 16, 2006 Easter Sunday, that we began to notice Macie wasn't herself. She had been sleeping more than usual and was breathing very quickly. She had some unusual bruising on her stomach that was the size of pin needles...almost so small you couldn't even see it. It was then that I became nervous to put her to sleep and called our pediatrician. She told us to take her to the emergency room and she would call ahead and let them know we were on our way. When we arrived, they took us back immediately and hooked Macie up to a pulse-ox machine. The number read 47...I had no idea what that number represented. It was then that I became aware that she was breathing less than 50% and needed to be intubated right away. They drew blood to run tests, but all the while were telling me how very sick she was. I couldn't believe this, considering there were no results on her blood and nothing to base this on. And even more, she was perfectly healthy until today. One doctor told me as she felt her abdomen that she was truly very sick...her liver was seven times its normal size and her spleen four times its size. She was hemoraging from the inside as well as her brain. It was shortly after that when the doctors came to tell us the news no parent wants to hear...Macie has Luekemia. I stood there in shock and disbelief...there was no way. We brought her in because she was breathing fast. They must have made a mistake and the poor parents that would have to hear this news would be devestated. But it was real, our baby had cancer. It was then that they told us her white blood count was unusaully high..811,760. Normal children and babies white count is around 5,000. In order to start chemotherapy, they would need to do an exchange of cells and bring that white count down dramatically. Otherwise, the chemotherapy breaking down that many luekemia cells would sure enough kill her. It was hours later when we found out they were able to get the white count down to 193,000...it was a miracle. She was ready to start chemotherapy. At this point, Macie was in the PICU, sedated and on a paralytic drug to keep her from moving. They weren't giving us much hope to make it through the night, but she was still here. They informed us that the chemo would probably shut down some of her organs and the problems to come were probably going to be more than her little body could handle. But everyday they told us that, she was still here and her organs were still in tact. It was eight days later when they lifted the sedation and paralytic drug, and removed the breathing tube. For the first time, we looked into her eyes and saw what a miracle God had given us. We were finally able to move to the 9th floor of Texas Childrens Hospital...the hematology/oncology floor. This is the floor where all the cancer patients receive their treatments. We knew we would be here for a while, but had no idea this would be our new home. Macie had finally finished her first round of treatment and to everyones surprise, she had done beautifully. Her body was able to handle the treatment with no major problems. It was then that we got the news we had been waiting for since April 16, 2006...REMISSION. We had done it...Macie was beating cancer. We kept on with more treatment and watched her as she grew up on the 9th floor with all the nurses and doctors to see. She learned how to eat again, tracking with her eyes, laughing out loud, and wanting to roll over. She was doing it, growing up in the hospital against all odds. It was September 3, 2006 when we finally had our first opportunity to go home....4 1/2 months later. It was wonderful. She had the world at her fingertips and was taking it all in. For the first time, we were home together as a family. It was a short five days later and we were back in with an infection. We fought off that infection and were able to go home again, all the while still undergoing chemotherapy. We were only home again for a short six days and were back in the hospital. But once again, early October gave us the opportunity to go home. Finally, at home as a family and making memories. Those were precious days. Macie was scheduled for another bone marrow aspiration to see if she was still in remission on October 23, 2006. We just knew she would be...she looked great and was feeling wonderful. Her counts were good and everything said she should be. But that evening of the 23rd, we got the news once again no parent wants to hear...RELAPSE. At that point we thought we still had some good options, so Friday October 27, 2006 we went to formally meet with our doctors to see where we go from here. It was then that our hearts truly broke. We could do more chemotherapy and get her back into remission, but keeping her there was a long shot. She had already failed intense chemotherapy, so the chances of keeping her in remission were not good. And bone marrow transplant looked even worse. Children under the age of three have a difficult time, but under the age of one is nearly unheard of. And with Macie being 7 1/2 months old, but the size of a newborn, it was almost impossible. So the plan was to do more chemotherapy and get her back into remission. It was a good plan and what made it even sweeter was we could still be at home as a family. Macie was still feeling good and we were home making memories. She was able to be outdoors and was in awe of her surroundings. It was a playground bigger than she could take in. She touched the faces of our dogs and laughed. She played in her crib for the first time and loved it. It was going to be okay...she was going to be the miracle and the one to show them all. It was a short week later on November 2, 2006 that we had a terrible night. Macie wouldn't quit crying and pulling her ear. For the first time, we had a problem that wasn't cancer related...an ear ache. I held her all night until we could go to the oncology clinic the next morning. It was then that Toby and I realized that this wasn't just an ear ache. They couldn't get a blood pressure and she was becoming non-responsive. I had no idea this would be our last moments with Macie. So they rushed us down to the emergency room and started fluids. But all the while, still no blood pressure. Once again she began to have difficulty breathing, so they intubated her. They continued to give her medicine to stabablize her blood pressure, but were not having any luck. They decided to move her to the PICU. They needed an additional line other than her PICC to give her antibiotics and blood, so it became imperative to put another one in. We were not with Macie at this time, but anxiously waiting to get back to her. I heard a nurse say they were calling for the family of Macie Robinson immediately...it was then that I knew she was dying. They had trouble getting a line placed and by then her heart had stopped beating. They were all working endlessly to revive her, but God was ready for her...and she was ready to go. I stood there in disbelief...it was all just a bad dream that I couldn't wake up from. But it wasn't..it was too real. I never knew when we walked in the clinic, we wouldn't be taking her home with us. We had come full circle...April 16, 2006 we were in the PICU trying to save her life...November 3, 2006 this time to say goodbye. It was those hours after losing Macie that were so very precious to us. We were able to bathe her one last time, dress her one last time, and rock her just one last time. For the first time she looked so peaceful, free of pain and not suffering. I always knew she was an agel, but on November 3, 2006 she earned her wings.