Tuesday April 26, 2011 was a day Todd and I both sensed our lives would change forever. It started off fairly normal other than our little girl recovering from a double ear infection, or so we thought. As the afternoon came I felt a little uneasy about her lack of mobility. The previous Saturday we took her to the pediatrician for a new antibiotic the morning after Gracie and I made it home from a long and wearing trip to Utah (mixed in with some fun times with family). That was the day she stopped walking, we thought she was just lethargic and didn’t have the energy from being sick the past week. She continued to stay wherever I put her and cried each time I encouraged her to walk or crawl. So I made the call I didn’t know would change our lives. They had an opening to see her in half hour so I woke her from her peaceful sleep. On the way to the clinic I had thoughts in my mind that made me think I was a little crazy. Tears came to eyes as I wondered what would I do if something was really wrong with my perfect little girl? What if I lost her, how would we handle things? I figured it was just me letting my mind wander where it shouldn’t , but felt the strong response we would make it through. No matter what we could handle whatever would come with the strength of the Lord. I forgot about these thoughts until a few days later.
I relayed my concerns to the Nurse Practicioner who seemed totally unsure about why she wouldn’t be walking as she seemed to have no pain in her legs when she moved them in every direction. The only thing of slight concern were the few petechia (red spots) on her legs and neck. Tiny red dots that I had noticed on her neck the night before, but not on her legs. She had a Dr come in for a second opinion. He also seemed confused and very unsure where to go with this case, although his next decision would prove to be inspired of the Lord as he said he would feel more comfortable having her blood drawn and doing a urine test just to make sure there wasn’t some sort of bleeding issue that got too far before we had it checked. I agreed and they began to tape the bag on to catch her urine and got me the order for the lab. I called Todd and he met us at the hospital and held her as she screamed during her first of many pokes that day. It took all the nurses they had to hold her even with Todd holding her tight against his chest. After it was over he wanted to come home with us even though he had a test that week and needed to spend time studying. I told him we would be fine and we would see him in a few hours. I doubt he did much studying after that he sensed something was coming.
I took her home and she fell asleep, exhausted as she had been for several days. Not long after my phone rang and it was the Dr. The words he said wouldn’t be absorbed for days. They had several concerns with the results of her blood tests including low platelets (27,000), she was anemic (with low hemoglobin) and she had high overall white blood cell counts, but extremely low neutrophils (a specific white blood cell that fights infection) she was neutropenic. He told me had called the Hematology/Oncology specialists at OHSU and they were waiting for us to show up at the pediatric ER. He said he hated to bring this word up to any parent, but the levels she had shown were leading them to believe she either had leukemia or an intense viral suppression. I tried to convince myself it was viral suppression but deep down couldn’t believe it. He told me to pack our bags we should plan on staying the night. They would be doing some tests tonight and would continue testing in the morning.
I called Todd and he came home immediately. His thoughts were more vivid than mine after his recent block on oncology. He knew the levels for leukemia and that hers pointed in that direction. We woke her again and headed to the hospital. We learned early on she was a fighter and somewhat resistant to sedation. They tried to use nitrous oxide to calm her while they poked her hands since her arms had already been poked too much. She was dehydrated so they struggled again to find a vein. Four nurses and Todd held her for half hour while I held the mask on her face that never relaxed her. She screamed beneath the mask as they went from one hand to the next finally getting the blood drawn and an iv line in place. We spent the next few hours just trying to comfort her as Dr’s and nurses came in and out waiting for results.
Her levels had dropped again. Her platelets were at 18,000. Hemoglobin-8.5. White blood cells not as high as they thought. The ER Dr came back in and told us the results, but that she wasn’t neutropenic as they had thought my heart jumped I felt encouraged that she didn’t have leukemia. Minutes later he returned apologizing for his error. She was in fact very neutropenic and only 3% of all her WBC’s were neutrophils. They put her on isolation and anyone entering the room had to wear a mask, gloves and a gown. He told us the only explanation he could come up with for her not walking was possible bone pain caused by leukemia. My jumping heart stopped instantly.
They put a mask on her about 11:30 PM and wheeled us through a maze of hallways to get to the hematology/oncology floor at Doernbecher. The beginning of the longest night of my life. After midnight they came in and told us they needed to do a chest x-ray because she had a bit of a cough and they needed to check her lungs for fluid. They finished the chest x-ray and took off the shield which knocked out the IV. I could barely breath, my heart hurt. They were going to start the process all over again. And she cried and cried as we tried as hard as we could to hold her hand with clean gauze and enough pressure to stop the bleeding, it seemed like forever. Todd requested sedation for her and the nurse told us they couldn’t do it because there was no one to intubate her at night. He finally convinced her to ask the Dr for another option. They gave her a little Ativan and she fell asleep…until they tried again for another vein. We walked her to the procedure room and I knew I couldn’t watch her again, I let Todd hold her in the room and walked the halls of the hospital. I walked until I could no longer hear her crying, then turned around. Soon I heard her cries again and turned around. Time dragged as I kept thinking they would be out any minute. I finally returned to her room unable to hear her cries any longer. After half hour of trying they returned. No luck. They had blown 3 veins and tried 8 different sites. Todd insisted they hydrate her or give her something more for sedation before they try again. They said they didn’t know what else they could do and finally an IV nurse suggested a nasal sedative call Versed. It proved much more effective. She only cried when poked her and then went back to sleep. I again stayed out of the procedure room and they returned with an IV in her tiny foot. She slept peacefully in her Daddy’s arms and they informed us the vein was too small to draw any blood or give her any medicine through. They could only hydrate her with a drip. We requested they do her night time blood draw while she was still sedated and leave her alone to finally sleep for a few hours. By then it was 4 am. She was scheduled for sedation and a bone marrow aspiration as well as a spinal tap at 9 the next morning. Her first 6 hour fast began. I layed restlessly on the window seat for a few hours while Todd held her as she slept. We switched spots and I held her for a time until they came in at 8 am for vitals.
About 9:15 am they came in and we walked her back to the procedure room and watched as they sedated her, then left feeling completely helpless. We had decided to have them place PICC line to avoid more IV’s and the poking that goes with it. They expected about an hour to complete all 3 procedures. It took over 2. They said each procedure had been more difficult than expected. They tried two sites in her right arm for the PICC line that wouldn’t work and finally placed it in the left arm. The spinal tap took more time as the spinal fluid was dripping one drop at a time, and the bone marrow aspiration was much more difficult because the marrow has very hard and they expected packed with blasts (immature white blood cells).
The next day and a half was a lot of waiting and wondering. They told us they had seen blasts in her peripheral blood and they should only be seen in the bone marrow. They supposed to mature in the bone marrow before being released into the blood stream. I asked if they were still considering viral suppression or if they had pretty well ruled it out as her levels had dropped again at her last blood test. Her platelets were 14,000 and they had had to transfuse before they could perform the bone marrow aspiration. Hemoglobin 7.4. The answer was no, their only suspicion was ALL (acute lymphoblastic leukemia) but there could be some other factors to look at. We asked question after question after question the next few days. Every time someone came in I had another question until Thursday at about 5pm. The results were back from the bone marrow and it was in fact as we had suspected. Our little Gracie had leukemia. I tried to listen as the resident began explaining and talking the next hour. All I could do was look at Gracie as she lay sleeping in my arms. I didn’t want to ask any more questions, I could barely force my mind to listen to the words she was saying. I just wanted to sit and hold her in silence which seemed to be a big request. I called and told my Mom the news as they were all waiting to hear and as she asked questions I kept the conversation brief I was for the first time completely emotionally drained.
That night they gave her red blood cell transfusion and she got a little bit of life back. She began swelling from all the fluids and gained noticeable water weight. Friday morning they started chemo. Another spinal tap and intrathecal chemo, then some IV chemo. The oral meds seemed never ending. Steroids(2x.day) started along with prilosec to protect her stomach and two drugs (3x/day each) and pain meds as needed. At times they would bring in 5 doses of medication for us to give her. Friday brought lots of information and questions about whether or not we would want to have her on study. Todd went back to school to figure out his last two tests of the year. Thankfully his Mother had come out Wednesday evening and was there to help me with the two person job beyond nurses at the hospital. With all the stress and confusion going on came a pretty constant peace and comfort throughout our stay there as well as an overwhelming response of prayers, fasting, love and support through many different family and friends. We learned and learned about what we would need to know to take of her. What symptoms to watch for and some of what to expect, still very oblivious to how real the effects of the drugs would become.
Time has passed, in fact 20 days since we first entered that hospital and we have come to know how real the effects are and how much life would change for the 3 of us. We have many things we look forward to in the future including the day I see her healed from this horrible disease the has taken over her body. Days when we can go to crowded places and not fear for her life. Days when she can walk again and she will finally remember what it feels like to healthy, when the cancer is gone and we no longer have to give constant meds or go to the clinic weekly. Until that day we will take things one day at a time and enjoy each precious moment we have when she smiles at us or falls peacefully asleep in my arms. The little moments each day that make life it should be. My perspective on life will be forever changed. Those things that used to matter often don’t matter anymore and there are few things that REALLY matter. I hope I never have another day where I let my mind worry over the things that don’t. I have been blessed with far too many things that do. The pain I have felt watching Gracie suffer at times can only be compared by the contrast of the joy I feel when she’s happy.
This journey will be long, but the growth will be great. Our little girl will show us more about courage and strength than we ever dreamed of possessing. The angels on earth who have helped us survive these past few weeks are truly that. We have seen the Lord working through so many of his children to bless our lives and look forward to the day that we have the same opportunity. It is amazing the hearts of gold that so many surrounding possess. I hope to learn from each of them how to be so pure and giving.
