Loving our regular, old, normal Life

What a couple weeks it has been.

A week and a half ago, Ella's doctor surprised us with the news that she had a low red blood cell count. Then we were further surprised to learn that her 'severe anemia' wasn't caused by an iron deficiency. They didn't know what was causing it.

We went back to a Children's Hospital "Close to Home" facility a week later for what I thought would be a simple blood test. Ella was so active and playful. I was convinced that the blood test would show that her blood count was back up. But when I called the hematologist at Children's, she told me it wasn't up. It was down.

My stomach dropped. The world around me shook and spun a little. Nightmare scenarios raced through my mind. They told us we'd need to see a hematology specialist the next day.

Oddly, my first thought was that we needed to make Monday a Fun Day for Ella Bella. I didn't know what the rest of the week was going to bring. So as crazy as it sounds, we went to the zoo with Daddy and Kate Kate and Grandma. The 'rides' section of the zoo was open, and Ella happily ran from ride to ride in her black and white ruffle skirt and red-ribbon pigtails.





As I watched her, the fear in my stomach subsided as I thought again and again...she can't be that sick. She looks so healthy.



The next day, we saw a hematologist at Children's Hospital. They took more blood. Again, I was hopeful. But the hematologist told us we'd need to stay the day at the Hematology/Oncology clinic, because Ella would need a blood transfusion. A blood transfusion. I had no idea what to expect. I just knew those were scary words. Then he also told us that she'd need a bone marrow biopsy on Thursday. And after doing more tests that same day, he moved the biopsy up to Wednesday. Our world continued to spin.

There aren't many words I can find to explain how Ella was through the transfusion. She had to have her little arms pricked with needles more than a half dozen times, as we held her down, tears running down her face. She screamed "Day hoiting me, Mama! Day hoiting me!" again and again.

But once the port was in, and the blood bag was attached, she quickly focused on other things. She watched Dora and Tinkerbell videos. She slept in a white rod-iron crib. She walked over to a toy box and found crayons and stickers and play dough, and happily played as she maneuvered around the blood bag cord. This little two-year-old girl did this for four hours. Aside from saying it hurt when they pricked her, she never once complained. She never once asked why. She never said she was bored. She just accepted what was happening and tried to focus on happier things.

We were grateful to be able to go home after the transfusion. Grandma was waiting for us, with a new dolly and play doctor's bag, which Ella played with all night long. It was both heartbreaking and endearing to see her check the baby's heart, take her temperature in her armpit and give her shots in the arm....re-enacting everything she'd been through earlier that very same day. She kept repeating "I'm da doctor. I'm Ella da doctor. I make you feel bedda. Dis gonna hoit. But just a lidda bit."



There's just no way to describe that night. A persistent feeling of nausea and fear seemed to fill my entire body and it covered all of my thoughts. We were exhausted, but sleep was impossible. The next day, our little girl would have a bone marrow biopsy. A very big needle would be inserted into her very little hip, right through the bone. And after the surgery, we'd get news that could possibly affect the rest of our lives.

I said a hundred little prayers throughout the day and night. Whenever I found my mind going down the endless rabbit holes of "what if," I tried to stop myself and turn my thoughts to God. "God, please let Ella be well. Please protect her little body. Please make her healthy. Please let her stay with us. Please let her grow up into a happy and healthy woman who can serve You. Please let her have a happy and joyful childhood." These were my thoughts as I drifted in and out of sleep.

Wednesday morning, we put her in the car to take her to the surgery center and still, she didn't complain. She chatted all the way to the surgery center. She happily played in the waiting room with all the toys, even shared her dolls with another little girl who was waiting with us. When we finally went back to 'pre-op' to get her ready for surgery, she seemed excited to put on her 'new yellow jammies,' and only when her daddy told her she looked like a big banana did she ask for food. It was 11 a.m. and she hadn't been able to eat anything since the night before.

The worst moment was when they took her from us, still awake. She must've been so frightened of the male nurse, in scrubs and a mask, who she'd never seen before.

But less than an hour later, they were calling our names and they let us go get her. She was groggy and crying as she awoke in the small white iron 'crib.' But the moment I took her in my arms, she rested her head on my shoulder and went back to sleep. Even as we walked out to the car, she was patting my back in her sleep, her head on my shoulder. A two-year-old little girl, consoling her mommy, almost unconciously.

We brought her home and put her in her new big-girl bed, and I laid next to her and watched her sleep for four hours, falling into and out of sleep myself.



Every time I awoke from partial sleep, the reality of the situation again hit me, hard, like a wave crashing over you at the beach. I felt short of breath and sick to my stomach every time the phone rang. The hematologist had promised to call at 3 o'clock to tell us the preliminary results of the biopsy.

We finally received the call close to 4. Chris and I ran onto the back porch and shut the door. Our hearts were pounding. Racing. I could hear my heart and I could feel it vibrating throughout my body.

It took him about 45 seconds to tell us that neither he and 2 other hematologist/oncologists believed that there was no Leukemia present in her system. For the first time, I felt like I could at least breathe again. The world around me stopped shaking. My heartbeat immediately softened. He went on to explain that they still don't understand what's causing her extremely low blood counts.

It could be a rare reaction to a severe bacterial or viral infection. It could be a rare reaction to an antibiotic she'd taken months before. He believes, and is hoping, that her body for some reason stopped producing red blood cells in reaction to whatever 'assault' had caused her very long bout of stomach sickness the month before.

The rest of our Wednesday was otherwise a normal day. A gloriously 'normal' day. But just watching Ella and Kate play, or fight, or eat, or watch TV....it was all kind of magical and surreal. I didn't leave my nightgown all day. Didn't put on makeup; although I do think I brushed my teeth. I just walked around in a weird state of dizzy gratitude.

So it was all the more touching when, later that night, as I lay with Ella in her big girl bed, she took my face in between her hands, looked into my eyes...and said, "I lub you, Mama. You bootifull, Mommy." She put her arm around my neck, as if I were her beloved poodle, and she fell asleep.

The hematologist called again yesterday and then again today (Friday) and told us they've done more tests, and those tests continue to indicate that there are no signs of cancer, no signs of aplastic anemia, no serious issues related to her chromosomes...and no 'pre-cancerous' cells.

But he still needs to conduct more tests to determine the root cause of this severe anemia. He'll see Ella Bella and test her blood weekly. If this illness is indeed caused by a rare reaction to whatever caued her stomach illness, he tells us she's likely to 'spontaneously recover...' her body will likely just start producing red blood cells again, once it realizes it's no longer under attack. Until then, she may need more transfusions to keep her healthy. At some point, she may need steroids or other medications. But for now, he wants to see if her sweet, strong little body can fight this on its own.

It seems like just one day has passed since we first learned of her severe anemia. And it also seems like months. I can't explain it, but I lost all perception of time. I didn't check email or facebook. I didn't watch a single show on TV. I was either playing with the girls, trying to distract them and make life as normal as possible. Or I was completely overtaken with thoughts and fears...trying to prepare myself for what might come.

But as I sit here on my bed, looking at my computer screen for the first time in I'm not sure how many days, the one emotion I still feel, more than anything, is gratitude.

I'm grateful that the moment I told my boss and co-workers what was going on, they immediately offered to help, taking over projects and other work so I could focus on Ella.

I'm grateful that one of my co-workers immediately put me in contact with a hematologist from Children's -- a wonderful woman named Sara O'Brien, who has returned every phone call I've made to her within 10 minutes, explained to me what's going on in terms I can understand, and given me peace of mind that the very best doctors in the state, if not the country, are working on Ella's behalf.

I am grateful that my mother dropped everything, took off work, and spent this entire time with us, caring for and loving Kate as all of our focus was placed on Ella. I'm grateful for all of the prayers and calls and concern from our wonderful family and friends. I'm grateful that I happen to live here, in a country and community where I have access to doctors who can detect illnesses and conduct such sophisticated tests to analyze what's causing this scary condition.

I'm grateful for the tenderness and kindness that everyone at Children's Hospital has shown to Ella and to Chris and me. I'm grateful that Dr. Fred Ruymann has shown such attention to Ella's case, that he's called us within minutes of receiving conclusive results from every test. I'm grateful that he has invited us to even call him at home, at any time of day or night, if we have concerns about Ella's condition.

I'm grateful that I have Chris -- such a source of calm and strength and stability in times of crisis. I'm grateful for Ella Bella's sweet personality and I'm in awe today, more than ever, of every child's uncanny ability to focus on the positive, even in the worst of situations. Ella still has yet to complain about anything she's been through.

I'm of course most grateful that, whatever is causing Ella's health issues, the doctors believe it's something that will either 'correct itself,' or that it's something we can treat through blood transfusions and medications.

And I'm grateful that this week-and-a-half-long experience has given me yet another reason to remember what a very good life we've been blessed to live. Other than a steadfast faith in God, the health of the people we love really is the single, most important blessing we can be given. I'm grateful to be reminded of that.

I am most grateful to God for all of the blessings He has bestowed upon us.

Today we're trying to get back to normal. Vaccuming. Doing dishes. Making beds. Doing laundry. Playing outside. Eating meals. All these really simple and usually mundane activities that seem like the best, most amazing vacation on earth.

Tonight, I look forward to dinner, when Kate will throw all of her macaroni and cheese on the floor. I look forward to bathtime, when the girls will steal toys off each other and cry. I look forward to trying to rock Kate to sleep while Ella grabs onto my leg and says "I want yoooooouuuuuu, Mama," and to negotiating bedtime with Ella, until she finally relents to fall asleep at 10:30. I look forward to falling asleep with a prayer on my lips, and to having the gift of waking up tomorrow to live our regular, old, normal....glorious...life, again tomorrow.

Praise be to God for this amazing life we've been given.