6.17.2009

Anniversary

One year ago today, Mollie was diagnosed with pre-B acute lymphoblastic leukemia. I haven't written much about her diagnosis and the events surrounding it, so here is the story from Matt's perspective (with a few details of my own, in italics).

I remember how hot it was that week. A brutal, still, humid kind of heat that you get in Augusta frequently, and for extended periods, in the summer time. By the second week of June 2008, summer was in full swing.

Lucy was first to get sick, I have a note in my day planner from June 10 that she didn’t sleep much that night. That was a Tuesday, and by the Thursday of that week, work had been skipped, meetings cancelled, and Sarah had made a visit to the emergency room with what we all thought was a bad stomach flu.

Friday the 13th of June all four of us were sick as hell. My recollection of that day is sitting at my desk at work with the door to my office closed, wondering if when I got up to go home I would throw up on the way to the parking lot. (Sarah: My recollection of that day was taking Lucy to the pediatrician to get her immunizations, and Mollie sitting in the exam room shivering because she was getting a fever).

On Saturday the 14th, I vividly remember being comatose on the couch watching a movie, “The Sting” w/ Newman and Redford, and drinking ginger ale. I know Sarah and I got very angry at Mollie, who was complaining constantly about being bored and wanting to go somewhere; it still breaks my heart that we yelled at her that day.

Sunday the 15th was Father’s Day. Mollie and Lucy got me a set of candles that came with a little soap dish shaped like a fish. I remember Mollie being so proud of having picked it out herself and of how it was my favorite color (blue). It is sitting on my desk right now, I have never opened it.

Also, some time on Saturday, Sarah got the girls dressed up in their fancy white dresses and took their picture in the front yard. This picture is one of my favorites of the two of them. It is my Facebook profile photo (and the header photo on Mollie's blog). If you look closely at it you can see redness in Mollie’s eyes and a little drainage from her nose.

(All weekend, Mollie had a fever that would go down with Tylenol, but would not go away. I called the advice nurse to determine whether to bring her to urgent care and she said we could bring her in or wait until Monday and bring her to her regular doctor. I didn't want to sit in the clinic when we were all feeling so terrible, so I decided to take her to her regular pediatrician first thing Monday morning. I think this decision was fortuitous because Dr. B and one of the nurses recognized right away that Mollie looked worse than she had on Friday, when we were there for Lucy's appointment.)

Monday June 16th was our 7th wedding anniversary. I recall being anxious to get back to work, however, since after losing a few days the previous week I felt behind and eager to get caught up. We had planned to go out to dinner later in the week to celebrate, and exchanged cards briefly in the morning before I ran out the door.

While Lucy and I were both recovered enough to get back into the swing of things Sarah and Mollie both were still quite sick. Sarah took Mollie in to see her pediatrician, Dr. Becton, first thing Monday morning. Dr. Becton was concerned about Mollie being dehydrated, and instead of doing many other different things (prescribing antibiotics, Tylenol, etc.) sent Mollie over to the pediatric emergency room at MCG for IV fluids and and bloodwork.

This is a decision that, in my mind, may have saved Mollie’s life. I have told this to many people.

Once in the ER, Mollie was given an IV in her right arm and administered fluids. At this point, Sarah had Lucy with her and was doing her best to keep the two of them calm and entertained, while wondering along with me where this was going. We could never have imagined where it would end up. I thought for sure it was a nasty case of the flu (after all, Sarah was so sick for so long) and that ultimately, the ER docs would send Mollie home with some medicine and we could get on with our lives.

We still don’t know the name of the ER attending physician that day, I have been meaning to try and find it on the paperwork we have. At any rate, that person ordered bloodwork to be done on Mollie after examining her, some time in the early afternoon.

I credit this decision also in saving her life. One thing we have learned is that there is no real playbook for the diagnosis, that it presents in so many different ways that there is always another course of treatment that could have been followed, that would have had a different outcome.

It was around the time that decision was made that Sarah called me at work with the news that Mollie was still in the ER and not likely to get released for another hour or two. I remember saying simply that I was on the way and getting up and walking out of work. I didn’t say anything to anyone, and my boss called me as I was driving downtown to the hospital. I remember telling him that I’m sure it was no big deal, but that I wanted to be at the hospital to help Sarah with Lucy.

When I arrived at the ER, Mollie was in a treatment room with an IV in her arm and watching a video on TV. Sarah was trying to keep Lucy calm and get ready to teach her biology class that night. Shortly after I arrived, one of the ER doctors came in and told us that Mollie’s blood work had indicated no presence of neutrophils. Sarah had to explain to me (after the doctor’s first, quick, attempt) that this meant that Mollie’s white blood counts were abnormally low.

This could be a handful of things, maybe something as minor as the virus we had all just been fighting, we hoped.

Sarah has a colleague at MCG who was a med student at the time. He came by that afternoon to the ER and asked us what the tests had revealed. I will always remember the look on his face when we told him there were zero neutrophils. I can’t even remember his name right now, but his reaction is burned into my mind like it was 5 minutes ago. He asked us if we were sure, that we didn’t just mean the neutrophil counts were very low? I could tell then that we may be headed for an outcome that we weren’t ready for.

The hardest moments for me over the past year have occurred when I have been alone, as in without Sarah. The first such moment was that evening. Sarah had to leave to teach her class and she had dropped Lucy off at home with a babysitter. I was with Mollie in the ER, still. The decision had been made to admit her for the night, until her fever subsided and her blood counts returned to normal.

A nurse came to transfer Mollie to a room in the pediatric ward of the hospital. Mollie was favoring her arm because of the IV and was very weak and lethargic. The nurse offered Mollie a ride upstairs in a wheelchair. Mollie said she was too scared to ride by herself, so the nurse suggested that I ride in the chair, with Mollie in my lap. That was OK with Mollie.

I remember the looks on the nurses’ and doctors’ faces as we were wheeled out of the ER and over to the hospital. Mollie was so sick, pale, dehydrated, and scared. She sobbed as we were rolled away, and asked when we could go home. I realized that I didn’t have the faintest idea when that would be, and started to lose it myself. The nurse could sense this and was trying to chat us up in an attempt, I think, to help me hold it together. It didn’t work. When we arrived at the children’s ward tears were rolling down my face, and I was trying to hide this from Mollie, who by then had calmed down.

As we were being settled in Mollie’s room, I remember two Child Life people coming in right away to distract / play with Mollie as I tried to pull myself together.

I didn’t know what to do, there were all of these nurses, doctors, people milling around. Looking back on it, it seemed as though they all had a secret that to this point was being kept from us. I was told that the plan at this point was to monitor Mollie overnight, and that bloodwork would be done again in the morning. I remember talking to Sarah on the phone as she was driving back from her class in Aiken. We asked each other how worried we were – and I said that I was very much so.

Mollie and I spent the night of June 16, 2008 in the hospital. Sarah had brought me a change of clothes and a pillow, and some toys and books for Mollie. In addition to the IV, Mollie also was hooked up to heart and respiratory monitors. Due to the fluids from the IV she had to go to the bathroom frequently during the night, each time I unhooked the monitors and wheeled her IV pole into the bathroom with her.

This was a routine that we would get very used to as Mollie since then has spent over 30 nights in the hospital, almost all of them hooked up to these devices.

Early in the morning of June 17th, bloodwork again was done and during the morning rounds Dr. Vega came in, introduced himself to me as Chief of Pediatric Oncology and told me that her white blood counts were even lower than the previous day. He scheduled Mollie for a bone marrow biopsy that morning to test for leukemia.

Sarah arrived later that morning after taking Lucy to daycare and we together held out hope that somehow we would get some get good news soon. I think by this time Mollie’s fever had subsided a bit and she looked better after a couple rounds of the fluids.

My next dark moment came when the nurse transported us downstairs to the pediatric OR for Mollie’s bone marrow aspirate. Sarah had gone to nurse Lucy at daycare and Mollie and I were alone together. The OR was busy that day and I vividly recall a child in one of the pre-op rooms screaming, just screaming, the kind of yell that just absolutely stops you in your tracks as a parent. It was a combination of pain, fear, anger, and most of all complete frustration. For her part, Mollie didn’t seem frightened so much as confused by everything (as I was) and anxious to be feeling better and to get unhooked from the IV and the monitors. As we sat in another pre-op room awaiting the anesthesiologist and surgery, I felt completely helpless. Here my daughter was in this condition and I couldn’t do a thing about it. I couldn’t even tell her for sure what was wrong. I buried my face in my hands and had a deep conversation with myself about how I was going to handle the next few minutes. About how I was going to handle the hour or so after that. And so on.

I have done this a lot over the past year. Sometimes it works.

As Mollie was wheeled away, at just before 1pm on Tuesday, June 17, 2008, I was as desperate as I had ever been. There were no answers, only questions. A doctor was going to take a sample of her bone marrow and test it for cancer. What in the world was happening?

The procedure was short and before long we were back upstairs in the room. Sarah and Lucy were back now, I remember being so happy to see them return that afternoon, and hoping that with this scary bone marrow procedure over and all four of us back together, somehow that this nightmare would end and we could all go home.

Dr. Vega returned that afternoon with an entourage, a resident, an intern, maybe a med student or two. I remember how all of them looked very somber, while Dr. Vega was more upbeat and animated. Mollie made a sour face when he came in, and I remember him saying to her that she should be nice to him, because they were going to be seeing a lot of each other and were going to be friends.

He told us the news in a very straightforward, yet gentle and compassionate manner. His diagnosis, while yet still officially unconfirmed, was that Mollie had leukemia. I remember that Sarah was standing up, and I was seated. Sarah said something like “OK…..” and I reached up and pulled her down so that she was sitting in my lap.

Dr. Vega had a little more to say but for the life of me I cant remember what it was. Shortly they were all gone, and the four of us were in the room alone, Lucy asleep in the stroller and Mollie coloring a picture that one of the Child Life people had given her. Sarah and I cried and cried.

I saved that picture Mollie was coloring that day (Dora The Explorer and Boots, for the record). It is up in her room, and is something that is very special to me. During the 8 subsequent days of hospitalization we tacked it up on the wall of her room, and for me it became a symbol of a child’s resilience in the face of something like this.

For an appreciation of beauty and of fantasy in light of circumstances so cold and harshly real.

To be as low as one could possibly be, but still be looking up.

Happy anniversary, Mollie, we love you so much!

10 comments:

  1. Thank you for sharing your story guys. Hope the next few "anniversaries" pass quickly, and that this day soon isn't anniversary anymore, but something in the distant past.

    Mollie looks so grown up in that picture.

    ReplyDelete
  2. I can't tell you how this story just made me cry and cry right here in my office at work. Thank you for sharing! We still think about Mollie often. Colby Grace talked about her so often I was just naturally drawn to her even before the diagnosis. Colby Grace told me she was sick after watching a movie with the class and she talked about the doctors putting her hair back in. I cried for your family that night and we started to add her in our nightly prayers. We would call her out by naming asking God to take care of our friend Mollie and her family.
    We both were so happy to see her come back to school to see and see her doing so well. I still keep up with you guys by reading your blog. We recorded the local news a few weeks ago and Colby Grace was thrilled to see her friend on the TV! She calls her name ever time the commercial for the medical center came on too! I think you guys are so strong, and Mollie just amazes me with her spirit!
    God Bless you all!

    Jennifer

    ReplyDelete
  3. Jennifer- Thank you so much!

    Mollie has been asking to play with Colby Grace at the park (must have a tire swing, she says). I have your number and will give you a call sometime soon to set something up!

    RGW- me too!

    ReplyDelete
  4. Wow. What a profound story to share and so well written.You both have been an inspiration in your strength and courage to overcome this amazingly difficult situation with such grace. Thank you for sharing with us. We're sheering you onward! Love,
    Lauren

    ReplyDelete
  5. Thanks for sharing you guys. You never really know what other people are experiencing, especially when they are as strong and united as your family, but I appreciate you sharing your story here. It was so easy to feel the fear, anger and confusion you must have felt that day and many after through your writing and it helps us all become a little bit more understanding, compassionate, and inspired by how amazing your little Mollie is. Hugs and kisses to the whole family for sticking together during this tough year!
    xo, Kelsey

    ReplyDelete
  6. so many of sarah's posts this past year have made me cry, but none so much as this one, matt. i know you haven't posted a lot here, but i have always felt your presence on this blog as sarah has tried to share a piece of your past year with us, and i know from what she has said, this experience, which so many of us as parents fear, has brought you two closer as a couple and the four of you closer as a family. that is so amazingly special.
    i wish we lived closer, so we could do more than send packages and cards. so i could reach out and give each of you a big hug. mollie and lucy are so lucky to have you both as parents. thank you for sharing this story.

    ReplyDelete
  7. Wow. Thanks for your perspective, Matt. I remember getting the call from CT about Mollie's diagnosis when I was at work, and wondering what you two were thinking, and how Mollie was understanding. I'm glad that this year has been as good as it has-- especially with how you have juggled it and how she has reacted to all of the treatments. I can only hope that it continues along the same path. Keep up the good work of understanding as much as you can about this illness, one another, and the relationship between the two; You are an inspiration to people everywhere-- even those who aren't sick. We love you all so much!

    ReplyDelete
  8. I have to admit that I have been a lurker every now and then via Nicola's blog for the past year. I have to thank you from the bottom of my heart for sharing this story as difficult as it is. As a parent, I can relate to your pain and confusion and finding joy in the small moments. As a social worker in the hospital, your story is a gift to me to help me understand more what people are feeling in those moments. Thank you. Even though we don't know each other, you and yours are in my thoughts (positive ones!).
    Take care,
    Chrissy

    ReplyDelete
  9. bsa--nicola's motherJune 22, 2009 at 10:06 PM

    I am also a lurker. But Mollie, we share the same anniversary. You have the most amazing parents and i am so very glad that your Dad shared so much with the rest of us. You have the most amazing family and it sounds as if all of you have strengthened your love and bonds in ways which few of us will ever fully understand. matt, thank you for sharing-and Sarah for adding. Hugs and kisses to all of you.

    ReplyDelete
  10. Thank you for sharing your story.

    Michelle

    ReplyDelete

Comments are always welcome!