Thursday, November 17, 2011

How in the World Did We Get to Here?

NOTE: These are all old pictures, and not from today. Mal is not up walking around yet, and does not have the ventriculostomy tube out yet.

Two questions have repeatedly been asked of Rachel and me since last Friday: "How did they know to give Mal an MRI?" and "Why didn't they catch it sooner?" The first question is a bit easier to address than the second. Because Rachel is a teacher and I am a ridiculously meticulous note taker, we began to take notes on Mal's condition, so as to better explain it to doctors. Since the notes have more information on the first question, I will tackle it first. That way, most people will get bored and not have to read my gross oversimplification while answering the second question anyway.

Mal's medical odyssey began the last week of September. On the Thursday of that week, September 28th, Mal began acting lethargic. She did not have a fever, and was not acting in any way funny other than not wanting to do things that normally interested her. We chocked it up to a mild virus and gave her some Tylenol. By Saturday of that week, the Tylenol was not helping to make her feel better, and she vomited for the first time. By Sunday, we thought it best for Mal to be seen by her pediatrician to get checked for an ear infection or strep throat, but she was negative. We still assumed she had a virus and she came back home. Over the next few days we watched in fear as Mal's symptoms got worse and worse. By Tuesday, Mal had stopped eating or drinking without being coerced and kept curling up into the fetal position and not answering any of our questions. We took her back to the pediatrician, who clearly saw something was not right. She sent Mal to St. John's hospital for some blood work to see if she had some signs of problems like leukemia, diabetes or meningitis. All of her lab work came back normal, so we were again sent home.

The very next day, Wednesday, October 5th, we had to take Mal back to the doctor. She had stopped eating or drinking anything, and we could not get her to respond to us at all. She just was lying on the floor, staring off into the distance. It was one of the most frightening times of Rachel and my life, as we clearly knew something was wrong. We took her back to St. John's where she was seen in the ER. They re-ran all of her lab work that had just been done a day prior, and saw no problems. Several ER docs noted that Mal was very stiff, though, and didn't move well at all, so they were afraid she had spinal meningitis. While we were waiting for a lumbar puncture, Rachel and I noted to the doctors that Mal had not had a bowel movement for four days, which was an unusually long time for her. The docs decided that since the blood work should have shown some signals of meningitis, they would get her an abdominal x-ray instead. The x-ray showed that Mal was severely backed up with feces throughout her entire intestines - so badly that she could not even pass gas. Mal was given an enema, and once that was completed she fell asleep. The doctors assumed that meant she felt better, so we were discharged.

The next day, Mal woke up, ate a big breakfast and then threw it up. We took her back to the pediatrician, and they noted that she was moving better and now responding to our questions, so we all assumed she was on the way back. However, Mal threw up her breakfast the next morning, and still was not pooping or eating the way she should. On doctor's advice, we gave Mal a home enema, and then tripled her dose of the laxative she was prescribed at the ER two days earlier. For the next week, we tinkered with her dose of laxative alternating between diarrhea and constipation. Mal's energy also never returned and she began to complain of not being able to walk. We wrote that all in our notes, and then told her that we knew she was sick but she had to be a big girl. Eventually, she either got up and walked or we picked her up and carried her. By a week later, Wednesday, October 12th, Mal had just not improved enough. Although she was responding to us again, and not constantly curling up into a ball on the floor, she was just not the girl we had come to know. Her energy was gone, she vomited at least once a day, skipped meals, was overly-sensitive, and slept much more than usual. We took her back to the ER, this time to Cardinal Glennon Children's Hospital for help. They gave her another x-ray, determined she was constipated, administered an enema and sent us home.

That was the point where Rachel got mad. I continued to assume that Mal's condition would improve, and since I was spending 12 to 14 hours a day at work, I would see snippets of the old Mal when I came home and assumed she was improving. That Friday night Rachel told me she had called a family friend who was working the ER at Cardinal Glennon. He told her that he would take Mal in the ER and admit her to the hospital to determine what was really wrong with her. He, like Rachel, believed that Mal's constipation was a symptom and not the cause of her problems. All parental guilt aside, I did not agree with taking Mal in, but Rachel convinced me to do so. Mal was admitted to Cardinal Glennon that weekend and stayed for three days.

Over the course of the three days, doctors gave Mal a battery of tests. She was given blood tests, neuro screenings, monitored, poked, prodded and bothered by doctors for 72 hours. Not a single one of them thought Mal looked well, but they all could not find a thing wrong with her test results. While in the hospital, Malorie threw up three of her seven meals. We were told it was probably because her intestines had been through so much stress over the past few weeks from the constipation. Doctors thought she showed all the signs of having mononucleosis, but her three tests for mono all came back negative. There is a high rate of false negative tests for mono is children under five, though. Mal was treated for dehydration, diagnosed with a mono type virus and we were discharged. We were advised to put Mal on a high fiber diet and told to wait it out.

For the next two weeks Mal showed signs of being fine. She would play, but in hindsight it was not the same as it had been before the initial problems appeared. As Rachel and I watched some videos with Mal in the PICU the other night, we were amazed at the pre-illness videos. She was so strong, vibrant, eyes wide and full of life. The videos during the illness, much like the "Take Me Out to the Ballgame" one I posted, showed a hollow shell of our Malorie. We had just been immersed in that kid for so long; we didn't recognize she still wasn't right.

By Halloween, Mal was back on the way down. She began throwing up in her crib first thing in the morning. What had been sporadic vomiting during this saga became more and more pronounced. Over the eleven days from November 1st through November 10th, Mal vomited 18 times. Over the entire time, the pediatrician had been very involved in how Mal was doing. We called her and asked her to see Mal again on Monday, November 8th. Our pediatrician recommended that we go to a gastro-intestinal specialist to better diagnose what had been going on with Mal.

The pediatrician estimated it would take a few weeks to get seen. However, Rachel's inside connections paid off, as she called a very good friend whose mother worked as a receptionist for a GI specialist. We got booked for two days later, November 10th, with Dr. Brady. Dr. Brady saw Mal in her office, and asked if we had gotten a CT scan or MRI yet. When we told her we had not, she ordered it. She also thought Mal was symptomatic of celiac disease, so we went on a gluten free diet for all of 36 hours. We went in on Friday to get the MRI and that is how we found the tumor.

The second question, "Why didn't they catch it sooner?" as I said, is a bit trickier. Doctors believe that Mal's tumor had been growing for several months, so any CT or MRI of the head would have caught it months ago. However, I truly feel that every medical professional did their very best to diagnose my child. At no point did I say, "Hey look, my kid is constipated and I think she has a brain tumor!" However, it is particularly disheartening that Mal was seen by neuro specialists over a month ago and no tests were run. In their defense, Mal was asymptomatic; her reflexes looked good and her pupils reacted normally to light. While the irrational parent in me does want to pin blame on someone for not catching this, I don't think that's fair to do so.

Instead, I think the better tactic is to focus on the heroes whose work eventually saved Mal's life. I thank God at night for Rachel being such a persistent and well-connected mother. I often give her grief for her slap-dash medical diagnoses (she told me a week ago that she thought Mal might be bulimic), but she is a protector, and she is the best wife I can ever imagine. Also, I give thanks for Dr. Brady going above and beyond her medical specialty to try to help Mal. Her MRI proved to be the deciding factor in finding out what was wrong with Mal. Also, I want to thank Jess, Travis, Jenna, Carol Z. and the host of other supporters that have long known that Mal wasn't right and weren't satisfied with sitting back and doing nothing. They are fighters, and it's good to have people like that on your side.

Finally, a note of caution for all our friends with hypochondriac tendencies out there: if you go to a doctor and say, "My kid is constipated and I think he/she might have a brain tumor!" they might institutionalize you. You might be crazy. But you might also be right.


  1. I just want your babygirl to feel good.
    I'm amazed at what all has transpired these last months, and so thankful you both stuck with it, thankful Rachel was a mother bear and thankful you supported her instincts. Your generous interpretation of everyone doing their best to diagnose Mal is a testament to how you are focused on the only important thing, and that's for Mal to be getting better and better every day.
    Monday at 6 pm I guess I had this euphoria, and an unrealistic feeling that, poof! The surgery was successful so now Mal was going to just feel all better right away. I remember you saying, Billy, that she would have a long haul to recover, and it just didn't sink in. I'm so thankful for all your supporters who are there to help all 4 of you. I really appreciate Grammie Sharon and her texting expertise with updates and pictures.
    I just want your babygirl to feel good.

  2. billy, both paul and i NEVER in a million years would've imagined mal had a brain tumor. EVER. and you know what we went through with jackson and his GI specialist, nutritionist, geneticist, and every other "ist" that there is. when i was on the phone with rachel a couple weeks ago and she was grilling me with questions for the GI specialist, it never once occurred to me that you two should request to have an MRI done on mal. it's funny, hindsight can play games with you. with the successful surgery being over, questions arise about everything prior to the surgery. the important part is that mal is safe, she is progressing, and she is so very loved. you're in our minds and our hearts. xoxoxox

  3. Thank you so much for sharing all of that information. I've read so many pamphlets and such in the Hem/Onc clinic that I knew vomiting could be a sign of a brain tumor, but I've never heard of constipation being connected! I'm so proud and impressed that you and Rachel were persistent, focused, and determined on getting a diagnosis for Mal. You are both such wonderful parents. I obsessively check the blog every day for updates and you guys are constantly on our minds.