Thank you for taking time to follow Meaghan's journey of healing as she battles Medulloblastoma, a form of brain cancer.

Meaghan, our five year old daughter, was diagnosed early November 2009 after an MRI revealed she had a 4 cm solid tumor in her cerebellum. The tumor resection, while successful, resulted in serious complications.

Cancer is a family affair and here I try to chronicle not only Meg's journey, but our whole family's as well.

Saturday, November 21, 2009

Next on Tap

First, the good news: Meaghan's lumbar puncture came back negative. Praise God! Yesterday, Meaghan was moved from PICU to the regular Pediatric Floor. While this is good news from a clinical perspective, we sorely miss the friends we've made in PICU. The entire staff provided Meaghan and our whole family with superlative care and compassion. We may not see them as much, but I know they are following Meaghan's progress and praying for a full recovery. In fact, one of Meg's PICU nurses came over and read Meaghan her favorite story, Olivia! May God bless them abundantly!

Additionally, after my request, the docs have secured two doses of H1N1 vaccine for Meaghan. She had her first dose today. The rest of us got vaccinated today, too. We haven't had the heart to tell Ethan he needs a booster in a month.

We look forward to a relatively quiet weekend. Meaghan has provided us with some additional smiles. She is still not talking and is very aggitated for most of the day. Sleep does not come easily or stay long. Our goal is to continue to get her to swallow foods by mouth and to work on chewing. The harder we work on getting her back to a regular diet, the closer we can get to bringing her home. Aside from occasional gagging, Meg has made peace with her feeding tube.

Monday will be a big day for us. At 8:00 a.m. we have our first radiation simulation. She will need to be sedated so they can make a precise form of her body. That will take up most of her morning. Additionally, she will be evaluated for inpatient physical therapy. Seeing as she still cannot hold her head up, sit up, chew, stick out her tongue, etc., I don't see how she wouldn't qualify for intensive inpatient physical therapy.

Inpatient physical therapy will mean a transfer to Children's Hospital. This will add a dimension of complexity to her treatment, because it will mean daily transfers between Children's Hospital and VanElslander for radiation treatment. She will have radiation five days a week for about six weeks. So every day, Meg will be transported via ambulance, sedated for treatments in the morning, then returned to Children's for physical therapy. Whew! Oh, and sometime next week she will have her full body MRI. Good thing Meg likes being wheeled around in her bed.

On a personal note: While I know it isn't expected, I am very sorry that I haven't had the time or ability to write personal Thank You notes to all of you that have blessed us with your time, your prayers, your gifts, financial support, bringing meals, doing yard work, chillin' with Maddy and E - all of it. Humbled doesn't adequately express how we feel. Thank you, thank you, thank you...

3 comments:

  1. Glad to hear the test came back negative! She's smiling that brings joy to my heart to hear... I pray she will continue to make progress.

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  2. No need for any thanks at all. We do it because we all love you guys and want the best for Meaghan AND because if it was any one of us you'd be there too

    Prayers continue, much love

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  3. Pastor Haller provided the link to your site and asked us to keep you in our prayers. We will certainly do that. We are members at St. John's in Buckley, Illinois, where Pastor Haller was before coming to your church. We cannot imagine what you are going through and appreciate the time you take to update the site. May you feel Jesus' strong arms around at all times. In his love, Jerry & Melanie Niemann, Paxton, IL

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