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.

Monday, November 30, 2009

Great News to Share

I can't wait to share the good news!

Meg's spinal MRI is clean!! Thank you, Lord!!

Also, Meg is working hard at physical therapy: she was able to support her weight upon her elbows while on her tummy. She could do this in one minute increments. Go Meg, get your little work out on!!

We meet with our Oncologist tomorrow to sign consents to enroll her in the protocol and discuss all the chemo side effects. That will be a long, sucky consult, but we forge on!

Thank you Lord for meeting me in my time of need. I was frustrated and angry, but I did not despair. Thank you for the multiple blessings today. Help give Ed, Maddy, Ethan, Meaghan and me an extra measure of patience as we redefine our family schedules.

Sunday, November 29, 2009

Not in Any of the Parenting Books

Saturday Night
Family Room
Mom, Ethan and Ribby (our Golden Retriever)

Ethan: (flops onto Ribby with a loud sigh) "Where has my childhood gone?"
Mom: (startled, turns to Ethan) "What? What do you mean?"
Ethan: "Nothing."

[Bedtime ritual ensues, teeth are brushed and covers are tucked in.]

Mom: "Ethan, what did you mean by "Where has my childhood gone?' Where did you hear something like that?"
Ethan: "Nowhere. I came up with it in my head."
Mom: "Well, what do you mean by that?"
Ethan: "What's the point of growing up? It [life] just gets harder and harder, then I have to leave [home]."
Mom: "That's not true. You don't ever have to leave, not ever."

I must have missed that chapter in the parenting books! What the hell do I do with that? There's so much that went unsaid between us. Those rich, milk chocolaty eyes just staring into mine, searching me.

I went to bed angry last night and awoke in a foul mood this morning. I'm pissed that cancer is part of Maddy's and Ethan's vernacular. I'm pissed that I can't protect them from this. I'm pissed that at the ripe old ages of 10 and nearly eight, they know Mom and Dad can't make it all better.

We go through the motions of trying to keep things "normal" and cancer free at home, but it's always there. It was there when the big kids and I started decorating for Christmas while Dad was at the hospital with Meg. It's there when a friend is picking them up from school. It's there when someone brings us a meal. It's there in our absences, too.

Saturday, November 28, 2009

Don't Look Away

When was the last time you were still? Quiet in the heart, mind and body? When was the last time you really paused to acknowledge the day's triumphs and blessings? In a normal setting that mindfulness takes a tremendous amount of discipline.

Generally, I'm easily irritated, emotional, driven to distraction by details and always focused on "getting things done." It would be so much easier for me, for us, to look away from our daily joys and blessings and become mired in anger and resentment. Anger and resentment are very self-serving and self-perpetuating emotions. Being angry feels good - for a time.

Many friends and family tell me they are inspired by our strength. Here's the dirty secret in all of this: I want to wallow in anger, grief and resentment! But, if we let ourselves dwell in those dark places that darkness will contaminate us and our older children, too. It is with dogged determination that we focus on those small, seemingly insignificant blessings and victories. (Something I failed miserably at before.) It is the same determination that fortifies us in our exhaustion, enables us to stand guard against the "What if's?" and the "Why us?"

We are not strong because it is easy or because we want to be. We are strong and emboldened in our faith because it is required of us.

Last night I took stock of God's blessings for us that day: safe travel during transport; small improvements during therapy sessions; a quiet evening with a calm Meaghan and the icing on the cake... Meaghan chewed and swallowed macaroni and cheese!!!

God is always good, we just need to stop looking away.

Friday, November 27, 2009

Working Out the Kinks

Today was our first run through with transporting Meg to and from Children's and St. John's for procedures and treatments. Things did not go well. Too many different factors were involved for me to detail. It wasn't for lack of planning, either. It's the execution of the plan that plain failed.

The senior social worker and program coordinator are very invested in making her daily transfers smooth. We spoke candidly and at length with them both. It's quite an undertaking getting her where she needs to be everyday, plus meeting her rehabilitation requirements.

Meaghan's procedure today was for the full spinal MRI and a baseline audiology reading, both requiring sedation. In fact, everything Meg has done will require sedation. This is unfortunate, but necessary to ensure the treatments and procedures are precise. Please keep the MRI pathology in your prayers. That's our last clinical hurdle to overcome before qualifying her for the ACNS-0331 protocol. This protocol may enable Meg to receive lesser amounts of radiation during certain portions of her treatments. It's all double randomized and quite involved, so please feel free to look up the protocol if you are interested in learning more.

Meaghan receives therapy services Monday through Friday, 9:00 a.m. to 4:00 p.m., with a break for lunch. She also receives a half day of services on Saturday. She receives two sessions of each of the following: speech, occupational, physical and recreational. She handles therapy sessions much better when Ed and I are not in the room.

To be perfectly honest, this break from Meaghan allows Ed and I to focus on either work or the mountain of paperwork and documentation we are accumulating regarding Meg's care. The break gives Meg, Ed and I an opportunity to miss each other and get refreshed. That's a difficult thing to admit let alone commit to writing.

I came across something that brought me comfort:

He leads us on by paths we did not know;
Upward He leads us, though our steps be slow,
Though oft we faint and falter on the way,
Though storms and darkness oft obscure the day;
Yet when the clouds are gone,
We know He leads us on.
He leads us on through all the unquiet years;
Past all our dreamland hopes, and doubts and fears,
He guides our steps, through all the tangled maze
Of losses, sorrows, and o'er clouded days;
We know His will is done;
And still He leads us on.
Nicholaus Ludwig Zinzendorf

Thursday, November 26, 2009

A Happy and Healing Thanksgiving

Happy Thanksgiving Everyone! It has been 21 days since Meg was admitted to the hospital. It has been 19 days since her surgery, hence 19 days since we've heard her say "Mom" or "Dad;" 19 days since she's walked, sat up on her own, or fed herself. Yet, we are thankful.

We are thankful for the complete resection of the tumor, for her clean lumbar puncture, for her smiles and occasional laughter, for lack of blood clots, infection, fever... Certainly, there are a great many things we grieve, but to dwell there is of no service to Meaghan.

Many people have been touched by Meaghan's situation. Our church family is uniting in a powerful way. We have received correspondence and prayers from many people we have never met. Distant family members are reaching out and reconnecting. The outreach is powerful, amazing and humbling.

Tragedies and crises are great mobilizers. They force us to look at our mortality, force us to reassess priorities and, hopefully, they force us to heal. The unfortunate byproduct of these crises is the cooperative, loving spirit is transitory. As a society we have short attention spans, other newer tragedies will come to the foreground and people will move on. And that's okay.

But Meaghan's journey of healing is a shared one. Her journey is of medical and physical healing. Your journey may lead you to a spiritual healing. Others may need emotional healing. Regardless, we are all on this journey of healing with Meaghan.

No matter the outcome, we pray that you share this journey of healing with Meaghan in your own personal way long after you stop reading our blog. Please help us ensure the focus of healing continues; shapes our interactions with one another; gives us pause before we speak.

On this Thanksgiving, November 26, 2009, we will be saddened that we aren't all together for a beautiful meal. However, if just for today, there is no room in our hearts for anger, hurt, or regret.

May the God of grace bless you and your loved ones abundantly. May your hearts be full of thanksgiving and the joy of loving fellowship.

Tuesday, November 24, 2009

New Digs

Meaghan was transferred to Children's Hospital today for inpatient rehabilitation treatment. She will be there for a minimum of three weeks. During this time no one under the age 18 can visit her. Madison and Ethan are very angry and hurt. The policy is in place to protect patients from H1N1. While we understand the need for these types of policies, it is an emotional set back for our family.

Now we begin the coordination of her nearly daily transport for radiation treatment. It's a logistic nightmare, but it can be done.

The move is very disconcerting. We need to reorient ourselves: new facilities, new staff, new doctors, new policies, etc. We are completely exhausted.

Bracelets are in!

Praying for Meaghan bracelets are in! If you are interested we are requesting a minimum $5 donation.

On the Move

Where do we even begin to recount all of Monday's events without getting bogged down in detail?

Meaghan had her radiation planning/mapping session. This took a little over one hour. All of the measurements of her mold will be sent to RI for a quality assurance check. Meaghan is slated to begin her radiation on December 7th, if not sooner. Also, her full spinal MRI is on Friday (keep that in your prayers). Here's an interesting bit of information: she has several pinpoint tattoos at various junctures on her trunk. These permanent tattoos are required to maintain precise delivery of radiation.

In typical Meg fashion, she took her time come around from the sedative and was generally quite irritable for the rest of the day. Not even a visit from Ethan and Maddy could raise her spirits.

Meaghan will be transferred to Children's Hospital for intensive inpatient rehab. She will stay a minimum of three weeks, receiving a minimum of three hours per day of therapy: speech, physical, occupational and recreational. We are excited for her because she needs it. We are hoping to get her transferred at some point Tuesday, otherwise we might be looking at going next week because of the holiday. The social worker and case workers just need to do the dance with the insurance company. Pray common sense prevails and we can expedite this. The stronger we can get her before radiation begins the better. We really enjoyed our conversation with the chief pediatric rehabilitation medicine doctor. The man speaks with common sense.

We've met with Meg's case worker and a bunch of really wonderful support staff. They listened to our concerns and we feel we've been heard. We have a high-level overview of the direction we're headed toward.

All Ed and I can do is continue to pray, try not to take our frustrations out on one another, and follow-up on all the plans in play for Meaghan.

Please continue to pray for Madison and Ethan. While Ethan doesn't articulate his struggles they break through nonetheless. Let me paraphrase some words from Madison: I'm too tired to be this angry anymore. Now, I'm just sad. I don't want to be a trooper anymore.

Just meditate on her words, they're a pretty good window into both of their struggles, heck all of our struggles.

Sunday, November 22, 2009

Hitting a Wall

I'm completely frustrated! She's not sleeping at all - one and two hour stretches punctuated by equal times of crying and screaming does not equal recuperative sleep! After benedryl, Trazadone, and one dose of Adavan not cutting it we gave her another dose of Adavan. Up side is she slept for six hours. Down side is she is back to not opening her eyes. So, for example, she is awake with her eyes closed and whining non-stop.


We are looking into some other options for her to help her relax and sleep. I've had candid conversations with the staff. Most pointedly, she has not really slept in two weeks. How on earth is she expected to handle radiation and chemo if she is not resting?

So many of you have expressed concern about how we are coping. I cannot speak for my husband, but I'm hitting a wall. I know the tumor had to come out, but nothing, absolutely nothing has prepared me for this type of recovery. I don't even know how to describe the frustration and anger I am feeling. Lo! to the person who pokes this very angry mama bear!

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...

Please Join Us!!

Thursday, November 19, 2009

Flying High

For the past two weeks Meg has been hospitalized, twelve of those days in the PICU. Ed and I usually take Maddy and Ethan to visit every other day depending on Meg's status. The visits are short and fraught with anxiety and disappointment for the big kids. Until today...

Today was absorbed trying to make heads or tails of what treatment options are available and which best meet Meaghan's long term needs. (That's an entirely other post.) Suffice it to say, Ed and I are beyond overwhelmed. Feeling more obligated than excited to have the kids visit, Ed brings the kids up after a birthday party. Boy, were we ever blessed!

Ethan takes Meg's hand and tells her to squeeze it and she does. He then goes on with some physical comedy pretending that Meg is crushing his hand. And Meg smiled! Excited by such a groundbreaking response, Ethan ups the ante by getting sillier by taking her hand and pretending to get punched by her. We were all rewarded with her big toothy smiles and her laughter. Her laughter...

No matter what happens in the coming months and years I want to sear into my memory this moment: The five of us together absolutely elated and full of love for one another!

Thank you Lord for this moment of joy to help sustain us.

Wednesday, November 18, 2009

Fully Accessorized

Meaghan's surgery went well. The medi-port is in. It sits over her sternum. It's a little smaller in diameter than a quarter and appears to be about 1/2 inch thick. The spinal is done. We should have those results by Friday. The feeding tube is in. She seemed to tolerate the anesthesia pretty well.

We're back in our good 'ol room in PICU. It's funny how much comfort you get from seeing the familiar faces on the PICU floor. Meaghan did get a bath, her hair washed and a massage yesterday. It really calmed her down.

A co-worker of Ed's sent pretty gel window clings. Madison and Ethan enjoyed putting those on Meg's window last night. It really does brighten things up.

Ed had a brief meeting with a radiation oncologist this morning. We will meet with him again to tomorrow to discuss Meaghan's radiation treatment options more in-depth. The list of side effects is absolutely terrifying.

Now that we are getting into treatment option scenarios we will begin the dance with the insurance companies. Just when I thought our minds couldn't possibly process anything else, we begin this indecent courtship.

Tuesday, November 17, 2009

Parade of White Coats

What a draining 24 hours! Meaghan was very fussy last night. I don't know if it was a headache, gassy tummy, surgery related irritability... We just don't know. After a long fitful night, Tuesday was a non-stop parade of lab coats: Meg's primary pediatrician, physical therapy, occupational therapy, PICU Attending doc and residents, Oncologist, Walk With Me doctor and nurse (patient and family support services) and a new surgeon.

Meaghan will have another surgery on Wednesday. She will undergo a spinal to determine if there are any cancerous cells in her spinal fluid and she will also have her medi-port installed. Surgery is scheduled for early afternoon. I'm nervous. We'll hopefully have the results by Friday.

Meaghan's progress continues to be painfully slow. She's still not chewing on her own. Unfortunately, we will have to deal with the NG tube again. They will be putting it in during surgery tomorrow. I know she's going to hate it. We need to get out of this nutritional deficit before we can simply resume maintenance. It's so frustrating for her and us. We continue to provide calorically dense and fortified shakes to her through a syringe.

She continues to make progress by increasing her level of alertness, but she is still not talking or smiling. She cannot sit up on her own, or really even hold up her own head. She is so frustrated by all of this! I would love for her to sit up and just tell us off - anything!

I am proud of my big kids. They are trying to hard to handle all of this. Madison worked with Pastor to design bracelets to sell to help defray medical bills. Maddy is so desperate to help with Meg's care. I'm glad she has something to focus on on. We all need a purposeful distraction.

We'd like to, again, thank you all for your prayerful support of Meaghan's healing. May God provide healing to the areas of need in your life.

Monday, November 16, 2009

Meeting with Oncology

We finished our first of many meetings with oncology. Medulloblastoma has been confirmed.

I thought I was prepared. Even though it was an overview, my head is swimming with information: 70% - 80% success rate, risks of radiation: neurological and cognitive impairment; hearing loss; dysfunction of speech pattern, critical to start radiation within 31 days of surgery, a year of treatment, spinal tap need on Wednesday, full MRI needed within three weeks...

We can't even get her to eat enough! We might have to go back to the ng tube. They called in speech therapy, physical therapy, occupational therapy... Our vibrant, willful, stubbornly shy five year old has been reduced to wet noodle. It's like having a newborn again. What must she be going through? What is her future? What will be her quality of life?

Ed is resolute, determined. I thought my daily sacrifices as a mother were taxing. I am not prepared, but who is ever prepared to have a life-threatening illness park itself in the middle of your life?

Sunday, November 15, 2009

Lunch as a Family

Maddy, Ethan and I went to church today. It's been eight days since her surgery. It was hard to walk into church, not because I didn't want to be there. It was difficult because I was unsure how many questions or hugs or looks of concern the kids and I could handle. I was particularly concerned how the older two would handle the attention after service.

We all did fine. No one broke down crying. People seemed to sense that a hug was adequate. It was helpful that the kids were dragging me out of church, excited to pick-up some food from Wendy's and head over to the hospital.

We ate lunch as a family. It was nice. Meaghan was a little more alert and watched her brother and sister. I was worried that it wouldn't be enough, but they seemed renewed and excited just to see her eyes looking around and sometimes watching them.

For now, I can call today a good day. We were all together for a brief time. No one fought. We chuckled at Maddy's and Ethan's antics to rouse their sister. It was some perverse sense of normal, but at least we were all together.

Saturday, November 14, 2009

No Sleep

It's almost 6:00 a.m. We've logged maybe two hours of broken sleep. The ng tube is really aggravating her. There's really nothing else they can give her. I want to scream from exhaustion, from helplessness... If I only knew what I could do to help her feel more comfortable. I laid in bed with her off and on. That would help a little, but not for long.

I hate the ng tube. We were at least getting some quiet periods of waking. Now she's so exhausted and irritable. And I don't blame her one bit.

Friday, November 13, 2009

Truer Words...

Our 10 year old was expressing her anger and frustration, "Mom, I really don't like God right now, {pause} but I know I have to love him. {long pause} That's jank!" Well, Maddy, I couldn't agree more!

The NG tube is in. We'd gone from longer restful periods, back to extreme irritability. This is going to be a long night. I'm angry and helpless, but she needs the nutrition.

As we await the full pathology report, we are trying to focus on the more immediate hurtles: warding off infection, increasing the sodium output in her urine, getting her to eat. We are also trying to focus on some loving things we can do: sponge baths and loving massages. It's always a fine line - not wanting to over stimulate her.

I continue to pray diligently for her health care providers.

Me? I'm starting to grieve for our old life... The tears are coming more readily now. To paraphrase my much too mature daughter: This is jank!

Still Waiting

Meaghan is still only half awake and very irritable when she is awake. No smiles or words yet. We are making very, very slow, but steady progress.

The doctor's have raised her drain to 20 which is good and the fluids are still nice and clear. Her sodium levels are still low, so we are aggressively treating that. Her nutrition intake is null, so we are forced to have an nasogastric tube for nutritional supplement. We know it is for the best, but it still feels like a setback.

Still no word from pathology. While we wouldn't be able to start treatment right now anyway, awaiting final confirmation is very difficult. We hope to hear something by Monday.

For now we are focusing on our day to day goals, like eating. We are praying constantly. Please pray for Meaghan's older brother and sister. They are really having a difficult time with all of this. Madison is angry with God and Ethan is just so easily frustrated.

Thank you for your unceasing prayers.

Thursday, November 12, 2009

November 12, 2009

First, many thanks to all of your for following our new journey. We are so thankful for our families' support. Thank you to our church family at St. Peter's Lutheran Church in Eastpointe for their outpouring of support to our family. Thank you to all of you we don't know for lifting our daughter and our family in prayer. It means so very much. So many of you have expressed a strong desire to help in anyway. Rest assured as soon as we determine what our needs are we will be soliciting the help that has been so generously offered.

Meaghan's progress is very slow. She has periods of wakefulness, but there has been no talking or smiling. She seems to either be half-awake, sleeping or crying and fussing. While I have been assured that this is normal given her type surgery, it is very difficult for us to watch. Currently, we are trying very hard to get her to eat on her own. If we are not successful with this very soon the doctors will have to look at a feeding tube or pic line.

We have not heard from pathology yet. We do realize that a correct pathology is key to a precise course of treatment. We are praying for all the health care workers involved in Meaghan's care; that they will be given a extra measure of discernment, compassion and wisdom in helping us guide her on her journey of healing.

I hope to post more encouraging news later today.

Wednesday, November 11, 2009

Amy's Updates

Below are the updates from Amy that have been posted on Facebook. Check back soon to see new posts as Amy will have the ability to post directly to this blog. Thank you!

November 6th - 10:08pm

First a big heartfelt thanks for all the prayers! We need them! I'm sorry I haven't been able to return all the calls and texts. Please know I appreciate your kindness. This will be my last post until we get Meaghan out of recovery. Thank you for your diligence. Blessings on you all.

November 7th - 1:46pm

Meaghan Update: Still in surgery, no updates other than she is stable. All they would say is it will be a while longer. Thanks for your continued support and prayers. We are nearing the brink in terms of anxiety. We will let you know when we are ready for visitors.

November 7th - 5:52pm

Update: Out of surgery. Stable. Very long surgery. Removed all of the tumor. Cancer. Medulloblastoma differential needs to be confirmed by pathology which will come in three to four days. Many more tests to come. Thank you for your continued prayerful support. Please allow us some time to process this as a family. I will post as I am able.

November 8th - 11:02am

Meaghan is currently having an MRI to confirm that the entire tumor has been removed. She will continue to be in Pediatric ICU for 4-5 days, perhaps longer. She is stable. At the recommendation of doctors, stimulation needs to be kept to a minimum. Visits are currently limited to immediate family (one at time) and pastoral staff. We feel very blessed by the outpouring of support and prayer. DON'T STOP!

November 8th - 6:00pm

Update: MRI is clean, no residual tumor. Meg is still not awake, but she is responsive. She is aggitated and being quite willful, thrashing around a bit. She still needs a good amount of oxygen, but she is stable. We will consult with oncology tomorrow.

November 9th - 3:36pm

Good News to Share: Meg is off oxygen. Her nasogastric tube is out. She is off Adavan and is receiving Delaudid every 4 hours. Her cerebral fluid is very clear, which is awesome. While, she is not "awake" she is more and more responsive. We get to lay in bed with her and hold her in the recliner. She is finally resting comfortably. No news on tumor pathology yet.

November 10th - 10:46am

Update: this should be a quiet day. We don't expect to hear from pathology until tomorrow. We are working on swallowing and waking up. I miss seeing her smile and those beautiful blue eyes! Please send up a special prayer of thanksgiving for all our health workers and the families that share them. We feel so blessed and supported! God is good!

November 11th - 4:30pm

Update: Meg will be in ICU through the early part of next week. Her eye movement is a little more coordinated today. She seems very sensitive to stimulation. She is experiencing cerebellum mutism, which is normal, but greatly adding to her irritability. No word from pathology. I am asking for an extra measure of patience and grace as we wait for a glimpse of our old daughter - a meaningful look or a smile.