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.

Tuesday, January 26, 2010

Musings on a Day by Ethan Moleski

**Please welcome our guest contributor, Ethan Moleski.

Today Ethan was not at school for lunch because Ethan was not feeling good. And when Ethan got home Meaghan was so tired that after dinner she was on the couch like a bunny in the winter.

She wanted to play Littlest Pet Shop and Ethan had to play it with her, but it did not last that long so then mom and Meaghan were asleep before you knew it and that was that.

Then Meg had a bubble bath and she liked it and then Ethan had dessert and he like it.

And the family got kaleidoscope glasses and when you look at Christmas lights you will see something and it will be cool.

Saturday, January 23, 2010

Home Sweet Home

January 21, 2010 marked a new day in our journey with Meaghan. The day we came home, reuniting as a family. The days leading up to Meg's discharge were filled with countless highs. Monday was our last dose of Vincristine for four weeks. Tuesday was our very last day of Radiation Treatment and our last regular ambulance transport. Wednesday morning we removed access to her port for the next month.

This past week was filled with countless preparations: duct work cleaning, carpet and furniture cleaning. Wednesday the medical supply company delivered all of her equipment and supplies. That afternoon some of my girlfriends descended on my home for wall washing and vacuuming and general organizing. We ate, cried a little and laughed a lot!

On Discharge Day, Madison and Ethan received a special exemption from the hospital H1N1 restriction policy. They were allowed to come up for one hour to see where Meg has been living for the past two months, meet the Inpatient Therapy team and tour the therapy rooms. Their reactions reminded me of my own sense of trepidation.

This place that I initially hated coming to daily, this place that was foreign, a constant reminder of my daughter's illness has now become filled familiar faces and routines. Our partings with the nurses, PCA's, doctors, therapists, social worker and clinical manager were not as bittersweet as they could have been. Meaghan will be continuing her outpatient rehabilitation at Children's hospital. She will have PT, OT and Speech therapies three times each per week.

I am looking forward to returning to our therapy sessions. We will frequently be able to visit the friends we've made at Inpatient Rehab and show our progress. We will be able to visit with our transport crews. They will continue to be a part of our journey, as will all our Radiation support staff when we return to St. John's for inpatient chemo stays.

We shared so many intimate family moments with our new "family" that I cannot imagine moving forward without their continued support. So with their blessing, love and devotion to our Meaghan makes her homecoming sweeter.

And her homecoming has been sweet. To date, it's been without medical incident. We've had our first visit from our palliative care nurse. Pastor paid a visit and had Meg in stitches as usual. (He's one of her favorite visitors.) Cousin Mary was in town and played with Meg and painted Maddy's nails. Aunt Tracie stopped in for a quick visit, too. All in all, it's been a busy, lovely weekend, with Sunday yet to come!

Meaghan is so reluctant to visit school or church. She's nervous to have friends visit. Interestingly, her speech started to return this week prior to coming home. Each day she speaks a bit more confidently, but as always, only on her terms. Her voice is small, restrained, uncertain. Much like how I feel about facing each day.

I'd like to end by sharing some pictures of Meg taken during the last couple of weeks:

Here's Brian (just one of our beloved Transport crew). On Meg's last day of radiation, he filled the back of the ambulance with balloons. We all wore Dora hats and sunglasses. All of us, but Meg that is.

This is Meg working on her Beads of Courage. It has been a wonderful tool to facilitate conversation about all she's been through. It is truly something to behold.

This is Meg working hard with Joy, one of the Physical Therapists. Despite all the hard work Joy requires of Meg, she always makes sure Meg has time for some fun games too.

This picture represents just a handful of medical personnel that cared for Meg during her radiation treatments. Pictured (starting left front) are Vicki, Cynthia, Kelly, Me and Sue. And these fine ladies are only a fraction of the whole team that has treated Meg over the last six weeks. We all shed some tears, but again, we'll get to see one another soon.

Everyone involved with Meg's care wants nothing more than to have her home with her family, despite their emotional attachments to her. We all shed a few tears, but more importantly, we rejoiced in Meaghan's amazing accomplishments and courage.

Throughout this journey, God has seen to it that we were blessed with caring, loving staff. Praise the Lord for blessing their talents!

And welcome home, Meaghan!!

Sunday, January 17, 2010

The Countdown

We are four days from discharge. It's 2:30 a.m. My night at the hospital. I wake to check on Meaghan because she is stirring and moaning. Somehow, during all her tossing and turning, she's compressed her feed tube enough to cause leakage at the coupling site. Her pajama bottoms and bedding are wet, but she sleeps through it.

After tucking some dry sheets beneath her and refilling her feeds with a calorie dense powder, her line occludes. The pump bleats it angry warnings. We change the feed bag and lines, turn on lights, check her tube site. Meaghan sleeps through this all.

This past Wednesday, we had our family meeting with the doctor, clinical nurse manager, social worker, program coordinator, and physical, occupational, speech and recreational therapists. She will come home with a hospital bed, bedside commode, wheelchair, walker, bath/shower transfer seat, feed pump, pole, and feeding supplies. We will also receive palliative support.

As the glare of the netbook screen illuminates this little corner of the hospital room, I rub down my face in exhaustion. This is going to be a full time job. Meg will require outpatient OT, PT and Speech three times each per week. How much improvement can we gain before maintenance chemo starts? Now that she has some fine motor skills, how do I fold in academic needs?

I am mom, substitute teacher, substitute therapist, home health care provider... And this is just for Meg! It's no wonder I'm filled with apprehension. The issue that is raising my irritation now is not only is Meg saddled with being an oncology patient, she's also a rehab patient. Why the double whammy?

Despite all this, I don't feel sorry for our family. I certainly feel we are being challenged, but I don't hang my head in pity. Maybe I should feel sorry for us, but really, let's look at the facts: my children have a mother and father who love one another, we have a roof over our heads, food in our bellies, reliable cars to drive, clothes to wear and fun toys to play with. My husband is employed and blessed with amazingly empathetic managers. We have a supportive family network and a very broad, supportive network of friends and church family as well.

Meg is the drum major for her own marching band of supporters: fiercely devoted ambulance crews; caring and nurturing medical staff at radiation; therapist "friends" who encourage, support and challenge her; nursing staff, social workers and doctors that go beyond caring and are invested in our family; prayerful family, friends and strangers... Truly, the blessings outweigh this curse.

While we feel a healthy amount of fear in bringing her home, I also know we are not alone. We never were.

Monday, January 11, 2010

Looking Back

The Child Life Specialist at Children's introduced a program to us called Beads of Courage. The program is used to track their treatment journey using beads as symbols of their accomplishments and courage. We've been in hospital for quite some time already and our CLF wanted to get Meaghan all caught up on her beading.

It's pretty amazing, everything she's been through these past 68 days. Once we are all caught up with our Beads of Courage I will post a picture of her necklace.

Here's the breakdown of bead colors, corresponding procedures and how many Meg has accrued.

Beige=Bone Marrow Aspirate/Biopsy 1
White= Day of Chemo 5
Orange=Port Insertion and Removal 1
Blue=Clinic Visit 0
Magenta=Emergency/Ambulance/Unusual 25
Silly Face= Hair Loss 1
Lime=Isolation/Fever/Neutropenia 1
Tortoise=Lumbar Puncture 1
Purple=Morphine/Dopamine/PCA 15
Silver/Black= Pokes 15
Glow in the Dark=Each Day of Radiation 24
Light Green= Tests/Scans/etc 8
Red= Transfusion 1
Aqua= Tube Insertion 6
Yellow= Each Day of Hospital Stay 68
Dark Green= Stem Cell Harvest/Dialysis/TPN 0
Silver= Surgery & Dressing Changes 4
Square Heart= Transfer to PICU 1

Yesterday we took Meg home for several hours. The kids fought with each other, played with each other... It felt a little normal. Bringing Meaghan home will be difficult for everyone. The hospital is safe, controlled. Meg isn't just a cancer patient, she's a rehab patient with significant physical limitations. Our family will undergo another period of adjustment, but right now I'll just focus on enjoying all being under the same roof! Even with all the sibling squabbling.

Before I forget, I'd also like to report some good news: Meg's weight is up from 19.1 kg to 20.9 kg in one week! I wish she were eating by mouth, but she's getting balanced nutrition and hydration through her tube. For now, I can table that fight.

Wednesday, January 6, 2010

Our Meaghan

The time between Christmas and New Year's was a time-lapsed sequence; seamlessly disjointed from reality. I wonder if that's how the past two months have felt for Meaghan. Her sense of the passage of time, until recently, was suspect. This week, however, she caught up with us.

New Year's Eve is Ethan's birthday. My mom spent the afternoon with Meaghan so I could join Ed, Madison and some friends for a couple of games of bowling. The four of us then went home for Ethan's traditional birthday dinner of Chinese food. I was back at the hospital by 7:00 p.m. As I tucked Meg into bed, I told her she would be coming home for a visit in the morning and we could sing Happy Birthday to Ethan.

She slept fitfully that night. In the morning, she was pale. Not long after she vomited. The day previous she struggled with diarrhea. I had to tell her she would not be able to go home for a visit. She shed a few big crocodile tears and hoarsely choked out, "I want to go home."

We were able to come home for a visit this past Sunday. She enjoyed beating the four of us at Uno, watching Ethan play Wii and just enjoyed being at home. On Monday, the waterworks started. Upon return from radiation and chemo we normally rest, watch TV or play a game before therapy starts. Instead, she sat facing the door and cried.

Once I ascertained she wasn't in pain, I went through all the regular questions: "Do you want Daddy or Ethan or Maddy or Nonnie or Poppie or Ribby or Jara?" "Are you angry?" "Do you feel sick?," etc. She just kept shaking her head "No." Finally, she pointed to herself, then pointed to the door. I asked, "Do you want to go home?" A vigorous nod "Yes," followed by heavier crying.

She wouldn't let me hold her, stroke her, kiss her or comfort her in any way. Nor would she let me sit on the sofa. She insisted I sit silently with her on the bed. So, for 45 minutes I watched and listened as she sobbed. Afterwards, she perked up and happily went to therapy. She has repeated the crying spells each days since, sometimes twice a day.

We are at the point in her therapy where we need to assess if the medical gains we are making compensate for the emotional toll. Most certainly, she is making progress in her physical therapy. The ataxia (wobbliness) affecting the left side of her body, however, is impeding the rate of her progress significantly. Regardless, Meg will require long term outpatient rehabilitation.

Next week we will have a family meeting to discuss Meg's discharge plans from Children's. This is will be a comprehensive meeting to discuss her medical and rehabilitative needs, including equipment required to safely care for her at home (feed pump, feeds and supplies, wheelchair, bath seat, to name a few). We'll also need to adjust our living arrangements at home. Ethan will have to move upstairs and share a room with Maddy short term in order to have Meg on the first floor next to our bedroom and the bathroom.

Tentatively, she may be discharged on January 22nd. I hate to even put that date out there because so much can change so quickly. If this plan comes to fruition that will give our family three and a half weeks together under one roof before we start the 42 week journey of maintenance chemo cycles. Three and a half weeks to reintegrate her into the family. Three and a half weeks...

How much laughter and joy and love can we stuff into three and a half weeks? Let that be our challenge together!

Monday, January 4, 2010

The New Curse Word

Madison has declared "cancer" a curse word.

This morning we had to tell Madison that her friend's mother passed away on Sunday morning. Five weeks ago, this humble woman of uncommon integrity and faith was diagnosed with cancer. She was a devoted mother and wife, actively involved in her children's schools. She loved and served the Lord openly.

My heart aches for her family. My heart aches for what my faith struggles to reconcile. Why a loving mother? Why my daughter? Why these two who bring so much love into the lives of others? I don't have an adequate answer and even if someone did have the answer I'm not up to hearing it right now.

Yes, my faith is strong enough to find peace in the saving grace of Jesus. But tonight, my faith and my mind need to silently yield to my emotions.