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Friday, January 9, 2009 7:17 PM CST

Wow...hard to believe it's been so long since our last entry! Matthew started HS in the fall and is doing well.

We had our annual walk in OCT and raised over $11,000 for brain tumor research, bringing our 6 year total to over $106,000!

We are supposed to see Dr. Carson in March for Matthew's check-up, although I still have to schedule our appointment (which I need to do soon).

This past year has been a wonderful blessing with Matthew's health. I just pray we have many more years filled with good health and happiness for Matthew.

Wishing you all the best in 2009!

Andrea

Friday, August 1, 2008 8:06 PM CDT

Our walk is scheduled for SAT., OCT 18!

Thursday, June 12, 2008 10:50 PM CDT

Tonight Matthew graduated from 8th grade. I was so proud of him and thankful to God for the miracle of seeing him graduate!

Matthew was awarded a President's Academic Achievement Award. He received a pin, a certificate (signed by Geo W Bush) and a letter from George W Bush on White House letter head. Matthew also received a $100 savings bond from his 3rd grade teacher. Retiring teachers are given
money, which they in turn award to a student of their choice. Matthew's 3rd grade teacher, Mrs. Eastlack, chose Matthew. It was a moment I will always cherish. I am so grateful to Mrs. Eastlack for honoring Matthew.

May God bless Matthew with many more achievements-

Andrea

Sunday, March 30, 2008 8:12 AM CDT

Matthew and I went to Johns Hopkins yesterday to have his latest MRI reviewed. Dr. Carson told us that, when compared with Matthew's last MRI from OCT 2006, Matthew's tumor is stable, the cyst is still decompressed, and there is less enhanced area (which is a good thing).

Dr. Carson is amazed at how Matthew has regained so much of his strength and mobility. 2 years ago Matthew could barely raise his right arm off his lap and hardly move his fingers. When Dr. Carson asked Matthew to raise his arm yesterday, he was astounded when Matthew raised it as high as his left arm--and could move all of his fingers! Dr. Carson said it is rare that people regain their strength the way Matthew has.

The other great news is we don't need to go back for a YEAR! We don't even have to have a CT scan in 6 months. Just an MRI in 1 YEAR! I told Dr. Carson as much as we like him, I hope we don't see him before then :)

I look at Matthew and know, without a doubt, that God answers prayers. Matthew is truly a testament of God's healing power.

--Andrea

Thursday, March 13, 2008 7:44 PM CDT

Sorry for the lack in updates. It's been a busy few months.


After a 4 year battle with bladder cancer, my father-in-law passed away Friday, March 7.


As for Matthew, he's doing well. He has a MRI on 3/25 with our appointment at Hopkins on 3/28. We're praying for good news. Matthew hasn't had a MRI since prior to his radiation. It would be great to hear his tumor is smaller....gone...dying...dead!


Rest in peace William Anthony Passarella.

Thursday, November 1, 2007 6:35 AM CDT

Just a short note--before I have to get the kids up for school--to tell you we had a great day for a walk. The weather was beautiful. A little windy (which makes setting up the auction items difficult), but no rain.

To date we have raised over $13,000 this year, bringing our 5 year total to approximately $95,000.

The International Awareness Week was a success. This is from Denis Strangman, IBTA chairman:

"Throughout the year and during the Awareness Week itself there have been 49 walks, involving 17,628 people in 17 countries, who walked a collective distance of 89,843 kms (more than twice our target of 40,000 kms - once around the Earth), and who raised over $1m for brain tumour research and support in their respective countries. Results
from another 23 walks have still to be received and tabulated."

It feels great to contribute to something so much bigger than ourselves. And for all of you who came out and supported our cause, we thank you.

It was amazing to see Matthew this year--so different from last year. Last year he was so tired and feeble looking in his wheelchair. This year he looked so strong.

As each year, at our walk I meet special women who have lost their child(ren) to brain tumors. And, as always, Matthew's Miles is dedicated not only to the life of Matthew but the memory of so many precious children. I will always do my best to honor those children who have suffered from this disease.



Happy Halloween!

It's amazing to see how things can change. As I walked the kids around the neighborhood tonight, I remembered last year--pushing Matthew around in a wheelchair, wondering if he'd ever get to really enjoy trick-or-treating again. (Actually Matthew spent the past 2 years in a wheelchair).

Tonight I watched him run from door to door--even carrying Luke's bag. (Luke was a gorilla and his gorilla hands were a bit too big to hold a bag). Matthew bragged to me how he could even carry each bag with only 1 finger each.

As I watched Matthew walk up to the doors, I thanked God for this amazing gift. What a beautiful sight to see!

We drove to our old neighborhood to visit some friends who we haven't seen since last Halloween. Our one ex-neighbor told me seeing Matthew walk up his driveway was the best thing he had seen all night. He even gave Matthew a hug. He was amazed to see how great Matthew is doing.

I am so thankful for this wonderful blessing.

Andrea

Sunday, September 30, 2007 10:12 AM CDT

I picked up Matthew's scans yesterday to send to Dr. Carson. I read the radiologist's report and was elated to read:

"the cystic lesion currently measures 2.6 x 1.3 cm, decreased in size from the prior examination on June 20, 2007 at which time it measured 3.3 x 2.2 cm....The ventricle is slightly decreased in size when compared to the prior examination."

I will let you know when we receive the "official" report from Dr. Carson, but I expect nothing but good news!

I am guessing we'll get an MRI in 6 months; at that time we will know more about the actual tumor. The CT scan really only measures the cyst, not the tumor.

I keep visualizing the day Dr. Carson walks into the room and tells us, "the tumor is gone!"

God is good!

--Andrea

Wednesday, September 19, 2007 11:36 AM CDT

Happy 14th Birthday, Matthew!

Monday, September 10, 2007 8:29 PM CDT

Well, no news is usually good news and so has been the case with Matthew and our summer.

We had a wonderful summer. Matthew was able to really enjoy the pool and play with his friends. We said good-bye to a good friend, Davie, who moved back to Wyoming a few weeks ago. Hopefully he will be back next summer to visit his aunt and grandmom. He spent last school year in New Jersey (across the street from us) while his dad served in Iraq. He was a great friend to Matthew and Luke and we miss him!

This summer we enjoyed a week at the shore and had a great time with my sisters.

Last Wednesday was the first day back to school. For the first time in 2 years Matthew was able to walk into school. I was in tears and just had to take a picture of Matthew walking into the building! Matthew told me so many people were surprised to see him walking--I know he felt great about that! Matthew's one teacher told me she
nearly cried when she saw him walk into her classroom. It was a wonderful moment--one I will always cherish and thank God for.

This past Saturday we enjoyed a Make-A-Wish picnic at the Funplex in NJ (they have a picnic for all NJ Make-A-Wish families once a year). The kids and I had great fun on the bumper boats--squirting water at each other--Matthew was really laughing and having fun! We also had fun playing 2 rounds of lazer tag. Luke and Matthew both beat my score. I'm embarrassed to say Luke scored 7450 points,
Matthew 3050, and I had a measly 650!!! It was a great day and we are so grateful to Make-A-Wish. They are a wonderful organization.

Matthew's next CT scan is scheduled for Monday, SEPT 24. Since he is doing well it is our plan to just mail the scans to Dr. Carson. Assuming that all still looks good, we will get a MRI in 6 months.

I am looking forward to a great year. Matthew is now in 8th grade and this will be his last year in this school--he has been in the same school since kindergarten! The school has a graduation ceremony for the 8th graders so, needless to say, we will be having a HUGE party next June. :)

One more thing: Matthew's Miles is scheduled for SAT, OCT 20 at 11:00. I have a lot of work to do on that and it'll be here before I know it! A friend of mine is designing a logo for us--one that will remain constant from here on out. I would like for Matthew's Miles to become a 501c3 organization-hopefully by next year-and figured we need to have an official logo :)

I'll keep you posted on the walk details and Matthew!

--Andrea

Friday, July 6, 2007 2:38 PM CDT

It has been 2 years--2 years!--since Matthew walked into the hospital for one of our appointments. Today he did just that! I took the wheelchair and asked Matthew if he'd like to use it but he said "No, I'll walk." What music to my ears!

Our wait wasn't too bad today--a little over an hour before we got to see Dr. Carson. When Dr. Carson walked in the room he said, "God is good!; Matthew's scans look great--the best I've seen in a long time." Now it is only a CT scan, which really only shows the cyst. To know what's going on with the tumor, we need an MRI. However, it's still great news :) And since Matthew is doing so well, I'm sure the tumor is at the least, stable.

There is virtually no fluid in Matthew's cyst and the cyst itself has shrunk! Dr. Carson told me he's seen a lot of brainstem tumor patients in his years, and he can tell me that Matthew is definitely a miracle. He then went on to say he feels the Lord has some special work for Matthew to do. I feel the same way!

The plan is to have a CT scan again in SEPT. If Matthew is still doing "grand", we don't have to go to Hopkins--we can just send the films to Dr. Carson. The plan is to then have a CT scan once a year and a MRI once a year (one every 6 months).

The best news for Matthew was that he didn't have to be "tapped." He gave me a smile when he heard the news and said "I had my fingers crossed the whole time." I told him I think we should say a prayer of thanks to God, too!

I knew 6 years ago--after Matthew's final diagnosis--that he was a miracle and that the Lord has something special in store for him. Even if it's just to tell our story and give hope to others.

Looking forward to our weekend together.

God bless us all-
Andrea

Tuesday, May 22, 2007 11:52 AM CDT

**I finally updated the photo page with some new pictures**

Ten years ago today we welcomed Luke Owen Passarella into our lives. Luke was two weeks late, so my doctor decided to induce labor. Nice thing about that was being able to “plan” for someone to take care of Matthew. My mom came to our house that morning and picked up Matthew to spend the day with her and my dad. I’ll never forget Matthew walking to her car, thinking next time I see him he’ll be a big brother!

Luke’s labor and delivery were quick! I think they induced me around 11:00 am and he was born after 2:00 pm. Two short pushes and Luke was born. Luke weighed 9 lbs., had LOTS of dark hair and long fingernails.

When Matthew saw his little brother, he had such a look of awe on his face! He held Luke so gently and lovingly….and I’ll never forget Matthew getting on his tiptoes so he could look at his baby brother in the little bassinette.

It was such a wonderful time in our lives and brings so many warm, happy memories for me.

Happy Birthday, sweet Luke.

Saturday, May 19, 2007 6:07 PM CDT

I wanted to share with everyone some “good” news. My family has been selected as a First Prize Winner in the Family Fun Magazine’s Family Volunteer Contest for our work in organizing Matthew’s Miles Walk for a Brain Tumor Cure. Family Fun will award our charity $1,000 which will be used for pediatric brain tumor research. We will also be mentioned in the October issue of Family Fun.


-Andrea

Wednesday, May 16, 2007 7:59 PM CDT

Jack called me this afternoon at work. He told me "Luke has some bad news." I thought he was going to tell me I wasn't picked to chaperone his field trip next week. Luke got on the phone and his little voice said, "Ayinde died."

Ayinde was a classmate of Luke's. He was diagnosed with leukemia last school year. Ayinde ended up going to Johns Hopkins for treatment. Because Ayinde's treatment required him to be in the hospital for a very long time, his family moved down to the Baltimore area.

Last summer, during one of Matthew's hospital stays, we decided we'd go look for Ayinde. We found his room, introduced ourselved to his family, and visited a while. I become depressed after only a few days in the hospital. This family endured hospital stays of months at a time.

During our visit, I asked Ayinde if he'd like Luke to visit and he told me yes. So, a week or 2 after Matthew was released, I packed up the kids and we headed down to Hopkins for a visit with Ayinde. Luke took some video games that they could play. Luke sat on the bed with Ayinde while they played Dragonball Z. I don't think I'll ever forget
that day and the image of Luke and Ayinde sitting together. When we left, my heart yearned for Ayinde to leave that room too.

This past fall my company had a contest--for kids to draw a
picture---the theme: helping others. I told my kids to draw a picture of how you could help others. Luke drew his picture. When I asked him what it was he told me "it's me visiting Ayinde in the hospital." Luke didn't win a "prize" from my company for his drawing--but boy, he gained so much more than winning a gift card.

Ayinde endured months of chemotherapy and a bone marrow transplant. He was supposedly home for the past 2-3 weeks--released from the hospital to enjoy the summer and look forward to going to school next year. His counts were good but last Saturday he passed out and stopped breathing. He was taken to the hospital but on Sunday, Mother's Day, he passed away. The cause: an infection throughout his
body.

Ayinde was a sweet boy with a smile that melted your heart.

Godspeed sweet Ayinde.

Monday, April 23, 2007 1:30 PM CDT

I just wanted to share with you our wonderful weekend. A little background first: since Matthew was a little boy, it was his "thing" to run after my parents' or sisters' car when they'd leave our house. The last time Matthew was able to do that was spring/summer of 2005--nearly 2 years ago.

Well, this past Saturday night Matthew, Luke, and Emma had some friends over. Matthew and I walked their friends outside when their grandma got to our house to pick them up. As their car pulled away, Matthew took off down the sidewalk, chasing their car and yelling goodbye. Matthew walked back to me with such pride and joy in his eyes. It has been so long since I've seen that look. Matthew hugged me and said "it's been so long since I've been able to do that." I nearly cried, holding him in my arms--thanking God for that wonderful blessing.

I told Matthew he would have to do that for my sisters when they came over on Sunday. So, last night, as my sisters were pulling out of our driveway, Matthew went down to the sidewalk. As they were backing up my one sister, sobbing already, asked if Matthew was going to do what she thought. I told her wait and see. As they drove off, Matthew ran next to them. My sisters (who just returned from a week in Disney--the most magical place on Earth) told me seeing Matthew chase them was more magical than Disney. I have to agree with that! It is something we've been praying 2 years for to happen.

Although it has been a difficult road, it makes you realize the hard battles do make the victories even sweeter. I just wish every parent who has a child suffering could see them regain their health on Earth.

Praising God for a wonderful weekend-

Andrea

Tuesday, April 17, 2007 4:14 PM CDT

This weekend Matthew went outside and was running around, playing with his friends. What a great sight to see! It has been almost 2 years since I've seen him do that, so it was a wonderful moment for me. Of course I had to get out the video camera, which annoyed Matthew, but it was a moment worth capturing.

Yesterday, as I was driving over the bridge on my way to work, a large chunk of ice fell from the top of the bridge structure and completely damaged my windshield. I heard this loud "boom" and next thing I know my windshield is smashed--pieces of glass all over the dashboard and seat. When I got to the bottom of the bridge I noticed a policeman pulled off on the shoulder, so I pulled over to report my incident. I continued onto work but, after seeing my windshield sway when the wind blew, I didn't think it wise to drive it home after work. I was afraid the windshield would collapse in on me. What a frightening experience. (I posted a picture under photos).

Of course I realize how fragile life is, but it is a strong reminder that you don't know when a good-bye will be your last.

~Andrea

Sunday, April 8, 2007 0:03 AM CDT

Matthew 28:1-10
After the Sabbath, at dawn on the first day of the week, Mary Magdalene and the other Mary went to look at the tomb. There was a violent earthquake, for an angel of the Lord came down from heaven and, going to the tomb, rolled back the stone and sat on it. His appearance was like lightning, and his clothes were white as snow. The guards were so afraid of him that they shook and became like dead men.

The angel said to the women, "Do not be afraid, for I know that you are looking for Jesus, who was crucified. He is not here; he has risen, just as he said. Come and see the place where he lay. Then go quickly and tell his disciples: 'He has risen from the dead and is going ahead of you into Galilee. There you will see him.' Now I have told you."

So the women hurried away from the tomb, afraid yet filled with joy, and ran to tell his disciples. Suddenly Jesus met them. "Greetings," he said. They came to him, clasped his feet and worshiped him. Then Jesus said to them, "Do not be afraid. Go and tell my brothers to go to Galilee; there they will see me." (NIV)





Christ The Lord Is Risen Today

Christ, the Lord, is risen today, Alleluia!
Sons of men and angels say, Alleluia!
Raise your joys and triumphs high, Alleluia!
Sing, ye heavens, and earth, reply, Alleluia!

Love’s redeeming work is done, Alleluia!
Fought the fight, the battle won, Alleluia!
Lo! the Sun’s eclipse is over, Alleluia!
Lo! He sets in blood no more, Alleluia!

Vain the stone, the watch, the seal, Alleluia!
Christ hath burst the gates of hell, Alleluia!
Death in vain forbids His rise, Alleluia!
Christ hath opened paradise, Alleluia!

Lives again our glorious King, Alleluia!
Where, O death, is now thy sting? Alleluia!
Once He died our souls to save, Alleluia!
Where thy victory, O grave? Alleluia!

Soar we now where Christ hath led, Alleluia!
Following our exalted Head, Alleluia!
Made like Him, like Him we rise, Alleluia!
Ours the cross, the grave, the skies, Alleluia!

Hail, the Lord of earth and heaven, Alleluia!
Praise to Thee by both be given, Alleluia!
Thee we greet triumphant now, Alleluia!
Hail, the resurrection day, Alleluia!

King of glory, Soul of bliss, Alleluia!
Everlasting life is this, Alleluia!
Thee to know, Thy power to prove, Alleluia!
Thus to sing and thus to love, Alleluia!

Hymns of praise then let us sing, Alleluia!
Unto Christ, our heavenly King, Alleluia!
Who endured the cross and grave, Alleluia!
Sinners to redeem and save. Alleluia!

But the pains that He endured, Alleluia!
Our salvation have procured, Alleluia!
Now above the sky He’s King, Alleluia!
Where the angels ever sing. Alleluia!

Jesus Christ is risen today, Alleluia!
Our triumphant holy day, Alleluia!
Who did once upon the cross, Alleluia!
Suffer to redeem our loss. Alleluia!

Sunday, April 1, 2007 10:23 AM CDT

Just a quick update: Matthew continues to do well. The other night he took our dog, Sadie, for a walk! I was a little nervous about him falling..but he did great! I walked behind him but he was ok. It was a great thing to see and I praise God for that! My sister took Matthew and Emma to the playground yesterday and she was amazed at what he could do...he pulled himself up on the even bars using both
his arms.

I spent yesterday in the ER. I was on an antibiotic for a sinus infection and on the last day of my rx, developed a *nasty* rash. It was only worse by Sat. and, after doing some research on the internet on Bactrim (my antibiotic), I got myself to the hospital :) I read about SJS where the rash blisters and then your skin burns off. Very serious. My dr. said it was very rare but, if you know my family
history, you should know that comment brings me little comfort. My family seems prone to the rare medical conditions. The ER dr. said it was good I got there when I did. They gave me a shot of decadron and am on a decadron taper for 6 days. My rash looks much better today.
At least I don't scare myself when I look at my arms :)

My goal is to videotape Matthew walking the dog. I will then have Jack put on the web for people to see, for it is something I'd love to share with everyone.

In closing, since today is Palm Sunday, let me share this prayer:

"On this day of great rejoicing, Lord Jesus Christ, when we welcome You as our King and Savior, we also walk in the shadow of Your cross. Hosanna! we cry. Blessed are You who come in God's name to save us. Hosanna! Strengthen our faith on this Palm Sunday so that when the time comes to carry the cross we might still call out to You with heartfelt praise. Give us the grace and the courage to follow You this
Holy Week from death to resurrection, from darkness to the fullness of light. We need You, Lord Jesus Christ, our Savior. Hosanna!"

Amen

Thursday, March 29, 2007 4:04 PM CDT

Last night we all went for a walk--even Matthew! We try to take the dog out for a walk at night, and I usually push Matthew in the wheelchair. Last night Matthew told me he wanted to walk. When he got tired, we turned around and went home--but he did really well. I was nervous about him falling and when I went to hold his arm he told me he was ok. I know he must feel ok because he would ask me for help if he needed it. He even walked our dog for a little (I did hold his one arm at that point). It was just so great to see him walking!

Friday, March 16, 2007 3:03 PM CDT

We got home from Hopkins about an hour ago. Matthew had 15 cc's of fluid drained from his cyst. We were planning to stop at 15, because when we do more than that his taste buds seem to be affected. Well, the fluid just seemed to stop at 15 cc's--so maybe it's all been drained??? This was the last time we will see Ann, Dr. Carson's assistant. We have been in her care for the past few years and we will miss her. It is nice to have someone who knows your child.

The plan is to go back in 3 months.

Matthew is continuing to do well--which is such a blessing. I pray for his continued improvement.

I am glad we made it home safely. We saw a few nasty accidents---one only a few miles from our home.

Praising God for all that is good in our lives-

Andrea

Sunday, February 25, 2007 12:00 AM CST

Just wanted to share an e-mail I received from the Supervisor of Special Services at Matthew's school:

++++++++++++++++++++++++++++++++++++++++

Hi Andrea I just spoke to Laurel Delmar, Matt's PT and she is very pleased with his progress especially improved strength and vitality. Matt would like to not use the wheelchair in the afternoon and she thinks he's ready!

+++++++++++++++++++++++++++++++++++++++

Let me tell you, that definitely made my day!

MATTHEW'S MILES 2007:

We are tentatively scheduling the walk for Saturday, OCT 20. With so many things up in the air who knows where we'll be by OCT but, if we're still around, that'll be the date of the next walk.

The exciting news is that we will be working with the International Brain Tumor Alliance IBTA A few weeks ago a woman from England, Kathy Oliver,(whose son also has a brain tumor) called me regarding their organization. They are promoting an International
Brain Tumour Awareness Week project - running throughout 2007 up until the end of October - the Walk Around the World for Brain Tumours. They are hoping that organisations and individuals who are doing sponsored (or unsponsored) walks will "donate" their mileage to be uploaded to a professionally designed Awareness Week website. The goal
is to reach a target of 40,000 kilometres (25,000 miles) which is the circumference around the World at the Equator.

So, the mileage walked in Matthew's Miles 2007 will be "donated" to this great awareness project!

It is amazing what they're doing to create awareness, and I urge you to take a look at their website IBTA
With hope-
Andrea

Monday, February 19, 2007 9:35 AM CST

Matthew continues to do well--getting around more on his own and using his right hand a little more. Last night he was coloring a dragon poster he got for Christmas, and it was so great to see him use his right hand to take the lid on/off the markers!

He gets a CT scan done on March 4 and then a trip to Hopkins on March 16 to drain more fluid. At this point, we are still not sure when his next MRI will be as we are trying to get some help (medicaid) with the co-insurance amount we owe. I did go to the social service office the other week---spent 2 hours there filling out paperwork, however, I don't know if we will be eligible for medicaid. You really have to have nothing in order to receive help. Plus, I'd have to go back every 3 months and reapply. It is a nightmare. If we ever do get in a position, healthcare is something I will need to try and do something about :) There seems to be no help for the middle class working person. It is so frustrating to get a bill for $100-$200 for some doctor you never saw....it's just a bill because they "read" a CT scan/MRI...yet you never saw the report or the doctor...ever!

Thanks to a very generous person, we've been able to pay off a lot of our medical bills from Matthew's hospital stay in OCT which is of great comfort!

On another note: we found out this week that we will soon say good-bye to Dr. Carson's assistant. This will be our 2nd assistant we will see go. It is comforting to have someone who understands your child. We will miss you, Ann!

I have "met" so many other children in the past few weeks with diffuse pontine gliomas--the kind of tumor Matthew was first diagnosed with. I wish every parent would have the same miracle as us. Every day of these past 6 years have been such a gift. Please pray for our new friends Grace, Elena and Matthew M. And for Kortney and JJ's parents--children who went home to heaven too soon.

Please also pray for my friend, Pam.

God bless us all-
Andrea

Sunday, February 4, 2007 3:32 PM CST

This afternoon Matthew called to me, "Mom come here...I have
something really important to show you!" So I went to the hallway and saw he was sitting at the top of the steps. When Matthew saw me he got up and started walking down the stairs. He started walking so quickly I was scared. I wanted to reach out and grab him, but I didn't.

Wow...it is so great to see him improving! My neighbor told me her son said he saw Matthew walking in the hallway at school (pushing his wheelchair, but nonetheless..walking!) What an inspiration Matthew must be to his classmates (at least I hope he is!)

This weekend is an emotional one for me--- today would have been my mom's 67th birthday. It's hard to believe this is her 8th "birthday" in heaven. I don't think there's a day that goes by that I don't think of her and miss her. Just this week Jack and I were talking about how much we miss my mom. My mom was such a positive force in our lives---so bubbly...full of goodness and love.

Tomorrow marks the 6 year anniversary of Matthew's first brain surgery. I will paste below some of my thoughts from back then--in case you feel like reading:

++++++++++++++++++++++++++++++++++++++++++++++

2/5/2001
Dr. Avellino called a few days after our meeting and said that we should schedule surgery as soon as possible. He felt waiting would be too dangerous. So, surgery was scheduled for February 5, 2001.
He told us to anticipate a week long hospital stay.
Next thing we had to do was figure out where to stay for the week. Both The Children's House and Ronald McDonald House were booked. So, we had to resort to renting an apartment for a week. Thanks to the Garden State Horror Writers' Association (a writer's group my husband belongs to), the $1,000 rental fee was a little more affordable. We
arranged for my dad to be with us for the week, mainly to look after Luke while Jack and I were at the hospital with Matthew.
The night before the surgery we loaded the car with our essentials for the week. It was cold and dark on our drive down; it seemed darker than usual.
We had a little trouble finding the entrance to the building, but finally made it inside. The place was beautiful. The building was a warehouse that was renovated into apartments. Once we got settled into our apartment, we went to the local grocery store to pick up some snacks. Since Matthew was on steroids, his appetite had become
ferocious. I felt like all I did the past few weeks (when not tending to Emma) was feed Matthew! One morning he woke me up at 5:00AM requesting potato chips! Of course I obliged and fetched him some chips that he ate in my bed. When you have a child with a life-threatening illness, the rules change.

Matthew sat in the grocery cart and picked out snacks he wanted to eat. He was not allowed any food after midnight, but he was going to eat to his heart's content until then. Besides food, Matthew found dolphin bath appliqués—the things you put on the floor of your shower so you don't slip and fall. I knew he wanted them just because they
were dolphins. What was I going to do with bath appliqués? I didn't care, I bought them for him. I would have given Matthew anything. At that moment the intensity of what laid ahead tomorrow hit me over the head like a sledge hammer.

That night, Matthew slept between me and Jack in the one bed. Emma slept in her car seat next to our bed. I laid in bed and the thought that this could be my last night with Matthew flashed through my mind. I quickly pushed that thought out of my head. I was scared, though, and could only imagine how Matthew must be feeling. We awoke at 5:00AM to be at the hospital by 6:00AM. When we left the apartment it was dark, cold, and rainy. We loaded a sleepy Matthew
into the car and traveled the ten minute ride to the hospital. When we got to the hospital we had to go down to the basement to get Matthew's pre-op MRI done. This MRI was extremely important as it would be used as a map of Matthew's brain, guiding Dr. Avellino during the surgery. Matthew was amazing during the MRI. I was allowed in the room with Matthew, however, I first had to take off
anything metal. No watches, belts, credit cards, keys are allowed in the room with the MRI machine, or else you could find yourself stuck on the machine! They laid Matthew on the table, strapped down his head and slid him into the machine. I stretched my arm as far as I could, and placed my hand on Matthew's leg. There was a small mirror above Matthew's head so he could see me. I'm not sure how much of me he could see in that tiny mirror, but at least he knew I was there.
For the next 45 minutes, while the machine made all of its loud clunks, whirs, and beeps, I prayed. While praying I noticed a red laser looking thing on Matthew's head in the shape of the cross. I knew that it was most likely on all patients who received an MRI, but it gave me great comfort to see a cross on Matthew.

After the MRI, Matthew was wheeled up to the pre-op waiting area. There were a few other children in the waiting room, but I thought I'm sure there aren't any other children here having brain surgery. Matthew sat in his wheelchair, watching television. Eventually we saw Dr. Avellino. He told Jack and me that we looked nervous. I felt like saying, "Of course we're nervous!" Around 8:00AM it was time to take Matthew to the operating room. They allowed one parent to go back with the child, so that was me.

Matthew and I waited in a room just aside the operating room for a few minutes. I put on a gown and surgical hat and tried to joke around with Matthew about how silly I looked. I then sat with Matthew and looked into his eyes—I mean really looked. His beautiful hazel eyes with flecks of gold. At that moment I felt as though I could see his soul. It was also then that I realized this could be the last moment I spent with Matthew. He could die on the operating table, or come out in a coma or vegetative state. Matthew might
never be the same.

A few moments later they escorted us into the operating room
where Matthew would be having his surgery. They put Matthew on the table and I could only imagine how he must be feeling. The resident tried putting the gas mask on Matthew's face, but Matthew started to panic. The anesthesiologist told the resident there was no reason to
do that, for it was just upsetting Matthew. She took the mask and just laid it on Matthew's chest, as close to his face as possible without causing him to cry. Matthew started to drift off, and that is when they placed the mask over his nose and mouth. The anesthesiologist then told me to give Matthew the biggest kiss ever. I kissed Matthew and told him I loved him. I walked out of the operating room, crying my heart out, praying for God to watch over my child.

Luke was back at the apartment with my dad and sisters. Emma, on the other hand, was with Jack and me. Against the advice of many people, including nurses, I decided to nurse Emma. I nursed Matthew and Luke and decided, as hard as it might be, I was not going to cheat my daughter—or myself—out of that experience. I knew that nursing not only was physically advantageous for my child (making her healthier
and smarter), but that it would create a strong bond between us. Therefore, Emma had to stay near me at all times. And since she was only two weeks old, she was eating quite frequently.

The waiting room at Johns Hopkins did not allow children under the age of 16. I can understand that people would not want a bunch of kids running around in the waiting room, however, what are people with other children (or babies) supposed to do? Well, we soon found out. The only place Jack and I could wait with Emma was on some benches by the elevators. The OR nurse told us that she would
physically come out to give us updates during the surgery.
My child was having brain surgery and I had to sit on benches in a hallway! What made it even worse was this annoying, six year-old kid who kept rapping all day. I had no idea where his parents were.

Since we knew it was going to be awhile before they actually began surgery, Jack and I decided to go down to the cafeteria to get something to eat and drink. We were sitting at a table and Jack looked at me with tears in his eyes and said he couldn't believe this was happening to our child. I couldn't either, but I had a good feeling about the surgery. I felt like everything was going to be ok. Even though we had a lot of time before the surgery, we wanted to get up to the floor quickly. We wanted to be as close to Matthew
as possible.

Finally, at 11:30AM, the nurse came out to tell us they just made the incision. I spent most of my time praying and reading the Bible. A friend had given me a bunch of crossword puzzles and magazines to read, but with my child having such a serious surgery I could not spend my time doing what seemed so frivolous to me. In the Bible, I
read a lot of the stories about Jesus healing people.
The nurse came out around 2:30 to tell us all was going well
and that Dr. Avellino was now using a vacuum to suck out the soft tumor. It was then that I looked out the window and noticed it was snowing. And it wasn't just ordinary snowflakes, but the snowflakes were so huge it looked like snowballs falling from the sky. I have never seen snowflakes so big. I thought to myself, "It's a sign!" For me, the big snowflakes falling from the sky represented Matthew's
tumor being sucked out of his brain.

We did not see the nurse again until about 5:00PM. She told
us that they were finished and closing up Matthew. I was relieved Matthew made it through the surgery and anxious to talk to Dr. Avellino.

Dr. Avellino came to talk to us around 6:00PM. He told us
that Matthew did great. He said he got out as much of the tumor as he could without causing any deficits to Matthew. He told us at one point when he was scraping at the tumor, the monitor indicating Matthew's hearing went off so he stopped. Another time, Matthew's heart rate increased so he stopped. Dr. Avellino got out as much tumor without causing any harm to Matthew. He told us he thought he got out around 80% of the tumor, but wouldn't know for certain until
the post-op MRI. Oh my God! He got out that much of Matthew's tumor?? It's a miracle! The best news was that preliminary pathology showed Matthew's tumor to be low grade, however, we wouldn't know for sure for a few days. Dr. Avellino went on to tell me that, in some cases, Matthew's type of tumor had been known to shrivel up and go away on their own after surgery.

I then knew what my prayer should be.

+++++++++++++++++++++++++++++++++++++++++++++++

Well, Matthew's tumor hasn't shriveld up yet, but I haven't given up hoping for that day.

I can't tell you how much we appreciate all of you helping us along on this journey for the past 6 years.

God bless,
Andrea

Monday, January 29, 2007 6:39 PM CST

It isn't until something is taken away that you realize how much we take for granted. Getting out of bed, brushing our teeth, putting on a glove.

Last year, despite Matthew's limited mobility, he wanted to go out and play in the snow. Being excited that he wanted to do that, I helped him get on all of his snow gear—hat, coat, scarf, boots, gloves. Gloves. I must have spent 15 minutes (although it felt like hours) trying to get Matthew's right glove on his hand—his weak hand. Matthew persisted and finally, after who knows how long, got his glove on. Matthew spent 30 minutes getting that glove on to walk outside
and realize he couldn't play in the snow. The look of disappointment on his face tore my heart. He was outside for 1 minute when he asked me to help him back inside.

Last week, Matthew called me at work and asked where his gloves were. I told him if they weren't in the closet, then I didn't know. Since Matthew was asking for gloves, I figured I better go buy him a new pair. So, this weekend I went out and got Matthew a new pair of gloves, a part of me a little concerned about how we would get his right hand into the glove. As soon as I got home, Matthew asked to
try them on. He told me, "I'm going to see if I can get my right hand into the glove." In less than a minute he had his glove on his right hand and, as he told me "with all of my fingers in the right holes!" He was so happy and proud—as was I! Later last night Matthew put his glove on again, came over and sat on my lap and told me to feel each
finger.

I have been "basking" in the happiness of Matthew getting a glove on his hand. Something so simple…yet was the most difficult thing a year ago.

Next time you brush your teeth, get dressed, or even put on a glove, say a prayer of thanks to God for being able to do all of those "simple" things.

Keep praying!

Love,
Andrea

Friday, January 26, 2007 7:17 PM CST

Thursdays Luke has karate, so we usually go out for pizza. However, it's been about a month since we last went out. Last night we decided to go so, as usual, I helped Matthew out of the car. I usually prop him up against the car door while I lock the car--then I help him walk into the restaurant. Well last night, once he was out of the car he
just started walking by himself! He walked into the restaurant (a total of 10 feet) without any help and without holding onto anything. Once inside he continued to walk to the table (probably another 15 feet).

Then today I received a note from Matthew's OT at school stating the following:

"I wanted to let you know that he walked all the way from his classroom (Mrs. Flynn's) room all the way to my room 404 which is the last room near child study team office. He did great! He did not have to hold on at all! He seems to have a lot more endurance now too. He also used his right hand to place blocks to build a pyramid (wedgits). He did awesome!! It is so great to see the changes in him!"

I nearly cried when I read the OT's note and what a great feeling to see him walking all by himself! I keep dreaming of the day I look out my window and see him running around outside.

Your prayers are working!

Love,
Andrea

Wednesday, January 24, 2007 9:36 PM CST

This time of year always makes me reflect on the days of Matthew's diagnosis--I suppose even more so this year because of the family in SD whose daughter has a brain tumor. I received an e-mail from the father the other night and he said the latest MRI has revealed their daughter's tumor has grown 100ince December. Their current doctor
has given their 4 year old daughter 2 months.

The days following Matthew's diagnosis were like walking on egg shells. Being told your days with your child are numbered makes you want to soak in every second you spend with them. Each moment with Matthew I wanted to imbed in my memory.

There was nothing during that time that brought me the slightest comfort--well, the only thing that did comfort me was praying and trying to get closer to God. I think I spent most of my moments praying--talking to God--begging Him for a miracle. Everything else just brought me heartache. I remember sitting on the sofa one night--trying to watch tv and seeing Matthew's shoes on the floor. I ached inside seeing them, wondering what it would be like NOT to see
his things scattered about on the floor---NOT seeing him run to the kitchen to get a peppermint pattie (one of his favorite treats)---NOT finding his little Pokemon and toy figures in my coat pocket.

God blessed us with a miracle and how I wish every one would be given that same miracle. More time with their child. It pains me to know others are enduring that unbearable heartache.

Please pray for our SD friend, Grace and for Bailey--a beautiful 7 year old who just lost her battle to a brain tumor. If you get a moment, please visit her site at:
Bailey

Love,
Andrea

Friday, January 12, 2007 8:18 PM CST

Today we went to Hopkins for another draining. They drained 13 cc's
and stopped when Matthew started to taste something funny in the back
of his throat. Dr. Carson and Ann (Dr. Carson's assistant) were
pleased with Matthew's strength and to hear he's been improving this
past week. I shared with Dr. Carson our insurance woes and he said he
felt ok waiting to get an MRI until we get things straightened out
(which, hopefully, we will). We will go back for another draining the
end of March-prior to which we will get a CT scan.

Matthew has been improving the past week--walking more on his own
around the house--even chasing Luke and Emma! I was telling Dr.
Carson and Ann that Matthew was chasing them, but would occasionally
put his hand on the wall--Matthew then chimed in that he did that so
he could stop!

Yesterday was our 6 year "anniversary." A day which brings much
reflection and emotions. Tonight a mother whose 4 year old daughter
has a brainstem tumor called me. She told me she read about Matthew
on the internet and it has been one of the only things that has given
her hope. Talking to her has made me even more emotional--hearing the
fear and worry in her voice--remembering all of those emotions I felt.

If our suffering and trials helps others--than that is what matters.

Below are some of my thoughts from 6 years ago....

+++++++++++++++++++++++++++++++++++++++++++
January 11, 2001

When you get up in the morning, you have no idea what the day has in
store for you. You go about your routines, anticipating the day to be
like every other day. You shower, eat breakfast, take the kids to
school, go to work, make dinner, and go to bed. Of course there are
special occasions or variations in your day—lunch with a friend, a
birthday party. However, you never expect your world to be turned
upside down.
For us, January 11, 2001 began like any other morning. I got out of
bed, ready to face another day of helping Matthew recuperate from his
foot surgery. Matthew had been home from the hospital for 10 days,
recovering from his second surgery on his club foot. Matthew was born
with a club foot which required surgery at the age of nine months, and
again at the age of seven. His leg was in a cast (green, for the
Philadelphia Eagles)-up to his knee. He was not allowed to put any
weight on his left foot; therefore, getting around was a challenge.
For the past week Matthew mostly laid on the sofa, watching
television. His main activity was getting to the bathroom. Matthew
scooted on his butt and we lifted him up onto the toilet seat. It was
exhausting, especially with me being pregnant and due in about 3 weeks!
Jack and I were concerned because since his foot surgery, Matthew was
unable to use his right hand. He could barely lift his arm off the
bed. I called Matthew's pediatrician and scheduled an appointment. I
was going to wait until Matthew was out of his cast (another 4-6
weeks), but decided we should not wait.
Around noon we got the boys ready to go out. On the way to the
doctor's office, I sat in the back seat with Matthew and Luke.
Matthew had become accustomed to me sitting next to him in the car. I
was his playmate before his brother arrived. I would spend afternoons
lying on the floor, playing pirate ship and medieval castle with
Matthew. Sometimes I would drift off to sleep, but Matthew would keep
on playing until I woke up! Being the seasoned mother of two (soon to
be three), I knew that any car trip over fifteen minutes required
snacks. I packed a bag of goldfish and gingerbread men. We were only
five minutes from home when Matthew asked for something to eat. I
handed him the bag of goldfish but he couldn't open the Ziploc bag. I
just didn't understand why he couldn't use his right hand. How could
he not have enough strength to open a bag? More than any physical
reason, Jack and I thought Matthew's weakness was psychological. My
mom died a year ago and losing her was hard on all of us. My mom
watched Matthew while I worked, so Matthew was quite attached to her.
We got to the doctor and told her Matthew was not using his right
hand or arm. Back in October, Matthew's teacher noticed he wasn't
using his right hand all of the time, so we took him to the doctor.
All Matthew's pediatrician did was ask him to squeeze her fingers.
She said he was fine and sent us home. I really didn't think anything
of it.
This time Matthew's pediatrician did more neurological tests than just
squeezing her fingers. After examining Matthew she told us we should
get a CAT scan done immediately. She also scheduled an appointment
with a local neurologist for the following day. I was stunned. A CAT
scan, why? What could be wrong? I'll never forget how scared I was
when she looked at me and said, "You should be very worried." A
doctor telling me I needed to worry?
I looked at Matthew, sitting in the chair….his sweet, innocent little
face and I began to cry. How could we have doubted him? To think I
thought this was just some psychosomatic symptom of my mom passing
away. Matthew asked his daddy why I was crying. Jack told him I was
concerned. I knew I had to be strong, for Matthew. But I just
couldn't help falling apart at that moment. I was scared and worried.
I now knew something was very wrong, but I still had no idea how bad
it was.
We made a pit stop at my dad's house before getting the CAT scan done
and dropped Luke off with my dad. Little did I know it was just the
beginning of "dropping off" our sweet, little Luke.
The CAT scan was a disaster. Matthew refused to lie on the table.
Even with the cast on his leg, he was able to get off the table and
crawl out the door. After 30 minutes of trying to get Matthew to lie
on the table, the technician told us we should have him sedated and
bring him back tomorrow. We made an appointment for the next day and
I called the pediatrician's office to tell them we would need them to
sedate Matthew for his CAT scan. The nurse told me to wait a moment.
She got back on the phone and told me the doctor wanted the test done
immediately, so we were to go to a local children's hospital, AI
DuPont Hospital (the same hospital where Matthew had his foot
surgery). We briefly stopped at my dad's before heading over to get
the CAT scan done. Jack told Matthew that if he cooperated,
afterwards we would stop at the mall and get a toy.
Since I was pregnant, Jack went back with Matthew for the CAT scan
and I waited. They were only gone for a few minutes so I knew Matthew
must have not put up a fuss. Jack said Matthew did a great job. It
wasn't too much longer before someone came out and got us. They moved
us to a private examination room and said Matthew's pediatrician would
be there soon. The pediatrician came in and told us the
unthinkable--our son had a brain stem tumor.
I put my head on Matthew's lap. All I wanted to do was hold him. How
could this be happening? The doctor told us--in front of
Matthew--that things did not look good. I was too much in shock to
think of having Matthew leave the room. I later thought how horrible
it was for Matthew to be in the room to hear that.
I got on the phone and called my dad. I couldn't even believe what
was happening. The doctor said Matthew was to be admitted immediately
and they would schedule an MRI for the next morning.
Around 6:00 my dad and sisters arrived at the hospital. Neither
Matthew nor Luke had eaten dinner so we bought some pretzels and ice
cream. Real nutritious dinner, but that didn't matter at the moment.
I was with my family but I never felt as alone as I did that evening.
I felt as though I was suffocating in a blanket of darkness.
I went outside to call a friend—someone who had helped me through my
mom's illness and death only a year ago. I asked her to start praying.
I went back inside and filled out the admissions paperwork. I wasn't
supposed to be doing this! We were supposed to be at the mall, buying
a toy for Matthew. After we got Matthew settled into his bed, Jack
and I went down to the cafeteria for a drink for Matthew. As we got
off the elevator and rounded the corner to the cafeteria, Jack started
to cry. He said it pained him to think that Matthew's baby brother or
sister may grow up not knowing him. I had thought the same thing
earlier but hearing those words only made it more real.
We went back upstairs where Matthew was faced with visits from various
doctors--the first one being the neurologist we had an appointment to
see the following day. She took us aside and spoke to us for awhile.
She told us it looked like Matthew had a tumor in his brain stem but
that we would have a better picture after seeing the MRI the next
morning. I think she could sense we were scared and she was trying to
calm us a little.
All of the doctors did the same thing. They asked Matthew to squeeze
their fingers with his right hand, raise his right arm in the air.
They questioned me and Jack about his health. Was Matthew a full-term
baby? "Yes." Was he nursed or bottle fed? "Nursed." Did he have
any allergies? "No." Jack and I told them that he seemed fine up
until his foot surgery. During the fall, Matthew's teacher told us he
wasn't using his right arm and hand all of the time in school. At
Matthew's physical in October I mentioned that to his pediatrician and
she told me he was fine. It wasn't until after the surgery that he
couldn't use his arm.
The hospital rules stated one parent was allowed to sleep in the room
with the child. Well, I told them that being 8 ½ months pregnant, I
wanted my husband to stay also. The nurses were accommodating and set
up a cot for both of us. Jack went home to pick up some overnight
essentials. While Jack was gone, Matthew had to go to the bathroom.
I wheeled Matthew down the hall in his wheelchair to the bathroom.
While we were in the bathroom Matthew asked me why he had a lump in
his head. "How do I answer this?" I thought. I told him I didn't
know but we were going to find out what we needed to do to get rid of
it. I put him back in bed and lay with him until he fell asleep.
It was about 11:00pm when Jack got back to the hospital. Jack and I
were both so exhausted but neither of us could sleep. I was so scared
and felt so alone. I kept thinking we just lost my mom a year ago-how
could we endure any more pain and suffering? It was around 2:00 am
when I heard Jack breathing heavily. He was asleep. No sooner had I
started to drift off to sleep when I suddenly felt a strange
sensation. My pants felt wet. I sat up in the cot, now I felt even
wetter. I couldn't believe it-my water had broken.

I hated to do it but I tapped Jack on the arm and told him I thought
my water just broke. He could hardly believe it. We called Matthew's
nurse for some help. She led me down the hall to a phone I could use
to call my obstetrician. With each step I took, more water ran down
my legs. My jeans were soaking wet. After I called my doctor, I
changed into some "scrubs" the nurse gave me. I called my sister,
Kara, to pick me up and take me to the hospital. I couldn't believe I
had to leave Jack and Matthew. I felt so guilty for leaving Jack
alone to have to deal with having Matthew's MRI the next morning.
And, of course, I felt horrible leaving my child. How could Matthew
ever understand why I wasn't there when he woke up in the morning? I
couldn't believe I was in labor-I still had over 2 weeks until my due
date. How could this be happening to us????
Kara got to the hospital around 3:00 am. She and Jack helped me down
to the car. As we drove off I looked at Jack, standing in the cold,
dark night all alone. It broke my heart.
Kara and I waited for what seemed like an eternity down in the lobby
of the hospital. My pants were soaking wet but the nurse had to come
down and make sure I was in labor. Once the nurse saw me she said she
didn't need to check me out, she could tell my water broke.
Kara and I finally got settled into a room by 5:00am. The pain from
being separated from Matthew was unbearable. There were moments I
just started to cry. I told my labor and delivery nurse about Matthew
and soon everyone was aware of my situation. I prayed and prayed that
the MRI would show that the CAT scan was wrong-that there was no mass.
I prayed for God to give us a miracle. I started to call people. I
needed people to start praying for Matthew. Where was God in all of
this? I looked at the door to my room and noticed that the window on
the door was in the shape of a cross. At that moment I knew God was
with us.
Around 9:30 am I started to push and at 9:48 am our third child was
born. We had a girl!!! Kara watched the birth and even cut the cord.
One problem: Jack and I had never decided on a middle name. But,
lying there, I knew what it should be. Faith.


+++++++++++++++++++++++++++++++++++++++++++

We can't tell you how much we appreciate all of your support over the
years--financially, emotionally, spiritually--everyone helping us in
their own, special way.

We love you all.

Andrea

Happy Birthday Emma!

Sunday, December 31, 2006 7:32 AM CST

Matthew was on the radio yesterday! One of Jack's web clients (my husband designs and maintains websites) sent Matthew money that he could spend on himself. We went shopping the day after Christmas and Matthew bought himself Nintendogs. It's basically a game where you buy, raise and train dogs. The woman who sent Matthew the money has written a dog book and has a dog (and cat) radio talk show. She thought the game was the coolest thing and asked if Matthew would talk on the air about his virtual dog game--and his real dog, Sadie. To hear Matthew, you can visit: Dog Talk Radioand click on the show from December 30.

We go to Hopkins again on January 12 for another draining. We were scheduled for a MRI on January 5, however, I have cancelled the appointment. I just found out on Friday that we owe $864 for our MRI in October! What happened to $50 co-pays?? The woman I spoke with at CHOP told me we should apply for medicare. So, I now have a list of things to do next week. Once we get that taken care of, I'm hoping to schedule an MRI at a more affordable cost. I am still in shock that we owe that much money. Of course yesterday we received a bill from Hopkins for $2400 that our insurance has not paid. It's no wonder I've had eye twitches for the past 24 hours :)

Tonight we are doing our usual New Years Eve thing--staying in with the kids and having my sisters over. Instead of dinner, we eat lots of appetizers--play games and watch movies.

For the past few years I've had a "slogan" each year-
In 2003 Matthew will be tumor-free
2004 will bring a cure
2005 (can't remember)
2006 Matthew's brain will be fixed

I'm still working on 2007.

I am praying 2007 will be a year filled with peace, health, and happiness. Thanks to everyone for all you've done for us this past year. 2006 was a tough year (with Matthew's radiation treatments and a few hospital stays), and we so appreciate everyone's support.

God bless-
Andrea

Sunday, December 24, 2006 8:14 AM CST

Amazingly, Matthew has been doing better getting around the house. The other night, when I came home from work, Matthew walked into the kitchen (by himself) and gave me a 2 armed hug....what a great gift!

Matthew performed in his band concert a few weeks ago. He played the cymbals and the sleigh bells. When the concert was over, his principal had someone wheel him to the front of the stage. It was great to see him doing something "normal."

We go back to Hopkins on January 5 to have more fluid drained...and another MRI soon.

We wish everyone a Christmas filled with love and peace. Praying 2007 is a New Year filled with good health and happiness.

Love,
Andrea

Tuesday, November 28, 2006 6:20 AM CST

We went to Hopkins today to have more fluid drained from Matthew's
cyst. Dr. Carson decided we should come more frequently (ie every
month) to have fluid drained. Dr. Carson drained 15 cc's--he stopped
at that as to avoid Matthew becoming too symptomatic (ie not eating).
We will go each month--with the hopes of stopping in a few months time.

As usual, it was a long day. We left here at noon and got home at
7pm. Dr. Carson thanked us for our fundraising efforts. He told us
they've already earmarked the money for some "exciting" brainstem
tumor research!

On the way home Matthew asked me if I knew the song with the lyrics I
travel the road alone. I wasn't sure what song he was talking about
but he then told me he's lucky because he'll never have to travel the
road alone because he has such good support. What an amazing boy!

Please pray for our friends the Kerpans. Kyle-an 11 year old boy with
the same type of tumor as Matthew-went to heaven today. His site is
www.caringbridge.org/pa/kyledkerpan

Love,
Andrea

Saturday, October 28, 2006 3:23 PM CDT

Matthew had a scheduled MRI at CHOP yesterday (FRI), but he had been getting worse in the past week or so, and we had called Hopkins about his weakness and (one day) dizziness. They said to wait for the MRI and they would look at that. But we thought his condition was worse than it had been, noticeably so, so Andrea called again with each new or aggravated symptom, just to be safe.

Andrea & Matthew were stuck at CHOP most of the day. The MRI was scheduled for 9:30 and they didn't get home until close to 4PM. Already a long day.
But not over. While at Hopkins, Andrea got word from Johns Hopkins that she could take Matthew there the same day (FRI) and they would drain his cyst via the reservoir and look at the scans.

The docs/techs at CHOP (Children's Hospital of PA) said that the good news was that Matthew's tumor has more dead spots in it than last time (back in June), but the bad news was that the fluid in the cyst had once again crossed hemispheres in the brain, blocking the ventricles and interrupting the free flow of brain fluid, which caused his brain (once again) to produce more fluid because it assumes there isn't enough; instead he has too much, it just can't circulate.

So Andrea took Matthew to Hopkins after 4PM, hitting rush hour in Newark, DE and in Baltimore. The 90- minute trip took nearly three hours then, of course, more waiting. The Intermediate Care (I'm assuming) area was full, so they were moved to a private room. The doc needed a CT scan because he said the MRI didn't show the placement of Matthew's reservoir.

They drained 30CCs (again) from the cyst via the reservoir at which point Matthew said his head was hurting. So they stopped there. The brain gets used to the pressure and if you relieve too much at once it can cause problems. If you'll recall, when they drained 30CCs of fluid back in June, the fluid was still coming out easily (meaning there was still a significant amount there) but they stopped as a precautionary measure, even though Matthew wasn't complaining of any discomfort. When he left the hospital in June, we knew that there was more fluid that needed to be drained. Matthew hasn't progressed physically from that point all that much and we assumed the remaining fluid was inhibiting him.

At this point, I don't know how much fluid is left, how much was there since June or how much new fluid accumulated since June, although it appears that some has since then based upon the past week or so.

By the time the fluid was drained it was after 11PM and Andrea was afraid to drive home (the hospital recommended that Matthew stay o/nite for observation anyway); Andrea was getting sleepy on the 3 hour drive to Baltimore, so she didn't trust herself to drive back after midnight.

Matthew said after the draining that he felt better already (although he wasn't too happy about the needle they gave him to draw blood); he told Andrea he felt like a brick was on top of him (not an exact quote) before the draining. I can believe it. He had more trouble walking to the car this past week and had a lot of trouble lifting his leg up into the car. I could tell he was struggling more than usual. Emma had been sick with a low grade fever, and Matthew seemed to catch a bit of this, so we thought it might be illness related, but clearly it was an accumulation of fluid in addition to the head cold/fever/virus/whatever.

We're hoping they will come home today. They should unless Matthew exhibits any problems post-draining.

I haven't received a report today yet. I'm sure Andrea will give a more detailed account of what happened when she gets back.

Thanks for your good thoughts and prayers!
-Jack


SAT AFTERNOON

I told Matthew last night that we need to stop these weekend getaways:)

I really don't have much else to report--Jack gave such a great,
detailed account. Matthew (I think) is much improved since his
draining. His fingers on his right hand--which have been cramped in a
tight ball for the past months, are now straight and relaxed. Today
Matthew stood by the bed by himself, and raised his right arm straight
in the air. Plus, his spirits are great. We went down to eat
breakfast in the cafeteria this morning and Matthew was even
laughing. Keep in mind I don't think Matthew has ever cracked a smile
in the hospital, let alone laugh. I even took a picture with my cell
phone to capture the moment.

Thursday evening was tough. Matthew was teary eyed and told me he
wished he could hear the Yu-Gi-Oh theme song. He told me he likes to
hear it when he's down as it inspires him. I wondered how Yu-Gi-Oh
could be inspiring--Matthew told me part of the lyrics:

"Tough times, hard climbs
We'll take them on together....
We'll win this fight"

I pray, pray, pray that this cyst stops filling with fluid and Matthew
can regain his strength and mobility.

Andrea

Friday, October 13, 2006 7:30 AM CDT

Link for Matthew's story on CBS3 News:


Matthew's News Story

http://cbs3.com/topstories/local_story_286062626.html

Matthew was fitted for his radiation mask on Thursday. We initially went on Tuesday, but had to leave because Matthew wanted no part of it. He was scared. Dr. Lustig (the radiation onc) gave us a perscription for Ativan to give Matthew before his appt. on Thursday.


On Thursday, after much coaxing-and eventually yelling-, Matthew took his pill. Thank goodness it worked and Matthew fully cooperated. They made me leave the room, but half way through the simulation they called me in because Matthew was getting agitated. To see Matthew in that mask is an image I will never forget. It was scary for me to see him like that...I can only imagine how he must have felt. There are holes in the mask (it is mesh), but they aren't very big. Matthew could barely open his eyes and couldn't talk--the mask was that tight. Matthew has beautiful dark, long eyelashes and I'll never forget how they were curling through the different holes in the mask.

Matthew was getting anxious because he said he couldn't breathe. Between myself and the nurses, we were able to keep him calm the entire 30 minutes. At one point he told me "I think the medicine is working." Matthew held my hand the entire time I was in the room with him.

I was so proud of Matthew.

We go back on 2/16 for a set-up and his first radiation treatment will most likely be the next day. Monday, 2/6, we have an appt with Dr. Carson. I have a feeling Matthew will be getting his cyst drained at that appt. as he hasn't been doing as well.

Yesterday (Friday) Matthew went to CHOP with me to visit some Internet friends, the "Thomas Team." Christi Thomas is a beautiful 8 year old girl from Ohio who was been battling neuroblastoma for 3 years. I have been following her story since she was first diagnosed and am so glad I finally got to meet her and her wonderful parents, Angela and Shayne. You can follow Christi's story at Christi Thomas Please keep her and her family in your prayers--they are in great need right now.

Tuesday, January 24, 2006 6:06 PM CST

Well, Matthew had his MRI today. Matthew was ok until I had to wheel him back to the room. Matthew dragged his feet and grabbed anything he could get hold of (doors, boxes) to stop me from taking him back. Ugh. Have you heard the expression kicking and screaming? That was Matthew today. It was ugly. I don't even want to go into the details. The nurses, however, were great. So patient and caring. They said that Matthew has been through so much, that his behavior was understandable.

Matthew's last words to me before he was "knocked out" were "I hate you.....you are ugly." Matthew's first words to me upon waking up were "I hate you." Once Matthew was asleep the anesthesiolgist came out to tell me Matthew didn't mean what he said. Of course I know that....to be the brunt of Matthew's anger/frustration/fear is the least I can do. It is still draining, however.

At dinner we were talking about the events of the day, and Matthew said he didn't remember saying that to me.

I pray Matthew will be able to handle the radiation without being put to sleep...I think it would be so much easier on him. I just hope he can handle the mask.

Well, Emma is crying for me. I'm still not sure of what's next, but I'll let you know.

Andrea

Tuesday, January 17, 2006 10:16 PM CST

Today Matthew had his pre-MRI appt. at CHOP. I didn't tell Matthew about the appt. until today. I don't know if that was right, but things went well. Matthew moaned slightly when I told him about the appt., but was very cooperative. Matthew did everything the NP asked him to do. Luckily, there were no needles--so that was a
definite good thing!

Last night we met with 2 MakeAWish volunteers. Matthew's wish is to go swimming with the dolphins. We plan on going after Matthew's finished with his radiation treatments. I hope having this trip to look forward to will help Matthew get through the next 2 months.

We saw Chronicles of Narnia yesterday--what a great movie! (At least I loved it). The movie just spoke to me--so much symbolism and great messages....forgiveness, sacrifice, good fighting (and overcoming) evil. It made me think of our battle against Matthew's tumor....reminding me we need to be strong and vigilant in our fight. God could (and I wish He would) easily heal Matthew on His own. However, I suppose sometimes WE must fight the fight--with God by our side. Anyway, the movie left me crying,uplifted, and renewed.

Recently I read a quote (and I wish I could remember where) about winter. To paraphrase, it said that during the winter, even though trees look dead, they are actually getting stronger--winter is necessary for trees to bloom in the spring. That saying has stuck with me the past week as I am thinking of Matthew's radiation--being
done during the winter--as something that will actually strengthen him...something that will help him "blossom" come spring. (I figure Matthew should be done with radiation before the beginning of spring).

In addition to praying for Matthew's healing, I ask that you please pray for strength for our family, peace for Matthew, and that we will find blessings along the journey that lies ahead.

What's next? --Matthew's MRI is Tuesday, 1/24.

God bless us all~
Andrea


*Emma had her 5th birthday party on Saturday. She invited 5 girlfriends and we had a fairy party. The girls listened to a book about fairies, danced like fairies to the Sugar Plum Fairy, pinned a horn on a unicorn, earned fairy wings and wands, ate sandwiches shaped liked hearts, flowers, stars, and moons. It was a fun party to plan and was just what I needed!

Wednesday, January 11, 2006 7:42 PM CST

It's hard to believe that it was 5 years ago that Matthew was diagnosed. 5 years ago today was the worst day of my life.

Jack and I have decided (I suppose) to go ahead with the radiation. We have a check-up visit on 1/17 and the MRI is 1/24. I know both visits will be hard for Matthew. I just dread each appt. as I know what a struggle it'll be with Matthew. Each appt is just so emotionally draining for me.

I called Matthew's PT today who basically told me we should go elsewhere. He suggested we go to a "hospital" where Matthew could also get counseling. I believe counseling is needed, especially with radiation treatments. More dr and hospital visits--all such a
drag! Matthew is such a private person, I really don't know how much counseling would help him. When we're in the hospital, he wants nothing to do with the child life specialist. Matthew just wants to be left alone...and I don't blame him. I'm really not one for confiding to a stranger. I don't know how anyone could help in this
situation unless they've walked in your shoes. I would really like to find a pastor/spiritual counselor to provide us with guidance, as Matthew's had some tough God questions.

A few years ago I started to write about our journey and just yesterday began to write again. If anything, I figure writing about it might be therapeutic. Below I will post what I've written about the day of Matthew's diagnosis. (Forgive any typo-s, it's a work-in-progress).



January 11, 2001

Around noon we got the boys ready to go out. I called Matthew's pediatrician a few days ago and scheduled an appointment. Since the surgery, Matthew had been unable to use his right arm. I was going to wait until Matthew was out of his cast (another 4-6 weeks), but decided I should not wait.

On the way to the dr., I sat in the back seat with Matthew and Luke. Matthew had become accustomed to me sitting next to him in the car. I was his playmate before his brother arrived. Matthew had a bag of goldfish and couldn't open the Ziploc bag. I just didn't understand why he couldn't use his right hand.

We got to the dr. and told her Matthew was not using his right hand or arm. She examined him and told us we should get a CAT scan done immediately and she scheduled an appointment with a local neurologist for the following day. I was stunned. A CAT scan. Why? What could be wrong? I'll never forget how scared I was when
she looked at me and said, "You should be very worried." A doctor telling me I needed to worry??? I still had no idea how bad this was going to be.

I looked at Matthew, sitting in the chair….his sweet innocent little face and I began to cry. How could we have doubted him? To think I thought this was just some psychosomatic symptom of my mom passing away. Matthew asked his daddy why I was crying. Jack told him I
was concerned. I knew I had to be strong, for Matthew. But I just couldn't help falling apart at that moment.

We made a pit stop at my dad's house before getting the CAT scan done and dropped Luke off with my dad.

The CAT scan was a disaster. Matthew refused to lie on the table. Even with has cast on his leg, he was able to get off the table and crawl out the door. After 30 minutes of trying to get Matthew to lie on the table, the technician told us we should have him sedated
and bring him back tomorrow. We made an appointment for the next day and I called the pediatrician's office to tell them we would need them to sedate Matthew for his CAT scan. The nurse told me to wait a moment and said the dr. wants the test done today, so she told us to go to a local children's hospital (the same hospital where Matthew had his foot surgery). We briefly stopped at my dad's
before heading over to get the CAT scan done. Jack told Matthew that if he cooperated, afterwards we would stop at the mall and he could get a toy.

Since I was pregnant, Jack went back with Matthew for the CAT scan and I waited. They were only gone for a few minutes so I knew Matthew must have not put up a fuss. Jack said Matthew did a great job. Not too much longer and someone came out and got us. They moved us to a private examination room and said Matthew's
pediatrician would be there soon. The pediatrician came in and told us the unthinkable-our son had a brain stem tumor.

I put my head on Matthew's lap. All I wanted to do was hold him. How could this be happening? The dr. told us-in front of Matthew-that things did not look good. I was too much in shock to think of having Matthew leave the room. I later thought how horrible it was for Matthew to be in the room to hear that.

I got on the phone and called my dad. I couldn't even believe what was happening. The dr. said Matthew was to be admitted immediately and they would schedule an MRI for the next morning.

Around 6:00 my dad and sisters arrived at the hospital. Neither Matthew nor Luke had eaten dinner so we bought some pretzels and ice cream. Real nutritious dinner, but that didn't matter at the moment. I was with my family but I never felt so alone as I did that evening. I felt as though I was suffocating in a blanket of darkness.

I went outside to call a friend—someone who had helped me through my mom's illness and death only a year ago. I asked her to start praying.

I went back inside and filled out the admissions paperwork. I wasn't supposed to be doing this! We were supposed to be at the mall, buying a toy for Matthew. After we got Matthew settled into his bed, Jack and I went down to the cafeteria for a drink for Matthew. As we got off the elevator and rounded the corner to the
cafeteria, Jack started to cry. He said it pained him to think that Matthew's baby brother or sister may grow up not knowing him. I had thought the same thing earlier but hearing those words only made it more real.

We went back upstairs where Matthew was faced with visits from various drs.-the first one being the neurologist we had an appointment to see the following day. She took us aside and spoke to us for awhile. She told us it looked like Matthew had a tumor in his brain stem but that we would have a better picture after seeing the MRI the next morning. I think she could sense we were scared
and she was trying to calm us a little.

All of the doctors did the same thing. They asked Matthew to squeeze their fingers with his right hand, raise his right arm in the air. They questioned me and Jack about his health. Jack and I told them that he seemed fine up until his foot surgery. During the fall, Matthew's teachers told us he wasn't using his right arm and
hand all of the time in school. At Matthew's physical in October I mentioned that to his pediatrician and she told me he was fine (she checked this by having Matthew squeeze her hands). It wasn't until after the surgery that he couldn't use his arm.

The hospital rules state one parent is allowed to sleep in the room with the child. Well, I told them that being 8 ½ months pregnant, I wanted my husband to stay also. The nurses were accommodating and set up a cot for both of us. Jack went home to pick up some overnight essentials. While Jack was gone, Matthew had to go to the bathroom. I wheeled Matthew down the hall in his wheelchair to
the bathroom. While we were in the bathroom Matthew asked me why he had a lump in his head. How do I answer this, I thought. I told him I didn't know but we were going to find out what we needed to do to get rid of it. I put him back in bed and lay with him until he fell asleep.

It was about 11:00pm when Jack got back to the hospital. Jack and I were both so exhausted but neither of us could sleep. I was so scared and felt so alone. I kept thinking we just lost my mom a year ago-how could we endure any more pain and suffering? It was around 2:00 am when I heard Jack breathing heavily-he was asleep.
No sooner had I started to drift off to sleep when I suddenly felt a strange sensation. My pants felt wet. I sat up in the cot, now I felt even wetter. I couldn't believe it-my water had broken.

I hated to do it but I tapped Jack on the arm and told him I thought my water just broke. He could hardly believe it. We called for Matthew's nurse for some help. She led me down the hall to a phone I could use to call my ob/gyn. With each step I took, more water ran down my legs. My jeans were now soaking wet. After I called
my doctor, I changed into some "scrubs" the nurse gave me. I called my sister, Kara, to pick me up and take me to the hospital. I couldn't believe I had to leave Jack and Matthew. I felt so guilty for leaving Jack alone to have to deal with having Matthew's MRI the next morning. And, of course, I felt horrible leaving my child.
How could Matthew ever understand why I wasn't there when he woke up in the morning? I couldn't believe I was in labor-I still had over 2 weeks until my due date. How could this be happening to me????

Kara got to the hospital around 3:00 am. She and Jack helped me down to the car. As we drove off I looked at Jack, standing in the cold, dark night all alone.




While this journey has been difficult, we have encountered many blessings along the way. We've made many special friends--families like us, facing their child being diagnosed with a life threatening illness. We've seen the generosity of family, friends, and acquaintances who have supported us emotionally, spiritually, and financially. Most of all, we have witnessed God at work. I have never felt closer to God than at the time of Matthew's diagnosis. It was amazing to see Him at work through others.

We are truly blessed to have had these 5 years with Matthew. I know this time has been a gift from God, for which I am very thankful. I wish Matthew was doing better right now...and that he didn't have to face more treatments, but I do know God will be with us....and I continue to believe in Matthew's complete healing. I don't understand why we must face this, but I do have faith.

Tomorrow is Emma's 5th birthday. I can truly say she has been a great source of joy and light throughout our darkest days. At only a day old, Emma Faith had a purpose in life. She was our angel--a true gift from God...not only to Jack and I, but to Matthew.

Thanks for listening, and for being there for us these past five years.

With love and gratitude,
Andrea

Tuesday, January 3, 2006 8:48 PM CST

I've been having chest pains all day--perhaps it was the stress of our visit with the radiation oncologist. I'll tell you, just walking into the radiation dept. is overwhelming...seeing all those people sitting there, waiting for their treatment. It is no wonder
Matthew tried to escape. First, Matthew tried wheeling himself away. He made it out of the room, but once we got in the hall, he stood up and walked away. I told Jack I am just so worn out fighting Matthew on everything. Every procedure--MRI, dr. visit, surgery--is a struggle. I went out into the hall to try to talk to Matthew, but he just gets so upset. He eventually came back into the waiting room.

We talked to the dr., briefly. We really didn't have any questions as they were answered back in July. Matthew refused to cooperate for a physical, and I didn't push the issue. The dr. did show us the mask Matthew would have to wear during radiation, and it isn't as scary as I thought it would be. It is more of a "mesh" material, so there are lots of holes to look out of. Matthew just sat in his
chair, coloring his Yu-Gi-Oh picture. As we were getting ready to leave, Jack noticed tears running down Matthew's face. He was still coloring, but crying--silently.

I still don't feel good about radiation...although the dr. did tell us it would be the "logical" thing to do. All I can think about are the risks with radiation--not the benefits. I'm not sure why that is. With surgery, there are risks--one being immediate death--although I've never dwelled on that. I know with surgery there are
risks, but I've always felt good and confident we were making the right decision. I don't feel that way with radiation. Shouldn't I feel this could kill the tumor? This has been the hardest decision I've ever had to make. I just wish I could fast forward to March and have this all be behind us. This truly is the hardest thing
I've had to face, and yet I realize it could be much worse.

On a good note, Matthew's walking has greatly improved. He can now get around, unassisted (yeah!). And, although he didn't walk down all of the stairs on Christmas Day, he did walk down one flight (to my bedroom) to wake me up :) On New Years Day he walked down both flights of stairs. He was so proud of himself...I loved the look on
his face. He did show off, however, and ended up hurting himself. He did a little kick after each step, and then fell on the last step.

Santa Claus called Christmas Eve and was a great treat. I think Emma was in "shock" and Matthew is so innocent. At the end of Matthew's conversation with Santa he said "Can I ask you a question?....is Rudolph real?" Santa told him Rudolph is real and he put him up to the phone. Santa then asked Matthew to sing Rudolph's favorite song, and Matthew sang "Rudolph the Red Nosed Reindeer." It was precious. Matthew told Luke later that night that he could hear Rudolph breathing into the phone. When Luke
talked to Santa he took the phone away from his ear, looked at the caller ID, and said to me. "it's not Santa, it's G. Phillips!" I then had to explain that Santa most likely had to borrow someone's phone. Only Luke!

We received a letter from Make A Wish today that Matthew has been approved to receive a wish. After Matthew's surgery in Oct., I contacted them. If we do go ahead with radiation, it'll be good to have that to look forward to at the end of Matthew's treatments.

I keep praying for God's guidance. I told Jack today perhaps the answer to Matthew's healing is radiation...and that's why is cyst is acting up. I just wish God would heal Matthew via divine intervention!

Well, we're off to get some pizza for dinner. If I am having heart problems, I'm sure that'll be good for me!

Please, please pray we make the right decision. I can't believe how overwhelmed and burdened this makes me feel.

Wishing you all a New Year filled with love, happiness, and-most of all-good health!

Andrea

Friday, December 23, 2005 10:08 PM CST

Just a little recap of our past few days. Monday was a very stressful day. We drive an hour and a half to Hopkins, all the way hearing Matthew complain about how hungry he is (he couldn't eat due to anesthesia for the MRI). We get to Hopkins at our appt. time--
11:00. At noon, the MRI tech informs us that, because we
were "late", we'd have to reschedule the MRI. (He told us that 11:00 is the time we are to be in the scanner and anesthesia wanted us there earlier for the prep work). Ok...the prep work consists of asking us if Matthew has had anything to eat or drink. I told the tech we were scheduled for surgery the next day....how are we
supposed to reschedule? He looks at me and shrugs. I then run out of the room, crying. At that moment, I just wished some crazed lunatic would have come along and shot me--that was truly how I felt--I just wanted to be dead. It didn't help matters that all the while Matthew is crying, trying to "escape" from the MRI dept. We
get ahold of Dr. Carson's assistant who tells us Dr. Carson could work with a CT scan without contrast. So, we did the CT scan. We left the house at 9:00 AM and returned at 6:00 PM.

Matthew was amazingly cooperative leaving the house Tues AM. We had Dr. Carson perscribe a valium for Matthew---which he took without any fuss. I think Matthew thought it was neat that one pill cost $9.00! We arrived at Hopkins at 6 AM. Matthew was ok until it was time to go to the OR. I now know how they got the expression "dragging your feet." As I wheeled Matthew down the hall, he dragged his feet...trying to stop the wheelchair. When we got to the OR Matthew refused to go inside. The anestheiologist told Matthew either he had to cooperate or she'd give him a shot. Well, after 5-10 minutes of trying to convince Matthew to cooperate,
she wrestled Matthew's weak arm out of his shirt and gave him a shot. That was horrible. I know it had to be done, but to see someone use Matthew's weakness to overcome him was hard. Within 5 minutes Matthew was out of it. His eyes were open, but he couldn't move or talk. They put him on the OR table and he looked so scared. The kiss is always so hard.

Fast forward to the PICU. Matthew's "roommate" in the PICU was a baby who was there back in October. I'm not sure what's wrong with the baby, but he has been there a LONG time. A pastor from the hospital was visiting the baby and on his way out, he said hello to us. He then asked if he could pray over Matthew, and we of course
said yes. The pastor took Jack's hand and put his other hand on Matthew's leg. (At the time, Matthew was watching tv). The pastor said Matthew could just continue to watch tv, so we did not make an issue of him joining hands. As the pastor started to pray, I saw Matthew stretch out his arm to hold the pastor's hand. It is an image that will always be etched in my memory. I know Matthew has
been upset with God lately--and confused--so it made me feel so good to see him reach out. That moment was a blessing.

Our most sincere thanks to everyone for the cards, gifts, and prayers. Please keep saying those prayers.

Wishing everyone a Christmas filled with many blessings.

Love,
Andrea and family

Wednesday, December 21, 2005 6:46 PM CST

After about 3.5 hours sleep, it was a l-o-n-g day by all accounts, but Matthew's surgery went well. We arrived shortly after 6am. They began to prep him before 8am. (Despite the anti-anxiety pill (yes, they only
prescribed ONE) we gave Matthew before the car trip, he still fought a little prior to being wheeled into the operating room. He fooled us a bit,
looking mellow and relaxed until the time came for surgery. The OR nurse ended up giving him a needle in his weak arm and Andrea said within five minutes he was 'out of it.')

They began surgery at 9:25am. Dr Carson came out at 10:26am and told us the results. They successfully repositioned the reservoir and released 20CCs
of fluid, which came out under pressure! They had guesstimated before that he had had 5CCs of which they had released 1.5 to 2CCs. So hearing that 20CCs had built up in Matthew's brain really helps explain the problems he's
been having. Dr Carson believes the reservoir is in a good position now for the future release of cystic fluid. He thinks Matthew has aged enough in
these past 4 years where radiation no longer has as many risks/side-effects as it would have had we started back in 2001.

Matthew had to have staples placed high on his forehead to seal a cut caused by a "pin" that they use for positioning the head for wand-based surgery --
think 3D grid modeling using the fiducials placed around his scalp. He has a bandage in the back of his head but nothing like the "turban" he's had for his craniotomies. He woke up fast, wasn't as grumpy as after past operations and part of that may be because he only has an IV in him, no other tubes, needles, etc. He watched the first Pokemon movie and ate 3 cups of ice chips.

Andrea planned to sleep o/night in a room the hospital reserves for parents with children staying in PICU, so I drove back to NJ to be with Luke and Emma. By the time I arrived home the phone was ringing and Andrea told
me a room finally opened up, getting Matthew out of PICU and into a private room. So she'll have much more comfortable accommodations tonight.

Matthew is scheduled for a morning CT scan. Assuming that looks good and he is as alert and well as he was post-op, then he should be coming home tomorrow, well in advance of Christmas. With all that pressure relieved
from his brain, I'm hoping he will regain the ability to walk on his own, and to come down the stairs unassisted, so he can give Andrea the gift she's been praying for: to see him come down the stairs on his own to open his
presents Christmas morning.

Thanks for your prayers, good thoughts, positive vibes, etc. We appreciate your support! I sure hope this is it for surgeries for Matthew.

-Jack


We just got home about an hour ago. A few minutes ago Matthew was on the sofa and called for me. I went to him and he asked me to help him up because he wanted to go to the other room. I was helping him walk to the dining room and I asked him what he wanted in there....he
replied, "nothing, I just want to walk around." He then told me to let go. He took many steps without me holding onto him.

Praise God! I just pray he gets better and stronger and that the fluid stops being produced.

Will write more later.

Thanks for all of your prayers--they work!

Love,
Andrea

Thursday, December 15, 2005 8:46 PM CST

I want to thank everyone for their kind notes of encouragement the past few days.

I think I've lost my motherly nuturing gene as I just can't take much anymore. When I'm at home, it seems all Matthew does is whine and cry. I feel guilty for being short and upset, but I feel at my wits end. I'm just not much of a mother for Matthew. I also tend to then take things out on Luke and Emma (and, Jack).

We found out today that Matthew needs bloodwork and a physical. Ok....when are we doing this? Saturday? Sunday? He just had all of that done 6 weeks ago! When I mentioned this to the dr. office, she told me anesthesia doesn't put anyone under unless they've had a
physical and bloodwork done within 30 days. Ok....what about emergencies???? I just don't feel like going. I've had it. I'm done. I feel like life will never be normal again, no matter how hard I try.

When I told the principal yesterday that I'd need some time off, he told me I should go talk to the PE teacher. I immediately gave her a call and found out her son had a brainstem tumor, too. He had surgery, radiation and 1 year of chemo. He was 8 when he was diagnosed....today he is 22!

Each day the principal has a "message" over the morning
announcements, here is his message from yesterday that really spoke to me:

"Someone wise once said: Every problem is an opportunity in disguise. When we are dealing with a problem, it's very hard to see the opportunity behind it, but it's there if you look. When we look for the opportunity (instead of the problem), surprising things can happen. Do you know how a natural pearl is created? It all begins
when an irritating grain of sand winds up inside the shell of the oyster, and from this irritation a beautiful pearl is created. The Japanese say it this way: Difficulties make you a jewel."

Today was a tough day.....yesterday was good.

Andrea

Wednesday, December 14, 2005 9:14 PM CST

We are scheduled for an MRI Monday, surgery on Tuesday, hope to be home by Wednesday.

Matthew does not want to have another surgery. I have no idea how we'll get him to the hospital those 2 days. Last time was so, so hard.

I can see Matthew getting weaker. Playing video games he doesn't even hold the controller with his right hand....his arm just sets behind his back. Going the stairs is tough for him, too. Tonight he stopped halfway up and just started sobbing. He asked me why God helps other people but not him. Wow. How do you answer that one? I just told Matthew I didn't know, but I ask God every day to help him and we need to keep on asking Him.

Good night~
Andrea

Thursday, December 8, 2005 3:10 PM CST

Well, we just got home from Hopkins. The CT scan showed Matthew's cyst refilled, so...after an hour of coaxing Matthew, he agreed to have it drained today.

Matthew's fear of needles is horrible. I am grateful for Dr. Carson's and Ann's patience.

They were only able to drain half of the fluid. They believe there is a membrane causing blockage so......Matthew will have to have another surgery to reposition the reservoir! Dr. Carson said this surgery should only require a one day hospital stay. The surgery will require a MRI with fiducials and has the same risks as his other brain surgeries.

Dr. Carson is concerned with how quickly Matthew's cyst refilled, so he told me we should start radiation or a chemo to try to control things. Dr. Carson told me the fluid in the cyst is tumor cells.

So...after Matthew's next surgery I guess we'll have to start radiation. UGH! I can't even think about that right now. I want....I need....normalcy. I was hoping to find a job this winter as we can't survive much longer without either of us working a full-time job. I know I just have to believe God will take care of us, just as He has these past 5 years.

In addition to Matthew's healing, please pray that I can provide my family with a loving, peaceful home. I was so stressed last night, I scared myself.

Andrea

Wednesday, December 7, 2005 8:13 PM CST

Matthew is scheduled for a CT scan at 7:50 AM on Thursday, 12/8 at Hopkins. We will see Dr. Carson at 9:30 AM.

Please continue those prayers for Matthew, and for me and Jack. Matthew is becoming so dependent on me (us) to get around and it can take its toll. Matthew is constantly calling for me when I am home. To say the least, I feel so inadequate to be Matthew's mom. This has been such a hard year and I'm really not sure how much more I can take at this point. Life is dragging me down.

In school last week, one of my students was taking a survey for the school paper and asked me what I want for Christmas. What I *really* want is to see Matthew run down the steps with Luke and Emma....tear open his gifts with both hands.....run around outside and play with his ultimate light saber with Luke. I can't remember
the last time Matthew ran around and played. Of course, I just told her "good health."

Thursday, December 1, 2005 3:32 PM CST

Well, Matthew is scheduled for a CT scan on 12/12. Matthew seems to be doing worse than when he first got home--he's falling, needs help getting around, his arm seems weaker than before his surgery, has had
a few headaches, and his eye does not seem quite right.

At first, I just wanted to ignore these signs...hoping it would just go away. I just wish I could close my eyes...open them...and all would be "right."

I talked to Dr. Carson's assistant, and she said we should schedule a CT scan to see if the cyst has refilled with fluid.

I told Jack the other night I felt like George Bailey from "It's a (not so) Wonderful Life,".....standing on the bridge...just hoping life could be good and pain-free.

I think I'm resigned to the fact that life is not about being happy, but about doing good while you're here.


Andrea

Monday, November 7, 2005 6:43 PM CST

Matthew had his sutures removed today. His incision looks great and tomorrow we can wash his hair!!!

Matthew's walking is just great. Of course, he still has issues--he can't dorsiflex his right foot, he tires easily, stumbles alittle---but he still looks good. So much better than after his surgery in June. Tonight Luke called me to come to the steps--he told me Matthew wanted me to watch him walk down the steps. Matthew waited until I was there to come down the steps--he looked great--and was so proud of himself (as was I!)

Matthew told me he wants to go to school tomorrow (and not just to visit)! We will start with half days til he builds up some stamina. I hope going back to school is an easy adjustment for him.

We saw Dr. Carson today after Matthew had his sutures removed. I told Dr. Carson Matthew is doing really well. Dr. Carson praised God for Matthew's recovery and told me he is so happy with the amount of tumor removed during Matthew's last surgery. He went on to say that he has seen, in a few cases, when enough tumor is removed the rest dies off. I told him that has been my prayer for the past 4 1/2 years--he told me to keep saying that prayer.

In unrelated health news, I have a temporary job!! I will be teaching 7th grade reading for 6 weeks (until Christmas). I never imagined myself teaching 7th grade, so I hope all goes well. I'm just happy to finally be getting some experience. I have been praying for months about a job, so I hope this is where God wants me right now. Matthew told me the other week I probably didn't get a job sooner because God knew I'd be needed during his surgery.

I told Dr. Carson today that I felt at peace after this last surgery. I didn't feel that way in June---I thought because of the decision we had to make regarding radiation. Perhaps that was the case, but I tend to think it might have been more than that--I just felt uneasy and worried. I now have some peace and am hoping it is a sign of good things to come.

Keep praying for Matthew's miracle. I keep dreaming of the day I hear "Matthew's tumor is gone!"

I believe.

Love,
Andrea

Tuesday, November 1, 2005 6:08 PM CST

Well, here we are...one week post surgery. I told Matthew at dinner tonight--as he was eating some grilled chicken--that one week ago at that same time he was sucking on a sponge of water.

Matthew seemed more content to stay at home today--he rode with me on some errands this afternoon, but other than that--he stayed at home. He had a very busy day yesterday. I am exhausted--more so than I was last week--so I can imagine how drained Matthew must feel. I think he's also a little scared to do anything until his sutures are removed. He told me the other day he doesn't want to take any chances of his incision leaking.

During Matthew's surgery last week, while sitting in the waiting room, I did a lot of praying and reading of the Bible and The Purpose Driven Life. One of the chapters I read in Purpose Driven Life was about us having a mission in life. It was at that point I prayed that, during Matthew's surgery, the Lord would take Matthew...comfort him and show him his purpose in life. I truly believe life is about serving the Lord and helping others.

During his surgery, I also thought about all of the blessings that have come into our lives since Matthew's diagnosis. Like I said earlier, Matthew's tumor has been a terrible cross to bear...but, we have encountered many blessings because of it and here are some I'd like to share:

-Dr. Carson and his medical team
-our family raising money for research and creating awareness
-the many, many friends I've made via the internet and their beautiful children
-Sara
-Denise
-the support and love of family and friends
-the kindness of strangers
-to witness the power of prayer and see God at work through others
-renewal of my faith

Thank you, God, for these blessings.

Love,
Andrea

Monday, October 31, 2005 7:12 PM CST

Matthew had a busy day today. Matthew decided he wanted to visit his reading class, so we went into school around 9:30AM and visited some of his classmates and favorite teachers. We stayed for about a half hour, ran some errands and then came home for a rest. Well, we were home for 15 minutes when Matthew was complaining he wanted to go somewhere! We went back to school around 1:00 to visit his science class. Matthew even wanted to take in candy for his teachers.

Matthew's school was nice enough to lend us a wheelchair for trick-or-treating. Some people asked Matthew why he was in a wheelchair....I told Jack it was so surreal to hear Matthew say he had brain surgery. While out trick-or-treating, some adult said to Matthew we should have a bell on the wheelchair. After that comment Matthew wanted to go home. I'm not sure if it was the insensitive comment or just the fact that he couldn't run up to the door with Luke and Emma...perhaps a combination of both. So, we took Matthew home and Luke, Emma, and I hit some more houses (of course, getting candy for Matthew as well).

Matthew is now at Applebee's with my sisters. It's hard to believe we were eating dinner there just a week ago with surgery looming the next day.

Matthew received some money the other day ($20). He told me today he'd like to use $9 to buy a video game, $4 for Yu-Gi-Oh cards, $1 for Emma, $1 for Luke and the other $5 he told me he'd like to give to the hospital. He has such a good heart. Our journey has not given us happiness, but it certainly has given my family the vision to know there is more to life than our happiness.

Well, Emma is waiting for me to start her bath.

I am so glad Matthew was home to enjoy Halloween. It was a good day.

Love,
Andrea

Sunday, October 30, 2005 6:16 PM CST

After getting home yesterday Matthew told me that at home, time goes by faster than in the hospital. He then said that's because you're with your family. It's amazing how his spirits lift as soon as we're home.

Matthew is already getting around on his own! He also told me he thinks his right fingers are stronger.

Matthew has a friend over right now--it's great to see him resume some normalcy.

Matthew told me today that he'd like to visit his reading class tomorrow. I was so excited when he told me this! We'll see how he feels in the morning.

In the mail yesterday I received a newsletter from the ABTA and the article on the front is "Eating to Fight Your Tumor." A message? Luckily, some of Matthew's favorite foods are some of the best (ie broccoli, fish, tuna, tea, oranges, spinach). What we have to work on with all of our kids is eliminating white food (white bread and
rice). Matthew told me today he heard about a wheat bread that looks white...not sure if that exists, but I'll certainly look for it.

The tips in the article were:
-eliminate white food (eat wheat bread, brown, long grain
rice...replace sugar with molasses to sweeten food)
-eat colorful fruit and veggies
-eat foods with phytochemicals (NOT vitamin supplements); these foods include: onions, garlic, carrots, tea, citrus fruits, broccoli, soybeans, berries, apples, whole grains, grapes, beans, cherries, rosemary)
-drink LOTS of water
-eat healthy fat (flaxseed, fish, canola oil)
-follow the 80/20 rule (allow yourself to make unhealthy choices 20% of the time)

So, in addition to prayer, I am going to try to help Matthew eat healthy foods. I made whole wheat pasta tonight that had flaxseed and Matthew ate some!

I am continuing my prayer for Matthew's COMPLETE healing. Perhaps it'll come at his next MRI--just in time for Christmas.

Please pray for Matthew's quick recovery and healing.

Love,
Andrea

Saturday, October 29, 2005 3:08 PM CDT

WE'RE HOME! Thank the Lord! Matthew is just so miserable in the hospital, it is just good to be home. Yesterday Matthew was crying that his life is miserable. That's when it really hit me. How I wish Matthew could live a carefree childhood like most other children.

Below is a message Jack posted regarding Matthew's MRI:

++++++++++++++++++++++++++++++
Dr Carson told us after he looked at the post-op MRI that he believes he removed 75% of the enhancing remnant tumor. Enhancing means it lights up on the MRI (from the contrast dyes) and is the active/alive part of the tumor. When he decompressed the cysts, he said the tumor dropped down and he cut some off; more dropped down and he cut that off, then some more. He said it was like 'low hanging 'fruit'...the 25% that remains, he said, is the edges of the tumor, closest to good brain tissue. And it's important that he not damage this area because all the body's critical functions are located in the brain stem. He also said he believes they did what they set out to do
without causing Matthew any harm, i.e., damage to the brain.

Matthew is hallucinating, seeing people on his arm staring at him. Dr Carson thinks it's a side-effect of the steroids they have him on.

He had his IV taken out today (he's eating & drinking) because he can take his meds orally. I think that all the needles/hoses/etc have been removed now. He's grumpy but that's natural since he's in the hospital and hates it
there. He is getting around, with some help, but I don't think PT & TO have done any official rehab with him yet.

We really want Matthew to get home before Halloween. Even though he probably is not going to leave the house, I don't want him to feel he missed the holiday. Luke and Emma will take an extra bag to get him some candy.

I know Andrea will be glad to get home. She didn't get the best type of bed w/ Matthew's room. She has a padded chair that converts to a pseudo-bed, not the bed-built into the wall that some of the rooms have. She's been getting
bad back pains - sounds like spasms - and headaches.

So, with luck, Matthew will be coming home tomorrow. Dr Carson wants him to have an MRI in only 8 weeks from now. If he would have the same cyst-filling problem again, the cyst can now be drained (via the Omayar (sp?) reservoir)
with a needle, rather than full-blown brain surgery. Our hope is that enough of the remaining tumor was removed to destroy its viability. It would be great if the cysts didn't re-fill and the remainder of the tumor now
withered away.

Minimally, I hope that if the cyst problem recurs, that Matthew will be able to be treated out-patient (via the needle drainage) so that he doesn't need to go through this again.

++++++++++++++++++++++++++++++++++

In 2 weeks Matthew will have his sutures removed. In 8 weeks we will have another MRI. Dr. Carson said that if the next MRI shows growth, radiation may be a possibility. If it hasn't grown, we will just wait and see.

Dr. Carson said he's seen many cases of JPA's where, after a few debulkings, the tumor stays stable for 10 years. He also said he's seen radiation change JPA's to a more aggressive type.

Please, please pray that the remaining tumor shrivels and dies. I am still praying and believing in the day when I hear the words "Matthew's tumor is gone."


Well, Emma needs my attention and Matthew wants me to make some tea. Of course, Luke is in his room playing video games.

Please keep praying.

Love,
Andrea

Tuesday, October 25, 2005 10:46 PM CDT

We've been up for almost 24 hrs now. We woke up at 3:45AM, left the house at 4:45AM and arrived at Hopkins at 6:30AM. I was afraid Matthew would put up a fight getting in the car, but he was good. Luckily, he slept on the ride down.

As we approached the pre-op room, Matthew kept saying he didn't want surgery. Matthew was so scared and nervous....so many tears. Everyone was wonderful with Matthew and didn't push him to do anything. They allowed him to keep his clothes on to go to the OR and they allowed both Jack and I to go back with him. All the way to the OR, Matthew dragged his foot under the wheelchair and kept putting on
the brake!

Many people (nurses and drs), including Dr. Carson, came to talk to Matthew to settle him down. Matthew kept saying he didn't want surgery, he didn't care about himself, and he didn't care if he died. Dr. Carson told Matthew that Jack and I loved him, and he should do it for us. The one dr. told Matthew that if he took some Versed, they
would leave him alone in the room with just Jack and myself. Matthew actually agreed to this and he took the Versed. In a few minutes, Matthew was telling us he was seeing bugs....a sign that the Versed was working. Matthew then asked if he could lay down in the OR....so Jack and I wheeled him back. They put Matthew on the table and we stayed until he was asleep...giving him big kisses. As I left I told
Dr. Carson that many prayers were being said for him today.

The prep time took 3 hours....the incision being made around 11:15. At 2:40 they called to tell us they were closing. At 4:00 Matthew was out of the OR. Dr. Carson told us that he was able to decompress the entire cyst, using the new scope he just received yesterday. He installed the reservoir and was able to remove a chunk of tumor. He said the surgery couldn't have gone better. I was really hoping he
would tell us he removed ALL the tumor, but I have such a good feeling right now. Matthew should have his MRI tomorrow which will show how much of the tumor was removed.

Matthew is now in PICU and doing well. He's alert, talking,
drinking...even ate some soup. He's anxious to get all of his needles out, of course.

Jack and I are exhausted and are sleeping at a hotel for the night. Anyway, just wanted you to know that Matthew is doing well and, as Dr. Carson told Matthew, "the surgery was a huge success."

Thanks for the prayers....please don't stop!

Love,
Andrea

Monday, October 24, 2005 8:22 PM CDT

It was a long day, but not as long as tomorrow is going to be. I have lots to do, so I'll make it short.

Before leaving for Hopkins today, Matthew told me he wished he could just be normal. I told him he was so much better than normal, but told him I knew what he meant for I, too, want the needles, MRI's, and surgeries to be over.

Everything was going ok until it was time to draw blood. Matthew FREAKED out. Jack and I both ended up leaving the room....in tears. Matthew finally settled down and had his blood drawn.

Matthew had his MRI without any sedatives, anesthesia (I need to learn how to spell that word)...but the reason why is another story. The important thing is Matthew did a GREAT job with his MRI and the IV (even though it took the "best" tech 3 sticks to get it in). Ironically, Matthew's lack of fluid all day is not good for
finding veins! (The MRI finally happened at 2:30).

On the way home, Matthew kept crying that he doesn't want
surgery....why do we care about him...he doesn't care....he hates germs...he hates the devil....he's mad at God.....the list goes on and on. I feel like such a HUGE failure when it comes to dealing with that stuff. I tell him we love him and care about him and want him to be with us for a long time.

We went to Applebees for dinner and Matthew was telling the waitress about his upcoming surgery (plus the other 4 surgeries he's had already in his 12 years). Listening to Matthew talk to her just amazed me. Even though I sometimes wonder "why can't he just cooperate with some of these tests and accept things", I am so proud
of him.

Please pray that Matthew cooperates in the morning (4:30 AM is when we have to leave). I am wondering how we'll get him in the car! Also, please pray for our safe traveling as it'll be dark and raining. Pray for Emma and Luke to feel secure and loved. And PLEASE pray for Dr. Carson. He just got the new scope today, so
Matthew will be the first patient Dr. Carson uses it on. Dr. Carson told Jack it'll be much longer than Matthew's last surgery....A LOT of prep time. It is a very complex surgery and Dr. Carson told Jack to say lots of prayers.

I am exhausted and can really just concentrate on issues at hand....it is hard for me right now to pray the way I should...so please pray for me. I told Matthew this morning that lots of people are praying for him. He smiled and hugged me and said that God wants him well, too.

After 4 1/2 years of praying for Matthew's tumor to be gone, how I wish tomorrow would be the day.

God bless us all,
Andrea

Sunday, October 23, 2005 8:52 AM CDT

I still can't believe that today is our last day at home before surgery.

Tomorrow we have to leave around 7:30 AM to be at Hopkins by 9 AM for pre-op stuff. Matthew's MRI is scheduled for 12:00. We still aren't sure if we'll be sleeping in Baltimore or coming home. Personally, I'd love to come home to be with my family tomorrow night. If we do come home, we'll have to leave at 4:30 AM to be at Hopkins by 6 AM on Tuesday. I know it'll be hard to get Matthew to the hospital--I'm really not emotionally ready for that challenge. I am exhausted--mostly mentally and emotionally. On top of the worries of Matthew's brain surgery, Hopkins called this week asking us for our co-pay BEFORE surgery (if our co-pay was only $30 it wouldn't be a big deal, but it's not!)

Besides getting Matthew to the hospital, I'm also not sure how I'll get through the day on Tuesday. Sitting in that waiting room is brutal, but I don't like to leave as that's where they call to give you updates. When Matthew is in surgery I would prefer to be alone (with Jack)--praying and meditating...not surrounded by a bunch of people talking, reading magazines, etc. I told Jack last time that if we ever strike it big, we are going to build a new waiting room just for families of brain surgeries or serious illnesses--a room that has recliners and is peaceful!

Matthew has been enjoying the weekend with his best friend, David. David slept over Friday night and Matthew slept over his house last night. I know the next two nights will be tough for Matthew.

All I can think about right now is getting Matthew through the next two days. Right now-more than anything-I just feel so badly for Matthew.

Please continue to pray for us.

Love,
Andrea

Wednesday, October 19, 2005 9:55 PM CDT

We received a call around 6:30 PM tonight that Matthew's surgery is scheduled for Tuesday!!! Yes, only 6 days!!! My head is still spinning.

We will have to go down on Monday for Matthew's pre-op MRI. Last time we spent the night...this time I feel like being at home the night before surgery. I told Jack even if we have to leave our house at 4 AM Tuesday, I'd love to be able to sleep in our home Monday night. We will talk to Matthew and see how he feels.

I think we will leave Luke and Emma at home (with family)....with Jack returning home on Wed. We think it'll be best for Luke and Emma to continue their routine (even though I'll miss them to pieces!) I just hope Emma will be able to cope with me not at home (especially at bedtime).

I already told Matthew the news. He was shocked at how soon the surgery is, as were Jack and I.

It certainly is tough being a parent in this situation. Matthew spent the afternoon at his best friends house and when I went to pick him up tonight, he pleaded with me to spend the night. I insisted Matthew come home....that we don't have sleep overs on school nights...etc. Matthew then started crying about having surgery and said that the only reason he's having this surgery is for me. Well, that's when I lost it. We hugged and cried and I
said he could spend the night. I still can't believe I'm allowing my child to sleep over on a school night, but with his surgery looming only days away it seems so trivial.

It is a very complex surgery, with many risks. I am standing firm in my belief that Matthew WILL be TOTALLY healed and ask that you,too, please pray for Matthew's miracle. And please believe in what you pray for. This journey has shown me what faith really is.

In addition to Matthew's physical healing, please pray for
his "acceptance" of this surgery and that he finds peace. Also pray for Luke and Emma. It is hard to see how cancer affects the siblings in a family.

On a final note--Matthew shared with me this week that his one teacher was talking about playing the lottery, and she told the class that if she won, she'd be off to Las Vegas and all they'd see is a cloud of dust. Matthew told me that he told her if he won the lottery he'd give all the money to hospitals so they could help sick children. I pray one day he is able to help others in need.


God bless us all,
Andrea

Wednesday, October 19, 2005 9:29 PM CDT

SURGERY SCHEDULED FOR 10/25!

Just found out tonight Matthew is scheduled for surgery on Tuesday!!!!

Please pray for us.

Saturday, October 8, 2005 1:58 PM CDT

Well, despite the wind and rain (again), we had our walk! Over 100 people walked, including two special families--Angel Rachel's family and Angel Melody's mom and dad. Melody's mom and dad came from California to join us today, bringing with them over $5,000!!! It was so, so special for me to meet them as I followed Melody's journey from the beginning.

We raised over $8,000 today, bringing our total to over $16,000 for this year. We still have our e-bay auction which should bring in over another $1,000. Not close to our goal of $30,000 but I suppose not too bad.

Well, that's all for now.

Thanks to everyone for coming out in the rain!

Andrea

Friday, October 7, 2005 8:05 PM CDT

Dr. Carson called today. He told me Matthew's cyst has gotten even bigger in just a weeks time (between the CAT scan and the MRI)...so much so that is now extends into the right side of Matthew's brain.

Dr. Carson went on to say he feels this is a blessing as the tumor has attached itself to the cyst wall and the upper part of the tumor is being pulled down by the cyst. Dr. Carson feels that there is much hope he could remove all of Matthew's tumor because of this. I am crying as I type this as I can not even imagine the joy of being
able to tell Matthew his tumor is GONE!

The surgery, however, is VERY complex. Dr. Carson said he would need a special scope in order to perform this surgery (since the cyst is now on the left and right side)...however, the order for the scope has been placed and should be here within a few weeks.
Shirley Howard, President of the Children's Cancer Foundation, is buying the equipment for Dr. Carson.

Dr. Carson ended our conversation by saying he is very hopeful that this will have a good outcome. Dr. Carson is truly a man of God and I take what he says to heart. I know he would not tell me something just to make me feel better.

I know getting Matthew up to and through the surgery will be so hard. Please pray for peace for Matthew....and keep praying for his COMPLETE healing as well as Dr. Carson.

Love,
Andrea

Wednesday, October 5, 2005 7:04 PM CDT

WALK IS ON SATURDAY, OCT 8--LOGAN TWP., NJ

Matthew had his MRI yesterday and, as usual, it was a long and stressful day. We left the house around 11:00 AM and got home at 7:30 PM. Matthew freaked when they put the gas mask on his face. My last image of him awake was of him screaming, being held down by 3 nurses.

As soon as Matthew woke up he was crying, saying "I want to go home" over and over.

My sister, Jennifer, took the day off to drive us down to Baltimore--that way Jack could stay home with Luke and Emma. I am so lucky to have such great sisters.

We should find out the results of Matthew's MRI by the end of the week. I certainly hope and pray to have good news to report. I keep thinking wouldn't it be wonderful if the fluid in the cyst was Matthew's remaining tumor??? Some people would not believe such a thing could happen....but I'm a believer in miracles.

Our walk is on Saturday....we've raised over $8,000 so far this year.....$22,000 more to reach our goal!

Thanks for the prayers.

Andrea

Saturday, October 1, 2005 7:12 AM CDT

Amazingly, Matthew's walking has *really* improved! And he's no longer asking me for help going up and down the steps. I told Matthew I thought he looked great and he said his left foot no longer hurts. So, even though he didn't fracture his foot from the fall, I suppose he could have hurt it badly enough to effect his walking.

He is quite upset, however, about the surgery. I keep telling him how important it is but he says he doesn't care. I've talked to him about the dangers of his tumor without coming out and saying "it could kill you." All he cares about right now is being at home and being "normal." The worst part of the surgery--for him--is all of the needles. If there were no needles, I think this would be a lot easier.

Yesterday when I took him to school, he would not get out of the car. The principal told me to go inside while a few of Matthew's teachers "coaxed" him out of the car. He was crying, saying he didn't want surgery and just wanted to be with me. A half hour later, he finally got out of the car. He has never "loved" school and now it is even harder......his classes are more intense plus he has other issues he's dealing with. I'm sure he aches for the comfort of his momma and home.

Tuesday is our MRI which I know will be a stress filled day.

Keep saying those prayers--especially for peace for Matthew about his MRI and surgery.

Love,
Andrea

Tuesday, September 27, 2005 6:48 PM CDT

MRI 10/4
3rd SURGERY SOON!!!!

Dr. Carson called today and said that Matthew's cyst is back and bigger than before his last surgery.

Matthew is scheduled for an MRI on Tuesday, Oct. 4 to see how the tumor looks. I am praying that the tumor shows no growth!

Surgery will be required to drain the cyst. Dr. Carson will also "install" a reservoir to collect any fluid that collects in the future. That will allow for drainage via needle aspiration instead of surgery. Dr. Carson also said he would try to remove more tumor from Matthew's brainstem.

I am assuming the surgery will be soon, especially since Matthew is having such trouble getting around. He's been using a wheelchair in school the past few days.

Matthew cried when we told him about the surgery, but Jack and I remained calm which I think helped.

Please, please remember us in your prayers. I'm not sure how we're going to get through another surgery so soon.

Andrea

Tuesday, September 27, 2005 6:25 AM CDT

Well, it has been a loooooong day and I will try to make this short. Up before 6 AM, out the door by 7:30 AM with a reluctant 12 year old.

Got to Hopkins for the MRI around 9 AM. We were late, so had to wait til 10:30 AM. Matthew became hysterical about the MRI he was practically hyperventilating. Matthew doesn't mind the MRI--just the IV needle he needs for the contrast. Matthew has horrible, horrible veins and needles really hurt him.

I had Dr. Carson's assistant paged and she said we should just come to clinic to see Dr. Carson at 1:00--even without the MRI.

We left the MRI office around 11:30, had a bite of lunch and then went up to the clinic.

Saw Dr. Carson around 3:00 PM. Dr. Carson told Matthew he'd at least like him to have a CT scan to see if one of his cysts had refilled with fluid. Dr. Carson assured Matthew there would be NO needles (Matthew even made him pinky promise before he agreed to it). Dr. Carson mentioned that if it is the tumor causing so much
trouble, he would operate again (UGH!) I can't even cope with that thought right now.

3:30 went down for Matthew's CT scan. Dr. Carson said he'd call us later this week with those results. If he doesn't see a cyst, Matthew will have to go back for a MRI...probably have to go under general anethesia (too late to check that spelling) for the MRI.

I am thankful my sister, Kara, took the day off from work to drive us as I was TIRED! Jack stayed home with Luke and Emma so they could go to school and have a "normal" day.

Matthew had to use the wheelchair to get around at the hospital today. He keeps complaining that it is his left foot that hurts...so I'm still not sure if it's tumor related or not. Dr. Carson's assistant checked Matthew's left foot and it seems as though he was sensitive around his incision areas (this is Matthew's club foot that he had 2 surgeries on).

Matthew cried so much today that "it isn't fair" and he "just wants to be normal." I'm not sure how I didn't break down and cry with him.

I pray for answers and that there is an "easy" solution to getting Matthew stronger.


Love,
Andrea

ps Had a message on the machine today from KYW-TV.....we MIGHT be on the news this year! Keep your fingers crossed.

Friday, September 23, 2005 12:26 AM CDT

Matthew is scheduled for an MRI on Monday at 8:20AM. We will be traveling to Hopkins for the MRI and will see Dr. Carson immediately after the MRI.

Matthew's been having lots of problems walking this week and we're worried. Matthew did fall last weekend, so I'm hoping his difficulty is due to the fall....NOT his tumor.

The school has insisted Matthew use a wheelchair to get to his classes. Being in 6th grade, he has lots of walking to do. He was quite upset about that as was I. We both cried (although I did my crying behind closed doors). I HATE to think of him in that @#*()*&#*(&$*(#&(*@&)(&()!)(!*()!&(*&@#()*#)(* chair.

Please pray not only for good results but for him to get stronger.

~Andrea~

Wednesday, September 7, 2005 7:16 PM CDT

Today Matthew got a brace for his foot. Rehab this time around is slow. Matthew has trouble walking and his right arm and hand are still weak. The PT suggested the brace which we're hoping will help with his walking and will be only temporary. The brace holds Matthew's foot at a 90 degree angle (with his leg) and will keep his foot from pointing down.

The PT may also order Matthew a splint to wear at night--which will keep his foot from pointing down. The therapist said we all point our feet down at night, and with Matthew's condition it makes his foot even tighter.

While Matthew was getting his brace, I met a man whose 22 year old son had the same type of brainstem tumor as Matthew. His son's tumor was completely removed 6 years ago and he still has balance issues. His son had 2 surgeries and he said his recovery after the
second one was long. He said that after the first surgery, nerves can quickly reconnect. However, when there is scar tissue involved it is harder for nerves to reconnect.

Today was the first day back to school. Matthew is in 6th grade, Luke is in 3rd and Emma had her first day in pre-k! Emma wanted nothing to do with school--my last image of her today as I dropped her off was her crawling after us, screaming and crying. The teacher called 20 minutes later to let us know Emma was fine--she was sitting and doing what all of the other children were doing.
When we picked up Emma she told us she had fun and didn't want to leave! I knew she'd have a blast after getting past the fact that she would be away from me. It was an emotional day....my baby's first day of school, seeing Matthew start 6th grade (praise God!) and Luke.....sweet, Luke.

On another note: we are up to our eyeballs in boxes! We are moving September 16. We'll still be in the same town (same school district), just moving to a much needed bigger house. We are all so excited and anxious. I am at the point where I just want to pack everything! I told the family tonight might have been the last home cooked meal for a while :) I have been upset that I haven't gotten a teaching job, but am now kind of relieved. Talk about being stressed out! I am hoping a job will turn up after we move. We could really use the medical benefits.

Well, time to pack more boxes. It seems like it's never-ending.

Please pray for Matthew's healing.

Andrea

Wednesday, August 3, 2005 11:57 AM CDT

UPDATE AUGUST 4: Please pray for my friend, Bonita, and her son Alex. Bonita lost her 4 year old son, Christopher, to a brain tumor in January 2004. Bonita has now recently learned that her son, Alex,has a brain tumor. Please pray for Bonita and her family. There is a link to Chris's site at the bottom of our page--please visit and let them know you are praying for them. Thank you.



It is with a heavy heart to tell you that our friend, William, passed away. William was only 10 years old.

William was my hero.

Godspeed, sweet William.

Friday, July 15, 2005 9:09 PM CDT

I can't begin to tell you what an excruciating week it has been, trying to figure out the best thing for Matthew. I got to the point where I truly felt like my head was going to explode. For some children, radiation is no problem...however, I have read many negative things about the effects of radiation on children.

Before our appt. with the radiation oncologist on Tuesday, I prayed we would receive assurance from the dr. that radiation was the path to take. We did not receive that assurance...only more doubt. I kept thinking perhaps radiation would never seem like "right" thing,
however, I started to hear a voice telling me to wait. The past few days the feeling of waiting has intensified for me...I only hope it is the Holy Spirit guiding us in this decision.

I talked to Dr. Carson about our decision--believe it or not he actually called me at my friend's house! He called our house and Jack (knowing how much *I* wanted to talk to Dr. Carson), asked if we could call him back. Dr. Carson told Jack he would call me at our neighbors! I told him about my doubt and he told me that he believes in going with your feelings. He said he has witnessed that when people do not follow their instincts, things tend to go wrong. He told me Matthew is in no immediate danger from his tumor, and that waiting is a reasonable thing to do. He said that if Matthew's tumor became a problem again in another 4-5 years, he would certainly operate...and by then they'd have even better equipment (he told me they just got a new imaging machine this week).

By the end of our conversation Dr. Carson told me he had peace about this decision, too. So with that.....our decision is made. Monday I will contact the radiation oncologist and cancel the MRI and radiation set-up appt.!

Sept/Oct will be Matthew's next MRI. I figure if it shows
growth, we will radiate. I, however, am praying for our miracle and that Dr. Carson will tell us Matthew's tumor is GONE! (25% of Matthew's type of tumor shrivel and die after surgery. After Matthew's 1st surgery his tumor shrunk over 50%. I am now praying it shrinks 100%)!

Please continue to pray for us...we still need your prayers...but I do feel such a relief...I pray it is "blessed assurance."

We love you all!
Andrea

Tuesday, July 12, 2005 6:15 PM CDT

NEW PHOTOS--Matthew's incision


Well, we just got back from our consultation with the radiation oncologist at CHOP. I really don't feel any better or assured we are doing the right thing. The dr. told us the pros and cons....which we already knew.

The things I worry about are the damaging effects of radiation....damage to growth hormone...cognitive skills...and the 1 in 7,000 chance that radiation could cause a malignancy (another tumor or change the existing tumor to a more aggressive type). Radiation could cause a malignancy 20-30 years from now. I'd feel better with 1 in a million chance.

Dr. Carson said NOT doing radiation is like playing Russian Roulette. He feels sure Matthew's tumor would grow back, and could grow back in a place he could not get to. I feel like DOING radiation is like playing Russian Roulette in that we could do more damage to Matthew.

I am at such a loss. I wish I felt in my heart that this was the thing to do. This is by far the hardest decision I've ever had to make.

The radiation oncologist said that it is his hope the radiation would kill the remaining tumor...not necessarily shrink it, but keep it from growing.

The only thing that makes me feel it is the thing to do is Dr. Carson's advice and the fact we know another Matthew with the same type of tumor in the same location as our Matthew----he had radiation and he is now tumor free.

Please pray we make the best decision and for God to watch over Matthew and keep him safe.

Love,
Andrea

Monday, July 11, 2005 8:46 PM CDT

NEW PICTURES POSTED!!!!!

Tomorrow we have a meeting with the radiation oncolgist. While the visit is just a preliminary consultation, Jack and I are still very nervous.

Please pray we receive some sign or feeling that this is the right thing to do for Matthew....that we come home feeling encouraged and hopeful for Matthew's complete healing.


Thanks~
Andrea

Saturday, July 9, 2005 8:20 AM CDT

NEW PICTURES POSTED!!!!!


Matthew's Miles Update: We just received our first auction item--a signed photo of Sting!




Matthew and Luke spent the night with their aunts. Matthew had some hesitation about staying, but then decided to "try to sleepover."

Yesterday I took the kids to the mall so they could buy a toy with the money from our change jar. While at the mall we, of course, had to stop at Auntie Anne's and get pretzels and icees! While at the register, Matthew handed me some of his change and asked me to put it in the jar. I looked over and saw a Children's Miracle Network jar. Matthew told me he wanted to help the children in the hospital. It melted my heart!

We then had to stop at the wishing fountain so everyone could make a wish. Luke wanted to share his wish with me and told me he wished that everyone in our family would live happy lives. Isn't that great?? Here I was expecting his wish to be for another video game :)

It looks like it's going to be a hot, sunny weekend. I am hoping to get Matthew to the pool as it would be great therapy for his leg and arm.

Keep praying!

Andrea

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Thursday, July 7, 2005 11:03 AM CDT

We traveled to Baltimore yesterday to have Matthew's sutures removed. Matthew did great...he didn't even flinch and said it didn't hurt. I remember him screaming last time!

I did ask about Matthew's final pathology and they confirmed his tumor is still a JPA (thank God!) I sent an e-mail to the pathologist at Hopkins regarding research he's doing on Matthew's tumor type and was disappointed he was only able to get a small sample for his research. I was really bummed to hear that. I was hoping Matthew's surgery would create some greater good. Well, atleast he has some tissue to use.

Matthew had his 2nd PT session this morning--today taking measurements of his arm and hand. I think Matthew's biggest thing to overcome is his weakness in his right hand. Mike, the therapist, said Matthew's doing great and feels confident Matthew will do well. It is hard to believe we have gone through this before. Mike did say Matthew's "problems" seem different this time around, but perhaps easier to overcome.

Well, Matthew is waiting for me to play Clue. Can you believe he's bored playing video games???? I went to the toy store the other day and bought some board games....Clue seems to be his favorite so far.

Keep praying!
Andrea

Tuesday, July 5, 2005 1:02 PM CDT

We had a wonderful weekend visiting with a friend I have made over the internet. Denise is the mother of Kessia--a beautiful girl who lost her battle with a brainstem tumor at the age of 7. Denise and her family have gone on to do tremendous things in memory of Kessia. One of their accomplishments has been to establish a cottage/vacation getaway for families with a child who has been diagnosed with a terminal illness or parents who have lost a child. Please visit Kessia's site (link below) to read more about this wonderful family. The amazing thing about meeting Denise is that she lives in Australia! Being able to meet her has been a gift from God and something I will always cherish.

Update on Matthew: Today was Matthew's first PT appt. We are going to the same PT as we did four years ago, so at least it is someone familiar to Matthew. The PT said Matthew's strength in his right leg is great! The main problem Matthew has to overcome is the flexibility (there is a technical term which I don't remember) in his foot/ankle. The PT took lots of measurements of Matthew's strength/flexibility in his legs and feet. Next visit he will assess Matthew's arm/hand.

Right now Matthew is outside playing with Luke and Emma (yahoo!!!) What a great sight to see.

What's next? Tomorrow is our trip to Hopkins to have Matthew's sutures removed. PT on Thursday and Friday of this week, followed by 3 days next week. July 12 is our visit with the radiation oncologist at CHOP/HUP.

Please continue praying for Matthew's recovery and for the decisions we need to make in the days ahead.

God bless~
Andrea

Tuesday, June 28, 2005 8:26 PM CDT

***3RD ANNUAL MATTHEW'S MILES SET FOR OCTOBER 8, 2005***

Proceeds from the walk this year will support brain tumor research of the Children's Cancer Foundation



Matthew seems to get better and stronger each day. He spends most of his time on the sofa playing with his new XBox, but we also have been working on some exercises to strengthen his hand/arm and reading.

Yesterday Matthew enjoyed a visit with a school friend. Tonight we had a nice visit with some neighbors--later my sisters stopped over. When you are in the house ALL day, it is nice to see some new faces :)

Matthew told me tonight that he has a goal--to be able to write with his right hand. He told me he's going to have a goal just like Batman (Batman's goal was to save the world). Matthew actually asked to use his putty and we tossed the beach ball back and forth tonight. It is great to see him be determined to get better!

Please pray as we are faced with the decisions we must soon make. I have heard some controversial things about CHOP and am now second guessing myself. I know St. Jude is a #1 pediatric hospital, however, I also know how much Matthew enjoys being home. I am really torn about what to do. Please, please pray for us to make the right decision for Matthew. I truly believe that each person can find their miracle at a different place. I'm just not sure where we are meant to go.

Matthew told me tonight that the one thing he really wishes he could do, but can't, is run around and play. Soon, Matthew....very soon.

I can see Matthew proclaiming, one day, "This is my story, this is my song, praising my Savior all the day long."

Keep saying those prayers!

Andrea

Saturday, June 25, 2005 8:15 PM CDT

Can you believe we're home???? And let me tell you, being home is the best medicine for Matthew! He is on the sofa watching Luke playing a video game...talking and joking. It is GREAT to see him smile! He was so miserable in the hospital, barely talked to anyone.

His biggest complaint right now is that his stomach hurts. He doesn't have much of an appetite and has been constipated, although he was able to go twice since we've been home (yeah!). In the hospital, he would be in the bathroom for over an hour trying to go.

I still can't believe we're home! Only yesterday Matthew was throwing up, tired and depressed.

He is getting around pretty well, but will start out-patient therapy soon. His right hand is already stronger since the surgery. He was eating cereal with it in the hospital!

We won't know final pathology til next week, but feel confident it is the same type of tumor. We really wish it was now over, but realize we still need to go through 6 weeks of radiation. I pray we make the right decisions for Matthew. Today I was talking about going to CHOP vs St Jude with Kara and when I said CHOP, the light
flickered. I will take that as our sign to go to CHOP. I think being close to home is great medicine for Matthew, plus they are a wonderful hospital.

Please pray for Matthew's continued recovery, for his incision to heal, for his spirit to soar, for God to guide us in the decisions we need to make, and that the radiation treatments will be easy on Matthew and kill the rest of Matthew's tumor.

Dr. Carson stopped by the room today (unfortunately I was out picking up Matthew's meds), but he told Jack he has a good feeling about Matthew. I will forever hold onto those words! He told Jack about a boy in MN who had the same type of tumor as Matthew's and his has completely disappeared--that was 10 years ago! Jack told Dr. Carson we were hoping that would be the case for
Matthew. Dr. Carson then told Jack that sometimes the Lord works in mysterious ways. Perhaps, for some reason, we have to go through radiation to obtain Matthew's healing.

Dr. Carson is such a wonderful, humble man. Please say a prayer of thanksgiving for his skill and faith. When I saw him in the pre-op room before Matthew's surgery, I felt a peace wash over me. I know the Lord was watching over Matthew on Tuesday. The 7 hours in the waiting room were torterous.....I am so glad I had hymns to listen
to and my Bible to read...as that was all I could do...talk to God. The hymn that got to me was "This is my story, this is my song....".

When Dr. Carson came out and told us he felt there was an excellent chance that radiation would kill the rest of Matthew's tumor, I burst into tears and hugged him. It was a moment I will always remember.

We've had a long, rough few years but I couldn't feel more blessed right now. Blessed for my loving family and friends, for skilled surgeons like Dr. Carson, for being at home, and for God's goodness and mercy.

Keep praying!

Love,
Andrea

Matthew Update: June 23, 2005

Matthew had PT & OT today, which is physical therapy and occupational therapy, which further means leg and arm/hand therapy. Matthew walked down the hall once, got in his bedside chair at least once, and made a couple of trips (on foot) to the in-room bathroom. The rehab lady told us that Matthew has the strength for the walks, but that his balance isn't there and that stairs would present a challenge. He may stay based on our ground floor when we get home.

No special visitors today. Matthew is expecting a classmate friend tomorrow, and two of his 5th grade teachers. His aunts will be back for SAT morning.

Matthew seems down/depressed. He's a bit uncooperative with the nurses, but eventually he does what they want. He likes to be in control and the hospital routine takes away a lot of his control, so he acts out. He'll make a stand about an issue but, unfortunately, that stand is often on an issue that is really nonnegotiable. When he loses that control it upsets him. He tends to keep his frustrations/anger/resentment bottled up for a while in silence, but then, when the floodgates open, his response seems out of proportion. And it is, but it's because he's been holding it in, holding it in, until he just can't any more.

Dr. Carson came by later today and after his visit the assistant removed the head dressing. If the wound was dry, Carson said they would leave it exposed, if wet, they would put on a smaller dressing. Fortunately, the wound was dry so we can see Matthew's hair again. Luke and especially Emma were a bit, um, indelicate about Matthew's head being shaved and what the stitches looked like. His head looks like it was shaved in a wider swath than last time (we have pictures at passarella.com), but not as completely or in as much of a straight line. Andrea and I both think the incision line is just as long as last time. Maybe it's an inch shorter, but if so, not much more than that.

Anyway, Dr. Carson discussed the scans (post op MRI) and said that there are two types of tissue involved with the tumor, a fibrous kind that is intertwined in the brain stem, which he described as looking like a bundle of co-axial cable and which doesn't respond to sucking; the other type was vascularzised with blood vessels, shows up bright on the scans (unlike the fibrous matter) and is much more suckable. Of this latter type, he believes he removed 75% before the brain collapsed into the space vacated by the tumor. (That's in addition to the fluid-filled cyst which he drained.) I asked about how much was removed and he showed a circle with thumb and forefinger that looks about the size of a 'super ball' - if you have kids, you'll know what size that is. Smaller than golfball, larger than a marble. He also said the fibrous/dark matter hadn't changed much at all since Matthew was diagnosed. It's possible Matthew had this part since birth, I suppose.

He went on to advise radiation again (6 weeks), and asked the assistant to schedule a consult with us and the radiation guy there. He believes that if we do nothing, we will be back in this same position again in four years, that that remaining suckable tumor will grow once again, probably with cysts again, which put pressure on his brain. Also, he said that getting through the scar tissue was hard, but that it will forever mark the entry point for any future surgeries, and he went on to tell us that the tumor is in a difficult area to reach. There is a chance that if we do nothing and wait for regrowth, that the regrowth could be in an even more untenable position. He described it as playing russian roulette, which is a very sobering image. Radiation has the chance of shrinking or getting rid of the rest of the unreachable 'suckable' tumor. If whatever makes that grow gets killed off by the radiation, Matthew could be rid of this. And yet there is a chance that radiation could change its characteristics, and maybe not for the better. But time and chemo could cause the same type of transformation.

It seems as if now is the best chance to try to finish this off. He said Matthew could start radiation as soon as a week and a half after his sutures heal.

(BTW - Today also happens to be Andrea's and my 15th wedding anniversary. Certainly not the kind of celebration we envisioned, but we know there is hope for Matthew and that is more than enough.)

Good night,
-Jack

Thursday, June 23, 2005 3:11 PM CDT

I really don't have much time to update as Emma is with me in the computer "lab" (there is one pc and one lap top). Matthew is pretty grumpy right now. He hates being out of control, and has never been one for change. He did take a walk down the hall today, but it is hard getting him out of that bed.

I am anxious to share with you all my thoughts over the past few days, especially the day of Matthew's surgery. I know the Lord heard our prayers and was watching over Matthew on Tuesday. I also believe Matthew was surrounded by many angels in that operating room.

Pray for Matthew's quick recovery, an improved disposition, and good news from Dr. Carson. I am so thankful to God for His goodness and mercy.

I will most likely not get a chance to write much until we get home. I just wanted to say thanks for the prayers and messages in the guest book.

Keep saying those prayers!

God is Good!

Love,
Andrea

June 22, 2005: Matthew Update

Matthew was moved to a private room. A 100 times better than PICU. There's a bed where Andrea can sleep all night, a TV w/ Nintendo 64 (dated, but still fun, although Matthew hasn't done much more than watch TV), and a private bathroom w/ shower stall. Tomorrow a friend from school is visiting him. Friday two of his teachers will come down to Baltimore for a visit, and his aunts will be back for the weekend, so he should have visitors through the weekend.

Dr Carson stopped in briefly and mentioned that the incision, while located in the same spot as his last surgical incision, is not as long as the old one, which is good news. Matthew had his post-op MRI this evening. About a 3 hour operation, waiting for transport to and from the MRI room taking most of that time. I guess we'll know MRI results, but I'm not sure about that.

Matthew got rid of his catheter today, a big relief for him. He also got rid of a second (spare) IV in his foot and about 4 or 5 electrode pads. We had to "coax" him into a chair, something the doctor wants him to do several times a day. He played hospital bingo (over the TV) and while he didn't get bingo (some of this occurred during his move to the chair), all the kids who play get a prize and he got what he wanted, some miniature fighter planes.

Matthew wanted to get rid of his head bandages. They WILL change that dressing tomorrow, but i have a feeling he may get a smaller one, not a complete removal. It will be the first chance for the doctors to examine his incision as well. During the MRI, the tech was able to fix Matthew's ear, which had been folded over under the wrap. He also had a 'lost' fiducial back there, which Andrea removed. Later, Matthew walked to the private bathroom, so that was big progress from the earlier struggle to get him to move from bed to chair.

They have patient controlled medicine (PCA), and Matthew hadn't pressed the button at all. The nurses and rehab lady would press it when they had to move him or his stretcher, but he never needed to press it on his own. The "pain team" (yes, that's what they call themselves) said they might lower his dosage of pain medicine so that he won't stay sleepy all day. The trick is to find a balance between no pain and alertness.

Emma will really miss her Momma tonight. She keeps asking me if I'm also going to the hospital o/nite and I keep reassuring her that I'm going to stay with her. So, it continues to be a one day at a time struggle for all of us, in our own ways.

Good night.
-Jack

Tuesday, June 21, 2005 9:18 PM CDT

Matthew Post-Surgical Update:

Hi, Everyone -

Long day. We were up before 5am. Matthew slept until 6am. We rushed to the hospital, got to the right floor and had no idea where to go. 6:30 by the time we got to the right place. Matthew was tired but calm, chose grape flavor for his anesthesia mask because the alternative to the mask was an IV. Dr. Carson came in at 7:30 and was surprised Matthew wasn't already in the O.R. Andrea said a prayer with Dr. Carson and then Dr. Carson appended his own prayerful message. Andrea went into the O.R. with Matthew (only one parent is allowed to go), and she said that Matthew seemed to get a little freaked out by the O.R. itself. She said it freaked her out a little and she's an adult, so she could only imagine how scared he must be. Andrea left once he fell asleep, before 8:00.

We stayed in the waiting room for the phone call that the surgery had begun. The receptionist would transfer the call from her desk to a phone in the front of the waiting room. She said it normally takes 40 minutes to an hour before they call. We waited over two hours and no call. Finally, the physician's assistant we know stopped by and said she would check. At 10:10 she told us that they had begun 15 minutes prior. A miscommunication about notifying us. A theme that would repeat itself later in the day.

By 12, we were told that Dr. Carson was studying the scar tissue, and looking under the microscope. The impression was that the surgery hadn't even begun. We were expecting a 7+ hour surgery, so we thought the day would run very late for us. At 1 or so, we were told that Matthew was fine. Then another call at 2:30 that they were closing. What would normally be greeted with relief was a cause for concern for us. Our first thought was that there was a problem and Dr Carson was unable to resect as much of the tumor as he had planned. And so we waited, another hour before we spotted Matthew being wheeled down the hall. Andrea heard a voice call "Momma" and was startled, realizing it was Matthew. We ran out into the hall, surprised that he was conscious. He had yellow betadine streaks on his neck and chin, and his head was completely wrapped in gauze.

They took him to a post op room and we finally had a chance to Dr Carson for the first time in around 8 hours since that morning prayer. He said that he thought the tumor was still a jpa (junior pilocytic astrocytoma), the least aggressive type of brain tumor. Sometimes these tumors can change or mature into something more troublesome. He told us that he drained the cyst, as planned and that he removed (resected) a good portion of the tumor. Actually he said he 'sucked out' as much as he could. This type of tumor is apparently very suckable. So he sucked out as much as he could without scraping good brain tissue. After this stage, he said the brain 'collapsed' into the area formerly occupied by the tumor, and that that was a good thing, because it meant that all that pressure was relieved from the brain. He thought pre-op that the growing fluid-filled cyst was responsible for many of Matthew's increasing deficits, if that's the right was to phrase that. He was getting weaker on the right side, wasn't using his right fingers that much, if at all, and his gait had become more erratic, along with his balance. He also seemed to tire more easily, and avoided escalators because the height scared him, which I think is a side effect of his uncertain balance.

Within an hour Matthew was transferred to PICU (pediatric ICU), we were told to wait and that we would be able to go back, two of us, but only one chair. My parents had arrived from the Philly area around 2:30. We were never called back (waiting again), and my parents eventually had to leave without seeing him. After two hours waiting in the small PICU waiting room, I saw Matthew's stretcher being wheeled out of PICU, and we had never gone back! They told me they were moving him to the other side of PICU and the nurse seemed surprised we hadn't been back. ("It's been crazy.) IOW, another communication breakdown.

Matthew had been agitated since waking after surgery. Demanding his clothes, asking for something to drink (a no no), wanting his tubes and monitors removed, and actually rearing up into a sitting position! They calmed him with some increased pain medication and told us that as kids get older, into their teens, they sometimes wake up 'wild'...Dr Carson stopped by and said after surgery on his patient's brain stem, he likes to see that kind of activity.

At nine, exhausted, we left the hotel to get some sleep. We've had about 9 hours in the last two days, and our waking hours have been filled with anxiety and worry. Matthew had settled down and had been sleeping for a while. Where he is, we can only sit in a single chair or stand at his bed. The rooms have better facilities for parents and family. If Matthew gets through the night in the same stable condition he will be moved to a regular room...however, they cautioned us that that depends on availability. If no rooms are available, he would have to stay in PICU another night. I really hope that doesn't happen as PICU is very uncomfortable and nerve-wracking. It's hard to really stand by the bedside with the constant nurse traffic and there's just too much going on to feel comfortable there.

Dr. Carson did not want to say how much of the tumor remains until the post-op MRI, which will happen in a few days, I imagine, after swelling goes down. But he said that in talking to the medical board there about Matthew, and how much he believes might be left of the tumor, he thought there was an excellent chance that radiation could get rid of the rest. Although we weren't looking forward to radiation daily for 6 or more weeks, Andrea latched onto the 'excellent chance' news and hugged Dr Carson. If there's an excellent chance to finally be rid of this tumor, then radiation would certainly be worth the effort. So, for now, that's our biggest hope. How or when or WHERE he would get radiation is up in the air. If it's not done locally, some or all of us would need to relocate. I hope that doesn't happen. I don't know how much variety there is to radiation treatment, but I'll be praying that the best kind for Matthew is available near us. We live 20 minutes from Philadelphia, which is one of the 5 biggest cities in the U.S., so I'm hopeful we'll have options nearby.

Again, please excuse the typos. I'm beat, emotionally and physically. Andrea's aunt is now watching Emma and Luke, now that Andrea's sisters have also left for home. I hope she can keep those two entertained without losing her sanity. She never had any kids of her own, so it will be a challenge. :-)

Thank you all for your prayers. Maybe there will be some kind of closure here, an end to this lingering tumor. I told Andrea I would write a book about Matthew's story when he was finally cured. Right now, it's an unfinished story. But I'm hopeful the elimination of the tumor will give Matthew the first happy ending of his surgically eventful life.

Please wish us good luck and positive developments the rest of this week.

Good night,
-Jack

Friday, June 17, 2005 12:35 AM CDT

We just received a letter from the American Brain Tumor Association telling us a two year Fellowship has been dedicated in honor of Matthew!

The Fellowship has been established at Johns Hopkins. Any papers published or presentations made would carry the attribution: Matthew Passarella/American Brain Tumor Association Fellowship. The research project is "Inhibition of Pediatric Brain Tumor Growth by Notch Pathway Blockade."

We feel honored and overwhelmed!

I spoke with the neuropathologist at Hopkins today (Dr. Burger, who is considered one of the best neuro-paths in the country). Dr. Burger is currently conducting research on Matthew's type of tumor. I asked that if they can get enough tissue, that it be used for his research. Please pray they get enough for this important research!!

Please continue to pray for:

strength for all of us (especially Monday night, that's going to be tough on me).

God's peace upon us (especially Matthew--I don't want him to worry)

that the scar tissue will not be an issue

God to help Dr. Carson see all of the abnormal tissue

God to guide Dr. Carson's hands so he is able to remove ALL abnormal tissue and drain the cyst--SAFELY

God to move and position the tumor so Dr. Carson CAN remove it all (yes, I am a believer in miracles!)

God to keep Matthew safe during the surgery--there are so many risks (paralysis, coma, death)

Matthew's quick and full recovery--and that there are no complications

that Matthew's tumor type is still a JPA

that NO further treatment will be needed

Matthew's incision to heal (last time we were readmitted 2 weeks after surgery due to his incision leaking)

I can't tell you the overwhelming feeling of knowing all of the prayers being said for us. I remember the day of Matthew's last surgery--I felt like a warm blanket was being draped over us--it was an amazing feeling!

I know the Lord will be in the OR with Matthew and Dr. Carson. I also know Matthew has many angels in heaven who love him dearly. I believe my mom and dad will be watching over him, too.

God bless us all,
Andrea

Tuesday, June 14, 2005 6:23 AM CDT

Yesterday we met with Dr. Carson to discuss Matthew's surgery. Our appt. was at 1:45 but we did not see Dr. Carson until 4:30! Dr. Carson showed us Matthew's MRI from February and how Matthew's cyst is pushing up on his tumor. Dr. Carson said he will drain the cyst and then remove as much abnormal tissue as possible (as he said, "buying us a lot of space"). Dr. Carson said he believes Matthew's increased weakness on his right side is due to the cyst, not the tumor. He told us some of the tumor is in Matthew's midbrain which can not be touched. I, however, am still going to pray for our miracle and that Dr. Carson can remove it all. Dr. Carson told us to keep saying our prayers and that he will, too. Boy does it feel great to be in the hands of not only a highly skilled surgeon but one who believes in the Lord.

We were hoping to be out of the hospital by 3:00 so we could go to the Inner Harbor and have dinner before the Orioles game. Needless to say, that did not happen. We didn't get out of the hospital until after 5:00 and had to be at the game by 6:15. We all got to go on the field before the game. I am not a huge baseball fan, but man-- to walk out onto the field was exciting! Matthew got a baseball and t-shirt which he got autographed by some players. We met Elrod Hendricks (the bullpen coach), Sidney Ponson (a pitcher--who was very nice), Daniel Cabrera (another pitcher) and we saw Sammy Sosa in the dugout, however, he did not come over. I told Matthew that his pop-pop (my dad) would have been thrilled to be with us at the game. Matthew's reply: "He is." And, I know he was!

Since we had not had dinner, Debbie Bell of the Orioles took us to a Suite where we enjoyed some delicious turkey sandwiches. Matthew and Luke loved the peanuts and cotton candy. And, Luke ate his first hot dog! After spending about an hour in the suite, we went to our seats behind home plate. Unfortunately, it soon started to rain.

It was a wonderful evening--one we will always cherish. We are deeply grateful to Debbie Bell and the Orioles organization for treating us so nicely. I told Debbie it was the first special priviledge Matthew's had since being dx four years ago. Matthew does not like the spot light as he is quite shy, however, I could tell he felt quite honored last night.

What's next? Monday, June 20 at 10:00 am Matthew has an MRI. Please pray for an easy, uneventful IV and that Matthew is ok with keeping the fiducials on all day. Matthew hates being "out of the norm" and I certainly don't want him to pick them off (these will help Dr. Carson the day of the surgery). We are hoping that we can enjoy the afternoon at the Inner Harbor.

Tuedsay, June 21 we are to be at the hospital at 6:00 am. Surgery to begin at 7:45 am. Dr. Carson told us he did not schedule anything else for that day as he wants to dedicate as much time as he needs to Matthew.

Please pray for:

strength for all of us (especially Monday night, that's going to be tough on me).

God's peace upon us (especially Matthew--I don't want him to worry)

that the scar tissue will not be an issue

God to help Dr. Carson see all of the abnormal tissue

God to guide Dr. Carson's hands so he is able to remove ALL abnormal tissue and drain the cyst--SAFELY

God to move and position the tumor so Dr. Carson CAN remove it all (yes, I am a believer in miracles!)

God to keep Matthew safe during the surgery--there are so many risks (paralysis, coma, death)

Matthew's quick and full recovery--and that there are no complications

that Matthew's tumor type is still a JPA

that NO further treatment will be needed

Matthew's incision to heal (last time we were readmitted 2 weeks after surgery due to his incision leaking)

I can't tell you the overwhelming feeling of knowing all of the prayers being said for us. I remember the day of Matthew's last surgery--I felt like a warm blanket was being draped over us--it was an amazing feeling!

I know the Lord will be in the OR with Matthew and Dr. Carson. I also know Matthew has many angels in heaven who love him dearly. I believe my mom and dad will be watching over him, too.


I will post our hospital information next week.

God bless us all~

Andrea

Friday, June 10, 2005 6:08 PM CDT

Today Matthew had his blood work done. I don't know why I thought this would be easier than an IV. It took 4 techs--and 2 attempts--before they got the 3 vials of blood they needed--UGH! Matthew cooperated, but did cry. I know it must have hurt. I was so upset when I heard the tech say his vein blew. At one point Matthew's chin was quivering.

Afterwards, in the car, Matthew asked if he has to have a MRI before the surgery. My heart sank as I told him "yes." He replied he was going to run away and live on the streets.

I feel so badly that he has to go through so much. When we were in the lab I kept thinking why couldn't God at least given him good veins????

Tomorrow Matthew is having his good friend over for the day. We are planning on going to the movies, going out to dinner and then his friend will be sleeping over.

Well, Emma is waiting for me to take her to the playground.

Please pray for Matthew!

Andrea

Thursday, June 2, 2005 2:45 PM CDT

Matthew had his physical today and all went well. His hearing and vision checked out great. The best part, however, is that he didn't need any shots (yeah!) Matthew was worried he'd need a shot--but he is ok for another year or two. We do, however, have to get some blood work done next week.


Love,
Andrea

Wednesday, June 1, 2005 9:47 AM CDT

Just a short update to let you know we enjoyed a short weekend trip to the Poconos. The kids had fun swimming, bowling, and golfing. Matthew liked playing ping pong and Luke enjoyed his first horse back ride!

I recently found out I will be meeting a special friend! Denise, who lost her beautiful daughter-Kessia-to a brain tumor, will be in the US the beginning of July and will be stopping by NJ for a visit! Although Denise lives in Australia and we've never met, she has become one of my dearest friends. I am so excited about meeting her. You can read more about Kessia and the charity her family has organized through Matthew's Miles Early Angels, or through the link at the bottom of this page.

Tomorrow Matthew has an appt for a physical.

I will post pictures from our trip soon.

Love,
Andrea

Wednesday, May 25, 2005 4:17 PM CDT

We are starting to get the details of Matthew's surgery, which is getting me more anxious. I try not to think about it, but it's hard when we have plans to make, etc.

On June 13 we are scheduled to see Dr. Carson for a pre-op visit. This works out nicely as we have been invited to an Orioles game that evening (courtesy of the Baltimore Orioles and Giant Food). Matthew will be the "bat boy" for the evening. We will all get to go down on the field for practice but only Matthew will be allowed in the dug out to get autographs and pics. How cool is that? Even though we live in the Philly area, I may have to become an Orioles fan :)

On June 20 Matthew is scheduled for his pre-op MRI at 10:00am. During the MRI they use a wand which maps the brain that they use the day of surgery. Matthew will be required to leave fiducials (?) on his head which are important for surgery. Those of you who know Matthew, know that he does NOT like to look out of the norm--that should be fun!

We are to be at Johns Hopkins at 6:00 am on June 21 (surgery scheduled for 7:45 am). I can not even let myself think about the night before surgery. I remember what I felt like last time--it was one of the worst nights of my life.

June 21 happens to be my grandmother's birthday (she is now deceased), June 22 will be the one year anniversary of my dad's death and June 23 will be Jack's and my 15 wedding anniversary. Needless to say, it'll be an emotional week.

Through all of this fear and darkness, we have again witnessed God's love and mercy. We were planning that I would stay at Hopkins alone with Matthew for the week--and that Jack would remain home with Luke and Emma---that is, until friends of ours rented a 3 BR townhome for us that is only 2 blocks from Hopkins! It even has a yard the kids can play in. I am so relieved and happy that my family will be close by. And, my sisters will have a place to stay with Luke and Emma the day of the surgery. I was in tears when I found out about the townhome. It is amazing to see God at work in our lives and in those around us.

In the mean time, Matthew will have to get a physical along with blood work and a tetanus shot. I know we will all start to feel the tension.

Please pray for us all--especially for Matthew's complete healing!

Love,
Andrea

Wednesday, April 6, 2005 10:09 PM CDT

Today we attended the Giant Food Triple Play kick-off at Camden Yards in Baltimore, MD. To my surprise, there were about 200-300 people in attendance (most of them Giant Food executives). I was honored to be asked to speak on behalf of the parents of the poster children and I have posted below my speech.

xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx

I am sure many of you here today have been touched by cancer. Having a loved one diagnosed with cancer turns your world upside down and makes it so easy for fear to take over. Cancer knows no boundaries—it can strike anyone, anytime. Everyone is vulnerable. I lost both of my parents in the past five years to cancer and, as hard as that was, I can tell you the pain of those losses was nothing like the pain and despair of seeing my child suffer.

While it has been a hard road to travel, there has been some good along the way—this event being one of those good things. We are excited about being a part of this campaign to raise awareness of childhood cancer and money for research and building facilities. We also feel blessed to meet so many wonderful people we otherwise would have never met. I am grateful for the opportunity to tell you a little about our son, Matthew—the reason my family is here today.

Matthew was born with a club foot. At 2 days old Matthew needed to have his foot casted. In order to correct his foot and for Matthew to be able to walk, he went through months of having his foot casted, special shoes and surgery at 9 months old. At the time, I couldn’t imagine experiencing anything worse than those days at the cast clinic. While seeing our first born child go through all of this was hard, we were always thankful Matthew’s condition was something that could be “fixed.”

In the fall of 2000 (when Matthew was in second grade), his teacher told us Matthew wasn’t using his right hand. Matthew was also having falling incidents, which we contributed to his club foot. In October, we took Matthew to the pediatrician, who assured us that the strength in his right arm and hand was fine.

On December 28 Matthew had his second foot surgery. After this surgery, Matthew could not use his right hand or arm. His arm was so weak that he could not raise it above the bed.

On January 11, 2001, two weeks after Matthew’s foot surgery, we took him to the pediatrician because of his arm. We had no idea what could be wrong, just that something was not right. After her examination, the pediatrician told us she wanted us to get a CAT scan immediately and that we should be very worried. By 5:00 pm that day we learned Matthew had a mass in his brain. I felt myself spiraling down into this deep, dark pit, feeling alone and full of despair.

An MRI the following morning confirmed that Matthew had a tumor in his brainstem. The doctor told us Matthew, our then seven-year-old son, had a brainstem glioma with a prognosis of 6-9 months. We were told a biopsy would be too risky and pointless and that all we could do was have Matthew get radiation treatments which would alleviate his symptoms….but not cure him.

We had nowhere to turn but to God. We were given a miracle and I cannot tell Matthew’s story without acknowledging what God has done for us. We sought 2nd and 3rd opinions and I feel we were led to Johns Hopkins where, after reviewing Matthew’s scans, the doctors felt a biopsy should be done. Matthew had surgery on February 5, 2001 during which the surgeon was able to remove over half his tumor. When the final pathology report was in, the doctor came to Matthew’s room and told me, with tears in his eyes, that Matthew had a low-grade tumor, not an aggressive glioma. He told us Matthew would be able to celebrate many birthdays to come.

Matthew went through months of rehabilitation, learning to walk again and regaining strength in his right side. By his 8th birthday, Matthew was fully rehabilitated. We have been given time—time to enjoy our son and time for a cure to be found. We feel so blessed for the past four years—to see him growing up with his brother and sister.

Unfortunately our journey is not over. Our miracle is not yet complete, but a work in progress. We recently found out Matthew’s tumor has grown. He is scheduled for surgery with Dr. Ben Carson at Johns Hopkins on June 21. Because of Shirley Howard, the Children’s Cancer Foundation and Giant Food, we know Matthew’s surgeon will have state of the art instruments to perform his operation in an operating room designed especially for children.

We continue to pray for the day Matthew’s tumor is completely gone and for the day when a cure is found for brain tumors, leukemia, neuroblastoma, and sarcoma—all the cancers that afflict our children.

I think I speak for all of the parents here today when I say we are thankful for your support. Thank you for giving us hope that one day our children will be cured and they will be able to experience all that life has to offer.

xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx

The campaign will run from April 17 - July 2 and they are hoping to raise $1 million for the Children's Cancer Foundation.


God bless~
Andrea

Saturday, March 5, 2005 1:58 PM CST

PLEASE pray for our friend Benjamin


Beautiful Sarah Melody and Emerald
became angels. I encourage you to visit their sites and offer your prayers of support to their families.

Matthew's surgery has been scheduled for June 21.



God bless us all~
Andrea

Thursday, February 24, 2005 6:23 PM CST

PLEASE pray for our friends Melody Benjamin

Beautiful Sarah became an angel at 2:50 am. I encourage you to visit her site and offer your prayers of support to her family.


Two days after learning Matthew would need another surgery, we received an exciting phone call. Johns Hopkins called telling us the Children's Cancer Foundation was looking for a poster child from Southern New Jersey.

Here's the story: SuperG/Giant Food Stores will be raising money this summer through a scratch off card called "triple play." The money raised is going to be given to the Children's Cancer Foundation. The Children's Cancer Foundation is run by an 80 year old woman (with the help of one secretary). 90 cents of every dollar is given to cancer research. In 20 years the President of the Foundation, Shirley Howard, has raised over 20 million dollars!!! She raised all the money needed for Dr. Ben Carson's pediatric neurosurgical OR. You can see a very interesting video of Dr. Carson and the OR at Children's Cancer Foundation

SuperG is anticipating to raise a million dollars through this promotion! Matthew's picture will be on posters in South Jersey Super G's, in flyers, newspapers and promotional ads.

I have never thought of Matthew as a poster child, simply because he is so quiet and introverted (I warned Mrs. Howard of this, also :) However, I was excited that we could help raise money for children's cancer research.

It has been a true blessing to meet Mrs. Howard. She has done so much for children suffering from this disease and is a true servant of the Lord. If we have Matthew's Miles this year, I think we will give the money to the Children's Cancer Foundation. Mrs. Howard she would not deduct any administrative costs from the money we raise, and we could present a check to Dr. Carson ourselves.

Angels do exist.

God bless,
Andrea

Wednesday, February 16, 2005 5:42 PM CST

PLEASE pray for our friends Melody Sarah Benjamin

2/21 UPDATE:
Beautiful Sarah became an angel at 2:50 am. I encourage you to visit her site and offer your prayers of support to her family.

We got the call today from Dr. Carson's office. There has been slight tumor progression, so Dr. Carson feels we should proceed with surgery and debulking as much of the tumor as possible...possibly followed by chemo or radiation. Unless we notice more changes in Matthew, we will plan to have surgery after the school year (mid-June).

I decided to tell Matthew about the possibility of surgery and, I guess that was not a good idea. Matthew became really upset, yelled at me and ran up to his room. I truly don't want to cause Matthew anxiety or worry, but thought I should tell him this news to prepare him for surgery. I guess I should have waited.

Matthew has been crying all night....telling me he hates drs. and nurses...he hates this world because it gave him a tumor. Now he's complaining his chest hurts. I guess I made a mistake I'll never forgive myself for.

Andrea

Saturday, February 12, 2005 8:12 PM CST

PLEASE pray for our friends Melody Sarah Benjamin


We haven't heard from Hopkins, so I suppose the tumor board will review Matthew's scans this coming Tuesday.

We are doing well--both boys are recovering from strep throat.

Please visit the sites I have posted above, those children and their families could use your prayers.

God bless~
Andrea

Friday, February 4, 2005 5:45 PM CST

February 10:

PLEASE pray for our friends Melody Sarah Benjamin

Well....Dr. Carson said that Matthew's recent MRI is "stable" compared to Sept. He does want to compare it to other MRI's to make sure it truly is stable. If Dr. Carson finds the tumor has grown over the past year or two, he recommends surgery this summer--allowing Matthew to finish the school year. (Surgery plus rehab would be a 6-8 week recovery period).

Dr. Carson said this time around could be followed by radiation and a mild oral chemo. I'm not worrying about that yet, as that is not definite. If Matthew is faced with another surgery, it'll be my prayer that Dr. Carson is able to surgically remove the entire tumor. Total resections of brainstem tumors is rare due to the "high real estate" location, however, I am a believer in miracles.

Dr. Carson also mentioned Matthew's one cyst has refilled with fluid. (Matthew had 3 cysts at the time of diagnosis). As it turns out, Dr. Carson said the location of this cyst is a good thing....it would actually enable him to have better access to the tumor! What a blessing in disguise.

I feel good about today's appointment. Thankful that we don't have to intervene at this time, thankful Matthew is doing so well (Dr. Carson said he can't believe how well Matthew has done these past 4 years with a brainstem tumor), thankful we are in such good hands with Dr. Carson and thankful for all the Lord has done for us.

So..we will hear back from Hopkins after the tumor board reviews Matthew's scans (either 2/8 or 2/15). If there has been tumor growth, we will schedule surgery for summer. If not, we will just schedule our routine MRI in 6 months. Of course if something drastic would happen with Matthew's health, we would have to do surgery sooner.

Today would have been my mom's 65th birthday. I know she is in Heaven...perhaps she is watching over Matthew.

As Dr. Carson left the room, he told us to keep saying our prayers. I want to thank you for all of your prayers--they are powerful and can work miracles. I don't think Matthew would be here today if it weren't for prayers being said on his behalf.

God bless all the parents traveling this road---many less fortunate than us tonight.

Andrea

Wednesday, February 2, 2005 5:55 PM CST

We're home!!!!

We left a little after 10:00 am and got home around 6:00 pm. It was a long day, but all went well.

Matthew was feeling nervous and anxious as we sat in the waiting room. He told me he'd rather have surgery than a MRI.

Around 12:30 the nurse gave Matthew a valium pill. Matthew was crying and tense.....upset thinking about getting an IV. He told me he hates NJ, pollution and smoke stacks---he's ready to move.

Around 1:00 the nurse told me that at Hopkins they do not fully sedate children over 50 lbs! I had no idea how this was going to work. Matthew needs an IV for the contrast. I wondered how he would he ever get an IV *and* lay still for the MRI without being asleep!

We went back to the MRI area and the IV tech looked at Matthew's hands. She showed Matthew the catheter, that it was rubbery and *not* sharp and pointy. Matthew agreed she could try to put it in his hand. The nurses and technicians were great and very nice to Matthew. They explained everything and made him feel like he had some control.

The nurse attempted an IV twice, but could not get it in Matthew's veins (he is a hard stick). Matthew told the nurse it's easier in the summer---because the heat makes his veins bigger. I wondered how he knew this!

Another nurse came over and finally got the IV in his hand.

Matthew was quite the comedian during this ordeal. He asked the nurse if people who have MRI's of their knees need contrast and she told him no. Matthew told her he knew why...because the knee is made of bones and the brain is soft tissue! The nurse told Matthew that your brain is like a sponge. Matthew then asked the nurse, "Animal or kitchen sponge?!" The nurse laughed and said probably kitchen sponge...she said the holes in a sea sponge are too big. Matthew then told her they're not holes, they're pores!!!!

At 2:30 Matthew finally was ready for his MRI! I am so proud of him. I stood at the end of the machine where he could see me in a mirror. He occasionally gave me a "thumbs up." The nurses and tech told Matthew he was as brave as a soldier. I am so proud of him. It was nice to just be able to walk out of the hospital and not wait another 3 hours for Matthew to wake up.

On the way home we stopped at Matthew's favorite restaurant, Bugaboo Creek, where Matthew had one of his favorites--spinach dip.

Well, we're back to Hopkins on Friday. I am expecting we will be told we will need to do something, but I am putting my trust in the Lord. I have faith that whatever happens will lead to Matthew's healing.

Thanks to my sister, Jen, for taking the day off from work to go with us----and to Jack for taking care of Emma and Luke.

Love you all-
Andrea

Monday, January 24, 2005 8:16 PM CST

UPDATE:

Matthew's MRI has been moved up to Wed., Feb. 2 with our appt. with Dr. Carson on Fri., Feb. 4.

Matthew fell three times the other day which got me extrememly worried. The one time he fell he was wearing too long sweat pants which could have made him fall. The other time was walking to the car and fell in the snow. I'm not sure if he hit a icy patch or just fell. He also fell in the bathroom....I'm not quite sure how that happened other than his leg is getting weak.

I talked to Dr. Carson's assistant and she moved up our appt.

Please keep us in your prayers. If we do need to intervene, I am hoping we can wait a little while. I would like to be able to finish my student teaching and have Matthew finish as much of the 5th grade as possible.

However, most of all I want Matthew to be safe and to be healed.



Matthew's next MRI is scheduled for February 16 with our trip to Hopkins on the 28th. I haven't told Matthew this yet, as I know he will worry about it every day. I want him to enjoy as many worry-free days as possible.

I started student teaching 2 weeks ago. It keeps me very busy, but I *love* it!! Yes, at the age of 39 I went back to grad school to get my degree and certification in Elementary Ed. At some point I might get my special ed. certification, as I *may* want to teach children who are in the hospital. We'll see.

We are enjoying the snow right now and so proud of our football team.

GO EAGLES!!!!!!!!!!!!!!

God bless,
Andrea

Friday, January 7, 2005 6:05 PM CST

CHICKEN POX UPDATE:

Well, both Matthew and Luke have the pox. Apparently you can still get it even if you've had the vaccine---it just is a milder case.

Besides being itchy, the boys are ok---definitely not as bad as Jack was last week. Jack was in bed for a week.

I am praying Emma remains safe and that I don't come down with the shingles.

I am praying that the virus somehow attacks Matthew's tumor and kills it----a cure is found and our prayers are answered.

Love from the Passarella "Pox" Household-
Andrea

Sunday, January 2, 2005 6:35 PM CST

Besides Jack being sick in bed with the chicken pox the week of Christmas, we had a nice holiday. My best gift, of course, is to be with my family and to see the joy and excitement on my childrens' faces Christmas morning.

We pray that the New Year brings you prosperity, good health, happiness, and God's peace and guidance in all you do.

God bless-
Andrea

Sunday, December 19, 2004 7:23 AM CST

1 CORINTHIANS 13
CHRISTMAS VERSION
AUTHOR UNKNOWN

If I decorate my house perfectly with plaid bows, strands of twinkling
lights and shiny balls, but do not show love to my family & others, I'm just
another decorator.

If I slave away in the kitchen, baking dozens of Christmas cookies,
preparing gourmet meals and arranging a beautifully adorned table at mealtime: but do
not show love to my family & others, I'm just another cook.

If I work at a soup kitchen carol in the nursing home and give all that I
have to charity; but do not show love to my family & others, it profits me
nothing.

If I trim the spruce with shimmering angels and crocheted snowflakes, attend
a myriad of holiday parties and sing in the choir's cantata but do not focus
on Christ, I have missed the point.

Love stops the cooking to hug the child. Love sets aside the decorating to
kiss the spouse.

Love is kind, though harried and tired.

Love doesn't envy another's home that has coordinated Christmas china and
table linens.

Love doesn't yell at the kids to get out of the way, but is thankful they
are there to be in the way.

Love doesn't give only to those who are able to give in return; but rejoices
in giving to those who can't.

Love bears all things, believes all things, hopes all things, endures all
things. Love never fails.

Video games will break, pearl necklaces will be lost, golf clubs will rust;

But giving the gift of love will endure.

Wishing you a joyous & meaningful Christmas!

Friday, December 10, 2004 9:57 AM CST

This Sunday, December 12, 2004, at 7:00 PM, is the Worldwide Candle Lighting Memorial, for all the children who have lost their lives, which coincides with National Children's Memorial Day.

Everyone is encouraged to light a candle in their homes, places of worship, wherever they may be, in remembrance of all the children who have passed away.

The Worldwide Candle Lighting is held every year on the second Sunday in December, at 7:00 PM in every time zone. The candle lighting starts at 7 PM just west of the International Date Line and proceeds west one hour later in the next time zone, eventually encompassing the world in a 24-hour wave of light. As candles burn down in one time zone, they are lighted in the next, creating a 24-
hour wave of light that encircles the globe. "…that their light may always shine."

Whether someone has suffered the personal loss of a child, brother or sister, or grandchild, or simply wants to show compassion to those who have, we encourage all to join with us in remembering those children who are no longer here.

Wednesday, December 1, 2004 8:02 PM CST

We had a nice weekend. We spent Thanksgiving Day with my two sisters, uncle, aunt and her husband. Certainly was strange, though, not having my mom or dad with us.

Friday we went to the Franklin Institute and saw the Titanic exhibit. It was incredible! If the exhibit ever comes to a museum near you, I strongly recommend seeing it. As you enter the exhibit you are given a boarding pass with a person's name who was on the Titanic (along with some facts about the person). I happened to be Madeline Astor (John Jacob Astor's 18 year-old pregnant wife). At the end of the exhibit you find out if your person lived or died. All of the women in our group (Emma, my sisters and myself) lived....the men (Jack, Matthew and Luke) all died. We ended the day by watching James Cameron's "Titanic" which really captivated Matthew (and Emma). Emma told me she liked Leonardo DiCaprio...her exact words were "he's cute!"

Saturday we went to the movies and saw "National Treasure."

It was a good family weekend.

Hope you all had a nice Thanksgiving.

God bless,
Andrea

Tuesday, November 23, 2004 2:37 PM CST

In recent years, Thanksgiving has become a special holiday of mine. I think it is the simplicity of Thanksgiving that I like. It is a day we get to gather with our loved ones and reflect upon all the things to be thankful for in our lives.

Thanksgiving has not been the same since my mom died, and this year will be hard since it is the first Thanksgiving without my dad.

A few months ago I was really missing my dad....thinking about how strange it'll be not to have him sitting at the head of the Thanksgiving table. It was always a treat cooking and baking for my dad as he loved to eat---and he especially liked the pecan pie I made on Thanksgiving.

Over the past few weeks I have been thinking a lot about Thanksgiving and, even though my parents are gone, I still have so much to be thankful for.

I am thankful for my loving, devoted husband, my two wonderful sisters and my three beautiful children.

I am thankful that Matthew is alive. As painful as it is to lose a parent, I can't imagine facing this Thanksgiving without my child.

I am thankful to God for always providing for Jack and myself, financially. I am thankful I've been able to stay home these past few years and take care of my family. I have really enjoyed being a full-time momma to Emma.

I am thankful for the loving home my parents brought me up in----I have so many childhood memories I will always cherish.

I am thankful for old friends, and new.

I am thankful for the gift of everlasting life.

Enjoy your families.

God bless,
Andrea

Monday, November 8, 2004 10:35 AM CST

I just spoke with Matthew's neurosurgeon, Dr. Carson. He suggested we wait until when (or if) Matthew becomes symptomatic to do another surgery. Dr. Carson said we shouldn't treat because of changes in the scan, but if symptoms arise. He also said he wouldn't want to rush into surgery if unnecessary as the scar tissue will make this surgery even more dangerous.

He spoke with the radiologist and they now feel radiation should be done after Matthew's next surgery---that this would provide us with more than 4 years before it could become symptomatic again.

Please pray that all of us make the best decision for Matthew.

God bless,
Andrea

Wednesday, November 3, 2004 12:03 AM CST

Here is Matthew's latest MRI report:

April-Sept. 2004 scans show NO GROWTH (Praise God)

July 2003-Sept. 2004 scans show SLIGHT GROWTH

The physician assistant told me the oncologist felt we should meet w/ all the drs. at Hopkins (radiologist, neuro-onc., etc.) to discuss treatment options we MAY want to use at a FUTURE date. In case Matthew's tumor would get to the point where we'd have to take action, we would know what we want to do.

She also said Dr. Carson is willing to do surgery. The radiologist felt this would be the best option...allowing Matthew to get through puberty w/out doing more damage to his growing brain. Without discussing this with anyone, I believe this is the option Jack and I would chose. Brain surgery is very risky, but I just have not read many articles on effective chemo treatments on the brain...especially the brainstem!

We are to go back in 6 months (March), unless we notice changes with Matthew. Of course I am now extra paranoid about Matthew's health and noticing any weakness in his right arm/hand.

Please continue to pray for Matthew's healing. I do believe the Lord can heal WITHOUT any of these interventions, and that is what I am praying. Please pray, also, for God to guide the researchers, scientists, surgeons to find a non-toxic treatment that would erradicate brain tumors, or a safe surgical procedure.

*********************************************************

Please remember the Fiveash family in your prayers as they just lost their beautiful daughter, Cheyenne, to a brain tumor this week. Her site is:
http://www3.caringbridge.org/tx/cheyenne5/
***********************************************************

God bless,
Andrea

Friday, September 24, 2004 6:33 AM CDT

Sorry for the delay in the update. Unfortunately, it's been a week since Matthew's appointment at Hopkins and we still don't know the results! This time we had a CD instead of the actual films and I guess that was a mistake. Dr. Carson was unable to read the CD, so now we have to have the films sent down to him for his review. Dr. Carson did say, however, that since Matthew's tumor has remained stable for the past 3 1/2 years, he feels it most likely has not grown. It was of comfort to hear him say that, but we'll be able to rest better once we know for certain.

Last Saturday was our walk. I was really hoping the hurricane would bypass our area, however, at 9:45 am (just as I was setting up), it started to pour. I was thinking of packing up when within 3 minutes 10 people signed up to walk. They all said they didn't mind walking in the rain....so we went on! We had about 90 people walk--which I guess wasn't bad considering the lousy weather. Amazingly, it stopped raining the moment the people started walking. Once the last person returned to the pavilion, it started to pour again! So, we did have some help from above for which I'm thankful.

The 2nd Annual Matthew's Miles raised $19,000 for brain tumor research for a total of $39,000 for the past two years.

Well, I need to get the kids up and read for school.

Thanks for stopping by!
Andrea

Wednesday, September 8, 2004 6:52 PM CDT

Matthew has his MRI tomorrow (9/9) at 11:00 am. Matthew is definitely *not* looking forward to it---and he'll miss the second day of school. Please keep him in your thoughts and prayers tomorrow. Matthew is NOT a fan of needles and it is always a rough day.

We will find out the results of this MRI at Johns Hopkins next week, on FRI, SEPT 17 which is the day before the 2nd Annual Matthew's Miles Walkathon. We hope (and pray) that we have continued good or great news to report to the walkers on the Saturday morning of the walk, SEPT 18th.

Keep sending your prayers, good thoughts, and positive energy our way for tomorrow's MRI and for next FRI's MRI review.

God bless,
Andrea

Wednesday, September 1, 2004 8:41 AM CDT

Please say prayers for my friend, Nancy, and her family. Nancy has been battling cancer since the spring and today she is undergoing surgery. Because of the cancer Nancy has to have her leg amputated.

Please pray for a successful surgery, a quick recovery, and peace for her and her family. Nancy has two small boys, ages 6 and 3, who need their mommy.

Thanks.

Andrea

Sunday, August 29, 2004 12:48 AM CDT

Thanks for stopping by Matthew's new web page! Jack is the pc expert and is the one responsible for posting the updates on our other web pages. I thought having a caringbridge site would allow *me* to update a site and post pictures of Matthew and how we are doing.

We've been having a nice, relaxing summer. The kids and I enjoyed a week at the Jersey shore with my sisters. Jack, the kids and I vacationed for a few days at Snowshoe Mt. Resort which is located in the mountains of West Virginia. We had a great time and look forward to going back next summer!

My classes start tomorrow. I will be taking 3 courses this fall and am scheduled to student teach this spring! Matthew and Luke head back to school on the 8th. I know it will be a hard adjustment to get back into the "school" schedule!

Thanks for stopping by!

Andrea

Saturday, August 28, 2004 7:44 PM CDT

This page has just been created. Please check back for additional updates.

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----End of History----