Matthew's Story: In Pictures and Words (2 of 2)
For a long time after Matthew's surgery, we were in a wait-and-see mode, with regular MRIs and no other treatment on his remnant tumor. Since then, the doctors have noticed some growth (when comparing current scans to scans several 'generations' back) and have recommended a 2ND BRAIN SURGERY. This time Matthew will probably have radiation therapy after surgery.
Unlike the first Matthew page, which progresses chronilogically from pre-op to surgery to post-op rehab, this page has the most recent updates (and photos) listed first, so that those familiar with Matthew's story can find the latest info fast.
If you are new to Matthew's story, read the beginning of Matthew's Story.
Andrea is posting her latest Matthew updates at Matthew's Caring Bridge Page.
The Latest News Begins Here
Matthew, Luke and Emma (March 2005): Matthew was chosen as the South Jersey (regional) poster child for the Children's Cancer Foundation Triple Winner fundraiser sponsored by Giant Foods. The photographers (Kurt and Helena Graenicher) took this group photo so that Matthew's siblings would feel included.
QUICK BACKGROUND INFO: My ten-year-old (as of 9-19-2003) son Matthew was diagnosed with an inoperable brain tumor (at age seven) on January 12, 2001, the same day we welcomed Emma Faith, our third child (and first daughter) into our lives. The brain tumor is located in his brain stem. During a biopsy, the neurosurgeon at Johns Hopkins removed more than half of the tumor. In two follow-up MRIs we saw the tumor shrink. Several MRIs showed no change. What remains of the tumor is considered inoperable because of the critical location of the brain in which it lurks. We are currently on a 6-month MRI cycle.
September 6, 2005: I'm posting these pre- and post-op photos late.
The first is Matthew enjoying a humorous moment while wearing his fiducials, i.e., prepped for imaging during surgery. We visited the National Aquarium in Baltimore.
The next is Matthew in his hospital bed at Johns Hopkins, head wrapped. The third shows the extent of his suture scar.
Post-op, Emma at his bedside; Matthew couldn't wait to get out of the hosptial.
It's hard to believe Matthew was in the hospital for less than a week after his second brain surgery. (We returned home on the Saturday after his Tuesday surgery.) And this time, fortunately, we did not have to return to Hopkins due to any complications.
Dr. Carson had told us (before we saw it) that the incision was not as long as the one for his first surgery, but it seems awfully long to me.
Check Matthew's first page and see if you can tell a difference.
Below are two photos of Matthew's suture line, one before the sutures were removed, the other after.
July 17, 2005: We received official photos from the Orioles for Matthew's bat boy experience. Both photos are copyight 2005 by Jerry Wachter Photography. In this first one, you see the jumbo screen at Camden Yards announcing Matthew's honorary bat boy status.
This next shot is Matthew and Luke posing with the Orioles' mascot.
JUNE 13, 2005: Matthew is the honorary bat boy for the Baltimore Orioles, just 8 days before his scheduled second brain surgery at Johns Hopkins.
Javy Lopez (catcher), Sidney Ponson (pitcher), Daniel Cabrera (pitcher) and bullpen coach (Elrod Hendricks) signed Matthew's official baseball and/or T-shirt (gifts from the Orioles organization).
More pictures (uncompressed) at the Caring Bridge Site Andrea updates:
FEB 2005 UPDATE: When Matthew's current MRIs are compared against MRIs several cycles back, the doctors at Johns Hopkins DO see change. A fluid-filled cyst has also reappeared. Because of these changes, Matthew is scheduled for surgery after the school year, probably to be followed by radiation.
SURGERY SCHEDULED FOR MATTHEW on June 21, 2005: Surgery at Johns Hopkins. Rehab is expected to last 6 to 8 weeks. Matthew may also undergo radiation therapy (locally) following surgery. Our hope is that maybe THIS time the doctor(s) will be able to get out more or even all of the remaining tumor (and the new cyst), or that what remains will be destroyed by follow-up radiation therapy. We are hoping that the area requiring surgery is not masked by scar tissue.
FEB 5, 2005 - UPDATE - E-MAIL LETTER FROM ANDREA
(post MRI results meeting)
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.
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--
FEB 2, 2005 - UPDATE - E-MAIL LETTER FROM ANDREA
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-
Below is a (brief) Flash Video of a Matthew's performance as one of Jupiter's moons in a school play.
SEPT 18, 2004: The 2nd Annual Matthew's Miles Walkathon & Auction is today. We're hoping we don't get rained out. As of right now, the forecast for Saturday (today) calls for Rain and Storms. We need a few hours, then the storms can come. Rain, rain, go away...
SEPT 17, 2004: MRI REVIEW: We're back from Johns Hopkins. Matthew passed all the physical " tests" but the new-fangled MRI scans on CD were a flop. Too messy to read, so we have to wait for the traditional scans to arrive. My heart nearly stopped, though, when the doctor came into the exam room after looking at the CD images and said, "the scans are terrible." After time stopped, he clarified: "they're too messy to read." His assistant said, "Yes, you can tell they're scans of a brain but that's about it." He went on to say that if the real film (not the CD images) showed that the remaining tumor is stable (as it has been for a while), that Matthew could go to an annual schedule instead of every six months. When he realized that we're coming up on four years (next FEB) since Matthew's brain surgery, he mentioned that five years was the magic number for his type of tumor. He said, though it has been stable for a while, we need to remain vigilant for the first five years. I'm hoping that means that after five years, we'll have even wider gaps between MRIs.
AUG 2004: Matthew, Luke & Emma at Wildwood Crest
March 15, 2004: (MRI Date: Feb 26, 2004): After a much longer than usual wait, we received the results of Matthew's latest MRI. The tumor has not grown. Matthew continues on wait-and-see mode with no treatment. There is discrepancy about the period of his next MRI. We receive a phone call saying the next MRI should be in 6 months, but we receive a letter saying one year. As much as we'd love to have a one year gap between MRIs, I'm not sure the docs at Hopkins are ready to give us that much time yet. We're still waiting for confirmation on either 6 months or 12.
July 29, 2003 Update: Another long day's wait and drive to/from Johns Hopkins. Both the physician's assistant and Dr. Ben Carson said that Matthew looked great and is doing great - they run through a gamut of physical and neurological tests/responses. I don't think they had the prior scans available, at least they didn't show them to us - prior or current - but Dr. Carson said the current MRI scans looked stable. Anyway, for Matthew, it looks like good news again (if not great news - we're still praying that someday the rest of Matthew's brain tumor will wither away), which means we'll have another six months of quasi-normalcy before the next MRI. Hard to believe it's been two and a half years since Matthew's surgery.
October 1, 2003: Matthew poses with our new dog, Sadie, a purebred golden retriever, hours after we brought her home. (So far Patches, our cat, is curious but not frightened by the new addition to the household.)
Courier Post Article (9-18-2003): http://www.southjerseynews.com/communities/gl091803d.htm
Philadelphia Inquirer Article (9-14-2003) On Matthew's Miles
Summer camaraderie and a shared ice cream cone.
Matthew and Luke pose atop the shoveled snow mound after the great snow storm of February 17, 2003. From this angle, it looks like one small leap to make it to the roof of our house.
JAN 21, 2003 Update: Matthew had his most recent MRI on JAN 6. The JAN 13 visit to review the MRI at Johns Hopkins should have provided the results...but Matthew's neurosurgeon had left, the outer and inner waiting rooms were really backed up (we had to wait three hours this time instead of an hour) and when the doctor (Dr. Carson) finally reviewed the MRI, he didn't have the prior MRI scans on-hand to make a comparison. Based upon the doctor's memory of Matthew's last scans, he gave us a preliminary good report. We would have to wait an additional week for the board to meet. On Tuesday, JAN 21, they would make the actual comparison of old scans to new, looking for any changes. The week passed slowly; Tuesday came with a flare-up of anxiety as we waited for the call... After the meeting, the physician's assistant phoned to tell us the scans looked great, no change. We always pray for shrinkage first, no growth as a "second best" result. And that's what we got. With no change, i.e., no growth, since the six month old MRI (and the scans before that, etc.), Matthew is cleared for another six months of wait-and-see with no treatments. So we get another six months of time, a chunk of quasi-normalcy to live our lives hospital-free. Another six months for Matthew to live life as a normal nine-year-old boy. Thank you all for your prayers and good thoughts. Matthew's next MRI will be in July 2003.
DEC 3, 2002: Matthew (r) and Luke (l) said goodbye to Dr. Avellino (Matthew's neurosurgeon), who is leaving Johns Hopkins Hospital at the end of 2002. Dr. Avellino will relocate to Washington State, and work out of the University of Washington School of Medicine. (I thank Dr. Avellino, among other doctors involved in Matthew's diagnosis, care and treatment, on the "acknowledgments" page of Wither's Rain.)
Matthew (red ninja), Emma (giraffe) and Luke (skeleton) dressed for Halloween 2002.
Matthew with his new pet, Max, the guinea pig. We adopted an abandoned cat (now called Patches) the same day. And Matthew's 3rd Grade Photo.
September 19, 2002: We are so happy to celebrate Matthew's 9th birthday today! We had his party on 9/15, but his actual birthday is today. He took Pikachu cupcakes into school for his classmates and teachers. Below are some pictures from the party.
Andrea, Emma, Matthew and Luke pose with the Elekid (a Pokemon creature) cake that Andrea decorated. Next to that picture is a close-up of the cake.
Here's Matthew in the middle of blowing out his candles.
August 2002: It's since been confirmed: Matthew will be on a six month waiting period now before his next MRI, scheduled for early January 2003.
Luke, Emma and Matthew outside their hotel at Wildwood Crest, NJ in July 2002.
Matthew holding a football (next to Emma) at Wildwood Crest, NJ in July 2002. Matthew had cut his foot on broken glass and wasn't allowed to get it wet for the first few days - you can see the bandage here.
July 16, 2002: We're back from Johns Hopkins. Again, we received good but not great news. Meaning, the tumor hasn't grown, but it also hasn't shrunk. Since Matthew's surgery, his follow-up MRIs have shown: no growth; 60% shrinkage; 20% shrinkage; no growth; no growth; and now, once again, no growth.
Matthew did well on all the physical tests, walking on toes, then heels, shrugging, touching his nose, tracking with his eyes, etc. The surgeon meets with the board next TUESDAY. He's going to suggest again (maybe more strongly this time) that we go to 6 months for the next MRI instead of 4 months. Six months would take us past Christmas and into the new year. Four months would mean another MRI before Thanksgiving. Obviously we're hoping the consensus will be for six months.
Thanks again, everyone, for being with us in spirit, and for sending all those positive vibes and/or prayers our way.
PICTURE GALLERY TWO
Matthew as one of the moons of Jupiter in his school play, "Vacation on Mars", June 2002.
Luke blows out the candles on his 5th birthday cake as Matthew looks on with his Green Goblin action figure during the Spiderman themed party. Party date: May 26, 2002; Luke's actual birthday: May 22.
Matthew, Luke and Emma with Andrea on Mother's Day, May 12, 2002.
Matthew, Luke and Emma on Easter Sunday, March 31, 2002.
Mar 2002: Matthew's March MRI again showed no change. We were moved from a three-month MRI schedule to a four-month. We were hoping for a six-month schedule, but the oncologist only wants to bump us to four months, not six.
Dec 2001: Matthew's December MRI again showed no growth in the remaining brain tumor.
Sept 2001: Matthew's September MRI, i.e., brain scan revealed that the tumor has continued to shrink since June's MRI, which showed a 50% decrease in size. In September's MRI, the decrease was another 20% to 30%.
Pre-Christmas [12-4-2001] Matthew, Luke and Emma: Ready for Christmas 2001.
Matt at Wildwood Crest, NJ; Matt and Luke at our local pool.
Matt and Luke - Cape May and Ready for the First Day of School.
Birthday Parties: Andrea's; Matthew's with Eagles Football Cake.
On Matthew's Birthday,
My Message to Those Who Have Given Us Support:
Today, on Matthew's 8th birthday, I just wanted to send a note to thank all of you for sending kind and encouraging words our way, in addition to keeping Matthew in your thoughts and prayers these past several months. You have given us immeasurable support.
Today is such a special day for us, because it's a day we thought we might never see. When Matthew was diagnosed with this brain stem tumor on January 12, 2001 (the same day Emma Passarella entered our lives), we were told Matthew's life expectancy was six to nine months and he was unlikely to respond to any treatment. We were faced with the realization that he might not live to see his 8th birthday (over eight months away at that time) and that even if he were alive, his quality of life might be horrible.
Along the way, we've had to agonize through seven hours of brain surgery, watched him lose his ability to walk for three months, lose all strength in his right arm and hand, along with weakness in his right leg... we've seen him leaking brain fluid from the bottom of sutures that wouldn't heal, endure two extended hospital stays, and experience a radical personality shift from steroids, drugs which also caused him to gain 18 pounds in several weeks... however, we've also learned from the biopsy and resection (with a 50% removal) that his tumor wasn't the aggressive type first feared, we've watched him learn to walk again (and swim and take karate lessons) and use both arms equally, lately we've witnessed -- via MRI film -- his tumor shrink 50% and probably another 20% in these last three months. He's back to his old self and has lost 10 of the pounds he gained on steroids. Today he took in a tray of football-themed cupcakes to celebrate his birthday with his classmates. All of that has given us hope that Matthew will have a normal life and will someday be free of this tumor. Our prayers and your support have given us strength through the dark days -- and may the darkest already be behind us!
But most of all, I want to say, "Happy Birthday, Matthew!"
Your Prayers For Us
Many of you have kept Matthew in your thoughts and prayers and you have given us hope, strength and faith. For this, we thank you. Currently, we are in a wait-and-see mode. We hope and pray that the tumor will continue to shrink or remain dormant so that Matthew will not have to undergo radiation therapy or chemotherapy.
Again, thank you all for praying with us.
The latest updates are on Matthew's Caring Bridge Page.