Matthew's Story: In Pictures and Words

About Matthew & Matthew's Miles

My son Matthew was diagnosed with an inoperable brain stem tumor in 2001 at the age of seven. To date he's had four brain surgeries—3 in 2005 alone—and six weeks of radiation therapy, completed April 3, 2006. Read his story here and find out why my wife and I started Matthew's Miles to raise money for pediatric brain tumor research. To date, with the help of hundreds of you, we've raised over $109,000 for pediatric brain tumor research by the American Brain Tumor Association and the Children's Cancer Foundation. More at: Matthew Updates & Matthew's Miles Yahoo Group (Announcement Only).

PLEASE NOTE that Matthew's situation has changed since the text updates you'll find below these pictures. (I kept the updates here as a record of what's happened so far.) For years, Matthew was in a wait-and-see mode, with regular MRIs. Since then, there has been some growth of his remnant (post-op) tumor and he is currently scheduled for another brain surgery (this time probably followed by radiation therapy) on June 21, 2005. Please keep Matthew, and our family in your thoughts and prayers.

My (then) seven-year-old son Matthew was diagnosed with an inoperable brain tumor 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 area. During a biopsy, the neurosurgeon at Johns Hopkins removed more than half of the tumor. The rest remains, inoperable because of the critical location in which it lurks.

Below is a photo account (with descriptions above or beside the photos) of Matthew's ordeal and his progress... and a thank you to those who have kept Matthew in your thoughts and prayers. (More pictures added April 17, 2001... and more pictures means slower download, but I think pictures tell an important part of Matthew's story, so please be patient.)

(1) Matthew (post-diagnosis, but pre-op) poses with Emma Faith during a sponge bath at home. We later learned that Emma had a mild case of jaundice which cleared up in a week or so. (Emma may be only 1 day old in this photo!)

(2) Another pre-op photo of Matthew and Emma. Posted by Matthew's request, and (3) Matthew holding Emma, with Luke watching. This is first day home from the hospital for Emma and Matthew.

(4) The weary family is home from both hospitals, Matthew's and Emma's. Luke chose not to be in this photo.

 

(5) I believe this photo is pre-op, but it shows clearly the "moon face" caused by the heavy doses of steroids Matthew received in order to keep the swelling down in his brain. The original diagnosis presumed a very aggressive tumor, but the neurosurgeons at Johns Hopkins discovered Matthew actually has a very slow growing tumor. The steroids did restore some of Matthew's strength, but the doses he was taking were probably too high and taken too soon.

 

(6) Here you can see Matthew's entire suture line almost a week after his brain surgery. Fortunately for Matthew, he could never really see how scary this looked to the rest of us. The bottom of the suture line is where Matthew began to leak brain fluid a week after surgery. This complication sent us back to Johns Hopkins for a ten day stay.

We received "half a miracle" when the surgeons discovered Matthew had a very slow growing tumor instead of the aggressive tumor first diagnosed, basically the best worst news. Now we pray for the other half of that miracle, for Matthew's continued recovery and for the tumor to remain dormant for many years to come. (See Matthew Update page; Matthew is scheduled for another surgery in June.)

(7) On Valentine's Day, Matthew gave his mother a special gift and stood up, with a little help, but supporting his own weight. It would be a couple weeks before he would take assisted steps and eventually walk on his own for short distances. Notice the way he holds his right arm and hand. At this time he still had significant weakness in that limb.

 

 

(8) This is about a month after surgery, after the brain fluid leak had been stopped and after the nylon stitches were removed. At this point, he had a line of scabs and the bottom still looks the most raw.

 

 

 

(9) Matthew begins to enjoy the everyday things in life, namely Nintendo 64. At this point, he was playing one game only, Pokemon Stadium, because he could only use his left hand to play and P.S. accommodated one-handed game play and, (10) March 10, 2001: Matthew, Luke and Emma all attend my Angel: Avatar launch event at Between Books in Claymont, DE. Matthew had begun to walk with support. Note his right hand was still weak and inflexible at this time. Since then he's regained strength and flexibility in the hand, but he still needs more time with rehab.

(11) This photo, taken in April, shows Matthew's suture line clear of scabs and just looking red. This is close to how it looks now, although his hair has re-grown around the area more and covers the scar.

 

(12) Matthew liked this picture of him holding Emma.

 

 

(13) At one time we worried that Matthew wouldn't be able to walk in time to enjoy an Easter egg hunt. Our fears were groundless. Here Matthew has collected an egg. (Also, you can see one of the scars on his left foot, from his club foot surgery on December 28, 2000.) And (14) Double feat! Matthew is standing on his own AND holding Emma in his arms.

(15) Tag-team outdoor therapy session with Dawn (physical therapist) and Dave (occupational therapist). A little hard to see, but Matthew's face is starting to lose the "moon face" roundness of the heavy steroid days.

 

 

(16) Matthew (standing tall) with Emma and Luke. Yes, Emma is getting so big.

(17) Matthew gives Luke a "Happy 4th Birthday" kiss in front of Luke's dinosaur cake. (18) Birthday boy Luke gives Matthew a hug.

(19) Yes, the truth can be revealed at last. Matthew and Luke hatched from dinosaur eggs... we found them in the Camden (NJ) Aquarium gardens, and (20) Matt (and Luke) help feed Emma during her first 'real' meal.

(21) The "karate kids" demonstrate some of their new moves. The rehab place recommended karate for Matthew as a way to increase his strength, balance and flexibility. Luke had been talking about taking karate lessons for weeks!

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Progress Updates

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 remain dormant so that Matthew will not have to undergo radiation therapy or chemotherapy.

Sept 19, 2001 update: Today is Matthew's 8th birthday! Yesterday we took Matthew's most recent MRI scans (Sept 10, 2001) to Johns Hopkins for review by his brain surgeon. We learned that his tumor has continued to shrink! While the decrease isn't as dramatic this time (maybe 20%, 25% or 30%) as it was three months ago (50%), it was definitely a noticeable change. A vast difference from the size of the tumor from the time of his biopsy and partial removal. The surgeon called the change "unbelievable" and again asked if Matthew was taking any special herbal supplements, something his other patients might want to start taking. We told him no supplements, just that we've been praying every day. Along with a lot of other people out there praying for Matthew. His next MRI is in December. We're hoping for the best possible Christmas present!

July 5 update notes: On July 3, the medical supply company that had provided Matthew's wheelchair came and took it away - at our request. Matthew was unable to walk (first due to foot surgery in December, then because of weakness in his right side after brain surgery in February) for about three months, but even after he started walking again we kept the wheelchair because his stamina only allowed him to walk short distances. We hadn't used the chair in weeks, so we asked them to pick it up.

Also, Matthew's outpatient rehab therapist says he's amazed at Matthew's continued progress. When he first saw Matthew, the therapist thought he might need braces on his legs to walk correctly, but no more. Matthew's right leg, weakened by the tumor and the surgery is now stronger than his left, which is as it should be since his left foot has required two rounds of reconstructive surgery since he was born with a club foot. Stretching exercises should make him more limber, improve his posture, etc.

Next MRI is scheduled for early September...

June 21, 2001 update: Matthew's latest MRI was June 5, 2001. We took the films us to Johns Hopkins on June 19 to be reviewed by Matthew's surgeon. While we were hoping the mass would continue to stay dormant (i.e., not grow), we were stunned and surprised by the actual results from the latest scan. The surgeon told us we would "be amazed" by the film and we were. The tumor has DECREASED in mass, substantially. In some comparisons (to his previous scan) the relative diameter of the mass decreased from the size of a quarter to a nickel. In others, to the size of a dime. Even better, in some views of Matthew's brain, the mass doesn't show at all in locations where it existed just three months ago. Areas of pressure and compression are now relieved. (Understand that the scans take 'slice' views of the brain, top to bottom, front to back to give a three-dimensional view of the mass.)

We've been praying for a miracle since Matthew's biopsy revealed a less aggressive type of tumor than first predicted. Now we see evidence of amazing recovery right before our eyes. The surgeon said that "the scans don't lie." (The surgeon even asked us if Matthew was taking any drugs or supplements that they (the hospital) should know about! We told him all we've been doing is praying. And we know a lot of people out there have been praying with us for Matthew.) The tumor is smaller, but it's still there. So we will continue to pray that the mass shrinks even more... maybe the next scan, in three or six months will reveal NO evidence of the mass. That would be truly miraculous!

April 12, 2001: We saw endocrinologists at Johns Hopkins Hospital today and they told us that Matthew has been very lucky, post-op from the endocrinologist's standpoint. Many children have to go to endocrinology post-op because of illness or pituitary gland damage. Matthew's appointment was a precautionary one. They told us that often during brain surgery, the pituitary gland is damaged and its functions impaired, resulting in frequent illness post-op, including fever and vomiting. Damage to the gland can affect the secretion of growth and other hormones, as well as triggering diabetes. Sometimes hormone supplements have to be taken for life after surgery because the body can no longer produce them. They don't usually supplement growth hormones for a year after surgery because growth hormones can stimulate the growth of the remnant tumor! Fortunately, Matthew has exhibited no overt signs of pituitary damage. He needs to have blood work done to determine if his body is producing steroids on its own again.

Steroid changes update: Before Matthew started taking steroids, he weighed 52 pounds. By the time he was taken off of steroids, two and a half months later, he had gained about 18 pounds, putting him around 70 pounds. Today he weighed 66.8 pounds. So he's lost some weight already and his face is no longer as puffy and swollen as it had been.

April 11, 2001: Matthew began to run on his own, for short distances. Also, he climbed the stairs, upright, using only the railing for support. Two big developments in one day.

Again, thank you all for praying with us.

Read MORE about Matthew's story on the Matthew Update Page...

 

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