Malachi Ray

Malachi starts his first full day at the IWK Health Centre with a CT Scan of his chest, specifically the lungs.  If Malachi’s tumour is indeed a “malignant process”, it is critical to determine whether or not anything has spread to the lungs.  Results will be available later today.

Malachi met his physiotherapy, Kyleigh.  She brought him a set of crutches and trained him on using them.  He also spent some time in the “life sciences room”, which is essentially a game room staffed with a combination of “child life specialists” (staff whose job is to befriend the kids) and volunteers.  He also met a therapy dog, who comes in from time to time to bring a smile to the kids’ faces.

We received some test results today.  Malachi’s blood tests came back normal, which is both good and bad.  It partly rules out some scary options, but it also rules out the possibility of the problem in his bone being an infection.  That leaves a “malignant process” as the only real explanation for the tumour in his leg.

The big news of the day:  The CT Scan of his lungs showed no sign of any abnormalities.  That means that if the tumour is malignant, it is currently localized to the leg only, which drastically increases the treatment options and probability of success.

Malachi began feeling discouraged about his mobility today, realizing that he has several months ahead of him during which he’ll be limited to a wheelchair or crutches.  He has also been in lots of pain, but thankfully the hospital staff are great at managing pain with medications.

On a good note, however, Malachi had a good long chat with his cousin Ryan Robichaud.  That cheered him up a lot.

Ben

We got the call on Tuesday, March 17 2009.  Malachi has a 9:15 AM appointment tomorrow, March 18, at the IWK Health Centre (formerly “IWK Children’s Hospital”) in Halifax.

Marni and I drove to Moncton on Tuesday afternoon, picked up Malachi and Jocelyn, and then we made our way to Halifax together.  Malachi had quite a bit of leg pain during our trip, and at one point it was heart-wrenching sobbing while we waited for the Tylenol and liquid codeine to kick in.  We arrived in Halifax late on Tuesday.  The Kirchner family, who was visiting the Rays in Fredericton at the time, gave us keys to their home where we all spent that night.  Malachi had a good night’s sleep, with no leg pain and lots of hugs and kisses from all three parents before bed.

In the morning, we arrived at the IWK for our 9:15 appointment and were sent to the Nuclear Medecine department for the first set of tests.  They started with two bone scans, one of the legs only, and then one of his full body.  These were passive tests, where radioactive material was bonded with another material that the body sends to the bones.  Two large panels, one above and one below, picked up the radiation from the material that was now inside Malachi’s bones.  We could see his skeleton glowing on the monitors above his head.  It was very interesting.  We could also clearly see the tumour in his leg, which appeared much bigger than we had thought. 

Malachi then had an MRI, which was a long, noisy test.  The technicians gave him headphones and pumped Top 40 tunes into his head while I sat beside him, giving him the occasional thumbs up so that he’d know the machine wasn’t going to blow up.  (Because it certainly sounded like it wanted to!)

Just when we were waiting to meet with the doctors and (we thought) get a diagnosis, we were sent to the X-Ray department.  The X-Rays sent down from Moncton didn’t quite show everything, so we took a few more.

Finally, the doctor (Dr. Jason Howard) and a resident (Dr. Loewan, aka “Dr. Mike”) met with us late in the afternoon after having a look at Malachi’s tests.  Our nerves were raw, and we were all very anxious.  We were all hoping to hear the word “benign”, but unfortunately Dr. Howard told us we still don’t have a diagnosis yet.

Dr. Howard spoke very clearly and calmly, addressing Malachi directly.  In his words, “It’s your body, and it’s your tumour.”  Dr. Howard told him that he doesn’t know what the bump is yet, but that he is very concerned about it, and that they need to go in and take a piece of it out to find out exactly what the bump is made out of.

When pressed for his opinion, Dr. Howard suggested that he feels strongly that the tumour is “a malignant process”, but that there’s a very small chance that it is some sort of infection.

A biopsy was tentatively scheduled for the end of the week, possibly the weekend at the latest.

A tumour in a bone will usually weaken the bone. As a result, Dr. Howard instructs Malachi to stop putting weight on his left leg until the tumour can be removed and the leg repaired.  He will be restricted to the use of a wheelchair, crutches, and a walker until the eventual surgery.

Malachi was then admitted into the IWK, Room 782 of the “Link” building, a new facility.  This facility has only private rooms, with quite a bit of space, a private bathroom, a day bed for a parent to sleep, and a flat screen TV and DVD player.  Room service is also available for all patients, with a great selection of food from a rather complete menu.

Before bed, a nurse drew some blood for testing that will help the doctors narrow down the possibilities get us a bit closer to a diagnosis.

And now we wait.

Ben

Malachi’s mother Jocelyn took him to the emergency room shortly before 9:00 AM on Thursday, March 12, 2009.  They were seen rather quickly.

Malachi had an X-Ray and a CT Scan of his left thigh bone (femur) and knee.  The doctor indicated to Jocelyn that although he wasn’t sure what it was, there was “definitely something”, and that Malachi should be referred to the IWK Health Centre (formerly the “IWK Children’s Hospital” in Halifax, Nova Scotia.  He suggested that Malachi would be seen there within a week.

Although we all knew that Malachi would ultimately be OK, each of us went through a process where we eventually realized that this could be something serious.  The next few days were very difficult – all we could do is keep a brave face for Malachi and each other, and try not to panic about any worst-case scenarios.

Thankfully we only had to wait a few days for the call from the IWK.

And this is where the big part of Malachi’s journey begins.

Ben

The pain in Malachi’s left leg wasn’t much of an issue during January and most of February 2009.  It wasn’t until late February when Malachi started complaining of the pain again.

During the week of Feb 23, 2009 (the week before March break), the pain in Malachi’s left leg came back again, and so did the limp.

Malachi spent March Break (week of March 2, 2009) with me and Marni (Dad/Ben & step-mom) in Fredericton.  We all had a great visit, but the pain seemed to be getting worse.  Marni added epsom salts to his bath water, which really seemed to offer Malachi some relief.  (He really likes her epsom salt baths!) 

It was hard watching him in pain.  On Sunday Malachi and I were sitting in Church together.  I heard a sniffle, and I looked over to see tears running down his cheeks and he was holding his leg.  Even sitting still, his leg pain was enough to bring him to tears.  That broke my heart.

His leg and knee pain continued.  When he returned home to Moncton after March Break, the pain worsened.  Epsom salt baths didn’t seem to help anymore (although Marni wasn’t there to give him the special bath experience).  He missed some more school because of the pain.

On Thursday, March 12, 2009, his mother Jocelyn took him to the hospital.  And thank goodness she did.

Ben

In the Fall of 2008, Malachi began experiencing pain in his left leg and knee.  At first it was a dull pain, coming and going from day to day.  Then sometime around October 2008, he began to limp, putting as little weight on the leg as possible because of the pain.

As he is a tall, growing boy, and the pain was in his lower femur (thigh bone), a common place for kids to have growing pains, it was easy to assume  that this was a growing pain of some sort.  And that’s what most of us thought, at least at first.

When it got to the point where the pain caused him to miss some school, his mother Jocelyn brought him to the emergency room at the Moncton hospital.  They checked him out, took an X-Ray, and it appeared as though nothing was wrong.  He was sent home and most of us returned to the assumption that it was growing pains.

Shortly after, the pain went away.  Thoughout the Fall and Christmas holidays, Malachi had occasional leg pain, but it usually went away within a day.  He occasionally limped, but when asked about the pain he said it only hurt a little.

Ben