Update : January 9, 2004

It has been a long time since the last update. We have been so busy the last 6 months!

Since our last update Jennifer had another round of tests. Everything came back fine. We also met with ENT who advised us that she should have her Tonsils and Adenoids removed as she was having many throat infections. She also snores very loudly to the point she would wake up quite often. Yet another surgery.

She actually had it done this week. The surgery went fine, but as usual she got very sick from the anesthetic. This time the doctor ensured she could stay in the hospital as long as she needed. This would allow her to stay on an IV and receive fluids until the nausea passed. After 3 days she was sprung free. The care has been very good at Sick Kids Hospital, it just seemed like this time it was unusually amazing.

Jennifer is enjoying the fact that she can eat ice cream any time she wants. Just wish she would take the pain medicine as well!

Next thing on the hit parade is the dentist. Yes, Hemihypertrophy has caused problems with the alignment of her teeth (right side mostly). Braces will be the next fun thing to deal with.

As for us, we have been busy putting our house up for sale, buying a new house, selling our house sooner than we wanted to, moving into a rental and anxiously waiting for a mound of dirt to turn into a new house. Already got the dreaded letter saying our house will be delayed a couple of months.

Update : July 13th

Jennifer has her 5 month round of tests on Wednesday. Now that she is 3.5 years off treatment there is not as much anxiety going into these visits. Still, there is a little bit of nervousness. When we hear of other Wilm's kids having a reoccurrence years later you still kind of worry.

We just came back from Camp Trillium a week ago and had a blast. The kids did the usual swimming, fishing, archery, BB guns, arts & crafts and tons of other activities. The parents did the high ropes, yak boarding (kind of like a kayak) and even had a prom night. We were picked up by the camp limo (farmers wagon). AS usual the counselors were amazing and activities were fun.

Will let you know how the tests went.

Update : June 10th

Good news!!!!

The MRI showed that there is no immediate need for surgery. Although the spinal column is somewhat compressed,there is still spinal fluid around the the cord itself. The issue of the bone structure is still a concern, but is not bad enough to require a fix. They don't want to see us until next year.

Jennifer will still need to limit certain activities that put her a greater risk. No amusement parks, gynastics or skate boarding.

Next month we have ENT (ear, nose and throat) and her regular battery of tests to confirm the cancer is in remission. Updates to follow.

NOTE: We have a new guestbook. The old company wanted money for the free service we had for the last couple of years. If you have a moment, please send Jennifer a message.

Update : May 29th

Spoke too soon.... Jennifer starting having numbness in her hand. We noticed her shaking her hands and asked why she was doing that. She said her hand felt like it was tingling and the only way to make it go away was to shake them. She also was complaining about pain in her leg without and injury. Both are signs of of the spinal stenosis.

Once we told the Neurologist, we had a MRI appointment within days. We arrived at 7am, went through the SARS screening before we could go anywhere in the hospital and was escorted to the MRI floor. Once there we went through the usual requests for the IV team. As usual they said "We do this all the time". Both hands later and multiple tries I finally had to suggest using her foot as that was where they had to do it one other time. Bingo it worked.

The MRI itself went well and for once she did not get sick after getting a general anesthetic. Apparently they use a different type when giving an MRI as there is no pain management required and she is not under as deeply.

We now have to wait until June 10 to see Neurosurgery for the results. Hopefully we won't get delayed because of the reoccurrence of SARS.

Update : April 30th

Well it looks like even though the SARS scare has subsided in Toronto, we are still feeling the effects. Jennefer's MRI was cancelled and we are not sure when it will be rescheduled. After waiting 9 months we must now wait again.

Jennifer seems fine and exhibits no symptoms at this time. We were actually looking forward to a weekend at Camp Trillium this weekend. But SARS struck again. Makes sense to cancel it since all these kids go for treatment at the hospital on a regular basis. Can't risk exposing the these kids to something that could very possibly be fatal to them.

Waiting in limbo.........

Update : March 14th

Sorry for the delay in updating the webpage. We have been incredibly busy in the past few months.

Jennifer results from the usual battery of tests came back clear. Since then we have heard from Nerosurgery who have booked the MRI for mid April. We also were able to finally get Jennifer's Neurological testing after waiting over a year. Although it did not provide many answers, it should allow her to finally get the extra assistance she requires in school.

We have many more doctors visits planned in the next few months based on the Neurological findings. Thank you for all the emails and notes in the guestbook.

Update : January 8th

Went down to Sick Kids to see Nerosurgery, Genetics & to have a Echocardiogram. Jennifer's spine problems are more serious than first thought. It appears that the first vertebrae is putting pressure on the spinal cord and is actually causing it to flatten. The space between the bone and the spinal cord is less than 10mm which is narrow. They checked all her motor functions and everything seems fine for now.

The confusion about the MRI was not clarified, but they have scheduled a second MRI were she will be placed under general anesthetic. This will ensure she gets the MRI done. Unfortunately she might have to wait 6 months to get it done!

The list of activities she cannot do grows, but she is still able to skate (full helmet and face mask) which is something she loves to do.

Genetics is still trying to put the pieces of the puzzle together. They really want to have a true diagnosis rather than speculating. Echocardiogram seems to go fine.

Update : Nov 23rd

Results of the ultrasound are in. EVERYTHING IS OK!! Not having to worry about the cancer coming back is a huge relief.

Now we just have to wait for Genetics to get back to us on the "mid-line defect".

Update : Nov 19th

Ultrasound happened today. Not much to report.Even after 20 or so ultrasounds, I still don't really know what I'm looking at.

Jennifer is fighting a bad cold and croup, so every time she coughed the technician had to find the spot he was looking for all over again. They spent a lot of time looking at the liver from all different angles which I expected, but until the Doctor reviews the images, we have to wait for results.

Update : Nov 13th

We have been trying to confirm our ultrasound appointment for the last week and have not heard a thing. After repeated calls we finally found out that the person responsible for making the appointment did not even know about it! As it stands now, it has been an entire month since the original ultrasound was done. If there is a problem, that is entirely too long to wait. As far as Genetics goes, we have contacted them directly to see it they were not aware as well. We were only able to leave a message.

Update : Nov 12th

We got a call from Sick Kids hospital a week ago and it appears something showed up on both the ultrasound and the CT scan. On the ultrasound they saw a shadow on the liver that they feel is poor imaging and would like to do another test. As far as the CT Scan goes, they found a mid-line defect where 2 veins (or artery's) are too close together. We are going back to see Genetics about this one, but I'm not sure why.

Needless to say we are a bit concerned and are anxious to get the tests done. Although they are trying to reassure us that it's probably nothing, it seems every time they say that, it ends up being something.

More to follow........

Update Fall 2002

We had a great summer vacation in Newfoundland. Plan to post some pictures when we have time.

Unfortunately we had some bad news upon our return. My sister Carolyn had been battling a rare disease for the last 6 years that eventually turned in to ALS or Lou Gehrig's Disease. We spent as much time as we could with her and her 10 year old son before her death on September 19th.

We have now taken custody of Carolyn's son Calib. We are now a family of five.

One good piece of news is that Jennifer's initial test results from Oct 9th were good. Still waiting for the MRI to be scheduled however.

Hope to provide more updates now that things are settling down a bit.

Update - Summer 2002

Jennifer had all the usual tests including:

CT Scan of the abdomen
Chest Xray
Ultrasound
Blood tests

All tests came back fine.

As far as her neck is concerned, because we couldn't complete the MRI , Jennifer will now have to be put under. This will likely mean she will need to stay overnight after the MRI because she gets so sick from the gas.

On a good note the results from the CT scan and the X-ray show surgery may not be required immediately. The doctors feel they can wait for the MRI to get a better look but most of the limitations on Jennifer have been lifted. She still cannot do gymnastics in school and rides at Canada's Wonderland are definitely out.

We certainly plan on enjoying the summer. On August 1st we will be driving out to Newfoundland and spending two weeks touring the island.

 

More updates to follow.....