Cool Surprise

Courtesy of the Leader Post newspaper and the Chris Knox Foundation, we were offered 4 box seats for a game at the World Juniors Hockey tournament today!

Steph, Tom, Mike and Jeanie went on down to the game, where an extra surprise awaited them: 2 members of the Riders were there to watch the game with them - Jeremy O'Day and Gene Makowsky, two of our favourite football players. According to the members of our family who were there (Laura was there with some fellow students and popped in), they are just as great in person as we might imagine they would be.

What a neat opportunity!

Thanks again to the Leader-Post and Chris Knox Foundation for your generosity and hospitality.

P.S. Austria was embarassed 7 - 1.

New Year's Resolutions

Like Calvin, I haven't made any New Year's Resolutions either. My reasons aren't quite as intellectual as his...

My problem is that typically, they go in one year and out the other!

TTYL,
Thomas' Mom

source: Calvin & Hobbes, copyright material of Bill Waterson

Merry Christmas from the Fahlman's

Hoping all of you had a wonderful Christmas, and that everyone is safe and sound. Our gratitude list is simple, but lengthy this Christmas:

Tom came through his last chemo of 2009 very well, and only stayed one night in hospital. He has graduated from radiation - his last treatment was on Monday December 21st. He had 31 treatments in total - and he's so glad to be done.

We enjoyed Christmas Eve service at Celebration - taking time to reflect on Jesus' birth, and sharing Christmas greetings with our church family.

We came home to munchies and a movie before hanging up the stockings and heading off to bed. Unfortunately, I was up late wrapping gifts because I had only finished shopping on Christmas Eve! I have occasionally had one or two things left to buy on December 24th, but never been this far behind!!!

Santa was good to us - no lumps of coal or rotten potatoes. One of the gifts I am very excited about was from our kids: they pooled their money to contribute to World Vision, and donated enough to immunize an entire community! I've added a link to World Vision's online catalogue in case you're interested (see list at right) in doing something like this in your own family.

We shared Christmas dinner with my Mom, and our neighbour Jim helped us get her in the house and up the steps. Boxing Day brought my little brother Wayne, Tracy, Harley, Dale and Wyatt, and we again picked Mom up for the evening to visit with everyone. All too soon, they've gone home again.

The holidays also prompted us all to make calls to one another, on both sides of the family, and reconnect - calls from places from Alberta to Australia and all across the province - we loved hearing from everyone.

We've been using Flamazine to treat Tom's radiation burns this week, and although there's been some ups and downs, I think his skin has turned the corner now and is starting to heal much better.

We got news of a Boxing Day addition to the Fahlman clan: a great-neice on Mike's side, Sophie was born to Jay and Evie, a little sister for Mitchell. Can't wait to see her!

It's nice to have some down time together - Tom got discharged from the hospital on Tuesday afternoon (the 22nd), and we don't go back until Monday (December 28th) to check blood counts and see the doc. That's our longest break from the hospital or clinic in nearly 2 months! That's something to be grateful for in and of itself. He's been through a lot and still has his sense of humour - joking that his leg looks like a pinata that someone has been going after with a 2 x 4!

And Steph arrived this afternoon for a few days stay as well.

All these things above - these are the things we have to be grateful for this Christmas: family, friends, good health and all the comforts we enjoy. We thank God for all these blessings, and pray for his continued protection and healing.

We especially appreciate all your support and prayers - kindly keep it coming! There's still quite a journey in front of us, and we need all the help we can get. Thank you for making a difference in our lives.

P.S. Our online blog readers are counted as friends as well - we just wish we knew who  you all were! (Hint, hint - please post a comment and send us a list of what YOU are grateful for this Christmas.

Blessings to you all,
from Thomas and Family

Only 5 more sleeps!

Only 5 more sleeps till Santa comes!

The Santas Anonymous program was very successful this year - even though there was a 40% increase in the number of children registered in the program, the community response was amazing. Not only will every child receive a gift, they were even able to top up the gifts, i.e., adding a stuffed animal to a game or toy. Mike, Nancy, Jeanine and her friend Ashley went down to help with the wrapping. Tom and I weren't quite up to it. The volunteer turnout to help wrap gifts was also terrific - they finished by 12:30 on Saturday. 4,000 presents were wrapped in total. The program is coordinated between the Food Bank and Salvation Army to help ensure that every deserving family is reached and to avoid duplication. I'm proud of our community's response - I hate the thought of kids not having any gifts to open at Christmas.

Jeanine and Nancy were deputized to help with our own Christmas shopping on Saturday, and then I got out with them for a little while this afternoon - so we are inching closer to being ready. Laura's been pretty tied up with school, Business Students' Society, and her work on the Santas Anonymous campaign, and won't be done exams until December 23rd - we've barely seen her the past few months! Of course, now that Christmas is here and Santas Anonymous is done, she has a new dilemma - she needs another job. So if anyone knows of a part-time opportunity for a bright, talented 4th year business student with decent hours and wages... let her/us know!

Tom's radiation burns are still troubling him quite a bit, but I think that's to be expected at this stage. We'll go to the cllinic tomorrow, hopefully for his last radiation treatment. We're excited to mark this milestone and owe a huge thanks to the wonderful staff in the Radiation department - they have been terrific with Tom and with us as a family. Counts permitting, we'll check back in to our 'hotel'. As with our last stay, only parents and grandparents are allowed to visit in Pasqua Pediatrics right now.

Mike's mom is going to spend Christmas with his brother Brian, Jane and family, and we'll bring my Mom over for dinner on Christmas Day. We're hoping my brother Wayne, Tracy and their boys will also be able to join us. We're looking forward to enjoying some time at home together, and hopefully not be running in too many different directions. We hope that family and friends - of ours and of our kids - will call and stop in, so we can get caught up with the folks that we've lost touch with in the whirlwind of the past few months.

I hope that everyone has the opportunity to slow down in the next few days and get in touch with 'the reason for the season'.

I plan to sit down by the end of the week to post our Christmas edition of our gratitude list - and we do have so many things to be grateful for.

Wishing everyone safe journeys, whether near or far!

Thomas' Mom

And then there were 2

It's official: as of today, only 2 more radiation treatments left! It almost sounds too good to be true.

Tom's counts have held really good since the chemo on December 8, surprisingly. This coming week, on either the 21st or 22nd, Tom will complete a similar round of treatment and have at least one night in the hospital.

Then, 2 weeks later on January 4th, providing his counts are high enough, they will put him back in the hospital and resume his "normal" CHEMO (full strength) schedule of every 2 weeks, alternating between the 2 different chemical regimens. Picking up where we left off, his treatment in January will be #9. So the good news is, barring any complications, we're at home for both Christmas AND New Year's!

We have also learned that he will have all new scans done in January: MRI, Bone Scan, CT Scan so we will finally get a status report on how everything is going. In a way, the answers are immaterial, because we still have to proceed with the treatment protocol, but it would be reassuring to know for a fact how much progress has been made.

The skin on the back of his legs is still pretty raw looking; we've started using a hydrocortisone creme in addition to the Lubriderm lotion. But overall, he's feeling fairly well and has attended more classes than usual this week as a result. Yesterday, the choir did some carolling in downtown office buildings, and he was able to join in. Today, he'll be in German class, where apparently they are having a decorating competition with the French class. On Tuesday night, he and Mike took some friends along to the Team Canada Juniors Red and White hockey game (thanks again to the Chris Knox Foundation).

It's funny how the little things mean so much.

I was blessed to grab a quick lunch with some of my friends from work this week. It was terrific to see the gals, and hear about their lives, even though it was a speed visit. And last night, Laura, our adopted daughter Molly and I went to see the Symphony perform Handel's Messiah. Another of our adopted kids, Kent, was there as part of the chorus. Such beautiful music! As with Tom, I've come to appreciate the little things that I used to take for granted...

Hope everyone is having a good week. It's started to warm up, it's only -10 Celsius today!

Thanks for checking in on us and keeping us in your prayers.

Take care,
Thomas' Mom

P.S. For those who may not know... we are lucky to have several 'adopted' kids - our kids' friends are an important part of our family!

Counting Down

We are not only counting down to Christmas (only 12 more sleeps), we are also counting down to the end of radiation. The coming week should be the last full week, if all goes well. Tom's skin is getting pretty burnt from the radiation - it looks like a fairly bad sunburn right now - so he needs to be more diligent about putting on lotion to keep his skin in healthy condition. We don't want him to get an infection or have anything happen that will delay or lengthen his treatment.

I have to admit, I'm having a hard time getting any Christmas shopping done. I haven't had any energy for it, between the hospital schedule and the intense cold we've been "enjoying" this past week (-31 Celsius today, not including the wind chill). Time is running out so I am going to have to get it in gear pretty quick. I need to slip out and get my Santas Anonymous shopping done right away, if nothing else (donation deadline is end of day Monday).

When I get bogged down in all the "have to's" on my list, it helps me get calm and centered when I think of how much we have to be grateful for:
* we have a warm home and plenty of food on the table
* we have four unique and wonderful children, and Jeanie is coming home soon for Christmas
* we have many wonderful adopted children, and enjoyed a visit from Steph this weekend
* we have the love and support of our family, friends and church community
* in particular, we have friends like Geri I. who remember us each and every Christmas
* we have terrific medical care right near our home and it is nearly all financed by our tax dollars
* we've learned a blanket warmer is on order for the Pasqua Pediatrics Unit! (Yay!)
* we know that God has our back.

Speaking of Pasqua Peds, I've recently learned that directed donations might be a good way to help address some of the outstanding issues on the ward where funding is required.

So if you'd like to contribute to either equipment or entertainment needs in Pediatrics,you can either send the Hospital a letter or note with your gift specifying how you wish your donation to be used, or you can donate online.

If you prefer to donate online, then click on the link shown below. When it comes to the "Designation" question, select "Other", and then make sure to specify the Pasqua Pediatric Unit and either entertainment or medical equipment in the comments section. Here's the link:
Hospitals of Regina - Secure Online Donation Form.

I know that no donation is too small - and donations are tax deductible. Without designating where you want the funds to be used, the money ends up in the general pool - which is fine, but may or may not be what you intended.

We hope to learn more this week about what to anticipate in Tom's treatment between now and year end, and will update you when we know more.

Please join me in praying for light and love to surround those struggling with life threatening or terminal diagnoses, or who have lost a loved one, as this time of year is particularly hard. This can be a hard time of year for all of us when the pressure is on to be happy and festive - a lot of the stress we feel is the result of unrealistic expectations. And sometimes we are our own worst enemy when it comes to unrealistic expectations (this is one of my challenges in life!).

Hope this note finds you all well and not getting too bogged down with your "have to" do lists. One of the things I find helpful is to remember to take some deep breaths, and count my blessings.

Bless you all,
Thomas' Mom

That was easy!

Tom found this week's round of chemo fairly easy - it only required a one night stay in the hospital, for one thing! He felt good enough to go to a Pats hockey game with Dylan and his family last night - but is more tired today. His counts today show that his hemoglobin is starting to dip down to 100 so that is likely a factor, on top of having had chemo and 24 rounds of radiation - it stands to reason he'd be tired. I'm hoping he'll get back to school on Friday afternoon if he bounces back.

This round of chemo consisted of Vincristine, Cyclophosphamide and Mesna - almost like his 3 day regimen typically is, but without the Doxorubicin. That drug would be hard on his heart if given at the same time as radiation. The other thing different from previous rounds is that he no longer receives Maxeran (Metaclopramide) because he had an unpleasant reaction last time.

Having both of these drugs out of the mix likely helped make this round easier to tolerate. He found that he was able to eat and stay fairly active during this hospital stay - which is not the norm! The nurses couldn't get over how well he looked, and the staff all wanted to check out his new hair... his hair has been growing back in since the chemo isn't quite as heavy duty, and he has brand new hair, eyebrows and eyelashes.

We saw Auntie Sharon and Uncle Ray briefly in the clinic today, as she was on her way in to an appointment. She appears to be doing well, and I believe is nearing the end of treatment.

Jeanie comes home from Lethbridge next week and we're looking forward to that. Both she and Laura have exams to write yet, so hopefully both will do well. Nancy's been knitting up a storm lately, in her spare time from working - and I got to be the first beneficiary of her new talent - she gave me her very first scarf, and I've gotten a lot of compliments on it.

And believe me, you need to bundle up these days! It's -28 Celsius right now as I write this (that's about -18 Fahrenheit for our American friends) and that's not counting the wind chill. The night we stayed in hospital, Mike had our pal Gerry drive him down so he could pick the van up and keep it in the garage overnight - we were worried it wouldn't start if we left it out unplugged all night.

By the way, the radiation techs are telling us that they have Tom scheduled for 31 treatments, not 33 as we had previously thought. So as long as no one changes their mind, he'll be done radiation on December 21! (But just to be on the safe side, we are still going to count down from 33... that way if he's done sooner it's a bonus to us.)

Steph is coming to visit this weekend - her last chance before Jeanie reclaims her room for awhile! Jeanine will be home next Thursday for Christmas break.

So, hopefully I haven't put you all to sleep with the mundane details of life ... I have nothing exciting to report, which in my mind is a good thing.

Hope all of you are being good - Santa is watching!

Take care,
Thomas' Mom

Back to Hotel Pasqua on Tuesday

It was a fairly quiet weekend at home. Sunday, Tom was able to participate in both performances of the annual Luther Candlelight service. The services included performances by the female and male choirs, the senior choir, the advanced ensemble, the handbell choir and an extremely talented string quartet. Many performances were accompanied by the Luther band, others were a capella. Performances were interspersed with group carols and scripture reading. Tom was feeling pretty worn by the end of the second service, but was really happy to have been there. We're very proud of him!

After the second service, everyone returned home to enjoy a delicious chocolate cake that our niece Laurel made and shared with us.

Today we learned that Tom will need to be admitted to the hospital overnight for his chemo this week. This must be done because the drug that's being added back, Cyclophosphamide, is one of those chemo drugs that must be thorougly flushed from the body in order to avoid toxic effects to the bladder. Tom will need to be admitted for at least one night in order to receive enough hydration intravenously. As you can imagine, he's not real thrilled, but what must be, must be.

At first they wanted to do the chemo today and keep him tonight, but we asked for a deferral - Steph and her family are coming to town today and were going to take Thomas with them to see Stuart McLean's comedy show later this evening. Dr. Haq agreed to the delay, so they'll admit him to the ward tomorrow (Tuesday) after radiation. My understanding is this chemo will not count towards the protocol total of required rounds, because they still won't be able to add all the meds that he would normally have. Of course - I could be wrong.

Unfortunately, due to H1N1 there is currently a restriction in place for the Pasqua Pediatrics ward right now - visitors are restricted to parents and grandparents only. No other visitors are allowed, including patient siblings. Thankfully, as long as all goes well, this should be a short stay. He'll have his cell phone with him so if you want to text or call him, please go ahead!

Today we met a couple of patients in person that we previously only knew through the grapevine, so to speak. Each of them have ALL - a type of leukemia - but their situations are so different. One child has a very good prognosis, and the other's prognosis is fairly uncertain right now because he has a rare mutated chromosome and has relapsed.

Recently, my friend Sharon's sister relapsed. Her cancer has spread extensively and she has been classified as palliative. Sharon and her sister lost their mom to cancer when they were also in their 20's. Sharon's sister is only 47 years old and her daughters are in their early 20's. Sometimes things seem so harsh and unfair.

We will keep these patients and their families in our prayers. Some days it's hard to keep spirits up when sorrow is all around.

We find it helps to remember how much we have to be grateful for:
* each of our four children
* our family and friends
* the great staff at the clinic, in the radiation treatment area, and up on Peds
* Little Bald Angels - a group that provides helpful gifts to each patient at Christmas (like grocery store and gas station gift cards), as well as the healthy snacks and refreshments that patients and families regularly enjoy in the clinic
* the support of our church community and the grace of God
* chocolate!

Take care everyone. Hope you have a great week - please take a few minutes when you can to review the prayer list for both Tom's sake and all those other families.
Thomas' Mom

Here's What's Up, Doc

The x-rays show all is well. The central line is still correctly placed, even though the stitches externally have loosened. The surgeon said they often see this with central lines, and that since there is a cuff under the skin that has been knit into his body, there is no concern. He left the external cuff of stitching in place so we have a marker - if the distance between the stitching and Tom's chest grows, then we know it's slipped out and we need to do something more. But for now he's golden.

We got a call from the radiation oncologist: starting with this afternoon's treatment Tom no longer needs to make sure to have a full bladder before radiation. This change automatically shifts things around internally, and means Dr. Haq and Dr. Afzal (the new oncologist who recently joined the Alan Blair Clinic) are free to add some other meds. Now we just need to wait and see what his chemo oncology team wants to change and when.

Onwards and upwards, right? Hope you all have a great weekend. Please come on out to Luther's Candlelight service if you can.

Thomas' Mom

Please note: this post has been amended. We learned later on Friday that they don't need to actually change the radiation field. Simply by having the bladder empty before they treat him, it changes things up internally.

What's Up?

We feel like we've had a busy week and it's not quite over...

Naturally, we are at the hospital every day for radiation. Today was treatment #19, so only 14 are left now - he's on the downhill side of the radiation phase.

On Tuesday, while I was cleaning his exit wound and changing the dressing over Tom's central line the anchor stitch holding the tube in place came completely out. He had a chest x-ray today while we were there so they can tell if the line is still properly placed, and we will make a trip over to the General to see a surgeon on Friday. It's important the central line is correctly placed before his next round of chemotherapy. If the medication were not going directly into his veins, the results would not be pretty - as these meds are extremely toxic. You know if they need Haz-Mat suits to clean spilled 'medicine' up that it is pretty serious stuff!

On Wednesday, the radiation oncologist advised us they had Tom booked for another simulation CT on Thursday, as the team still doesn't feel completely happy with the level of chemo he is receiving. Currently, about 1/5th of his bladder is in the radiation field, and because of that, there are a couple of chemo meds that they dare not give at the same time - because they pose higher risks to the bladder.

They are going to re-examine everything to see if they can modify the radiation field slightly, and keep the bladder out of the radiation area. Then they could consider adding back one or more of these stronger chemotherapy drugs to the mix. Today we went to the hospital about 1 1/2 hours before radiation, so he could get his regular bloodwork check and his simulation CT beforehand. We aren't sure when we'll learn what the team decides. Just when we thought we again knew what was going on. I think we've come to terms with that living in the unknown. Now, I just go where they tell me to go. (Now there are some reading this who may find that hard to believe, but I am not fibbing!)

His blood counts are still good - no transfusions or quarantines needed at this point. However, his energy levels are really low, and he's only been able to attend one class most days. We've both been feeling really tired and I haven't had the energy to post much lately, sorry about that.

We saw a physiotherapist yesterday. Overall, he was pleased with the range of motion Thomas still has with both legs, and recommended some specific stretches for him to maintain that and strengthen his muscles. He thought it might be a good idea if we got some basic in-home exercise equipment. As it's now very snowy and icy in the neighbourhood, it's not such a good idea for Tom to go for walks outside just now. His bone density has really been depleted and he would be at risk for a broken leg if he fell.

That's it for now. Hope you are all doing well. On the up side, Tom is still strong physically and is keeping a positive attitude overall - for which we are grateful. One thing the lighter chemo done is that it's given his eyebrows, eyelashes and facial hair a chance to grow back!

Bless you, and thanks for continuing to check in on us.
Thomas' Mom