Home Sweet Home

It was a rough weekend for Thomas - his veins have gone so deep and in hiding from any needle, but he needed his bloodwork checked every day so they could get his platelet counts up in time for the surgery today. And his IV came out twice accidentally  - we really put everyone through their paces!

On 5 of the past 7 days he received platelet transfusions. (so grateful for all you donors!) Fortunately, no allergic reactions!

He now has his port, and we received a manual, complete with ID card, wristband and keytag so that other people know he has a port. It's name brand is Power Port. This port is also designed to be able to accommodate the dyes that are used to complete CAT scans and MRI's. Apparently the ID card is issued in case the port should set off an airport security scanner, or be subject to (God forbid!) a recall.

They took him into surgery at about noon, and he was back on the ward by 3 PM. They did end up having to use a general anaesthetic, which they had hoped to avoid because it tends to depress the body's immune system further. However, what's done is done, and at least there were no complications.

It's been implanted on the right side of Tom's chest, almost right over where the Hickman used to be. As I understand it, they begin by making a small incision in the chest, and then using a special x-ray they fish a guide wire under the skin up to one of the large blood vessels that goes directly to the heart. Then they replace the guide wire with a small flexible tube or catheter connected to the port, which is placed underneath the skin further down in the chest. The port itself is a cylinder with a hollow space inside of it, and is sealed by a self-sealing silicone top. The skin is closed up over top of the port. When it heals over, you will only be able to see a small bump under the skin. When a special needle is put into the soft top of the port device, it creates access to the bloodstream. Via that external needle, blood samples can be drawn, and medications and infusions can be administered. The Hickman tubing stuck out of his chest, which is why it was difficult to heal and why we were more careful with getting it wet or guarding against infection.

The point or benefit of either central venous access device is that the patient doesn't have to endure repeated needle sticks to his peripheral veins in their arms, hands, wrists --- well, you get the picture.

He will still have to endure a needle poke in the chest when the port is accessed. To counteract this, they'll apply a topical anaesthetic (like EMLA) about an hour beforehand to numb the skin so the poke won't hurt as badly. One of our friends (a fellow Ewing's patient) recently received surgery in Toronto and brought back a different kind of lidocaine ointment called Maxilene that only needs about a half hour to freeze the skin - so we are going to give that a trial run, as her mom lent us a tube.

Although the Hickman didn't hurt to be accessed, it did have the drawback that it needed to be 'Heparinized' every 2 days either by us or by the clinic/hospital to prevent blood clots from clogging the line.

In comparison, once the incision has healed, there isn't anything else for us to do with the port. He can swim or shower as normal, and the port only needs to be flushed and Heparin-locked at least once a month - or after each treatment - whichever comes first. This is the part that sounds like a big benefit for Tom!

We had originally been told Tom would receive a dual lumen or double topped port, but that doesn't seem like that's what he received, based on the literature provided to us at discharge tonight. So we sincerely hope that this single lumen port is all he will need so he doesn't have to go through this procedure again!

We expect he'll be black and blue in a day or so from all of this, but we are grateful and relieved that it's finally over. His chest and right arm are quite sore, and he can't use the crutches to walk right now because they hurt his underarm muscles too much. Hopefully, things will stay well and calm for a couple of days and he can regroup. He's scheduled back at the clinic on Thursday to check blood counts again.

Thanks for checking in, hope all is well with you.

Please feel free to call or text Tom to let him know you are thinking of him! Contact from friends and family means a lot to him.

Take care,

Thomas' Mom

Back at Chateau Pasqua

"Chateau Pasqua" (also known as the Pasqua Hospital) is a nice place to visit, but you wouldn't want to live there!

And we felt like we did live here for almost a year, during the course of Tom's first 14 rounds of chemo. I think what makes it hard to accept is that we thought/hoped/prayed that he was done being here as a patient, and that we could just come here to visit our friends.

Thursday morning we had planned on coming down to the clinic to check Tom's counts anyway: we wanted to ensure that his counts were checked before the weekend in case he needed blood or platelets on Friday, and we also needed to make sure his counts were high enough to go in public places for 2 good reasons: 1) he wanted to visit his school and sing with the choir, and 2) we had tickets for a comedy show.

He was very groggy and hot to the touch when Mike went to wake him Thursday morning. He had a fever of 38.6 C. Every cancer parent knows that 38.0 degrees is the cutoff point that you phone your oncologist or get your child down to the clinic or hospital, because it's a sign that your child may be fighting an infection. Since it was only 30 minutes before the clinic would normally open for the day, we went straight there as soon as we could get organized and Mike could shovel a path to the van for Thomas (who is still using crutches). As we arrived at the hospital/clinic, Tom had another nose bleed - seemed likely that he would need platelets again.

Sure enough, the blood tests confirmed that his platelet counts were still very low, despite the transfusion on Monday. His platelet count was only 14, so they started making preparations to transfuse more platelets. After the doctor examined him, he felt that Tom more than met the criteria to be admitted.

Tom wasn't very happy about it...and who can blame him?

On the upside, Reyce is here, and we are happy to see, seeming to bounce back from pneumonia. He is just across the hall. This morning he sent two different nurses over to see if Tom was ready to come and play video games! I got the two of them set up in Reyce's room, and Tom played for quite awhile, until his leg started to go a bit numb from sitting in one position too long.

One of the pain management specialists came up last night, and they have decided that since the pain seems to be so well under control now - we haven't had to increase anything since December 30th - that we could safely start tapering some of the meds off. So we began that today, and will move very gradually. This is a good sign, and hopefully means that the chemo has been effective in shrinking that new tumor.

The anesthesiologist came by: they need Tom's platelet counts to be at 50 before the surgery, so he will get a transfusion on Sunday and again on Monday, right before the procedure. They will do the procedure under a local anesthetic with sedation, and the anesthesiologist will be standing by in case any complications should arise and they need to knock him out completely. They are reluctant to do that because anesthesia actually lowers your body's natural immune response, something that Tom really doesn't need at this point!

If you are in Regina and healthy, Tom would very much enjoy your company at the hospital. His counts are up a bit today, so he's already on the rebound. In fact, Dr. Haq was surprised, as he expected them to still be on the way down today! Thomas was teasing him for being wrong, and Dr. Haq said he'd be quite happy to have Thomas prove him wrong on many fronts!

He might be lucky enough to get a pass for a few hours out on Sunday. If you're unsure whether its a good time to come, just call or text Thomas, Mike or I to check it out ahead of time.

We are so grateful for family, friends - and those friends who have become like family this past year and a half. Thanks for your continued interest and support in our journey.

Have a great weekend, God bless.
Thomas' Mom

Praying for our friends

Our young friend that we met at the Ronald McDonald House in Calgary, Charlotte, has relapsed again. The tumor that invaded her skull is back and with a vengeance. January 11th Update on Charlotte from the blog her mom updates tells the latest. Our  hearts are heavy for the Amsing family as they wait to find out what this terrible disease has wrought.

In addition, Tom's little buddy Reyce, who is fighting a rare variation of Leukemia, has developed pneumonia. Pneumonia is a very serious illness when the patient is a little boy who has been sick and fighting cancer for over a year. He's not responding to the antibiotics and has a fever that just keeps coming back.

Please pray God's protection for Reyce, Charlotte and all the children with cancer. We pray also for wisdom for the doctors and strength for their parents. Sometimes that is all we can do, is pray. And it's important to do all that we can.

How's our boy Tom? He had chemo every day, Monday through Friday, on an outpatient basis in the cancer clinic last week. Typically, he ended up being there from 8 AM to about 2 PM. We made sure that either Mike or I, and sometimes both of us, were with him to keep an eye on things and help pass the time. And Nancy spent the day with him when we went to Uncle Murray's service last week. Not that he needed us much, as long as he could play XBox 360 he was a happy guy. We appreciate those who've been able to stop in and visit, and help to make the time go faster!

He ended up in Emergency on Saturday (fever) and again today (nose bleed), but all is under control - these are actually fairly normal events in the life of a cancer patient. He hasn't had to be admitted to the hospital for an overnight stay this year (haha - I know, the year is only 11 days old). He received platelets and is actually feeling pretty good today - knock on wood. The pain is now well-managed and he hasn't needed anything over and above the daily routine of meds for breakthrough pain since December 31st. And, big plus, we have now weaned him off the Dexamethasone, which was making him cranky and swollen and really not himself. Not to mention the fact it gave him the appetite of ten teenage boys! It's nice to have our sunny dispositioned boy back!

They called us today to let us know that surgical implantation of his port in his chest will be on Monday, January 17th. It will be a day surgery, and he won't have to stay in unless something unusual happens. He will then have some time to recover, and his next chemo will be on February 7th. Right now his white counts are too low to go out into crowded public places, but we're hoping that will resolve itself shortly as we have tickets to comedian Jeff Dunham on Thursday night, courtesy of our dear friends at the Chris Knox Foundation.

Dr. Haq is still looking into what other treatment options are viable, so we only know the plan for about the next month.
But right now, today, he is fine. We are okay, right in this moment. For now, that's enough. We know what struggles so many others are having and feel fortunate. We are focusing our energy on wishing them well.

We are so grateful for your kind thoughts and prayers,
Thomas' Mom

Uncle Murray

Robert Murray Donaldson
June 30, 1920 - December 31, 2010

My Uncle Murray, my Dad's big brother, was born at home during an era when most people were - whereas today everyone is born in the antiseptic environment of a hospital. His birth certificate showed his birthplace as the land location (North East quarter of 34-17-31, West of the First Meridian) of the family farm. My dad, the baby of the family, was born 13 years later (1933). Murray has often told us that when his little brother was born he was somewhat dismayed. It was the middle of the Depression, and he 'could think of things we needed worse'. Fortunately, Murray never  held it against Dad; he was part big brother, part father figure to our dad while he was growing up.