10 Months Post-Treatment

Today is Rebecca's last day of Grade 11, so I guess we can do her next for an update 😀

Last Day, Last Exam for Grade 11!! 

It's hard to believe that we have reached 10 months post-treatment.  The kids mentioned yesterday that it was a year ago that they visited the Coaldale school for the first time ... and on July 2nd it will be a year ago that the kids started treatment in Edmonton.  What a year of changes it has been!

There has been a lot of improvement for Rebecca in the past year.  She did not come out of treatment feeling any better and this was a disappointment for her at the time.  We had been told that she wouldn't feel better right away, but we had really hoped we would have at least seen some little signs of improvement at that point.  But as September rolled by we seen that there was definitely improvement in what she was able to manage each day by doing full days of school and treatment after school.  Unfortunately things went downhill from October to December and we struggled with evaluating whether there were any further diet changes we could make or changes to supplements.  We did some tweaking here and there and then Christmas Holidays came allowing for some extra rest and this seemed to help things.  As January slowly passed we seen improvement again and while there continues to be ups and downs, overall things have gone in the right direction.

Looking back we can see that things have definitely gone in the right direction.  A year ago she was dealing with regularly feeling lightheaded and having brain fog, bad neck pain, migrating joint and muscle pains, abnormal amounts of hair loss, regularly having bright pink cheeks, often a feeling like she had a fever even though the thermometer would say she didn't, occasionally having numbing and tingling sensations in random places and fatigue, fatigue and more fatigue!!

Currently she only occasionally gets lightheaded and brain fog, usually when she more tired then normal, she continues to struggle with neck pain, although with chiropractor and massage therapy it seems to be a bit better and she feels this is different then the pain she used to have, thankfully she no longer gets migrating pains, but does have to use caution when doing physical things as she very quickly bruises and becomes sore very easily, she no longer pulls out handfuls of hair at a time or feels like she has fevers, she doesn't have numbing and tingling sensations anymore, we do see the bright pink cheeks at times when she is going through a down phase or lacking in rest, a sign for those around her that she's not feeling very great, and then there is the fatigue, fatigue and more fatigue that unfortunately is still there.

Sometimes it feel like things haven't changed because of the constant fatigue that she feels.  This was always the biggest and most noticeable symptom and it continues to be there.  But when we look back at the list and see all the other things that have changed we realize that there definitely has been improvement and even though the fatigue is still a major factor, even there we have seen improvement.  Although it's not always clear whether the fatigue has decreased or just the lack of other symptoms has made her able to handle more, it is clear that she is able to handle more then before.  When I look back at pictures and remember that we used to use a wheelchair if we were going anywhere that required more then the basic walking because she simply did not have the energy to walk and even with the wheelchair she would often feel drained just from being out and doing more then the basics and want to go back to her bed, then I realize that she has come a long ways in the past year.  We can also see the improvement in energy where in the past couple months she has moved from just going for a walk for her daily exercise to actually going for a short jog a few times a week.  These jogs are usually only 5 minutes long, but this is huge considering getting her to go for a walk used to be such a challenge.

Visiting the Alberta Legislature Building as one of our outings last summer during treatment.

Over the past year we have seen the social side of Rebecca resurface.  She loves to do social activities and be involved but the past couple years it has just been too much.  She now carefully paces herself and is very good at setting limits.  She will try to partake as much as possible but leaves early to make sure she gets her rest.

On the school side of things she has not only been able to take up an almost full course load (she is not doing Phys. Ed.) but she also is part of the Student Council and ARPA clubs. She made it to school pretty much every day of the year, I can only really recall one time that she stayed home because she was just too tired to keep going. At the end of November she requested to apply to attend the ARPA God and Government Conference in Ottawa in February.  After some thought we decided to allow her to apply even though we did not feel that she was up for it at that time, but since the conference was a few month away we agreed that if there was no improvement by that time then she would not be able to go.  Not only was she chosen to be a delegate, but by February she was doing well enough to take the trip.  This was super exciting for her and us as parents as we know her love for politics and we were so happy that she was able to partake in this opportunity.

All ready to leave for Ottawa - her first time flying!

In January we seen our new family doctor and at that time blood work was run and it was found that Rebecca's iron levels were low.  This is not a new issue for her, as a child her iron levels would fluctuate abnormally fast. So she has been placed back on a supplement and we thought maybe it was helping, but recently she has really been struggling again and so she has a follow-up appointment to go over blood work again next week.  The issue with iron is that you end up with the same symptoms if your iron levels are too high, and it can also be dangerous if your levels are too high.  While normally one struggles with just getting the numbers to go up a little bit (as was my issue for years), when she was younger she would have her levels jump drastically and so she had to be monitored closely to keep them from going too low or too high.  In the past years the levels were remaining stable on their own and she no longer had to take supplements or watch then, so we'll see at her followup what the supplements have done for her this time.

Before we left Ontario we had an appointment with the Sleep Clinic where it was advised that Rebecca has Upper Air Resistance Syndrome and they recommended trying CPAP.  When Rebecca hits the pillow she is asleep instantly and even on her sleep test she was asleep in 1.9 minutes.  We asked for the testing wondering whether she was actually truly getting proper sleep and also wondering whether she has periodic limb movement disorder as she would kick and squirm in her sleep.  The testing indicated that it took her a long time to get into a deep sleep and that she had a few breathing stoppages, not enough to be considered apnea.  Because CPAP needs to be monitored when you first get it, we were not able to start her on a trail to see if it would help.  Coming here we had to start over with this process and the ENT decided that he would like her to do another sleep study as it is very odd for someone her weight and age to have these issues.  So a couple weeks ago she went for another sleep study and now we are waiting for the results.  Interestingly, in the last month Rebecca has changed from falling asleep immediately to  been having trouble falling asleep, an even greater frustration when one is so exhausted and just wants to get proper rest and then can't get to sleep

All wired up and ready to go to bed

While we were living in Taber Rebecca also was able to find the energy to return to playing the piano before the church service, as well as the first congregational song.  Between this and playing for the school choir it was nice to hear the piano regularly and for her to have some incentive to pick up music regularly.  Unfortunately Coaldale does not use the piano for the church services, which she is somewhat disappointed about.

Play pre-service as well as the first congregational song

In March Rebecca was finally able to get her Class 5 GDL (known as G2 in Ontario).  In Ontario she would have qualified to get her license in November, but with moving she had to wait a full year from when she got her Class 7 (G1/Beginners).  She was not too impressed about this, especially considering that in Alberta you can get your Beginners at age 14 and your license as soon as you are 16.  In the big picture it is only four months of extra waiting, but at the time it seemed like a long extra time to wait, especially to Marietta who was so looking forward to having a new chauffeur.  As parents we are loving that the girls are now able to go out on their own, at the same time we were very thankful to those in the area that so often would give them rides.

The examiner told me that Rebecca did a great job on her test.  For Rebecca it was a bit of a breeze since she did the test in Taber (a town slightly bigger than Dunnville), whereas her learning had been in Hamilton and city driving.  Rebecca loves to drive and has a bit of her father's diesel blood in her. It's a comfort as parents when you know your child is a cautious, careful, but yet confident driver.

Rebecca was our child most against the idea of moving to Alberta.  We discussed this idea already a couple years ago and she was more than adamantly opposed, but as things progressed the past 18 months she silently went into acceptance that this was likely the route we would take and when the time for a decision came she was okay with the idea.  Rebecca is our shy and quiet child (most of the time) and so settling into new surroundings is more challenging for her than our bubbly outgoing Marietta, but we are so extremely thankful that she quickly settled in here and did not suffer from any extreme homesickness.  This is not to say that she doesn't miss Ontario and certain aspects of it, I think we all do, but as parents we were definitely concerned about how she would fair health wise and mentally if she did not like it here and we thank the Lord for allowing this process to go so well. It is our continued prayer that with time we will see more improvement in Rebecca's health and that one day she may have more energy and stamina, but at the same time we are so grateful that the treatment she has undergone has helped so many aspects of her health and pray that this will remain stable in the years ahead.

"O give thanks to the LORD, for he is good, for his steadfast love endures forever!"  Psalm 107:1