Xander went in for his annual Occupational and Physical Therapy evaluations.

Scheduling is getting better in that we got both tests set for the same day.  Even though it meant more testing at once, it was less overall disruption to Xander's schedule.

He did well in OT, but we did not yet get the results.  But he seemed to be doing most of the age appropriate tasks

He had fun in PT, doing somersaults, jumping, twisting, throwing, walking and running.  His left foot noticeably affects both his walking and running, which we knew was an issue already.  We're still in a wait and see if it corrects itself.

The Physical Therapist recommended physical activities like swimming and martial arts to help his strength, balance and coordination.

The part that is frustrating is that Xander is again in the grey.  He scored a relative 76 in the tests which is 6 above the cut off of 70, where they start getting concerned.  Normally developing children generally score anywhere from 85 to 110.

Xander went in for his first Neuropsych appointment since he was three.

He went in with Mom, and Dad stayed home with Willem, so that Xander could concentrate fully on the three hours worth of testing.

The evaluator indicated he applied himself really hard and has a desire to learn, which is great to hear.  He liked some tests, disliked others, had some well deserved breaks and in general had fun, even after some initial hesitation.

We had the follow-up and the feedback was what we expected.  In general Xander is doing well, he accels in some areas, like pre reading skills, but falls off on others where physical coordination is involved.

The areas where he seems to be having the most problems are expressive language, which makes sense with his speech difficiency.  There is also question on how much his hearing is playing into the problem.  We will hopefully get a better idea with his next hearing test.  The other is his skills relating to physical coordination.  We know this is a problem are but he is in the grey and does not qualify for Occupational Therapy.  We've had this worry from his first OT eval.  Now when it starts to potentially affect his educational experience we get very concerned. 

The doctor is aware of this position and will try to educate the people reading his evaluation.   We will need to give a copy to his new school so the teacher and speech therapist.

That is life for a cancer survivor, a lot of hard work just to maintain a semblance of 'normal'.  We're so glad that Xander loves to learn, it will be his saving grace.

The dreaded Refulx monster has reared its ugly head again.

Xander has been stopping what he has been doing periodically and getting a pained look on his face and tears in his eyes, while swallowing and sometimes coughing.  When asked what was going on he explained that his throat felt 'yucky'.

This was what we had taken Xander in for testing when he was first throwing up sporadically, in the beginning.  So it's a bit of a sore spot with us.  We called Xander's Nurse Practitioner and explained the circumstances and she put him on Zantac.  After about a week he was still experiencing the same symptoms.

We called Corrie up again and she put him on Prevacid.  We were now back in post treatment territory.  We did a bit of research on reflux and found that a common cure was Apple Cider Vinegar.  Which to us, is hilarious, since Granny has told us repeatedly that it is a cure-all.  So we are trying it and it seems to be working fairly well with the Prevacid, which he only takes in the morning.  We give him ACV before each meal and Acidophilus as well.  Yum, yum.

He has an appointment with the Gastrointestinal specialists and we already know what that means.  Some potential testing he will not enjoy in the least.  I guess we'll have to see what they have to say.

Xander is now a Five Year old. 

Xander went through a successful MRI today.  Another 6 months until the next.

This one was especially hard since Xander's Nurse Practitioner was elsewhere, helping a friend through surgery.  So we would not be getting our normal 'head's up' before meeting with Dr. Geyer in the afternoon.

The procedure went fairly smoothly and is getting fairly routine for everyone involved.

The wait in between the end of the procedure and meeting with Dr. Geyer, in the afternoon, seemed to have taken forever.  About every 10 minutes we'd check our watches thinking it would be much later than it was.

Finally we got into one of the personal meeting rooms in Oncology and a resident came in to tell us the good news.  He checked Xander out and paved the way for Dr. Geyer.  Dr. Geyer came in and we scheduled appointments for the next little while: Neuropsych, OT, PT, Hearing, Endocrinology...  We will get to see all of the new wing of Children's many times in the next few months.

As per previous MRI's we went away from Children's feeling both satisfied and physically drained.  It was a good day.

Today is Xander's Third year out from being diagnosed.

It has been an interesting few years.  The last two have been nothing like the chaos of the first, but there is still a low simmering worry that pervades your thoughts more often than you would like.  It is interesting how when things seem normal on the outside people discount previous history and think everything is OK and that we should be 'over it' by now.  I would say that is not the case since every day has the potential to unveil a new worry.

Part of that could be that we are coming up on yet another M.R.I., which is always a time of increased anxiety.  Plus there is being part of other families lives that have had to go through re-growth and therapy again, diagnosed with increasingly poor news, and even the passing away of a young life.  How can you be a part of such pain, suffering and sorrow and not be affected?

Not to mention that we had just heard that Mom's Grandfather passed away after being hospitalised for a length of time.  Mom's Grandmother, Dad, Mother are all in the front lines having to deal with that fatal reality.

All that being said, tonight however, we celebrate Xander's strength and perseverance.   He has worked hard to overcome some hearing and speech deficiencies, and has had a huge smile throughout.  His sense of humour is blooming and he makes us laugh all the time.  He attacks life with vigour and leads us to do the same.

Tonight we will celebrate with some close friends, and Baba.  We will toast Xander's health with some cupcakes and revel in yet another day with our little man!

Xander has had a persistent cough for the last little while, so we finally called Children's and made an appointment to get his sinuses checked.

Mom and Xander went in to visit a new department - Otolaryngology.  Definitely one we have not been to before.    We were supposed to have had a Sinus CT before, but that fell through, so we thought that this would be fairly technical.  However, it was a fairly standard visit.  The doctor checked his ears, nose and throat.  Then he indicated we would be starting at the bottom, trying meds first. Xander did have a double ear infection.   He prescribed Loratadine, Antibiotics, Singular and Mupirocin (nose swab) to treat the Sinusitis and the infections. 

So Xander was on a heavy med schedule again for the next month.    The infections went away, but the cough remains.  It concerns us since we remember how we first noticed Xander's tumour - coughing, gagging and finally throwing up.  So a persistent cough is always a concern. 

So we will be taking Xander back in to see what the next step is for his cough.

We also have to take him in to check out the top of his left foot, which has a slightly larger growth of  bone that his right, which may explain some of his tenderness when walking and running.

Also, after vigorous exercize, like running, we find that he goes into coughing fits so we also need to see if this is related to the Sinusitis, or if it is a form of Asthma, or something else altogether.

As usual, it will be a busy New year with no shortage of visits to the Doctor and related specialists...

Xander, and his family, went to the theatre to see their first full-length movie.

We all went to see Chicken Little.  It was a joke at first since Mom and Dad said we wanted to go see the movie and Xander and his brother kept saying, "It was too scary".  Finally, when Dad said it was, "Too scary", the kid's said, "No, Chicken Little is funny."  So after more than a few exchanges we were out one evening on Family Day and asked if they wanted to go.  They said, "Yes", so we went to the theatre fully expecting to be leaving early.

Mom bought some popcorn and we made it though the whole movie without incident.  At the end of the movie Xander turned to Mom and said, "Thank You, Mom!"

It was a nice evening and everyone had a fun time.