The Magic of Home

Nevan has become a totally different child from what we have come to know these past 8 weeks!  He has turned back into the Nevan we all know and love!  Smiles and laughs all day long... no more long naps just to pass the day.  Video games, books, activities, full meals and even a little play time outside!  Nylah still pesters him incessantly, but now he pesters her right back... mostly with the old "I'm not touching you!" with his finger an inch from face! It is the Magic of home. :)

A good contribution to this amazing change in behaviour is the fact they have stopped his Chemo for 2 weeks to give his body a break.  Next week we get right back to it.  We recieved our calendars for the next few months.  I always understood that once we finished the intense induction phase, we would go onto a cycle of once a week clinic visits and chemo once every 3 weeks... not so.  Next week Nevan will be sedated twice a week for 2 weeks, for his CNS Therapy and then he will go into clinic every Thurs and Friday for Chemo until December... or at least that is the last calendar month we recieved. 

This past Thursday we went to clinic and recieved the results for Nevan's 'Minimal Residual Test' Results.... they were inconclusive.  I was more than a little upset and angry at this result.  It seems that more often then not, the Drs are coming to us to let us know that Nevan is in that small percentile that has shown inconclusive results.  These were the test results to let us know exactly how 'in remission' Nevan is.  If the number was higher than a certain threshold they would upgrade him to high risk and start treating him differently...now he stays as standard risk as some sort of default.  It's not like I want Nevan to be a high risk patient or to have harsher treatments... I don't AT ALL!  However, I would like to know that we are not giving him these treatments because he doesn't need them and not because they 'just don't know'.   There is a small chance that Nevan does fall into the High Risk category, but because the test was inconclusive and they are now unsure how to treat, he isn't actually getting the treatment he needs.... this is making me very stressed, angry and anxious.  It isn't anyone's fault and the Dr has assured me it is way too early to get upset, but it is what it is... I am furious! They will monitor him closely and he will continue to get bone marrow biopsies throughout his treatment, only time will tell if the path they have chosen will be the right one.

At last counts, Nevan's HB was at a good level and his platelettes shot up from 84 to 347!!  His bone marrow is definitely doing it's job!  His Neutrophils are still quite low and we are hoping they pick up soon so that he can start to socialize a bit more than he is now.  He is looking forward to the fundrasing party on the 29th and asks about it everyday.  We would also like to take him into school once or twice before January. 

The staff at Nevan's school are being amazingly supportive in helping us through this next semester.  We are taking it a semester at a time, but Nevan definitely will not be attending school until Jan.  His teacher Mrs Simioni will be coming to visit Nevan often to make sure they stay in touch and the principal and other home support will come see Nevan whenever possible to help him along in his SK year so that he can move onto Grade 1 with his friends.  A Nurse from McMaster Children's hospital will be coming to visit the SK class at Saginaw Public to help Mrs Simioni tell all the kids why Nevan is not in school and why, when they do see him, will he look so different from them.  They are also preparing a letter to send home to parents so that everyone will be aware of the situation.  We love the people at Saginaw Public School and are so happy that Nevan is enrolled there.  A school and their staff really do help to raise our children and we trust the people at Saginaw whole heartedly to help us give Nevan and Nylah the best upbringing possible! 

Cute Story of the Day:
It was close to Midnight and Nevan was upset because the nurse had to put tape on his nose to help hold his NG tube in place.

Nevan: "Mommy, I don't like this hospital!!!"

Me: "why?"

Nevan: "because I want to go to daddy's back Dr" (Nevan used to accompany Daddy to his chiropractor all the time)

Me: "Oh Nevan, she doesn't know how to fix this"

Nevan: starts crying..."I want Dr Laura to make me feel better!!"

Me: "Dr Laura doesnt know about blood bugs but she does know all about backs! If your back starts hurting we'll take you over ok?!"

Nevan: stops crying.... "Ok, that's a good idea"