Time for that blog post....I want to thank you for the emails, facebook messages and twitter DMs asking how things are for my family because you noticed my blog has not been updated like it normally is. I have been trying to put into words for the last 7 months what we are going through with our daughter.
On December 20, 2012 my daughter was diagnosed with Advanced Crohn's Disease in Toronto while we were living there. You might remember my post from December 2012. We have now moved back to the London area and I am so grateful to be here and have the support of friends and family to not only help with our younger daughter but be there when I need a shoulder to cry on as we focus on our middle daughter and her health concerns.
|Taken in April 2013 at Cityline (before losing 27lbs)|
One of the main reasons I have not blogged about what my daughter has is because my daughter is not a child who likes to be in the spotlight at all. She is our quiet, confident, beautiful daughter who just loves school, reading, taking pictures, hanging out with friends, swimming and anything Doctor Who. She is house bound and has been now for a few months, she passes her time here at home watching Duck Dynasty for her "duck" therapy as I call it, it puts a smile on her face no matter how much pain she is enduring at the time. Today is a mommy therapy day as I would call it.
For seven months we have been riding the Crohn's Disease roller coaster as I call it. In December when our daughter was originally diagnosed with Crohn's Disease they put her on medication and we were seeing some positive progress. She was able to walk again and stay awake long enough to do some family things. Her weight even got up to 118lbs. All that changed at the beginning of April 2013. When she dropped 13lbs in one week. We tried to get into her doctor in Toronto but could not get into see him until some time in May. We were moving back to our home town on May 2, 2013. So Alyssa thought we should wait until we got back home to see the doctor.
We were very fortunate to be able to go back to our original doctor in May 2013 who had no clue what Alyssa had just been through in the last 7 months. We brought in her complete medical file from Toronto and his face just dropped he could not believe what she had gone through. He did make the decision to get her into the Crohn's Clinic in London since her case was very complicated and so severe.
While in Toronto we were told that Alyssa is one of the worst cases of Crohn's they have ever seen, to be honest I thought they were just exaggerating so we would get the seriousness of her illness. Fast forward to July 2013 when we finally got into the Crohn's Clinic in London and we are told the same thing that Alyssa is the most severe case of Crohn's Disease they have currently in their clinic in London. I thought oh wonderful we hear this again and we even heard the nurse warn the doctor before he came in saying I am going to warn you she is really, really bad. The good news is they had someone who was just like Alyssa and she no longer looks like Alyssa meaning she is at a healthy weight and able to do things again.
Alyssa's current treatment is going to consist of experimental case study medication as soon as she passes the screening process. It seems like the screening process is taking a while to pass. She is being screened for a drug where she will not get a placebo because it is not something we can risk her getting at all. She needs treatment and the treatment for her to get traditionally is one we can not afford to do. It is thousands a month approximately $4,000 to $5,000 each and every month. I won't go on a vent of my pet peeve with this price tag to get my daughter better so it left our only other option for her to become a test patient.
So that is where we are at this time waiting for the phone call to say she has passed the screening but in the mean time she is on NOTHING as all her other meds ran out not that they were working anyway. As a parent I have been unable to have her maintain her body weight, no matter what we try. Now we have different side effects coming up which is just more symptoms of Crohn's Disease.
As a parent I am living this nightmare 24/7 watching my beautiful girl fad away to a shadow of her former self, knowing there is not one thing I can do about it. I can't take her out shopping as she can't walk that far. We can go for drives from time to time but as with Crohn's Disease you all know that you have to be close to a washroom all the time. We don't get to escape at all and my husband and I are having a hard time dealing with this on a daily basis, I can not even imagine what our daughter is going through.
So to pass the time we play games, talk, share and watch tv the shows that bring happiness to our daughter which at this time are Duck Dynasty (yes we have all three seasons on DVD). We try to keep an upbeat attitude because if you didn't this Disease would just drown you.
Again thank you all who keep inquiring about my daughter and what is going on and asking if we are all right and if we need anything, your love and support means more to use than you can ever know. Please hold your family tightly and give them lots of love. Time is a precious gift use it wisely.
Previous posts about our Crohn's Journey:
My Christmas Wish - December 2012