Update on Casey's Treatment Plan
9 May 2017Hi everyone and thank you so much to all those who have donated to Help4Casey. Your kind words and support is much appreciated so thank you.
Just a quick update on our plan and Casey's condition. Casey's current treatment plan, in lieu of Solaris, is infusions of Fresh Frozen Plasma (FFP) which is done at Waikato Hospital. At the last consult with the doctors we were advised that FFP has proven to be ineffective as it hasn’t managed to get Casey into remission so the decision was made to stop this treatment and monitor Casey via blood tests. Casey appears to be as well as she can be expected at present albeit with a few bumps along the way, i.e., being completely wiped out at times with no energy due to low haemoglobin levels. Thankfully even though Casey hasn’t reach remission she isn’t in the acute phase of this awful disease either.
We have been advised that paying for Solaris at this point without full funding for an entire course of treatment would be unwise so we therefore play it day by day in the hope that the disease doesn’t rear its ugly head and lead us back to hospital for more intensive treatment such as dialysis. When the consultants advise us that paying for the full course of Solaris is the absolute last resort we will do this and deal with the fall out at that time.
We know of at least two other drug companies in trial stages to compete against Solaris and that other forms of treatment are being investigated. The hope is that these will eventuate soon and the current $400k p.a. treatment can be reduced to a more manageable cost but we are aware that any alternative treatment will still be very expensive. If an alternative treatment does become available which is just as effective and cheaper, donations to this page will be used for this.
For now, every day is precious and not taken for granted. Again, thank you to all of you who have supported Casey via donations, organising fund raising events, kinds words and gestures. All our love and thoughts are also with other families dealing with this disease and other rare diseases not supported by the governments health funding.