The past few weeks have been a blurr and seemed have to have go fast yet stand still for us! I have been down with double pneumonia and refused to go to the hospital because of the need to be with Quinn. I am so used to him always being on my coat tail it would be severe "separation anxiety" for both of us I am sure! Yet throughout the Pneumonia I still managed to care for his bleeding and all needs were met. Whew!
We managed to miss Thanksgiving again for the 4th year in a row. It is traditional for Quinn to bleed on Thanksgiving every year. This time he literally started at 12:01am!!! Wow, boy you have some timing. It was super sad to miss the festivities and the sickness flowing around
Quinn's spirits have been high despite the mentionings of the Bone Marrow Transplant. It is so hard on me .... emotionally and physically. I am trying my best to keep a positive attitude that they tell us that they have a match for my little "Asian Dragon". But the reality is that Asian donors are harder to find a match for. Quinn mostly understands what is possibly going to happen and will learn quickly as it goes on. He must seems to roll with the punches.
If you have not registered at "Bethematch.org" or "Marrow.org" please do so today!!!! It could be a matter of life or death to someone or their child. You must be 18 to be a donor.
With Quinn having Glanzmanns Thrombasthenia what this would do for him is in a nutshell give him a chance to grow new platelets that would allow him to stop bleeding on his own. No more harsh medicines or ER visits, etc. Sounds easy but the process will be a long hard road. There are so few patients out there with Glanzmanns that this procedure has not been done thousands of times. There are approximately 100 people in the US that have had this done. Our problem at this time is that he is not reacting favorably to the platelets and they seem to not be working so well. The worst thing to a mother/family can happen at that point! I believe you get the drift. So for my Quinn I feel like we have no option but to move forward.
We are anxiously awaiting news on our appointment December 21st!
If you believe in the power of prayer ... Please pass the word around and pray very hard for my 10 year old Quinn Michael FuQi Roberts. He is so proud to have a family, home and most of all a Nani and Papa!!! Not just someone that has that name but a real one that he can touch and feel and loves him back unconditionally! My son deserves this chance after all that he has been through in his short little life!
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