What a Wonderful Day This Has Been!!!

Today was the day! I have been so anxious and nervous about this appointment today and have to admit that I felt that there would not be a donor for my Quinn. Alexandra wanted to join us also which was great! Auntie Lorrie went to understand the specifics of the chemical make up of the body and I was the person who understands Glanzmann's like the back of my hand. So, together we made a great team. Alex took notes on the Tablet and played her DS. Quinn was leaving it up to me and played his DS the whole time. It was a long appointment - 3 hours.

First we briefly met with the Hematologist and her Andrew follwed by the BMT team. What a nice group of people they were and very down to my non medical level. We went through the specifics and I asked several times about a donor. Lorrie said I was about to turn purple with nerves! But I survived :) Finally, they told us that there was a "Live Donor Match" for him that they had been trying to contact for a physical and blood draw. But no luck. Next, we have an Umbilical Donor who matches 5 out of 6 items and a third Umbilical Donor that is currently being tested. The results from #3 wont be in for about another week or so. They were going to try to continue to contact the "Live Donor" for a few more weeks. So, I can expect that we will hear soon. My gut says that we will receive and Umbilical Donor. Which is perfectly fine with me. From what I understand there is more manipulations that can be done than with a live donor. As they say it is all a balancing act and things will go wrong but most of the time can be corrected. And of course there is a chance of the worst case scenario. At this point, I believe we have made the right decision and am hopeful that we can get this going soon before he needs more platelets, as he will need some during the process of the transplant. It is unclear how much the platelets will be of benefit to him. Without them we are out of luck literally!

Thank You so much for all of the prayers everyone! I understand that this has to be in God's timing but I would very much like to see the timing be in our favor! Please continue to pray for him and see him through this process. The thought of seeing my son play football, basketball, baseball, jump like a monkey, be a doctor are all things on my mind that I would love to see him involved in. His Daddy and Papa would be so excited to see the sports come out in him. He is such a competitive fellow!!!! Wow, we may see a side to him that we have never saw before ... Go Quinn!!!!

AHHH ... A Semi Quiet Day!

Today was somewhat quiet. At least no major bleeding which is fantastic! Quinn has lost 8 teeth in the past month and has been a challenge. Two days ago he lost a molar and is bleeding slowly off and on. Ice Cream with a soft cone has became a danger to the poor guy. He came to me tonight with both sides of his mouth bleeding and packed. Luckily, his oral meds helped and all is well at the moment.

Janie was home sick today with a tummy ache! Poor little Tiger. The tummy stuff has been horrible this year. And unfortunately, mine didnt feel so well either. The meds (oral chemo) that I am on for RA brings my immune system down a touch and tend to catch things a bit easier. But, am back on the move again! Now to get Janie up and going will be nice.

Yesterday morning quite early the kiddos and I bundled my little Mia up to take her to the vet for a laser declaw and shots. Picked her up this morning and was so glad to see her. She was terrified at the vets office and really gave them a run for their money. Honestly, I think they were glad for her to go and she was glad to see me. They restled her so much I think her little 8 lb. body is wore out and she has slept most of the day or has wanted me to hold her. Poor baby wouldnt eat so what do I do .... fix her an over easy egg and dipped my finger in to feed her ..... I got laughed at but did get her to eat some! I love my kitty cats! They never talk back :)

Yesterday I spoke to Love Without Boundaries, which is how I found my Quinn. They are a non-profit organization that assists children in China with many types of needs as well as Foster Care, Cleft Lip Homes, Therapy, etc. They are wonderful and I truly mean it. The people working there are volunteers and work so hard for these children. Quinn was lucky enough to meet some of these wonderful people after he came home from China. And of course they remember his sweet little face! LWB was kind enough to post on their Facebook site about Quinn and try to build awareness regarding Bone Marrow Transplants. Thank You from the bottom of my heart for everything you have done for my son!!!!

I am anxiously awaiting our appointment on the 21st. Glad to check another day off of the calendar everyday!!!! Praying for a Seasonal Miracle. While most people are counting the days down for Christmas, I am counting the days down for our doctors appointment. It is depressing somedays and my mind wanders about what irrational/rational move I will make if there isnt a donor available. I think I have a few good ideas up my sleeve and hope that I dont have to go there. Honestly, I dont want to think the worst but it is so hard to keep positive at times.

Remember to register to be a Bone Marrow Donor at "Bethematch.org" It is very simple and only takes a few minutes. Asians are the best match for him typically, but that does not rule out anyone from possibly matching him.

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!