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!

What a DAY and a HALF!!!!!!!!!

What a day and a half this has been!!!!!!

My Alex is so extremely disappointed that she had to hold back the tears this morning. She went to Quinn's Hemophia appointment with me. He was wondering why she was in the truck with us! She looked at him when the nurses came out and told him. He clearly was overjoyed. The nurse tactfully broke both of their hearts and told that they since they werent siblings that she might not be a match for him and that she had to be 18 to do this on her own. I gave consent but it was not ok yet. Quinn told me when we got to the truck he was so mad that they turned Alex down that he wanted to say a few choice words but held his temper for me. I am sure glad that he did.

What we found out today was that they would draw a few tubes of blood from him and examine it for about 7-10 days giving him 10 points and then going to the donor list after that time. Anyone who is registered with 8-10 points potentially could be a good match for him. In addition, they also look at frozen umbilical cords that potentially could be a match for him. If he receives from a live donor the process will be harder on him than if it were from an umbilical cord. The good news is that they do a worldwide search for him! So, as soon as the transplant is complete it is on its way to Kansas City. Giving us 24-48 hours to be prepped and ready to begin the process! His worst fear is losing his hair!!!! A cute little black eyed guy like him could hardly look "Uncute" Right! Just say'n :) In fact we do have an appointment on December 21st with the Hematologist and then the Transplant Dr will come in at that point and spend about 2 hours with us describing the process to us. My wonderful sister in law works upstairs in the Genetics Lab and will come down to join us. She can understand alot of the medical terms that I dont and I will gather off of the GT piece and blood drawing/chemo/radiation that I am familiar with. My dear friend Taylor's Nana went through this process with her so have a familiar memory of some of it. The process may have changed as this has been several years ago.

Tonight, we celebrated Janie's Gotcha Day and Alexandra Gotcha Day which is tomorrow. She has been with us for 10 years now!!!! Another wonderful day to remember as always!!! Before dinner was done Quinn turning around with a gushing nose bleed!!!!! All I could do was tell him to run to the bathroom for kleenex's and scream quietly. He has had a nose bleed now everyday for the past month or almost I believe. Minimum of 3 per week. At this point he is still bleeding pretty hard. I fear getting him platelets as this could be the time that he reacts poorly to them and they wont work. Last time was not successful at all. So, I fear the worst! Today I did have his Hemaglobin checked due to the massiving bleeds he has had since his infusion of the Units of Blood. He was at an 11.0!!!!!!!!!!!!! Wow, it hasnt been that high for a long time. I was very pleased. However, we need to keep it up!!! Alex is doing her best to keep Quinn occupied tonight with her new Electronic Monopoly Game that she scored from Nani and Papa. They gave her a Wal Mart Gift Cards which she loves from them! I think Quinn is enjoying himself also and jumped right into the game with her. Matter of fact I had a tough time getting them to concentrate on the IV. I think he woke up when I infused him in the foot for the first time!!! Unfortunately, the vein blew after I got all of the factor in him! So, I had to poke him again.

To all that have prayed and called about Quinn I just cant Thank You enough!!!! Words from great friends and family are so encouraging. I am just sad that my Brian (brother in law who passed away 3 years ago suddenly) isnt here to share all of this with and lean on! He was such a rock I tell ya and loved him tremendously! He was one of those guys would could make you laugh in the middle of a crying spell or just send a text to let you know he was there with you with things were falling in all around you! I have to believe he is in Heaven shining on my with his strength!

Happy Gotcha Day to Janie and Happy Day Bleeding Free For QUINN!!!!

YEAH!!! On both counts. Happy 8th Gotcha Day to my little Alice Jane. The day that I got her she clung to me at 10 months old with both arms wrapped around my neck, head at my ear and her feet on my shoulder looking like a Monkey!!! She was holding on for dear life and we have been stuck every since. She is attached to Momma's hip like glue and cries if I give her the look. Actually, if my children were not Asian they would all have a large piece of their Momma in them! Lets see - Stubborn-Super Temper - Sensitive - Curious - Brown Eyes and Hair - etc. I love my children greatly and feel so blessed to have them all be a part of my life!! God is Good!

Last night at bedtime Quinn developed a bleed. Once again, I immediately started and IV and issued all the necessary medicines along with packing the nose. I was fortunate enough that he stopped bleeding during the night and was able to clip the blood clot from the packing! He wanted to go to school so badly. Since he wasnt bleeding I let him. To the other children it was not noticable.

I had requested a CBC on Quinn when he bleeds so that we can follow his hemoglobin more closely to ensure that it does not fall to low. This afternoon I received a call from one of our favorite Hem/Onc Nurses Judy to tell me to be prepared because they were going to draw a few extra vials of blood to start testing it for the BMT (Bone Marrow Transplant) and to see if there is a match out there for him. If you have not signed up on the Bone Marrow Donor List.... I urge you to do so today!!!!!! They told me that it doesnt matter the make up of the person but sometimes Asians are a better match but not always! So at this point no one is knocked out. I fear for my sons life and this seems to be the best chance at keeping him alive and possibly curing the Glanzmanns Thrombasthenia!!!!! This would improve his quality of life most importantly. As the nurse put it me, it would also improve mine too...... At this point, my son is what matters. I am old (45) and my job is to take care of my family! I know fun .... He doesnt! We currently have an appointment set up for December 21 with the Hematologist and am hoping we can fit it in the same day with the Bone Marrow Transplant Department. Please pray for us and a donor to be on the list next month!!!!

GT On the Move!

It has been a while since I posted since bringing Quinn home. So many things have happened since the last date. I have learned alot about QT and educated my son as well. I am not placing IV's in his arm and infusing Novo Seven (Factor 7) as needed and packing his nose. Finding new ways each time to try and eliminate as much of the bleed as possible. Over the past 6-9 months it seems that Quinn is becoming worse and more severe and bleeding more often. At this time, he seems to be building a resistance to the Platelets as well as developing reactions to the Platelets and Blood Products. At this time, our best option for life is to seek out a Bone Marrow Transplant. It is a rough and hairy process!!!! However, would potentially cure the GT and give him a chance at a normal life. Hopefully, the end result would be a good one for us. It does not always turn out that way. The end result is that sometimes it can be fatal with the extreme dosages of Radiation and Chemotherapy that come with it! I have started the research again on it and am waiting on an appointment. Our team of docs flew to Chicago on Thursday to get some information. I will be anxious to hear from them.

Quinn has been selected as a "Make A Wish" candidate. Of course his most wanted wish in the world was to go back to China. At this time I dont feel like this is the best health decision for him with the types of treatments that they provide. In addition, if I remember correctly I would not be able to take his meds across the international lines because of the blood products. So, his wish has been changed to meet Selena Gomez or have a new home or build on to what we have so that the family can enjoy a fun game room. I sure hope that he is able to carry out one of these ventures. If he does have the Bone Marrow Transplant this would be awesome for him as he would be confined to me and the home for a long while. He will probably get sick of me! :) LOL

I will try to coninue to update this BLOG in hopes for prayers and a bone marrow donor to come forward to save his life!