Feeling very, very blessed......

I don't even know where to start. I am feeling so very blessed right now. My heart is so full of gratitude and thankfulness for the Be a Match registry and all of the willing people who are willing and able to donate.  Yes, we got some news on the donor search..... That info coming up soon.... But lets start off with the bad news.

Ariauna needs a transfusion. Primary Children's hospital called first thing this morning and her lab work was in and her Hemoglobin is 6.5 which is as low as they (Minnesota Hospital) want her to get. Remember that Primary Children's hospital usually only allow them to get to 7.0.  So we have an appt on Tuesday to have a red blood cell transfusion done. I am also very grateful tonight too, for those who donate blood. This will be Ariauna's 4th blood transfusion. I can not thank people enough for something that may seem so small to you, but is so huge to families who are fighting a disease.  Just for a complete update and to let any new visitors to the blog know that usually on a healthy person, anything under a 20 Hemoglobin they would transfuse for. However, because she needs a bone marrow transplant they try not to give them any more blood transfusions than they have to because then her body is dependent on someone else's blood.  Her Platelets are now 27,000 so they dropped again since last week. (Again, normal platelets are anywhere from 150,000 to 400,000. So she is very low. Platelets actually only live for about 72 hours so it is very normal for the platelets to change and go up and down all of the time.) Her ANC which helps her fight infections along with her platelets is back down to 500 (anything under 1000 makes them very nervous and anything under 500 is critical. She is right at 500, so that is again when they start deciding if it is time to start treating her with medicine to help her body fight infection. The medicine is something she will be on no matter what when they do the chemotherapy and her body becomes immuno compressed).  So the big question from Primary Children's was do we have a date to go to Minnesota. If we were going really soon, they may hold off on the transfusion so that she is really good to fly, but since we do not have a date they will go ahead with the transfusion and just pray that her blood levels stay up while we wait to get a date.

Okay now on to the good stuff.  I actually put a phone call into the Search Coordinator at University of Minnesota today and of course she is out of the office. Ugh!  So I left a message with her co-worker and asked her to give me a call back. I went all day wondering and worrying about it when I finally got a call about 4:00 p.m. from them. I was so grateful I did not have to go through the whole weekend wondering and worrying about what was going on with the search.  They told me that they had gotten Ariauna's file off the Search Coordinators desk and on top of the file was a note saying that they would be further pursuing the donor first thing Monday morning and that they would be requesting it all be done ASAP. I immediately said to her, "Does this mean that everything was good on the HLA typing on the labs?" and she said yes. The term "Pursuing the donor" is only something they say when in fact the HLA typing has been done and is a good match. My heart was so full, I was over joyed and could have just sat and cried....Happy tears of course. We had a very lengthy conversation and I could feel myself just grasping for more and more information. It almost felt like I didn't want to hang up the phone because I wanted to keep talking to her about it all.  I am sure you are all asking, so when do we go???   And the answer is, we do not have a date. And even though every thing was good with the HLA typing with this sweet donor, it is still not finalized.  So we still need lots of prayers.  Please, Please, Please say prayers for this sweet donor. I wish I could tell you who to pray for, but I can't. But I am sure Heavenly Father knows exactly who it is we need to be blessed. So what now??  Basically first thing Monday morning the Search Coordinator will get in touch with the donor's representative and will send them a letter saying we would like to further pursue the donor. In the letter it will state they want a physical examination done (Now this is not just some small physical, this is a huge physical that will completely check everything on the donor, EKG on their heart, ultrasounds on organs, etc.) by a specific date. The letter will then state that if clearance is given from a doctor on the physical then they want the bone marrow harvest to be done on a specific date. (I am not sure what those dates will be until I talk to our actual Search Coordinator, hopefully on Monday.)  So hopefully the last nervous part as far as the donor part is concerned is if the donor will get clearance from a doctor to proceed with the donation. They have said that 90% of the time the physical comes back fine and things continue. But there is that 10% chance that the donor may have some wierd surprise health issue come up that they are not aware of. That is why we still need lots of prayers on Ariauna and the donor's behalf.  So what this means for us is, be ready. If they get the clearance all is well with the physical then they said we would have approximately 5 days to get there to start her two weeks of full blown out patient work ups. This is very, very, very exciting news. I can not even express how grateful I am for all of the prayers that have been said in our families behalf. I am so grateful for each of you who are reading the blog and who have continued to pray for our family. I can definitely feel the prayers and I know this is only one small way they are being answered. I have felt my Heavenly Father by my side through this journey and I know he hears and answers prayers. Thank you so much for your love, concern and friendships. That is what keeps my head high, my heart full, my spirits up and my faith strong that things will be okay.

Also I have had several people ask and I finally got the answer today on if we will ever get to know who the donor is or meet the donor. The long and lengthy answer is maybe. In the United States the law is that they can not give you information on a donor like this until a year after transplant and then it is up to both parties what information they want given out. So it depends on if the donor is from the United States, if the donor is from a European country than their laws are different and some countries it is two years after transplant. We will probably be given very basic information once the donor is confirmed. We will most likely only be given the information, what country they are from, if it is a male or a female and maybe the age of the donor. They told me today that the donor they have right now has probably already been given information that they would be helping an 8 year old girl from the United States. Between the time the transplant is done and the first year we are allowed to write letters to the donor and the donor can write letters to us, however we can not give out any information such as last name, state, what hospital and State the transplant is being done in, etc. We are only allowed to use first names, etc. But we are able to write letters, send cards, etc. We then give it to our search coordinator at the hospital who then sends it to Be a Match, who then forwards to the donors representative and they forward it to the donor. It is a huge process, but a very important one. They said they love to see letters and mail being switched between donor and recipients. Then a year after transplant (or two if their country has that law) they will send a letter to us and one to the donor asking if they would like to be in contact with each other and if so they ask what personal information they can give to the opposite party (name, address, phone number, email, blog site, etc.). At which point, they would forward the information allowed to the opposite party. I am grateful we will be able to have some contact with the donor and can not wait for the moment I can thank who ever it might be, that is willing to help Ariauna have a longer chance at life.  My heart is so full right now and I wish I could meet this wonderful person now and express to them my gratitude. I can only hope that who ever the donor is will know in their heart how grateful our family is until we can start keeping in touch.

Hopefully this post helps to explain things a little bit and where we are right now in the process. Again we are very grateful today and feel so very blessed. We will anxiously be awaiting to hear the news on the clearance of the physical. Just so you all know this could still take 2-4 weeks for this all to be done. Each step of this donor process takes time. It is hard to sit and wait, but it is a process. They have to go through specific representatives and sometimes several to get this request to the donor and then they have to give the donor time to get an appt,  time to get in to have it done, then it takes time to get the results back, and then it has to go through several people to get back to our search coordinator. All I know is that University of Minnesota is ordering it as a priority and that we need it all done ASAP for Ariauna. Hopefully, it will all go quickly and smoothly. Again, thank you for all of the love and support that we have been given. Please continue to pray for Ariauna and this amazing donor who is so willing to help our family during this difficult time. I will hopefully be on to blog about our week and post some pictures in the next day or two.