HLA Typing COMPLETE!

We were finally able to get the HLA Typing COMPLETE for each member of our family. It was QUITE the ordeal! For starters, we arrived some time around 11. I got a bad feeling when the gentleman that checked us in told us to "get comfortable as we were going to be there A LONG TIME!" True to His word we were there for about 5 hours! Apparently paperwork for HLA typing for a family of 7 is quite extensive. Lots of waiting around, and waiting... sheesh, you'd think we were The Duggar's! :-) ( we had to actually be admitted into the hospital, not the simple quick and easy blood test I originally thought it would be)

We told to go to a special part of St Joseph that deals with Donor Type issues.

I was abit irritated when we arrived. One employee took one look at us and said in the most irritated, inconvenienced, exasperated voice he could muster. "WHAT! YOU MEAN WE HAVE TO DO ALL OF THEM? The WHOLE FMILY? There's SO MANY OF THEM! (along with a sighing and eye rolling) We were of course within ear shot. I'm thinking 1) Isn't it, you know.. your JOB to take blood? It's what you DO FOR A LVING. What does it matter if we are all from ONE family or from several. Just take our dang blood without complaining for Pete's sake! 2) I'm thinking, in THIS economy do you really want to have such disdain for the people that are providing yo with work? That was so irritating and really concerned me about how the rest of the procedure would go.

Fortunately all went really well. I wasn't really up for "why aren't the kids in school." Honestly, I didn't know how the kids would react to it all and wanted to see how well they would do before I mentioned that we homeschool. Gotta represent ya know! :-) Once we got inside we had the NICEST sweet nurses/phlebotomists ever. They all came in to compliment how well teh kids did. So many of them seemed quite amazed at how many children we had and how well they each behaved. We heard over and over again how impressive they were. ( it helped that I gave them all candy during the procedure) My very sensitive son that I expected to wig out did great, all of them did. I was most impressed with Anaiah as she has tiny veins and I watched as they rooted ALL around her arm looking for the vein. I wanted to totally GAG, but she was just her normal smiley self.

The only one who cried was Hezekiah. He really took to the nurse ( she was pretty) and he smiled and smiled at her flirting and smiling.. His little face showed concerned when she put on the mask. HE WAS LIKE " HEY WAIT AN MINTUE.. WHAT'S GOING ON... Then she pinned his little arm down and he all out panicked!


Here you can see him look totally betrayed almost as if to say " I thought we had something special! Elijah does great here. I wanted to take photos of everything because if we have a match it really will be special. I told them that we are all taking one for the team. TEAM RODRIGUEZ! :-)


Huatzin was the only one who complained. He doest like needles. I told him he needed to man up a bit. I had to get my blood drawn all while holding a very angry crying baby that was also trying to rip the needle out of my arm to taste it. As we were leaving the nurses were full of raise for the kids and 1 lady that had to know Jesus told me that my family/children were such a blessing. I then felt comfortable telling them it was because we homeschool. :-) To which they all agreed had to be the reason. ;-) ( could ALSO be the candy! ) We had a couple of other issues/adventures, such as losing keys and searching all over CHOC for them. Getting Josiah's blood drawn and realizing they didn't draw enough. (they wanted us to go back.. no can do! ) having a REALLY rude receptionist as I was trying to figure out how to drop off the lab( I carried around blood vials with 5 children alone while Huatzin went to look for the keys and was terrified I'd break them. For the life of me, I cannot understand WHY anyone that dislikes people would get a job at CHOC of all places. I almost want to tell her that she might consider a job at the DMV... where people actually EXPECT you to be rude and to be treated poorly.. but CHOC seems like a place you'd work if you generally LIKE INTERACTING WITH others! ;-) Thankfully other employees were much more helpful. All in in, the whole thing was covered in prayer and went better than expected. We were tired but happy. Thank you for your thoughts and prayers! Alida & Fam

Jojo Update 2/20/10

My awesome friend Brenda went with me to take Josiah to see the doctor. She helps prick the doctors mind to think of every possible question to ask regarding treatment for Josiah. It was an especially important appointment. We finally got results of the bone marrow biopsy & aspiration. ( did you know that they drill a hole to get that ginourmous needle into your body? the needle is HUMONGOUS!!! Do you know when they do it to adults they keep you awake! MAJOR GAG!! )

Each doctor and nurse practitioner seems to have a different opinion on how Josiah is doing, what to do, and when to do it. We were told his bone marrow cellularity is up... almost 30%. To be Very Severe it would need to be around 10%. To be normal it would need to be around 50-70%. In November he was 16% so an improvement. Aplastic Anemia has 3 levels, Moderate (MA) Severe (SAA) and VERY Severe (VSAA). At the moment, Josiah is Moderate Aplastic Anemia. The nurse practitioner seemed to take the approach of "oh well, let's just keep transfusing him as he's not low enough for treatment." He has needed transfusions every 2-3 weeks. THIS ISN'T NATURAL, or healthy! Consider this.. "My son cannot survive without getting blood and platelet transfusions. How is this OK? Here is where a second opinion, me calling an expert in the field of Aplastic Anemia will come in. I will make my trip down to UCLA ASAP. When the actual DOCTOR came in I asked "so what are the negative consequences of receiving so many transfusions?" ( I mean come on, there has to be SOME consequence to receiving bi weekly transfusions) I'm REALLY GLAD I ASKED as she mentioned that the more transfusions you get, the more you antibodies you get from the wide range of people who donate the platelets. So if He's received 20 transfusions of platelets and each of those people have antibodies to certain things, then JOSIAH gets all those antibodies. The issue comes if/when he needs to get a bone marrow transplant. The more antibodies he has in his system and that he's exposed to, the more of a chance his body will reject the donor marrow. (Graft vs Host Disease) If your child has just been diagnosed with a Bone Marrow Failure Disease, please take this into serious consideration!

So, it is much better for Josiah to get platelets from only 1 or 2 people than it is from many. There are people who have offered to donate platelets for Josiah. We will need to accept the offer as it will give my son a better chance at survival than if we continue to do what we have been. It can NOT be a member of our family because if we donated the body would become familiar with our DNA and might develop antibodies to our DNA when /if he receives a BMT! (Bone marrow transplant) It gets tricky as we'll need to time it around times he is more likely to need a transfusion as platelets only last about a week. So we are kind of at the wait and see if he gets better or worse phase... yet AGAIN. They did mention getting the others kids tissue typed for a BMT just in case.

One really weird thing that happened was that me being the adoption advocate that I am, I was trying to persuade my friend who loves all things medical to foster a medically fragile child. She is a great mom and so loving and not at all freaked out by medical stuff that would gag most people. I told her how this whole thing with Josiah makes my heart break and more tender for those without parents and that have a chronic or life threatening diseases. Just then a little boy walks by and I immediately recognized him. He is one of the sibling sets i have PRAYED for! HE and his brother ages 4 and 2 are from the heart gallery. I have prayed for an adoptive home for them and asked the Lord to open doors if we should adopt them. WHAT ARE THE CHANCES THAT I WOULD PRAY FOR THESE BOYS AND THEN SEE THEM and recognize them in the same section of CHOC where my own little boy is getting treatment! A HUGE God thing, so either the Lord wants them in our family or we are to fervently continue praying for a home for them. Aren't they CUTE!!!

More Labs at CHOC/Interview with Josiah

Josiah went in for labs and will have a bone marrow biopsy & aspiration on Thursday. He also needs one final test to determine which treatment options we will do. Then comes all the research of the pros and cons of all the treatment options and deciding which steps to take. UG. With the state of Josiah's health and the treatment he's had so far, we need to get this done quickly. To many transfusions have negative consequences, and he's getting up there. It is serious and things may or may not work out the way we hope they will. But, It could always be worse. My perspective is that through all this we know Christ has a purpose for all this. I can't complain. We have access to treatment many in the world don't. I am grateful, privileged and BLESSED! We may not have much, but I am not living in the garbage slums of Kenya or the tent cities in Haiti. We may be broke but we are fed and clothed. I am praying for discernment and wisdom in the upcoming days of making the right medical decisions. I am praying for peace and for provision for our family. We are fervently praying for work for Huatzin. We are also searching for Aplastic Anemia Support Groups for those raising children with the disorder to help guide us in research and decisions. ______ *You don't need to see the way if you follow the one that is the Way.- Author Unknown *Nothing takes God by surprise. He knows the future and can therefore guide us through its trackless ways.-- W. T. Purkiser *Wisdom is, and starts with, the humility to accept the fact that you don't have all the right answers, and the courage to learn to ask the right questions.-- Author Unknown