Results from the Bone Marrow Donor Testing/Josiah Updates

Update on Josiah!

Ladies, Sorry I haven't updated in a while. I try not to dwell on his diagnoses much but I realize that keeps a great many of you praying saints out of the Loop. Forgive me. I wanted to share. Josiah is doing GREAT! He hasn't needed a transfusion since February! His platelet numbers just keep climbing and climbing. He is not near normal but he isn't transfusion dependent or hospital bound so that works for me! I believe he is HEALED! I believe the turning point for us is we had the AMAZING team from Bethel lay hands on him. We also prayed for healing at an Arthur Blessit event. ( we got to touch the cross that has been ALL OVER the WORLD! I just needed to be around people that had hope the Lord would heal him. I need encouragement that He could and would heal Him. I really feel that the Lord has given me the prophetic word that he would be healed by the simple fact that Josiah means -whom God has healed.

THE RESULTS
As you recall our WHOLE Family went in to get tested to see if any of us were a match for Josiah. ALL SEVEN of us. I was saddened to learn that not one single person is a match for Josiah. Can you BELIEVE it? I couldn't believe it! I actually asked her if she had the wrong paperwork, because I couldn't see HOW it was possible that none of us were a match AT ALL! Each child has a 25% chance of being a match. The only match within our whole family is Canaan with Hezekiah. They are complete matched with each other, but Josiah does not have a single solitary match among any of the members of our family. I am told that unrelated donor matches are RISKY. I was pretty down about it. I felt as though the wind were knocked out of me and was paralyzed by the result. Until I realized that God had removed my plan B. As in my prayers went from "God PLEASE heal my sweet darling son, and if you chose not to, we'll do the Bone marrow Transplant." To the same fervent prayer of desperation that most of the world does that doesn't have the medical care that we do. The "whom do I have in heaven but you," only YOU can make my son well. By the power of your precious blood Jesus please make my son well and cause his bone marrow to function properly and remove whatever is in his system that is causing his bone marrow to be destroyed. Lord restore his body to perfect health."

I am such a planner and a striver. The Lord removed that weight off my shoulders that thinks I can somehow scheme and fix it. I then rebuked the results the doctor gave us. The enemy wanted me to get focused on the fact that he doesn't have a donor when my son is already healed! So we just praise the Lord and thank him daily for doing such great changes in our son and refuse to let anyone or any circumstance rob us of our joy in Jesus. I am overcome with joy thinking about how free we have been though this whole ordeal. My son has only been hospitalized TWICE! This is UNHEARD of in the Aplastic Anemia community. If you read the posts of those on my blog with this disease they are constantly quarantined, hospitalized, sickly. I just read of a sweet boy with AA that passed away. My son is happy, healthy, full of energy and blessed. I do not know how the Lord will use this experience for His glory, but I know he has ordered my steps! I know that there is a purpose for ALL of it and my job is not to understand or figure it out, but simply to TRUST! The Lord is so good! Huatzin has been working for about 1 month now. We are trying to budget again ( which was impossible to do when he wasn't earning ANYTHING!) Now to get back into the Dave Ramsey style gazelle bill paying/saving emergency fund. On to trying to save up for a house AGAIN, and a 15 passenger van or turtletop bus, along with paying off our MOUNTAIN of medical bills. He is able to do abundantly above all that we can asked or think! Thank you for the love, support and encouragement and prayers! YOU and all the saints are what has kept my sweet son out of the hospital! (along with extended nursing) Bless you, In Christ, Alida w5

One year ago today

One year ago today, my life instantly changed forever. My sweet 2 year old son, Josiah Valor, was hospitalized at CHOC. I was told that our son had either cancer or a serious life threatening blood disorder. So much has happened since then. We will never be the same. Thank you all for walking this road of faith and uncertainty with our family. A huge heartfelt thank you for the many prayers on our behalf, childcare help during delivery, doctors appointments and transfusions, the meals, support, packages, homeschooling curriculum, in the mail, groceries, phone calls, texts, emails, letters and cards, christmas gifts for my children, and for sharing our story and prayer needs with so many thousands of people. I know I am terrible about sending thank you cards and haven't always been able to respond to every single email (especially with our previous phone and computer problems) Please don't think for a moment that we are not grateful. Words could not express how much we appreciate each act of love, kindness and encouragement. Thank you so much for helping us through such a difficult year! We pray that the Lord will repay you for all the ways you have helped lightened our load. Though we don't have family to help, we have felt so loved and cared for by the Lord and by all of you. Thank you for your compassion and thoughtfulness.
Love you all, In Christ our Glorious REDEEMING Savior!
Alida, Huatzin, Canaan, Elijah, Anaiah, Josiah Valor & Hezekiah


"The God of all grace, who called you to his eternal gory in Christ, after you have suffered a little while, will himself restore you and make you strong, firm and steadfast." 1 Peter 5:10

" God has a fixed time and an ordained purpose, and He who controls the limits of our lives also determines the time of our deliverance." L.B. Cowman

The little troubles and worries of life may be as stumbling blocks in our way, or we may make them stepping-stones to a
nobler character and to Heaven. Troubles are often the tools by which God fashions us for better things. - Henry Ward Beecher

"Lord, high and holy, meek and lowly, Thou hast brought me to the valley of vision, where I live in the depths but see Thee in the heights; hemmed in by mountains of sin I behold Thy glory. Let me learn by paradox that the way down is the way up, that to be low is to be high, that the broken heart is the healed heart, that the contrite spirit is the rejoicing spirit, that the repenting soul is the victorious soul, that to have nothing is to possess all, that to bear the cross is to wear the crown, that to give is to receive, that the valley is the place of vision. Lord, in the daytime stars can be seen from deepest wells, and the deeper the wells the brighter Thy stars shine; let me find Thy light in my darkness, Thy life in my death, Thy joy in my sorrow, Thy grace in my sin, Thy riches in my poverty, Thy glory in my valley." The Valley of Vision: A Collection of Puritan Prayers

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 medical stuff

It is so hard to know when to take Josiah to the ER, when he is sick or when he is having a discipline issue. When he is ill he is quite a pill. He has been sleeping quite a bit and really clingy so that concerns us. We find out the test results on Friday. D Day. I am having a hard time waiting. Take every thought captive, take every thought captive! They did the HLA typing. Now ...to get the family tested for a possible donor match. Friday will mark the beginning of treatment decisions! YIKES. This REALLY IS HAPPENING!! SO MANY decisions, it's crazy. Praise the Lord that He loves my son even more than I do or I'd be really panicking right now! ;-) Please pray for wisdom and discernment for which doctor and treatment options are best.

I have heard that even with having 4 siblings, he still only has a 30% chance of finding a match. I find that hard to believe. I wonder if we should somehow start doing blood, and donor drives like the many other blogs I have been following. I am in quite a few groups and the homeschooling community is pretty amazing. I'm sure we could get many people to sign up to donate blood, marrow plasma, platelets if needed. So many thoughts, so many decisions. Please pray for us, so many needs, so few resources, ONE huge AMAZING God who cares about even the smallest details and loves us with an everlasting love.
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Quotes that bless me:
You'll never realize Jesus is all you need until Jesus is all you've got. --Mother Theresa

We can do nothing, we say sometimes, we can only pray. That, we feel, is a terribly precarious second-best. So long as we can fuss and work and rush about, so long as we can lend a hand, we have some hope; but if we have to fall back upon God -- ah, then things must be critical indeed! -- A. J. Gossip

God does not give His grace as He gives His sunshine - pouring it out on all alike. He discriminates in spiritual blessings. He gives strength according to our need. His eye is ever on us in tender, watchful love, and what we need He supplies. -- J. R. Miller

The beginning of anxiety is the end of faith; and the beginning of true faith is the end of anxiety. -- George Müller

There is nothing, indeed, which God will not do for a man who dares to step out upon what seems to be the mist; though as he puts his foot down he finds a rock beneath him. -- F. B. Meyer

The flower that follows the sun does so even on cloudy days.-- Robert Leighton

All I have seen teaches me to trust the Creator for all I have not seen.-- Emerson

The task ahead of us is never as great as the power behind us.-- Author Unknown

My son has Aplastic Anemia

OK, this is sort of a vent here.
My son has a serious life threatening disease!!! MY SON has a serious life threatening disease!!!
This is something I never thought I'd have to say. This is something no parent ever wants to hear. Many of us spend our days waiting for the other shoe to drop. We wait for calamity to befall us, and so it seems (and at the present moment feels as though) it has. I am taken aback by surprise, feeling as though the wind is knocked right out of me. My eyes blink away the tears even writing this. I can't believe this is our life now. I have seen alot of things and lived through some pretty terrible situations, child abuse, foster care, living in a domestic shelter with my grandmother, youth shelters being homeless as a teen, etc. They all pale in comparison to this... None of the things I have been through come close to this. My son, my sweet little huggable, exuberant, hilarious, amazing, joyful,silly affectionate, cute, daring, adventurous, spunky little son has a serious life threatening disease.

Here are some facts about Aplastic Anemia.
·Aplastic Anemia is rare with a worldwide variable annual incidence cited between 2 and 6 cases per million persons. Aplastic Anemia is so rare in the US, only about 200-300 people get it every year. We must be "the Lucky ones." Hey with these odds perhaps I should take up gambling! ;-)

·Aplastic anemia and myelodysplastic syndromes are non-contagious blood diseases that can strike regardless of age, gender, race or geographic location. They occur when bone marrow stops making enough healthy blood cells.
·Estimates put new cases of aplastic anemia at only 300 per year and of MDS at 20,000 per year. The diseases are too rare to be reported to public health agencies such as the Centers for Disease Control and Prevention. But AA&MDSIF keeps a patient registry database, one of the few sources for statistical information on the diseases.
·The most common treatments are transfusions, drugs that suppress the immune system and bone-marrow transplants. While transplants have effected some cures, a bone-marrow match is hard to find; even among relatives, an exact match occurs only about a third of the time.
·There is also a chance, that your child may reject the transplant, leading to life-threatening complications. Not everyone will have a suitable donor. This is referred to as Graft-versus-host disease. GVHD is a common complication of allogeneic bone marrow transplantation in which functional immune cells in the transplanted marrow recognize the recipient as "foreign" and mount an immunologic attack. THERE IS NO CURE FOR GVHD!

Because the disease is so rare, I am finding it difficult to find lots of information about statistics on which options are more effective and that have a lower fatality/complication rate. I am also having trouble finding alternative therapies to assist in whichever medical treatment options we will have to choose. We need to find support groups to help us find what is most effective.

We are desperately praying for provision. We have reached the end of our resources and there still isn't any work available for Huatzin or his co-workers. We pray for jobs to start and needs to be met. I am not sure what else to say. A good friend reminded me to take things moment by moment and day by day. I choose to follow the one who formed the stars in the sky, gave life to my sweet little boy, counted the hairs on his cute curly little head and numbered his (and our) days.

Psalm 3:3 "But thou, O LORD, art a shield for me; my glory, and the lifter up of mine head. I cried unto the LORD with my voice, and he heard me out of his holy hill. Selah. I laid me down and slept; I awaked; for the LORD sustained me.

Got a little Aplastic Anemia help!

I called the Aplastic Anemia & MDS Foundation ( http://www.aamds.org/aplastic/ ) as a peer volunteer returned my call. Her name is Leigh and she was SO wonderfully helpful. She really confirmed what I was already feeling. She mentioned to me that we should probably only deal with doctors who are specialists in this field, as the disease is so rare. She gave me the name of the experts in the area of AA(aplastic anemia). Dr David Margolis in Wisconsin and Dr. Neil Young over at the National Institute of Health in Baltimore Maryland. I reminded her that I lived in California. We are in Luck because yet another Aplastic Anemia specialist just happens to be located over at UCLA! Hooray for hopefully not having to go cross country with our family of 7! (Although it seems the few people I have contacted regarding AA have received some type of treatment at NIH in Maryland with Margolis with Dr Young in clinical trials.) We may have to travel yet, but we'll cross that bridge if/when we gt to it. The thought of having to somehow fundraise to get cross country terrifies me! The Lord would of course need to go before us as I get overwhelmed thinking about how the logistics of ANY treatment will work whether in state or out of state.

I asked why I was told to bring Josiah in at tee first sign of a fever/infection. She mentioned to me that she didn't want to frighten me but that this is a very serious life threatening disease and that any fever could be a sign of infection in which case Josiah would need antibiotics and monitoring. She told me that he isn't like my other children where you could wait until morning, or wait until after the weekend. It is very serious. I am glad she stressed that because the doctors didn't really seem to emphasise that at all. ( I did ask our doctor what a fever would be and she said anything over 101.5)

I asked her what parents tended to chose for treatment and she explained that some prefer to do BMT ( Bone marrow transplant as a last resort as there is no cure for graft verses host disease) That a BMT is the only way to cure AA, and typically 70-80% have a response. ATG could possibly put it in remission but that usually it wont CURE the disease. So is it better to risk the chance of a normal life with the cons of possibly GVHD or a safer ATG but never fully recovering? Decisions decisions. :-( She suggested I make a care page for my son to notify everyone of medical updates! It occurred to me that now " I/WE" we're now one of "THOSE PEOPLE." The ones with a sick child. I have always had friends that had those pages and now shes asked me to start one for MY SON! That was a wake up call. After hearing from Leigh it really brought home the point of how serious things are. I was better able to process everything. Now this whole thing seems so much more real. We are seeking Him for help on which steps to take and asking Him to protect, lead and guide us along this path that he has laid for us. For any of you that know someone with Aplastic anemia, here are some links I was recommended.

**** www.marrowforums.org
**** http://www.caringbridge.org/
**** http://www.aamds.org/aplastic For a video of Dr Margolis explaining the disease and treatment. There are 2 interviews ( 1in for parents one is for children, VERY helpful!)
here for parents HERE!!!

www.medlineplus.gov

The National Library of Medicine (NLM) www.nlm.nih.gov/

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