Transfusions & Airsoft Party!

So Friday after seeing the doctor Friday, they drew blood for labs and the PNH test. I kept calling back to see what time they wanted us back for a transfusion for Josiah.
I KNEW he needed a transfusion. I can ALWAYS tell when he needs either blood or platelet transfusions because he just behaves different. He's not than his normal happy content joyful easy going self. He is more cranky, clingy, uncontrollable, unreasonable, irrational, all around difficult, and sleeps alot. The past several days he'd sleep for hours all day long, wake up for a half hour and sleep again for HOURS longer, then take naps throughout the day and still go to bed early It breaks my heart to see him like this. It concerns me a great deal. He also cries and cried about his legs hurting. The doctors mentioned giving his leg a bone scan. Anyway for the PNH test they took 8 yes EIGHT vials of blood. The phlebotomist was all "8 vials? Isn't this kid anemic???" ;-)Turns out they lost the vials! I kept calling and calling and they kept saying they couldn't find the labs on file! ARG! FINALLY at 4 they located them and told me he needed a transfusion. "Great I'll bring him right over then." They mentioned how the Outpatient Infusion Center wouldn't take us that late which irritated the heck out of me since I had been calling since 2 trying to get him over there. They wanted me to come in on a Saturday at 10:30. I responded with NO we made plans and if we have to come in it will need to be earlier. So we made it for 8 am. It typically takes around 3 hours to receive blood. They actually had to admit us into the hospital We were admitted into the same room he had when we were at CHOC on January 8th! Weird. It took way longer than 3 hours. 6 to be exact.At least I got to rest/nap a bit while we were there.


EVERYONE was charmed as usual by Josiah and how easy he is. I hear all the time comments on how they wish EVERY patient was as easy as Jojo. It's because I named him Josiah Valor!;-) I got to speak to another Hematologist Dr. Buchbinder. I told him " you know we need a doctor like Dr House, would that happen to be you? " :-) He replied that NO, He's not house. He advised me to make sure we immediately got the other children tested to see if they are Bone Marrow Transplant matches for Josiah. he mentioned that each child of mine has a 25 % chance EACH (not combines as previously thought) of being a match. He said "you don't want to just keep on transfusing him because, we'll you just don't." I asked him "can you tell me the statistical data on graft vs host disease in exact sibling matches? Is the incident high or low?" He mentioned that it's hard to say because each case is different.
I am a planner so I want to know cold hard statistics. I want to know the odds on my son beating this disease. I asked if it is unlikely and improbable he'd get GVHD and he said "No it isn't rare, you really just never know why certain people get GVHD" I explained to him how disappointing this was to hear. I was really hoping for assurance that if we elected to go that route that our odds are good to have a positive outcome. I longed to hear him to say that the odds of Josiah suffering GVHD was minuscule. I appreciate Dr Buchbinder being a straighter shooter and answering our questions honestly. All the more to take this burden to the Lord. and to lay it at his feet.

When we FINALLY got out of there SIX HOURS LATER the airsoft party had already begun. Of course people were pretty understanding. It was SO wonderful, to be able to fellowship and see so many friends and their children enjoying themselves! My little lately lethargic Josiah was bouncing off WALLS with his new and improved hemoglobin levels. :-)
Here are just a few of the highlights.

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.
______________
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

Maxwell's Conference... AGAIN

Isn't this BEAUTIFUL. It's made from all wood! I'd love this in my home with a different verse and bit smaller. Maybe one of my boys will one day excell in woodworking. ;-)



A photo with Teri Maxwell.

The whole family drove down to Fallbrook for the Maxwell Conference. This amazing family's website is over at www.titus2.com. The Maxwell's have wonderful resources, including a newsletter that you can sign up for. Some of their resources are "Managers of their Home," "Managers of their Chores" "Keeping our Children's hearts" and "Homeschooling with a meek and quite spirit." We attended their family conference with Exploring Homeschooling back when they came out a couple years back. With all that has been going on with Huatzin being out of work, Josiah being sick, doctors appointments, homeschooling and trying to be keeper of the home with lack of funds, resources and bill upon bill coming in daily without the ability to pay them, I've been quite frustrated. I have been edgy, stressed and STARVED for encouragement. I was SO blessed to attend this right before Valentine's Day.

Maxwell family bus! How neat to travel cross country Sharing Jesus.


I found this little refresher to be a huge reminder of many areas that I have grown lax on in the past year. From allowing ungodly media into our home, (in the past we held the standard of "is it educational and/or godly? Then went on down to "is it amusing and will it give me a moment to myself.YIKES!) to becoming lazy with ungodly influences, to the destructive fruit of anger. I was blessed by Teri's talk on Depression. Most of all the Lord pricked my heart with little ways where I had fallen lax with nurturing my marraige and reverencing my husband. It was all so timely. I was surprised at how much worse off I was then when I first heard them speak years ago. I don't believe that having a period of difficulty (in my case a whole YEAR) is excuse to sin or become lazy but all the more reason to SHINE for His Glory and reflect light in darkness. I have heard it said that just as you go to the doctors (assuming you can afford to) for a physical checkup, so you should even more so do occasional "spiritual" check ups. We were all blessed. Huatzin included. We spent the drive home talking about how we plan on implemeting these pricipals, It was wonderful. I LOVE my husband. Here are some very neat pictures I took while at the little church in Fallbrook.

A Firsthand Report From Haiti

This is so beautiful! read to the end.

The Family Room archives - FamilyLife.com

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/

Anguishing Snapshot of Haiti

Anguishing Snapshot of Haiti’s Ache: Take My Child

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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