After heading to Iowa City yesterday to meet with Beckham's cardiologist (transplant doctor), I am still feeling a little uneasy and unsure about our little guy. His labs showed that his platelets have dropped again to 26, but his hemoglobin is remaining slightly low but stable at 9.7. We are still home at the present and if we stay here I will be shocked (I promise I am not sounding like a Debbie Downer, just being realistic). This is all becoming too much like last year, and how ironic that it is happening at the exact same time. Sometimes I hate ironies!
Beck's labs will be checked again on Friday and if they have dropped to 10 or below then we will be starting a treatment, and sadly, the treatment of choice that his doctor would like to use is Rituxin (a type of chemo treatment). I was a little shocked by this news because I assumed that his doctor would choose a treatment that was not quite as drastic. While we did see results from Rituxin last year, we also had the result of ALL of his B-cells being destroyed, meaning that we were on complete lock down for the entire summer. Beck also had a nasty reaction when the Rituxin was being infused into his body - violent shaking all over his body, a high fever, and super high heart rate (the reason for this is because the med actually bursts the b-cell, releasing all of their toxins into his blood stream). I asked the doctor is Beck will have the same reaction when he receives Rituxin this time and his response was "probably." Yikes! One thing that his doctor does want to do is avoid steroids at all costs. I am okay with that. VERY okay with that! And I'm sure that Beckham is okay with that also.
I received a little incite into Evans Syndrome during this appointment as the doctor explained what is believed to happen with this disease: when a normal person gets an illness (or some sort of foreign antibody), the body's automatic response is to find and destroy that antibody, thus fighting the illness. But in the case of Evans Syndrome, the body instead mistakes the platelets, red blood cells, and sometimes white blood cells, for the antibodies and destroys them instead. Great, right? Aren't our bodies crazy?
That's it for now. We'll update again on Friday after we receive lab results. Till then, I am going to have a talk with Beckham's platelets and tell them that it is time for them to start behaving and rising to normal levels. They better listen!
-Beckham & Co.
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9 comments:
as always- you are in ourprayers....Beckham is such a fighter and you all are amazing!
Wow. You guys sure do go through a lot with Beckham. {{{HUG}}}
It is good that eh has remained stable and I am truly praying that he remains that way.
You are going through SO much!!! Owen had the same reaction to the Rituxin.. that's crazy!! It freaked me out a little too much and I said "NO MORE!" I guess if you don't have a choice, what can you do?
I hope that he is able to stay home and avoid those nasty treatments. Poor guy.
We're praying for you all!!
We are doing some praying for those platelets to straighten up and behave too! Hugs to you girl and sweet lil Beck! Believing and Praying for a good report on Friday.
Rhonda
I am just glad that there is a doctor that knows enough to figure out what will help our beck! His mother is the smartest chick in Iowa and most states in the union! Prayer is non stop and I am always doing it anyway coz I am a natural train WRECK. I love you and your family. I hope that I love Nate coz I have never met him. He must be okay if you stay married to him coz I trust your judgement. Plus he has really big hair and I love big hair. Love Ant Kathy
Kim,
I do so understand what you are going through, as my son has a different shaped blood cell and the spleen ate them up like gangbusters. He had hemoglobin in the 8's and once went down to a 2 during a parvo virus episode. The folic acid helped alot in stabilizing the hemoglobin to the 10's, but spleen removal cured that for good. He is now 27!
I know it is not the same as little Beckhams condition, but I know the mommmy worries are. I was a wreck, but like you my faith carried me through.
I know the bruising must be very scary for you, and I also read everything on the internet and freaked out. I must say I learned a lot and it made me better at diagnosing things, but also gave me severe anxiety and worry lines :(
I just want you to know that many are praying for your sweet boy and I am one of those at the top of the list. I think that's why I am drawn to little ones with medical issues on the internet. I want so badly to take their pain away and help their worried moms.
Worry is a monster so please
remember to deep breathe occasionally, take care of yourself and enjoy precious moments with your little ones and Dad.
{{big mom to mom hug}
Hey girl, Your post on my blog brought me to tears. If I lived in your area, I would come over and set up a restaurant style meal at your house especially for you and your sweet family. I would even be your waitress! I am praying for you, I can't imagine what you go through daily. I pray for GOd to continue to touch Beckham and give you the strength you need. He is an amazing little boy and inspires me daily and so do you! Just know you got a friend in SC Praying!!
Rhonda
www.lylefamily5.blogspot.com
I found your blog from another one. I will be praying for your little guy. My son has tricuspid atersia and his blog spot is www.adampeanut.blogspot.com
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