Beckham is a very typical 2 year old - naughty, rambunctious, sweet, playful, and a big tease. Apparently, and sadly, so are his platelets (except for the rambunctious and sweet part!) as they have chosen to drop again to 24. What teasers to raise to 48 and then plummet right back down. Not cool. Not cool at all. His hemoglobin is hanging out at 9 even, with a hematocrit of 27, and red blood cells at 3.4. Obviously his levels are not wanting to rise on their own (which I did not expect they would) so it's time to do something about it.
The game plan: IVIG! The reason for the IVIG: because I asked for Beckham to receive IVIG before we go all the way to Rituxin. I just wanted to try something a little less drastic and see if his little body will respond to it. Thus far, Beckham, has responded to IVIG 50% of the time. Not the best record, but it's better than zero! If he does not respond, then Rituxin will be the next drug of choice. The IVIG will be started on Monday (unless his levels come back super low on Thursday) and we are going to attempt to do them through an outpatient clinic. I'm a little nervous how this will go because it takes hours to infuse the IVIG, plus vitals have to be taken constantly to make sure that Beck is responding to them in a positive manner. It's not like we don't know the IVIG drill, as we have been though it multiple times before, but we have always been in the hospital, and it was always a little easier to contain this little guy and keep him occupied. On the bright side, we get to stay out of a germ filled hospital!
That's it for an update on Becks. We'll give you more info once it comes. On a different subject, I should mention that Nate and I finally changed our Utah phone numbers to Iowa numbers (it only took 4 1/2 years to do so). If you would like our new numbers please let me know and I will e-mail them to you. Thanks!
-Beckham & Co.
Wednesday, March 31, 2010
Saturday, March 27, 2010
Unexpected rise
While Beck looks worse than he has in the last couple of months in terms of bruising, his platelets actually rose slightly to 48 yesterday. This was very unexpected because, honestly, Beck looks really bad...almost as bad as he did last year when his platelets were below 10. I still find it a little hard to believe that they rose. Lets just hope and pray that this is only the start of his platelet rise and that when levels are checked again on Monday they will have risen even more!
Beck's other labs looked a lot the same with his hemoglobin hanging out in the 9's and everything else semi-stable. This is a good thing. A very good thing. And gives us hope that nothing else is brewing inside his little body. His behavior is also pretty stable with lots of energy and a good appetite. The only thing that is alarming is that his puking has returned and is become too frequent to be called a coincidence. I have already cleaned up 2 HUGE vomits today and am hoping that there will not be any more. If there are....well, lets just hope there is not (I don't want to write anything and jinx ourselves in the process!). And, also, I don't want Beck to vomit anymore because, Gwen, likes to stand over him while he pukes and yell "he's puking," and then make vomiting noises along with him (lovely).
We'll keep you posted on lab results on Monday and so forth. Keep praying for our little guy. He (and the rest of us) sure feel the strength of every prayer that is offered in his behalf. Thanks!
Taken during a walk this week. It was cold and windy, but the kiddos enjoyed it so much that they curled up and went to sleep (obviously).
-Beckham & Co.
Beck's other labs looked a lot the same with his hemoglobin hanging out in the 9's and everything else semi-stable. This is a good thing. A very good thing. And gives us hope that nothing else is brewing inside his little body. His behavior is also pretty stable with lots of energy and a good appetite. The only thing that is alarming is that his puking has returned and is become too frequent to be called a coincidence. I have already cleaned up 2 HUGE vomits today and am hoping that there will not be any more. If there are....well, lets just hope there is not (I don't want to write anything and jinx ourselves in the process!). And, also, I don't want Beck to vomit anymore because, Gwen, likes to stand over him while he pukes and yell "he's puking," and then make vomiting noises along with him (lovely).
We'll keep you posted on lab results on Monday and so forth. Keep praying for our little guy. He (and the rest of us) sure feel the strength of every prayer that is offered in his behalf. Thanks!
Taken during a walk this week. It was cold and windy, but the kiddos enjoyed it so much that they curled up and went to sleep (obviously). -Beckham & Co.
Wednesday, March 24, 2010
Appointment update
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.
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.
Sunday, March 21, 2010
Platelet drop...but we're still home!
First off, thank you so much for the comments that were left on my last post. They meant so much and showed me how well supported my little family is during our hard times. I forget what amazing family and friends we have that carry and lift us through every trial. We are truly never alone. Thank you!
Second, I am sorry to have left you all on a limb without doing a further update this week on Beckham's health. I need to do better at updating more than just once a week. I should blame it on myself and my own laziness, but I am going to blame it on Hulu, which is my guilty pleasure. It's just too tempting to flip that on and get engrossed in a show instead of taking the time to write a post (please tell me that I am not the only one with a Hulu obsession?). But, I am going to make up for it now and give a detailed update.
Beckham had a pretty stable week for the most part with zero hospital stays, 2 blood draws, and even a little out of the house trip that was not health care related. His labs on Monday showed that his platelets had dropped down to 36 (yikes) and his hemoglobin was in the high 9's. This was not unexpected given his bruised and petechiae covered (red spots under the skin from blood that has leaked from the capillaries into the skin) appearance, but was still a blow because his platelets had been in the 70's the week before. I assumed at this point that we were headed up to Iowa City to begin treatment, but was proven wrong when his transplant doctor wanted to wait because he was, for the most part, stable. I'm not going to lie, I was a little irked at this point because I felt that platelets of 34 was not good (which it isn't) and that he needed to be started on a treatment. But after talking to the transplant team, I felt better and agreed to wait a couple of days and repeat labs again. When labs were drawn again, the results showed that his platelets had dropped only by 2 to 34 and that his hemoglobin was hovering in the low 9's. Still not great news, but still stable enough for us to stay home, but be super cautious in the process. We will head up to Iowa City on Tuesday for more labs and to meet with his transplant doctor and to discuss where we go from here. I promise to write another update at that time!
We have to, once again, pad Beckham's bed so that he does not harm himself when he sleeps. Pretty creative design, right?
As for some good news, we found a place to live in Iowa City! Yeah! After a day trip to look at a bunch a places (and let me tell you, there are some NASTY and expensive places that people try to rent out) we finally narrowed it down to two choices. Nate and I went back and forth, but finally decided on the place with the backyard - something that was our main criteria in the first place. We are excited to move (though we don't know exactly when), but now we have to go through the stress of figuring out what to do with our place here. If anyone is interested in a super cute two bedroom town house, please let me know!
I LOVE this picture. It is not only cute, but shows a milestone that we have waited for. Beckham has refused to sit down in a chair and eat since he lost his appetite a couple of months ago. He has also NEVER eaten pancakes. In this photo he is doing both!
Please keep our little guy in your prayers! He looks pretty rough right now with bruises from head to toe, and he keeps getting more because he never lets anything stop him.
-Beckham & Co.
Second, I am sorry to have left you all on a limb without doing a further update this week on Beckham's health. I need to do better at updating more than just once a week. I should blame it on myself and my own laziness, but I am going to blame it on Hulu, which is my guilty pleasure. It's just too tempting to flip that on and get engrossed in a show instead of taking the time to write a post (please tell me that I am not the only one with a Hulu obsession?). But, I am going to make up for it now and give a detailed update.
Beckham had a pretty stable week for the most part with zero hospital stays, 2 blood draws, and even a little out of the house trip that was not health care related. His labs on Monday showed that his platelets had dropped down to 36 (yikes) and his hemoglobin was in the high 9's. This was not unexpected given his bruised and petechiae covered (red spots under the skin from blood that has leaked from the capillaries into the skin) appearance, but was still a blow because his platelets had been in the 70's the week before. I assumed at this point that we were headed up to Iowa City to begin treatment, but was proven wrong when his transplant doctor wanted to wait because he was, for the most part, stable. I'm not going to lie, I was a little irked at this point because I felt that platelets of 34 was not good (which it isn't) and that he needed to be started on a treatment. But after talking to the transplant team, I felt better and agreed to wait a couple of days and repeat labs again. When labs were drawn again, the results showed that his platelets had dropped only by 2 to 34 and that his hemoglobin was hovering in the low 9's. Still not great news, but still stable enough for us to stay home, but be super cautious in the process. We will head up to Iowa City on Tuesday for more labs and to meet with his transplant doctor and to discuss where we go from here. I promise to write another update at that time!
We have to, once again, pad Beckham's bed so that he does not harm himself when he sleeps. Pretty creative design, right?As for some good news, we found a place to live in Iowa City! Yeah! After a day trip to look at a bunch a places (and let me tell you, there are some NASTY and expensive places that people try to rent out) we finally narrowed it down to two choices. Nate and I went back and forth, but finally decided on the place with the backyard - something that was our main criteria in the first place. We are excited to move (though we don't know exactly when), but now we have to go through the stress of figuring out what to do with our place here. If anyone is interested in a super cute two bedroom town house, please let me know!
I LOVE this picture. It is not only cute, but shows a milestone that we have waited for. Beckham has refused to sit down in a chair and eat since he lost his appetite a couple of months ago. He has also NEVER eaten pancakes. In this photo he is doing both! Please keep our little guy in your prayers! He looks pretty rough right now with bruises from head to toe, and he keeps getting more because he never lets anything stop him.
-Beckham & Co.
Saturday, March 13, 2010
A hard time
I'm not one to "blog" instead of writing an update or give a little glimpse into our lives, but tonight I wanted to use this website to write down a couple of thoughts, hoping to collect myself in the process.
This week has been tough as I watched Beckham closely, noticing how each day brought more bruises, more evidence that something was not right, and proof when his labs came back with lowered platelets again (which are continuing to decline). He does not have an illness at all that could be causing his decline in platelets, but then again, he does not have too. He has Evans Syndrome, which means that he can drop at any moment. Yikes. I'm not okay with that. I hate watching him suffer.
I spent hours this week researching Evans Syndrome, becoming FREAKED out with what I read (P.S - my advise to anyone is to NOT research stuff because it scares that crap out of you!), and becoming more scared for the future - scared for Beckham's health, scared that he will not get to experience things that a little boy should be allowed to experience, scared that this will effect his angel heart, scared of the treatments he will have to receive again, and just plain scared in general.
Bottom line: I'm having a hard time with this. A really hard time. A really, really, really hard time.
Right before I put the kiddos to bed tonight, I watched Beckham barely smack his back side against something, and a huge bruise immediately appeared (one of MANY bruises). I went to my room after the kids were down and had a meltdown. And after I composed myself I sat and thought and thought and thought and then I turned on my computer and watched this:
The new bottom line: I'm going to have a hard time with this....but that's okay. I'm supposed to have a hard time. And, I'm not alone, nor will I ever be. Beckham is worth every bit of this suffering. I love him more than words can express. He is mine, and Heavenly Father knew that he (and I) could handle this.
And I'm okay with that.
This week has been tough as I watched Beckham closely, noticing how each day brought more bruises, more evidence that something was not right, and proof when his labs came back with lowered platelets again (which are continuing to decline). He does not have an illness at all that could be causing his decline in platelets, but then again, he does not have too. He has Evans Syndrome, which means that he can drop at any moment. Yikes. I'm not okay with that. I hate watching him suffer.
I spent hours this week researching Evans Syndrome, becoming FREAKED out with what I read (P.S - my advise to anyone is to NOT research stuff because it scares that crap out of you!), and becoming more scared for the future - scared for Beckham's health, scared that he will not get to experience things that a little boy should be allowed to experience, scared that this will effect his angel heart, scared of the treatments he will have to receive again, and just plain scared in general.
Bottom line: I'm having a hard time with this. A really hard time. A really, really, really hard time.
Right before I put the kiddos to bed tonight, I watched Beckham barely smack his back side against something, and a huge bruise immediately appeared (one of MANY bruises). I went to my room after the kids were down and had a meltdown. And after I composed myself I sat and thought and thought and thought and then I turned on my computer and watched this:
The new bottom line: I'm going to have a hard time with this....but that's okay. I'm supposed to have a hard time. And, I'm not alone, nor will I ever be. Beckham is worth every bit of this suffering. I love him more than words can express. He is mine, and Heavenly Father knew that he (and I) could handle this.
And I'm okay with that.
Sunday, March 7, 2010
Week recap
After a pretty busy week, I am finally finding time to sit in front of the computer and write an update. For starters, I wanted to say that we are still home and out of the hospital! Yeah! I figured that it's always great to start off with great news instead of dragging it out until the end.
Here's a recap of the last week:
1. My last post left off with Beckham's platelets in the 50's, his hemoglobin at 10, and the diagnosis of pneumonia. Today, I can report that his platelets are at 120 (lower than the normal range, but we'll take it), his hemoglobin at 10.5 (low end of normal), and his pneumonia has cleared up. Yeah again! It has taken this whole week for Beck's platelets to finally climb (and climb on their own without the help of meds!), and because of this he is covered in bruises again. All that I can say is that a crazy two year old + low platelets + always having to stay inside = lots and lots of bruises! Yikes.
This is how covered in bruises he is over his entire body.
2. We (Beck and myself) only had one ER visit with his low platelets (I consider that a HUGE milestone!) because I could not get his finger to stop bleeding and also because he had bloody poop. It took 5 hours to get a pin size cut to stop bleeding (with the aid of a clotting gel), but we were able to make it home without being admitted.
3. With Beckham's platelets and hemoglobin dropping with his last couple of illnesses, it is now confirmed that his does, in fact, have Evans Syndrome. This is a big blow...but not something that was unexpected because there was a huge chance that this was the case. We still do not know what the future holds for our little guy, or if we are to expect his counts to drop with every illness, but we do know that this is our reality and we will take it happily. We'd do anything for this little guy. I just wish that I knew someone else who has this illness or knows someone with this. I have never met anyone that is familiar with this illness, and I would love to chat and ask questions with someone. Anyone out there know someone with Evans Syndrome?
4. I had a small surgery done this last week to remove a tumor from my chest, which came back benign for cancer (big yeah!). I am doing great and counting my blessings!
That's it for now. The rest of us are doing great and looking forward to the warm weather that I know will eventually come. My kiddos are so board and out of things to entertain themselves. Here's the proof:
-Beckham & Co.
Here's a recap of the last week:
1. My last post left off with Beckham's platelets in the 50's, his hemoglobin at 10, and the diagnosis of pneumonia. Today, I can report that his platelets are at 120 (lower than the normal range, but we'll take it), his hemoglobin at 10.5 (low end of normal), and his pneumonia has cleared up. Yeah again! It has taken this whole week for Beck's platelets to finally climb (and climb on their own without the help of meds!), and because of this he is covered in bruises again. All that I can say is that a crazy two year old + low platelets + always having to stay inside = lots and lots of bruises! Yikes.
This is how covered in bruises he is over his entire body.2. We (Beck and myself) only had one ER visit with his low platelets (I consider that a HUGE milestone!) because I could not get his finger to stop bleeding and also because he had bloody poop. It took 5 hours to get a pin size cut to stop bleeding (with the aid of a clotting gel), but we were able to make it home without being admitted.
3. With Beckham's platelets and hemoglobin dropping with his last couple of illnesses, it is now confirmed that his does, in fact, have Evans Syndrome. This is a big blow...but not something that was unexpected because there was a huge chance that this was the case. We still do not know what the future holds for our little guy, or if we are to expect his counts to drop with every illness, but we do know that this is our reality and we will take it happily. We'd do anything for this little guy. I just wish that I knew someone else who has this illness or knows someone with this. I have never met anyone that is familiar with this illness, and I would love to chat and ask questions with someone. Anyone out there know someone with Evans Syndrome?
4. I had a small surgery done this last week to remove a tumor from my chest, which came back benign for cancer (big yeah!). I am doing great and counting my blessings!
That's it for now. The rest of us are doing great and looking forward to the warm weather that I know will eventually come. My kiddos are so board and out of things to entertain themselves. Here's the proof:
-Beckham & Co.
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