Anyone in the mood to walk or run to raise awareness for organ donation? If so, please join us on May 1st at Centennial Park in Waukee, for the 2010 C.A.R.E. 5K & 10K Run and Walk, sponsored by My Angel Foundation. For info on the race and to register please click here. Please let me know if you sign up because I would love a walking buddy (I'm pushing the kiddos in the stroller) and Nate would love a running buddy.
Click here to view an article that I wrote (the same one that was published last year by the Utah Baby Guide) about Beckham, that is also on the My Angel Foundation website.
Hope to see you there!
-Beckham & Co.
Saturday, April 24, 2010
Sunday, April 18, 2010
A few requests!!
Just a post to PLEASE ask for prayers and thoughts for some friends and family that could really use them!
This is my adorable brother-in-law, Devin. This picture pretty much sums up who Devin is and how he changes lives with just his smile. Devin was born with Cerebral Palsy, and has recently been in the hospital for the last couple of week battling an infection, a fracture that has required a surgery where screws and plates were placed in his hip, and horribly painful seizure that happen as often as every 3-4 minutes. Please remember him in your prayers! We sure love this little guy more than we can even express and can't wait to see his smiling face again!
This is our University of Iowa heart transplant buddy, Bryce (carepages.com - BryceDraisy). To put it plainly, Bryce rocks. He is one tough 12 year old who always has a smile on his face (at least he does whenever I have seen him!). Bryce is currently waiting for his second heart transplant because of rejection and many other issues with his first transplanted heart. He is on the LVAD for the second time and is having some serious complications. Please remember him in your prayers as well. Please also remember his family. He has one of the most amazing moms that I have ever met!
This is little Miracle Mason (isn't he one of the cutest little kids you have ever seen?). He is from our home state of Utah and just received his angel heart transplant on Easter Sunday. He is currently rejecting his new heart because of antibodies that he received treatment for before transplantation. He is receiving Plasmapheresis (the treatment that was so HARSH on Beckham) and many other treatments to try and stop his rejection. Please pray for this little sweetie. He received his transplant at Stanford, and I know that Mason and his mom would LOVE to get home to Utah and see the rest of their family.
Thank you all!
-Kim
Sunday, April 11, 2010
a BIG rise in platelets and a BIG thank you!
After labs were drawn on Thursday, and given Beckham's horribly bruised appearance, I was a little nervous that there might have been a drop in his slightly improved platelet count. Good thing I was very wrong (these are the moments that I love to be wrong), and very wrong at that, as his number that came back was 287!
The great news is that he, once more, responded to the IVIG, and that he will not have to have a more drastic treatment at this time. The good news is that his counts are high enough that he does not have to wear his helmet anymore. The not-so-good news is that he still looks pretty rough - covered in bruises and a very pale coloring - but, we'll be happy to take that in place of something else! Beck will actually continue to bruise for a little while because, even though his platelets are in normal ranges, his body is still behind and still thinks they are low. Weird, right? I was actually scared to take him and Gwen to the park yesterday because I did not want someone to see him and assume that he is abused instead of suffering from a blood disorder.
I couldn't end this post without saying a HUGE thank you to everyone that commented, called, text, e-mailed, and so forth about my last post! It meant more than I can say and then some! Please know that I have NO intention of going private or canceling this blog! I enjoy blogging too much (never thought I'd admit that!) and I think private blogs are a pain (no offense to my private blog friends!).
Thank you all again!
-Kim
The great news is that he, once more, responded to the IVIG, and that he will not have to have a more drastic treatment at this time. The good news is that his counts are high enough that he does not have to wear his helmet anymore. The not-so-good news is that he still looks pretty rough - covered in bruises and a very pale coloring - but, we'll be happy to take that in place of something else! Beck will actually continue to bruise for a little while because, even though his platelets are in normal ranges, his body is still behind and still thinks they are low. Weird, right? I was actually scared to take him and Gwen to the park yesterday because I did not want someone to see him and assume that he is abused instead of suffering from a blood disorder.
I couldn't end this post without saying a HUGE thank you to everyone that commented, called, text, e-mailed, and so forth about my last post! It meant more than I can say and then some! Please know that I have NO intention of going private or canceling this blog! I enjoy blogging too much (never thought I'd admit that!) and I think private blogs are a pain (no offense to my private blog friends!).
Thank you all again!
-Kim
Wednesday, April 7, 2010
Addressing an Issue
I am a little too lazy to write two blog posts in one day (way too much work, and way too much time on the computer)...but today is different. I posted a "Beckham" update this morning, letting everyone know about our hospital visit earlier this week, and I am now writing another post to address an issue that I feel could not wait until tomorrow.
I received and "anonymous" comment on a previous post that has deeply affected and hurt my feelings - I actually can barely type this post because my tears are blurring my vision and my hands are shaking so. The comment may not have been intended to hurt my feelings (or it may have), but it did...so much. Whoever wrote this comment, I am not trying to attack or single you out, I just want to address what you wrote and let you know how I feel about my sweet little girl. And since you wrote this as anonymous, I cannot contact you directly.
Here is the comment:
"Don't you have 2 kids? Sometime I feel like you forget about your other one and perhaps she might just be a bit resentful as she gets older and realizes life revolves around your son."
First off: I want to apoligize for ever leading any reader to think that my sweet and perfect daughter, Gwen, is any less important than Beckham. She has been the glue that has held us together through all that we have been through with Beckham. I know that she was sent to us specifically to guide us and lift us, and remind us that there is always hope in every situation. We love her more than we can even express...and she knows that! Actually, after I read the above comment this morning, I went to my Gwen and cried and hugged her and asked if she knew that I loved her. Her response was (with her adorable smile) "yeah mommy, I know that." She then ran to the counter to get me a tissue and said "here, this will make you feel better."
Second: I have tried to make it clear in both the title of this blog and the description that is below Beckham's heath info, that this blog is intended for the use of updating others on Beckham's health and that most of the posts will be about Beckham. This is why we started this blog in the first place - to let others know about Beckham because we do not have the ability to update everyone in person. I also write this blog as a journal for Beckham's health, and as a guide for other parents whose children struggle with similar issues.
Third: I want you to know that as a mother, and the mother of a chronically sick child, that I have made it my sole purpose to make sure that my Gwen knows that she is not and will never be second to Beckham because she was born healthy. Gwen, has suffered greatly through the last couple of years because she has to watch her brother suffer, has had to be separated time and time again from her parents because they are in the hospital with Beck, has had to stay inside, away from the outside world so that she does not bring in an illness, and has had to do endure everything over and over again. And through all of it, she has weathered it like no other. She is truly amazing. If I have failed to mention her amazing strength through all of this, I greatly apologize. A big part of why I have not posted more about Gwen through all she has been through, is because my heart is broken each time I watch her suffer, and writing it on the blog, along with all of Beckham's issues, is a very daunting task (to say the least).
I have debated if I should continue this blog or if I should go private. I do not want to do this, but I do not want anyone to think that I am not trying my hardest to make sure my Gwen knows that she is loved. My heart is truly broken over this comment and I want to make sure that everyone out there knows that it was NEVER my intention to give off the above impression. I am truly, truly sorry for doing so.
To my Gwen, I love your crazy, sassy, adorable self so much. Thank you for being mine. You make me smile even when I feel like there is nothing to smile about. I am so glad that I get to have you forever!
-Kim
I received and "anonymous" comment on a previous post that has deeply affected and hurt my feelings - I actually can barely type this post because my tears are blurring my vision and my hands are shaking so. The comment may not have been intended to hurt my feelings (or it may have), but it did...so much. Whoever wrote this comment, I am not trying to attack or single you out, I just want to address what you wrote and let you know how I feel about my sweet little girl. And since you wrote this as anonymous, I cannot contact you directly.
Here is the comment:
"Don't you have 2 kids? Sometime I feel like you forget about your other one and perhaps she might just be a bit resentful as she gets older and realizes life revolves around your son."
First off: I want to apoligize for ever leading any reader to think that my sweet and perfect daughter, Gwen, is any less important than Beckham. She has been the glue that has held us together through all that we have been through with Beckham. I know that she was sent to us specifically to guide us and lift us, and remind us that there is always hope in every situation. We love her more than we can even express...and she knows that! Actually, after I read the above comment this morning, I went to my Gwen and cried and hugged her and asked if she knew that I loved her. Her response was (with her adorable smile) "yeah mommy, I know that." She then ran to the counter to get me a tissue and said "here, this will make you feel better."
Second: I have tried to make it clear in both the title of this blog and the description that is below Beckham's heath info, that this blog is intended for the use of updating others on Beckham's health and that most of the posts will be about Beckham. This is why we started this blog in the first place - to let others know about Beckham because we do not have the ability to update everyone in person. I also write this blog as a journal for Beckham's health, and as a guide for other parents whose children struggle with similar issues.
Third: I want you to know that as a mother, and the mother of a chronically sick child, that I have made it my sole purpose to make sure that my Gwen knows that she is not and will never be second to Beckham because she was born healthy. Gwen, has suffered greatly through the last couple of years because she has to watch her brother suffer, has had to be separated time and time again from her parents because they are in the hospital with Beck, has had to stay inside, away from the outside world so that she does not bring in an illness, and has had to do endure everything over and over again. And through all of it, she has weathered it like no other. She is truly amazing. If I have failed to mention her amazing strength through all of this, I greatly apologize. A big part of why I have not posted more about Gwen through all she has been through, is because my heart is broken each time I watch her suffer, and writing it on the blog, along with all of Beckham's issues, is a very daunting task (to say the least).
I have debated if I should continue this blog or if I should go private. I do not want to do this, but I do not want anyone to think that I am not trying my hardest to make sure my Gwen knows that she is loved. My heart is truly broken over this comment and I want to make sure that everyone out there knows that it was NEVER my intention to give off the above impression. I am truly, truly sorry for doing so.
To my Gwen, I love your crazy, sassy, adorable self so much. Thank you for being mine. You make me smile even when I feel like there is nothing to smile about. I am so glad that I get to have you forever!
-Kim
Update 4/7/10
I'm sorry for waiting so long to update on our little guy. We've had a busy couple of days and I have not found the time to do a quick update.
Short version:
We tried to do the outpatient hem/onc clinic for Beck's IVIG infusion, but ended up as inpatients anyway. After a few ups and downs, we are now home and doing well.
Long version:
I checked Beck into the outpatient clinic on Monday morning and everything was going great - only one poke to get an IV in, meds arrived on time, and Beck was doing well and tolerating everything thus far. But when they started to infuse the meds, Beck, let out a huge scream and grabbed at his IV site. After this happened over and over again, there was no choice but to pull his IV because, obviously, it was really hurting him. The good news was that he felt much better when the IV was pulled, the bad news was that after 8 attempts to place and IV, one was finally able to be put in his head (and that was with life flight placing the IV). By this time, it was the late afternoon and with the infusion of the IVIG was slated to finished around 7:00 PM, and the difficulty in placing his head IV (they did not want to lose this IV site and have to poke around for another one), it was decided to keep us in the hospital.
(This is Beckham after his multiple IV pokes. He took he a really great nap afterward!)
On Tuesday morning labs were checked and showed that Beck's platelets had risen to 87 (we haven't seen that high of a number in over 2 months!), with his hemoglobin hanging out in the 9's. With that, the hem/onc doctor decided to do only one more IVIG treatment (the original plan was to do 5 days of treatments) and then send us home later that day. Sadly, by the time the IVIG arrived, Beck had pulled his IV out and life flight had to be called back in for another round of poking around his body for a suitable vein. Luckily, another scalp vein was found, and our little guy was saved from become a pin cushion for the second day in a row. He finished treatment around 6:00 PM and we were sent home soon after. We won't know his platelet counts until tomorrow, but I will try really hard to keep you all posted.
A couple of side notes:
I did have a long talk with the hematologist about Evans Syndrome and what Beck's life will be like in the future. She did tell me that Evans Syndrome kiddos can live normal lives and can do most everything that others can do, but to expect lots of ups and downs in his labs, especially his platelets. She did say, however, that she still believes that his syndrome is related to his anti-rejection drugs. I actually rolled my eyes at this - not because I was annoyed, but because this is a NEVER ending debate between the transplant team and the hem/onc team - and told her that I don't know what to think. Only time will tell (though, I am leaning more towards Evans Syndrome in general than Prograf induced Evans Syndrome).
One thing the hematologist did suggest is that we try doing a monthly IVIG on Beckham, to try and stop the symptoms even before they start. I am actually taking this into consideration, but I first want to see how long it takes Beck to relapse after this last ITP episode. Our insurance is going to LOVE (ha ha) us if we decide to do a monthly IVIG because each IVIG dose is around $15,000. Yikes! All I can say, is that I am so grateful for insurance.
We'll keep you posted on any changes throughout the week.
Till then....
-Beckham & Co.
Short version:
We tried to do the outpatient hem/onc clinic for Beck's IVIG infusion, but ended up as inpatients anyway. After a few ups and downs, we are now home and doing well.
Long version:
I checked Beck into the outpatient clinic on Monday morning and everything was going great - only one poke to get an IV in, meds arrived on time, and Beck was doing well and tolerating everything thus far. But when they started to infuse the meds, Beck, let out a huge scream and grabbed at his IV site. After this happened over and over again, there was no choice but to pull his IV because, obviously, it was really hurting him. The good news was that he felt much better when the IV was pulled, the bad news was that after 8 attempts to place and IV, one was finally able to be put in his head (and that was with life flight placing the IV). By this time, it was the late afternoon and with the infusion of the IVIG was slated to finished around 7:00 PM, and the difficulty in placing his head IV (they did not want to lose this IV site and have to poke around for another one), it was decided to keep us in the hospital.
(This is Beckham after his multiple IV pokes. He took he a really great nap afterward!)
A couple of side notes:
I did have a long talk with the hematologist about Evans Syndrome and what Beck's life will be like in the future. She did tell me that Evans Syndrome kiddos can live normal lives and can do most everything that others can do, but to expect lots of ups and downs in his labs, especially his platelets. She did say, however, that she still believes that his syndrome is related to his anti-rejection drugs. I actually rolled my eyes at this - not because I was annoyed, but because this is a NEVER ending debate between the transplant team and the hem/onc team - and told her that I don't know what to think. Only time will tell (though, I am leaning more towards Evans Syndrome in general than Prograf induced Evans Syndrome).
One thing the hematologist did suggest is that we try doing a monthly IVIG on Beckham, to try and stop the symptoms even before they start. I am actually taking this into consideration, but I first want to see how long it takes Beck to relapse after this last ITP episode. Our insurance is going to LOVE (ha ha) us if we decide to do a monthly IVIG because each IVIG dose is around $15,000. Yikes! All I can say, is that I am so grateful for insurance.
We'll keep you posted on any changes throughout the week.
Till then....
-Beckham & Co.
Saturday, April 3, 2010
Attention Utah County readers...
As many of you know Nate's dad owns a restaurant in Salt Lake called Scaddy's. Well they just opened a new store in Lehi, UT.
Hope you can all make it out. The food is great.
You can find it at:
1750 W Main St
Lehi, UT
Also, you can become a fan on Scaddy's Facebook site.
To make it so this doesn't look like a completely unrelated advertisement I thought I'd put in a picture of Beckham showing his Scaddy's support when he was still on the steroids.
(We would have done an updated picture, but he has a pretty big shiner right now)
Hope you can all make it out. The food is great.
You can find it at:
1750 W Main St
Lehi, UT
Also, you can become a fan on Scaddy's Facebook site.
To make it so this doesn't look like a completely unrelated advertisement I thought I'd put in a picture of Beckham showing his Scaddy's support when he was still on the steroids.
(We would have done an updated picture, but he has a pretty big shiner right now)
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