"Alexander and the Terrible, Horrible, No Good, Very Bad Day"

During the last two weeks much of my time has been spent crouched on the bathroom floor, reading a book to Gwen, and hoping beyond hope that she will inadvertently use the toilet in the process. Some of the time has been successful, and LOTS of the time has been a failure. What have I learned in the process? Well, mainly that potty training is hard, really hard. It's going to take time, lots of time. Good thing that we have lots of books, books that take me back to my childhood, and books that make me smile and remind me of what life is all about. Today I was reminded of one of those books that I recently read to her. It was almost a perfect match for the day that we had today, thus the title of this post. If you haven't read this book, please do. It's a must. In it, Alexander had a day where nothing seems to go right. That is just what happened here. Let me start at the beginning. You'll probably want to sit down. It might take a while......

One thing I love and hate about Nate's occupation is the LONG 12 hour shifts that he works three days (and sometimes nights) a week. Last night was one of his long shifts that left me and the kiddos home alone, which is usually not a problem but an enjoyable adventure, but unfortunately I was hit with a migraine - horrible pain, nausea and vomiting, and blurred vision - at the exact same time (lovely).

After getting the kids to bed and taking some migraine medication, I too went off to bed, but found myself restless and unable to relax because of the constant pounding of my blasted noggin. Around midnight I slowly started to relax, only to be awoken at exactly 12:00 by my alarm clock, blaring to life at top volume, lovingly set by one of my children (how sweet). This, of course, woke up Beckham, reminding him that he was always hungry, and making him demand Pediasure. And after getting him a bottle and tossing and turning for a few more hours, I was finally able to drift off to sleep around 2:30. My slumber was disturbed an hour later as I opened my eyes to my tiny 3 year old, demanding that she needed to sleep with me and I, of course, gave in and pulled her into bed with me, thinking that she would quickly fall back to sleep.

I was definitely WRONG...Gwen had another idea.

After pulling her into bed, Gwen quickly turned over to Beckham (who is in a crib in our room because of his steroid hunger during the night) and yelled for him to wake up, and then began laughing and playing on the bed. I sat her down immediately, explaining that it was "night night" time, only to hear Beckham yelling again and demanding more food (oh joy). I once again filled up a bottle of Pediasure and handed it to him to fill his stomach, but soon found him soaked from head to toe from a 10 lbs diaper (you moms know what I am talking about!). This called for the lights to be turned on, a complete diaper and clothing change for the little guy, and, of course, made Gwen even more hyper and ready to play. Mind you, this was all with my pounding head guiding the way. Yeah! But don't worry, I got Beck changed and Gwen did fall asleep...3 hours later (I should know, I was awake for it!).

When Beck awoke me at 9 AM, I turned to find Nate asleep next to me, He looked so exhausted from his crazy night shift in the ER that I forgot about all my exhaustion (yeah right) and quickly took Beckham downstairs to get him his meds - due a half hour earlier...oops. As I went to give Beck his meds, I noticed that one of the bottles was almost empty and required me taking out the stopper to get the last remaining drops. As I did so, I missed directed my aim and sent a fork piercing into my skin (smooth move Kim). I probably would have screamed out in pain if I hadn't smelled a foul odor and realized that Beckham had not only pooped, but blew out (literally) of his diaper all together. I won't go into further detail, but know that this was the blow out of blow outs that would make almost everyone sick, or make my brothers, Nate's brothers, and Haley (it's true) proud to call Beck their nephew. And with this, there is only one thing that I can do: stick him in the bath.

As I began peeling off Beck's clothes and starting the bath water, I heard my screaming, sleep deprived (I wonder why?) Gwen, come into the bathroom. She continued to scream as I bathed him, during which time I noticed something funny about Beck's left hand. His left pointer finger and much of the back of his hand was deep purple, almost black - from a bruise? from a blood clot? from a broken bone? I don't know - and causing him pain. I quickly grabbed him out of the bath and took him into my bedroom (with the screaming Gwen in tow) to show Nate, who agreed that something was not right and then went downstairs, found my phone, grabbed Gwen some milk to stop her crying, and then called the transplant team to talk about his hand. As I talked to his transplant coordinator about Beckham, Gwen, was silent until I heard a huge wail escape her mouth. I turned, expecting to see her throwing another fit, and found her covered in vomit (are you freaking kidding me?). My brain at this time was about to explode - from both the situation and my migraine - but didn't (whew), so I cleaned up Gwen and her puke.

On the transplant teams advice, I trudged off to the doctor with both kids because Nate had to sleep during the day because of his overnight shift. Once there, both kids lost it - Gwen because she thought the appointment was for her, and Beck because he knows the appointment is for him - and I ended up carrying both of them most of the time (if you do the math right, you will realized that that is almost an extra 60 lbs I was trucking around). I'm sure my arms will be pretty sore tomorrow because the appointment lasted for more than 2 hours so that they doctor could make sure he was not missing anything with Beck. The results are that his finger is not broken, and they could not see a blood clot. It looks like Beck must have injured it at some point when we were not looking. Labs were also drawn and his hemoglobin is 10.5 (no kidding) and his platelets are 44 (lower than I was expecting, but the transplant team was not overly concerned by this).

As I drove home from the doctors I pondered over my crazy morning, looked back at my kiddos who both had a sucker in their mouth, and stopped at a fast food restaurant to get the kids something unhealthy to eat because they had had a hard morning. After ordering and receiving their food, Gwen, of course, lost it because she did not want "french fries," Beck cried because I could not get food back to him fast enough, and I smiled because I knew that when we got home, they were both going to go down for their nap.

It is now night, both kids are in bed, and Nate is home to help me. All seems forgotten. Was it a "Terrible, Horrible, No Good, Very Bad Day?" No....but it was defiantly not my favorite. And in the words of Alexander, "My mom says some days are just like. Even in Australia."

Three/Update/Father's Day

Again, I am trying to shove a whole bunch of info into one post. I guess you could say it is my way of multi-tasking.

First off: 3 was the big number for the week in 3 different ways.

1. Our little Gwen turned 3 this week. Yeah Gwen! I can't even begin to describe how much we love our little girl and how thankful we are to have her in our lives. She has literally been our saving grace with all that we have been through with Beckham.

Some fun facts about Gwen:
1 - She currently weigh's 5 lbs less than Beckham!
2 - Her favorite thing in the world right now is Scooby Doo.
3 - She has not yet mastered the art of potty training, but tries to coach everyone else when they are in the bathroom (sliding books under the door for them to read, continually uplifting them with phrases of "you can do it," and giving them a high 5 and an "alright, you did it!" when they leave the bathroom).

Gwen's anxious anticipation to blow out her candles.

...and she finally gets the chance.

After cake, presents, and playing, this is how Gwen ended up spending much of the night. She actually was not feeling too well, and the excitement of the day wore her out.

We love you Gwen! Happy Birthday!

2. Our next big "three" of the week is a HUGE milestone that we have just conquered.... Beckham has now been out of the hospital for more than 3 weeks! Can you believe it? We have not reached this mile stone since February, and to tell you the truth, WE LOVE IT! Now all we have to do is make it past 6 weeks. It has been almost an entire year since we have done that.

3. Our last "three," or something that includes a three, is that Beckham has reached 30 lbs! I'm not going to lie, 30 lbs is definitely adding more than just much needed weight, for Beck is seriously chubby right now....and serisouly cute. Here is the proof:

How many chins can one kid have? Oh, and yes, that is Desitin on his face again. Seriously, why does this kid feel like it needs to be on his face and not his butt?

On to the "update" portion of this post (are you yawning yet?). Beckham had labs drawn on Thursday which, of course, clotted and needed to be re-drawn on Friday. After 4 finger pokes, and three tubes of blood on Friday, I received a call once again from his home health nurse, letting me know that all of that blood had also clotted. She once again came right back and re-drew Beck's blood, but this time from a vein puncture. The results from that blood showed that his hemoglobin had risen to 9.4 (holy crap...that's basically normal for Beckham!), but his platelets had once again clotted. I am guessing that his platelets are basically normal as well because he stopped bleeding from the vein puncture almost immediately after she took the needle out! Crazy! I can't believe that I have a basically normal baby, but I LOVE it! Let's just hope that he stays healthy and does not catch something that will reverse his progress (not the easiest thing since the sick bug has been running through our house, and Beckham is a walking germ target with the steroids, Tacro, and destruction of his B-cells from the Rituxin).

Last, but not least, HAPPY FATHER'S DAY to my afro wearing (note: the afro was cut off soon after this picture), ridiculously good looking, incredibly dedicated, insanely hilarious, and kind hearted husband. Our kiddos couldn't ask for a better father and I couldn't ask for a better husband. We sure love all of you (even the afro!)

Update/Cardiology appointment/ Zoo visit

My mom called me worried, stating that it had been a long time since my last post, and wondering if we were still doing alright. Her inquiry was one of many, which reminded me how lucky we are to have such wonderful people continually concerned and checking up on the status of our little guy. I do apologize for the lack of posts over the last week (or longer) as I have been procrastinating due to the fact that labs seem to constantly change, and I keep waiting for more info. I have also been unable to post because it seems that every time I sit down to type, I am disturbed every couple of minutes by a little toddler, demanding more food (seriously. I have already gotten up 5 times since I started this post to feed my bottom-less pit). And I should also add that there is a lazy factor in there as well (just being honest!).

First off, we are still home. Woo hoo! This is not only a shock to our family, but to his doctors as well. They were definitely not thinking that Beck would make it this long without another hospital visit. Either did we!

Second, I'll give a Beck update (since I am sure that's what most people are curious about). For now, he is doing fairly well and staying stable. Stable is good! During his labs last week, Beckham's PICC line decided to kick the bucket, spring a leak and have to be removed (he had it for 3 months). What a bitter/sweet thing to happen (bitter because now he will have to have weekly finger pokes, and sweet because now I don't have to deal with the stupid thing!). Labs were still able to be drawn from the blood oozing from the hole where his line went into his arm (which only took 5 minutes to stop bleeding...how nice!), which showed that his hemoglobin had risen to 5.8 (small rise, but we'll take it) and his platelets were at 97 (holy smokes!). The doctors were all very encourage by the lab news, saddened by the PICC line news, but have no plans to have a new PICC line placed back in. Labs were checked again this week and showed that his hemoglobin has risen to 6.7 (yeah!), but his platelets were at 13. I literally felt my heart sink when I heard this news. It took three months to get to the 97, just to have it crash back down again. Good thing that my heart was able to recover the next day when I was told that the 13 was inaccurate (whew). The real number is still unknown, but it is definitely over 13. The lab only counted the platelets that had not clumped, and in order for them to clump in that fashion, he has to have a sufficient amount. The thought is that they are probably still around 97(ish). Cross your fingers!

Beck also had a cardiology appointment this week. The transplant team was very pleased to see the change in his color (still pale, but without the yellow tinge) and also pleased to see his HUGE weight gain. Beckham left the hospital at 23 lbs, and now weights 29 lbs. He is a chunk...and I don't use that term lightly. He also had a ECHO yesterday that showed that his heart is working great and tolerating the high doses of steroids and also his weight gain. Beck's transplant doctor is going to have a chat on Monday with the hem/onc team to see if we can start to lower his steroid dose. The plan for now is to be on the steroids for 8 weeks (he's been on them for almost 4 weeks), but we are hoping that this 8 weeks includes his steroid taper. Here's hoping! For now we will not see the transplant team until July.

This how I found Beck after his cardiology appointment. Do you see the size of his cheeks? Such a steroid face.

Lastly, we made a break out of the house to visit the Des Moines zoo last week. The zoo sets aside one night a year for what they call "Dream Night," which is a night just for children with serious and chronic illnesses and their families. All I can say is that it was awesome. The zoo provided food, entertainment, crafts, opportunities to feed the animals (including a giraffe), gifts for the kids, and many more. Beckham was pretty grumpy through out the entire thing, but Gwen was in heaven. It w

Beck spent most of the night screaming in the stroller (except when he was eating!).

Gwen loved the princesses!

Gwen with Nate's sister Haley. We miss you Haley. Hurry back!

Still home to update!

After a whole week (and one day), Beck is still home (knock-on-wood) and is doing as well as can be expected, given the fact that he is still very ill. Since February, Beckham, has not been out of the hospital for more than two weeks. We are sure wanting to break that record. Wouldn't it be great?

Beck and Gwen out for a walk. Do you see him giving one of his rare semi-smiles?

Since being home we have had a great time keeping ourselves busy with lots of appointments for Beck, visits from our families, long walks outside in the beautiful weather, and trying desperately to keep 'Captain Angry' happy and eating. Beckham's steroid rage is in full force, and along with that, his appetite has also kicked into full gear. Beckham now has at least 3-5 8oz bottles of Pediasure a day, along with two during the nights (you can only image how many diapers we go through), and 3-5 meals. When he is not cursing the world, he is screaming for the fridge to be opened, or asking that he can be in his high chair to eat. Truthfully, it's been great to see his appetite back, as opposed to his complete appetite loss when his hemoglobin was so low. His Buddah belly is back, along with his adorable chubby cheeks. We can't help but smile every time we see....even if it is very hard to make him smile in return.

WARNING: The below picture is a little brutal!

Taken during Beckham's first haircut (despite his expression, he was actually really good during it). We needed to get rid of the 'Donald Trump' look (the long, comb-forward hairdo) so we gave him a nice buzz cut. As you can see, he was still bleeding from when he hit his mouth almost two days before. Can you see the color of his blood? Looks like Koolaid right?

Beck's hemoglobin has remained in the 5 range, with the highest being 5.5. His platelets were at 47 last week (I know, don't fall off your chair) and continue to climb. What thrilling news this is for us....now it' his red blood cells turn. His low hemoglobin still makes him quite weak and he prefers to be held much of the time. He also tires very easily (yeah, my heart breaks when I hear him huffing and puffing to climb the stairs) and needs to take frequent breaks. Of course he still finds plenty of time to torment his sister, color on the walls, and climb on the table.

Lot's of meds to add to his list. At this time last year he was down to two meds.

That's it in a nut shell. We will continue to take it day by day, and relish in the fact that we are home and loving it. Thank you for all of those that continue to reach out to our little family. We feel so blessed to have some many wonderful, kind hearted friends and family.

Much love!
-Beckham & Co.

Update 5/28/09

Little to update you on and lots of time....wait scratch that and reverse it....lots to update you on and so little time (remember that line from the original Willy Wonka?). Its been a crazy couple of days that have ended in me sitting in my own home with Beckham next to me. Unexpected right? It was sure unexpected for all of us and in all honesty a little frightening.

Beckham's hemoglobin has been going down slowly (5.5 yesterday and 5.2 today) and his platelets have been rising steadily (they are now up to 33), but unfortunately, for as much as I have looked forward to this, his platelets are not as important as his hemoglobin rising and we would prefer to see them rising just as fast...if not faster. Beckham's liver is also enlarged, causing me to freak out, but the explanation for this is that because of his large hemoglobin loss, his liver has taken a huge hit. It is not a large concern for the doctors, but his liver enzymes were checked and they are in the normal range (which they were not when he was admitted). All of his other labs looked relatively good as well, resulting in the decision for us to go home today. I was quite uneasy with this decision, especially given the fact that Beck's hemoglobin has been lowering everyday, and his threshold for receiving a blood transfusion is if he drops below 5. Because of all of this, I had a LOAD of questions for all of his doctors, making sure to mention all of my concerns. They were all very gracious, but all very unanimous that they think that they best place for Beckham would be in his own home and away from the germ filled hospital. I agree, but I know the odds of us ending right back there are quite high (not trying to be a Debbie Downer or anything) and I don't want to come even close to his hemoglobin dropping into a life threatening range again. The doctors are still shocked that Beckham lived through his hemoglobin dropping to 2.5, and even more that it did not send him into heart failure.

The plan for now is to have labs check twice a week and to return to Iowa City in two weeks for a check up. We will watch him very closely and have a very low threshold for taking him into the hospital. He had a big fall today and smacked his mouth pretty hard. He bled for quite sometime and ran the risk of us having to rush him back to the hospital, but we were able to get it stopped...I just hope, because of this fall, that this does not drop his hemoglobin below 5. Beck will also remain on steroids (oh joy) for at least a month.

I know that I have not made this post sound positive, but I do want to mention that I am thrilled to be home, just uneasy with how sick he has been, and continues to be. But it is worth it all to see the excited expression on his face when he saw us arrive at his home....even if it only lasted a few moments before his roid rage kicked in.

Update 5/24/09

As I am rubbing my eyes trying to keep myself awake, while listening to the Wiggles, while Beck refuses to go to bed (quite shocking as he has spent the last week sleeping most of the time.), I was reminded that I should probably do a quick update to let everyone know how our weekend has been.

Beckham's hemoglobin decided to drop down to 5.4 on Saturday (after his exciting 7.4 level on Friday). I talked to the doctors about this, asking if this was a bad sign, and was told that they actually think that the 7.4 level from Friday was probably inaccurate and that it is more realistic for him to be at 5. His level was at 5.8 today - a small climb, but we will take what we can get. A transfusion is still not planned, as the doctors want to continue to see if his body can replace his destroyed hemoglobin by itself. His platelet levels were also unavailable again on Saturday - even after the "special" way of collecting and running them off to the lab - due to the fact that the lab only runs this "special" test on weekdays. Lame. It was alright because for some reason his platelets were available today and the magic number was 29. Woo Hoo! Can you believe it?

Beckham still remain extremely tired, but making small improvements everyday. He actually walked around the room and out the door to a wagon today (the most he has walked in almost a week). He is also eating much better, throwing up only once a day, but preferring to only drink Pediasure most of the time. I did offer him some pizza yesterday which he gladly excepted, but screamed after almost every bite. I was a little concerned about this behavior, and when it happened again today, I took a look in his mouth a found many large white sores covering his tongue. Both the resident and his cardiologist looked at his tongue and were a little baffled if it was either thrush or something else. Either way, he was started on Nystatin tonight (which he surprising loves). Beck also finished his last dose of IVIG tonight and his steroids have started to be tapered down. Hopefully this will help with his "captain angry" behavior. It is so hard taking him for walks now because people stop to tell me how cute my baby is, only to have Beckham scream and scowl in their face in response (so sweet). I apoligize in advance if he has the same reaction to anyone else.

Thank you so much for the continued support for Beckham and the rest of our family. Thank you also to our Ward in Des Moines for the special fast that they held for Beck. We truly felt the strength from each of you.

Time for bed!
-Kim

Update 5/22/09

Just a few thing to report on for the day.

1. Beck's hemoglobin rose to 7.4 today! What is even better is that it rose without the help of more blood transfusions. We are sure hoping that this is due to the IVIG and the high doses of steroids that he is on at the present (even though his platelets did not respond to either).

2. Platelets once again clumped together during his blood draw, thus making it impossible to get a current level. I asked the question about whether or not this is concerning for his platelets to continually clump, and was told that it is strange, but not totally abnormal. I wasn't very comforted by this answer and asked that Beckham not be released from the hospital (just in case it happens sooner than later) until a they get a current platelet level. Tomorrow they will draw his blood a different way and rushing it to the lab to make sure that they get a current level.

3. Beckham still remains extremely lethargic and sleeps most of the day. When he is not sleeping he is yelling at everyone and their dog, and cursing (baby cursing) them into the next milleneum. I'm a little scared that with all of this steroid anger, that his eyebrows will stay perminantly in a "v" shape from all of his scowles. I was however, told today by the hem/onc doctors that his anger is a good sign and that we should also be seeing an increase in appetite. I sure wish the latter was the case. Beckham still has no appetite and what he does eat (which is usally Pediasure...nasty) he vomits.

4. Beck did get an ECHO of his heart just to make sure that everything was working as it should, and that nothing was effected from his loss of red blood cells (which was a high possibility), and sure enough, his ticker is looking amazing and working like a dream. I know that I have said this many times before, but Beck sure has one amazing, perfect heart.

With all of the these, the possibility of going home is something we all would love, but we are sure being extra cautious at the same time - not to go home too soon, just to be rushed right back (which has happened many times). Beck still has a long way to go, and his body is not recovering from this with the same vigor that it has in previous times. I am still a little worried about how weak and lethargic he remains, and trust me, I have brought that up to each of his doctors (I should just change my name to queen paranoid), but he is in the right place, and I can only imagine what his body is trying to recover from and the amount of time it will take him to get back to his crazy self.

Thank you a million, trillion times for all of the prayers and kind thoughts our way. Especially thank you to all of the people who have reached out to us who have children, or know of children who have suffered from the same, or similar illnesses as Beckham. It has helped so tremendosly. I have talked to his doctors about all of these cases and I am know that they have helped them.

-Beck & fam

Update. Thursday - May 21st

Hello. Us again.

Beckham had a very lethargic day, but his hemaglobin raised to 6.5 and we moved from the PICU to the general floor. We are continuing the IVIG and 'roids for now.

Kim was interviewed on the radio by Ken and Coline from Star102.5 in Des Moines for a Children's Miracle Netwok fundraiser in which she told Beck's story. It was going well until there was a large crash and bang. It was caused by Gwen the Destroyer who somehow managed to crash down their whole kids zone play area and then some. We got calls from friends in Des Moines listening and heard the take down...they said they immediately thought 'Gwen' before the radio dude could even say over the air, "Wow, it looks like Gwen just managed to take down our whole kids area for our listeners wondering what that was". If you know her this story doesn't surprise you.

So hopefully things go well for Beck's levels tomorrow...we will let you know.

Thanks for all your support.

Update 5/20/09

I had a great picture add to this post that was taken earlier today and completely explains without words how Beckham's day has gone, but I am unable to post it with this laptop (Nate has the good laptop with him at the Ronald McDonald House), so I will try to do the same without it. Beckham had a very stable, positive, angry, sluggish, and hopeful day. I'll explain...

Stable: He remained very stable, with labs indicating that the course of action the doctors have chosen to fight both his ITP and Hemolytic Anemia are indeed doing something...whether this continues is still unknown, but we're are remaining very hopeful.

Positive: Beckham's blood transfusions were stopped last night with the plan of checking his hemoglobin in 12 hours to see what his body would do with the new red blood cells (his levels were at 5 at that time). When labs were re-checked tonight, they indicated that his hemoglobin had stayed the same at 5. This was just what the doctors wanted to see, as did Nate and myself. There was actually a wave of cheers from the doctors, nurses, and us, when these results were revealed. Platelet levels were unavailable again due to the fact that they once again clumped in the process. I asked if this was concerning that they continually clump, and was told that this is expected with such low hemoglobin, but I was also told that in order for platelets to clump there has to be at least 20 to do so. At least we know his level is above 20! We'll take that!

Angry: Beckham is now once again full of "roid rage," as his high steroid doses have kicked in, causes him to once again act like an angry teenager, blaming everyone for his problems and taking it out on anyone who crosses his path. We have lovingly nicknamed him "captain angry" during these steroid periods. His steroids have also once again kicked his appetite into gear, which is very welcome because Beck has refused to eat for almost 3 days.

Sluggish: With this little increase in his hemoglobin, Beckham wants to once again move around and act like a normal 21 month old, but is unable to because of the weak state of his body. He did have much more energy than the last couple of days, but he is still quite weak and unable to walk without support. He once again spent most of the day curled up in the recliner watching movies (and making demands to anyone who walks past him).

Hopeful: After it was discovered that Beck's hemoglobin had remained stable at 5, the doctors had discussed transferring us to the floor, but soon decided against it because 5 is still quite a low number and his is still very ill. Tomorrow is the planned date for us to move to the floor if he remains stable and his levels do not drop. We are filled with hope at this news, and can't wait for the next step to be news of taking our little buy and going to our home in West Des Moines.

With all of these things aside, we still understand that Beckham is a very sick baby, with lots and lots to recover from. We also know that this will not be something that he will be cured from completely, but will most likely reoccur multiple times in his lifetime. Of course this is not an easy fact to swallow, and we have cried many tears over this fact (you should see my swollen eyes for proof...thank goodness for make-up!), but I know that Beckham wants to fight, and he wants to live. He is worth every tear, every hospital stay, and every penny that we have....and not just because he is freaking cute!

Lots of love!
-Beckham & Co.

Update 5/19/09 (evening)

To give the best description of what is now going on with Beckham, I will start again from last night....

After being admitted to the hospital in Iowa City yesterday for vomiting, fever, and lethargy, it was decided to wait until today to do any labs. At about 1:00 AM, I asked if Beckham could receive fluids in his PICC line because of his loss of fluids from vomiting, and his refusal to eat or drink anything. Because of this, they had to run tests to determine how dehydrated he really was (to give the proper amount of fluids) and when the nurse pulled blood from his line, his blood was the color and consistency of red Koolade (a very bad sign). The thought was maybe that his PICC line may not be drawing correctly, so they poked his finger and received the same results of diluted blood. They did however get enough blood to see that his hemoglobin was at 2.5, which is a VERY CRITICAL level. He was immediately rushed to the PICU at this time to await more test results and so forth.

This shows how weak he has been the last coupleof days.

Since that time, results have come back showing that Beck now has an antibody attacking his red blood cells, as well as his platelets. It is unknown if it is the same antibody, or if this is something new, something that has been happening for a long time, or if this was caused from his body reacting to the blood transfusions from last week. Either way, this does not change the fact that Beckham now has a condition called Hemolytic Anemia. The Hemolytic Anemia and the ITP combined create a disorder called Evans Syndrome. This again is a very rare disorder that Beckham's transplant doctor has never seen in a heart transplant patient. It will also be a chronic disorder from now on, and will probably be something that will flair up on and off through out his life. The doctors are completely baffled, especially when it seems that his platelets are starting to make a very slow recovery (FYI - platelet levels were not checked today because of the consistency of his blood causing them to clump together). I did ask the question as to whether this was a very bad turn for Beckham, and it was explained to me that the Hemolytic Anemia is much worse than the ITP, and is not something that he could go home with. His transplant doctor is going to research this very carefully and contact other physicians concerning this matter, while involving the hem/onc doctors in everything.

As of today, Beckham has been started back on IVIG, given high doses of steroids, and is receiving very small amounts of blood at a time - large amounts of blood given at once will cause him to go into heart failure when his hemoglobin is so low. He is tolerating it as well as can be expected. He was so weak and frail this morning, unable to even hold his head or arms up, and by this evening (after the first round of blood) he was able to reach for us, and of course, demand a movie. This was actually a welcomed demand for us as parents. He is also on oxygen to make sure that his body is getting the right amount of O2 to all of his organs due to his lack of red blood cells which usually do the job.

Our "Mr. Casual"

The plan for now is to continue with more IVIG and steroids, and possibly Rituxin. Another thought is to also start him on a drug called Rapamune (another immuno suppressant). The problem that this drug poses is possibly sending Beck into rejection of his heart. Because of this, the doctors will have to walk a very fine line between his Prograf and Rapamune, to make sure that he does not go into rejection.

All of this together makes Beck's condition "critically stable." He looks so bad right now, with pale skin with a yellow tinge, and bruises still covering his body. I think this is the worst part - having to physically see how ill he really is. We had somewhat of a 'cloud' around us when he only had ITP, because he could still act normal. But now it is completely different because we can see that he truly is a very sick baby, and our hearts are broken watching him go through this.

Please remember to keep him and the many medical professionals working with him in your thoughts and prayers.

Thank you as always!
-Us

Update 5/19/09 PICU....again

I have been up almost the entire night, so I will try to write to the best of my abilities.

Beckham had a fairly normal weekend filled with play and happiness, but on Sunday his coloring looked off and he was quite fussy, began vomiting, and had a fever. Our immediate thought was that he had caught something while in the hospital last week, so we decided to wait until Monday and book an appointment with his pediatrician. During the appointment, his pediatrician took a look at him and said that he needed to be hospitalized, and after talking to Beck's transplant coordinator it was decided that he should probably come to Iowa City instead of Des Moines. We were checked-in to a room on the floor and labs were run. The first set showed some concern, but his CBC labs (the ones that show platelet and hemoglobin levels) came back abnormal, and stating that his blood was diluted. After 3 more attempts at this level, with the same results, it was determined that his hemoglobin was at 2.5 (critically low) and that he needed to be in the PICU. This is where we are at now. I don't have a lot more info at this point, but I will keep you posted as we find out more.

Please keep Beck in your prayers.
-Kim

Cyclicality

Often times people speak of the revolving nature that our lives, jobs, and interests follow. In health care it is often times found one manner of care or a specific intervention will be presented as 'new' though it was tried, tested, and deemed unfounded many years ago. Then with our human nature it will be revived as "the new standard" which will last until it is once again found to be tried, tested, and unfounded as a standard of care.

Beckham also has found a very specific circle in which he follows. Health leads to viral/bacterial illness which leads to mechanical malfunctions (platelets, clotting disorders, etc) which leads to hospitalization which leads to health and then the pattern promptly continues.

All of this is a completely unnecessary manner to inform everybody that we are back in Iowa City. I'm quite positive a pattern could be formulated which correlated hospitalizations and our mainstay at the edge of insanity. Or maybe while we are at home we just walk a little closer to the line of sanity and we fell off that edge long ago. The latter is more likely or we probably wouldn't be doing so well.

Yes I agree, Kim should probably write our updates.

Anyway, Beckham has been vomiting, febrile, and lethargic. The lethargy is most worrisome because anybody that knows Beckham knows that he isn't one to sit still very long. So we are here tracking down the latest virus/bacteria/etc to hit the poor little guy.

I should go to bed.

Update 5/16/09

Happy to say that we are ALL home again in one piece. Beck is now full of blood, full of energy, and ready to destroy the house again (nothing new). I'm sure that it won't take to long for him to archive this goal...the walls and pantry door have already been exposed of his artwork. Now all we have to do is keep his fingers out of his nose...easier said than done.

We will be heading to Iowa City on Wednesday for more labs that will let us know how he is doing, and where we stand with his antibodies, and platelet progress. We sure feel hopeful after our last hospital visit and his continual platelet climb. We will continue to pray that we keep seeing the same results (minus the low hemoglobin).

Quick Update...

UPDATE: If you read my post (this is Kim) earlier today, it has been deleted because I have to now eat my words about my husband "never updating the blog." In my haste to write a quick update today (I know...excuses, excuses) I only looked at the length of the previous post, and not the content. I did not realized until later that Nate actually did an update. Oops. My bad. Read below for Nate's actual post.

...sometimes we feel like Debbie Downer updating this blog, but here we go again.

Tuesday night Beckham started bleeding from both nostrils (Gwen maintains her innocence) and we could not get the bleeding to stop. Having a child that insists that a finger from each hand needs to be digging for gold during the hemorrhaging did not improve the situation.

Eventually we decided that an ER visit was probably our best option, so Kim took him to the Blank ER where his nose was packed and labs were drawn. Good news is that his platelets were still at 16 - Bad news is that his hemoglobin was down to a lethargy inducing 6.5 which along with a random fever delivered a couple of nights in a luxurious hospital suite.

We should break out tomorrow should all go well tonight, he is now on his third Packed Red Blood Cells transfusion. Another bit of good news is that his platelet count came back at 20 tonight, a high so far. That number was the original benchmark that the staff in Iowa City gave us before we could go home, I'm glad they didn't follow through with that.

But as previously mentioned, we should be home tomorrow, so yeah!

If you would like to end the reading of our posts with a true Debbie Downer jingle salute I provide this link for the sound effects (just click play).

Tchau.

Update 5/5/09

After a quick trip up to Iowa City (if you call 4 hours (there and back) of driving for a 15 minute blood draw quick) we got the news that Beck's platelets have made a jump to 19. That's right, 19! Can you believe it? Neither could we. Now we are only hoping that this is not another quick platelet spike like the last time, but the beginning of a trend...and trend that keeps going up and up. The other lab results showed that his hemoglobin is still quite low (a blood transfusion is still not quite needed), his magnesium is back to normal (thanks to his new magnesium supplement), his "B" cells are still destroyed (so no Rituxin this week), and his IMG levels are back up (meaning that he will need another IVIG treatment soon).

We will continue to hang out at home, as Beckham is still so extremely immuno suppressed and can't be around others. We are actually making the best of the time we spend inside with me potty training Gwen (don't get me started....ahhhh!), trying to teach Beckham to say "mommy" (to which he smiles and says "no" or "daddy." I honestly have no idea why he refuses to say "mommy" when he says almost everything else and even puts words together like "get down," or "here you go"), and enjoying the warm weather that mother nature has finally agreed to send us. Staying inside is never easy, but truthfully we are just fine with it. At least we are at home right?

Thank you over and over for all of the continual prayers on Beckham's behalf, for we have truly felt all of them, and continue to feel them.

Home again!

I like to give ourselves at least 24 hours of being home before I report the news just to ensure that we stay put...which seems to be a rarity now-a-days. But it has now been over 24 hours and we are still home. Ahh yes, is all that I can say.

After leaving the PICU on Wednesday we were told that we would not be able to go home until at least the beginning to middle of this week. But as Saturday rolled around and Beckham regained his energy (and became his crazy self), it became apparent that the hospital would not be the best place for our little guy. So after some smooth talking, we were able to come home, but under the strict understanding that Beckham is extremely immuno suppressed and needs to be on complete lock down (and be extra careful because he left the hospital with his platelets at a 1). Beck is now a walking germ target with his T-cells being suppressed (from his Tacro/Prograf for anti-rejection), his B cells destroyed from the Rituxin, and everything that was drained out of him from the plasmapheresis. Actually, I was told that Rituxin and Pneumocystis pneumonia go hand in hand (great right...just what I wanted to hear). Because of this, Beckham has to take anti-fungals until he is off of Rituxin (which could be months). If you don't see us for awhile you will understand that we are not dead, just contained in home, but happy to be home all the while. We are at least able to take Beckham out into the outdoors for walks and so forth. Now if only the weather would cooperate.....

We will need to return to Iowa City frequently for blood draws to check his B cell levels, to see when more Rituxin will be needed, but hopefully we will not need to be there as inpatients (he still has his PICC line so this will make blood draws much easier). We can only hope for the best at this point and pray that in time Beckham's body will respond to the medicine, have the strength to fight off these antibodies that are invading his body, and stay healthy in the process. You can do it little guy. Kick these antibodies butts!

A great, big, HUGE thank you to my amazing friend Sandi, who went behind my back and started a fund for Beckham. Thank you does not do my gratitude justice, but until I can see her again and thank her in person (maybe we'll have to go have a girls night filled with Michael Jackson karaoke and annoying chick flicks) this will have to do. Also, thank you to all of those who have reached out to our family. Thanks to those who know us well and those who have reached out that have never even met us. We are so grateful, we have been so blessed to make so many new friends.

Kim, Gwen, Beck, and Nate

(BTW, Kim has a phone that works again!)

BABY BECKHAM DONATION ACCOUNT

Friends and Family of the Scadlocks:

What a crazy journey Baby Beckham has had in his first 20 months of life. A journey that we have all followed closely, prayerfully and tearfully. We have celebrated the milestones and gone through the sorrows and the setbacks, all the while amazed at the strength and commitment of Beckham's parents. It is not hard to see where Beckham get his strength from. What an amazing and loving family he was born into. What a lucky boy he is to have parents that are willing to sacrifice every second, every dollar, every ounce of sleep and energy they have for the love and care of their little boy. What an inspiration they have been to everyone who has followed their journey. Countless hours of prayers and blessings have been offered for the health and well being of the Scadlock Family. Support has poured out from friends, family and medical staff on behalf of Beckham and his parents. Nate and Kim have said many times that the have felt this outpouring of love and support and how it has helped them get through some of the toughest times of there lives. As I sat and pondered on all they had been through, I couldn't help but think there may be more I could do. I decided to open a donation account at Wells Fargo where friends and family could donate to Baby Beckham's account. I know that the expenses of Beckham's medical care are adding up and that any financial help would be greatly appreciated. Nate and Kim would be far too humble to ask for this help, so lets take this opportunity to pull together and make a difference for the Scadlock Family. I will keep a small reminder up on the right side of Baby Beckham's Blog. Please pass the word around and please donate any amount you can. Thank you for all your continued prayers, love and support for this wonderful Family.
Sandi and Denim Lyman
If you do not have a Wells Fargo near you have some other options. 1.Visit wellsfargo.com and click on Find Locations this will give you an address of a Wells Fargo near you. You can send a check to one of those addresses. Just make sure you specify in a note that you want it to go to the Donation account of Baby Beckham. Or 2. You can send it to me and I will deposit it into the account. My address is 152 S. 2875 W. Cedar City, UT 84720
A PayPal Account has also been set up. Just click on the DONATE button on the top right of the blog.

Update 4/23/09

This is Beckham's "get me out of here" face.

We made it out of the PICU today and are now settled into our room on the floor (the same room we had a couple of weeks ago). Beckham's platelets were at 6 today, which I have been told is basically the same as zero, but Beckham is a little too active for the PICU and now that he is done with the Plasmapheresis he is no longer PICU status. We'll miss you PICU staff! Thanks for everything.

Beckham will sure miss his little friend Jimmy from the PICU. Jimmy is currently waiting for a heart and has the help of the Berlin Heart to keep him alive at the present. One of my favorite comments from Jimmy was when he asked his mom if after he gets his new heart like Beckham, if his head will be broken also (because Beckham wears a helmet). His mom had to quickly correct him that Beckham does not have a broken head. I thought that was a great thought from a little 5 year old!

Cute little Jimmy, dressed up like Batman, with his Berlin Heart beside him. Keep this cute little guy in your prayers as well.

Beckham had a dose of Rituxin last night and is defiantly feeling the effects from this drug (flu like symptoms - aches, chills, nausia, etc). Rituxin destroys the "B" cells, and as of today Beck has zero "B" cells. The thought is that Beckham's antibodies are attached to his "B" cells, and in destroying them, it should hopefully rid his body of them. The reason that Beck feels so crummy from this drug is that when the "B" cells are destroyed they erupt, releasing the toxins they contain. The doctors will closely monitor his "B" cell levels and keep them at a minimum. The only problem with this drug is that it is very slow to work. That's alright. I'll take slow.

Beckham is still having pain episodes where he screams for hours at a time. I was grateful today that his transplant doctor walked in on one of his episodes and was able to see first hand how bad it really was. One thing that we have found that works to calm Beckham during these episodes is Benedryl. Who would have thought? Other than that, Beckham seems to be doing well. His FOS problem is much better....almost too much better, and because of that we can discontinue the Miralax. Beckham has shown that he is a true man lately as he is so proud of the fact that he can release gas loudly. He actually finds it so funny, that he strains to force out more gas. I found him tonight red in the face and was worried that something was wrong until I heard him pass gas and then laugh. Nice Beckham. What a true male he is.

Thank you so much for all of the continued support. I have been so touched at all of those who reached out to me, letting me know that they would drive or fly out here just so that I could have a break and get some sleep. I know that I will get sleep at some point soon. Nate is currently in Des Moines with Gwen, as she has a cold and cannot be near Beckham. I know that Beck and I can't wait to see them both again. Soon.

Oh, on a last note, I have a broken cell phone so I cannot answer any calls or texts (obviously). You're welcome to e-mail me at: nate_and_kim@msn.com

Update 4/22/09

The last couple of days have been filled with déjà vu of my days with Gwen as a newborn. Gwen had a bad case of colic and would keep me up all day, all night, and leave me feeling that at any moment my sanity was going to snap (good thing she was super cute). It used to break my heart when I would watch her writhe in pain and I would have no way of helping. Beckham has brought those memories very close to the surface as he has continued to be in horrible, inconsolable pain. I have felt that same helpless, heart broken feeling watching him and my lack of sleep is only adding to my state of mind.

After an x-ray of his gut on Tuesday and then again this morning, it was determined that Beckham has a horrible case of FOS (full of sh*# - that's the doctors term and not mine, but I thought it was a great way to describe his problem). Beck's gut is so jam packed full of poop and gas, that he does not even have room to eat (hence his lack of appetite for the last couple of days). He has been given Miralax and suppositories to help with this problem, but that opens up a whole other problem of possibly causing bleeding. The possibility became a reality last night when Beckham had multiple diapers containing blood, and then a large bloody vomit. He is being watched very closely right now, but the doctors do not think that he has an internal bleed, but more like small fissures.

Because Beckham has been in such great pain, he has been given Ativan to help him relax. The only problem with this is that this little guy of course has the adverse effect and becomes SUPER hyper. All I can say is that it has been a LONG week, full of many sleepless nights. I almost reached my breaking point last night as the doctors came in to look at my writhing, baby in pain. I asked that the Plasmapheresis be stopped because his platelets have not gone up and it is not worth it to see Beckham in so much pain. We are not sure if the Plasmapheresis is causing his pain - it is more likely that it is from the Dex (sedative) they use during the treatment - but either way, I honestly can't watch him suffer like this anymore and I truly think that he needs a break. The doctors were wonderful about this and said that they will give him a break, but he will still get a dose of Rituxin tonight.

I should probably have written this when I was a little more rested, a little more calm, and a little more sane. I guess that I am just ready to see the light at the end of this tunnel, and have my little guy healthy and in our home. I know that this will be a long recovery, and I will give Beck all the time in the world. He's worth it...all of it! We sure love him to pieces and are so grateful that despite this whole process that he remains happy and full of spirit.

Update 4/20/09

I'd intended to do a post last night and tell you all about our weekend, but after finally getting Beckham to sleep, the option of sleep for myself looked way too inviting. But after tucking myself in bed and falling fast asleep for an hour, I kissed what was left of my night goodbye as Beckham had another agenda for us. Who needs sleep anyway? I guess I don't, because the boss (aka Mr. Beckham) obviously calls the shots in this place.

Beckham had a very quiet weekend filled with plenty of walks around the PICU, numerous visits to the fish tank so that he could say "shh" (shh is his word for fish), and a small rise in his platelets (Beckham actually hit the all time low in finally achieving zero platelets, and as of this morning they had were at 3). He was also able to make many new friends and capture the hearts of much of the staff as he made himself right at home wherever he went.

Plasmapheresis was started again yesterday and will continue through Thursday. Beckham seemed to respond well to the treatment yesterday, but as he woke up from the sedation he was completely inconsolable and writhing in pain. After Tylenol and a dirty diaper, Beckham, perked up and played the rest of the day until he fell asleep. He woke soon after (this is where we get to the point of my first paragraph) and was again writhing in pain - very strange for Beckham because he is a baby that has always been easy to console - and immediately threw up. I was able to get him to sleep after a half hour, but he woke up again in pain again. The doctor came in at this time and examined him and and was quite concerned with his behavior (shaking, pulling his legs to his chest, red skin, pulling at his lines). He was again given Tylenol and a glycerin suppository (sounds fun right?) and after about an hour he calmed down (with the help of an Elmo DVD, because who doesn't love to watch Elmo at 3:00 AM?). We're still not sure what is causing his pain, and if it happens again then we will need to take a closer look. His Nephrologist (he is the one in charge of the Plasmapheresis) seemed quite concerned with his pain and will discuss it with his team today. A thought is that it could be his magnesium levels that have decided to take a dive during these procedures. He is being given oral and IV magnesium to replace the loss.

I had a discussion yesterday with his Nephrologist about his thoughts on how successful or unsuccessful this treatment has been. He said that he could not give me a for sure answer on this because Beckham is basically a trial case and we are in the wait and see stage. He did however seem hopeful and made sure to let me know that he and the transplant team are not giving up, but are exploring every option. This means, Rituxin will be given again after his Thursday treatment (Typically, Rituxin should last in his body for a month, but the Plasmapheresis pulled out the dose that was given to him last week) and there is also talk of starting him back on Cellcept (an immuno suppressent that he took until August) to help with the ITP. I am not sure it that will actually happen, but I know that his Nephrologist would like this.

I wish that I had more positive news, but this is where we are for the time being. Continue to pray for our little guy. We have been so touched as we have learned of all of those out there that are praying, pulling and thinking of Beckham. Thank you is not enough, but it will have to do right now until I can find away to hug each of you.

Update 4/16 /09

Blurry picture, but super cute none-the-less. Do you like his new shiner under his eye? The doctor commented this morning that he looks like he has been in a cage fight!

Beckham made it through day 2 of Plasmapheresis and so far is doing fairly well despite his unchanging platelet level. The doctors were not looking to see a huge jump in his platelets already (because we have to remember that his body has to completely remake new platelets because the ones the anti-bodies destroyed are gone forever), and are still very hopeful that this line of treatment will work. We can only hope and pray for the same.

Beckham's body has tolerated this treatment in the best way it possibly can, having only minimal side effects - fever, chills, high heart rate. He remains in a constant sedated stated during the treatment, though waking up here and there because the Plasmapheresis drains the sedation out of his body almost as fast as they can give it to him. Because of this, his sedation dose has to constantly be increased. It is very strange to watch the whole process because you can literally see his plasma stripped from the rest of his blood (it is a yellow color, unlike his red blood). It also strips pretty much everything else out of his body and makes him completely immuno suppressed. We have to be very careful with him right now, and not expose him to any sort of illness because of this fact. For now, the doctors are going to give his body a break for a couple of days and then start up again at the beginning of next week.

Beckham also has a pretty nasty cough due to the fact that he was under anesthesia and sedation for awhile, causing fluid to build up in his chest. I had them do a chest x-ray on him yesterday to make sure that his lungs were still clear, and sure enough, they looked great (whew). Beck was also started on Rituxin. This drug is very similar to a chemo drug and has to be treated with a lot of caution. I was not even allowed to throw his diapers away in the normal trash because of the risk of spreading Rituxin. It also almost always causes side effects and at about 2:00 AM, Beckham started trembling, spiked a nasty fever, and again had abnormal heart rates. His Rituxin dose was lowered and he was given Benedryl and Pepcid to fight of his reaction. Rituxin suppresses the "B cells" in your blood stream, and because Beckham has abnormally high amounts of "B cells," the doctors think this would be a good treatment for him on top of the Plasmapheresis.

The rest of us are all doing well and are adjusting to the lack of sleep. Nate and I take turns sleeping at the RMD house with Gwen, giving us time to regain some of the sleep we have lost while staying with Beckham in the hospital. We continue to be hopeful that the treatments that he is receiving will be successful. Beck is remaining happy and cute though this whole thing (did you expect anything less?) and gets comments from everyone on how much they love this kiddo. He sure know how to leave on mark on every one's heart...which probably has to do with his amazing heart that keeps us all going.

Update 4/15/09

It's been another busy couple of days for our little family. Beckham and I made our way to Iowa City yesterday to meet with various doctors and draw labs (his platelets were at 2...big shocker), spend the night in the Ronald McDonald House, and have the central line and Plasmapheresis pushed back until today. Good thing Nate and Gwen arrived today to bring back my sanity and make us all feel like a family again.

Beckham woke up nice and early this morning (5:30. How sweet of him), giving me plenty of time to get ready for our 7:30 cath lab appointment for his central line. It took poking on both his right and left femoral arteries to get the line in (it looks like the right side is still blocked off from his clot in his leg from October), but the point is that they got it in with minimal bleeding. Beck was ushered off to the PICU soon after while still being under anesthesia so that he could remain still during the plasmapheresis which was to take place soon after. Five hours later, and a very agitated Beckham, the plasmapheresis was given. During the waiting period for the Plasmapheresis, Beckham, had found a way to fight off the anesthesia, a dose of Ativan, and a dose of Morphine (sounds just like him). A new way of sedation had to found for him called Dexmedetomidine. It worked pretty swell, given that Beckham fights off pretty much everything else.

It looks like we will not know if the Plasmapherisis worked for a few days. It will be repeated again tomorrow and all we can do is hope for the best. It has been said to me more than once that this treament is a "last stitch" effort to treat this ITP without something more drastic like a spleenectomy. I was also told that they have never treated a pediatic patient, who has ITP, with Plasmapheresis. Beckham is their trial child. Woo hoo!

For now, Beckham is not doing as well as hoped. He is highly aggitated from not being able to move his legs, his hemoglobin has dropped quite a bit so a transfusion is a big possibility, and his heart rate has been rather high. The doctors are not sure if he is having some sort of reaction to all of the meds and blood products that entered his body, or if it is something else. All I can say is that he is defininaty making my heart race also.

Thank so much for all of the prayer, thoughts, kind words, and well wishes. Please keep them coming. Beckham sure needs them. He has a long way to go.

The new plan

After labs yesterday, the results showed that Beck's platelets had only risen to 5. This was an expected result considering his appearance, because in my opinion, he looks worse than when we initially brought him into the hospital. His bruised and battered appearance, his countless petechiae, and his constant flow of blood from his mouth (I mean constant) are defiantly starting to make me uncomfortable and nervous with having him home. If it wasn't for his normalcy, despite his illness, I would have him back in the hospital. The one shinning point right now is that we have a definite diagnosis for our walking bruise. After weeks, waiting for tests results from Milwaukee, the results came back showing that Beckham defiantly has an antibody in his body attacking his platelets.

Because of all the above, a new plan of action has been decided between his various doctors. It looks like Beck and I (I being Kim) will check into the PICU (yup, we just couldn't stay away from the ICU) on Tuesday for a treatment called Plasmapheresis. This treatment is similar to dialysis, in the sense that ALL of his blood will be filtered outside of his body, but in Plasmapheresi, plasma (which contains the antibodies attacking his platelets), is removed from blood cells by a device known as a cell separator. The separator works either by spinning the blood at a high speed to separate the cells from the fluid or by passing the blood through a membrane with pores so small that only the fluid part of the blood can pass through (crazy stuff right?). The doctors do not know if they will do this process for 5 days or 7 days, but the hard part is that it will take hours each day, and during those hours Beckham will have to lay still. All I have to say about that is GOOD LUCK! Anyone who knows my children, knows that "still" is not part of their making.

For this new treatment, Beckham, will need a central line (to carry his blood outside of his body). Because of his huge risk of bleeding, his cath lab cardiologist wants him completely out for this procedure so that there is no risk of him moving, causing excess bleeding. Beckham will keep his central line through out the entire process, as well as his current PICC line. After the Plasmapheresis treatment is done, Beckham, will receive IVIG again and Rituxin. These will hopefully rid his body of any remaining, or newly formed anti-bodies.

Whoa...that's a lot of info and crazy procedures right? I'm definitely on the nervous side right now, but the fact remains that Beckham has to be treated for his ITP. It is a very serious, and scary condition; one that only effects about 100 people per million each year (so very rare, but of course my Beck has to be one of those 100). Beckham's transplant coordinator and I were talking and she was saying that she has seen other transplant kids get all sorts of illnesses, but she has never seen one transplant patient get EVERYTHING until she met Beckham. Silly boy!

Keep Beck in your prayers at this time. He sure needs it. Also, remember this little guy in your prayers as well. He has already received three major surgeries in his three short weeks of life and is fighting so hard to live.

Gotta run....Beckham has once again climbed on the table and is giving me that "look how naughty I am" smiles. What a guy.

Update 4/8/09

On Monday we were given the news that Beckham's platelets had risen a small amount to 6. This was not overly good news, but we'll take what we can get. Because of this, his Rituxin dose was once again canceled and labs were planned again for Thursday.

Beck woke up early yesterday morning, with his face covered in crusted blood (not an abnormal event right now unfortunately) and I reached for him and headed downstairs to clean his face, get his meds, and wait until he could eat breakfast (he has to wait a half hour after meds to eat). As we finally sat down for breakfast I pondered over my "clinically healthy"," but "serverally ill" child. It has been over a month and three treatments later and his platelets are lower than he begin with. Beckham, who acts perfectly well (despite his bruised appearance), is still very ill and unstable, with no end in site. It is hard not to feel that our lives are back to normal with being home, but then I look at my helmet head and remember that he is supposed to be in the hospital, not at home eating cereal and making me laugh. I had to quickly grab my camera and take a video of our little guy just to document how fun and normal he acts.

As the afternoon wore on, Beck's lip started to bleed. Again, this is not an abnormal event (even a small cracker seems to cut his mouth open), but this time I could not seem to get the bleeding under control. After 1, 2, and 3 hours of bleeding (active bleeding), I decided that something had to be done and I called his HH nurse, who advised me to take him to the ER for a dose of platelets - which his body will just eat up, but they will give him just enough boost to stop his bleeding. I went to grab Beck and found him sound asleep on Gwen.

SO CUTE! What was even more cute was the fact that Gwen was allowing this.

I rushed Gwen to a friends house and then Beck and I made our way to the ER, where we were immediately rushed back (thanks to the fact the EVERYONE knows Beckham in the ER) to a room. By this time Beck's lip had magically stopped bleeding (seriously, go figure!), resulting in me feeling stupid for bringing him into the ER in the first place (the doctors told me that I should not feel stuipid because Beckham is truly sick and needs to be in the hospital). Labs were then taken (luckily he has his PICC line so he did not need to get poked) and tests were run, showing that his platelets had dropped down to 1. This was not a huge shocker given his extra bruised, petechiae covered body, and his endless bleeding from his mouth (the nose is taking a break from bleeding right now...how thoughtful!). And after a couple of hours and some smooth talking on my part - convincing them that even though he needs to be in the hospital he is just as safe at home - we were able to go home.

It looks like labs will be drawn again on Thursday and then we will make the trip to Iowa City on Tuesday for Rituxin. I can't see anyway of avoiding this medication now, because dispite the risk it poses for him, the fact remains that he needs it. We'll do what's best for Beck.