Transplant Anniversary

It's always harder for me to find time (or to make time) to write a blog post when Beck is out of the hospital. It seems like I always have one more thing that I need (or want) to be doing instead of sitting in front of the computer, writing something about our small family. But a huge milestone was just made by our little Beckham, and I cannot let another day pass without sharing this with everyone, for it has now been over two years since our little guy received his precious gift of life, his new heart.

Most of my mornings are spent outside walking my two children in their double stroller. This is such a peaceful, stress relieving out for the three of us, giving us something to do besides sit indoors all day, trying to stay away from germs. Yesterday in particular was one of my favorite walks - the air was warm, there was a cool breeze blowing, the humidity was low, my children were not screaming at each other, and there was no one else to bother us. And as I pushed the stroller, while my children enjoyed their fruit snacks, I looked down at Beckham (who was laughing at himself) and this is what I saw:

Which soon escalated to this:


For those that don't know, my son has absolutely no liking for anything sweet, and I was only fooling myself to think that he would eat a fruit snack (which Gwen was happily scarfing down like a normal child), and not find other ways to put it to use. With this, Gwen and I had a big laugh (Beckham was also laughing at his new talent), and I grabbed my camera phone to record this moment in history. I then smiled and chocked back a few tears (I'm such a girl) because here my little boy sits alive, sticking fruit snacks up his nose, loving his life to the fullest, while an angel heart sits in his chest, giving him life with every beat.

We don't have the words to say how much we love our Beckham and the heart that beats in his chest, nor do we have the ability to fully express our gratitude to the Campbell family, who chose to donate little Jake's heart when he was taken from them. But we do have the opportunity to let Beckham live each day to the fullest, and never forget what we have been given. Because of this, I wanted to share some pictures of little Jake which the Campbell family has so graciously given us permission to do so, so that you can put a face with the heart that now resides in Beckham. One thing we know for sure is that this heart was so loved before if ever came to us, and we can only image how full Beckham must feel having it in his chest.

We love you Andy, Holly, Ben, and Alex. We are so grateful to have you in our lives, to share Beckham with you as he lives each day because of Jake and your selfless choice.

-Kim, Nate, Gwen & Beckham

Update 8/15/09

Just wanted to let everyone know that we are home from the hospital and are mostly puke free. The doctors are still thinking that the reason for Beck's vomiting is steroid withdrawals and because of this, Beckham, has been switched from Prednisolone to Cortef, which is supposed to be much easier on the gut (but much worse in taste - you should see little Beck try to swallow this. Poor kiddo!). He will be slowly tapered off this over the next couple of months and then we will meet with Endocrinology again for evaluation.

On another note, the rest of Beckham's hematology labs came back and showed that he still tests positive for an antibody that is attached to his platelets (which was the reason for his ITP in the first place). This basically means that Beck would bounce right back to his ITP and Hemolytic anemia were it not for the steroids and Rituxin infusion. His transplant doctor is hoping that the destruction of his B cells from the Rituxin will be enough to keep his ITP and Hemolytic Anemia from returning once he is taken off of the steroids....but only time will tell. But, his B cells will remain destroyed (through more Rituxin infusions when needed) until he tests negative for the presence of an antibody, which could be for a year or more (who knows). It looks like it will be a long time before this little guy can venture into the outside world (or the rest of us!). Let's just all pray that Beck's system will remain strong with only the Rituxin and not steroids, because he has to come off of steroids. They are too much for a little guy like Beckham to be on for an extended period of time. He is already pushing his limits as it is (that is showing because of his inability to come off of them).

Oh, just to clarify my statement in my last post: the reason that the Des Moines Hematologist does not completely think that Beck has Evans Syndrome is because she believes that his Hemolytic Anemia and ITP were caused from his Tacro (anti-rejection med), which his transplant doctor disagrees with. Because Evans Syndrome is a reoccurring syndrome, and incurable, we will again have to wait and see if it returns and then, if it does, then they will know for sure that he has it. Make sense?

Thanks for all of the continued prayers for our little guy! They mean so much.
-Beckham & Co.

Update 8/12/09

I'm sure that the "update" title is usually an indicator of a hospital post for our little guy, so I'll just skip right to the point and say that Beck is back in the hospital for the same symptoms as his hospital stay a couple of weeks ago: puke, puke, and LOTS more puke. Yuck!

Beckham's very slow steroid taper began again last week and as it did, his body quickly showed signs of not being able to tolerate it with a loss of appetite and loads of puke. Yesterday his vomiting got out of control and we knew that he was destined for a stay at his second home....I mean the hospital, where he still remains and probably will remain for the rest of the week. The crazy part is that all of his labs in the ER were normal (except for showing that he was dehydrated): Hemoglobin - 12.9, Platelets (which did not clump) 290, WBC - normal (I can't remember the exact number), etc. Can you believe it? My baby boy....normal....who would have thought? All of this pretty much rules out a virus (hopefully) and the thought, again, is that his body is not tolerating being off of the steroids, but, just in case, the doctors are also ruling out everything else. This means blood work (to rule out CMV), GI doctors being called in for an abdominal ultrasound (which showed nothing out of the ordinary) and possibly more tests (looking for ulcers or other things that could have been caused by steroids), and the addition of the Endocrinology team.

Beck got a large dose of Cortisone at about 1:00 AM this morning and his steroid dose was increased with his morning meds to help with his nausea. This definitely seemed to do the trick as Beckham woke up at 5:00 AM as a crazy, hyper boy, ready to run down the hospital halls like a maniac. He was so crazy that we could almost not keep up with him with his trailing IV pole that was attached to his arm. After a while, he got so sick of being attached to the IV pole that he ripped his IV out of his arm again. Oh well. Lets hope he can keep up his fluid intake without the help of IV fluids.

The plan for now is to wait for the rest of his tests results and then go from there. The doctors are almost positive that Beckham is vomiting because of the steroid withdrawals, but they will make sure of the fact first. There is a test that can show if your body has whacked out cortisol levels (produced in the Adrenal Gland, which his steroids suppress), which would prove that Beck's vomiting is caused from his long term steroids use, but the test would for sure come back inaccurately positive because he has been on them for so long. But if Beck does not have issues anywhere else than the Endocrinologist would like to completely switch Beck from Prednisolone to Cortisone, and taper it slowly over months, which will be much easier on his body.

Also, I should mention that Beck had a consult with Hematology here in Des Moines and a couple of things came to light during that visit. 1 - That blood tests still showed that Beckham tests positive for an antibody in his system. 2 - That if he comes off of the steroids, he will run a HUGE risk of rebounding right back with the ITP and Hemolytic Anemia. 3 - The reason why his platelets always clump may be because his antibody is still attached to his platelets and cause them to clump. 4 - Beckham may not have Evans Syndrome even though he has most symptoms and criteria. And 5 - She (meaning the hematologist) believe (like the hem/onc docs in Iowa City) that Beck's ITP and Hemolytic Anemia was caused by his Tacro/Prograf (anti-rejection drug).

I think that I covered most of the needed information, but I could be wrong, but that could be because I spent most of last night in an ER, slept in a hospital bed with a crazy two year old that was attached to an IV that beeped all night, and was woken before 5:00 AM to a hyper kiddo that as ready to reek havoc wherever he went....and talk to his many friends on his Banana phone. So cute!

Scaddy's!

Hey everybody, this is Nate and (sometime next week between the 17th and the 20th) my parents are opening a new restaurant in downtown Salt Lake City called Scaddy's. It is a family owned and family ran establishment that is going to boast an amazing breakfast menu, continue the Legacy of the Wayneburger, and provide the freshest food in Salt Lake (everything made to order and even the fries will be home sliced in the store).

What can you do? Well until it opens you can help us get out the word.
First, by telling your own friends and family in Utah about Scaddy's.
Second, by becoming a fan on Facebook.

Scaddy's on Facebook

Then in the next week we will make sure and announce opening day with the hopes that all of our Utah friends will make the visit...you'll be glad that you did (If you aren't a Utah friend you are still invited, but we understand if you don't plan your summer vacation around this).

Where can you find it? I'm glad you asked...
1846 South 300 West...right by the 21st Street area Costco just off of I-15.

We are excited, Scaddy's is going to be great. And make sure to become a Facebook fan...next week we will be having contests giving away coupons for free food!

Scaddy's - Fresh Taste is Everything!

Two is he and he's home...Yipee!

Yes it's true, Beckham is both 2 years old and he's home to celebrate! What a guy right? Let's start with the hospital update first so that we can end with his birthday.

After a few days in the hospital, Beckham's vomiting lessened (he still pukes...but not as much) and most of his labs all came back as normal. We were still waiting on his Tacro level, but the doctors agreed that Beck (who was running around like a manic) was acting well enough that he could go home and that agree to call us later with the level. With this news, we did not hesitate and headed right home to hopefully enjoy a quite birthday weekend. So far all has been...umm...well...relatively quiet, despite a quick trip to the doctor because Beck's lower "male area" was severely swollen, and another quick trip to Iowa Radiology so that an ultrasound could be done to make sure that everything was alright with his "man hood." And as it turns out, Beckham has a severe case of FAT lining his lower area. We did not notice this before because his stomach was so distended and it hid his lower chubby extremities, and now that he has lost a couple of pounds it looks larger than it actually is. So all in all, there is nothing to worry about. Whew!

On to our birthday boy! First, a great, big, HUGE, Happy Birthday to our amazing baby....hmm....I mean toddler, for he is now 2 years old (can you hear me sniff as I write this?) and no longer a baby. Here's a couple of pictures of the big day. Note: the charger on our camera is broken and OF COURSE, it is not in stock in any stores in Des Moines, so I had to take the pictures with my phone. I apologize for the quality of the pictures in advance.

After a hearty dinner if Pringles....

Next came the cake.

Beckham has absolutely NO sweet tooth (fruit, cookies, cake, candy, etc.) and when we considered what to do about a birthday cake, we were a little stumped. The only idea we could come up with was a huge Oreo because Beckham will sometimes eat them. Guess how much he at of his piece of cake? ZERO! Now that's self control for you.

Beck opening his presents. He showed almost as much enthusiasm as his cake when it came to opening his presents. It was a good thing that Gwen was close by and showed Beck how a pro opens presents.

I could not get him to hold still long enough for a picture. I guess that's what you get when you take a picture with your phone!

And there you have it; that was about it for his birthday. I know that we look like lame parents for our party planning skills, but truthfully, I don't think that Beckham would have wanted it any other way. That's our little guy, our two year old, our living miracle, that we love so much and are so thankful that he is ours!