Hemoglobin is moving in the right direction!

It's taken me a while to update, but it's better late than never, and better yet, it's good news!  Here you go!

On Monday (5/14), Nate and I took Beck to the hematologist at the U of I Children's Hospital.  After a blood draw, Beckham's hemoglobin came back lower (7.2), which was not unexpected because of his pale skin and low energy level, but we also got a shocker of his EBV (Epstein-Barr Virus, aka: Mono) coming back slightly positive.  EBV is not a good thing for a transplant patient - it can make them really sick and it can sometimes cause tumors to develop.  Luckily, Beckham's EBV markers were very low, and so low, that the transplant team would not necessarily consider him having acting EBV.  But because he is symptomatic, there is a good chance that the little bit of EBV in him is making him sick and could be the cause and explanation for all that's been going on with our little guy.  So, of course, we weren't thrilled with this news, but it could have been a lot worse and at least now we had a treatment plan.  Beckham was scheduled for IVIG right after the appointment, Nate stayed with him at the hospital, and I went home to put the baby down for a nap.

After returning home, Nate called and said that there were some mysterious charges on our debit card.  I took a look, and sure enough, someone had stolen my debit card number and had gone on a shopping spree, completely emptying out our checking account (awesome).  I made a few phone calls to the bank, the police, and to the stores that had purchases from our card, and after a few days, all the money had been refunded.  Gotta love thieves, right?

By Wednesday, Beckham was actually perking up and had a little pink in is cheeks.  We were thrilled by this development and hopeful the IVIG had worked its magic.  And when his labs were checked again on Friday, his hemoglobin had risen to 8.4!  Yeah!  With such good news, we felt a celebration was in order, so I strapped Blythe and Beckham in the double stroller and set off on a walk to pick up Gwen from school and then stop off at the park.  Unfortunately, while walking, I had to maneuver around some sidewalk construction, and when I got to the other side, I did not notice a cement dust mud puddle that caused me to slip, try to stop my fall with my arm, dislocating my shoulder in the process, and tipping the stroller backwards, causing the kids to be completely upside down.  The worst part was that I could not set the kids upright because my uninjured arm was wedged underneath the stroller and my dislocated arm would not move either.  Beckham kept staring at me, saying, "um, Mommy, I think you need to pick me up."  Fortunately, a nice man saw me fall and ran over, picked up the kids, and helped me call Nate for some help.  We're all doing a better now...a little sore, but much better!

As for this week, Beckham had labs on Monday which showed his hemoglobin at 9.2!  His EBV was checked again, and if it comes back at all elevated, than IVIG will be repeated.  At this point, we have not heard the results, but Beckham is not considered contagious, and I sent him back to school on Tuesday so that he can enjoy the last 2 weeks of school.

Thank you all for the prayers, thoughts, and kindness that has been showed to our family over the past few weeks.  I feel this huge sense of relief and gratitude in my life, knowing that our little guy is not relapsing back into his Evans Syndrome.  What a blessing...a huge, enormous, gigantic, incredible blessing.

-Kim

Slow and steady hemoglobin decline

Everyday I postpone updating thinking that maybe by tomorrow we'll know something more about what's going on with our little guy.  But every tomorrow turns into another tomorrow, which turns into another tomorrow, which turns into another tomorrow, and eventually, a week or two has gone by and we're still without answers....which, obviously, is where we are now.

We saw a hematologist last Monday to try and get some answers and get her opinion on what's going on with Beckham.  Her initial thought, unfortunately, is that he is relapsing into his Evans Syndrome and maybe even his Glanzmann's Thrombasthenia (yikes), with a small chance that it might be a virus that is causing an anemia reaction.  So, after a slew of blood tests (poor Beck has been poked so much lately that when the nurses walk in, he just points to his vein that draws the easiest, holds out his arm, and then lets tears roll down his face because he knows it's inevitable), they showed that his hemoglobin was down again (7.9), his hematocrit was low, his WBC was low, but everything else was fairly normal.  However, a strange thing did come out of the tests which was that his IGG levels were normal and he tested negative for the DAT (coombs test) - both of which have always been out of whack and positive when he was relapsing and have been a confirmation that he had hemolytic anemia or another blood disorder.  So, does this mean that he is not relapsing into him Evans Syndrome?  No.  But it does make it more possible that something else could be the culprit causing his anemia, and because of that, more tests were ran testing for CMV, EBV, (and whole slew of other things) and retesting for the Parvovirus.  As far as I know, most, if not all, have come back negative.  I'm not quite sure how to feel about that.

I snapped this while we were at the circus last week.  Doesn't Beck look pale next to everyone else?  

Don't I have one seriously good looking family?

As the week progressed on, Beckham continued to get more pale, more tired, and his diarrhea returned with a vengeance.  I called the hematology team on Thursday to let them know that I was worried and that Beck did not look well, and the doctor asked for labs to be re-drawn.  The labs showed that his hemoglobin was down a few more points at 7.6, his platelets were 525 (wow, that's high) and his hematacrit was lower (I can't remember the exact number).  They instructed me to keep a close watch on him over the weekend, keep him away from people (a illness right now would not be a good thing), and to bring him to the ER if he spiked a fever or anything else happened.  We'll see the hematologist tomorrow morning and if his counts are lower again, then I'm hoping and praying that we'll come up with some sort of treatment program.

I'm not going to lie, I've been a basket case and have had many melt downs over the last little while with Beckham having health problems again.  I think that I got so comfortable with him being stable and with me being able to be a normal mom, that I got a little out of practice with being able to handle the stress of a sick child while being able to be a mother to my other children and a wife to Nate.  It's never easy, nor will it ever be easy to watch your child suffer and it's something I'd never wish on anyone.  I find myself checking on him constantly during the day and night, making sure that something has not gone wrong.  And it's made me physically ill just thinking about him having to go through the treatments to rid his body of this disease.  I hate it, I mean I really hate it, I mean I really, really, really hate it.  But, I cannot change the fact that this is how Beckham was sent to the earth and this is how Heavenly Father wanted him to come to me.  And, truthfully, I would not change that fact because Beckham is perfect and loving and happy and lives a completely normal life.  He has changed and taught us all, and I'm just grateful that he was sent to me.  He is mine, as with the rest of my beautiful family, and I'd do anything to keep him....even if it means becoming a basket case and having a melt down or two!

I'll update when I know more, but for now, please keep little Beckham in your prayers, he could sure use them.  Enjoy the below message.  It made my night to watch this and brightened my day!


-Kim

Lowered hemoglobin...bummer!

I know that I've left everyone hanging on a limb (sorry),....but the truth is, that I am also on that limb and I'm just as anxious for answers as you are.

The good news, Beckham is home from the hospital and has been so for over a week.  And, the other good news is that his vomiting has ceased, his diarrhea has slowed down, he is eating well and he is gaining a little weight.  And while we are thrilled with all the "good" that's been happening, there of course, has to be "bad." And the "bad" is that his hemoglobin has continued to drop and drop and drop.

After getting home from the hospital, Beckham seemed to perk up and resume back to his normal self.  And by the start of last week, we decided to send him back to preschool because all of his tests were negative and the only thing the doctors could find wrong with him, was low hemoglobin, which wasn't too low and it did not seem to be a reason to keep him away from school.  But, by Thursday, Beckham came home and was not acting normal, and by "normal," I mean that he was not bouncing off the wall, singing The Wiggles at the top of his lungs (yes, he's still obsessed with The Wiggles), or tormenting his sisters (his new favorite past-time).  And within a few hours, he was laying on the couch, lethargic, and had a fever of 101.  I gave him Tylenol after that, but his fever only went higher to around 104, which caused us to have to give him Ibuprofen (that is a transplant patient no-no).  The Ibuprofen worked, and by 3:00 AM, his fever was gone.  The next day, he woke up happy and full of energy, but again, a few hours later, his fever was smoking hot, he was miserable (and SUPER grumpy), needed to be given Tylenol, and then, hours later, he was fever free again.  This pattern went on and on throughout the entire weekend - happy, lethargic, high fever, happy again - with no other symptoms to accompany it.  We debated on taking him into the ER over and over, but we knew that they'd probably just keep him over night, run a whole slew of tests (that would probably come back negative), send him home the next day, and then send us a big fat bill for the whole ordeal.  I did, however, take him to the doctor, and after labs, it showed that his hemoglobin and WBC had dropped, but everything else was normal.

By the beginning of this week, Beckham looked terrible; his coloring was so pale and yellow and he had no energy.  I took him back into the doctor, and after another slew of tests, the thought was that he had the Parvovirus (slapped cheek disease), not only because of his symptoms, but because Blythe had mysteriously broken out in a rash that looked just like Parvovirus.  The Parvovirus is very mild in normal children, mostly presenting itself by a rash and sometimes a fever.  But in people with an anemia problem or a compromised immune system (Beckham has both...awesome), it can stop the production of red blood cells, resulting in a drop in hemoglobin.  When the tests came back, they showed that his hemoglobin had dropped again (bummer) and that he was negative for the Parvovirus (bummer, too).  We were actually hoping that he would have the Parvovirus instead of an unexplained hemoglobin loss.

So, basically, we're back at square one with no answers.  Beckham's hemoglobin is slowly lowering and we are not sure of the reason.  The best explanation (and one I pray is not the cause) is that he is relapsing into his Evans Syndrome, but his transplant doctor still hasn't ruled out the possibility of the Parvovirus, thinking that he might have had a false/negative test result.  The good news?  His platelets are stable!  Actually, they are better than stable; they are high at 458!  So, from here, the next step is to meet with hematology again, which we have planned for Monday.  I'll keep you posted on the findings, but until then, I'm going to try and think positive and hope and pray for the best outcome.  And, who knows, maybe, by some amazing twist of fate, his anemia will resolve itself!  It could happen, right?

It's been a while, but we're in the hospital

I should probably title the post, "It's been a while for both being in the hospital and posting on the blog, in general!" Yikes. I know that I am terrible at posting, and I promise that I think about it all the time. But, thinking and doing are two very different things. Awesome.

Anyway, back to the point of this post. If you guessed from the title of this post, yes, Beckham is in the hospital. It has been a year and a half since his last hospital visit (woo hoo) and we've been thrilled to be away. But I guess that, for some reason, we were due for a visit. Either that, or Beck was just craving hospital food (gag). So to explain everything about this visit, I'll have to go back a few weeks.

Beck was potty trained just over a month ago (I know, it's a miracle!), and since then, he's had non-stop diarrhea. At first, I figured it was because he had a big med change, but after adjusting his dose twice over the past month, we knew that wasn't the case. And last night, his diarrhea escalated to vomiting.....which is never a good sign for Beckham. So, at that point, I knew that the hospital was calling our names and Beck and I headed over and left our Gwen and Blythe with our awesome neighbors. Luckily and thankfully, Nate was already working at the ER and was able to be with us the entire time.

And the results? Well....we're not quite sure. It was determined last night in the ER after an x-ray, that Beck had a bowel obstruction. But after the pediatric surgical team and the radiology team reviewed it, they were not so sure. Most of his tests for a virus were negative or are still pending, but I'm pretty sure they will be negative. And most of his general labs were great, though his hemoglobin was the slightest bit low a 10.2. Another thought is that there is something wrong with his liver; a ultrasound is planned to check all over his liver. And the last thought (which I am praying so hard that it's not) is that his Evans Syndrome might be acting up. On the upside, though, his beautiful angel heart looks awesome. So, basically, we're just waiting for results. But in the meantime, Beck is pooping, puking, losing weight, passing huge amounts of gas (nice), and (this is super gross) all the gas is pushing both out of his back side and coming out of his mouth. Seriously. Every time he burps, it smells like the most foul fart. He literally cleared the ER room last night with his burp. Nasty! I bet you're super glad I shared that! This is a totally weird thing, and that is another reason they are not sure what is wrong with him.

So, if you could, say a little prayer for my little guy tonight. Even though he's being spoiled rotten and being waited on hand and foot here in the hospital, we'd all rather be home (him included). Plus, he's way too cute to be in the hospital, don't you think?

-Kim