Saturday, June 2, 2012

2 Laps

It sure has been a whirlwind of excitement in Xander's room over the past couple of days. Here is the update:

Echo and EKG tests in his room are convenient and give us a lot of information about his condition quickly. Today, we learned that Xander's heart looks good and the amount of fluid coming out has minimized. The drain is working and is free of any clogs. The heart is working normally. There is still inflammation in the pericardium, which is partially what is causing Xander so much pain. The drain itself is also painful to have in place. As Aaron said last night, this is the most pain we have seen him in thus far. This wears on our hearts, but this is when the morphine is very useful. He is on a pain pump and can use it when needed. He doesn't like having to use it, but he doesn't tolerate this type of pain at all and is being smart about when to "push the button." So the best part about Morphine (not) is that it makes him extremely cranky and agitated (extremely). Aaron has had lots of experience in this department and is able to talk with Xander about the pain and how to cope. We are really working with him on his breathing and his healing energy and how to use it to calm his body to give it a chance to heal. He will focus on this for short periods of time, but needs to practice more. His head is in a good place, he can see himself getting better. He made it out of bed today! This is amazing considering the amount of pain he was in earlier in the day. He made it 2 laps around the 7th floor. He didn't even complain about doing it and felt good after.

Xander's condition is evaluated on an hourly basis. The nurses on 7 East are well...... simply the BEST EVER! As Xander has the ultimate bad attitude, they persevere and get him to take his meds, clean up his emesis, advocate for him, and so many others.... and smile while doing it. We are there 24 hours a day too, making sure that he gets opportunities to heal, while balancing the need for invasive procedures and more medications. What an enormous balancing act!

What about those White Blood Cells?

On Thursday, Xander's counts had fallen - but this was expected
WBC: 1.5
ANC: 1.1

So, they gave him one dose of neupogen on Thursday and this brought him up to
WBC: 7.1
ANC: 6.5

The Docs say that this is really great feedback because it means that his bone marrow responded to the neupogen and were forced to release the neutrophils and wbcs into the peripheral blood that had been made by the marrow. If we didn't see this respond, it could indicate bad news. So.... we were elated to hear this good news! He will most likely need this shot again and will eventually balance out these numbers on his own.

Dr. Connelly mentioned getting Xander home soon. I want to have him home, but I am so thankful that we did not leave and have to come back the next day. When you leave the hospital after a BMT, you become an "inactive" BMT. This means that you don't get the same services as he gets now (most importantly the specially trained nurses and all blood draws are done by phlebotomy staff).

It's always good to talk about blessings in our day.

A heartfelt thank you to all of the knitters and sponsors who are supporting us in the knit-a-thon tomorrow.  Hope to see you there!

Peace and Love


  1. Hello Everyone,

    We are sending our prayers and love to you always. My mom had the same problems with fluid in the heart and had to have it drained, etc etc. It's a very trying time. I pray that you all make it home soon safely and without pain. The pain is the worst. But it sounds like you are managing it well. Doctors are amazing. I remember when i was taking my mom home, we were so happy, (and I was so happy but also scared/nervous), but nothing can compare to being home!
    with much love and strength to you all,
    the Horners

  2. Hey there you all,

    We are so sorry that the past couple of days have been so hard. We think about you constantly and send you love, strength and prayers. I spoke with a mom from the 7th grade (Susan, Christopher's mom) who is adding you on to a prayer group of 700 Feng Shui experts worldwide. I'll forward on the details when she send them to me.

    We are so happy that your bone marrow responded to the neupogen with such gusto. That is a great thing!

    Love to you all,

    the Lowensteins

  3. Oh, kids. I wish I was there to help you through this but I do understand. We've discussed it. G-d willing, we'll see you in a month and can lend a hand.