Great news for Dell

    • Anonymous
      March 26, 2008 at 2:04 pm

      If you have been following the post I wrote regarding Dell’s CD4 counts, we have ended this horrible experience with the best news possible.

      Dell has had a port since around March, 07. His ONLY normal draw was Feb/07 when he did not have a port. The next draws were taken in March 08.

      The immuo. and neuro. were very upset with his CD4 numbers. They were as low as a patient that has primary immune deficiency or like a HIV patient. The immuo. even put him on an antibiotic to keep him from getting sick.

      On Saturday, I awoke to a post from the immuo. that was done at 1:43 a.m. He said he did not think Dell’s numbers were correct and HE WAS RIGHT. He stated when he was doing his residency at LSU, they never took flow cytometry from the port.

      Monday, I went to our local hospital and did CBC and flow cytometry from the elbow. The numbers are wonderful.

      When we last saw the immuo., his CD4 was 300. Now, by drawing at the elbow, it’s 1200.

      The neuro. called me later this morning, after we had gotten the good news and I told him about the port draws. He was very shocked. He wonders now how the other numbers are effected, ie. SED rate.

      I guess the only way to know is to do a port draw, then a periphial at the same time. Those of you with ports, I think you need to speak with your doctors regarding your draws. Dell can not be the only patient this affects.

      I can’t thank you enough for your help and all the prayers that was said for Dell. I have felt your love and could not get through all these trying times without my forum friends.

      Love, Lori

    • Anonymous
      March 26, 2008 at 2:30 pm

      Wow, what a simple solution to a potential mess of a problem! I will certainly keep that in mind, I didn’t even think of that. Well congrats are in order!

    • Anonymous
      March 26, 2008 at 2:31 pm


      What wonderful news!!! I am so happy things have worked out and Dell is doing great. God’s blessings!!

    • March 26, 2008 at 3:18 pm

      Awesome news, I will remember that when Kevin gets a draw. Would you say the draw should be made from the port with no salene as well, on the first day prior to start of the infusion? Are you guys going to start the rituxin again now that the numbers are good? Any new ideas about the diaper rash? Could it just be a fungal infection that cidpers are suseptible too? I think Norb, Stacy, Kevie and some others have had some fungal issues at one time or another.

      Thanks to God for getting Dell and your family through this, and thanks to God for giving doctors the intelectual abilities to help us!
      Dawn Kevies mom

    • Anonymous
      March 26, 2008 at 3:46 pm

      What great news you have for us. 🙂


    • Anonymous
      March 26, 2008 at 6:39 pm

      Good news Dells Mom!

    • Anonymous
      March 26, 2008 at 8:26 pm

      Thank you for all your posts.


      I don’t know what we are going to do about the port draws. I think we should do a few elbow draws and port draws and compare them to one another.

      I’m also going to write the immuo. to see if he will write a letter to the hospital medical staff explaining what happened with Dell. He is not part of the hospital where all the draws took place. It’s 1 hour away. I think the letter would look more “official” coming from him. And another thing, the administration already doesn’t like me.

      Regarding the butt, I honestly don’t know. I think there are some questions we will never have an answer on and the butt could be one of them.

      We will not do the last Rituxan treatment. We did 3 and his CD 19 count, the one the B cells attach too, the lab count showed “not detectable” so the chemo has done it’s job. The 4th treatment, in my opinion would be for nothing.

      Love, Lori

    • Anonymous
      March 26, 2008 at 11:49 pm

      Lori, That is Wonderful News!! I bet you All are sooo relieved! Give Dell a Hug for me.:D

      I sent you a pm.:)

    • Anonymous
      March 27, 2008 at 7:50 am

      Good news is always so helpful to get the day started but it’s just absolutely GREAT news when it involves our little guys on this forum. I’m very happy for you and Dell.:D


    • Anonymous
      March 27, 2008 at 7:53 am

      Dear Lori!

      I’m so happy and relieved on your and Dell’s behalf! I understand that the procedure when taking Dell’s blood-samples were done inadequately, and thus gave very wrong results – but have I understood it corrcetly when it seems to me that the drew the blood for sampling THROUGH the same “tube” where they infused Dell’s medicine?:eek: Even if cleansed out with saline water, the port would not under these circumstances – or any for that matter – be sterile enough for valid blood sampling! What have they been thinking? Spare the poor little boy from another “needle”? Did they ever imagine how many other “needles” of all kinds this lead too!

      “SUE THEM!” isn’t that what you say in the US?:cool: 😀

      Anyway, if this clears up a lot of misunderstanding, and the right diagnose and medication now can be decided, the situation has become so much brighter for you, and that is the most important thing in itself!

      I know you’ll keep us posted, Lori, all of us here feel like Dell is truely one of us”

      GOOD LUCK!

    • Anonymous
      March 27, 2008 at 8:43 pm


      Thanks for the post. Everyone who has a port has the blood drawn from it for their bloodwork. Cidpkid, Emily’s mom, I imagine Kevie, they all have their children’s blood drawn that way. It’s very common.

      I don’t know if we just need to take more for discard.

      Love, Lori

    • Anonymous
      March 27, 2008 at 8:47 pm

      That is GREAT news, Lori!

    • Anonymous
      March 28, 2008 at 11:33 pm

      when my son had his port we had inaccurate results and found that we needed to draw more for discard before the draw because of the heparin and then the flush and after doing that (by drawing more) it worked out great. Hopefully for Dell’s sake that would work for him so he doesn’t have to get stuck more because that is what the port is for meds and draws. Glad that he is doing well though.
      Prayers are with you both.

    • Anonymous
      March 30, 2008 at 1:15 pm

      [QUOTE=jodylynn67].. and found that we needed to draw more for discard before the draw because of the heparin and then the flush and after doing that (by drawing more) it worked out great. [/QUOTE]

      [B]Lori[/B], I bet that this is not what has been done in Dell’s case. I asked my daughter yesterday and she said in all her years as a doctor she’s never heard of any reason why ports should not be used for blood draws. At Denver General Health and the University Hospital where she works they are using ports all the time.

      I’m glad the numbers look okay again. Take care.