Update on Ace

I have not updated on Ace in a while.  He has been doing really well.  He had a rough patch a few weeks ago, but is doing good again.  We had been so excited by Ace's progress.  The rash had pretty much completely gone away and our main concern was keeping him healthy due to his counts being low.  Unfortunately, on the 26th of last month he came down with a virus.  He tested positive for parainfluenza which is the viral strain that is responsible for RSV and pneumonia.  He had a chest x-ray and that was clear, so we treated with breathing treatments, tylenol and bendadryl in order to try and dry up his congestion.  We were not sure if it was the virus, or what triggered it, but Ace's rash popped back up in the diaper area as well.  We were bummed.  Ace saw Dr. McClain on May 6th and we were really disappointed after his appointment.  Dr. McClain expressed concern that the disease might be outsmarting the medicine.  He upped the chemo dosage and told us that if the rash was not better in 2 weeks, Ace would have to have a port put in and they would begin the vinblastine chemo protocol to treat him.  It was a crummy day.  We knew going to the appointment that the rash was back, but it is terribly disappointing to hear your child's doctor say that he thinks the medicine might not be working.  Of course we know there are other treatment options, but we really want the LCH to respond at the lowest level of medication possible.  I just have to say again how thankful we are for Dr. McClain.  He mentioned that he would be traveling the next 2 weeks quite a bit at our appointment on the 6th.  He went to Greece and to Washington DC to speak about Histiocytosis diseases.  I was surprised last week when he called me to check on Ace.  I was able to give him a good report.  The rash seemed to begin responding to the stronger treatment.  Dr. McClain was thrilled.  You can tell that he genuinely loves what he does and cares deeply for his patients. Dr. McClain said  "Ace is such a happy little boy and a joy to treat.  I was terribly disappointed when the rash recurred."  He said that the skin form of LCH is the most frustrating form to treat because all patients react so differently to treatment.  Fast forward to today- the rash is pretty much cleared up again.  Ace had a really good appointment.  Dr. McClain is thrilled with the results.  Our only major concern is that his counts are pretty low(lower than they have ever been which is to be expected since the chemo dosage he is on is higher than it has ever been).  So, we have to be extremely careful in an effort to keep him from getting sick.  Ace will have to have labs next week and likely the next in order to keep an eye on all of his counts.  He goes back to see Dr. McClain on June 10th.  We are thrilled about today's appointment.  He had been having such good appointments until the one on May 6th.  Toby had said after one of our really good checkups in April, "man it feels so good to come and get such good news, it will be really crummy if we come and he has a bad appointment."  He was right, the appointment on the 6th felt like a punch in the gut.  Today was so much better.  We wish that his counts were not low right now, but we are so thankful that the disease does still seem to be responding to the medicine.  Thank you all for praying for Ace and our family.  We are so thankful to have such a strong support system.

Headed to Houston for a good checkup

Ace is growing!  He weighs 21 lbs 

Thanks for checking in on us!