Monday's are only for the brave.

Fun things today here in the Holleman house.  Earlier today I received not one but two large envelopes from the NIH.  Specifically the NIAID. National Institute of Allergy and Infectious Diseases.  This is the branch of the NIH that handles immune deficiency and they control the study that will look at Macey's gut.  The original protocol that Macey was referred to had an exclusion criteria mentioning steroids used in the last 4 weeks.  Macey has been on Entocort, a steroid made specifically for large intestine disease, for almost 18 months now.  We truly believe it is what has kept Macey's weight from dropping below 100 lbs and keeping her from needing a feeding tube.  It is made to be a time released steroid that dissolves at the beginning of the large intestine and therefore isn't active when it passes through the small intestine and absorbed into the system.  This would cause all the horrid side effects that systemic corticosteroids are known for (acne, roid rage, drop in white cell count, swelling). The GI doctor at the NIH believed it was too risky to take Macey off this steroid so that she could qualify for the study but instead found another study that did not have such a criteria and presented her for that one.

The study she will be participating in has the gut testing still done but also focuses alittle more on the immunology side and perhaps the natural course or progression of CVID.  There are possibly some other tests they will want to do to look at her system and we will discuss those with the study nurse (who is different than the study nurse we've been talking to since March) when Macey is admitted.  This study could possibly include lymph node biopsies and liver biopsies.  Plus pulmonary function tests and some CT's.  Macey's not had the biopsies before but the other tests are very familiar to her.  Plus if it gives them any insight into how her immune deficiency is going then we've come out ahead.

The study description can be found here.

Macey and I went after school today to buy stickers to decorate her transport chair.  Stay tuned soon for before and after shots.

After having an energetic Saturday Macey paid for it that night and all day Sunday by feeling all cramped up in her stomach and keeping to the bed.  She was best friends with her heating pad again and tonight says things have eased off.  She tries so hard to be helpful and participate in family things but does so tend to pay for it later.  

We hope to have the final culture report back tomorrow from the first nasal swab.  The preliminary report did show moderate growth of gram negative staph but until there is a final report and sensitivity we will not know if it is MRSA or Staph Epi.  Egleston seems to think that Staph Epi is ok and we should repeat the culture to prove she is clear of the MRSA but I haven't talked to the study nurse at NIH to find out if they have the same policy.  If staph is staph to them then Macey will be in contact isolation the week she is there.  So really no matter what it is I guess it's up to them.

The Starlight Foundation has received all of Macey's paperwork from her Immunologist at Egleston and has been approved to participate.  This is a wonderful group that works to allow seriously ill children a chance to have fun outings and enjoy family time.  They have emailed me the final paperwork asking about family members and having us sign that we understand their policies on tickets and participation.  I, of course, promptly filled it all out and faxed it back in.  This should pick Macey's spirits up.