My heart continues to break for my sweet Ashlyn. Late last week we got some more bad news about her most recent blood work, and it was not good. In fact those were the exaxt words that were used by the GI nurse when she called me on Thursday. I cannot say that I was surprised, in fact I think we all knew that this was going to be the case. We have not seen improvement on her pain, her nausea, or other symptoms, and with her levels running high both times before when she had this test, it would have been more shocking had her body accepted the medication as it should have.
Although we drastically reduced Ashlyn's dose of Mercaptopurine 6 weeks ago, her levels are still off the charts and we had to stop the medication asap so as not to increase her risk for permanet damage to her body. The good news is that at this point the mercaptopurine has seemed to not leave any permanent damage to her system, so that is a blessing. She will never be able to take this class of medication again; the 6MP class- this is a problem as this is a great maintenance medication.
These are what we are adding:
with just a phone call she went from 4 pills a day up to 12 a day with a weekly injection.
She is really throwing her doctor for a loop as she is not presenting in "textbook manner". This has always been something we have joked about, but it gets less "funny" each time her bloodwork comes back like this. Her ESR levels are elevated, which indicates more inflammation, so we are back to square one with her Crohns (in fact this could mean that the disease is rapidly progressing). Her vitamin D levels are extremely low, as well as her albumin levels (she is now considered to have hypoalbuminemia) this is a huge mystery and can be very dangerous. Basically her body is presenting itself as malnourished even though she has been taking in an excess of calories; we are running her tube feeds 23 hours a day and she is also drinking an additional 355 calories. This is going to be moitored weekly and if these levels don't rise, then who knows what will happen; it almost appears that food is harming her more than helping her- it's just weird. Most likely there is a lot of active disease in her small intestine, where the nutrients and vitamins are absorbed, and these are not being abosrbed, instead they are just passing through quickly and basically running through her without doing any work.
We started high doses of Entocort (an oral steroid medicationon) Friday. She will take a high dose of the Entocort for 4 months and then we'll see about tapering her down. This is not the usual way to take this medication, especially for a child, but we've got to get some of the inflammation down because this is what could be causing her to be malnourished.
We added more Vitamin D as well as some Folic Acid pills daily.
She will start weekly injections of Methotrexate tomorrow. It's another Immunosuppresant (just as the steroids are). The side effects are nasty, and wll more than likely make her sick. She will have to have a shot in her belly every week, but surprisingly she is not worried about the shot, and neither am I. She's a pro with needles and she is more worried about having to have bloodwork done every Tuesday as well for the next 4-6 weeks. She's had hundreds of blood draws during the last 18 months- sometimes twice a day. She is tired of having her arms poked.
I have all the needles and the medication and a handy at home Sharps container, but the doctors are worried about her having an allergic reaction r other "difficulties" with the Methotrexate (since she does have several allergies to medications as well as intolerances) so her first 3-4 injections will be done at the office so they can montior her closely.
This is a huge setback for her. She has reached her limits and just wants to feel good. I know it is hard for her to see the neighbor kids running around, having a great time while she is pretty much stuck in bed yet another Summer. This will be treatment #3 for her Crohns in a very short time period. I just pray this works for her.
I am usually pretty good about bouncing back from all the negatives and I work to find the ray of sunshine in the dark, but I am struggling terribly this time. I find myself crying several times a day and it physically hurts to breathe sometimes. I don't know if it's because I am just waiting for tomorrow and her first injection, or if it's the stress of knowing that the next few weeks of bloodwork are crutial, or if it's that everything that I have read and talked to the dr. about this disease and how horrible it can be seems to be coming true for her.
I just wish it were me, not her, having to endure this. But I can guarantee that she is handling this with more grace and strength than I could. She is truly remarkable in her courage and endurance. She is just one amazing sweet girl and I am blessed that I am able to take this journey with her, even if it is a long, uphill climb.
