I have to apologize for not getting an update on here sooner…it’s probably for your own good. Taylor has been doing great, but my attitude has not been, so I just couldn’t bring myself to posting updates half-heartedly until I figured out what my funk was about…and I did…I’ll get into that later. So here are the updates, sorry this is so long...
1. Lab work - We were down for a long visit with Dr. Curran and Dr. Pachman on March 31st…she was put thru the whole gamut of blood tests and lab work. The great part about this visit is that there was absolutely no sign left of the staph infection in her body! Her white blood cell counts were the lowest as they’ve ever been, and what was even more encouraging is that her CK (Creatine Kinase) was finally in the lower end of its range. The CK is an enzyme that is first elevated after a heart attack and is also used to detect muscle damage and trauma. The normal range for Taylor should be around 49-149…when Taylor was admitted to Children’s in December her level was just over 4,200; that’s not a typo… her muscles were literally reflecting the trauma experienced of a compound fracture or severe car accident. All from her immune system attacking her blood vessels in her muscle and skin. When Dr. Curran told me it was 57, with a huge smile on her face, it took every part of me not to break down crying with joy. There is a big difference between believing that everything will be ok, and knowing that everything will be ok. Hearing the 57 was almost surreal! Again, the disclaimer is that blood levels are just the tip of the iceberg, but to me it reflects the momentum and direction Taylor is headed.
2. Muscle and Skin… The therapists did a complete screening using a range of motion and strength test that was written specifically for patients like Taylor so there is a gauge for improvements (because you can’t just rely on lab work to determine activity levels of the disease) Taylor scored a 32 out of a possible 52. There were things that she did in this test, that I didn’t even realize she could… it was great. But the biggest concern is that when she is lying down, she is not able to lift her head up on her own…and we’ve known this. Her therapist in WI works on it every visit. They say it’s going to be the last area to gain strength. After seeing this, the Rheumatologists agreed that “we’re just not there yet.” So after being on a complete high about the lab work, the rest of the visit was more hard to swallow. They are concerned yet about the activity in her skin. She has “pitting” referring to the red indentions next to her eyelids, and blotchy skin rashes on her cheeks…leading them to believe that it’s not time yet to back off, but to be more aggressive. That PICC line they had us administer anti-biotic for the staph infection is now being used to give her the steroid intravenously, what had been planned 3 times a week, and we are now giving her methotrexate shot thru that as well. (they doubled the dose of the shot, wasn’t aggressive enough).
3. Update since then… She had two stitches about a week ago that were getting infected, two of the “dissolvable” stitches didn’t dissolve, so after a visit to Chicago, she was back on antibiotic and backed off the IV steroid plan, if she is being challenged by the infection, they don’t want to challenge her further by suppressing her immune system aggressively. So she’s getting 2 rounds a week now, we go back on the 21st, if they are seeing enough improvement still, they’ll keep her on 2…fingers crossed. Incisions look good now, almost healed.
4. The stress released… At that visit on the 31st, they brought up putting a medi-port in… if she were going to be getting medicine thru an IV that often for a long period, the PICC would not suffice…as it is, they only like to keep them in for a couple of months. The port is implanted under the skin, just below the clavicle, for direct access and very little maintenance required, this is how chemo patients receive treatment… please don’t get me wrong, if it were necessary, of course I wouldn’t buck it…but when she’s been progressing so well, to hear they want to schedule putting one in, just floors your heart into your stomach. I called the nurse after a week to ask if this could be averted, and she said it was the best thing for her, but she would talk to the Dr. She called me a few hours later and I could just hear the excitement in her voice; Dr.’s think with her pace of progress, it may not be necessary…that’s all I needed to hear…I realized what the grey cloud has been over me and Shawn…maybe it was having direct access to my daughter’s heart that scared us, maybe it was the scar we would see on her chest the rest of her life reminding us of this awful ordeal for her; I think it was the thought of how serious a situation she is still in, that reminded us we weren’t in the clear yet. Hearing that “may not be necessary” ranks right up there with the “57” on speechless moments.
5. Website…you’ll notice the link for the “First Giving” donations page… I’m going to be a runner, and I say that in “future” tense because I have gotten seriously out of shape in the past few months…but there is nothing more motivating that watching a loved one struggle to walk or function. You realize how selfish you’ve become in taking your health for granted…Taylor has fought from using her upper-body to have to pull herself up the stairs, just one at a time, to now doing an entire flight of stairs one foot after the other…and getting to the top and just being SO happy that she can do it again…that is the definition of determination, and much more than any 6 year old should ever have to struggle thru… So I’ve signed up for the Chicago Marathon on October 10th, but because this isn’t an official fundraiser for the CUREJM foundation, we (my sister Lisa and I) are going to run the half marathon in September also, that one is a fundraiser for the organization. Volunteers run CureJM…since the disease is so rare, most of the funds for research come from private fundraising efforts. The video on this page gives you an idea of just how active and incredible these people are!! Any money at all, if only $5, is greatly appreciated and will go directly towards the CureJM initiatives for research… Thank you so, so much for your support!!!!
