For starters – the short version.
Jonathan & I, Kate, Grace, Stephen, and Andrew all had blood drawn to send to the National Institutes of Health for their study of this type of genetic blood disorder. That is not to say that they have identified the specific disorder, just the ballpark. We do not expect to get any information from the genetic end of things for at least 4-6 weeks.

Katie had various other labs drawn, some of which are expected to be instrumental in determining treatment that could be helpful. Her basic labs were pretty steady (anemic, severely neutropenic, high lymphocyte count), but Dr. Max agreed that she has better color and seems to be feeling better than in December. How we feel isn’t completely about our lab numbers.

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And now the story, for those of you who like the long version…
We drove up to Kansas City Sunday afternoon and arrived at the Ronald McDonald Longfellow House around 5.30. It was our first time there, and we were blown away. The kindness of the people, the beautiful homey-ness of the house, it was all just amazing. I think I spent most of the first half hour on the verge of (happy) tears, just overwhelmed at the kindness of other expressed in this very practical way. Here are some views of the RMH –

On Monday morning, after eating our breakfast, packing up, cleaning our room, and checking out, we headed over to our 10.00 appointment at the Hematology/Oncology Clinic at Children’s Mercy with Dr. Maxine Hetherington. We talked on the phone with one of the researchers from the NIH study on this area of genetic blood disorders, signed consent forms (which did not amount to signing our lives away as I had half expected), and all got our blood drawn for the NIH. Katie went first, as she had other labs to be drawn, and we wanted to be able to talk about her basics with Dr. Max before leaving. She didn’t break her vial record (13), but since each of the four vials drawn for the NIH was about 3 regular vials worth, she definitely broke her volume record. All the blood draws came off without a hitch except Jonathan’s – his veins were not very cooperative, but they did eventually get enough.

We did a detailed “pedigree” with Dr. Max, including what health issues various members of the family dealt with. This gives a better picture to her and to the folks at the NIH at how all the dots might connect. Many thanks to Cousin Wendy, who was a tremendous help ahead of time for this project.

Dr. Max ran some new labs this time, some of which she expects to give information that will help us determine a treatment route to get Katie’s neutrophil count and iron levels back up to where they should be (or, at least, to a more functional level – she is missing out on an awful lot at this point because her system is so fragile). When her basic labs came back, the numbers were pretty much what they have been – severe neutropenia, anemia, lymphocyte proliferation, etc. But Dr. Max agreed that she has better color and seems to feel better than she did in December when we were there (which was much better than she had been in September). We talked about some potential treatment options, which gives us the opportunity to do some research while Dr. Max waits for labs to come back. We appreciate you praying for wisdom and guidance in the treatment realm particularly.

We were at the clinic until about 1.15, and Dr. Max was with us for almost all of those 3+ hours. She is, besides being a fantastic medical detective, a really lovely person. I don’t believe she even registers on what I call “the god-complex scale.” She explains complex concepts in easy to grasp terms, yet does not talk down to you in the least. We really appreciate her.

While we were at Children’s Mercy on Monday morning, our friends the White family were giving tribute to and laying to rest their wife/mom/grandma, Sandra. My brother Eric and I went to school with the White “kids,” and while they have all remained dear to me, Eric and Donovan have actually stayed connected over the years. I was sad to be so close on the day of Sandra’s funeral and yet not be able to attend. But I was thankful that Eric was able to fly up to be there, and extra thankful that timing worked out for us to meet him at the airport and spend about an hour with him before he went for his patdown from the TSA.

We wrapped up our KC day with a visit to a local solar-power place, and a trip to Trader Joe’s, then headed for home. I really love both my driver and our travel crew!

Katie update –
Dr. Max called yesterday afternoon with a probable diagnosis. They think that Katie has ALPS (autoimmune lymphoproliferative syndrome), which is a genetic disorder.

She is hoping the NIH (National Institutes of Health) will do the genetic testing b/c they will be able to get more specific and detailed information that she will be able to.

What specific type of ALPS (or if it’s one of the disorders that is really close to it) changes what type of treatment we’re looking at.

I found this page very informative.

Our trip to Kansas City was productive and fun. Papa and Gramma Byrd came with us and took the younger kids to Crown Center and other adventuring while Jonathan, Katie, and I went to Children’s Mercy for her appointment.

 

After we left Children’s, we explored Union Station, drove around KC a bit, then enjoyed the Plaza light before heading home. It was neat to build some fun memories together in the midst of our concern about Kate.

J&L

8.20am – Brief Katie-update –

I got to talk yesterday with the nurse practitioner of the Dr. in KC who is working on Katie’s case. Every single person with whom I had contact at Children’s was so kind. The nurse practitioner called me back shortly after our conversation and said she hoped to call me today with an appointment time. So we are trusting the Lord to work out those details!
Kate’s hemoglobin has dropped from 10.9 on 11/27 to 9.4 on 12/14. It actually isn’t as low as I expected, but obviously is dropping quickly now that we are past 90 days from her iron infusion in Sept. We didn’t get a read on her neutrophils because of a kerfluffle with the specimen, but have no reason to expect they have come up, so are still be very careful about her exposure to germs.
Thank you for praying! We are resting in our Heavenly Father’s love and sovereignty, and praying fervently for wisdom and healing.

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9.03am – Praise the Lord! We have an appointment for Katie at Children’s Mercy at 10.30 Friday morning!