Grace and Glory

Musings from the Threshold

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FB Post – Feb.18, 2018 #1

Good morning! I’m going to separate posts a bit by topic this morning, just for clarity /simplicity.
KATIE MEDICAL UPDATE –
Katie and I both slept pretty well, all things considered. She’s feeling a bit better today, and is enjoying watching the “old” Beauty & the Beast movie.
Goals to be met to be cleared to go home –
1)24 hours fever free
She has been fever-free since about 6am, so if it doesn’t come back, we can count our 24 hours from there.
2) Clear blood cultures at 48 hours (these were drawn in Hutch early yesterday afternoon)
3) Otherwise looking/feeling good, meeting with Dr Max’s approval when we see her tomorrow.

It is possible that her fever was/is part of her body’s response to the neupogen. If no other reason is found, and she is stable, I think we move forward with that assumption. And no, I don’t know quite what that looks like. But our King? He does!

FB Post – February 17, 2018

This has not been the day we expected when we woke this morning. We were concerned about some symptoms Katie was having (including a fever) and got on the phone with the folks at Children’s Mercy. They had us go to the ER for some evaluative tests, none of which explained the fever. Since Katie is a high risk patient, an unexplained fever is quite concerning, and the team at Children’s wants to be sure they are not missing anything.
So, after an afternoon/evening at Hutch Hospital, where we received excellent care (yes. Stop and reread that one), Katie and I are on our way via ambulance to Kansas City. The policy is to admit for at least 48 hours in a situation like this. Please pray for clarity, wisdom, healing…
Jonathan was a trooper to pack for two girls on the fly, and would like to come join us, if he can get the younger darlings taken care of. Another thing we’d appreciate prayer for.
And food. Special diets don’t mesh really well with unexpected multiple-day absences from home. Katie & I are both hungry and a bit worried about food.
I am going to have a moment of humbling honesty here. Our budget has been tight with all the needed diet changes. And a few weeks ago, J’s work announced a temporary cut in hours. Our bank balance this morning did not mesh well with this trip.
We are children of the Great Provider. We rest in that, and we ask you to pray with us for that provision.

 

Not included in this copied post – the 103 comments of love and support.

Katie Update – Starting a treatment plan

I posted this picture to FB last Saturday evening (2/10/18), with the following –
A precious friend sent me this balm today.
I needed the reminder. Yesterday evening, we found out that insurance had denied payment for the very pricey drug we plan to try for bringing up Katie’s neutrophil count.
Hard for this mamaheart to be so close to actually moving forward with something and then hit a roadblock. It’s not final – insurance companies are well-known for the process this sets in motion. But it was discouraging news for the moment.
I am so thankful for the Firm Foundation, the Sovereign King of Creation. May He consume my dross and refine my gold!

It was not lost to me on Friday evening that the call coming after Dr. Max’s office was closed… this was no accident.  I think the Lord wanted me to sit with Him over the weekend, being reminded of His power, sovereignty, and goodness. He is so sweet to me. It was such a wonderful reminder of His control over every piece of this. When our hearts truly want His will, we can rest in His hands, knowing that whether He chooses what we would choose, or something completely different, He is weaving our story for His glory, and for good.

Monday and Tuesday brought multiple phone calls with the HemOc clinic, and two more denials for the Rx, followed by an approval call. Today, the medicine went out via overnight FedEx, and we have a training session to learn how to do the shots at home scheduled for Friday afternoon. If it arrives early enough tomorrow, we might move that up a bit.

The plan is to check labs after a week to see how the Rx is working.  May the Lord continue to make the way clear, and may we continue to follow our Shepherd step by step!

Soli deo gloria!

Katie Update – Our January KC trip

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 – Plans for KC

Things are shaping up for our next trip to Children’s Mercy in KC. We are scheduled to see Dr. Max (aka Dr. Hetherington) on Monday morning, and plan to drive up Sunday, most likely staying overnight at the Ronald McDonald House.
In addition to seeing Dr. Max and getting look at how Katie’s labs are looking, we will be doing whatever is needed for the NIH (National Institutes of Health) to do extensive genetic testing not only Katie, but on Jonathan & I, as well as several siblings. This type of genetic disorder is rare enough that it is not completely altruistic of the NIH to want to take a closer look at our family, and we are fine with that. After spending months trying to figure out why Katie has been so sick, we would be happy to help make the picture more clear more quickly for other families.
In the meantime, we feel encouraged by how Kate seems to be feeling. She remains low on energy and quite pale, but has more spunk than she did a couple months ago, and seems to be able to think more clearly. We have not gotten any bloodwork done since our Children’s visit in December, and we are interested to see if there is any improvement in her labs.
Do we have any theories on why she might she be improving? Well, yes. Thanks for asking! It has seemed likely that there is an autoimmune component to what has been going on with Kate, and we have therefore made significant changes to our diet in hopes of relieving as much stress on her body as possible. We are hopeful that these efforts are truly bearing fruit, and that perhaps we are figuring out some key pieces of what will be helpful as we move forward.
Thank you so much for praying for Katie, for our family, and for the doctors looking at our medical mystery. Those who know us know that we are not a run-to-the-doctor-and-do-whatever-she-says-at-the-drop-of-a-sneeze family. We look at our health from a whole-person perspective, and seek to support our God-created systems naturally as best we know how. At the same time, we have always been of the opinion that there is a proper role for the medical industry, and have availed ourselves of such throughout the years as we have believed was needed. We believe we are where we are supposed to be in seeking care for our precious Kate at this time. We believe that the Lord has guided each step of the way, and will continue to lead. We value input and ideas, and the Lord has used many of you to help refine our thinking, give suggestions, etc. We are so very thankful!

FB Update – Jan 12

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 Visit to Children’s Mercy

Thank you for praying for Katie, and for us as we seek answers for her.

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.

We were astounded by Children’s Mercy. The entire atmosphere was different than that at any specialist’s office we have been to. It was a lovely, encouraging difference.
 
The Hematology/Oncology (HemOc) clinic is its own little world at Children’s, including having its own air filters! Dr. Hetherington (aka Dr. Max) spent about two hours sitting down with us and seeking to understand Katie’s story. It was extraordinary. We learned a great deal from her, just in talking over different possibilities. She seemed to be forming a multi-tiered list of culprits to investigate.
Katie broke her vials-drawn record on Friday at 13 vials. Some of those labs have come back, and others haven’t yet. We also went for an abdominal ultrasound, which confirmed that her spleen is enlarged (something that fits with various parts of her puzzle).

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.

          

As of today, Dr. Max’s plan is to present Katie’s case to the HemConference next month. She is wanting to get input and ideas from other hematologists. Labs that have come in so far from Friday have still not given any easy answers. So, more patience is in order, but we are encouraged to be working with Dr. Max, and trusting in our Sovereign God’s wisdom and goodness.
Please continue to pray with and for us. Thank you!

J&L

FB Posts – Dec 19, 2017

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!