Pre-Op

Henley was awake and visiting with everyone at the clinic most of the day. When we left, she fell asleep and has gifted me time to eat, check in to a different hotel, shower and now post this update! Wow - I guess that's what happens when you just have one little cat nap during the day.

Less than impressed with the hotel last night. So I checked out early and changed today. After 12 hours of travel yesterday I didn't have the energy to change rooms last night- bed was clean, so we made use of that and made the change this am.

Instead of "doing stuff" during what is Henley's usual morning nap, I decided to join her and got in 2 extra hours of rest. Which was awesome. I even got to load up the luggage cart before she woke up! It's amazing and kinda stupid how much STUFF you need when you travel with an infant.

If You See Someone Struggling - Help
Took the loaded cart and Henley (in her Tula) down to the lobby to check out and that's where the day started to feel lonely. As the elevator doors opened, I tried to navigate the cart out the doors and sure enough a couple things fell off the cart. I tried to catch the door, but wasn't fast enough. Hit the button on the elevator, but again wasn't fast enough and instead I watched the numbers climb as my stuff rode up to the 11th floor. When the elevator came back down my stuff was still in there. Upside down and laying on the floor. A guy looked at me, my loaded cart, my strapped on baby - smiled and walked out of the elevator. I went in and started trying to collect things and the other stranger kindly stepped in and asked if he could help me at all. He stacked the stuff back on the cart and helped me roll it towards the door.

Why a hotel? Mostly because I really needed quiet time with Henley. Time to just fully focus on her and not feel the need to interact with others. Time to rest.

We ice skated the car to the hospital for appointments today and arrived a couple hours early. Henley and I wrote prayers on paper notes and hung them in the chapel tree for one friend who is on hospice waiting for God to send his final call and another friend who is desperately looking for an HLA match. We watched the fake (electronic) fish aquarium, which Henley LOVED and then we met Elaine.

Elaine has been volunteering at the hospital since 2011. She is elderly and disabled and rides a metro transit vehicle from her door step to the hospital once a week to teach people how to knit. So, she did. She got me all set up with yarn and needles and taught me how to be a "picker." Several times during our visit I heard myself exclaim like a child "Look at me! I'm doing it!" And she would say, "Yes, I noticed!"

Our visit with the surgeon was less than impressive. I'm sure he's skilled with the blade - but he REALLY lacks people skills. We are comforted to know that we will be admitted under our hematologist's care at the hospital. We are very comfortable with her and trust she will guide us over the next few days as we transition to this new normal.

Several has asked if they can visit while we are in the hospital. My thought as of right now is to wait until we get into a room after surgery and they give you all an update.

I have a terrific friend who will sit with me at the hospital tomorrow while Henley is in surgery. She has a cool and clam personality like Kyle since he can't physically be there.

We've been told surgery will start at 7:30am and is expected to take at least an hour, plus add on more time for the bone marrow biopsy. We greatly appreciate all who will be participating in the prayer chain our church will activate when surgery begins. I will post an update as soon as I can.

Surgery Scheduled for December 29

I prepared a pretty lengthy post to go on the blog about our last 72 hours of travel (1404 miles total) and doctor visits but have decided not to post it at the moment. Maybe it was just therapeutic for me to write it and that all it was meant to be. 

Here’s the black and white of it, next week Henley will have a surgery to place a gtube that will assist in maximizing her nutrition. We have resisted this for sometime but one thing we have learned to do on this journey is make the best decisions we can for Henley on a day to day basis. Her condition is changing constantly and what’s right for her today is different than what was right for her a month ago. To avoid being under anesthesia twice in one week we canceled her bone marrow biopsy that was scheduled for today and it will be done at the same time as the tube.

There are risks with this surgery due to her decreased blood counts on all three lines. Our church will activate a prayer chain when surgery begins Friday morning, the 29th, at 7:30am. We’d greatly appreciate your thoughts and prayers during that time as well. She will stay in the hospital for several days.

We are wishing you all a very Merry Christmas and are so grateful for your prayers and love as we have been going through this challenging time. 

Preparing for our December Trip

We've been trying to find the right dosing for Henley and her GCSF shots since we were in Minneapolis a month ago. This has meant lab work three times a week to check counts. It's been exhausting. Sadly, we haven't perfected it yet. Today's latest counts are still low. I give her shots every other day now at home and we are still dipping into severely neutropenic ranges. This makes her extremely vulnerable to infection.

In addition to issues with her white cells (specifically neutrophils), her third line of blood is failing. I think I have explained before, but for those unfamiliar I will give you a little overview. Our bodies have three lines of blood: white cells, red cells and platelets. All are made by our bone marrow. Transplant is typically recommended when two lines of blood are failing. For Henley this has been the case since she was diagnosed with SDS. She has required blood transfusions for her red cells and shots of GCSF for her white cells. Consistently now for over a month her platelets have been below normal range. Normal is 150 to 400 and today Henley's platelets are 96. Platelets can also be transfused, but they will wait until her numbers are lower before doing that. On a bright note her body has been maintaining her red cells for nearly 10 weeks!

These changes in her blood encourage us to do another bone marrow biopsy as soon as possible. That will take place on Wednesday, December 20th at the University of MN Masonic Children's Hospital in Minneapolis.

Schwachman Diamond Syndrome is a bone marrow failure syndrome, meaning her marrow is unable to do the job it was built to do. You can't group all SDS patients into the same exact group, as the syndrome has a large spectrum. We knew Henley's marrow was failing from the beginning, we just didn't really expect her platelets to begin failing as well.

Henley and Jess will head out Sunday. We have appointments in Sioux Falls, SD to see a new GI, then onto Minneapolis for appointments Tuesday and Wednesday.

We thank God that Henley has not shown signs of infection during this last month of trying to perfect medication. We ask that He will continue to protect her and that we will have safe traveling weather for the upcoming week.