We are just a few days from Henley officially turning 4 months old. She fills our days with lots of smiles and is just on the cusp of full out laughter. For being such a tiny person, not even 10 lbs yet, she has the biggest personality we've ever seen in such a little package.
Last week her red blood cells continued to trend down. Unlike other checks that seem to go up and down, we have now had four tests that have all showed numbers going down. All that said, she is still in a safe zone and doesn't need another transfusion as of yet.
Her neutrophils have been nicely elevated with the help of two shots of neupogen each week. My practice poking horses and cows has served me well, so it's really a piece of cake to draw up a little medicine and give Henley a quick poke. She's such a tough girl that she hasn't even cried the last two times! Neupogen has been a huge blessing to us, elevating her neutrophils to a safe level so she is not quite as susceptible to infections. All that said, God really watched out for her prior to diagnosis because I was trotting around outside, through the barn, handling horses and letting them nuzzle her and toting her around the countryside without a single thought. All things that exposed her to bacteria and germs that could have been deadly with a neutrophil count of zero!
Tomorrow the community of New England is hosting a benefit for Henley. Due to weather concerns the meal and silent auction have been moved indoors. The outpouring of support that we have experienced is overwhelming. Henley is truly loved by so many people - young and old, near and far. We are forever blessed and can't thank you all enough. We have been especially touched by the young people of New England, elementary school kids hosting a bake sale for Henley and a story from a father who witnessed his young son praying before bed. When the Dad asked him if he was saying his bedtime prayers, the son answered that he was saying his prayers for Henley Johnson.
Saturday, September 23, 2017
Tuesday, September 12, 2017
Bone Marrow Transplant
I wanted to take a few minutes to write this morning and share some information/clarification on bone marrow transplant and blood donation/transfusion for Henley.
Thank you to everyone who has offered to donate blood for Henley's transfusions. Unfortunately, the way it has been explained to us, the doctors aren't able to accept blood donated specifically for Henley. There are two reasons for this, first we don't know when Henley will need her next transfusion. We continue to check her levels twice weekly and this will be decreased if she continues to remain somewhat stable. There have been times where we feel certain we'll be heading to get another transfusion by next week, but then with the next labs she bumped up again. This is very typical for bone marrow failure. Think of something that only works part time, some days it's good about doing it's job and other days it's not. Sometimes her red cells are mostly good ones and other times they are smaller and more fragile and don't last as long. The second reason is because it takes several days to fully screen and process blood for a donation (at least as it has been explained to me). Even though it's someone we know, or even Kyle or I - there is a preparation process that needs to occur and when it does come time for a transfusion we won't be able to wait for that process to take place.
Next, the bone marrow transplant. Henley will need a bone marrow transplant in the future, but as of today, we don't know exactly when. We do have a consult scheduled with the bone marrow transplant specialist in two weeks and will know more about that process then. At this point we have been told that when Henley consistently has two lines of blood failing, we will move forward with transplant.
So what does that mean you might ask? Our blood has three lines: red cells, white cells and platelets. Henley's platelets have been perfectly normal this entire time, but her white cells, specifically neutrophils have been non-existent until we started using medication and her red cells have also been failing (they have been assisted with transfusion). So at this point it does seem likely that we will be heading towards transplant sooner than later.
Who will be the match?? The doctors told us we will first test the twins, that will be done this week with a simple swab test. It would be great if one of them was a match for her. If they are not a match we will explore finding her a match through a donor search or possibly a cord blood bank.
We are asking people to participate in being tested at the benefit that will be taking place in New England. It's a simple swab of the inside of you cheek and it is then sent to www.bethematch.com for testing. Our journey with Henley has really opened our eyes to how many people out there are waiting for a match and maybe YOU will be that person to save a life!
We want Henley's experience to help others because so many people are helping her. So if you have thought, how can I help Henley, please donate blood and please be tested to BE THE MATCH! Even if that donation isn't specifically used for Henley, you know it will be used to help someone in need!
Thank you to everyone who has offered to donate blood for Henley's transfusions. Unfortunately, the way it has been explained to us, the doctors aren't able to accept blood donated specifically for Henley. There are two reasons for this, first we don't know when Henley will need her next transfusion. We continue to check her levels twice weekly and this will be decreased if she continues to remain somewhat stable. There have been times where we feel certain we'll be heading to get another transfusion by next week, but then with the next labs she bumped up again. This is very typical for bone marrow failure. Think of something that only works part time, some days it's good about doing it's job and other days it's not. Sometimes her red cells are mostly good ones and other times they are smaller and more fragile and don't last as long. The second reason is because it takes several days to fully screen and process blood for a donation (at least as it has been explained to me). Even though it's someone we know, or even Kyle or I - there is a preparation process that needs to occur and when it does come time for a transfusion we won't be able to wait for that process to take place.
Next, the bone marrow transplant. Henley will need a bone marrow transplant in the future, but as of today, we don't know exactly when. We do have a consult scheduled with the bone marrow transplant specialist in two weeks and will know more about that process then. At this point we have been told that when Henley consistently has two lines of blood failing, we will move forward with transplant.
So what does that mean you might ask? Our blood has three lines: red cells, white cells and platelets. Henley's platelets have been perfectly normal this entire time, but her white cells, specifically neutrophils have been non-existent until we started using medication and her red cells have also been failing (they have been assisted with transfusion). So at this point it does seem likely that we will be heading towards transplant sooner than later.
Who will be the match?? The doctors told us we will first test the twins, that will be done this week with a simple swab test. It would be great if one of them was a match for her. If they are not a match we will explore finding her a match through a donor search or possibly a cord blood bank.
We are asking people to participate in being tested at the benefit that will be taking place in New England. It's a simple swab of the inside of you cheek and it is then sent to www.bethematch.com for testing. Our journey with Henley has really opened our eyes to how many people out there are waiting for a match and maybe YOU will be that person to save a life!
We want Henley's experience to help others because so many people are helping her. So if you have thought, how can I help Henley, please donate blood and please be tested to BE THE MATCH! Even if that donation isn't specifically used for Henley, you know it will be used to help someone in need!
Monday, September 11, 2017
STRONG!
Last week we all traveled to the University of Minnesota to meet with a genetics counselor and check in with Henley's doctor. The twins were also tested during this visit to see if they are carriers or possibly also have SDS. There is a large spectrum when looking at patients that have SDS and although we don't think they do, we want to make sure.
Henley seems to be growing and developing normally in terms of strength and cognitive abilities. Next week she will be evaluated during an in home visit with some specialists. She isn't even four months old yet and she's strong as can be, rolling over and pushing herself up!
Some very generous women in our small community are planning a benefit for Henley. A flyer below gives some information about the event. They are also selling HEALING HENLEY bracelets.
For anyone wanting to purchase a Healing Henley wristband that is not local to the New England area...Cost is $5.00 per wristband. Checks can be made out to Kyle, Jess, or Henley Johnson. All profits will be given directly to the family. I will mail wristbands to the return address on the envelope unless otherwise noted. Please send payment to:
Leah Rustan
1014 4th Ave W
Dickinson, ND 58601
Thanks so much for your support! Feel free to message me with any questions on getting your wristband 
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