Monday, March 30, 2015


POST TRANSPLANT DAY 67 (today) IS A BIG DAY! WILLIAM HAS PLATELET ENGRAFTMENT! This is the last step in stem cell transplants-a HUGE milestone. 👍💙

In short, he hasn't needed a blood transfusion in over a month, and now he is making his own platelets! Platelets are the last to take hold. Now that he hasn't needed platelets in over a week, William is officially platelet engrafted! A BIG BIG DAY! His levels will fluctuate a bit before the numbers go up exponentially, but they are no longer going down, which a HUGE! HE'S MAKING HIS OWN PLATELETS! Yay!!!!

39 more days until post transplant day 100 (the earliest we can go home)! We still have a long way to go, but this is the first time I've let myself think past tomorrow in a long, long time. 💙😄

Thank you for your support, we wouldn't had made it this far without it!

Love, The Branches

Sunday, March 22, 2015

Graft-Versus-Host Disease

William is at risk for developing graft-versus-host-disease at any point 100 days post transplant.  He is showing no signs of such, up to this point, but they will keep us here for that duration regardless.

More information on graft-versus-host disease:

We are currently post transplant day 66.

As we delicately reduce William's medications, he is becoming more alert and attentive to his surroundings.  We are uncertain what he will and will not be able to do at this point, but we are optimistic that he will be able to communicate through assistive technology, the type to be determined once we establish William's baseline.

William's doctors stated that we won't be able to see William's true potential (baseline) until 1 year post transplant.

We have follow up appointments 3 days this week.  We were currently on a 2 day a week schedule, but his doctors want to more closely monitor his platelet levels to see if the level will stay consistent without the need for a transfusion.  In the recent past, he was transfused regardless so he would for sure be OK over the weekend.

My family and friends are working incredibly diligently on William's fundraiser in Burlington, Iowa, on April, 11, 2015.  There are a lot of items up for grab and fun events, check it out on the facebook page at:

Much love,
The Branches

Friday, March 6, 2015

The day has come....dismissal!!!!

William is getting discharged today! We are BEYOND excited! He hasn't left his hospital room since January 2. Robert and I are celebrating by getting a bite to eat before our little boy joins us at the Ronald McDonald House. Papa Ron and Gogo Marcia will be here a few more days and my brother Adam will be here this weekend.

Robert and I are familiar with g-tube care and feedings. We also received training yesterday on central line usage and care; William will have his g-tube indefinitely, and he will keep his central lines until we are dismissed back home. As outpatient, William will receive transfusions through his central lines and they can also draw blood through the lines.

Thank you for all of your thoughts and prayers for our little miracle. I will post a picture or two of the "parade" the nurses and doctors are going to have for William when we are leaving. 😊

Wednesday, March 4, 2015

ways to help

As many of you know, our son was diagnosed with a rare genetic (no family history) neurological disorder 3 months ago. About one month ago, he received an umbilical cord blood (stem cell) transplant from a volunteer donor to help stop the progression of the disease.

One year from the day of the transplant (January 22, 2016), I can ask for the mommy's information that donated her cord blood that saved my son's life. There is a chance she wanted to be left anonymous, but I sure hope not. I want her to see William and how her selfless act saved my son's life.

Did you know cord blood donation is absolutely free?

I didn't know that, I didn't know a lot of things about blood donations until my son was diagnosed.

There was a little 2 year old boy on William's hospital floor that needed a bone marrow transplant. He did as many rounds of chemo his body could handle while his family anxiously waited for a match. One was never found. That little sweet smart boy was sent home to die. Unfathomable.

William has received over 20 (yes 20) blood and platelet transfusions since we have had the transplant and he will continue to need them until his body is through healing. All from volunteer donors and without them, my son could have never received the transplant.

Many of you have sent wonderful gifts (Its honestly like Christmas receiving mail 😊) and many of you have donated your hard earned money to help us pay for William's medical expenses. And for that we are undeniably grateful.

But there's more you can do that doesn't cost A THING.

Have you ever considered donating blood? Did you know one donation can save up to 3 lives? I urge you to please educate yourself on the process and go to a blood drive and just ask questions. They screen you with several questions to see if you are even eligible.

Robert and myself donate regularly. We are not special, we are no different than any other folks wanting to help. But every 56 days we donate.

I'd never considered donating bone marrow. After meeting that little 2 year old boy I mentioned above, I am now on the bone marrow registry. I don't know if I will be able to save his life or anyone else's as bone marrow matches are much more complex than blood, but I'm sure going to try my best to save SOMEONE.

Please consider hosting a blood drive at your work or school. That's the only thing I can do at this point...I feel absolutely helpless when it comes only son's disease.

Cord blood donation is free, more info:

Host a blood drive or to donate blood:

Info on donating bone marrow:

Tuesday, March 3, 2015

almost ready for dismissal! for real this time

With Papa Ron Glasgow and Gogo Marcia Swan Glasgow spending time in William's hospital room, I have time to spend in the Ronald McDonald House apartment doing, well, nothing. It's quite a pleasant break although relaxing is a learned and difficult task. Other type-A's can relate. 😊 We have a TV in the apartment with the BIG10 network, that's a good start.

William's little body continues to heal well. He's up to almost 19 pounds; he was at 14-15 pounds for about 5 months. I'm still getting used to seeing a little boy instead of a newborn. He turns 9 months old on Sunday! He will be getting one set of central lines removed tomorrow, still keeping one set in. He will continue to need blood and platelet transfusions as needed along with daily blood draws, so having a central line in will eliminate the need for IVs (no needles). When we leave for home in a few months, he will just have his g-tube. His feeds will be strictly enforced. Children with Krabbe Disease need to stay small, usually below the 10th %ile for weight. This evil disease has taken his ability to move and he isn't burning calories, plus it's easier on his body and joints to be smaller. Robert and I are not small people (Robert is 6'4"!), so it will be tough to keep him that small!

The doctors agreed to finally take him off of Valium. He's been on it for about 7 consecutive weeks (started on it during the strongest stretch of chemo and transplant until present). It will take the entire month of March for him to get completely off of it; weaning from benzodiazepines apparently is a delicate process, especially with a baby that has been on it for so long. Scary stuff. His care team does this often and are confident he will have NO withdrawal symptoms. I can't wait to see his eyes shine again. We will be discharged by the end of the week.

I guess those are the big changes to share for now. Now, back to doing that "relaxing" stuff people say I should try, although I think its highly overrated.