Face of hope

Face of hope
Courtesy: TIffany Kay Photography

Sunday, November 6, 2011

Infusion #1

We left for Duke on Sunday, October 30th -- we made it to Brian's sister and brother in law's house near Ft. Bragg later that evening. We packed the 4 older girls' Halloween costumes so they could go trick-or-treating with their Aunt, Uncle, and cousin on Monday. We ate dinner with everyone, got the girls settled, and then Brian and I got up around 4am Monday morning and continued on to Duke University with Meagan!

We arrived a bit before 8am.  We went to the Children's Hospital, and got Meagan checked in.  They called us back fairly quickly and got her initial stats done (height, weight, etc..).  We went for her pre-infusion bloodwork (since it's a study).  We were very lucky to get a great nurse who got Meagan's blood samples easily on the first stick.  This is amazing because Meagan is very tiny -- her build is extremely petite, including her vascular system and getting a good stick was always a huge challenge in the NICU. We were very happy the nurse got it on the first try - less trauma for Meagan.  Before we knew it, the morning was over, and so was all of Meagan's check in work. 

We have been extremely lucky to find other Hydrocephalus families online and since have been involved in an online message board for support.  One of the women on the board is Michelle - an amazing mom to Owen, an 5 year old boy who also has Hydrocephalus.  Michelle did an amazing thing with her experience - she got together with doctors, and wrote a website that was a little more parent friendly than all the 'scary' sites out there about Hydrocephalus.  It is an excellent resource, written with medical information, but from a mom's perspective. It is also her blog about her incredible son, Owen, and has been a huge help to Brian and myself through this whole process. 

I talked with her over email before our Duke trip (her site was the source where I first learned of the Duke Hydro study).. .and she informed me they would be at Duke that same Monday for an appointment for Owen.  We made plans to meet up.  So following Meagan's check in appointment, we walked over to the main hospital and waited in the main lobby. 

Michelle and Owen (and Michelle's mom and Jigsaw, Owen's service dog) arrived shortly thereafter.  It was so amazing to meet the woman in person who had helped us through so much of this tough pregnancy!  We chatted for a little bit, and of course, Meagan gave her some snuggles :)  We got some pictures together and then Owen had to be on his way to his appointment.  The internet is so wonderful for these kind of things -- it allowed us to meet this wonderful family!!

After we visited with Michelle and Owen, we decided to take a little tour of the Duke campus.  We walked around and saw the Chapel, and walked through some of the quads.  We also walked up to the athletic center -- of course, we love what Duke Medical is doing for Meagan and other Hydrocephalus kids -- and also for other kids with several different diseases and conditions.. however... Xavier Musketeers still rule in basketball ;) So of course, we had to walk up to the basketball arena where Brian gave a little Xavier "love" to Duke.. LOL

Brian giving a little "Xavier love" to the Duke basketball arena... GO X!

We made our way back to the car and went back to the hotel to eat dinner and get some rest.

The next morning, we woke up and got ready to head over to Duke for Meagan's infusion.  We took the hotel shuttle to the hospital since we knew we may be there all day.  We arrived, checked Meagan in, and got her stats again.  When the nurse measured Meagan's head, she came up with 49cm.  I gasped because that was a cm larger than when she was born! I asked her to re-measure -- and sure enough, she came up with the same number! I started to panic a bit because her head had been 43cm upon discharge from the NICU 2 weeks earlier and I had failed to measure it at home with any consistency.  I had a minor "freak out" and messaged my Hydro friends on the message board -- and much to all of our relief, it turned out to be an error.  When the CNP came into the room, I had her re-check Meagan's head and give her an exam.. and it all checked out ok.  Her head circumference was actually 43.8cm.. a lot better than 49cm! I was relieved. 

Once we were all checked in and got into our day hospital room, we started the long wait.  They won't start thawing the stem cells until we are actually in the room waiting because if they start to thaw them anticipating our arrival, and we get held up for some reason, the cells will go to waste.  So we had about 2 hours of 'dead time' while we waited for the cells to thaw and be transported from Duke's lab.  Once the cells arrived, the CNPs came in and started to prep Meagan for her infusion.  She got a little bit of Tylenol to take the edge off any discomfort.  Then Dr. Kurtzburg came in and did Meagan's IV.  She then gave her some Benedryl and a steroid drug (also for anti-allergy as well) through the IV.  These drugs are given as a preventative measure.  When the cells are frozen, they have a preservative added to keep the cells alive.  When the cells get thawed, most of the preservative is washed away, but some tiny amounts remain.... so the Benedryl and steroid are given just in case the child has a reaction to the small remnants of the preservative.  In over 400 patients, they said only 2 or 3 have ever had an allergic reaction.  Considering Hydrocephalus in and of itself is also a rare percentage, I wasn't too concerned because the possible benefits of her receiving her stem cells outweighed any minute chance of an allergic reaction. 

As soon as everything was set and the medications were given, Dr. Kurtzberg came back into the room along with two CNPs and a few other staff members.  Also, a musician named Terry came to offer some music therapy/calming lullabies for Meagan while she had her infusion.  As a musician myself, I thought this was wonderful! And as a mom, I thought it was a well thought out procedure - making it as little like a "hospital procedure" as possible for these kids.  Once the infusion started, it only took about 10 minutes, maybe 15 total.  Dr. Kurtzberg does the procedure herself, which was wonderful to watch.  Then Meagan was hooked up to about 2 hours of IV fluids to make sure she was well hydrated.  She continued to rest and we waited patiently for the process to conclude.

Go cells go!

Dr. Kurtzberg, Brian, me, and Terry the music therapist

Meagan resting comfortably after her infusion.

Right before she was going to be discharged, Dr. Kurtzberg came back to talk with us.  She explained that the thought is the cells hopefully travel to the brain to possibly help some of the brain damage that was caused by the severe pressure due to the Hydrocephalus. Nothing is "proven" as of yet, but, this is at least the thought behind these treatments for Hydrocephalus kids.  Proof or not, since it can't cause Meagan any harm, we decided to do this for her - because if the study is finally proven years down the road, we would feel awful we didn't have her involved in such an opportunity.  Meagan has nothing to lose.

 She also told us we may experience a "cream-corn" type smell from Meagan's breath over the first 24 hours because of the remnants of the preservative leaving her system, but otherwise, should have no other side effects or problems.  The doctor was certainly right about the smell! The poor baby smelled like corn for the next day or so.  The smell of corn overtook our hotel room, our car, and about anywhere else we went.  Our 5 year old, who is very sensory "sensitive" commented on it almost immediately... "Mama.. Meagan's breath is stinky!!"  Haha.. But, it went away and all was well again.

We headed home Wednesday morning after calling Dr. Kurtzberg's CNP saying Meagan had done great the night before... we drove a few hours to Brian's sister's home, picked up our girls, enjoyed a nice family lunch, and then continued on to Atlanta.

 It's really amazing work she and others are doing -- it is still in experimental mode, but, I don't doubt that in 5 or 10 years, we'll hear of wonderful things these stem cell therapies are doing for kids with brain damage.  We have seen so many promising results from cancer patients, and patients who suffer from other diseases and conditions, hopefully similar results for Hydrocephalus children will follow. Even if it's not in our lifetime, or Meagan's, we feel wonderful knowing she is involved in a specific study that is first and foremost, completely ethical and favorable to life, and secondly, doing amazing things to help those with Hydrocephalus.  It is a bit hard to "see" any specific changes the cells may be making in Meagan because of her young age, but, we have heard many many positive stories from other Hydro families.  She will go back around 6 months old and then again before a year old for 2 more infusions.  At those older ages, sometimes it is easier to "see" a sudden change in the child after their infusion, such as doing something they weren't beforehand, or overcoming a developmental hurdle they had been struggling with..etc...

Brian, me, and Meagan with Dr. Kurtzberg after Meagan's infusion.

 Lastly, I must give credit to my OB, Dr. C, for Meagan even being able to receive these stem cells.  It was up to her to capture and collect, successfully, Meagan's cord blood which contained these cells.  It is very common for some of the cord blood to be given for blood testing, blood typing, and other early tests newborns go through.  My OB explained to me before delivery, that if it was ok with me, she was planning on capturing all she could just for the Duke study.  She told me it may mean Meagan would have to be stuck again in the NICU for the other blood tests, but, that she felt it was more important to give as much cord blood as possible to the Duke study considering Meagan's condition and our reasoning for capturing her cord blood.  I 100% agreed with her - and she certainly stood by her word.  Because of her diligent work at delivery, over 520 million cells were able to be processed for Meagan! This means she has enough for 2, or even 3 more infusions depending on her weight gain! This is incredible because it means Meagan can have 3 or 4 total infusions - which is absolutely wonderful!  So, I thank Dr. C for all her hard work and for her ability to gather so much cord blood at Meagan's birth.  It really is because of her efforts we could even entertain the idea of traveling to Duke and being part of this wonderful study.

Dr. C holding Meagan almost 6 weeks after she helped deliver her into this world.


  1. It is so amazing that they can do all of these things with cord blood. Isn't it wonderful and miraculous? Thank you for sharing this part of the story, I think it can give others so much hope.

    Her little cheeks are getting so chubby! She is beautiful!

  2. Thanks for posting your story!! It's nice to hear that things went so well for her infusion. Makes the "unknown" a little less scary for us...