The Energizer Bunny

Dylan,

It is Friday, and 3 days post stem cells and your father and I think you got some new batteries put in. We have both thought you seemed to be a bit wound up at times... not all the time, but when you get going, you seem to have an extra burst of energy.

We fly home from Durham/Raleigh, NC today and won't get in until late. Our plane is scheduled to leave around 3:45 pm, so we are just taking it easy and hoping to visit the pool before we leave today. But, as luck would have it, it is a bit overcast and there are thunderstorms forecasted. Hopefully those will subside before we fly out.

You are ready to go home and be in your own home. You need your own bed, music, toys... Your dad and I are looking forward to being home and starting in on your daily therapy. We are outlining a program that we will stick with daily which will include vision, vestibular, leg & back strengthing exercises, patterning, physical therapy, and an excellent nutrition program (you are already doing much of this work daily, and have been on a 'whole foods' nutrition program for about 3 years)... We know is helps you, as when we allow you to have non-whole foods, or something prepared in a restaurant, you do seem to be more agitated and have issues with your diabetes insipidus (your sodium level) and your need for water increases... and then you need to pee more. It seems to be a vicious cycle when you don't your whole foods.

We are off to the airport to go home today and hope you will sleep some on the flights.

We love you,
Mom

What's Next For You

Dear Dylan,

Last night and the night before you did really well. You really had no reaction to the re-infusion after you got past that first hour post infusion, and you being so out-of-sorts from the meds and the 7 people in your room all contributing to making it too warm in there (not to mention that you created your own heat trying to get up and away from all 7 of us).

Today & yesterday you were in an amazingly good mood. You are usually in happy spirits, but yesterday you seemed to be in a great mood and were very happy and playful. Today you were a bit more tired and finally took a good nap -- something you had not done since we have been here. You are also really cuddly and want to sit in my lap a lot of the time.

Yesterday we had a 3:00 appointment with the neurologist that Dr. Kurtzberg refers her patients to. Since it was at the end of the day, we didn't do any 'playing' other than going to the pool in the morning. It was nice outside all day.

We had today off -- no doctor appts and it rained most of the day (real rain -- with thunderstorms). We drove around through Duke University campus & also North Carolina University campus. I took lots of pictures of you in the car. We had bought a 'noodle' at the dollar store yesterday, so we could play in the pool with it. Since we couldn't play in the pool with it, we played in the car with it!! and then you finally dozed off and slept until we got back to the room. You still seemed tired after we got back here and that is when you took about a long nap here in the room. You needed that and are now awake and in another great mood.

_________________________

So, now the wait begins. Dr. Kurtzberg said that we really wouldn't see anything for about 6 months. They had done studies that tell them it takes about 6 months for these cells to be seen in the brain.

We had a great surprise on Tuesday, when June told us that they had held back about 20% of your stem cells. That means they are holding over 100 million that you could have at a later date, if needed. We also learned that you were given over 600 Million cells. Wow -- that was a lot more than we expected. We left Duke Children's Hospital feeling very positive and excited for you.

So, we begin our waiting and our continued prayers for a miracle in your little body. Your father and I are very thankful to Dr. Kurtzberg for providing this opportunity for you. She is doing an amazing thing for little ones like you and we are blessed we found out about this through ViaCord (the place where we banked your cord blood).

As I mentioned in my previous letter to you, the clinic where we saw Dr. Kurtzberg, seems to also take care of many children that seem to be fighting for their lives. It is pretty sobering to see all these children fighting for their lives and then there are a few of us, re-infusion patients, hoping to give you, our child, a much better life. I guess, Dylan, in the end we are all striving for the same thing -- a better life for our children, but the reality of just how fortunate we are that you made it through your difficult birth, and are still working hard to recover from a tough start, seems to really hit home in this environment.

We feel very blessed and are proud to be your parents.

Love,

Mom & Dad

Your Big Day - Post Re-infusion

Dear Dylan,

We made it! It was a long day, but we are home and settling back in for the night. You are one tough little kid.

Here you are in this picture waiting for your turn!

This is where your day started - a stay in the waiting room with a bunch of other parents and little ones, all waiting to be seen, and the sobering realization that we are in what seems to be the cancer/chemo clinic for toddlers, little children and teenagers. Wow -- what a tough & amazing job the people in this clinic have.

You were taken back to be weighed and measured about 11:00am and we were taken to a room where we would spend the day.

We made a little play area on the floor as it became obvious to us that you were going to go head first off the bed if we didn't actually help you get to the floor. A little while later a very nice woman named Colleen came into the room and we talked about your medical history and she examined you. We talked about current therapies and 'the program' that we have done with you (http://www.iahp.org/) for 3 years. (http://www.help4dylan.org/)

We were told there were 3 children like you getting a re-infusion of their own cord blood stem cells in the clinic today. They were both younger than you (2 years old or so). The younger children would be done first, and then it would be your turn. Kristin, the head nurse for the day, came in and gave you some Tylenol and told you that your turn would be coming.

About 2:50 the 'crew' showed up. That consisted of Dr. Kurtzberg, June, Colleen, Kristin (the head day nurse) and Teresa (another nurse). We all had to hold you tight as Dr. K tried to get the IV placed into a vein in your foot. I understand that she personally places all the IV'S for the re-infusions. It looked like that might work, but it wouldn't draw back blood, so we decided on a vein in your right arm. That was quickly successful, but, you were pretty upset by this time and couldn't stop crying (and screaming). Through the IV, they drew some blood and then gave you Benadryl & some kind of steroid(?). Then they started the IV drip with your stem cells in it. You wanted nothing more than to sit up, but the important job of actually re-infusing your cells had been started, and it was imperative that you remain lying down and still. I am sure you may have also been bent on tearing out the IV, since you weren't too happy it was there.

The actually re-infusion was only about 15 minutes, and then the IV was checked again and an IV drip solution was started. The IV drip was to run for 2 hours, but about an hour into the process, you managed to dislodge your IV line and it was disconnected. You were finally successful getting rid of that thing!

You seemed to have a pretty strong reaction to the Benadryl and were wired and very upset. You were really out-of-sorts and screamed for much of the next hour. We finally got you some snacks and one of your favorite toys (a belt you like to chew on & you give it to me to run my fingernails on and make you laugh) and that seemed to help you to settle down and bring a that cute & long overdue smile back to your face.

After the IV was removed, we changed your clothes (you were pretty sweaty with all that crying, squirming, wiggling & screaming), and I know that also helped you to feel better..

We hung out for the next couple of hours until Dr. Kurtzberg came back in and checked everything out. We had a few minutes to talk with her and Colleen and were released to go home (about 6:30pm).

Here is a movie of your day. Your actual re-infusion started at about 3:06pm. I noticed that the camera date/time stamp is early by an hour....

Dylan, we love you, and our prayer is that this day will prove to be a huge stepping stone in your life's journey. We will ALWAYS be by your side and WE CAN do this together.

All our Love,

Mom & Dad