DOT +2

Hey everyone. Today was an overall good day! It's Dad's 55^th birthday, Happy Birthday Pops!! I know Patrick is glad that he is back in town so they can talk football. Poor Patrick is trying to keep up with the Ole miss vs. Texas game, but he can’t get it on cable. Aunt Anne is in New Orleans watching the game on TV, and is keeping Patrick posted... hotty toddy!!!

They didn't have to be at the clinic till 12:30 today, so Patrick got to sleep in. He has been very tired lately due to his white count dropping. He only had to get labs done today, which went fairly well. Potassium was low, but he was able to take a pill instead of an IV. He still doesn't have an appetite and not much taste either. 

They will go in again tomorrow at 12:30 to get labs and see if he needs anything. This will become the daily routine. The nurses are still great, we could not be more pleased with the clinic!

Labs from today: 

Test	Patrick	Normal Range
White Blood Cell Count	2.0	3.2-9.8 (this will go to zero)
Hemoglobin	13.0	13.7-17.3 (they try and keep it above 8.0)
Platelet Count	118	150-450 (they try and keep it above 10)

Thanks to everyone for the support and Happy Birthday Dad!! We love you!!!

-Mary

DOT +1- post from Mom

DOT +1 (yippee... we are in the positive!)

Hey all...it's Mom...words cannot express the emotions I have felt over the past week.  I am so grateful that Patrick has the opportunity to get rid of this disease that has been "a thorn in his side" since birth. I just wish my mom and dad were here to experience this miracle! 

Today was a very quiet day. Patrick and I went to the clinic at 8:00 and were out of there by 11:15. Patrick's blood counts are starting to drop which is a very good sign that the chemo is getting 'er done! His white count was 7 yesterday and 3.3 today. Patrick spent the afternoon watching television and enjoying visits with Aunt Derry and cousin Detgen. Thank you for visiting!!

Many people have been asking if Patrick is having a bone marrow or stem cell transplant. Both terms are used interchangeably, but the important thing to remember is that ALL transplants are technically stem cell because it is immature blood stem cells that are used. They may, however, be taken from either the bone marrow or circulating blood.

We are ready to take the next step in this process which may be quite a roller coaster! During the next several days, Patrick's counts will drop very low which means his own white cells are literally being wiped out which will wear him out!!  In the meantime, the donor cells will grow and hopefully graft in the next 2-3 weeks. During this waiting time, blood and platelet transfusions are expected to be needed. Risk of infection is very high and will be closely monitored. We wash our hands and use hand sanitizer very frequently! One of Patrick's nurses says she has washed her hands so much she has taken her fingerprints off... ha! 

Taylor, Bennett and John came over tonight and we cooked steaks. Patrick opted for a pizza but having the company was so nice, because me asking Patrick how he is feeling is getting old very fast! Dad Dan returns from his work trip tomorrow afternoon, Patrick can't wait to see him so they can talk football which I am just not good at doing! Dan's mom, Pat, has been visiting the past few days and will head home tomorrow. 

Thank you thank you for all the love and support you all have given these past several days. Your support is making this process much easier. Lets pray that the donor cells like their new home! xoxo

DOT 0- day of transplant

Hey Everyone! Today was transplant day, and Patrick received 7.31 million stem cells in 35 minutes... unbelievable. Everything went as planned, now we will just wait and pray that they take. Lets hope they like their new home!! Patrick said he is feeling fine, all things considered. He had lots of family visits today, unfortunately I could not be there because I have a cold... but I sure have been thinking about him all day!

Tomorrow he will have a checkup at the clinic, and if everything is looking good he will be able to go back to the apartment. I still can’t get over his positive attitude. We were talking on the phone this afternoon and he said "I am just waiting to see what the next day brings."

I came across this bible verse that is very appropriate for Patrick's journey...

Be patient, therefore, brothers, until the coming of the Lord. See how the farmer waits for the precious fruit of the earth, being patient about it, until it receives the early and the late rains.

To me, Patrick is like the farmer who waits for his plants to flourish and grow. He has patience and faith that God will provide him what he needs to be cured.

Thanks to everyone for your prayers and support!

-Mary

DOT -1 last day before transplant

Hey it’s Patrick! Thank you all for following my blog...we have had almost 2,000 hits thus far which really warms my heart. 

The past 4 days have gone about as I expected and with all of the wonderful drugs to ward off side effects, I may say possibly a bit better than expected. Today is my last day of chemo which is being administered as I write.

My emotions are running high, thinking about not having to take daily antibiotics and worry about infections creeping up is an incredible feeling. Even though I have been so very fortunate to not have frequent infections, it is always in the back of my mind. When I was in third grade Dr. Buckley wanted me to have this transplant, and the only way to do it then was by perfect sibling match. When Taylor and Mary tested negative, this was put out of my mind. Thanks to the advancement in medicine I am now able to get cells from anyone who is a perfect match.

I have been thinking a lot about the donor I know nothing about, wondering where he lives and what he looks like. I know one thing I don't have to wonder about is that he is a very generous, kindhearted, thoughtful human being, which is pretty rare these days.  Thank you donor- just hope I have the opportunity to thank you in person one day.

So I march on through this journey with cells coming tomorrow. I know that I have a very tough road ahead with various issues that may arise but I am ready to face whatever comes my way and know that the doctors here can handle any problems that may occur.

A big thanks to everyone who has supported me over the last few days, especially my family.  My mom has been great, coming to the clinic with me every day, and being my “at home” nurse. My dad has been out of town, but we have been in touch daily. I look forward to spending time with him next week. My step dad, John, has been a huge help.  He is always willing to bring me anything I need since he is just a car ride away. Also my grandmother, who will be here tonight and making frequent visits. Can’t forget about my sisters, Taylor and Mary, y’all are awesome. Thanks to you two for the superb blog posts, daily visits, and care packages. Thanks to all my visitors over the past few days, aunts, uncles, and cousins.

Lastly, I want to thank Dr. Buckley who pulled me through when I was very sick at 8 days old, for taking such good care of me since, and seeing me through this process. For you I am more than grateful.

Let’s move on and pray that the donor cells take!

Patrick and Dr. Buckley

Patrick and Nurse Katie, just finished up chemo!!

DOT -2

4:30 PM: Hey everyone! It's Taylor and Mary. We are currently sitting in the clinic waiting for Patrick's third round of chemo to finish. Today he has had 3 doses of chemo, Campath, Fludarabine, and Melphalan. Melphalan was new for Patrick, and required him to chew ice for 2 hours. This might sound fun since he loves chewing ice... Contrary to what you would think, chewing ice for 2 hours is not fun for anyone!! Patrick is not as tired today as he has been the past few days, he has only taken one nap. We brought him his new iPad today which will be very entertaining during these long clinic days!

Mom is out running a few errands since she has been here since 8 this morning. Once the chemo is done and the nurse has cleared Patrick to leave for the day, we will meet her back at the apartment.

10:00 PM: Today was a good day! He had no reaction to the chemo. Just got off the phone with mom, and Patrick has already gone to bed. They will have another early morning tomorrow at the clinic, his last day of chemo!!

Please continue praying for Patrick as he moves along in his journey!!

DOT -3

It’s Mary again! Mom and Patrick got back to the apartment around 10 last night. Mom said going to the emergency room was very easy, and it made a long day much better. They make it easier for bone marrow patients since their immune systems are compromised. Patrick hopped out of the car into a wheelchair and he was wheeled directly to his hospital room. They even took his chest x-ray and blood work in the room, how nice! They had a visit from John, my moms husband. He lives in Chapel Hill and will be making frequent visits!

Patrick had a much better day today tolerating the chemo… the only issue was some wheezing towards the end, which a breathing treatment helped. The nurses make things so much easier, and they are funny too!! When he started wheezing, the nurse told him he couldn't act up today after everything that happened yesterday… haha. Unfortunately I didn't get the chance to go to Durham today, but they had plenty visitors! Burns had a checkup with Dr. Chao, so he and Laura stopped by. He also had visits from my Aunt Tish, Aunt Derry, and Uncle Harden.

Patrick is such a trooper, I am so lucky to have him as my brother! He has an amazing attitude and is ready to bring it on with this transplant. Our whole family is thankful for Patrick’s donor. All we know about him is that he is a 26 year old male. As my cousin John knows, since he was his brother Burns’ donor, it is also a very painful process. We hope to be able to reach out to him and possibly even meet him one day.

Mom and Patrick are finally getting settled into apartment life, she said it’s kind of like playing house! Mom has brought some trinkets from home to make it feel more comfortable.

Thanks to everyone for your prayers and support. God is good!

DOT -4 first day of chemo

Hey, it’s Mary. Today was Patrick’s first day of Chemo!! He did great, the nurses at the ABMT (Adult Bone Marrow Transplant) Clinic make you feel right at home. They were also very pleased at how smooth the day went, there were only a few expected bumps in the road. After a few hours of receiving chemo, Patrick got the chills, which is very normal. The nurses gave him a dose of Demerol and they went away in no time. About 30 minutes after his first reaction he could feel the chills coming on again. The nurses gave him another dose of Demerol, and they were gone! Patrick finished his chemo around 2:30. They like to keep you at the clinic for about an hour after you finish to check for good vital signs. We didn’t leave the clinic until 4 because he was asleep, that’s what all those meds will do to you!! Dad went back to Greensboro. My mom, Taylor, and I went back to the apartment with Patrick. Taylor and I left Durham around 5 to head back to Raleigh. Patrick spiked a fever around 5:30 which is very normal. He and my mom are now at the hospital receiving antibiotics, they will be released in a few hours if all is well!

Just a little note- All of the days leading up to the transplant will be negative numbers, so today was -4 and tomorrow will be -3. Transplant day (Thursday) will be 0. All days following the transplant will be positive numbers, Friday +1, Saturday +2, and so on...

Thank you for all of your thoughts and prayers!!!