Monday, September 30, 2013

DOT +18

Patrick enjoyed having Dad around this past weekend. He said goodbye to him this morning and looks forward to seeing him again on Saturday!

Our daily clinic trip brought some good and bad news. The bad news is that the blood counts decided to drop with the white count back at the bottom. The good news is that the doctors are not alarmed with this at all, it is a very fickle process. A little increase on the white count would be a nice mood booster!! Grow cells, grow!!

We learned today that the IV antibiotics, which Patrick has been receiving since his fever last Tuesday, will continue until the counts increase. No more quick trips to the clinic until then!

Today was chocked full of visitors! Derry stopped by on her way back to Greensboro, Pat came for a visit and brought some yummy food for this week, and Carole Garvey came and brought us a delicious dinner. Carole also brought Patrick a soft comfy throw, her timing could not be more perfect because I just threw ours away… it was shedding all over the apartment! Thank you all!

Patrick continues to have some back pain, which may be related to the white cells moving in. Back pain is a possible side effect with grafting. His appetite has been steady and he has been a little tired. He walked a mile tonight and his spirits continue to stay high. God is good!

Thank you for all your continued prayers.


xoxo. caroline

Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God.
- Philippians 4:6

Labs from today:
Test
Patrick
Normal Range
White Blood Cell Count
<0.10
3.2-9.8 (this will go to zero)
Hemoglobin
10.1
13.7-17.3 (they try and keep it above 8.0)
Platelet Count
19
150-450 (they try and keep it above 10)

Sunday, September 29, 2013

DOT +17

Dad again...hello from Durham. Today our clinic visit was scheduled for 11:00 a.m. After the usual scrub up before entering the clinic Patrick checked in for lab work. His labs were drawn and 2 antibiotics were hung for infusion. While the antibiotics were being infused Patrick's labs came back. All of his labs were steady which meant he would not need any blood products or vitamin supplements today. This is always good news. Shortly past 2 o'clock the antibiotics finished pumping and we left the clinic.

Patrick's back was hurting him today and the nurse instructed him to take some of his pain medicine when he got home. On the way we grabbed Firehouse Subs for lunch. As usual Patrick had to remain in the car while I grabbed a takeout order. He can't be in public spaces around any crowds because of the germ risk. After lunch Patrick took some pain medicine and soon he was taking a long nap.

Patrick still has a little pain in his back tonight but he says it is much better. We just walked around the apartment complex foot path twice which is about 1 mile. Exercise is very important and something we try to do daily. I guess we'll settle in to watch the Falcons/Patriots game tonight before starting another week. Mom will take over tomorrow while I head back to Florida for work.

Thank you all for caring. Patrick has an incredibly positive resolve and a "let's get it done" attitude at a really uncomfortable time for him. He's getting through this in part with your help.

-Dan

I am still confident of this: I will see the goodness of the Lord in the land of the living. Wait for the Lord; be strong and take heart and wait for the Lord.

-          Psalm 27:13-14

DOT +16

Patrick and mom made their daily visit to the clinic for labs and a medical provider visit. After the labs were analyzed they indicated Patrick needed antibiotics and more potassium supplements. These all had to be pump infused so it took over 3 hours. His blood rates were stable from yesterday to today so we are continually hopeful the blood levels will increase going forward.

I arrived today to give mom a break. I will stay until Monday. Neither one of our football teams did well today. UNC and Ole Miss both lost.

Thanks everyone for your continued support and prayers.

-Dan

I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well.

-          Psalm 139: 14 

DOT +15

Today was a good day… no double decker pump!! Patrick only needed antibiotics and potassium. His platelets went up to 25 on their own and white count is still 0.1. We were lucky to have our favorite nurse, Katie, for the entire week. Katie went to UNC which makes her an even better nurse!!

I went to Durham this afternoon and hung out with Patrick while mom ran some errands. Mom and John are now out to dinner while Taylor and Bennett are at the apartment making dinner for Patrick. Patrick loves having Bennett there to hangout so they can play Xbox… learned this afternoon that’s something I can’t do!

Patrick goes in tomorrow at 11, so hopefully he will be back at the apartment in time to watch football. Dad is back in town and coming tomorrow for the rest of the weekend.

Thank you for all your thoughts and prayers!!

Xoxo,
Mary

But those who hope in the LORD will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint.
-          Isaiah 40:31





Thursday, September 26, 2013

DOT +14

Mom and Patrick arrived at the clinic today and went through the normal routine. After the labs were taken, the PA came by to discuss the results. She told them that both Patrick’s white count and platelets had slipped slightly. She was a little surprised but this is the nature of the beast!

Taylor got a chance to visit the clinic and brought Mom and Patrick lunch, thanks to Taylor! I am so upset I haven’t been able to get over to Durham this week, I am hoping I will make a trip over there this weekend!!

Patrick had so many infusions today that he had a double decker pump. He received three different antibiotics (protocol since fever Tuesday), magnesium, and potassium all at once. We are thankful that they could be synced, if not, Mom and Patrick could still be at the clinic!

Ever since we started this process, the clinic has more than stressed how important it is for the patient not to fall, as falls can be devastating with such a weakened system. There is a bulletin board about falls and a calendar noting the last fall. If a patient falls, they receive a bright yellow wrist band and have to be transported everywhere via wheelchair. Today Mom hit a patch of water and slid down the hall like heading to first base... thank goodness it was Mom and not Patrick. She didn't have to ride in a wheelchair, wear a yellow wrist band, or get posted on the board, but she was humiliated when they had to file an accident report. Patrick has had fun teasing her tonight!! 

Mom and Patrick are back at the apartment, they have had a quiet night. After dinner they walked around the apartment grounds and were humored when they saw a neighbor walking her cat on a leash. This made the walk a little more bearable for Patrick.

Our family cannot thank you enough for your support. Patrick really appreciates the cards. It is a treat to have “real mail”!

Xoxo,
Mary

For I am the Lord, your God, who takes hold of your right hand and says to you, do not fear; I will help you. 

-                 Isaiah 41:13

L    Labs from today: 
Test
Patrick
Normal Range
White Blood Cell Count
0.1
3.2-9.8 (this will go to zero)
Hemoglobin
10.5
13.7-17.3 (they try and keep it above 8.0)
Platelet Count
24
150-450 (they try and keep it above 10)

Wednesday, September 25, 2013

DOT +13

We received some great news today, they think Patrick is engrafting!! Looks like 13 isn't so unlucky after all. We asked Patrick how today went and he said “Well my white count went up to .2 so that’s really good. Today was just a lot better… I’m not as tired, my back doesn't hurt, and I haven’t had any fever.” The symptoms that Patrick had yesterday were probably due to the cells engrafting. They thought that he would need platelets today, but they went up on their own. 

It was a long day at the clinic, Patrick received more antibiotics and potassium. Our dear friend Suzanne came by for a visit and humored Patrick with her wittiness! John joined mom and Patrick for taco salads tonight. Mom and Patrick are both very tired, they did not get back from the hospital till 2:40 AM. We are cautiously optimistic during these next few weeks, we are hoping for more good news tomorrow!!

xoxo,
Mary and Taylor

Rejoice in the Lord always. I will say it again: Rejoice!
- Philippians 4:4 

Labs from today:
Test
Patrick
Normal Range
White Blood Cell Count
0.2
3.2-9.8 (this will go to zero)
Hemoglobin
9.9
13.7-17.3 (they try and keep it above 8.0)
Platelet Count
27
150-450 (they try and keep it above 10)




Tuesday, September 24, 2013

DOT +12

Hey! It's mom again... things are continuing to move along here in Durham County.  As The Shirelles sang many years ago "Mama Said There'd Be Days Like This"

Patrick woke up this morning and said "I am so tired and my back hurts, but just don't know why"... that is what I call having your glass half full.  Soon after we headed to the clinic where we were greeted by one of our favorite nurses, Katie. She reassured us that the tiredness is very normal for this stage of the transplant and also made us feel better about the backache when she told us it could be caused by the new cells... those words made the back pain much easier to handle!

We spent about 4 hours at the clinic, Patrick needed both magnesium and potassium. Other labs were about the same as yesterday which is good. The white count could start to rise any time now but as we notice every day, each patient is different, so we wait patiently and try not to analyze too much... not an easy task for me! Grandmother Pat stopped by for a visit and helped us pass the time by making us giggle on her mini tour of the Duke campus before finding the clinic!

We arrived back at the apartment and Patrick dozed off while watching TV. After he woke up, he had fever and chills. We called the after hours number and were instructed to head that way, so we wheeled into the emergency room and were promptly ushered to a room in the bone marrow unit. John came by to check on us but I made him head back to Chapel Hill after learning we would be here for more than a couple of hours...thank you, John!

It is now close to midnight and Patrick is receiving the first of three antibiotics they are giving for the next three days as a precaution. They are also doing blood cultures but err on the safe side until the cultures come back! We hope to be back at the apartment by 1:00.

So mama said there will be days like this, and Patrick is taking them one day at a time, which is teaching me to do the same. Thank you, Patrick.  You are not just my rock, you are my boulder!

xoxo

Pray continually.
- 1 Thessalonians 5:17 




Monday, September 23, 2013

DOT +11 bye-bye hair!!

Hey everyone! Today marks Patrick’s first day of being bald, and boy he can rock it!! Thank goodness Pearl, one of Patrick’s sweet nurses who likes to shave hair, was there today. Patrick says “my head feels like Velcro.” Which was interesting because it looks so smooth. 

Other than saying bye-bye to the hair, today was a good day. Patrick’s platelet count went up on its own which is very encouraging. He and mom took a longer walk around the apartment grounds which was great, especially on this pretty day. Mom grilled chicken kabobs and veggies for dinner, one of Patrick’s favorites. They are now watching football and beginning to wind down.

We continue to be thankful for all of the good days that Patrick has had. God is good! Thank you for all of the emails, texts, cards, packages, and prayers… It means the world.

Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own. – Matthew 6:34

-Mary

Labs from today:
Test
Patrick
Normal Range
White Blood Cell Count
<0.10
3.2-9.8 (this will go to zero)
Hemoglobin
12.1
13.7-17.3 (they try and keep it above 8.0)
Platelet Count
21
150-450 (they try and keep it above 10)



Sunday, September 22, 2013

DOT +10

Dad again...back to the clinic this morning for daily labs and evaluations. The platelet infusion yesterday is holding steady and Patricks' platelet count today remained in the acceptable range. All of his other blood and electrolyte levels were positive also. We'll head home a little early today to watch the NFL and golf. Hopefully the Panthers will play well and win today. The Braves and Tar Heels were tough to watch yesterday.

Mom had to learn how to change Patricks dressing today for his chest port just incase it needs to be changed while we are not at the clinic(picture attached). Hopefully we will not have to perform this on our own but we are ready if we need to.

Patrick wanted his hair cut off today but the lady who shaves it wasn't there today like everybody originally thought. The hair will come off tomorrow. It's falling out in clumps. Probably will need Roto Rooter after his next shower.

Today marks the first day that Patricks' white cell count could start to regenerate/boost. The chemo wiped out his white cell count initially so he could accept the transplant cells. Now his white cell count will slowly build back up. There was no evidence of that today but we should see it sometime in the next 4 days. Exciting.

Taylor will be visiting today on her way back to Raleigh from Greensboro. She was in Greensboro last night babysitting for her niece and nephew Joseph & Margaret Stanley. They had a great time. Mary and 2 of her friends came by for a brief visit yesterday.

Patrick's appetite continues to be very strong and he has kept his weight mostly stable so far. He has been eating like a goat. This is not the norm but is a positive thing because he needs to eat to maintain strength and energy. We hope all continues to go well and stay positive. I'm off to Florida for work tomorrow so mom will take over this afternoon until next weekend.

Dan




Saturday, September 21, 2013

DOT +9

Dad again... As anticipated Patrick needed an infusion of platelets today. This takes about an hour once the platelets arrive from the main hospital blood bank. Then there will be some post infusion labs before we are able to leave. We are checking the UNC/Georgia Tech score and UNC is winning 13-0 right now. We hope that holds up.

Patrick has decided to go ahead and have his hair cut off. It started to fall out in the shower this morning so he wants to have his head shaved in the clinic tomorrow. There is a lady available who does it for those patients who can't have contact with the public.

Patrick's cousin Burns Blackwell came down to visit today. He attended his one year anniversary reception marking his successful transplant last year. That is so remarkable. We can't thank him enough for his support and first hand knowledge/advice during this process.

I think sister Mary also plans to come by. The few visitors Patrick gets are usually on the weekends just because people typically have to work during the week. He can have visitors as long as he feels up to it but just can't be in public around a lot of people. Visitors have to wash there hands well as a precautionary measure against germs... there is lots of hand santizer around the apartment. 

Mom just stopped by the clinic with a few sandwiches for lunch. Later today when we get back from the clinic we will probably watch golf and football.

Thank you for all your prayers and support.
Dan

Labs from today:
Test
Patrick
Normal Range
White Blood Cell Count
<0.10
3.2-9.8 (this will go to zero)
Hemoglobin
11.9
13.7-17.3 (they try and keep it above 8.0)
Platelet Count
4
150-450 (they try and keep it above 10)


DOT +8

This is dad taking over for a few days. I think Patrick has settled into a good routine with his daily visits to the ABMT clinic. Today his visit went well and all he needed was an oral potassium supplement. His platelets were boarder line low so he'll probably need an infusion of platelets tomorrow. He's taking it one day at a time. His appetite continues to be strong which is a very good thing considering most food doesn't taste normal. Probably helps that he watches several hours of the food network every day.

Patrick is very thankful to everyone who has sent him letters, packages, cards, and prayers. One of the difficult parts of this process is that he has very limited contact with people. He misses all of his friends and family and looks forward to seeing everyone when he can.

Dan

Labs from today:
Test
Patrick
Normal Range
White Blood Cell Count
<0.10
3.2-9.8 (this will go to zero)
Hemoglobin
12.1
13.7-17.3 (they try and keep it above 8.0)
Platelet Count
20
150-450 (they try and keep it above 10)


Thursday, September 19, 2013

DOT +7

Hey everyone!! I cannot believe it has been a whole week since Patrick received his 7.31 MILLION stem cells!! God is good! Mom is finally back in Durham, she was so happy to see him. Patrick had another good day today. His potassium was a little low, so he had another IV. His platelets are continuing to fall, but they will not give him any until they are less than 10. His appetite is pretty good but food is not tasty and very metallic. Patrick is still tired, but he took a stroll around the apartment grounds and did great! Hopefully each day he will stroll further as it is very important to exercise to get his blood flowing and things moving around. Hair is still around… yippee!! They say he will lose it about 2 weeks after chemo, which is approaching. This will be the one time Mom will ever let him have a Mohawk… ha!

We are lucky to have a great PA that we have seen almost every day, his name is Brent. He always has plenty of time for questions and describes everything to a tee, which Mom loves. Patrick humors the clinic staff with his array of Hawaiian shirts. They vary from pink flamingos, its five o’clock somewhere, Hawaiian flowers, to beautiful bright fish. The shirts are quite a conversation piece. 

We are truly grateful that Patrick continues to have good days. We know that there will be some not so good days in the future, so each good day we have is a gift. For the next 2 weeks or so, we are in the waiting period. When Patrick’s white count starts to rise, this will hopefully mean the donor cells are moving in!

I would like to share a story by Anne Lamott that Ms. Bradbury, the Assistant Dean of Students and Director of Student Life at Saint Mary’s, told me at the beginning of the year. It is very inspiring and helps me get through things one step at a time.

"Years ago my older brother, who was ten years old, was trying to finish a written report on birds. He was given three months to write it, and it was now due the next day. He was sitting at the kitchen table close to tears, surrounded by paper, pencils, and unopened books on birds. My father sat down beside him, put his arm around my brother’s shoulder, and said ‘Bird by bird, buddy. Just take it bird by bird."

Patrick,
Bird by bird, buddy. Just take it bird by bird! I love you!

-Mary


Labs from today:
Test
Patrick
Normal Range
White Blood Cell Count
<0.10
3.2-9.8 (this will go to zero)
Hemoglobin
12.7 
13.7-17.3 (they try and keep it above 8.0)
Platelet Count
41
150-450 (they try and keep it above 10)

Patrick and Brent (a little blurry!!)

Wednesday, September 18, 2013

DOT +6

Hey everyone! Today was another good day for Patrick. He and Taylor went to the clinic this morning to get daily lab work and meet Dad. Patrick’s potassium was a little low, so he had an IV for about an hour. He is feeling pretty good but pretty tired. Mom says she is about to jump out of her skin because she wants to see him!! She was feeling a lot better today and is hoping she will head back to Durham tomorrow.

Labs from today:
Test
Patrick
Normal Range
White Blood Cell Count
<0.10
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
48
150-450 (they try and keep it above 10)

Thank you for all your thoughts and prayers!!

-Mary

Tuesday, September 17, 2013

DOT +5

Hey Everyone! 

I can not believe that 5 days have gone by and Patrick is still doing great. He is amazing the staff at the clinic!! Today was another quick day at the clinic. Patrick was in and out in an hour! 


Labs from today:
Test
Patrick
Normal Range
White Blood Cell Count
<.10
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
75
150-450 (they try and keep it above 10)


Dad has been with Patrick since Saturday and I met them at the clinic. Dad has gone to Charlotte for the night to see Steely Dan. Unfortunately Mom had a fever this morning and so she can not be around Patrick until she feels better. We have to be very careful because Patrick's white blood cell count is below .1 therefore he has no immune system! His white blood count will stay here for about a week before it starts going up again.

Mary, John and I stepped in this afternoon to help. John just left and it is just P and I for the night! 

Mom is SO sad that she can not be with Patrick....she has been resting today and we hope that she will feel better in the morning! We are missing her at the apartment!! Hope you feel better Mom :) 

Mom is trying her best to make sure Patrick has lots of options for food since he basically has no appetite. She made some of his favorites yesterday: vegetable soup, chicken pie, raspberry salad. Unfortunately we had to throw most of it away because our freezer stopped working!! We still have plenty of treats though!!!! 

Thank you everyone for keeping us in your prayers!! This has been an amazing experience so far!! 

XOXO Taylor 

Monday, September 16, 2013

DOT +4

Hey everyone, another quick post! Things went very well today, and Patrick did not need anything. Dad is in Durham for one more night, and Mom will come back tomorrow. I am planning on making a trip to Durham tomorrow and cannot wait to see Patrick!!

Labs from today:
Test
Patrick
Normal Range
White Blood Cell Count
0.2
3.2-9.8 (this will go to zero)
Hemoglobin
13.4
13.7-17.3 (they try and keep it above 8.0)
Platelet Count
100
150-450 (they try and keep it above 10)

If the Lord delights in a man’s way, he makes his steps firm; though he stumble, he will not fall, for the Lord upholds him with his hand.
Psalm 37:23-24

Thank you for the prayers and support!

-Mary


Sunday, September 15, 2013

DOT +3

Quick post! Today was another good day. Patrick’s labs were good, and he did not need anything. His white count is about to bottom out!

Labs from today:
Test
Patrick
Normal Range
White Blood Cell Count
0.7
3.2-9.8 (this will go to zero)
Hemoglobin
13.1
13.7-17.3 (they try and keep it above 8.0)
Platelet Count
128
150-450 (they try and keep it above 10)

“Choosing to be positive and having a grateful attitude is going to determine how you’re going to live your life.” – Joel Osteen

Thanks for all the support, and please continue to pray for Patrick!

-Mary