DOT +48

Patrick's white count jumped from 1.4 yesterday to 8.8 today. That is a true roller coaster! Needless to say, no shots today. As I was talking to Nurse Matt today, he made the perfect comment "this is not a sprint, it is a marathon!" Amen!

God is good!

Stay tuned for tomorrow's update.

xoxo caroline

The Lord gives strength to his people; the Lord blesses his people with peace.

- Psalm 29:11

DOT +47

Dad again... Patrick's White Blood Count today showed an additional drop to 1.4. It was discouraging since 3 days ago it had risen to 5.8. The doctors, however, reminded us to stay positive. "I don't think you should be concerned at this point. Sometimes the marrow just takes longer to recover for unknown reasons." Patrick was put back on Neupogen, the bone marrow stimulant, to try and re-boost his marrow recovery.

At day 60 he will be tested again to determine donor cell percentage. It is possible that he will need additional donor cells if the test shows the need. So, there is no doubt that this journey IS a roller coaster and stressful physically & emotionally. Thanks to everyone's continued prayers and correspondence, Patrick continues to stay positive and move forward.

"Family is the most important thing in the world."

Princess Diana

Dan

Then you will call upon me and come and pray to me, and I will listen to you. You will seek me and find me when you seek me with all your heart.

- Jeremiah 29:12-13

DOT +46

Dad again... quick post. After a day off yesterday we returned to clinic for daily labs and a chest x-ray. Patrick's White Blood Count dropped to 2.6 which was over a 3 point drop. The doctors expected that big of a drop because they discontinued the bone marrow stimulant neupogen shots on Saturday. His labs looked great otherwise, so he will have the day off tomorrow and Thursday. Good news.
"You have power over your mind - not outside events. Realize this, and you will find strength."
Marcus Aurelius

Thanks for all of your thoughts and prayers.
Dan

And he said... "The Lord gave, and the Lord has taken away; Blessed be the name of the Lord."
- Job 1:21

DOT +45

Dad again...Patrick is 45 days in to his transplant journey. This is important because it marks the approximate halfway point in the most serious portion of his treatment. Being home for the Christmas holidays with family and friends is the goal now. Patrick's White Blood Count has steadily increased over the past 3 days. It went from 3.4(Thursday)to 4.2(Friday) to 5.8 yesterday. The white count range for a normal person is 3.2-9.8. Yesterday he did not need any supplements at the clinic. His labs looked so good that the doctors gave him the day off today. This is really great. It's the first day in the past 45 days he hasn't had to make the trek to the clinic to receive treatment. It actually feels strange not having to go. 

This past week started off with signs the transplant could possibly be failing to signs that everything is positive. One of Patrick's doctors had this to say about the results of the "Whose is whose" test we received Thursday. "Overall, of all of the cells in his blood, 77% are of donor origin! This is very hopeful!" Hopeful is how we remain here in Durham. Thanks for the continued thoughts and prayers.

"Either you run the day or the day runs you."

Jim Rohn

Dan

I am the vine; you are the branches. If a man remains in me and I in him, he will bear much fruit; apart from me you can do nothing.

- John 15:5

DOT +42

What a difference a day makes has never seemed as real as it did today. Needless to say, this week has been pretty disappointing with my white count not budging even with the Neupogen shots. However, we received some great new today. Seeing a smile on Dr. Chao’s face when I saw him said a lot, but when he said that he was pleased with the results of the RFLP test, that really nailed it.

There’s no doubt that there have been some hurdles to cross which have gotten me where I am today, often referred to by Mom as “the roller-coaster.” A couple of days ago I thought this was not going to work. The white count jumped around for days which was very frustrating. But today is another day and hearing that I have 77% donor cells was literally better than Christmas morning. Also, my white count jumped up to 3.4 which is in a normal human range. All great news. 

I know that I still have a long road ahead but I’m ready for whatever it may bring.

Thank you for all your support.

Patrick

Test	Patrick	Normal Range
White Blood Cell Count	3.4	3.2-9.8 (this will go to zero)
Hemoglobin	8.9	13.7-17.3 (they try and keep it above 8.0)
Platelet Count	12	150-450 (they try and keep it above 10)

 Give thanks in all circumstances, for this is God's will for you in Christ Jesus.

- 1 Thessalonians 5:18

Patrick and Kerry, Dr. Chao's PA

DOT +41

Great news!! Patrick's white blood count today was 2.9!!! We are hoping to receive "whose is whose" test results tomorrow.

God is good!

Thank you for all your thoughts and prayers!

I pray that out of his glorious riches he may strengthen you with power through his Spirit in your inner being, so that Christ may dwell in your hearts through faith. And I pray that you, being rooted and established in love, may have power, together with all the saints, to grasp how wide and long and high and deep is the love of Christ, and to know this love that surpasses knowledge- that you may be filled to the measure of all the fullness of God.
- Ephesians 3:16-19

DOT +40

As Mom said the other day "the roller coaster has reappeared but we know that this is only temporary!" Well we're back on it! Today Patrick's white count fell back down to 1.9. Since the white count is having trouble increasing, the doctors are thinking about possibly doing a bone marrow biopsy. He needed blood today and of course potassium (no surprise at all!). This took about 3 and a half hours and Mom and Patrick were back at the apartment by 12:30. 

We will hopefully get the results of the whose is whose test tomorrow. Please continue praying for Patrick's white count to increase with more donor cells that his own... sorry p!! Thank you for all of your support. God is good!

Xoxo,

Mary

And hope does not disappoint us, because God has poured out his love into our hearts by the Holy Spirit, whom he has given us.

- Romans 5:5

Test	Patrick	Normal Range
White Blood Cell Count	1.9	3.2-9.8 (this will go to zero)
Hemoglobin	7.9	13.7-17.3 (they try and keep it above 8.0)
Platelet Count	12	150-450 (they try and keep it above 10)

DOT +39

We've reached a new high! The white count today was 2.2. What a blessing!! The only thing Patrick needed was potassium which he was able to take by mouth. He is still receiving 2 shots of Neupogen daily. Mom said she is amazed about how well he is handling them because they don't feel the best!

Mom is now back in Durham with Patrick and Dad has headed back to Greensboro. Moms sister, Anne, from Edenton came by for a visit today. As always, Patrick enjoyed seeing her. Thank you, Anne! We are thankful for the arrival of a new family member, Robert Nash Gibson. Congratulations Catherine and Robbie!!

We are still anxiously waiting for the results of the "whose is whose" test. They should be here sometime this week.

Thank you for all your thoughts and prayers, they mean the world!

Xoxo,

Mary

Humble yourselves, therefore, under God's mighty hand, that he may lift you up in due time.
- 1 Peter 5:6

DOT +38

Dad again. All of our teams (Ole Miss, Red Sox, and Hurricanes) won yesterday so we took that positive energy with us to the clinic today. After Patrick's labs were run we received great news. His White Blood Count went up to 1.7 which is a new high. Yippee. In addition, he will not be receiving automatic IV antibiotics everyday. After 3 hours in the clinic we left with high spirits to pick up some lunch and watch the Panthers.

As I reflect on the past 38 days I realize that my faith, in so many ways and on so many levels, has kept me grounded during Patrick's transplant journey. The support we have had is truly amazing and remarkable. This coming week will likely bring us key information in assessing the path ahead. 

Keep the prayers coming!

Dan

For we live by faith, not by sight.

-          2 Corinthians 5:7

DOT +37

Dad again. I arrived yesterday for the weekend. Fortunately, Patrick's White Blood Count had positive movement up to 1.4 yesterday. It remained steady at 1.4 today too. We can't seem to experience an upward trend without having a slight retreat lately but are hopeful things will keep going up from now on. We of course are very interested in the results from the RFLP (Whose is whose?) test which should be back Tuesday or Wednesday and indicate host vs donor cell presence.

Fortunately, antibiotics were Patrick's only need at clinic today and we were in and out in 2 and a half hours. We had some welcome visitors today after clinic. Cousins Grayson & Detgen came by and so did Pat. Pat brought a tailgating lunch with fried chicken and deviled eggs which we enjoyed while watching afternoon football.

Looks like a night of sports on TV. Patrick hopes the Ole Miss throw Lynn sent him brings good luck against LSU tonight. All of the phone calls, cards, prayers, visits, gifts, and other support is very much appreciated and truly helps us all work through this journey. I can't thank everyone enough.

"When everything seems to be going against you, remember that the airplane takes off against the wind, not with it"

Henry Ford

Dan

But if we walk in the light, as he is in the light, we have fellowship with one another, and the blood of Jesus, his Son, purifies us from all sin.

- 1 John 1:7 

DOT +35

The roller coaster has reappeared but we know that this is only temporary!

Patrick's white count was 1.4 yesterday and fell to 1.0 today. My sister Anne commented on how lucky he is to still have "the number before the dot", as was mentioned in an earlier post. Gotta love the optimism!!!

Along with the white count plummeting, his platelets dropped to 10 and hemoglobin to 7.6, therefore Patrick had his fair share of infusions today… platelets, blood, two antibiotics and as always, good ole' potassium! Needless to say, what we thought was going to be a short day at the clinic ended up quite the opposite.

The doctors chatted and decided to double the Neupogen shots to try to whip the white cells into shape. This  may mean more pain but pain medicine is plentiful and close by! They are still convinced that Patrick's CGD is the culprit for the white count recovering slower than molasses in the wintertime.

We still have complete faith that this transplant is working and Patrick, once again, he is showing more strength than me. The majority of my strength comes from Patrick but having support from family and friends keeps me on my toes. One very special support system is my four sisters. They have been here with me through the tears, laughter, cursing and cheers. They are even known for sending pictures of encouragement of signs they see on the road (see below). They almost always know what time we are going to the clinic and anticipate an update on numbers. If they have not received a text from me with an update within a reasonable time, the texts are buzzing! Thank you sistas for your love and support. 

Patrick snoozed most of the afternoon and evening which is very normal with his numbers where they are. We are now watching the Heels and hoping they will surprise us with a win tonight.

Positive thoughts for good numbers tomorrow!!

xoxo caroline

Look to the Lord and his strength; seek his face always. 

- Psalm 105:4

A picture that my sister Tish sent me!

DOT +33

It is quiet around the apartment tonight with Mary back at school and no dinner guests. What a treat it was to have Mary with us for 4 days, Patrick misses having her around to pick on!

We had an easy trip to the clinic today with our visit lasting under 4 hours. Patrick’s white count remained at 1.3 which is a little disheartening, but the doctors feel very strongly that the Chronic Granulomatus Disease is causing the slow progress. "Slow and steady wins the race” has never crossed my mind as much as it has these past several days!

They will draw blood tomorrow for a test called RFLP which we have nicknamed “whose is whose”? This intricate test indicates what percentage of cells are Patrick’s and what percentage are the donors. We expect the results in about a week or so, it is going to be a long week! Rodney Strong will be a nice diversion!!

Patrick remains amazingly positive even with the numbers not soaring. This attitude is going to get him a long way in life and I am so proud of him!! Stay tuned for more updates.

xoxo caroline

Rest in the LORD and wait patiently for Him; Do not fret because of him who prospers in his way, Because of the man who carries out wicked schemes. Cease from anger, and forsake wrath; Do not fret, it leads only to evildoing. For evildoers will be cut off, But those who wait for the LORD, they will inherit the land.

Psalm 37:7-9

DOT +32

Another quick day in the clinic. Patrick needed antibiotics and potassium. His white count stayed the same… 1.3. We were back at the apartment by 2 and had a very quiet afternoon. Patrick took a long nap while Mom and I hung around. Taylor, Bennett, and John came over for a yummy dinner and we are playing Bananagrams as we speak!

We will go to the clinic tomorrow at 10 and go through the daily routine. I head back to Saint Mary’s tomorrow and will miss Mom and Patrick dearly!! I have loved spending the past few days with them!

Thank you for all your thoughts and prayers.

Xoxo,

Mary

Consider it pure joy, my brothers, whenever you face trials of many kinds, because you know that the testing of your faith develops perseverance. Perseverance must finish its work so that you may be mature and complete, not lacking anything. 

-      -  James 1:2-4

DOT +31

It’s Mary! Mom and I are now in Durham and Dad headed back home to go back to work. Patrick received antibiotics, potassium, and blood. Today was the second day trend of having a number before the dot on his WBC…1.3!! God is good!

We've had many visitors today. Tish and Joe, our Aunt and Uncle from Snow Camp. Also one of Patrick’s Greensboro friends, Jameson Midgett, stopped by on his way back to UNCW. Thank you all, we love visitors!!

Mom, Patrick, and I have been watching sports and playing board games all afternoon. Gotta love a good game of Sorry and Yahtzee! I am on fall break and don’t head back to school until Tuesday, so I look forward to spending time around here.

We will head to the clinic tomorrow at 10 am, let’s hope we can reach a three day trend of the number before the dot!!

Xoxo,

Mary

Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves have received from God. 

-         -  2 Corinthians 1:3-4

DOT +30

Hey all...dad again. Today was Patrick's 30th day since his initial transplant. One month in the rear view mirror. Historically, one of the ways people in various forms of confinement keep a positive outlook is to break things down into manageable time units. Even though Patrick will be under medical care for a prolonged period of time, his more restricted confinement involving daily visits to the Bone Marrow Transplant Clinic are estimated at 60-90 days. So, we are very very happy that we are at least a third of the way to the first finish line. Yippee.

In addition to this milestone, today Patrick's White Blood Count went up from .6 to 1. This was great news too! The ideal progression is for the donor white cells to engraft and replace Patrick's irregular cells. An increase in the WBC is what we pray for daily.

Patrick was tired again this afternoon and took a nice nap. We went out and took a good long walk after that and are looking forward to watching the Ole Miss football game tonight. Great day. Your prayers continue to help us along.

"The best way to cheer yourself up is to try to cheer someone else up"
Mark Twain

Dan

Look to the Lord and his strength; seek his face always.
- Psalm 105:4

DOT +29

Dad here again...another routine day at the clinic today. 3 hours of IV antibiotics and vitamin supplements. Caroline and Mary came by to visit on their way to Greensboro. Pat also came to visit for a few hours and brought us a nice dinner. After lunch Patrick was very tired and took a 3 hour nap. It was a busy week for him.

Thanks again for all the thoughts and prayers.

Dan

Every good and perfect gift is from above, coming down from the Father of the heavenly lights, who does not change like shifting shadows.
- James 1:17

DOT +28

Hello!

Patrick continues to sail through the Neupogen shots with minimal pain thus far. I must admit that this boy can tolerate pain! He once walked all over Washington, DC for the entire weekend with a broken foot!

The white count roller coaster continues, today it was .5. The doctors are thinking that it recovering slowly may be due to Patrick's Chronic Granulomatus Disease. However, they continue to be optimistic in thinking that it is just taking it's time. 

We had a lengthy day at the clinic as Patrick needed a blood transfusion as well as platelets, potassium and his daily antibiotics. The excitement of the day was the fire alarm going off. Thank goodness it is simply bright flashing lights and not loud alarms as the alarms from the IV's are more than enough noise!

Patrick enjoyed a visit from cousins Britton and Charles who came over after work from Raleigh, it is always nice to have visitors!

I will close with Vivien Leigh's end to "Gone with the Wind."

After all, tomorrow is another day!

Let's just pray that the stubborn white count moves north just a smidgen!

xoxo caroline

But those who wait on the LORD shall renew their strength; They shall mount up with wings like eagles, They shall run and not be weary, They shall walk and not faint.

- Isaiah 40:31 

DOT +27

Hey everyone... just a quick post. Patrick's labs stayed about the same today. He felt little pain today, similar to yesterday and the day before. He still continues to get the shots each day to boost his white count.

Thanks for all the prayers and support!

Find rest, O my soul, in God alone; my hope comes from him. He alone is my rock and my salvation; he is my fortress, I will not be shaken. My salvation and my honor depend on God; he is my mighty rock, my refuge. Trust in him at all times, O people; pour out your hearts to him, for God is our refuge.
- Psalm 62:5-8

DOT +26

Hello all...dad again. Today was a very exciting day at the transplant clinic. Patrick's lab work reflected a .5 point jump in his White Blood Count. We were hoping for an increase from the neupogen shot he received yesterday but didn't expect that big of a jump. The doctors were pleased too. He received another neupogen shot today and will probably continue to receive them daily until his WBC increases to target levels. Once they stop the shots, we hope the WBC will be stabilized on its own. If it is, for 3 days post neupogen therapy, that would be a good indicator that the donor cells have engrafted. That is of course our desired outcome. At this point we are able to test to learn the percentage of host VS donor cells which will paint a clearer picture of the path ahead of us. Of course, we are praying for a high percentage of donor cells when that happens!

After 3 1/2 hours of IV antibiotics and vitamin supplements today, we headed home. Patrick suffered more bone pain today because of the neupogen shot. He said it wasn't as bad as yesterday though. We walked a mile around the apartment grounds, even though it wasn't very comfortable for him. Exercise helps stimulate cell growth so we have to do it regardless. Thanks again for your thoughts and prayers.

"Attitude is a little thing that makes a big difference"

Winston Churchill

Dan

Trust in the Lord and do good; dwell in the land and enjoy safe pasture. Delight yourself in the Lord and he will give you the desires of your heart. Commit your way to the Lord; trust in him and he will do this: he will make your righteousness shine like the dawn, the justice of your cause like the noonday sun.

- Psalm 37:3-6

Labs from today:

Test	Patrick	Normal Range
White Blood Cell Count	0.7	3.2-9.8 (this will go to zero)
Hemoglobin	8.6	13.7-17.3 (they try and keep it above 8.0)
Platelet Count	13	150-450 (they try and keep it above 10)

DOT +25

Dad again....today was a long day at the clinic. Monday's involve additional tests and chest x-rays so it took about 5 hours. Labs were unchanged from the weekend so Patrick's doctors decided it was time to push the envelope and stimulate white blood cell formation. He was given an injection of a drug called Neupogen. This injection was given via needle in the stomach. It will help his bone marrow recover its ability to produce white blood cells. Unfortunately, the side effects are injection site and bone pain. Patrick didn't feel well after we left the clinic so he came home and took a nap. After he woke up the pain was all gone which is a good thing. Hopefully we will see an increase in his white count tomorrow. 

I have always liked to read quotes about any number of subjects. Most are thought provoking.

"Knowledge is knowing that a tomato is a fruit; wisdom is knowing not to put it in a fruit salad."

Miles Kington

Thank you all for your prayers.

Dan

And my God shall supply all your need according to His riches in glory by Christ Jesus.
- Philippians 4:19

DOT +24

Hello all...Dad here. Today was a pretty routine day for Patrick. A lot of the blog posts are beginning to sound repetitive because the daily routine is usually the same. If you've seen the movie Groundhog Day then you can relate. Even so it's a tough row to hoe. 

The labs today were identical to yesterday. No movement either way. The better outcome would be an increase in white blood cells but sometimes it can take longer than expected. If they don't increase on their own soon, the doctors will manually stimulate an increase. Every patient is different, so they say this is nothing to worry about.

After 3 hours of IV antibiotics and vitamin supplements we had Stamey's barbecue for lunch which I brought with me from Greensboro yesterday. We both love us some Stamey's.

The Panthers were mediocre at best today losing a sloppy game but the US won the Presidents Cup and the Hurricanes won, making it an okay sports day. Thanks for all of your interest, support, and especially prayers. Go Braves!

Dan

For with you is the fountain of life; in your light we see light.

- Psalm 36:9

DOT +23

Happy Saturday to all,

We intentionally didn't post last night with hopes of a two day trend since the white count moved to 0.3 yesterday, but it decided to drop back to 0.2. I have declared that we are officially on a roller coaster!  The white count doing this is not abnormal but the normal time to see it move is around day 14, and we are on day 23.  The doctors have tricks up their sleeve to boost the cells if needed.  Trust me, I am much more anxious about it than Patrick!  When the nurse came to tell us the counts, he looked me straight in the eye and told me not to get upset... thank you Patrick, once again you are my boulder!

He is doing as well as can be expected, he is pretty tired and takes a long nap almost every afternoon. The clinic days have been a little long but are easily handled since the staff is so warm and friendly.  I continue to be amazed with Patrick's positive attitude. Nothing seems to get him down except me encouraging him to take his daily walks!

Dan arrived this afternoon after taking a trip to the barber, see photo below. Patrick is looking forward to having him here as he is much better company for weekend sporting events!

Many people have asked what they can do.  First and foremost is pray for a gradual increase in the white count and that the cells are the donors, not Patrick's!  Also, receiving a "real" piece of mail is always very welcoming as life gets pretty boring going to the clinic and back to the apartment day in and day out, see address below.

As always, thank you for your support....stay tuned for roller coaster updates!  

xoxo caroline

Though the fig tree does not bud and there are no grapes on the vines, though the olive crop fails and the fields produce no food, though there are no sheep in the pen and no cattle in the stalls, yet I will rejoice in the Lord, I will be joyful in God my Savior. The Sovereign Lord is my strength; he makes my feet like the feet of a deer, he enables me to go on the heights.

- Habakkuk 3:17-19

Patrick Haley

2901 Bertland Ave.

Apt. 1223

Durham, NC 27705

Labs from today:

Test	Patrick	Normal Range
White Blood Cell Count	0.2	3.2-9.8 (this will go to zero)
Hemoglobin	9.2	13.7-17.3 (they try and keep it above 8.0)
Platelet Count	15	150-450 (they try and keep it above 10)

DOT +21

Patrick’s counts remained about the same today, the white count seems to be stuck at .02. Much better to stay the same than plummet to rock bottom, but we are ready for a slight increase!

We spent about 4 hours at the clinic, and Patrick received his antibiotics and potassium. After we arrived home, he fell asleep watching baseball (imagine that!) and is still snoozing away as I write. Today has not been his perkiest, but we know this is a part of the deal and tomorrow is another day. Like Mary mentioned in a blog post last week, take each day “bird by bird.”

We have yet to mention our upstairs neighbor whom we have named “big-foot.” He is such a heavy walker that he knocked the bathroom exhaust fan out of the ceiling! Now I think the office manager knows the conversation we had regarding this issue valid.

We are thankful for the arrival of two new family members, Ford and Hood Kolb… twin sons born to my sister Anne’s daughter and son-in-law, Holt and Gordo Kolb. The boys join their twin sisters, Clyde and Ellie! Welcome to the world Ford and Hood!

Pray for those white cells to increase and pray harder that they are donor cells, not Patrick’s!!!

xoxo. caroline

Humble yourselves, therefore, under God's mighty hand, that he may lift you up in due time. Cast all your anxiety on him because he cares for you.

- 1 Peter 5:6-7

Labs from today:

Test	Patrick	Normal Range
White Blood Cell Count	0.2	3.2-9.8 (this will go to zero)
Hemoglobin	9.5	13.7-17.3 (they try and keep it above 8.0)
Platelet Count	17	150-450 (they try and keep it above 10)

DOT +20

Hey everyone! Patrick’s labs remained the same today. His liver and kidneys are handling the antibiotics well which is good news because they can be hard on your body. He is doing well on walking every day. The doctors stress that walking gets the cells moving. Great incentive to get out there!!

We are taking each day and a time, slow and steady wins the race.

Thank you for keeping Patrick in your prayers.

Always giving thanks to God the Father for everything, in the name of our Lord Jesus Christ.

-         -  Ephesians 5:20

DOT +19

Quick post! Just wanted to show lab results.

Thanks for your prayers.

Labs from today:

Test	Patrick	Normal Range
White Blood Cell Count	0.2	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)

Splendor and majesty are before him; strength and joy in his dwelling place.

- 1 Chronicles 16:27