Closing this chapter.....

I hate that I have been remiss with the blog but I am elated to report that Patrick is remarkably better!  He had an appointment at Duke on Thursday and his numbers and chest X-ray continue to improve with each visit. 

It was a very long 3 months as the infection in Patrick’s lung ended up being a very rare fungal infection which was treated with a 10 week course of IV antibiotics.  The good news about the IV was it could be administered at home by family, but the bad news was the medication was very taxing on his body, which turned into numerous visits to the clinic for electrolyte infusions.     

Patrick has decided that he wants to move forward with college, therefore he is not going to pursue the second transplant until later down the road.  The first transplant created more surprises than we ever imagined and Patrick more than deserves to get back to normalcy.  His disease allows him the option to wait unless he starts to develop infections.   The medical team at Duke is supportive of his decision and know that he will pursue the second transplant immediately if the need arises.   We pray that his daily antibiotics will keep any new infections at bay.

Patrick will attend UNC on a part time basis this fall and plans to return to Ole Miss as a full time student in January.   In the meantime, he is having fun catching up with friends and is enjoying some adult beverages which he had to forgo on his 21^st birthday!   

This is going to be the last post on “Patrick’s Oil Change” as we are closing this chapter in our lives.  I will close by repeating how very proud I am of Patrick.  My only regret is that he does not have a new set of cells to brag about but know that this is only temporary.  Thanks be to God.   xoxo

We rejoice in our suffering, knowing that suffering produces endurance, and endurance produces character, and character produces hope. 

 -Romans 5:3-4

 

 Be joyful in hope, patient in affliction, faithful in prayer

 -Romans 12:12

 

The docs are scratching their heads...

We are still trying to get to the root of the problem with Patrick's lung which has lots of docs scratching their heads! 

A week ago Tuesday, Patrick had a bronchoscopy.  During the procedure, the doctor obtained small samples for biopsies and cultures, and discovered that the mass is blocking airways.  After this procedure, a rigid bronchoscopy was ordered with hopes to clear the airways and remove most of the mass. This procedure was done today.  The doctors were able to clear one of the airways and remove some of the mass.  While they were unable to remove most of the mass, they were able to obtain lots of "stuff" for biopsies and cultures.  This makes for happy pathologists....they now have lots to slice and dice with.

We now wait for the results and our next plan which we hope to have by the end of next week.  In the meantime, Patrick will spend the weekend enjoying the Masters!   Keep up the prayers and positive thoughts.    xoxo

Patience is a virtue

Patrick continues to feel better and he tolerated the very strong antibiotic for his sinus infection very well.  He has gained 10 of the 25 pounds lost while battling his cold and sinus infection and is anxious to move toward the second journey.

We moved furniture into our Durham apartment last week and were ready for take off on Friday when a mechanical failure was discovered through a routine chest X-ray.  The X-ray showed a new spot on Patrick's left lung which turned out to be pneumonia.  Needless to say, all has been put on hold for the time being.  This infection occurring, although is a huge bump in the road, is not a complete surprise as Patrick's immune system is still very compromised from the first round of chemotherapy.  How fortunate we are that the spot showed up on the X-ray, and we did not move forward with chemotherapy as that could create quite a challenge.

We now continue the waiting game and the old Proverbs "Rome was not built in a day" and "Patience is a virtue" run through our minds frequently.  There is, however, something positive.  We have a plan to get to the bottom of this pneumonia. The plan is to see an infectious disease doctor next Wednesday and for Patrick to have a bronchoscopy (lung biopsy) early next week.  Hopefully, with the great minds of the infectious disease doctors and the biopsy, we will learn what type of infection this is and treat it so he can start his regimine.  In the meantime, Patrick is taking antibiotics to cover all types of pneumonia, but it will be a relief to know exactly what type of infection it is. 

Once the dust settles, we will move towards the second journey which begins with having his catheter placed.  Once the catheter is in place, he can begin his 5 days of chemotherapy and one full body dose of radiation. He will next have the new donor cell infusion and then start 60-90 days of supportive care in the outpatient clinic.

This transplant is a little different than the first, which will hopefully make the outcome different!
Dr. Chao has ordered one full body dose of radiation along with more chemotherapy.  These additions should enable Patrick's immune system to become more suppressed, making the donor cells feel more welcomed and want to make Patrick's body their permanent home! 

This is all we have to report for now.  We will be back in touch when we know something....hopefully be sooner rather than later!  Thank you for your prayers and positive thoughts.    xoxoxo caroline


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

"I have told you these things, so that in me you may have peace.  In this world you will have trouble.  But take heart!  I have overcome the world."
-John 16:33

Surgery cancelled!

As it turns out, having the splenectomy postponed ended up being a good thing because Dr. Chao has cancelled the surgery!  Having the surgery cancelled eases our mind about the timing of the next transplant which is on the calendar for the end of March. 

There are various reasons behind cancelling the surgery.  These include a nice increase in Patrick's platelet count (161,000) and the size of the spleen. The increase in platelet count indicates that the spleen is probably not housing the platelets which we feared.  A CT scan earlier this week showed the spleen is still around the same size it was a couple of months ago which is very good news. The size of the spleen, which is enlarged but not huge, has always had Dr. Chao sitting on the fence regarding surgery.  

This has been a very tough week for Patrick. He is battling a terrible sinus infection along with the respiratory virus called RSV which he contracted due to his weakened immune system. He is tired and has a miniscule appetite which I wish he could pass on to me! 

We go to Duke Monday to have required pre-testing for transplant clearing and learn more about the schedule.  We also have an appointment with an ENT to look further into the sinuses. It will be a full day at Duke! 

We are ready for March to blow on by so we can get this show on the road.  I will be back in touch after our appointments on Monday.   Thank you for keeping Patrick in your prayers.   xoxo caroline 

Be anxious for nothing, but in everything by prayer and supplication, with thanksgiving, let your requests be made known to God.
-Philippians 4:6

Surgery postponed

A quick update..... 
Patrick's splenectomy has been postponed until next Tuesday, February 25th due to Patrick battling a terrible head cold and cough.  All fingers and toes are crossed that he is healthy enough to have surgery Tuesday as we are starting to feel as though we are running in place!  We are ready to have the surgery behind us so we can move on to bigger and better things like new cells!  I will post another update Tuesday.  Thank you for keeping Patrick in your prayers.   xoxoxo

Wait for the Lord; be strong and take heart and wait for the Lord.
-Psalm 27:14

The plot thickens!

It is hard to believe that the first month of 2014 is almost behind us!  The highlight of our month has been the birth of Robert "Mills" Blackwell, son of my nephew Burns and his wife Laura.  Mills was born in Greensboro on January 18th and weighed 6.9 ounces.  Burns is our inspiration as he has endured 2 bone marrow transplants!

Much has transpired with Patrick over the past several weeks.  We learned that Patrick's spleen is enlarged and needs to be removed prior to his second journey.  The enlarged spleen can be an indicator that it is hovering cells which may interfere with the next transplant.  We met with the surgeon last week and the surgery is on the calendar for February 21st.  We anticipate the surgery to be performed laparoscopically and he will spend a couple of nights in the hospital.

About a month after surgery, when Patrick is fully recovered, the second journey will begin.  He will have chemotherapy and radiation prior to receiving donor cells.  Radiation was not used in the first transplant.  The doctor is adding radiation to supplement wiping out his immune system which should make the donor cells happier! 

A perfect donor has been located and is on go as soon as he gets the word!  How lucky we are to have another willing donor. 

Patrick continues his awesome attitude which makes the hiccups bearable.  I love his "get on with the program" attitude and I am one proud mom!  God bless you Patrick, I love you dearly.

Stay tuned for updates as they arise and keep the prayers flowing!   xoxo  caroline

"Be strong and courageous.  Do not be afraid or terrified because of them, for the Lord your God goes with you; he will never leave you nor forsake you."
-Deuteronomy 31:16

Back to square one

We received the results from the “whose is whose” test earlier this week and learned that the donor cells have plummeted to 2%.  This decline constitutes a total loss of graft which means we have to start back at square one.  Although this news is devastating, Patrick handled it really well and is ready to start round two which will hopefully be in January.

The team at the clinic is working hard to pin down a new donor and happily reports that Patrick has an abundance of perfect matches.  We head to the clinic Monday and will have an update on the findings. 

Patrick is enjoying spending time with friends who are home for the holidays and the timing of their being home could not be more perfect!  He is so happy to see everybody!

I will post another update after our visit to the clinic on Monday.   Thank you for keeping Patrick in your prayers.   xoxo

Then Jesus said, “Did I not tell you that if you believed, you would see the glory of God?”
—John 11:40

DOT +87

We all had a very nice Thanksgiving at home.  Due to lots of sniffles in the extended family, we opted to cook our own turkey at home to keep the germs away from Patrick’s weakened immune system as even a slight cold could mean serious business!

Patrick returned to the clinic Monday for lab work and got fantastic results!  His white count was 4.6, hemoglobin 9.7 and platelets 103.  We are thrilled to see the numbers increasing steadily along with his energy level.

We are still waiting for results on the “whose is whose” test.  Due to a hiccup in Duke’s new computer system, the test was not run a couple of weeks ago but was run this week.  Results should be back early next week and we anticipate them to be positive. 

Patrick is still enjoying being at home although he really misses college life.  He will take an online course in January and attend summer school to catch up on his hours. 

We head back to the clinic to see Dr. Chao on December 16^th!   Stay tuned for results on “whose is whose” test. xoxo caroline

The Lord will guide you always; He will satisfy your needs in a sun-scorched land and will strengthen your frame. You will be like a well-watered garden, like a spring whose waters never fail. 

-Isaiah 58:11

DOT +73

Patrick’s visit to see Dr. Chao Monday could not have been any better!  His counts continue to rise on their own with his white count 2.8, hemoglobin 8.9 and platelets a whopping 84!  With these counts, he will be able to return for labs in 2 weeks and return to see Dr. Chao in one month. The counts were not the only exciting part of the visit, he also had his port removed! 

Life is starting to feel more back to normal everyday. As Patrick is starting to regain more and more strength (and hair!).  He also has permission to venture out to public places as long as he goes during off hours to avoid crowds which hover germs and can lead to problems. 

Even though things are going so smoothly, Patrick still needs to be very aware of his surroundings and continue to obsess over hand washing. It will be around nine months or so before his white cells are completely back to normal.  The body has multiple types of cells with some types recovering slower than others. 

I will post again after we learn the results of the latest “whose is whose” test which should be early next week!

xoxo caroline

Give thanks to the Lord, for he is good; his love endures forever.

- Psalm 118:1

DOT +65

Hello friends!

Patrick's labs on Thursday were high enough to let him come home and he was even able to drive himself!!  White count 2.4, hemoglobin 8.2, and platelets win the prize at 64!! Home sweet home has never felt better. 

I cannot express how it feels to be at this place of the journey. Being home is going to boost Patrick's spirits which should help improve his counts!

We return to the clinic on Monday and if numbers look good, they will remove his port. God is good and God bless Patrick!

xoxo caroline

May the God of your hope so fill you with all the joy and peace in believing that by the power of the Holy Spirit you may abound and be overflowing with hope.

- Romans 15:13

DOT +61

I was so excited to report the news that we may be coming home on yesterday’s post, I forgot to include Patrick’s counts! 

White count was 2.1 which was a slight increase from Saturday’s count (1.8)…..Hemoglobin is holding its  own at 8.1 and platelets were the winner at 46!  Hemoglobin barely made it as they transfuse at 8.0! 

Discharge class was fun today.  It was interesting to hear all the ins and outs about heading home….we just hope to experience it in a few days but are keeping a very open mind and counting our blessings that we have made it to this point.

Tomorrow is a day off from clinic so next post will be after clinic on Thursday!  Thank you for sharing this journey with us.  

xoxo caroline

"The Lord is my strength and my song; he has become my salvation. He is my God, and I will praise him, my father's God, and I will exalt him."

-Exodus 15:2

DOT +60

Dear Friends,

Words cannot express how much we appreciate your support over the past couple of months. The gifts, food, visits, cards, prayers, calls, emails, and texts have meant so much to us!! This journey has been a challenge and having your support has kept us above water. Thank you so much!

We received news today that we could be headed home as soon as Thursday! Patrick's counts are rising steadily and since he has no other issues, they feel comfortable with us going home and coming to the clinic on a weekly basis. We are not packing the car yet as things can change at the blink of an eye!

We will attend a discharge (aka: "get out of jail") class tomorrow. Then wait until Thursday to go back to the clinic. If all labs are good Thursday, all systems are go!!

Patrick will continue to recuperate at my house with Dan and I rotating staying with him. We anticipate several weeks before he has fully recuperated.

Thank you again for your love and support! God is so good!

xoxo caroline

So I say to you: Ask and it will be given to you; seek and you will find; knock and the door will be opened to you. For everyone who asks receives; he who seeks finds; and to him who knocks, the door will be opened.

- Luke 11:9-10

DOT +57

Happy Saturday,

A HUGE thank you to Pat for spending the night with Patrick last night so I could attend a dinner with John in Chapel Hill.  Dan is in Virginia for the weekend with Mary.    

Patrick’s white count rose from 1.3 yesterday to 1.8 today without any help from Neupogen shots.  His last shot was Sunday, so having the white count rise on its own is truly a blessing!  All other counts are remaining steady which is so very encouraging.  God is good!

Patrick and I spent the afternoon watching football and we were happy to see both the Tarheels and Rebels pull off victories!  Tonight will be another sports filled night with hockey, football and basketball. 

We hear rumors that the docs are discussing possibly letting us go home in the not too distant future!  This is music to our ears, but we know that things can change on a dime, so we are not packing our bags yet.   We are ecstatic that they are approaching the subject! As patient as Patrick has been through this process, he is bored to tears and ready to be home!  We hope to hear more details on Monday.  Stay tuned!  

xoxo caroline

Taste and see that the Lord is good; blessed is the man who takes refuge in him.

-Psalm 34:8 

DOT +52

Patrick’s white count jumped to 6.6 today after being 1.5 yesterday and receiving Neupogen shot.  All other levels were also in normal range which earned him the day off from clinic tomorrow!

Patrick had visits from Jack Taylor, his mom Susan, and William Trentini yesterday.  What a treat it was to see familiar faces his age!  Thank you for making the trip to see us! 

Despite the frustration with the white count, we are so very fortunate that things are going smoothly thus far.  Many of these patients would have endured infections and other complications by this point.  We count our blessings daily and pray that this pattern continues!

Gracias for the love and support!

xoxo caroline 

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

- Psalm 29:11

DOT +50

We made it to day FIVE-O…..come on white count, quit being so slow!

We had a quick trip to the clinic this morning and Patrick enjoyed watching football this afternoon with Dan.

Everything is going very well with the only current hiccup being the white count. It was8.8 Thursday (after Neupogen) and 3.2 Friday and 2.3 today. The docs opted to forgo the Neupogen today with hopes of the count rising by itself!  Platelets were 29 today and hemoglobin 8.4. Patrick has not had any platelets or blood supplements in several days. Having these increase singly is very encouraging, perhaps they are being greedy? Ha!

We head back to the clinic tomorrow to check the white count. All fingers and toes crossed! Thank you for your continued love and support.

xoxo caroline

May the God of hope fill you with all joy and peace as you trust in him, so that you may overflow with hope by the power of the Holy Spirit.

Romans 15:13

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