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