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