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Day 4 (November 17)

The past couple of days, Grant has been throwing up and has diarrhea. We asked the nurse to have him tested and found out he has C. Diff or Clostridium Difficile.

Most of the BMT patients end up with this at some point and it happens when the good bacteria is killed with the antibiotics in addition to bad bacteria. You end up with too much bad bacteria in your colon. In someone that is immunosuppressive, like Grant, it can cause problems. Luckily we caught it early and he was put on another antibiotic for it. We also have to clean everything with bleach wipes as it can easily be spread with contact. The nurses all have to wear gowns and gloves when they come in to care for him. 

His counts are getting lower but still within an acceptable range so he has not needed a transfusion yet. He still continues to eat well and gets in his laps around the nurses station.

Tomorrow we start GCSF (Neupogen) shots. He had a nice little break from these as his last one was November 6th. His current dose is a lot less than he was getting previously and should only be needed to help boost his white cell count for now.

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Day 0 (November 13)

Transplant Day!! 

Today is the big day. We have been told it is pretty uneventful even though it is a day of great significance and one we have been waiting for for so long. 

The transplant started around 2:30 and we woke Grant up for the occasion 😳 The music therapist came in to play the guitar and a few extra nurses came in to sing a special transplant day song! After the physicians assistant took the syringe with the cord blood and pushed it into his line. The whole thing took a little less than 5 minutes. 

Like we had been told, the rest of the day was pretty uneventful. Thanks to the preservative used in the blood, Grant smelled like creamed corn for the rest of the day and into the next. 

Now we just have to wait for his cell counts to bottom out before the newly transplanted cells set up shop and start making healthy cells. It is a long process and there are many things that come along with a low cell count. Only time will tell how Grant’s body will react to this. 

Day -2 (November 11)

Yesterday was the first day with two chemos and he started the medication to help prevent graft vs host (Cyclosporine). The chemos were Fludarabine like the past three days and Thiotepa. Thiotepa is excreted through the skin so every 6 hours  we have to give him water only baths and change all bedding. We also have to change diapers at least every two hours. The Thiotepa can cause burns on the skin if not washed off. Because of this, his line cannot have its normal dressing and instead a piece of gauze and Kerlix wrap are the only thing protecting it. This has to continue until 2 PM Monday (48 hours) after receiving Thiotepa. 

The first bath was at 6 PM and lots of fun but the next two at midnight and 6 AM were under protest. He has been having trouble sleeping (go figure) so they prescribed him some melatonin and it worked like a charm. All in all a good day, he still ate well and played.

Today was another day of Fludarabine and Melphalan was added. The morning went well and he was done with chemo around noon! However just 45 minutes later, the five days of chemo finally caught up to him and he threw up.... and up... and up for the next few hours. Looking back we should have known something was wrong when he didn’t finish his donut at breakfast 🤔 Luckily once we found the right combination of anti nausea medication he was back to his old self. We laughed, danced, and he even got in his laps around the nurses station! 

Looking forward to tomorrow’s day of rest and Tuesday’s transplant!!

Day -6 ( November 7)

Only 6 more days til transplant!

Today we loaded up both SUVs full of essentials, the boys and ourselves for our 6-8 week stay at Egleston. We had to be at the hospital in the morning for surgery to place his central line. He will get all medications and blood draws through this line. He also had a bronchoscopy to look at his lungs. They send a camera with a light down into his lungs and also wash out inflamed areas. 

The surgery went well and we were reunited in his BMT (Bone Marrow Transplant) room around 2:30. He was finally able to eat and drink and did both eagerly. Shortly after, he took a long nap! 

His has one chemo today that is scheduled to start at around 9 PM. This will continue for the next two days. 

Day -21 (October 23)

Grant went in on October 23 for the first round of Campath, a medicine designed to kill off white blood cells to prepare him for transplant. The medication was started at 10 PM and was to run for two hours. After an hour he had a mild reaction; he spiked a fever and was shaking which was scary! The nurses were able to give him some medication to minimize the side effects. 

The following days in the hospital were happily uneventful. The only other reaction was a small rash. By the end of the stay, he was wearing his mask! This is the only way he gets to leave the room though he can only stay in the unit. 

Grant was discharged on October 27 with several new medications to take at home for the next week and a half.