One Day at a Time: The Long Weekend 2/17/12-2/19/12

Friday began with a 9am appointment with Dr. M at Overlook Hospital to check Sarah's white blood count, since it had been so low on Wednesday. This time we were prepared with drinks, snacks and no mascara! Sarah's eyes were finally feeling better, but she had been feverish on and off since Wednesday night. Once her port was accessed, the blood was drawn, and then we had to wait for the platelet count. Bad news, platelets low, Sarah needed a platelet transfusion. Good news, white blood counts coming up! The blood count information was sent over to Robert Wood Johnson Memorial Hospital, (RWJ) since that is where the stem cells will be harvested for the future stem cell transplant. The team at RWJ wanted us to get down to New Brunswick as soon as we were done at Overlook, so we ate lunch while Sarah was getting her transfusion, and by 1:30pm we were on our way. Thankfully Sarah slept for the hour long drive, because our day was far from being over. Once we arrived, Sarah needed yet another blood test, and as luck would have it, it could not be done through her port. After some hysterics and tears, the blood was drawn, and the waiting began; it would take about 1 & 1/2 hours to get the results that would tell us if the time was right for the stem cell harvest. We waited, and waited, and finally by 4:15pm the results were in, Sarah's counts were great, unfortunately this meant that she had to have another special Shiley Catheter placed in her neck that night, so the harvesting could take place on Saturday. More paperwork, more waiting, more tears!! Dr. S came in and discussed the importance of harvesting the stem cells while the count was so high, and then off we went to Nuclear medicine. I was allowed to go into the sterile "special procedures" room with Sarah, I had to wear a mask and hat, that at least got a smile out of her! I watched the whole procedure, held Sarah's hand, and did not faint. After the catheter was placed in her neck, an x-ray was taken to make sure it was in the correct place, after a slight adjustment and another x-ray, we were good to go!! By the time we got back to the prep area and Sarah got dressed and signed out, it was almost 7pm, what a long day!!!! Greg, Uncle Brad , Clayton and dinner were waiting for us at home. It was good to see Brad and Clayton who were spending the night at our house, on their way down to Maryland for a soccer tournament. After dinner it was off to bed, since the next day Sarah had to be back in New Brunswick by 8:30 am.

Saturday we were up at 6:30am, I gave Sarah her last Neupogen shot, breakfast, and a bag of snacks, and she and Zen left for RWJ. Sarah was upset that I did not go, but we were expecting more visitors that night, the laundry had taken over the house, and I am ashamed to say, I was just plain worn out from all the excitement of the week. When they arrived at RWJ there was of course more paperwork, and more waiting, Sarah called me several times to let me know what I was missing!! A large, noisy machine was hooked to the catheter in her neck; the blood was drawn out of one tube, separated into white blood cells, red blood cells and plasma. The red blood cells and plasma went right back in through the second tube in the catheter, the white blood cells were collected so the stem cells could be counted. This procedure went on for several hours, Sarah had to stay in the lounge chair hooked up to the machine until 1:30pm. She ate, watched TV, talked to her Dad, and checked up on me. When she was finally unhooked and released from the hospital, she was excited to head home to see Aunt Kathy, Uncle Sam, Sofi, Annie, and Sammy, who had just arrived from Syracuse, NY. Sammy's 3rd grade class had all made get-well cards for Sarah, we had fun reading them and looking at the fabulous art work! At about 8pm we got the call we were waiting for; the Doctor called to tell us the good news, they had harvested more than enough stem cells, Sarah was done!!!! Bad news, they wanted her back the next morning for a platelet transfusion and to remove the catheter. Sooooooo.....

Sunday morning up at 7am, drive to New Brunswick, more paperwork, more waiting, another blood test! Zen, Sarah and I were all stretched out in lounge chairs, watching TV, while she received her platelet transfusion. Then, you guessed it, a lot more waiting, more blood work and finally at 2pm the catheter was removed from Sarah's neck. YEAH, finally we could get home to see the cousins and get ready to go out for dinner. It has been a long, but very productive weekend, we are crossing our fingers that we will not see the inside of a hospital again until next Friday when Sarah gets another Rituxen treatment.
Time for dinner
M