This week of chemotherapy started with some good news, Seth’s ANC number was up to 60. Doesn’t seem like much but we’re heading in the right direction for him to start feeling better. He also got his Vincristine chemotherapy and I also noticed he’s beginning to lose his hair. Saturday was the first day with no fevers which is also another huge win!! By Sunday his ANC was up to 1,400. His hemoglobin was low again and therefore he got a blood transfusion in the wee hours of the morning. Luckily Steve was able to come back into the hospital now too. While I always miss Seth when I’m home it is nice to get away, spend some time with Sadie, and recharge. The hospital days are long and we’ve been unable to leave the room due to being on precautions so it makes for some long days. Unfortunately, after leaving the hospital Steve let me know the nurse gave Seth his Zofran has a shot by mistake and not the GCSF. The doctors came in and said he should be fine. Zofran as a shot usually goes into the muscle where the GCSF usually goes into the fat so they would have to watch him over the next few days and he would skip a few doses of Zofran because it would take longer for his body to absorb. He did then get his GCSF shot.
Monday was a good day!! Seth’s fluid collection seemed to disappear overnight and we finally got to all be together as a family! It had been over 2 weeks since Sadie last got to see Seth so I was really excited to have everyone together. She took a little bit to warm up to being there but after a few laps around the floor and a fieldtrip to the cafeteria we had a great lunch as a family, the kids played together, and we just enjoyed being together.
When it was time to leave Sadie was upset that brother wasn’t coming home with us and her family wasn’t together. Breaks my heart to hear that but we explained that Seth might be home soon. The doctors had been telling me it could be Wednesday so we were hoping for a little time together at home since his Ommaya placement was penciled in for Monday.
Tuesday was a big day … stem cell collection. I thank God Steve was healthy enough to get back to the hospital for this because I don’t think there’s any way I would have make it through it!! They were transferred up to the ICU late Monday night so Seth could be more closely monitored due to the RSV and flu he had and was still having some side effects from. They were able to get 2 million cells but unfortunately they wanted 10 million. They wouldn’t try again on Wednesday as previously discussed. Dr. Wright explained they may have missed their window for a greater collection due to the holiday weekend. It still boggles my mind that in one of the leading children’s hospitals in the world things are only done at certain times … stem cell collections not on the weekends, flu swab testing only at 8am, CSF flow studies only on Thursdays or Fridays. At any rate they will try again after the next round of chemo and once he starts recovering again. We have to hope that they hit the scheduling just right and the best days don’t fall on the weekend!
Seth had another blood transfusion on Thursday because his hemoglobin was low. He also got his next flu shot (let’s hope we don’t have another positive flu) and he started taking bottles and eating food again not through the tube!!! It was looking like Seth was going to get to come home Friday. We were all so excited and Steve was looking forward to some time away from the hospital. Friday came and Dr. Goumnerova visited Seth because they were working on scheduling the Ommaya placement the following week. She said he looked great but she wanted an MRI before doing the placement and that unfortunately meant Seth would not be discharged because they don’t do sedated MRI’s on the weekends for outpatients. As a result he had to stay another night and have the MRI Saturday morning. Seth’s GCSF shots were also stopped in preparation for surgery next week.
Sadie and I went to dance class Saturday morning and then headed into Boston to pick up Steve and Seth! We did our laps around the floor, got cookies from Aubon (the café was closed), and waited for discharge. We did run into Dr. Wright in the hallway, she got to meet Sadie and told me that one of the tumors had shrunk half a centimeter. We’ll take it. With all the crap, obstacles, and friction we’ve had through all of this we’ll call that a win!! Dr. Wright said she would call us as soon as she heard about the surgery and thought it would be Tuesday.