Aug 31: ?We had another line break with Blina and turned out the port got infected with E. coli and Salmonella.? After weeks of antibiotics and other treatments his port was removed and recovered fully. One afternoon, we asked if we could go to the courtyard to get some sun and see some family. After a week, they put in his third port.
Aug 11: Restarting Blina so in the hospital for several days
Aug 8: Reid got his port replaced and we will take a week break from his infusion.
Jul 27: Reid’s first port had increasing trouble drawing blood over the past several months and also we noticed the tube coming out of the top was more visible under his skin. We got an X-ray and saw a kink in the tubing and a couple days later it broke open. We again were in the hospital and just finished up the Blina.
Jul 11: We got Reid all setup with his infusion and a backpack. After spending a rough week in the hospital and some problems, it’s really nice to be home while still getting treatment. This Blina drug has only been used for relapse patients but because of his liver issue, he is able to get it. It’s suppose to work extremely well and are testing it now for use in standard treatment. Thanks for all the thoughts and prayers and Reid will get through this thing!
Jul 8: For the 24hour Blina in fusion we tried a few backpacks to make it as comfortable as possible.
Jul 6: Right out of the gate there was bleeding around his port so went back to the hospital. If he is not getting the infusion for more than 4 hours we would need to spend 4 days being monitored to make sure there aren’t any reactions.
Jul 3: Came home from a week in the hospital being monitored when starting the Blina. Our air mattress situation has been an on going problem…
Jun 25: In for a LP with chemo and bone marrow asperation that turned out normal. Will be starting Blina soon and will have to change the needle every week during it.
Jun 16: Reid is home and doing really well! We will start him on a drug called Blinatumomab. It is a continuous infusion, and he will have it for 2 months with a week break in between. It does not have as many side effects as chemo and would allow his liver to keep healing from the liver damage (VOD) while still fighting leukemia cells that may be hanging around. Reid is still in remission, which means there’s no detectable leukemia cells but it could relapse so we have to keep treating for 2 years after this infusion.
May 30: Reid had an enlarged abdomen that was getting worse after we talked to his doctors so we went to the ED. Turns out the chemo med he took the week before caused damage to his liver. This blocked blood flow and pushed fluid into his belly. It was scary but he should recover fully.
Mar 19: Reid’s last hospital stay went quick as they got us out late into the night. Probably to help open up beds and to clear out for COVID-19. We are so thankful for the people that are caring for him and for his treatment.
Mar 5: We are coming up to the last hospital admission he’ll need for chemo. Things are going very well and thank you all for your thoughts and prayers!
2020 Jan 22: Today the “plan” was to begin the Interim Maintenance phase. His ANC (Absolute Neutrophil Count) had to be 750 for him to be “ready enough” to begin. The drugs are administered over a longer period and require an inpatient stay of about 4 days. This will happen roughly every other week during this phase. Last week his ANC was low at 140 and today it is 330. Delays are not uncommon; they will try again next week!
2019 Dec 23: On Friday, Reid was playing in the living room for an hour when he suddenly starting losing his balance and couldn’t push himself up. His right arm and leg were almost completely limp so we headed to the hospital immediately around 10am. Within 30 minutes he had regained almost all of his movement and was doing well. We got an MRI of the head area and the doctors could not find anything and think it was from the toxic chemo drug.
2019 Dec 5: Kat made a great spread for Thanksgiving! We had a couple calls about scratches and blood in his nose to the hospital but nothing serious so we’ve been at home. Reid is in remission and has been getting the more intense chemo several times a week. He’s been very active and doing fantastic! Kathleen’s parents have come down several times and help out tremendously.
2019 Nov 14: We got to go home yesterday after being in the hospital for over a week. They could not figure out what the fever was from, although they did find and indication of a viral infection. His ANC levels were zero for a while but over the last few days it went up a lot so we can go home.
2019 Nov 6: Reid goes to the clinic on Friday’s for his infusions. It’s takes a few hours to access the port on his chest and administer the chemo. On Monday, he went in for labs and later that day got a fever of 100.7 so we called in to take him to the ER. They saw him quickly, got antibiotics going, and was admitted. We’ll be here for a several days to make sure he doesn’t get sick.
2019 Oct 28: Chemo is going well, however, they did find abnormal cells in the spinal fluid so he will need more chemo there. On Friday, we were cleared to go home. His immune system is weak so we are doing the best we can to keep him from getting sick.
2019 Oct 22: On Wednesday, Kathleen took Reid to the pediatrician because she saw petechiae on his calf. He also had a lot bruising and overly tired the last 2-3 weeks. His blood counts were very worrying so we went to the hospital. His platelets and white blood cells were indicative of Leukemia so they gave him fluids and prepared for chemotherapy. On Thursday, they confirmed acute lymphoblastic leukemia (ALL) and he will have to go through a 3 year plan of chemo. This will suppress his immune system so we will have to take precautions to reduce his chances of getting an infection. The following day, they gave him the first round of chemotherapy and he took it well. Our family and friends have been so gracious helping us with this and we want to thank everyone for your support!
