He Made It

Wow, Dave made it through the 8 sessions of total body irradiation without having to be admitted to the hospital! What a relief that is. We did have to get a taxi at midnight last night and go to the Univ. of Washington Hospital because Dave developed a fever of 101.1. We were instructed that any fever over 100.9 he needed to be seen. Everything checked out okay and they feel the fever was a result of parotiditis (swelling of the parotid glands in the neck). This is a common side-effect to the drug parafermin. We were relieved that he didn't have an infection. We got home about 1:30 a.m., hooked him back up to fluids, and got up at 6 to go back to the hospital for his TBI. Needless to say after a full day, we are pretty tired, but doing good. Dave was sick again this morning after his first TBI, but doing better this afternoon. He was actually hungry this evening so I fixed him a steak and corn on the cob! He couldn't eat all of it, but he ate a lot, which made me feel better. He's now in bed watching some t.v. and getting psyched up for his chemotherapy tomorrow. Thanks for those prayers, I know they are working!

Rough Start, Better Finish

Dave's first TBI session this morning just wasn't quite how we wanted it to go as he got sick during the radiation and had to take a few breaks. As soon as we got back to the hotel we hooked him up to the hydration pump and he slept for about an hour and a half before we headed back to the clinic for lab and visit with our team. He's lost about 2 lbs., but that is expected. His next TBI was at 5 p.m. and he felt much better through that, just a little weak. We got back to the hotel at around 7 p.m. and put the pump back on - Dave is now sound asleep, and now it's my turn. Thanks for your prayers, we are getting through this rut in the road!

Tough Night & Day

We didn't sleep well last night as we were so concerned we wouldn't hear the infusion pump beep letting us know that the bag of saline was empty. Finally at 1 a.m. we were able to unhook it. Dave was exhausted from the radiation and fell into a deep sleep. I tossed and turned until about 4, then slept until 9. The TBI really took its toll on Dave today. Not only was he exhausted after the morning session, it made him sick to his stomach. We then had a clinic visit which revealed he was dehydrated because of the vomiting, so we now have him on 2 liters of fluid instead of one. That will run most of the night. After his second radiation session he's really worn out, but not sick to his stomach. He actually ate a decent meal and is now in bed trying to sleep.

Day One of TBI

Wow, what a day! Dave got through both sessions of TBI today without any problems, just a little worn out. He was still able to eat a decent meal and is continuing to drink a lot of fluids. I must admit that I was a little "stressed" about the hydration pump we had to use this evening, but with the help of some experienced friends (Becky & Yates) from room 434 we were able to get everything hooked up and going! They actually hooked Yates up and walked us through it. I feel much more comfortable now and have more confidence to tackle it tomorrow evening. I have a little trouble hooking up the IV bag and syringes because of the arthritis in my fingers, but Dave helps with that. It is definitely a "team" undertaking. The hydration pump is necessary every evening after TBI, and probably at different times to maintain good hydration and/or meds. The weather has been hot, and having the hotel and SCCA shuttle service has been a blessing!

Day of Review and Teaching

Today was the last day of Dave's palifermin, so that is behind us for now. He will receive that drug again after his TBI and chemotherapy. It's been a busy day with lab at 8:45, PT (physical therapy) at 9, infusion of palifermin at 11, chemo teaching 2 p.m., & CADD Prizm VIP pump class at 3 p.m. (Dave didn't attend the pump class, but I did). The pump will be used to infuse hydration and/or medication. Hydration will be administered each day of TBI (total body irridation) through Dave's Hickman catheter (port in his chest). He will be on the pump for approx. 10 hrs. each time. This is done here at the hotel, and I will be the one in charge of giving him his hydration! Talk about trust!! We will be fine as long as he doesn't try to tell me how to do it!!! Once a "chief" always a "chief"! I also will take charge of all his meds, which consist of 15 different meds on a scheduled basis, and 9 different meds on a PRN (as needed) basis. That is going to be a challenge in itself. Tomorrow we will walk to the SCCA to catch the shuttle at 11:15 a.m. to the Univ. of WA Hospital, TBI is at noon and should take approx. 30 min. We will then catch the shuttle back to SCCA for an appointment with the pharmacist and lab draw at 1:15. Our next appointment is at 2 p.m. meeting with our "team". We the have a break until another walk up to SCCA, catch the shuttle to the hospital for 2nd TBI at 6 p.m. followed by a shuttle ride back to SCCA and walk back to our hotel where I will administer his hydration. If Dave doesn't feel well, the hotel shuttle will come and pick us up. This goes on for the next 4 days with a few changes in the schedule. I apologize if this is boring, but it sure helps me sort out the day by recording it. Dave came back from physical therapy today with positive news; his neuropathy is getting better in his feet!!! His movement is improved and his numbness is less. It's nice getting positive results!

Doing Good

2nd day of palifermin, and Dave is starting to feel the effects; sensation of thickening of the tongue, and his taste buds aren't working full force. He still is eating well though, and is trying to heighten his taste with hot sauce!! I swear his mustache grew back overnight, although, he will lose it again after the next two doses of chemo. Just one more day of palifermin, and then he will start his 4 days of TBI (total body irradiation). He will have two sessions a day, each running about 30 min. apiece. We will be walking back and forth to the SCCA for treatments. If he gets too tired though, we are able to take the hotel shuttle. What a nice convenience for us thanks to everyone's generosity. These next two weeks will be busy and challenging, but we will get through it with the help of your prayers. Thank you!

Today, Dave received his first of four doses of palifermin. This medication is used to thicken the lining of the mouth to decrease the incidence of oral mucositis (mouth sores). He will receive this for the next 3 days through his Hickman (port). It only takes about 10 min. after he gets his lab drawn. Ralph Swanson came and picked us up last evening and took us to his and Kathy's home where Kathy BBQ'd burgers! Boy, did that taste good, and the company was great! We have really missed being able to grill. It's been a very relaxing day and we just got back from taking Ripley on a walk. The weather is nice, in the high 70's today, but is predicted to be getting hotter starting tomorrow. I understand that it never does get real hot here and, so far, has been very comfortable.

Clarification

I'm afraid there might be some confusion as to my explanation of the 2nd transplant and insurance denial. I apologize if I didn't make this clear. I'll try to explain. The 2nd transplant is actually a precautionary step just in case of the possible development of leukemia IN THE FUTURE. Dave does not have leukemia but chemotherapy drugs can cause a development of MDS, a form of leukemia. This does not necessarily mean that Dave will develop leukemia; it is just a possibility. If a 2nd transplant is necessary, our insurance will most likely cover it at that time. BC/BS has been the best in coverage for the entire process and we are very thankful to the city for that excellent insurance benefit. Always feel free to ask questions, you know me - I love the challenge!

Things are on schedule

Looks like we start tomorrow with a 10 a.m. scheduled meeting with transplant nurse to go over some details regarding protocol. Weekends really don't mean days off here, but that is a good thing. It's hard though knowing what day of the week it is, as they all seem to run together! Dave and I never know the date; Dave blames it on chemo brain, but I don't really have an excuse! I could try "fatigue"! We hope everyone enjoys their weekend!

Insurance Denial

We met with Dr. Holmberg at 6 p.m., and received the news that our insurance will not approve the 2nd transplant, so we are back to step 1. Starting on July 11th, Dave will begin TBI (total body irradiation) for four days, a day of rest, then admit to the Univ. of WA for 2 days of chemotherapy. After 24 hrs. his stem cells will be transplanted, a process they consider a "re-birth". This can be quite a celebration. Depending on how Dave responds, he could be home (meaning hotel) after 3 days or can be in the hospital until any problems are resolved. One of the biggest concerns is mucositis (sores in the mouth, esophagus, intestines). This is controlled with pain meds and tube feedings, which we hope doesn't happen, but we are prepared just in case. Thirty days after transplant Dave will undergo another CT scan to see if there is any sign of remaining cancer. If there is, Dave will undergo radiation for another 3 wks or so. We had a nice July 4th with Dave's brother, Mark and his wife, Susan, watching some spectacular fireworks over Lake Union! Today was spent enjoying some Seattle sightseeing and some good fish and chips. Please keep the prayers coming as this is really a stressful time - we really miss everyone and can't wait to get home and see everyone!