It's Friday. TGIF. I was relieved to have gone into work today and not see patients. This week has been interesting. With the start of Sunday came of course the unthinkable. The plans I had to finish up the mess I created took longer than I expected. The house was in disarray and we had chemo this week. There is nothing worse than to come back to a messy house. Its inevitable that when we get home we are unpacking the car of our dirty clothes and what if items. I would rather be overly prepared than unprepared. Getting back to Sunday....the plan was to clean, organize, bake cookies, and then make a card for David from Jasmine. Well, that all changed as David was getting ready to leave for work. When he hopped out of the shower and flushed the toilet, the toilet wouldn't stop running. Apparently the ball had disconnected from the rod. I'm not a plumber but I was going to have to figure out what I needed. We have a well and I was not about to run it dry with this scenario. I broke out the complete do it yourself book I have. I looked up toilet parts and guessed what I needed. I told David to look up on the Lowe's site what parts they carried. I in the meantime was trying to figure out what I could wedge underneath the deteriorated rod to keep it from running. Ah yes, the rubber carmax key chain sitting in the miscellaneous bowl. Not enough leverage...2 pieces of a wooden skewer. Done. Well my attempt worked but I didn't know if it would hold up by the time I got back from Lowe's.
After buying a couple of parts and a new fill valve. I tried the cheaper parts first while Jasmine started on her movie. I hoped that I would not have to be more involved in the project than those small parts. Thankfully with a new rod and ball, we were back in business. It would have sucked if it became a bigger project than I could handle. Not only was this our only bathroom but it was Sunday. The plumber we used last time left us a hefty bill but once again bad timing and definitely a must fix. No running water can be a problem. With that unexpected job done, I trudged on with the cleaning. By the end of the evening we were making cookies for Valentines day. I cheated a bit with the crafting for David's card. I let her pick out the shiny puffs to stick to our glitter glue and I pasted them on. Its the thought that counts, right? I had opened a bottle of wine for myself and we danced away earlier so it didn't take much for Jasmine to get tired. I set her with her bedtime movie and set out a plate of heart shaped frosted cookies for David. I placed his card next to it and started to wrap up the evening.
Monday was the same old, just work. I had already packed up most of our stuff the night before and planned to come home to already made dinner. We would have to be up early and I wanted to be well rested. I didn't get to bed as early as liked because we were arguing over what time we should leave. As usual, we came to a decision of early and nothing more specific than that. I set the alarm for 4:30am.
Tuesday morning was more like 4:45 and then some. I was tired and we had to get out the door. David had some last minute packing as usual. Still undecided on what to bring to entertain himself. I could care less since I asked him 2 days earlier to pack or know what he was taking. I no longer wanted to be responsible for those kind of details. To each his own. I brought my nook for me and Jasmine's hospital toy bag. I got the car started and packed it with juices and tried to figure out what we would need to bring for food. We were trying to conserve cash and eating expenses at the hospital. It's like eating out at Panera or Chipolte but not getting anything better than 7 eleven food. We knew there was going to be a good chance we would be staying at the Ronald McDonald house which had moved. We didn't think we would have enough to get delivery or want to walk in the dark on unfamiliar streets. So I opted to taking some cup a noodle and some bread in a Ziploc with a jar of peanut butter. Its all good. Jasmine had a case of capri suns and we had our tumbler cups for water. Dinner taken care off.
By the time we got down the HOV up 395, we heard about the fire at the Reagan building. We knew there would be traffic but hoped it would not have us detour our normal route. I was not prepared for that. I should be but I just needed to get there the easiest way possible. We were going to be late for our appointment. Everyone was going the same way we were and it made it worse. I tried to be smart with my defensive driving but we were not getting there any quicker. After dealing with half of all the commuters of 395 going our way, we got to the hospital 15 min after our appointment. Not too bad but we were not through the day yet. Jasmine's GFR (kidney check with dye) consists of 4 visits in a matter of 2 hours. They inject the first visit and we return one hour later for a blood draw. The last two times are blood draws a half hour apart. Well for the life of me I couldn't remember what the time we had wait after injection but I remember the number of visits were 3 in total. The tech told us "132". David and I asked what it was again and the tech said "1:30 and 2". I looked at the time on the clock before we left, it was 12:00pm. We hung out in the cafeteria where Jasmine fell asleep while we tried to grab lunch. I was sure something was off but didn't know what. I was trying to stay awake myself holding Jasmine but it was getting difficult. Jasmine's oncologist found us in the cafeteria and asked us when we had to be back. David told her and she said we should go up to hem/onco clinc to get her labs drawn as a base line. We went up and did that along with her examination. By the time we were done it was time to head back down to radiology for her blood draw. When we arrived the tech said, we missed the first one. David was mad and I was annoyed. I went in with Jasmine and got her blood drawn. He told us to come back at 2 and 2:30 now. We hung out at the cafeteria again agitated from the miscommunication. This process would inevitable start her chemo much later. We had an appt at 9:30 and didn't get seen until 11:30. When 2:30 came we went up to clinic to get checked in. I took Jasmine to the art room while we waited for the final go from her doctor. She played and her doctor found me to let me know what her counts were. She found David in the waiting room and told him to get Jasmine admitted at admissions. I texted him to let me know when he was done and I would walk over to our room number. We met at the room and David handed over the admission papers to the floor nurse. Unfortunately we had a room but no bed yet. The nurse was trying to work out those details and get Jasmine's fluids together. She set Jasmine up for pre hydration fluids which runs 2 hours. Unfortunately until her ph was to standard we were not starting chemo. The only way we would be able to tell that is if she pees. Guess what wasn't happening? Jasmine didn't pee until 7:30. Now we could get started with anti-nausea meds and then a half our later chemo. Yes chemo started at 8:15pm. After they pushed some of the drugs through her IV, we had to start the heaviest one. It runs for 3 hours.
This is where it gets interesting. I usually watch and wait until all the chemo has been administered and finished. The nurse came in at about a little over an hour into it. She came in with her eyes red and watered. She said she was sorry but she had given her the last one running in half the time it normally ran. I didn't know what to say or do. I didn't want to freak out but her obvious distress told me it had taken a lot for her to walk through the door and tell me this. It also told me this was serious. She told me that they would infuse the rest at the regular rate and up the time and amount of her counteracting meds for this chemo drug. I knew this drug affected the kidneys and heart rate. I realized there was nothing I could do but accept what measures they were going to take to rectify the problem and pray. I was uneasy the rest of the stay and awaited any side effects. I watched her for as long as my eyes would allow me to. I saw felt for her pulse and watched her breath. I remember changing her diaper and not seeing any signs of blood throughout the night. The next day I talked to the attending and nurse practitioner. I asked them would there be any side effects to look for past the 24-48 hr mark. They said no. We didn't leave the hospital until 8:30 and her post hydration was done. We had to come back the next day for clinic and get her neulasta shot.
We stayed at the new Ronald McDonald house in DC. It was definitely much nicer than the old one. We had our own bathroom and it felt like staying at the best western, except you clean house like it was your own. I was glad because Jasmine was definitely under the weather. She was more tired than usual and more withdrawn. I imagine the mistake from earlier had something to do with it. We got up early the next morning and got started on laundry and cleaning duties. We got up at 6am. We were done with linens, cleaning our room and bathroom, and our coffee mugs. I empty the dishwasher and started a new one. We checked out and were off. We got to clinic at 9 and were out by 10:30. We headed down 395 and I realized we would have to stop and get gas very soon. We decided to stop at Potomac mills and get gas and lunch for Jasmine. Chic fil A is one of her favs. Unfortunately we had come to find out that a double homicide had taken place earlier that morning there but didn't expect it to still be hopping with police. The entire area was taped off and very busy with law enforcement officials. We ate somewhere else because she decided to take another nap.
After getting home we, unpacked, started the wash, and got settled. We stopped at Walmart for some quick need be groceries since David just got paid. Jasmine was up and walking around but not full of energy. She went to bed after much coaxing and I got ready for work.
Hence today, came around and David had to go meet with the school. I rushed home literally quicker than usual to get home before a quarter to one. David and Jasmine had just come back from having lunch at subway and got me something from DD next door. He was outside blowing bubbles with her and we brought her in together. He headed to the school to talk with her therapists and teacher. They decided on letting her get 30 minutes a week of therapy. It was better than nothing. In the meantime, I had called to set up our SSI interview. I hope that we can get this so we can get her medicaid. Between the hospital bills and need for more one on one therapy, it would be really helpful this summer to get a teacher over here to help her work on speech with respite care. Only time will tell. Jasmine's asleep now and David's working. I'm off to finish filling out the rest of the demanded info for the interview. I'm glad Monday won't require much thinking due to no patients. Just grunt work, painting, cleaning, etc. Awesome...because I'll probably be fried from my long to do list. Such is life.
