This weekend has been pretty boring. The most recent treatment went good for the most part but I can tell something is going on. Jasmine is fighting something we can't see. I think its just side effects we can't see and she can't verbalize to us. It might even be a combination of this and some the over the top tantrums she's been having. Her hands and feet have been peeling so badly. I've been trying to keep at it with lotion but notice the redness to some of the more raw areas. She might even be having some post nasal drip effecting her throat. I've been wiping her mouth out and giving her thrush meds all weekend to finish out the course we started. Her breath is telling me her sinus is draining. I"m just waiting for Tuesday to come to check on her counts and see what is going on with her skin. I kind of sat out most of the weekend to keep her out of the holiday shopping madness. With more people come more germs, with more shopping comes more handling, with more handling comes less thought about who handled what and if they washed their hands. We don't need any of it. I hope our quick run into Walmart today was quick enough. Yes, I'm keeping her in a mini bubble until things have improved. As the days are getting colder, I find that we can't let her stay outdoors and play for too long. Those days of flying the kite out in front of the house or blowing bubbles are over. Now we have to reinvent fun time. We can't go out everyday and do something with her. She is much like me though. We don't like to be stuck indoors for too long. This two day stretch was too long. She loves just being out even if its a trip to the store down the road. I have thought of doing some craft projects with supplies have collected over the year. They may be a little out of her league but I'm willing to try. I've even asked David to participate in this.
After a blow up this afternoon, about the usual, I told him it would have been nice to take her to some place like Chuckie Cheese when they opened. Unfortunately, it just wasn't feasible to take her there all the time. Who could afford it? Maybe once a month or something, but not all the time. We could still manage to do things with her a home but it was just going to require more thought.
Today my sister came over and we made pizzas. We talked about how I needed to make changes to Jasmine's diet to help her health. She needed more veggies in her diet. So, I took the opportunity to make a spinach, onion and garlic pizza. Jasmine loved it. She was hesitant but finally got in to it. I think this change might go over well if I hide it with cheese. Jasmine was thrilled today to have company. She didn't want my sister to leave yet again. This time my sister worked her way to the door and as soon as her hand was on the door knob, Jasmine started crying. She was about to drop to the floor and knock her head on the tv console to go into a tantrum, when I caught her. She went limp so it made it so hard for me to pick her up. After I had her picked up, she reach let out a good screaming cry and grabbed my sister's fingers to pull her away from the door. When that didn't work, she threw her weight towards my sister and out of my arms. I grabbed my sisters soda and plate of leftovers, so they didn't drop to the floor. She managed to get a better hold of Jasmine then. Jasmine lied on her like she was going to nap on her shoulder and hugged her. She stopped crying. My sister was touched by it but felt bad. I told her not to feel bad because she knew what she was doing. When we did the switch, we did it quick because we knew what was coming. She screamed and cried as I told Jasmine to wave goodbye. I told her we would see her next weekend. I tried to draw faces on the fogged up glass of the storm door to distract her. It didn't work. I took her to her pizza and grabbed the drink I mixed her miralax in. She hadn't drank much today but I got her to drink this. I told her to drink because it would make her feel better. It might have been luck but it worked. She drank most of it and we finished up her pizza with a few more outbursts. I was running out of distractions so I sang a song that Jasmine loves. I have no idea why it came to my head but it did. The ice cream and cake song. I started it and didn't even know if it sounded right or if I was off. I did it again! She smiled big and I kept on going for a while.
We finished the night off with a bath and now she's sound a sleep. Now that this laundry has finished spinning, I can throw it in the dryer and go to bed.
Sunday, November 28, 2010
Friday, November 26, 2010
Week 7: Thursday
Well, its Thanksgiving and I am so very thankful this morning. The first being that we are home. I was doubtful yesterday after many promises of being able to come home for thanksgiving. It might have been my impatience and anticipation of some interruption in our schedule for Wednesday. In the end it was my own misgivings. The second thing is for the thanksgiving dinner brought to us this morning by David's sister. She has gone above and beyond. Everything from food, fun and creating the table's thanksgiving ambiance. The third thing we are thankful for is Jasmine's good spirits and happiness. She was so excited to be home last night and yet again this morning. She was so talkie last night, we could hardly get to sleep. When she woke up, she was dancing for everyone to see.
Her treatment went better than last time. However, our trip to DC could have gone a little smoother. We got up late. Like, really late. I was supposed to be up at 4 am and David came in about 2:30 or 3 am from work. I set my alarm and have no idea what happened. Thankfully, I have a radio alarm clock that goes off at the wrong time every morning. I'm so glad I've never bothered to fix it. It went off at 5:15am as always. We were supposed to leave at 4:45am or at the latest 5. I flew out of the bed and told David we were late. He slowly got up and I flipped all the lights on. I ran into the shower because I needed to wake up. I got out and grabbed our stuff and packed it in the car. We got Jasmine dressed and were out in the car ready to go in 15 min. I forgot one thing. We were near E on gas. We had to fill up and to top it off there was fog so thick I could barely see the house across the road. We had the makings for the perfect morning.....NOT! I was doubtful of many things at that point. I was sure we would get there late, start her chemo late, and not be home for thanksgiving.
We decided to take a different way as David suggested using his best friend TomTom. It was an alternate route. We decided to take our chances with it. To my surprise we were only a half our late. The fog was a major delay for many apparently. It never dissipated the entire ride. We split up and did what we could to make up for time. David took Jasmine up to get her GFR started and I ran back to the car to grab diaper bag and her medication list. We were in such a rush we forgot it. Once that was done we got started on her GFR and headed up to her next appointment with her oncologist. We made them aware that we were not done with nuclear medicine yet and had to go back down for one of the series of blood draws. They suggested splitting up and making her next appointment and getting registered with admissions. David did both of those while I took her down for her blood draw. I told the lab tech that she was getting admitted and we already had a room. They could do the other draws on the floor. He said it was fine. By the time we were done. David was on his way up to the floor when I just arrived. We went to her room and saw a familiar nurse. She was one of the good ones. She knew her stuff and we were comfortable with her. We unfortunately didn't start her chemo until 5:30 due to the GFR results not being in.
Jasmine got sick as usual but it was suggested to us that maybe we could try one other drug at her next admit. It was kind of the last alternative. They would prefer that she didn't get sick at all. Guess what so would we but it just wasn't happening. We did get them to lag her meds and overlap them more to give us better coverage. It seemed to work a little bit better. She got major sick at 3 different times in total. It was much improved in my eyes. This time David caught one while I dozed off. She did her usual and resisted the urge to throw up and out. She swallowed it back down and fought us everytime. She was very clear on what she wanted and didn't want. We also figured we could avoid any further complications if we stopped bringing in the cafeteria food cart food (much of it fried and having a very unappetizing smell) into the room. They would not leave you alone until made a visit and they always pushed you to get more than what you wanted. We understood the importance of her trying to eat anything but it was clear she wasn't even going to go there. She even refused to eat the sbarro's pizza I bought before we started her chemo. She was not going to eat anything at this facility. We would be lucky if she would even sip on anything. She had definitely made up her mind. So since we were paying for the food on the cart. Me or David would check out the menu and grab something for ourselves instead. A food cart helper had told us this once before at another admission. I thought it was wrong at the time but our visits to the cafe and cafeteria were starting to add up. We needed to cut down on those. It's not like they had any better of a selection. Even the fact that they served Starbucks coffee was no longer a thrill factor. All we needed was a cup of joe
Wednesday went about the same as any other final day of admit. There is of course some change in plan when the nurse gives us the plan from rounds. Now they wanted to sedate her for her CT scan and get it Thanksgiving morning. Wrong. I was not happy with this idea. We had talked about possibly getting her a scan done this visit but I forgot one important factor. Jasmine gets sick too frequently for her to be sedated in my book. I was not comfortable with that at all. I don't know how they could have been. I told the nurse without barking it at her, that we would be coming back the next tuesday for labs and thought maybe they could do it then. She just came on as our nurse and this didn't make for a good start. I was right. She avoided us as much as she could after that. We literally had to use the call button to get her back in the room. When she did have to switch meds, she did it at lightening speed. When the doctors came back to see Jasmine, they were okay with the Tuesday idea. What a relief! They didn't realize we had an appointment to come back and were just trying to get it done while we were there. So we dodged that bullet.
We left the hospital finally at about 9pm and were on the road. Traffic was not so bad but the speeders were definitely out. It was actually kind of scary. People were doing 85-90 whipping by us. I was not trying to attempt anything like that while I was tired. Hell, I wouldn't try that even if I was wide awake. One slip of the wheel could lead to serious loss of control. Some people can be so stupid. I just wanted to get us home in one piece. We did at about a little past midnight. Jasmine was asleep for the entire ride. When we got in the house, she was wide awake. OMG! This girl was playing and jabbering something like she had a jolt of caffeine. We tried to put her to bed after letting her get readjusted, and that didn't go so well. She was lying in between us, babbling and laughing. At one point, I had just fallen asleep and she hit me with arm when she busted out laughing again. I think it was about 1:30 or 2 when she finally settled down.
I forgot to undo my alarm on my phone, so I was up early the next morning. David's sister was coming by with the thanksgiving dinner. I went ahead and started the coffee and the wash. When she got her no one was up just yet except me. David got up and brought Jasmine over to say hi. She was just as happy as she was the night before. Part of what made this all great was that she had not gotten sick yet. She danced around for us.
Jasmine had managed to stay pretty content throughout the day and eat well until dinner. She pretty much stopped. I was not sure why. Maybe it was the smell of food again that was starting to make her sick. I tried to make her at least drink but she wasn't happy with that either.
After we finished our wonderful thanksgiving dinner, I took her off to bed with me. She was tired. It didn't take much for her to fall asleep. We watched some old SNL and we were both out like lights. I still had my glasses on when I dozed off. David woke me up and told me I still had them on. It had been a long day but a good one. I was very thankful and now tired.
Her treatment went better than last time. However, our trip to DC could have gone a little smoother. We got up late. Like, really late. I was supposed to be up at 4 am and David came in about 2:30 or 3 am from work. I set my alarm and have no idea what happened. Thankfully, I have a radio alarm clock that goes off at the wrong time every morning. I'm so glad I've never bothered to fix it. It went off at 5:15am as always. We were supposed to leave at 4:45am or at the latest 5. I flew out of the bed and told David we were late. He slowly got up and I flipped all the lights on. I ran into the shower because I needed to wake up. I got out and grabbed our stuff and packed it in the car. We got Jasmine dressed and were out in the car ready to go in 15 min. I forgot one thing. We were near E on gas. We had to fill up and to top it off there was fog so thick I could barely see the house across the road. We had the makings for the perfect morning.....NOT! I was doubtful of many things at that point. I was sure we would get there late, start her chemo late, and not be home for thanksgiving.
We decided to take a different way as David suggested using his best friend TomTom. It was an alternate route. We decided to take our chances with it. To my surprise we were only a half our late. The fog was a major delay for many apparently. It never dissipated the entire ride. We split up and did what we could to make up for time. David took Jasmine up to get her GFR started and I ran back to the car to grab diaper bag and her medication list. We were in such a rush we forgot it. Once that was done we got started on her GFR and headed up to her next appointment with her oncologist. We made them aware that we were not done with nuclear medicine yet and had to go back down for one of the series of blood draws. They suggested splitting up and making her next appointment and getting registered with admissions. David did both of those while I took her down for her blood draw. I told the lab tech that she was getting admitted and we already had a room. They could do the other draws on the floor. He said it was fine. By the time we were done. David was on his way up to the floor when I just arrived. We went to her room and saw a familiar nurse. She was one of the good ones. She knew her stuff and we were comfortable with her. We unfortunately didn't start her chemo until 5:30 due to the GFR results not being in.
Jasmine got sick as usual but it was suggested to us that maybe we could try one other drug at her next admit. It was kind of the last alternative. They would prefer that she didn't get sick at all. Guess what so would we but it just wasn't happening. We did get them to lag her meds and overlap them more to give us better coverage. It seemed to work a little bit better. She got major sick at 3 different times in total. It was much improved in my eyes. This time David caught one while I dozed off. She did her usual and resisted the urge to throw up and out. She swallowed it back down and fought us everytime. She was very clear on what she wanted and didn't want. We also figured we could avoid any further complications if we stopped bringing in the cafeteria food cart food (much of it fried and having a very unappetizing smell) into the room. They would not leave you alone until made a visit and they always pushed you to get more than what you wanted. We understood the importance of her trying to eat anything but it was clear she wasn't even going to go there. She even refused to eat the sbarro's pizza I bought before we started her chemo. She was not going to eat anything at this facility. We would be lucky if she would even sip on anything. She had definitely made up her mind. So since we were paying for the food on the cart. Me or David would check out the menu and grab something for ourselves instead. A food cart helper had told us this once before at another admission. I thought it was wrong at the time but our visits to the cafe and cafeteria were starting to add up. We needed to cut down on those. It's not like they had any better of a selection. Even the fact that they served Starbucks coffee was no longer a thrill factor. All we needed was a cup of joe
Wednesday went about the same as any other final day of admit. There is of course some change in plan when the nurse gives us the plan from rounds. Now they wanted to sedate her for her CT scan and get it Thanksgiving morning. Wrong. I was not happy with this idea. We had talked about possibly getting her a scan done this visit but I forgot one important factor. Jasmine gets sick too frequently for her to be sedated in my book. I was not comfortable with that at all. I don't know how they could have been. I told the nurse without barking it at her, that we would be coming back the next tuesday for labs and thought maybe they could do it then. She just came on as our nurse and this didn't make for a good start. I was right. She avoided us as much as she could after that. We literally had to use the call button to get her back in the room. When she did have to switch meds, she did it at lightening speed. When the doctors came back to see Jasmine, they were okay with the Tuesday idea. What a relief! They didn't realize we had an appointment to come back and were just trying to get it done while we were there. So we dodged that bullet.
We left the hospital finally at about 9pm and were on the road. Traffic was not so bad but the speeders were definitely out. It was actually kind of scary. People were doing 85-90 whipping by us. I was not trying to attempt anything like that while I was tired. Hell, I wouldn't try that even if I was wide awake. One slip of the wheel could lead to serious loss of control. Some people can be so stupid. I just wanted to get us home in one piece. We did at about a little past midnight. Jasmine was asleep for the entire ride. When we got in the house, she was wide awake. OMG! This girl was playing and jabbering something like she had a jolt of caffeine. We tried to put her to bed after letting her get readjusted, and that didn't go so well. She was lying in between us, babbling and laughing. At one point, I had just fallen asleep and she hit me with arm when she busted out laughing again. I think it was about 1:30 or 2 when she finally settled down.
I forgot to undo my alarm on my phone, so I was up early the next morning. David's sister was coming by with the thanksgiving dinner. I went ahead and started the coffee and the wash. When she got her no one was up just yet except me. David got up and brought Jasmine over to say hi. She was just as happy as she was the night before. Part of what made this all great was that she had not gotten sick yet. She danced around for us.
Jasmine had managed to stay pretty content throughout the day and eat well until dinner. She pretty much stopped. I was not sure why. Maybe it was the smell of food again that was starting to make her sick. I tried to make her at least drink but she wasn't happy with that either.
After we finished our wonderful thanksgiving dinner, I took her off to bed with me. She was tired. It didn't take much for her to fall asleep. We watched some old SNL and we were both out like lights. I still had my glasses on when I dozed off. David woke me up and told me I still had them on. It had been a long day but a good one. I was very thankful and now tired.
Sunday, November 21, 2010
Week 7: Sunday
Well, its that time again. Laundry is mostly done. Just need to pack my bag and Jasmine's. Today has gone by too quickly. After yesterday's cookie extravaganza, Jasmine passed out and went to sleep in a matter of 30 sec. This has truly been a record. She fell asleep with her fingers in her ears and hiding her face in the arm of the recliner. She was avoiding a commercial she hated. By the time I looked up again, I was sure she was awake. When I walked over, she was snoring into the cushion. Priceless.
Of course as she woke up today she was all smiles. We did our usual routine. I played in the playhouse with her for most of the morning. This was going to be the new thing for the next week or so. David was late to work yesterday but I wasn't going to let him be late again today. I put a frozen pizza in for our lunch/his breakfast. When it was out I sliced it up and Jasmine caught wind of it. She had just chosen to eat PB and J and I made two. She didn't want the pizza but now she did. I would let her have a slice. When she tried to shove a big piece her mouth and it didn't fit, she went ballistic. I broke out the pizza cutter and cut her slice into smaller pieces. She flipped out and had her first official tantrum. This one was like no other. Unbelievable. It went on for about 5 min. Me and David just let her cry and get it out of her system. She would look to us for a reaction and the minute we looked like we cared, she carried on again. What an actress!?! When she was done, she continued to eat her slice.
This evening she was into everything as I began to prepare our bags. I realized I had fed Jasmine but forgot myself. I decided to make a grilled cheese. I made 2 and let the first cool off. While I let the other one cool I began to put things away and clean up. When I looked over, I had 1 and 1/4 left. As I was trying to take this all in, Jasmine popped up in front of me to take another bite. Wow! Really? I will never eat at a separate time again. I will never leave my dinner unattended either. This girls appetite had no end.
To finish off the evening, I got Jasmine coloring and pasting. I had wanted to do this earlier in the day but she was getting bored as the evening was tampering to an end. She was very interested in what we were doing and particularly like the googly eyes. I was trying to make a turkey with the construction paper we had. We colored and pasted together. In the end, she was very happy with the result. I figured we would leave it behind for one of the people who have been watching our dogs for us while we were gone. I placed a bag of cookies that we made the day before with it. It was kind of a thanksgiving treat to say thank you. Its small but much love went into it.
Tomorrow will mark another long treatment. Thankfully the next treatment won't be until December. Well I better be heading off to bed myself. Sleeping beauty is already claimed most of the bed. Good night.
Of course as she woke up today she was all smiles. We did our usual routine. I played in the playhouse with her for most of the morning. This was going to be the new thing for the next week or so. David was late to work yesterday but I wasn't going to let him be late again today. I put a frozen pizza in for our lunch/his breakfast. When it was out I sliced it up and Jasmine caught wind of it. She had just chosen to eat PB and J and I made two. She didn't want the pizza but now she did. I would let her have a slice. When she tried to shove a big piece her mouth and it didn't fit, she went ballistic. I broke out the pizza cutter and cut her slice into smaller pieces. She flipped out and had her first official tantrum. This one was like no other. Unbelievable. It went on for about 5 min. Me and David just let her cry and get it out of her system. She would look to us for a reaction and the minute we looked like we cared, she carried on again. What an actress!?! When she was done, she continued to eat her slice.
This evening she was into everything as I began to prepare our bags. I realized I had fed Jasmine but forgot myself. I decided to make a grilled cheese. I made 2 and let the first cool off. While I let the other one cool I began to put things away and clean up. When I looked over, I had 1 and 1/4 left. As I was trying to take this all in, Jasmine popped up in front of me to take another bite. Wow! Really? I will never eat at a separate time again. I will never leave my dinner unattended either. This girls appetite had no end.
To finish off the evening, I got Jasmine coloring and pasting. I had wanted to do this earlier in the day but she was getting bored as the evening was tampering to an end. She was very interested in what we were doing and particularly like the googly eyes. I was trying to make a turkey with the construction paper we had. We colored and pasted together. In the end, she was very happy with the result. I figured we would leave it behind for one of the people who have been watching our dogs for us while we were gone. I placed a bag of cookies that we made the day before with it. It was kind of a thanksgiving treat to say thank you. Its small but much love went into it.
Tomorrow will mark another long treatment. Thankfully the next treatment won't be until December. Well I better be heading off to bed myself. Sleeping beauty is already claimed most of the bed. Good night.
Saturday, November 20, 2010
Week 6: Saturday
Saturday
So much was accomplished today. I started the day of with getting the dogs ready for their vet appointments. Jasmine was up immediately after I got out of the bed, so I didn't get to shower right away. She dragged me to the living room and turned on the tv. She insisted that we sit in the recliner to watch the tube together. We did for a few minutes and then she was off. She wanted breakfast next. Her gesture to turn on the microwave was a clear sign of her want. I told her to hang on and I decided to do things backwards for my morning plans. I made her breakfast and got my coffee started. When she was done eating I headed for the shower and told David to get ready because I was getting ready to leave in 10min. I showered dressed and started the car. I got the dogs on their leashes and we were ready. I told David that this was his final warning and I would be gone. He got up and dragged himself to the kitchen. I felt bad I had to interrupt his sleep. He had only been sleeping for 4 hours but he did volunteer to help. He looked tired. This was a bad idea.
I went to the vets office and then went to get their nails trimmed. I killed two birds with one stone. It wasn't very often that I got to do those things without Jasmine in the mix. I called David and he said he was getting everything packed in the car to go to the dump. Yes we deliver our own trash to the dump. Its just cheaper and never adds up to be as much as it would be to have the service. The dump was only 10 min away.
When I got home, no one was there. I decided to take advantage of the free moment and vacuum like crazy. The dogs were tired from their excitement with our trip and they were calm. I got a lot done without anyone here. David pulled in just as I finished up the last room. I opened the door and could hear Jasmine crying. She was fussing for a bit which was normal. It always starts when we literally hit the driveway. Weird. David distracted her with the "Oh there's mommy" line. She reached out for me and I picked her up. She stopped crying but I had to give her the super excited happy voice. The smile came back and that was all she wrote. We went inside and we talked for a bit. David said he had gotten a card from people he worked with. Everyone had chipped in and got us a gift card. Wow! I told him to hold on to it and stash it until the first of the year unless something emergent happened. We could use it to help pay for the hospital bills that would arrive shortly after the new year began. Our new plan would begin then and we did what we could to try to cover the family.
After I finished making dinner and David ate, he went back to sleep. He said he felt tired. I never heard him tell me wake him up at a particular time. At the moment, I was more concerned with what Jasmine could do to keep busy while I finished cleaning. I broke out her cardboard playhouse. It was something I folded up and put away to help rotate her toys and stuff. I brought her to her room where I set it up and her eyes lit up. It had been awhile since she had played with it. It kept her entertained for hours. I was able to clean the bathroom and mop the floors while intermittently joining her to play. I washed my hands of course between before play times. I went in and out of the playhouse at her request. Sometimes we would switch places and one person would play peek a boo from outside of the house. She was nothing but smiles.
Then my sister called and said she was free for a while. She said she would be by to make some cookies with us. I knew which ones she wanted to make. The Rainy Day Cookies. They were the only cookies we ever made from scratch as kids. They were the best to us and brought back so many memories. My mom had bought the book brand new out side of central park on 5 avenue. We didn't have much but it was a deal. Two books for a special price. This "Wonderful Rainy Week" book was one of them. This book was the prize of the two. Now Jasmine would get to enjoy the book as well. This was the first thing we would do from it. I kind of felt like the makings of the YaYa Sisterhood.
When the door bell rang, I wondered who it would be. It was my sister and I couldn't believe the time. I spaced the time and Jasmine let her in. I had just finished cleaning and now we were going to make cookies. Only one problem, I forgot about David. It was 4:15pm. He had to be at work at 4:30. I barged into the bedroom with flour covered hands and told him he was going to be late. He woke up out of a deep sleep. I could tell he was still processing what I was saying. I ran out and washed my hands. I grabbed his work clothes together and packed his lunch. I dropped his shoes in front of chair and said he could still make it if he hurried. Okay, I wasn't feeling very good about that idea either because I knew he was still tired. What a mess. I forgot about the time. Once he left we picked up right where we left off.
Jasmine had a great time making a mess. She's definitely a good cupcake helper but makes more of a mess with the cookie stuff. So much for a clean house. I'm glad my sister was there to help alleviate constant destruction of the rolled out dough. I guess she saw it as playdoh and wanted to rip it apart. We continued to make them quickly and get them into the oven before she got a hold of them. When they were done she enjoyed the hard work. They were just as good as we remembered. Jasmine like the fish shaped ones. I colored them in like Nemo. After some coffee we, said our goodbyes and Jasmine was trying to stall the event. She grabbed my sisters hand and tried to put her in the playhouse (which had been relocated to the living room). It didn't happen and so she threw a fit. I brought her to the door to say goodbye and she pouted with tears in her eyes.
As I'm typing this, Jasmine has quickly played lookout while I've been typing. She thinks I can't see her from the corner of my eye. She just reached off the cookie rack and grabbed a Nemo very quietly. She's taken a bite from one and put him back on the rack. She just hopped away. Okay, now she's back and tried to do the same thing but gave herself up. She dropped the cookie on the floor. Yes, she has the look of guilt. She won't look at me but is staring at the cookie in shock. If she could talk, I'm sure I would be hearing excuses. Her body language says it all. I throw it away and give her another one this time on her place mat. The smile returns at 100%.
Almost time for her medicine and to wrap it up for the evening. Tomorrow will be busy as well, but not as much as today.
I have so much to be thankful for today. For one the gift from David's coworkers. Then there is the help David gave me today and the visit from my sister. Now I have some delicious cookies for dinner. :)
So much was accomplished today. I started the day of with getting the dogs ready for their vet appointments. Jasmine was up immediately after I got out of the bed, so I didn't get to shower right away. She dragged me to the living room and turned on the tv. She insisted that we sit in the recliner to watch the tube together. We did for a few minutes and then she was off. She wanted breakfast next. Her gesture to turn on the microwave was a clear sign of her want. I told her to hang on and I decided to do things backwards for my morning plans. I made her breakfast and got my coffee started. When she was done eating I headed for the shower and told David to get ready because I was getting ready to leave in 10min. I showered dressed and started the car. I got the dogs on their leashes and we were ready. I told David that this was his final warning and I would be gone. He got up and dragged himself to the kitchen. I felt bad I had to interrupt his sleep. He had only been sleeping for 4 hours but he did volunteer to help. He looked tired. This was a bad idea.
I went to the vets office and then went to get their nails trimmed. I killed two birds with one stone. It wasn't very often that I got to do those things without Jasmine in the mix. I called David and he said he was getting everything packed in the car to go to the dump. Yes we deliver our own trash to the dump. Its just cheaper and never adds up to be as much as it would be to have the service. The dump was only 10 min away.
When I got home, no one was there. I decided to take advantage of the free moment and vacuum like crazy. The dogs were tired from their excitement with our trip and they were calm. I got a lot done without anyone here. David pulled in just as I finished up the last room. I opened the door and could hear Jasmine crying. She was fussing for a bit which was normal. It always starts when we literally hit the driveway. Weird. David distracted her with the "Oh there's mommy" line. She reached out for me and I picked her up. She stopped crying but I had to give her the super excited happy voice. The smile came back and that was all she wrote. We went inside and we talked for a bit. David said he had gotten a card from people he worked with. Everyone had chipped in and got us a gift card. Wow! I told him to hold on to it and stash it until the first of the year unless something emergent happened. We could use it to help pay for the hospital bills that would arrive shortly after the new year began. Our new plan would begin then and we did what we could to try to cover the family.
After I finished making dinner and David ate, he went back to sleep. He said he felt tired. I never heard him tell me wake him up at a particular time. At the moment, I was more concerned with what Jasmine could do to keep busy while I finished cleaning. I broke out her cardboard playhouse. It was something I folded up and put away to help rotate her toys and stuff. I brought her to her room where I set it up and her eyes lit up. It had been awhile since she had played with it. It kept her entertained for hours. I was able to clean the bathroom and mop the floors while intermittently joining her to play. I washed my hands of course between before play times. I went in and out of the playhouse at her request. Sometimes we would switch places and one person would play peek a boo from outside of the house. She was nothing but smiles.
Then my sister called and said she was free for a while. She said she would be by to make some cookies with us. I knew which ones she wanted to make. The Rainy Day Cookies. They were the only cookies we ever made from scratch as kids. They were the best to us and brought back so many memories. My mom had bought the book brand new out side of central park on 5 avenue. We didn't have much but it was a deal. Two books for a special price. This "Wonderful Rainy Week" book was one of them. This book was the prize of the two. Now Jasmine would get to enjoy the book as well. This was the first thing we would do from it. I kind of felt like the makings of the YaYa Sisterhood.
When the door bell rang, I wondered who it would be. It was my sister and I couldn't believe the time. I spaced the time and Jasmine let her in. I had just finished cleaning and now we were going to make cookies. Only one problem, I forgot about David. It was 4:15pm. He had to be at work at 4:30. I barged into the bedroom with flour covered hands and told him he was going to be late. He woke up out of a deep sleep. I could tell he was still processing what I was saying. I ran out and washed my hands. I grabbed his work clothes together and packed his lunch. I dropped his shoes in front of chair and said he could still make it if he hurried. Okay, I wasn't feeling very good about that idea either because I knew he was still tired. What a mess. I forgot about the time. Once he left we picked up right where we left off.
Jasmine had a great time making a mess. She's definitely a good cupcake helper but makes more of a mess with the cookie stuff. So much for a clean house. I'm glad my sister was there to help alleviate constant destruction of the rolled out dough. I guess she saw it as playdoh and wanted to rip it apart. We continued to make them quickly and get them into the oven before she got a hold of them. When they were done she enjoyed the hard work. They were just as good as we remembered. Jasmine like the fish shaped ones. I colored them in like Nemo. After some coffee we, said our goodbyes and Jasmine was trying to stall the event. She grabbed my sisters hand and tried to put her in the playhouse (which had been relocated to the living room). It didn't happen and so she threw a fit. I brought her to the door to say goodbye and she pouted with tears in her eyes.
As I'm typing this, Jasmine has quickly played lookout while I've been typing. She thinks I can't see her from the corner of my eye. She just reached off the cookie rack and grabbed a Nemo very quietly. She's taken a bite from one and put him back on the rack. She just hopped away. Okay, now she's back and tried to do the same thing but gave herself up. She dropped the cookie on the floor. Yes, she has the look of guilt. She won't look at me but is staring at the cookie in shock. If she could talk, I'm sure I would be hearing excuses. Her body language says it all. I throw it away and give her another one this time on her place mat. The smile returns at 100%.
Almost time for her medicine and to wrap it up for the evening. Tomorrow will be busy as well, but not as much as today.
I have so much to be thankful for today. For one the gift from David's coworkers. Then there is the help David gave me today and the visit from my sister. Now I have some delicious cookies for dinner. :)
Friday, November 19, 2010
Week 6: Thursday and Friday
This week has been pretty uneventful, which is a blessing. There is lots to be done but its not for the holiday coming up. It's more to avoid the holiday craziness. Jasmine has been more like herself since Tuesday (her most recent treatment). She is eating and drinking a lot more. Her counts have increased but her body gets tired easily. Lord knows, when she gets tired, she gets very irritable. We even took her out for a bit. We took her to a cool toy store that sells your classic toys that Toys R Us doesn't carry. She had a great time playing with a lot of the display tables and demo toys. She even attempted to crack open the plastic on some and tear the rest of a box from another. Where were these skills when it was time for her birthday? Here we were trying to get her to do just that and her she was doing it. She definitely has progressed. We even took her to Barnes and Noble to preview some new books for Christmas. She had such a good time she insisted on handing off the ones she was fond of. As they began to collect I slowly put them back in there place. We found something she took a lot of interest in and something we thought would be helpful in her development skills. It was a puzzle board with door latches, hooks, sliding locks, buckle locks, chain locks. She was content and tired so we headed home after some much needed coffee.
Jasmine went in for her ANC count check yesterday in preparation for her long treatment next week. David came to my job at lunch so that we could check out another toy store similar to the one in Richmond. We were trying to get ideas for Christmas. The kitchen I bought her for her birthday didn't survive and wasn't durable enough. This time we would be ready to look harder for the right make. It wouldn't be another kitchen because I was determined to repair the damage on the one she presently had. It wouldn't be as pretty as it was but it would be functional again.
Tonight I have washed the dogs and am getting them ready for their vet appointment tomorrow. They have been in need of a bath. I forget how much they weigh until I have to lift them into the tub. Jasmine has gotten a kick out of petting them. I personally am not happy with this gesture. The dogs are shedding wet hair and its all over her hands. Oh yeah, I forgot to mention she's eating PB and J. GROSS! The dogs have jelly and Jasmine has hairy hands. Time for them to head outside for a while. At least dinner has become easier to figure out. I lay out the many (not really) options that Jasmine has left us to pick from. PB and J, frozen pizza, or chicken nuggets were tonight's menu. I wrote it out on the board and lied out the options on the counter. She knew the drill. She picked PB and J. I love it! I thought it would be the chicken nuggets again. For lunch she kind of helped herself as I unloaded a few grocery items into the freezer. She picked the bag out of the freezer and tried to carry it out. We those in bulk because we know it will be eaten at least 4 times a week. She has a very select diet by choice of course. Then again, what 2 or 3 year old doesn't have a limited menu. Oh, I remember the days when we ate vegetables , pasta and meatballs, grilled chicken, even a hamburger and once a hot dog. Those memories were just that, memories. At least my girl, liked smoothies. I like the idea of her getting into those. Today I grabbed some smoothies for lunch. It was buy one get one free day. BONUS! I knew Jasmine would dig that one. She's always wanting mine. Today the world was hers with her 20oz smoothie (shared with daddy of course).
Much has to be done this weekend yet again. David told me he would jump in tomorrow and head to the dump with Jasmine while I went to the vets office. This would allow more time for me clean up the house and then attempt some crafting with her. I bought some googly eyes and Elmer's glue. I'm sure we can think of something fun to do for thanksgiving or Christmas. I bought some gingerbread cookie dough. Maybe we can make cookies and use our cutters. We'll see what energy and time will allow. :)
Jasmine went in for her ANC count check yesterday in preparation for her long treatment next week. David came to my job at lunch so that we could check out another toy store similar to the one in Richmond. We were trying to get ideas for Christmas. The kitchen I bought her for her birthday didn't survive and wasn't durable enough. This time we would be ready to look harder for the right make. It wouldn't be another kitchen because I was determined to repair the damage on the one she presently had. It wouldn't be as pretty as it was but it would be functional again.
Tonight I have washed the dogs and am getting them ready for their vet appointment tomorrow. They have been in need of a bath. I forget how much they weigh until I have to lift them into the tub. Jasmine has gotten a kick out of petting them. I personally am not happy with this gesture. The dogs are shedding wet hair and its all over her hands. Oh yeah, I forgot to mention she's eating PB and J. GROSS! The dogs have jelly and Jasmine has hairy hands. Time for them to head outside for a while. At least dinner has become easier to figure out. I lay out the many (not really) options that Jasmine has left us to pick from. PB and J, frozen pizza, or chicken nuggets were tonight's menu. I wrote it out on the board and lied out the options on the counter. She knew the drill. She picked PB and J. I love it! I thought it would be the chicken nuggets again. For lunch she kind of helped herself as I unloaded a few grocery items into the freezer. She picked the bag out of the freezer and tried to carry it out. We those in bulk because we know it will be eaten at least 4 times a week. She has a very select diet by choice of course. Then again, what 2 or 3 year old doesn't have a limited menu. Oh, I remember the days when we ate vegetables , pasta and meatballs, grilled chicken, even a hamburger and once a hot dog. Those memories were just that, memories. At least my girl, liked smoothies. I like the idea of her getting into those. Today I grabbed some smoothies for lunch. It was buy one get one free day. BONUS! I knew Jasmine would dig that one. She's always wanting mine. Today the world was hers with her 20oz smoothie (shared with daddy of course).
Much has to be done this weekend yet again. David told me he would jump in tomorrow and head to the dump with Jasmine while I went to the vets office. This would allow more time for me clean up the house and then attempt some crafting with her. I bought some googly eyes and Elmer's glue. I'm sure we can think of something fun to do for thanksgiving or Christmas. I bought some gingerbread cookie dough. Maybe we can make cookies and use our cutters. We'll see what energy and time will allow. :)
Tuesday, November 16, 2010
Week 6: Tuesday
Awesome! I'm am so happy to hear that we are kind of over the hump of Jasmine's treatment. No, its not the halfway mark but the pressure and stress will be somewhat lifted. Jasmine's oncologists said that after next weeks long treatment we would not have to be back until December. Yes the only scheduled treatments left were her long nasty treatments. I wish it could be the other way around but you don't always get what you want. Isn't that part of a song? Anyways, this will definitely give Jasmine's body time to recoup as well as ours. This lack of sleep is really starting to give me a headache, not to mention, make stupid decisions. This morning I decided to get on the treadmill instead of going back to sleep. I had an hour to kill but didn't use it wisely. I made myself more tired. I know exercise is healthy but not getting enough sleep is not.
The girl is a ball of fire this evening and I'm going to make this short. She's beckoning for me in her own special way. The house is full of Jasmine energy. We are loving it. Even if you are tired and frustrated, it brings a smile to your face just to see her move and play.
The girl is a ball of fire this evening and I'm going to make this short. She's beckoning for me in her own special way. The house is full of Jasmine energy. We are loving it. Even if you are tired and frustrated, it brings a smile to your face just to see her move and play.
Monday, November 15, 2010
Week 6: Monday
She's home! It feels so good to have her home again. When I walked through the door, she was laying on the floor with her playful grin. David was changing her diaper and she was busy trying to make the great escape. Somethings never change. :)
Today was a crazy day of anticipation and anxiety. David relieved me at the hospital at 4:30 and I went straight home. I was home by 6am and got ready for work. I was hoping and wishing for a lot of things. I wondered as to whether she would be discharged today or transferred to CNMC. I wanted nothing more than to have her home but knew it would be a slight chance. I called before work and during lunch. David text me any updates. The one I received before lunch didn't make me happy entirely. He told me first that they would be getting discharged by afternoon. This was all contingent on whether she would be able to continue hydration on her own. The next text said that her chemo treatment for this week would be cancelled and pushed back a week. I was not happy with this. Once again, I was fighting with the control factor. This was something that was out of my hands and in Jasmine's best interest. I could not contain my frustration with it though. I wanted to blame something or someone for it. I partially blame myself for this because I was starting to come down with something myself and nearly did my usual. I didn't take any additional precautions other than the usual hand washing, lysol spraying and hand sanitizer. Now everything was going to be offset by the change in schedule. My first thought was its going to be a bad Christmas. I really didn't care about thanksgiving as much as I did about Jasmine's Christmas. The second thought was the pressure it would create at work. Everyone had been covering for me and now it would interfere with the holiday schedule. I hate complicating things for others. I rather bare the burden of any complication so that others didn't have to. I have always tried to be considerate of others even the though it sometimes resulted in more trouble for myself. By the end of lunch, I was not feeling so great. I had forgotten my lunch but remembered my lunch bag and snack. I was frustrated with it all.
By the end of the day, I received another message from David. He said that he was on his way home and got another message from Jasmine's oncologist. She said they were going to keep her chemo treatment as scheduled and that she talked to the oncologist at the local hospital. It sounded to her like Jasmine was doing well and she didn't foresee any issue with proceeding. It's funny how quickly my day had flipped and flopped.
Now I am home with my super tired husband and my Jasmine. Poor David. He just got off of work and had to hang out at the hospital for the day. I at least got 4 or 5 hours sleep. Tomorrow he had to take her up to DC. Thankfully he would be meeting his sister at a half way point to DC. I was a little more at ease with the travel tomorrow knowing he had company. It will be an early day tomorrow as usual for a tuesday. Hope her count is better tomorrow. I think it will be. She's eating and drinking again. She's happy to be home and so are we.
Today was a crazy day of anticipation and anxiety. David relieved me at the hospital at 4:30 and I went straight home. I was home by 6am and got ready for work. I was hoping and wishing for a lot of things. I wondered as to whether she would be discharged today or transferred to CNMC. I wanted nothing more than to have her home but knew it would be a slight chance. I called before work and during lunch. David text me any updates. The one I received before lunch didn't make me happy entirely. He told me first that they would be getting discharged by afternoon. This was all contingent on whether she would be able to continue hydration on her own. The next text said that her chemo treatment for this week would be cancelled and pushed back a week. I was not happy with this. Once again, I was fighting with the control factor. This was something that was out of my hands and in Jasmine's best interest. I could not contain my frustration with it though. I wanted to blame something or someone for it. I partially blame myself for this because I was starting to come down with something myself and nearly did my usual. I didn't take any additional precautions other than the usual hand washing, lysol spraying and hand sanitizer. Now everything was going to be offset by the change in schedule. My first thought was its going to be a bad Christmas. I really didn't care about thanksgiving as much as I did about Jasmine's Christmas. The second thought was the pressure it would create at work. Everyone had been covering for me and now it would interfere with the holiday schedule. I hate complicating things for others. I rather bare the burden of any complication so that others didn't have to. I have always tried to be considerate of others even the though it sometimes resulted in more trouble for myself. By the end of lunch, I was not feeling so great. I had forgotten my lunch but remembered my lunch bag and snack. I was frustrated with it all.
By the end of the day, I received another message from David. He said that he was on his way home and got another message from Jasmine's oncologist. She said they were going to keep her chemo treatment as scheduled and that she talked to the oncologist at the local hospital. It sounded to her like Jasmine was doing well and she didn't foresee any issue with proceeding. It's funny how quickly my day had flipped and flopped.
Now I am home with my super tired husband and my Jasmine. Poor David. He just got off of work and had to hang out at the hospital for the day. I at least got 4 or 5 hours sleep. Tomorrow he had to take her up to DC. Thankfully he would be meeting his sister at a half way point to DC. I was a little more at ease with the travel tomorrow knowing he had company. It will be an early day tomorrow as usual for a tuesday. Hope her count is better tomorrow. I think it will be. She's eating and drinking again. She's happy to be home and so are we.
Sunday, November 14, 2010
Week 6: Sunday
So let me recap what has been happening.
Friday evening, Jasmine developed a low grade fever that turned into a full fledged fever. I called CNMC about it and followed the plan once again. This time they advised me to go to the local ER. I scrambled around to get her stuff together and dressed. I put her cream on her port because I knew they would have to access it for blood and IV fluids. Off we went, and arrived at the ER by 11 pm. They must have received a call from CNMC because at this point they were aware of our arrival at registration. The triage nurse brought us back and took her vitals. Her fever had dropped a bit again. It felt like a repeat of tuesday evening or maybe it was wednesday evening. I can't tell anymore without looking at it in our notebook of current events, meds, and temps. All of it was on my backpack which was not easily accessible with Jasmine clinging to me, and I clinging to my purse and her belongings.
Once, I was back in the ER I gave the resident our letter stating all about us and what needed to be done. She and all the ER staff were great. They kept us isolated from everyone in the waiting room and all those in the ER. I tried to stay with it because I had already been sleep deprived and now I was in for a long evening. After Jasmine relaxed a little more and went to sleep, I tried to explain to the next person our story and what brought us to the ER. The resident came in and told us that her counts come back very low. She said the plan would be for her to get fluids and be admitted. It was probably 5:30 or 6 by the time we made it up to the floor to be admitted. They had been out of beds for some time and told me when one did become available they would let us know. Part of the delay had to do with getting a private room (for isolation) amongst the few beds that would open. I was trying to stay awake for most of that time but was fighting sleep in a table chair.
Once we got moved upstairs, they mentioned that we would have to be in the PICU because it would allow two things, isolation and close monitoring. I knew they had a flat bed in those rooms. Yippie! Never thought I would say that. The chair had done a job on me and my back. When we settled in there, I immediately laid down and got 2 hours sleep. Wow, I felt much better already. I got up and noticed that shift change had happened and we had a familiar nurse. She remembered us and asked how Jasmine was doing. I had some peace of mind when I knew she would be our nurse. I asked her if I could go for 5 min and use the restroom and grab coffee. She said she would be with Jasmine and watch her. I hurried and did both in record time 7 min (elevator time included). She was still in the room and Jasmine up so I turned on the tv. I noticed she was smiling again. Once again she refused to eat or drink. By late morning, I could tell she was feeling a little more energetic. By the time the oncologist came in to talk to me, I was more alert. She introduced herself and told me she was new to the hospital. I was relieved it was not the oncologist we had met some months ago. I was still guarded though. She explained to me that her counts were even lower than yesterday. She was in need of platelets and blood. We could wait until the next day but she was sure her counts would not make the cut. I agreed. I knew Jasmine needed a boost. We decided to proceed with this and see if we could get her back up and going for her next treatment. She was really nice and proceeded with caution. I was not excited about her being there until Monday but I knew that our oncologist would be in the DC office then and the one at UVA. I had to be in touch with ours before theirs got a hold of us. I would opt for Jasmine to be transferred in an instant if I knew she would have anything to do with Jasmine's treatment. This was my main problem with this hospital, this one person.
David came to relieve me and brought me dinner. I explained all that had happened and what was going to happen next. After I eat dinner, I left and headed home. Once I was home I took a much needed shower and laid down to watch some tube. David said Jasmine would not stop crying and seemed tired. I knew she would be since she didn't nap. David sent me a picture message of Jasmine finally asleep. After talking to him a bit more, I decided I should do the same as Jasmine.
This morning (Sunday), I feel better. With nearly 12 hours sleep under my belt, I needed to get up a new game plan. I needed to call David and see how Jasmine was doing. Jasmine must be feeling much better because she was standing in her crib and wanting to get out. Only problem being, we still didn't know what her counts were. We would not be released from the hospital with her counts increased even until we received her results from the cultures. Her cultures would not be done until Sunday evening/Monday early morning. At this point I want nothing more than for Jasmine to be better and for her to be out of this facility. I am so fearful that the evil oncologist whom we met a few months ago would try to alter Jasmine's treatment or even tamper with the plan CNMC had come up with for us. For now , I need to finish up the laundry and pack up my stuff for work tomorrow. I need to make David's and my overnight back complete again for the "just in case" trip. Much to do, so little time. I keep praying that all will go smoothly and there will be no hiccups in this current event.
Friday evening, Jasmine developed a low grade fever that turned into a full fledged fever. I called CNMC about it and followed the plan once again. This time they advised me to go to the local ER. I scrambled around to get her stuff together and dressed. I put her cream on her port because I knew they would have to access it for blood and IV fluids. Off we went, and arrived at the ER by 11 pm. They must have received a call from CNMC because at this point they were aware of our arrival at registration. The triage nurse brought us back and took her vitals. Her fever had dropped a bit again. It felt like a repeat of tuesday evening or maybe it was wednesday evening. I can't tell anymore without looking at it in our notebook of current events, meds, and temps. All of it was on my backpack which was not easily accessible with Jasmine clinging to me, and I clinging to my purse and her belongings.
Once, I was back in the ER I gave the resident our letter stating all about us and what needed to be done. She and all the ER staff were great. They kept us isolated from everyone in the waiting room and all those in the ER. I tried to stay with it because I had already been sleep deprived and now I was in for a long evening. After Jasmine relaxed a little more and went to sleep, I tried to explain to the next person our story and what brought us to the ER. The resident came in and told us that her counts come back very low. She said the plan would be for her to get fluids and be admitted. It was probably 5:30 or 6 by the time we made it up to the floor to be admitted. They had been out of beds for some time and told me when one did become available they would let us know. Part of the delay had to do with getting a private room (for isolation) amongst the few beds that would open. I was trying to stay awake for most of that time but was fighting sleep in a table chair.
Once we got moved upstairs, they mentioned that we would have to be in the PICU because it would allow two things, isolation and close monitoring. I knew they had a flat bed in those rooms. Yippie! Never thought I would say that. The chair had done a job on me and my back. When we settled in there, I immediately laid down and got 2 hours sleep. Wow, I felt much better already. I got up and noticed that shift change had happened and we had a familiar nurse. She remembered us and asked how Jasmine was doing. I had some peace of mind when I knew she would be our nurse. I asked her if I could go for 5 min and use the restroom and grab coffee. She said she would be with Jasmine and watch her. I hurried and did both in record time 7 min (elevator time included). She was still in the room and Jasmine up so I turned on the tv. I noticed she was smiling again. Once again she refused to eat or drink. By late morning, I could tell she was feeling a little more energetic. By the time the oncologist came in to talk to me, I was more alert. She introduced herself and told me she was new to the hospital. I was relieved it was not the oncologist we had met some months ago. I was still guarded though. She explained to me that her counts were even lower than yesterday. She was in need of platelets and blood. We could wait until the next day but she was sure her counts would not make the cut. I agreed. I knew Jasmine needed a boost. We decided to proceed with this and see if we could get her back up and going for her next treatment. She was really nice and proceeded with caution. I was not excited about her being there until Monday but I knew that our oncologist would be in the DC office then and the one at UVA. I had to be in touch with ours before theirs got a hold of us. I would opt for Jasmine to be transferred in an instant if I knew she would have anything to do with Jasmine's treatment. This was my main problem with this hospital, this one person.
David came to relieve me and brought me dinner. I explained all that had happened and what was going to happen next. After I eat dinner, I left and headed home. Once I was home I took a much needed shower and laid down to watch some tube. David said Jasmine would not stop crying and seemed tired. I knew she would be since she didn't nap. David sent me a picture message of Jasmine finally asleep. After talking to him a bit more, I decided I should do the same as Jasmine.
This morning (Sunday), I feel better. With nearly 12 hours sleep under my belt, I needed to get up a new game plan. I needed to call David and see how Jasmine was doing. Jasmine must be feeling much better because she was standing in her crib and wanting to get out. Only problem being, we still didn't know what her counts were. We would not be released from the hospital with her counts increased even until we received her results from the cultures. Her cultures would not be done until Sunday evening/Monday early morning. At this point I want nothing more than for Jasmine to be better and for her to be out of this facility. I am so fearful that the evil oncologist whom we met a few months ago would try to alter Jasmine's treatment or even tamper with the plan CNMC had come up with for us. For now , I need to finish up the laundry and pack up my stuff for work tomorrow. I need to make David's and my overnight back complete again for the "just in case" trip. Much to do, so little time. I keep praying that all will go smoothly and there will be no hiccups in this current event.
Friday, November 12, 2010
Week 5: Thursday and Friday
Today did not start out very good. Jasmine was crying again and I had so little time to get out the door. She just wanted me to hold her and sit with her. She would occassionally walk over to the kitchen counter and look for something, food. Once again part of the problem with her mouth at this point was the texture of the foods she wanted to eat. I couldn't give her the usual stuff because it would feel like her mouth was being cut open. I resorted to the Go gurt. She was more accepting of it when I sat with her on my lap in the recliner. We watched Sesame street and she slowly ate her yogurt. By the time we were done with that, I got up and she fussed. She wanted me to sit with her and pick her up. She would drag me by my figure to the recliner again with a book this time. I had to go and get going. I was going to be late for work if I didn't leave. I had to wake David up and make sure he knew what she wanted. I ran off trying to get my lunch together and shoes on. I got my jacket on and she started crying again. She wanted me to stay but I couldn't. I gave her a hug and ran off. Ahh, I forgot to fill up the car. I was going to be late.
It bothered me to have to leave her like that but it had to be done. The whole way to work I had to talk myself out of crying. I couldn't provide the one thing she wanted this morning, Me. I hate this. I know hate is such a strong word but that's how I feel about this cancer.
By the time I got home, her condition hadn't changed. She was still feeling the same. I bought her some baby food and a smoothie during my lunch. I had hoped the smoothie would be a winner but it wasn't. Out of desperation I tried the baby food. I knew it would upset her. Yet another no go. This time I offered her some milk. She hadn't drank anything all day. David said he changed a couple of wet diapers but the last ones weren't much. She's not drinking enough and I can see it by looking at her skin. She sucked down 2 individual milks. By this time I had to go out and grab some more milk for one and some other small items. The dogs were out of food too.
Throughout all this these dogs have been outstanding. They have managed to keep it together throughtout the shift change of people coming to take care of them. Their love for Jasmine is undying. The oldest one misses her the most. When we come home she wants to be around her up close and too personal. I tell her to stop but its no use. I think its sweet and never push the subject any further.
Off I went to get her some milk and came back only to see the time. It was was a quarter to 9. I was officially exhausted. On the way back, I could feel myself swirving on the road. No more trips after work and at night. I need to be in one piece if I want to help anyone.
Friday
Okay, so I got up this morning and I checked out Amanda's fundraising page. I'm thankful for people's kindness and thoughtfulness. Amanda, whom I have never met (but know through a friend) , is running a Marathon and made Jasmine her cause. When she asked me, if she could make Jasmine her cause, I didn't know what to say. I have participated in fundraising events myself. Never in a million years did I ever imagine we would be on the other end of the event. I thanked her for making Jasmine her cause and for wanting to make her run more personal. I honestly cried when I read what she wanted to do for Jasmine. Here was someone who I had not met and people I have not seen in so long helping Jasmine. It warms my heart.
I wish I could say Jasmine was feeling better but I can't. She is still the same. It's definitely thrush and maybe some mouth sores I can't see. I'm sure she will get over this soon but its a blow every time something like this happens. It makes me worry so much.
Thankfully, my cold is letting up a bit and Jasmine still has some energy. She didn't want to do what I set out for her to play but after she saw it, it was all good. I threw out a big pad on the floor and broke out some finger paints. I need to clean the house and she needed a bath. I call that perfect timing. I squirted out all 4 colors and let her do her thing. Of course, I never did take into account the possibility of her socks soaking in paint. When she was done, we wiped her hands and off she went. It wasn't until she got to the recliner did I realize she had it on her socks. Thank goodness for washable paint.
Well, I guess that does it for her. She's napping now and David has gone to work. I think I will take this opportunity for some much needed sleep.
It bothered me to have to leave her like that but it had to be done. The whole way to work I had to talk myself out of crying. I couldn't provide the one thing she wanted this morning, Me. I hate this. I know hate is such a strong word but that's how I feel about this cancer.
By the time I got home, her condition hadn't changed. She was still feeling the same. I bought her some baby food and a smoothie during my lunch. I had hoped the smoothie would be a winner but it wasn't. Out of desperation I tried the baby food. I knew it would upset her. Yet another no go. This time I offered her some milk. She hadn't drank anything all day. David said he changed a couple of wet diapers but the last ones weren't much. She's not drinking enough and I can see it by looking at her skin. She sucked down 2 individual milks. By this time I had to go out and grab some more milk for one and some other small items. The dogs were out of food too.
Throughout all this these dogs have been outstanding. They have managed to keep it together throughtout the shift change of people coming to take care of them. Their love for Jasmine is undying. The oldest one misses her the most. When we come home she wants to be around her up close and too personal. I tell her to stop but its no use. I think its sweet and never push the subject any further.
Off I went to get her some milk and came back only to see the time. It was was a quarter to 9. I was officially exhausted. On the way back, I could feel myself swirving on the road. No more trips after work and at night. I need to be in one piece if I want to help anyone.
Friday
Okay, so I got up this morning and I checked out Amanda's fundraising page. I'm thankful for people's kindness and thoughtfulness. Amanda, whom I have never met (but know through a friend) , is running a Marathon and made Jasmine her cause. When she asked me, if she could make Jasmine her cause, I didn't know what to say. I have participated in fundraising events myself. Never in a million years did I ever imagine we would be on the other end of the event. I thanked her for making Jasmine her cause and for wanting to make her run more personal. I honestly cried when I read what she wanted to do for Jasmine. Here was someone who I had not met and people I have not seen in so long helping Jasmine. It warms my heart.
I wish I could say Jasmine was feeling better but I can't. She is still the same. It's definitely thrush and maybe some mouth sores I can't see. I'm sure she will get over this soon but its a blow every time something like this happens. It makes me worry so much.
Thankfully, my cold is letting up a bit and Jasmine still has some energy. She didn't want to do what I set out for her to play but after she saw it, it was all good. I threw out a big pad on the floor and broke out some finger paints. I need to clean the house and she needed a bath. I call that perfect timing. I squirted out all 4 colors and let her do her thing. Of course, I never did take into account the possibility of her socks soaking in paint. When she was done, we wiped her hands and off she went. It wasn't until she got to the recliner did I realize she had it on her socks. Thank goodness for washable paint.
Well, I guess that does it for her. She's napping now and David has gone to work. I think I will take this opportunity for some much needed sleep.
Wednesday, November 10, 2010
Week 5: Wednesday
After I came home yesterday from work, David tells me Jasmine is not feeling like herself. She was a little lethargic and she really wasn't eating or drinking. She was just in for her chemo treatment and had a low blood count. I figured she would be susceptible to nearly anything at this point. The first thing they said to watch for was fever. She felt a little warm but nothing to get excited about. After a couple of hours that changed. Her temperature rose to what our handbook guidelines refer to as a low grade fever. I waited and checked her temperature every hour until 1 am. From 11pm to 12 am, her temp had increased from 98.3 to 99.5. I checked it again at 1 pm and it was 100.3. I could hardly believe it and checked it again in the other arm. This time it was 98.3. What to do? I called the CNMC after hours phone number like our plan stated. I talk to the operator and left my message for the oncologist on duty to call me. Thirty minutes had passed and no call. I called them back and told the operator I had not received a call. She tried him again. This time he was trying to call me as I was on hold for him. I spoke with him for a short while and explained what had happened. He told us to continue to monitor her temperature and if it was 100.3 then to call back and then go to our local ER.
I felt slightly better after talking with him but said I would check her temp again as soon as I woke up for work. I changed my clothes and into my pajamas again. I removed our emergency overnight bags from the doorway and headed to bed again. 3 more hours and I would be getting back up for work. I guess it wasn't a smart idea to have a cup of coffee while I waited for the physician to call me. I just thought if I had to drive that I would be more awake. I honestly didn't think I would get to go back to sleep. As you can imagine, sleep was even more minimal due to my goof up.
When I got up, I checked her temperature again. This time her temp was 97.8. She still felt warm but it was down from what it was. Jasmine was up by the time I got ready to leave. She sought me out in the bathroom and wanted me to hug her. I finished up and set out to the kitchen to see if she wanted to drink something or eat. I set out her usual wheat toast and go-gurt. I put out some milk in one cup and her flavored water in the other. She started with a bite of toast after much hesitation. She took a sip of the water and had more toast. Something was better than nothing. She brought the yogurt to me and I helped her with it. We were doing better in the food department but not so good on the hydration part.
Lunch came around and I called to see how she was doing. She was asleep. David said her temperature was fine and her doctor called to follow up on Jasmine's condition. She reiterated the plan and told us to call if we had anymore problems. By the time I got home everyone was asleep. David was napping with Jasmine who had not woken up yet. I changed and lay down with them. Jasmine wasn't really sleeping but she was laying there still with her eyes open. I said hi and she proceeded to play with my hair again. I figured at this point she wasn't going back to bed, so I turned the DVD player on. I was hoping she was going at least lay there and watch a movie while I rested a bit. No such luck. She wanted to head out into the living room to play. Off we went to play in the living room. I tried to push a cup of flavored water in her direction and she pushed my hand away. I got her to smile when I joked with her. I instantly noticed something different. Her gums were especially white. I got my penlight out and oral swab. I dipped it in saline and wiped it throughout her mouth. I used it to pry while I looked with the light. Yeah, something was going on. I thought it might be thrush but I'm not a doctor. I asked David to get up and help me with holding her while I got a better look. She fussed and cried. I couldn't see any better than I had before. I thought it was call worthy anyways. So I picked up the phone and called the nurses line at CNMC. If it was thrush we already had a script for it. I just needed to know if it was okay to use again. I called and got no response and so I called again. This time I got a live person and they were going to get Jasmine's doctor on the line. Jasmine's favorite doctor got on the phone and told me to go ahead and give her the med. It wouldn't hurt even if it wasn't but we needed to watch how much liquid she was taking in. The fear was dehydration. She said she would call us tomorrow, but if anything else should happen until then just call them.
Well, for dinner she had two milks and a Go-gurt. Something was better than nothing. We can only hope that things will be better tonight and tomorrow. I'm praying and thank everyone for their prayers. We want to stay as clear as possible from any additional hospital stays, especially ER visits.
Frankly, I'm with Jasmine. I don't really want to eat much either. I'm just too tired and I feel like I've a cold coming on.
I felt slightly better after talking with him but said I would check her temp again as soon as I woke up for work. I changed my clothes and into my pajamas again. I removed our emergency overnight bags from the doorway and headed to bed again. 3 more hours and I would be getting back up for work. I guess it wasn't a smart idea to have a cup of coffee while I waited for the physician to call me. I just thought if I had to drive that I would be more awake. I honestly didn't think I would get to go back to sleep. As you can imagine, sleep was even more minimal due to my goof up.
When I got up, I checked her temperature again. This time her temp was 97.8. She still felt warm but it was down from what it was. Jasmine was up by the time I got ready to leave. She sought me out in the bathroom and wanted me to hug her. I finished up and set out to the kitchen to see if she wanted to drink something or eat. I set out her usual wheat toast and go-gurt. I put out some milk in one cup and her flavored water in the other. She started with a bite of toast after much hesitation. She took a sip of the water and had more toast. Something was better than nothing. She brought the yogurt to me and I helped her with it. We were doing better in the food department but not so good on the hydration part.
Lunch came around and I called to see how she was doing. She was asleep. David said her temperature was fine and her doctor called to follow up on Jasmine's condition. She reiterated the plan and told us to call if we had anymore problems. By the time I got home everyone was asleep. David was napping with Jasmine who had not woken up yet. I changed and lay down with them. Jasmine wasn't really sleeping but she was laying there still with her eyes open. I said hi and she proceeded to play with my hair again. I figured at this point she wasn't going back to bed, so I turned the DVD player on. I was hoping she was going at least lay there and watch a movie while I rested a bit. No such luck. She wanted to head out into the living room to play. Off we went to play in the living room. I tried to push a cup of flavored water in her direction and she pushed my hand away. I got her to smile when I joked with her. I instantly noticed something different. Her gums were especially white. I got my penlight out and oral swab. I dipped it in saline and wiped it throughout her mouth. I used it to pry while I looked with the light. Yeah, something was going on. I thought it might be thrush but I'm not a doctor. I asked David to get up and help me with holding her while I got a better look. She fussed and cried. I couldn't see any better than I had before. I thought it was call worthy anyways. So I picked up the phone and called the nurses line at CNMC. If it was thrush we already had a script for it. I just needed to know if it was okay to use again. I called and got no response and so I called again. This time I got a live person and they were going to get Jasmine's doctor on the line. Jasmine's favorite doctor got on the phone and told me to go ahead and give her the med. It wouldn't hurt even if it wasn't but we needed to watch how much liquid she was taking in. The fear was dehydration. She said she would call us tomorrow, but if anything else should happen until then just call them.
Well, for dinner she had two milks and a Go-gurt. Something was better than nothing. We can only hope that things will be better tonight and tomorrow. I'm praying and thank everyone for their prayers. We want to stay as clear as possible from any additional hospital stays, especially ER visits.
Frankly, I'm with Jasmine. I don't really want to eat much either. I'm just too tired and I feel like I've a cold coming on.
Tuesday, November 9, 2010
Week 5: Tuesday
Yes, another bright and early tuesday. Jasmine and David are off to yet another treatment. I'm learning that the easiest way to get them up is by turning on the tv. She's not excited about the time I can tell but who would be. My husband especially is not thrilled. He told me yesterday to get him up at 5am. They have to leave here by 5:15 to make it there in time. Yeah, sure thing. I know how long it takes him to get out the door. In that case, I might as well call them and tell them he'll be there by lunch. My compromise is that we all be up by 4:30am. Well, it worked smoothly up until I asked him whether he wanted the TomTom. "I don't need that thing because I have a map," is what he barked. Okay. Now, I'm a little worried. Maybe I should call them and warn them. This should be interesting because now he doesn't have internet on his phone or I a emergency GPS on my phone.
Yesterday, we found a way to drop our internet package and not break our contract or the bank for that matter. We are trying to save and cut where we can. David's new insurance policy for next year will cost more. It will be three times more than what it was. Last year we got hit hard with hospital bills from Jasmine being in and out of the hospital so much from what we would later find out was a tumor. So this time, we will try to be proactive about her coverage and increase it to pay less out of pocket. We still need to play catch up. I'm sure it will all balance out eventually. Next we will cut the cable. It was getting old anyways. So many channels and nothing on each of them. This will be interesting for Jasmine since tv is her favorite thing to watch. She will adjust over time.
However the real debate for me is whether to give my child another label. When Jasmine attended school last year, I was told that she could be eligible for Medicaid. If that was the case I was okay with that but we thought we be just above the income range. As it just so happens, there is a waiver she would qualify for that would overlook our income. The catch is that she would have to be declared disabled. I wasn't thrilled with that idea because I felt like it was broadcasting my child as the outcast of society. I would have to say that her hearing loss and autism made her incapable. I hated looking at it like that. I had and still have great expectations for her. I don't want to put a label on her that will stick with her for life. Labels mold self image and confidence. Life can be difficult as it is when coming to age, why make it harder? Although, now she has been diagnosed with cancer. Do I look to the future as I have been or do I just look only to immediate future? I've been stalling because I hate the idea of trying to prove that my child is eligible. I feel like I'm trying to get over on the system because I have to prove she is disabled. Maybe its just how I'm looking at. I don't know.... All I know is that I think we will have to do this to survive. I can't predict the future and I don't know what else we will be up against. It is defined somewhere in what I read that her condition would have to result in death. Just reading it made me just put the breaks. I don't want to think about things like that and prefer to stay positive. The government was going to make me look at it once again from the negative aspects of her health and being. Its sad that it comes to this. It makes me think back on all the times my mother had told me about applying for assistance. She said when you applied for welfare or food stamps even, you were asked everything and anything. She said it was as bad as asking you what color underwear you had. Nothing was personal about your life. It is ripped open from every possible way to steal whatever dignity and pride you had left. I guess that is what I personally had to do. Swallow my pride and do what was best for Jasmine and our family.
Anyways,on another note, she slept well last night, with no nightmares thankfully. She's been tossing and turning a lot, but its the gut wrenching cries that are so unbearable. She's inconsolable and the only thing that seems to calm her is twirling my hair. It hurts because she twists so hard. I guess she figures the harder she twists ,eventually she will feel it. Unfortunately, the hair is on my head and she doesn't realize it. In the morning, I will find that I have one or two things. The first is that I have lost some hair myself. The second being I have I have a huge knot in my hair. A small price to pay for my child's comfort in such a situation. As I have been told so many times, "it will grow back."
Yesterday, we found a way to drop our internet package and not break our contract or the bank for that matter. We are trying to save and cut where we can. David's new insurance policy for next year will cost more. It will be three times more than what it was. Last year we got hit hard with hospital bills from Jasmine being in and out of the hospital so much from what we would later find out was a tumor. So this time, we will try to be proactive about her coverage and increase it to pay less out of pocket. We still need to play catch up. I'm sure it will all balance out eventually. Next we will cut the cable. It was getting old anyways. So many channels and nothing on each of them. This will be interesting for Jasmine since tv is her favorite thing to watch. She will adjust over time.
However the real debate for me is whether to give my child another label. When Jasmine attended school last year, I was told that she could be eligible for Medicaid. If that was the case I was okay with that but we thought we be just above the income range. As it just so happens, there is a waiver she would qualify for that would overlook our income. The catch is that she would have to be declared disabled. I wasn't thrilled with that idea because I felt like it was broadcasting my child as the outcast of society. I would have to say that her hearing loss and autism made her incapable. I hated looking at it like that. I had and still have great expectations for her. I don't want to put a label on her that will stick with her for life. Labels mold self image and confidence. Life can be difficult as it is when coming to age, why make it harder? Although, now she has been diagnosed with cancer. Do I look to the future as I have been or do I just look only to immediate future? I've been stalling because I hate the idea of trying to prove that my child is eligible. I feel like I'm trying to get over on the system because I have to prove she is disabled. Maybe its just how I'm looking at. I don't know.... All I know is that I think we will have to do this to survive. I can't predict the future and I don't know what else we will be up against. It is defined somewhere in what I read that her condition would have to result in death. Just reading it made me just put the breaks. I don't want to think about things like that and prefer to stay positive. The government was going to make me look at it once again from the negative aspects of her health and being. Its sad that it comes to this. It makes me think back on all the times my mother had told me about applying for assistance. She said when you applied for welfare or food stamps even, you were asked everything and anything. She said it was as bad as asking you what color underwear you had. Nothing was personal about your life. It is ripped open from every possible way to steal whatever dignity and pride you had left. I guess that is what I personally had to do. Swallow my pride and do what was best for Jasmine and our family.
Anyways,on another note, she slept well last night, with no nightmares thankfully. She's been tossing and turning a lot, but its the gut wrenching cries that are so unbearable. She's inconsolable and the only thing that seems to calm her is twirling my hair. It hurts because she twists so hard. I guess she figures the harder she twists ,eventually she will feel it. Unfortunately, the hair is on my head and she doesn't realize it. In the morning, I will find that I have one or two things. The first is that I have lost some hair myself. The second being I have I have a huge knot in my hair. A small price to pay for my child's comfort in such a situation. As I have been told so many times, "it will grow back."
Saturday, November 6, 2010
Week 4: Saturday
Okay, so I reread my post from yesterday. It was brutally honest and it came from someone who was very tired. Its 9am right now. David is sleeping after just getting off from work and Jasmine is still sleeping. Jasmine and I went to bed at like 10:30 after much coaxing. I think I fell asleep before she did. Big mistake because I didn't give her the zofran (anti-nausea medicine). I got up to her crying hysterically at about 1am. She had gotten sick and swallowed again. Her crying was a testimony to her deep hate for getting sick. She was inconsolable. I tried to get her attention but she was thrashing around hitting me and pushing me away. It wasn''t until then that I realized she had never opened her eyes. She was having a nightmare and acting out parts of it. It took some time for me to get her calm. I turned on the tv as a distraction and she tried to crack open an eye. She was definitely having a nightmare. I was not going to waste another moment and decided to give her the medicine. Once again I upset her but it had to be done. I wanted her to hold down what she had eaten yesterday.
She just couldn't make out the difference between her dreams and reality. Our child is now traumatized. From what part of her treatment, I am not sure. I knew this would happen but just could not do anything about changing any of it. It all had to be done.
I think back about her most recent treatment and why my husband and I get so angry at each other. David is rightfully tired. He worked the night before and he never got more than 2 hours sleep. I, on the other hand, feel tired and frustrated. I feel the weight of my own "OCD habits" , as we call them here, 10 fold. I strive to make every situation as smooth as possible. Lots of thought and preparation go into every aspect of anything brought to my table. I stress myself out. This has always been part of my personality and makes me who I am. However, this personality trait does not work well with factors that are beyond my control. My daughter's sickness and health are out of my control. Its frustrating to watch and think about how I could improve her stay, her feeling and piece of mind. I guess what I've been doing is just taking it out on the next thing closest to me, my husband. Its just to easy because he's right there. It would take more energy for me stop myself from doing so. This was a vicious cycle. I'm sure we have not seen the last of it but hope we can withstand the results and possible damage.
I have to keep praying. There is a purpose in all this and something to take away from it when its over. I'm not sure what it is. I'm physically worn and mentally drained. I'm spilling out all that consumes my mind in these blogs. My hope is that it will give me the mental space needed to function and survive. I hope that.... wish Jasmine didn't have to go through this. I'm broken and in pieces. I need to get myself together before she gets up.
She just couldn't make out the difference between her dreams and reality. Our child is now traumatized. From what part of her treatment, I am not sure. I knew this would happen but just could not do anything about changing any of it. It all had to be done.
I think back about her most recent treatment and why my husband and I get so angry at each other. David is rightfully tired. He worked the night before and he never got more than 2 hours sleep. I, on the other hand, feel tired and frustrated. I feel the weight of my own "OCD habits" , as we call them here, 10 fold. I strive to make every situation as smooth as possible. Lots of thought and preparation go into every aspect of anything brought to my table. I stress myself out. This has always been part of my personality and makes me who I am. However, this personality trait does not work well with factors that are beyond my control. My daughter's sickness and health are out of my control. Its frustrating to watch and think about how I could improve her stay, her feeling and piece of mind. I guess what I've been doing is just taking it out on the next thing closest to me, my husband. Its just to easy because he's right there. It would take more energy for me stop myself from doing so. This was a vicious cycle. I'm sure we have not seen the last of it but hope we can withstand the results and possible damage.
I have to keep praying. There is a purpose in all this and something to take away from it when its over. I'm not sure what it is. I'm physically worn and mentally drained. I'm spilling out all that consumes my mind in these blogs. My hope is that it will give me the mental space needed to function and survive. I hope that.... wish Jasmine didn't have to go through this. I'm broken and in pieces. I need to get myself together before she gets up.
Friday, November 5, 2010
Week 4: Friday
It's hard to believe my last post was Sunday. I am very much tired but have to tend to my motherly duties. The week has been long and tough to bare.
Monday, we went to Georgetown University Hospital for a PET Scan and CT. Jasmine had to be sedated. How else would you get a 3 year old to sit still? David just got home from work just hours before I was trying to get him up. Of course, the bag I packed had a dissatisfying assortment of t-shirts and he went through and made some changes. I made sure to pack the car and get everyone out by 7am. I put the GPS to work and the arguing began from the passenger seat. I merely pulled out the driveway with no response. Yes, I was taking my final statement from my last post seriously. It wasn't until we got closer to DC traffic did it all begin again. All I could hear was "Stupid &*#@&@$ TomTom". Yes, the TomTom had us going in circles. We did get there as we scheduled we would but it was not easy due to traffic. There was roadwork everywhere we went. The hospital was nice but it took a while for them to get Jasmine sedated and scanned. The poor child had not eaten in several hours. I hate afternoon sedation. She did well for her sedation and scans. Everyone wondered why we were doing treatment in DC instead of UVA. We tried to put it nicely. "We were not satisfied with the information we received from the oncologist and decided to seek a second opinion", is what we said. I could feel the spark run through me when the subject was brought up and wanted to say so much more. I'm glad I kept my cool. After getting Jasmine to wake up we headed out into the traffic from hell. As before, the TomTom picked up just where it left off. No Signal. Which way were we supposed to turn? David told me to turn right and I asked why didn't I hear the gps. That was the last straw. David ranted profanities until I exploded myself. I let out a few of my own with a final SHUT UP. I told him it made no difference to me who was directing me anymore, I just wanted to get there in one piece. We had to go way over the other side of DC to the Ronald Mc Donald house. It's similar to going crosstown in NYC except the street grid makes no sense. It's no wonder why there are so many accidents in DC. The design is to fault much like the politicians who live there.
We finally made it through traffic and relied on the gps again after it had been resuscitated. Mind you, this didn't go without the occasional statement of negativity from my other half. " TomTom has us driving through the ghetto, " he said multiple times. There was some truth to it but what else could we have done. Should I get out and start asking for directions to have someone think of me as an easy target? Sure, why not, and get car jacked while I'm at it. It's only got 150000 miles on it. Best of luck trying to sell parts from a Hyundai.
Once we finally got to the Ronald McDonald House, the tension eased SLOWLY. We tried to unpack necessities and figure out what to do about dinner. We decided to order a pizza for dinner. David tried to catch up on some sleep while since he hadn't slept almost at all. Jasmine and I headed down to the kitchen to have some clear liquids and some crackers to start her diet up again. We played in the playroom for a little while and went back up to the room to watch some tv. The room was cold and the heat was not working. I changed her clothes to something warmer. When David got up we ordered food from a local place but that was another bomb in the making. What we ordered was incorrect. It was late and we had to call Dominos. Never again. It took a total of 1.5 hrs to get dinner for me and Jasmine. She ate half a medium dominos pizza all by herself. My girl had a healthy appetite. What can I say? She hadn't eaten in a while and she needed something on her stomach to start off her treatment.
First thing Tuesday morning and I was up taking a shower and kicking everyone out of bed. Yes, kicking them out of bed. It was cold again but we had to wash the sheets as part of the rules while staying. I ripped the sheets off and ran down to start the loads. I packed us up and cleaned the bathroom (another rule). We fixed ourselves a cup of coffee and made sure Jasmine ate something. David took out the kitchen trash. We were running behind schedule. The wash had taken longer than expected. I packed the car up and I told the person in charge that the wash was still going. I handed her off the key with our donation and thanked her.
We got in the car with our frozen gps again. This time I knew my way around a bit more. I'd been her before and remembered it. We got there in no time. I didn't accidentally run any lights and felt more comfortable. We checked in and off we went.
It started off smooth and we mentioned to the staff what drugs worked best for her nausea. It appeared Jasmine was one of the few that used these and the more common drug was ativan (did not work well for us last time). We asked them kindly to stick to this method around the clock. We knew she would be asleep for most of her stay with this combo but it worked better than the other. We experienced sickness once again. This time me and David both received some as well. Jasmine went through 2 changes of clothes in under an hour. She hated vomiting and so did we. Jasmine fought us many times. Her strength was unbelievable. She refused to sit up as we tried to force her up. She locked every joint and vertebrae to resist our efforts. On top of everything she insisted on holding it in as opposed to letting it out. Yes, she was swallowing her own vomit. She gritted her teeth after every time. It was horrible. I could never do that. The thought just seemed so painful. The girl was made of steel. Every once in awhile she would let one go. In an effort to catch her erratic spills, I followed her with a bucket while David held her. She kicked the bucket and it landed over David. Yeah, he was going to hate me for that one. I changed her sheets and it happened again. We needed help. We called for the nurse and they got on it. They finally gave us a gown for Jasmine. We got settled again with clean sheets, new gown, new shirts for me and David. I went to work in the bathroom trying wash out all that had been dirty. The clothes would be ruined and not make it if I didn't do it then. I rung out and hung what I could.
Interesting little fact that one of the nurses shared with us. We should have been using gloves to hand anything that had been vomited on as well as her diapers. Yes, I had to wear gloves while I changed my own child's diaper. I haven't done that since we went searching for her hearing aide battery.
After some sets of sickness throughout our stay, many staff members asked us if we wanted to try ativan. I said no every time. We stuck to our guns. We knew this combo was one for us and did not want to be steered in a different direction. The result of the other was horrific.
Thursday came around and we had finished her chemo the evening before. Now it was just waiting for IV fluids and nausea meds to continue. We had a plan from our wonderful nurse who came back from rounds. She asked the docs if we could bend the rules a bit and be out by 4:30. This would put us home by 8:30 maybe 9. I was thinking it was perfect timing. Until the residents changed shifts. Great. The plan was changed without us knowing. I had packed the car and got Jasmine's clothes ready thinking we would be leaving. Hell, we even got the paperwork started for discharge.
The resident walked in to propose her plan and I thought we were getting our final pat on the back. More like stab in the back. She wanted Jasmine to have a movement. Good Luck with that one. SHE HAS NOT EATEN IN 48HRS. Yes, her last movement was Sunday but she fasted on Monday. Monday she ate dinner and chucked it up on Tuesday. What goes in must come out, right? It did. What did she want back, Jasmine IV fluid? She had nothing more to give but fluid. Everyone said her belly was nice and soft and we should think about taking Miralax daily due to one of the chemo side effects. I was cool with that. I was running on E. My patience was wearing thin.
I realized that we chose this as the facility of treatment and praised the team, but this one came out of left field. I feel like a hypocrite for saying this but she had no idea what she was doing. Why traumatize my child with a suppository on top of what she has gone through? Her belly was fine. I think I know my child enough to know things in that department were okay. I guess what it comes down to is I am willing to listen to the advice of a medical professional but know that I don't have to take it. My motherly instincts just won't allow me to be a follower when it comes to my own child. Everyone respected that, why couldn't she? Why the sudden change? After she went through her speech of drinking colace or getting a suppository, I reminder her that she will not eat or drink. She basically left me with no other choice. I kindly reminder her that we had a 3 hr drive with a good chance of getting sick along the way and she might be adding an additional problem. That would be a good way to dehydrate my child.
After a few hours, we saw absolutely nothing. We left the hospital at 7pm. We got home at about 11. She got sick once along the way but it wasn't too bad. I started the wash as soon as we got in. I went to bed after I threw it in the dryer. I got my clothes ready for work and was in bed by 12:30.
It was a half day today and was manageable. I went to the bank and had to get Jasmine's prescription filled. When I got home, we got a visit from a friend with a care package. It was really nice. I still have yet to thank all those who have sent care packages with a thank you note. I have many to thank. For now, I will have to recoup.
Monday, we went to Georgetown University Hospital for a PET Scan and CT. Jasmine had to be sedated. How else would you get a 3 year old to sit still? David just got home from work just hours before I was trying to get him up. Of course, the bag I packed had a dissatisfying assortment of t-shirts and he went through and made some changes. I made sure to pack the car and get everyone out by 7am. I put the GPS to work and the arguing began from the passenger seat. I merely pulled out the driveway with no response. Yes, I was taking my final statement from my last post seriously. It wasn't until we got closer to DC traffic did it all begin again. All I could hear was "Stupid &*#@&@$ TomTom". Yes, the TomTom had us going in circles. We did get there as we scheduled we would but it was not easy due to traffic. There was roadwork everywhere we went. The hospital was nice but it took a while for them to get Jasmine sedated and scanned. The poor child had not eaten in several hours. I hate afternoon sedation. She did well for her sedation and scans. Everyone wondered why we were doing treatment in DC instead of UVA. We tried to put it nicely. "We were not satisfied with the information we received from the oncologist and decided to seek a second opinion", is what we said. I could feel the spark run through me when the subject was brought up and wanted to say so much more. I'm glad I kept my cool. After getting Jasmine to wake up we headed out into the traffic from hell. As before, the TomTom picked up just where it left off. No Signal. Which way were we supposed to turn? David told me to turn right and I asked why didn't I hear the gps. That was the last straw. David ranted profanities until I exploded myself. I let out a few of my own with a final SHUT UP. I told him it made no difference to me who was directing me anymore, I just wanted to get there in one piece. We had to go way over the other side of DC to the Ronald Mc Donald house. It's similar to going crosstown in NYC except the street grid makes no sense. It's no wonder why there are so many accidents in DC. The design is to fault much like the politicians who live there.
We finally made it through traffic and relied on the gps again after it had been resuscitated. Mind you, this didn't go without the occasional statement of negativity from my other half. " TomTom has us driving through the ghetto, " he said multiple times. There was some truth to it but what else could we have done. Should I get out and start asking for directions to have someone think of me as an easy target? Sure, why not, and get car jacked while I'm at it. It's only got 150000 miles on it. Best of luck trying to sell parts from a Hyundai.
Once we finally got to the Ronald McDonald House, the tension eased SLOWLY. We tried to unpack necessities and figure out what to do about dinner. We decided to order a pizza for dinner. David tried to catch up on some sleep while since he hadn't slept almost at all. Jasmine and I headed down to the kitchen to have some clear liquids and some crackers to start her diet up again. We played in the playroom for a little while and went back up to the room to watch some tv. The room was cold and the heat was not working. I changed her clothes to something warmer. When David got up we ordered food from a local place but that was another bomb in the making. What we ordered was incorrect. It was late and we had to call Dominos. Never again. It took a total of 1.5 hrs to get dinner for me and Jasmine. She ate half a medium dominos pizza all by herself. My girl had a healthy appetite. What can I say? She hadn't eaten in a while and she needed something on her stomach to start off her treatment.
First thing Tuesday morning and I was up taking a shower and kicking everyone out of bed. Yes, kicking them out of bed. It was cold again but we had to wash the sheets as part of the rules while staying. I ripped the sheets off and ran down to start the loads. I packed us up and cleaned the bathroom (another rule). We fixed ourselves a cup of coffee and made sure Jasmine ate something. David took out the kitchen trash. We were running behind schedule. The wash had taken longer than expected. I packed the car up and I told the person in charge that the wash was still going. I handed her off the key with our donation and thanked her.
We got in the car with our frozen gps again. This time I knew my way around a bit more. I'd been her before and remembered it. We got there in no time. I didn't accidentally run any lights and felt more comfortable. We checked in and off we went.
It started off smooth and we mentioned to the staff what drugs worked best for her nausea. It appeared Jasmine was one of the few that used these and the more common drug was ativan (did not work well for us last time). We asked them kindly to stick to this method around the clock. We knew she would be asleep for most of her stay with this combo but it worked better than the other. We experienced sickness once again. This time me and David both received some as well. Jasmine went through 2 changes of clothes in under an hour. She hated vomiting and so did we. Jasmine fought us many times. Her strength was unbelievable. She refused to sit up as we tried to force her up. She locked every joint and vertebrae to resist our efforts. On top of everything she insisted on holding it in as opposed to letting it out. Yes, she was swallowing her own vomit. She gritted her teeth after every time. It was horrible. I could never do that. The thought just seemed so painful. The girl was made of steel. Every once in awhile she would let one go. In an effort to catch her erratic spills, I followed her with a bucket while David held her. She kicked the bucket and it landed over David. Yeah, he was going to hate me for that one. I changed her sheets and it happened again. We needed help. We called for the nurse and they got on it. They finally gave us a gown for Jasmine. We got settled again with clean sheets, new gown, new shirts for me and David. I went to work in the bathroom trying wash out all that had been dirty. The clothes would be ruined and not make it if I didn't do it then. I rung out and hung what I could.
Interesting little fact that one of the nurses shared with us. We should have been using gloves to hand anything that had been vomited on as well as her diapers. Yes, I had to wear gloves while I changed my own child's diaper. I haven't done that since we went searching for her hearing aide battery.
After some sets of sickness throughout our stay, many staff members asked us if we wanted to try ativan. I said no every time. We stuck to our guns. We knew this combo was one for us and did not want to be steered in a different direction. The result of the other was horrific.
Thursday came around and we had finished her chemo the evening before. Now it was just waiting for IV fluids and nausea meds to continue. We had a plan from our wonderful nurse who came back from rounds. She asked the docs if we could bend the rules a bit and be out by 4:30. This would put us home by 8:30 maybe 9. I was thinking it was perfect timing. Until the residents changed shifts. Great. The plan was changed without us knowing. I had packed the car and got Jasmine's clothes ready thinking we would be leaving. Hell, we even got the paperwork started for discharge.
The resident walked in to propose her plan and I thought we were getting our final pat on the back. More like stab in the back. She wanted Jasmine to have a movement. Good Luck with that one. SHE HAS NOT EATEN IN 48HRS. Yes, her last movement was Sunday but she fasted on Monday. Monday she ate dinner and chucked it up on Tuesday. What goes in must come out, right? It did. What did she want back, Jasmine IV fluid? She had nothing more to give but fluid. Everyone said her belly was nice and soft and we should think about taking Miralax daily due to one of the chemo side effects. I was cool with that. I was running on E. My patience was wearing thin.
I realized that we chose this as the facility of treatment and praised the team, but this one came out of left field. I feel like a hypocrite for saying this but she had no idea what she was doing. Why traumatize my child with a suppository on top of what she has gone through? Her belly was fine. I think I know my child enough to know things in that department were okay. I guess what it comes down to is I am willing to listen to the advice of a medical professional but know that I don't have to take it. My motherly instincts just won't allow me to be a follower when it comes to my own child. Everyone respected that, why couldn't she? Why the sudden change? After she went through her speech of drinking colace or getting a suppository, I reminder her that she will not eat or drink. She basically left me with no other choice. I kindly reminder her that we had a 3 hr drive with a good chance of getting sick along the way and she might be adding an additional problem. That would be a good way to dehydrate my child.
After a few hours, we saw absolutely nothing. We left the hospital at 7pm. We got home at about 11. She got sick once along the way but it wasn't too bad. I started the wash as soon as we got in. I went to bed after I threw it in the dryer. I got my clothes ready for work and was in bed by 12:30.
It was a half day today and was manageable. I went to the bank and had to get Jasmine's prescription filled. When I got home, we got a visit from a friend with a care package. It was really nice. I still have yet to thank all those who have sent care packages with a thank you note. I have many to thank. For now, I will have to recoup.
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