I am so excited! I just noticed that Jasmine's eyelashes and eye brows are growing back. Oh how I've missed them so. She's always had the longest lashes and imagined she would never need mascara as she got older. Mostly, I'm happy for the things your eyelashes do naturally. I won't have to worry about the sun in her eyes as much. It has mad her eyes so much more sensitive. No more crusty sleep near the inside of her eyelids which is more difficult to wipe without rubbing the inside of her eye. Lashes protected her eyes from the bath suds. I can soon be rid of the looks from others as we go somewhere other than the hospital. It kills me sometimes the way people view her. Cancer doesn't come to mind when they first see her for some (the sheltered and self centered) they see an odd child. I'm very much aware of my surroundings and Jasmine is too, so the fact that there are adults who snicker and make fun of my daughter from a distance is disturbing. I watched a couple from a distance point and make fun. I could hear them coming in our direction and heard snickering as they turned the corner. They contained themselves to not make it as obvious but as they got closer they sobered up from their high school behavior. It was starting to register what they were laughing at. I realize my child looks different to others but I have no understanding for that kind of behavior from people my own age.
Well on a different note, I'm applying for the SSI in hopes to get medicaid. I'm starting to feel the panic of financial woe. It scares me. Its overwhelming. Its coming so quickly and I thought it would be more spaced out. Already we have found out that our insurance is for the birds but we are still glad to have it. The new plan is crappy. Our out of pocket has doubled regardless of what deductible you have. We have already run into our first issue only 3 weeks in. Our co pay for Jasmine's Neulasta is 700. That's 20% of the actual cost. She supposed to get this every 3 weeks. It's only one shot but she needs to have it. We could of course give her a shot everyday for the same cost. Do we even want to think about torturing her with multiple shots when she's already been through enough? Now we see the claims coming in for our responsibility coming in. No bill yet but we know what to expect. $4200 for our first bill this month. Lets see, we have until June until her chemo is over. LOVELY! Our out of pocket max is 10000. At this rate we will reach this by next month. Woo hoo! Am I worried? Yes. Do I think we can get through this without losing our house? I hope. I could really get into our financial business but lets just say like most American families these days, we have debt. Debt upon debt just doesn't mesh well. We pay our bills faithfully and try to pay it down. Advice to others never underestimate the element of surprise or the unpredictable. I hope that applying for this SSI and medicaid will help alleviate some of the long term financial stress. I thought last year was bad but this is a freaking nightmare.
Its bad enough to worry about the treatment and how she handles it, whether her scans will continue to be negative, and ultimately her future. I wish there was something out there like an easy button to dealing with cancer from every aspect and those affected by it. If there isn't a cure there should at least be that, right? I'm trying to live a normal life or try to make it as normal as I can when we are not dealing with the treatment directly. I can't help but think that I will regret trying to do everything as I have and more by sacrificing my time with Jasmine, if this does not end well. I feel like I should do my best and do things with her even more because I don't know what God's plan is for her. I think back to the the weeks after we found out she had cancer and before we started treatment. We went on family weekend vacation, just Jasmine, David and I. We didn't do anything extravagant. We stayed in state and just went to Williamsburg and walked the boardwalk along Virginia Beach. We took her to the aquarium and even brought a packed lunch with us. We didn't spend a lot because we stayed at a hotel for the night. It was a vacation weekend 3 hours from home but I think about how happy we all were. It was truly the best weekend ever and the happiest we had all been in a long time. It was Jasmine's first time to the beach. I love the beach and I think that she did too. I love her so much and.......
Her treatment went well last week the weather was the only thing I had not accounted for. We ended chemo early enough to get her Neulasta but had to wait to give her the shot due to insurance policies. We did have the option of staying at the Ronald McDonald house and getting the shot first thing in the morning, 8am. They were calling for snow at rush hour and I thought we would be okay because it looked more like rain. By the time we got the shot I hadn't looked out the window to see what was going on. We headed down to the main floor and saw what the fuss was about. Big mistake. We got in the car and tried to go home. It took us 3 hours to get down a stretch of 12 blocks maybe. What normally was a 10 minute drive even turned into 3 hours. It was terrible. We could not see out the front or the back of the car. The snow picked up and so did the accidents and traffic. People ran out of gas, their batteries went dead and people ditched their cars in the middle of HOV lanes on 395. By the time we were in Dale City area, we stopped and stayed the night at hotel. David's sister got us a room at the Best Western. I couldn't be more grateful for her swift action. The car was starting not do so well with the accumulation. It was a lot and the roads had not been treated. As much as I wanted to be home, I didn't want to risk our lives over it. Other drivers were a little too anxious to get where they were going. We ate vending machine food for dinner and had continental breakfast in the morning. It would have been a treat but Jasmine was not feeling all that good. Her medicine, which I'm glad I carried with me, did not go down so easy. We slept well but late into the morning. It took us 4 hours to get there and it was 10:30 before we even got settled in the hotel. I didn't realize how tense I was that night until I got up. My muscles were tired. We got home later that afternoon. Never again will I underestimate the weather.
Sunday, January 30, 2011
Sunday, January 23, 2011
Week 16: Sunday
David took Jasmine last Tuesday for her MRI of the brain and lab work. Her doctor called me to tell us that her MRI was negative and her lab counts looked good. I unfortunately was not feeling so great on this day. I started to come down with flu like symptoms. When David was on his way back from the trip we met up at Walmart to grab a couple of things we needed. I told David I wasn't feeling so hot. I actually felt like I was going to get sick. I had body aches earlier in the day but continued to work. By the time we were pretty much done shopping, Jasmine was in a good mood but I was having a hard time pretending like I was okay. I found David looking at some magazines and I told him I was leaving and checking out. I told him I was feeling really bad and had to go now. I took Jasmine with me and checked out. By the time I was in the car driving down the 10 mile stretch, I could feel it coming. I tried to keep it down and under control. I managed to get her and the bags out of the car and in the house. I darted for the bathroom and that was all she wrote. The rest of the evening I felt miserable. I wore a mask instantly to keep her from getting sick. I got her settled and out of her coat. I let the dogs out and went straight for the ginger ale. When David came home, I told him what happened and I just threw in a movie and laid down. I threw in a pot pie I had just bought. I ate that slowly and layed back down again. He took care of Jasmine the rest of the evening. I had to go to work the next day.
The next morning I felt a little better but brought the ginger ale with me. All I wanted to do was get my job done and leave. Nothing ever goes as planned though. I finally left an hour later than usual and still was not able to accomplish all that had to be done.
The rest of the week was just as miserable for many reasons. Its bad enough when you are sick because you already feel drawn of all your energy. It makes it virtually impossible to recoup when you have other sources sucking the energy from right under you. I think I have become settled with the fact that I can no longer handle being superwoman at this point. It is physically making me sick. The worst part of it all is that I don't know how to solve it. Everything is starting to pile up. The reality is starting to become so much clearer. I guess what I'm looking for now is an escape. I need to know that there is a silver lining in that cloud above me and that life will be what it once was for us. Even if its just for a short time. I'm speaking about this as if this is just me but I know that David has grown weary of our routine. It's tiring because it something you will never get used to and don't want to. This is the second job. As for Jasmine, her body has been wiped of everything time and time again. She's not like most kids her age. She doesn't know that having hair and playing pretend princess is fun. She still can't talk and still working on potty training. She has no friends or little buddies to play with. WE are here friends and play buddies. There is something very wrong with this. The whole picture is wrong. I'm looking for the solutions to too many problems. I've been trying to mask our problems by keeping my mind and body busy. IT has finally caught up with me. I've stopped blogging as much because I want to hide from the bitter reality and instead sunken my head into fictional books. Reading has helped keep my mind from dealing with my reality.
Well, on a lighter note, the school called and they will be setting up a teacher or therapist coming to help Jasmine at home. They will call us on Tuesday to let us know what the schedule will be. Monday is work, Tuesday and Wednesday is chemo and hopefully be back to work by Thursday afternoon. I'm still wearing a mask and will continue until my last symptom is gone. I don't want to compromise her health or David's.
The next morning I felt a little better but brought the ginger ale with me. All I wanted to do was get my job done and leave. Nothing ever goes as planned though. I finally left an hour later than usual and still was not able to accomplish all that had to be done.
The rest of the week was just as miserable for many reasons. Its bad enough when you are sick because you already feel drawn of all your energy. It makes it virtually impossible to recoup when you have other sources sucking the energy from right under you. I think I have become settled with the fact that I can no longer handle being superwoman at this point. It is physically making me sick. The worst part of it all is that I don't know how to solve it. Everything is starting to pile up. The reality is starting to become so much clearer. I guess what I'm looking for now is an escape. I need to know that there is a silver lining in that cloud above me and that life will be what it once was for us. Even if its just for a short time. I'm speaking about this as if this is just me but I know that David has grown weary of our routine. It's tiring because it something you will never get used to and don't want to. This is the second job. As for Jasmine, her body has been wiped of everything time and time again. She's not like most kids her age. She doesn't know that having hair and playing pretend princess is fun. She still can't talk and still working on potty training. She has no friends or little buddies to play with. WE are here friends and play buddies. There is something very wrong with this. The whole picture is wrong. I'm looking for the solutions to too many problems. I've been trying to mask our problems by keeping my mind and body busy. IT has finally caught up with me. I've stopped blogging as much because I want to hide from the bitter reality and instead sunken my head into fictional books. Reading has helped keep my mind from dealing with my reality.
Well, on a lighter note, the school called and they will be setting up a teacher or therapist coming to help Jasmine at home. They will call us on Tuesday to let us know what the schedule will be. Monday is work, Tuesday and Wednesday is chemo and hopefully be back to work by Thursday afternoon. I'm still wearing a mask and will continue until my last symptom is gone. I don't want to compromise her health or David's.
Week 15: Sunday
Last Tuesday we were supposed to head up to DC for our chemo follow up and blood work. They emailed David the evening before to let us know they had managed to get us in for our awaited MRI of the brain. Well, with the weather we and they were expecting, I figured there would be a cancellation or two. David and I just argued back and forth about whether to go or not. I thought it would be wise to cancel ahead and not play the guessing game. This was after all just a quick check up and blood work. The MRI was thrown in as after the fact. I had hoped that the weather would either pass us with out much doing but the forecast was so not telling. They were calling for ice and that's when I put my foot down. If this was her chemo treatment then I would say that we go up the night before and get a hotel or stay at Ronald McDonald. Anyways, after much aggravation and upset, David cancelled. There was no way we could have done so at 4:45 in the morning.
Anyways, Jasmine has been feeling pretty good. We kept her quarantined for the most part this week. We did very little outside. Many people are sick with the flu and I thought it would be best to keep her indoors until the 10 day Neulasta kicked in. She has expressed many times that she wanted to go out. She would take us to the door or bring shoes to us. We did go out once to get her blood work done and had dinner afterwards. It turned out to be a not so nice day. Jasmine fell asleep in the car and napped the whole way to the lab. When we got to the lab, we didn't have a write up to give to the tech. New laws in the state of Virginia that we could no longer use requests on file with PRN any longer. Now we would have to bring a new one each time. Go figure the one time we cancel and have to use the local lab for her ANC because we couldn't make the trip. We had never cancelled an appointment yet but now the theoretical (hence the reason for the PRN) was a reality. When she woke up during the fuss of trying to get a hold of a doctor or nurse from our team, she was have a bad meltdown. She had woke up to early from her nap and that can be seriously ugly. She had uncontrollable sobbing, screaming, and nearing hyperventilation. When it was all settled out, I took Jasmine back while David was finishing up on the phone with her doctor. I had never been back with Jasmine at the local lab. I knew they could not access her port and had to draw blood at a normal site. They knew her pretty well by now and tag teamed her. The only difference was she was very upset. With her free hand, Jasmine pounded it on the adjacent counter like an adult would slam their fist to emphasize their point. She kept on and then when it was all over she continued. When I told her it was all done and we could walk, she didn't walk. She stomped and marched out still crying. The tech said she was really mad today. I agreed but thought it was funny and cute for moment. She had never displayed such anger with this emphasize. She looked liked she should be giving an aerobic lesson with her knees coming up so high. HA! Its a site I will never forget.
We got her to stop crying, part way through our drive. We had to do two things, go to the dollar store for some carpet cleaner and then head off to dinner. I grabbed what I needed from the dollar store and headed to Pizza Hut.
When we got to Pizza Hut we got Jasmine milk for her drink. After much fussing and distraction from us, her meal came and she wanted to it as hot as it was. Of course, I stopped her because the last thing I wanted was to cause sores to start up her mouth. The healing factor is slowed tremendously due to the chemo. So I cut up her personal pizza a little more. In the meantime, she had been sucking down a milk. When she started to eat she realized she was all out and picked my hand up mid meal and put it on the milk. I grabbed it and realized it was empty. I tried to explain to her but she kept throwing my hand on the empty carton. She obviously wanted more but our waitress was no where to be found. I tried to give her some of my soda because I didn't want the girl to choke on all that she had eaten. She tried it and that was all she would have of that. She was so persistent about the milk until we flagged the waitress down and finally got her another. My kid REALLY likes milk, what can I say? I can at least say that she didn't give up on trying to communicate what she wanted.
After dinner we headed home, we had definitely made a day of it and fulfilled her need to go out. Next week we would have to go back to CNMC for her MRI and lab work.
Anyways, Jasmine has been feeling pretty good. We kept her quarantined for the most part this week. We did very little outside. Many people are sick with the flu and I thought it would be best to keep her indoors until the 10 day Neulasta kicked in. She has expressed many times that she wanted to go out. She would take us to the door or bring shoes to us. We did go out once to get her blood work done and had dinner afterwards. It turned out to be a not so nice day. Jasmine fell asleep in the car and napped the whole way to the lab. When we got to the lab, we didn't have a write up to give to the tech. New laws in the state of Virginia that we could no longer use requests on file with PRN any longer. Now we would have to bring a new one each time. Go figure the one time we cancel and have to use the local lab for her ANC because we couldn't make the trip. We had never cancelled an appointment yet but now the theoretical (hence the reason for the PRN) was a reality. When she woke up during the fuss of trying to get a hold of a doctor or nurse from our team, she was have a bad meltdown. She had woke up to early from her nap and that can be seriously ugly. She had uncontrollable sobbing, screaming, and nearing hyperventilation. When it was all settled out, I took Jasmine back while David was finishing up on the phone with her doctor. I had never been back with Jasmine at the local lab. I knew they could not access her port and had to draw blood at a normal site. They knew her pretty well by now and tag teamed her. The only difference was she was very upset. With her free hand, Jasmine pounded it on the adjacent counter like an adult would slam their fist to emphasize their point. She kept on and then when it was all over she continued. When I told her it was all done and we could walk, she didn't walk. She stomped and marched out still crying. The tech said she was really mad today. I agreed but thought it was funny and cute for moment. She had never displayed such anger with this emphasize. She looked liked she should be giving an aerobic lesson with her knees coming up so high. HA! Its a site I will never forget.
We got her to stop crying, part way through our drive. We had to do two things, go to the dollar store for some carpet cleaner and then head off to dinner. I grabbed what I needed from the dollar store and headed to Pizza Hut.
When we got to Pizza Hut we got Jasmine milk for her drink. After much fussing and distraction from us, her meal came and she wanted to it as hot as it was. Of course, I stopped her because the last thing I wanted was to cause sores to start up her mouth. The healing factor is slowed tremendously due to the chemo. So I cut up her personal pizza a little more. In the meantime, she had been sucking down a milk. When she started to eat she realized she was all out and picked my hand up mid meal and put it on the milk. I grabbed it and realized it was empty. I tried to explain to her but she kept throwing my hand on the empty carton. She obviously wanted more but our waitress was no where to be found. I tried to give her some of my soda because I didn't want the girl to choke on all that she had eaten. She tried it and that was all she would have of that. She was so persistent about the milk until we flagged the waitress down and finally got her another. My kid REALLY likes milk, what can I say? I can at least say that she didn't give up on trying to communicate what she wanted.
After dinner we headed home, we had definitely made a day of it and fulfilled her need to go out. Next week we would have to go back to CNMC for her MRI and lab work.
Saturday, January 8, 2011
Major Catch Up
Much has happened and where do I begin? HMMM?
Okay, so we spent Christmas Eve and Day at the hospital. It brought tears to my eyes at times. I was slightly depressed but it all changed. Jasmine had many visitors from people whom I've never met. People had dropped off gifts and books for the children who had to stay during the holiday. One group was from the American Cancer Society: The Madison Relay. They came in and asked if Jasmine would like a bear. I said she would and they presented the bear to her. She grabbed it questioningly. They asked if she could get a picture of Jasmine holding the bear with them. I okayed it and Jasmine hugged the woman. It instantly brought tears to my eyes. The other girl showed off her hat to Jasmine. It was a hat that was very animated and lite up. Jasmine was amazed and thrilled. I thanked them as they proceeded to leave. Jasmine threw a fit and started crying. I wish I didn't cry because maybe she wouldn't have. They felt bad about leaving too. The next was the nurse delivering a box full of all sorts of things. Coloring books, socks, a brand new stuffed animal of Tigger, and a puzzle. Of course Christmas morning came around and the night nurse told me that Santa usually flies in and delivers gifts. He did come and deliver a whole new set of toys all wrapped. I could not believe how much she got. I expected one gift of all the ones he was holding but not the load he dropped on her bed. I took a picture with my phone after I woke up from my aww shock. As he hurriedly posed, I snapped the shot, shut the phone and forgot to save. Either way, I'll never forget it and I know Jasmine was content throughout the day. We received some excellent news about going home a little bit later. David came and I told him the good news of being able to go home that afternoon. It turned out that we actually left in the evening but it was worth it.
It had started to snow but we had been through this number before. We just drove slow. When we got home we opened some of her presents, all except one. The dollhouse would have to be saved for the next day. There was way to much to try to put together for that evening.
Sunday came and I put the house together. It was a lot with very little directions to add to the situation. Poor David wasn't feeling well and he tried his best to keep clear of her. If he was home, Jasmine was going to want both our attention. He printed me out a large picture of it and I had to rely on my instinct. It was great. When we brought the house into her room, she was thrilled. David and her played while I took pictures. I was glad to have gotten it for her. It was a winner. This girl had more toys than we would have ever imagined for her Christmas.
This takes me to week 13. This past week was different because we got home a little earlier and they have started to drop some of her chemo drugs and lowered the amount from her regimen. This was kind of the real hump of her treatment. We still have the full 36 weeks which ends in June. I claimed to have been at the halfway mark much earlier. Apparently, my math is very off and it still is. However, this is a big deal even if I can't claim it still being the halfway mark in her treatment. This means technically, we would have one less day of chemo. Unfortunately, Jasmine had decided to put a wrench in it when most of the time its because of some hospital schedule issues. She decided to hold her urine and not put anything out during prehydration. I couldn't believe she did it again. Why couldn't she do this at home? She's so capable of being potty trained. It was absolutely ridiculous. We waited and waited....and waited..... Dear God, it took her til 10:30pm to let loose. Now we could start chemo. The day had passed but this means we would be leaving either very late the next day or the morning of the next.
The chemo went well but she was in a bad mood most of her stay. She was very irritable. I know she was frustrated with having to be there and go through this but you would think she would be used to it. She had officially lost all existing hair from her head, eyebrows and had few remaining lashes. Her skin had gone through the changes and her entire body knew it, so why the fuss? It was going to be a shorter stay that she unknowingly turned into a regular stay. I wish she could understand. She understood when it was time for us to leave and go to the art room. She was always up for a trip down the hall, to the playroom, art room, etc. The minute we got back to the doorway of her room she would breakdown. The nausea medicine did wonders as long as we could keep her from smelling or looking at food. The food cart would always be there when the art room was going to shutdown for lunch. The smell would engulf the whole floor. UGH! So gross. I will never understand why they put a cart of smelly food on a floor full of chemo patients not wanting to eat in general. If they did eat, it was minimal because they knew what it would set off sickness. Anyways, it was always a time that we had to go down the hall. We prayed every time we left the art room. First for no meltdowns when we scooted her out the door and the second for not getting sick. This time she voluntarily walked out on her own. That was a first. As they day progressed she got more upset with everything and my head was pounding. The pain was sort of unbearable at times. I felt like my vision was not so great either. Her meltdowns were not helping the matter.
When we left and got home, I felt terrible and she was full of energy. I took some more tylenol and slept until I couldn't sleep anymore. I had the opportunity to go to work for a bit but opted to take care of myself. Either way my vision seemed to be a little shotty, so driving was not a good idea. I actually should have let David take over the driving but I'm stubborn. I wonder where Jasmine gets that from? :) Jasmines mood was still off but she was home and she knew that.
The next day, things were back to normal. I was getting ready for work feeling much better and she ate her normal stuff and took her nasty medicine well. I worked my half a day and did some quick grocery shopping to get us through the weekend and part of the week.
Today, Jasmine has been super full of energy as usual. She has also managed to get into a lot more. She playing differently and learning how to do things that she shouldn't do. She has learned how to: open the oven, take my pot holder, figured out most electronics in the house (computer, David's DS, cellphones, VHS, DVD, remotes) and lets not forget how to empty all the clothing drawers in the house. She's learning to mock and imitate...this one just really gets me. In fact it amazes me. It seems like the moments I've been waiting for have finally arrived. She wants to actively participate and for us to be included in her setups. She's growing and developing again. She's getting older and her understand for somethings has taken off. I took her out after we played with her new ice cream playdoh machine, to get some real ice cream. What a hoot?! I tell her we are going to get some ice cream with rainbow sprinkles on it and she's ecstatic. She's flailing her arms and hands with a big old grin her face. I'm happy that she is happy but know this a long way to go for just a cup of ice cream. 20 miles for a cup of ice cream that she can picture. I get her shoes on and she waits for me to put mine on. I got to get her coat and she knows we are going out. She does not fuss but help me instead to put her coat on. We head out and on the road, the whole time I'm talking about the ice cream and I look back to always see a smile. I get to the exit and I turn around to find a sleeping Jasmine. GREAT! Well, I park the car to an empty parking lot as I expected on a VERY cold evening. I get Jasmine out of her car seat and tell her we are going in to get the ice cream with sprinkles. She awakens and she notices the picture on the window of a ice cream cone. When we go in, a teenage boy and girl come to the counter with big smiles. I order a small cup and get a heaping lot of ice cream on a cone. He asks me what kind of sprinkles and I told him rainbow. Jasmine watched everything from the ice cream coming out to the sprinkles being added with such attention. Shes flails her arms and hands, grins with excitement. In my head the music plays, "I"m so excited and I just can't hide it, I'm about to lose control and I think I like it," (Pointer Sisters). This was a great idea. The music in my head pics up with "La,la la,la,la...la,la,la,la,...." a part of,"Loving You" by Minnie Ripperton. We go to sit down at a small table in the corner. I let her have the first bite. She had some and then I can see how quickly it starts to melt. I go to give her a second go at it and she starts crying. I can't even get her to sit in the chair without falling over. Crap! I'm stuck eating this more than what I wanted ice cream. As a matter of fact I didn't even want ice cream. Wasted gas, an overpriced ice cream, a screaming child and YES an additional butt. What more could a woman ask for? At least I got a couple of really good smiles. The things we do as parents.
Well to close this long update, I'll say that I'm grateful that she has taken this chemo as long as she has so well. I am thankful that her scans are coming back negative. I'm grateful to all those who have donated to Amanda's Marathon Run (Jasmine being her cause), supported us, helped us, and prayed for us. I know we are still heading down the road and its not over yet, but its the close of a year that we will never forget. Both for its positivity and negativity, we are hopeful coming into the next because of the love and support of others around us, near and far.
Next long treatment, we start the genetic testing. David and I will get our blood drawn, be counseled in a few weeks and in a month have a complete work up. From CT, MRI, and physical. We hope to help find answers to the reason why Jasmine has come to have this cancer as well as others.
Okay, so we spent Christmas Eve and Day at the hospital. It brought tears to my eyes at times. I was slightly depressed but it all changed. Jasmine had many visitors from people whom I've never met. People had dropped off gifts and books for the children who had to stay during the holiday. One group was from the American Cancer Society: The Madison Relay. They came in and asked if Jasmine would like a bear. I said she would and they presented the bear to her. She grabbed it questioningly. They asked if she could get a picture of Jasmine holding the bear with them. I okayed it and Jasmine hugged the woman. It instantly brought tears to my eyes. The other girl showed off her hat to Jasmine. It was a hat that was very animated and lite up. Jasmine was amazed and thrilled. I thanked them as they proceeded to leave. Jasmine threw a fit and started crying. I wish I didn't cry because maybe she wouldn't have. They felt bad about leaving too. The next was the nurse delivering a box full of all sorts of things. Coloring books, socks, a brand new stuffed animal of Tigger, and a puzzle. Of course Christmas morning came around and the night nurse told me that Santa usually flies in and delivers gifts. He did come and deliver a whole new set of toys all wrapped. I could not believe how much she got. I expected one gift of all the ones he was holding but not the load he dropped on her bed. I took a picture with my phone after I woke up from my aww shock. As he hurriedly posed, I snapped the shot, shut the phone and forgot to save. Either way, I'll never forget it and I know Jasmine was content throughout the day. We received some excellent news about going home a little bit later. David came and I told him the good news of being able to go home that afternoon. It turned out that we actually left in the evening but it was worth it.
It had started to snow but we had been through this number before. We just drove slow. When we got home we opened some of her presents, all except one. The dollhouse would have to be saved for the next day. There was way to much to try to put together for that evening.
Sunday came and I put the house together. It was a lot with very little directions to add to the situation. Poor David wasn't feeling well and he tried his best to keep clear of her. If he was home, Jasmine was going to want both our attention. He printed me out a large picture of it and I had to rely on my instinct. It was great. When we brought the house into her room, she was thrilled. David and her played while I took pictures. I was glad to have gotten it for her. It was a winner. This girl had more toys than we would have ever imagined for her Christmas.
This takes me to week 13. This past week was different because we got home a little earlier and they have started to drop some of her chemo drugs and lowered the amount from her regimen. This was kind of the real hump of her treatment. We still have the full 36 weeks which ends in June. I claimed to have been at the halfway mark much earlier. Apparently, my math is very off and it still is. However, this is a big deal even if I can't claim it still being the halfway mark in her treatment. This means technically, we would have one less day of chemo. Unfortunately, Jasmine had decided to put a wrench in it when most of the time its because of some hospital schedule issues. She decided to hold her urine and not put anything out during prehydration. I couldn't believe she did it again. Why couldn't she do this at home? She's so capable of being potty trained. It was absolutely ridiculous. We waited and waited....and waited..... Dear God, it took her til 10:30pm to let loose. Now we could start chemo. The day had passed but this means we would be leaving either very late the next day or the morning of the next.
The chemo went well but she was in a bad mood most of her stay. She was very irritable. I know she was frustrated with having to be there and go through this but you would think she would be used to it. She had officially lost all existing hair from her head, eyebrows and had few remaining lashes. Her skin had gone through the changes and her entire body knew it, so why the fuss? It was going to be a shorter stay that she unknowingly turned into a regular stay. I wish she could understand. She understood when it was time for us to leave and go to the art room. She was always up for a trip down the hall, to the playroom, art room, etc. The minute we got back to the doorway of her room she would breakdown. The nausea medicine did wonders as long as we could keep her from smelling or looking at food. The food cart would always be there when the art room was going to shutdown for lunch. The smell would engulf the whole floor. UGH! So gross. I will never understand why they put a cart of smelly food on a floor full of chemo patients not wanting to eat in general. If they did eat, it was minimal because they knew what it would set off sickness. Anyways, it was always a time that we had to go down the hall. We prayed every time we left the art room. First for no meltdowns when we scooted her out the door and the second for not getting sick. This time she voluntarily walked out on her own. That was a first. As they day progressed she got more upset with everything and my head was pounding. The pain was sort of unbearable at times. I felt like my vision was not so great either. Her meltdowns were not helping the matter.
When we left and got home, I felt terrible and she was full of energy. I took some more tylenol and slept until I couldn't sleep anymore. I had the opportunity to go to work for a bit but opted to take care of myself. Either way my vision seemed to be a little shotty, so driving was not a good idea. I actually should have let David take over the driving but I'm stubborn. I wonder where Jasmine gets that from? :) Jasmines mood was still off but she was home and she knew that.
The next day, things were back to normal. I was getting ready for work feeling much better and she ate her normal stuff and took her nasty medicine well. I worked my half a day and did some quick grocery shopping to get us through the weekend and part of the week.
Today, Jasmine has been super full of energy as usual. She has also managed to get into a lot more. She playing differently and learning how to do things that she shouldn't do. She has learned how to: open the oven, take my pot holder, figured out most electronics in the house (computer, David's DS, cellphones, VHS, DVD, remotes) and lets not forget how to empty all the clothing drawers in the house. She's learning to mock and imitate...this one just really gets me. In fact it amazes me. It seems like the moments I've been waiting for have finally arrived. She wants to actively participate and for us to be included in her setups. She's growing and developing again. She's getting older and her understand for somethings has taken off. I took her out after we played with her new ice cream playdoh machine, to get some real ice cream. What a hoot?! I tell her we are going to get some ice cream with rainbow sprinkles on it and she's ecstatic. She's flailing her arms and hands with a big old grin her face. I'm happy that she is happy but know this a long way to go for just a cup of ice cream. 20 miles for a cup of ice cream that she can picture. I get her shoes on and she waits for me to put mine on. I got to get her coat and she knows we are going out. She does not fuss but help me instead to put her coat on. We head out and on the road, the whole time I'm talking about the ice cream and I look back to always see a smile. I get to the exit and I turn around to find a sleeping Jasmine. GREAT! Well, I park the car to an empty parking lot as I expected on a VERY cold evening. I get Jasmine out of her car seat and tell her we are going in to get the ice cream with sprinkles. She awakens and she notices the picture on the window of a ice cream cone. When we go in, a teenage boy and girl come to the counter with big smiles. I order a small cup and get a heaping lot of ice cream on a cone. He asks me what kind of sprinkles and I told him rainbow. Jasmine watched everything from the ice cream coming out to the sprinkles being added with such attention. Shes flails her arms and hands, grins with excitement. In my head the music plays, "I"m so excited and I just can't hide it, I'm about to lose control and I think I like it," (Pointer Sisters). This was a great idea. The music in my head pics up with "La,la la,la,la...la,la,la,la,...." a part of,"Loving You" by Minnie Ripperton. We go to sit down at a small table in the corner. I let her have the first bite. She had some and then I can see how quickly it starts to melt. I go to give her a second go at it and she starts crying. I can't even get her to sit in the chair without falling over. Crap! I'm stuck eating this more than what I wanted ice cream. As a matter of fact I didn't even want ice cream. Wasted gas, an overpriced ice cream, a screaming child and YES an additional butt. What more could a woman ask for? At least I got a couple of really good smiles. The things we do as parents.
Well to close this long update, I'll say that I'm grateful that she has taken this chemo as long as she has so well. I am thankful that her scans are coming back negative. I'm grateful to all those who have donated to Amanda's Marathon Run (Jasmine being her cause), supported us, helped us, and prayed for us. I know we are still heading down the road and its not over yet, but its the close of a year that we will never forget. Both for its positivity and negativity, we are hopeful coming into the next because of the love and support of others around us, near and far.
Next long treatment, we start the genetic testing. David and I will get our blood drawn, be counseled in a few weeks and in a month have a complete work up. From CT, MRI, and physical. We hope to help find answers to the reason why Jasmine has come to have this cancer as well as others.
Week 11: Friday
Its Christmas eve and we get to spend it at UVA. Yesterday Jasmine developed a fever early into the day. We called Children's in DC and they told us to get her to the local ER. With me getting over a cold, I knew I was part of the problem. We got the call Wednesday to let us know her labs showed she was neutrapenic. Once they told us this, all plans were canceled to leave home. We were planning things for everyday and even Christmas Day. We know that plans change like the weather. Especially for us. Our life lesson particularly focuses on this. It's never easy to swallow but at least we were local. D
I went home last night because I figured I would have to stay Friday evening for sure. David stayed with the her overnight. I was still sick and now the constant mask wearing was not helping. At home I could get away with using it when I was close to her. Here I have to wear it all the time because I'm confined in a room with her. David has to go into work today but was off for Christmas day. Our first time home together with Jasmine on a non treatment week. At least that was what I thought. I should tell myself not to think because its just a disappointment. I had really hoped that this one time we could celebrate this major holiday with people.
Sometimes I think we crave socialization and other times we are so tired we could care less. I know that for sure of myself. I feel like I have parted from the world on a social level and have condemned myself even at times when I didn't need to. I worry even when David wants to let someone watch Jasmine for a little while so we can go do something together. I don't know how to let go of her because she is on my mind constantly. Its a sick feeling. My whole world revolves around Jasmine. I don't mean this in a bad way. She is my life. I would make all and ever sacrifice necessary to do for her what ever she may need. I love spending time with her and wish I had more time. In fact I wish I could afford to be the stay at home mom sometimes. I'm jealous of the days that David gets to have with her and always have been. The school trips, the during the week events that I see advertised, I wish I could have been there. At the same time, I have to work and I know we need two incomes. Reality speaks louder to me now than it ever did.
So that was Christmas Eve. I wasn't exactly cheerful. I couldn't post because I didn't have internet at home. And had not had a decent speed to even view or log in.
I went home last night because I figured I would have to stay Friday evening for sure. David stayed with the her overnight. I was still sick and now the constant mask wearing was not helping. At home I could get away with using it when I was close to her. Here I have to wear it all the time because I'm confined in a room with her. David has to go into work today but was off for Christmas day. Our first time home together with Jasmine on a non treatment week. At least that was what I thought. I should tell myself not to think because its just a disappointment. I had really hoped that this one time we could celebrate this major holiday with people.
Sometimes I think we crave socialization and other times we are so tired we could care less. I know that for sure of myself. I feel like I have parted from the world on a social level and have condemned myself even at times when I didn't need to. I worry even when David wants to let someone watch Jasmine for a little while so we can go do something together. I don't know how to let go of her because she is on my mind constantly. Its a sick feeling. My whole world revolves around Jasmine. I don't mean this in a bad way. She is my life. I would make all and ever sacrifice necessary to do for her what ever she may need. I love spending time with her and wish I had more time. In fact I wish I could afford to be the stay at home mom sometimes. I'm jealous of the days that David gets to have with her and always have been. The school trips, the during the week events that I see advertised, I wish I could have been there. At the same time, I have to work and I know we need two incomes. Reality speaks louder to me now than it ever did.
So that was Christmas Eve. I wasn't exactly cheerful. I couldn't post because I didn't have internet at home. And had not had a decent speed to even view or log in.
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