Yesterday's trip to the clinic was actually a short one. It was a very nice break! What was soooo nice about it was we didn't have to be there until 10AM. This was very helpful because with getting the kids off on the bus and having everything ready to go, I still had time to get Benson to take his antibiotics and do a nebulizer treatment before we had to leave.
Kayla did very well with putting her "sleepy cream" on. It was the first time that Bryson didn't have to hold her down. She let me do it all by myself and just held still. This was definite progress. She still doesn't like it because it is cold, but that is one less fight we are dealing with now. :)
We dropped Benson off at a friend's house and headed to the MSTI clinic. Kayla did so well with her port access. She wasn't happy about it, but she didn't even cry. Just a little whimper was all. Nice....fight #2 is getting better.
They absolutely HAD to get her height, though, since she has never let the nurse get it before. Kayla wanted me to hold her, but that doesn't work with height like it does with weight. ;) So, after about 10 minutes of trying to convince her to stand straight against the wall (it's really not THAT difficult) we took her into an exam room, held her down on the bed and they marked her feet and head like they do to measure babies.
Then, Kayla screamed the amazingly ear-piercing scream that she has that literally rattles my ear drum (and everyone else's within a 1/2 mile radius).
And then we were good. :) We waited in the room to talk to Marnie, the NP. I asked her about kiddie pools. With it being so hot, the kids have wanted to go swimming or run through the sprinklers. We can't use the regular sprinklers that water our grass because it's irrigation water. But, we can use a sprinkler on a hose from the house. I did want to get a little pool to put in the yard, but Marnie said that anything with standing warm water was a breeding ground for growing bacteria and probably wasn't a good idea. Bummer.
Kayla did good getting examined and then we went into the chemo suite. She was only getting the vincristine, so we were only there for about a half hour. She didn't need any extra fluids and the vincristine only takes about 10 minutes. So, then we were done and ready to go home!
It was nice to have another short day. Next week, and most weeks will be the all day visits, but every once in a while we will get a break. I haven't looked closely at the schedule since she started, but I have a sheet with all 60 weeks mapped out. I'll have to check that out again.
Friday, April 27, 2012
Great Friends
On Wednesday my wonderful visiting teachers came over with bagfuls of goodies. They had sent an email asking if anyone wanted to help out to make our Thursdays at the clinic a little better. So, in they came with all of this stuff! Snacks, toys, games, coloring, and just about everything else you can think of were now sitting in our kitchen. THANK YOU to all of my wonderful Relief Society sisters. They never fail to fill any kind of need that arises. I am not used to being on the receiving end of things but it has filled me with the love and spirit of my sisters.
Kayla has been very excited about everything. It was seriously like Christmas morning around here!
Thanks, again, everyone!
Tuesday, April 24, 2012
A Day of Doctors
Well, yesterday I was able to go to my first appointment for my pregnancy. I am 16 weeks today. I have a feeling this is going to go by really fast. Especially since my second visit will be the ultrasound. The kids keep asking me if it is a girl or a boy . . . Kayla does at least two or three times a day. For her sake, I hope it is a girl. She has been coming up with all sorts of girl names and talks about when the girl baby comes out and saving clothes for when they will fit the girl baby. :)
Everything is great and looking right on schedule for me. My due date is October 9th. Luckily, my pregnancies are pretty smooth and easy. I don't think I could handle any complications right now anyway. :)
So that is how I spent my morning. Bryson was able to stay home with the kids and leave for work when I got back. It has been very handy to have him self-employed.
The afternoon is another story. . .
First I'll give a little background. Benson woke up with a runny nose (eek) on Saturday. Sunday, right as I got to church with the kids (Bryson and I take turns staying home with Kayla) he started coughing. With a runny nose and a yucky cough, I was going to feel really bad taking him to nursery, so I took him back home to Bryson.
Sunday night, Benson kept waking up . . . almost every hour from when I put him down at 7PM. Once when I went in to check on him at around 2AM or sometime around that and he was throwing up. Great. So, I stayed in his room the rest of the night while he tossed and turned and threw up about 4 or 5 more times. He wasn't feverish, but what worried me was his shallow, wheezy breathing. He finally settled down and seemed to be done throwing up and ready to just sleep some more about 7AM, so I got up and got ready to go to my doctor's appointment and went to it.
When I got back, Benson was just waking up. He was pretty lethargic and his breathing was still shallow and wheezy. So, I called and made him a doctor's appointment for that afternoon.
At the doctor's office, we saw the nurse practitioner because our doctor was already booked for the day. Benson was crying and screaming throughout the entire visit, so the nurse didn't get a good listen to his breathing, but was able to tell there was an ear infection. When she was done trying to examine him, she gave him a sucker and he stopped crying right away. (We should have started with that). Anyway, she got a quick listen to his breathing before he started crying again and decided that he needed chest x-rays. Great.
So, we went down to the lab and took x-rays. We had to wait for a little bit for 2 nurses to help hold him down because I couldn't be back there with him (pregnancy). When that was over, we went back to the room and waited for the results. The nurse came in and said that it wasn't pneumonia (yay) but that it was bronchiolitis (not good). So, she prescribed a nebulizer (I'm pretty sure I spelled that wrong) and antibiotics.
While we were there, our regular pediatrician came in to see us. He saw that we were on the schedule and wanted to check in and see how Kayla was doing. I thought that was really nice of him. He had called us while we were in the hospital at the beginning of all this to say that they were thinking about and praying for us. What a great doctor!
Anyway, we did a nebulizer treatment before we left the office because Benson's breathing was so bad. It really helped him a lot. Despite all of the crying and screaming, when we left, he waved and said bye-bye to the nurses. Then we went down to the basement where Norco was and got the nebulizer and we were finally going home. We had to stop at Walgreen's for his prescriptions first and by the time we got home, he was pretty happy and fairly normal. Now the challenge would be to keep him away from Kayla!
He slept all night last night (yay!) and has been doing great today. I have done some more nebulizer treatments on him that have helped and if I bribe him with a treat, he will take his antibiotics (although when he sees them he immediately pushes them away and says, "Yuck!"). So far Kayla has been good, so lets pray she doesn't get sick!
Everything is great and looking right on schedule for me. My due date is October 9th. Luckily, my pregnancies are pretty smooth and easy. I don't think I could handle any complications right now anyway. :)
So that is how I spent my morning. Bryson was able to stay home with the kids and leave for work when I got back. It has been very handy to have him self-employed.
The afternoon is another story. . .
First I'll give a little background. Benson woke up with a runny nose (eek) on Saturday. Sunday, right as I got to church with the kids (Bryson and I take turns staying home with Kayla) he started coughing. With a runny nose and a yucky cough, I was going to feel really bad taking him to nursery, so I took him back home to Bryson.
Sunday night, Benson kept waking up . . . almost every hour from when I put him down at 7PM. Once when I went in to check on him at around 2AM or sometime around that and he was throwing up. Great. So, I stayed in his room the rest of the night while he tossed and turned and threw up about 4 or 5 more times. He wasn't feverish, but what worried me was his shallow, wheezy breathing. He finally settled down and seemed to be done throwing up and ready to just sleep some more about 7AM, so I got up and got ready to go to my doctor's appointment and went to it.
When I got back, Benson was just waking up. He was pretty lethargic and his breathing was still shallow and wheezy. So, I called and made him a doctor's appointment for that afternoon.
At the doctor's office, we saw the nurse practitioner because our doctor was already booked for the day. Benson was crying and screaming throughout the entire visit, so the nurse didn't get a good listen to his breathing, but was able to tell there was an ear infection. When she was done trying to examine him, she gave him a sucker and he stopped crying right away. (We should have started with that). Anyway, she got a quick listen to his breathing before he started crying again and decided that he needed chest x-rays. Great.
So, we went down to the lab and took x-rays. We had to wait for a little bit for 2 nurses to help hold him down because I couldn't be back there with him (pregnancy). When that was over, we went back to the room and waited for the results. The nurse came in and said that it wasn't pneumonia (yay) but that it was bronchiolitis (not good). So, she prescribed a nebulizer (I'm pretty sure I spelled that wrong) and antibiotics.
While we were there, our regular pediatrician came in to see us. He saw that we were on the schedule and wanted to check in and see how Kayla was doing. I thought that was really nice of him. He had called us while we were in the hospital at the beginning of all this to say that they were thinking about and praying for us. What a great doctor!
Anyway, we did a nebulizer treatment before we left the office because Benson's breathing was so bad. It really helped him a lot. Despite all of the crying and screaming, when we left, he waved and said bye-bye to the nurses. Then we went down to the basement where Norco was and got the nebulizer and we were finally going home. We had to stop at Walgreen's for his prescriptions first and by the time we got home, he was pretty happy and fairly normal. Now the challenge would be to keep him away from Kayla!
He slept all night last night (yay!) and has been doing great today. I have done some more nebulizer treatments on him that have helped and if I bribe him with a treat, he will take his antibiotics (although when he sees them he immediately pushes them away and says, "Yuck!"). So far Kayla has been good, so lets pray she doesn't get sick!
Thursday, April 19, 2012
April 19th (Treatment #5)
Each week that we have gone to the clinic has improved. This morning when we woke Kayla up to put on her "sleepy cream" she knew what needed to be done, but wanted to do it downstairs. It was still a little struggle, but not too bad.
We got Nathan and Lily on the bus and then dropped Benson off at a friend's house. Kayla was tired so she slept in the car on the way to the clinic. She did great getting her blood pressure and weight (with me holding her still). She did really well getting her port accessed, too. Still a little struggle, but definite improvement.
We talked to the nurse practitioner (Marnie) and Kayla did great. She is starting to answer her questions and didn't fight when she examined her. She was pretty happy the whole time.
I asked Marnie questions like is going to the library okay?
- She said it is one of those risks that we can decide if it is worth it or not. We actually went the other day and just got a couple of books and I wiped them off with a Purell wipe (thanks, Cori--I take them everywhere!). I will probably try to avoid going during busy times and not check out too many books if I can help it.
Another question was about gardening. She shouldn't play in the dirt at all, but she can help plant as long as she wears socks and shoes and changes her socks and shoes when she is done. We have to be REALLY careful about mold and fungus. It's one of those things that if she gets contaminated by it, it could turn into a life and death situation.
One thing that the doctor and nurse have been trying to work out is dental work. Kayla has a couple pretty nice cavities that I was waiting to take care of until she felt better. Well, now it complicates things. Marnie told us today that they are hoping to get it scheduled for sometime in the next two weeks. They need to schedule with the dentist (a certain one that has privileges at St. Luke's) and Dr. Lee (the ophthalmologist) so they can all do their thing while she is out. This might be tricky, but I am hoping to get a phone call this week or next week so we can get this done.
A cub scout troop donated these really cute homemade bags full of fun things for the chemo patients. Our friend, Jenn, the child life specialist, came in and gave one to Kayla. It was full of crayons, coloring pages, stickers, a crown (see pictures below), rings, squinkies, pencils and an eraser. It also had a card where each member of the troop signed the card and it had a picture of them inside. This was such a neat thing for her.
Here's a picture of her today:
She is only getting one of the drugs, so our visit is significantly shorter (hooray!) She is also getting the Pentamadine (antibiotic) which has given her a yucky taste in her mouth, so she has been sucking on dum dum suckers and trying to hide the taste.
Our appointment was at 8:30AM again this morning, but we should be leaving before noon (it's 11:23AM right now). 5 down, 55 to go!
Tuesday, April 17, 2012
A Great Big Thank You!
I think I am pretty much up to date! Yay! I will be updating regularly on Kayla's progress and treatments as well as other family stuff. Thanks for all of your support and for taking the time to read this giant book I am writing.
The one thing I haven't mentioned is how much help and service we have received this past month. I have had so many dinners brought in by friends in our ward that I have hardly had to cook. Family members and friends have been mailing gifts for Kayla and the family which we have greatly appreciated. Some of my in-laws are paying for weekly house cleaning to help me out. It has been a huge blessing to have my bathrooms scrubbed down each week! And, it is a good friend of mine and avid cleaner who is doing it.
Bryson and I were talking about what we should do with our chickens. Kayla isn't supposed to be around farm animals and they didn't even want her checking for eggs, so we were trying to figure out if we should have fresh chicken for Easter dinner, or do something else with them for the next year. The very next day a friend in our ward called me and asked if we would want them to take our chickens for the year. They came and picked them up, along with our coop and took them home with them. They call themselves the "chicken tenders." :)
So many friends have watched my kids and many more have offered to help! I know I will have no problem each week finding someone to take Benson for the day on Thursdays, or Nathan and Lily after school. I have even had friends come over to pick up my laundry (unfortunately, I had just finished folding it! ).
Several friends have been making hats for Kayla and we love that. A quick hair update: it has been 4 weeks now since her first treatment and her hair has not even started to thin out! They told me to expect it at 2 weeks, but we have been blessed so far! I will take it for as long as we can keep it.
We have had so much support and even more prayers from those of you who are too far away to help out and even those of you who don't know us! We are so grateful for how blessed we are with wonderful family and friends. I feel truly strengthened by all of your support. I know that the Lord won't give me something that I can't handle, but if it weren't for all of you, I would definitely be having a pretty hard time right now.
THANK YOU!!!
The one thing I haven't mentioned is how much help and service we have received this past month. I have had so many dinners brought in by friends in our ward that I have hardly had to cook. Family members and friends have been mailing gifts for Kayla and the family which we have greatly appreciated. Some of my in-laws are paying for weekly house cleaning to help me out. It has been a huge blessing to have my bathrooms scrubbed down each week! And, it is a good friend of mine and avid cleaner who is doing it.
Bryson and I were talking about what we should do with our chickens. Kayla isn't supposed to be around farm animals and they didn't even want her checking for eggs, so we were trying to figure out if we should have fresh chicken for Easter dinner, or do something else with them for the next year. The very next day a friend in our ward called me and asked if we would want them to take our chickens for the year. They came and picked them up, along with our coop and took them home with them. They call themselves the "chicken tenders." :)
So many friends have watched my kids and many more have offered to help! I know I will have no problem each week finding someone to take Benson for the day on Thursdays, or Nathan and Lily after school. I have even had friends come over to pick up my laundry (unfortunately, I had just finished folding it! ).
Several friends have been making hats for Kayla and we love that. A quick hair update: it has been 4 weeks now since her first treatment and her hair has not even started to thin out! They told me to expect it at 2 weeks, but we have been blessed so far! I will take it for as long as we can keep it.
We have had so much support and even more prayers from those of you who are too far away to help out and even those of you who don't know us! We are so grateful for how blessed we are with wonderful family and friends. I feel truly strengthened by all of your support. I know that the Lord won't give me something that I can't handle, but if it weren't for all of you, I would definitely be having a pretty hard time right now.
THANK YOU!!!
Our Visits to the Clinic
For this next post, I thought I would combine our last three visits to the MSTI clinic where she gets her treatments. They were all pretty similar.
First of all, we have to put the numbing cream on her port two hours before our appointment time. Our appointment is at 8:30AM, so at 6:30AM, I get up, put a large amount of cream in the middle of a square of Glad Press and Seal and put tape around the edges of the wrap. Bryson helps to hold her down and I put the whole thing on as quickly as possible. It is cold to her and she doesn't like being woken up that way--and I don't blame her!
We get Nathan and Lily on the bus at 7:10AM and then quickly get everything ready to go. We drop Benson off at a friend's house and try to be on the road by 7:45AM. We have to go to downtown Boise, right next to St. Luke's, so it takes a good 45 minutes with the morning traffic.
When we get there, we check in and wait to be called back. The nurse takes her blood pressure and weight (by her weight, I mean I hold her and stand on the scale and then Bryson holds her while I get weighed so they can get her weight). On our first visit, she would not let go of me and screamed the whole time I was getting weighed. She did much better the next two times, but I still have to hold her. They have yet to get her height--she will not stand next to the wall, so I just tell them her height from the hospital the one time we were able to get it.
Then we go back into the waiting room until another nurse calls us back. This time they take us back to access her port. This is still a big struggle. Kayla holds on to me soooooo tight that I can hardly turn her around so her chest is facing them. Bryson has to hold her legs down as she tries to kick, I try to keep her arms around my neck so the nurses can lift up her shirt, take off the Press and Seal and tape, wipe off the cream, and stick a needle into her port that is attached to tubes which they then secure with a huge square of tape (by the way, aside from medicine, tape is her next biggest dislike) - the tubes then connect to the IV that is on a pole with wheels so she can get around. Whew. The first couple times were especially ear piercing. . . Kayla has a very high-pitched scream. This last time was a little better. She still cried, but several of the nurses out in the hallway commented on how well she had done because they hadn't heard her screaming.
After that whole ordeal, she gets a gold token to put in a little machine to get a toy.
Next, we got in to meet with either the doctor or nurse practitioner. They (try to) examine her, ask us questions, we ask them questions, etc. This is where Dr. Hanson told us about the other options to Septra. There is a breathing treatment that she could do once a month of Pentamadine (I am probably wrong on the name and the spelling, but it is something like that). This would mean putting a mask on her and having her breath in air that puts a horrible taste in her mouth for 5 minutes. Yeah. . . right. The other option is an IV form of Pentamadine. Ding ding! The only major downside to this is that it is the LEAST effective method to prevent the pneumonia. . . BUT, it is better than nothing and since she is getting nothing, we are going to start with that.
After our meeting there, we go into the chemotherapy suite (nice name, huh?) and get all settled into a little corner with a bed, TV and a couple of chairs. They have a cupboard full of movies, a music lady who comes and shares her cool instruments, a Child Life specialist who brings crafts for Kayla to do and makes sure we have what we need. She gets to order lunch, which is usually Mac n Cheese, grapes, and root beer. And then we just sit and wait and try to keep her entertained.
When we come each week, I feel like I am packing up half the house. :) First, I am trying to bring things that will keep her busy and entertained all day, then I am packing food to last all day for a hungry pregnant lady and her hubby. Plus, Kayla seems to be hungry all day on these days, too. She ends up going through all my food before we are even halfway done. So, by the end of the day, we are pretty much just tired and hungry.
In the meantime, another nurse comes every now and then to change her IV from fluids to each of the two chemo drugs and then back to more fluids. Oh, and they always give her IV Zofran at the beginning and at the end (which means we have to be there for 6 hours in between doses).
On our first visit, they just gave her the initial dose of Zofran and we went home when her fluids were all done. But, she woke up throwing up at 4AM the next morning and was going strong until noon. I almost had to bring her back into the clinic to get hooked up again and get IV Zofran, because, of course, she would rather be throwing up than take a tiny little dissolvable tablet. I did put one in the middle of a Starburst and gave it to her. She chewed it for a few seconds until she realized it tasted bad and ran for the garbage can. I tried to block her and then she just spit it out on the floor. I think she got a little bit of it in her, though, because she stopped throwing up after that.
So, on the following two visits, we made sure to stay long enough to get a second dose of Zofran through her IV. She seems to do fine with two doses.
It is normally around 3:30PM when we are finally leaving the clinic to head home. What a day! This will be what every Thursday is like for the next. . . 56 weeks.
First of all, we have to put the numbing cream on her port two hours before our appointment time. Our appointment is at 8:30AM, so at 6:30AM, I get up, put a large amount of cream in the middle of a square of Glad Press and Seal and put tape around the edges of the wrap. Bryson helps to hold her down and I put the whole thing on as quickly as possible. It is cold to her and she doesn't like being woken up that way--and I don't blame her!
We get Nathan and Lily on the bus at 7:10AM and then quickly get everything ready to go. We drop Benson off at a friend's house and try to be on the road by 7:45AM. We have to go to downtown Boise, right next to St. Luke's, so it takes a good 45 minutes with the morning traffic.
When we get there, we check in and wait to be called back. The nurse takes her blood pressure and weight (by her weight, I mean I hold her and stand on the scale and then Bryson holds her while I get weighed so they can get her weight). On our first visit, she would not let go of me and screamed the whole time I was getting weighed. She did much better the next two times, but I still have to hold her. They have yet to get her height--she will not stand next to the wall, so I just tell them her height from the hospital the one time we were able to get it.
Then we go back into the waiting room until another nurse calls us back. This time they take us back to access her port. This is still a big struggle. Kayla holds on to me soooooo tight that I can hardly turn her around so her chest is facing them. Bryson has to hold her legs down as she tries to kick, I try to keep her arms around my neck so the nurses can lift up her shirt, take off the Press and Seal and tape, wipe off the cream, and stick a needle into her port that is attached to tubes which they then secure with a huge square of tape (by the way, aside from medicine, tape is her next biggest dislike) - the tubes then connect to the IV that is on a pole with wheels so she can get around. Whew. The first couple times were especially ear piercing. . . Kayla has a very high-pitched scream. This last time was a little better. She still cried, but several of the nurses out in the hallway commented on how well she had done because they hadn't heard her screaming.
After that whole ordeal, she gets a gold token to put in a little machine to get a toy.
Next, we got in to meet with either the doctor or nurse practitioner. They (try to) examine her, ask us questions, we ask them questions, etc. This is where Dr. Hanson told us about the other options to Septra. There is a breathing treatment that she could do once a month of Pentamadine (I am probably wrong on the name and the spelling, but it is something like that). This would mean putting a mask on her and having her breath in air that puts a horrible taste in her mouth for 5 minutes. Yeah. . . right. The other option is an IV form of Pentamadine. Ding ding! The only major downside to this is that it is the LEAST effective method to prevent the pneumonia. . . BUT, it is better than nothing and since she is getting nothing, we are going to start with that.
After our meeting there, we go into the chemotherapy suite (nice name, huh?) and get all settled into a little corner with a bed, TV and a couple of chairs. They have a cupboard full of movies, a music lady who comes and shares her cool instruments, a Child Life specialist who brings crafts for Kayla to do and makes sure we have what we need. She gets to order lunch, which is usually Mac n Cheese, grapes, and root beer. And then we just sit and wait and try to keep her entertained.
When we come each week, I feel like I am packing up half the house. :) First, I am trying to bring things that will keep her busy and entertained all day, then I am packing food to last all day for a hungry pregnant lady and her hubby. Plus, Kayla seems to be hungry all day on these days, too. She ends up going through all my food before we are even halfway done. So, by the end of the day, we are pretty much just tired and hungry.
In the meantime, another nurse comes every now and then to change her IV from fluids to each of the two chemo drugs and then back to more fluids. Oh, and they always give her IV Zofran at the beginning and at the end (which means we have to be there for 6 hours in between doses).
On our first visit, they just gave her the initial dose of Zofran and we went home when her fluids were all done. But, she woke up throwing up at 4AM the next morning and was going strong until noon. I almost had to bring her back into the clinic to get hooked up again and get IV Zofran, because, of course, she would rather be throwing up than take a tiny little dissolvable tablet. I did put one in the middle of a Starburst and gave it to her. She chewed it for a few seconds until she realized it tasted bad and ran for the garbage can. I tried to block her and then she just spit it out on the floor. I think she got a little bit of it in her, though, because she stopped throwing up after that.
So, on the following two visits, we made sure to stay long enough to get a second dose of Zofran through her IV. She seems to do fine with two doses.
It is normally around 3:30PM when we are finally leaving the clinic to head home. What a day! This will be what every Thursday is like for the next. . . 56 weeks.
Our Struggles with Medicine. . .
Many of you, especially if you are on Facebook, have known that Kayla will not take oral medication. Sigh. She has four prescriptions:
Our first Saturday trying to give her the liquid antibiotic was very exhausting to say the least. I started out trying to be sneaky. First, I put it in raspberry kefir. Kefir is a drinkable yogurt that has a very tart taste. I was sure that this would work. She took one sip and pushed it away saying it was gross and that she wanted strawberry kefir. So, I put a second dose in the strawberry kefir. I got the same reaction. Next I tried root beer. Nope. Root beer with ice. Nope. Bryson made popcicles out of it. Nope. I tried coaxing and bribing. Nope. Later on that day, we tried the force method. That resulted in her throwing up immediately afterwards. I was kind of at a loss.
I called the doctor and was told to take a break for a day and then try again. Okay. So, I did. The next day I tried cranberry juice. Nope. I put it in chocolate milk. Nope. Hot chocolate. Nope. Chocolate ice cream with chocolate syrup. Nope. I tried telling her that if she wouldn't take them, we would have to go back to the hospital and maybe even get a shot. We even got in the car. She would give in, but before actually taking it, she would change her mind and we'd be back at square one.
So, I had a big present I had found on clearance and was saving for the girls for Christmas. I got it out, set it up, showed her how cool it was and told her that if she would take her medicine, she could play with it and have it. She was very excited about it, but still said, "I'll wait until Christmas to play with it."
I called the nurse and got a new prescription for the pill form of septra. I crushed it up and put it in applesauce with a lot of cinnamon and sugar. She took a few bites, but still said it tasted gross (by the way, I never told her when I was putting it in something). I couldn't get her to eat any more. She was seriously screaming crying for over an hour while I was trying to convince her that she had to eat it.
The next day, I crushed up another pill and cooked it in an omelet. I put it in half of the omelet. She took one bite and ran to the garbage to spit it out because it tasted gross. She ate the other half of the omelet just fine. I now was at a complete loss of how to get this stubborn girl to take her meds--which were now more than half gone. . .
Well, I will continue this on in another post to update you on what is happening. On a happy note, she can't even tell when I put Miralax in her water and has had no problem with that! :)
- Septra: an antibiotic to prevent pneumonia (PCP, a specific kind that she will be vulnerable to with a low immune system) that she needs to take twice a day on the weekends.
- Zofran: anti-nausea medication for after her treatments--the carboplatin causes nausea.
- Miralax: laxative--the vincristine causes constipation
- Ummm. . . something like Lordicaine (if I had energy, I would run downstairs and check to see what is called) --it is a numbing cream that we put on her skin over her port so that when they stick the needle in, she won't feel it.
Our first Saturday trying to give her the liquid antibiotic was very exhausting to say the least. I started out trying to be sneaky. First, I put it in raspberry kefir. Kefir is a drinkable yogurt that has a very tart taste. I was sure that this would work. She took one sip and pushed it away saying it was gross and that she wanted strawberry kefir. So, I put a second dose in the strawberry kefir. I got the same reaction. Next I tried root beer. Nope. Root beer with ice. Nope. Bryson made popcicles out of it. Nope. I tried coaxing and bribing. Nope. Later on that day, we tried the force method. That resulted in her throwing up immediately afterwards. I was kind of at a loss.
I called the doctor and was told to take a break for a day and then try again. Okay. So, I did. The next day I tried cranberry juice. Nope. I put it in chocolate milk. Nope. Hot chocolate. Nope. Chocolate ice cream with chocolate syrup. Nope. I tried telling her that if she wouldn't take them, we would have to go back to the hospital and maybe even get a shot. We even got in the car. She would give in, but before actually taking it, she would change her mind and we'd be back at square one.
So, I had a big present I had found on clearance and was saving for the girls for Christmas. I got it out, set it up, showed her how cool it was and told her that if she would take her medicine, she could play with it and have it. She was very excited about it, but still said, "I'll wait until Christmas to play with it."
I called the nurse and got a new prescription for the pill form of septra. I crushed it up and put it in applesauce with a lot of cinnamon and sugar. She took a few bites, but still said it tasted gross (by the way, I never told her when I was putting it in something). I couldn't get her to eat any more. She was seriously screaming crying for over an hour while I was trying to convince her that she had to eat it.
The next day, I crushed up another pill and cooked it in an omelet. I put it in half of the omelet. She took one bite and ran to the garbage to spit it out because it tasted gross. She ate the other half of the omelet just fine. I now was at a complete loss of how to get this stubborn girl to take her meds--which were now more than half gone. . .
Well, I will continue this on in another post to update you on what is happening. On a happy note, she can't even tell when I put Miralax in her water and has had no problem with that! :)
Monday, April 16, 2012
Our Spring Break Miracle
With Lily and Benson at grandma's house, it was fairly quiet around here. Nathan was home from school for spring break and I am SO grateful to the wonderful friends that I have who let Nathan come and play with them and kept him from being totally bored all week hanging out at home with me and Kayla. This gave Kayla and I A LOT of time together. :)
She has always been very much a mama's girl. . . and now that has really increased. I couldn't get up and walk more than a few feet away without her trailing behind me asking me where we were going. It was nice to have some one on one time with her and she sure kept me busy! I am past the really tired pregnant stage, but I am still the regular pregnant tired. . . but Kayla was full of energy. We baked cookies, took walks around the block, played games, read books, cleaned house, etc.
One night while I was reading stories to Kayla, I asked her if she could pick out any letters on the page that she knew. She had to look hard, but she was able to point out several letters that were fairly small that she knew! This made me so happy! In the hospital, the doctor had mentioned that we may need to start learning braille for her, just to be prepared.
Over the next few days, I really started noticing improvement in Kayla's vision. She was comfortable to ride her bike around the block, she was running around, jumping on the trampoline, and having no problem seeing her food. Every once in a while I would notice that when she would reach to grab something small, she would miss, but there was still huge improvement in her eyesight. Did I mention how happy this made me! She could function pretty much normally. She was sitting far across them room from the TV one morning and started laughing. I asked her what was so funny and she described to me exactly what had happened on the cartoon she was watching. Yay!
This has been a HUGE blessing for us. It is one thing to deal with the whole tumor/chemo thing, but another thing to deal with it with a child who suddenly has impaired vision on top of that. I am so grateful that her eyesight has improved and she can go back to being a normal little girl who loves to color princess pictures and play with Polly Pockets.
She has always been very much a mama's girl. . . and now that has really increased. I couldn't get up and walk more than a few feet away without her trailing behind me asking me where we were going. It was nice to have some one on one time with her and she sure kept me busy! I am past the really tired pregnant stage, but I am still the regular pregnant tired. . . but Kayla was full of energy. We baked cookies, took walks around the block, played games, read books, cleaned house, etc.
One night while I was reading stories to Kayla, I asked her if she could pick out any letters on the page that she knew. She had to look hard, but she was able to point out several letters that were fairly small that she knew! This made me so happy! In the hospital, the doctor had mentioned that we may need to start learning braille for her, just to be prepared.
Over the next few days, I really started noticing improvement in Kayla's vision. She was comfortable to ride her bike around the block, she was running around, jumping on the trampoline, and having no problem seeing her food. Every once in a while I would notice that when she would reach to grab something small, she would miss, but there was still huge improvement in her eyesight. Did I mention how happy this made me! She could function pretty much normally. She was sitting far across them room from the TV one morning and started laughing. I asked her what was so funny and she described to me exactly what had happened on the cartoon she was watching. Yay!
This has been a HUGE blessing for us. It is one thing to deal with the whole tumor/chemo thing, but another thing to deal with it with a child who suddenly has impaired vision on top of that. I am so grateful that her eyesight has improved and she can go back to being a normal little girl who loves to color princess pictures and play with Polly Pockets.
Family Pictures
My mom and Kara offered to take Lily and Benson home with them for a week or so. Spring break was just about to start for us. Plus, Benson had a low fever and he and Lily had bad sounding coughs. Not exactly what I wanted Kayla to be exposed to right off the bat!
Since my mom was going to have the kids for awhile, I really wanted to get family pictures taken. We were way overdue for one and I especially wanted to get one before Kayla started losing her hair. The nurse told me that it usually starts two weeks after the first treatment. So, I called up a good friend in our ward who is a photographer ( http://trijen.com/) and asked him if he could take our pictures the next day. He was good to squeeze us in and took some amazing pictures.
10 1/2 years and counting. . .
Nathan 8 years old
Lily 6 1/2 years old
Kayla 4 1/2 years old
Benson 22 1/2 months
My personal favorite. . .
Home, Sweet, Home
Well, we did make it home! My good friend, Christy, brought Kayla over two cute balloons that she would not let go of. (Side note-- those balloons lasted for almost 3 weeks!) She even slept with them floating over her head. :)
We were very excited to be home. Kayla was especially excited and started going around everywhere. I could tell that her vision was still pretty limited, but that didn't stop her from walking around like she owned the place.
Lily, Kayla and I took a walk around the block and played at the park for a little while. At one point I remember Kayla looking up at the sun (it was pretty overcast, but you could tell where the sun was) and asking if that was a balloon up there.
She takes extra care when climbing up and downstairs, especially, but she wasn't afraid to go down the slide or climb up the curved ladder thing!
She even helped grandma wash our van.
It felt so good to be home (and to have grandma and aunt Kara there to help) and start to figure out what our new normal was going to be.
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