We got to be in the chemo suite for the hour or so it takes to get Pentamadine. As you can see, Kayla was very into her movie while Miss Jenn tried to talk to her. And,. . . I really can't remember much more.
Tuesday, August 27, 2013
July 19th- Week 59
Even though chemo was done, Kayla still technically had 2 more weeks. For this visit, she also got pentamadine. We went in to the clinic the morning after we got back from Utah. Lily, Benson and Nathan all went to friends' houses. I can't remember a lot of specifics about this visit. . . I have been really slacking on keeping up. There must not have been anything too memorable happen. . . I think we met with Dr. Hansen. Kayla's counts were pretty low, but she still looked great. We had survived a trip to Utah and were heading out of town again the next week. Since she still has her port, we need to still be aware and call the clinic if she has any fevers.
We got to be in the chemo suite for the hour or so it takes to get Pentamadine. As you can see, Kayla was very into her movie while Miss Jenn tried to talk to her. And,. . . I really can't remember much more.
We got to be in the chemo suite for the hour or so it takes to get Pentamadine. As you can see, Kayla was very into her movie while Miss Jenn tried to talk to her. And,. . . I really can't remember much more.
Tuesday, August 20, 2013
Utah Trip
The very next week after Kayla's last treatment we headed down to Utah to visit some family and friends. We had a nice BBQ at Bryson's brother's house with lots of family. The cousins all had fun in the water.
We got to see my sister and her family for a little bit, too. Sadie is a few weeks younger than cousin Tucker, but she definitely has a few pounds on him.
The girls had fun playing. Each time we saw them, they had pinker eyes, cheeks and lips. . .
We went to Temple Square while we were down there and met up with Bryson's sister and cousin Cade.
It was SOOO hot, and of course we did the roof tour of the Conference Center. . .
We squeezed in a visit with a good friend from when we lived in Las Vegas.
And we stayed with some more friends from when we lived in Vegas. The kids always have fun playing and we enjoy visiting. :)
It was a pretty quick trip, but we made the most of our time and got to see lots of family and friends. Good times! (I am consciously choosing to forget the LONG drive home with many cranky kids. . .) Ha ha.
July 13th MSTI Family Picnic
That Saturday after Kayla's last chemo there was a family picnic put on by the clinic. Their activities are always so much fun that we just couldn't miss this one. :)
We had a great picnic lunch of fried chicken, potato salad, watermelon, chips and cookies and then the kids played some games to earn tickets.
With the tickets they earned, they could buy prizes at the end. We all had a great time!
Monday, August 5, 2013
July 11th - Week 58: MRI and LAST CHEMO!!!
Yay! We finally made it to Kayla's last treatment! And we sure went out with a BANG! We had to be at the hospital at 6:30 AM for Kayla's MRI. Ugh. So, before 6 AM, we were loaded in the car and on our way. I took Sadie with us and Bryson took Nathan, Lily, and Benson to a friend's house later that morning.
We got to the hospital by 6:30 AM, got registered and then went into the MRI waiting room. This was all old hat to Kayla now. We both knew the drill. We went into a room where the nurse checked her vitals and then accessed her port. Because of past experience with being accessed at the hospital (they had to search forever to find the right needle) I asked the nurses at the clinic if they could pack us a little kit with everything that was needed to access Kayla's port. That proved to be very handy. :) The hospital must be used to accessing ports while the kids are asleep, though, because it always surprises them when I tell them that Kayla prefers to be accessed before she is put to sleep, so she can be put to sleep through IV. The thing that was more difficult than the last couple MRI's was that Sadie was now three months older AND mobile. So, I was trying to feed her some breakfast while we were waiting and trying to keep her content with sitting in the stroller. Ha ha.
When it was time, Kayla walked back to the MRI room with the nurses while Sadie and I waited in the room and eventually went into the Surgery Waiting Room. I was able to get Sadie to take a short nap while we waited. I expected Kayla to be done in about an hour, but it was almost an hour and a half before they came and got me. When I got back to the recovery room, I knew why. Kayla was already awake and very upset that I wasn't there. The last several MRI's they have come and gotten me before she woke up, so I guess I didn't specify this time that I needed to be there when she woke up. Bummer--that kind of threw off the rest of our day. It took me awhile to calm Kayla down. She wouldn't let go of me. That got a little crazy when Sadie also wanted some attention. . . . luckily they let us leave pretty soon after that.
Kayla didn't want to ride in a wheel chair, or in a wagon (she was still upset), so she chose the ride in the bed and the transport guy took us through the "secret passage way" that went underground connecting the hospital with the clinic. When we got to the back entrance to the chemo suite I was able to convince Kayla to get up and walk so the guy wouldn't have to figure out how to the the bed in and out of the clinic.
We found a spot to hang out for the day. Unfortunately, the crib room was taken already and Kayla didn't want the other bed, so we took a chair and got settled. Kayla's IV pole was decorated with a poster and a bunch of beaded necklaces for her last chemo day. :) I was very happy to hear when we went in that her counts were good enough for chemo. Yay!! Her neutrophils were about 640 (if I am remembering right) and they need to be above 500. Whew, just barely made it! Her platelets were great.
We got to meet with Dr. Hansen that day, which was really nice. We talked about what comes next. Bascially, Kayla will be having MRI's every 3 months for the first year, then every 4 months for the next year, then every 6 months, then every year after that. She will be having doctor visits to go over the MRI's each time. Kayla will also be getting three more months of Pentamadine. After her next MRI (in 3 months) she will have her port taken out. I mentioned that the next big thing would be getting Kayla to be put under anesthesia with a gas mask, because she'll have to do that once her port is taken out. We'll have to start practicing that one. . .
I also asked Dr. Hansen what side effects we'd be looking for or might see in the future from the chemo. He said that we'd watch for kidney damage, but Kayla did get 3 hours of fluid each time to try to prevent that. He also said that we'd want to make sure that she keeps growing well, keeps up in school, and goes through puberty at the right time - not too early, not too late. He said again how well Kayla has done through all this. Considering what she has gone through, I don't think she could have done any better. To even make it through this far and never get any kind of infection (knock on wood), or to never need any kind of blood transfusion or to get platelets, which are both pretty common. Also, she never lost weight and her growth wasn't stunted at all. She pretty much went on like a normal growing girl!
So, the rest of the day we spent in the chemo suite, taking it easy, watching movies, eating lunch, playing games, and keeping Sadie entertained.
d
When her time was about up, Marnie came and talked to me. She asked if I had ever seen what they do on the last day of chemo. I said no. She told me that I might want to have my camera ready. I asked her if Kayla would run and hide under a blanket and she said, "probably."
After that final BEEP from her IV pole, we got packed up and headed down the hall. We were met by all of the nurses and staff wearing silly hats and standing in a group. Miss Kim gave Kayla a crown to wear and let her ring a bell 3 times. It's a tradition for the kids to do that after their last chemo. Then they all sang a song to her. It was to the tune of the Oscar Meyer bologna song:
Our patient has the cutest S M I L E
Our patient has the sweetest H E A R T
We love to see you everyday
But now it's time for us to say
Pack your bags, get out the door
You don't need chemo any more!
It was so sweet! They all had a present for Kayla, too. It was this super nice Cinderella barbie doll and a cute little stuffed dog. I was pretty surprised that Kayla just sat there and watched them sing to her without even trying to hide behind me. :) She did great.
I hugged everyone afterwards and we all shed a few tears (I had felt pretty emotional all that day anyway). These people were like family to us now.
We got to the hospital by 6:30 AM, got registered and then went into the MRI waiting room. This was all old hat to Kayla now. We both knew the drill. We went into a room where the nurse checked her vitals and then accessed her port. Because of past experience with being accessed at the hospital (they had to search forever to find the right needle) I asked the nurses at the clinic if they could pack us a little kit with everything that was needed to access Kayla's port. That proved to be very handy. :) The hospital must be used to accessing ports while the kids are asleep, though, because it always surprises them when I tell them that Kayla prefers to be accessed before she is put to sleep, so she can be put to sleep through IV. The thing that was more difficult than the last couple MRI's was that Sadie was now three months older AND mobile. So, I was trying to feed her some breakfast while we were waiting and trying to keep her content with sitting in the stroller. Ha ha.
When it was time, Kayla walked back to the MRI room with the nurses while Sadie and I waited in the room and eventually went into the Surgery Waiting Room. I was able to get Sadie to take a short nap while we waited. I expected Kayla to be done in about an hour, but it was almost an hour and a half before they came and got me. When I got back to the recovery room, I knew why. Kayla was already awake and very upset that I wasn't there. The last several MRI's they have come and gotten me before she woke up, so I guess I didn't specify this time that I needed to be there when she woke up. Bummer--that kind of threw off the rest of our day. It took me awhile to calm Kayla down. She wouldn't let go of me. That got a little crazy when Sadie also wanted some attention. . . . luckily they let us leave pretty soon after that.
Kayla didn't want to ride in a wheel chair, or in a wagon (she was still upset), so she chose the ride in the bed and the transport guy took us through the "secret passage way" that went underground connecting the hospital with the clinic. When we got to the back entrance to the chemo suite I was able to convince Kayla to get up and walk so the guy wouldn't have to figure out how to the the bed in and out of the clinic.
We found a spot to hang out for the day. Unfortunately, the crib room was taken already and Kayla didn't want the other bed, so we took a chair and got settled. Kayla's IV pole was decorated with a poster and a bunch of beaded necklaces for her last chemo day. :) I was very happy to hear when we went in that her counts were good enough for chemo. Yay!! Her neutrophils were about 640 (if I am remembering right) and they need to be above 500. Whew, just barely made it! Her platelets were great.
We got to meet with Dr. Hansen that day, which was really nice. We talked about what comes next. Bascially, Kayla will be having MRI's every 3 months for the first year, then every 4 months for the next year, then every 6 months, then every year after that. She will be having doctor visits to go over the MRI's each time. Kayla will also be getting three more months of Pentamadine. After her next MRI (in 3 months) she will have her port taken out. I mentioned that the next big thing would be getting Kayla to be put under anesthesia with a gas mask, because she'll have to do that once her port is taken out. We'll have to start practicing that one. . .
I also asked Dr. Hansen what side effects we'd be looking for or might see in the future from the chemo. He said that we'd watch for kidney damage, but Kayla did get 3 hours of fluid each time to try to prevent that. He also said that we'd want to make sure that she keeps growing well, keeps up in school, and goes through puberty at the right time - not too early, not too late. He said again how well Kayla has done through all this. Considering what she has gone through, I don't think she could have done any better. To even make it through this far and never get any kind of infection (knock on wood), or to never need any kind of blood transfusion or to get platelets, which are both pretty common. Also, she never lost weight and her growth wasn't stunted at all. She pretty much went on like a normal growing girl!
So, the rest of the day we spent in the chemo suite, taking it easy, watching movies, eating lunch, playing games, and keeping Sadie entertained.
d
When her time was about up, Marnie came and talked to me. She asked if I had ever seen what they do on the last day of chemo. I said no. She told me that I might want to have my camera ready. I asked her if Kayla would run and hide under a blanket and she said, "probably."
After that final BEEP from her IV pole, we got packed up and headed down the hall. We were met by all of the nurses and staff wearing silly hats and standing in a group. Miss Kim gave Kayla a crown to wear and let her ring a bell 3 times. It's a tradition for the kids to do that after their last chemo. Then they all sang a song to her. It was to the tune of the Oscar Meyer bologna song:
Our patient has the cutest S M I L E
Our patient has the sweetest H E A R T
We love to see you everyday
But now it's time for us to say
Pack your bags, get out the door
You don't need chemo any more!
It was so sweet! They all had a present for Kayla, too. It was this super nice Cinderella barbie doll and a cute little stuffed dog. I was pretty surprised that Kayla just sat there and watched them sing to her without even trying to hide behind me. :) She did great.
I hugged everyone afterwards and we all shed a few tears (I had felt pretty emotional all that day anyway). These people were like family to us now.
As we were really about to leave, one of the nurses quickly looked up Kayla's MRI results to see if they were in. And they were! So, she and Dr. Hansen were there to tell us that Kayla's MRI still showed no sign of any tumors or anything out of the ordinary. Hooray! That was another good note to leave on. :)
And then we drove home, getting the kids all picked up and home close to 5PM. Talk about a long day! I could hardly keep my eyes open that night. But, we are DONE with chemo!!!!!
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