Well, today is Tuesday (the 28th) and we didn't have to go into the clinic. It was so nice! But, I haven't posted about last week yet, so let me get caught up here.
Last week was Kayla's first off week of the cycle. I convinced Dr. Hansen to let her get her IV Pentamadine that day, too, so we wouldn't have to go in on another separate day. He was totally fine with that. :) So, after getting Nathan and Lily off to school, dropping Benson off at a friend's house, we went in to Boise.
Sadie was in a super charming mood that day, smiling and laughing at everyone. :) She gets some sort of a pinch from just about everyone who passes by. Her cheeks, tummy and legs are just so irresistible.
Kayla got checked in, accessed and then we met with Marnie. We didn't have much to talk about, so it was a pretty quick visit. Kayla looks great and is doing great. Marnie reminded me that it would be better for Kayla NOT to wear flip flops during the summer (easier said than done) because there is a greater chance for scraping or cutting her toes, which could allow infection. I haven't been to strict about enforcing that yet. . . because all she has is flip flops right now. I try hard to make sure she is wearing some sort of shoe when she is outside period. It's too easy to run outside barefoot.
Anyway, it was a good visit and we headed to the chemo suite for Pentamadine. While we were back there, Kayla's blood counts were finally back. Her neutrophils were at 850. I was pleased, since last week they were at 650, but Marnie said that they are probably still on their way down before they will come back up, so to be extra cautious about exposure to germs and infection. (They would probably not approve of her going to church/primary right now, or out the to the orchard to thin peaches, or any of the other things we have done this past week. . . but she is still going strong and full of energy. . . and we are counting our blessings).
Our stay was about an hour and a half in the chemo suite and Kayla spent most of that watching another girl play some games, but she didn't want to join her. And then we headed home.
And now we have 6 weeks left! Pray that Kayla counts will be up enough next week that she will be able to start her LAST cycle without any delays. Thank you!!
Tuesday, May 28, 2013
Friday, May 17, 2013
Time to Spill the Beans
So, we have a surprise package arriving in early November. I have to admit, that it surprised us, too. But, we are very excited to keep up with the many adventures headed our way. I've been trying to think of creative ways to tell, and I think I have thought of a few, but I can't remember them anymore. So, our "little" family of 7 is becoming a family of 8. Yes, the baby and Sadie will be 13 months apart. I have gotten over the shock by now (I'm 15 weeks), so now I pass it on to you. :) Some little spirit is just super anxious to join our family, I guess!
May 14th - Week 52
This past visit was good, but a close one to being delayed. After dropping Benson off at another friend's house (where he'd never been before - what a trooper he is!) we drove to Boise and did our usual thing.
We got to meet with Dr. Hansen again, with was really nice. I was out of questions for him, though. :) Kayla's neutrophil count was down to 650. Since we are in the middle of a cycle (week 4), her neutrophils have to be at least 500. Phew! Her platelets were good, about 300. The nurse brought up her hemoglobin being a little low, but still good. I wasn't sure where the line was on that because Kayla has never had an issue with it. She said that they like to delay chemo if it gets down to or below 7. Kayla's were at about 9, so over all, we were good to go. Halleluia! This has been the first cycle in a long time with no delays whatsoever. Her next two weeks are off weeks for chemo, but we will still have to go in - probably both weeks since her counts were so low. I really hope they bounce back so we can get through the LAST 6 week cycle with no delays! 4 more doses of chemo and the rest are off weeks. Yay!
We had a quiet day in the chemo suite, watching movies, eating and doing projects. For the last hour, Kayla's new little friend was outside, so we went out and played games with her and Miss Jenn. Nothing too spectacular to report, just the usual stuff.
One more week down.
Tuesday, May 7, 2013
May 7th - Week 51
Today was week 51! I can't believe how fast the end is coming! Kayla's counts were great today, neutrophils were 1300 and platelets 186. Nice! She is just doing great and we are plugging right along.
We got to meet with Dr. Hansen today. Yay! It was nice because I had a question for him. Kayla had a dentist appointment scheduled with the office that did her dental surgery a year ago. We have gone in for one 6 month check-up since then and this one would be the second. The annoying thing is that the office is in Boise and she can't even get her teeth cleaned because of her port. There is a huge risk of infection with dental work. So, basically, she can get x-rays (IF she cooperates with that) and the dentist looks at her teeth and we go. The trip to me seemed like a waste. When the dental office called me to confirm her appointment, the lady asked if Kayla would be coming pre-medicated. Uh, no, she would not. At her last check-up, the dentist said he would talk to Dr. Hansen about Kayla getting her teeth cleaned. She would have to have an antibiotic before getting the cleaning done. Well, I'm pretty sure that he didn't talk to Dr. Hansen and I told the lady who called that as far as I know, Kayla is not supposed to get her teeth cleaned.
I'm going to continue on this tangent for a minute. . . this morning as I am getting ready to head to the clinic, the dentist office called me - checking about cleaning again. I told her, again, that Kayla could not have her teeth cleaned, but that I was going to see her doctor today and that I would double check with him. So, she wanted me to call her back and let her know once I found out. Okay. . . then she called back a minute later saying that Kayla's appointment was actually with a different dentist than the one who did the dental surgery so, we could change her appointment to the afternoon in order to meet with the other dentist. Sigh. . . this appointment has been scheduled for 6 months and the day before they realize this and want to reschedule. I had already made babysitting arrangements for Benson and we had other plans in Boise right after Kayla's appointment. Anyway, I'm pretty sure the dentist that Kayla was scheduled with was the same one we saw 6 months ago, which was not the one who did the surgery, but I was okay with seeing him again. After all, he's just going to look at her teeth. So, the plan was still for me to call after we met with Dr. Hansen.
So, back to our visit with Dr. Hansen. . . I told him about the dentist appointment and about how they wanted to clean her teeth and how I kept telling them no, they couldn't. He completely agreed with me. It was not worth the risk to have her teeth cleaned. Okay. So, next question I asked. . . how long did we need to keep going back to this dental office?? We were set up with them originally by the clinic because this dentist had, whatever they're called, "privileges," to do dental surgery in the hospital downtown. Great, we got that done. Now, could I just take her to our local family dentist that is five minutes away from our house? Dr. Hansen said that we could do whatever we preferred. He said to check with our family dentist to make sure he is comfortable seeing someone in Kayla's situation, but if he is, then great, go ahead. Yay! That was a load off of my stress bundle. (I called and cancelled the appointment right after our visit and told them I was going somewhere else. . . in a nice way, of course.) Her port would be out soon and she will be fine getting her teeth cleaned in another 9 months or so.
Speaking of getting her port out, we talked about that for a bit. From our conversation, I think I understood that Kayla would get her port taken out about 3 months after she is done with chemo. This will be good because there is a lot of risk involved with having a central line, but she has done so well with not having any problems with it. The downside is that she will need to go in for Pentamadine once a month for about 6 months after treatment is over and she'll have to just get a regular IV in the arm. I guess we'll cross that bridge when we come to it. She is so used to having her port accessed that it is no big deal anymore. We may face more challenges when she goes in for future MRIs and has to use the gas mask because she doesn't have her port anymore. Hopefully, she will mature a lot between now and then!
Anyway, that was pretty much our visit. We spent the rest of the day in the chemo suite watching a movie, eating lunch, reading, and working on a Mother's Day project. Kayla spent most of the day doing that with Miss Jenn and another little girl. When she was done, she came and told me that she had made a new friend. Yay! Sadie was a sweetie as usual and the nurses always comment on how good she is.
We got to meet with Dr. Hansen today. Yay! It was nice because I had a question for him. Kayla had a dentist appointment scheduled with the office that did her dental surgery a year ago. We have gone in for one 6 month check-up since then and this one would be the second. The annoying thing is that the office is in Boise and she can't even get her teeth cleaned because of her port. There is a huge risk of infection with dental work. So, basically, she can get x-rays (IF she cooperates with that) and the dentist looks at her teeth and we go. The trip to me seemed like a waste. When the dental office called me to confirm her appointment, the lady asked if Kayla would be coming pre-medicated. Uh, no, she would not. At her last check-up, the dentist said he would talk to Dr. Hansen about Kayla getting her teeth cleaned. She would have to have an antibiotic before getting the cleaning done. Well, I'm pretty sure that he didn't talk to Dr. Hansen and I told the lady who called that as far as I know, Kayla is not supposed to get her teeth cleaned.
I'm going to continue on this tangent for a minute. . . this morning as I am getting ready to head to the clinic, the dentist office called me - checking about cleaning again. I told her, again, that Kayla could not have her teeth cleaned, but that I was going to see her doctor today and that I would double check with him. So, she wanted me to call her back and let her know once I found out. Okay. . . then she called back a minute later saying that Kayla's appointment was actually with a different dentist than the one who did the dental surgery so, we could change her appointment to the afternoon in order to meet with the other dentist. Sigh. . . this appointment has been scheduled for 6 months and the day before they realize this and want to reschedule. I had already made babysitting arrangements for Benson and we had other plans in Boise right after Kayla's appointment. Anyway, I'm pretty sure the dentist that Kayla was scheduled with was the same one we saw 6 months ago, which was not the one who did the surgery, but I was okay with seeing him again. After all, he's just going to look at her teeth. So, the plan was still for me to call after we met with Dr. Hansen.
So, back to our visit with Dr. Hansen. . . I told him about the dentist appointment and about how they wanted to clean her teeth and how I kept telling them no, they couldn't. He completely agreed with me. It was not worth the risk to have her teeth cleaned. Okay. So, next question I asked. . . how long did we need to keep going back to this dental office?? We were set up with them originally by the clinic because this dentist had, whatever they're called, "privileges," to do dental surgery in the hospital downtown. Great, we got that done. Now, could I just take her to our local family dentist that is five minutes away from our house? Dr. Hansen said that we could do whatever we preferred. He said to check with our family dentist to make sure he is comfortable seeing someone in Kayla's situation, but if he is, then great, go ahead. Yay! That was a load off of my stress bundle. (I called and cancelled the appointment right after our visit and told them I was going somewhere else. . . in a nice way, of course.) Her port would be out soon and she will be fine getting her teeth cleaned in another 9 months or so.
Speaking of getting her port out, we talked about that for a bit. From our conversation, I think I understood that Kayla would get her port taken out about 3 months after she is done with chemo. This will be good because there is a lot of risk involved with having a central line, but she has done so well with not having any problems with it. The downside is that she will need to go in for Pentamadine once a month for about 6 months after treatment is over and she'll have to just get a regular IV in the arm. I guess we'll cross that bridge when we come to it. She is so used to having her port accessed that it is no big deal anymore. We may face more challenges when she goes in for future MRIs and has to use the gas mask because she doesn't have her port anymore. Hopefully, she will mature a lot between now and then!
Anyway, that was pretty much our visit. We spent the rest of the day in the chemo suite watching a movie, eating lunch, reading, and working on a Mother's Day project. Kayla spent most of the day doing that with Miss Jenn and another little girl. When she was done, she came and told me that she had made a new friend. Yay! Sadie was a sweetie as usual and the nurses always comment on how good she is.
Sunday, May 5, 2013
MSTI Family Prom
Saturday night was the MSTI Family Prom. They always put on such great parties, so we were excited to go. Here was the drawbridge as we came in. . .
There were some ladies from Sephora there to put make-up on the girls. They were super excited about that. Glitter eye shadow and lipstick. :) Once they had make-up on, we went in a photo booth and took some pictures. I haven't scanned those in. . .
The theme was knights and princesses.
The music was great and the kids had a blast showing their moves on the dance floor. Bryson took turns dancing with everyone. :) Lily was quite the little dancer. She was so much fun to watch! She'd just go out and dance around or try to copy what some of the nurses were doing. Most people were REALLY dressed up like princesses and one of the doctors was there dressed up like a king.
Benson had some pretty smooth moves on the dance floor, too. It was pretty funny! By the end, even Kayla was having fun dancing around.
Of course, the kids enjoyed the cake.
I mostly danced around with Sadie in my arms. Sometimes, with both Benson and Sadie. Once Sadie heard the music she was practically jumping out of the car seat. She had fun dancing around. :)
Towards the end, they drew names for the prom prince, princess, king and queen. And what do you know. . . Nathan got drawn for the prom prince! He got a nice sash and a Build-A-Bear dressed up like a knight. Nathan was excited to win. He won a drawing at the MSTI Christmas party, too.
And that was our night! The kids had a ton of fun and went right to bed when we got home. It was a tiring night.
April 30th - Week 50
Last Tuesday, we headed out a little earlier than we have been lately. We dropped Benson off at a friend's house at 8:30 AM and headed to the clinic.
Kayla got checked in, accessed and we settled into our regular spot in the chemo suite until Dr. Hansen was ready to meet with us. Sadie's legs, arms or cheeks got squeezed by just about everyone we passed. :) No one can resist her chubbiness. We saw Marnie and she was excited about Kayla's news. She said that in the literature, it says that tumors like hers can go completely away. . . but that no one had ever seen it. I told her that we are glad to be the exception. We seem to beat all the odds. :)
It was nice to meet with Dr. Hansen. We got Kayla's immunization exemption form filled out for kindergarten. She didn't get her 4-year-old shots before all this happened and she can't get any until at least 6 months after treatment is done. Dr. Hansen was very pleased with Kayla's results from the last MRI and I asked him if anything interesting was discussed at the Brain Tumor Conference and if this meant or changed anything about the future. It didn't change anything. He said that she would finish out her treatments, she is very close to being done, now (wow!). He also said that we will celebrate, be happy, and hope that the tumor is gone forever, but they will continue to scan her and check her like it will come back. I guess that is playing it safe.
Kayla, Sadie and I spent the rest of the day in the chemo suite watching movies, reading, eating lunch and doing projects. I was thinking that we'd be done earlier since we started earlier, but things still take time and it was 3 PM before we left for home.
The absolute nicest thing lately has been Kayla's new anti-nausea medication. I keep reminding myself what a blessing that has been! No more fights over taking zofran! My stress level over that has completely disappeared. And, Kayla has hardly even felt sick the entire day after. She has energy and we can go out and do things. Before, we spent the entire day after chemo with her sick on the couch or with little energy and me not getting much done. It was taking up two days out of each week--which is a lot. So, I am so grateful for how good she feels and how the chemo doesn't seem to even phase her.
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