Monday, April 13, 2015

Hip hip hooray!!!!

It has been a while since I've posted because quite honestly there hasn't been much to post but for anyone who doesn't know yet. Keira completed her treatment on April 4, 2015. This means that she is now done with Chemo and provided that she stays cancer free she will be considered cured in five years. She will be monitored closely by her oncologists and will have a few more bone marrow biopsies (spinal taps) to make sure the leukemia does not return. We are overjoyed that our hero has come through this. We wish her nothing less the best that world has to offer. Our twins are our miracles and their incredible bravery through this strenuous ordeal has been nothing short of amazing. I am so proud of my family. This has not been an easy road but we are stronger, wiser and closer because of it.



If you want to support Keira as she wraps up treatment please consider donating to our team for the Kisses for Kyle 5K and fun walk http://www.kintera.org/faf/donorReg/donorPledge.asp?ievent=1131324&lis=1&kntae1131324=AB720E5429A14E6FA29E3F430F67CEDB&supId=418236171&emaillogid=

Thursday, November 13, 2014

My name is Keira.... you can call me Keira.

My plan to update more frequently has not worked out too well. Since the twins birthday we've been super busy. Keira and Brendan are first graders now which means a lot of homework... really a surprising amount.

Keira is feeling good. She is pretty used to her medication routine but she still has bad days. This Tuesday she wasn't well enough to go to school in the morning after methatrexate, she slept for a while and had zofran and was able to go in around noon. She still has all of the emotional side effects too that are really tough on her and us.

Halloween was really fun, Keira was a witch and Brendan was as swamp monster, lots of candy was had by all. Their Christmas lists have already been in the mail for weeks so I think it is safe to say we're getting ready for the holidays.

This Saturday we will go to the second annual Lady Bug Ball. The first Lady Bug Ball was very soon after Keira was diagnosed and it meant a lot to us to get out and be around people who understood what we were going through. We've come a really long way since then and we feel incredibly blessed that we learned about the Kisses for Kyle foundation and have been able to become part of the KFK family.

Keira announced to us a couple weeks ago that she doesn't like Kiki anymore so I have to do my best not to call her that, even though I love it.

Here is Keira first thing in the morning, always with a smile on her face. Such a beautiful, sweet girl.


I will post pictures from the Lady Bug Ball, maybe I'll even remember to do it before the new year.

Thursday, July 17, 2014

"Mom, just make sure it doesn't rain on our birthday, okay"

Keira continues to respond very well to treatment. We now have eight months left of chemo. She has adjusted pretty well to the maintenance regimen. She has to take steroids for the first five days of every month which can be really tough. She can't sleep and is hungry all the time. The side effects from her various medications include mood swings, paranoia, irritability, anxiety and a host of others. She has tantrums sometimes like a toddler which is embarrassing when it happens in public. The first two weeks of each treatment cycle are the toughest. We just started this cycle on Monday.

These side effects are insignificant in the grand scheme of things but they can be tough to deal with from day to day. The worst is when she gets very upset because she will scream at me that she hates me or I am the worst mother and then ten minutes later she is hysterical and apologizing because she feels terrible and can't control herself. I am getting a glimpse of what it will be like to have a teenager  and quite honestly.... I'm scared.

Other than the side effects, everything is going great. Keira and Brendan are enjoying the summer very much but really can't wait for their birthday so they keep wishing it away. The other day in the car she said "Mom, just make sure it doesn't rain on our birthday, okay" she was so matter of fact that for a minute I had to remind myself (and then her) that I have no control over the weather.

The twins are taking swimming lessons and we were able to spend a day in Ocean City courtesy of Kisses for Kyle. We had a really great time. Then we went to visit mom-mom and pop-pop and of course went to Knoebel's for a couple days and she had an absolute blast. She loves the rides even the really scary adult rides that make me feel sick just watching.

This picture was taken over the weekend.... you can see how incredibly healthy she looks and how nice her hair is coming back. I'm going to try to post more to the blog. I know everyone is still very concerned about Keira and it means so very much to us.




Sunday, May 11, 2014

Keira is doing great

I've been so bad about updating the blog because things have been going well and there isn't much to report. Keira was able to start school on April 28. She went for a week and then a teacher had Shingles so she missed last week. She'll be back again on Monday. Overall she is doing very well. Her hair is growing in and looks so cute. She has gained all of her weight back and a little "cushion". She was in the hospital in February and March for short periods while she was sick but they didn't have to keep her for weeks like they did before she was in maintenance.

In April we got to take Keira and Brendan to Disney for 5 days. They had an absolute blast. We didn't say anything for the months leading up to going because we wanted to get a Disney surprise video and well, we were surprised. This video cracks me up. 



Sunday, January 5, 2014

Christmas was incredible.

Keira attended 7 holiday parties this year! She has been feeling good and not much has changed. I learned last week that the medicines she is on will be repeated over and over again for the next 16 months while she is in maintenance. That will make it easy for us to dispense (she takes 7 or 8 meds daily depending on the time of the month). I'm a little stressed because the steroids are still causing sleeplessness and mood swings hopefully the side effects will dwindle the longer she is on them. We had an amazing Christmas thanks to Kisses for Kyle and St. Christopher's. We are looking forward to 2014!!!!


Thursday, December 5, 2013

One year ago today our lives changed forever

 I used to wonder all the time when I would feel like an adult. Having a career, getting married, having children, none of that ever made me feel like an adult. I've always been responsible but I also always felt like I was still a kid. Until I heard Keira's diagnosis and had to sign paperwork for my baby to have her first blood transfusion. That was it, the day that I was unmistakably an adult. It seems impossible that a whole year has gone by. Our family has been changed forever. We now know how precious every moment is, how nothing can be taken for granted and how absolutely amazing people can be to one another.

We've had a tough year for sure. We know that there are many others who have it much worse and many who would have given anything to hold to their babies for 365 days after their diagnosis. I'd like to think that we have something to do with why Keira is coming through all of this so well but really I know that we're getting through this because our daughter is so incredible. I know with every fiber of my being that Keira will beat this and go on to get nothing less than the best that the world has to offer. She simply has to.

Saturday, November 30, 2013

It's the holiday season......

Thanksgiving was awesome! We had such a wonderful time at my cousin's new house. Keira enjoyed the turkey enough to have seconds. Her appetite has been wonderful without steroids or an appetite stimulant so we are thrilled. One of the drugs she is taking (not sure which) is causing sleeplessness. Since last week she has been getting up at 4 a.m and cannot get back to sleep. It has been tough on us because she gets up several times during the night and then is ready to go at 4. We haven't been this tired since we had infants. Last night she work up at 4 but went back to sleep until 7 so I'm really hoping she is going to get back to a normal sleep schedule.

We are so very thankful for how wonderful Keira is doing. We have now been through three consecutive months without a hospitalization. There isn't much to blog about because she is simply doing great!!!!

We tried to take a picture for our Holiday cards today but my camera decided to stay at my cousins and help with leftovers and I don't love the ones from the iphone so we'll try again tomorrow but here is a sneak preview.