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=

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.

"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.

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. 

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!!!!

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.

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.

Keira's last chemo treatment is scheduled for April 4, 2015

It is good to know there is an end in sight and they are predicting that Keira will finish six months sooner than they thought she would  when they gave us an update in January.  Keira continues to respond well to treatment and overall is doing really well. She has gained weight and looks much healthier. She is back on steroids so she is eating everything in sight.

Last week Keira and Brendan got to model ins a fashion show at a Kisses for Kyle event they had so much fun. Halloween was wonderful and they are so excited for Christmas. Being back to work is tougher than I imagined it would be, it is really hard sometimes to focus when in my heart I want to be with Keira. I'm beyond grateful for my job and the ability to keep it but I underestimated how tough it would be to juggle so much.

A tough part about having a child with cancer is that you get to know a lot of other kids and families battling cancer. Last week we learned that a young man that we knew lost his battle. He had gone through treatment once and then relapsed. He was a teenager so Keira didn't spend much time with him but his younger brother is her age and she played with him all the time at clinic. Keria also loved his mom, she was always sitting in her lap and playing with them.

Hearing about a loss stirs up so many emotions, my heart aches for his family, I am comforted that he is finally at peace and as horrible as it is to admit thankful that it wasn't my baby. Every day with Keira is a blessing!

The kids asked me to tape them "making a show" it is pretty cute and you can see how well Keira is doing.

http://www.youtube.com/watch?v=fPzXBUODCXU&feature=youtu.be

Feeling good!

Keira is doing really well. She will begin the maintenance phase of her treatment on October 29. During maintenance her chemo will be delivered in lower doses and she will have to go to the clinic about once a week. She will continue this treatment for the next 2.5 to 3 years. We are really getting into our new routine, Keira's teacher is here three days a week and she is doing very well. We are still able to get out a lot but soon with flu season we will have to be a lot more selective about where and when we go out. The good thing about maintenance is that she should have good white blood counts unless she gets sick. Unlike the earlier phases of treatment when the chemo caused her white blood cells to drop all the time. 

Keira's hair is coming back in. She can still lose it anytime she gets a certain medication that she will need periodically for the duration of her treatment but for now I think we might actually see some hair for the winter. 

We are still having a hard time getting calories into Keira. Even with Pediasure and an appetite stimulant it is tough because she wants to eat cucumbers and apples all day long. I have to actually tell her "no more cucumbers unless you dip them in dressing" or "no more apples until you eat some ice cream". 

She is in good spirits. This morning when she woke up she told me "I must have overslept" I asked her why she said that and she said "you were already up". "I know, there was someone using a chain saw or something this morning before 7:15 on my day off" I told her. "Why" she asked. "I don't know maybe they were cutting down a tree but it wasn't very nice for them to be out there that early". Her response.... "Poor tree, I hope it will be ok. I love trees".... honestly I don't think there is a kinder kid in the whole world. 

Oh yeah an entire month with no hospitalizations!

Keira was not in the hospital overnight for the entire month of September. Quite amazing! Hopefully October goes this well!

Well that was pretty much, what is the word I'm looking for?... Normal.

Keira is doing great. This weekend on the spur of the moment (a few days in advance) we decided to go to my parents house three hours away. The road trip was super fun and Keira did great. I had to pack her meds and braces but I barely thought about the fact that she could get sick and we would be stuck there. (Ok, barely is a bit of an exaggeration but it didn't occupy my mind the entire time so I think we are making progress.)

Keira is wearing her leg braces all day now. She is learning how to put them on by herself. As she does with everything, she is taking it all in stride.

Her home bound schooling started today. Her teacher will be here Monday, Tuesday and Wed. for about an hour and forty-five minutes. She did very well tonight so hopefully it stays that way.

I've been updating infrequently because everything is going so well.... hopefully it stays this way!!!!

Bella Ballerina.... YAY

Yesterday I took Keira to the shoe store and they were able to fit Bella Ballerina sneakers over her braces. She was thrilled and so was I. Other than new cool shoes there is not much to update everyone on (which is wonderful). Keira is getting chemo pretty much every week at the clinic but no chemo at home right now which is very nice. Yesterday the kids were talking about Halloween costumes, this year is flying by.

Hard to believe it is September already!

Keira is doing great. She had chemo two days last week so her appetite isn't as good as it could be but she is still eating well. When we were in the hospital a couple of weeks ago they wanted to give her a feeding tube but we convinced them to try an appetite stimulant first and she has put on 3.5 pounds since then which is a lot for someone so small.

On Thursday she was fitted for leg braces, she needs them because one of her medications affects her reflexes and she has been having a hard time walking. The braces are actually really cute she got to pick a design and she doesn't seem to be too concerned about them. The only issue is that she has to wear high top sneakers with them and we haven't picked them up yet. This might not seem like a big deal but Keira likes to wear dresses all the time and not just casual dresses but very fancy dresses with pretty shoes. Any time I try to put her in sneakers it is a battle so hopefully we'll be able to find dresses that  work with high tops.

Tonight our amazing neighbors took us out to dinner for my birthday and Keira got sick at the table, it was a shock because she hasn't been sick since we were on vacation a couple weeks ago. The restaurant cleared out and I'm sure there were some complaints. I felt awful but while I was cleaning her up our friends cleaned up the table and she got through the rest of the meal without issue. We were able to have a great time despite everything.... a glass of white wine makes it easier to deal with pretty much anything!

The hardest thing about childhood cancer is that it never takes a break. Even when Keira seems to be fine there is always something she is struggling with. We are very lucky that her treatments have become much less intense and are "supposed" to get even easier as we approach her one year anniversary in December. As an outsider it might be hard to believe but there are times that I don't even think about everything that is going on with her. Unfortunately, there is always a reminder to bring us back to reality.

Vacation was amazing!

 Keira was discharged from the hospital on Monday 8/19 and we left for vacation. We visited her Aunt's farm and then headed down to Virginia Beach. It was an absolutely amazing time. We came back the next Monday and Dad went back to work on Tuesday. Mom-mom will be coming down from Sunday to Thursday for the year to care for Keira, I can't imagine what we would do without her.

 We are feeling really good about both being back to work for the first time in nine months! Brendan Jr. starts Kindergarten on Tuesday so we are all very excited for him. Keira knows that she won't be able to go and she seems to be taking it well but she does still ask occasionally why she can't go and I explain it to her but I'm not sure she really gets it. She tells me that she "won't make the other kids sick because she doesn't have a fever" and it makes me feel bad. We've told her it is because she could get sick from the other kids but I'm not sure she believes us.

 Keira has another round of chemo starting this Tuesday but it shouldn't be as intense as the last one and there are no scheduled hospital stays so hopefully we can all be home together for a while!

Counts are back down

Keira's counts went down significantly instead of coming up. I think I jinxed us by getting excited that she could come home. She is feeling good, eating well and has no fever so that is good news. Now we wait....

Pins and needles once again

Keira is feeling much better today. Her appetite and energy level are normal, and she hasn't had a fever since last night. Her counts came back up significantly but she is still neutropenic. Her Dr. believes she will be coming home on Friday if she continues to do well. There may still be a chance for vacation after all….. it would be wonderful!

Admitted

Keira was admitted last night. She is now neutropenic so she will stay in the hospital until her counts come back up. It could be days or weeks. Maybe by some miracle she will be out by Saturday and all better so we can take vacation but I'm thinking next summer is a better bet.

UGH.... the E.R. again.

Keira had a blast at her birthday party! We had so much fun and were so glad she was able to be there and enjoy it. Today we went to the clinic, her counts are up so they told us we are good to go for vacation..... we came home, she took a nap and woke up with a 102.7 fever. So, she is getting comfortable in the E.R. This is the highest fever she has ever had so we are of course very concerned. She could come home tonight and get high doses of antibiotics at the clinic or the next 3 days (since she is not neutropenic) or they will admit her. We likely won't know how they will handle this for several hours. Other than the fever she was perfectly fine, no aches, pains or any other symptoms, just a little sleepy so hopefully they will fix her right up!

On another note, below is a picture of the O'Neill family, with our lemon smiles.... getting ready for the Alex's Lemonade stand million mile run / walk..... go team Keira!!!!!

Happy Birthday to you.... Happy Birthday to you

Today the twins turn five! So very hard to believe we've been blessed with our babies for five years. Keira is doing really well. She had a rough couple of days at the beginning of this week and her counts came back down but we are looking forward to her party this weekend.. We've been on pins and needles all week hoping that she is able to stay out of the hospital and with two days left I'm hoping I'm not jinxing us by posting. She had to go the clinic today and she asked us this morning... "do I need to get a beepy machine?" (that's what she calls her pump) and we told he we didn't know and she said " A beepy machine, even on my birthday no fair".... She did end up needing a beepy machine for platelets and I agree NO FAIR but she is home now and we are getting ready for their birthday dinner (tacos of course) and to open presents so they are really excited.

It's the little things!

Keira went in for Chemo on Monday but we were pleasantly surprised when the doctor told us she only had to stay one night instead of five. She is home and doing ok but the side effects are definitely kicking in and we've been told that this combination is going to be tougher on her than anything she has had before. We are keeping our fingers crossed that she won't be in the hospital for her Birthday on August 8 or for her party on August 10 and that she feels well enough to enjoy it.

Yesterday Brendan Jr. painted a seashell for Keira and gave it to her as soon as he got home. He was so excited to give it to her and said he made it to make her feel better. She took it and said "Brendan this is so beautiful you're the best brother ever" and gave him a big hug than she told him "I will keep this with me all the time so I can think of you even when we aren't together". It was so awesome, I wish I got it on video. So cool to see that even with everything this little girl is going through she still takes pleasure in the littlest things. My daughter has already taught me more than I will ever teach her and she continues to amaze me everyday. I am so blessed to have such beautiful children inside and out.

I can't wait until the day when cancer is a distant memory until then, we'll continue to find joy in the little things because Keira wouldn't have it any other way.