Happy New Year

Keira has been doing great the past few days she has had a lot of energy and has been in a good mood. We are still experiencing the joy of “roid rage” in a four year old and she is still eating very strange food combinations at crazy hours but she stops taking the steroid this Thursday so all of that will end soon. We got great news from the Dr. last week, he told us that the “day 8” biopsy results were really good and he expects her to be cancer free when they do the next biopsy this Thursday. Keira will also have port placement surgery on Thursday so it a big day for her. Please keep the positive energy coming. Happy New Year everyone!

Christmas

  We were so blessed to have Keira home to share Christmas with us. Her Mom-Mom, Pop-Pop and Uncle were here to celebrate with us. As usual she was a complete sweetheart, telling us how much she loves us, Christmas and her presents. The highlight of her day (aside from her grandparents being here) was probably mashed potatoes. We watched ELF for the first time and both Keira and Brendan loved it. Overall it was a tough day for her and of course it is hard for us to see the daughter who was perfectly healthy at Thanksgiving struggling to find energy to open her presents. Several of the presents purchased months ago seem completely inappropriate now like the baby alive that is all about hair and the kinnect games that require her to stand up and move around. Luckily, we know she will have good days and playing will come naturally again. 

A very special visit

Keira had a visit today from Frosty, Rudolph and an elf. She blurted out while hugging them “this is the best Christmas ever”. It was so awesome to see how excited she was. I'm so thankful for the friends that did this for us and came by to help Keira celebrate. She had so much fun playing and dancing that her and her brother are asleep on the couch at 6:30!  

Pizza and pickles at 4 A.M.

One of Keira's medicines is a steroid so occasionally she has overnight food cravings. Tonight around 4 she woke up screaming (roid rage) that she needed to eat. Two slices of Ellios with a side of pickles did the trick. Keira is really doing great. There has not been much going on medically besides clinic visits for Chemo and blood testing. They tell us she will definitely lose her hair and soon but so far we've seen no signs of that. On January third she will have tests and likely a surgery to have a port inserted under her skin. The port will eliminate the need for a PICC line and give her more freedom. Uneventful is exactly how we need her treatments to go so hopefully we can look forward to more random blog posts. 

Kindness

Keira is doing wonderful since coming home. Our friends, family and even strangers have been amazing! We are blown away by how supportive and generous people have been to us. My daughter's spirits have been lifted and it really means the world to us to see her smiling and enjoying life!

Welcome Home!

Keira came home yesterday around 3 PM. She is doing really well at home. In fact she is playing so normally, talking so well (she had started using baby talk in the hospital) and getting around so well that is easy to forget how sick she is. She definitely needed to be home. We had a discussion with her brother about handling her with kid gloves and about her PIC line that went really well. Mommy was really scared about having to flush the PIC line at home but I did it last night and it went fine. We go back to the hospital tomorrow for bone marrow biopsy and spinal tap. These tests will tell us if the cancer is responding as well to the treatments as Keira is.

Great day and great news!

Keira had a great day today. She is feeling very well and was able to walk around quite a bit. This is good news because yesterday she needed a wheel chair to get around. She saw Santa Claus and was given a Bratz doll (daddy is going to love it ;-). We also found out that Keira is responding so well to her Chemo that it is safe to take her home tomorrow. We have a nurse coming out to teach us how to care for her pic line and we will be administering the Chemo at home. It is scary to imagine doing all of this without a team of nurses and doctors but they wouldn't be letting us go home if they weren't sure we could handle it.  Keira will be in the out patient clinic a few times a week and will get blood and platelets as needed. The medicines change in each round of Chemo so hopefully she will continue to respond well. We have a long road ahead of but Keira is doing way better than expected. They initially told us she would have to be here for 15 days when she started Chemo on Wednesday and she is heading home on day 8! Please keep us in your thoughts and prayers it is obviously working.

Taking the good with the bad

Keira is not having a good day today. She is pain and she is "sad".  It is really tough to see her suffer. I know a lot of people want to do something to help. Keira needs blood and platelet transfusions wnenver her couts are too low (every couple of days so far). Giving blood in Keira's honor would be a wonderful to way to help her and all the kids suffering with this disease.

FIngers crossed

We received some more awesome news today. When Keira's Dr. came to check on her he told her that she is donig so well that if she continues to respond this well to her medicine she may go home as early as the end of this week. We are of course very excited but also nervous about having her home without a team of doctors and nurses.

Our darling girl is doing well

Keira is really doing great and responding well to her treatment. There are a lot of things she has to do as part of her regimen that she doesn't enjoy but she is such a trooper. She doesn't like the taste of the Chemo medicine and it breaks my heart that she actually knows the name of the drugs. For the past couple of days she has been telling us that she is “feeling better and doesn't need the decadron anymore”. When all of this is said and done she'll be well on her way to a nursing degree. Last night I explained to Keira that she was going to lose her hair once I assured her that it wouldn't hurt she was fine with it and later she told me that she was going to lose her hair but it wouldn’t hurt and it would grow back. There are other beautiful bald kiddos around here which made it easy to start the conversation.

We’ve received a lot of questions about Keira’s treatment so I’ll share with you some of the highlights of what is to come. If Keira continues to respond the way she has so far, she will go home in about 10 more days. Once we are home she will be on out-patient Chemo. The first five to six months will be the toughest and most of the really serious side effects of the medicine could occur during this time. There is a chance that Keira will still be able to start Kindergarten in the fall and she will likely have her hair back by then. There is just as good a chance that she will need to be home schooled for a while. It depends on how she continues to respond to the medicine and where her immunity levels are in September.

Please keep sending positive energy our way.

Thank you for your thoughts and prayers!

Since you're reading this we know that you are concerned about Keira and it truly means the world to us that we have so many people who care about our little princess.

On Monday Brendan took Keira to the Dr. for a rash that we thought was caused by a virus and nothing to be concerned about. Luckily, the on call Dr. at our practice ordered lab work immediately. Apparently it is very common for the symptoms of Leukemia to be completely overlooked or dismissed as a normal childhood illness.

The preliminary results of her labs showed that her hemoglobin, white blood cell and platelet levels were low so we were sent to St. Christopher's hospital. They repeated the tests for two consecutive days and when there was no improvement she had a bone marrow biopsy. That test revealed Leukemia and further tests determined the type to be acute lymphoblastic leukemia (ALL). This is good news because if you've got to have it, this is the one to have. The cure rates for ALL are very good somewhere between 80 and 90 percent depending on other factors.

On Wednesday we were transferred to the Oncology unit. Yesterday Keira began Chemo therapy and we learned that her cancer has not spread to her brain which is also very good news. We're only on day two of Chemo but so far Keira is responding well to the treatments.

Keira has been handling all of this unbelievably well so far. You always hear how resilient children are but it is awe inspiring to see it in person. We learned from the Dr. today that she is responding wonderfully to the Chemo, by this point in the therapy (day 4 ) the kids are usually in pretty bad shape but luckily that is not the case for her.

The staff at St. Chris are absolutely amazing! We've been here less than a week and I could give you so many examples of people going above and beyond to make these kids feel special, put their minds at ease and give them the highest quality care. They also go out of the way for the parents and give us all of the support we need. Keira and Brendan had a private concert on Tuesday night by Eric Bazilian of The Hooters. On Friday she was entertained by a clown and got to meet a puppy. Presents are filling up her room and she is in really great spirits considering everything that has happened in the past six days.

Over the past several days we've had the chance to see how wonderful our friends and family are. We've had so many offers of help especially to care for little Brendan and it means the world to us. Words of encouragement and keeping our baby in your thoughts and prayers really means more to us than we could ever put into words.

We have a long road ahead of us, Keira's full treatment will take about two and a half years but I have no doubt in my mind that Keira will get through this. As for the rest of us, we really are all doing just fine. Little Brendan seems to understand what is going on pretty well and has been taking it all in stride. We are doing the best we can to take care of Keira and each other.

We’ll use this blog to keep everyone posted on Kiki's progress and to share pictures and videos. I'm sorry that we can't reach out individually to update everyone who cares about us. There are just so many people in our corner!

Thank you for checking on Keira,
Sharon and Brendan