Remission...?? Won't know yet.

What's one of the worst things that can happen when your daughter has a low immune system?? Getting sick! Ugh, I think I may be getting a head cold or something. Which means an even more excessive amount of hand washing and anti bacterial soap. Plus being very cautious about exposing Jill to any of my germs. The doctors never tell the parents to stay completely clear of their child when they are sick because we are their care providers. It's impossible. Luckily jillys numbers are high and she is not in any major risks if she gets sick but she will still warrant a hospital visit if she gets a fever. Hopefully I get over this soon.

Well today went pretty good. Jill did so well under anesthesia and her tests went well. They took blood and urine for the research study. Unfortunately we won't have any results of remission until next week. I was so hoping we would know something today. We finally met our primary oncologist today. She is very nice and very informative. I think it will work out nicely. She told us that she would call us tonight if there were any bad news on Jill's procedure so let's hope for no phone calls! Otherwise we will have to wait till next week.

Jill is officially off of her steroids today. Yay! Hopefully her moods will get a bit better and she will stop eating us out of house and home. I swear I have never seen a child eat this much. She is not scheduled for any more steroids until we get further into treatment. As of right now she has a week off of chemo and only takes her dasatnib and septra on the weekends. Yay for less meds. She's driving me nuts arguing with her to take her medication. We go back in on Thursday of next week to get her central port line put in. Which means no more PICC line and I won't have to worry about flushing her lines everyday. It's so stressful doing the jobs that the nurses do when we are at the hospital. I should just go to nursing school so I know I'm doing it right. So the central line is similar to her PICC line but is more permanent and gets installed in her chest. We will be able to access it to administer her meds and chemo and to take blood from. She will be able to take baths and showers without having to worry about getting it wet which is great for me. It will be so much easier. Only thing that is concerning is every time they access the line they will have to poke her to get to it. That part will be hard for her but I'm sure she will get used to it. So we will be back here Thursday and staying the night. She will start her next phase of chemo on Friday, depending on what the test results come back. We found a great hotel here which isn't too expensive and is super nice so we intend on staying here every time we come up.

We got out of the hospital fairly early today and jilly was starving because they made her fast all morning. So we had to get her fed and then we promised we would take her to chuck e cheese after. Not the greatest place to take her because of all the germs and such but we took lots of precaution to keep her sanitized. I'm sure she will be fine. We are having a nice time up here so far. We plan on staying another night to just enjoy ourselves. We are going to take the kids to San Francisco tomorrow. Jill has been talking about wanting to go to the city so since we are close we decided to just take her to SF. We may head to downtown San Jose tonight to hang out. The doctor gave us permission to take her places and do things right now because her counts are so good. It can change fast so we need to take advantage of it. Once I get some results on her tests today I will update everyone. Happy Friday.

Here are some pictures of our trip so far. My favorite picture of me and my son. Love that kid. Happy he was able to come up with us this weekend.

Heritage "A" Crew

ExxonMobil Heritage "A" Crew sent Jillian a fun present for Christmas and well wishes along with an awesome picture of all of them. Just wanted to let you know Jillian received everything and loves the gift. It will keep her busy on her many many hospital visits. Thank you for everything, especially all your amazing donations. Steve Berry you have really been amazing making donations in the name of other people. I hope I have updated the list appropriately. Stay safe out there everyone! We will always keep you updated on jillys status. I hope one day we can bring her to meet everyone.

Another day in Stanford

Missed a day yesterday. There wasn't too much going on. We got to spend some time with my bestest cousin Rosa and jillys cousin Mia. It was so nice to visit with them and we had a mini game night. The girls had a blast. Can't wait till we can do it again!

Today we went up to Stanford for our mid week check up. Everything went amazing! Jillys ANC went up to 2700. Which means her immune system is getting even better. Even with the chemo she received on Friday her counts still look good. Her platelets went down but that was expected with the chemo. They are still no where low enough for her to need a transfusion. She's doing so awesome. Couldn't be happier for her right now. We are going to head up again tomorrow and stay the night because her appointment on Friday for her bone marrow aspiration and lumbar puncture will be early In the morning. We decided to go up with William too and just make a day out of it. Today was exhausting for us and I was so lucky to have my oldest friend Nat volunteer to go up with me and help. It was so nice to spend the day with her and have someone (other than a four year old) to talk to. I hope you can come again soon! Daniel is off of work for the next seven days now so he will be able to head up with us. He decided to not work any overtime this week in case something happened tomorrow that needed him to stay with us. I am so happy with the schedule that he works. It's tough when he is on his 7 day work week but so nice when he is off for 7 days. It will be great to spend sometime with him his week, and have some help!

I have some more thanks yous to give out today. First one is to the amazing Boys and Girls Club. They have been gathering donations since everything started with Jillian and have managed to collect an amazing amount of money to go into her account. Everyone over at the club really went above and beyond for Jillian and we want to say thank you to all of you, from Keystone Club to Torch Club and every child and adult who chose to put their money in jillys jars instead of using it for something else. We thank you from the bottom of our hearts!

Also to Brandi Howell who helped us out so much tonight by making us dinner! It's so nice to have food at home after a long day of traveling. I'm sure the soup will heat up nice and we are looking forward to eating left overs as well! Thank you so much.

Today has really been a long day. There's not much else to report. If I forget to give thanks to any one who deserves it I apologize. I'm trying to keep up with everyone and all the amazing things everyone has been doing for us. Sometimes it gets really overwhelming and I get forgetful. I will list all the donors we get on our donors list and that is my way of acknowledging you all with a huge thank you from us. If I forget a name please let me know! I hope everyone had an amazing New Years. Can't believe it's 2013 already. I have a feeling it's going to be a magical year!

Jilly at the hospital and with her cousin Mia. Also she colored this picture at Applebee's today. I was amazed by how well she did and wanted to share. Good night everyone!

So long Sparkles!

It’s hard to believe that it is the end of 2012. I can honestly say that this year has kicked my ass. Well mostly just December. We had some amazing things happen to us this year, such as my wonderful husband graduating Cal Poly and getting hired by an amazing company. Then we were able to move closer to home and my kids both enrolled in two awesome schools. My son is so blessed to be in Miss Stephs class over at Grover Heights. They have been one of the consistent things in his life since this whole mess started. They are amazing teachers, every single one of them, and we are so lucky William has a safe, fun and educational place to go every day. I thank you, Miss Steph, for taking care of my baby when I could not be there for him. The pictures you sent me when I was away made my days and you seriously go above and beyond for your students. Every single one of those boys are blessed to have you for a teacher!(I hope you are following my blog J)

Jillian had an amazing day today. We got to spend most of the day with my parents and my niece and nephew. Jilly got to go out to pizza with her Papa and she had so much fun (although there was tons of washing of the hands and such) She did so well on her outings and still insists that her tummy doesn’t hurt and we are not seeing any other bad symptoms. We all went to toys r us and she picked out a toy that she had wanted and didn’t get for Christmas.We also got her one of the Brat dolls that are made especially for Cancer. The doll is awesome and comes bald and with a beanie. She really likes it and it is actually looking like she is excited about her hair loss. Which is REALLY starting to happen now. It’s tough to see clumps of hair fall out every time I brush it but we all knew this would happen.

We are very cautious about where we take her and we use lots of hand sanitizer and wipe down anything she may touch.  Hopefully she did not catch anything on her outings today. I don’t want to treat her like she has to be put in a bubble for the rest of her life and I want her to be able to do some of the same things she has done in the past. It’s no life if all you are worrying about is staying away from places and people. We use caution and I hope that is enough.

We love spending time with Jillys cousins. Jilly was acting silly with her cousin Sammy today at dinner (linner lol) it’s so nice to see when her personality is still there. Sometimes she looks so down and just not herself.But today that was not the case! Love these girls! Mrs. Napkin Head and The Walrus

We got our time and day for our next clinic visit. It’s on Wednesday at 10:30, which means another long early drive for Jill and I. I need to schedule these appointments later so we can get more sleep. But this just means we will be home later. We are just doing a check up with the doctor and some blood work. I’m confident all will go well and we will be home the same day.

So today is the last day with our kitty Sparkles. She is just too much to handle right now with everything else we have going on. Plus for some strange reason she scratched Jillian yesterday and broke skin. It wouldn’tbe that big of a deal but Jilly’s immune system is not where it should be and we do not want to risk any infections. So we are giving her away to a wonderful family, we are hoping she fits in perfectly with them and if she doesn’t they are so nice enough to find her a home. Just a headache thats hard to deal with right now. We are very sad to be getting rid of her because we really love Sparkles, had we known Jilly would have gotten sick we would have never adopted her. So long Sparkles! You were a great cat and will be dearly missed.Thank you to the Norling Family for taking in our kitty!

Thanks for the dinner

First off I wanted to say thanks so much to Melanie and her family for a great dinner tonight! How nice it is to not have to worry about making dinner and just throwing something in the oven. Jillian loved it. My mother also made us lasagna so I was able to make that along with your dish. I so appreciate the food, it really does make my day easier. Thanks sister for organizing the food calendar. If anyone is interested in participating please just email me at team.jilly4@gmail.com and I can forward your information to my sister.

Today was another slow day for us. I so love having Jillian home even if we lay around in our pjs all day. William was a bit difficult again. He gets really restless when we are home but I still get nervous taking Jillian out so I wanted to have a mellow day. William was not happy about that! Thank goodness my parents came to the rescue and picked William up and took him to their house for a while. Daniel is picking him on his way home from work. My niece Sammy came again for the week to help with William. We are so lucky she has given up her Christmas break to come and help us. She is studying to work with special needs kids and man does this girl have the patience for that line of work. Love you Sammy and I am looking forward to the help this week! William is still out of school till next Monday. I can’t wait for his school to start back up. He does so much better when he has his schedule with school and therapy. Once that starts all back up I’m hoping his behaviors will improve too.

I’m not sure when our next clinic visit is. I am guessing on Tuesday because they have not called yet. I’m hoping it is not tomorrow since we are so far away I hope they would be considerate enough to give us some heads up. Maybe they will only want to see us on Friday because Jillian is doing so well. I think I forgot to mention (sorry if I have already) that we received a few envelopes the day we went to Stanford for clinic. One was from Jillian’s amazing class from New Life Preschool. Ms. Sheere and all Jillian’s friends sent her a book, a picture they drew and some art. She loved seeing something from her school and I pointed at all the kids names and art work. She was really happy. Also we got an adorable butterfly that Jillian wants to put up in her room from Pat over at Cal Poly. Thank you for thinking about Jillian. She loves to receive mail and loved the butterfly!

I am not sure what is on the agenda for tomorrow. Jillian’s moods have been good and she has been feeling really well. Maybe a park adventure would be good for her. I enjoyed taking her to the park yesterday because she was able to exercise her leg more. It still hurts her and she cant keep up with her brother or cousin but at least she is walking on it. When we were at the hospital she didn’t want to walk from her bed to the bathroom, this is probably also because we spoiled her and held her everywhere. Since we have been home she is using it more so that’s great. Hoping as treatment continues the pain will get better.

A day at the park

We got to take jilly out today since she is doing so well and her numbers look good. The doctor told me yesterday as long as we keep her from anyone who is sick and big crowds that she can go anywhere. It was so nice taking her out and visiting with her Tia Ruby, Tio Michael and cousin Teo. You can still see that she is sick but she keeps telling me that her head is fine and she doesn't have a stomach ache. I'm shocked how well she is taking all this. She's such a champ! Here's our fun day at the park feeding the ducks and playing.

Day 22

Jill and I are back up in Stanford for our first clinic day. It's been taking a while but I think it's just because its our first one. She's doing ok right now. Hooked up and about to receive her chemo. It's not a long process, just about five minutes but getting the process going is taking a while. Once we finish this then she has to get her PICC line dressing changed and that will be a huge ordeal. She's fine getting her medicine but having tape peeled off her skin is so traumatizing!

As I sit here watching her as she gets her chemo I can't help but feel like the mother from the movie "my sisters keeper". Being a cancer mom requires a lot of waiting and just supporting Jillian. It's hard to only be able to sit here and watch, I can't imagine how everything is on her. She's so amazing how she is responding to everything. If you haven't seen that movie then check it out. It's such a great movie but very sad, I doubt I will ever have the courage to watch it again now that we are living it.

We passed the room we spent almost a month in and Jillian starting crying that she wanted to go home. I felt bad for her and just kept telling her we weren't staying, just getting medicine. I know how she feels though! Her check up with the doctor went really well. Her ANC was right, I wanted to make sure it wasn't a mistake because her number went up so much. The doc said that when her bone marrow works correctly then her ANC will go up, she obviously couldn't say for sure but she thinks Jill's leukemia cells may be getting lower and lower since her count went up so much. We won't know for sure until se gets her bone marrow checked in a week but that's great news so far.

We should be heading out a Palo Alto soon. They want us to return in the middle of the week. During induction they want to see us twice a week. We only have a week left of induction so it's no big deal. Ill let everyone know how the rest of the day goes. Here's Jill on our way to Stanford and getting her chemo.