Jillian is officially under anesthesia right now. We drove up to Stanford last night because she had a 715 appointment. It was so adorable seeing her out under, she was giggling and smiling and then she was out. Each time she goes under it get a little easier. She responds really well to anesthesia so I'm praying this time is like the others. The only difference is this procedure is a little more intense than the others. She will be getting a tube down her throat this time around. Hoping they remove it before she wakes up. I know everything will go wonderfully and when it does it will be so much easier on both of us to take care of her line. I'm looking forward to not flushing her lines everyday. It's so stressful that they put those responsibilities on parents but i know its our job.
We came up last night with my cousin rosa and her daughter Mia. The company was great and Jillian had so much fun in the back seat with Mia. Mia's school made Jillian this AMAZING book that all the kids contributed to. Lots of pictures and just well wishes. It was so awesome to see and to realize all the prayers and thoughts she is getting from everywhere. Thank you all so much for the book. It was such a fantastic gift. I will post pictures of it soon! Mia is such a great cousin, she has been raising money on her own for Jillian. It's the sweetest thing to have children her age (7) want to help Jillian. Jilly is so loved.
This procedure should take about an hour. Daniel was not able to come up with me this time since his week on started today. We miss him when he is gone and its tough having to be the parent who does all this. Jilly misses him when he is not here but we know he is where he needs to be in order for Jillian to receive all this treatment. Somebody has to work. I'm lucky that I am a stay at home mom and I am able to be here with her without any worries. I couldn't imagine doing all this and having a job. It's a job in itself and I'm exhausted!
We will be here for another day. Jillian has clinic tomorrow and she will start her second phase of chemo. The break off was nice but we have to get back to it. We received blood results back from when she was tested on Tuesday. Her ANC went down to 1400 but its expected. It hard to see her numbers go lower but 1400 is still good. We have to stay positive. Her hemoglobin was low and they considered giving her a transfusion which meant heading up to Stanford earlier. They asked me how her behavior was and the night before she was having a dance party with my mom, so hearing that they decided she would be fine until we came up today. It was super funny. This girl is amazing. Even when her counts are down she is still full of life. Her white blood count went up which is always good and her platelets stayed the same. Even though we had some lower numbers I am still happy with how she is doing.
I will continue to update you all today on her progress. I leave you with the most recent pictures I have of the last week. She had a great one but its time to get back to business. I know she's going to rock this next phase of chemo.
Well we are back to the grind. William is back to school (and did so amazing today) Jill unfortunately is not back to school but we are back on the same schedule for a few days. It was so nice to get back to a normal day. I actually got to take William to school and pick him up. It was so nice to see everyone at school and feel normal again! I'm so happy he had a great day.
Jill and I got to visit her school today and see some of her friends. She loved seeing miss Sheere and we got to spend a little time there coloring. She misses school but knows it will be a while before she will be able to go back. She had a good day today. We went to lunch with her grandma and she is actually staying the night there tonight. Which means a good nights sleep for us. She had blood work done today which we haven't gotten results back from yet. They did a lot of testing on her blood and I have a feeling they are checking to see where she is at with being off chemo for a few days. Still no results from her tests. Hopefully soon! I'm going crazy wondering what the results are. We got a call today from the hospital saying our insurance approved testing for Daniel, will and I. We will be getting tested to see if any of us are bone marrow matches for Jillian, just in case. It will be good for us to know if we are matches if she ends up needing a transplant. If we are not then we will have time to look. Best case scenario is Daniel or I are a perfect match. I would rather us be matches then William. But he is her best chance. Prayers prayers prayers! Jill's appointment is scheduled for Thursday for her central line. My cousin and her daughter are coming up with us for a few days and were excited to spend some time with them! It's going to be a great week.
Well I have to say a super big thanks to bev and Megan for the dinners they prepared for us. All of it was truly amazing and its so exciting getting to see what is in store for us every night. Thanks so much! Everything was amazing.
What a day today. We have had the best time just enjoying the snow and relaxing. The kids are so happy here. It's hard to imagine going back to all our responsibilities at home. If only we could forget all our problems and stay here forever :-) we rode the gondolas today and surprisingly neither of the kids were scared, I happened to be the only one who didn't really enjoy it. I am very forgetful of the fact that I get motion sickness and have a slight fear of heights. So I basically sat there with my eyes closed while jilly and Daniel laughed at me. :-)
We walked to all the shops downtown at the state line and took the kids to one of the arcades in a casino. Every year we come here we always bring them to the same arcade and they love it. It was fun playing all the games with them. After the arcade we took them to make a snow man because that is what Jill wanted to do the whole time. Since we do not live in snow and rarely ever see it we underestimated how difficult it would be to actually make one. And how cold snow is! So we attempted to make our own and after freezing our butts of I noticed a ready made snow man hiding behind a tree. So we did a little touch ups and called it our own! Both the kids loved him and we got to leave the freezing cold early. Now we are back in the room just relaxing. Not sure what we have planned tomorrow yet. We may just come home or just stay another day. Who knows.
As far as Jill goes her health has held up and no fevers! Yay. She complained of a tummy ache last night but we think she just ate too much for dinner. She is still eating like she's on steroids and now I think it's catching up to her. She was great today and no big issues. So happy.
For Jillian's week off chemo we decided to make it the best one yet! Since we were already up north and all jilly talked about while she was in the hospital was the vacation house we took the extra drive up to Lake Tahoe. We come here every year in September and Jillian loves it here. The great thing about this time of year is that it is snowing! The kids were so super excited to see the snow and already have been playing in it. My amazing wonderful awesome Uncle Terry and Aunt Cindy were able to get us a suite at the Stardust which is basically in the heart of downtown. It is super nice and will and Jill love it here. We got in a bit late and weren't able to do much today but tomorrow we plan on taking them to play in the snow and ride the gondolas along with many other things I'm sure. It was such a spur of the moment trip (which sometimes turn out to be the best ones) and I am so excited we just said to hell with it and came. The excitement on the kids faces are well worth all the effort and long drive.
We had planned on going to San Francisco today and in a way we did. We drove through fishersman warf and Daniel got to see the giants stadium which he totally loved. Daniel highly enjoys going to the city since he was born and raised in Houston he misses the big buildings. I think he fell in love with San Fran but I'm not much of a city girl. The traffic alone drives me nuts. We got to drive on the bay bridge and the kids were so in awe. One more thing to check of the family bucket list! For the most part we just checked out the city on our way to Tahoe. Since we decided to come up here we didn't want to spend too much time in SF. We will eventually make our way back if Daniel has any say.
Today our awesome family and friends in Texas through Jillian a fundraiser there. From the looks of all the pictures they had a blast! I can't believe how much support and how amazing all our family are there. Jillian is so lucky to have people who care about her from everywhere! The fundraiser went amazingly and they raised a ton of money to go into Jillian's account. Thank you all so much from all of us, the amount of work everyone put into the fundraiser was insane. I LOVE LOVE LOVE all the shirts you made for her. Please send me one! :-) I hope one day soon when Jillian is all healthy we can make another trip to Texas to come visit everyone. She deserves to meet all the fantastic people who thought of her when she was sick. Thank you so much! Christine please send our gratitude to everyone who participated. We love you all.
I will post pictures of our mini vacation as we go. We are so happy to be able to take advantage of Jillian's week off any major treatment. She is feeling great, keep those prayers coming for no fevers. I hope everyone is have a fantastic weekend!
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.
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.
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!
