Wow six months!!

Well I'm not sure if there are a whole lot of followers here since it's been so long since my last post. I really do hope you have been able to follow Jill's story on her Facebook page. It's so much easier for me to update her status on there. As far as Jillian goes, she couldn't be doing any better! Like seriously, she is amazing. We reached a year a few weeks ago. She is still showing no signs of any leukemia cells and is finally in maintenance. She's back at school and is feeling so great. The next two years will be a bit of a hassle because she's taking meds that require planning ahead but we are so happy to do so. I sit in disbelief about how well she has done this past year. Last year was the worst time of our lives and to be honest this month has been one of the bests. To see her kicking cancers ass like she is is so inspiring. She is one tough cookie that's for sure! Please continue to follow her sorry on face book at Jillian's journey. I am so happy I haven't needed to update this as often as I have before. It means she's doing fantastic!! Also thank you to Valarie King who made a donation to Jillian's Paypal account! Merry Christmas and happy Holidays to everyone! 

Update!

Hi everyone! I hope you have been able to follow Jill's story on her Facebook account. It's easier for me to post daily there. Please know that Jill's Paypal account that's attached to this blog can still receive donations if anyone wants to donate to Jill. Don't forget about her fundraiser coming up this Saturday. It's going to be great!! Jillian is doing amazing still. We had a few hiccups the last few weeks and were inpatient for a while but now she is home and hopefully will be home for the next few weeks. Maintenance is almost here!! I feel like we have gone through so much and are finally almost in the home stretch. Keep those prayers coming everyone! Ill try to post more often but please know you can get daily updates from her Facebook page listed in a few posts below!! 

Latest fundraiser

Hey everyone! Here is jillys latest fundraiser. Please come if you can and purchase some bar b q tickets. They can be purchased at the boys and girls club in Santa Maria or contact me and I can arrange for a drop off. Thanks so much! Jillys doing great this week. She has a lumbar puncture on Friday in Stanford, other than that it should be an easy week. 

Facebook page!

Hey everyone. So I started a Facebook page for Jillian. It's easier for me to keep updated with daily things. If you want you can search her page Team Jilly Beans Fight with Leukemia and like her page to get daily updates. Jill is home right now taking chemo at home. She's doing great and we recently shaved her head because most of her hair was gone! Ill leave you with her latest picture. Keep those prayers coming!

Waiting for counts... Again!

Hey everyone. So low counts and a low fever has caused Jillian to be inpatient for the last two weeks. We are still up in Stanford waiting for her counts to get up to 500 so we can start her chemo again. Her numbers right now are at 120. She actually contracted a bacteria that has been giving her diarrhea for the last month or so. She has been on antibiotics for two weeks treating the bacteria but she is still showing symtoms. She's been going so much that she has lost some weight but we have managed to stop the loss and maintain where she is at right now. Which is good. She's still looking pretty skinny and its hard to see her like that but she's eating and that's all that matters. 

Her mood is great still. The last week has been just a waiting game in numbers so she's been very active in the room. Since she's in isolation she can't leave the room which is harder for me I think, but I have been keeping her entertained with activities and games. I didn't come as prepared as I normally do because this stay was so unexpected and we were ambulanced up. But we are managing with what we have! 

We are waiting to start re-induction 1b which consists of regular weekly chemo and a lumbare puncture that we will hopefully get done by the end of this week. She's still doing great with her chemo and still has managed to hold in to some of her hair. It's bizarre to see how far we have come and how well she is doing. We couldn't be happier! 

We have been at this for almost 8 months now. It's a little like what I expected but also so much different since I didn't really know what to expect. Being inpatient can be so depressing at times too. You can really tell the parents who are new diagnoses and I feel so bad for them. Even though its been only 8 months I feel like such a veteran when it comes to leukemia. I want to tell them that it gets easier and better but you can never predict that. We are just so lucky that Jillian is doing as well as she is. But at any time she could turn a corner and things can change so fast. I am always so grateful for her progress right now but can never rest easy. We have done the calculations and if her treatment continues to go on without any interruptions then we should be in maintenance on November 4th. Seems is long away but to be honest these last 8 months flew by! So keep those prayers coming. We need to make counts ASAP so we can start her back up on chemo. No more waiting game!! Thanks for being patient with me everyone! Hope you are all well. 

Weekend fun

I wanted to share an amazing picture my sister captured of Jillian yesterday when we were at the park. We had such a fun day playing and being goofy all day. It's great to see her so alive and playful. We head to Stanford on Monday to get some chemo done and check labs. My wonderful oldest best friend forever April is coming with us so we will have someone to entertain us! :-) hope you enjoy the picture. Jill is having a great weekend!!

Doing amazing, as always!!

Well after lots of guilt from my husband for neglecting my blog I am back and ready to update. I am hoping to post regularly now since we are home for a while. Lots has happened since my last posts. Jills doing amazing, as always, and we are home with the family. It is so nice to be home and be able to be with both my babies. We are getting back into our regular routine, although i do think William is missing hanging out with his grandparents so much! I don't know what we would have done without them these last few months, we are so grateful to have such amazing parents. Thank you to you all!

So Jill got through the worst of her treatment. The three months spent in Stanford (off and on) were tough, really tough. We battled lots of side effects from her chemo, nothing too serious, so we got lucky. Home sickness was at the top of our list. But we had each other and we got through it. She is so happy to be home and is currently in Re-induction phase. Which is similar to her induction phase and she is doing pretty good so far. We had a little scare yesterday from one of the chemos she received. She had a reaction that caused her to get a 104 fever. It spiked super quick so it was a little scary. This is the first time she has had a reaction to one of her meds. She comes down with symptoms but not reactions. So we did the usual CBC, cultures and tylenol. Her counts came back great, probably the highest that they have ever been so if she did have an infection then her body should be able to fight it. If her counts had been low then we would have been sent to Stanford. Her oncologists have allowed us to get her treatment done here at home and we have 30 days away from Stanford, as long as she doesn't come down with anything, so we were a bit freaked that we were going to have to head up there. So her numbers came back great so I was able to take her home and watch her here. I kept on eye on her all night and her tempt never went back up so I held off on Tylenol. Since then she has not gotten a fever which leads us to believe that it was just a reaction to the chemo. Its good and bad. Its good because we know what it is but bad because she could react again to the medicine. Over time she can get more and more reactions to the meds so pray that she responds to it good the next time she gets it!

She has been doing really well at home. We have managed to keep her pretty healthy. It would be great to never have to be inpatient again, but the odds of that are pretty slim. But we are going to do our damnedest to keep her healthy! Her hair is finally growing back! She is still holding on to a decent amount and when the rest of her hair grows back I'm hoping she wont look so bald! She still is not having any issues with her hair which is great. This kid is so amazing and is happy all the time. Her hair isn't something that will bring her down! We are so lucky that she is such a terrific child!

This is where i want to give a shout out to a great organization. I think i may have mentioned them before in a post but i wanted to talk about them a little more again. Jacks Helping Hand which is based out of San Luis Obispo has been such a great organization that has helped Daniel and I out so much! Mary who runs the organization has been truly amazing to us. As of now Daniel and I have managed to pay off all our medical bills with all the donations we have received from all you amazing people and from the help of Jacks Helping Hands. Im going to post a little bit of personal information because i really don't care if people know some of our financial business. Because Daniel works for such an amazing company we are so lucky to have really good medical insurance. We love working for ExxonMobil! So as far as our medical bills go it costs us a total of 5 thousand dollars a year to treat Jillian's cancer. No matter how much her treatment costs we will always only pay 5 thousand dollars a year. Unfortunately Jillian got diagnosed in December of 2012. So our insurance hit us with 5 thousand for the month of December (one month of treatment costs well of 5 grand a month) so after January of 2013 we had already racked up ten thousand in medical bills. Quiet daunting don't you think?? Well because we know so many amazing people and Jillian is loved by so many we managed to raise about ten grand from donations and fundraisers. You are all amazing!! We had to use a lot of the money for expenses and living while we were going back and forth to Stanford so much. We were able to use about 7,000 on medical bills. Maybe more too. Well the amazing Jacks Helping Hands helped us with the last bit of our bills this year and we are now officially debt free with medical bills!!! Its such a relief to not have to be so stressed out about how we are going to pay for Jillian's treatment and we can just treat her. So THANK YOU to everyone who donated to JIllian to to Jacks Helping Hands for being so amazing! We now can focus on saving the five grand we need for next years medical bills. Thank you thank you thank you to everyone!!!

Consolidation done!!

We're here and we are doing great!!! So sorry for the lonnnnng break but its just been an exhausting few weeks. Jill and I are currently at the Ronald McDonald house waiting for her numbers to go up so we can go home. This was her last inpatient chemo and she rocked it! No mouth sores, butt sores, hand sores or any sores of any kind as of now! This last block was a bit easier than the first two so we are being optimistic that she will remain in good health. She's doing so very fantastic!

We found out a few weeks ago that William is indeed a match for Jillian if we ever need to do a bone marrow transplant. We were ecstatic to hear this since William is her only sibling. We had to put all our chips on him since we had no other choice right now. He pulled through and is a great match for her. So if things start going in the other direction and she looks like she needs a transplant then we have our donor. Such an amazing thing he can do for her! But as of right now she is doing so utterly amazing that a transplant is no where in the future, especially if she continues the way she is. We could not be an happier with how she is doing. The doctors couldn't be any happier as well! Yay for Jill.

She celebrated her fifth birthday on the 20th an was able to be home for it. She had such a great time at her party. Thank you to everyone who came to celebrate with us. You made her day so awesome. Ill post pics of her fun day.

As far as Jillian goes she's still losing weight. We have been speaking with the hospitals nutritionist about how to keep her maintaining the weight she is at and to put some more weight on her. She's dropped about 8 pounds since she got diagnosed. Which doesn't sound like a lot but on her it is. Plus she needs to keep up as much strength as she can through all this. So we are trying to get her to eat higher calorie foods and more of them. During the weeks she gets chemo she has a really hard time eating and usually drops weight so it's hard then. But she usually starts eating better once we leave the hospital. She already is now. So that's great!

She's still holding on to some of her hair. It's super thinned now and you can see many bald spots. She barely has any left but I am able to put it in a pony tail still so that's good. I was thinking this last block would do the trick but as of right now we are not seeing any loss. She's still happy with her hair too.

Since this is the last inpatient chemo that we will have (unless there is a relapse, which there won't be!) we are now getting into the next phase once she count recovers from this one and has a little brake. We will be coming into re induction 1 which is lots of outpatient chemo which I'm hoping we will be able to do locally. Fingers crossed! This drive up to Stanford weekly is starting to get exhausting so if our docs will let us get most of our chemo done at home then that would be so much better! The doctors said that this phase isn't supposed to suppress her numbers that much, to the point where she shouldn't be nuetropenic that often. So it's possible to live a semi normal life. She wants to get back into dance class which I'm hoping the doctors will be ok with. It's been an exhausting few months so I hope the next are easy. We need some easy ones. So unless Jillian gets sick and a fever then we should be done staying the night at the hospital! So send those prayers that we can keep her healthy. Thanks to everyone for being patient with me. Just know Jill is doing so good. All your prayers are working!!

What a month!

Exhaustion is a small way of describing these last few weeks. I have not had the energy to blog. I barely have the energy to take on my daily tasks. Jillian is doing very well this phase. We just finished block 2 of consolidation and it really kicked her butt. Block one was difficult with mouth sores, leg pain and tons of hair loss! Block 2 consists of new meds and new symptoms. We finished up block 2 on Monday night. We got to come home for a few days on Tuesday but was right back up to Stanford Thursday night to the ER. Jill ended up with a really bad sore (diaper rash if you will) on her butt. The sore was completely raw and bled, along with the sore her numbers dropped because of the chemo which made the sore a hundred times worse because it is a huge spot for infection. Whenever she poops she runs the risk of poop infecting her sore. Because of this my mom and I decided to bring her up to Stanford and get her admitted for antibiotics to prevent any type of infection she could get. So that's where we are now inpatient. She's doing amazing today. Her butt is clearing up and some other symptoms she had are also getting better. She is currently on oxycodon to help with any pain from her past chemo and all her sores. It really helps her throughout the day. Every time she takes it she goes back to being herself and its so nice to see. It's hard to see her in so much pain!

My sister was able to come up and stay most the time for Jill's block 2 phase. It was awesome to have her here to help. She was truly amazing to have and I can't thank her enough for all the support and help! Thank you sister, I hope you can come and help again soon!

I got lucky to be able to have my mom up with us this week. We are hoping to get out of the hospital so we can have a little fun around palo alto before we have to go back inpatient for her last block. If her butt clears up some more and her numbers go up then we can. So send those prayers.!

We received some more donations to Jill. Thank you to everyone who has donated and sent things to Jill. Please know how much we appreciate everything and if I don't get a chance to personally thank you it's because I have so much going on, but we are receiving everything and are so grateful! I will update the donor lost as soon as possible. I hope everyone is well. I apologize for taking so long to update everyone. It's just been a tough tough time. But know Jill is still doing great and is responding to chemo so well. Her hair is almost all gone now but she is still happy and oh so beautiful!

         

Yay!

Some more great news! We came in this morning to get Jillian's labs done and her ANC came back 7,500. It has never been that high before! Now it's only this high because she got a shot to boost her numbers but hey, it's high! So our oncologist is allowing us to go home today! Like home home. We don't have to be back to Stanford till Wednesday when we start our second week of chemo. Jillian is so excited to get to see her family! She's doing so great. Right now we are waiting to get some platelets before we leave because she was a bit low and they do not want to send her home with low platelets. So once we get done with this transfusion, we are out of here!

On another note, Jillian's hair has started falling out again! She finally has bald spots that are very visible. Her hair is falling out like crazy! We were ready for this. We were certain consolidation would take her hair so she is fine and happy. Soon we will have a beautiful bald little girl. Happy Easter everyone! So glad we will be able to spend it with our family!

Fantastic fantastic fantastic news today!!

Soooooo!!! Fantastic news today! Jillian and I had a doctors appointment and labs today. Her counts came back pretty normal other than her ANC of course. Her ANC came back 16 which is pretty normal for where she is at during treatment. But today her oncologist told us that Jillian's mrd results that we have been waiting for for quiet some time has finally come back! And they came back NEGATIVE! Which basically means that Jillian is in complete remission. It's a little hard to explain exactly what it means but since the MRD is negative we can now rest assure that we are going in the right direction. We do not need to start thinking about doing a bone marrow transplant now. If her MRD came back positive then we would have most likely changed her protocol and started the stem cell transplant protocol. So it's great news! We have been waiting on these results since we first heard Jillian had leukemia. It's such a relief and we are so happy to know that Jillian is responding exactly how all the doctors want her to respond to treatment. It makes all this even more worth it! So thank you all for all your prayers!

So we got discharged from the hospital yesterday. We actually got to visit with my sister, mom and brother law and jilly got to see her cousin this weekend. It was so great having some of my family here. Jill and I really needed to see familiar faces. It gets a bit lonely here just her and I. We had a lot fun seeing all of them and we can't wait for them to come back! Jillian is doing great since being in the hospital. They think she may have an infection that could be causing some of her symptoms so they are putting her on some antibiotics to help prevent anything serious. But as of right now she is great!

We had a fundraiser that happened this weekend that I wasn't able to promote as much as I should have. My husbands old work put on rummage sale back at the apartments that we used to live at in paso Robles. They did so well at the sale! Thank you to Deanna, Veronica , Theresa and Kim Gaspar. The whole community came together and showed up for Jillian! Can't believe how well you did and how much effort you put towards helping our family! We are so blessed to know you all!

Also my Moz side if the family are doing a fundraiser today for Jillian. They came together and made tons of tamales to sell for her. Even though it has been years and years since i have seen my family and most of them I have never met, they still came together to help. I hope one day when Jillian is cancer free and doing awesome we can bring her up to meet you all! Thank you to everyone!

She got a bunch of stuff this weekend from many people! The Camachos sent her tons of film for her camera and man have we used that up! Also her grandma sent her film, a video game and tons of stickers and supplies for the smash book. My sister and brother in law also brought her up a bunch supplies for the book. Thank so much! She received a box full of activities and supplies from my cousins Diana and Amanda. It will keep her occupied for sometime. It's so nice to have a bunch of stuff to do with her. And today she received a packaged from one of my old Senior Chiefs from when I was in the Navy. Tom Forehand sent her tons of stickers and color stuff. She had fun going through all her stuff and have already started using everything! I am so grateful that the short time I spent in the military has left my husband and I with life long friends. They are all amazing!

Thanks to everyone for everything. And to everyone who are still donating to jilly through pay pal. Every little bit helps! Please know that the pay pal account is still up and running and any donations can be made there! Hope everyone is well!

New address!

Here is Jillian's address at the Ronald McDonald house. We will be able to get anything there even if we are inpatient!

Jillian Garcia / G101
c/o Ronald McDonald House
520 San Hill Road
Palo Alto, CA 94304

Thanks to everyone who has sent is stuff already!! We appreciate everything.