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.

Long long long night.

So we are back inpatient today. Jill had been feeling warm yesterday and her labs showed that she had a zero ANC still. I kept an eye on her yesterday and at about 730 she started to get chills. Now when they are teaching you about what to watch out for when you have a child with cancer, chills is high on the top of the list. So I called the pediatric oncologist on call at packard and the second I told her jilly was getting chills she told me to get her to the ER. So we headed to the ER and got her all checked in. They started her on antibiotics to help with any type of bacteria she may have gotten. They did labs and cultures so they can see what specifically she may have. We won't know for a few days so right now they are continuing her on broad antibiotics to fight off anything. She is still in so much pain from mouth sores and leg pain. They have her on some pain meds that are really helping her but its a fight to get her to take them! But ten minutes after she takes them she feels better and is able to be herself. Right now she is doing good. She hasn't gotten any more chills and her labs came back with low hemoglobin so she will be getting a transfusion today. Im hoping it will help with her energy because she is just super tired. As am I as well. They may not keep us too long this stay because she has not ran a fever and if her cultures come back good then they may let us go home. I am hoping she gets discharged because she is really excited that her cousin is coming up to visit this weekend and she needs a pick me up! So send all those prayers that she continues to look good and doesn't get a fever!!

Out of the hospital!

So today is the first full day that we are discharged. Unfortunately we are here back at the hospital getting labs done. She is not very excited to be back but this is the whole reason for staying local! She also has to get a shot today which I haven't explained to her because I know the anxiety she will get. So I am waiting till the very last minute to tell her! At least it is only one shot instead of being a daily thing.

She is doing great so far out of the hospital. We ended up getting a room at the Ronald McDonald house which turned out to be pretty cool. Jillian really likes it there and that's what matters. We Re currently in the stem cell part of the house which is a completely different building from the main house. Our room has a lot more amenities than most of the regular rooms because the children that normally stay in these rooms cannot leave very often. Their immune systems are very compromised so they make their rooms more comfortable. We have two beds a bathroom and a whole kitchen area. It's very convenient for us right how but they may move us if another family needs to be in that area of the house. This is because we are not stem cell patients but because the rest of the house was full and we are oncology they gave us this room as of now. So were happy! The house is really nice as well. There is so much for Jillian to do and kids to play with. We actually went to the play area yesterday and she made Easter eggs. I know she will have a lot of fun there but she is still pretty home sick. And to be honest so I am!! But we will get through this.

As far as chemo goes we are done for this month. She takes her regular experimental drug everyday still and her anti fungal medicine through her port but that is it. We are not scheduled for anymore inpatient stuff for a few weeks. So now it will just be Jill and I up here waiting for the next phase to start and trying to entertain ourselves!

We have a new address now for where we are so if anyone is planning on sending her anything just hold off for a bit and I will post her new address later today. I already told the people at the hospital that we are expecting some stuff so if you have already sent anything we will still get it! Thanks everyone. Jill's doing great. The people at Ronald McDonald yesterday didn't even believe she was the patient! That's how good she looks. :-)

Apple juice

Well I will never look at apple juice the same again. At the moment Jillian's potassium is very low from one of the chemos she has been taking. In order for us to get her potassium up they have prescribed her a supplement that can be mixed with apple juice. She does pretty well with the taste but the amount she has to drink is EXHAUSTING! It has to be diluted and mixed with at least 6 ounces of juice. Now this sounds like a simple task but when you are dealing with a child who is doped up with many different meds and chemo then you may understand the difficulty of getting her to drink an ounce of anything. Instead of sitting there and trying to make her drink the stuff from a straw I decided to just use a syringe and give her the apple juice like I would any other medication. Like I say she does well with the taste and keeps it down but having to fight with her every single time she has to take a dose is so mentally draining! We are hoping that her potassium level will go up by tonight so she does not have to take this again tomorrow. Other than this issue she is tolerating all her other meds great. Her CBC came back today and her numbers look amazing. He ANC jumped 1000 points and she is at about 1800. Her white blood count went up as well. If we were at home with these numbers we would be super stoked but being here and undergoing chemo I was a little discouraged. You always have that thought that if her numbers are good then the chemo must not be working. We discussed this concern with the oncologist and he said that was not the case. He was able to put my mind at ease for the moment but I am still secretly hoping to see some changes in her numbers. We will see.

Daniel and William got to come and hang out with us today. They were able to get their blood drawn for bone marrow testing. We should be getting the results back from that soon. Prayers prayers prayers! Daniel said William did HORRIBLE during the blood draw. I think they needed four people to hold him down! Wouldn't have guessed that when he came strutting back into Jill's room after he was done. All bandaged up and everything. He looked like he had accomplished something and was proud of himself. He was really funny. I'm glad he is Jillian's big brother. If jilly needs a transplant then he will be the one to be able to do that for her. What an amazing gift he can give her.

Jill was still not herself today. Even getting to see her dad didn't change much of her mood. She's sick and man is it showing this week. I keep telling myself its only a few more days and then she will be back to her normal self. Can't help but feel a bit selfish wanting her back. It hurts to see her the way she is when I know how amazing and full of life she normally is. Only a few more days of this!!

We have been working on her smash book a lot here. I love the fact that there's not rhyme or reason for this book. We can do what ever we want and make it as messy and tacky as we like and it still is super cool. I wanted to post some pictures of a few pages we have finished so everyone can get an idea of what we are making. She's having fun taking pictures of whatever she wants. We still have a lot more to do!!

Oh yea. Jillian wanted to send a big HI to JIMMY! She received his note today and his picture he drew her and will be responding to him very soon! Thanks so much. It really put a smile on her face!