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!

Day 3 of 6

Hi all. So it's our third day here and my expectations of what these days were going to be like are not at all what they are turning out to be. Usually when we are inpatient we are just waiting for Jill's numbers to go up and for the most part she is still herself, happy and all. Well these last few days have not been that way. I feel so bad for her because you can tell that she doesn't feel right. She is not getting sick to the point of vomiting or anything but I can tell she is not feeling well. Can't blame her with all these meds she's getting. Once this week is over and we are done with this intense week the. I'm hoping her mood goes back to normal. I miss my jilly bean :-)

We haven't gotten the main results back from her procedures she has on Wednesday but they did tell us that everything looks great so far! From the naked eye that cannot see any leukemia cells in her blood which is AMAZING!! We won't know the results of the more intensive testing for a few more days. But great great news. All your prayers are working!!

Jillian's Address

Hey everyone. Here is Jill's address for the week here in Stanford. Since we will be here for a while even if it changes or we are not inpatient at the time they will still be able to get us what ever gets sent:

Jillian Garcia

725 Welch Road

1 north room 1452b

Palo Alto, CA 94304

We bought Jillian a new age polaroid camera so when she takes pictures they are instant and she can put them in her smash book. If any one wants to send her up some film for it that would be awesome! We got some film at toy r us but I'm not sure if it can be bought somewhere else too. They are ten bucks for ten pictures. It can get pricey for us! So here is the camera and the film just in case anyone wants to send her something! And also for any supplies for her smash book too. Anything can be sent to this address. Thanks everyone! First day here in Stanford is almost over and I'm exhausted!! Woke up way too early. I'm ready to go to sleep!

Too much fun!

I believe I may be making these hospital trips too much fun for Jillian. When we got to the hospital this morning Jillian tells me "mommy, I'm so excited!!!". It felt like we were going to Disneyland! Lol it's so nice to know that she is happy to be here even though she goes through so many procedures and chemo when she's here. I would rather her be happy than upset but I never would have guess she would be this happy!

We got here about 7:30 and checked in. She wet under about twenty minutes ago and I am sitting here in the waiting area waiting for her procedure to be done so I can head back to see her. She has always done so well so I'm sure this time will be the same. It's sweet to see her go under. For just a moment she's my little baby again instead of a big girl like she prefers to be called.

I will have more time to update the blog regularly now that we are here. This first week will be really intense for Jillian. Ill keep everyone posted on how she is doing! Keep those prayers coming!!

Here is Jill and her cousin. We all went to dinner last night so everyone could say bye to her.

A bitter sweet day

Jill's counts came back great yesterday. Her ANC jumped to 1500 which means tomorrow starts our three month journey in Stanford. She is scheduled for her bone marrow aspiration and lumbar puncture tomorrow. They will be giving her three different types of chemo in her spine during this procedure. This is just part of her ALL protocol and would have happened even if she was not high risk with the Philadelphia chromosome. As always jilly is super excited about heading up there. I think she may be having too much fun while we are there. Lol I may have to dial down the fun so she won't want to stay there forever!! :-) usually after a week or so she is ready to come home though.

I do find this day to be a bit bitter sweet. We are so happy that her body has FINALLY recovered from the last dose of chemo and that she is as healthy as we can hope for right now. But it is sad to know that we will be leaving our boys for a very long time. Although we are all prepared for this it will still be very hard being away for so long. I'm hoping that Daniel and William will have fun together here with it just being them two.

I bought Jillian a smash book yesterday. I was thinking it would be really cool to help her document her time in the hospital. I'm going to have her take all the pictures that she wants and decorate her smash book with them. She is constantly getting stickers whenever she goes to the doctor so this will be a great place to put all those stickers! So if anyone is interested in donating some cool supplies for Jill's smash book let me know and I can send you our address if you want to send some stuff up! The more stuff she has the more fun it will be. I'm excited to see how it turns out. We may have to get her a few books during this journey.

I'm pretty certain that I will bringing back a bald headed child when we get back. I have a feeling that consolidation is going to do in her hair. She is prepared to be bald and we are planning on taking some really cute pictures when she loses all her hair. It should be adorable.

Now is the time for me to brag about my amazing son. Yesterday we caught him spelling out words with his magnetic letters. It was so cool to see that he is able to do this. We are not sure why he spelled out what he did but hey, it was a whole word and that's amazing!! Ill post the picture of it!

Wish us luck this next three months and send all the prayers you can. She will do just great, we know it!!