Home with a zero ANC.

Hi all. Hope everyone is doing well! Sorry for the long break in posts again. We have been home since last Monday and Jillian is doing great. She's so happy to be home and to be close to her family. Everything is going well at home. We did labs yesterday and her ANC came back zero. Which is as expected since she got a high dose of chemo on Friday to finish up induction. We are now waiting for her counts to recover so we can do her bone marrow aspiration and to start consolidation pending her results. We had her procedure scheduled for this Friday but it looks like they are rescheduling her to give her counts some more time to go back up. Since her ANC is zero it will be pointless to look at her cells for leukemia since there are not many to look at right now. We were hoping to get it done Friday but waiting will be fine too. I'm happy to be able to give her body some rest before starting another round of intense chemo. Even though she is going through all this tough treatment she is still high spirited, as usual.

We are spending lots of time at home this week since her numbers are so low. I don't think she minds much actually. She is happy to just be home from the hospital. Daniel heads back to work tomorrow so it will just be the kids and I during the day. William had a big day today in school. I got a message from his teacher that he is actually singing the full ABC song. We had him sing it with us at home too and he did so well! It's awesome to hear his voice forming letters and words. He's doing so great too.

So as of right now we are just waiting on count recovery and doing labs a few times a week. We may not have to go to Stanford too much since we can get all her labs and check ups done locally. Hoping to stay home as much as possible since the first week or so of consolidation will be spent inpatient. We are ready for that so we are enjoying our time home now! Keep those prayers coming for Jill. She's still hanging tough but can use all your prayers and blessings! Thank you to everyone who is still following her story. I will continue to keep everyone updated as treatment goes on!

Going home

We have been here for a week and half and Jillian has finally reached about 500 so they are allowing us to go home today! Super excited. Jill is so happy to be a me to see her daddy and her brother. She's doing so well. We will not have to be back till Friday for her last dose of chemo for induction. That chemo will take all day but it will be fine. Hopefully we won't have to be inpatient for a while. We need the comforts of home to reenergize! Thanks for all your prayers?

We roamed around a lot this time in the hospital. Discovered the stairwells. Jilly was a bit scared but they were really cool. She ran around the hospital and just enjoyed herself. We did a lot of art work and she actually saved the princess in super mario brothers! She was happy all week but even happier to be going home!

Long long days

It's been a week and we are still here In Stanford. It's been a few days with it being just Jill and I. It's hard being here alone with her since I really can't leave and if I need to a nurse has to sit with her. I have been making her go on long walks around the hospital so she gets some exercise in. We go to the play room on a daily basis if not twice a day. We also go to the library a lot and check out books and movies. She's doing really well this time. She looks great still and most of her flu symptoms have gone except for her cough. All we are doing is waiting for her ANC to go up. She is sitting at about 52 today and all her other numbers are staying the same as well. We are only testing her blood every other day now because everyday probably won't show any major results. It's discouraging but also encouraging since low numbers mean the chemo is working. Wish we could have rode out her low numbers back at home! We will probably be here throughout the weekend and maybe into next week. I received the roadmap for next months treatment today. Depending on her bone marrow aspiration after this month she will be in consolidation which is the phase that will work to keep her in remission. After consolidation then it is maintenance. It's our goal to get her there and she is definitely well on her way! The first week of her next month will require her to be inpatient to receive all her chemo so I'm hoping to be able to get home before that starts so we can at least have a break from the hospital! Although we love everyone that we work with up here, the doctors and nurses have been amazing, we are both very homesick and miss our boys very much. Can't wait to get home!

Yesterday when I was face timing with William Daniel had a wonderful surprise for me. William is actually saying his name! It sounds so beautiful coming out of his mouth and I am so happy he is progressing everyday even though our life is chaos right now! His teacher also mentioned that he was singing his ABCs in class today too. He loves his ABCs I'm so happy to hear that he is doing so well. It's very tough for me to not be there with him when before jilly got cancer my whole life was autism. I was that mom who was always there for him and now I barely get to take him to school. I miss being able to do that for him and hoping soon I can be there for him too.

So were still stuck here for at least a few more days. Send Jill all your prayers tonight for her numbers to go up! The nurses tell us that we need to do the ANC dance so Jill and I are very tempted to dance around our bed chanting an ANC song! Anything to get her numbers up! Hope everyone is well!

Still in Stanford

Well we are still here in Stanford. They were hoping we would be discharged on Saturday but that was not the case. Jillian's numbers have continued to drop and her ANC is now at 26. Since her numbers are dropping they want to continue to watch her. They are afraid that she may have caught another virus when she had the flu and her immune system was suppressed. So she is still on antibiotics as we wait for her counts to rise. Going a bit stir crazy here since today was the first day she was even aloud to leave the room. Because she tested positive for the flu b virus she had to be quarantined in her room from all other patients. Since its been a few days and she was on tamiflu and basically shows no signs of the flu anymore they have aloud her to leave her room masked. So we went in a long walk today. I am hoping that getting her up and about with some exercise will help get her numbers up. She had a lumbar puncture today to get chemo in her spine. Everything went great just like her past procedures. She is starting back on the chemo she had to take a week off from. We are happy to be getting back on the treatment plan but a little worried it will effect her numbers more and then we will be stuck here longer. We usually can ride out nuetropenia at home but since she had a fever we have to stay till her number start going up. We don't even need to reach 500 this time. They just want to see some progress. Unfortunately her numbers are going in the wrong direction! Send Jill all your prayers to help get her home.

Daniel has been able to be here with us for a few days. William has been staying over at my moms. I think he will be going back home tomorrow so he can watch William for a few days before he has to go back to work. I was looking forward to Daniels week off since we don't get to spend that much time with him and this week off was spent inpatient! We are lucky to be able to have him up here for a few days at least. This is only because I have amazing parents who watch William for us. Jilly is holding up as usual. By the looks of her she does not look sick enough to be here. She has been entertaining herself watching movies and playing on her iPad. I have been buying her kindergarten activity books to keep her mind stimulated. We're not sure what next year holds for her as far as school goes but I want to make sure she is ahead of the game if she goes back to school. She's so dang smart she probably won't have any issues! It's not fun trying to make a four year old "study" but she is doing a good job. I will try to post more when I can. My blogging is starting to slow down because there's not all that much going on. I will keep everyone updated on when she can go home! I hope everyone had a fun Super Bowl Sunday. We watched some of the game, there are a lot of niner fans up in this area. It's been nice resting and rebooting but I am sure ready to get back home!

Inpatient

The flu caused for an inpatient visit to Stanford. Jillys counts dropped on Thursday when we were at the hospital getting a blood transfusion. So they decided to ambulance her up to Stanford to keep a closer eye on her. Her ANC dropped to 100 but she no longer has her fever. She is fighting a really nasty cough though. I'm sure it's just symptoms of the flu. She is holding up as usual and the doctors mentioned that she doesn't even look sick enough to be in the hospital! So they said if her counts go up tomorrow and she is still looking good that we will be able to head home tomorrow! It was a nice break coming up here and I was even able to get some sleep but we would so rather be at home! Daniel and William are going to head up here tonight to visit with us and stay the night. If we are lucky and her counts look good then they can take us home tomorrow! Unfortunately we will have to be back Monday for her lumbar puncture but at least we will have a day at home. We got to visit with lots of our favorite nurses who we don't usually get to see because we are never inpatient. It's been nice getting some rest.

Since i haven't gotten a chance to blog lately I haven't been able to thank a few donors. Santa Maria breakfast rotary and noon time rotary made an amazing donation to Jillian. We are so sorry she wasn't able to stop by and see everyone when you issued her check. We were hoping she would be up for it but her counts were low that day and she had to stay away from people. Hope we can come by and visit everyone one day! Thank you all so much! I hope everyone understands how much your donations are helping us. We are able to just send checks out whenever we get medical bills without worrying about having to set up payment plans and such. It's been such a relief! Thank you all!