Curse you flu season!

I have been away much longer than I had hoped. Unfortunately I was in bed for the last three days battling the flu. If it was not for my Mom I do not know how I would have survived this sickness! I don't believe I have ever been this sick before and I truly hope to never again be this sick. The flu just plain sucks. We were lucky enough to hear that Jillians counts went up a bit so she was not at severe risk if she contracted my sickness. But as of right now she is running a low fever and battling a cough herself. I have made many many calls to the oncologist in Stanford and am awaiting their decision on what our next steps will be. They want me to check her temp again tonight and hopefully it will have went down or at least stayed the same. Worst case scenario for tonight is that they tell us to go to the ER to get her numbers checked again, if her counts are still good and her temp doesn't go up anymore then she will be able to ride out the fever at home in hopes that her immune system is good enough to beat whatever she has. If her counts are low then she will be sent to Stanford to be watched more carefully. They put Jillian on Tamiflu to help prevent her from getting the flu and which sucks more is that she is scheduled to get her flu shot tomorrow! Pray that she does not get anything close to what I had because then we will be dealing with something fierce! Daniel and William are also starting to get symptoms of something too. I may be having to take care of all three of them. No fun here at the Garcia house!

Other than our sickness Jillians mood has been great. She is showing no major signs of feeling unwell so thats always a plus. The doctors are keeping her accessed so i can give her an anti-fungal medicine to help with contracting a fungal infections so everyday i get to play nurse once again and hook her port up to an IV bag of medicine and give it to get that way. By far this is the most stressed I have been giving her any meds. I feel as though I should be more trained in nursing to be given this responsibility and it can be very overwhelming. So far I don't believe I have screwed up yet but other than watching the nurses in the hospital I have absolutely no training what so ever! The last time I held a job that was of any major importance was in the Navy and I was an aircraft mechanic. Nursing was far from any skills I obtained. But if anyone is going to do it its going to be me.
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Instead of deleting those last paragraphs I decided to just keep them and continue to update. After writing that bit I went to check up on Jill and her fever spiked so we had to call Stanford to see what to do. They decided that they wanted her to go to the ER to get her counts checked and see how at risk she was with the fever. So Jill and I drove up to San Luis while William headed to my moms because Daniel leaves for work so early in the morning. If they decided to send Jill up to Stanford we didn't want William to have to get up so early with his dad. So Jill and I spent a few hours in the ER where we got to see many familiar faces from the very first night of our diagnosis. It was nice to be able to see everyone and let them know that Jill was doing well. I was able to redeem myself considering I was a mess the first night they met me. They saw me at my utter worst that night and last night they were able to see me at my best. Jill's counts came back great (other than her platelets which are now bottoming out at 14,000) her ANC was over 2000 last night so they let us go home and give her some Tylenol in hopes that whatever she has her immune system is strong enough to fight.

She did great for the rest of the night but today she continues to go up and down with her temp. We went and saw our nurse practitioner (Mary) who I believe is a godsend and I absolutely love her. We are so lucky to be able to have her here to be our middle woman with Stanford. She alone allows us to remain at home so much more than we would have been able to and we are so very lucky to be working with her! So we got to see her again today and we did more blood work to see if jilly would be able to head to Stanford tomorrow for her scheduled lumbar puncture and chemo. Unfortunately her platelets came back low again so they decided to cancel chemo for the week in hopes that Jill's counts will recover on their own. I should be finishing this blog up in Stanford right now and not laying down next to Jill's bed as she goes to sleep because she insists she is "scared" now to fall asleep in her own in her room, and its hard to say no to a four year old with cancer! So Jill and I get a bit of a break off from driving up north this week. Our plan now is to see Mary on Thursday and see where her counts are then and depending on her number we should start back up with her regular treatment plan on Monday. It's nice to get a bit of a break but veering off course with her treatment isn't something we are very excited about. As far as her fever goes we are not out of the woods yet. We may still be heading up to the ER tonight of she spikes another fever. That would be another long night for all of us! So if you see a black dodge magnum speeding north on the 101 then move aside because Jill and I will be on a mission to the ER!

William had a doctors visit today and my poor baby had to get the flu shot. It's always so heartbreaking seeing him cry with his big tears and his sad face. He was pretty mad to be getting a shot and it took a lot of us to hold him down. If anyone knows William then they know the size of that boy! He's not a small kid. He's still adjusting to this new life we have all found ourselves in. I still think we all are. It's seems to be hardest for him to adjust since he is the one who has to hop back and forth from his home and grandmas. Luckily it's only been like once a week which isn't too bad. And on the days Daniel doesn't work he stays with William and Jill and I just go up. He's having a rough few days at school but that's typical of any kid and especially special needs children. We should be getting his services started back up soon and I'm excited to get back to work with that! I know it's only going to be more hectic schedules and busier days but it will be nice to see our girls again and get back to work! I know William will love it.

We're in a bit of a funk with illnesses in our household right now so we can use all your amazing prayers to help us get through this. Two months ago this just would have been a typical "off" week for us but now fevers are so serious. Jill's hanging in their tonight but once her Tylenol wears off I'm not sure what type of temperature we will be dealing with. Pray that its normal! I hope everyone continuing to read my blog is doing well and healthy. Ill continue to write as much as I can. Even though Jill's a bit sick she's still doing amazing! Hope everyone else is as well!

We're neutropenic

Had a nice visit up to Stanford this week. Got some not so great results but the trip went well. As of right now Jillian has low counts. Her ANC is at 290, it went way down. Her hemoglobin was low enough to warrant a transfusion so here we are this morning at Sierra Vista waiting to get some blood. She is not running a fever so we didn't have to stay in Stanford but if she gets a fever then she will be admitted. We are so happy to have the facilities here in SLO to get her the medical treatment she needs such as a transfusion. So happy we didn't have to stay in Stanford for the week. They left Jill accessed on her port and she will probably remain accessed for the remainder of her treatment because she needs a certain medicine that can only be administered through her port. Which means more work for me!

Jill had a rough night last night. She threw up her last chemo for the night so we had to give it to her again. Then she woke up a few times vomiting. Lots of back rubbing and blanket washing. She then woke up this morning screaming about leg pain and wanting Tylenol. She had about a 30 minute melt down about wanting the medicine but screaming that it was yucky. I, myself, was not quiet awake yet so I just sat there listening and watching her scream as she battled with herself on whether or not she wanted to take her medicine or just deal with the leg pain. Exhausting morning and we were actually a bit late to the hospital. I just need a nap.

Her transfusion is going to take a little while but Daniel is here with us and we are so close to home so it doesn't seem so bad. William has a dentist appointment today too so I will be leaving here to take him there if Jill is not finished yet. It should be a not too busy week since Jill's counts re low. She will have to stay inside and away from most people this week until her counts go up. We do more blood work on Monday and the. She has another lumbar puncture on Tuesday pending her blood results. It's good that her counts are low right now because it means the chemo is working.

She's doing good still. We are just hanging out here until her blood comes in. It should be a mellow week, looking forward to it!

A lot to report!

Its been a few days since I have gotten a chance to sit down and blog our time. There has been a lot going on this week! Please know that if I don't get around to blogging everyday its usually a good thing. When there is not a lot going on then I do not have a whole lot to post. Its been a busy week for us but as far as Jillian's treatment and health has gone, she is doing quiet amazing. Its so great to see her transforming back to herself. She is starting to slim back down to her pre steroids look. Her face is looking slimmer and I can actually get her into her jeans again! No more wearing just stretchy pants. She can once again button her tummy into regular jeans. Hooray! I know its not a huge accomplishment but its nice to see my daughter coming back to us visually. Her hair is still holding up and most people who see her do not even notice a difference in it. She had such thick luscious hair and I think because of this even though she has lost so much of her hair she still looks like she has so much. Thank goodness for those Mexican genes for her thick hair! Its the small things we have to be happy about! 

Well this Saturday was the Dance for Jillian fundraiser and i have to say that it went truly amazing! Thank you thank you thank you to every single person who came to support Jillian and to everyone who participated in making that day such a success (especially the instructors and all the employees at Tantrum Fitness) You all are such great people. Ive said it many times before but we are so very blessed! Jillian and I were even on the news. Thank you KSBY for coming out and doing a story on my daughter. Its so nice to get Cancer Awareness out there. Everyone needs to know how important it is to support Cancer Awareness  and everyone who is diagnosed with cancer, because you never know when it could hit home. I would never in a million years have thought my family and i would be on this journey. Its an eye opener for us for sure. Be grateful for everyday you have and hug your children close because things can change in an instant! 

As far as my sanity goes i have been hanging on by threads. Jillian has definitely been giving us a run for our money when it comes to taking her meds. She has been fighting us every step of the way and it has been so mentally exhausting. We have tried everything to get her to accept the fact that she will be taking her meds for a very long time but every single day it is just as hard as the day before to get her to take them. If it continues to be a tough battle we may have to resort to putting a tube in her nose and giving her her meds that way. I really do not want to resort to a nose tube but i also cannot continue to fight with her everyday.We have tried teach her to swallow pills and nothing seems to work. Today we went to the store and bought her an award chart and a pretty cool treasure chest. I filled the chest up with wrapped up toys and every time she takes her medicine she earns a marble for her chart. When she fills them up she gets something from the chest. A typical reward system. As of right now she loves it but I'm not sure how it will work for the future. We will try anything so this is the next step as of right now! Pray for the patience to come out in me so i do not have to resort to putting a tube in my daughters nose! 

Daniel has been home this week. He worked a few days of overtime but he has a few days off. Having him here is so nice because i have some help. We tend to to really well together as a team and support each other as much as possible. This week Jillian has a doctors appointment in Stanford on Tuesday. My mom and I are leaving tomorrow to stay the night because her appointment is really early. Daniel will be staying here with William so we are both not leaving him. We know he is having a hard time when we both are gone so hopefully this will help him. Its hard leaving him but at least this week it will only be for a day and half. 

Its been a good mellow busy week. I feel like we had so much going on but i think we just got back to normal this week. Jillian was her typical four year old self and it was great to see her happy and enjoying her childhood. She got to see some of her friends from school this week and had so much fun running around with them. We were able to spend time as a family this week and just do family stuff. No hospitals, doctors or stress. Just normalcy. So very nice! 

We got some more dinners this week from some great cooks! I don't think i thanked my wonderful BFF Ape for her awesome enchiladas she made us. Your going to have to make us some more soon!! Also to Miss Josie, Eva, Miss Sheere and Jewelee for taking time to think about us and get food to us. Thank you! Also a big thank you to Jillian's preschool New Life Preschool in Pismo Beach who gathered a very generous donation for Jillian. I couldn't believe the amount you raised when i opened the check! God Bless everyone who donated to us! I hope everyone had a great weekend and is enjoying a three day weekend. I am happy and content just being her with my amazing family and blessed that we had such a great week. NO FEVERS! All your prayers are working miracles so please keep them coming! Here are some pictures of the fundraiser and a few from our week. Have a happy Monday tomorrow! 

Quick update

Sorry, I have been away. I am neglecting Jillian's blog but I wanted to stop by really quick and give everyone an update. Her labs are great. We did blood work today in San Luis with a nurse practitioner and they all came back great. She is expecting Jillian's counts to fall because of her latest treatment and they could even bottom out at some point but as of right now everything still looks good. She's been in high spirits since we have been home. Getting back to normal and she is even asking when she can go back to school! I plan on asking the doctors but I'm sure they will say no. We will see. Ill leave you with some pictures of Jill this week. It's been a good one!

Another Lumbar Puncture

Well it's Monday and we are back in Stanford once again. Jillian is scheduled for another lumbar puncture as i stated in the last post. They want to give her chemo in her spine as preventive maintenance. This is the fifth time she will be put under which sucks since its only been a few weeks since her whole treatment started. Shes in high spirits even though she hasn't been able to eat anything since 6 last night. We keep on distracting her in hopes she will forget she is hungry. My good friend Teresa came up with us today to keep us company. Its been great spending time with her!

So i am writing this post on a brand new iPad that my amazing Tia Ruby and cousin Rosa bought for Jillian for her doctors visits. This thing is amazing and Jill and I want to say thank you so very much for the super extravagant gift! We love you all so much. Cant wait to spend more time with you all. Jilly misses MIa and soon we will have a girls date night! "I thaid i was thorry!" lol

The rummage sale this weekend went amazing. Thank you to everyone who either dropped anything off or went shopping. We couldn't be happier with the turn out. And remember this saturday is the Dance for JIllian Fundraiser at Tantrum Fitness. Go and take a class or go to win some amazing raffle prizes and there will also be a blood drive going on with a local truck there for anyone who wants to donate some well needed blood! We are hoping to be able to go this weekend so if you want to come see the amazing JIllian she will be there!

We should be getting some blood results back today since they did lab draws. I will let everyone know how her numbers are going when i know. Shes been doing so well so we are hoping for some good numbers!

Remission.... Why yes we are!

We are still here in Stanford getting Jillian's first dose of chemo for her second phase. I was unaware how long this dose would be so we probably will not be leaving till late. She has to get a lot of fluids along with the chemo so that's why it will be a longer day. This chemo is given on the first and last day of this phase. I'm glad we have company though!

We spoke with the doctor about her results on remission and she told us that Jillian is indeed in remission! How amazing it is to get these results. All her numbers went up this week as well. Even her hemoglobin so no transfusion for her. I can't believe how amazingly well Jillian is doing. Her ANC went up to 1700 so thats great too! Since we are now in remission it is our job to keep her this way. I have heard of children who have never relapsed from their first remission and it is my goal to make sure Jillian is one of those children! Her cancer will be gone for good and will never return. This phase of chemo looks like it will be an easier 28 days. She will still remain on dasatnib and I will also be giving her another chemo once a day for the month. She stays on septra for the weekends and there is a new drug they will have me administer at home. Four days a week I will have to poke her which I'm not super looking forward to but we will manage. The chemo she will be on for the month requires her to take on an empty stomach and he can't eat anything for an hour after. I think I'm looking forward to that medication less than poking her. She loves to eat and even though she is not on her steroids anymore she still has a healthy appetite. So it will be fun telling her she can't eat so I can give her her meds.

We come back to Stanford on Monday for a lumbar puncture to give her some chemo in her spine. It's a normal scheduled procedure but I was unaware we would have to be back so soon! No big deal but it will be another long drive. So far Jillian is doing awesome. Her central line is looking great and the doctor says everything is perfect! Thanks for all your prayers!

Don't forget that Jillian's rummage sale fundraiser is going on tomorrow at tantrum fitness in Grover beach. If anyone has anything they want to donate they can bring it to tantrum fitness or they can go shopping tomorrow! Thanks everyone!

Here's Jillian today getting her chemo and with her new bear Cinderella. She's such a trooper!

Pacific Christian

I gave thanks today to Jillian's cousin Mia's school for sending Jillian an awesome book full of get wells and god blesses. We got to fully go through it tonight and Jillian had so much fun looking at all the pictures. Every single child and adult who took time to make this for her is truly fantastic. Thanks so much again to everyone! Here is Jillian enjoying going through the book with her cousin and some fun pictures of our day today. She came out of surgery so great and was even up for a mall visit. Can't believe how well this child takes all her procedures. Where were to complications and her PICC line is out and her central port is in. We go back tomorrow for other procedures and results from her bone marrow biopsy and lumbar puncture.

Oh one of the pictures she took with a worker at the build a bear workshop. The kids got to make a bear today and they had such a great time. Brenda, the worker, was told by my cousin why we were here and Jillian's treatment she had this week. Brenda was such an amazing employee she took Jill over to the pj section and had her pick out some pjs and a blanket set for free. She said Jill's bear had to have pjs for when she was in the hospital. People like Brenda really make you realize how amazing people can be. It was such a caring thing she did for Jill and Jill was super excited. Thank you Brenda over at build a bear at hillside shopping center. You truly made my daughters day a bit brighter!

Central Line

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.

Back to school

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.

Lake Tahoe

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.

What a weekend!

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!