So long Sparkles!

It’s hard to believe that it is the end of 2012. I can honestly say that this year has kicked my ass. Well mostly just December. We had some amazing things happen to us this year, such as my wonderful husband graduating Cal Poly and getting hired by an amazing company. Then we were able to move closer to home and my kids both enrolled in two awesome schools. My son is so blessed to be in Miss Stephs class over at Grover Heights. They have been one of the consistent things in his life since this whole mess started. They are amazing teachers, every single one of them, and we are so lucky William has a safe, fun and educational place to go every day. I thank you, Miss Steph, for taking care of my baby when I could not be there for him. The pictures you sent me when I was away made my days and you seriously go above and beyond for your students. Every single one of those boys are blessed to have you for a teacher!(I hope you are following my blog J)

Jillian had an amazing day today. We got to spend most of the day with my parents and my niece and nephew. Jilly got to go out to pizza with her Papa and she had so much fun (although there was tons of washing of the hands and such) She did so well on her outings and still insists that her tummy doesn’t hurt and we are not seeing any other bad symptoms. We all went to toys r us and she picked out a toy that she had wanted and didn’t get for Christmas.We also got her one of the Brat dolls that are made especially for Cancer. The doll is awesome and comes bald and with a beanie. She really likes it and it is actually looking like she is excited about her hair loss. Which is REALLY starting to happen now. It’s tough to see clumps of hair fall out every time I brush it but we all knew this would happen.

We are very cautious about where we take her and we use lots of hand sanitizer and wipe down anything she may touch.  Hopefully she did not catch anything on her outings today. I don’t want to treat her like she has to be put in a bubble for the rest of her life and I want her to be able to do some of the same things she has done in the past. It’s no life if all you are worrying about is staying away from places and people. We use caution and I hope that is enough.

We love spending time with Jillys cousins. Jilly was acting silly with her cousin Sammy today at dinner (linner lol) it’s so nice to see when her personality is still there. Sometimes she looks so down and just not herself.But today that was not the case! Love these girls! Mrs. Napkin Head and The Walrus

We got our time and day for our next clinic visit. It’s on Wednesday at 10:30, which means another long early drive for Jill and I. I need to schedule these appointments later so we can get more sleep. But this just means we will be home later. We are just doing a check up with the doctor and some blood work. I’m confident all will go well and we will be home the same day.

So today is the last day with our kitty Sparkles. She is just too much to handle right now with everything else we have going on. Plus for some strange reason she scratched Jillian yesterday and broke skin. It wouldn’tbe that big of a deal but Jilly’s immune system is not where it should be and we do not want to risk any infections. So we are giving her away to a wonderful family, we are hoping she fits in perfectly with them and if she doesn’t they are so nice enough to find her a home. Just a headache thats hard to deal with right now. We are very sad to be getting rid of her because we really love Sparkles, had we known Jilly would have gotten sick we would have never adopted her. So long Sparkles! You were a great cat and will be dearly missed.Thank you to the Norling Family for taking in our kitty!

Thanks for the dinner

First off I wanted to say thanks so much to Melanie and her family for a great dinner tonight! How nice it is to not have to worry about making dinner and just throwing something in the oven. Jillian loved it. My mother also made us lasagna so I was able to make that along with your dish. I so appreciate the food, it really does make my day easier. Thanks sister for organizing the food calendar. If anyone is interested in participating please just email me at team.jilly4@gmail.com and I can forward your information to my sister.

Today was another slow day for us. I so love having Jillian home even if we lay around in our pjs all day. William was a bit difficult again. He gets really restless when we are home but I still get nervous taking Jillian out so I wanted to have a mellow day. William was not happy about that! Thank goodness my parents came to the rescue and picked William up and took him to their house for a while. Daniel is picking him on his way home from work. My niece Sammy came again for the week to help with William. We are so lucky she has given up her Christmas break to come and help us. She is studying to work with special needs kids and man does this girl have the patience for that line of work. Love you Sammy and I am looking forward to the help this week! William is still out of school till next Monday. I can’t wait for his school to start back up. He does so much better when he has his schedule with school and therapy. Once that starts all back up I’m hoping his behaviors will improve too.

I’m not sure when our next clinic visit is. I am guessing on Tuesday because they have not called yet. I’m hoping it is not tomorrow since we are so far away I hope they would be considerate enough to give us some heads up. Maybe they will only want to see us on Friday because Jillian is doing so well. I think I forgot to mention (sorry if I have already) that we received a few envelopes the day we went to Stanford for clinic. One was from Jillian’s amazing class from New Life Preschool. Ms. Sheere and all Jillian’s friends sent her a book, a picture they drew and some art. She loved seeing something from her school and I pointed at all the kids names and art work. She was really happy. Also we got an adorable butterfly that Jillian wants to put up in her room from Pat over at Cal Poly. Thank you for thinking about Jillian. She loves to receive mail and loved the butterfly!

I am not sure what is on the agenda for tomorrow. Jillian’s moods have been good and she has been feeling really well. Maybe a park adventure would be good for her. I enjoyed taking her to the park yesterday because she was able to exercise her leg more. It still hurts her and she cant keep up with her brother or cousin but at least she is walking on it. When we were at the hospital she didn’t want to walk from her bed to the bathroom, this is probably also because we spoiled her and held her everywhere. Since we have been home she is using it more so that’s great. Hoping as treatment continues the pain will get better.

A day at the park

We got to take jilly out today since she is doing so well and her numbers look good. The doctor told me yesterday as long as we keep her from anyone who is sick and big crowds that she can go anywhere. It was so nice taking her out and visiting with her Tia Ruby, Tio Michael and cousin Teo. You can still see that she is sick but she keeps telling me that her head is fine and she doesn't have a stomach ache. I'm shocked how well she is taking all this. She's such a champ! Here's our fun day at the park feeding the ducks and playing.

Day 22

Jill and I are back up in Stanford for our first clinic day. It's been taking a while but I think it's just because its our first one. She's doing ok right now. Hooked up and about to receive her chemo. It's not a long process, just about five minutes but getting the process going is taking a while. Once we finish this then she has to get her PICC line dressing changed and that will be a huge ordeal. She's fine getting her medicine but having tape peeled off her skin is so traumatizing!

As I sit here watching her as she gets her chemo I can't help but feel like the mother from the movie "my sisters keeper". Being a cancer mom requires a lot of waiting and just supporting Jillian. It's hard to only be able to sit here and watch, I can't imagine how everything is on her. She's so amazing how she is responding to everything. If you haven't seen that movie then check it out. It's such a great movie but very sad, I doubt I will ever have the courage to watch it again now that we are living it.

We passed the room we spent almost a month in and Jillian starting crying that she wanted to go home. I felt bad for her and just kept telling her we weren't staying, just getting medicine. I know how she feels though! Her check up with the doctor went really well. Her ANC was right, I wanted to make sure it wasn't a mistake because her number went up so much. The doc said that when her bone marrow works correctly then her ANC will go up, she obviously couldn't say for sure but she thinks Jill's leukemia cells may be getting lower and lower since her count went up so much. We won't know for sure until se gets her bone marrow checked in a week but that's great news so far.

We should be heading out a Palo Alto soon. They want us to return in the middle of the week. During induction they want to see us twice a week. We only have a week left of induction so it's no big deal. Ill let everyone know how the rest of the day goes. Here's Jill on our way to Stanford and getting her chemo.

Another long night

Well my night off turned into a 230am wake up call to a sick little boy. William woke up throwing up everywhere last night. I stayed up with him rubbing his back as he vomited. Then we both came down stairs to lay down on the couch so I wouldn't have to do any major cleaning up upstairs if he puked again. Which meant getting practically no sleep from 230 on. Which totally sucked but I would say Daniel had it worse since he headed back to work today. I ended up switching kids out and took William to my moms and picked Jillian up. I wanted to make sure to keep them far apart because I am not sure why William was throwing up. He was fine for the rest of the day but why risk it. Plus Jill and I have to leave super early to Stanford so it's better of William just stayed the night at my moms.

Jilly had her first visit with our in home nurse today. He will come weekly to do blood work on her and to check her PICC line. We haven't received the blood work yet and I am hoping to get a call back tonight to see where she is at. I would like to have an idea on what tomorrow will hold. Fingers crossed we will just go up and head right back down. It would be nice to be here for the weekend and so much easier on my family. Everyone has really stepped up with watching William but he can be really difficult so I am hoping to be able to be here to have him. Can't wait till he goes back to school on the 7th. He needs that structure school gives him and it just sets him up to have a better day. I hope we can get through next week without too much bad behavior.

Sooooo.....!!!!! I just got a call from the on call doctor from Stanford and she got Jillian's blood results. Looks like her ANC count went up to 1500!!! I was a bit in shock and had to ask her to repeat the results because her number went up so much but it was right. I am so utterly happy for her right now. 1500 may not be the highest that her ANC can go but at least now she isnt at 0. All her other numbers went up as well so from the look of her blood work we will most likely be going up and just coming home. I am so excited :-)

Here's Jill with her kitty and her new belly. Can't believe how much the steroids are making her bloat. And Jill with her new kitchen that Santa bought her. Love this girl!

Alone tonight

I finally got some time to sit down and write about our day. Jillian stayed the night at her grandmas tonight, which makes me very nervous and scared but my parents are amazing and I know she will be fine. My most concern is if she spikes a fever, we aren't very far away so even if something did happen it would take us five minutes to get to her. I showed my mom how to give her her medicine and its a bit of a relief to actually have a night off. I'm wondering how I'm going to do sleeping tonight since I have been sleeping with her for about a month now. I think I'm going to miss her more than she will miss me! But she finally has her grandma to hold her the way she likes because i just don't do it right!

I was a bit worried about her today because she just overall looks sick. Just being a mother makes you concerned when your child doesn't look right. I need to remember that she is in so many types of drugs that are just going to make her ill all day and that it is normal. But it's hard to see in her eyes that she just doesn't feel good. You want to make her feel better but the medicine that she has to take is necessary and will eventually make her feel better. She's a tough girl and will get through it.

She looks so different now. She waddles everywhere she goes because the steroids are making her tummy bigger. I was worried it was a side effect that wasnt normal and she may be backed up because some of the medicine can make you constipated but after asking a few friends whose children are going through the same thing they all say its just the steroids. She will get round in the face too. It's adorable to see her walk around all belly heavy. She doesn't look like the same girl and the steroids have changed her behaviors a bit too but she will always be our jilly bean. We're still having a hard time getting her to take her medicine. I'm hoping now that we are home that we will come up with better ways to "trick" her into taking all her meds. Any tips would be great because I'm tired of fighting with her every night!

We received a few more donations today and I wanted to say thanks to my bestest friend April for gathering up a donation for us. You are an amazing friend and its great to know I can count on you for anything! Sorry I ruined your December 30th surprise! Also to my sisters best friend Jewelee and her husband Nick and their family. Thank you so much for thinking about us and for your donation as well as to your parents Donna and Jesse, whether its for an autism walk or leukemia we can always count on all of you! AND another thanks to Cynthia and Christina Camacho and Rosie their mom for their donation to Jillian. Can't believe you sent more to her after that amazing box full of movies! So awesome! Love you all. Also we received such an amazing package before we left the hospital from Jeana Berry and her family. They sent Jillian an awesome cancer doll whose hair can be removed and it teaches her about her illness. Jillian thought it was so cool that we could remove her hair. It was so nice to show her what will happen. Thank you so very much!

So far so good

Well Jillian held up really nicely today. I think we were a bit over kill when it came to checking her fever. But I think we will probably be that way for a long time. She stayed at about 97.5 all day but tonight when we checked her she was pushing 98.6 this temp scares us but its pretty normal. I packed us both up just in case we have to leave tonight. Better to be prepared then not to be. Even if she does amazing all week we will be back to Stanford on Friday for regular clinic for chemo. Depending on her numbers and temp we may or may not be admitted. I'm hoping she will do so well that we will be back here Friday night! Keep those prayers going.

Christmas today was great. William has definitely been more on the difficult side since we have been back and this is probably due to the fact that we basically abandoned him in the middle of the night. We think he is just pissed at us. On December 4th I put him to sleep and then didn't return home for three weeks. I would be pretty mad too if that happened to me. So I sat him down today and had a little talk with him just apologizing for everything and trying to explain to him that his sister is sick. I'm not sure how much he understood of what I told him but afterwards his behavior was not as bad. We just need to get back into our regular schedule and I hope his behavior will improve.

The kids got so much great stuff for Christmas. They were very spoiled by all their family. William had a fun time just unwrapping all the presents (even other people's) and not even paying much attention to what the actual gift was. I think he just really enjoyed the tearing sounds. Jillian loved everything and had a lot of fun visiting with her cousin and her family. She hasn't seen everyone in so long so she just took it easy and hung out. She is still having a hard time walking and gets tired quickly. She has a difficult time going up the three stairs from my parents family room to their living room, which makes me think a move for us is probably necessary now because of the fact that we live in a three story town home. She cannot walk up our stairs now and as treatment continues I'm sure she will just get weaker and weaker.

We are still having a hard time getting her to take some of her meds. We basically had a screaming match today because she refused to drink her apple juice with her medicine in it. We are limited to what we can do with that medicine (the most important medicine by the way) we can't crush it so we can do what we do for her other medicine. She can't bite into it, it must be dissolved some how. So I dissolve it in apple juice but she can still taste the medicine so she hates it. It's just a battle that we have every night. The bad thing is that her medicine has to be taken at a certain time everyday and if we fight for an hour for her to take it she messes up the time schedule. It's exhausting!

The great thing about today is that Jillian was happy. I'm having a hard time adjusting back to reality and I hope my life goes back to normal soon. In a way it was a lot easy at the hospital. I didn't have to worry about anything but taking care of Jillian. Now that I'm home it's back to taking care of the house, William, the cat, all my old responsibilities PLUS the Ton of new ones that have bestowed upon me because of leukemia. It's so stressful to think that I am now the one who has to be the pharmacist and the doctors. I have to clean her PICC line every day by flushing it out and if I mess up anything it's right on back to the hospital we go. And I have to give her all her meds, what if I mess up and overdose her or something. It's scary to think about all the things that could go wrong, I need to just focus on getting the job done and making sure its right. It can feel like so much pressure, I know though within time it will get easier. Lets hope.

I leave you with some pictures from Christmas today. I hope everyone had a great one!!

Home Sweet Home

We are finally home. It feels so nice to be laying in my own bed (granted jilly is laying right in between us) I have a feeling Daniel and I will not be sleeping alone for a while. We have to monitor her and make sure she doesn't get a fever, if she does then we will be right back to Stanford. She is so happy to be home and was really excited to see her family. She hadn't seen her Papa since I took her in the dead of the night on December 4th and he stayed here to watch William. It feels so long ago and when I look back on how easy life was pre-leukemia, it makes me sad to know things will never be that easy again. She will be sick for a very long time and will always run the risk of being prone to cancer. Especially because of the all the chemo and drugs she is taking now, it's sad to read that the drugs that are given to her to cure her cancer can in fact give her another form of cancer! No need to dwell on that now though, it's one day at time.

So if we remain fever free then we will only need to be back to Stanford on Friday. Depending on how her counts are then, we may be able to just go up and do her treatment and then come home. I hope it's an easy day that day. Staying in the hospital is seriously exhausting. I know being home will really help her gain back her life and help her fight harder. Everyone feels better when they are home. She got to see her cat, sparkles, today and she was really happy. I swear this cat has gained ten pounds since we have been gone. Thanks to my family who have come over everyday to feed her. We are very grateful!

We got home a little later than I hoped so I had to finish up the rest of Christmas. There still were gifts that were not wrapped, I was lucky enough to be pretty much done with the kids gifts before all this mess started so tomorrow should be a good day for them. As far as Daniel and I go, we got our Christmas wish today! Our little family of four is finally back together. :-) jilly really wanted to make santa cupcakes for Christmas so we did that before bed time. Now I'm a bit sugar full from having to take bites from them because she wanted to make him four cupcakes. Cupcakes and milk this year for Santa, looks like a new tradition.

Even though we are home we could still use many of your amazing prayers (which I'm certain got us home today!) pray that Jillian remains fever free this week so she can actually spend a few days at home with her family. Pray that I paid enough attention through all my training and I will administer all her meds correctly and that I will keep her from getting an infection through her PICC line! And pray that after our induction phase is over that Jillian will be cancer free and in remission! Thanks to everyone for all the well wishes. We are so happy to be home, even of its only for a few days. Merry Christmas to everyone and I hope it's a wonderful day for you all tomorrow.

Here's jilly helping us pack, getting to the car, with her cupcakes and her huge dog her Tia ruby got her. She loves it.

GUESS WHAT!

WE ARE COMING HOME FOR CHRISTMAS! Leaving here in a few minutes. Jilly is so happy and we are so excited! Thanks to everyone for all your prayers!

Exhausted

I'm finding today to be very exhausting. It could be the fact that its just Jill and I here today but its not like our day had any strenuous activities going on. Could just be that I am mentally exhausted and that its coming on day 20 of being in the hospital tomorrow. Could be that I have been so far away from my son for so long and I am longing for the mundane life we had three weeks ago. I don't know exactly what it is but man I'm I tired. I am barely even getting around to blogging today and I was half tempted to just skip it all together.

Jill and I had a very relaxed day. We went on a few walks, did a couple of activities and just hung out. I made her walk more on her leg to exercise it. It still hurts her but the doctors say its good for her to walk on it. I think the chemo is really helping too. She was fun today, still high spirits and a good appetite. She asked for her dad and grandma all day and is excited that her dad decided to head back here tonight rather than waiting till tomorrow. Looks like he is bringing some Christmas gifts so we can celebrate Christmas a little here. I don't think she needs anything else but we don't just want to treat it like another day. Tuesday should be special even if we are stuck here. She's been a lot more tired today than she was the last few days. I worry now that when fatigue sets in that it has to be because of low counts somewhere. I would have required them to do some blood work but we are scheduled for it tonight anyways. Crossing my fingers for good numbers.

My brother in law, Michael, stopped by tonight and Jillian was really excited to see her Tio. He brought many gifts from the Gamboa family and Jillian wanted to say thanks to Miss Josie, Jandro, Adrian and Mateos Tia Rosa for the many things they got her! We appreciate everything. It was nice to have some company for the short while and great to see a familiar face. Thanks for coming by.

We got a few things in the mail yesterday that I forgot to mention. Thanks for the Christmas cards from Reed (it was very heartfelt!) and from Diana Aldrich and her family! Jillian loved the pictures from the kids and they are hanging up in her room. Thanks for thinking about us. So glad that we have remained friends after all these years.

As far as news from the doctors go, there wasn't too much today. The attending on this week came by and basically told me that Jillian's looking good and responding to treatment really well. They haven't found any blasts in her blood lately so that's a great thing. She pretty much told me to get ready to fight like hell these next couple of years and that its going to be a hard road but Jillian's prognosis is good. Lets hope! We are ready for the fight and Jillian is feisty enough to take this thing on. :-) blood work comes back in the morning so we will know what her numbers look like then. Till then I just want to wish everyone a very merry Christmas Eve eve.

Here's Jillian opening her gifts and her pictures from Jack and Allison.

Jillian singing

 

 

Im trying to post a video of Jillian singing to Hercules "I wont say im in love" I hope it works. Such an awesome video!

 

Great News Everyone!

Great new tonight everyone! So the doctors decided to check Jillians blood just as I stated in the last post anddddd……… HER ANC WENT UP TO 150! Now I know that isn’t the greatest jump or anywhere near where her ANC should be but man are we happy! It’s so awesome to see her numbers going up and not going down. But considering we were at zero I don’t know how it could have gotten worse. Also because her hemoglobin was down and she had to get a transfusion (which is why they checked her blood today) we saw that her hemoglobin also went up. AND her platelets went up about 50,000 counts. So awesome, I was so happy with her count tonight, even though her white blood count went down we were still ecstatic about all her other numbers. We know that we have to expect her numbers to fluctuate every day, especially because she is on chemo, but we have to appreciate the days that she has the good number. Hooray for today!

So tomorrow marks the first day that Jillian and I will be at the hospital solo. Daniel is taking my mom back tomorrow and he will be staying the night so William can be at home for a night. I can’t imagine how hard it is on William and the fact that he cannot express his frustration or his feelings makes it so much harder on us. So I think it will be so great for him to spend a night in his own room and to be able to be with his dad. Jill and I are prepared to be here, just us two, and it will be good for us because we may be spending a lot of time when it will just be us. And because of all the amazing people who have given Jilly so much to do, we will be entertained all day!

Today we met another mom whose son was just diagnosed with ALL, along with ALL he also has another diagnosis that is not similar to Jillians but does put him in a higher risk category. It was nice to meet another mom, but hard to see her suffer with accepting his diagnosis. They are on day two of their treatment and just remembering what it was like for us at day two is just overwhelming. I already feel like a veteran here! And I barely know what I’m doing! I would love to try and help her as much as possible but at this point in Jillians treatment I just don’t know if I have the energy to pay it forward yet! Once Jill is in remission and doing well then I think it will be a good time to see about helping other families too. Her son is truly amazing as well, we got meet him and to meet a child who is a little older and understands more is comforting. He was such a cool kid, I hope everything works out for them. Keep them in your prayers as well everyone!

Considering Jillians age we often don’t realize how much she is listening to everything and understanding more than we think. When Daniel and I went out for a few hours today she asked her grandma to take her for a walk. Now going on a walk is not an easy thing to do with a sick child. They have to be bundled up and Jillian cannot leave the room without her mask on. So grandma got her all ready to go BUT forgot to put Jillians mask on right before they were about to leave. Jillian says to her grandma “my mask!” and then she tells her “the doctors going to get mad at you!” haha. Its so funny to hear that a four year is making sure to prevent herself from getting any sicker. She is listening to everything! Jillian is truly so amazing and she is making this whole ordeal easier on everyone. She still misses home and most of all her brother but she is hanging in there! We do more blood work on Monday, Christmas Eve, maybe we will get lucky and Santa will bring me a good ANC count for Christmas!

A day away

Today has been a great day so far. Jillian has been in such a great mood and hasn't been feeling too sick. She was feeling a little ill last night but woke up happy. Daniel and I got to go out for a few hours while my mom watched Jillian. It was so nice to get away but also a bit difficult leaving her. It sucks that she cannot leave the hospital and we are going on three weeks now! I just want to get her out just to get some fresh air but we can't risk it. They are taking some blood today to do a CBC (complete blood count) so we should get an idea on what her counts look like today. We are pretty sure that her ANC will have gone up because of the blood transfusion. Even if it is up to 500 we will most likely have to stay anyways. All the chemo she did yesterday will bring her counts down too so we will have to just monitor her.

The hospital is quiet today because its Saturday. We love the weekends here because its not so crazy busy! My mom heads home tomorrow which sucks but she has to be home for Christmas. William is going to stay in Santa Maria for Christmas and we will be up here. We will miss him but he will have a blast with his grandparents! Ill update everyone later when we see how the night goes!

Ken and Tina

We had a few more visitors today. Ken and Tina Whalen drove all the way up from Lompoc to come and bring Jillian many many gifts as well as the donations that they have raised so far with their fundraisers. Now I know I have stressed the fact that my husband works for an amazing company but I don’t believe anyone truly understands just how amazing ExxonMobil really is. We are in shock about how generous of a donation they have raised so far and the fundraiser is not even over yet! Ken and Tina are an AMAZING couple who have spent multiple hours and time supporting Jillian. Tina has made dozens and dozens of jars of salsa for her salsa fundraiser and I can’t even imagine what it has cost her to do that. Ken has harassed and bugged so many employees at work to support Jillian and the outcome is INSANE! So I say a HUGE thank you to Ken and Tina for being two of the most kindness people we have ever met. It was so much fun just sitting there and talking with you. When all this is over and we are home we are looking forward to that play day with your beautiful granddaughter! Also big thanks to your family who have also put together gifts not only for Jillian but for myself as well. Truly awesome people! Without the support of all the ExxonMobil family and employees you would not have been able to raise what you have raised. So thank you also to everyone who has participated so far in Jillian’s fundraiser, we CANNOT stress our gratitude to you all!

Jillian has had a good day today so far. She is behind on some of her meds so we are just waiting until they get here and then we will see how she responds to them. She is still totally in love with her hair, which I am so in love with too. We seriously should have cut it sooner!

Jillian has had a blast having her grandma here all day and it really puts me in a better mood having her close too. Too bad she cannot stay this whole time! Here are the two of them goofy around together. I believe grandma is trying to stab her with her fake sword and Jillian is trying to stop her!

Daniel stayed in my mom’s hotel last night so he could get a good night’s rest. He came back looking like this. Supporting his daughter but now I need to get used to it!

HAIRCUT!

So Jillian let me cut her hair today! I can’t believe that this child could look any more beautiful than she was. Her haircut looks amazing and she loves it. It was so adorable to see her look at herself in the mirror in shock on how different she looked but she absolutely loved it. Thank goodness because there was no putting it back on! We got to keep a pony tail amount of it to save for her when she gets older. Here is the process of the haircut!

 

Jillian also got a package today FULL of all her favorite movies from Cynthia Camacho and her amazing family! Thank you all so much for thinking about Jillian, she is already watching her movies and loves all of them. We appreciate the gift so much!

Breakfast of Champions!

Today's a big day! Lots of new drugs and old drugs and just a ton of drugs. It's depressing to think she is going to be bombarded with all this toxic stuff but I can't help but to be grateful that all this medicine is here to help her in the first place. What would we have done if none of this stuff was even here. Her spirits are high this morning because grandma is here and man does she love her grandma!! She is starting the day off with a good hearty breakfast and she's ready to take on this day. We have lots of new stuff to entertain her with. I'm hoping this will help her through any sickness she may feel from the drugs. Most important is that she's starting the dasatnib and this is the drug that is supposed to give her the best outcome for the Ph+. Pray it works! We found out this morning too that she has the common form of Ph+ and not the rare version. Thank goodness. With her luck I was guessing she was going to have the rare form of everything but all your prayers are working and it looks good here. Ill keep everyone updated as the day goes on. Happy Friday!

A day of traveling

Sorry for the late post. I spent the whole day traveling to Santa Maria and back. Picked up my mother and we are back here with Jilly. It was hard leaving her all day, she called me a few times and once she was crying. I don’t think I will be leaving her again. It was nice to get a bit of a break even if it was spent in the car most of the day. I got to see William which was awesome. That kid looked like he grew a two feet! He is huge. I guess when you go weeks without seeing your kid they don’t look the same way as you remember. Can’t wait to head back home again! This time I’m not leaving without Jilly!

We got some results back today. Our second opinion test for the Ph+ came back positive, again. We were hoping for different results but were ready for the same. It’s still hard to fathom the fact that our baby is sick but she is and we will just get through it. Her ANC came back zero this morning. Which means she has basically no immune system, again. We had a rough night last night. She did her blood work and her hemoglobin came back low. Which meant she got a blood transfusion last night. She responded fine to the transfusion but I was up most the night watching her and reading her test results. The doctors told me to not worry too much about her number being zero. Apparently this is just the way chemo works. Her numbers will bottom out and she will need a transfusion then her number will go back up. This whole mess is exhausting but im sure we will get used to it.

Jilly and her dad spent the day together while I was gone and they met Willie Mays. Daniel did not remember to take a picture BUT we did get an autograph. He said Jilly wasn’t too excited about meeting him, lol but Daniel was super stoked! Here’s his autograph!

 

So I was told today that I have many readers following Jillians story. I was not aware of how much support and readers I have! Thank you to everyone who has followed us. I will try to post daily but I am sure everyone understands it can get difficult on some days. And some days there’s not much going on! Thanks for the visit today Nat and Martha! It was great seeing you. Sorry William was so dang aggressive! And thanks for all the fun stuff you gave Jillian. Another thanks to Rosa, Mia, Breezy and my Tia for all the stuff you sent her as well. She is such a lucky girl! Also if the Jessups are following us I just want to let you know we received your package today when I got home and we just want to say thanks as well for your gift for the kids! We appreciate everything. One last thanks to the awesome Christmas card we got from the Tomookas. Great picture! So tomorrow is another busy big day. Pray she gets through the day without getting too sick!

 

Visitors today

We had a few visitors today! A family came in with a bunch of presents for all the kids here in 1 North. The son has been a patient here and is diagnosed with ALL. He was in the hospital one year around the holidays and almost got stuck here for Christmas. His mom said it was tough on him and now 2 years into remission he wanted to come back and give gifts to all the children who are here now. It was so great to meet another mom who is going through the same situation as Daniel and me. I’m sure I will see her again at clinic, when your child is diagnosed you are automatically in this club with a whole bunch of other families. It’s a club that you never want to be a part of but the people are amazing. No one knows what you are going through like another mother does. This is similar with Autism as well. Wouldn’t it be awesome to meet another mom who as a child with Leukemia and Autism! If there are any out there feel free to share your story! Jillian was a bit moody when she got her toy today but here a snap shot of her!

Our other visitor was an old friend from the Military, Eric Cheung. Daniel was in the Marines with him and stationed together in South Carolina. I knew him when we were stationed on the Harry S. Truman together. It has been so many years since we had seen him so it was nice to see a friendly face here. We didn’t realize how close we were to him; he actually works right down the street from the hospital! It was a nice visit for Daniel and we hope to get to see him more. If you follow my blog Cheung, thanks for the visit! Next time let’s visit for longer!

So I was mistaken on what day we were on our chemo treatment so that means that Jillian is not going to be getting the Dasatnib tomorrow. She will not start it till Friday. Which means that she will be getting her major chemo drug, Vincrinstine as well as a new steroid, the medicine to help with the steroid, another medicine she takes only on the weekends AND the new drug. Friday they are really doping her up on these meds. I hope she can manage to take them all without getting sick.

Good news though is that I get to go pick up my mother tomorrow! I will be making a trip down to Santa Maria to drop off and pick up some stuff. We had left so suddenly when this all started that we weren’t able to get everything that we wanted. I decided to head down to get away for a few hours and it will be nice to visit with my mother. Plus she gets to come visit us here for a few days! Jillian is super excited, especially because Grandma is bringing her one of her favorite movies, THOR! We have been watching a lot of super hero movies since we have been here. She loves super heros!

Jillian picked out a few cute hats today. There are donations of hats where the nurses are and usually there are daily donations. We are allowed to pick out what ever hats Jillian likes and today she chose these three.

Anyone out there know how to knit? If so and you want to donate to an amazing little girl, her favorite colors are pink and purple! J We are stocking up for her so if her hair does fall out then we are ready!

I don’t really have much more to report so I am going to leave you with a bunch of funny faces and pictures that Jilly and I took today when we were acting silly!

 

 

Jilly multitasking, she can eat her breakfast and take vitals at the same time!