Slow days are good days

So Jillian has finally accepted and fully understands the possibility of her losing her hair. I show her pictures of other children who have lost her hair due to cancer and we talk about how beautiful they are and that there is a very high chance that she will lose hers as well. The only thing that concerns her is that it will grow back. I tell her everyday that her hair will indeed grow back but it’s still heartbreaking to hear her say that she will miss her hair. Although this is a very superficial thing to worry about when your child has cancer, it is the one thing that really labels them as being sick. I know it’s going to be hard on her because other than feeling sick it’s the one thing that she will physically see that is changing her body. I am still holding hope that she will be one of the rare children who do not lose her hair! We are noticing it thinning a lot more but haven’t seen any falling out. Let’s hope!

We spent most of yesterday sleeping! It’s like she’s an infant again. We sleep when she sleeps. And she has been really tired lately. The meds are really doing a toll on her body but we are happy to not be seeing any major sickness. She went in for a full body bone density scan. They wanted to see if she was showing any signs of Osteoporosis. Her scans came back with no abnormal signs so that’s a good thing! She sat really well during the test, we were so proud of her. She was so exhausted but we managed to get through it. Here she is waiting for the test to start. She was a bit scared but was fine because they let me hold her hand the whole time. Her legs look super long here!

 

The rest of the day was spent resting and sleeping. We didn’t make it up to the play room, some days she just doesn’t feel up for it. She’s still eating ok. Her new favorite food right now is toast. She eats it for every meal now! Oh, we did get some results back from the spinal tap test and just like her first one it came back with no signs of Leukemia cells in her spinal fluid or brain. Hooray for good news! We still haven’t gotten any results back from the Ph+ recheck. I’m hoping we will get them before we start the Dasatnib (the experimental drug) which we are supposed to start tomorrow! I’m sure the test will come back the same as the first time but we can always hope there was a false positive! She’s been off her IV for fluids for a few days now. As long as we can keep her drinking throughout the day then she doesn’t have to be hooked up. I gave Daniel the job of documenting her fluid intake and making sure she drinks and man did he take it seriously! He makes her drink all day long and documents ever sip she’s taking. It’s awesome! One less thing I need to stress about too! We are hoping for another non eventful day today since tomorrow should be a big one. During rounds the doctors come in and just ask if we have any questions because there’s not much to report. No news is good news sometimes! Tomorrow we will also get to see where her numbers are at so we will see how much closer we are to going home! Send all the prayers you can send in hopes her numbers went up! I hope everyone has a happy Wednesday!

Cookie Bouquet!

Look what we got delivered today! Thank you to Aunt Amy, Uncle Mar, Brennan and Rylan for the coolest bouquet! She loves it! :-)

Autism and Leukemia

Another slow day here in Stanford. We come to look forward to the days where our biggest concern is entertaining Jillian rather than any other type of procedure. Thank heavens for slow days! Since we didn’t have a very productive day and there’s not a lot to report on Jillian’s treatment I thought I would take this time to talk about Leukemia and Autism. I have always been the type of person that believes that things happen for a reason. I tell myself on a daily basis that God only give you what you can handle. If that’s the case then God thinks I can handle a hurricane inside a tornado! When my son, William was 3 he was diagnosed with Autism. When we got the diagnosis it felt like the world had ended for him. I went through a bought of self pity and “why me”. It takes a while to get out of that frame of mind when your child is developmentally delayed. You have this vision of him being “that” child at school and wondering if he will ever live a normal life. I am constantly preparing myself for the possibility that William will be with us for the rest of his life. Even though it would be amazing to always have him, our dream is for him to be independent, get married one day, have kids and be happy. William is 6 now and is still non verbal. If you knew William you would know that he sees nothing wrong or different about himself. He is this happy, loving amazing child. He loves everyone he knows and gives hugs to show it. He’s disciplined and well behaved because we feel that having Autism is not an excuse for bad behavior. He loves school and loves to learn. Just by looking at him you would never know that he was developmentally delayed. People often tell me that William “does not look Autistic” it makes me laugh because no one knows what an Autistic child looks like. You couldn’t point him out of a line up (but given a few minutes to watch their behaviors, us Autistic mothers could pick the Autistic child out from a football field away!) I believe that Autism has prepared me for Leukemia. It has taught me how to be “that” mother. The one who asks the million questions and wants copies of EVERYTHING. The one that the nurses don’t worry about because they know their patient will be getting their meds at the right time. The one that can hold back the tears (most of the time) to make sure they are getting all the information the doctors are telling them. Autism has allowed me to know what it is like to have the child that may not be “perfect” in society’s eyes. I feel that everything that I have done with my life and everything that I have learned has been in preparation to be the mother who helps save their child’s life. I have sat through IEPs, school meeting, regional center meetings, speech therapies and behavioral services. I know how to treat Autism and what is best for my son. Now it is time for me to sit through doctor visits, chemotherapy, treatment plans, long hospital stays and time away from home. I will soon be as knowledgeable in Leukemia as I am in Autism. God chose my husband I to be blessed with these children who need a little more care. People often say that I am this strong woman and they don’t know how I handle this stuff. Truth is, is that I have no freaking choice. Would I have chosen this life for myself? Heck no! I would not have wanted my children to have Autism and Leukemia, but I wouldn’t change them for anything. I may look strong but if you could see what’s going on in the inside you would know I’m a mess and I’m barely hanging on here! But this is my life and it is fine. Not only do we get to support Autism with Autism walks and such but we will also get to support Leukemia! Jillian will survive this and in the end when William is older and doesn’t stop talking, we will look back on this time as the days that Jillian HAD Leukemia.

 

Still low ANC

Wow! All the support we are getting is just so overwhelming! I cannot stress how lucky we are to know amazing people! Thank you thank you thank you to all the donors and all the prayers we are getting. We are so blessed!

We woke up again to a lower ANC count. Her count as of today is at 30. Scary to think you child has such a low immune system. It’s good that we are here to monitor any type of illness she may get. It’s hard to be here and we are on day 13 of overnight hospital stays, but we are lucky that we are able to be here and monitor her. The doctors have decided to only check Jillians counts on Mondays and Thursdays now, since her ANC count is so low they do not want to risk accessing her PICC line on a daily basis and risking infection. So they will check on Thursday to see where she is at. So we have a few days to pray her numbers go up! Her platelet count is rising so we are happy with that. If it goes below 10,000 then she will need a blood transfusion and this morning I believe she was at 117,000.  We have another mellow day today; we just have to find interesting ways to entertain Jillian. Any ideas anyone has to entertain a four year old that cannot leave the hospital is greatly appreciated! We will take any advice J Happy Monday everyone!

Texas Fundraiser!

To all my Texas friends and family! Our family is hosting a fundraiser for Jillian; here is the flyer and all the information. If you can participate, please do so! Thanks everyone and thanks to all the hard work everyone is putting into fundraisers to support Jillian!

Happy Sunday Night

We had a pretty uneventful night tonight. Fought with Jillian to take a bath and went on a long walk exploring the hospital again. I tried to convince Jill to let me cut her hair but she insists it hurts! Her hair is still looking intact and I'm finding more of my hair falling out than hers! Maybe the chemo is rubbing off to me. Looked through my phone to get an idea of what our night was like and this was the only picture I took. Thought it was fun though and wanted to share it. She's such a beauty!

Christmas in the hospital

Well it looks like we’re here for Christmas. Christmas in the hospital shouldn’t be too bad, right? During rounds the doctors told us that it is very common for children’s ANC’s to get really low in the induction phase of chemo. So knowing that Jillian is pretty much on the same track as most children at this stage is reassuring. We were trying to stay optimistic in hopes that she would excel in her treatment and get home sooner rather than later. But that no longer looks hopeful. She will most likely stay in the hospital for the full induction phase which last 28 days. We could get lucky and leave early but that all depends on her numbers. We have to continue to stay in the hospital because if her number are this low and we go home she could catch any type of infection and we will not be close enough to the hospital  to treat her. I asked the doctors about the drug that could up her white blood cells but she stated she didn’t think it would be best for Jillian. This is because the drug will overload her white blood cells which would be great, but it can also overload her Leukemia cells if they are still present in her bone marrow. So when hearing that, there was no way we would go with that drug. Which means….. more hospital time!! We have already decided if we had to stay in the hospital that we would just celebrate Christmas the day we get home. Who cares if Christmas falls in January for us this year. It will still be just as special! My parents have decided to get rid of the real tree we bought (a day before we went to the hospital by the way, if we had waited one more day we could have saved ourselves 80 bucks!) and they are going to put up a fake tree so no matter when we go home our tree will still be up so we can celebrate Christmas on any day! I seriously love my parents! I don’t know how we would have gotten through any of this without them there for us!

I found this amazing group on Face book today. It’s hard to find families such as ourselves because Jillians diagnosis is so rare. This grouped consists of 100 members and they are all affected with Ph+ALL. There are children and adults and they all have experience! It’s AMAZING to finally have some point of contact with people who are going through similar situations. It will be so nice to have support when this battle gets really tough! Thank heavens for that group!

Since we know now that we will be here for Christmas we have had several people ask for Jillians address so they could send cards and stuff. I wanted to wait because I didn’t want anyone to send her anything and us not be here when it got here. But now we are confident that we will so if anyone would like to send her a Christmas card or anything to help boost her mood (because she is having a rough time this weekend, we hope it passes) feel free to do so. The address here is:

Lucile Packard Children’s Hospital
Jillian Garcia
1 North, Room 1455
725 Welch Road
 Palo Alto,CA 94304

My husband and I just want to wish everyone a very Merry Christmas. We wish we would be around to celebrate it with you, please keep Jillian in your prayers!