She hides her pain...

David and I have come to realize that Lilly is hiding her pain, in her mind if she tells us she is having the joint pain or just not feeling well that we are going to take her back to the doctors and that means more test and being poked and prodded.

So she has been hiding her pain, we now realize when she is in pain because she becomes so mean, yells and screams at us and then cries and cries. She acts a lot like David when he is hurting, he is like a big grumpy bear! LOL

We have explained to Lilly that we wont take her to the doctor for the pain, that we can treat the pain at home with medicine, I don't think she trust what we so.... but she is getting better at telling us when she is having pain.

The other night when I was giving Lilly a bath I saw she had a couple of scratches on her foot, its no big deal but I asked her what happened? She responded with nothing and its fine... poor kid! I explained again that I wont take her to the doctor, I just wanted to know she is ok!

Last night Lilly decided we needed to go to Chuck E Cheese for dinner and we invited our friend Shy and her son Payton (Logan's best friend). Its was so nice to chat with Shy and watch the kids play.

I have realized that some of ya'll following Lilly progress have questions... I will answer them the best I can in my next post. Until then if you have questions, comments or concerns, please email, leave a comment or Facebook me and I will include them in my next post.

 

20 more days...

As of today we have 20 more days until we see the specialist and get the results of the most recent blood work that has been done. 

This is such a long wait!!

Lillly seems to be doing pretty good, the runny nose, sniffles and sneezing all went away, so that's a good thing. The lump/ mass on her neck has not gotten any bigger, looks to be the same size.

Today grandma came to our place to watch Lilly while David and I worked and Logan went to school. Grandma said she had a great day and they planted sunflower seed, painted and played.

She was full of energy when I got home after picking up Logan from school, so when daddy got home we decided that David and the kids would go to the mall while I finally went grocery shopping. 

The mall has an indoor playground and of course tons of stuff to look at so they had a great time, David asked if I gave the. Sugar today cause they were both so full of energy and running around like crazy, lol.. Nope I didn't give them sugar! Just a good day!

Lilly Paints my nails...

Aunt Christine comes with gifts...

When my sister in law Christine found out what was going on with Lilly she put together a big box of fun toys, arts and crafts for Lilly to pick from for when she is  needing cheering up. This was all a surprise to me and Christine decided  Today is one of those days for Lilly to pick from the box. 

Is she getting sicker??

Lilly had a wonderful day out in the sunshine yesterday, it was so nice to get out of the house and get some fresh air. 

Today we are not having the best of days, she is sneezing, runny nose, cough and a little warm and of course very moody. We are hoping that she is not getting sicker, that it is just allergies... so we are going to wait another day or to and then decide if we need to go back to the Specialist.

We think she is having joint pain, she is not sleeping well and is resting a lot more. She is also telling us that she just needs to stretch her legs. David and I think she is in pain, but not telling us because she knows it means she would have to go back to the Doctor. 

We have told her that we can control the pain at home with medication and we wont go in if its only pain and to please let us know. So we shall see!

This is for our family and friends..

Dear family and friends.. 

Due to the situation we are facing, I will not be able to call each and everyone of you with news and update on how things are going. 

Lilly is our main focus and so This is why I created this blog and the Facebook account, so I am able to tell you all at the same time what is going on and keep you constantly updated. 

Please feel free to comment, email, write message and question here or on the face book account and I will respond. Some of you have my private email address and you can email me there too.

I wanted to let you all know how this all started so at the end of this blog is my very first entries and this is the first one I have made public as we didn't want to have people worrie if it was nothing.

We also ask that you keep positive thoughts in your mind, pray if you believe in god and send your healthy healing viibes our way to get Lilly better. 

Please, understand that we do not know what we are facing yet, test have been done and more test are coming. But we will keep you informed!

Seeing the Specialist...

On Tuesday Feb 18th on my way to work I got a call from the Children's Specialty Center of Nevada, (the hematologist oncologist) office asking that instead of waiting for our appointment this coming Friday, they wanted to see us right away.. 

This of course scared David and I so much! 

When we were getting ready to go Lilly who had been having a bad day started screaming and crying that she didn't want to go... We had to carry her out of the house crying to get her in the car. She isn't feeling well and she is so done with all the doctor visits and test!

One we arrived we filled out lots of paperwork and then taking back to get Lilly's vitals. She has lost 3lbs in the last 2 months...

We met our doctor and he was wonderful with Lilly. He spent a lot of time talking to us, asking tons of questions and trying to explain as best he could what "could" be going on and what steps we will be taking.

He said that she doesn't show signs of having cancer (leukemia) but that it is not off the table as it can hide and could be hiding in the mass on her neck, but he feels that it's not going to be it, such a relief to hear that the risk of that being why she is sick is so low made David and I breath a little easier!! 

But he did state that she is sick, something's are off in her blood work and we need to do more testing and then a biopsy of the lump on her neck. He mentioned things like "autoimmune" and "arthritis" as possible causes for her condition. 

They took MORE blood!! Lilly did amazing, didn't even cry! 

The doctor gave Lilly a new princess barbie and 3 lolly pops and the staff gave her a princess coloring book and crayons. The place is made for taking care of children and it was really nice!

So as of right now doctors orders are..we are watching Lilly closely, if the lump/ mass on her neck gets bigger, she runs a fever, more pain in her joints or new joint pain in a different location or just seems sicker we will go back in right away. She is to keep away from sick people and we have to reduce her exposure to any illness, so no day care and play dates only after the child has had a full check up with their doctor, just kidding on that. But we do have to keep her from getting exposed since she is not able to fight off infections right now.

The blood test they are doing takes up to 2 weeks so we have an appointment in 1 month to go over the  results and plan our next steps such as doing the biopsy. The biopsy will give a lot of answers.

If you are wondering like David and I have been, why are they not doing the biopsy right away... Well I have a wonderful friend Tonya who has great knowledge regarding medical stuff as she has training and has a daughter who was very ill for a long time. So Tonya explained it to my husband and I in these terms.

Here is a copy of her message response to my questioning why not biopsy now! Why all the test?

"The Biopsy is just a rule out thing. They do it so they can absolutely say "This is NOT Cancer". They're not jumping to it because they don't feel this is cancer and they don't want to put her through ANY unnecessary stuff. Believe me, if they did, you guys would be scheduled & having it done by the end of the week !!! But before they go with an Auto immune diagnosis, they have to do EXACTLY what they did to Hayden & do a biopsy to Rule Cancer out. Once they have that confirmation, then they can treat the auto immune. They're hoping that the auto immune will calm down. Hayden's flares up & goes away. So they're hoping that this is a "flare up" on lilly's part & in a couple weeks, she'll calm down. They're waiting also because they'll do labs at that time & see if her markers have changed at all to point to once specific auto immune. Like if she's better, & Her rheumatoid arthritis markers are down, then they know it's that type of auto immune. Medical looks at things to Rule out MORE than they look at things to Diagnose. So many diseases have multiple symptoms that are the same. You don't want to just jump in & start poking around. So you rule out the easier ones first by bloodwork & Time, then go to the next step, then the next step. It's why the medical world fascinates me & why I love working in it. Albeit it's with animals, but it's even MORE so the rule out process with them because they can't tell you what's wrong."

Thank you Tonya!!! 

Tonya has been a major help through all of this, great advice and full of information and her amazing ability to translate doctor speak to something we can understand!

Thank you to my mom for taking care of Lilly while we are at work, keeping her safe and germ free

Appointment to see the Hemotologist Oncologist

I spoke with the specialist office and we have an appointment to see the doctor on Friday... It will be a long week waiting for the results and hopefully get some answers! 

Cat Scan

Just so y'all are aware, yes we were asked to do a cat scan if her neck, after much thought my husband and I decided that we would not have the test done, we want to see the hematologist oncologist first before we do any more test, he might want to go in a different direction an she doesn't need to be exposed to more test or radiation if it's not needed. So it's a wait and see!

More leg pain and less waking

On Saturday Feb 15th I took the kids on some errands and shopping at the store, Lilly would normally be running up and down the isle chasing her brother around and the two of them making me crazy. 

But Lilly was having a hard day, he was walking really slow as we made our way though the parking lot to get a cart and he asked to sit in it right away, normally you have to hog tie her to get her in the seat and he preferred method is running screaming though the store. 

So I put her in the cart and every once and a while I would ask if she wanted to walk, she would tell me no, he leg hurt and she is tired. 

By the time we got home around 2 she was in too much pain, her knee join is where the pain is at so I quickly got the Motrin and hot pack and soon she was comfortable again. 

I have to say, Lilly is a little roller coaster right now, she will wake up and feel great and play and run and then 1 to 2 hours later she is worn out, tummy and leg pain. 

After resting for a few hours she is back up playing and running, then she is down again. 

So I end up on the same roller coaster with worry, she's up and play the I just think oh she is fine the doctors will come back with the results and it will be nothing, then she is curled up in my lap asking me to sign to her cause she is hurting and tired and I think, she is sick and it's bad and what it my baby has cancer! 

I hate roller coasters! 

Blood test #2

Friday Feb 14th we took Lilly in to do her second blood test, this one was harder then the first! 

The woman who was going to take Lilly's blood ha been doing this for 28 years so we were confidant in her abilities, but she wanted to lay Lilly down in the bed to take the blood, my husband and I both explained that she would fight that and she would do so well if he could sit in daddies lap when they took the blood. 

She finally agreed and boy did it hurt Lilly, but she hung in there and didn't move and man the sucky part is They needed so much blood that they could not use those little needed and so she was stuck with those big adult size ones for drawing blood, the took 6 vials of blood, I guess they have a lot of things the need to check out!? 

The woman who took Lilly's blood was so impressed by Lilly, she said in her 28 years she has never had a child Lilly's age sit in the chair I have the blood drawn or seen her deal with it so well!! Lab work take 2 to 3 days to arrive at the doctors office, Lilly's blood work is going to be sent to her pediatrician and to the hematologist oncologist. 

We should have news by Tuesday or Wednesday.

Of course Lilly got another gift for doing so well, she wanted a vanity! Now she spends her time doing her hair and makeup and it is so cute!

Last chance antibiotics

Wednesday Feb 12th we started Lilly on her new stronger antibiotics, lucky for us David had the day off so he could keep a close eye on her and make sure he had no reactions. She did well, she had ate and played with daddy! 

Trip to LA

We had a great trip to LA, but Lilly started having joint pain in her knee, one night she woke up screaming and crying because the pain was so bad. We have her Motrin and did a hot pack until it eased enough for her to fall back asleep. 

She had a great time going to the private school I am working for and so did my son! We also went to the LA Zoo and had a blast!!

We got to have a nice visit with my brother Morgan and his wife Kyla, the were nice enough to let us stay with them. We didn't get to see any other family or friends, but I was able to have lunch with a friend I haven't seen in so long and it felt like no time had passed at all, the conversation just flowed!

So far we have only told close family and a very few friends about what's going on with Lilly. We want to keep it private for now.

Where is our antibiotics!

The next day we tried to get the antibiotics for Lilly, they didn't have any for kids so we had to wait another day, this sucks for us because we have to leave on Friday to go to Los Angeles for my 2nd job and will be there for 4 days and we don't want to start the antibiotics while in LA just in case she has a bad reaction.

Side note: David works full time and I work 28 hours a week at an office doing A/P and then another 20 hours a week at home doing Book keeping for a school in LA so I remote log on to my second job and that allows me to be with the kids, not pay for after school care for Logan.

The results part 2

I was able to get an appointment for us I see her pediatrician David Budge for the 6th of Feb. When he walked in my son Logan said to him, yeah we are seeing you a lot huh!? He doctor smiles and said yeah I'm sorry for that, he then turned to me and say the most amazing thing, he apologized for not being the one to give us the results and how he wanted to be hear for us. I explained to him that, that is why we were here, the asshole doctor didn't tell us anything and she is still sick. I had brought in the lab work and ultra sound results and he sat down and went over each thing that was off one by one. 

He was concerned with he results because... 

1. He blood sugar was a little high but not bad, could be because we didn't fast before the test, so not to worry its nothing serious.

2. She is anemic, this is strange.. But not uncommon, but when you put that with the "bands" result it made him more concerned. 

3. The biggest concern is her "bands" I will put a link in explaining in more detail about what bands are, but here is the short version. Her bands are high and that's not good, bands are "baby cells that develops in the bone or spine I think he said, they are not mature yet, the grown and then they are ready to fight infection, but these baby bands are in her blood and trying to fight something" she doesn't have a virus and the antibiotics didn't make her better or the bands would go to normal. He whispered to me "cancer" so Lilly wouldn't hear, it's a sign plus with the anemia. He told he he wanted to try just one more course of antibiotics in the hopes it's a staph infection that is antibiotic resistant. It's a strong one and we have to watch her closely for a reaction.

He then told me that he is putting in a referral for us to see a Hematologist-oncologist (meaning a blood cancer doctor) and he wants us to so a cat scan of her neck. The ultrasound showed it was large and shapped in an oblong (not normal) but it doesn't tell then what is inside and a cat scan can give us more details about the lump on her neck.

I love David Budge for taking all the time in the world for us and to me that if we need anything to speak directly to him and only see him. He is a good man and Lilly really likes seeing him.

Side note... When he check her throat he said it still looked infected and would assume a strep throat if he saw this in another child, but with her history he knows there is something going on. He requested that after she has been on the new antibiotics for a few days we are to do the blood test to see if the antibiotics are working.