The ugly side...

We have only posted photos of Lilly on her good days, we decided to show you the bad days.. Due to the leg pain she spends a lot of time resting, she keep a bucket with her on the days the stomach pain get to be to much. She uses her pacifiers as a comfort a lot and we don't have the heart to break her of the habit just yet.

Trip to the ER due to Stomach pain and vomiting

Lilly showing the sores that have started developing in her mount

The Pain is too much, resting in bed with mommy waiting for pain medication to kick in

Bad day with stomach pain, keeping a bucket handy cause she feels like vomiting

Running a fever and trying to keep cool resting on mommy and daddy's bed while mommy works

Strange rash that she work up with one day that was painful

Thank your for the gifts

A friend of my sister in laws gave Lilly a purple and pink hand made blanket and a hand made doll. Lilly was thrilled! 

Thank you so much Susan Hill!!!

Follow up at the Doctors again... ugh more test!

We had our follow up with Dr. Waseem today and he had also consulted with another doctor about Lilly's case. Looks like we are in for more test... ugh!! 

They took blood, as always, Lilly was brave and didn't cry..they are going to be testing her every month for the next few months looking for answers and monitoring her High Inflammation levels. After the blood work Dr. Waseem brought in a few gifts for Lilly, a book, puzzle and crayons! He is such a good doctor oh and the nurses gave Lilly juice and cookies, they all treat us so well at Children's Specialty Center of NV!

The X-ray of her stomach shows she still has a blockage, we are giving her stool softener to try and get this cleared out....

The ultrasound of her neck shows she now has 5 lumps, 3 on left side of her neck and 2 on the right side, the largest one is 1.7cm and that is the original lump found on the left side back in November of 2013 (don't know the original size, going to check my records and see if I have it), she will now be getting a biopsy.

We are going to see the Surgeon on June 4th to speak with him/her (?) about setting up to have Lilly's Biopsy done, we do not know at this time if she will have the Lymph node removed for the biopsy or if they will do a fine needed aspiration. These are things we will talk about with him/her on the day of the appointment. I will let you all know her surgery date.

Dr. Waseem also wants to have Lilly seen by a Neurologist to have her assessed for Muscle Disease or Muscle Weakness. That is set for July, more info on that as it comes.

We received our referral for Lilly's Physical Therapist, I put a call in to them today and once she has her evaluation we will start therapy.

We are to start filming Lilly on her bad days, this is because the Doctor would like to see how she is at her worst which normally happens in the evening and middle of the night. Its funny because we hear it all the time, oh Lilly looks great, she looks so healthy and fine, how could there be anything wrong with her, well we don't take her out when she is in pain... So most people don't see her crying in pain, tossing and turning all night cause her legs are hurting, laying on the sofa cause she doesn't have the energy to move and as Lilly put it "Her legs are tired". They don't hear her complain about tummy aches and sores in her mouth or the itchy rash on her thigh, They don't see a lot!

Ok so I will keep y'all updates as things progress... Thanks for following!

Lilly after her blood test, she loves the pink with purple heart bandage!

Another neck ultrasound and tummy X-rays

Lilly and I went and got her neck ultrasound down again and her tummy X-rays. She did a great job and we see Dr. Waseem tomorrow to go over the results and talk and he is bringing in another doctor, Dr. Bernstein to consult with (second opinion), this was Dr. Waseem's idea. 

Dr. Waseem has been an amazing doctor, we speak via emails whenever I have concerns, he always remembers Lilly on sight and calls her Lilly, not her given name, but the name she goes by. He has always explained in great detail what he is doing and why. He has been so great with us and with Lilly!! We do not plan on switching doctors, but it was nice of him to bring in another doctor to consult with us.

Also please note that everything I write in this blog is what I can remember of our conversations with the doctor, this is in no way medical advice for someone else.

We will have more information for y'all tomorrow!

Test results from blood work and ultrasound

Ok we went back to see Dr. Waseem on May 14th to get Lilly's latest test results.

Her blood work shows she doesn't have all the things they tested for such as catscratch fever, everything came back negative and she is still showing high inflammation levels in her blood work.

Doctor thinks the stomach pain she has been having for the past few weeks is due to Motrion upsetting her stomach and has given us a perscription for Zantac, also we are giving her stool softener to keep things moving and will have a follow up X-ray of her belly this week and see if there is still a blockage, also we will be another ultrasound of her neck to see how the lumps are, if there is any change in size. He did say it's possible she has celiac disease and it's just presenting differently, he will decide if we need to see a GI doc after her reviews her test results.

The doctor is not sure what is going on with Lilly, but he is not giving up and will continue looking, researching and testing.

We will see him on the 28th and go over her test and see if we will biopsy sooner or later... 

David and I have decided that we need to be proactive in getting Lilly better and if the possiblity of celiac disease is there... we have decided to change her diet (the whole family will do it too) to a vegan, gluten and sugar free diet.  Doing this will also remove foods that can cause inflammation in the body and add good foods that will reduce inflammation. 

We are also trying to figure out how to get a second opinion, we don't have a diagnosis, but feel it would be a good idea to have another doctor look over all her test and check her out and see if that doctor might have other ideas...

Problem is our insurance will not cover a second opinion outside of Las Vegas and the only one oncology hematology center in Las Vegas!

So we will have to look into how to get the funds together to cover the cost ourselves.

Ok I will update y'all more soon!!

Trip to the ER

Last night we rushed Lilly to the ER per doctors orders... 

Here is the back story leading up to last night.

This week has been a bad week for Lilly, she started last Saturday complaining of tummy pain and a headache, every day the tummy ache got worse and she ate less and less till she was barley eating anything at all. We contacted her Oncologist via email on Tuesday to let him know what was happening, he wrote back immediately stating that he wanted to see her on Monday or Tuesday the following week and his assistant would call us to set up the appointment. Unfortunately when his assistant called she found that the soonest she could get us in was Wednesday the 14th, we took the appointment and we were also informed that Dr. Waseem wanted to cancel our future appointment in two months, we can only assume because he got the results of her test and the fact that she is worse we will be doing the biopsy sooner then later. We were also unable to get the latest results from her ultra sound and blood work, normally her doctor would call us and tell us what he can, but this time he wants to talk in person about it.

Friday I take Lilly to her grandmas so I can go to work, (my last day is the 16th) Lilly was not feeling well and in tears that I was leaving. Grandma was able to get her calmed down enough to let me leave. 

A couple of hours later my mom texted me to FaceTime with Lilly when I was on break, I did so right away and she ended up in tears asking me to come home, grandma was not able to get her to eat much at all and she seemed to be feeling worse. I told then both that I would leave work if she needed me. Mom texted me later that yes it would be a good idea to come home. At 11:00am I told my boss that Lilly isn't well and I need to go home and be with her.

I picked up Lilly and we went home, I was able to get her to eat some cantaloupe and a few strawberry's and the we cuddled and watched Frozen.

Around 4 Lilly began complaining that he tummy was really really hurting her and could she please have some medicine to make it better, I though maybe a little food would help and made her a snack, just as I brought it out she said she feels like throwing up, so I grabbed a bowl and  sat down on the sofa with her on my lap cuddling, at 4:30 she started throwing up and then broke out in cold sweats. 

David was not home yet, but Logan was a big help and got me a wash cloth and water.

David arrived home at 5:15 and I told him  what was going on, I had not been able to move, Lilly wanted to stay on my lap so David decided to call Lilly's oncologist Dr. Waseem, the office was closed and he had gone home for the night but they transferred us to Dr. Bernstine the doctor on call, he asked us what Lilly was diagnosed with and we explained that she hasn't been diagnosed yet and gave a short version of her history. He told us we needed to take her to the ER right away and called the ER to let them know we were on our way. Thank god for family, my sister in law Christine and my sister Grace came over right always and started packing up a things we needed and Christine took Logan with her for the night. During all this David was holding Lilly and she threw up all over him. I took Lilly back and he got cleaned up and I told her we were off to the hospital, she was in tears, she did not want to go, we called grandma and grandma reassured Lilly that grandma would come down to the ER and kick any doctors butt if they did anything she didn't like, Lilly liked knowing she had back up and finally agreed to go. 

We arrived at the hospital and it was packed, I mean seriously packed, but I guess because the doctor called ahead we were rushed straight in. 

They asked lots of questions and by this time Lilly had thrown up a total or 3 times in 1 hour and a temp of 100, we were given a room and the doctor wanted to get a urine sample and X-rays of her tummy. They are easy tests so we agreed to them, they also gave Lilly some anti nausea medication. 

They doctor came to talk to us about the X-rays, he said Lilly is backed up and that was most likely causing the vomiting and tummy pain, I did not agree with this opinion at all, Lilly had been pooping fine all week... The decided it would be best if we did an enema and go home with some stool softener to get it all cleared out. We agree to do the enema, Lilly was not happy when we explained what was going to happen, but she did great. After the were done and she was allowed to go to the bathroom, all that came out was the soap/water solution and 3 little nuggets. Again I didn't agree she was back up and they had expected more but said the rest will come out tonight and over the next couple of days. Lilly was feeling a little better from the anti nausea medication and the nurse gave her a nice pop and we waited.

The doctor also said the the on call Oncologist who sent us to the ER wanted to do some blood work to see if her inflammation levels are high, David was immediately against it! He had promised Lilly no needles and both of us new they were wrong about her being backed up!  I nicely explained that we just had blood work done last week, that they just got the test  results in this week and she has already have 5 blood test (I think) done and each one shows an increase in inflammation, that the test will show it is high. The doctor agreed that maybe we shouldn't so the test because if it is high they would most likely need to precede with more testing, he said he would call the doctor back and talk to him about this. The ER doc returned and said he spoke with the oncologist and no we would not do the blood test. 

We were finally getting out of the the ER at 9:30 at night, we went threw discharge and were told that our co-pay for the ER visit would be $300, I responded are you serious??? Then told her I don't have that much money and I would have to make monthly payment to pay that off. I was then informed that that would be fine, but we were also going to be billed for the ER docs time on another bill that we will receive in the mail in a few days! Wow, we have already paid a lot in medical bills and now here is a lot more, not good!!

So we make it home get the kids in bed and have a quiet rest of the night, Lilly slept in until 8:30.

Today she has only had fluids, 6oz of Vita water and regular water.. I tried to get her to drink a smoothie and then tried pediasure and she refused both. She is very tiered and wants a nap, but can't get comfortable as her tummy hurts a little (per Lilly). It's noon now and Christine just brought over some honey kicks cereal and Lilly is eating a little bit of that, plain no milk just the way she likes it.

So that's the update for now... I will post more if anything comes up and I will let you know how the appointment goes this Wednesday.

Enjoy the lovely ER photos...

Lilly comforting herself with her pacifiers, one in the mouth one she rubs on her nose

Enjoying an ice pop