NOT CANCER!!!!

After days of waiting to find out, we got word from the Surgeon's office this afternoon the Lilly does NOT have cancer!!!!

There are still lots of test being run and we should have more information when we see the surgeon on June 30th!

David and I are so happy right now to know that cancer is off the table!

No test results yet...

We were told that we might have the first of the test results in today, I called the surgeons office, but no such luck! The nurse said she will call me when the results start to come in, but can not give a time line of when. 

Anyways, I was checking out Lilly's neck from the surgery, we have to keep it clean and check for infections and what not and it's looking good, you can see she has some bruising. But it is healing well. The stitches will come off in 10 to 14 days. They are called Steristrips, so she won't have a lot of scaring.

Day after surgery

This morning when Lilly woke up at 7:00 am she was in pain, the first words out of her mouth was mommy my neck hurts so much I can not move, I rushed to the kitchen and got her some ibuprofen and got her as comfortable as possible until the medication kicked in. 

After 40 minutes she was starting to feel a little better, less pain in the neck but her tummy was hurting. I asked her if food might help and she was willing to give it a try. She had breakfast and was perking up even though she said she was still having tummy pain. 

We relaxed for some of the morning and then it was time to play with play doh, this really cheered her up, then she wanted to play in the bath, I told her it was fine she just couldn't play swimming cause we needed to keep her neck dry. She agreed and played in the bath making a tea and cupcake party with bath toys. 

Around lunch time her Aunt Christine came over with her cousin Kassy (Kassy is just about 3 months older then Lilly and Lilly's 2nd best friend as mommy is her 1st best friend). Christine brought over a bunch of arts and crafts stuff so the girls got busy creating art! Lilly made daddy a Father's Day picture. The girls then found other things to play and soon Christine brought out a cardboard doll house, after a lot of work putting it together Lilly got to play with it, cool thing is, it's one that you decorate and color yourself, so Lilly will have fun working on that tomorrow, because soon Lilly was getting grumpy and worn out and needed a rest. 

Christine and Kassy headed home and I gave Lilly a snack and more pain meds since she was hurting and we rested on the sofa watching a movie. Currently she is still resting, she is really worn out but in a much better mood. 

She wanted me to take some photos, so she threw on some of her jewelry and struck a pose! 

Enjoy the photos, thanks for following!!

Playhouse that Christine Built for Lilly to decorate and play with

Silly girl with play doh on her nose..

Fathers Day Gift for Daddy made by Lilly!

Lilly striking a pose with her special jeweler, notice she is still covered in paint from Arts and Crafts time, LOL

Lilly resting with Mommy watching a movie..

There is the Beautiful and happy girl!!

Surgery / Neck Biopsy

Ok, so the surgery is all done and over with. I am so happy we are done with that, it was stressful! But we knew we were doing the right thing and we will have answers (I hope)! 

Lilly had no problem going to the hospital.. She was all prepared after our talk and the tour of the hospital. 

We met with Lilly's surgeon Dr. Fiore and he went over all the risks and what he was going to do, he marked Lilly's neck where he wanted to do the biopsy,

Left side was the original lump and he also marked the right side because he felt that side might be an easier access.

He said he would decided once in the OR what side he would cut into and biopsy.

Lilly was taken into surgery with no problems at all, she didn't even cry! She waved to everyone on her ride to the OR.

The surgery didn't take as long as expected, only 1/2 hour. A nurse told us she was all done and then Dr. Fiore came out to talk to us, he said the surgery went great, he chose the right side and when he went in found the lymph nodes were larger and deeper then the ultrasound had shown, he didn't get all of the lump out of the node, but did get a lot.. About the side of a dime (wow big)! 

He said that we should have the results for cancer on Monday or Tuesday and if we don't hear from his office to call on Tuesday. The rest of the results will be a week and some weeks and a month. Glad they are testing everything! 

We were taken back to see Lilly and she hadn't woke up yet, so I walked up to the  bed with David and we gently woke her up, the nurse said I can hold her right away, I was thrilled and Lilly was happy! She woke up with no problems at all, drank some water and then had and ice pop and rested with mommy. Daddy informed everyone all went well! She has a sore throat from the tube down her throat to keep her airway open, but otherwise she is feeling good, just worn out.

After about an hour they said she can go home. They gave us discharge paperwork and a prescription for Tylenol with Loratab for pain. 

We are all home now and Lilly is resting, she checked out her surprise new toys that Logan and daddy picked up for her (money for toys was from a donor, who specifically asked it be spent on toys for recovery). She loved the new toys, but is to worn out to play, so cuddling and resting is the plan for the day.

Thank you all for following along, welcome to all our new followers! Thanks to everyone for your encouraging words, prayers, positive thoughts and postulates for Lilly!! 

I will update you again tomorrow and let you know how Lilly is doing on her recovery!

Driving to the Hospital

All Dress and Ready

Little Cuddle time with Daddy

Kisses from Daddy

In the Playroom, it was fun to play while we wait for her to go into surgery

Playing with building blocks

Doctor marked her neck on where he would operate, left or right side was to be decided in the OR

Time to head in to Surgery

Lilly waking up from surgery, they taped her eyes closed during surgery so she had a lot of red marks on her face because her skin is so sensitive.

My beautiful girl did so great!!

Here is the the right side of her neck where they operated and did the biopsy

Lilly having an ice pop

Pre-Op check up and Tour of Hospital

This morning Lilly had her pre-op check up to make sure she is healthy enough for surgery. Which she is, so we are a go for tomorrow.

Thanks Christine for coming with me and taking photos! Thanks Mom for taking care of Logan!

The hospital - Sunrise Children's Hospital also offers children a tour of the hospital and an explanation of what will happen the day of surgery, from the moment she arrives to her waking up in the recovery room and then going home.

It's was a good tour and really helpful!

One of the Nurses gave Lilly a Care Bear! So nice!

Lilly and I meeting some of the Nurses

Meeting more Staff at the Hospital

Lilly checking out the mask that will provide the sleepy air

She thinks its pretty neat!

Lilly with her gifts from the Hospital

This lovely lady works with Children to get the comfortable and understanding of what will go on, She gave Lilly a Doll that she got to put a face on and then Lilly got to be the Doctor. They went over what Lilly would have done and how she would feel and what she would see.

Checking the Dolls Blood Pressure (Giving the dolls arm a hug)

It was time for the Doll to have the sleepy time mask put on so it could take a nap

Next after Dolly is asleep Lilly can help fix the doll

Oh this made Lilly so happy and comfortable!

Taking Dolly home with us and some Bubbles

Blowing Bubbles as we leave the Hospital

Before surgery photos of Lilly's neck

Its not noticeable in this photo

Updates..

I wanted to give y'all some updates! 

My husband and I sat down and talked to our son Logan who is 7, about the upcoming surgery and what is going on with Lilly. He has know she is sick, but telling him about the surgery was a big deal to him, he asked why they are doing this and we explained it is to hopeful find out an answer to why she is sick. He took everything pretty well and had lots of questions. He told us he wanted to help so we asked him if he could help daddy pick out some toys for Lilly to play with while she recoved from surgery it would be a big help, he smiled and said he new exactly what she needed and what would make her happy. 

The day of the surgery Logan will spend it with his best friend Payton, my friend Shy (Payton's mom) was more then happy to spend the day with Logan and keep his mind off of what was happening. Thank you Shy!!! You and your family have been so good to us.

My mom is planning on going with us to the hospital. It's nice to have the support of family!

I have pre-registered Lilly for her surgery and paid the hospital the cost of using the outpatient surgery room (this doesn't include the doctors fees, anesthesiologist fees, lab fees and other hospital fees). She has a pre-op appointment Thursday morning and she will also get a tour of the hospital. The hospital provides a program to explain and show kids what is going to be happening the day of surgery to take some of the fear away. 

We have had some very nice donations and thank you to everyone who has donated so far! You have helped us cover the fee for the hospital and some of the lab work, now we just need help covering the rest of the costs!!

  

2nd Physical Therapy appointment

Lilly is doing great with her physical therapy. She has fun doing it and it should start reducing her pain soon.

Lilly's Ultrasound report

Below is the Ultrasound Results from Lilly's Ultrasound done on 4/23/14, I have only blocked out on the record MRN, Account Accession and order numbers. All other information is there for you all to see. 

1st Physical Therapy Appointment

Lilly saw the Physical Therapist today, it went great and they feel that they will be able to reduce the pain she is having in her legs. 

She will be seen 2 times a week to do heat treatment, stretching and strengthen her leg muscles. 

The other days we will do stretching at home and water therapy in a heated pool. She enjoyed her first appointment and the Therapist is awesome! 

Even better news, for now her therapy is a medical necessity so the insurance will cover all cost!! Great news for us!! 

We do have to to pay for the membership at the pool, but I don't think that will cost too much! 

The photo is of Lilly receiving her heat treatment on her legs before stretching.

Our visit with the Pediatric Surgeon

We saw the pediatric surgeon today, what a great doctor he is!! 

We went over Lilly's history, he examined Lilly and then we talked.

He said that yes he feels it is time to do a biopsy, if it was still only one lump he wouldn't, but since she has 5 lumps it's time to see what is going on in there.

He said he will do a Excisinal Biopsy, this way they will get the whole thing out or at minimum a pea size piece of it and that will be enough to run all the test needed. He will not remove the lymph node, just open it up. She will have a scar on her neck, since they do have to cut her open to access the area, but it should be small. 

"Excisional or incisional biopsy

In this type of biopsy, a surgeon cuts through the skin to remove the entire tumor (called an excisional biopsy) or a small part of a large tumor (called an incisional biopsy). This is often done using general anesthesia (to put the patient into a deep sleep so they will feel no pain)."

They will test for cancer and a bunch of standard test like fungus etc and they will also test for the off the wall things to cover all areas. 

If it is cancer we should know pretty quickly, but all the other test take time so we will get results as they come in and some won't be in for a month.

He told us not to hold our breath for this to give us the answers, at times they find nothing, no answers at all and that means we will be back to square one on trying to figure out what's going on. 

But if the answer is there, we will have it and be able to start getting her better!

We are thinking positive thoughts that we will get an answer! We ask you all to do the same, please!

Lilly's surgery is set for June 13th, we won't know what time until the day before and we will post on Facebook the time and keep you updated.

The surgery will take about 1 hour as an out patient and the recovery about a week at home. We are already recording movies for her to watch and plan on getting her a few things, toys (like the frozen dolls), puzzles, Duplo Legos and coloring books to keep her busy while she recovers.

We have also been informed that we will need to pay for the surgery the day before she goes in, so if you can or know someone who can donate please do, you can donate at the top right of this blog via pay pal or go fund me. We will know the total amount due soon, they need to check with our insurance first to see how much the insurance company will cover and the balance will be on us.

Thank you all for following Lilly's blog, for the donations we have received and all the help, kind words and support!

                  

It was a long day for Lilly, she was worn out from the visit and fell asleep

Asking for Help - Donations

My husband and I are doing something we never thought we would ever have to do... We are swallowing our pride to ask for help.. Financially...

If you have been following along on this blog you will know that both David and I work, I was able to move to working from home recently to be able to take care of our daughter thanks to Colonial Property Management here in Las Vegas and Kids World School, Inc in Los Angeles. 

We have provided for our family, we live pay check to pay check, but we have always been able to provide for our family... and now we have hit financial difficulty, a trip to the ER for Lilly cost us over $400, the test after test fees have piled up, all the doctor visit co-pays has thrown us off our budget and now we will be looking at Surgery for Lilly to biopsy the enlarged lymph nodes in her neck, this will cost us over $700. We will also be starting Physical Therapy on June 5th and she is required to do this daily to strengthen her legs and each visit has a co-payment. In July she will see a neurologist and again the visit with a specialist and testing is going to cost us. On top of that we still need to see the oncologist monthly for blood testing to watch her inflammation levels in her blood, testing for other conditions to rule out what it is or isn't and continued physical exams.

So we are asking you, to please donate if you can... share this blog, our facebook account and posts with anyone and everyone and see if they are able to donate.

There are two ways to donate... on the top right corner of this blog there is a donation button it will take you to donate through Paypal or through go fund me listed just below the Pay Pal Donate button. 

We really appreciate everyone's help, and we will keep you all posted as things progress!

Another way to keep up to date is follow us on face book, just click here and like us -> Oh Geez Really!?!?! Face Book