Here is Gianna! - Yes, she's as adorable as she looks. 

                                    
The story below is a timeline of events written by Gianna's mother - Lisamarie Guevara

While getting Gianna out of the bath to dry her off, she complained her leg hurt. I asked her what happened. "I fall down at the park, but I ok". 
The same thing the next couple evenings after taking a bath, she complained of leg pain. 

I gave it kisses and told her she will be ok. 

That Saturday morning she woke up limping but otherwise acting normal while distracted and busy like any toddler, never did we think anything was wrong. That Sunday night, everything changed. Gianna woke up at 12:30 a.m. crying and screaming. She was telling us that her leg hurt. After about an hour, I was able to get her back to sleep.

That Monday morning she woke up, limped for a few minutes and went to daycare. I advised daycare to keep watch and inform me if she complains of pain, etc. When I picked her up Monday night, daycare said " Gianna was not really herself today. She limped, didn't want to play much with others, and had complaints that her leg hurt during nap".

Noted. 

I went to work Tuesday morning. I talked with a nurse practitioner. She agreed to order an X-ray to rule out a fracture as I was unable to get into Gianna's primary care physician same day. X-ray was done and I was given the results. Gianna had an expansile lesion of the right fibula. Clinical correlation recommended.

Panic set it. Lesion... a lesion... sigh... the many possibilities this could be. 

I went and got Gianna from home with my parents and took her to convenient care. There she was splinted as this unknown bone lesion had a high risk of fracture. 

I sat at home that day waiting for a call for a referral as the awesome staff and doctor I work for was on it. Then a friend, Amy, reached out. Amy advised me where her daughter seeks care, that I need to be her advocate and provided me with the phone number. I thought to myself, "I got this". This is what I do for patients everyday. I called Ann and Robert H Lurie Children's Hospital. I begged with fear and was able to get an appointment next day, March 2nd.

Gianna saw Dr. Sagan, an orthopedic surgeon. She put Gianna in a boot, ordered an MRI and blood tests. 

Gianna was scheduled next day, March 3rd for an MRI of her right tibia/fibula.

Though that was excellent care, Gianna's pain took a turn for the worse that night and had to be taken to the ER at Lurie for pain control. 

We finally made it to her MRI at 8 a.m. on March 3rd. Watching them sedate my child and seeing her slowly go under anesthesia was absolutely heart breaking.

Gianna made it through her MRI and before I was called back to recovery, Dr. Sagan was calling my phone. This lesion on Gianna's leg is real, the problem is in the bone. There is no soft tissue involvement. Again, It has multiple possibilities and in order to get a clear diagnosis, she needed a bone biopsy. 

The bone biopsy was set for March 7th. Gianna was sedated and taken back to Interventional Radiology. The interventional radiologist went in to do the procedure and saw a 'Neoplastic Process' outside the bone and only took a sample of that. Now the wait is on. Next, March 9th, we were referred and scheduled with an orthopedic oncologist, Dr. Peabody.

The results were still pending. After talking about medical history, etc. Dr. Peabody stated that more than likely, Gianna will need a repeat biopsy, and of the bone this time. 8 days went by before we were called with the pathology. 

During that waiting period, I took Gianna to her primary doctor to discuss pain control and how we were waiting and feeling concerned with the lack of communication by the doctors at Lurie. 

Gianna's doctor planned on getting a second opinion and sending her to either OSF or St. Louis Children's. We went with St. Louis.  After the visit with her primary, I received the call from Dr. Peabody. The Orthopedic Oncologist at Lurie. The results came back. The tissue showed an osteoblastoma. This is a benign mass. Dr. Peabody stated "This is not what Gianna has. Her involvement is in the bone. We need a bone sample. This pathology showed a reactive process. I am going to order a bone biopsy and they will call to schedule you soon." 

Days went by and no phone call. I personally tried calling and was getting put off. Finally, Dr. Sagans office (orthopedic surgeon)  was calling to follow up. The nurse stated how she saw the order for a bone biopsy, however, it was not scheduled. She expressed her frustration and provided me with the direct number of the scheduler. 

I was able to get Gianna's second biopsy scheduled for March 21st. We had the same staff as before, which helped Gianna feel comfortable. The interventional radiologist apologized multiple times for the non-diagnostic biopsy. Apologizing that Gianna is having to get sedated and go through this procedure for the second time. Though this time, they ensured they would drill into the bone and get the sample needed.

On Thursday, March 23rd, was our appointment in St. Louis. Our second opinion. Victor and I were excited after being told numerous times that we will be in good hands. Let's just say we were disappointed. However, the doctor we saw made a referral to the oncology department. That office was persistent with their phone calls and trying to get Gianna scheduled.

Thursday morning, March 23rd, we also got the phone call from Lurie Children's with the result of the biopsy.

Gianna was officially diagnosed with Langerhan's Cell Histiocytosis. 

Dr. Peabody, the orthopedic oncologist at Lurie stated he was making a referral to a physician who specializes in this. 

Now, I have St. Louis Children's trying to schedule with their oncology department and also being referred at Lurie Children's. 

With the first impression at St Louis, we were not going back. However, when I called Lurie daily to get Gianna scheduled, they would not book her an appointment!

For two and half days I let me phone ring and go to voicemail when St. Louis called me. Then finally, something clicked. They wanted her as their patient. Her diagnosis is something they want to help with and treat. Lurie Children's was putting me off and unsure when they would be able to 'work her in'. 

So I was open and decided to give St. Louis Children's a second chance. I am ever so thankful I did!  On Friday, March 31st, Gianna, Victor, and I met the physician who wants to help our little girl. Who wants to make her better. The doctor who spent two and half hours of his time to answer questions and provide excellent care and information. The doctor who Gianna was sharing Doritos with because he told her they are his favorite.

Dr. Alok Kothari at St. Louis Children's is who Gianna will get her care from. This ugly 'disease' that has caused my baby pain, will be gone. 

Gianna will have a port placement done on April 7th, 2017 and her first Chemotherapy treatment. This treatment course will take at least a year. This means many trips to and from St. Louis.



That is the summary of what has happened thus far on this journey, although, many not so fun details have been left out. I share this information to not only point out what is going on with Gianna and her health, but also the harsh realty of what this fight brings with it.

Currently the family is going through a tremendous amount of emotional pain. With the burden of the unknown future, variable timeframes, and most of all, the worry of how Gianna will be feeling throughout the whole treatment process. 

But the reason for this gofundme page is because of the financial realities that come along with this journey. The Guevara family does not feel comfortable asking for help, therefore, we will ask for them. Afterall, asking never hurts!

As with many medical conditions, Health Insurance can be a complicated, time consuming, and certainly a frustrating thing to deal with. But, even if that goes smooth there are so many other expenses associated with this process. Such as:
Copayment, hotels, fuel, food, time off work, and many other items. That being said, every little bit that can help the Guevara family with this battle goes a long way towards the healthy recovery of Gianna!

If you can't afford to donate, I ask that you at least give your best wishes/prayers to Gianna. She deserves them. 

We thank you in advance.
So does she-this is the internet, she will be able to look back 50+ years from now and see all the kind people who helped her through this. 


Let's be honest - She's gorgeous.

On the way to the Doctor.

         Gianna and her parents, Lisamarie and Victor.

           She got a boot, that couldn't slow her down!


                               The entire Guevara family!
                Greyson, Victor, Gianna, and Lisamarie.














I just couldn't help it, here is a picture of Gianna and I.