Progress

 

Hailey after one of many surgeries

Hailey after one of many surgeries

June 2, 2013

Hailey still continues to function as normal as possible.  She still has trouble with her short term memory so it is hard for her to remember things that happened even the day before.  Hailey is currently taking medication for seizures which does make her tired a lot.  All of Hailey’s motor skills are great, her main focus right now is to increase her energy and to gain a healthy appetite. Hailey is currently undergoing  a rehabilitation program.  She will have some upcoming appointments with an optometrist, neurologists and will have an MRI in July to see the progression of the tumor that remains.  At that time future treatment or procedures will be determined for Hailey.

September 9th 2013

As many of you might know, Hailey is scheduled for yet another surgery on Sept. 12, 2013. After recent doctor visits and a series of tests and MRI’s, it has been determined that her tumor has grown back at a very rapid rate. Although the tumor is classified as benign, there are still several tests that need to be run in order to know for sure what exactly is happening.

Hailey has remained extremely optimistic despite the recent news. As many of you can imagine this is very serious and brings back all of the same risks and problems that were present in the first surgery process. We are all anxiously waiting to see what needs to be done to make sure that this is the last time that she needs to have brain surgery on the same tumor in the same spot. We will be keeping this page up to date as we are notified with more information. We continue to keep her in our thoughts and prayers.

September 12, 2013

UPDATE ON HAILEY! The surgery went well today (Sept. 12, 2013), Dr. Little, Hailey’s neurologist stopped by this morning and said that they will review the MRI and pathology report and meet with the tumor board. We should know by Monday evening what the next step will be. About 60 to 70 percent of the tumor was removed during surgery. The remaining tumor is growing into the brain which makes removal difficult without harming Hailey. Since the tumor will grow back unless completely removed, radiation treatment will take place. We should be meeting the radiologist and onocologist today. However, details regarding whether the tumor is cancerous or benign as well as future treatment will not be determined until the reports are read on Monday. The options for treatment are a stage 2 operation to remove more of the tumor then radiation treatment or just begin radiation treatment. The goal today is to have Hailey Erin Aiono sit up, eat, and maybe walk around. We trust and have faith in our Heavenly Father that he is mindful of our beautiful Hailey and we will endure the long road ahead whatever that may be. Please continue to pray for Hailey, we appreciate all of the love and support and prayers everyone has given us. I know Hailey is so grateful for everyone! God bless and thank you once again! #TeamHaileyAiono

The pathology report is not completely finished. The pathologist wants to keep an eye on it, compare it to last year’s reports and take a deeper look at the characteristics and changes the tumor has gone through. We do know it is no longer a ganglioglioma tumor like we thought last year.

Still so positive and happy!

Still so positive and happy!

The tumor has changed by becoming more aggressive and growing faster, the tumor is now classified as astrocytoma. The treatment plan is for Hailey to undergo radiation therapy in a few weeks for about six and half weeks as well as do chemo therapy in the form of a pill. The tumor board also talked about Hailey being a good candidate for a clinical trial. Trial drugs are safe but can sometimes be more effective at treatment. We are still not sure if the chemo therapy treatment will start simultaneously, during or after radiation. The conversation about trial drugs has only begun and we will continue to discuss this as we move forward. Hailey has been having some absentee seizures where she blanks out for a bit. Unfortunately, this will be something that Hailey will have to deal with. Hailey was discharged from the hospital on September 18, 2013 and is home. She has a follow up appointment next week to get her staples out and hopefully by then we will have the full pathology report. She still has a long road ahead but she is strong and ready to endure whatever comes her way.

 

November 8, 2013

Well first off, Hailey’s benefit rummage sale went amazing! Thank you for all of those who helped out with that event, we feel greatly blessed for everything you have done and continue to do. Hailey had a follow up appointment on Wednesday, November 6, with her neurologist and radiologist. She is responding well to the treatments and her numbers looked great. This week was Hailey’s fifth week of treatment. Unfortunately, today was not a good day for her. She was rushed to the hospital in an ambulance because she had a seizure at home. Hailey’s shunt was not working properly and the tube was defective. She just got out of surgery and is in the ICU, but she is still having seizures. She is going to have an EEG test soon to check her brain waves and hopefully find out why she is still having seizures. So please continue to pray for her, thank you so much!

February 4, 2014

We are a few months behind on updating Hailey’s progress,  sorry for the delay! Hailey finished chemotherapy and radiation on December 11, 2013. We were so proud of her finishing these tough treatments! On January 9, 2014 Hailey had a follow up MRI and EEG test to see how the tumor responded to the treatments. Unfortunately, we did not get the results we were hoping for. The neurologist gave us the heart wrenching news that the tumor was still growing and it has grown into the third ventricle of the brain. The doctor gave us two options, one, to do a more intensive chemotherapy that would be given through the form of a pill and through an IV, and two, to make Hailey as comfortable as possible and enjoy all of the precious time we have with her. Well ultimately Hailey made the decision and we all support her one hundred percent, she choose the second option, to enjoy the rest of her time here. Hailey is currently on hospice care and they were able to deliver a hospital bed for her to use to make her as comfortable as possible. She is still able to interact and definitely continues to smile as well as make all of us laugh. Hailey is still taking seizure medications to prevent major seizures from occurring.  Despite the difficult news and the unknown time frame we are all just so grateful that Hailey is not in any pain and that we have such a strong beautiful angel in our lives. Hailey is still with us and we will take advantage of every second we have with her. Thank you for the continued prayers, love, and donations. We could not have gone through all of this without the support of so many people. Words will never be able to express our gratitude!

February 19, 2014

Hailey continues to be on Hospice but tries to make the most of everyday. This past week Hailey’s sister Paige was able to visit her from Logan Utah. Hailey seemed especially happy this past week to have her sister by her side. She is still fighting every day to be as strong as she can. Its been very hard to see her decline over the past few weeks and to have to rely more and more on others to take care of her. We still feel so blessed to have her in our life. We count every day as a blessing that we have Hailey with us. We couldn’t be happier to server her as she continues to serve us in any way possible. We will keep you updated on any information. Thank you for your continued support and gratitude.

 

 

 

1 Comment

  1. Judy Smock Shannon

    Sorry we weren’t able to visit with you today. I am not feeling well and don’t want to spread any germs. Jerry and I will be in as soon as I’m healthier.