Ask people to pray for Alexa

We lost Alexa about 2 weeks ago. The official cause of death was ARDS, Acute Respiratory Distress Syndrome. Basically, she got an infection in her lungs that they couldn’t treat because of her other problems.

She was a real sweetheart and the world has lost a very precious little girl.

Thank you to all who have sent caring thoughts and prayers for her since I opened this goal. Obviously, it has been a tough time for her family. Please continue to keep them in your prayers, if you would.

Alexa had been doing pretty well (cancer still present but not growing or spreading) until a week or two ago, and then she developed a lung infection of some type. She’s been in the hospital for the last 10 days, but has recently taken a turn for the worse. Her lungs seem to be failing, despite everything they can do for her. Even on a ventilator, she is not getting enough oxygen.

Please remember Alexa and her family in your prayers, if you pray, or send good vibes, or whatever you believe in. This is the greatest fight for her life so far.

Alexa needs prayers. She’s been having a lot of pain for the last day or so and she’s just miserable. Up until the last week or two, she had been going strong, so it’s quite a shock for the family to have turned around so suddenly. Please keep her family in your thoughts and/or prayers.

Alexa lives in Texas, but her grandparents live in Oregon, so Alexa’s family are visiting in Oregon over Christmas. Alexa had never seen snow before, and this morning it snowed where they’re staying! What a great experience for Alexa – a White Christmas.

Alexa still has cancer all through her body, but with the experimental drug, it has not been rapidly progressing. Her family is thankful to have had another Christmas with her, as they were told not to expect Alexa to live this long.

Alexa’s little brother was born on August 8. His name is Zack but Alexa says it like “Dak”. He was in good shape and not terribly underweight. He was able to go home after just a few days. However, he has an abnormal hormone level that looks like it’s going to require some treatment. Needless to say, poor Alexa’s parents are beside themselves with stress and worry. Between Alexa’s condition and this new health problem of the baby’s, they’re definitely feeling somewhat abused by life.

Alexa’s health continues to deteriorate, but very slowly. I think she’s outlived the original estimates of the doctors, although they don’t really talk about that specifically. While her tumors continue to grow, she’s able to enjoy life fully with just a little pain medication. There’s still no real hope for a cure, but just having this time with both of their children is very precious. Every day is such a treasure to them – it’s too bad it takes a crisis like this to make people view life like that.

As if this family isn’t dealing with enough already. Alexa’s mom is at about 36-37 weeks along and they discovered today that there’s a problem with the placenta and the baby is very small and underdeveloped for how far along she is. He will need to be delivered via c-section soon. The family is very upset at the thought of having another child with a serious health problem and they’re even more stressed now. Please consider adding Alexa’s baby brother to your prayers, if you pray.

Alexa is still fighting. She tried another round of the MIBG but it was not successful this time. Pretty soon they’ll begin another experimental treatment, but it is not intended to be a cure, only to slow down growth of the cancer. While there is evidence of tumors that are causing her some level of pain and discomfort, the pain can be managed, so overall she is happy and able to live each day to the fullest. And they do indeed pack a lot into every day. If only every child was adored and appreciated the way Alexa is. She has had more experiences and adventures than many kids do in their entire childhood.

Another exciting thing is that Alexa is going to have a little brother any day now. Her whole family is very excited and they have been praying for Alexa to survive long enough to meet her little brother. Alexa is 3 years old now and is able to understand the idea of “baby”. I expect she’ll be a jealous but doting big sister. I am so happy for the family that they’ll be able to have a new little one, and have the whole family together for a while. It’s bittersweet.

...Alexa seems to have had a delayed response to the MIBG treatment and stem cell transplant from several months ago! Things have turned around for her just in the last couple of weeks! It’s not a cure, or even a remission, but it’s an improvement. She’s completely off the pain medication and now they can try some other treatment options to see if they can achieve a cure or a remission. It’s really nothing short of a miracle.

...still going strong. She’s requiring regular pain medication to control her discomfort from the spreading cancer, but it’s not slowing her down. They had a great big Christmas party for her, just in case she’s not well enough to enjoy Christmas in a few weeks. It was so exciting to read about, so I thought I’d share portions of it here:

At the end, Santa presented her with the biggest gifts that the Buyers/Executive team had gotten for her. The first one had legs that stuck out the bottom and when Alexa went up to it, the head moved around and made a sound. I couldn’t believe my eyes when she pulled the wrapping off and it was a PONY! A pony that neighs and snorts and responds to sound, light and touch. It was unbelievable! Through my tears I saw the look of happiness on my baby’s face- a gift too precious for words. It was so thoughtful and so generous and so special. I will never be able to say thank you enough.

To top that off, the other gift was a Barbie Jeep!!! Can you believe it? Alexa hopped in and after a very short lesson on where the gas pedal was, she took off crashing in to everything and making people chase her around to help her (mainly Santa). She thought that thing was the best ever. She didn’t get out of it for the rest of the party. We can’t wait to unveil it again tomorrow so she can ride around in our neighborhood.

Right now she is sleeping in her new fairy outfit next to the pony. Yes, the pony is in bed with her. What a nut.

Alexa is almost entirely free of pain and feeling well for the moment. Her parents have both taken a leave of absence from work, so they are spending all of their time together, making memories and enjoying life while it’s still good. It’s sad, of course, but there are also a lot of happy things in it. Last week they visited Walt Disney World, Universal Studios, and Sea World on a Make-A-Wish trip. It was so wonderful reading about each magical day they spent there. Now they are visiting family and friends, and doing some preparation for the home hospice care they plan to have. I keep hoping for a miracle, but I know it is extremely unlikely. Still, it’s natural to hope.

Please continue to pray for strength for the family.