Author Archive: 'Carrow McClendon

About 'Carrow McClendon

Kayleigh is a bright, fun, beautiful, 7 year old, little girl that was diagnosed with DIPG on May 11, 2016. This site is to share her journey and prayer requests.

July 15, 2016 – 12:06 pm

12:06 p.m.
She’s Back!! Not just back to the room but really back to herself. Even groggy on morphine she’s being her cute, sassy self. She has not had anything to eat since dinner on Tuesday night. By last night she was in tears because she was so very hungry. When she woke from sedation she started crying and asking for food. Finally, the neurosurgeon came in after she was settled and asked is she was hungry. She looked him dead in the eye and said “no… I’m hangry!!” Our room full of doctors died laughing.

They told her she could have some jello, and she was not impressed. Then pudding, she said “weeeell… how about I can have a Hershey Bar?” She ended up agreeing to chocolate ice cream. I have to agree, that is way better than jello. I’m proud of those brassy negotiating skills!

She is resting now. The incision in her belly is the one that is hurting her. They have given her morphine which has helped. Please continue pray for no complications, no infection, and speedy healing.

We are so thankful for this amazing team. Our girl is back. Thank you Jesus 💜

July 15, 2016 – 7:15 am

It is 7:11 am EST and Kayleigh has just gone back for the shunt surgery. Her head is hurting very badly this morning. We are praying this surgery will give her immediate relief.

Please pray for the surgeons to have sure hands. That God directs their every move. And that relief is immediate and long lasting for Kayleigh. Please pray for no complications, no infection, no issues for Kayleigh.

God is good. Thank you Jesus for another beautiful day. I will update as I hear more. The surgery can take up to 4 hours.

July 14, 2016 – one more

Hopefully we are tucked in for the night! Kayleigh’s scan and symptoms point to increased cranial pressure due to fluid build up because of enlarged ventricles… All of that makes it sound like I know more than I do. Basically, fluid isn’t draining properly so her body needs some help. The doctors here, as well as our St. Jude team, all say it could be inflammation from the radiation. Honestly, we don’t know. What we do know is that surgical intervention can make life better so that is the route we are going to go.

Tim and I both have a spirit of peace. We are impressed with the entire staff here. They have been fantastic. They tell us the surgery itself should take about an hour. Of course we have anesthesia before and recovery after but still, it should be a half day affair. As long as there are no emergencies tonight Kayleigh will probably their first patient tomorrow morning (around 7:00 am EST). They will be placing a shunt in her head under the skin that drains into her stomach. Considering what they are doing, the procedure is actually minimally invasive. Once it is in and they observe her for a day or two we should be able to head north. Where we go after this will be determined by how she does.

Please pray for the doctors to have sure, sturdy hands guided by God himself. Pray for supernatural wisdom on their parts as well. Pray for peace for Tim & I as we wait. As always, pray for complete and miraculous healing!

We cannot begin to thank all of the amazing people who have helped us in this journey, from the ambulance, nurses, doctors and our liaison Lee in Jamaica, to the REVA medflight team, to Miami children’s, to customs & boarder patrol – everyone has been kind, attentive and amazingly helpful. Thank you all for helping us take care of our precious girl!

Until tomorrow,
‘Carrow💜

 

July 14, 2016

Here are today’s posts in order so far. I will post again tonight once we have a finalized plan…

4:45 a.m.

She has opened her eyes on her own and has been talking to me. Thank you Jesus!! Med evac was delayed until 7 am so we are holding steady waiting for them to arrive.

We are still concerned about the increasing pressure in her head so hopefully Miami Children’s will have a good plan for us. Thank you so much for the way you have covers us all in prayer. Please keep praying!

9:15 a.m.

We are loaded on the plane and about to take off for Miami. Kayleigh is awake, responsive, and inpatient… Thank you Jesus!! Please continue to pray we are able to clear US customs quickly. Our next stop is Miami Children’s.

Keep praying big!
‘Carrow💜

2:00 p.m.

Thank you so much for your prayers! God cleared a path for us to get state side quickly and with very little fuss. Even Tim flying with his passport card was not an issue. Every person we came in contact with this morning has been amazingly kind and helpful. We know this could have been a huge fiasco but though God’s infinite grace and all of your prayers, this difficult situation has been manageable.

I have told God, on many occasions, that I will do whatever it is He asks of me. I certainly don’t know what His plan is for all of this, but He has shown His faithfulness to us at every turn. So for now, I will just continue to tell you all the Parables of Kayleigh and pray that our story encourages you.

Hug your loved ones close tonight. You never know what tomorrow will bring.

Much love – until later,
‘Carrow💜

5:00 p.m.

We need prayers! We are waiting to talk to the neurosurgeon here at Miami Children’s. We had hoped the medicine would help relieve the pressure and surgery would not be necessary – but, Kayleigh is becoming more symptomatic. The headache has returned even after the large doses of steroids, she is nauseated again, she is more tired, and her speech is slowing down.

The neuro team has been on standby for her so we are waiting for them to come talk to us and finalize a plan. Please, please, please pray that the doctors will have clear direction as to what needs to be done and that they will be able to relieve the pressure in the Lear invasive way possible. We are taking about surgery on her head and that scares me.

Thank you Jesus that we are in the states and will be able to get home more easily. Thank you for this talented team and great hospital. I hate that this is needed but I know God is at work. Please Lord, direct the entire teams thoughts as they craft Kayleigh’s plan. And please have your angels by Kayleigh’s side at every moment keeping watch over and protecting her.