Two days after our original discharge date and we are still in the hospital…
We arrived in Portland Monday morning to get the scans we had anxiously been awaiting. Of course, we hit traffic and were late. I was so worried we would have to postpone it. We rushed upstairs to the imaging department, got checked in without a problem, only to learn that we were supposed to start sedation 13 hours BEFORE the scan!!! Apparently there was a miscommunication between our oncologist and the radiologist.
Our appointment for clinic and to be checked in for inpatient was still an hour and a half away but we figured we would try anyway. We lucked out and got pushed to the front. We had blood work drawn to make sure she was ready for chemo, saw the doctor, and headed to our room for the week.
Chemo started later than we had hoped due to hydration, but by 7 it was going. Last time we had this combo of meds, Charlotte did quite well. Vomiting didn’t start until a couple days later. This time, it was a couple of hours before it began. She was violently vomiting over and over until there was nothing left. They had her on full doses of all the anti nausea medicines she is able to take and nothing was helping. She slept a lot the next day.
Tuesday, we were able to do all of the scans planned.
After her second dose, within a few hours the vomiting began again. It wasn’t until the last dose that it subsided a little bit. Since then, she hasn’t been able to keep much of anything down.
Thursday night, they started her on TPN (IV nutrition) We were expecting to leave on Friday but the recipe for the TPN wasn’t the right one for Charlotte and they needed to tweek it. Friday we thought FOR SURE we would be ready to go Saturday but Charlotte’s potassium levels were low. They infused her with potassium and while her numbers went up a little bit, they weren’t high enough. At this point we were hoping to head home Sunday.
They messed with the TPN recipe AGAIN on Saturday night and raised the potassium levels. Around 3 am they checked her levels and at 5 the nurse came in to let me know they were dangerously low. They drew blood again and got a urine sample. They paged the pediatric renal doctor to help figure out what was causing this. FINALLY, around noon, the doctor came in to talk about what was going on. She said she believes that this is a side effect from the Cisplatin Charlotte was getting during chemo. Her sodium was very low as well, so she believes that the kidneys were getting rid of the potassium to hold on to the sodium. We will be here for at least another 48 hours in hopes of figuring out how to control these levels.
“Cast thy burden upon the Lord, and he shall sustain thee: he shall never suffer the righteous to be moved.” Psalms 5:22
With all of the disappointment in this post, we do have a HUGE praise!! The scans came back and her tumors are either stable or are getting slightly smaller with no new growth! The main tumor, above her left adrenal gland is the same size and is the one they plan to remove in surgery. Praise God for progress!
We are so grateful for your words, thoughts, and prayers! Pray for Charlotte, she is soooo ready to go home! Pray for her body to stabilize its nutrients, for her vomiting to subside, for an appetite, and for strength.
“But the Lord is faithful, who shall stablish you, and keep you from evil.” 2 Thessalonians 3:3
I am amazed at the response for the Go Gold shirts! It’s so exciting to see our support, there is one day left to order if you are interested www.booster.com/gracedbycharlotte If you can’t get a shirt, go gold anyway in support of childhood cancer awareness.
Penny Brown says
Jacqueline,I have no words that would begin to show my concern and care for your precious Charlotte.My thoughts are with you, my heart is with you and my prayers are for Charlotte and her healing.I’m so amazed at the strength and testimony you and your family share with others…I know that when we as Christians accept what is brought into our lives it is not God’s plan to have his children suffer, and once we accept and ask God to heal .it’s through his stripes we are healed.Jesus took those stripes so we wouldn’t have to….I pray for Charlotte and her healing because I know his word tells us that by his stripes we are healed and I believe God’s promise
Even though I’m distant from most of you that doesn’t keep me from paying for each of you and asking Gods mercy grace and life for each of you.Keep your faith and God will give you the strength you need..I love you very much…Aunt Penny
Tami Peter says
You are loved. Charlotte is loved. I continue to pray as your whole beautiful family goes through this challenge with such grace. I love you, girl.
Beth & Brian Skaug says
We’re praying for complete healing of Charlotte and for protection over your family as you’re fighting this battle. I have complete faith and belief that HE will heal her! Thank you Lord for the good news about the scans and we pray that her potassium levels raise so that you’re able to go home. Love you guys!
Lena Norton says
Oh my dears,
My heart aches with all you have had to go through. Please Lord Jesus, heal this precious baby girl to 100% health. Please take away all these tumors completely! Please Father! Thank you for the positive report and now bring things back to normal for this beautiful family.
I pray these things in Your precious, holy name, Amen
Betty Scott says
I will be praying for your sweet precious Charlotte and for your family. I will pray that not only he give strength to Charlotte , but for you her parents as well, as I know how hard it is to see our children suffer. My daughter had life saving surgery at 8 months of age and was in and out of the hospital for her first four years of life. I will be praying for all of you. God Bless You All !!!!!!!!!!!!!!
Jacqueline York says
Thank you so much! Yes we have our struggles some days, as I’m am sure you first handedly know. We appreciate your prayers
Deanne Ruble says
Dear Tyler and Jaqueline….my heart breaks for you all; I can’t even imagine. My prayers are and will continue to be with you all and especially with little Charlotte…God bless her little heart. Please know many people care.
Jacqueline York says
Thank you Deanne
Linda Mooney Graham says
Praying for sweet Charlotte!
Jacqueline York says