Today was a day of emotional ups and downs. We were no where near the dark depths we have been before, but definitely felt overwhelmed and frustrated to a point of discontent and lots of tears. It is so hard watching Lucy struggle to get well. I keep saying over and over, “she hasn’t even started fighting the cancer.” Well, all that changes tomorrow as Lucy will (baring any unforeseen problems) start radiation. Her first treatment is scheduled for 12:45. She will be sedated, but only with enough Propofol to help her rest easily. Each radiation therapy (RT) only lasts roughly 20 minutes. She then goes to recovery to wake up and we go about our business.
Lucy continued to run a fever today off and on, but it seems to be well maintained with Tylenol. When you have cancer, the general rule is to never give a child Tylenol when they are hurting or running a fever. It can mask infection and that can lead to a big, ugly mess. But since we have already established that she does indeed have an infection somewhere we have a little more flexibility in controlling the fever. They are watching a few cultures (blood, urine analysis and CSF through a shunt tap today) to see if anything turns up. Nothing specific has reared its ugly head yet, so we are PRAYING she just has/had a virus. Please, please pray that with us. We can not go home until they either know exactly what is going on or her fever dissipates on its own for more than 24 hours. We desperately want to get her back home.
We have been trying to get a PT consult worked into the schedule for some time now. Well, today it finally happened.
I was so glad, as this has been weighing heavily on my heart. She needs to be walking again and right now she just can’t do it without a lot of help. I was
pleased thrilled ecstatic after the Physical Therapist said that everything looked to be working properly, we just need to build up Lucy’s core strength and leg muscles. We will also be working on balance issues over the coming weeks/months. It will be a long process, but I know she has the determination to put in the hard work it will take. So tomorrow we are going to try to see if she will walk with a walker. I just hope her pride does not get in the way.
We have a busy day tomorrow and I am exhausted. Lucy, on the other hand, slept more than 1/2 the day and is wired. Right now she is playing Wii with her Daddy.
I keep asking her if she is tired yet and its a no-go. I am just hoping that once she actually goes to bed tonight we will all get a restful night’s sleep. I wish more than anything I was in my bed, Ella and Lucy sleeping together and Jack curled up in his crib. Hopefully soon…..
8:00 Abdomen X-ray
8:30 Abdomen Ultrasound
9:30 OT Consult
10:00 PT Consult
10:30 Audiology Consult
11:00 Photography Visit
11:30 School- New Patient Consult
2:15 Neurosurgery clinic visit
A day in the life of a new St. Jude patient.
To finish up, I wanted to share a couple of positive things that came our way today:
1. Dr. B read our last MRI and it appears that the tumors in Lucy’s back have not grown or spread. We are very excited about this news, as we all just assumed they probably would have since we have been so delayed in getting started with her treatment. God is showing himself in a HUGE way here.
2. It also appears that her spinal cord is rebounding well from where it had pressure on it from the tumor. This would explain why Lucy is making progress with her walking.
3. PT believes Lucy will get all her walking functions back with some hard work and lots of time.
This being said……please don’t stop praying for Lucy. Erik and I live every moment with the dread of what Lucy is about to go through. Radiation brings some unwanted side effects that we are praying will be kept to a minimal level. Actually, we are praying that God would perform a miracle and she will not have any side effects at all. And then once that is all done, we have to watch our baby suffer through 4 months of Chemotherapy. So again, our family covets your prayers and we need them now more than ever. Thank you so much for allowing Lucy to be a part of your lives.