Thursday Clinic Visit - Maintenance Round 9

THE HARSH TRUTH

***WARNING: THIS POST CONTAINS GRAPHIC PHOTOGRAPHS.

Today's clinic visit consisted of the following:
1) Port access
2) a blood draw
3) Lumbar Puncture with Methotrexate, Cytarabine & Hydrocortisone (Intrathecal Chemotherapy)
4) Vincristine (Chemo)

Our clinic visit usually starts at home with the application of EMLA (numbing) cream on Kaitlyn's port, which we call "magic cream" because it helps (I question how much) with her port access.

Once at Umass, Mike drops Katie & I off at the door and we head up to the 2nd floor while he parks the car. At this point, they know us by face and usually have us registered before we get there so that we don't even have to stand in line anymore.

In the waiting room, Katie plays with this activity table for a few minutes before they call her name. She always wears a mask the second we step into the hospital because she doesn't need to pick up any stray germs in that place.














Once her name is called, it is straight to the scale...

Here, Nurse Joan, gets Katie's weight, height & blood pressure. We love Joanie :-) She was the nurse with us the day Kaitlyn was diagnosed and she couldn't have been more loving toward all of us on that day.






















Then, we are on to the "Infusion Room" where "Fun Chris" brings something to keep Katie entertained while we wait.















After a short wait, we go back in to an exam room to have Katie's port accessed. This is NEVER a pleasant experience. Even though the nurses are VERY good at getting the needle in the right place, they still have to lay Kaitlyn down to access her port. They tell us that it is just because of the placement of the port, some kids can sit up, but Katie always has to lay down. Luckily, she does not squirm, flail or try to get away in any way, so they can usually get it accessed in one try.






























Once her port is accessed, they draw blood for her CBC's.

After the blood draw, Katie is happy to sit up, get her shirt back on and go back to the "Infusion Room" to play some more while we wait for the CBC results.





















After an hour or so, the CBC results come back to show that her Absolute Phagocyte Count (APC) Count is high enough to begin the next cycle. This cycle includes a lumbar puncture.

In preparation for the lumbar puncture, Kaitlyn receives a dose of Zofran, which is supposed to help with nausea and vomiting after the Intrathecal Chemo. This takes about 1/2 hour to go in through her port. Then, it is off to the procedure room (Exam Room 2) for her lumbar puncture.















The LP starts with a "Time Out" to verify they have the correct patient, procedure and procedure site.

Then the moderate sedation is administered. Both Versed & Fentanyl are used during these procedures. Versed creates amnesia, while Fentanyl is used as an analgesic.





















Once she starts to get "loopy", they lie her down in the "fetal position" in order to open up the spaces between the vertebrae as wide as possible. This allows the doctor to easily find the spaces between the disks where the needle will be inserted.

Here, Dr. Keuker thoroughly sterilizes the area with iodine.















Then, liquid anesthetic medicine is injected into the tissues beneath the skin to prevent pain. Kaitlyn usually responds to this portion of the procedure by repeatedly saying, "Ow, Ow, Ow, Ow..." until the needle is removed and the anesthetic takes effect.















Once the area is numbed, the spinal needle is inserted. This needle is thin and the length varies according to the size of the patient. It has a hollow core, and inside the hollow core is a "stylet," another type of thin needle that acts kind of like a plug. When the spinal needle is inserted into the lower lumbar area, the stylet is carefully removed, which allows the cerebrospinal fluid to drip out into the collection tubes.















A collection of spinal fluid for testing whether there are any leukemic cells in her central nervous system. This usually takes about 5 minutes as the spinal fluid drips out excruciatingly slow.

During the procedure, Kaitlyn looked up at us and said, "I'm brave". I thought Helen was going to lose it as we all started to tear up at a statement that couldn't have been more true at that very moment.


































After the CSF sample is collected, then the Intrathecal Chemo is administered.



























Once the procedure is complete, Katie has to lay flat on her back for 45 minutes in order to let the medicine travel through her central nervous system. At this point, she can also finally eat something, which she usually does. Today, she had apple juice and peanut butter crackers which she promptly vomited up afterwards. Then she fell asleep. These lumbar punctures seem to hit her harder and harder every time.















Once the 45 minutes are up, then her second chemo can be administered.





















Today, we had to wake her up for her second chemo injection. As you can see, she is completely exhausted.



























On the way home, she vomited three more times in the car. It was not a fun ride at all. I felt so bad for her and I wish that I could take it all away. I would switch places with her in a heartbeat if I could. Her pain is my pain and I HATE that there is nothing, NOTHING I can do to make this go away.

This cycle will consist of the following:
Vincristine - Day 1 (same dose as previous cycles)
Methotrexate (oral at home chemo) - Days 8 & 15 (same dose as the last cycle)
6-mercapturine (oral at home chemo) - Days 1-14 (same dose as the last cycle)
Dexamethasone (oral at home steroid)- Days 1-5 (same dose as the last cycle)

Next planned clinic visit will be in three weeks, October 8th.