Wednesday, July 29, 2015

MRI and BTC Update

We are home (a significant event in KK's mind) and KK is exhausted. I am not sure where to start, so I'll just start at the beginning...

We checked in at Children's just before 11:45 this morning. When the nurse came out to get KK, she started talking about doing an IV for the blood draw and contrast. I was confused. First of all, I thought the blood draw was going to happen through KK's PowerPort at the Brain Tumor Clinic (BTC) at 3pm, so I did not put Lidocaine cream on her PowerPort ahead of time to be ready to access at the MRI. For some reason, I was also unaware that the MRI today was to be an MRI with contrast. In all honesty though, it probably wouldn't have registered with me to prepare KK's PowerPort to be accessed for the contrast even if I was made aware of it. 

As all of that was going through my mind, I saw the panic in KK's eyes. She is a hard stick and we had hoped that having a PowerPort would keep her from having to have an IV. I was able to convince the nurse to do the blood draw and contrast through the PowerPort. This meant that we would have to wait half an hour for the Lidocaine cream to work. So we went back to the waiting room for 30 minutes, then they brought KK back to a prep room for the blood draw. Well, blood draws with KK are always an adventure. After trying four times, two nurses were simply unable to draw blood through the PowerPort and they had to insert an IV after all. The nurses introduced us to a Lidocaine spray to numb the area where they want to place the IV -- we will definitely be requesting this for any future IVs! We were very thankful that the nurse was able to get a vein on the first try.

During this time, the people for the MRI came in three times to see if we were ready. By the time KK was finally ready, another patient had an emergency MR Vent Check which meant we would have to wait for KK's MRI. (KK and I are familiar with emergency Vent Checks and totally understood.) At this point, I called over to the Jimmy Fund Clinic to let them know that we were going to be late for our BTC. KK finally went in to the MRI at 2:05 and was done by 2:50. She slept through the whole thing.

We then headed over to Dana Farber to the Jimmy Fund Clinic where KK was able to eat a quick lunch before they called her back to meet with her team. When we met with the BTC team, they said that the MRI looked as they expected. Dr. Mimi explained that they want the virus (AdV-tk) that was injected into Charlie to create an immune response where her body, in conjunction with the anti-viral drugs that KK took for two weeks after the injection, would start attacking the virus and Charlie.  This response creates swelling (picture a cut that is infected and the redness and swelling that takes place when your body tries to fight the infection) which is what was pictured on the MRI. Today's MRI will be her baseline and the next MRI will be in 8-12 weeks.

What the team really looked at today was KK -- how she looked, talked, and responded to all of their checks. The doctors were very encouraged at KK's progress.

Dr. Manley, who was unable to be there today, will take another look at the scans tomorrow. We will go back next Tuesday to talk to him about next steps (which will include rounds of Temozolomide and Avastin). 

Thank you for your continued prayers!

8 comments:

Matt Bullock said...

Encouraging that they saw what they were looking for! I'm so glad KK was able to sleep through the MRI! Hugs and prayers! Matt and Nadine

The Delaneys said...

We love you! Thank you for sharing with us. Thankful she slept through the MRI- the kids prayed that she would ��

Kelly Canney said...

So happy that the scan came back like they expected. will continue to pray for peace for KK (and you) and you await the news of the next steps.

Anonymous said...

KK is on our daily prayer list. Glad for the encouraging report of the days events! We miss you guys! and will continue to pray for you both. Much Love, Theron, Beth and kids.

Judy Bleau said...

So glad to hear the good news! You are in my constant prayers <3

Christine OBrien said...

Praise God! KK has been in our constant prayers and on the kids hearts many times this summer-we continue to pray!

Susan Jacobsen said...

Thankful for what they saw and I hope you are encouraged! May the Lord continue to direct your steps and give the medical team wisdom in how to treat KK. We continue to pray for her daily! With His love...

Kacey said...

Glad to hear that they finally found what they were looking for. Glad for you as i was crossing all fingers and toes in the hope that things will work out. My husband and I have to go to the clinic together as I need an MRI too. So really nervous but you and your blog give me the strength.

Kacey @ Glendale MRI