Thursday, April 30, 2015

Happy Adoption Day!

The girl has been NPO for a couple days...
nice way to start eating again!

A Scary Day

Yesterday was a scary day.

KK had a fever most of the day that went from 103.4 to 102.1 to 104.  They were only able to give her Tylenol for 24 hours post-surgery, but it didn't touch the fever.  They tried ice packs and a cooling blanket as well.  They did cultures and ruled out infection. She had some rigor (shaking) that escalated throughout the day to the point where her whole body was shaking uncontrollably.  During this time, her heart rate kept climbing.  Around 4pm, her heart rate was above 150 bpm and she started having arrhythmia.  She was at a 4 -- which I have no idea what that means except to say that the doctor explained if she gets to a 10 they would be doing chest compressions.  He explained that if they weren't able to get it under control that they may have to do interventions like a breathing tube and asked if this is what I wanted to do.  He also said that I should call anyone that I wanted to be there.  I called my parents and just said, "Come."  I texted Pastor Derek with one word, "Come".

One of the doctors from Dana Farber happened to come by when all this began.  He sat down with me at the back of the room and interpreted for me all that was going on.  He also noted that I had a ChapelCares t-shirt on the day before and asked if I was a Christian.  He said that he was a Christian also.  He reassured me that Jesus was in control and that KK was in The Best Hands.  He said he would pray for us as well.

They were able to get the arrhythmia under control with medication.  They did an echocardiogram and her heart was fine.  Once we were given permission to give her Toradol (motrin through an IV), they were able to get her fever down and the rigor began to subside.  Her heart rate was still high (between 120-130) for quite some time.  Finally, around 3am, her heart rate was around 100 and I was able to rest a bit.

Today, we celebrate the 6th anniversary of our adoption day!  KK has had a good day thus far.  She has done Physical Therapy, Pet Therapy (I left to take a shower and missed that), and Occupational Therapy.  They removed the EVD (external shunt).  She also had a visit from my parents and my aunt and uncle from Florida, as well as Mr. Hayward from HCA.  She is exhausted.  I worry every time I see her twitch or feel even the slightest rise in temperature, but both of our hearts are doing better.

Tuesday, April 28, 2015

Adenoviral Vector Trial

The Adenoviral Vector Trial (AdV-tk) is fascinating.

FYI, the Adenovirus is an upper-respiratory virus that doesn't cause disease.  It is genetically "turned off" before being injected into a tumor.

KK is one of 12 people participating in the second tier of Phase I of this trial.  Each tier of Phase I receives a higher dose of the viral vector to find out what dosage can be given safely. The first tier has already been completed.

The AdV-tk was injected into the tendrils (remains) of Charlie during surgery today.  The next step is for KK to begin taking anti-viral medication.  The idea is that the anti-viral meds will break the Blood-Brain Barrier (BBB) which traditional chemotherapy has difficulty breaking.  This will help the body's immune system begin fighting the virus in the tumor.  It will also allow the radiation to be more effective.

The side-effects of the AdV-tk are minimal.

KK will begin taking the anti-viral medication this week and radiation therapy begins May 5.  If KK is discharged from the hospital, radiation therapy will be outpatient.  We will make daily (Monday thru Friday) trips to Boston for 6 1/2 weeks (each session will last about 15 minutes).  She will have to start taking a chemotherapy pill, but that start date hasn't been set yet.  KK is excited that she should not lose all of her hair.  There may be a couple of small bald spots where the radiation is given and the hair they shaved for surgery has already started growing back.


First things first...Surgery was uneventful and KK is recovering (sleeping) in the PICU.

The anesthesia team came to the PICU around 12:30pm to get KK and she was in the OR just before 1pm.  God was gracious to me by allowing KK to be very relaxed and peaceful all morning.  After KK was asleep, the first thing they did was put in a central line.  The neurosurgeon, Dr. Goumnerova, began her work around 2:15pm.  She was able to remove more of Charlie, inject the adenoviral vector into the tendrils that remained of Charlie, and create a pathway between the cavity and the temporal horn so it would drain.  She placed an external shunt in a new position through the cavity to the temporal horn to keep the pathway open and communicating (draining).  Her plan is to eventually wean this out.  She saw scar tissue in the cavity which was a good sign of healing from the first surgery and noted that the medicine used to reduce swelling seemed to be working (which is why KK was regaining strength on her right side).  Surgery was done and they began closing around 4:15pm.  They brought KK to the PICU to recover.  We waited in the family lounge while they got everything settled.  KK started crying a bit, so the nurse came to get me.  I sang "Jesus Loves Me" and she was able to calm down.  She is doing pretty well with her neuro checks -- squeeze, push, pull.  She did have a little trouble with some word recall when answering questions (though she did know the name of Miss Bethany's dog).  She is now resting comfortably (or as comfortably as she can considering she will be woken up for neuro checks every hour).

Thank you for praying!

Surgery Today

Surgery is currently scheduled for 11am.  

KK is doing pretty well. We are both hopeful that creating a pathway for fluid to drain out of the cavity where Charlie was/is will relieve the pressure and swelling, and that KK will regain full strength.  

Please pray that Dr. Goumnerova and her team are able to do everything they set out to do. Pray especially for no complications for KK.

Monday, April 27, 2015

Today and Tomorrow

Creating a mask for
radiation therapy
Today has been a busy day...

In-room visits with nurses, doctors, physical therapists, ophthalmologists, anesthesiologists.

A visit from Mrs. Hayward that she slept through.

Going over Adenoviral Vector Trial details.

Going over Radiation Therapy details.

Going on an adventure to Brigham and Women's Hospital to create a mask and map out where the radiation will be given.

Impressing everyone with the amount of food KK could eat and starting to feed herself.


Surgery is scheduled for tomorrow.  I've heard first thing, mid-morning, and 1:00pm.  "First thing" is definitely not happening any more.  I suspect that we will head down mid-morning and surgery will begin at 1:00. Gotta love "hospital time".

The goals for the surgery are to (1) remove more of Charlie, (2) inject the Adenovirus, and (3) form a pathway for the fluid in the cavity to begin draining thus negating the need for either an internal or external shunt (Praise God!).

Sunday, April 26, 2015

Every Little Victory

KK had a good day today.  She was up for a few hours this morning doing very well.  She met with the Physical Therapist once, but did the exercises over and over for every doctor and nurse that came in the room.  She took a little snooze, then woke up a bit groggy just to eat lunch (unfortunately, not the cheeseburger she wanted...just clears).  After lunch, she took a long nap.  When she woke up, she had a great afternoon/evening eating, drinking, talking, and simply impressing everyone.

The doctors are very pleased with her progress.  The external shunt had a clog in it this afternoon.  Dr. Dustin was able to flush it out.  I'm so grateful they externalized the shunt!

I will meet with the oncology team tomorrow to discuss details of the clinical trial.  Surgery to remove more of "Charlie" and start the adenoviral vector trial is scheduled for first thing Tuesday morning.

I am praising God for every little victory!  Thank you for praying!

Saturday, April 25, 2015


This is KK's theme song for this journey...especially for the last two days.

Yesterday and today were hard.  Hard for me to see my baby girl struggle to form words.  Hard to see her not wake up when all the doctors loudly called her name asking her to open her eyes. I'm sure it was hard for KK to try to do everything that was asked of her and not be able to do it.

KK only had a few moments where she was lucid enough to communicate and do what we asked her to do.  Those moments were so short and so far apart.  During those lucid times, she fought with all the strength she had to do all that was asked of her.

This afternoon, she woke up during the MRI and stayed awake for three more hours.  When she got settled back in the room, she cried, "I thought I was going to be able to go home."  We cried together and I reassured her that she was right where she needed to be and would go home as soon as she was well.  Her speech was still slow and labored, but she was much clearer.  She was also using her right hand more and did a few other things that we asked her to do (kick, give five, etc.).

Praise the Lord -- she is getting STRONGER!

Cool God-moment

Pastor Derek brought my stuff to Boston since I was on Life Flight and couldn't bring anything with me.  The doctor on the PICU floor was putting an IV in KK when he came in.  After talking for a bit, the doctor asked if we were Christians and told us he is a Christian as well.  He then asked to pray with us. 

God has gone before us and is in this place!!!

Friday, April 24, 2015

OR, Med Flight, and Children's...part 2

Nurse Rudy & Jorge
prepping for Life Flight
Last night was rough to say the least.  It is so hard to see KK with limited mobility on her right side and to hear her strain to talk.

KK made it through this morning's surgery to externalize the shunt, then recovered in PICU while we waited for Children's Hospital to have an open bed. She slept most of the time and was difficult to rouse for neurological checks.  She still has weakness in her right side, difficulty forming words and slurring. 

Dr. Bill, who I originally met frantically working on KK  last night trying to get her to talk, move, kick, etc. in recovery, came to visit us in PICU this afternoon and said, "She looks so much better." I asked, "How bad was she?" All I know is that my sweet girl is a fighter and God is carrying her through this.

Arriving at
Children's Hospital
The Life Flight crew came to the room at 4:45pm. After prep and transport to the helipad, we (yes, I got to fly in the helicopter) were at Children's in 15 minutes. The next 3 hours included a flurry of activity.

We just got back from CT. They will wait until morning to do an MRI. The OR is booked for Tuesday, but they will amend this if the scans show the need to do something sooner.

KK is now comfortable and I know she is in capable hands.  

OR, Med Flight, and Children's

CT scan this morning revealed no worsening overnight. The doctor here has been in communication with Children's. They want one more procedure here to stabilize her better for med flight transport, so KK is back in the OR. The swelling is in the cavity where the tumor was/is which is not communicating with the area the shunt is in. Children's is thinking that they may drain that area at the same time they begin a vector trial.

Fervent Prayers Needed

There is no bleeding, but Charlie is "angry" and is causing a lot of swelling.  They are giving her meds to reduce the swelling. Everyone is on high alert.

KK is weak on her right side (unable to squeeze tightly, difficulty lifting her arm and leg, slight palsy in her face), has slurred speech and is having difficulty forming words. They tell me that she is doing better. I cannot imagine how she was doing before.

Please pray for complete healing for my sweet girl. 

Thursday, April 23, 2015

Urgent Prayer Request

Coming out of anesthesia, KK had weakness on her right side. They are bringing her to CT to see if there is bleeding. Neurosurgery is ready to go back in.

Clogs and Transfers

The catheter was clogged again. The doctor said it may be that cancer cells are trying to drain...I laughed and explained that I've been saying all along that Charlie is trying to make a dramatic exit.

They will be transferring KK to Boston tomorrow. The attending neurosurgeon at Children's Hospital is up-to-date on her case and they have a bed!

Shunt Revision #3

KK ended up with another CT scan around 5:30pm.  It revealed that something is still not right.  They did another shunt tap to figure out if the shunt failed again or if it was more of an issue with the tumor and spinal fluid pressure building up causing KK's nausea and vomiting.  If it was the latter, the plan was to drain some of the fluid so KK could be comfortable through the night and then talk about options (which would include another craniotomy...the option being whether to do it here at UMass or to transfer to Children's Hospital).  They did the shunt tap and weren't able to get any fluid (unlike yesterday when the pressure was at 36) which means the shunt probably failed.  So, KK is in the OR again.  The doctors are talking to Children's to help us transfer KK when she is ready. 


We thought we were going home today.  The doctors came in and gave KK and I the good news.  I started getting things in order, texted a few people that we got our marching orders, then felt KK's forehead.  She felt really hot.  Within seconds she was throwing the blankets off then started throwing up again.   Needless to say, we are not going home today.  Since then she has had other issues, so now there is a question of whether or not this is shunt related or gastrointestinal.  If she throws up a second time, they will do a CT scan right away. 

On a happier note, the music therapist, Miss Cara, came and sang with KK again (we saw her when we were in the PICU last week).  KK sang "Jesus Loves Me" for her and Cara prepared a couple songs just for KK: "Tomorrow", "In the Garden" and "Somewhere Over the Rainbow/Wonderful World". 

Pushing It or Shunt Problems?

KK had a great night and started out really well this morning.  She still has had a low grade temp. After sitting up for a couple hours, eating a decent-sized breakfast, visiting with a slew of hospital staff (nurses, P.T, O.T. and Child Life Specialist) who just wanted to say hi, and talking to residents and P.A.s about how she is feeling, she felt a little nauseous.  Nurse Jackie, KK and I talked about what to do -- whether or not to give her Zofran (anti-nausea medicine). Ultimately, KK has decided to try to sleep it off and promised to call for help if she feels worse.  I am hoping she just overdid it and that it is not a symptom of another shunt failure. 

Prayer requests for today:
  • KK would like you to pray that she can go home today. 
  • Please pray for wisdom. 
  • Pray that the shunt will function properly. 
  • Pray that we will hear from Dana Farber/Children's Hospital today.
  • Pray that we will have opportunities to share the hope we have in Jesus with everyone we encounter.
  • Pray for complete healing in my sweet girl's body.

Wednesday, April 22, 2015

Post-Op #4

The neurosurgery team found that the shunt valve was only working intermittently.  When the doctors checked the first time it was working fine.  So they continued looking for the cause of the problem, but couldn't find anything wrong.  When they got the test results back from the shunt tap, it revealed no infection.  So they checked the valve one more time and it wasn't working.  They replaced the valve and double-checked the original valve after it was removed which confirmed that it was only working intermittently. 

Thank you, God, for allowing them to see it not working the second time!

When I spoke with the doctor after the surgery, I reiterated that I knew something wasn't right when KK was vomiting through the night.  She agreed that we need to take vomiting seriously sooner than later because when KK has cranial pressure that is how it presents itself.

In the OR again

KK and Chloe, pre-surgery therapy
After breakthrough fevers and more vomiting, they finally sent KK for CT scan (number 5 for those of you who are counting) at 2:30pm. We were barely back in the pediatric ward and the doctor was there telling us KK had to have another surgery. KK was upset.  Thankfully, she had enough time to spend a few minutes with a pet therapy dog named Chloe before the surgeons came to the room and did a shunt tap to test the fluid for infection. Immediately afterwards, we were brought back down to the OR and now we wait to see what they find. They may do an external catheter to drain it until the infection (if it is an infection) is gone...

Pray that they are able to fix what is going wrong so we will be able to go home for the weekend, especially if we're going to start at Dana Farber next week.

Speaking of Dana Farber, tomorrow is the new patient review. Pray for God's favor.

Rough Night

It was a rough night last night.  Her temp was up yesterday around noon so the doctors decided to keep her one more night.  This part was rough on me -- I cried as I told Nurse Jackie that we were staying, and she said, "I just want to give you a hug."  At 5pm, KK began vomiting again.  It was then that I realized why we were still here.  KK was given Tylenol at 5:15.  By 11pm, KK's temp was down and I was cautiously optimistic.  However, KK began vomiting again at 2am.  Around 3am (I'm a little fuzzy on the time), her temp was up and they gave her another dose of Tylenol.  It didn't go down after an hour, so they ordered blood cultures and the woman came to draw blood at 4:15am. Two of Dr. Cataltepe's Physician Assistants came by this morning to find out what's been happening and they said Dr. Upadhyay (part of Dr. C's team who did the Shunt Revision) will be up after she gets out of the OR.  The P.A.s did take out the sutures from the first two surgeries and KK did awesome. 

I "secretly" have been praying that the clogs were Charlie trying to make a dramatic exit. 

Praying for God's perfect will, not mine, to be done. 

Tuesday, April 21, 2015

Shunt Revision

On Sunday and Monday, KK was nauseous and vomited 4 times.  I called the doctors at UMass after the fourth time and started packing “just in case” while I waited for them to call back.  From what I described,  KK's pediatrician, Dr. Hunt, suggested that the shunt tubing may be clogged.  When the neurologists called back they told us to go to the ER just to be sure something had not gone wrong with the shunt.  Sure enough, the tubing (catheter) was clogged and KK had a third surgery (shunt revision) last night.  I was very clear that the anesthesia they used for the first surgery worked well for KK and the one they used for the second surgery did not, so she did much better this time around.  When she woke from surgery, KK immediately told the recovery nurse that she was feeling much better and she seems so much better to me!  We were hoping to come home today, but KK’s temp is up and they want to monitor it tonight.  Thankfully, they will take out the stitches tomorrow from the previous two surgeries before we leave and we won’t have to make another trip on Thursday.

Please pray for KK’s fever to come down and a speedy discharge tomorrow.  Continue to pray that “Charlie” (the tumor) understands that it has been given its eviction notice and to leave my little girl.  We are still awaiting word from Dana Farber.

Thank you for praying!

Sunday, April 19, 2015

Doctors, Trials, and Different Tumors...Oh My!

Thank you to all who continue to pass on info like the Duke University polio virus trial. Unfortunately, many of the trials and names of doctors are for adults only. The other thing that needs to be considered is the kind of tumor it is (KK's is a Glioblastoma Multiforme grade IV).

I know that Dana Farber/Children’s Hospital is on top of all the state-of-the-art neuro-oncology care and they are geared specifically for kids and teens.  Here is the link to the doctor that our friend has connected us with:,-MD,-PhD.aspx

Saturday, April 18, 2015

Jesus Loves Me at HCA

KK had an opportunity to visit HCA on Friday where both Teams A and B sang "Jesus Loves Me" with KK.

Friday, April 17, 2015

Thursday, April 16, 2015

Pray for KK

Walking with Nurse Barbara post-surgery
KK began experiencing headaches, stiff neck, torticollis, lack of appetite, nausea over 9 weeks ago and double vision on April 4.  We went to the ER on April 8 where they discovered that these were all caused by a grade 4 glioblastoma multiforme tumor that KK has named “Charlie”. It was deep inside the left side of her brain and there was also a large amount of fluid trapped near it.

KK was scheduled for a tumor excision on April 10. A hard conversation we had in the wee hours of the morning before surgery will give you a glimpse into my daughter's heart: "If I leave this earth today, Jesus will be waiting to give me a hug; if I don't, you will give me a hug." The procedure began with a trip to the PACU at 10:15am and ended back in the PICU around 9pm. KK was, in the words of nurse Peter, “remarkable”. She had no trouble coming out of anesthesia. However, we had trouble keeping her pain levels down the first day after surgery because KK has such a high pain tolerance and wouldn’t tell us until it was a 5 or 7 out of 10 (which would be off the charts for me).

KK had a follow-up MRI on April 11 to see how much of “Charlie” remained and to find out if the fluid would be able to drain on its own. The results showed that about 2-3 cm of residue was left and the fluid was not draining. So, KK had a second surgery on April 14 to have a shunt placed to drain the fluid. KK had a very difficult time coming out of anesthesia this time (a different anesthesia was used that was supposed to have less side-effects, but instead she experienced severe nausea and vomitting). A follow-up CT scan and shunt imaging revealed that it was working properly and the fluid was draining.

Through it all, KK has been amazing. I am so proud of her! Everyone loved her; she was so endearing. As she was vomiting after the shunt surgery, she said to the nurse, “Thank you for taking care of me.” She was well spoken and asked relevant questions whenever anyone asked if we had questions. She understands very well all that has happened and what is ahead for us. KK tires easily right now. She has a walker to help her with balance while walking and is wearing an eye patch to help with double vision. She covers her stronger eye when she is sitting and her weaker eye when she is moving.

I have a friend that is a spinal surgeon that contacted the Chief of Neurosurgery Emeritus at Boston Children’s Hospital about KK’s case. The two of them then connected with the Director of Pediatric Neuro-Oncology at Dana Farber who wants to fast track us. Unfortunately, UMass did not get her scans and records uploaded in time for their weekly meeting where they review new cases on Thursday. So we will need to wait another week before the group will meet again. Waiting is not what anyone wants to do with KK’s situation. Pray that God will move mountains to somehow get her case “on the docket” sooner than next Thursday. I don’t know for sure what Dana Farber’s plan will be to eradicate what is left of “Charlie”, but it is most likely a combination of directed radiation and a chemo pill.

Please pray for God to bring complete healing to my little girl.