Encouraged

KK has received so many cards and gifts over the last two months.  Even though she was unable to read many of the cards when they were delivered because of her double-vision, God knew just when she would need the encouragement.  She started reading the cards this morning and it was just what she needed after yesterday.  Thank you!  We appreciate all your prayers very much.

Therefore encourage one another and build each other up, just as in fact you are doing. 

~ 1 Thessalonians 5:11

Hair Loss

17 days into radiation.

11 days into chemo.

KK lost a full cornrow of hair today.  It was a very emotional moment.  Now, we're talking about when to shave the rest.

Radiation should end June 22.

Chemo should be done on June 28.

Good Medicine

While waiting for radiation on Friday, Dr. Marcus came over to check in with us. She asked KK how she was feeling. Of course, the doctor meant physically, but KK shared what hurt most...that she was feeling lonely.  

I explained to my parents how important it would be to bring KK to church on Sunday if she was feeling well. I knew it would do her heart good.

This morning, KK had "clinic day" at the Jimmy Fund Clinic so we moved radiation up and we were done with everything by 1:00. As we were driving home, I figured out that if we didn't hit any traffic that we could make it to HCA before school ended. I knew that visiting the school would be "exactly what the doctor ordered". We made it with plenty of time to spare.  KK was greeted with many hugs and smiles. It was very good medicine!

A cheerful heart is good medicine, but a crushed spirit dries up the bones. 

~ Proverbs 17:22

Worshiping Together

I am so thankful my parents were able to bring KK to church for first service this morning.

The last time they tried to bring her to church was on Mother's Day. It was a rough day and all KK wanted to do was lay down in Bethany's office. Looking back, we now know that she was experiencing increased cranial pressure at the time.

Today was so wonderfully different! First of all, she walked in without the assistance of a walker. She was able to love on some of the babies and toddlers whom she adores. She stood among some of her friends chatting for a bit. Best of all, we were able to worship and take communion together.

New 'Do

Check out the new 'do!

Solving A Puzzle

It's like trying to solve a puzzle without the cover picture for reference...

Maybe the nausea and vomiting yesterday was caused by something else altogether -- low blood sugar.

Just as we were arriving at the Brigham yesterday at 3:30, KK said she was hungry.  I offered to get her something to eat at Au Bon Pain, but she said she would be okay.  On our way home from Boston last night, she said she was really hungry and we talked about going out to eat.  We hit a bit of traffic (mostly on route 9 in Southborough and Westborough) and it was getting close to 6pm.  She started crying and we figured out that she was crying because she was hungry.  Almost as soon as she started eating, she started to perk up.

KK woke up this morning and said she was hungry.  She started crying as she was "taking care of business".  I told her to take a few deep breaths and when she was done I would give her a banana.  Almost as soon as she ate the banana, she was fine.

I realized that the poor girl has no fat stores to sustain her for long periods of time (like dinner through breakfast).  So there will be a lot more grazing throughout the day to keep her blood sugar from plummeting and a banana when she wakes in the morning.

Side-Effects and Symptoms

Nausea...

Vomiting...

Fatigue...

Everything seems to have the same side-effects.

Chemo...

Radiation...

Failed Shunt...

I am learning not to go immediately to a "failed shunt" when KK throws up. I have to remember to look for secondary symptoms.  

Does she want to lay down immediately?  

Is she irritable and impatient?

Does she have a loss of appetite?

KK woke up crying then threw up this morning. She immediately wanted to eat. She watched a movie to distract herself (and it worked). She had a good day otherwise. We're fairly certain it is not a failed shunt (I called neurosurgery to keep them in the loop though).

This afternoon, KK was very nervous and scared going to radiation. She was worried that something may have gone wrong and she would have to have another surgery. We talked about all the different reasons why she may have thrown up. We also came up with a few things to do to help (being more proactive with Zofran, deep breaths, etc.).  

KK is also learning not to go immediately to a "failed shunt" when we go to Boston after she throws up.

Home Again!

We are home and I am just feeling settled enough to sit down and write this.  The beds are made, the dishes are done, the floor is swept, the last load of laundry is in the dryer, and KK is sleeping peacefully.

The first time we went to the ER on April 8, there were dishes in the sink, laundry needing to be done and I completely forgot to take out the trash that morning (thankfully, my parents took care of the trash for us the following week).  Basically, I learned not to leave the house in a shambles when going to the hospital.

The second time we went to the ER, I made sure I packed a bag "just in case" and everything was in its place (though it was too early to take out the trash for the week and my parents had to do that again).

After 7 days at home and 4 trips back and forth to Boston for Radiation Therapy, I got a little complacent and forgot the lesson I learned.  I knew something was wrong Monday night.  Yet on Tuesday morning I left dishes in the sink and on the stove, laundry in the washer (mom put it in the dryer for me), trash in the kitchen and on the deck (my parents took care of the trash yet again), and to top it off I handed all of my keys to the valet when we parked at Dana Farber and my parents didn't have a spare set to get into our place (dad had to go to the valet to get the house keys).

I am packing an overnight bag to leave in the car.  Even if I'm cleaning up vomit at midnight, I will make sure the dishes are in the dishwasher and I will start it before going to bed.  My parents now have spare keys.  So, I will be prepared for the next time -- which means there won't be a next time, right?

PTSD

So, one of the doctors suggested that KK and I both have PTSD this morning.  Ya' think?!?!

I believe -- I know -- that miracles happened during Friday's surgery.  KK is talking better, she is not as "floppy" (KK's description) on her right side, she is walking really well, her appetite has returned, her double vision is lessening and she is opening both eyes.  The signs I attributed to increased cranial pressure yesterday were totally unexpected with all the wonderful things that were happening.  Thankfully, those signs have not been replicated today.

I feel like the dad who cried out to Jesus to help his son, "Lord, I believe. Help my unbelief!"

Advocate

KK woke up this morning and wanted to do something outside of the room, so I wheeled her over to the playroom, but it wasn't open yet.  When we got back, the chief resident of neurosurgery came in and talked about going home tomorrow if the CT scan they ordered looked good today.  KK ate breakfast and did great with PT walking the floor and climbing stairs afterwards.  Then we went for the CT scan.  The neurosurgery team did not come by with the results after the CT scan, but the nurse told us that it "looked good" though there was a bit more fluid than when the EVD was in (hmm...).  After lunch, KK said she wanted to take a nap and planned to go back to the playroom after she snoozed.  Around 3pm, I woke her from her nap.  She was a bit weepy and saying, "I don't know why I'm crying" (this sounds familiar).  I wheeled her over to the playroom and we played a round of Trouble.  By the end, it was getting harder and harder for her to play.  When we finished, she asked if she could go lay down (uh-oh!).  As we left the playroom, she started to cry quietly again.  When we got back to the room, she immediately got in bed, started crying and saying, "I don't know why I'm crying", then started to gag and throw up (ugh!).  I asked the nurse to let the neurosurgery team know what was going on.  The resident on call came over and he dismissed us by saying, "The CT scan looked good this morning".  I was not happy and told the nurse as much.  I know that it doesn't take long for a catheter to get clogged and pressure to increase...I have seen it happen all too often in my little girl.  So the nurse paged the chief resident and informed him of what happened to keep him in the loop in case it happens again.  KK will be monitored closely and I will advocate that we will not leave until KK can sit up for longer periods of time without increased cranial pressure causing her to throw up.

By the way, she looked better after throwing up and had a good evening.  She watched TV for quite a while and ate a good dinner.  She was even willing to get up to go to the bathroom (which surprised me because I didn't expect her to want to get out of bed again).

Praising God!

KK is out of surgery and doing amazingly well!  She is talking up a storm (word recall doesn't seem to be a problem), eating mac and cheese and broccoli, drinking a strawberry smoothie, and using her right arm!

One hour post-surgery!

The neurosurgeon said the fluid pressure was still elevated (27) even with the EVD.  She made sure that the shunt system and catheter were flowing nicely.

Praying for Tomorrow's Surgery

Surgery #9 is scheduled for 11:00am tomorrow.  The plan is to internalize the shunt again.

KK and I were just talking, praying, and crying (not necessarily in that order) about the surgery.  I reminded her that God's Word tells us not to be anxious about anything, so we talked about the things that we are most anxious about tomorrow's surgery then prayed.

Here are our heartfelt concerns...

KK stated that she is afraid that something might go wrong again...and with a history of shunt failures (especially after the results of the third shunt failure), I am apprehensive as well.

At the same time, I know that internalizing the shunt is necessary.  First of all, she can't go home with an EVD.  More importantly, KK has experienced immediate pressure build-up whenever the EVD is clamped or kinked causing her to vomit twice today.

This second point is most disconcerting to me.  I am worried that something more than fluid is causing the pressure.  When they unclamp the EVD, she experiences relief from the symptoms, but she is not dumping excessive amounts of fluid...in fact, she is not draining much fluid at all after these occurrences.  I am concerned that Charlie is growing again.

So, here we are praying and crying out to God to give the doctors wisdom and to work miracles tomorrow.

By the way, KK held it together better than I did until I told her that people all over the world are praying for her.  Thank you, prayer warriors, for going to war on her behalf!

Surgery #8 Update

Today's surgery went well. They drained a lot of fluid and placed a new EVD (external shunt). The neurosurgeon, Dr. Stone, noticed a big difference as she was waking up from surgery and said she was much "brighter". While we were in the PACU, KK asked for a smoothie and mac and cheese...a sure sign she is feeling better!

KK's right side -- especially her arm -- grew progressively weaker throughout the day. Her right arm is still weak post-surgery and she hasn't been able to squeeze her hand yet.

The EVD seems to be working well. There is a strong "wave" (which never happened with the other EVDs) and her ICP (Intracranial Pressure) numbers are good.

I don't know what the next steps are...I hope to have that discussion with neurosurgery tomorrow.

Another Surgery

KK has been having headaches, vomiting, and other symptoms since Sunday night. During her clinic evaluation today, I shared my concerns and they ordered a CT scan. This revealed massive fluid build up on the left temporal horn. They are prepping for surgery now to insert another EVD (external shunt). Please continue to pray.

A Hopeful Mother's Day

I am so grateful that I had the opportunity to celebrate A Hopeful Mother's Day with my sweet girl yesterday.  This post by Mary Beth Chapman says it best...

http://showhope.org/word-mary-beth-chapman-mothers-day/

Tears

Lots of tears have been shed over the last few days...some for known reasons and some for unknown.  Please pray for God's peace that passes all understanding.

Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.

~ Philippians 4:6-7

References for Philippians 4:7

• Cross References

• 10 4:7 - Isa 26:3 ; S Jn 14:27 ; Col 3:15
• 11 4:7 - Eph 3:19

New Normal

Our day begins with medicine and PICC flush (just call me Nurse Mom).  

Off to work.  Bethany set up a comfy sofa bed for KK in her office so I can do some work at church.  

In the afternoon, we head into Boston for Radiation Therapy.  (I still need to coordinate outpatient Physical and Occupational Therapies so we can do them while we are there.)

More meds and another PICC flush before KK goes to bed.

But it doesn't end there.  Poor thing has to be woken at midnight for more meds.

And then there will be "clinic days" that will be all day events. 

So, that's our new normal...at least for the next 6 1/2 weeks.

Home!

KK was discharged this evening and we are home!

We will be making daily trips into Boston for Radiation Therapy and we are trying to coordinate Physical and Occupational Therapies so we can do them all at once.

Radiation Therapy Begins

KK began Radiation Therapy today.  We wheeled her over to Brigham and Women's Hospital for 9am.  KK was very emotional. She didn't understand why she was crying, but I knew it was because it was new and she wasn't sure what was going to happen. I stayed with her while she got on the table and they secured the mask to the table so her head wouldn't move. Then they brought me back to the room where the techs do their job and I can talk to KK through an intercom. Because she was still a little upset, I sang "Jesus Loves Me" over the intercom (usually I just sing in her ear).

They ended up having technical difficulties, so we had to come back later in the day. The second time, KK did not cry at all. In fact, she was so relaxed that she almost fell asleep on the gurney as we waited for her turn.  

Radiation will continue daily (Monday thru Friday) until June 19 (this could be extended if we miss any days).

Perseverance

Perseverance is a great word to describe KK's attitude and effort.  Some days are more emotional than others.  Even through the emotion, KK has been willing to do everything the therapists and medical teams have asked of her.

Today was one of those "more" days.  Physical and Occupational Therapies are especially hard with her loss of muscle control on her right side.  She cried during the first of two Physical Therapy times.  She expressed how she had no idea why she was crying, asked for a hug, then proceeded to do all the exercises she could remember before the therapist told her what to do.

This afternoon, KK laid down for a nap about 5 minutes before the Physical Therapist returned.  KK was exhausted and getting up was the last thing she wanted to do.  As soon as I reminded her that doing the Physical Therapy exercises would help her muscles get stronger, she got up and was ready to do everything Ms. Kelly asked her to do.  She even climbed up and down stairs...which is one step closer to going home!

Therefore, since we are surrounded by such a great cloud of witnesses, let us throw off everything that hinders and the sin that so easily entangles, and let us run with perseverance the race marked out for us.

~ Hebrews 12:1

Moving Up in the World

We moved from Medical Surgical ICU to the floor today!

We are now directly across from Neuro-Oncology on the ninth floor.  It is definitely an upgrade for me with the ability to eat in the room, a fridge, bathroom and shower in the room, and, thankfully, better sleeping arrangements.  KK likes the big screen TV.  It is much quieter up here as well.

We will miss the nurses (shout out to Kristina, Lisa, and Stephanie) and a couple charge nurses (Lou-Lou and Mary) in the MICU, but we are glad to be moving up in the hospital world!

PVCs and PICC lines

KK has been throwing a few PVCs (Premature Ventricular Contractions) since her heart arrhythmia which I mentioned in yesterday's post.  It has been a little disconcerting since her vitals have been strong all along and they only seemed to appear after the arrhythmia.  Today's nurse noted that they seem to happen when she lays on her left side...which is the side where her PICC line was inserted during surgery the day before the arrhythmia.  She wondered if leaning on the PICC line was "tickling" her heart, so they just had X-ray come to see if this could be the source of the PVCs.  It certainly would do my heart good to find the cause of the PVCs and rectify it.

Doing It!

KK is impressing everyone!

KK is up and out of bed!  She is sitting in a chair feeding herself as I type.

She was pretty emotional before getting up.  She cried, "I am doing it! I am doing it!" once she was up.

She did PT from the chair this morning as well. She is still weak on her right side and needs support standing.  They will be doing PT twice a day now to help her get her strength back.

Cardiology came in this morning and listened to KK's heart.  They have been monitoring her since Wednesday and think she is doing really well.  Her heart rate is still higher than normal, but they aren't concerned about that.  There were a couple PVCs (Premature Ventricular Contractions) Wednesday night and Thursday night, but they are few and far between, so they are weaning her off the Lidocaine.  Please pray for her heart to beat steady and strong.

She begins the anti-viral meds today.  Please pray that they will start doing their job quickly and for minimal side-effects.