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Thursday, May 29, 2014

Delilah Update

From Delilah's mom (my daughter):
Lyllah's appointment yesterday was scheduled for 1pm.
All of her previous appointments in this section of the treatment haveinvolvedher being put under anesthesia for a lumbar puncture to administer chemo so we prepared for this appointment the same way with cutting her off from food 8 hours before and clear liquid diet 4 hours before.

So we woke up just before 9am for a breakfast of black cherry Jello and water before her cut off time.  We left a noon, arrived at the appointment and checked in.  Lyllah entertained herselfin the waiting room with a holographic projector game of soccer on the floor.  After registration, got a room right away.  Then the fun began.

Lyllah started off the appointment whining because she had to leave the game.  Our doctor found our room without having to check the charts because she could hear Lyllah.  In an effort to help, our doctor offered to walk Lyllah to the child life room to pick out some toys to bring back to the room to play with.  Lyllah overwhelmed with choices and wanting to bring everything, began to go into hysterics when we stopped her from picking out toys because she had enough.  Back inthe room with the first picks, Lyllah continued to kick, scream, claw and even bite Michael (her dad) who decided to take her for a walk, calm her down while the doctor and I talked about the future treatments.

We discussed medication refills, the uncertainty that comes with the first port access and the possibility of family counselling to help us all cope with the extreme changes occurring in our lives.

Near the end of discussion Michael returned with a weepy Lyllah who wanted her mama.  After holding and comforting her briefly, Lyllah was back to her playful self wanting to explore the toys we had brought back to the room.  The nurse came in to apply a strong, fast acting numbing cream (which I got to apply because Lyllah instructed, "I want mommy to do it.")  The cream starts working in 10 minutes but they wait 30 to be safe.  During that 30 minutes a child life nurse came with a giant, pink puppet, that resembleda Jim Hensen muppet that had a port in it and a doctor's kit for Lyllah to play with (under supervision) to help explain to her what we were going to do today.

During this educational time for Lyllah I found out from the nurse that she would not be going under today and she could've been eating.  They promptly ordered her a tray of spagetti and meatballs with a banana on the side with goldfish crackers and apple juice to snack on while she waited.  After getting to eat and play with the Muppet, a team of 3 nurses came in for the first port access.

One was the child life nurse armed with an iPadfor distraction, another was there to hold Lyllah down with me and Michael and the third was of course doing the access.  The next few minutes seemed like hours of Lyllah screaming and pleading with all of us to let her go.  The nurse stuck her the first time and was able to flush but not draw any blood (it was later explained the first needle was to long and created suction against the wall of the artery).  They stuck yet again (this time with a shorter needle) but still could not draw back any blood.

It was decided at this point that the port was partially blocked by a clot and to stop trying to access it and talk to the doctor about where to go from there.  After holding Lyllah and soothing her, the child life nurse continued to play with Lyllah so Michael and I could talk to our medical team.

We had 3 options:
1) access the port to put in an anti-clotting agent (which would take 2 hours) and then try again.
2) Come back Friday to try the same procedure
3) Draw blood with a butterfly needle now and try the access next Wednesday.

It was already 5pm and money is tight so we wanted to avoid an extra trip so we opted for choice 3.  We had to pin Lyllah down again for a blood draw (by this time the 3 of us are exhausted from the afternoon) and the nurses prepared us to leave.

The nurses and doctors assured us that this was not a typical first access and next week should go more smoothly now that they know what to expect (and what size needle to use).

The only worry now is the trauma Lyllah went through will not be easily forgotten.  We'll just have to see what next week brings.

My mind's scarred from trying to remember all the detailsof this.  Updates tocome soonof the summer schedule/treatment plan.

***********

Lyllah got some girly time with big sis, Destiny, painting nails, drinking hot chocolate, and watching a movie. Today's looking better and better. And no, there is nothing wrong with Lyllah's forehead. She insisted on putting a band-aid on her "short-cut." The moments that make us smile make the rough times worth it.

Monday, May 26, 2014

Remember the Fallen

Remember the Fallen
Memorial Day 2014
©Blueladie Designs 2014

Sunday, May 25, 2014

Delilah

Many of you have been writing me asking about Delilah.  She is the same and 'holding her own'.  She is still in phase 2 treatment.  She gets chemo once a week and a home nurse comes to take blood for tests.  Yes the chemo is still by spinal at the hospital on an outpatient basis.  She is very upbeat, has good and not so good days and her mother calls her 'Miss Independent'.  She wants to do everything herself.  ;)

Thank you continually for all your prayers and caring.

Cathryn

Wednesday, May 14, 2014

I Can't Even Begin to Tell you...

How Hard this is on the family.  The following was posted by my daughter and says it best in her own words.

5/14
That was THE WORST ordeal we've been through thus far. Simple procedure. Been through it before. Except this time she was still asleep when we were brought back to her bedside. We were told we could start waking her up. BAD IDEA. She started off as she normally did being grumpy, not wanting to be touched then eventually calling for me. But then as I held her she started fighting again, pushing away, screaming, crying. She clawed me, leaving a small mark on my hand. OR called for transport, thinking when we were back in the room She would calm down. I held her for the wheelchair ride up. She was rigid and screaming and fighting the whole way. I had to wrap her arms in her blanket to restrain her from hurting me or herself. Got to the room. Lay her in bed. She starts trying to throw herself from the bed, head first. Michael has me leave the room at this point for a break because this is wearing on me. I get a cup of coffee and sit down in the main concourse across from the elevators. Michael calls me within 30 minutes. She still has not calmed down and he needs my help. I come back to find that she's been clawing both Michael and herself and banging her head on the guardrail of her bed. At this point we have to fully restrain her... ourselves. So I lay down next to her and wrap my legs around her legs to keep her from kicking and hold on to each one of her little wrists, holding her hands apart, so she can't claw me or herself. At this point we've been fighting Lyllah for 30 to 45 minutes and we ask for her to be given something to calm her down. As the Oncology team begins to contact the operation and anesthesia doctors to make sure that what they want to give her won't make her condition worse, Lyllah continues to fight full force. I don't remember exactly what happened in what order but at one point I let go of one of Lyllah's hands to get a hold of her legs again and she stuck her thumb straight into her mouth and bit down like she was trying to bite it off. Another thing was her screaming "stupid!" and some obscenities and then crying "this is not me!" All I could do was hold her and pray. After another 45 minutes of waiting on the docs to put in an order for some calming meds, she finally passed out. At this point I was in a rocking chair, holding her. She slept for only about 5 minutes and Michael took her out of my arms to place her on her bed. She woke, whispering, asking for her blankie, tv, a drink and some food. Our sweet little was back just like that. She had to potty and her poor little legs were so worn out she couldn't even stand. She did eat (blueberry bagel with cream cheese and the top of a blueberry muffin and Apple juice box, "2 please"). We had her dressing change done (another fight but the poor thing was too exhausted to do much more than cry) and then she slept in my arms as we waited to be discharged. We're home now. Lyllah's awake and quiet, watching cartoons, holding her blankie, pretzels and sippy with water in it. 

Cathryn

Update on My Grandaughter

Update from her mom (my daughter):

Saturday 5/10
Princess Delilah is back in the hospital – she was admitted over the weekend. She is repeatedly spiking fevers and turning red. Cincinnati Children's Hospital Medical Center is going to take her PICC line out on Tuesday and surgically install her port...

Tuesday 5/13
After having a fever last night, the doctors decided to reschedule her port placement until next week (exact date & time TBA). She will still go under tomorrow as scheduled for her spinal tap chemo treatment. Not sure of when she will be discharged. This depends on how quickly she can get off the IV drip (this will be determined by how much she eats and drinks in a daily period) and also they are still trying to determine the cause of the fevers. A few things they are trying is to take her off of her antibiotics (which the docs believe it's causing her diarrhea) to see if the fever returns or not. Another is they are going to take a closer look at the severe rash on her bottom (caused by the frequent diarrhea) to see if she has a skin yeast infection that wouldn't show up in the urine. Also, she's been complaining of a pimple hurting her ear. The doctor had observed this but it's not concerned unless it busts open and bleeds. Having been lethargic and clingy before we brought her in, today is a relief with her feeling better and being more happy and active.

Wednesday 5/14
All procedures for today (Spinal Tap & Chemo) have been placed on hold due to the fever, concern over infection. 
Delilah is slated to get the Spinal Tap & Chemo tomorrow and the port next week, possibly.

Delilah ordered breakfast: Fruit Loops with milk, blueberry bagel with cream cheese (cut up, please) and a blueberry pop tart (just in case).
I guess she's feeling fruity! Lol

She ate half of her bagel for breakfast. She is off her fluids for good as long as she eats and drinks good. She also has been on the go all day. 

As always, your support and prayers are awesome and most appreciated by all of us.

Cathryn

Sunday, May 11, 2014

Delilah Update

Delilah has low hemoglobin so they are going to give her a blood transfusion.  They are still checking for infections because of her fever and she is due for a picc/port change so they will keep her until Tuesday at least.

Thank you for your continued prayers and support.
Delilah's grandmother

Saturday, May 10, 2014

One step forward and two steps back

Princess Delilah has been spiking a fever since yesterday on and off trips to ER.  They are going to admit her tonight until they find out what's wrong.  (Initially they gave her antibiotics- fever broke, but now it's back again.)

Thank you for your prayers.  They are most welcome and appreciated.

Cathryn

Wednesday, May 7, 2014

Princess Delilah Update

Update from Rebecca / Mommy
#Quote
"Today was Delilah's spinal tap to administer some chemo. She also received some Vincristine (another chemo) through her PICC and was sent home with what's referred to as MP6 – a chemo that is taken orally for the next 28 days. Delilah woke from the anesthesia in a rather good mood (no one was sent to the corner, LOL). 
After an early, exhausting morning, she is now resting peacefully.

During her nap we had an exciting phone call from get doctor: Delilah's bone marrow final screen came back and she's officially in remission!

Note: There still may be a few lurking around in there but not enough to be easily found. What this means is her first month's s treatment in the hospital was a success and we will stay on schedule with her treatments to prevent it from coming back.

Next week, Tuesday, we go in for Delilah's PICC to be removed and replaced with a port. This will be a small disk placed over the top of her heart that will make access for blood draws and administration of chemo easier and allow Delilah to not have so many physical restrictions (such as no swimming). The procedure will take approximately an hour and is scheduled for 1pm.

The hardest part for Delilah is no eating 8 hours before-hand.

We will have to arrive at the hospital at 11am for pre-op preparations." #EndQuote
- See more at: http://www.youcaring.com/medical-fundraiser/-delilahstrong/162745/update/162519#sthash.I0C54vOQ.dpuf

Tuesday, May 6, 2014

Princess Delilah Update

Posted Monday, May 5th:

Update on Princess Delilah:
Delilah has been more active and being more happy everyday. After a busy weekend being out of the house she never wanted to come home. But when it home she enjoys playing with her dress ups and coloring books especially her brother and sister.
Delilah still has insecure moments when she cries or gets frustrated but those are less and less as the days go on.
Tomorrow, Delilah will have a visit from home care who will draw her blood and then on Wednesday she has her procedure for her spinal tap (which will administer her chemo) and her bone marrow biopsy (to check for relapses).
Thank you to everyone who is keeping us in your prayers.
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Sunday, May 4, 2014

Friday, May 2, 2014

Delilah's First Day Home

Still receiving thoughtful packages!










Destiny falling asleep - glad to have her sister home.


Delilah Went Home Yesterday!

Praise God!
One step in the journey completed.  Now on to the next!  Weekly trips for tests and treatment plans.

We can't even begin to tell you how grateful we are for your prayers and support and ask that you continue through this next phase.  Thank you so VERY much!!!

Cathryn

Thursday, May 1, 2014

Blueladie Designs Newsletter & May Design

Is out.  See the website (link above) for subscription information.

This is the new design:
© Blueladie Designs 2013