Kylie, Olivia, Cody, Isabella and Averi - June, 2010. We now know Cody, Averi and Isabella all suffer from Lynch Syndrome III

Wednesday, February 3, 2016

Bell is given DAYS to live....

Bell and Kylie yesterday afternoon.

As I sit here, next to Bell, my mind is racing. It's incredibly hard to find the words to express exactly how I feel...what I think..what I believe... Numbness, confusion, sorrow and fear invade my heart, but still a glimmer of HOPE lies inside my soul...

Here are the events of the last few days:

• Four days ago- I noticed Isabella'a helmet (she has to wear it to protect her brain until her skull is replaced) was starting to get tighter...yet she is continues to make daily improvements in her strength and speech.

• Monday morning-  Bell woke up complaining of a terrible headache (I was worried because morning headaches can be a sign of tumor growth).  I gave her Tylenol and got her ready to go to her 1pm doctors appointment. 

• Monday at 2pm-  Isabella has her appointment with Dr. Mason. She has blood drawn to send to Dr. Tabori in Toronto. The test is to check how well her body is reacting to the PD-1. 

• Monday 3pm- Isabella starts her 7th Pd-1 infusion. She happily eats lunch. I notice she seems more tired than usual. 

• Monday 4:30 pm- Isabella is done with her infusion. As we leave, she happily tells Dr. Mason and Kassie goodbye. They comment on how good they think she looks. And we head downstairs to the car. 

• Monday 5:10 pm- A few blocks from the hospital, Isabella starts crying that her head hurts. We turn around to head back to the hospital, and she vomits. 

• Monday 6pm- Bell is admitted to ER and given an MRI.  

• Monday 8:30 pm- The ER doctor inform us that Bell's brain is dangerously swollen (10mm midline shift) and they are very concerned her brain will herniate. They are amazed at how well she looks, in spite of how grim her MRI looks. She is started on high dose Decadron. 

• Tuesday morning 1am- Bell is transferred to the ICU. She is stable. I get to have another wonderful (sarcasm) discussion about our wishes to have Isabella resuscitated if and when her brain herniates. 

• Tuesday 10:20 am- Dr. Mason comes in to give me the latest update after reviewing Bells MRI with the radiologist. This is my interpretation of what he said:  

Isabella'a tumor has grown significantly, he has never ever seen a brain tumor grow this quickly. Surgery, in his opinion, is not an option because they would have to remove the entire left hemisphere of her brain. Some of this is likely do to the swelling caused by the Pd-1, but he feels very confident that the bulk of the mass is TUMOR. She probably has SEVERAL DAYS to 2 WEEK to LIVE! (I have to say, Bell is so blessed to have Dr. Mason as her Oncologist. He is one of the most wonderful doctor's we have had the privilege of working with)! 
 Dr. Mason agrees to give Bell another Remicaid infusion, to see if it will possibly help with the brain edema. And to send her MRI over to Dr. Storm in Philadelphia to get a second opinion. 

• 11am Tuesday- I sit down with the Pallative Care team to have the exact same discussion as I did 2 months ago, about end of life care for Isabella. 

• 4pm Tuesday- Isabella is given the Remicaid infusion. 
• 10am Wednesday- Isabella'a bone flap on the left side of her head looks substantially smaller and less swollen! She is laughing, talking (saying more words than yesterday) and being stubborn about the usual things she is stubborn about.

Do I think this is the end? 

My heart says, "No." I still stand in faith knowing God is in control. As much as I wish I knew what God's will was, I don't! 
I pray as always, that his will is in align with heal my sweet Isabella! I don't know what the next hour...the next second or the next minute holds for our beautiful child. I know Bell is in God's hands!! As unfathomable as it seems to me, God loves her more than I can even imagine. 


Thursday, January 28, 2016

Home after 59 days!

Bell yesterday before being discharged.

Isabella was finally discharged from rehab! She has made huge improvements in the last 28 days! Everyday she continues to get stronger! 
She is determined and as fiesty as ever! Lol! PT, OT and Speech Therapy will be coming to our home 2-3 days a week for continued therapy. 

Bells Pd-1 infusion was last Wednesday. The swelling in her brain has seemed to finally stabilize (we can tell by looking and feeling the left side of her head where the surgeon's removed her skull). The Doctor's have not decided when they will perform surgery to replace the skull. They are waiting for next MRI (in a month) to make the decision. We also feel confident that the other tumor in her left temporal lobe is not growing (hopefully shrinking) because she has been making tremendous strides and has not had a seizure in 2 months. We know before, the tumor was doubling in size every 2 weeks. 
Bell celebrated her 10th birthday on January 17th. It was a glorious day, knowing that Bell was not expected to live to see her 10th birthday!! Uncle James, Stella, Grandma Kristal and Marthew Stewart all flew to Pittsburgh for the celebration! We are so blessed to have such a beautiful and supportive family!!! Thank you for all the beautiful birthday wishes, cards and presents sent for Bell's birthday!! She was soooo happy!!!! And as always, we are so grateful for the continued prayers for our precious, Isabella!!! ❤️❤️❤️❤️

 3 Sisters, a Mom and a Grandma!
Olivia and Bell!
Grandma love!!

Kisses, Kisses and more kisses!!!
She did a great job blowing out her 10 candles...even though Uncle James bought trick relightable candles (he said he didn't mean too, I don't believe it). Lol!

Thursday, January 7, 2016

New Awesome accomplishment and laughing at silly stories about Uncle James!

Isabella walking for the first time with Physical Therapy. 

Isabella started walking with the assistance of a walker for the first time today with Physical Therapy!! It's was very frustrating and difficult for her but she did amazing!! Woo Hoo!!

My heart is filled with such Joy seeing the miraculous strides Bell is taking everyday.
In spite of having an exhausting and emotional day, Isabella is having a great night filled with lots and lots of happiness and laughter. She always loves hearing 
silly stories about her Uncle James, almost as much as I love telling them at my brothers expense. lol!! 
So tonight, I have decided to share this SILLY story, about my brother, James, that makes Isabella laugh and laugh and laugh (you may not find it as humorous, trust me, I didn't for quite a few years.Lol.)
James and the gooey, slimy Booger

I'm sure my brother, James, remembers the time (I sure hope he does because it's engraved deeply in my memory), we were both in high school. James and I, were laying in his bed, chatting happily about the events of our day at school (or so I thought) before I went to my room, to go to sleep for the night. When suddenly, completely out of the blue....I felt something GOOEY, SLIMY and GROSS hit the middle of my forehead (did I mention it was completely dark and I couldn't see a thing). He started laughing HYSTERICALLY ...and it suddenly occurred to me what the slimy thing was in the middle of my forehead. 

My wonderful brother thought it would be amusing to pick his nose, and since he didn't have a Kleenex to put his booger on, he decided it would be really really funny to flick this HUGE, SLIMY, GROSS, GREEN BOOGER at my face (during what I thought was a nice, non-arguing  brother and sister conversation) I was so mad!! I kept yelling, "I feel so violated," as I ran out of the room, which only made him laugh harder. If I take the time to think back on that night, I can still feel the cold, wet and gooey sensation of my brothers Booger on my forehead. It is something you can never forget. LOL.

Moral of the story:  1. There is nothing like a good booger story to brighten you and your childs day!!! 2.  Never ever trust your brother in a dark room when he has a nose filled with green slimy boogers. You'll never know, if and when you will end up with one on your forehead or worse your mouth!! 

    But, water is only one ingredient. Snot is also made of tiny particles that are in the air we breathe like germs, dust and pollen. When air debris gets trapped in your tiny little nose hairs, it mixes with snot or mucus and from there, can become a booger.

Tuesday, January 5, 2016

Bell's 8 new milestones since brain herniation and brain surgery!!!

Bell and her sister, Kylie, this afternoon.

Kylie, Olivia and Bell snuggling in her hospital bed!! 

  A couple days before going to Rehab. 

Everyday Isabella is making progress every single day!! She was moved into UPMC Children's Rehabilitation Center on New Year's Eve and this morning she had her 5th (nivolamab) Pd-1 infusion!! 

These are a few of Bell's new milestones:

• Bell took her first bath in the bathtub last week, before she was transferred to Rehab (one of her favorite things to do).

• The reflexes in her right hand and leg are getting stronger. She can now feel her right hand and leg (they were numb before).

• She is doing 3 hours of therapy everyday. One hour of Physical Therapy, one hour of Occupational Therapy and one hour of Speech Therapy, six days a week. 

• Isabella is starting to look forward  to Physical and Occupational therapy on most days. She's still her fiesty little self. Bell doesn't have a problem letting anyone know if she doesn't like what they are doing (apparently, I talk too much...since that's what she told me the other day. Lol).

• Bell is saying more words on a daily basis. She still is having difficulty expressing exactly what she needs at times, but is making strides forward everyday! (Her new favorite word to say is McDonald's)

• She's smiling frequently, singing songs and laughing at her sisters. (I don't think she finds me quite as humorous as her sisters..but Hey, I try. Lol)

• Bell can stand for a short period of time with assistance. 

• She can now almost fully open her left eye. Isabella has not been able to open her eye since the brain herniation and surgery to remove the left portion of her skull, on December 1st).  We are still unsure how much she is able to see out of that eye and if the vision in that eye will return. 

We had a care plan meeting today with the staff here, to discuss Isabella's treatment plan and goals. Her tentative discharge date is January 27th...and they are going to try to set up homebased Physical and Occupational therapy to help her continue to make progress when  she goes home! 

We just want each and every single one of you to know, how humbled and unbelievably grateful we are for every single card and gift sent, kind and inspiring word spoken, dollar donated to help with Isabella's care and prayer said for Isabella and our family! 

Thursday, December 24, 2015

Breathtaking Christmas Blessings!

A little after midnight tonight...Isabella decided she wanted to get out of bed, to go to the playroom for the first time in almost a month!!! Thank you Jesus, for the continued miracles and blessing you have bestowed upon our precious, Isabella!!! Thank you everyone for your continued prayers, inspiring words and the love you have shown our family!! May God bless each and everyone of you, as much as you have blessed our family!!!! 
Merry Christmas Everyone! Happy Birthday, Jesus!
FaceTime with Daddy!
Eating...her absolute favorite thing to do! Lol. She gained almost 4lbs in one day! The nurses insisted on weighing her again. Sure enough, her first weight was right!
Multitasking! Talking to Daddy and eating!
Isabella's first craft project, in a very long time!

My Dearest Averi...

Averi Marie Mading 12/12/96-12/24/2013

My dearest Averi, 
It's been 2 years since you left. I miss you every second of every single day! When I close my eyes, I still see your beautiful face and your radiant smile. I remember when you said to me, "Mom, you know I am going to die, and it's ok. I will get to be with Jesus, Cody, baby Matthew, Grandma and Grandpa." 
Your courage and strength have paved the way for your sister. You unselfishly tried everything you possibly could to find a cure for cancer, in spite of the pain you were subjected too. I am so proud of you, my beautiful angel. 
As you became weaker, you unselfishly worried about everyone else, instead of yourself. The last month of your life, you constantly worried about me....and wanted me to be happy. I'm sorry, I couldn't hide the pain in my eyes...from the fear of losing you. Life on earth, without you seemed still does. 
I vow to you, with all that I am, with every ounce of strength I have, until the moment I take my last breath...I will never ever give up, searching and fighting for a CURE! 

Romans 8:31-32 (NIV)

More Than Conquerors

31 If God is for us, who can be against us?32 He who did not spare his own Son, but gave him up for us all—how will he not also, along with him, graciously give us all things? 

Monday, December 21, 2015

Fourth PD-1 infusion, happening right NOW!

Isabella is getting her 4th, Pd-1 infusion right now!! We are so happy!!! I was so worried we were going to have a hard time convincing the doctor to give it to her!! Thank you, God! 
Bell was transferred Saturday night back to Pittsburgh. She continues to get stronger everyday. Right now, she is able to 
• talk (but has a hard time finding her words)
• feel the right side of her body (it was numb before surgery) 
• eat and drink anything she wants (she was not able to drink water for a few days after surgery)
• Smile, laugh and is back to her stubborn self. Lol. (She tells the nurses and physical therapist, No and leave me alone frequently! 
We are trying to get her into a short term pediatric rehabilitation program, they have near the hospital. Dr. Mason said, Isabella should be able to go home or into Rehab sometime in the next couple days! It's all such a beautiful Christmas miracle. Bell has a long journey ahead but with God, her stubborn and courageous personality....she is on her road to recovery!! 

Snoozing this evening after eating absolutely anything she can get her hands on! Lol.