Aug 8th, 2008 August 8, 2008

“When you are sorrowful look again into your heart, and you shall see in truth you are weeping for that which has been your delight.”

 

Grayson was our delight and we will miss him for eternity. He was our little warrior and fought valiantly until the end of his life here with us.  Grayson died in our arms, peacefully, in the comfort of our home. We find solace knowing Grayson will endure no more pain and that his suffering will not go in vain. One love, all of our love channeled through him, and his love channeled through all of us.

 

Our lives are inexplicably fuller from his presence.  We feel grateful and blessed and will forever cherish the time we had with him. He touched so many… and so many have touched us through Grayson’s life.

 

Grayson’s Memorial Service will be held Wednesday, August, 13^th, at  Bel Air Presbyterian Church at 11:00 am. 

Bel Air Presbyterian Church

16221 Mulholland Drive

Los Angeles, CA  90049

 

In lieu of flowers you can donate in Grayson’s name for pediatric brain tumor research through the Talbert Family Foundation (please refer to the Grayson fund section of the blog).

ONE LOVE…FOREVER!

August 5th, 2008 August 5, 2008

Grayson passed tonight at 6:30pm.  He went peacefully in our arms. We are blessed with 2 1/2 years of his overwhelming loving presence….forever in our hearts.

We will post service information in a couple of days.

ONE LOVE

August 2nd, 2008 August 2, 2008

It has been a difficult week and as it seems it may become worse.

As of mid-week, Grayson has not been able to wake up for any prolonged period of time. As this progressed he was unable to eat or drink. Our only option when this happens is to go to the ER for hydration. Our most recent MRI has shown that the tumor has more than doubled in size and he has a great deal of swelling.

 

Leslie and I along with our caretakers decided to put Grayson on hospice.

 

The hospice option allows us all to provide the care needed at home and thus eliminates the ER trips and hospital stays. Essentially he can be at home.

 

There are some drawbacks in terms of the continuous treatments. However, at this time this is what is best for Grayson and the family.

 

We met with the Hospice providers on Friday. Friday also happened to be Isabella’s 5^th birthday. When the hospice folks were here Grayson had a series of seizures. Additionally his heart rate and blood pressure were extremely high. The concerns were immediately heightened. We had to administer some immediate anti seizure meds. The nurse was concerned that if we could not get control over the situation (heart rate, blood pressure and seizures) that Grayson might not make it through the night or next few days.

 

We were however able to stabilize Grayson. Throughout the next several hours and into the early morning we had our primary doctors coming over to our house to access the situation. We were relieved that he was stabilized. Hospice has provided us with new meds to be given rectally, as he has lost his ability to swallow.   We are continuing to use IV hydration nightly because he is unable to eat or drink.  Hospice will provide 24 hour nurse care if needed and social work services to help support Bella and Everett through this time. He stayed stable throughout the night, and continues to stay that way for now.  He rests peacefully and comfortably in our bed. 

 

Grayson is able to hear us and holds our hands and communicates in his way to us.  He still appears to be playful, as he will occasionally reach for a stuffed animal or toy near by, still with his eyes closed, but we believe he knows what he is doing. 

Leslie’s parents will be here tomorrow. My family has been here for most of the day playing and swimming with Everett and Isabella.

 

We hope and pray.

 

He is strong. He has a heart of a lion. He is beautiful to look at. He is also peaceful.

 

We are being strong as a family. We are thankful to everyone for your kindness.

 

We love you Grayson.

 

ONE LOVE

 

August 2008…Messages from family and friends. August 1, 2008

If you would like to write a note to Cliff and Leslie…please just add a comment here. Click on Comments and add what you want to say under “Reply”. (Your reply may not automatically show as it has to be “accepted”. ) Also, to view previous messages, scroll down to the previous month’s posts and view comments.If you want to read updates from Cliff and Leslie, click the category on the side titled “Updates from Cliff and Leslie”.

July 28th, 2008 July 28, 2008

Please forgive me for the recent lack of updates… the challenges we face are consuming every moment, and every breath.  Grayson was admitted Tuesday with symptoms of vomiting, pain, and dehydration.  His symptoms were so severe, an emergency CT was done in ER before his admission to rule out any acute, or catastrophic incident.  The CT ruled out evidence of an acute episode occurring…huge sigh of relief.  We were admitted to receive our MRI a day earlier to get a better indication of why he is so symptomatic, to receive fluids, and treat symptoms.  Wednesday morning in the hospital Grayson had two seizures within an hour.  He was given ativan to stop the seizures, and we are now on Keppra (an anti seizure medication) to control them.  The results, as expected, indicated increased tumor size…his tumor has almost doubled since our last MRI we had about a month ago.  We knew the tumor was growing, but we were not expecting at such a fast pace.  On the positive side, his CSF count was much lower than expected. He does have increased edema, inflammation, and ventricle swelling. The best way to treat Grayson’s symptoms are with steroids…so unfortunately, we are back on steroids…. which in Grayson’s case has undesirable affects on his physcie…to say the least.  He lost movement in his upper left side of his body due to his seizers, but seems to be regaining movement.  We were discharged Saturday, and have started a new oral form of chemo. We should know in a couple of weeks if the new meds are working….we will judge by CSF count, and future MRI results.   Although he cannot articulate his feelings, I know he is happy to be home.  As for Bella and Everett, they are once again adjusting with great strength to Grayson’s state, and are eager to help (in their own way) with his care and comfort. 

 

We are still fighting, and hope and pray he will once again overcome this setback.

 

ONE LOVE

 

 

July 17, 2008 July 17, 2008

Grayson was such a trooper (as always) today at the hospital.  He did not receive chemo today, due to Sunday’s incident, and inflammation.  His omaya was tapped for a CSF count.  Unfortunately, the numbers were not good.  His spinal fluid tumor cells have heavily increased since last week.  This indicates the intra-omaya chemo is probably not working anymore, and his tumor cells are getting smarter, and resistant to this therapy.  We will not continue at this time his intra-omaya treatment.  We will start two new chemotherapy drugs to be given orally at home.  We were unable to get an MRI this week, but have one scheduled for next Thursday the 24th…we know from the CT it appears his tumor is growing, but at what pace and to what extent it is hard to identify until our MRI results.  He is happy, and playing, but is complaining of headaches.  Everytime he says “och”, and holds his head, it is like a knife in my heart knowing the underlying cause….if only I could just “kiss it and make it better”…

Bella is starting to have a difficult time with Grayson’s illness… I am seeing a change in her.  We are trying to give both Bella and Everett extra support…it is becomming very tough on them…they are so strong.

We will keep you posted on MRI results.

ONE LOVE

I

July 14, 2008 July 14, 2008

After an amazing week, Sunday morning Grayson began vomiting and became very lethargic.  Shortly after, he had a siezure…one that lasted  nearly 30 minutes.  The car ride to ER was terrifying as he continued his siezer.  We were seen immediately, and he was given medication to stop his siezure.  We had an emergency brain CT scan, which showed increased tumor size, edema and inflammation.  A dose of steroids was given to reduce inflammation, and we were sent home with instructions to return first thing Monday morning (today).  We are home once again, and will most likely begin anti-siezure medication on a regular basis.  We are trying to get a brain MRI to get a better indication of the underlying cause, and tumor growth.  I will write more tomorrow, as I am very tired…I slept in his  room all night fearing he would have another siezure.  He seems happy now… we are thankful for that.

ONE LOVE

July 12, 2008 July 12, 2008

I apologize for not doing an update sooner.  It brings me great delight to report we had an amazing week.  Grayson is doing so well. He is once again walking, playing, interacting, and even throwing a few normal terrible two tantrums…a delight for us to see.  I have been so busy playing with him all week, I forgot to include you all in the good news.  He had chemo on Thursday…did very well, and we will start a few new meds. this week.  His CSF results are stable…no increased tumor cells.  He is off of his methadone…yeah!, and almost completely weaned from the steroids.

I did all the normal things in life I used to take for granted…went to the market, drove all my kids around together in the minivan, with only one day in the hospital.  

Everett had his first day of school this week..it was a little hard not being able to send Grayson with him, but he transitioned very well, and is happy to be going to “school”.  Bella is getting excited to start Curtis in the fall, and has been playing dress up in her new uniforms.  

We will have a brain MRI the week of the 21st, and I will keep you posted on results.  Life is so sweet having Grayson “back”…all my children playing together again…

ONE LOVE

July 4th, 2008 July 4, 2008

Unfortunately, Grayson woke up again today with a fever.  We were hoping with all our hearts to have our family home for a Fourth of July Celebration.  Despite Grayson’s fever, he was in great spirits today.  We have been in isolation due to Grayson’s fever and cough (which in the hospital world can be a good thing)…we have had a room to ourselves all week.  This morning I set up a blanket on the floor with toys, and we played all morning together.  He was laughing, talking, and giggling all morning.  Although my heart aches for our family to be together, the joy I felt with him this morning will carry me through the tough times.  He is doing so much better…I finally feel I have my Grayson back!  We are down to 1mg of steroids a day, and .3 of methadone 2x a day….this is making such a difference in his personality.  

It has been a year since Grayson’s diagnosis…he was diagnosed on July 7th, 2007.  Many children with AT/RT do not live this long after diagnosis.  I feel blessed to have experienced so many wonderful and rewarding times with his presence throughout this year.  Every day with him is cherished beyond words.  We look forward to having him home soon, and our family together once again.  Grayson’s strength, courage, and perseverance continues to amaze me…the lessens he teaches us are priceless.  Please hold your children tight tonight, and have a Happy and safe holiday!

ONE LOVE

July 3rd, 2008 July 3, 2008

Grayson had another fever this morning, which means we will not be discharged  today.  His hemoglobin is also low, and he will need a blood transfusion today.  We met with PT to discuss and work with Grayson on his walking.  Although he is becoming more responsive emotionally, physically he is not walking, standing, or sitting without support.  Chemo was put on hold for the week due to low counts, and we will not tap the omaya for CSF results until next week.

Our oncologist came from a pediatric brain tumor conference,  which apparently had some new ideas about AT/RT.  We look forward to hearing these ideas.

I wish you all a Happy 4th!

ONE LOVE