Updates on AVERY. (good news update pg 33 post 489!)

[antmaril]

Great news :goodvibes

Best wishes to all of you.

[TruBlu]

My DS (Cameron) was asking about Avery last night. How is he doing? He's been on my mind a lot as we are preparing for Cam to go to Kindergarten in a few weeks. Hope all is well! :goodvibes

[NHAnn]

Avery is doing great these days! We are so blessed. We spent some time with them Sunday afternoon. He goes to the hospital on a day trip monthly now for chemo thru his port and has oral meds daily at home. But the dosages and side effects are much less intense than the prior phase. He will have spinal taps w/chemo every three months. This "maintenance" phase will take 2 + years. He is fnished with PT and OT. It is such a joy to see him running and playing with his listtle sisters. His hair is growing back. He's a remarkable little boy, the whole family is remarkable truly. He just recently started back to "school" (a MOntessori pre-school) a couple of mornings a week. A bit of an adjustment as he has not been since last Thanksgiving, but it's going well. They have decided to keep him there for kindergarten in September, rather than go to the public kindergarten. The scheduling logistics work better for their needs (public K is 5 days a week for 1/2 day, at his school it is 2 or 3 full days. I will try to get some pics posted here for you all soon!

[Mickeyfaniam]

Truely wonderful news Ann! :hug:

[TruBlu]

Truly an answered prayer. We are so happy for you all! :grouphug:

[NHAnn]

AVery's white blood counts have dropped too low the last couple of weeks (after being "too high" :confused3 for a couple of weeks). So although he still feels great and is in wonderful spirits, he is at risk for infection so on "house arrest"...no school or public places...they suspended all the chemo meds for the time being. DIL is "bleaching and Purell-ing" everything in sight!

We are hoping and praying the counts will recover in time to go forward with his big plans for a 6th birthday party at the end of the month!!

[KPeveler]

hugs and prayers coming your way - hope everything is okay!

[NHAnn]

Counts were back on the low end of optimal range today, that's a good sign. :thumbsup2 Today was at 570 on the Absolute Neutrofil Count, optimal is 500-1500. Last draw he was 34 :scared1: So he was able to resume his chemo today. :goodvibes

[Mackey Mouse]

Oh Ann.......he is doing a great job battling.. hugs and he is in my prayers..

[FSUDisneyGirl]

I just read this entire thread...all tonight!

Just wanted to say I am so happy that he is doing so much better than last year! Avery and his family :cloud9: are in my prayers as well!

[NHAnn]

aw, thank you Erin!
Avery celebrated his 6th birthday last week!! :cool1:
There were some dark days last winter when we feared there would not be another birthday. But hope and strength prevailed. He's doing really well though treatment will continue another couple of years.

[NHAnn]

TruBlu...saw your post on Avery's Caringbridge site :thumbsup2 Thanks for your support!!

Avery's blood counts were just right on this week!! :cheer2: Not too high and not too low!!


Happy Halloween to all!

[TruBlu]

TruBlu...saw your post on Avery's Caringbridge site :thumbsup2 Thanks for your support!!

Avery's blood counts were just right on this week!! :cheer2: Not too high and not too low!!


Happy Halloween to all!Since my entire family has been stalking the little guy for a year now, I thought I'd post something. :goodvibes He really is looking great! What an amazing little man! :goodvibes

[NHAnn]

Hopefully just a bump in the road...Avery's spinal tap this week (he has them every 3 months) showed a couple of cells that shouldn't be there. Not nearly enough to indicate relapse, and they say it could be "nothing"-- like a funky sample or something. They will draw again in one month. We will stay busy, enjoy the holidays and not "bleed before we're shot" but cranking up the prayers that it is "nothing"...

[JunieJay]

I absolutely will keep Avery in my prayers, Ann. I'm sure its nothing, just a fluke. :grouphug:

[NHAnn]

ALL CLEAR on Avery's spinal tap today!! :thumbsup2 SO we stay on track with his current treatment, no relapse, we are so happy and grateful!!

[mommasita]

ALL CLEAR on Avery's spinal tap today!! :thumbsup2 SO we stay on track with his current treatment, no relapse, we are so happy and grateful!!

Thank God :woohoo: :woohoo: :woohoo: :banana: :banana: :banana:

[KPeveler]

WONDERFUL!!!!!!!

Hugs and prayers all around!!!! :cool1: :thumbsup2 :cool1: :grouphug:

[NHAnn]

It has been many months since I updated here...I apologize....lots going on in life....

but am happy to report with Avery the news continues to be generally very positive. He turned 7 yesterday, and at Thanksgiving we'll be at the 2 year mark since diagnosis. If all goes well he has 16 months left of treatment.
He continues on oral meds daily, inlcuding a monthly dose of steroids that make him (as his mom says) "a little boy with PMS" ;) -mood swings, food cravings etc for a few days. He has bi-weekly blood draws and bi-monthly spinal taps. His blood counts fluctuate, they tinker with dosages, it fluctuates some more. A roller coaster still-- but the hills are shorter, the drops less steep, and the curves are not as sharp as the first year.
He started first grade a month ago, and is playing soccer.

He's also turning into quite the dynamic little public speaker, has talked to large groups at fundraisers for CHaD (Children's Hospital at Dartmouth) and cancer awareness type events. This is very interesting, as before his illness he was very reserved.

He had a Make A Wish trip to Orlando in June, we were able to join them for a few days of it....an amazing time....
the best for me was at Star Wars weekend at HS, he was chosen for the Jedi training ...it was very moving and symbolic for me to see him on the stage battling Darth Vader :thumbsup2

Thank you all for your continued prayers and support!! :hug:

[TruBlu]

FANTASTIC update, Ann. :woohoo:

We were at Disney this past June, too. Too bad Cameron and Avery didn't run into each other. Cam would have loved to have met his hero in person. :goodvibes

[safetymom]

Thanks for the update. I am glad to hear the positive news.

[antmaril]

Wonderful news! Very glad to hear it!

[pumba]

Ann I always come and see what is up with Avery ......this is great news to hear......Thanks for updating us

[Towncrier]

It's great to hear from you, especially with such wonderful news. I have been following Avery's progress on caringbridge.com and have kept him at the top of my prayer list. You've got quite a grandson there.

[wuv tigger]

thanks for the update.:lovestruc

Are you able to post the caringbridge addy?

[NHAnn]

My goodness, I have been remiss in updating this thread, I cannot believe it's been more than a year.

The last month has been a real roller coaster for me...I lost my father :sad1: Although he was 86 and had been battling early stage Alzheimer's it was quite sudden/unexpected.

but I am VERY happy to post the following regarding Avery....

and express my thanks (and on behalf of Avery too) for all the prayers and support shown by my DIS friends

Avery is CANCER FREE!

After almost four years, Avery has finally finished his chemotherapy and other treatments, and now is considered cancer free. While we could never repay all of you for the kindness, support and love that you have shown us during this time, we would really love to share in a celebration of thanks with all of you.

Please join us on March 19th, at Pat's Peak at 5:00 p.m., for a special Celebration of Thanks! We will have music, dancing, cake, and lots of family fun, celebrating this new journey we are now on, and to try and express our thanks and gratefulness to each of you for all you have meant to us.

There have been many people who have shared in our journey, many of whom we have never met...please spread the word that ALL are invited. If you have friends who have been part of our journey, encourage them to come! If for some reason, either you or someone you know, is unable to attend in person, we will have a special message board to post letters, cards or emails, if anyone would like to send them ahead of time. You can mail things for the message board to 341 Plummer Hill Rd, Henniker, NH 03242, or email at forrestallb@yahoo.com

What can you bring? If you'd like to, we'd love some help with snacks and desserts! If your last name starts with A-M, you could bring a munchie or appetizer, and if your last name starts with N-Z, you could bring a dessert. If you have your heart set on bringing something specific just let us know when you RSVP- we won't hold you to your letter! The restaurant at Pat's Peak, as well as the cash bar, will be open for anyone who would like to purchase meals or drinks during the party.

What else do you need to know? Nazzy, the popular DJ from WJYY in Concord, will be mc'ing this great event, so you can bet that he and Avery have some fun contests, games and mischief cooked up! Be ready for fun!

During his treatment, Avery has become a big supporter of CHaD, and has really taken this time to give back, in thanks for all CHaD has done for us. To support the Children's Hospital at Dartmouth (CHaD) and Kristen's Gift (a nonprofit charity that provides support to the pediatric oncology department at CHaD) consider creating a snowboard or ski "team", and raising money for CHaD! During the day of March 19th, Pat's Peak will be hosting a special fundraiser in celebration of Avery's journey. For more information on this special event, or to create or donate to a team, visit www.skiforkristen.org

Please RSVP to our special family fun night, a celebration of thanks! We hope to see you there, to say THANK YOU for ALL YOU HAVE DONE!!! We could never have done this without you!

[Jake & Crew]

Just checking in after a year and so happy to see your wonderful post! Hope you had a terrific celebration....I'm sure it was lots of :yay: and :grouphug:
I am celebrating with you in spirit.......Go AVERY!!!!

[j's m]

Wow, just saw your latest update and it brought tears to my eyes. I am so happy for Avery and your family. May he continue to be cancer free and now live a healthy life.

Sorry about your father.

[Dan Murphy]

Wonderful news on Avery, Ann. Condolences to you and family on dad. :hug:

[MerryPoppins]

Sorry to hear about your dad, but thrilled to hear about Avery. What a blessing.

[NHAnn]

Well, after 18+ months of remission, I'm sad to report that Avery's leukemia has returned. We'll know more in the next few days as to whether it originates in blood, nervous system, or bone marrow....prognosis is much better on the first two....we shall see.

They have a CaringBridge.org site.....if you go to that site it gives you the option to enter a name for an individual's page/site...it is: averyforrestall if you want to see the whole journey, updates and the guestbook.

Thanks to all the DISers who are so generous with prayers and support! :hug:

[Dan Murphy]

Good wishes and prayers again for little Avery, Ann. He beat it once, he'll do it again. :hug:'s

[quasar4legs]

Well, after 18+ months of remission, I'm sad to report that Avery's leukemia has returned. We'll know more in the next few days as to whether it originates in blood, nervous system, or bone marrow....prognosis is much better on the first two....we shall see.

They have a CaringBridge.org site.....if you go to that site it gives you the option to enter a name for an individual's page/site...it is: averyforrestall if you want to see the whole journey, updates and the guestbook.

Thanks to all the DISers who are so generous with prayers and support! :hug:

I am so sorry that Avery is facing this battle again.

Your family is in my thoughts:grouphug:

Quasar

[Pinnie]

Stormin the heavens with prayers for Avery and his family.

pinnie

[luvmarypoppins]

:hug:Prayers for your precious grandson.

[marymargaret22]

Praying for your whole family.

[Deesknee]

renewed prayers for Avery & all of you.

[Schmeck]

If the family is interested, Lucy's Love Bus gives grant money to support alternative therapies to provide comfort and relief to children undergoing cancer treatment. From your posts, it sounds like you are in the general area that the Love Bus covers.

http://www.lucyslovebus.org/

My thoughts and prayers are with Avery and his entire family!

[snappy]

Per a post on caringbridge, it is not in the bone marrow, praise the Lord!

[Schmeck]

snappy, thank you for letting us know! :lovestruc

[j's m]

Ann, more prayers coming Avery's way. :grouphug:

Snappy, thanks for your post in keeping us updated.

[MerryPoppins]

I just found out about Avery today. I'm so sorry, but thankful that the news is better than it could have been. Renewed prayers for the little friend I have never met face to face. But I hold him close in my heart.

[luvsmickeymouse]

I just read about the return of Avery's leukemia. I am sorry and I hope he is in remission very soon. I went over to caringbridge and posted there as well.

[TruBlu]

Hi Ann :wave:

I have been sick and away from The DIS boards for about 8 months. Today is the first day I've been on sice May. I am so sad to see this. I will definitely add sweet Avery to my prayer list again. :hug:

[luvmarypoppins]

Just read Averys recent caring bridge page.

He is on some heavy duty chemo and dealing with mouth sore issues too.

Such a brave young man and always has a great attitude.

My parayers are with him.:hug: