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

[NancyIL]

Ann - if the hospital ever asks your family to fill out an evaluation of the care that was received - you could strongly suggest that the urology resident consider being in "research" rather than "patient care"! :rolleyes:

I'm so glad to hear that Avery is holding his own and making some improvement almost daily! Continued prayers on his behalf.

[Dan Murphy]

Stopping by for updates, Ann. Sounds like a step at a time, making progress. :hug:

Continued good wishes and prayers, and the Blessings of the Christmastime to Avery, and all of you guys.

[NHAnn]

Good idea Nancy!

Marsha...because of the sheer volume of immediate family members, DH's ex and spouse, DIL's parents (and 1 grandparents still living)...DS and DIL's siblings (we have 4 other kids besides Avery's daddy, - 3 more stepchildren...each with a spouse or significant Other, and my DD) there are 6 more grandkids besides Avery...and the number of non-family members who have close personal relationships with DS and/or DIL...they decided that they just cannot "manage" the visitors aspect yet, even though technically it could be allowed on a very limited basis.

This morning was another roller coaster but things are settling after a few hours and some tests, to a continued positive direction.

:grouphug:

[TruBlu]

Ann,
Since the DIS will be down we wont be able to check in on Avery tonight, but the boys and I will still be praying!

Hopefully when Avery is all better they can meet at Disney and ride Splash Mountain together! :goodvibes

I hope you have a Merry Christmas!
Tracey

[Blueeyes101817]

Since the dis will be going down, wanted toc ome and post...your family is in my prayers through the holiday season!

[MerryPoppins]

I just wanted to check in before the boards go down. I'm still praying and thinking positive thoughts.

I've been wondering, how are Avery's sisters holding up? You said he has sisters, right? I bet it's hard for them, and even worse with the holidays. I'm thinking of them too.

Hang in there and we'll look forward to some good news when the boards return. :thumbsup2

[NHAnn]

Thank you all, very much....
and wishing you and yours a very special holiday weekend!!

[j's m]

Ann, more prayers and good wishes for Avery and the whole family. We'll continue to pray while the boards are down and hope for really good news when you can post again.

[Mackey Mouse]

Hugs to Avery and prayers of course.. even with the boards down, he is in my thoughts constantly.. little sweetie..

Merry Christmas to everyone here..

[Mackey Mouse]

Ann, please update when you can.. I have been thinking of Avery for days now, Christmas Eve mass I offered my intentions for him....and of course my husband and the rest of us who need prayers.

[NHAnn]

A quick update to tell you he is holding his own, still steady improvement in his numbers...I had the most wonderful Xmas "gift" and got to see him yesterday morning. :santa: :cloud9:

No time for details ...sorry...I am in between houses and computerless at the new house...insanely busy and tired...but happy

thank you for the Christams Miracle prayers I think they are working !

[Mackey Mouse]

Ann.. I am so glad you got to see him... we are keeping him in our prayers..

You take care of yourselves too.. Hugs

[snappy]

What a present, Ann.

I hope you are able to enjoy more time in your new house soon. I know you are looking forward to it, well that is an understatement.

This is not time to let up on prayers for Avery. I continue to have him and his family on my mind and in my prayers.

Thanks for posting about your visit.

[rie'smom]

Hugs and prayers to you Ann and to Avery and your whole family.

[Blueeyes101817]

Glad you got to see Avery!
You guys are still in my prayers

[NHAnn]

I typed out an update earlier...I don't know what happened to it :confused3

Avery's blood counts are continuing to be positive. He has had both chest tubes removed in t he last couple of days and he is "peeing" a lot of fluid so some of his overall swelling is lessening. But he is having a lot of discomfort from a lot of distention in his belly...gas basically. They have put a tube all the way down his throat to his belly to try to relieve this so that in itself in uncomfortable. But he is increasingly alert and communicative .
ALso he had a bone marrow aspiration today. The fact that they even felt they could do this is a good sign, as it has a potential risk of introducing infection ot the marrow which would be very very bad. But his numbers have so steadily moved inthe right direction these last few days, they decided they could do this....which means they are beginning to think about the next step in battling the leukemia if his immunity strengthens at the same rate .....which means they attack it and wipe it out again....scarey thought....but I am so in awe of the power of prayers and positive thoughts now....
hard to believe it's a month since diagnosis....:grouphug:

[Jake & Crew]

:hug: Ann

Been off the boards the past week, could not wait to get on and get to the last page.....missed what has happened since the 19th but am thrilled he is in such a positive position he can attack it so aggressively! ( Been aggressively attacking my own this week which why I have been off line, but think and pray for Avery often.)

The pain must killing all of you to watch, know how much you want to make it your own and take it away. Focus on the positive, he is so comforted by your love and we all will keep praying he gets as much comfort as possible. Most of all, we will keep focused on beating the monster forever so he can go back to be a little boy with a long, happy life!!

Stay strong, stay sane, laugh and love everyday!!! You are so needed by your family, you are so loved by your Dis family...we will keep praying for your strength!

[Mickeyfaniam]

checking in Ann.. sounding positive.....thats good
Continued hugs & prayers for you and the family

[Shellie722]

Glad to see some positive results here!!! Continues thoughts and prayers for Avery and your whole family, Ann.

[madaboutMickey]

Great to hear he is improving! Will continue to keep him and your family in my prayers.

[Saphire]

I am so in awe of the power of prayers and positive thoughts now....

Me too. :goodvibes Continued prayers for Avery. :)

[Mackey Mouse]

Came on tonight and had to check.....I am so glad to hear that the numbers are going in the right direction and he is so alert. God love him.. and I am still praying here.

Hugs to Avery and to NHAnn for keeping us in the loop here, I can only imagine how your life is upside down right now and yet you still make the time to let us know what is going on with Avery.

[pumba]

NHANN.......you and your family are never far from my thoughts even if I am not here.......Please know that I am praying and keeping those prayers going for Avery .......Just know they will be great.....

And Marsha......same goes for MY TOMMY........he has a special place in my heart that is reserved for him......

[NHAnn]

Marie!! :wave: I know you are with me in spirit and I appreciate it :hug:

Avery's white blood counts have continued to show very positive encouraging results and the yeast infection seems to be conquered. The last 36 hours or so though, he has been having fevers off and on. A lot of things cultured and scanned and analyzed today...they are not sure the source. I am thinking myself that this is the the result of the revived umune system reacting to all the tubes and meds and such. (That's my story and I'm stickin' to it!!!) Which they talked about a week or so ago (that once his WBC went up he'd be sicker when the WBCs attacked the infection(s) ----but now feel they need to scan this and culture that and talk about potential new infections :confused: Sigh
Also...Avery has always had allergies and sensitivities to "stuff" dust,pollen...had skin sensitivities like eczema...so can you imagine this little body reacting to chemo and then VERY strong antifungals and antibiotics and tubes everywhere?? Apparently today the place where the chest tube was removed was itchy and inflamed--and the little bugger stuck his figner right INTO the hole to scratch it...until they taped it all up with layers of plastic and gauze...good grief!! He totally grossed out his mom!! :rotfl2:
One very very good piece of news today was that the preliminary results of yesterdays' bone marrow aspiration showed no leukemic cells. This is preliminary and doesn't mean there are none there...it does mean though that in the last couple of weeks while battling the infections, the leukemia has been kept at bay by the steroids. And when he is able to resume chemo treatment for the leukemia, it will be at the "consolidation" phase rather than have to repeat or extend the "induction" phase he was in when he had the setback. :thumbsup2 :cheer2:
So we are all trying to keep up the prayers and psoitive thoughts for his continued progress!! Thanks!!!

[Mackey Mouse]

I loved reading that this morning..

Way to go Avery, keep up the good work.. we will keep up the praying and who knows we may just pray you right out of that hospital.

Hugs to you Ann....

[Mickeyfaniam]

more praying Ann :thumbsup2

and too funny about the scratching :goodvibes

[TruBlu]

Fantastic report Ann! Just reading it brought tears to my eyes. There is no stopping your little man!!!! I can't wait to read that he is home with his family.:goodvibes

Isn't the power of prayer amazing???:woohoo:

[NHAnn]

Avery had another quiet day...quiet is good, and more chocolate for the doctors! ;) is temp has fluctuated but not spiking as high as yesterday, a good thing too.
He actually had some PT today, work a little on those muscles as he has been in bed for three weeks straight now. He's complaining of some pain in his right shoulder, and also where they took out his chest tube on the left. But they are trying to ease up on narcotic painkillers, so as to let his digestive system work a little better, which would lessen the abdominal swelling and allow his lungs to expand better, which would hasten removal of the respirator..... and the hip bone's connected to the thigh bone and the thigh bone's connected to the knee bone, and so on and so forth :dance3:

Keeping those prayers and positive thoughts going:thumbsup2 !!

[Blueeyes101817]

prayers still being said for avery and your family!

[NHAnn]

We had a nice visit with Avery and DS and DIL this morning! He had been given some pain med while we were there but he did recognize us and apparently early in the day he had some wonderful really lucid "Avery" moments with his daddy before the days poking and prodding began. eE is such a trooper!

He is doing well tho still in ICU...things are much more quiet and boring...we like quiet and boring! :thumbsup2 Only 3 "tubes" remaining...the respirator one, the catheter and the PIC line.

THANK YOU again for the prayers and support!

[safetymom]

That is wonderful that you got to see him. I am thrilled that he continues to make progress. I still have you all in my prayers. Thank you for the updates.

[kejoda]

I can't tell you how happy I am to come here to see good news. You must be over the moon Ann.


As always continued prayers for you all.

[kathleena]

Hello neighbor

I've just read through this thread. Avery and your family have been through so much in a month, but I was happy to read that he is getting better from the infection. Many prayers for you and your family and little Avery coming over from Maine.

I am also praying for another leukemia patient, this one a young woman, just graduated from law school, who has both ALL and AML. Both she, and a grandson of my cousin who had cancer, set up a free website on Caring Bridge to help them keep in touch with loved ones and friends. Just including the link in case you would like to do so yourself.

http://www.caringbridge.org/

[Mackey Mouse]

Love these updates on Avery, always check to see how he is doing and heading to church now where I will offer prayers for him..

Hugs to Ann.. hang in there, you are all doing great.

[MerryPoppins]

Ann, I've been away all week, so I was anxious to get back to my computer and check on our little patient. Sounds like things are going well.

I was away all week at a youth retreat. I was the "mom" for a group of about 20 kids from 10th through the 12th grade. It was a really spiritual group and I told them about Avery. Several of them had tears in their eyes and they all wanted you to know that he'll be in their prayers. In fact, each group wrote a prayer to share and he was included in each one. It really touched them that he was so young and fighting so hard. We had a healing service and I had them lay hands on me in Avery's name. I hope that is okay with you.

One cool thing was that we had a girl that didn't particularly want to be there. Here parents were worried about her lack of concern with her grades and possibly the crowd she was running with. Avery's story obviously touched her deeply. She wanted to know if she could talk to a group of ladies at her church who pray while they sew prayer blankets and then they send the blanket to the person they were praying for. When we went home she was talking to me about trying harder to get along with her parents. I really think talking about Avery made her look at her own life. See how bad situations can have positive results?

[NHAnn]

Merry...that is truly touching and do not mind at all :hug:

Today DH and I took care of Avery's two little sisters, while DIL's mom went home for the day to Massachusetts. We had a good day and the girls are doing well despite missing their parents and big brother.

Avery's issues today center around concern about his GI system...it is just not resuming it''s function the way it was expected to with the other progress he's made. They are concerned about possible abdominal infection outside the GI tract and considering ways to approach or test for this.

:grouphug:

[Belle1997]

I am so glad to here the positive news on Avery. Wow. Poor kid and family but great news he is beating the odds and doing well. Prayers still coming for this long journey.

Guess you better get a new load of chocolate these doctors are doing a great job :)

[Mackey Mouse]

Just checking in here on our little buddy, Avery, read Ann's report. So now more prayers for healing that GI area and more prayers for no more infection..

Hugs all around..

[Dan Murphy]

Here we are, Ann, a new year, a new light, Avery's year to be well again. Continued prayers and good wishes for Avery.

And good wishes and prayers for your concerns there too, kathleena.

[Blueeyes101817]

I always come and check updates every morning..I told my family about Avery and we all are praying

[NHAnn]

A full CT scan today showed very large pockets of "abcesses" throughout the left side of Avery's torso. They feel the revitalized white blood cells are attacking this and this is the cause of his discomfort as well as fevers and rashes. They aslo feel this is the "original" infection :confused3
ANd now...dilemmas/debates on what to do. They did do a procedure to insert a drain to analyze the fluid..if it is mainly sterile fluid (with the white blood cells having done their thing) the body can reabsorb the fluid onits own over the next few weeks. Problem with that is it further delays resuming chemo for the leukemia. More invasive surgery to remove any infected tissue is another tactic that might be considered, which of course has it's own risks...I will update as things unfold.

We are trying to focus on this as another challenge to be overcome, another bump in the road on this journey to recovery that we are determined to complete. :grouphug:

[Pea-n-Me]

:grouphug:

[Saphire]

Praying for wisdom and guidance for those doctors as they decide what the best approach is for that infection. :grouphug:

[MerryPoppins]

More prayers headed your way. May the doctors use the best judgement in their decisions. After all, they have tons of prayers going up that God will steer them in the right direction.

[Mickeyfaniam]

:grouphug:

[Mackey Mouse]

Morning all and prayers for Avery as always.. take care Ann and family and hopefully we can pray him through whatever he needs to get healthy again..

Hugs to all..

[snappy]

I just saw the news about the abcesses. Praying hard for Avery.

Laurie

[DISNEYLOVER70]

Prayers and :grouphug: for Avery, you and your family.

[NHAnn]

Avery's in surgery this afternoon to get at those abcesses.

Our local paper had a story about him this morning!

http://www.concordmonitor.com/apps/pbcs.dll/article?AID=/20070102/REPOSITORY/701020361

[Mackey Mouse]

Just got back from chemo with Tom and came here to read about Avery..

I hope all goes well on the surgeries and they get those damn abscesses..

Hugs to you Ann and to your family... I am praying..

[Teacher03]

:grouphug: and prayers for Avery. You are also in our prayers.

[Blueeyes101817]

:grouphug: and prayers

[NHAnn]

Surgery went very well!! :thumbsup2 I think our boy will meet this challenge with the same success as the past ones...with all the love and support and prayers surrounding him!! :grouphug:

[Mackey Mouse]

I am so glad it went well Ann... Bravo to you Avery.. you show those doctors how tough you are and beat this thing..

Of course, more prayers... and hugs!!!!

[MerryPoppins]

I'm so glad! We went out to the movies and dinner and Avery was constantly in my thoughts. I came to the boards the first thing when we got home. What fantastic news! Those doctors seem to know what they are doing. Give them some chocolate. ;)

[TruBlu]

Ann,
I just read the article and I'm typing thru tears! His picture was just so cute! It is really heartbreaking to think of him so sick. We are still praying here. I'm very happy to hear that the surgery went well.
:grouphug:
Tracey

[Mickeyfaniam]

Just read the article Ann and I too, am typing through tears.
But so happy to read the surgery went well! continued hugs & prayers .....

[snappy]

That article was amazing, very touching. Thanks for posting it, Ann.

[gemjoy]

:grouphug: just popping in to send more prayers!!! :grouphug:

[annrae]

I read the article Ann and it was so very touching. Very happy to hear that Avery did so well with the surgical procedure he underwent over the weekend. Hopefully, everything is going to be uphill now. Try to rest and enjoy yourself at WDW Ann. Hugs Barbara

[MerryPoppins]

I just stopped by to check on our boy. I guess no news is good news. Hope he is recovering from the surgery and feeling better every day.

[fan of the TTA]

i do hope everything goes well.

you have my thaughts

[Mackey Mouse]

Checking on Avery... hope is doing well and more prayers coming his way..

Hugs to you Ann, stay strong.

[Jake & Crew]

Ann just a quick :hug:

Been off for a while, but am back in full force. Prayed for Avery often.

Did not even know about the surgery until tonight, but had very peaceful positive thoughts whenever I was praying for Avery so I know in the big picture he is doing great,even if it feels like 1 step forward 2 steps back, I know he headed in the right direction. Hope the surgery relieved HUGE amounts of pain, no child should feel such agonies.

Will continue positive thinking and praying for all of you!:thumbsup2

Great article what an inspiration he is to so many.

How is the fundraising going?

[MerryPoppins]

Just letting you know that Avery (and the family) remain in my frequent thoughts and prayers. We never heard from you today, but again I guess that no news is good news. Lots of hugs and positive thoughts. :hug:

[Mackey Mouse]

Hope Avery had a peaceful night and is meeting this morning in good spirits and not any pain, that is my prayer every day...

Let us know when you can Ann.. hugs.

[j's m]

Ann, just letting you know that I've been thinking of Avery and your family, and praying for his recovery. I read the newspaper article, a definite tear jerker but a wonderful view into a precious boy and his family. Please update us with some good news.

[snappy]

Hope our not hearing from you means BOTH that Avery is more than holding his own AND that you are having an outstanding trip, Ann.

Remember me to the mouse, please.

[Hanover]

This family's strength is phenominal.

We are praying and keeping the entire family in our thoughts.

[Towncrier]

The family has a website for Avery that you can get a link to from Ann if you send her a PM. If you sign his guestbook, you can opt to receive emails whenever his journal is updated.

Continued prayers for Avery and for the entire family as well as for his caregivers.

[NHAnn]

I have had computer problems today, but seem to be back up and running.

Avery continues to hold his own, and all the prayers and positive thoughts continue to aide him and support his family. He was able to resume some chemo treatments and today was a good "quiet" day.

I did not post the link to Caringbridge earlier out of repect for his immedate family's personal privacy (his parents had asked that I not give any of their personal data on this large public site)...several of you have sent things for him, via me, and many of you have sent prayers and good wishes, and many of you been such personal support to me...I cannot express how deeply we appreciate it all. And I hope I did not offend any of you by not sharing that site earlier. In any event, since the newspaper article, it is all very public out there anyway . DSS and DIL are getting calls and e-mails from their former high school and college classmates.

thanks!!

[snappy]

Good news, Ann.

I really love reading Avery's story. Your son and daughter are two awesome people, two awesome parents.

Reflects well on you and your DH.

Hope you all are having a bit of fun this week.

Thinking of you all.

[NHAnn]

Your son and daughter are two awesome people, two awesome parents.

Reflects well on you and your DH.


Well, I can't take a lot of credit on DS...he is actually my stepson and DH and I married when he was in his late teens ;) But the apple doesn't fall far from t he tree, for sure :goodvibes and DIL...I just adore her.

Avery is holding his own these days....he is an amazing fighter for sure.

[Belle1997]

checking on the updates. Glad to hear Avery is holding his own. What a little fighter he is. But the way I would love to read the article. Can you pm me with it. I did not find the link in these post. Thanks.

And thank you for keeping us informed on Avery I know I really care and hope and pray for his continue recovery and health.

[Jake & Crew]

Ann

No offense taken, please do not even go there. Our prayers, thoughts, positive energy are for all of you, most of all Avery. There is no Emily Post in the world of cancer, just love and support.

Praying for Avery to sleep well tonight. Hopepfully the Pats kept his spirits up today.

:grouphug:

[Mackey Mouse]

Hoping Avery had a good night and enjoyed the game with his Dad... I hope.

Take care of one another.. and more prayers..

[Blueeyes101817]

Hope Avery is having a good day today!

[TruBlu]

Just checking-in. Hope each day is getting better and better for little Avery!:goodvibes

[NHAnn]

Hello...back on after a couple days of computer issues. again...
Thanking you all for continued prayers....Avery had chemo the other day and his white blood count has dropped again ....and there seems to be some disagreement on t e medical team as to whether this is attributable to the chemo or not...but we shall see, and we continue to stand by Avery in this battle!! He is such a champ!

[Jake & Crew]

:hug: , he is a champ.......this is the worst roller coaster in the world......more prayers and positives Avery's way.

Does his hospital ever consult with Dana Farber or Childrens???

[Mackey Mouse]

I would think that it was related to the chemo, but then again I am a lay person..

Tom's platelets are low, that is due to chemo, as far as I know. I sometimes wonder if they truly know how debilitating this chemo is.

Ok.. enough of that, praying for the little guy and hoping he is doing well today..

[Belle1997]

Thanks for the update. Avery is still in my prayers. What a little trouper. Praying for strength for the family.

[TruBlu]

Ann,
I hope you are all doing well today. Avery is constantly in my thoughts and prayers. My boys and I check for an update every night before bedtime prayers and always say special prayers for him.

I hope you are all taking care of yourselves so that you will be stronger for him!

How is the new house? Are you completely moved in yet?

[NHAnn]

Jake-no consults that I am aware of at this point:confused3
Trublu- we are hoping to be actually living there within 10 days. Keep your fingers crossed!
Marsha-there are so many times his parents and the rest of us predict or speculate accurately about the ripple effects of all these treatmetns and procedures and side effects....the different specialities (radiology, oncology, infectious disease....all seem to want to sort of fingerpoint at others or claim ignorance on the negatives and self-congratulate ont he positive. But enough of that, as you say, I'm convinced it is Avery himself and his army of warriors and pray-ers that are getting him through this and will bring him out to victory at some point!!!

If you can, at 3 PM today.....send a prayer and/or positive energy/thoughts for Avery....

He's having a spinal tap IF they are successful again like last week in finding a safe entry point amidst the swelling. They will inject chemo at the same time. This would prevent (or at least put off) the need for an ommaya port (which basically is permanent hole in his skull). Last week it (the spinal entry worked.successfully..DSS asked for focused prayers at 3 when Avery goes down to surgery.

thank you my friends!!!

[safetymom]

Prayers will be said at 3. I hope everything goes well.

[Saphire]

If you can, at 3 PM today.....send a prayer and/or positive energy/thoughts for Avery....


Absolutely. I will lift him up in prayer this afternoon, especially at 3:00. :)

[TruBlu]

We'll be praying here, too. I just called my Mom, and she and my boys will be praying for our sweet little friend!!!

[TruBlu]

We're praying. Let us know how it goes.:grouphug:

[Mickeyfaniam]

hugs & prayers continued Ann.....

[Mackey Mouse]

How did the little guy do?? I hope ok, I hate the sounds of the port in his head, but I know they do this.....Tom had one in his clavicle went into the main vein in the heart for his chemo first time around.

I hope he can manage without it... God love him.. praying for him and you Ann and the family... Please let us know how he is..

[TruBlu]

I hope Avery is doing well today. How did it go yesterday?

Cameron (DS5) asked about him first thing this morning. We call him our hero!

[NHAnn]

Hi friends....
Well they were not able to give Avery his chemo yesterday, they did not have enough safe clearance for the spinal. But the port is still on hold until at least Monday, so things could change by then. MEanwhile, today he is having surgical procedures to remove a couple of drains and biopsy some bumps on his legs. He breating tube will come out today or tomorrow they say.

Meanwhile.....in this Epic called Avery's Anatomy, we had a little episode which we will call Grammie's Great Adventure: Yesterday I started feeling an odd pressure/pulling sensation in my right chest, intensified when I tried to take a deep breathe- about 20 minutes before quitting time, I got a little panicky when it didn't pass. When I got home I just knew something was wrong, called my doctor, they directed me to the hospital's satellite Urgent Walk-in center . DH drove me, DD met us there.

They started all kinds of tests/blood work to rule out heart attack, pulmonary embolism (clot) and stuff. Of assitional concern is the clinical trial medication I am on has potential vascular type side effects. I ended up being transported by ambulance (that was a first!) to the regular ER because they don't have a CT scan at the walk in. Better to go via ambulance , they take you right in anyway!! Fnally the CT scan around 9 diagnosed a pneumothorax, they had missed it on the initial chest X Ray at the walk in care, but the ER doc and the cardiothoracic surgeon bothsaid it was easily missed. It is a partial collapse of the rt lung. . they put in a small more "comfortable" (yea right!) chest tube te purpose is to drain or inflate something something and get theings repaired. I went back to the hosp today to get another X Ray and YAY they took it out. (IT was more sore than it did before they put it in, but it's a differnt sensation! Got no sleep, my leftover Vicodins from 18 months ago apparently are stale or didn't get them started soon enough.

Usually these are caused by trauma of some sort but can occasionally happen spontaneously...yep that's me, Miss Spontanaeity??? Bleeeeehhhhhhh
Does give me renewed awe and inspiration at what Avery is handling........

[Mackey Mouse]

Oh Ann...

Yikes.

Hugs to you, I hope you asked the doctor for some more pain pills to have onhand.. just in case. I am glad they took the chest tube out today though. You never know, you never know what is around the corner..

No chemo for Tom either, his counts are not great, but you know what, it is what it is...when the counts are better, they can do chemo. I just want to go somewhere warm and escape..

Please take care of yourself and I am praying no port for Avery....hugs all around.

[safetymom]

Ann, you sure have had more than your fair share of medical emergencies. I will keep you both in my prayers.

[Jake & Crew]

Ann

This one is for you:hug:

Will be praying all weekend that Monday is a good day for the tap for Avery.

I know this is sensitive, but may be time for Boston, it is so close ......my neighbor would not be here today if his doctor from Hasbro (childrens in Providence) did not get him to Boston.

We so want to trust our docs, know they do the best they can but even mine said he would not be offended if I went to Boston for a consult as my case keeps defying the "natural course", he even said he would get me a referral, I am thinking of doing that but due to my last treatment can not be examined until Feb/Mar and the CT last month was good so will decide for sure on 1/24 when I go back to the oncologist.

Will pray for Averyand his parents!

[Mackey Mouse]

I forget what Ann told us was the hospital. If it is the Hitchcock one affiliated with Dartmouth that is a very good hospital too.

[NHAnn]

Yes, he is at CHaD (the Children's Hospital at Dartmouth), at the Dartmouth Hitchcock Medical Center in Hanover NH, it is a very highly regarded teaching hospital, generally on par with the Boston facilities. I am not even sure if he could even be taken to Boston at this point. I do think though, just from my own knowledge - with my mom and having grown up in the Boston suburbs, that the Boston facilities should be taken advantage of, for a consult at least. I just really haven't found it the right time to mention/ask/suggest to DS and DIL that it would be a good idea. :confused3

Avery had some surgery yesterday to remove a couple of tubes but then put in a couple more drainage tubes for the abcesses in his back/trunk area. Also they biopsied one of a few "bumps" on his leg....not sur ewhat that is all about. On the good news front, they should be taking out his breathing tube today. Lately I feel like just saying: "Can we just let him BE for a few days?? Let him rest, heal? " Quit poking and cutting and so forth, everything one team does causes a problem for another team, effects of one med does something else and another specialty comes in and addresses that and blames somethign off the wall.....
uuugghhh

I myself am feeling better this morning, had a very good night's sleep after none the night before!

[MerryPoppins]

Just wanted you to know that even when I don't post, I'm following Avery's progress. I get updates from the hospital now and I pray with renewed vigor each time I hear how things are going.

Hang in there. Kids are resilient. He's a fighter and he'll make it through all this just fine. I have faith. We may lose power with this horrible ice storm that we're experiencing, but nothing will stop my prayers!

[annrae]

Just wanted you to know that even when I don't post, I'm following Avery's progress. I get updates from the hospital now and I pray with renewed vigor each time I hear how things are going.

Hang in there. Kids are resilient. He's a fighter and he'll make it through all this just fine. I have faith. We may lose power with this horrible ice storm that we're experiencing, but nothing will stop my prayers!
I heard on the news today about the ice storm you are experiencing. I, myself, would much rather have a good old fashioned snow storm rather than the awful ice. We were without power for 14 days at one time in Upstate New York and it is amazing how many times I wanted to turn the lights on! Anything, just anything, is ok I guess relative to what Avery and Avery's family is going through at this time. It seems to be a vicious circle for them. As you say, children are resilient and Avery is definitely a fighter which sometimes is half the battle. Hugs to everyone Barbara

[kathleena]

Many hugs to Ann and Avery!!!!!!

Praying for a tap before Monday.........

[TruBlu]

What a strong little boy. Does he understand why they are doing all these things to him, or is he feeling too bad to care? It just breaks my heart.

I agree. I wish they would give him a couple of days to bounce back some.
:grouphug:

Still praying!

Hugs to you too Ann.:grouphug: I'm glad you are feeling a little better.

[Belle1997]

Wow hope you are feeling better NHAnn. That was just scary. My heart goes out for little Avery. Spinal taps are nasty I have had two and face another one in a week. Poor little guy feeling bad already and having all the needed procedures is just is awful. Glad to hear the breathing tube is coming out. Praying that no more complications arise. I read this every day and pray for God's grace to your whole family through this. Thanks for keeping us updated.

[Mackey Mouse]

God love him, he has been through so much..

Well, heading to church and he will be on my prayer list, you too Ann, please take care of yourself.

I do hear about the poking and proding....sweet baby...I am sure they are doing what is the very best in care for him.. Maybe a consult if you can get him stable, but I have learned with daughters and sons, sometimes you have to wait for that best time....I hear ya Ann..

Hope you have a restful day today and that Avery does well also..

[NHAnn]

Avery's breathing tube was taken out this morning and he is doing great breathing on his own, no difficulty w/the transition!
His mom and dad had a nice morning, he sat and played a video game with them even, and they were so happy to see HIS smiling face without the tubes!! :yay:

[Blueeyes101817]

Avery's breathing tube was taken out this morning and he is doing great breathing on his own, no difficulty w/the transition!
His mom and dad had a nice morning, he sat and played a video game with them even, and they were so happy to see HIS smiling face without the tubes!! :yay:

thats great news!

[MerryPoppins]

Awww, that's wonderful news. Sounds like a great day for all of them.

[Jake & Crew]

Love the good days, will just keep praying Avery gets more and more of them!

Understand you are in a tricky spot about the consult question, will pray for that too.

:)

[Belle1997]

Oh great news. A happy milestone :yay:

[Mackey Mouse]

Woohoo.. way to go Avery... I can only imagine what a relief it is for the parents, grandparents and of course Avery to get that tube out..

Keeping him in my prayers.. :)

[NHAnn]

:banana: Today, the catheter came out....and now just a couple of drainage tubes for what's left of abcessed areas in his back! They NOW plan to give him a few days to rest, and restart chemo Thursday. Because he is less sedated and less narcotic meds with the breathing tube out, he is really "with it" for the first time in a month. This is causing him some anxiety, all these docs and nurses and techs who "know him" after caring for his the last month have been coming in to say hi to the alert Avery and he's a little overwhelmed. Also he is having some nausea due to getting off the narcotics but it is hoped that the nausea will abate and his emotions will smooth out as well.

[Dan Murphy]

Some good updates there, Ann, great news. Little steps of progress add up to big steps. Continued prayers. :hug:'s

[Mackey Mouse]

Lots of hugs and prayers for a peaceful night for Avery without nausea....he is doing so good.. Bravo to him.

Hugs Ann.. thanks for keeping us updated.... more prayers coming his way.

[kathleena]

Many prayers to little Avery for a restful night.

[TruBlu]

More steps in the right direction!!! Way to go Avery!!!:cheer2:

[Mickeyfaniam]

some good news Ann :)
continued prayers ......

[Saphire]

I am so pleased to hear about the daily progress Avery is making, and will continue to pray for this special little boy. :)

[lyeag]

Any news today?? I haven't posted, but I have been keeping up and keeping up with the prayers.

[TruBlu]

I'm hoping that no news is GOOD NEWS!:goodvibes

[NHAnn]

Wonderful news today....
Avery had his last 2 drainage tubes removed, and had his spinal chemo today.
They are talking about moving him to the regular pediatric floor if the next couple of days go well with reaction to the chemo.
We are hoping and praying that his little body and his strong spirit and the support of prayers will keep him on the road to recovery, that his immune system can withstand each chemo dose until he is home and healthy!!

[Jake & Crew]

Just said a prayer for HOME AND HEALTHY!!!

Good steps forward Ann, lots of people and prayers are behind Avery and your family every step of this journey.

LOVE the good news days.....

:hug:

[Mackey Mouse]

Oh.. way to go Avery... I do hope that he tolerates the chemo well, it is difficult to do. So glad the tubes are coming out and he can be on a pedi ward with other children.....just knowing there are others around you can be uplifting..

Take care Ann....still praying. hugs to Avery.

[TruBlu]

Praying for HOME AND HEALTHY here too!!! (Actually, I'm praying for Avery to be able to tell his GRANDKIDS about this experience!!!:goodvibes )

[j's m]

Glad to hear some good news about Avery. The prayers will continue, give him a hug when you next see him.

[NHAnn]

:cheer2: :woohoo: :dance3:

Avery has been moved out of ICU and onto the regular pediatric floor!!!

I've been crying happy grateful tears all day!!

We hope to visit this weekend!!

[Pea-n-Me]

Wonderful news, Ann. :hug:

[lyeag]

Way to go Avery!!! What wonderful news. I hope he gets a good night's rest and an even better day tomorrow!:cheer2:

[Saphire]

:cheer2: :woohoo: :dance3:

Avery has been moved out of ICU and onto the regular pediatric floor!!!



Wonderful! :goodvibes Just wonderful. :goodvibes

[Mackey Mouse]

Woohoo for Avery..:banana: :yay: :cheer2:

That is just the best news for him and the family. Enjoy your day today with smiles, wind too and sunshine.. Hugs.

[Belle1997]

Yeah :cheer2: Avery you go kid what a fighter. :grouphug:

So glad to hear he is doing so much better. God's little miracle :)

What a long way he has come and fought back against the odds. The power of prayer is just so amazing. Though I have never met you or Avery my heart just goes out to him and his family. I will keep praying for a full recovery :)

[Blueeyes101817]

great news!!

[TruBlu]

:cheer2: :woohoo: :dance3:

Avery has been moved out of ICU and onto the regular pediatric floor!!!

When I told my boys they both let out really loud whoops of joy, jumped up, started dancing, and did a big high five! You would have thought we won the lottery!:rotfl:

[Mackey Mouse]

Heading to church in a bit, Avery will be on my prayer list there too.. Hope yesterday worked out great and the sun is shining this morning for our little buddy..

[Jake & Crew]

:cheer2: :cheer2: :cheer2:

Three cheers for the champ!!! Who cares if the Colts are going to the Super Bowl......Avery going to the floor is SO MUCH BETTTER!!!!!!

Continued prayers and :hug:

[Mackey Mouse]

How is Avery doing today.. hope he is enjoying his new digs and meeting other children when he is well enough..

I watched this special on Danny Thomas' St. Jude Hospital the other night and all I could think of was Avery.. and I was weeping and praying...

[NHAnn]

My little guy is doing pretty well, they straightened out a snafu with weaning him off his narcotics and he's better today than over the weekend. He has gone for wheelchair and wagon rides and even short walks. His sisters visited him today, they were able to share hugs and kisses for the first time in 6 weeks... and 3 yr old Delaney told him he looked cute with no hair :laughing:
Another spinal tap will be Thursday and they are alreadydiscussing type/dose for chemo, his numbers look good after last weeks, so :thumbsup2

Again, thanks from my heart for your prayers and support.

PS....we are about 80% moved and sleeping at our new house. Also having computer/internet connection issues with my laptop/router so am on an old W98 desktop with no current virucide (long story)....if I disappear for awhile it's lack of time or computer issues!! WIll keep you updated as I can!! :hug:

[Mackey Mouse]

Ann.. that was such a great post to read......he got to see his sisters. Wow, that is special and he was walking a bit.. now if he just can keep those numbers up so that they continue the chemo and make him all better... Enough for this sweetie..

[TruBlu]

What a wonderful report! Just thinking of him with his sisters has me all weepy this morning!:sad: BUT in a GOOD way!!!:thumbsup2

[Deesknee]

I'm new to this board. I have read most of this post. Avery is now added to my prayer list. I'm glad to hear things are now heading in a positive manner.

[Mickeyfaniam]

great news Ann :goodvibes
and continued prayers....

[MerryPoppins]

Glad to hear things keep getting better for Avery. I'm still praying for our little guy.

[goldcupmom]

Glad to see Avery is making some strides in the right direction. I'm continuing to pray for him and all your family, Ann. Thanks for keeping us posted.

Hopefully you will be settled in your new home soon!

[Belle1997]

Hi just to let you know I am checking to see how Avery is doing. Hope that he is still doing well. What a brave little boy.

[Deesknee]

Just checking to see how Avery is doing before I go to bed. He and his loved ones will be in my bedtime prayers.

[NHAnn]

Well, they had been starting to talk about a release date for Avery, but that is on hold now He needs a surgical procedure they have scheduled for tomorrow to remove/drain some infected "gunk" (the doctors said "think peanut butter/boogers consistency" :scared: ) down the left side of his back under the skin. It sounds like they will have to make a long incision and clean it out and put in antibacterial sponges which will need to be changed /decreased (surgically) every few days over at least a couple of weeks.
On the plus side, his immune system counts are still looking good and his spirits are good. Thank you for your continued prayers!

I have not been on line as much lately...I am busy/stressed with just moving , some extensive dental work (3 crowns and a root canal)...but thinking of you all and grateful for your support!! :grouphug:

[MerryPoppins]

The peanut butter gunk sounds horrible. :sad2: Poor little guy.

But I'm glad he's in good spirits and continues to make progress. It's wonderful that they're even talking about release dates, isn't it? He's fought so hard. I'm very proud of him. What a little trooper he is.

How are his parents holding up? I know this has been very stressful for them.

I'm continuing to pray.

[j's m]

Ann, thanks for the update, I was praying everything was ok. I'm glad you were "just" busy. I hate root canal.

That surgical procedure sounds awful, I hope it goes well. He must be such a brave little boy. :grouphug: to all of you.

[Mackey Mouse]

Hugs Ann.....I cannot believe they are talking about releasing him from the hospital......I mean it seems like yesterday we were beside ourselves with worry.. I know it probably did not go by fast for you all though..

Anyway, take care of you, get that move done and all that dental work out of the way so that you can enjoy his sweet face up close and personal when he gets home..

:)

[Deesknee]

What a tough little guy. Glad to hear his spirits are good and that they are talking about releasing him. I'm sorry to hear he has to go thru this surgery. I hope you are able to relax with him in your arms in your new home very soon. Good luck with all your dental work.

God bless. You and your tough guy are in my prayers continually.

[Belle1997]

Oh I am so glad they are talking release date. And so sorry he still has more surgery ahead. But every little step forward is a gift :) I was so worried this little guy would not even make it to Christmas. He has come so far. What a little fighter and I am sure all the prayers of all the people all over the world sure makes a difference.

Thanks for the update. Was getting a little worried.

Hugs to you and sorry about the root canals nasty stuff.

[TruBlu]

Just sending some love Avery's way...:love:

How are you all doing Ann?

[Saphire]

Still remembering Avery and praying for a release from the hospital soon! :)

[NHAnn]

Hey you all...life's been crazy as usual...I came down with a chest cold late last that has settled into laryngitis this week, feeling kinda blah but just can't take the time out to rest and get rid of it once and for all...between work and the new house. This too shall pass.

Avery has been doing GREAT...the procedure and follow ups on that drainage issue in his back have progresed very successfully. He is spending much more time out of bed, out and about the hospital just for scenery changes and doing PT and such. Nothing has been mentioned about a release date the last few days. My gut is telling me that it's coming --but because of the hopes and then setbacks before, I think DS and DIL are not saying anything to anyone. I think they don't want to "jinx" things and that it will be sudden to the rest of us when they say "Avery is going home..." :banana:

[rlduvall]

Wonderful, wonderful news. :dance3: :dance3:

[j's m]

Great news about Avery, Ann. So glad he's up and about.

Sorry you're not feeling well, but it's no surprise you're run down with everything going on. Hope you feel better soon. Take care.

[madaboutMickey]

Continued prayers for you and your family, especially Avery.

[Mackey Mouse]

I have been thinking about Avery on our trip to WDW and could not wait to get back and check on him..

So glad that he is doing better Ann, wow...amazing how resilient children are, they bounce back after horrifying experiences... I have him in my prayers still and hopefully we can get him home to his family and just visiting hospital on an outpatient basis..

You take care of you too.....hugs all around.

[Mickeyfaniam]

glad to see things are going better for Avery. I hope you're correct and that he will be going home soon. {{{HUGS}}} to you And of course continued prayers for Avery

[NHAnn]

Avery is doing great! he's been having antibacterial sponges inserted and then changed out every 2-3 days this past week...this is in his back where there was an area of abcess/infection that would not drain through tubes. It's healing very well, smaller sponge each time. This appears to be the final hurdle before possible release and back to outpatient chemo for the leukemia. Keeping fingers/toes and everything crossed and praying too of course. In between procedures he is feeling well enough to be doing some PT, excursions to the medical center's food court and shopping areas, children's playroom and even the teen lounge where there's a big screen TV. His humor and personality are back full force. :thumbsup2

[Pinnie]

Continued thoughts and prayers for Avery and his family.

blessings

pinnie

[Jake & Crew]

so glad things are moving in the positive direction.....still here and will keep praying for Avery to go home and most of all return to complete health as quickly as possible:grouphug:

[TruBlu]

:dance3: SO HAPPY TO HEAR THIS GREAT NEWS!:dance3:

My little Cam is still praying for Avery every night. We read your update just before bed last night, so Cam's prayer went like this...

Dear God please make Avery better, and better, and better, and better, and better... (he said that over and over for about 5 minutes)... and better, so he can go home with his sisters! :goodvibes

And, he told me that when Avery's cancer is all gone and he feels better we are having a play date! :yay: I can't wait for that day! :goodvibes

[Deesknee]

So happy to hear Avery is doing well. He and family continue to be on my prayer list.

[j's m]

Ann, I'm so happy the news continues to be good. Just the fact that he is up and around is wonderful. I'll continue to pray that all the other bad stuff stops and he can just concentrate on the leukemia.

[NHAnn]

Big news.....they are planning to release Avery home on Tuesday!!
He will stll have the vacuum dranaige for the incision in his back...he will be having PT at home each day as well as daily visiting nurse, and day trips up to Hanover twice a week for the time being....but this is just so amazing (and a bit scarey). In 6-8 weeks he will be in another intensive chemo phase which can be tricky, but they are hopeful his strength level will withstand any little bugs that dare to come knocking.
He, and his whole family are in great spirits and looking forward to adjusting to another "new normal" :thumbsup2

[MerryPoppins]

I'll keep my fingers and toes crossed that all goes well. And of course, I'll keep praying for that little angel.

[Belle1997]

This is so amazing. He has come so far!!!! I prayed for Avery last night. And have done so over this stressful time. So nice to see he is getting home. A little miracle we can all be thankful for.

[Dan Murphy]

Great updates to see, Ann. :thumbsup2 What a good read.

Continued prayers for Avery and all the family. :hug:

[Saphire]

Big news.....they are planning to release Avery home on Tuesday!!
He, and his whole family are in great spirits and looking forward to adjusting to another "new normal" :thumbsup2

How WONDERFUL! Oh, best wishes to the whole family as Avery is welcomed home. And to you too, Ann...you have been very faithful about bringing his story to us and updating us so we could pray for him. Please continue to tell us about his progress. :goodvibes

[TruBlu]

Tomorrow is the big day!!! We're praying that all goes well and sending lots of love to our Avery!!!:cheer2:

[Mackey Mouse]

I cannot wait to see how it goes for Avery tomorrow......lots of hugs and good wishes coming your way for a safe trip home and just comfortable time with his family...

Ann, let us know how it goes, please...

[j's m]

Hope everything goes well today and Avery gets to go home. Continued prayers for him and his family. Please continue to update us.

[NHAnn]

He's home!! :thumbsup2
They are getting settled tonight and I hope to have more to report tomorrow.

We're just all so happy and grateful that they are together as a family for the rest of this journey!!

[Dan Murphy]

Wonderful, Ann. :hug: The whole family must be so relieved and thankful. Continuing to keep Avery and family in prayer.

[marymargaret22]

I am so happy for you and your family. we will keep you and your family in our prayers.

[NancyIL]

That's wonderful news, Ann! :)

[Deesknee]

What a wonderful bit of news! Prayers continue here at my home. God Bless you all, especially Avery.

[TruBlu]

:cheer2: Avery ROCKS!!!:cheer2:
I am so happy for you all!!!:goodvibes

[NHAnn]

An article in a big NH newspaper today about my favorite superhero!!!

http://www.unionleader.com/article.aspx?headline=After+3-month+fight%2c+he%27s+home&articleId=3d347314-ada3-4277-828b-75284dadc491

[Deesknee]

Ann, that is a very nice article. Avery is very lucky to have such a wonderful support system. His parents sound so grounded. How wonderfully optomistic. Prayers for them all.

[Mackey Mouse]

Ann.....I am so happy for all of you.. Way to go Avery..

Read the article and thought what an amazing time he had, all of you for that matter.. Now keep him healthy and go back and kick that leukeumia the heck out of there.

Right now just enjoy him being home and that sweet face. Hugs all around to you and your family Ann..

[Ava31]

That's wonderful! Your family must be over the moon.

[JunieJay]

I'm so happy that sweet little boy is home where he belongs. This family is an inspiration to us all! :grouphug:

[diz8297]

God bless you all. May God continue to hold Avery in his hand.:grouphug:

[NHAnn]

Saturday night a spaghetti dinner/auction was held for Avery's family. The Superhero himself, with both parents and sisters made a brief surprise appearance. It was great for them, and all of us, that they were together as a family. They could not stay long, but I wanted to share this pic of Avery, his daddy, and his Grampa (my DH) :love:

http://www.imagestation.com/picture/sraid225/p7fda48bc99ecc0dd993402f219184f74/ea8579d2.jpg

Avery continues this week with a couple of "day trips" to DHMC for dressing change on his back and some chemo and checkups.
I'll keep you posted!!

[safetymom]

That is wonderful that you were all able to go. Thanks for sharing the great news.

[Saphire]

What handsome guys, all three of them! Avery has the most beautiful smile. :goodvibes

[snappy]

What a wonderful picture of the boys. Did you take it, Ann? Three very handsome men.

It is wonderful that he is home. Avery still has a lot of healing to do, but it will be so much easier to do it when he can sleep in his own bed.

What a strong family you have.

[j's m]

It makes me cry to see his beautiful smile after all he's been through. What a brave little boy. And the other two are cute, too. :) Thanks for sharing.

[Belle1997]

Thanks for sharing, nice to have pics of the people we are praying for.
It is truly a miracle he made it home. Now to keep praying for his cure.

[NHAnn]

That smile sure is something, isn't it? He got a tad overwhelmed by the crowd (there were over 200 people there) and the emotion of the crowd (as did his parents and sisters too) but they stayed for awhile...and yes snappy, I caught Grampa with DS and Avery after they pulled his little stroller thing off into a little alcove for a breather. :)

[Mickeyfaniam]

Nice article Ann and great picture!! :thumbsup2
So happy he is home and doing well.

and Continuing to pray for Avery & family

[TruBlu]

What a beautiful family you have Ann!!! Avery is adorable!!!

[NHAnn]

I saw my little hero and his sisters tonight, all are doing well :thumbsup2

Tuesday he goes in for a skin graft procedure, taking skin from his leg to put over the wound which is healing up nicely in his back, but they had to take so much tissue/skin to get the abcessed stuff underneath, he needs a graft. They want this done and healed up before he starts a more intensive course of chemo in about 6 weeks. They'll knock his immune system out again, so we are hoping he regains and builds as much strength as possible before that to withstand infections.

I thank you all again for keeping him in your prayers!

[Mackey Mouse]

God love him... that chemo sure knocks the heck out of people, grown ups as well as the little ones. When I think of the little ones going through what DH has gone through, it makes me so sad....

Keep being strong Avery and get through these next obstacles and onto knocking this disease out of your body with the next round... Hugs to you Ann.... he is still in my prayers.. Love the pic, what a smile on that sweetie.....

[snappy]

That's a lot of surgery, Ann, for such a little guy. However, as you know, I now sing the praises of plastic surgery. They are not just artists or cosmetic guys, but very good surgeons if you get the right one. I put the good ones on a par with any great surgeon.

I'll keep him in my thoughts and prayers through this so he can heal and get on to kicking some serious cancer butt.

[NHAnn]

Avery had a skin graft yesterday, they took about an 8x3 " piece from his leg to put over his back where the big abcess removal was. He tolerated it well and insisted on visiting all his buddies in various parts of the hospital after coming out of recovery in day surgery. Some pain as to be expected on the leg where they took the skin. Ouch. But he's home and doing well :thumbsup2

[Mickeyfaniam]

Glad to hear he got to go home yesterday Ann :thumbsup2
continued prayers....

[annrae]

Hi Ann: So happy to hear that Avery was able to go home yesterday. He is such a trooper and his strength as well as your strength is coming from "somewhere out there."

I'm glad your mammogram went well, Ann. Have a good week - hugs, Barbara

[Deesknee]

I haven't been on the boards much lately, but sooooo soooo happy to read Avery is doing so well. Continued prayers. What a beautiful sight in that picture....Talk about a picture is worth a thousand words. God bless you all!!!

[Saphire]

Just checking in to see how little Avery is doing at home. Hope all is well, Ann. :)

[NHAnn]

Thanks for asking! All is going well...crazy busy of course, but well.
Avery had the vacuum thing removed from the incision in his back, and skin grafted from his leg to close it up. It's healing really well. He's still doing outpatient chemo on a "maintenance" level every 10 -12 days or so, and has some oral stuff he's taking at home. This is all going pretty well, he's building up his strength (I guess we all are ;) ) and in mid-April he will begin an 8 week more intensive chemo regimen. His immune system will basically get knocked out again. IF it all goes well with no setbacks (infections like last time) at the end of that 8 weeks he will be on a low level maintenance and monitoring phase for another 2-3 years. That phase basically "trains" the marrow to not make any more leukemic cells....and hopefully by the time he's in middle school this will be a long ago memory :thumbsup2 His sisters are thrilled that he is home again, though they are all adjusting to the "new normal" :)

[Mackey Mouse]

I am so glad that all is moving forward Ann and will keep Avery in my prayers... Hopefully when they boost up the chemo, there will be no issues, I am praying for that as well..

Hugs to you all.. Spring is coming!!!!!!!!

[harleygirl]

As always the Dis has someone who can help. My boss just found out Fri that he has Leukemia. We are all in Shock mode. I was surfing about to start a thread myself and happened on yours. I read your first entry and came here to say hello. now I'll go catch up. thank goodness for the dis!

[NHAnn]

HArleygirl, there are many types of luekemia...childhood types can be very different from adult.

I have some websites bookmarked, if you want/need any direction depending on which type your boss has.

Hang in there :hug:

[harleygirl]

thank you

he came in today and we all had our opportunity to pump him up, and surprisingly he isn't really phased. He says he knows we think he is crazy but he is just not worried. He isnt looking forward to what is to come, but he isnt scared. So that is one step in the right direction, he has a positive attitude. He finds out Tues what form he has and from there what method of treatment, I guess...thanks for yoru kind words and for putting your story out here for others to find and draw strength from

hugs for avery

[TruBlu]

How's our little guy this week Ann? We are still praying for him! DS5 (Cam) is still planning that play date! :rotfl:

[Towncrier]

I have continue to pray for Avery and for his family. And I get daily updates from Caring Bridge (which I look forward to with great anticipation). It sounds like your little man is turning the corner and doing remarkably.

Continue prayers for Avery, for his family and friends, and for his caregivers.

[NHAnn]

Hey Towncrier, good to see you! And thank you (as well as EVERYONE here, for the continued prayers and support).

Avery is doing really well, the back is healing, he's building up strength (while on a mild maintenance oral chemo) In a couple of weeks he will start up an intensive 60 days of chemo. That will be a challenge as the immune system will be knocked out again. But we're all feeling ready to get on with this phase of the treatment. He's a real trooper.

TruBlu...give your little guy a hug ! So sweet!!

[Mackey Mouse]

Hi Ann..

Just checking in on Avery. Hope all is going well with him, we all know chemo is no fun, but necessary to knock that Cancer out of there..

Do keep us updated..

Hugs to you and yours.

[NHAnn]

Avery and his whole family came for a visit Saturday morning. They all amaze and inspire me, all 5 of them. Avery's skin graft on his back is healing well, the harvest site on his leg is bothersone to him but also healing well. His hair is a little thicker but that will disppear once the next chemo phase starts up. On Friday the 13th :scared1: he goes to DHMC for a busy day....the port installed in his chest, his first "delayed intensification phase" chemo treatment, and a check with plastic surgery on his graft. The 60 day phase not sure how often the treatments are during the 60 days) will be outpatient assuming/praying that he remains infection free.

I'll keep you posted!! :grouphug:

[Deesknee]

Happy to hear he is doing well. Prayers continue from my home.

[NHAnn]

Today Avery spent the day at the hospital. He had his pic line removed, anda port installed for chemo delivery. HE also had his first dose of this next intensive phase of chemo. This will be a critical 60-90 days...to get the chemo and remain infection free. If it goes without any complications he will then in a maintenance/monitoring phase for a couple of years before being considred "cured" . He is home tonight and doing well :thumbsup2

[Deesknee]

Just checking in. I'm glad to hear Avery is home and doing well. Prayers continue.

[TruBlu]

Ann,
The Easter picture made me cry - tears of joy this time! I called my boys in to see it and they cheered and danced around. We are so thankful that he is doing better. We are still praying for you all! :grouphug:

[Mackey Mouse]

I am glad that they put the port in.. it does make it easier on the patient to receive the chemo. We will pray him through this, I know we will.

Hugs to you Ann, know we are there for you.

[NHAnn]

Avery's first 2 weeks of the "delayed intensification" phase have gone well.
He did have a migraine headache side effect, but controlled with tylenol/codiene and ibuprofen. HIs spirits are great as are his parents and sisters :thumbsup2 The next several weeks as his white blood counts drop will be critical...we will keep supporting his amazing spirit with our prayers and positive thoughts!

Tomorrow night we are attending a big "Bald is Beautiful" party. It started as a fundraiser idea for the family ...but will really be a celebration of the journey so far. The kids will not be there, it'll be an adult evening....family, friends, coworkers of DS and DIL and extended family. There will be a DJ but the real entertainment will be head shaving! It started as a joke when a friend of DIL's, who is coordinating some fundraiseres for them, suggested a fundraising-head-shaving party to honor and support Avery. DH snorted and said "well I wouldn't shave my head for less than two grand. " SOme of his old college frat buddies heard about it and lo and behold...more than $2K has been pledged for DH to shave his head. So tomorrow is the big night. :rotfl2:

[mommasita]

Glad to hear that it is going well with Avery so far..

What a splendid evening that sounds like. For a fantastic cause indeed..Isn't it wonderful what they have raised.

Hugs to your family:grouphug:

[NHAnn]

Bald is beautiful!

DH and youngest son (Avery's uncle) are 4th and third from left, standing. Two on left are friends of DS, on right the 5th is SIL, my stepdaughters's DH, nd a family friend. Kneeling is one of DH's college frat brothers who aprticipated too!
http://www.imagestation.com/picture/sraid225/p0b42a5123946d075e85686e854072e83/e9b8c84a.jpg

A close up of DH ..."after":
http://www.imagestation.com/picture/sraid225/p28e37e314274736137144290b85d4cb6/e9b8c8c6.jpg

This was an adult only evening but Avery was there in a video clip shown as part of slide show...singing a recent original song composition:
"Wheeeeere...oooh wheeere...is my haaaaair?!?!" :cloud9:

[chip91]

NH Ann, I just read through your journey, prayers are with your entire crew...

[mommasita]

Love the pictures. WHat a great thing they did.:grouphug:

[Towncrier]

Thanks for the photos and the update. I have been reading the daily entries in Avery's journal and have continued to keep him and your entire family in my thoughts and prayers. And please make sure to tell all those newly bald guys to make sure to wear a hat when they are outside. Trust me. I speak from experience.

[KPeveler]

Ann - how is avery?

[Mackey Mouse]

Yes I agree, we need an update.. Love the pictures of the guys shaving their head.. too funny Ann..

You have to keep your sense of humor when battling this disease.. Hugs to you and yours..

[Deesknee]

Just checking to see how Avery is doing.

[KPeveler]

Ann - I am going to hope that no news is good news. Hope to hear from you soon. you're and your family are still in our thoughts and prayers

[MerryPoppins]

I subscribe to Avery's CaringBridge page. His journal entry for today says that his blood count is too low even after the platelets he got last week. So he's going to need a blood transfusion. But overall he seems to be doing well and they continue to "keep moving upward". Avery said the trip to the hospital was boring. ;) Recent entries seem to show that overall he's been acting more like himself, but the chemo treatments sort of take it out of him.

I keep praying for his continued good spirits and excellent responses to the treatment.

[Towncrier]

I'm also subscribed to Avery's CaringBridge page and the daily emails help remind me to keep praying for the little guy and for the family. Keep the faith, Ann.

[NHAnn]

Hi all....thank you for all your continued thoughts and wishes.
I have been busy this last month or two, at work and also with issues surrounding my parents in Massachusetts, so have been neglecting keeping you up on Avery's progress.

Avery's been having to have transfusions, his red blood and platelet counts are not coming up as fast as they'd like, but the neutrofils and WBC are OK...
he is in good spirits and the family is hanging in there, keeping an eye ont eh light at the end of the tunnel, hoping to get into maintenance phase in not too many more weeks!!

[Mackey Mouse]

Hugs Ann... we will keep him in our prayers and are looking forward with you all to the light at the end of the tunnel..

Hope your parents are doing ok..

[TruBlu]

Does anyone have a link for Avery's caringbridge site? I'm not sure what happened to my link.

Thanks!!
Tracey

[MerryPoppins]

I sent you a PM TruBlu.

[TruBlu]

I sent you a PM TruBlu.
Thank you! I was spelling it wrong. :upsidedow

[NHAnn]

Hi everyone!

Just wanted to share that we had dinner with Avery & family last night!!
It has been weeks since we've seen them, they've been keeping him pretty isolated as he is at significant risk of infection still. But it was a rainy day and they felt bored and cooped up...and we have all been healthy and don't mind being doused in Purell at the threshold so when they suggested we come for dinner and a visit we jumped at the chance.
Avery is in great spirits and feeling good. The counts are moving int he right direction, just a little slower than we'd like to see, but it's a postive anyway!!
We really had a great time, Avery received a magic kit and has been working hard at perfecting a few tricks...the kit has a cape and hat and props and he put on a little show for us. His sisters are a joy as usual ...Delaney (almost 4) has changed identities with a little girl named Angela. Yep, Angela is the new family member, she looks just like Delaney but says that Delaney is off somewhere far away with her (Angela's) family. So we have a new grandchild, Angela :rotfl2: And she thinks this family is much better than her original one. :thumbsup2

[a1tinkfans]

I just came across this thread and want to say that I will include Avery in my prayers!
I hope that he is getting stronger, chemo is so difficult for an adult, for a child to have to deal with is heartbreaking!
God Bless to your whole family!!
:grouphug: :grouphug: :grouphug: :grouphug: :grouphug:

[Mackey Mouse]

Ann, so glad that he is doing well, although a little slow from what I am reading, but hey, it is working and that is a good thing..

I was LOL about the Purell.....everytime the little Prince comes to our house or we go to his, we have to scrub down in Purell.....first baby and he was preemie so whatever she needs us to do to get our hands on him, we will.. I love being a grandmother....

Hugs Ann and prayers for Avery and your new grandchild, Angela;)

[NHAnn]

Well, Avery's blood counts weren't quite as good as they'd hoped for today, he did not quite make the cutoff to go into the maintenance phase, but made great improvements since last blood draw last week, so he is moving in the right direction. They'll draw again Tuesday. (The Visiting Nurse does this) If the counts meet the requirrements, he'll go up to the hospital the folowing day for a spinal chemo and then will be officially in maintenance phase! :thumbsup2

[Deesknee]

Lots of prayers for great counts on Tuesday!

Dee

[Philagoofy]

All good thoughts to your little guy Avery. I wish him well and all of his family the strength & encouragement & positive thoughts to get through this.:grouphug:

[NHAnn]

Great news today!!
Avery's lab counts were SUPER today and he is officially starts the "maintenance" phase of his chemo treatment tomorrow!!
:cloud9: :woohoo: :banana:

He still has a long road of treatment and monitoring ahead of him (a couple of years) but it will be less frequent and less difficult physically as time goes on.

I thank you for being so supportive of him, of me and the rest of our family....
I'll continue to keep you posted!! :thumbsup2

[annrae]

How wonderful Ann! This is awesome news for Avery and all of you! There definitely is an angel on Avery's shoulder taking care of him! Hugs to all of you! Barbara

[MerryPoppins]

That's amazing news! I'm so happy for him and for your whole family. You'll all remain in my prayers.

[snappy]

Best news I heard all day!!! Thanks for posting the update, you sure brightened my day and I know yours is brighter too. I am glad he is back on track.

[Philagoofy]

:goodvibes Great news. Good thoughts & best wishes for continued improvement. :)

[diz8297]

Wonderful news!! Give him a hug from his Dis friends!! I'll keep him in my prayers for continued and full recovery!!!!:grouphug:

[Mackey Mouse]

Woohoo for Avery... we have him in our prayers as he goes forward to recovery...

Hugs to you Ann!!!!

[Deesknee]

Ohh! What wonderful news! You made my day! Continued prayers for him and his very blessed family!!!

[mommasita]

Fantastic..:goodvibes :banana: :banana:

[antmaril]

Great news :cool1: :banana: :cool1: :thumbsup2

[rjeash]

I just came across your post. I have tears of joy and chills at the wonderful news. Praying that Avery continues on to a happy, healthy wonderful life.

Praise God!!!

[Deesknee]

Just looking for my monthly Avery fix. Praying he is still having wonderful progress.