View Full Version : Updates on AVERY. (good news update pg 33 post 489!)

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11-26-2006, 05:04 PM
I thought my first post on this board would be about my dear mom....8 years ago (at age 72)she had brain surgery for 2 anuerysms, she stroked, she was comatose for many weeks, in rehab for many mroe and in a nursing home since. But she has defied all odds, and surpassed all projections as to extent of recovery, even from world renowned neurosurgeons at Mass General. When Marsha started this board, I posted mom's pic at her 80th birthday in September, with her 83 yr old sister. A couple of weeks after the party she fell and broke her hip. She developed pnuemonia nd we almost lost her one night when she was in extremem resiratory distress. But she rallied and a week after the hip surgery was backat the nursing home and kicking butt at physical therapy and winning bingo games as usual.

Thanksgiving morning we got a call that she had been taken to the ER...she has pneumonia again. :(

But yesterday afternoon we were dealt another devastating blow...not about my mom, about my most precious first grandchild, my 5 year old Avery. He was diagnosed with luekemia. I can't even get my mind around this. He was not feeling well at the T-day table, I was a bit distracted worried about mom, but DIL said he hadn't been himself for a week or so. I noticed his color was off and he was unusually whiney and tired but I thought maybe he was getting a little cold, and they also mentioned he'd had a flu shot Monday. DH did remark on the way home that he was concerned about how sick he looked. Apparently he got worse Friday ...and yesterday they decided not to wait for his Monday appt and got him in to the doc yeaterday afternoon. Based on the physical exam and some rushed preliminary blood work they said he appeared to have luekemia, wanted him to go ASAP to Dartmouth Hitchcock Medical Center in Hanover, an hour or so from here, for a transfusion. They said plan on him being there at least a week, probably 2, maybe more depending on the further testing and treatment. They called us to come stay with his two little sisters. DIL's mom came up from Mass today and took over there. We do not know much more today, waiting for word on today's testing and meetings with pediatric oncologist. I can't even grasp that...pediatric oncologist.... I know medicine is wonderful now and he is in good hands there...but my heart is breaking. Please pray for my little guy.

edited to change title....we're out of shock and denial mode and ready for the battle!! :thumbsup2

King Triton
11-26-2006, 05:09 PM
I'm so sorry about your news. :guilty: When life gets too much, just give it to God and let him deal with it. It's in God's hands now. My thoughts and prayers are with you.

I'm sending you some extra pixie dust your way. pixiedust:

Mackey Mouse
11-26-2006, 05:17 PM
Ann... I just read this, I have pm'd you, and we will start praying for the little one....Hang in there, know we are here for you..

Dear God, how many more of us with these dreaded diseases...

11-26-2006, 05:21 PM
Your grandson will be in our prayers and thoughts....it is always harder to deal with these things when they happen to young ones. But don't forget kids have a lot of fight in them and are stronger and smarter than we give them credit for.

11-26-2006, 05:25 PM
:grouphug: Ann - you and your grandson will be in my prayers!

11-26-2006, 05:33 PM
I will keep you all in my prayers. It is so tough to watch a child suffer with an illness.

11-26-2006, 05:41 PM
I'm so sorry to hear this. I work in a children's hospital and I can assure you, they will do everything in their power to help him. It just isn't fair. Kids shouldn't get cancer. :furious: Where is that kicking the dog icon when you need it?

11-26-2006, 06:36 PM
Many prayers being said for Avery, dear friend. I always will remember his Christmas Sweater picture a few years back. One of my all time favorite pictures.

As the above poster said, in the Children's Hospitals they work as hard as they can. This is so true as you know George used to work at a children's hospital.

Always know I am here for you. I am praying for peace for you and the family during this time.

"God is our refuge and strength, always ready to help in times of trouble."
(Psalms 46:1)

Teri :hug:

11-26-2006, 06:46 PM
I am so sorry to hear of your news. Prayers and hugs are with you. Dartmouth Hitchcock is wonderful. My kids go there for their surgery. They were born with a cleft lip and palate. In my opinion they have the best Doctors. Best wishes for your grandson. Please keep us updated.

11-26-2006, 07:10 PM
Im so sorry to hear this..your grandson will be in my prayers

11-26-2006, 10:06 PM
Ann my heart is breaking for you. Prayers for your little guy and the rest of your family.

11-26-2006, 11:12 PM
You and your entire family are in my thoughts and prayers. I hope that your mother continues to improve and your grandson gets well very soon.

11-26-2006, 11:18 PM
We've already talked, but just wanted to offer you a :grouphug: here, too.

Mackey Mouse
11-27-2006, 04:50 AM
Ann, please keep us posted here, we are praying for your family... Hugs

11-27-2006, 05:15 AM
I'm so sorry Ann.....man, you've had more than your share I would say. I'll be praying for your grandson as well as your mom. Dear God....when is this going to stop!!!!! Too many stories of this dread disease. Know that we are here for you.....praying, praying, praying!!!!!

11-27-2006, 06:27 AM
thank you all...from my heart.. :grouphug:

we have learned it is "ALL" acute lymphoblastic luekemia, a common type of childhood luekemia. Testing and treatment plannning continues today .

Mackey Mouse
11-27-2006, 07:25 AM
OK...so we start planning and do treatment and we beat this darn thing with the power of prayer..

God, I am so angry lately.......geez, a sweet little baby.. I do not get it.. Hugs to you Ann... we are here for you.....

11-27-2006, 07:47 AM
Ann, my thoughts and prayers are with you, Avery, and your entire family. :grouphug:

11-27-2006, 07:48 AM
thank you all...from my heart.. :grouphug:

we have learned it is "ALL" acute lymphoblastic luekemia, a common type of childhood luekemia. Testing and treatment plannning continues today .

Just wanted to give you a word of hope. My little niece developed ALL at the age of 18 months. She was treated aggresively for 2yrs. It was a rough go for awhile there, but she is now a wonderful, vibrant 10yo with no health problems. :thumbsup2 We'll pray for the same experience for your Avery

11-27-2006, 11:13 AM
Ann - Avery has been in my prayers and will continue to be in my prayers. God bless him. :grouphug:

11-27-2006, 11:53 AM
Just wanted to give you a word of hope. My little niece developed ALL at the age of 18 months. She was treated aggresively for 2yrs. It was a rough go for awhile there, but she is now a wonderful, vibrant 10yo with no health problems. :thumbsup2 We'll pray for the same experience for your Avery

Thank you!! It is a ray of hope to hear successes!! :hug:

and thank you all again for the support and prayers!!

11-27-2006, 12:48 PM
Ann, I am keeping your little grandson in my prayers for his speedy recovery. My younger DD was diagnosed at age 12 with a serious heart condition, and we were set up with a pediatric cardiologist at Dartmouth Hitchcock to save us from driving so frequently into Boston Children's Hospital. The doctors worked in tandem and I have nothing but wonderful things to say about Dartmouth Hitchcock.

They have come so very far with childhood leukemia and I am thankful he is close to such a wonderful facility. Hugs to you..

11-27-2006, 01:17 PM
I will be praying for Avery. :grouphug:

11-27-2006, 05:03 PM

Continued prayers for Avery. I have thought about you all day.

You are loved and so is your dear family.

Hang in there, dear friend. I just know little Avery is going be just fine just like his Grannie Annie ;) was. Your illness prepared you to be a strength for little Avery. :hug:

Teri :hug:

11-27-2006, 06:31 PM
Sending more prayers for Avery and family, you and your mom. :grouphug:

j's m
11-27-2006, 08:41 PM
Ann, I will keep little Avery and your whole family in my prayers.

11-27-2006, 08:58 PM
Like you, I cannot even grasp how something can happen to anyone, much less a precious child. You and your family, your mom and Avery will be in my thoughts and prayers.

11-27-2006, 09:48 PM
Many :grouphug: to your family. I will add your family to my prayers.

11-28-2006, 06:52 AM
We got to see Avery last night! :thumbsup2 We drove his daddy up to Hanover and home, so he could have some time in the car each way to rest, talk, or whatever without having to drive.

Avery looks great, the transfusions really helped his color and energy level.
S&DIL met with a nurse coordinator as well as their oncologist while we were there. I was with Avery during most of this, allowing S&DIL to focus on the discussions. We were were around for bits of it but I mainly tried to engage him in showing me stuff around the floor, and games in his room. WHata marvelous facility they have.

Avery had his marrow biopsy yesterday morning and tolerated it very well.
He will have a spinal tap today and the first chemo treatment.
If all goes w/o a hitch he will be in the hospital for 2-3 weeks and then can be released and the continuing treatment can be outpaotient and home.

I thnak you all again for all yoru prayers and support!

11-28-2006, 07:55 AM
So glad to hear Avery is being well cared for and treatment is beginning. You have many many friends on this board (and another I know of) that are praying for your little guy. :grouphug:

11-28-2006, 07:57 AM
I am glad you got to visit with Avery last night, Ann. I am sure seeing him was a major boost for you and your DH. How thoughtful of you to drive up so your son could relax and talk about things without concentrating on the drive.

It definitely sounds like Avery is in the right place. I really like the way they are moving full speed ahead with both tests and treatment. Looking forward to the day that you post he is home again.

Thanks Macky Mouse for this new board. Ann has friends all over the dis boards, This is the perfect place to keep us all updated. What a brilliant idea! When MinnieM3 and her husband were posting during the spring and summer, the posts would sometimes be on the GAGWTA thread and sometimes on the general Community board. That board moves so fast, it was easy to miss their updates.

There will be sadness here but also great comfort to be had. The name of the new board is a perfect choice. I hope others needing care and compassion for whatever reason will find it and join in.

11-28-2006, 08:21 AM
I am so glad that Avery is already getting the treatment he needs. What a blessing to have such fantastic doctors so close by!

My sweet baby will turn 5 this Friday. Each time I hug him I think of Avery and send up extra prayers for him.

Stay strong! :grouphug:

11-28-2006, 08:38 AM
Ann, that is great that Avery is tolerating the treatments. I am sure it was good to see him. I will keep you all in my prayers.

11-28-2006, 09:28 AM
Oh Ann.

Great Big Giant hugs to all of you. Sounds like you guys are in the right place, and gearing up to fight the good fight. You'll be AMAZED at how Avery tolerates all of this.

You know that I do a great deal of volunteering with the Jimmy Fund, and I've had the pleasure of meeting several young warrior survivors of ALL. These kids are amazing.

PLEASE let me know if there is anything I can do.


11-28-2006, 09:53 AM
Ann, I am praying for you and your family. I am a grandmother, too, and I just can't imagine how terrible it would be for one of them to be seriously ill. I know your heart is aching, and I am praying especially hard for you to be able to stay strong and help your son and daughter-in-law through this. No one should have to go through this, but especially not little ones.

Hugs to your whole family -- especially Avery.

11-28-2006, 10:23 AM
Just wanted to add my {{{{{hugs}}}}} to the mix! You guys are in my thoughts...

11-28-2006, 12:21 PM
Ann- I'm glad you all are in fightin' mode! I know that you'll be an incredible source of help and strength to your family...prayers for Avery and all of you! :grouphug:

11-28-2006, 12:56 PM
Hi Ann
I had no idea this board or thread was even here or I'd have been here sooner. Thanks for the link! I'm glad to know you are getting answers and good treatment.
I think about this all day each day since I read it! Avery and the family have been in my prayers and will continue to be there!
Hugs Ann :hug:

11-28-2006, 03:12 PM
More prayers being said. (All over Jacksonville :) )

I am glad you were able to see him. It sounds like things are off to a good start.


11-28-2006, 05:47 PM
Ann, I feel that I know you without ever seeing you. How terrifying for your family, but how wonderful that treatment has started so quickly. Many prayers are being said for Avery and for all of you.

11-28-2006, 07:39 PM
Keeping Avery in my prayers. :grouphug:

11-28-2006, 07:50 PM
Avery is in my thoughts and prayers. Worrying about a sick child is one of the worse worries there is but keep your head high and know the cure rate for this disease is quite high.

Mackey Mouse
11-28-2006, 08:14 PM
Glad for the update Ann....children are just so tough and come at this with great strength......Hugs to all, keeping Avery in my prayers...

11-28-2006, 08:21 PM
Ann - You family will be in our thoughts and prayers.


11-29-2006, 01:16 AM
I'm glad things are going well, Ann. Keeping you all in my prayers. :grouphug:

11-29-2006, 04:07 AM
:hug: Prayers for Avery and you all this morning and throughout the day.

11-29-2006, 05:54 AM
I am so sorry to hear about Avery. Like someone else had said, it is even harder to hear when it is someone that young. I will be praying for him also. :grouphug:

11-29-2006, 05:09 PM
Continued prayers for little Avery and all of you. I'm thinking of you often, and each time I say another prayer.

11-29-2006, 05:32 PM
I am very happy to report that Avery is doing very well :thumbsup2 and I know that the prayers and postive thoughts and support of all my extended family, in RL and here on the DIS and the internet, have had an impact.

He had a spinal tap yesterday to check the spoinal fluid for concentration of the leukemia cells. At the same time they gave him his first dose of chemo, a direct hit to the spinal fluid. Then last night he had more IV chemo.

Today he had oral chemo, and IV meds including steroids to control side effects. And meds to help his kidney function...the chemo will kill the leukemia cells and he will expel them through his urine. Of course THAT causes side effects too...like increased appetite. His oncologist said that for today his job is to "play, eat, drink, and pee". He did real well at all of those endeavors today. :)

Apparently some of the adolescent patients have taken a liking to him and have shown him how to "ride" his IV tower as he makes his way around the floor. Today his mom was pushing him around and toppled the IV pole, 2 IV bags, him, and the 7 stuffed animals along for the ride attached to the various clamps and hooks. DIL said about 50 people came running. He got a little air in his lines but everyone was unscathed except for DIL who said it was probably the first of many embarrassing "medical mom" moments...
so she too is drawing strength and maintaining her sense of humor :goodvibes

The docs are VERY pleased with his progress thus far I thank you again so much!!

11-29-2006, 06:35 PM
good to hear that he's doing so well Ann!

And I did read about that IV topple :teeth:

continued prayers....

11-30-2006, 08:43 AM
Gosh, I bet your DIL was mortified but I love her medical mom moment.

That is one that should be published somewhere.

Hang in there mom and Ann.

Glad the little guy's prgress is on track.

11-30-2006, 08:48 AM
:grouphug: :grouphug: :grouphug:

11-30-2006, 06:02 PM
Well, the poor guy's chemo caught up to him last night...I guess he had headaches, nausea and vomiting during the night. :guilty: They are tweaking some of the meds to counter the side effects.
They are still talking thought, about a possible release to home and outpatient chemo, early next week, so that is still positive! (My guess is if he is stable and they can reasonably counter the side effects, then he is better off at home than in hospital...less germs there!!)

many thanks again for your prayers!

11-30-2006, 08:04 PM
Continued prayers and love coming your way. :grouphug:

11-30-2006, 09:20 PM
Ann, Avery and family in my prayers tonight. I know two girls, both were in 3rd grade when diagnosed, today both in high school with perfect health. You would never know they had cancer, so never lose hope.

Avery is one lucky grandchild to have you for his grandma. I know you have been through so much of late, but your courage and strength are amazing.

11-30-2006, 10:36 PM
Still praying, hoping they get the side effects worked out so he feels better and can come home soon. :grouphug:

Mackey Mouse
11-30-2006, 11:33 PM
Praying like a mad woman that this sweetie gets to come home and do it all out patient......he will be happier at home.. God Bless him..

Hugs to you Ann.. got you covered...

12-01-2006, 02:10 AM
Hi Ann, I'm new to these boards, but not new to the DIS, and have been following your story of Avery. What a Grandma you are! Keep up the great work, you're the glue keeping your family together. Plus you're keeping everyone here informed so they can support you. So many of us are feeling your pain right now, and are keeping all of you in our thoughts and prayers. So sorry to hear that he's suffering from the side effects of the Chemo. Hopefully it won't take long to tweak the drugs to find the right combo for him, and he'll be home to continue his treatment. Wouldn't that be the only Christmas gift you needed? Hugs from Canada, and prayers too!
Kathy :grouphug: :grouphug: :grouphug: :grouphug:

12-01-2006, 06:32 AM
more hugs and prayers Ann :hug:

12-01-2006, 08:12 AM
Hope Avery had a better night last night, Ann.

I think you are on the right track, home would be healthier for Avery and would assist in keeping the family members together while he fights this.

12-01-2006, 12:16 PM
Continued prayers and best wishes for Avery! :grouphug:

12-01-2006, 01:10 PM
I'm sorry Avery was sick the other night Ann. Hoping he is better today and gets to come home. Praying for him and you and your whole family every day honey! :grouphug:

12-01-2006, 03:12 PM
Continued prayers. :grouphug:

12-01-2006, 05:48 PM
Oh, I DO hope Avery will be able to be at home soon. Nothing like the comfort of your own surroundings. And have I mentioned that I just LOVE his name? I do!

12-01-2006, 08:49 PM
Oh my...guess what!?!?!?

They are going to release him...probably tomorrow afternoon! Saturday!

They were talking Monday but are now saying tomorrow! They are loading DS&DIL with binders and pamhlets and instructions and phone numbers...and a visting nurse will come too,and he'll be back to the hospital Tuesday for OP chemo....but they (and we) are so looking forward to him being home...

I know the prayers and support of all of you, all our wide network of extended family and friends, has given strength to Avery and his family, and will continue to do so......... :thumbsup2

12-02-2006, 06:02 AM
Ann!!! That is absolutely fantastic!! :banana: What a little trooper Avery is, I am so pleased he is doing so well. God bless his little heart! :grouphug:

12-02-2006, 01:21 PM
Just stopping by to see if we had word that Avery came home. I know that being in the hospital is hard. I'm so glad that they decided he'd do okay at home. The holidays in the hospital are rough for grownups. I'm sure it's even worse for a little guy.

God bless him. I'm still praying.

12-02-2006, 02:21 PM
Wonderful news!!!! I hope that things go smoothly with the transition to home, and that Avery continues to get stronger each day. :wizard:

12-03-2006, 12:37 AM
So glad to hear about Avery. Will continue to keep him and your family in my prayers.

Mackey Mouse
12-03-2006, 02:11 AM
I am so glad they are releasing him Ann.....it must be such a boost for him to come home to his family and you all will take such good care of him..

Hugs to you all....

12-03-2006, 07:05 AM
Did Avery and company make it home yesterday, Ann?

12-03-2006, 08:12 PM
Avery's home!
They came home late last night...his morning blood draw didn't have the levels they wanted to see, so they kept him for another transfusion and they didn't arrive home until about 9 pm.

Today was an adjustment day. His little sisters were thrilled that mom dad AND brother were all home. :thumbsup2 Avery slept well last night but as today progressed seemed a bit bummed that being home does not necessarily mean he is not still sick, and still needs medicine and rest and liquids. But they had a good day. We saw them tonight for a bit, we had done a run to Target and the grocery store to get some stuff they realized they needed as they got settled in today. Real hugs feel good. Still hate seeing my little guy so sick, but it was good to see them getting settled in at home.

Coincidentally, my mom got released fromt he hospital in Massachusetts, back to the nursing home, late yesterday afternoon too. SO...I'm trying to take it all as positive...this week will be better than last! :)

j's m
12-03-2006, 08:59 PM
:yay: Glad to hear they're both home.

I can understand poor Avery thinking he's coming home so he's going to feel better, too. Here's hoping this week he continues to progress and feel much better. Being home should also make it not so scary for him.

Glad to hear your mom is out of the hospital, too. Just keep repeating, this week will be better and things are looking up. :goodvibes

12-03-2006, 10:43 PM
Glad to hear Avery is home!!!

12-04-2006, 07:57 AM
Yippee!! :Pinkbounc :Pinkbounc

Glad he's home!!

12-04-2006, 08:02 AM
I am so glad that your little sweetie got to come home. Hopefully it will make it all a little easier for him.

Do you think it would cheer him up to get some cards in the mail? I know that my boys would love to make one to send him. If you think he would like it PM me.

I'm still praying for you all!

12-04-2006, 04:17 PM
Ill be saying lots of prayers for Mr. Avery!! I know two young adults that had ALL as children. Im happy to report both are doing great, one is recently married and living a great life and the other a gorgeous redhead across the street from me comes home from college for the weekend about once a month and its always a joy to see her!
Hope you folks have a great holiday and that Avery gets better and better with every passing day.
Tell DIL that she needs to get with a support group of other parents from the hospital. My neighbor has been cancer free for prob 10 yrs now and her mother STILL is VERY CLOSE with the other mommies from the hospital.

12-05-2006, 07:23 PM
ilovejack02...I did recommend to DIL that she investigate support groups. I know myself from my breast cancer treatment that the support of someone who has gone through or is going through it, is an immense help. She has a couple of individuals that have gone through this that she can contact but so far no formal "group". But then again, she has not had time to go through all of the volumes of papers, pamphlets and so forth that the hospital gave her. Perhaps there is info there because it IS a large regional facility and I'm sure they have programs. So far at home she's been busy getting organized with a big calendar and the necessary/new household supplies as well as actual care of Avery. I'm thinking maybe when she is at the hopstital for the Outpatient treatments she may have a little time to read and investigate the non-medical services available. It is so nice to read of success stories like your neighbor! :banana:

Avery did well today, he had a spinal tap and IV chemo, and another bone marrow biopsy to check his levels after 1 week of chemo treatment. He was looking forward to Chinese food for dinner after getting home :) His platelet count was a little lower than they wanted to see so he had a transfusion as well. The low platelets put him at risk for infection, so that is a concern, with a compromised immune system. We hope his side effects from this dose of chemo will not be as severe as last week and pass quickly. One more step in the journey :thumbsup2

Thank you all again for your thougths and prayers!!

12-05-2006, 08:55 PM
I am glad that Avery is home. Prayers and hugs that he will get stronger every day. Dartmouth Hitchcock is great. You may already know this, but Irving Oil Co. is offering the gas vouchers. We go to Dartmouth Hitchcock often and those vouchers have been a tremendous help for us.

12-05-2006, 11:25 PM

I like the sounds of his course of treatment so far. My DH actually has an appt on Tuesday for his monthly platelet donation, so he'll be thinking of Avery while he's on the aphoresis machine.

You know I do a good amount of volunteering with the Jimmy Fund. Just say the word, and I can drop an email to one of my contacts, and get you guys in touch with some support groups. Don't hesitate, OK?

You're in our thoughts and prayers here.


12-06-2006, 06:30 AM
Continued prayers and Hugs Ann!!

12-07-2006, 09:54 PM
Continued prayers for Avery that his treatment will be completely effective and that he will stay strong as he fights. He has many people lifting him up in prayer and I hope you can feel our support and very best wishes! :)

12-08-2006, 10:11 PM
Well....we had some good and some not-so good news today. The not-so good was that Avery had a little nausea/vomiting last night as a result of Tuesday's chemo, went to bed early, but awoke very early this morning with a lot of bone pain, in his backa dn ribs and then his hands. He was also running a little fever which they needed to watch, it got to within a degree of the 100.5 that would require him to be back in the hospital for anitbiotics and observation. Fortunately the fever stayed on the low side of the trigger point and they got a prescription called in for tylenol with codiene. The best news today though was the results of his bone marrow and spinal fluid analyses Tuesday. The spinal is still all clear and the bone marrow numbers dropped significantly in the one week of chemo! :thumbsup2 From 80% to 4%!! 5% or under is technically considered remission so that is great news. He will still have 2 more weeks of this chemo but can skip the spinal tap and bone marrow draw next week. If thinsg maintain or improve further then he switches after the 3 weeks to a different kind of chemo to target any leukemia "hiding" in other parts of the body (other than the bone marrow or blood). His immune system is not in good shape, so they are very concerned about exposure to bacterial/viral infections.
But in this day by day battle, I think think today's results are overall ont he plus side for my brave little guy!! Thanks again for all your thougths and prayers!!

12-09-2006, 08:25 AM
Ann, that's wonderful news! If your precious little guy doesn't have to go through the spinal tap and the bone marrow aspiration this coming week that's great! The less pain the better for children suffering any horrible disease! Thanks for sharing your news. Hopefully the nausea/vomitting won't last. And if he changes the chemo drugs that will be the end of the side effects from the chemo. Great news, thanks for sharing. We'll keep the prayers coming. :grouphug: Kathy

12-09-2006, 09:57 PM
This has not been a good day for my little guy.

He is back at Dartmouth. He was in a lot of pain and still unable to keep anyting down and his temp actually dropped. below normal...
this afternoon they said to bring him in. DIL took him up and DSS is home with the girls.
He maybe has some kind of viral or bacterial infection, maybe his kidneys, or maybe some kind of seizure. He's in pedi ICU. There seems to be some uncertainty as to what is actually going on, as this is not "normal" chemo side effects. So frightening. :sad2:

12-09-2006, 10:16 PM
I am so sorry to hear he is back at the hospital. I will say an extra prayer that they quickly find out what is going on and get him back home. :grouphug:

12-10-2006, 12:24 AM
My heart sank when I read the latest Avery update. I will say a prayer for him tonight.

12-10-2006, 07:40 AM
Oh, Ann, I am so sorry Avery is back in the hospital and having these problems. Hoping the docs can get this under control ASAP.

Continuing to pray for Avery here.

12-10-2006, 07:59 AM
Thank you for your prayers and thoughts. It was a very rough night, for Avery and DIL at DHMC and for all of us at home. The word this morning is they seem to think the infection is in his PICC line or near where it enters his body. They are getting a certai bacteria when they take blood through te line. They have analyzed the bacteria and are giving him a targeted antibiotic. They hydrated him and gave him his other meds which he could not keep down yesterday. They took blood ebery 2 hours through the night, and the poor kid was hallucinating for awhile too though that has subsided. His potassium levels are dropping and sodium rising which I guess are good signs. He is finally sleeping after being up since 1:00 am Friday morning.

12-10-2006, 08:20 AM
I am sorry to hear that he had a rough night. I sure hope they get the infection under control and he can rest and start feeling better.

12-10-2006, 08:23 AM
It is very hard to hear what Avery and your family is going through. I hope his sleep is healing for him.

I am relieved the docs sound like they are onto where the infection originates.
I cannot imagine how hard it was for your DIL to see Avery in this distress. I am glad they were watching him so closely at home and got him to the hospital when they did.

Time for more good news.

12-10-2006, 08:58 AM
Wow, Ann, catching up. First good news, then bad. My thoughts and prayers are with you all. I hope Avery's feeling better soon. :grouphug:

j's m
12-10-2006, 09:26 PM
Ann, more prayers for Avery and your family. I hope the antibiotic works soon, and he can come back home. :grouphug:

12-11-2006, 08:33 AM
Avery was on my mind a lot this weekend. I've been praying for your sweet boy.


12-11-2006, 03:47 PM
I don't have good news today.

Poor Avery is just wracked with infections and complications. They have called DS to come to the hospital to be with DIL and Avery.
They were flat out told that he might not make it through this.

I'm really having trouble praying to a God who could let this happen...but on my SIL's advice I'm trying to connect in my mind directly to Avery and tell him all the reasons why he should fight to stay here with us.

12-11-2006, 03:58 PM
I'm so sorry Avery is not doing well. I'll double my prayers for the little guy and for you and your family. I don't understand why little kids get sick, it just doesn't make sense. Please know you are in my thoughts.

12-11-2006, 04:17 PM
Ann, my mother and I are saying this prayer for Avery. I'm posting it here for anyone else who might like to say it also. :grouphug:

Prayer to St. Jude for our Child who is Sick

St. Jude, the glorious apostle faithful servant and friend of Jesus, the patron of hopeless cases of things despaired of, pray for our child who is sick and so miserable. Make use we implore you of this particular privilege accorded to you, to bring visible and speedy help where help is almost despaired of. Come to our assistance in this great time of need, that I may receive the consolations and succor of Heaven in all my necessities, tribulations and sufferings, particularly to help our child to get better from his illness and to give him good health and to guide his path, and that we may bless God with you and all the elect forever. I promise you, O Blessed St. Jude, to be ever mindful of this great favor, and I will never cease to honor you as my special and powerful patron and to do all in my power to encourage devotion to you. Amen.

12-11-2006, 04:38 PM
Ann, I am devestated that Avery is so sick. I will say the wonderful pryer Linda posted many times tonight for Avery and your family. I am with you in spirit.

Your SIL's advice to concentrate on Avery is good, very constructive at this moment.

12-11-2006, 05:16 PM
Thank you for posting that Linda... it helped me to focus a little.
I thank you all for your kindness and prayers.

12-11-2006, 05:34 PM
I am so sorry about this recent news. How difficult this must be for all of you. :grouphug: I am beseeching God to rid Avery's body of that infection and to restore his health.

12-11-2006, 05:38 PM
:hug: If there was any way that I could take the pain that you are feeling away, please know that I would. :sad1:

Many many prayers are being lifted for little Avery and for all of you.
Special prayers are in my heart and will be lifted up to God for you, dear friend.

I know right now that it seems like God has abandoned Avery and your family, but please know He has not. I just believe this with all that I am. I do not understand why this has happened to Avery, but I am just praying that God's grace and mercy will be apparent in these next few days.

George and I love you and John dearly and we are hurting along with you. :grouphug:

12-11-2006, 05:42 PM
Ann, I am just devastated for your family. I'm praying honey. I just said a prayer to St. Jude as well. Keep us posted as you can. :grouphug:

12-11-2006, 06:11 PM
Ann, I am so sorry he has to suffer like this. Sending prayers and hugs for all of you.

12-11-2006, 06:22 PM
I'm going to pass the word to everyone close to me, to pray hard and often for Avery and your whole family. I'm so sorry he's not doing better.

Just remember, God doesn't send trials our way. They come on their own. He just uses them to help us grow. He'll be there to hold you in His arms through the good and the bad... and Avery too.

Please keep us informed. I'll be thinking of you.

Mackey Mouse
12-11-2006, 06:55 PM
I just got home from taking Tom to his oncologist on the Cape and was catching up on Avery.. we will be starting chemo closer to home.

I have just said the prayer to St. Jude and am printing it out to keep by my computer....I wish I had more faith, you know what I mean.. like some of you have this great faith, (my Tommy has this kind of faith).....I am sitting here teary eyed and saying why?? I do not understand this little boy having to suffer..

Ann, I will continue to pray for Avery's recovery....I have Tom on the case too, please know we are here for you and keep us in the loop.

Hugs to you, keep strong....I can only imagine what you are feeling right now, my heart aches..

12-11-2006, 07:01 PM
I am so sorry Ann that Avery isn't doing well! I can't even find the words to express myself. But do know that we are thinking of you here & Avery and praying

Mickey's sunshine
12-11-2006, 08:10 PM
Ann, I am at a loss as what to say but I do want you to know I am saying extra prayers and good thoughts. I am sending out truck loads of good vibes, prayers, good thoughts...etc....Avery's way and to you and your family.

You fight this little man, you have sisters to pick on for many many years to come. You have to date crazy girls and then get married to a sweet one. You hang in there Avery!!!!!

Love you Ann, please let me/us know if we can do anything else for you.

Dan Murphy
12-11-2006, 08:52 PM
Ann, Christine just let me know how Avery is doing. :hug:'s Your little grandson has been in my prayers since learning of his illness some time back. He will overcome this current setback. :hug:

Ann, Linda, I too have a real devotion and belief in St Jude, over 35 years (long story). The tougher the hurdles the more St Jude seems to intercede. I have said his prayer many times, and now again. Please do not despair, have hope.



12-11-2006, 09:16 PM
Dear Ann: I am so saddened to hear about Avery not doing too well. I hope your family will be strenghtened by all the prayers being sent your way, blessed with love and encouraged with hope. Barbara

12-11-2006, 09:59 PM
Prayers for Avery and all his family :grouphug:

Mackey Mouse
12-12-2006, 06:27 AM
First place I look when I come on......I do hope that Avery had a better night and is doing better this morning.. I am continuing my prayers and will wait to hear from Ann..

Good morning everyone who is following this post with lots of prayers for Avery..

Hugs to Avery.....

12-12-2006, 06:47 AM
I have no news this morning.
I will post as soon as I know anything.

Thank you all for the prayers and thoughts....it is uplifting and strength-giving.

12-12-2006, 06:48 AM
Avery is on my mind throughout the day Ann!
Prayers continued....

12-12-2006, 07:32 AM
Oh Ann,
I am so sad to read this news today. I am going to call my church right now and get Avery on our prayer list. Stay strong and know that all your friends here are praying!


Mickey's sunshine
12-12-2006, 08:18 AM
Still praying..... hope everyone was able to get some needed rest. Stay strong little man. :goodvibes :grouphug:

We are here for you Ann!

12-12-2006, 08:29 AM
No news is good news, Ann. :goodvibes

I felt so badly yesterday, imagining how you must be feeling. Please don't lose hope or faith. Here's something else that might help you focus: during the night I pictured Avery wrapped safely in the arms of the Blessed Mother and your whole family bathed in God's healing light. Lots and lots of love surrounding you all. Try to find a quiet place to go even for a few minutes and concentrate on something like this. The relaxing and healing effects can last throughout the day. (Sorry it's not much, but it's at least a little something to grasp onto.)

I'm hoping things start to look better for Avery today. All of you (and your caregivers) are very much in my thoughts and prayers today. :grouphug:

12-12-2006, 08:43 AM
Ann, Linda, I too have a real devotion and belief in St Jude, over 35 years (long story). The tougher the hurdles the more St Jude seems to intercede. I have said his prayer many times, and now again.
I would like to hear that story sometime, Dan. My mother is also a strong believer in the powers of St. Jude, St. Anthony and others. She still sits with her rosary and ancient box of prayer cards every night and prays. I tell her she must have a direct line because it seems her prayers are almost always answered.

12-12-2006, 10:21 AM
An email just went out to everyone on the prayer chain at my church. We are praying.


12-12-2006, 12:12 PM
Thank you all.
There is little to report since last night, as Linda says though I suppose no news is good news. Things have not gotten any worse and Avery is quiet and comfortable today. There is a terrible infection in his system though, and so hard to fight it with his immune system so compromised from the leukemia and start of chemo. They are still awaiting cultures as to what exactly it is but have been told it doesn't really matter at this point, all the alternatives are life threatening in his current state. There is always hope, and I'm praying for his immune system to kick into gear and battle back from this.

I thank you all from my heart for your prayers for Avery and my family, and your kindness to me.

12-12-2006, 12:33 PM
Ann, I'm so, so sorry that you are going through this with little Avery.

This is a powerful place for prayers...I've seen it over and over again. Avery will come through this. Hang in there. :grouphug:

12-12-2006, 12:46 PM
I've lined up an army of prayer warriors. I told six friends last night, who in turn passed the word on to some of their friends. We're all praying without ceasing. My mother listened to the story, prayed and passed on the word. Then she called me back. She said she had a real feeling of peace and believes that Avery will pull through this. I found that comforting and thought I'd share that with you.

I once read an account of a near-death experience where the person "saw" prayers going up to heaven. She said each prayer was like a beam of light shining up. Some were strong beams and others were smaller. Know that heaven is being illuminated with many, bright beams of light for Avery.

Please let us know if you hear anything.

12-12-2006, 01:27 PM
Ann, we saw a miracle with my father from the power of prayer. I will pray that you all start to see an improvement with Avery.

12-12-2006, 02:29 PM
Continued prayers for Avery. :grouphug:

Mackey Mouse
12-12-2006, 02:35 PM
Hugs and prayers to Avery.....c'mon now beat that infection, you can do it.

I know how hard it is though when their immune system is compromised, but Avery you can do it..

Hugs to you Ann...hang in there.....we are a powerful praying group.

12-12-2006, 06:34 PM
No further news at this point.

The prayer volume from my extended DIS family alone is absolutely amazing.....there are individuals and groups all over the US and Canada praying for him.

12-12-2006, 07:24 PM
:grouphug: for all of you today.

More prayers being said each and every hour. The scripture on mind throughout last night and today was from I Thessalonians 5:17. "Pray without ceasing..."

And this is just what we have been doing for Little Avery.

My co-worker Gwen said to me today when I gave her an update..."Avery is our superhero and we will focus on that and his healing." Right there in the middle of the department we shared a hug and a tear and hope. And the beauty of that is until later today she had never even seen a picture of little Avery. He is touching so many people.


12-12-2006, 07:55 PM
Well...I have good news, in that I have no bad news! :thumbsup2
We just talked to both Avery's dad and mom. It was wonderful to talk to my DIL, it has been days. She is an amazing young woman. SHe's asking ME if I'm OK!! And she extends her thanks and awe at all the prayers and thoughts and kindness being shown to our family.

Avery's condition is still grave, but there are some positives. The infection seems to not be spreading as rapidly. His kidney functioning is improved, the liver not so much but still better than yesterday. He is resting more comfortably depsite all the tubes and such. He watched a little TV today and commented about SpongeBob's toasted marshmallows looking like cotton balls. The fact that he spoke about it with the tube down his throat amazed his daddy more than the comment itself.
He also was concerned that both DS and DIL were there with him ...and said "If you are both here, who is taking care of my sisters?" He was relieved to hear that his Nana, DIL's mom, was with them.

DIL says Avery needs some of his sister Delaney's spunk for this battle, she is such a spitfire and he is so laid back. I told DIL to tell him that he needs to go to WDW and show Kadie the ropes since she wasn't born when we went a couple of years ago. DIL said when we get past this we are ALL going to WDW for a MONTH!! :thumbsup2

SO, his condition is still grave, but they are talking about the next few days being critical, as opposed to yesterday when they they didn't seem to be offering much hope for there even being a next few days.

So we shall continue to pray and send Avery our strength and positive energy...and again I thank you all so much for yoru support :grouphug:

12-12-2006, 10:43 PM
His kidney functioning is improved
Excellent news, Ann. He's moving in the right direction. :thumbsup2

Jake & Crew
12-12-2006, 11:11 PM
Just found your thread, catching up and praying through it. I felt the power of prayer, literally felt a peace wash over me, with my battle last year. I am passing that peace and strength to Avery, you, S & DIL, the sisters, the nana, your husband ! You all need and have it.

Most of all push that anger away, it drains too much all positive energy straight to little Avery, he needs all the power he can get!!!! :sunny:

Mackey Mouse
12-13-2006, 04:28 AM
So glad to hear the news Ann, it is a step in the right direction. And the praying continues for Avery at my house and everyone else here posting on the thread. It is a good thing...

Now Ann, take some time for you today, please. Put your feet up or go take a brisk walk or even better, buy yourself something nice that will make you happy.. I am worried about you too...

Hugs to you guys....this is hard enough to do under normal circumstances, but around the Holidays it can be even tougher.....take care of yourself and your immediately family, we have Avery on full time praying care here...

Dan Murphy
12-13-2006, 07:37 AM
Uplifting and upbeat news, Ann. Good to hear. Continued prayers, good wishes for Avery, and all of you. :hug:'s

Mickey's sunshine
12-13-2006, 08:00 AM
Good Morning Ann. Some encouraging news about the kidneys! I am continuing to pray for Avery. I agree with Marsha, try to take a little time for you today. I bet you and hubby are stressed beyond the max.

Ok Mr. Avery, you keep fighting this, get strong.

prayers, good thoughts and love coming your way. {{{{hugs}}}}}

12-13-2006, 08:25 AM
Ann, I am glad to hear that the news is better today. I agree with the others, take some time for yourself today. You need to take care of you while you are taking care of others.

12-13-2006, 08:30 AM
Very glad to hear good news after all the scary info from the weekend. I hope the kidneys continue to improve and that the liver turns the corner as well.

Thanks so much for posting the news. I feel like I am in this fight with your family, Ann. I think of you guys throughout the day.

12-13-2006, 09:06 AM
I'm so glad to see some good news! I know it's a small step, but it's a small step in the right direction. :thumbsup2

I continue to pray and I'll call my friends and family that are praying with the latest update. Keep us informed.

12-13-2006, 10:57 AM
How's the little guy doing today, Ann? :tinker:

12-13-2006, 12:28 PM
glad to hear the good news about the kidneys improving. More good wishes & prayers coming Avery's was as well as the whole family!!

12-13-2006, 12:47 PM
Hi Ann: I hope things will improve even more today for Avery. You are a strong support for your DS and DIL but don't forget about ANN. It is very difficult to have faith sometime but faith can place a candle in the darkest night. Barbara

12-13-2006, 01:50 PM
Also hoping every day, a bit better, until ALL better.

Thoughts and prayers with you ALL.

12-13-2006, 03:32 PM
Continued prayers and hugs. :grouphug:

12-13-2006, 03:33 PM
Just checking in on little Avery. I hope today is a better day. I'm still praying for a Christmas miracle!!!

12-13-2006, 04:56 PM
Today has been a good day, in that there have been no changes.

The docs continue to express concern that even if his body develops some white blood cells to fight the infection itself (instead of just keeping it from further spread with antibiotics), that effort by his body can result in strain on his ability to breathe, heart function, etc. :confused3

So we will continue to pray for strength and energy.

I have told them that there is literally an army of well wishers, prayer groups etc, all over the continent and beyond that are sending their positive healing energy. They are humbled and grateful.

12-13-2006, 05:17 PM
Thank you for the update. I will continue to pray for all of you.

Mackey Mouse
12-13-2006, 06:10 PM
Ann... hugs to you and thanks for the update...

We are still praying here, c'mon Avery fight those nasty bad guys....

Interestingly Tom's oncologist referred to the cancer cells as terrorists in your body hiding out and attacking when you least expect it with no warning....grrrrrrrrrr

Mackey Mouse
12-14-2006, 04:49 AM
OK. just checking and yes I was up at 5:00am, not sleeping well.

Anyway, Ann.. prayers for Avery this morning and for you too..

How did he do overnight?

12-14-2006, 05:09 AM
Ann, I am hoping that there is some improvement today.

Mackey, remember to take care of yourself!

12-14-2006, 05:21 AM
Still praying Ann. Drew asks me every morning how Avery is doing. When Avery gets better you can tell him about all the new friends he has. :grouphug:

12-14-2006, 06:07 AM
No word this morning yet...usually they wait until mid-morning after the doctor rounds to let us know how he's doing.
He had a lot of fluid build up yesterday and needed a little more pain med to stay comfortable but all the "number" and "count" stuff stayed stable.

As for me....I had a dentist appt yesterday afternoon and have to go back today to have work started on 3, yep THREE crowns :faint: Heck only 1 tooth was bothering me :confused3 It is interesting though how perspective changes things...normally I freak at the thoguht of any dental work beyond a cleaning - but ..."whatever" :goodvibes

12-14-2006, 07:21 AM
Ann, he is one adorable little boy. I hope you get your Christmas wish.

12-14-2006, 07:57 AM
....So we will continue to pray for strength and energy.

I have told them that there is literally an army of well wishers, prayer groups etc, all over the continent and beyond that are sending their positive healing energy......

East coast of Canada...keeping all of you in our thoughts and prayers :grouphug:


12-14-2006, 07:57 AM
checking in on Avery.... hope he's feeling better today. The picture is adorable Ann :hug:
continued prayers......

12-14-2006, 08:06 AM
What a sweet picture. :goodvibes Continued fervent prayer from my corner of the world for this precious little boy. :)

Mary Jo
12-14-2006, 08:10 AM
Hi Ann,

Mackey Mouse just told me about little Avery. I will include him in my prayers, and ask that our prayer group at work add him, too.

Many special blessings to you and yours from Southern California.

Mary Jo
12-14-2006, 08:31 AM
Hi again,

Here is the response from my coworker Dee Dee (who has been given the special gift of beautiful prayers)

Yes MaryJo, I will send it to our prayer group and I will keep little Avery and his family lifted up in prayer.
"May the Lord do a mighty healing work in Avery's little body"

Mackey Mouse
12-14-2006, 08:40 AM
Love ya MJ...

Thanks to those who are praying and sending the word out for more prayers for Avery...

Ann, update when you can, we are here for you..

12-14-2006, 11:17 AM
The picture in your sig is adorable..i hope you get your christmas wish...know that Avery and your family is in my prayers

12-14-2006, 12:02 PM
A basically uneventful night last night...and this is OK.
Doctors rounds this morning indicate teeny tiny changes in the right direction in the white blood cells, but they warn that if/when the WBC do gear up to do battle with the infection it will cause increased pain ...and breathing difficulty since there is a lot of infection in the chest wall. But they're taking it a step at a time and continuing to focus on the positive.
I am in awe of DIL and DS in their strength in coping with this....

thanks again for your prayers and good wishes

12-14-2006, 01:10 PM
Little steps in the right direction is great. I am glad to hear it. :)

12-14-2006, 01:30 PM
I am so glad that he is moving in the right direction. We'll be praying until he is home with his sisters again!

That is the sweetest picture I've ever seen! It is so nice to have an image of him in my mind as I pray for him. I sure would love to give him a big hug and a kiss!!!


Mackey Mouse
12-14-2006, 01:47 PM
I am so glad to put his sweet face with my prayers......

That update does sound encouraging, although I do hate the pain part.....I hate when they are in pain...including my own sweetie..

Anyhow, still praying, update when you can... this is a powerful thread..

12-14-2006, 01:51 PM
New to this particular board...adding my prayers for Avery. He is adorable.

12-14-2006, 02:11 PM
Prayers said for Avery and for you Ann. I wasn't even aware that this board existed until I saw one of your posts on the Community Board.

Mickey's sunshine
12-14-2006, 04:15 PM
Still praying here Ann. :goodvibes

Avery, keep fighting little man.

12-14-2006, 06:52 PM
Continued prayers. :grouphug:

12-14-2006, 07:58 PM
That pic, as cute as it is, is from 4 years ago :)
Here is a more recent one...last Easter!

We had some more hopeful news today, that the good type of WBC are still slowly increasing which means his immune system is trying to kick into gear. This could bring some new concerns of course with an increase in pain levels, but we are trying very hard to focus on just the good news and continue to send Avery only healing positive thoughts and prayers!!

Thank you again for all your continued prayers and support, it is so deeply appreciated by my whole family.

12-14-2006, 08:25 PM
It is so heart warming to hear a bit of good news. I am focusing on sending good vibes to Avery tonight so he can sleep without pain.

I agree with you, your son and DIL are amazing. It must be taking every ounce of their strength.

It sounds like they have an ever growing cheering squad around the world. I hope they continue to feel the prayers, hopes and well-wishes.

Thanks for posting the pictures. He is truly a beautiful child.

12-14-2006, 09:22 PM
He is such a handsome little man!!! I am so happy that he is still moving in the right direction. I sent an update out to the prayer chain at my church today. We are all still praying! :hug:


12-15-2006, 12:27 AM
I just checked in tonight to see if you'd heard anything. I'm focusing on the good news and praying for him to have the strength to power through the pain. With all our prayers behind him he can do this! He's got a terrific support group!

Thanks for the picture. It helps me to "see" who I am praying for. Now I have a face to attatch to the name. He's darling! I'll keep praying and I'll pass on the latest update.

12-15-2006, 01:42 AM
Oh, Ann , he is adorable! I didn't know this board was even here til I saw you mention it on another thread or I would have been here sooner. I am glad for a bit of good news tonight and will continue to keep Avery as well as your whole family in my thoughts and prayers. (((HUGS)))

Mackey Mouse
12-15-2006, 05:26 AM
Cute baby, adorable boy.....you all make beautiful children up there in New Hampshire...

We need to get that smile back on that face and as fast as we can and without too much pain... So let's go Avery, you show them how tough New Englanders are and kick those bad guys out of your body.......

Hugs to you Ann and we are praying here... thanks for keeping us updated. I am so happy to see some of our original Disers coming to this thread to support Ann and her family..

Go Avery!!!!!!!!

12-15-2006, 05:39 AM
Keeping that cutie in my thoughts and prayers. :grouphug:

12-15-2006, 06:31 AM
Sending more prayers from down here in Louisiana. Started at 5 am.

Go get 'em, Avery!!!

12-15-2006, 06:57 AM
very handsome boy Ann :goodvibes
thanks for sharing that picture!!

continued prayers...

12-15-2006, 10:35 AM
Firday morning report: there was more pain/restlessness issues during the night but after 3 am Avery slept better and this morning's labs showed some more positive results...the neutrofils (sp?) which are the infection fighting white blood cells have gone from 50 Tues to 150 yesterday to 300 this morning!! :thumbsup2 This is excellent as far as infection fighting, but the resulting swelling and pain issues are likely to increase as well.
What a fighter he is, and what power we are seeing with all the prayers and positive energy he's getting!!

12-15-2006, 10:48 AM
That is good news today, Ann. Will be praying for his pain and swelling to stay under control. Hang in there! :)

12-15-2006, 12:06 PM
I have been busy doing all sorts of last minute things before we leave tomorrow, but I wanted to check in to see if there were any updates. I am so thrilled he is improving! I will continue to keep him and the whole family in my prayers.

Also Ann, if you think it might brighten his day, I would be more than willing to send him a postcard from Mickey. PM me sometime today with an address, and I will shoot one out early next week so he will get it by Christmas.


12-15-2006, 12:07 PM
He's a fighter! Way to go Avery! :cheer2:

What great news. I'll keep praying for those numbers to keep creeping in the right direction and for pain and swelling to be at a minimum.

Mackey Mouse
12-15-2006, 01:19 PM
I am praying for infection fighting, but am also praying no pain as well.....I hate the pain part of it, it breaks my heart.

Hugs Ann, you take care of you too.....more prayers coming from Cape Cod..

12-15-2006, 03:13 PM
:thumbsup2 :thumbsup2

12-15-2006, 03:29 PM
uuughh...the roller coaster continues...
this afternoon Avery was taken to have his central line removed and it will be checked if this is where one of his pesky infections ( a yeast fungus?) has originated, it has not responded to the anti-fungal meds he's been getting. They will put in 2 PIC lines in his arm again, which confuses me since they thought maybe the orginal PIC line was where an infection took hold when he landed back there last weekend.

Apparently the new lines can't be used for several hours after insertion...meaning no IV meds, dangerous in his fragile state...I am just praying so hard he fights through this...

12-15-2006, 04:21 PM
We have been praying since 2:15pm and will continue. :grouphug:

Mackey Mouse
12-15-2006, 04:27 PM
Ok....praying hard here....I know that infection can get in through those lines...darn it all, that is how Tom ended up with cellulitis, of course, they will not admit that but other nurses have told me that is how bacteria gets in..

So, if they put in new pic lines, they cannot use it right away.. Can he take medication by mouth because they do have to get the meds, right?

Oh Ann.. hugs to you, and to Avery, please God take care of him....get him off this rollercoaster and back to some normalcy so that he can fight this disease.

12-15-2006, 05:05 PM
Just praying so hard for all of you tonight - I have a feeling that Avery is going to turn the well-corner very soon. It is heartbreaking to see a child so ill when we as mothers, grandmothers are supposed to make everything "better" for our little ones. Barbara

12-15-2006, 05:13 PM
I'm praying even harder. Hang in there Avery. You can beat this!

12-15-2006, 08:40 PM
You guys are still in my prayers..you can beat this Avery!

12-15-2006, 09:22 PM
I am so rooting for Avery's little body to fight that infection.

I hope he and his parents get a break soon and the tide turns with the infection so they can breathe easier.

Like Merry, I find the pictures help me focus my prayers on that little guy. It is shocking that a child who looks so very healthy in those pictures could be dealing with this now.

12-15-2006, 09:29 PM
His procedure went well and we are hoping for an uneventful, restful night. :thumbsup2 It will take about 30 hours, which is this time tomorrow night, for them to determine whether the yeast thing was in the central line (that would be good since it's now out) or in his blood system itself (not good because the anti-fungal meds don't seem to be working)

Marsha I do not know how they handled meds for the few hours he couldn't use the new lines :confused3

THanks again everyone for your prayers and thoughts :grouphug:

Mackey Mouse
12-15-2006, 10:00 PM
God love this sweet boy.....thanks Ann for keeping us updated...this is the first place I come each morning and before I go to bed. Praying for Avery tonight as I fall asleep and hope that he has a good night with no problems. Ann, I hope you are sleeping too, stress is not good for any of us, so please do try to rest when you can and eat too....

Hugs to you all and night..

12-16-2006, 06:20 AM

I am thinking of you early this morning and hope that you had a restful night. Praying today for positive news and a sense of peace and strength for you all today and each day that comes. We are holding you all close in our prayers and our hearts and sending only positive thoughts your way. Even in our evening dinner prayers, Savannah has added Avery. Although many miles separate us, please know that we are with you in spirit.

:hug: Teri

12-16-2006, 06:39 AM
Today we have a small u-haul and a few helpers coming to move our larger furniture....yes in all this craziness we are moving across town to our new home....sort of piecemeal since it is just across town. (thank goodness ;) )

No news is good news throughout the night!! Usually it is mid-late morning when we get an update after morning rounds so I will update as soon as I can.

Again we are so uplifted by the support from you all!! :grouphug:

Dan Murphy
12-16-2006, 06:53 AM
Such darn cute pictures, Ann, both the older one and the new one. What a handsome little guy.

Good to hear the updates; prayers and good wishes continue for Avery, Ann.

Take things easy on yourselves with all the work stuff.


12-16-2006, 06:56 AM
Ann, looking forward to positive news today. Wow, you are one strong lady moving in the midst of this. Sending

Mackey Mouse
12-16-2006, 07:50 AM
Checking in to see how Avery is doing.....update us when you can and try not to stress yourself about the move, it will get done....

Hugs all around and prayers this am for Avery....hope you had a good night and are on the mend today..

12-16-2006, 11:55 AM
Avery has begun to get breathing assistance froma respirator (PAP) today.
A doc told them DS and DIL this morning that in his current condition they could be looking at this critical stage being at least 2 weeks- maybe as long as 6 weeks, and they are feeling rather overwhelmed at managing it all....Avery's illness, the girls, implications for work and life in general. :sad2:

So it all makes trying to manage a move not very important at all ;) and we are all just taking it moment by moment.

A brain-addled faux pas on my part just happened...DD calls from school awhile ago... and in my head for the last 2 weeks I have had her coming home for Xmas breaks on Monday, the 18th. (she has her car ar school and it is under an hour away.) SO anyway, she said she was getting dropped off at the student parking lot to get her car and bring it back to the dorm. So me thinking she's headed out off campus later to the mall or movie or dinner says.."Oh where are you going?" Uuuuummmm HELLOO mom, I'm coming home for break!! OOPS! :blush: Guess no favorite home-cooked meal was planned...LOL

12-16-2006, 12:11 PM
Oh my goodness. My heart is breaking for all of you. Hugs to all of you. More prayers on the way.

12-16-2006, 03:38 PM
A brain-addled faux pas on my part just happened...DD calls from school awhile ago... and in my head for the last 2 weeks I have had her coming home for Xmas breaks on Monday, the 18th. (she has her car ar school and it is under an hour away.) SO anyway, she said she was getting dropped off at the student parking lot to get her car and bring it back to the dorm. So me thinking she's headed out off campus later to the mall or movie or dinner says.."Oh where are you going?" Uuuuummmm HELLOO mom, I'm coming home for break!! OOPS! :blush: Guess no favorite home-cooked meal was planned...LOL
Thats funny Ann...but I'm sure you're forgiven ;)

Continued prayers for Avery......

Mackey Mouse
12-16-2006, 05:04 PM
Checking in on Avery.....read the update and thought to myself how do you carry on with the everyday of it and maintain your job and the rest of your family... God Bless your daughter and her husband, they must be so worn out. Hugs to all and most especially to Avery, lots of prayers and healing hugs coming your way..

I am with Safetymom.. my heart is breaking here too.. Ann, hang in there, you are one strong woman and I am praying for you too...

j's m
12-16-2006, 09:25 PM
Ann, I'll continue to pray for Avery to fight the infection. He is such a beautiful boy, it's so hard to look at that face and hear what he's going through. Just keep the faith that all our prayers will work. :grouphug:

12-16-2006, 10:58 PM
Ann, continued prayers for Avery and for strength for your DS & DIL, and 2 little sisters @ home.

Mackey Mouse
12-17-2006, 05:09 AM
Checking in this Sunday Morning.. Avery is on my mind quite a bit.. I do hope he had a peaceful night and that the doctors are doing everything possible to help this sweetie..

Ann, hope you too got some sleep......Grandmothers need their rest so that they hold everyone together.....

Update when you can, I know usually late in the afternoon.. prayers going up now...

12-17-2006, 07:24 AM
Checking in. We are in Mobile, AL. , where we spent the night. I said many prayers for Avery in the car. He is in my thoughts and prayers. I will keep checking for updates. Take care of yourself with being pulled in so many directions.

12-17-2006, 08:10 AM
Good morning!
DH spoke to DS around dinnertime, he sounded much better than when they spoke in the morning. DS and DIL were upset at the thought of the respirator at first, but Avery seems more comfortable with it assisting his breathing...and they were hoping all three could get a little mroe rest last night without the constant worry and monitoring of the balance between pain relief meds causing shallow respiration.

DH and Megster and I had a nice dinner together at the new TGIFridays near here. We then braved the Xmas shopping crowds and went to the Mall where I used some coupons at JCPenney and Linens N Things and got excellent deals on bedding for our new king-sized bed. (I'd had sticker shock earlier when looking at king bedding :faint: ) Nothing like a real good bargain to lift the spirits. Then we got a good night's sleep....DD is actually STILL in bed...I could see the from the light from her room that her laptop was still on after midnight when I went to sleep....she's still on "dorm hours" of course ;)

So...here's hoping to an uneventful Sunday for little Avery, maybe some improvements in labs after a good night's rest....

12-17-2006, 08:13 AM
I am glad to hear he had a restful night. I am sure it felt good to you to go out for awhile. I am keeping up the prayers and hoping for continued good news.

12-17-2006, 08:16 AM
Ann, as I read your post, I am in absolute awe of how the parents & family who have to deal with all of this, do so .....
continued prayers for the little guy and for his parents & famliy! My heart really goes out to them :grouphug:

Mackey Mouse
12-17-2006, 09:51 AM
Ann.. I love reading when he is doing better. I know they were worried about the respirator, I have to admit it caused me to pause, but the alternative of shallow breathing from meds is not good... I am glad he is breathing better and got some sleep... once he is on the mend, they will get it out of there and he will do fine.. I feel it..

12-17-2006, 10:03 AM
Thank you for the update. I hope that they were able to get some much needed rest.

Continued prayers.

12-17-2006, 10:58 AM
On balance, very good report this morning...the neutrofils dramatically increased overnight and all his other labs look very good as well. The only downside is the blood cultures would indicate the yeast thing is systemic in his blood, not what they were hoping (hope was it was in the central line or one concentrated "ball" in his body somewhere but no sign of that in all the scans and such). However, on balance ....a pretty much uninterrupted night of rest for all three of them :thumbsup2 and his little body seems to be getting in gear to do more battle.
Hoping for an uneventful day today......

Mackey Mouse
12-17-2006, 11:27 AM
OK.. so systemic in his blood....what do they do for that? Hit it with stronger antibiotics???? I am learning here as well as praying.

I am glad that the other labs look good and hopefully we can get rid of this yeast thing....is this common??

Keep the faith and more prayers going out there for Avery.. Ann, you are doing great, thanks for keeping us in the loop.

12-17-2006, 01:25 PM
OK.. so systemic in his blood....what do they do for that? Hit it with stronger antibiotics???? I am learning here as well as praying.

MY understanding is they hit it with anti-fungal meds as opposed to antibiotics.
His little body has so much going on that its slowly building resources are probably confused as to where to focus! (that's MY "md" opinion --"mom doctor") ;)

Many many thanks Marsha ,and all of you , for the prayers and support!! :grouphug:

12-17-2006, 04:00 PM
I added Avery to our prayers at church today, as well. And I keep sending him messages to hang in there. I'm glad his little warrior cells are kicking in. I'm starting to feel like a cheerleader. :cheer2: Go Avery, go! :cheer2: :teeth: I'm going to send a small package to your house next week for him. Maybe as he starts feeling better it will lift his spirits.

12-17-2006, 07:06 PM
Hi Ann,
I have a message for your from DS5 (he is sitting beside me dictating)....
I love Avery, and I'm going to pray for him every day! I want him to be really, really happy. I hope he will be better soon. And I think he would like this :bounce:



12-17-2006, 07:07 PM
Thank you for keeping us updated..your family is in my prayers still..i check this thread several times a day!

12-17-2006, 08:03 PM
More prayers for Avery...Please God, heal this little child. May tomorrow be a good day for him. :)

12-18-2006, 08:56 AM
Another night of some healing and rest....his lab numbers look very good this morning :thumbsup2 and he and his parents had good rest last night

thanks again for the continued prayers!!

12-18-2006, 08:59 AM
I am so glad for the positive news this morning!!! Keep fighting sweet boy!!! :cheer2:

12-18-2006, 09:00 AM
Ann, that is wonderful news.

12-18-2006, 09:40 AM
Continued prayers for continued improvements for Avery. Prayers too for the caregivers that they may find the right treatments to cure your precious little man.

Mackey Mouse
12-18-2006, 09:41 AM
Hi Ann..

Love hearing the lab numbers are good..

Avery, you are doing great, buddy, keep up the good work..

Of course, more prayers each day..

12-18-2006, 10:44 AM
Ann, I've been following this thread, and want you to know that Avery and your family are in my thoughts and prayers.

12-18-2006, 11:53 AM
im glad to hear some positive news this morning!!! hope for some more g ood news for your family!

12-18-2006, 03:38 PM
TruBlu...what a little sweetie your Cam is!! :hug:

Hi Nancy, nice to "see" you and thank you!

And to all the rest of you too of course.

I think we are in a "no news is good news" phase but DIL said today the docs keep saying he will be "sicker" :confused3 as the white blood cells multiply and swarm to attack all the bad guys. I'm going to take the attitude that they keep giving very very worst case scenarios and send even more prayers and positive energy out for his recovery!!

12-18-2006, 05:44 PM
Hi Ann,
I have a message for your from DS5 (he is sitting beside me dictating)....
I love Avery, and I'm going to pray for him every day! I want him to be really, really happy. I hope he will be better soon. And I think he would like this :bounce:



Oh my goodness this has me in tears. What a sweet boy. :grouphug:

Still praying Ann. :grouphug:

Jake & Crew
12-18-2006, 08:58 PM
Just want to let you knoe I am still praying for Avery, his parents, sisters, aunts/uncles and of course grandparents. What a rollercoaster for all of you hope you feel all the positive energy and peace that the people on this thread are sending you. There are many here who pray and never (or rarely) post ..... Keep up your strength, hope and faith.

I also pray everytime for your granddaughters, I know how scary this is for ALL the children in the family. Positive thoughts beaming up north to all of you! :thumbsup2

12-18-2006, 10:31 PM
More prayers for you, Avery and the rest of your family.

12-18-2006, 10:47 PM
continued thoughts and prayers for Avery, his parents, sisters, and of course for you and John, Ann. (((HUGS)))

12-19-2006, 05:11 AM
continued prayers for Avery & family ..........

Mackey Mouse
12-19-2006, 07:43 AM
Hugs to Avery and family, hope he had a decent night and there are some more improvements coming his way..

Keeping the prayers coming..

12-19-2006, 04:17 PM
Just checking in again. More prayers for strength and to take away pain headed that direction. Hope he was able to rest last night. Our little warrior needs rest to fight the good fight. Update us as you are able.

How is the move going? It's good that you can do it in bits and pieces, but I know that has to be added stress. Take good care of yourself.

12-19-2006, 06:27 PM
Thank you all!

It has been another quiet (quiet is good) day so far. Another fairly restful night last night.... No unexpected developments. Higher white blood cells have resulted in increased swelling and a little more pain reaction but with pain meds and fluid management measures it sounds like they are on top of this. DS and DIL have instituted an incentive program giving chocolate to doctors with good news and expanded that to include chocolate for dcotors with no BAD news. ;) Comforting to see that they are maintaining grace and humor in such difficult circumstances.

If the next few days result , he can continue fighting the infection and there are no unxpected setbacks, the doctors sound like they will admit to the possibility of real recovery so that we can get back to the business of leukemia fighting! :thumbsup2

Gotta keep the faith :grouphug:

12-19-2006, 06:36 PM
How is the move going? It's good that you can do it in bits and pieces, but I know that has to be added stress. Take good care of yourself.

We accomplished a good amount over the weekend and DH has arranged for cable (TV and internet) installation later this week. I told him I am not going anywhere until I have my internet ;)

12-20-2006, 06:23 AM
We accomplished a good amount over the weekend and DH has arranged for cable (TV and internet) installation later this week. I told him I am not going anywhere until I have my internet ;)
can't blame you for that Ann... I wouldn't either ;)

12-20-2006, 08:04 AM
How's our boy today Ann?

Mackey Mouse
12-20-2006, 08:10 AM
Just checking on our boy... loved the chocolate story and glad he is holding his own..

Keeping him covered in prayers.. hugs to you Ann, hang in there..


12-20-2006, 09:10 AM
How is Avery today? Continued prayers being sent your way!!! :angel: Glad to hear your S & DIL are keeping their spirits up... I can't imagine how difficult this must be for them... my heart goes out to them for sure. They are blessed to have you though Ann... Continue to keep us posted ~ we're all praying for his continued recovery and cure! :grouphug: :grouphug: GOD bless!

12-20-2006, 11:58 AM
Avery had a little fever overnight but it was gone with old-fashioned blanket removal and cool cloths...no tylenol needed even. Some med adjustment going on that caused it they think. Avery's hair has started to fall out....methinks this is going to bother parents more than Avery initially...but DIL has announced a "best hat" contest for when Avery gets out of the woods and back to fighting the leukemia. :thumbsup2
This morning's great news is that the last blood sample for the yeast infection has grown nothing in 48 hours. Before this, it was growing in less than 30. This means at LEAST it is slowing down...again the right direction.
Other lab numbers are showing improvement or holding steady as well...more good news!

I am so thankful for the prayers and positive energy being sent to my brave guy.... :grouphug:

12-20-2006, 01:13 PM
Thanks so much for the update! That is great news about the blood sample!!!! :thumbsup2 Looks like you've got a little fighter on your hands! And what a great idea your DIL had about the hat contest... I'm betting he'll find that fun ~ and I'm sure everyone will be wearing silly hats. Keep the good news coming Ann! We're pulling for little Avery! GOD bless.

Mackey Mouse
12-20-2006, 05:57 PM
Well that is good news tonight..

I just read this to Katholyn, Nativetxn, who called from Texas and she wanted to tell you, Ann, that you have her good thoughts and prayers and so does Avery...

From me, more prayers, and hugs to you... sounds like we are going in the right direction...

12-21-2006, 05:11 AM
So glad to hear some tests are coming out with good results. Hang in there Anne...there are a lot of prayers being said for Avery and his family. We'll all be praying for you guys for the long run.

12-21-2006, 03:36 PM
great report on Avery's infection fighting neutrafils...a great increase, and his swelling is ever so slightly decreasing.....still waiting to see if any yeast in the last culture ...but another day of little improvements and no major setbacks!! :thumbsup2

Mackey Mouse
12-21-2006, 05:00 PM
Sounds great Ann... way to go Avery....keep fighting and we will handle the praying...

Hugs to you Ann!!!!

12-21-2006, 05:09 PM
Prayers are still being said in MN for Avery Ann. Glad to hear about the improvements.

12-21-2006, 05:18 PM
Ann, that is wonderful news!!! I am so happy for all of you.

12-21-2006, 06:34 PM
Great news today Ann and every good day is a step closer to a healthy little boy. Barbara

12-21-2006, 06:41 PM
:cheer2: Way to go Avery! :cheer2:

12-21-2006, 08:06 PM
Great news, Ann. I hope the nurses got some chocolates too. :teeth:

12-21-2006, 08:47 PM
The nurses generally get the most chocolate Linda...they are wonderful there.

NO chocolate for the urology resident this afternoon (actually DS says the resident owes them chocolate!) who saw Avery (for the first time)this afternoon and made some very grim pronouncements about the swelling in his "area" of expertise, included some horrific survival statistics on a procedure that would "probably" be needed soon...then he left. After a few scarey hours which included ultrasound and getting the resident's superiors in for a look...all is actually A-OK at this point and his overall body swelling is going down so they will just keep an eye...as they have been doing :rolleyes:

On balance though....a very GOOD day despite the scare (roller coaster!!) THis mornings labs were great...those neutrafils were at their highest level yet, over 1000, and no yeast has grown in the blood culture for 72 hours!! Prior samples were showing it within 30 hours or so. These are great signs, that he is fighting and his body is giving it a battle :thumbsup2

thank you again for keeping him in your thoughts and prayers!!

12-21-2006, 08:49 PM
What encouraging and hopeful news today, Ann, I am so pleased to hear it! :goodvibes

12-22-2006, 05:45 AM
Yikes! Sorry you had such a scare by that resident. Glad to read that things are looking up though :thumbsup2 :grouphug:

Mackey Mouse
12-22-2006, 07:17 AM
Yup... some doctors just love to deliver that scary stuff and then they disappear......grrrrrrrr, he deserves to get coal in his stocking for Christmas scaring everyone like that..

You know you can speak the truth and not use shock value to tell what is going on.. really, there are ways to say it without killing the people having to hear it. I am speaking from experience here and those meanies, I call them that, they are no longer allowed near my husband... sorry, that is the way it is..

Now back to Avery... you go Avery, you are doing well and fighting....good for you. To Mom and Dad, sounds like you need to replenish your chocolate but no chocolate for that resident.. grrrrrrr again.

Hugs Ann, thanks for keeping us in the loop.. we are still praying here.

I do not know if I know the answer to this or not, but wondered after I read something, you cannot see him right now? and when do you they think you can see him, if you are not now? Sometimes it is good to see your nana......for both people...

Just thinking out loud this am.. hugs

12-22-2006, 07:21 AM
Praying for Avery and your family. :daisy: