Information about Hannah (topic renamed) 3/3 update

[prism {*RgR*1*}]

*rents a cross-country bus*

Cali to the Carolinas - - Last stop, Pittsburgh Children's Hospital
Everyone roll up your sleeves and prepare for the needles

[-Alice-]

I wish I could do it woobie, but I'll sent that blood from here directly in a private plane... My brother agreed to join me to do something about it, we will ask in one of the hospitals here and witha  few doctors friends of us about that matter... She has to be ok! She has a life to live....

[Taryn]

I have sent a note to Hesprit about the want to help out... ~smiles softly as she slips out quietly, thinking about the beautiful girl named Hannah~

[Shylina Marie]

as  parent that completely supports the childrens miracle network and the make a wish foundation.  I am gonna jump on the band wagon here and let you know that there are so many, so very many children, and teenagers that you can help with the simple gift of donation, be it blood , money , or Time.   as a parent of a child that is still classified as having a life threatening condition, I can't express the gratitude of the parents and the staff, let alone the children that recieve the benefits of these donations.  fortunately for us, my daughter is right now healthier than she has been in her life and upon our last visit to the cardiologist was told that one day she will be able to become a mother.  He gave her the one wish she could possibly have...... the ability to be NORMAL.  thats what these kids want the most... is just normal. we all have to live a life within limitations some of us with more limits than others... so from a parent...... THANK YOU for doing anything you can.... no matter how big or how small it may be.

 jenn and I had talked about it.  She qualified for the make a wish foundation, but she said mom.. I'm gonna live no matter what..... so I am not gonna let them spend money on me when they can give someone thats not gonna be around as long as I am  the gift of a lifetime.. the gift of those memories with their moms and dads.   What jenn doesn't know right now is that her dad and I are gonna give her that gift..... she's only asked for one thing.... so come christmas of 2008... you guys are just gonna have to be without me... because we are gonna go spend christmas in Paris.... that is her dream and by god she is gonna get it

[Shylina Marie]

and another quick note..... yes they can give platelets..... they want good live cells to work with as well... so most times they want to harvest 48 hours in advance so they can easily put the cells in stasis.  but this is the thing..... anyone.... anywhere can give the gift of blood.... all blood types are needed but most especially those rare ones and the most commons...... contact your red cross.... donate in that childs name and give them the hospitals name.... alot of time the familys incur alot of costs due to the face that  blood and processing blood and its components is so expensive.... I have the same 10 donors for jenn when she has to have a procedure.... and trust me... not having to pay for 10 units of blood cut the cost of  an open heart surgery way down.  so contact your local and let them know you are donating in a childs name... they work through the childrens miracle network too and that can help ease some of the burden off that family

[Hesprit of Turia]

Hi everybody!  First I apologize for missing the updates here on the WM board, and thanks to Taryn for making them and letting Me know about the posts that have been made.

I finally got a chance to talk to Hannah's grandmother today for a little more of an update ... although it's not complete, it does tell us a little bit more of what's going on.

At this point, Hannah is back home from the hospital. They have stopped the chemo for now, to give her body time to rebuild the platelet levels. Hannah's fever has gone up and down a little bit .. obviously, it's down enough to let her go home, but they do have to keep an eye on it and return to the hospital if it jumps again.

I'm not sure what other treatments they may or may not be using right now, but at least she is home so that's a step in the right direction!

As I'm reading all of the talk of blood and platelet donations, I'll be honest.  I'm not sure exactly what the status of Hannah's need for this is right now.  Since she is home now, I'm under the impression Hannah is not using transfusions right now, although I'm not certain if they will be doing so again.

What I would suggest, though, is for all of those who want to be able to help, consider doing exactly what you're thinking of, but locally.  Children with leukemia are all over the country, and yes, the world.  Not only the blood donations but as someone else mentioned, marrow donation is a big need everywhere.  Maybe you can't help Hannah, but maybe there is someone else.

As an organ transplant recipient Myself, I know first hand what it's like to be told that what you need is now available.   I know that whomever might benefit from your generosity will never be able to thank you, and knowing Hannah and her family, I honestly believe that they would be just as happy to know that somebody, somewhere, is being helped in Hannah's name.

Besides, as Hannah herself said early on, "there are other kids who are more sick than me"  It's a thought that really doesn't hit home, until it comes from someone this young.

Thanks for all the interest and concern, everybody!

[Taryn]

would try to donate or be tested, but with the medications running through my system, I doubt they would allow me to... so for now, I am content to keeping her in my thoughts and prayers, and keeping a candle lit for her... ~smiles softly~ and you're welcome Hes..

[Shylina Marie]

Taryn I am in the same boat due to all the meds and med changes I have had..... so I can pray....

[Hesprit of Turia]

Absolutely, prayers and good thoughts are always important as well.

[Hesprit of Turia]

Hannah has been progressing, I'm happy to report.  As I said before, she has been home now for a couple of days and, although I just found this out last night, her numbers did increase to the point where they were able to give her a double chemo treatment during her last check.

At this point, they continue to watch Hannah for fever or any other signs of problems, but she's at home where she belongs.

If I understand correctly, she has about another week, possibly two, on the scheduled chemo rotation, after which she will be given a period of several weeks with no treatments scheduled.  For those not familiar with it, this is apparantly a standard treatment plan, so it seems they have chosen not to alter the plan itself, which I'm taking as a good sign.

It also means that, barring any other complications, Hannah and her family should be able to make their trip to Disney World without incident.

What I found interesting was that, despite the things that have been going on so far, Hannah's biggest concern right now is to insist that her mother confirm she will get to "be on the big yellow bus next year!"

Like most kids her age, it seems that Hannah is determined to be just like all the other kids, and she's not ready to listen to even the possibility of her not riding the school bus to school when it comes time to start in September.  And, for the record, the doctor's at Children's Hospital, have told Hannah's mom to go ahead and get her registered.  They already know there will be days she is not able to go to school because of her condition .... she will miss days, but the doctors say that there is no reason not to plan for everything to be as normal as possible.  They can make adjustments later as needed, but plan for normal now.

[Taryn]

~sighs softly~ yes, I am very well aware of the treatments for all sort of cancers, it runs abundant in my family, both sides and I have watched friends go through it as well...

~smiles brightly at Hannah's biggest concern~ if I were her age, I think I would be worrying about that as well, as it is the most important thing next to Disney World.. ~nods lots~

Hes, give her a big huggle from me... thanks ~smiles~

[RAGNAR]

The single most fascinating thing to me is no matter what happens to the body, the spirit lives on.

The body can be ravaged by so many things, torn apart and wasting away, yet the strength of heart and spirit is beyond touch of these things. Only the person themselves can allow the spirit to be hindered in its zeal and determination.

In time, even the body can reach the end of it's days, yet the spirit lives on forever.

For those who believe, there is eternal life, but even for those who hold no such belief, the spirit still lives on in those who remember and cared.

At times... even that unconquerable spirit, that determination is enough to continue on in the face of adversity. I have seen it. All of us have seen it. Many of us have even faced situations where there seems to be no hope nor escape from impending doom. Yet somewhere a small spark begins. The drive, the determination to accomplish that which seems so far beyond our grasp.

It is this determination.... so pure... so strong... that can make all the difference.

I believe Hannah will ride that big yellow bus.

[Hesprit of Turia]

Hi folks.  Yes, I renamed the topic for two reasons .. it's more recognizable for those who have been following this, and so it's easier to see when new info is added.

There is not a LOT to report at this point, which is actually a good thing.  Hannah is still doing reasonably well after her difficulties not long ago.  She is currently on a 5 week break from chemo (standard part of the treatment schedule) and is as excited as all get out.

The "Make A Wish" trip to Disney World is coming up.  Obviously, as I think everyone understands, I'm not giving any exact dates or things like that, but the trip will take place during this break from chemo.

I have to put in a plug here for "Make A Wish" since I've found out more about what all they provide.  For example, when I heard they were sending Hannah to Disney World, I figured they would pay for the flight, pay for the tickets for a day, maybe two, probably pay for reasonably inexpensive hotel accomodations .. things like that.

Get this ... this is My understanding of what "Make A Wish" is providing .. and this is their standard:

• Airline travel to Florida (the whole family, in this case four people)
• Car rental upon arrival
• Accomodations (for a full week) at a "resort" owned and operated by the Make A Wish Fondation.  (This facility is ONLY available to the children and their families, who are sponsored by MAW ... which means more privacy, people who are both understanding, and prepared for any difficulties which may come up)
• Passes for the park (I don't know how many days for the park itself, or if any of the other parks are included, but from looking at this list, I'd suspect they are not skimping on these either)
• Money for food/meals (This even includes extra money set aside specifically for TIPS!! )
• Money for other, assorted needs and or entertainment (they are even including money for camera film and film development!)
• Medical needs and concerns (The Foundation ensures that the local medical facility is aware of the patient's name, their history, direct contact with the patient's home doctors and hospital, etc, just in case there is any problem that arises ... so the facility is ready without having to rush to gather that information in an emergency)

I don't even know if this is a complete list, but let's face it, this is way more than I would have expected to be provided.  I know that Hannah's mother, when finding out what all was provided, made the statement "OMG, I feel guilty accepting all of this!"  (Keep in mind, this is a woman who was well into her third or fourth year of Nursing School, at the top of her class, and had already been asked by hospitals where she had done clinicals, to be sure to come and apply with them as soon as she graduated ... and because her daughter needed her, she wound up dropping out of the classes.  Her sacrifice was nothing, it was just what she needed to do, but seeing others do this, she has a hard time understanding)

The Make A Wish Foundation provides this type of service to children all over the country, and as you can see, when they fill a wish, they do it up right.  They try to make certain that neither the child, nor the family, has to worry about anything at all, at least for this short time.  As most of us, I've known about "Make A Wish" for years, always thought it was a decent program.  Now I'm impressed, and they have moved near the top of My personal list of charities (of course, for personal reasons, the "Gift of Life" program, supporting transplantion services, is at the top)

Anyway, a little bit of update, a lot of "plug" but that's what I've got for now.

[Ash]

I sat reading this and it brought back many memories. M" Brother in law some 9 years ago was diagnosed with this though a different from as well, given a less than 50 50 survival chance. They found his also by " mistake " as he had hepititus as well.. if not for that we would have found out to late as his was moving quickly though his body, noone knew.

After months of treatment that I wont even go through the effects it had on his body, He was told at the tender age of 17 that he IF SURVIVED this, would never have children, life would never be the same for him as for everyone else.

That same said young man is now a survivor of  this form of cancer, after 5 years he was considered Leuk. free. He is the proud father of 2 children and yes they are his chuckles.. his body that doctors said would never be the same is in better shape from working out than most 16 year olds. And currently He is working on his singing career.

I guess the reason I felt  I should write this is to give alittle living proof that God is out there, in whatever form Yyou see Him or by whatever name Yyou call Him. He can cure this, He did for M' Brother in law. Doctors no matter how great they think they are are not working alone.

Also, sometimes when life gives us such curves, it is good to see the spirit moving through Us.. as I have read through this passages.. truly Wwe are not alone.

Queen Ashura
Proud Wife of King Drago
Emaine Macha

aka Gina

[RAGNAR]

How is Hannah doing?