Author Topic: Unexpected TFS update  (Read 932 times)

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Offline kimnat

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Unexpected TFS update
« Topic Start: September 21, 2006, 08:26:12 PM »
Dear Everyone,
 
I hadn't expected to need to send out an update so soon.  But things have changed dramatically and really shook our world.  But we're doing mostly ok right now.  I took Andrew in for his first chemo treatment yesterday only to find out that the mass remaining in his neck has grown more in the past 3 weeks and the previous protocol is no longer applicable for him.  He has 10 cm of bulk mass in his neck (cancerous lymph nodes & inflamed tissue).  The former protocol only allowed for bulk mass no greater than 6 cm.  One of the nodes has gone from 1 cm to 3x3 cm.
 
Then more tests needed to be conducted for this newer protocol, including another chest x-ray, pulmonary tests (breathing to check his lungs) and a bone marrow biopsy.  He was admitted into Fairfax Hospital this morning and the bone marrow and x-ray were done.  Thankfully both are fine.  The bone marrow test was done under deep sedation, and they went in two spots on his lower back into both hips.  Marrow was removed and tested for Hodgkins and is fine.  
 
Chemo begins tomorrow.  This is also another major change.  Instead of 2-3 mo. of chemo, 3 cycles, he will now have to undergo 4-6 months (likely 6) of chemo, 4-6  3 week cycles.  Radiation may also be necessary.  
 
His spirits are good right now.  It has been a busy day and a rough one for mom!  He will be in the hospital, room 567 (green building) until Sunday or Monday.  Chemo will be the first three days of each cycle, then again on the 8th day.  Prednisone still for the first whole week.  
 
Please forgive my choppiness.  I came home to spend time w/ the girls and put them to bed.  At this moment, Dan is at the hosp. w/ Andrew and a friend will come over soon to stay w/ the girls so I can go back there.
 
Please pray for Andrew's health during this treatment.  He will have to go on homebound, so the school issue is no longer an issue.  Pray that he will have a rapid early response to the drugs.  Also pray for all three kids' emotional well being.  They're really having a hard time right now.
 
I'll try to write more as we progress.  I was told I can access my email in the hospital library.  So I will try to do so tomorrow.  
 
Thanks again for all your prayers!
 
Love,
Kim

Offline rileyn

  • Posts: 1577
Unexpected TFS update
« Reply #1: September 21, 2006, 09:48:14 PM »
Kim,

As I've told you before, I also battled with a young child (my niece) through 14 months of cancer fighting.  Remembering the emotional roller coaster from one day to the next brings chills to me just thinking about it.  You appear to be as strong as any child could hope for from a parent while dealing with this.  It's amazing the strength that we find when we need it the most.  Yes, this update sounds like a setback, but you just have to keep fighting.  I know you will.  Thanks again for the update and we will keep praying for Andrew.

Offline NatsAddict

  • Posts: 4095
Unexpected TFS update
« Reply #2: September 26, 2006, 10:14:22 PM »
My prayers are with all of you.  

I don't know if it helps, but I'm now a 32-year survivor of osteosarcoma.  It was much more difficult on my parents than on me.  Prayer, patience, friends and humor will go a long way.  One of my memories from that time is that Brigg Owens had written a book, Over the Hill to the Superbowl.  A family friend knew Ritchie Petibone, who had all the Redskins autograph a copy, and then he brought it to me in the hospital.

Offline ColtonWillems

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  • "You have no integrity"
Unexpected TFS update
« Reply #3: September 27, 2006, 09:20:09 PM »
Kim,

As always my prayers are with you. It is horrible when bad things happen to great people. We on this board know that TFS is a strong boy-obviously gets it from his parents- and he'll be able to get through it. If there is any way that I could do more than pray for you, I would love to. In any, absolutely any way I can help you can email me at adamgav68@aol.com or private message me on this board. Best wishes, the thoughts and prayers of me and my entire family are with you and yours. You'll get through this, and be stronger than ever.

Offline kimnat

  • Posts: 7023
  • Special Event Co-Chair w/ Erica!
Unexpected TFS update
« Reply #4: September 27, 2006, 10:18:49 PM »
Thanks guys!  I do appreciate all your offers and words of encouragement.  If I think of anything I need, I'll be sure to let you know.  We've let some folks know that restaurant gift cards (carryout) could come in handy for times when we don't have a meal lined up and wind up with last minute appts. or grocery, Walmart/Kmart  or drug store gift cards for incidentals that come along the way.  But that's about the only thing I can think of that anyone can really do right now.

Andrew is very strong indeed!  I'm supposed to give him a dose of neupogen (grows more white cells) into a catheter in his upper arm on a daily basis.  It stings a bit.  So, I tried to numb it by icing it for like 30 minutes tonight.  He was so hyped up about it hurting (needle never touches him), that I wound up calling the oncologist and was told to skip tonight and call the doc tomorrow.  It's kinda hard to use a needle with a moving target.  arggh!  It's so frustrating.  You tell him that cancer isn't like a cold that will go away on it's own and that if he gets a fever when he gets down on his white cells he'll be in the hospital for a week or so.  And it doesn't do any good!  I'm still torqued from having to fight with him for an hour tonight (no joke), but I'm also exhausted!

Oh, Calsgr8 is sending a letter to MLB or the Nats to try to have a player visit the big little guy.  Despite the hour long battle, he's starting show signs of fatigue from the chemo.  He's not running around as much or as hyperly driven during the day.  We gave him a BIG playhut tent for his birthday over a year ago and he's set it up in the front yard complete w/ a blanket and pillow along with books, markers and paper.  It's really sweet!  Looking at that I feel so awful for him.  But gosh!  He's a strong, strong boy!!

Offline CALSGR8

  • Posts: 11194
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Unexpected TFS update
« Reply #5: September 28, 2006, 05:34:19 AM »
Here's what I put on the other NATIONALS FAN FORUM.

KIM, look on the thread under General discussion regarding Hometown Heros.  I said that TFS is my Junior Home Town Hero!  

To all that care about KimNat. I'm sending the following letter to the Nationals. I'm not sure if anything can be done this late in the season but its a shot! Since I can't post photos, you'll have to go to NationalsForum . com under a picture thread to see it. I'm also blanking out address info and other stuff that she may not want published on the message board.

Washington Nationals Baseball Club
Attn: Community Relations/Player Appearances
RFK Stadium
2400 East Capitol Street SE
Washington, DC 20003

To Whom it May Concern:

With only a few days left in the season, I hope and pray that you can grant this request for a player appearance. I participate in the Fan Forum on the Washington Nationals Website. Among the many posts on that board are ones from someone with the username KIMNAT in regards to her son, referred to as TFS. I am writing on Kimnat?s behalf and of the many people on the message board who have almost adopted this family as if it was their own.

Kimnat?s son was recently diagnosed with Hodgkins Disease. He is a brave young man of approximately 7 years old. He?s already had surgery for lumps in his neck. As you can imagine, as with many kids with Cancer he?s been through a multitude of tests. Because of this he has to go through months of Chemotherapy at _____ Hospital and will have to have it for 3 weeks straight and off and on the next month 3 weeks straight for the next 6 Months! This illness has been very hard on entire family for not only does Kimnat have a son, but also daughters who are worried about their big brother.

Kimnat?s son is named _______. He goes by TFS for the time he once flushed a toothbrush down the toilet (Toothbrush Flushing Son) but I digress. I?m attaching a picture of _____ that I downloaded off another message board that allows pictures. He?s a cute little boy, isn?t he?

<picture would go here>

If you could send a NATS player to sign some autographs and maybe bring some souvenirs for ______ and the Girls, I really think it would lift this family?s spirit.

I?ve looked at your request form but this doesn?t apply because I don?t think a request on the behalf of fans and NOT a Non profit organization. I?m trying to include all the information you need. Its difficult since I?m not the parent of this child but just a fan (among many) that care about this family.

What is needed is a player, with some pictures and NATS Souvenirs for _____, the girls and probably some other kids who may be getting Chemo that day. I know he has Chemo on Wednesdays.

If you do a home visit, you would have to write Kim and see if that is alright with her. Her address is stated above. I?m not sure of the procedure of who to contact over there for a Hospital visit. I?m sure you?ve made similar visits to Hospitals before.

Here is the address for ______ HOSPITAL AND DIRECTIONS FROM THE WEBSITE.

<copied directions from Yahoo Maps to Hospital>

Contact Kim for any arrangements you need to make. The fans of TFS hope that the NATIONALS can DONATE their time and efforts to this very worthy cause. I look forward to hearing back from you or at the very least, Kimnat posting that she has heard from you regarding this request on her and many fans? behalf.
Sincerely,

I know its kind of cryptic but I'm trying to keep some info private. If any of you have any "connections" and can help in any way, please do so. You can write Kimnat by clicking on her name. You can write me the same way.