|
Matthew's Fight - Never Give Up!!!!!!!! Matthew was diagnosed with Acute Lymphoblastic Leukemia (A.L.L.)on November 27, 2000. After 3 years and 2 months of chemotherapy, Matthew officially completed chemotherapy on January 26, 2004!
Sadly, Matthew relapsed in December 2004. We begin this fight and journey once again. I am thrilled to share that on July 20th, 2007 Matthew finished chemo for the second and hopefully last time! On October 10th at 4pm we received the horrible news that Matthew had relapsed again, this time in his Central Nervous System. Our world has been shattered once again. We are fighting for remission and then on to a bone marrow transplant. My son is a fighter and one of the strongest young men that I know.
Normal Counts:
Hemoglobin 13.0-16.0
Platelets (Plates) 150,000-450,000
White Blood Cell(WBC) 4,500-13,500
AGC (ANC) 1000 or greater
Matthew’s Poem
By: Alicia Heimann
(Nursing Student at St. Mary’s College)
Cancer you say
What is that?
How can it be?
I am only eight.
That is still young you see.
My throat hurts.
That is all.
Nothing else.
Please explain this to me.
Mom says it is called,
Acute Lymphoblastic Leukemia,
ALL for short,
Believe me I would rather be sick because of a sport.
The needles hurt.
What more can I say?
You give me poison,
And expect me to stay?
Alright, almost through.
My counts are up.
I feel brand new.
I did it!
I won!
The cancer is gone!
Mom calls me her victorious one.
Life goes on.
It seems so new.
Back to school, homework, sports and play
As normal kids do.
Uh, oh.
Not feeling so hot.
Mom, I think I need to see the doc.
He looks me in the eye.
Tells me the solemn news.
The cancer is back.
No time to lose.
I look at mom.
Scared and confused.
Am I going to die?
What do we do?
It’s not fair.
I do not see.
Is this a merry Christmas for me?
Harder this time.
Why is that so?
I have already taken such an extraordinary blow.
More needles.
I can hardly wait.
Hurry up already,
Give me my birthday cake.
Thirteen years old.
A brand new teen.
I am ready to fight,
To get my cells clean.
More chemo and drugs,
Some old, some new.
Just make sure,
The barf bucket is in view.
No hair on my head.
That is no bother.
Because neither does my awesome brother.
I love my mom,
Family and friends.
They all support me,
With out-stretched hands.
Trips to the hospital
Are no fun.
But, I do get to see,
The nurses I love.
Some days good.
Others bad.
That depends on the meds I have had.
Strong to the end.
Not a weak pup.
Continue to fight.
Never give up!
If you would like to help with the extremely high cost of Matthew's Bone Marrow Transplant, please send donations to:
St. Charles Borromeo, Attention: Margaret Sorg
4916 Trier Rd
Fort Wayne IN 46815
* Checks should be made out to: St. Charles Borromeo
* On the comment line please put: Matthew Fackler, account # 220.150.15
* If you desire a receipt/statement, please include a note requesting one.
**********************************************************************************************************
**************************************************************
Matthew’s Worldwide Prayer Chain
I had another idea……I know I know…another crazy Mom idea….
We get guestbook entries and emails daily with wonderful loving, caring people assuring us that they are praying for Matthew. I thought it might be interesting to see how far around the world Matthew’s prayer chain can go. So, I thought I’d try to keep track daily when a new person from a new location lets us know they are praying for Matthew.
So, starting yesterday (1/13/08) I’m going to keep track and place the list above. So pass the word to your friends and family far and wide…… “Please Pray for Matthew!”
1. Alabama, USA
2. Antwerp, Belgium
3. Arizona, USA
4. Arkansas, USA
5. Auckland, New Zealand
6. Australia
7. Baumholder, Germany
8. Barcelona, Spain
9. British Columbia, Canada
10. Buenos Aires, Argentina
11. Cairo, Egypt
12. California, USA
13. Changzhou, JS China
14. Colorado, USA
15. Connecticut, USA
16. Florida, USA
17. Focsani, Romania
18. Gent, Belgium
19. Georgia, USA
20. Great Western, Australia
21. Holland
22. Idaho, USA
23. Illinois, USA
24. Iowa, USA
25. Indiana, USA
26. Iqaluit, Nunavut, Canada
27. Kelowna, British Columbia
28. Kentucky, USA
29. Lankaran, Azerbaijan
30. Lima, Peru
31. Louisiana, USA
32. London, England
33. Luanda, Angola
34. Luxembourg, Europe
35. Lyons, France
36. Maine, USA
37. Manitoba, Canada
38. Maryland, USA
39. Massachusetts, USA
40. Michigan, USA
41. Minnesota, USA
42. Mississippi, USA
43. Missouri, USA
44. Montana, USA
45. Moscow, Russia
46. Nebraska, USA
47. Nevada, USA
48. New Hampshire, USA
49. New Jersey, USA
50. New Mexico, USA
51. New York, USA
52. North Carolina, USA
53. North Dakota, USA
54. Ohio, USA
55. Oklahoma, USA
56. Oregon, USA
57. Ottawa, Canada
58. Pennsylvania, USA
59. Rhode Island, USA
60. Saint-Brieuc, France
61. Sotogrande, Spain
62. South Carolina, USA
63. South Dakota, USA
64. Tennesee, USA
65. Texas, USA
66. Vannes, France
67. Vermont, USA
68. Virginia, USA
69. Washington, USA
70. Washington DC, USA
71. West Virginia, USA
72. Wisconsin, USA
*****************************************************************
Our NEW Address:
Arcadia Residential Suites
Attn: Nancy Vinson - Room 121
11180 DOWLIN DRIVE
Cincinnati, Ohio 45241
************************************************
Announcement:
We have MORE cookbooks!!! Our 2nd order of cookbooks has arrived!
If you would like one you can get one by doing one of the following:
• Greg has a box of cookbooks available at our house
• Contact Sandy by email at teamnevergiveup@comcast.net.
* Deb Roos has 2 boxes at her house.
• Pick up at the St. Charles Parish Office.
• Pick up at any SCRIP sale at St. Charles
Thanks to the kindness of our friend Dave Tester from Georgia, 100 percent of your donation will go to help with Matthew’s medical expenses, anti-rejection medicines, other medicines and living expenses while we are here in Cincinnati.
Thank you from our entire family……..
************************************************************************************************
Here’s to Matthew ….....By Tammy from New Mexico
Matthew’s just a youngin’
only 16 years of age
He’s been through more than most of us
Oh, how can he explain …
The trials that he’s conquered,
The efforts that have poured
through his veins and onward,
from the people on his ward.
We pray for you, oh Matthew.
We pray that you would be
the son that defies logic,
and defines humanity.
We pray your stable spirit
will prevail on through these fights,
We pray the Lord will guide you
and keep you through the nights.
We pray for something awesome,
something power, something free.
We pray these words to reach you
and touch upon your cheek.
Dear Matthew, you are held
in prayers around the earth.
Your story touches all of us,
and all of us have heard
the gentle voice of heaven
just a whisperin’ your name
for us to pray and honor
the call from God again.
To pray for all our neighbors,
To pray for peace and love,
and offer our thanksgivings
to the One who lives above.
Amen.
Journal
Thursday, May 15, 2008 11:41 PM ET
Day 111 – Update 3
The saga of the chair bed…….
The story started on Tuesday’s visit to room 517 here on the BMT unit. This silly 3 part bed has major problems. On the first night, 2 of the 3 sections worked and the 3 section was lying on the floor. I was too tired to whine so I curled up and slept on the top 2 sections. Today, we arrived to the unit in the same exact room and I just knew they hadn’t changed out chair beds.
Around 9, I tried to open the bed….no luck….told Nurse #1….she tried…no luck…she called Ling the PCA…she tried…no luck….eventually we were both lying on the floor pushing and pulling and laughing hysterically….no luck….she tried another way and the 3rd chunk of the bed crashed off the frame onto the floor waking Matthew who stared at us both lying on the floor laughing….no luck…she called maintenance…..around 10:30 Boris and Gomer arrived to fix the bed…..Boris mumbling about nurses not opening beds….Gomer pulling and yanking…Boris yelling at Gomer (in thick Russian accent) “NO NOT ZAT WAY”….Boris still mumbling about nurses not opening zee beds….Boris pulls trash can out of the bathroom….flips on the overhead light waking Matthew….puts the chair bed on its nose and balances it on the trash can….Boris still mumbling about poor Ling not opening the bed by herself….Boris (who is probably 77 years old) is holding this 40 lb chunk of chair bed by himself while Gomer is mumbling “watch your back man”…..Boris finally slams chunk into place….kicks trash can out of the way and slams the bed back on its legs …..waking Matthew again….THEN Boris begins to lecture ME on not opening the bed….so I said “well, if I can’t open the bed and the nurse can’t open the bed…who’s supposed to open the bed every night…and does this person bring mints??”……Boris was speechless…..as Gomer was leaving I asked “is this thing going to collapse tonight” ….he said “gee I hope not”……sigh…
Stay tuned to see if I wake up on the bed or on the floor……
Matthew is feeling really lousy. They gave him a cocktail of two non-narcotic drugs for his headache. He is still very nauseous and is now vomiting on top of everything else. Poor kid just feels horrible. I’m hoping now that Boris, Gomer, Ling and I are done with the chair bed that Matthew can get some sleep….at least until they come in to take vitals at midnight….big sigh…
Love,
The still trying to be Dynamic Duo
************************************************
6:41 PM
Day 111 – Update 2
Here we go again…….
Matthew has been re-admitted to the BMT unit.
He started feeling worse as the day went on and finally around 1pm his temperature hit 100 so I called the clinic. We were told to come on in. So, figuring we’d be admitted I packed our bags and my trusty laptop. Sure enough by the time we got to clinic his temp was 101, his head was pounding and he was having trouble with diarrhea, and stomach cramps. He just feels like crap. He is still not eating or drinking anything at all. He’s lost about 6 lbs since Friday.
As we were getting labs and blood cultures drawn, a tech came rushing in saying she was here to do a STAT EKG. I calmly said “I think you have the wrong kid”, she checked her orders and told me she was in the right place. I was about to get burly with her when our BMT doc came in. She was surprised the tech was here that fast, even before she had a chance to tell me they were running the test. (HUH, why are you running an EKG on MY KID????
Then she says “we have the MRI test back and we have good news and not so good news”. At that point I began to blink, flush and almost hyperventilate. She asks “are you alright?” so I know that I must have looked as stressed as I felt. I said “I don’t know you tell me, you are running an unexplained STAT EKG, you have news on the MRI…..what is going on?”
Well, to make a long story short, the MRI did not show any structural issues, tumor or anything that would explain the headaches. (good news) It did show some “white matter” that was consistent with radiation and chemo but wouldn’t be the pain culprit. (not sure what kind of news for the long term) So, they were consulting with a Neurologist who thinks it might be migraines (lovely). She said he has so many things going on right now that they could be triggered by a combination of things. Tapering the steroids, Cyclosporin, dehydration, nutritional issues caused by not eating can all cause migraines. And she also thinks the narcotics he’s on for the pain could be causing rebound headaches that are exasperating the problem. So they cut him off the narcotics (the not so good news) and can give him another non-narcotic migraine type med via IV instead. The Neurologist wanted a baseline EKG before taking him on due to some of the meds he might need to try???? I don’t know, I didn’t get a solid explanation but the Neurologist is supposed to be coming for a consult soon I guess. So, after I realized the not so good news wasn’t actually horrible scary news I started to breath again.
So, they admitted Matthew for round the clock antibiotics and to try to figure out why he’s not feeling so well. Our NP says she thinks the headaches and this new chain of events are not linked but who knows.
So, we wait for test results to come back, get him some much needed fluids and antibiotics just in case it’s bacterial.
They put us in the same exact room…I hope they fixed the stinkin chair bed LOL.
Well, there are no pillows in here, I’m on a mission for some comfort for my guy!
Keep Matthew in your prayers and Never Give Up!
Love,
The Dynamic, tense and not feeling well Duo
******************************************
11:41 AM
Day 111
Is there anything magical about the number 111? Someone tell me YES please….
Matthew is just not feeling well. He is having all sorts of digestive issues and bad headaches. He looks like he feels like dog poop actually. He is also running a low grade temperature again. I am debating about whether I should call the clinic.
It makes me sad to see him feeling so poorly. I wish I could do something to make it all better…like wave the magic wand that my friend Sara gave me a few years ago.
Please pray that Matthew feels better soon and that the MRI results are ok.
You folks are a very brilliant group of folks. The ideas about how to “make a Cincy BMT parent feel loved and comforted” are fantastic. Keep them coming!
Keep praying and Never Give Up!
Love,
The Dynamic although sorta under the weather Duo
*************************************************
Wednesday, May 14, 2008 7:09 PM
Day 110 – 2nd Update
We are back in the apartment! Matthew’s sats remained in a normal range the rest of the day. We still don’t know what caused all the problems but I think maybe they are thinking it was a bad reaction to the IV Pentamadine. Although, they have never heard of such a weird reaction…Matthew is the king of weird reactions though. I’m just relieved his lungs are ok.
He did fine during the MRI. We won’t have the results until tomorrow or Friday. Hopefully, it’s all ok.
Matthew finally ate about 2/3 of a peanut butter & jelly sandwich for dinner. The first food he’s had since Monday. He is completely exhausted and has been resting in bed since we got home. We are both looking forward to a calm day in the apartment.
Our next clinic visit is on Friday. I’m guessing he’ll need a blood and platelet transfusion but that’s just my guess.
Today’s Counts:
Hemoglobin: 8.8
Platelets: 34,000
WBC: 2,200
ANC: 1,520
Thank you for the prayers! Thank you also for the response to my “how do we lend a helping hand to the BMT parents?” question….keep them coming. We’ll get our heads together!
Keep praying and Never Give Up!
Love,
The Dynamic Duo
****************************************
11:49 AM
Day 110
We are hanging out on the BMT unit waiting for Matthew’s 1pm brain MRI. He will have some mild sedation since it will be a long noisy test with a head pounder. He is NPO due to the sedation, which is really not a biggie for him since he has ZERO appetite. He hasn’t had any food since Monday lunch and that didn’t stay with him. He is getting fluids thru an IV so I’m calmer since that will prevent dehydration and help the kidneys too.
Matthew’s O2 sats have been great without the help of oxygen all night and so far today. Overall, he is just not feeling well.
If the MRI shows nothing of an immediate crisis state, then I’m pretty sure we’ll be sprung later this afternoon.
I really miss our apartment. All the old BMT unit rules came crashing back….no drinking or eating in the room for Mom, having to hike to the ONE POTTY on the floor, and of course the dreadful chair bed. My chair bed was broken so I had like 2/3 of a bed but honestly I was so tired after the chaos of the horrific day in Day Hospital, that I fell fast asleep with no trouble. I went to the parents lounge around midnight to use the ONE POTTY on the unit and had happy (of sorts) reunion with two Moms that were on the BMT unit for months prior to our transplant. Neither of them has been released yet. That means those poor kids and their worn out Moms have been inpatient for over 6 months. I felt so lucky at that point. I also felt the need to DO something for the parents on this floor. I’m going to ponder long and hard on this to see how I can help. These parents are living in a nightmare with honestly minimal support from anyone. The accommodations for the parent are unacceptable in my opinion. I remember sharing our goodies that so many of you sent us during transplant. I would take a box of cookies or candy to the parent lounge and within an hour they were completely gone. Such small thing brought a tad bit of comfort to these parents. Anyone have any suggestions or thoughts on this topic? What can I/we do to make this ordeal a bit easier for the parent? Email or leave me guestbook idea if you have any!
Well, we have about an hour until they take us down for the MRI, so please say a prayer if you could that they figure out the cause of the non-stop headaches and that it’s fixable and not TOO serious.
Love,
The Dynamic Duo
**********************************************
Tuesday, May 13, 2008 6:49 PM
Day 109 – 2nd Update
We are all cozy in our room on the BMT unit. Matthew is doing better, everyone is calm again. His O2 sats are looking better too. He’s getting pumped up with fluids and that should help his creeping kidney numbers. He hasn’t eaten a bite today but is going to try again as soon as it’s delivered. I feel better that he’s at least getting some fluids…..I can quit harping for awhile…poor kid!
They moved his MRI of the brain to tomorrow at 1pm. We are hoping to figure out what might be going on with his headaches. I’m not sure if the headaches are causing some of the nausea maybe? Our BMT was rambling something about trying some different medications, talking to a Neurologist etc. Some of the meds she mentioned, I recognized from our frolics with Logan’s migraines. Hey, maybe I can get a discount like two for one or something. GROWL.
They are “observing” his O2 levels until the MRI is done tomorrow. Hopefully, it was a fluke of a day and they will be normal tomorrow and we will be able to head back to our comfy apartment.
All discussions of “going home” screeched to a halt today. Even before the panic of the day started they had told me they want him to be more stable before we go home “for good”. (Stable as in needing platelets only once a week, the headache issues figured out and addressed, and the appetite/eating issue resolved.) But it sound like once that happens the next step might be to continue our long weekends at our REAL home (Friday night to Monday afternoon) and Tuesday thru Friday in our Cincy home with clinic visits on Tuesdays and Fridays. Then once we can get to weekly visits we would go HOME HOME and go to Lutheran clinic weekly with a visit to Cincy monthly. That sounds pretty doable to me! It sure would be nice to get things stable again and it sounds great to be HOME for real!
Matthew is pretty tired after all the excitement of the day….I am too actually.
When I ran home to the apartment I found a stack of mail waiting for us! It perked Matthew up when I gave it to him up here in the hospital. Thank you Michelle for the snacks! Thank you Mary for the DVD’s. Thank you Ruth and Stacey for the cards! They sure meant a lot after a long grueling day at the hospital.
Keep praying for our Super Hero and Never Give Up!
Love,
The Dynamic Duo
*******************************************************
Tuesday, May 13, 2008 2:49 PM
Day 109
Well, this is a fine kettle of fish………
Matthew is being admitted to the BMT unit. He is not feeling so well. This weekend his eating and drinking was markedly decreasing. This morning we arrived to the Day Hospital at 7:30 AM. Nurse Brooke drew labs. Then Matthew sprung a leak. Yes, a gusher reminiscent of Old Faithful began. So, we all chuckled and mumbled, I guess he needs platelets. Brooke started his IV Pentamadine and about 20 minutes later Matthew got very nauseous, hot, his heart rate flew up to 159 and he began to shake. I ran for a puke bucket and the nurse. They stopped the Pentamadine right away. Meanwhile Matthew’s dry heaving (from no food or drink) and blood is spurting everywhere.
They gave him some IV Zofran for the nausea and finally after 1hour and 15 minutes the nose bleed stopped. Matthew’s headache really began to give him trouble, so they gave him some pain meds. Then about 4 hours later while he was resting, I noticed his O2 sats dropping. Normal is 100. I’m watching them drop to the low 90’s and then the low 80’s, then low 70’s and when they hit 69 I ran screaming for the nurse. When she heard O2 in 60’s everyone ran into the room. The BMT doc was paged, our transplant coordinator, the NP and our nurse AND me were all staring at the monitor watching it slowly creep back up and then drop back down again. They ordered a portable STAT chest x-ray and blood gases to be run right away. They changed the O2 probe to rule out equipment malfunction and then started him on oxygen.
The chest x-ray is normal, he sounds normal but the blood gases were low. They want to admit him for now to observe and keep him on oxygen but if the sats continue to drop they will do a bronch-o-something-or-other to rule out Pneumocystic pneumonia (PCP). The dreaded pneumonia we don’t want to have. I guess that is the only way to diagnose this as it may not show up on an x-ray or by listening. Low O2 is a symptom. UGH.
I also asked them to hook him up to fluids since he’s not drinking. He’s got fluids going now. They didn’t want to give him his platelets due to the pre-meds possibly further suppressing his O2. But now that we have him on oxygen they feel safe to proceed.
So……….I’m here at the apartment typing 10000 words per minute and packing some stuff for a 2 day stay. Luckily, we are only 15 minutes from the hospital if we need more stuff.
Please pray that we figure out what is going on with the headaches, the nausea, no appetite, not drinking and the dropping O2 sats.
More later…….
Love,
Nancy
Read Journal History
Hospital Information: Patient Room: Guest Room # 121 Arcadia Residential Suites- Attn Nancy Vinson
11180 DOWLIN DRIVE - Room 121
Cincinnati, Ohio 45241
Links: http://teams.lightthenight.org/NeverGiveUp_LutheranHospitalCampus Team Never Give Up - Light the Night 2007
http://www.active.com/donate/ltnIndian2/2193_vinsonn Nancy's Light the Night Fundraising Page! Please donate today!
http://home.comcast.net/~nvinson/Komet.jpg Matthew's Article in the Fort Wayne Journal Gazette-Double click to make it more clear!
|
|
