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SeanaRain
04-28-2004, 11:02 AM
The following is an email from Jen. I thought I would share it with everyone here.

Aleyna

From: [email protected]
Subject: We are home!

Hi All,

Just wanted to take a moment to write to you. We are home now. I have not
been home in a week and as you can imagine my mailbox is full of well wishes
and prayers, not to mention my snail mail box, and some wonderful ladies who
came to see us at Mary Bridge. I have not even went through it all yet but will
as the day goes on. I don't know if I can express my gratitude and thanks to
all of you for your prayers, thoughts and generosity to our family at this
time. Thanks just does not seem to cover it. As I read through your messages,
it just brings more tears but joyful ones at least. How does a person say
thanks so that you all really feel it in an e-mail? It just is not possible. As
I have always said, you are all so wonderful, I know I have the best
customers/friends that a WAHM can have. We are so touched by your outpouring of
support to us, I cannot express it. If you were here, I would just hug you all
since gestures say so much more than words. This has been a very emotional week
as you might expect.

Samuel was diagnosed with Leukemia on the 20th, our 8th wedding anniversary.
He had his second birthday in the hospital on the 21st. It was very
emotional for us. If we had not have taken him in when we did he would not be alive
today. The process of getting him admitted and blood tested, etc was very
traumatic to us and him. My once happy loving baby is now very fearful of
strangers. That is unless you were one of the ladies who came to visit him with baby
in tow. His blood was literally bleeding inside his body. He was admitted
in critical condition with a white blood cell count of 265,000. Normal is
10,000 or so. There were a barrage of things that could have happened to him and
they were very fearful of many many things that did not happen due to your
constant prayers. They first told us we would be there a month. Then after two
days they said minimum two weeks. In the last few days the main cancer
specialist has been dumbfounded with his progress and response to treatment. They
could not find a reason to keep us past today. We know that this is because
you all have prayed for him and spread the word to others to pray as well. I
honestly pray that they will come in and tell us that the diagnosis is a
mistake and he does not have cancer and we will not have to put him through three
years of chemo treatment. He is coping very well considering and again the
dr's are scratching their heads in disbelief. The hospital staff was phenomenal
and treated us like royalty. On Samuel's birthday they brought him gifts and
made him a card. I could not be more impressed with that and as you can
imagine, after Anna's ordeal, our expectations were very low.

May I just say that I did read some posts from people feeling helpless.
Please don't. What we honestly need more than anything you can send or give is
your prayer support for our family and especially for Samuel. People ask what
we need/want. It is so hard for me to say because I know that we are all moms
who pinch our pennies and I don't want to be a burden on you or in your
minds. I guess it is just hard to ask for things and hard to accept
things....maybe I am still in denial of our situation. If I can ask you for something it
would be your prayers. Your prayers are working. The dr's are calling him
their very special boy. Please do not stop praying. For those who ask what we
need, I would say prayer. Prayer works. If we have to go through this
illness, I would like it to be with a child that proves that miracles do happen. I
believe that all things work together for good and God would not have us go
though this unless it was to help someone else in the process. I hold onto that
as I cry now. Samuel does have some pain issues but has had many happy
moments in the last few days which make it easier to swallow. If I could ask you
to pray that the chemo treatments will be effective with NO side effects for
Samuel, that is what I would ask. I don't want to see my baby have to be sick
from the so called cure for cancer. I have very mixed feelings about putting
toxins into my baby to cure his disease. It goes against everything that
screams sensible to me. May we all pray that God will sanctify these toxins that
they would not harm him while ridding his body of the cancer. I know that God
is hearing all your prayers so if we can come into agreement on this that
would be the best thing you can do for our family now. My older children are
coping well and don't really realize the magnitude of the illness. Anna was a
very good baby who was allowed to stay with me even though it was against all the
hospital policies. Even when Samuel was in the ICU she was allowed to stay.

This is getting longer than I wanted it to so I will close for now as I have
much to do. I will unpack tonight and clean up a few loose ends. We are off
very early in the morn for another chemo/spinal tap and the like. Then home
again until Thursday when I will be packing up again as he will probably be
admitted to the hospital for another blood transfusion and then surgery for a
port to be installed into his chest on Friday morning. This will help his life
at home to be more normal. Right now he has a PICC line hanging out of his arm
which has been nothing but misery for us all so he cannot take a bath or do
other things that for us are normal. Please keep him in your prayers for these
things to come. He is so traumatized by this whole thing and as his mother
who is supposed to protect him from all evil, it is very hard to allow people
to poke and prod him.

Please love on your children tonight. You never know what tomorrow may
bring. Often times children appear healthy when they are not. We were very lucky
to see some external symptoms on Samuel's body that screamed take him in or we
would have lost him.

It seems silly to say thanks to you all again but thanks! I hope you can
feel it in your hearts. With hugs and love from us here.

Jen, loving wife to Mark
Mom to Princess Kaysha (7)
Daniel (5) who wants to be the fixer,
and Samuel (1.5) the sweetest little man in the world
And Anna Delma 2/28/04, a sweet angel from Heaven
ALL BORN AT HOME IN THE BATH TUB

larson
04-28-2004, 11:29 AM
What a great letter! It gave me goosebumps to read how well Samuel is responding to treatment. Cancer is a hard thing to deal with. My dad is currently battling it for the second time and I think will not survive. He has had many blood transfusions, and 2 blood clots. His clinic is believed by some to be 'out there' and has gotten bad press, and will possibly close. So he will have to find another dr. and hosp to get treatment at. This is after being booted from a study at MD Anderson Cancer Center in Houston. Watching him sell all his favorite things (his tractor and farming equipment, the RV) and prepare to build a house that is new and simpler for my mom is incredibly difficult. He still gets sick--can't always swallow his meds, of which there are many. Can't always get chemo because his blood count isn't good. THe one thing that seems to brighten up his day is his grandchildren, and I am so happy my brother and i were able to give him 3--practically all at once! It is rather chaotic and noisy when we are all there--the twins are almost 8 mos and my ds is 6.5 mos. BUt I think he enjoys it in a way.

I hope that Samuel's battle is short-lived and that Jen and her family continue to find strength wherever they can. Please don't hesitate to get a second opinion, after getting treatment at the Mayo Clinic, my dad sought treatment elsewhere because they do not do much 'experimental' stuff there. Go with your gut and stand up for what you think needs to be done. It isn't always easy with medical personnel, but sometimes is necessary.

I will be thinking of Jen and her family....

Carrie
SAHM to Dagan 10.6.03

new_mommy25
04-28-2004, 09:15 PM
Aleyna,

Thank you so much for posting this update.

NEVE and TRISTAN
04-29-2004, 09:54 AM
Thank you so much for sharing this letter...I am honest to god teary eyed over what they are being dealt and teary eyed over how well he seems to be doing.

Jen is an inspiration and a pillar of strength that is for certain.
Great news, it made my day thank you so very much!!!!!

Neve
http://home.nc.rr.com/ourbabytristan
AKA "mama2be"-forgot password
and Baby Boy Tristan born @UNC
Feb 25, 2003
Brother to 3 pups "gees" and 2 kitties

mik8
04-29-2004, 02:43 PM
Aleyna,

Thanks so much for posting this update/letter fom Jen. I have been thinking of them lately and wondering how things are going. Sounds like Samuel is in a fighting spirit and the whole family is steadfast strong inspite of this hurdle. I have very strong beliefs that dear Samuel will topple this mountain. I will continue to keep them all, especially dear Samuel, in my thoughts and prayers.

(Edited to add: RE: PICC line - if Samuel loves to take a nice little quick bath, it can be covered with an "occlusive plus waterproof" type of dressing during bath time. Have Jen call and ask the nurse about this. We have allowed our adult patients to do this as long as it's covered properly. However, they may have restrictions protocol in their home care).

kelle1996
04-29-2004, 06:46 PM
That is such great news! I tear up every time I think about them.

deborah_r
04-30-2004, 12:16 AM
Thank you for sharing this. I'm in tears here as well, but many of them are from happiness that Samuel is responding so well and from pure awe of Jen's amazing strength! I will keep praying for the best for him.