Thursday June 12, 1997
Steven is starting to feel bad from the affects of the chemo and
radiation. Today is his last radiation treatment. They anticipate his
Bone marrow transplant will take place around 12 midnight or 1 am. Trev
is trying to get them to do it before midnight, as tomorrow is Friday
the 13th. He went into remission on Friday the 13th and she doesn't
want his bone marrow then, since the remission didn't stick.
I spent the morning with him and gave him a bath in a little tub
and played Nintendo with him. He told the nurse "I'm nauseous" and
threw up twice while taking his medicine. Mostly he just lays around
and doesn't feel so good. His Lung specialist said the xray was better
every day. His infectious disease specialist said he is starting to
feel the affects of the radiation and chemo. His Doctor said that he
was doing fine. Steven had insisted in seeing his doctor and wouldn't
tell anyone what it was about. When his doctor came in, he told him he
wanted permission to use a bubble gun that shoots bubbles. Dr. Bowman
said he would talk to the nurses. Steven says very loudly..."YOU are
the boss". All the nurses and everyone laughed. He has the chain of
command figured out.
Nancy AKA Steven's grandma
Wednesday June 11, 1997
Tomorrow is the big day with Steven. He will probably get his bone
marrow transplant in the late evening or night. Tomorrow at 4:30 is his
last full body irradiation, I think. I think he has finished the
chemo. Trev said he has a rash, and every time he gets a radiation
treatment, it gets darker. I guess that is where the all over sunburn
from the radiation comes from. It itches and they give him benadryl IV
and it conks him out for a few hours, so he doesn't like to take it.
I wish you could see how he is so totally cooperative with the
nursed, doctors, for his radiation, etc. He is "some" 5 year old. For
the radiation, they put him in a big room alone on a table and tape him
to it. We got him a children's tape to listen to, and he has to lay
there absolutely still for about 10 minutes. We can talk to him thru an
inter column, but he told the technician to please be quiet. I think I
agree with Trev, it breaks his concentration and keeps him from being
able to daydream as easily. Having it done is not uncomfortable, just
having to lay still is. The nurses just love how he uses medical words,
like, "my bladder hurts," or "don't pull on my line.) (IV) He is really
doing pretty good under the circumstances. He WBC are zero. He has had
2 units of platelets and one unit of blood.
My server seems to be working, so will keep updates going while I
can. Please say a special prayer for the 48 year old male hero who is
undergoing surgery in the morning so Steven can live. And a prayer for
our little baby hero and his mom and dad.
Nancy AKA Steven's grandmother
Tuesday June 10, 1997
Steven isn't doing too bad considering. His immune system and blood
count is about rock bottom right now and he is getting full body
irradiation twice a day. He is so brave and just totally cooperates
with everything. The full body irradiation makes him sleepy and
nauseated, but the full affects probably won't start until Thursday or
so. Thursday is the big day to get the transplant. It will probably be
infused late that night. He is playing still and in a good mood except
he is sleepy. The nurses said that he will sleep like a newborn. I saw
Dr. Bowman and he said he is doing good. I will update again tomorrow
if anything happens.
Nancy AKA grandma
Sunday June 8, 1997
Steven is sure looking good today and in a really good mood. He
was out of bed all afternoon and evening playing. Kids have such
resiliency. I stayed with him so Trev could go home and just soak in a
bubble bath or what ever to get a break. This week will be a difficult
one. He starts radiation about 4 am tomorrow morning. The nurse said
we may see some affects tomorrow afternoon, but maybe not until 24 to 48
hours has passed. He just hugged and played and talked and it did my
heart good to see him. He had his catheter out today and is doing good
without it. He also has his Oxygen off now.
Saturday June 7, 1997
Steven is a little better today, and played a little and kept drifting
back to sleep. He has a fever and red blotches all over that is a
normal side effect of the chemo. Monday morning at 4 am he starts full
body irradiation, and that will give him "radiation sickness" and a
sunburn all over.
Nancy AKA Steven's grandmother.
Friday June 6, 1997
Things are getting worse everyday for him and I think Trev and Danny can
use all the support they can get. He is running a fever of 103 now and
the just put oxygen on him and did a portable chest xray. He has an
entire team of specialist helping him get better, and one is a lung
specialist. His hourly output had diminished, and they gave him a
saline bolus IV. The nurses are keeping a close eye on him. He is still
covered with red blotches and complaining of his catheter. All of his
symtoms are probably normal for the affects of the chemo he is getting.
He is feeling really bad and grumpy and sleeping and doesn't want to be
bothered, or touched or talked to. When his fever breaks, then he is
ready to play, but I'm not sure we will see him playing for a while
now. A race car driver came yesterday and Trev got his autograph.
But Steven felt to lousy to care. Next week our mail server is
"upgrading" and we all know what that means. So if the updates for
Steven don't get out, and you are concerned, email Danny. His server is
different. My normal mail, etc is suppose to be restored by Friday. But
that will be the day after his actual transplant takes place. Monday at
4am he starts full body irradiation.
Nancy aka Steven's grandmother
Thursday June 5, 1997
I went to see Steven today and he looked bad, but was actually
looking worse than he felt. Then chemo he had caused a deep red huge
blotches all over his little body. That is an expected side affect of
one of his chemo drugs. He has even got red rimmed eyes. I ask him if
it hurt or itched and he said no. Trev said that yesterday he threw up
twice. Last night his fever went up to 104.5 and then disappeared as
quickly as it started. He told me his stomach hurt and his neck and his
left side. But he looked like the pain was mild. He is still playing,
but he doesn't want bothered, and just plays his Sega game gear.
Nancy AKA Steven's grandmother
Wednesday June 4, 1997
Steven is looking good today. His face is still swollen a little and he
is still complaining about having a catheter, but he is in a good mood
and actively playing games. He is having no pain or discomfort or nausea
today. We played Candyland and Hi Ho Cherrio's and Star Wars of
course. Trev and I traded places and she took the baby and I played
with Steven for a hour or so. Steven told her to stay away along time
because he wanted to play lots of games with me. Poor Trev is in that
little cubicle of a room and will be for the next 6 weeks or so. The
whole room is the size of two twin beds pushed together with a
dresser.
He is hooked up to a heart and blood pressure monitor. And monitor
for his oxygen that attaches to his toe and makes his toe glow red. He
has 3 lumens of Hickman IV tubes to his chest and they are attached with
gauze so as not to traumatize the skin removing the tape. And of
course, his catheter. They have the catheter tube attached to his thigh
with an ace bandage like thing with velcro. He is on hourly intact and
output. He has about 5 IV bottles running continuously and the chemo
runs all the time, not in divided doses. He has a respiratory treatment
every few hours with a oxygen mask and humidified medication. I guess
that is all today that is new. Keep up the prayers the next 6 weeks for
his complete healing and comfort for Trev and Danny.
Nancy aka Steven's grandmother
Tuesday June 3, 1997
Steven started his chemo today and the affects are so potent
that Trev said he will be vomiting within 3 days. Today he looks very
sleepy and his face is swollen. He doesn't like the catheter at all,
but said that he was OK other than that.
Nancy (Steven's grandmother)
Monday June 2, 1997
Steven went into the hospital today. He is on the bone marrow
unit. It is a four bed ward and he has his own little room. One entire
wall is some sort of filtered air thing going constantly. The nurses
made him a pretty name tag for his door and a sticker poster for him.
He gets a sticker every time he does his mouth care. They also made a
big six week calendar called Steven's calendar with all the important
dates on it. Today said, "Had my picture taken" with a cartoon
character getting an xray. He also went to radiation clinic to get
measured and has big "X" on each hip. Tomorrow he gets a foley catheter and they
start the potent chemo drugs. I brought him some "bone marrow unit"
toys and Trev will dish them out as he needs them. Trev and I also hung
a bunch of mylar balloons out his window over the balcony to the
Atrium. There is a phone he can talk back and forth to us and he
thought that was really cool. I went into the unit too. It is required
that we wear the yellow paper gowns or scrubs. Nurses have to be masked
and I think gloves. Family doesn't have to mask. Any toys he gets have
to be new and still in the box. The outside of the box is sprayed.
We are all scared and worried and putting on brave fronts. We have the
best doctors and the best hospital. All we can do now is pray.
Wednesday, May 21, 1997
Steven is still in the hospital. He can't go home until his ANC
count is 500 and it is about 250. This morning he had a blast in his
blood work. The doctor said that if it is a "good blast", then they
will do nothing. If it is a "bad blast cell", then he will have to have
another 3 days of chemo. Trev said that it won't delay his bone marrow
transplant, though. It is very frightening how aggressive the type of
Leukemia he has is. He does look great. He looks way too healthy to be
in the hospital. Please remember him in your prayers tonight.
Nancy (Steven's grandma)
Thursday, May 15, 1997
Steven is doing terrific. His blood count is coming up, and as soon
as his ANC reaches 500, they will let him go home. He started to show
some SEGS and BANDS in his blood work yesterday, so it won't be long.
They will keep him on the antifungal medication from now on, and he will
have at home respiratory treatments. His color looks good and he is full
of energy.
Today he had a bone marrow aspiration, and the results were that he
had one Leukemia cell. His Doctor said that was excellent. So they will
not do another round of chemo. They have actually scheduled his bone
marrow transplant now! He will move into the bone marrow unit on June
2nd. On June 3rd he will start 6 days of intensive chemotherapy to
completely kill his bone marrow. After that they will do 4 days of full
body irradiation. On June 12th, he will have his transplant. He will be
in the bone marrow unit for at least 6 weeks. His blood count will take
(I think) 100 days post transplant to recover. This is going to be
incredibly hard on him and Trev and Danny.
Steven told me yesterday, with the bent elbow sign, "YES! They have
a donor!" He looked so cute, and I thought there is no way he knows what
that actually means. But he knows the words, like "my blood count is
rising." He always was one for the 50 cent words.
Nancy (Steven's grandmother)
Tuesday, May 13, 1997
Are you sitting down? We have a donor match!!! 6 out of 6 all match.
It is a 48 year old man. He still has to pass his physical, but if he
doesn't, then there are back up matches. I am so happy I am crying.
Steven is doing terrific. Thursday morning they will do a bone
marrow aspiration, and the results of that will tell the doctor which
way to proceed. His WBC are still rock bottom at .3. His platelets are
37. His HBG is 10.3 so that part is normal. They won't do the bone
marrow as long as he has any signs of pneumonia though. They are still
waiting for the bronchoscopy cultures to grow and see what it is he has.
I don't think the doctor saw anything when she did the Bronchoscope.
He is up playing and laughing and looks terrific. He had a star
wars sabersword fight with Dougie, sound affects and all. Dougie
dressed up like Darth Vader is all black outfit and a GI Joes gas mask
for a "Darth Vader " mask. I protected the IV pole while they went at
it. Nancy
Monday, May 12, 1997
Steven is doing really good. He is off oxygen and is gaining
strength and playing out of bed in his room. Sometimes he complains of
stomach ache, but just a little. I'm not sure what that is. His doctor
said the pneumonia is "serious but improving." The cultures haven't
come back yet. They haven't done a bone marrow aspiration yet because
his platelets are so low. They were going to do it this coming Friday,
and that may still be the plan. His WBC are still rock bottom at .3.
The blood transfusion did bring up his HBG to 9, and his color sure
improved. He still has a fever now and then, but it is better too. Now he is finally feeling good enough to be bored locked in a 2x2 isolation unit.
Nancy (Steven's grandma)
Thursday, May 8, 1997
Steven did go home today, he was so happy and up playing. He went
to the "children's chapel" and every question the lady minister ask the
kids, Steven popped up and answered. It was on TV and is going to be on
the children's miracle network May 31 and June 1st.
Steven gets another bone marrow aspiration on Friday. If it shows no
Leukemia cells, then they will just keep an eye on him and wait till the
bone marrow transplant is ready. If it shows Leukemia cells, they will
do another round of chemo. He went home with a machine to do breathing
treatments ever so often. His Doctor said that it was just his thing to
have the complications hit his lungs each time and they will just keep
him on the respiratory treatments until his bone marrow is done. He
looks good and only has a little cough. He is off Oxygen now. Trev is
so brave doing all these complicated procedures so that he can be home.
She also takes care of his three lumen Hickman IV that goes into the
blood vessel above his heart,flushing it with heparin and changing the
dressings and has had to give him antibiotics thru it before.
The doctor checked and his bone marrow transplant is still not
matched and ready. I will send any further updates if anything happens
or he gets a match.
Nancy
Well, good news! Steven might get to go home Thursday. He hasn't
had a fever since yesterday morning and this morning they took off his
oxygen. He still gets respiratory treatments for the "crackling" in his
lungs, but is otherwise doing good. I thought you might like to hear
some good news today. Thank you all for your prayers, they sure are
powerful.
Nancy
Steven's fever broke and he is up playing in bed and doing much
better. A specialist in infectious diseases came by to see him and
thinks it's a virus too. They beleive since he is doing better, to just
let it run its course. He is still on Oxygen by mask and when they
tried to wean him off, his pulse oxygen level dropped, so they had to
restart it. That was yesterday, he may be off of it now. He had a unit
of blood and they think the red blood cells will help him oxygenate and
it definitly made him feel better.
Nancy
"Pray for our Children. They are GOD'S Gift for the future"
Sunday, May 4, 1997
Steven's temperature is down some from the 104 (aux) that it was
running. He is sitting up in bed and awake some now. He was doing that
panting type breathing and his color changed to greyish, he had
decreased breath sounds in his lungs, so they checked
his pulse ox...Is that what it is called? And gave him Oyxgen and a
chest xray. It came back showing fluid collecting in his lungs, so they
gave him Lasix.
His Platelets are way down and they gave him a unit of platelets
yesterday and he will have another one today. He also has to have a
blood transfusion.
Marina said yesterday that he was in a good mood talking to
her telling her to "talk to the hand" when she told him the light on his
toe that checks his Oxygen level is a red light saber and she didn't
know why he wanted a green light saber so bad when he had a red one.
(the green one is Lukes and the red light saber is Darth Vaders) He
really wants a GREEN light saber to play with and we can't find one
anywhere in Ft. Worth. He told his mommy to please take Aunt Rina with
her when she left the room (I guess he was tired of her jokes. LOL)
Nancy (Steven's grandmother)
"Pray for our Children. They are GOD'S Gift for the future"
Saturday, May 3, 1997
I am on my way to the hospital to visit Steven, but I wanted to
give you a quick update.
It is probably a virus infection causing his fever. It has been as
high as 104 (aux)and he is sleeping most of the time when the fever is
up and having alot of dreams and talking in his sleep. His fever is
causing him to breath like he is panting and upset his oxygen balance,
so they put oxygen on him. His WBC are .1 and his hbg is 9.0 and his
platelets are 8. He will probably need a platelet transfusion today.I
will send more updates as I learn more.
Nancy (Steven's grandma)
"Pray for our Children. They are GOD'S Gift for the future"
Thursday, May 1, 1997
Steven is back in the hospital, room 13. He has a fever of 102.8.
Trev said that they told her he would be here for a while. She said he
is tired but is doing fine. They took xrays and blood work and she will
let me know what they say. Right now she said he is excited about being
in the hospital but can't leave his room or go to the playroom because
of his fever. I will send more updates as I learn more.
Nancy (Steven's grandmother)
This is where Steven is NOW!
Cook-Ft. Worth Children's Medical Center
801 7th Ave.
Rm. 3010
Fort Worth, Texas
76104-2796
"Pray for our Children. They are GOD'S Gift for the future"
April 22, 1997
Steven was admitted to the hospital for chemotherapy today. He has
had episodes of pain and the doctor feels he has "pockets" of Leukemia
cells causing it. When he was first diagnosed they gave him
chemotherapy with a drug called Ara C(among other drugs). It took two
bouts of this drug before they could get him into a remission, instead
of the usual one. So the doctor feels that he will be even more
resistant to it now.
They will be attacking the Leukemia cells from a different angle.
They are going to use the Ara C in injection into his spine tomorrow to
precautionary to prevent central nervous system involvement of the
Leukemia cells. Then they will use a drug called Idarubicin, which is
similar to one he had last time. But they will also be using a drug
called Leustatin (cladribine). It is a drug just beginning to be
released for National studies, FDA approved, and they have had a lot of
success with it in adult AMOL Leukemia.
He will have these medicines for 5 or 6 days and then go home until
his blood counts fall. The doctor said his counts will stay down longer
with this drug regimen.
This is not the pre bone marrow chemo. He will still need that and
full body radiation prior to his bone marrow transplant. We are still
waiting for that, it may take as much as two more weeks.
Today he just had IV fluids to build him up, he starts chemo
tomorrow. So he feels ok and was up playing Bingo with the other kids
and won twice.
Please remember him in your prayers today.
Nancy, Steven's grandmother.
April 22, 1997
Steven is having leg pain and today spine pain briefly . He did
that the last time he started to show symptoms. The doctor has him on
Tylenol #3 and if it doesn't help...Trev takes him to ER and they give
him morphine. Most of the time he is the same active playing little
boy so it is hard to beleive he is so sick. His platelets have already
dropped to 113. (from 200 last week). His RBC and WBC are rising and
the doctor said that is because the Leukemia cells are pushing them out into the blood stream.
He is going into the hospital tomorrow for six days (I think) of chemo
to try to stop the Leukemia cells from going until their is a bone
marrow donor available.
Everyone has been so supportive. A home health care nurse said
yesterday that I found a real positive help. She said that the children
she has treated seem to live up to the expectations of the parents and
primary caregivers. And if she could give one piece of advice to the parents, it
would be to set your expectations high, that they will go home and the
will heal from this. I realized how we have been feeling hopeless with
the odds so poor and this would reflect in our attitude unconciously.
The nurse mentioned how the child will fight mouth care and all aspects of treatment, with "why bother" if the
expectations he sees in his parents are reflecting this too. Isn't this
an enlightening piece of advice? So we have changed out attitude and it
also gave us something "to do" to help.
This weekend (and most of last week)we have been taking Steven and
his mom and dad and brothers out to special places. Yesterday we went
to a rodeo for "wish with wings" And today we went to see Indians
dance. Dougie and Mikey went out in the arena and danced with them, but Steven was too shy. A famous
cowboy trick riding movie star did his show just for Steven....and
wanted a picture with Steven for himself. All the Indians and the
cowboys each gave him neat stuff (bow and arrow, feather, etc) and are praying for
him and want us to keep in touch. The specialed him out of everyone
there and sort of adopted him. He was so shy he wouldn't go to the
arena, so they all had to come to him...some of them on horseback! One
told an Indian story about a doll and how it was the only thing a little girl had to give and she
gave it to the great white spirit. She demonstrated by laying it on the
ground of the arena as she told her story. When the little girl woke
up, their were fields of blue bonnets everywhere symbolizing that the
Great White Father forgave the people. Then she told the story of how
she herself survived 2 heart valve transplants against all odds.
Then in the middle of the show, she walked up to the stands in the arena
where we were sitting, and gave the doll to Steven and told him she
wanted him to have it. I guess I don't need to tell you that Trev,
Danny and I all had tears in our eyes. Steven, he just sat there
smiling shyly. After the show we went to see the new Power Ranger movie and he loved
that. He acted out the fight scenes, and ate candy.
Last weekend we went to six flags. He went down that water plume
thing twice and loved it. We had a great time. He got to meet bugs
bunny too, and he has a bugs bunny stuffed animal he carrys around with
him now.
Nancy, Steven's grandmother.
Email Steven and his family at babylizard@earthlink.net
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