Steven has been sleeping a lot and his Daddy said he had a bad day today. They are weaning him off Morphine, and he is complaining of pain in his throat and stomach. The nurses said he is doing fine and all his symptoms are "typical" for post bone marrow transplant. His doctor said that he is way ahead in recovery from what is expected. I believe that is from all the people praying for him. He has not had a fever the last 24 hours since they started him on Vancomycin, but it makes his little cheeks all flushed. He hasn't been awake for my visits and hasn't felt like playing at all. So I hang his little toy I bring him in his room for when he is feeling better. His ANC count is over 500 so they will be testing it soon to see if it is donor blood cells, or Steven's blood cells. Trev said that although he has SEGS and BANDS that he has very few blood cells, so he is still extremely susceptible to infections. He still has his GVHD, but the nurses assured me that their was no sign of organ involvement except the skin at this time. Nancy AKA Steven's grandma
Steven: 2 weeks post transplant: Steven has been running a fever as high as 104. His Hickman line culture came back positive today for Staph infection. The doctors added Vancomycin to his regimen of antibiotics. He has been sleeping a lot and the last two days I visited, slept thru my visit and isn't even interested in the toy I bring. He's too sick to play. Trev said the doctors haven't seemed real worried about his infection, so I guess we are waiting to see on that. His rash all over his body is better and the GVHD isn't over, but isn't showing any signs of worsening or of organ involvement. Trev is starting to really show the strain but is hanging in there. It would be nice if she could just take a weekend off from the worry and stress. Nancy AKA Steven's grandma
Steven 13 days post transplant: Steven's skin biopsy came back positive for Graft Versus Host Disease (GVHD). He has a rash from head to toe from it. He also has some slight jaundice to his eyes. But he is actually feeling much better. His GVHD is "typical" and not to severe according to his medical team. He is back to wanting to play with toys and getting out of bed. His mouth has gotten better and he is talking a lot more. His ANC count is about 250, and when it reaches 500 they will test to see if it is his blood cells or his donors. His doctor said that a mild case of GVHD is wanted because it not only helps the donor bone marrow to graft, but it also kills the Leukemia cells. Trev is doing OK, but it is taking a toll on her. It is a long time to spend in a 6X4 foot room and such an emotionally draining situation. He doesn't want her to leave, and when she does, he chants Mama mama mama mama. Nancy AKA Steven's grandma
Steven 11 days post transplant: I just got back from visiting Steven. He has mild GVHD (Graft Versus Host Disease) starting. They did a biopsy of two sites on his thigh while I was there to confirm it and also to culture it looking for fungus and bacteria infections of the skin. He has a deep rash there, and that is what they biopsied. A doctor did it, and each site had one stitch to it. The doctor got a big ole 10 cc syringe and thick long needle and Steven goes, "MOMMA!" And the doctor looked at him and said, "Oh, no, this is just to take the medicine out of the bottle, not to stick you." She gave him lidocaine under the skin in the areas he was getting biopsied, and we all know how that hurts. They also gave him Morphine before hand. He had a unit of platelets today and a unit of Red Blood Cells. His mouth is much better and he is talking more. He is also starting to enjoy presents again. The nurses said his mouth is better because he has White blood cells now. He is still complaining that his throat hurts, but not as much. GVHD is when the donor cells think Steven's skin and organs are a foreign matter and attack them. It is good he is getting it if it stays a mild form. It will help the donors bone marrow to graft. In severe form of GVHD is life threatening. So all we can do is pray it stays a mild case. He had a fever of 103+ that they couldn't break with Tylenol and he was getting the shakes, so they gave him something special IV that broke the fever. They said that fever is also a sign of GVHD. Skin, liver, stomach and intestines can all be involved. Nancy AKA Steven's grandma
Steven 10 days post transplant: We have great news. Yesterday he had 1% segs in his blood count, today it was 10% segs and bands. So he is starting to recover from the chemotherapy, radiation onslaught and seem to be on an upward spiral. Please keep the prayers coming. Nancy AKA Steven's grandma
Steven day 9 post transplant: He is feeling really bad today and has a fever of 103. The doctors are concerned about the fever. He just wants the lights off and the drapes closed and everyone to leave him alone and not talk to him. His mouth and throat are very painful right now. On a positive note, his blood work showed a seg today. That means his bone marrow is starting to function again! They will wait till his blood count is high enough for him to have a absolute neurophil count (ANC) of 500, then they will test him to see if he is producing his own blood cells again, or if they are the donor cells. We are hoping for them to be the donor cells to indicate a successful graft has taken place. Nancy AKA Steven's grandmother
Steven looks much stronger and seems to be doing better. He does still have a fever (101.5). His mouth rawness is worse, though, and they are giving him Morphine 1.5 mg every 2 hours for it. His Doctor said that the positive fungal culture of his blood could be a contaminated specimen but they are treating it as if it isn't and adding an anti fungal antibiotic. His chest Xray shows continuous improvement of the area he had fungal pneumonia previously, and they are watching it closely. His oxygen levels are good. He has laryngitis and told the nurses he doesn't want anyone to talk to him anymore because his mouth hurts. He looks like a little baby bird, wisps of white downy fuzz on his head and his big beautiful eyes and thin little body. Nancy AKA Steven's grandma
Steven seems much better today. He was out of bed for the first time in a while that he would do it willingly, and playing Star Wars with his daddy. He looks better and doesn't look quite as uncomfortable, or complain as much. He may have gotten away with mild radiation burns from his full body irradiation on just two or three parts of his body, instead of all over that was predicted. His mouth is still really raw on down, but they give him morphine before his mouth care. They have to sneak it into his IV, though, because he asks and knows the names of all his medicine. He won't take anything, even when he really hurts, that makes him sleepy. He has to have the mouth care to prevent infections there. On the downside, he had a blood culture come back positive for fungal infection in his blood. The doctor said that was really bad. The nurses said that it isn't unusual to see that post transplant. He isn't showing any symptoms, and they added another anti fungal antibiotic to his regime. I am waiting to see what his primary care doctor says tomorrow. We are pretty worried about it. It is amazing how that thin little body just bounces right back after each onslaught of powerful chemicals and radiation. I believe it has to do with all the people praying for him and keeping his spirits up. Nancy AKA Steven's grandmother.
Sunday June 15, 1997
The next two or three weeks will be especially hard on Steven.
The affects of the chemo and the full body irradiation have hit, and his
immune system was totally knocked out by them. So our biggest fear is
infection. He has started to run a fever now, but at this point, it is
difficult to tell if it is an expected side affect of an infection. He
did develop a yeast infection on his skin at one spot. They did various
cultures and he was a little trooper through it all. The mouth, throat
and on down rawness has started, and today they put him on Morphine as
needed. So he is sleeping a lot, and he doesn't like that, but he
dislikes the throat pain more. All his medicine is now IV except the
Tylenol. He perked up awhile today when I gave him some Star Wars toys,
but just smiled and held on to them, too tired to play. Please pray for
his comfort and strength and also for his mom and dad.
Nancy AKA Steven's grandma.
Saturday June 14, 1997
Steven is doing a little worse each day. Like a bout of the flu
that just gets a little worse and has no hope of getting better until
about 4 weeks have passed. He no longer wants to play, or cares much
about presents, and is throwing up more. He also had a fever this
evening. He just wants to sleep and the mouth sores and all the way
thru him is starting to happen. His lungs and x-rays and everything
look good (knock on wood). And the misery he feels is the expected
stuff, no complications. He wants mommy by his side all the time and
doesn't want her to leave. And of course, there is a slight case of the
crankies. But not too bad.
Nancy AKA Steven's grandma
Friday June 13, 1997
I stayed with Steven a while today and he is doing pretty good under
the circumstances. He still has that red splotchy areas to his skin,
but they don't seem to bother him. Today his doctor said he is starting
to get the mouth sores. And once today his temperature went up to 101.3
or so. But it was like a phantom temperature and was down within the
hour. They did blood cultures just to be sure. He does have some
nausea and doesn't like doing his mouth care because he is afraid he
will throw up. So we have to wheedle and conjole to get him to do it.
He had his bone marrow transplant at 2:30 am last night. The lab took
all the T cells out of it, and the measured out some and gave them this
afternoon by IV injection. I think it is interesting that the donor has
a different blood type than Steven, and Steven's blood type will now
change to the donors blood type. Also, the preservative that the T
cells are in and the T cells, travel thru the body instantly, and it
caused a preservative like odor to be emitted thru his mouth, skin
cells, everything. T cells are the special white blood cells that
recognize foreign matter in the body. The irradiation, and chemo lower
Steven's T cells to prevent rejection. The donors bone marrow also has
T cells, and those are the ones that had to be removed. The donors T
cells would recognize Steven's body as "non-self" and attack Steven's
tissues and organs. Because Steven's immune system is suppressed, he
cannot launch a counterattack. That is Graft-Versus-host-disease
(GVHD). It is one of the two things Dr. Bowman said we had to worry
about the most.(the other was pneumonia) The "graft "is the donated bone
marrow, the "host" is the bone=marrow recipient. When they experimented
and removed ALL the T cells, they found they greatly reduced GVHD. But
they also had a dramatic increase in graft rejection. So some T cells
are needed for the graft to work and also reduce the odds of relapse. I
am copying some of this from a book to try and explain why they want
some GVHD but if the case of GVHD is severe, it can be life
threatening. So that is why the T Cell juggling. The nurse told me
today that GVHD won't hit for about 2 weeks, when he starts to make
white blood cells again.
So he is right on schedule and everything seems to be OK. He is
feeling a little miserable, but he is still able to play but not as
actively. He tires really quickly and sleeps a lot.
Nancy AKA Steven's grandma