|
THURSDAY, MAY 17, 2007 02:19 PM, CDT
It's Thursday and we we're supposed to get to go home today. Routine blood work was positive for an infection so now we
will be here until at least Saturday if the cultures come back negative Friday and Saturday morning. Justice is devastated
and pissed off. It's hard for him to understand and we are surprized too because he didn't have a fever and he didn't have
any symptoms but they said that they might have caught it when if was first developing and Justice may not have developed
symptoms yet. He keeps talking about the wrestling match on Saturday evening we were all looking forward to it. Even if he
is discharged on Saturday I'm not sure it would be in time to make it. I have tried to not whine about all of this but it
just seems so unfair to him. He has missed a couple of big events that he has prepared to attend and it really gives his spirit
a big blow. If there is a god out there please give him a break and let him have a little enjoyment in life while he fights.
Justice keeps comparing everything to UVA. I try to remind him that this is an older hospital and every hospital does things
differently and that doesn't mean that its bad just different-well he doesn't want to hear any of it. It's a different atmosphere
down here, more business- like. The social worker has been able to find a room for us to stay in before we were admitted and
found a room for Rodney to stay in - the rate for family members of patients is $99.00 + tax and parking. This is defintely
DC. The cafeteria has more choices but each meal has cost us no less than $15. We do have good new though! Justice's MRI that
was done on Monday looks the same as the one that was done in March so they are telling me that they are sure was is seen
is scarring from radiation. There is a slim chance that it is something. There will be another MRI after chemo and transplant.
If that spot is smaller that would indicate that it was a tumor if it doesn't change then it was still just scar tissue. Back
to homework.
Juneta
SATURDAY, MAY 12, 2007 01:50 AM, CDT
Justice and I finally made it out of town yesterday to Winchester to spend a fun day out to do anything before chemo starts
next week. I felt so bad for him. After the drive and being in the store for 1/2 hour he was tired. He perked up when the
mall opened and I did get a smile out of him in the game room while we played games. He absolutely loves to watch movies so
we hit the 1pm Spiderman 3 but he had to go to the bathroom so much and after 45minutes he wanted to go home. He was sad but
I told him we didn't have to stay gone from morning to night just to have fun. We could make several mini trips to places.
My heart just aches for him. I can see the desire within his mind to rip and run like he used to but once he's up he doesn't
get very far before he runs out of steam. I just let him know our day is at his pace and to not worry about it. I hope that's
the right thing to do. We go to DC on Monday for a MRI and will be admitted on Tuesday for chemo and should be discharged
on Thursday. The hospital has been nice about setting everything up for us, however, there is a big price difference between
UVA and DC.
WEDNESDAY, MAY 09, 2007 11:19 PM, CDT
It's been a crazy couple of weeks home trying to get the house in order from really being gone since last July and only
being home long enough to "visit" . I have really realized how much care Justice needs out of the hospital with
medications 4 times a day, nausea, nausea meds, feeling dizzy and requiring frequent rest. I have tried to plan a couple of
things for him these last days before we start chemo again but he wasn't able to, he preferred to take a nap by afternoon.
We are supposed to start chemo again next week to hopefully get rid of the cancer cells that in the spinal fluid and then
start stem cell transplant after that. I haven't said anything to him but his whole summer will probably be spent in the hospital
if he get sick like he did before. Anyway, I'll have more after we have a set date next week.
WEDNESDAY, MAY 02, 2007 12:03 PM, CDT
We heard back from DC yesterday. Their neuro radiologist is the supposed to be the number one reviewer for medulloblastoma
for the children's oncololgy group for the country and we were told that the new spot found in Justice's brain is not a new
tumor but inflammation or scarring from radiation. He does have cancer cells floating in his spinal fluid so we are better
off than what we thought although not cancer free. According to the MD we now have more treatment options and do not have
to go the experimental route at this time. What they want to do is try a different combination of chemo to rid the cancer
in the fluid and then stem cell transplant. We were told that there wasn't any point in a stem cell transplant before because
they thought Justice's case was worse than it is.
Justice is upset because it will mean more time in the hospital. We are trying to keep his spirits up.
THURSDAY, APRIL 26, 2007 09:18 PM, CDT
We just got back from Children's Hospital in DC at 730 this evening. I was impressed with the physician's. They examined
Justice and the team is going to review his MRIs and slides to verify his diagnosis/ type of medulloblastoma and discuss the
best treatment options. We were told to expect to here from them by Monday.
TUESDAY, APRIL 17, 2007 03:13 PM, CDT
We got back from Duke University last night at 10pm. It was so big. I was disappointed. Justice is not eligible for the
intrathecal trial because he has a shunt. He is eligible for the Laptinib which is a pill twice a day. We are still waiting
to hear from Children's hospital in DC. Justice's labs are looking OK so we can try not using IV fluids at night and watch
his bloodwork each day for a while so that is progress.
FRIDAY, APRIL 13, 2007 01:53 PM, CDT
We got home Friday April 6th and received confirmation from cytology on Tuesday, April 10th that Justice does have mets
to the right lateral ventricle in his brain. I am more upset about this than I was with the original diagnosis-this gives
him a much more grim outlook. UVA cannot do anything else for him. We have spent this week looking at different facilities
that may have a clinical trial for Justice. We leave Sunday for Duke University in North Carolina and are waiting to hear
from children's hospital in DC. Time is of the essence. It has been two weeks since Justice had his last chemo and the new
growth was seen in three weeks time so it has had 5 weeks to grow and by the time we set up with another facility and start
treatment again it will probably be another 2-3 weeks. I feel like everyday is a ticking timebomb and hope that the disease
doesn't spread into a vital part of Justice's brain before it's too late and we can get treatment started again. Wish us luck!
MONDAY, APRIL 02, 2007 09:55 PM, CDT
We made it home for a couple of days not the week that we had been hoping for, Justice has a raging case of thrush. He
is in so much pain. His spirits are so low right now. I packed a whole suitcase full of games, movies, books-he doesn't want
to do anything. There's a good chance that we won't be home for Easter. I haven't told him. We were going to try to go to
the Baltimore Aquarium this weekend for Easter break.
SATURDAY, MARCH 31, 2007 10:41 PM, CDT
We got to come Friday. Justice was so excited. We've been home a total of 7 days since Feb. 6. 2007 so he really needs
some home time. We don't know anything else about the new lesion except that the MD's are pretty sure it's not good but can't
give a concrete answer unless it's biopsied(it's in a place that would be hard to reach) or it grows on the next MRI. We are
supposed to discuss at the next check-up Thursday where we want the scans to go to for opinions on what they think it is and
what they could do for Justice. I started this fight determined to keep Justice upright and strong but our days are arranged
around all the pills that he takes now, when we have to start his IV fluids and the few moments of the day when he seems to
have the energy to be a part of life. I see him sadder and sadder every day because of the things that he can't do anymore
and its worse now that spring is here and the weather is nice and it makes my heart ache for him. How do you fight something
that keeps coming back for a beautiful 7 year old who just wants to be a kid?
TUESDAY, MARCH 27, 2007 11:30 AM, CDT
We are still at UVA. We are having a hard time getting Justice's electrolytes back up to normal. We are still coming up
with a plan for Justice's new growth. They are going to try and tap his shunt to see if it is positive for cancer. If not
we will check a MRI in 4 weeks and if there is growth we will go somewhere else. If there is no growth we will have to make
a decision as to stay or go somewhere else.
Juneta
FRIDAY, MARCH 23, 2007 12:19 PM, CDT
We just got the spinal tap results and they are negative so we are happy for that but the md informed us that an MRI of
Justice's brain was done along with the spine and there is a new spot. I'm not sure Justice understands what that means. I
am so devastated. I feel like he is slipping through my hands no matter how tight I hold on to him or how hard we fight. We
were also misinformed by the nurse practiononer about his chemo. Justice will have 6 more chemo rounds to go through. He is
upset about that. I am a little too but also relieved because at least he will still be treated. We will repeat a MRI in 2
months to see if the spot is growing and the treatment plan will depend on that.
WEDNESDAY, MARCH 21, 2007 10:09 PM, CDT
Everyone has commented today how well Justice looks. His electrolytes are pretty good for once. His bp is OK. 120's/70-80's.
He has done a whole week of math work in one day at school today. The preliminary report on the MRI of his spine is negative-Wha
Hooooo!! We either don't have a report back from the spinal tap or the md didn't think it was the right to talk about results
this evening. Either way, we got to start our last round of chemo today which is a good sign. Justice's spirit is good, he's
actually joked with me a little which he hasn't done much in a long while.
TUESDAY, MARCH 20, 2007 06:04 PM, CDT
Justice just got to his room from his procedures. He's had blood work, MRI of his spine, lumbar puncture and then he had
his picc line rewired again. He's sleepy right now but doing well.
THURSDAY, MARCH 15, 2007 03:24 PM, CDT
I had not planned on sending Justice to school at all for the 5 days that we get to be home. I wanted to concentrate on
letting him rest, catching up on getting the house stuff in order and getting ready for our next hospital stay starting Tuesday
March 20( this is his last chemo round for this treatment). Justice just amazed me. He had already planned to go to school
today. He took his medication (12pills, 2powder mixtures, 1liquid and his nebulizer) in record time and didn't complain. He
was so excited to go to school. I stopped by to give him a choice after I dropped his blood sample off at the hospital an
hour later and he was drained so he came home but I was so proud of him. That's the longest he's been up for 6 weeks. Tuesday
he will get a MRI of his spine and although they say he is remission it is time for the docs to do a lumbar puncture to see
if there are any cancer cells floating around and if there are we will start looking for another treatment. But for now we're
HOME!
WEDNESDAY, MARCH 14, 2007 02:39 PM, CDT
We get to go home today. Justice is so nervous that something will change the decision. He keeps asking me if I'm sure
that we get to go home. He has an added diagnosis of reactive airway disease so he is now on nebs and inhalers. They are pretty
sure Justice had another seizure last night. It was different than the first one. He said something didn't feel right and
then he said the room didn't look right and he had a strange look in his eyes. He will be on alot more medication this time
home. We have to return to the hospital Tuesday March 20th for a MRI, spinal tap and final chemo round.
Juneta
SUNDAY, MARCH 04, 2007 02:35 PM, CST
We are back on the floor. Justice was diagnosed as septic and will be on IV antibiotics for about 10 days. His electrolytes
are still out of whack so for now we just take it one day at a time.
FRIDAY, MARCH 02, 2007 02:05 PM, CST
Justice is back in picu. His temperature went up to 102.6 and his bp went down to 60's/40's, his chest was tight and he
was c/o having trouble breathing with respirations of 30-34. No souce of infection has been identified but he is antibiotics,
dopomine to keep his bp up iv fluids. He also received platelets and blood tranfusion. We are still waiting on results from
his MRI. He is so tired. Keep him in your prayers.
Juneta
TUESDAY, FEBRUARY 27, 2007 07:30 PM, CST
Justice is back in the hospital. We went to the clinic today and because of his falling and short term memory loss they
admitted him for testing, PT/OT and probable bracing of the left leg and maybe going to Klughe rehab again. Needless to say
he is furious. He does have left footdrop.
Juneta
SATURDAY, FEBRUARY 24, 2007 02:26 PM, CST
We got to come home today. Justice was so excited. I think if we had to stay one more day he would have had a break down.
We have to monitor his bp and give him iv medication twice a day over a 4 hour period do he is confined to the house a little
but at least we're home. His weakness in that left leg has really gotten him falling alot. He doesn't have the strength to
go up stairs or get up from sitting on the floor but we'll work on that. Thanks for everyone's support. We have to go back
to UVa on Tuesday for blood work.
PS. I added more pictures to the album
Juneta
THURSDAY, FEBRUARY 22, 2007 07:01 PM, CST
Justice's bp has been stable for the last couple of days while they've been weening him off of the bp meds except today
it went up to 160/101 he didn't have a headache or anything, he just didn't feel good so I'm not sure what going to happen
now.
Juneta
MONDAY, FEBRUARY 19, 2007 05:54 PM, CST
We found out today that we'll be here about another week. Justice is devastated. He just cried and cried to go home. He
is down to two bp pills a day and his bp has been stable today so that a plus. They want to keep him here until after his
chemo to keep him safe.
WEDNESDAY, FEBRUARY 14, 2007 07:09 PM, CST
Justice was cleared to go back on the floor yesterday but there is still no answer to why his pressure is high and why
he had the seizure. Everything is checking out fine. He was started on a clonidine patch yesterday. Today he had another MRI
which confirmed that it was not a stroke. He has had a renal ultrasound which showed normal kidneys and by 4pm his bp was
up to 153/101 which came down with some po clonidine. I'm not sure when we'll get to come home. He enjoys the cards.
TUESDAY, FEBRUARY 13, 2007 10:54 AM, CST
Saturday night Justice's pressure went really high for a couple of hours and he ended up having a seizure. We have been
back in intenisive care since then. The doctors have given us several reasons why he may have had the seizure but are really
sure if any of them are the one and tell us that we may not ever know. He has been left with some weakness like he had after
his original surgery and is working with OT/PT. Hopefully we will get to go out on the floor today. His spirits are down and
he feels like he will never get to go home.
SUNDAY, FEBRUARY 11, 2007 12:19 PM, CST
We've just been told that we'll be here a couple more days. Justice can't seem to get over the diarrhea and his electrolytes
are still out of balance. They've tried to wean him off of IV fluids and give him pills but he ends up taking 7pills 3packets
of powder and one container of clear liquid twice a day and his stomach just can't handle that. On top of that his platlets
are low. He started to have blood in his emesis so he will have a transfusion today. The doctors said they are just going
back to all medicines by IV form for a while to give his body a chance to rest and heal more and try medication by mouth later.
He is really upset that he doesn't get to go to the Wizards game today. Please say prayers for his body and to keep his spirit
upbeat because he is feeling pretty low right now.
WEDNESDAY, FEBRUARY 07, 2007 05:46 PM, CST
Well, just when we thought life was going to be a breeze for a while we were hit with a bit of reality. Justice is in
the hospital as of 2/6/07. His electrolytes are out of balance(a couple of them were near critical), he has to get 2 units
of and he his really dehydrated. He has been vomiting all night, has severe diarrhea and his pressure is low. He is so weak
right now that he can hardly stand on his own. His only thoughts are making it to a basketball game we are supposed to go
to Sunday. His electrolytes have been stabilized with IV fluids but he needs to be able to take things by mouth so he can
go home on supplements and we need to be able to control the diarrhea. Hopefully in a day or two he will get to go home. He
really looks forward to looking at what everyone writes so please keep visiting his site. Thanks. Juneta
WEDNESDAY, JANUARY 24, 2007 02:09 PM, CST
We are packing to leave for UVa and I'm getting a little nervous about the news that Justice is in remission. I'm afraid
that when we get to clinic tomorrow they will tell me that there has been a big misunderstanding and his scan wasn't clear.
Is that crazy or what? Justice hasn't said anything about being in remission. He has only made one statement to me. He said,
"Mom, I'm just not going to worry about this cancer anymore".
FRIDAY, JANUARY 19, 2007 09:10 PM, CST
Justice had his MRI 1/17/07. We just got word today from the clinic that he is in remission. The clinic told me that they
were stunned for this to happen so quickly and if anyone was praying for Justice that it worked. He will continue to receive
all of his chemotherapy in case there was any microscopic cells that the MRI couldn't pick up and he will continue to be scanned
at intervals. The doctor told us we should celebrate!!!!!!!!!!!!!I want to thank everyone who has prayed for Justice. You
would not believe how hard he has worked to stay on top of everything including school. I am so proud of him.
WEDNESDAY, JANUARY 10, 2007 02:21 PM, CST
This is the first day that I have written in the journal. Justice is handling his treatments well. His next MRI will be
January 17. His next chemo round will be January 25th. We have recently started taking Justice to a psychologist. He does
not talk to anyone in class or participate unless he is made to. He also never goes outside to play. His teacher told me this
morning that he actually raised his hand yesterday to answer a quetion. That was the first time. Wa Hoooooooooooo!!!!!!!!!!!!!!!
Juneta
|
