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April
1,
Xander's mobility is
a tiny bit better today. No fever and lots of giggles have been the theme of the day.
March
31,
Well isn't that the way things go. Xander's mobility has been dropping rapidly. I talked to the Dr. about pain
pills and she had consented yesterday to Tylenol. We need to avoid pain pills whenever possible because they
could hide a approaching fever, and with chemo a fever is a emergancy. Just Just before I gave him the pill I took a Temp. and found him to be pushing the
limit of allowed Temp. The Dr. said no pill and stay up Thursday night to watch his temp. and condition. This was 8:00 Thursday
evening. By 9:00 he was 100.8 and we (Xander, myself and his sister Nichole) were headed for Sacred Heart Emergancy. We got
there at 9:15 and left 7 hours later. This was mostly do to incompetence on the part of the Tech who attempted access his
port. He swore that he hit the port dead center when he finally (2.5 hours after we arrived) made his first attempt
at accessing the port. Xander yelled in pain (normal port access isn't comfortable but numbing cream keeps it from being
painful) this was far from normal. As he begins to inject the saline into Xander's port Xander
began to complain loudly of burning and pain. together we ordered this man to remove the needle and stop. When the Tech attempted
to pull blood from the "port" he was unable to DUH. It was obvious to us that he had missed the port and was injecting saline
into the flesh of Xander's chest. There was even a raised section where the saline had settled. The tech went off to ask the
charge nurse what to do at this point. We grabbed our nurse and told her of the mans horrible attempt, and she went to get
the Dr. The Dr sided with the Tech and said there might be something wrong with Xander's port. A port infection is a critical
problem. Blood had to be drawn though either from the port or a vein, and Xander's veins are tiny and roll. I left this choice
up to Xander. The Dr. said this Tech was the only certified person at the hospital at night to access Xander's port, and that
he did these all the time. Yeah sure!!!! Xander chose to give him the benefit of the doubt and let hem attempt access with
the understanding that at the first sigh of pain he would stop. Sure enough he stabbed in the wrong location again and Xander
stopped him fast. At this point the Tech and the Dr. seem to feel Xander is being a bit of a baby, and there is probably a
problem with the port. They tell me that they will report the port problem to Doerbecher to deal with and our Wonderful nurse
Anne put an IV in a wrist vein for Xander.There was no fussing or complaining with this even though the vein rolled and she
had to fish. Xander is not new to pain, but he knows what port access should and should not feel like. The result was that
his counts are good now. On Tuesday he will see Doernbecher for counts to be sure they stay that way. I've also been told
by Doernbcher not to let Sacred Heart staff touch he port anymore. They can access a vein if they must. His port is way to
dangerous if handled by incompetent Techs.
March 29,
Xander is doing great. His energy is dropping, and he is having
muscle weakeness in his legs, but he doesnt apear to have blood issues at the moment. His skin is pink not grey, and there
are no signs of platelet problems. We get counts done next week to check how this new dose of meds is affecting them.
March 24,
Dr Hsu called today. He is concerned looking over Xander's over
all history on the Chemotherapy that Xander's blood counts could drop more then acceptably allowed on this phase of chemo
over the next 2 weeks. We are having blood counts done in two weeks to check as well as closely watching for signs of transfusion
need. You would be amazed at the things we now need to watch for. We also will need to restrict his contacts in case of a
drop in his ANC count.
March 23,
The nurses and Dr.'s are talking about Xander today. He had spinal
chemo today. For the last 2 1/2 months we have only done this will full sedation because of adverse reaction he had to a medication
in Dec. that led to a spinal headache. We attempted a conscious sedation again this time. Normally he would have had
two "tubes" of versed and two "tubes" of phentenol (sp). The Versed makes him only barley
aware of what's going on around him. The Phentenol is a pain killer to prevent his feeling the procedure to severely.
This time after only one "tube" over Phentenol Xander was relatively comfortable and they completed the procedure that
way. It was the talk of the medical staff because that is very abnormal. Even with older children two is the norm. Xander
is very young and not a mild child. The result was a happy young man who recovered more quickly. His blood counts went
up slightly from Tuesday. Only his red blood cell count dropped. It’s very close to transfusion level now. The
meds he started today very well may drop that even more. He can go to open public places, but not closed rooms with people
for example a class room or theater would not be allowed. We are limiting visitors still because no one is sure what way
his blood counts will go.
March 22,
Xander just made if for his blood counts to pass. He starts maintenance
chemo on Thursday. This isn't "back to normal", but the meds. are much easier for Xander to tolerate and he can resume most
of his pre cancer activities.
March 16th
Xander came home yesterday. His energy is crazy!! Its not a natural energy, he has a frantic
feel to his not stop talking and moving. I'm hoping we don't have more issues. In theory that was the last really bad spell
before maintanance. He is showing more platelet type bruising today so there is still a risk of transfusion there. We get
counts done again on Tues. if there are not signs of need before then.
March 15
We still don't know if we are going home today. Xander was given red cell last
night. They really gave him energy. He spent much of the remaining evening tricycleing around the ward at high speed. A huge
improvement from laying in bed barely able to stand. We were told by his nurse that although his platelets are still falling
slowly, his red count is up do to the transfusion. His ANC is up also, but I don't have that number yet. Xander was delighted
yesterday to find his favorite nurse assigned to him. Mandy always takes the time to brighten his day wether its tricycleing
around the ward together, or a fast game of go-fish.
March 14
Xander is doing ok today. He is eating and drinking great. The counts aren't
doing as well. This afternoon he will get a red cell transfusion. His ANC went down again, and is at only 285 today. There
is talk of going home in the morning, but we will see how thing progress
March 13pm
Xander perked up upon
arrival at Doerbecher, and demanded food. Hi Dr. here is optimistic that he will be able to go home soon although his red
cell count is near transfusion level.
March 13.
Xander's fever is gone, but he has refused food and liquid
for
over 24 hours. The poor guy looks awful. We are transporting to Doerbecher tonight since his counts are still dropping
March
12 pm
Xander's ANC is to low to go home with a fever. We will be spending the night at Sacred Heart. The poor guy is not
allowed any visitors except parents.
March 12
Xander's fever is still here, and the Dr. said to head into
the ER for work. If his counts are too low we wont be going home
today.
March 11th pm
The Dr said to check
back on Sunday to see if there are any changes.
March 11th
This morning Xander's temp was at 102.2. Way above
tolerable levels.Our Dr check in time is 3 hours away. His temp. went down but I'll write back after the check in time. Platelet
bruising is starting to show but not petici bruising so its not that bad yet.
March 10th
Well it was another
all day at Sacred Heart Hospital in Eugene. Xander's temperature went up to the 100.4 level and we drove in not knowing if
we would be transported to Portland or not. I'm frustrated with the quality of service we receive from Sacred Heart. The nursing
staff is very efficient, but our DR. miss read Xander's counts and had to call Doernbecher multiple times to correct issues
that myself and the Nurse found. Speaking of which Marla in the ER is a incredible nurse. The result of 4 hours in ER is that
although his counts are dropping dramatically his ANC is not yet at a transport level. One of the Chemotherapy he is on can
and is causing a fever. His platelets are down to 53 from Tues.'s 104. All Dr's agree he will probably need platelets before
mid. week if not over the weekend. His red cells are back to almost transfusion levels. We keep reminding ourselves that as
soon as his counts come back up (1 to 3 weeks) he will start maintenance medication for the next 1.5 years. He does very well
on those meds. Anyways Xander came back home after 4 hours and many Dr. phone calls. His temp. continued to climb, but the
Dr. is sure it is only a reaction to the Citarabine. Tomorrow we check back in and make further plans on how to deal with
this problem.
March 8th
We arrived at Doernbecher at 9:30 this morning. Everything went relatively smoothly,
but we didn't leave until 5:00 in the afternoon. When he arrives needing a transfusion the nurse takes a sample of to send
off to the lab for a type and match testing. After the results are back on that it takes 2 hours for the bank to get the to
Doerbecher. The red cells are dripped in over the next 4 hours. It’s a very long day, and Xander spent most of it in
a zombie like state. He was so terribly weak!!!! After having his spinal and being allowed to eat again he perked up very
well, and is back to his busy self.
March 7th
Xander's counts were not good, but exactly what I expected.
His skin had turned grey and his lips are a perfect match. His red cells have dropped to a transfusion level. He will be getting
red cells with his chemo tomorrow. The platelets are also dropping, but not yet to a level requiring a transfusion, and his
ANC is still dropping, but still at safe levels.
March 6
Xander is feeling ok today. His energy is dropping
along with his appetite. Last week his main protein source was Hot wings. He was eating 20 or 30 a day. In the last 3 days
he has had 4. I'm having counts done on him Tues. with concern that he may be needing a red cell transfusion done on Wed.
March
3
This evening was spent at Sacred Heart Emergency room. Xander had ran a very small fever all day and at 6:30 it hit the
magic 100.4 that means a automatic emergency room visit. Thankfuly his counts were ok at the emergency room so we did not
transport to Doernbecher. His temperature went up though while we were there and he developed some nausea. This meant extra
tests, a chest x-ray and urinalisis. The chest x-ray showed early stages of Phemonia. For anyone else this would not have
meant a emergency room visit. The white cells would have taken care of the problem. Xander go lucky, and only had to have
IV antibiotics through his port before going home.
March 1
Xander's chemo went well today. It was a incredibly
long stay at Doernbecher. We arrived at 9:00 and left at 4:30. Xander was lucky it was Wed. He was able to participate in
Doernbecher bingo. He came home with 3 wonderful prizes. For me the prize was simply no spinal headache and his counts were
not as bad as we expected at this point
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