December 18, 2010
We are home with Josie and we were able to go to church as a
whole family yesterday! She is stable
and holding her own, so the doctors were comfortable with her going home. We are so thankful that we will get to spend
Christmas all together as a whole family.
The girls couldn’t wait to see Josie – they had not been up to the
hospital since she was admitted for this round of chemo, so it has been a long
wait. In one of Reese’s papers from
either church or school, one of the questions asked was “what are some things
that are hard to wait for” – her answers were things like “Christmas, new snow
pants, going home”. Then the next
question asked “What has been the hardest thing lately to wait for?” – her answer:
“My sister to come home”. Needless to
say, we are all ready for Josie to be home.
The stay at the hospital this last time has been a bit more
stressful. The chemotherapy that she
received was quite strong and ended up wiping out her blood counts. For a few days, she only had around 100 white
blood cells working in her body when the norm is around 10,000. This is quite typical for chemotherapy, and
they are constantly monitoring her, but it is still very nerve wracking. Josie’s hemoglobin dipped twice and she ended
up needing 2 transfusions. After she receives these transfusions, she always
seems to glow with a pretty shade of pink all over her body. The first time she had one, I thought
something was wrong with her, so I kept asking the nurse if she was okay, but I
was assured over and over that it is absolutely normal. Now I don’t worry, I just enjoy her pretty
pinkness!
Josie ended up giving us two scares during this time
period. The first was that she ended up
with a bacterial infection in her blood.
We are not sure where she picked up the bacteria – it could have been
her broviac line or it could have come from something in her sinuses, we won’t
ever know. As soon as it was discovered,
she was immediately put on antibiotics – 3 in fact. They put her on several types that cover a
general/broad spectrum of bacteria’s until the culture that they took grows
enough in the lab to let them determine what exactly it is. This seemed routine and no one appeared
terribly concerned – until later when we found out it was an extremely
dangerous bacteria. Thankfully they had
caught it early and were able to get it cleared up before it became really
bad.
The second scare – which was scary right from the start, was
that her sodium counts went really low.
A normal level is around 130-160, Josie’s started going down first to
the 125’s, then the 120’s and finally to 115.
The doctor that was on during this last week informed us of how serious
this situation was and let us know that she had called in the kidney
doctor. It appears that Josie had a
situation where her kidneys were getting rid of too much salt. After trying to correct the sodium issue on
the Hem/Onc floor, Josie’s sodium kept going further in the tank. Finally, the Hem/Onc doctor had Josie
transferred to the PICU (intensive care) for further treatment. In the PICU, the doctors can be a little more
aggressive with the treatment plans because they can have a nurse in her room
watching her more carefully. They did a
great job of getting Josie’s sodium turned around. They ended up giving her this medication that
helps sodium stick to the cells and then gave her a pretty high dose of
concentrated sodium. The nurse that
Josie had when we got up to the PICU was a bit nervous about the concentrated
sodium and was very thorough with checking and rechecking the rates before he
gave it to her since this type of sodium can be toxic if given
incorrectly. We were thankful for his
thoroughness! Her sodium is now holding
strong in the normal range. On Saturday,
we talked to her primary oncologist and found that the real reason for her salt
wasting was due to the steroid that Josie has been on since her second surgery
and how it affected the adrenal gland on her kidneys. They have since stopped giving her this
steroid and balanced her sodium with other medications.
The funny thing about this sodium problem is that the
doctors were perplexed by Josie’s demeanor.
For a typical 5 month old with a sodium count of 115, the child should
be extremely lethargic, if not close to comatose. Josie on the other hand doesn’t like to be typical,
so throughout all of this she was happy, wide awake and flashing that sweet,
sweet smile. In fact, she wouldn’t even
take a nap, she would stay up from 8:30am
until 2:30pm and then she would
finally give in to sleep. When the
Hem/Onc called to tell the kidney doctor that Josie’s level had dropped to 115,
she asked if Josie was unresponsive and was blown away that she was wide awake
and happy. If you’ve seen the latest
pictures on facebook, those were taken the day that her numbers were the
lowest. She is a funny girl!
After Josie’s sodium numbers leveled off, she was then sent
for an MRI to check to see if there was something that had moved or changed in
her head to cause this sodium wasting. She
did great for the MRI and this time she was stable enough to not need a
ventilator during the scan. The results
of the MRI were only slightly changed.
The tumor did not grow any larger from her previous scan in November,
but it didn’t really shrink either. The
radiologist said that it was maybe 2-3 millimeters smaller, but not
significantly smaller for the types of chemotherapy she has undergone. What does this mean? The chemo is at least keeping it from growing,
but it did not shrink like they had planned.
There are varying opinions about the next stage for Josie, depending on
the doctor. Josie’s case was taken to
the tumor board (a group of up to 40+ specialists for tumors) and there was no
“right” direction, but several options, all with pro’s and con’s.
At this point, we are planning on going ahead with 2 more
rounds of chemotherapy – the first will be a 3 drug cycle and then the second
round will be the 4 drug cycle that she just completed. This would mean that Josie will be in the
hospital again for 3 weeks at a time to be observed for complications. There are always the risk factors of
complications – no matter which route we go.
Please pray with us that she will not get another infection and that she
handles her counts going down to nothing again.
We would love for someone to tell us that this is exactly
the right route, but ultimately, we have to make the decision with God’s help,
and it weighs heavy on our hearts. The
one thing that we have not lost sight of though is hope. Our desire is for Josie to be cured and be
rid of this tumor and for that we are praying intensely. We also know that there is a greater hope
beyond this world and we know that we must hold on to Josie as best we can in
this world, but hold her loosely too. At
this point, we are just enjoying each day with her and she is indescribably
precious and sweet.
This update has taken me 4 days to write, so I need to wrap
it up. Continue to pray for Josie and
for us as we wade these deep waters. We
have been so blessed this Christmas by so many – it will truly be a special
year!
Merry Christmas,
Marc & Darcia
