We would like to apologize for not updating the site sooner, but to say the least, we have been
exhausted traveling back and forth from Florida's coast to coast for hospital stays and doctor appointments.
Today,
Princeton is 45 days post transplant. We are thrilled with how well he is doing. God has had mercy on Princeton
and all he has endured thus far. He is active and playing and really enjoys his time at home. Princeton continues
to be on a special low microbial diet and "isolation" until October 10. We seem to have adjusted to his diet,
but it does require some planning when we are at the hospital all day and on the road. Everything he eats needs to be
individually prepackaged or freshly prepared. He cannot consume leftovers, restaurant food, raw fruits and vegetables,
etc. Princeton has to wear a mask every time he leaves the house including if he goes outside in our backyard.
He does well with keeping it on and not complaining. Praise God! This limits what we are able to do,though.
He cannot be around large crowds, school age children, most public places, and we have to limit the amount of visitors we
have. Anyone who travels by airplane to see Princeton has to wait 2 days before visiting him to ensure they have not
contracted any germs from the plane. This also means, we cannot get sick either as we are Princeton's primary caretakers.
It is extremely critical we all remain healthy and limit our contact with others.
Princeton is still
not consuming enough fluids throughout the day. For his size and age he should intake about 36 oz. He has been
taking in at most about 20 oz per day and many times less than that. It is crucial he does not become dehydrated for
the sake of his kidneys. The high dose chemo was very hard on his kidneys. If he were to become dehydrated, his
kidney's would have a hard time recovering. This being said, every Friday evening Home Health delivers a box filled
with fluids, gloves, alcohol swabs, saline flushes, heparin flushes, iv lines, batteries and a $4000 pump for the week.
Each night we have to hook Princeton up to iv fluids for 12 hours.
During the course of Princeton's
bone marrow transplant, he underwent many, many things. We praise God for his progress considering all he experienced
especially at such a young, innocent age. This is a portion of what Princeton went through:
9 tests (X-rays, CT Scans, MIBG, etc.)
1 surgery to replace one of his broviac lines
4 IVIG infusions (used for boosting the immune system)
4 days of high dose chemotherapy
2 blood transfusions
9 platelet transfusions
13 days
of ribavirin nebulizer treatments to treat the Parainfluenza
8 days of fevers 101 and higher
3 days on oxygen
14 days of severe neutropenia (WBC 0)
34 days
of total and complete isolation
25 days on pca/morphine
19 days mucositos (internal ulcers along the g track)
Now that Princeton has completed the bone marrow transplant,
we are onto radiation. Princeton began radiation on Thursday. So far he is doing well. We have to be at
the hospital by 8:30am Monday thru Friday for the next two weeks. He is receiving 12 radiation treatments. 8 fields
in his abdominal/adrenal gland area are being radiated. We thank Jesus the doctors decided not to radiate Princeton's
head, where he had a large mass. They felt the risks involved with doing so were not worth the benefits of not doing
it. However, there will still be permanent effects of the radiation. Due to the location of the radiated areas,
Princeton's spine will probably be shortened by about a centimeter and his organs, although they will function normal, will
be smaller than average. Having radiation at Princeton's age can be hard, because he still growing and developing.
In addition to the permanent effects of radiation, his risks of future problems is also elevated. Princeton will NEVER
be in the clear of cancer. The fact that Princeton has already had cancer increases his chances of developing a secondary
cancer at some point in his life. His chances of getting cancer again is 3 times greater than the average person.
With radiation added to his regiment his chances of developing a secondary cancer at some point in his life, probably in his
later years, is increased an additional 5 times greater than the average person. Therefore, the risks for secondary
cancer at some point is very high. However, we continue to believe according to God's word that cancer will not return
a second time. God has continually protected Princeton and we know He will continue to do so for the rest of Princeton's
life. Matthew 6:26-27,34 says, "Look at the birds of the air; they do not sow or reap or store away in barns, and
yet your heavenly Father feeds them. Are you not much more valuable than they? Who of you by worrying can add
a single hour to his life?", "Therefore do not worry about tomorrow, for tomorrow will worry about itself.
Each day has enough trouble of its own." We pray Princeton will continue to do well with the radiation. After
receiving a few treatments he could experience nausea, loss of appetite, fatigue, etc. We also pray Princeton will become
accustom to the daily treatments and he will be able to hold still for the time it takes for the doctors to complete the radiation.
Each treatment is 15-20 minutes in length. At this point, Princeton is sedated each morning before beginning the radiation.
It is not ideal to sedate him on a daily basis. A mesh form was made and he received 3 permanent tattoos on his belly
to keep him in the exact same position every time he is radiated. However, the slightest movement Princeton makes could
offset the designated areas to be radiated causing damage to other areas of his body. That is the reason for the sedation.
Princeton continues to "limp" and put more force on his left foot and leg. The doctor had an X-ray
done to see what is causing this. Although the X-ray showed no indication for why Princeton is limping and complaining
of back pain, it did show some abnormalty. Princeton had a lot of tumors in his hips, back, sternum, and in his bones
overall. Although the tumors responded well to the treatment, there is transparent areas in his bones where the tumors
once were. Essentially, he has hollow areas or holes in his bones. Due to the fact the integrity of his bones
has been compromised in specific areas he is fragile and runs the risk of easily fracturing weak areas. This does not
mean he cannot run and play like a 2 1/2 year old should, but we do need to be cautious. Doctors will also have to watch
these areas closely to make sure no tumors metastasize. Considering he is still growing, his bones should mend themselves.
We pray Princeton's bones will heal quickly and completely and there will be not further issues.
Last
week we celebrated Ocean's first birthday. We are so thankful and blessed to have him. He has been a trooper and
joy during this time. Princeton was diagnosed when Ocean was barely 4 months old. By God's grace and mercy we
have been able to keep Ocean with us this entire time. When we first learned of Princeton's prognosis, we thought we
were going to have to give Ocean to a family member to care for him or that he would be passed around from family to family.
It was heartbreaking to think we would be forced to hand over our newborn, so we could care for Princeton. However,
God allowed us to find a way to care for Princeton and Ocean at the same time. In fact, we have been able to keep Ocean
and Princeton together with the exception of the bone marrow transplant. Ocean is sweet and kind, full of smiles and
laughter and he loves his brother. Ocean has gone through a lot too. Unlike most 1 year olds who are eager to
learn new things and explore, Ocean spent a majority of his first year hanging out in hospital rooms where he could not crawl
around and be free to explore. His days consisted of being held and laying in bed with Princeton. God gave our
family Ocean at the perfect time and knew he would bring us a plethora of joy and happiness in the midst of a storm.
We are so grateful Ocean is on track developmentally and has not fallen behind due to the circumstances. Once again,
God has had great mercy and shown His face.
We continue to thank God for each of you. From the bottom of
our hearts, we appreciate your continued prayers and support. Just as a reminder, shirts in honor and support of Princeton
can be purchased through August 31. The link to purchase shirts is
http://www.customink.com/signup/16tii6e3. Also, we have added new photos to the photo gallery.
Psalm 91:
Princeton dwells in the shelter
of the Most High
and he rests in the shadow of the Almighty.
Princeton will say of the Lord, "He
is my refuge (protection) and my fortress (security, stronghold),
my God, in whom I trust."
Surely he will save Princeton
from the fowler's (hunter's) snare (trap)
and from the deadly pestilence (disease, harm, evil).
He will cover Princeton with his feathers,
and under his wings he will find refuge (shelter, protection);
his faithfulness will be his
shield and rampart (defense).
Princeton will not fear the terror of night,
nor the
arrow that flies by day,
nor the pestilence (harm, evil) that stalks in the darkness,
nor
the plaque that destroys at midday.
A thousand may fall at his side,
ten thousand at his
right hand,
but it will not come near him.
When Princeton says, "The Lord is my refuge
(protection),"
and he makes the Most High his dwelling,
harm
will not overwhelm him,
disasters will not come near his tent.
For he will command his
angels concerning Princeton
to guard him in all his ways;
they will lift Princeton up in
their hands,
so that he will not strike his foot against a stone.
"Because I love
Princeton," says the Lord, "I will rescue him;
I will protect him, for he acknowledges
my name.
Princeton will call on me, and I will answer him;
I will be with him in trouble,
I will deliver him and honor him.
With long life I will satisfy him
and show him my salvation (protection from harm)."
My 
