Wednesday, August 12, 2009

Yesterday Caleb and I were off to Georgetown University Hospital for his follow-up CT scan (last surgery was May 12th, so this was his 3 month mark) and an appointment with Dr. Newkirk. The good news is; the tumor has not grown in this period AND Caleb's upper nasal cavity is open (just above his eyebrow and close to the remaining tumor that was left because it was too close to his eye.) Dr. Newkirk was very happy about that. Now the plan is to keep Caleb healthy, as in no sinus infections, to do this he needs to continue his nasal rinses 2X's a day. We will go back to see the doctor in January or February unless Caleb gets a cold and then we need to call the him, with the tumor still there and not really knowing if the original path to Caleb's brain for the meningitis was due to the tumor it is very important that he not have those "streptococcus pneumoniae" germs hanging around in his sinus cavity. Thanks to everyone for your prayers and care for us during this time. As I recount the events to myself or others I am always amazed at God's faithfulness in ALL things.
Even though Caleb is better I will try to keep this updated in case anyone "out there" is interested!! Oh and BTW, he is released to spar and even endure a head shot now and then!!

Thursday, June 11, 2009

We just got back from our weekly trip to Georgetown and will not have to go back for 2 weeks!!
Things look good, are still healing and we were "strongly warned" to watch for any signs of infection and call them if needed.
Caleb will need to keep up with the nasal rinse 2 times a day and saline spray 4-5 times a day but he can spar and lift things over 5 lbs. His brothers will be very happy about the lifting part!! He can now help carry in the massive amounts of groceries we need each week.
Well, I will try to keep other things updated between now and our next D.C. visit, maybe we should go sight seeing instead!!

Wednesday, June 10, 2009

Daniel and Maddie (Heather's 14 month old!) Daniel escorted a friend to her prom so we took these before he left.

Daniel graduated 6-5-09 after 13 years of homeschooling!!! Hurray!!!!

Well I should have posted last Friday because we had another DR visit for "nasal cavity" cleaning or as we affectionately call it the "nose picking"! The Dr. numbs Caleb's nose by spraying stuff in it then uses suction and a long curved tweezer like thing to clean stuff away so he will not get a sinus infection while he is healing. Caleb needs to use a nasal rinse 2X's a day and lots of saline nasal spray so the weekly Dr. visits will be effective. We go back again tomorrow at noon.
As of last Thursday, we will have about 3 more visits, then a CT scan mid-August at which time Dr. Newkirk said he will be able to tell if the tumor is growing or not and based on that we'll know what happens next! Caleb is feeling very good, has been released to go back to Taekwondo but must "take it easy", which means no head shots while sparring!!

Thursday, May 21, 2009

May 21, 2009 by Genoa
I am not very good at keeping this up to date but here's the latest on Caleb....
We went back to GUH last Saturday to have the upper packing taken out and Caleb had taken some pain meds and his antibiotic with only a piece of toast so between that and the "extraction" he got sick when we got home and had a bit of a rough day. Recovered from that and went to church on Sunday then to see Star Trek with some friends (and Mark) after church.

On Tuesday we (Caleb & Genoa) drove back to GUH and Dr. Newkirk cleaned out the surgical site, we will go back once a week for the next 4 weeks to have that done and then that will be followed by a CT scan in 2-3 months to see where things stand. A part of the tumor close to Caleb's eye was left because it was so close to his eye, the pathology report came back as an ossified fibroma, which is what we thought and is BENIGN!!!
Caleb is allowed to return to work in the After School Program at Tiger Claw (his Taekwondo school) but is not allowed to "rough house" ! :-) Also it will be a while before he can resume his own TKD training.
We have had many wonderful friends providing meals for us almost every evening and what a tremendous blessing that has been!!! Thanks so much everyone!

Daniel has played varsity baseball with the Leesburg Christian School Lions for 3 years and this past Friday his team won the STATE CHAMPIONSHIP in O.D.A.C.S. (the League of Christian Schools they are in) for the 2nd straight year!!
I was able to go and watch both games and even go watch Star Trek on an IMAX screen between games (now that was fun!)

John turned 13 last Sunday and we now have 4 teen-age boys.....18, 17, 15 and 13!! What fun!

Thanks to everyone for praying, GOD IS SO GOOD!!!

Wednesday, May 13, 2009

5-13-09, 2:50PM, by Mark
I'm leaving in a couple on minutes to pick up Genoa and Caleb from Georgetown University Hospital. CAT scan looked good. They'll be going back Saturday for an office visit to remove the remaining packing. We're on the road to being done - till the next thing :)
Thanks, Mark.

Tuesday, May 12, 2009

5-12-09, 4:30 PM by Mark
Caleb is in his GUH room, resting and comfortable. They did NOT need to do a craniotomy, but removed the mass nasally. They'll do a CAT scan in the morning to make sure what they got was satisfactory, but he could go home as early as tomorrow afternoon! :)

The Details:
We arrived at 6:AM, went thru pre-op questions and exams by the three teams, ENT(ear, nose and throat), neurosurgery, and anesthesiology. Each team asking their own, often redundant set of questions. It was here that they first mentioned they could be proceeding either of the three ways again [thru the nostril; straight in past the nose, thru the face; or thru the scull past the brain]. We had mistakenly understood that the craniotomy was the only option left, but Dr. Newkirk (ENT) was hopeful that his new stronger tools (broke 4 last time and it was slow going) would help him get the job done. Dr. Douglas (neurosurgeon) would be by his side and very possibly would need to approach from above if Dr. N. couldn't access the whole tumor from below(thru the nose). Then we said our good-bys and they carted him off at about 7:30; we headed to 2nd floor surgical waiting. Our first report from the liaison lady was about 10:AM - she had just come from his operating room. They had begun about 8:30 and things were progressing just fine. Then at 11:30 she reported again that Dr. Douglas was not involved and would not be needed, Dr. Newkirk was able to get access to the whole tumor from below. It would be about another hour. We were guardedly ecstatic! Then about 1:00 Dr. Newkirk came up and beckoned us to the consultation room. He said he had good news and bad news. the good was that he was able to get all the tumor except for a small, hopefully insignificant part close to the eye. The bad was that they hadn't needed (the neurosurgeon) Dr. Douglass. :) :) Even with his better tools he still broke 3 bits, but was able to accomplish in 15 minutes what had taken him 3 - 4 hours last time. He would check in on us later this evening, do a CAT scan in the morning and if that looked good, and there was no spinal fluid leaking and Caleb was otherwise doing well, we could go home as early as tomorrow (probably later in the day).

He is receiving antibiotics and some pain meds for mild discomfort. Genoa is also resting in the lounge chair beside his bed. We are again in GUH's Pediatric ward, 5th floor, CCC building - this time in room 5205. They are watching him to make sure he's comfortable, keeps food down, tolerates the meds and continues to improve. He's tired but able to answer questions and maintains a mild sense of humor.

Ahead for Caleb.
They are biopsying the mass again. Weekly for the next few weeks we'll need to return for Dr. N. to clear out his nose, then every other week for a month or two after that. Then in about 2 - 3 months from now he'll have another CAT scan to make sure all is well in there. By that time he should be back to normal, returning to his regular routines.

Thank you all for your prayers, care, well wishes and meals. God is great and merciful. We love you and are humbled by your love for us.

Monday, May 11, 2009

May 11, 2009

Well we are packing our bags and preparing to leave Leesburg tomorrow at 4:30 AM.
Caleb is as calm as ever and has begun his "feeding frenzy" before he is cut off at midnight! :-)
His request this morning was to have dinner at Chipotle so after co-op (which he went to today to visit his friends - next Monday is the last day of co-op for the year!!) off we (Caleb & Genoa) went to Chipotle in Sterling (our newest-current favorite!) We stopped at Borders so he could get a couple of books he likes to read (Manga) for after surgery while he is still in the hospital.

Thanks to everyone for your continual prayers on our behalf. I just told a friend that I really feel God's grace each time my mind begins down the road of "anxious thoughts", He turns my thoughts to Him and reminds me how very much He loves and cares for Caleb!
I am taking the lap top so will do my best to keep everyone updated via the blog.

Friday, May 8, 2009

Daniel crossing home plate.

He didn't knock over the catcher!

Caleb showing off his ping pong skills

at his 17th birthday party!!!


A little update.....

Last post we were waiting to hear from Dr. Newkirk on some particulars.

Caleb's surgery should take 5-6 hours and is scheduled to begin at 7:30 AM. We will need to be at GUH at 5:30AM. Leaving Leesburg around 4:30AM but as my Aunt Neysa says: "You never can really sleep that well the night before surgery." Mark and Caleb usually can but not me. :-)
We should expect a 3-7 day stay in the hospital.
Caleb will be "recovering" for a couple of weeks and then within 3-4 weeks after that back to a normal routine (and if you know the Allen Fam, "normal" is anything but NORMAL around here!)
Daniel's high school graduation ceremony is on June 5th and our church's "Family Retreat" is June 25th. Also my niece Heather is having her 2nd baby on June 3rd so I am hoping to be able to help with her precious 14 month old Maddie that morning while Myra is at the hospital with Heather and Dave as "Little Davey" is born!! An event filled exciting summer. This is Caleb's last summer before he graduates next June, he really has plans for a fun-filled summer so please continue to pray that surgery goes well and for a quick recovery! Our God is so good and faithful!!!

Friday, May 1, 2009

This is Daniel eating chili when he's a little over 1. We had to get a bunch of photos together for his High School Graduation ceremony on June 5th!! Cute baby!!!

Mark and I decided we should call DR. Newkirk today and before I made the call Jennie from GUH called me to set up Caleb's pre-op appointment which she called back to say he didn't need.
So here's what we know so far; Surgery is scheduled for 7:30 AM on Tuesday May 12th. We need to be there at 5:30 AM. Many questions remain such as how long will the surgery be? How long will the hospital stay be? How long will recovery be once we get home?...and I'm sure some that I can't think of right now.
We met a family in the surgery waiting area when Caleb was in surgery on the 21st, the 27 year old daughter was in the first day of a two day surgery which required a craniotomy due to a tumor on her brain stem. First day was to open the area and was apx. a 10 hour surgery and the next day was even longer to remove the tumor. I am able to follow her progress via the blog and also correspond with Bev her Mom via email. I know God covers every detail of our lives because in meeting this family some of my fears have been lessened and seeing the effect prayer has on Kristin and seeing all involved trust God is truly an inspiration to me. Thank you Kristin, family and friends!!

Please continue to pray for Caleb and the upcoming surgery, he continues to be so brave and doesn't seem fearful at all.

When we were first in the hospital for the meningitis I was doing my devotions the 3rd morning we were there and this is what I read: John 9:1-3
"As he passed by he saw a man blind from birth. And his disciples asked him,"Rabbi, who sinned this man or his parents, that he was born blind?" Jesus answered, "It was not that this man sinned, or his parents, but that the works of God might be displayed in him."
My ESV study Bible explains vs. 3: That the works of God might be displayed in him indicates that God in his mysterious and wise providence sometimes allows his children to go through hardship and suffering so that they can experience God's mercy and power in delivering them. - this was such a comfort to me knowing our God is so good even in our suffering!!

Well that's it for now as soon as we know more I'll post again.

Tuesday, April 28, 2009

This was taken after Caleb was much better
and at the end of his 9 day stay for meningitis.

written 4-28-09 I go with our first ever BLOG!!
Mark, Caleb & I met with Dr. Newkirk for 45 minutes yesterday. Caleb's surgery spot (through his nose) is healing nicely and he is off restriction! (he can be around people.)
The info from the Dr. is a lot to process, after MUCH discussion, lots of questions (and prayer- yes he prayed with us!) he gave us instructions to go home and not think about the next surgery for two days (not so easy to do.) But in an attempt to do that I feel the need to update everyone who has been praying.
The next surgery will be a craniotomy and he is thinking within the next 3 weeks. There are many details that are hard to write about and desribe so I may leave that for Mark to post.
Caleb is truely an amazing kid/young man. We drove home from Georgetown, he and Mark went to Moe's for lunch (our after DR appointments tradition-Moe's or Chipotle) and I met Daniel and drove with him to Lorton for a baseball game (Varsity-Leesburg Christian School-they won 19 to 6!!) Mark said Caleb didn't have a lot to say but seemed to be accepting the surgery okay. Must run for now..........
Original 4-24-09

Caleb is doing well, we got home late yesterday afternoon. DR. only got 1/2 of the tumor, after breaking 4 tools!He went in thru Caleb's nose but the tumor near the brain was very hard so he stopped and will need to order new/stronger tools and then they will need to do a craniotomy to get the remainder. We don't know when but most likely soon, back to the DR. on Monday and will know more then. He is still sleeping now but seems to be resting well. He can't be in crowds or around kids (or folks with germs) so we will be laying low.I am trying not to think about the details or a “Craniotomy” (definition…..cutting into skull : cutting open the skull to expose the brain, especially for brain surgery) but trust God for all of the details!!!They did shave a strip across (ear to ear) Caleb's head in the event they went in Tuesdya but you can't tell. Thanks for all of your prayers, please keep praying!!!
Original 4-17-09
Hi Friends,
Just wanted to let you all know the latest on Caleb.
The infectious disease DR. stopped antibiotics on Friday and the surgeon pulled his PICC line on Monday (Caleb was very happy about that!), we have to be at GUH on Tuesday (21st) at 9AM for an 11AM surgery, it will be at least a 5 hour surgery to remove the tumor (which is benign!) and longer if they call in the neurosurgeon and need to go in through his head. After talking with the head and neck surgeon we realize the surgery is more extensive than we thought. He showed us a pic from the CT scan that shows the tumor from an angle that shows it extends to his upper right nasal sinus cavity (like above your eyebrow) close to his brain. The concern is leakage of spinal column fluid after it is removed so they will need to “patch” that area and if they can’t get it out through his nose they will cut down the side of his nose and if that doesn’t work they call in the brain surgeon. Dr. Newkirk will not know until he is doing the surgery.

The DR said to plan on at least a week in the hospital, he explained to Caleb that when your brain is involved they watch you very closely and that’s why the extended stay. Caleb is doing well and facing the upcoming surgery “boldly”, trusting God and not seeming anxious, planning his 17th birthday party for Saturday (his actual BD is the 20th) and doing Taekwondo and hanging out with friends as much as he can this week. Oh, and sleeping a LOT!!!

Mark and I are very pleased with this surgeon and also the neurosurgeon. Georgetown University Hospital has been wonderful to us and we feel we are right where God wants us to be. We have great confidence that He knows all our days, loves Caleb more than we ever could and knows the plans He has for Caleb. We are truly blessed to have Caleb as one of our sons-as well as the other 3!!

So…..if you happen to be one of our praying friends, J please keep Caleb, us, and the surgeons in your prayers in the next few weeks.

We’ll keep you updated as we can.

Genoa & Mark and the boys

OH…and for any of you who didn’t know the first part, Caleb spend 9 days in Georgetown with bacterial meningitis , it was a pneumococcal virus that traveled to the brain via the tumor, which we knew nothing about until they did the CT scan to see why he was having a horrible headache, blurry vision and sick to his stomach. Praise God we got him to the ER very quickly where they diagnosed him and send a helicopter for him to transport him to Georgetown on March 19th. We came home from the hospital on the 27th with a PICC line and 2 more weeks of IV antibiotics.