27 October 2005
November 4, 2005
Four down, 26 to go
JJ started his road to recovery on October 31. His travel begins at 5:15 a.m., Monday - Friday, for a 7:00 a.m. appointment at the Wallace Tumor Institute in Birmingham and over the course of the next six weeks, will undergo 30 sessions of radiation and daily chemotherapy treatments. With four days completed, he is showing some minor fatigue but remains in high spirits.
He is further taking several different types of medications but one of note would be his steroids. This medication allows the swelling to remain minimal but the side effect is the weight gain. Since starting on the medication (less than two weeks ago), he has gone from 39.1 lbs to 44.7 lbs. There are other side effects in the form of constipation, sleep loss and upset stomach, but again, his spirits remain high.
November 5, 2005
TGIF
Just completed session 5 this morning. JJ did great! He said he wanted to stay awake for the entire session and DID! No more "Magic Milk" to knock him out. No more having to wait until after treatment to eat or drink. Performed like the true champ that he is. I'm not sure I would care to have my head strapped to a table via a face mask for 10 minutes. Took some bravery to do and getting it from a 5 year old says something about his personality. The staff were quite impressed and we're VERY proud of him. The doctor has dropped his steroid medication to twice a day. We dined at the Cracker Barrel for breakfast afterwards. Don't ask what he ate, let's just say it was plenty of everything. JJ will start back to school next Monday after his treatments and Jim will return to work. JJ of course is still getting fatigued from the treatment and is currently napping. We're looking at an easy weekend with no major plans other than getting our family Christmas photos done tomorrow and maybe some shopping. Family time is of course high on any list and we'll continue to swamp him with love.
November 8, 2005
7 down, 23 to go
Seven treatments down, 23 more to go. JJ continues to make us proud with his treatments and medications. He knows no fear for the treatments and practically jumps up on the table. Stays nice and still for the entire time. We watch from cameras in an adjacent room and are able to communicate with him via intercom during his sessions. Today, he had an extended time on the table (5 minutes extra) for a couple of x-rays which he took like a true champ. No complaints. The doctor did his weekly visit with him afterwards and cut him back to 1mg of steroids a day (started at 4). JJ has also added another pound and a half since the 4th. Up to 46.1lbs. The doctor says some of it is water retention and he should lose it when he comes off the medication. Tomorrow is more of the same plus some lab work & chemotherapy clinic. We're hoping to get the neuro clinic to look at him at the same time otherwise he will have to be seen on Thursday. Maybe the stitches can come out. We'll see. We've also contacted Johns Hopkins Hospital in Baltimore for a second opinion, which they have accepted at no charge. We will be contacting the doctors/clinics at Birmingham Children's Hospital to forward all information, etc. This will not be immediately completed but wanted to let all know. Will pass on the information as we get it.
November 9, 2005
Like a Big Boy
Treatment went well once again. On and off the table in 7 minutes. Right after treatment, we went over to clinic 8 to see the doctor. Prior to being seen........... lab work. Two vials had to be taken and wouldn't you know that this young man came through with a needle stick without a single tear. He did say "Ow" (but who doesn't when getting stuck?). Acting in such a brave fashion earned him an ice cream for the trip home. Doctors seem happy with JJ's progress. Examination shows more lateral movement (tracking) in his left eye. Nice to see signs of improvement, other than what we may see. JJ further received an additional prescription today. The medication he is currently on leaves him susceptible to a type of pneumonia. Therefore, an additional pill for Friday, Saturday & Sunday only to off set the other medication. The clinic did keep us longer than what we anticipated and we did not get home until 12:30p.m. So......... Daddy and JJ decided that being home was more beneficial than work or school. Call it a "snow day". All in all, another good day.
November 10, 2005
Mommy Time
For the first time since this began, it was just JJ and Mommy making the trip. Mommy actually enjoyed the wait for treatment, as she got some lovely cuddle time with her boy. JJ is taking all of this in stride, and keeps looking at the technician's computer system for his picture to pop up (which means it's his turn). Part of the routine is making sure that it is, in fact, the picture of JJ and Buddy - a little stuffed thing he's had his whole life and who now travels with him everyday. The visit in the neurology clinic indicated that his stitches may be able to come out on the 21st.
November 11, 2005
Two down
Two weeks down, four to go. JJ and dad got to Birmingham about 20 minutes early and the techs put him right on the table. In for therapy at 6:43 a.m., out at 6:50 a.m. Absolutely no problems. JJ knows just what to do and tackles it with ease. He is truly our hero. Being it a holiday, JJ and Dad were making great time home until an Alabama State Trooper stopped and introduced himself to us. I don't know if it was professional courtesy or JJs charm, but he allowed us to proceed without any donations to the state. Nice guy. We took the rest of the morning painting JJs tree house (which actually came out quite nice) and movies this afternoon. The weekend has nothing planned other than continued love and time spent together.
November 15, 2005
Cut back
In an attempt to not sound routine............ I can't. JJ once again is handling his treatment with flying colors. On and off the table with zero problems. JJ is adjusting back to his own self in the aspect that I had to wake him (4:40 a.m.) this morning for the trip. When this all first started, we couldn't get him to sleep. I take it to be a good sign. He did see the doctor today. His weight is up to 48.5 lbs and his steroid medications has been cut back to half a mg a day for the next three days and then half a mg every other day. The doctor also noted that both his eyes seem to be much straighter. "It would appear that the treatments are shrinking the tumor". Definitely a good sign but was expected. We still ask the Lord to touch this child and remove the remainder of this illness upon completion of the treatments (if not before). Treatment again tomorrow followed by clinic (and probably more blood work) at Children's Hospital.
November 16, 2005
In the News
Well, our little man has made the news again. He was in the Huntsville Times, Madison Spirit Addition this morning which in turn led to a call from Channel 48 (NBC). Please see the "Home" page for the links. Both reports were done well and we are grateful for their support in running his story. I can't wait for the day when I can call them back for a follow-up story and inform them of the miracle and his excellent health. Treatment went well again. He just does what needs to be done without complaint. Very proud of him. He is still showing signs of fatigue from his treatments and probably getting up early at 4:30 a.m. doesn't help either. In this aspect, Diana and I thought it best to keep JJ out of school until all this is behind him. Three and a half weeks, Christmas break, and then he goes back. Until then, Diana has contacted the school and requested a teacher come out to the house for his continued education. His clinic went well. No bad news to report and the doctors seem satisfied with his progress. The lack of a tear while having blood work at the lab cost Mommy a small (not a piece of) chocolate cake, which JJ very much enjoyed on the way home.
November 17, 2005
Yawn
Only Mommy and JJ today. Daddy stayed home so he would be able to get an early start to the work day. Treatment now appears to be a common thing. It takes longer for us to drive from the house to I-65 (10 minutes) than it does for JJ to get on the table, receive his treatment, off the table and out the door. The staff continues to praise him for being such a big boy. After the regular treatment, Diana and JJ kept his consultation with the plastic surgeon (for his throat). We figured with a three month wait, it couldn't hurt. The boy actually fell asleep on the examination table while waiting to be seen. The doctor wants to wait and see if his speech is connected to the current illness or not. He also suggested a device similar to a "retainer" that can be placed that would assist in improving his speech. More on that to come as the details become available.
November 19, 2005
Half way
JJ is half way to being done with his treatments. Three weeks down, three to go. His voice appears to be a little stronger and is getting back to being himself. He is down to 1/2 mg of steroids every other day. Plus and minuses to that. He is sleeping much better but is losing his appetite some. I suppose that is actually a good thing. The way he was putting food away........ Today, we traveled to Birmingham not for treatments but to the Zoo. JJ loves seeing the animals and everyone had a great time. On a personal observation, I was out in the back yard Thursday evening, looking up at the heavens and basically talking to God when suddenly a very bright and a second plus long meteor streaked across the sky. Thought it impressive and made mention to Diana. Right before bed, I took Tripper out and did the same thing. Once again, an impressive meteor shot through the sky. Coincidence? Well, Last night, did it again, and yes, another one. Maybe I'm reaching but I look at the night sky quite often and do not see that number in a month much less two days. To top it off, each time I was asking God for his healing of JJ. Coincidence? Not to me. Late entry - 9:15 p.m., make it four in three days!
November 22, 2005
Rainy day
JJ started week four on a wet, rainy, cold day. Dad and JJ left a couple of minutes early to avoid any traffic problems and managed to get to the institute around 6:30 a.m. It appeared that the institute trains students since there was an additional 4 people on hand. With the training of students, comes delay and JJ did not get into treatment until 7:15. Just the same, he handled everything well and with no complaints. On the way out of the city, Dad was given a reminder on why we do the treatments first thing in the morning. Traffic coming in was at a crawl with several accidents to slow the commute. Piece of cake leaving though and I think we'll continue to do the 7:00 a.m. treatments. We actually beat the traffic mess. Diana and JJ are currently on their way down for Tuesday's session. JJ has additional clinics after treatment this morning. Everything was bumped up a day due to the forthcoming holiday. It is very possible that his stitches may be removed this morning and may even be taken off his steroids. Lab work as well. Can we say, Ice Cream and Chocolate cake?
November 22, 2005
Update
Back from treatment and clinics. Treatment is being routine as routine may be for something like this. JJ is starting to show a lack of hair behind both his ears (two of the six points). The other four points still have hair therefore so does daddy although it looks like a high & tight coming soon. With winter coming too. brrrrrr. Well, if he has to do it, I guess I can too. The neuro oncologist (Dr Reddy) seemed quite pleased with JJs progress (ie., a thumbs up at mommy) while she was examining him. Lab work as well. No crying at all. Stitches came out last. Oh, did I mention he didn't cry for that either? I really don't know if one can be prouder of a child than I am of JJ. This isn't some basketball game where he scored 50 points. This is a child that, through his actions, make many adults look like children.
November 24, 2005
Turkey Day
A day away from Birmingham with no treatment today. Yesterday was an early on and off the table with absolutely no problems. Back to it tomorrow but since JJ is one of the few to actually be seen, his appointment is not until 8:00 a.m. This works out quite well since his cousin Olivia, Uncles' Tom & Alan, Aunt Jacquie, Great Aunt Neta, both Grandmas and Poppa are in town for the holiday. So....... tomorrow, daddy will go to work, Grandma and Poppa will watch Nikki at home and everyone else will take JJ down for his treatment to immediately be followed by another trip to the Zoo. Besides the fact that JJ enjoys the Zoo so much, there will be a celebration as Olivia turns three. Happy B-day Livie! Saturday looks like a day of placing the lights on the house and then Saturday evening, a trip to Constitution Village (Huntsville) for a visit to Santa's house/work shop. Last year was very nice and pleasant and expect better this year with their addition of a snow maker machine.
November 29, 2005
Single Digit Midget
Sorry for the delay in updates. Had some technical difficulties with the program. JJ is now a single digit midget . Only nine more treatments! He continues to do well and improve with his speech and balance. His left eye is still slightly turned in but is also showing improvement. This past weekend/holiday was well spent with family that had come up for the holidays. Friday was the zoo followed by Olivia's Birthday party. Saturday was spent with Grandma and Poppa while the rest went shopping followed by a visit to Santa's house at the Constitution Village. Yes, it snowed. Tomorrow is more treatment with his weekly visit to the lab and clinic.
November 30, 2005
Looking Good
Treatments, Lab and Clinic today. All went well. JJ is losing the water weight that he put on during his steroids binge. Down to 44.9lbs and the doctors continue to be pleased with his progress. His speech and lateral eye movement continues to improve and I believe that his eye is straightening out some (it is definitely better than when this all started). The radio-oncologists explained that he has three more days of regular radiation treatment and then for the last week they will narrow the beam (boost) and concentrate more on the center of the area of concern. This allows the radiation to focus more on the center of the tumor and not so much on the surrounding areas where it may have spread plus it keeps the radiation from affecting the healthy brain cells, limiting the side effects (yes there may be some but I think we can live with that). It is my take that they believe that the general area has been treated and the tumor is no longer present there so they (and God) are going to hit the heart of the beast for the remaining week. Fine by me. Let's destroy this thing so I can then start mentally preparing myself for how I'll address the "where have you been all night" issues when he gets into his teenage years.
December 2, 2005
The weekend is here
Down to six treatments remaining. All is still going well with his progress but Diana and I are getting a little concerned from JJs loss of appetite. He just isn't putting the food away like he should be. We have sent an e-mail to his doctor (who is not in today) and expect and answer back Monday morning. JJ's hair receded some more behind the ears (probably about 2 inches) and a small bald spot on the top of his head (next to his scar) so now Daddy has a nice military "high and tight" haircut. Haven't had one of these since basic training and yes, you can tell the difference in the air (much cooler outside). JJ then had his hair cut /trimmed and looks good. The only person that stands out now is old two-tone (me). Nothing but hair and will grow back when his does. This evening we will be attending an annual Christmas concert (Grissom High School Band) benefiting UABs Division of Pediatric Hematology and Oncology at Children's Hospital (here in Huntsville) and for this weekend is holiday shopping, rest and continued outpouring of love.
December 6, 2005
Need a Boost
Okay, regular treatment is now over. The next four treatments are boosts. They are basically going to narrow the beam more on the tumor and less on the healthy cells. JJ is showing great improvement across the board. His eyes appear to be very close to normal, speech has vastly improved, and yes, he is finding confidence in his new found voice (Absolutely love it). Balance is pretty much to center. Would I call him 100%? Probably not, but if you didn't know any better, I doubt anyone would detect a problem. He had a child psychologist evaluate him after his treatment today but the test was not completed. Should finish the evaluation as well as clinic and lab tomorrow. His is weighing in at 43.8 lbs and still does not have the appetite we would like to see. Doctor stated that loss of appetite is normal but to monitor and ensure that no symptoms come back. Oh you bet we will (do). Can't recall really taking our eyes off this child for any extended period of time except when sleeping since this all started. The weekend went quite well. The concert was fantastic (hats off to the Grissom High Band). Very well done and JJ thoroughly enjoyed it. We redid our Christmas pictures now that JJ has lost much of his fluid retention (from the steroids) and they came out great. Send an e-mail and I'll be happy to shoot some out to you. JJ and I went to Lowes last night and he picked out a very nice eight foot Frazier Fir Christmas tree which went up this afternoon. The house has a wonderful Christmas smell to it (have to love live trees).
December 8, 2005
Down to two
JJ continues to take the treatments and medications like a champ but I'm sure he's quite ready to be done with the driving to Birmingham five days a week. Especially since the sky doesn't even start to lighten from night until we are almost there. To his credit, he makes no complaints nor does he fuss when it's time to get up and go. He's down to two treatments. The boost treatments are a little longer and from more angles than the previous three weeks. He's on the table a little longer but I receive no complaints. Just his wonderful smile when the mask is removed followed by many kisses to the cheek. I so do want to be like him one day. You can't ask for a better model. I thought it was suppose to be the other way around but there is not a day that goes by that I do not learn/respect him more and more. He is my Son, He is my Hero.
December 12, 2005
and then there were none.......
After 5,592 miles of
commuting over a six week (30 trip) span, JJ has completed his
radiation treatment. He received nine different angles on
the last five boosts. Took it like a champ. When we lifted him
off the table, he was rewarded with his mask and a certificate from the
institute. Very nice with well wishes written from all those that
treated him through this trying time. Of course, the apprehension on
how much of the tumor is gone will now start since he has received the
maximum dose of radiation (5400 rads) that is possible. His next scheduled
visit to Children's Hospital is the 11th of January. He will then have
another MRI done to see where he stands as well as seeing a host of
doctors. His final weigh in was 42.3 lbs. He is off ALL
medications minus the bactrim (anti-pneumonia) which he will continue to
take on Friday, Saturday and Sunday only. Reading/judging from other cases similar to JJs, he will probably
start back up on the temodar (chemo) after the MRI in January at about 200 mg daily. He was
doing 60mg a day for the past six weeks. I know, a major increase but have no
problem with that as long as it keeps him around. I'm going to believe
that the temodar will not be needed as God has touched him and removed this
sickness from him. We're hoping to make the announcement of his miracle on
the 11th or 12th. Until then, please continue to pray for this
courageous young man.
The Magic Moments Foundation is convening on the 15th of this month to see
if they should sponsor a wish for him. His current wish is to go to
Disney. If they do, we have to get it in before T-Ball so we are looking at
taking off mid to late February for a week of spoiling. He also would like
to "go play in the snow and throw snowballs at daddy" plus "ride the
train". Diana and I are going to try and make this happen late January.
Working on the details for Amtrak from Memphis to Denver and staying at
Estes Park, CO for a week. Should be interesting but can't say I like the
thought of slush in my ears.
December 14, 2005
Slow News day
No medications. No treatments. No problems. What will we say? What can we say? JJ is doing great. Started back to school today (at his request). We kept him out yesterday due to the sniffles (something going around in the Lipski household) and were actually thinking of just giving him a chance at relaxing until after the Christmas break. I figured he had gone through enough the past two months to merit the break but when your five year old wants to go, you send him. He took his mask in for the class to see and when I picked him up, Miz Thomas commented on how well his speech has improved. Thank you for the confirmation ma'am. Nice to have the second opinion. We ask all to please continue to believe and pray until we have his miracle confirmed in January.
December 17, 2005
A gift within the miracle
I want to start the Diary today with a very special thanks to the Madison (Hwy 72) Branch of the Redstone Credit Union. The family was invited to the branch office at closing time on Friday. As the doors closed, the hearts opened as JJ (and Nikki) were showered with early Christmas presents from all within. Your compassion and thoughtfulness in the preparation for this event was evident and we are grateful. To all involved, my heart felt thank you. I can go on and on with the gratitude from the overwhelming support from MANY others but we'll leave that on the "Thanks" page.
We also received a phone call yesterday evening with some great, and somewhat surprising, news. Uncle Tom and Aunt Jacquie announced that JJ and Nikki will have another cousin due this coming summer. What a wonderful message and a true gift from God within the miracle.
Our train tickets have now been purchased. Snowmen, snow forts, snow ball fights are now on the agenda. Making this trip happen is of itself another story that I would like to touch on at a later date.
During this difficult time in our lives, I do take notice that this family is surrounded with love from family, friends and people we have never met. The love and prayers continue to grow daily and can only be the work of the Lord. Another gift during this blessed time of the year.
May you all have safe and blessed Christmas and Happy New Year.
December 27, 2005
Over the River and through the woods
What a full week. Christmas was celebrated in Millbrook, AL and Long Beach, MS. Mommy, JJ and Nikki got an early jump by leaving on the 21st, spending a couple of days with Grandma, Aunt Cheryl, Uncle Mike and cousins Rory, Kerry, Patrick and Caitlin. Daddy caught up after work on the 23rd where we celebrated an early Christmas dinner and an exchange of gifts. JJ and Nikki were showered with gifts and love which was enjoyed by all. On the 24th, we traveled to the Mississippi coast, where the remainder of the holidays were spent visiting Grandma and Poppa, Uncles Mike, Tom and Alan, Aunts Jill and Jacquie, and cousin Olivia. Again, it rained gifts and love. It will be much remembered.
Back on November 19th I made mention seeing multiple meteors and what I considered may be a sign from God telling us everything will be alright. When we were on the coast Christmas evening, Diana and I both felt a little troubled and needed to get away for awhile so drove down to the beach. No lights have been replaced from the hurricane yet which makes it nice and dark giving us a very nice view of the heavens. During the course of our conversation, we were still feeling a little low when we witnessed a meteor that lasted in excess of 5 seconds. It lifted us up and gave us some much needed renewed faith. Again, coincidence? Reaching? Not to us.
JJ's second opinion came back today from John Hopkins. The doctor there is in agreement with the original diagnosis and recommends continued treatment as currently prescribed. He did mention they "have a protocol but it is not proven at this time". I don't know what this entails but will correspond further with him on this. Will keep you posted as we learn more.
All Aboard! The train tickets came in the mail today. We were also notified today that JJ has been granted his wish for a trip to Disney. Haven't worked out exactly when we'll be going but anticipate it being before the start of T-ball.
January 2, 2006
Welcome 2006
We bid 2005 a not so fond adieu and welcome 2006 with much anticipation and hope. We forgot to mention that the last of his scab on his scar, as JJ would say, melted on Christmas day. He is doing quite well and is displaying no signs of slowing down. It has been an absolute joy to see the Lord working his miracle on him and ask that it continues.
New Years Eve went quite well with the "gathering" at the house. The best count we can give would be 20 adults and 22 children present. The fireworks lasted a little over an hour with both daddy and uncle Mike lighting up the sky from two separate spots. Nice show and I think an overall memorable one.
Next big event will be the 10th when JJ goes back for his next MRI. The results will not be immediately known as Dr. Reddy will be out of the hospital and the scan will have to be forwarded for her to read. Nothing would please me more than to have the doctors call and say they need another MRI since they can find nothing. Will let you know as soon as we know. Please continue to ask the Lord to work his miracle as that day draws near.
January 6, 2006
Faith
Miracles DO happen……… and will.
The credibility of miracles is established by the evidence of the senses on the part of those who are witnesses of them, and to all others by the testimony of such witnesses. The witnesses were competent, and their testimony is trustworthy. Unbelievers, following Hume, deny that any testimony can prove a miracle, because they say miracles are impossible. The Bible has shown that miracles are possible, and surely they can be borne witness to. Surely they are credible when we have abundant and trustworthy evidence of their occurrence. They are credible just as any facts of history well authenticated are credible. (Source: http://www.christiananswers.net/dictionary/miracle.html)
On January 10th, at 3:00 p.m. (CST), JJ will undergo his second MRI to see how the tumor reacted to the radiation/chemo treatments. Diana, Nikki and myself request that all those that pray for JJ, at this time, bow your head in prayer for his complete healing.
What a wondrous statement the Lord would make that, if during the time of the MRI, the tumor was seen in one photo and then gone in the next.
Luke 6:9~10 –
9 Then said Jesus unto them, I will ask you one thing; Is it lawful on the Sabbath days to do good, or to do evil? to save life, or to destroy it?
10 And looking round about upon them all, he said unto the man, Stretch forth thy hand. And he did so: and his hand was restored whole as the other.
Mark 11:23-24 –
23 For verily I say unto you, That whosoever shall say unto this mountain, Be thou removed and be thou cast into the sea; and shall not doubt in his heart, but shall believe that those things which he saith shall come to pass; he shall have whatsoever he saith.
24 Therefore I say unto you, What things so ever ye desire, when ye pray, believe that ye receive them, and ye shall have them.
Matthew 17:17~21 -
17 Then Jesus answered and said, O faithless and perverse generation, how long shall I be with you? how long shall I suffer you? bring him hither to me.
18 And Jesus rebuked the devil; and he departed out of him: and the child was cured from that very hour.
19 Then came the disciples to Jesus apart, and said, Why could not we cast him out?
20 And Jesus said unto them, Because of your unbelief: for verily I say unto you, If ye have faith as a grain of mustard seed, ye shall say unto this mountain, Remove hence to yonder place; and it shall remove; and nothing shall be impossible unto you.
21 Howbeit this kind goeth not out but by prayer and fasting.
Luke 5:24~25 –
24 But that ye may know that the Son of man hath power upon earth to forgive sins, (he said unto the sick of the palsy,) I say unto thee, Arise, and take up thy couch, and go into thine house.
25 And immediately he rose up before them, and took up that whereon he lay, and departed to his own house, glorifying God.
I would really like to announce to the world of His healing powers and graciousness but if the Lord would prefer that the miracle not be announced, all he has to do is let me know.
Luke: 5:13~14 -
13 And he put forth his hand, and touched him, saying, I will: be thou clean. And immediately the leprosy departed from him.
14 And he charged him to tell no man: but go, and shew thyself to the priest, and offer for thy cleansing, according as Moses commanded, for a testimony unto them.
Miracles DO happen............. and will.
January 9, 2006
Delayed
JJs MRI has been put on temporary hold. The stomach virus that has hit Northern Alabama did not bypass JJ (or the rest of the family for that matter). He has had problems keeping his food down and ran a low grade fever over the weekend. His system has to clean itself out and he has been rescheduled for the 17th of January at 1:00 p.m. I do ask that all continue to petition to God, through prayer, for the miracle he most desperately needs. Faith. Prayer is the key to God but it is Faith that turns the key to unlocking the door. With both, the door swings open to Him.
January 12, 2006
Report Card
JJ is half way through his first official school year. Second quarter report card came home with him today and wouldn't you know that even with him missing 31 days due to his treatment and an additional two days tardy due to appointments he still got Satisfactory marks across the board. We are VERY proud of him. All we ever asked him to do was "try your best" and he does just that. Of course it helps having a great school with a fine faculty to assist. Our many thanks to Creekside Elementary School and the staff for all their support. He loves going to school and learning.
Faith. "for your father knoweth what things ye have need of, before ye ask him (Matt 6:8). Pray the answer, never the problem. God already knows the problem. If you pray the problem, it will get worse. If you pray the problem, you loose the ability of the enemy (satan). Pray the problem, and it will grow greater and your faith will flee away on the wings of doubt (Charles Capps). Pray the answer, rest in the Lord and wait patiently for Him. Faith.
January 16, 2006
A "Croppin" Good Time
Saturday was the "Crop for a Miracle". For those of you not familiar with the term - it is the chance for people with boxes full of pictures to sit at a table, away from grimy little hands, and concentrate on putting memories on a page. There were probably about 50 folks sharing ideas and good conversation at the Sheraton Four Points in Huntsville where they had the chance to win door and raffle prizes (all of which were generously donated). Many thanks to all of those involved in organizing, preparing and running the event. A thank you, also, to those who came to support JJ.
Tomorrow is JJ's rescheduled MRI. We again covet your prayers for some wondrous results. Jesus says in Mark 5:36 "Be not afraid, only believe". "For I know the plans I have for you, " says the Lord. "They are plans for good and not for disaster, to give you a future and a hope." Jeremiah 29:11. Amen.
January 17, 2006
MRI Results
Let me start by saying that once again, JJ has shown me how to do it right and with no complaint. There was a mix up between clinic 8 and the MRI people. When we first arrived, JJ got needle stuck in preparation for his "Magic Milk". When we made it up to the MRI folks, they reviewed his file and stated that he would need a "general". The nurse went on to say that the people that do the general were not present and JJ would either have to do it awake or we would need to reschedule. We talked briefly with him, telling him that he would have to be very still for 30 minutes. He response was that he "wanted to try it awake". I was able to stay with him and wouldn't you know that this 5 1/2 year old child did it. Completely immobile for 30 minutes! I'm not sure I could do that and he did it standing on his head. Like I said, I was able to stay with him but other than holding his leg to let him know I was there, not much I could do. Lots of noise and we had to wear ear plugs so I seriously doubt he heard any of my words of encouragement. Talk about being a proud parent.
Okay, on to the results. We went back to clinic 8 where we saw Dr. Reddy. Her words, "JJ reacted extremely well to the treatment and there is a noticeable amount of shrinkage of the tumor". The contrast pictures were not available so she couldn't tell us the extent of what remains but some does. JJ will start back on his Temodar at 140 mg a day for 5 days in a 28 day cycle. Other than that, he'll be seen again by Dr. Reddy in a month.
We ask that all please continue to pray for JJ while the Lord completes his work.
January 29, 2006
Bells and whistles
What a nice relaxing past week. JJ was treated to a two day train trip out to Colorado, stayed five days playing in the snow and general relaxation then an additional two days back. The train was nice and, as stated, relaxing. If anyone just wants to take some time off and enjoy the country, it's a pretty good way to go. We do recommend first class/sleeping which gives you privacy and meals (which appear steep on the menu and are part of the ticket). Coach would have been difficult with the little ones. Additionally, while waiting in Chicago, there is a very nice club in the terminal where you can get away from the rigors of traveling. Colorado had snow a couple of days prior to our arrival but the making of snowmen and snow forts could not happen as the outer layer had frozen over. Just the same, snowballs rained down and snow angels materialized. JJ is quite the cameraman, taking an action photo of Daddy getting hit by a snowball in the back of the head thrown by Mommy. Mommy swore up and down that the ball hit between the shoulder blades. Diana will be doing an additional rosary for that little fib since pictures do not lie. The trip was a nice get away and enjoyed by all.
JJ did show some signs of fatigue while on the trip as well as a loss in his appetite. We're hoping it was just the thin air for the fatigue. His loss of the appetite is something of a concern and are watching closely since it has never really returned. He told us that his belly hurt when he eats so we contacted Children's Hospital and they stated that it is possible that he has developed a medicine induced ulcer. JJ is now back on Zantac (over the counter). It appears to be working since the last couple of days has shown him putting more food down. We have also observed a couple of times that his left eye is wanting to turn back in. This does not seem to be a permanent thing since it straightens itself back out but, of course, is a concern. Please continue to pray for this brave little man and that God comes in haste of his healing. On the upside, JJ is really looking forward to this years T-Ball season and will start his spring training with Daddy mid February. All are invited to attend the games.
February 1, 2006
Food good, yum.
Just wanted to give a quick update that our prayers continue to be answered. JJ's appetite has greatly increased over the last couple of days. Almost to the point that we don't recognize him. Shoveling it down like when he was on the steroids. His energy level is up and we absolutely love it. We thank and praise God for the answered prayers.
We also wanted to drop a couple of links on the "Give Kids The World". This is where we will be staying when we make the trip to Disney. Our experience with this organization to date has been nothing short of wonderful. Please check them out.
http://www.gktw.org/pre/index.asp?stay=village
We fully anticipate complete and utter spoiling of both children.
February 11, 2006
Magical
Just got back in from the Magic. What a wonderful place to stay and visit. "Give Kids The World Village" (where we stayed) is an absolute priceless pearl. EVERYTHING they do is structured around the child. From the time you drive through the gates, all you get is smiles and pampering. You can't so much as carry your tray of food to a table. If a wish child requests something, it gets done (if at all possible), period. Most of the folks that work there are volunteers with the ages ranging from the elderly to a little girl that I would guess to be about eight. Yes, an eight year old was giving her time on a Friday night serving dinner. Our many thanks to all that work/contribute their time to make it such a wonderful place. As Diana put it this morning, "usually you start to look forward to going home from a vacation, but I'm not getting that feeling after being here". This place will definitely be placed on the list for our yearly donations. Truly a small piece of heaven placed on this earth.
GKTW supplied us with three days worth of tickets to Disney, two days to Universal Studios and one day for Sea World. We would also like to thank ALL of the parks for a wonderful experience. EVERYONE of them, bent over backwards to make JJ’s trip as enjoyable as possible. When an employee noticed JJ’s GKTW badge, we were moved to the front of every line. Every one of them, every time. Diana and I believe that the total wait time for the entire week standing in line amounted to less than an hour. That’s TOTAL TIME for the week! If you have been to Orlando, you know that you may wait an hour or more for just one ride. The cast of characters (autographing) took the extra time with him every time as well and there were actually four characters that stayed an extra five minutes into their break to entertain him. Diana kept a running log of the rides and shows we hit. Will try to get them out at a later date.
To sum up the vacation. Totally enjoyable and utterly exhausting. I take note that one evening as we were heading back to the village we stopped at a Super Walmart to pick up some stuff. I looked into the back seat and JJ was slumped over sideways totally asleep. When I mean sideways, I mean, over the arm of his booster with his head on the seat. Looked over at Nikki, and she was basically the same as her brother.
JJ appears to be doing well. Speech is still soft but clear. Appetite is okay but we still have to remind him to eat. His next appointment is a checkup/labs on the 14th with Dr. Reddy. Please continue the prayers. Will let everyone know the latest as we get it.
February 16, 2006
Well Pleased
I was able to compare his before and after MRI images. While they did not show quite what I had thought they would, it was very obvious the effect that prayers and treatments have been having. There was a decrease in the size of the Pons (where the tumor started growing) which means that the tumor itself is shrinking; the color of that area was less black (which indicates an issue) and was much more the color of the rest of his "gray matter". The ventricles and other affected areas were almost returned to their normal sizes. The before picture showed where the swelling had caused part of his brain to press against a portion of bone, this is no longer the case.
His weight is still down, so we have in our back pocket an appetite stimulant which, if we decide to use it, will hopefully convince him that a greater variety of food than Froot Loops with milk and Cheetos is ok.
As always, we thank you for continuing to thank God for JJ's complete healing.
Psalm 100:4 Enter into His gates with thanksgiving, and into His courts with praise; be thankful unto Him and bless His name.
February 22, 2006
Doing fine
Took a look at the site and realized that we haven't updated in almost a week. Due to JJs appetite refusing to get to the level we would like to see, we started him up on a very low grade type of medication (Megestrol, 1 pill twice daily) which is suppose to help him find the flavor of food again. Judging the results over the last week, I would say it is working very nicely. He is eating more but not overeating. JJ also just completed his monthly Chemo (Temodar). In addition, he is taking Zantac (acid reducer, 1 pill twice daily), Zofran (helps keep his stomach settled, 1 pill twice daily), and his bactrim (anti-pneumonia, 1 pill twice daily on Friday, Saturday and Sunday only). With the completion of JJs radiation treatment and the Temodar basically doing nothing more than slowing the regrowth, Diana and I have made the decision to start JJ on some all natural supplements of Ruta Grav 6C and Calc Phos 3X. These supplements (very small pills) have not been scientifically proven but we have heard that they may assist him in his condition so ......... JJ takes the Ruta in the morning and at dinner (2 pills per) and the Calc Phos when he gets home from school and right before bed (2 pills per). We will also be starting JJ on a vitamin supplement of Protocel 50, Pro Enzymes, ProGe-132, VitaPro and CM4 (2 month supply arrives tomorrow). Again, there is no scientific proof that the vitamins will help but have heard that it may do wonders for his condition. I suppose we should know if they are doing anything when his next MRI is taken which we believe is in April. It pains me to see my little 5 year old having to take so many pills but we will do whatever it takes to keep our favorite little man around. To me, to do anything less would be a criminal act on my part.
JJ is doing quite well. His energy level is still very good and is not showing symptoms of the tumor minus an occasional left eye turning in for brief periods. The T-ball draft for the upcoming season is this Friday night and we should be notified Saturday on what team he will suit up for. He is very much looking forward to the upcoming season and all are invited to attend his games.
Psalm 27:14 - Wait on the Lord; be of good courage, and he shall strengthen thine heart; wait, I say, on the Lord.
February 26, 2006
Drafted
Just wanted to let everyone know that it is official. JJ was drafted and will be playing for the Athens A's T-Ball team again this year. He very much wanted this and we thank all those that have helped make this small wish of his come true. JJ practiced hitting for 10 or so minutes in the backyard on Friday and was knocking it pretty good. Definitely getting it to at least the infield dirt and a couple I would venture to say would have made the outfield grass. Still hitting from the left side yet throwing right. Oh, how I'll try and sculpture this as he grows. Oops, that was a daddy thought, wasn't it? Should be an exciting season and, again, all are invited to attend the games. I'll get the schedule posted as soon as we get it.
JJ is doing very well and is showing very little to no signs of slowing down. We received his vitamin supplements but are going to hold off giving them to him until Diana meets with a Nutritionist on the 7th. A couple of these capsules are large and, as Diana put it, could make a horse gag. We're hoping the specialist states that we can bust open the capsules and place the powder in juice without losing any of the effects. Will let everyone know how things turn out as the events progress.
March 1, 2006
Practice
Last night was JJs first practice with his new teammates. For the most part, all went quite well and you could tell he was having a great time being on the field but he did wear down about 45 minutes into the hour practice. JJ hasn’t handled the cold well (mid 50s) since being diagnosed and I think it was more that than tired. JJ appears to have lost a step on his speed and you can tell from his lateral movements that he is not where he should be. Just the same, he very much enjoys the game and we'll continue to support him. While on the way home, he did say that he wanted to practice in the backyard tomorrow.
When bed time rolled around, JJ commented “Daddy, I need you to help me say my prayers”. Okay, I do that nightly anyway and it has kind of become a boy thing. So his mother left and I knelt beside him as he lay in bed. The first thing he told me was “I don’t want to die”. He repeated this an additional two times and “I hope God doesn’t take me back to heaven yet” before I could recover and inform him that none of us that believe in Jesus die and went on to explain that when our life is over here on earth, we go back to heaven to be with God, Jesus and all our friends and relatives. That there is no hunger, sickness or sadness. Thinking that maybe I had missed the conversation he and his mother had just had in his room, I then asked where this came from? He simply pointed to the side of his head (as in he was thinking it) and said something about a cutting knife not being sharp and that it fell to the floor. I tried to get more out of him but the little man just couldn’t put the image to words. We then started on his prayers (we say a series of them). About half way through, he stopped me and stated “Daddy, God and Jesus have big hands”. Well, this also being out of the blue, got my attention. He went on to say that “God and Jesus have big hands so that they can pick us all up into heaven”. Naturally, I could only agree with him. We completed our prayers and he drifted off into sleep. The first thing I asked Diana when I came out of his room was “what did you two talk about”? Her reply was about tucking in “buddy” (his little small stuffed friend that has been with him his entire life and through the complete ordeal to include every radiation treatment) and small talk. When I told her about the conversation JJ and I just had, she was as floored as I was. I, and Diana, can never recall using this kind of verbiage with JJ when talking about the Lord. The only thing we can believe is that the Holy Spirit has directly entered and spoken to JJ. We’ll try to get more from JJ over time and pass it on but I wanted to share the story with you and welcome any thoughts.
March 6, 2006
Plugging along
JJ continues to be a champion. Since the last post, he has shown improvement in his voice (louder and clearer) and appetite (intake greatly improved). I also think that he has shown some improvement with his balance but am not positive on that yet. Over the course of the last year (since he started displaying a softer voice), Diana and I have grown accustomed to asking JJ "what's that buddy, I didn't hear you". On at least two occasions since the 1st, this has happened and JJs response in a nonchalant way was "I was talking to God/Jesus" (one each). Our little five year old is not only praying to God and Jesus but is actually talking to them. You take this for what you will but tie it in with the first couple of sentences of this post and you'll get our gist of this. We have since then, added a prayer to his list that goes, "God I have faith in you and believe that you will heal me". Very short but to the point and one that I believe is being heard above all others (Mark 11:24, Therefore I say unto you, what things soever ye desire, when ye pray, believe that ye shall receive them, and ye shall have them). This has very much strengthened my faith and belief. I ask that you continue to pray and believe in JJs healing. He definitely has a much greater relationship with the Lord since this all started.
Oh, by the way, his hair is starting to come back in pretty nicely on the sides and top of his head as well.
March 13, 2006
Has it been five months?
It is so hard to believe that it has only been five months since JJ's diagnosis. To me it feels like we've been on this roller coaster for years. Lots of ups, downs, curves, loops and drops. With all that said, I can honestly tell you that JJ is doing quite well. We have not seen any symptoms the past couple of weeks. His energy level is still high as well as is his appetite. We treated JJ and Nikki to the Birmingham Zoo this past Saturday where a very good time was had. JJ enjoys the zoo so much that we purchased an annual pass which, I am quite sure, will pay for itself in no time. T-ball is getting into full swing with practice twice weekly and opening day scheduled for Saturday April 8th. JJ continues to bring home excellent work from school even though he is missing a fair amount of time due to his trips to the doctor and minor colds/coughs. When we praise him for his good grades, he simply states that "all you ask me to do is my very best". My boy. Yes, that's pride talking.
We consulted with a nutritionist who has provided some additional options. We are exploring but have not made a decision on anything to date. He is also now taking vitamins in addition to his normal intake of medicines and supplements. To give you a feel of what he does daily, I'll outline his schedule.
4:00 a.m. - 1/4 tsp of Protocel 23 mixed with 3 ounces of grape juice or distilled water. (JJ favors the juice as it hides the taste better).
6:00 a.m. - 1 capsule ProGe 132 & 1 capsule ProEnzymes mixed with applesauce. We open the capsules and pour the contents into the sauce. (Taste is not the best, but is easier than trying to swallow those horse pills).
6:30 a.m. - 3 capsules of VitaPro mixed with applesauce. 2 pills Ruta 6C, 1 pill Zantec, 1 pill Megestrol, 1 pill Bactrim (Fri/Sat/Sun only).
7:00 a.m. - 1/4 tsp of Protocel 23 and 1 ml CM4 mixed with 3 ounces of grape juice or distilled water.
10:00 a.m. - 1/4 tsp of Protocel 23 mixed with 3 ounces of grape juice or distilled water. 1 capsule ProEnzymes mixed with applesauce.
1:00 p.m. - 1/4 tsp of Protocel 23 and 3/4 ml CM4 mixed with 3 ounces of grape juice or distilled water.
3:00 p.m. - 2 pills CalPhos 3X, 1 pill Zantec, 1 pill Megestrol, 1 pill Bactrim (Fri/Sat/Sun only).
4:30 p.m. - 1/4 tsp of Protocel 23 mixed with 3 ounces of grape juice or distilled water & 1 capsule ProEnzymes mixed with applesauce.
5:00 p.m. - 2 capsules VitaPro mixed with 3 ounces of applesauce and 2 pills Ruta 6C.
8:00 p.m. - 1 pill Zofran (Chemo week only).
8:30 p.m. - 1/2 tsp of Protocel23 mixed with 3 ounces of grape juice. 2 pills CalPhos 3X. 140 mg (3 pills) Temodar (Chemo week only).
This is daily folks. To JJ's credit, he has taken all this in stride and has, at the times he wants to go to bed early, reminded us to get his medicine for him. Whenever I feel like times are getting tough, I just have to reflect on what this brave little MAN has to go through............. He has taught me so much and I am grateful.
As his daily schedule shows: I can do all things through Christ which strengtheneth me. Philippians 4:13.
March 15, 2006
Check up
Just a quick note to let all know of JJ's monthly check up from today. Lab work of two vials of blood went off without a hitch or a whimper. Nice and brave. Our little man is 43 1/2 inches tall and weighs in at 40.2 lbs. I am very satisfied with his weight since he was down to about 34lbs before we put him on the Megestrol (about a month ago). With his weight gain also comes a higher dose of Temodar. Up to 150mg (from 140mg) a night starting tonight for the next 5 days. Dr. Reddy is very satisfied with his condition and the phrase she used was "he looks fabulous". Next check up will be on the 11th of April at 2:00 p.m. followed by another MRI at 2:30 p.m. Please keep him in your prayers and especially at 2:30 when we expect the Lord's works to be confirmed by science.
Be careful for nothing; but in every thing by prayer and supplication with thanksgiving let your requests be made known unto God. And the peace of God, which passeth all understanding, shall keep your hearts and minds through Christ Jesus. Philippians 4:6, 7
March 22, 2006
Comfort
Diana, JJ and Nikki have gotten the spring break urge to get out. It was decided this afternoon to head for Montgomery and Long Beach to visit grandparents, cousins, aunts and uncles leaving poor old me to stay behind in this nice quiet house. I would say ahhhhh but have grown accustomed to the noise of two children and tripping over toys. I miss them already but know that it is much needed for them to get out to family. T-ball practice has been canceled twice since the last update due to weather. Not to worry, JJ took his batting T and equipment with him to show off.
JJ continues to amaze us with his maturity. You've seen the schedule he keeps yet he does not complain in the least. Sometimes it's a little difficult to wake him up at 4:00 a.m. for his Protocel but once he comes around, he sits right up and drinks it down. We discontinued the VitaPro. Diana did a little extra reading and found that it served no purpose and possibly even got in the way of the other supplements from doing what they are designed to do. He does not appear to be displaying any of the symptoms that we know of but there is something about him that is different. I just can't figure out what it is. Is this a bad thing? I just don't know but it has troubled me some. Which leads me to an experience that I had today that I would like to share with you.......
This emotional rollercoaster has been taking it's toll on me so I made a visit to the Shrine of The Most Blessed Sacrament today. (http://www.olamshrine.com/olam/welcome.htm / http://www.catholicherald.com/articles/00articles/pilgrim2.htm)
It is a very beautiful place and the chapel is very impressive. It is also a very good place for prayer and meditation as silence is strictly observed. You know, one of those silences where you can hear yourself breathing? As I was meditating, I poured out my troubles and concerns. I felt very low and in, what many would describe as, despair. As I let the Lord know what I thought would happen to JJ if he did not intervene............. I'm not kidding about the next part, suddenly, and I mean faster than the blink of an eye, I felt nothing. All my despair disappeared, I could no longer hear my breathing but yet could hear footsteps of others on the floor or the door lightly closing, I could not feel my feet or hands yet felt feather light throughout my body. I could not open my eyes although I will admit I didn't want to. I know without a doubt that the Lord had at that very moment, picked me up and comforted me. As he held me, I kept right on talking to God although I could not bring forth any thoughts of pain. So I did what I should have been doing all along, I thanked Him. I don't know how long this lasted but when I was finally able to open my eyes, I felt 100% better and at peace. I do not know if God has answered my prayers for JJ but I do know that he has answered my prayers for strength and renewed faith. If this feeling I had is a taste of heaven I can't wait to get there.............because thou, LORD, hast holpen me, and comforted me. PSALM 86:17.
March 29, 2006
Spring Break
I'll start the post by letting everyone know that the 3rd quarter report card has come in. Of course, you guessed it, straight Satisfactory across the board. JJ enjoys school and continues to go full time. Don't ask me how, it wears me out just watching him. It is a true joy to watch him learn. His reading is coming along very nicely, math and all other studies are excellent as well. About the only thing he is a little apprehensive about would be PE. He got knocked down once before diagnosis and I think his motor skills were a problem so he is hesitant about getting out there with all the other kids. We're slowly coaxing him back into it but will not push.
As you know, the Wednesday of spring break, the kids and I packed up and went south. The first night was to Grandma Alabama's house. There was a guest speaker at church and he prayed over JJ. Then Friday in Long Beach, the priests and students of St. Thomas & St. Paul Catholic schools recognized JJ during the Mass. Father Louis also anointed JJ with oil. (Many thanks to him for offering this, as it had been on my mind - Is any sick among you? let him call for the elders of the church; and let them pray over him, anointing him with oil in the name of the Lord: James 5:14).
While on the Mississippi coast, we were able to spend some quiet (and not so quiet) time with the family there. We were able to go out for lunch and even to Chuck E. Cheese. (I'm never sure who enjoys that excursion more - the kids or the adults.) Everywhere you look down there the view has changed because of Katrina: there is more light in Grandma & Poppa's backyard (a lot of the pine trees came down) & you can see all the way to the beach from the railroad tracks (most of the houses came down). There seems to be more progress made since Christmas - a great deal of the debris has been removed; there are still piles of branches, but it is better.
Our daily schedule continues to include multiple trips to the school for supplements. We have done our best to fit into his academic routine and try not to intrude on class time, but rather get to JJ during activity changes. All at Creekside have been wonderful as we drop in.
It's hard to believe that in only 2 months JJ's Kindergarten year will be over. We couldn't be more proud of the way he has handled everything that's been thrown at him during his first year at the "big school".
T-ball opening day is April 8th. http://www.athensdyb.com/56a-s.html is the link to his team's schedule. You're more than welcome to come and support all of the kids in this fantastic league.
March 30, 2006
A Hitch in Our Stride
We woke up this morning and started checking the usual websites, you know, the other kids who are fighting, and found out that one little boy's fight is over and learned of another young girl this evening. It really threw us.
We know what the textbooks say, we know what the statistics say, but it got personal again. Neither Ben nor Ashley are statistics. They are children who have loving families and friends.
We know that JJ is doing well but we are always checking for symptoms, we are always wondering if something doesn't seem quite right, we are always afraid he'll be a statistic. But statistics work both ways and textbooks have examples of things that go against the "norm" and JJ is OUR child and we are his family and we love him and are very proud of him.
So please, continue your prayers for JJ and the others who are fighting this as well as the families of those whose battles are over.
Finally, my brethren, be strong in the Lord, and in the power of his might. Ephesians 6:10
April 4, 2006
No news is good news
Sorry for the delay in the update but as I said above, no news is good news. JJ is doing very well and we can say that he is showing no symptoms of his condition that we can identify. Going to school full time and T-ball practice doesn't seem to slow him down in the least and has a high energy level. About the only change to JJs routine is that we have bumped him up to the Protocel 50 (from the 23). It was recommended that he start on the 23 (to get his system used to it) and the only reason for the move to the 50 was we both felt he was on the 23 long enough for his body to get accustomed. There is an added bonus to the 50. He only needs to have that every six hours (instead of every four for the 23) so there is one less time during the night that he has to wake up. His appetite is still very good so we decided to drop his Megestrol down to half a pill twice a day.
The weekend was spent together and fun. JJ and I constructed a large tent from sheets in the middle of the living room Friday night and "camped out". Don't ask about the back. Saturday was a matinee at the movies with a viewing of "Ice Age 2". Not a bad movie but JJ was not overly happy with the alligators. Probably not on our "to buy" list. Family time the remainder of the weekend.
April 5, 2006
Please keep them in your prayers
God has received two more of his children early this week. Trent and Jayden both returned to the Father after fighting their own battles with pontine glioma. We ask that your prayers include the families of these two warriors.
Find rest, O my soul, in God alone; my hope comes from Him. He alone is my rock and my salvation; He is my fortress, I will not be shaken. Psalm 62:5-6
April 8, 2006
Play Ball
Well, after a full night of super cell thunderstorms, tornado warning notifications jumping up about every 20 minutes and several inches of rain. Saturday brought cloudy skies with temperatures in the mid 50s and a strong Northern wind. It was cold, there was a two hour delay but play ball they did. JJ had two at bats going one (single) for two (fielders choice) in a losing effort as the As went down 9-8 to the Reds. I just absolutely love T-ball. I don't think any of the kids knew who won or lost, and if they did know, didn't seem to care. They go out on the field, have a good time and enjoy. Somewhere in there, they learn.
JJ looks and sounds good. His energy level seems to be fine but I do note that he has gone to bed early last night and tonight. I'm going to attribute the early bedtime to just being worn out. Pa is in for a visit and they are competing on who can wear out who plus the game today (it really was a very cold wind). He is scheduled for his monthly check up on the 11th at 2:00 p.m. followed immediately by his bi-monthly MRI at 2:30 p.m. We ask for additional prayers for JJ during that time.
Ye also helping together by prayer for us, that for the gift bestowed upon us by the means of many persons thanks may be given by many on our behalf. 2 Corinthians 1:11
April 11, 2006
Longggggg Day
Okay, all, it's been a long day so let me get to the results first. The tumor has not grown over the last two months. It has not diminished either but not growing is a good thing for now, the official word is "stable", thank God. We did have some concern on Palm Sunday as his left eye had turned in for pretty much the whole day. Monday was not near as bad but had some minor turn from time to time. Today I did not notice any deviation at all. I'll try and not figure it out. Just thankful that it has returned to normal.
Like I said, it's been a long day. JJ's first appointment was only a half hour late. 2:30 p.m. instead of 2:00 p.m.. Not bad considering past appointments. Problems came up shortly thereafter when he needed a hep-lock inserted so contrast could be added for the MRI. IV therapy (technicians) were paged multiple times and it took them in excess of an hour to get down to see him. By then, we were well past his scheduled appointment time for the MRI. I'll make it short. He did not get seen for his pictures until 5:00 p.m., results reading back at clinic 8 at 6:10 p.m. and not back home until 8:00 p.m. The entire time, he took it like a champ but was hungry and asked several times when we were going to be able to leave. He continues to make us proud just the same by not fussing, just questions. I was about to type that he stayed awake for the entire MRI but will rephrase, he was not sedated. I was able to be with him in the room again and can tell you, he was fast asleep 5 minutes after going into the tunnel and stayed that way throughout. I wish I could take this as well as he but again, he has taught me more throughout this trying time more than I have taught him. Thank you buddy and thank you for your prayers for JJ and all the other children afflicted. We believe they do make a difference and ask that they continue.
1 Peter 2:9 But ye are a chosen generation, a royal priesthood, an holy nation, a peculiar people; that ye should shew forth the praises of him who hath called you out of darkness into his marvellous light:
April 15, 2006
A little concerned
Diana and I continue to ride the emotional rollercoaster. I know it's only been four days since JJs MRI showed being stable but his left eye continues to be a concern. It has been turning in from time to time but has not remained a constant (which we are grateful). Just the same, it is a symptom. I can't help but think back to late last May when we first noticed his eye turning in. At that time, it was reacting pretty much the same way as it is now, just every now and then. I also remember that within a month, it had become a pretty much permanent thing and he was in glasses. Only this time, we know what the cause is. As far as we can tell, other than the eye, JJ is doing well and showing no other symptoms. We continue to explore the web and look at options. One thing we are considering is a Hawaiian juice called Noni ( http://www.nothingbutnoni.com/cancer.htm). Not sure if it will work but sure beats doing nothing. I forgot to mention in the last post that JJ weighed in at 41.16lbs and now stands at 43.25 inches. Since his appetite level is still good, we have weaned him off of the Megestrol. JJ has also been accepted by NIH for a study on the PET scan (http://www.radiologyinfo.org/content/petomography.htm) and will be traveling to Bethesda MD in June for a week. If I understand this correctly, he will undergo an MRI in the middle of the week followed by the PET two days later. NIH will be putting us up at no cost. Our only cost is getting there and food. We'll drive up and make a small vacation out of it, seeing Uncle Mike and Aunt Jill, catching an Oriole (and maybe a Nats) game, playing the tourists of DC again and visiting some old friends. We definitely wanted to do this anyway, I just wish it was under different circumstances.
JJ continues to take school in stride and seems to find the work quite easy. Must get that from his mother........ His second game of T-ball was yesterday evening. The A's fell to the Braves, 19-7 and are 0-2 on the season. You couldn't tell that from the way the kids react and that pleases me to see. At their age, fun and learning is more important than winning. JJ had two at bats, reaching both times. First AB was a fielders choice and the second was a clean hit which he advanced all the way to 3rd. Now, anyone that has witnessed a t-ball game knows there is really no such thing as a true triple but I'll credit him with the three bagger anyway. So, for the season, he has an on base percentage of 1.000 and an average of .500. He also made a play with a clean field on a ground ball keeping the runner from advancing to second. He very much enjoys the game.
Please continue to pray for JJ and all other children afflicted.
Jeremiah 29:12 Then shall ye call upon me, and ye shall go and pray unto me, and I will hearken unto you.
April 19, 2006
Six Months
Today marks six months since JJ's diagnosis. On Monday, he had an appointment with Doctor Jahraus (Radiation Doc) where he was given a "he looks great". We did ask several questions but the one I think everyone would like to know about is his eye. Of course, JJ's eye was nice and straight for the exam and he gave us a puzzled look. We went on to explain the turning in from time to time. He gave us a pretty good answer. Dr. Jahraus stated that the optic nerve has some fat along the nerves and he believes that the radiation might have slightly affected the fat and therefore is not "communicating as well" . It should be a temporary thing and correct itself. We were cautioned though with a "no guarantee" and if we see that the eye maintains a turned in position, to notify the hospital and they can schedule another MRI "rather quickly". Doctor Jahraus also commented that if we really, really, really wanted to be positive, we could say that the tumor may have shrunk some since the January MRI but he further stated that it is such a minimal difference that he would much rather say, "stable" and supplied us with a October vs April photo MRI comparision. No promises, but we'll try to scan both and post.
Now, onto the stuff you all really want to know about! The A's played both Monday and Tuesday evening. Um.... let's just say they still have a perfect record and leave it at that. JJ did get four at bats over the course of both games and reached safely all four times with singles. Also credit the big guy with two RBIs last night. If my math is correct, that makes him 6 for 8 or batting .750 and a 1.000 on base percentage. I really could use him and those numbers on a couple of my fantasy teams right now.
One last thing. JJ was requested by the Brain Tumor Foundation For Children (http://www.btfcgainc.org/index.asp) to represent Alabama for the upcoming fund raising golf tournament that they and the J. Smith Lanier company host every year and is scheduled for the first week of May. In a nut shell, they are going to take his picture (tomorrow down at Children's) and then place it in the program for the participants. If we get (and we better) any photos, we'll try to post but check the referenced site as it might also make that as well.
"I am the vine, ye are the branches; He that abideth in me, and I in him, the same bringeth forth much fruit: for without me ye can do nothing." John 15:5
