the 2nd year

Very brief post. JJ woke this morning about 4:30 a.m. with no new symptoms to speak of. By 6:30 a.m., he was having an extremely difficult time breathing and could no longer support himself sitting or manage to speak. Naturally, he had an ambulance ride to Huntsville Women's and Children's Hospital ER. They did manage to ease his difficulty with the breathing part but not completely. Consultation with Doctor Reddy at Children's Hospital merited a Helicopter ride to Birmingham. JJ is even pre-admitted - 4th Tower, Room 441. All further updates on his condition will probably have to be through the carepages.

Prayers for all the children and special intentions to Kate Hrischuk and her family.

Over the last 15+ months, we have become so focused on JJ's (and the other kids) fight for survival through clinical studies, alternative treatments, etc, that I realized I haven't gone back and reminded myself just what exactly this monster is that has attacked him. Naturally I hit many medical sites and all the descriptions of a DIPG that I have already seen and sadly, most of the these sites have not even been updated. 15+ months and absolutely nothing new. Just the same, I'd needed the reminder and, for those that may not know, would like to share what the brain stem is and how it basically works.

The brain stem connects the brain with the spinal cord. All the messages that are transmitted between the brain and spinal cord pass through the medulla—a part of the brain stem—via fibers. The fibers on the right side of the medulla cross to the left and those on the left cross to the right. As a result, each side of the brain controls the opposite side of the body. The medulla also controls the heartbeat, the rate of breathing, and the diameter of the blood vessels and helps to coordinate swallowing, vomiting, hiccupping, coughing, and sneezing. Another component of the brain stem is the pons (meaning bridge). It conducts messages between the spinal cord and the rest of the brain, and between the different parts of the brain. Conveying impulses between the cerebral cortex, the pons, and the spinal cord is a section of the brain stem known as the midbrain, which also contains visual and audio reflex centers involving the movement of the eyeballs and head.

Twelve pairs of cranial nerves originate in the underside of the brain, mostly from the brain stem. They leave the skull through openings and extend as peripheral nerves to their destinations. Among these cranial nerves are the olfactory nerves that bring messages about smell and the optic nerves that conduct visual information.

Now, me being one of the lower wattage bulbs in the room, I needed and found a description on kidshealth.org that made it easier for me to digest.

The brain stem sits beneath the cerebrum and in front of the cerebellum. It connects the rest of the brain to the spinal cord, which runs down your neck and back. The brain stem is in charge of all the functions your body needs to stay alive, like breathing air, digesting food, and circulating blood.

Part of the brain stem's job is to control your involuntary muscles - the ones that work automatically, without you even thinking about it. There are involuntary muscles in the heart and stomach, and it's the brain stem that tells your heart to pump more blood when you're biking or your stomach to start digesting your lunch. The brain stem also sorts through the millions of messages that the brain and the rest of the body send back and forth.

Okay, so the brain stem acts as the bridge between the rest of the brain and the body. Without the bridge, the body shuts down.

I'm not sure why I needed this reminder, I've known the answer for 15 months. I suppose it's because when I look at JJ sitting and see a perfectly healthy kid (muscle tone, intelligence, etc) but then see him when he moves and notice that even with no trauma of any kind, I see him dragging his right leg, I notice his right arm just hanging limp with very, very little strength in it, I notice that his speech is soft and nearly incomprehensible, that it would appear he is starting to have a little difficulty swallowing, that when he looks at me I have to bounce back and forth from one eye to another to keep eye contact, that I have noticed (during his last exam) that he no longer has lateral eye movement to either side, that he has has difficulty maintaining his balance (even when sitting). You have to wonder how? So okay, I guess I do know why. I needed the reminder on what exactly is going on.

You know what the really hard part is? His intelligence is not affected. He's just as smart today as he was before this all started. You have to think that there has to be at least a little analyzing on what is going on inside him? To his credit, he says nothing nor does he complain. Even though it continues to be more and more difficult physically, he continues to want to do the same stuff as he did before the onset of symptoms. So, I'll continue to throw on the happy face and support him the best I can.

Speaking of support, I want to thank all those in my agency that have donated leave to me. The response is nothing short of overwhelming. You all have given me, the family and most importantly, JJ a chance to share one another to the utmost and I am forever grateful.

Please keep all the other kids in your prayers. Stand next to these children in prayer and believe.

Isaiah 7:9 If you do not stand firm in your faith, then you will not stand at all.

Today was Matthew's actually due date. As you can judge by the post time, he is keeping one (or both) of us up during the wee hours but hold no regrets for asking for the early inducement. The early arrival was best for Diana and the baby and it also gave JJ a chance to enjoy him to the level he, as a big brother, should. If you look at the most recent updates in the photo gallery, you will see where JJ is touching his brother with his right hand. Those pictures are not even two weeks old. Over the weekend, JJ no longer uses that hand. His right hand/arm just hangs at his side. So again, I am glad we made the decision we did. It afforded him the opportunity to do what he envisioned. Hold his brother. He states that it does not hurt but he simply cannot open or close the hand without difficulty. He can no longer hold so much as a spoon or pencil yet has never complained. Not once. He just simply attempts to adapt by using the left. JJ can, however and with some difficulty, still use the mouse on the computer and the controller for the PS2. JJ can also still walk but again, with great difficulty. The leg, and more specifically, the ankle seems to be tightening up more and more. JJs speech has also slipped some but there are still times when we can understand him. He is now sleeping in our bed (so we can assist him if need be) and does my heart well to hear him laugh while dreaming. He sounds so strong and with no concerns. I'm grateful for that.

On an up scale note. Matthew, oops, with all the Matthews I almost forgot to clarify..... McGowan may be in the process of getting out of the hospital and back under the roof he deserves to be, with his family in their home.

Please keep all the other children and their families in your prayers. Too many are struggling this vile monster.

Ecclesiastes 3:11 He has made everything appropriate in its time. He has also put eternity in their hearts, but man cannot discover the work God has done from beginning to end.

2007 is still very young and already the monster has claimed a third innocent (that we know of). It saddens me to have to inform the calling home of Ian Dolman. It has not been announced on his site but from reading the guestbook, the closest I can surmise is that he was called home either on the evening of the 11th or the 12th. Please keep Ian and the entire Dolman family in your prayers.

It has now been 15 full months since JJ's diagnosis. Again, trying to reflect back to when the first symptom appeared, we would have to guess close to 22 months since he first started fighting this thing. Those of you who have been following JJ know that his battle has recently become much tougher. Yesterday, he let us know that he "cannot open my right hand all the way". We'll work that issue with stretches as well (finger extensions). He has taken his exercises, go figure, in stride and actually reminds me to do them.

Folks, the answer and cure is out there. I know it is. I do believe that the doctors are doing what they can but are limited to what they have available. I believe the problem with finding the medical answer is that this DIPG is so rare that many in the medical drug industry just don't see it as a priority. In other words, there is not enough profit for them to apply the research to the level it can be applied. Ask yourself this. How many gray ribbons do you see on people's lapels or gray ribbon magnetic stickers on cars? Yeah, me too. BUT, I bet if I go out today I'll see a pink one for "breast cancer". Not that breast cancer awareness is wrong. It's not. It needed addressing and it was/is. Result: advancement of medical research and longevity. How was it addressed is the question. I think that pressure was applied through powerful lobbying and education of the general public. I for one, had never encountered a child with a brain tumor before JJs diagnosis and can wager most of the rest of the world is no different. Many families are or have created foundations in search of a cure for pediatric brain tumors. Each and everyone of these foundations are absolutely wonderful. They are informative and just. What I think we need to do is bring all these foundations together. The best way (me and my military mind) I can explain this would be.... Imagine each foundation as a militia. A militia can get attention but usually is not strong enough to make an immediate impact. Now, bring all these militias together and you have an army. An army not only merits attention, if it is large enough and well organized, can make an impact. An immediate impact. It's time to get the word out that these children, not one of them, are an acceptable loss.

Sorry I went political on you. Just my thoughts. Please forgive me if I have offended.

I just got off the phone with the Medical Director of the company running trials using the synthetic scorpion venom. Her answer was no. Well, more accurately, not right now. There is currently insufficient data re: the dosing for the radioactive delivery agent in glioma patients and her concern is that administration in children could cause more harm than good. (I suggested she check out the Other Kids and Lifted Up pages). She is hopeful that by Spring there will be enough data to begin opening doors (compassionate use or trials) for pediatric cases. (I again suggested she check out the Other Kids and Lifted Up pages).

Scientifically, I can certainly understand her position - administration too early in the process with negative results could get a potentially helpful medication scrapped. As a mother, however, it is my job to pursue avenues which we feel are or could be beneficial to our son. Am I upset with the results of the conversation? Is the Pope Catholic? I did, however, have an opportunity afforded very few patients/parents - I was able to speak with a decision maker - not just the people who answer the phone.

Okay, JJ had clinic today. Doctor Reddy gave him a pretty good exam and declared him fit enough for his weekly "push" of his weekly chemo, which he took with zero problems. Prior to Doctor Reddy entering the room, we had a psychologist student come in to exam JJ and, I guess, ourselves since we were offered assistance if we so desired. Naturally our spirits dropped since this is the first time we had a psychologist talk to us since diagnosis and thought the worst. Well, me being who I am and kind of knowing what they are looking for, figured I had one of two options. Clam up or vent. I chose door number 2. Poor girl but hey, she's going to see this when she has others on the couch so....... as she retreated from the room I have to give her credit, she handled it pretty well. JJ was also seen by a physical therapist and we were given several pages of stretching exercises for JJ to do. He was also supplied with a one handed walker to assist him in getting around by himself. I, myself, do not like it since it makes him look 90 but JJ is using it and it does appear to be helping him so I'm in his corner.

As to the results of the exam. Doctor Reddy made note of slightly less strength to his right hand since last Friday. The right leg is continuing to "tighten up" (hence the stretching exercises). JJ also stated that he had a slight headache while we were there but on a scale of 0-5 for pain, he said it was a 1. After all was said and done, we sent JJ out to the lobby to be with Grandma and had a chat with Doctor Reddy. To make it short, she seems to think that with the onset of symptoms, JJ could (should) be doing worse. She further stated that JJ continues to run outside the norm for a DIPG and these symptoms, although rapid to us, are coming on slower than normal. Just the same, she did tell us. "Maybe a couple of months but if things change or accelerate, could be sooner." Diana and I actually expected a much shorter time frame so even if with the discouraging news, are grateful that we do have more time with him than what we anticipated. We will remain optimistic as JJ has beaten these numbers before and will do so again. Since all pediatric studies now seem closed to JJ, Diana is aggressively contacting a pharmaceutical company directly to see if they would grant a "compassionate waiver" for JJ. We'll let everyone know "who" and "what" they say as we get the information.

Romans 12:12 Rejoice in hope; be patient in affliction; be persistent in prayer.

While we were driving on one of our many trips to NIH, Diana and I quizzed JJ on some of the things he enjoys and thought we would share them with you.

As for how JJ is doing. There are several concerns. Foremost are some serious balance issues he is dealing with. To the point that yesterday he pulled a table chair over to the living room/kitchen line to sit on in lieu of the kitchen counter stool. When I asked why, he stated that his balance made it hard for him to sit up on the stools. He has also asked that we assist him in getting around the house, although there are times he will get up and walk by himself to the bathroom. We have also noticed that when he is sitting on the floor, he will crawl over to a piece of furniture to help himself stand up. We have also taken note that although he is right handed, he is using his left hand to eat. You can tell that he is basically just letting his right arm/hand hang. Again however, there are times when he still uses it, albeit, with much less strength. Not sure on this one since I don't recall reading this on another child's site but his eyes appear to be open wider and pupils more dilated. When JJ walks, his right leg almost looks like it could be in a cast. Very straight with very little bend to it. I recall Cooper having a very similar problem and went to his page dated the 8th of September. I don't want to write what the next post said or when it was written. If you the desire, please visit his site. I think you could then understand why I don't have a desire to place it on paper. Even with all these things, JJ has not complained one time. He seems to just adjust the best way he can and we in turn, adjust to his needs the best we can.

On the agenda today is some shopping for the three boys and mommy while Nikki is in school. We will take the large umbrella stroller for JJ. When I told him this, we just simply nodded his head and actually looked a little relieved that we were not going to make him walk. Blood draw is also on the list today for tomorrows weekly commute to Birmingham and clinic.

Prayers to the other kids and their families. Right now, there so many of these children that are dealing with issues that I cannot list them all. Strength and healing to them all.

Romans 15:13 Now may the God of hope fill you all with joy and peace in believing, so that you may overflow with hope by the power of the Holy Spirit.

This morning my Heart broke.....again. We mourn the loss of the passing of Makenzie as she was called home to our Father. Please visit Makenzie's page and give a word of encouragement to the Tank family. Makenzie will be forever in our hearts.

Being the optimist let me thank all of you that prayed we were wrong. We were. The scan on the spine came back clear. Doctor Reddy thinks the pain might have been associated with the chemo as it can cause bone pain. JJ did receive his “push” today so we will be on the look out for effects like last Thursday.

On to the matter of the scan of the brain. Doctor Reddy stated that she did not see much difference in tumor size from the scan completed in early December but did further state that there were areas that were showing enhancement and were a concern. Judging by the way JJ was walking and talking today, I didn’t need a scan to tell me that. His balance has gotten to the point that he almost always needs to hold a hand while walking. I’m guessing that his speech has a comprehension of less than 25% of the time. His eye has more of a turn. Doctor Reddy verified that JJ is also starting to show weakness on the right side of his body (leg, arm and face). It was recommended that we increase his steroids by ½ mg daily to see if it would help him in some of the symptoms. Doctor Reddy will be able to tell us more on JJs condition after his exam next Wednesday.

When I commented on how I wanted to spend as much time as possible with JJ, Doctor Reddy stated “I agree, you should spend as much time with JJ while he is still well enough to enjoy it”. I know it was to be expected as I’ve read the other children’s battles but the “Still well enough…..” really stung. Being punched right in the nose couldn’t have brought as much pain as I came to the realization that my big man has a much more ugly battle yet to fight.

Psalms 25:1-2 Lord, I turn my hope to You. My God, I trust in You. Do not let me be disgraced; do not let my enemies gloat over me.

Not much to talk about tonight

Let me see.... JJ and I arrived at Children's South at 7:15. After checking in, it was announced that he would need a stick (for the contrast). When he found out he would need a second stick tomorrow, he asked if he could do both today. There was time and he was willing. Two hours later, we we're done. Um, that's two hours completely immobile by an unsedated six year old. Spine and brain are done. I couldn't be more proud of how well he did. Zero problems. Tomorrow, we still need to head down to see Doctor Reddy and get the results of the scans. I'm not looking forward to it but we need to know where my big man stands.

After the MRI, we headed straight to Women's and Children's Hospital in Huntsville where we found Matthew and his mother with all their bags packed and ready to go home. JJ couldn't get enough of his little brother. He had to be the one to push him out of the NICU, down the hall and out the door. JJ usually sits in the front with me in my truck, not this afternoon. In the back with his little brother. He started singing "twinkle, twinkle little star" to him before we were even out of the parking lot. His love is so evident that he fell asleep across the base of Matthew's carrier on the way home.... still holding his brothers hand.

Do I need to say it? Probably not but it does make me feel the need to anyway. Please continue your petition to God for the miraculous healing of all the children.

Just shy of an hour from now, JJ and I will be heading down to Children's South for his MRI on the spine. We were originally scheduled for 9:00 but when they called yesterday to confirm the appt, I asked what time they wanted us there. They said "no one was in front of him so 8:45 ...". We'll, um, we can be early if you like. To make it short, we'll be there at 7:30 and should be started by 8:00. Expected to be in the tube an hour to an hour and a half. No sedation. Friday is also scheduled for 9:00 with a swing by Children's after for his boost and then, hopefully, a read on the two scans. An added prayer or two today would be much appreciated and please don't forget all the other kids out there. Way too many of them are really hurting and not a one of them are deserving of it.

Although we have not been told this, our Matthew is expected to graduate out of the hospital today. No reason to keep him. He's doing great and we can't wait to get him home.

Just a quick update on Twink. The birth happened very rapidly and it would appear that it has slightly effected him. His oxygenation this afternoon dropped to 95-96. The doctors want him at a 98-99 rate. We have been told that he is in no danger but as such him being a new born, they have moved him to the NICU for monitoring and treatment.

Please welcome with me the arrival of Matthew Piotr (Peter) Lipski. Matthew arrived at 9:08 a.m (CST) this date. The little man weighed in at 6 lbs 5 ounces (hey, he was two weeks early) and a length of 19 inches. We decided to name him based on ~ Matthew with it's meaning "Gift of God" and Piotr (Old country {Polish}) with it's meaning "stone / foundation on which the church is founded". Both mother and child are doing well. Aunt Cheryl is staying up at the house informed us that JJ slept very little last night. Not symptom related. Excited at being a big brother again. We have several nice photos and will post soon.

In regards to JJ. There appears to be no further progression that we can tell of. We believe the leg swing is due to the right ankle tightening up. We've been working it and although he is still not walking like the days of old, he has not gotten any worse. Maybe even a little better. We have a date of Thursday for the spine MRI but need to work with the hospital since they say he cannot be sedated. I don't know, an hour and a half is a long time for a six year old not to move. They have also scheduled the MRI of the brain for Friday. Same as before. No sedation scheduled.

That's it for today. I'm running on close to 34 hours without sleep (hey, I tried to nap, just couldn't get the sandman to come) and need to close the eyes for a bit before heading back. Please keep all the children in the prayers and we give thanks to God for the blessing he bestowed upon us this day.

James 1:17 Every generous act and every perfect gift is from above, coming down from the Father of lights.

Okay, tonight sewed it. We will be requesting (actually already done via e-mail) a full brain and body MRI at the earliest available date (Thursday or later). I have gotten into the habit of patting JJs back every couple of days. I learned this from watching the doctors when JJ is given his exam. The purpose is to see if he has any pain on the spine and if so, might be the tumor moving and merit an MRI. Tonight, while doing so, he let out a pretty good squeal of pain when I was patting center of the spine between the shoulder blades. This was not a hard pat and actually not much more than what you would give a baby to assist him in getting rid of gas. Our fear is the the monster is starting to travel down the spine. It might explain the leg drag (swing). The squeal was good enough that I really don't think we need an MRI to know what is going on but we want proof to our suspicions. Pray we're wrong.

JJ woke this morning doing much better than yesterday. In the aspect that he did not complain of any neck pain, headache, or nausea/vomiting. Last night, he went to bed on his own at 6:00. He woke twice for the bathroom but went right back out until 6:30. This is our latest concern as he seems to be sleeping much more than at any other previous time. Matter of fact, he decided he wanted a nap around 2:00 and is still out. We have also taken note of his balance. JJ appears to be having a much more difficult time getting up and when he is walking, we have noticed that if he is near something, he places a hand out. To top it off, we have observed that he appears to be starting to drag (or swing) his right leg. His speech has not improved and I would say that he has pretty much lost the Bs and Ds. There are times he will call to us, when we answer, he seems to forget what he was going to ask us and just substitutes with an "I love you". Don't get me wrong, I'll take that phrase continuously but it's not what he is formulating prior to it. Not all the time, but on some instances he's forgetting.

With all the events now taking place, Diana and I have decided that it would be in JJs best interest not for him to return to school when it starts back up next Monday. We'll get with Creekside and work out a tutor to come out a couple of times a week so he can stay semi-current.

JJ has been battling this thing, as best we can tell, close to 22 months (coming on 15 months since diagnosis). I've read about as much as I can possible digest on this monster. I've read and wept over the other kids and know their stories. I see many things in JJ that I have read from these other pages. It hurts to say this but without Divine intervention, I know, from the other children, what symptoms we will likely witness next.

Please pray and petition to the Lord for JJ and all the other kids that continue to do battle. They have been robbed by Satan of a regular childhood and I can think of no one that is more deserving of the Lords attention than this group of children.

2 Timothy 1:12 I know whom I have believed and am persuaded that He is able to guard what has been entrusted to me until that day.

Today is not such a good day. Diana called me from work and told me that JJ is still commenting on the neck pain. In addition, he has a headache today and vomited twice. The vomiting may be from the chemo. The side effects say
1-2 days after administration so........ just troubling since he has handled it extremely well in the past. Needless to say, I'm home for the remainder of the day and actually until he starts feeling better. His appetite is also down. Granted he is down to 1/2 mg daily on the steroids but he is still on them and we didn't expect a drop in food intake so quickly. He is further saying that his limbs, specifically his legs are tired. When I got home around 9:15, he was napping in his bed. I crawled in next to him and he didn't even know I was there until 10:00. Not like him as he has become quite the light sleeper. We also got JJ to talk about his balance. He admitted that there are times when "it doesn't feel right". When I asked if he needed help getting around, he stated "maybe sometimes". All of this is very concerning.

The above paragraph was written this morning around 10:30ish. We gave JJ some children's Tylenol for the headache and a Zantec for the nausea. He appears to have rebounded quite well since then. His appetite is back and no more nausea. Energy level has risen as well and seems to be doing much better. Quite the scare today. With Diana still due, we have both come to the conclusion that one stressful thing at a time is enough for us. I don't think it to be healthy for Diana or the baby with these turn of events. She had her weekly appointment today and I had her ask that the baby be induced as soon as it can be done safely. The doctor stated that he cannot touch the child until the 38th week (or naturally on her own). Well, Monday is 38 weeks and is safer for both child and mother. Plus, Diana has been measuring almost a week ahead of that so call it 39. If Diana does not deliver on her own by then, we are to be admitted Sunday night (midnight Monday morning). We'll announce the name sometime after delivery.

Matthew 7:24-25 Therefore, everyone who hears these words of Mine and acts on them will be like a sensible man who built his house on the rock. The rain fell, the rivers rose, and the winds blew and pounded that house. Yet it didn't collapse, because its foundation was on the rock.

I have to start this post on a sad note. Little Ariana was called home this morning. She was called back at the age of 4. 4! This thing is so ugly that it has to be the work of satan for what else could be so cowardly than to attack children? Please place the Samaras family at the top of your list of prayer. I am quite sure they are in need of strength, especially her two brothers who are both older than Ani but yet very young and am sure very confused and hurting. Please keep all the other kids and their families in your prayers as well.

JJ had his next round of treatment and, as always, took it without any problems. I, on the other hand, had issues with the reception staff of clinic 8. JJ's appointment was for 9:45 this morning. We showed up at 9:25 and signed in. At 10:10, I had to go up and ask if they were going to even give JJ his wrist-band (identification which is usually placed within 10 minutes of arrival). Finally, at 10:20 they managed to get that on him. A half hour later before he was called back for his vitals. Another half hour before being called back to one of the rooms (where we waited for a doctor to look at him). Finally, at 12:48, he started his treatment. 3 hours late. Yeah, I was, what some might call, a little hot under the collar. Another 12 minutes and they could have turned JJ away for the day. That would have been very ugly. I know, I know, I said I needed to practice patience. Definitely a test today. Patient relations did come down and the issue was discussed and is supposed to be addressed. JJ is up to 50.1 lbs but we do anticipate the weight gain to slow and even drop as we have be given the green light to drop his steroid intake to 1/2 mg a day.

Yesterday, we received a phone call from Maryland. It was Doctor Warren just calling to see how JJ was doing and wondering what route of treatment we had chosen. We always thought highly of her and this just re-enforces this. She also let us know that she had received a copy of the MRI from our Houston trip (glad she has, we have yet to even get the bill for the copies). She took a look and was flabbergasted that JJ was disqualified from the study. She went on to say that the bleeding is a "pin point hemorrhage" (very, very small). She does find the treatment JJ is now on as very interesting and thinks it might show some promise since she still believes JJ to have a low grade tumor. I know that each parent has to decide what is best for their child and that each child is different. Just passing on that Doctor Warren is kind, caring, very intelligent and displays a genuine concern for her patients (even the ones that no longer are). We strongly recommend her for at least a consult.

As for JJ. When it comes to symptom display, today was not one of his best. His voice was pretty good yesterday but today, he was pretty difficult to understand. His eyes are still not tracking laterally to the left but is still acceptable in all other directions. His balance is still fine but you could see that he is struggling more with it when doing the heel-to-toe. He also appeared to be tired (and with the long wait in the lobby of clinic 8, can understand) and this might have contributed to the increase of symptoms. JJ also threw a couple more gray hair into my head when he commented about his neck hurting. This was addressed at clinic but based on the location of pain the doctors are not concerned with a spread of tumor. More than likely just a bad angle when sleeping. Quite relieved but like I said, a couple of more gray to replace the few remaining brown. If it continues, we'll request a MRI. If not, it looks like the next scheduled MRI will be in early February.

2 John 1:3 Grace, mercy, and peace will be with us from God the Father and from Jesus Christ, the Son of the Father, in truth and love.

I'm sitting here reflecting back and found myself thinking that it has now been two thousand and seven years since Jesus died for us so that we may be saved. I'll rejoice in that so with that thought, Happy New Year to all. What a true gift and blessing bestowed upon us. I reflect back 2,295 days ago, that day (August 18, 2000) God blessed Diana and myself as well as others. It was the day my son JJ was born. We were blessed again 931 days ago. June 14, 2004. The day my daughter Nikki was born. As we head into this new year, we can clearly see what may come and if it is His will, then we have to accept it. Does that mean we have given up any hope? No, just the opposite. We just have to accept the Lord and His plan above ours. We just pray that His plan does include the miracle we so desire. I don't know much, I really don't. I don't know the reason why this trial was placed on JJ and the rest of us. For that matter, I don't know why this monster even exists but it does no good to try and figure it out. It's way above me. What I do know is, that the blessing God gave us 2,295 days ago will continue regardless of the outcome. I do know that my love for my family is unconditional and absolute. I do know that this trial has given us many more friends and an extension of the family I did not think possible. I do know that this trial has brought us closer to Christ. With what I do know, let me say..... thank you to all of you for all you've done.

We spent last night doing the regular thing. Sharing our fireworks with the neighborhood families. The show was shorter than last year but, I think, had more booms, bangs and crackles. A couple were a little bigger than I thought allowable by law. They weren't but by dingy, they were close. My evidence of this statement was lying in the back yard when I woke up this morning. I shoot from the street and up on the corner. This is the first time in three years I found stuff in the back yard. Well, I didn't hear any complaints from the neighbors so I guess we're okay. Good thing we had a solid soaking of rain the night prior. Helps ease the mind of burning down the neighborhood. JJ spent the show underneath the fireworks with me and actually lit the final two, the finale'. Awesome finish.

There is no change in JJ's condition. At least none that we can identify. I believe the cut back in steroids is starting to show the results we desire. His appetite is not as great and he only wakes a couple of times during the night. Yesterday, he woke at 5:20 and did not go to bed until 8:00. He actually slept through the night until I came in at 4:30 to check on him. Quick trip to the bathroom and back out until 6:00. Much better.

Please keep all the children in your prayers. Special intentions to Kate H, Matthew, Chase, Mckenzie and Ariana.

Psalm 145:18-19 The Lord is near all who call out to Him, all who call out to Him with integrity. He fulfills the desires of those who fear Him; He hears their cry for help and saves them.

JJ started back up with his treatment yesterday. No problems what-so-ever. Other than the 1 1/2 hour delay getting seen that is. See? I told you NIH spoiled us! Oh well, I guess I'll just have to learn to practice patience again. We had the special treat of having a chair between our new friend Andrew (and his family) and James Howell (and dad). Andrew continues on the same medication as JJ and James was there for some blood. Prior to treatment, JJ had his basic check up and was given a "looks good for his next round". My boy is standing at 44 1/2 inches and weighing in at whopping 49 pounds. While we were talking to the doctor, we did ask if we could wean JJ off the steroids since there are no symptoms that merit his continuance. The doctor agreed. JJ has now been cut down to 1/2 mg in the morning and 1/2 mg in the evening. We're praying that next Wednesday we can cut down even further and maybe get him off them completely soonest. Both Diana and I really want to get him off these things. Not only does it affect his weight but his sleep pattern is totally messed up with him getting up several times during the course of the night. In turn, the loss of regular sleep has led him to going to bed anywhere between 5:00 and 6:30 on the average. It's been more than a month since he has slept straight through the night. The only bright side to this is, we're hoping that is what is causing him to nap more. No increase in any of the symptoms. His voice is still understandable but nasally. The eye has not adjusted back but also has not made any extreme turn in either. Balance is not perfect and his stride while running is definitely shorter but he is still running. He has also just come in and asked if we could go out and ride the bikes. I take that to be a pretty good sign. I don't think he would ask if he was dizzy or having perception problems. It's a nice day here (mid 50s and sunshine) so out we go. Just came back in and he looked good. No problem turning or pedaling. He still claims not to see double and I still claim to believe him. Swallowing has not been an issue. I suppose I could go down the rather long list but it's much easier to leave it with no other signs present.

Santa Claus made a rather nice stop at the house this Christmas. To the point that I will probably have to do some rather pretty nifty woodworking come this Spring. Diana just called from her weekly doctors appointment. The baby has decided to go "head down" The next statement from him is what's getting me. "Well, with the baby making this turn, I suppose I can expect to receive a call from you anywhere from tonight to two weeks from now". Just a reminder that Diana's due date is...um...err.... was suppose to be the 22nd. I guess that we'll have to go and announce his name pretty soon, huh? JJ is excited of having a little brother and Nikki is Nikki. Oh, okay, I'll give her a break but only because she's 2 1/2.

Please continue your vigilance of prayer for all the children. Many are very much in need of extra and all deserve it.

2 Chronicles 15:7 But as for you, be strong; don't be discouraged, for your work has a reward.

If you will recall on the 18th, I addressed a breathing issue on JJ. The "little grunt"? It is not related to his condition. How do I know? I've been doing the exact same thing for the last three nights. No doubt about it, flu related. This little bug that he, and then I, got is a strange little fella. Fever does not come on right away. Weakness in the limbs and prickly skin (also addressed on the 18th) arrive first. Fever doesn't come on until the next day or two. No guessing on what he was feeling as I am experiencing what he once did. It feels so good to feel so bad. Of course, he kicked the bug in the teeth shortly after the ER visit. Me? Jury is still out but feel I may be acquitted in the next day or so. This is one nasty bug. I hurt all over. How he did not say something to us is beyond my comprehension.

With the flu, JJ's trip to Children's was postponed for a week. There are too many children that are susceptible to viruses while seeking treatment and Doctor Reddy thought it in their best interest that JJ not introduce our little friend to them. Good call and, trust me, we understand. We'll pick it back up next Wednesday. JJ does appear to be more fatigued and sleeping/napping more than previously posted and may have a little more decline in his speech.

Last night we learned of little Alicia being called home. Please say a extra prayer of strength for her family and keep all the other kids in your thoughts and prayers.

Diana said it on the 22nd (I was too weak to raise my hands to the keyboard) but would like to reiterate our heart felt thanks for your caring for our son and bringing him into your lives and hearts. As poorly as the circumstances that brought this upon us, we have discovered that family can extend beyond the traditional lines. God Bless each and every one of you. Please join me in giving thanks for the reason for this season.

Luke 2:28-32 Simeon took Him up in his arms and praised God, saying, Lord, now I can now die in peace! As you promised me, I have seen the Savior you have given to all people. He is the light to reveal God to the nations, and he is the glory of your people Israel!

JJ appears to be done with his bout of the flu, but in the spirit of giving, gave it to Daddy, who actually beat JJ's temp by running it up to 104.5 - Way to Go!

Those of you who are familiar with JJ's Song of Love hear the mention of Battlefield 1942 - he's the only 6 year old I know who has a favorite WWII battle - Bocage. Anyway, his uncles have installed TeamSpeak onto their computers so that they can talk to each other as they play online; last weekend we did the same - what a riot! Hearing JJ laugh and tell them, "I'm going to get you." is medicine for all of us.

You will notice the continuing addition of children to the Other Kids and Lifted Up pages - our plan is continue to honor children we find to this site until there are no more. That day can't come soon enough for any of us.

As we head, oh so quickly, towards the Holydays, it is our sincere wish that during this season of the Lord's birth and throughout the new year, each of you find yourselves as blessed as we have been. Thank you for caring about our son and bringing him into your lives and hearts.

Matthew 1:23 "Look! The virgin will conceive a child! She will give birth to a son, and he will be called Immanuel (meaning, God is with us)."

We slept in our bed last nig.... this morning. As Diana said, JJ has the flu. Got back home about 1:30 and put him down for the night. Having the flu would explain a couple of things and am actually quite relieved that is all it is. Temperature comes and goes but is not near as bad as last night. The 104.4 had the blood pressure up for good ole daddy. As we were taking the temp, I placed my head on his chest to listen to the heart and it was racing like he had just run a marathon in which he came in first. That was the biggest reason (for me) to get him seen. Very, very rapid. JJ is now on a prescription medicine to help get this thing out of him and we hope this does not delay tomorrows next round of treatment. Home today for all of us except Nikki who did go to pre-school.

It seems that even after getting his shot this season - JJ has the flu. They are waiting to hear from the Children's Hospital neuro-oncologist on call. JJ seems to be doing well, tho. I heard him laughing as he sank Jim's boats on Battleship.

The last time we had an Emergency Room update was May. That turned out to be an ear infection. We'll see what tonight's visit brings - as the prompting for the trip was a temperature of 104.4 which dropped to 102.7 or so in 30 minutes (after some Dimetapp) and a really fast heartbeat. The fever is also teamed with congestion & cough; this could be caused by the constant changes in weather (it was in the 70's today). Jim is with JJ right now, as it would be very difficult for me to try and carry almost 50lbs of little boy. As I was putting on JJ's shoes to head to the hospital he was getting upset - when asked "Why", he responded with "I'll miss Christmas". That won't happen - Christmas will find him wherever he is.

I hope to update on this before anybody knows that it's going on - we'll just have to see how busy it is down at the hospital.

Romans 12:12 Rejoice in hope; be patient in affliction; be persistent in prayer.

I know what you’re thinking from the title. Am I tired? You bet. I’ve been tired for about 14 months now. But that’s not it. Next paragraph. Tomorrow marks 14 months since diagnosis. When we reflect back, he started showing symptoms as early as April 2005 with his voice. 21 Months! I don’t blame the doctors for not catching it earlier. It was one symptom and easily explained away. Referral to a speech therapist. Late May was the eye. Same thing, referral to the ophthalmologist and then glasses. Again, one symptom at a time and this monster is just too rare for a pediatrician to catch the way it came about. Nothing else until the balance in early October. Then we found out. 21 months! Gee, I guess I really am tired.

The title describes what JJ told us about his legs today. He went on to say that they have felt tired for the last three days. Does this affect his walking? No, not that I can tell. He gets around the house with no difficulty. Although he did say that he is having some small problems with hills. I have noticed that he seems to sway more while standing still. Kind of catches his balance with a small step back from time to time. So, balance is again an issue.

Eyes have always been the first place to look and I have noticed that when he blinks, the eyes roll up just before he does this. Not normal.

Another thing is his breathing. I really don’t know how to describe it. I guess the best way would be…. Anyone ever really have sore leg muscles and then you try and walk? You kind of throw a little grunt with every step? My little man sounds like that from time to time. It’s not a constant but definitely worth noting and telling Doctor Reddy this coming Wednesday.

You ask him if he hurts and the reply is always the same “no”. He did mention last Thursday that his leg bones (thighs) “hurt” but looking at the side-effects of the most recent medication shows “bone pain”. He also mentioned on Friday that his hands felt “like they do when I wake up from the magic milk”. This was very brief (maybe 10 minutes). Again, looking at the side-effects is Numbness/tingling. No more complaints of headaches, no nausea or vomiting, no difficulty swallowing. Just the same, and I didn’t think it possible, I’m much more concerned than I was last week.

Once I get my head back on straight, I’ll tell you guys what we did this past week but for now, I think I’ll leave it be for the afternoon.

We mourn the loss of two more children from our extended family, Colby and Yasmine. The loss of both these beautiful children during this most special time of the year is very difficult. Please give the families extra prayers and keep petitioning to the Lord for all these wonderful children.

1 Peter 4:12-13 Dear friends, when the fiery ordeal arises among you to test you, don’t be surprised by it, as if something unusual were happening to you. Instead, as you share in the suffering of the Messiah rejoice, so that you may also rejoice with great joy at the revelation of His glory.

The first round (of a six – round cycle) has been successfully completed. As always, JJ took his treatment in complete stride and no complaint. Round 2 is next Wednesday at 10:15. While at the clinic, we were blessed with the presence of James Howell and his family. James was being admitted for his final round of overnight treatment and is looking fantastic. James holds a very special place in our heart. He was admitted across the hall from JJ last October and the two saw each other regularly during their radiation treatments. JJ and James get along just great and we pray for this final round to be just that, James’ final round. Further, during treatment, a mother of one of the other children in the clinic overheard me telling the nurse where we were from. She came over and introduced herself and stated that she and her little boy Andrew (2 ½) were also from Madison. Matter of fact, they probably live no more than 2 to 3 miles from us. It turns out Andrew is taking the same treatment (7^thround) that JJ has just started. Andrew was diagnosed with a tumor behind one of his eyes and that although it is not a DIPG, it is, like JJs, inoperable. We exchanged phone numbers and do expect to stay in touch.

As proven by Andrew, there are other families who we have not heard about that are going through some extremely difficult trials. We are again blessed with such a group of family and friends who have rallied to JJ. Please extend your prayers to those that have not been given such a gift.

James 1:17 Every generous act and every perfect gift is from above, coming down from the Father of lights.

Okay, we all just returned from Birmingham where JJ had his monthly clinical check-up and our consultation with Doctor Reddy. First, the check-up. In the last couple of clinical tests, I was not in the position where I was able to observe JJ's eyes when assessed, today I was and am discouraged by what I saw. When checking the lateral movement, JJ's eyes did not track well to the right and when going to the left, he failed to follow, instead of moving to follow the finger, they went slightly to the left but moved much more up and then started to jump. The last time I saw them act that way was at original diagnosis. Very, very disheartening. Doctor Reddy also noted more of a decline in his speech since last month. I still do not recognize any further symptoms other than the two mentioned. Energy is good. Swallowing is not a problem and of course his eating is on the edge of insanity with the steroids. JJ is up to 46 and a quarter in weight. That's about a 5 pound gain in the last three weeks. I think Diana and I are managing his intake pretty well. Sometimes we give him fruit when he hits us with a "I'm hungry" and this kind of keeps the calories in check. Balance is not an issue.

Now, on to the next step. Many doors (studies) are currently closed for one reason or another and we find our options severely limited. With the increase of symptoms, we both feel that we need to attack this monster and now. We are going to go with a proven medication that has completed all studies. This medication has shown results in slowing low grade brain tumor progression. Problem is, Doctor Reddy cannot recall it ever being tried on DIPG since most of these are high grade. Even with the above present symptoms, Doctor Reddy did state that the recurrence is still slow by DIPG standards and she believes JJ's tumor might still be low grade. Second problem is, there is no way to know if this will help JJ or not. Again, due to the symptoms emerging, few to no available viable options of alternative treatments, we feel action must be taken now rather than wait, so we will. Starting tomorrow morning, JJ will be administered a combination of Carboplatin and Vinblastine Sulfate once a week for a period of six weeks. In the last post, I hinted that JJ may end up hospitalized from treatments. Well, the carboplatin would be the culprit of this. BUT, we were thinking it would be a once a month administration of the medication and at a very high dose. Since it will be done weekly and at a lower dose, it is believed that his system should take the effects fairly well and do not anticipate any overnight stays other than our home for the holidays.

On a side note from our trip to Houston. I have to say that the trip was not all that pleasant. The lodging was sufficient but I am not impressed with the way the staff handled JJ or ourselves. Medically speaking, they did their work just fine. Personal notification on results is another matter. Instead of being called back into the hospital so we could review face-to-face with the staff the results of the MRI and blood tests, we were simply called on the phone. We never had a chance to go over anything with them in depth and found the overall experience to be cold and impersonal. We have now dealt with various medical facilities enough to, as we are leaving town, request the release form so that Dr. Warren (the referring physician) and Dr. Reddy (JJ's primary neuro-oncologist) are able to see the latest imagery as we try to make a decision for our next step. They send us the Medical Release of Information form and MRI report. Cool, except as we are going over the paperwork we come across this, and I quote "Copy fees: You will be billed for copies according to state law. If fees are owed, a bill will be sent to you by mail. Once payment is received, Texas Children's will provide the copies requested". How 'bout that? We go out for a study and now we have to pay to get the information they were only so kind to provide over a phone. Best is yet to come. Check out the price tag.......

Fees as per Texas Health and Safety Code, Chapter 241, effective September 2, 2005.

We have no idea how many pages this report is (or what font size they will use). The final kicker, we don't get the information until they get their money. Watch it be one or two pages and we still get charged $38.01. Can't wait to see how much the cost of the MRI CD is. I'll let you all decide if this hospital is actually trying to help children with terminal illnesses or just trying to make a profit. I think you all know my thoughts. Just the same, I will not harbor ill will towards them.

Please don't forget to pick up the sword of scriptures and stand next to all the other kids and their families.

Mark 11:25-26 And when ye stand praying, forgive if ye have ought against any: that your Father also which is in Heaven may forgive you your trespasses. But if ye do not forgive, neither will your Father which is in Heaven forgive your trespasses.

We’re back in the great state of Alabama. Our travels were uneventful with God gracing us with only two slow downs and fine weather throughout. We made our half way stop at Grandma and Poppas house on the way home and spent an extra day on the Mississippi Coast. The effects of Katrina are still very evident with many families still living in FEMA supplied campers/trailers. The devastation from the storm was immense (understatement there) and I ask that you please give a moment of prayer to all those still affected. Now, with that said, the people of south Mississippi are strong and resilient. The coast is a jewel and they know it. The rebuilding is happening and the coast is starting to take shape once again, albeit, slowly.

On to JJ. He is doing well with no new symptoms to speak of. His eye seems to have a more permanent turn but that’s about it. The glasses do seem to help. His speech is, for the most part, very understandable except when he’s tired. Balance and swallowing are not an issue. JJ has put on some weight since the reintroduction to steroids and was standing at 45lbs as of last Monday. That’s about a 4lb increase in a little less than two weeks. With the steroids have come some mood swings (but nothing major) and a break in his sleep pattern. The bags under his eyes are still there and I still do not know if this is related to his condition or just from the new hours of rest (or lack thereof). He was up, off and on, all night and decided that 4:00 a.m. was a good time to get up for the day. Of course he was hungry and polished off a large bowl of “Crunch Berries” and is now playing with his cars and watching the Disney channel.

Doctor Warren gave us a call yesterday afternoon and has made her recommendation on what treatment she would next give JJ after the setback from Houston. We will discuss this with Doctor Reddy on Tuesday when JJ is seen in Birmingham before making any decision. I’m hesitant stating what it would be since nothing has been decided but can tell you that JJ may take a large hit on his Platelets and ANC again if we go with this. To the point that Doctor Warren said that JJ may end up in the hospital over the holidays. Remember from the October posts, an ANC drop would make JJ very susceptible to infection and a platelet drop would mean transfusion(s). Not the kind of Christmas I’ve envisioned for this year (or any year for that matter) but will weigh what is best for him as the first priority.

Many of the “other kids” continue to fight the monster and need your help. Please pick up the sword of prayer and stand next to them.

Luke 11:9 So I say to you, keep asking, and it will be given to you. Keep searching, and you will find. Keep knocking, and the door will be opened to you.

Well, we off again this morning. Next stop Houston's Texas Children's Cancer Center. Of course, we'll do a little turn further south than we have to and stop by Grandma and Poppa's house on the Mississippi Gulf Coast for a night over.

I'm linking the study again (http://www.txccc.org/content.cfm?content_id=1338) and those that wish, can explore other clinical trials located in the upper right portion of the page. We feel that this one is the best option for JJ at this time and pray that God supplies the knowledge and wisdom to the doctors to discover the cure we all so desire. Monday, the 4th, will be a very busy day with several different tests and yes, another MRI (scheduled for 1:30 p.m.). We got spoiled by NIH with same day results and truly hope TCCC is just as quick. I'm not sleeping enough now and know I won't get much, if any, until we get the results. We'll let everyone know as soon as we know.

As for JJ, his speech and the eye are the only two things he continues to display. He does continue to have "bags" under the eyes but I don't know if it is related or if he is just not sleeping well. He finally got to go back to school Thursday and Friday and showed no worse for wear when he got home. The steroids does not appear to have effected him much, if any. Appetite remains good but not over eating and no serious mood swings. His energy level remains high and we have found a great source of calories which he absolutely loves. Egg Nog. JJ takes his meds with it, drinks it constantly and would probably bath in it if given the chance. I don't know what we're going to do after the holidays when it doesn't become so easily available.......

Many of the "other kids" continue their struggle as well and I ask that you please remember them all in your prayers. Justin's results are back and show about a 5% increase in growth. Katherine is seeking new options with recent growth. Yasmine, Kate, Ani (Ariana), Alicia, Hawk, Leslie, Jenna, Matthew, Chase, James, Andrew ........ there's no end to the names. The thing is, they're not names, they're children. Children with a inner strength that is completely remarkable. A strength that has to come from somewhere other than this place. You can guess where, I already know.

1 Chronicles 16:10-11 Honor His Holy name; let the heart's that seek the Lord rejoice. Search for the Lord and for His strength; seek His face always.

Just a short post to let everyone know we made it home in one piece. Disney was, as always, magical. The weather was in the upper 70s and sunshine. JJ has matured to the next level of rides and now claims his favorite as "Splash Mountain".

JJ seems to be doing well in all aspects with the exception of his speech, which has had a slight decline but still understandable. We head out again this Saturday for Houston and will update via the CarePage when we can.

I would like everybody, once again, to place all the "other kids" in your daily prayers. Several of these special children have had developments that are unfavorable and can use all the prayers possible. Please.

Mark 10:27 Looking at them, Jesus said, "With men it is impossible, but not with God, because all things are possible with God.

Today marks 13 Months since that day of terrible news. A vivid day burned into my memory when we were told JJ had only "a couple of months to maybe a year". A day I cannot stand to recall but yet cannot ever forget. As for JJ, he continues to do well but has shown some turn of the eye and speech issues again. Balance does not seem to be a factor as he is riding his bike, running, jumping (albeit not high or far). Yesterday, he was teaching Nikki how to do forward rolls. God love him. Those two get along so very well. He enjoys teaching, playing and loving his sister and she just flat out idolizes him. His sleep is very deep but not troubled. Point of concern is JJ has complained of a couple of headaches in the past two weeks. JJ had his monthly check-up at Children's last Tuesday and was given a "he looks good" but Diana did address the headaches with Dr. Reddy. She does not seem to be concerned since JJ has not vomited during these episodes. Okay, you're the doc but, like I said, I recall that day. When we were told "why isn't this child in the ICU" and that he "should have been throwing up and complaining of some major headaches" but yet he was laughing and climbing on my back at the time. Regardless of the amount of spinal fluid build up on the brain, not once did he complain of pain or vomit. So, I have my doubts and concerns but do know Doctor Reddy is just going off the symptoms "play book". Since we are scheduled to head out tomorrow for NIH, we held off making it an issue. Prior to us leaving, we will bump up JJ's bi-weekly blood draw to Monday and ensure his counts are still acceptable. As of Friday, he was still well within the protocol numbers but did have a drop in platelets, down to 198,000. ANC is still very good in the 3000+ range.

If we go as scheduled. JJ's MRI will be this Wednesday at 11:00. Big day of prayers are needed as I believe Justin and Grant are also scheduled for MRIs. We'll have Thursday off and start the next round of treatment on Friday . If all goes as expected, JJ will finish up the following Tuesday and then, since he has made it a constant topic of discussion, we will leave Wednesday for a three day four night stay in Orlando. God has graced us with JJ's continued level of energy and abilities to make this trip. Tie that in with the reemergence of some of these symptoms and I ask you, how can we not make the trip? JJ's uncles Mike, Tom and Alan plus grandparents are footing a large part of the bill for the hotel and admission to the magic. We do plan on stopping back by "Give Kids the World" to see JJ's star. We will post updates on CarePages.

Folks, there are many children and their families listed on the "other kids" page, as well as those that we know not of, that are in need of some serious prayer. All of them for that matter but several of them have recently received some very heartbreaking news. Please go see them, read their stories, drop a line of encouragement and then pray for God's uplifting mercy upon them. I don't think any of us will understand why this is happening until we are called home.

Proverbs 3:5,6 Trust in the Lord with all your heart, on your own intelligence rely not; in all your ways be mindful of Him, and he will make straight your paths.

If you'll recall from the 11th, I had an idea on making some changes to the "other kids" page that I had to run by Diana. As I looked at the page, I realized that it was all too easy to not see the children behind the names. No, no, I'll not allow that to happen. Look at the pictures! These are children that have been attacked through no fault of their own! The adage fits here. A picture is worth a thousand words. Can you see it? They are loved. Each and every one of them! I'll not let that go to the wayside by them becoming a medical number in some textbook.

You can see the result of our changes by honoring them with a visit to the "other kids" page as well as our adding the page "lifted up". There were a couple of children that we were unable to capture a photo and place it on the page. Parents, we are using photos from your sites but if you have a different photo than what we placed, please send it to us and we'll get it up soonest. On the other hand, if you feel that we should remove the photo, please let us know that as well and will edit according to your wishes.

Oh, I forgot. At this point, we have added the music "Angels among us" to the "Thanks" page. There truly are angels out there that have helped us through this most trying time and feel that the song is appropriate.

Psalm 32:8 I will instruct you and show you the way to go; with My eye on you, I will give counsel.

Well, we're a week away from hitting the road again. JJ has shown no further symptoms than from our previous post and if anything, seems to have improved some. It may just be us but it seems that his speech has gotten clearer and even his eye does not appear so pronounced. Both are still there but he does seem better. This would be about right. The O6-BG is suppose to kick in around the second/third week and that's about where he is. Please keep the prayers coming. It's through Gods mercy and grace in the knowledge He provides that may be the miracle we seek.

Several more children have been added to the "other kids" page. Please visit them often and have them in your prayers constantly.

Ephesians 2:8-9 For by grace you are saved through faith, and this is not from yourselves; it is God's gift - not from works, so that no one can boast.

Just a quick note. I'm sure you noticed that sixteen more children were added to the "other kids" page. The list is much, much, much too large and these are just from people we know or are learning about. Each and everyone of these children deserve our respect and, as long as there are no objections from their families, I will continue to honor them through their stories.

I've an idea on making some changes to the "other kids" page that I need to run by Diana. Please check back from time to time and keep all these children in your continued prayers.

Let me start with asking all to remember little Devan who was called back to the Lord on the 6th. Please visit her site and let the family know that they do not stand alone in this. For that matter, please see all the "other kids" as many are fighting issues that they should not have to.

On to JJ. Last night was the first time ever that he has commented of his "head hurting" and that he was "tired". He had been on the computer playing a game and we were hoping it might have been eye strain but when we asked where it hurt, he pointed to the top left rear of the crown. We gave him some children's tylenol and 15 minutes later, we asked if he still hurt and he said "no". He also seemed to have gotten his second wind and when it came on bedtime, he wasn't ready to go. So I ask you. Is this related to his condition or was it related to being on the computer? I really want to believe computer but don't think so. JJ's speech has declined some, especially in the evening, but for the most part, is still understandable. It has though, gotten to the point where we are having to ask him to repeat what he said more often than not. I also think his balance is slightly off as I have also noticed more of a sway when he is standing still. These things I mention are not a constant but seem to be more pronounced as of late. On the other hand, his eyes seem to be more in sync, walking and running are still non issues as well as appetite.

If you are discouraged by this news or even if your not, please go to Mackenzie's page and read their latest update. I don't know if you'll find peace with it but the message is very comforting to me. Combine it the message left by the Hammack's plus our post from March 1st.....

"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...."

Psalm 16:11 You reveal the path of life to me; in Your presence is abundant joy; in Your right hand are eternal pleasures.

We've been home long enough to have JJ's blood checked twice already, and both sets of numbers look good (the second set even better than the first). These will continue to be monitored each Tuesday and Friday. It seems our little boy is very much a little man. On Tuesday when it was his turn to go back, he pushed Diana back into her chair and said, "I don't need you, Mommy." and went running to the lab by himself.

We returned from Maryland in time for JJ's school Fall Festival - he had a blast. There were inflatables and games and prizes to be enjoyed. The school and volunteers put forth a lot of effort for this & JJ was in much better shape to enjoy it this year than last (he had just had his 3rd Vent done that week). Nikki was even able to go down the big slide; one of our neighbors took her up and slid down with her since Daddy was watching JJ on the obstacle course and Mommy is too far along to climb up. There was even a table selling JJ's cookbook and t-shirts. The support from the Creekside Elementary School community has been incredible!

Tuesday was Parent/Teacher Conference day - we were glad to be able to make it (last year we were at the hospital). We were able to come away with ways to make his days away from school more effective and more in line with classroom time. Even with his time away from school, JJ is doing well.

We continue to be blessed - offers of prayers, time and support are so much in evidence. Our thanks go out to each of you. We do ask that prayers continue to be offered, not only for JJ, but for all of these little heroes. They continue to amaze us each day with their strength and faith.

1 Corinthians 16:13 Be alert, stand firm in the faith, be brave and strong.

Let me start by welcoming all to the newest diary page. As you can tell, we have tried to create a new page every six months and since we recognized JJ's one year mark from diagnosis on the 19th of October, it's time to start a new page. In the past we placed the entries in the respective order but I think it will be easier for all to read if we place the most current update at the top of the page and will do so from now on.

Now, on to events over the last month. I guess the best place to start is from the beginning of the trip. We left on the 3rd (Tuesday), and a day earlier than we had to, to make stops in Knoxville (Zoo) and in Virginia (Luray Caverns). As we left, we stopped at the Lab and had JJ's blood drawn and then immediately left. Spent the night in Knoxville and then the next day we were between Bristol and Roanoke when we got a call from NIH asking if we had received the message.

~ Uh, nope.
~ Well, JJ's platelet counts have fallen from 98,000 to 39,000 and Doctor Warren would like you to get them
checked.
~ (not knowing better), okay, we'll be in DC tomorrow or later tonight if we really need to be.
~ Um, no, Doctor Warren wants them checked...... NOW.

It was then explained that people with brain tumors have a risk of bleeding into the tumor if the platelets fall too low (below 50,000). The patient could basically fall asleep and not wake up. With this new set of information, I found exit 70 (Whythville), the Hospital, and the lab. JJ's count had risen to 55,000 and we were allowed to proceed at our pace and plans. Did a night at Roanoke and then Luray Caverns the next day on the way into DC. Friday, blood work and MRI. JJ's MRI showed some very minor progression to near stable. Doctor Warren stated that the next round of treatment should be the deciding factor if the O6-BG will work for JJ. I look at it as, the tumor hasn't risen it's ugly head like it could/should have so "stable" is good for the moment. His Friday afternoon counts had his platelets down again to 44,000 and then 40,000 so the late afternoon was spent getting a platelet transfusion. Saturday, 196,000. We could not start his treatment on Monday as he had to prove that he could produce the platelets on his own. For Monday and then Wednesday, he leveled off in the 180,000s and by Friday, he had climbed into the 200,000+ range but then the next hurdle showed up at the same time. His ANC numbers had dropped into the 700s. JJ would now have to wait until they rose above 1500. By Monday, they were at 504. Wednesday, 663. We're thinking, okay, he's coming up. Friday, 481. My little man had to mask up for the weekend since he was at risk for infection. For the next two weeks (we were now three weeks away from home), it was blood draw and monitoring. It took a while but he did come up and as soon as JJ met the minimum standards of protocol, he started up on his next round of treatment. JJ seemed to handle this round of treatment with no problems. The chemo dosage was lowered (due to his previous count problems) from 55mg down to 40mg daily. He did show some sign of fatigue on a couple of days and a "my belly hurts some" but nothing that a small nap didn't take care of. The belly aches were from the medication and usually passed within an hour of treatment. I do have some concern in the aspect that he had gone three weeks (six if you count the time since last treatment) without anything attacking this thing but do understand why he had to wait.

As for JJ, he seems to be doing pretty well. His energy level remains high (as demonstrated by his swimming last night and this morning in the hotel's pool) and even with this latest round of chemo, has a very good appetite (he has even put on a couple of pounds). I think that, just prior to the last round of treatment, JJ did show more turn to his left eye and a slight decline in his speech. The last couple of days has not shown that though and seems to be more around where he was at the beginning of October.

If I may, I want to pass on a positive story. There is a child we met at NIH who was diagnosed with a DIPG in September 2005. She did not respond too well to her radiation treatments and had to start on the O6-BG study sometime in early 06. The first five or six months of treatment showed stabability of the tumor but in August, her MRI showed a tumor decrease of 25%. September, another 25% decrease. October, more decrease (but we did not get a % from her parents). We all seek options and then have to decide what we feel is the best path to save those that we so very much love. There is no wrong or incorrect decision. Our choices are difficult and we do the best we can with the knowledge we have available. I cannot tell you if this study is the way nor do not know if it is the answer for JJ, or any other child with this awful thing, but did feel the need to pass on the story.

With the delay we encountered this trip, we decided to adopt a "portable" update solution, as this website is based from home. JJ now has a CarePage, which we can update from any computer system. www.carepages.com will get you to the main page, then, if you don't already have a CarePage login, you will need to create one. Once you have arrived at "Visit a CarePage", you will type in jjsmiraclepage.

This thing has continued to claim the innocent and it needs to stop. Within the last two weeks, Leo, Hannah and Katya have been called back to the Lord. My heart is broken with their passing and my thoughts and prayers to their families. Our continued prayers go out to all the children and families that continue to battle this thing.

Romans 12:12 Rejoice in hope; be patient in affliction; be persistent in prayer.