Jackson's Update

Hello Everyone,

The last couple of weeks have been somewhat eventful. Jackson's appointments in SF went well. No MRI on the 24th. It was rescheduled for April 5th because they added the spine to the scan. Another trip, but peace of mind that his body is clear of disease. His oncologist said scanning the spine every three months is on the aggressive side, but she said she would be fine with that if that is what we wanted to do.

So Jackson had his MRI on Tuesday, and of course they were running behind. Jackson has unfortunately gotten used to the waits. His clinic appointment was immediately following the MRI, so we went upstairs just after, and waited for his doctor. She came in with good news and bad news. Good news, or should I say Great news, is that there is no tumor! So yay, clean scan in that regard. Bad news is that they found a blood clot in the left transverse sinus between the brain and the skull. He has had no symptoms, just happened to find it on the scan. They admitted him to PICU that night because they were planning worst treatment scenario which is start on heparin drip for a few days and then go home with Lovinox injections daily. They decided to back track because he was asymptomatic. They just started him on IV fluids and gave Lovinox injection Tuesday night. They checked his levels a few hours later, and when the results came in on Wednesday they let him go home. So I get to give him more shots at home :(. This time it is 2 times a day for 3-6 months. They will check his next scan in July to make sure the clot is dissolving, or gone completely. So, we went up Tuesday with no supplies, clothing, etc., and thank goodness we only had to stay one night opposed to three or more. Jackson does so well with all of the "bumps" that come along. He has already had 4 doses of the Lovinox and he handles it so well. When I explained to him what was going on, why he was in the hospital, and what we needed to do to fix it he just said "OK". He didn't even stress over the IV. He amazes me all of the time!

Jackson's endocrinology appointment and his neurology appointments went well on March 23 and 24th. Endocrinology is already talking about starting growth hormone anytime after May. We have another appointment in July when Warren will go with me and we can discuss it further with the doctor. As of the 24th, Dr. Gelfand, his neurologist didn't need to see him until a year out, but now, after finding the clot, she needs to see him in July also. So July will be a busy month again. He does have to see his oncologist monthly while he is on the Lovinox to monitor his blood levels and to follow up. They don't know the cause of the clot, they just think that it is a fluke thing, most likely not related to the cancer treatments. They are checking for clotting disorders though. We won't get those results for days to weeks. So please keep saying prayers for our little hero.

Update on Jackson

Hi Everyone,

Wow! Life has been busy the last few months! Nothing too specific, just day to day, NORMAL, things. We have just been going to school, work, daycare, and doing whatever we need to on the weekends. The last few weeks have been especially busy because Jackson started T-Ball. He is on the same team as his cousin Gavin. They started out with no coach this year, so Warren and his brother Wayne stepped up and volunteered. That means that Megan and I are team moms by default! Just one more thing to add to the already crazy schedules that we maintain. So far it has been fun, other than a lack of organization by the league. The team had their first game on Saturday after opening ceremonies. Jackson maintained very well, although he did get pretty tired by the third inning.

We are headed up to UCSF on Wed. the 23rd. He has an endocrinology appointment at 3pm, and on Thursday the 24th he has an MRI at 7:30 am, neurology appointment at 11:30, and an oncology appointment at 2pm. That is gonna be a busy and tiring day, especially for him after having anesthesia. He is my little trooper though. All the appointments are in the same building, so no traveling thru the city. I am frustrated with the oncology dept. right now because they only scheduled the MRI for his brain, not brain and spine. I was never informed that this was the plan, and he hasn't even been off treatment for a year yet. When medulloblastoma reoccurs, it can show up in the spine also, and sometimes even before it shows up in the brain. It seems way too early to only scan the spine every 6 months vs. every 3 months like we have been doing. I have a call into his oncologist and I am waiting to hear back from her. If we had discussed this in office, I would have insisted on the spine scan also. I am frustrated! The scan anxiety is bad enough, let alone the fact that they may overlook something so early on. I don't want to wait 3 more months to wonder if he may or may not have something starting in his spine. I will post when I talk to his oncologist about all this. Otherwise, all is well, and I am interested in what endo will have to say. Jackson does well taking his meds for thyroid and his cortisol levels. I am wondering if they will start to look into growth hormone supplementation for him yet. May will be 1 year since he went off treatment, so probably they will supplement later.

So please say prayers for my little hero that he will have clean scans of his brain and SPINE! I hope you all enjoy the pictures of our T-Ball champ!

Jenise

MRI

Hi Everyone!

Just a quick note- Jackson's MRI results were fantastic! No signs of anything! Not even the radiation injury that has been showing up on the last few MRI's. His appointments in SF went well. We don't have to go back up for another 3 months! Neurology said we can start weaning him down off of the Topamax after she sees the final report on the MRI, just in case. Such great news as we go even further into the holidays! No worries for the next 3 months! Thanks to everyone for all of the support and prayers!

Jenise

MRI on Thursday

Hello Everyone!

Things have been moving in the right direction for Jackson lately. We just finished up his IEP (individualized education plan) at his school. He is getting the extra help he needs. He has an aid in his classroom with him for 30 minutes a morning. He goes to resource at 10:30 MTW, speech therapy on Thursday, and adaptive PE on Friday mornings. He goes to school until 11am MTWTH, and still 10:30 on Fridays. He is doing well so I hope that he gets caught up more by the spring.

Jackson started his thyroid and cortisol meds early November, so it has been a month already. His energy level is great. He is actually fighting me on naps now rather than putting himself down at noon! His mood swings have improved quite a bit also. It is so nice to finally get back the old Jackson that we knew prior to his diagnosis. Although he is still having some balance issues, overall, his coordination is getting better and he is gaining some endurance now due to his energy levels. The doctors will be checking his hormone levels again this week to make sure he is properly dosed. We went to CCS ( California Children's Services) on Friday for PT and OT therapy evaluations. We go back again this Friday and possibly once more next week. They will then meet him again for clinic in January where the team makes their recommendations for treatment. The occupational therapist said she is 99% positive he will qualify for services. If so, Jackson will most likely take a bus from his school to therapy. He is looking forward to that!

Now here is the big one this week. His MRI on Thursday the 9th. They will be doing his 3 month surveillance MRI of his brain and spine. As you all can imagine this is a stressful time for all of us. He is a year post surgery and 6 months post treatment. Please say a prayer for Jackson to have a clear scan so we can get through the holidays with nothing else weighing on our minds. Thank you!

Jenise

Lab Work

Hi All,

Just need to check in and update everyone on all the issues plaguing us these days. Jackson had some lab work done a couple weeks ago to check his thyroid and his cortisol levels. They both came back low. He is now taking Levothyroxin for his thyroid once a day and hydrocortisone for his cortisol levels twice a day. They said it will take a month for him to reach normal levels. It seems as though already, he has had more energy, and today I had to fight him to take a nap. Ok, we're ready, bring on the old Jackson that used to run circles around us. It is going to be so nice to see him get to be more like his old self. We are hoping the extra energy will help him with his balance also and with school.
Speaking of school, Jackson's IEP is scheduled for Tuesday. There they will give us all of his results for his testing that they have been working on. I am anxious to hear what they have to say. Report cards will be coming home soon. I am wondering what his teacher has to say. I am not very fond of her and I will be doing research on his teachers in the future. She seems nice enough with the kids, but she doesn't communicate well with me. I ask her alot how Jackson is doing, and she says ok. I am waiting to see what his testing shows, and to see if she actually will have some input at the IEP. Maybe actually get some feedback being that she is the one that spends the most time with him. Mrs. Rigali is the Resource Specialist that I am hoping will be spending time with him on a daily basis. She is wonderful. He is going to need extra help, it is just a matter of how much. Jackson's behavior reports for September and October were excellent. Not as much as one warning in the last two months. Way to go Jackson!! Just wish I could say the same for home! He spends alot of time tormenting his sisters!

Ok, so Jackson's next MRI is on December 9th at 10:30am with an oncology appointment to follow at 2pm for results. As you can imagine, I am already getting anxious. He did have two new spots of radiation injury show up in August whereas the last few we were keeping an eye on have nearly disappeared. I hope this is the case for December. No new radiation injury, and out with the old also. I am also trying to coordinate his Neurology appointment for that day or close by so that we don't have to make another trip. The neurology doc will be assessing his need to continue on the Topamax that was prescribed for seizures and migraines that happened when he got so sick in August. He hasn't had any issues since then, so I am hoping they will want to wean him off it so to lessen the number of pills he takes a day. Did I mention he is swallowing his hormone supplements? They are not large tablets at all, but they don't make a kid friendly version either. The thyroid pill, he has to take with water 30 minutes prior to eating. He amazes me every step of the way! Can everyone please start praying for Jackson's clear scan on the 9th? The prayer sent his way are always so appreciated. Thank you!

Jenise

Just a few pics of my 400+ pics

A hungry gator waiting for a hot dog.

Hayden feeding the tortoise.

Family pic at the character breakfast on Sunday.

Madison and Jack getting slimed!

At Universal Studios at the end of the day.

A picture is worth a thousand words.

Happy times.

Water slidin' at the Nick Resort.

Jackson's first sliming.

Jackson getting slimed. Not too sure about this.

Make A Wish Trip

Hello Everyone!

So much for blogging on a weekly basis :(. I am wondering when things will slow down a little bit. We have been on the go for the last two weeks. Saturday, October 16th, we kicked off the MAW trip with a night at the Santa Maria Speedway. Jackson loves the speedway, so MAW thought that would be a great place to to present us with Jackson's wish trip details. We flew out of LAX on Monday morning and arrived in Orlando at about 4:30 in the afternoon. The kids did well on the plane and we met Eric Estrada on our flight. From Orlando airport we went to the Nickelodeon Suites Resort. Tuesday, we spent the whole day at the hotel, where Jackson got slimed that afternoon. He wasn't so sure of all the commotion at first( he doesn't like to be the center of attention), but he enjoyed it afterward when he was covered in slimy green stuff. He even "shared some" with Warren. Wednesday, we had a one day pass to Disney World. We chose to go to Magic Kingdom. The kids, Warren, and I went on rides, met characters, and bought souvenirs. On Thursday and Friday, we had park hopper passes to Universal Studios Orlando and it's sister park, Islands of Adventure. We had a great time both days. Jackson is a roller coaster demon! He had a blast on just about everything we went on. Hayden, on the other hand, wasn't too sure about any of the rides I took her on. Saturday, we spent another day at the hotel, just enjoying their amenities. We hung out at the pool, went on water slides repeatedly, enjoyed poolside entertainment, evening shows, and also booked another private sliming, this time for Madison. Jackson decided this time that he wanted to join in the fun with her, so he was able to be slimed twice in one week. They had a blast getting slimed together. Sunday was checkout day and we had to check out by 11am. Our flight didn't leave until 6:50, so we spent the day at Gatorland. That was a lot of fun also. We saw tons of alligators and a few crocodiles. The kids held an alligator and took a picture. We also fed some of the gators with hot dogs from the "bait booth"and fed a 97 year old tortoise a carrot or two. We watched a gator wrestling show and ate some fried gator nuggets. It tastes like chicken, tough chicken! At about 4pm we headed over to the airport, turned in the rental car, and got ready to board our plane. We arrived at LAX at about 9pm and our private shuttle, Shining Star Shuttle, was waiting for us. They also drove us down to LAX on Monday. We finally made it home at about 1am. The kids handled the trip surprisingly well considering it was non stop and most days they didn't get naps. Jackson did extremely well considering his endurance is so low. Warren and I both took Monday off work, we should have taken another whole week! We were tired.

Jackson turned 6 years old on Tuesday the 26th. Another birthday for Jackson! A really important milestone for anyone who has had cancer. We didn't do much because we had had such a busy week. We will probably do a little something for him in a couple of weeks when Madison come back from her moms. So, that evening of Jackson's birthday we spent it driving up to Family House in San Francisco because of an endocrinology appointment that was pretty important. He had some labs done the week prior to our trip and some of the hormones came back low. Specifically thyroid and cortisol. He needed further testing done asap, and the clinic is only open on Wednesdays in SF. We had a local appointment mid November, but they didn't want him to wait that long. While in SF, he had an ACTH stimulation test done that is specific for checking the cortisol levels. That test took a couple of hours, partly because they had a hard time getting an IV started on him. He is such a trooper when it comes to the pokes. He doesn't like it at all obviously, but he tolerates it. After the test we went and visited his BFF in SF, Jaclyn, his old PT. Next, it was off to the Endo appointment, where he fell asleep on the exam table because he was just so tired. Of course they wanted more blood work and a bone age test, which is an xray of the hand. Thank goodness we left the IV in after his ACTH test, so they were able to draw from the IV and not poke him again. Then off to radiology on the third floor of the 400 building for the xray. All of his appointments were in the same building across the street from the hospital, so not alot of traveling. We are waiting on the results of the test that were done. It seems to be that they will be supplementing his thyroid at least, and possibly his cortisol. They wouldn't prescribe anything for thyroid until the cortisol test come back in order to get the dosage correct. I am hoping to hear from them on Monday.

We came home Wednesday evening after all of his test were complete. Thursday, his kinder class went to the Righetti High School pumpkin patch and picked out pumpkins. It was alot of fun. They had a bounce house, cookie decorating, face painting, tug of war, and Jackson's favorite, pumpkin bowling. The class walked from Alice Shaw, so I ended up carrying Jackson half way there and half way back. Friday, the 29th, we took cupcakes to Jackson's class to help celebrate his birthday, he enjoyed that. So here we are, on Halloween. Jackson is going to be a cockroach again and Hayden is going to be Abby Cadabby from Sesame Street. They are very excited for trick or treating. I will be posting some pictures from our trip here on the blog today also. I hope everyone enjoys! We sure did!

Jenie

Hello Everyone,

I am so sorry that it has been so long since I last posted. We are truly grateful for all of our faithful followers, so I apologize. Between getting back to school and work, computer problems, and lack of time, I haven't been able to sit and post.

Jackson has been making a slow transition back to school. He has only been going about and hour and a half a day. He just can't handle a full day yet, which is only 3 1/2 hours. We are working up to him going all day, so our hopes are that by the end of the year, he will be going the whole day. He is slowly but surely, doing more and more work in class each day, and we have been finishing his classwork at home. He is also tracing his letters more at home also, which is good for him because he doesn't write much at all. I think he lacks the confidence and also is a bit of a perfectionist when it comes to this stuff, so if it doesn't look the way he wants it to, he just gets frustrated. Jackson has finally been making some friends at school. So far, Tucker and Audrey are the ones he talks about. Tucker sits next to him in class and helps Jack sometimes when he needs it and he is also the one who walks with Jackson to the bathroom or the office if he needs to go for any reason. Jackson's behavior in class has been outstanding. His report came home last week for the month of September, and he has not even had as much as a warning any day.

I met with the school resource specialist, the district psychologist, speech therapist, and his teacher to discuss an assessment plan for Jackson. From this information they will gather from him, we will develop and IEP ( individualized education plan). This will aide Jackson with whatever help he may need, whether it is physical, emotional, or academic. The process takes about 60 days, so it will be a slow process, but that is great for Jackson's pace.

The rest of the family has been doing well. Madison is in 4th grade this year and is such a tween! Hayden is still a psychotic 3 year old that makes me laugh all the time. We are gearing up for Jackson's Make A Wish trip coming up on the 18th of this month. We are going to Orlando for a week. Jackson wants to get slimed and the Nickelodeon Hotel. This should be a great trip. We have no idea what they have in store for him and the family, we only know the dates we are going. It is definitely going to be a well needed vacation for our family. Jackson has been through so much, so this will be a great release for him. We will take lots of pictures and post here on the blog for all to see.

Health wise, Jackson has been doing well. No more issues since the last hospitalization. No seizures, headaches, fever, etc. He is taking Topamax to prevent migraines and seizures right now, but they will reevaluate him in November to see if he still needs to be on it. He has been battling a sinus issue lately, both he and Hayden. They went to the doctor on Friday and they both are on Amoxicillin which has definitely been helping. Snotty noses are almost gone. All in all, he has been doing great, each day getting stronger and stronger.

Thank you all again for caring so much. I will try to blog on a weekly basis. That is my goal. I don't want to leave anyone out of the loop!

Jenise

Jackson Is Goin' Home Today!!!

Hello Everyone,

We are leaving the hospital today. Jackson is doing well and his xrays came back normal. Warren is on his way right now to get us. We can't wait to get home! Thank you for all of the continued support.

Jenise

Jackon Is Recouperating

Hello Everyone,

Both today and yesterday, Jackson has not had any pain. His headaches have gone away, and he is getting back to his normal spunky self. He has been getting tired very easily, so we rest alot still. Yesterday, he went to the playroom in the morning and again in the evening with a nap and resting in between. Today he had an even busier morning. He went to the playroom in the morning, followed by a PT consult by his favorite PT Jaclyn. He also was observed by his old speech therapist, Jill, who he never liked to interact with. After that, when we got back to our room, the neurology team came by to visit and watch him walk. He was worn out after all of that. He took a great nap both days and today when he woke up, we played bingo from the room. They do bingo every Thursday here for all of the kids and they have some awesome prizes. Jackson has gotten Nerf guns, Lego's, remote controlled cars, and today he wanted a Play dough set. This evening we have been watching movies and hangin' out.

Back to the PT consult. I wanted to have Jackson evaluated and have some reports in my hand so that I have recommendations for therapy when I file an IEP for Jackson. Some of you may know what an IEP is and some may not. It is an individualized education plan. When I request an IEP, I am asking Jackson to be evaluated for any special needs services that may help him in his educational process. He qualifies for one just because of his neurological deficits. Once we get the ball rolling, he will be evaluated for therapies such as speech and occupational. They will also evaluate him for cognitive deficits and delays, which he has a high chance of having due to the high dose radiation therapy he received. I figure the more reports and recommendations I have for him, the more opportunities he will have through the district. I want him to feel comfortable and safe at school as well as have him being challenged by academics, but not overwhelmed. I want him to gain confidence and for him to succeed at whatever level is best for him. He already doesn't want to go back to school, so him transitioning back next week is probably going to be rough. His old speech therapist gave me some insight as to why he doesn't like being at school right now having to do with communication and it makes sense. Slowly but surely, I believe we are starting to see the affects of the radiation. They can manifest over the next five years. I want to stay on top of his education.

So the plan is to go home tomorrow. They want to do a full body xray because Jackson's blood counts are low. They said that him just fighting a virus can do that to him. When he had a fever, his white counts were elevated. The xray will just check for some "lesions" in the bone marrow. I understand the lesions may be infection related. I think they just want to rule something else out. Please pray for a clear xray tomorrow so we can go home and get back to life again. I am so sick of this hospital and having Jackson sick and stuck here. I just want him to have his health back. Lord knows he has been through enough!

Jenise

Update

August 29th

Hello Everyone,

The last 36 hours or so have been fairly eventful. They moved Jackson out of the PICU Friday night at about 10:30. We were in a regular room on the med surg floor called 6 Long. We were there until about 3pm yesterday. Then they moved us up to 7 Long, which is where Jackson has stayed for the majority of all his hospital stays because in is the hem onc floor. We had a nice quiet private room. At about 6:30pm yesterday, Jackson had been feeling better. He was talking, joking, watching TV, and he wanted me to order him spaghetti. He was quite and all of a sudden he let out these three strange yelps. We looked at him and asked him if he was ok and his head was going left and then he was silent. We tried to get him to respond to us and he wouldn't. I ran down the hall to the nurses station. Everyone came in, evaluated him, vitals, etc. He was having a seizure. This is the same thing that happened early Thursday morning after he had a medication called Compazine. They thought Thursday that he had a dystonic reaction to the med. Hindsight is 20/20, he had had a seizure and I think it was coincidental that he had had the med 20 minutes earlier. So, they sent him from 7 Long to the PICU for close monitoring. We have an isolation room now because they don't know what he has. They don't seem to think encephalitis, bacterial or viral. Neurologists are saying migraines and seizures, maybe brought on by a virus in his body. They don't know.


August 30th


We are now back in a regular room and out of the PICU. We still have no answers. Infectious disease doctors are stepping aside now because they do not believe that any of Jackson's issues are brain infections. He is in alot of pain. His headaches have worsened since yesterday morning. Tylenol and ibuprofen no longer help much. He is on morphine and the neurology team wants to try naproxen. They say is is more effective than Tylenol and ibuprofen, it lasts longer, and it penetrates the blood-brain barrier better. He will start with that tonight. For now, morphine helps, but it doesn't last long. They are still speaking with the neurosurgery team about his shunt but they don't want to tap into it for the risk of infection and they say it is very unlikely that it is infected since he hasn't had a fever in the last 36 to 48 hours. Needless to say, we are very frustrated. Jackson's pain isn't getting better and I am wondering if pressure is building slowly in his head and the scans he had were just to early to see it. Jackson began complaining of his head hurting and back hurting nearly two weeks before his tumor was diagnosed. Although it is not a tumor now, it could still be pressure building from fluid build up. We want to fix his problem, no matter what it may be, get him feeling better and go home!



Jenise

Ups and Downs

Hi Everyone,

Jackson has been having some ups and downs. First of all, his MRI result Thursday, came back with the last radiation injury spots disappearing and some new ones appearing. This is normal and to be expected with the amount of radiation that he had to his brain. Everything else was fairly normal. No signs of infection in his ventricles. No pressure from fluid. The only thing that they did notice was that the tubes leading up to his kidneys are larger than normal, but it could be from the fluids that he has been on. They are double checking it today with an ultrasound.

Yesterday was a good day for Jackson. He didn't have a fever, he was eating a bit, drinking, coloring, and playing with his PT, Jaclyn, when she came by for a visit. Last night he became very irritable, and couldn't get to sleep. We gave him some benadryl and that seemed to help, but he was still having some crying outbursts, so we gave him some Tylenol. About an hour and a half later, they moved him out of the PICU to his own room. When we moved him he screamed that his back was hurting, and we also found that his fever had returned. This morning started off with him feeling ok, but soon after him falling asleep, he began with the same disoriented, angry, painful outbursts. He seems very sensitive to light and sound.

The best the docs can come up with right now is that he is fighting some sort of viral infection in his brain. They said it could be the virus that we all had a week prior to him getting sick. If it is that, then he just has to ride out the illness. They have also mentioned that it could be a herpes related virus and in that case, he will have to go on antivirals to I assume shorten the duration. He has viral panels out right now, but that takes days or so to get results. Right now we are just trying to keep him comfortable. He is still on IV antibiotics even though his cultures are all coming back negative. We just wait I guess to hear, oh yes we found out what this is, and treat or not. Or, we have not found anything because there are thousands of viruses to test for and we may never know, but he is better now so you can go home.

On a better note, I have utilized our time up here to get some help with where to go with Jackson's education and how to get an IEP started for him. I have also got a referral for some more therapy for him because physically, he has seemed to reach a plateau. Jackson has an educational liaison and teacher here if he feels up to doing some kinder work. Her name is Gina Ditto and she has been very helpful with the IEP information along with my friend Kim, who has started a foundation called the Pediatric Brain Injury Foundation.http://pedsbif.org/ Everyone that has been involved in Jackson's care and journey has been so helpful and we are so very fortunate. Thank you everyone for following. I will post again if we get any more information soon.



Jenise

Jackson's Day

Hello Again,

Jackson's day was better today with regards to his fever, but he had a massive headache today which the neurology team are calling a migraine. He had some Tylenol throughout the night for his headache pain, but today it didn't help. They gave him some oxycodone today and that seemed to do the trick, but after the neurologist diagnosed a migraine, they said the opiate would help, but also cause a rebound headache. We decided to go with Compazine, which is used as an anti-nausea med but it also works well for migraines. He had a dose this afternoon and it has helped him alot. He is sleeping alot, but when he wakes up he is more alert and not complaining so much of his head. Poor Jackson has been through so much, and now he is experiencing a migraine. I have a history of migraine headaches, so they say it is genetic and something, possibly a virus that caused his fever and illness also caused a migraine. Hopefully he will not experience these on a regular basis.

Jackson is scheduled sometime tomorrow afternoon for his MRI. The neurology team was going to put in their own "two cents" about his MRI, so it sounds like there is something specific that they may want to check regarding the migraines. He has had no fever today, but he is still on the course of antibiotics. He has been drinking apple juice, but not really any appetite. I'm sure he is saving that for tomorrow, when he can't eat anything until after the MRI because of the anesthesia. That would be how Murphy's law works right?

Please say prayers for Jackson to have a clean scan tomorrow and for him to feel even better very soon. I will post again tomorrow evening after his scan and such.

Jenise

Back At UCSF

Hello Everyone,

I hate to report that Jackson was flown up to UCSF on Monday evening. Jackson started feeling yucky on Sunday evening, complaining of a headache and he had thrown up. He went to bed at about 7pm and when he woke up at 5:45 am, he had a fever of 102. I gave him ibuprofen and he went back to sleep. Knowing that he wasn't going to school that day, I let him sleep until it was time to take Madison to school at about 8:15. I planned on taking him to the doctor to get him checked out for an ear or sinus infection because he was having sinus troubles the week before. When I went to wake him and get him dressed, he was really lethargic, crying, and said his head was hurting really bad. He still had a fever even a couple hours after giving him the ibuprofen. This scenario seemed too similar to when he was originally diagnosed last year and he had the fluid pressure on his brain called hydrocephalus. I decided I was going to take him directly to the ER. We went at 9am and went back right away. They started with and IV, blood work, cultures and a CT scan to rule out any problems with his VP shunt in his head. The shunt is what helps his brain drain the fluid properly from his ventricles into his abdomen. I was worried that his shunt wasn't working properly. The CT scan showed that everything was fine with the shunt. They also did a chest x-ray to rule out pneumonia. His white counts were slightly elevated to indicate that he might be fighting an infection. This whole time he was really out of it and was sleeping alot, only to awake when they were poking him or doing some sort of exam. The whole time the ER doc was working with Jackson's oncologist, Dr. Banerjee from San Francisco. They even did a spinal tap to check for meningitis, because apparently, it is going around in Santa Maria. They had 5 or 6 cases just last week and there was another case down the hall from Jackson's room. They say the spinal was negative for meningitis, but the sample they took was really small. I hope the test was accurate. He has been on antibiotics since Monday night, and he seems to be getting a little better. He is drinking and has ate today, but still is feeling bad and has still has the fever. He has been more coherent when he is awake. With all of that said, they can only determine that he has some sort of infection,viral or bacterial. A week ago Saturday, Jackson and Hayden had a stomach bug that caused them to throw up and feel crummy. The doctors said that for Jackson, something like that could have settled in his brain, which I guess is common and most people's bodies just take care of it on their own. But Jackson, having been through everything that he has, they said the virus could have caused his brain to swell very slightly, and that could also cause the symptoms that he has had. They said in that case that it would resolve on its own.

So, right now, Jackson is on IV antibiotics every 12 hours. They are monitoring him very closely. The resident that was on last night just spoke with me. She said they were very worried about him last night because of the fever and his "altered state". I am glad that these doctors are so proactive about their patients and they don't mess around at all. Among the tests he has had here, they have also done an EKG, 2 EEGs which check for seizures, and they bumped his September 7th MRI up to Thursday. The MRI is much more sensitive than the CT scan, so they can see more, and also make sure the cancer is still far gone. I will post again as soon as I get any more information or it things change. Please keep saying prayers for Jackson. We hope this is just a bump in the road and that it will very soon be in the past. Thank you everyone for the continued support.

By the way, something kind of strange. Last year on August 23rd, Jackson was transported from Children's Hospital in Madera to UCSF. He made the trip again to UCSF, a year later on exactly the same date. Too weird.

Jenise

Jackson's First Week of School

Hello Everyone,

On Wednesday August 18th, Jackson started his first day of kindergarten. He did very well. The drop off went well although Hayden and I both left crying. Neither one of us wanted to leave! My tears were happy tears and Hayden's were sad because she wanted to find a desk to sit at also. She had even picked out a new backpack when Jackson picked out his. On his second day, I got a call about 15 minutes prior to class letting out because Jackson had fallen and bumped his head. He was okay, but traumatized. He couldn't tell me how he fell, so Friday morning I asked his teacher, Mrs. Ortiz what had happened. She said he was sitting next to her one minute and the next he was on the ground holding his head and crying. She thinks that he had fallen asleep at the picnic table. Poor guy, he has been really tired this last week. Friday morning he was really tired and emotional. He didn't want to go to school, he only wanted to go home. I had to drop him off and then get Madison to school in Nipomo by 8:50, so I didn't have much time to stay with him. I had to leave him sitting at the picnic table next to the playground where they play until it is time to line up. I had to leave him crying by himself. He watched over his shoulder as we drove away. It was so heartbreaking. I'm sure that it will get easier as time goes on. He was really tired and emotional when I picked him up on Friday also. His body is going to take time to be able to adjust and gain the endurance that he needs to be his best for 31/2 hours a day. His teacher said that this year may not be academic for him. It may only be him getting used to the classroom environment and being able to just be there. That is fine with us. We want him to succeed, but if it is at his own pace, then that is how it has to be.

Overall, Jackson has been doing well. He is getting a chub layer that is so cute on him. His hair is coming back fairly well. I did clean the sides up a bit with the clippers, so he has a little fade going on. He was very excited to do school shopping for the first time. We went and he helped pick out some pretty cool clothes. He also picked out his Toy Story backpack. I think we are going to have to get him a rolling backpack because he has a hard time with walking and carrying his backpack on his back. His balance is fairly unstable, especially when he is tired. His appetite is going strong and he has not needed any anti-nausea meds lately. We stopped the Zofran about 3 weeks ago. He doesn't have to take his antibiotic any more that he has been on since December. Whoo Hoo! He is med-free! We will be traveling to SF on September 7th for another MRI. It is hard to believe that it has been almost 3 months already. I am already having some "scanxiety" about the scan coming up. We have been able to kind of forget about everything the last couple of months and now we are back to reality. I guess this will be the cycle for the next two years although I am hoping it will get better as time goes on. They are also going to recheck his hormone levels.

With all that said, I would like to ask for lots of prayers for Jackson's scan and that his overall experience at school be a positive one. Every one's support and prayers have gotten us to where we are now, so as you can imagine, they are really important to us. We are always truly grateful.
I will keep everyone posted with his progress and scan results as they come.

Take care,
Jenise

A Year Ago Today

Hello Everyone,

I can hardly believe it has been a year ago today that this blog was started and Jackson endured his first tumor resection that nearly took his life. We are so blessed and thankful that he is here with us today. A year ago tonight, we were beside ourselves, in shock, terrified, and wondering what the next few hours, days, and weeks might bring our family. Jackson is truly a strong soul and he fought with everything he had. We are so very proud of him. Everything has turned out okay.

Jackson has been doing very well these days. He and his sisters have been keeping me so busy this summer, I haven't had much time to get anything done, including blogging. Jackson is finally getting some hair that is growing in. His eyebrows are finally coming back, and his eyelashes are thick. He has been needing his anti-nausea meds less and less lately. We are down to half a tablet daily and sometimes I forget to give it to him. Most days he does fine, but occasionally he will toss his cookies! He is getting himself geared up for kindergarten, and I am trying to think of what will happen with my hours at work when I return and he is in a half day at kindergarten. I'm sure everything will turn out okay and everything will fall into place as they always do.

Jackson's next MRI will be in September sometime, but we have yet to be given the date. He will start some neuropsycological testing sometime in the near future. This will help us determine where his possible learning deficits may surface. He will be seeing a pediatric opthamologist just to make sure everything is great with his eyes. He will soon see a pediatric endocrinologist also. I have been searching for one more locally than SF, but had no luck, so I asked his pediatrician for ideas. Apparently, Children's in Madera does an outreach clinic at Sierra Vista for the pediatric specialties that are not available here. There is an endocrinologist that comes over one Friday a month. They are supposed to get into contact with us for an appointment. Yay! Hopefully that works out for us.

Well, thank you all for checking in. Please keep Jackson in your prayers so that everything will still keep on going in his favor.

Jenise

SIGNIFICANT IMPROVEMENT FROM LAST MRI

Hello everyone!

We have good news about Jackson's MRI yesterday. This MRI shows significant improvement from the last MRI in May. The oncologist are now pretty confident that the spots that appeared on the MRI in March are in fact radiation injury. Thank God for all of the answered prayers. The last three months have been hell for us just wondering what these spots are. If they were cancer recurrence, then Jackson's prognosis would not be good. His oncologist wanted to give him the benefit of the doubt and wait to see what happens rather than jump to conclusions. So she did and thank goodness!

Jack's hearing test went well today. Still some loss in the high frequency ranges, but nothing that will affect day to day life. Tomorrow Jackson will have his port removed and some blood work done to begin checking his hormone levels. The high doses of radiation he had, most of the time, effect hormone production such as thyroid, cortisol, and growth hormones. They will be keeping a close eye on these things. All in all things are going well. From here on out, we will probably only have to make the SF trip every three months from now on. YAY! Thanks to everyone for all of the continued prayers and support!

Jenise

It Has Been A While!

Hello Everyone,

I am sorry it has been so long since the last post. Jackson is doing great. I am just trying now to get geared up for our trip to UCSF next week. Jackson will be there on the 15th, 16th, and the 17th for MRI, spinal tap, hearing test, and if all is well, then they will remove his medaport.

This last month has flown by, although it seems like already the last 10 months are a distant, bad memory. It sounds weird, but I think it is because the last 2-3 weeks we have lived a normal, non-chemo lifestyle. That is the longest period of time in the last 6-7 months that we didn't have to do something treatment related. I am dreading the SF trip next week because it will interrupt our non-treatment lives, but hopefully, it will be the last interruption for a while.

Jackson is doing great! It took him a while to re coop from this last chemo treatment. His blood counts dropped pretty low shortly after his outpatient clinic appointment in May, so he needed to go for a blood and platelet transfusion. He had that done on May 19th, and since then he has slowly re cooperated. He is now pretty much in full force. Jackson's appetite has been incredible lately, and he seems to be putting on some chub in the belly area! Ha Ha! He keeps himself busy everyday in the yard. He makes himself oatmeal every morning with my help. He has been running, playing, and in the last week we have been swimming. Jack doesn't swim well, but he putts around our neighbors pool in a floatie. We just put up our pool this weekend. He and Hayden can stand in it and reach the bottom so they just do alot of splashing. We have just been having a great time lately going to the park, doing yard work, coloring, and lots of other things. Jackson has been taking so much initiative lately by dressing himself, getting himself in and out of the shower, getting his own snacks, and doing chores and stuff with his dad. This is my before BT( brain tumor) Jack. It was amazing because after his last dose of chemo and when all of his blood draws and pokes were over, he just became his old self again. He still has some meltdowns and mood swings, but they seem to be getting better. I'm sure all of this has to do with just not being so run down from the drugs and getting over the effects of the chemo. His eyelashes started to grow back recently, but now they have fallen out again. I am hoping that by the end of August, his hair will be starting to come back for school. I registered him for Kindergarten this month. He will start around the third week in August at Alice Shaw Elementary here in Orcutt.

Jackson made his wish for Make-A-Wish in May also. His wish is to go to the Nickelodeon Hotel in Orlando and get slimed! They have been in contact with us a couple of times since then, so it sounds like they are doing their best to make it happen for him. We chose some dates late this summer and in September and October.

We are hoping to do a couple of fun things when we go to SF next week in between appointments. We heard from another family at Family House that the have some passes to do some fun things down at Pier 39, so we will probably go down there and of course there is also the mandatory zoo trip. Well anyways, thanks for following Jackson's Journey with us and please everyone pray for a great MRI next week and a clean spinal tap. I will post next week with the results of tests and hopefully some great excursions!

Jenise

Jackson's Final Cycle of Chemo

Hello Everyone!

We have great news! Jackson just completed his last inpatient stay for high dose chemotherapy on Monday. We thought, back in July, when this all began, that this day would never come. It seemed to drag on forever and that we would never get back to being a normal family. Now, after his counts come back up from this cycle, we will begin a new stage of normal for our lives. Jackson's new future will begin to unfold, day by day, month by month, and year by year. His battle is not over, and he will continue to have challenges arise as time goes on, but for now, chemo has ended, and soon, the frequent pokes and blood draws will come to an end also. Hopefully, they will be few and far between.

We are here at Family House in San Francisco, waiting for his clinic appointment that is scheduled for Friday. There, he will get one last dose of Vincristine, blood work, and probably a platelet transfusion. Unlike past cycles, Jackson's counts were at an all time low when he was admitted of Friday. He received his chemo, and by Monday morning, Jack was neutropenic, which means his white counts are extremely low. This is the first time the chemo has taken such a toll on his little body. Jackson usually becomes neutropenic somewhere around the 10th day in the chemo cycle. This time his counts were this low on the 3rd day. This also means that his little body will take longer to recoup after the end of this cycle. Hopefully we can keep him healthy and germ free during this time. If Jackson is neutropenic and he develops a fever, then he will have to be admitted to the hospital for treatment of a possible infection. When I stayed in the hospital with Jackson on Monday night, I said a prayer that this would be the last time we spent a night in the hospital because of this disease. Please God, answer my prayers!

So Jackson already has his follow ups scheduled for June. He as everything scheduled to be completed in one week. June 15th he will have an MRI to check his spots that they are assuming is radiation injury. He will have a clinic appointment that afternoon to review the MRI and to discuss Accutane. On the 16th, he has a post-chemo hearing test, and on the 17th, Jack is scheduled to have his medaport removed. This is his central line that they access under his skin to administer chemo. So we will spend probably the whole week up here in SF. I am praying that this will be the end of our week long stays away from the rest of the family.

The photo at the top of the post is a farewell-great job Jackson party that they gave Jack as he was leaving the hospital on Tuesday morning. He was of course shy about it. The nurses on 7Long at UCSF are absolutely wonderful. Jackson's physical therapist Jaclyn spent about an hour and a half with us in the hospital on Saturday evening after her shift was over. She is a wonderful person who Jackson has really bonded with over the course of his stays. She visited with us and played with Jack before the chemo got him down. Thank you Jaclyn for being so wonderful to my son. I will continue to keep everyone posted with Jackson's progress throughout this cycle of chemo and beyond. I want to thank everyone for all of the support and prayers that have gotten us so far in this journey. Jackson still has a long road ahead of him, but now life will be on our terms, for the most part!

Jenise

Hello,

Jackson had another MRI yesterday and the results are that the spots are stable. They have not worsened since the previous MRI in April. This is more information leading the docs to believe that this is radiation injury. So the plan is to scan again in 6 weeks this time and to possibly put Jackson on Acutane. Apparently Acutane has some anti cancer properties that they have been studying here. The study is specific to anaplastic medulloblastoma, which is what Jackson has. He didn't qualify for the study previously because of the lag between diagnosis and complete tumor resection. Thank you Dr. Magram!! (sarcasm) Jackson's oncologist is not for sure that she wants to put him on Acutane, but she is considering it due to the spots and not being able to for sure say 100% radiation injury. Of course we think this may be good for Jackson and it does make us feel good because we are still doing something o prevent the cancer from coming back. There are some side effects, but the benefit seems to outweigh the risks.

Jackson had another pre-chemo hearing test today. His hearing is stable with only loss to the high frequency ranges. This is good because he has no loss that will effect his everyday life. That also means that they don't have to reduce the dose of Cisplatin, which is his chemo. They do have to reduce his dose of Cytoxin, another chemo, due to his low blood counts. They do pre-chemo blood work and in the past 5 cycles, his numbers were ideal for starting chemo. This month, his red blood was low and his white counts are low. He is almost neutropenic, which means his ability to fight infection is low. This is why they are reducing the dose. His body is taking such a hit from all of the treatments that it is not bouncing back like it should. This worried me at first, because of course I want him to get his full doses to keep the cancer away, but his NP explained to me that this would put him at much more risk for infection following chemo. It may take even longer for his body to recover from the last cycle, putting him at even more risk. So, in his case, the risks outweigh the benefits. The dose reduction is only 25% so he will receive 75% of his normal dose.

We are so happy that this is his last chemo, but if he starts Acutane, we will still have to come up once a month for labs to check liver function and to meet with the doc. I think I might actually have to make the 4 hour trip monthly forever!!!! JK, but seriously? Just when I thought we were only going to have to make the trip every 3 months! Anyways, thanks for following Jackson's progress. We are so thankful for all the support!!!

Jenise

Hello Everyone,

Wow! How time flies! It seems like we just finished Jackson's 5th cycle, and now, this week he will begin his 6th and final dose of chemo! YAY!!! We head up to UCSF for another MRI on Thursday, then a hearing test and chemo on Friday. We will be in SF for a week. Hopefully chemo goes a little smoother than last time for Jacks sake. Please help us pray for Jackson's MRI to come back clear from cancer and no more radiation injury. We don't want it to progress any further. Warren will be joining us this time for Jackson's last dose. I told Warren that he gets pee patrol when he is there. They give Jack lots of hydration during chemo and they monitor all of his urine output for volume and also blood because the chemo can damage the bladder. So needless to say, I have nicknamed myself the "Urinal Jockey" for three days a month! Warren will be the urinal jockey for a couple of days!

I would like to update everyone on our friends TJ and Sophia. TJ is out of the hospital and is doing well. His parents and oncologists have decided to stop the high dose chemo that has made him so sick recently. They have decided to put him on a low dose at home type of chemo that he takes five days a month. Sophia had a wonderful result on her MRI. It came back completely clear. There had been a "spot" on the previous MRI that the doctors couldn't identify completely, but they did think that it was surgery related. Well, that "spot" is gone!

We are so grateful for every one's support and prayers for Jackson and also our friends that are fighting their own battles too. Please continue to pray for clean scans, good health, and minimal side effects for these children. The love, support, and prayers that we have received has helped our family in so many ways. We are truly blessed.

Jenise