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Friday, August 15, 2008 9:50 PM CDT
TUESDAY, AUG 19-He has had all 5 doses of antibiotic. The knots are still there. The antibiotic is supposed to still keep working in his system thru Saturday. We will see what happens. In the meantime I am cleaning, doing laundry, marking school supplies, keeping kids that are tired of each other from fighting etc. School starts ONE WEEK from today! :) He goes back to the doctor next Thursday (2 days after school starts).
After 2 doses of antibiotic, the lymph nodes have not started getting smaller yet. He only takes 5 doses but I believe it stays in his system for 10 days. I noticed tonight that the lymph node in his right arm pit has gotten CONSIDERABLY BIGGER since yesterday. I have also noticed a couple others that have shown up today. Still we wait.... Thankfully he has another week before he goes to school. Hopefully he will feel better by then!
For more explanation about Joey or any of the above things that are new, please see posts from the last week.
Martha
Sunday, August 10, 2008 4:18 PM CDT
THURSDAY, 5:47 PM- Well after taking 4 tubes of blood, it APPEARS to be an infection that is causing his swollen lymph nodes. One tube was to check for a specific infection and the other 3 to check his growth hormone levels. When I get the results from any of it I will update. He was put on a round of antibiotics. We go back in 2 weeks. If the lymph nodes are still swollen they will do a bone marrow biopsy. (where they stick a needle in the middle of his hip bone) HOPEFULLY the antibiotics will take care of it.
THURSDAY, 1:15 PM- We are leaving for the cancer clinic for the 2nd time in a week. Please pray we find out what is causing the swollen lymph nodes and that it is not anything serious!
MONDAY, 2:30 PM- Just a small addition to what I added yesterday. Joe had another swollen lymph node come up yesterday to what he already had last week at the doctor. I called the cancer clinic today and the nurse practitioner said to give it a couple more days and see how he is. If he is no better then I will have to take him back in at the end of the week for some testing. With his leukemia history, swollen lymph nodes that won't go down are not anything to mess around with. My back is still giving me problems unfortunately. I did have to work today, but Selina and Joey were with me and were a HUGE help! Selina is big enough to lift Emma up for me so I did not have to lift her at all. They also took turns chasing her so I did not have to do that either! :) I will update if anything else happens and I need to take Joey back in.
Hi! I thought maybe I should update since it has been awhile...
As you can see by looking at his page there have been a few changes. All the pictures were taken yesterday when we went bowing for Dan's 40th birthday.
Directly above the journal entry there are 2 new things. The picture is a prayer request. There is a lady that I have been made aware of that is pregnant with her 4th baby. They found out a couple weeks ago that the baby has some pretty serious heart problems. He has been doing some better, but is no where close to being out of the woods yet. He is not due to arrive until November and he and his mom will be watched very closely as long as she is pregnant and after he arrives.
Above that it tells about a walk that we will take place in that is September 6th at Six Flags. ALL the proceeds raised at the walk go to benefit Childhood Cancer research which is mostly done at St Judes. If you are interested in donating PLEASE do so at the link below. Childhood Cancer research will always be important because there are still way too many children dying from cancer! Joey and Samantha have both been very lucky at this point and have seem to have beaten their cancer, but there are ALOT of kids with cancer that end up dying! If you are interested in coming to the walk and then spending some time at Six Flags with us afterwards PLEASE let me know. We would LOVE to have you! Right now if you buy your tickets online, everyone only pays the kids price. There is a way that you can earn a free ticket, by doing some fundraising. All the details to that are at the link below.
On to Joey news...He had an appointment at the cancer clinic this past Thursday. His blood counts were good; however there were a couple things we need to watch or get checked on. He has several swollen lymph nodes that we are watching. She said they could be related to the illness he had had week before last. I have to watch them and if they do not go away soon or get bigger or more painful then we will have to go back. The other concerning thing is how small he is for his age. Yes all his medical issues work against his height, but he should still be growing and he basically isn't! He will be 11 in October and is the size of his age 7 and 8 year old friends.
I need to get him an appointment made with the Endocrinologist soon. He will also go thru some more testing when we go back there in December (if not sooner) In September, he also has an appointment at the hospital to get a test done on his hearing. He is frequently complaining he can't hear.
On Thursday of this week, he FINALLY goes in to get botox injections in his hamstrings related to his tight muscles from his cerebral palsy.
We are still busy getting the kids ready for school. So far 4 of them have been registered. (Jason goes on Tuesday). We have gotten most of the school supplies. We still have to finish up eye exams and get uniforms and backpacks. School starts 2 weeks from Tuesday (Aug 26)
I better go for now. I am having trouble with my back right now and need to lay back down. (It has taken me about 3 different sittings to finish this up) Please email me at the address below if you are interested in joining us on September 6. We would love to have you!
Martha
PS. Joey still really enjoys reading guestbook entries if you have a few minutes. :)
Monday, July 14, 2008 1:32 PM CDT
Thursday, 11:24 PM- Just wanted to update everyone on the kids. Jason ended up staying at camp. The dr said it was ok as long as they changed his bandage and he did not get it wet. He really wanted to stay. We talked to him last night and he was doing fine. His stitches come out on Monday. Dustin's legs are alot better. I am hoping to get him in to the doctor the same time Jason goes to get his stitches out. He still has the knot under his jaw. I think that about covers it for now. :)
Camp............
MOST people think of sports, swimming, friends and fun. My kids have all had some fun at camp, but there have also been some unpleasant things happen. Last Friday, Joey came home. He had a BLAST at his 2 camps. He went to Lion's Camp (camp put on by the Lion's Club for kids with physical disabilities) from June 29-July 4 and to Camp Sanguinity (camp he went to before put on by the hospital for kids with cancer...no he does not currently have cancer but i found out he was still welcome to go since they had room even tho he is off treatment) from July 6-11. He had alot of fun, but he came home TOTALLY worn out, hurting and he has a bad cold. So he has done alot of relaxing and watching tv the last several days.
And then...
On Saturday Dustin,Selina and Jarrett got home from camp. Dustin about halfway thru camp got into bull nettles. If you are not familiar with bull nettles it is like a poisonous cactus. He has a BRIGHT RED AND PAINFUL rash all the way around both legs from his ankles up to his mid calves. From the research I have done he could have flare ups with this for the next 6 weeks.
Jarrett had a sore back from being flipped over by a kid and he landed on his back (I assume the kid was trying to play with him). He seems some better today. Selina was good at camp, but got car sick on the way home driving thru all the hills and such. Selina,Dustin and Jarrett also left a considerable amount of their clothes AT CAMP.
Fast forward to today....
I got a phone call from the directors at a camp Jason is at this week. He had fallen and hit his head on a rock and they were going to take him to the ER to get stitches in his 2 inch gash that he had over one of his eyebrows. Last we heard he was finishing up getting his 8 stitches. We are still waiting to hear for sure whether we need to go get him. Dan talked to them last and the dr had said he did not think it was necessary for us to go get him. We will talk to them again later on. We are prepared to go get him if necessary. (It is about 3 1/2 hours away) Do you know what a helpless feeling it is for your child to be 3 1/2 hrs away and have to be taken by someone else to get stitches? This all kinda tends to make a parent wonder if it is worth it to send 5 kids to camp.
I think that about covers the camp excitement for now. I will update again later on when I hear from Jason and his camp directors and we decide what we are doing.
Martha
Saturday, June 28, 2008 2:08 AM CDT
The fun continues....We have finished Vacation Bible School and Spanish Camp (at the school) and tomorrow (I guess that would be later today) Jason goes to Dan's parents house until Wednesday. Joe goes to Lions Camp from Sunday-Friday evening. (Lion's Camp is a camp for kids with some type of physical disability...Joey fit several of the criteria) Thursday-Saturday we will all be at my parents house. A week from Sunday (July 6) the middle 3 go to Florida College camp and Joey will go to Camp Sanguinity (the camp they all went to a few years ago for kids with cancer and their siblings).
Please keep Dustin in your prayers. He has a swollen painful lymph node under his right jaw. The pediatrician was not real sure why, but put him on some antibiotics. If it is not TOTALLY clear on Tuesday then I have to take him back for some bloodwork to see if we can figure out what is going on.
I think that about covers it for now.
Martha
Friday, June 13, 2008 4:37 PM CDT
The fun continues.... While most kids get simple stuff like colds, sore throats and such, Joey gets stuff like leukemia, cerebral palsy and the latest...
A MOUTH INFECTION...not THROAT...he said alot of people can fight it off with just a little sore or 2 and may not even know they had it....NOT JOE...Joe has a white tongue with red spotches and the roof of his mouth is very irritated The dr said his mouth is probably very painful....Joey agreed...He has been saying that for days and not eating much. The good news is that no antibiotics were needed. He told me to let Joey swish a combination of Maalox and Benadryl around in his mouth every couple of hours and that should help the pain. He said it should get better in a few days. In the meantime, he also thought it wise to send us down to the lab to get a CBC (blood count) done. We should have the results back from that on Monday.
HOPEFULLY he will feel back to normal by Monday when our exciting summer gets going good. His next 4 weeks are Vacation Bible School, Spanish camp, Lions Club camp (camp for kids with physical disabilities) and Camp Sanguinity (the camp he went to before for kids that have cancer)
I should go for now. Most of my children seem to have ALOT of energy this afternoon! Please continue to keep Joey in your prayers that he may feel better very soon and his bloodwork may come back looking good!
Martha
Wednesday, June 11, 2008 6:56 PM CDT
Hello from the Fontenot hospital....Out of 5 kids....4 of them have SOMETHING.
#1 (Jason) is finally free of fever, but he has a rash and quite a few sores in his mouth
#2(Dustin)-Low grade temp (we will watch to see if he is getting what Joe and Jason have had)
#3(Selina)- IS TOTALLY FINE :) Which is a really good thing since today is her 13th birthday!
#4(Jarrett)-low grade temp
#5(Joe-the one who started all this)-still has low grade temp, mouth sores and hurts all over
I have missed the last 3 days of work (so far). I am not sure about tomorrow yet. I can't take any of the boys with me since they all have something that Emma does not really need. Selina could come only she has summer school. It has been a REALLY GOOD thing that I have been here the last 2 days. The short version of the problem is THE CROWLEY ISD SCHOOL TRANSPORTATION is having some MAJOR MAJOR ISSUES right now. (There is a lot more to that story that involves kids getting on wrong buses, kids getting dropped off at wrong stops and buses that are up to 45 min LATE) UNFORTUNATELY because of our work schedules Selina has to ride the bus to and from summer school. The transportation people will get tired of hearing from me and others if things don't change soon!
Hopefully I will get everyone well before next week when the craziness of summer starts. Next week is Vacation Bible School. If you live in the area and are interested in coming, just email me and I will give you the details.
Martha
Sunday, June 8, 2008 6:20 AM CDT
2:20 pm- Just wanted to let everyone know that things have calmed down for now. It took a 3 hour ER visit, a dose of motrin ,a bath, and a dose of tylenol to get his temp below 104. He had a another dose of advil about 11:30 and his temp is just low grade and he is taking a nap. I think I will go do that too! It appears he just has a virus of some kind. Conveniently, he already has a pediatrician appt tomorrow afternoon (to fill out camp paperwork) I took alot of pictures at Joey's cousins wedding yesterday that I will be posting later.
Joey woke up at 5:20 am today with a high fever. If it does not go down soon, I will take him in. Please keep him in your prayers.
Martha
Wednesday, May 21, 2008 4:53 PM CDT
And the fun continues....There never seems to be a DULL moment around here. I guess that is part of having 5 kids. :)
We are passing colds and sore throats around here right now. Joey and I are currently the ones sick. I thought he was better so I let him go to school today. He made it ok, but since he came home he has been coughing some and I just realized he had a low grade temp as well. I made it to work today, but will likely stay home tomorrow. I just hope Emma does not get sick. Joey was already staying home tomorrow since it is Field Day and that would be too hard on him.
I INTENDED to come home and rest this afternoon, but Jason had other plans for me. I was 15 min from getting off and Dan calls (Jason had called him) and one of the brackets on Jason's braces had broken. So after I got off I had to go straight to get him, meet the Elementary kids from the bus and then go take Jason for an unexpected orthodontist appointment.
I also found out today that Joey officially needs to see another specialist to add to his list. On June 11, Joey has his first appointment with a Pediatric Endocrinologist to check on his growth issues and small head.
I do not know much on the sensory issues that he was having yet. When I took him to OT on Saturday, his therapist had me fill out a LONG questionaire. She is supposed to score it and get back to me.
Our summer schedule is RAPIDLY filling up. The kids all have a very full summer. So far Joey has Spanish camp, Vacation Bible School, swimming lessons and maybe an art camp.....Add that to his various therapies and doctor appointments. :) He won't be bored!
I added 4 new pics today. These were all taken on May 9 when Joey came to work with me. As you can tell Joey and Emma have a definite bond! She is normally very attached to me all day, but when Joey is around she follows him around! LOL
I better go for now. It is time to fix dinner. If you have a minute or 2, please sign Joey's guestbook to let him know you came by. He still enjoys reading them! Thanks.
Martha
Monday, May 12, 2008 6:35 PM CDT
Hi! Sorry for the delay in updating! I have been trying to get the computer for awhile. Life around the Fontenot house seems to always be busy!
I had a nice Mother's Day weekend! On Saturday we used our Six Flags season passes (some of us for the first time this season) Everyone had a good time! We were smart this time and took Joey's wheelchair which he rode in quite a bit of the time between riding rides. Most every other time that we have been to Six Flags he has majorly overdone the walking and usually ends up HURTING BAD for several days afterwards. Six Flags has a special deal for their guests with disabilities. You sign up on a list and then carry a book around to each thing you want to ride. The ride operator will sign the back of the book with a time you can come back and not have to wait in line. He is allowed to have 5 people with him when he rides. Most rides he has to enter thru the ride exit. (The exits are usually more wheelchair accessible, but it varies from ride to ride) The standing and/or walking for long periods of time is VERY hard on him! On Sunday afternoon after church, my family took me to eat at Pappasitos. It was VERY VERY GOOD and somehow we only had to wait for 15 min!
Joey is doing ok. The big positive is since the weather is warmer, he does not seem to be having as much trouble getting sick. The muscles in the back of his legs (hamstrings and calves) are giving him alot of trouble. Last week his physical therapist suggested that I contact the neurologist about getting botox injections again. Well I did, but unfortunately they could not get him on the schedule for botox until the middle of AUGUST. So for the time being, we just continue doing what we are doing (going to therapies, doing his exercises and taking his muscle relaxer)
Last Friday, he had an appointment with his allergist. He has had some trouble lately with his eyes swelling. She feels like it is just because everything he is allergic to outside is REALLY REALLY BAD right now. She added eye drops for him to have before bed each night for the next month. Once the hot summer is here she said it should get better for him. And then.... She asked me if any of his doctors had made a comment about his size. Even tho he has several things working against him on size (cerebral palsy, going thru cancer treatment for 2 1/2 years, his birthmom being small and him being a preemie) he should still be growing some. MOST kids grow about 5 centimeters in a year. In the last year, Joey has grown less than half of ONE centimeter. She feels he should be growing more than that. She is contacting the nurse practitioner at the cancer clinic (that sees Joey the most) to get her opinion. On a growth chart, Joey used to be in about the 10th percental in height and weight. He is now not even on the chart! :( She is also concerned about Joey's head size being smaller than it should be compared to other kids his age. This is called "microcephaly". If you will look at the pictures on the photo page of Joey and his 2 friends. Both of his friends are average size 7 year olds and he is about the same size they are and the both have bigger heads than he does. The allergist is concerned that Joey's not growing could indicate a thyroid problem or low hormone levels. She is supposed to call me this week sometime after she confers with his other doctor.
He is currently having some sensory issues that are a little concerning. If they continue, he will have to go back to the neurologist soon. In the meantime, I am just supposed to watch him. His occupational therapist gave me some ideas on it today and we will discuss it more on Saturday when he goes to occupational therapy.
We were able to FINALLY get some services for him at school. He is officially on a "504". Most of what we included was stuff like shortening assignments if he has grasped the concept, allowing him to TYPE any assignment that has more than 5 sentences for him to write, more time to complete assignments, oral test administration if needed, teacher provides notes for him if they are very long,reduce paper and pencil tasks, sitting near the teacher to minimize distractions and the ability to sit out of any physical activity if he is experiencing any pain. This can be adjusted at any time if it is necessary. There are a couple other things that will be added if he does not pass his math TAKS test that he took a couple weeks ago.
The other 4 kids are all doing fine. Jason got his top braces put on today.
The kids are all looking forward to summer. We have some fun things planned. Most of them will go to FC camp in July. Joey,Selina and Jarrett all brought home a paper today about a camp to learn to speak Spanish. Hopefully they will be able to go to that. We also have Six Flags season passes again this year!
I have alot of new pictures that I have taken lately so check back frequently to see new pictures.
Martha
Friday, March 14, 2008 5:49 PM CDT
Hi! The time has come again to get ready for our annual Relay For Life event that raises money for the American Cancer Society. Please consider joining us or donating to this very worthwhile cause. As long as there are still people losing their lives and having to fight this horrible disease, research is still greatly needed! They have alot of really fun activities planned for the Relay....(bounce house, face painting and much much more) If you think you might be interested in coming just email me below and I can give you more information on what goes on) All donations are tax deductible! No amount is too small! All the pictures on Joey's site are from the walk last year. :)
We have a very busy few weeks ahead between doctor appointments (see above) and other events. Besides the Relay on April 4, we also have Challenge Air and Six Flags coming up on March 29. As well as a gospel meeting at church the week of March 30-April 2. We were supposed to have gone to a family camp this weekend, but had to cancel because of Joey being sick.
Joey has had a rough time lately healthwise. The last 6 weeks he has not had any full weeks of school. He has missed atleast 1 day each week. This week he missed all 5 home with bronchitis. With the medicines the dr gave him on Wednesday he seems to finally be making progress feeling better. I just hope it lasts! He is now up to 16 absences and he is only supposed to have 15 for the year and there are 2 six weeks left.
He has a couple tests next week and several appointments in the next few weeks for various doctors and therapies.
We are dealing with issues at the school. Even despite his medical background and current medical issues they are still refusing him the services we were requesting.
Next week is Spring Break and the kids are all thrilled about that! The weather went from snowing twice last week to very warm temperatures this week. Today it is in the upper 80s.
I should go for now. I will update again soon! Please email or call me if you have any questions at all about the walk!
Martha
Tuesday, January 22, 2008 8:46 AM CST
Hi! I thought this might be a good time to update since I unexpectedly have the day off from working today (Emma is sick). The kids are all home enjoying their few days off. (Yesterday was a holiday and today and tomorrow are teacher work days)
Joey continues to have headaches. His medicine was adjusted again last week and yet he still continues to have problems. This has lasted way too long, so we are pushing for them to do the test to check the pressures in his spinal fluid. (which is what the neurologist told me he was going to do in NOVEMBER) I am not sure why he keeps putting it off. It did not settle well with me last week when I called and the drs response was to just up his medicine dose instead of checking what very well could be a problem. (It is not unusual for kids with cerebral palsy to have increased pressure in their spinal fluid) I know Joey is getting tired of having so many headaches. There are alot of normal activities that Joey can not do because it will bring on a bad headache. That is no way for a 10 year old to have to live.
On a positive note, he is finally able to start occupational therapy either this Saturday or Feb.9. He will go twice a month for an hour each time. He has been on a very long list waiting to get in.
Last week, I took all the paperwork from his physical and occupational therapy testing to the school. This will help him get the services he needs at school. We are trying to get him a little computer type thing he can use in the classroom to help cut down on the amount of writing he has to do. We may also have to adjust some things for when he takes his math TAKS test in April since it is mostly word problems. Joey does ok in math if you just give him a regular problem. The chemo that he got injected in his spine off and on for 2 1/2 years causes memory and processing type problems. It mainly effects him in being able to remember math facts and in word problems. (being able to break the problem down and figure out what to do with it) The counselor is going to take the paperwork in front of their committee next Wednesday and then she will get back to me with their recommendations.
I should go for now. There are some prayer requests that I want to mention also but need to check with the parents of the kids for permission. Please check back for those.
Martha
Sunday, January 13, 2008 2:21 PM CST
Hi everyone! We have been back home for 2 weeks and getting back into the swing of a normal routine...school, homework,work etc. We have all been fighting bad colds for the last couple weeks.
After we got back we got a family membership to the YMCA. We are all enjoying that. We just have to watch Joey to make sure he does not overdo it Because of his CP his muscles can not take what most other peoples muscles can take. They have an exercise class at the Y that is done in the water. He and I have done that twice so far. It is actually more of a workout than I would have expected. I think once his muscles get used to the intensity of it and the length, it will help him.
His physical therapist suggested limiting his "workout" to about 30 min and see how he does. Sometime soon he is supposed to start occupational therapy, but he was on a long waiting list so we will see when they call us. His therapists (physical and the occupational therapist that tested him) also want me to check into Hippotherapy (horseback riding therapy)
He is still having trouble with headaches. They are not quite as frequent as they were since he started the medicine, but anytime he lays down flat or jumps it will automatically bring on a bad headache.
He got measured last week for a new pair of day braces. We will pick those up at the end of the month.
As of now he does not have any doctor appointments until next month and several in March.
We had a neat experience last week. There is a lady and her 3 kids that we have known from the cancer clinic since the beginning of Joey's treatment (Sept 2002). We had spent MANY MANY HOURS in the clinic at the same time talking. At some point we had exchanged websites. Last week she updated their page and it turns out they go to one of the other Church of Christ's here in Fort Worth. It was really neat that we had talked for so long, but that had never come up. We have since been over there to visit! It was nice to see her and her kids again! :)They leave this week for California. A couple of the kids have a special treatment that is only offered out there. One of the kids will have to be hospitalized for it. Please keep them in your prayers while they travel that everything will go well!
I think that about covers the excitement around here. Hopefully I can get back into updating occasionally the next couple of months before things get crazy again in March.
Martha
Wednesday, December 26, 2007 11:41 PM CST
Wow it looks like an update is long overdue! I did not realize it had been so long!
We are all fine. We are currently in Colorado at my parents house. We came this last Saturday and will return to Fort Worth this coming Saturday. The kids are all having a good time with their grandparents, aunt, uncle and cousins. The weather has been pretty cold all week. In fact it is supposed to snow all day tomorrow. We have had to limit Joey's time outside since he has a bad cold! I hope he is able to get over his cold enough by Friday to be able to play outside some!
I have taken alot of pictures in the last week, but I can not update the pictures until we get back home. I hope everyone had a Merry Christmas!
Martha
Thursday, November 15, 2007 10:39 PM CST
SAMANTHA'S OFF TREATMENT PARTY- SATURDAY, NOVEMBER 17 AT 2 PM...
If you are interested in joining us, please email me at the address at the bottom of the page.
On to Joey....Once again, Joey will miss ANOTHER day of school tomorrow. He has a REALLY bad cold and likely has pink eye as well. He looks and sounds terrible! And add his headaches to that and he is definitely not a happy 10 year old boy! We are not really making any progress with his headaches. This morning he was also complaining that his eyes were hurting bad. Please pray his cold does not go into his lungs like it did last time and make his asthma flare up! On a positive note, he went to PT today and the botox injections that he got last week did him ALOT of good! She was very pleased! His muscles were alot less tight than they had been!
I need to run for now. I will update again soon.
Martha
Friday, November 9, 2007 2:29 PM CST
SATURDAY 9:45 AM- I made a mistake on Sam's off treatment party. It is NEXT SATURDAY, November 17 at 2 pm! If you are interested in coming for pizza, cake and pony rides, please email me at the address below. The party is in Flower Mound, where she lives, at her grandparents house.
Well I have good news and bad news. It does not appear the headaches are cancer related! The MRI was clear. The bad news is we still do not know what is causing the problem. Yesterday I talked to the neurologist about it. He suggested keeping with what we are doing for now to give the med he started a week ago time to help. In the next week or 2 if they are not pretty much totally gone, Dr. Marks is going to do another spinal tap on him to check the pressures in his spinal fluid. If we have to do this, he will lay down for an hour first to let the pressures build up and then the spinal tap will be done laying down instead of sitting up. The way the oncologist did it was sufficient to check for leukemia cells, but not to check and be sure his spinal fluid is not building up causing too much pressure and therefore the headaches.
He had his botox injections yesterday. He got 5 in each leg. This is just his hamstring muscles that were done yesterday.
Oh yeah! To anyone who has been following Samantha's progress throughout her treatment....Her OFF TREATMENT PARTY has FINALLY been scheduled for December 17 at 2 PM. She will be receiving her horse from Make a Wish at that time! If anyone is interested in going, please let me know and I can get you an invitation. There will be pizza and horse rides for the kids.
I should go for now. Kids will be home from school soon!
Martha
Monday, November 5, 2007 0:00 AM CST
Just to let everyone know....In 6 hours I leave to take Joey to get his brain MRI at the hospital. He will be sedated for this. We hope to be home by lunchtime! Please pray we get some answers for his headaches. He also continues to have quite a bit of trouble with his asthma.
I will update tomorrow evening or Tuesday (hopefully) with the results of his MRI.
Martha
Wednesday, October 31, 2007 11:28 PM CDT
Happy Halloween! I don't know about everyone else, but we have WAY TOO MUCH candy at our house!( between what we had bought to pass out,what they got trick or treating before church and what they got from various people at church)
Anyway this has been a relatively BORING week in Joey's life. Since Friday he has had a spinal tap at the cancer clinic, spent 3 days with a 101 temp and bad cold and then last night his asthma started REALLY REALLY acting up! He almost earned himself a little ER trip because of it! This is in ADDITION to his normal aches and pains and his headaches that he has had for over a month now. OH and then his back hurt him all weekend also because of the spinal tap. But other than that it has been a boring week! LOL HOPEFULLY he will make it to school tomorrow and Friday both and be able to stay all day. In the last week he has also missed 4 days of school and gotten picked up early 2 more days (atleast he was counted present those days) Next week, he will miss all day Monday because of his MRI (he will be sedated) and Thursday I will have to pick him up early to take him to the neurologist to get his botox injections. HOPEFULLY he has no more sick days in the meantime! His teacher called yesterday to check on him and said they missed him, but that his grades are still really good! I am sure he will bring home a good PILE of make up work from all his missed school.
I think that about covers the news for now. The other kids have all had colds in the last week also. Everyone seems to be on the mend. No one else had fevers or breathing problems because of it.
Please continue to keep Joey in your prayers that we may find out what is going on with his headaches and that his other current health problems get better! Thanks! He also still enjoys reading his guestbook! He REALLY LOVED all the guestbook entries that he got for his birthday!
Martha
Wednesday, October 24, 2007 4:06 PM CDT
Saturday,8:18 AM- Thought you would be interested to know about your day yesterday. He ended up having his spinal tap yesterday (dr decided he did not want to wait) The REALLY GREAT news is Joey is still LEUKEMIA FREE. The worry with bad headaches like that is a possible isolated relapse in the central nervous system! Thankfully there are NO signs of leukemia! :) The dr still really wants him to have his MRI done of his brain a week from Monday to MAKE SURE the headaches are not cancer related! The oncologist is planning to talk to his neurologist to see if they can figure out what is causing these headaches. We will see the neurologist on Thursday, November 8 for Botox injections in his legs and to talk about the headaches. He did REALLY good yesterday for his spinal. He was NOT sedated since he had an afternoon appointment, but he sat really still! Did not move a muscle! We were very proud of him! I have NEVER seen him do that well for a spinal tap! In fact the 2 nurses and the dr both said they had never seen a child do so well for a spinal tap before. But unfortunately now his back is REALLY REALLY HURTING! He walks all hunched over and will not hardly move! (this is typical. He always hurts for a couple days after! But it was necessary to do the procedure to MAKE SURE he had not relapsed in his spinal fluid) Even as long as it had been since he had had one done he still remembered that after he was done he got to pick a new toy out of the treasure box. :) On the positive note we have figured something out on his headaches....We knew that anytime he laid flat (even with a pillow) he would wake up in alot of pain. The last 2 nights he has slept propped up in the recliner. Both yesterday and today he has woken up with minimal headaches. I did not get a chance yesterday, but I do plan to ask the doctor about this. Will call the nurse practitioner on Monday. I think that about covers what is going on here! :) Keep praying we find out the source of these headaches and it is something that can easily be treated!
Thursday, 2:31 PM- His Brain MRI and his spinal tap will be done on Monday,November 5. We have to be at the hospital at 7:30 am.
Thursday, 10:37 AM- First thing this morning I heard back from the nurse practitioner at the cancer clinic. They are wanting him to have a Brain MRI and also a spinal tap done ASAP. The scheduling people are supposed to be calling me when they get it worked out! I will add a small update when I find out.
Please keep Joey in your prayers! He has been having almost continual headaches for about the last 4 weeks. We have ruled out the easy things (blocked sinus passages and eyes) as possible causes. The next step is to get him examined good by his neurologist (who sees him for his cerebral palsy) and also his cancer doctor. Please pray that we find out the source of the headaches and that it is something easy to treat as opposed to a leukemia relapse.
We have been enjoying nice Fall weather here the last few days. We finally had to bring out our jackets. :)
Enjoy the pictures that were taken this weekend when Joey had his birthday slumber party. :)
Martha
Saturday, October 13, 2007 11:25 AM CDT
I want to wish a very Happy Birthday to Joey. Tomorrow, October 14, he will be 10 years old! He has been through alot for his age, but always comes out on top! He will always be a survivor! Please sign his guestbook if you get a few minutes.
I updated his appointment list above. I will have more to add later in the week after we go to the pediatrician. He was supposed to have his friends over this weekend, but he was not feeling well so we are doing it next weekend instead.
Martha
Sunday, September 30, 2007 3:45 PM CDT
WEDNESDAY, 5:33 PM- I should have been a doctor! (considering I have 5 kids-and one with a complex medical history) I took Joey to the pediatrician this afternoon and he comfirmed what I already knew. Joey has strep throat! As of tonight (when the pharmacy is finally done with his prescription) he will be on 10 days worth of antibiotics. We will then go back to have him checked again to make sure it is gone....considering his past with strep. No mention of tonsil removal today , but I have a feeling if this happens too many times this winter, he will need to get his tonsils out. The doctor walked in and asked me what was wrong. I told him "fever and sore throat." His response BEFORE HE LOOKED IN JOEY'S MOUTH , "Oh no! He probably has strep again!" The test came back with a strong positive.
TUESDAY, 8:03 PM-One of these days I will learn not to brag about my kids being healthy. I have told several people recently about the fact that Joey had been one of my healthiest children since school started. Tonight he has fever and a bad sore throat so off to the dr tomorrow. Considering his history with strep that is my guess. The last time he had strep the dr was threatening to take out his tonsils. Hopefully he won't suggest that this time since it has been awhile since he had it (6 mo probably).
He went to physical therapy yesterday. All his hamstring muscles were really tight as well as the muscles in his left ankle. It looks like we are headed for some more botox injections soon. Hopefully will hear back from the doctor tomorrow. Also ,his occupational therapist and his physical therapist are wanting him to go to hippotherapy (horses). He has a tendency to overuse his good muscles so he won't have to use his weak muscles. (this is very common for spastic diplegia cerebral palsy) We are working on hopefully getting his weak muscles stronger so he won't hurt so much all the time. I will update with a small update tomorrow after we go to the dr.
On Sunday, October 14, (Joey's 10th birthday) we are participating in the Light the Night walk in Fort Worth to raise money for the Leukemia and Lymphoma Society. These walks are set up to raise money for much needed research. At this point, Joey and Samantha are both leukemia survivors, but I can give you a long list of people who have died from the very same illness. Leukemia and Lymphoma are both considered to be blood cancers. As long as there are people still dying from these diseases then research is still greatly needed! If you have never participated in a Light the Night walk, I strongly encourage you to participate. It does not cost anything to sign up and you would not regret going. It is a very positive experience to see everyone gathered together to raise money for the same cause! There are alot of family activities going on! Bring the whole family! Please consider joining us at 7 pm on October 14 to help raise money for the Leukemia and Lymphoma Society. The walk itself does not last that long and you don't have to be in the best physical shape to participate (obviously Dan and I both do it :) ) If you can't join us for the walk, please consider donating to this great cause at the link below. Every little bit helps in finding a cure! ($1,$5, $10 etc) If you want to donate, but don't have a credit card, I can take cash and check donations (made out to the Leukemia and Lymphoma Society). All donations are tax deductable. Thank you so much for any help that you can give! Please also look at the video above. This video was made in honor of Childhood Cancer Awareness month which was in September. It gives alot of statistics about childhood cancer.
Joey is doing well. So far repeating 3rd grade has been a very positive experience for him! His grades are EXCELLENT and he has ALOT of friends! He is very happy and having a great year so far! We are in the process of getting some accomodations made for him at school. He has alot of trouble with his hands when he writes alot. His teacher has started letting him type his reading and spelling homework. We are currently waiting on the occupational therapists evaluation. Once we receive it and I take it to the school that should help in getting him an Alphasmart (keyboard he can use in the classroom so he won't have to do so much writing) The therapist called me last week to tell me about what she had found in her evaluation. There were several areas where his fine motor skills were quite a bit below where they should be for his age, due to his cerebral palsy. One area was the strength of his hands. For the test that she did, a score of 39 would be considered on target for his age. His score on that test was only 20. She also noticed, when doing the evaluation, that he uses alot of other muscles to compensate for the weak muscles. (which is very very common for kids with cerebral palsy) For instance, just the simple task of writing causes Joey to tense up all the muscles in his hand, all the way up his arm and through his shoulders. The occupational therapist also found quite a few areas where he is lacking in his gross motor skills (bigger muscles that help him to walk, run etc). Starting tomorrow, the physical therapist will start to work on these areas. Another accomodation we have put into place at school is, when Joey's legs are hurting him, he is allowed to sit and draw (as opposed to just sit making it appear he is in trouble). He has taken up 2 notebooks (one for PE and the other for recess) that he will keep at school to use as he needs them. He also has advil at school in the nurses office to take if he needs it.
Be sure to look at the new pictures. He had another Challenge Air day last weekend. He was able to take his best friend Ethan up with him in the plane. Everyone had a great time! I will change the pictures out again in a few days.
I need to sign off for now. I will update again as things change.
Martha
Friday, September 14, 2007 0:22 AM CDT
Hi! I am so sorry it has taken me so long to update! Everything is going good!
Joey had a clinic appointment today. His counts were TERRIFIC. We got back the results from the Echocardiogram that he had done last week. Everything was normal! He does not have to go back to the cancer clinic until DECEMBER.
We are now 3 weeks into the school year and so far everything is going good for everyone. Joey is having ALOT of trouble with his hands, especially when he writes alot. (This is related to the Spastic Diplegia Cerebral Palsy) We have a meeting for him on Monday at school to discuss various accomadations that can be made for him. We had an occupational therapist evaluate his fine motor skills and he showed some definite weaknesses. Her recommendation was to let him use an AlphaSmart at school. This is a keyboard that he can do alot of his work on so he won't have to do as much writing. We will discuss that more on Monday at the meeting. Between the muscle relaxers and the water therapy, his legs seem to be doing some better.
I want to explain a little bit about the 2 things above the journal entry. The movie was made in honor of Childhood Cancer month which is in September. All of the kids in the video are currently taking leukemia treatmens or have at some point. PLEASE take a few minutes of your time to watch it.
Also in honor of Childhood Cancer month, Chili's donates ALL of their proceeds from September 24 from ALL their restraunts all over the US to St Judes for Childhood Cancer research. Please consider going to Chili's on September 24!
Above the movie, it talks about Light the Night. Sunday evening, October 14, which is Joey's 10th birthday, we will be participating in the Light the Night walk here in Fort Worth. Please consider joining us after church on Sunday evening to walk with us. The walk itself just lasts a little while around 7, but there are alot of family activities going on for a couple hours before that (bounce houses and such). It does not cost anything to attend and you won't regret it! If you aren't able to attend with us, please consider donating to the link below. Thank you so much!
You have probably noticed all the pictures that I posted from Joey from when he was on treatment. This is to honor Childhood Cancer month. I know hearing about kids with cancer is not pleasant, but watch the video and see just a VERY VERY SMALL portion of kids that have to live with the diagnosis along with their whole families.
If you have any questions at all about anything I have mentioned, please feel free to ask.
Martha
Sunday, August 26, 2007 11:04 PM CDT
School starts in 8 hours and 39 minutes. :) We went to "meet the teacher" on Friday night and they all met their teachers. Joey is repeating 3rd, but will have a different teacher this year. Jarrett and Selina will be in 5th, Dustin in 6th and Jason in 8th. Everyone seems really excited!
The pictures that are on his page now were taken at his aquatic therapy class yesterday. For those that don't know the guy in the pictures with Joey is my husband Dan. Since it is a therapy for kids with physical needs a parent has to be in the water with him at all times. He has been 2 Saturday's now and he really likes it. His swimming skills are really coming along! The biggest benefit of all is it really seems to be helping the amount of pain that he has in his legs ALOT!
We have the week off from doctors appointments.
The first 2 weeks of my nanny job went FANTASTIC! Emma Jane is such a good baby! The kids really like her as well and I know she will miss that they won't be coming with me as much since school is starting.
OH I almost forgot! Joey's best friend Ethan has officially moved back to Fort Worth! Both boys are THRILLED and act like they have not been apart for the last 2 years. They decided Wednesday night in Bible class that they were brothers. :)
On Sat, Sept 15, Joey will participate in Challenge Air (www.challengeair.com) again and Ethan will get to go up in the plane with him. Dan or I one will go up with him, the pilot and Ethan as well.
I will update again in a few days.
Martha
Wednesday, August 15, 2007 8:19 PM CDT
SATURDAY,Aug 18,2007- Joey went to aquatic therapy for the first time today! He LOVED it and did REALLY well! I really think it will help build his endurance as well as helping the amount of pain he has in his legs.
Hi! I hope everyone was able to get into Joey's site ok now that it is password protected. Please let me know if there is ever a problem getting in after you put his password in.
We have been staying pretty busy since I updated last. Samantha was here visiting last week and we went to the zoo and Six Flags. I have started a new job. I am the nanny for a 7 mo old girl named Emma Jane. Her mom is a teacher and I think it is going to work out really well. I go to work at 8 every day and on Monday's I get off at 3:30 and Tu-Fri I get off at 2. Until school starts, on the 27th, Joey and Selina have been coming with me every day. I took some pictures yesterday of Joey and Emma Jane. She really likes the kids (especially Joey) and they really like her too! :) I will post those pictures in a few days.
After much consideration, we have decided to let Joey repeat the 3rd grade. Last year he really struggled in especially math for most of the year. This is likely due to the chemo that he received. He could still decline for about 4 1/2 more years, but we are hoping between the help he is getting and the fact that he is going to repeat the 3rd grade it should help him alot. Joey is REALLY happy about repeating 3rd grade. This is what he wanted and he has NO reservations about staying back at all!
I have also found a neat place where we can take Joey for aquatic (water) therapy. He will start this Saturday at 11:30. He is really excited. Being in the water really seems to help the amount of pain that he has!
I better go for now. I will write more soon!
Martha
Monday, July 30, 2007 7:19 PM CDT
Hi! I wanted to let everyone know... I am going to make this a password protected site VERY SOON. If you still are interested in keeping up with Joey, just email me at the address at the bottom of the page and let me know that you still want to follow his progress and I will be sure you get the password information when I change his site. Once I change it, you won't be able to get into the site without the password!
Joey is doing ok. He had his physical therapy evaluation last Tuesday. At this point, he will be going weekly up to Cook Children's Hospital Rehab. She also gave me some exercises to help him with at home. He is not tolerating any extra physical activity very well right now. I am not sure what the answer is, but I plan to talk to his physical therapist and also his neurologist about it. For instance, on Friday we went to McDonalds for a couple hours. He did ok while we were there with the help of Advil, but the rest of Friday and all day Saturday he was in bed hurting and refusing to walk. (He chose to stay home with me instead of going to his grandparents house for the day to play with his cousins) Sunday afternoon, he rested. Sunday night, he went to a party with some kids from church. There again, with the help of tylenol and advil he did ok while he was there, but all day today he has been hurting and doing very little walking or getting out of bed.
Being in the water really seems to help him, but I can't find anyone around here that does aquatherapy for kids. I am still looking.
Please continue to keep Joey in your prayers that we may find something to help his pain. Also Samantha has her off treatment bone marrow aspirate and spinal tap on Friday. Please keep her in your prayers that both tests may show NO LEUKEMIA! Both kids love others to sign their guestbooks. Please take a few minutes to do that. If you want to sign Samantha's please feel free and just tell her you are a friend of Joey's. :)
Again, please email me soon if you want to still follow Joey's site after I add the password protection to it.
Martha
Friday, July 20, 2007 8:01 AM CDT
Hi! Not too much new going on here. I did find out that Joey's appointment on Aug 20 is just with Joey's neurologist. We will decide at that point when to do botox again. In the meantime, Joey's muscle relaxer dosage has been upped to 10 mg /twice a day. He seems to do pretty well with that. How much pain he has varies from day to day. He starts Physical Therapy and Occupational Therapy at the hospital on Tuesday. Once school starts he should hopefully be able to go OT and PT at school. There are also a couple of other therapies that I am trying to get him in that should help as well. (Aquatherapy (water) and Hippotherapy (horses not hippos :) ) Being in the water really seems to help Joey's legs.
Tomorrow, we are going to a free showing of the new Arctic Tale movie. We still have alot of neat things planned for the rest of the summer. This past Tuesday we went to a free showing at the Burleson Library of the movie Eragon. The admission was free and the kids all got free Capri Sun and popcorn. :) If anyone that lives in the area or wants to visit the area and go to Six Flags with us, just let me know and I might be able to help you out with tickets. (either discounted or free) I can also get discounted tickets in to the Fort Worth Zoo.
I better go for now. If you have not had the chance yet, PLEASE go sign Samantha's guestbook to tell her CONGRATULATIONS for COMPLETING LEUKEMIA TREATMENT! Just tell her that we sent you. :) Her link is below.
Martha
Monday, July 9, 2007 11:08 PM CDT
SATURDAY, JULY 14 6:41 am- As of last night, Samantha, our cancer warrior, is now OFF TREATMENT! This is a very big deal! These kids are put thru so much for 2 1/2 years and they definitely deserve some kind words during this hard time and when they are finished. Her OT party will be in August sometime. PLEASE go by her page (Link below) and sign her guestbook. Tell her we sent you! Everyone here is fine. We are going swimming today. I changed all the pictures out this morning. I have alot of new pictures from this summer and we have not been swimming yet, where I plan to take more. :)
Joey is still in complete remission! We went back to the oncologist today for a follow up and his counts are all in the normal range! We don't go back there until September 4. That morning before his appointment he also has to have an Echocardiogram on his heart. There is a chance that some of the chemo can damage his heart so they have to keep an eye on it as well as the heart murmer that he has.
He goes back to the neurologist on Aug.20 to get his botox injections. School starts for them on Aug 27.
In the meantime, Joey and all the kids continue to enjoy their summers and being out of school. We have been doing alot of fun things! We have season passes to Six Flags and are enjoying being able to go there. :)
Martha
Saturday, June 30, 2007 9:16 PM CDT
Hi from Humble,Texas. We are currently down visiting Dan's parents. We got here yesterday evening. The current plan is Dan and I will leave on Tuesday since he has school on Tuesday and Thursday evening and the kids will stay here until Friday when we meet to pick them up. This could change depending on how Joey seems to be feeling.
Over last weekend, he continued to feel bad. On Monday night, he started running some fever. I called the cancer clinic and they wanted me to bring him in on Tuesday for an exam and blood counts. Some of his counts were off. The oncologist and nurse practitioner felt he had a virus. They initially wanted me to bring him back on Monday (July 2) to recheck his counts to make sure they go back to "normal" ranges. I got permission to wait until Monday, July 9th to bring him in if I would watch him VERY closely and bring him back in if there was a problem.
He is still complaining alot of his legs, stomach and head hurting! We did go play putt putt golf at Mountasia today. He did ok at first (with the tylenol I had given him) , but he was really tired and complaining he was hurting by the time we left. We went with some good friends of ours that are here visiting from South Africa where they have lived for the last year.
I should probably go for now. Please continue to keep him in your prayers that he may get past some of his current struggles! He always appreciates friends and family signing his guestbook.
Martha
Saturday, June 23, 2007 8:00 AM CDT
Good morning! Joey had been doing really well since he got Botox at the end of May, but the last couple of days he has been complaining of his bones hurting all over. I am not sure why he is having so much trouble. He may have overdone it when he was playing on Thursday afternoon. His neurologist told me I could increase the dose of the muscle relaxer he gets twice a day. If he hurts like this all weekend I will get him into the doctor next week.
We are going to the zoo with some friends today. He has not seen his best friend Ethan since before Ethan moved in the summer of 2005. He is hurting enough he has been asking if we can rent him a wheelchair at the zoo.
We will see how today goes. Please continue to keep him in your prayers and sign his guestbook when you get the chance! Thanks!
Martha
Tuesday, June 5, 2007 7:16 PM CDT
SATURDAY, JUNE 9,2007 10:22 PM- HI! Be sure to check out the new pictures that I added today. We met Dr.Wilkinson and her sweet baby girl Emilee at El Chico for lunch. We all really enjoyed the visit! Today was the first time that we had been able to see Emilee. She is 7 1/2 months old. Also we found out this week that Joey will start wearing knee extenders with his night braces. He will also start going to physical therapy 2X/week (I got the "prescription" from the dr in the mail and I plan to call and set it up on Monday. I am officially done with my job. In a way, I am really excited about it , but I am also a little sad since I have grown quite attached to some of the toddlers that I have taken care of for the last 10 months. The kids are quite excited that I will be home with them instead of working and that we are planning to take "field trips" this summer. Monday, we are going to the zoo. I think that is about it for now!
Hi! I am so sorry for the delay in updating! Joey got his first botox injections last week. He got 2 injections in each leg. The good thing was he does not remember any of it. The nurse came in and gave him "happy juice" (Versed) and within about 20 min he was so relaxed he could not even sit up. The doctor came and got him and carried him to another room, gave him the injections, and carried him to the bench by where I was going to check out. When he tried to sit him on the bench he immediately fell over so it was decided at that point I would go get the van and bring it to the side entrace and the nurse would meet me there with him. On the way home I had promised him we would go by Jack in the Box to get him a shake. We were almost there and I asked him what kind he wanted. His response was "I thought we had to go to the doctor and get my shots before I got my shake". He did not remember even seeing the doctor much less getting the shots and his eyes were open and he was talking to us the whole time. So atleast it was not a traumatic experience for him! The good news is he should only have to get these injections every 3 months. We have noticed a HUGE IMPROVEMENT in his pain since he got the injections!
Yesterday, he had a check up and bloodwork done at the cancer clinic. His counts looked good and we don't have to go back for 3 MONTHS. YIPPEE!
His next drs appt won't be until the beginning of July when he goes back to the allergy/asthma specialist.
School is now out for the summer. All the kids passed to the next grade. Jason will be in 8th, Dustin in 6th, Jarrett and Selina in 5th and Joey in 4th. Joey has started having ALOT of memory and attention type issues due to his cancer treatment and he has only been off treatment for 2 years. Studies show he could still continue to decline in these areas for another 5 years. There has been a HUGE decline in his math skills! When he went off treatment he was WELL AHEAD of his peers in both reading and math. He is now grade level in reading and WELL BELOW grade level in math. He did well on his reading standardized test for 3rd grade but did TERRIBLE on his math standardized test for 3rd grade. When school starts he will have alot of testing done at school to determine what we need to put in place for him. It looks like we will be able to get both physical therapy and occupational therapy for him at school.
I think that about covers everything for now. Oh yes...I quit my job last week. My last official day to work will be next Friday, June 15th.
Please continue to keep him in your prayers! He still likes reading entries in his guestbook! :)
Martha
Friday, April 27, 2007 6:24 PM CDT
Just to update you after our neurology appointment yesterday...The neurologist diagnosed him with Spastic Diplegia Cerebral Palsy. For those of you wondering what on earth this is...basically instead of the muscles working together they work against each other causing pain, stiffness , swelling etc. That is the shortened version...if you want more just let me know. I am working up a more detailed email to send out to those interested. CP is NOT something that he will OUTGROW...infact as he grows he will likely just have more problems with it. The good news is it shouldn't shorten his life span at all. Currently the plan of action is ...He will start taking a muscle relaxer twice a day, he is going back to wearing splints on his legs when he sleeps and on May 24, he will have his first botox injection. This should also really help his muscles and pain. Botox injections are given every 3 months. He will get pre medicated before the injection. After he gets his botox injection he will also have to go to physical therapy for awhile. That is the current plan of action. This is a new experience for all of us and we are just taking one day at a time. Please keep us all, especially Joey , in your prayers!
We are still planning to do the Relay for Life walk next weekend. PLEASE consider giving a little to a great cause! (Just click on the link below)
Martha
Saturday, April 21, 2007 12:46 PM CDT
HI! Sorry it has taken me so long to update. It seems like there is always alot going on here!
We have the walk coming up in 2 weeks (from last night). The details are above. PLEASE consider joining us to walk or donating to our teams total at the link below. It is a very good cause!
Joey has had a couple appointments since I updated last. His last appointment at the oncology clinic was a couple weeks ago. He started in the Life After Cancer program which they start when they have been off treatment for 2 years. He still will get a check up and bloodwork, but they focus on helping the patient with any long term problems that they may have. One of the things discussed in that appointment is how small Joey is for his age. (about 25% compared to other 9 year olds). I made a comment about him being a preemie (born 3 mo early) and only weighing 3lbs 3 oz. Anyway, the current thinking is alot of Joey's physical problems and pain are the result of a combination of his premature birth and his cancer treatment. The np from the cancer clinic, the psychologist that tested him and the pediatrician all feel there is a really good chance he may have cerebral palsy (cp) from being born so early. That would explain both his physical pain issues and his respitory issues. We go next week to the neurologist and it will be discussed more then. He really is having ALOT of pain issues right now. ANY time he walks quite a bit he will end up in tears because he is hurting. Both at the NASCAR race on Sunday and the Texas Rangers game last night where we walked quite a bit he ended up in tears. Both events he was VERY VERY excited about, but he just can not physically take all the walking.
Yesterday I took him to an allergy/asthma specialist that I had been told about. I was VERY impressed! Dr.Bailey seems like a WONDERFUL doctor. She did allergy testing on him. The good news is that he is not allergic to his cat or Selina's dog or anything in the house. The bad news is he is pretty much highly allergic to EVERYTHING outside (grass, trees, weeds). She put him on Nasonex Nasal Spray and Zyrtec once a day and Advair (preventative for asthma) twice a day. She also did a sinus xray which showed his sinus passages are mostly plugged up. He will finish up his current antibiotic(Amoxicillan) which he is on for strep. He will then do 2 rounds of Zithromax (5 days each) with a 5 day break inbetween. HOPEFULLY that will TOTALLY CLEAR up his sinuses. He has an appointment to go back and see Dr.Bailey at the beginning of July.
We got the results from the educational testing that he had done awhile back. Unfortunately it showed some regression in some areass. (mostly math, memory and attention) He REALLY REALLY struggles with paying attention in school and getting his work done. It is important to get this testing done yearly because he can continue to decline in these areas until he has been off treatment for 7 yaers! We are in the process of getting some things put into place in school so hopefully he can be more successful.
I need to go for now. Please consider either joining us for the walk or donating to our team total. Every little bit helps to find a cure! Thank you so much for any help you can give!
Martha
I have alot of new pictures from everything we have done lately. Please check back every few days to see new ones. :)
Sunday, March 25, 2007 4:12 PM CDT
Hi! I hope everyone is doing well! Sorry it has been such a long time since I updated. Things tend to stay very busy around here.LOL
Joey has been doing pretty good.His leg pains have gotten some better...I think because the weather is warmer. His asthma has been really acting up the last week. He just finished up 5 days worth of steroids and unfortunately that did not totally clear up his problem. It did help some, but he is still NEEDING 2-3 treatments a day. We are having to limit the amount of time he spends outside because the more time he spends outside the more he wheezes. He has an appointment in April with an Allergy/Asthma specialist. Dr.Bailey comes highly recommended so hopefully she will be able to help him. He also has an appointment for bloodwork and a checkup coming up next week I believe at the cancer clinic. I have to call tomorrow and make an appt for him to get his ear checked at the pediatricians office. He started complaining this weekend about it hurting. Considering how nasty his sinuses have been that is not a big surprise.
As you can see, last Saturday Joey had a really exciting day. There is an organization called Challenge Air (www.challengeair.com) that was set up to let kids with various physical disabilities have the joy of flying a plane. Joey was considered the "copilot" and he actually got to steer the plane for quite a while when we were in the air. He LOVED IT! The pilot was very impressed at how quickly and well Joey was able to follow the instructions he gave. He really seemed to take to flying! The picture at the top of the page was taken when Joey was actually steering the plane. :) I took alot of pictures so be sure to check back.
We have a Relay for Life walk coming up on May 4. Please check back for details. :) We are going to be busy getting ready for this for the next month.
Joey and the rest of our family are also going to our first NASCAR race on April 15. We are all (except maybe Selina LOL) very excited about this!
I think that about covers what we have going on for now. :) Be sure to check back (hopefully tonight) for details about the Relay for Life walk.
Martha
Thursday, February 1, 2007 12:25 AM CST
Good evening everyone! I hope everyone is doing good and staying warm! :) It has been ALOT colder down here in Texas this year than we are used to! In the last several weeks, we have seen freezing rain, sleet and snow (more than once).
Joey is still struggling somewhat healthwise. He has been off the antibiotic from his last round of strep since this last Friday. He is continuing to run the same low grade temp he has had since October. (even when there is no obvious infection) He also complains that his legs are hurting quite a bit. I called the cancer clinic and talked to the nurse to see what they would suggest. She wanted me to make an appointment to come in soon for bloodwork and a good check up. The soonest they could get him in is next Friday, Feb.9. He also has an appointment on Tuesday with the neurologist. Hopefully between the 2 appointments we will get some answers and HOPEFULLY it won't be anything serious.
I wanted to explain something that I was asked about recently. Someone made a comment about Joey having alot of dr appointments and the fact that he gets blood drawn frequently. The reason for this is....While it is not expected that Joey will relapse (his cancer come back), it is NOT a guarantee. Leg pain, recurrent infections and fevers are some of the symptoms of leukemia. Anytime Joey, or anyone else who has had cancer, has ANY suspicious symptoms it HAS to be checked out just incase the cancer is back.
I hope this helps a little.
I need to get to bed considering I have to be at work in less than 6 hours. Please keep Joey in your prayers that we find out the source of his problems and that it is not something serious. I will update again soon.
Martha
Wednesday, January 17, 2007 10:59 PM CST
Joey has really had a hard time lately. We were back at the dr on Monday with a 104.3 temp and another case of strep throat. He had just finished the round of antibiotics from the last round of strep less than a week before. I had taken him back to the pediatrician on Thursday of last week to have the strep test repeated and it was totally clear. We are starting to get concerned that he can not seem to stay well. He started this round of antibiotics on Monday evening and his temp has still not broken yet. I plan to take him back to the dr tomorrow. He has been sick most of the last 3 1/2 months with various things. He has also had alot of problems with his asthma and pains in his legs.
He had has oncology check up on Friday last week. It went ok. His counts were ok but not great. We are scheduled to go back at the beginning of March at this point, but if alot of things don't change with how Joey is feeling we will go back sooner.
On a positive note...(mostly only positive because the kids are getting a kick out of it not because it is fun to drive in or anything) This background that is up is rather appropriate for our weather lately. Sunday and Monday there was alot of ice, sleet and freezing rain. The roads were a mess. Kids already had a holiday from school on Monday because of the holiday. They were back at school for Tuesday. Today we woke up with SNOW covering the ground (yes we still live in Texas LOL) so school was cancelled today. Not sure what the plans are for school tomorrow yet. We are expecting round 3 of this mess on Friday night and Saturday.
One more thing...We are in the beginning stages of planning for our next Relay for Life walk to benefit the American Cancer Society. If you think there is ANY chance you might be interested in joining us please let me know. There are quite a few different walks to choose from in the metroplex and depending on where everyone lives that wants to participate will depend on which walk we go to and the date. They are all on various Friday nights in either April or May. It is a very worthwhile event and I promise you will not regret going. If you are close to Joey or anyone else who has suffered from the horrible disease of cancer you will feel it is a wonderful event and that you are doing something to help raise money for research. The survival odds of most types of cancer are improving, but they are far from perfect. Joey,Samantha or any other survivor could relapse at any time. There are still way too many people dying from this horrible disease and it could very well be someone you know well and love. Please consider it. It is not at all a depressing event. There are TONS of fun activities going on for everyone.
I am going to run for now. PLEASE email me at the address below if you think there is a chance you might be interested in joining us. Please continue to keep Joey amd Samantha in your prayers. Samantha has been some better and has been able to go back to school some. She is back on chemo after being off for over 3 months. She is still taking daily infusions at home.
Martha
Thursday, December 28, 2006 0:32 AM CST
THURSDAY-7:08 PM- Joey woke up from his nap with a 101 temp. I called the dr and they said to bring him right in. He now has strep throat! Poor kid can't catch a break!
Joey had a very SAD DAY! We found out this afternoon that his cat had FIV (which is the cat version of HIV). We had to get James put to sleep. He was only about a year and a half old. Joey was very upset! He felt a little better when we told him he could keep one of the kittens that Jason's cat currently has. He has chosen a little male cat that looks like James. It is also solid black. On his page for the next couple of days there are some pictures of Joey with his old cat James.
I have alot of new pictures to share from the last week. Be sure to check back. :)
Martha
Monday, December 25, 2006 10:22 AM CST
MERRY CHRISTMAS! We hope everyone has a great and fun day!
Please continue to remember Samamtha in your prayers! She is in the hospital with RSV. Please sign her guestbook. (www.caringbridge.org/tx/samanthab) The hospital is not the place to be on Christmas! :( I was up there for about 4 1/2 hours on Saturday watching her so her parents and other family could do cake and presents with her little brother for his 4th birthday. Despite the fact she was feeling pretty crummy, we still got some good painting and My Little Pony Memory game playing in. :-)
Keep checking back for pictures. I will post them as soon as I can. We have been busy between all the excitement of Christmas and the fact that most everyone around our house is sick.
We leave on Thursday to go to Houston...assuming everyone is well by then.
Martha
Thursday, December 21, 2006 4:49 AM CST
Sam is better. She was able to get out of the hospital on Wednesday afternoon.
That is about all I know on her for now. When I talked to Rachael, she was on her way to take Sam's stuff to the truck so they could leave.
Joey has been sick the last few days. I plan to take him in to the doctor today. He has a fever, sore throat and is coughing REALLY BAD! (which is why we are both currently up at this hour) I am going to sign off for now so maybe we can both go back to sleep before anyone else wakes up.
Martha
Sunday, December 17, 2006 0:16 AM CST
PLEASE PRAY!!! Samantha is in really bad shape. She was admitted to the ICU this afternoon with a very high fever and very high heartrate. They also found out last night that she has an infection in her blood in addition to the serious fungal infection. Details are on her page...www.caringbridge.org/tx/samanthab .
Please take a minute to go sign her page. Her and her family definitely need all the prayers they can get! Her mom, Rachael is also having some health problems. I will find out tomorrow, but I may go pick up Samantha's brothers who are 2 1/2 and 4. I am off for the next 2 1/2 weeks so it will be much easier for me to help out any way that she needs me to.
We are all fine. Kids are out for Xmas break and are really happy about that! The kittens are just starting to open their eyes. It is amazing how much they are starting to move around considering how young they are and the fact that they can not see yet.
Joey goes back to the HO clinic in the middle of January. Unfortunately they were not able to get him in sooner when I had to reschedule his Dec 1 appt.
I can not think of any other major happenings around here right now (maybe because I am half asleep sitting here :) )
I will try to update my page frequently with Sam's condition.. Thanks again for signing her page.
Martha
Thursday, December 7, 2006 6:13 PM CST
Good evening everyone! Samantha is doing some better. She was able to go home from the hospital on Monday evening. At this point they are still waiting on the test results from the tests that she had last Thursday. Even tho she is home she is having to have 3 hours of IV medication each day. She has a follow up CT scan on Monday to check on the size of the nodules in her lungs. For the time being she had to be taken out of school. Depending on how the next few weeks go, she MAY be able to go back after Xmas. Please continue to keep her in your prayers! She loves for people to sign her guestbook! Just tell her we sent you! (www.caringbridge.org/tx/samanthab)
Joey is doing ok. He has been back at school since the Monday after Thanksgiving (so 2 weeks now). He has felt really good until yesterday when he started complaining of his throat and stomach hurting (which those were 2 of his symptoms when he had mono) If it continues thru the weekend I plan to take him to have more bloodwork done at the pediatrician. From what I have heard and the research I have done, mono can stay in your system even without symptoms for like 6 months and it can come back easily.
My work situation has changed some. I have cut myself back to parttime. It was too hectic here in the evenings trying to get homework etc done when I was not getting home until 5 or 6. I am now going in at 6:30 am and getting off by 2:30 pm. (Dan is here to get the kids on the bus) The big key is my bosses have agreed to either totally let me off when the kids are out of school or let me bring the kids with me.
I think that about covers what is going on. I also plan to call and reschedule his bimonthly oncology appt. Hopefully we will get that done in the next couple weeks.
Martha
I hope you enjoy all the new pictures. Most of them were taken when we were out of town for Thanksgiving. The last one is Samantha and I took it last Sunday when I was visiting her in the hospital.
Saturday, November 25, 2006 10:06 PM CST
Samantha is in desperate need of prayers! She is in the Children's Medical Center of Dallas right now and has been since Wednesday. She has a serious fungal infection called "phoma" and also has a viral infection called "c-diff". Her counts have been really low. She is getting several procedures done on probably Monday. Please visit her site (www.caringbridge.org/tx/samanthab) for more info and to sign her guestbook. Tell her that we sent you. Thanks a bunch!
We are back home now after being at my parents house for Thanksgiving. Joey, Selina and Jarrett all came home with colds, but other than that everyone is good. Joey has recovered well from his mono and will go back to school on Monday. He is still working on completing the work he missed during the 2 weeks he was out of school.
I will try to update Joey's site with new info on Sam. (tho probably not as often as what her site is being updated right now)
Martha
Tuesday, November 21, 2006 9:44 PM CST
Hi! Joey is hanging in there. He still has a little bit of a cold and sore throat and is still sleeping more than usual, but he is getting better. He will hopefully be in good shape to go back to school next Monday. For the most part, he acts like he is feeling alot better. :)
Please go by Samantha's page and sign her guestbook. Just tell her that we sent you. She is really having a terrible time right now. She is currently sick with fever and low counts. These kids are put thru so much during the course of treatment! She has already missed over 20 days of school this year.
We hope everyone has a Happy Thanksgiving! We are leaving town tomorrow to go spend the holidays with my family in the country (about 3 hours away). We will be returning home on Sunday evening.
Martha
Wednesday, November 15, 2006 10:49 PM CST
Unfortunately Joey has hit another "bump" in the road of recovery. Let me back up a bit.... My wonderful parents offered to let Joey come there for the week so he would be able to rest and finish recovering from his mono. We met them halfway on Monday evening. He had started to get some better. His temp was down to low grade and he was eating some though he was still sleeping alot. Last night when I talked to him on the phone, his throat sounded real scratchy (sore throat is part of having mono). This evening my mom called and Joey has developed a NASTY cough late this afternoon and was running some fever. At this point, he has not started having trouble with his asthma. PLEASE keep him in your prayers that his cough/fever get better and that his asthma does not start acting up while he is away. I will update again if anything changes.
Martha
Wednesday, November 8, 2006 8:15 PM CST
Sunday, November 12, 2006 9:00 PM- Joey is doing some better. His temp has gone down some and he is eating some better. He is still very sleepy all the time and frequnetly complains his stomach and throat are still hurting. Please continue to keep him in your prayers!
Well the really good news is...it DOES NOT look like Joey's leukemia is back. The bad news is he did test positive for mono. Please continue to keep him in your prayers. From the research I have done, he may be "under the weather" for awhile. Please remember to sign his guestbook. :)
Martha
Saturday, November 4, 2006 3:52 PM CST
MONDAY-3:08 PM- I had Joey at the pediatrician today. He did not see any obvious signs of infection that would cause the fever he has had off and on. He did alot of tests today. The strep test came back negative. He also did urine tests, a chest xray and ALOT of bloodwork. The biggest concern with fevers and no obvious sign of infection is that the leukemia is trying to come back. I have to take him back to the pediatrician on Friday morning. The bloodwork etc was set to an off site lab. Obviously if something bad shows up (leukemia blasts or major infection) the pediatrician will call us back sooner. In the meantime I have to write down everytime he has a fever etc and take it back with us on Friday. Please keep him in your prayers that they may find something simple causing his fevers and it's not the leukemia coming back. Thanks a bunch! If you have a minute please sign his guestbook.
Sorry it has taken me awhile to update Joey's site with pictures from his birthday. Things seem to stay busy around here. I am starting off posting the pictures of him with his cake. In the next few days I will start posting pictures of him and his friend Hunter when we went skating for his birthday.
Joey is currently not feeling well. He is running fever and has a sore throat and also a stomach ache. Please keep him in your prayers that he starts feeling better soon. I plan to take him to the doctor on Monday morning if he is not better before then.
Please also keep Samantha in your prayers. They found out this last week all the stomach problems that she had been having were because she had gotten Salmonella. She is currently on medicine.
Martha
Friday, October 13, 2006 5:08 PM CDT
Tomorrow, October 14th, is Joey's 9th birthday! Please take a few minutes to sign his guestbook! Thanks a bunch!!!
Martha
Monday, October 9, 2006 8:45 PM CDT
Sorry it has taken me a week and a half to update after Joey's last oncology appointment. Things seem to stay very busy around here.LOL Hie appointment went well. Blood counts and checkup were both fine.
Joey has not felt well the last several days. On Saturday, he woke up with one of his eyes swollen and a cold. By Sunday, his eye was still swollen, his sinus' were worse and he was having trouble breathing (asthma). We spent 2 1/2 hours in the emergency room. The doctor felt his eye swelling was just allergies, but despite the fact that he has had alot of benedryl this weekend, his eye is still swollen. His asthma problems continue to be bad. He was put on steroids for 4 days and he takes breathing treatments every 3-4 hours as he needs them. (which is very frequent) Unless he does ALOT better over night then I plan to keep him home from school and take him to work with me. He is not able to be up and around too much or he starts coughing and wheezing again. Please pray he starts to feel better very soon!
A bit of exciting news.....his 9th birthday is this coming Saturday, October 14. Hopefully he will feel alot better by then. His grandparents (Dan's parents) will be in town to celebrate with us. I am not sure what we are planning to do yet.
Please keep me in your prayers as well! I am interviewing (this week hopefully) for the Assistant Director position at the daycare that I work at. The interview is with my boss' boss and she is the one who makes the decision. Hopefully I will know more about that this week or next.
Check back soon for birthday pictures.
Martha
Saturday, September 23, 2006 2:03 PM CDT
Hey everyone! Sorry I have not updated in awhile. In the future, that just means things are good, but busy. We have now completed 6 weeks of school for the kids and 6 weeks of work for me. The kids are supposed to get their report cards next week sometime (Wed or Thurs I believe). Overall the kids seem to be doing well! I will know better once I get their report cards. Jason is in 7th, Dustin in 5th, Jarrett and Selina in 4th and Joey in 3rd.
Work is going well. I stay pretty busy working full time and then coming home and doing homework etc with 5 kids every evening. When I started work (6 weeks ago), I was responsible for 3 babies.....I now have 5 and next week I will get 3 more for a total of 8 kids between 3 mo and 15 mo. The enrollment is rapidly growing. We now need some more staff!!! Legally, I am allowed to have 4 babies when I am by myself. Joey and Selina really enjoy coming there after school. They are with the rest of the school kids and not with me.
Joey goes in on Friday of this next week for his every other month check up with his oncologist. They will check his blood counts and also give him a good check up. He also finished up his research study classes this past week that he has been going to for the last 6 mo.
This Monday, September 25, Chili's is giving ALL of the money that they make in all their restraunts all over the US to St Jude's Children's Research
Hospital to be used for pediatric cancer research. St Judes is where alot of the research on all types of pediatric cancer is done. No it may not ever benefit Joey directly but if he were to relapse it would! There are millions of kids that are fighting their own cancer battle and some of them are winning the battle and some of them are not. I did not realize how many kids got cancer until Joey was diagnosed and we were thrown right into the childhood cancer world. Most people think that they could never have a kid diagnosed with something like that, but it can happen to ANYONE! We used to think the same thing! PLEASE consider taking a little time to go to Chili's to eat on Monday and help the much needed pediatric cancer research that is being done at St Judes! If you want to decorate a pepper in honor of a kid (this is totally free) you can go to the Chili's website (www.chilis.com) Be sure if you decorate one in honor of Joey or Samantha to give me the numbers so I can put them on their pages.
On Saturday, October 22, we are also going to the Light the Night walk in Plano,Texas to benefit the Leukemia and Lymphoma Society. (see info above) If you are interested in donating to our team or walking with us (it lasts about 3 hours) , please click on the link that will hopefully be in the link section of both Joey's and Samantha's pages by the end of the day. :)
Another worthwhile fundraiser is taking place this month at Cold Stone Creamery, as they sell Make-A-Wish wall stars with donations going to local Make A Wish organizations. More specifically, this coming Thursday, Sept 28th, celebrate the 5th Annual World's Largest Ice Cream Social and Support the Make-A-Wish Foundation® with Cold Stone Creamery
Visit your local Cold Stone Creamery and try a very special “Make-A-Wish Creation™” inspired by Cole, a 10 year old Wish Child from Colorado. Cole’s Creation combines chocolate ice cream with fluffy yellow cake, chocolate chips and rainbow sprinkles.
To cap off this special month, please join us for the 5th Annual World’s Largest Ice Cream Social at participating Cold Stone Creamery locations nationwide, a special night to join together and share the simple pleasures of life with a FREE ice cream, family activities and good-natured fun. Search our site for a location near you. On September 28th from 5:00 - 8:00pm, guests will be treated to a serving of Cole’s Creation*. In exchange for the free Creation, customers are encouraged to make donations to benefit the Make-A-Wish Foundation.
Joey is also getting very excited about his 9th birthday coming up on October 14th.
I think that pretty much covers everything we have going on these days. :)
I hope everyone has a great weekend! I will update again probably next Saturday once I get report cards, Joey has his appt and I have some more new pictures to share from the fun we have when Samantha and her brother spend the night.
Be sure to check out the new pictures that were taken last weekend.
Martha
Thursday, August 3, 2006 4:28 PM CDT
FRIDAY-9:20 PM- i have a job!! I am going to be working at Child Time (it is a daycare). I will be the head infant teacher. I start on Monday. My boss is very willing to work with me around kids doctor appts etc. The daycare is about 2 minutes from our house.
No news on the charter school yet. I am supposed to call back on Monday morning.
We have a VERY busy weekend ahead with buying school supplies, getting haircuts etc. I will update probably Monday evening/night sometime to let everyone know what happened with getting the kids in.
WEDNESDAY, AUGUST 9, 2006- 6:38 PM-
Just a quick update on a few things....I found out today that Jason has made it up to NEXT on the waiting list for the charter school (he was 6th in line). Selina has gone from 10th on her waiting list to 3RD! The other 3 boys had not made alot of progress, but if we can get Jason and Selina in then by next year hopefully they will all be in.
Joey goes in to the orthotics place on Monday, before school starts on Tuesday, to get his braces checked. He will have both neurology and oncology appointments in September. His stomach has been doing SO MUCH BETTER since he started taking Zantac and we put him on a special diet to help his acid reflux
Unfortunately, I still can not say I have a job yet....still looking....
Hey! Sorry for the delay in updating! Things have been rather busy, but good.
Joey had his bimonthly oncology appointment last Friday. His bloodcounts continue to look real good. He is still having alot of trouble with his stomach. His oncologist put him on zantac twice a day to see if it would help. He feels he may have acid reflux like Jarrett. I am supposed to call him back tomorrow to update him on how Joey is doing. He said depending how he was doing with the zantac, he may want us to go to a gastroenterologist (stomach dr) to be checked out. His legs are about the same. He does pretty well with them as long as he wears his braces and takes his medicine at night. I have to take him back to the neurologist soon and I am going to see if we can try cutting his medicine back down since he is about to have to start functioning at school. He only takes it at night but he sleeps longer at night and tends to walk around looking very sleepy all the time. It is not unusual for him to fall asleep for awhile in the daytime. During the summer that is not as much of a problem , but it will be at school if he can't concentrate on his schoolwork. But we don't want his legs to hurt him either so I am not sure what we will end up doing. Joey has 5 more times to go to his Tuesday night class that is a part of the research study he has been in since March. He will be retested when he is done with his classes and then again 6 months later.
The kids are in the process of winding down in their classes at Sylvan. Jason and Joey will be finished the day before school starts. The other 3 al lhave some free classes coming so they are scheduled to finish up on September 4. They have all made strides in their schoolwork since starting Sylvan in March! Joey was already in real good shape academically so he really should be now with what he learned during the last 6 mo at Sylvan. We have to keep a close eye on him for any signs of learning problems/attention problems that could show up as a result of the chemo treatments that he went thru. These type problems can show up up to 7 years off treatment and he has now been off treatment almost 17 mo.
School starts here a week from Tuesday (August 15). We have not done much to get ready for it because we are still not sure where they are going. They are all on the waiting list for the charter school(see previous entry) and Jason and Selina are both pretty high up on their grades waiting lists. The other 3 aren't very high up, BUT if we can get one or both of the others in, then they will be given priority to other kids if a spot comes open in their grade since they will alredy have a sibling in the school. The secretary suggested I call back to touch base with her at the end of next week to check on where they are on their waiting lists if SHE HAS NOT CALLED ME BEFORE THEN! So we wait.... If we can get Jason and Selina in now then hopefully by next year they will all be there! Obviously if Jason and Selina get in the charter school they will have different school supply lists and they will also wear uniforms so that would mean they wouldn't need a bunch of school clothes.
I am in the midst of job hunting....FUN! FUN! This morning I went on a job interview for a teachers aide position at one of the other elementary's in the district. I would be the FT aide in the PPCD (preschoolers with disabilities) class. I should hear something on that tomorrow. I also go tomorrow to interview for a nanny position for a 10 mo old girl and 2 1/2 year old boy. There are positives to both positions. I am just going to have to weigh the positives/negatives. HOPEFULLY one of the positions will work out. If I get , and take the school position I may see about taking whoever is not in the charter school (except Jason who would go to an intermediate school) with me and letting them attend at the same school where I would be working. It would be more convenient to have them in the same school with me, but since we are trying to get them in the charter school I hate to move them now and then move them again when a spot opens up at the charter school.
I think that about covers what is going on here. :-) Please keep us in your prayers! There is alot going on here right now with deciding on schools and job hunting.
BE SURE to look up above the journal entry and see the information about the Light the Night walk we have coming up in October. I will try to get the link up soon if anyone wants to donate to our team's total or wants to join us for the walk (it only lasts 3 hours-no you are not walking the whole time) Alot of the money that is earned goes toward research for leukemia and lymophoma treatments. It may not benefit Joey directly , but if he were to relapse it would. ( and YES he still could !!!) Samantha is still on her leukemia treatments and their are new people diagnosed with leukemia every day.
I will update again soon with a job and school update. :)
Joey still loves guestbook entries if you get a few minutes.
Martha
Friday, July 7, 2006 2:57 PM CDT
Hi! Hope everyone had a great 4th of July. We went to Houston for the weekend. Dan's parents watched the kids overnight on Sunday so we could go out and celebrate our upcoming anniversary without the children. On Sunday evening after church they took the kids to play putt-putt golf and then on Monday during the day they took them to a nature park. (see pictures) As you can see from the pictures, Joey's daytime braces have not slowed him down at all. He is still able to run and play like he could before.
We got back on Tuesday afternoon. We have not really done much since then because most everyone has been sick at some point this week. (some stomach problems and some sinus problems)
We have applied to get the kids into a new charter school that is opening up not too far from our house. We should find out at the end of next week if any of them will make it in. It is going to be a really neat environment for all the kids who are able to make it in. There will average about 13 kids for every teacher and they do alot of hands on activities and field trips. They had an even bigger response from the community than they were expecting. They have about 300-350 spots from K-8 and about 1500 applications. All the names are entered into the computer and the computer chooses the names for each grade. When I called last Friday, they had chosen 1/2 the kids and none of mine had made it in, but the lady said that our kids had a "good chance" of making it in on the second round. So I guess we just wait and see. We turned in applications for all 5 kids and plan to send any of the younger 4 that make it in (even if they don't all make it in) If Jason makes it in, we will talk about whether to put him into Harmony Science Academy or the program that he was put in in his last ARD meeting for next year at Crouch Intermediate. If you are interested in looking at the schools website it is....www.hsatx.org .There is not too much on the Fort Worth school site yet, but if you look at some of the other schools you can see the type of things that they do.
I have more pictures that were taken of the kids on their nature park outing with their grandparents on Monday. I will change the pictures out in a few days.
Martha
Wednesday, June 21, 2006 6:46 PM CDT
Hi everyone! I just wanted to update real quick to tell everyone about a movie that is coming on PBS tonight and tomorrow night at 8 PM. The movie is called "A Lion In The House". (It may be in your tv guide under "Independent Lens") It is about 5 kids that had some type of cancer and their families. It follows them over a 6 year period of time. It is recommended for adults only. 3 of the children have leukemia. If you want to see the types of things that Joey, Samantha and other kids diagnosed with cancer endure PLEASE watch this movie. Most people have NO IDEA what these kids are put thru. I know I didn't until we had to experience it personally! Hopefully we will NEVER have to endure a relapse or worse! Apparently this movie is very thorough in dealing with all aspects of childhood cancer. I understand it is not a pleasant thing to have to hear about, but what about the people that have to live it....
Martha
Friday, June 9, 2006 3:36 PM CDT
HI! Everyone here is good. Joey got his daytime braces on Wednesday. He is gradually getting used to them, but he really likes them. :-) One of the strips on them has motorcycles on it. :-) I will post a couple of pictures of Joey in his daytime braces in a few days.
The kids have all been staying busy. They go to Sylvan twice a week and this week we have also gone to Vacation Bible School a couple of days. Joey's reading project atleast for the beginning of the summer is HARRY POTTER AND THE SORCERERS STONE. It is a 6th grade level book and he is doing well with it. :-) Not bad for a child only about to start the 3rd grade. :)
We have a busy weekend planned. Samantha (our cancer warrior-link below) and Seth (her little brother) are here visiting until Sunday. Tomorrow we are planning to go swimming and Sunday is Selina's 11th birthday. Selina got an 8 week old puppy for her birthday so all the kids are having fun with him!
Until next time.
Martha
Thursday, May 18, 2006 8:52 PM CDT
PRAYER REQUEST- Our cancer warrior, Samantha, is in the hospital. She went to the clinic today and her counts were very low. (which is VERY unusual for her!) While she was there she also spiked a fever. Please keep her in your prayers that the doctors may find out quickly what is causing her problems and she may feel better and be able to go home! Thanks!
Good evening everyone! Sorry it has taken me a week to update after Joey's oncology appointment that he had on Friday. His counts were pretty good. There are no obvious reasons to cause him to be in pain. The current thinking is his peripheral neuropathy (nerve damage) that he got from the chemo has been acting up again. I called the neurologist and he adjusted Joey's medication dose. He has already slept better the last 2 nights and does not seem to be complaining quite as much during the day. :-)
On Monday, I took him to the orthotics place to get his braces checked to make sure they were still fitting ok. He has had them about 3 months. They still fit ok for now. We will get him checked again about the time school starts unless they just start seeming like they are too tight. It has also been determined that it is time to add daytime braces in addition to the nighttime braces. I will take him on Wednesday morning to be measured for those. The lady at the orthotics place assured me that he should not have very many (if any ) limitations with them. He should still be able to run and play. He just won't be able to walk on his toes when he is wearing them. His normal tennis shoes will be able to be worn with the braces. The most we should have to do is get a little bit bigger pair. He is not AT ALL worried about having to wear braces on his legs during the day. He will have the summer to get used to wearing them before he has to wear them to school. If I remember correctly it will take about 3 weeks for the braces to be made.
I think that about covers the news around here. The kids have 5 1/2 more days of school to go to. :-) They are all excited!
Martha
Thursday, May 11, 2006 2:46 PM CDT
Hi everyone! The walk was really nice! Everyone had a great time! There were a ton of activities for the kids....bounce house, magician, childrens music performer etc. The only downside to the evening was it having to be called at 11 pm instead of running all night because bad weather was in the process of blowing in. I took alot of pictures! Joey and Samantha were 2 of the 4 kids "survivors". The other 2 boys were both older than them. I will be changing out pictures for both sites pretty frequently for awhile.
Joey is doing about the same medically. Still having more than normal aches and pains. I talked to the nurse practitioner from the HO clinic yesterday and told her what was going on. He will be checked out good tomorrow (check up and bloodwork) and we will talk to the oncologist to see if he thinks it is necessary to do any other tests (bone marrow etc) I will update after his appointment with more medical news.
He still really enjoys reading his guestbook entries to know people are thinking about him! Thank you so much!
Martha
Sunday, April 30, 2006 11:17 PM CDT
Hi! This is going to be a short entry because i am on my way to bed. This is going to be a very hectic week trying to get ready for the walk on top of all the "normal" activities when you have 5 kids. :-) Please consider donating to our Relay for Life team "Two Courageous Warriors". The money goes straight to the American Cancer Society to help with much needed cancer research and cancer education. Every donation helps!
Joey has not been feeling good lately. He started having trouble with his legs about a week ago. We have been figuring it is related to the many weather changes that we have had this week; however, the weather has mostly sorted itself out and the problems have just gotten worse. Please continue to keep him in your prayers! If you get an extra couple of minutes, please sign his guestbook so he will know others are thinking of him. Thanks.
Martha
Sunday, April 9, 2006 5:35 PM CDT
Hi! Everything is going real good here. We seem to stay pretty busy around here. We are busy getting ready for the Relay for Life walk on May 5. I have ALOT to do in the next 3 1/2 weeks. The lady in charge of the Relay was telling me that they have some really neat things planned for during the walk. It is a VERY FAMILY oriented event!! Before the walk there is going to be dinner catered in for the survivors and their immediate families from On the Border. My kids can hardly wait. We bought a tent to take with us this year. (most teams take tents since it is an all night event) Joey and Samantha will get to walk the survivors lap this year together. Last year when we went to the Relay here in Fort Worth, there were alot of survivors, but Joey was the only kid survivor. I know there will be atleast 2 kids survivors at the Plano walk this year since they are both on our team. :-) Please consider either joining us for the walk or donating towards our teams fundraising total. EVERY donation helps even it is just $5 or $10. If you are interested in donating online, please see either my personal fundraising page or our team fundraising page in the link section below. I can also take donations by check, cash or money order.
Joey is doing pretty well. His headaches have been better. His brain MRI did not show any reason for the headaches. However, there was some definite change to the white matter of his brain. Basically all that means is this....The chemo that was injected into his spinal fluid periodically during the 2 1/2 years he was on treatment is what caused the changes. Joey at this point will have to be tested for learning/attention type problems once a year.(October) The doctor that tested him explained that learning /attention type problems can show up up to 7 years after the child finishes treatment so we still have 6 years to go. His grades are still fine at this point and he has been going about 6 weeks now to the research study program to help learn techniques to help him pay better attention.
Joey has been having ALOT of allergy problems for the last couple of weeks. Some friends from church told me about a real good allergy/asthma doctor that had helped their kids alot. He has a new patient appointment on May 31;however, they have him on the list to call me if they have a cancellation and can get him in sooner! There is a good possibility that bad allergies could be causing some of his headaches.
I better go for now.
Martha
Saturday, March 25, 2006 0:24 AM CST
For anyone who may be wondering....Joey HAD NOT relapsed in his spinal fluid. We still do not have any idea where the bad headaches are coming from , but the good news is they are not because of leukemia in his spinal fluid (central nervous system) We go to the neurologist on Monday and hopefully he will be able to help us. He also has an MRI of his brain on Thursday. Also, Joey has now been off treatment for A YEAR AND 2 DAYS which means his checkups go from every month to every other month. We do not go back to the HO clinic until May 12.
It is very late and I need to get some rest. I just wanted to be sure I updated with the good news that he has not relapsed!! :-)
I almost forgot... Sam's appointment went good today too. She is scheduled to go back in 3 weeks for blood counts and a spinal tap.
Martha
I took several new pictures of Joey at the HO clinic today. There are several new pics on the photo page right now. I will change them out in a couple days to some more pictures that I took today. I will then go back to boring everyone with pictures from spring break. :-)
Monday, March 20, 2006 10:36 PM CST
TUESDAY PM- I just wanted to let everyone know that Joey is going to the oncology clinic on Friday morning at 7:45 for a spinal tap. The oncologist decided today that he wanted to rule out a central nervous system relapse (leukemia cells in the spinal fluid) since headaches and nausea are the key symptoms for it. Please keep him in your prayers on Friday! We SHOULD find out something on Friday tho it may not be until later in the day. I just found out that Sam is also having some very concerning symptoms. She goes in on Friday to have her counts checked. Please keep her in your prayers as well! Thanks!
Hi! Sorry it has taken me so long to update! Last week was Spring Break and the kids and I were out of town. We went to see my parents in their house in the country in San Saba,Texas. ( a couple hours from Austin ) The kids all really enjoyed the week of 4wheeler/tractor rides, feeding the fish at the pond, camp fires etc. Be sure to keep an eye on the photo page. I took alot of pictures!! I will leave the main page picture up until the Relay for Life walk.
Healthwise...Joey is still having headaches on a daily basis! These have been going on over 2 months now. The last 3 days his headaches have also caused him to feel nauseated. He has an appointment next Monday with the neurologist. PLEASE pray that we find the source of these headaches really soon! He feels bad so much of the time now. His grades are starting to fall because he is having trouble concentrating in school.
Any extra "hugs", prayers and well wishes are very much appreciated!!
Please see the information above about the Relay for Life walk. (above) This is a very worthwhile cause. Everyone knows someone who is touched by cancer. We would love to have anyone interested join us on May 5th! If you can't walk with us, please consider donating to this important cause. Every little bit of money raised helps to find a cure!
Martha
I almost forgot. I do have a little good news. :-) Joey's legs are doing really good. We have been gradually increasing the time he wears his braces during the day to prepare him to be able to wear them all night. Last night, for the first time, he slept in them. He did not quite make it all night, but he had them on from 8:00 PM until about 3:00 AM when he woke up with a stomachache/headache.
Friday, March 3, 2006 0:33 AM CST
WEDNESDAY-4:08 PM- Joey's headaches continue to be bad. This has been going on for a little over 2 months now. We thought they may somewhat be related to the neurontin. We changed that and the headaches have still not improved. One positive is the new med (Elavil) that he is now on is only taken at night so he is not real sleepy all day. He seems to be tolerating the new medicine ok.
Joey went to his 3rd "Cognitive Remediation" session yesterday. He goes on Tuesday's from 5-7. It seems to be going well. The therapist said he is working hard. The "mental math" homework he brought home this week is a little more challenging. I will be curious to see how he does with it.
The kids all went to be tested at Sylvan this last Saturday and started tutoring on Monday. They will be going on Monday and Thursday's. Joey did not really have any major weaknesses in any academic areas. He was pretty average on most everything. On one of his tests, he scored a 6th grade level on the words he was able to read accurately. He was pretty impressed with that. :-) That is one of his strongest skills. He can figure out most words that you give him. It may take him a minute to break it down, but he can usually figure it out. Joey actually went up during one of his breaks and was offering to help Jason on one of his tests. I have to watch him so he does not try to help the other kids too much. LOL
I should go for now. I will update again Friday with how his oncology appt goes. I am not sure when we will get the results back from the CT scan. The kids and I will be out of town all of next week for Spring Break.
Martha
Please continue to add extra "hugs" (above) and sign his guestbook. It really helps him to see that people are thinking about him when he is having a hard time. Thanks. Please keep him in your prayers that we may find the source of his headaches.
Joey has really had a rough week with his headaches. Adding the morning dose of neurontin has definitely helped his leg pain, but it has not done anything for his headaches. If anything they are worse. He is very sleepy all day now because of the added dose. If he does not get used to it soon, I plan to talk to the neurologist about it. He was put on antibiotics last Saturday because the doctor was thinking his sinus passages may be impacted and that would be causing his headaches and very elevated white blood count. So far that has not helped to make his headaches better either. I really feel bad for him! Please give him extra "hugs" and guestbook signings. Both of those have always made him feel better in the past!
On a positive note....His legs pains have totally gone away thanks to the morning dose of neurontin. We have started trying to get him adjusted to his braces again. The physical therapist suggested started out very slow and building. He is up to a little over 2 hours now.
Please see the information above about the walk. Down in the link section you can click on our team webpage, if you can help us out by walking with our team or by donating. Thank you so much for your help! EVERY donation, no matter how big or small, helps this important cause!!
Martha
PS. He, and the rest of the kids, go on Saturday morning to be tested for Sylvan. He also had his second session this week for the attention span study as a result of his treatment. So far it is going well and he likes it! :-)
Friday, February 24, 2006 0:56 AM CST
MONDAY 12:35 PM- The antibiotics helped Joey's temp go down the rest of the way. He continued to have real bad headaches all weekend long. The Nurse Pracctitioner from the HO clinic called this morning and his oncologist wants him to have a CT scan of his sinus'. He will do that next Friday, March 10th after his clinic appointment. In the meantime , his cultures from Friday did not end up growing anything. His oncologist strongly feels that his white count would not be that high unless there was a bacterial infection brewing somewhere. The thought is his sinus passages may be inpacted after all those infections he had back in the fall. He started 10 days worth of Augmentin (antibiotics) on Saturday night. One definite positive is when he was started on a morning dose of his Neurontin, his legs pains have pretty much disappeared. After school today, I plan to put his AFO's on him for short periods of time and hopefully gradually get him used to them again. He has his 2nd appointment tomorrow afternoon for the research study.
SATURDAY-2:03 PM- Joey ended up sleeping mostly ok once he was asleep. Today his temp has stayed low grade, but he has had a real bad headache all day. The doctor is supposed to call at some point today or tomorrow with the results from his blood cultures. I plan to ask him about the headaches.
FRIDAY 11:27 PM-I just wanted to add a quick update tonight to let everyone know that Joey is some better tonight. We spent 4 hours in the ER today. His white count was EXTREMELY elevated. His "normal" white count is about 5,000 and today it was almost 20,000. Most likely this is from him being sick. They took some blood cultures that they are expecting to grow something since his white count is so high. If any of this illness is bacterial it will show up in the cultures within 48 hours. He was given 2 shots of a wide spectrum antibiotic while we were there. He WAS NOT impressed with this; however, he is ALOT better tonight than he was last night. He is still complaining some and has some fever, but not anything that isn't managable. His oncologist has gotten in touch with the doctor that will be on call tomorrow to let her know to keep her eyes open for the results. Dr.Bowman will be on call personally on Sunday. He said he would call tomorrow sometime to let me know if anything was showing up in the cultures yet and to see how Joey does overnight. I will update again sometime tomorrow or when I hear any additional news from the doctor. He has been sleeping peacefully for about 30 minutes. Hopefully he can get a better nights sleep tonight!
PRAYERS NEEDED! Joey had a HORRIBLE headache this afternoon. When he went to bed he had a low grade temp. He has had a HIGH fever (104.5) since about 10:30 tonight. After an hour it had not gone down at all so I called the oncologist on call. She had me give him tylenol in addition to the motrin. She told me I could wait a couple of hours and if it did not come down to 102.5 or less that I would need to go ahead and bring him in. Otherwise I could wait til in the morning. It is currently 102.5 and he is right in the middle of having both motrin and tylenol in him! Right now I am going to see if I can get him to sleep for awhile. I will update again later if I end up taking him in or in the morning to let you know what is going on. He really feels HORRIBLE! Please keep him in your prayers!
Martha
Monday, February 20, 2006 8:52 AM CST
TUESDAY 11:04 PM-Joey had his first appointment with the therapist today. He will go once a week on Tuesday afternoons to learn new skills to better help him with attention type problems that can be long term effect from the chemo he received. He is still having problems with his legs and headahces. The physical therapist told me yesterday to contact the doctor and find out the source of his leg pain before attempting the put his braces back on him. I talked to the nurse practitioner this afternoon and she was going to get with the doctor and get back to me tomorrow morning.
Good morning! Just wanted to let everyone know that I had changed out a couple of the pictures. (the one on the main page and one of the ones on the photo page) The one of Joey and Samantha (at the top) was taken at her birthday party over the weekend. After the birthday party, we met Joey's old oncologist (Dr.Wilkinson) at El Chico for dinner. He was SO HAPPY to see her! We had not seen her since she left in September.
Unfortunately, he is still having headaches and alot of problems with his legs even though we have cut down the amount of time he wears his braces. I plan to get ahold of his physical therapist today. The leg pain initially started last Monday before he got his braces. (not real sure why) The braces have just made it worse. He cries alot both day and night with them. Please pray it gets better for him soon!
Martha
Tuesday, February 14, 2006 11:18 AM CST
FRIDAY- 9:54 AM-Joey is really having a hard time adjusting to his braces. He is really having alot of pain in his ankles and legs. The AFO's keep muscles stretched that are not used to being stretched. I called and talked to one of the PT's at Cooks and she suggested a way to cut back and get him used them them gradually. Please keep him in your prayers that we get some of his pain under control.
WEDNESDAY 4:06 PM-NEW PICS ON PHOTO PAGE!
Joey got his afo's this morning. So far he really likes them. He is wearing them for a few hours this afternoon to get used to them a little before he has to sleep in them tonight. I am curious to see how he sleeps in them considering he does not like anything touching his feet when he sleeps. He says that they are comfortable so that is a start. :-) A couple of days ago he started complaining that his feet and legs were hurting him. I did not really think too much of that since he has been doing his exercises and stretches most every day. Yesterday, he also started complaining that his right arm was bothering him. Not sure what is up with that. I will just add it to the journal the doctor asked me to keep and discuss it with him.
Happy Valentine's Day! This may be a long entry so you might want to grab a coke or a cup of coffee. :-)
Joey had his monthly oncology appointment on Friday. His counts were ok; however, they want me to keep a close eye on the headaches and sleepiness that he has been having. If they get more frequent or intense I will call back and get him back in sooner than March 10.
I will take him tomorrow morning at 8 to pick up his night time splints for his legs. We will go from there to physical therapy at 9. Hopefully we will be finished and he can be at school by the time he eats lunch at 11.
Joey has been invited to be in a research study thru the Life After Cancer program at Cooks. Some of the medicines he was on thru the course of his treatment can cause attention problems. He will start next week going once a week for 2 hours. The therapist will play games with him and do different activities with him to teach him techniques that he can use in school, on his homework and in his daily life. He will go once a week for 6 months. They will then test him again and they will test him again 6 months after that. I am hoping that the techniques he learns will really help him.
It also looks like all 5 of the children are going to start going to Sylvan Learning Center 2 days a week for 2 hours each time. They all have different learning needs, but it should definitely help all of them.
On May 5, we are doing a Relay for Life walk to help raise money for the American Cancer Society. It is a very fun and worthwhile event to attend. We all had a blast last year. The kids did not want to leave because they had so much fun with all the different activities. (face painting etc) We are looking for people to come up and help us walk as well as donations to our team's total. I can guarantee that if you want to attend you will not regret it! Please contact me if you have any questions at all about it and you think you might want to walk with our team. Look at the top of the page and you will see a picture of 2 cancer survivors. Every little bit of research benefits cancer fighters like Joey and Samantha. Cancer survival has come a long way, but the odds are still not perfect. Yes, Joey and Samantha both got the "easiest type of childhood cancer to treat" but there are still no guarantees that it won't come back. I can tell you many names of other people that have had the same type of cancer and lost their lives from it. Every bit of research that is done helps learn more about the different types of cancer and the best ways to treat them. You can sign up in the links below to be a member of our team (it is free to sign up) or if you want to donate to a great cause. No amount is too small. Every little bit helps! If you want to join us please understand that you do not have to be in great shape to do this. There are no minimum amount of laps that each person is required to walk. Everyone knows someone who has been touched by cancer. Can you help us raise money for a very worthwhile cause? As well as donating by using a credit card below, I can also take cash, checks or money orders. Thank you so much for your help. If you want more information about what goes on at the Relay, please email me and I can tell you more about it!
Martha
Friday, January 27, 2006 10:10 AM CST
Good morning! Sorry I have not updated lately. Things around here have been crazy! Joey's last HO appointment went fine. His counts were ok; however, his white count was a little higher than the doctor really wanted to see.
Last week was really crazy around here. The stomach virus went thru everyone in the house. Selina also came down with strep about 3-4 days after she finished her round with the stomach virus. Thankfullly this has been a much healthier week for everyone!
On Tuesday this week I took Joey to get measured for his leg braces. He was able to pick out several things (color and fabrics of strips and linings) to make his braces more kid friendly. We are scheduled to go back in 2 1/2 weeks to pick them up. The current plan at this point is to give the night braces a couple of months to see if they will fix the problem before deciding whether or not he will need daytime braces. He is actually very disappointed that he won't wear his nighttime braces to school and other places.
I think that pretty much covers what is going on around here. We actually have the next 2 weeks off without any appointments.
Martha
Thursday, January 12, 2006 4:17 PM CST
As of last Wednesday, January 4, the kids are all back in school. They got their report cards last week for the 3rd 6 weeks and most of their grades were pretty good. Between dr appts, physical therapy and being at home sick, Joey's absences are really adding up; however, his grades are good and the principal and others are aware of his absences and are being very understanding.
He went to physical therapy on Tuesday. It was decided that he needs to wear braces on his legs at night to keep his feet in the correct position while he sleeps. These braces will help to strengthen his heel cords and ankles. He has an appointment next Wednesday to get measured for his braces. He is not at all worried about wearing braces. If anything he is disappointed that he does not get to have the daytime braces and wear them to school. He won't go back to physical therapy until sometime after he gets his braces. We are to continue his exercises here at home.
He has his monthly oncology appointment tomorrow afternoon. As of January 23, he will have been off treatment for 10 months. Once he is off treatment for a year he will go to being seen every other month for bloodwork and an exam. At this point it looks like we will be moving to the Lewisville/Flower Mound area. There is a Cooks clinic there so that is likely where Joey will be seen instead of the clinic building here in Fort Worth beside the hospital.
For all those who have asked to see the PBS documentary that Joey is in, I am hoping to get those tapes made this weekend or next week sometime.
I will add a short update tomorrow afternoon after Joey's appointment.
Martha
Tuesday, January 3, 2006 2:36 PM CST
Happy New Year to everyone! I just wanted to get on and share our pictures from the zoo on Saturday. Our cancer warrior Samantha and her family met us at the Fort Worth zoo for the afternoon. Everyone seemed to have a great time! Did you know it was possible to get 8 hyperactive kids between the ages of 1 and 13 together to sit still for a picture?! LOL It probably did not hurt that they were all tired from walking around the zoo for 4 hours. There are more zoo pictures on the photo page. All of the kids seemed to really enjoy each others company! I think we may have a future romance between Joey and Sam. :-) It is amazing despite their age difference how well they get along! If you compare their sizes you would not know there is more than 3 years between them.( Joey was 8 in October and Sam will be 5 later this month) They are close to the same height and Sam actually weighs a little more than Joey (gotta love those steroids LOL)
The kids have all been enjoying all the sunshine we have had. Considering it is 84 degrees outside today the sun background seemed more appropriate than the snowmen. :-)
Joey is doing good. For now, he seems to be over his sinus problems. Hopefully that will last! :-) He does not have any appointments this week. He goes back next Tuesday to physical therapy. At that point we will find out if he needs braces on his lower legs.
If you want to see the PBS special that Joey was in, just let me know and I can get you a copy or loan you ours. (The previous entry has more information about it)
The kids go back to school tomorrow and most of them are ready. They are rather tired of each others company and ready to see their friends!
We plan to head to Houston this weekend to have Christmas with Dan's parents. Kids are not too disappointed that they have more presents to open. :-)
I have taken LOTS of pictures the last couple weeks, so if looking at pictures of my kids does not bore you...be sure to check back because the pictures will be changing frequently for awhile.
Martha
Tuesday, December 27, 2005 11:47 AM CST
Hi! I hope everyone had a Merry Christmas! We did. For the first time ever, we stayed at home with just our family The kids all had a great time! My parents sent us a check that we could use to buy some food from the Honey Baked Ham store. If you have never had one of their hams or turkeys, they are wonderful!
Joey's sinus' are some better. He is still a little stopped up and coughs fairly frequently unless he has breathing treatments. Hopefully soon we can get him feeling totally better and keep him that way for awhile.
I want to clear up a misunderstanding that some have had about the braces Joey may have to wear. Joey is not at all upset about it! He realizes that if he gets daytime braces then he will have to wear them to school and the kids will likely ask him questions about them. He is not at all concerned about this! With the daytime braces, he will still be able to participate in everything the other kids participate in at school. The main thing they will do is force him to walk the correct way. The night time braces are a little different and they would keep his feet in the correct position when he sleeps and therefore strengthen his heelcords. We will know more about this when he goes to PT the next time on January 10.
Now for the most exciting news of this entry. Joey was on a PBS documentary titled "Faces of a Children's Hospital". The special actually visited 5 different children's hospitals across the US. There were 4 parts to the video. Part 1 was about premature babies and the NICU. Part 2 was the oncology part. Part 3 was about childrens hospitals reaching out to the communities thru various programs. Part 4 was about babies/kids with heart defects. He was shown 3 different times during the oncology part. The first time he was walking down the hall pushing an IV pole.The 2nd time he was sitting in my lap (thankfully they only got my back) during an infusion and the last time Dr.Griffin was examining him. He looks a little different because when this was taped he was still on treatment and did not have much hair. Dr.Griffin and Dr.Eames were the 2 drs from Cooks that were on it. If you are interested in seeing it, we have a copy of it. If you want a copy of your own just let me know and I will copy it over to a video tape for you. It is possible that your PBS channel will be showing it, but you will just have to look it up by the title "Faces of a Children's Hospital" and see. Joey was pretty impressed to see himself on tv. :-) My email address is below if you are interested in seeing it. It is very informative and interesting!
Have a great week!
Martha.
Friday, December 16, 2005 7:48 AM CST
MONDAY-4:48 PM- We are home from the ER. Joey has a bad sinus infection AGAIN. Dan is out getting his antibiotic now. The ER dr wanted him checked in 3 days. I called his oncologist to touch base with him and he wants to see him personally instead of sending us to the pediatrician. So Friday morning at 8:15 he has an appointment with his oncologist. Please pray we can get him cleared up and he can stay well for awhile! Also we want him to feel better so he can enjoy Christmas! Hopefully things will be pretty calm (as much as they can be with 5 kids) around for the next several days and I won't have a reason to update until Friday after his doctor appointment.
MONDAY-10:30 AM- Joey feels really crummy today and woke up with a 101 temp. Dan is on his way home from work to work here for the rest of the day so I can take him to the ER to be checked out.
Good morning everyone! You might want to grab a coke or a cup of coffee before you start reading because this may be a long entry. :-)
Joey has had a busy week. On Tuesday, he went to physical therapy for the first time. It went pretty well. He had made some progress since he was evaluated. His heel cords are still very tight and he still walks on his toes unless you constantly remind him to walk correctly. We will go back to physical therapy on January 10. If he has not made any more progress when we go back then we will be discussing braces for him to wear. The daytime braces would basically not allow him to walk on his toes, but he would be able to do all other activities at school. The nighttime braces are different and would basically keep his feet in the correct position when he sleeps and help strengthen his heel cords. The big draw back to the nighttime braces is alot of times kids have a hard time getting comfortable enough to sleep.
His sinus' were real rattly and he was running fever from Tuesday afternoon- Wednesday evening. Yesterday, was his monthly appointment at the HO clinic. His counts were fine; however, he has a really nasty cough that has gotten worse even since his appointment yesterday morning. He was put on breathing treatments 3 times a day.
I also asked about the back pain he has had for the last week. The nurse practitioner said that it was very common for these kids to build up scar tissue after all the spinal taps they have. Once that happens and it gets cold then it causes them to hurt. She had us go for an xray to be sure there was not anything else there. (she was not really expecting anything) I have not heard back from it yet.
I am going to go watch a movie with him for awhile since the other kids are at school. They will be home in about an hour and a half and then my peace and quiet is over until Wed, January 4 at 7:30 AM. :-) I will update again if anything else happens.
Til next time....
Martha
For all those that know about Joey's brother Jarrett. He is doing alot better with his stomach problems since we adjusted his diet and he was put on Prevacid for his Acid Reflux.
Friday, December 2, 2005 4:54 PM CST
Hi! Sorry it has taken so long for me to update! I hope everyone had a great Thanksgiving. We went to Dan's brother's house in Allen (about an hour away) from Wednesday-Friday. There are new pictures on the photo page that were taken while we were there.
The picture above was taken by the person from the Leukemia and Lymphoma Society at the Light the Night walk on October 22. I just received it in the mail today. Within the next few minutes it will also be posted on Samantha's page.
Joey's sinus problems are some better, but he still has them. He started on Round 2 of Omnicef (antibiotic) at the beginning of the week. For some reason he is still periodically running a little fever. His next scheduled dr appt is on Friday, Dec 16. He will go to physical therapy for the first time on Monday, Dec 5.
The kids only have 2 more weeks of school before their Christmas break.At this point, we are not planning to go anywhere.
I took Jarrett to the doctor today and found out that he likely has acid reflux.
I think that about covers the highlights of the Fontenot House. Til next time...
Martha
Tuesday, November 15, 2005 3:29 PM CST
SATURDAY, NOVEMBER 19-Joey still continues to struggle with his sinus problems. He is still really stopped up and coughing alot. I have to call back on Tuesday if he is not pretty much "well". Thankfully his temp finally broke yesterday. I will have some new pictures to add once we get back home tomorrow evening. I got the results back from his educational testing on Thursday. It looks like the chemo is starting to have some effect on his memory and overall comprehension. She saw alot of the same things with joey that she has seen in other kids that have finished cancer treatment. At this point it has not really effected his schoolwork. She feels strongly that he does need occupational therapy in addition to the physical therapy. I will hopefully know more next week on whether or not he will be getting that as well. The kids are off all this next week for Thanksgiving. Sometime the following week the school counselor and I are going to sit down and talk about his testing results. Stay tuned for new pictures.
Hi! Joey had his monthly oncology appointment this morning. His platelets and hemoglobin looked real good, but his white count was very elavated indicating infection. His sinus passages were so stopped up they were swollen and his throat is raw and he is coughing some. His oncologist put him on some antibiotics to start tonight. Dr.Bowman said that if he is not pretty much well by Tuesday or Wednesday of next week that I need to call back and maybe bring him back in. His temp at 3:00 when I gave him motrin was 101.6. He has a bad headache but I am sure it is sinus related.
He also suggested the possibility that some of his recent aches and pains may be more from what his body is trying to fight right now. He suggested going back to only giving him his Neurontin at night for atleast the next week and if he is still having problems after he is better then add the morning dose back in.
The kids are looking forward to only having 3 more days of school before their Thanksgiving break. They are out all next week. We will go see my parents at their place in the country this weekend. We will spend Thanksgiving over in Allen (about an hour away) with Dan's brother, sister in law and all of the rest of Dan's family.
The kids all got report cards last week. Most of their grades were atleast acceptable. We unfortunately have some issues to work on both educational and behavioral. All of Joey's were good. (which is good considering how many days he has missed so far)
I need to get back to homework, which is rather time consuming with 5 kids each afternoon.
Martha
Dr. Wilkinson, if you see this message, would you mind emailing me at the address at the bottom of the page. Thanks a bunch! Joey was THRILLED when he saw that you had signed his guestbook!! We really miss seeing you at the clinic!
Wednesday, November 9, 2005 4:36 AM CST
Good morning everyone! Joey has been having trouble with his legs and feet quite a bit during the last week. After his neurontin dose got adjusted by the neurologist, he went 3 weeks with no complaints at all!!! I am not sure what is causing this. He has been up hurting half the night. I plan to call the neurologist today. He had given me plenty of medicine to start him on a day time dose in addition to what he gets at bedtime. Since he went so long without his legs hurting at all I don't feel comfortable starting him back on a daytime dose without talking to the doctor first. His monthly oncology check up and bloodwork is tomorrow morning. I will update again this afternoon or tomorrow when I know something else.
We found out yesterday that we are about to have child #4 with glasses. Jarrett failed his eye exam at school. Since his insurance does not cover the eye exam and glasses the wonderful nurse at the school is giving us one of the coupons she was given by the vision center at Sam's. Jarrett will get his exam and glasses FREE.
The kids all get report cards tomorrow. I think that about covers it for now. I am totally exhausted and am hoping to lay back down for atleast a few minutes before I HAVE to get up. (in an hour)
Please keep my aunt Elaine in your prayers. She had a stroke on Sunday. She is in the hospital in Austin. She started to come around some yesterday, but can still not swallow. Please also keep Jacob Duckworth in your prayers. I do not know him personally, but I have been following him for a very long time. He is in very critical condition. He is only 5 years old. His caringbridge site is www.caringbridge.org/fl/jacob .
Martha
Wednesday, November 2, 2005 4:22 PM CST
Hi everyone! Sorry it has been so long since I have updated. Everything here is going good. I want to thank everyone who donated to our Light the Night team. Our team raised almost $300. We all had alot of fun at the walk. The kids all had a blast. My kids were able to meet Samantha and her brothers for the first time. Joey and Samantha really hit it off. Joey and Samantha either rode together in the wagon or walked hand in hand with Selina. :-) Samantha cried when she had to leave Joey. He worried about her all weekend!
He is still fighting all this sinus junk. It all started about 3 weeks ago when he woke up with a sore throat and coughing and a 103 degree temp. The temp went away after a couple days, but the cough continued until the beginning of last week. He actually went 5 or 6 days without having to have cough medicine before bed and then Halloween night he started coughing quite a bit again. The drainage in his throat has been continual. The positive thing is he does not have any fever. His next scheduled appointment at the HO clinic is a week from tomorrow. If his cough gets much worse or he starts running fever I will take him to the pediatrician sooner.
When he went to the neurologist a few weeks ago, Dr.Markes suggested to give him all his neurontin as one dose at night before bed instead of giving it to him some in the morning and some at night. That really seems to be working well to control his leg and feet pain. He had given me enough med to add in a morning dose if I need to, but so far I haven't.
Joey was recently tested for occupational therapy and physical therapy by the therapists at Cook Children's Hospital. The occupational therapist decided that despite the fact he showed some weaknesses with his fine motor skills he was still very functional and it would be sufficient to do exercises with him at home to strengthen his muscles.
He is scheduled to start physical therapy as soon as they get approval from his insurance. His heel cords and hamstrings are very tight. Most of the time he walks on his toes. (which with his shoes on is not as obvious) Once he starts physical therapy, we will reevaluate his progress after 6 weeks.
I think that is all the major stuff going on here right now. The kids all enjoyed Halloween. Since we had been to 3 halloween parties, we decided to stay home and pass out candy. The kids really enjoyed that!!
Be sure to keep an eye out for new pictures every few days for the next several weeks. I have alot of new pictures. :-)
Martha
I will plan to update atleast by next Thursday afternoon after his next oncology appointment or if anything major happens sooner. (we hope that does not happen)
Friday, October 14, 2005 12:13 AM CDT
I just wanted to get on long enough to say....HAPPY 8TH BIRTHDAY JOEY!!! Please stop by his guestbook and say hello.
I will update more later on or tomorrow! Hopefully with new pictures! :-)
Please keep Samantha in your prayers! Her counts are very, very low right now and she could get sick very easily!
Please donate to our Light the Night team, 2 COURAGEOUS WARRIORS. Our team was set up to honor both Joey and Samantha. There is no minimum donation! EVERY little bit helps. I can take donations by cash or check. Our team website (below) can take donations by credit card. Thank you so much for any help that you can give.
Martha
Thursday, October 6, 2005 5:06 PM CDT
SUNDAY 1;58 PM- We are home from the ER. We were actually only there a little less than 2 hours. At this point it appears to be viral. His throat was red, but the rapid step test was negative. They did take some cultures just to be sure. He and I are about to lay down since we have been up since a little after 5:00.
SUNDAY AM- 6:05 AM- Joey woke up around 5:15 complaining of a HORRIBLE HEADACHE. I gave him tylenol. A few minutes later, I realized he was VERY HOT so I took his temp...103.1. He is a little stopped up a coughing a little occasonally and says his throat hurts. I am very likely going to take him in to be checked out this morning. This poor kid NEEDS A BREAK! I will update later when I know more.
Joey's spinal fluid/central nervous system is ALL CLEAR of leukemia cells. He has really had a hard time coming off the Ativan that they sedated him with. He was very dizzy, could not hardly hold his head up or walk, had a very bad headache and cried for about 3 hours before I finally got him to go to sleep for awhile. He has been a bit better since he got up. We are still not sure what is causing the headaches but atleast it is not a leukemia relapse. We go to the neurologist on Wednesday, Oct 12th about his headaches and peripheral neuropathy. Hopefully we will get some more answers on both at that time. The oncologist figured the neurologist would have some more tests to put him thru. I guess I will find out more about that on Wednesday.
Our Light the Night walk is 2 weeks from tomorrow. Please help our team and the Leukemia and Lymphoma Society by donating a few dollars. Every little bit helps!! We would also welcome walkers as well. You can sign up for either at the link below. If you have any questions about either donating or walking please email me at the email address below.
This has been a very busy week with Joey's appointments. Hopefully he just has the one on Wednesday next week. He has a HUGE pile of make up work after missing 3 days of school this week. ( Atleast the kids have a 4 day weekend for him to complete it ) Next Friday is Joey's 8th birthday! :-) We are still finalizing plans on what to do for it! We have a busy couple of weeks ahead getting ready for the walk. I unfortunately got NO fundraising done this week, but have alot of possibilities!
Thank you so much for the prayers! Please continue to pray that we get his nerve pain under control and also find out the cause of his headaches. Thank you! Please sign his guestbook and give him a few "hugs" above if you have a few minutes.
Martha
Monday, October 3, 2005 0:00 AM CDT
WEDNESDAY 4:20 PM-We finished Joey's educational and memory testing first thing this morning. After that we went straight to the HO clinic. His counts were fine, which means the bone marrow is still ok. Since he is having so many headaches, she wanted me to bring him back in the morning for a spinal tap to check his spinal fluid to make sure there is no leukemia hiding in it...which would mean a CNS relapse (central nervous system). His appointment is at 8 in the morning, but he can not have anything to eat or drink after midnight tonight. I will update again after I know something.
TUESDAY 6:18 PM- Hi! I just wanted to let everyone know that I talked to the oncologist this morning on the phone about Joey's headaches. She told me I NEEDED to reschedule Joey's appt from the 14th to AS SOON AS THEY COULD GET HIM IN!...He is going tomorrow at 11:00. Please keep him in your prayers that we may figure out what the cause of his headaches is. They are always bad anytime he lays down to sleep or right after he gets up. This makes sleeping difficult. The last several nights he has woken up crying from his head hurting. Unfortunately these headaches have been constant for the last 2 weeks now. Sometimes it just hurts a little and sometimes it hurts a lot! I will update when I know more. Please sign his guestbook if you get a minute. Thanks alot!
Hi everyone! This is going to be quick since it is so late. Joey has been having alot of headaches for about the last week and a half. I took him to the pediatrician on Friday and he did not see any obvious problems. He was started on some allergy medicine to see if that will help.
On a positive note....We found out a few days ago that Dan got a new job in Dallas. He will start on Monday, October 10. We will not move over that direction until the end of the school year when our lease is up. The kids are all excited! :-)
He is actually sleeping right now and I plan to do the same shortly. Please keep him in your prayers that we may figure out what is causing his headaches. Thank you!
Martha
Tuesday, September 20, 2005 1:21 PM CDT
Hi everyone! Joey is doing ok. He and I went to James' graveside service on Wednesday of last week. He actually did ok. He has had alot of periods since then where he talks alot about james and how much he misses him. Dr.Wilkinson was also at the service and she spent some time talking to Joey as well. The school counselor is also keeping a close eye on him.
His nerve pain is about the same. He is still having alot of problems hurting bad....especially at night. If you are interested in finding out more information on Peripheral Neuropathy (which is what they are almost sure he has) then just email me and I can email some back to you. There is a little information in the previous journal entry. I have been doing alot of research on it as well. We are very anxious to get him in to the pediatric neurologist to see if we can get him some relief.
This past Sunday, September 18th was the 3 year anniversary of Joey's diagnosis. It brought back alot of memories of what we were going thru this time 3 years ago. The future was so uncertain at that point and we were just beginning to enter the world of childhood cancer. Joey has been strong and overcome so much in the last 3 years. Thank you so much for all the support and prayers that we have received so far. Please continue to keep Joey in your prayers. Yes, HOPEFULLY we are finished with leukemia, but he is still going thru alot of long term side effects from the chemo that he was on for 2 1/2 years. Unfortunately, from what I have learned there is no cure for peripheral neuropathy. It is just a matter of figuring out the best way to control the pain.
I need to go for now. Take a peek at the photo page for some pictures of Joey and his new kitten, James Lee. :-) He named his kitten after his friend James that died. Joey and James Lee are VERY MUCH attached to each other! In fact this is the first day that Joey has had school since we got him and James has been walking around whining and looking for Joey.
Please be sure and look at the link about our Light the Night walk on October 22. We would love help walking and any donations to the Leukemia and Lymphoma Society are VERY VERY MUCH appreciated!
Please also look at the information above on Childhood Cancer Awareness Month and Chili's involvement in that. Joey has very much enjoyed looking at the peppers he has so far. Please take a couple minutes and decorate one for him, Samantha or any other child who has or has had cancer. It is free and does not take much time.
Thanks a bunch for your help and prayers.
Martha
Monday, September 12, 2005 4:32 PM CDT
TUESDAY 4:30 PM- I came online to add another quick update. I got some very sad news a few hours ago. Dr.Wilkinson called me and told me that James, Joey's good friend from the HO clinic and camp, passed away on Saturday. There is a graveside service in Waco in the morning at 10:00 AM and Joey and I are planning to go. Joey is taking it about as well as can be expected. Please keep James' family in your prayers during this difficult time! James was an only child.
I do have some positive news. I got Joey's appointments set up. His appointments with the psychologist for educational testing are Wednesday and Thursday, October 5th and 6th. His neurology appt with Dr.Markes is Monday, October 10th. His next appointment at the HO clinic is on Friday, October 14, which is actually his birthday also.
Hi! Sorry it has taken me awhile to get on and update after Joey's appointment. This may be a long entry so you may want to grab a coke or cup of coffee before you start reading it. :-) His actual appointment at the HO clinic went good. His counts were all good.
We are still working on getting his pain in his feet and legs under control. It has definately been better since he started back on the Neurontin about a month ago. Dr. Wilkinson called one of the neurologists on Friday while we were there and they both feel that Joey has "peripheral neuropathy." It is most likely caused by the chemo medicine Vincristine that he was on off and on for the whole 2 1/2 years. I have been doing alot of reading on it this weekend and the symptoms sound exactly like what he has been dealing with.....pain mostly starting off in the feet and legs...very temperature sensative....can be VERY painful especially at night...very sensitive to the touch. The bad news is that he will likely have to deal with this for the rest of his life; however, the pain can usually be controlled with Neurontin and other similar medicines.
He has also been referred to an educational psychologist at Cooks for some extensive educational and memory testing. Two of the things that can show up within the first year or 2 off treatment are learning problems and memory problems. Within the last couple of months there have been some things that we have noticed that are very uncharacteristic for him...having trouble remembering simple things and some trouble catching on to new concepts. This testing will do 2 things. It will determine if he is having trouble with these things now and even if he is not then we will have a baseline in case problems show up in the future. I will have called both the psychologist and neurologist and they are both supposed to get back with me in the next day or 2 with an appointment.
Please see above for information on Childhood Cancer Awareness Month/Chili's and also our Light the Night walk for the Leukemia and Lymphoma Society that is on October 22.
Thank you so much for any help you can give.
Martha, Joey and family
Friday, September 2, 2005 3:28 PM CDT
Hey everyone! I hope you had a good week. I have been meaning to update for the last few days, but things have been really busy. Let me first update the prayer requests from my entry last week....
Jacob is doing better. Over last weekend he stopped running fever and alot of the symptoms he was having disappeared. On Monday this week his parents met with the doctors who could not explain the improvements in his condition. They redid the tumor marker blood tests and they had DROPPED DRAMATICALLY from the chemo he had a couple weeks ago. They decided to cut off the DNR bracelet that had been on Jacob's arm for a week. Since the strong chemo he received shrunk the tumors so much they are trying the same thing this week to see if they can get rid of them for good! Please keep him in your prayers and go by his webpage and leave a message if you have time. www.caringbridge.org/fl/jacob
Samantha, our little cancer warrior, is doing better also. She spiked a HIGH FEVER (104.7) in the middle of Sunday night. She was immediately admitted to the childrens hospital in Dallas and continued to run very high fevers thru Tuesday evening. She was finally feeling better so the doctor finally let her leave the hospital yesterday (Thursday) to go home. (Her webpage addy is below)
We are all doing fine here. We have now made it thru 3 weeks of school and all 5 of them have made it EVERY DAY! Joey continues to be totally worn out every afternoon. He plays so hard at school. I think he wants so much to be "normal" that he over does it a bit and by the end of the day he is usually hurting. The Neurontin he is on twice a day (1 pill twice a day) really seems to help his bone pain. It has unfortunately not totally taken care of it, but I think we are definatelly moving in the right direction. I hope to hear back from Dr Wilkinson this afternoon sometime. I am assuming she will up his night dose to 2 pills instead of 1. (That is what she told me she would do if the current dose was not sufficient for him)
He goes back a week from today for bloodwork and a checkup. (it will have been 5 weeks)
I hope everyone has a safe and enjoyable holiday weekend. We are headed to Houston in the morning. We will be back on Monday evening sometime.
Martha
Thursday, August 25, 2005 9:35 PM CDT
Hi everyone! Tonight's prayer requests are not for our family. One of them is for a special 5 year old boy named Jacob. Jacob is a triplet and they also have another brother who is 7. Jacob was diagnosed with a rare type of cancer when he was 3 years old in February of 2004. His parents just found out that his cancer has spread uncontrollably yet again and he has only days left to live. The family has all been called in to say their goodbyes to Jacob. If you have a few minutes, please go by and sign the guestbook on Jacob's page. The family is understandably devastated! I can not even begin to imagine what they are all going thru! His website address is www.caringbridge.org/fl/jacob . If you want to see just how many people this little boy and his family have touched, just look at his guestbook. Since his dad's posting last night at 11:23 there have been over 800 new guestbook entries. (yes I counted).
Please also keep our little cancer warrior, Samantha in your prayers! Her counts are VERY VERY low right now and she is very susceptible to illness. Her baby brother was running very high fevers just a couple days ago. If Samantha starts running fever she will automatically get put in the hospital! Thanks.
Martha and family
Friday, August 19, 2005 3:41 PM CDT
Hi! I am sure everyone is wondering how the first week of school went. The kids all had a good first week. Joey came home very tired every day tho. Today he has even been dragging around all day. We are going to try putting him to bed earlier this next week. He really likes his teacher. He thinks it is real neat that he got the same teacher that Dustin had the last 2 years. He already knew her real well because he made copies with me all of last year after we pulled him out. He made a 102 on his first spelling test this week. :-) He unfortunately has a few behavior issues to work out, but with time those should get better. His teacher and I both feel that once he gets used to the routine of being in school he will be ok. He just started 2nd grade and has only had 7 weeks of public school before this week. I am making copies each Friday for Joey's teacher and the other teachers on the 2nd grade team. (same group of teachers I made copies for last year) Also when I was up there today the 6th grade teachers asked me if I would do theirs as well. I will do that on Tuesday mornings.
I think that mostly covers what is going on around here. Joey's next appointment at the HO clinic is not until Friday, September 9 at 1:30. We hope everyone has a great weekend!
Martha, Joey and the rest of the family :-)
Tuesday, August 9, 2005 9:57 AM CDT
Only 6 days, 21 hours and 45 minutes until the kids are officially back in school!! They have ALL reached the end of their limits! For the last week all they can come up with to do is fuss, fight , scream, holler and be extremely hyper! I have a feeling the next week is going to drag by really slowly! I think we all need a change of scenery! LOL
Joey has definately been doing better since being put back on Neurontin. He still complains some , but the medicine is definately helping him.
I also want to thank everyone who signed James' guestbook for his birthday. We talked to them on Sunday night and his mom said that James had felt really good that day. They were actually out at the park having a birthday party with family and friends when we talked to them! Please continue to keep them in your prayers!
Be sure to check out the new pictures. Unless something happens I will probably not update the journal entry again until Tuesday after I get them all to school. I may switch out the pictures again in a few days!
Martha
Tuesday, August 2, 2005 5:38 PM CDT
FRIDAY 5:55 PM- Just a quick note to let everyone know that Joey seems to be feeling a little better since we started him back on Neurontin. He seemed to be a little more rested last night and he did not figit around quite as much. He is still hurting some , but I think we are making progress.
Unfortunately I have some not so pleasant news. I heard from Rachel, James' mom, today and they just found out today that the cancer has spread to James' brain. A week ago today he started having terrible headaches. I have a favor to ask everyone who reads this.... James' 8th birthday is on Sunday. If you could take a minute to sign his guestbook for his birthday it would really be appreciated. Joey is supposed to call and talk to James during the day on Sunday. Since the cancer is spreading so rapidly I am not sure if there is going to be enough time for the boys to see each other one last time or not! Please keep James and his family in your prayers!
PIctures are now all updated. The picture on the main page was taken of James and Joey at the clinic back in March. I wanted everyone to know who I am talking about when his name is mentioned. I got the boys all matching hawaian shirts at Walmart the other night. They were on clearance and I only paid $2 a piece for them. Tho, Jarrett is still not convinced that boys are ALLOWED to have flowers on their shirts! LOL
Hi! GREAT NEWS! Dr. Wilkinson left me a message earlier saying that Joey is FINE! She said she would call me back tomorrow and give me the specific information (apparently it is a law that detailed medical info can not be left on an answering machine). After we talk tomorrow, Joey will also be started back on Neurontin (the med he was on during treatment that helped him so much). I will add an update tomorrow after I talk to her!
Martha
Monday, August 1, 2005 9:47 PM CDT
Hi! I just wanted to hop on here real quick and let everyone know about our day. His bone marrow looks mostly ok BUT there were some cells in his bone marrow that she could not tell if they were good cells or leukemia cells. Apparently there is one type of good cell that resembles a leukemia cell in the bone marrow. It takes a very specialized test to tell the difference. It takes about 48 hours to get those test results back. Dr W will call me as soon as she hears. She is really thinking that he may have neurological bone and nerve damage as result from one of the chemos he was on. As long as his test result comes back ok on Wednesday then he will be put back on Neurontin (the medicine that helped him so much when he was on treatment with all his bone and nerve pain). No, it was not pleasant to hear that he may have bone and nerve damage from the chemo BUT that it SO MUCH better than the leukemia coming back! His back is hurting him quite a bit from the procedure but that is to be expected for the next several days. He is sleeping peacefully right now. Probably has something to do with the meds I gave him and the med he got earlier in the day at the dr.....At some point exhaustion has to enter in as well.
OH yeah! I did find out that he may not have to get used to another doctor besides Dr Wilkinson! They are trying to convince her to keep working part time at one of the other Cooks clinics in the metroplex. I told her that if she does that I want her to let me know and I will bring Joey to her even if I have to drive!! I will update more when I find something out!
Martha
Friday, July 29, 2005 6:25 PM CDT
SUNDAY NIGHT- 7:40 PM- Just wanted to add a quick update. I found out earlier that James is having surgery tomorrow on a "narrowing in his throat." Please keep him in your prayers that he may come through this surgery safely since his overall physical condition is very poor because of his cancer. We are going to work it out soon for Joey and James to see each other one last time before James gets too weak and passes away.
Joey's appointment for his bone marrow aspirate and blood work is at 1:00 tomorrow. I am going to have to wake him up and feed him before 7:00 because he can not have anything to eat or drink for 6 hours before his procedure. I don't think we will know anything from his bone marrow until Tuesday, but I promise to post as soon as I know. I will atleast add a short update tomorrow evening to let you know how it goes tomorrow. Joey is really having a difficult time with things right now...between how he feels and one good friend about to die and his best friend moving away in 5 days. :-( That is alot for a 7 year old to deal with. Please continue to keep him and us in your prayers.
Hi! This is going to be a quick entry since we are about to leave for the movie Sky High. Joey has an appointment on Monday afternoon at 1:00 at the HO clinic for a bone marrow aspirate and some more bloodwork. Since he is having all the bone pain she just wants to be sure his bone marrow is still clear of leukemia cells. He still has a cold.
Please keep our friend James in your prayers He is now home on hospice and he is not quite 8 years old. Joey has been really worried about him this week.
Joey's best friend Ethan, in the pictures with him, is moving a week from today. Joey just has a lot going on right now and not feeling the best definately does not help him.
I will update more on Monday.
Martha
Monday, July 25, 2005 8:09 PM CDT
THURSDAY-11:23 AM-Good morning! Things here are actually about the same. Joey is still complaining that he aches all over most of the time. Dr.Wilkinson gave me some pain medicine for him and he has been taking that at night and his sleeping has been some better. He has still not been able to shake his cold. It has actually been worse the last couple days than it was even last week. He started running his low grade temp again yesterday. I talked to Dr.Wilkinson on the phone yesterday and she said if his temp goes up any time before tomorrow afternoon (when she is in the clinic) that I would need to bring him in there instead of taking him in to the pediatrician. If anything major changes, I will let you know.
Hi! I am pretty tired so this will be a short entry. His appointment went fine. The dr does not believe at this point that he is relapsing; however, if he is still having problems with bone pain then she plans to do a bone marrow test either next week or the week after. The appointment is for Monday, August 8th however I am supposed to call her next Monday and she may have me bring him in then instead. In the meantime , she gave me a presciption of tylenol with codeine for him. I also have to journal everything about when he is having pain and how long it lasts etc. He and I both NEED several good nights sleep. Thank you so much for all the prayers and guestbook signings so far! They are really appreciated!! The abnormal cells were still there but not any worse and not any more of them. The doctor's current thinking is that they are coming from something viral...probably the cold that he has. Til next time.... Please continue to keep him in your prayers that we may figure out the source of his bone pain! He is pretty uncomfortable at times.
Martha
Sunday, July 24, 2005 0:16 AM CDT
Hi! I just wanted to update real fast before going to bed. Joey has been running the same low grade temp he has been running since Wednesday afternoon. We have also noticed a few petichia (tiny pin point spots on the skin caused by capilaries leaking blood....usually caused my low platelets...that stop bleeding) At this point he does not have alot , but petichia and bruising is yet another sign of leukemia. The bone pain continues also. He has had a really rough few nights. He sleeps long usually until his tylenol wears off and then he is up. He has already been up once tonight. He woke up after only being asleep for about 45 minutes. He has been back asleep about 20 min and it is almost 12:30. We have decided to keep him in from church tomorrow. If infact the leukemia is back then he could get sick very, very easily getting around a large group of people even if someone has something as simple as a cold.
I want to thank everyone who has signed his guestbook and has been praying for him and us. His appointment on Monday afternoon is at 1:45 and I am not sure how long it will take. I know he will get alot of bloodwork done and also a full exam. I would also not be surprised if they end up doing a bone marrow aspirate to check his bone marrow for leukemia cells. (This is where a big needle is stuck right into the middle of the bone in his back)
I will update as early as I can on Monday.
Martha
Monday, July 18, 2005 8:08 PM CDT
WEDNESDAY- 9:00 PM, THURSDAY 4:45 AM- Joey has been running a low grade fever since about 3 PM today. He is still having quite a bit of bone pain. He is also complaining of a sore throat. Emotionally...sometimes he is fine with everything and sometimes he isn't. You can tell that he thinks about it alot just from what he says. He remembers what he has been thru very well and is NOT interested in going thru it again! However, tonight he said, "Even if my cancer is back, I will make it thru it again with the help of my mom, my dad and God." All the guestbook entries, "hugs" (see above) and prayers from everyone seem to really help him. He knows he is not in this alone!! :-) Dan and I are ok. I guess. The waiting is killing us. Atleast when he was diagnosed originally it all happened so quickly. We did not have a week to wait and wonder! It is very hard to see him not feeling well and also to think of having to put him thru all this again!! But, Joey is right. If he is relapsing, we will again make it thru with the help of our family, friends and God. Thank you so much for the continuing thoughts and prayers for him and us.
Btw, I put the red background up because that is Joey's favorite color. I also changed out the pictures again tonight. These were just taken yesterday (Wednesday) at a park over by where Dan works. Joey did not actually start running his temp until a couple hours after we came home. But just that few minutes that he played really wiped him out.
I also found out last night that James, Joey's friend from the clinic, is not doing well at all. They found out Friday that his tumors came back in full force. He now has a tumor attached to lymph nodes around his heart and lung. There is nothing more that can be done for him and he is now home on hospice. He is not even quite 8 years old yet. (He is a couple months older than Joey) This news is going to be very hard on Joey so please pray that he takes it as well as possible...especially considering his own situation.
MONDAY PM-
Joey did not have a good dr appointment today. His counts were ok BUT there were some VERY SUSPICIOUS looking blood cells on his slide. Dr.Wilkinson said that the suspicious cells are not leukemia blasts at this point, BUT it is not uncommon for them to go into leukemia cells. She has seen them go either way. He has also been having some bone pain which is another symptom of leukemia. I have to keep a journal this next week on when he is having the bone pain and how bad it is. We go back next Monday to get a full blood workup and exam. If there is leukemia blasts in his blood next Monday we will be starting chemo all over again. If the bone pain continues she will also do a bone marrow aspirate on him which is where they stick in big needle into the middle of a bone. There are 4 ways to relapse in boys. 1. leukemia blasts in the blood, 2. in the bone marrow, 3. In the spinal fluid or 4. in the testicles. If the leukemia blasts are found in any or all of the above it is considered a relapse. Joey is fully aware of what may be going on and is very nervous about it. Please leave him some positive messages in his guestbook and keep us all in your prayers!! Thanks!
Martha
Thursday, July 7, 2005 9:06 PM CDT
Hi everyone! Sorry it has taken me so long to update this page after we got back. We had a really nice 4th of July weekend. We were able to spend time with both Dan's family in Houston and some of my family in San Saba. Dan , I and the boys all got back on Monday evening. Selina did not get back until today. She was spending a few extra days in San Saba with my parents and her cousin Hannah. Believe it or not, there is actually nothing major happening around here with anyone. Everyone is basically healthy and just spending time enjoying the summer. Keep an eye out for new pictures. I will be changing them out every few days for awhile. :-)
Several people recently have told me how good Joey looks and that if you did not know what he had been thru the last 2 1/2 years, you would not be able to tell by looking at him now. :-) He looks really good. He does still have problems with his legs hurting occasionally, but his oncologist assured me that this was not anything to worry about. He is just trying to build up the muscles in his legs after going so long with not much activitiy. We actually have another 2 weeks before he goes back to the doctor to have his counts checked and have an exam.
I will update as things happen. If I go awhile without updating it just means that nothing major is happening. :-) (with 5 kids that is a good thing for nothing major to be happening LOL ...especially these 5)
Martha
Monday, June 27, 2005 0:03 AM CDT
SATURDAY 11:40 PM- Hi! I hope everyone is enjoying their 4th of July weekend. I am actually updating from Houston at Dan's parents house. We have been here since yesterday evening. The kids have had a busy 2 days playing with their cousins, Michael who is 7 and Luke who is almost 5. From tomorrow evening until Monday evening , we will be at my parents place in San Saba, Texas. (outside of Austin) My brother's daughter Hannah who is 7 will be there and the kids are very excited about that! Selina is planning to spend an extra few days there playing with her cousin. Despite their age difference they really enjoy each others company since they both only have brothers.
Please keep Samantha, our little cancer warrior, in your prayers this weekend. I caught her mom online tonight and she said that Samantha's blood counts are pretty low and she is off all chemo and unable to start the maintenance part of her protocol. She goes back on Tuesday , and hopefully they will be better.
I need to sign off for now. As you can see by the picture at the top...Joey lost his other top front tooth. You know me, I have taken plenty of pictures this weekend and will update the pictures once we are back home and I can upload them to the computer. :-) Hope everyone is enjoying their holiday weekend! Stay safe!
Hi!! Just wanted to pop in real fast and update you on the current happenings in the Fontenot house! :-) The kids are still enjoying their summer. Unfortunately, Dustin and Jarrett both were at the doctor on Friday with BAD ear infections. They are unable to swim until they get their ears rechecked a week from Wednesday. The other kids are all fine. Jarrett and Jason finish up summer school on Friday, July 8.
I also wanted to share something else with everyone that we are doing as a family. Back in the fall I heard about a group called Cancer Warriors. (link is below) The organization was set up to encourage kids ( warriors) as they are going thru some type of cancer treatment. Each child is assigned a "warrior angel" to send them cards and small gifts as they go thru treatment. The encouragment that we received from Joey's "angels" , Carrie,Theresa and Kim, meant alot to our whole family. It would really brighten up Joey's day when he would get mail from them especially when he was feeling bad! This last week we made the decision to be "angels" for another child. We were assigned a 4 1/2 year old girl named Samantha (link below-Her mom gave me permission to add her site to Joey's site) . She is being treated for the same type of leukemia that Joey was treated for. She lives here in the DFW area and is being treated at Dallas Children's. Please stop by her website and say hello and that we sent you. If you have a little free time, Cancer Warriors is a very good cause and it means so much to the child that is going thru treatment and their whole family. As of the other day I found out there are alot of children that are going thru some type of cancer treatment that are waiting for "angels" of their own.
We are headed to Houston on Friday morning to see Dan's family. We will be there until Sunday afternoon. From Sunday evening to Monday evening we will be visiting with my parents at their place in San Saba, Texas. We hope everyone has a safe and fun weekend. Dan is on vacation this week and we are just going to mostly be around the house getting some things done. Hopefully the kids will all be healthy this week and I won't have anything major to update Joey's site with until we get back next week. :-)
Martha
Friday, June 17, 2005 6:51 AM CDT
TUESDAY 3:27 PM- I just wanted to let everyone know that Joey's 3rd off treatment visit went well. His checkup went good and his blood counts were also good. They seem pleased with how he looks!
His next appointment at the HO clinic will be on Monday, July 18 at 3:15 with Dr. Wilkinson. For the summer months the HO clinic is requesting that siblings not be brought to appointments because it is already very crowded up there. If anyone reading this is willing to help me out for 2-3 hours that afternoon with some of the rest of the kids it would be very much appreciated. I am hoping I can find a couple people willing to help out so that no one will have to watch all of them. Thanks alot!
Good morning! I decided that it was time to update this journal entry since it has been 2 weeks. :-) Everything here is going good. The kids have been busy enjoying our new pool. They all love it and always eat and sleep real good after swimming. The kids have been busy doing the summer reading program at the library. We have also gotten a zoo pass that we have used a couple of times. We recently found a park over in Arlington by where Dan works that is real nice also. There is a playground, a pond with ducks in it that you can feed, a basketball court and alot of room to run and play. We have figured out that it is a good place to meet Dan during his lunchbreak for a picnic lunch.
Joey has been feeling pretty good for the most part. He has a little cold right now but nothing major. He seems to be getting stronger everyday. I think all the time he is spending in the pool is definately helping him. He goes in on Monday morning for his monthly check-up and bloodwork at the HO clinic. It sure has been WONDERFUL to not be spending so much time sitting in a doctors office. We are slowly getting to the point where he is feeling good more often than bad. He definately still has aches and pains periodically, but Dr. Wilkinson said that is normal and probably will be til he is off treatment for a good year. He also tends to tire out alot easier than most 7 1/2 year olds which is normal for what he has been thru also. He has really been eating well for the last month. He is eating most anything and alot of it. Even for the year that we had him before he got sick he did not eat as well as he has during the last month. He definately didn't eat that well when he was on treatment. He is excited about going to 2nd grade in August. Last night he read a story for 3rd and 4th graders that I had gotten off the internet and he read it EASILY.
The other kids are all fine also. Jason has a cold right now, but has just had to miss one day of summer school.
Dustin got stitches under his eyebrow a week ago Tuesday and got them out this past Monday. It seems to have healed up nicely and he is glad to be back playing in the pool every day.
Selina had her 10th birthday last Saturday, June 11. She really seemed to have a nice time. She had some friends over to swim and play on Saturday morning, We then had pizza and birthday cake and headed to the zoo for the afternoon. She got to end her day by getting a phone call from her older sister Jessica, birthmom Melanie and little sisters Tricia and Desiree. (They live in New Mexico) She seemed to really enjoy her day.
Jarrett is doing fine. He has had a rough week, but I think he is on the mend. It started out with a sore throat and cold and then that got better but he had a rash covering his chest , stomach and back for about a week and now he has a cold again. His rash is some better and he went back to summer school today. He had the classic symptoms of Fifths Disease. Of course we won't know for sure that's what it was unless someone else breaks out which could still happen for like another week. For anyone worried about being exposed to him he was only contagious a week ago Monday-Wednesday. Once the rash showed up he was no longer contagious, tho he looked bad and itched ALOT!
I better end this. Joey is up and wanting breakfast! :-) We hope all the fathers out there have a HAPPY FATHER'S DAY!! I will update again after his appointment on Monday. (actually I may let him do the update since he will likely not bore you with such a long update. :-) ) Be sure to check back very frequently for new pictures. During the summer I will probably be updating the pictures alot more than I do the journal entry because we are doing so many things that are fun.
Martha
Thursday, June 2, 2005 4:46 PM CDT
Hi everyone! I have had some people ask me how James is doing. I had not heard from Rachel, his mom, in over a month , but I finally got an email from her today. James had his surgery and has recovered well from it. She said that he is feeling really good. He has a CT scan scheduled for tomorrow at Cooks. He is looking forward to attending Camp Sanguinity in a few weeks.
Everyone here is doing good. Tomorrow night some WONDERFUL members at Woodmont (where we attend church) got together and worked it out for Dan and I to have a night out WITH NO CHILDREN!! We are being treated to dinner, a movie and a night at a bed and breakfast. There are 5 families that have each offered to each watch one of our kids for the night. The kids are all looking forward to it as well! Thank you SO SO MUCH for all those who are helping to make this possible!!! It is very much appreciated!!!
I will update again next week sometime unless something major happens around here before then.
Martha
Tuesday, May 31, 2005 8:07 AM CDT
WEDNESDAY NIGHT/THURSDAY MORNING- 12:16AM- Just wanted to let you know that Joey is feeling much better. Be sure to keep an eye on his "blooming basket" (above)....
Good morning! We had a really nice time in Houston this weekend. We got to spend quite a bit of time both with our family and friends. Unfortunately, Joey came home sick. He said he had a headache right before we got home. He acted ok so we did not think anything of it. We figured he was overtired from our busy weekend. He went right to sleep, but was back up within 30 min- an hour. Since about 12:30 AM his temp has been around 101. Last night he was complaining that his stomach was hurting but he has not gotten sick at all. The current plan is to have him checked out in the ER this evening when I have to take him up to get his staples out. Please keep him in your prayers. He is really feeling pretty crummy!
Martha
Tuesday, May 24, 2005 3:05 PM CDT
Good afternoon! Sorry it has taken me so long to get around to updating after Joey's appointment yesterday. Joey's appointment went good. His counts were excellent and his chest xray came back looking good as well. The current thinking on the pains he is having is his muscles just are not used to the increased activitiy level. During the 2 1/2 years that he was on treatment, he was not able to do all the normal running and real active things because of all the problems he had with his legs from the chemo. Dr. Wilkinson said that it would probably take about a year to get his body to where it should be for his age (both in being able to fight off normal infections and building up his muscles and strength) I think we are going in the right direction. He seems to be getting stronger. His legs are getting some muscles in them and he does not seem to tire quite as easily. His eating has REALLY IMPROVED. He has eaten more in the last month than he has ever eaten since we adopted him 3 1/2 years ago. (both in amount and what he is willing to try) His color is really good also. The entire way thru treatment his hemoglobin stayed mostly in the 10s (normal is 11-13) thus causing him to appear a little more pale. The last 2 months since he has been off treatment it has been over 13 both months. We (the dr and I) are currently watching a couple of strength issues with his legs. If they don't sort themselves out soon he may need to go to physical therapy for a few months.
His head where his staples are, is finally looking better. The dr and nurse practitioner had both told me yesterday that a little drainage was ok. I really have not seen any today and it does not seem to be hurting him like it did over the weekend. I will take him in on Friday evening to get them removed.
I think that about covers our news here. The rest of the kids get out of school for the year at 10:15 on Thursday morning. We are planning to spend the holiday weekend in Houston.
Martha
Saturday, May 21, 2005 8:20 AM CDT
SATURDAY-8:41 PM- BAD NEWS- My poor 7 year old is having a very rough week. About 3:30 this afternoon, he was playing tug of war with Jason in his room (using Selina's jumprope) and he fell backwards and hit his head. 5 hours later and 5 staples later we are home.
GOOD NEWS- Joey DOES NOT have the chicken pox. He will go to his appointment at the HO clinic on Monday as planned.
Martha
Friday, May 20, 2005 1:15 PM CDT
FRIDAY- 7:54 PM- It looks like some of the first spots that Joey got this morning are starting to blister up. If he infact has the chicken pox then he will not be able to go to his monthly oncology appointment on Monday. His doctor said that if he blisters up this weekend then he will not be able to have his monthly appointment until he is all clear. If his fever goes up then we will have to go to the ER. He has had some real concerning bruising show up also. I am really hoping we are able to go to his appointment on Monday and get a cbc done as well as his chest xray.
Hi! It appears Joey may have the chicken pox. He has quite a few suspicious looking spots that started showing up a few hours ago when we were at the school. His chest is still bothering him off and on. If he has the chicken pox he will not be able to go to his monthly appointment at the HO clinic on Monday for his bloodwork, exam and chest xray (that his dr ordered to see if she could figure out why he was having the pains in his chest). I will post later on when I know for sure.
Martha
Sunday, May 15, 2005 6:06 AM CDT
UPDATE-MONDAY-4:37 PM- Just wanted to let everyone know that things here are about the same. We did not go into the clinic today, but I did talk to Dr.Wilkinson on the phone about 11:30. We are right now assuming that somehow he pulled a muscle or there is some other minor inflamation. I have to give him motrin every 6 hours for the next 2 days. He has his monthly appointment next Monday morning. At that point he will get his regular monthly check up and also a chest xray. If things get any worse between now and then we will go in sooner. (increased pain, breathing problems or his temp goes up) I think that about covers it for now. :-) I will update periodically this week to let everyone know what is going on with him. I will probably change out atleast the pictures on the photo page later on today.
Good morning! I just wanted to let everyone know that Joey has not been feeling too good the last couple of days. On Friday afternoon, he started complaining that the left side of his chest hurts. He also has had a low grade temp. I can not see anything that would be bothering him and he does not have any obvious congestion that would cause his chest to hurt. Unless something changes, I will likely be taking him in to the clinic tomorrow. Please pray that he feels better soon!
If you are interested in the journal entry about the Relay for Life, it is on last Monday's. We still have a few more Relay pictures to post. After I finish the Relay pictures then I have pictures from our visit to the park a couple days ago.
I will update when I know something.
Martha
Monday, May 9, 2005 2:09 PM CDT
Hi! Sorry it has taken me so long to update after the Relay For Life on Friday night. We really all had a great time! I would highly recommend you go if you ever have chance! The Relay officially started at 7:30 PM. There were a ton of survivors to walk the first lap, but Joey was the only survivor that was a child. He really stood out since he was the only child in the purple survivor shirt and hat that they were all given. He got tons of attention (which anyone who knows Joey, knows that he did not mind at all :-) ) At 9 PM the lights were dimmed and there was a special program to honor those who had died fighting cancer. Everyone took a lap around the track with the dimmed lights. Around the entire track were luminary bags that either said "in honor of" for someone still fighting or who had fought or "in memory of" for those who had died from some type of cancer. It was very touching and it even made an impression on all the kids...especially Joey. There were a ton of activities to keep everyone busy. We stayed until about 11:30. Next year we are hoping to have more walkers for our team. We will also take a tent so whoever gets sleepy can have a place to sleep. I took alot of pictures so keep an eye on our site cause they will be changed out pretty frequently until I get thru them.
Joey is feeling pretty good. His legs hurt him quite a bit this weekend after all the walking and running that he did on Friday night. Joey, Jarrett and Selina all have a touch of a sore throat, but they are all acting fine and no one has fever.
Several have asked me what is going on with James. I really appreciate all the concern. Unfortunately I do not know anything. All I know is he was supposed to have surgery last Monday, May 2 to remove his tumors. Apparently he did not have the surgery but that is all I know. I have emailed his mom and hopefully will hear something back from her soon. I will update when I know something. We really appreciate the prayers and kind thoughts for them as well as Joey.
I think this is supposed to be a light week for us. ( I need one after last week :-) ) I will update the homeschool entry probably tonight and the pictures probably tomorrow.
Martha
Saturday, April 30, 2005 8:47 PM CDT
Hi! I just wanted to post some pictures (on the photo page) of Joey riding his bike today. During the last couple of weeks he seems to be getting alot stronger. I do not remember any times while he was taking chemo that he spent so much time outside playing. The entire way thru chemo the slightest little bit of "normal" activity would have him crying that he was sleepy and wanted to take a nap or his legs would be hurting so bad we would have to get the pain med out. He is building up some nice muscles in his arms and legs and seems to be growing taller and gaining weight.
He is really looking forward to next Friday night, May 6. Our whole family will attend the FW Relay for Life put on by the American Cancer Society. It runs over night from 7PM-7AM. I seriously doubt my children will make it all night. Dan and the kids will likely all come home at some point to get some sleep. :-) Since I am the one who set up the team and I don't have to work on Saturday then I will probably stay up there as long as we have walkers there for our team. That being said....If anyone reading this is interested in helping us walk, it would be very much appreciated!! If you would like to walk, but aren't sure about staying all night...you don't have to. You are more than welcome to come and go whenever you want to. The survivors lap that Joey and other survivors will be walking in is at 7PM. There will be all kinds of activities for all ages. My kids are all looking forward to going. :-) If you want to help, but don't think you will be able to walk, we have a donation page set up. (link is at the bottom of the page under the link section) Please don't feel like you have to give alot. Every little bit is very much appreciated!!! If you have any questions at all about the walk, please send me an email (my address is at the bottom of the page ) The link at the bottom of the page will also get you to where you need to sign up if you want to walk with our team. Joey has been busy doing some fund raising for our team.
Unfortunately there is a negative part to this entry....Joey's friend James is having surgery on Monday to remove as much of his tumors as they can get to. The chemo they have had him on did not do anything. Unless something has changed that I am not aware of, there is not anything else they will be able to do for James other than the surgery. He is only 7.
Unless Joey gets sick, he does not have any more appointments until his monthly check up and bloodwork on May 23. If I don't post anything before then. then I will atleast post something next Saturday to let everyone know about the walk and post some pictures. :-)
Martha
Monday, April 25, 2005 2:46 PM CDT
Good afternoon! Just wanted to let everyone know that Joey had his first offical off treatment visit to the HO clinic. It went great! His counts are WONDERFUL!! His liver function numbers were actually lower than "normal" so Dr.Wilkinson increased his by mouth ringworm med from 2 days a week to 7 days a week. Since he is now off treatment she feels like the ringworm on his head will clear up within the next 2 weeks, but he will stay on the medicine for a few weeks after that to be SURE it is TOTALLY GONE! He will go back in 2 weeks (May 9) , but just long enough to get a blood test done to check his liver function levels and then we will leave. His next off treatment exam and cbc are Monday, May 23. He seems to feel pretty good for the most part. He has a little cold, but other than that is ok. He seems to be getting stronger every day.
Please continue to keep Joey's friend, James, in your prayers. (webpage address below) He is being treated for Wilms tumor of the kidney and is not doing well at all. The last couple of months the doctors have been trying one last chemo on him to see if they could find SOMETHING to shrink the tumor. His parents just found out that it did not work! James will have surgery on Monday, May 2 to remove as much of the tumors as is possible. James is 7 1/2 years old.
Martha
Friday, April 22, 2005 2:03 PM CDT
Hi! I posted some new pictures on Joey's photo page yesterday that were taken on April 9, when we took Dustin to play putt putt golf for his 10th birthday. Things with Joey are still basically the same. He still has a sore throat ( he has had it almost 2 weeks now ) . I had him at the pediatrician's office on Tuesday and his throat was red but not red enough to be strep. He figured it was just a cold and told me to watch him closely for fever. At that point his ears were "totally clear and healthy". When we were at the school this morning he was messing with his right ear and I had the nurse look at it. The ear drum is still fine but he now has a pocket of fluid in it. The fluid is probably where the pain is coming from. I just hope it is not trying to get infected. On to a more serious note...
Joey's friend James (link at the bottom of the page) is not doing well at all. He has been on a last chance chemo for the last couple of months. They found out on Thursday that the chemo did not work. He will have surgery on Monday, May 2 to remove as much as the tumor as they can. Please keep him in your prayers! He is only 7 years old! Joey is aware of what is going on and starting to ask more questions about what is happening to James. I can not even come close to imagining what his poor parents must be going thru. He is an only child. It really helps to put Joey's situation into perspective.
Assuming Joey does not suddenly start feeling worse, we are planning to go to Houston for the weekend to see Dan's parents. We will leave in the morning and come back on Sunday night sometime. Joey has his first off treatment exam and bloodwork scheduled for Monday morning at 10:45.
Martha
Wednesday, April 13, 2005 6:18 PM CDT
Hi! Nothing has really changed around here. Joey is still complaining of a sore throat. It has not seemed to get worse, but it has not gotten any better either. We are mostly hanging around the house so he does not get too tired out and make himself sicker. (When he is a little sick and he gets real tired out it always makes him alot worse!) He did have a follow up appointment with the surgeon this morning to check his port site....The doctor said it healed up real nicely and released him. He won't have to go back to the surgeon unless he relapses and needs another port put in! We hope that does not happen! NEW PICTURES ON THE PHOTO PAGE!
Martha
Monday, April 11, 2005 9:02 PM CDT
Hi! We all got over the stomach bug last week. Everyone felt really good on Saturday. Joey woke up on Sunday morning with a sore throat and has complained of one since. He had a touch of fever with it tonight. I gave him his cold med and motrin and he is still not sleeping that great! If he gets any worse then he will have to go in to the clinic. I will update if anything changes.
Martha
Friday, April 8, 2005 5:59 PM CDT
Good evening from the Fontenot hospital! I think we are making some progress with most everyone's health. The stomach bug has officially hit everyone in the house this week as of about 7 PM last night. Jason and Selina each missed 1 day of school and Jarrett and Dustin each missed 2 days of school. Jason still does not feel the best, but he is obviously alot better than he was last night. Joey was sick on Monday and Tuesday but still obviously does not feel great. I am guessing it is just taking him longer to shake this since his immune system is not the best! I just hope when he does finally shake this that he can stay well for atleast a few days. Until we can start keeping him well for more than a day or 2 at a time we will probably be a little more careful not to get him around someone that we know is sick!! (Though it is pretty much impossible when the sickness is in your own house like it was this week!!) His next appointment at the HO clinic is Monday, April 25 unless he starts running fever before then!! Til next time....
Martha
Be sure to check out the new pictures on the photo page!!
Wednesday, April 6, 2005 4:59 AM CDT
Good morning from the Fontenot Hospital! Jarrett woke up a couple hours ago with the stomach bug the other kids have had. I am going to attempt to go back to sleep for a little while before I have to get up. I have been working on Joey's page for the last couple of hours. I made the party entry a separate entry so I could keep it up a little while longer. (see above) I have changed out the photos on the photo page. I am going to leave the picture of Joey and Dr.Wilkinson up a little longer. Joey told me that he really likes the picture and thanked me for putting it on his page. :-)
I have decided to keep this page going for probably 6 more months or until things are a little more stable with him and he is starting to build his immune system up some and is not sick as much. I will update more later on with how Jarrett and Joey are both doing.
Monday, April 4, 2005 1:50 PM CDT
TUESDAY 2:04 PM- His stomach started bothering him yesterday around lunch and that is just now starting to get a little better. He is having alot of sinus problems on top of that. His temp has not gone back up yet today, but if it does he will have to go in to be checked out. Dustin is also home for the second day. I took him to school this morning and he made it until 9 when they called me to come pick him up. He does seem to be feeling a little better this afternoon. Tomorrow is his 10th birthday and we don't want him to be sick! Selina made it back to school today after being sick yesterday and apparently she has been fine since they never called me to come and get her.
We have a little too much excitment going on around here today. I started out the day with Joey and Dustin both sick. Dustin started having stomach problems last night and Joey's sinus' are getting bad again as well as his temperature is slowly rising. The school nurse called about 8:25 AM and said that Selina had an upset stomach as well. The 2 kids I already had here were not thrilled with having to leave the house to go pick her up. Luckily the nurse was nice enough to bring Selina outside to me so that I did not have to take the boys in. Hopefully, Dustin and Selina will both make it back to school in the morning. Joey had a touch of a stomach problem a few minutes ago and hopefully that won't get any worse. As it is, it looks like Joey and I will be spending the evening in the ER like we did last week. I have Joey here in the bedroom watching tv and the other 2 are in the living room. Joey is so funny. He is so worried about getting what they have that every time one of them comes in the room he covers his head with the blanket so they won't breathe on him. :-)
I should go for now. My 2 healthy children will be home from school soon and then the fun of doing homework will start!
Martha
Thursday, March 31, 2005 3:12 PM CST
Just wanted to let everyone know that Joey seems to be feeling better. His temp has gone down and his congestion is some better. We had an appointment at the clinic this afternoon to just to check him over after being sick. The dr feels that the headaches he has been having are related to all the sinus pressure that he has. He is supposed to stay on his sinus med til he is cleared up and he was also put on medicine to clear up his mouth sores that he has developed over the last couple days. He should be in good shape for his party by Saturday. The real ironic thing about our ER visit Monday and our clinic visit today is we were not supposed to have to be seen again until April 25. Hopefully we will have the next 3 weeks off. :-)
He is getting rather excited about his party and we are looking forward to seeing all our family and friends that will be there!! If you are wanting to come and need directions or have any other questions please feel free to email me. My email address is at the bottom of the page.
Martha
Monday, March 28, 2005 11:06 PM CST
TUESDAY 3:22PM- Joey is still running a temp between 101 and 102. He is pretty congested sounding also and complaining of a headache. I have to call the clinic back in the morning and we may have to end up going in.
We are home from the ER. It appears to just be viral. I have to call the HO clinic tomorrow to check in. If he is still running fever in a couple days we will have to repeat the blood cultures. His temp stayed around 102 all evening. The doctor said he is very contagious and this could last as long as a week or 10 days. We hope he is well before his party on Saturday. We are heading to bed to hopefully get some sleep tonight. I will update at some point tomorrow.
Martha
Monday, March 28, 2005 0:34 AM CST
MONDAY 3:55PM- Joey woke up from his nap earlier with a temp of 102.3. As soon as I can I have to take him in to the ER to be checked out. I will update when we get home.
Hi everyone! It looks like we are getting close to having his first off treatment visit to the clinic for being sick. His sore throat has gotten worse and he is now starting to cough real bad. He has a low grade temp. If his temp goes up we will have to go in for the usual counts, blood cultures and antibiotics. I will very likely atleast call and talk to Dr.Wilkinson about his cough! Please keep him in your prayers! We have a very busy week ahead planning for his off treatment party that is on Saturday. We are currently expecting around 75! The kids are all very excited!
Be sure to check out all the Easter pictures. I have a bunch so I will be changing them out pretty frequently this week!
Martha
Friday, March 25, 2005 7:01 AM CST
FRIDAY-2:54 PM- I just wanted to give credit to Holly Gianotti for making such a cute background and allowing others to use it! I just showed my kids and they were thrilled! Thanks Holly! (Holly is on an email list that I am on.) I hope everyone has a fun Easter weekend.
Good morning! I am sorry I am just now getting around to updating since Joey's off treatment visit. It went real well. All chemo was stopped and we have since thrown it all away. (see pictures :-) ) He is still on Bactrim (antibiotic) for 3 days every week and also on his by mouth med for his ringworm. We will still be going in every month for a check up and counts. Also until his dr is sure what his counts are going to do off treatment, we also still have to report any fever or other illnesses like we have the last 2 1/2 years. Once the dr is comfortable that his counts are staying stable then he will slowly be gotten into seeing the pediatrician more. Even though he is not taking treatments anymore, we will still have to take him periodically for counts and an exam to make sure the leukemia does not come back. The checks will get less frequent as time goes on but we will never totally be finished going there.
Joey started complaining that he was not feeling good yesterday afternoon and was still complaining when he first woke up this morning. He says that his stomach hurts and his throat and sinus' are starting to bother him again. So I guess we will wait and see what happens with all that. He has just a touch of fever at this point.
Also, Joey may be in for some genetic testing. I found out about Joey's birthfather having a brain tumor. Apparently alot of brain tumors and leukemia as well as some other types of cancer are very genetic. His doctor wanted me to find out specific information about any types of cancer on either side of his birthfamily. She is going to contact a friend of hers who specializes in genetic cancers and see what she suggests. I will post more on that when I know more myself.
Things are real busy around here trying to get ready for Joey's off treatment party that is a week from tomorrow. If you have not received your invitation please contact me at the email address below for the details.
Martha
Tuesday, March 22, 2005 7:52 AM CST
Hi! Just wanted to check in. Everything is fine. There is just TONS going on here right now. I will update more after Joey's dr appointment tomorrow. Only 2 more doses of chemo...tonight and tomorrow night.
Martha
Wednesday, March 16, 2005 4:00 PM CST
SATURDAY AM- 12:53 AM- I just have a quick update! I know it's late, but I am very happy to report that Joey just took his LAST dose of Methotrexate (his weekly chemo) He only has 5 more nights of his 6mp left. :-) I also wanted to let everyone know that the rest of the invitations are addressed and stamped and will go out in the mail on Saturday..If you don't receive one by the beginning of next week, PLEASE contact me and I will get one to you!! As many as I intended to pass out, it is highly possible that I may have missed someone when invitations were getting passed out and mailed!
THURSDAY 11:58 PM- NEW PHOTOS IN PHOTO ALBUM!!! Joey is THRILLED with all the hugs he is getting! :-)
THURSDAY-7:04PM- Joey's back has felt better today. He has had a touch of a stomachache all day for some reason. I have had him laying on one couch most of the day. This evening my 9 year old monkey named Dustin was hanging from a flimsy tree branch and the tree branch broke and Dustin fell scraping up most of his back. Needless to say he is not in a very good mood either and is laying on the other couch with ice on his back. I think I should have chosen nursing instead of teaching for a career. I have had plenty of practice! :-) On a positive note, the weather was beautiful today and my 3 middle children were out most of afternoon and early evening...bike riding, rollerblading, mowing the yard, and playing in the leaves...Selina also chased the soccer ball around for awhile. I got tons of good pictures of them. Jason was out periodically as well, but he is not as thrilled with getting his picture taken as the other 4 are. :-) Hope everyone had a Happy St Patrick's Day!! ( That is why I put up the green border ) Either tonight or tomorrow I will plan to put more of Joey's surgery pictures up from Monday. Have a great night!
Good afternoon! Joey seems to be feeling a little better today. I have not had to give him any of his prescription pain medicine today. A dose of motrin has been more than sufficient! He has also been up playing some today instead of laying on the couch. His next appointment , for his end of treatment bloodwork and consultation, is next Wednesday at 8:30.
If you did not notice , there is a couple of new things at the top of the page. Joey now has a "hug counter". If you want to give Joey a "hug" just click on the link under it. Under the "hug counter" is a link where you can hear Joey's Songs of Love song. He is very proud of his song since it tells all about him! :-)
JAMES UPDATE-3/16- I do not know too much new on James other than the fact that he is still in the hospital. He was admitted on Monday afternoon for fever. I called a few minutes ago and they said he was still there, but I was not able to get anyone to answer the phone in his room. Please keep him in your prayers that he may be released very soon!
Martha
Monday, March 14, 2005 11:01 PM CST
TUESDAY 2:00PM- I just had to add another short update. I just heard from the doctor and there are NO LEUKEMIA CELLS PRESENT in either his bone marrow or spinal fluid!!! He is in COMPLETE REMISSION!!! Joey's back is still hurting him alot today, but Dr.Murray said it was completely normal after the procedures he had done yesterday!
Hi everyone!! Sorry it has taken me so long to update today! Everything went fine. We got to the hospital around 7:10 AM. He unfortunately did not get taken back for surgery until 10:30! He was in recovery by 11:30 and on the way home by a little after 12:30. He told the anesthesiologist that he was a "big boy" and "did not need giggle juice (the med they give them to relax so it won't be so hard for them to leave their parents) and that he could walk there on his own." That is exactly what he did!! When he got to the OR he remembers laying down on the table and putting the mask on and breathing the "cotton candy gas". He said that once he put that mask on it got really hard for him to talk cause he was getting so sleepy! LOL The surgeon took his port out and then Dr.Murray , one of the HO drs, came in and did his end of treatment bone marrow aspirate and spinal tap! His port site actually feels fine , but his back is hurting him quite a bit (this is very common). He is walking around, but very slow and hunched over. (He says it hurts to walk too fast and also straighten his back) Right now between his pain medicine and cold medicine he is sleeping very well. It is hard for him to lay on his back. He is on his side with a small pillow behind him so that if he flips over on his back he won't be laying directly on the area that is very tender! Since he did not get giggle juice he has also not been nauseated at all from being put to sleep! He even ate a hotdog for dinner tonight! LOL
UPDATE ON JAMES- Joey's friend, James, is in the hospital. His counts fell drastically after the chemo he received last week. He was only able to go home for less than 2 days before he started running fever and had to be admitted this afternoon. Some blood cultures were taken as well as some other tests run. They should know something within a couple days! Until his temp goes away he is in "isolation"...He can't go out of his room at all.
I will add to both updates as anything new develops. The other kids are coming home tomorrow night. If Joey is not feeling too bad, we will ride with Dan to get them halfway between here (Fort Worth) and Houston. I have got to get some sleep while he is actually sleeping. Neither Joey or I slept well last night....too nervous about his surgery today. Hopefully with the help of his pain medicine tonight will go much better. He has been asleep about an hour and a half and I have not heard ANYTHING from him. Til next time....
Martha
Oh yes.....His counts were good today! His spinal fluid is CLEAR of leukemia cells!! Hopefully we will hear about his bone marrow tomorrow!!
Friday, March 11, 2005 3:59 PM CST
Good afternoon! I just wanted to give everyone an update about Joey's upcoming port surgery. It is Monday morning at 9:00 AM. We have to be at the hospital around 7:30. He can not have anything to eat after 1:30am. He is allowed gatorade, apple juice and water up until 5:30 am. HOPEFULLY he will be asleep during both of those hours! The port removal will actually only take a few minutes but after his surgeon (Dr.Black) is done then one of the oncologists will come in while he is asleep to do his end of treatment bone marrow aspirate and spinal tap. The purpose of those 2 things are to check his bone marrow and spinal fluid for any sign of leukemia cells before he goes off treatment. He will still take his by mouth chemos until Wed the 23rd. That is the day they will do all his end of treatment bloodwork. After tonight, he will have only 11 more doses of 6mp (his nightly chemo) to take and only 1 more dose of methotrexate (his weekly chemo). He was weaned off one of his meds during the last 2 weeks. :-) We are making progress!! We are all getting excited about him going off treatment and his off treatment party, April 2. If you want more details please contact me at my email address (listed at the bottom of the page) and I will give it to you that way. (I do not really want to post specfics online for everyone to see) All friends and family of Joey are invited!! :-) I have passed out quite a few invitations already, but have not been able to catch everyone that we have invitations for. Please let me know if you plan to come so we will know how many to plan for.
Please continue to keep James in your prayers as he finishes up this round of chemo tomorrow. The doctor expects his counts to drop quite a bit after this. If his counts drop as expected and he gets sick then he will end up in the hospital! (His website address is at the bottom of the page)
I better go for now!
Martha
Tuesday, March 8, 2005 10:30 PM CST
WEDNESDAY NIGHT-ALMOST MIDNIGHT- I just wanted to let everyone know that Joey is now completely weaned off one of his meds (Neurontin-he has been on this 3 times a day for the last year and a half to help with his leg pains! ) He took his last pill tonight. I have got to get some sleep, but I just wanted to share!! We now have less than 2 weeks left!! :-) For all our friends and family...If you have not already gotten your invitation to Joey's off treatment party, you should be getting it soon. It is Saturday, April 2. Please contact me if you have any questions about it or need a map!! We are planning to have alot of fun and just enjoy spending time with all our friends and family!!
Hi! I hope everyone is ok tonight. I took all these pictures of James and Joey at the clinic today. Joey did not have an appointment.....We just went up so he could play with James for awhile. Joey still has his cold and a little bit of a sore throat but is mostly feeling ok. He does not have any fever which is good. Plans have changed a little bit for his surgery on Monday. He is still having it, but while he is asleep one of the HO doctors is going to come over and go ahead and do his end of treatment spinal and bone marrow aspirate. He will still be considered on treatment until the 23rd. The 23rd is when he will take his last nightly chemo and get all his end of treatment bloodwork done.
For those of you following James as well. He started 5 days worth of chemo at the clinic today. He will finish up this round on Saturday and then get 2 weeks off. At that point he will get another 5 days of the same chemo he is getting this week. Sometime after the 2nd round of chemo, he will be rescanned to see if it is helping him!! Please keep him in your prayers that it may help him and he may be able to live his life the way 7 year olds should be living!
I need to get to bed.
Martha
Monday, March 7, 2005 3:41 PM CST
Good afternoon everyone! I just wanted to add a quick update since I was changing out the pictures! I wanted to start putting the pictures up from Homeschool Day at the Fort Worth Zoo that we went to on Thursday during the day while he was still feeling ok. (before our ER trip that evening) He was definately happier in these pictures than he was in the ER pictures!!
He is feeling some better after our trip to the ER on Thursday night. He had almost 103 temp at the ER, but has not really had much of one since he got up on Friday. His cough is some better, but he still complains ALOT of a sore throat and is really stopped up! If he starts running a temp again I will have to take him back in to repeat the blood cultures and have another exam. He is scheduled to have port surgery a week from today;however, if he does not get over his sore throat and sinus drainage they won't do the surgery. I had his older brother, Jarrett, at the doctor today and he has pinkeye. Something we definately do not want going thru everyone else in the family.
I better go for now. Joey's next appointment for counts is Monday at 8:30. He will have his port removal surgery later in the morning. I hope everyone has a great week!
Martha
Joey's friend, James (link below), is scheduled to begin a new chemo either this week or next. Please pray that it does not make him too sick and helps get rid of his tumor! Thanks!
Friday, March 4, 2005 9:02 AM CST
Just wanted to update everyone on our trip to the ER last night. We were there about 2 1/2 hours and then were released to come back home. At this point it is thought to be a virus of some kind. I got permission to use motrin to help with the fever. Once I gave him motrin and his prescription sinus and cough med last night he slept from about 11 to 6:30 this morning. I just gave him his meds again and he is about to lay down and take a nap for awhile before the kids come home from school....they get out at 11:15 today but will ride the bus home. Sometime today I have to call Dr.Wilkinson at the clinic and update her on what is going on, but I should not have to take him back in at this point. They took some more blood cultures last night and if there is any bacteria present in his blood then it will show up by tomorrow night. (48 hours) For any of you who missed the entry yesterday afternoon, he has his port removal surgery planned for Monday, March 14. Please pray he totally gets rid of the fever and all the sinus problems or they won't do the surgery. I changed out the pictures on the photo page....The pictures there now are the ones I took at the ER last night. (hopefully that will be our LAST ER trip) I got alot of good pictures at the zoo yesterday before he started feeling rotten. (His temp did not shoot up til we got home) He was coughing at the zoo, but he acted like he felt mostly ok til about 30 min before we left to come home when he got really grouchy. I will start posting zoo pictures in a couple days.
Please continue to keep Joey's friend James in your prayers. James is in the picture with Joey at the top of the page. James and his family could use alot of encouragement right now. The link to his website is at the bottom of the page under the links.
If anything changes as far as how Joey is feeling I will be sure to post.
Martha
Wednesday, March 2, 2005 5:09 PM CST
THURSDAY, MARCH 3 4:42PM- Joey had his appointment with Dr.Black this morning to schedule his port surgery. It is currently Monday, March 14 IF I can find a couple of kind souls to help me out by keeping my other children that will be off for spring break. It will also depend on if Joey is totally well by then. He has had a cold and today when we got back from the zoo his temp had shot up to 101. It is currently at 101.8. I just talked to one of the doctors and he wants me to bring Joey in to the ER to be checked over! Dan is on his way home from work and I will leave to take Joey as soon as he gets home. I will update when I can. I need to work on getting kids fed and showered.
Hi! Sorry it has taken me so long to update after Joey's appointment on Monday. His appointment went fine. His counts were ok. They were a little on the low side, but the doctor feels like that is because of his cold. His cold has gotten worse since we were at the clinic on Monday but so far he has not run any fever. He has a bad cough and over the counter medicine is not working too well so the doctor has called something in for us to go pick up.
We have a couple of exciting days the next 2 days. Tomorrow we will go first thing for an appointment with Dr.Black. We will set up a date and time to get his port removed. Right after we are finished we will head to the Fort Worth Zoo with some friends. The zoo has set up a day specifically for homeschoolers! On Friday night, we will go as a family to the Fort Worth Brahmas hockey game. The clinic was giving away free tickets. The boys especially are VERY EXCITED! I plan to take plenty of pictures at both events. :-)
We have a special prayer request. Joey's friend James,(see above photo) who is also 7, from the HO clinic is not doing well at all. He was diagnosed with Wilms tumor of the kidney back in March 2003. He had relapsed several times so last summer he had a stem cell transplant. He was doing very well, but his mom said they found out a couple of weeks ago that he had relapsed again. They are going to try chemo again;however, the doctors do not feel it will work. Please keep him in your prayers that the doctors may find something to help him! His caringbridge site is www.caringbridge.org/tx/jameshenry. His family could really use the encouragement thru this difficult time.
I will add a small update tomorrow after his appointment with Dr.Black and our trip to the zoo.
Have a great evening!
Martha and Joey
Thursday, February 24, 2005 7:04 PM CST
Hi! This is Joey. My mom is letting me update my webpage today. Tomorrow is Jarrett's birthday and he is going to be 9 years old. HAPPY BIRTHDAY JARRETT!!! :-) We are going to wait and go to the zoo next weekend for his birthday since he is sick. I feel fine. I go to the doctor on Monday to get an IV in my arm. I also get to go to the zoo on Thursday for homeschool day. I am working hard on my school work. Thank you for checking up on me.
Love,
Joey
Tuesday, February 22, 2005 2:18 PM CST ONLY 4 WEEKS AND 1 DAY UNTIL I AM OFF TREATMENT!!!
Hi! For all those who are wondering....Joey's appointment went fine yeterday. We were only there long enough to get his counts checked. His counts were ok. His ANC (white count X segs and neuts was down a little bit but not low enough where they had to stop or adjust his chemo. His cold had actually gotten alot better the last several days;however, he has been complaining of a sore throat some today. (probably because that is what I still have....I think we are just passing things back and forth) Joey has 3 appointments coming up.....Thursday, FEB 24 he goes to the eye doctor. Monday, Feb 28 he goes back to the HO clinic for his monthly IVIG infusion (hopefully his last). Next Thursday, March 3 he goes to see the surgeon who will take out his port. I assume we will set up a date at that point. Next THursday, if we are both well, we are also planning to go to Homeschool Day at the Fort Worth Zoo. I have to run pick up the kids from schoool, but wanted to update real fast. I hope to have some new pictures up later today or tomorrow.
Martha
Sunday, February 13, 2005 7:18 PM CST OFF TREATMENT IN 5 WEEKS AND 3 DAYS!!!!
Hi! I just wanted to let everyone know that Joey is feeling better. He still has a cold, but he feels fine. We are hoping to get back to a normal routine with his schoolwork this week. He does not have any appointments this week. Hopefully I will get the homeschool entry updated either tonight or tomorrow.
Martha
Wednesday, February 9, 2005 12:37 PM CST
THURSDAY 4:46 PM- I spoke way too soon!! He has been coughing pretty much for the last hour and now his temp is back up to almost 102. I guess going to the doctor again tomorrow is pretty much a given!! :-( We went a day and a half with him actually seeming to get better and now we are back where we were on Tuesday all day!! Please pray that he gets to feeling better really soon!!
THURSDAY 4:02 PM......Hi everyone! Joey's continues to have his low grade temp today. He is not coughing quite as often, but when he does it still sounds very bad!! His sinus' are also pretty noisy! I was able to make it to Jason's meeting today. Joey stayed with some friends from church for a couple hours! I do plan to call the clinic tomorrow if he does not sound ALOT better!
Joey seems to be feeling a little better today. He is still running a low grade temp , but thankfully it has not gotten high like it was yesterday. He still has a sore throat and a nasty nasty cough!! I have not heard anything from the clinic on his cultures that were taken yesterday so that is a good thing. If they are going to grow any type of bacteria it will usually grow in the first 24 or 48 hours. (48 hours is about this time tomorrow) I will update if anything changes. Til next time...
Martha
Tuesday, February 8, 2005 9:48 AM CST
3:09 PM UPDATE- We are home from the clinic. His problems appear to be something viral at this point. The did take some blood cultures and if those grow any type of bacteria then they will call us and tell us what to do. When they gave him tylenol at noon his temp was about 103. Right now we have to just treat the symptoms. Even if the cultures don't grow anything (which we won't know til tomorrow or the next day) I have to call if he is still sick on Friday. His port is definately broken. It would not do anymore today than it did on Thursday. They can not take it out when he is already sick so we will discuss the details of his port removal surgery on the 14th when we go back. He is also off all chemo for the next several days. I will update again if anything changes. Have a great day! Oh yeah...his counts were ok. :-)
Joey's temp hit the magic number of 101. We are headed in to the clinic to be checked out. Please pray his port will cooperate today and that they let us come back home. Anytime a child taking chemo gets a temp there is a good possibility of an admit for IV antibiotics. I will update when I know more....
Martha
Sunday, February 6, 2005 9:18 AM CST ONLY 6 WEEKS AND 3 DAYS UNTIL I AM OFF TREATMENT!!!
MONDAY-3:04 PM UPDATE- We are now on fever watch. He has just a low grade temp now, but he did not have any an hour ago. He has been coughing alot since last night and he is now starting to complain that his chest hurts. I have been giving him Robitussin Pediatric that has both cough med and a decongestant in it and that is really not doing much. We are waiting for a call back from the clinic.Please pray that he does not get any worse. We have alot going on right now. Jason's nosebleeds have started back up again for some reason. I am also waiting for a call back from the ENT to find out when they can fit him into the schedule to get his nose cauterized. He is also supposed to get 4 teeth pulled tomorrow. Wednesday afternoon I have to go to an ARD meeting at the school for Jarrett (initial meeting to get him special ed services for his reading) and Selina for her speech. I also have Jason's annual ARD meeting on Thursday morning . He has had his 3 year testing done in the last few weeks. I will add a small update later on when I hear from the HO clinic on Joey and the ENT on Jason.
Good morning!!! Joey is not feeling too good today! He has a cold and sore throat! He has also been crying with his stomach this morning (my guess is from the chemo he took Friday night) He and I stayed in from church this morning and are going to go lay on the couch and watch Mulan 2.
If you missed the entry about our exciting dr visit on Thursday, it is the first entry under the "read journal history" link. Hope everyone has a terrific day!
Martha and Joey
All the pictures have been changed out....go take a peek!! :-)
Friday, February 4, 2005 4:56 PM CST ONLY 6 WEEKS AND 5 DAYS LEFT UNTIL OFFICIALLY OFF TREATMENT!! :-)
Hi everyone! We had a rather exciting visit to the HO clinic yesterday. The good news is his counts were very good. I saw and visited with Dr.Wilkinson about Joey going "off treatment." He was scheduled to have his end of treatment bone marrow aspirate and spinal on Thursday, March 24. Dr.Wilkinson is not going to be in the office that day so we are planning everyhing for the day before (March 23). I asked about the chances of him relapsing and he has a chromosome pair called TEL/AML which moves his longterm survival from 80-85o 90-95 There is a chance of him relapsing, but the odds are definately in his favor. :-) The longer he goes off treatment without relapsing the better his odds are!!
Now for the unpleasant part of our visit....Yesterday was his monthly visit where he was to get his IVIG infusion. I always put "magic cream" on his port ahead of time so the area is numb when they try to access him (stick the needle in). Unfortunately, yesterday his port decided it WOULD NOT cooperate! We could not get it to do ANYTHING...it would not let anything in or let the nurses get any blood out for his cbc. We were sent up to xray to see if it had gotten bumped out of place and everything looked fine. We go back 2 weeks from Monday. They will try again and if it is still not doing anything we will set up a time to go ahead and take it out. Since we are so close to the end of treatment they will not put another one in. He will just use normal IVs in his hand for the remainder of his IVIG infusions. He may only have one more at the beginning of March. When the rest of his off treatment bloodwork and tests are done the dr is going to check his immune levels. If they are still questionable then she will likely continue his IVIG infusions for a month or 2 afterwards. After all the problems with his port it took 3 tries to get an IV in his hand.... He WAS NOT a happy camper!!! He has not had to have an IV in his hand since the day he was originally diagnosed before his port was put in. That was 2 1/2 YEARS ago!!
I think that about covers our day yesterday. Oh yeah...He now has 2 mouth sores and the dr added another 2 weeks of medicine for that. After 2 weeks we finally got his stomach problems under control. :-)
Til next time. We hope everyone has a nice weekend!!
Martha
Monday, January 31, 2005 11:33 PM CST OFF TREATMENT IN 7 WEEKS AND 3 DAYS!! :-)
Good evening! (Actually I guess it is night now :-) ) Joey is not too happy right now. He has had constipation issues for the last week and a half and we are still working on solving it!! The dr on call last night ASSURED me that the med that one of the other drs called in on Saturday WOULD WORK! Poor kid still has a bad tummy ache...the same one he has had for the last week and a half! He also still has the bad sore on his lower lip. It looks like it is starting to dry up a little bit from the medicine so hopefully by the end of the week it will be gone.
It is midnight and I should probably go to bed. I will atleast update again after his appointment on Thursday. He goes in for blood counts, an exam and his 2nd to last infusion of IVIG. :-)
Saturday, January 29, 2005 10:39 AM CST -ONLY 54 MORE DAYS LEFT OF TREATMENT!!!
11:34 AM- I also wanted to put in a special note to thank Joey's angel Theresa for the package he got in the mail. He really liked everything that you sent!! :-) Thanks again!!!
Good morning everyone! I hope everyone is having a great weekend!! Joey just left a few minutes ago for a friends birthday party. I know he will have alot of fun playing with his friends from church!! The rest of us are just hanging around the house today.
Joey is mostly feeling ok. He has been having a little trouble with constipation this week. I talked to the dr on call earlier and she is calling him something in since what I was told to do earlier in the week didn't work. :-( She assured me that this would! :-) He also has a pretty good size mouth sore on his lower lip. She is calling in something for that too. The chemo he is on can cause both of these problems. If he gets ANY more mouth sores or it starts effecting his eating I have to call and bring him in sooner than next Thursday (his regular appointment).
I hope to get a new homeschooling update up this weekend. Dan changed the way it was being entered and now he has to put that part in. :-) A couple of things have changed in his schoolwork. The first is he is now doing the same spelling list as Dustin's 3rd grade class. A week ago Friday he took his first test with Dustin's class and he made a 95 on the spelling words part and a 90 on the sentences. :-) They did not have a spelling test yesterday because of some other testing that 3rd grade was doing. I am hoping that taking spelling tests each week with Dustin's class will help him get used to testing in a classroom environment. Since we pulled him out just 7 weeks into the school year and they had barely started spelling, he is not used to taking tests in a group setting. Hopefully this will be one less thing he will have to get used to when he goes back to school in the fall. The second thing is he is starting to learn Spanish. I found a beginning spanish workbook for 1st-3rd grade. It is pretty thick and also will teach him alot! Since he is from a hispanic background I have always wanted him to learn it. I would like atleast Selina to learn it also but right now she has her hands full with what she is doing in school.
I should go for now. I hope everyone has a nice weekend.
Martha
Monday, January 24, 2005 3:09 PM CST
MONDAY-4:54 PM- All the pictures on the photo page are from our trip to Colorado over the Christmas Holidays. I just talked to Dr.Wilkinson on the phone and he will officially end treatment on March 24, 2005. I put the picture of Joey and Dr. Wilkinson back up for a couple of days because Dr.Wilkinson had not been able to see it when it was up before.
Hi everyone! Sorry for the delay in updating! Everything is fine. Joey had a good week last week. He has been feeling good. His appointment on Thursday was rather uneventful. The nurse practitioner was happy with his counts. There has been a mixup as to whether or not Joey finishes treatment 3-24 or 3-31. His dr is supposed to call me sometime today to sort it all out. Either way, his off treatment party will be on Saturday, April 2. (no definate plans have been made for it yet...We are still working on it)
If you have not ordered your "Faces of Childhood Cancer Calendar" the link is above. We got ours in the mail today and we really like it. In fact Joey likes to look at it so much he keeps trying to take it from me. He is especially interested in the kids that are also being treated for ALL like he is. The calendar is for a very good cause. :-)
I need to go for now. It is homework time at the Fontenot house! :-) Afternoons are rather crazy around here at times. I am hoping to have a new homeschool update up soon.
Friday, January 14, 2005 11:32 PM CST
Hi! Joey's cold is ok, but off and on this week he has complained of his stomach hurting. His legs have been hurting him more than normal and today he started complaining that his hands were hurting. The last time he complained about his hands were the last 2 times he got a Vincristine injection that causes the severe bone pain. The last time he had Vincristine was in October. I am very glad he has a clinic appointment next week. I plan to ask the doctor about these things. I will call sooner if he starts feeling worse. Right now the complaints are usually pretty minor and in passing.
Til next time.....
Monday, January 10, 2005 7:59 PM CST
Joey has acted like he has felt much better today. He still has a cold, but I think we are making progress in how he feels! :-)
Martha
Monday, January 10, 2005 0:19 AM CST
MONDAY-9:54 AM- I just talked to one of the nurses at the clinic and she gave me a few suggestions. At this point I do not need to take him in. If his temp reaches 101 then I will have to call and take him in.
Joey is still not feeling the best, but there were actually a few times today that he perked up for a few minutes. I am still debating about taking him to the doctor tomorrow. I am going to wait and see how he sleeps for the rest of the night and how he seems in the morning. I will update if we end up going in.
Martha
Wednesday, January 5, 2005 4:31 PM CST
FRIDAY -4 :57 PM- Joey started crying about 30 minutes ago that his ear was hurting him. I gave him tylenol and if that does not help or he starts running fever I will have to call the dr on call and likely take him in to get his counts checked again and get antibiotics for his ear. The positive side is his doctor is on call this weekend. :-) ....Maybe I should not have been bragging yesterday about the fact that he had not been sick in awhile. :-)
I want to brag on him for a minute. This morning while we were up at the elementary making the copies for the 3rd grade team he sat down beside Dustin and did the same 3rd grade reading/vocabulary page that Dustin and his class were doing. I sat beside him, but he did the work on his own. :-) He was pretty proud of himself. Dustin's teacher let him put it in her "turn in basket" and she is gonna grade it for him and send it home with Dustin. :-)
THURSDAY NIGHT- 11:22 PM- Joey's doctor appointment went fine today. His counts were higher than they really need to be so he got one of his chemo doses upped. He goes back on Thursday, January 20. He has 11 weeks of treatment left! We are tentively scheduling his "off treatment party" for Saturday, April 2. More details will be posted as they come available. Everyone is welcome to come! ;-)
Hi! I hope everyone enjoyed their holidays! I want to thank everyone who bought the kids gifts!! They really enjoyed everything that they got! We really had a good time on our trip. We left December 23 and headed up to Colorado. We got back late on January 1. We got to see many friends and family while we were gone. While we were in Midland on Saturday we got to meet some of Joey and Selina's birth family at Chuck E Cheese...see pictures above and in photo album. We really enjoyed our visit. Joey has an appointment tomorrow, January 6. He will get an exam, counts done, and his monthly infusion of IVIG. HIs platelets were on the low side when we went last so hopefully those will be up and the rest of his counts be stable as well. I will update tomorrow afternoon/evening to tell how his appointment went.
Martha
Sunday, December 19, 2004 2:26 AM CST
Hi!! We want to really thank Theresa, Carrie and Kim (Joey's Warrior Angels) for all the Christmas presents for all the kids!!! We met Theresa and Carrie about halfway between Fort Worth and Plano this evening (Saturday) to visit. We all really enjoyed ourselves and hope we can do it again soon!! Take a look at the new pictures on the photo page. Carrie was nice enough to help me make a collage out of some of the pictures so I was able to fit more on there. Hope everyone enjoys the new pictures. Check back in a few days and I will post some new and different pictures. I will likely be changing them out every few days thru the holidays. We have alot going on! :-)
The Fontenot Family
Dan, Martha, Jason, Dustin, Selina, Jarrett and Joey
Thursday, December 16, 2004 4:58 PM CST
Hi! Sorry it has taken me so long to update after Jason's visit to the ENT on Tuesday. The CT scan did not show anything. The good news of that is there was nothing serious there like a tumor. The bad news is we still do not know why he is having the problems he is having. We are still waiting for his bloodwork to come back that was done 2 weeks ago. I hope we get the results back soon.
Joey has an appointment on Tuesday afternoon (the 21st) to get his counts checked. It SHOULD BE a SHORT appointment!!
The kids had their Xmas parties at school this afternoon so I brought home 5 hyper kids that had been pumped full of sugar. They have to go to school tomorrow, but only until 10:15. They will go back to school on Wednesday, January 5. We will leave next Thursday, December 23 to go to Colorado. We plan to be back home on Saturday, Jan 1.
I will update again after Joey's appointment on Tuesday or when I get Jason's bloodwork results back...whichever comes first.
Be sure to check out the Childhood Cancer Awarenss calendar that Joey is a part of. He is Mr.October. :-) The link is above.
I will be changing out the pictures on the photo page every few days for awhile so take a peek. :-)
Martha
Thursday, December 9, 2004 3:55 PM CST
HI! Despite our problem yesterday with getting Jason's CT scan done, it is now done. I know we have an appointment on Tuesday to take the scans with us to the ENT. I do not know if we will hear anything about them before then or not. There was not even a dr available to read the scans when we were there at the Radiology place. As soon as I find something out, I will let everyone know. We really appreciate the prayers. He has not had quite as many nosebleeds this week, but the knot and swelling on his nose seem to really hurt him. None of the 3 doctors that have examined him (HO dr, ENT and peditrician) can figure out why the swelling and knot are there. That is why the CT scan was ordered.
Martha
Wednesday, December 8, 2004 4:14 PM CST
Hi. Jason did not get to have his CT scan of his head and sinus' this afternoon. His appointment was at 3:15 and we even got there early. We got all signed in and were waiting and they told me the CT scan machine had just broken. I am suppossed to call back at 10 am in the morning and if it is fixed I will go pick him up from school and go back up there and they will work us in. I just hope they are able to get it fixed. I will update when I know more.
Martha
Monday, December 6, 2004 5:41 PM CST
Jason had his appointment with the ENT this morning. Dr.Palmer said the blood vessels in Jason's nose are enlarged causing the nosebleeds. He wants to do outpatient surgery on Jason to cauterize them;however, he wants a CT scan done on his sinus' and head first since there is a knot and swelling present. He was not sure why those would be there. His CT scan is this Wednesday, Dec 8 at 3:15 and his follow up with the dr to discuss his scans etc will be next Tuesday, Dec 14 at 1:15 PM. Jason's bloodwork should be in next week as well. Until then, we just keep doing what we are doing.
Martha
Friday, December 3, 2004 9:06 AM CST
UPDATE-SATURDAY-4:15 PM- Dr. Wilkinson made Jason an appointment with the ENT for this Monday morning at 9:45. She had already dictated some stuff about Jason and had it sent over to the ENT's office so they are all ready for us. He only had 5 yesterday instead of the 6 he had had both Wednesday and Thursday. He has only had one so far today. Please continue to keep both boys in your prayers....though Joey is feeling really good!
Good morning! I am sorry it took me until this morning to update. The boys appointments at the HO clinic went ok. Joey's counts were actually very high. For a person with a normal immune system they were very good. They were really higher than his doctors like to see. They like his ANC (white count X segs and neuts ability to fight infection) to stay between 1000 and 1500 and his was 4000 yesterday. They aim for that range so the child is able to fight off alot of what they come in contact with, but it is not too high so they can still see that the chemo is being absorbed. Basically it is not anything to worry about, but if it stays that high they will adjust his daily or weekly chemo doses. He has his next appointment on Monday, Dec 20. We would have typically gone the Thursday before that but the doctor wanted to check his counts a little closer to when we leave town for Christmas.
Jason's appointment went ok. We still do not know why he is having all the nosebleeds he is having. They ordered alot of blood tests to be done but it will take like a week and a half to get them back. Last night he had some pretty bad nose bleeds and I called the doctor on call (which luckily was Dr.Wilkinson who is Joey's doctor) and she is going to get with the dr that examined Jason yesterday (Dr.Torres -who evidently deals alot with bleeding disorders) and get him referred to an ENT to be checked out in the meantime while we wait for his blood tests to come back. Since Jason's nose is hurting him and there is a little swelling they want to be sure there is not a polyp or something there. She said the ENT would be able to get a better look. So for now we wait. He is at school today, but the way he felt I am not overly convinced he will make it all day. He had already had 1 nosebleed before school and he has had 6 each of the last 2 days. (21 since Sunday night)
I need to go for now. I will update more as I find anything out.
Martha
Thursday, December 2, 2004 6:30 AM CST
Good morning!! This will be a quick entry. I will update more after the boys appointments today. I want to apologize to 2 of Joey's angels. We got the packages they sent at the end of last week and with everything that has gone on here I forgot to thank them.
Kim- Thank you very much for the lunchbox you sent Joey and the Livestrong bracelets you sent everyone else! My school kids have been religiously wearing them to school this week.
Theresa- Thank you very much for the package you sent Joey. His coloring books and new toy came in very handy for our trip to Houston!! He and some of his brothers spent alot of time coloring in those Spiderman coloring books on the trip!
Thanks again!! I will update more after the boys appointment today. I expect to be gone most of the day.
Martha
Tuesday, November 30, 2004 4:58 PM CST
NEW UPDATE-Good morning!! I just wanted to let you know that there is a new Childhood Cancer Awareness calendar for 2005. I believe Joey is the child for October. You can order them online at the address above. They would make great Xmas presents and they are for a great cause!!
Hi! There is nothing much to report here. We got back in town on Sunday night from our trip to Houston for Thanksgiving. None of the kids were overly excited about getting back to school, but they know they have only 2 weeks after this one before they get off for Xmas break.
Joey and Jason both have appointments at the HO clinic on Thursday. Joey will get counts done, his monthly check up and also his monthly infusion of IVIG. I am not sure what all Jason will have done since it is his first appointment there. Jason went 3 days over Thanksgiving without having a nosebleed; however, he has had 7 since then (1-Sunday night, 3-Monday and 3-so far today). I really hope we figure out soon what is causing him to have all these nose bleeds. He also seems to be bruising very easily.
I need to run for now. I will plan to update again on Thursday evening sometime.
Martha
Sunday, November 28, 2004 0:45 AM CST
Hi! I hope everyone had a great Thanksgiving. We really did. We have been in Houston since Thursday with Dan's family. We will go to church in the morning (Sunday) and then head back after lunch. Unfortunately most of us are going home with sore throats or a cold. I should really get some sleep.
Martha
Thursday, November 25, 2004 7:56 AM CST
Happy Thanksgiving!! There is not much to add here. We will be leaving for Houston in the next couple of hours.
I also wanted to thank Joey's Angel Theresa for the package that we got in the mail yesterday. The kids really liked their stuff.
I hope everyone has a great day! We will be back in town on Sunday night. I will likely update on Monday with new pictures and a new entry...atleast a new homeschool entry. Til then...
Martha
Wednesday, November 17, 2004 1:48 PM CST
HI. I just wanted to update real quick before leaving to pick the kids up from school. For those of you wondering about Jason. We finally got his appointment made at the HO clinic for Thursday, December 2. I changed Joey's appointment to that day as well. Joey will get counts done and also his monthly infusion of IVIG as well as his monthly exam with the dr. I am not sure what to expect for Jason that day. I am assuming they will do plenty of bloodwork and check him over good. No other real news here. Please keep both boys in your prayers! Thank you!
Martha
Thursday, November 11, 2004 11:25 PM CST
MONDAY NIGHT- 11:20 PM-Hi everyone! Joey is fine;however, we have another prayer request. Our oldest son Jason, who is 12, has been having nosebleeds. He had another appointment with the pediatrician today. The pediatrician is in the process of referring him to the Hemotology/Oncology clinic at Cook Childrens where Joey is being treated to be checked out good. Hopefully I will find out more tomorrow as to when his appointment will be. I will plan to update Joey's homeschool update tomorrow sometime.
Hi! I actually took Joey in yesterday to have his counts done. I knew that the other 4 had a school holiday today and I did not want to take them all!! Anyway, his counts are still very good. It is amazing how good he is doing now since he is not exposed to alot of things on a daily basis and he is finished with his hard chemo that he was getting at the clinic. The current plan is to keep him out the rest of the school year and put him back in for 2nd grade. It is quite late and I need to head to bed. Until next time...
Martha
Tuesday, November 9, 2004 0:10 AM CST
Hi! No new news here. Joey has been feeling really good. His next appointment is Thursday morning to get his counts checked.
Martha
Monday, November 1, 2004 11:33 AM CST
TUESDAY, NOVEMBER 2- Joey and I decided we wanted a patriotic background up today for Election Day. We are doing alot of activities and studying about the election today. It is also Jason's 12th birthday today!!
Good day everyone!! First of all, we want to thank 2 of Joey's angel warriors. On Saturday, Joey and I received some goodies from Theresa. Joey got some new Spiderman things- a new Spiderman car, a Spiderman deck of cards and some Spiderman things that squirt water to play with in the bathtub. I got some wonderful smelling candles and some bath stuff. We both loved our stuff!!!
On Saturday, all the kids got a box from Kim. She sent them each a Halloween flashlight. They were so excited!!!
We want to thank you both very much!!
Joey is feeling really good. He has gone almost 2 weeks now without feeling bad from either chemo or any other illness!! We hope that continues!! We had a nice Halloween weekend. I had a shadow ninja, 2 Harry Potters, a Victorian Vampiress and a cowboy!! Somehow I did not get a picture of the 5 of them together so I plan to have them put their costumes back on after school today so I can take one to post. :-) I am sure they won't mind!! Be sure to check out the new pictures that were taken from this weekend.
We do not have any doctors appointments scheduled for anyone this week...at this point anyway. :-)
We hope everyone has a great week!! Unless something exciting happens during the next week and a half it will likely be a week from Thursday when I post again. (He gets counts done that day)
Martha
Thursday, October 28, 2004 5:36 PM CDT
Joey's dr appointment went real well today. His counts were really good. His ANC (white count X segs and neuts was 1507. They want this number between 1000 and 1500. They aim for that range so it is high enough for him to be able to fight off the day to day things he is exposed to, but it is also low enough so they can see his chemo is effecting his counts the way it should be. Last week it was at about 900 and it was about 800 the week before. He had his LAST spinal tap with chemo today. :-) It went fine. I am very glad his counts were so good today. Next week at this point they will probably be down a little bit from the chemo he got injected into his spinal fluid today. (It takes about a week for the chemo he gets to effect his counts ) His next appointment is 2 weeks from today to check his counts. Until then, he will hopefully continue to feel as good as he is feeling now!! I will update with more pics after this fun Halloween weekend. :-)
Thank you very much for continuing to keep Joey in your prayers. He really enjoys all the guestbook entries he receives on a daily basis. :-)
Martha
Monday, October 25, 2004 4:58 PM CDT
Joey has felt really good all weekend. Nothing major to report here. I entered a new homeschooling report above the journal entry. All of the pictures on the page are new as well! Have a great day! His next appointment is Thursday for his LAST spinal tap, IVIG and blood counts.
Martha
Thursday, October 21, 2004 6:09 PM CDT
Good evening. Just wanted to let everyone know that Joey's counts were better today. We can take him out, but we just have to be careful of large crowds and people that we know are sick. He also said not to let alot of people get up to Joey's face and make him wash his hands alot. I need to go for now. We have company coming tomorrow and I am cleaning house as well as the usual routines of doing homework and getting 5 kids bathed. :-) Please if you are interested in donating for the Light the Night walk to benefit the Leukemia and Lymphoma society, get in touch with me. My email is at the bottom of the page. The walk is on Saturday evening and every little bit helps find a cure for Joey and others just like him. Thank you very very much!!
Martha
Monday, October 18, 2004 8:39 AM CDT
Good morning!! I started something new this week. Each Monday, I will put a HOMESCHOOLING UPDATE before the journal entry. In this update I will put an overview of things we will be studying during the week.
He felt pretty good over the weekend for the most part. HIs cold is mostly better but he is still having problems with his legs off and on. Since he has had such a hard time fighting things off since school started and his counts were a little low, we are keeping him in and not exposing him to alot of crowds. We want to try real hard to get past this phase of him being sick all the time. He goes back to the doctor on Thursday to check his counts again. I better go for now. I have some homeschooling stuff I need to look up on the internet before we get busy again in a few minutes. Right now he is just laying on the bed coloring and decorating the pictures I put on his science and social studies folders. :-)
Martha
3:24 PM- If anyone is interested in supporting the Leukemia and Lymphoma society, there is a walk this weekend. We may try to go. I will be trying to collect donations this week. If we go, I will take them all with me. If we are not able to go, then I will get the money to one of Joey's angels that will be walking. I know atleast 2 of his 3 warrior angels will be there. A couple of my other children, Dustin and Jarrett, have offered to give some of their money to help Joey and kids like him. I was very touched. I never would have asked them to do this!! I told them about the walk and that we might go and they came up with the idea themselves!! My email address is below. Please email if you would like more information about helping. Thank you very very much!!
Thursday, October 14, 2004 7:43 AM CDT
4:07PM- Joey's dr appointment went fine. His counts are a little low so we have to be careful to keep him away from large crowds and people that we know are sick. The child life worker, Terri, had a wonderful birthday party for him at the clinic today. It was complete with a Power Ranger cake, balloons, presents and CONFETTI! :-) When we got home another balloon bouquet showed up at the door. This one was from one of his wonderful warrior angels Theresa! Thank you very much Theresa! I also want to thank everyone who has left Happy Birthday wishes in his guestbook!! I will add more later this evening...I do have some new pictures to post but my camera battery is currently charging so it will be later.
Happy 7th Birthday Joey!! He woke up in a really good mood this morning. He is still pretty stopped up and he says his ear is hurting, but for right now the excitement over his birthday is mostly overshadowing how he feels. :-) He has his dr appointment at the clinic this morning at 11. More update and pictures later.....
Martha
Wednesday, October 13, 2004 0:28 AM CDT
Joey is still feeling pretty yucky. He still has a low grade temp and nasty sinus'. He also complained of his legs and his hands quite a bit during the day today (Tuesday). Hopefully tomorrow will be better in both areas (both bone pain and cold related).
We do have some exciting news. There is a program called "cancerwarriors" that Joey is now apart of. This is a program designed for kids with some type of cancer. Thru the program each child is given a "cancerwarrior angel." Joey actually has 2...Theresa and Carrie. They both live not too far from here. We are looking forward to getting to know them better. The idea is for the child to receive some type of mail a couple of times a month atleast to help cheer them up as they go thru cancer treatment. If you are interested in finding out more about this, the website is www.cancerwarriors.org .
Anyway...Joey is looking forward to his 7th birthday on Thursday. Terri, the wonderful Child Life worker at the HO clinic is giving him a small birthday party at the clinic. She is looking for either Spiderman or Power Rangers plates and cake. If he is not feeling better by then his party will be spent in the isolation room instead of the playroom. If he is better then he will be able to share his cake and fun with the other kids in the playroom at the clinic.
I need to attempt to get some sleep. It is almost 1 AM and the alarms start going off really early around here. Joey is actually sleeping right now....in my bed....but atleast he is SLEEPING!!! Benadryl sure is WONDERFUL stuff! :-)
Martha
Monday, October 11, 2004 1:21 PM CDT
I was hoping this entry would be better news than the last several have been. He was actually feeling a little better last night and we were able to give him tylenol for the pain in his legs and hands and go on to church.(first time in 8 services he has been able to go) Unfortunately he woke up this morning with a cold and a little fever. We have not quite hit the magic temp of 101 yet where we have to call the dr and take him in. He has an appointment on Thursday for counts and an exam anyway but I have a gut feeling we will not wait that long before going in. We have a meeting going on at church this week every evening so Dan and I are currently trying to figure out which one of us will go the different nights. I want to thank everyone who has been signing his guestbook during this difficult time. We all really appreciate it!!
Martha
Thursday, October 7, 2004 1:57 PM CDT
Good afternoon! Joey's appointment went ok. The good news is.....HE IS NOW OFFICIALLY DONE WITH BOTH VINCRISTINE INJECTIONS AND TAKING STEROIDS!! :-) We will still be dealing with side effects from them for a couple more weeks, but once he gets over the side effects he will not have to deal with those drugs ANYMORE. :-) The dr confirmed what we were thinking. The jaw pain and hand tremors are both from the Vincristine as well as the leg pain. Since he has had the jaw pain and hand tremors this week when he had never had those before she still gave him Vincristine today, but she gave him a reduced dose. (more reduced than the dose he was already on because of all the problems with his legs) Since he has been sick so much lately and had such a hard time with the chemo this week she wants him to come back next Thursday, on his birthday, to have his counts checked. We will hopefully then get a week off and then he will have his LAST SPINAL TAP WITH CHEMO on the last Thursday of the month. One plus to going on his birthday is the Child Life worker, Terri, is going to have a cake and mini party for him at the clinic that day. :-) He is very happy about that!! I plan to leave the background with the balloons up for a week and a half or so till we get past his birthday and I post some pictures. Well I should run so we can go pick up the other kids from school. He does not seem to hurt quite as bad as he has been so I am hoping to get a few things done this afternoon before his next chemo dose gets in his system good and we start with the severe pain again. (probably tomorrow morning is my guess as to when it will set in)
We want to thank everyone who has signed his guestbook!! He really enjoys reading them! It seems to cheer him up to know that people are thinking about and praying for him during his rough time. Have a terrific day!!
Martha
Wednesday, October 6, 2004 3:05 PM CDT
Joey is feeling about the same. He is still having alot of bone and stomach pain. Yesterday and today I have noticed that he has a tremor in his hand anytime he tries to write. We are assuming it is related to all the bone weakness that he is having right now which is normal for the Vincristine that he got last Thursday and will get again tomorrow.
Homeschooling is going well. Right now, with how he is feeling, we have to do it in short periods of time. He is just weak and not feeling the best so he has trouble working for too long. He is very happy that both last week and this week I have given him harder spelling word lists than he was getting at school.
I should go for now. I need to go get the other kids motivated to do their homework.
Martha
Saturday, October 2, 2004 11:09 AM CDT
ENTRY FOR SUNDAY OCTOBER 3 UNDER THIS ENTRY
I am not sure what happened. I tried to update yesterday and even typed quite a lengthy entry but I ended up losing the whole thing. Joey is not feeling good at all! The severe bone pain from the injection he got on Thursday has already kicked in. I think he is finally mostly over his stomach bug that he had all week, but both the steroids and the injection he got can cause stomach pain too. His throat was a little red on Thursday and now it seems to be hurting worse and it has also moved to his ears. His is currently taking a warm bubble bath. (The warm water seems to help his legs not hurt quite so bad) Please sign his guestbook. The entries really seem to cheer him up and make him feel better. Thanks.
Martha
Since he has alot going on at the clinic this month and his birthday is on the 14th, I will likely be updating frequently.
SUNDAY,OCTOBER 3
Joey is continuing not to feel well at all. This morning he also started complaining of his jaw hurting real bad. (That is another side effect of the injection he got on Thursday) For some reason he was hit harder and faster this time than he has in the past. We feel it is because his resistance was already down from the stomach bug that he had all week.
Tuesday, September 28, 2004 8:10 AM CDT
10:34 AM-I finally was able to get in touch with the nurse at the clinic. She told me if he gets worse during the day or is still having any problems in the morning then we will have to go in. For the rest of the day he is only allowed to have gatorade and then we will progress from there. For now we are laying around having some mommy-son time and watching a lot of tv. (He does not feel up to doing much) We have also made the decision to withdraw him from school for the time being because of how much he has missed already and will continue to miss atleast thru the end of October. The plan is to put him back in after Christmas break (only if he is up to it) or for second grade. He goes off treatment in March so hopefully by this summer his immune system will start getting built up again. I already have all his first grade school books from when we started them in the spring. He is well into all of them so I really figure by midyear or Spring he will be finished with them. He is pretty happy about homeschooling again. He said he will miss his friends but he knows he will get to see them again atleast by second grade. Until later....
Good morning everyone! Joey's stomach is still bothering him. Saturday night his stomach continued to cramp really bad all night and he had diarrea a couple of times. His temp also stayed around 101 all night but it did not go above that. Sunday and yesterday during the day his stomach has still been bothering him and he really is not eating much. Last night at dinner time we finally got him to eat a couple of plain tortillas. Within about 30 min he had diarrea again and has already had it twice this morning. What concerns me this morning is he had it the last time after drinking sprite. (One positive is he has been handling sprte and gatorade fine-until a few minutes ago) When he has fever it is just low grade. I am about to call the clinic in 15 min when they open and I really figure they wil have me bring him in. I should go shower while the bathroom is actually free and so I can be ready to go after I talk to the nurse. I will update again when I know more. Hopefully we are able to figure out what is causing his continued problems and get it sorted out. (So much for my hope of him being able to make it to school 3 days this week before getting chemo on Thursday.....He is now on absence #10 and this is only the 2 day of the 2nd 6 weeks. :-( )
Martha
Sunday, September 26, 2004 1:56 AM CDT
Well it turns out we made a wise choice not to leave town this weekend. He has had a sore throat for the last few days (which was not surprising considering the other kids and I had had it all week) He was ok when we put him to bed around 8 but at about 11:30 he woke up crying his stomach was hurting. He had a little bit of diarrea right after he got up. He also has had about a 101 temp. I called the doctor on call and I have permission to have him at home for now but if his temp goes up to 102, he has trouble keeping things down or he is still feeling bad in the morning then I will have to take him in. We are not sure at this point if the fever is from his throat or a stomach virus. The stomachache could also be from all the drainage that he has. So at this point I guess we will just wait and see. He has not had any more diarrea but he has been consistently crying with it despite the fact I gave him his Visteril (stomach med that usually calms him right down). I gave him a dose of tylenol about the same time (midnight) and his temp is still about the same. I better get this finished up before he comes looking for me. He is watching cartoons. I was hoping he would calm down and feel better atleast for awhile after taking his meds , but I have not been that lucky yet. I guess he and I will be sleeping in the living room tonight. ( I am wondering at this point if we will get much ) I will update when something changes...
Martha
Wednesday, September 22, 2004 3:32 PM CDT
Oh my! It is past time for me to update this page. It has been a little over a week since I updated last. Joey had an appointment on Friday for counts. His ANC is a little less than 4000 when they want it between 1000 and 1500. It was a little high at his previous appointment but not that high. Basically all this means is if they are still high at the next visit, he will get one of his by mouth chemos adjusted to a higher dosage. He has actually gone about a week without having sinus problems. (It is the first time since school started 6 weeks ago) The real amazing thing is that me, Jarrett and Selina have all been sick. In fact Joey is the only one that has not had any sinus problems in the last week. I just hope he does not wake up with it tomorrow or Friday since we are supposed to be going out of town for the weekend.
I am still not entirely sure what is going on as far as school is concerned. The superintendent was supposed to call me back yesterday or today and I have yet to hear from anyone. I will call back in the morning if I have not heard from anyone. If he is still not on 504 by the middle of next week then I will withdraw him until he feels better from the injections and steroids and then put him back in. The lady that is in charge of the attendance said that alot of times parents will do that if the child will be gone for more than a day or 2 at a time. (either illness or vacation) Since he would be back, his spot in his class would be held for him and we would be able to get all his work that he would miss. He just would not be counted absent for all the days he would miss. His schoolwork is still very easy for him. He will have his first spelling test this week, but the words are easy and he already knew them on Monday when he brought the list home. He continues to have behavior issues at school fairly frequently. Hopefully we will work thru these very soon.
His next dr appt is a week from tomorrow (Thursday). We will be there for about 6 hours. He will have his counts checked, his monthly infusion of IVIG, and a chemo injection of Vincristine into his port. That night is when he will start his steroids. (one pill in the morning and one at night for a total of 14 doses) If you have never been around a person (especially a tempermental child) on steroids I would recommend avoiding it if at all possible. It IS NOT a pretty sight!!! Emotions are very extreme and within a very short amount of time you can see happiness, rage or crying over nothing! If you don't believe me I can give you a LONG list of other parents who have had a child on steroids or just come stay with us from next Thursday or Friday for 2-3 weeks and you will see it. :-) On top of that, the steroids and the injections make his bones hurt VERY BAD. He always feels terrible for about 2-3 WEEKS during this period!! Unless he were to relapse this will be the LAST time we have to go thru the Vincristine and steroids period!
It was right at 2 years ago that our leukemia journey began with him. We are now finally able to see the light at the end of the tunnel. He has this last set of Vincristine and steroids starting Sept 30 and his last spinal tap will be at the end of October. He will still be on treatment until the end of March. We will still have to go every 2 weeks for counts, monthly for his IVIG and he will still take his 2 chemos by mouth here at home. He has been put thru more than any child should ever have to endure! Hopefully after March he will be able to get into a "normal" routine (as normal as life ever gets with having 5 kids! :-) ) and feel real good more often than he feels bad. We do plan to have an "OFF TREATMENT PARTY"! at the end of March or beginning of April!...More details available in about 5 months. :-) Everyone will be invited! Until next time....
Martha
Tuesday, September 14, 2004 4:15 PM CDT
Good afternoon everyone!! Joey is STILL fighting a cold. He was alot better on Monday and Tuesday of last week so I sent him back to school on Wednesday. Ever since he came home on Wednesday afternoon he has been complaining of a sore throat! This morning his throat was hurting him quite a bit as well as he had alot of drainage going into his stomach and bothering his stomach so I decided to keep him home today so he could rest. I am going to wait and see how he does the rest of the day before I decide about tomorrow.
We are having alot of issues with the school right now. They do not want to put him on the 504 plan that he needs to be on for his medical and educational needs to be met. The principal said yesterday that if he were to be put on that plan then "they would not receive any money from the state for him." As you can imagine we are not real happy about this. With the help of some friends I have done some research on the 504 plan and will contact the superintendents office probably tomorrow with the information that I found out. Hopefully his attitude will be different than the principal. Please keep us in your prayers that we may be able to get the stuff worked out with the school and also Joey that he may feel better real soon. Thanks.
Martha
Saturday, September 4, 2004 9:11 AM CDT
Good morning everyone! Just wanted to let everyone know that Joey woke up feeling good this morning. He is not coughing and he does not have any cough med in him. He is just a little stopped up but he is acting like he feels good. He is walking around singing! :-) As congested as he was the last 3 days I am amazed that he seems fine today. As much better as he seems today I will be surprised if I hear anything from the doctor on his cultures. We really expected to with the way he sounded the last few days.
Well the kids seem to think they need to eat this morning so I should go for now. Have a great weekend!
Martha
Thursday, September 2, 2004 4:22 PM CDT
We had a long day in the clinic. Everything went fine. His counts were ok and he got his monthly IVIG infusion. The only down side of the day was he had to be in "isolation" because of the shots he got 2 weeks ago to HOPEFULLY prevent him getting the chicken pox. He HAS to wear a mask anytime he has to leave the room for ANYTHING. He has to be in isolation for a month after receiving the injections both in the clinic or at the hospital if he were to get admitted. He actually did very well with it and did not even ask to go into the playroom. We had taken his backpack full of movies etc and that kept him occupied. The other thing besides the shot he received being a risk to the other kids, he also had a real nasty cough that did not need to be shared with the other kids with no immune systems. The dr had a chest xray done and feels it is most likely a virus/bad cold. They did take some blood cultures and if it grows ANYTHING (meaning he has a bacterial infection) then he will immediately be admitted for IV antibiotics. It could take up to 2 days to know anything from that. The lab alerts the dr anytime day or night if something starts to grow. We have been called at 2 am to bring him in to be admitted because his culture was growing something.(hopefully that will not happen again) Dr. Wilkinson gave me a prescription for some robitussin with codeine in it. It seemed to work pretty well when he had it at the clinic. He still coughs some but not near as much! Hopefully he will sleep better tonight. He did not get much last night because he kept waking up coughing. I have to call her back immediately if his breathing gets labored/shallow, the coughing gets worse or if the medicine she gave him still does not control it enough for him to sleep or if he spikes a temp( which I knew that already :-) )
I should go for now and get these kids refocused on their homework. I will update again if anything changes. At this point it really does not look like we will be able to leave town this weekend. The only way we would consider it is if we got to Saturday and his cough was significantly better and we had still not heard anything negative from his blood cultures.
Martha
Wednesday, September 1, 2004 11:34 PM CDT
GOOD NEWS....He DOES NOT have the chicken pox! The suspicious looking bumps he had last night were gone this morning. The sore was still there but it looked better. I took him by the school nurses office and she said it was not the chicken pox. He has not gotten any new spots during the day today. We saved a trip to the HO clinic and hospital today!! :-)
The BAD NEWS is he still has a NASTY COLD and sore throat! I kept him home from school today and church tonight so he could rest. He has his normal monthly count, check up and IVIG appointment tomorrow so I will ask the doctor about it then. Though I am not sure how much sleep we will all get before then...he keeps waking himself up by coughing and I have given him medicine.
I am going to try to go get some sleep now. I have to have me and 5 kids ready to leave here by 7:15 am. We will take the 4 oldest to school and Joey and I will head to the dr.
Martha
Tuesday, August 31, 2004 11:27 PM CDT
We are suspecting that Joey may be coming down with the chicken pox. When he woke up a couple of hours ago he had a few suspicious looking spots. (one looks like a blister and the other 2 look like they could be heading that way) I talked to the HO doctor on call and he gave me permission to wait til in the morning to bring him since he does not have fever and just a few spots. If at any time during the night he spikes a fever or gets a bunch more spots then we will have to go in during the night....otherwise I just have to take him in first thing in the morning. I will take the other kids to school and then take him into the clinic. Atleast Dan has a normal type work schedule to where we should be able hold things down at both the hospital and home for a few days and he is also off the whole weekend. Please keep Joey in your prayers that if this is chicken pox that he will have a mild case. I will update again when I know more.
Martha
Saturday, August 28, 2004 1:17 AM CDT
CHICKEN POX WATCH - The chicken pox watch has now begun. Today (Saturday) is 10 days after he was exposed at school. He was awake for some reason tonight just a few hours after he went to bed and to sleep, but I think he is back asleep now. (I HOPE!) Starting today, I was told to keep a very close eye on him for ANY signs of fever and/or spots...no matter how slight of a case. Even the mildest case WILL automatically end him up in the hospital...which we don't want! He is allowed to go to church and school, but we just have to watch him closely. Hopefully the injections he received last Thursday will protect him from getting the chicken pox!
A couple of days this week he had real rough days at school from a behavior standpoint. The honeymoon phase has worn off and the testing phase has begun. We knew there would be issues at some point as he got back into going to school. After all , he has never been in a classroom with 20 other kids before. Today was alot better for him. We are hoping that time and also the fact that he knows his mom and his teacher are in close contact with each other will fix any further problems that we might have. From an academic standpoint, he is doing very well so far. The work is very easy for him (which we expected). His math homework that he brings home everyday is usually completed in 5 minutes or less. Even after 2 weeks, he is still exhausted when he comes home everyday. Most days he takes about a 2 hour nap after he gets home (with me having to wake him up at that point) He still goes to sleep immediately at night and sleeps all night (well until tonight anyway :-) )
I am going to check on him one last time and get back to bed myself. (assuming he is asleep) Please keep him in your prayers that he stay protected from the chicken pox. Thank you!!
Martha
Tuesday, August 24, 2004 4:42 PM CDT
Good afternoon everyone! Joey seems to have settled into first grade. He really likes it, but it is still really tiring him out every day. He has been bringing home the homework side of his math paper everyday and he is able to do it in about 5 minutes. He has not started spelling at school yet; however, when the other kids were working on their spelling today he decided he wanted to do some too. I gave him the same list as Jarrett and Selina to work on. He read thru both the 2nd grade list and the 3rd grade list. I plan to give him extra work to do at home to keep him challenged. He likes looking at the work his siblings are doing to see if he can do it too and most of the time he can. He LOVES to read and it is very common that I find him sitting down with a book and actually reading it.
Other than tiring out very easily he has felt pretty good. I have to start watching him on Friday or Saturday for any signs of fever or chicken pox. Assuming he does not break out with chicken pox, our next scheduled appointment is a week from Thursday. (counts and 4 hour infusion of IVIG) Unfortunately since he got those injections last Thursday to hopefully protect him from the chicken pox, he has to be in an isolation room when he is at the clinic instead of being able to be mostly in the playroom. He is not going to be thrilled with having to stay inside a little room for 5 or 6 hours next Thursday!!
I will sign off for now and hopefully I will not have any big news to report until after his appointment next week.
Martha
Thursday, August 19, 2004 6:21 PM CDT
We had a little too much excitement for my taste today. Joey had an appointment this morning to get his counts done. That went well. His counts were fine and we actually were only there about an hour and a half....that is actually a VERY SHORT visit. Anyway we had been home from picking the other kids up from school about 15 minutes and the phone rang. It was the school nurse telling me that one of the kids in Joey's class was out with the CHICKEN POX. I called the clinic and they told me to bring him in RIGHT AWAY to get a shot in each leg. Hopefully that will be enough to protect him from getting them. He is allowed to go to school but I have to watch him very close for any spots or fever starting at the end of next week. If he gets even a slight case of the chicken pox it is an automatic hospital stay for him for a week to week and a half. We are obviously hoping to avoid that. Joey, as you can imagine, was not happy when I told him where we were going and why. However, I explained to him that these 2 shots would HOPEFULLY keep him from getting very sick and ending up in the hospital. After I explained that to him, he was ok and did very well getting the shots. Since the shots contained a "live virus" he has to be in isolation at the clinic for the next 4 weeks. They do not take any chances since all the kids that are seen up there have impaired or no immune systems. Atleast the clinic and hospital are the only places he has to be isolated at. Joey is currently waiting for Dan to come home so we can go get him the bean burritoes that I promised him he could have for dinner! :-) Anyone who knows Joey knows how much he LOVES bean burritoes!!
Joey really enjoyed the first 2 days of school. He really likes his teacher and his new friends. He was a little disappointed that he did not get to go today, but he understands that there will be times he has a doctor appointment or is not feeling well. The last 2 days he has come home VERY tired after being at school all day. Tuesday he ended up crying off and on from the time we got home until bedtime. Yesterday he came home in a similar mood so I put him down for a nap since we had church last night and he would not be able to go to bed early. He took a decent nap and still went to bed and sleep immediately after we got home last night. I have talked to other parents who have kids going thru chemo and their kids tire out real easily also. Hopefully after a couple of weeks he will get a little more used to the routine and it won't tire him out so much. The nurse has said that he is more than welcome to come and rest in her office for awhile if he is either tired or not feeling well.
I should go for now. Dan is on his way home and we are about to go eat. Please keep Joey in your prayers that he does not end up getting the chicken pox. Thanks!
Martha
Tuesday, August 17, 2004 9:17 AM CDT
UPDATE-AFTER SCHOOL- Joey really enjoyed his first day of school! He brought home a little bag that he had to fill with things that he liked. They are doing an ALL ABOUT ME unit and making books about themselves. It TOTALLY WORE HIM OUT...he is EXHAUSTED!! I am thinking he will voluntarily go to sleep earlier tonight. The first thing he wanted to do after school is take a shower and put his pajamas on. I am currently hoping I can keep him awake til bedtime.
Good morning!! Today is the first day of school. Joey did really well. He bounced right out of bed and got dressed. He was a little grouchy for awhile after that (likely because he did not go to sleep til LATE...his choice not mine....I tried), but once we got to school he was fine. He walked right into his classroom and sat down at his desk and got out his schoolbox to start coloring his schoolbus picture. He did not even remotely seemed concerned (the only concern was from me NOT HIM- :-) Atleast I got a hug and he told me "bye Mom...see you after school." (That is alot more than I got from my 5th grader!) I have a meeting with Joey's teacher, Mrs.Massey, tomorrow at 12:30 to let her know a few more specifics regarding Joey and his treatments for leukemia. His teacher seemed a little nervous when I told her he was taking chemo for leukemia. Hopefully she will feel better after we meet tomorrow. Joey has a Peanuts video where one of the kids is diagnosed with leukemia. It is pretty informative and easy to understand. If his teacher is interested I am going to offer to let her borrow it to show the other kids in Joey's class. I have not found out the specifics about Joey's testing yesterday, but you could tell the counselor was IMPRESSED with his knowledge.
Unfortunately, he has to miss his first day of school on Thursday. He has an appointment to get his counts checked. It is a short appointment but they did not have any open appointments late morning so he could atleast go for a little while. The receptionist at the dr office suggested making his count appointments several weeks ahead so I can get the time that I want and he won't have to miss as many days. Once a month, when we have his long appointments, he will have to miss since those appointments take about 5 or 6 hours total. Hope everyone has a good day! I will update again on Thursday after his appointment.
Martha
Friday, August 6, 2004 3:00 PM CDT
Joey's appointment yesterday went really well. His spinal tap (aka "back stick") went MUCH MUCH better than the previous 3 that he had had done. Up until the last 3 he has always done very well with them. The last 3 have been nightmares for him. (One of the other doctors in the clinic had done all 3 of them-numerous repokes and very unpleasant experiences for Joey) When I scheduled yesterday's appointment I MADE SURE that his regular doctor was going to be there. I even asked when I got there to be SURE Dr. Wilkinson was there. Thankfully she was and she was the one to do his spinal yesterday. It went TONS better...one poke...She was in and out fast and we were done. He seemed TONS more relaxed yesterday when his regular doctor came in the treatment room to do the procedure!!! The good news is .....WE ONLY HAVE ONE MORE SPINAL TAP to go! He also got his montly IVIG and that went fine also.
His counts that had been a little elevated the last few times were back where the doctor wants them. His liver function test was fine as well so he gets to continue his by mouth medicine for his ringworm (atleast for the next 2 weeks) Unfortunately since the ringwom is on his head and he is considered to have an impaired immune system...because of the chemo...the doctor said he would very likely not be able to totally get rid of it until he finishes treatment. (That is why he will have to wear a hat at school...besides it will be beneficial since he is not suppossed to have extended time in the sun because of the chemo he is on ) The Sporonox (the $300 med that he takes by mouth really keeps it under control if his liver functions would cooperate so we can keep him on it for awhile)
I should get this posted. His next appointment is Thursday the 19th for counts....2 days after school starts he will already have to miss most if not all of a day :-( I could not get him a late enough appointment to where he could go for atleast the morning. I will be busy this next week trying to get everyone ready for school so I will likely not update again until Tuesday the 17th, after his first day of school.
Martha
Monday, August 2, 2004 10:33 PM CDT
Good evening! Joey seemed to feel real good today. His throat is still hurting a little bit but he is still eating fine and he has not had any fever. We went today to start the registration process to get he and Jarrett into school. I picked up the paperwork today and once I return it am suppossed to set up a time to have the boys tested and to set up a meeting with both the principal and his classroom teacher before school starts. I talked with the new nurse at length today about Joey's needs and she seems very willing to work with us on anything that he needs. She has promised to let me know personally if there are any major communicable diseases going around the school (chicken pox, fifths disease etc- The reason for this is if he were to get anything like that it could make him very very sick ) His next appointment is Thursday and he will get counts done, his monthly IVIG infusion and a spinal tap. (This is about a 5-6 hour appointment) By Thursday, when I update again, hopefully I will have more information about where we are at in the process of getting him into school and making sure his needs are met. I do know that he will HAVE to wear a hat at all times...both to protect him from the sun when he is outside and to protect others from the ringworm that he has on his head. (The principal has already agreed to this). Until next time....
Martha
Saturday, July 31, 2004 11:53 AM CDT
Joey woke up with his sinus' rattling a little bit , a sore throat and coughing (from the sore throat). He mostly acts like he feels pretty good. He is starting to lay around some again like at the beginning of the week but he is fine for now. His counts were good on Thursday so hopefully he will be able to fight of his cold with no problem.
Go check out his photo page. I updated it last night with 3 pictures that were taken of him at camp. His camp counselor sent me a bunch so check back every few days for new pictures. :-)
Take care.
Martha
Thursday, July 29, 2004 5:03 PM CDT
Saturday, 1:18 AM- Just wanted to let everyone know that I finally got some of Joey's pictures from camp into his photo album....Go take a peek!! I was sent a bunch of good pictures so I will probably swap them out every few days (until I get thru all the pictures) Joey seemed to feel pretty good all day Friday. We just took it easy around the house like we plan to do tomorrow as well. He discovered that he has another loose tooth! :-) It is his other front bottom tooth. (When I checked it last week when I pulled the first one it was not loose yet) Within a couple of days he will be without both his bottom 2 front teeth! :-)
Good evening everyone! I promised I would update after our appointment so here it is. Joey is FINE. All his counts were good. The nurse practioner and I are thinking it was either something viral or just his body's way of saying "You have put me thru enough and I need a few days to rest and recoup!" One major positive about our appointment today was I got permission to put him back on his by mouth medicine for ringworm. His liver function was still high but it was down enough to put him back on his med atleast temporarily. He will have his liver functions tested at every appointment to make sure the numbers stay in an acceptible range. There is a very good possibility that he will only be back on it temporarily before they get too high again but hopefully it will atleast help during the periods we can use it. I should go get busy. I have plenty to do since I was gone from home for 7 hours today....and to think it was suppossed to be a SHORT appointment.
Martha
Wednesday, July 28, 2004 12:01 AM CDT
4:07 PM- I just wanted to let everyone know that Joey has an appt tomorrow morning at 11 for an exam and to get his counts done.
Good afternoon! Not much has really changed as far as how Joey is feeling. He only ended up getting sick the one time yesterday. He also had a low grade fever for a couple hours but then by evening he acted like he was feeling fine. So far today he has mostly been laying around and he just started complaining his stomach was hurting him again. I am currently waiting for a call from the nurse to see if i need to bring him in sooner than next Thursday to get his counts checked. I will very likely keep him in from church tonight and put him to bed early. He is currently laying on the couch watching KARATE KID.
Til next time...
Martha
Tuesday, July 27, 2004 7:44 AM CDT
Good morning! Well it looks like yesterday was "too good to be true." He woke up feeling today like he felt most of the weekend until Sunday night. He was totally fine from Sunday night -all day yesterday. He woke up crying with his stomach a little after 7 this morning and he just got sick. I am about to shower and start showering kids...it looks like we are in for a clinic day. I will be SHOCKED if they do not have me bring him in. I will update when I know more.
Martha
Monday, July 26, 2004 11:05 AM CDT
Hi! I just wanted to let everyone know that Joey seems to be feeling much better and he does not have fever anymore. :-) I tried to upload some of his camp pictures to his photo page and for some reason I had a problem. Hopefully Dan will be able to help me with it tonight. (He said it had something to do with the pictures being scanned in) Once we figure out the problem with the scanned in pictures then I will probably update the pics every few days so you can see all the fun that he had at camp.
I better get back to the laundry and housecleaning that we are working on today.
Martha
Saturday, July 24, 2004 8:48 PM CDT
Hi everyone! Joey has felt kindof crummy during the day today, but seens better this evening. One of his counselors from camp sent us a bunch of pictures of Joey at camp. In most of them he is wearing a bandana on his head instead of a cap. Today he wanted to wear one to go to Walmart and since then he has decided that he prefers bandanas to caps! :-) Thanks for checking in.
Martha
Friday, July 23, 2004 3:52 PM CDT
Joey has not felt too great for the last several hours. He is running a low grade temp and laying around on the couch watching tv. Hopefully this won't turn into anything any worse. I do not have to call the dr until it gets up to 101. Please keep him in your prayers that he may be able to fight off whatever is wrong. Thanks.
Martha
Sunday, July 18, 2004 1:48 AM CDT
UPDATE- MONDAY-3:30PM - Joey lost his first tooth today. See above picture. The pictures on the photo page have all been changed out too. They were taken yesterday afternoon after we got home from church. Go take a peek. :-)
Hi everyone! Sorry it has taken me so long to update again. The kids all really had a great time at camp a 3 weeks ago. Things have been pretty busy around here but hopefully things are in the process of calming down since camp is over and we are all back home again. Joey had a dr appointment on Thursday that went fine. 3 weeks ago his counts were a little on the low side and this visit they were a little on the high side. The doctor did not seem worried about it though. It is common for counts to fluctuate and I figure if they stay high for too long he will get his chemo upped again. He also got his montly IVIG to help his immune system. Since he got back from camp he has felt pretty good for the most part. The leg pains he was having have really improved. He complains a little bit occasionally but he has not missed too much sleep and it has not slowed him down in his activities the way it was before he went to camp from his Vincristine injections that he had just received. We go back 2 weeks from this Thursday. (August 5) At that point he will get his counts done, get IVIG again and get his second to last spinal tap. He was suppossed to go back in 2 weeks for counts, 3 weeks for a spinal and 4 weeks for his montly IVIG. The nurse practitioner was nice enough to ask the dr if we could just do all of those things at the Aug 5 appt instead of having to come back 3 weeks in a row. I was very thankful for that!
I better sign off for now. It is very very late and I should get some sleep before having to get up for church.
Please sign the guestbook if you get a spare minute. :-) I hope to get some new pictures up in the next few days.
Martha
Monday, June 28, 2004 1:47 PM CDT
Sorry it has taken me so long to update after his appointment this last week. Things were absolutely crazy last week trying to get the kids ready to go to camp. Dan and I were up til 2 am on Sunday morning getting all their things labeled and packed.(which gets pretty time consuming when you have 5 kids- LOL) After church yesterday we took the kids up to the hospital to meet the buses. They will be gone until Friday morning. The last 24 hours without them has been very strange! We both miss them alot! I know they are having a great time!!
Joey's dr appointment on Thursday went fine. His ANC (ability to fight infection) was only a little over 800. They really like it to be between 1000 and 1500. The good news is that it was not low enough that they had to stop his chemo or put him in isolation at home (which would have meant he could not go to camp. He did not seem to feel that great yesterday but I think he was afraid to tell me exactly what was wrong ( I figure he was afraid we would make him stay home ) I know there is a dr and several nurses there all week so I figure he is well taken care of. His primary doctor will be there tomorrow afternoon for the rest of the week. We will go back 2 weeks from Thursday for counts and his monthly infusion of IVIG (to help his immune system). We actually got 3 weeks off this time. :-)
I better sign off for now.....until next time...
Martha
Thursday, June 17, 2004 7:06 PM CDT
Joey had an EXCITING DAY at the clinic. When we got there at 10 there was a film crew there from PBS doing a documentary on the hospital and clinic where Joey is being treated. Joey got interviewed and also filmed several times throughout the day doing different things. The doctor used Joey to show the crew how an exam is done and before we left they came in to film while Joey was getting his port deaccessed ( needle taken out ). Joey was more than willing to let them follow him around or talk to him as much as they wanted to. LOL...my child the actor....
From a medical standpoint, his appointment went fine as well. He did not get his counts done today since he had just had them done last week and they were good. He received his IVIG (stuff to help his immune system). He also received his follow up chemo injection today. He only has ONE MORE steroid pill to take tonight. YEAH!! Unfortunately the effects from the steroids will take another week or so to wear off and the leg pains from the vincristine can take as much as a couple of months to wear off. I just hope he feels ok at camp week after next. I found out his doctor that he is used to will be covering the 2nd half of the week and so I know that he will be well taken care of if there is a problem.
Joey will go in to the clinic next Thursday for counts and an exam since he will be leaving for camp a few days later.
Martha
Tuesday, June 15, 2004 2:19 PM CDT
Joey has not felt too good since he got his injection of Vincristine and started taking his steroids on Thursday of last week. His legs have been hurting him quite a bit and thru Sunday he also had a stomach ache to go with his leg problems. Since he felt so bad over the weekend, we went thru the Drive thru at Rosa's and got him 2 bean burritoes yesterday evening....anyone that knows Joey understands how HAPPY he was with that! He has not had a full night sleep since Wednesday of last week. You mix no sleep with steroids and leg pain and you do not have a pretty sight!! We both catch sleep here and there (mostly if he is right in the middle of having tylenol in him) I got permission from the clinic to alternate motrin with the tylenol. We are normally not allowed to use motrin without permission because Motrin effects platelet counts (which his were really high last week so we were fine from that stand point). He can also not have motrin anytime around when he takes his weekly methotrexate (on Friday night) I am allowed to alternate motrin with tylenol thru Wednesday night but starting Thursday he won't be able to have it again for a few days because of his weekly methotrexate. We are hoping he will be starting to feel better when he goes to camp a week from Sunday. All his meds will go with him so they will have them if needed. If he were to feel too bad they would call us to come get him (which hopefully that will not happen).
I have to brag on him from an academic standpoint. On Sunday he sat down with some markers and a notebook (one of his favorite pasttimes is drawing) and instead of drawing wrote several SENTENCES about going to camp and our family....He did this without any help from anyone and made very few spelling mistakes. Considering he will just be starting first grade in August, I was pretty impressed. He also came into my Bible class with me on Sunday (I teach 1st -3rd grade) and was able to do the work fine with very little help despite the fact he was half asleep from being up all of Saturday night. He will officially move up at the beginning of July. (We are moving up his brother Dustin and a couple of other 3rd graders to a different class so there won't be 10 kids in there.) He is excited about moving up into the "big kids" class with Jarrett and Selina who will be in 2nd. The amazing part of all this is that when we adopted him the doctors from the state that had tested him said he had "borderline intellectual functioning" and "would always need special assistance and classes in school." Anyone that has met Joey knows that this is not the case! I think he would likely be alot more advanced than he is if he had not gotten sick and done very little academically during the 2002-2003 school year.
Joey has his other vincristine appointment on Thursday. He will also get his 4 hour IVIG infusion to help his immune system. Which the amazing thing is, despite taking chemo for ALL he is probably the healthiest person in the house. There have been numerous times during his treatment that someone else will get a bug of some kind and despite it going thru several people it rarely hits Joey. The last time he was sick enough to be hospitalized was last June...exactly a year ago. We have been very blessed that he has not had the continuous hospital stays that most kids going thru treatment have. Most kids going thru the same things that he is are in and out of the hospital the entire way thru treatment. Alot of people tend to forget that he still has another 9 mo of chemo since he looks good and does not have to miss out on church and other things very often.
One last thing I almost forgot to mention. Many of you know of the continual problems he has had with ringworm for the last year. He had to be taken off his by mouth med for it a few weeks ago. I have had to keep his head shaved to be able to put the topical med on it and that still was not totally taking care of the problem. Last Thursday, the nurse practitioner told me to use Selsun Blue shampoo on his head twice a week. We did it for the first time on Saturday and despite the fact that Joey was NOT impressed because it stung so bad it has made an AMAZING difference in what it looks like. I actually am now thinking we may have hope to keep it controlled even if we can not put him back on his by mouth med for it. (As of Thursday his liver function was still way too high-normal between 20 and 45 and his is still over 200)
I really need to go now. This entry has taken me almost 2 hours to do with numerous phone calls and children interruptions.
Signing off til probably Thursday afternoon/evening after his appointment.
Martha
Please keep him in your prayers for the next couple of weeks til he gets over all his leg problems and until he finishes his chemo. He should hopefully only have one more spell where the chemo makes him feel real bad like this.
Thursday, June 10, 2004 7:27 PM CDT
UPDATE-1 AM FRI-The legs pains are already starting to kick in. He woke up complaining just 8 hours after receiving his injection. He was fine just an hour and a half before that. He is sleeping for now (probably until I get to sleep good) so I should probably get some sleep while he is.
Well Day 1 of Vincristine/steroid week is almost over. Joey got his chemo (Vincristine) and will start his steroids tonight at bedtime. Right now he is still feeling fine. My guess is it will kick in sometime during the night or tomorrow.
His counts were back down in the range they want them in so he did not get his daily chemo upped. The did another liver function test and unfortunately the number was still too high to start him back on his by mouth med for his ringworm. So for now we will continue with the topical stuff (meaning i have to keep his head shaved to get it on there good) and she also gave me something else to try.
I think for now that covers the news. Atleast Joey has camp to look forward to after this 2 weeks of pain and nausea.
Martha
I put a red background because he told the nurse that was his favorite color....today anyway...he changes his favorite color about as often as he changes his clothes :-)
Thursday, June 3, 2004 4:01 PM CDT
We just got back from the clinic a few minutes ago. Everything went ok for the most part. For some reason his counts are VERY high again. His ANC that is suppossed to be between 1000 and 1500 is now over 5000. We actually got lucky enough to see his regular doctor today and she said if they are still high next week that we will up his daily chemo at that point.
Unfortunately the dr we saw 2 weeks ago did not order a liver function test for today like she was suppossed to so we were not able to start him back up on his by mouth med for his ringworm. I am suppossed to keep putting the cream on it twice a day for the next week and we will reevaluate everything next week.
He will have appointments the next 2 Thursdays for a chemo injection both days and steroids in between. (That is NEVER a FUN time frame) He will likely be in a really lousy mood for about 2-3 weeks.
Martha
Sunday, May 30, 2004 0:47 AM CDT
I am sitting here in Houston writing this update with Joey sitting beside me. Yes, it is almost 1 am and Joey is STILL AWAKE. His legs and feet have REALLY been HURTING him since about 4 this afternoon. He typically hurts some on Saturday just from the chemo he receives on Friday night. Today he has been VERY ACTIVE and has done alot of running and now he is really paying for it!!! He had a dose of Tylenol with codeine at 9 and again at 12 and he is still awake hurting. I also gave him a warm bath about 11 (that sometimes helps). He said it felt good, but did not help enough for him to fall asleep.
I am not sure at this point what the rest of the night holds for us.....I am not real encouraged at this point. It is just not fair that a 6 year old should have to hurt so much after he spends a few hours runnning and playing like any other kid his age.
We have another problem that is currently bothering him. His ringworm has done a MASSIVE flare up. He had to be taken off his by mouth ringworm med about 4 weeks ago because his liver function numbers were too high. The numbers were alot better at his last appointment but the doctor wanted to leave him off if til his next appointment (next Thurs) to see if we could get the numbers done a little more. I knew he had a couple of small spots on his head but they were mostly hidden by his hair. Since I really needed to put topical med on them I gave him a short buzz cut on Friday morning. When I did I was shocked to find out that his head was covered with ringworm spots. To be able to get to the spots the best way possible we thought it was best to shave his head. He was THRILLED when I did that today. He loves it and thinks he looks COOL. :-) Now Dustin and Jarrett both want me to shave their heads too!! (LOL We have not decided on that one yet)
I should go for now. It is 1:20 am and I am going to try again to see if I can get Joey to sleep.
Martha
Monday, May 24, 2004 5:05 PM CDT
Sorry it has taken me awhile to update from our appointments last week. Joey had his appointment at the HO clinic on Tuesday. His counts were done and at that point were fine. However, he also had a spinal tap and those typically cause his counts to fall quite a bit thus making him more susceptible to infection.(that usually happens about a week later) If I can keep him well until next Thursday, that is when his next appointment is. He has been complaining of a sore throat all day so hopefully that will not go into anything. He also had his IVIG infusion (immune booster)
On Friday, he went for his followup appointment with the urologist and was released.
The 3 school kids are out as of noon on Thursday. On Friday we will take Dan to work and pick him up. We will head straight to Houston as soon as we pick him up at 4:40. We will be gone until Monday. Our nephew Keith is graduating from High School on Friday night. CONGRATULATIONS KEITH!
Unfortunately, we will not be in town early enough to make it to graduation, but atleast we get to spend the rest of the weekend with family.
Unless something major happens in the next week and a half I will likely not update again until after his next appointment. Have a great week!
Thursday, May 13, 2004 3:39 PM CDT
We unfortunately were not able to make it to Joey's HO appt today. Jason came home from school sick on Tuesday and was still running fever thru this morning so he was unable to go back to school today. (hopefully tomorrow) I could not take him up the the HO clinic running fever and I was also unable to find someone to watch him. Joey's appointment for his spinal tap and IVIG will be Tuesday morning at 9. He has his follow up with the urologist next Frday at 1:45. I am just hoping he does not catch the bug that Jason has had the last couple of days.
He and Jarrett have their last soccer practice tonight at 5:30 and their last game is Sunday afternoon at 3.
We recently decided to put him into 1st grade in the fall instead of 2nd. First is where he is suppossed to be going and we feel that since he will be missing quite a bit especially the first half of the year that it will be best that he is ahead. We think he will be able to handle 2nd grade work by the time school starts but we do not want him to have to struggle because he is missing for appointments and such. Socially he will be better off in 1st grade as well.
The next update will likely be on Tuesday sometime.
Hope everyone has a great weekend.
Martha
Monday, May 10, 2004 11:56 AM CDT
We had a really good time at the Texas Rangers game on Friday night. I posted 3 new photos on the photo page that were taken at the game. Joey has a long appointment at the HO clinic on Thursday for a spinal tap, counts and his monthly 4 hour infusion of IVIG (to help his immune system).
I will update again after that.
Friday, May 7, 2004 2:53 PM CDT
We are about to head out to do a few errands, pick Dan up from work and head to the Texas Rangers game. The HO clinic was given 80 tickets to pass out to some of the families to enjoy the game tonight. There is also a picnic of some type before the game in the stadium. We are all really looking forward to it.
Joey came home from his soccer game last night with a rash. We are assuming heat rash of some sort. I talked to the nurse from the HO clinic and she said to keep giving him benadryl and watch him just incase he starts running a fever or the rash spreads. So far he is fine....just a little itchy.
Well I better run for now. I plan to take some pics of the kids at the game tonight and hopefully will get some posted tonight or in the morning.
Martha
Wednesday, May 5, 2004 7:45 PM CDT
Joey has been a little under the weather today. He woke up sick to his stomach around 4 AM. That was the only time he actually got sick, but he has felt pretty nauseated all day. He also had a low grade temp this afternoon so he and I stayed home from church tonight. Since he was not feeling well I postponed his followup with the urologist that was suppossed to have been this morning. Hopefully he will feel better tomorrow and be able to play in his soccer game tomorrow evening.
Martha
Saturday, April 24, 2004 1:18 AM CDT
Joey has made big improvements. The swelling, bruising and pain he has been experiencing have greatly diminished. He actually today came pretty close to acting "normal" for him. (and that is mostly without any pain med or even regular tylenol...well we are still using the numbing/antibiotic cream) He is disappointed that he can not play in his soccer game tomorrow, but I really feel by next weekend at the latest he will be ready. The key from here is to keep him from bouncing off the walls before he finishes healing and his stitches come out. (That might be quite a chore :-) ) Well I better get to bed and get some sleep. Our first soccer game today is at 9 (weather permitting).
He goes to the HO clinic on Thursday for counts and the following Wednesday he has his follow up with the urologist. Neither of those appointments should take long. However the Thursday of the following week he has a spinal tap, counts and his monthly IVIG. (about a 5+ hour appointment)
Wednesday, April 21, 2004 12:40 PM CDT
Joey has not been feeling too good since his surgery. He prefers, if at all possible, to just wear a big tshirt with no underwear. He has been VERY CAREFUL if Selina is home to make sure he sits with a blanket over his legs so she won't "see anything." (atleast he is modest :-) ) He still has alot of swelling, bruising and pain! (which the doctor said was very normal) He has been a pretty miserable little guy for the last 2 days. He has his follow up appointment on May 5 and he should be all healed by then :-) I really feel like we will start seeing signs of improvement within the next week or so. He has enjoyed having everyone wait on him. His brothers are more than sympathetic to what he is going thru!! He is out of soccer atleast thru the weekend. We will play next week/weekend by ear. He was disappointed about missing soccer at first but after I explained this is only temporary he got a little happier. He is having trouble doing much walking right now. I definately do not think trying to run in a mob of kids with a ball flying around is a good thing. I should go for now and get some schoolwork done with Jarrett while Joey is sleeping. The picture above was taken today after Joey fell asleep on the couch. It shows how bad he had to be feeling to fall asleep on the couch with the tv on and all the noise his brother was making.
Monday, April 19, 2004 5:30 PM CDT
We just got home from the hospital about 30 min ago. His surgery went fine. Unfortunately the dr was not able to start his surgery til around 2:00 instead of 12:30. Luckily, Dan was able to leave work early to be here when the kids got off the bus. Joey will probably be lying around for a few days. The dr gave me some Neosporin that has numbing med in it to use 3-4 times a day and also some pain medication to use as needed.
I need to get Jason to practice. I will update more later.
Friday, April 16, 2004 12:47 AM CDT
Joey has had an eventful week. We had an appointment with the urologist on Tuesday morning. He has an appointment on Monday of next week to be circumcised. It will be done as outpatient surgery and we should only be there 2-3 hours (at the most) from start to finish. He is not at all nervous about it. He knows exactly what is going to happen and his only response was ..." I do not care what they do just as long as they put me to sleep first!" I really think this probably seems pretty minor in his mind after all he has been thru for the last year and a half. A couple of his brothers were a little more spooked about it than Joey was! LOL
Joey had his regular appt at the HO clinic on Thursday. His counts were good. His ANC was 1342 and the dr wants it to stay between 1000 and 1500. Hemoglobin and platelets are also both in the "normal" range. The only concern was his liver levels are very high. The methotrexate (his weekly chemo med) and his Sporonox (that he takes once a day for his ringworm) can both cause this. She is hoping that is all it is. She left his meds the way they are for now and when we go back in 2 weeks if they are still that high she will take him off the sporonox for a couple of weeks to see if that makes any inpact. She actually mentioned several times that she was very concerned about his liver levels and that we NEED to get them down , but did not go into any more detail than that.
I will try to update again on Monday evening after his surgery.
Friday, April 9, 2004 10:57 AM CDT
Good morning everyone! I just thought I should get on here and update since it has been over a week now. Joey has been feeling pretty good for the most part. He has been fighting a cold and sore throat since he got up on Tuesday morning, but so far it has not gotten any worse than a cold. (Thankfully his ANC is high enough to be able to fight this off) We actually had a week off from appointments. Next week he goes to the urologist on Tuesday for some circumcision issues we are having (atleast that is the best guess as to what it is for now). Thursday he has his 2 week appointment at the HO clinic. He will get counts done and also his 4 hour infusion of IVIG (to help his immune system).
We were not able to make it on our fishing trip last weekend. Dustin got sick and so he would not have been able to go. Dan did not want to take the rest of the kids because that would have left me without a vehicle for the weekend since his car was in the shop (an unexpected $1200) The kids were disappointed at first, but then quickly got over it when most of them got to play in their soccer games on Saturday.
Joey and 3 of the other kids are all looking forward to going to Camp Sanguinity this summer. It is a camp that is for kids undergoing some type of cancer treatment and their siblings. At this point Jarrett is not convinced that he wants to leave home for 5 days despite the fact that he has watched the video and has seen the activities the other kids will be participating in. The current plan is Jarrett and I will go to Colorado to visit my family and Dan will stay here to work and go to school and just incase there is an emergency with any of the kids that are at camp.
As of now we are considering putting Joey in school with the rest of the kids in the fall. Of course this is assuming he does not have any surprises healthwise this summer and the school understands that he will have to be absent whenever he has an appointment or his counts fall or he is sick. I am not sure at this point if we will try to get him in First Grade or Second Grade. Technically he is suppossed to be in 1st in the fall but he is already well into his 1st grade material and will probably be on a 2nd grade level in all areas by the time school starts. The boys will both have to be tested before school starts. We are just going to play everything by ear at this point.
I should end this and get to the bank. I will plan to update again atleast by Thursday next week.
Thursday, April 1, 2004 9:37 PM CST
Joey's appointment was easy today. The only thing he had done was getting his blood counts checked. His counts were right where the doctor wants them. The ideal range for his ANC (white count multiplied by segs/neuts %) is between 1,000 and 1,500 and his was like 1,260 today. The ANC is the number that shows his ability to fight off infection. They want it within that range so it is high enough to fight off infection and low enough to where they can tell the body is absorbing the chemo he is getting.
We leave at 3:00 tomorrow for our weekend at Lake Whitney. The lodge there is sponsoring the weekend for 11 families from Joey's HO clinic. The kids are very excited that they get to learn how to fish. I hope to get alot of pictures and hope to actually get some posted by the beginning of next week. ( I am going to pin Dan down and make him take time to help me get them on here! LOL) Till next time....
Monday, March 22, 2004 9:31 AM CST
Just wanted to let everyone know that Joey's hearing test that he had this morning went perfect. He could hear EVERY sound she gave him. Now I know there is nothing wrong with his hearing and he should be able to hear everything I tell him. However, he is like every other 6 1/2 year old kid and has SELECTIVE HEARING at times.LOL He had an excellent attention span during the test which helped him finish very quickly.
He is really doing very impressive schoolwork these days. Yesterday he read some stories that had blends in them that we had not even covered yet. He is about to be keeping Jarrett on his toes. They are now in the same reader though Joey is just starting and Jarrett is about finished with it.
He still continues to do much better with his leg and back pain since he got his neurontin dose upped from 3 pills a day to 4 (1 in the morning, 1 at lunch and 2 at bedtime)
He does not have any more scheduled appointments until next Thursday. (the day before we leave on our fishing trip to Lake Whitney-see previous entries for details) Hopefully between now and then I can get some more pictures posted.
Martha
Saturday, March 20, 2004 9:29 PM CST
Just a quick note....Since Joey had his Neurontin upped on Thursday when we went in, he seems to be feeling alot better.
He goes in bright and early on Monday morning to get a hearing test done. It is mostly a precaution since some of the chemo can cause hearing loss. I am not sure how long it will take to get the results back. Til next time...
Thursday, March 18, 2004 10:23 PM CST
Joey had a doctor's appointment today. It was fairly uneventful though it was very long. He had his counts done and also got a medicine thru a 4 hour IV to help his immune system (IVIG). His ANC (white count X segs/neuts % -ability to fight infection) was up to 950 today from 912 last week. (They aim to keep it between 1000 and 1500 ) The only thing that was drastically different today was his platelets really shot up from 330,000 last week to 583,000 this week. "Normal" is between 150,000 and 450,000. I am not sure if elevated platelets means anything significant or not. The nurse is the one who brought me his paper right before we left and I did not see the doctor again. She adjusted his meds a little bit to see if we could get the leg/back pains under control. He has really felt pretty rotten for the most part this week. I guess we will see how he feels tonight and all day tomorrow before we determine if he is able to play soccer on Saturday. We are not scheduled to go back for 2 weeks and that should be a short appointment (getting a CBC only).
Oh I almost forgot. He is back to being "bald" again. It was thinning pretty good and on Tuesday he bugged me all day to "shave it" because he did not like picking hair off his pillow and clothes.
The first weekend in April we are going to Lake Whitney (about an hour away) It is a trip that the lodge there gave to 11 families from the HO clinic. Everything is paid for. There is actually a charter bus leaving from the hospital on Friday around 3 and coming back early Sunday afternoon. Since Dan will have to work on Friday, we will drive our van down on Friday evening. We will spend the day on Saturday fishing and boating and having a cookout (cooking the fish they all catch) We will plan to leave on Sunday morning in time to make it to church somewhere close to there. It should be a nice weekend.
Till next time...
Thursday, March 18, 2004 9:22 PM CST
Joey had a doctor's appointment today. It was fairly uneventful though it was very long. He had his counts done and also got a medicine thru a 4 hour IV to help his immune system (IVIG). His ANC (white count X segs/neuts % -ability to fight infection) was up to 950 today from 912 last week. (They aim to keep it between 1000 and 1500 ) The only thing that was drastically different today was his platelets really shot up from 330,000 last week to 583,000 this week. "Normal" is between 150,000 and 450,000. I am not sure if elevated platelets means anything significant or not. The nurse is the one who brought me his paper right before we left and I did not see the doctor again. She adjusted his meds a little bit to see if we could get the leg/back pains under control. I guess we will see how he feels tonight and all day tomorrow before we determine if he is able to play soccer on Saturday. We are not scheduled to go back for 2 weekis and that should be a short appointment (getting a CBC only).
Oh I almost forgot. He is back to being "bald" again. It was thinning pretty good and on Tuesday he bugged me all day to "shave it" because he did not like picking hair off his pillow and clothes.
The first weekend in April we are going to Lake Whitney (about an hour away) It is a trip that the lodge there gave to 11 families from the HO clinic. Everything is paid for. There is actually a charter bus leaving from the hospital on Friday around 3 and coming back early Sunday afternoon. Since Dan will have to work we will drive our van down on Friday evening. We will spend the day on Saturday fishing and boating and having a cookout (cooking the fish they all catch) We will plan to leave on Sunday morning in time to make it to church somewhere close to there. It should be a nice weekend.
Till next time...
Thursday, March 11, 2004 1:28 PM CST
GOOD NEWS !! GOOD NEWS!! Joey's counts are currently down around where the doctor wants them. He did not have to have any more of his chemo adjusted. His ANC last week was 4700 and today it is 910. (1000-1500 is what they aim for) We go in again next Thursday because it is time for his IVIG (med for his immune system he gets thru his port once a month). That appointment should be about 4 hours. After next Thursday, unless there is a problem, we will go back to going every 2 weeks. (we have gone every Thursday for the last 4 weeks)
Hopefully this weekend I will have some more pictures to add to the photo album. Thank you very much for the prayers!
Martha
Tuesday, March 9, 2004 9:53 PM CST
Not much new to report. He seems to mostly be over all the injections he got a few weeks ago. I looked today and he does not get any other chemo in the clinic for another 9 weeks or so when he gets a spinal tap. If his counts are still HIGH on Thursday when we go, they will up his daily chemo that he takes here at home. Unfortunately he has broken out in ringworm again....mostly on his chest/stomach, a few on his face and a couple on his back. I called the clinic and I just restarted his by mouth med back up. He and Jarrett went to soccer practice tonight and are so excited about their first game on Saturday. The funny thing is they are #25 and 26 and Dustin and Selina are 23 and 24 (don't remember which is which)....I will be curious to see what Jason's number is when he gets his uniform on Thursday. I will plan to update again sometime on Thursday after Joey's 10:30 appointment.(which HOPEFULLY won't last long) I plan to take more pics this weekend when Joey has his first game.
Martha
Friday, March 5, 2004 9:29 PM CST
Today was a very good day!!! He acted like he felt really good all day long!! He does not get any more injections for a couple of months so hopefullly he won't have another real bad spell for awhile! He gets his weekly chemo on Friday nights and he does not usually feel good for about 24 hours after he takes it. Methotrexate does not typically cause people to hurt but it always has for him. (no matter what form he takes it in-IV, injected into spinal fluid or pill) I just hope we can get his blood counts under control so it does not have to be upped again. Next week they will up his 6MP that he takes every night and if that does not bring his counts down a few weeks later they will up his methotrexate again. They will go back and forth upping one or the other of these 2 meds every month or so until they get his counts to come down where they want them. Joey had his yearly eye appointment today and we will go pick out his new glasses hopefully tomorrow. (We had to leave his appointment and fly to get Dustin to soccer practice) Soccer season starts tomorrow though somehow I got lucky and only 2 out of the 4 teams have games tomorrow. Joey, Jarrett and Jason are all off til next week. (which none of them are happy about) Of course Selina and Dustin's games are both at NOON in 2 different cities.
Until next time....
Thursday, March 4, 2004 12:28 AM CST
We just got back from an unexpected clinic trip. The nurse was concerned when I talked to her both on Tuesday and Wednesday that he was having so much trouble with his stomach hurting. Dr had a stomach xray done and also his counts and it appears it is just from the injections he got last week and the week before (Vincristine). Despite the fact that he has had one of his chemos upped and that he is no longer on steroids (they tend to make counts go up), his counts are still VERY HIGH. His ANC (which is the white count multiplied by the segs/neuts %) is 4,730 and they really WANT it to be around 1500. He will have his daily by mouth chemo (6MP) upped when we go next week. ( I am not sure why they did not just do it today and save us a trip next week )
Monday, March 1, 2004 0:27 AM CST
Sunday was not a very good day for Joey. It started out ok. He said he was hurting some so I gave him some tylenol. Unfortunately, he did not say anything to me about his stomach hurting. We went to church and as he was leaving class he threw up. I brought him home and changed him and gave him his prescription stomach med. He laid down for awhile and seemed ok. We went to lunch with my parents who were in town visiting. We got him a sprite and he ate some crackers, but was EXTREMELY GROUCHY especially after everyone got their food and the waitress did not bring him CHICKEN NUGGETS (another steroid moment). We came home and he took a 3 hour + nap (which we expected since he did not sleep too great last night). I woke him up in time to get ready for evening services and he said he felt good so we took him. I ended up sitting in the back with him and he ended up sleeping most of the service. He never got sick but the one time and never had any fever so we are assuming it was chemo related. He was asleep by 9 tonight and seems to be sleeping good in there for now.....Hopefully tomorrow will be better. His next scheduled appointment (for counts) is a week from Thursday. If the extreme lethargy continues I will take him back sooner.
Please keep him in your prayers that we are able to get his counts under control. They are very high.(If you want more detail on this see previous entry)
Saturday, February 28, 2004 12:41 AM CST
The vincristine Joey got on Thursday at the clinic has still not kicked in good yet....sometimes it takes a few days. The problem we are having in the mean time is the steroids are not all the way out of his system. He took the last pill yesterday morning, but it can take like a week to get them out of his system. He has thrown some really mean, nasty fits over absolutely nothing the last couple days. We were able to go with our friends to Chuck E Cheese last night to celebrate his brother Jarrett's birthday. Everyone had alot of fun.
Please pray we get his blood counts down. They are way too high right now. The way it was explained to me is his counts have to be within a certain range for the most chemo to be absorbed into his system. If his counts are too high that means not enough chemo is being absorbed into his system. The doctor told me today that his by mouth meds would keep being upped one at a time every few weeks until we get his counts where we want them. Unfortunately one of the chemo meds that he takes at home once a week (methotrexate) he does not tolerate very well. It makes him feel really bad. I better go for now. Thank you to those who have signed his guest book.
Martha
Friday, February 27, 2004 7:42 AM CST
HI! Not too much to report from our doctors visit yesterday. He got his second dose of Vincristine and we are now finished with steroids. The Vincristine has not kicked in yet to make him start hurting. I am figuring it will be later today or tomorrow that he starts hurting quite a bit again. One of the biggest side effects of Vincristine is bone and joint pain. He felt like going to soccer practice last night so he was very happy about that. His blood counts were very very high yesterday, but that is typical since he had been on steroids for the week. As long as he does not feel too bad tonight, we are planning to go to Chuck E Cheese with some friends for his brothers birthday. Please sign his guestbook (link at the bottom). He is really enjoying reading them. Thanks. Hope everyone has a great day.
Monday, February 23, 2004 8:06 PM CST
He had an ok night last night, but as soon as his meds wore off around 5:30 am he was up. Joey seemed to do a little better today. He was still hurting quite a bit, but all i had to give him during the day was Motrin. He seemed to be feeling worse again tonight so I gave him his tylenol 3 before bed. I am hoping that he sleeps ok tonight. I am running very low on his pain med and I will likely have to call and get a refil tomorrow. He mostly does ok without it during the day but nights are alot worse. I was actually able to get a reasonable amount of schoolwork out of him today. He is starting to read prettty well. He is doing well with his First Grade work. I need to go for now. Please sign his guestbook (click on the link at the bottom) and I can either read them to him or as well as he is reading he may read alot of them mostly by himself. I hope everyone has a great night! :-)
Sunday, February 22, 2004 10:01 AM CST
Joey is really having a hard time right now. He was up most of last night just "HURTING" despite the fact that I was alternating giving him tylenol with codeine and motrin. He also had cold med a couple of times in there. He is a little stopped up and complaining he has a sore throat. I figure he does since I woke up with a bad one as well and he has been sitting or laying on the couch with me most of the last 2 days. His stomach does ok as long as he has had his stomach med which is luckily an 8 hour medicine. He mostly lays on the couch watching videos or following me around the house whining if I am not actually sitting with him at the moment. His new FAVORITE movie these days is "Why, Oh Why Charlie Brown?". In this Charlie Brown movie one of the characters (Linus' friend Janice) comes down with Leukemia. I was told about this movie recently so I ordered it. It is actually pretty factual and I think he likes it because he can relate to what they are talking about. I think my other kids are starting to get sick of it though they will sit and watch it with him. To give you an example of what steroids do to him ( and any other small kid that takes them)....This morning he had a waffle in the toaster oven and I asked Jason to get it out for him. Jason asked him if he wanted butter on it and Joey said "no, I just want it plain with no butter or syrup"....Jason puts the waffle on the plate and goes over to give it to Joey...Joey bursts into tears because there was NO BUTTER on his waffle!! I better go finish getting lunch on. I am actually surprised he has not already been in here looking for me. More later...
Friday, February 20, 2004 10:54 PM CST
Joey is not feeling too good right now. He received alot of chemo at the doctor yesterday and is also on steroids. He is really hurting alot in his back and legs. Earlier this evening he was walking hunched over because he said it really "hurt to stand up straight." I talked to the nurse practioner late this afternoon and she wants me to alternate tylenol and motrin during the day and give him tylenol with codeine at night. If that is not sufficient I have to call them back and I will probably need to take him in to be checked out. His stomach also started bothering him this evening but that is also to be expected. His stomach had been doing good for a long time and I was out of his stomach medicine so I had to call the dr on call tonight to have her call him in some. I am glad that he was able to go to soccer practice last night cause unless something amazing happens he is not going to feel like going for the next couple of weeks. Hope everyone enjoys the new pictures we added to the page tonight. They were all taken in the last couple of weeks.
Thursday, February 19, 2004 4:39 PM CST
Joey had his long clinic appointment today. He had a spinal tap and he received a little golf game with an automatic ball return as his "prize". Unfortunately there was something wrong with the numbing cream and the spinal tap turned out to be alot bigger ordeal than it normally does. He also got a chemo med called Vincristine in his port. He will get that again next Thursday. He also got his med thru an IV in his port to help his immune system. We were there about 5 1/2 hours for all this. His counts were good today. His ANC (white count and segs /neuts percentages multiplied together) is still higher than they really like. They like to keep it around 1500 and his was almost double that. They adjusted one of his chemo meds 4 weeks ago and since he has been hurting quite a bit from that , next week they are going to bring that med amount back down and up his other one that he takes every night. Besides the fact that upping the one med did not seem to bring his counts to where they were wanting them anyway. Since he got the spinal today he is not scheduled to take his weekly methotrexate til next week (he gets that same med put into his spinal fluid during his spinal tap) He starts taking steroids tonight . So between the steroids, vincristine and methotrexate he got in his spinal tap he probably will hurt quite a bit this week. The steroids also make him have VERY EXTREME EMOTIONS. The only positive thing I can say about steroids is they really make him have a REAL GOOD appetite. He has his first soccer practice of the season this afternoon at 5:30. He is looking forward to that.
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