Making it through...

This past month has literally been a blur to me...we are all pretty emotionally and physically exhausted from all the Atlanta trips and overall chaos from juggling schedules, kids, and household responsibilities. Not to mention Sam trying to function for work and coming home everyday to Connor just a wreck from his meds and the chemo. Ryan and Stacy are managing well, I will say that the bus has been a blessing this year as far as getting them to and from school. I know they need a break too, makes me look forward to Thanksgiving! A few days break will make a huge difference for us all.

My foot is a little better (I sprained it really bad two weeks ago) it is TRUE what they say about sprains hurting more than breaks! Horrible pain and even now it is still bruised and swollen and cannot bend to the right at all. I never went for the bone scan since we are too busy, but I'm wondering if there might be a small break in there somewhere after all...might have to look into the physical therapy the doctor recommended but I hope to avoid it and just keep exercising it myself.

Connor has been back to school two times now. I hope he can resume a more normal scheule next week (praying) he misses his teachers and especially his friend Donte. The break has not been good for him socially, he is not wanting to go to school now at all but once he gets there he is fine. I guess a little clinginess is normal after all he's been through. The class has been sweet to remember him and they all signed a card for him and sent home a fire mans hat the day he missed seeing the firetruck.

Looks like we are in a holding pattern for now with his meds-letting him get through the after effects from today's dose of Rituxan and then watching and waiting before we go to the next step if his OMS symptoms get really bad. We are going to use a medicine called 6-MP instead of the steroids if at all possible, but the worry is it takes time for the new med to start working-so more steroids might be needed regardless. It is an oral chemotherapy that he will have to take everyday but seems to be the lesser of two evils compared to the steroid induced psychosis and pain he endures with the Decadron.

I am very sad to say that it seems like Connor still has not bounced back to his usual self after the horror of the Decadron two weeks ago. It might just be due to the chemotherapy but it is scary nonetheless to see him so changed. Very irritable and grumpy-probably from just not feeling good in general.

Speech Therapy is now cancelled for the next two weeks :-( after our dramatic exit from their last week. Connor was in severe pain and saying his tummy hurt...they have a VERY strict cancellation policy due to so many parents being no-shows, etc. That I was afraid to call and cancel and risk losing his spot. (I am not happy with how this makes it so hard on Connor when he has legitimate reasons to not be there sometimes) so he is screaming through most of the session and I am ready to fall apart from seeing him suffering, yet still struggling to do his speech work....as we are leaving he vomits continuously all over the waiting room. I just had enough- I asked his therapist to please just take him off the schedule for the next two weeks until he is over most of the side effects from the chemo.

The numbers came out today at our clinic (Aflac Cancer Center@CHOA) and 361 new cancer cases were diagnosed this year alone at just this clinic! So sad how busy the clinic stays...but I am soo grateful this is where Connor gets taken care of-wonderful doesn't even begin to describe the care he receives here.

Thanks for checking on my little guy <3
debbie

Lots going on...

Just wanted to let everyone know why we haven't been home to answer the phone or anything else lately.

Connor had to start back on chemotherapy to try and get his OMS under control. Hoping the medicine has the least side effects but helps to control his symptoms. His poor eyes are just dark circles underneath and the doctor thinks it's from all the eye movement making it hard for him to see and then he just strains himself and gets worn down. He has an appt with an eye specialist soon, just to rule out cataracts or other problems due to the steroids.

I cut his speech therapy shedule back from Monday and Friday after school to just Tuesday afternoon once a week. Arranged to get him in there and to a secluded area away from all the kids so he doesn't catch their germs (hopefully)

So I guess we are on semi-lockdown now for the winter. Disinfecting wipes, face masks for Connor certain places, and lots of hand washing....pretty much what we do already just more intense and much more secluded for at least the next 6 months-a year.

Already feeling the effects of it, having to tell the kids we can't do things they want to do. Laurie wanted me to throw a Halloween party at my house, lol, not going to do that!

Connor is having a very rough time with the steroids still-much worse than its ever been. Pain and irritability don't really even begin to describe the hell he is enduring. As if dealing with the physical symptoms from the OMS weren't hard enough on him! The plan to get him completely weaned has not come together yet, hopefully tomorrow I will hear something back from the doctor.

He gets his 2nd dose of the Rituxan on Thursday and two more doses over the next two weeks. Hes not really going to school right now-its just too much for him. Maybe soon he can start back to half days...

Thanks for all the prayers and sorry for the long absence.
Love,
Debbie

Spreading the Word!

Been an emotional month, but a very successful one, spreading the word about childhood cancer! The entire month of September is dedicated to awareness. I've watched my Facebook turn GOLD and seen so many moving videos of warriors that have lost their battle, those still fighting, and the survivors. I cried as "I watched The 46 Mommas Shave for the Brave" in Los Angeles and make their appearance on Stand Up To Cancer. Hopefully one day soon the gold for childhood cancer will be as well known as the pink for breast cancer.

We also had some recognition for Connor's condition OMS on the show "Mystery Diagnosis" on Discovery Health channel. The Jennings Family from Texas and their sweet little girl Alexa taped the episode last May. This was a huge deal for my OMS online group-this is the first national attention the disease has received. It was very emotional for those parents that have seen the episode, I am anxiously awaiting seeing the episode as well, but we no longer have Discovery Health, luckily one of our OMS parents is making copies for all of us.

We have been seeing signs of the steroid weaning process not going well and have begun researching our options. Long discussion with the doctor a couple days ago and no decisions yet...but it is sure to be a difficult process, much more difficult than we imagined. In the meantime Connor is the trouper he always is-and we are taking it day by day. The hardest part is seeing him in pain and getting him off the steroids is the best relief for that issue-but we do not want to exchange one problem for another on a different drug, that might be even more intense. We know that immunosuppression is the best hope for him as far as preserving his brain and sparing him any further damage from the OMS. And his little body can only stay on the steroids so long before we will HAVE to move to another drug-most likely chemotherapy. The doctor wants us to first use Rituxan again, which is a four week infusion and then move on to 6MP, an oral chemotherapy. Me and Sam have discussed this and will only move to this treatment plan when it is absolutely necessary. But it is becoming painfully obvious that he WILL most likely need to move to this eventually. He is just not able to be free of the drugs yet without relapsing with his OMS.

We had hopes of going to the circus this weekend...but decided not to risk it. We also wanted to try and get away for a few days-but just not sure if the kids can afford to miss even a day of school right now. Such is the life of high schoolers, lol. The dedicated ones I suppose anyway....

Please keep Connor in your prayers that his symptoms ease and specifically for pain control in the coming week as we give him an added steroid pulse dose to try and get things back under control. Also, prayers for the others in the battle! Our cancer friends especially right now needs prayers- little Chloe Shiver is back in NY having more stem cells harvested and Patrick Chance's family received devastating and heartbreaking news of widespread disease throughout his body. Truly sad to hear...but his family continues to PRESS ON and pray for guidance from the doctors, and a miracle for their son.

It has been hard to see so much sadness around us but it also reminds us how lucky we are to have Connor with us and doing as well as he is. He is our miracle! Never far from my mind is another lost child, Reid Nelson, an OMS angel now. Never forgotten! We are so happy to share that his parents are expecting a new little baby.

Love to all,
Debbie

Awareness

I cant believe it is almost September! The summer is almost over (well, officially it already is since school has been back in session for 3 weeks) Still SO hot here-wondering if fall will ever truly make it sometime before Christmas. I hope so because it seems most of our plans have been put on hold "until its cooler" lol it is just too hot to really do anything outdoors and it has been like this for a while now. So many things we want to do-go back to the beach, go to Callaway Gardens, go to the zoo...just waiting for the temps to drop at least 10 degrees first.

So its been a long time since I posted an update...Lots of reasons why-mainly being I have been very focused on the kids and enjoying them. Tired of all the electronic distractions-tonight the Emmy's came on TV and it surprised me to notice I didn't recognize MOST of the shows they were raving about! Not much on I am interested in watching.

I wanted to make sure I let everybody know that September is Childhood Cancer Awareness month...the gold ribbon in this picture represents childhood cancer and the purple handprint represents neuroblastoma. Just one month out of the year to try and bring attention to all the kids affected by cancer-way too many.

Connor is doing good. Back in school, adjusted well to his classroom-thankfully its the same one as last year so that helps a lot. Still weaning off of the steroids-this will take some time we are coming to find out...going very slowly as to not risk a relapse with his OMS. He is a trouper though and keeps surprising us with his strength and courage.

The rest of the kids (and Sam & I) are getting used to the new school hours. VERY different this year! Ryan and Stacy like the new morning times they have but they are getting home really late now in the afternoon. The little ones have a very early start but get out a little sooner now. (this sure helps with after school therapy appointment)

3 years and counting...

We have past the 3 year mark now for Connor's Getting sick with OMS...so much changed in such a short time. Thank you to everyone that has followed his progress and prayed for his cure from this horrible illness. He is doing well and getting better everyday!

We have been enjoying our summer, mostly just spending time together at home before the craziness that comes with a new school year. Especially this year-we are going to have new school hours, a little earlier for the little ones and a little later for the big ones. Should be interesting getting into a new routine! Ryan and Stacy will be sophomores in high school and Samantha will be starting 2nd grade. Connor will stay in the same STEPS class as last year, hopefully getting ready for Kindergarten next year. Not sure if he will be in a class next year of only special needs kiddos or if he will be mainstreamed with the other kids. No perfect answers, but I have seen how much he has overcome and I am learning not to underestimate his ability to amaze us with what he can do.

Trying to get a jumpstart on those school supplies while there is still glue and hand sanitizer on the shelves, lol. Samantha picked out a new backpack a few days ago and was worried she might get laughed at if she got a character bag-broke my heart a 7 year old might worry about that :-( I told her I thought the littlest pet shop one she picked out was perfect for a 2nd grader!

We are down to 6 mg. on the Decadron that Connor takes and only TWO days per month instead of three. So far he is doing well with the new dose, we are keeping an extra close eye on him for any possible signs of relapse.

We have still been going to speech therapy twice a week over the summer, it has been so frustrating for all of us...mostly Connor. He is working on his letter "K" now which he pronounces as the letter "T" in order to get the kaaa sound out, the speech therapist needs to use a Popsicle stick to hold down his tongue and then he can use the back of his throat to try and make the correct sound. A lot harder than it sounds. He gets so upset and says he doesn't know how and he can't. I need to practice with him at home on this area, because it is not coming easy for him.

Atlanta next week, going to take Samantha along to play with Connor during the long infusion. Ryan and Stacy are up in Washington state for the month so we are missing them so much. Glad we got to go to the beach with them before they left-we had a good time. I will try and post pics soon, we have some funny ones of the kids together.

Love,
Debbie

Papers, Papers, and even MORE papers...

Our house is a bit turned upside down at the moment, it is time for the review on what services Connor qualifies to receive through the state since our insurance will not pay for certain things he NEEDS (like speech therapy) Battling the insurance is a gut-wrenching and time consuming task we parents of ill children are all to familiar with-being put on hold a lot, sent to mailboxes that are full and no message can be left on them, oh the fun! Lots of ??? from them that involve the word "WHY"? Why does he need this $5000.00 infusion every 3 weeks? Why does he need these medications every month Why does he require all this speech therapy? Well, it happens to be because although he IS speaking now the words are unintelligible to 99.9% of people he talks to. And on and on...right now is the "gathering process" I have to get ALL of his EOB's together (explanation of benefits) from the past year, which is around 76 or so for all the different infusions and procedures...then EVERY therapy note taken this past year-which adds up quickly since he goes two times a week. Also his IEP from school, his latest evaluation testings from the speech therapist, etc... It ends up being hundreds and hundreds of papers to send off to fall into the hands of hopefully a compassionate soul out there in the world that gets to decide WHO gets the help and WHO doesn't...It hasn't really helped us that much with the medical bills for Connor-but it has been a godsend for the therapy bills! So please keep praying on this with us!!!

Rough week this week, Connor is bloated and in pain, but sleeping soundly at the moment. He even still felt up to riding his bike this evening which surprised us all! Still weaning and right now it seems the steroids are winning the battle-but we will keep trying even if is not quite at the pace we had hoped. I do have to admit I LONG for the day I will be able to take him outside our house and not worry about EVERY single germ that might come in contact with him...Raising an immune-suppressed is just so hard with so many UNKNOWNS lurking all around you. Does that person have allergies or or a contagiouis cold? And on and on, etc...you get the idea.

Planning on going to the Georgia Aquarium at the end of the week!!! So excited-havent been there since I was pregnant with Connor and Samantha was only three and the twins were only 11. I hope C does okay with his fears he has about places like this (pray) :-)

We are at the THREE year point in our journey through childhood cancer and OMS. I have learned a lot along the way-learned of so many special kids that have gone on to heaven too soon...I have learned to fight for my son and the school system to get him the help he needs. I guess you could say I have leaned a lot of good and a lot of bad...but what sticks out the most is just the LOVE. From strangers, from friends, from doctors and nurses, from little cousins who don't understand but still are quick to give hugs to Connor on a bad day...Love from a big brother ang big sisters to their little brother, whose whole world is about them! Thanks to them he has as close to "normal" a life as possible-who better than siblings to still treat you normal-they chase you and tickle you , teach you how to do things and love you no matter what.

Three years in, and still fighting everyday to add to that number!

Summer is here!

Stacy & Samantha after the dance show

Samantha & her friend Olivia with their pretty flowers

Connor on his favorite thing in the world-his new bike!

Samantha & Connor about to go for a ride

Connor proudly wearing his medal on the last day of school

Cousin Adam stole Connor's hat! Silly boy!

Last day of school pic of Connor's class


Been busy around here...Connor got a new bike with his birthday money from his grandpa and he is loving it as you can tell by the new pics. Almost every evening Sam has taken the kids out and it is so funny to watch them! He calls Connor "too fast" since he races along, lol. Samantha is improving, but seems to be taking after her older brother and sister with coordination...let's just say it isn't coming naturally-but she does have the desire to ride that they never had.

Samantha is having fun this week at vacation bible school. Especially since her best friend Kate is there with her :-) getting her out of bed hasn't been fun though! Speaking of which-Stacy &Ryan have been loving the sleeping in, I don't mind since the whole school year they were up at the crack of dawn in time to catch the bus, lol. Stacy starts her volunteer work next Monday-she will be at the assisted living apartments again. I think she missed her new friends there as much as they missed her. Haven't seen much studying for the driving permits yet, I told them I'm taking them at the end of the month and it is up to them to ready. Hard in the summer though when there are much more exciting things to be doing! Havent decided when they will take classes for the driving instruction-it is SO expensive, much less for two at the same time! Definitely want to do it AS they are learning. I admit I am twice as scared at the thought of both of them driving, guess it is hard for all parents-but especially when someone you know loses their child as a co-worker of Sam's did this past week. Only 16 years old! Please keep our friend Linda in your prayers who has suffered this terrible loss.

Happy birthday to my nephew Kevin! Today he is 15 years old...we love you Kevin, you are such a smart and lovin son, brother, cousin, nephew, grandson, and friend to all of us who know you.

Connor had a hard time last month with the steroid weaning. Not unexpected, but still scary to see him relapsing with his OMS symptoms. Thankfully an extra dose of meeds got him through and back to himself. Just not sure how to continue the wean at this point without encountering any more damage than he already has. Good news from the speech therapist on his recent evaluation! He measured closely to his age for what he understands-and for expressive language although it was around 2 years behind, he is coming along. His last infusion went good, we go back on the 23rd I think. Please keep Connor in your prayers to be able to get off his steroids and for infections to keep away.

Love,
Debbie