3 Month Checkup

Peek-a-boo!

It's hard to believe that it has been 3 months since Max's diagnosis of neuroblastoma cancer and OMA. We met with the team last week to discuss Max's progress and everyone is amazed at how well he is doing with all of his treatment.  He is really excelling in the home therapy program, he is walking, talking and becoming more independent daily. He does so much better working with the therapists in his own environment as opposed to the clinical setting, however he continues to work with therapists at the hospital that deal with cancer kids.  His oncologist and team can't be more excited to see his progress in all areas, he will have another round of Chemo on Monday and then possibly just two more rounds after that.  The steroid regimen will continue another year and a half and they haven't quite decided how long he will have to get his infusions of IVIG, it could be 2 years or longer.  A lot of the decisions depend on the scan Max had done today,  he will continue to have a series of scans every 3 months to watch for the spread of the neuroblastoma. Today is the first one since his initial diagnosis.  We will meet with the oncologist on Monday prior to receiving the chemo to discuss the results and to possibly order more tests depending on the outcome. From the outside Max looks like a normally functioning kid, however, he is still dealing with ataxia (tremors, instability, and motor control issues), slurred speech, and sleep and behavior disturbances (which is most likely from his steroid regimen).  We are also keeping close tabs on his eating as he still hasn't gained any weight and making sure he continues to hit all of this developmental milestones. Overall we can't be more pleased with his recovery, we know God has been in control of it all and we can't thank you enough for all the prayers for Max. Keep it up!

Max waking up from anesthesia after his scan today

Snow Day!

We got about 3 inches of snow overnight and by 8am the kids had successfully torn up all the snow and were wet and ready for hot chocolate (ok maybe just the marshmallows). The had lots of fun...

snow angels

Snowplow anyone?

Lots of fun sledding!

and snowball fights...

ER Visit - Fever

 After a successful wedding the night before, Sunday was spent in the ER as Max woke up with a temperature of about 103. Fevers in oncology patients are a big deal and require immediate attention, we called the dr and they had a room waiting  for us when we got to the hospital. Max isn't allowed to have tylenol or motrin because it can mask symptoms that can help us determine there is an infection, so he was feeling pretty yucky!  While Max is speaking better he is still not old enough to communicate what doesn't feel well, so we spent the day running tests trying to figure out what was going on in his little body that would cause such a high fever.  Since we were around a crowd of people the night before it was difficult for us to narrow down any specific viruses or infections he may have been exposed to, his blood counts were off so we knew something was going on but we had to just keep guessing. While we were waiting he was able to get a bag of IV fluids to help keep him hydrated. Luckily we were able to rule out any serious bacterial infections and were told we need to watch and wait for more symptoms, we also were given permission to give 3 doses of tylenol through the night, but no more.  As we were about to be discharged the nurse and I noticed something wasn't right with Max and found that the IV that was in the port in his chest must have dislodged and became stuck in his chest and his chest cavity had filled up with the fluids he should have been receiving. It was a little scary at first as we weren't sure what had happened.  Luckily they hadn't hung any antibiotics yet and it was just saline.  The doctors determined that he was going to be okay and the body should easily reabsorb the extra fluids within a week, but it did leave him with very swollen pecs and lots of bruising. It would have been a much bigger issue had it have happened with some other type of fluid.   God was watching out for us today, and it was a blessing that this happened after the wedding so that we could all be a part of the ceremony and it was a nice wakeup call for us to continue to be cautious about our exposure to germs.

Wedding!

Josh and I were so excited to be a part of the wedding party and share in the excitement as my brother, Kraig, and new sister-in-law, Stephanie, were married on Saturday night.  They had a beautiful wedding that went off without a hitch! After lots of practice Madison did a wonderful job as their flower girl and felt like a true princess (she asked everyone to call her Sleeping Beauty instead of Madison for the day).  She let us know that in her next wedding she thinks she is ready to be the bride. =) We can't be more happy for Kraig and Stephanie as they start their new life together, Thanks for letting us share in your happiness!

Molly's Successful Surgery



Molly showing off her hospital bracelet after surgery

Molly did great today! We checked in early this morning and got her scrubs on and she got her second round of tubes placed.  We had a last minute issue with her adenoids, our surgeon couldn't convice the anesthesiologist to go forward with the adenoidectomy because of Molly's size and age since they would have had to place a breathing tube and other instruments in the back of her little mouth.  We have a checkup in a couple weeks to discuss rescheduling a surgery for her adenoids and tonsils once she turns two and is a little bigger.  At least we were able to get the tubes in  which should cut down on the ear infections for now. She was such a trooper, she left me in the waiting room and walked by herself into the operating room without crying or even looking back to say goodbye.  She did good with the aneshesia and was fussy after waking up in a strange place, but was able to calm down after a little while.  She is supposed to be tired and resting for the next 24 hours, but after a brief nap she is already back to her normal busy self.  =)  Thanks for all those prayers today!



Molly waiting for surgery with Papa in her scrubs



Tubes - Part II

   

Molly in her scrubs getting ready to go into her first surgery



Since this is supposed to be a blog about the whole family I thought I would post a quick update on Molly. It seems little Max has had the majority of the issues the last few months, but little Molly has been struggling with her own issues.  We had tubes put in her ears in August of 2010 and the tubes fell out and were removed after Christmas (kids usually grow out of them in 6-12 months) and she has had 3 ear infections since the beginning of 2011.  Molly and I met with the ENT yesterday and we have her scheduled to have another surgery next Tuesday (2/15) to have new tubes put in her ears and to have her adenoids removed.    Ear tubes are used to break the cycle of ear infections, allowing the ears to completely drain and ventilate. The drainage removes any fluid (and bacteria) in the middle ear, and the  ventilation allows the lining of the middle ear to return to normal. The adenoids are lumpy clusters of spongy tissue, they sit high on each side of the throat behind the nose and the roof of the mouth. It is an organ in your immune system used to catch bacteria that you swallow and breathe in, but it is thought that is mostly used to fight infections such as worms or parasites that aren't as common in today's society.   In Molly's case the adenoids have become more dysfunctional and infected and more of a liability than an asset.  

 

Poor Molly has been struggling with fevers and pain that keeps her up at night with all these ear infections. Who knows what kind of bacteria her ears and adenoids are growing, so hopefully by getting this surgery done we will minimize the amount of germs around the house and hopefully get her through the rest of flu season without any more infections.



Insurance Update

Many have been asking how we are coming along in our insurance battle, and unfortunately we don't have too much to report.  Max's expensive infusion drug is still being denied and we have been through several rounds of appeals.  The issue isn't that we are involved in a clinical trial but that Max's condition is so rare and there is no medical evidence to show which drugs really work, the best cases show that this drug has the best outcomes, but there is not enough cases out there to actually prove it. .  The drug Regence won't cover is a very common drug that is covered for tons of other autoimmune conditions, but it seems that any drugs that we try to treat Max with will all be experimental because there isn't any protocols out there to follow. Last week the neuroblastoma expert at Children's had a peer to peer review with the insurance company to which no progress was made. We should be receiving a hearing date soon, where Josh and I and our doctors will be able to argue our case, hopefully it will be close to home so that we all don't have to travel. Both Josh and I are in the process of preparing a written statement and a statement that can be delivered at our hearing.  Our doctors are trying to compile more information and medical evidence on Max's condition to provide to Regence. The problem is there isn't any! A response I received from a rep from Regence was that " we have never seen a diagnosis like this in all of our years and we will probably never see another diagnosis in our careers, so chances are we aren't going to change any policies."   I think we will just have to pray otherwise =).

We are also trying to work around our insurance issues with Max's outpatient therapy.  We maxed out all of our outpatient therapy benefits by January 15th of this year =).  We have been working hard the last few weeks to get into a government subsidized program called Birth to Three, it's through our local school district. We have been approved and evaluated in all of the disciplines. This week we will start Max's Physical Therapy in this home based therapy program.  Next week we will start receiving Speech Therapy and Occupational Therapy.  They will provide one day of therapy each week for all three disciplines to supplement his other therapy. We will still be followed weekly by the Speech and Physical Therapists at Children's as they are specifically trained in pediatric oncology therapy and will work with our team of doctors. It feels good to start getting into a routine it has been tough juggling all of this and trying to figure out what will work best for Max.

Chemo - Round 3

Grandma and Max both had infusions the same day,
here we are comparing hospital wrist bands.

Hopefully yesterday marks Max's half way point in his 6 rounds of chemo. He did an amazing job, it was so nice to have friends and family visit yesterday to help entertain Max. I tried to schedule a bunch of appointments during his infusion to try to cut down on the amount of time we have to be at the hospital the rest of the week. We got a nice private room with a bed and had dr's, dieticians, child life specialists, therapists, and nurses, visiting all day.  We were able to wear him out and got him to take a nice nap in the late afternoon, which helped immensely and made Max and Mom feel better also =).  They were able to run all the drugs at the same time yesterday which allowed us to get home at a decent hour.