Beautiful Day at the Zoo!

We were able to enjoy a beautiful day at the zoo last Saturday.  All the animals were out entertaining the crowds, we all had a great time getting out and doing something fun as a family.  However it was a much different visit from the last time when we were there a couple months ago.  Max is doing so well that he is able to keep up with the girls and now we have 3 little independent kiddos running in all different directions. We broke out the leashes to help us manage the chaos.

Max and Molly loved watching the penguins!

2nd Insurance Update

We haven't made a lot of progress since last month.  Our Oncologist has enlisted the help of colleagues around the nation to agree that the medication Max is taking is medically necessary and we are hoping it will help build our case.  The hospital has also helped us by gaining the help of an attorney to represent us and the doctors with all the communication between Regence. This will be a huge relief for me so that I can focus on being a mom and caregiver and not on the legal research and negotiations that go back and forth.

We also made the decision to change our insurance plan, we have found a better plan through Josh's work that actually advertises that they cover clinical trials.  We only had 4 days to research and make the decision.  We are hoping that a change at this point in the year will pay off, it should give us slightly lower monthly rates, co-pays, a lower stop-loss for the whole family, and better benefits. We have already maxed out our benefits from January, but this was the only time we could change with Josh's open enrollment.  We are in process of starting over on all the pre-authorizations needed for all of Max's expensive drugs and procedures. We are hoping that all this work will pay off and this new plan might make life a little easier for us.  We might even qualify for a grant through the insurance company that helps hard working patients who fall through the cracks with private health care insurance. We appreciate your continued prayers as we step out in faith with this new plan. 

Chemo - Round 4

I am so sorry that it has taken me so long to add another post, I know everyone has been waiting for an update, best to assume that no news is good news=).  Max's scan came back good, there were some suspicious spots in the lower lobe of his lung above the original tumor, but not enough to determine that the cancer has spread.  The oncologist discussed the findings with the radiologists and determined that we would just watch it to see if it changed at his next scan.  It could also be shadows where Max may not have taken a deep enough breath or scarring from the surgery, etc.  Needless to say we are not concerned.  We also decided that now was the time to cut his steroid dose in half, this is a critical turning point in his treatment, we are watching very closely to make sure we doesn't exhibit any additional symptoms or relapses.  The clinical trial requires that the symptoms have to progress over 3 days before we can disucss backing out of the study or getting permission to change the doses.

He did really well in this round of chemo, still a long day, but we got a really helpful and attentive nurse, I was a little better prepared this time and it paid off, Max received a higher dose of chemo on this round and got more nausea medicine, which made him a little more sleepy and we got him to take a nice nap. 

We have so appreciated all the volunteers that help make going to the hospital a fun thing. One of the highlights of Max's day was his visit with the "Singin Chaplain", he shares his ministry with sick kids at Children's hospitals on Mondays, we have enjoyed his songs and visits to our hospital room over the months.  Max had a great time tapping his foot and dancing along with his music today, Kelly also gave us a second cd to add to our collection.  You can view more about his ministry at his website and read his touching story at: http://www.chaplainkelly.com/ and hear his story and interviews with komo 4 and king 5.

Dancing and Singing with Chaplain Kelly

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.





What a week....

So we are excited to say Max is doing really well with all his treatments and it seems medically things have settled down and got into more of a routine, now if we could only say that for the rest of life, but I guess chaos is a given when you are parenting twin 1 year olds and a three year old.  =)

Last week Max and Molly came down with the stomach flu which was loads of fun, then Josh and I were excited to celebrate our 7 year wedding anniversary this last weekend when we instead got to fight the stomach flu side by side. How romantic right?


Before


We had a few other exciting scares this week leading up to last night when Max had a nasty spill and split his lip in just the right place.  It was gaping open and the side of his lip was hanging off his face, after I got the blood cleaned up I noticed that his teeth pierced his lip and it went through and through. Josh had an evening work event and I wasn't able to reach him so I called in the calvary to help with the girls and rushed Max down to the ER at Children's.  Luckily with him being an oncology patient we get "special" treatment and they had a room waiting for us when we got there and a staff of ER doctors and nurses ready to get started.   It is really a good thing I have a diagnosis for Max's clumsiness because I still cringe as new doctors do their examinations and bruise counts and of course last night was no exception - poor boy was riddled with bruises all over his body and I was sure they were going to call the police on me.   We opted to try to treat him with some medication to relax him rather than the full anesthesia since they would have had to check us in to the hospital overnight.   He like always was the model patient, you wouldn't have even known he was in pain.  He flirted with all the nurses and tried to flash his charming smile at everyone who walked by his room, of course his smile was slightly deformed because of the hole in his lip, but that didn't stop him from trying.  They were able to get him fixed up with 4 intricate clear dissolvable stitches on the outside of his lip (the inside should heal on its own), he was wide awake and watched the whole thing, he held still and did what he was asked except he kept trying to give the dr kisses while she was sewing so we had to take a few kiss breaks.



After

 He came away with stickers, bubbles, new stuffed animal friends and a whole ER full of staff ready to take Max home with them.  A blessing was the timing of this, his platelet counts are at the highest they will be in his treatment cycle so no need for transfusions or special treatment for that and he has been taking a prophlayctic or preventive antibiotic so we didn't have to have him admitted for IV antibiotics. No new prescriptions needed just his normal oxycodone and lots of ice cream (to help with the swelling of course). We didn't have to spend the night and were able to get home at a somewhat decent hour. We are hoping that this spill doesn't change his charming smile, but so far you can hardly even notice the stitches when you look at him.

Tears of Joy…

 

Our family has been so touched lately by the support and gifts that we have received.  From the beginning we had so much to worry about when Max was given his diagnosis and we knew that we didn’t have time or energy to worry about things that we couldn’t control ourselves and had to cling tightly to God’s promise that he would provide for us.

We are here to say that we have had so many opportunities to share tears of joy lately.  We have been so well taken care of by friends and family who have cleaned our house, provided amazing child care, showered us with encouragement, calls, cards, emails, shared their love and attention with our kids when we weren’t able to, surprised us with groceries, date nights, tanks full of gas, care packages, toys for our kids, and of course all the prayers.

We have been blown away by the support of all those who have come in contact with us and we are soo grateful for each and everyone of you!

 

Health Care Providers Council of Pierce County .

Josh here for once, Kari usually updates the blog for us, but I personally wanted to give a BIG thank you to the Health Care Providers Council of Pierce County. We were completely shocked, overwhelmed and amazingly blessed by the gracious gift that this group was able give us yesterday at the monthly meeting.  Thank you so much for your contribution and willingness to help our family. This was a wonderful thing you all did for us and we appreciate it so much! - Josh

Eating...


 

Max with a feeding tube in the NICU after birth

Max is such a trooper but it is a bummer to see Max not enjoying his food like he used to. He always had such a great appetite and would always clear his plate (and both sisters' plates if we would let him).   

He lost 5 pounds between the surgery and chemo which is quite a bit for a little guy.  Molly has now passed him up in size. We were told that if he loses another pound he gets a feeding tube placed, luckily he was able to maintain his weight another week, we were fully expecting  the loss this week given his lack of appetite.   This might look disappointing from the outside and will be a constant reminder of his sickness, but it may make life a little easier for everyone for the next little bit.  We will be able to give him all his food, meds, and fluids through the tube and hopefully resolve some of the battles we have been facing.

So for now we will try to figure out how to cater to Max's new chemo palate to get more calories in him.  The foods he used to like no longer taste good to him. This week he has really enjoyed eating salsa and hot sauce!  Since he isn't able to communicate with us meal times are pretty difficult.  The doctors also think he is battling reflux along with the nausea and so we have been trying to play with different meds and dosages to try to treat that symptom.  We got some helpful tips from doctors last week on how to increase his caloric intake by adding fat (whip cream, sour cream, butter, etc.) to all his foods.  Sounds like an awesome diet huh?!



Max with a tube in after surgery






Chemo - Round 2



Max playing some Xbox 360 while
waiting to get hooked up



We made it through round 2! Max did a great job today, we were able to try to shave off a day of treatment by combining some of the infusions instead of running them back to back.  It made for one long day, but at least its over and he doesn't have to endure a second day.  They continued to monitor all his vital signs every 15 minutes all day.  He had several episodes where he developed high blood pressure and a fever but we were able to make it through without having to be hospitalized but we will continue to keep a close eye on him at home. We were able to get a crib this time so Max could take a brief nap in between  interruptions.     

We also had another evaluation with Dr. Park, the neuroblastoma specialist and head oncologist today.  She was so pleased with his progress.  When we were first seen last month he was scored at a 7 on a scale of 1-10 for the severity of his OMA symptoms, in his reevaluation today he was scored at a 4. This is great news!  We are going to try to back off on some of his steroids to see if the progress continues and some of his side effects subside. We are also going to try to limit the amount of dr appts, and lab visits the next couple weeks so we can try to get him back on a more normal sleeping schedule. Although they still want him seen by OT/PT and Speech Therapy as much as possible to continue the progress while we play with the dosages on his steroids. We are still battling the insurance company on several different issues including his chemo treatment and the coverage of his OT/PT and Speech Therapy, hopefully now that the holidays are behind us we can make more progress.

Daddy rewarded Max with some cheddar  "chemo" corn

Beads of Courage

Many people have asked what Max and I do at the hospital when we go everyday and we thought it would be a good idea to start keeping track of all of our visits so we decided to get involved in a program that is called beads of courage. It is a neat program that gives kids a special glass bead for each nasty procedure, poke, dr appt that they have to endure. We hit our month anniversary of Max’s diagnosis and in 30 business days Max had 50 outpatient dr appointments at Children’s Hospital. In recording this for beads of courage he has had 8 procedures requiring anesthesia (MRI, CT Scans, MIBG, X-Rays, etc), 1 Bone Marrow biopsy, 1 Bone Marrow Aspirate, 1 day of Chemo, 8 clinic visits with our oncologist, 1 ER visit, 4 days of PCA infusions, 8 days of spending the night in the hospital, 1 port placement, 1 lumbar puncture, 1 surgery, 2 days of IVIG transfusion, 3 tube placements (NG, Breathing/Chest tube, and a foley), 15 appointments/evaluations with other team members (OT/PT/Speech/Opthamology/Audiology ,etc), and 18 successful pokes, IV’s, port accesses, blood draws, etc (that’s not counting all the misses). Max gets a special color bead for each thing he has done. We have counted that he is eligible for 61 different kinds of beads! What an accomplishment for a little guy in one month! Daddy says that boys don’t wear necklaces so Max can make a pretty necklace for his mommy. =)
Here is a news report from CBS that was aired this month.

Opsiclonus Update

I love posting good news to share with everyone who has been so faithful to pray for Max. We had a random eye movement test at Children's in conjunction with UW opthamologists on the 16th.  The opthamologist who had examined Max right after his surgery was so excited to see so much improvement in Max's eyes.  They had Max sit on my lap in a black room and had a dr hold goggles with built in video cameras over Max's eyes to video tape each eye ball.  When we discussed this test to begin with I was told Max just needed to sit still for one hour, but when we got there we were told that his eyeballs and head had to hold still for one hour.  My question is how does a mom control her son's eyeballs?  Luckily, Max's eyes have improved so much we didn't have to endure that torture for a whole hour.  The dr was amazed and  shocked to see the improvement.  The dr's don't know if it is the tumor being removed or all the treatment he is undergoing.   We decided that science is great but it all boils down to God performing a miracle in our little boy.

Genetics Update

More good news! Molly's ultrasound came back "unremarkable"  Yeah! This means no tumors.  I also talked with our Genetic Counselor today and the blood and urine tests came back negative for elevated HVA/VMA counts. Some kids have elevated numbers to indicate a tumor, and some don't. It's not completely accurate but can sometimes pickup issues. Max never had elevated numbers even when he had the tumor so we knew there would be a good chance the test wouldn't be completely helpful.  We will proceed to try to pickup the ALK gene in Max, if this can be found then we will test Madison and Molly using this method of screening.

I take for granted what a good patient Max can be during all these procedures. Poor Molly thought that the ultrasound tech was going to kill  her and screamed bloody murder for a whole hour, she laid on top of me and I tried to restrain her with my limbs to hold her still.  I guess this test would seem scary to a little kid who doesn't understand what is going on.

Genetics

We met with the Oncology Geneticist and and Genetic Counselors yesterday.  They have done a bunch of research on Max's condition and they were only able to trace one set of identical twins that presented with matching neuroblastomas. This doesn't really affect us since Max and Molly are fraternal, so Molly's risk will be the same as Madison.  They said both Madison and Molly are 6 times more likely to have a neuroblastoma, however they think Max's cancer may be a spontaneous case since we can't trace any other family members that have had a form of childhood cancer. We did make the decision to move forward and have at least Molly tested for now. She had a blood test and exam and we have an abdominal ultrasound scheduled forThursday to check out her adrenal glands.  Our new oncologist says that there is a new type of screening that tries to find an ALK gene that we will have Max tested for and then can run matching tests with Madison and Molly.