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. 

Stumblin...

We realize that many of our friends and family didn't get to see Max's symptoms before we got the diagnosis since we were able to catch it so fast.  We really wish we would have gotten some good video footage to show some of his progress, but Josh and I both could not stop laughing when this SNL digital short was shared with us, as it looked just like how Max was walking before we took him to the hospital.
 
http://www.youtube.com/watch?v=-NjX0M9nuhw

The doctors say that his cerebellum is what is being attacked and he acted like he had just polished off 12 margaritas,  things progressed quickly to the point where he was irritable all the time, couldn't stand or sit up on his own, had dancing eyes, tremors, and slurred speech.  We met with our new oncologist that will be following us today and she was so pleased with the progress since his tumor was removed and he started chemo and therapy.  He is walking around the house, trying to climb stairs and he even walked through the hospital today without holding on to someone's hand! We are so excited with his progress and we know that it is because of all the prayers! Thanks!

Mommy's Little Helpers

Tis the Season for.......

 Purell and

Disinfectant Wipes!

Please don't be offended if you don't see our family around as much as usual these days.  Max's doctors have given us the talk about being extra careful around big groups of people during this season.  However, we want to try to allow our kids to lead normal lives, so we would love to hear from you if your little ones have come down with chicken pox or another common childhood illness so we can take proper precautions. There are things that our doctors can do to protect Max if we know.  Now that Max's treatment has begun our goal is to suppress his immune system to the point that it resets itself, so that it stops attacking his brain. This means that he will not have the same immunity that we have to fight off infections, and if he does catch something his symptoms may return and we may have to start the treatment over again.

Happy Thoughts for Keira

We have found blogs of other families who are in the same situation we are, some not so positive or encouraging, but here is a link to a blog of a family who has a daughter the same age as Max who has been diagnosed with a Neuroblastoma with OMA, she is also involved in the same clinical trial. They are about a month ahead of us in treatment and have made a lot of positive progress, they have done a much more thorough job of chronicling the journey through diagnosis, surgery, recovery, and treatment for those of you that would like to read more:  http://blog.crystalandnaveen.com/

God must have a sense of humor....

Somedays Josh and I wonder what God has for us next.  We realize we are being refined by fire, but we have come to the realization that we need to have a sense of humor in order to cope with days that have seemed unbearable and we realize that God must have a sense of humor too.  This was especially true yesterday as I found myself breaking out into laughter in a moment that probably seemed inappropriate.

Max's oncologists set up an appointment for us to meet with one of the more experienced and "older" pediatric neurologists at Children's Hospital, he came in and greeted us and began the conversation unlike any of the doctors we have seen to date.  He said "Have you ever used google?" and I found myself  speechless not knowing how to to respond at that moment, he went on to say that a few minutes before meeting with us he tried using google to find out more about Max's condition because not only had he never had experience with a patient like Max he had never even heard of Max's neurological condition and was interested  to learn more.  At that moment all I could do was laugh, I realize that it was probably rude and slightly innappropriate, but I didn't know how else to respond other than just letting it all out.  I also realize later that I probably should have just got up and left the examination and ask that he stop wasting our time, but in my head I wanted to hear him out because I was just sure God, Ashton Kutcher or a camera man was going to open that exam room door and say "Ha  Ha Just kidding, you've been punk'd".  As I was waiting for that moment to come, the doctor kept asking me questions that are clearly indicated in Max's chart and I asked him politely if he had a chance to read Max's chart and he said that he hadn't had time, prior to meeting us because he was online trying to look up his condition, he also asked me what type of neurological exam he should perform on Max.  I reminded him that that the oncology department wanted to make sure a neurologist followed Max's neurological condition.

I was polite and let him conduct yet another neurological examination to help him professionaly, because obviously he wasn't going to be of any help to our situation.  As he conducted his exam that of course was being conducted during Max's nap time, a day after he had completed his first round of chemo, and two weeks after undergoing a major surgery, he asked Max to walk on a straight line to this strange man and of course Max dropped to the floor and cried.  The doctor tried again and Max was done, instead of showing some compassion for what Max has been through or realizing that he might just be slightly traumatized by strangers in his face poking and prodding him and telling him what to do, he let me know that I might just have a discipline problem on my hand.  At that moment I was glad that Josh wasn't with me because I am not sure I would have been able to hold him back, and again I just had to laugh to myself and scan the room for hidden cameras.  I instantly began picking up my stuff and getting Max ready to leave and his last comment to me was that he highly recommended that I give him daily vitamins to keep his bones healthy.   I wish that I could say that I was exaggerating and I really wish that I had recorded this appointment to share with you so that you could have the same enjoyment as I did, but needless to say we will be doing more research to find a more experienced pediatric neurologist to follow Max. I will also be looking into attaching a large note on Max's chart that says "if you have not read this chart or done at least as much research on this patient's condition as his parents than please don't waste our time".  Okay enough ranting and raving for today, we hope that you all find moments to laugh and realize that we have a BIG God that is watching out for all of us and that he has a reason, and a purpose and a wonderful plan for all of our lives.

Future Doctors?

The hospital's child life specialists are keeping all my kids busy with medical equipment to practice with.  Madison is giving her "patient" meds through his port.

Chemo - Day 2

We all survived the first round of chemo! Max did so good the whole day, when we checked in they estimated an 11 hour infusion, but a big thank you to Papa who was able to recalculate our infusion times and speed things up a little bit. We got to be in a new room today and it had a tv and dvd player which made the day go a little faster. He had no reactions or adverse side effects and did so good sitting still all day, even without a nap. He had fun using his new chemo tools to fix up his hospital bed, I think we have a future engineer on our hands. Hopefully the next 24 hours will go just as well.

Chemo - Day 1

We could tell that we were covered in prayer today, Max did an amazing job getting through a long day. We left for the hospital at 7am this morning and didn't get home until 7:30pm, Max sat still on our laps during the whole infusion and even had enough energy to flirt with his nurses and keep us entertained with smiles and kisses.

He even got a personal visit with Seahawks football player Craig Terrill and a Seagal and a personally autographed poster from several football players and a bunch of seahawk gear.

They monitored his vital signs every 15-30 minutes and he had no reactions the whole day. They were also able to get him IV fluids today which will make tomorrow easier. Tomorrow will be a much longer day and hopefully we can get through it all without having to be admitted to the hospital.

Another prayer request is for patience as we deal with the hospital and our insurance company. As Max was getting setup this morning we got word that there was a glitch and our insurance company wouldn't cover Max's treatments, we got confirmation this afternoon that our insurance denied our claims to cover Max's clinical trials. Hopefully we can make some progress tomorrow as we navigate the complicated appeals process and search for a new insurance case manager.

Thanks for all the support and prayers today, keep them coming!

Drugs and Side Effects

Max will start his treatment this coming week. He will be on 3 primary drugs chemo (cytoxan), prednisone (high dose steroid to suppress his immune system to keep it from attacking his brain), and IVIG (a blood product that will flush out all the harmful antibodies). There are a lot of side effects that could occur and we are praying that they will be minimal and more importantly that we as parents can understand the pain and side effects so we can treat them appropriately.

Common Side Effects are: nausea/vomiting, loss of appetite, hair loss, low blood counts, bladder irritation, metal taste, hormone changes, heart damage, increased appetite, weight gain, fluid retention, increased blood sugar, irritability, mood changes, headaches, and back pain.

We will most likely continue the chemo for 6 months and the other drugs up to 18 months depending on how he responds. We will also need to pray that he doesn't catch any colds or viruses, because this could cause his OMA symptoms to flair up again and we may need to start the treatment over again.

IVIG and MIBG

We got good news back today. The clinical trial that we are a part of randomly determines the treatment regimen Max will receive. We got the results back today and we were assigned the most agressive treatment. We were really hoping to get this treatment, but could only get it as a part of this study. This is a great answer to prayer and confirmation that we hopefully made the right decision. Chemo has been rescheduled to begin Tuesday and Wednesday, with the trial Max will get another infusion of a biological blood product called IVIG. This means two 9 hour days of chemo.

The second piece of good news was the results of the MIBG scan. This was the test that shows "cancerous hot spots". We are still waiting for the written report but the intial findings came back clean. Even with the cancer being found in the lymph nodes this is surprising and an answer to prayer.

Pathology and Staging

Pathology is back - confirmed Neuroblastoma Stage 2b.  Cancer was found in surrounding lymphnodes, but not in the bone marrow or bones.  Chemo was postponed until next week, so we can continue to get everything in order. Also our clinical trials haven't decided which type of treatment we will get yet. We are waiting to hear if we will get IVIG treatment. If we do get the extra treatment we begin the chemo and it will take place over two days (probably tuesday and wednesday). Full day of training by nurses, pharmacists, dieticians, and OT/PT tomorrow.  We  also hope to get results back on todays spinal tap and MIBG scan before chemo starts. 

                                                                                       

We're Home!

Max was discharged from the hospital this weekend and will now be seen as an out-patient everyday this week.   He did really well after removing the epidural and transferring to oral pain meds so that we can administer those at home. He also did really well after taking out all the tubes and monitors. 

We are settling in at home as much as is possible. It's really nice to all be at home at the same time, since it has been two weeks of at least half of us living at the hospitals. Max is doing well and is enjoying being with his sisters and playing with his toys.  He does get really frustrated because he wants to do the things that he use to be able to to and now can't. We hope to have occupational and physical therapists out to our house this week to help us work with Max and baby proof our house again.  We are also having a hard time keeping him hydrated, for some reason the function that controls his electrolyte balance is off.  We are hoping we can get this figured out soon or else we will need to have him admitted again for iv hydration.

Kari and Max will be meeting with all of the specialists that will follow Max to get a baseline of where he is at now before chemo starts so that we can look for progress as we begin treatment .  We should find out more results about the pathology of the tumor, bone marrow biopsies and the surrounding lymph nodes today.  Max's tumor will be discussed at the Tumor board on Tuesday.  Max has two more important tests that need to be completed before staging can be complete.  He has an LP and an MIBG scan on Thursday.  The MIBG will show other cancerous "hot spots"  in his body. Max had a bad reaction to the anesthesia used during his bone scan before we were discharged so we will pray that he can make it through these tests without any problems.  They have decided to wait until Friday to do the chemo to give his little body a chance to heal a little more from the surgery before they knock him down again.  It will be an 8-9 hour infusion through the port in his chest. Again, how do you keep an 18 month old still for 8-9 hours??