Uncompensated Care

We were blessed this week with a confirmation that our family will be eligible for help from Seattle Children's Uncompensated Care Fund, which will help cover expenses that our insurance doesn't cover completely.  We will be eligible for this help for at least another year. We are so lucky to have an amazing children's hospital so close to our home, as much as we hate the 1-2 hour commute, we truly are so lucky that we don't have to travel to a different state for all of our appointments as so many families we run into do.  I had the opportunity to visit with a new mom of twins, who had one twin diagnosed with leukemia.  They live in Alaska and she has had to move into the Ronald McDonald House with her brand new twins while her husband is at home working. My heart goes out to these other families that live far away or have language barriers.  We have such an amazing support system here, we can't imagine having to move away, but I am confident that God would continue to provide for our needs should that time come.  Thank you to all of you who continue to pray for our family!  

Motor Testing

Max had a bunch of motor testing recently.   He did a great job imitating all the tasks that were asked of him,  lots of stairs, balance tasks, walking, running, jumping and fine motor tasks like stacking and lining up blocks, stringing beads, coloring, etc.   He did an amazing job!   When we tried to do this test 6 months ago he wasn't able to even complete it, he was so fussy, clingy and uncoordinated he wasn't able to finish even one task.  What a huge accomplishment for 6 months.  The best news of all is that he was finally testing at an age appropriate level. 

Physical Therapy Evaluation

It is amazing to think back to this fall when Max was hardly able to walk, sit up or crawl without shaking or tremors and now to see all the progress that he has made is truly a miracle.    After all of his testing we re-evaluated all of the goals that he has been working on with both physical therapists that he sees regularly both at home and at Children's Hospital.

Here are a few of the goals that we made last fall and where he is at:
1. Walk and run around home falling less than 5 times per day - goal progressing still has a ways to go.
2. Max will go up stairs with alternating feet using railing or wall for support - goal met
3. Mas will go down stairs with a step-to pattern - still working on but Max has the ability to do this if he has a verbal or tactile cue to remind him.
4. Max will demonstrate the ability to move from lying on his back to sitting without using hands or rotating his body - still working on - lots of ab and core work
5. Max will kick a ball forward 8- 10 feet - still working on - now up to 2-3 feet without falling.
6. Max will demonstrate the ability to jump up off the floor 1-2 inches independently - still working on - getting close.
7. Max will demonstrate the ability to jump forward  2-3 inches - almost there - still working on

New goals - We will continue to work on previous goals and add the following ones:

1. Max will demonstrate improved balance by standing on an unsteady surface independently while performing a fine motor task for 5 minutes
2. Max will demonstrate improved balance by walking forward 3 steps on a 4 inch line or curb
3. Max will demonstrate improved balance by stepping over 3-5 inch toys or objects on the floor independently.

According to his therapists Max continues to present with deficits in balance, strength, and coordination related to his diagnosis of OMS and his balance and stability can change from week to week depending on where he is at with his medication.

We will begin videotaping him weekly doing the same tasks to watch for changes in symptoms.  We are also supposed to start counting all the times Max falls or just tips over during the day.  This becomes difficult to watch since we usually lose count before breakfast, but we are going to start playing games with the kids to try to make it a fun thing to keep track of your falls. The other major emphasis we are going to focus on is safety.  Trying to keep him as safe as possible in his surroundings by giving him tools to use when his body is feeling out of control. One of the side effects to his medication is decreased bone strength and it can make bones very brittle.  Not a good thing for an active little boy with balance issues to have to deal with. So far God has protected all his little bones and we haven't had any major accidents. Given all the times he falls - this is a true answer to prayer.

Hormones and Growth

We had another checkback with endocrine this last week to do another growth and hormone check. All seems to be well no issue with diabetes and other hormone imbalances.

Our current goals is to try to taper Max's doses to a manageable level, however it has proven to be a much bigger deal than we originally expected.  He is currently at 8mg a day.  A manageable dose for his size would be 1mg every other day.

Over the last few months everytime we have tried to decrease the amount his OMS symptoms flare up. It is also possible that his lone adrenal gland is not waking up the way we expected and when  we are decreasing his medication his body isn't making up the difference.  When this happens older kids complain of extreme fatigue, muscle pain and weakness and an overall sense of feeling yucky.  

Growth:  Max has dropped from being in the 95th percentile to being in the 7th percentile, but he is still on the charts which is a good thing.  The doctor thinks he will have grown 2.2 cm this year, an average kid grows 10.5 cm per year.  At 27 months he is still wearing 12-18 month clothes and his twin has outgrown him by 6 pounds.

He will be eligible for receiving growth hormones within the next year, if we can get him weaned off his medication.  Until he gets taken off these drugs he won't have any more growth. The discussion that needs to occur with all of his doctors is whether or not this is a good idea.  Growth hormones are natural hormones that every one has, but when given artificially it is a nasty shot that would have to be given daily at home. It would also stimulate his whole body to grow quickly including any cancerous cells. The best thing that we can cling to right now is that he has many years ahead of him to catch up and a faithful God watching out for him.

We would love prayer so that we could get him off his medication soon so that he could start growing and reduce the long term side effects.

Speech Update

If you haven't been around Max in awhile you would be surprised to hear everything that is coming out of his mouth.  Of all the therapies he is excelling the most in speech.  We did our six month evaluation to review the goals we set out for him with both of his speech therapists, and it is such an answer to prayer to see all the goals he has met and surpassed in the last 6 months. 

Here are a summary of a few of the goals we set/met:

• Max will add 10 new words to his vocab = goal surpassed
• Max will use pictures and communication boards to communicate needs = goal met
• Max will use words, signs and pictures to request objects/actions, protest, comment, call for attention, ask and answer questions. = goal met
• Max will improve functional communication by answering yes/no to questions = goal met
• Max will imitate 10 names of family members = goal met

Since he has excelled on all these goals he has graduated from seeing the speech therapist at Children's for the summer.  We will continue to meet with our early intervention speech therapist in our home weekly. 

We have established the following goals for Max to work on the next few months:

• Max will begin asking and answering "wh" questions:  Where is... Who is... What is...
• Max will improve expressive language skills to say 30 different phrases of 3 or more words
• Max will begin adding - ing to his verbs - hiding, eating, running, etc..
• Max will improve speech skills by producing k/g phenomes in intial and final word positions:  frog, fork, go, cup
• Max will improve speech skills by producing words with 3 syllables: Elephant, Crocodile
• Max will produce 10 words off of our families functional word list and family names
• Max will indentify and label 3 different emotions: Happy, Mad, Scary

It is such a blessing to know that he has the language skills and cognitive ability to meet these goals, now we just need to get the muscles in his mouth to perform the way he needs them to. 

  Feel free to quiz him the next time you see him =)

8th Infusion - IVIG



Max getting his infusion all by himself no longer needs to sit on mom's lap

 Today after flying in late last night Max and I made it to the hospital prepared for a long day. Max is such a trooper, today he became even more independent. He got his port accessed and labs drawn all by himself without sitting on my lap or even shedding a tear. He is ready to conduct his own clinic visits, he can weigh himself, measure himself and get his blood pressure tested without even being asked. We were at a specialist appointment last week and the dr conducted the normal exam, but didn't check Max's ears, before the doctor left the room, Max walked over to him grabbed his light and put it in his ear reminding the dr that he forgot a step. Today was no exception, now that he knows what to expect he was the ideal patient.   We have had a lot of tests and appointments the last couple weeks as we are finishing up his 6 months checkups with all the different disciplines.  I have a lot to update on the blog and will try to start adding updates as I can on all the details we are finding.

5 minutes later, he curled up like a puppy and took a snooze.
 Slept right through his vital signs being taken every 10 minutes

Dad got to come for a quick visit on his lunch break and
we got to hang out with Aaron our favorite infusion nurse.

Chicago Wedding Weekend

A huge thank you to all those who helped us the past week with the kids so that Josh and I could make it to a good friend's wedding in Chicago.  We had a wonderful time! Kari loved the hot weather, Josh not so much.  It made it to almost 100 but with the humidity the heat index was a lot higher.  Josh served as the best man and entertained the audience with a memorable, humorous and touching toast.  While it was a busy weekend with wedding events, we were able to get out a little bit and sightsee and most of all take a breather from life.   Congrats Brent & Jess!

Our Favorite Family Service Representative

We have not given Children's Hospital enough credit for all the wonderful ways they are taking care of Max and our family. Somedays it can be really tough being surrounded by chronically ill children battling cancer and other life threatning diseases, but there are people like Jessica Spencer who brighten our days. Jessica takes care of our family by being responsible for scheduling all of our various appointments for all the different departments throughout the hospital.  She works so hard to get us a schedule that limits the amount of time and days we have to be at the hospital. She juggles so many doctors busy schedules and tries to make it so we can have a life too. We can't thank her enough for her patience, I will call her several times a day trying to rearrange things and making sure we have all of his labs, therapy appointments, tests, anesthesia, doctors, nurses, dieticians, and all the other appointments Max has to have and she always has a great sense of humor, attitude and is quick and professional.  Max also loves visiting Jessica, he has on several occasions seen her from a distance and will yell her name through the crowd to say Hi. She is always able to get a big smile out of him.  We found out she will be leaving us at the end of this month, and while we are excited for her new opportunities, we will miss her greatly!  Good luck Jessica!

Beads of Courage Update

 Today we filled Max's 3rd necklace full of beads of courage.  The girls have had fun helping him with all his beads.  The last two weeks have been full of appointments, its been busy but at least we keep earning all these cool beads.  For those just joining us you can catch up with our first post about the beads of courage program here.   He has earned 148 special beads in the last 7 months for all the challenging procedures, tests, and pokes, he has had to endure.



Molly showing us her favorite bead. 
It's an iron bird to symbolize all those wingmen out there supporting Max with prayer.

 Yet those who wait for the LORD
Will gain new strength;
They will mount up with wings like eagles,
They will run and not get tired,
They will walk and not become weary.
Isaiah 40:31



4th of July at the Beach

We were very blessed to share the fourth of July weekend with good friends at their beach house on Hood's Canal. The family had so much fun exploring the beach, crabbing, boating, tubing, hiking, and hanging out with friends and family.  We were spoiled with amazing seafood - 42 crab opening weekend.  The kids loved every minute of it.

Children's Dental Clinic

Max had a great dentist appt at children's hospital's dental clinic, they were able to exam and clean everything, Max was extremely compliant.  The dentsits also reminded me about the importance of good dental hygiene with Max.  While his chemotherapy did a great job getting rid of bad cells it also halted the production of good cells that keep his teeth and gums strong and healthy and also help with the production of his permanent teeth.  Chances are Max will be living with his baby teeth much longer than normal kids. 

Luckily, they were also able to locate four very swollen and painful molars that were trying to make an appearance.  Since the appointment we have had one pop through,  we are all anxiously awaiting 3 more to come in =)

Neuro Exam

We had a nice meeting with Max's neurologist, it was our first appointment where we didn't have residents, and other students involved trying to learn more about Max, and we could discuss issues a little more casually. 

We have two different neurologists involved in Max's care, One is the the director of pediatic neurology at Swedish and one at Children's, both have seen at least one other patient like Max in their careers. Although each case is completely different, it is really hard to know what is the best treatment plan, everyone has a different opinion.  We were able to discuss other protocols, however since we have not been able to wean Max to a manageable dose of steroids yet, we are really stuck in the protocol that we are in. The neurologist has done a lot more research and discussed Max's case with other neurologists around the nation, one of the issues that we are also facing is that Children's Hospital doesn't have the materials or labs to be able to follow someone else's treatment plan, so it would require us to fly to another institution frequently.  We really need this treatment plan to work so that we don't have to find a different hospital.  We would really appreciate your prayers for this and if we do need to consult another institution the timing would be very clear to us as parents.

Weight and Teeth

  

What we thought was the beginning of some nice weight gain for Max turned out to be nothing more than an extra full diaper last week when he was getting his weight check. When we checked again on Friday he "lost" another .3 kg. I have no idea where all his food is going...

We also got confirmation that his 2 year molars are coming in and could be adding to his increased fussiness lately.  Molly's molars also made an appearance this last week.  We hope that these teeth come in quick, teething twin toddlers are no fun at all.  But it is a relief to find a reason for all of their fussines.  Max has an appt at Children's dental clinic this week so hopefully we will get confirmation that they are all in =)

Cognitive Assessment

I had a nice discussion with the child physcologists that have administered Max's neuropsych testing the last couple weeks.  They were very pleased with the cognitive acheivements Max has made in the last 6 months.  They have seen significant developmental growth in all areas which isn't always the case with kids undergoing chemotherapy.  They reported that he was performing at age appropriate levels in all areas.  He performed great in his understanding of language and is lacking slightly in his expressive language skills.  Which means he understands more than he verbally shares with us, which we have always known to be the case. They encouraged the continued use of early intervention therapy and will continue to closely monitor him.  They said that chemo effects on the brain can happen down the road and so it is important to keep up with regular monitoring.

It was so interesting to observe all the tests they performed last week. It's amazing to see all the test they can do on a 2 year old to assess how his brain is functioning.  I was allowed to be in the testing room and he was allowed to sit on my lap, but I could not encourage, reword any questions, or respond to him in any way.  He had doctors watching on the other side of the 2 way glass in the room next door and tried to assess how he approached different tasks.  Lots of puzzles, books, pictures, pretend play, etc. I am not sure how accurate some of the scores really were, because the examiner would ask him to do something and he would flash his cheeky smile and do the exact opposite and watch her for a reaction. Several times she couldn't help but laugh because she knew he was trying to tease her and she didn't know how to accurately grade those tasks.

We still have his gross and fine motor assesments coming up next week and a neurological exam this afternoon.  Thanks for the continued prayers, it is so nice to get good news and see all these answers to prayers.

Ocean

We had a chance to getaway to the beach for a couple days last week.  It was so nice to do something fun with the whole family. The kids enjoyed horse rides on the beach, playing in the sand, flying kites, swimming, going on hikes to checkout cool lighthouses and just hanging out.

 

Papa and Max

Grandma and her girls

8th Infusion - Cancelled

Today we spent the day in the clinic getting checked out.  Max has had a flair up of a few symptoms the last couple weeks.  He has had some increased fussiness and irritability, he has become more clumsy and out of control at times, and his therapists have noticed some increased changes in how his body is trying to compensate for his lack of balance and coordination.  He has been clenching his feet when he walks on the floor to try to keep more balance and has been doing more leaning on items to gain support and doing a few other things with his body to compensate.  They have had some concerns about his safety, so we have gotten rid of the baby crib and have him sleeping on a mattress on the floor for now until we can slowly work him into a more permanent big boy bed and are trying to be more careful when his body is feeling out of control, so we don't have any major accidents.

We found out last week that Max was going to be due to skip an IVIG infusion this month, which was a surprise to everyone including the doctors and nurses.  There was some question about whether he was ready or not and after discussion with his oncologist today, we went ahead and skipped it for this month only so we could follow the protocol.  We did go back up on the steroids to try to curb these new symptoms in hopes that us tapering his medication is what caused the change.   If he doesn't improve in the  next week or so then we will go ahead with the IVIG infusion.  The problem is that one of the goals of his clinical trial is to see if IVIG really make a big difference with this disease and for us deviate from the schedule would cause a trial violatioin and could invalidate some of the research they are gaining on Max.  So before we violate anything we want to make sure this flair up can't be controlled by other means.  We are going to keep a close eye on him to watch these things and hopefully this medication change will fix everything and we can continue as planned.   We appreciate your continued prayers as we try to figure out what is best for Max. It is really hard to know as parents how to advocate for your child, we want to try to help gain more research on this disease but are hoping we aren't sacrificing Max's health.  We did discuss that in the future once we get the steroids down to a manageable dose that we will be allowed to treat Max with an IVIG infusion at the onset of new symptoms without any hassles from clinical trials.

Some good news we learned today is that Max gained .2 kg!!  First time he has gained weight in  7 months. The doctors are monitoring his blood pressure and did some more glucose testing to make sure we aren't taxing anything, there could be some potential issues with him developing temporary diabetes which we could treat with insulin if needed.   His hemoglobin and hematocrit were low, but with the amount of meat  Max eats we aren't too worried about that. One of his favorite two word combos right now is "More Meat!" I think he could eat big steak every night if I would let him =)

Sorry for the delay in getting posts up, both our camera and laptop have been on the fritz lately, hopefully we will get everything up and running and can keep everyone updated more regularly.

OMSlife - A support and love site for children, families and friends, battling OMS

We received a very nice letter this past week from a grandfather who has a granddaughter, Alexa,  fighting the same battle that Max is.  He was very encouraging and supportive for what Max and our family have been and will be going through.  He and his family are working on connecting more patients, families and friends dealing with OMS to bring more knowledge of this disease in hopes that we can someday bring a cure. If you have a minute we would encourage you to check out their website. It includes great features and they have compiled lots of information on this rare condition, and if you have tissues handy and feel up to the challenge check out the videos.  We have been asked by doctors to put together video footage of Max as well, but I don't think we are emotionally ready for that challenge yet.  Hopefully soon...

http://www.omslife.org/

Congratulations Madison!

Congratulations on a successful year of  preschool!

7th Infusion - IVIG

Monday was spent at Children’s hospital receiving his first dose of the IVIG without the chemotherapy mixed in.  He did great, it was a shorter infusion time but with dr. visits and labs, still ended up being an 8 hour day for Max. He enjoyed visits from Grandma’s, movies, coloring, visiting with other kids getting infusions, a leisurely lunch and a snooze on grandma’s lap, he was so tired the nurse was able to de-access his port and rip the tape off without even waking him up.  He did really good getting the infusion and had a couple days of being clingy, feeling yucky and extra tired.  The IVIG infusion cans still cause side effects like headache, flu like symptoms with achiness, fatigue and others.   Overall he did so much better without the chemo.  We have even noticed an increase in his appetite since the chemo effects are wearing off.  The steroids make him crave salty foods, so I have been trying to limit him from too many snacky foods.  Anyone have ideas of healthy food that might satisfy his sodium desire?

6 Month CT Scan Results

Great News! Max’s 6 month CT showed NED – No Evidence of Disease or Metastasis!  Thank you for all your prayers!!  

With the news of a clear CT scan we were able to make a schedule for the next month.  We will still continue to be seen weekly at the hospital on Mondays for labs, nursing visits, oncology appointments and speech and physical therapy.   He will have other checkups with other providers like neurology, endocrinology, dental, and neuropsych sprinkled in on other days in the next month.