6 days to go!

Today's Make-A-Wish countdown surprise was disney stickers in all their favorite characters.  Mom and Dad got woken up pretty early this morning with very excited kids reminding us that we had a gift to open and only 6 days left!!

7 days to go!

The big countdown begins! Only 7 days to go.  Here is the adorable countdown board that Janine our Make-A-Wish Volunteer made for us to help the kids understand how long until we leave.  Each day the kids get to open a package. If you can believe it we have twins that will wake up every morning wondering if today is the big day.   7 days in there minds feel like an eternity but hopefully a visual reminder will help all of us control our excitement. 

Make-A-Wish Sendoff Party!

Only one week to go! Make-A-Wish and Red Robin joined
forces tonight to help us get excited and send the family off in style with a great dinner party.

With customized backpacks filled with toys and goodies for our plane ride awaiting us as we arrived. We were quickly greeted by lots of pictures and staff of Red Robin presenting Max with his own staff hat filled with pins and his own name badge and a Red Robin super hero cape, Red also made a grand appearance to top it off!   Max had no idea what to think with so much excitement all around him.  We enjoyed a yummy cake and were presented with a large framed picture of our party and a photo album filled with pictures of our evening courtesy of Red Robin. 

 We had a great meal with our Make-A-Wish volunteers as we got to discuss all our last minute details, I have a feeling we are in for some exciting surprises ahead!



Couldn't fit all the balloons in our car, although it didn't seem to bother the kids. =)

Are you as excited as we are? 
Stay tuned for the countdown!

Weight Gain!

Check out this little belly that has developed!   I don't know many that get excited to gain weight but we are!  In the last month since we have finished the last round of chemo Max has been able to gain a whole kilogram!!    No height yet, but a little progress is very exciting.   We were able to finally get Max's supplements covered by insurance within the last couple weeks and the dietician had bumped him up 3-4 boost or pediasures every day.  Luckily he enjoys them and we even found a brand that comes in a little juice box that makes it easier for him to drink when we are away from home.  They were costing us about about $2 a piece before and now that we were able to get our insurance on board our new company is charging our insurance $550 a month just for his drinks. Since he has had a failure to thrive diagnosis for over a year now it was easier for us to prove to insurance that is was better for them to cover the supplements instead of having to cover G-Tube supplies. Turns out Max needs massive amounts of calories to make any progress in maintaining or gaining weight.  We are up to about 3000 calories day in order to make any movement. This is great news and gets us even farther way from our tube cut off. Woohoo!

May Infusion - IVIG

May's infusion started out a little shaky after we got our labs drawn  and his port was accessed for the infusion we somehow lost the little cap that keeps germs and bacteria from directly accessing his blood stream.  I have no idea how we lost it or for how long it was off, but the hem/onc staff was pretty concerned about this.  They became even more careful to watch for fevers today.  We would appreciate your prayers that there was no germs that made its way into his little body during the time the cap was left off.  They do such a good job sanitizing everything in the hem/onc unit but who knows what kind of bug could be lurking around the hospital.
We got to have our favorite male nurse, Aaron, today and between Aaron and the Oncology pharmacist we were able to come up with a rate that minimized the nausea, yet got us finished within 7 hours.   As soon as the meds got turned on it was hard to get a smile from him, but luckily his cool new semi truck/matchbox car racer kept him busy most of the day and provided much excitement amidst a yucky infusion.

We learned recently that there is a national shortage of the IVIG drug that Max has used. The hospital has made the decision to switch brands and hopefully this won't affect us, but obviously the hospital is trying to be diligent in their supply and making sure it is reserved for the worst cases. We are discussing the possibility of weaning him off of the IVIG soon (after discussion and sign off with all our team members).  We are a little nervous to do any more weaning when we have so many other fluxuating drugs in play and this has been the most consistent drug offering the least amount of long term side effects. Obviously if Max catches a virus or is in contact with a nasty bug we will need to get in for an emergency dose, but usually the antibodies can last in his body for up to 2 months and since we have been getting every month it might be okay to stretch it out a little. We are awaiting comment from our Boston Doctor whose wife recently gave birth to twins, so we of all people are happy to give him a little time off.  =)

Stronger

In case you didn't catch this on the news last night or on facebook, here is an inspirational video by Chris, a Leukemia patient at Seattle Children's.  Here are just a few faces of the kids we get to run into in our adventures on the hem/onc floor at Seattle Children's,.. Several fun nurses too.

IEP's

For all those who have been praying specifically for our IEP negotiations, Thank you, and for those of you who have been praying generally for Max and our family Thank you!! Our prayers have been answered. 

We had an awesome meeting with a team of 10 school district evaluators, psychiatrists, therapists, etc.  At first a little overwhelming as we felt pretty outnumbered, but overall it turned out to be a really good meeting, the school district was soo generous in the IEP (individualized education plan) and was throwing services at us, we knew there was a few things we needed to specifically request and before we even had a chance they were offering the services.  I really appreciated the School District Director, before he met Max he said he really liked his strong name and said it sounded like a name that just might conquer the world someday and he wanted to be a part of that. They did lots of research and wrote extremely detailed reports to assist all the teams. They also built in  flexibility so we don't have to have lengthy IEP meetings or evaluations as Max's symptoms change.

Max was accepted into the school district's developmental preschool, which will have around 5 special needs kids and 5 normally developing kids.  They have also accepted Molly into the preschool as Max's buddy so they can keep an eye on both of them together, which will also help ease anxiety.   Depending on where Madison gets placed for kindegarten next year they may get to have to door to door bus service.  You can be praying that Madison gets placed in the same elementary school as Max and Molly.    We were able to rise to the top of the in-district transfer lottery since she will have 2 siblings attending the school, but the lottery is not held til mid May and they cannot promise a spot until 1-2 weeks before school actually starts....

Within two weeks of the final evaluation meeting we had a meeting with his new team for the next school year, we met his new preschool teacher, Miss Jessie, all her helpers and the OT, PT, and Speech team that will be keeping an eye on him as well as meeting with the District Nurse, who will write the medical plan for Max.  The kids loved getting to tour their classroom and school and cannot wait for school to start next year.

Thank You Birth to Three!

Max officially graduated from the School District's Birth to Three Therapy program this week. Josh and I didn't expect to be in such a sense of mourning following his graduation.  It really feels as if we will be losing several members of our family all at once.   They came to our house every week and joined our family life,  Max looked forward to their time together and would remind me and try to guess what would be in their bag of goodies.  He would eagerly greet them and be ready to get to work.  They taught us so much and helped Max progress so much in one year.  They will each forever be an integral part of Max's journey and completely irreplaceable.  We will all miss them!

Miss Michelle - Speech Therapy

Miss Liz - Occupational Therapy

Miss Meri - Physical Therapy

Madison's 5th Birthday

Happy Birthday to Madison!  We have one excited girl who is very ready to go to Kindegarten.   She is healthy, active and so much fun! There is always a party when she is around, she has become so independent and grown up this month and such a huge help to mom. She loves riding her bike, being active, playing legos or dolls, enjoys reading and swimming and doing art and crafts. She had a special day devoted to her at preschool and got to bring all her special things to share with her class, she told the class that she wanted to be a Doctor, Teacher and Mommy when she grows up so that she could make Max and Grandma feel better.

 

Therapy Graduation

I can't believe that Max and Molly are going to be 3 in a month!    I have such mixed emotions about this milestone,  I'm excited because it means we should be potty trained soon, but it also means Max will be graduating from the amazing birth to three program and losing all of our fabulous OT, PT, Speech, and Special Education services.  We would really appreciate prayers as we try to transition everything into the school district, which is a completely overwhelming process, which I will write more about later.   It looks like we will probably need a trip back to Boston in the next few months or so to meet with the rest of the specialists in PT, OT, and Speech, to train us as parents so that we can in turn train our new therapists.  It was too bad that we couldn't make it work to meet with more people on our last trip, but we did get to meet with an education specialist who helps manage over 30 OMS kids Individualized Education Plans (IEP). She has been such a blessing for us as we begin to navigate the whole IEP/504 process....

The whole purpose of early intervention services is to help the family and the toddler acheive success at home and in the community/school.  Now that we are losing that service we will need to rely on community based therapists to help us acheive success in the daily living challenges at home and in the community and the school district will focus directly on  those areas that he might find challenging at school. 

So we get to pick new community based therapists to carry us through the gap between graduation and when the school district can get started.  Which is a huge hassle to try to get Max accustomed to new providers.  As we are trying them out  I have to be realistic in our selection given the amount of driving time and the therapists expertise given that there aren't any in the area that have worked with a kid like Max. It is a big learning curve to try to train them in a kid like this with an acquired paraneoplastic condition like Max's where the symptoms are so variable.   We have begun videotaping his therapy sessions and cataloging them on youtube for evidence which also allows both our Boston and Seattle teams to be able to review them as needed and to help us in gaging when to taper or increase his medication.

Sleep Study - Results

We met with the sleep disorders clinic yesterday and found that Max **surprise** wakes up a lot at night.   They tracked 139 awakenings throughout the night, in tracking what woke him up, he had 33 random limb movements and a few breathing episodes, but they ended up with 99 spontaneous awakenings through out the night that could not be explained.   This equaled 14 times an hour, which they were a little concerned with.  The doctor that we wanted to see is on maternity leave right now and I had a conversation with the fill in doctor, who doesn't have much experience prescribing medication to young kids. I feel that it is too complex to begin changing medications without someone more experienced on board. We also now have an experienced pediatric Psychiatrist on board to monitor any day time behaviour changes that might be from any side effects from the sleep meds.  We have begun conversations with our Boston Team, Seattle Oncology Team and Seattle Neuro Team, to get feedback on starting a medication at this point now that we have more data. You can pray for this transition it will be so tricky to throw in another medication while we are being so careful in our tapering. At least now we know that he is struggling and hopefully we can come up with something that will improve his quality of life.

Sleep Study

So we couldn't put it off any longer, the doctors are all in agreement that Max needs some type of sleeping medication to help with his sleep disturbances,  but apparently it is really tricky to prescribe and dose sleeping meds to a toddler and even with all the doctors on our team, we will now begin seeing another doctor who will specifically manage his sleep meds.   The purpose of this sleep test is to see what is going on in Max's head and body while he sleeps.   We know that he has issues transitioning from the different sleep cycles that we normally go through and his body has myoclonic twitches and jerks all night that also wake him up.  So we are anxious to see what these results say.  

After much prepping and practicing Max arrived at the clinic and was promptly hooked up, he was so patient and compliant like always, helping the tech to attach the wires and asking if he could help plug them in.   In this picture we were able to attach wires to all of his limbs and feet under his PJ's.  Then we got all 20 wires placed on his head and then we put a cap on and wrapped it with gauze and tape to keep him from pulling out the wires in his. They had to attach all the wires with school like paste all over his body and then kept it attached with tough adhesive and tape. I am so glad Max is a little boy, I cannot imagine getting all that gunk out of a little girls hair.   So after almost 2 hours of attaching wires and getting them all plugged in he was set and ready to sleep.  They had reserved a room next door for mom to sleep since they thought a tech would have to be with him all night in the room, however I guess the rules are that a parent has to be with little kids at all times.  I was bummed since I wanted it to simulate our home environment as much as possible and since he doesn't normally sleep with me it wasn't as normal as usual.  But since he was such a good patient the tech felt comfortable watching Max from the control room across the hall, they recorded all the audio and video all night.  They ended up with 31 wires all recording a specific detail all night.   We are told that it takes awhile to read the results since they have to go through all 31 results in 15 second increments.   He did so well, he had a hard time falling asleep in a weird environment but all the wires never seemed to bother him. He did wake up at least 5 times by my count, but the tech said there were quite a few sleep arousals and wakenings through out the night. However I don't think they were as extreme as at home since I was right there the tech wanted me to calm him down as fast as possible so that we could get back to recording, which again isn't normal because I like for him to try to soothe himself back to sleep so he is not dependent on a parent.  However we are hoping that we got lots of good data that will explain and help us figure out how to properly dose him. 

  

March IVIG Infusion

In the oncology world you get to be kept in isolation until you test out of a virus.  Which means this week even though Max is feeling just fine and having no symptoms he was kept in isolation all day.  He did get another round of virus testing but this time it was sent to the mayo clinic for results so we weren't able to test out today.  Which meant that we got a very private room in isolation, however I felt bad for the nurses who had to completely gown up every 10 minutes when his vitals were checked and of course we got a wonky machine that seemed to alarm as soon as the nurse left the room, I know how to silence the alarms and take his vitals and offered to help but of course they have a new charting system and every little incident has to be properly recorded at bedside.  We got lots of anti-nausea drugs on board very early today and it seemed to help a lot, we also got one of our favorite nurses who just so happened to get stuck helping with clean up last month during his puke-attacks. So she kept an extra close eye on him today so we didn't have a repeat of what she called the "chocolate fountain".  The anti-nausea drugs also helped make him sleepy so he was able to doze off, although as we turned up the rate, he would quickly wake up and let us know his tummy hurt, so we would turn the rate back down and he would become more comfortable.  It is so nice that he is getting older and can begin to communicate these things to us. 

It was a busy day in the infusion clinic which is attached to the hematology/oncology clinic.  An unsuspecting sibling of a patient walked through the waiting room with a rash that turned out to be chicken pox, you can only imagine how quickly the ward shifted into contagion mode.  The drug of the week was IVIG.  Every oncology patient that could have possibly been in the hospital that day got an infusion to boost their immune system, so the unit was a well oiled machine when it came to Max's regular infusion and all patients were checked for spots and educated. 

His labs are looking really good, his lymphocytes and ANC numbers have all started dropping like we have been hoping, the chemo seems to be working, we are hoping for more of a decrease and hopefully that will come in the upcoming weeks. The chemotherapy drug that he is on should keep the attacking antibodies at bay for 4 months. Which means that we are ready to start trying to taper his steroids to actually see if this agent is going to work for Max.   We would appreciate your prayers as we do this,  we are really hoping that this new treatment worked and will hold for awhile and we won't see any breakthrough symptoms. We thought we went slow last year with our taper, but now we are going even slower.  We had originally hoped to have him tapered over 4 months so that he would be off steroids before the new antibodies would begin multiplying, but our oncologist told us otherwise, realistically we shouldn't  expect to be off the drugs for another year or so.  Which we were prepared for this given that many kids in this situation remain on steroids for 5-7 years. This means weekly lab visits, dr appointments, many many therapists working with him to watch for new symptoms, monthly IVIG infusions, and another year of a weakened immune system. 

Max did have a harder time getting his appetite back after this infusion, it took a good 4 days before we saw him back to normal.   This brand seems to give him more of the flu like symptoms, which is completely normal, but we may consider trying another brand soon to see if it works any better.  We are up to 3 supplements a day with pediasure or carnation instant breakfast, hoping to get the majority (1000) of his calories from supplements,  he also gets them topped off with whipping cream.   He is very good about drinking them, I can hardly stand the smell of them when I make them, but as usual he is so compliant.

Human Metapneumovirus

About a week ago Max contracted the Human Metapneumovirus (i.e. a cold).  Luckily again many of the medications they would use to treat him he has already been on so there wasn't much we could add.  He did spike a fever of 102 with tylenol which is a big no no in the oncology world.  So they tried to drown it out with massive amounts of fluids so after two days in the hospital and three big bags of fluid later his fever dissapated and he was back to his normal self.  However due to all the kids in the oncology ward with weakened immune systems like Max, he gets to be in isolation for awhile.  Which isn't a bad thing, because we usually get very private rooms and we aren't allowed to wait in the waiting room, which means they have to get us through the clinic faster. 

Our little ski bunny

We had a chance to get up to the pass for an evening of skiing with the family.  By the end of evening she was on her own no longer needing any assistance.  Had a hard time capturing a video, couldn't ski backwards fast enough to keep up with her.

http://www.youtube.com/watch?v=TK4MV3bBbHE

February IVIG Infusion

After a year and a half of these infusions you would think we would have the routine down.  However we switched brands of IVIG a couple months ago and I guess it has just now caught up with him and today was spent with lots of tummy aches and vomitting.   Mommy was not prepared for enough outfits for either one of us.  We have escaped much of the nausea up until now, so after playing around with some anti-nausea drugs we will now be adding it as a regular premed so we don't have another day like today.  We were very ready to get home tonight and take showers....

All boy...

Virus Free

Max's virus testing came back clear this last week,  the very minor cough that he had seemed to taper off and no additional symptoms appeared so we are good.  There are so many respiratory viruses going around right now, if you or your family is suffering from them,  we are sorry.  We have been soo lucky not to have been affected by too many viruses this year and with three preschoolers this is a true miracle...  Please don't be offended if we aren't attending as many functions as we normally attend.  There is just so many bugs out there right now and apparently the actual flu virus hasn't even hit yet so we are in for a late flu season.  Luckily Max is so good about keeping his hands clean and not touching his face or putting things in his mouth, God has blessed him with a clean gene.  We know so many parents who have pulled siblings out of school while on Rituxan, and put their family on lockdowns, but after discussing this option with our doctors and Madison's preschool teachers we have decided to let her continue to attend, they are great about letting us know if there are bugs going around or even something scary and then we can call the doctor and make the call whether to send her or not.  The girls have had to give up so much this year, we would like to allow them to have some fun when they can.  They have all been so helpful to keep our house germ free.  Madison is in charge of spraying lysol on all of our doorknobs and light switches everyday and Max and Molly are professional wipers on all surfaces they can reach.  I have even caught the girls putting purell on the hands of their baby dolls. =)

Chemo #4



After an exciting morning, exhaustion set in

Sorry for the delay in getting these posts up.  Max had his fourth treatment on Monday and we had a busy day planned,  the team wanted Max to have another appointment with a specialist in the afternoon so they were hoping that we could shorten the infusion time to make it a shorter day and allow us to get in and see this specialist who usually has a 6 month waiting list to get in to see him.  When we got to the hospital early in the morning we got everything going pretty fast, but our team hadn't communicated to the nurses or oncology pharmacist the infusion rate that needed to be kept in order to cut down Max's time, so there was some discussion about the rate.  After getting our premeds and clearance from the hospital to get an exception to shave a few hours off,  the infusion commenced, they turned up the rate and we settled in for a long day.  However, within a couple minutes of turning the rate up Max started to cough a couple times and then started gagging like he was throwing up, I turned around to grab the vomit basin and then when I turned back around it seemed I had the whole unit in our room, at the time I didn't realize what was happening but all the doctors and nurses knew what to be looking for and knew what was going on.  Max's stats were dropping and he was having a reaction.  It seems his throat was closing on him from the infusion, I guess this can be common, but it came on so fast I wasn't expecting it to start with just one cough.  He didn't even have time to tell us what was going on and of course he was so scared he couldn't even point or show us what was wrong.  Luckily they had oxygen handy and a shot of epinepherine close by to help, they also immediately shut off the infusion.  We had a little scare, but after some observation time and lots of discussion whether to continue the chemo, we decided on the new premeds to be given to try to protect against this in the future and then we gave it another try,  I guess Max is a low and slow kinda guy,  I cancelled the rest of Max's appointments, and they kept us for observation until the unit shut down for the evening at 7pm. The rest of the day went much smoother.



Corndogs make everything feel better for a two year old....



Hair...

We have had lots of questions about hair loss during this round of treatment.  The Rituxan doesn't usually cause complete hairloss like other chemo drugs since we are trying to target a very specific cell line, but with the additions and increase of all his other meds, Max has experienced a bit of hair thinning and loss. He was losing it in his bed and when you ran your fingers through it it would come out, it was also pretty itchy for him so we have been keeping it cut short to keep it from getting too annoying.  He has a few bald spots but with his light, fine hair it isn't too noticeable to the general public, it also helps that he is a boy and can sport it well.   

Chemo #3

We had a much better day on Monday. It was a long day but more pleasant than the others. We left at 7:30am and returned home about 7pm. Max developed a little cough which if it would have been any other kid I wouldn't have noticed, but because we have to be so careful of infection right now we took note. They did viral testing to see what type of virus might be in his system if any. His lab counts were all over the place yesterday due to all the manipulation that we are doing with chemo and medication, so we weren't able to tell what is going on in his blood. I don't think it is anything to be worried about, but always better to be on the safe side, we should get results back soon. We also have to be cautious of pneumonia right now it can silently crop up and they think his system is able to produce a fever so if we get to 99 than we get an ER visit. He is on the same antibiotic that he has been on all year which should help protect against one specific type of pneumonia. So we will watch the next couple days just to be sure. The infusion part of the day went really well. If you recall benedryl is not a good friend of Max, so we were able to discuss another drug option with the pediatric oncology pharmacist, but since benedryl is the best that there, we tried another drug but had to run the the infusion low and slow, knowing that if anything came up we would still need to give him benedyl. Luckily it all worked out, and the new drug worked well, Max lounged on his hospital bed without getting down for 6 hours straight. He took a great nap, played a little with some new toys and just took it easy all day.

Narcolepsy??

Even though Max feels yucky at times. Life still goes on.  I love how Max just conked out in the middle of Costco.  Didn't even wake up when Molly spilled all of her sample foods on his head. =)

Glucose and Growth

Max had a good glucose check this week, but we still got to hang out with our favorite endocrinologst.  When we were able to decrease his steroids the first two weeks in December Max actually grew almost 1cm.  I was very excited, because this means that he is able to produce a little bit of hormones, but the doctor told us not to get our hopes up 1cm isn't very much and now with the increase in steroids we won't be seeing any more growth for quite awhile.   He also lost a little bit of weight since we have started the chemo.

The only problem is that with this little bit of growth it has slimmed him down more than he already was and his pants aren't fitting any more, even his pullups just slip right off when he runs, so he has mastered the art of grabbing his britches and taking off.  We have increased the amount of supplements that he is getting in hopes that we can bulk him up a little.  We are running some more tests on the actual functioning of his pancreas so that we can start to monitor closely, they are also going to get us set up with a class on how to use a glucose monitor and track his blood sugars.  But there doesn't seem to be any immediate need to begin insulin.  We will wait to get more of the results back this week.

Chemo #2

Since this was a subsequent infusion we were able to try running the infusion a little faster today, which was nice in theory it made for a slightly shorter day but was much harder on Max. No smiles today. The benedryl was run by iv for 45 minutes to try to decrease the effect on his body, they even added a little fluid to try to dissipate the meds, but there was no tricking Max, he was pretty uncomfortable and not his usual self. We got our favorite infusion nurse Aaron and he was so bummed that Max didn't feel like playing with him today. Aaron thought Max had a really bad reaction to his premeds but I thought it was a lot better than last week. Once the effects of the benedryl wore off Max was finally able to fall asleep just about the time we were ready to shut off the infusion. We were excited to get home so Max could feel a little more comfortable.

Chemo #1

What is God trying to teach us? Are we handling this whole roller coaster so well that he needs to throw a wrench in it and make it a little more difficult. Last year we endured a 9 hour car ride home the night before Max's surgery and a snow storm and got stuck on I-5 when it shut down and this year the snow/ice storm hit just in time to change all of our plans. With that nightmare in the back of our heads it just meant a little more coordination, so we had backup plans and backup-backup plans and then worse case scenarios just in case.  With hotel or hospital bags packed, enough food and meals to last everyone all week, luckily it all worked out. Tuesday Max and I left at 5 am to make it to the hospital in time for his first chemo treatment. Child care for the girls went smoothly and we were able to get out by 7pm in order to make it home before the next storm hit. We went back and forth with our doctors and staff about what to do with Max, he needed two days of treatment and another day in the clinic with the pending storm it would require us to stay in the hospital all week, which I wasn't excited about being separated from the rest of the family and also risking our insurance not covering our hospital stays if it wasn't entirely needed. But we also had to be within 1 hour of the hospital in case a fever struck. We decided to get the necessary chemo part taken care of on Tuesday and than reschedule the rest of the appointments and infusions on Thursday and Friday. They had a hard time keeping the unit staffed on Tuesday and knew the rest of the week would be worse.

We got through labs and dr appt and got Max premedicated really fast to try to be as efficient as possible so we could get home. BUT Max turned out to be that 1 in 15% that has the opposite effect to benedryl, which was a required premed due to the risk of an allergic reaction. So instead of gently falling to sleep like most kids, Max went completely ballistic, shaking, twitching, screaming and totally uncomfortable, I was unable to console him and it made getting an infusion even more unpleasant for all of the rest of the kids who had to listen to Max. The problem was that this continued for two hours during the start of the chemo so the doctors and nurses had to keep an extra close eye on him to make sure it wasn't him having a reaction from the chemo. They slowed down the rate of infusion, so much that the pressure of his blood was heavier than the rate going in and several times his blood would pump back through his tubing. Luckily we were able to get him to at least settle down a little which made his blood pressure decrease and then when the benedryl wore off Max was finally able to sleep. I am sure he was completely exhausted, than when he woke up Grandma and Papa showed up after Grandma's chemo day to play with him which made the rest of the day much better.

New Plan....






Trust in the Lord with all your heart and lean not on your own understanding, in all your ways acknowledge Him and he will direct your paths (Proverbs 3:5-6)



No More Cookies....

As parents it is so hard to know what is the best option for your child, all options have side effects and risks associated with them. If we aren't aggressive enough we run the risk of developing long term brain damage, too aggressive and you can have scary side effects and long term issues. As all of our doctors have said, Max has shown so much potential in all of his testing which means we have so much more to protect. As parents we prayed that the right decision would be very clear to us and Monday morning God delivered. When we started our normal weekly testing we found that his glucose levels were elevated, something we have been waiting on for awhile, it looks like Max's pancreas is starting to get overworked, this last increase in steroids must have done it.  We are going to watch his diet very carefully this week and then discuss insulin next week, luckily steroid induced diabetes should be reversible as soon as we get him tapered down on the steroids.  So this new news ruled out two different treatment options currently available for Max, and as God promised we trusted in Him and the path was very clear. 



So we start a new round of an oncology drug called Rituxan next week.  He will receive this by infusion at Seattle Children's along with his IVIG infusions.   We are in the process of screening for several viruses that Max may have dormant in his system, if he has any of these dormant viruses it can cause major issues including fatality within 24 hours of receiving this drug.  The other problem is that he has been receiving IVIG infusions all year which come from donor blood, so the chance of someone else who donated the blood who may have had these harmless viruses are elevated.   Luckily, the UW has a world renowned virology lab and they are processing all of his blood now and should be able to tell if Max has any of these dormant viruses or had contracted them from his infusions.  We are praying that everything comes back negative this week so that we can proceed with treatment next week. 

We will do 4 or 6 weekly infusion treatments at Children's and continue with his steroids and IVIG treatments.    The last type of chemo that he had, attacked several cells in his body in hopes that we could get his immune system to reset.  It sounds like we tried to give him a dose just beneath a level that can cause all the nasty long term issues like infertility and blood cancer.  It seems that we may not have given enough, so instead of doing another round of the same stuff we are going to switch it up in hopes that we can trick his immune system.  This new treatment is more aggressive and should completely eliminate all of his b-cells in hopes that when they grow back in the next 6-9 months that they will be fixed and no longer attacking.

I have tried to simplify everything as it can be complicated, overwhelming and lengthy, so if you are one of our folks in the medical industry and you are interested in more information or you have more questions let me know and I can try to address them in the upcoming weeks.  We are excited for this new plan and a little nervous at what the next few weeks may hold, but most of all we are very appreciative of our friends, family, and community praying for us and supporting us through every step of the way, we have a peace that can only be from God in the midst of a stressful time.  Stay tuned it sounds like we have a big month ahead of us so keep those prayers coming...





Physical Therapy - Sarah

 We love playing with Sarah at Children's Physical Therapy she takes care of all of the Oncology patients at Children's.  We learned recently there has been so many cancer kids in the hospital that she will be moving to inpatient therapy only.  She is trying to make special arrangements so she can still see Max as an outpatient because they have a special bond.  Sarah shares our love for the UW Huskies, and she was actually married on the field of Husky Stadium.  We appreciate her cheerful attitude and all the encouragement she gives Max to keep trying and it has paid off as he is doing so well accomplishing all of his goals.  We are very lucky to have had the chance to work with Sarah.

Miracle Flights

Miracle  flights so graciously  supported our family in providing airline tickets at a minimal rate.  The best thing was that they handled all the reservations and booking the tickets, one less thing for mom and dad to have to do.  They also let us know that they want to continue to support us in the future and will help us with all future medical flights that Max might need.  What a huge blessing.  Check out our story on their website at  http://www.miracleflights.org/how-we-help/childrens-stories/story/max/

Boston

  

  

 We had a great, but brief trip to Boston. Had a wonderful meeting with doctors who provided lots of education and options for us. We meet with our Seattle team Monday morning to discuss. We were able to stay at the Ronald McDonald House about a mile from the hospital. It was so nice to stay at a place that felt like home, Max had a hard time parting with their fun playroom. They even had a personal refrigerator ready for all Max's medicine that needed to be refrigerated so that it could be kept close at hand. We only had a couple hours to sightsee before our flight left so we were able to visit the USS Constitution and walk the Freedom Trail for a little bit. Max did wonderful on all the flights we had many people comment on how good he was, he even slept for four hours on our first leg. Thanks for all the prayers, while we have a lot of questions and decisions still to be answered, we have a sense of peace that we have the right people on board to lead us. Stay posted for more details....