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