Outpatient, Round 2

May 13th, 2013

Rituxan, Round 3, back to the infusion clinic.

This week Oliver played with nearly every toy in the waiting room (literally left 3 on the shelf).  We tried to warn the Child Life people, but I don't think they took us seriously.  In fact, I know they didn't until they took another kid out there and discovered the empty shelves and overflowing "dirty" toy bin.  Oh well, we waited 45 minutes to be called back- what do they expect? :) (because of the cost of the drug and potential for no-shows or cancelations due to white counts in chemo kids they do not order the drugs from the pharmacy until we check in and sometimes it takes 10 minutes, sometimes an hour before they arrive).  

This time, when they took us back for height and weight, Ollie stood on his own!  Such a little thing, but really cool when the nurse commented on how much better he was doing.  We realized again today what an easy-going kid Oliver is when it comes to all the pokes and such.  The nurse (a new one this week) started to take us into one of the 2 rooms they have on the unit (versus the little cubby type sitting areas).  We said we would prefer not to be in a room since it was nicer to be able to look out the window and she said they use the rooms to access the port so it doesn't disturb the other kids.  I guess Taylor and I must have looked confused because she said, "you know, when he cries?"  It was pretty neat to be able to say he doesn't cry when he gets his port accessed.  (and thankfully, he didn't make a liar out of me!)  This week, we had put the EMLA cream on at home, so it was ready to go when we arrived.  The nurse had a swift hand and he was hooked up, ready to go in no time.  Although, it wasn't fast enough for Ollie...he wanted to go visit the nourishment room immediately to get his sherbet fix.  

As soon as he was hooked up, we went to the Dugout and started playing.  Shortly after, one of the Child Life staff asked me if we would be there all day.  When I said yes, she asked if I would like to go to the spa for complimentary treatments.  Umm....YES! said every mother everywhere.  I felt a little out of place (and VERY blessed) as the 4 other moms that I went with had chronically ill children who had spent more of their life in the hospital than out ( A 15 yo waiting for a new heart, a 25 yo who had almost died after receiving his new heart in January, a 22 year old with cancer and a 6 week old baby who had never left the hospital).  We met in the lobby and were whisked away in a limo to Avisa Salon and Spa on Plymouth Rd in Ann Arbor.  The staff had given up their usual day off to treat us to services- I got my eyebrows waxed, nails shellacked, hair masked and cut.  What a huge blessing and a nice treat post-mother's day.  

When I got back to the infusion unit at 2, Ollie had played in the dugout the entire time!  We made clay handprint for Nana's Mother's day gift (we had given Mimi a large canvas portrait of one of Ollie's 2 year old pics already).  Aunt Sarah came shortly after with pizza for our lunch...THANK YOU AUNTIE:)  Oliver had his own low-sodium lunch while we snacked and visited.  He watch Little Einstein's and sang along with the theme song.  

When we expected we would be leaving, the nurse came by to say they didn't think it was a worry since Oliver was acting normally, but they had called for a doctor to take a look at him since his heart rate was elevated.  When the doctor came in (to the dugout, we were back to playing, again:) he had a difficult time determining which kid had Opsoclonus (the eye movements)!!   He observed Ollie, didn't even listen to his heart, and declared him clear to go home.  

When we got home, Nana had made spaghetti for dinner...Daddy took advantage of the late sunset and went out to play a few holes, but Aunt Sarah, Mama and Nana joined Ollie for dinner.  He insisted we eat with him at his little table in the living room.  However, he only has 2 chairs...so, Aunt Sarah sat in a bean bag and Mama sat on an exercise ball.  Ollie thought it looked fun, so he ditched his chair for a smaller version of Mama's ball.  We had some good laughs and made a great memory! (And, I'm fairly certain my mother never DREAMED she'd allow us to eat spaghetti over the living room carpet:)

Mother's Day 2013

Precious MOMents

Daddy and Ollie gave mama a wonderful treat this mother's day morning (aside from the fact that our child was acting almost completely normal by this time...)  I got to sleep in!  I was up and at 'em by 9, but that was a 3 hour extension of my normal sleep time.  Taylor and Oliver had made me a special project while I was asleep, they traced Ollie's hands and made me a card:)  It was wonderful!  We were playing outside in the pretty sunshine even before Nana and Sarah left for church (Papa had to work...the first time he has EVER worked on Mother's Day since I was born!).  I encouraged Taylor to go to church and I soaked up the time with a happy baby...Oliver is easy-going and super happy most mornings.  

The first time Mimi and Papa came to visit after Ollie was released from the hospital (the first time) and was still sort of mobile, Mimi made up a game called "shoe boomba".  They would line up Ollie's shoes on the outside of the stair case and poke them through the spindles to make them fall down- "go boomba".  This is an exhausting game....lots of up and down!  Well, Oliver decided he wanted to play again today.  I played with him for awhile, but I needed to make his lunch so he could go down for his nap on time.  The kitchen is right off of the back hallway, where shoe boomba is played, so I allowed Ollie to keep playing on his own.  His lunch of PB &J (sodium free, except for the bread) doesn't take but a couple of minutes to make....so, imagine my surprise when I walked in on this:

Little man decided to CLIMB UNASSISTED onto Daisy's kennel so that he could put shoes on the highest steps.  Being the concerned mother that I am, I made sure he was steady and ran to grab the camera (relax, it was only a few steps away).  Oliver obligingly smiled for the camera (behind his hand) ...it was easy to tell he was very proud of himself.  I obligingly scolded him, then practically cried from joy.  Needless to say, I moved the kennel so he wouldn't be tempted to repeat this feat. My little stinker.  Shortly after this performance, everyone returned home from church and we got Ollie ready for nap time.

When Taylor put Oliver down for his nap, he prayed with him before hand that he would wake up happy-  lately the time between nap time and bed time has been tough.  Apparently, waking up is really challenging for OMS kids since every one of their sense (particularly their eyes) is overloaded after having been asleep.  According to Nana's note in Oliver's journal:  "Nana and Papa (Sarah too) kept you in the afternoon-evening so mom and dad could go to Avery's baptism!  You were a peach, woke up happy from your nap- ate and played until bath and bed. What a sweet boy!"  Thanks for watching our boy....we had a wonderful time sharing Avery's special moment with her and the family.  

uneventful is good...

May 7- May 11, 2013

There are times when having nothing to report is a good thing...This week was one of those....

Aunt Sarah had been with us all weekend (I think it was longer, but I honestly can't remember...) and was getting ready to leave to go back to school.  She asked Ollie if she should go back to school and he said, "NO! TAY HEEAHR" (no, stay here)  Auntie was pretty excited that he didn't want her to leave.

Ollie played with his zoo LOTS this week...setting it up, and making it go "boomba"!

He is laughing, talking and crawling pretty well...he even tried to do some assisted standing and walking.

He seems to have slowed down his eating.  On the 7th he went for a 3 hour stretch without eating....currently, a record while awake.

Ollie is less angry and easily frustrated, but he is still very bossy.  Usually in a playful way, though.  "tit heeahr" (sit here) and "you do et" are frequently repeated...but sometimes with giggles and not as demanding.

On Wednesday the 8th, Ollie started the day with an OT appointment with Rose.  Taylor says she is a free spirit and focuses on the sensory side of things.  Ollie enjoyed the exercises they did...especially the part where they swung him in a blanket.  Mimi, Papa and Aunt Ashley came to visit in the late morning.  Daddy ran some errands and Auntie Ashley let Ollie eat whatever he wanted ;)  It was a salty day, but he didn't seem any worse for the wear and most days he is well under his limit.  Ollie did not want to nap while "mimi papa down theya (there)", so he was VERY tired when his 6:15 pm PT appointment rolled around.  Laura came to meet us and watch Ollie play.  She won his affections by giving him a cereal bar that he was asking for, but he still would not perform any "tricks" for her.  She and Taylor chatted and planned for future visits to be in the morning.  Oliver's best time of the day is from 6 am until about noon when he starts winding down for nap time.  Taylor and I both did a double-take when we first saw Laura-  she reminded us of our friend Anne Ledbetter...she even has a southern accent!

The rest of the week, Ollie was very fun.  Full of smiles and kisses, he played lots of puzzles on the iPad- which he hadn't really done much since the first couple of days in the hospital.  While we were getting his meds ready Saturday morning, Ollie started pulling out all the things he is allowed to eat and basically made his own breakfast!  Starting to walk pretty well now.  He was even trying to mimic Nana's PT routine while standing on pillows.  What a guy.  Then, Auntie Sarah surprised us by coming BACK for another visit for the weekend (and Mother's Day- but we like to say it is all about Ollie!).  He kept telling her to "go way"- she should have known better than to come home between nap time and bed time.  He isn't in his best form then.  He quickly warmed up again and was very happy to have his Auntie back.

Not too much excitement, but every moment and milestone is precious to us right now:)

Ollie's Mimi helping him with lunchtime:)

He LOVES her Mickey shirt!

a little unsure....

May 6th, 2013

Ollie playing with the puzzle book he got from the Sunday night Life Group at A2 C of C.  

He LOVED it!  Thank you!

Oliver had his first outpatient infusion beginning at 11am.  But first, he had an abdominal ultrasound to rule out causes for his extremely distended tummy.  Unfortunately, that test came along with a nothing by mouth order from 6-10am when they would perform the exam.  It was an answer to prayer that Ollie was fairly easy to distract that morning.  He woke up just before 6, so we gave him a few bites, some milk and his meds.  Then we played with toys upstairs, downstairs, and finally took him outside.  I walked all around the yard with him.  Thankfully, we passed enough time to be able to leave for the hospital.  Oliver wasn't thrilled about getting in the car...every trip he'd been on lately ended up at a hospital or doctor's office.  He used to say "GO BLUE!" when we passed the stadium, but he won't anymore.  We could see if from the hospital- at the time, it was fun to say "GO BLUE" and feel normal, but by now, it was not a fun memory.  I was a little unsure how he would react when we pulled up to Mott.  Thankfully he did really well and stayed calm.

We checked in at the radiology desk to await the ultrasound tech.  There was a really cool piece of (?) artwork that was a perpetual machine moving marbles around.  I can't explain it, but it was neat and easy for Oliver to enjoy.  He was definitely not a fan of the ultrasound...especially the part where he had to lay still.  He cried hard...and he does not do that often.  I knew it wasn't hurting him, but it was  hard to watch.  The tech said he really did better than most kids- he hadn't started crying until about 20 minutes in.  He got to pick out a new pillow case for being a good boy (a volunteer had apparently made hundreds of cases...it comes in handy since he is sweating so much at night:).  The tech said she thought everything looked normal, but we still had to wait for the final word from the doc (which came by mail a few days later with an all clear).

We left radiology on the 3rd floor and went up to the 7th floor to visit the infusion clinic for the first time.  We didn't wait very long before they called us back, but Oliver managed to eat some sodium free chips, a slice of swiss cheese, and several pouches in that short time.  They had to get his current weight and height to determine the proper dosage for the Rituxan- he was quickly gaining weight.  I distinctly remember that we had to hold Ollie in our arms on the scale because he still couldn't stand up on his own.  After that, we sat in our little cubby and met with our nurse, Shannon, to view the protocol.  She put EMLA creme on Oliver's port site so it could start numbing while we discussed the process.  Shannon was able to access Oliver's port without so much as a whimper from him.  She said he didn't even flinch! (I couldn't see since he was on my lap).  He got oral tylenol, they drew blood for labs from his port site, then hooked him up to the IV for Benadryl (Rituxan can cause an allergic reaction in some cases). and dexamethasone.  Around 11am, the infusion began.  Oliver did really well, no reaction and vitals remained steady.  We even ventured into the "Dugout"- the Child Life Services play room for the chemo/infusion kids.  Taylor and I had been warned about Oliver's suppressed immune system, so we were a little hesitant to let him play there.  Other kids and germs could be lurking.  As it turns out, (duh) every kid is immuno-suppresed, so the staff sanitizes every toy that is touched (they go into a trash can- or toy bin- when the child is done so they can be cleaned).  We felt more comfortable with the toys and remained vigilant for kids who might be showing signs of illness.  (most kids are on chemo so they can't actually receive their treatments if they are sick resulting in a much smaller chance of exposure to an ill child).  Oliver touched nearly every toy he could get his hands on and played hard for over an hour.  (I think he sees the empty toy bins as a challenge:)

 Ollie in the Dugout.

Thanks Inge family for the generous gift of play!

After play time, we took Oliver back to our little sitting area and he took a nap. Ollie's diaper leaked (thank you, IV fluids) and the little guy was so sweaty I was soaked everywhere else, too.  But it was good snuggle time and thankfully I had brought a cloth diaper from his newborn days for him to sleep on.

We are beyond ecstatic that Ollie tolerated the treatment so well and praise God that he never had a neuroblastoma to deal with.  8 1/2 hours later we left the hospital to head home.  Ollie had his meds, dinner and went to bed, exhausted.

 Yum, bomb pops!

Sunday Silliness

Sunday May 5th

Nana, Papa and Aunt Sarah babysat so that Taylor and I could go to church together.  It was awesome, we had so much to be thankful for and we were excited to share Oliver's progress with some people there.  My note in our journal from that day "We are seeing in the natural what is a completed healing work in the supernatural! Praise God!!"  Oliver was really good while we were gone and spent most of the time playing zoo with Aunt Sarah.  She is supppper silly and always makes Oliver laugh.  She kept saying, "2 lions and an Auntie" and she'd pop her head up from behind the zoo...Oliver was belly laughing.  It was so good to see:) 

Oliver got this zoo for his first Christmas from Nana and Papa...Nana thought he was a little young for it, but humored me and got it anyway.  She was right (there it is, for everyone to see, forever).  Oliver barely touched it until this week.  Now he loves it.  "I play zoo!"  He knows all of his animals and the sounds they make (well, some, like the flamingo are just birdie and he doesn't know what sound they make....do you??).  He puts the families together (our neighbors gave us a Fisher Price Noah's Ark at one point that had lots of pairs of animals) and tries to find a place on the zoo for every animal, zookeeper and farmer he has...which is A L O T.  Since he has shown interest, all the adults in his life have decided we need to have the entire collection of Fisher Price Zoo Talkers...and we generally look for them in every store we visit.  In Nana's case, she played the sick kid card to get a price match at Toys R US:)  (She'll tell it slightly different, but I like my version better:)

Breaking the Law with Nana

(that sounded more rough and tumble before "Nana" was added)

Saturday May 4th

When a mother leaves her child with her own mother when going to work, the last thing she expects when arriving home is that they will have broken the law together.  I was only gone 6 hours!  Actually, Nana initiated Oliver into a long-standing Hoffman tradition.  "Driving in the neighborhood" is something every Hoffman child can remember doing.  We'd pull over when entering our sub and my dad would let one of us climb into his lap and "steer" the car.  I love that Nana let Oliver take a turn.  Hopefully we won't be hunted down for violating any laws.  As you can see, he loved it:)

Oliver played legos and memory with Nana for an hour and a half!  That is the longest he has done any one thing (besides sleeping) since onset.  He is really trying to do more and skills are improving with each attempt.

The biggest daily struggle is still food.  It just seems like he can be satisfied.  At least most of it is somewhat healthy.

BIG DEAL moment:  When I got home from work, Oliver hadn't napped (over 2 hours past the normal time) so I put him to bed myself.  I was kind of thankful for a few moments to grab a nap and then update the blog....so I was the tiniest bit annoyed when Oliver started calling for me only a few minutes after I laid him down.  When I went into his room, he was STANDING!! at the crib rail (with a poopy diaper).  He really hadn't tried to stand at all prior to that instant.  It was so cool to see, just as cool...after changing his diaper, he went right back to sleep.

More fun with side effects...

Friday May 3rd.

We have been constantly reminded why we generally seek the path of most natural healing...side effects are popping up everywhere.  Taylor took Oliver to the pediatrician today because we noticed white spots in his mouth and suspected thrush (from the preventative antibiotics...even the probiotics couldn't keep it away this time since his immune system was so suppressed). Dr Dumont confirmed and prescribed liquid Nystatin. Oliver loved the Nystatin and the only challenge was getting him to let us apply it to his mouth without him sucking out the contents of the dropper first.

Dr Dumont also examined Oliver's belly as it is drastically distended.  (If he were pregnant, I would anticipate a herniated belly button at any second.)  The doc noted that Oliver's liver placement was low- whatever that means.  Taylor called the neurologist after the appointment and reported what the pediatrician had said.  Dr Leber ordered an ultrasound for Monday when we would already be at the hospital to begin Rituxan infusions.  As a mommy, who was not at the appointment and therefore felt like she missed some critical piece of information, I was somewhat comforted that they didn't feel it was so urgent that he needed an ultrasound immediately.  

 Praise God, we are down to one ACTH injection a day:) Despite the decreased dosage, the ACTH is causing Oliver to sweat profusely while sleeping.  Naptime or nighttime.  Despite the air temperature, fan speed or number/weight of blankets, he sweats through the pillow case and sheets.  I have gone back to "soaking diapers" mind set and put an extra sheet protector covered with a large receiving blanket on top of his actual sheet which has the same set up repeated underneath the mattress pad.  We can peel off the wet top set in the morning and the sheet and bottom set after nap time.  So, we only change the entire bed once a day at most.  (every now and then, it isn't necessary to peel a layer)  We have also figured out how to add an extra mattress protector to his pillow so only the case and protector need to be changed and the pillow itself doesn't get wet.  Necessity is the mother of invention:)

Napping with daddy

SUPER SKILLS

SITTING!!

4/30/13:

Oliver woke up at 1:30 am and was able to fall back to sleep in our bed, but woke up at 4 am raring to go...Somehow I was able to get him to sleep until 6...I think he ended up between us with his head toward the foot of the bed.  (We could really use a king size bed, but at least the dog doesn't get in bed with us anymore!)  He has been pretty consistent with his 6 am wake-up time since then...some days (few and far between) he will sleep until 6:30 or 7.  

Oliver used to help unload the dishwasher every morning...and today he wanted to help again!  Nana put him the in sling she made and he told her where everything went. (BTW, the sling is totally awesome! I need to set up an etsy shop for her...) He helped stack cups and dishes where possible.  

The biggest milestone of the day was Oliver SITTING by himself and putting shapes into the shape sorter.  He was reaching for pieces and steadying his hands to turn and push the pieces into the lid.  We played in the basement for awhile and picked out a bunch of toys (most were from his early toddler days) that had fine motor skills actions involved and took them upstairs.  Then, I thought he was trying to get a snack (he points everywhere he wants to go...fairly bossy little dude these days:) however, he really wanted to go in the garage.  Apparently he wanted to go for a drive in mommy's car.  Since I didn't have a carseat installed, we just went to go sit in the back seat.  He was pretty happy with himself for sitting alone and was laughing a bit.  We had a good time, until I realized the CHILD LOCKS were engaged and we couldn't get out.  Oliver thought it was really funny when I started honking the horn...thankfully my mom finally realized we weren't just playing around and came to rescue us.  oops:)

At about 7:50pm Oliver asked to go to bed (rather, he pointed to the stairs and kissed everyone good night).  We rocked, read 3 books, prayed then sang...then he pointed to his bed and was asleep by 8pm.    Such a good boy!

May 2013:

The first couple days of May were pretty consistent.  Oliver had injections am and pm and several oral meds with each.  He is getting pretty good at just sucking them straight out of the syringe.  (He has always been good at that with tylenol...but these meds are a little less tasty).  

Some of the potential fun side effects of high-dose steroid treatments are cushingoid syndrome (puffy face and neck) and high blood pressure.  As a result, Oliver's new reality is a diet limited to 1 gram of sodium a day.  This is fairly extreme- the American Heart Association and the Kidney Foundation recommend a 2 gram sodium diet.  In addition, the nutritionist we saw during our 2nd inpatient stay said it was impossible (after all a bowl of soup has over 700 mg....really?  My kid doesn't even like soup in the winter, let alone the summer!  Though Auntie Sarah did point out that a sausage egg McMuffin has over 1g of sodium by itself, darn.  And, now the nutritionist is a running joke in our family).  Anyway, we have a friend who literally ate ZERO sodium for an entire year (he was fighting cancer cells naturally), so we knew it was most definitely possible.  What we didn't anticipate was yet another side effect...Oliver is constantly hungry.  Since at any given time, as many as 5 adults could participate in Oliver's care during the day we decided it was necessary to write down what he was eating.  Quite the task when he wanted to eat every 5 minutes.  As he has gotten more mobile, he is more easily distracted and doesn't need to eat without ceasing, but it was tough at first.  

On the 2nd, Oliver was very fussy near bed time, pointing insistently.  I thought he wanted MORE food, and I put my foot down.  The child could not possibly NEED more food to meet his nutritional requirements.  Eventually, we got up anyway so I could see more specifically what I was saying "no" to.  He lead me through the kitchen, past the fridge, past the pantry, through the dining room and to the staircase.  He just wanted to go to bed!  

We went through our normal routine: rocking, reading, praying...and this time when we sang, he tried to sing "Jesus Loves me" for the first time since he stopped talking.  It was an awesome "mom"ent.  One I will never forget. 

The last several days he has been playing in the basement more.  Nana took him down there and they found a Sesame Street Memory Game that Mimi and Papa got for Oliver at Easter.  Oliver loves organizing the cards and putting the matches out.  He is still struggling with patience.  If the cards aren't lined up perfectly, he gets frustrated.  But what really surprised me was that some characters have two different pairs...one is a close up of their face, the other a full shot (Grover's face and Super Grover for example)...and he would make sure to group both pairs.  I might be partial, but that seems pretty advanced:)  Below is a picture of him playing with his cards, note his mad sitting skills:)

Immuno-perfect!

Oliver and daddy enjoying the sunshine...the mask was mostly for pollen, but my cousin April exposed me to the totobobo mask that is so popular where they live in China due to pollution.  We are ordering one for him to wear during flu season for necessary doctor's visits.  

Preventative Measures

Currently, the only means of treating an auto-immune disease is to purposely shut off the immune-response that is creating the havoc.  In Oliver's case, OMS was creating elevated B-cells which were causing inflammation in his brain and the symptoms that caused us to seek treatment in the first place.  Unfortunately, medical science has yet to figure out how to target one specific immune response and thus the reality is that we suppress nearly all of his bodies' natural ability to fight infection- even a common cold.  To top it off,  relapses are almost always tied to an accelerated immune response due to infection (even a common cold). (we have faith that Oliver will never experience a relapse, but know that there are things we can do to give him the best circumstances)

In Oliver's case, the treatment is a bit extreme from the get-go as Dr P has seen better outcomes (less chance of relapse, less significant long-term effects) when they go in "guns blazing" rather than trying to take the least drastic course of action.  Of course, this approach was diametrically (oooo, I spelled that right the first time, AND I'm pretty sure I used it correctly, too) opposed to our normal approach.  We generally seek the least invasive, most natural course of action.  However, when you watch your child lose every ability he ever had in the space of 2 weeks, you are more willing to listen to the alternatives.  In this case, we were not fearful, but full of faith that Oliver was already healed and his symptoms were just catching up.  We decided to commit to Dr P's protocol as well.

Oliver is on 3 different immune suppressants: IVIg, Rituxan (classified as a chemo-agent) and high dose steroids (ACTH).  All 3 are given to transplant patients after they receive an organ to suppress the immune response to the foreign organ...this gives you an idea of what we are up against in protecting Oliver from infection.  Since these drugs are designed to "shut-off" the immune response, he cannot be exposed to infection at this stage at all.  A common cold could result in a hospital stay.  Thus, we are all hyper-aware of everything we do.  Hand sanitizer bottles are stashed all over the house, shoes stay outside, we all change as soon as we get home from being out, we don't kiss Oliver on the mouth, and the list goes on.  Additionally, Oliver does not go out in public unless he is going to a doctor's appointment.  We work hard to be sure that he has the first appointment of the day or the first one after lunch so that there aren't any other kids around.  His hands are sanitized frequently while we are out.  He has very limited visitors at the house, only essential people.  Taylor and I limit our contact with other adults, especially those who are around children, as much as possible.  Unfortunately, I still have to work, so I have some exposure there.  It will be a minimum of 6 months, but more likely a year before Oliver's system can handle the risk of being exposed to illness.  

Another consideration is the risk from exposure to people/pets who have been vaccinated.  He cannot be around someone who has received a vaccination for a minimum of 3 weeks, as these are known to cause relapse and exacerbation of symptoms if the disease is not in full-remission.  We had considered having someone help out a few hours at a time, a couple of times a week just so Taylor could plan for necessary errands...but these caveats of keeping Oliver safe eliminate nearly every one interested in providing childcare since we did not need someone full-time.  

Basically, please do not be offended if we decline an offer to spend time with you over the next year.  We are not looking forward to it, but again, willing to do whatever it takes to give Oliver the best conditions to continue demonstrating his full recovery.

In addition to avoidance measures, we also began to employ other preventative measures.  The doctor prescribed a prophylactic antibiotic 3 days a week and we decided on Intestiflora (probiotics), liquid vitamin D, tons of fruits and veggies (nearly all of them in pouch form, but it's a start), Nutrilite Kids Daily Multi, Nutrilite Fruits and Veggies 2 Go and Green Goodness, 12 hours of sleep at night (no, he doesn't do it because we tell him it's good for him...he takes Trazadone to help him get restorative sleep), 1-3 hour long naps, and running around outside every day (my friend Kara suggested 20 min/day shirtless for the natural vitamin D and Ollie does not object:)

Taylor and I often talk about where we will take Oliver to celebrate once the doctor "declares" what we already know- that Oliver is healed, healthy, whole and ready to venture out in the world.  We'll share once we've decided....which probably won't be until it is almost time to do it.  We keep coming up with different ideas!  

Our New Normal

Mommy and Oliver

Well, Mommy got her wish...Oliver slept from 7:45 pm-6:30 am in his own bed...woke up soaked from head to toe.  The ACTH was already starting to make him sweat and the extra fluids following the Rituxan infusion didn't help either.  We decided to go back to double-layering the waterproof pads.  One under the sheet, one over with a receiving blanket over that.  We also found we needed to air out his pillow each time he slept.  It was a really great morning, though, when I heard that little voice on the monitor saying, "I see mama! I see mama!"  

The hospital had ordered a nurse to come by the house to check on us that morning.  I'm still not sure why she was there- neither was she.  She thought we needed injection training, but we had done that at the hospital.  Well, at least we accomplished identification of one reason the health care system is less than optimal.  I was able to hang out through her visit, but I had to leave for work.  Taylor was on his own and I was nervous for him.  

Somehow, they made it through the (half) day.  When I got home, Aunt Carla was playing with him...Ollie loves her.  My new norm when arriving home from work began that day.  First, before even leaving work, I sanitize my hands and arms.  Then, when I get home, I immediately change all of my clothes and re-wash my hands (oh, and this isn't new- my mom has always insisted- but, I take my shoes off outside).  Only after completing these steps do I love on my baby boy.  

That evening, Aunt Sarah came home with Nana and Papa.  She was so anxious to see Oliver,  she didn't even want to eat lunch after graduation so she could get home faster.  Ollie loved on his Auntie and really enjoyed the company.  After meds, we went upstairs for bedtime and the best moment of my day...he tried to sing along with "Jesus Loves Me".  So great to hear that little voice.  

Sunday 4/28:

Twelve hours of solid sleep!  After morning meds, we played in the basement doing all sorts of re-learned tricks...turning knobs, pushing buttons,  (sort of) stacking blocks and playing with his zoo and animals.  All of this he did while lying propped on a boppy, like an infant while I cleaned up all the toys that were scattered around from his last real play time- several weeks ago.  

Oliver seemed to be burping a lot and he threw up a little, I wasn't sure the Zantac they prescribed to prevent GERD from the ACTH was working enough.  It also seemed like his sleep was less peaceful.  We planned to call the doctor on Monday, but honestly, I didn't know where to start.  The neurology team at UofM was the hardest to get ahold of- we had to leave a message with a department secretary who then relayed it to his office, where they would then call us...clunky.  The Dr P and Liz allow us to communicate via e-mail, which is nice and convenient, but they can't do everything from a distance.  At the very least, they do recommend who we should follow up with.  In this case, they directed us to our regular pediatrician. 

Monday 4/29:

We had to start figuring out how our mornings would look.  Oliver's meds needed to be given around 7am and I needed to leave for work by 7:45 each day.  The ACTH gel is refrigerated and has to come to room temperature before it can be drawn-up for injection.  Thank goodness Oliver takes the oral meds like a champ.  He literally sucks the meds out of the syringe (well, we had a few messy attempts first and are SO thankful that the benedryl he now takes on infusion days is given through his port- he still won't touch that stuff).  Ollie is also amazing with his injections.  He fusses a bit, but never cries. At this point, his was still pretty weak, so he couldn't struggle much.  But he could have cried if he wanted to.  Such a great kid!  He said "more please, thank you dada" today and went for a walk.  He waved at the dogs and had a great time.  He got a sponge bath from Nana and Mama at night...he still had steri-strips on his port incisions and couldn't be submerged.  It kind of made me laugh...we were set up on the kitchen table like we had a 3 day old baby we were bathing for the first time!  Oliver, however, was not a fan.  

The Rest of Round 2

April 25th, cont:

Oliver was supposed to have his Rituxan infusion on the Thursday the 25th in the evening.  Our nurse for the 12-8 shift was specially certified to give chemo agents and fully anticipated starting the infusion. As it turned out, there was a question at the pharmacy on the concentration that was ordered. (Apparently they only do round numbers and it was ordered with .5 in the dosing).  This meant that we would have to wait until the ONE doctor in the entire hospital that can order these drugs was able to review the order and make the necessary changes.  So, we waited.

We took Oliver back to Child Life a bit, but at this point he couldn't stand, so he wasn't as interested in playing with the train table as when he could navigate by himself.  We did do a little artwork and made friends with a little girl who was there with her family while fighting a post-op infection.  We did a lot of hall-walking to keep the little man happy.

8pm came and went and our overnight nurse was certified as well...Tyler, our only male nurse in nearly 2 weeks of hospital stay.  He was cool and I think Oliver liked him more...probably because Tyler never really had to do anything medical to him.  It ended up being a nice break and we slept straight thru until morning.  The shift had changed at midnight and we had another new nurse and still no Rituxan.

April 26th:
Round 2 of IVIG was started sometime in the early morning, Oliver slept through most of it.  We finally got word during rounds that the Rituxan would be ready sometime that morning.  The resident said we'd be released Saturday afternoon, a full 24 hours after the infusion should have occurred...but THANKFULLY, Dr Singh said she saw no reason why we shouldn't be home on Friday night.  We were thrilled to hear that.  Eventually 4 certified nurses later, they started the Rituxan and Oliver tolerated it with no reaction.  (I guess both the IVIG and Rituxan can cause anaphylactic shock, among other things).  We had already met with the discharge planner- a new experience for us- who helped coordinate all the different home care providers we would need in the coming weeks.  So, as soon as the Rituxan was done, including the post meds and hydration, we packed up and waited.  We checked out and were in the car by 4:30 pm.

My parents were on their way to Grand Rapids to attend my sister's graduation from GVSU on Saturday morning, so we came home to a quiet house.  Ollie ate dinner and hung out a little bit.  Then we gave Oliver his oral meds and ACTH injection and got him ready for bed.  I was anxious to see if he would sleep through the night now that he was back in his own bed....

Inpatient, Round 2

The new kids on the block...

April 24th:

Every morning for the last 5 days we had called to see if we could begin treatment....on April 24th, as I was driving to the office from a meeting, I got a call from Dr Leber saying. "Today's the day...the admission team will call you when a bed is ready.  It could be 10 minutes or 4 hours."  Back to waiting, but this time with excitement.  I called Taylor to let him know (I already had Ollie's bags and mine packed...or so I thought).  My boss had chosen to honor me and my friend Lillian by taking us to the Canton Chamber's employee appreciation luncheon that same day.  It couldn't have been better timed as I really could not have concentrated very well on customer's needs and wouldn't have wanted to be wrapped up in a long interaction when we got the call.  Which, happened to come moments before lunch was served.  I took a breath and tried to eat a few bites after I called Taylor....then headed home, in a SNOW STORM...michigan. yuck. 

I got home, did a quick change and we loaded up.  It was the first time we've ever checked into the hospital without starting in the ER.  It was a little strange, but nice not to be in a rush.  We were greeted on the 12th floor by one of our favorite hosts, Lynn.  She showed us to our new room, 2 doors down from the last one.  Oliver wanted to start walking the halls immediately...barely letting us settle in.  I hadn't packed much, we were under the impression we'd be there for 24 hours, 3 injections.  First one given by the nurse then one each by Taylor and I before discharging us.  Dr Singh stopped by with only 2 other care team members (a much smaller version of the posse).  She sat right down on the bed and in her very laid back manner, introduced herself.  After a few minutes of getting to know us, she shared her plan.  We were startled, but thrilled, to find out the plan was not only to start ACTH, but also to initiate the IVIg and Rituxan infusions as well.  They were also working with Peds surgery to coordinate placing Oliver's port during our stay.  We would be inpatient until at least Friday, maybe Saturday.  

I called my mom and then sent her a list of all the other things we would need.....the list was long. 24 hours turned into 54.  Along with my laundry list of essentials, Nana, Papa and Jay and Michele Lambert stopped by with pizza for dinner.  They didn't stay long since Oliver wasn't feeling too social:) and was sound asleep! He got his first ACTH injection that night and IVIg was started around 3 am.  The IV was in most of the "night" and lots of vitals were taken.  I've very grateful that the nurses don't adhere to the rule that says only the child should be in the bed...Oliver slept next to me, instead of ON me, but I don't think he would have stayed there by himself. 

The next day, Oliver woke up pretty cheerful...

In the wee hours of the morning, the surgery team came in to say Oliver would be on the schedule for around 11:30 am.  He couldn't eat or drink until after the port placement was completed.  I fell back asleep after he left and prayed Oliver would sleep late....that was stymied by the 7 am fire alarm test....

Somehow we made it through to the prep without any meltdowns.  We gave the anesthesia team Oliver's list of no-no sedatives, repeatedly.  We asked what the plan was, agreed, and they took him in. We took our pager and went back to the room to eat lunch and nap.  It wasn't too long before we were back down talking to the surgeon (who always wears the same white shoes as he started wearing when he began operating in the Navy over 30 years ago).  We asked lots of questions about the port, how it works and if there were any special instructions.  I was worried that he wouldn't be comfortable since his favorite position was laying chest to chest.  The doctor said he shouldn't be bothered by it, other than some bruising from placement it would be a non-issue.  Hard to believe...(now, I know he was right:).  

After he woke up, we took a very cranky Oliver back to his room.  After a short while, we began to wonder if he was in pain...he was SO grouchy.  As it turns out, they gave him a small dose of morphine , a narcotic.  The entire category is on Oliver's no-no list.  Lesson learned.  All of the drugs (not just the ones we thought applied to a given situation) are now on his permanent record...

The longest wait. EVER.

I went back to work the next day (April 18th) and worked through the weekend.  Both my parents and Taylor's were gone Friday/Saturday and it was a really long 3 days for Taylor and Oliver.  At some point, the backwards slide seemed to stop.  At his the worst point, Oliver could barely swallow and hold up his head, let alone sit, stand, walk or talk.  We waited SIX days before we were finally admitted to begin treatment.  It was just about all our patience could take, knowing we had a plan, but couldn't execute it.  We remained prayerful and thankful for all the prayers that were covering us in peace.  We needed it!

We fought the good fight with insurance.  Taylor was able to reach out to some friends and get everything cleared with BC/BS to start treatments.  However,  for some reason, we were unable to schedule the inpatient stay that would be required to train us how to give Oliver's injections of ACTH.  After further investigation, we discovered that our prescription coverage is separate from our medical coverage, despite paying only one premium (name left out just in case they are reading....we still need them to cover a lot of treatments!) .  The Company refused to fill the script without a letter of medical necessity from our Dr (the vials of ACTH gel cost $28,000 each and Oliver would need 6 for his first month of treatment), but they did concede that they would fast track the approval once they received it.  Dr Leber wrote a letter several pages long (I think I heard 8 pages!), but the Company still required a peer-to-peer interview before approving the treatment.  Thankfully, the company that produces ACTH and NORD (National Organization for Rare Disorders) have a compassion program that helps families with initial shipments of the drug until insurance can be persuaded of the medical necessity.  In some cases, they pay for it indefinitely if families are uninsured or underinsured.

As soon as we had the shipment of the first vial scheduled, we were admitted for inpatient treatment to begin.  We anticipated a 24 hour stay.  The nurses would show us how to give the injection and then watch us give the second dose.  We were surprised to find that Dr Singh (Dr Leber's counterpart on the neuro-service) had plans to initiate all of Dr P's protocols and that our stay would last 4-5 days.  We were thrilled, but unprepared to say the least....and so the next whirlwind began....

April 4th-  

trouble waking from his nap...

in retrospect, you can see his eyes doing some funny things

and he had some clumsiness at this point.

We took him in 3 days later.

 April 12th- 

pushing the bike around and talking

April 21st-

Happy and playful (thanks to trazadone),

 but unable to sit up or talk

A Plan of Action

A Message from Malaysia

(My cousins Duke and Teresita's kiddos- Lucas, Andrew and Valentina)

On April 17th, we headed back to Michigan a bit apprehensive about how Oliver would tolerate the travel after our last experience.  We decided to travel early in the day so we could stop frequently if needed and still make it home before bedtime.  (side note, I am very thankful for the full can of Lysol that the RMH housekeeper gave us for our journey on the off chance Oliver got sick in the car again.)  Thankfully, Oliver did really well.  We stopped for lunch when we spotted an accident ahead of us and were able to jump off the highway before we got stuck in traffic.  After a long, relaxed lunch, we got back in the car.  Oliver was fine with being in his seat, so long as only the bottom half was buckled and he could lean over on me.  We even got some giggles on the way home...

We had left Dr P's expecting to have a letter later in the week or Monday with his recommendations, but I got an e-mailed copy even before we arrived at home.  He had 21 items spelled out in great detail. Everything from a 1 gram low sodium diet  and a soft helmet to IVIG and Rituximab Infusions.  We were overwhelmed, but thankful to have a plan of action.  We will see Dr P again in 6 months...Oliver will astound them with his progress...we know it!

Dr Pranzatelli and Elizabeth Tate

Tuesday morning, April 16th, we woke up in complete darkness at about 6 am.  Oliver was NPO (nothing by mouth) since another lumbar puncture was planned around 10 am.  We took turns getting ready and keeping Oliver quiet then headed over to the clinic.  We checked in at the outpatient surgery area around 7am.  We were quickly taken back to complete Oliver's pre-op routine.  The whole gang of nurses, were wonderful with our very cranky child.  We even found a MI connection in IL- our anesthesiologist did her residency at UofM.  For the first time, we were encountering people who had an idea what we were up against.  Since Dr P's clinic is really the only center in the US studying OMS, most of the very few kids who fight OMS visit at one point or another.  We, however, had yet to meet the doc and his nurse practitioner Liz (who we later found out is his wife:)...but, we were about to.  When we were finished in the pre-op area, one of the nurses guided us up to Dr P's office where we waited less than 10 minutes before Oliver's exam began.

Dr P and Liz came in together and wasted no time getting to work.  Dr P began asking questions while Liz set up a tripod with a video camera trained on Oliver.  Taylor answered most of the doc's questions (I interjected some, of course;) and I worked with Liz to try to get Oliver to perform the tasks they needed to see as a baseline for their video.  At one point, Dr P asked how Oliver most liked to be held...I said against my chest.  He asked if "velcro child" would be an accurate description.  I'm pretty sure I laughed out loud because, he nailed it.  As the questions went on, we began to feel more confident that we were in the right place.  Dr P and Liz knew everything we were experiencing.  The rage, the restless sleep, hitting, loss of speech, coordination, eye movements, tremors, all of it.  While the interview was happening between Taylor and Dr P, Liz was trying to get Oliver to perform basic tasks like reaching for things, stacking blocks, throwing.  Ollie was the least cooperative he had every been at that point.  Looking back, I think he may have been fighting a virus as he had a low grade fever all day and his behavior was far worse than ever before or since.  We moved out into the hallway so they could see him walk, crawl, ect.  They asked to have him pull up on me from sitting.   He ended up kind of melting forward and just lying there crying and defeated.  I had tears in my eyes when they told me to go ahead and pick up him (it was seconds, but felt like FOREVER).  Our confident and capable little man was gone in that moment.  We clung to the promise that he would be fully restored to keep our minds clear.  Following the exam, we were escorted back down to the outpatient surgery area so that Oliver could have his spinal.

The nurse reminded us that one of us would need to say on the premise at all times since he is a minor, but directed us to different places to get lunch.  I made a joke that all I really wanted was a bed.  They took Oliver back and shortly after a nurse came out and said they had a room prepared for us if we wanted to take a nap.  The door had a sign on it saying it was in use by a family.  Inside, two fully reclining rockers, bedding, and a TV.  Needless to say, it looked like a slice of heaven to us.  Taylor left and grabbed us some lunch- by that time it was tough to determine which basic need was more urgent- sleep or food.  The team in that clinic was phenomenal.    They updated us all along the way.  Dr P came in after the procedure and spent 30 minutes with us talking about the treatment protocol he recommended and answered our litany of questions.  He also called in a script for Trazadone which is a serotonin inducer and would help him sleep at night.  The goal was for Oliver to sleep 10 hours a night uninterrupted.  This would be restorative sleep which would not only help him heal, but also greatly reduce or eliminate the rage.  Oliver was still asleep after the procedure, so his recovery nurse told us to go ahead and sleep, that she would wake us when he was up.  I think Oliver was as tired as we were and let us nap for a couple of hours!  The nurses there that didn't know about OMS were looking it up on the internet, the others called Ollie one of Dr P's kids.  We were so impressed by the caring and personal attention given us and our son by these wonderful people.

When we woke up, we headed back to the Ronald McDonald House.  Oliver was restless and wanted to be outside despite the rain.  Eventually, a lovely group of people from a local church came in to make dinner for the residents.  We hung out in the kitchen with them and enjoyed the conversation and the food.  I never really thought much about RMH before, but like many people I assumed lots of kids stay there.  As it turns out (and it makes sense), very few children are ever at the house- in the case of the Springfield house- they are usually there for the OMS clinic.  The RMH staff knew Oliver was there to see Dr P, they also understood the condition.  At this point, it was very comforting to have someone understand without having to explain what was going on.  One of the staffers said it best, they are there to care for the parents so the parents can care for the kids.  The impact RMH and its staff made on us in that two day stay was huge.  We are looking forward to being able to serve in our local house once Oliver has recovered.  We have begun collecting pop can tabs to donate as well.

We gave Oliver his first dose of Trazadone that night.  He still slept between us, but he was peaceful that night and slept for 8 hours, I think...the next day we headed out after breakfast...

It was a dark and stormy night.....

no really. it was, but i'm skipping ahead a bit.

We came home from the hospital on Thursday night.  I was off all weekend for a previously scheduled conference with our business team.  So I was able to stay with Oliver for a 3 day weekend.  The kid stuck to me like glue....almost always chest to chest and often asleep.  Dr Leber called on Friday to let us know that Dr P would see us at the National Pediatric OMS clinic in Springfield, IL on Tuesday afternoon.  We would have to spend the night Monday and Tuesday night and they had arranged for us to stay at the Ronald McDonald House about 2 blocks away from the Southern Illinois University Hospital that housed the clinic.  We were thankful to be getting in to see him quickly and excited for a treatment protocol that would return our child to us.

We had no idea how long a weekend could feel.  Oliver was no longer sleeping well at night.  Maybe 30-45 minutes at a stretch, fitful the whole time.  He would scream if he was left in his bed and attempt to stand up (frightening when he was so uncoordinated and would have tremors when he tried) so we couldn't leave him there to try to fall asleep without risking his safety.  So, he slept with us.  Which meant, we didn't sleep much at all.  Taylor ended up calling his mom before 6 am on Monday to ask her to come help him so he wouldn't be alone with Ollie the whole day while I worked.  I'm so thankful (so is he!) that Mimi came down.  She kept Oliver entertained most of the day, but he was beginning to change.  His behavior was rapidly declining, to the point that we didn't even recognize him as our son.  The only way to describe it is rage.  He would yell, point, turn red in the face.  It was really hard to watch.  At this point, we really didn't understand much about OMS....we were holding Ollie or doing something for him or each other almost 24/7 so we hadn't had time to do any research or reading.  If we had, we would have known the rage stems from lack of restorative sleep.

Monday night, I rushed home from work so we could pile in the car and head to Springfield....

OK, back to the story... it was a dark and stormy night...... the drive to Springfield should have taken about 6 hours, the longest we had tried to go with Oliver ever.  We left about 6 pm, figuring he would fall asleep around 8.  We were wrong.  SO VERY WRONG.  About 1 hour in, Oliver started fussing, which quickly progressed to crying.  Taylor and I switched around and I went in the back seat to try to calm and entertain Ollie.  Nothing worked and Oliver ended up throwing up several times from crying so hard.  Meanwhile, Taylor has about a 2 car length visibility through the torrential rain when we come to a complete stop.  Eventually, we were routed off the highway for a detour (an accident had closed 94) we were able to stop on the side of the country road...though we couldn't find a covered gas station or anything dry.  We cleaned Oliver up as best we could, walked him around in the rain for a bit (thankfully it had let up some) and piled back in.  We would continue this stop, walk, regroup routine at least 2 more times before we finally gave up.  We were deciding between finding somewhere to stop for the night (really, only a few hours at this point as we were still 4 hours from Springfield and we had to check-in at the clinic at 7:30 am) and pressing through the screaming child and raging storm.  We decided to pull ollie out and keep on driving.  He slept peacefully for the final 4 hours and Taylor safely navigated the floodwaters.  We arrived at Ronald McDonald House 2 hours later than expected... the overnight manager was just as gracious as if it were 2 in the afternoon.  We quickly settled in, set an alarm and went to sleep....with a restless baby boy between us......

A side note...

We have been asked several times recently if it would be ok to share our blog. And, yes! It is!  I never thought to give permission before because I didn't think that many people would be interested....it really started to keep our family informed (we are spread out from China to Malaysia, California to Florida and many places in-between).  However, we feel that the more people who know about OMS, the better chance for an early diagnosis for more kids.  In addition, we have a firm belief the faith works.  The power of a believer's prayer is undeniable and we are grateful for all those who have joined us in our prayer that Oliver is healed and whole from the top of his head to the bottom of his feet, that every part of his body functions perfectly- the way our Creator designed it to.  

Again, feel free to share and thank you for caring!

Love,

The Whitt Family

the pic below is from Ollie's 2 year pics taken in January:)

Decision Time

Thursday afternoon, Dr Leber and a scaled down group came by our room to let us know that the results of the MIBG were (as we expected) negative for any evidence of neuroblastoma.  However, they had concluded that, while idiopathic in nature (meaning without known cause), Oliver was experiencing all the symptoms of OMS: opsocolnus- myocolnus syndrome.  They actually said OMA (the A being ataxia, our specialist in IL said if every symptom got a letter tacked on, the syndrome would be as long as the alphabet).  We all took a deep breath and waited for the rest.  Dr Leber proceed to elaborate on all the possible long term impacts of untreated OMS.  The list is long and not pretty, but we do not believe Oliver will experience this "worst case scenario" so I will spare you the details.  You can do a Google search if you care to know.

Quite honestly, the thing that rattled me the most that day was the recommendation for high-dose steroid treatment (ACTH, in actuality).  The side effects of this treatment would be diverse and nasty.  I could only relate on a small scale from my fight to taper off prednisone which is being used to treat my own autoimmune disease.  I think that was one of the first and only times I really cried.  I know what it can be like to deal with drug that causes almost as many things as it fixes.  Not to mention the fact that for Oliver it would mean inter-muscular injections (IM) as often as twice a day, tapering to every other day for 6 months, minimum.  Dr Leber's other suggestion was visiting a neurologist in Springfield, IL who specializes in OMS diagnosis, research and treatment- Dr Pranzentelli. The one thing he did not recommend was doing nothing.

Upon hearing the options, and having watched Oliver decline for a week while we were at the hospital,  we decided to go home and re-group.  We wanted to pray, consider and see Oliver in his native environment to see if he would improve on his own without the doctors and procedures.  We gave Dr Leber the go-ahead to call Dr P. to see how quickly we could get an appointment for a consultation and a second opinion.

And so, we headed home...