Six Months Later…..
It's been almost six months since we left CHOC in March. Riley's recovery has been nothing short of a miracle! We are proud to say that we have only been back to CHOC for check-up's. This summer Riley was released from his 180 day isolation post-transplant. Thanks to the team at CHOC– Riley now gets to enjoy life!!!
We invite you to join us in the CHOC Walk on Sunday, October 21st at Disneyland to celebrate our miracle. It's $25 a person to walk in the event. If you are not able to join us for the walk we encourage you to sponsor a team walker. If you would like to sponsor Riley his ID is rmeunier & Sydney's ID is smeunier.
Last year "Team Riley" raised more than $2,000 to support Children's Hospital of OC. Please visit the site below for more information:
http://www.chocforms.org/chocwalk/2007/Team%5FRiley%5FMeunier/
If you have any questions about the CHOC Walk please email me at ameunier@nmusd.us
Our goal is to continue to support CHOC and help families who follow in our footsteps. Thank you for being apart of our journey!
Love,
The Meunier Family
He’s HOME!
Riley has returned home from Children’s Hospital of Orange County! The little big man is now sleeping in his own bed!!!!! He still has to go to the doctor nearly daily but he’s chillin’ with his big sis and hanging with the parental units 24/7!!!
The last numbers were: His white blood count up to 10K and his platelets are at…get this…150 thousand!!!! (Normal range is between 140 & 300K) For Riley to be above 50K is something he could not do on his own. It is The Sydney that’s in him that has made him stronger. Sydney’s DNA must be some potent stuff!!!
Amy is at home with Riley and Sydney and is now doing all the duties that the wonderful staff at CHOCs has been doing for these last few months. CHOCs is a life saver. Every person from the lead doctor to the sweet lady who cleaned Riley’s room twice daily, are all incredible. We can thank them enough and if all goes accordingly…Riley will be celebrating his “other” birthday every year with the staff at CHOCs. Riley’s birthday is February 9th. His second birthday is January 24th. The January date is what we consider his “other” birthday and the staff at CHOCs has made only one request of us…bring him in every January 24th. We plan on accommodating this simple request…and knowing Amy…there will be cake and pictures and a party for the staff and other children.
It’s not all over but Riley has made a huge turn and with a regular maintenance program for the next 8 – 10 months…he should be a strong, healthy boy!
As always and with great appreciation, thank you all for your kind words, positive thoughts, and your prayers. None of us would have survived without ALL of you!
The story continues…
Go Riley Go!
The Dog Days of March
We are all becoming tired of the grind. Mom is with Riley everyday while Daddy is working and caring for Sydney. Meanwhile the grandmas are both working full time and still putting in much of their off time with Riley. Papa too, is becoming a bit fatigued by the long hours and the even longer drive (if I never drive the 91 Fwy again…). Speaking with Amy this morning we have all come to the realization that it is hard to get into the car and drive to CHOCs and (cognitively) preparing for another shift with Riley. However, it’s even harder to leave him after being with him for so long. He is such a wonderful little boy. When he sleeps he has to have one hand on you at all times. He talks in his sleep and like his sister; he uses the entire mattress while sleeping.
We are not sure when the little big man is coming home. Some of his numbers are up and some are not where they need to be. The dog days of summer are upon us and it’s only March.
The staff at CHOCs continues to be professional and understanding to our sometimes frustrating situation. We appreciate, respect and will always be indebted to this fine group of people for giving us the opportunity of raising Riley to become whatever his heart desires.
It’s Sunday night and Mom has just changed shifts with Daddy. Sydney seems to be handling all the shuffling and work starts again tomorrow. It’s time to prepare for Monday and see what the week holds for Riley.
Keep the good thoughts and prayers coming and know that although Riley is not 100% (yet)…he is happy and smiling.
Go Riley Go!
Go Riley Go!
Riley is still hoping to come home soon. Just when we think he’s ready to head out the door…his numbers don’t add up and he has to settle in for a little longer. CHOC’s has extremely high standards and we know they have Riley’s health as priority one. CHOC’s Rocks! Word is…Riley is now 100% Sydney. Meaning his DNA is now an exact match with his sister!
More to come….
Go Riley Go
Sydney & Franma Doodle Bop’in!
Last week was a switch-up week for Team Riley. Mom continues to stay with Riley on most nights and some of the days, with Gramma Kathy relieving Mom a couple of nights a week and helping to make sure that Sydney gets where she needs to go. Dad gets to come in and spend the day with Riley on Sunday, which has been his only day off of work. Dad has a great job making sure that all of the heavy equipment is working for a large demolition company that has been taking down (floor by floor) the Century City Hotel in downtown Los Angeles. Although his job is exciting (especially when he was repairing the crane 350 feet in the air…wow, what a view), the best part of his week is Sunday when he gets to spend that special “guy-time” with Riley.
Last week also included a change up with Papa and Franma. Papa had been staying during the week and Franma and Aunt Jessie have been staying with Riley for 24 hours on Saturday. Papa is now back “on track”, teaching his special-ed kids and Franma is back in the O.C..
For Riley, this has been a pretty good week. He has been feeling so much better, having kicked the RSV bug. RSV is a common respiratory virus that, unfortunately Riley contracted right at a critical time. When Riley’s white blood cell count was virtually zero a few days after his transplant, he developed a cough. Everyone took notice, but prayed it was just a dry throat. When the throat culture came back positive for RSV, everyone knew we all (especially Riley) were going to be in for the fight of our lives. We knew that Riley was getting treatment at one of the finest children’s hospitals in the country. Unfortunately, CHOC had to prove that reputation during these critical weeks.
When a child’s life is saved by a single act performed by a single person, that person can be called a hero. We have all heard the refrain of “I was just doing my job” when one of these heroes is identified. That is exactly what Sam, the respiratory therapist on night shift said, after he saved Riley’s life. Mom was holding Riley during one of his night respiratory treatments when Riley quite suddenly stopped breathing. Within seconds, Riley’s color was grey, and he was limp. A mucus plug, loosened by the bronchodilator he was received had completely blocked his airway. Sam immediately called a “code white”, and began to deep suction Riley’s airway. In less that a minute, the room was full of responding personnel. Due to the quick action of Sam, and the rapid response of the code team, a full code blue was averted. A code blue would have meant that Riley was without oxygen long enough for his heart to stop. Sam will always be our hero and we will always be grateful that he was there at the exact moment when Riley needed him the most. Thank you Sam.
It is so wonderful to see Riley gradually gaining strength. He is now playing and waving at everyone that goes by the window to his room. He has a new, very adorable expression that he uses when ever he sees someone he recognizes or something that he has never seen before. He makes an O with his mouth and points. His expressiveness is always present, even when he is not feeling his best. The smiles are coming more frequently now.
The count down for discharge began last week. There have been some challenges, but we are gradually overcoming them all. Because Riley didn’t have the strength to eat for quite sometime, he was placed on complete IV nutrition. There was worry that he might choke on anything that he might try to swallow. Unfortunately, Riley forgot how to eat. He has had a struggle realizing that food is good, and that eating is important. With a lot of patience and even more persistence (Riley can be quite hard headed), he has been making strides towards meeting his nutritional needs by mouth.
Last week, we began to have negotiations with Riley about wearing his mask. You see, for quite some time, Riley will continue to be at risk of developing infection. The will be a particular problem when he is taken to the clinic for his follow-up appointments after he goes home. I don’t know if you know this, but masks are kind of yucky. You feel closed in, sometimes they ride up into your eyes, and they don’t smell all that great. Riley decided he didn’t like them at all. That was until Riley realized that the mask meant that he could go out of his room and see all of his friends at the nurse’s station. The nurse’s station is a very interesting place. There is always activity there and there are always interesting people that love to talk to you. I know that if Riley could talk he would say “OK, I get it now! The mask on my face means that my world gets so much bigger and more interesting”.
Last week was a big one for big sister Sydney as well. First of all, Sydney had her last day of day care at the Orange Coast College Daycare. There was a going-away party just for Sydney. You see, Sydney has lots of friends at OCC. Sydney plans to return in September after the risk of infection to Riley is gone. Until then, she will be at home having fun with Mom and Riley.
And of course, there was the Doodle Bops concert. That was on Thursday night and it was the greatest. Franma, Pamma (Sydney’s aunt), Uncle Mike and Aunt Tara thought the Doodlebops were some of the best entertainment around. Mia (Sydney’s cousin), Sydney and Jenna (Sydney and Mia’s good friend) danced and sang all of the songs. We all will continue to live by the Doodlebop pledge:
We promise to share, We promise to care, All together as a team
Just stick to it, We can do it, We can do anything
Stand tall, Say it loud, We’re together and WE ARE PROUD
Franma and Sydney would like to thank Pamma for all the work she did so that we could have a good time. You know, she really spoils us. We would also like to specially thank Sheila Blomgren. She is the Grove of Anaheim’s office manager that made sure our experience was so wonderful. We know that there are some behind-the-scenes people that also were helping us. Thank you to all at the Anaheim Grove. What a fantastic place. All of the attendants were fun and friendly, and it is true…there isn’t a bad seat in the house! THANK YOU!
All of Riley’s labs are good now. In fact, the transplant labs are phenomenal. We have heard rumors in fact that Riley’s recovery may be record-setting! It is clear that Riley’s bone marrow is producing white blood cells and platelet cells on their own…at an extraordinary rate! We all thank God for the expertise of CHOC hospital doctors, nurses, and the transplant team for this happy beginning. Of course, we are still in awe of the miracle of an exact bone marrow match with Sydney. We are heading toward the home stretch. Thank you all for your prayers and good wishes. We know that there are so many that have been watching, waiting, and praying with us.
Go Riley Go!
Love, Franma
Going Home?
The week in review:
Monday – Riley is still on TPN (meals in a drip bag). He isn’t eating yet and that is somewhat of a concern…
Riley may or may not have surgery today. He is due to have surgery on Wednesday but if a slot opens up today…he’s going over to St Josephs for a new port and removal of the port in his groin.
Turns out, Riley is going for surgery this morning. Papa quickly calls Mom who in turn scoops up Sydney and heads back to CHOC. Meanwhile, someone from St Joe’s surgery arrived to take Riley down to surgery. Knowing that Mom and Papa will have to make a switch (Papa gets Syd and Mom gets Riley), one of the nurses…Laura…who calls Riley her “boyfriend!” carried Riley down through the tunnels under the medical plaza to surgery…Riley enjoys the ride while waving at everyone and pointing at everything on the walls.
As we approach surgery, Papa’s phone rings and he hears Mom’s voice. “Where are you?” Papa asks. Mom comes through the doors and says “Down the hall coming your way.” Riley sees Mommy and Sydney sees Papa and we don’t think either realized we switched out until much later in the day!
Riley’s surgery went well. He now has a port in his chest that can be accessed on an as needed basis.
Sydney spent the day with Jenna (her friend), Pamma, Papa, and her cousin Mia (and Mia’s Daddy). They went to story time at Huntington Library and then fed the ducks. Fun was had by all!
Tuesday – Riley is no longer getting the TPN bag (food in an IV bag) but is receiving liquids so as to not dehydrate. We have all been trying to get him to eat or drink something…but the little, big man is in charge and he’s going to do what he wants to do when he wants to do it…
Wednesday – Speech and Occupational Therapists are concerned that Riley is not eating. We are given little implements of oral stimulation to help Riley overcome any problems he may have with the texture of his food. He is no longer having puréed food sent to his room but now he’s receiving mac-n-cheese and French fries…Riley isn’t having anything to do with any of it. We are all trying to get him to eat.
Thursday – Riley’s IV came out…for the first time since entering CHOCs…Riley is not hooked up to any hoses, tubes, or wires…it’s a major moment that takes our breath away. No longer tethered to his “pole,” Riley can now move about with no restrictions. It truly is a wonderful moment…but on the other hand…he’s no longer receiving any liquids or nutrition. One of the therapists has discussed putting a tube up/down Riley’s nose. Mom and the Grandmas won’t have any of that! We continue to try and manipulate Riley into eating something…anything! We’ve tried things he can hold (cookies, pretzels, corn chips, etc.,), we’ve tried different flavorings (cherry, orange, banana, etc.,), we’ve tried letting him play with his food, sneaking food into his mouth when he wasn’t looking, we’ve tried begging, pleading, bribing, and all to no avail…Riley was not eating. Things are not looking good.
Friday – Plan #246 to get Riley to eat. Mom told Dad to buy the same kind of bottles that Riley used at home…like that’s going to get him to eat!
Papa arrives at CHOC with above mentioned bottles and finds Mommy using a syringe to feed the little, big man who won’t eat. Amy asked that Papa fill one of the bottles. Papa fills the bottle while having idle chit-chat with Mom about the way their night went. Papa hands Mom the bottle and they continue speaking when all of a sudden Amy gasps, “Oh my! Look!” Papa turns to see Riley…chowing down on 2 ounces! One hand holding the bottle and the other stroking his own head…just like the old days!!!!! Riley is eating on his own!!!!!!!!!!! Mom and Papa start dancing and singing “Go Riley! Go Riley! Go Riley!” and calling Franma, Grandma Kathy and Daddy to share the wonderful news! Meanwhile, Riley just suckles his bottle, strokes his own head and turns to watch Baby Einstein on the TV…like it’s no big deal.
When the doctor came in and saw Riley chuggin’ down a bottle he said, “If he keeps this up he may get to go home next week.” Amy and Papa just looked on in stunned silence. When the doctor left the room we both looked at each other and made sure we heard what he said…Riley may be going home this week! What a week…What a month…What an experience…What a wonderful little boy!
Go Riley Go!
Doodle Bops Rock!
Riley has all but kicked his RSV! He still has a cough but he hasn’t been gasping for breath for several days now. It was so hard to see the little big-man sucking hard only to get short, little breaths…but now he’s up and playing for hours at a time!!!
Riley had surgery this week (Friday) to relocate the port lines from his chest to his groin area. He is going to have another surgery (scheduled for Wednesday) to put his port lines back into his little chest. There have been signs of dangerous bacteria growing in his two lines and this is the best/suggested course we have been advised to take. The infections from his bacteria laced lines are showing negative results but we are told that this could be masked by his antibiotics… Meanwhile, he’s recovered well from his surgery.
Riley had a visit this week from his first celebrity. Papa and the little-big man were playing in his port-a-crib (he can stand and roam around in the port-a-crib without worrying about all the wires and tubes that he’s tethered to being yanked out or down…) when all of a sudden a bunch of people were standing outside his room. There must have been 12 people all with clipboards and determined looks on their faces…at first I thought it might be the President of the United States, then I thought it might be some famous rapper with his/her posse…then, before our very eyes appeared the one and only Minnie Mouse…and I’m not talking about some department store Minnie…she was the real deal! Riley looked at her with a blank look and then back at Papa and then back a Minnie and flashed the Riley-Man smile. Minnie was obviously taken back by his quick and surgical smile…but the fun part was all of her posse members dropped their clipboards and smiled and waved back. Riley flashed one more smile and then turned to continue throwing blocks about the room for Papa to pick up, wipe down and reinsert into his port-a-crib.
Sydney has been doing well too! She has been able to get up to Riley’s room and stand outside the glass and look in on him. She reluctantly puts on a little mask and looks in for Riley. They both just look and wave at each other for a few moments and move on to other distractions. Sydney tells people two things…first she says, “Riley in hospital.” And the other is “Look at my toes!” She had her toes done for surgery and will stop, drop, and take off her shoes and socks to show you her toes…she’ll show you or anyone else who simply asks. Sydney has some great news to share…she is going to see the Doodle-Bops! Yuppers!!!!! Live and in person!!! She’s going with her cousin Mia and her friend Jenna. All three can sing the Doodle Bops song…over and over again. Team Riley would like to give a much appreciated shout out to Sheila B. of the Grove! She was able to facilitate tickets for Sydney, Mia, and Jenna. Thank you Sheila!!!!!
More to come…
Go Riley Go!
Happy Birthday Riley!
Riley turned one yesterday! So far being one is very busy. Riley had to work with the speech pathologist, the occupational therapist, the physical therapist, the repository therapists and take a bath…all in the same day! He was a busy little trooper indeed!
Riley has been showing good signs of accepting his transplant and we are all hoping and praying that he has made the turn on the RSV. He is still receiving breathing treatments. He was getting them every two hours…they were stretched to every four hours but that last hour was exhausting for him so he’s now back at every three hours.
The entire staff at CHOC is amazing. If I have said this before…I’ll keep saying it. They really are an outstanding group of professionals that work extremely well together and make us all feel informed and comfortable. Speaking of informed…to hear Amy talk to the nurses and doctors, you’d think she was in the medical field. (AMY, YOU SHOULD BECOME A NURSE! 
)
During the day, Riley’s room is visited by many members of his medical team. Most of the time, it’s for clinical reasons but a lot of the time it’s just to visit with the little-big man. Last Wednesday one of the nurses ran me off to get breakfast…when I told her I wasn’t hungry she said wanted to hold Riley and rock him. When I returned from breakfast, Riley was in her arms sleeping and she just sat rocking him, singing softly, and smiling…I waited another 10 minutes outside his room (I think it was the nurse’s therapy session). Honestly…these people are remarkable!
Another thing that is happening is people stop and look in on Riley from outside his room. Riley has his own room and is in isolation. He has the second room as you walk into the isolation unit at CHOC. We all wear masks and clean clothes when we are with him (I’m talking fresh out of the dryer clean clothes, socks and slippers!). His room has a glass door and a large glass wall out to the hallway. There is a curtain that we can pull for privacy and we kept it closed while Riley was at his most difficult time (last week). This week we pulled back the curtain and now people stop buy and look in…at first, I was a little uncomfortable that people would just stop and stare but then Riley waved and smiled and the people looking in all cheered and started waving back. Riley loves the attention. The people who look in are other parents, hospital administration, ALL the nurses, doctors, interns, maintenance people…you name it. If they are allowed in oncology…they stop buy. If and when you get a Riley smile…you too will stop and say “Hello!”
When the medical staff comes into Riley’s room they dawn rubber gloves, masks and yellow cover-alls…I call them “The lemon people.” Riley will give then a smile and maybe a chuckle, then bury his face into my chest and waits for whatever poking or prodding he’s going to get. Then he turns, relaxes and flashes his little pearly whites and let’s whomever it was working on him know that he has no hard feelings.
One thing Riley hates…and I do mean hates…he hates to get his diaper changed. I mean, hates, hates, HATES! We have tried changing him standing up, upside-down, holding him, on his back, on his stomach, on the bed, in a chair, in a box, with a fox, with a goat and on a boat…I do not like having my diaper changed, Riley I am! As for all the stats & numbers…and there are many…Amy will fill those in later when she gets some time. I know that Riley is making his own platelets (Thursday morning @ 14k, Friday afternoon @ 22k), and he’s beginning to build his immune system to where he’s almost ready to get into his wagon and take a ride outside his room…but that RSV is what is tripping him up at the moment…
Again, thank you all for your thoughts and prayers. We all enjoy hearing from each and every one of you! There are others in Riley’s unit that are simply alone in their struggles. We can feel the positive energy and prayers from all of you and you have no idea how much it truly helps! We are not alone and we feel it. Thank you all and keep the prayers coming. Riley is getting better but he’s not out of the woods yet. God bless every one of you!
Go Riley Go!
February 4, 2007
It has been a long hard week. But as we begin another week…we are happy to report that Riley is still a stud and Mom is as tough as her son.
Amy is and has been at the hospital constantly since Tuesday night. She has had a good night sleep and is at her son’s side as I type. Riley has been doing very well with his transplant…meaning that his body is accepting the transplant (as of this writing)….and we are all thrilled! However, there have been some complications.
Riley has contracted RSV. Respiratory syncytial virus (RSV) is the most common cause of bronchiolitis and pneumonia among infants and children under 1 year of age. Illness begins most frequently with fever, runny nose, cough, and sometimes wheezing. During their first RSV infection, between 25% and 40% of infants and young children have signs or symptoms of bronchiolitis or pneumonia, and 0.5% to 2% require hospitalization. Most children recover from illness in 8 to 15 days. The majority of children hospitalized for RSV infection are under 6 months of age. RSV also causes repeated infections throughout life, usually associated with moderate-to-severe cold-like symptoms; however, severe lower respiratory tract disease may occur at any age, especially among the elderly or among those with compromised cardiac, pulmonary, or immune systems.
Riley is struggling with this virus and on Tuesday night he stopped breathing. Amy and Sam (Sam - one of Riley’s Respiratory Therapists) were with Riley when he stopped breathing. Amy, putting her son first, made a very difficult decision at the time of crisis…she stepped outside Riley’s room when the crash team came in…Amy (I hope) will tell more when she has the time and has put some distance from the crisis. Apparently, CHOC’s was on Riley in a matter of seconds. Amy stood outside Riley’s window watching when one of the crash team members came out and said, “Your son wants you.” Needless to say…none of us are over it yet…hence Amy/Mom hasn’t left Riley’s side and has not been able to keep you all updated…and Sam is Superman!
From what we know at this point…Riley has accepted his sister’s bone marrow and on that front things are looking VERY good! He did spend some time in the intensive care unit but was returned back to his oncology unit a day later. Last night Riley was up and laughing…he’s still having trouble breathing but he is fighting like a trooper and we couldn’t be more proud of him. There are now two people with Riley since Tuesday and one of them is always Amy…and the others are the grandmas and the grandpas and daddy. Poor Sydney isn’t allowed to see Riley yet and that’s just another thing Amy has been dealing with…
Amy said that she felt “lucky” to be with Riley when he coded…Amy was with Riley when he coded because that’s what mothers do…it wasn’t luck…it was love and devotion.
Hopefully we can pry Amy away from the hospital this week for a well deserved rest and some time with the Squidley and Daddy…
CHOC is incredible and continues to raise the bar every day. Riley’s team of doctors are on site everyday. Yesterday (Saturday) the lead doctor (I don’t know if I am allowed to name names) was with Riley in the early afternoon and again later that night…meanwhile another one of the team members was in Riley’s room at 9:00 am Sunday morning. Everyone at CHOC treats Riley like he’s the most important patient in the hospital!!!!
Keep the prayers coming and know that Amy thinks of everyone. Riley is fighting and winning…it has been a tough week but he’s holding strong and we hope to have great news next week. God bless you all!
Go Riley Go!
Day 22- Tuesday, Jan. 30th
We've been very busy this last week! Even though Riley's transplant went amazing we hit a minor bump in the road. Over the weekend he began coughing which normally would not be a problem but when you have no immune system that is trouble. By Sunday night it got much worse and we found out that he contracted RSV. RSV is a respiratory virus that he may have contracted from being in the hospital…we aren't 100% sure where it came from. If an infant or toddler with a normal immune system contracts the virus it would be similar to a common cold. RSV is not treated with antibotics because it's not a bacterial infection so it just has to run it's course. He was given IVIG which is an immune booster that will help fight it off until his white cells begin to rise. In the next few weeks his white cells should begin to rise and help fight off any other infections that may occur. We are taking huge precautions to protect Riley and the other patients in the BMT Unit. We have to wear masks when we are in the room or have visitors.
The effects of the chemotherapy are beginning to surface. In the past few days we have noticed that is hair is beginning to slowly fall out. This is very normal however it is difficult to see. Most parents have told me that they end up shaving their child's head because it's difficult to watch this. I can't wait to see Riley with no hair…I think he will look great. The shaved head look is in anyways!!
Sydney is doing remarkable! She had her first day back at daycare yesterday & did great. She has moved up to the Young PreSchool class. We are so proud of her miraculous recovery!!
The last few days have been tough but we knew they were coming. I wish we could just breeze through the entire transplant process with no complications however that's pretty unrealistic. It's a very minor set back in the grand scheme of it all. Thank you again to all of my friends who have helped me survive the tough days. Your emails, text messages, & love has helped me get through this experience.
Thanks to our parent's who have helped stay at the hospital for the past three weeks with Riley. They spend all of their free time at the hospital & are all still working full-time. Their love & support has helped Jason & I tremendously. We have a rotating schedule & take turns staying with Riley & Sydney.
I will keep you posted on his condition in the next few days. He is doing better today!
Love,
amy
Welcome to Team Riley!
Riley has Wiskott-Aldrich syndrome (WAS). His big sister Sydney is donating bone marrow to help her little brother.
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